The DRG Saga: Unfinished Business
Content Note
This post discusses chronic illness, disability, medical trauma, surgical complications, and ongoing medical uncertainty.
Please take care of yourself while reading. You can always come back later. You are not required to carry this with me.
If this brings up your own experiences with medical trauma or dismissal, you deserve support too. You’re not imagining it, and you’re not alone.
Welcome to The Crippled Cryptid
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.
No one will ever judge you for skipping a post here. We understand that things get heavy.
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. I cope with sarcasm, stubborn hope, whatever snacks survived the week, and a concerning amount of coffee. (I’d tell you not to tell my cardiologist, but he doesn’t seem to think POTS is a disability.)
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.
Luna is here.
Medical alert service dog. Guardian. Enforcer. Tiny chaos gremlin with a medical degree she absolutely gave herself.
She’s the sassy little voice that says, “Hey. Sit down.”
And when I ignore her: “Mumther, we are not negotiating with your bad decisions today.”
Some people might call that selective bullying. I call it life-saving accountability.
This week, she’s been stricter than usual.
More insistent.
Less willing to let things slide.
I think she knows something I don’t.
And then there’s 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. She gives the 90% when I only have 10%, and 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.
And I’m warning you now, you will probably say “what the fuck?” at least once while you’re here. That’s normal. We do it too.
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.
On Today’s Menu: CT Scans, Foraminotomies, & Winter Part 400
Full disclosure: your ghoul started writing this on Tuesday.
Yes, I know. Suspiciously responsible. Slightly alarming.
But sometimes information lands in your lap like a thunderclap, and you either write it down or let it rattle around your skull like a loose marble.
This is one of those updates.
And it belongs to the DRG saga.
A Spring Moment, Anyway
I’m finishing this on Friday afternoon, sitting in the back room with a cup of coffee in my hands, watching robins hop around empty planters like they’ve personally decided it’s spring.
It’s 66 degrees. Illinois is doing what it does best: refusing to commit to a season.
But today is March 20th. The First Day of Spring.
And somehow, writing this while the world tilts back toward the light feels… right.
Even if the content itself is anything but light.
To make up for that, there’s also a halfway decent cut of beef in the crockpot that I managed to grab on sale. And we’ll be having it as French dip sandwiches for dinner.
Little things matter.
And for a little while today, I got to take Luna outside.
We played with her ball. Nothing big. Nothing dramatic. Just a few throws, a few happy zooms, her being entirely too proud of herself.
It wasn’t long.
But it was enough to remind me that my life is still here, even in pieces.
And that matters more than I know how to explain.
The Thing That Should Have Been Removed… Wasn’t
For anyone new here, the DRG saga refers to a spinal cord stimulator implanted in 2021 for CRPS.
It has caused ongoing complications ever since.
There was a revision surgery in 2022 after it shocked and burned me. The battery failed. More leads were added.
And then, in March 2024, it was supposed to be fully removed.
It wasn’t.
There are still lead tips, platinum iridium, sitting in the L5-S1 space of my spine.
Left behind.
Not disclosed.
And those retained pieces have been preventing me from getting MRIs.
Which means delays in figuring out what’s happening with my left leg.
Delays in investigating the seizures we still don’t fully understand.
Right now, all I’ve been told is that the seizures are non-epileptic.
Non-epileptic doesn’t mean not real.
It just means medicine hasn’t bothered to fully understand it yet.
Which somehow still leaves me on Keppra.
And still without real answers.
Meaning, I’m still stuck with all of Keppra’s nasty side-effects.
The CT Scan (and the Call That Followed)
A neurosurgeon I saw back in January ordered a CT scan.
It took me until this week to get it done. Transportation alone turned it into a side quest with boss-level difficulty.
But I got it done.
And this morning, he called.
He saw it. Clearly. Exactly where the retained material is sitting.
And for the first time in a long time, someone didn’t just acknowledge the problem.
He had a plan.
I wish I could say that made me feel better.
Instead, it made everything feel heavier. Realer. Closer.
Enter: The Foraminotomy
The proposed solution is a procedure called a foraminotomy.
In simple terms, it creates more space around the nerve so the surgeon can safely remove what shouldn’t be there.
The goal is least invasive.
Less disruption.
Less scar tissue.
Less risk of adding even more chaos to a body that has already been through enough.
And I do appreciate that.
This mess wasn’t his doing.
