A Life Regretless;

Today is August 3rd.

It marks the 16 year anniversary of my diagnosis with cystic fibrosis.

16 years of countless medications, pills, doctor's appointments, treatments & pain.

Thousands & thousands & thousands of simply everything.

15 or 16 picc lines, a few ER visits, a few hospital visits, a port-a-cath placement, CF related diabetes, millions of dollars raised, and too many, WAY too many dying/passed friends.

In 16 years, I've met amazing people dedicated to curing this disease.

I've gone on my dream vacation to Maui for Make@Wish.

I've been on the show 7th Heaven.

I've personally met Celine Dion.

I've met so many cysters & fibros who understand CF like I do; not as a simple medical definition, but as a demanding and draining lifestyle.

I've heard incredible speeches, & I'll be saying one myself this Saturday.

I've had my fair share of memorable experiences and none of them would've occurred if I didn't have cystic fibrosis. 

SO, in spite of how deeply I hate cystic fibrosis, HATE it with all the passion in my body, I cant still stand here and say that I am blessed. CF has shaped me into the person God meant for me to be. Sixteen years later~ I get it. I'm supposed to be this way. Cystic fibrosis is an external disease. It may damage my lungs, my sinuses, my pancreas, my stomach, my digestion, my breathing, my insulin levels, my liver, and pretty much everything else in my body (since everything is connected in some way or another). But there are some things it will never damage: the bonds I've made, the fulfilling live I've lived [SO FAR!] and the will in my body to fight harder than ever before. Oh, & of course, myhope.

16 years ago today, my parents received a phone call. They drove to the doctor, longing for some clarity as to why their infant was so sick, and they received it. Their daughter was now a part of a statistic, part of a 30,000 person rmy fighting this disease. They were scared. They didn't know what my life would hold; if I would be a skinny, barrell-chested young woman, if I would call the hospital my second home, if I would live a normal life, if I would even LIVE long enough to know what a normal life was life. Sixteen years later ~ I have cystic fibrosis. I fight every dat. I know pain, I know sadness, I have seen my friends die. But hell to the statistics. Hell to a median age of 37 years. I have cystic fibrosis, but cystic fibrosis will NEVER have me. 

I've lived with CF for 16 years now. But this is only the beginning.

RIP all of those who have lost their battle. YOU are my inspiration.

"You don't know how strong you are until being strong is the only choice you have." 

Carly Lindmeier

Every day, people make choices. What to eat? What to wear? What to watch? These choices make up our day, and they create the type of person we become. While these minuscule selections mean nothing in the long run, there are certain choices that stick with you for the rest of your life. These important choices change you, mold you into a different type of person, whether it be physically, mentally, spiritually, or a combination of the three. My life-altering choice was made in the fifth grade. But, before getting to it, it is crucial that I share some background information about myself.

For almost all of my elementary school years, I was embarrassed about my health. I didn’t want people to know why I was absent for doctor’s appointments, why I needed to take pills before lunch, or why I had an IV line in my arm when I had lung infections. I told only my closest friends; even then, the process made me scared out of my wits. My heart would race, and the same, generic words, “I have cystic fibrosis”, would stutter out through my lips. Cystic fibrosis was, to me, a huge secret.

It was the time of the year for the human body unit in fifth grade. Each student in my class of ten-year-old peers were required to chose an organ in the body for which they would research and write a report about. I chose the lungs, for obvious reasons. The date our reports were due, everybody was expected to be prepared for a mandatory presentation of just one section of their report. As my peers went up and presented, my name was nearing closer and closer on the teacher’s alphabetical list of kids. I took the time I had left, and considered which part of my report to present; should I tell about the main functions of the lungs, or should I explain how they worked? It then occurred to me: my introduction to my report explained why exactly I chose the lungs, which disclosed the fact that I have cystic fibrosis. Choosing to read my intro to the class would be a perfect opportunity to explain my condition to everyone, and it would make me less fearful in future circumstances.

My name was called, and I apprehensively got up from my seat and walked to the front of the room. I had maybe ten seconds to decide what part of my report I would read, and in the last split second, I chose to read my introduction and reveal exactly why I chose to use the lungs as my organ. I read and stuttered nervously, and my legs felt like they would give in at any moment. I felt awkward enunciating “cystic fibrosis” in front of everybody, because of the personal secrecy of the term. When I finished, my teacher, who was fully aware of my situation, complimented me on my bravery. It was, from that day on, that I made the life changing decision to embrace my condition.

Today, it is clear that I am not afraid to tell the world that I have cystic fibrosis. In fact, if it weren’t for that choice I made, this paper would not be written right now. CF is a huge part of my life, but I don’t use it as a crutch. I embrace the fact, and spread awareness so one day, a cure can be found. By doing this, I feel like I am giving back to the charities and foundations that are trying to make this happen for me and many others in my situation. This is thanks to the decision I made back in fifth grade, the decision that changed my life forever.