My Spondylitis Life Part 1: The History
The Prologue
The pain started in college. I think. It’s hard to remember exactly, but I remember things changing freshman year. My knees and hips started to hurt, and I didn’t understand why. I’d always been very active, but one day in gym class 1, we were running the mile and I just couldn’t move the same. Later on, when I was limping down the hall, a guy in my dorm said “O c’mon Logan, you’re not hurt! Just lazy!” Honestly, that comment still stings.
Other things started changing. I kept sleeping on my back, but started sleeping through the night with my knees raised (which gently curved my back & hips). I lost weight. About 20 pounds.
By the end of college, I was in near constant pain, and my thin frame could be seen trudging through campus 15 minutes before class to be sure I would get there on time. A restless sleep came rarely and erratically. I’d fall asleep any time between 9:00 PM and 2:00 AM, waking between 4:00 AM and 9:00 AM. With my mobility failing, it was around this time some of my friends starting calling me an old man. I tried to take it good spirits.
My mom was understandably worried, and so I went to many doctors for everything from sports injuries to nervous system disorders. To summarize: “You’re too young for back/hip/knee pain, get over it” or “We don’t see any damage on our imaging so it must be in your head”.
I got the message that it was something wrong with me as a person and my own problem to figure out.
Act I: The Dark Times
I graduated and got a dream job at Lockheed Martin. I moved in with my wonderful girlfriend, and everything was looking up.
Except, the pain didn’t leave. And all the friends I was closest with moved across the country. Oh, and the dream job ended up being… well, not a dream.
I was spending 9 to 11 hours each day in a chair twice my age hunched in front of my work computer, in a windowless room with layers of dust an archeologist could write a dissertation on. Then, to relax, I’d go home and slouch on my couch to play video games with my friends. Add on the some other stressors and poor eating habits, and everything got much worse.
Obviously the pain intensified, but I was well past the point where I did anything but grit my teeth and ignore it. My mobility kept slipping as well. Then the nightmares and sleep paralysis started.
I was in free fall. Every aspect of my life was worsening the disease that I didn’t know I had. And all the symptoms prevented me from doing anything meaningful to change it. I was even convinced it was my fault.
The only bright light was my girlfriend.
Act Ii: The Battle
On our 24th birthday 2, I gave her a ring and she said “Yes”. Deeply depressed and ashamed of my physical state, I wanted to make changes before the wedding.
First came a new job, along with an oath to myself to never work more than 40 hours in a week. This stopped the nightmares and improved my mood somewhat.
Then I tackled my greatest demon. With my mom’s support and my fiancee’s encouragement I started seeing a trainer 3 times a week. I started stretching every day. I thought I had destroyed my body and wanted to try to fix it.
Marc started me with mobility exercises. These innocent looking movements were effortless for him, and pure torture for me. Then I would go home and do stretches for my hips and back. Except, my mobility was so poor and my body so weak, that I couldn’t do anything effective on my own. So Kayla had to help me. In one exercise, I would stand with my heels and butt against the wall, and try to stand up straight. At best, my head was still 9 inches from the wall. She would gently push my shoulders upright while I tried not to cry. I never succeeded.
Day after day. Week after week. I fought, through more pain than I care to recollect. By our wedding, I had stopped getting worse. Some of the pain had dulled. I’d started gaining muscle again.
I wasn’t happy, but I was grateful that it wasn’t worsening anymore. The flight for our honeymoon was still torturous.
I kept fighting for 4.5 more years. Day by day. Movement by movement. Mobility, weights, running, stretching, everything I could think of. I slowly got better. Too slowly.
And then, two weeks before our first child’s due date, I was struck down. One day, my right eye was slightly pinkish and mildly painful. The next, I couldn’t leave a pitch black room without excruciating pain. I was confined to our bedroom for two weeks. I couldn’t work, I couldn’t work out, I couldn’t see friends. I couldn’t be there if my unbelievably pregnant wife needed me…
The doctors got me sorted out with some very high strength eye steroids. I was able to see my daughter when she was born. And my wife redoubled her search for answers.
She found something. A strange autoimmune disease that matched most of my symptoms. And I hopelessly dismissed it just as quickly as doctors dismissed me all those years ago.
Because I’m a dummy.
Act Iii: The Answers
Nearly five years after our wedding, we were back at the same venue for one of our best friends’ weddings. Jason had been a part of our wedding ceremony, and we were honored to spend so much time with him and his family at his wedding. And it turns out his oldest brother is a rheumatologist. Who spent his fellowship studying the strange autoimmune disease Kayla had found.
At the post-wedding brunch, she asked him some questions while we both held our infants and he generously gave us a bunch advice and a business card. A month later, I was sitting in office, getting blood draws, x-rays, an official diagnosis, and some treatment options.
Ankylosing Spondylitis.
The thing I’d been unknowingly fighting all these years. It had a name. Other people were dealing with it. There were ways to live a “normal” life. 3
The more I read and learned, the more I recognized from my life. 4 And, the more I saw a way forward.
And so, I got back to work and began again.
Next time, I’ll talk about what symptoms I live with these days.