Thursday, June 18, 2009

The (Not So) Little Post that Wasn't

I just want to make something absolutely perfectly clear:

This is NOT an angry post.

Okay, fine, so I'm back on IVs again for a couple of weeks and sure, it's the fourth time this year. But hey, no problem, I'm not angry.

And of course being on IVs means I have an infection, which means I most definitely cannot go meet up with some awesome CF/post-tx people this weekend, even though I've had a standing invite and plan to do just that for a couple of months now. No biggie though . . . I'm not angry.

And you know, my transplant group has a few people who really like to complain about things like having to be on (gasp!) prednisone for a few weeks because of infection, or having to do TOBI every other month, or even having to walk on the treadmill ocassionally -- and they do so to the point where I'm starting to feel like I must be missing some sort of sympathy gene because I kind of want to turn to them and say "you know what, buddy, I get that it sucks. I get it because I've been on TOBI since it first came out (when I switched over from the original tobra mixture solution), and you know I also alternate it with another inhaled abx on the "off month" and several orals that I'm on all the time and I've been on prednisone non-stop since October and had IVs 6 times since then (with 3 hospitalizations). So don't look at me like I'm some sort of freak who doesn't understand your pain just because I'm not tethered to an O2 tank right now, because honestly I've had my f-ing lung disease SINCE I WAS BORN and I'm not actually the inexperienced one here. I promise."

So, um, yeah . . . I may not always be nice, but I'm also not angry. Really. Not at all.


Okay, so maybe I'm a little bit angry and frustrated right now. I've actually been avoiding blogging lately for a couple of reasons, the first being that it's been a little rough around here and I've been trying to sort it all out and desperately fighting to get back into the swing of my job. And the second being that I didn't really want to subject everyone out here to all my negative energy right now, because to be honest I've had quite a bit of it. I actually started scribbling down all my thoughts in one of those sketch book journals a couple of weeks ago and I've already filled 2/3 of it with pretty much everything weird and random floating through my mind right now about CF, life, and transplant. I'm thinking about calling it "Diary of a Mad Cystic Woman" (haha) and marketing it to some major movie studios . . . who thinks it would be a hit?

Honestly though, lung disease is incredibly frustrating. It's frustrating to get out of bed and ten minutes later feel your energy for the day already draining away. And it's frustrating to have to stop several times a day to "take stock" of how you feel (are you too tired? can you breathe? do you need an extra treatment? should you call your doctor?). It's frustrating to sometimes think about how little control we might actually have. And, above all, it's frustrating and heartbreakingly sad to watch others pass away or get sicker from your disease . . . people who deserve nothing but admiration for their fight and their strength in the face of what is, to be perfectly honest, an absolutely shitty situation.

One thing that is not advisable, however, is to let that frustration drive you into a frenzy. Because take it from me, it is NOT a good idea to spend your entire day thinking about all everything you SHOULD be doing: I should be eating again, it's been almost an hour; I should do another treatment; I should go to every single transplant education seminar and try to spend several hours a day researching supplements and somehow juggle my full-time job; I should quit even though it makes me happy and even my doctor now agrees that working is a positive force in my life, all things considered; I should exercise for 2 hours today instead of 1 and then I should drink 6 boost plusses right in a row to try and make up the extra calories and then fall asleep exhausted only to wake up 30 minutes later coughing and immediately vomit up what can only be described as a chocolate volcano of grossness.

Yeah, don't do that.

See, me and my 5 panic attacks and 2/3 of a journal full of crazy obsessive cystic ranting are here to tell you that when you go absolutely nuts trying to control your CF, your CF is likely to take control of you instead. Literally. And that, my friends, is the absolute worst side effect of lung disease ever. I'm not kidding.

So the good news is, I've moved from terrified/obsessed/manic to just a little bit angry and frustrated. And I think that pretty soon I'll be able to get back to my normal state, which is determined and cautiously optimistic. And while I still believe that I have a lot to prove, and I still want desperately to try and save these lungs as long as I can, but I'm also coming to accept that there is no such thing as the "perfect CFer," and if there is I can't be it anyway. Because I can't simultaneously leave my job that I love and went to 7 full years of college and grad school for AND say that CF isn't standing in the way of my dreams. I can't spend all day every day hooked up to my vest AND still have any sort of life at all. I can't keep pushing myself to exercise all the time AND follow the advice of my doctors, who say that I'm burning too many calories and pushing my HR up too high. And at the same time I can't work the crazy hours expected of NY lawyers AND keep up with my health. I can't go out and party all night with my other young city friends AND have the energy to move in the morning. I can't ignore my treatments or my routine just because I'm tired AND look myself in the mirror and say that I'm trying as hard as I can.

