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.

Confirmation

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.

My dental nightmare

Right now-- as this is being automatically posted by my Blogger account-- I'm setting out on the next steps in my journey to dental overhaul.

Ever since I was a teenager I've been told that, remarkably, all four of my wisdom teeth were fine; I didn't need to have any of them removed. Even when I would ask (several times later in life) about the fact that it feels a bit crowded in my mouth, I was told not to worry about it.

Now here we are: I began to have problems with a tooth back in January, and finally got in to deal with it late in March. It turns out that its problem arose from -- surprise! -- the presence of my wisdom teeth. They are too close to the adjacent molars, and make it impossible for those molars to get clean which leads to decay. I was blessed with a root canal for that problem tooth, with a crown forthcoming. I was also informed of the problems in the rest of my mouth.

So today, I'm having all four of my wisdom teeth removed. Then in a week and a half, I'll fly to South Carolina where my cousin (who is also an Endodontist) will complete three root canals in a single sitting. In the weeks and months to follow, I'll get the crown for the root canal I've already had, the three for the teeth my cousin is doing, and probably one other as well. Oh, and I also need a filling elsewhere.

So that's what I'm up to today. In a few months, about a third of my mouth will be some sort of synthetic dental work. Woo-hoo!

Obesity

There was a news report on TV recently that said that the number of dangerously obese Americans climbed from 15% to 35% in the last 30 years. This is a shocking number, and is worth commenting on.

First of all, I agree that more and more Americans (and it seems to be unique to our country's culture-- probably a confluence of a number of things, not the least of which is the sheer excess that defines us) are overweight, and many dangerously so. Without a doubt, this is a culture-wide problem, and one I will say more about in a moment.

But I also need to say this: I think those numbers are inflated-- and maybe greatly so. That's because they are based on the concept of the "Body-Mass Index" or BMI, which is a simple calculation based on your height and current weight. BMI is widely-regarded as an accurate measure of fat percentage, and medical science has determined that higher fat percentages are strongly connected to all sorts of health problems.

But BMI is not as accurate as a measure of body-fat percentage in many people. It is a formula developed in the mid-1800s, and people's body shapes, diets, and lifestyles were very different then. It assumes things like an average proportional body-build to height, which simply doesn't apply as people vary from the average heights (which, by the way, were very different 150+ years ago). In the mid-ranges of BMI, studies have shown that it fails to distinguish between fat and lean body mass. BMI is a popular tool among "the masses" even though it doesn't seem to be taken very seriously by doctors and health professionals; maybe this is because of our obsession with morbid thinness as a culture. One study concluded:

Although body mass index (BMI) has been adopted by WHO as an international measure of obesity, it lacks a theoretical basis, and empirical evidence suggests it is not valid for all populations.
A. Bagust and T. Walley, An Alternative to Body Mass Index for Standardizing Body Weight for Stature, Q J Med 2000; 93: 589-596.

How do I know this? Because BMI always calculates me as way outside of the categories that I should fit into. At my current weight, it categorizes me as obese. Now, I freely admit that I am overweight, and I am working on making corrections on that. But I'm not obese, according to my physician. In fact, if I lost all of the weight that I'm aiming to lose, BMI still shows me being overweight-- though my physician has told me that he doesn't think I need to lose any more than I've targeted. (BMI has my ideal weight at 210 pounds-- almost 80 pounds less than I am now.)

So I think we need better formulas informing us about obesity. But I still think it is a problem-- and it's one that Christians don't take seriously enough.

In a culture that is simultaneously increasingly obese and also obsessed with an unrealistic and unhealthy concept of "thin" as beautiful and ideal, one way that Christians could-- and should-- be counter-cultural (and culture-transforming) is to exhibit proper moderation in the way we think about food, weight, and body size. We should stop comparing ourselves to the magazine covers, TV and movie personalities, and other worldly icons; we should start comparing ourselves, and our current health and eating practices, to what is healthy and beneficial.

You want to know where I see this as most realistic? Witness the typical church dinner. Whether it is catered, a covered dish/"pot luck" situation, or something else, these seldom offer much in the way of healthy options. What if the next dinner at your church offered baked chicken instead of fried chicken? What if there were rice or roasted potatoes instead of mashed or au gratin? What if there were no desserts?

Outrageous... inconceivable-- I know.

When I first started seminary, one of my professors was new, also. He clearly-- obviously-- lost a fair number of pounds in the first couple of semesters. Not so many that he seemed too thin or gaunt, but he had shed 20 or 30 unneeded pounds. I asked him about this, and his response was, "there is a lot of positive peer pressure on the faculty here. It's a real culture of encouragement toward being healthy." Wouldn't it be great if most churches could be like that-- not pressure to be too thin, nor prejudice against those who are overweight, but simply a culture that encourages healthiness?

What do you think: what are some ways that your church could shift toward being a culture of health?

Setting two personal goals...

I'm setting out to make some healthy changes.

In July 2008, I stepped onto the scale and saw the highest weight I had ever been: 303 pounds. I'm 6'5", so I don't look very overweight; with clever wardrobe choices, I can mask the extra pounds fairly well. (The double chins are another matter!) But I set out then to do something about it. Marcie and I had done Weight Watchers before, so I started "counting points" and worked hard at it for a few months.

By late October, I was down to 273-- very encouraging progress. I had begun to stall, though, and needed to increase my exercise. I also wasn't getting enough water, and that was slowing the progress substantially.

Then we had Abbey and Caroline, and the holidays were just around the corner. My commitment to any sort of diet, exercise, or other effort ceased completely. I saw my weight slowly start to crawl back up.

I'm now at 287. Still far from where I was at 303, but I need to get back to it. And I need to do it very publicly, so that I have the accountability of everyone's expectations.

I'm starting back onto counting points. I'm also going to start exercising-- I've missed running terribly ever since high school, and hopefully I can get going with that. I'll try the "Couch to 5K" plan and see if my knees can stand it. If not, I'll at least get back on my bike (I miss that from high school, too!).

I have two personal goals in my efforts: to get my weight down to the mid-240s, and to run a 5K by late spring. (An alternative to the 5K goal, if my knees can't take it, is to do a Quarter-Century by myself by early spring on the bike.)

A quick update

For those who didn't know, I've been pretty sick the last couple of days: Tuesday afternoon I started feeling something coming, and I spent all day Wednesday laying on the couch, feeling miserable. Yesterday was better, but I was still fairly weak. I either have a really bad cold or a mild case of flu.

Thanks to so many of you who have called or e-mailed to wish me well; I am feeling much better today, though I'm still congested and feeling a little feverish. At this pace, I feel like I should be at 90% or better by Sunday. Please keep praying!