Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 Oh Betty, Please write them anyway, you don't have to have the pain issues, your VEDS is very important aspect of EDS, rarer. Please write them, we'll all support you! I don't like to travel alone, but there is medication for anxiety. I could come and visit you there in Baltimore. It's important to you and furthering the knowledge of EDS and your son's death to assist you and others with VEDS. Gosh they are just so knowledgeable! Please think about it? Love, S. NIH study > Hi all > I have been reading with interest all the posts regarding this study. I sure can feel the excitement of those that maybe will finally get a diagnosis, or help with their chronic pain, or suggestions on how to deal with things. I think it is wonderful that these doctors are doing this. Maybe it will help other docrors take note and listen to their patients and know that it is not all in their heads. I also thought it would be interesting to participate in it to find out more about VEDS if possible, however it is impossible for me to make it down there. The problem is not financial, but time and my anxiety would never let me travel anywhere by myself, but the biggest reason is that everyone else needs this study way more than I do, I have no medical issues for myself. I don't live in constant pain (except emotionally without my son) but physically I can do basically what I want......I work, drive, shop go out for walks clean my house whatever. I guess what I really am saying is that perhaps it is not necessary for me to do this even though I have the VEDS diagnosis.....it is not affecting me at the moment. I would rather have someone who really needs to go fill that spot. SOmetimes I even wonder why I am on this list, but I sure have " met " some great , caring , supportive people and when I do get into a funk I just turn on the computer and help is there. > SO thank you guys, you are truly appreciated. > Betty > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 Betty -- If you go, perhaps we could arrange to be there at the same time - two VEDSer's at once, what would they ever do?????? LOL!!!!! Please think about it, Love, Patti NIH study > Hi all > I have been reading with interest all the posts regarding this study. I sure can feel the excitement of those that maybe will finally get a diagnosis, or help with their chronic pain, or suggestions on how to deal with things. I think it is wonderful that these doctors are doing this. Maybe it will help other docrors take note and listen to their patients and know that it is not all in their heads. I also thought it would be interesting to participate in it to find out more about VEDS if possible, however it is impossible for me to make it down there. The problem is not financial, but time and my anxiety would never let me travel anywhere by myself, but the biggest reason is that everyone else needs this study way more than I do, I have no medical issues for myself. I don't live in constant pain (except emotionally without my son) but physically I can do basically what I want......I work, drive, shop go out for walks clean my house whatever. I guess what I really am saying is that perhaps it is not necessary for me to do this even though I have the VEDS diagnosis.....it is not affecting me at the moment. I would rather have someone who really needs to go fill that spot. SOmetimes I even wonder why I am on this list, but I sure have " met " some great , caring , supportive people and when I do get into a funk I just turn on the computer and help is there. > SO thank you guys, you are truly appreciated. > Betty > > Quote Link to comment Share on other sites More sharing options...
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