Hello, my name is Kristen and I’m 31. I’ve debated for a long time about a sharing my story because I wondered how I was going to tell it? Who would relate? Would anyone benefit from hearing my story? I found the Spondylitis Association of America on Facebook and became inspired to share my story after reading so many others’.
I come from a family of healthcare providers, mostly nurses and chiropractors. So when I developed back pain and sciatica pain in high school (circa 2004), it was natural to seek their advice. I was in the prime of my physical fitness and was playing softball all year round so it was frustrating to have this pain, and it always seemed to worsen when I tried to be more physically active. After visits to my family for adjustments, nothing was working consistently. I sought the advice of a few PCPs down the road and all came up with the same conclusion: I was overweight and out of shape. Nothing is more frustrating than hearing that, especially when it didn’t make any sense.
Fast forward to some 5-6 years later. I developed worsening pain in my back and hips. Worse at night, stiff as a board in the mornings. Thrashing all night to sleep because the pain was so bad. Exhaustion. An hour in the mornings to “loosen up” after a rough night of sleep. Horrible foot pain. I felt like I was 95 years old amongst my 20-something year old friends. More doctors, more “overweight” diagnoses. More frustration. I dealt with the symptoms through college, then through nursing school and most times, was just too busy with studying to really focus too much on how bad the pain and symptoms were.
When I began graduate school to become a nurse practitioner in 2013, I was diagnosed with ulcerative colitis. I had come to think my entire body was fighting against me. As I struggled with this, I couldn’t help but wonder if my back pain was related as all of my symptoms had continued. I had researched my symptoms years before, and found this mouthful of a condition called ankylosing spondylitis. However, it was usually linked with some other auto-immune disorder, and I had nothing to connect it to. Until I developed UC.
I still didn’t say much as I was used to just dealing with it. Ibuprofen became my best friend, everyday, for years. It was the only thing that worked for the pain. But as the demands of being a full time ER nurse and a full-time grad student took a toll, the fatigue and pain worsened. I eventually ended up almost perforating part of my small intestine because of the years of ibuprofen. It was at that point, I came clean to my GI doctor about my pain and my pain management program. She said “you have ankylosing spondylitis.” The next week, I was seeing a rheumatologist. The AS diagnosis was made based off my story, I didn’t need to prove it any further. Although pelvis xrays did show fusing of my SI joints.
It’s been 2 years since my AS diagnosis. I’ve been on Humira ever since and it has been a life saver. Don’t get me wrong, there’s still good days and really, really bad days. But I now have more good days than bad as opposed to the opposite.
For me, I’ve found that staying physically active is my key to staying well. Even on the days that it hurts to get out of bed, I know I have to try and that I will feel better after pushing myself. These days, I work crazy days and hours as an emergency medicine nurse practitioner, so it’s a daily struggle to find time to care for myself. I’m still figuring it out. I used to think of going to the gym and running as a way to lose weight, but now, I look at it as necessary for survival. AS is not only a physical challenge, it’s also a mental challenge on a daily basis.
I am truly blessed to have a great care team behind me and know that not every individual with AS is as fortunate. I hope that we as an AS community can be a voice and advocate for those who are struggling and looking for answers.
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