Many of you are here because you’ve read Cursed Cocktails, which tells the story of a blood mage suffering from chronic pain and his quest to find relief in a coastal town by the sea. Though it’s a work of fiction, many of Rhoren’s struggles are based on my own experiences with spondyloarthropathy.
This year, I’ve been named an honoree for the Walk to Cure Arthritis in St. Louis. To help raise funds for arthritis research, I’m sharing the story of my road to diagnosis, as well as hosting a raffle for everyone who donates. Last year, I managed to raise $1600 and I’m to do even better this year.
Here’s a little insight into what my journey to diagnosis was like.
What’s it like living with an autoimmune disease?
Before I was diagnosed, let’s just say it was not fun. I had a “mystery illness” for 4 years that none of my doctors or rheumatologists could identify. I had constant inflammation, 3 surgeries to repair torn tendons, and aches and pains throughout my body. My mental health was a wreck from not knowing if this was what the rest of my life would be like.
4 years ago, I had the worst bout of inflammation I’d ever experienced in my shoulder. Pain lanced up my neck and down my spine with every movement, so intense that I couldn’t turn my neck to the left without lightning-like pain causing half my body to seize up.
For almost 2 weeks, I spent 90% of my days bedridden, unable to do much more than alternate heat and ice in an attempt to find relief. I had pain shots in my back, went to PT, specialists, but nothing helped. It only seemed to be getting worse.
Finally, I was able to see my new rheumatologist. He looked at the inflammation in my neck and feet and said I likely had inflammatory arthritis. It took all of 5 minutes for him to diagnose me, but I guess that’s not surprising when you look like a mushy tomato ready to burst.
The next day, I had my first infusion. I sat for 3 hours while meds were pumped into my veins. I don’t know what I was expecting, but the euphoric relief I woke up to the next morning was not it. It was as if the inflammation had vanished overnight. The first time in 4 years I’d been pain-free.
It didn’t last, though. My quality of life is better than it has been in the past 8 years, but the pain and inflammation come and go. Even though I have infusions every 6 weeks, the discomfort never really leaves my shoulder or my foot.
That’s why I’m raising money for the Walk to Cure Arthritis. Because I hope that one day, there can be a real cure, and not just temporary relief.
If you’d like to donate, check out the link below. Who knows, maybe you’ll even win a set of signed books.
https://events.arthritis.org/participants/Steven-Rowland-2026
