I’ve had sarcoidosis since 2011. I am almost 65 years old. Mine has never spread to my lungs. However, CT has shown moderate amount in my chest. It feels as thought my chest cavity becomes squeezes. I have been to pulmonologist, internal med, rheumatologist, neurologist. Even made a trip to Rochester Mayo. I’ve had biopsy of node, mediastinoscopy with the thinking of Lymphoma. So far no mess work. Prednisone, methotrexate, Humira and Imnuran. About 4 years ago I woke up one morning deaf in my left ear. Seems to be nerve related. Two years ago I deleloped steroid induced glaucoma. I now have no vision in right eye and left is slowly declining. From that I can not take any steroids. Never had a spinal tap, don’t know why. I have no energy, hot and cold, unstable on my feet. Also have Type 2 diabetes and neuropathy in legs. Take 2 pain pills and 4 Excedrin a day to get by. Read a little on a Nook or a tablet. Water my flowers and sit around a lot with a fleece throw year round. Started disability 2 years ago. No problem. No lawyer. On Medicare now. Have gone from 215 to 175 in this process without trying. Live in South so it can get hot/humid. Went to beach with family ( I can’t drive) a month ago. Just sat in condo babysitting six month old.
All in all not a fun way to live and worsening. Get up at 7 hurting. Take Lotitab have coffee. Read tablet. By 9:00 back in bed till noon. Eat a lite lunch, take Excedrin and back to bed. Up about 3 shower/shave. Take another Loritab. Help wife a little with dinner.
Then water plants outside and take dog on a very short walk when I feel like it. Back in, bet PJs on and go to bed 8:30 with 2 Excedrin. May read some evenings.
Also forgot I get 12 eye drops a day for my eyes. Expensive little bottles!! That’s about it. Any ideas?