T.B.L.
Diagnosed at 60

What do you want others to know about lupus?

Lupus is what I call a "life Limiting Disease." It curtails normal, everyday activities, & makes one aware of "conserving one's energy. ...So frequent naps (when necessary) become a prt of the Lupus patient's life as well as rashes (on the body & face) various types of eczema, staph infections, joint pain, etc ...

Why is lupus a cruel mystery to you?

My symptoms began surfacing when I was 22 yrs old. ..They started w/frequent dental & oral surgeon visits, then staph infections, eczema, & exhaustion. ...When I was in college, I lived on No Doz & black coffee. ...I was so exhausted that I stayed in bed most weekends--not accepting phone calls & w/out interaction w/others. ...This went on for yrs., & I would call these wk ends "My Me Days!" ..I was so tired after wrk that I would fall asleep watching TV. ..If there was something urgent I had to do, I always reverted back to lots of black coffee & No Doz. And this is how I lived my life. .. I was diagnosed as having mononucleosis (3-4 times) a slow thyroid, lacking vitamin C-- and I could go on & on. However, 10 yrs ago, my very dry eyes lead an ocular plastic surgeon to suggest I had Sjoegren's--which I ignored bc I had never heard of the disease. ...However, last yr., a large rash appeared on my face, & I went online to search sjoegrens-- which is where I identified the "butterfly rash." I made an appt w/a rheumatologist, & was diagnosed w/Lupus. So my long & painful journey was over (I stopped blaming myself & feeling inadequate). I understood! And since knowledge is power, I am presently able to handle/control my life & Lupus-instead of Lupus controlling me. I am finally free!

Support this Voice