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."
