Content Notes

Content Notes: Chronic illness, disability, medical trauma, healthcare frustration, surgery discussion, anemia, iron deficiency, migraine, MCAS, Ehlers-Danlos syndrome (EDS), medical advocacy, service dog recovery, and upcoming spinal surgery.

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.

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.

The Service Human Era

Hello, everyone.

By the time you read this, I’m probably at the food bank, but it’s Saturday and that means health updates, whether I have many for you or not.

This week I get to say that it was a quiet week again.

At least for me.

On Tuesday, Luna got spayed.

Which means I’ve been operating at peak Helicopter Dog Mom levels.

It also means I’ve been dealing with a migraine thanks to the weather doing whatever Illinois weather does best, plus a healthy amount of stress and anxiety because I wanted everything to be perfect for everyone’s favorite sunflower girl.

Because that’s just who I am.

Taking care of me might be who she is.

But taking care of her in return is 100% who I am right back.

There is nothing I wouldn’t do for that little dog.

She is absolutely a piece of my heart and soul that lives outside of my body, shadowing me wherever I go, demanding I sit down, and arguing with me on a daily basis.

Giving me attitude I wouldn’t accept from a full-grown human being, but somehow completely tolerate from a fifty-pound cattle dog with mismatched eyes, endless opinions, and absolutely no respect for personal boundaries.

For everyone who’s been checking on the sunflower girl, she’s doing wonderfully.

She’s eating, drinking, taking her medications, going potty, and acting deeply offended by the concept of activity restrictions.

Every day she seems a little brighter, a little stronger, and a little more convinced that her veterinarian’s instructions should be considered optional.

Unfortunately for her, M&M, the Yard Yeti, and I disagree.

The Phone Call

So, imagine Thursday afternoon.

I’m stretched out on the couch with Luna.

Fire Country is playing in the background.

I’m working on some writing.

She’s snoozing beside me.

And my phone rings.

It’s the hematologist’s office.

The same hematologist I saw the other week.

The reason they’re calling?

To tell me the results of bloodwork that I already knew.

Because I’m the kind of cryptid who follows my lab results through the patient portal and the app.

I don’t sit around twiddling my thumbs waiting for offices to call me back.

Mostly because I’ve been doing this long enough to know there’s always a chance they forget.

Or they don’t call for weeks.

And that’s exactly what happened.

They waited a week.

Then called to tell me what I already knew.

I’m still anemic.

I still have an iron deficiency.

The doctor still doesn’t like my numbers.

Is anyone actually shocked here?

Because you shouldn’t be.

I know I wasn’t.

Nobody Read the Notes

Then came the part that made me stare at my phone like it had personally offended me.

Honestly, it had.

They asked if I was taking an iron supplement.

I said no.

Which is something the doctor already knows.

Because I told her I wasn’t willing to take one unless she prescribed it so my insurance would cover it.

The supplement she wants me taking costs around sixty-five dollars a month out of pocket.

It also contains Red 40.

Which she knows is an MCAS trigger for me.

Not a mild inconvenience.

A genuine trigger.

Even with the Xolair.

Even with everything else I’m on.

It’s one of those breakthrough triggers that can leave me surviving on Benadryl and allergy medications around the clock.

The kind that leave me in a medication haze, half asleep, barely able to function.

So, when they asked if I was taking it, my answer remained the same.

No.

Not because I don’t want treatment.

Because I want treatment that doesn’t make me sick.

Then they suggested iron infusions starting July 10th.

And friends.

The look on my face could probably have powered a small city.

Because July 10th is my foraminotomy.

The spinal surgery I’ve had scheduled for months.

The surgery that is already on the hospital’s calendar.

The surgery that is already in my chart.

The surgery they could see.

I told them exactly that.

The woman on the phone seemed less than thrilled.

Almost as if I was somehow being difficult.

But here’s the thing.

I don’t think setting reasonable boundaries makes someone difficult.

I don’t think expecting healthcare providers to read information already sitting in my chart makes me difficult.

And I certainly don’t think refusing to cancel a spinal surgery so I can sit through an iron infusion makes me difficult.

Especially when the last infusion we tried left me throwing up for three days afterward.

