Dysautonomia Normal

Dizzy

2011-11-05T11:22:00.000-07:00

Dizzy,
I'm so Dizzy, my head is spinning
Like a whirlpool, it never ends
And it's you POTS, making it spin
you're making me dizzy

These are lyrics to one of my favorite oldies that seems to be the theme song for my daily life with POTS. I'm dizzy all day long. Every time I change positions my world appears to sway like I'm on a ship on rough seas. Those who are "normal" have no idea how often they change positions in a day. They just walk through life with no idea that their body is doing it's job of regulating their body to do such simple tasks. It's not just sitting down, standing up or laying down. It's leaning over a student, tying a shoe, tilting my head to put a knife away, putting a pot or pan away or getting a roll of toilet paper from the cupboard. Just normal stuff that most people never think about. Because this has become my "normal", I tend to ignore the swaying ship feeling and keep on going. Most people would sit down and wait until the swaying stopped. Ignoring the swaying ship feeling can be a bad thing, today while putting a knife away my world began to sway and I missed the drawer and the knife came tumbling down on my foot "ouch". Luckily I only ended up with a small cut. Usually the swaying stops within a few seconds and I can continue on with what I'm doing. Sometimes the swaying ship takes a mini vacation in my head and doesn't go away, then I know I can't ignore it any longer and I have to accept defeat for the day.

When I was first diagnosed with POTS the swaying ship took its toll with sea sickness all day, every day. I battled with nausea for about two years before my body finally became use to being on a ship on rough seas. While I'm on the subject of ships, my family wants to go on an Alaskan cruise! Hmmm, not sure how my body is going to like that one, and I'm not sure if I even want to spend a large sum of money to become intimate with a strange toilet off the shores of Alaska. I'll have to pray about that one.

Welcome to the SS Michele, be prepared for a goofy ride and occasional rough seas ahead.

Inspired,
Michele

Psalms 107 23-32
23 Those who go down to the sea in ships, who do business on great waters;
24 They have seen the works of the Lord, and his wonders in the deep.
25 For He spoke and raised up a stormy wind, which lifted up the waves of the sea.
26 They rose up to the heavens, they went down to the depths; Their soul melted away in their misery.
27 They reeled and staggered like a drunken man, and were at their wits' end.
28 Then they cried to the Lord in their trouble, and He brought them out of their distresses.
29 He caused the storm to be still, so that the waves of the sea were hushed.
30 Then they were glad because they were quiet; So He guided them to their desired haven.
31 Let them give thanks to the Lord for His loving kindness, and for His wonders to the sons of men! Let them extol Him also in the congregation of the people, and praise Him at the seat of the elders

Unpredictable POTSy Presents

2011-10-09T08:41:00.000-07:00

I LOVE surprises! The unexpected card in the mail. A sink full of dishes magically cleaned by the cleaning fairy (my amazing daughter). Or one of my favorites, a picture drawn by one of my students showing us eating chocolate cake together because she knows it's my favorite! Surprises are great from everyone with one exception, my evil arch nemesis POTS which seems to have a dark view of how I like to be surprised.

After three years of having POTS I'm still surprised by the unpredictability of POTS. I've learned what kinds of things trigger Mr. POTS and try to avoid them like the plague. Over the years I've become better at adjusting my activities to avoid a POTSy crash. It's the times when I've done absolutely nothing and become symptomatic that take me by surprise. For example; I'm on my computer and all of a sudden my heart is racing, I'm short of breath and dizzy. If you're thinking "hmmmm..... what web site is she looking at?", no I'm just reading posts on Facebook. This week it happened during a staff meeting at work. The principal had given us some reading on educational practices. All of us were reading quietly when my heart began racing, I became short of breath, dizzy and the words became blurred and unreadable. All I wanted to do was curl up in a back corner of the room. I didn't have my purse with me and needed to get some salt in me ASAP, but there was no way I could walk to my classroom without ending up on the ground somewhere on campus. Luckily I was sitting next to a close friend who went to my classroom for my purse. My inspiration for writing this blog is the fact that right now I should be sitting in church with my church family enjoying a good sermon but my heart rate is 160 and bp is 90/75. I'm in no condition to drive or sit for long periods of time. As I write I've taken several breaks because sitting for too long makes me worse. Seriously POTS your timing sucks!

Another unpredictable part of POTS is the knowledge that it can take a turn for the worse which could leave you hospitalized or even lead to death. One day your sharing "normal" POTSy posts with your friends, the next day you hear that they are in the hospital and you pray for a quick recovery for your friend and a couple days later they have died from complications. This month complications from POTS has taken two very young woman. My prayers are with their families and friends who have lost a precious part of their lives. Death is a reminder to love those closest to you. To be thankful for what we DO have. To appreciate what we CAN do and to live every moment to it's fullest.

Inspired to dance in the storms of life,
Michele

Ecclesiastes 3:1-8
There is an appointed time for everything. And there is a time for every event under heaven-
A time to give birth, and a time to die;
A time to plant, and a time to uproot what is planted.
A time to kill, and a time to heal;
A time to tear down, and a time to build up.
A time to weep, and a time to laugh;
A time to mourn, and a time to dance.
A time to throw stones, and a time to gather stones;
A time to embrace, and a time to shun embracing.
A time to search, and a time to give up as lost;
A time to keep, and a time to throw away.
A time to tear apart, and a time to sew together;
A time to be silent, and a time to speak.
A time to love, and a time to hate;
A time for war, and a time for peace.

Lord, give me the wisdom to know how to spend the precious time you have given me.
Amen

Dysautonomia Normal is normal

2011-09-17T10:48:00.000-07:00

When I first wrote this blog I began writing because my "normal" life had changed so drastically. I began writing because I was scared, angry, shocked, and frustrated with a disease that took me a couple of weeks just to learn how to pronounce it and doctors who didn't know how to treat it. The changes to my reality of who I was and who I was becoming where overwhelming and polar opposites to each other. I went from an energizer bunny to a couch potato. I was someone who rarely took an aspirin to a person dependant on medication just to stand up. I rarely went to a doctor to someone who needed a calendar app to keep up with the many doctor appointments and tests. I use to take off on a whim and now I have to carefully plan around the weather and my health. It also seemed like I would just start to get a grip on how to deal with my illness when a new symptom would pop up.

There are so many difficult adjustments to make with dysautonomia. Adjusting became my normal. Adjusting to the heat, adjusting to the nausea, adjusting to the fatigue and constant pain, and adjusting to silly things like compression stockings. I had to adjust from feeling pretty good one day to crashing for no reason the next. Adjusting to medications that cause side effects that are sometimes more difficult than the illness itself and I often had to choose being able to stand up over the desire to jump in front of a car for no reason except the meds seemed to think it was a good idea. For a control freak all this adjusting was quite an emotional roller coaster.

I have to say dysautonomia has given me some really great life lessons. I've learned to appreciate my health because even though I may be feeling really bad, there is always someone out there who is feeling worse. I've learned to appreciate being able to work at a job I love because I never know when I will no longer be able to work. I've learned to appreciate everything I can do because even being able to do chores is missed and it's not always easy to ask someone else to do it for you. I've also met some amazing woman with dysautonomia on my journey who have helped me feel that I wasn't alone. And I've learned to laugh and smile because every moment is precious and sometimes it's easier to laugh at the difficult moments than it is to whine and complain about them.

For now dysautonomia seems to be taking a back seat in my life. I've learned how to adjust to the oddities of this illness and appreciate what I have now because it might be taken away.

Inspired,
Michele

Jeremiah 29:11
For I know the plans I have for you, declares the Lord, plans for welfare and not for calamity to give you a future and a hope.

Psalm 100:4
Enter His gates with thanksgiving and His courts with praise. Give thanks to Him; bless His name.

My favorite verses.

I'm Melting!

2011-08-27T10:22:00.000-07:00

It's that time of the year again. Time to write my blog on heat and dysautonomia. Thankfully Southern California has been behind the times for hot Summer weather. Every day I said a prayer of thanks for the unseasonably cool Summer and dreading the day when the temperature would rise above 80 degrees. That dreaded day has finally come, and it's brought along a friend named humidity just to rub it in.

Heat has become one of my biggest enemies. When the temperatures go up my POTS symptoms soar right along with it. Hello increased heart rate, dropping bp, head aches, fatigue, shortness of breath, the increase chance of fainting, and that all so wonderful polly juice experience of my blood feeling like it's bubbling just below my skin. At times I feel like the witch from The Wizard of Oz, screaming "I'm melting!". Just my face whispering from a puddle that once was my body.

I do have a few weapons to help me fight the heat. I love my Artic Heat ice vest, a bit ugly but very cool. I just pull it out of the freezer when I need to take short trips outdoors or when I can't seem to cool my house down (I don't have central AC so I depend on two room AC's). I drink lots of water, so much that if you poke a few holes in me I convert to a watering can. I take extra salt tablets because I'd have to eat 5 bags of potato chips to get the salt I need. I stay indoors like a hermit and shut my house up like a bat cave. If it gets really bad I take a cool shower imagining I'm taking a swim at a luxury hotel with a cabana boy waiting to hand me my towel, a girl can dream! The heat is also a good excuse to load up on chocolate ice cream and mango smoothies. And most important,I say a prayer that God keeps me safe on these difficult days. Preparing for a hot day is much like preparing for a trip abroad, if you forget one important detail ( a passport or salt tablets) and your day or your trip can go very wrong.

Inspired,
Michele

Isaiah 25:4-5
For Thou has been a defense for the helpless, a defense for the needy in his distress, a refuge from the storm, a shade from the heat, for the breath of the ruthless is like a rain storm against a wall. Like heat in drought. Thou dost subdue the uproar of aliens; Like heat by the shadow of a cloud, the song of the ruthless is silenced.

The Elephant in the House

2011-08-14T15:35:00.000-07:00

Some time in my teen hood I realized I was not like all those other teens striving to fit in. I wasn't normal nor was there anything about me that seemed to fit societies picture of "normal". I lived in a home where a giant white elephant tromped around my house (alcoholism). Everyone around me tip toed around the house trying their best not to disturb the elephant and acting as if the elephant didn't exist. Thinking I was the only person in the world living with a white elephant I put myself in the "abnormal" category and I saw everyone around me as "normal". It kind of gave me the freedom to allow myself to be different, to dress different and free of having to meet the social expectations of everyone around me. It wasn't until I was much older that I realized that pretty much everyone has some version of an elephant living in their home and that "normal" is shaped by our perception.

I know living with a white elephant has prepared me for my journey with POTS. Growing up never knowing what to expect from one moment to the next has definitely prepared me for the varying symptoms of POTS. Feeling barfy one day then not barfy the next but experiencing heart rates in the 150's all day instead. Growing up feeling like no one could ever understand what it's like to live with a white elephant is similar to having POTS where most doctors don't understand what I have so how can I expect those around me to get it either (though it does help to communicate and educate those around me). Living in a home where things were pretty bad most of the time I learned to find joy in the little things around me. Seeing a beautiful flower on the way to school turned a really tough morning into a very special one. Being able to find joy in the most unusual places has helped me cope with those difficult POTSy days. Maybe being a POTSy mom is my children's white elephant. I can only pray that it does change their character. That it shapes them into caring empathetic adults. I hope they can appreciate every moment and look for the rainbow at the end of a storm.

I have a great teaching job, a nice home, a decent car, a son and a daughter who are working and attending college, two dogs and a cat. From the outside I don't look sick and seem to fit in societies idea of "normal". I don't believe I was born to be normal or ordinary. POTS isn't normal or ordinary either. So Michele and POTS seem to be a perfect match.

Inspired to be extraordinary.
Michele

Ecclesiastes 7:14
In the day of prosperity be happy, but in the day of adversity consider God has made the one as well as the other so that man may not discover anything that will be after him.

Doctors and Lawyers and Insurance companies, oh my!

2011-07-28T07:42:00.000-07:00

It's been a busy week for this POTSy gal. It's a good thing I'm on vacation because I don't know how I would have made it through had I been working. The week started out with me fighting with the insurance company for reimbursement for insulin for my daughter. By the time I was finished speaking with the representative my daughter had to come between me an the wall I was ready to bang my head against. Thank you Megan! Then later in the week I had the daunting task of trying to remain calm with my lawyer concerning a loan modification that was applied for over a year ago with no results so far. But I have to say the best and most entertaining part of my week had to be the numerous and unique doctors appointments I went to and plethera of test I was given.

On Monday I visited the pulmonary specialist to have a series of lung capacity tests. This very nice technician hooks me up to a tube connected to a machine and demonstrates the testing process. So I try to mimic here example and when I blow the mouthpiece shoots out of my mouth. We both look surprised and she shows me again how to breath and blow. This time I have my teeth locked down to the mouthpiece and I breath and blow. She encourages me to keep blowing until I think my eyeballs are going to pop out and I'm going to blow a gasket or pee my pants. The test took twenty minutes and I survived without blowing a gasket or wetting my pants woohoo!

On Wednesday I had my MRI. MRI's have never bothered me in the past. The technician offered me earplugs which I've never been offered before, but when I refused them the technician was very insistant that I wear them. She went on to explain that the machine is louder than most. I took her advice and was thankful that I did. The machine was VERY loud even with earplugs! As I lay there I did what I always do, which is to close my eyes, relax and turn the various clinks and bangs into music. I'm so glad I was listening to Generator by The Weathervanes on my way to the MRI. The rythme of the MRI sounds were easy to interpret into that song. But then something unusual happened during the MRI. The machine began to thump and vibrate. I felt like the rotating plate in a microwave which has slipped off the rotating wheels and begins to thump continuously against the wall of the microwave. Then a new song popped into my head The Microwave Song by Softlights
"http://www.youtube.com/embed/85mgifwuYTs"
That song just wouldn't leave and by the time I finished playing that song in my head I was in my happy place and the MRI was over.

Thursday was my appointment with Dr. Frankenstein (my neurologist)for the nerve conduction test, which I like to call shock and needle pricking test. A technician came in to administer the shock part of the test. He chuckled when I told him that "I wondered if he grew up wanting to shock people for a living?" he laughed he answered "yes" Ew! I guess someones has to do it. While he was shocking me in various places on my body I couldn't help giggling over the fact that my hands and feet were twitching bazaarly after every shock. Every time I giggled the technician would shake his head with what I can only surmise as disappointment over the fact that I wasn't wreathing in agony. When we were finished he told me he has never had a patient respond to the test the way I had (I'm not sure if that was an insult or a complement). Next my doctor came in to administer the needle pricking part of the examination. My doctor seemed to enjoy administering this part of the test a little too much. He was putting so much gusto into sticking me with the needles that I was sure his target was to stick that needle right through me in order that I become a human shish kebob. While the doctor was having his fun I asked him "when you were in medical school did the students practice administering this test on each other?", he smiled and said "yes". I can just imagine the Medical school neurology teacher telling her students "tomorrow we will be shocking each other and sticking each other with needles". Did the class erupt in cheers? Hmm, I guess I'll never know. He told me I was the first person who preferred the nerve conduction over the needles. I guess that makes me special! I left the office finding out I have some technical term for neuropathy in my outer left leg and foot and carpal tunnel in my right hand (which was quite a surprise). I left with confirmation of a condition I knew I had with no answers to how to fix the problem (except for the carpal tunnel which I didn't even know I had).

On Friday my neuro called to inform me my brain looked "normal" on the MRI. Personally I don't think there's anything "normal" about my brain, but I don't think a neuro is the best person to confirm that LOL. I feel like I'm living under a microscope with all these test this week, I think I'm ready to go back to work and take a vacation from this sicko vacation.

Inspired, Michele

Psalm 16:1

Preserve me, O God, for I take refuge in Thee.

Stress and Exercise

2011-07-19T10:28:00.000-07:00

If you've read my last blog, you might have noticed I'm a bit stressed out. Stress and dysautonomia are not a good mix. Tense muscles, tension headache and anxiety usually lead to raised heart rate or blood pressure and sure to follow with a POTSy crash. Sensing a battle zone was about to march across my body I decided to form a preemptive strike and thought it might be a good idea to do some exercise and work out the stress build up.

Oh my goodness I had no idea how tense my body was! My body was unyielding and about as flexible as a thick bar of steal. Only superman would be able to bend this body (hummm... visions on superman's arms wrapped around my body gently.......oops, got a bit carried away there). So, where was I? Oh yeah my tense body, my neck was so tense I could barely touch my chin to my chest and my body seemed to fight every movement I made. Each joint snapped crackled and popped as I moved. Within five minutes every muscle was shaking in protest to the usually easy workout sequence. My jaws were so tense that I didn't realize I was holding my breath until the room began swaying as if I was on a boat in the middle of a hurricane. Now with every part of my body in mutiny I almost bend to the clawing of my will power that's threatening to quit. But being the stubborn German that I am I sternly force my body back into rank and finish up the torturous ending to my workout.

The workout did seem to relieve the stress in my muscles. Unfortunately Barnacle POTS decided to crash in on my victory dance, so I'm dragging myself to bed along with barnacle POTS. I'm really praying God sends me a better bed partner!

I should know better than to allow stress to take over. Stress is bad for "normal" people, it's a double whammy for us POTSies. I need to remember that God has taken me through so many trials that put this one to shame. I need to let go, trust God and look for the lesson in this.

Inspired,
Michele

Esther 4:1
When Mordecai learned all that had been done, he tore his clothes, put on sackcloth and ashes, and went out into the midst of the city and wailed loudly and bitterly.
Esther 9:22
because on those days the Jews rid themselves of their enemies, and it was a month which was turned for them from sorrow into gladness and from mourning into a holiday; that they should make them days of feasting and rejoicing and sending portions of food to one another and gifts to the poor.

Frustrated!

2011-07-19T07:59:00.000-07:00

This has been one of those weeks, a week full of frustration and stress. Several times this week I was the screaming woman with my hands in my hair yelling ahhhh at the top of my lungs. Dealing with insurance slugs who seem to only have one day a week they can input data (what century are we in?) and they seem to think we don't need insurance because we have ATM's in our living rooms. Then there's the loanbots who seem to be reading from cue cards and offering no answers at all. And finally the phone droids that send us on a labyrinth of button pushing and long periods of being on hold while forcing awful music in my phone receiver. And who needs the stress of deciding between pressing #2 or #3 which could lead to losing hours of time and having to start all over again. This is not my idea of how I want to spend my Summer vacation. To top things off my house and car seem to have decided to fall apart just to add a little salt to the wound.

Well, now all things technical have also joined the lot. Last week I was merrily writing my blog. I was almost finished and wanted to add a web page, I exited my blog thinking I saved it only to find most of it gone when I returned. Ahhh, this was the final straw, my brain was kicking and stamping like a two year old. I couldn't finish my blog and at that point believed I would never go back. It took a week to calm down and I'm not sure if I will go back and finish that blog. My printer doesn't want to print invitations to my new kindergarten class. And my computer appears to have POTS because it acts like it has brain fog every time I get on the web!

Things seem to be looking a bit grim, but I know they could be much worse. It's time to get out my thankful journal and reflect on the good things in my life. And if that doesn't work can can always close my eyes and go on a virtual vacation.

I did want to include the web site that lead to my blog meltdown. I've always felt I needed another anatomy/physiology/neurology course to help me better understand what's going on in this POTSy body of mine and this site explains things in layman's terms with even a few Star trek examples (which won me over immediately).
http://heavenleigh412-ivil.tripod.com/id18.html

Inspired,
Michele

John 14:27
Peace I leave with you: My peace I give to you; not as the world gives, do I give to you. Let not your heart be troubled, nor let it be fearful.
One of my favorite life verses. Sometimes stuff happens and I need to let go and let God.

Counting Sheep

2011-07-17T14:38:00.000-07:00

I'm walking on the beach, a cool breeze blowing, the smell of the ocean, birds flying overhead, the waves gently crashing and flowing softly over my feet. When suddenly I find myself gasping for breath and my heart beating through my chest. No I haven't been hit by a tsunami, instead I find myself in my bed trying to recover from an adrenaline rush. I close my eyes and try to slow my heart and breathing down. It's 3 am and I need to get back to sleep so I try to focus my thoughts on that beach I was just walking on but my body says "No way, I've just run a marathon and I DON'T WANT TO GO TO SLEEP!" I try counting sheep, rolling over trying to finding that perfect sleeping position and I still can't sleep! I get up, make some chamomile tea and try to read myself to sleep but nothing works. Unfortunately the less sleep I get the more symptomatic I become.

After days of waiting for Mr. Sandman to stop by my house and trying every natural method of sleep remedy I can find on the Internet, I decide I need to let my doctor know I need some help. Asking for sleeping medication is not how I want to handle this. I have always been against taking medication. I was the girl who didn't take aspirin when I had a head ache. Medications of any type or form freak me out. I'm sure my "say not to drugs" attitude stems from a book a read in my teens call "Go Ask Alice", in which a girl with everything going for her gets hooked on drugs. Many of the scenes in the book were frightening and left me suspicious of all drug forms. Too bad all teens are not so impressionable, one book would wipe out generations of drug addiction. I describe the sleeping issues along with the fact that sleep loss is making my POTS symptoms worse and my doctor agrees that I definitely need sleeping medication. She prescribes Ambien and I finally get my first full night of restful sleep since my POTS diagnosis. There are some good medications out there with a purpose, it's when we abuse the medications that it becomes a problem.

It's kind of funny, last month I had a visit with my new GP. I needed to refill several of my medications including the Ambien. She was concerned that I have been on the Ambien for two years and that it is addicting. I told her I would love to get off of my sleeping medication, and that I really don't like being on any meds at all. I informed her that if she knew of a way to get rid of the adrenaline rushes that wake me and keep me awake that I would be more than happy to stop taking the Ambien. She turned around and began writing up my prescription. Praying for a cure so I can go back to my "say no to drugs" life style.

Inspired,
Michele

Matthew 11:28
"Come to me, all who are weary and heavy-laden, and I will give you rest."

Ms. Frankenstein

2011-07-06T15:52:00.000-07:00

Not sure why my doctor visits always inspire me to write. Maybe it's because I seem to always leave in shock or disappointment. It may also be that the human Guinna pig is still surprised by more test and more questions.

Today's visit to the neuro was a little more challenging than most. It was pretty hot and humid so extra precautions needed to be made to insure that I wouldn't end up in the ER due to a simple walk from my car to doctors office. With ice vest packed in the ice chest, a huge bottle of water, salty snacks and my e-reader I'm ready to go. Feels more like I'm getting ready for a picnic than a trip to the doctors office. I have a feeling my doctor thought so too. He gave me the raised eyebrow and a puzzled stare as he questioned the purpose of an ice chest for a doctors visit. I'm so wishing I'd packed a baguette, cheese, checkered table cloth and a bottle of wine! Instead I explained about the ice vest and the appointment was on its way.

As usual I had my list of questions concerning some of my POTS symptoms such as neuropathy, blood flow to my extremities and the adrenaline rushes. As usual I received the pat response from my doctor, "Studies are inconclusive as to why POTS patients have these symptoms, there are no answers". Well that visit was productive. The doctor does the typical vibrating tuning fork exam in which I'm not feeling many of the spots the tuning fork touches. He ends the exam by telling me he's going to run some "tests", oh no!!!!!! He orders an MRI and a nerve conduction study. He tells me to do a follow up with my GP to schedule a visit to see a vascular specialist. Wow, lucky me! And I'm out the door.

I head for home and jump on the computer to see what I have to look forward to with my nerve conduction study. www.WebMD.com informs me that the test is not evasive, but can be a little painful due to electrical SHOCKS! Seriously, I can just visualize Frankenstein standing over me while I'm hooked up to wires with his hand ready to pull the lever for my electrical shock study!. Who chooses shocking people as a career choice? I have to wonder what child tells his parents "when I grow up I want to shock people". I know if either I've my children made that announcement they would go straight into therapy.

I see adventure in the horizon. Who needs a vacation when I get to lay in a thumping tube and create imaginary music to the thrumming of the MRI machine. And just think I get to meet the person whose lifelong career choice is shocking people. Can't forget the camera!

Inspired,
Michele

2 Corinthians 1:3-4
Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of comfort; who comforts us in all our affliction so that we may be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God.

Virtual Vacation

2011-07-01T08:19:00.000-07:00

Sitting on facebook watching friends and colleagues posting themselves in various vacation destinations all over the world brought on a longing for a vacation of my own. Ticking off the reasons I couldn't make any long distance vacation plans was rather simple. I've taken a pretty steep pay cut this year (education cuts is always the first place politicians slash), and planning any vacation around my extreme temperature sensitivity and POTS symptoms is next to impossible. Being in a tight financial crunch and dealing with my POTS symptoms has become pretty blaze. I've pretty much given up on doing much of anything out of my comfort zone.

So I decided I would go on a virtual vacation instead. I could then share my virtual experiences with my blogging friends who might be in the same boat as I'm in. Who better to take a virtual vacation than myself! By the time I'm finished my creative brain will have such great stories made up that by the end of my virtual trip I'll really believe I've been to all the places I've written about! Why not, I could plan my dream vacation without spending a cent and no worries about POTS getting in the way. The more I thought about it the more excited I became. I could even learn how to use my photo shop and cut and paste myself in pictures of my favorite destinations. So I began doing a little homework: Has this ever been done before? Where would I go? If I could do or see anything what would it be? As I began researching I became more excited that I may be able to pull off a virtual vacation.

I started a list of my dream destinations;
*Cruise down the Nile with a tour of the pyramids and a camel ride.
*Go to France and tour castles, the Eiffel Tower and fashion houses.
*Visit Italy and check out the museums, tour Pompeii and Take a Gondola ride in Naples.
I began checking prices and tour itinerary and found out my trip down the Nile was out of the running due to civil unrest in Egypt, bummer that was my ultimate dream vacation. Though I haven't given up on the camel ride yet! So off I'm off to check France vacation sites. Many of the pictures of the castles in France were fuzzy and limited. If I'm taking a virtual vacation anywhere I need detailed pictures of my virtual destinations. I mean really, how am I suppose to visualize my handsome tour guide Jon-luc showing me the sites of France when I can barely make out the picture! Good-by France, maybe the next trip. Well the last on my list is Italy. I've always wanted to visit the ruins of Pompeii since my sixth grade teacher showed us slides of the ruins created by Mt. Vesuvius. With every click of the mouse I was getting more and more excited about taking a trip to Italy. I found a tour that included my most desired destinations. The itinerary as follows: Day 1 travel to hotel and tour group get together. Day 2 tours the Piazza Venezia, Colosseum and Arch of Constantine. Day 3 is a tour of the seaside town of Sorrento including a tour of a buffalo milk mozzarella factory (I mean what's a trip to Italy without a buffalo cheese tour) and followed by a Greek temples tour. Day 4 is a boat trip to the Mediterranean Island of Capri (I can visualize me feeding the fish on that boat trip). Then day 5 is the most important tour of all, Pompeii. Day 6 takes you to Naples with a gondola ride.This trip sounds perfect and check this out, each dinner includes wine from a local winery!

Now that I have my virtual destination planned it's time to check out great photo sites, flights, hotels and I already know the tour I want is only $2100 per person and $2,600 with my 5 star hotel upgrade. I am not staying in and ugly hotel with no Italian ambiance on this virtual vacation. I found a site that allows you to print virtual airplane tickets and my virtual vacation is planned.

My children get home from their various activities and I share my brilliant vacation idea with them, I'm expecting a huge amount of enthusiasm on my creative thinking skills, but my daughter replies with "Wow, your special mommy" and my son raises his eyebrow and gives me the "I think my mom is losing it" look. The only one to share any sign of enthusiasm was my son's girlfriend and I can't help but think she may just be being polite to her possible future mother-in-law. Love you Bee!

Now I'm beginning to question the sanity of my virtual vacation. As I begin to ponder the realities of my "special" vacation I realize most of the fun is in the planning. How much fun could I possibly have photo chopping myself into pictures of places I've never been to. Where's the fun in writing about places and people I haven't seen, though I do have a pretty big imagination and a romance novel could be in the making. This doesn't sound like fun at all. Now what?

I really was excited about my trip. As I morn over a great idea gone wrong, a new idea springs into life. Why can't I have a California version of my dream vacation? There's no reason why I can't! Where do I start? How about the gondola ride? Naples is just around the corner and they have daily gondola rides and you can bring your own drinks and snacks! Architecture, what's in California that I haven't seen yet? I have always wanted to see Frank Loyd Wright's Hollyhock house in Hollywood, wow I'm getting excited! I also put the Tim Burton exhibition at the L.A. museum of art on my "to do" list. I think I'll add a trip to Rodeo drive to shop at some designer boutiques. And what is a California Italian vacation without a little Italian cuisine, The spaghetti factory or the Stinking Rose have great atmospheres and really good food. I think my itinerary is pretty full and I can take it at my own pace. Hmmm.... I think I'll add a a touch of Hawaii and make a visit to Duke's for a slice of hula pie and a walk on the beach to top things off. Sounds like an amazing vacation to me!

Who says you have to spend lots of money and travel to distant lands to have a great vacation.

Inspired,
Michele

Proverbs 25:25
Like cold water to a weary soul, so is good news from a distant land.

The Ritz

2011-06-23T18:44:00.000-07:00

Today I found myself losing a battle with my heart rate that didn't want to go down below 166. My oxygen deprived head was focused enough to know I needed assistance. But after my last experience with the ER, I refused to go back there again as long as I'm conscious. So I called my new HMO provider to see if they had an Urgent Care Clinic. After pushing several buttons to connect me with a real live person they merrily informed me that they had an UCC and that it was open. Woohoo, I grab my keys and head for the clinic. It isn't exactly the smartest idea to drive myself considering my brain is quite oxygen deprived and I'm shaky, but I make it there safely.

I head to the front desk and inform them I need to have my heart rate checked along with my blood pressure, they proceed to ask me for medical cards and id. I hand it over and can no longer stand. So I head for the closest chair and place my head between my knees. A nurse heads over and I'm immediately whisked into a wheelchair and rolled into an examination room. They begin to check my vitals and and attaching ekg stickies on my body. A few minutes later the doctor walks in and checks my vitals, which are high and begins asking questions. I briefly explain to him that I have POTS and what my symptoms are, which he sadly replies that he's never heard of it and ask me what usually works best when I get this way? I immediately love his honesty and his respect for me as a patient who may know something about my condition. I tell him oxygen and an iv usually work best. He orders them and heads out the door. A nurse walks in a few minutes later and asks if I need anything. I ask for some water and she's back in a minute with a cup with a bendy straw! She hands me a tv remote and turns on the TV for me. I'm beginning to realize that the service is pretty good here, but I'm still wary. A few minutes later the doctor comes in and tells me he's read through my medical history and that they have all my tests, doctor and hospital records since my POTS diagnosis (which they requested in October). The doctor then told me he did some checking and there isn't allot of information out there to help him treat me (totally in awe that he did some research on his own). He wants to run some blood work to be sure there isn't anything else wrong and he'll be back to check on me a little later. In my head I'm thinking "Right, I'll have to chase him down and tie him up with my iv tube and drag him back to my room." They draw my blood which takes two people to squeeze my arm to get enough blood to fill the little tubes (not sure what that was about). The nurse notices my left arm and hand are unusually cold and blue and brings the doctor back in to double check "wow, he's back!". He gives me the crooked eyebrow and says "I hear there's another symptom". I tell him it's something I'm use to it so I didn't think it was worth mentioning, he decides to add a few more blood tests (great). As I wait for the lab results and iv to empty I notice that the nurse seems to be checking on me every 5 minutes and asking if she can get me anything. I lay back and smile as I'm watching a cooking show and beginning to get hungry. The nurse peaks in again and I joke about being hungry and she tells me she'll check to see if they have anything! She comes back and tells me I have a few options, and I choose trail mix. As I'm sipping from my bendy straw, eating my trail mix and watching Rachel Rays 30 minute meals, I feel very pampered. This definitely feels like the Ritz compared to my last ER visit. The only thing that would have made the experience better is if I had a cabana boy checking in on me! Hmmmm a girl can dream! My new HMO's UCC is a wonderful perk, and I'm beginning to feel that having an HMO isn't half as bad as I thought it would be.

Inspired,
Michele

Luke 22:35
And He said to them, "When I sent you out without purse and bag and sandals, you did not lack anything, did you?" and they said "No, nothing."
God always provides!

Abs of Steel!

2011-06-12T12:30:00.001-07:00

Last week I decided the "muffin top" over my jeans is no longer acceptable and something must be done to alleviate the problem. I need to find a way to diet without obsession and exercise without passing out. I saw one of those infomercials with the workout diva's with a size 2 body and perfectly flat bellies advertising that anyone can have perfectly sculpted abs if they just purchased their workout DVD. So I thought to myself "I need to do something so why not give this a try, besides if I can do it I'll have ABS OF STEEL by the end of the summer!"

Since I've been diagnosed with POTS I had to quit working out. I use to be a workout diva myself before POTS. After my diagnosis I tried to work out but would become dizzy, short of breath and the raising of my heart rate just plain freaked me out, not to mention the fact that my heat intolerance usually would send my body over the top. Well it's been three years since my last workout and my body has become soft. A marshmallow is in better shape than I am. I need to get past my fear of exercising and give it another try.

I decided to take my workout experience a little differently. I need to face the fact that my body IS different and I need to give myself some grace to accept that I will not be able to do some things on the DVD. I need to be OK with stopping or changing up the workout to fit MY needs. I need to listen to my body and I don't have to do things exactly as the program instructs (this was designed for the healthy not someone with a chronic illness).

Last night I decided to give my new Crunchless Abs DVD a try. I took a salt tablet, filled up a big bottle of water, turned on the A/C and attached my workout theraband to my door. I pressed play and began the warm up followed by several different exercises and stretches. At times there would be something that required bending over (which I can't do) so I would repeat other reps previously done instead. At one point I became dizzy and had to sit on the floor with my head between my knees. As I'm trying to catch my breath, I could hear workout diva saying "keep going, I'm right there with you, I know what your feeling!" I giggled in my head "no, I don't think she's feeling what I'm feeling right now, nor would she ever be humbled into the head between the knees position". I finished the program on my terms and felt good. It felt really good to have a fine film of perspiration on my body, and I felt really good the next day.

I'm praying I can keep this up. The doctor has always encouraged exercising, but my one bad experience kept me in fear of trying again. I'm so glad I gave it another try. I'm even thinking of taking a before and after picture just like they do in the advertisements.

Inspired,
Michele

Romans 15:13
May the God of hope fill you with all joy and peace in believing, that you may abound in hope by the power of the Holy Spirit.

Mutant POTSy Malady

2011-05-31T21:14:00.000-07:00

I have to say that my hands seem to be my biggest visual shock from POTS. When I'm having a bad POTSy day I'm constantly taking a second look. They're quite shocking at times. I often think I'm looking at the hands of the living dead, black, blue and mottled. It may be the start of some mutant zombie transformation. In sharp contrast to my lily white legs they surely can't belong to me! My hands would look better on Sally in the movie Nightmare Before Christmas than they do on me. In fact I think her hands would make a more attractive match on me! I'm beginning to fear bedtime lest my hands detach themselves and strangle me in my sleep. Or maybe they'll crawl under my bed and attack my ankles during my nightly run to the ladies room. And the pain, it feels like I've stuck my hands in the icy snow for several minutes. I can hear Smeagol (Gollum from the Lord of the Rings) whispering "they bites us and pricks us my precious".

