Saturday Health Update from the Lunatic Café
Content Note
This post discusses chronic illness, disability, medical gaslighting, inaccessible healthcare systems, transportation barriers, and medical stress. Please take care of yourself while reading.
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.
We understand that things get heavy, especially in spaces like this.
If you’re new here, hi. I’m Sky.
Professional cryptid.
Unwilling amateur cyborg.
Occasional chronic illness and disability advocate.
Someone who has said “fuck” a lot this week.
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 a team effort.
This space is for chronic illness without inspiration porn.
Disability without apologies.
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.
Weekly Spoon Count
Each day starts with 5 spoons.
That gives us 35 spoons for the week.
Here’s how the haunted meat suit spent them.
Weekly Energy Budget
Monday
🥄🥄🥄🥄🥄
Tuesday
🥄🥄🥄🥄🥄
Wednesday
🥄🥄🥄🥄🥄
Thursday
🥄🥄🥄🥄🥄
Friday
🥄🥄🥄🥄🥄
Saturday
🥄🥄🥄🥄🥄
Sunday
🥄🥄🥄🥄🥄
Total: 35 spoons
And this week?
We borrowed two extra spoons from the weekend.
Grand total spent:
🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄
🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄🥄
37 spoons.
Translation: the nervous system filed for overtime and the body union is considering a strike.
False Spring: Act I
Illinois weather continues to be a chaotic little gremlin.
One minute it’s warm.
The next minute it’s cold again.
Sometimes there are flurries.
Sometimes rain.
Either way I keep bouncing between fuzzy slipper socks and daydreaming about tomatoes like I’ve forgotten what state I live in.
I wish the weather would pick a lane.
At this point the only thing I’m confident about is that the groundhog lied to me.
I don’t think we’re getting spring.
I think we’re firmly situated in False Spring: Act I.
And it doesn’t seem like it plans to leave anytime soon.
Cold weather hits my body hard.
My joints scream.
My migraines flare.
My entire system feels like it’s running several software updates behind.
Eventually the weather will even out and I’ll probably find my baseline again.
Will it magically solve the seizure mystery?
Probably not.
All we know right now is that the seizures are non-epileptic, which is good in one sense but frustrating in another because it still leaves us with a giant unanswered question.
And answers are hard to find when the rest of my medical puzzle is still in motion.
Especially when my care currently revolves around a bundle of wires in my spine that no one seems able to scan properly because I still can’t schedule the CT for the DRG stimulator.
Which leads to the next problem.
Transportation.
RTA Transit and the Bureaucratic Obstacle Course
I was approved for an RTA Ride Free transit pass, which is supposed to make life easier for disabled riders.
In theory it allows me to use trains, Pace buses, and paratransit services.
In reality?
Every time I try to use it, it feels like running a bureaucratic obstacle course while my body is already exhausted.
The first time I tried to schedule a ride was for the food bank.
The paperwork said that I could ride with a PCA and service animal. It said rides could be booked up to a week in advance.
What it did not say was that after activating the card, I apparently needed to wait 24–48 hours before the system would even let me book anything.
No one called me back like they said they would.
By the time I called again, all the rides for Saturday were gone.
So, I missed the food bank.
The Ventra Phone Call From Hell
When I tried to schedule transportation for my cardiology appointment, things somehow got worse.
The dispatcher said a ride could be arranged.
Pickup: 12:30 PM
Appointment: 1:45 PM in Libertyville
Return: 2:45 PM
But then she told me it would cost $6 each way.
Which made no sense, because I have the Ride Free Permit.
When I mentioned this, she gave me another number and told me to call Ventra.
That phone call?
Absolute disaster.
The woman I reached was one of the rudest customer service representatives I’ve ever encountered. (And this is coming from someone who has worked customer service.)
She told me the bus is expensive for everyone else and that I should feel lucky to ride for free. She said $6 wasn’t too much to ask and that I wasn’t “too good” to pay it.
Then she hung up.
I wasn’t saying $6 was impossible.
I was saying that the program documentation says I don’t have to pay it.
I’m on disability for a reason.
I can’t drive right now.
Without this program my options are relying on friends, family, or paying nearly $50 for a single Uber ride one way.
That call alone burned through more spoons than it should have.
Sometimes it genuinely feels like the system is built to make leaving the house so difficult that disabled people eventually stop trying.
The Taxi Ride From Hell
Eventually the ride did show up.
Late. After calling twice to make sure they were coming at all.
Instead of paratransit, they sent a cab.
The driver couldn’t keep his hands off his phone and kept swerving into other lanes while people honked at him.
Yes, I reported him.
Because that was terrifying.
And it was storming.
The storm woke me and Luna before 7am.
Cardiology and Medical Gaslighting
The appointment itself somehow managed to be worse than the transportation.
The cardiologist said my wearable heart monitor results were “fine.”
Even though the results clearly show that they weren’t.
Then he suggested medication that would raise my blood pressure, despite the fact that I already have high blood pressure and POTS.
But the moment that made my brain short-circuit?
He refused to fill out disability paperwork.
According to him:
“Our office doesn’t do that because POTS isn’t a disability.”
He told me to take the paperwork to my neurologist or my primary care doctor.
Let’s just say that if I never see that cardiologist again, I will not mourn the loss.
The reviews on Yelp about him, 100% true. He has the bedside manner of a fart.
The Ride Home That Never Came
RTA was supposed to pick me up at 2:45 PM.
No call.
At 3:30 PM I called dispatch.
They said the ride would be another 20 minutes.
Then that turned into 4 PM.
Did anyone call to tell me?
Of course not.
Yes, it was cheaper than Uber.
But the issue isn’t just the money.
It’s the unpredictability.
When you’re medically complex, appointments often stack in the same day. Transportation delays can cost people same-day cancellation fees for other doctors.
By the time I got home it was almost 5 PM.
Migraine.
Exhaustion.
Total system shutdown.
I crawled into Bed Jail™ and slept until 7:45.
The Rest of the Week
Aside from that chaos, my health has been… okay-ish.
If “okay-ish” means:
• constantly cold
• unable to stay warm
• doing everything possible to stay bundled
One minute I’m outside playing with Luna on the deck.
Happy.
Ten minutes later I’m freezing and begging for Bed Jail™ because my body has no idea what to do with this weather.
I’m not built for the cold.
I’m also not built for extreme heat.
Which is why if moving to a month were possible, I would relocate immediately to October.
Spooky season.
Seventy degrees.
Pretty leaves everywhere.
Honestly?
Perfect.
Luna’s Professional Medical Opinion
After careful observation of the patient this week, Dr. Luna has issued the following statement:
Diagnosis:
Mumther attempted to ignore multiple symptoms and made several questionable decisions involving overexertion.
Treatment Plan:
Mandatory naps.
Hydration.
Increased snack intake.
Frequent application of service dog cuddles.
Additional Notes from the Doctor:
Patient remains stubborn but highly trainable.
Cardiology doctor deserves 2 tablets of teeth in rump.
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
Leave a comment