My story is so complex, it's daunting to share. I have a very rare genetic autoimmune disorder called ARPC1B Related Syndrome. For years the pain grew so did my giant lymph nodes. Had all the removals when they got too huge and painful to live with. Biopsies were so complex they couldn't decipher what was going on. It wasn't until I moved from MI to Tulsa and spent three total weeks in the hospitals down here that I got the diagnosis.

Biopsy from one hospital were sent to Mayo clinic due to the complexity and the biopsy from the second hospital were taking a long time to be read. Then suddenly on the second day home from a two week hospital stay I get a call at 9PM from my doctor: you have lymphoma.

I thought no way no way. They're just reading those biopsies wrong, I'll correct them in the appt I now had for Mon. But then I learned the result from Mayo clinic is the same right before the appt. And my new oncologist said it's just follicular lymphoma and treatment is needed because of the severe pain and low quality of life. But we can't do chemo right away because of my autoimmune disorder and my history of severe infections. And I'll need another bone marrow biopsy and a PET scan before we settle on starting a medication that starts with an R. My head space was just that, space. I didn't ask any questions. I didn't know what to say or do.

I'm all alone in this state. Going through a divorce. It's only been 7 weeks since I left my life in my mitten state. It's been nothing but bad luck and bad news since then. My legs are breaking down from how severe my vasculitis is and I'll most likely lose them soon. Work was nice for the first hospital visit but this last one not so much. Had to work the whole time. And I've had to work 15hr days all week this week since getting out, to try to finish a project and I'll have to work this weekend and through this upcoming holiday. Life just doesn't care.

It all feels like so much but I don't even have time to think about it. I don't know what to do. I haven't even unpacked my house yet but should I plan to lose my job and just run back to MI? Idek what to ask here. How do I help myself get through all this? I'm all over the place, how can I get myself to do what I need? It could be worse so why am I fighting this shadow growing over my head? How do I just not give up when every week is the worst week of my life?? How do I work while this is all happening?

Thanks for reading all this. And thanks for any help.