Hmmm.... wondering what tomorrow will bring! Rainbows would be a nice oddity. I think rainbow ears would be fun! If I place my order in advance maybe I'll get a choice of the next mutant POTSy malady. POTS does make for some interesting writing topics.

Inspired,
Michele

Proverbs 10:4
Poor is he who works with a negligent hand, but the hand of the diligent makes rich.

POTSy Monopoly

2011-05-30T16:58:00.000-07:00

Having POTS is like playing a game of Monopoly, acquiring the rare Boardwalk card would be compared to a symptom free week and drawing the Mediterranean card is like landing in the hospital with some symptom of POTS gone terribly wrong. The pale face players are familiar, they're my POTSy FaceBook friends. Each roll of the dice sends dread to the roller and all those playing. Will it be a good week or bad?

Having POTS and being involved in several support groups on Facebook has connected me with many awesome woman who I've grown to care very deeply for. We share our ups and downs, we share what's working for us and cover one another in prayer when needed. But I have to admit it is difficult at times to watch the lives of these woman go from good months of travel, work and "almost normal" activity to a POTSy crash that lands them in the hospital many times worse than they started. Having POTS is like rolling a dice and not knowing if this is the day that "almost normal" will take a devastating turn to kidney failure, pacemakers or feeding tubes. I worry for my friends, but in the back of my head I'm asking "when will this be me?" There are times when my friends completely disappear off Facebook, and I wonder are they feeling better and enjoying life with no need to check Facebook or are they too sick to post.

I sometimes ask myself if it might be better to quit Facebook so I wouldn't be so affected by how my friends are doing, but then what would I do? Read a book or watch braindead TV? Hummm that's uplifting. These support groups give me the opportunity to uplift others, pray and share my experiences as well as get my questions answered and be uplifted and prayed for when I'm in need. I know worrying about what hasn't happened yet isn't smart and a waste of time and energy. I need to focus on today. Today I have mild to moderate POTS symptoms, my meds work better for me than most and I'm able to work. Today I can uplift others, share and pray.

Some day I'll be able to burn that Obnoxious POTSy Monopoly board, throwing each card labeled with an obnoxious symptom into the roaring flames while doing the happy dance around the flames.

Inspired,
Michele

Matthew 6:34
Do not be anxious for tomorrow for tomorrow will care for itself. Each day has enough trouble of it's own.

Article For a Friend

2011-05-25T19:49:00.000-07:00

My friend Trace has a genetic form of dysautonomia and did some research on a new experimental drug. Posted it for those who want to check it out.

Article
And here's more info

Chelsea Therapeutics Announces Northera Poster Presentations and Symposium on Neurogenic Orthostatic Hypotension at MDS 15th International Congress of Parkinson's Disease and Movement DisordersMon May 2, 2011 7:30 am | about: CHTP Font Size: PrintEmail Recommend 0 Share this page
Share9 NEWS PROVIDED BY:
GlobeNewswire
Dr. Robert Hauser to Present Late Breaking Poster Highlighting Efficacy of Northera in Patients with Neurogenic Orthostatic Hypotension associated with Parkinson's Disease on June 8th 2011
Dr. Gregor Wenning to Present Poster on Safety and Efficacy of Northera in Multiple System Atrophy on June 8th 2011
Chelsea to Sponsor Symposium Reviewing Results from Northera Clinical Program in Neurogenic Orthostatic Hypotension on June 9th 2011
CHARLOTTE, N.C., May 2, 2011 (GLOBE NEWSWIRE) -- Chelsea Therapeutics International, Ltd. (Nasdaq:CHTP) announced that two posters describing the clinical benefit of NORTHERA" (droxidopa) have been accepted for presentation at the Movement Disorder Society's 15th International Congress of Parkinson's Disease and Movement Disorders June 5-9, 2011 at The Metro Toronto Convention Centre, Toronto, Ontario, Canada. In addition to the two posters presentations, Chelsea will sponsor a symposium detailing the clinical results of Northera for the treatment of neurogenic orthostatic hypotension (NOH) at 12:00 pm on June 9, 2011.

The following poster detailing results from Northera Study 306A has been accepted as a late breaking submission and will be presented by the study's principal investigator, Dr. Robert A. Hauser, on June 8, 2011 from 1:30 pm 3:00 pm ET:

"Efficacy of Northera (droxidopa) in Patients with Neurogenic Orthostatic Hypotension associated with Parkinson's disease (PD)," Robert A. Hauser (1) MD, Ramon Gil (2) MD and Stuart Isaacson (3) MD. Tampa (1), Port Charlotte (2), Boca Raton (3) Florida, USA. Abstract Number: LB21

In addition, the following poster will be presented during Poster Session III, June 8, 2011, from 9:00 am - 6:00 pm ET:

"Safety and efficacy of Northera (droxidopa) in Multiple System Atrophy," Gregor K Wenning, MD, PhD MSc1, Horacio Kaufmann, MD2, Christopher J Mathias, D.Phil, DSc, F.R.C.P3 and Pietro Cortelli, MD4. 1 Division of Clinical Neurobiology, Innsbruck Medical University; 2 NYU Medical Center; 3 Division of NeuroScience and Psychological Medicine, Imperial College of Science, Technology, and Medicine at St Mary's London and 4 Department of Neurosciences, University of Bologna. Abstract Number: 778

Chelsea will also be sponsoring a symposium, featuring a panel of academic thought leaders and experts in the field of movement disorders, to review the role of norepinephrine in primary autonomic failure, clinical findings and therapeutic opportunities for Northera in neurogenic orthostatic hypotension. The session being held on Thursday, June 9, 2011 at 12:00 pm ET will be moderated by Joseph Jankovic, MD, Baylor College of Medicine, Houston, TX, and will include the following presentations:

The Role of Norepinephrine in Primary Autonomic Failure associated with PD, MSA and PAF

Peter LeWitt, Southfield, MI, USA

Focus on NOH and Autonomic Failure in PD
Northera (droxidopa) Phase III Clinical Data

Gregor Wenning, Innsbruck, Austria

Clinical Trial Considerations for Neurogenic Orthostatic Hypotension (NOH)
Study 301 Results
Orthostatic Hypotension Questionnaire (OHQ)
Symptoms; Activities of Daily Living
Preliminary patient falls data
Northera (droxidopa) 306A Clinical Data

Robert Hauser, Tampa, FL, USA

OHQ and Falls
Movement Disorder Society Unified Parkinson's disease Rating Scale (MDS-UPDRS) scores
Hoehn & Yahr scores
Prospective study in 306B
About Neurogenic Orthostatic Hypotension

NOH is a neurogenic disorder resulting from deficient release of norepinephrine, the neurotransmitter used by sympathetic autonomic nerves to send signals to the blood vessels and the heart to regulate blood pressure. This deficiency results in lightheadedness, dizziness, blurred vision and fainting episodes when a person assumes a standing position. Symptoms of chronic NOH can be incapacitating, not only putting patients at high risk for falls and associated injuries, but also severely affecting the quality of life of patients and their loved ones. The only FDA-approved treatment for orthostatic hypotension has a black box warning indicating that the drug has not been shown to be effective in alleviating the symptoms of the condition and is associated with a pronounced side-effect profile including significant supine hypertension.

About Northera

NORTHERA" (droxidopa), the lead investigational agent in Chelsea Therapeutics' broad pipeline, is currently in Phase III clinical trials for the treatment of symptomatic neurogenic orthostatic hypotension (NOH) in patients with primary autonomic failure a group of diseases that includes Parkinson's disease, multiple system atrophy (MSA) and pure autonomic failure (PAF). Droxidopa is a synthetic catecholamine that is directly converted to norepinephrine (NE) via decarboxylation, resulting in increased levels of NE in the nervous system, both centrally and peripherally. Droxidopa is also being studied for the treatment of fibromyalgia in an ongoing Phase II trial and completed a Phase II trial in intradialytic hypotension (IDH) study with positive results.

About Chelsea Therapeutics

Chelsea Therapeutics is a biopharmaceutical development company that acquires and develops innovative products for the treatment of a variety of human diseases. Chelsea's most advanced drug candidate, NORTHERA" (droxidopa), is an orally active synthetic precursor of norepinephrine initially being developed for the treatment of neurogenic orthostatic hypotension. In addition to Droxidopa, Chelsea is also developing a portfolio of metabolically inert oral antifolate molecules engineered to have potent anti-inflammatory and anti-tumor activity to treat a range of immunological disorders, including two clinical stage product candidates: CH-1504 and CH-4051. Preclinical and clinical data suggest superior safety and tolerability, as well as increased potency versus methotrexate (MTX).

This press release contains forward-looking statements regarding future events. These statements are just predictions and are subject to risks and uncertainties that could cause the actual events or results to differ materially. These risks and uncertainties include risk of regulatory approvals, including our planned NDA for Northera; risks and costs of drug development, including the uncertainty of cost, timing and outcome of clinical trials like Study 306; our reliance on our lead drug candidates Droxidopa and CH-4051; our need to raise operating capital; our history of losses; reliance on collaborations and licenses; intellectual property risks; competition; market acceptance for our products, if any are approved for marketing; and reliance on key personnel including specifically Dr. Pedder.

CONTACT: Investors & Media:
Kathryn McNeil
Chelsea Therapeutics
718-788-2856
mcneil@chelseatherapeutics.com

Source: Chelsea Therapeutics 2011 GlobeNewswire, Inc.

Hopefully this will be the new drug that will cover all of us dys pateints!

Inspired,
Michele

Party Leftovers

2011-05-21T18:53:00.000-07:00

For some reason this week I've been comparing myself to party leftovers. You know.... those things you throw in the trash after the party is over; the shredded pinata, deflated balloons, and the drink saturated napkins. All looking quite stunning before the party, all carefully chosen and meticulously placed. Only to be thrown hurriedly into the nearest Hefty garbage bag as soon as the party comes to an end.

It all started on Tuesday night after my open house at my school. After many weeks of working with 32 kindergartners on special class projects, cleaning the room, prepping bulletin boards and binding student work it was all over in an hours time. It left me feeling like a shredded pinata that has been joyfully hit with a large stick by many exuberant children on a mission to be the one to burst it open and the first to grab handfuls of candy. There wasn't a part of my body that didn't feel achy and bruised.

On Thursday I had a School Site Council meeting and two parent/teacher conferences. When I got home all I wanted to do was get in bed and hide. That night my oxygen levels felt low, tingling arms and lips with a side order of brain fog. I felt like a balloon that has been deflated, completely stretched out of shape and wishing for more air.

On Saturday I had a wedding shower I was looking forward to going to. When I got there I felt pretty good, all of my closest friends were there and it sent my spirits soaring to see them and connect with each of them. When I walked in everything was lovely, all carefully thought out and prepared. As the party carried on my body began to rebel. My body doesn't seem to appreciate sitting for any length of time and church folding chairs are not the most comfortable. Sitting in one for more than 10 minutes can make the sturdiest hiney squirm. The noise level seemed to increase as each minute passed as everyone was laughing, sharing and enjoying one another all I wanted to do was to flee to my soft bed and take a nap because my body had finally hit overload. As I headed out the door to leave, I passed a sopping wet napkin and thought to myself that it looked how I felt, overused and a shapeless clump ready for the nearest Hefty trash bag. As I headed for home I began feeling resentful that POTS seems to be stealing the things I enjoy most

Party leftovers seems to be an ongoing theme for how I've been feeling the past month. All I seem to want to do is curl up in bed with a good book. It's times like these that I loath myself the most, I should be joyful and thankful for this precious life I've been given, but all I want is an overhaul and my life back as it was. Having a pity party and looking for the Hefty bag!

Michele

Psalm 26:2
"Cross examine me, Oh Lord, and see that this is so; test my motives and affections too"

Happy Birthday-3 years with my new POTS "normal"

2011-04-30T09:19:00.000-07:00

*Dropping heart rate-check
*Rising BP-check
*Dizzy-check
*Short of breath-check
*Nausea-check
*Blurred vision-check
*Brain fog-check
*Fatigue-check

All is "normal".

It's amazing after living with POTS for three years I've grown quite accustomed to my new POTSy "normal". Going from a healthy energizer bunny type to a blechy couch potato is not meant for the "faint"hearted (ha-ha-ha). I began this journey on a retreat in Big Bear on April 27th 2008, with a quick diagnosis on May 7th 2008. It's been quite a journey and I've learned allot from it.

The first two years I feel were the hardest for me. I compare it to being a new mom the first couple months with my new born son Sean. Every squeak, whimper, cry or rise in temperature he had I imagined as a major catastrophe that needed an immediate consultation with his pediatrician. My son's pediatrician was a Saint. I've mellowed out a bit since then, which I'm sure my current doctors appreciate. Fear was a constant with POTS. Each symptom was frightening and filled me with a sense of constant gloom and doom. Who wouldn't freak out a bit when your heart rates goes from normal (50's) then drops in the 30's in seconds, only to be followed by a a sharp rise to 160's within a minute. I thought for sure I was going to die. The symptoms of POTS are scary and bazaar! It also doesn't help to have an illness that is rare. Most doctors don't know how to treat it, and it can be frustrating to hear your doctor say he doesn't have a clue as to how to treat you. The thing that has saved me is the awesome group of fellow POTSies who have shared their experiences and helped me to realize that what my body was doing is "normal" for POTS.

My new "normal" I now wear like an old favorite sweater. After experiencing freaky heart rates and blood pressure on a regular basis and the deluge of regular POTS symptoms, I no longer freak out. I always remind myself it could be much worse; feeding tubes, catheters and being bed ridden. Knowing how bad it could be truly makes me appreciate living in the now.

H A P P Y B I R T H D A Y P O T S ! ! !
3 years old and waiting for a cure.

Inspired,
Michele

Matthew 6:34
"So don't be anxious about tomorrow, God will take care of your tomorrow too. Live one day at a time."

Another One Bites the Dust!

2011-04-18T10:31:00.000-07:00

Bowm...bowm....bowm.... Another one bites the dust! Another favorite past time has bit the dust, and another ones gone and another ones gone and another one bites the dust! I'm so glad there's music to soften the blow. The barbecue is now off limits to this temper"mental" POTSy body of mine.

The weather was perfect yesterday (low 70's). Most of my family was home, so I decided it was a perfect time to light up the barbecue and cook up some mouth watering steaks and buttery roasted potatoes. As I was flipping the steaks and cooking up potatoes the smell of the smoke just shut down my lungs and sent my body instantly into a POTSy crash. I haven't crashed in a while, so it took me by surprise. I should have foreseen this coming this winter when I would step outside while neighbors had their fireplaces burning. My lungs would go into instant shut down and I'd have to hurry into the house. These things always seem to catch me off guard. Last year I didn't have a problem with the barbecue, so why this year?

I've been Little Miss BBQ chef since I was 10 years old. I love hovering over food on the grill until it's cooked to perfection. Swatting at onlookers to step away from grill so that I can do my barbecue magic. Followed by accolades from friends and family of my mad barbecue skills!

I guess it's time to pass my beloved barbecue tools and blessing to the next generation barbecue chef, my son Sean. Sean, may you never burn a single meal, may your meat be cooked to perfection, and may your food be cooked with perfect grill lines.

Inspired,
Michele

Exodus 29:41
And the other lamb you shall offer at twilight, and shall offer with it the same grain offering as the morning and the same libation, for a soothing aroma, and offering by fire to the Lord.
I always wonder if God loves a good barbecue? I'm looking forward to cooking up a great barbecue feast when I'm in heaven!

Super Teacher vs. Super Wimp!

2011-04-02T16:15:00.000-07:00

I often believe that there are two separate people living inside this POTSy body of mine. They seem as opposite as night and day. The super teacher whose strong and making a difference in the world. I can comfort a weeping five year old in her arms one moment then sing the peanut butter song with hand motions and dancing the next. Then there's the super wimp who can't walk up a set of stairs at church without being dizzy and out of breath by the time I get to the top. My classroom life and my home life are so different that I'm always aware of the contrast. Yesterday I had a 20 minute chunk of time that seemed super human or super teacher. As I recall each incident I shake my head in disbelief that I was the one who did all those things. Here's a play by play of that chunk of time;

10:38
Finished a K-W-L chart on oceans with the class.
Made out a nurses pass for a sick student.
Refill the baby wipe container.
Corrected six papers with students.
Helped a student figure out how to get an answer to a math problem.
Tied a shoe.
Stop two running students and mark their behavior charts.
Checked the bathroom for urine on the floor after a student complaint.
Called custodian for a clean up of urine on bathroom floor.
Wash the eyes and hands of student who got bubbles in his eyes.
Comforted a crying student.
Settled an argument between two students over crayon stealing.
Picked up some trash and a backpack from the floor (which is a never ending job).
Quieted the class twice with a clapping chant.
Directed several students to get back to their seats and get to work.
Unhooked a child's earring that got stuck on the earphones to the listening center.
Corrected seven more papers.
Called clean up and gave positive complements to those following the rules.
Excused the class for lunch.
11:00

Now compare this with this mornings trip to the mall.

9:50
Park in front of Target.
Walk into the store and pick up four items (including my happy chicken free range eggs) all on the first floor of the store.
Wait in a line of only two people to pay for my items.
Walk back to my car.
Drive to a handicapped parking place in front of Macy's because I'm already pooped.
Walk straight to the make-up department on the first floor.
Purchase my foundation for my pasty white face.
Walk back to my car.
When I get outside the store I'm ready to curl up on a bench, I'm so tired.
10:17

My classroom time described above is a little over twenty minutes, but I had been working in my classroom since 7:20 that morning.

By the time I get to the staff parking lot at the end of the day I feel like I've been hit by a bus full of kindergartners. I'm too tired to have a social life outside of my classroom. I know the reason I'm able to work is because God has a purpose for me there. Every day I pray that I can somehow live out that purpose. Being human I often fall short. There are days when the stresses of the classroom make me wish for Friday to come so I can rest on the weekend. I'm not sure why I do that, I'm most "normal" when I'm at work. I feel like I'm almost living up to my potential at work. Why wish that time away?

Super Wimpy Michele

Philippians 3:13-14
Brethren, I do not regard myself as having laid hold of it yet; but one thing I do: forgetting what lies behind and reaching forward to what lies ahead. I press on toward the goal for the prize of the upward call of God in Christ Jesus.

POTS on the Prairie

2011-03-27T13:12:00.000-07:00

I visited the eye doctor on Friday and the good news is I have healthy eyes. The yucky news is that my vision issues are caused by my lack of oxygen from POTS, and there's really nothing that can be done about it. I've been trying to come up with some positive solutions to my recent struggle with my vision. Simple solutions like frequent changes in the kinds of things I do, such as computer time, TV time, reading and plain old fashion busy work. But there have also been some high tech answers as well. My e-reader has a font size option so I can make the words a bit easier to read (though the problem seems to be with time reading and not the size of font). I can even download audio books on my new high tech phone!

Thinking about these new high tech answers to my problems made me realize how good it is to have been diagnosed with POTS in 2008. There are medicines that help enormously, there are watches and phones to help monitor my heart, I have a computer to learn more about my condition and then there's Facebook to bring me together with other POTSies and remind me I'm not alone dealing with this. I can only imagine what it must have been like to get POTS 200 years ago. My imagination takes me to a southern plantation. I'm laying on a fainting couch fanning myself complaining of having the vapors as all my friends and family watch in dismay. But I figure with my luck I'd end up on a prairie in the middle of nowhere too sick to milk the cow or feed the chickens. I couldn't wash the clothes with a wash board in the creek and I definitely couldn't pluck a chicken if my life depended on it. I would be lucky to see a doctor and there wouldn't be treatment options. The chances of survival would probably be slim.

The diagnosis for dysautonomia has only been around for about 20 years. Dysautonomia is still a mystery to doctors around the world, but there's allot of research being done. I often complain of the doctors lack of knowledge, the lack of treatment and the feeling of being a guinea pig for this disease. Well the truth is treating dysautonomia is not perfected yet and I AM a guinea pig. My prayer is that being a guinea pig is going to make things better for my children and their children (since there has been a link to this being genetic). Having POTS blows big time chunks, but I'd rather have it now than 200 years ago. My life with this POTSy body here on earth is a teeny tiny fraction of eternity with a new body that Christ has promised me. I need to learn to live with this challenge and try to see what God wants me to do with the life He has given me.

Inspired,
Michele

Revelations 21:4-5
4 and He shall wipe away every tear from their eyes; and there shall no longer be any death; there shall no loner be any mourning, or crying, or pain; the first things have passed away." 5 And He who sits on the throne said, "Behold, I am making all things new." And He said, "Write, for these words are faithful and true."

What to Blame?

2011-03-22T17:20:00.000-07:00

I'm writing this unable to read what I'm writing or really able to check my errors. So please excuse any flubs I may miss on this page. My reading vision this week has become quite blurry, I can only read for very short periods of time, and my eyes and head hurt when I try to focus on anything longer than a sentence. I have tried my reading glasses, but there is no improvement. This new development is cramping my life style. I love to read and really enjoy writing my blog.

Trying to pinpoint the cause of this new symptom in my health has become difficult. Is this a new POTS symptom or just some "normal" health issue. Since I've been diagnosed with POTS almost three years ago ten out of every ten new symptom that has mysteriously popped up has been linked to POTS. It's only natural that when something new comes up my first thought is "oh great another POTS symptom!". And if I'm being completely honest with myself this new symptom seems to feel connected with feeling like I'm constantly lacking oxygen. I'm always feeling dizzy and tingly on my lips, nose, scalp and tongue.

Struggling with reading is very irritating! I am an avid reader, I prefer reading over TV. I'm not able to enjoy my favorite past time either, chatting with my friends on Facebook. Reading more than a few status post gives me a headache and I feel extremely guilty not responding to my friends. I can hear the shouts of "bad friend" in my head, but true friends will understand. I am really thankful that I teach kindergarten since all the print is super-de-duper large, it hasn't really taken an effect on my teaching ability.

I so have a tendency to ignore many of my symptoms. I've learned to just accept them and move on, but my vision and ability to read is something I refuse to ignore. I'm hoping I'm wrong about it being a POTS symptom and my vision issues are just a sign of my "normal" aging. Maybe the real Gurtie is looking my way and I'm really getting old (God forbid!). I'll find out for sure on Friday during my appointment with my optometrist.

Maybe just Gurtie,

Droids and Apps

2011-03-12T06:15:00.000-08:00

Last week my wireless phone mysteriously disappeared. After making a painstakingly thorough search of my classroom I can only conclude that my phone was abducted by aliens! I spent several days hoping that maybe one of my kindergartners would return it or maybe the aliens would beam me down a newer improved phone, but neither was the case. I purchased this phone nearly three years ago so that I could use the amazing new technological ability to view my e-mail from my phone! I loved my phone and I'm not one who needs the latest in technology. I would have kept my phone for another 3 years if it didn't mysteriously disappear.

So after being phone less for several days, I finally decide I need to get a new phone. Now I need to make a decision. Do I make the smart financial choice of getting a phone similar to what I have or be financially irresponsible and get one that has the latest technology for the month (because we all know that that there will be something better out there next month). So I make the irresponsible choice and decide on the newest most advanced model for the month. Now to decide on a phone. I usually spend hours if not days researching the pros and cons of any large financial purchase, but this middle aged technologically challenged woman would probable need to purchase and read "Technology for Dummy's" before I could decipher the terminology in the phone reviews. So I decided to contact an expert, my 24 year old son.

I call my son and ask him for his recommendation. He begins by asking me what I need in a phone. I tell him it needs to have a keyboard. The line is silent and then he tells me they all have keyboards what kind do I want? Now my end of the line is silent. So my son realizes that I'm clueless and gives me some options. He asks, "What else do you want?" I answer, "I heard from a POTSy friend that there's a phone that has a heart monitor." My son begins rattling off names, Droid 2, Droid X, Galaxy S and iphone 4. Being a Star Trek fan I zero in on the Droid because it sounds like a Borg, and who doesn't want a Borg in your purse, that's what I'd like to know! My son continues to list the many pros and cons to each phone and tells me to call him at the store if I have any questions.

As I'm driving to the store I begin to fantasize about how wonderful it will be to have my very own Droid. Aren't droids kind of like robots that do everything for you? Maybe this disappearing phone thing is a blessing in disguise! So I walk into the store with my list of phones and I am approached by "happy salesman". He asks me if I need help and I hand him my list and he now appears to be "very happy salesman". "Very happy salesman" begins rattling off features and I give him the deer in the headlights look. He decides to change his approach and asks me "what are you looking for in a phone?" I tell him "a keyboard that's sensitive to numb fingers that also has a heart rate monitor." Now he has the deer in the headlights look and tells me he'll be right back. When "happy salesman" returns he directs me to the Droid and he begins playing with it. He smiles and says "cool, I found the heart rate app", and he shows me how it works and I'm sold. "Very happy salesman" rings up my purchase and hands me a piece of paper with a list of a half dozen cool apps that are his favorite and then wishes me a great evening. As I walk out the door with my new handy dandy Droid, I'm thinking "Stupid, stupid, stupid, you really can't afford this phone!" But I walk out the door anyway.

My son gets home and immediately begins playing with my new phone, rattling quick directions on how to use it. We check out the new heart rate app, he adds himself and his sister to my contacts and leaves me alone with the phone. Having no idea what he just showed me, I toss the phone in my purse and forget about it till the next evening when my son asks "Are you having fun with your new phone?" I tell him "I haven't looked at it since yesterday." and he shakes his head in disappointment and walks away. I'm sure if I put in a tenth of the energy I put into my classroom I would have this new phone and all its apps down. Who knows I might even find some apps that would actually make my life easier. Or maybe I should read the manual that came with the phone, I'd probably learn a thing or two, but does anyone really read those things?

So I have this cool new phone that has hundreds of apps that I don't know how to use. I can't call anyone because I lost all my contacts in my old phone because who uses a phone book anymore? Even if I did have a phone book, I wouldn't know how to input them anyway. On the positive side I do know how to use the heart rate monitor which is way cooler than my ugly watch!

I'm sure my old phone will reappear at the end of the school year. I'll probably find it in someones desk stuck to the bottom next to an open bottle of white glue and a rotten peanut butter sandwich.

Technologically challenged (I'm sure there's an app for that),
Michele

Proverbs 1:7
The fear of the Lord is the beginning of knowledge:
Fools despise wisdom and instruction.

Ode to Compression Stockings II Energy zappers

2011-03-09T17:38:00.000-08:00

I had another bazaar compression stocking morning. Getting those things on cracks me up and then my laughing just zaps more energy. I've been wearing the knee high stockings daily and have gotten the hang of putting those things on with very little effort. Yesterday morning I decided to wear a dress, so waist high stockings were a must.

So I've done all needed preparation for getting on these insanely difficult stockings. They're inside out as my sales lady instructed. I'm in the center of my bed to buffer any falling over. I've had my breakfast and my coffee to provide much needed energy. I've laid them out flat and straight, stocking toes facing my toes so that they don't get twisted up while putting them on. And finally I've done very little energy zapping activities in the last thirty minutes to ensure that I'm completely energized for this what looks like simple task.

So I've squeezed my rather slender legs in what feels like the casing of an Oscar Mayer Wiener. While doing so I've experienced the typical fall overs during the struggle. I'm also giggling to the point of tears and I'm exhausted. I definitely used up all my spoons on this simple act. I think next time I plan on putting these stockings on I'll make sure that I'm supplied with some extra energy. Maybe I can use my phone charger and suck on the end of the power cord or maybe an IV infused with a Monster drink would do the trick. There's got to be a better way of doing this. And before you inform me of the wonderful handy dandy gadgets out there for putting on my energy zapping hose, I know, I know they're out there. I'm just technically challenged. I still don't know how to use my tv remote or the space saving storage bags that attach to my vacuum cleaner. So I'm not adding one more divice that will get stuffed in my cupboard collecting dust.

Who would have ever thought putting on hose could make me laugh so hard (though it could be hysteria). Thanks POTS for another laugh!

Inspired to laugh,
Michele

Ecclesiastes 3:1-4
1 There is an appointed time for everything. And there is a time for every event under heaven.-
2 A time to give birth, and a time to die;
A time to plant, and a time to uproot what is planted.
3 A time to kill, and a time to heal;
A time to tear down and a time to build up.
4 A time to weep and a time to laugh;
A time to mourn, and a time to dance.

I like to try to keep my time equally balanced.
Though I do hope the whole killing thing is about killing bugs and animals for food. Because if not, I have not found a time for that yet!

Magic Eight Ball

2011-03-05T11:46:00.000-08:00

Last night I decided to step out into the wild side a bit and take a chance at an evening out with friends and colleagues. One of my favorite teacher friends was having a jewelry party and I was craving for some form of a "normal" social life. She was kind enough to find some understanding colleagues to give me a ride to her house, and I couldn't wait to actually be doing something "normal" for a change. As the night drew closer, I was beginning to listen to those shouts of doubt that were screaming in the back of my head "What if your body can't handle it?" and "Please don't let me crash in front of these people." I decided to ignore those pesty voices in my head not worry about what might or could happen.

On the night of the party my body seemed to be pretty cooperative, but my brain was on brain fog mode. I couldn't seem to compose a single sentence without a pause... or an "um" or "uh" in the middle. I seemed to be a little more self conscious of my inability to make intellectual conversation with these ladies from the world of academia. I know that these ladies don't have a mean bone in their bodies, but my past experience with a mean judgemental teacher I worked with several years ago always seems to creep into the shadows of my thoughts. As I was sitting there becoming more frustrated with myself I began to wish for a remedy to my problem. Poof, I discover the solution! I need to switch out my brain with a Magic 8 Ball. If someone asks me a question I could just tilt my head to the side and the little triangle answer would pop up on a glass panel on my forehead. Here's how a conversation might go.

Jane: "Michele, do you think the union protests in Wisconsin will be successful?"
Michele: Head tilt "As I see it yes."
Jane: "Do you think our district will be sending out allot of pink slips this month?"
Michele: Head tilt "Outlook not so good."
Jane: "Are you expecting to get a pink slip?"
Michele: "My sources say no."

Conversations would be a whole lot easier with a Magic 8 Ball in my head. Even with my many brain fog moments, I had a great time! Nothing like great friends, great food and some really beautiful jewelry to fill an evening. It was nice to get out and have a "normal" evening out. I'll have to do it again real soon,

"Outlook good!",
Michele

James 1:19
This you know, my beloved brethren. But let every one be quick to hear, slow to speak and slow to anger.

Rose Colored Glasses

2011-02-14T15:13:00.000-08:00

My former husband use to tell me I needed to take off my rose colored glasses and take a good look at the real world I'm living in. I'm thankful at the time that I liked how I saw the world and that he only saw the world in black and gray. I realized I wasn't the one with the problem and the sad thing is that his negativity was the real issue. Now don't get me wrong I am not stumbling through life pretending things are not the way they are! Believe me when I say that I've felt the pain life has dished out for me. I just choose not to relish in it too long. Rose is such a joyful color, why not paint my world with joy instead of darkness.

Growing up I had a difficult childhood. But when the pain of living in a dark scary world was getting me down, I always looked for the beauty in the world around me to bring joy in my life. It didn't take much; an Autumn leaf, a bird perched on a tree or my favorite iris bush that seemed to bloom all year around just for me on my way to school. I am so glad I picked up this coping skill at such an early age because it has definitely made a difference in how I deal with dysautonomia.

They say laughter is the best medicine, I'm convinced it's true in my case. I wake up in the morning giggling at the decision I need to make first thing as I sit up in bed. Do I drink the 16 oz glass of water my parched body requires to start my day or run to the restroom before I have an accident. The giggling usually doesn't help the situation. After I drink the ginormous glass of water, I make a run to the toilet only to find myself running into walls because of the lack of blood to my head. So I sing to myself "What do you do with a drunken sailor". I begin to giggle and almost lose it at the door. I head for the kitchen to make breakfast that I force myself to eat. The nausea is overwhelming every morning, but I have a song for that too, "It's not easy being green!" with a visual of Kermit the frog singing to me. I have to admit that the extreme fatigue and body aches are a bit more of a challenge to laugh at or see a positive side to, but I do imagine I must look quite odd constantly moving around and shaking my limbs to keep my blood flowing to my extremities. Sometimes I imagine myself looking like Lerch form the Adam's Family with my arms bent at the elbows and my hands in the air. I often think I'm in an "I Love Lucy" episode as I try putting on my compression stockings and fall over every time. My hands and feet are a rainbow of color and pattern and I do still marvel at their uniqueness. And if all else fails I can still look out my window because there's always something amazing to see out there to cheer me up.

I'm not saying I'm always laughing and cheerful, I have those days that are harder than others. I just choose to be a glass half full kind of girl. The world is a much nicer place when everything around you is pink!

Inspired,
Michele

Romans 15:13
Now may the God of hope fill you with all joy and peace in believing that you may abound in hope by the power of the Holy Spirit.

Ode to Compression Stockings

2011-01-28T09:19:00.000-08:00

Oh how I love thee compression stockings.
I compare thy hug to a size 8 woman trying to squeeze into a size 2 jean.
Your tight embrace compels my feet to do an Irish jig,
and your firm squeeze sends a burst of energy that gets me through my day!
I will loveth thee all the days of my life!

I was told over a year ago to purchase compression stockings to help with my pooling and circulation issues. The first time the doctor mentioned it to me waves of horror sent shivers down my spine with the thought of wearing something so ugly and lacking of style. By the second visit and second recommendation to purchase the stockings I thought I should be a good patient and give them a try. I went on line to check them out and my jaw hit the floor at the price of one pair of stockings. I could buy a cute pair of fine Italian leather shoes for the price of one pair of UGLY stockings! I'm NOT going to spend that much money on a pair of socks! So being the cheapskate that I am I went to my local drugstore and bought a pair of cheap ones that cost less than $10.00, and headed for my favorite shoe salesman at Nordtroms for a nice pair of peep toed flats. I put on the cheap compression stockings and I couldn't tell the difference between them and my normal socks except for the fact that the compression stockings cut off my circulation below the knees.

One year later and I'm with a new neuro and he also recommends the compression stockings. I cheerfully tell him they don't work and we move on to other more important issues. Three months later and the dreaded subject of compression stockings is brought up again! I'm beginning to wonder if maybe there might actually be something to these compression stockings and sheepishly bring up the fact that the stockings I tried were very cheap. I told the doctor that compression stockings are very expensive and if he might write me a prescription for them, and he agrees! I'm still not completely sold on the stockings idea and hold on to the prescription. A week later my legs are in more pain than I've ever experienced. The pain and discomfort is so bad that I'm beginning to wonder if I can continue to work with this much pain. I finally decide the compression stockings may be my last option. My former husband may have been right about one thing, I am a stubborn German!

With prescription in hand I head to my local medical supply store and hand them my prescription. I'm told to have a seat and someone would be with me shortly for a fitting. A FITTING! I look at the guy and say "Excuse me, I'm just here for compression stockings, not crutches or anything like that!" He smiles and says I need to be fitted which is normal procedure for compression stockings." I sit down and wait, and within minutes a lady with a tape measure begins measuring various parts of my legs. She hands me one pair of thigh high stockings in my desired color, and she asks me if I know how to put on compression stockings? I give her a "are you kidding me look" and she takes that as a "no" and begins giving me a "lesson" on putting on compression stockings. In my head I'm thinking sock are socks, I should be able to handle it. But I have nothing better to do with my time so I actually take note of the key points to her lesson. I'm thinking one pair of stockings are not going to get me through a week of working. I mention my concern and she directs me to the calf high section and I chose a pair of navy socks to wear with my jeans. I'm thinking the insurance company will pay for the thigh high and I'll pay for the other pair. We head for the cash register and she announce the total, almost a hundred dollars! I mention the prescription and she explains that the insurance companies will not pay for compression stockings because they are considered cosmetic. I explain that I have orthostatic intolerance and that it's definitely not for cosmetic reasons. She says sorry but they have NEVER been covered by the insurance companies. I'm thinking "seriously, who would want to purchase a pair of these ugly things for appearances sake!". I end up charging them and head out the door.

