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Currently (2020) my most updated blog is pinkfeldspar.

Spaz is a useful side blog for sorting other stuff out.

Monday, August 25, 2014

autoimmune reaction disorder

I'm one of those lucky people who gets to carry a bottle of prednisone and an EpiPen pack around with me everywhere I go and then never uses them because I'm so freaked out by everything around me possibly causing death that I'm terrified of touching or eating stuff and generally slam a handful of chewable benadryls and make it to a clinic within enough time to get supervised treatment. My nearest clinic is 10 miles away and isn't even open to walk ins most of the time, so I wind up driving about 20 miles. My worst year, yes, I did call an ambulance and got emergency breathing treatment in my driveway because I had a bad reaction to my inhaler. We didn't know at the time I'm allergic to the propellent, but my doctor switched me to a different inhaler after that.

I'm also freaked out by allergy meds in general. Zyrtec, for example. When an allergy doctor tells you to take 2 of them twice a day forever, you go full blown zombie. By week three my regular doctor was disturbed enough by my behavior changes that he pulled me off it. I also weep when I use Flonase. I have no idea why, but one dose of that up my nose, while wonderful for my nose, induces such severe depression that the world stops point blank and I'm on the couch in a ball hugging a box of kleenex. These are just examples.

Diphenhydramine is my best friend. "May cause excitability." I'm one of those people who doesn't feel sleepy on Benadryl. I get really tired of it, though, so I take breaks. Taking a break at the height of ragweed season probably wasn't a good idea. I play a balancing act with my histamine levels (yes, I'm acutely aware of them)- if I stay in my house and don't do anything that will upset the balance, I can hold the benadryl down to a very low maintenance dosage (I know, benadryl isn't a 'maintenance' allergy med), sometimes just one chewable tablet every 12 hours. Of course, stuffing my face on a bowlful of yummy stuff I hadn't eaten in months and forgot was questionable wound up being a ridiculous slam through intravenous steroid the other day, and then a weekend of nerve-racking prednisone. THAT is the kind of thing the high zyrtec forever dose was intended to prevent. I'm not really allergic, per se, like the zillion things I react to don't show up on allergy testing, but since my body responds so thrillingly, I've been tagged as having an autoimmune reaction disorder, which can be every bit as life threatening as a real allergy. Most people diagnosed with that just do the rash/hives thing as a sort of lifestyle. I completely skip that and go straight to airway.

My biggest fear is that one day I'll start having reactions to the meds that are supposed to control the reactions... I try not to think about it. Once in awhile I entertain the notion that I'll ironically croak off from cytokine storm, having lived past several other things that could have killed me by now. If I ever suddenly disappear and never come back, just assume that happened. I know I've disappeared off the internet before, but I'm hoping I'm back for good because apparently keeping in touch with the outside world via keyboard has been so good for my depression that I gleefully get to skip head meds and not risk having more reactions to more pills, yay!

The point to writing this out is so I can get it out of my brain and get on with my day. If you are a 'canary in a coalmine' person, you're not alone. Consider this your virtual hug. I'm sorry it sucks, but distraction is awesome, so go find some!