But I think I'd rather deal with IF than this stupid mastocytosis. With IF, I could say to my fellow suffers... "My FsH shot up to 35" and they would understand exactly what I'm talking about. In IF, the medicine makes sense to me. In masto - it makes no sense to me whatsoever... at least not yet anyway and it's driving me mad!
It seems like this is a relatively "new" disease so I don't know that there is any set protocol in dealing with it. It seems that many of these sufferers just go into anaphalactic shock at the drop of a hat. In fact, that's how they discovered they had the disease. That scares the shit out of me. I've made sure that the people who sit near me during the day know how to use my epi pen and where I keep it but what if I'm alone or worse, alone with Dylan? I don't EVEN want to think about it.
Another thing that worries me about this is that there doesn't seem to be specialists for this disease except the ones who first identified it (and who are not in my area). I'm spoiled. I see specialists.
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