Assembling a Care Team for Axial Spondyloarthritis
Avengers assemble! I mean, AxSpA care team assemble! My husband, Keegan, was diagnosed with AxSpa over 6 years ago. Before his diagnosis, our biggest problem was figuring out what exactly was going on with his back and hips. But once we got that answer and closed one door, many more opened. What does it mean to have AxSpa? Which treatment makes the most sense for him? Who's the best to treat this disease? Over the years, we've continued to collect and assemble a care team. Although most of his disease is managed by a rheumatologist, they aren't the only one crucial to keeping Keegan healthy, happy, and with minimal pain.
So, what goes into a care team for Keegan? A bunch of pieces: rheumatologist, general practitioner (AKA family doctor), pain management specialist, physical therapist, and a talk therapist.
The right rheumatologist and general practitioner was key
When we lived in Philly, we were fortunate to find an amazing rheumatologist. And this was the toughest part. Keegan searched online for days, reading reviews, and eventually finding a rheumatologist who was: in-network, specialized in AxSpa, and had consistent positive reviews. It took 4 months for the appointment, but the wait was worth it. She treated Keegan like a human and spent an hour with us at his first appointment.
But another side to this coin was finding a general practitioner. Sometimes we didn't know if Keegan's symptoms were a cold, or side effect from a medication or something else entirely. We opted to have the rheumatologist and general practitioner in the same health system. That meant sharing test results, X-rays, etc. was off our plate. They were in the same medical system!
Pain management is best done by specialists
We assumed that Keegan's rheumatologist could best help manage his pain. While she did provide some advice, she pointed us to a pain management specialist and physical therapist. In Pennsylvania, medical marijuana is legal for Keegan, so he visited a pain management specialist who was certified to prescribe medical marijuana. We figured the more options, the better!
Physical therapy provided a lot of relief for Keegan. One of the biggest issues 6 years ago was his mobility. A high level of inflammation meant pain and immobility. So much so, he often needed help with everyday tasks like tying his shoes. While at first, the physical therapy exercises seemed basic, Keegan began to regain flexibility and strength. It's been 4 years since Keegan last saw a physical therapist, but he's heading back to seek out new exercises to manage pain and strength.
It's not a care team without mental health support
As often happens in the US, the treatment of chronic pain and illness focuses on the physical aspect. But to be diagnosed with a chronic disease at 24 is heartbreaking and shocking. It's taken a toll on both me and Keegan to process the emotional and mental aspect of all of this. It wasn't until the last year we sought out therapists. It took us years to accept that needing mental support was equally as important as physical. Plus, I know Keegan's #1 flare-up trigger is stress.
Who else have you found helpful when assembling a care team?
Can you tell when a flare is coming?