Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Jill, please send me her address. It is EDS causing his problems, right?...( just so I know what to say to her.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 The poor woman, and gosh her poor son :-( This is just so sad. I would gladly send a HUG card Jill! In regards to pain management-- When I had the bad flare up with my knee a year ago I was stuck mostly in bed but occaisionally on crutches for 6 months. Warm water therapy with a good, extremely gentle, physiotherapist starting at baby steps worked really well for me and got me off crutches and walking again. Another suggestion, if she is Canadian, is to contact the arthritis society. She needs a refferal from her sons' GP to get her son on the client list, but the services are free. An occupational therapist can come out and assess her son and the house and suggest changes, and a physiotherapist can come right out to their home to see what she can offer and perhaps set up a pool therapy program. I would be more than happy to help out if she wants in getting her son on the list. The arthritis society deals with those with orthopaedic arthritis like conditions even stemming out to cover chronic fatigue syndrome and fibromyalgia so I'm pretty confidant they would reach out to her son too. They sure did for me. During my knee flareup I was on oxycontin 30 -40 mgs 2X daily. This was built up to that over a couple of months but I came off of it after the 4th month b/c of side effects. It helped the pain, but totally made me out of it and coming off of it was horrible. Percocet is good for breakthrough on the bad days, but its not so useful when the pain is constantly bad... Ditto for morphine. It was a lifesaver with my spinal fracture, but side effects were not nice and it really is only good for about two weeks. Some people have found relief with low doses of amitriptyline or imipramine but my sensitive body didn't jive well with those meds either! Accupressure has been worth every minute put into it and if I could afford gentle massage therapy I would try that again too. Its really a tough call when the pain is constantly that severe! I would pursue a good shoulder surgeon (perhaps the fellow in Ottawa?) and see if anything can be done for the poor guy in that regard. Pain clinics can be helpful, but really it depends on the attitude of the staff there, their methods, training, and philosophies. I sure am sorry about this terrible situation. -Rhea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Jill, I ma so sorry to hear about what this poor lady and her son are going through. I have plenty of hugs to spare and would be more than willing to send any needed her way - please just let me know what I can do. Only wish I could do more to help. Hee-hee, perhaps we should set up a group of hug warriors for times like these? :-) Love and hugs....Jo xxx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Jill, I ma so sorry to hear about what this poor lady and her son are going through. I have plenty of hugs to spare and would be more than willing to send any needed her way - please just let me know what I can do. Only wish I could do more to help. Hee-hee, perhaps we should set up a group of hug warriors for times like these? :-) Love and hugs....Jo xxx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Thank you all, your response is overwhelming. I ought to give you a bit of background into this situation. This young man is only 28 years old and has never had a normal life. he's had two fiancé's leave him because of his EDS issues. Primarily, his issues are related to extreme hypermobility of the upper extremities. His shoulder sockets are malformed and anatomically can not stay in place. This is causing other issues as well including ribs that are folding onto one another, cervical and vertebral malformations which is affecting his breathing. To put it plainly, he's collapsing. Pain is immense and he's not being managed well. The orthopaedic community has throw up their hands and offer him no hope. he is in turn, losing mental hope. he is unable to be upright at all, he spends his days in a reclined position. he is unable to work, unable to go to school. He's lost friends and is close to losing his independence. He is living alone but is losing the ability to feed himself. His mother says that he is unable to be at a computer at all anymore and is not able to hold a phone for any length of time. His circulation and neurological systems are compromised because of the position of the shoulders and ribs, etc. The medical and surgical community is afraid of him because latest scans showed a marked enlargement of the aorta. This lady feels that her son is losing ground, and hope. She could use some support as could her son. I think it would be important for her son to feel that he's not alone and to know that there are others who have walked a mile in his shoes. Jill Hug Cards? I have someone in need of a hug, words of encouragement and a good old ceda support. Is anyone willing to send her a card in the email to let her know that we are thinking of her? Her 28 year old son is in grave condition with pain that is uncontrolled, two shoulders that are permanently dislocated, his spine and ribs are subluxed and causing breathing difficulties, he is unable to function. His mom is beside herself, her son has given up. If you can help, please let me know if you can help and I'll give you her full mailing address. Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Thank you all, your response is overwhelming. I ought to give you a bit of background into this situation. This young man is only 28 years old and has never had a normal life. he's had two fiancé's leave him because of his EDS issues. Primarily, his issues are related to extreme hypermobility of the upper extremities. His shoulder sockets are malformed and anatomically can not stay in place. This is causing other issues as well including ribs that are folding onto one another, cervical and vertebral malformations which is affecting his breathing. To put it plainly, he's collapsing. Pain is immense and he's not being managed well. The orthopaedic community has throw up their hands and offer him no hope. he is in turn, losing mental hope. he is unable to be upright at all, he spends his days in a reclined position. he is unable to work, unable to go to school. He's lost friends and is close to losing his independence. He is living alone but is losing the ability to feed himself. His mother says that he is unable to be at a computer at all anymore and is not able to hold a phone for any length of time. His circulation and neurological systems are compromised because of the position of the shoulders and ribs, etc. The medical and surgical community is afraid of him because latest scans showed a marked enlargement of the aorta. This lady feels that her son is losing ground, and hope. She could use some support as could her son. I think it would be important for her son to feel that he's not alone and to know that there are others who have walked a mile in his shoes. Jill Hug Cards? I have someone in need of a hug, words of encouragement and a good old ceda support. Is anyone willing to send her a card in the email to let her know that we are thinking of her? Her 28 year old son is in grave condition with pain that is uncontrolled, two shoulders that are permanently dislocated, his spine and ribs are subluxed and causing breathing difficulties, he is unable to function. His mom is beside herself, her son has given up. If you can help, please let me know if you can help and I'll give you her full mailing address. Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Oh Jill, how SAD! I will be doing lots of praying for him and his family! Love Lana 0:-) Re: Hug Cards? Thank you all, your response is overwhelming. I ought to give you a bit of background into this situation. This young man is only 28 years old and has never had a normal life. he's had two fiancé's leave him because of his EDS issues. Primarily, his issues are related to extreme hypermobility of the upper extremities. His shoulder sockets are malformed and anatomically can not stay in place. This is causing other issues as well including ribs that are folding onto one another, cervical and vertebral malformations which is affecting his breathing. To put it plainly, he's collapsing. Pain is immense and he's not being managed well. The orthopaedic community has throw up their hands and offer him no hope. he is in turn, losing mental hope. he is unable to be upright at all, he spends his days in a reclined position. he is unable to work, unable to go to school. He's lost friends and is close to losing his independence. He is living alone but is losing the ability to feed himself. His mother says that he is unable to be at a computer at all anymore and is not able to hold a phone for any length of time. His circulation and neurological systems are compromised because of the position of the shoulders and ribs, etc. The medical and surgical community is afraid of him because latest scans showed a marked enlargement of the aorta. This lady feels that her son is losing ground, and hope. She could use some support as could her son. I think it would be important for her son to feel that he's not alone and to know that there are others who have walked a mile in his shoes. Jill Hug Cards? I have someone in need of a hug, words of encouragement and a good old ceda support. Is anyone willing to send her a card in the email to let her know that we are thinking of her? Her 28 year old son is in grave condition with pain that is uncontrolled, two shoulders that are permanently dislocated, his spine and ribs are subluxed and causing breathing difficulties, he is unable to function. His mom is beside herself, her son has given up. If you can help, please let me know if you can help and I'll give you her full mailing address. Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 I definitely would like the address, Jill!! I'll send a card right away! Love Lana 0:-) Hug Cards? I have someone in need of a hug, words of encouragement and a good old ceda support. Is anyone willing to send her a card in the email to let her know that we are thinking of her? Her 28 year old son is in grave condition with pain that is uncontrolled, two shoulders that are permanently dislocated, his spine and ribs are subluxed and causing breathing difficulties, he is unable to function. His mom is beside herself, her son has given up. If you can help, please let me know if you can help and I'll give you her full mailing address. Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 I'd like to have the address too please.......? Love And Hugs- TJ Jill, please send me her address. It is EDS causing his problems, right?...( just so I know what to say to her.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Count me in Jill I wlould be happy to send a hug card. Sharon > I have someone in need of a hug, words of encouragement and a good old ceda support. Is anyone willing to send her a card in the email to let her know that we are thinking of her? > > Her 28 year old son is in grave condition with pain that is uncontrolled, two shoulders that are permanently dislocated, his spine and ribs are subluxed and causing breathing difficulties, he is unable to function. His mom is beside herself, her son has given up. > > If you can help, please let me know if you can help and I'll give you her full mailing address. > > Jill > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2004 Report Share Posted June 17, 2004 Count me in Jill I wlould be happy to send a hug card. Sharon > I have someone in need of a hug, words of encouragement and a good old ceda support. Is anyone willing to send her a card in the email to let her know that we are thinking of her? > > Her 28 year old son is in grave condition with pain that is uncontrolled, two shoulders that are permanently dislocated, his spine and ribs are subluxed and causing breathing difficulties, he is unable to function. His mom is beside herself, her son has given up. > > If you can help, please let me know if you can help and I'll give you her full mailing address. > > Jill > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 Hi Jill, Can I have both mom's and son's address, or should we send separate cards to the same address? Let me know, I'd love to help. Also, my Mom is hanging in there....having some complications, but we knew that would happen didn't we? I just feel so bad, as she is missing my baby sister's wedding shower tomorrow....her baby.......she is just crushed. She is very jaundiced, liver enzymes are elevated obviously, and they did have to do the lung tap today. Although all this is awful, they are being so careful with her. I am so pleased. The entire hospital has taken an interest in the EDS. Picc insertion and lung tap done down in x-ray. They might have to insert chest tube....not sure yet, and possibly one to drain fluid off the abdomen (most likely an abscess). Temp was 103.4 yesterday even though she has been on 2 IV antibiotics and the CVP line was removed days ago. Thanks so much for all the prayers, well wishes and healing energy!!!! I really appreciate it. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 Count me in, too, Jill -- I would be happy to send one also. Patti Re: Hug Cards? Count me in Jill I wlould be happy to send a hug card. Sharon > I have someone in need of a hug, words of encouragement and a good old ceda support. Is anyone willing to send her a card in the email to let her know that we are thinking of her? > > Her 28 year old son is in grave condition with pain that is uncontrolled, two shoulders that are permanently dislocated, his spine and ribs are subluxed and causing breathing difficulties, he is unable to function. His mom is beside herself, her son has given up. > > If you can help, please let me know if you can help and I'll give you her full mailing address. > > Jill > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 Hey Sue, Mom requests that all correspondence for her son go to her address so I'll forward along privately, the address. Thanks Sue, it's kind of you to think of others during this tough time for you! I am glad to hear that your mom is holding on, she's traveled down quite a road and I am sure she has far to go - but she's overcome much already. With you by her side though, she can't lose. Is there anything at all that I can do??? Jill Quote Link to comment Share on other sites More sharing options...
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