Quote:
Originally Posted by posey  before I knew what was going on with me I colored my hair figuring I'd kill whatever was on my head.
To my horror, the feeling didn't stop and what I once thought might be turning gray din not color but STAYED WHITE.
These were the ones that moved, literally stood up straight, and twisted themselves around hairs on my head. It made me think of hyphae which fungus grows. I did some research and sure enough, hyphae stand up and sway back and forth looking for food, MY HAIR.
Needless to say, I have had my head shaved for about 2+ months now. I won't grow my hair back until and if there ever is a cure for this. I started to check the rest of my body and, well you can take it from there. I don't want to get to far into it, I had a few days this week I wanted to die. I even asked my husband to shoot me. I knew he wouldn't but I guess it felt good to say.
posey |
As hard as it probably was for you to write this, I am so thankful you did. So far ALL of my symptoms are pretty much visible, all but the hair moving thing, but not one I've ever wanted to mention seeing that I'm already supposedly crazy, this one would just verify it for the ones around me if I ever spoke of it out loud. I'm in my 30's, hadn't had grey hair yet, but i've always bleached my roots, so I thought maybe I just hadn't noticed them. In the height of my beginning episodes, i bleached my roots, and it scared the bejeezus out of me. all my hair follicles were bubbling and very open, it's hard to explain, but it almost seemed like my scalp had an empty layer underneath the skin that was open and sucking the white bleach down into it. i felt i had pissed something off, so i no longer bleach my hair. my hair also broke off a good 6 to 8 inches and seemed to completely stop growing. I moved and things seemed to get better, after about a year and a half my hair finally started to grow again with my naturally dark roots. and now you can see that every lesion on my scalp is completely circled by the white hairs. there is an absolute pattern to them. but the worst part has been, even during the times i have felt in 75% remission, certain places I go, I literally feel the hairs lift and raise and move. I haven't really pin-pointed what all the areas have in common yet. although, if I am near anything with mold, or water damage, it is extremely intense. Tonight, like a dummy, we went to the second hand store and now I feel like I have a million antennae sprouted and doing a simultaneous radar dance on my head. especially the ones under 2 inches they really do stand straight up. other times, I sit there and watch one hair bounce up and down, like something is running up and down it. on a side note, i have naturally curly/kinky hair, which since growing again is coming out stick straight. when i try to curl it my hair stinks something terrible, especially when i re-wet it. ewww, it's gross. But i too, every other day just want to die. I am afraid of my own body, I don't touch it, I try not to bother it, it does not feel like my own. I am a single mom, both of my last two boyfriends, one 28, and one 34 died in their sleep, which makes me feel like hmmm! 2 of my 3 cats have died, one of which chewed all her hair off the back end of her body. my only positive thought each day is I have to make it 4 more years so that my son can take care of himself and then I can just sleep forever. Until then, my Sane brain is trapped in its own prison called my body. Thanks again
March 24th, 2009, 12:39 PM
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