The Girl with the CF Tattoo

My PFT’s (pulmonary function test) were good. 84%, just a little bit lower than last time I was there. The respiratory therapist said that they like anything above 80%, though, so I’m okay with that. I do miss being in the 90s, though. In October 2010, they were 95%. That was over a year ago, so I guess I can kiss the 90s goodbye and get used to the 80s.

I just hope I can keep my lungs above 80%. It’s not easy, but I’m determined. I plan to start exercising because it’s good for the lungs! :) Yay for healthy lungs!

The only negative thing I have to say so far about the day is that the people at the pharmacy are hateful and they can’t understand the way I talk. Apparently “Emily” sounds like “Amber Lee” when I say it… ? Well, whatever, I think my slight West Virginia accent is cute.

PFT’s start at 10:30. I AM SO READY. I hope they’re good. I’m actually doing my treatment right now, then I have to dry my hair and leave. No class for me today!

Hopefully, my appointments go well and the roads aren’t too bad. It should be a pretty good day.

fragile-structure:

I go out with guys but as soon as they find out what I have to deal with they run, it scares them and I don’t blame them but I wish I could just find someone who can accept 100% and don’t mind if everytime we go out I cough or that I have to take pills and do stuff that other girls don’t

 Don’t worry, someone out there will love you for who you are. If they’re worth your time at all, they will accept your condition and support you through the struggles that you have to go through! ^__^

As a Cystic Fibrosis patient, I can’t imagine why anyone in their right mind would smoke. I watch my lung function decline a little bit every year because my body doesn’t work right… and I also watch people in public breathe in toxins that destroy their naturally perfect lungs. Lungs that could breathe normally without IV medications and daily treatments. It’s beginning to be an obsession of mine, noticing the people that smoke.

I remember that while I was still at MSU in West Virginia, a girl came into class and laid her stuff down on the desk. I immediately recognized the disgusting smell of cigarette smoke on her clothes, and sure enough, she sat her lighter and half empty pack of cigarettes beside of her books. My first thought was “ew.” As always. But then I decided that she was still young enough to think that it made her look like a badass or whatever the reason is for smoking.

The smokers were a real treat at Disney World. There were designated smoking areas for them to flock to when they needed to feed their addictions, but they would never stay at them. And they always tend to gather around doorways, so when you walk out of a building, you have to walk through a fog of second hand smoke. My Grandma always taught me to hold my breath when I had to walk past them, but my lung capacity just isn’t what it used to be, so I always end up breathing it in.

I realize people have the right to smoke and it’s their decision and blah, blah, blah, but that doesn’t make it any less stupid.

Wow, I certainly agree. And in my case, they should add a severely enlarged spleen that makes the princess look enormous and not able to fit into pretty princess dresses or sit comfortably.

I was born on November the 24th, 1991 at precisely 6:26 AM, if I am not mistaken. I was born with a genetic disease called Cystic Fibrosis, which is a disease that affects my lungs, digestive system, and causes me to have liver disease as well as other complications. But here I am, 20 years later, doing very well. I am able to keep my lung functions at a good level by doing treatments twice daily, I only have stomach issues if I forget to take my Creon before a meal, and although I am being monitored by a transplant clinic, a liver transplant is not in the near future for me. It’s safe to say that life is pretty good.

I often wonder what it was like for my family (especially my mother) to learn that I was sick with a life threatening illness. I say especially my mother because it’s true… I was an accident. No one has ever said that to me, but my parents never married or even dated when I was a child. I kind of figured it out when I got older. It must have been a shock for her to learn that she was pregnant, even though she wasn’t a teenager or anything. She was a responsible adult; I just assume that it’s a shock for anyone, no matter what age. And then she finds out that her baby is sick with a disease without a cure. I can only imagine that it was scary for her, but I don’t know how everyone felt because no one talks about my illness in a negative way, and I’m happy and grateful for that.

And here I am, 20 years old today, fighting Cystic Fibrosis for two decades straight. The fears that my family members had when I was diagnosed do not matter now, because I know those fears have faded into hope for the future, like my fears have faded.

I am a survivor! Twenty years down, and even though some of that time was rough, here’s to another twenty… and then some. ;)