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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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08-09-2013, 09:16 AM | #21 | ||
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Elder
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Alopecia is awful mentally. I had hair down to my waist. Caught a virus that put me in the ER. While there my body tingled, and so did every hair on my head. My hair fell out in clumps, to where my bed had to be vacumned. I went to some 20 doctors to find out what was wrong. It took Mayo clinic to make the DX. I became bald in under six weeks. Mayo got me into a trial study, as my health went south at the same time. I took a form of chemo for almost 9 years at columbia university med. center. Only three places at that time in the country would even try. The T @ B lymphocytes that normally attack colds, flu, virus, are all out fighting, but they forget who they are fighting and attack me as a foreign object. In the ball park of lupus, in which I am carefully watched.
In florida. You cannot wear a wig. The synthetics literally melt on your head, and are so hot it makes you sick. So I wear my version of a biker look, called a doo rag. I make them out of old t shirts, to match my outfits. Yeh I look like a baby bird, trying to get feathers but not doing so good at it. I do get my hair back now and then, but the same hair loss happens over and over again, all my life. The times I do get it back, I love to feel the wind in my hair on the beach. I revel in each day I get to keep it. I look normal, and I am not shunned. In stores for example, I am followed, as I wear this biker type hat on my head. I am assumed to be a criminal over my looks. Men shun me too, as they are visual, and do not select women, even if they are OK in looks, just over the hair issue. My housemate..., I had hair in Feb. of this year when I met him. First thing I did was tell him this would happen. It did, and he is very accepting, and non judging.. However, I have to hide my head to feel comfortable, and lose my privacy to go "Uncovered" This is one of 5 auto immune conditions I have. So that's the story on this particular condition. I would not wish it on my worst enemy for what it does to you emotionally. I hope your hair comes back naturally, and that it is just stress. This is the first time I actually talked about this condition here on NT. ginnie |
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"Thanks for this!" says: | Djhasty (08-15-2013) |
08-09-2013, 10:07 AM | #22 | ||
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Senior Member
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Ginnie, you are one brave woman and you should be very proud of yourself That is a horrible condition to live with for so long. It's stupid how much emphasis is put on women's looks - it's like any disability, you become that disability is so many people's eyes and lose your own identity.
I've seen quite a few people with doo-rags, and always thought they looked quite cool and stylish. A friend of mine had cancer a while ago and she wore them whenever she went out as she too hated the bitty hair look. People with such shallow opinions should be ignored, but I know it's not that easy in reality My hair still looks ok so I'm very lucky, I just know I've lost a lot of it recently. It's so much thinner that I have to put an extra twist on my hairbands if I tie it back, and on my parting my scalp is much more obvious. White scalp....mmm... I have my fingers crossed. For you too Ginnie. Thanks for sharing your story, that took a lot of guts Bram.
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CRPS started in left knee after op in Aug. 2011 Spread to entire left leg and foot, left arm, right foot. Coeliac since 2007. Patella femoral arthritis both knees. Keep smiling! . |
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"Thanks for this!" says: | ginnie (08-09-2013) |
08-12-2013, 08:50 AM | #23 | |||
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Hope this helps Chris |
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"Thanks for this!" says: | Brambledog (08-12-2013) |
08-12-2013, 12:30 PM | #24 | ||
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That's brilliant Chris, thank you
I'll go and read up on it... Bram.
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CRPS started in left knee after op in Aug. 2011 Spread to entire left leg and foot, left arm, right foot. Coeliac since 2007. Patella femoral arthritis both knees. Keep smiling! . |
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