A.S. Face 0221: Derek Weidensee

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

11 Responses to “A.S. Face 0221: Derek Weidensee”

  1. I really enjoyed reading your story! Hang in there and keep fighting the good fight 🙂

  2. Dear Derek,
    Thank you for sharing your story with us. I can so relate to it. I too battled with the darkness of this disease and the havoc it played on my life. I wanted so much to make all of what I had gone through not be in vain, to make something positive out of my life with Ankyslosing Spondylitis. I have been blessed to be able to do that with every part of my life, but this was harder and more rewarding in the end. Thank you again, for sharing your amazing attitude with us.
    Sincerely Cookie

  3. Thank you my “new friend”.

    Jacquie (An “AS’er” too)

  4. Derek,
    Thanks for your story. I understand your explanation of “darkness” you ran into elsewhere. I have been trying to read, study and learn as much as I can. The other sites do have some good information and I am sure most mean well, however it can get overwhelming and I have to step away as well.
    I am trying to keep positive, some days that is easier than others, and this site is one that can certainly help with the attitude. The stories, like yours, are encouraging.
    DanB (0184)

  5. Hi Derek! 🙂 Thank you for sharing your story. So many parts of it “hit home” with me. I love your attitude.
    Marti (face 0199)

  6. Dear Derek, thank you for sharing these insights with me. As your sister, I’ve traveled this road with you through listening but had no idea you were hurting so. I have seen a wonderful change in you over the last few years.youve gone from being an angry (crabby) brother to a wonderful and fun brother to be around. You truly did begin to enjoy life “in spite of”. I love spending time with you as does all of your nieces and nephews. Your life is rich and full and your focus is now on positive things rather than the negative. It takes a great deal of courage and determination for anyone to change their life or better yet, their attitude of life. I suspect that your blog will change many other lives as well. You should be proud! Your family certainly is!!!! Love, your sister Julie

  7. Thanks guys! And thank you big Sis-you have always listened-and as you can see from this website, us As’ers have a need to talk in order to try and understand.

    Marti-stay strong. I can be all optimistic here, but I know the pain can control the mood. I should say it can “warp” the mood-in an insidious way. Anger, frustration, thrashing out, why me…Like I said, it’s a work in progress for me, but I’d like to figure a way out of those moods. For example: I’m in engineering, so I’m a perfectionist, things get expensive if things aren’t 99%. But with AS, perfectionist is a curse-I got to stop getting frustrated when things aren’t 99%. I spend too much time focusing on what I don’t, won’t, or can’t ever have.

    DAn B– I believe in Enbrel. BUT, I’ve had a few doctors tell me with their wonderfull bluntness that ” we can’t make you be 21 again”, or “you’ll have to live with it”, or “the damage is done” or “all we can do is try and control it.” These guys are happy to stop the progression. Doctors can’t help us with “how we handle it”. I guess what I’m being a downer about is: you may have to accept that the things you used to love to do might now hurt you. I hope you can still continue, but try not and get frustrated (see above). And DON’T FOCUS on the damn pain. WE tend to focus in a vain attempt to understand. Another doctor quote is ” focusing makes pain worse”. WE can’t “will it away”. It’s like the “banging air ducts” in my house. I don’t notice them unless I listen for them.

    Now, enough of the “let’s face reality” crap. I want to thank Cookie. I hope this blog grows and gives us all an opportunity to talk, compare notes, get info, and maybe together, we all can figure a way out. I don’t mean the physical, I mean the mental. A good friend of mine has had Ruematoid Arthritis for 30 years since he graduated high school-nasty carbunkles. I asked him years back “how do you deal with this stuff man”. I expected him to say some deep philosophy, instead he waved his hand and said, “man, it’s an old act now”. It may be as simple as “accepting and getting used to it”. We’re always left with a way out.

    If any of you would like to “vent”, you can email me at “survey@rushmore.com” (I promise I’m not selling Amway!!)

    PS-Time to go and do my “physical therapy”(my PT calls me “old friend” too-I’ve watched his kids grow up). A doctor once asked me “what makes it worse” and I snappily replied “Physical therapy”-then I got the shot. But- theres that “sweet spot” of mobility.

    PS-Bless you Cookie

  8. Derek, wow, every time I read someone’s post. You discuss having neuropathy and I had that left leg numbness for 5 weeks 14 years ago. I am still putting the pieces together. Not excited about Meds as I have such sensitivities to them often enough. Thank you for your encouragement along the way…..

  9. Derek, thank you for your post on #824. So many similarities. I had the leg pain also, cramping that felt like a railroad tie was shoved in. Getting my eyes checked next. Thanks for your faith and optimism.

  10. Derek: Checking in to see how you are doing. You were one of the first people to welcome me, and I thought I would see how you are doing at the moment. I wish you all the best for a happy holiday season! Stephania #445

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