What is one thing that you are able to do / a skill you developed through having CF?
I have become very good at time management and, multi-tasking.
What is one thing you cannot do because of CF?
BABIES!! I will
What would a cure mean to you?
To me personally I don’t think it would mean anything. My lungs are too scarred to be reversed. However, a cure would mean saving many many children’s lives and that is much more important to me. I have lived a decent amount of time and I would rather see me die and a 3 year old continue to grow into an adult and realize their dreams. Not saying I want to die tomorrow but if I did at least I made it this far.
How has CF blessed your life?
CF has given me the opportunity to appreciate life fully. I find myself saying (when I am contemplating whether or not to do something) if it were to come up again next year would I be able to do it and if not then why not do it now. I didn’t start doing this until I was older but now I
What is your funniest/scariest/most interesting hospital or dr related CFer story?
I did a study back when I was 18 where they inserted a hollowed out flu virus into your lungs to see if your body could tolerate it. It was phase I trials I believe. Any-who…they knocked you out but you were still awake, just out of it. Well apparently I was talking through the whole procedure (amazing since I had a tube down my throat) and proceeded to tell the doctors and nurses all about Winnie the
What do you like most about yourself (non-CF related).
My ability to see both sides of an argument. Sometimes its good, sometimes its bad. If I am super passionate about something then I will ignore the other side but I can always see where the other person is coming from, even if I don’t agree with them. I have a hard time making decisions (bet you couldn’t tell LMAO), and constantly have to write out the good and bad for EVERYTHING.
I know you're creative and artistically talented. When you did realize it and what did you do as a kid to express it?
I have been drawing since I was able to hold a pencil. When I was 3 my mom entered me into a Disney contest for drawing Donald Duck and I WON! Looked pretty darn good too for a 3 year old! I was also creating “blueprints” and model homes when I was a kid. I would get white paper and draw a Floorplan of a home in blue marker. Or I remember I made a house and all its furnishings out of
What is the best thing you have learned or gained from meeting/talking to fellow CF'ers?
That I am not alone. For so many years I always felt isolated and alone because none of my family and friends could relate to how I was feeling. Then I met all these awesome people online and they opened my eyes to a whole new world. A world that I never knew existed. I am now more proactive with my health and actually understand what I am doing and why I need to do it. Prior to meeting everyone I just did everything my DR said blindly. Now I know why he prescribes what he does and I can ask questions. I don’t think I ever really asked questions of him before. I just sat there, gave him answers to his questions and was off. Amazing how knowledge can turn your life around. I may be sicker than I was then but I feel better about my life and more prepared for what will happen than I did before.
I now have friends that I can turn too when I am having a bad CF day and they will know EXACTLY what I am talking about. I can discuss hard end of life topics with my new friends and not worry about upsetting my RL friends and family. I feel much freer and more open about my CF than I have in years. Discussing it doesn’t seem inappropriate anymore.
Non CF wise...if you could have one wish, what would it be?
I want to visit all the places I have read about. All of Europe and parts of the
You say you just recently accepted what CF means to you. What event triggered this acceptance or was it just a gradual realization of what this disease involved?
Joing the online community was a big part in this. Before I was unaware of just how much this disease affected your body. I knew about it but never KNEW about it...if that makes sense. Once I started talking to other people with CF I knew that was I was experiencing was related to CF and not just some wacky other issue. It also meant that I could ask my DR about it and not feel like a fool. The reason that I decided to join the online community was because my boyfriend and I at the time were in a rough spot and that was triggered by CF. He wanted babies, I wanted babies but I wasn't sure about CF and babies. So I googled it and low and behold ended up on the evil cf forum - now moved to the better cf forum of course. But I needed information about women with CF having babies to prove to him I could reproduce. Needless to say I learned that having babies was not going to happen when I talked to my NP about it and found my FEV1 was a bit too low for their liking. I knew then that my perception of what CF was and how it affected me had changed. I talked to women that had babies and saw how difficult it was for some of them.