Michelle L
Diagnosed at 25

What do you want others to know about lupus?

Ever heard the phrase never judge a book by it's cover? That was written for Lupus patients. You see, we may not look sick on the outside but there's always a war raging on the inside. A war that attacks without provacation or warning. It attacks & keeps on attacking until it wins the war. You see, Lupus never gives up.

Why is lupus a cruel mystery to you?

I have been fighting Lupus since I was 15 yrs old. I wasn't "officially" diagnosed until I was 25. Ten yrs of not knowing what was wrong but knowing that something was. Over the years the flares have gotten steadily worse. After each flare it takes longer & longer to recuperate & I never get everything back, I always lose a little bit of something. At the age of 30 I had to quit working because the flares were so bad they were life threatening. Today I am in an electric wheelchair because I can no longer walk. I can't use a manual chair because I've lost about 65% of the use of my arms. I'm afraid to go to sleep at night because I might wake up & not be able to talk. Any infection in my body goes septic & it goes straight to my brain. Dr's have advised that one day I may wake up in a vegetative state. Something we all want to hear right? My mother is my caregiver. She has to help me bath & she's basically my slave. She's become a live-in nurse. I have non-healing wounds that she has to dress on a daily basis. I even need her help getting up off publc toilets. There are so many things that Lupus has taken away from me. I do what I can & I try to make it all count. I try to be positive & always have a smile on my face. Keeping a positive attitude helps make living with Lupus a little easier. :)

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