Friday, February 5, 2010

Get What You Need

I don't even know where to begin with getting back on track with this blog. I feel bad worrying people with lack of updates, but of course I'd imagined being able to come back with a bang -- some witty commentary on life or disease (or, even better, life WITH disease) that would leave everyone laughing, crying, or just shaking their heads at the wonder of it all. I had it all planned out in my mind, except, of course, for the actual words, which I figured would just flow like water as soon as I sat down and put pen to paper (er, finger to keyboard?). And let me just tell you all, readers, it was going to be great. I mean seriously, we're talking Pulitzer Prize for Best Writer of a CF Blog with a Not-So-Clever Pun in the Title -- they have a category for that, right?

But, to quote the Rolling Stones, "you can't always get what you want." So, instead, you're gonna get the truth.


See, the truth is that the past couple of weeks have been a little ridiculous. Oh wait, sorry, the real truth is that the past couple of weeks have been a LOT ridiculous. First of all because I had a CF exacerbation, as mentioned in the last post, and then because I went on IVs. Two IVs, to be exact: tobramyacin and merropenem.

If you have CF and are over the age of zero-to-very-young, most likely you've experienced antibiotics in some form, which means that you probably know that sometimes it's a toss up as to which is the lesser of two evils: the disease or the "cure." Because let's face it, a lot of the drugs we use to fight these infections are, well, evil. Brilliant, yes, but evil, and antibiotics (esp. in their hardcore, CF-dose IV form) are no exception to this rule. Hence the fact that the first few days of IVs are often likened to the feeling of, oh, say getting hit by a truck, or faceplanting into cement, or any number of other fun experiences that involve collision contact with really, really hard surfaces. In other words, IVs may be really helpful, but they're also really annoying.

I know what you're thinking: does she think I don't already know this stuff, or is she just going for the Pulitzer Prize for Best Writer of a really, really obvious CF Blog with a Not-So-Clever Pun in the Title?

The answer to that is neither (though if you know anyone offering out the latter prize, I'll be happy to accept!). See, turns out that while all IVs are annoying, they can sometimes be, well, a little more than that. And lately that's been the case more often than not for me, because unfortunately at my stage of CF and with my particular and individual presentation of this disease, I need to be on IVs pretty much more often than not. This is the arrangement that my pseudomonas/achrombacter has basically forced us into, and it seems to be working out except for one very minor detail:

The rest of my body.

Yeah, you know, the non-lung parts (also known as "all that other stuff" by us dedicated lungo-centrics). Apparently they have feelings too -- who knew? And those feelings are hurt by things like low potassium, vomiting, tachycardia, inflammation, and, well, you get the picture. When I say "hurt," by the way, I mean it literally. As I'm quickly learning, there is such a thing as serious pain associated with having severe-stage CF -- when people say that it's not BS, and they're not just whining.

It really hasn't been the greatest of weeks.

Obviously, I'm in pretty constant contact with my amazing doctor, and we're treating things as they come up. We've also switched my antibiotics around now because it seems pretty clear that at least some of the problems were stemming from a reaction to one of the drugs I was using -- it's not an allergy in the strict sense, and I think is probably just due to overuse. Like I mentioned, "all that other stuff" in my body is kind of acting on overdrive right now, because it's having to deal with the systemic effects of both chronic infection AND chronic aggressive treatment. Poor sucker doesn't stand a chance.

So it's day two of a new plan that now involves three IV antibiotics (but minus one particularly tough one for me) and some hardcore supplemental potassium. I already feel tons better, just after a full day, and I think things are definitely looking up. Which means that hopefully sometime in the near future I can get back to writing you all the more funny/entertaining/insightful posts that you want.

In the meantime, though, maybe we should all just try and get what we need.


  1. BOOM, BOOM, POW! Kick some infection butt girl! XOXO

    **DISCLAIMER: Yeah, I was listening to a little Black Eyed Peas today.

  2. I like this entry, but don't like that you've had pain and stupid infection crap going on. And yes, there is serious pain with chronic lung disease, I'm fighting myself all the time about taking painkillers. Hope these drugs do the trick.

  3. Hugs to you Piper. And positive vibes your way, to let this combo of meds to their job tackling the beasts of bugs and leave the rest of your body alone! It can really, really hurt

  4. Glad things are working and I hope you start feeling tons better. And prayers for the call I know you need :)

  5. I hope the new combo works cause I don't like my cyster from another mister to be in pain! Please keep us updated. We're all thinking about you :)


  6. Hi Piper,
    Here we are again, same place, same time. I just read you blog and questioned if I got up and wrote this in the middle of the night. Someone has a plan for us and they keep putting us in the same story, same chapter, same page. Can I reference this post so my readers can read it? You wrote what we are going through so well. You are in my thoughts daily!

  7. Piper, Thanks for the update. I wish I could just send a soothing, doesn't make your body hurt {{{hug}}} that would make it all better. I'm thinking of you. Thanks for the glimpse into your life with CF. ~Juliet

  8. Im sorry you are having a crappy couple of weeks! :(

    Hopefully the new abx help and you start feeling better soon.

  9. I kid you not, Piper. I am writing a story similar to this on my blog. When I post mine I will give you full credit for posting this story before me.

    It sucks when our bodies betray us. Everyone is so different in their physical manifestations of it. Sending all my peaceful and positive energy to you. Keep getting what you need and striving for what you want.


  10. I am sorry to hear you are in pain. I hope that your nutrition and other issues mellow out soon enough. You will be okay. Just stay strong, nap a lot, try to exercise, and know we bloggies love love love you, CG Beth Peters

  11. So it sounds like you can include me, along with CF Steph and Josh, in your list of people who are going through the same thing right about now. It's somewhat relieving, if that makes any sense at all, to know I am not alone enduring this all out body pissed-offedness - it's like my body is screaming at me, "NO MORE POISON, pleeeease!" and my lungs are sitting there smugly giving the rest of me the finger.

    Call me weak, but I am taking the pain medication. I'm glad your team is being proactive in working with you to address ALL of your issues and not just your lungs - I mean seriously, we give our lungs too much power as it is, LOL.

  12. been there and done that.

    no fun.

    really, really no fun. i hope you can end the meds soon -- i hate how those antibiotics make me feel. they are the worst, and i always felt crappy on them.

    feel better soon!