A.S. Face 0817: D.B.
I have clear memories of my father limping around in the mornings, his breath hissing through his clenched teeth. I remember saying, “What’s wrong, Daddy?” and him answering me with comic stoicism, “I’ve just got a little hitch in my giddy up.” My mother has had severe RA since she was 8 years old and is in a wheelchair; I think her visible disability overshadowed my father’s pain. After my parents divorced when I was young, I rarely saw my father and he died in 1997. By the time he died, he had the classic hunched over posture of someone with AS, but I never heard the term. A few months after he passed, I returned from an amazing two-week backpacking trip (during which I summited a 9,000 ft. tall mountain) with a severe kidney infection that was resistant to treatment.
One morning after my third or fourth UTI, I woke up and could not get out of bed. The SI joint pain hit me out of the blue like a bomb. It was mind-eviscerating, reality-altering, thought-searing pain. I was a 22 year old in perfect health – a lean, mean, mountain-climbing machine, but the pain wouldn’t go away no matter what I did. It got worse and worse and spread down my legs to my feet and to the ball joints of my hips. In the beginning, I experienced some scary IBS symptoms involving the loss of terrifying amounts of blood. I didn’t have health insurance and actually charged a sigmoidoscopy on my credit card. They found nothing. I saw every doctor at my University’s clinic. Each practitioner viewed me with a skeptical eye. One pointed to my backpack and condescendingly said, “That’s the problem. You spend too much time carrying around books.” Another told me that depression could cause “discomfort” and referred me to a school counselor. (To any physicians reading this: Please, please strike the word “discomfort” from your vocabulary. Minimizing a patient’s pain is not an effective diagnostic or treatment strategy.) Everyone else said it was stress. I remember thinking, “If I showed up bleeding from a head wound, would they give me a lecture about stress and send me on my way?” In the early months, my college boyfriend was the only person that believed me. He took me to the emergency room several times because I was in so much agony I couldn’t speak. My memories of the middle-of-the-night visits are hazy because of the pain, but each time the ER dismissed us without even taking x-rays or examining me. The first time they told him it was a strain and gave me a prescription for two Percocet. The second time they dismissed us as seeking drugs. I never asked for drugs. If they had actually worked, I could have easily found drugs in a college town. What you can’t get from your friendly college drug dealer is ANSWERS. Instead of turning to a life of illicit drug use, however, I started limping to a Chiropractor who would treat me for whatever cash I could give him. He was a sweet, caring man of the Woodstock generation who took x-rays, noted several deformities in my neck and spine, and told me my hips were out of alignment. He spent a lot of time with me icing my SI joints and doing adjustments. The first two years were murder. Looking back, I have no idea how I kept working and finished college.
Over the next ten years the pain fell into a pattern predictable for its unpredictability. I would go through three to twenty four months of minimal or no pain and then it would hit me again – lasting a few hours, or days, or months and varying in severity. As it slowly moved up my spine, the pain was less severe, but the fatigue got worse. I had an episode of costocondritis that lasted through most of law school. I had an episode of unexplained weight-loss where I wasted away to a skeleton, followed by episodes of frustrating weight-gain. Although I jokingly referred to the problem as “assritis,” it honestly never occurred to me the pain was caused by arthritis. My mother’s arthritis has deformed and twisted her body, but I look fine! In my darkest moments I actually wondered if I had some rare psychiatric problem from watching my mom be in pain my whole life, like a hysterical pregnancy but more painful and no phantom baby. They told me I was nuts and I started to wonder if they were right!
In 2007, I had my first bout of uveitis. I was traveling in a remote part of a very rural state for work and there were no ophthalmologists for hundreds of miles. I suffered for a week and finally went to a Wal-Mart and begged for help. The optometrist was gone for the day, but the tech on duty examined my eyes, told me the inflammation was a “four plus,” asked me a few questions, and wrote “HLA-B27” on a piece of paper. He told me to come back the next day to see the optometrist. I went back to my hotel and, with one good eye, started researching HLA-B27. Within about five minutes, I knew what had been plaguing me for 10 years. I was floored – I spent much of that night lying in bed alternating between anger, thankfulness, hysterics, and relief. I had a name for the monster. The next day I shared my suspicions with the optometrist and she was disgusted with the tech. “You can’t have Ankylosing Spondylitis. Women don’t get it. Everybody gets little aches and pains, but iritis is usually idiopathic and you’ll probably never have another episode.” Unfortunately, she was wrong on all counts. By then, I was 32, not 22. I had good health insurance, connections at a major research university, and no longer believed in the infallibility of the medical profession. I made some major noise and a few weeks later I tested positive for HLA-B27 and was formally diagnosed. The MRI’s showed significant SI damage and damage to areas that hadn’t even hurt that much by comparison. I’ve also suffered many bouts of stubborn uveitis since then, including one that lasted two trimesters of a miserable (but ultimately successful!) pregnancy.
I’m so thankful today to have a wonderful team in my corner – fantastic GP, Rheumatologist, Ophthalmologist, physical therapist, massage therapists, a great counselor, a compassionate boss, and a very supportive husband. I’m following a low starch diet, practicing yoga, exercising, and taking it easy on myself during flares. I walk a very thin line between pushing myself and accepting my limitations. I try hard to be honest with myself and work out the difference between making excuses for and being gentle with myself. I know that the London diet hasn’t been validated by medical science, but I don’t care because it has been validated by my body. I don’t follow it religiously (I eat some low starch vegetables and fall off the wagon entirely sometimes) but I note a dramatic reduction in fatigue, mental fog, depression, and pain when I adhere to it. The fact is: Medical science is in the infancy of its understanding of autoimmune diseases like AS. I listen very carefully to my body and what it tells me because it has never lied to me.
My body isn’t perfect, but it is still a marvel and I’m so thankful for it. I’m even thankful for the pain. I’ve used it to fuel my passion for life. I’m even, in a way, thankful for the delay in diagnosis because I have done a number of exciting things I never would have been able to if I had known earlier. The one thing that I haven’t made peace with is the possibility my daughter could have inherited this disease. Time will tell.
Washington United States of America