Peddling Toward Wellness – A We Are Well Winner’s Brave Battle
This is an installment of a monthly series that will tell the stories of DaVita’s 2018 We Are Well Award winners, in their own words. The We Are Well Award recognizes teammates who have worked to improve their physical, social and emotional health, often using DaVita-sponsored wellness programs.
My journey to be well started when I was 17 years old and started getting sick. It started when I found out I had Crohn’s disease, which I have now battled for 21 years. That battle has included countless doctor visits, procedures, tests (and tests and tests and tests), hospital admissions, and nearly losing my life to complications in 2010. I have fought anemia, infections, scaring, pain, restroom issues, and some days, I’ve fought just to feel well enough to get out of bed. And I have chose to fight my battle, to won my Crohn’s, with the most positive outlook I can. This means that within the last year when Crohn’s complicated neurology issues, including a cavernoma (a persistent brain bleed) and status migraines, I chose to not give up on the things that I love – the things that keep me well. Most notably, this means I have pivoted and adjusted my love of cycling from the road to the trainer.
To keep my Crohn’s stable, I receive an infusion every six weeks through a port implanted in my chest. I also take methotrexate pills weekly to help avoid peaks and valleys in my symptoms. All of my medications are immunosuppressive, so I have to be extra careful about infections and getting sick since my body cannot fight things the same way as someone with a healthy immune system.
One of the things that is so important with Crohn’s – an incurable autoimmune disease that impacts nearly every bodily system – is to stay active. This keeps my body in the best shape possible to fight my disease, and it keeps my mind from settling on the scary and not-so-happy parts of it. Having had surgery on both knees and both hips, I’ve had to move on from running and was fortunate enough to find cycling three years ago. I did so with an amazing group of Crohn’s patients through the Team Challenge program and last November I completed a 55 mile race in tough conditions (90 degree heat, 20 mph winds, more hills than I can count and a bowel obstruction that meant I couldn’t eat anything solid for 34 miles of the ride). I fought for the finish line and was so proud to reach it, along with the pride I felt in having raised over $5,000 to help find a cure for my disease. I was immediately set to train for my next event. But Crohn’s had other plans.
Because a lot of medications have negative interactions with Crohn’s, there are limitations on what I can take to treat my neurology issues. Those issues have flared in the last eight months in a way that would make a fall and hitting my head, even with a helmet, dangerous. Not being able to take the “usual” medications to treat this means that until it is all in order, I cannot ride my bike outside. Not only did this cause a change in plans for my next planned cycle event, but it caused a change in plans in how I can even remain active with my bike.
Just like I have done hundreds of times when Crohn’s causes a change in plans, I have pivoted and adjusted to how I live life, but refused to stop living it. I bought a trainer to use with my bike indoors and continued with my pedaling. I ride nearly every day, even when Crohn’s has me feeling so run down and my neurology issues are a struggle. I closed out 2017 with over 2,500 miles on my bike in the trainer. I keep fighting for a cure and keep fighting for a quality of life that I deserve. While pedaling in the trainer isn’t what I wanted to be doing, it has allowed me to build a solid distance base in the miles I can pedal, all while staying safe and not risking a fall. I want to be outside, feeling the wind and enjoying the downhills. And I know I’ll get there with patience, perseverance and fight. And when I do, I’ll be on track for my 100-mile ride set for 2018.
With every mile I pedal, even on the hard days, I am taking back some of the control Crohn’s has tried to steal. I am getting closer to the cure I need for my disease. And I am getting stronger and stronger each day. I regularly pedal upwards of 70 miles a day and I have 100 miles in my sights. I’m keeping my body running smoothly and am not letting Crohn’s take away my ability to be active. I like to say, and truly believe, that I have Crohn’s, but Crohn’s will never have me. By taking the big pivot and by refusing to give up on the life I want to live, I’m fighting my disease and fighting to be well!