Guest guest Posted June 22, 2004 Report Share Posted June 22, 2004 SHOOT, Jo, I know you were hoping for better results than this. If you did choose to have the wrist fused, could you then use crutches?? I'm so sorry for you. But it could be worse. To brighten your world, I will tell you about a story I saw on TV the other night. It was about a boy that was born with just tiny stumps for legs, and the lower part of his abdomen was " missing " . The stumps were more in the way than useful, so they amputated them. So, basically he ended up with a body that was from about and inch or two below his chest, up. He got around in a wheelchair, of course, but ALSO, on his hands, kind of like a monkey. He went to prom, even break danced there! He played basketball. He said the dumbest thing he ever did, was to tell a friend to spin him while he was sitting on the wheel of his wheelchair (it was on it's side). The announcer asked him what happened, and he said he flew off and split his head open and had to have stitches - and then he laughed about it! He had the BEST attitude of ANYONE I had EVER seen! He was going to college. He said you could either sit around and whine and be miserable all your life, or you could make the best of what you have, and have as much fun as you can. Oh my, what I could LEARN from that young man! Jo, I'm not saying you're whining - far from it! With all that's happened to you, you have a great uplifting spirit, and I'm so proud of you! I just told you this so that you remember to always know there are others that are worse off than ourselves! And knowing you, I bet you're smiling right now! The one thing we couldn't figure out, was how he got rid of waste products. I assume he had a colostomy or something, but you sure couldn't tell! I guess he had sperm as well, as they said they sure weren't counting out having children for this young man! He said he has dated, but does not want anything serious while he's going away to school. I would give anything just to meet him and hang out with him! I was thinking earlier, that my neck was bothering me today, but just remembering this story, has eased the pain! Good luck, and please keep us informed! Thinking of you! Love Lana > So I have been placed back in to a plaster - big bird yellow this > time! - and handed over to Mac for further treatment and care. I have to confess that the > ease and frequency with which my worst is dislocating and the > severity of the damage being done now is making me wonder whether > the time has come to just cut my loses and fuse the darned thing. I > don't really want that but I can't keep going on in the cycle of > constantly dislocating and weakening the joint. I'm spending more > time in splints and casts than out and I just have to consider > whether enough is enough. I think I will talk it over with Mac next > week in more detail, so that I at least know the full picture and > can decide whether it's something we should do sooner rather than > later. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2004 Report Share Posted June 22, 2004 SHOOT, Jo, I know you were hoping for better results than this. If you did choose to have the wrist fused, could you then use crutches?? I'm so sorry for you. But it could be worse. To brighten your world, I will tell you about a story I saw on TV the other night. It was about a boy that was born with just tiny stumps for legs, and the lower part of his abdomen was " missing " . The stumps were more in the way than useful, so they amputated them. So, basically he ended up with a body that was from about and inch or two below his chest, up. He got around in a wheelchair, of course, but ALSO, on his hands, kind of like a monkey. He went to prom, even break danced there! He played basketball. He said the dumbest thing he ever did, was to tell a friend to spin him while he was sitting on the wheel of his wheelchair (it was on it's side). The announcer asked him what happened, and he said he flew off and split his head open and had to have stitches - and then he laughed about it! He had the BEST attitude of ANYONE I had EVER seen! He was going to college. He said you could either sit around and whine and be miserable all your life, or you could make the best of what you have, and have as much fun as you can. Oh my, what I could LEARN from that young man! Jo, I'm not saying you're whining - far from it! With all that's happened to you, you have a great uplifting spirit, and I'm so proud of you! I just told you this so that you remember to always know there are others that are worse off than ourselves! And knowing you, I bet you're smiling right now! The one thing we couldn't figure out, was how he got rid of waste products. I assume he had a colostomy or something, but you sure couldn't tell! I guess he had sperm as well, as they said they sure weren't counting out having children for this young man! He said he has dated, but does not want anything serious while he's going away to school. I would give anything just to meet him and hang out with him! I was thinking earlier, that my neck was bothering me today, but just remembering this story, has eased the pain! Good luck, and please keep us informed! Thinking of you! Love Lana > So I have been placed back in to a plaster - big bird yellow this > time! - and handed over to Mac for further treatment and care. I have to confess that the > ease and frequency with which my worst is dislocating and the > severity of the damage being done now is making me wonder whether > the time has come to just cut my loses and fuse the darned thing. I > don't really want that but I can't keep going on in the cycle of > constantly dislocating and weakening the joint. I'm spending more > time in splints and casts than out and I just have to consider > whether enough is enough. I think I will talk it over with Mac next > week in more detail, so that I at least know the full picture and > can decide whether it's something we should do sooner rather than > later. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 Jo, Keeping you in my prayers!!!! Sorry to hear about the wrist! Hugs, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 Well, Jo, I am glad to hear about your shoulder - sounds like it is healing nicely. I wish you had gotten better news about your wrist - 6 months in a cast (I can't even imagine) and possible surgery?? Don't you sorta wonder when enough is enough? I hope your meeting with Mac goes well next week and, I do hope your wrist gets better faster than the doctors think!! Love Patti Mixed results from hospital visit To learn more about EDS, visit our website: http://www.ehlersdanlos.ca Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 Hi Jo, I'm so thrilled that your shoulder has come along so well! That's just fabulous! I know you have really sweated it out with all that hard PT and surgery rehab and I sure am happy to hear it is all paying off! That's just wonderful! I am very, very, sorry to hear of that darn wrist Jo :-( Jeeeezzz that much time stuck immobilized with the possibility of surgery is awful! I really hope it doesn't come to that... Let us all know what Mac says. I sure hope he can help out with your jaw too. You sure don't need anxiety about eating, yawning, or opening your mouth on top of things!!!! I'm very sorry that these darn upper body issues are pushing forward the need for a wheelchair for your lower body issues. Take things one day at a time, as they come... I know there are some here using a wheelchair, and I think most found that while making the transition to the w/c was upsetting, the new found freedom of being able to be up longer and do more was very rewarding. I sure hope that when the day comes that its time for the w/c that it serves as a tool to reclaim some of your activities. Hang in there Jo... I'm a bit behind in everything computer related with tending to Raffi, but I'll get an email off to you soon dear. Rest up and take things easy... (((((((((((((((HUGS))))))))))))))))) -Rhea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 Hi Jo, I'm so thrilled that your shoulder has come along so well! That's just fabulous! I know you have really sweated it out with all that hard PT and surgery rehab and I sure am happy to hear it is all paying off! That's just wonderful! I am very, very, sorry to hear of that darn wrist Jo :-( Jeeeezzz that much time stuck immobilized with the possibility of surgery is awful! I really hope it doesn't come to that... Let us all know what Mac says. I sure hope he can help out with your jaw too. You sure don't need anxiety about eating, yawning, or opening your mouth on top of things!!!! I'm very sorry that these darn upper body issues are pushing forward the need for a wheelchair for your lower body issues. Take things one day at a time, as they come... I know there are some here using a wheelchair, and I think most found that while making the transition to the w/c was upsetting, the new found freedom of being able to be up longer and do more was very rewarding. I sure hope that when the day comes that its time for the w/c that it serves as a tool to reclaim some of your activities. Hang in there Jo... I'm a bit behind in everything computer related with tending to Raffi, but I'll get an email off to you soon dear. Rest up and take things easy... (((((((((((((((HUGS))))))))))))))))) -Rhea Quote Link to comment Share on other sites More sharing options...
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