I’m angry, I’m hurt, and I feel justified in being all of those things.
And I’m going to let myself say that out loud.
⚠️ Content Note
This post discusses chronic illness, disability, medical trauma, surgical complications, medical negligence, seizures, and frustration with the healthcare system.
Please take care while reading and step away if needed.
Welcome to The Crippled Cryptid: Saturday Health Updates.
This is your gentle heads up before we begin.
These posts talk openly about chronic illness, disability, medical trauma, hospital visits, symptoms, and the unfiltered reality of living in a body that doesn’t always cooperate. Some weeks are soft reflections. Some weeks are heavy.
Please check in with yourself before reading and come back when you’re in the right headspace.
No one will ever judge you for skipping a post here.
If you’re new here, hi. I’m Sky.
Professional cryptid.
Unwilling amateur cyborg.
Occasional chronic illness and disability advocate.
Medically complex enough to make my chart look like a horror anthology.
I cope with sarcasm, stubborn hope, whatever snacks survived the week, and a concerning amount of coffee. (I’d ask you not to tell my cardiologist but, apparently, he doesn’t think POTS is a disability.)
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.”
And honestly? She’s right.
There’s also M&M.
My Player 2. My soft place to land.
She shows up with ginger ale, soup, and the kind of quiet strength that keeps the world from tipping sideways when my body decides to startle everyone. She gives the 90% when I only have 10%.
Survival, it turns out, is still sometimes a team effort.
This space is for:
Disability without apologies.
Chronic illness without inspiration porn.
Honesty without pretending it’s always neat or hopeful or easy.
There will probably be dog hair involved.
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.
Welcome to the Lunatic Café.
But I should warn you, lately, we’ve been using the word “fuck” quite often. Don’t worry. It’s medically necessary.
🩺 The DRG Saga Might Finally Be Ending
This is one of those posts where I don’t quite know how to start.
Which is almost funny, because for months now, I feel like all I’ve been doing is telling you this story in pieces.
On March 11, 2024, I was supposed to have my DRG stimulator (a nerve device implanted to manage chronic pain) fully removed.
It had been implanted in 2021. Revised less than eight months later when it stopped working. Burned me. Failed me.
I wanted it out.
The doctor who put it in said he was willing to remove it and replace it with a permanent pain pump. He was also filling my head with a lot of what a permanent pain pump wasn’t. So naturally, I got scared and left.
I found a different doctor willing to do the removal.
But what I didn’t know… was this: he didn’t remove all of it.
He left behind lead tips.
And he didn’t tell me.
What he did do was order an MRI in November of 2025, over a year after the “full removal,” after I’d been in a car accident and hurt my leg, knowing exactly what he’d left behind. The MRI tech found it in his notes.
And because of that, it made me MRI-incompatible. It made MRIs dangerous.
Thankfully, the MRI tech didn’t let me go through with the scan, even though at the time I didn’t understand why.
Not because I didn’t know MRIs were dangerous with implants.
But because I didn’t think anything was left behind.
I was told it was all removed.
And I believed my doctor.
Until she showed me his notes.
🧠 The Part That Still Doesn’t Sit Right
When I left that surgery, I was told everything went well.
M&M was told everything went well.
We were told I was safe.
That I could move forward.
That I could get MRIs if needed.
None of that was true.
Those retained fragments were documented in surgical notes… but never communicated to me.
Not until much later.
Not until after:
- A car accident in October 2025
- Seizures that came out of nowhere in December, stealing time and leaving confusion and fear in their wake
- An MRI being ordered
That’s when everything came to light.
They knew.
And I didn’t.
And even with the risks that come with ordering an MRI when there’s metal left in your body, they did it anyway.
⚡ Speculation, Anger, and Reality
I want to be careful here.
Because I don’t know intent.
But I do know this:
At my follow-up appointment, that same doctor tried to push a spinal cord stimulator (SCS).
And part of me can’t help but wonder if that was meant to cover the mistake.
Because if I had another implant, I wouldn’t be questioning what was left behind.
I wouldn’t be trying to get an MRI.
I wouldn’t know.
That’s speculation.
But the anger?
That part is real.
Especially because it wasn’t just a one-time suggestion.
It became every single appointment.
Try this. Try this. Try this.
It became deafening. Overwhelming. No matter how many times I said no.
No matter how many times my partner expressed concern. No matter how many times we said why.
No other treatments. No alternatives. No support.
Just the same push, over and over again.
