Content Notes: seizures (non-graphic), medical gaslighting, medical trauma, discussions of surgery, emotional distress.
Please take care of yourself while reading.
Welcome back to the Cryptid’s Den.
This is The Crippled Cryptid.
A soft-lit corner of the internet where disability, chronic illness, service dogs, and everyday survival magic gather like familiar spirits who know when to sit quietly and when to laugh too loud.
If you’re new here: hi. I’m Sky.
Professional cryptid.
Unwilling amateur cyborg.
Medically interesting enough to make half my providers sigh when they open my chart.
I sigh too. Often. Loudly.
I live in a haunted meat suit with a deeply suspicious warranty. I spend a lot of time in Bed Jail™. I am almost never alone thanks to my medical alert service dog, Luna. She is part guardian, part shadow, part stern little voice that says, “Excuse me, Mama. Sit your ass down. Right now.”
This space has always been about showing up for ourselves even when our bodies refuse to cooperate.
Chronic illness without inspiration porn.
Disability without apologies.
Love without pretending it’s always easy.
Returning cryptids: welcome home.
New cryptids: pull up a chair.
Welcome to the Lunatic Café. The Den is big enough for all of us.
On Today’s Menu: Saturday Health Updates
I promised that I would show up without inspiration porn.
So here it is.
I don’t have much for you this week.
On Monday, I had another seizure. This time in my kitchen. This time in front of a friend. A friend who chose to narrate and talk over me while it was happening, turning something frightening and vulnerable into something that felt belittling and dehumanizing.
I think you’ve probably already read about that. It’s something I know I haven’t forgotten about. Yes, I’m still hurt over it.
What I really wanted to sit down and talk about today is the neurosurgery consultation.
I went into it with hope.
I left feeling… indifferent.
And somehow that felt worse.
The Appointment I Thought I Was Having
I went into this appointment believing it was a new patient consult with a neurosurgeon.
We’d just come from Costco. I was with my brother Matthew and M&M. I felt okay, at least emotionally. Grounded. Even optimistic.
Then I saw the building.
The same group that performed brain surgery on my grandmother in 2020.
You’d think that would make me feel reassured.
It didn’t.
She’s dead.
Not his fault, but outcomes still matter.
What really shifted everything was realizing that my appointment wasn’t with a doctor at all.
It was with a PA.
Young.
New.
Fresh out of medical school.
And I hated her.
Sorry.
I don’t usually trust the golden retriever type. The ones who radiate enthusiasm so hard it feels rehearsed, like if you praise them they’ll sit and wait for a treat. People like that read as disingenuous to me. Fake.
Maybe that makes me a little too much like House from House M.D.
Everybody lies.
“You’re Here Because of Back Pain?”
No.
I’m here because on March 11th, 2024, I was supposed to have my DRG stimulator removed.
Because after a major car accident.
Because after my EDS decided to stage a mutiny.
Because hairline fractures became part of my future.
Because my pain management doctor told me to get an MRI.
Because I had to go back and forth how many times with Jessica, his RN, and Veronica from MRI about whether or not there were still pieces of the DRG left in my spine.
Because I was lied to.
Gaslit.
Told there was nothing there. Repeatedly.
Until Veronica came down herself after my X-ray, took time out of her day, and showed me the surgical notes from 2024. Until she explained everything.
The notes that proved something was there.
The notes that proved the doctor who insisted he left nothing behind was lying.
The same doctor who referred me to this office.
I can only assume that referral was his way of saying: I messed up, now please fix it.
Yes, I still remember RN Jessica’s name.
No, I haven’t forgotten.
Yes, I used it. Repeatedly.
And I will continue to do so until she is held responsible for her choices. Gaslighting me was a choice. Telling me that Veronica, by name, had no right to talk to Abbott to get my file was a choice. Not taking responsibility for any of it.
Choices.
I Wasn’t Pleasant
Especially when I found out the referral said “back pain.”
