deltaF508

katiefielding:

You must check out these stunning photos. (via Children affected by cystic fibrosis – CNN Photos - CNN.com Blogs)

05/25/12

cfgirlflying:

Should not have tried that. Dumb idea.

It’s weird to think about this because I’ve never been able to breath “normal” so I have nothing to compare it to…

05/10/12

Interim phase 2 results VX-809/KALYDECO

pleasepassthesalt:

Woo-hoo! I wish they had any Texas locations for their trials.

05/7/12

CF Girl Problem

cfgirlflying:

Only have time to do makeup or do morning neb.
CF Girl Solution: Move the neb to in front of the mirror. Do both. I tried to take a picture, but that was asking too much.

I have mastered putting in contacts and doing make up while doing nebs! One should never have to choose a neb over makeup ;)

04/30/12

I feel as though I need to clarify something from my last post-

I was specifically referring to intentionally skipping enzymes. I understand forgetting and not wanting to take enzymes in front of friends and peers. I get that, I do. We all did it when we were young and I know I still forget now.

What I meant by that post was- people who skip their enzymes to lose weight or for any other intentional reason are dumb.

I know everyone is different- but I for one know that no amount of weight loss would be worth skipping enzymes for! When I skip my enzymes or take less than I need- the effects are dreadful and I wouldn’t wish that on anyone!

two hours in the gym every day > stomach pains from skipped enzymes

If I wasn’t harsh before- If you want to lose weight stop being lazy and inflicting pain on yourself/health and go to the gym.

#endrant

04/29/12

Skipping creon/enzymes is stupid.

I don’t care why. I don’t care if you only did it once.

If you intentionally skip your enzymes- you are dumb.

04/19/12

nightmare-on-teen-street:

My stomach gives me more trouble than my lungs, it’s upsetting because I love food more than air…

04/19/12

I recant my initial statement that Picc line scars are not cute.

I think they are, in fact, very cute. I’m luck that I only have two. They are tiny and adorable and you can barely see them!

04/10/12

Cystic Fibrosis and Crohn’s?

Does anyone have any information/personal experience/etc on having them both?

I have CF, always have, and am looking into the possibility that I may have crohn’s too? Any advice? How would I know? What is it like?

Feel free to write something in my ask! If it’s not anonymous I’ll answer privately.

04/9/12

Lately, I’ve been thinking.

townofclay:

I’ve been thinking about what people would say when I die. Not by suicide or an accident, simply because CF killed me, which it probably will, one day.

I realized one thing. People can say whatever they want, but never, ever, would I want to hear someone say things like “She has lost her battle against cystic fibrosis”. Because it wouldn’t be true.

None of us CFers has lost. Every single second we’ve lived is a battle we’ve won. Not winning the last one does not make me, or any of you, a loser. It simply makes us warriors.