I got this from a girl who is doing a CF survey for her thesis. She's done with her thesis but I think I'll fill it out anyways. I will fill it out tomorrow/Thursday/whenever I get to it.
(Can you believe I got to it today, Wednesday!?!?! I sure can't!)
1) What do you know about Cystic Fibrosis?
Everything. Go ahead, test me. In a head-to-head match with my doctors, I could win. I know my CF stuff.
2) Do you think your doctors have helped you deal with Cystic Fibrosis? How have they helped?
Helped me deal with it? Probably not. If anyone has, it's Dr. Green, but only by keeping a positive attitude about the outlook on CF. I don't think a CF doctor can help a patient "deal" with the CF.
3) What do you think has gotten most in the way of your doing better?
Doctors. Yeah, seriously.
4) Are there things the doctors could have done to improve your care?
Listened to me. Dr. Green and my dad have been the only doctors that truly listened to me.
5) How do you feel about the way the doctors treat you?
They don't listen. Often I am a number, not a person. I am a medical subject, not a person.
6) Do you ever feel people treat you differently because of your condition?
Not since middle or high school. I think the majority of people have been wonderful to me. I love people.
7) How well do you think that you are able to take care of yourself?
Very well. And when I'm sick my parents help me.
8) What worries you the most about cystic fibrosis?
Losing the ability to do the things I love.
9) How does your cystic fibrosis affect you?
I have emotional issues because of it. I'm in therapy. I've had depression and anxiety and it's hard to know what was caused by being stalked and what was caused by my CF.
10) What do you hope will happen in your future?
I hope to live to about 30 before needing a transplant, and in that time I hope to raise awareness and money for CF and also help support groups get off the ground. I also want to get my book published.
These are more personal questions that were on the survey - but I'll answer the ones I find fitting.
What has been on your mind today?
Getting off the IVs!!! And all the little things that need to get done like dishes and phone calls and emails.
What do you enjoy doing?
Dancing, Watching movies, Traveling, Hanging out with friends, Working for CF, etc.
What really annoys you?
Doctors who don't listen.
How do you get along with different family members (mother/father/brother/sister)?
Mother: She takes care of me, and sometimes we don't get along.
Father: We always get along. He's the best.
Brother: We fought when we were young, but now we get along for the most part. He's a good kid.
What are your responsibilities at home?
I live by myself. I take care of everything and my CF.
Tell me about a friend/boyfriend/girlfriend.
My best friend since kindergarten has been Sarah. She's the best best friend a girl could ask for. I love her.
What would you change about the environment in which you live?
I would be married and I would have someone to take out the trash for me (not the only reason I'd want to be married btw.)
What is your school/work like?
I don't have one anymore.
Is there anything you’re looking forward to that’s going to happen in the next couple of weeks?
Hopefully planning a trip to Italy, studying Italian, and dancing :-)Oh! And going to see Avenue Q!!!!
What do you worry about?
Everything and nothing.