I would drive 16.5 miles one way.
Thirty-five minutes in the car minimum.
Double it to get home.
Not counting the waiting room.
Not counting sitting alone in the exam room.
And then I’d leave 20 minutes later with nothing but the same conversation.
So, what would the point of an SCS be, if not to cover his own tracks?
Because it sure as fuck wasn’t for my own good.
🏥 The Next Step: Surgery
On April 1st, I met with the neurosurgeon.
Yes. April Fool’s Day. Because apparently the universe has a sense of humor.
He’s planning to perform foraminotomies to remove what is now officially classified as abandoned medical waste from my body.
Let that sink in.
We scheduled surgery for July 2nd.
If something sooner opens up, they’ll call.
And I have complicated feelings about that.
Really hard, really harsh, extremely complicated feelings.
Because on the outside, this looks like a good thing.
But from the inside, it feels like anything but.
🌱 The Bittersweet Middle
Waiting means I get time.
Time to maybe make it to the museum this year. The Pokémon Fossil Museum is coming to Chicago in May, and I promised M&M we’d go.
Time to make it to the zoo at least once, because last year it feels like all we did was stay inside.
Time to play with Luna before the opportunity is ripped from my hands, coldly and deliberately, because this is a surgery that will take months to recover from.
Time to be part of the garden.
To plant. To tend. To exist in something growing instead of something breaking.
Maybe even time to see the beginning of the harvest.
But it also means:
Surgery in the middle of summer.
Heat. Stitches. Pain. Recovery.
And the quiet, persistent knowledge that none of this should have been necessary in the first place.
🔥 The Anger (Because It Deserves Space)
I’m angry.
Because by the time this is resolved, I will have gone nearly a year without proper imaging.
Because MRIs aren’t just scans.
They’re answers.
They’re access.
They’re the difference between guessing and knowing.
And I have been stuck guessing.
Without answers.
Without appropriate care for my leg.
Without clarity on my seizures.
That says something.
And none of it reflects well on the system that allowed this to happen.
And to be clear, I’m not angry at the neurosurgeon.
He isn’t the one who put me in this position.
He’s the one trying to clean it up.
🌩️ Body, Weather, and Everything In Between
The weather has been all over the place lately, and my body has decided to match that energy.
Migraines. Pressure. Pain.
The thunderclap headaches have eased slightly this week, which is something I’m holding onto.
I hope it’s stress.
But I won’t know until the metal is out and I finally see my new neurologist in July, on the 23rd, the day after my post-op appointment.
If that isn’t irony, I’m not entirely sure what is.
Apparently, July is just… the boss level.
🌪️ A Small Real-Life Interruption
Last night, there was a tornado near us.
We’re okay.
No power loss. No damage.
Just a very spooked Luna Bean and M&M, and one cryptid sitting at the back table with coffee, trying to process everything at once.
☕ Right Now
So here I am.
Friday morning. Back table. Coffee in hand.
There’s a roast in the crockpot for tonight. Something warm. Something easy. Something that means I won’t have to spend energy tomorrow after the food bank.
Easter is coming.
M&M and I are making a 9.75 lb ham, mashed potatoes, maybe turning it into a movie night.
It’ll be small.
And honestly? I don’t mind that.
We’re not a particularly religious family. Spooky, yes. Religious? Not so much.
But this? This small, quiet moment before everything ramps up?
I wouldn’t trade it for anything.
Because even with months to prepare…
I don’t think anyone really gets used to the idea of being cut open because someone else made a mistake.
I don’t know what July will bring.
But I do know this:
I deserved better than this.
🐾 Luna Check-In
Luna has been on top of it lately.
More alerts. More insistence. Less tolerance for me trying to push through things I shouldn’t.
She’s been catching things before I even realize what’s happening.
Interrupting. Redirecting. Hovering just a little closer than usual.
And I think… she knows.
Or at the very least, she knows something isn’t right, and she’s adjusting accordingly.
Which means I’m being watched over.
Closely. Thoroughly.
With absolutely no regard for my stubbornness.
As always.
If something here hit close to home, you’re not alone.
If you stayed anyway, thank you.
You don’t have to earn your place here.
🖤 Lunatic Café Check-In
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.
-Sky
© The Crippled Cryptid
Disability. Honesty. Survival without the performance.
🔗 https://linktr.ee/skylanarissa
No pressure to donate. Reading, sharing, and existing alongside me is already enough.
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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