Angie's Lupus Survivor Story

I am a 42 year old single African- American mom currently battling fibromyalgia, and adjusting to disabilng NPSLE -neuropsychiatric systemic lupus in a severe form involving central nervous system complicated by APS(antiphospholipid syndrome) that leads to chronic DVTs (blood clots). Here's my most recent anecdote of survival. Having given up ambitions of a career in medicine to live on disability benefits for the last decade, I was so excited to be in remission and starting a new job in June 2004. My dreams were defered again by a very sudden and aggressive attack with hemolytic anemia reducing my blood cell counts to 10% and shutting down my pancreas and liver. I narrowly escaped death. I contribute my survival to my faith in God and his grace to allow me to live in order to to raise my teenage son, who has no one but me. Once the crisis was over, I was completely paralized by the muscle atrophy of weeks of immobility in the hospital bed. Once home I quickly rid myself of walker and potty feeling euphoric from the high doses of IV steroids. Before the completion of a 6-month course of chemotherapy Cytoxin, I developed shingles in two quadrants of my face and relentless neuropathic pain. The side-effect of swollen feet kept me out of shoes and caused DVTs in both legs to be dangerously overlooked. A Greenfield filter was implanted to reduce the potential for blood clots to travel silently upstream causing pulmonary embolism and death. Before I could rid myself of the home nurse and port-a-cath, I was back in ICU with life threatening septiciemia, a systemic infection of my blood thats often the cause of death for lupus and cancer patients.