Saturday Health Updates | Seizures, EEG Wires & Another Hospital Trip
Content Note
This post discusses chronic illness, seizures, medical trauma, hospital settings, difficult medical interactions, and the emotional weight of navigating healthcare while disabled.
Please read gently. Skipping a post here is always allowed.
Welcome to The Crippled Cryptid: Saturday Health Updates.
These posts talk openly about chronic illness, disability, hospital visits, symptoms, and the reality of living in a body that doesn’t always cooperate. Some weeks are reflective. Some weeks are heavier.
Check in with yourself first.
If you’re new here, hi. I’m Sky.
Professional cryptid.
Unwilling amateur cyborg.
Occasional disability advocate.
Medically complex enough to make my chart look like a horror anthology.
Most days are lived in a haunted meat suit with a questionable warranty and a long-standing feud with my nervous system. I spend a lot of time in Bed Jail™, but I’m rarely alone thanks to Luna, my medical alert service dog.
Guardian. Enforcer. Tiny chaos gremlin with a medical degree she absolutely gave herself.
She’s the voice that says, “Hey. Sit down.”
And when I ignore her, she upgrades to, “Mumther, we are not negotiating with your bad decisions today.”
There’s also M&M.
My Player 2. My soft place to land. The one who shows up with ginger ale, soup, and quiet strength when my body decides to startle everyone. She gives the 90% when I only have 10%, and she reminds me that survival is still a team effort.
This space is for chronic illness without inspiration porn.
Disability without apologies.
Honesty without pretending it’s always neat or hopeful or easy.
There will probably be dog hair involved. It’s good for morale.
If you’ve been here before, welcome back.
If you’re new, take a breath. You don’t have to prove anything to exist here.
On Today’s Health Update: Cyborg 2.0
I’m laughing because if I don’t, I think I might cry.
The week started quietly.
Too quietly. The kind of quiet that usually means something is winding up behind the scenes.
Monday was blah, I was finally getting over the cold that had been sticking around since last week.
Tuesday was better. My older brother Matt came over for game night with the Yard Yeti, and I decided to finally give him a nickname here on the blog. I figured since Luna has decided that he isn’t evil, we’ll call him The Compass. Because we reward family members that show up for us with recognition, as we should.
Wednesday: Ambulances and Italian Wedding Soup Dreams
I had to go out by myself. No M&M. No Luna. You already know that wasn’t ideal.
The first Uber was great. Good music. Kind driver.
The kind who helped me into the Uber, put the rollator in the back for me. He even hummed along to Hotel California.
Everything normal… until it wasn’t.
I remember checking my Apple Watch. Heart rate 146. No reason for it.
And then nothing.
I had a three-minute seizure while I was out.
The next thing I remember was someone kneeling in front of me asking if I had anyone with me. I didn’t. She offered to ride with me in the ambulance because her granddaughter has epilepsy and she didn’t want me to be alone.
It reminded me that there are still good people left in the world. That alone made me want to cry, if we’re being honest.
There were cops. Paramedics. One of them remembered me from my first seizure back in December. He was kind. He was also training a new guy, which meant my alphabet soup of conditions became someone’s crash course in real time.
He told me about his dogs. Two Australian Cattle Dogs.
Obviously, that meant he heard all about Luna Bean.
Apparently at their firehouse they have to sing a song before they’re allowed to eat the lunch someone’s wife cooks. Homemade Italian wedding soup with mini meatballs. Honestly, I would’ve rather gone there.
Instead, I spent most of the day in the ER.
New nurses. Not my usual team.
Is it bad that I have a usual team at the ER? A group of nurses that I’m willing to ask for by name because they treat me like a person and not like a chart with a pulse. Or is there someone else out there like me in this respect? I’ve always wondered.
One interaction pushed me to ask for a supervisor when a nurse insisted on attempting an IV without the portable ultrasound despite my documented history. By that point I’d already been glucose tested twice and felt like absolute garbage.
Because that’s what happens after a seizure.
All of your muscles tense up and you feel like crap on a cracker.
The nurse who eventually placed the IV was incredible. She listened. She used paper tape. She didn’t treat me like a problem for needing accommodations written in my chart.
That kind of care matters more than people realize.
From late morning until about 3pm I sat in the ER alone. CT scan. Bloodwork. Viral panels. Everything came back “normal.”
But that’s the thing. They weren’t.
Because by the time the doctor came into the room, I was tired of waiting. Tired of listening to the machines beeping, and tired of waiting for answers. So, I’d opened the MyChart app on my phone and I checked to see if the results were in. They were. There were yellow boxes reading abnormal next to almost everything.
