My Spondylitis Life - Intro & Part 1
PSA : If you already read parts 0 and 1 online, feel free to skip this one. In the future I'll send the email the same time that I post them online (Life got away from me and I forgot I'd got the newsletter set up as well)
What is this?
Not many people have heard of ankylosing spondylitis. Fewer still know what it is like to live with.
So I'm going to write about what it is, not medically, but what it is to me. What role it plays in my life; how it impacts me daily and in the big picture. How it makes my life worse, and yes, how it makes my life better.
I'm not quite sure what structure this will take. I have a lot of words inside my head and only a fraction I've ever told my journal or my lovely and supportive wife. But it's a journey we can go on together.
I have 5 posts, one for each Thursday in June. I'll try to keep them all short and relatively easy reading. If there's still more to say, maybe I'll keep going.
Others have written similar things, almost certainly better than I can. But if me writing this can help just one person, it's worth the redundancy.
Why am I writing it?
Recently, my mom told me that she had read 2 different books about spondylitis and how to manage it. She did this because she wanted to better understand what it was like and to understand how she could best support me. First, yes, she's an awesome mom.
But I was also struck by how hard conversations like this are to have with people, even those we care about. In addition to my own spondylitis journey, I have had many friends with a variety of health issues. I've written before about how I am concerned that being polite can reduce our compassion for each other. I'm always torn between wanting to ask questions and being respectful of their own private matters. I suspect others feel similarly.
So I want to open up and be vulnerable. Sure, hopefully some people who read this are friends who will be supportive of me. But mainly I want to help set the precedent that we can talk about these things. That we can all make each others' lives just a little bit easier.
What is Ankylosing Spondylitis anyways?
This will be quick, and roughly correct. I am no doctor, and I'm more concerned with explaining how it feels than with parroting a medical textbook (or wikipedia). Please skip this if you're already acquainted, as you probably know more than me. 😂
"Ankylosing spondylitis" translates roughly to "fusing inflammed spine", which is an accurate enough summarization, though it glosses over some of the details.
It is chronic condition in which the immune system begins attacking the body. The inflammation actually affects the whole body, although it is focused on the hips and spine. Other joints are frequently impacted, as are the eyes and the gut. Any region affected by the inflammation will be painful, to the point of limiting movement and preventing sleep. Over the long term, the chronic inflammation begins to cause fatigue, brain fog, and a host of other symptoms.
If left untreated long enough, the soft tissues of the spine begin to calcify and fuse. Generally starting from the hips (sacroiliac joint) and working up. The endgame is called "bamboo spine" and is a fully fused (and curved forward) spine, utterly lacking in mobility.
And So We Begin
I'll be honest. I was scared to start this project. I still am.
I asked my wife. She told me it was a good idea.
Some of my most trusted friends were also interested.
So here I am, doing the thing.
But it wouldn't be happening without you, my friends. And it wouldn't be as meaningful without anyone reading. So please, ask me any questions you may have. I'll answer them all. If I get enough questions, maybe I'll do a Q&A post at the end.
Feel free to ask in the real world if you know me. Otherwise get in touch here: hey@logangee.net.
Also let me know if you have your own story you want to tell (privately or publicly). I love to hear others' journeys and know that we're there for each other.
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, 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, 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.
The more I read and learned, the more I recognized from my life. 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.