AS? What the heck is AS?

AS? What's AS? I hear this question all the time. AS is an auto-immune disease which involves the spine (primarily) and other joint in your body. Basically, as it is with all auto-immune diseases, it is a disease in which your body attacks itself in one fashion or another.

Ankylosing Spondylitis (ain-kul-oh-sing spon-dill-eye-tis), or AS is part of a family of rheumatic diseases called "spondyloarthropathies" and is genetic. It is very painful, debilitating and often leads to complete disability. AS is a chronic, painful, and progressive disease of the the spinal column. It is a systemic disease affecting not only the spine, but a patient's general health as well. In extreme cases, and thankfully this tends to be rare today, it can bend the spine completely through the process of fusing the vertebrae. This leads to marked stiffness of the spinal column making even simple tasks difficult to accomplish. You can basically end up looking like this poor soul below:

AS of the upper spine and neck

I was diagnosed with AS rather by accident. Back in 2002 when I was serving on staff full time as an Assistant Pastor, my ankles started swelling up and hurting like you wouldn't believe. I went to all kinds of doctors, including a rheumatologist, and a podiatrist - but no one could figure out what was wrong with me. For years before then, I had been complaining of lower back pain, and pain in my hands, and no one was able to help me then either, but one night the pain was so bad I had Chris take me to the emergency room. While I was there, they took a chest x-ray, and sent me home with pain killers and prednisone. Well the next day, the ER called me back in saying they needed to see me immediately - that there was something very wrong with my x-ray. Needless to say, I was scared to death. When I got there, they told me I had Pulmanary Sarcoidosis - an auto-immune disease that shows up in extreme joint pain, and the growing of these things called granulomas which are hard little nodules. These granulomas can show up in major organs - mine are in my lungs, robbing me of real estate to exchange air - mostly lungs, liver, kidneys, and rarely your brain. Needless to say, it's bad stuff. Well, the doctor that they sent me to for treatment started digging into my history of back problems, joint problems etc. and ran a test for a genetic marker called HLA-B27 - and it came back that I also had AS. A double whammy - AS/PS... oof.

AS can also affect your lungs, heart and eyes. But most often times it focusses on your spine and major joints. Right now, I'm in a place where I'm having to be very mindful of my posture. The more I can sit up straight, stand straight with my shoulders back etc. the slower the disease will force me to be bent over. My hips, shoulders, knees, elbows and ankles are involved as well but to a lesser extent. I will likely start looking like this guy before long:

A very common AS posture

Typical symptoms of AS include:

• Slow or gradual onset of back pain and stiffness over weeks or months, rather than hours or days.
• Early-morning stiffness and pain, wearing off or reducing during the day with exercise.
• Persistence for more than three months (as opposed to coming on in short attacks).
• Feeling better after exercise and feeling worse after rest.
• Weight loss, especially in the early stages.
• Fatigue.
• Feeling feverish and experiencing night sweats.

Right now, I walk with a cane because I find that if I don't have it, I don't have as good of balance because I'm not quite "centered." It's a pain. It's no fun. I have the potential to have surgery performed at a date and time when it gets so bad I can no longer stand up. I have to be careful as AS can also make you bones brittle and susceptible to breaking. A friend I keep in touch with on the web is completely bed ridden. He was riding in his father's pickup truck and his dad hit a pothole. The shock of it broke three vertibrae in his back. He lives in South Africa and doesn't have access to the kind of care I have here. I am blessed. But the surgery involves inserting screws and titanium rods in your back to force your spine to be straight. This is a before/after shot of a surgical patient with AS:

Surgical repair of AS

Another condition I am very susceptible to is iritis. Iritis is a serious inflammation of the colored part of your eye - the iris. It's normally just annoying, but it can eventually lead to permanent damage, and possilbly blindness. This is an image of a person with iritis:

Iritis - or inflammation of the colored part of your eye

Most people who know me know that I don't complain too much about my diseases. The combination of AS and PS is robbing me of my movement, and sapping me of my energy. It is no fun, and it hurts - period. I used to tell people I was "fine" and never let them know how I was really feeling, but now I'll usually say something to the effect that I'm not doing too well, or I'm feeling out of sorts... but I don't lie.

Fact of the matter is, I'm in pain 24/7. I know people who are much worse off than I am, so I usually don't play it up, or talk much about it. But there are days that I feel an almost desperation to escape this prison my body has become. There ARE days I feel sorry for myself. There are days that I wondery "WHY?" I get tired of explaining what's happening to me. I get tired of being looked at funny on the train. I get tired of having to explain to new employers why I'm slow getting around, or why I have to get up and move around, or why I am always taking pills. I'm sick of taking the small mountain of medications every single day. I'm tired of not being able to poop because of all of the narcotics. I am literally sick and tired of being sick and tired. AS/PS hurts. I hurt. There... I've done it. I've said how I feel sometimes.

Then, reality sets in. I have friends that are in so much pain every single day that in comparison, my pain looks like a mild headache. I realize that I am the way I am, and I can't change that... so I can live with it, or not. I am normally happy, and I don't tell people what's going on because, face it - no one really wants to know how you're really doing - do they? I see people who suffer from other things that make me look at my life in the context of their life, and I find myself praising God for all I have, all I can do, and all I am. There is a story of a healing in the bible that I just know is AS. In Luke 13:10-13 it tells the story of a woman who was "bent in two" for eighteen years... Jesus healed her. I know if that was God's will that he would heal me too... I've asked him, but so far, I still am blessed with AS/PS. I know that sometimes God chooses to heal our attitudes rather than our bodies. I know as I've written this that I sound bitter and as though I am complaining, but I'm not. Actually, I thank God for AS/PS. OF COURSE I'd rather not have it! But it has done some wonderful things for me. For one, I've slowed down and gotten to see life from the slow lane. In our busy day and age, we miss so much going on around us. Another thing it's done is giving me compassion and empathy for people who suffer. I know that sometimes just holding your hand means so much more than empty "christian platitudes" like, "just give it to God and believe for a healing..." again, not that it doesn't happen, but sometimes people just want to be loved and understood.

AS has changed my life. It has caused unbelievable stress in our lives, but it's also drawn Chris and I together. We don't take for granted the moments given to us. My kids have been wonderful to me, and have been SO helpful. And through it all, I've come to understand that while God choses what we go through, WE choose HOW we go through it. I can be the smell of death to those around me, or I can exude the sweet fragrance of love and acceptance to those in my life. I choose the later.

This is me... take it or leave it.