What do you want others to know about lupus?

Lupus isnt a foreign word to me since I have been made keenly aware of the illness going back over 35 years. That was when my older sister Rose Mary was diagnosed with lupus erythemotosis.Back then virtually few people were familiar with it. My family included but we learned quickly so that we could help give our support. Since then I have been diagnosed with it.

Why is lupus a cruel mystery to you?

My diagnosis came in dribs and drabs even tho I have had symptoms since the early 90's.In 97 my neurologist said he felt I had it and in 2003 my PCP did tell me I had sero negative lupus but ana's and sed rates never confirmed these statements thus I went treated. Last year all that changed when I was desperately ill with the symptoms and the testing finally indicated I indeed had lupus. Recently I was diagnosed with" lupus cerebritis" which is quite devasting news. I have often felt like something else was taking place with my body and brain by my infirmity with walking and also by my inability to remember things even the easiest things I'd forget.I was glad that my doctor recognized my struggle with those issues and could get me on new meds.It has been rough going for me all through out my experience with lupus. My life is based on how well I feel each day and mostly I feel tired ,sometimes depressed and usually in significant pain. Mornings are better for me after I work thru the stiffness but by late afternoon I am forced to havea 45-60 minute nap.Everything slows down and I barely manage to make dinner for my family of 4 kids and husband,I used to like reading in the evenings but my vision is no longer dependable thanks to blurry vision caused by the illness.The body pain is terribly difficult for me to handle

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