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.
- I am a 33-year-old wife, sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient (twice!), and dog owner living in Colorado's beautiful Mile High City. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with about 2,500,000 other remarkable people, share my disease with 70,000 other beautiful souls, share my life with some unbelievable family and friends, and share my apartment with one very handsome guy and one really fat mutt with a kick-butt personality. We make it work.
About This Blog:
This blog is about me, my life, my sometimes craziness, my disease, and my current journey as a double-lung transplant recipient. It's also a celebration of everyone out there with CF (and other chronic illnesses). It's for you, inspired by you, and dedicated to you -- the community that keeps me writing, living, and breathing.
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