Hi my name is Jeani, 53 yrs  old and I have SLE   LUPUS. I have a bunch of stuff to go with it. And to top it all off I was in a  motorcycle wreck last July, 2006. I herniated 5 disks in my cervical, and 2 in my lumbar. Another story, I assure you! I was told by a cancer doctor that I have LUPUS. What a relief, wrong!! My mom was alive then, and she told this doctor "No problem, we can handle that, as I have SLE too." What we didn't  know was that momma was dying right then from complications of LUPUS.  For nine months. I sat with my momma and did everything anyone could do, washed her, changed her diaper, fed her, gave her meds. Everything except shots. I did for my momma what she did for me when she birthed me. And to this day, I am proud of what I could do for her. She didn't think twice of doing it for me, as I didn't for her. I have special memories that no one can away or things she said that no one else heard. What a special blessing she was to me. My momma has 6 daughters, out of  the 6, 5 have LUPUS. When  momma was so sick in 99', the doctors said it was a freak thing that  one of us would have it. It is not hereditary! A  lot they knew. I have more bad days than good. I can't sleep, I can't move real good when fronts come in, and I have a bad attitude when I'm to tired. I spend as much time with my grandchildren as possible, so if the day ever comes, that I can't see them, I want my memories thru my fog of my beautiful  family. I have 4  kids, 40 to 27 yrs. old. They really do not understand what I am going thru. I just act like their grandma. After momma's death, I cared for daddy until his death in 2005. Daddy understood as my husband understands, this dreaded disease. I don't  know what to say, except I was finally going to college to better myself. When I had my 1st flair. The doctors thought it was      MS, fibro, and 20 other things. Then a light bulb came on, someone remembered momma had LUPUS. Sure enough, so did I. I can't find a good  doctor here. Except my family doctor. He really listens to what is going on! Thank the LORD!! I take 17 pills in the am and        6       to      10 at  night. I hate it, but I have tried to  not take all my meds.  And that landed me in the hospital for weeks. Won't do that again!

 

I do NOT feel sorry for myself. I can always look around and see someone worse off than me. Or with less than me. I always smile and try to help everyone. I love people and I love to talk. So if anyone out here needs an ear, always look me up. Day or night, I hang around. Remember always.

 

There is so much more to my story. But I'm tired and I need to  rest. I will add to my story as I feel better. I know lots of ya'll understand this. But there are those who refused to even try. Because we look so good on the outside. What they don't understand is that we are really dying  piece by piece on the inside. If we could get someone  to post our stories and get the researchers looking for a cure or at least working towards a cure. We would be happy people with hope in sight.  Always remember to LIVE, LOVE & LAUGH!!