Medicine is Made by Humans.

If you feel lost after recent test results, here’s what I want you to know:

To put it simply: last week was so hard.

I want to get back to posting here everyday because I write everyday (so why not, right?)… but the last couple weeks, it’s been nowhere close.

I’ve had meetings, health things, job things, driving all over the place, private dire times, public thankfully-positive times (job epiphanies and gifts… another opportunity with a callback and a self tape… and then: contrasting, legitimate deprivation).

I think since I’ve written since a young age and I write somewhat transparently, it probably gives the impression of being honest and about the best and the worst.

But I’d wager that a lot of people you know who express through any modality likely share honestly about what resides between? I know for me, “the worst” is still 100% sacred and only for a couple closest. Especially as time has gone on.

So I share honestly, yes. But many things have to stay private for those I love or even because of my own damage etc (sure you can relate).

Sharing about health- when I sometimes coyly do- is not sharing my worst.

I hate health, but if anyone thinks that’s worse that than worrying for your loved ones, safety, life stability or anything else that impacts the great many of the world… you know self absorbed people (lol). I kid, I kid (I don’t kid?)

Point: What you see anywhere is not what you get. But what people DO share - any person out there willing to do so- IS a privilege…

And I’m so grateful for the many writer’s or comedian or dancer souls I’m so lucky to glimpse each week

If you feel lost after recent test results, here’s what I want you to know:

Me too.

And, also: Science is not a perfect science.

We aren’t reminded of that enough. Science is communicated most often by humans, and humans are not omnipotent. We get sh*t wrong. And that’s an imperfect, important fact I wish we shared a hell of a lot more for all the aching humans in the world looking for and needing facts.

I’m sharing this because today I had a (routine and often annual) sedated procedure with my G and J feeding tubes, but I “awoke” to new CT scan results from a few days prior.

The reason my CF clinic helped me get a tube switch out and check in was in part because it’s good to do so in general (I’m the worst and only push myself to do so like once a year. Normally around when the internal balloon is deflating), and also…

Process of elimination.

I wanted to see if the pain thats been in my upper right abdomen for months now was something “structural”, like the G tube nearby getting lodged in an uncomfortable way or something. If it helps, then that’d be our easy answer.

So I did that today. And it IS an easy experience… but not for me, personally. And I’ll explain why in my next piece, if you can stand me. Right now though, I wanted to leave a piece of food for thought that might bring some peace of mind.

Over the winter, I had a few scans that were really concerning. They were weirding me out. New things were appearing that I didn’t know much about (I promise I’ll confirm what’s up once I know; The vagueness shall stop eventually), and I tried to advocate for myself. I asked for follow up scans, or pushed to have questions answers in a way I don’t normally. But the next time we did scans: Some of the concerning elements didn’t show up.

I felt relieved, though confused. I thickly gaslit myself late at night, just for Manningham fun. And I pressed forward with work and life, admonishing myself for listening too heavily to my “gut” and gumption.

Well, guess what? After I awoke from my “process of elimination” procedure today, I saw the notice of my new scan, and scanned it to realize…

The results had done the process of eliminating for me.

I’m waiting for my doctors to get bac with me on what’s ahead and next steps, but I’m empowered in a weird way to at least now that flukes happen… But gut instinct still matters. Our opinions and worries aren’t the whole picture… but they still matter. Especially when a picture itself isn’t always worth a thousand words.

The disappearing act was a one time fluke of imperfect science; Speedy radiology reading or technology that took a photo with the fallibility of all things on earth. But I believed that over all the other puzzle pieces pushing me to care about my own pain and pen-ultimates* too.

*I wanted to make that an additional pun on writing, but since “pen” is already in the word, it just looks I put an unnecessary hyphen in penultimate. That being said, this Deaf girl often thinks words as spelled a certain way because I say them that way. Like, PANultimate. Or, my mom used to tease me to stop saying “half” when I’m trying to “have” but I’ve never fully fixed that one I don’t think. Anyways. Whatever. Pretend that was clever.*

Let’s resume. Where were we. Oh yes:

“I believed that over all the other puzzle pieces pushing me to care about my own pain too.”

Response?

Don’t.

We have to believe in ourselves as much as possible. Because no matter what happens: Medicine is made by humans.

And we don’t know everything.

PART TWO.

More tomorrow!

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