The next morning I take my lovely knee highs out of the box. I attempt to put them on and soon find that the traditional way is not going to work. It's 6 am and my brain is still on defog mode. What did the lady say to do....tick.....tick.....tick, hmmm, something about turning them inside out, not sure why. I turn them inside out and can't get them over my toes and up my foot. I keep trying and end up falling over backwards. As I lay there I'm thankful I attempted this on the bed. But now I've got to get myself up which is never an easy task for me. I'm back in my sitting position and make another attempt to get these "special" socks on. After 5 minutes I get the first sock on, woohoo! Now I'm tired and I still have one more sock to put on. As I hold up my second sock my arms are shaking but the experience with the first sock makes it a bit easier to get the second one on. As I sat there on my bed recouping from putting on my stockings I'm thinking the time and energy spent putting on these stockings are probably not going to be worth any results I may get from these things and that I probably just waisted a chunk of money.

I'm in the parking lot at work and the walk to my classroom is probably the most difficult walk of the day, so off I head for my classroom. I notice the difference immediately. I feel like I have more of a spring to my step, hmmm this is good. I get through my first hour of teaching and I feel pretty good as far as my legs are concerned. By the end of the day I'm feeling not an ounce of pain or fatigue that usually plague me at that time and I'm ecstatic! I head for the parking lot and notice I still have a glint of the spring in my step from earlier in the morning and I'm smiling from ear to ear.

I get home and go on line and order four more pair of stockings and find out that there's quite a discount on line and in larger quantity purchases. I love these things so much that I begin to envision how I'm going to incorporate my stockings into my summer wardrobe. Maybe I could begin a fashion trend of wearing compression stockings with shorts and skirts! The next days unseasonably warm weather put a quick halt to wearing compression stockings in the heat. My feet felt like they were doing hard labor in a sweat shop in those things.

If you've been putting off purchasing compression stockings for vanity reasons or costs. I will tell you that they are worth more than all my designer shoes in my closet. I'm kind of like that guy in the DR Seuss book Green Eggs and Ham I will not eat green eggs and Ham, I will not try them Sam I am or in my case I will not try compression stockings, I will not wear them doc I am! After my first day,
I will wear them on a train and on a boat and in the rain!
I will wear them in a tree, they are so go, so good you see!
I will wear them here and there, I will wear them anywhere!

Inspired,
Michele

Proverbs 1:5 A wise man will hear and increase in learning. And a man of understanding will acquire wise counsel.

Out of Body Experience

2011-01-23T13:37:00.000-08:00

Today I so wanted to have an "out of body" experience! For the first time I really wanted to be out of my body and into a body that isn't so messed up. I've been frustrated before, but never fed up.

Today at church my body was acting out like one of my 5 year olds screaming "I DON'T WANT TO SIT IN CHURCH!". And there was nothing I could do to satisfy it's sick need to make me as miserable as possible. It was a battle of wills, POTS (stamping and kicking) against Michele (trying to talk reason with it). POTS wanted me to be in pain and miserable, and I wanted to do everything I could to relieve my body of the symptoms I was facing.

My body seemed to be having more trouble with circulation than usual. While sitting my blood was pooling at my feet and buttocks(the word "pooling" seems to bring on visions of a swimming pool filled with blood, ewww), and not getting blood flow to my hands and head. The pooling made me ache in my hips and legs, and the lack of blood flow was causing my lips, tongue and nose to tingle and get numb. The pain would become so bad that it made me nauseous. The sermon was really good and my body had become a distraction. To remedy this I kept changing positions; crossing my legs, putting my feet up on the pew, shaking my feet and hands out, and moving around like I had ants in my pants. I'm sure I was a bit distracting to anyone behind me that is plagued with ADD. I'm sure I looked like one of my kinders rolling around on the rug. I finally had had enough and went out to the vestibule (the back of the church before you go into the main part of the church). I took a salt tablet and sat out the sermon next to the drinking fountain deemed necessary because the salt tablet leaves me feeling as parched as the Sahara desert. The ushers kept eyeing me compassionately waiting for something to happen since I've been on the prayer chain more often than I'd care to be. I went back into the main church when the music started up. While I was singing my body went through cycles of feeling fine to fatigue, then numbness and pain which would make me nauseated. I would stop singing, shake my limbs and go through the cycles all over again. I finally get why boxers are always shaking themselves out during their breaks, it's to shake up the blood into those parts of the body that have been hurt by their opponent. I can hear the Rocky anthem playing in the background of my head as I replace myself with the buff Sylvester Stallone (not quite as attractive vision). While all this was happening I kept telling myself this is the body God gave me, I need to stop complaining and accept and rejoice in what I have. Finally the POTS took over and I became so frustrated I shook my whole body out and wanted to growl out loud in the middle of church. "I've had enough of this stupid body God, take it I'm fed up with it! I want a new and improved one please." Is this what God means to suffer in Christ? I don't think so, I'm sure God wasn't too pleased with the fact that I hardly heard a word His servant our pastor was saying.

So many things about church are such a challenge for me, sitting still for over an hour, standing in one place to sing hymns and praise music, singing and running out of air and those dreaded stairs to get to the group I help lead. Do I just let POTS win and give up and stay home? On the other hand church is a place of "us", a place to worship together, unite in prayer and share our burdens so we don't ever have to walk in our pain and our joys alone. My faith in Christ and being close to other believers renews my hope that I'm not going through this alone and that there IS a purpose in this suffering. God does and has revealed His purpose in this many times, but some times His purpose is harder to see when I'm in the middle of the pain. Today I made up those stairs with less trouble than I expected. I'm sure there was someone praying for me when I wasn't able to do it myself. Hence the reason I continue to push through this every week.

Inspired,
Michele

Ecclesiastes 4:9-12
Two are better than one because they have a good return for their labor. For if either of them falls, the one will lift up his companion. But woe to the one who falls when there is not another to lift him up. Furthermore, if two lie down together they keep warm, but how can one be warm alone. And if one can overpower him who is alone, two can resist him. A cord of three strands is not quickly torn apart.

0 to 70 in Less Than 60 Seconds

2011-01-16T10:01:00.000-08:00

Imagine walking into a local cafe, you order your meal and sit at a table waiting for the server to bring you your lunch. As your waiting you overhear a conversation of two woman at the next table.

Gurtie: "Agnes, how are you feeling today?"

Agnes: "Oh Gurtie, just getting out of bed is a chore."

Gurtie: "I know what you mean. When I finally get enough energy to pull myself out of bed, I have to use the wall to balance myself to keep from falling."

Agnes: "That's awful Gurtie, I have the same problem every morning, my dogs
actually make a run for it when I head down the hall."

Gurtie: "It's so frustrating, I tried to take a shower without my shower chair today and almost passed out! I can't even take a shower without a shower chair!"

Agnes: "I'm so glad I don't need one of those yet, though bathing is still a huge challenge, my biggest fear is someone finding me passed out in my birthday suit on the shower floor."

Gurtie: "So, what did you order for lunch?"

Agnes: "Not much, just soup. Never sure what my stomach can handle. Nausea every day gets old Gurtie."

Gurtie:" I hear ya, I've always boasted of having a stomach like a steel trap, now I'm gluten free, lactose intolerant and veggies send my system to a tail spin."

Agnes: "How'd that shopping trip go with your daughter last week, I know you were a bit worried about it?"

Gurtie: "Took the wheelchair, didn't run into too many people. But it is hard not to always be able to get at what you want. It was nice to go shopping
without getting too pooped out!"

Agnes: "Yeah the last shopping trip I made took days to recover."

Gurtie: "How are the migraines, any relief?"

Agnes: "A bit better since the doctor prescribed um.....um....."

Gurtie: "So frustrating when you can't remember the next word, happens to me all the time."

Agnes: Yawn...."Getting tired, should head for home and take a nap."

Gurtie: "Yup, pretty tired myself a nap sounds great!"

Both ladies get up, one grabs the table to steady herself and they both head slowly out the door.

You might be thinking that this conversation is coming from a couple sweet retired ladies struggling with the plagues of old age. But this could easily come from a pair of ladies suffering with dysautonomia. Switch the names to Amy, Ashley, Bethani, Carol, Cathy, Cyndi, Donna, Geney, Kristen, Lyla, Marilyn, Michele, Miranda, Stacy, Tracy or Vi. Instead of the pains of a 70 year old, it could be the pains of twenty, thirty, forty or fifty year old. Way too early for these kinds of problems.

Dysautonomia makes me feel like I'm seventy. When I was younger I promised myself "when I get old I'm never going to be one of "those people" who sit around complaining about their ailments". I'm realizing that when you wake up feeling awful 24/7 and feeling bad plagues every minute of the day, sometimes you just can't get away from it. Feeling ill in the foreground of your thoughts sometimes makes you speak of your illness more than you'd like too. It takes a quite bit to not complain. I'm getting better at giving the pat answer of "I'm fine" to those who are just going through the motions of social etiquette, and being honest with those who really care and want to know.

Feeling like Gurtie with Michele on the inside.

2 Cor. 12:10
Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ's sake; for when I am weak, then I am strong.

Totally Dysed

2011-01-11T16:30:00.000-08:00

It's my blog and I can cry if I want to. It's nice to have a written record of the ups and downs I've experienced on my journey with POTS. Today was definitely a down day. I had my 2nd doctors visit with my new neurologist today. I guess they roll out the welcome mat on the first visit and treat you totally like poo for all the rest.

So I'm waiting in the examination room on the short little table with the thin paper draped across it, when the doctor opens the door and says "Happy New Year, how are you today?" It's a typical greeting when two people first see each other, so I respond "Happy New Year, I'm fine and you?", then he responds, "Good to hear your doing well with the medication increase, how are things going with side effect "A" and "B"?" The doctor is still standing at the door that is wide open and I'm sitting about 4-5 feet away from him on the examination table. I'm mortified that he has just shared something I consider personal and confidential to anyone that might be close enough to hear. At the same time I'm thinking that I didn't mean I'm feeling healthy fine, I was just responding to a simple greeting. I answered his question about the medication side effects, he then does the typical eye-hand coordination exam, eye following finger and little flashlight thing and listens to my heart. He heads for the door and asks about how the compression stockings worked, I tell him not so good, then he says I'll see you in about 4 months. His body language is telling me he's in a hurry and has no time to answer a long list of my questions. So I narrow my list to just two. I inform the doctor that I would like to ask a few questions. He remains at the door that is still open and waits for my questions. Again the body language is telling me to hurry up. I ask him about the neuropathy I'm experiencing and are there any long term dangers like there are with diabetes? He tells me there's nothing to be concerned about and begins to head out the door! I jump off of the table and follow him out. I say "I have another question, I'm having some trouble dispensing my medication." I pull out my bottle and explain my issue in the hallway in a hurry, he then changed my prescription to alleviate my dispensing issue and headed quickly down the hall. It almost felt like he was running away from me. He couldn't have spent more than 3 minutes with me and he was running on schedule. I was so upset my POTS symptoms set in and I had to hold myself up to make my next appointment.

I'll deal with this tomorrow when I've cooled down a bit, just needed a place to vent.

Dysed by my Doc,
Michele

Happy New Year

2010-12-31T11:08:00.000-08:00

As I reflect on 2011 I realize it's been a year of acceptance and appreciation for what I have. I have learned how to live with this new normal and view this new often purple, light headed, fatigued, tired and unfamiliar body with humor and patience. I'm settling into this new life style that is so foreign to my nature. I've learned to appreciate what I can do, because there are so many out there who have it so much worse. I've learned to educate myself on my illness and not be afraid to question my doctors. I've made so many new friends because of POTS that I would have never met. The support and sharing through the many POTS groups has given me the constant reminder that I'm not alone in this. POTS has changed who I am. My body may be physically worse off than the year before. But the person I'm becoming is definitely richer and better than the person I was before I got sick.

My hopes for next year are:
*A cure for POTS.
*A closer bond with friends and family.
*The willingness to trust God with the direction He chooses to make in my life.
*A miracle of healing would be nice.

Wishing all of you the best new year ever.

Inspired,
Michele

Romans 8:18
For I consider the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us.

Pajama Day

2010-12-27T16:05:00.000-08:00

I promised myself that this winter break I would keep my social calender empty with a few minor exceptions of family events on the holidays. My two weeks would include pajama days filled with rest and relaxation.

I started things off with a day spent in my favorite blue snowflake thermal pajamas with a book I haven't read yet from my e-reader. I could feel the fatigue melting off my exhausted body with every page I turned (or clicked). A pajama day to be proud of.

On my second pajama day only my most comfy red flannels and softy snowman socks (try saying that 3 times in a row) would do! I decided I would treat myself to a marathon of The Nutcracker. The artistic direction most of these ballet's took inspired me to do a great deal of shouting at the TV like an angry football fan. I mean, who in their right mind would switch the sugar plum fairy solo with a duet with a sheep? There comes a point where artistic expression crosses over into rubbish! It was somewhere during the party scene that I began finding the commercials more entertaining than the ballet!

These commercials made my top 10 most memorable.

1. What is cable television without a Snuggies commercial. Gee, it comes in every shade of the rainbow, including animal print, camo (in case you need to hide from your loved ones) and Spongebob Square pants for the kids. Who doesn't need a poly-me-ester oversize blanket with sleeves. In my book, if it doesn't fit, don't wear it! I guess I can cross that one of my impulsive buyers shopping list!

2. RLS (Restless Leg Syndrome) medication, within 20 seconds of listening to this commercial 90% of it's viewers have diagnosed themselves with this condition and are running to their phones to call the 800 number to get their free drug sample. Unfortunately while they're out of the room dialing, the announcer has spent 2 minutes on the long list of side effects this drug may cause.

3. Acutane lawsuit commercial. If you or a loved one has taken Acutane and has suffered one of the following conditions please call ****** law firm now at the 800 number below. Obviously this commercial came on quite a bit, and if my teaching job disappears I may consider doing commercials. I wouldn't be too surprised if the same law firm isn't representing patients who ended up taking the above RLS drug in a few years.

4. The upside down hanging tomato plant. Really? What's wrong with using a nice pot and growing tomatoes in the traditional way?

5.The 16 individual brownie pan. A definite impulsive shoppers must have, because it would look lovely collecting dust next to the Foreman Grill, Juicer and The Chopper!

6. The Cami Secret, just clip this onto your bra straps and instant cami! Woohoo, so how hard is it to actually wear a camisole? This so reminds me of the dickeys of the 70's, but at least the dickey replaced a long sleeve shirt, and the dickey didn't last very long so I'm sure Cami Secret isn't too far behind it.

7. Fat melting pills, just take the pill twice a day, and watch the fat melt off your body. I'm sure this commercial is popular with those who don't want to work a little for their weight loss!

8. Stretch mark removal cream, which follows the fat melting pill commercial. You will need this product after all the fat melts away and leaves your body with rubbery stretch marks. But you need to hurry for this one, the first 2 callers receive a free .25 sample, but don't fret the next 1 million callers who purchase our product will get one free! But wait, if you call within the next 5 minutes you'll also receive this travelers size bottle, just pay separate shipping and handling.

9. The shake weight, this commercial had me blushing within the first two seconds. The Shake weight is designed to tone woman's arms, but I'm sorry to me it looks like something hmmm... how to word this, I can't so you'll have to check out this commercial yourself, just check their web site @ https://www.getshakeweight.com

10. So far my all time favorite commercial is the Schick Quatro Woman's bikini trimmer. This is a "they didn't" commercial. It starts off with three woman in short skirts and heels pushing pink lawn mowers singing about trimming below the belt. They pass different shaped shrubs singing the praises of the many shape options you have (oval, circle triangle and narrow rectangle). I kept telling myself they surely can't be showing this on TV, yet I couldn't stop watching giggling hysterically.
If you haven't seen it it's definitely a must see, it can be seen on u-tube titled "mow the lawn".

So unfortunately that's how I've been spending my first week of winter break, hopefully the second is much more exciting.

Inspired to spend my days more wisely,
Michele

Proverbs 13:4 The soul of the sluggard craves and gets nothing, but the soul of the diligent is made fat.

Merry Christmas

2010-12-23T08:35:00.000-08:00

I wanted to wish my loyal and precious friends a very merry Christmas.
May you enjoy the precious moments given to you.
May your day be symptom free.
May you bless those who need you.
May you remember the reason for the season.
May God bless each of you and keep you in His arms of protection.

Inspired,
Michele

Luke 2:10-11
And the angel said to them, "do not be afraid; for behold, I bring you good news of great joy which shall be for all people; for today in the city of David there has been born for you a Savior, who is Christ the Lord.

My BFF has a New Friend

2010-12-18T17:28:00.000-08:00

My BFF (Big Fat Foot in case you've missed a blog or two.) has a new friend. Which would be my BFB, Big Fat Belly! I would prefer not to have Big Fat anything, but POTS seems to be a magnet for everything undesirable!

One of my POTS symptoms is constant nausea. It feels like morning sickness all day long without the the sweet prize after nine months. At first I responded as most do, and didn't eat much. The decrease in eating seemed to make my POTS symptoms even worse, and the nausea only increased. It took over a year to discover that eating small meals all day helped my nausea and gave me little boosts of energy as well. Eating has become a triggered response to nausea. I feel a little nauseous I eat.

It doesn't help that the foods my body likes most are a bit high in the fat category! I crave nuts, dairy, breads and pasta. Fruits and veggies sit at the bottom of my stomach like a giant boulder with time a of digestion equalling that of a piece of chewing gum (which is several years according to gum legend).

All this eating has its consequences. Two years ago I was a size 0, two years of my new eating regimen and I'm an overflowing muffin top size 4. Dieting in any way shape or form is out of the question. I struggle with an eating disorder, and trying to diet would only put me on a path of insanity! I was a walking, talking calorie calculator. I couldn't put a single thing in my mouth without doing a mental calorie count. It took me a while to accept eating as a good thing, food has always been like poison to me, what's a girl to do? Exercise is a problem as well. Anything that makes my heart rate go up triggers my POTS symptoms. Yoga positions make me dizzy. I'm not sure what the answer to this problem is, but to be honest my fear of becoming as big as a house are beginning to look like a possibility. The serenity prayer seems to be the one thing I can cling to. God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. This is a small hurdle compared to others I've faced. I'm lucky I can eat, many people with this condition often have serious digestion issues. Maybe that's the answer, eat while I'm still fortunate to be able to do so. There may come time when I won't be able to eat the way I can now, and the extra spare tire around my middle may come in handy.

Inspired Michele muffin

Philippians 4:13
I can do all things through Him who strengthens me.

Christmas Spirit

2010-12-04T10:36:00.000-08:00

This week I didn't need to have a visit from the ghost of Christmas past to realize that the spirit of Ebenezer Scrooge had taken up residence in my body. Or maybe the Grinch, but snippy, grouchy Michele had definitely entered the room when it came time to decorate my home.

Every year I look forward to the first signs of Christmas. The wanna be home decorator begins dreaming of new ways I can transform my home into a Christmas wonderland. I almost cheer when the stores begin playing Christmas music right after Halloween!

This year was no different. I usually begin decorating on Thanksgiving weekend. Since our Christmas decorations are up in the attic I have to wait for my He-man son Sean to get them down. Unfortunately for me, Sean doesn't quite have the same enthusiasm for decorating the house as my daughter and I have. It took a week of hounding before he finally got them down for me.

It's Wednesday night, right in the middle of my work week. I'm tired and fatigued but excited to finally be able to get the decorations up. My daughter and I have always decorated the house together and we both were like two kids in a candy shop. Traditionally we have always played Christmas music, but this year my daughter asked to sway a bit from tradition and play some of her favorite music instead. Wanting to be the hip, cool mom I agreed to her request with a little inner disappointment. After five minutes the music began to grate on me and I regretted not sticking with tradition. I believe that's when the Grinch began to seep into my oxygen deprived brain.

Everything began going down hill from that point on. First, the lights in the tree wouldn't light in two rows of the tree (we have a fake tree because of allergies, yuck). Just trying to hold my arms up to check each individual light and afterward spreading the branches so they look somewhat natural was exhausting. It was at this point that "Ms. snippy" took over my body. Then the light for the manger of the nativity scene wouldn't work so "Ms. Whinny" joined "Ms. Snippy". I'm sure at this point my daughter was thinking it's time to put me in my room for a "time out". Thankfully she was still in her "happy place" joyfully humming away to her music. We finally get the lights to work on the Christmas tree and it's time to wrap the tree with ribbon. I begin to help, but my arms are no longer of any use to either of us, so my daughter points to the couch and tells me to sit. My daughter busily finishes the ribbon and asks for my opinion (what she really wanted was praise for a job well done). "Ms Perfectionist" and "Ms. Impatient" joined the party of attitude crashers, and I begin "fixing" the ribbon, only to have to start over. My joyful assistant Megan leaves the room with a few attitude crashers that I created "Ms. Not Good Enough" and "Ms. Angry". I get the ribbon in place and the pain and fatigue have taken over and I give up on the long anticipated Christmas decorating and head for a bath.

As I'm soaking in my "extreme" bubble bath with the jacuzzi jets on full blast, my conscience begins to take over. I begin to mull over what was the real culprit of the evening. I realize I'm not upset with the lights, nativity scene or the ribbon placement. I'm really angry at my POTS for stealing one more good thing from me. Can't I do anything normal without the reminder that I have POTS! Many questions begin to surface. Did I have this much trouble decorating last year? No. Does this mean I'm getting worse? Maybe. What will things be like in a year from now. Stop, stop, stop! I need to stop worrying about tomorrow and deal with today. I just crushed my precious daughter's spirit, and I need to take responsibility for my actions. It's time to kick out the attitude crashers and eat some humble pie.

I did what I needed to do, apologize to my daughter, praise her for a job well done, and thank her for the amazing help she is to me. Then I fell into bed knowing that I'm blessed to have an amazing, helpful and forgiving daughter.

When I woke up the following morning the house was completely decorated by my awesome daughter. I might have POTS, but I also have two amazing children, a wonderful home that can be decorated, food on my table, friends and family to share the good times and the bad. Just another reminder to remember the good always outweighs the bad.

Inspired,
Michele

Luke 12:28
"But if God so arrays the grass in the field, which is alive today and tomorrow is thrown into the furnace, how much more will He clothe you, O men of little faith!"

Computer Overload.

2010-11-22T08:57:00.000-08:00

I'm one of those people who truly enjoys everything about Facebook. I love responding to my friends posts. I have had days when I've spent hours praying over some of my fb friends who are struggling (most of those fellow POTSies). I get a kick out of U-tube posts, checking out new pics and the funny status reports. I treasure the comments others post on my status reports, and enjoy letting others know they're heard. I'm amused at the Frontierville's often controversial posts. I love to play FV even if I feel like a lab rat running through a maze for an insignificant prize at the end. Some of my favorite bazaar prizes was a monolith sized sun dial, a stars and stripes barrel and my all time favorite.....a Trojan rabbit. What would the 18th century frontier be without a trojan rabbit?

Last week I had a computer overload. Work was exhausting, my students were more challenging than usual. Though "under the table boy" only had three difficult days out of five. I believe his mother should be considered for saint status. She is one of the most amazing woman I've come across. Last week I needed to work on report cards. I had planned on working on six or seven a day so that I wouldn't be overwhelmed. I started on Monday and when I returned on Tuesday my report cards were cyber breeding and had doubled. The computer tech guy had already left for the day, so Tuesday was a wash. The tech guy was able to fix my problem quickly on Wednesday and I was able to complete a dozen report cards that afternoon. Now to top things off, some suit at the district office decided this week would be a perfect week to do benchmark testing! I know you'll be shocked to hear that kindergartners are not able to bubble in scan tron sheets, so guess who gets to manually put in 32 benchmark test sheets into the system? That would be me! They were due on Thursday, so I needed to get them in on Wednesday afternoon. To start things off, I couldn't get into the system, thank God the tech guy was still in and walking down the hall when I needed him! He gets me me into the system, thanks Colin! I begin entering my student's scores. I push the tab butten too many times on the tenth students score sheet, so I backspace and lose all scores I've input so far. My body begins to feel the fatigue and my hands and feet are in pain from the pooling of blood in my extremities. I decide to put my feet on the computer desk with both feet on the outside edges of the keyboard. It sounds uncomfortable, but I'm very flexible. I start over, and lose the scores a second time half way through the process. Now some of you might be thinking, "Why don't you save the scores you input every so often?". The answer is, the computers are very slow and it takes forever to save the scores, it's almost faster to lose the scores and start over. I kept thinking I wouldn't make the same mistake, but my fingers are so use to responding to things a certain way that the habit was hard to break. Well, the custodian (who happened to be a sub) walked in my room to do his job, he gave me a quizzical look. I'm sure my position looked a bit odd to him. He begins vacuuming, and I continued to enter my students scores for the third time. I lost the scores again! I begin screaming "NO,NO, NOT AGAIN!" over and over. The custodian stopped vacuuming and gave me a "Are you insane?" look. He shook his head, I apologized and he quickly finished cleaning my room and left. I'm surprised the men in the white coats didn't make a visit to my room. I finally smartened up and entered all the correct scores globally (enter the first student's score, push a global button, and all the students have the same score), then I saved those scores and had a salty snack, came back with a little more sanity, and finally changed the students scores that were wrong, and I was done!

When I got home that night, I had no desire to touch my computer. My friend Lisa who works on a computer all day has told me she has no desire to get on the computer once she gets home from work. I never understood her reasoning until this week. I was surprised that I didn't want to check on my friends, I didn't want to watch funny u-tube videos and I didn't want to complete missions on Frontierville. I just wanted to veg out. Finally on Saturday I started playing Frontierville, but I still avoided social contacts and had no desire to even write my blog (which I usually find fun and stimulating). Thank goodness I feel more like my old self today. I'm looking forward to checking out my friends statuses, praying, laughing, watching u-tube videos and playing Frontierville.

I have a week off from teaching, and time to enjoy Thanksgiving. POTS has given me a reason to be thankful daily for the things I can do, and the blessings God has given me. Having an attitude of gratitude does change your perspective. Wishing all of you a joyful time of family, friends and health.

Blessings,
Michele

2010-11-13T12:29:00.000-08:00

This seems to be the week of MORE! MORE concerns that my POTS is getting worse. MORE stress from work with report cards and benchmarks due. MORE fear as I face a new diagnosis and a doctor who appears afraid to treat me. MORE darkness as the increase in meds makes me feel like I'm in a valley I desperately don't want to be in. MORE losses of things I love because of POTS. MORE chemical sensitivities, no more stepping out my door during cold weather to smell one of my favorite smells, burning fireplaces! MORE fatigue, MORE nausea and MORE sleep deprivation!

I want MORE of a social life. I want MORE energy to do the stuff I have to ask help for. I want MORE of my old self back. I want MORE time without the constant reminder that I have POTS.

I'll be so thankful when my body has adjusted to the med increase and I'm less whinny and MORE like my old more cheerful self!

Need to be MORE inspiring,
Michele

Psalm 40:2
He brought me out of the pit of destruction, out of the miry clay; And He set my feet upon a rock making my footsteps firm.

Fire Walker?

2010-11-11T07:11:00.000-08:00

My sense of humor seems to take a front seat whenever I get news that tries to take me to my "unhappy" place. As I lie in bed contemplating my visit with my new neurologist and his diagnosis of peripheral neuropathy my humorous part of my brain decided to come up with what I could do with my new symptom or talent (to be on the positive side). Visions of fire walkers began dancing in my head! Hey, I could totally do that and look and appear to master the whole "mind over matter" thing! The funny thing about my imagination is it's pretty detailed. I can hear Brick House by the Commodores playing in the background as I strut across the burning rocks in a spandex jumpsuit that only members of a Jane Fonda '80's workout video could pull off. The people around me are clapping and bouncing to the music clad in shorts and t-shirts of the tropical Paradise they're surrounded by. As specific realities of my POTS symptoms set in so do the details of the scene in my head. Being temperature sensitive the scene changes from a tropical paradise to the frozen arctic. The spandex jumpsuit is replaced by a fur lined parka and the people are no longer swaying to the music in shorts and t-shirts, but huge coats and lined snow pants. There's no music playing, only the chattering of teeth by the crowd. As quickly as the scene changed from tropical paradise to arctic freeze, so did the humor change to hard truth. This new diagnosis isn't really funny.

As the doctor was moving a metal rod from my toes and up my leg, the reality that I couldn't feel the rod below my shin left me puzzled. The same thing was done with my fingertips up my arm, at first I was relieved that I could feel the rod on my fingertips, but then I was shocked to realize the rod was freezing cold at the fold of my elbow, and I didn't know it was cold until then. Peripheral neuropathy the doctor notes and on to other test and a discussion on treating my recently increased POTS symptoms. The discussion on neuropathy would have to wait as I educated the doctor on how I was treated in the past and a bit of hand holding (my holding his hand) as I encouraged him in proceeding with my typical regimen to combat my symptoms. I left the office with a lab slip for blood work and new questions to my already long list of unknowns with this disease.

This new diagnosis wasn't a total surprise, I had suspected it for almost a year now. Many of my POTSy friends have shared their experiences with neuropathy, and my symptoms seemed to echo theirs. But I've always felt that until I had a diagnosis, I would keep on my rose colored glasses and pretend my symptoms were just something else! I never seemed to ask the question about neuropathy in the past, because it always seems like we're dealing with some other more life threatening symptom of this disease, or major hurdles such as wheel chairs and handicapped parking.

I've noticed that I've been given the truth of this disease in small bite size chunks. Heart rate and dizziness chunk, nausea and fatigue chunk, wheel chair and handicapped parking chunk, migraines and supplements chunk, and now new doctor, health plan and neuropathy chunk. Never more than I can chew, never more than I can handle. God knows me too well and because of that I'll trust that this too is as manageable as all the other chunks.

Still inspired, Michele

Proverbs 15:15
All the days of the afflicted are bad, but a cheerful heart has a continual feast.

Neuropathy may be associated with varying combinations of weakness, autonomic changes, and sensory changes. Loss of muscle bulk or fasciculations, a particular fine twitching of muscle, may be seen. Sensory symptoms encompass loss of sensation and "positive" phenomena including pain. Symptoms depend on the type of nerves affected (motor, sensory, or autonomic) and where the nerves are located in the body. One or more types of nerves may be affected. Common symptoms associated with damage to the motor nerve are muscle weakness, cramps, and spasms. Loss of balance and coordination may also occur. Damage to the sensory nerve can produce tingling, numbness, and pain. Pain associated with this nerve is described in various ways such as the following: sensation of wearing an invisible "glove" or "sock", burning, freezing, or electric-like, extreme sensitivity to touch. The autonomic nerve damage causes problems with involuntary functions leading to symptoms such as abnormal blood pressure and heart rate, reduced ability to perspire, constipation, bladder dysfunction (e.g., incontinence), and sexual dysfunction.

Hard Choices

2010-11-06T05:59:00.000-07:00

In the U.S.A. we have 4 choices in health care:
1.Medicare for the poor, disabled and retired.
2.HMO's the least expensive private insurance. Clients must use doctors within their network, a long and difficult referral process for specialists and many prescriptions are not covered.
3.PPO's the most expensive private insurance. Clients choose their doctors and most prescriptions are covered.
4.Pay for your own medical services out of pocket.

As a child my father taught me that the most important thing when providing for your family was to make sure you had insurance. Life insurance, car insurance and health insurance were all a must. Having a sister with Cerebral Palsy made the importance of having insurance a reality.

As a young mom I was faced with a difficult choice of staying home with my children or working to provide health insurance for my family (my former husbands employer didn't provide health insurance). I chose to work even though childcare took 75% of my salary, I was pretty much working for the insurance benefits!

I have been very fortunate over the past 20 years that my employer has provided me with a PPO with very minimum out of pocket expenses and great service. Last Spring I was faced with a very difficult decision. My PPO would now cost me $360 dollars a month to keep. Now add the fact that I was just informed that I would be taking a 20%pay cut (roughly $1,600 a month) and the decision was made for me. Unfortunately for me my budget is a bit tight because of my recent divorce and purchasing my home from my former husband at the top of the market. I couldn't sell my home if I wanted to because my home took a 33% drop in value because of the recession. Don't get me wrong, my former husband deserved every penny, just bum luck on the timing of the recession.

So here I am with an HMO and a bit concerned over the care I might receive. I tried very hard to be proactive. I chose a group that refers patients to my neurologist,as most POTSy's know a good neuro is the key to getting better. I also made my general practitioners appointment the first week that my new insurance was activated (which was a real hassel in itself). I had my prescriptions changed over, and one denied the first day grrrr.....! I requested the referral to my neuro and was told that this group doesn't refer to my neuro! I was told that they would attempt the referral process and that was the last I had heard about it.

I have been very blessed to have been in great health (for a POTSy)this past month, so I had not given the referral process another thought. Which was a huge mistake on my part. With teaching 32 students and a few "special" students I've been a bit preoccupied. I still have to laugh (rather than cry) at the irony, I have 12 more students and get paid 20% less. Now some would say you're working less hours, NOT. Prepping for 32 is much more time consuming, and hence I'm putting in more hours!

Well, all that stress and longer hours is finally catching up with my POTSy body. All week I've been watching the warning signs that my body was on the down swing, shortness of breath, very purple hands and feet and extreme fatigue, but I'm a push through it type, so I kept working. On Thursday my body said "that's enough, you need to rest!" So I requested a half day sub and went home and took a much needed nap. When I woke up I decided to call my new doctor and check on my referral. I was told it was denied. Being too sick to deal with the stress of making numerous phone calls I called it a night.

On Friday during my lunch I called the patient advocate with my HMO to find out the process of fighting my denial. My advocate was actually very nice after I explained the reason for choosing her group. She told me she would do a little investigating and get back to me. A few hours later she told me that my neuro was never on the referral list and gave me the group he was connected with. She told me it would be a long process to switch and that she would recommend seeing their neuro and hopefully get the ball rolling on the referral process.

I call the neuro that I have been approved for and attempt to make an appointment. I'm put on hold and then told my appointment date would be December 2nd. I tell them I'll take the next available appointment, and I'm told that December 2nd is the next available! My voice goes up an octive and I explain that I have a rare disease and I can feel my body getting ready to shut down, can they please fit me in somewhere? I'm told "So sorry, this is the best I can do". I become panicky, because I know I'm on the road for a trip to the ER and an unwanted vacation in a hospital room without a view! In a shaky voice I ask the poor man on the other end of the line "So if I end up in the hospital who do I tell them my neuro is?", he responds, "You don't have a neuro, I'm sure they have someone in the hospital there who can help you." I start laughing hysterically (I'm sure at this point the man must have though I needed a psychologist and not a neuro). He confirmed my appointment time for December 2nd, and quickly got off the phone with me.

So here I sit, without a neuro, feeling very POTSyish and abandoned by my insurance company. What's this POTSy girl to do? Those of you who have shared the past four years with me know that God has carried me through a difficult divorce miraculously. He's helped me recover from an eating disorder that consummed every thought. He has comforted me through the death of my father and He gave me a quick POTS diagnosis and an amazing neuro. He will carry me through this bump in the road as well. I will give this to God and use the wisdom and resources He has provided me to get through this. This is nothing compared to losing the love of my life through a painful divorce.

