Despite my rickets, I practiced for performance and competitive dance year round starting at age 4. My doctors always approved of my activeness because I was strong, happy, and they didn't see any signs I was harming my bones. I was a student at an artistic high-school (Grade 6 through 12) where I took ballet and modern dance classes during school hours along with my academic classes. The school dance company had a winter and spring performance. Also, I took classes at a competitive dance studio 4 days a week. I competed with solos and my team nearly every weekend in the spring, and, at the end of the season, we had a dance recital. Dance was my life, and rickets never kept me from any of it. I was strong, until I started having sharp pains in my knees when I was 14.
At Shriners during the summer of 2007, I shared my pains with my doctors and nurses. They concluded I was having growing pains. The doctors presented a surgical option to place staples and eight-plates on the outside of my growth plates near my knees. The surgery would connect the outsides of my growth plates together. As the inside of my growth plates finished growing, it would cause my legs (mainly my femurs) to finish growing straighter. The thought of surgery terrified me, but my doctor assured me the surgery would ease some of my knee pains. I wanted the chance to have stronger, straighter legs, so I agreed to have my first surgery.
My mom and I stayed in St. Louis the weekend after my usual week at the hospital. We returned Monday morning for my surgery. About month before I turned 15, I got my first 4 scars. I was discharged a day later, and my mom drove us home. I had to use crutches for a few months, since I had surgery on both legs, and did physical therapy exercises at home. By December, I was strong enough to dance solo in my high-school’s annual Nutcracker performance.
During my senior year (2008 – 2009), I started to have a strong pain in my left tibia, like a bad shin splint. Dancing and putting weight on it was extremely painful. Local doctors treated it like a shin splint by prescribing I use crutches again and take a small break from dance. In the end, the pain was fainter but never fully healed. Then, I went to college, walked all over campus, taught dance classes 3 nights a week during my freshman year. For the next two years, I attended college full-time and worked at Starbucks part-time. After so much strain and pressure over these three years, my tibia pain had gotten much worse. It was intolerable. My body started to compensate for my left tibia pain so much that I started feeling pain in my right femur too.
In the spring of 2013, I decided to get an x-ray, which revealed that my tibia had a severe stress fracture. The doctors said I had been walking on a 75% broken tibia and a small stress fracture in my right femur. The tibia fracture likely happened while I was in dance my senior year. Even though I had rested my leg when it was starting to break, my bones couldn’t heal themselves properly because with rickets I lack the nutrients my bones use to heal. (An average person can usually heal stress fractures with rest since their bones heal normally.)
I couldn’t believe I had been walking on broken legs. It was a scary realization because I was dangerously close to breaking my tibia all the way through, which would’ve been even harder for my body to heal. I was in the middle of a school semester and working a part-time job. Putting life on hold to heal seemed overwhelming and unmanageable.
Two weeks after my x-ray, I met an orthopedic surgeon, who specializes in working with athletes. During our meeting, he told me about his experience working with Rickets XLH patients in medical school. His plan and confidence towards my healing made me fell less overwhelmed and encouraged. I knew Dr. Sands would be the perfect surgeon for me, so we scheduled my second surgery for the summer of 2013.
A titanium rod was placed on the inside of my tibia from my knee to my ankle. Three screws hold it in place, two just below my left knee and one screw on the inside on my left ankle. We decided to wait to operate on my right femur to see if I could heal while I was resting from this surgery (spoiler alert: it did not). I was nervous about my second surgery, because a doctor would put a piece of titanium into my body. But, I knew this titanium rod would take away the pain and make my tibia strong forever. My second surgery gave me 4 new scars.
This surgery was the toughest to recover from physically. A few hours after the surgery, the physical therapist came to my hospital bed to see if you can stand up, and I *really* couldn't. My knee was in so much pain from where they had to move my ligament to place the rod into my bone. With all of the bandages and the weak muscles and ligaments, my leg felt heavy and impossible to lift or move. The next day after surgery I was able to shuffle around. I was discharged from the hospital two days after surgery. I used crutches for 2-3 months and went to physical therapy twice a week for roughly 3 months. I crutched on campus to attended a late summer course and began classes in the fall, just like I would’ve normally.
Surgery hadn’t interrupted my life as much as I had feared. Instead, surgery made me feel strong, physically and mentally. I couldn’t help but to feel strong because my body now contained one of the world’s strongest metals, much like a comic book hero. It was empowering to no longer feel pain in my tibia. I was so thankful for my titanium, and the new scars that came with it. The surgery gave me strength when I had felt weak for years. I felt confident in my body's ability again. I started wearing dresses to show off my scars. Almost a year later, I graduated college in May 2014 confidently walking in heels.
After I moved to Austin (July 2014), I worked in a retail store for a few months. I noticed a familiar pain in my right femur after working on my feet for hours. In early October an x-ray confirmed that my right femur stress fracture had gotten much worse. Within a week of the news, I scheduled my third surgery for October 31, 2014 in OKC with Dr. Sands.
A titanium rod specially shaped for my slightly bowed femur was placed from my right hip down to my knee. A special long screw holds it in place at the top of my femur where it connects to my pelvic bone (which means I can never break my right hip) and a screw holds it in place above my right knee. Surgery #3 gave me 3 more scars.
This surgery was the easiest recovery, even though it gave me my longest piece of titanium. When I woke up from this surgery, all I could think was “my butt hurts," because of the bruising from the surgery. Since my anesthesia was still wearing off and I was on pain-killers, instead of thinking this I would hilariously say, "My butt hurts," out-loud no matter who was in the room. Unlike surgery #2, I could stand well (while holding onto something) only a few hours after surgery. Bruce stayed in the hospital with me the entire weekend, and rarely left my side. I was discharged two days after surgery. I stayed in OKC with my parents for the next month, to attend physical therapy. I only needed to use crutches for 2-3 weeks until I could put full weight on my right leg without pain.
In my second to last week of recovery, I drove to one of my favorite coffee shops in OKC to get out of the house and read. When I entered the shop, I ordered my drink, found a table, and started reading. A few minutes later, the barista called my name and set my coffee mug on the bar. I stood up, crossed the shop, grabbed my coffee, walked back to my table, and sat down. The second I sat down I felt the soreness from the now small bruises, but I realized I had just painlessly walked. To anyone else in the coffee shop I was simply getting my coffee, but, in that second, tears came to my eyes and I smiled to myself over what I had just accomplished and this new life without pain.
I am so thankful, happy, and confident with my 50% titanium legs.