This year my birthday was a major milestone—this year, I rediscovered quality of life. Turning 34 doesn’t sounds like a big deal, but it was a new beginning for me. At 17, lying in a hospital bed immuno-suppressed with septic shock, my life seemed to be at risk; in spite of two years of aggressive treatment, I was losing my battle with Crohn’s-Colitis.
Just after turning 15, instead of playing practical jokes at band camp, I was having abdominal pain and spending more time in the outhouse than on the practice field. Even before tests confirmed it, I knew I’d inherited my mother’s GI disease. Shocked and scared, I understood from my mother’s strong example that while Crohn’s could be debilitating, it didn’t have to be self-defining. After the initial blow softened with the support of family, close friends, and an amazing care team, I learned to adapt to my “new normal,” an unpredictable life with chronic disease.
In 2004, I fulfilled my dream to move back to my childhood town of Marquette, MI. By that time, I had lived with Crohn’s–Colitis for half my life. Countless days of school missed due to hospital stays for malnutrition, dehydration, and GI bleeds- outings in wheelchairs or on crutches due to weakness or skeletal complications- and being socially ostracized were all behind me. I adapted my personal and professional lifestyle to minimize the impact of continuing challenges with blood clots and infections. I persevered thanks to the continued safety net of my team (Marc may be the most patient husband ever!) and the medical research community (Dr. Hanauer and Dr. Rubin are my heroes). I continued to have blood transfusions, iron infusions, and some major bumps along the way, but I had become a dedicated and successful nurse, friend, and community member.
Last summer I enrolled in a new drug trial for Tysabri™. I stopped bleeding and waking up at night to use the bathroom, gained hemoglobin (nature’s energy source), and for the first time in nearly 20 years safely enjoyed foods with color and texture. No more ghostly pallor, malnourishment or transfusions. I discovered energy and freedom to explore the north woods surrounding me, no longer needing to know where or even if a bathroom was close-by. This year, I swam, biked, hiked, paddled, ate, and smiled my way to a lifestyle I never dreamed possible.
I am not shy with my story. While celebrating my milestone with my lifelong friend Josh Rice, he challenged me to join him as a participant, rather than honoree, in the CCFA half-marathon this December. I will be running to show that I can—proof that funding research makes a difference. Please join me in celebrating the possibilities with your financial support.