My Two Favorite Dorks

My Two Favorite Dorks

Sunday, November 3, 2013

For reals? This shit is gettin' old, yo.



I have spent the last two days feeling absolutely horrendously awful: body malaise or achiness to where it hurts to breath in deeply; weird muscle sensations when I stand up; no energy, sleeping a ton; not much appetite; low-grade fevers; brain of mush...it occurred to me that this might not be entirely different than what chemotherapy feels like. The toxic "cure."

Switching it up

Not feeling a huge difference after two weeks on IVs, we decided to switch things up from IV Mero to IV Tobra and Ceftaz (while also staying on Minocycline and switching from inhaled Tobi to inhaled Colistin). This is a combo I've been on before, but we decided to try doubling the dose of Ceftaz to see if it would make a difference. From what I gather, this high dose of Ceftaz is not something that is done very often. Sound familiar?

My body could certainly tell the difference pretty much after the first dose. It usually takes a few doses of antibiotic for me to start feeling crummy, but this time it happened right away.

Is it just me or did this happen fast?

It might just be me, but it seems like this antibiotic resistance thing, which theoretically should happen over a good amount of time, has happened very quickly. I have only had my port for a little over three years. When I got it, I was doing IVs about 2-3 times per year. I don't even know what I've averaged lately - though I know that there are times when I have gotten sick in the last couple of years that I have been really sick, like needing oxygen sick. In other words, the lows have been lower for sure.

Woo woo woo wants to be a sick person?

Not me! One of my biggest fears, you know, besides dying way too young, is falling more and more unavoidably into the category of 'sick person' as my disease progresses. Maybe it's the pity I don't want, or the worry I don't want people to have, or the fatigue that comes from putting on a happy face/explaining unpleasant things to people/trying to have a positive attitude...but it's also a fear of being seen as unreliable, the perpetual "penciled in plans" type of friend, the missing out on socializing when I shouldn't go out or don't have the energy, being gone so much from work that people start to question me or my contribution. And I don't know anyone who has looked forward to lugging oxygen around with all of the joys surrounding that.

Here is my take-away

This is what I believe, although it becomes harder and harder to follow as my health deteriorates: no matter what the reality is, you always have a choice about how to view your situation. If your FEV1 is 50% or 15%, you can choose how you live each day - what you do, how you tell your story, the people you surround yourself with and let yourself be supported by, how you take care of yourself, the pity you evoke or brush aside.

I said to Todd the other day: I feel like all of my work the last few years has been to avoid this - and now that I'm here, I just don't have the energy to deal with it. That might have been depression speaking, but it was truly how I felt after getting out of the hospital last week.

But what is left except to live life? It isn't going away, not yet. And so these choices again come into play: I have to get up, brush the dirt off my pants and get back to work. It ain't easy, and it sure as hell is getting old, but at least I have some great people supporting me along the way. It really does make a huge difference.

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