Still inspired,
Michele

What would difficulties be without my favorite verse.
Jeremiah 29:11
I know the plans I have for you, declares the Lord, plans for welfare and not for calamity to give you a future and a hope.

POTS: Tornado warning!

2010-10-24T15:51:00.000-07:00

My life with POTS has left me feeling like I'm living the movie "The Wizard of Oz". One day I'm struggling with POTS symptoms, that resembles the bleak black and white world of Kansas. The next day I'm almost symptom free and living in the joyful, colorful world of Oz. After two years of having POTS, I'm still surprised by the fickleness of my symptoms. It often reminds me of a tornado destroying one house and the house next door is still completely in tact. The randomness of the destruction is a mystery.

The POTS tornado seems to skip over me at work! I've often shared how blessed and fortunate I am to be able to teach. I'm awed and amazed that I'm able to walk to my car at the end of each day. Teaching kindergarten is no easy task, most of my students have been the center of their families universe all their lives (as they should be). Now place those precious five year olds in a classroom with 31 other five year olds and only one teacher to meet all their needs and it's quite a shock to their little systems. Now add the hundred or so standards that the state of California requires me to teach them, the shoe tying, the emotional meltdowns, the glitches in the schedule and the daunting task of preparing them to be the best students they can possibly be is overwhelming at times. Being able to complete my day is nothing short of a miracle, so I celebrate this accomplishment daily, knowing God must have a purpose for me in this place.

The POTS tornado seems to touch down for odd reasons as well. Like grocery shopping (which I love), I'm always completely wiped out, exhausted and very symptomatic after every trip. POTS seems to strike during worship time also, singing leaves me out of breath and dizzy. The loudness of the worship band does odd things to my heart rate and adrenaline, I've learned to sit at the back of the church which has helped quite a bit. It can be so frustrating, today I went to the front of the church to pray with a friend (my heart wanted to be there so badly), the band music was roaring and so were my POTS symptoms. It was so distracting that I started to become angry, I was able to remind myself as to why I was there, and put my mind back on track and finish what I was called to do in the first place.

I often wonder at the randomness of the symptoms. Why can I do such a strenuous job such as teaching and yet shopping, singing and worship music sends me crashing. I'm learning to be thankful for what I can do, and ask God for answers as to what I can't do. If I listen hard enough I'm sure He'll answer!

Inspired and learning,
Michele

Living the Moment

2010-10-16T06:02:00.000-07:00

Before my POTS diagnosis I woke up in the morning, got ready for work, worked hard, looked forward to the end of my day, and counted the days or hours for the weekend to hit. I loved my career and enjoyed what I did every day, but I looked forward to my time away from work. I often see TGIF as someones status on FB, I've never seen a TGIM. Work is some place to make money to pay the bills and do the things you enjoy outside of work.

Work became something completely different for me after my POTS diagnosis. When I was hosplitalized I could barely walk from my bed to the bathroom without being completely exhausted, dizzy, out of breath and as white as a sheet. I became a "House" episode. My heart,lungs and brain all checked out normal (yes, even my brain). It wasn't until I told the doctors to check my heart rate and blood pressure laying down and standing up did my diagnosis become obvious. I was told my condition is rare, the treatments varied in each patient, and I may or may not recover. I didn't realize at the time how scary those statements should be to me. I was given several meds to try (some worked and some didn't), and a short list of things to avoid. The list made it pretty obvious that mornings were gong to be difficult, and I still chuckle at one of the items : Avoid having a b.m. in the morning. How am I suppose to do that, I've done my big business every morning for as long as I can remember! Most of my education I picked up from other POTSies, I don't know what I'd do without their knowledge and support! When I first returned to work there was a deep appreciation for the fact that I could go to work. Work no longer was I place I had to go to five days a week, but a place I get to go to five days a week. Believe me when I say it isn't easy. Every day I wake up nauseated, dizzy, and exhausted.

During this journey, I became connected with many amazing people who share this wonderful diagnosis. What I discovered was the majority of them have it so much worse than I do. Daily migraines, fainting (I have never fainted, only feel close to fainting), severe digestive issues, severe pain and fatigue, tachycardia and bradycardia, and weak swollen and discolored limbs. My friends can't work, and want to work so badly. They deal with sever chronic illness every minute of their lives, and we complain about a rough day at work.

In the beginning I had a deep appreciation for being able to work, but that has grown into something much more. I'm learning to appreciate every minute. Every word I speak, every communication I acknowledge can leave a life changing experience in someone I touch, no matter how small the event may seem. Even in chaos and exhaustion I have a choice as to how I use it. Sometimes when my classroom is being unruly, I'll close my eyes for a second and appreciate the fact that life is happening around me. The rules in my room are important, but how I enforce those rules is just as important. I'm looking less at the clock as a way to measure the end of my day, and more as a measure of what more I can do in the time I have left.

I've been given twelve more students in my class, and at first my attitude was this is wrong, I can't do it, and I'm not getting paid enough to do this. What I realized is that I get to have twelve more students in my room, they will change who I am and how I teach, and I have the opportunity to change and affect who they are. Is it wrong, YES! Developmentally kindergarten and first grade should only have 20 students. I can't change the state budget, but I can accept what I have and make the most of this opportunity.

I've also seen a change in my attitude about parent-teacher conferences. These conferences add two to three hours to my day. For those of you who are not in education, I get paid for a 6.5 hour day, not for eleven or twelve. I'm not given a stipend or extra pay, it's part of my job description. I've always done this part of my job grudgingly. A week of hard labor, and the hope of getting them complete without any parental conflicts. But this year was so different. I have such a supportive group of parents, and I love my students, so I couldn't wait to spend some one on one time with these amazing parents. This time I enjoyed the insight I received from my parents about my students, and feeling like we had connected as a team to provide success for their students was a joy! Last night I posted "joyfully exhausted" as my status because I knew every moment was well invested and worth the exhaustion I felt at the end of my day.

I guess my target audience would be those who are relatively healthy. Work doesn't have to be a prison sentence, "time served". There are people who are chronically ill who would give their right arm to be in your shoes. Try to think more about the time at work as opportunities to make a difference, and the people around you as precious moments to make a positive difference in someone. Many of my friends are alone and would love to be able to touch someones life (for some talking makes POTSies out of breath and dizzy, including myself).

For my POTSy friends, try not to waste precious time focusing on the can'ts. Dysautonomia is a thief, and has stolen our health and many of the things we enjoy in life. You have family and friends that need your heart, compassion and moral strength. Please don't let this disease steal the joy out of the moments you spend with others, make each moment count, because to be honest there's always someone out there who has it allot worse than you do.

Always inspired,
Michele

Psalms 126:5
Those who sow in tears shall reap with joyful shouting.

I'm a Super Freak, Super Freak, I'm super Freaky!

2010-10-09T18:20:00.000-07:00

I'm a super freak! I would have downloaded Rick Jame's Super Freak, but I'm not THAT KIND of super freak. The song is kind of fun and catchy though.

It's Friday, and it has been a busy week. Back to school night, unruly students, PTA meeting, picture day, and alphabet party to end it all. I had plenty of volunteers, and the students had a blast using foamy letters to make A,B,C hats, letter name necklaces, stamping A,B,C's on vests, shaving cream writing and play-dough letters. But managing time, behavior, checking on groups and taking photographs can be very tiring. Thankfully all went well the rest of the day, but I was pooped.

To finish off the day I had a doctors appointment with my new doctor. I had to change insurance plans because of an increase of $350 on my former and much better plan. I was very nervous going from the top of the line insurance to the bottom. It's scary when your healthy, add having a rare chronic disease and it can be a nightmare. The new doctor was very nice. Then I told her I had dysautonomia and she replied "You have what?". I said it a second time, and she made a pretty good guess at what it is by it's name, which is a better response than I'm use to getting. I gave her my symptoms list along with the medications that work. While I was sitting on the examining table my feet turned a hideous shade of purple (my feet have a tendency to show off on the examining table), and her eyes popped out and she said "Is this normal?" I giggled and said yes, and apologized for not including that symptom in the list I just recited. She informed me that I should get some compression stockings, and I giggled again and said "I do wear them, but I'm a bit naked right now." She giggled too, so we're off to a good start. At least she gets my bazaar sense of humor. I requested a referral to my neurologist who specializes in POTS, and she informed me that it's next to impossible to get a referral outside their building. My sole purpose in choosing that medical group was that they were the only one in my plan to refer to my specialist. So I guess I'm on the road for some red tape and hassles. Oh well, what's new.

So I get home and I'm feeling more fatigued than usual. I take off my sweater, and my hands and arms are red, which is a new thing for me (my hands are usually red and purple and that's all). To top it off my arms are blotchy and spotty! I take off my shoes, and notice my feet and lower legs look the same. I decide to take it easy and I stick a frozen dinner inside the microwave. In 5 minutes and no effort dinner is ready. I watch "Say Yes to the Dress" and decide to call it a night. I get ready for my nice cool bath and as I step into the tub I notice my whole body has blotchy red spots "Nice"! As I dry off my swollen purple feet and my blotchy body, I start crying. I'M A FREAK! Then my wonderful sense of humor comes back and Super Freak begins to play in my head, and I feel a bit better. When I put my socks on I notice my feet are so red that they can be seen through my socks. I decide to show my daughter my freakiness, and I tell her that I'M A FREAK! She giggles and tells me "No mom, you're special!". Special is good, and a much more positive way to see things. So "I'm super special, super special, I'm super special now, da-da-da-dum, da-dum, da-dum, da-da-da-dum, da-dum, da-dum".

Inspired,
Michele

P.S. It's so funny my week ended this way. On Wednesday I actually thought I might be in remission, I felt almost normal Sunday through Thursday, I hadn't felt that good since before POTS. Funny how quickly things can change, just gotta role with the punches.

Matt:10:8
Heal the sick, raise the dead, cleanse the lepers, cast out demons, freely you have received, freely give.

My Favorite Discoveries

2010-10-03T16:14:00.000-07:00

I thought I would designate a post to some of the things I've discovered that have helped me cope with having POTS. Some are personal life lessons, and some can be purchased at the store or on line.

My very favorite thing is my Mio heart rate monitor watch. For over a year I didn't quite know what my heart was doing, and unfortunately I confused bradycardia symptoms (low heart rate) with tachycardia symptoms (high heart rate). Knowing what my heart is doing, and how bad it really is has given me peace of mind.

My ice vest is one of the ugliest pieces of clothing I own, but also one of the most important. My body doesn't respond to temperature like the rest of the world. My body temperature rises and falls in extreme weather. I purchased the Artic Heat ice vest because it's light weight and doesn't soak my clothing. It was a bit expensive but definitely worth it.

For a year I carried packets of salt with me everywhere, ewww gross! I discovered from some helpful POTSies that salt tablets are way better. Please check with your doctor about dosage and whether this is a good option for you. And don't forget plenty of water to go with it.

I spent the first year of my POTS diagnosis in a continuous state of nausea. I thought it might be the medications I was on. I discovered by accident that if I ate small meals all day that the nausea only exists in the morning hours.

Finding the right medication combination can be a long and frustrating road. In the beginning of my medication trial it was very frightening. The first medication they tried made my heart raced so high, that after I vomited I was on watch for 24 hours. The medications I'm on now had such bad side effects that I became suicidal. The sad thing was, that the medication worked very well with my POTS symptoms, and they didn't have any alternative medications to give me. I was forced to live through the emotional battle or become bed ridden and an invalid for the rest of my life. It took a little over a year, but I'm now able to take my medications without the scary side effects. What a difficult choice that was! Be patient, and be in constant communication with your doctor.

Living with POTS is like living with the Blob, the symptoms change from day to day, and sometimes it's hard to tell the difference from a "normal" illnesses and POTS symptoms. Being connected with a website support group is very helpful. People who share this unique disease usually can answer questions you have. Often times reading posts from others will shed some light on symptoms that I have that I didn't know were POTS related. People who have lived with POTS often have a wealth of information that our doctors may not have tried. And always seek the advice of your doctor when you hear about something new.

Like I said in the previous paragraph, living with POTS is like living with the Blob. Many of us share similar symptoms but our bodies react to medications differently. Some people with POTS are very symptomatic and are still on the road of finding something that works for them, and others have found treatments that allow them to live close to normal lives. Remember everyone is different.

I often experience survivors guilt, feeling bad for those who have it so much worse than I do. But I have learned to appreciate what I can do, because there are so many who have it worse. Even if I was living with the worse case scenario of POTS, it still would be better than paralysis, being a burn victim or so many other debilitating diseases. POTS has taken so much away, but I do have a choice as to how I deal with that loss. I've learned to focus on what I can do, and not on what I can't.

POTS has friends, don't be surprised if you become scent sensitive or intolerant. I became very dizzy at a bon fire at church one day, who knew? Sound sensitivity was very surprising, my heart rate went through the roof listening to very loud praise music at church. Ehler Danlos Syndrome, Raynauds, Irritable Bowel Syndrome, and Lupus usually go hand in hand with POTS. Just be prepared for anything.

I try to keep my friends and family in the loop of how things are going for me, but I'm also learning that it's a process for them too. They have lost the Michele they knew well, and they have been given a different Michele in it's place. Don't forget to give them some grace, and communicate what you need from them.

I have been a servant most of my life, serving and helping are things I enjoy. POTS has made that difficult. I've learned to accept help and ask for help, neither of these come natural. I've learned to accept that the warm fuzzy feeling I would get from helping others is now happening to those who help and serve me. God is at work in those around me, and I need to sit back and get out of the way.

When writing my blog, I try really hard not to pound people over the head with my faith, I'm more of a love people to Jesus, than a hit people over the head with a bible type. Being a Christian is at the core of who I am, and not sharing how God has made a difference in dealing with POTS would be denying who I am. So hear it goes, I trust that I have POTS for a reason, I believe that God uses my circumstances for His purposes. I have seen God work miracles through my POTS diagnosis, and I've seen God change my heart through the difficult circumstances. I'm not saying this is easy, there are days when I'm frustrated or angry with things that happen to me with POTS, but God gave me feelings for a reason and I'm learning it's OK to ask "Why this God?", and I'm learning to wait patiently for answers. Because He always answers, maybe not in my timing, but in His.

Truly inspired,
Michele

Jeremiah 29:11
For I know the plans that I have for you, declares the Lord, plans for welfare and not for calamity to give you a future and a hope.
My life verse.

HOT, Hot, hot!

2010-09-27T16:59:00.000-07:00

It was 109 degrees in beautiful Southern California today! I have been dreading this weather all year. I thought maybe the wonderfully cool summer was a prequel to an autumn closer to that of the autumn felt by the North Eastern US. But I was W-R-O-N-G wrong!!! I had already switched my boring summer wardrobe with my delightful winter clothes. Hello soft cashmere, leather boots and turtlenecks, good bye drab cotton t-shirts and leggings. I had my heart set for savory soups and delicious stews and roasts, enough with the fish, chicken and rabbit food!

I knew the heat was coming. One of the symptoms of POTS is temperature intolerance. I've often described the way I feel in the heat, to the scene in Harry Potter Chamber of Secrets, when Harry takes Pollyjuice Potion and his body goes through a very uncomfortable transformation. I feel like my blood is bubbling, a strange fatigue and tingling sensation takes over my limbs, my heart rate rises, I get very dizzy, my temperature rises a couple degrees and I feel very panicky. When I feel that way, I need to find a cool place and cool off immediately. If I don't I end up on the ground and my body shuts down. This is always followed by a trip to the hospital. Oxygen, an IV and a day or two in bed will usually get me back to my old self. But this is obviously something I want to avoid. Nothing like a public display in front of my students, parents and colleagues to make me look incompetent.

I'm very blessed to have an air conditioned classroom. But there are other hurdles to jump outside the classroom, and that was what I dreaded most. Usually I'm a worrier, but I'm finally learning that worrying gets me nowhere, and I need to trust that God has this all under control, even if it ends up being my worse case scenario. I'm also learning to look ahead and plan for the things that might cause me trouble. Finally I'm learning it's OK to ask for help.

One of my concerns was patriotic observance. It's a wonderful time where the whole school assembles together to pledge the flag, sing a patriotic song, make school announcements and say the school pledge. It's a very moving and special time of the school day. It usually lasts ten to fifteen minutes. On a hot day, it's one of my most difficult times. I'm very fortunate to have the support of the first grade team, who have offered to help me out if I ever need it. So I felt confident that this time of the day would be covered, and sure enough my kindergarten team mate took over my class during that time.

I was also concerned about lunch time, picking up my students after lunch means walking in the heat. It doesn't sound so difficult until you consider that walking with five year olds is and adventure in itself! The chances of at least one student falling down is very high, add a pushing or poking student to the mix, along with someone taking cuts, and a simple two minute walk turns into a stressful ten minute escapade! I asked my kindergarten team mate to give me a hand again, and she was kind enough to help. I followed lunch with indoor P.E., and my students were very well behaved!

I finished the day indoors in the wonderfully air conditioned classroom. It's time to go home, nothing dangerous there, WRONG! Walking to my car in 110 degrees can feel like a walk through the Sahara Desert without water. Then try getting into a car that has been sitting in the the hot sun all day, and it's as bad as it can get. I've had to pull over because my symptoms became too dangerous to drive with. I knew my drive was going to be tough, so I was fortunate enough that my daughter agreed to come to my rescue. She gets to my car ten minutes before I leave, and cools off the car before I get there. The only problem I had was that the longer cooler route to my car was hotter than I expected, and my ice vest was completely melted and warm by the time I got to my car.

A little preplanning along with some help from those around me, and living with POTS isn't so bad!

Inspired,
Michele

Psalm 139:17-18
How precious also are Your thoughts to me O God! If I should count them, they would outnumber the sand. When I am awake, I am still with You.

"Normal" sick leads to coughing, barf fest and a side bar of piddle pup!

2010-09-23T08:07:00.001-07:00

OK, so I was wrong to be excited about being "normal" sick! How could I have possibly thought that being "normal" sick wouldn't trigger my POTS symptoms. You would have thought that with the experiences of having a type 1 diabetic daughter, that I would have known better. I guess getting caught up in having some degree of a "normal" illness must have caused a short episode of brain fog.

Well the novelty of being "normal" sick wore off within 12 hours. "Normal sick" entails abnormal amounts of bodily fluid excreting from almost every part of the head that has holes, which unfortunately triggered some part of my stomach to rebel without warning the first night. There's nothing like the shock of waking up to a barf fest in the middle of the night. Then the wonderful realization that I can't get out of bed because of the extreme dizziness of POTS. For some reason my sense of humor seems to always kick in at times like these, and I had to giggle at the thought that just 12 hours ago I was actually joyful over having this "normal" illness! My body found it's payback for laughing at something I should have treated with a little more dread and respect! Well the adrenaline rush from being sick and the loss of my sleeping meds makes the evening a wash.

The next day feels like a normal sick day with the added bonus of worsening POTS symptoms from losing my POTS meds the night before. That night I head for bed with hopes and prayers to have a night that doesn't resemble the night before. My prayers are answered LOL, this night is definitely different from the night before. I wake up coughing, the kind of cough that feels like hairy little creatures are running along my air passages. The coughing gets out of control, and next thing I know I'm peeing like a puppy who's excited to see its owner, hmmm, no wonder I can relate so well to my kindergartners! So I head for the bathroom to change clothes and finish what I started. I'm all cleaned up, I head for the kitchen looking for something safe I can take to relieve my cough, when a second coughing jag begins. The room begins to spin, and a second set of clothing has just bit the dust. Now I'm really mad! There shouldn't be an ounce of fluid to create this problem 30 seconds after leaving the restroom, come on! I realize that it's just my body's sense of humor reminding me that it's in control, and until I crown it as my master, it will continue to torment and remind me that it is the boss of me! So I surrender control back to my body, and I promise never to take lightly any medical condition that crosses my path.

I know I'm not the only girl around who has "lost it", I do have friends who have confidentially shared (I promise I won't rat you out!). But I have to know, are girls the only ones with this problem, do guys suffer from this too? I'm sure I'll never get an answer to that question (who would admit to something as humbling as tinkling in your pants, oh yah, I just did lol), but then again, maybe they paid their dews during puberty! Well,it's kegel time!

Humbled and learning,
Michele

Job 2:10
Shall we indeed accept good from God and not accept adversity? In all this Job did not sin with his lips.
Lesson: All month God has blessed me with help in my room every single day! I will accept adversity in the same manner as the blessings.

Experiencing "Normal"

2010-09-21T08:18:00.000-07:00

I woke up yesterday morning with a runny nose and a sore throat. I actually smiled at the thought of being ill with something "normal". Since I work every day with the symptoms of POTS, I figured a cold or allergies would be a breeze! The beginning of the day went pretty much as usual, with just the added nose blowing. Though it would have been much harder without the help of my teacher friend Karen and a parent volunteer. But by the end of the day my body let me know that it was done,fever and fatigue set in. I would definitely need a substitute for the next day. So I went to the office to request a sub, which on this particular day I felt like Oliver begging for some gruel. Or in my words, "Oh please, amazing, wonderful person in charge of all the critical workings of our school, would you please in all your magnificence call a sub for me". My hands quivering as I give her my sub request. I get the look, then I hand her my paperwork and scuffle out of there as quickly as possible. I go back to my room and write my sub plans, which is almost as much work as going in to work myself. Two hours later my sub plans are completed. I'm not sure how understandable they are, but hopefully the sub will make it through the day in one piece!

I get home and cancel my plans for the prayer group that usually comes to my home on Monday nights, and I cheerfully explain to my friends that I think I have a cold. My friend Lisa complements me on my positive attitude about being ill, and I try to explain that it's the first time I think I've had a "normal" illness since my POTS diagnosis. She wishes me a speedy recovery, and I head for bed.

After I hung up the phone I pondered over why having a cold would actually make me happy. What I realized is that having a cold is something everyone can relate to. When you tell someone you have a cold they can go to their memory banks and connect with the typical symptoms of a cold (fever, cough, runny nose, sore throat), and they know it will probably last around a week. I get no quizzical looks from telling people I have a cold, instead I'm told to get some rest, and wishes for a quick recovery.

When I tell people I'm having a bad day with my symptoms of POTS, I usually get a blank stare, and well wishes. There isn't a single person in my daily life who has any idea of what POTS is like. My friends can't go into their lifetime of experiences and relate to what I have. It really is hard to understand an illness that encompasses a system no-one thinks about. No-one thinks about the fact that when they stand up something in their body tells the heart to pump more blood to their head, until that system doesn't work and you stand up and get so dizzy you almost faint. No-one thinks, hey I just ate dinner, I need to send extra blood to the stomach to aide in the digestive process. Not too many people can relate to waking up feeling like you've been chased by a mountain lion, all because your freaky body decided to have an adrenaline rush in the middle of the night for no reason. The average person expects to open their eyes every day and see clearly (unless you have typical vision problems that glasses can correct), blood still needs to be pumped to the eyes so you can see, on a bad POTS day I'm in a blur. No-one thinks to send blood to hands and feet, or what it's like when blood pools to those body parts and they look and feel like stuffed sausages, or the lack of blood flow feels like frost bite. There are no famous people like Michael J. Fox or Annette Funicello to bring a face to this syndrome,and so far I haven't seen epic or a Hallmark movie about POTS either! House has mentioned POTS once in an episode and there was an episode of Mystery Diagnosis that had a POTS patient, but again both shows specialize in rare and unknown disorders. It's funny, because when I was first hospitalized and I didn't know what I had, having so many tests, and the quizzical looks on the doctors faces gave me the feeling of being on an episode of House.

Now add the fact that many in the medical field have never heard of dysautonomia or POTS, can be frustrating. Imagine being in the ER feeling dizzy, heart rate in the 30's and short of breath trying to educate a doctor on your illness. I do carry a computer printout explaining POTS, and the medications I'm on, along with the best way to treat my symptoms if hospitalized. It is a bit odd to walk into an emergency room and tell the doctor to hook you up to an IV and oxygen, and if the symptoms don't improve after an hour to call my neurologist.

I have a cold, my nose runneth over,and I gladly embrace my softie box of tissue. Much better than my POTSy nemesis my porcelain lover.

Recovering,
Michele

Multi purpose POTS meds, from anidepressants to erectile dysfunction

2010-08-24T13:59:00.000-07:00

If you ask anyone with dysautonomia how they feel about medication, you'll probably get feelings that stretch on the edges of both sides of a pendulum. On the one side is the dependence on medications to help us to function, without it many would be bed ridden. Medications that keep us from fainting, barfing, insomnia and fatigue. We can't help but be thankful for the benefits they offer. On the other side of the pendulum, is the side effects of those medications, the inability for those medications to take away all the symptoms and the emotional roller coaster of trying one medication after another to find something that helps us to feel somewhere close to normal. And then when they don't work picking yourself up off the floor, dusting yourself off, put a smile back on your face, only to go through the process over and over again searching for the cure.

Pre-POTS Michele would be totally surprised by the fact that I would ever be dependent on medication to survive. As a young adult I often would refuse to take aspirin when I had a head ache, and even would chuckle at my close friend's family who sold Shakley (a vitamin and supplement business). I remember my friends dad who would explain the benefits of each vitamin in his overflowing fist of vitamins he took daily. In my head I would giggle at the purpose of taking alfalfa, I mean I'm not a cow for goodness sake! Why would a young healthy adult need to take vitamins for anyway? The fact that I survived young adulthood is a complete shock. My daily diet consisted of a carnation breakfast shake in the morning, a happy meal (cheeseburger, french fries and a coke) for lunch, and a brownie and coke for dinner. Who needs vitamin supplements with a diet like that.

Now old Michele is still resistant to being on medication, but the realistic Michele knows that I need them to function. Having a disease that so little is known about, makes it tricky for doctors to prescribe medications to treat it. Many of us feel like Guinea pigs, testing one medication after another, only to watch our bodies baulk from those that don't work. For me, when I hear about something new that the doctor wants to try I've become optimistically cynical. I dread putting my body through the possibility of negative side effects, but optimistic about the possibilities that this could be the one that works.

I was recently given the news from my general practitioner that she reviewed my case with a doctor from the Mayo clinic, he gave her some recommendations for my treatment for POTS. The recommendation was for a new supplement that would help with the treatment of the vascular issues of my POTS symptoms. She chuckled as she explained that this supplement was commonly used in patients with erectile dysfunction. To sound professional she immediately went into explaining how the supplement worked on my vascular sytem and gave me a dose recommendation. When we hung up the phone I had to laugh, it seems that many of my medications I take have multi-purposes. I take an SSRI which is mostly used as an antidepressant for vascular issues and now this new supplement for erectile dysfunction which is also being used for vascular issues. I did my homework on the supplement, and the information from WebMd seemed to put a positive light to the supplement, so I decided it was worth a try. The good news is, it's been a week and a half on the new supplement, my body has not rejected it with it's common symptoms of nausea, vomiting or digestive tract issues. Though I am experiencing a strong desire to listen to old school '80's music and a craving for milk duds. On the positive side I'm experiencing less if no fatigue, and I seem to have more energy at the end of the day.I will consider this a victory if I continue to feel the same after three weeks. It makes me wonder how many other drugs are out there that are used for something else that they may find could help my condition. Maybe that anti-fungal pill might actually work on my nausea, who knows.

Always inspired,
Michele

Michael Jackson, Howard Hughes and Me!

2010-08-16T09:53:00.000-07:00

What could I possibly have in common with Michael Jackson or Howard Hughes? It's definitely not the money or fame. I can't dance (though my inner diva sometimes believes I can) or design aircraft. The commonalities may seem illusive, but they're actually reclusive. All three of us have different reasons for choosing to be separated from society, each of us has made a conscious choice to be alone.

I should be disturbed by the fact that I don't have a problem with spending most of my time alone. It was only a few months ago that I wrote the blog "Friendship and Chronic Illness", where I seemed upset with my new lifestyle, where being alone was not a preference, but a byproduct of being chronically ill. Now being alone is as comfortable as a good book and my temperpedic bed.

The way I see it, being home is safe and easy. It's the one place I can control. If I need to put my feet up I can. If I'm hot I can turn on the air conditioning. If I'm hungry I can eat. It's quiet in my house and my kids enjoy the peace as well. It's a stress free environment. If I feel faint or nauseated, there's no one around to feel embarrassed about my condition. At home I can just deal with it with no explanations.

Going out has become work, and my constant brain fog has caused me to forget things like water to keep me hydrated on my trips out. I know I could make a check-off list, but to be honest I've kind of stopped caring. I'm like that diabetic teen who eats that candy just because they're tired of diabetes hanging over their head. I often feel trapped by the outside world. Yesterday I was sitting in church, the noise, getting up and down and the excitement level pushed my symptoms to veer its ugly head my way. But that's nothing compared to the feeling of sitting in a pew while my heart rate dips to 30 then followed by an annoying adrenaline rush that sends my heart rate soaring to 160. I can't leave or I might faint, all I want to do is lay down and wait for my heart to calm down. Now I know my dear friends would be fine with me laying down on the pew next to them, but most of the church is aware of my condition and I really, really don't want to bring attention to myself. At home I can lay down like a dead fish out of water and no one knows I'm floundering!

Reading a book, watching TV or sitting at my computer would have never been on the top of my free time list before POTS, but I've learned to settle for this almost reclusive lifestyle. I do have a few exceptions that seem to fit in my comfort zone. I have an amazing pair of friends who come to my house once a week for sharing and prayer, and a once a month card making night. I will continue to push myself to go to church, God calls for us to commune with one another and I know I can't do this alone. Now if I become a horder and my home unlivable and you don't see me for weeks, please do an intervention.

Always inspired,
Michele the hermit

Fear Factor Tachycardia/Bradycardia

2010-07-31T08:35:00.000-07:00

If you had asked me two years ago what tachycardia or bradycardia meant, I would have shrugged my shoulders and given you a puzzled look. Now those two words are as familiar as chocolate ice cream and cream puffs. For those of you unfamiliar with their meaning; Bradycardia is defined as a resting heart rate of under 60 beats per minute, though it is seldom symptomatic until the rate drops below 50 beat/min. It may cause cardiac arrest in some patients, because those with bradycardia may not be pumping enough oxygen to their heart. It sometimes results in fainting, shortness of breath, and if severe enough, death. Tachycardia typically refers to a heart rate that exceeds the normal range for a resting heart rate. It can be very dangerous depending on how hard the heart is working and the activity. Normal heart rate is usually 60-100 beats per minute.

I thought I'd share what goes on in my head when I experience my friends bradycardia and tachycardia (I often refer to as brady and tachy). I could be reading or watching TV, when I begin to feel a thump in my chest and a ticht squeeze in my heart, a second or two later another strong thump, it's a strong slow steady beat of my heart against my chest. I figure because I am resting I must be experiencing brachycardia, so I check my watch that has a heart rate monitor, and sure enough I have a heart rate of 54. I'm thinking, hmmm not too bad but something to pay attention to. The thumping soon gets further apart, and I'm beginning to breath a little faster, my lungs burn and I feel a bit dizzy. I check my monitor, it reads 46. I begin to worry that my heart may just stop. I'm feeling worse and my monitor says my heart rate is 39 and fear sets in and I begin to wonder if I'm going to survive this one. Next thing I know I feel an adrenaline rush, and my heart starts to pick up; 47...58...72...94...110...143...157, now I'm wondering if my heart is going to explode! My arms and legs are tingly, my heart is beating through my chest quickly, and I now wonder if I'm going to have a heart attack! In five minutes my heart rate has gone from 39 to 157, now the chest pain begins because my heart has just had a work out. Again I wonder if I should be worried, I think to myself "I always survive these radical episodes, maybe there's nothing to worry about?" But then another part of me says "What if this is the one time I shouldn't ignore it?". Those two opposing thoughts have very different consequence. If I went to the hospital every time my chest pain was practically unbearable I'd be there every day, but one of these days my heart may just decide it's had enough and ignoring it could be fatal! I know I've survived this so many times I often chastise myself for worrying, but I'll be honest, it's just plain scary!

I have so many dysautonomia friends on facebook. They are the most brave and couragous people I have ever met. They often laugh and push through the pain they live with daily. On occasion one of them will share on their post that they are experiencing extreme heart rate fluctuations and I can usually feel that twinge of fear in their post. I often fear for them as I fear for myself, will this be the one time bracycardia or tachycardia goes too far? Will my friend survive this episode? All I can do is pray for them and give it to God as I do every time I experience it for myself.

Always inspired,
Michele

The Happiest Place on Earth!

2010-07-29T08:26:00.000-07:00

If you you live in Southern California you might think that Disneyland is the happiest place on earth, but for the rare few like myself, that's not the case. I was kidnapped last year for my birthday, and my awesome friends thought a visit to Disneyland would be the perfect gift! The time at Disneyland with those friends was absolutely amazing, but I personally don't get the draw to the place???? I just don't get how spending long periods of time in line to see the same dolls sing "It's a Small, Small World" over and over could possibly be exciting. The pirates are still chasing woman around and around and the ghost in the "Haunted Mansion" still plops himself next to you at the end of the ride. The balloons, hats and food are still the same as they were 40 years ago when I visited there as a child. Now I could be a bit jaded because I've been there so many times, and that may be the reason it has lost its magic for me. Though I do know people who go quit often and love it there.

I'm sure many of you wouldn't be too shocked to learn that my happiest place on earth would involve some sort of shopping. The middle of July was my favorite stores annual anniversary sale, woohoo! The catalogue for the sale comes a week before the sale, so I have a full week to drool over the shorty black swade boots, the Michael Kors pencil pants and Nine West blazer with the leather patches on the elbows! I decided I would take this slowly (the sale lasts three weeks), making a few trips and pace myself would be a smart way to approach it.

My first trip would be the shoe department, I can't imagine anything lovelier than a half a football field size space filled with nothing but designer shoes on orderly displays sorted by style, sigh. I've decided to shop for boots for my first visit, and had my selections ready to show the salesman. So I walk into the shoe department and after placing my eyeballs back in their sockets, and getting my heart rate back down to a semi normal level, I show the salesman my selections, and explain that I can't do to much shopping because of a medical condition. I tell him my size, and he heads to the back, he shortly returns with a plethora of boots for me to try on. I give him an appreciative smile and try on the studded black swade shorty boots with the big buckle on the side. They fit like a glove and I place them in the purchase pile. The salesman then pulls out a pair of very cute Frye boots for me to try on (they weren't on my list, but definitely too cute to pass up). I place my foot in the boot and I can't get my foot into the boot, I loop my fingers into the pulls on the side of the boots, and I can feel the energy zapping from my body. The next thing I know I've fallen to my side panting like a fish out of water. The salesman's eyes are now the size of saucers, and he asks if I'm OK. I show him one finger hoping he knows I just need a minute, I push myself slowly back up and try to compose myself. I look around and see all the lovely shoes, and I'm back in my happy place. The salesman recommends that I try standing and push my foot in, I really like the boots and give it a try. I stand up and bend over to reach for the pulls of the boots, that's when the room starts swaying and I fall forward, right into the poor salesman. He steadies me, and I fall back onto the couch. He gives me a concerned look and I immediately get the feeling he thinks I might be more trouble than the commission he could get from the sale. I smile and give up on the very cute boots, I'm thinking if my skinny foot doesn't fit, I can only imagine trying to get my BFF to fit! I explain to the salesman that if I have to go through this much trouble trying to get boots on in the morning, I would be too exhausted to go to work. He gives me a sympathetic smile, and I suggest something with a zipper. Another pair of darling knee high boots come out of the box and I am back in my happy place! The boots fit like a glove, and I place them in the purchase pile. I'm done for the day, and hand him my ATM card and purchase the boots. I head home with a gratifying smile on my face.

