Wednesday, December 17, 2008

**Warning: Dangerous Roads Ahead**

I’m about to say something depressing. Be warned. This is not something I would even let myself think, much less say, on most days. It is definitely not the type of thing I would mention to my support system or my friends or any of the other wonderful people who work so hard to keep me healthy (both physically and mentally) every day of my life. This might not be the type of thing that parents of younger CFers want to read, or anyone for that matter, and so I want to give everyone the chance to get out now, before things get heavy. This is raw CF, pure and simple, and it isn’t pretty.

I honestly think my body is giving up.

No, wait, before anyone misreads that, I think my body as it stands now is starting to fail. I have NOT given up hope that things might be better in the future, I just honestly do not think my body is going to fully heal in its current state. This doesn’t mean that I think I’m a goner tomorrow, or in 6 months, or even in 6 years. It just means that I think my body has come as far as it can in actually fighting off this raging sea that is CF and that what I’m facing now is just a last-ditch effort to keep the flood down low enough to stay above water.

I feel as though mediocrity, even “bad”, has become my normal.

Today, for example, I wheezed my way through work. It hurt to stand, it hurt to breathe, and please don’t even ask about walking. I sat at my desk trying desperately not to need to go to the bathroom, just to avoid the pain associated with a short trek down the hallway. Don’t ask me why I feel this way, especially since I just got off IVs about a week ago. I think part of it, at least, is viral – a simple cold spiraled out of control in the way these things do for cystics – but I also feel legitimately like the past year has been a lesson in accepting defeat.

My health has become a comedy of errors.

I got some bad/weird medical news today, which is probably fueling some of this post. No, not CFRD-related, because I actually used the time between the two hours to see another doctor who conveniently works in the same building (gotta love the hospital network system). Anyway, I won’t go into details, and it’s probably going to turn out to be nothing, but the point is that when he told me a possibility that might have pierced my world a year ago, I can honestly say I felt very little. Actually, it was more than that: I felt slightly amused. Not really “funny” style amused, but more just roll your eyes style amused. My first thought was "wow, I can't tell anyone this, because it's just too crazy to even believe. People would start to think I was actually going insane." And then I did kind of chuckle, because with all the hubbabaloo out there about "cystic posers", I'm begining to think that most of us have stories that would make all of theirs sound downright believable.

I’m not beaten down, but I am in a corner.

Please don’t read this post as anything more than it is: the nighttime musings of a slightly overworked cystic. I’m tired, and I just wish more than anything that myself and everyone else who has this disease could catch a short break from the drama. I mean, in what playbook of life does it say that transplants and collapsed lungs and oxygen therapy should be de rigueur? THESE ARE HUGE DEALS! They are life-altering phenomena, and yet for me and some other people I know, they’re not. They’re run of the mill, casual topics for a lunchtime chat, nothing to get all that worked up about. It’s all so absurd when you take a step back from it: how much we put up with on a daily basis without even thinking it’s anything but ordinary.

I promise next time I write won’t be this much of a downer. To be honest, I’m already feeling like this post might come back to bite me in the ass – an embarrassing reminder of the things that sometimes run through my head when I’m really down and out. But it’s all real, it’s the skeleton in my closet, and that skeleton right now is wondering how she came to be as far gone as she is.


  1. It's all absurd Piper.. what we go through as Cfers. No one outside of our world, or the world of chronic illness, gets it, and no one should HAVE to get it.
    I have been where you are.. not exactly, b/c all of our experiences are different, but I have felt very similar to what you are feeling I think.
    Big hugs to you tonight.. big prayers to you. It really does suck to see my friends go through this. I wish I could give you a few wise words that would make everything better...

  2. I agree with Christy--CF is absurd. I sit an watch in amazement. I think that my husband is feeling a lot like you are about his body giving out. He is struggling. And I can totally get why. cheery advice, just stopping by to say that I read and hope things take an upswing!

  3. Aww Piper sorry your having a rough time. I have kinda felt like you do at the moment at one point too. Specially when there is a possiability of something else going wrong. It can be so frustrating.

