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We have organized these stories into two categories: Your Stories -- stories sent to us at the Spondylitis Association of America -- and selections from The Faces of Ankylosing Spondylitis project.
We’d love your story as well! Send it to us at firstname.lastname@example.org
Tuesday, July 11, 2017
Like any good story from my 20s, my battle with ankylosing spondylitis started while drinking with friends.
We’d all congregated together for a street fair here, in southern California. I was 23 and intoxicated, surrounded by hundreds of other nigh-invincible street fair attendees. We stuffed ourselves full of food truck foods and street bar booze before deciding to stumble home.
It wasn’t until halfway through our walk that my right leg got to feeling a little uncomfortable. By the time I bothered to look down, my knee looked like it had swollen to nearly three times the size it should be. As though I’d stuffed a balloon up the leg of my pants.
At the time, I was living away from my parents in the days before Obamacare and had no health insurance. I spent weeks hobbling around on my bad knee, trying to justify waiting it out.
If I’d known back then that the swollen knee was just a peripheral manifestation of my ankylosing spondylitis, I imagine I’d have taken it a little more seriously. Peripheral manifestations can take place in any number of joints and usually act as early indicators of the disease, though the correlation is usually unnoticed until a diagnosis is reached.
In time, it became clear that I’d need to change my approach. I found myself a dirty little 24 hour clinic that would accept my cash and took up a spot in their waiting room. The doctor took one look at me, announced a diagnosis of bursitis, told me to take some ibuprofen, and then he left. What he didn’t know was that I had been popping ibuprofen like candy ever since the ordeal had started.
Later I landed a job that came with insurance and, with it, a whole series of doctors with different guesses about the swelling. To make matters worse, my other knee started inflating around this time, too. X-Rays and MRIs all came back clear, leaving no diagnosis for my massive knees.
Then the back pain started.
Waking up for work one morning, I got my first taste of intense arthritic pain while attempting to push myself up from my mattress. Not much of a morning person before this, my new found struggle didn’t help my disposition toward the early hours of the day. My boss, though, couldn’t disagree more. She made it clear that my first day calling in late to work for chronic pain shouldn’t become a habit.
One of the most common symptoms of AS is morning pain, I later found out. While sleeping, joints get stiff as the immune system attacks itself. The sacroiliac joint, that spot just above the tailbone, starts trying to fuse over time and the pain is pretty unbearable.
When I described my pain to my rheumatologist, a light bulb in his head lit up. Could my years of trouble walking and slow, pained mornings were the result of ankylosing spondylitis?
I finally had my diagnosis.
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