Birthday Reflections on the Past Year with AS
I think serious reflection is an invaluable tool, especially when managing a lifelong chronic disease. It’s too easy to get wrapped up in the fluctuating day-to-day symptoms of ankylosing spondylitis, the morning stiffness that makes it hard to get out of bed, the persistent SI joint pain, knee pain, chest pain nagging for your attention, or the flare-up that arrived on-scene with a vengeance to disrupt your week.
Constant focus on the immediate effects of AS can make it difficult to see the bigger picture. That’s where reflection comes in. Reflection involves thinking about what has occurred in the past, realistically assessing causes and outcomes over a certain period of time, drawing conclusions and then making plans to move forward based on those conclusions.
Many of us do a bit of reflection with the start of a new year, condemning our tendencies to give into our worst impulses and vowing to enact more healthy practices in the coming year. But reflection can be useful anytime, and a birthday month seems a suitable time to reflect on the past year with AS, especially since I’m already faced with turning another year older and consumed with the thought of another year’s spondyloarthritis struggles!
A year of new symptoms
When I think back over the state of my disease over the past year, one detail is blatantly clear: it was quite the year for new symptoms. Here’s what I developed this year:
- The holiday season last year was a stressful time for me, since my wife and I were seriously contemplating moving across states. All of the stress related to job searching resulted in moderate gastrointestinal inflammation and pain. Luckily for me, this symptom returns infrequently and isn’t a big, ongoing concern.
- Around the same time I developed inflammation and pain in the inner shoulder/collar bone area. This pain does reoccur, and is exacerbated by a bad night’s sleep (really, what symptom isn’t?). It doesn’t help that I’m most comfortable as a side sleeper.
- One of my new medications (which I’m no longer on) induced a psoriasis flare. I’ve never dealt with psoriasis before last December. No new spots have emerged since I stopped the hydroxychloroquine, but several patches are still lingering as an itchy and painful reminder of the very real side effects of some medications.
- During my birthday month I developed costochondritis, or inflammation of the joints connecting the ribs to the breastbone. The pain from this symptom is fairly mild for me, accompanied by some pressure, but intensified when I exercise (especially during a recent hike at high altitude where I was forced to take deeper breaths).
Even though it was an extraordinary year for the emergence of new symptoms, I still feel grateful that their impact on my daily life is mild.
Medication management changes
I also experienced several medication changes during the past year. I first inquired about changing one of my medications last summer when I began to notice increased peripheral joint pain and soreness. I was and still am hesitant to switch my biologic, so my rheumatologist suggested shifting from sulfasalazine to hydroxychloroquine to help manage the peripheral arthritis.
I was on hydroxychloroquine for three months (feeling better than ever) before I realized that the psoriasis onset aligned perfectly with the start of this new medication. Not wanting to trade one symptom for another, my physician and I agreed that I should switch back to sulfasalazine. But it was hard to forget how good my joints felt on hydroxychloroquine, so I asked again about an alternative.
I’ve been taking methotrexate to treat the peripheral arthritis for nearly six months now. One thing that I’ve learned about this past year’s medication shuffle is just how important it is to advocate for yourself when it comes to your medication therapy. I spent nearly four years on a medication that just wasn’t working. I had no idea how much better I could feel on a different medication so I never asked! I won’t make that mistake again.
One might ask how are there positives after all of that? I get it--sometimes it’s hard to see the forest for the trees. But that’s what reflection is for!
Without a doubt, I’ve become more active this year. I am able to get out on at least one hike every week, and supplement my hiking with neighborhood walks with the dogs. In general, the increased activity has not resulted in flare-ups, though I do often deal with increased hip and knee pain during and for several hours after a hike.
While it took some trial and error, I arrived at a medication cocktail that is working really well for me. That’s a huge positive and step in the right direction.
I’ve also learned more about my disease this past year through research, discussions with doctors and other Spondys, and simply experiencing another year with AS. The value of this continued learning cannot be overstated. Learning about this disease helps me identify what I’m experiencing, advocate for myself at the doctor’s office, and look forward to another year of making decisions and managing my disease with confidence
Does reading AxSpA patient stories help you in your journey?