M&M tried to keep me friendly, pleasant, under control. Really she did but, not even handing me coffee, and telling me to “behave” worked.
By that point, I’d already been told I might need a laminectomy.
But by that point might had become less of a question and more of a definite.
Finding out that he’d lied not only to me but also to the provider he referred me to was something else entirely.
I wasn’t kind.
I wasn’t happy to be there.
And I wasn’t going to lie about it.
Maybe I could have been nicer.
But my anxiety was already high, and I do not have room in my body for placation.
By the end of the appointment, something shifted.
She dropped the golden retriever routine.
She spoke to me like a person.
She listened like I was one.
That earned her credit.
And respect.
I think she felt it too.
Because as I told her more than once: my body has been trying to fail me for thirty years.
And I am only thirty years old.
I don’t need to be talked down to.
I was there for one reason: to get the abandoned medical waste out of my body so I could proceed onward with getting the tests that I needed to further get the care I needed.
Small Returns, Small Wins
We returned the hateful glue dots and the heart monitor while we were nearby.
I’m glad.
I didn’t want to look at it anymore.
It’s bad enough I’ve had to look at what it’s done to my skin, and knowing it’ll take weeks if not months to find my way back to baseline. Whatever that is.
My Ancestry DNA kit arrived today.
I also found a watch band for my Apple Watch, which should arrive tomorrow if the post office can be believed.
Is it new?
No.
But I’ll take a $20 Apple Watch off eBay over a $500+ one any day when I don’t even know if my skin will tolerate it.
Sometimes harm reduction looks like budgeting.
Luna, Salmon Skins, and Small Joys
We also did what any reasonable household would do while at Costco.
We bought the salmon skin treats.
Luna absolutely loses her mind for them, and honestly, how could we not?
After dinner (and yes, the burgers were phenomenal), we were on the phone with Aunt Lise while M&M gave Luna a couple of her prized treats.
And then she did something she’s never done before.
She tried to beg.
It wasn’t something we taught her.
It just… happened.
Bear used to do that.
With him, we called it Penguin, because he’d do this silly little waddle and make the funniest sound. Seeing Luna try it, unprompted, felt like a quiet echo. A soft reminder.
It made us laugh.
It made us miss him.
And somehow, it made the night feel warmer.
While I was at the grill, flipping burgers between joint protests, M&M and I were also tossing Luna’s tennis ball across the yard.
She has been thriving these past couple of days with the warmer weather.
My body hasn’t.
The odd bout of heat hasn’t been kind to my head or my joints, but days that make my Luna Bean happy still count as good days.
Sometimes the win isn’t pain-free.
Sometimes the win is watching your dog be joyful.
And letting that be enough.
Tonight and Tomorrow
Tonight, we’re making burgers on the Blackstone.
Something I haven’t done in months.
By the time you read this, I’ll either be at the food bank if my body cooperates.
Or I’ll be home for the third week in a row.
I don’t want to stay home.
I don’t want to worry our friends there.
But I also know my health isn’t up to it.
I hate that.
Admitting it feels worse.
Tomorrow night will be either chicken on the grill or pork chops.
The chicken is in Italian marinade, destined for potatoes, bacon, and cheese.
The pork chops are soaking in hot honey, mustard, and pineapple, probably heading toward a teriyaki-style finish over rice.
We’ll see.
All I know right now is that I’m not feeling well.
And I didn’t sleep well last night.
Not ideal after a big appointment.
But it’s where we are.
Love you.
Now say it back.
-Sky
© The Crippled Cryptid
Disability, honesty, and a little chaos.
If you’re here, you belong here.
If today was heavy, thank you for carrying it with me.
If you’re reading from Bed Jail™, give your service dog an extra scritch for me.
🔗 https://linktr.ee/skylanarissa
There’s never pressure to donate. Reading, sharing, or simply staying is more than enough.
But if you’d like to support my ongoing journey toward health, stability, and mobility, you can do so here:
💜 https://www.gofundme.com/f/support-skys-journey-to-health-and-mobility
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