Round two is a planned shopping trip with my mom and daughter, first stop is the Nordstroms shoe department of course. I'm in need of a new pair of dress shoes and my mom and daughter want to try some things on as well. We've taken my wheelchair this time because we're planing on hitting several stores in the mall. I find a cute pair of patten leather flats to buy, and as I'm waiting I see a cute pair of leopard print flats, but ignore them because I don't really have allot to wear with them. My partners in crime also find very cute shoes to purchase, and we head up to the woman's clothing department. I find 3 pairs of the Michael Kors pencil pants, and make my purchase. I am now wishing I bought those cut leopard print flats, but I'm not going to drag my family back to the shoe department again.

We head out to the mall and go directly to my favorite lingerie store, Victoria Secret. I have a coupon for free panties, and it's a pretty place to shop. My 70 year old mom has never been there, and she picks up some thongs and pasties and heads for the sales counter, telling everyone she passes what she's purchasing. I turn several shades of red, and I hold on tightly to my shopping bag they let you use to conceal your purchases, in fear that my mom will show everyone my adorable yet very private pair of lace panties! We thankfully head out the door, and finish the rest of our shopping without any more embarrassing incidents (though my mom did tell the waitress we were eating lunch at about her special purchase).

Round three, last trip to my favorite store before the sale is over. I get there a few minutes early and too anxious to wait. I decide to walk around the building looking for the mall entrance. It's farther than I planned, and by the time I was in the store my heart rate was 117 and I was out of breath and shaking! I find a couch in the shoe department and lay down. I'm sure I looked like a drug addict or alcoholic, but I'm beyond caring at this point. A kind salesman sees me (the same one that helped me when I was with my family last week). He asks if I'm OK, and I tell him I just need a minute, and he asks where's my wheelchair. I explain that I usually don't need it if I'm just gong to one store, but that I stupidly had taken a longer route to get into the store and that I'd be fine in a minute. He waits quietly and I am quickly revived by my wonderful surroundings, the shoes are calling my name and the smell of fine leather is working its magic. I explain to the salesman the shoes I'm interested in and where I saw them last, and he heads back to get my shoes. He brings back several styles for me to try on, and I'm back in my happy place with a darling pair of Calvin Klein leopard print and patten leather flats!

The happiest place on earth is now my closet. I open the door close my eyes and smell the Italian leather and imagine all the possibilities. Happiness is all a matter of perspective.

Always inspired,
Shoe Diva Michele

Stressed Test

2010-07-16T13:57:00.000-07:00

Woohoo, survived my much dreaded stress test. It should be called "How stressed can you get test!" The stress for me began two weeks prior, when the doctor told me to schedule the test, and I'd need to go off my medications two days before testing. I haven't been off all my meds since I was diagnosed two years ago! The thought of barely being able to walk, having blue lips and being bed ridden came merrily dancing in my head! Then I started having fears of the test itself. I began to wonder, if I pass out, will someone turn off the machine before it throws me across the room? Now mind you, I do have a bit of an imagination that tends to get carried away a bit. I kept seeing those cartoon figures (me inserted) being thrown across the room by the conveyor belt thing you walk on. Then I remembered my last test in which I had been on my meds for a week prior and was in the best physical shape a 48 year old woman could be in. At the time, yoga and exercise were a daily activity for me, so peddling a stationary bike was no problem back then. Two years later and my muscles are the consistency of wet toilet paper, weak and squishy! So this test is definately going to be a bit more challenging than the last time.

So being the control freak that I am, I begin to plan out my day for the test. I figure if I have some control somewhere, I won't freak out too much. NOT! So I call my friend Von to come with me for my test, I inform my prayer partners and bible study group to pray (I'm praying as well). I plan to wear my very cute workout outfit that never gets a work out. I realize the morning of the test that they have they're own version of workout clothes there, so I decide to wear something cool and comfortable instead.

It's the day of the test, and I'm feeling pretty yucky, but thankfully not as yucky as I thought I would. My friend picks me up and we have a nice visit before the test (I highly recommend bringing a friend, it was the best part of the day). I'm called to the back and led to a room with the treadmill and the Frankenstein machines. I'm told to strip down and put on the attractive oversized gown, and to please wear the gown with the opening in the front! Why bother wearing a gown at all. I'm now wearing the sheet with armholes with "my girls" peeking out the front, and looking at the treadmill and thinking "I'm definately not dressed appropriately for this machine!" and, "I'm truly missing my cute workout outfit and it's missing an opportunity to get its first workout since it was purchased a year ago." The technician comes in and begins attaching sticky electrobe circles on my bare chest, and I don't even know her name! She begins with an echocardiogram, and starts talking to herself, then she asks me "how long have you had mitro valve prolaps?" my answer, "mitro what?", she repeats the question and I respond with "two minutes?" she laughs and says, "oh this is your first echo then?" I respond, "no, I've had two before this, so I guess this just developed", she responds, "no you're usually born with this.". The room is silent, because my head is thinking why wasn't this found before, and what the heck is a mitro prolaps valve (found out on webmd that it's no big deal, but it sounds kind of serious when your all wired up to a bunch of machines). She finishes the echo, and then begins attaching more wires to me along with an attractive belt that the wires are attached to. The doctor comes in and asks me to step on the treadmill machine. The machine starts, and after a minute I begin to feel like I've worried for nothing. Next thing I know the doctor says "how odd... are you double jointed?" I answer "yes in a few places, but not everywhere." he asks me to do the thumb trick, whick I can do, but I have now lost balance and trip on the machine. The doctor sighs and realizes he's working with someone who can't chew gum and walk at the same time, and stops questioning me. The machine begins to tilt up and speed up, I'm a little out of breath, but I'm doing fine, then the machine slows down and my heart begins beating through my chest, the doctor mumbles, "that's an odd time for adrenaline to kick in!" and I giggle in my head (odd is how I'd sum up my symptoms). I begin to get dizzy, and inform the doctor, and he responds with "can you go just a little longer?" In my head I'm screaming NO, but unfortunately I'm just trying to stay upright and I'm seeing spots and I know I'm going to go down any second, so I finally say "no, I'm really dizzy", he says "just a little more time!", I'm ready to drop, and I whisper "stop", and I let go of the machine and he stops it, and I drop. The doctor and the technician don't seem too surprised by my behavior and they tell me I need to go to the examining table, and I'm thinking just give me a minute guys, but they carry me impatiently to the table and the technician begins doing another echo. I guess my little episode was keeping the technician from getting another picture of my heart. So sorry I got in your way! They finish the test, and the doctor mumbles about rescheduling another appointment, and tells me I'm a bit out of shape as he heads for the door. I giggle in my head, because I'm too fog headed and too shocked to speak, I'm also wondering how in the heck he expects me to get a workout when I nearly faint every time I pushed my body in the slightest bit. Unfortunately the doctor can't hear what I'm saying in my head (that might be a good thing lol), and he leaves the room. The technician tells me to get dressed and to take my time, and she leaves. I'm still dizzy and out of breath, and the examining table is beginning to look like a really good place to take a nap. I rest for a while, get dressed, take my overdue meds and head for the appointment desk. The receptionist is busy, and after several minutes she begins to reschedule my appointment, at which time, the room begins to spin, and I make a b-line for the floor before it's too late. The receptionist peaks over the counter and asks if I'm ok (and I'm thinking to myself, I'm on the floor, does it look like I'm ok, but maybe people plopping to the floor is completely normal for this paricular office) so I respond with just a bit dizzy, I'll be fine in a few minutes. She finishes making my appointment (so I guess it's normal for people to plop down on the floor here), and she hands me my appointment card and walks me to the door. As I walk out, I think to myself, this went much better than I thought it would. I had visions of passing out, and emegency rooms with sound proof rooms that I might get lost in! Any day not spent in the emergency room is a very good day to me!

Always inspired,
Michele

No Parking

2010-07-12T11:59:00.000-07:00

It's days like today that I'm fully aware that God has a sense of humor, and I believe it's my purpose in life to make Him laugh! I'm beginning to believe that my life with dysautonomia is script for a new sitcom. The jist of the comedy is to see how many strange and funny situations you can put a chronically ill middle aged woman in.

It's a typical day for me, another one of many follow up appointments for my BFF (Big Fat Foot). I'm fully prepared, ice vest in ice chest, water, salty snacks and a good book to read during my typically long wait in the waiting room. I arrive at the parking lot 10 minutes early, only to find a line into the lot 50 cars long (exaggerated number, but 50 sounds much better than 12). When I finally pull into the lot there's a sign that says "Lot Full". Now how can a hospital parking lot possibly be full? My mind goes into typical "Michele" mode, I can't be late. I can never understand why I worry about being late for my doctors when they are always late for me. So I'm thinking I can park in the street somewhere, I've totally forgotten the fact that I have a handicapped parking placard, and I all want to do is make a b-line out of the lot. Unfortunately I'm behind an elderly woman who's afraid to move forward or sideways and seems to be struggling with a decision as to which direction she should go. Bingo, she makes a decision, I can see her backup lights heading straight for my front bumper! She decides to go backwards. I'm thinking as she's backing up that surely she sees me behind her, and that she won't run into me. As she gets closer I begin to worry and I take a look in my rear view mirror and notice that the car behind me is just inches from my rear bumper, and there's nowhere for me to go. Then BONK, sure enough she bumps into me! We both get out of our cars, and survey any damage, both cars are fine, but I'm experiencing an adrenaline rush and racing heart rate. I get back to my car in hopes to finally get out of that lot and into a spot somewhere not too far.

I find a parking spot two blocks away in a lot that says "City Water Building, No Parking unless you have official business". I'm thinking I'm two blocks away from my doctors office and I don't care what the sign says, I'm going to be late and this is the closest parking spot I can find. I have a handicapped parking placard, so I'll take a chance. I grab my bag and hurry to my appointment. There's a cool breeze and I'm thinking I should be fine. I walk a block and feel winded, I walk past the hospital entrance and feel dizzy. I'm only a building away, I tell myself "you can do this, you're almost there keep going". I walk about fifty steps and I'm very dizzy, everything is tilted, I can feel my heart beating through my chest and I'm short of breath. I know I can't go any further so plop myself on my butt, and place my head between my knees, I'll just sit there until I feel better. NOT! I didn't realize it at the time, but I guess I plopped myself right in front of the emergency room entrance! Now I couldn't find myself in front of the gift shop or the vending machines, NO, I end up in front of an Emergency room! Now in my head I'm not very worried about the physical state of my body, this is typical pushed myself too far, and I need to rest and I'll be fine mode of thought. But to someone looking at me in front of an emergency room door, I'm sure I looked totally different to them. A woman came to me and asked if I needed any help, I said "no" of course, but I guess that answer wasn't good enough for her. She replied you look terrible let me get you some help, I shook my head no, but she was insistent. Next thing I know there's a big burly orderly in front of me with a wheel chair trying to help me up. It's then that I realize that I'm sitting in front of an emergency room door "Oh no!". If you've read my blog on my last visit to the emergency room, you know this is the last place I want to be! In my head I'm panicking because I'd rather die than be left in some sound proof room lost for an hour, with medical personnel who know little or nothing about my disease! Now I'm still dizzy, my heart rate is 140, my head is foggy and I knew I wouldn't be able to say anything coherent for at least five more minutes. Now there are a few people standing around me, and I'm thinking this is bad. But I manage to tell the orderly that this is normal for me, please give me a few minutes. I'm left alone with this kind man who waits patiently by my side and after about 5 minutes I begin to feel a little better, my heart rate has dropped to 95. I tell the orderly thank you, and that I have dysautonomia, his response; "I've never heard of that before", I giggle and say "not many have". I slowly try to get up, and tell the orderly thank you. He asks me, "Are you sure you'll be OK?" I tell him "yes" and head for my doctors visit, because now I'm late!

By the time I get to my doctors office, I'm dizzy again with all the symptoms I just experienced in front of the emergency room. The nurse says "your late!" I shake my head in digust and try to sign myself in, but the page is blurry, the nurse shoves another paper in front of me and says you need to blah-blah-blah, I can't make out anything she has just said to me, I give her a confused look initial something she is pointing to, and plop myself into the nearest chair. I curl up, close my eyes and try to get myself back to normal. The nurse says something to me, and I don't respond and it's then that I guess she realized something is wrong. A minute later she is helping me into an examining room where they check my heart rate and blood pressure, which are both through the roof. The doctor comes in, and I remind her that these symptoms are normal and will probably get close to normal shortly. She asks what brought it on, and I explain about the long walk because of the parking situation, and she lets out a moan and explains that there is another parking lot around the corner with a shuttle service to this building. I giggle again, and she gives me a "she must be losing it" look", and gets on with my BFF issue. She can't figure out what's wrong with my BFF, and refers me back to my rheumatologist, so I'm back to square one again. The doctor has the nurse call for a shuttle, and the shuttle guy gives me a ride to my car. I explain what lot it's in, and he responds "oh no, I hope it hasn't been towed away, they're always towing cars from that lot!" I giggle again, because it figures. I get to the lot and woohoo, my car is still there, better yet, no ticket!. I thank the driver and head for home.

As I begin to ponder over my latest explerience I think maybe the humor thing might be the other way around, I'm sure God is putting me in these crazy situations to make me laugh! Who knows, maybe I'll write my own sitcom. Now for a title, Dysed and still laughing, or maybe the silly adventures of dysgirl. Hmmm I'll have to work on that.

Still inspired,
Dysgirl Michele

CyberVille to CreateVille

2010-07-08T08:59:00.000-07:00

I had been looking forward to summer break since about the beginning of June. I wasn't in a big hurry because I had one of the most amazing groups of students ever, and I knew this would be the last time I would have only 20 students in my classroom for a very long time. But the exhaustion from the end of the year activities and requirements for testing, cums, packing up and report cards had completely exhausted me. I'm still shocked I made it through my last week of school, I was so symptomatic and should have been in bed.

I had very few plans for the first week of vacation, I knew I needed to rest, and rest I did! I stayed in bed and read a good book, I spent time on Face Book making comments and posting status's. Things were going well until a sweet friend sent me a neighbor request for a new game on Face Book. I had made a decision to quit these games several months ago. I had decided to quit for two reasons. The first was keeping up with my farm was exhausting and required me to check it every day and this commitment was beginning to feel like work. The second came after a dear friend was leaving on a business trip and asked me to tend her farm while she was away. When she asked me I giggle and in my head thought "poor thing, she's worse off than I am!". The first day I harvested her crops that were ready on her farm, tended to her animals and harvested her fruit trees. After doing hers and mine, I was fatigued and feeling a little resentful (I was working at the time and very tired). The second day I finished harvesting her crops and I tended to her animals (I stopped harvesting the fruit tree, because nothing bad happens if you don't). On the third and final day I tended her chickens and that's all, I was done. I realised then that FarmVille had become a chore and I was no longer enjoying the activity, so I quit. I never felt the desire to return, and I began spending some of that time uplifting friends and connecting more with my family.

These games are so appealing, and you can tell this type of gaming is focused on woman. The characters are cute, they have big eyes and sweet smiles. The player gets to design their avatar choosing hair color and style, eye shape and color etc. The game begins with simple tasks and gives rewards for each task completed. Often times you are rewarded with coins so that you can purchase more items for your game, and bingo, you've been hooked. Being able to get more stuff is a natural human desire. The one with the most stuff wins! Then there are the collections, another opportunity to get more stuff, unique stuff! It's so appealing.

Now take someone like me with a chronic illness, who has been forced to give up on many physical activities such as gardening, hiking, socializing and Mall shopping, and these games look even more appealing. Take FrontierVille, in this game you get to chop trees, build a town, plant and harvest crops, clobber bears, snakes, foxes and gophers, clear land and tend to the cute farm animals (I liked the geese the best). I had a cute little family (little Bella and handsome Edward)who shared my farming tasks. We were the perfect little family, we worked together with smiles on our cute little faces, there was no complaining about doing chores and we all got along without any arguments! Now add the chance to help friends on their property and you have a game that allows you to do all the things you can't do or are too dangerous to do in your own life. For example, during my last week of work my friends were packing up their rooms because their assignments in the school had been changed. I so wanted to help them, but could barely survive my normal day. I felt so useless, frustrated and angry that I couldn't be there for them. These games allow you to help your friends with very little effort, and accomplish tasks without sending our bodies into physical chaos.

Now add our daily symptoms to the mix, fatigue, nausea, head ache, brain fog, irregular heat rate and blood pressure, pooling, swelling and pain and these games are so easy to love. You can just sit there on a bad day, and with little effort at least accomplish something when you can barely keep a glass of water down and walking to the bathroom may result in passing out.

I'm very goal oriented though and at first these games satisfied that part of me, but in the end I had nothing tangible to show for my time spent. I needed something to prove that I am accomplishing something during my day. The challenge was "what could I do with my time when I'm feeling sick?". This vacation from gaming had forced me to re-evaluate what I still can do during my free time. I did allot of scrap booking before my former husband left, I had stopped because the pain of going through family pictures had become emotionally unbearable. I had put my scrap booking material in the back of my closet and hadn't touched it in four years. The pain of my past is over, and it's time to get those books out and finish what I began many years ago. Once I set up a corner in my dining room with my scrap booking materials, scrap booking will take very little effort and there will be so much to show for my time spent doing it. The second thing I re-discovered was my love for making cards. It's another craft that allows me to be creative and takes very little physical effort. To top it off, I've decided to have a little card workshop at my home. Once a month I can enjoy my past time with my friends. There's nothing better than a group of friends getting together, making cards, laughing, sharing and then enjoy a nice lunch afterwards.

There's nothing wrong with computer gaming, we all need a little time to gel out in front of the computer. I just needed a little balance, I still get on my computer several times a day when I'm home. I check on friends and post my status, but I'm balancing my time with other activities when I'm home and not feeling well. It's giving me a sense of accomplishment for how I'm spending my day.

Still inspired,
Cracked POTS
Michele

You Look Sick

2010-07-01T14:57:00.000-07:00

I'm sure in teen circles the term "you look sick" would be considered a complement, but coming from my former husband, I interpret it to mean "God Michele, you look like death warmed over". To be honest, I'd prefer to be caught in a slammin'outfit, hair done and flawless make-up. Mainly because I would prefer that he left my home saying "Wow she looked good, maybe I should have never left." Now this is truly my own unrealistic fantasy within my twisted head, so please excuse my temporary delusional thinking.

Today was one of many typical POTSy days (nausea, dizziness, fatigue). So I'm in my sweatpants, old t-shirt, hair sticking out in every direction, no make-up and I'm an odd shade of green. I hear a knock on my door (I'm thinking it's probably a salesman and I'll scare them away with my green tint and a kind warning that I may puke any minute), I open the door and to my surprise it's my former husband. He takes one look at me, steps back and says "You look sick, is this one of your bad days? I nod, invite him in and we have a polite visit. As he's leaving he does tell me he's sorry that I'm feeling so bad, and heads to his truck. To give him some credit, I did get the feeling he felt badly for leaving me to deal with this illness alone. I now look at his decision to leave as a good one for both of us. I know I would be worse off if I had to deal with the stress of a one sided marriage.

How I appear to others has always held some importance to me (now I'm very average looking but enjoy trying to look my best). Having POTS has altered my thinking about appearance a bit. I still try hard to look my best, even if I feel awful. I don't know what I'd do without my liquid foundation, it can conceal just about anything! I use to get a bit upset when I was feeling very sick and people would complement me on how good I looked and that I didn't look sick at all. After someone would tell me I didn't look sick I'd have this secret internal dialogue shouting back at them, "can't you see I feel awful". I now take the sentence "you don't look sick" as a complement of the good job I'm doing to hide how awful I'm really feeling. Not looking sick takes the focus off being sick (which encompases just about every waking minute for me). It helps me focus on conversations about others and away from my illness.

I'm also learning that if someone catches me on a really bad day, and I look as sick as I feel, that that's ok too. This new comfort in appearance is extending to my obsession with having a neat and tidy house. If I'm not up to doing the dishes, and there's a stack of dishes on the counter when a friend comes over, who cares. I don't change my opinion of them if they have a few dishes on their counter, so why get all Susy home maker on myself. Life is too short to be so hard on myself.

Still inspired,
Michele

P.S. I sitll don't get why the former husband just drops by my house unannounced, and I've never once desired to go to his. He left me, so why does he keep coming back?

If You Give a Mouse a Cookie/ If You Give Michele a Disease

2010-06-21T09:10:00.000-07:00

One of my favorite books to read to my kindergartners is If You Give a Mouse a Cookie by Laura Numeroff. The book starts with a picture of an adorable mouse holding a chocolate chip cookie, with the words;"If you give a mouse a cookie, he will ask for some milk to go with it." In the story the child keeps giving the mouse what he asks for, only to be asked for something else. It's a very sweet story, and in the past I've always used this to describe the typical direction home renovation projects usually go. If you replace the bathtub, you'll want new fixtures to go with it, until in the end you have remodeled your entire bathroom.

Well it seems like my villain disease dysautonomia falls into the same category. If you give Michele dysautonomia she'll get EDS ( Ehlers Danlos Syndrom) to go along with it. Or how about one of the dozens of other syndromes that seem to like to tag along. Several months ago there was a posting on one of my favorite fb sites (Dysautonomia Awareness), "What else do you have?". The commonalities in diseases from a staggering number of those who shared were mind boggling! Here's a list of the ones that came up most often.

POTS-Postural Orthostatic Syndrome

NCS-Neurocardiogenic Syncope

EDS- Ehlers Danlos Syndrome

IBS-Irritable Bowel Syndrome

CFS-Chronic Fatigue Syndrome

Asthma

Raynauds

Migraines

Lupus

Fibromyalgia

Insomnia

Heart disease

Chiari

Hypothyroid
Arthritis

And a large number of digestive disorders.

I could easily place half of these on my list, though I have not been diagnosed with them. Why no diagnosis? I don't want to take anything else, I'm so super sensitive to medications, one more might throw me overboard. So I push through the popping hyper extended joints, stretchy skin, migraines, princess and the pea syndrome, arthritis pain, purple hands and toes just so I don't have to take one more pill.

Well my big fat foot brought me back to my doctors office. I lived with one swollen foot for three weeks, and wearing ugly shoes during those weeks was the last straw! I want my pretty shoes, I want my pretty shoes (as I lay on the floor kicking and screaming)! So I drag myself to the doctors office, and I'm sitting on the examination table. The head doctor comes in and takes one look at my foot and informs me that my foot is indeed swollen (wow, she's good). She asks about recent injuries, which I answer "none". Does it hurt, "sometimes". Length of time swollen, "three weeks then, now it's been five". She asks about medications, and I give her the list. She looks back at my feet which are now a lovely shade of purplish/black, she raises her eyebrows, and asks if this is normal? I smile and respond "yes". She looks through my lab results from my recent hospital visit and asks me what the hospital did for my low platelet count? My answer, "What low platelet count?". My doctor responds with, "they didn't do anything about this platelet count? Hmph!". She spends several minutes rechecking my chart, and starts running down a list of thing to watch for. As she goes down the list; head aches, dizziness, swelling, discoloration, shortness of breath and irregular heartbeat. I remind her that those are all symptoms I experience on a daily basis. She "hmph's" again, and says nothing for a few minutes, then says that if I feel worse than normal to call her immediately. Now in my head I'm thinking, how do I distinguish worse than normal. These things happen in at various degrees daily. She sends me to the lab, where they take 10 blood samples and after bandaging me up the nurse declares "oh... I forgot one, sorry." Grrr.... don't you just love those phlebotomists! After being stabbed by a needle for the second time, I schedule my next appointment for the following week as directed by my doctor, and head out the door. I then realize I have no idea what having a low platelet count means!

Now being curious and feeling the need to be informed, I head for home (with a side trip for some yummy Chinese food), to find out what having a low platelet count means. I get on my well used computer and head for Web MD. Before dysautonomia I had never heard of this sight before, but with all the disease tag-alongs from dysautonomia I go there to keep myself informed about drug side effects and my current medical issues. Now, this site isn't for the faint at heart! There should be a warning on this site in big RED letters, If you haven't been given a specific diagnosis stop here! They give you every medical possibility on your inquiry. The list for low platelet count included Lupus and Leukemia, AHHHHH! Calm down Michele, no one mentioned Leukemia on the list, get a grip!

So I went back to the doctors today. My platelet count is still dropping, she still doesn't know why, and she wants to run more bloodwork. And to top it off, she has no idea why my foot is swollen! I WANT TO WEAR PRETTY SHOES!!! Can't she just stick a pin in it and pop it, that should bring the swelling right down!

I'm much more at ease with it at this point, I know my autonomic system seems to continue to fail me in one way or another. I'm pretty sure dysautonomia is the culprit, and in the mean time, I'll just stay away from sharp objects for a while! If this turns out to be some new disease, I want to name it. I was thinking of something along the line of BFF syndrome (Big Fat Foot Syndrome), and who doesn't need a bff, that's what I'd like to know!

Still inspired,
Michele

Electric Cart/Bumper Car

2010-06-12T10:17:00.000-07:00

It's Saterday, and better yet, shopping day! I woke up this morning having a worse than normal POTSy morning. Being typical Michele, I decided to push through it (see previous blog), and take off for the market. As I get out of my car I'm feeling shaky, dizzy and tired. Now this should have been my cue to turn around and head for home and my very comfortable bed. But no....., being my typical stubborn self I decided to push through it. Though I'm not so stubborn that I didn't see the writing on the wall, and I did make what I believe to be a smart decision, and use the electric shopping cart in the store.

I picked the one closest to the door, got settled in and pushed forward. It won't go! There is no manual, I guess most people are brilliant enough to figure it out. After several minutes, and several tries, I get my cart to go. Immediately I felt I had made a mistake, I felt like I was moving in slow motion, this shopping cart was sooooooo slow! It was like energizer bunny meets Tommy turtle. In my head I'm screaming "I NEED SPEED!" When I'm in my car I like to drive fast, driving isn't a means to get from place to place, it's a race to see how fast I can get there. You've seen the likes of me before, I'm the one passing you on the road only to be stopped at the next stop light, but at least I got there first! So I'm lumbering down the first isle, and have to get up to reach the soda on the top shelf, and I'm thinking, "I hope all my items aren't on the top shelf, or I'm doomed!". The store I'm shopping at is going through a remodel, and they have decided to move everything around, the gingerale is no longer in the soda isle, and I'm screaming again, "who in corperate America decided to put gingerale in the nut isle?" Oh I know, only a nut would come up with that (sorry just venting). I get my gingerale, and head around the corner. I ended up going down an isle that I didn't need to go down, and my shopping cart dies! I look around, and see a young woman working at the end of the isle, and I call out to her, she doesn't respond, I think she's ignoring me, so I try again, this time I get her attention. I ask her if she can call someone to bring me a new cart, and she disappears. As I'm sitting there, I decide to try my cart again, and Bingo, the cart begins to move, again at a snails pace. I decide to drive myself to another cart to save the store workers the trouble. I pass by management, and explain what I'm attempting to do, and they send someone with me to help me switch carts.

Carts are switched and I'm on my way! This cart is way faster than the last one, woohoo the race is back on, until I crashed into the corner of a graham cracker display and knock over a half dozen boxes of crackers. And I'm thinking to myself, "well what do you expect, they're in my way, what else was I going to do, slow down and go around them?" I head for the place I left off, and find that two out of every three items are on a shelf that I can't reach grrr! I turn the corner and the bread isle is cluttered with bread racks that workers are unloading, and my speedy cart won't fit. I'm thinking again, " hmmmm, my cart would make a pretty decent bumper car, and I'm sure I could push those bread racks right out of my way!" But reality sets in, and I don't want to be banned from the store, so I stop my cart, get out, and walk down the isle and get the bread items I need, then head back to my cart. I'm out of breath, and could really use a couch at this moment, but I push forward. I need bananas, and try to get as close as possible. I stop in front of a dried fruit display and reach for the bananas, but the cart decides it really liked crashing into the graham cracker display and creeps forward and knocks over the dried fruit display, oh no! Now, the veggie guy and I are on pretty good terms, and when he heard his display tumble over he turns around to give the person who destroyed his display the evil eye! After he realizes it's me, he gives me the one eyebrow raised look, and heads in my direction. At this point I'm out of my cart trying to make things right for my favorite veggie guy! He asks "what's up?" and I explain about my rough morning and the need for the cart. He tells me he's surprised by my story, but he explains that the store usually doesn't allow demolition drivers to drive their electric shopping carts. I chuckle and apologize, and after all is picked up I head very carefully to finish my shopping. Because the store is not in it's usual order, I've forgotten a few things and head back to look for the items missing. My cart is overflowing, these carts are not meant for those with families. As I head around the corner, the eggs slip off the top of the cart, along with my bananas! I hang my head down with shame, and look for someone from the store to clean the mess I've just created. The young woman who went for help when I needed a new cart gives me a look and heads for the phone, next thing I hear is "clean up on isle 12". I get the items I've missed, including the eggs, and rest them on my lap, and head to the check out isle.

The store is really busy, so I unload the cart myself. By the time I'm done, I'm so dizzy, I can't see straight. I sit back in my cart a bit dazed, the cashier asks for my store club card, and I give her a blank stare. She asks again, and very shakily I hand her my card. I can only imagine what she must be thinking about me (intoxicated comes to mind). She completes the sale, hands me my receipt, and wishes me a good day. The bag boy asks if I need help out, and I tell him "no thank you", I believe I've caused enough trouble and head out the door.

I'm sure after I left the store management found a video clip of me and made a sign for the employees warning them not to allow me to use the electric cart again. It probably says something like "Warning this woman is dangerous and will destroy store property! Do not allow her to use an electric cart!"

Honestly I won't do that again, I'm more tired from that trip than the trips when I push my own cart. Needless to say, the next time I will know better than to go shopping without enough spoons to push my own cart.

Still inspired,
Michele

The Push!

2010-06-09T07:09:00.000-07:00

The push, not to be confused with La Push (the native American village in which a very gorgeous Jacob resides)! Anyone with a chronic disorder knows what "the push" is, it's pushing your body to it's very limits, sometimes just to do a simple task. We all do it, and many of us pay for it later. To not do the task would be giving up or giving in. It would be the same as a prize fighter quiting a fight before he even started just because he might lose! For me, doing the task is part of living, to give up is to stop living.

I recently had a crash (severe symptomatic episode) at church. I knew I wouldn't be able to make it up the stairs to help lead a small group, so I had asked a friend to let the other leader know I wouldn't be able to make it. Well this lead to a well meaning friend taking over some basic decisions for me. I knew I needed to go home and rest, but next thing I know I'm being told I should use my wheelchair. Now I'm more than willing to use my chair if the episode is really bad, but that day I just couldn't make it up stairs. I knew that I could make it back to my car, but most likely at a very slow pace. I was told that not using my chair was an issue of pride, and that I should get over my pride issue and use the chair. Again, I know my friends intentions were only to look out for my best interest, but guilt and shame only made me feel worse. Next I'm being told that someone would be driving me home, now I'm on the fence on that one. At the time I felt up to driving, but if I had walked to my car maybe I would have needed a ride home. But the options were taken from me. Coming from a family with a handicapped family member, I learned very early that you don't just help the handicapped, you give them the option, for example; asking"can I open the door for you?", instead of just opening the door. I just want my options. Now if I'm not responding coherently to your questions, please make the decisions for me, in fact you might want to call 911.

Well, this well meaning friend brought me home. Next thing I know we're discussing my work options! I had shared that work leaves me exhausted in the evenings and weekends, but the joy of teaching is so worth it! I shared that if I had to quit it would be like a death sentence to me. Being isolated in the evenings and on the weekends if tough enough, I can't imagine living like that 24/7. I know many of you are living this reality, and I know many of you are doing some amazing things with the time you're given, I'm just not ready for that yet! I was told that that may be where my life is heading and that I should face that reality. I FACE THAT REALITY EVERY DAY! I know it's a possibility, but as long as I can work, I will work and pay the price for it, it's worth it! When I'm at work I feel so much better than when I'm at home, I think I'm getting spoons from my students, and that's how I'm surviving.

I guess the purpose of this blog is to let those who have people with chronic illness in their lives, to be sensitive to their wants and needs, and to ask them if they need help. And if you are suffering from a chronic illness, don't be afraid to ask for what you need, and to be OK to decline if you don't need the help. I believe that letting others make decisions for you gives them free reign to always make decisions for you. Positive boundaries are a good thing, it gives me some sense of control in my life, even though I suffer with a disease that leaves me feeling like I have very little control.

I hope you understand that I do feel very fortunate to have so many amazing people who care about me and want what's best for me in my life. I know these friends only have the best of intentions, but sometimes we're the only ones who know what we truly need. For many of us "the push" is worth it.

Always inspired,
Michele

How does God want to use this battered body

2010-05-30T19:00:00.000-07:00

I was writing to a friend on facebook, and learned so much through the writing of this letter, that I thought I would share it.

Hi my friend,
It sounds like we're in the same quandary. I've been really struggling with how God is going to use this battered body of mine. I feel so useless. Before POTS I was very involved in ministry at my church. I was a leader in a recovery group, and had my fingers entwined in it daily, along with the usual community and church activities. Much of the recovery ministry involved making phone calls (I sponsored woman with eating disorders and co-dependency issues), and leading small groups and also going to churches and sharing my testimony. I can barely hold the phone to my ear for more than 5 minutes, and now I can't stand and speak in front of people, the adrenaline rush use to be a good thing, now I get so symptomatic I can't finish my testimony, which is not good for this type or ministry. I've thought about using the speaker phone to ease the phone issue, but I can't put the woman I sponsor on speaker phone because of confidentiality issues, so needless to say, I'm not able to take my usual part in that ministry. Community projects are also difficult as you may know, not knowing how I'm going to feel and not knowing what the weather is going to be like can be a challenge. The church usually has sign ups for those various activities, but how can I sign up when I don't know how I'm going to feel on any given day. There's seems to be a medical reason for not participating in just about every ministry opportunity out there.

I have never been one to sit well, and at first I thought God was calling me to rest. Resting in Him is a very good thing (I had a bible study on Resting in Him just before I became very ill with POTS, and knew that God does call on us to rest). Before my POTS diagnosis I had been so busy serving I had exhausted myself. I thought God had called me to rest and be served. It's been 2 years, and I'm beginning to wonder if I may be wrong in thinking resting is what God wants for me, there has to be something more to this life than resting! But again I'm using my timing and my understanding, not His. Sarah had to wait till she was very old before she could finally bare a child, and she wasn't the best example of waiting patiently, but God fulfilled His promise to her, and her son became the father of a nation. It's in our nature to want everything now. I know this is difficult, I'm sitting there with you. Maybe God has called us to minister to each other, to comfort and encourage one another. God never meant for us to be alone or isolated. Maybe this is our ministry for now. On the bright side, the other day you acknowledged something I had said, and at the time I was feeling so invisible, you gave me the encouragement I needed to realize I'm not alone and I'm alive for a reason. You never know how just something small may be a lifeline to someone struggling. Keep being the amazing woman God made you, keep praying that you are obedient to His will, and listen to that whisper of God answering your prayers, God loves us so much, and only wants the best for us.

