I promise I will have more posts from the American College of Rheumatology conference soon. I’m working on disseminating the information I learned.
When I was 5 years old, in the middle of November 1993, my SJIA hit. November 14th was the day that my family recognized the symptoms. We’ll never know for sure if this is exactly when the SJIA started up, but having this day as a ‘birthday’ for Arthur has been comforting for me.
When I started this site, my focus was really to create a space where I unpacked my health. From SJIA to the PTSD that was finally diagnosed in 2012 and more, sharing my personal journey was something that I needed. Having an outlet helped me not only explain my condition to my ex, but to friends, family, and a wider audience. This has brought me so many opportunities, from conferences to work to friendships.
Over the years, my focus has bounced around from research to relationships to healthcare. I often point out that I’ve gone from a literal sophomore in college to who I am now. All of these subjects are pieces of the problem patients face. There is no one issue we have to fix, but whole systems and ways of thinking.
I’ve also come to experience the world very differently than when I started. I was in 24/7 pain and living with my mother. Working three jobs to get through college wasn’t easy. Neither was going to graduate school with newer, then-undiagnosed conditions. I’ve also gone from no medication to failing several. Finally, over the last five years, I’ve been stable on Kineret.
The last two years have been… rough, from my divorce to moving multiple times to whatever this year has been. Usually, I try to celebrate Arthur’s birthday, marking the occasion with cake or something. This year, I don’t feel the same. 2020 has aged me in the same way it has many of us. I don’t feel like celebrating.
Part of that is absolutely related to my disease activity. My SJIA has been under control for a while. I finally have my pain under control, between my SJIA, hypermobility, and being on testosterone. I’m in a good place, and it feels weird to dwell on times when I wasn’t. That’s definitely a weird thing to acknowledge, but I know it’s true.
So, here’s to another trip around the sun with you, Arthur. It’s been weird.