I was originally diagnosed 15 years ago. Had the classic butterfly rash across my face and lesions on my arms. Took plaquenil and steriods and it went into remission. 2 years ago, it came back and nothing is getting this under control. Constant red spots all over my face and scalp. Hair falling out and the impact on my self image is huge.
Everything I loved about my life... gardening, fishing, swimming, deer hunting, walking the dogs... All of that now creates huge anxiety if the sun is out. It does not seem to matter what I wear or how much sunscreen I use. If I go outside in daylight, the spots and rhe hair loss get worse.
On the weekends, I do not even want to get out of bed if the sun is out.
I am alternating between severe anxiety and depression. Intellectually, I know I could have a worse disease. But, emotionally, I am falling apart. Plaquenil is doing nothing. I even invested in an herbal solution which is also doing nothing. How do you cope?
I feel like I have disappeared... everything that made me happy is now a risk and I am not sure how to proceed.
Your insights would be appreciated!