Always inspired,
Michele

Before I wrote this letter I was playing a computer game, in my head I told myself I need to write to my facebook friend who is struggling with the same issues of not feeling useful to God, in my head I figured I would write when I was finished playing, but the answer I got, was get off this game and write to your friend now. I'm thankful God doesn't hit me over the head every time I want my way. I wrote to my friend, and received many of the answers I have been searching for. I had begun considering my computer as a place of prayer, since I spend much of my time praying for those in need, I thought that was my ministry, but I wanted more. Encouraging one another becomes the social connection I believe I was missing.
James 5:16
Therefore confess your sins to each other and pray for each other so that you may be healed.

Couch potato

2010-05-30T16:22:00.000-07:00

This blog is dedicated to all those couch potatoes out there. I don't believe any of us with POTS wanted or chose this lifestyle, it was kind of placed on our plates and I for one have begrudgingly accepted what I've been served. I don't believe a single person with chronic illness wakes up in the morning and says, hey looking forward to nausea, dizziness and fatigue today, I can't wait to lay around in bed all day. I can't remember a day before my diagnosis with POTS that I spent a single day in bed unless I was very ill. I truly feel less than a couch potato, more like a potato skin. I feel like I'm empty, potato less, purposeless and empty.

The past two weeks I've been struggling with the emotional side effects of this disease. Being chronically ill has put me on self preservation mode. I have a tendency to experience a negative symptom from an activity, and then that activity is crossed off the list, never to be tried again. Well, before I knew it, almost everything I like or want to do has been crossed off the list. I'm doing very little, and have begun to become quite lethargic with my life. Here's a small sample of the things I have crossed off the list:

Concerts: The loudness of the music causes an adrenaline rush, which then triggers brachycardia, shortness of breath and dizziness.

Shopping: Unless I can find someone to go with me to push my wheelchair, I can't walk for long periods of time.

Outdoor activities: If the temperature is over 75 degrees, I'll pass out.

Night activities: I'm usually too pooped after 8:00

The list could go on, but I'm sure you get the gist of it. I'm beginning to come up with reasons not to do things I haven't tried yet, because I'm sure it will trigger some POTS symptom. To be honest part of me doesn't want to find out that I can't do this new thing either. Just one more thing to put on my can't do list. I'm very aware that I have allowed this disease to imprison me.

I became very aware of my lethargic behavior yesterday. I was playing computer games, recovering from my trip to the grocery store. My family was coming and going to different activities. Being Memorial day weekend many of my friends have special plans. I began feeling sorry for myself, oh poor me, I can't go anywhere or do anything. This disease is stealing my life from me, boo-hoo-hoo. I want to go to the beach, listen to the ocean calm my soul, see God's handiwork and feel the sand between my toes. I had a list for not going; the walk from the parking lot to the shore will poop me out, it might be too warm, I probably should go with someone, what if I become symptomatic and I'm by myself, my POTS symptoms will probably get in the way of my enjoyment, blah, blah, blah! Excuse after excuse. At that moment I lost it a bit, I decided to go to the beach by myself. Who cares if something happens, at least I'll be doing something I love. What I discovered was that I needed that beach trip to knock some sense in me, to at least try to do the things I love, and if I become symptomatic, so be it. Better to try something and MAYBE fail, than to not try at all. I'm not saying my trip to the beach was symptom free, brachycardia, nausea and dizziness were definitely there, but I would have experienced those symptoms at home. I went to the beach, I had a good time, and I survived! I was so afraid of becoming symptomatic, that I stopped living my life at all. I'm going to feel nauseous, dizzy, fatigued, tired and short of breath at home anyway, why not do the things I love feeling yucky. As Nike says, "Just do it!"

Still inspired,

Michele

Random Facts

2010-05-22T16:20:00.000-07:00

Well I've recently been awarded the Sugar Doll Award from two of my favorite bloggers, Michelle bobisdysautonomia.blogspot.com and Miranda mirandapowell.blogspot.com, I am truly honored to be recognized by two such brave and talented woman. Upon receiving this acknowledgement I'm suppose to write 10 random facts about myself in order for my readers to get to know me a little more personally. Or maybe understand the madness behind the writing.

Fact one: Those of you who have been reading my blog since the beginning know I love clothes, and love to shop. I may take my love of clothing a bit to far, I even worry about whether my pajamas match. It's a good thing that the panties labeled with the days on them aren't still popular, I would never be caught wearing Sunday's underwear on Friday (what would people think?). I wasn't always so fashion conscious in my youth though. My favorite Summertime outfits consisted of matching terry cloth shorts and shirts. For some strange reason I thought the shorts looked much better pulled all the way up to my armpits. Now I will give myself some credit, I was a beanpole, and I guess I thought if I pulled them up to my armpits, it would take them longer to slip down over my nonexistent butt!

Fact two: I didn't always want to be a teacher, in fact I hated playing school as a child, it meant I would have to write, which I hated doing (funny how things change). My big dream was to be an airline stewardess. Traveling to distant lands, romances with strangers, flying period was the ultimate high. My mom had a brilliant plan to help me with this glamorous career choice. When I graduated from high school she was going to send me to Germany to attend a Frauschule (which is a school back in the day, that teaches young woman how to be good housewives). That sounds so archaic now, I can't believe I was on board with this idea, I guess I'd do anything for my dream job (which I now believe is just a glamorized waitress). The purpose of this was that I would become fluent in German so that I could apply for a job at Lufthansa.

Fact three: My thoughts on marriage were quite unique. My big dream when I was in college was to marry a pastor. Being a pastors wife sounded amazing with me. I thought I would be perfect, I loved my God and His church. I loved to serve, I'm a pretty good cook for the many potlucks I'd be going to, being there to support my pastor husband while he supported his congregation sounded amazing. I didn't realize what a sacrificial life a wife of a pastor has, I'm glad God didn't grant that prayer, though it still sounds pretty cool. I did end up getting married, but he probably is the complete opposite to a pastor as you can get. For some silly reason I followed my hormones and not my smart brain. Though my marriage did last 23 years, 23 years of love, pain and deep suffering.

Fact four: My music choices are almost as random as I am. As a preteen and young teen I loved the Partridge Family. I swooned every time I heard David Cassidy sing "I think I love you". I liked BTO, Peter Frampton and Pink Floyd. But I have to admit I really, really loved the Go-go's, trying to dress like them, sing like them (I had a unrealistic biased opinion of my singing talents), I just wanted to be a Go-go! As a grown up, I mostly listen to pop Christian music.

Fact Five: I love to dance, though I have no talent for it. In my college years disco was quite popular, I would spend great quantities of time practicing my dance moves with my two best friends Bruce and Victor! We would take turns partnering like John Travolta and Karen Gorney, and then trying to do the hustle until we fell on the floor exhausted. Later in life, being a parent of teens, I would walk by their bedrooms and their music would wake up the inner dance diva in me, and my uncontrollable urge to dance would take over and I'd allow the dance diva to do her thing. Unfortunately my daughter considered my dancing entertaining in a not-so-complementary way, and my son would slam his door in utter embarrassment. Lucky for them the dance diva in me only comes out on rare occasions.

Fact six: I taste and smell color, the technical term is synethesia. I can see color when I'm eating food, and the color of the same food can change for many reasons. For example, a red delicious apple tastes yellow/brown, but the color I taste would depend on it's ripeness and variety. I discovered I had this special talent when a friend offered me some avocados from her tree, and I turned her down because they tasted brown. She asked me what I meant by tasting brown, and I told her that when I taste avocados I see brown when I eat them. She asked if other foods tasted like other colors and I said yes. It was then that I realized that everyone didn't tasted food in color.

Fact seven: I have had several dreams (maybe nightmares would be a better description) come true. I dream of people getting into accidents or being injured at work and that day the person I dreamed about has been injured in the exact same way as I dreamed. Often I haven't seen or thought of these people in years. It doesn't happen often, but I often question the validity of my dream until after reality has struck.

Fact eight: If I had unlimited time, energy and financial resources, I would go back to school and become a doctor. I have always had this inner sense of how my body works, what's wrong with me, and where the problems are. I would love to study and do on research myself, to get a deeper understanding of dysautonomia and how to cure it.

Fact nine: I was on a float once in a local parade. I wasn't chosen for any special beauty or talent, I was there because my precious little sister has cerebral palsy and they wanted her on the Elks club float. The Elks were sponsoring my sister, they paid for her crutches and anything else she needed that insurance didn't cover. The Elks club is filled with many kind and considerate men and woman who truly want to help those in need.

Fact ten: I'm really quite boring, and I can't think of any more random facts.

It's time to pass the baton or Sugar Doll award, and the Sugar doll award goes to (drum roll please) Laura Dysauto for her blog
The POTS ran away with my SPOONS. She shares her personal experiences with dysautonomia in a way that is easy to relate to.

Always inspired,
Michele

The Fishbowl

2010-05-01T13:14:00.000-07:00

I'm sure many of you remember that first fish you won at a local carnival. I remember my first fish very well, I was eleven and at the carnival with a few of my girlfriends. I remember the booth with all the fishbowls with fish in them in the middle of the booth. To win a fish all you had to do was hand the man a dollar and he gave you 3 ping-pong balls. It was your job to throw the ping-pong ball and make it land into a bowl. Sounds pretty easy until you try it. Usually the ball hits the side of a bowl and lands on the floor somewhere. I remember it only took me three dollars to win my beloved fish (what a money maker for the carnies, they probably got 100 fish for a dollar). Now that I have my fish, I push my brain to come up with a creative name, and name her Goldie (wow, that was a push LOL). I begin carrying Goldie around the carnival grounds, and realize I'm unable to go on any more rides for fear of jeopardizing Goldie's life (she's already become a burden within an hour), so I take off for the cotton candy machine and head for home. When I get home I realize I don't have a bowl for Goldie, and am thankful I didn't spend all my carnival money. I take off to the corner fish store, and four dollars later I have a bowl, some rocks and some fish food for Goldie.

The first week, Goldie's is living it up at my house, she has a clean bowl, she's fed every day , and I talk to her whenever I'm in my room. Week two, Goldie is fed every day, I rarely say a word to her, and she's lucky if her bowl is cleaned once a week. Week three, I think maybe if I feed her less she won't poop so much, and her bowl won't need to be cleaned as much. Week four and a half, I wake up and think "what's that smell?", I look around the room, and notice Goldie's bowl is a greenish brown, and I can barely see Goldie and she's struggling to breath. I quickly clean the bowl, feel slightly guilty for not caring for my fish, and do a little better for a couple of days. By week five, the bowl is stinky and brown, and I'm thinking to myself, DIE Goldie, DIE! Finally after several weeks of abuse, Goldie goes to the big ocean in the sky via my toilet.

Lately I've given some thought to my poor goldfish's life, and thinking I might be reaping what I have sown when it comes to my treatment of Goldie. Lately I've been feeling like a fish in a bowl, watching the world around me living and going on with life.

Recently I went on my typical trip to the grocery store, and as normal, by the time I was done, I was exhausted. Behind me was a sweet elderly woman with a cane. My heart went out to a fellow sufferer of a body that was no longer working at 100%. By the time I was done unloading my cart, my body was finished. I knew I would barely have the energy to walk out of that store and load my twelve bags of groceries into my car. I slowly walk around to the side of my car, when I see the sweet lady with the cane walking to her car. She opens her trunk and gingerly unloads her cart, and is backing quickly out of her parking spot and driving down the street. I guess she had me fooled, I'm sure she could have taken me down with a gentle push of her cane. I finish loading my car, and drag myself to the driver seat, close the door, close my eyes, and try to will my heartbeat to slow down, to ease my gasping for air, to stop the world from spinning, and pray that I have the strength to be able to place my hands on the steering wheel so that I will be able to drive myself home before my frozen goods begin to melt. As my heart slows down and my breathing eases up, I slowly open my eyes trying to focus on the people and things outside my car windshield. As I sat there watching, I realized that the world around me was alive and busy. People coming and going without a clue that I was sitting in my car barely able to function. I felt so separate, and almost not a part of this world around me.

It's the same for me at home, I watch my children come and go, watch the people outside walking the neighborhood, hear about the things people do on the weekends, read about the fun things people are doing on face book, and feel like that fish in the bowl, seeing but not being a part of it.

At church, I watch the people come and go, catching up and sharing, but I can no longer participate in church activities so I've lost the connection, it's work for me to go from person to person. I now feel like a stranger to these friends I use to know so many precious details of their lives. I feel like I must sound like a broken record to them, my life is the same, I'm still sick, I still am blessed to work, and I still have an amazing family. When I do get the chance to talk to someone, I ask about how they are doing , but I seem to be getting a pat answer from many, I'm sure I must be doing something to get the quick answers, probably the fact that I'm not there and not connected.

Now I'm sure some of you are thinking jump out of the bowl and get out there and live. I guess part of the problem with that is fear, there are so many things that can trigger a crash of my symptoms that I don't want to pay for it later. I'm also so tired on the weekends after working all week, that I have practically no energy to expend on extra curricular activities. It feels like the last hospital visit took more than a few days and a chunk of change, it feels like a part of me was left in that lost and found room they left me in. I know I need to work harder at telling others what I need, but I just don't have the energy to do that. Part of me is becoming compliant to this life of solitude, but the other part of me screams for my old life, my busy others filled life. I wish this blog could be more inspiring for those who struggle with the same problem, but I haven't found the answer to this one yet, when I do, I'm sure to blog about it.

Desiring to inspire,
Michele

Mystery Rooms of the ER

2010-04-26T21:21:00.000-07:00

I had no idea the hospital had secret rooms to place patients in when they didn't know what to do with them. If you're unfortunate enough to be placed in one of these rooms, you may be untraceable for unknown periods of time, and no-one can hear you scream (scary laugh, ha-ha-ha-ha).

For those of you with POTS, several thoughts go through your mind as you are heading to the ER: I'm scared because my POTS symptoms are out of control, do I have my list of medications & doctors, will the staff know what to do once I get there, and finally will anyone there know what POTS or dysautonomia is?

My POTS symptoms were out of control, and my doctor couldn't see me or talk to me, so the decision was made to go to the ER, which is the last place on earth I'd choose to spend a nice sunny afternoon. I arrive at the ER entrance, where a greeter quickly swoops me up in my wheelchair (I begin to think this might be the beginning of a positive ER trip)and he drops me off alone in the admitting line (well maybe not). The admissions personal ask "Why are you here?", and wheezing from being out of breath I try to tell them "tachycardia, shortness of breath blah, blah, blah.", they give me a confused look and ask "What was that again?" I bow my head in defeat, take a few more breaths and try again. They finally get it, with a reply of NAME?... I don't have the energy or the oxygen to give her my name, so I hand her my ID. She calls a nurse over, and the nurse quickly wheels me over to a space in the triage area recently set up in the usually full waiting room. The nurse takes my pulse and blood pressure, my bp is skyrocketing, and my heart rate is dropping. I tell her I have dysautonomia, and she responds "You have what?", I try to explain, but I can no longer speak so the nurse decides I need an EKG, and wheels me to the EKG room.

Now for a little of my Er's history. Spending many hours there, with my type 1 diabetic daughter, I know the place rather well. We're on a first name basis with many of the nurses on staff. But on Tuesday they made a few changes, the ER waiting room was split in half, half remained waiting room and the other half became a triage area. The room they call the EKG room was the sound proof room they brought families into if they had to deliver bad news. I was later told that the triage center was less than a week old!

The nurse rolls me into the EKG room (formerly soundproof bad news room), I lay down on a gurney, the nurse rolls my wheelchair to the far corner of the room (so there's no way possible for me to escape, creepy laugh ha-ha-ha-ha), she tells me the EKG tech will be in soon, and leaves me alone in the room! As I'm laying there I'm experiencing chest pains, I'm dizzy from being short of breath, my head feels like it's about to explode, and I'm overcome with nausea, and no-one in this condition should be left alone in a room for any amount of time! I wait, and wait, and wait, and no EKG tech! After quite a long time the nurse comes back, peeks her head in, and quickly asks if I have had my EKG, I barely said no, and she was out the door. So again, wait, wait, wait, finally after almost an hour the EKG tech comes in looking for Michael Miguel. I tell him I'm the only one in the room, (now remember I'm experiencing brain fog, so my brain is running a bit slow) tick, tick, tick, oh I scream, are you looking for Michele McGough? Bingo, we have a match. EKG tech tells me he's been looking for me for over a 1/2 hour, and runs my EKG, he wheels me out of the room, where my name is being called out, I call "here", and the nurse asks me "where have you been, I have been looking for you for over a 1/2 an hour!, didn't you hear the pages?", "um, well no, I've been in the EKG room.", "the what?" the nurse replies, "THE EKG ROOM!" which only comes out as a whisper (but I am beginning to find humor in this). She rolls me to the registration desk, and informs me that she has a few questions for me, and I ask for my daughter, because I know I don't have the energy or oxygen to answer her questions. She goes to the waiting room where my daughter comes in a bit frazzled and ask "where have you been we've been looking for you for over a 1/2 hour!" I begin to giggle and my daughter gives me that knowing look of "you've got a story to tell", but we both want to get things going so my daughter asks what they need to know (I don't know what I would do without my precious daughter!). With the registration process over, a nurse comes in and tells me "I have been looking for you for over a 1/2 hour to take your blood and run an x-ray", with a smile I tell her "they left me alone in the EKG room for over an hour." she apologizes and tells me the triage area has only been running for less than a week, she takes my blood, and wheels me over to the x-ray department. While waiting we hear a woman screaming (in my head I'm thinking she just got some really bad news and I begin to pray), then we see 6 security guards running to a room where we heard the screaming, a few minutes later a social worker tells us that the woman was high on drugs and was bi-polar, wow, I got that one wrong! The x-ray tech comes out and informs me that she has been waiting for me for over a 1/2 hour, I chuckle and tell her that the hospital misplaced me, and she gives me a look like I'm a bit off my rocker (she obviously doesn't get the humor), not wanting her to call the six security guards on me, I put on my serious face and explain that I was in the EKG room, "the what room?". I'm getting a bit tired of explaining, so I redirect her to the task at hand. X-ray done, the nurse fetches me, I'm thinking finally I'm going to be placed in a room!

Psych! I'm wheeled into a small waiting room in the far corner of the hospital, with three other tired and distressed looking patients and their families. I announce to my daughter, "oh... this must be the lost and found room!", and the whole room erupts in laughter. I guess they must have been misplaced as well. We realize this is the transitional waiting room. As each patient is called out of the room we cheer them on and give them well wishes. Finally it's my turn, and I'm wheeled off to a room, woohoo!

I'm sharing a room with another patient, and I'm hooked up to various monitors, and asked "what brings you to the ER?" and I'm thinking isn't that in a chart somewhere? I tell him the same thing I've told a half a dozen other nurses, and the nurse says "you have what?" I answer, "dysautonomia", "could you spell that, never heard of it". Off he goes not to return, I guess I scared him off. He finally returns and announces his shift is up and someone will be replacing him shortly. It's been hours, I need to pee, I haven't had anything to drink, and no-one has checked on me in a while. I see a passing employee, and ask them to find my nurse, and she announces briskly that she is my nurse! Well that was the last straw, I tell her what I need, she tells me she can't give me any water or fluids until a doctor approves it, I tell her I've been there for four hours with no water, which will make my condition worse, and she tells me there is nothing she can do, and a few hours without water isn't going to hurt me a bit. I ask to use the restroom, and to bring me a supervisor. The supervisor finally comes, I tell her about the EKG room, and the long wait, and lack of supervision, she apologizes, gives me excuses and leaves. A few minutes later my daughter and the family next to us are offered snacks and drinks (I guess she thinks a little food will make us forget about the terrible treatment), and the nurse becomes more attentive, hmmm... I wonder why?

After five hours of waiting a doctor finally comes in and asks, "Why did you come to the ER today?", I responded, "Didn't you look at my chart when you came in, I can barely breath, and I don't want to explain it again." He informs me that he did look at my chart, and I ask him if he knows what dysautonomia or POTS is, he tells me no, I demonstrate to him how my bp and heart rate change by positional changes. He looks a bit startled, and by then I'm gasping for breath, and I'm finally given oxygen. I ask him to call my neurologist, he agrees, and leaves. I'm left waiting for another hour, and when the doctor comes back he announces that my neurologist wants to admit me. Two hours later I'm settled in my room where a new medical nightmare awaits!

Still inspired,
(but not by the ER department)
Michele

Spiderman has nothing like this!

2010-04-21T07:02:00.000-07:00

Spiderman, Superman, and the Hulk live life as average guys. Men you may or may not look twice at if they passed you in the street. But when danger confronts them, they quickly transform into superheros. The Hulk ripping through his rather thin tank, Spiderman pulling open his shirt to expose his spidy suit and Superman transforming discretely in the privacy of a phone booth. All three looking bigger than life and completely capable of facing any danger in front of them.

Well I have a little secret, I transform into something that's not quite a superhero, but feels super something. I call myself DysedGal. I too look like your average gal walking down the street, maybe slower than most, but surely pretty average looking. My super transformation doesn't need villains or catastrophes. It comes on quite suddenly and I'm sure if I were a real superhero, the transformation would feel identical.

I can feel the change begin slowly through my body like a gentle stream tingling slowly down each limb to my fingertips and toes. As I feel the tingling moving through my body, I can feel the strength leaving me like the sand on the shore being gently carried away to the ocean depths. My heart begins to pump erratically so hard and fast that it possibly could pound its way through my chest. My breath seams to quicken trying to catch up with my beating heart. My head becomes fuzzy, no longer able to produce a coherent thought, not even the ones that would protect my body or help alleviate the symptoms.

The transformation complete, but no superhero has been produced, just a super weak, tired, frightened body that can barely move a limb. I've been Dysed! After the symptoms that feel like I should be transforming into something amazing, I'm left weaker than I started off, not fair! DysedGal is not a fair exchange. Where's my cool superhero suit, I want to fly, to leap tall buildings in a single bound. Where are my bulging muscles, or maybe a few curvaceous curves in just the right places! What about my x-ray vision (blurry eyesight doesn't count). And while I'm at it, those superheros always get the cute girl, where's my super hot manly man? I think I deserve my fair share of superpowers!

Hmmmm..no superhero, oh well, I only mention it because the feeling is so strong and so inhuman. It only takes a few seconds to go from semi-normal to a bowl of mush. I often refer to myself as a vampire because the changes often are connected with sun and heat, and it does feel like a chemical change is happening, a bubbling or simmering, it is so bazaar. Well I guess the closest I get to a superhero is my TV and my DVD player.

Maybe I'm not meant to be the rescuer, I just need to depend on the only one who can rescue me from myself! I've never made a single POTS transformation alone, I'm truly thankful to have God on my side through all this.

DysedGal signing out!

Spa Treatment

2010-04-09T08:06:00.000-07:00

The sun is shining, the birds are singing and the signs of Spring are all around me. It's one of my favorite times of the year. It's time to add to my Spring wardrobe, pull out my shorts, and skirts, and get out my strappy sandals. I look down at my feet and realize my feet have been ignored for nearly six months! If it weren't for the occasional clipping to keep my toenails from pocking holes through my socks and stockings, my nails would easily resemble my dog Elmo's (curved and scratching the floor as I walk). It's time to head to my favorite nail salon for a pedicure.

I'm totally prepared for my spa experience, a good book, my ipod, chai latte tea and some salty snacks. I can't wait! As I'm walking into the salon, it's obvious to anyone looking my way that I am armed and ready for a relaxing morning at the spa.

I'm immediately greeted by the salon manager and instructed to pick out my nail color as she fills the spa tub. I pick a hot pink to go with my cheerful mood and sit in my chair. The salon manager adjusts my chair as I'm beginning to relax, and poof, she pushes the massage button on the chair and these huge massage balls begin shaking and rolling down my back. I am so startled that I jump and my book flies into the tub. Every eye in the spa is now staring at me as the manager tries to save my book, which is now soaking wet at the bottom of the tub. We decide the book has been read for the last time and it's tossed into the trash. The sweet manager hands me a magazine and informs me that my tub is ready. I slowly ease my feet into the steaming tub only to quickly pull them out because the tub is so hot it could only be used to poach eggs! The manager kindly cools the tub, and I give it another try, ummmm just right!

Finally, I can relax, chai in my hand, my favorite music gently uplifting my spirits and a fashion magazine listing the top 5 must haves for my spring wardrobe! I'm in heaven. It couldn't have been but a few minutes into my heavenly bliss when I noticed a throbbing in my feet and toes, I look down and notice my feet have turned a lovely shade of purple! Reality sinks back in and so does the dysautonomia symptoms. I pull my feet out of the tub and rest them on the edge. My pedicure lady comes and asks if there is something wrong with the water temperature, I just explain that my feet needed a break. She gives me an odd look and lets me know that my feet need a good soaking before she can start. I nod and reluctantly return my feet into the tub. After a few more agonizing minutes of soaking, my pedicure lady rescues my feet from the tub of doom. As she pulls my foot from the soaking tub her eyes pop open in surprise, and she informs me that my foot is purple! I giggle and tell her that is normal for me, she shakes her head and moves on to the pedicure.

The pedicure begins, and so does my motivation to try to relax again. I'm enjoying the skin care section of the magazine, when suddenly my feet inform me that they are under attack by the pedi lady sawing the bottom of my feet with a sander! My body begins to tense up as I try to endure this painful experience, and my pedicurist blissfully continues the sanding process. As she sands away, I have grabbed the arm rests of my chair in the same way that I do when I'm at the dentists office and I'm getting my tooth drilled. The lady in the next chair is eyeing me as if I'm crazy to not be enjoying this relaxing experience, and I start to feel like a failure at something as simple as relaxing. As I look around the salon I envy those woman resting peacefully as they are getting the full spa experience, and I chuckle to myself as I realize I am the only one tenser than a cat in a room full of rocking chairs. I then begin to give myself a pep talk to try to endure the torture for just one more minute! I'm no longer able to take the discomfort, and I pull my foot away, and the pedicurist laughs and says "does that tickle?" (ARE YOU KIDDING ME?), I frown and gently tell her that she's hurting me, so she stops and begins on my other foot. My body is just starting to relax again as she meticulously works on beautifying my other foot. Then my foot is being tortured by the sander again, and I pull my foot away. Again I try to explain that the sanding hurts the bottom of my foot, and she stops, frowns and places my foot back in the tub. She then begins working on my toes, and tells me my toenails are really soft, I again re-assure her that this is normal for me, and she continues.

It's time for the massage part of the pedicure experience. My pedi lady begins rubbing on the lotion and asks me about the bruises on my legs, and again I inform her that it's normal for me and not to worry. I'm beginning to think maybe this woman should be a doctor instead of a pedicurist, she's much more observant than my doctor is. She begins to rub in the lotion on my legs, and starts kneading my calves with her tiny fingers, and they feel as if they are being attacked by tiny paint ball pellets. The pain of the massage is more than I can handle, so I kindly ask her to please stop. I don't give her much of an explanation because there is a language barrier and I didn't think she would understand me (just so you know, my mom is German and didn't speak English when I was a child, and I totally respect those who come from other countries and try hard to learn our language, it's a challenging process and they have one language up on me, but the truth is it's still a bit difficult to communicate). By this time the manager is looking my way and begins shouting in Korean at my pedicurist. They argue back and forth for several minutes and finally the manager begins speaking to me. She is wondering what my pedicure lady is doing wrong! At this point the stress of this experience has finally come to a breaking point and I begin to laugh hysterically. Again all eyes in the salon are staring at me, and I don't care. After a few minutes I calm down, wipe away the tears of laughter rolling down my cheeks, and inform the manager of my dysautonomia and the symptoms that go with it. She finally nods in understanding, and begins translating our conversation to my pedicurist in Korean. When they are finished talking the pedicurist gives me a compassionate smile and begins painting my toenails.

I left the spa that day with hot pink nails with butterflies painted on them, and the need for a nap. Who would of thought that a trip to the spa would be so exhausting. I also learned a valuable lesson that day. I could have easily walked away from that experience deciding to never return again, but dysautonomia would have just took another fun experience away from me. I've learned to not be afraid to ask for what I need. I also need to allow for a bad first experience, so that I will have the opportunity to learn from that experience, and then know what I will need for the next time. Be strong, be persistent, and don't forget to laugh, life is too short to wallow in the negative.

Always inspired,
Michele

Insurance & Peace of mind...NOT!

2010-04-06T08:00:00.000-07:00

My father use to tell me that "insurance gives a person peace of mind". Well, that was 20 years ago, and I don't believe the insurance companies are using that motto in their training sessions with their employees any more. I believe the new motto for insurance companies is "Insurance is a circus act". In my opinion insurance companies train their personnel to see how many hoops they can make a customer jump through to get the treatment he or she needs before they actually authorize treatment. I can imagine each customer service representative (CSR to save time) given a list of hoops, and after all hoops are achieved, the CSR is told to tell the customer that they didn't receive the faxed copies of hoop "X", please try again. I've also noticed that these CSR's seem fairly cheerful on the phone, but I guess I'd be happy too if I got paid to get nothing accomplished all day!

You may be wondering why I chose this topic to write about, well....yesterday was the day I gave myself to finally try to get the wheelchair my physician recommended for me 6 months ago. If you have read my past blogs you know that I have been procrastinating this task for emotional reasons, but I know having a wheelchair will improve my quality of life so I decided to push forward with it this week.

Yesterday morning I began the task. I grabbed my prescription for the wheelchair and made a call to the insurance company. I should have known there would be trouble when I heard the recording on the insurance companies intro message; "Please listen carefully, our options have recently changed, please choose from the following new options". Choosing an option is always a gamble because if you have chosen the wrong option, you have to hang up and start the process all over again. So I said a quick prayer and chose option 18; authorizations. Bingo, I chose the right option. I am then told to enter my id# and group # (which is in such fine print that I need to get a magnifying glass out to see the numbers), and then told that my communication may be recorded for quality assurance purposes, hmmmm.... After I punch in my id and group #, I say another prayer that I didn't make any mistakes, and then push the # sign. After 5 minutes of listening to obnoxious music and advertisements telling me how caring my insurance company is, a CSR comes on the line. She asks me again for my id # and group # and I begin to realize that I'm Alice and I've fallen down the rabbit hole, and Johnny Depp isn't there to meet me. I have fallen into a reality that only makes sense to the insurance company and my wonderful CSR. I'm asked to state my problem, I tell the CSR that my doctor has prescribed a wheelchair for me, and I need to know the procedures to get one. She then tells me I need to use an authorized medical supplier, and asks me for my state and area code. I wonder what information pops up when I give them my id# and group#. After she gives me a long list of cities that are 60 or more miles away, she finally comes across one that is in a neighboring city, and I take down the address and phone number. My arms and hands are now aching because holding the phone up to my ear is so painful, I decide to take a 5 minute break before I proceed any further.

Woohoo, I'm on my way, I make the phone call and get a recording, "We're sorry, the number you have just dialed is no longer in service, please blah, blah, blah.... Arggg, I call back the insurance company, and after spending 15 minutes pushing a million bazillion numbers, I'm back on the line with a CSR, a different one of course, so I tell her my story, and she gives me a web site to check. We say our goodbye's and I go on line. I'm told I need to register to get the information I need, so I follow the complicated list of info needed to become a registered member, and I am denied! I try 4 more times, and I'm told to call customer service. So I call the number, and again the animated phone service has me jumping the hoops needed to direct my call, and finally I'm given a CSR. I tell her my problem, she asks me for my id# and group # which I now have memorized. She types in the info, which she proceeds to tell me that her computer is running slow, and it may take a few minutes, chirp... chirp... chirp. Finally she is back on the line with a hmmm..., this is strange, you are not coming up, can you please hold...... CSR comes back and is wondering if I work for _____, I say yes, and she says oh, your group doesn't have access to this site, you need to go to another site to get your information. She gives me the site info, and wishes me good luck, which I know I'll be needing at this point in the game.

I go to the new site, and bingo, I'm able to log on and access the information I need. I find the only medical supplier in my area, and give them a call. I am told it is a rental company, and to bring in my prescription. I hang up the phone and realize that I need to start all over, because I do not want to rent a chair for what appears to be the rest of my life.

So I call the insurance company again, and after the may hoops I automatically jump through, I'm back on the line with a CSR (a different one than the first two). I tell her my problem, and she doesn't know what to do, and puts me on hold to ask a supervisor. I couldn't be the first person that insurance company has come across that needs a wheelchair permanently! The CSR gets back on the line and asks me what my doctor told me to do, now this was 6 months ago, and all I remember was him telling me he got one for his office at Sam's club for around $100.00, and that he would see me in 6 months. The CSR laughed, and told me that I needed to contact my doctor, because he is the one who needs to take care of it. Thank you for calling and have a nice day. I'm thinking to myself, are you sure, this is the doctor who recommended I go to Sam's club!

I look at my clock and was shocked that it said 11:55, I began this quest at 9:00. My doctor would be going to lunch in 5 minutes, and wouldn't be returning until 2:00. I would love to have a two hour lunch break! I was totally drained, and decided to wait for my next doctors visit (which is in a week), to complete this task. I am not up to jumping through a new rabbit hole in which my reality depends on a doctor who believes I can get a quality wheelchair for $100.00. I'd like to see him sit in it for 4 hours, or try pushing the wobbly wheels up a curve!

After spending hours on the phone and accomplishing nothing, I was drained and frustrate. I've learned through my experiences that things are easier when you're not alone. I called a friend who is familiar with the frustrations of the insurance companies circus hoops, and after ranting and raving to her I felt so much better. Even the yucky things in life are better when shared with a friend, thanks Von!

Back to my reality, Dysautonomia, my new normal.

Always inspired,
Michele

Pamper yourself

2010-03-28T15:35:00.000-07:00

Crash and burn
Been hit by a truck
Been put through the blender
Been put through the spin cycle
These are descriptions people use when their bodies hurt from head to toe, and how I usually feel from dawn till dusk

If I could pick a storybook character that I most resemble, it would be the princess in "Princess and the Pea". Being sensitive to the touch is not something new, I've experienced it as long as I can remember. I have had the uncanny ability to feel a wrinkle on my bedsheets or the seams in my cloths all my life. My former husband nicknamed me "Princess and the pea" very shortly after we were married.

Since my dysautonomia diagnosis, my sensitivity to touch has multiplied a hundred fold, and in the past month it has become even more pronounced. I wake up in the morning feeling like I've been hit by a truck, but I push through work and find the ability to mentally ignore the pain until I get home . I often look at different parts of my body for bruises that aren't there.

I was feeling pretty beat up one day last week, and headed for my bath, I went to grab my favorite washcloth, the one that is so soft it feels like a baby chick, and noticed it wasn't as soft as before. The disappointment surprised me, so I began to mull it over while I was soaking in the tub, and realized that I get very little positive physical experiences any more. Dysautonomiahas unfortunately stolen many things that give me pleasure, working out, shopping, gardening, singing, even cleaning makes me smile. Feeling the softness of that washcloth feels wonderful and makes me smile. I realized then that I needed to start filling my life with those small things that make me feel good. I began making a list.

1. Softy washcloths
2. Softy socks
3. Vanilla scented bath salts
4. Mango scented body butter
5. The smell of coffee brewing
6. Pistachio gelato
7. Dark chocolate dipped pretzel
8. The sound of rain
9.The sound of my water fountain
10. My garden when the birds and insects are weaving in and out of the flowers
11. The feeling of my dog Elmo curled up next to me

These are all things that are easy to include in my life every day. But for some reason I always had an excuse for not getting what I need. Family needs or energy spent to get those thing has hindered me every time. I am realizing that those things are my rainbow after the storm. I deserve the little things that make life more tolerable.

