Positivity
People keep saying "oh you're so optimistic" or "you're amazing" and things along that line…"Inspiring" I don't know, I guess I have never seen myself that way. I realize now that yes, I do have a really good attitude about everything. It flatters me, but sometimes I feel like because that's how they see me, that I have to always be that way. Of course I have those days that are hard and I just can't be bothered to try hard. I always do, ...
My Parents & Guilt
Sometimes I get this thought that I can't shake. I feel like the people who actually have CF have it easy. Yeah, CF sucks but I mean, I was born with it. I have had it my whole life, and it's not something I've had to get used to. It's just what I have known forever. What I am saying is, my parents lived their whole lives as normal people. They got up, got dressed, went to work, came home, ate, went to bed. They had a routine. Then one day ...
Looks Can Be Deceiving
A lot of people say, "oh you look better today," and "but you don't look sick." No! Stop it! I can look fine, but not feel fine. I can look better one day, and feel completely worse. That's the problem with CF, you can look normal but feel close to death. I personally think that Eva Markvoort said it the best in her video titled "Nights Like These" when she was talking about getting ready for a party. Here are her exact words. "I'm having ...
Crazy Admission
So, I haven't really posted in a while, but some crazy stuff has been going on. Saturday morning I woke up and my lips were a little blue. The day before I had really been struggling to breathe and function. The blue lips were like the last straw, so I huffed and puffed my way to the ER. Apon arrival to the ER my dad went to park the car and I squatted down outside with my oxygen tank. A woman came out and wouldn't let me stay to wait for my ...
Transplant
Transplant is a touchy subject for everyone involved. Families may not want bits and pieces of their loved one shipped off to who knows where. A dying person in need of an organ may not want to take one, even though most likely their entire family is wishing that they choose to live. The thing is, though, it's not choosing to live or die, it's choosing how you live and die. If a doctor told you that you needed a heart transplant, or you would ...
PFTs
Everyone with CF has a different experience. It is a very individualized and isolated disease. Most people are diagnosed at birth or in their first year of life. When I was born it wasn’t always something they checked for, so I was diagnosed at four years old. CF is very individualized. An example of that is someone with CF who is twenty years old and still is pretty healthy, but then there could be a nine year old who is near death. There ...
Dedication: John Teufel
CF patients aren’t really supposed to be around each other because we can give each other bugs that cause infections, so I haven’t really been allowed to meet many other CF patients. In my hospital all of the CF patients stay in the same section of the hospital. Advances in social media make it pretty easy to become friends with other patients when they are admitted at the same time. Naturally we make friends with each other because the ...
Hello World
Hello, my name is Elizabeth and I have Cystic Fibrosis (CF). CF is a genetic lung disease that causes the mucus that lines the lungs to become very thick and sticky so it traps in bacteria that cause infections, and basically drowns you very slowly. If you’re reading this you have obviously stumbled upon my website. The reason I have this website is so I can share my experience as a CF patient through social media. I want to spread awareness. ...