Saturday, November 5, 2011


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.


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

Sunday, October 9, 2011

Unpredictable POTSy Presents

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,

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.

Saturday, September 17, 2011

Dysautonomia Normal is normal

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.


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.

Saturday, August 27, 2011

I'm Melting!

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.


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.

Sunday, August 14, 2011

The Elephant in the House

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.

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.

Thursday, July 28, 2011

Doctors and Lawyers and Insurance companies, oh my!

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
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.

Tuesday, July 19, 2011

Stress and Exercise

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.


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.


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).


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.

Sunday, July 17, 2011

Counting Sheep

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.


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

Wednesday, July 6, 2011

Ms. Frankenstein

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. 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!


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.

Friday, July 1, 2011

Virtual Vacation

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.


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

Thursday, June 23, 2011

The Ritz

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.


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!

Sunday, June 12, 2011

Abs of Steel!

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.


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.

Tuesday, May 31, 2011

Mutant POTSy Malady

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.


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

Monday, May 30, 2011

POTSy Monopoly

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.


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

Wednesday, May 25, 2011

Article For a Friend

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.

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
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

Source: Chelsea Therapeutics 2011 GlobeNewswire, Inc.

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


Saturday, May 21, 2011

Party Leftovers

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!


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

Saturday, April 30, 2011

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

*Dropping heart rate-check
*Rising BP-check
*Short of breath-check
*Blurred vision-check
*Brain fog-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.


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

Monday, April 18, 2011

Another One Bites the Dust!

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.


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!

Saturday, April 2, 2011

Super Teacher vs. Super Wimp!

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;

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.

Now compare this with this mornings trip to the mall.

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.

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.

Sunday, March 27, 2011

POTS on the Prairie

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.


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."

Tuesday, March 22, 2011

What to Blame?

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,

Saturday, March 12, 2011

Droids and Apps

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),

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

Wednesday, March 9, 2011

Ode to Compression Stockings II Energy zappers

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,

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!

Saturday, March 5, 2011

Magic Eight Ball

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!",

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

Monday, February 14, 2011

Rose Colored Glasses

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!


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.

Friday, January 28, 2011

Ode to Compression Stockings

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!


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

Sunday, January 23, 2011

Out of Body Experience

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.


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.

Sunday, January 16, 2011

0 to 70 in Less Than 60 Seconds

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"

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.