Saturday Health Update | Another Bad Week @The Den
Content Notes
This post discusses chronic illness, medication interruption, medical system frustration, seizures, migraines, and the general chaos that can come with navigating healthcare while disabled.
Please check in with yourself before reading. Some weeks are softer than others.
Welcome to the Cryptid’s Den
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.
Things get heavy in spaces like this. We know that.
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.
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.”
I like to joke that she’s the sassiest spirit guide there is, but when you’re a cryptid who is notoriously good at ignoring red flags from your own body, you need a spirit guide with teeth.
There’s also M&M.
My Player 2.
My soft place to land.
The one who 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%, and she reminds me that survival is still very much a team effort.
This space is for:
Chronic illness without inspiration porn.
Disability without apologies.
Honesty without pretending it’s always neat, hopeful, or easy.
There will probably be dog hair involved.
Occasionally, we throw in the word fuck when it’s medically necessary.
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.
False Spring Is Trying to Kill Me (Again)
On today’s health update: False Spring. Bullshit Weather. Migraines that are out for blood.
Yup.
We’re back to saying the weather is trying to kill me.
And honestly? I didn’t plan on leading with that this week, but here we are.
This was one of those weeks where the weather and my body apparently got together and decided that violence was the correct answer. Luna is on her best behavior trying to mitigate all the things and hold me together, but there’s only so much one service dog can do. You know?
We’ve had:
• A random 70 degree day
• A few 50s and 60s
• Rain
• Hail
• Snow
• Thunderstorms
• Tornado warnings
And if you didn’t know, the largest piece of hail ever recorded in the United States was found in Kankakee, Illinois, a little over an hour away from where we live. So, that’s a comforting little local weather fact.
Basically, every weather event except frogs falling from the sky.
And when you live in a body with Ehlers-Danlos syndrome, POTS, nerve pain, migraines, and a nervous system that reacts to atmospheric pressure like it’s a personal attack, that kind of weather chaos is… not ideal.
My joints feel like they’re trying to escape their meat prison.
And the migraines?
Those are absolutely choosing violence.
It’s been a week where the word fuck has been used more than once.
If we were putting together a swear jar, we might be either rich… in trouble, or maybe both.
The Unexpected DNA Plot Twist
If you saw Thursday’s post, then you already know this week came with a pretty major plot twist.
I got my DNA results back.
And there’s a very real chance that I found my biological father.
We’re doing a more official test to confirm things, so I’m not sharing his name yet. But right now, we’re talking, getting to know each other, and seeing where this road goes.
The wild part?
He was actually one of my mom’s friends. No real surprise there, honestly.
I’ve known him since around 2012, which means we already have a shared history that I never expected from this process.
And honestly?
He’s been kind.
He believes life is short and that people deserve the chance to know where they come from.
I may have thrown a wrench into his week by sliding into his DMs like:
“Hey, were you fooling around with my mom 31 years ago? I think I might be your kid.”
So no, I can’t claim perfect decorum here.
Okay. Maybe I didn’t word it exactly like that but, it went something along those lines.
But I can say this.
Talking with him about music, horror movies, and life over the past week has been unexpectedly… nice.
Turns out we have very similar taste in horror movies and music, which feels weirdly poetic.
The whole nature vs. nurture conversation?
That’s a post for another day.
I have a feeling that story will unfold slowly over time, and I’ll share pieces when they’re ready to be shared.
If you want to read more about that journey, you can find the posts here:
Spit, Spirits, and Questions of Where We Come From
Opening the Envelope: DNA Results
Just know that for now, I’m not disappointed with the outcome.
I’m also really happy with the fact that he’s said that he isn’t disappointed either.
I think he’s a nice guy.
We’ve talked more in the course of a week than I’ve talked to the man who was supposed to be my biological father this whole time, which says a lot about both people.
Some people aren’t meant to be parents at all.
And some people, even when they’re not expecting random 31-year-old daughters to appear out of nowhere, can still step up to the plate.
If that doesn’t say something about character, I don’t know what does.
Pharmacy Roulette
Now let’s talk about the thing that actually made this week hell.
My medication never arrived.
Specifically, Gabapentin.
For those who don’t know, this is one of the medications I take for:
• migraines
• seizures
• CRPS and nerve pain
It’s also one of the only medications that helps me sleep at all.
And it’s not a medication you’re supposed to suddenly stop out of the blue.
I ordered the refill early. Because I always do.
I’ve learned that if I don’t, it won’t get delivered on time.
As you all know, I was in a car wreck in October, which means I don’t drive right now.
So, unless someone takes me to the pharmacy, I have to have my medications delivered to the house. Which is exactly why I submit refills a couple days early, to give the understaffed pharmacies a little leeway to fill them, process them, and send them out on time.
I gave the pharmacy clear instructions.
And somehow the prescription never got filled, never got sent out, and when I asked them to transfer it to another location… that request apparently never went through either.
Which means I escalated to a level 10 Karen by the time I spoke to someone on the phone Wednesday morning because I was miserable. Supervisors, managers. The whole 9-yards. I understand that places like this are understaffed, and that sometimes, things slip through the cracks but these are mistakes that don’t take 5-days to figure out. And the fact that it took so long to figure out was not okay.
