Wednesday, November 5, 2008

Deep breaths...

I took someone very special to me out to dinner tonight for his birthday. We had been planning it for a while and I took him to a really cool authentic Japanese restaurant out here in NYC. You know, the kind of place where it takes a certain amount of courage to even order, but then you find yourself being pleasantly surprised? The food is awesome, and he loves Japanese so I thought it would be perfect.

Thought is the operative word there. I felt fine this afternoon...a little rundown but no big deal. Then I showered to get ready for dinner. Started coughing up tons of goopy junk. Gross. It got so bad I had to sit down in the shower to catch my breath. And it just kept coming and coming. My throat was on fire. I pulled myself out of the shower, made it to my bed, and proceded to spend the next 30 MINUTES just putting on jeans and a top. My hair was dripping wet, my dog was upset because something was so clearly bothering me, and I could not make it back to the bathroom without gasping. I tried to put on my O2 just to get ready and catch my breath, but honestly when I looked into the mirror and saw myself gasping, O2 canula on my face, wet hair hanging down, and now with less than 15 minutes before something I have been really looking forward to, well....I just sank down onto the bathroom floor in tears. Too much, too much. I feel like I can handle this disease most of the time, like I kind of have a grip on my own reality and have learned to excel while balancing my own needs and limitations. But seeing myself in that mirror was like looking at some sick stranger. I could not, for the life of me, connect myself with that gasping girl staring back at me.

I know most of you are waiting to hear about how I made the smart choice and curled up in bed, O2 safely on, to rest and relax my body. But I didn't. I picked myself off the floor, dried my hair, put on makeup, and went out to dinner anyway. And I tried desperately to seem okay, even at one point snapping at my wonderful companion when he asked if I was alright for the fifth time. I told him "How about I just tell you if I'm ever NOT alright, okay?" God, what a cruel thing to say to someone who was just trying to protect and help me. But I couldn't help it...all I could think about was that I had to push this CF aside, had to make it through this evening that I so wanted to make special.

Now that I'm back at home, I don't know that I regret going. I did what I did, and I'm sure in the long run going out and eating a good meal wasn't the worst thing I could do for myself. I even feel a little better now having moved some of the gunk around during the coughing. But I know something's not right, and I just hope that it's a one-time bad moment, brought on by too much excitement between halloween, the marathon, and the election. Maybe if I stay home tomorrow and really rest I'll feel better. Or maybe tomorrow I'll wake up feeling fine. CF is tricky like that.

What I do know is that tonight I was challenged by my disease. Challenged to confront my sick self and make a decision. And I made that decision, in the only way I knew how at the moment. But tomorrow, if challenged again, I hope that I'm strong enough to reach out and ask for help if I need it.


  1. *Hugs* to you Piper. Wow.. to pick yourself up off the floor and go out to eat anyway. I don't know if I could have done that. The ups and down of this disease are sometimes almost too much to bare, but yet, we keep on keeping on.
    I really do hope you wake up tomorrow feeling wonderful!! :)

  2. Hugs! This disease can be too much to bear at times. But we keep on going. We have to =]

    I hope you start feeling better!

    BTW I found your blog from Christy's. Not sure if I have left you a comment yet or not. Anyways my name is Aimee I am 23 and I also have CF.

  3. Wow! Every word you speak are my exact thoughts. I believe we have a lot in common when it comes to CF and life in general. I have been there and done exactly that. Please contact me by email at and let me know how you are dealing the transplant process. I have just finished my evaluation and know the decision to be actively listed is mine.

  4. The decsion to have a life or to do the "smart" health-conscious thing...ahhh one that I deal with every so often as well. For some reason I almost always choose the social life. Unless of course I am super worn out and struggling. We all have our breaking points! I hope you are feeling better!!! I am just finally catching up on blogs ahh!!