"I Feel Like It's Unfair"
Last updated: July 2023
I was diagnosed with SLE a little over a year ago. At the time I was also diagnosed with Sjogrens and Alopecia...
Adding Lupus Nephritis to the list...
This story isn't about my diagnosis though. After a short trip to Europe and poor adherence to my medication, I was diagnosed with Lupus Nephritis - kidney disease - a few weeks ago. The malar rash, almost all over my body and a swollen face, scared me. Since then I've been taking Mycophenolate Mofetil, Prednisone and Plasmaquin religiously.
Why am I not feeling better?
"If I take my medication everyday, I should be fine right?". Wrong. I must be doing something wrong for my hair to be falling, I'm 25 years old and balding. In a matter of a week, I discovered NO hair at the back of my head. Lupus has destroyed my self esteem and broken my confidence. I feel like it's unfair that I've been taking my medication everyday, following my doctors orders, and I still have to live with this disease.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?