going on 2 years with Lupus

Hi my name is Kymira and I was diagnosed with Lupus SLE in Dec of 2006. I had just decided to go back to college and get my bachelors and masters in social work so I moved to Miami from Detroit to get a change in scenery. I like to hand with my family and close friends and go on vacation and cruises. When I was diagnosed it literally felt like my WHOLE life was flipped upside down. I too waited to have children (the Christian way) I even remained a virgin to the age of 27. I am now 31, with no relationship, no children of my own, and no good health; I can't travel and I can't even get on airplanes because I am on Oxygen. At one time I too felt that I was being punished for something. I desire to be married and I desire to have my own family however, I don't know any man that can handle this cause at times I can't even deal. U feel me? I can say the one thing that has remained a constant in my life is God and my faith in God. Thats really all I have. They don't have a cure for this disease, I haven't been introduced to a medicine yet that helps me, and the people in my life just don't get it. So All I have is Jesus. I don't mean to get all religious on u (and now as I write I am crying), but all I have is God. Don't get me wrong though, cause I do have family, and my brother and sister help me out in abundance but they don't and never can understand or empathize what I really feel like and go thru. I can go on and on writing about this. Yes it really does suck that they don't have a cure for Lupus and they don't give it enough exposure. I feel that they should really change this cause this disease is so foreign to people. I had some of the same feelings that u expressed and it wasn't to recently that I have started to be more confident about myself with this disease. I'm not sure if they ever will find a cure for all of this but I know that my God is able to cure without any medicine. Feel free to respond or write me any time. By the way writing about your feeling will start to help u out alot too. (Better Out then in)

I have the same issues. You say you were in the military. Have you tried applying for VA benefits? I was in the military also and medically discharged for a seizure disorder, which now they don't even think was the problem. They are not exactly sure what I have, but I never have any energy and I am sick all the time. It is kind of pathetic. Half the time I can't even stand up long enough to take a shower, joints hurt all the time, IBS, nausea, rashes, you name it. They think it may be MS now. Anyway I do do feel EXACTLY as you do most of the time. I waited until I was 27  and found the right person and got married.  We have tried to have kids and 8 years into marriage I finally got pregnant only to have a miscarriage at 8 weeks. No luck since. But anyway it really does suck especially when you see these people who don't deserve kids having one after the other. Maybe a miracle will happen for both of us..Can always hope, I guess.