Proof that it's not all in my head: Mast Cell Activation Disorder

It finally, FINALLY happened.

Two days ago I was diagnosed with a condition that explains EVERYTHING. Why I react to crazily small amounts of things, all the time, and have to take so much care or the whole world falls apart.  I have a somewhat rare condition known as Mast Cell Activation Disorder.

I went into the doctor's office not expecting much of anything. I'd received a call that the tests were negative, and then I'd made an appointment to see this doctor anyway, to discuss the results (she'd suggested such a thing at my first appointment). I was thinking I'd be asking about what new things she might suggest I could look into, if any. If she might have some possible idea of where I could go from here.

Instead, she told me I did not have one of the conditions she tested for, but I DID have the other.
I was so floored. I'm sad and upset and giddy and excited all at once. I don't want to have this; it is not a fun condition to have, and it's going to be yet another long round of learning and keeping track of things and being careful. And there is no magic pill, no cure for this. I will always be sensitive to crazily small amounts of things and I will always be vulnerable to reacting at the drop of a hat.

A change in diet may help, some drugs may help (they have to play with them a bit to see), and I now have a better idea of what may trigger an allergic response so I can avoid them more easily, and so feel better, I think.

So there IS good. And, as I have been saying for literally YEARS, it is NOT in my head. It is not hypochondria, not a subconscious desire to stay sick, not anxiety or stress or any of the dozen 'reasons' for my illness that assumed I could not possibly react as I thought I was reacting. I cannot tell you the relief to not only know what this is finally, but to also have something to back me up. Something to remind me that my constant assertions of sanity, which on bad days even I sometimes had a hard time believing, were dead on.

Although to be honest, what I'm going to be looking at certainly feels a bit crazy. :-P

Basically, my body's mast cells trigger an allergic reaction, flooding my body with histamines or whatever else they release (I'm still learning here), when they shouldn't. So I am actually not allergic to all that much, but I DO have an allergic reaction to all sorts of things. Folks with this condition can have an allergic reaction triggered by food (often), by smells, by chemicals or preservatives (like sulfites), and by hay fever type allergens too. And THEN...the mast cells can be be triggered by heat, or cold, or getting a virus, or even stress or other emotions.

So, yeah...that sounds pretty crazy. Sorry, I need my epi-pen because I got exposed to too much hot water in the shower. 0.o And I'm not joking. That could happen to some folks who have this!  As much as I've been trying to puzzle out why I react, and have found many things that made me feel terrible, I must admit that I was never looking to see if getting too hot, or too cold, or even catching a cold was making me have an allergic reaction, too.

Which, by the way, I get to do now. I get to make a 'trigger' journal to see if I can figure out what makes me react. I feel like I've got a bit of a head start on that, considering what I avoid now in order to feel better. But there's going to be a ways to go.

I'll be putting up a bit of information here as I figure things out, because folks with this condition can use all the support they can get, from what I can see!