I’ve always been to embarrassed to talk about my diseases, as if I had something to do with getting them. If only I worked out more, or didn’t eat xyz or had the ideal body size, then my insides would be perfect too. As if I had this coming and admitting I was sick would be like telling people I was lazy or stupid. It’s hard to explain but it’s embarrassing and I always put off getting treated when I flare.

Something in November triggered a severe flare, or so I thought, involving severe abdomen pain and inability to keep down food - any attempt to eat caused vomiting and then hours of pain. So I stopped eating, and just worked to keep my electrolytes up, check my temp and tried to wait it out. I tried slowly reintroducing things a bite at a time, and avoided common trigger foods like dairy and fat and grains. It didn’t go away. But the hospitals here are overcrowded to the point where people are being treated in hallways, and they stay there for days instead of getting a room, and despite all the vaccines I’ve had the threat of Covid still terrifies me (plus the idea of being roomed in a hospital hallway for days with people everywhere? No way) so I put it off for 10 day. On day 11 like this I called my primary dr. (We are now on day 24). 3 rounds of blood panels later it looks like I now also have autoimmune hepatitis, on top of the SLE. My rheum referred me to a hepatologist to make the confirmation, I’d never heard of AIH but I get to have a liver biopsy to get another label added to my human defect codes on Wednesday. In the meantime I’m still surviving on bone broth (protein, yay!), electrolytes, medicine and fear. Everytime I’ve attempted to eat (I cave every 48 hrs or so because I keep thinking that time will help the inflammation… and I nibble on something light and easy to digest - like thin, thin apple slices or something, and yes I’ve tried every type of cracker). But I have the same reaction each time.

I’m tired, I hurt all over, I’ve stopped sleeping, I’m scared, and I feel very alone. There’s no one to really talk to about this, my family means well, but they’re all just so used to me living in pain that they don’t understand this is a whole new level of misery. If it wasn’t for Covid I would’ve walked into the ER 20 days ago so I’m also feeling angry at life in general.

Thank you for providing a place to put this burden down. It’s too much tonight.