By the time I’m writing this on Thursday, I’ve been without it for almost a week.
Which means:
Barely sleeping.
Waking up every 45 minutes to an hour.
And my Apple Watch politely informing me every morning that my sleep score is absolute garbage.
Luna has taken it upon herself to supervise my naps like a very judgmental supervisor.
And by naps, I mostly mean sitting there watching TikToks, or scrolling mindlessly on my phone because my body doesn’t do sleep very well when it doesn’t have its medication. It does nerve pain well. It does muscle spasms very well. Sleep? Not so much.
And no, before you ask, sleeping pills don’t work for me.
I’ve tried them.
I either see the Hat Man (and yes, I like to joke that I owe him money), they make the muscle spasms and nightmares ten times worse, or they somehow manage to make my insomnia even worse than it already is.
Don’t you just love it when the side effects of a medication are the exact thing they’re meant to fix?
No?
Me either.
If I sit too long, Luna plants herself in my lap and sighs like she’s filing paperwork about me.
At this point I’m constantly cold, my appetite is nonexistent, and the only thing my brain wants is caffeine.
Is that good for me?
No.
Do I know that?
Also, yes.
But when you’re running on fumes, survival mode sometimes wins.
I know pharmacies and clinics everywhere are understaffed and stretched thin right now, but when the system breaks down, disabled patients are often the ones who end up paying the price.
There’s a reason I call in my medications early and explain exactly why they need to be delivered on time.
Because if you don’t know, Gabapentin is one of those medications that can cause rebound seizures if you’re pulled off it randomly.
I already have random seizures that we don’t know how to explain.
I don’t need more of them joining the roster.
Thanks.
The Neurology Circus Continues
This week also involved far too many phone calls and way too many spoons spent dealing with one particular office.
The neurologist.
Last week I called to cancel my appointment scheduled for the 10th.
I gave plenty of notice.
No one answered the phone, so I left a voicemail with my name, date of birth, appointment date, and explanation that I needed to reschedule.
Wednesday, I got a call asking why I didn’t show up.
I called back.
Explained that I did call.
Explained that I did leave a voicemail, and that I could give them the exact date and time of my call if they needed to check their records so I wouldn’t be hit with the $50+ no-show fee.
They said they would notify billing and remove it from my chart.
Then Thursday I got another call asking the exact same thing again.
They called at 7 a.m., during one of the only times I’d actually managed to fall asleep.
I didn’t answer.
Because I wasn’t giving up the little sleep I had to repeat the same conversation again.
This office has already told me they don’t want to investigate my seizures further because they labeled them non-epileptic.
But that doesn’t mean I’m okay with leaving it there.
I want answers.
I want to know why this is happening.
Because I can’t think of a single person out there who would be okay with not knowing why they were having seizures. Much less the kind that incapacitates them for 3+ minutes at a time, and they sometimes don’t know what’s going on around them.
That’s scary.
I want to know if there’s anything that can be done to stop it.
“We don’t know” isn’t a satisfying answer when it’s your brain doing weird things.
So yes.
I’m actively looking for a new neurologist.
Because if you were in my position, would you stay with them?
I wouldn’t.
Nothing about “we don’t know” and we’re not going to look into it further is good enough for me. I’m sorry.
The Bright Spots
Not everything this week was terrible.
Friday nights have become comfort show night.
M&M and I have been watching Monarch: Legacy of Monsters on Apple TV+, and if you’re a fan of the MonsterVerse or grew up loving giant monster movies, it’s honestly worth a watch.
Seeing Kurt Russell play Lee Shaw is fantastic.
And the younger version being played by Wyatt Russell, his actual son, makes it even cooler.
I even did a whole Bed Jail Broadcast about season one.
And I might have convinced BJ, also known as The Yard Yeti, to start watching it.
And as if the universe wanted to lean fully into the horror theme this week, Friday also happened to land on Friday the 13th.
Which means M&M and I are fixing a very important gap in her horror education.
She’s never actually seen Friday the 13th. So, you know that means I’ll be wearing my black and orange Friday the 13th pajama pants, settling in on either the couch, or under all of the blankets in the bed, and gearing up for a horror movie marathon.
So, we’re starting from the beginning and getting her caught up before the Camp Crystal Lake series drops on Peacock later this year.
I feel like it’s my civic duty as the household horror gremlin.
The other highlight?
Meatball night.
M&M makes the best meatballs on the planet.
Tender.
Juicy.
Perfect.
My job is making the sauce.
This week my older brother Matthew came over too. Luna has decided he isn’t evil and has therefore granted him the nickname The Compass, which honestly feels like a promotion.
BJ had his meatballs as a sub.
We had ours over spaghetti.
Zero complaints.
Spoon Count: Catastrophic
Overall rating for the week:
–12 out of 10.
Too many spoons used.
Not nearly enough spoons recovered.
False spring might win the weather battle this week, but the cryptid is still here.
Right now the goal is simple:
Get the medication sorted.
Survive the weather chaos.
And claw back whatever sleep I can steal from a haunted nervous system.
A Soft Check-In Before You Go
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.
Before you go, a soft little check-in from the Lunatic Café:
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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