I’m In the Hospital Again

I can’t accept that chronic illness is… chronic

“‘Your heart, your art, & the way you see the world is so honest. i can't recall how we first connected—an instagram post years ago or something but i consider it such a privilege to be alive at the same time as you, to witness & experience & connect through your authenticity & truth.’ - THANK YOU to this supportive reader!

I think of supportive readers (those who subscribe) as friends helping support chapters in an ongoing book, and those who cannot [but read and share for free] as equally important Word Nerds alongside…

But if YOU hate getting tons of emails and don’t like being spammed (same-same), you can always do what a supportive reader did:

“I still have my yearly subscription, but unsubscribed from the emails. I just need to be able to do it on my own time“.

We both wish this space would give readers the option (“Do you want to get newsletters or do you want to access it on the app?”), but until it does: We make our own!

My goal will always be to work VERY hard for your monthly support and never take it for granted, so I write every weekday.

Here’s to another week together?”

I’m in the hospital again.

I honestly hate posting about it in real time (so I’ll be a few days behind my days)… But I have a major sickness that I can’t seem to cure:

I can’t accept that chronic illness is… chronic.

I read other writers sharing their stories and think how unfortunate their acute symptoms and forced trips to the ER are, and separate myself from it all entirely. As if I don’t also get the same (warranted and now appreciated), “Go to the ER” as everyone else.

I ran into a doctor (she might have been a nurse but I’m calling her doctor either way!), who recognized me from my writing and thanked me for making ‘the sharing’ more acceptable because she (yes, a whole damn doctor-type-person-who-wears-scrubs) has CF. And there we were: feet apart and both thanking each other for breaking stereotypes we’ve been told about… ourselves.

It’s hard to not believe what other people think about you.

(By the way, I swear I’m not name-dropping that someone in the wild recognized my daughter and I. I feel gross typing the word “recognized”… but it’s worth sharing because it shows how rarely we see someone else in similar shoes. Also, the aforementioned: You never know when you’re silly little ‘sharing’ is going to feel like something worthwhile to another.)

Anyways, I’m in the hospital for just a few days. Though, just a few weeks after the last few days. (More on why another time)

It’s really hard to have coherent writing when you’re incoherent and it’s really hard to feel human when you’re having negative reactions to medications needed for procedures… so posting at ALL right now feels terrifying because I feel half within myself. Still farmer-refuting that I need to learn how to be comfortable with a life where I accept help when I need it, and where I live ER-hell when I’m asked to, and yet… knowing I still can have a worthy life.

I can make and do and create things… and still be someone who needs hospitals in order to make and do and create things.

The fact I’m writing this on Day 3 of hospital doesn’t make being IN the hospital any less relevant. I’ll keep sharing… just in every direction.

Some of us choose to share once fully home, once our kids are safely with us, once we are slightly lucid, once all jinxing and tongue biting has passed…

Once we are farther than a few feet apart.

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I was not on planet earth yesterday.

To be honest, it was terrifying.

I’m writing this at 2:42 AM from a hospital bed, after 24-hours of hallucinating on some super natural cocktail after a procedure that I have never reacted to that way before.

I’ve had my feeding tube changed under sedation more times than I count (I normally push it off so it’s once a year at the most), and have never taken twilight sedation to the twimost level before (in layman’s: “tripping balls”).

This wasn’t just an ordinary tube change, by the way. I went to the ER after emailing my CF team to report a deep pain I was suffering in 2 parts of my stomach; 1 of which was near my J tube, which seemed to have deflated internally (‘twas sticking out) and was bleeding more than normal on the outside.