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.