Rare Disease Awareness Day Entry #1: Preamble and the Current State of Things

Yo. A writer decides to write - and show off a gross, fat, stinky selfie

...so today is Rare Disease Day, which is a day to promote awareness for the weird little disorders that you see on TLC specials or read about in a Facebook forward between memes. Some are rare because they are new; others are not common due to their genetic nature. All are misfits in medical science, and most people that suffer from any one of them have facets to their diseases that people that suffer from more common disorders simply do not have to think about.

Mast Cell Activation Syndrome (MCAS) is currently classified as a rare disease due to its newness. It was finally named as a condition in 2007 and given official diagnostic criteria in 2010. It is hypothesized that it is far more widespread than the data currently reflect. Seeking treatment and care for a disorder that is this new is difficult at best - and life-threatening at worst.

When I saw the #ShowYourRare tag I was kinda iffy on doing anything about it. It's my first year with this diagnosis on this day, and I sometimes already feel woefully overexposed with what I share. I remind myself, though, how many people have contacted me over the years about things I have written, particularly about my health, to tell me what they have learned about themselves and others. To them, then, I dedicate the little project I'm going to do today.

Since I'm in the middle of a flare anyway (about three weeks now) I've decided to do a day diary on Facebook to try to show you a real, honest day in the life of MCAS. It's not gonna be pretty, but it's not all gonna be terrible and pitiful and angsty, either. There are good things I can share. It will be honest, though, which is what I value most. At the end of the day I plan on doing blog posts with the material I put here plus whatever embellishment I feel is needed.

Let's start with this picture: me at midnight. I'm on my couch, where I've pretty much lived and slept for the last three weeks because the trip to the bed and back was actually too strenuous for me after the first ER run. Now it is simply easier to maintain/attempt health and cleanliness from one spot. My bed currently holds the clean clothes that I cannot hang up right now. Good news, though - I'm sitting up here and currently not flushed from my mast cells going apeshit! Speaking of cleanliness, though, I haven't showered since... Thursday? That's because a shower can easily throw me into an emergency situation. I already only take cold showers because heat is a HUGE mast cell trigger for me (it's opposite for some), but right now even the pressure of the water on my skin will trigger a reaction so that I'm actually sweaty, hot, dizzy, and maybe a little itchy and tight in the lungs when I step out of the shower. That action can be the difference between an epipen or not - or an ER run or not.

...so here I am in my stinky glory. Be thankful there is no smell feature. I'll be up for a while - starting another bout with dexamethasone, my steroid, and that generally means little to no sleep among other things.

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