Monday, September 3, 2012

Ankylosing Spondylitis

[From Pastor Ed… September 2 and 9]

It's been about 13 months since Marcie and I flew out to Tucson from Tennessee to interview with Dove Mountain Church! Here's a lesser-known story from that trip, and how it has had a major impact on my life.

The Session and Search Committee had seen fit to rent a car for Marcie and I to use while here, so on that Monday, prior to going to the airport, we had to return that rental. Bob an Kim Ritt met us at the rental office, and we loaded into their van to ride out to the airport. I was glad for one more opportunity to interact with Dove Mountain folks before leaving.

I could tell when we got in the van that something was troubling Kim; this was toward the beginning of the time of her father's (still ongoing) battle with cancer, and I supposed that perhaps this was what I detected. However, while en route she received a phone call. Without trying to eavesdrop, I nevertheless heard her say something to the effect of, "that's not the diagnosis you wanted." Her heavy-heartedness seemed to increase after that call, though she still generously gave us her attention.

A few days later, in an e-mail including other matters, I asked Kim about that phone call; I wanted to know if there was some particular way I could pray for her. She told me that her daughter, Katie, had been diagnosed with something called AnkylosingSpondylitis, which Katie's father also had, and that it would likely mean lifelong complications for Katie.

Backing Up…

Before this point, I had been having trouble with my back for about two years. At first it was just gradually-increasing pain and stiffness, but eventually it reached the point where I had physical trouble getting out of bed each morning — I had to use a hiking staff that I own to push myself up with my arms, as my legs and lower back couldn't do it. Interestingly, though I could barely walk upon rising from bed, by the time I hobbled to the bathroom I didn't need the staff anymore, and by the end of my shower I was "loosened up" enough that I could move (mostly) normally, though with pain at times — particularly when I had been immobile for a while. There were other complications too, and I tried a number of different approaches to handle them.

Eventually I went to the doctor, when it became clear that this was more than just stiffness or temporary muscle tears or something, and that things like ordinary stretching wouldn't address it. One doctor I saw gave me steroids, which offered some temporary relief from some of the pain, and initially explored a diagnosis of gout. Another doctor didn't dismiss gout outright, but upon closer examination of x-rays believed I was dealing (mostly) with a combination of early-onset arthritis in my back, along with extreme tightness in a cluster of muscles in my back and upper thighs.

I started a standard anti-inflammatory drug for arthritis, and also went to a Physical Therapist for a couple of months. He taught me a battery of stretches to do every day, and also assigned me some workouts using specific machines (which I did at a local fitness center). Occasionally I missed one of my doses for the anti-inflammatory drug, and I could "feel" it when I did: I was stiffer and a bit sore. More or less, though, the pain was significantly reduced — almost eliminated — and I figured that we had kicked it.

During a few weeks of travel, however (when I was away from the gym and not as attentive to stretching), some of the pain came back as well as some new pains. This was actually right before interviewing in Tucson — some of the pain gave me a bit of difficulty during my interview weekend, but mercifully it wasn't too bad. Still, this time resuming my stretching and exercise machines didn't address it as effectively, and one of the new pains (in the ball-joint of my hip) made it very difficult to do some of the exercises I was used to doing, like walking on a treadmill.

Picking Up Where We Left Off

My response to Kim was yes, of course I would pray, and I was sorry for Katie's diagnosis. Meanwhile, I had no idea what Ankylosing Spondylitis (or AS) was, so I Googled it; I thought it would be helpful to know a little bit about the trouble that my (hopeful, at that point) future fellow staff member's daughter had.

