My Story… Life with Ankylosing Spondylitis
In January 2018 at the age of 37, my life was flipped upside down when I was officially diagnosed with Ankylosing Spondylitis.
That’s where this story begins: shortly after I was diagnosed with a lifelong disease for which there is no cure. I remember getting the call from my wife, whose office was next door to my doctor. She told me he got results back from my blood work and it confirmed what he was worried about. My wife called me in tears and told me the news. I listened but had no idea what to ask or how to respond. After hanging up the phone, I went into my garage gym, sat on a workout bench, and began to cry uncontrollably until I fell asleep in exhaustion. I was emotionally broken.
Late September, 2017. Walk-in clinic after 6 weeks of illness. I’d lost a significant amount of weight
Four months prior to this, I had suddenly gotten ill. For six weeks I was unable to hold down food and my weight got scary low. We never discovered the reason for this, but a month later I had my first AS episode. I had pain all throughout my hips and low back all the way up to my neck. I couldn’t move without shooting pain and muscle spasms. Somehow, staying still made things worse. I was unable to sleep more than a couple of hours a night due to the pain and discomfort.
Christmas Day 2017, watching my son play out of the window while in pain
I remember sitting at my in-laws house over Christmas looking out the window while my 5 year old son Keller was learning how to cross-country ski with his mommy and grandparents. Thoughts flashed through my mind of Keller living his life without his Daddy there to see him accomplish things because I was sitting on a couch in pain. After two months of more pain than I’d ever felt, I was convinced this would be how things were for me moving forward.
The confusing part is that just before this all came on, I was in the best shape of my life and had almost completed my training (long run was 17 miles) for my first marathon. I’d worked so hard towards completing a life goal of running 26.2 miles at the Leavenworth Marathon and all that work was down the drain. I’d recently fallen in love with running and found it to be the one place where I would come alive. I would put my running clothes on, place my ear buds in, and enter a whole new world. I would listen to worship music, pray, work out mental struggles, listen to a book, or just focus on pushing myself to new limits. I just felt centered. After hearing my diagnosis, I felt like all those running goals and experiences I had were down the drain with one phone call. As a matter of fact, I felt that all of my life and family goals were down the drain too.
What is Ankylosing Spondylitis?
Ankylosing Spondylitis (AS) is an inflammatory arthritic disease that, over time, can cause some of the small bones in your spine (vertebrae) to fuse. AS usually starts before the age of 45 and the initial episode can last up to three months. Movement seems to help with symptoms and pain, while rest seems to make it worse.
Fused Vertebrae (Also known as Bamboo Spine)
Exact symptoms may vary from one person with AS to the next. I tend to experience intense achiness and pain late at night and into the morning. Once I get moving and my muscles and joints warm up, it calms down to a mild discomfort and pain throughout the day. Most of my symptoms as of now are located in my hips with my left hip being the worst.
To help readers understand what this is like, imagine the achiness and pain you feel days after your first workout following a period of non-exercise. Your muscles are swollen and soar, it’s hard to move around without it hurting more, and so you rest and allow your muscles to recover before going back at it. This is what I experience every morning regardless of how good or bad of shape I’m in. Now imagine that if I rest, it makes it worse. My only course is to keep moving because for me movement is medicine. And finally, just to complete this picture, I have a disease in which my body over-creates inflammation. Too much movement is problematic. Running long distances will cause inflammation, something my body doesn’t need more of and struggles to fight. But I love running long distances. This is my experience with AS every single day. I am in a dance with pain and I intend to keep leading the dance.
Running After AS
After receiving my diagnosis, I began doing research on AS. I learned all I could about it and discovered there is community and support out there. I started asking a question that would later come back to inspire me: “What are the limits for someone with AS?” I could not find much on this topic so I set out to figure it out myself.