Which is something the doctor knows.

Which is why we only did one when we tried it the first time, last year.

What frustrates me most isn’t even the infusion itself.

It’s how often chronically ill people are expected to rearrange our entire lives around systems that don’t communicate with each other.

We keep the calendars.

We remember the medications.

We know which specialist said what.

We know which ingredient will make us sick.

We know which surgery was scheduled six months ago.

Even when they’re all in the same network, and they can see it all on the computer in front of them…

And somehow we’re still treated like we’re being difficult when we point out information that was already sitting right there in the chart.

Sometimes advocacy isn’t standing on a soapbox.

Sometimes advocacy is sitting on your couch with a migraine while a healing cattle dog snores beside you and saying:

“No. That doesn’t work for me.”

The likelihood of me sitting through a three-hour infusion immediately after having my spine cut open is approximately zero.

I’ve already been told recovery could take three months.

And if you have Ehlers-Danlos syndrome, you already know that timelines and connective tissue often have a complicated relationship.

I heal slowly.

I heal poorly.

And surgery is never something I look forward to.

But I also know I need the rest of these DRG wires removed if I’m ever going to have another MRI.

And I need those MRIs.

Because I’d like answers.

About the seizures.

About the migraines.

About the CRPS.

About the ever-growing collection of mysteries currently haunting my nervous system.

So, no.

I don’t want my back sliced open.

But I do want a chance at answers.

And right now, that means surgery comes first.

🐾 Luna Note

Hello everyone.

It is I.

Luna Bean.

Medical Alert Service Dingo™.

Survivor.

Warrior.

Victim of unimaginable injustice.

Apparently, because I had surgery, I am not allowed to run.

Or jump.

Or chase ball.

Or perform advanced athletic maneuvers off the back of the couch.

The humans keep saying things like “healing” and “recovery” and “doctor’s orders.”

Personally, I think they’re being dramatic.

I feel fine.

They disagree.

Every time I try to demonstrate my excellent health by launching myself across the living room, somebody appears out of nowhere and says, “Luna, absolutely not.”

It’s honestly becoming a hostile work environment.

Mumther has spent the entire week hovering over me like an anxious pigeon.

I appreciate the snacks.

I do not appreciate the restrictions.

I have received frozen treats.

I have received lick mats.

I have received suspicious amounts of cuddles.

And yet somehow the ball remains under lockdown.

Curious.

Very curious.

Please, keep me in your thoughts during this difficult time.

Especially when I am being denied ball.

Thank you for your support.

🐾 Luna Bean
Medical Alert Service Dingo™
Temporary Patient
Future Ball Champion

In my Healing Era™ whatever the fluff that means…

The Sky & Moon Theory

At the time I’m writing this, it’s Friday afternoon.

BJ, the Yard Yeti, is getting ready to leave for the weekend.

Luna is curled up nearby being clingy.

And honestly?

I don’t mind.

For a little while, instead of being a service dog, she’s getting to be cared for.

And instead of being the patient, I’m getting to be the service human.

The truth is that this week wasn’t really about anemia.

It wasn’t really about surgery.

And it wasn’t really about iron levels.

It was about care.

Luna spent this week trusting me to keep her safe while she healed.

I spent this week trusting my medical team to remember things that were already written down.

One of those experiences went considerably better than the other.

Thankfully, the sunflower girl continues to improve.

She’s healing.

She’s resting.

She’s plotting crimes.

And she’s slowly working her way back toward her regularly scheduled chaos.

As for me?

I’m preparing for surgery.

Trying not to think too hard about it.

And taking things one day at a time.

Because if we’ve learned anything around here, it’s that survival isn’t always graceful.

Sometimes it’s just stubborn.

Sometimes it’s coffee.

Sometimes it’s a cattle dog with mismatched eyes demanding that you sit down and make better choices.

And maybe that’s why her name fits so perfectly.

For years, people have shortened my name to Sky.

And if she’s the moon, then maybe we’ve been orbiting each other all along.

Keeping each other afloat.

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

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

P.S. Luna would like it noted for the record that she is healing beautifully, has committed no crimes, and has been unfairly persecuted by anti-ball legislation. 🐾🌻