Crisis: Recovery

Ok, so being one big ball of ALLERGIC is really fraying to one’s nerves.

Obviously.

ANAPHYLAXIS DAY 2017

I am not a fan of hospital selfies.

Really, I kind of just shared that one to make you laugh. (Go ahead, it’s ok!)

I look SUPREMELY pathetic.

What’s funny is, I asked my mom to take my picture  in order to send it to my sister so that she would know that I was ok post-Epi-pen. I was insistent that sending my sister a picture of my smiling face would be reassuring.

AHAHAHAHAHA.

Are you reassured by that picture?

Yeah, neither was she.

But don’t worry, I laughed when I first saw it too. So much so, I had a huge coughing fit and attracted nurse attention.

Lesson learned: There is nothing reassuring about a post-Epi hospital selfie.

Moving on.

Or at least trying to…

I have been trying so, so hard to move on from being a reactive mess. It has been nearly 2 whole weeks. I feel like everything should be totes norms again or whatevs the kids are saying these days.

Except, I keep reacting to stuff.

Nothing like Monday, I’ll be clear about that. No Epi has been involved; however large quantities of antihistamines and steroids have been.

Quick backstory: I have Mast Cell Activation Disorder (MCAD), which I just realized is not in my explanatory “What’s POTS” page, so as soon as I’m done here, I will go update that. Whoopsie. There’s a lot to explain and keep up with. Sorry. Anyway.

Everyone has mast cells. There are a part of your immune system. When you have an allergic reaction, your mast cells multiply very quickly, like a huge army assembling to attack the invader. If you have MCAD, your mast cells get “activated” for a whole lot more than they should. Personally, if I am in a reactive/symptomatic phase, even if you hug me too tight or too long, my skin will get hot, red and itchy because the pressure is enough to trigger my overzealous immuno-army. The doctor who diagnosed me loved that I was such a perfect “teaching case” because he could run his pencil eraser down my arm, have a red line of tiny hives immediately pop up and remain, and then show off how mast cells work to his colleagues, medical assistants, nurses, receptionist, and whoever else was in a 10-foot radius.

Um, you’re welcome?

In addition to ducking out from weird huggers (they are out there, and I’m sorry, I like you as a person, promise- you just hug weird!), I also avoid trying on clothes (shopping is literally painful), wearing clothes that are too tight (compression stockings nonwithstanding), and brushing up against anything lightly (which is a strange sensation that produces AGONY).

The point of sharing all of this is to say that I am incredibly used to being allergic and allergic-type sensitive and reactive in its many, many forms.

I’ve just never had quite such a time with food before.

Usually all my food related problems are questions of digestion. I haven’t really been able to get that far lately though.

Clearly, when I had my severe reaction to whatever (still haven’t eaten strawberries, eggs, or oats since that morning. Also no fertilizer…I think…?), it woke up the Mast Cell Army that lives in my mouth.

In the past 2 weeks, I have had weird mouth reactions to:

Food that is cold.

Food that is hot.

Food that was fine to eat this morning, but not this afternoon.

Anything eaten when I’m tired.

So, you know, like a bunch of reactions that make total logical sense that I can then show as evidence to a medical professional who will look at it, see a pattern, and say, “Oh, no worries, you have a really straightforward case of _____.”

As per usual.

These “weird reactions” have included, but not been limited to: coughing, red burning dots on the sides of my tongue, redness around my mouth, and a feeling of fullness. Thankfully, I’ve always been able to swallow, and have had no choking.

It’s gotten so much better now that my prednisone taper is done and I’ve had a steady stream of antihistamines pumped into me.

But still.

Recovery is a journey, not a destination.

Apparently, I’m on the scenic route.

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