How does one begin one’s story? A story that spans decades yet seemingly only started a few years ago? A story with so many alphabet soup diagnoses that it confuses even medical personnel? A story that exposes vulnerabilities and rubs salt in wounds that are still raw? How does one convey the emotions? Where does one find the words?…
No matter what I did it seemed as if there was no middle ground when I went to a doctor’s office. I was either too broken and they couldn’t handle the amount of ailments that I had, or I wasn’t broken enough and everything was apparently normal. Which was I? Completely broken or completely normal? Because surely I couldn’t be both…but for years apparently I was. I was accruing diagnoses like some people collect souvenirs. Carpal tunnel. Cubital tunnel. Postpartum depression. Anxiety. Whiplash Syndrome. Kyphosis. TMJ. Migraines. Fibromyalgia. Peripheral Neuropathy. Tinnitus. The list goes on and on. How could I possibly have this many things wrong with me and yet how could no one help me? I was only in my early thirties.
Ever since I was a teenager I’ve wanted a tattoo. I’m not sure why because I’m quite needle phobic (which is hilarious considering the amount of injections I get every month at this point), but something about the permanency of a tattoo has always drawn me towards them.
I often get asked, “Why do you call yourself a zebra?” In medical school students are taught that, “If you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual diagnosis, and nine times out of ten that works. Unfortunately for those of us in the number ten slot that leaves us searching for answers for years.
POTS is a form of Dysautonomia. Dysautonomia is a large umbrella term for a collection of diseases in where the autonomic nervous system does not function properly. The autonomic nervous system is a bit important because that is the part of the nervous system that is controlled automatically (think heart rate, breathing, blood pressure, etc).
MCAS stands for Mast Cell Activation Syndrome. If I don’t want people edging away from the crazy lady I simply tell them that MCAS means I’m allergic to life. Pretty much anything can set off any type of reaction in my body, some triggers I know, many I don’t and I leave it there.
Yet another acronym to add to my already long list of chronic illnesses. This one is a misnomer though. A mTBI is short for a Mild Traumatic Brain Injury. Unfortunately there really is no “mild” brain injury. When a brain is injured describing it as mild is a misnomer because a brain injury is always serious, and that is something that many people don’t realize.
It would be hard to describe the tumult of emotions that were running through me one seemingly innocuous Thursday afternoon. If I had to describe it I’d say it was a combination of the joy of Christmas morning, the uncertainty of the unknown, the hope of freedom, the trepidation of erring, plus so much more. And it was all due to one tiny, furry, four-legged bundle of cuteness. My future hopeful service puppy, Ace.