Mary's Going with Guts!

Track my progress as I train for my next Team Challenge half marathon for the CCFA

My Story

I was 11 years old here. I didn't look sick at all!

IBD started affecting my life when I was only 11 years old. Small, frail, and startlingly anemic, my pediatrician had my parents to take me to an oncologist at Schneider’s Children’s Hospital to test me for Leukemia, among other things. After several months of worry, grueling doctors’ visits and medical procedures, it was ascertained that my problem was coming from my gut. Shortly thereafter, I was diagnosed with Crohn’s disease.

During my junior year of high school, I endured my first hospitalization. It happened during the worst possible time, right at the beginning of my Varsity cheerleading competition season. I was having a flare-up (a period where symptoms of the disease become worse), and my gastroenterologist had started me on some new medication that was supposed to make me feel better. It actually made me feel worse.  I spent a few days in Schneider’s Children’s Hospital in New Hyde Park, NY.   I received a phone call from my coach after I made it back home. Because I missed too many practices, I couldn’t compete in our first competition. I eventually quit the team at the beginning of my senior year after getting sick on the bus after our first away football game. It was a humiliating experience, but it was just par for the course at that point.

I went through somewhat of a rebellion in college. Without the advice or support of my doctor, I decided to simply stop seeing him and stop taking my medication. I tricked myself into thinking that my body had gone into remission when that wasn’t exactly true. I was lucky enough not to get really sick during this time. I was generally healthy, or at least I thought I was. I managed to avoid having to see the doctor for almost eight years! I guess I figured that if I was REALLY sick, I’d be underweight. Since that was rarely an issue for me in my adult years, I didn’t think much of it.

So why did I go back? Eventually my body started to show signs of sickness that I couldn’t really ignore. My energy levels plummeted, I was fatigued and stressed all the time, and stomachaches started coming more and more frequently. While my symptoms were nowhere near as bad as they were when I was a kid, it was clear that something was going on. After years of being pressed by my parents to go back to the doctor and get “checked out,” I made an appointment with a gastroenterologist in West Islip, NY. After a round of tests, the same ones I had around twenty of years ago, I found out that I was indeed having another flare.

So here I am. I’ve been living with Crohn’s for about 20 years and counting, and there is still no cure in sight. Ironically, I am one of the luckiest Crohn’s patients out there. Most people affected by the disease are in far worse shape than I am; I’ve managed to stay out of the hospital (for the most part) and avoid surgeries. When I went to the Team Challenge informational meeting on February 9th, I met a 14 year old girl named Kaitlyn who suffers from Crohn’s disease, too. She hasn’t gone to school in two months because she is too sick, and she must receive her education at home! It makes my own troubles with the disease seem minuscule in comparison.

There are an estimated 1.4 people living with Crohn’s and Colitis. All of us have different stories. Some are downright heartbreaking. This is just another reason why I’m committed to raising money for the CCFA. While I’m lucky enough to live a high quality of life, there are so many people out there who have so much more to worry about on a day-to-day basis than I do. I hope you’ll help support me as I try to support them.

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