Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Hi Simone There is a lot of good information here. We all help each other with advice about living with Lupus. Only one out of ten people with Lupus is a male. I feel sorry for your husband; I believe what you say that a man needs to feel like a man by working. I hope he starts to post here. Does he have Systemic Lupus Erythmatosis or Discoid Lupus? Discoid attacks the skin. It sounds like your husband has SLE since he is on disability. It is very hard to get isn’t it? I am on disability too. I have been unable to work for 7 years. My husband works. My kids are grown and gone. I have had lupus since I was a teen. I had cancer 7 years ago and also had a small stroke. The trauma caused me to develop Fibromyalgia. I also have irritable bowl syndrome, Benign Familial Tremor, TMJ dysfunction, arthritis, osteoporosis, and interstitial cystitis. There are several people here with several things wrong with them. There are chemical changes that happen in the brain with Lupus and Fibromyalgia that trigger depression. It is depressing enough having a disease and being unable to do the things you would like to do. The chemical depression makes it worse. A lot of us like me take antidepressants. The other problem is sleep disturbance. It is hard to go into REM sleep and get rested. On top of that, the pain can keep him awake. I take a sleeping pill and a pain pill before bedtime. I take a pain pill when I need it during the day or evening. I have pain all day every day but try to bear with it and take very little pain meds as I don’t want to get hooked. I don’t believe in being a martyr though. When we first get a DX we usually feel relieved. It is agony to not know what you have and everyone saying what is wrong, why don’t you get up and do this or that? Lots of DRs can’t see what is wrong and say it must be in your head. What was your husbands experience, did he get a DX right away? What meds is he on now? Be glad that he can take care of the kids. Being a house dad has rewards for him and the kids both. It is certainly better for the kids than a sitter. Please stay in touch. Your new friend, >>>>>>>>>>>>>>>>>>> Hello my name is Simone , I live in Kentucky, my husband and I will probably both be utilizing this site, my situation is probably going to be different from a lot of yours, My husband has Lupus, he was diagnosed about 4 years ago. He is currently on disability, (which was very hard to get). I need this support group to help me understand if I can what he is going through, He has his ups and downs both physically and emotionally and I would like to be a better support person if I could. Express yourself with over 6,000 FREE Email Smileys - click here! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Thanks for responding to my email-I'm not sure what type of lupus my husband has, after reading all the posts he seems to be doing better than most people, he hasnt had any problems with his organs, he has alot of joint pain and skin rashes, gets really high fevers some nights that turn into cold sweats, and his hands freeze up on him sometimes which really scares him badly. his is prednisone and plaquenil, and imuran, and has only be hospitalized once for about 5 days. His doctor just can't seem to find the right combination of medicine to control this disease. He is talking about putting him on Chemo. Well enough said, once again thanks for responding to my post, I really need a new friend right now that understands. > > > > Hi Simone > > <http://www.smileycentral.com/?partner=ZSzeb001> Custom Smiley > > There is a lot of good information here. We all help each other with advice > about living with Lupus. Only one out of ten people with Lupus is a male. I > feel sorry for your husband; I believe what you say that a man needs to feel > like a man by working. I hope he starts to post here. Does he have > Systemic Lupus Erythmatosis or Discoid Lupus? Discoid attacks the skin. It > sounds like your husband has SLE since he is on disability. It is very hard > to get isn't it? > > I am on disability too. I have been unable to work for 7 years. My > husband works. My kids are grown and gone. I have had lupus since I was a > teen. I had cancer 7 years ago and also had a small stroke. The trauma > caused me to develop Fibromyalgia. I also have irritable bowl syndrome, > Benign Familial Tremor, TMJ dysfunction, arthritis, osteoporosis, and > interstitial cystitis. There are several people here with several things > wrong with them. > > There are chemical changes that happen in the brain with Lupus and > Fibromyalgia that trigger depression. It is depressing enough having a > disease and being unable to do the things you would like to do. The > chemical depression makes it worse. A lot of us like me take > antidepressants. The other problem is sleep disturbance. It is hard to go > into REM sleep and get rested. On top of that, the pain can keep him awake. > I take a sleeping pill and a pain pill before bedtime. I take a pain pill > when I need it during the day or evening. I have pain all day every day but > try to bear with it and take very little pain meds as I don't want to get > hooked. I don't believe in being a martyr though. When we first get a DX we > usually feel relieved. It is agony to not know what you have and everyone > saying what is wrong, why don't you get up and do this or that? Lots of DRs > can't see what is wrong and say it must be in your head. What was your > husbands experience, did he get a DX right away? What meds is he on now? > Be glad that he can take care of the kids. Being a house dad has rewards > for him and the kids both. It is certainly better for the kids than a > sitter. > > Please stay in touch. > > Your new friend, <http://www.smileycentral.com/?partner=ZSzeb001> > > > > >>>>>>>>>>>>>>>>>>> Hello my name is Simone , I live in Kentucky, my > husband and I > will probably both be utilizing this site, my situation is probably > going to be different from a lot of yours, My husband has Lupus, he > was diagnosed about 4 years ago. He is currently on disability, > (which was very hard to get). I need this support group to help me > understand if I can what he is going through, He has his ups and > downs both physically and emotionally and I would like to be a > better support person if I could. > > > > > > > > _____ > > Express yourself with over 6,000 FREE Email Smileys - click here! > <http://www.smileycentral.com/> Quote Link to comment Share on other sites More sharing options...
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