|One Breath at a time.Dear Family, Friends and Patients,Raising money for research means so much to me. Thank you for your support without which this could not be a success. To truly beat this disease, we need to find a CURE.
When I was first diagnosed with Ulcerative Colitis, at age 15, I felt the love of my family around me. Each day my mom would spend at the hospital keeping me company and playing backgammon. In the evening my brother, sister and father would come after work. Their support and cheer gave me strength. Following my surgery I became healthy again and I felt like I had beaten the disease.
It wasn’t until my husband, Craig and I decided to have children that I had to look again at what impact this disease and surgical complications may be having on my life. After years of trying to conceive and using advanced fertility methods, we concluded that I was unable to carry a pregnancy and decided to take another path. It took 8 long years but we finally had success, with the delivery of our boy/girl twins, carried by a loving surrogate. Again, I thought that I had beaten this disease.
The last 10 years, I have suffered from chronic bronchiolitis. My immune system, now unable to attack the colon, is creating inflammation in my lungs. While not terminal, it is like having chronic pneumonia and treatments can only manage it but not cure it. I suffer from a chronic productive cough and frequently develop infections. I have a port in my chest for IV antibiotics that can be delivered at home and around the clock. Normal peak flow (a pulmonary function indicator) for a woman my height/age is 430. I have found that I can still run long distance when I am at 300 or about 70% lung function. The last 6 years I have run half marathons with Team Challenge to benefit the CCFA. Last season was particularly difficult, as I spent most of the season with a peak flow ~ 250. Instead of running, I trained by hiking hills with my weight vest to build endurance. On race day, I stayed up through the night inhaling medications to open my lungs and decrease inflammation. Slowly through the wee hours of the night my peak flow climbed from 250-260-270 and finally as I left my hotel room 300. I unhooked from my IV medications and joined my team. We ran through the rolling hills of the Napa vineyards, team-mates in orange and blue cheering the whole way. I felt I had beat it again, this time one step at a time. It was an amazing run and I knew it would also be my last.
Now, I focus on climbing. I focus on my breath. When you are straining to make a move or feel anxious, it is easy to hold your breath, but I focus on keeping calm and breathing evenly. Technical climbing is actually a good but strenuous sport for someone with a lung disease; it is very slow and methodical. The staff of Stone Gardens have become my partners. Each week I feel like my skills for overhangs and my aid techniques are getting more dialed, so I can relax. Climbing in Yosemite is a stark contrast to the rolling hills and screaming team-mates of Napa. The Leaning Tower is 110 degrees steep and it couldn’t be more alone. My guide from YMS will lead the climb and I will follow, just the two of us, alone on the wall. My pulmonary function has continued to decline. I get stronger physically to compensate for ~50% peak flow. Although I have always carried my own haul bag (about 40+ lbs of climbing gear); this year another climber will have to carry it to the base of the route for me. But, once I leave the ground, I will beat this disease again, one breath at a time.
Thank you for your support,
Never, Never, Never Give Up,