06/25/2026
Since I’ve been recovering from hand and wrist surgery and dealing with the pain of uncertainty with my bone health, I’ve been reflecting a lot lately on my chronic illnesses and how they’ve shaped the way I have to approach life. I’ve been dealing with severe depression off and on since my initial diagnosis of CRMO/CNO (chronic recurrent multifocal osteitis) almost 20 years ago, not to mention other complications and diagnoses since (ADD, OCD, medically induced lupus, fibromyalgia, reactive arthritis, eczema, migraine, hEDS, to name a few 🫠).
As a child my back broke from my body attacking my bones and I also dealt with intense pain in other areas from bone lesions of massive inflammation stemming from inside the marrow. Essentially my cells didn’t know when to stop and the destruction looks like my bones are moth eaten at times. I’ve been on medications since my diagnosis, and have had probably 50+ MRIs, x rays, CT scans and more. I was on IV meds for 5-10 years to try to dampen my immune system and luckily with my aggressive initial treatment Ive been mostly in medical remission (but that’s kinda an off and on thing).
Obviously living with chronic pain is day to day, and while I don’t know if I have any active lesions today, I have been dealing with pretty severe fatigue, and brain fog, and my body’s recovery from my surgery has been more painful and inflamed than it should be. It’s hard to hang on to threads of hope for so long but every day I’m able to function is a small win. Some days I just wanna lay in a hole and cry though.
Here’s some images and art I made in the past about life with CRMO-and some glimmers of hope in the form of the published research I’ve been a part of for the past 6+ years. To be a coauthor on articles in scientific journals is fairly surreal but I’m grateful I’ve been able to lend my art and lived experience to benefit current and future patients. Anyway thanks for listening to my Ted talk-go look up CRMO (CRMOawareness.org is a site with some of my graphics) and support folks with rare diseases ❤️