This weekend I found a way to get everything on my list. I explained to my children why I was sending them out on my own personal treasure hunt, and they responded with huge smiles on their faces. We all deserve the little things that make life enjoyable, God didn't create cotton or scents by accident, they were designed to enjoy. Even if you don't have an illness, it's important to fill your life with the things that make you smile, so you can be more joyful around those you love. Don't forget to pamper yourself, you and those around you deserve it.

Always inspired,
Michele

Friendship and Chronic Illness

2010-03-20T14:05:00.000-07:00

Having a disease like dysautonomia can make it easy to be angry and play the blame game. This disease has taken so much away from me, and if you have read my blogs, I surely don't need to list them. When I first thought about writing a blog on friendship a month ago, it would have been other directed. I would have cast blame on friends no longer in my life (or barely there). I would have totally blamed this disease, and never cast the blame on the one most responsible, MYSELF! But I can't lay total blame on dysautonomia or my friends for my isolation. Isolation is a choice, a choice only I can be held responsible for.

This disease can definitely rain on your friendship parade. Working makes me too pooped to do anything else. Weekends for me are spent re cooping from the previous week and building up my strength to go to work the next week. Phone calls are difficult, holding the phone to my ear for more than five minutes is painful (and I don't believe in speaker phone, it's a privacy thing). It's hard to make future plans when I don't know how I'm going to feel at any given time. The meds I'm on can make me a bit sullen and uncommunicative. Then there is the fact that when I am out with friends, I often have to cut it short because I am too tired to continue. There's also the tricky business of having friends over, and telling them they need to leave, because I need to go to bed (what kind of friend is that?).Then there's that voice in my head that whispers little lies such as "you've become quite boring since you got sick" or "who wants to hang out with a couch potato" or "if you call and ask them over, I'm sure they have better things to do than sit with you!" Now some of these things may be true, but believing these lies only fuels the fire of self doubt, and makes that deep hole of isolation even more difficult to climb out of.

To be totally honest, friendship involves some work. It involves time, commitment and communication. And all of these take some energy on my part, and energy is the one thing of which I have so little of, and it is this lack of energy that often derails the friendship train. For me it's easy to allow lethargy to take over, to remain in isolation, which makes it easier to forget what it's like to experience special moments with friends.

It would be very easy for me to submit to a life of isolation, to accept it as my new normal, like everything else I've learned to accept since my dysautonomia diagnosis. But thankfully there is another voice that speaks louder than the self doubt. A strong voice of determination for what I really need. I wasn't placed here on this earth to be in isolation. I'm meant to be connected with others. I'm at my weakest when I'm alone and vulnerable, I'm stronger in unity with others. It's not just for my sanity, but for theirs as well. My choice to isolate myself hurts them as well, it robs them of the purpose I was placed in their lives for, to be their friend.

What I'm learning from this, is that my true friends will sit with the couch potato, they won't baulk when I have to leave early, and they will only want what's best for me, if I send them home early. The fair weather friends will do exactly as the voices of doubt said they would, and those are not my friends. In order to have friends I need to be one, and joyfully invest the energy to be with them, and reap the rewards of my small investment.

Inspired,
Michele

P.S. I'm thankful for this outlet to express the areas in my life I'm struggling with. It often forces me to seek solutions to these problems that I wasn't ready to deal with until I decided to blog them. Thank you for your continued support and encouragement, without it, I would probably be floundering in self pity and doubt.

Chronic Pain Drain

2010-03-12T14:41:00.000-08:00

The reality of my chronic pain came to the surface this week when I snapped at my 23 year old son over the laundry. If you know anything about me, I'm a pretty easy going gal. I don't lose my temper, I think before I speak, and when I do speak it's pretty well thought out. There is no purpose or sane reason behind raising my voice over something as simple as the laundry. After I left the wrath of Mount St. Helen's spewed all over my now shocked and peeved son, I had to evaluate what could have possibly brought me to that uncharacteristic snapping point. I began to make a list.

1. My wet laundry is sitting on the floor, and my sons laundry is bouncing happily in the dryer.

2. Every task is twice as hard as it use to be, and I need to finish the laundry while I still have some strength left in me.

3. Nausiated (most of the day, every day)

4. Dizzy (off and on all day)

5. Tired (always)

6. Short of breath

7. Tachycardia

8. My body hurts all the time, and it's zapping every ounce of energy I have.

In dealing with my more severe symptoms of dysautonomia, I had ignored the fact that I am in constant pain all the time. If I could discribe how I feel, I would have to say it's how how your body feels when you have the flu. Add the feeling of being tense (the calgon, take me away, kind of tense) in every muscle in your body. The other day a student wanted to get my attention and began poking my leg with her tiny finger, it felt like I was being poked by a cattle prod. Well, being in constant pain and fatigue is sooner or later going to creep into your personal life. And for me, my recent blow up on my son, was a wake up call to come up with a plan for dealing with this pain.

1. I needed to check with my doctor to see what can be done for the pain. In my case, I also have arthritis, so the doctor wants to attack the joint pain with anti-inflammitories. If that doesn't work, pain pills will be his next plan, which I will then look for another opinion, masking the pain doesn't cure the underlying issue in my opinion.

2. Listen to my body when it is in pain, and give it the much needed rest it's crying out for.

3. When I am in pain, delegate tasks to those with more healthier bodies in my household. I hate asking for help, but I hate hurting my family members hearts with sharp words caused by pain that could have been avoided if I just asked for some help in the first place.

4. When I feel like I'm ready to lose my temper, I need to take a moment alone to reflect on what's causing the anger. This advice is good for everyone, In my recovery group (I have an eating disorder), when we are ready to fall into unhealthy habits we do a H.E.A.R.T. check, and ask ourselves these questions. Am I Hurting? Am I Exhausted? Am I Angry? Am I Resentful? Am I Tense? If the answer is yes to any of those questions, then you need to ask why, and work through the reason. This works for physical and emotional pain.

5. If I lose my temper, I need to work through the H. E.A.R.T. check and discuss it with the person I just hurt.

Hopefully if I work through this plan, my family will experience a much more pleasant mom, and I will reap the benefits of working through the symptoms that effet my life daily.

When living with a disease like dysautonomia that has many symptoms, I have a tendency to focus on the symptom that has the greatest physical threat to my body. Unfortuanately in doing so I usually ignore other symptoms that may be threatening as well. I am now keeping a simple journal with my symptoms and how they effect my lifestyle. I will then have something to bring in to doctors visits that will hopefully give the doctor a better idea of everythng I'm experiencing and how to best treat my disease and its symptoms. And I will also have a better understanding of how each symptom effects different parts of my life.

Always inspired,
Michele

e doesn't=mc2, e=mom of two

2010-03-01T20:09:00.001-08:00

I'm not Michele the science gal, but I do know that my body does not follow the laws of energy produced, nor does my body follow the laws of gravity. If Albert Einstein or Isaac Newton were alive today I'm sure I'd be in deep doo-doo for questioning their historic theories. But they're not, and its MY blog, and I can say whatever I want. My body stopped following the laws of gravity two years ago, and because my body works oober hard defying the laws of energy just to pump blood to my head, any laws on energy and mass no longer pertain to me.

About a year ago I read a great blog by someone with Lupus, called the spoon theory (I highly recommend it), which explains the difference in the amount of energy it takes for someone with an illness similar to mine, compared to the average person. I have my own comparison, I've named it "young mom of two". I figure most people know what it's like to carry a crying baby for a long period of time, and if you haven't had that experience, then pretend you're carrying two heavy bags of potatoes and your mate is yelling at you non-stop for 45 minutes!

Imagine you're a young mom of two, one child is 9 months and 22 pounds, the second child is 3 years old and weighs 34 pounds. Now imagine you need to get ready for work, and dear husband has left the childcare task to you. You have a presentation to give to the big wigs in your company. You have 45 minutes to get yourself and your precious children ready. So you're getting ready to put make-up on when the 9 month old gets fussy and begins to cry. You pick her up and rest her on your hip and continue to try to apply your make-up, while trying to rock and sooth her. The 9 month old continues screaming and has spit up on your new suit, your arm is aching. And now your three year old is whining for attention, you are now tense and frazzled. The 3 year old begins to scream, so you run for the baby back pack, and slip the 9 month old in, and grab the 3 year old and rest him on the hip that previously was taken by the 9 month old. You try to rock, sway and hush the screaming children, but nothing seems to calm them down. You have finally managed to apply a meager amount of make-up, your swept up hair style is falling in your face, your exhausted and ready to cry. You realize you still need to blow up a dozen balloons for the presentation at work. You're still holding both whining children, and you begin blowing up the balloons, first one is done, and you begin to feel like you may make it out the door on time. After about 5 balloons, you are out of breath, your arms are aching from holding the two children, and you continue to blow! By the tenth balloon, you are dizzy and about to pass out. You complete the last balloon, the world is spinning, but you know you have to get the kids dressed. You've dressed the children who are not cooperative, and head for the door. You realize you haven't had a thing for breakfast, so you run to the fridge for a quick swig from the milk carton (I know it's gross, but desperate times need desperate measures). After about the second swig you realize the milk has gone sour, but it's too late you've already swallowed (ewwww). As you grab the kids to leave, you're arms and body are fatigued from carrying the children, you are dizzy from blowing up all those balloons, and ready to barf from the sour milk. You contemplate calling it a day, but you catch your breath, and head out the door. It turns out to be a normal day at work. Your presentation went great, and they loved the balloons!

Having dysautonomia, makes my morning routine quite similar to "young mom of two". Just getting out of bed in the morning sometimes feels like I have blown up a dozen balloons. Applying make-up often feels like carrying two unhappy babies for a long duration. The nausea, is a daily occurrence that I still haven't gotten use to it. The only difference between me and "young mom of two", is that one unexpected task or running a few minutes late could send me to bed for the day. It still amazes me that a simple task like putting on make-up that used no energy for me before dysautonomia, now with dysautonomia the amount of energy I use is mind blowing. Miranda (a fellow dysautonomia friend and mom of two young girls) I don't know how you do it!

Just finished flipping pancakes, I think I need a nap!

Always inspired,
Michele

Pray Without Ceasing

2010-02-27T08:18:00.000-08:00

Being a Christian with dysautonomia gives me the opportunity to look at my disease as a way to see how God wants me to learn from the experiences of this disease. To be honest, there are times when the symptoms of this disease make that a bit difficult (I'm sure you've seen some of the frustration in these blogs). I do have to say, that I NEVER experience brainfog while praying. Those names and details are always quite clear. I sometimes wonder if I was always in prayer, that maybe I'll never experience brainfog again! I can just imagine how that might sound as I'm teaching, "Oh Lord help my students grasp the concept of addition, help them to remember that if they add two items and three items they might want to use their fingers or objects to make that concept clearer." I think I'll have to give that idea a little more thought, and conversations with people might need a little more creative thinking as well.

Prayer has always played an important role for me as a Christian. It's pretty easy for me to pray for my close friends, people on the prayer chain at my church, and the woman I have become friends with through dysautonomia and facebook. My chair in front of my computer has become a regular place of prayer for me as I daily hear of the pain and struggles of these brave woman and men with this disease. It's easy for me to relate to their pain and frustration and to beseach God because I so easily relate to their pain and frustrations.

The area of prayer I struggle with the most is prayer for my health and healing. Surely others deserve a miracle more than I do. A friend with cancer needs to survive so that she can spend the rest of her life with the family that needs her. Those struggling with worse symptoms of dysautonomia deserve to be healed quickly because they have experienced pain that I haven't. Sometimes I think it's a lack of faith, other times it's a feeling that I don't deserve to be healed. It's at those times that I need to remember the length God went to when He gave me everlasting life. I have seen God answer so many prayers in my life. I have seen food provided during times of financial hardship, I've seen relationships restored when there was no hope, I've been given peace at times of great stress, and I've watched the impossible made possible, but this is one area of prayer I struggle with most.

Don't get me wrong, I do pray for myself. I just don't pray for healing with the same passion and conviction as I do for others. This morning I asked myself how long do I pray for healing? And the answer was loud and clear (God does tend to shout at me at times). Pray without ceasing! Don't stop! Pray with conviction! Pray because God doesn't want you to suffer! Pray because you deserve to be healed! I just need to remember God's timing isn't my timing. Sarah had to wait for years to give birth to a child she desired with all her heart. Two years is nothing. compared to her wait. Waiting isn't an easy task, as an American, I can be pretty impatient. But sometimes I just need to be patient and obedient. Remember to pray without ceasing!

Always inspired,
Michele

The Colors of Dysautonomia

2010-02-25T19:09:00.000-08:00

Purple, purple, purple.

Purple, purple's what that spells.

Purple grapes on the vine.

Purple Kool-ade's fine.

Purple, purple's what that spells.

The color songs we sing in my classroom are the most requested songs in my room, they sing with as much gusto as a pub full of men singing their favorite beer song. There is a passion for color that begins at an early age, one of my favorite childhood memories was when I opened up my first box of Crayola crayons in the 64 count box. I remember the waxy smell, the sharp poiny tips with the sharpener in the back of the box (Crayola was ingenious to insert that sharpener in the back, it meant that their young enthusiastic customers would quickly sharpen their way to another new box of crayons in no time),and the endless possibilities those crayons represented, made me believe I could create anything my heart desired.

I have always been intrigued by color. As a design major I took several university courses on color, how it affects mood and emotion. I studied how to use color in marketing and interior design. Color has a huge impact on our mood and feelings. Cool colors calm, and warm colors excite us. If you don't think you're affected that much by color, see how you feel when your next door neighbor paints their house orange or pink.

I discovered later in life that my association with color is a bit different than many of you. I have always seen color in the things I taste and smell. I discovered this quite by accident one day when a friend asked me if I would like an avacodo she had picked from her tree. I responded by saying "No thank you, I don't like avacodo's , they tastes brown," she questioned me further, and this sense of taste and color that I have had all my life and assumed everyone else had as well was to be something unusual and unheard of. Several years later I discovered that there are others with this unique ability, called synesthesia.

It figures that dysautonomia is not blind to color, and has displayed itself in various ways throughout my body.

Purple: My favorite color. Hands and feet turn various shades of this color with a dash of black and blue to highlight my eyes.

Green: The color my students say I turn when I'm feeling extremely nauseated.

Blue: The color I feel when the air is thin and wishing I had a portable airtank.

Gray: The color of brainfog, that lovely inability not to finish a thought or find a word or name.

Yellow: I see this happy color dancing before my eyes just as I'm ready to pass out.

Red: The color that represents the strange tingling all over my body when my body can't handle heat or an unexpected activity. This feeling compares to the scene in Harry Potter and the Chamber of Secrets, when Harry, Hermoine and Ron take polyjuice potion. The cameras focus in on Harry's hand that is bubbling through his veins. Every time I go through this I feel as if I'm in a sci-fi movie and I'm going to turn into some outlandish beast.

Silver: The tingle and sharp feeling I have on the tips of my fingers and toes.

Black: The dark thoughts I experience when the doctor ups my meds.

Color still fills a unique perspective in my life, but dysautonomia has given it a new way to look at it.

Still inspired,

Michele

P.S. I struggled for a couple of weeks posting this blog. I had fun pics I downloaded to go with the colors I see and feel. But this blog application doesn't allow for pics to be placed in various places in the blog. Having my creativity squashed, and the frustrating hours of trying creative ways to make this my way made me less inspired to finish this blog. I had even considered changing blog sites, but didn't want to make that change. A new topic came into mind, and I knew I had to get this one out, even if it didn't give me that warm and fuzzy feeling inside. I hope everyone is having a good day.

Living out my defiant teens in my forties

2010-02-10T16:47:00.000-08:00

When I look back at my teen years, I believe that I was every parents dream child. I worked hard at school, did my chores at home, went to church, followed the rules, no drinking, no drugs, I wasn't promiscuous, and there wasn't a defiant bone in my body. Now many of you may be thinking poor thing, she missed out on all the fun, but reality is, I had a blast, and didn't believe I was missing out on anything. My life seems to have followed that path with the exception of my marrying my former husband LOL. I was always a straight and narrow, don't wander off the path kind of gal.

Now I'm in my late forties, quickly approaching fifty, and I've noticed that rebellion has turned its ugly head in my direction. Dysautonomia compares to a hard nosed parent or an overbearing husband. Dysautonomia has too many restrictions and rules to follow. Too many don'ts and the do list is no fun. My body feels like I'm always "in the time out chair", or "the old ball and chain". Just about everything I do has restrictions, and is often very frustrating.

There are days when I'm just tired of following the restrictions dysautonomia has placed on my body. Sometimes I just need to do what I want to do, and pay the price just because it's worth it. Even if the price may be a trip to the emergency room or a day in bed. Well on Monday I had one of my rebellious days. And before your imagination starts wandering, I didn't go out drinking or carousing, or chasing after loose men (I still haven't taken the trip to "that" wild side yet). I just had to prune my peach tree. I'm sure I've disappointed a few of you, but there's just something about hard work, pruning, and proving to my former husband that I can still keep up the house. Truly the husband issue just plays a small part in this.

The reason pruning the tree is so difficult is that many of my dysautonomia symptoms make it practically impossible. I can't hold my hands over my head for more than a minute so lifting pruning sheers to cut branches is a bit of a challenge to begin with. Getting up on a ladder can make me dizzy and tachy. Tilting my head back to see which branch to cut causes dizziness, migraines and a variety of other symptoms. I have no arm strength, so squeezing the pruning sheers is nearly impossible, and finally, bending over to throw away the branches makes me dizzy. I'm sure many of you are wondering why I would want to put my body through this kind of torture, and all I can say is "I don't know, I just want to!" I guess it's the same reason that my kindergartners have for cutting large chunks of hair from their heads or smelling vomit that has just been covered with sorb-it. It doesn't make sense, but they do it anyway.

So on Monday I went out to my back yard with pruning sheers in my hands and a plan to limit myself to trimming two to three branches at a time. So I begin pruning branch number one, I can barely balance the pruning sheers over my head, but I manage to lop off my first branch, no dizziness and no damage done, and a small victory dance in my head. Off to branch number two, I struggle to get the pruning sheers over my head, and can barely squeeze them closed, branch number two falls, but I can barely move fast enough to step aside to keep the branch from hitting me. Now I know I should stop at this point, but I never stop when I should, and to be honest I knew this before I started and just lied to myself about having a plan, just to say I had one. I now attempt to cut branch number three, my arms are shaking, but I do manage to hook a branch between the sheers, and I'm jubilant at the success of this small feat. I attempt to squeeze the pruning sheers, but all strength has left my arms. I'm determined to cut the third branch, so I come up with a brilliant idea, I use my head "literally". I put my forehead against one of the lopping poles, and grab the other with both hands. I then push the handle of the pruning sheers toward my head, and snap, the branch is cut and begins to fall. I am now totally exhausted the branch is falling, too dizzy to move I just duck my head and hope that when the branch falls it doesn't hurt too badly. I smile at the craziness of this experience and chuckle because I feel I'm in the middle of one of Lucille Ball's episodes of "I Love Lucy". I've escaped my hard headed pruning adventure without a scratch. Now again you would think I should give up at this point, but no, the success of the last cut has given me a bit of an adrenaline rush (another wonderful but usually inconvenient symptom of dysautonomia), I take advantage of the rare timing of this usually inconvenient symptom and attempt another branch. Branch number four is exactly like branch number three except this time I'm left without the adrenaline rush and I'm totally wiped out. I finally listen to my body, I have no choice at this point, and I head for the house, my wonderful body lets me know that I'm now going to pay for that brief amount of defiant behavior. I manage to make it to the door just as my world around me begins to swim and dance and mock me by saying I hope it was worth it. I sit down before I actually pass out, I lean my head against the back door, close my eyes, feel my heart racing through my chest, I'm gasping for breath, my head begins to throb, and I think to myself, "yes, it was definitely worth it!"

My body did pay for my brief moment of defiance, but to be honest I'm looking forward to my next adventure.

Truly inspired,
Michele

Dysautonomia SUCKS!

2010-01-30T19:02:00.000-08:00

If your're looking for something inspirational in this blog, you might want to look at some of my previous blogs. Not in the mood to blow sunshine up (hmmm you get the picture).Well I'm having one of those days. Actually it's been a rough couple of days and I thought I'd like to have a written record of my bad attitude, it will probably come back to bite me in the rear later, but it will be worth the price.

I've been brought up with the mindset that if I didn't have anything nice to say, then don't say anything at all. Well, I've done that for two years, and now I just want to scream, "I'm tired of waking up every morning feeling like crap!". "I want my old life back!"

Nausea, brain fog, chronic fatigue, tachycardia, shortness of breath, insomnia, medications that could easily place you in a scene from "one flew over the cuckoo's nest", and temperature intolerance are all symptoms that can easily be hid behind a great pair of jeans a t-shirt and some make-up. So can frustration, and anger. Just put on a smile and tell the world you're the same as always. Having to tell myself daily that I have nothing to really complain about because "at least I don't have cancer" isn't easy, and the guilt I feel because I'm upset about my illness when there are people out there who are dieing and have a better outlook on their illness than I do. Having a positive attitude can help, but sometimes you just have to say "Life sucks right now!" and deal with the guilt later.

I would just like to wake up one morning not feeling like I'm going to puke and pass out. I want to go to the mountains, go hiking, and play in the snow. I want to go to the mall and shop and not drop. I want to sing my favorite songs all the way through, and sing another, and another, and stand while singing. I want to work in my garden, and paint my living room. I don't want to be sick, and I don't want to ask for help. I know there are some great lessons in all this, but today I don't want to learn them!

Well dysautonomia sucks, thanks for letting me share.

Not very inspired,
Michele

No longer on the River DeNial

2010-01-24T20:38:00.000-08:00

For the first time I realize that I have accepted my dysautonomiaas normal. I don't seem to be comparing what I could do in the past, with what I can't do in the now. Being proactive to my dysautonomia symptoms instead of reactive. I'm beginning to have realistic expectations of my days instead of disappointment at all the things I can no longer do. What a relief it is to take my life off the river of denial and step onto the solid ground of reality.

It's funny how the things I thought I could never get use to are a part of who I now am. Some of my normals include:

Waking up ready to down a large quantity of water before getting out of bed to relieve an already full badder.

Dealing with nausea every morning, and not getting a precious bundle of joy after 9 months of morning sickness.

Wearing compression stockings at the young age of 49 instead of the ripe old age of 70.

Parking in the handicapped parking, and being ready to defend myself when someone questions why someone who doesn't look handicapped is using the spot. My fists are clenched and ready to fight. My fighting techniques would get anyone rolling on the ground in laughter, and they would probably walk away wondering if the state considers the insane handicapped, and that's how I acquired my plates.

Purple, my favorite color, how many people can say that their hands and feet show off their favorite color every day.

Always being prepared that bending over to pick up something off the floor, may leave me looking and feeling like a drunken sailor.

Accepting the fact that during my drunken sailor state, others may be questioning my sobriety.

On those days when oxygen is in short supply, it's ok that my sentences will usually be incomplete and end with an ahhhhh what's that word? Or what's his name? Or even what's your name?

Using a pill box with the days of the week stamped on it doesn't make you old.

When my heart is racing through my chest and I'm short of breath, I just pretend that I just ran the 6K.

It's ok to be flopping out of the bathtub like a fish out of water ( I can see my gills, oh I mean nostals gasping for air) because of my heat intolerance and gravity issues.

Wearing a medical id tag can be fashionable with a little web searching.

Asking for help actually makes a task more fun.

I believe I know more about the auto immune system than most doctors.

I won't get arrested for breaking some sort of health law for eating salty snacks and adding a ton of salt to my food.

Being white because of the lack of sunshine is the "new black" of fashion.

Icevests may not be a fashion statement, but they do attract hugs.

Eating 6 meals a day won't cause obesity.

Some times it's worth the price of a day in bed to do the thing you love most!

Living with dysautonomia has been challenging, but I'm getting use to my new normal. As most of you know I love the serenity prayer, one part has always stumped me "accepting hardship as a pathway to peace". How could hardship lead to peace? Well in my case, it's the accepting of the hardship of dysautonomia instead of fighting it that has made my life more at peace. I still have those days when the symptoms are difficult to carry, but that's when I rely on friends to carry the burden with me.

Always inspired,

Michele

Teaching with P.O.T.S.

2010-01-16T09:04:00.000-08:00

Teaching with P.O.T.S. (Postural, Orthostatic, Tachycardia, Syndrom) has been a unique experience as well a a positive one. Working with this group of amazing students has been a blessing, and the curse of having dysautonomia has been a growing and positive experience as well.

Prayer in the Classroom

Teaching has it's challenges, add working without an aide or any parent volunteers can make things a bit harder, but if you combine teaching with having POTS, it can be a double whammy.

One morning, I was feeling dizzy and out of breath from counting to 100 with the students, and they had become very chatty, and a bit rude. I didn't have enough oxygen or strength to get the children's attention, so I sat down and closed my eyes. Being a Christian I also said a short prayer (silent). Immediately the class became silent, I believe an answer to prayer of course, so I thanked God for His answer, and opened my eyes. The students were sitting perfectly and silently, and I gave them a big smile. One of the students asked me "What were you doing doing Mrs. McGough?", not wanting to cross a fuzzy line of school ethics, I asked him, "What do you think I was doing?" He replied, "resting", another student said, "no, I think she was praying". I smiled, confirming the second child's answer. The first child asked, "What were you praying for?" again I replied, "What do you think?" he answered, "that we would be good". I smiled again, thinking God had truly answered prayer that morning. I then had the strength and the attention I needed from my students to teach the next lesson.

My lesson: Prayer does work in my classroom.

The ice vest

One of my students went to the office wearing a very cute headband she had made in class with ears attached to a fan folded strip of paper. The secretary, who knew my class was learning about ears and hearing for our five senses lesson, asked the student what she was learning with her ears today. The students response was "We learned that Mrs. McGough was wearing her ice vest so we couldn't go on our listening walk, so we just sat." The secretary asked, "So you didn't hear anything today?" The student replied, "We heard lots of stuff, we just couldn't walk and listen." This student was obviously more focused on my ice vest then on the lesson, but it did give quite a few of us a good chuckle.

Lesson # 1: The listening activity was actually better without the distraction of walking, I would not have known that if I hadn't been struggling with heat intolerance that day.

Lesson # 2: Wearing an ice vest usually accompanies more hugs than usual, I often have to pry a student away, who is using my vest to cool themselves off.

Little Helpers

It's common for teachers to encourage students to help with different classroom jobs in the classroom. Typical jobs would include line leader, door monitor and librarian. Since my POTS diagnosis, getting up and down can be a bit exhausting, but I usually just pushed through the tasks. One day I asked a student if they would mind turning on the air conditioning for me because I felt a bit dizzy, he responded with a smile and asked me if he could be my "air conditioning guy". Well that day prompted other students requesting to do odd jobs, and the number of jobs has stretched a bit to include;

Tissue monitor, this student insists on getting me a tissue every time I sniffle.

Baby wipe monitor, this students gets me a baby wipe at any sign of messy hands.

Heater monitor, this student turns on and off the heater as needed.

Sanitation monitors, these students are in charge of keeping the floor litter free.

Lost object finder, when ever I misplace an item this student searches for it. Wish I had one of these at home.

Dropped object picker upper, since bending over is a problem, it's great to have someone pick things up for me.

I could go on, but you get the picture. Each of these jobs was student generated, and teacher appreciated. The students are learning about helping others and taking pride in a job well done.

My lesson: It's ok to ask for help, even from a five year old, it makes them feel needed and important.

I realize I'm very fortunate to be able to work and have POTS. Many of my friends with dysautonomia can't, which has given me an appreciation for every day that I can work. I walk into my classroom every day aware that this could be the last year I'm able to work. Working each day as if it could be your last definately changes your attitude. I have never enjoyed working as much as I do this year.

Always inspired, and grateful to work,

Michele

An ode to teacher's gifts

2010-01-02T18:03:00.000-08:00

Many off you may think less of me when you have finished this blog, but since it's my blog and you're reading it I might as well give it a go.

I usually use this blog as a way to express my personal frustrations and insights I've experienced since I've been diagnosed with POTS. But as I was clearing away the gifts under my Christmas tree, and reflecting upon those gifts I received from my precious students I began to chuckle at this question in my head.... "What were they thinking?" (the students parents that is).

So here are a few of my favorites.

Dragon and castle plastic snow globe. I guess I can put that next to my Harry potter wand and my Lord of the Rings sword (I really don't own these, but my parents must think I do).

Extra large plush bear. This would definately go with my Raggedy Ann and Andy (sorry Von) which again I don't have.

Pink, purple and magenta super fuzzy scarf. This would look great on a six year old or maybe a life size Barbie, though I believe even she has more fashion sense.

A 36" ceramic plaque in gold embelished with Cherubs. It must weigh 25 pounds! I'm sure Wayne Newton would have loved this gift. I would probably need to hire a handy man to install it on my wall, Hmmm..... Handy man, might be worth digging it out.

Purple anything, lotion that instantly causes my lungs to close up, sweaters, blouses, candles, or stationary. This is the only draw back to sharing my favorite color with my students.

4" plastic cactus, which will go nicely with the plastic velvet roses I received for Valentines day. These items will do so much for our environment, just think of all the oxygen they produce in their lifetime!

The little nighty one of my students claimed that "my daddy picked that out just for you Mrs. McGough". I later found out that one came from one of my student teachers.

At least a dozen platic statues in various shapes and sizes that could easily fill a chotchky cabinet if I chose to do so.

Now I do realize that it's the thought that counts, but until I started this blog, I was at a loss as to what to do with all this stuff that has jam packed my storage shed. The answer came to me as my guilty conscience became concerned at what some of my church friends or even my pastor (hi Pastor Tom) might think after they have read my unappreciative rantings. Then an idea popped into my guilty head, I'll have a garage sale, and the procedes can buy a chicken or a goat for the poor in neady countries. Or maybe in the offering. Feeling better already, though I think that might be an attempt to buy my guilt away, and that won't work. Hmmm I'll have to give it more thought.

Now I have received some wonderful gifts. Such as book store gift cards that enable me to purchase more books I can read to my precious students. I treasure the hand made gifts such as the hand made ornaments I pull out of my ornament box every year. Those ornaments are special to me. I have to be honest though, they don't really go with the silver, gold and white theme on my Christmas tree. Now I may put them up some day if I become one of those people who has a home big enough to have a tree in each room, and is highlighted on the HGTV channel. Now I know many of you may be shaking your head in disgust at my lack of sensitivity in this matter, but to be perfectly honest, my own childrens home made ornaments are not on the tree either!

Well it's time to get back to putting away those special gifts, I may have to get another shed if I don't have that garage sale.

Always inspired,
Michele

Driving Miss Michele

2009-12-21T15:17:00.000-08:00

I remember watching "Driving Miss Daisy" several years ago, and thinking "When I get old and can no longer drive myself, I could never afford the luxury of a driver as Miss Daisy could, and if I couldn't drive myself then you might as well put me out to pasture."

My passion for driving began when I was very young and would go to the track and watch the Indy races with my father. He was also the one who taught me about cars and their engines (or ponies). We would go to car lots together, and look at the newest muscle car out on the market, and I loved every minute of it. When I'm in my car I have to be first and fast, even on my two minute drive to work. I'm sure I'm one of those people you shake your head at as I pass you by only to stop at a light a few seconds later. It doesn't matter, I got there first! Driving and driving fast are as much a part of me as my love for fashion. Recently on fb there was a "which cartoon character are you survey", my answer was "Speed Racer", Go speed Racer, Go Speed Racer, Go speed Racer, go!

I discovered a new limitation to my disease this Summer when I offered to pick up a friend from the airport, I hadn't done any long distance driving since my diagnosis with POTS, and a trip to the airport would be fun. As I was driving my arms began to become fatigued, and by the time I arrived at the airport they were so fatigued I could barely hold the steering wheel. That day I discovered that 25 minutes is my driving limit. At the time I took the news with a grain of salt, I think I was trying to deal with my heat intolerance issues, and I seem to only be able to handle one issue at a time.

Well, losing my long distance driving ability didn't really have an affect on my life until my father passed away this fall. My parents live five hours away, and getting to my mom on my own is an impossibility. I want to visit her and be by her side as much as possible. I want to help her get through this terrible time, and I can't be there for her. The old me would have made regular visits, now I'm at the mercy of my kids, who have very busy schedules. To be honest, it's frustrating, I'm suppose to be the driver, not "Miss Daisy"! Like in the movie, it's not about getting to the destination, but about the relationship built along the way.

I know I'm lucky I can still drive, many of my friends with this disease can no longer do so. So instead of whining, I'll cherrish my short distance trips, racing only to be stopped by the light, not by this disease. I can drive my own personal victory lap because, at least I got there first!

Since I first started these blogs, I've come to realize it's my way of putting a voice to the losses I come across because of dysautonomia. It's my way of mourning the loss of just one more thing. Thanks for the support many of you have been along the way.

Always inspired,
Michele

Energizer Bunny where are you?

2009-11-28T21:03:00.000-08:00

I've always considered myself the energizer bunny type, I keep going, and going, and going. As a child I was the student standing at my desk to do my work, I was constantly being reminded to sit down, but my bottom would quickly forget and pop right out of my seat within minutes. As an adult I would be on the move from early morning until evening. Don't get me wrong, I would enjoy a television program in the late evening to help wind me down, but sitting has always been difficult. When I was forced to sit, my foot or leg would still be on the move.

I remember when I was put in the hospital when I was first diagnosed. My biggest complaint was being stuck in bed. Times a wasting, there's things to get done! When the doctors told me I had POTS, which I had never heard of and surely couldn't pronounce, I was told things would be a bit different. Dependency on medication, and a lifestyle change were in my future. I was told that this disease could go ito remission as quick as it came. I'd have to slow down. In my head I thought OK, I can slow down, I can take my medications, I can do this. I had just finished a Bible study about resting in God. I thought this disease was a good way for me to learn a little something about resting and resting in God, and once I learned my lesson, life would go back to normal. Still wearing my rose colored glasses, and need a reality check.

I left the hospital with the thought that I'd have to slow down a little, and that this would probably go away soon. I had learned very quickly that my idea of slowing down was not the same as my bodies idea of slowing down. I was faced with a flood after I came home from the hospital and reality was about to set in. My refridgerator water filter pipe blew and created a small flood two nights after I came home. The family woke to the sound of water shooting across the kitchen and two inches of water on the floor of the kitchen, dining room and in part of the living room. My children and I began using towels to mop up the water, and as I lifted each water soaked towel it felt like I was carrying two hundred pounds across a football field. My children had school and work the next day, so I sent them to bed and I truly thought I could tackle the flooded house. I didn't last very long, out of breath, heart beating through my chest and the room around me spinning uncontrolably, I thought for sure my children would wake up without a mom. That night my body let me know who was boss, and it wasn't me.

I have been on the move for forty eight years and I still think I'm the energizer bunny, but unfortunately the energizer bunny has hit the wall. Picture your favorite toy as a child remember what it was like as it ran out of energy and would move ever so slowly until it no longer moved at all. Imagine you head for the kitchen cupboard for some new batteries, only to find there are none. Imagine the disappointment you feel because you are now unable to play with your toy until one of your parents goes to the store to buy more batteries. That's me! I start out feeling normal, and within minutes I'm laying on the couch out of breath. Wishing I had more energy, and I'm going to have to wait until my body re-energizes itself, which may take hours or the next day. The disappointment I have that I can't finish the task I started.

