what is ankylosing spondylitis

I live with a life-long condition. I live with a life-long chronic pain condition. I live without insurance with a life-long chronic pain condition.

I live with ankylosing spondylitis.

I live with an eight-syllable condition that can roughly be summed up as spinal arthritis. Ankylosing spondylitis (aink-uh-loze-ing spon-dee-lye-tuss) is a condition where your spinal and sacroiliac joints (see a great picture of my pain here) are inflamed – all the time. This constant inflammation leads me to sit bent over, smelling regularly of Icy Hot and with a heating pad wrapped around me. Eventually, as an ankylosing spondylitis (AS) patient, I can anticipate the fact that my spine will fuse together. Yes, fuse together. This leads to immobility of my own spine. My Grams died with “bamboo spine,” and until I was formally diagnosed (two years ago), I didn’t realize that I might have the same problems she did. (On top of her Alzheimer’s, which research shows skips a generation so OH GUESS WHAT that would be me!)

Ankylosing spondylitis may not only affect my back. Eventually, my AS can travel. It can move to my eyes, my heart, my lungs and my kidneys. I have to treat those parts of my body with more caution than most people for fear of them stiffening like my back. I have a hard time remembering that … I’m not always very nice to my body. It reminds me when I’m not.

Ankylosing spondylitis goes hand-in-hand with other arthritic conditions, such as reactive arthritis, psoriatic arthritis and even the arthritis that comes with both Chron’s disease and ulcerative colitis. (Doctor Google freaks me out, I will *not* search for those links. Google it yourself. If you leave comments about those issues, the AS fairy [different than the ASS fairy] will strike you with back pain tomorrow.)

A big term to describe all of this stuff? SPONDYLOARTHROPATHIES. First, try to say it aloud. Go ahead, I’ll wait; I know it has a lot of syllables. THEN: Google that, beeshes. Although AS is more often found in men (3x more common), I get to be in the subset of women that it touches. It’s great, you should try it some time. Sign-up sheets will be outside the music room on Tuesday.

When I say that my back hurts, that my spine aches, or that I just need to lay down, this is why. My spine is FUSING TOGETHER. The bones are continually growing and they’re growing into one another. It’s not as simple as a “take an Advil” option for me. It’s not even as simple as stretch, exercise and take an NSAID with mine.

Sometimes it’s all I can do to actually lay down. Often times, waking up in the morning is associated with a series of stretches to re-arrange the ligaments that are in the “wrong” place. There is a reason I keep five pillows on my bed. There is a reason I only really like to spoon while lying on my right side. (I also like to just be the little spoon.)

Oh, and I have scoliosis, so square the pain and you’ll be living with mine.

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