I am beginning to become really frustrated. I have AOSD, and my doctors took me off of prednisone after an emergency surgery and other things. I am now back on 20mgs a day and I have to lower the dosage every week to see how my symptoms manage. To get a "final" diagnoses. And I know my doctor is doing her job. But god, this is getting so god damn exhausting.

I began work and I come home every night in horrid pain. Pain that makes me cry (I never cry from pain) and dry heave. It's horrid. And don't even get me started on the daily fevers.

I asked her about work, should I leave and get disability, she said to wait and see. Problem is I work where there are loads of customers and now I am on an immune suppressant.

I am just at the end of my rope here. There are only so many vials of blood I can give, so many stays in the ER and hospital, and so many days of feeling useless that I can take. I just want a treatment that WORKS.