What do you want others to know about lupus?
I want others to know that while there is not a cure, you can live a successful life with Lupus. You have learn to have the attitude of "I have Lupus but Lupus doesn't have me." Learn all you can about your own body and triggers so that you can be an active part of your own treatment. Help your doctors help you!
Why is lupus a cruel mystery to you?
Lupus can mimick so many other autoimmune diseases that it is difficult to pinpoint. I originally got sick at age 15 with cryptococcal menigitis and doctors could not explain how I could have contracted such a disease. It was 3 years later that I was diagnosed with Lupus and they came to the conclusion that my immune system was so low that it had to be the reason I go it. So many other auto immune diseases have evolved since my original diagnosis of Lupus that now its not just Lupus but Mixed Connective Tissue Disease. I see and hear about so many other patients who have problems with their heart and other internal organs that I use to wonder if I really had it but I have learned that it does effect different people in different ways. My biggest problem has been with my skin and I guess the white matter of my brain because I have had bacterial and fungal menigitis several times and very prone to migraines. I'm also prone to vasculitis and skin ulcers as well. For awhile, it seemed like everyone other year, I was being diagnosed with another autoimmune disease. It finally got to the point I would say, "ok Lord, I realize that I am your vessel, and for every new diagnosis, you give me a testimony to share with someone. This year, who will I come in contact with that my story will impact?"
Support this Voice
You support this voice
people support this voice