Tackling AS Pain, Postpartum

After giving birth to my second child in July of 2020, I was in constant pain. I brushed it off, chalking it up to a bad epidural and weak core. But carrying and holding my baby daughter hurt more than it should. More than I remembered with my son.

I was adjusting to postpartum life during the pandemic, so I spent my days with my two kids, pacing the house. One day, my husband joked that my stride had become more of a shuffle, as I would slide from room to room. That comment was what first brought my attention to it. It was a dull pain, but it clearly affected the way I moved. At first, it was easy to ignore, mostly because it was inconsistent. But after several weeks, I realized how much louder the pain became at night. It would creep in, deep in my low back where my back and hips met, as I lay reading bedtime stories with my three-year-old. It would also keep me up after midnight feedings of my infant, tossing and turning to find a comfortable position. The combination of months of poor sleep while masking pain was wearing on my mood.

I stopped ignoring the pain and started addressing and rehabbing it in the ways I knew how as a competitive athlete. A bit more about me: I have a degree in exercise science, over a dozen fitness certifications, I’ve interned in rehabilitation settings, and have coached thousands to overcome obstacles as Spartan’s longest serving coach. I go by the nickname “Baboon” and am (was) a competitive obstacle course racing and ninja athlete. I even owned a performance gym before the COVID-19 shutdown.

I was able to return to training, but at rest my body felt like it would glue up and get stiff, or “sticky” as I say. As long as I made “me time” to do some movement and corrective exercises, I felt like I was in control. But life with a newborn doesn’t allow you to warm up and lifting my baby would ignite my back. Waking up with cold muscles and going straight to caring for my kids was hurting me more than I wanted to admit.

My chiropractor and primary care doctor offered some relief (along with NSAIDS). They gave a name to what I was treating myself for: sacroiliac joint dysfunction. I followed up with an orthopedist so I could get a cortisone shot. But he came back with unexpected news—he said the high inflammatory markers in my blood (along with the inflammation in my spine) indicated rheumatoid arthritis (spoiler alert—he wasn’t quite right). I was relieved to know I wasn’t crazy, but I got this diagnosis a week before my scheduled total hysterectomy. So I put the new diagnosis on the back burner.

At 37, I entered surgical menopause to protect myself from BRCA2-related cancers—I was afraid this gene mutation would affect me just as it had every woman on my mom’s side. I have always been deeply aware of my risks, so I built a career around being as healthy as possible and sharing that with people. In 2012, I prophylactically removed my breasts (sharing my journey on my YouTube channel) and was even featured on “American Ninja Warrior” for the recovery program I created for those affected by breast cancer-related surgeries (Season 7, episode 4). I had been mentally preparing for this surgery for a long time. I knew I was going to be restricted from holding my kids during recovery, so I hoped my back pain would subside.

At five months postpartum, and only three weeks into my surgical recovery, I felt awesome! However, some unexpected news arrived: pathology reports revealed a placental site trophoblastic tumor (PSTT), a rare cancer. I was immediately scheduled for another trip to the operating table. Praise the Lord, post-surgery I was cancer-free! The emotional pain of everything I’d been through fueled my races and got me back to the Spartan podium by April of 2021.

Still, I couldn’t “fix” my back, and was dismayed that the pain was only getting worse. Simple, everyday tasks were becoming difficult. No matter how cute and distracting my kids were or how holistically I tried to approach my pain, by summer it felt unmanageable. I was desperate for a better quality of life. The only time I felt like I owned my body (and mind) was when I was able to train. Training in the “pain cave” has always been therapeutic. I was performing like never before. But somehow cuddling with my family was a struggle?! All the emotional pain I was burying only added to my physical pain, and vice versa. Perhaps the intense training was making things worse, but at the time I didn’t care. Training was the only time I could quiet the noise and feel like myself again.

I finally saw a rheumatologist, who immediately mentioned ankylosing spondylitis (AS). I had never heard of this disease, but it fit everything I had been experiencing. It was a relief to finally have the right diagnosis, and it was clear I needed real intervention if I wanted to avoid permanent damage.

In September, I gave one last hurrah at the 2021 World OCR (obstacle course racing) Championships. I crushed the course with a smile on my face and landed in the women’s top 10 in the 3k race. It was my swan song to the sport I built my life around and it was the perfect goodbye.

My training plan looks a lot different these days. It’s like I’m constantly preparing for a competition—only now the finish line is remission. Every day I stretch and do range of motion exercises. I stay hydrated and watch my nutrition. I use heat therapy (sauna is life!). And I work on my mindset.

Having AS means I can’t be still very long without experiencing pain and stiffness, so I am constantly moving around or just suffering in silence. Sometimes AS can feel like Groundhog Day; I work every day to improve my mobility, only to wake up stiff again the next morning. I look healthy and fit, but I operate between five and 10 on the pain scale.

Since starting biologics, I have had periods of relief. But when I feel good, I want to play like I used to (like throw my kids around), which puts me right back at the starting line. Sometimes the flare-ups are so severe, it feels like I’m slowly becoming handicapped. Driving is the latest thing that wrecks me. Stepping on the pedal can feel like a knife in the spot where it all started, igniting a pain chain through my whole body.

Despite being discouraged at times, I continue to lean on healthy habits and believe in a positive outcome. I used to feel betrayed by my body. But I have learned that holding onto emotional pain and stress will only exacerbate symptoms. I find mindset work is just as important as movement. Every day, I choose to focus on the good, instead of what has been taken away. I’ve come to a place of gratitude. I am blessed to have a supportive family who steps up and understands that some days I can’t do as much. My main goal is to be well enough to take care of my family and enjoy my children.