Funny how quickly the room gets quiet when patients know how to read their own labs and you call doctors out on it. They dislike it when you make them look stupid.
I went home exhausted.
M&M greeted me in the driveway when the Uber pulled in.
She had coffee waiting. Caramel overload grogg in my favorite mug.
She carried my backpack. Made me change into pajamas. Brought chicken soup, then a PB&J when that wasn’t enough.
We watched shows until I fell asleep mid-episode.
I tried to deny it. But the Apple Watch had already snitched on me. I’d had less than 2.5 hours of sleep the night before, and I needed the rest. So while we waited for Instacart, we napped.
When we got up, I was lucky enough to get a call from Aunt Lise while I ate more soup, and then we watched a movie to unwind. One that I cannot wait to do a Bed Jail Broadcast about.
Thursday: Quiet Recovery
We slept in after barely sleeping the night before.
We played MonopolyGo. New pet event. I picked the dog token on my phone. He has a scarf and a cowboy hat. On my iPad I took the cat, who currently has a silly feathered hat and a necktie.
M&M’s cat has a witch hat and I’m still jealous. Her dog has glasses. I’m jealous of that too.
Nothing dramatic. Just recovery, ginger ale, and some TV shows.
And honestly, those quiet days are sacred.
Friday: The Plot Leaves the Building
Friday was supposed to be simple.
The Yard Yeti shovels the driveway.
EEG tech arrives at the house.
We follow the plan.
Except at 1pm I got a text confirming the EEG… at the clinic. Not my home.
I did the reasonable thing. I called the office to find out what was going on to find out that they had changed the plan. Despite me having notes stating that it was supposed to be done at home, despite M&M being on the phone with me when scheduling to ensure that this would be done at home.
Forty-five minutes away.
$37 Uber.
$200 cancellation fee if I backed out.
Months to reschedule.
After Wednesday, I expected another battle.
So, I went.
The Uber driver was kind. We talked about faith, cars, dash cams, and life in a way that didn’t feel heavy or preachy. It reminded me a lot of Heretic, which I’ll be talking about in an upcoming Bed Jail Broadcast.
When I arrived, I was crabby. Snarky. Running on fumes.
Steven, the EEG tech, took it in stride.
They hadn’t warned him about my MCAS or anything else. He just got me as I was. And instead of pushing through, he gave me autonomy. Real autonomy. The chance to say no.
We talked about Luna. Fallout. My purple hair, and what it meant to me. I told him that I didn’t want him to fuck up this test and make me bald like him. He laughed at that. Sugar gliders. Thanksgiving egg-stealing squirrels.
He turned what could’ve been a breaking point into something manageable.
Good medical staff changes everything.
I left with twenty-three rainbow leads glued to my head and a backpack of wires that I now carry everywhere. I can go nowhere without it. Not to pee, not to sleep, it is now my constant companion until 2pm on Monday afternoon.
Cyborg status officially upgraded.
Luna inspected the wire bundle like it personally offended her, then settled closer than usual once we got home, one eye open like she was monitoring the new equipment herself.
Bed Jail™ Forecast
The next few days are going to involve a lot of rest.
My MCAS as you know does not take kindly to adhesives, and we made that very clear to Steven. He was kind enough to give us his direct number and let us know that if it was causing too many issues that we could contact him, and get it taken off early if that’s what I needed. I appreciate him a lot.
The EEG camera stays on while I sleep because seizures don’t come with warning labels. Sleeping with wires and a mini-backpack feels like torture, but here we are.
So, I need your help.
Send me your movie and show recommendations. Any genre. Anything that makes you think.
We just finished Fallout.
We watched Heretic.
We watched The Watchers.
Your ghoul’s watchlist may already be twelve miles long, but what’s one more mile?
Lunatic Café Check-In
If something here hit close to home, you’re not alone.
If you stayed anyway, thank you.
Take your meds if it’s time.
Drink some water.
Eat something small, even if it’s just a few bites.
No gold stars required.
Just a reminder from one haunted meat suit to another.
Tonight it’s me, a tangle of EEG wires, Luna keeping watch from the foot of the bed, and the quiet kind of survival that doesn’t need witnesses to count.
-Sky
© The Crippled Cryptid
Disability. Honesty. Survival without the performance.
🔗 https://linktr.ee/skylanarissa
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If you want to support the long, unglamorous work of survival and mobility:
💜 https://www.gofundme.com/f/support-skys-journey-to-health-and-mobility
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