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,
Michele

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

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

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.

Inspired,
Michele

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

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

My favorite verses.

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.

Inspired,
Michele

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

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.
Michele

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

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
"http://www.youtube.com/embed/85mgifwuYTs"
That song just wouldn't leave and by the time I finished playing that song in my head I was in my happy place and the MRI was over.

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

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

Inspired, Michele

Psalm 16:1

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

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.

Inspired,
Michele

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

Frustrated!

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

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

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

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


Inspired,
Michele

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