My Story

This weird disease I have is really hard to pronounce, and almost no one's ever heard of it. I had never heard of it either, until I described all my problems to a rheumatologist and he mentioned some possibilities, including ankylosing spondylitis. That was in October 2012.

Since then, I've been learning a lot. Here are the basics: Ankylosing Spondylitis (pronounced "ank-ih-low-sing spon-dih-lie-tiss) is an auto-immune disease, a form of arthritis that causes inflammation and pain in the spinal joints and can affect other joints and body systems as well. The name comes from "ankylosing" which means fusing, and "spondylitis" which refers to inflammation of the spine. (Fun bonus fact: It also sounds a lot like a cool dinosaur - the ankylosaurus, who has fused plates in its back as a protection against predators. So, I might be having all sorts of problems now, but if a marauding T-Rex comes around, I'll be all set.) If you want to read more about AS, you can check out the Spondylitis Association of America's great website here.

For me, AS looks like this: I dealt with chronic back pain for about 10 years, with no explanation or relief even after trying everything under the sun. When I started to have pain in other joints and an increasing feeling of being unwell, my primary care doctor sent me to a rheumatologist, who diagnosed me based on damage to my sacroiliac joint (the telltale sign of AS), several indications in my bloodwork, and an assessment of my symptoms. When I got home and looked at information about AS, I felt like every article was written exactly about me, which was a sad but also strangely comforting experience, after spending years wondering what was going on.

Anyway, it's been a bit of a roller coaster since then, as my disease continues to be rather active. I had a nasty bout of iritis (inflammation of the iris) a while back that was a bit scary, but I've had no problems with my eyes since then. My main issues right now are inflammation in my back, hips, and SI joint, as well as severe plantar fasciitis that has not responded well to treatment and makes it difficult for me to stand or walk for more than a minute or two at a time. I have good days and bad days, both physically and emotionally, but overall things are fairly stable right now.

It's been a hard journey, but I am happy to say that I am finally feeling at peace with wherever this road takes me. I am blessed with an amazing husband, children, family, friends, and faith community, and I have so much to be grateful for. God has been very near to me as I walk this path, and I know He will continue to strengthen and guide me, whatever comes next.