So in short, I can't please everyone, but I can make some smart choices and compromises and I can let myself admit that CF is not always all fun, games, and humerous blog posts.

And hopefully, after all that, I can actually regain a little of my sanity.


  1. Hey, Girl. I can't believe it's almost midnight and you posted this at 7ish and you don't have any comments yet. I'm just reading it now, and you know what? Get angry. There is a saying in feminist politics (not that this is a feminist blog-it, duh, has another theme), GET MAD AND STAY MAD. The idea is that a little madness is required to get the job done. You're getting the job done, staying healthy and fighting through the rough spots. And no you don't have to be in a good mood by tomorrow if you don't wake up that way. You do what you need to do and take out your anger on the treadmill while you're at it. Somedays you just have to tell CF to suck it. Good job doing so!

  2. I agree with Cystic Gal, Suck it CF!!!

    Good post. I'm glad I get to read you again.


  3. ...what she said!

    But seriously, glad to see you back in the blog-o-sphere, and please don't feel like you "shouldn't subject [us] to [your] negative energy" because, quite frankly, I'd think you were a bit naive and delusional if you *weren't* a little frustrated and angry. This is CF, raw and nasty and real as it is, and of all "places" your blog shouldn't have to be one more you feel like you have to put on a happy face and make everybody feel ok about everything. You are a marvelous, beautiful person who I've never even met and still admire deeply, and simply by getting up in the morning and working your way through the day, taking each decision as it comes, you're finding balance and absolutely "doing all you can", and that, to me, indeed does make you a "perfect CFer". I won't tell you to "focus on the positive" or "focus on today", because I think that's unfair bullshit to people as type-a and perfectionistic as we already are, but I will say that IIIIIIIII for one think you're one hell of an amazing woman! Hope you catch a break soon, girl - you deserve one!

  4. I'm hoping my post on my blog didn't make you angry....that was not my intention. Like you, it was just a ranting post of my frustration of steroids. The frustrating part is having a transplant, and not having to deal with "cf" things prior to transplant. That's not how it is supposed to work. I would never compare it or say it's worse that what you are going through right now. I've been there, done I definitely am not trying to shoot other CFer's problems down. I totally agree with everything you have said on this post. And agree that CF just takes complete control and you can't do anything about it. So i'm hoping you aren't angry with me!! I don't think there are any CFers that don't get angry with the's not normal to not get angry! I admire you for all that you have been able to do and accomplish. I'm praying that the IVS will work wonders this time....and you will get a break!

  5. Piper, sorry about everything going on. I was looking forward to meeting you this weekend. Hopefully the next get together you can join up and be in much better health.


  6. oh katey, no no no. i actually hadn't even read your post yet (i've been both a bad blogger and a bad blog reader!). my rant about people complaining were all pre-tx people, mostly with emphysema, and it wasn't a very nice thing of me to say anyway. i love your blog!

  7. Well crap you not going leaves me as the ONLY CFer with original lungs that will be there :)

    CF blows, plain and simple. I hope that the notebook is helping. You know I am here for you if you ever need to vent and I promise not to give you any stupid silly advice :D

    Love ya girl!!!!!!!!!!!!!

  8. hugs to you! <3

    i'm so glad you're writing about this.

    it's scientifically proven that when women talk (or type), seratonin levels go up (i'm dead serious).

    take care.

    oh and why does your tx team care about tobi and steroids? i'm super confused.

  9. Piper, I'm glad to read your blog, attitude and all! Life isn't all roses, 65 roses or whatever! I think that the whole range of emotions are what really make us human. Plus reading about it, I can at least being to understand your frustration a little bit. Do what you need to do for you not because of any external expectations... and don't try to be super CFer either! It's OK to just get pissed some days! We're here and we'll read it with as much rapt attention as all your other blog posts. :) {{{{Hugs}}}}