Looking back, I guess the first indication of lupus I had was a false-positive serum test for syphilis back in the early 1970's. For years I was told the pain was all in my head. At the time of my diagnosis, I thought I had carpal tunnel syndrome. My hands were swollen and hurt so badly I barely had any use of them. Also, my left foot was extremely swollen. The next day I couldn't walk and was in a wheel chair. What a jolt of fear hit me! I was really lucky because I had just changed doctors and he recognized the problem and sent me to a Rheumatologist. My current symptoms include severe fatigue, brain fog, photosensitivity that causes me to swell all over if I get in the sun, and my resistance is very low. I seem to catch every infection and virus that anyone has.

I am taking 600 mg. of Plaqunil a day, I give myself a shot of Methodrexate once a week, 2400 mgs. Motrin, folic acid, potassium, a diuretic, and vicodine for pain. I would say the medications are helping but not like the high doses of Predisone. I started at 60 mg. of Prednisone a day but have since been tapered down to 5 mg. a day. I have to stay on at least the 5 mg. because I start swelling up again without it. I have been fortunate to have good health care by well-informed physicians, and I also have the support of my family.

I dont think I have yet learned to deal with the emotions of this illness. I sure hope I will learn because I feel I've lost so much of myself to lupus. I've gained 5 lbs. and I hate myself the way I've become. I would like for my family and friends to understand that just because I may appear all right at times does not mean that I really am. I can't always do things spontaneoulsy and I can't make plans anymore because I may not be able to keep them.

Gayla, I just want to thank you for your web site and all the personal stories. They mean a lot to me and have helped me deal with my own illness a little better. Again, thank you.