The Crippled Cryptid: Saturday Health Update
Spoon Rating: 🥄🥄☆☆☆ (2 out of 5 spoons)
Spoon Inventory:
• 1 spoon went to weather whiplash
• 1 spoon went to phone calls and appointment juggling
• The remaining three are somewhere between neurology and existential dread, refusing to return my calls
Content Note:
This post discusses chronic illness, seizures, medical uncertainty, surgical complications, medical trauma, and anger related to provider negligence. Please check in with yourself before reading. Skipping is always allowed. Existing is enough.
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, 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 heavier than a weighted blanket you didn’t consent to.
No one here is required to power through.
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 read like a horror anthology with footnotes.
Most days are lived in a haunted meat suit with a questionable warranty and a long-standing feud with my nervous system. I cope with sarcasm, stubborn hope, whatever snacks survived the week, and a concerning amount of coffee. (Don’t tell my cardiologist.)
I spend a lot of time in Bed Jail™, but I’m rarely alone thanks to Luna.
Guardian. Enforcer. Tiny chaos gremlin with a medical degree she absolutely conferred upon herself.
She starts with, “Hey. Sit down.”
If ignored, she upgrades to, “Mumther. We are not negotiating with your bad decisions today.”
I think it’s funny the way I go from Mama to Mumther, like it’s my full government name. She’s a sassy little spirit guide but, when you have a bad habit of ignoring every red flag your immune system throws at you, sometimes that is exactly the kind of vibe you need.
And lately, she’s been alerting consistently around the seizure episodes. Which tells me my body knows something is happening even if neurology hasn’t named it yet.
And then there’s M&M.
My Player 2. My soft place to land. The steady hands with ginger ale and soup when the world tips sideways. The one who gives the 90% when I’m running on fumes and vibes.
This space is for:
• Chronic illness without inspiration porn.
• Disability without apology.
• Honesty without pretending it’s tidy.
There will probably be dog hair involved.
Welcome to the Lunatic Café.
On Today’s Menu: Birthdays & Burgers
I am officially 31.
That sentence still feels slightly illegal to type.
For years I told M&M I wouldn’t make it to 30. Then when I did, I shifted the goalpost to 31. A little casual self-doom countdown as a personality trait. Not my healthiest coping mechanism.
I think I’m retiring that bit.
Not because the fear magically evaporated.
But because I finally have things worth stubbornly sticking around for.
Luna.
M&M.
Birthday burgers made by the love of my life.
If you read my birthday post, you know those burgers were practically ceremonial. Grilled proof of survival. I’ll leave that post linked here.
I don’t feel older.
I feel… extended. Like I’ve been granted time I wasn’t budgeting for.
Maybe the new thing I say isn’t “I won’t make it.”
Maybe it’s just: I’m still here.
And for now, that’s enough.
False Spring Act 1: Mud Season (Featuring Bullshit)
We are currently living in that chaotic Midwest intermission known as False Spring Act 1.
One day it’s 62 and sunny enough to whisper about gardens and tomatoes.
The next it’s a damp; dingy 30 degrees and my joints are filing formal complaints.
The temperature refuses to pick a lane and my nervous system is staging protests about it.
Luna is equally offended. She would prefer unlimited outdoor playtime. Unfortunately, her short coat and delicate paws are not designed for extended winter nonsense. She may possess the confidence of a sled dog, but she is built like a stylish suburban athlete in a cozy sweater. (Don’t let her fool you, she does not enjoy the cold.)
We weigh the pros and cons.
We limit exposure.
We accept the side eye.
And when she comes inside, she gets her paws washed.
We reapply Burt’s Bees paw and nose balm. (Our family’s favorite.)
She gets brushed.
Sometimes we apply her rinseless bath and change her sweater.
Depending on the day, she also gets her nails filed down with the electronic nail filer.
Don’t worry, she gets salmon skin treats for all of it.
The Week of Many Phone Calls
If chronic illness had a villain arc, it would be administrative.
This week included:
• Scheduling a well visit for Monday
• Scheduling allergy shots for Monday
• Mentally preparing to do both on the same day
Necessary? Yes.