In reading through the descriptions and symptoms of the disease, I was floored; one of the websites I visited listed some basic symptoms that indicated likely diagnosis:

  • Onset is usually under 35 years of age
  • Pain persists for more than 3 months (i.e., it is chronic)
  • The back pain and stiffness worsen with immobility, especially at night and early morning
  • The back pain and stiffness tends to ease with physical activity and exercise
  • Positive response to NSAIDs (non steroidal anti-inflammatory drugs)

There were other symptoms, I found: pain in the lower back, buttocks, and sometimes knees, ankles, and other joints; onset was "insidious" (slow coming on, rather than "acute" or sudden); it mostly manifests in men; it can cause increased fatigue and reduction of energy. ALL of these symptoms described me. (There is also a genetic marker that 60% of men who have AS also have, so they believe the two to be related in some way.)

The more I read about it, the more I saw myself in the descriptions. A few days later, I told Marcie, "you know me— I'm not typically a hypochondriac, looking for a disease to own. But I'm about 95% sure that this disease is what I have."

What do we do about it, she asked? I told her I would need to see a Rheumatologist, who would give a firm diagnosis, and that I thought it would take a while to get an appointment. By this point, I had accepted the call to move to Tucson, and thought it might be best to wait until we moved. Meanwhile, though: if this IS what I had, then treatment usually consisted of an anti-inflammatory drug, stretching, and exercise — all things I was already doing. So it probably wouldn't hurt to wait.

I still had this increasing trouble with my hip though; soon enough I went back to my doctor about it, and while there I mentioned my suspicions about AS. She looked at my x-rays again, and said my spine looked like a textbook case for it. She wanted to do the bloodworm required to look for the genetic marker, but agreed that I should definitely see a Rheumatologist when I get to Tucson.


It turned out that I didn't have the genetic marker, but that doesn't rule out AS as a diagnosis. I still needed to see a Rheumatologist.

Shortly after we moved, I was talking with a Deacon whose wife has Lupus; she has seen nearly every Rheumatologist in Tucson! I told him this story, and he offered to ask his wife to help me get an appointment with her doctor. She called the next day, and had spoken to her doctor's office manager; they had agreed to take me on as a patient. I needed to call the office manager to set up an appointment.

When I called — on a Wednesday — I was told that, technically, the doctor wasn't accepting new patients, and his next regular appointment was in April (this was early November). However, they would try to work me in sooner.

She called back on Friday: they had an appointment for me on the following Tuesday! So in I went, and began to confirm the diagnosis of Ankylosing Spondylitis. Officially in late winter, the word came back: I do, in fact, have AS.

What This Means

AS is not curable; as of now, it appears that I will always have this disease. Once upon a time, this meant that I would eventually become severely stooped and immobilized as my back did strange things. Richard Riley, who was Governor of South Carolina when I was a kid, had AS; he died in 2001, and essentially he suffocated from his back bending him over so much. AS is not easy on the body.

More recently, however, some great advances have come about. While it can't be cured, there are medications available that treat many of the symptoms drastically. My doctor has told me that, using certain drugs, I could basically be symptom-free.

These drugs have complicating side-effects, though, and I'm not ready to start them. For now, exercise, stretching, and my regular anti-inflammatory drug are largely sufficient. My pain is well-managed, and most days I have very little struggle with it.

It does impact my life in some significant ways. When I was in high school, I played basketball and ran track and cross-country; now, I can't do either, because they are high-impact sports. I have trouble with long walks (like many hiking trails), and I wonder about things like shooting sports (I used to be an avid hunter) and how they would affect my back.

Overall, I'm blessed that my AS doesn't affect me more than it does. While AS isn't common, I've met several others who have it (or someone in their family does); I'm aware that others struggle with their AS much more than I do mine. While I pray for their healing and recovery, I'm also thankful that my AS isn't nearly as bad as it could be.

I don't have any reason to believe that AS will keep me from doing what is most important to me: enjoying my family, serving the church as a pastor, writing, playing music. I have a good life, and I'm grateful for what I have.

If you think of it, I would be grateful for your prayers: that my symptoms would continue to be manageable, that I wouldn't be hindered from serving God or others, and thanksgiving for how God has provided great support and care for me throughout all of this.

1 comment:

  1. Thanks for sharing, Ed. I pray that the Lord uses this to his glory (but gently!)