Tuesday, December 2, 2008

Good Things Come to Those Who Wait (It Out)

So apparently the old cliche is true b/c I had a doctor appointment today and my PFTs are back up in the 40s plus (and this is totally the best part) I ACTUALLY FEEL GOOD! Yay! I'm back at work, able to walk my dog, eating real meals, and most importantly just really happy and able to laugh again. It's kind of funny though - I always think that I do such a good job of hiding things when they get rough and sort of toughing it all out. Well, that may be sort of true, but the number of surprised comments I've gotten from coworkers about how "great" I look and sound since returning to work makes me think that I might not be putting on such an Oscar-worthy performance after all. Clearly there is a huge difference between the me I am when I'm healthy and the me I become when I'm sick, run-down, and discouraged. Frankly I think I'm okay with that. I'm human after all, and CF sucks.

Anyway, the other news is that I get to continue the IVs for another week at least. Next week I will meet with my doctor to see where we are and what to do next. That's not so bad though. Something about this last infection hit me hard and it's taken me a long time to turn the corner into feeling well again, whereas I normally start to feel better within days of starting IV abx. So I agree that it's better to play it safe and really knock this thing out right now. And like I said in my last post, the practical little day-to-day parts of CF I can handle. The IVs and the treatments and the pills...after 27 years, you get pretty darn good at just sucking it up and doing what needs to be done. It's just that I do all those treatments and meds to help me feel good and live my life, so when I'm doing it all and still can't seem to find my footing, well, that gets pretty lame pretty fast. So thanks to everyone who sent me encouraging messages, kind words, and good healing vibes! I definitely feel honored to have stumbled into such a tight-knit CF community.

Speaking of which, I was totally thrilled beyond words to receive a special blog award from one of my CF "Cysters" (who also happens to be an awesome post-tx inspiration). Thanks Heidi! Heidi was nominated for the award by yet another post-tx (times two!) superwoman, Christy. I'm so honored that she then decided to pass it on to me.

As per the rules, I now get to pass this on to 5 new people, so I thought I'd continue the continue the tradition and keep it "in the family" by passing this on to some really amazing Cystics and CF family members. All of these people I have been lucky enough to "meet" in the past year or so and all have profoundly touched my life with their kick-ass attitude towards a miserable disease and their willingness to share their journeys with the rest of us in the hopes of making the CF world of strict infection protocol and three-foot rules just a little less isolated.

1) Amy: What can I say besides this girl is awesome? Not only is she totally fearless about taking frankly terrifying elevator rides up to the Top of the Fog, but she's also hardcore enough to write honestly about the horrors of the CF barrel chest. And that just rocks my world.

2) Steph: I was sooo excited to come across this blog b/c I feel like she and I share so much in terms of experience. More than that though, it's rare that someone is willing to really open up to the world about scary things like transplant evaluations and the decision about whether to get listed (yikes) -- even rarer to do so with such grace and even a sense of humor.

3) Shannon: Her blog has the coolest name ever. She also writes more eloquently than anyone else I know about the struggles of coming to terms with CF as an adult. I'm not a huge comment
leaver on blogs, but I read this one all the time.

4) Tina: Simply put, the bravest and most honest blog I have ever read. And written by the wife of a CFer willing to put it all out there throughout her husband's illness, transpant eval, surgery, and now recovery (yay!).

5) Lisa: Continuing on the "kickass wives of cystics" theme - Lisa definitely meets all the criteria. I love how frank she is about sharing what it's like to be a partner of someone with CF. I also love that she worte an entire novel in the month of November!

There are so many other awesome CF blogs (and just blogs by cystics) out there, but the rules say pick 5. So here are the rules for the winners so that we can keep spreading the love:

1. Post the award on your blog
2. Link me for giving it to you
3. Link the originating post nominating you here
4. Pass the award on to 5 more deserving people
5. Post these rules for your recipients


  1. I'm so glad you are back to work and feeling good Piper! I guess you needed the break.
    Superwoman.. haha! NOT! I am all whiney about Prednisone. LOL.
    You have passed the award on to some very deserving, awesome people. Congrats to you and to everyone who received it.

  2. OH and WOHOO I am soooo glad you feel better!!!!!!!!! I hope this was the "bad" part of the winter season for you and you stay healthy all season!!!



  3. OMG, what a surprize Piper! I feel truly honored! Thank you! :)

    ps. I am so glad you're feeling better!!

  4. I am so glad you are feeling better! It must be in the air because I feel really good right now! I got to the Docs next week and am keeping my fingers crossed for a good appointment.

    Secondly, thank you for believing in my blog. I try to keep it as real as possible.

  5. I am so glad you are feeling better! I was getting so worried about you. I thought the blog award was so amazing, and you are an inspiration to me for working so hard at your career while managing your CF. You rock!! Glad you are on your way to feeling "normal"!