Wednesday, July 15, 2009

Q & A session answers

Ok here are the answers to the questions that you generously asked!!!
Thank you all so much for responding and I hope I was able to answer them throughly!!! Some really made me think! :)

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. College was a “breeze” when it came to managing my time and making sure I was able to get projects done and in when they were due. Learning to manage all of your treatments is a must early on so that you can still have some semblance of a life!

What is one thing you cannot do because of CF?

BABIES!! I will never have my own flesh and blood child. I have blogged quite a bit about this since it will be my biggest regret/disappointment in life.

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 wish I had begun many years ago. I used to just waste my time doing stupid things (like sitting in front of the TV for hours ignoring everyone else) when I could have been doing something much more worthwhile. I can’t change the past so I live now and do what I want when I want…as much as I can of course. I know that I don’t have to make myself sick trying to do everything and see everyone every weekend like I used to do. I relax and spend time with myself now.

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 Pooh and the Hundred Acre Woods! The one doctor was wearing a tie with Pooh on it and I just went with it. When I woke up in my room my mom told me the story and I was cracking up.

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 index cards one time. It has always been in my blood. A few years ago (ok maybe like 10) I found all my old art stuff from when I was a kid. I used to get markers and colored pencils and drawing paper for Christmas all the time. I loved it! A C Moore is still my favorite store but I have moved on to add more things into my creative realm.

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 US I haven’t been to yet. Being a Historical Fiction nut I read all about England, France and Italy way back when and I long to see the castles and homes of some of the people I read about. So that would be my wish, to travel all over Europe visiting every castle, farm and city I could possibly get to. Oh and not have to pay for it of course LOL!!!

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.


  1. Great post and great honest answers. Thank you Amy!!!


  2. Hey these were awesome. Such a peek into your world, thank you Amy. You are such a wonderful and important part of our lives. Oh and by the way when you come up to visit, although it is not Europe we do have some beautiful Castles and mansions that are open to the public....soooo we can check them out. I love you Ames.

  3. I'm *finally* reading your answers. ;) I enjoyed reading them. Nicely put.

    Now...I'm going to copy you. Lol.