Improving core strength June 2018
Within a couple of weeks of being diagnosed, I started running again. It was a real struggle! It’s like watching a toddler learn to walk. My body responded with pain after most runs and the feedback I was giving myself was “maybe it’s time to give up on long distance running. Maybe it’s time to accept that you are a 15-20 mile per week guy and move on.” I gave up on the dream of completing a marathon and decided races were no longer a part of my life. I focused on a steady 4 day per week schedule with my longest run at 5 miles and began spending time in the gym working on strengthening my back and hips. But there was a part of me that yearned for longer distances. I secretly wanted to know the answer to my question of “what are the limits for someone with AS?”
Why 100 Miles?
The first two years of life with AS were difficult for both my wife and me. It’s not easy living with pain and discomfort and my sweet wife watched me suffer through it. Thankfully we had the support of an amazing community both at our church (Sage Hills Church) and in our town (Wenatchee). At the end of 2019 we took on a new challenge and moved to Colorado. For 18 years I had put off a goal of lead pastoring a church and it was time to stop putting this off and go for it. We arrived at Christmas time to a little church who’d been declining in attendance for almost a decade after years of growth. We were asked to try and turn things around and lead this church back into purpose. Of course, just three months later in March of 2020 the whole world got flipped upside down with the onset of the Covid-19 pandemic.
Over the next 10 months my staff and I did our best to lead during one of the hardest times our world, country, and the church had ever faced. Things did not turn out as I had hoped. In October, after just 10 months of leading, I found myself isolated and feeling alone. Pastoring during this kind of time was very isolating and lonely, and we knew no-one in our neighborhood and most people were worried about welcoming us because the pandemic was so new. Our son switched between in-home learning and in-school learning without knowing any kids. These big changes caused Keller to have panic attacks almost nightly and intense anxiety throughout the day. Both my wife and I were also struggling with anxiety. On top of all of that, I felt like an absolute failure to the church, my family, and myself. My AS pain was high and I was struggling with feeling tremendous guilt for the high price my family had paid for me to pursue this pastoral position.
It was during all of this that I found myself running on my treadmill one snowy cold day. I watched a documentary called ‘The Standard’. One line stood out to me above all: “Not quitting is not winning; winning is winning”. A realization hit me like a punch to the tooth. I wasn’t winning anymore. I was just not quitting. I’d let it all get to me. I stopped fighting for my goals and dreams and started letting physical and emotional pain dictate what I did and did not do. Worse, I knew a lot of people were doing the same thing. They may not have AS, but they are living their lives like they do, getting up in the morning feeling stiff and hurting emotionally, physically, relationally, etc. I wanted to win: for me and for them. I wanted to inspire. I wanted to see my son Come Alive from anxiety and panic attacks. I wanted to see my wife smile and Come Alive again. I wanted to see my friends and family stop ‘not quitting’ and start Winning!
But what does winning mean? Well, one area for me was running. It’s not just about running. It’s about not quitting on myself. So, what ARE my running goals?
That question reminded me of the question I’d asked two years ago: “what are the limits for someone with AS?” Should I aim for a marathon again? It is a life goal after all. But a marathon didn’t seem to fit. It just seemed too possible. I’d found several others with AS who had accomplished this. I wanted to do the impossible. I wanted to do something I should not be able to do with AS. I decided to stop researching what the limit was with AS for others and go find out what it was for me.
I was inspired by a man named Helgi Olafson who has been ultra-running for a number of years and has lived with AS since he was 18 years old. Helgi has pushed the boundaries of possibility for those with AS and inspired many people over his decades of experience in the racing world. Helgi has run incredible races with distances of over 200 miles. He is the answer to what is possible with AS. So my question became “what is the impossible for me?” A 100 mile ultra seemed like a good place to start.
Running 100 miles seemed to be the perfect goal for me but I wasn’t sure what my rheumatologist (Dr. Rose) would think. When I asked Dr. Rose what I could do to prepare myself for this goal, she said “you shouldn’t. It’s crazy!” We both laughed and then she asked me why I wanted to do this. My response finally flowed out as clear as day “I want to inspire others to overcome their own struggles and do what seems impossible”. There it was. My goal and my reason.
With this, and yes, the doctors blessing, I began my journey towards running a 100 mile ultra. I wish I could say it’s all gone smoothly, but it has not.