This morning I woke up with a hankering to tidy up the garage. So, I took on the task in my typical energizer bunny style, but within minutes my body took over as usual, if it could speak it would probably say "ha ha, you are a couch potato, a COUCH POTATO!" I didn't totally listen to my body and I put a decent dent in the project, but what would have taken a morning to do the whole job, took a morning to do a tenth with a dozen couch and water breaks and the help of my daughter.

I may only have a tenth of the energy I had before POTS, but I still have some enrgy to do the things I want to. I'm still getting use to having the mind set of someone in their thirties, with the stamina of an eight year old and a body that doesn't look eighty, a bit confusing...you think!

I guess it's time to quit while I'm ahead, my left hand looks like it has been soaking in purple die, and I keep missing the keys on my last three fingers, until the next post, consider all you can do a blessing, because you never know when you're body might consider your brain a joke.

Still inspired,
Michele

The Chair

2009-11-18T15:49:00.000-08:00

By looking at the title, you would think I was writing about the electric chair. Well for me it might as well be, I'm actually referring to a wheelchair, which for me might as well be a death sentence.

Several months ago my doctor wrote me a prescription for a wheelchair. I had made a joke to my doctor about borrowing a practically antique olive green wheelchair from my church that creaked and clanked so loudly that people 100 yards away were aware that I was coming from behind. The doctor said there was no need to borrow a chair, that I could have my very own, yahoo.

The main purpose of the chair was to have it available whenever I need to walk long distances. Lately I poop out just going grocery shopping, so a trip to a warehouse store, the mall or a large campus would quickly send a circle of stars spinning around my head, and at times a medical crew trying to figure out what to do with me.

Some of you may be wondering what the big deal is. Yes, I know I'm not in it permanently. Yes, I know I'm lucky that I only need it for short spurts of time, and yes, I know I'm lucky I don't have cancer! For me the feelings for "the chair" run deep. I have a sister who was born with Cerebral Palsy, and for most of her life she used crutches to get around. But there were times when a wheelchair was needed. My sister often had major surgery on her legs or hips during the summer, and a wheelchair was needed to get her around. Now being the big sis, I had the privilege of pushing her around. I was her care giver during the summer, and being kids we loved going to the mall. It was only about a mile away, and the walk included crossing over a good sized hill with a paved sidewalk in which I would balance on the back posts of her chair and we would fly down the side of the hill. We had a blast on these trips, I was 12 and she was 8 and we would often push through the mall as if we were parting the red sea. People would dodge us in fear of being crashed into, and we had no fear of being chastised, because who was going to get mad at a 12 year old pushing an 8 year old in casts up to her thighs. These are good memories, but I had a roll to play, and I was not the one in the wheelchair.

For me, I've always been the care giver, the pusher of "the chair", my sisters defender, the healthy one. I was given this roll when my sister was born, and proud to have it. I have known from a very young age how fortunate I am to be able to walk, to be able to help, to be healthy. When I was a young child I always thought I would have a child who is handicapped, because I knew how to do that very well. I never dreamed I would ever have a need for a wheelchair. So here I am, and I can't move forward with this issue. I have two choices, get the chair and do the things I enjoy and miss, or don't get the chair and be stuck at home missing the things I enjoy. The sensible part of me knows what to do, but the emotional part of me still can't move forward.

For many who have illnesses, the difficult decisions, that mountain we refuse to climb are different. For some it may be quiting work, asking for help, using a shower chair, not driving or maybe as simple as using a daily pill box. Each decision is based on our past, our experiences and our individual viewpoints, and these decisions cut down to our very core of who we are.

I know for me this decision means giving up some of my independence, it's admitting I'm weak, it's losing one more thing to this disease that has taken so much from me already, and finally it's losing who I believe I am, the roll I was born into. I'm still no closer to filling my prescription, but hopefully I'll get there sooner rather than later.

Still inspired,
Michele

Medical Food Diet

2009-10-31T21:52:00.000-07:00

For those of you who know me well, you know that if I am dieting it's a cause for alarm, and you may ask me when is the last time you have spoken to your sponsor. So to ease your mind a bit, this was my doctors idea not mine. I'm finished being a slave to dieting and calorie counting.

Before I was diagnosed with POTS I was diagnosed with RA. The medicine I was taking to help lower the inflammation between my joints could no longer be taken because of the issues with my heart, so I was then given a prescription for Naproxin, which I have been on for over two years now. I needed to see my doctor because my perscription had run out, so I scheduled my appointment.

My doctor walked into the exam room and must of seen "easy sell" on my face, or maybe it was the designer purse and shoes I bought before my divorce, whatever it was I was to become the lucky victim of her sales pitch. My doctor looked at my file, and proceeded with the concerned doctor, "so Michele how's the arthritis doing?" she asks. I tell her I'm in pain daily, but the Naproxin does help. She proceeds to tell me that she didn't want me to continue with the Naproxin because of other adverse side effects to my body. She then suggests that diet and a medical supplement might help. She explained why it would be a good idea to change to a healthier diet, and being a bit of a health nut, I jumped on board.

The doctor left the room, and soon a nurse with a plastic jar labeled "medical food", a bottle of vitamins and a pamphlet walked into the room. I should have known anything labeled "medical food" had to be bad. She gave me a five minute spiel about following the diet to a tee, and being the great dieter I am, I told her I was up to the challenge. The nurse put the "medical food" (large plastic jar), vitamins and pamphlet into a fancy bag and charge me a large some of money and sent me on my way. I think I might have been labeled a sucker at that point. But I was going to do this sucker or not!

I get home and began reading the ins and outs of this medical diet that's suppose to relieve my inflammation along with other health benefits, the more I read the more sceptical I became. No milk and no wheat, I'm thinking "I'm sure there's oat bread out there, and I'm sure rice or almond milk will do the trick". it also says no sugar or chocolate, I'm thinking "This sounds bad, but I'm sure I can find a substitute for sugar (no honey either)," no caffeine and no red meat, "hm this may be a little more difficult than I thought, but I'll adjust, and in 26 days I can slowly re-introduce the foods I miss". I decide to begin the diet on Sunday so I can shop for the ingredients on Saturday.

Saturday arrives, and I'm armed with my shopping guide, and a positive attitude. I get to my regular grocery store, I spend an hour in the bread aisle, there is not one single bread without wheat in the aisle! I decide to go to a specialty grocery store later in the day, surely they'll have what I need. I find the rice milk and almond milk, then add stevia (natures calorie free sweetener), along with the many other things that are on my list and head for home a bit exhausted.

Well it's time to do a taste test on the rice milk verses almond milk, I'm expecting them to be tasty, I like rice and almonds, so they must be yummy. I try out the almond milk, yuck! So I taste the rice milk, it has to be good, it's vanilla flavored! I give it a taste, and decide it's the more palatable choice, though no comparison to my beloved milk.

I decide I have to purchase the non-wheat bread, so I head for store # 2, I'm also looking for oat or rice cereal with no sugar. Can't find the cereal products, so I head for the bread aisle, after 20 minutes of searching I find a brown rice bread, and grab it quickly from the shelf, I almost drop the bread on my foot, and fear that the weight of the bread might break something so I take a giant step backwards. I pick the bread off the floor and drop it into my cart feeling joyful that I have found at least one item on my list. I quickly head for the cashier, who chuckles at the weight of my bread, but I'm just relieved I have bread to eat for breakfast.

I take my bread proudly home, and read the label to be double sure there is notheing taboo in the bread. I discover that the bread is made with natural juices and I'm delighted, so I give it a taste. How would I describe it, there is no description for it. It almost tasted like flavored cardboard, and when it landed in my stomach you could almost hear it land with a "thump". I'm still thinking postive and decide that tomorrow I would toast it and add apple butter.

Well it's Sunday, my first day of this new diet. I wake up to my usual nausia and light headedness, but I'll be fine once I eat. I open up the plastic jar marked "medical food", and am shocked to see that the powdery substance resembles the color of baby poo (mustard yellow). And when I smell it I think to myself "oh this is bad", my rose colored glasses I often wear could not hide the truth that this "medical food" was going to be a challenge. So I open my freezer and took out the mangos and peaches that will surely cover up any bad taste that this mustard colored powder could have. I make my shake which now resembles baby poo in a blender, and I poor it into my glass. I take my first taste, and the look on my face had to show the disgust at this aweful stuff I had just took a sip of. There was no hiding the terrible taste of the baby poo colored powder, it was aweful! I tell myself "don't give up Michele, you can do this, remember it's a diet, you are the reigning queen of dieting, you can't let this stuff win". So I take two more sips, then my nausia soon overtakes any willpower I may have had, and I soon resemble Mount St. Helen's, up comes the "medical food" shake. So I lay down for about an hour.
I get up, still believing that I can still at least do the diet thing, I knew I could never put the "medical baby poo" in my mouth again. So I head for the kitchen with an "I can do this attitude", and proceed to toast the brown rice bread, and heat up water for my herbal tea. The tea is ready, I add stevia and the rice milk. I spread apple butter on the toast, and begin to eat my breakfast (if you could call it that). The tea is terrible, the sweetener is worse, my toast tastes like sweetened cardboard, and again Mt. St. Helens errupts, and I lose my breakfast to my porcelain lover.

I didn't need a brick to fall on my head to tell me that this diet wasn't going to work for me. There is no way my body could survive on this diet, but it does give me a new appreciation for what people with dietary issues go through daily. Now you may be wondering what I plan to do with my 5 lb. loaf of bread, I've made a list;
1.Make homes for the homeless using the bread as bricks, if they get hungry they can eat their home.
2. Carry it in the car or leave it on the side of my bed, and use it as a weapon.
3. Firemen could use it to break into houses, just throw it at any window.
4. Use it as a door stop.
5. Buy a second loaf and use it as a weight for weight lifting.
6. Use it as a paper weight.
7. Stack them along riverbanks to stop flooding.
I think you get the picture.
Hello milk and wheat, hola coffee and Chai latte tea, guten tag sugar and meat, I did miss you, even if it was only for an hour or two. I have a new appreciation for my delicious food. Good bye "diet food" may you never cross my path again!

Always inspired,
Michele

Survivor-Lakewood

2009-10-25T17:00:00.000-07:00

The show Survivor takes reality tv to new limits every week. This week we watched the 2nd contestant this season become too battered to continue playing and was sent to the hospital. As viewers we watch these people as they starve, shiver through rain and then compete in challenges the well fed and healthy would have trouble completing. But that's what the show Survivor is about; OUTWIT, OUTPLAY, OUTLAST! But often I feel I play my own Lakewood California version of the game.

Survivor Lakewood takes place every day in my little circle of life. Every day I plan my strategy to best get through my day. My immunity chalenge includes paying close attention to weather reports, making decisions of what I can and can't do, obeying my body when it begins to shows signs of weakening, diet, meds, clothing, and stress. They all play a huge role and poor planning could cost me days in bed. But a day planned well means a victory lap around my coffee table. Though on occasion POTS can be sneaky and blow me away even with the best planning.

Daily survival takes some work, and I've learned that I no longer sweat over the little things that come up in my life. People's opinions use to matter, now I just do my best and if it's not enough, it's their problem. I use to worry about a clean house, now I figure it'll get clean sooner or later. I was so good at worrying, that I thought about taking an add out in the paper and offering to take on other people'e worries! Now the serenity prayer makes more sense to me now than it ever did before, "God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. Living one day at a time, enjoying one moment at a time, accepting hardship as a pathway to peace. It's taking things one moment at a time, not worrying about what has happened in the past, and not fretting over what can happen in the future. Living one day at a time, and enjoying one moment at a time has made coping with this disease much easier. I cannot change this disease, but I can change my attitude about how I face it daily. I have noticed the symptoms are getting worse, but my appreciation for the things I can do have become stronger.

This disease has taught me to appreciate what great things I have in my life, and to enjoy every minute of the people and things that are in my life right now. They may not always be there in the future.

So, how would I do on Survivor Samoa, I wouldn't make it on the boat to the island, they'd probably have their first funeral at sea, boy imagine the tv ratings for that. Though I'm not sure how well those playing Survivor Samoa would do playing Survivor Lakewood.

Survivor Lakewood's motto; BE RESOURCEFUL, FLEXIBLE AND THANKFUL.

Always inspired,
Michele

The Dating Game

2009-10-25T13:39:00.000-07:00

I use to love watching "The Dating Game". There would always be some gorgeous hunka, hunka, burning love who would come onto the stage in his tight poly-me-ester pants and his shirt half unbuttoned with his list of questions to ask the three bombshells of his dreams sitting on tall stools to show off their mile long legs. After all the suggestive questions were finished and it was time for the guy to chose, I would stand up in my living room and yell, "Don't pick #3 she's an airhead!", but the guy would always pick the airhead, hmm maybe things would work for them after all. I can only imagine how things would go if they threw me onto one of those stools and I became bachelorette #3. Would I begin things with a bang as I threw-up while the stage was doing a 180 to show off the girls on the stools. Then would come the questions;

Hunk: "Bachelorette #1 what would be your dream date?" answer "Rock climbing in the grand Canyon"

Hunk "And #2 same question?" answer, "A bike ride on Santa Monica Beach."

Hunk "Bachelorette #3 same question?" answer, " A couch, a cool room, salty popcorn, a 1/2 gallon of water, and HBO"

Next round of questions, "Bachelorette #2 describe Bachelorette #3."

"Well, she has her head between her knees, she's a bit green from puking, her hands are purple, and I believe I see compression stockings peeking out of her jeans!"

Well you've got a good picture of my dating appeal. I've been on an online dating service for a while now, and filling out the profile questions honestly has been a challenge. Questions such as; "What do you like to do in your spare time?" Hmm I use to like to hike, bike, visit historical houses, sight seeing, exercise, and gardening. What do I write, I'm best when I'm laying on the couch watching tv. That's going to bring them in by the droves! And I love this question, describe yourself; I'm pale from lack of sunshine, purple hands, wear compression stockings, and I have an intimate relationship with my toilet, so if y0u're the jealous type, do not inquire. Now honestly I'm not always that bad, but the reality is there are many times I am. I'm not exactly what you would call "a great catch" if you're looking at me from the outside. I know I have some great qualities on the inside, but it's getting someone to look beyond my disease that's the hard part. I know it's hard to find a decent guy even if you don't have my medical issues.

I recently shared my dating concerns with a male co-worker, I asked him "Who would want to date a girl who spends most of her weekends in bed?" He chuckled and responded, "I can think of quit a few guys who would want to spend the weekend in bed with a gal!". We both chuckled, but as I was walking away, I had a smile on my face because......there may be hope for me after all! Now really that's not the kind of guy I want (hehehe), but there must be a nice Christian couch potato out there that will laugh at my bazaar jokes and doesn't mind sharing me with the toilet.

Transporter Malfunction

2009-10-22T17:45:00.000-07:00

Star date April 26, 2008. Destination Big Bear, altitude 7,000 feet, purpose of mission is to experience food, fellowship and fun! There must have been a transporter malfunction on the way to my destination, it's the only explanation for the unfamiliar body I have now. There must have been a very sick slug or maybe a rotten potato in the transporter room with me because the body I now have is slow and sick. Yes I admit it, I'm a Star trek fan, and proud of it.

I guess you could say I'm having an identity problem. I am not a SLUG! I struggle every day with this body that I don't recognize and refuse to except. The only problem is no matter how hard I try to tell myself that this new Michele is not real, my body reminds me that it is. This body with little energy, nausiated every morning, purple hands and feet, fatigue, heart palpitations, shortness of breath, heat intolerance and medications that are more like poison than healers.

What happened to the Michele I've grown accustom to over the past 48 years. Where did I go. Part of me was left in that transporter room. What happened to the Michele who could garden for hours, who loved to shop till I dropped, who could clean from dawn 'til dusk, who could hike with an attitude because those I was with couldn't keep up. Where is the woman who could watch one of my students soccer game in the sun and only worried about getting a sun burn. What happened to the Michele who loved being involved in an amazing ministry 3 days a week, what happened to being out 5 nights a week volunteering or at church. What happened to the full weekends? What happened to the woman who enjoyed being healthy and physically fit. Where did I go?

I am trying to adjust and accept this new and unfamiliar Michele. I'm just having trouble letting go of the old me, and just as I begin to adjust and accept this new me, a new symptom of this disease pops up and I have to start all over again. I do what I can, and I am thankful of what I can do. I have two amazing children who help me alot. I have some wonderful friends who stand by my side, I have a great job that I love, I still have all my body parts, and I don't have cancer. God is good, I see His miricles working in my life every day. I am amazed that I arrive to work so nausious I can barely stand it, but when my students walk in, I feel almost normal, then when the children leave the symptoms come back full force. I call it my working miracle.

There are some positive changes to my psyche since my diagnosis of POTS, I am more resourceful, patient, and thankful. Life is a waste if we don't learn from our experiences, and I'm going to try to learn as much from this experience as I can. In the mean time;

BEAM ME UP SCOTTY!

Always inspired,
Michele

Surprise Package

2009-10-17T12:05:00.000-07:00

Imagine you arrive home to find a giant gift on the table with your name on it. The package is beautiful, custom wrapped in your favorite color with a huge satin ribbon around it. You can't wait to open it, as you do, the anticipation mounts, you begin to imagine different items you have been wanting and hope to find in the package. You finally have the paper off, it's time to take the lid off the box, you remove the tissue, and there it is twelve rolls of toilet paper! That's right toilet paper, not quite what you were expecting? Maybe a little disappointed? You begin to think this must be a joke, maybe there's a gift card on the bottom of the box. Nope, toilet paper is all there is. Well, I often feel like that package. I look like fine on the outside cute sweater, nice jeans, great boots, hair done and make-up applied. My outer appearance hasn't changed since I was diagnosed with POTS (except I might be a little paler from lack of sun exposure), but I am not the same person on the inside as I was before the diagnosis, kind of like that toilet paper.

This week a favorite childhood song keeps replaying itself in my head and somewhat explains how looks can be deceiving. It's a "60's song called "Windy".

Who's tripping down the streets of the city?
Smiling at everybody she sees.
Who's reaching out to capture a moment?
Everyone knows it's Windy.

Windy appears to be a normal girl of the '60's, but could Windy have POTS? It's a possibility, she's tripping down the street. You may be saying come on Michele it's the '60's she was probably on drugs. Well, Michele is wearing her rose colored glasses and thinks Windy might have just been clumsy. Who knows why Windy was tripping down the street, but we do know she is friendly and spontaneous from her outer appearance in the song. Windy could easily be me, but I'm probably tripping down the street because of dizziness from POTS, I do try to smile at everyone I see, I figure if they don't smile back they're probably having a bad day (poor them). I try to make every moment count, because I know there's a posibility that I won't be able to do it tomorrow.

Looks can be deceiving, from the outside I look normal. I often get "Michele you look great today!", it's amazing what make-up can do for a gal, and there's a good chance I may barf on their shoes at any minute. They don't realize that my trip to church may be the only thing I'll do that day, because being there has worn me out and I'll have to spend the rest of the day in bed to recoup. While the rest of the world is planning what activities they are going to do for the rest of the day, my day is planned for me, "heigh-ho heigh-ho, it's of to bed I go!". For the longest time I felt deceptive, what do I say to those people that complement me on how good I look. I've learned to take the complement and only share how I really feel with those I'm close too.

My healthy appearance often gets me funny looks as I get out of my car while using the designated handycapped parking place. There are no outer signs informing people that I may pass out from heat intolerance on very hot days. Though the self concieous part of me would gladly wear a sign saying "HAVE POTS" (though that might draw some unexpected attention to myself) but I would wear it just so people wouldn't think poorly of me. Believe me, I dispise using the handicapped parking, I'd much rather take my old route of parking at the far end of the parking lot and get a little exercise while walking the extra distance.

The vane part of me is glad I don't look as bad as I feel, and to be honest if I looked as bad as I felt I wouldn't want the attention that would bring. As my Bob blog friend Michelle would say, I don't want anyone's pity. I just wish I felt as good as I look sometimes. Though I have to say in my kindergarten classroom, I could come into work, hair a mess, no make-up, and feeling aweful and my kindergarteners would honestly from their precious little hearts say "Mrs. McGough, you look beautiful." No matter how bad I feel, those sweet little darlings always put a smile on my face, and I forget how bad I feel on the inside.

Always inspired,
Michele

Good-bye Miss Independence

2009-10-14T17:57:00.000-07:00

This blog is dedicated to my dad who passed away September 28, 2009.

As I was growing up my dad would often have these sweet father daughter talks with me. In these talks he would stress to me " Michele, it would be nice to see you married some day but.... you never know what may happen in life, so you must learn to be independent!". Then different discussion topics would follow that line. I would be told of the importance of getting a good education, making good career choices that pay well, how to change a tire or the oil, the evils of credit and the list could go on but I'm sure you get the jist. I loved these talks, and was fortunate to have them follow me into adulthood. I would often get them in a letter, with newspaper clippings and his opinion on topics he thought I could use his advice on. Thanks dad!

Because I valued his opinion, and for the record I followed his advice. I went to college, and I have a good job that supports my family, and he was right, my husband left and I had to support my family on my own. I love being independent, and I'm glad I had my dad as a role model. I can't remember a time when my dad ever asked for help, you either do it yourself or pay someone to do it.

I can remember as a young mom trying to take on the roll of supermom. Work full time, clean house, dinner at 6:00 soccer/dance practice, attending college, laundry, try to be a good wife, I did it all. If I couldn't do it all in a day I would sleep less and catch up at night. I was exhausted but never asked for help. No wonder my husband left, he was probably bored because I was doing it all.

As far as I'm concerned no-one could do my stuff as well as I could. Asking for help in my eyes meant that I would have to admit that I can't do it all, and that I am a failure. I always felt that if you asked for help people would think you were a leach. A leach was surely something I had no desire to become. I'm sure you know the people I'm referring to, those people who ask for help and suck you dry. Offer them a hand and they'll take an arm, licking their lips and scanning your body for their next meal. I definately didn't want to be one of "those people". Finally, I didn't want to burden anyone else with my responsibilities.

Well God must have been looking down on me and laughing, because nothing was going to change my attitude. I often think God gave me POTS to rid me of my independent, prideful, self absorbed attitude. I needed an attitude adjustment, and getting POTS did just that. There are so many things I can't do on my own anymore, and I either ask for help or it doesn't get done.

Asking for help isn't as demeaning as I had envisioned it to be. I've learned that Miss Independence was often doing it all alone. Miss Independence was often tired and resentful. Asking for help means that I get to do things with people instead of alone. Getting help allows me to use my energy on my family instead of using it on exhausting tasks that have little value in the long run. I've learned that allowing others to help me makes them feel good , as I know I feel great when I help a friend, so why not ask.

I will say I'm not 100% on board yet, it's still very hard to ask for help. I've struggled with being pushed in a wheelchair at Disneyland, having meals made for me, asking my kids to help more around the house, having a co-worker put up my bulletin boards or getting help with grocery shopping. Grocery shopping has been the most difficult. My dad and I did the shopping together until I left my parents house at 23. I loved shopping with my dad, my dad and I had our biggest laughs while carting our groceries through the store. I loved when he would give his best chinese accent in the oriental food section, then quickly go into his Spanish accent as we passed by the tortillas. But since I've been diagnosed with POTS it is probably the most exhausting task I have now, but the one I'm least willing to give up. As I am writing this I believe I have the answer to this problem, I think I'll ask my darling daughter Megan to shop with me or maybe my handsome son Sean, maybe I can pass on some of those joyful experiences I had with my dad on one of them.

Good-bye Miss Independence, Hello Miss Dependent, life's tasks are meant to be shared!

Always inspired,
Michele

Gooood Morning!

2009-10-06T20:55:00.000-07:00

Good morning, good morning, rainbows are shining through. Good morning, good morning to you!

I love this song from my favorite musical "Singing in the Rain". In fact for years it was the song I would sing to my children to wake them up. I'm not sure my children have the same love for this song as I do. Their responses of moaning and covering of their heads with their blankets should be a no-brainer. I'm sure it wasn't my amazing voice that triggered this response ( I sing like a 5 year old) or maybe pure disgust over my cheerful mood. My families morning demeaner has always been totally oposite of mine, not my problem, I'm too busy singing to care!

I'm one of those people who love the mornings and can't wait to get out of bed and start my day.
I have always been a morning person, waking before the sun rises and taking great pride in getting things done before the rest of the world is out of bed. My average morning consisted of brewing my favorite coffee (raspberry chocolate from "It's a Grind") breakfast, quiet time with God, scouring of the bathroom and grocery shopping all done before 8:00. The rest of the day often followed the same pace.

I didn't realize a diagnosis of POTS (Postural Orthostatic Tachycardia Syndrome) would drastically change my blissful busy mornings. I should have seen the flashing warning signs when the doctor gave me a list of things I would need to change. They mainly consisted of morning activities. Some of the things on the discharge papers were:

* Bathing must be done at night.
* Rise slowly out of bed.
* Drink 1 quart of water or Gatorade before getting out of bed.
* Limit morning activities
* And my all time favorite! Drum roll please.....
Change bowel movement to later in the day.
Yes, you read that correctly. I didn't want to appear ignorant, but REALLY, REALLY!
Not quite sure how to manage that one.

Reality set in on the first morning home, I forgot I had POTS, and got straight out of bed (habits die hard), and found myself on the floor seeing only black and wondering what had happened. The rest of the morning was a nightmare. Not wanting another morning like the one before, I realized this was serious and decided to change my morning routine.

1. Wake up and wiggle hands and feet, do this for 5 minutes.
2. Slowly rise, wait another 5 minutes.
3. Sit on the edge of the bed about 5 minutes, a quarter of an hour has been wasted.
4. Drink very large glass of water even though I really really have to use the restroom.
5. Slowly get out of bed, feeling unsteady but I really need to use the restroom!
6. After my trip to the restroom, I sit at my computer to rest for 10 minutes.
7. I feed the anoying meowing cat, rest 5 minutes, another quarter hour passes by.
8. Make COFFEE! Rest another 5 minutes.
9. Make toast,too nausiated to eat anything else, rest another 5 minutes.
10. Do my hair (10 min.) another quarter hour has come and gone!
11. Quiet time prayer/Bible reading. Scheduled so I can rest in between the next thing (30 min.). 12. Get dressed, rest 5 minutes.
13. Can't go to work without make-up (10 min.)
I've been up a little over an hour and a half and I have accomplished very little.
14. I'm pooped, rest 10 minutes.
15. Make lunch, and gather things I need to take to work.
*Note to self can't forget the extra sweater the air will give me a chill,
and get the ice-vest for the heat later in the day.
16. Rest again.
17. Add extra time in case I lose my breakfast.

Out the door in 2 hours, it's a good thing I work 2 minutes away, if I had any kind of commute at all, I'd probably be out of a job! I know I'm lucky, some of my friends who have this disease can't work and would gladly go through this routine to be able to work again. And I totally think my new morning routine is worth it just to get to go to work and do what I love and have a passion for.

I so appreciate what I can do now, because I realize it can all be taken away at any minute. Life is precious, enjoy every minute, you never know when that one thing you love may be gone!

:)Michele

Fashionista has left the house

2009-09-29T16:49:00.000-07:00

For years I've enjoyed the ins and outs of fashion. I appreciate the "Project Runway" motto, "One day you're in, the next day you're out". My only purpose in watching the Emmy's Grammy's or Golden Globe, was to see who was wearing what and did they look good in it. Did they make a good fashion choice, or would they go down in fashion history as the woman wearing the swan dress for the rest of her life. Even God cares about clothing. In Exodus God told Moses what the priests should wear in His tabernacle, and how the clothing should be decorated as well. So why not have a healthy appreciation for design and fabric. I have always enjoyed shopping for trendy clothing that fits in my budget. If I couldn't afford the designer version, I would find a well made copy, and feel good about the money I saved.

So you may be wondering at this point what any of this has to do with Dysautonomia. Well..... before I was diagnosed with dysautonomia I enjoyed going on long shopping trips at the mall and keeping up with the latest trends and dressing up. Things have changed quite a bit since my diagnosis.

This Summer shopping is no longer something I can physically do without major planning. Since I'm heat intolerant and cannot be in temperatures over 75 degrees for more than a few minutes. All shopping trips have to be made in early morning or late evening. Since I am usually exhaused after 6:00pm evening shopping is out, and the malls usually are not open till 10:00 am so often a shopping trip in the morning is out as well because of the heat. Long distances are out because I get tired just walking across the parking lot. Forget about comparison shopping, I only have energy for one store, if they don't have what I want too bad for me.

This Summer I received a catalogue from one of my favorite stores. They were having their anniversary sale, and were opening at 8:00 am Woohoo my first outing in weeks. But before I could take this glorious trip to my favorite store I would have to make a plan of action. So here it is;

* Look through the catalogue for all items I want.

* Make a map of where items are in the store and the shortest distance from point A to point B.

* No deviating from the map! If I do;

a) I may not have the energy to complete the list.

b) I may not be able to get back to my car with the ability to drive home.

c) The store may have to call a wambulance because I've passed out from too much shopping.

* Plan where I'm going to park,

a) It must be shaded because I may pass out in the car if it's too warm inside.

b) Park close to the entrance, I may never make it inside if I pass out from exhausion before I
even get in.

* Hit the shoe department first it's right next to the entrance.

* Show the salesman the catelogue with the shoe, I'll be wasting energy looking for the shoe
myself.

* Try on the shoe, don't stand up I may get dizzy and be mistaken for being under the influence
and be escorted out of the store.

* Give the salesman my credit card, and ask for the transaction to be made on the salesfloor, too
tired to stand in line.

* Going up the escalator, hold on the vertical movement throws my heart into tachycardia!

* Quickly move aside for those aggressive anniversary shoppers and hold onto a railing till my
heart slows down to normal.

* I'm pooped, find a saleswoman to find one of the items in the catalogue.

* Found someone woohoo, and she happens to be a personal shopper.

* At this point I'm out of breath, and bless her heart she takes over.

* Personal shopper takes my catalogue and gets my sizes and walks me to a dressing room to
wait for her.

Normally at this point I would be taking great pleasure in choosing my garments, but now I'm just thankful that I might be able to complete all my shopping without an EMT being involved.

* I try on all items brought to me by my new best friend (personal shopper) with spuratic naps
on the most comfortable dressing bench I have ever layed my head on (which was none until
now).

* My new best friend (personal shopper) rings up my items while I'm napping on the dressing
room bench.

* Give new best friend (personal shopper) hug, and head downstairs.

* Relive previous trip on the escalator.

* Cover my face as I pass perfume counter, my new sensitivity to scents may cause breathing
issues, which would most likely be followed by all other dysautonomia symptoms. Avoid
EMT at all cost!

* Head for the car.

* Head for home.

* Bribe my children to bring in shopping bags.

* Take a nap.

* My body will probably pay for this trip for days.

I've come to realize that shopping is just too much work, and catalogue shopping can be almost as satisfying, but I will miss my new best friend (personal shopper). I wonder how she's doing.

Dysautonomia has also pushed my fashion savvy a bit. I've gone from donning my favorite designer, to donning an ice vest, compression stockings and a big black umbrella. I'm sure I'm quite the fashion statement during patriotic observance at my school. I can just hear the teachers in the staff lounge "Wow, did you see Michele in that fashion forward icevest, I wonder who designed it and if they have it in my size", NOT!

The icevest does have it's payoffs though. the other day one of my students gave me a big hug, and wouldn't let go. I tried to get her to let go and head into class, she said "ohhhhh do I have to Mrs. McGough, you're so cool!" Next thing I know half my class is trying to cool off by giving me a hug. Who says teaching doesn't pay!

.

What is normal?

2009-09-21T21:34:00.000-07:00

So what is normal? To answer that question I checked the Websters Dictionary, which states normal: not deviating from a norm, rule or principle: regular. Though I did like b: free from a mental disorder, sane. I now question whether I should continue writing bacause b could be a problem depending on which one of my friends or family you ask. So normal to me is what the average person experiences on a day to day basis. Anyone who has or is experiencing a disability of any sort realizes their loss of normality. In my blog I will share my dysautonomia normal compared with everyday normal.

How should I begin, I guess I'll start with something I miss alot, the beach. I love the beach, the cool breeze, the moist sand between my toes, the waves crashing and the water easing to the sands edge just hitting my ankles, the smell of salt, the warm sun on my shoulders, can you see it? I remember heading to the beach on a whim, no plans I would just take off and go. A beach trip now takes some planning for me, I can't go in the day, I have extreme heat intolerance, can't go alone, I may pass out just trying to walk from my car to the water, and if I do make it there's a good chance I'll be too tired to walk back. I know that if I really want to go somewhere special like the beach I have to ask those amazing people God has placed in my life to help me get to the places I really want to go. Before Dysautonomia I often experienced the beach alone, now I get to experience the amazing wonders of the beach with a few of my closest friends, who don't mind taking things a little slow. I'm beginning to learn that what feels like a curse could be a blessing in disguise.
Always inspired,
Michele

Dysautonomia Normal

Dizzy

Unpredictable POTSy Presents

Dysautonomia Normal is normal

I'm Melting!

The Elephant in the House

Doctors and Lawyers and Insurance companies, oh my!

Stress and Exercise

Frustrated!

Counting Sheep

Ms. Frankenstein

Virtual Vacation

The Ritz

Abs of Steel!

Mutant POTSy Malady

POTSy Monopoly

Article For a Friend

Party Leftovers

Happy Birthday-3 years with my new POTS "normal"

Another One Bites the Dust!

Super Teacher vs. Super Wimp!

POTS on the Prairie

What to Blame?

Droids and Apps

Ode to Compression Stockings II Energy zappers

Magic Eight Ball

Rose Colored Glasses

Ode to Compression Stockings

Out of Body Experience

0 to 70 in Less Than 60 Seconds

Totally Dysed

Happy New Year

Pajama Day

Merry Christmas

My BFF has a New Friend

Christmas Spirit

Computer Overload.

More

Fire Walker?

Hard Choices

POTS: Tornado warning!

Living the Moment

I'm a Super Freak, Super Freak, I'm super Freaky!

My Favorite Discoveries

HOT, Hot, hot!

"Normal" sick leads to coughing, barf fest and a side bar of piddle pup!

Experiencing "Normal"

Multi purpose POTS meds, from anidepressants to erectile dysfunction

Michael Jackson, Howard Hughes and Me!

Fear Factor Tachycardia/Bradycardia

The Happiest Place on Earth!

Stressed Test

No Parking

CyberVille to CreateVille

You Look Sick

If You Give a Mouse a Cookie/ If You Give Michele a Disease

Electric Cart/Bumper Car

The Push!

How does God want to use this battered body

Couch potato

Random Facts

The Fishbowl

Mystery Rooms of the ER

Spiderman has nothing like this!

Spa Treatment

Insurance & Peace of mind...NOT!

Pamper yourself

Friendship and Chronic Illness

Chronic Pain Drain

e doesn't=mc2, e=mom of two

Pray Without Ceasing

The Colors of Dysautonomia

Living out my defiant teens in my forties

Dysautonomia SUCKS!

No longer on the River DeNial

Teaching with P.O.T.S.

An ode to teacher's gifts

Driving Miss Michele

Energizer Bunny where are you?

The Chair