Trigger & Content Warnings: seizures, loss of consciousness, medical trauma, provider neglect and avoidance, medication side effects, appetite loss, insomnia, grief and pet loss, depression, anxiety about mortality, hospitals, chronic illness fatigue.
Welcome Back to the Cryptid’s Den
Welcome back to The Crippled Cryptid, where disability, chronic illness, service dogs, and everyday sorcery all gather under the same soft lamp like friendly ghosts trading stories.
If you’re new here:
Hi. I’m Sky.
Professional cryptid.
Unwilling amateur cyborg.
Medically interesting enough to make half my providers sigh dramatically when they open my chart.
I live in a haunted meat-suit with a deeply questionable warranty.
If you’re returning:
Welcome home.
If you’re new-new:
Welcome to the Lunatic Café.
Pull up a chair, grab a drink (lately it’s coffee with Trader Joe’s salted maple cold foam), and settle in. Things are… lively.
And I do mean wake the dead lively.
Saturday Updates (Written between Monday and Friday Because Time Is Fake)
On Saturdays, I try to keep you all updated on my health.
I say try loosely.
Lately, my body has been flinging curveballs like it’s trying out for a professional league. The seizures that started on December 2nd haven’t exactly taken the hint to leave, with the most recent one happening in my own home on the 12th.
That one was scary. No jokes. No clever metaphors. Just scary.
I’ve shared bits and pieces of this already, but there’s a chunk you haven’t heard yet. Mostly because every time I sit down to write, my body files a formal objection.
Cardiology: The Exception, Not the Rule
Last week, I saw a cardiologist. This was supposed to be part of a tidy little Saturday update before my body reminded me that control is fictional.
Short version: he doesn’t know why I’m blacking out. He also can’t explain the seizures but, that isn’t his department.
Longer version: it might be POTS-related, but he’s also not accustomed to patients who arrive with a condition sampler platter and receipts. He did, however, laugh when I called it the alphabet soup of conditions that no one wanted. He got brownie points for that.
And here’s the thing that shouldn’t be remarkable but absolutely is.
He was competent.
He walked in, introduced himself to both M&M and me, and immediately disproved the Yelp horror stories. Friendly. Funny. Efficient. Prepared.
He answered questions before I asked them. The ones I did ask got real explanations. Not rushed. Not patronizing. Actual information.
He explained the PET scan. He explained the take-home heart monitor, and how we’d work around my MCAS, which treats adhesives like a personal attack.
When he didn’t know something, he admitted it. Without ego. Without defensiveness.
He committed to researching my conditions and getting me through the 5-day heart monitor, PET scan, and EMG safely before my follow-up in March.
I wasn’t dismissed.
I wasn’t minimized.
I wasn’t treated like a burden.
Which says less about him being extraordinary and more about how low the bar usually is.
He also removed another tilt table test from the plan after hearing how badly the first one went.
That shouldn’t feel like a gift.
But here we are.
Neurosurgery: Silence Is an Answer
The neurosurgeon my pain management doctor referred me to?
As of December 15th, at the time of writing this, has not called.
Nor has his office returned my calls.
At some point, silence stops being an oversight and starts being a message.
And let’s be very clear here: complex patients do not get ignored by accident.
We get ignored because we are inconvenient. Because we require follow-up. Because our charts are long, our histories are messy, and our needs don’t fit neatly into fifteen-minute appointment slots.
Avoidance isn’t neutral. Silence is not harmless.
If you’re a provider reading this, understand something clearly: avoidance is a decision.
And right now, it’s one that leaves me without answers, without continuity of care, and without trust.
It doesn’t just delay treatment.
It tells patients exactly how disposable they are.
Neurology: Answers I Didn’t Want
I did see the neurologist today. (December 15th)
He’s not avoiding me, thankfully.
I just didn’t like what he had to say.
I’m on Keppra. For good. Or at least for now.
Yes, I know it’s for my own good.
Yes, I understand why.
I still hate it.
The side effects are… loud.
I’m exhausted in a way that makes existing feel optional. I don’t want to do anything. Which is becoming a problem because the Yard Yeti has decided this means he must supervise my kitchen usage.
