There were only a few drugs that could be used to treat me. Prednisone had failed, so the neurologist picked the lesser of two evils that were left. I was given a CT scan to make sure my liver was healthy before being placed on Imuran, an anti-rejection drug used for transplant patients. Imuran is also an immunosuppressant, and like Prednisone, has some nasty side effects. I had to get a blood test once a month to make sure my liver was functioning properly. I started Imuran, while tapering off the Prednisone. After my dosage of Prednisone was cut out completely, the Imuran seemed to do its job. My liver remained healthy, thankfully, but I would soon be plagued by an unusual side effect. The only piece of physical beauty I thought I had left, my long, beautiful hair, started to fall out in clumps. I had to get it cut short, further accentuating the “moon face” the Prednisone had left me with. I didn’t lose all of my hair, but enough that my parents took me wig shopping. The wigs were so expensive, hot and heavy that I decided against it, and started using Rogaine. I’m not sure if it worked at the time, but my hair eventually did grow back.
After half a year of success with the Imuran, the neurologist decided it was time to try to taper off the drug to see if my strength would remain. Around that time, we discovered an herbal supplement being sold on TV, that was helping MS patients. We decided it couldn’t hurt anything, so I started taking it.
By now, it was 1997, and my junior year of high school. Things were starting to finally look up for me. I scored a lead role in my school’s production of Fiddler on the Roof. I also made the semifinals in the Governor’s School for the Arts portfolio competition (for fine art). It was both an exciting and nervous time as we tapered the Imuran. Amazingly, each time we tapered the dose, my strength would remain. At the end of the school year, I was taken off Imuran completely! I finished my high school career drug-free, and graduated with top honors.
With my health in full-bloom, my parents had no qualms about sending me three hours away to college in Kutztown. I spent the next four years reclaiming my life and thriving in a great artistic community.
A few months after I graduated, I landed a job at an advertising agency. Unfortunately, sitting all day wasn’t helping me to lose the weight I had gained from the Prednisone. I knew I needed to do something, and in May of 2005, I joined Weight Watchers. As I started to lose weight, I became more active, walking for miles. Eventually walking became boring, and that summer, my friend Siobhan suggested I enter a 5K race. At the time, I had no idea what that even was. In fact, I thought my friends who ENJOYED running for miles on end were crazy! I wasn’t even sure if my body would allow me to do it, since I still battled fatigue now and then.
I started incorporating jogging with my walking, and trained for and completed my first 5K race at Indian Park. Over the next several years, I would lose 70 pounds, and run quite a few 5K races, a 10K trail run, and an 8-mile race. With the weight loss, I was at the top of my game, and so thrilled to finally be an athlete, which I had longed so much for when I was sick. I finally felt attractive too!
A few years later, I had gained back all the weight I had lost, plus some more. I tried to handle my food addiction on my own, and I just couldn’t. Difficulties at work, stress, loneliness and discouraging peers elsewhere made me turn to bingeing again. I felt fat, unattractive, unhealthy and miserable. Plus, I missed being active and running. In January of 2014, I decided to go back to Weight Watchers, and I started losing again. In April, I entered a 5K, and did several more throughout the year.
Fast forward to May 2015. I am 42 pounds lighter than where I started last January, and I’m starting to reclaim my fitness. I know that I have a lot more weight to lose, but I know one surefire way to get there…train for a triathlon! My goal for this summer is to complete the LARA tri in Lewisburg in August! I am setting out to do something that I believe hasn’t been done by someone with CIDP!
Twenty-one years after my diagnosis, I am still completely healthy! They still don’t know what causes this disease, and science really doesn’t have an explanation of my miracle. I do believe I was healed by my faith. You may disagree…but I am living proof!