A.S. Face 1014: Grace

Face 1014

My name is Grace and I’m 50 years old. I’m a stay-at-home, homeschooling mom.

I was always an extremely active person, and did not have any sign of AS until my late 40s. I know this makes me very lucky. As a child, I would walk long distances just for fun. I began running in my late 20s and in my 30s I hiked the entire Appalachian Trail. In my 40s, after my son was born, I got into ultrarunning–running races longer than marathons, I began doing triathlons, learned to swim, and became an Ironman triathlete–in this event, you swim almost 2 1/2 miles, bike 112 miles, and then run a marathon, all in the same day. I was not fast at these things, never won anything or even thought I would win anything. I did it for the joy. I loved being out there. It was a spiritual experience, very meditative, just moving all day, on a journey.

Triathletes generally ride their bikes using “aerobars” instead of handlebars–you ride crouched forward, bent over very low on your bike, resting your elbows on these bars. In 2010 I became unable to ride this way because my lower back was stiff. I don’t let things like that get in my way so I just ignored it, adapted, and rode like a regular person, using the handlebars and sitting upright. I didn’t think much about it. Gradually the stiffness got worse, then my hips started hurting like crazy, and then one day early in 2012 I was sitting on the floor playing with my son and realized that my whole body was filled with the most intense pain. Everything hurt. Every joint, every tendon, every muscle. My joints would stiffen up and get very painful every time I sat still, but walking around was agonizing too. I was unable to exercise, but lying in bed was worse.

I went to a series of doctors and had the usual round that everyone with AS gets: it’s in your head, you’re a drug seeker, you’re faking it, we can’t figure out what’s wrong with you, therefore there is nothing wrong with you. All of my blood tests were (and still are) negative. No HLA-B27 gene, no inflammation, nothing. If you only looked at the blood tests, I looked like the healthiest person on the planet. It was made worse by the fact that I had such a long history of a healthy, active life. and also because I have a high pain threshold, hate complaining about pain, and try to be positive about everything. The doctors would look at me sitting there making jokes about how much I hurt and think I was nuts.

The last straw was when a local rheumatologist told me my back hurt because I had pulled a muscle. I was incredulous. As an athlete, I know what a pulled muscle feels like. It feels worse when you exercise and better when you rest. My pain, like no other pain, got worse from resting and felt better when I moved around. It was not like any pulled muscle I had ever had.

Fed up, I went to the Hospital for Special Surgery in New York. They specialize in joint disease and they truly care. My doctor there is great. He did an MRI and found a lot of inflammation in my sacroiliac. Bingo, you have AS. Even without the gene, even without anything showing in your blood. Symptoms are classic, the MRI is classic. Welcome to the AS club. He put me on Humira and methotrexate and they have really helped. Another thing that has helped is eating gluten-free. No wheat, oats, barley, or rye. It’s almost like the no-starch diet some people with AS are on, and it has made a huge difference for me. My whole family is on this diet now and we all feel better.

I feel very fortunate that my disease didn’t show up until I was almost 50. I had many decades of so much activity, enjoying health, and I got to do many physical things that most people only dream of doing. When I had perfect health, I used it. I am happy that I learned to swim, because swimming makes my back and joints feel better and I truly love it. I still try to run a few miles, I still bike some, but swimming is now my real focus, and I am grateful that I can do this sport that every doctor prescribes for those of us who have AS. I would love to encourage everyone with AS to get in the pool. Even if you can’t actually swim, just stand in the water and move your joints gently, or just float. Water takes away the heaviness of gravity on aching joints. It will definitely help you feel better, even if it’s just for a few hours.

New York, United States of America

One Response to “A.S. Face 1014: Grace”

  1. Dear Grace,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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