Piecing it together

Well, this has certainly been a strange year for me and weird medical problems (may I remind you of my one week of temporary paralysis, following a chiropractor visit back in May).

It turns out that, apparently, my last post announcing that I’d been diagnosed with mast cell activation syndrome may have been a bit premature.

For some reason, during my first visit with my new allergist at Beth Israel (one of the major medical centers in Boston), I’d gotten the impression that my diagnosis was absolute.

However, I’ve since met with her two other times, and apparently my clinical picture is not as clear-cut as it had seemed at the first visit.  (Or, perhaps I misunderstood something at that first visit when I was busy trying not to burst into tears).

Things are a bit more calm now for me, and I’m starting to piece a lot more of the facts together.

I thought I’d share them with you here.  Although I’m really upset that any of this happened, in a way I am proud of myself for the way I handled it.

As some of you know, part of what took me so long to recover from SI joint dysfunction was the fact that I didn’t believe in myself; didn’t believe that there were answers out there for me.

So when I got “I don’t know” for an answer from a doctor or a PT, I sort of internalized that as a reflection on me.   That I had a “weird” problem, one that no one else could understand.  So I’d let a lot of time go by after one thing failed, before trying something new.

I’ve learned from that experience, though, and now I am like a totally different person.

For now I will spare you the details of some of the indignities I’ve faced.  Other to say that, because some of my symptoms have been atypical and don’t necessarily fit the classic signs of an allergic emergency, people have been downright rude to me.  By this, I mean emergency room staff and even…. quite surprisingly, my new primary care doctor, who I had really liked.

But I stuck it out.  I had my regular allergist at a small local medical center near me who believed that something really was going on with me, but that it was a bit more than she had the tools to diagnose.  (That’s why she referred me to BI).

And the more I’ve met with specialists– the allergist and also two dermatologist, because a lot of my symptoms have involved strange rashes/hives/things going on with my skin– the more I’ve been affirmed.

The same spots the ER doctor told me were “nothing,” all three of the specialists confirmed to be hives.  It’s just that they can look different, on different people.

This has really just been such a brutal time.  I don’t understand why people would treat me with suspicion.  After all, it’s not like allergic reactions come with any fun drugs.  It’s not as if I’d gone in there asking for painkillers (although I would of course still be upset at being treated this way, and rightly so).

But allergies?  I don’t know.  I don’t get it.

Right now, though, I can’t control other people.  I can only control myself.

So right now I’m trying to take control of the situation as much as I can.

Part of the uncertainty, I realized, may come from the fact that there’s a disconnect between dermatology and allergy.

While I technically have “hives,” hives are not always a sign of a dangerous allergic reaction.  I’ve been learning that sometimes they can also be part of a much smaller chemical signalling pathway that has only to do with the skin.  So, while I may still have mast cell, it’s been a huge relief to know I don’t have to freak out every time I scratch an itch and end up with a hive (this is part of a non-dangerous condition called dermatographia).

So I’ll be going back this week, to dermatology and allergy.  I’m going to ask my doctors to communicate with each other about what they’ve found.

And maybe I don’t have mast cell activation syndrome.  It’s still too soon to say for sure.

But right now I am proud of myself because this time around, I’ve internalized nothing.

If those ER doctors don’t get it, well, forget them.

At least that’s the one good thing that’s come out of this, as well as my weird chiropractor paralysis episode.

A younger me would have thought there’s something wrong with me, for having problems other people don’t understand.

Now nothing slows me down.  When people dismiss me, I bounce back and fight harder.

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