Hi David,
I am with you. I am so glad I found this site. I was initially diagnosed in Oct 2020. I have been very very sick, and in pain ever since. I have seen 10+ specialists, including The Mayo Clinic in Rochester. In April of 2021 I had laprascopic surgery with a biopsy of my mesentery that confirmed the diagnosis of Sclerosing Mesenteritis. I am currently apply for disability and waiting an answer while I continue work up with Mayo and OHSU (here in portland, OR). If you or anyone else has advice or help about disability insurance or anything else, i would greatly appreciate it.

in regards to your request for guidance I can tell you what I do on a day to day. I eat very small meals frequently throughout the day, and this alleviates some symptoms I have with eating. I am also on round the clock pain meds. I cant sleep well at all due to pain so I take short naps very often. I also find short small walks around our house, 10 mins or so, helpful. If I sit for too long, or walk for too long the pain gets worse. Lastly, advocate and push for yourself as much as you can. Dont let doctors tell you no. Fight with all you got, cuz no one else will fight for you as much as you can. I hope this all helps.