A Mysterious Illness Deformed My Hands and Feet But That Won't Stop Me From Doing CrossFit
Maggie Shemenski shares how CrossFit became her lifeline after she contracted a life-altering illness.
Three years ago, my life was what most would consider 'normal.' I had a thriving business of my own, I was raising my wonderful son and was getting ready to marry the man of the dreams. Then, in July of 2017, I started to develop a series of bizarre symptoms that led to the disfiguration of my hands and feet in just over a year's time. By the end of that year, my limbs stiffened to the point that I could no longer effectively use them anymore. It got to a point where I believed my life was over but, ironically, finding CrossFit, one of the toughest workouts out there, ended up being the source of mental and physical strength I needed to get out of my own way.
But if that all sounds too shocking and too "happy ending" to be true, let me walk you through how this scary and life-altering health journey began. Then, you'll truly understand what to took to get to where I am today.
My Lifelong Battle with Weight
My weight is something I’ve struggled with my whole life. Growing up, I had what most would consider an ‘athletic build’, but I was never truly happy with my body. While my weight constantly fluctuated, it didn't become a serious issue after I had my son in 2011.
He was born with a rare disease called Gastroschisis and was in the NICU for two years. Needless to say, I wasn’t thinking about myself or my wellbeing during this time. While other moms were breastfeeding and getting re-acclimated to life, I was watching my son flatline over and over again and was spending hours and hours in the waiting room while he fought for his life in surgery.
Hospital food became my go-to, which, unfortunately, isn’t the healthiest, I wasn’t breastfeeding, and I wasn’t active—all of which caused my weight to skyrocket. By the time my son was healthy enough to be brought home, I weighed 300 pounds and doctors declared me morbidly obese.
Still, the numbers on the scale weren't enough to force me to take my health seriously. After continuing to neglect my body for two more years, I suffered a transient ischemic attack (TIA), also known as a 'mini-stroke', that landed me in the hospital, at the beginning of 2016. Doctors determined that it was linked to my weight, which was the wake-up call I needed. While I knew my fiancé at the time would always be there for my son no matter what, I wasn’t about to let him grow up without me and knew I needed to make a change.
As soon as I recovered from the stroke, I signed up for a membership at Gold’s Gym and began working out. Not knowing where to start, I strictly used the treadmill and stair master in an effort to lose weight fast. But I wasn’t enjoying myself at all. (Related: How to Get Back to Working Out When You Took a Break from the Gym)
A couple of weeks into my new routine, I ran into an old high school friend who owns his own CrossFit gym and invited me to come train. Even though I'd never done a workout like CrossFit before, the transition was smoother than I'd imagined. TBH, it was actually love at first lift. Being a competitive person, it was the perfect workout for me. I started looking at exercise as something to look forward to instead of a chore. (Related: 15 Health and Fitness Benefits of CrossFit)
During this time, I also started working with a nutritionist who taught me how to eat right for my body and for my goals. She put me on a strict diet where I was always in a calorie deficit. This approach isn't recommended for everyone, and often times, this kind of eating can cause you to gain the weight back even faster. But in my case, I needed to lose weight as quickly as possible so as to not jeopardize my health even further, so it was the appropriate solution for me.
Over the course of 7 months, I lost 70 pounds. For the first time in my life, I had started to feel comfortable and confident about my body. I felt strong, and, in turn, empowered. Little did I know, that feeling would be short-lived.
Developing Unexplained Symptoms
Then, during a beach trip with my family to the Outer Banks in July of that same year, out of nowhere, my fingers started hurting and my calves swelled up. Like most people, I did a quick Google search to see what these symptoms could mean but didn’t find an answer that sparked any particular concern. So I took some over the counter anti-inflammatory medicine and hoped that the symptoms would eventually subside. (Related: Is an Online Diagnosis from WebMD, Mayo Clinic, or Other Sites Safe?)
Shortly after our week-long vacation, I had a crazy three-week tour around the country for work. By the end of it, I was exhausted but noticed that something about me was a bit off. Yes, I’d just come off an insane trip, but even when I got back into my regular routine, I wasn't able to recover as quickly as I used to from my workouts. Getting up in the morning felt harder than usual as well and my energy levels were at an all-time low.