The Pain of Starting Over
I gained a lot of experience running in 2021. I ran more overall miles than I’d ever ran before and achieved a new long milage of 20 miles. I learned that Ultra Running is a team sport so I built a great team around me, starting with my running coach Brittany Charboneau, aka the Funny Runner. She is a professional Marathoner and among the many amazing things she has done, she won the Pikes Peak Marathon. She is legit! (You should check her out! She has a documentary called ‘The Funny Runner’ https://youtu.be/j5P8iYUEnBw )
I also started receiving regular physical therapy and chiropractic treatment at ‘Denver Sports Medicine’ owned by Dr. Vance and Dr. Alysha Shuring. They are an amazing team and have helped me work through my aches and pains! And I’ve had some amazing people in the Ultra Running Community who have guided me as well. One I want to point out is Rob Steger, aka Training For Ultra. He has a podcast and book under the same name that are well worth the time.
But I also experienced some serious set-backs. In April I began a new medication that completely changed the game for me. This medication allowed me to experience what living and running was like without the constant pain. I had a brand new lease on life. It was great, until it wasn’t. This medication is a TNF inhibitor immunosuppressive medication, meaning it suppresses my immune system, keeping it from working on overdrive to produce inflammation. It worked great for my AS, but it also shuts my immune system down.
E.R. visit March 20, 2021. Almost lost my arm!
On May 20th, one week from running my first marathon, I got bursitis in my left elbow that then got infected. I had planned to go ahead and run the marathon anyway and expected with ice that it would just get better. Thankfully I am married to a brilliant and rational woman who convinced me to take this seriously. She reminded me that my medication prevents my body from being able to fight the infection off. She convinced me to go to the E.R. While there, two doctors explained to me when I kept asking them how their treatment ideas were going to impact my race that they were not concerned with my race. One doctor put his hand on my shoulder and said “son, we are trying to save your arm, and maybe even your life.” I looked him in the eyes and said “so, like what, one week without running then?”
The elbow infection cost me about two and a half weeks of running and my marathon. But I had shifted my eyes onto a 50 mile ultra that was 2 months ahead. I worked with my running coach to rebuild and start training for this race. Then it happened again. Another injury. I severely strained my psoas to the point that I could not move without extreme pain in my groin and abdomen (No guy wants pain there. Seriously scary!). This new injury cost me the racing season. I was out for several months.
Come November, I knew I needed to get moving again. Resting my psoas allowed it to heal but also made my AS hurt more (remember, movement is medicine for me). To top it off, my medication was no longer helping me, and I was starting over with new meds as we tried to find one that would work. Every run hurt, bad. I was struggling to sleep due to discomfort. Milage that normally would have been an easy for me was back to being a complete struggle. My hips hurt worse than they ever had before, and I found myself on multiple runs crying in frustration and pain.
Eli (aka SuperMan!)
With all of this, my motivation was really low. If I’m honest, I was just ticked off that my body was always fighting me. I couldn’t get myself to run consistently, despite having a base training plan from my coach to follow. I’d forgotten what my why was.
Then on November 5th I got a text that changed it all for me. A friend referred a family to me whose 12 year old son Eli was just diagnosed with AS. This family attended the same church we had in Washington and knew of me. Little Eli was hurting and struggling to understand why he was going through this, something I felt when I was diagnosed too. I snapped out of my ‘poor me’ syndrome and reached out to this family. I’ve been trading texts with them and sending Eli videos while on my runs. I had my ‘why’ back.
I am doing this for kids like Eli. I’m doing this so Eli will know you can overcome this. I’m doing this for people who have a ‘this’ that makes you want to give up. ‘This’ does not have to hold you back from doing impossible things. It’s only impossible until you do it.
Let’s Talk!
This blog post is far longer than any other I will write in this journey. You are now caught up in my story. In January I will officially start my training for the Stagecoach 100 in Arizona in September. I’ll be posting along the way to tell that story.
I’d love to hear from you! What is your ‘this’ that you are trying to overcome? What is ‘winning’ for you? Tell me your story!