    Hugs to you, and I hope you have a better day tomorrow!

  4. You have my number chica if you ever need to talk ;)


  5. I do agree that some of our stories would seem like total fiction to many. They just don't know, and never will know. That is why you have us fellow CFers to rant to. We've done it to, and we will listen.

    It definitly isn't funny, but sometimes it does seem as if a comedy of errors becomes your life. Sometimes laughing at it is the only thing that works.

    We are here for you!

    Hang in there!

  6. Hey Beautiful Girlie...

    I'm with Christy, Lisa, Courtney and Amy... But don't promise not to write "downer" posts now and then... The people who love you, and care about you, need to understand that there is often some pain and fear behind that consistant smile on your face...

    Like Christy and others - I understood exactly what you were talking about when you say you think your body is giving up... And I admire that you quickly doubled-back and made sure everyone knows YOU are not giving up -- and that you still have hope, because hope is so important...

    I've met so many CFers over the years -- and so many are dynamic, positive, loving people... And they are deeply loved by those surrounding them... I hope I live up to that standard -- I know you do...

    Piper -- I hope the rest of your journey is as amazing as mine has been... I was where you are between 12 and 9 years ago... It's not a comfortable place, and it's a scary place... But we can muster incredible strength in that place to get us through... I hope you are a candidate for lung transplant -- I hope you're listed soon and your wait is not long... And I hope your surgery and recovery goes smoothly...

    Because, HOLY CRAP Piper -- breathing with real lungs blows my freakin' mind every freakin' day... I lived 39 years with crappy CF lungs that, like yours, got worse every year -- but we just keep going -- we don't even truly realize how bad we have it until we get beautiful, new, pristine lungs... It's been almost 9 years for me and I think about this constantly -- I think about what it feels like to breathe "normally" throughout the day... The things I can do are amazing -- but the little things, like lasting the day at work -- walking home -- not spending hours and hours in health maintenance... It defies explanation...

    I was lucky enough to learn about the precious, young girl whose lungs I breathe with... I've hugged her family... Her friends and volleyball teammates are my friends now... Her name was Kari and she was 17, and she let her family know twice in the month before she passed how strongly she felt about organ donation... I think about her throughout the day, every day -- I can see her smile when I close my eyes...

    You take care, Piper -- you hang in there... After struggling 27 years with cystic fibrosis, I hope, very soon, you find out how amazing life can be...

    I have a tribute to my donor, and I blog about organ donation -- my websites are below... And in two weeks, I get to ride a float in the Rose Parade!!! Breathing doesn't get much better...



    Steve Ferkau
    Chicago, IL

  7. I don't need to say what's already been said, but I'm probably going to a little bit anyway. I want you to know, and really believe, that you don't always have to put on a happy face for us.

    I know the feelings you're describing (here's where I get repetitive). It's really difficult to stay positive when it feels like one step forward, two steps back all the time. We know mind and body are inextricably linked (omg, did I actually spell that right the first time?!), but that is why, when you're feeling down, you gotta get it out there - like you said, let yourself feel the frustration and sadness - so that you can begin to approach acceptance in such a way that it is without defeat.

    Okay, no more preaching. Thanks for your support - the comment you left on my blog was like the hug I really needed. I hope you can feel all of us hugging you, too.

  8. Just a lurker who thinks you're very brave.

  9. Piper, you may consider this entry raw and unpretty, but I appreciate your honesty.

  10. Medical conditions are just that, raw and unpretty at times. And with several different ways to tackle one scenario...hopefully. When you and your team get it right, it's beautiful. But the body does what it does, and any medical condition is a lifelong learning experience.

    Don't make any promises for a shiny happy next post. Completion and honesty make for the best, most therapeutic writing...for you, and the rest of us reading. Let your blog teach both you and us.


  11. My son once described it as being at the gym. You are up against that boxing bag and you punch and punch and punch and each time the bag keeps coming back. But you keep punching until you are tired.
    "I am tired, Mom"


  12. What a powerful post. As a CF mom, it is hard to read, just because those of us who love our "CFer" want something else for all of you. Thank you for being honest.