A.S. Face 0690: Jeremy Henderson

My name is Jeremy Henderson. I am 32 years old, and I am the face of ankylosing spondylitis. My journey “officially” began today October 29, 2012. This is the day I was finally diagnosed. Unofficially, I have been dealing with this disease for close to the last 10 years. That is just a guess though because after researching this for the last month there were signs long before that. Ten years ago I was in a pretty nasty car accident. I was ejected through the sunroof at about 55+ mph and landed square on my bottom. The whole accident to this day is still a blur, but this incident seems to be where my severe pain started. I actually thought I faired quite well. I was in the hospital for a week and faked my way through the physical so I could get back to work. My wife stayed at home with our newborn daughter, so I really couldn’t afford to take much more time off than that anyway. But honestly I didn’t feel that bad, just beat up. Within a month or so I was back playing softball and riding 4-wheelers, good as new. But then within the next year I started getting terrible (there really isn’t a word in the English dictionary I feel adequately describes it), terrible pain in my hips. I couldn’t tell you when it was going to happen. One minute I would be walking fine, then Bam, I would drop straight to the ground. It felt like bone grinding on bone and it would last anywhere from a couple hours to a couple days. I was taking over the counter medication like candy before my wife finally talked me into seeing our family doctor. She contributed it to my car accident, gave me a shot of prednisone, prescribed my some vicoden, and sent me on my way. And thus started my dependence on prescription pain killers. Not that I have ever abused them, thankfully they make that really difficult to do anyway. At that time I only needed pain meds when my hips would flare up, so I really didnt take them that often. As the days went on though I started having a really hard time sleeping. I work 12 hour shifts so going to sleep wasn’t an issue, but I’ll be damned if I couldn’t stay asleep for more than 3 hours at a time. I would wake up so stiff I would have to roll out of bed. I would get up, take a pill, stand in the shower till the water ran cold, and go back to bed. After a few years of this, and a few more doctors, I was referred to a pain management doctor. At the time this man seemed like my savior. He believed me. The problem I had was that I was a young free spirit with a lot of tattoos, which usually led people to believe that I was just trying to get a script. This has been the most frustrating part of my journey. When you know with every ounce of your being that something is wrong with you but no one believes you. I did not want pills. I just wanted to be normal again. I wanted to be able to sit and watch a movie with my kids and not be miserable. I wanted to wake up late for work and not have to have my wife put my socks on for me. I just wanted to be me again, but that goal seemed further and further from atainable. I gave up being honest about my pain level years ago because the solution was just stronger pain meds. I didnt’t wanna be a zombie. I just wanted to live my life. Finally a month ago, with a very angry call from my very awesome wife, I got a referral to a Rheumatologist (a very awesome Dr by the way). It took 2 visits, a blood test, and an x-ray to confirm that I have AS. This seemed to be a double edge sword for me so to speak. I always knew in the back of my mind there was no “fix” for me, but there was always hope. Now I at least have an explanation, and I have a list of dozens of doctors whos noses I would love to rub in it. I just started methotrexate this week. My Rheumy has 0 confidence it will help me, but I guess I have to go through the steps for my insurance to pay for the tnf blockers. I feel like I ended a long journy and am now embarking on a new, hopefully better, one. I have a fantastic supportive wife, so regardless  I know I will be fine.

Indiana United States of America

4 Responses to “A.S. Face 0690: Jeremy Henderson”

  1. Dear Jeremy,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. Hi Jeremy. Thank you for sharing your story with all of us. It’s so great that you now have a diagnosis & an incredibly supportive wife. That is so important. I hope you find this website to be a safe place, where you can share your story, & read other’s stories, & meet some amazing, kind & very supportive people. We all understand what you’ve been through, & what you will go through in the months ahead. Hopefully, you will find a great rheumatologist, who you can talk to, & who is willing to do everything necessary to get you on the appropriate combination of medications, if Methotrexate doesn’t help you alone. It is often given with Anti TNF medications. I was diagnosed over 11 years ago, but like you, looking back I know I had it for many years before my disgnosis, since I was ayoung child. If you have any questions, please don’t hesitate to ask. If I can’t answer your question, I’m sure someone on here can. Good advice, even if you have to see a few rheumatologists, make sure they are someone you trust, & have a good feeling about, & someone you can talk to, since they will be a part of your life, & making very important decisions. There is an Information Board on this website, if you scroll down past the names, it should be 9 or 10 lines past the names, click on the Information Board & it does have a state by state listing of rheumatologists & other doctors in your state or area. There is also a lot of other resources on there, too. Welcome to the Faces of A.S. Family, Jeremy. There are many people that are here to support you, if you need. A.S. affects all of us a little differently, & it’s the same way with the medications. Pain & fatigue are major issues we all deal with, & stress & other things like weather also affect your pain levels. I hope you meet many great people here, & find comfort knowing you are not alone, & your wife may have some questions & want to get involved & meet some people here, too. Wishing you the best of luck, Jeremy. I’m Lisa, it’s very nice to meet you. I’m really happy you found this website, it’s helped me & so many of us find a place where everyone understands & can relate to what we’re going through, & can ask questions, meet others, & feel comfortable, without any judgments.
    Sincerely, Lisa

  3. I am terribly sorry that have dealt with this pain and suffering for so long, but I am glad to hear that you have finally found a competent doctor. I was just diagnosed a year ago, after suffering for 14 years with various symptoms. Mine started after having mono at the age of 15. As you said, it really is a double-edged sword. On the one hand, it was a relief to finally have a name to put to all of these symptoms I have dealt with…to finally have a doctor validate how I was feeling. On the other hand, it is scary to think about the future. Unfortunately things have declined significantly over the past year, but I remain hopeful that one day I will get to a better place. I pray that you are able to endure the process of trial and error and find treatment that works, relatively quickly.

    Kim (# 108)

  4. Just curious if I could get the name and location of that doctor. I also live in Indiana, and my doc sucks. He said i have degen arthritis, but doesnt want to test for the a.s. gene.

    Thanks Justin

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