He does not cook.
Last night, while I was making a béchamel for mac and cheese, he stood near the stairs asking if I was dizzy and if I was “allowed” to be there. Using a stove. Out of my bed.
Sir.
You are my younger brother.
You do not know how to cook.
Please stand down.
The Holidays, Grief, and the Fear Everyone Pretends Isn’t There
Here’s where the softness burns off.
It’s the holidays.
And it’s our first Christmas without Bear.
If you’re new here, Bear wasn’t “just a dog.” He was twelve years of presence. A warm, stubborn constant. A witness to everything my body has survived. He filled rooms by simply existing in them.
Now there’s a Bear-shaped absence everywhere.
Everyone in this house is grieving him. Quietly. Loudly. Sideways. There’s no right way to mourn a soul that large.
So yes, it hurts extra to be down and out right now.
It hurts to be medicated into exhaustion. To be benched by my own nervous system. To be told to rest while grief and time keep moving without me.
I don’t just feel sad.
I feel useless.
I feel worthless.
Like I’m failing at the one thing I’m supposed to do during the holidays, which is be here. Be present. Make memories. Hold space.
And if you’re chronically ill, you already know the thought that slithers in next.
What if this is the last year?
What if this is the version of me they remember?
The one who was always asleep. Always sick. Always missing.
Decorating was hard, not just because he wasn’t here but because my body wouldn’t quiet down.
I don’t want Bear’s first absence to be paired with memories of me disappearing too.
Appetite: Missing, Presumed Gone
Keppra has also decided food is optional.
Not the homemade mac and cheese.
Not the Pizza Hut the Yard Yeti ordered when he was worried I’d try to cook fresh out of the hospital.
Nothing.
Sometimes I crave coffee or plain potato chips. By the time they’re in my hands, the craving is gone.
I want sleep. Except I can’t sleep.
I’m uncomfortable. I’m having vivid nightmares. I wake up constantly, rolling over to check the clock like it might explain itself. It never does.
And when I do sleep, I wake up groggy. Exhausted, head and heart pounding like I’ve just rolled from one nightmare into the next.
What’s Next: EEG Edition
The neurologist wants an EEG.
Three days.
Electrodes on my head.
No doing anything.
And the idea of electro-goo on my head? Questionable at best, especially if you know how much I value my long, purple hair. No, it isn’t natural. Yes, it would probably be easier to maintain if it was but, some things I have to do for me. $11 of hair dye every 6-months is one of those little things.
We don’t have dates yet, and I’m hoping it’s after the holidays because I truly don’t have the bandwidth for that right now.
Mostly, I just want my body to stop feeling like it’s betraying me.
Luna, Carrying What My Body Won’t
If this post has a constant, it’s Luna.
She’s alerting constantly. Dizzy spells. Position changes. Bathroom trips.
Every time I stand up, she’s already clocked the risk.
She insists on accompanying me everywhere, including the bathroom, and has informed M&M of this policy.
At night, she lays across my legs, wakes me from nightmares, and does DPT like it’s oxygen.
Because for me, it is.
This isn’t affection.
This is trained, relentless, life-preserving labor.
Service dogs deserve real benefits.
Healthcare. PTO. A retirement plan.
At the very least, more than pizza crusts and peanut butter pies from our favorite local barkery, Reese’s Barkery in McHenry.
But for now, she’ll accept the treats because she loves them, and me.
Luna is my lifeline.
Not in a metaphorical “I love my dog” way.
In a very real, very literal way.
She keeps me safe. Grounded. Here.
Without Luna, M&M, the Yard Yeti, and my aunt in Texas, I don’t know if I’d still be here.
We absolutely need more Luna appreciation posts.
Lanterns in the Dark
Written from inside my Nightmare Before Christmas onesie, coffee in hand, Luna curled at my side.
I leave this here as a record.
A guide.
A lantern for anyone walking these same shadows.
© The Crippled Cryptid
Disability, honesty, and a little chaos.
https://linktr.ee/skylanarissa
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