Tuesday, March 24, 2009

Freedom Is Just Another Word

Well, as of tonight, I am officially, 100%, totally free.

Yep. I officially have no more port access, no more IVs to infuse, no more home healthcare company to deal with, and no more ridiculous medication schedule to adhere to. OK, fine, so my medication schedule is still a *tiny bit* ridiculous, but no more so than any other normal, healthy, fabulous cystic!

And it feels absolutely amazing.

I didn't think this whole "IVs for 6 weeks" plan would be too bad, and honestly I guess I have to admit that it really wasn't. Aside for the whole gravity drip snafu, the frustrations of dealing with the home health nurses, and the bum deal of being on an ineffective drug for nearly half the time, it could have been a lot worse. But let's face it, that's not saying a whole lot. By the end of this thing (i.e., tonight) I was literally going crazy! And to all those amazing CFers out there who have endured months or even years of constant IV abx, you are all my new heroes. Seriously, well done to you!

Unrelated sidenote: I've started jotting down my meds, exercise routine, communications with my doctor, and recorded HR/O2 levels in a little notebook I bought. Sort of like a daily medical journal, and I also make a note of how many hours I slept and any other pertinent information (e.g., worked until 10 pm, just as a random example). Yes, I do realize that is totally OCD and crazy on my part, but the thing is, I've been getting sick lately a LOT and I wanted to just try tracking everything health related for a little while to see if I can notice any patterns. At the very least, it holds me accountable in a weird way, because if I decide to skip exercise or a neb treatment one day for any reason, or totally blow off sleeping, then I have to write it down and actually fess up to it later. But mostly I'm not doing this to scold myself (or even to reward myself, though that would be more fun) - it's really just so that if I get sick again less than a month out like I have the last couple of times I can look back and try to see when it started and if there's anything that might have triggered it. And maybe in 6 months I'll have enough information to be able to make some important adjustments and stop this crappy cycle.

Or I'll just have a really creepy health journal. Either way.


  1. journals are a fabulous idea for your health stuff. i dig it :)

  2. Piper that is an absolutely FABULOUS idea. Great job! Especially with you being very observant and thorough type person it seems you are I bet those details and or triggers will jump off the page at you once you have data in hand.


    congrats on IV's btw YOU are my new hero I whine if I get extended to 3 weeks, I will remember your analysis of the situation next time.

  3. Here is the question??? HOW DO YOU FEEL lungwise :) Fabulous?!?!?!?!?! FEV1 up?????

    So glad you are off!!!

    I did the journal for 2 weeks tracking my O2 and HR and what I was doing along with fevers and all I realized was I am in the beginnings of an exacerbation LOL. I tried the exercise chart, by printing out calendars and then when I ran out of calendars I some how stopped exercising LOL


  4. Congrats on getting off of the IV's!!!! I absolutely hate home healthcare and I remember being so frustrated by it.

    I think a journal is such a great idea. Like you said, it will hold you accountable and you can see what you have done on previous days on days you feel real good and just keep that up (If that run-on made any sense.

    Have a great day!


  5. Journaling is great. You are right... it's a way to hold yourself accountable.

    I'm so glad you are finished.. yay!!! I hope you are feeling better.

  6. Horray for not more accessed port! Horray for showers without port being accessed!

  7. I started keeping a medical journal some time ago, but my motivation was the whole reward scheme you mentioned, hehe. I like checking things off my list - it makes me feel like I've accomplished something and motivates me to keep at it. The fact that I now have a log of what I'm doing (or not doing, as the case may be) turned out to have the very beneficial side-effect of being able to track back to when I started getting sick and what I was or wasn't doing.

    It's also good to take to the doc - for me it's a defense mechanism: "SEE? I HAVE been being compliant dammit!!" (Because I find that most health care professionals like to blame the patient when exacerbations start happening more often than they should.)

    I'm glad you're getting sober - no more needles young lady!! hehe ;-)