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for aimee - you're a bit ahead of me Jun. 9th, 2005 12:40am
Hey Aimee!
I wish I was as brave as you! I used to get really angry at every new doctor I had to teach about LOCAH, and while I no longer get angry I still don't like it. I guess maybe the next step in that arena is looking at like a public awareness project and a service to their other patients. Maybe I'd feel better about it if I looked at it that way. On the other hand, I'm always really happy when I see a new doctor who knows what CAH and LOCAH are, and I don't have to explain it at all!
I'm very private about my LOCAH. Since I started on dex - and since I had gotten so sick before starting steroids and having problems with my immune system, both before dex and then after when I didn't stress dose when ill - I do the medic alert thing. I wore a bracelet first. People I barely knew would demand to know why I was wearing it, and all I could think of is "My health is none of your business." So I switched to a necklace which isn't as obvious. However, people I knew a little better would ask and I found it was a great opportunity to finally try to explain it a little bit to some of my friends. I mean, I'd talked about it some with my very closest friends, but never to anyone else. I read a lot on the board about what people have said to explain it, and started trying it out. It was kind of my "coming out." Again, maybe my next step is to put that bracelet back on and start answering those other peoples' questions.
As far as the woman at Dunkin Donuts - that's the one are I don't do too bad in. I don't know if I would have said anything in that particular situation, but I have talked to complete strangers about it when it seems they may have some of the same issues going on. Invariably they've never heard of it. But I only do it if I can talk to them privately - I don't want them to be embarrassed about it. I try to tell them which tests to ask their doctor about, and how to find an endocrinologist. Even if it's just PCOS and not LOCAH, a good endo can be of great help.
My hair problem got A LOT better on dex - I had a really hairy stomach, for example, and almost all of it fell out. My face and neck are better, I don't have to shave my legs twice a day, and my arms aren't as bad either. My dad's a hairy guy, and I had more hair than him. The facial acne was never that bad for me, but body acne has been particularly on my arms and legs, and that has been a lot better on dex. But one of the things that started happening as my LOCAH got worse a few years ago is I'd get severe acne breakouts all over my stomach. Even my endo called in the other docs to look at it - they'd never seen it so bad when localized. Haven't heard much anywhere on the board about belly acne and am not even sure it is the LOCAH after all. Perhaps its just coincidence that it popped up as my bloodwork showed a dramatic difference. That belly acne has only been slightly improved while on dex.
