This past few weeks I’ve been dealing with a horrible rheumatoid arthritis flare. It started after the holidays and has caused me to miss time from work, avoid get togethers, and greatly altered my life. I’ve also been rekindling my affair with my trusty cane. Basically, nothing fun. Last year, I felt like my meds were failing, so I opted to change. It ended up being a huge mistake. I went from bad to worse on this new drug. It provided no improvement in my symptoms. My joints were swollen, pain was intense, and I felt like I had the flu. I went running back to my previous biologic drug and for a few months, I felt much better until I didn’t.
I’ve written a lot about my love/hate relationship with my cane over the years. I hated how everyone would stop me to ask “what did you hurt?” or if my broken leg from 10 years ago was giving me trouble. It wasn’t until my colleague Suzanne reached out to me and said, “None of us care if you come to work on on a unicorn wearing roller-skates” we just care abut you. I was allowing my cane to be a negative in my life. I’ve changed my attitude. Since then, when using my cane, my coworkers never focus on it, they focus on me. The cane is always in my car and I pull it out as needed. It hurts my hand, but helps me walk. Right now a win-lose or a lesser of two evils, but I prefer to think of it as my roller-skating unicorn right now.
Prior to my rheumatology appointment, I tried to rest, eat healthier, take supplements, and decrease stress. You know the thing all the “experts who don’t live with rheumatoid or autoimmune arthritis”(***insert sarcasm here) insist will cure you. Sadly, it turns out I need a large dose of prednisone to get my bad flare back under control. It will be 5 weeks of tapering followed by a search for a new treatment, possibly even returning to infusions. I’ve tried many treatments over the years, many have given me periods of decent functioning before fizzling out.
It’s all very depressing, but I’m grateful that I have a community of friends who live with autoimmune arthritis conditions just understand and can offer me advice and comfort without judgment. I often get questions as to why I share so much about my health online. It’s simple. For those of us who live day in and day out with chronic illness, it’s nice to know we are not alone.
I have my “Rheum Sisters”: Tiffany, Tami, Therese, and Deb who are my go-tos for advice and my AiArthritis family. But there are so many others who make posts on any given day and it’s like they are in my head. For example: Cheryl from Arthritis Life and Creaky Joints TikTok posted an ironic video of learning that some people in this world wake up pain free (uh, if that happened, I’d think I was dead). And Eileen from Chronic Eileen, who posted a photo of herself with red dots highlighting her hot spots. I joked to say mine who have to cover my whole body and viola….she made me this!
A great visual to highlight where the pain is located in my body. Basically everywhere.
I’m slowly getting my writing mojo back. My blog has been so focused on COVID-19 and Depression, that I had nothing to add to the world of arthritis. Well, I do. I may not be a unicorn on roller-skates, but I am an advocate hoping to help other patients on similar journeys know they are not alone.