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24 Posts
Hi everyone! I have lived with Lupus for 23 years.
I am 45 years old and was diagnosed with SLE in 1986. I first presented with
uncontrollable bleeding (ITP) and spent 6 months in hospital. The first
things I was tested for was AIDS and Leukemia. It took them a while to get
to SLE. I remember the first 5 years being very bad. In and out of
hospital, various organ involvement. Then I was fine for about 10 years
with on and off flares which were easier to control by increasing my Prednisone levels. Five years ago I had a horrible flair. I developed
Vasculitis, got Gangrene on two of my toes, went on MASSIVE doses of Prednisone and even went on a prebooked cruise with my husband and stayed in our room the entire time! Came back and had a stroke, had my toe amputated and gradually got better. I am now in another vascular flare, not as bad though and was just diagnosed with Antiphospholipid Syndrome. Trying to deal with that now. Lots of decisions to make.
I remember being told that I had Lupus. I was in a room with a girl who just had a baby and was also newly diagnosed. Her husband left her because of it. So sad. We spent 6 months together in that tiny hospital room. When we were released, she just layed on her couch and wanted everyone to tend to her. I returned to work and tried to get on with my life. I remember visiting her and she was so depressed all the time and would not do anything to help herself, we finally drifted apart. I am happily married to a very supportive husband who loves me whether I am 300 pounds from Prednisone or not. He is my rock. We own a fine food/catering company. My staff are also very supportive of me and treat me with kid gloves. I am never down, I always have a smile on my face and I hardly every complain. I know that most people have worse problems than me. Someone once told me that if you get all your friends together and told them to throw all their problems on the front lawn and then go an choose one to take, everyone would always choose their own problems back. I think this is true.
Looking forward to meeting everyone!!
I am 45 years old and was diagnosed with SLE in 1986. I first presented with
uncontrollable bleeding (ITP) and spent 6 months in hospital. The first
things I was tested for was AIDS and Leukemia. It took them a while to get
to SLE. I remember the first 5 years being very bad. In and out of
hospital, various organ involvement. Then I was fine for about 10 years
with on and off flares which were easier to control by increasing my Prednisone levels. Five years ago I had a horrible flair. I developed
Vasculitis, got Gangrene on two of my toes, went on MASSIVE doses of Prednisone and even went on a prebooked cruise with my husband and stayed in our room the entire time! Came back and had a stroke, had my toe amputated and gradually got better. I am now in another vascular flare, not as bad though and was just diagnosed with Antiphospholipid Syndrome. Trying to deal with that now. Lots of decisions to make.
I remember being told that I had Lupus. I was in a room with a girl who just had a baby and was also newly diagnosed. Her husband left her because of it. So sad. We spent 6 months together in that tiny hospital room. When we were released, she just layed on her couch and wanted everyone to tend to her. I returned to work and tried to get on with my life. I remember visiting her and she was so depressed all the time and would not do anything to help herself, we finally drifted apart. I am happily married to a very supportive husband who loves me whether I am 300 pounds from Prednisone or not. He is my rock. We own a fine food/catering company. My staff are also very supportive of me and treat me with kid gloves. I am never down, I always have a smile on my face and I hardly every complain. I know that most people have worse problems than me. Someone once told me that if you get all your friends together and told them to throw all their problems on the front lawn and then go an choose one to take, everyone would always choose their own problems back. I think this is true.
Looking forward to meeting everyone!!
