Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 Hi Jackie: Welcome to the group! The people here are great, very supportive, and there is a lot of great information found for us by our moderators, a and . I am sure you will find this group to be a great asset to your coping with autoimmune disease. I am sorry for all of the autoimmune disease that is in your family - the genetic link seems very strong with you all. That is great that you have been able to get off of your medications and to be stabilized with your illnesses to a certain degree. I also have RA, Fibro, Raynaud's, and OA, so can definately sympathize with what you have been going through. It must be very scary to watch your husband go through all of this too - since the ways in which you helped yourself worked so well, perhaps you could help him to work some of that into his treatment too. Right now, aggressive medical treatment of his RA is the best bet he has to slow down or stop the disease process, and avoid destruction of his joints. I am sure that all of you are depressed and stressed out to the max about all of this. What medications is he on? How is your daughter doing? I know the look, I think we all do, and have all gotten that " but you don't look sick " glance as we get out of the handicapped parking spots without having canes, braces or a wheelchair. It's like unless they see something attached to our body that shows we have pain, they don't believe us. It does get very frustrating. Anyway, you are not alone - take care - we are here - Kathe in CA --- jjdill53 <tsitsalagi@...> wrote: > I am glad to find this list. When my daughter was 2 > they told me she > had JRA. In the following years my mother and I have> been diagnosed > with Lupus and RA. I now am in much better health and am on> no medications > and have changed my lifestyle. I went all natural> from my clothing > to what I eat, this helped me. I practice warm> hydo-therapy for the > Raynauds which has made a big difference. Now this> year my husband > was diagnosed with severe RA. His RA factor was so high it was just> unbelievable. My husband is taking> multiple > medications at this time. I am pretty much depressed> about his > condition. Of course watching his daughter and > myself going through > so much he is frightened of what the future may hold> for him. I think > the most distressing thing to hear is " you look ok> to me. " I can't > tell you how many times I heard that Jackie > > > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2006 Report Share Posted August 18, 2006 Kathe, My daughter is in her 30's and functions well even though she has had spine problem, her jaw did not develope fully and her ankles and hands are bad. She just uses the steroids during the active times. She has been on different medications for years. My husband is on somax, Lortabs, mexotrexate, predisone, hctz. Our family had a study done on it by Oregon State University in Portland Oregon / Dornbeckers years ago due the the genetic link. At that time they were in research as to the genetic link. Our youngest daughter has environmental disease with erethmia nordorsum and has tested positive for RA. She has few problems and is in her 20's now, but was bad in her teen years. Our main concern is my husband as he is so bad, his came on so fast and so severe. The rest of us have lived like this for so many years and have learned to deal with it. The depression comes from him being the strong member of the family for years and now is the weakest. Even with the medication his RF is still very elevated. He has an appointment with the DR. in two weeks and we will see what happens, Jackie On 8/18/06, Kathe Sabetzadeh <lv2ryd@...> wrote: > > > Hi Jackie: > > Welcome to the group! The people here are great, very > supportive, and there is a lot of great information > found for us by our moderators, a and . I am > sure you will find this group to be a great asset to > your coping with autoimmune disease. > > I am sorry for all of the autoimmune disease that is > in your family - the genetic link seems very strong > with you all. That is great that you have been able > to get off of your medications and to be stabilized > with your illnesses to a certain degree. I also have > RA, Fibro, Raynaud's, and OA, so can definately > sympathize with what you have been going through. It > must be very scary to watch your husband go through > all of this too - since the ways in which you helped > yourself worked so well, perhaps you could help him to > work some of that into his treatment too. Right now, > aggressive medical treatment of his RA is the best bet > he has to slow down or stop the disease process, and > avoid destruction of his joints. I am sure that all > of you are depressed and stressed out to the max about > all of this. What medications is he on? How is your > daughter doing? > > I know the look, I think we all do, and have all > gotten that " but you don't look sick " glance as we get > out of the handicapped parking spots without having > canes, braces or a wheelchair. It's like unless they > see something attached to our body that shows we have > pain, they don't believe us. It does get very > frustrating. > > Anyway, you are not alone - take care - we are here - > > Kathe in CA > > --- jjdill53 <tsitsalagi@... <tsitsalagi%40gmail.com>> wrote: > > > I am glad to find this list. When my daughter was 2 > > they told me she > had JRA. In the following years > my mother and I have> been diagnosed > with Lupus and > RA. I now am in much better health and am on> no > medications > and have changed my lifestyle. I went > all natural> from my clothing > to what I eat, this > helped me. I practice warm> hydo-therapy for the > > Raynauds which has made a big difference. Now this> > year my husband > was diagnosed with severe RA. His RA > factor was so high it was just> unbelievable. My > husband is taking> multiple > medications at this > time. I am pretty much depressed> about his > > condition. Of course watching his daughter and > > myself going through > so much he is frightened of > what the future may hold> for him. I think > the most > distressing thing to hear is " you look ok> to me. " I > can't > tell you how many times I heard that Jackie > > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2006 Report Share Posted August 20, 2006 Hi Jackie: Yes, sometimes it does come on hard and fast like that, one night you go to bed, and then wake up the next morning and am in so much pain you can't move. The people I have talked to where the RA came on like this are having a very, very difficult time coming to terms with what is happening, and it does seem that they are harder to treat at the beginning to find the right meds because of the sudden severity of the disease. Also, to have been the only " healthy " one in the family, and to see yourself now far behind the " sick " ones, must be terribly hard for your husband, especially as the man and the provider. It must also be very difficult for you to see your husband in such a bad way, after all of the years he was always the one who did things, and could be turned to for help, and now you are helping him. There is a whole lot of upheaval, I would assume, going on in your house, and lots of fears and uncertainties of the future. At least you all have been through it, and know that it will get better, with the right treatment, so keep reassuring him of that. I firmly believe in the genetic link - it happens way to often not to have some significance in trying to pinpoint the gene which might help others before they develop RA symptoms. I am sure that research is going on in that direction, as well as others. I hope that the next doctor's appointment will open new doors for him and help him. Maybe they will be looking into the new biologics. Let us know how you all are doing, and you don't have to wait until you have seen the doctor to write in, okay! Take care - Kathe in CA --- Jackie Dill <tsitsalagi@...> wrote: > Kathe, > > My daughter is in her 30's and functions well even > though she has had spine> problem, her jaw did not develope fully and her> ankles and hands are bad. > She just uses the steroids during the active times. > She has been on> different medications for years. My husband is on> somax, Lortabs,> mexotrexate, predisone, hctz. Our family had a study> done on it by Oregon> State University in Portland Oregon / Dornbeckers> years ago due the the> genetic link. At that time they were in research as> to the genetic link. Our> youngest daughter has environmental disease with> erethmia nordorsum and has> tested positive for RA. She has few problems and is> in her 20's now, but was> bad in her teen years. Our main concern is my > husband as he is so bad, his> came on so fast and so severe. The rest of us have> lived like this for so > many years and have learned to deal with it. The > depression comes from him> being the strong member of the family for years and> now is the weakest. Even> with the medication his RF is still very elevated. > He has an appointment> with the DR. in two weeks and we will see what> happens, Jackie > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
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