I was 12 when I first stared up at my bone scan, watching my bones brighten like lights on a Christmas tree. I thought it was pretty cool to see the insides of my own body while I had radioactive serum in my veins, and felt a little like Spiderman when he started figuring out how to use his powers for good. But the reality was more serious, and not at all imaginary. Bright spots on a bone scan signify serious inflammation in the body. My parents were told by my doctors that it was either cancer or a rare disease known as Chronic recurrent multifocal osteomyelitis, or CRMO for short. The team of doctors studying my case at Stanford were able to take out small bone samples during a biopsy and officially diagnosed me with CRMO, to my parents’ relief (kind of). Then came the part where we, and my doctors, figured out exactly what CRMO was, and how to treat it.
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It started with intense pain in my right foot, then my right shoulder, left knee, and a vertebrae in my mid spine. Think someone scraping at your bones with a scalpel, then muscle pain to top it off. I used to be called a crybaby by my soccer coach, who thought I took breaks during practice because I was tired. On the contrary, I just wanted to be able to run like the other girls, and wanted my old life back. I didn’t understand why I was unable to put weight on my foot. The year before, I had almost broken the middle school girls’ record for the half mile. Now I was sitting on the sidelines, nursing invisible wounds. After a few months of seeing chiropractors, foot doctors, and many other specialists, I was given x rays and diagnosed with a benign tumor in my foot (inflammation in the bone looked a lot like a tumor). Now who’s a cry baby, coach? When I told him I had a tumor, he stopped calling me names. Small victories. I was 11 so I was pretty psyched to tell him “I told you so.”
But with my final diagnosis I wasn’t so happy. The tumors the doctors had once seen were now something more vicious; active lesions where my body attacked itself, causing irreversible damage to my bones and inflammation both inside the bone and in the surrounding muscle. What was wrong with my body? For a 12 year old, this was a lot to take in. We weren’t sure where to go next, so we tried a lot of different medications. Prednisone helped for a while, but my face swelled up like a bloated full moon. My middle school dance pictures are rough to look at to this day. Colchicine made my stomach hurt. So did sulfasalazine. Methotrexate wasn’t much of a help, in pill or injectable form. Aleve (or naproxen sodium) helped a little but only barely took the edge off the pain during really bad flare ups. Basically, I was a living guinea pig for a team of Stanford rheumatologists, who had a 1:1,000,000 case at their disposal. Not that I don’t appreciate their caution in moving up the ladder of drugs, as some are more dangerous to try than others, especially at such a young age, but it was hard even remembering a doctor’s name when I had five or six of them. Plus getting new medications every few months got exhausting, and my pain continued on. I was forced to quit soccer, flag football, horseback riding, and I ended up even taking a break from playing drums once in a while because of inflammation in my fingers and wrist.
Things just weren’t looking up.
Then I got on TNF inhibitors (immune suppressants that work surprisingly well with my disease). I started riding horses again and rode with my mom most days of the week. I began playing drums more seriously, and eventually got into Chapman as a music major. And I registered with Chapman’s Office of Disabilities, which has made medical-related absences a lot easier for my professors and I to deal with. I’m a senior now and though I switched majors due to issues playing drums related to flare ups from my disease, I’ve found a new path in the arts. I’m going to be graduating in May with a BFA in Studio Art and I’ve found my niche in an art world full of misfits and dreamers who see beauty in the strangest of places. I’ve been thinking more about making work related to my experiences with pain. With each painting I work on my pain fades a little bit because I become distracted by the art making process, and heal a little bit every time I create a piece I really love. The arts have opened up an alternate world for me, one in which I can escape pain into.
Though I’ve still been dealing with a lot of CRMO flare ups recently, I still see a silver lining, and take every pain free moment to hike, horseback ride, or just be a normal 21 year old woman (which sometimes involves socializing and/or dancing terribly). When the pain hits, there’s always Netflix and chocolate. It’s all about the silver linings.
Sometimes people judge me unnecessarily due to CRMO, a disease that affects me daily but is invisible to them, and I’ve learned forgiveness as a part of that. I’ve learned to tolerate pain from the lesions I have all over my body, and I’ve learned patience from dealing with bouts of inflammation that never seem to end. Oh, and also from talking with insurance for hours on end (who knew being an adult required so much patience). I’ve learned to have a good attitude and a strong work ethic due to time spent volunteering with a horse therapy organization, and I’ve learned to smile from classmates who show they care in small or big ways. I’ve learned acceptance from Chapman’s Disabilities Services, and from professors in the art department who have done so much to make my education better. I’ve learned about unconditional love from peers and parents, and I have found there is always light in the darkest of times, if you know where to look for it. I’ve learned from my disease, and even though it sucks a lot of the time, the silver linings are there, and I’ve become a better person for having CRMO.