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01 August 2008

OK, now I'm officially WTF. So, as it turns out, I have this rare syndrome. [More:]I was born with it, and I'm 33 so I'm pretty used to the "symptoms," but I never anticipated they could get worse. I also didn't think I had to be particularly careful about my physical activity. Now that I have a name for the syndrome, I'm scaring myself half to death through Google. People don't die from this but they sure as hell suffer. It's a little unnerving to see into your possible future. The weird thing is that I'm less concerned for myself than for my (soon-to-be) husband, because if something happens, he's going to be the one who has to take care of me.

I know this post seems like "feel sorry for me" but it's not, at all. I just need somewhere to express my own fear without scaring the hell out of my family and friends. I'm known as the tough, resilient one and it scares them half to death when I'm scared.
As with all things, you will develop a coping mechanism.
posted by netbros 01 August | 10:15
Stay strong, desjardins. Chin up.
posted by Hugh Janus 01 August | 10:18
Of course you are scared and that's ok and sensible. (hugs) At least you are now confronting a known fear. After you finish scaring yourself with Google, the reslilient one will kick back in and make a plan.

You don't come of as "feel sorry for me" at all, but I do feel for you and your situation.
posted by rainbaby 01 August | 10:26
At least you know what it is, which is huge.
You may want to find a support group to get a better idea of the situation.
The googling can be almost worse than people who want to trade medical war stories.
posted by ethylene 01 August | 10:38
Google can be your friend too. I've found lots of help and support through googling various health things I've had, particularly psoriasis, which I've had since I was a child.

Take good care, desjardins.
posted by essexjan 01 August | 10:55
seconding support groups- they've been awesome for my friends.

(If nothing else, they let you indulge in black humor about your condition that will appall your friends and family.)
posted by small_ruminant 01 August | 11:21
Also- you will get a heads up on the newest therapies- often before your MD does.
posted by small_ruminant 01 August | 11:22
when i was 26, i developed alopecia in a small area in the back of my head. basically i was stressed out to such a point that my own body was attacking itself.

you couldn't even see it, it was a small bald spot the size of a dime on the back of my head and clearly other long hair covered it. i had to go to the doctor twice a month and get about 20 steroid shots into my head all over to stimulate hair growth.

after diagnosis, i spent the whole next week looking up alopecia and scarring myself into hysterical sobs over the fear that i would soon be losing all my hair and THERE WAS NO CURE... i'm sure it's traumatic for men, but as a 26 year old woman, i was sure that my life was pretty much over as a dating female simply because i was losing my hair.

i scarred myself so much it did indeed get a tiny bit worse, but no one by me would have thought so.

it went away completely two months later but i still counted the hairs in my sink and shower for another year after that, paranoid it would return.

ten years later i realize that the freaking over it was much worse - and made it worse - than the little spot i had developed. i had caused my problem to be worse by the stress of stressing it, instead of just trying to relax, take care of myself and go with the flow.

:) kisses and sending you a high-five to go with the flow.
posted by eatdonuts 01 August | 11:42
*scaring - damn fast type.
posted by eatdonuts 01 August | 11:44
OK, I've stopped googling and I'm going to work on addressing wedding invitations if I can get off this damned computer.
posted by desjardins 01 August | 13:32
Good for you. I get seriously OCD about Googling things sometimes, especially health concerns. It's bizarrely compelling.

Side note: A friend of mine actually had her husband set up a timer that shuts her computer down after she's been online more than 90 minutes. She was chatting and browsing instead of eating and sleeping.

Worse, I completely understand her.
posted by small_ruminant 01 August | 13:50

My family learned this the hard way. My mom was diagnosed two years ago with a type of pulmonary disease that affects two people out of a million. The googling -- it convinced us all that she was going to die within months.

There's a lot of hysterical and inaccurate information on websites. Do not read them. They do not help.

Find an online support group. You'll learn the ups and downs and ins and outs from other people who share your disease. It won't all be good news, but a lot of it will. And you'll find out that you're a lot better off than a lot of others, which is invaluable. It will give you a much, much more realistic base of information.

Good luck. Stay healthy.
posted by mudpuppie 01 August | 13:51
Googling health issues bad. I've scared myself many times over.
posted by ThePinkSuperhero 01 August | 14:32
Googling health issues bad. I've scared myself many times over.

Me, too. I know it's hard to resist though.

desjardins, I feel for you. Try to stay positive. Wishes for good health and happiness.
posted by LoriFLA 01 August | 18:13
I also agree with support groups. You'll find people who know exactly what you're feeling, and being able to share your feelings make your condition less scary. That said, give yourself a hug and a break from Google, and get started on those wedding invitations!!!
posted by redvixen 01 August | 18:21
forget the wedding invites, hee, start the thank you notes! i still have three damn notes more than a month later... just saying. ;)
posted by eatdonuts 01 August | 20:54
Jesus Christ. || Bunny! OMG!