Did any of you get the chance to watch "The Boy Whose Skin Fell Off" last night? It was the story of a guy born with a rare, blistering skin condition called epidermolysis bullosa (EB). It causes the skin to blister, fall off when hugged, touched, etc. It causes the sufferer to be bandaged constantly, in constant unbearable pain, etc. It was truly a heartbreaking story. It really helped me put my own struggles (with RA, congestive heart failure and ulcerative colitis) in perspective. For anyone interested in hearing more about this, the website is:
Hi Juliah,
I saw a commerical for the show and it piqued my interest but I couldn't remember what channel or what time it was on. I can't remember anything anymore. It's amazing I leave the house in the morning fully dressed!
Do you know if it will be repeated?
Juliah...saw the same show you were talking about on TLC (The Learning Channel). Helped keep everything in perspective for me. Things COULD be worse. Haven't been online much. Just went to a heart doctor and discovered I have Mitral Valve Prolapse in my heart. Two damaged heart valves which put me at higher risk for stroke and heart attack. I'm so overwelmed right now. May be from undiagnosed Lupus, the MRSA may have damaged my heart, or just inflamation from RA, rheumatic fever (repeated Strep)???? He's not sure. Got more meds to take. Overwhelmed and scared. I am still having some irregular heart beats and some difficulty breathing when I lay down. It just feels like pleurisy. My MD did give me Provigil which heart dr said ok to take for the Chronic Fatigue.I'm going back to work tomorrow and will just take one day at a time.Hey,
I've been battling with the realization of what is happening to me. In March when my fingers started to become numb. I'm thinking carpal tunnel....went to the dr. And he confirmed carpal tunnel from the "wrist tapping" thing....had the nerve test...same thing....carpal tunnel....I have worked in food service all of my life from the time I was 15 ( I'm 45 now) All of my career I have alway pushed the limit. Lifted more than I should....not asking for help and have been very active until sometime in March. I remember several years ago getting out of bed and my feet would hurt. I work on my feet so I didn't give it much thought. A year or so later my right shoulder began to hurt, more when I first got up in the morning then it would go away just like the pain in my feet.
Then in March the "carpal tunnel" started.....then I got knots...in the palms of my hands, on my leg. My blood work shows no ra or lupus. Finally got into a Ruiem... this month....I've been on Pred. since March with lasix to help w/ the fluid retentiion. I am now being put on Arava...haven't pick it up from the pharmacy yet. (Guess that part of the denial part it's been called in for 5 days.
It seemed as though it happened overnight. But as I think back all of these "flare ups' that have happened over the past few years. I woke up one day....and they were all there......all at once. I'm scared...I can't make a fist in either hand..Some days I can some I can't. If I don't take prednesone I hurt all over. The drug they want to put me on will affect my liver and I enjoy a cocktail after a long days work. It would be nice to talk with someone who understands. My boyfriend tries but I can tell he is losing his patience with my constant aches and pains. This is real and I'm fighting it like hell. Any words of comfort would be appreciated......hope I don't sound like a cry baby ..... i've learned alot from reading through this site....I took me a couple of days to post... hope it's a "good day" for all of you.
Missed the show, I wish I would have seen it. My neighbor just came over to see if I had watched it. She was obviously very moved by it. I'll have to try to catch it next time it airs.
Karen, I'm so sorry to hear about your heart illness
Kycatfan, Welcome to the board. I'm glad you decided to post, I know you'll find alot of friends here that truly do understand. Everyone here is so wonderful, and there is always someone who's gone through the same thing you have and that's a comforting feeling.
It was on TLC again last night at 10:00, so I'm sure they will run it more. It really was quite moving.