The thought of being in a wheel chair is very scary, especially since I'm divorced and on my on. That was almost two years and things have not gotten better. I have gotten weaker on my right side, loose my balance more often; stay light headed, joints stay sore and swollen, and have terrible fatigue. My lymphnodes stay swollen. Just a few months ago the sweat glands underneath my arm got infected and I almost had to have surgery to remove them. The doctor could not give an explanation for it other than it is something that usually happens to obese people. However, I am not overweight! I was checked then for lymphoma and HIV, both of which came back negative. My newest symptom which just started in July of 1999, is my lips swelling up. My eyes have always been swollen in the morning but now I'm waking up with gigantic lips, too! They usually go down by the end of the day. I'm also having major headaches.

It seems that in the beginning of all this I was tested for Lupus. That was about 5 1/2 years ago, and at that time, it came back negative. I would like to be tested again now. I called one of my doctors (an Endocrinologist), but I can't get in to see her for month. So I called my regular internist, who said it was just an allergic reaction to something and called in some antihistamines. I then called the neurologist who tested me a couple of years ago, but found I need a new referral from my internist because it has been so long. I just want to say to heck with it and not worry about it. Yet, I just don't feel good at all and everyday is a struggle for me. Then especially reading your story makes me want to not give up. That is what I want to prevent is to get treatment before something permanent happens. I feel so helpless and that there is nobody I can turn to. Your story was an inspiration to me and I appreciate you taking the time to listen.