Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 Hi, Tried to mail you privately, but it seems like your server or some server on the way thought my mail was spam. I think some server reacts towards the psoriasis.no domain as if it is a snake oil sellers domain, not the norwegian psoriasis association... So I better post here instead... Hi Sue, Didn't I meet you in Winston-Salem? I think I did... I am planning on going to Buffalo. I just can't wait... It will be wonderful... I visited the hotel's website, and the hotel looks beautiful... I hope they have an outdoor area too where we can sit socializing in the evenings etc... That would have been wonderful... I was wondering... You know about the program, right? Will there be an orthopedic or neurosurgeon there? You see, I have such problems with my SI joints, and there's nobody that can a thing about it here where I am in Norway. I have been sleeping in a sitting position for two years now and it is so hard, it is tough on my back, but I have no choice, because if I try laying down, it pops out and locks up with nerves compressed. There is now way I can sleep with it out... I can't lay down on a PT or examination bench either without it happening. So it is an ackward problem. I was wondering if it maybe could be fixed surgically. But I have had no luck here, I have not even been able to get X-rays or anything done. I only get the answer " we know what happens " (read: it pops out, you have EDS - live with it)... But maybe if I could talk to a US doc who have expertise on EDS, I could get a letter of recommandation, maybe that would make it possible to apply for social security funding to go to the US to get it fixed... I was going to do the same thing when I was in Winston-Salem, but then the doc cancelled and they didn't get another. Instead they got a OB-GYN... Didn't exactly help, he-he... I haven't been able to sleep properly in a normal bed for years, but up until 2 years ago, I could manage sleeping in my waterbed at home. Now I am sitting in an electrical hospital bed... Thanks for replying... Aase Marit >In a message dated 2/16/04 5:50:15 PM Eastern Standard Time, >teaforme@... writes: > ><< Is there specific material being used or will some be developed by the >conference? >> > >There is not anything specific being used for the conference, but we are >arranging some awesome things. That is a great idea, though, >.....a kids >geared program about EDS. We did have soemthing like this arranged to be done >by a genetic counselor who has EDS herself, but she has become quite ill and >we don't know if she will be able to do the workshop we had arranged. I will >bring this up at the next conference committee meeting. We have designed an > " EDS " wordsearch and may work on a crossword puzzle too! > >Also, I wanted to tell you, I did order a book at one point in time about >EDS, titled, " Learnign to be Different " ......I did not like it at >all. I don't >want my children to think they are " different " just because they have EDS. I >want them to acknowledge that they have this, and despite having EDS they are >NOT different. Like said, " they are not their diagnosis " . I actually >threw my copy in the trash. Again, that is just my opinion, and in someone >elses case it may be an appropriate book. But, I do believe that this is our >biggest challenge everyday we live with EDS.....to not be different, >to be seen >and treated just like everyone else. > >Hugs, >Sue > > >To learn more about EDS, visit our website: http://www.ceda.ca > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2004 Report Share Posted February 17, 2004 In a message dated 2/17/04 9:55:19 AM Eastern Standard Time, aase.m@... writes: << Didn't I meet you in Winston-Salem? I think I did... >> We sure did!!!! I've been following your emails. Glad to see you back on the list! The hotel is really beautiful....I can't rememebr what kind of outdoor accomodations are available. At the time we looked at so many hotels to eb sure we had the right one.....things are kind of running together. I am really excited too! There will be an orthopaedic surgeon, but he specializes in shoulders and is coming from a hospital in New York City where they only do orthopaedic surgery and treat arthritic conditions. there will also be a neuro-opthomologist, but I am not sure how much he does with the spine. I believe he deals mostly with brain issues. But you still might be able to ask him something. I did contact a Spine Center here in our area and was hoping they would offer to do a presentation as they treat many of us here with EDs and spine issues, but it did not work out. I am going to send registration info anyway to their office and see what happens. You know who you might ask.....we will have a panel discussion with Dr. Lavallee and Dr. Kumar at the conference. Both these physicians treat an unusually high number of EDS patients. As you may already know, Dr. Mark Lavallee has EDS himself, and Dr. Kumar is the expert here in our area and treats approx. 20-25 patients with EDS. He is the medical advisor for our local group and a wonderful doctor and person. All of us in my family love him. When I was sick he would stay at the hospital ICU in mornings, go do his office hours and then come back in the evening......he went to bat for me and here I am, still here, still surviving. So while neither could give you a " surgical " consult, either one can probably point you in the right direction. Hope this helps, and can't wait to see you. Hugs, Sue Ginley Quote Link to comment Share on other sites More sharing options...
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