My AS story began when I was a 19 year old missionary in England, pounding the pavement all day every day. I started getting right heel and foot pain that eventually led to some serious lower back and sacroiliac joint pain. Some days, I could barely hobble when I walked. EVERY day, sleeping was a nightmare. I would spend 15 minutes trying to roll to my other side, grabbing the sides of my bed and ending up drenched in sweat by the time I got there. I’d wake up exhausted and spend the day trying to figure out how to make things better. Do I sit more? Stand more? Walk more? Do I need to massage it? Nothing seemed to work, and the ups and downs of my pain seemed completely random.
One night the pain got so bad I ended up in the emergency room, where the doctor was sure I had some sort of sexually transmitted disease. I tried to explain to him that Mormon missionaries aren’t exactly prime candidates for STDs, but you know how it goes diagnosing this stuff. Eventually an MRI showed some bulged discs, which was how they treated it for the next six months. But steroids, NSAIDs, muscle relaxants, and even a shot in my back made little to no difference. I went back to the states six months later, a total wreck physically. I remember thinking I would never run again – and by run, I mean even from one side of a room to another. I would literally daydream about sprinting down the street and trying to remember what that feeling was like. As a pretty active kid growing up, I was heartbroken to think those days were over. Exercise was a pretty big part of my life.
Even in the states it was a long journey towards diagnosis. I did physical therapy for a few months with a renowned therapist in my area – only to have him bring my parents in afterwards and tell us all that, in essence, my pain was imagined (because he was unable to create real lasting improvement). For those who have experienced chronic pain, you know how infuriating that experience was for me. Fast forward a year or two, and I was finally referred to a rheumatologist. A few tests and an exam, and he knew right away I had Ankylosing Spondylitis. This was the beginning of a solution to me, and a relief in some ways despite how scary it seemed. After trying a ton of meds for a year or two and developing toxin induced hepatitis from NSAIDs in the process (rare, I assume), I was moved over to a biologic. It was insane to me how immediately my body responded to the drug. It was almost like a switch flipped, and suddenly my immune system was no longer fighting itself. I’m one of the fortunate ones that saw extremely fast and (so far) continuous relief from the right medication.
I’ve got a few small things I deal with these days, but I’m about as active as I’ve ever been. I go for distance runs, I go to the gym, I do yoga, and I am almost completely off medicine (I tend to give myself a shot every 3 months or so). I am grateful for every single day I get that is mostly pain free and active. I know others aren’t as lucky, and hopefully there’s hope to be had for people in those shoes. I’m glad to share my story with the community, and hope others find health and happiness in their own journey.
Nevada, United States of America
A Note from the creator of Faces of AS, Cookie Hopper
“It was important for me to do this, not for myself, but for each one of the Faces on this site and those who are still unknown. I wanted to show the reality of this disease and the courage it takes to live our lives. I wanted to honor those who have Ankylosing Spondylitis, who I admire and respect.”
Creator of Faces of AS, SAA Member, and Face 0062