The Superbowl Sunday That Changed Everything
Like so many others I’ve met, being diagnosed with ankylosing spondylitis was no quick or easy journey for me. I think I started experiencing symptoms when I was in college; I sought the help of athletic trainers, physical therapists, and a whole variety of doctors, but no one could tell me what was wrong. I had surgery on my left hip when I was 21 for a psoas impingement and partially torn labrum--but I’m fairly confident now that my AS was the real root of the problem.
I was still in pain
After recovering from surgery and spending a full year in physical therapy and working with athletic trainers, I was still in pain. At that point I just remember thinking that I didn’t want to go through the surgery and recovery process again, so I just ignored it.
I spent the following years with unpredictable pain. My hips ached and stiffened, and eventually my lower back started to hurt. I knew the pain was the same as what I had felt before surgery, and assuming they had gotten the diagnosis wrong I continued avoiding doctors, certain they’d string me along or misdiagnose me again. Eventually I asked my primary care about the intense lower back pain that I was waking up with every morning, and she told me it was “out of her pay grade” and that maybe I should try stretching more or take ibuprofen.
That was the icing on the cake. I had decided to ignore my fears and ask for help and was dismissed and feeling furious. Yet again I spent a year just dealing with pain and refusing to seek medical attention.
Then it all changed
Superbowl weekend of February 2017 was when everything changed for me. We were planning a big party with friends and family at our house to watch the big game. An avid New England Patriots fan, Superbowl Sunday is on par with Christmas for me.
The Thursday before the game my hips started to bother me while I was at work. The pain was nothing new, and I was confident that if I rested and took some ibuprofen it would pass. Friday, I felt worse. I remember having to leave a meeting at work because sitting in the conference room chairs was too painful. I again took some ibuprofen and hoped I would start to feel better soon. After leaving work for the weekend the pain only continued to get worse. I went home and didn’t move from the couch all night. I laid on my heat pad and took pain relievers, but it didn’t seem to be helping. I remember struggling to walk up the half-flight of stairs to get to bed.
I was in agony
Saturday I was in agony. I was experiencing what I now recognize to have been THE WORST flare I would ever have (at least to date). I only moved from bed, to couch, to bathroom, and back to couch. My husband (boyfriend at the time) had to help me just to stand in the shower. I cried trying to walk on my own. No amount of ice, heat, or medication could touch the pain.
I went to bed that night thinking “how can I have people over tomorrow when I can’t even stand up to take a shower?” It probably seems like a ridiculous worry when I was in such extreme pain, but to this New Englander, a Patriots Superbowl is a high priority.
I couldn't stop crying
I spent most of Saturday night uncontrollably crying in my bed. There was literally no way I could comfortably lay and not be hurting. I think I cried mostly from pain, but also partly from the frustration of not knowing why this was happening, or why I couldn’t do anything to make it better. My husband laid awake with me pleading with me to let him take me to the hospital, promising they would be able to do something to help. But I was still too jaded by my previous experiences, and I refused to go.
I must have eventually cried myself to sleep. I remember waking up the next morning and my husband texting and calling all of our friends to apologize and say we’d have to cancel the party. There was no way I could entertain guests--I wasn’t physically or emotionally well, and he recognized it. Of course, he didn’t tell them any of this, but watching his panic and fear because of what I was feeling, and how much pain I was in, made me realize I needed to do something.
I called my doctor again
I promised him that I would call my doctor the next day, and that I would give an honest effort to getting some answers. I needed to toss aside the skepticism I had towards medical professionals and figure out what was going on with me. I started by calling my orthopedic surgeon from a few years prior, and making an appointment as soon as he could see me. I was skeptical, but I knew another round of “try to figure out why Erin is in so much pain” had to be better than what I had experienced the night before Superbowl Sunday.
From that point, it took 3 months of appointments with different doctors, and continued AS symptoms to finally figure out what was wrong. Had it not been for that awful night and that canceled Superbowl party who knows how much longer I would have stubbornly resisted seeking help. By the time I was diagnosed, I had partial fusion of my SI joints and my doctor suspects it was fairly rapidly progressing. It seems silly, but for me, it was Superbowl Sunday that changed everything.
Do you use the word disability to describe your AS?