Hello lovelies!
My name is Meghan and I have a nice little collection of conditions, the newest of which is DLE. I’ve been living with Sjogren’s Syndrome since I was 15 (I’m 40 now) and mine is a more severe case. My tear ducts have been cauterized, my teeth have been replaced by implants and permanent fixtures and as an extra bonus, it has put me in the hospital 14 times with aseptic meningitis over the last 5 years. I also gave Fibromyalgia and Chiari Malformation. In April I developed a crazy rash with discoid lesions. It stung, itched, hurt and felt warm to the touch. 3 biopsies, 3 doctors and 3 months later I was finally diagnosed with discoid lupus. Over the course of the last five years I’ve been on heavy doses of prednisone, Plaquenil, Cellcept, Methotrexate, Imuran and Rituxan. I am scheduled for my first Benlysta infusion on the 25th and I. Cannot. Wait. This rash is miserable. Does anyone have suggestions on coping with it? Oh…and topically I’ve done Triamcinolone, Betamethasone, Desonide and Clobetasol.
Beyond my Spoonie life I am married to my soul mate and between the two of us we have four teenagers. I am also a pug mom to two adorable pugs. I am disabled and therefore get to be a stay at home wife and mom. I am a book addict, nap champion, tattoo aficionado and Betty Crocker extraordinaire.
I am looking forward to making some new friends and learning new ways to cope with this crazy Spponie life.
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