update funsies
I haven't really been updating because the livejournal app on my phone hasn't been working very well and despite having a REALLY nice laptop (oh god, it's so nice) it has somehow been demoted from an awesome batch photo editor, to primarily a Sesame Street streaming device. Evan has a really nice iPad that he received as a christmas bonus from his employer, and I always joke around and refer to it as his Reddit machine since he just cruises Reddit for hours on end when he's tired. That too, has been converted to a Sesame Street machine.
Gone are the days of watching programming for big kids, or using cutting edge technology to play complicated games or edit photos and video. Yes... gone are those days. They have been replaced with Sesame Street.
Lots and lots of Sesame Street. It could be far worse, though. There is some shitty and weird kids' programming out there. Sesame Street has jokes that are aimed at adults at least. Here and there. The kinds that go over tiny kiddos' heads, which makes the jokes all the better.
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So anyway, I haven't been posting anything here. But I've wanted to. Because my health is kinda fucked up right now.
Oh man, guys. It has been such a shitty year for my health. I haven't lost much lung function wise, but my body is definitely starting to feel old and creaky. And it's fucking hard and ridiculous to keep my lung function where it's at.
I hate to say it, but holy shit I'm actually feeling disabled these days. That title has always felt weird to me but as of late it's applicable.
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I went in for PFT's yesterday (pulmonary function test, for the uninitiated) and the most important measurement was down over 10% from my baseline. And my baseline is down 6% from spring of last year.
Ugh. Writing that out gives me a pretty big case of the sads I'm so thankful my numbers were as high as they were to begin with.
Kids are hard, guys.
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So yesterday I went in for PFT's and in a few hours I have an important appointment with a CF doctor who makes me nervous. They always think I look great and my numbers are quite a few steps above dying, so they say things that make me feel like my concerns are unwarranted, and that I should be able to keep my shit together better than I am.
They make me feel like a harpy hypochondriac. But I'm not. And I'm not the only proactive, educated female that has run into this problem. It's like diagnostic overshadowing based off of the very basic gender diagnosis. I really hope I'm wrong about this, but the older I get the more legitimate these fears seem to be.
My worries seem especially accurate when I connect with a random female attending physician here and there; one who isn't part of the massive medical boys' club.
Anyway. Wish me luck. I'm nervous.