Content Note

This post discusses chronic illness, disability, medical trauma, medication access issues, migraines, ableism, public harassment related to disability parking, surgery anxiety, and the everyday realities of living in a medically complicated body.

As always, take care of yourself first. These posts will still be here when you’re ready.

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.

Medically complex enough to make my chart look like a horror anthology.

Or it would be if my cardiologist believed in things like POTS.

Apparently, it’s a “TikTok disease,” so I’m probably fine.

M&M keeps me contained to one cup of coffee. Two on exceptionally cursed days. So obviously, I’m thriving.

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.

🌪️ Illinois: Land of Lincoln & Apparently Tornado Multiplication

If you’ve been keeping up with us lately, or the meteorologists here in Illinois, you know things haven’t exactly been going smoothly.

Some days start quietly. Maybe it’s even sunny.

Then suddenly it’s windy, raining sideways, and I’m questioning whether I moved to Kansas without telling anyone and changed Luna’s name to Toto.

Except she isn’t a tiny brown dog who fits into a basket.

And she absolutely does not want to go to Oz.

I’m not a little girl in a blue dress, and frankly, I don’t think the Wizard has what it takes to fix Ehlers-Danlos Syndrome anyway.

So, if Illinois could knock it off with the tornadoes already, that would be fucking great. Thanks.

The back-and-forth weather has been good for exactly two things:

My garden.

And the weeds.

Both are thriving.

I, however, am not.

Between the humidity, rain showing up uninvited, muscle spasms, and migraines, I can barely keep up with the weeds before my body decides we’re closed for business again.

One of the weirdest things about being chronically ill is that I sometimes know a storm is coming before my weather app does.

My joints start complaining.

My head starts throbbing.

My body becomes a tiny, angry barometer with terrible customer service.

Sometimes I don’t need meteorologists.

I just need to check whether my nervous system has started acting haunted.

🐾 The Service Dingo™ Has Been Released From Recovery Jail

The good news is that Luna Bean is officially out of her two-week healing window.

Not that she was particularly interested in following it.

She never really wore the cone or the surgery suit because she didn’t need them. She ignored her stitches, left the surgical site alone, and spent most of her recovery trying to convince everyone that she was perfectly capable of resuming her regularly scheduled programming.

Which mostly consists of:

Playing ball.

Following me from room to room.

And herding me around the house like it’s her full-time job.

Which, to be fair, it kind of is.

We still enforced rest because recovery deserves respect.

Even for stubborn Service Dingoes.

Especially for stubborn Service Dingoes.

🍏 Powered Entirely by Nurtec, Electrolytes & Spite

As for me?

I am currently being held together by Nurtec, coffee, and enough electrolytes to fill a small pond.

My favorites lately are the Sour Green Apple and Sour Peach Powerades.

Sour. Sour. Sour.

Because if I already feel like garbage, I might as well lean into the sensory seeking behavior.

And since I apparently live in a world where the pear Liquid I.V. has vanished into the void, these are my consolation prizes.

💊 Walgreens & the Medication Hunger Games

I’m also having yet another feud with Walgreens.

And listen.

I know pharmacy staff have difficult jobs.

I know they’re understaffed.

I know they’re dealing with a lot.

But when medications cannot safely be stopped cold turkey, and someone calls ahead, confirms refills, confirms dates, confirms everything, talks to management, receives notifications saying medications are ready, drives there, and is then told they’re not ready…

I’m allowed to be angry.

Because this isn’t just an inconvenience.

It’s an access issue.

Not everyone has the luxury of making multiple trips.

Not everyone has reliable transportation.

And for me, I’ve now been without Qulipta for days at the time of writing this.

Which means my migraines have been worse.

Which means I feel worse.

Which means the entire rest of my body has decided to join the protest.

Medical stuff has a way of shrinking your world if you let it.

Suddenly you’re planning your weeks around appointments, refills, insurance calls, surgeries, recovery timelines, and symptom tracking.

Sometimes it feels less like living and more like managing a very complicated subscription service that I never signed up for.

♿ Apparently My Disability Needs Better Branding

And if that wasn’t enough, I’ve also been running into access problems.

Specifically:

People who think they know my body better than I do.

People who think disability has a particular appearance.

People who think they have the right to question why I’m parked in an accessible spot.

I have the placard.

I am legally allowed to use those spaces.

I am disabled whether I’m using my walker or not.

I am disabled whether I’m using my cane or not.

I am disabled whether Luna is with me or not.

I’m disabled on my good days.

I’m disabled on my bad days.

The thing about invisible disabilities is that they’re only invisible to other people.

I still live in this body every second of every day.

Sometimes I use my placard because I genuinely cannot manage the extra walk.

Sometimes I leave those spaces open because I feel capable of parking farther away that day.

Neither decision makes me more or less disabled.

What you won’t see me doing is walking up to strangers and demanding proof of their disabilities.

