Breakfast After Dark 2020

My Journey So Far…

I was diagnosed with Crohn’s Disease in 2014 during first semester of my senior year of college. What should have been a year full of enjoying many ‘lasts’ and making plans for after graduation quickly turned to hospital stays, several rounds of medications, and me ultimately withdrawing from school and moving back home.

During my first hospitalization, I was in constant pain and unable to eat, resulting in me losing over 20lbs in about 2 weeks. In attempts to supplement nutrition, I was given a PICC line which later caused two blood clots—one in my arm and in my lung, something I still have to be cautious of today. I had multiple blood transfusions and was prescribed heavy doses of steroids (hello ‘moon face’) and Remicade infusions. As a result of the infusions much of my hair fell out, which as a 21 year-old college student that made the intense abdominal pain, multiple daily trips to the bathroom, and insomnia not seem so bad. It made what is often considered an invisible illness very apparent to others that something was ‘wrong’.

I returned to college for my final semester in January of 2015 with some freshly-purchased hair, where I battled multiple bouts of C. diff and was eventually hospitalized again—two weeks prior to graduation. I wrote papers from my hospital bed with IVs and monitors hooked to both arms, and once released, my family drove me back to school so I could finish taking my final exams. It truly ‘took a village’ that year to get me to graduation and I have many people I share that accomplishment with—we did it.

Today, I am excited to say I’ve been in remission for 5 years. Remicade infusions have truly changed my life and I know I’m one of the lucky ones. I may not experience the physical symptoms of Crohn’s Disease daily, but the idea that it could be a reality for me again is an ever-present toll on my mind. Crohn’s is more than abdominal pain and trips to the bathroom, its learning to manage your stress to keep symptoms at bay, its constant battles with insurance companies and medical offices, its navigating uncomfortable conversations about taboo subjects, and its dealing with secondary conditions that come with autoimmune disorders. This is my journey so far, and I know a cure will be a part of my journey that is to come.

What I’ve Learned…

• Relationships are everything. I’ve been fortunate enough to have an extremely strong support system of family and friends surrounding me and I am grateful for this every day.
• How to stand up for myself when it comes to my healthcare. It’s taken years, but I know what works for me and how to maintain and ultimately demand that.
• Humor can be the best medicine.
• Resilience. I know I’ll get through anything—because it’s the only choice I’ve got.
• Your wig won’t fly down the road like a giant tumbleweed when its windy—seriously, you’ll be fine.

What a Cure Would Mean…

A cure for Crohn’s Disease would mean freedom from some of the restrictions it has placed upon my life, an ability to throw caution a little more to the wind. In comparison, my journey with Crohn’s has been much easier than it has for others, as I’ve been able to avoid surgeries and have found a medication that has, so far, provided relief. A cure for others fighting this disease means they can enjoy time spent with family and friends without having to put on a brave face, or embark on their careers without worrying about how much sick time they may need to use. A cure means financial stability, increased mental wellness, and the ability to tackle those everyday tasks we often take for granted.

My goal is to bring awareness to the impact this disease has on patients and caregivers and to raise funds to help find a cure!