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!

From the fall of 1994 to summer of 1995, I underwent either bi-weekly or monthly IVIG transfusions, depending on how quickly my strength would fade. My mom and I used a “grip test,” where she judged my strength by how hard I could grip her arm with my hand. We were able to stop the progression of weakness each time before it drained me to the point of paralysis. However, after so long on the IV drug, my veins started to dilapidate, and it became increasingly harder to find places to inject the IV tube. We decided to go down to Hershey to get their opinion on what we should do next. I remember praying so hard that day that God would instantaneously heal me, because I didn’t want to undergo any more scary tests or pain. Even though I wouldn’t get my healing that day, I didn’t have any testing done, and we went home with advice to put me on Prednisone.

In 1994, I was a typical 14-year-old. I loved drawing, singing and playing instruments, video games and spending time outside playing sports and studying nature. My faith in God was strong, and towed the line between making my life in junior high miserable and keeping me grounded. I had a great family, and a few friends who put up with my creative wackiness. Life was pretty good…until mid-June.

At first, we thought it was a bug bite that caused the numbness. My whole body felt like that feeling you get when your foot is asleep…only it was my entire being. Since we lived in the country, my family thought I got bitten by a tick or spider. My parents weren’t really worried about it, since I was fine otherwise.

I don’t remember having any other problems until a few days later when I was playing soccer with my friend Sue. I tried to jump and couldn’t get off the ground. Terrified, I went to my mom, who scheduled me an appointment with our family doctor. When the time came for my appointment, my doctor was stumped. We told him I had recently recovered from a chest cold, so he ordered chest X-rays and blood tests for the next day. The tests didn’t find anything wrong with me.

Meanwhile, I was getting progressively weaker. I lost the use of my hands and arms, and almost all the strength in my legs. When we went back to the doctor for the test results, he said he thought it could be MS. I was devastated, and pictured myself in a wheelchair for the rest of my life. We eventually had to borrow a wheelchair from our church, and I needed help getting up from a seated position. My health had declined to the point where we scheduled an appointment with a neurologist.

The day I saw the neurologist, I remember pretty well. I was at the point where I couldn’t feed, dress, bathe, or otherwise take care of myself. It took two people to get me on my feet, and I couldn’t walk far. My grandfather tried to get me out of the car by himself and dropped me on my knees on their gravel driveway. Ouch. The doctor was somewhat puzzled at how my symptoms presented themselves, but after a few tests, gave us the diagnosis of Guillain-Barre Syndrome (GBS).

My family had never heard of GBS, but my family doctor’s guess of MS wasn’t too far off. It’s in the same family of diseases, autoimmune in nature, where a person’s immune system sees the fatty layer of myelin that protects our nerves, as foreign. Without myelin, the nerves and muscles can’t communicate properly, and the muscles start to atrophy. The neurologist said we caught this just in time, because the disease could have attacked my vital organs and easily killed me.

I was immediately admitted to the hospital, given a series of unpleasant (at best) tests, and officially diagnosed with GBS. The doctors started me on a course of IV medicine, which I continued for the next few days. Slowly, my strength returned, and by the fourth of July, I was released to go home. I remember watching fireworks with my family and friends that evening, amazed at the miracle that just happened. I was very close to normal strength again, and the numbness was gone.

The rest of July was a celebration of life for my family. My church family praised God for the miracle I received, and my story was told over and over again. It was still fresh in my mind, though, and still a very scary thought. I never wanted to go through that again!

Unfortunately, as I spent a day in August at Knoebels celebrating my brother’s birthday, I realized that I was numb once again. I was scared to tell my mom what was going on. What did this mean? Why was I numb again? Instead of undergoing more tests, the neurologist admitted me directly in the hospital again. He also changed my diagnosis to what he called relapsing-remitting Guillain-Barre, better known as CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). Basically, he was telling me I had a disease that very few knew about, and each case was different from the next. It is chronic, it has no cure, and there is a chance I could have it the rest of my life. I was put on a course of IVIG again, and was released from the hospital.

When school started, I struggled through each day. A backpack full of books was increasingly difficult to carry. By October, I was assigned a homebound tutor and finished the rest of my freshman year at home. I spent a few hours every few weeks getting outpatient transfusions of IVIG to bring my strength back up. I underwent physical and occupational therapy as well. It always seemed like the transfusions didn’t last very long. My strength would quickly fade and the numbness would return.

To be continued…

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