Because that’s just fucking weird.

The only time you’ll catch me side-eyeing someone is when a delivery driver is using an accessible spot as their personal loading zone or someone without a placard is camping there while scrolling on their phone.

That isn’t disability.

That’s entitlement.

What isn’t reasonable is what happened earlier this week.

Someone accused M&M and me of faking disability and taking up space in an Aldi parking lot.

And yes.

I am still angry.

And yes.

It’s still rattling around in my brain.

Because complete strangers decided they knew more about my body than I do.

And honestly?

I’m tired.

Disabled people should not have to perform our pain loudly enough for strangers to believe us.

🏥 Surgery Update: The Event That Ate My Summer

In other news, I got my Xolair shots on Monday and completed my pre-surgery physical.

The foraminotomy is now scheduled for July 9th.

Again.

Because it got rescheduled.

Again.

At this point, I’m exhausted from building my entire life around one medical event that hasn’t even happened yet.

I know surgery is necessary.

I know it’s important.

But there’s something uniquely draining about organizing your entire summer around appointments, phone calls, waiting, rescheduling, and anticipation.

It’s hard to plan anything.

It’s hard to relax.

It feels like living in the waiting room before the waiting room.

I’m also trying to give myself permission to grieve the parts of summer that are going to look different this year.

The things I wanted to do but can’t now…

Disability asks us to become very good at adapting, but adaptation and disappointment can exist in the same room.

I’m hoping July 9th sticks.

Because I’d really like to stop rearranging my life around this one stupid event.

But I guess it is what it is.

🌱 Tiny Victories of the Week

• Luna graduated from recovery jail.

• The garden is alive, even if the weeds are thriving a little too enthusiastically.

• I made it to my appointments.

• I advocated for myself.

• I kept going.

• I drank my electrolytes and ate actual food at least some of the time.

Sometimes surviving a difficult week is the accomplishment.

Sometimes that’s enough.

The garden and I have something in common this year.

We’re both growing in weird directions.

We’re both a little unruly.

We’re both doing our best despite some questionable weather.

Disability has taught me that a good week and a hard week can be the same week.

Luna healed.

My garden is growing.

I got my appointments done.

I was also in pain.

I was frustrated.

I was angry.

I was tired.

Both things are true.

I think learning to hold joy and grief in the same hands might be one of the hardest parts of surviving in a body like this.

I joke a lot because that’s how I survive this stuff, but the truth is that chronic illness can be incredibly lonely.

I’m grateful that mine isn’t a solo campaign.

I have a partner who reminds me to be gentle with myself and a Service Dingo™ who regularly stages interventions when my body starts throwing red flags.

I don’t take either of them for granted.

🐾 Luna’s Pawprint Corner

Official Service Dingo™ Statement:

Mumther says the weather chose violence this week.

I would like the record to show that I did not choose violence.

I chose naps.

I chose my ball.

I chose following Mumther into the bathroom because she clearly needed supervision.

I also chose repeatedly informing everyone that I was finished with surgery recovery approximately eleven minutes after surgery.

No one listened.

Rude.

🩵🐾

Pawprint Rating: 3/5 paws.

Could’ve used more snacks.

🐾 A Note from Luna

I can smell a migraine before it happens.

I can hear changes in breathing.

I notice when Mumther’s heart is doing weird little acrobatics.

I know when she’s about to hit a wall before she does.

Sometimes she uses a cane.

Sometimes she uses a walker.

Sometimes she doesn’t use anything at all.

My job doesn’t change.

Because my human’s disabilities don’t magically disappear when other people can’t see them.

Please stop asking disabled people to perform their suffering for strangers.

Thank you.

Love,

Luna

Professional Service Dingo™

Guardian. Enforcer. Collector of tennis balls.

🐾

🐾 Luna’s Final Notes

Mumther is tired.

She forgets that tired doesn’t mean failing.

Recovery counts.

Rest counts.

Asking for help counts.

Being angry about inaccessible systems counts.

Existing in a disabled body on a difficult day counts.

Also, she should probably drink more water.

I said what I said.

🩵🐾

Official pawprint affixed here by Luna, who has absolutely never ignored medical advice in her entire life and would appreciate it if no one fact-checked that statement.

🐾

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.

☕ The Lunatic Café Check-In

Before you go:

💊 Did you take your meds if it’s time?

🥤 Did you drink something today?

🍴 Did you eat something?

🌿 Did you have one small moment that didn’t completely suck?

You don’t have to answer out loud.

I’m just glad you’re here.

Survival isn’t always dramatic.

Sometimes it’s remembering your meds, drinking something with electrolytes, and deciding that making it through another weird week in your haunted meat suit counts as enough.

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’d like to support the long, unglamorous work of survival and mobility:

💜 https://www.gofundme.com/f/support-skys-journey-to-health-and-mobility