Guest guest Posted February 13, 2003 Report Share Posted February 13, 2003 Sounds like we should craft a similar letter for CP to hand out to those who tell us " but you look so healty " ! Hmm, I know some people who would benefit from it right now (particular family members, not anyone on this board. .) Definitely makes one think. Sounds like the SSA people could also use a letter like this considering how often they deny a case because the person didn't " look " sick. Kimber -- Kimber Vallejo, CA hominid2@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2003 Report Share Posted February 13, 2003 Sounds like we should craft a similar letter for CP to hand out to those who tell us " but you look so healty " ! Hmm, I know some people who would benefit from it right now (particular family members, not anyone on this board. .) Definitely makes one think. Sounds like the SSA people could also use a letter like this considering how often they deny a case because the person didn't " look " sick. Kimber -- Kimber Vallejo, CA hominid2@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2003 Report Share Posted February 14, 2003 Dear , Tthank you, thank you very much. I have chronic hepatitis B and this letter hit home with me. I am cured of cp but I am this person in the post you sent. I am the person who seems happy while struggling every day of my life. I am the person who does the best that I can handling this disease. I am this person who looks healthy, acts & appears healthy but is crying on the inside. This post describes me completely. I am saving it. Thanks again, Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2004 Report Share Posted June 19, 2004 Dear ------: I was referred to you by Dr. Lionberger last week. I didn’t expect to take so long getting back to you; I had several doctor appointments for most of the past week, and I can really only deal with one a day. It may be strange to write first, but I’ve wasted a lot of time being turned down by doctors and dentists who weren’t forewarned. I hope I won’t waste your time by trying to save mine. If there is any chance of physical therapy helping, I don’t doubt that you’ re the one to manage it. But I have to tell you, it scares me. For my whole life, physical activity has equaled pain and injury. I didn’t know why until four years ago: the collagen defect I inherited (Ehlers-Danlos Syndrome) allows my joints to move apart easily, almost all of them to some degree. These movements trap tissue between them. It hurts, and the more the joint separates, the more it can hurt when it reseats. This fortunately hasn’t caused much visible damage, but it has caused nerve damage. I don’t think it’s going to be possible to reduce most of these instances, because the trouble movements can be so small. That’s been the experience of most others with similar EDS problems. My own experience scares me, too. I’ve been referred to PT four times before this. The therapists didn’t know what to do. What little they offered ended up giving me problems that affected me for days, even months. I’ve attempted many times to set up my own exercise routines, but each time hurt myself and stopped. There are other problems, like osteoporosis, aneurysm risk, distracting sensory noise, and anxiety issues (which can accompany hypermobility, no surprise to me). I even managed to have my arm bruised by a blood pressure cuff a few weeks ago. I’ve tried to brace joints, and it never works because my joints can shift enough within the limits of the braces. PT may just offer more opportunities in a day for joints to hurt me. On the other hand, I can hurt myself sitting still, so I try to keep moving. I know osteoporosis is helped by exercise. I also know physical therapy is the only thing Dr. Lionberger can offer me; everything else is guaranteed to make things worse. And the previous PT attempts were on Medicaid with County Hospital District, where individual attention is almost nonexistent and what attention they can give is usually focused on rehabilitating injury. I think I ’m in a different situation this time. It’s possible there aren’t any solutions, but if there’s anybody who can help me figure out how to do this, I think it’s probably you. Even if I can’t prevent the joint slippage, I’m still hoping to find exercises that won’t injure me. You can probably tell I’ve thought a lot about this. I’ve pulled together what I’ve learned from previous attempts; if that’s any help to you, it’s attached, along with the medical information I give new doctors. If I haven’t scared you off by now, I’ll feel more secure about working with you; let me know what to do next. Thank you. Sincerely, Mark o Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.