When I first stumbled onto this site a few weeks ago and read some of the posts, I thought to myself “these people sound just like me!!” I’ve always wanted to find some kind of “support group” of other AS sufferers to compare notes on “how to cope.” In the ten years since I’ve been diagnosed-I’ve met only one other AS’er (is that even a word!). It’s a lonely disease, in that non AS’ers can’t even pronounce the name much less understand it. Don’t you hate it when you tell someone you have an arthritis of the spine and they say “ya, I know what you mean, my thumb get’s really sore when it gets cold”. Are you kidding me! Don’t ya hate it when all the friends you grew up can still ski, bike, hike and do all the things you used too. Come to think of it-I still have my old ski’s and a mountain bike with flat tires in my shed!
In the past, when I’d read the stories of AS sufferers on other “chat lines,” I had to quickly stop because I could feel the darkness descend over me. But this site is different. I’m struck by the optimism and the whole “I’m not going to let this ruin my life” attitude. This is definitely a work in progress for me, but I think the spiritual journey for us AS’ers is too somehow overcome the darkness and find the light. If you can’t change something, then change the way you think about it. If the meek are to inherit the earth, then I can’t thing of a bunch of people who deserve it more.
I’m going to tell you “how I cope” first, because you’ll probably loose interest half way through my story below. When I think of AS I think “paint it black” and “no matter how hard you try, you can’t make pain your friend.” The image of me sitting on my couch the day I “stared into the abyss” and realized this was going to be forever (10 years ago)is very clear in my mind. At the same time, something inside me, maybe some survival instinct, made we want to “turn a negative into a positive.” The first year I was diagnosed is also the first year I started “writing” about and getting active in a “cause.” It makes me feel a lot less like AS has “ruined my life” and a lot more like AS “has shaped my life.” Awhile back, after finding a little success with my endeavor, I found myself actually “thanking God for crippling me.” How crazy is that! All I can say is “get revenge on AS by turning a negative into a positive!” I hope that many of you young people who have just stared into that abyss, can say in ten years “it wouldn’t have happened without AS.” I’m not going to preach at you guys, but when you lie in bed on those dark nights when the abyss likes to appear, if you ask God to come into your life, open your heart, you will feel his warm love. God won’t cure us, but he can help us to heal.
Well, here’s my story. If you’re like me, it’s a well rehearsed one. It all started 26 years ago, when I was 26 years old. I was a logger then (in retrospect, not the best career choice for an AS’er) until a “mysterious”pain in my back ended that. A pain that I could find no cause for- a pattern that would repeat itself many times to come. Well, I went to school to become a land surveyor (in retrospect-not the best career choice for an AS’er). But the back pain subsided and things were OK. 18 years ago my neck “froze” up-for no apparent reason. My first trip to the Physical Therapist. After a year, that pain subsided and left me with a “grinding” noise ever since. Then one morning I got up and it felt like someone stabbed me in the back with a knife-where the ribs are. Didn’t know what caused that. After about a year that pain slowly receded. That was followed by right foot pain in my arch which settled down after a couple years. I finally gave away the last pair of shoes I bought but couldn’t wear (I had four of them in my closet). A plastic arch support finally relieved that one. Let’s see, my right wrist gave me problems for awhile, and one day I bent my foot back and the little tendon on top of the “big toe” felt like it ripped in two. That brought tears to my eyes-but what the hell caused that! How can you injure the tendon on your big toe!
Then 10 years ago the big blowup came. Still don’t know what caused it(nothing). The spine erupted from the SI to C-1. I couldn’t sleep on my side for hip pain. Neuropathy down the to the feet (pins and needles).That was the first script for codeine. After a couple years, it had settled down somewhat, but it never heals does it. I was getting epidural injections in the SI, when my eye went “milky”-like looking through a milk jug. Went to an ophthalmologist and he said, “ you got Iritis, it’s caused by a disease called ankylosing spondylitis, do you got any low back pain??” I said, “that’s a big word, you better write that one down doc.” So off to my reumatologist.
Let’s see. The NSAIDS destroyed my stomach. Sulfazine destroyed my stomach. Woke up with a sore throat that wouldn’t go away and nausea four hours after I ate. Esophagus erosion from acid reflux with no heart burn. Aren’t pills supposed to make you better? The Iritis popped up four or five times before the dosage got big enough to “get a lid on it”(reumy quote) and keep it “from breaking through.” (It’s amazing how you get to see the eye doctor that afternoon when you call and tell the nurse your iritis has flared). We moved to self injecting Methotrexate and that calmed down the back enough so I didn’t jump when they “poked” along the spine. Five years ago we went to Enbrel. My Reumy calls me a “poster child for Enbrel”. I’ve got anterior squaring of the vertebra, but no fusing! He said 30 years ago, when he started, it wasn’t a question of if but when you fused. He also said that if we’d let it fuse it wouldn’t hurt anymore! What?? Of course, we’d have other problems.
Today, I can tell myself that things are better than ten years ago. The spine has settled down. I still survey because of some damn fine young guys who do the “heavy lifting.” I usually get to walk just about enough to stay mobile, but any more than a half mile and the SI get’s pretty damn “raspy.” I asked the Ruemy (who now calls me old friend) “if this Enbrel is so good, how come I still hurt, and he said the “joint damage is already done.” I asked him “if this Enbrel is so strong, how come my “ribs” has started “stabbing” me again and my neck is always sore”. He said AS is a strong disease. Enbrel is a pretty good lid, but you get the sense that the AS is bubbling right below the surface.
Thanks, Derek Weidensee
Rapid City, South Dakota United States of America