A few days later, at the beginning of August, my fingers pain got worse and my fingers started to curl into a tight fist shape and became really rigid. While I suspected during my travels that my body was going through something weird, I never could have never imagined that it would manifest in this alarming way.
I immediately set up an appointment with my regular physician, who initially thought I might have carpal tunnel or arthritis. After a couple of blood tests, he found seriously high levels of Creatine Kinase (CK), an enzyme found in the heart, brain, skeletal muscle, and other tissues. Increased amounts of CK are usually released into the blood when there is muscle damage. (Related: Doctors Ignored My Symptoms for Three Years Before I Was Diagnosed with Stage 4 Lymphoma)
Following that test, I was told to set up an appointment with a rheumatologist. I saw one doctor in September and went to another in October for a second opinion. At this point, my fingers had stiffened significantly more. To give you a visual, all my fingers had folded toward my thumb and were literally stuck there, stiff. I could no longer move them or unfold them, no matter what and I was in pain.
Just when I thought things couldn’t get any worse, I started getting these bizarre muscle spasms. My calves and forearms would contract so hard that my muscles and tendons would visibly pulsate out of my body. These spasms would last from anywhere from two to 10 minutes and were more excruciating than even childbirth.
The rheumatologists had ruled out any form of arthritis and we were starting back at square one. No one could figure out what was wrong with me. The feeling of helplessness I felt was almost inexplicable, and I didn't know who else I could turn to.
My final resort was to do an Electromyography (EMG), a test that measures muscle response or electrical activity to a nerve's stimulation of the muscle. To stimulate the nerves, needles are placed through the skin and into the muscle. (During my test, needles were placed all over my body.) Then doctors use an audio-amplifier so that the activity in your nerves and muscles can be heard. In my case, every single muscle sounded like dial-up Internet.
While that was obviously a huge cause for concern, for the first time, I felt like doctors had something to go off of. I immediately saw a neurologist at a renowned hospital who diagnosed me with something called, quite directly, Stiff-Person Syndrome. That was in 2017, about six months after my initial symptoms. After finally getting some kind of diagnosis, I couldn’t help but feel a sense of relief.
Next, I was given a checklist of treatments that would ensure my disease didn’t progress any further. But after several rounds of these treatments, my symptoms still continued to worsen. Like my hands, my calves and Achilles tendon at the back of my ankle started to contact into an inward disfiguration. Bones began protruding on the outside of both of my feet, and my toes started to crinkle up as well. It's crazy to say this, but the bottom half of my body morphed into a kind of mermaid-like tail. I went from walking into my doctor’s appointments with my own two feet, to eventually needing to be wheeled out. (Related: 7 Symptoms You Should Never Ignore)
At this point, doctors began reassessing their original diagnosis of stiff person’s disease and just started throwing various medications at me. They had me on everything from prednisone, a steroid, to muscle relaxers, but nothing worked. As a sort of Hail Mary, I was put on chemo, but the first round didn't seem to do anything to improve my symptoms. I also started episodes where I was short of breath. These attacks were similar to the muscle spasms I was also experiencing, but now, they were also in my diaphragm.
My life had been turned upside down. I couldn’t do anything on my own, whether that was brushing my teeth or go to the bathroom. I had to give up everything I loved: my job, spending time with my family, CrossFit. And on top of it all, I was trying to get married and I had a daunting goal of being able to walk down the aisle. With great difficulty, I did, but not without a lot of support from my dad. I wanted to show my son that I was strong and happy on one of the most important days of my life.
Unfortunately, the day after my wedding in April 2018, was the last day I walked.
Monday following my wedding, I was scheduled for my second round of chemo. While the first round didn't deliver promising results, doctors felt that I might need more treatment to begin to see improvement. Thanks to a very compromised immune system, I ended up with pneumonia and spent a couple of weeks in the hospital. After that round of chemo, I was in the hospital every two weeks until Thanksgiving because my health continued to decline. My pneumonia kept coming back, they found blood clots in my lungs, I had to have surgery to place a permanent port in my vein so that doctors could administer IVs whenever they needed, and I kept getting infections and building a resistance to antibiotics. It was a vicious downward spiral.