Fun? Absolutely not.
No one likes the idea of potential blood draws. Especially with as difficult as my veins can be.
Because I already know they won’t have the portable ultrasound that they need to get my blood on the first try.
I also got my EEG results back last week.
The seizures are non-epileptic.
And before anyone’s brain goes somewhere unhelpful, let me say this clearly: non-epileptic does not mean not real. It means the seizures are not caused by the electrical patterns associated with epilepsy.
I stared at the results longer than I’d like to admit, half hoping the words would rearrange themselves into something clearer. Not because I wanted it to be epilepsy but because I wanted something vaguely answer-shaped.
Something that sounds like progress.
But what it actually means is we are now standing in a diagnostic gray area instead of on a clearly marked treatment path.
It is another “we don’t know.”
A non-answer is still uncertainty. It still leaves you holding a map with no legend.
Between appointments on Monday, I’m going to call neurology and ask the question I keep asking:
Okay. So, what now?
I don’t need a miracle.
I need a plan.
A direction. A referral. A next step. Something that moves this from “mystery” to “managed.”
I’m not asking for perfection.
I just want to make sure that I’m going to be safe.
And safety starts by having an idea of why these seizures are happening. “I don’t know” isn’t that.
And if they can’t give me that, then I’m going to have to take what little test results I have and find another doctor who is willing to try and find more answers. And that sucks.
The DRG Saga Is Not Over
I still cannot have an MRI.
Which isn’t the answer I was hoping to have by the end of February.
I thought that by now I would have at least been able to have the CT scan done, so I could have some kind of answers… instead, I feel like I’m dragging this out longer than a 6 season television show series.
I still haven’t been able to schedule the CT scan to determine exactly where the remaining wires from the DRG are in my spine. Wires that were supposed to be removed almost two years ago.
If I had trusted the pain management office blindly and gone in for an MRI when they told me I was cleared, it could have caused preventable, catastrophic injury.
And before you think, “hey Sky, that’s a huge accusation, are you sure you didn’t misunderstand?” No. I’m sure. I have it in writing. I have it in MyChart notes written by the doctor’s nurse. Multiple times.
That is not a small oversight.
I should have been given all of the information. That’s the bare minimum.
And yes, I’m still angry.
Anger in disabled bodies is often labeled bitterness. But sometimes anger is just clarity with teeth.
This isn’t anti-doctor.
It’s anti-negligence.
It’s anti-being-told-you’re-fine-when-you’re-not.
It means I will need another spinal surgery to remove what should have already been removed. It means the DRG chapter isn’t closed. It’s just… delayed.
And I am allowed to be frustrated that survival keeps coming with extra sequels.
Especially when I’m the one explaining to the insurance company why we need to redo a surgery they thought was already done. Incredible.
Two Spoons & a Movie Night
Overall, this week gets two spoons out of five.
Weather chaos.
Medical uncertainty.
Administrative nonsense.
But joy still happened.
There was movie night for my birthday.
There were burgers.
There was Mario Fortune Street, where M&M beat me and I am absolutely not pouting about it at all. (I was robbed.)
The week wasn’t all good.
But it wasn’t joyless either.
Two spoons survived. The rest are in witness protection.
Weekend Wishes & Tomato Delusions
We’re hoping to make it to the food bank today. Beyond that, it’s a quiet weekend.
My aunt in Texas informed me it’s going to be 90 degrees there. I do not require that level of enthusiasm from the sun, but I am deeply done with 30 degree days.
I am ready for spring.
I am ready to plant my garden.
I am ready for tomato season.
Fresh tomato salads.
Fresh tomato sauce.
Fresh tomato salsa.
Yes. I am fully unhinged in February in Illinois dreaming about tomatoes.
Let me have this.
Monday will come whether I’m ready or not. I’m choosing to show up anyway.
If This Hit Close to Home
If something here felt familiar, you are not alone.
If you stayed even when it got heavy, thank you.
You do not have to earn your place here.
A Soft 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 one haunted meat suit looking out for another.
Same cryptid. Different week.
–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
Leave a comment