What do you want others to know about lupus?
Lupus is an overwhelming and terribly misunderstood disease. If you ask anyone if they know what Lupus is, they'll either say "no" or "yeah, I know someone who has it and they are just tired all the time." In actuality, Lupus is a disease that can suck the life out of you, if you let it. Because it affects everything, each day is an adventure.
Why is lupus a cruel mystery to you?
I was first diagnosed with Mixed Connective Tissue Disease. The main components are Lupus and Scleraderma. My Rheumie told me that I would have a 10 year life expectancy. I've been hospitalized for a TIA, thrombocytopenia and C-diff. Nearly died this last time. I've never been in remission and this year I'm celebrating my 21st year. Go me! I still work full time because I need the medical benefits, however, each day is a struggle just to get out of bed. I do miss a lot of work due to exhaustion, joint and muscle pain and migraines. My body has morphed into what can only be compared with the Michelen Man logo. About 10 years ago, I suffered from CNS Lupus and had to endure 18 months of IV chemo. I still have a great deal of trouble with my short term memory and it has exacerbated my dyslexia so working with numbers is difficult. My lungs, heart, liver, kidneys and central nervous system are all involved as well as all my joints and muscles. I rarely go outside for anything more than going to my car and back. Sometimes I feel like a prisoner both in my own home and also in my body. I take 16 different medications a day and they each take their toll. I've been blessed with a very caring husband and two amazing children. They make my life worth living, even with the pain.
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