Doctors eventually came totally clean to me: They didn’t know what was wrong with me and that there was nothing more they could do. Rather than continuing treatments that clearly weren’t working (and making me sicker), I made the decision to stop all medication and just start living my life, even if that meant I was undiagnosed and disfigured.
Falling In Love with CrossFit All Over Again
In December of 2018, I returned home disheartened. I was in a very dark place and was uncertain about what the future held. Then, in January, I discovered Wodapalooza—this massive CrossFit festival held in Miami every year that's open to anyone to compete as an individual or on a team of three. After watching a bunch of videos of the event online, I learned that they had an adaptive program for athletes with disabilities. I saw all these incredible athletes doing all of the things that I was doing before I got sick, just differently. Right then, I told myself that I was going to Wodapalooza the next year no matter what it took.
When I told my doctor my newfound dream, he was a bit weary. Since my body had become so stiff because of my condition, he told me I had to stretch my body every day for 10 weeks to avoid further injury before I could even think about doing CrossFit again. But even when I was cleared to return to the box, I had to relearn how to do everything. (Related: Spina Bifida Hasn't Stopped This Woman from Running Half Marathons and Crushing Spartan Races)
I remember the first time I walked back into my CrossFit gym, I told myself that I was going to stick out no matter what, but I was worried no one would know how to help me complete the workouts. I knew I had to be patient, but the members of my gym surprised me in unexplainable ways. Rather than staying out of my way, they helped me re-establish myself as an athlete. From helping me learn how to grip a barbell again to creating the tools I needed to do almost every CrossFit workout, these people helped me become the adaptive athlete I’d dreamt of becoming. They even created the hashtag #MermaidStrong, as an ode to my disfigured legs. Now, I proudly use the hashtag on social media to share my workouts and hopefully inspire others to be the strongest versions of themselves no matter what life throws their way. (Related: Why One Woman Started Crushing CrossFit Workouts After Losing Function In Her Leg)
In October of 2018, the auditions for Wodapalooza began. In my opinion, I wasn’t ready, but I signed up anyway just to see if I could do it. I was looking to qualify for the seated athlete division, where competitors do exercises seated versus standing to accommodate the inability to utilize the lower body for the skills. To be selected, you have to post videos of yourself doing six different workouts, picked by Wodapalooza at random, to the best of your ability. While that sounds easy enough, I wasn’t like other seated athletes. I didn’t have the use of my hands, I just had hooks. I also performed each exercise on my knees because the heavy hooks make me unstable. Other seated athletes, actually sat on a bench or chair. So for all the events, I knew I had a chance of being disqualified because I wasn’t going to perform the workouts like other competitors. But I wanted to take the chance anyway.
I submitted my videos and a couple of weeks later, final results were posted. To my absolute surprise, I had come in second out of everybody in my division and was headed to Wodapalooza. (Related: Pro Adaptive Climber Maureen Beck Wins Competitions with One Hand)
Qualifying for my first Wodapalooza was the turning point of everything—not just my own mindset, but my family started to see that I was going to be okay, that I wasn’t going to let this dark cloud follow me forever. I developed a whole new perspective of my new world and began to feel comfortable with my body and what it had turned into. Without wasting a moment, I got straight into competition mode. I began training five to six days a week, I was eating cleaner than I ever had and I was ready to go out there and give it my best. Did I think I was going to win? Not a chance. But I was going to give it everything I had. (Related: I'm an Amputee and Trainer-But Didn't Step Foot In the Gym Until I Was 36)
The event itself was everything I’d imagined and more. The energy was inexplicable and when I looked into the crowd and saw my village of people cheering me on, I knew that it didn’t matter whether I placed first or last. The fact that I made it here meant everything.
Through this tumultuous journey, CrossFit has been my lifeline. It has been something I can depend on and has made me realize that I am still an athlete and able. Even though I can't crush workouts in exactly the same way that I used to, I can still compete and feel empowered by doing so.
Even though I spent years struggling with my weight and body image, somehow, it's now that I feel more comfortable and confident in my skin than ever before. I've found the strength to make peace with the fact that I'm still undiagnosed and dealing with crippling symptoms that are still evolving. Still, it doesn't matter. What's important is that I'm mentally prepared for whatever the future holds. This is my new life, and I’m going to do everything in my power to embrace all of it.