But he’s the one trying to fix it.
And that matters.
Because leaving it there isn’t neutral.
It’s a risk.
April 1st, Because Of Course It Is
Before anything happens, I have one more appointment on April 1st.
Yes. April Fool’s Day.
I didn’t even clock the irony until Aunt Lise pointed it out.
Now it feels… on brand.
Don’t worry. I asked all the appropriate and inappropriate questions before agreeing to anything. I took notes. I interrogated the situation like a medically traumatized cryptid with trust issues.
Because this isn’t my first surgery.
And I need to go into this one prepared.
And let’s be honest, your ghoul is a medically traumatized cryptid with trust issues.
The Question That Broke the Script
At one point, he asked:
“Do you have pain in your back? Your legs? Weakness?”
He was trying to warn me that the surgery could cause all of these things. Which was honestly sweet of him.
And I had to stop him.
Respectfully.
I have fibromyalgia.
I have EDS.
I have CRPS.
And that isn’t even the end of the list.
There is not a single part of my body that isn’t in pain.
Weakness isn’t a symptom.
It’s the baseline.
I use a cane. Sometimes a walker. Sometimes a wheelchair.
Is that because of the DRG?
Maybe.
Maybe not.
And that’s the problem.
Too many overlapping possibilities. Not enough clear answers.
“You’re Too Young”
He said what they always say.
“I’m sorry. You’re too young to be going through all of this.”
Too young.
As if age is a shield.
As if bodies check ID before they fall apart.
I didn’t tell him about the people I grew up with. The trips, the vacations, the lives I don’t get to live.
I didn’t tell him how grief can exist alongside gratitude.
I just thanked him.
Because sometimes that’s easier.
Especially since he was kind.
And I appreciate kindness and bedside manner, especially when I’m normally faced with doctors who wield disbelief like a sword.
The Part That Still Doesn’t Sit Right
I need to say this plainly.
This should have been handled the first time.
I should not be here.
I should not need another surgery to remove something that was supposed to be removed already.
And I absolutely should not have been told it was safe to get an MRI when there was retained metal in my spine.
Multiple times.
So yes. I’m leaving that doctor’s care.
And yes, I am exploring my options, including legal ones.
Because “you deserved better” is not just comfort.
Sometimes, it’s evidence.
And sometimes, it’s just the fucking truth.
Two things can be true at once.
What Happens Next
Recovery is estimated at 2–3 months.
No bending.
No lifting.
No pretending I’m not human just because I’m stubborn.
Which means:
Garden season? Mostly out.
Playing with Luna the way I want to? Limited.
That kind of grief is quiet.
It lives in small things. Dirt under your nails. Sun on your shoulders. The version of the season you thought you’d have.
The garden will still happen. Just carefully. Under M&M and the Yard Yeti’s supervision.
And my completely normal, not-at-all controlling oversight from a chair.
Or the deck. Or a patch of shady grass nearby, begging them not to scalp or kill my golden cherry tomatoes.
Luna will still play.
I just won’t be the one doing it the way I want to.
And that hurts.
It really fucking hurts.
Because I cannot tell you how long I’ve been waiting for spring this year.
It hurts in ways that don’t feel quiet at all.
It hurts in ways that make me want to scream and cry and hit things.
But I won’t.
Because the past isn’t a place you should live. You can visit. But you cannot stay.
Aunt Lise taught me that.
Meanwhile, in the Frozen Wasteland
We had a blizzard.
Because winter saw the calendar and chose violence.
Cold makes everything worse. My joints hate it. Luna’s toebeans hate it. We are united in our suffering.
Welcome to Winter Part 400.
Bed Jail™ has been heavily utilized.
Partly by choice.
Partly because the Service Dingo™ said absolutely not.
And honestly?
I think I’m less mad about the cold and more mad about everything else.
And honestly? There are parts of me that feel completely justified in that anger.
One small win, though:
Apple TV+ decided to drop the new episode of Monarch: Legacy of Monsters Thursday night instead of making me wait until Friday.
No spoilers.
Just… it was good. Frustrating, like they all are.
But good.
And sometimes, a good episode of something that lets you disappear for an hour is enough to take the edge off a week like this.
The Tree
The tree is gone.
The one I grew up with.
It’s still out there, cut down, reduced to firewood we don’t even have a fireplace for.
BJ counted the rings.
Sixty-four years.
Knowing that didn’t make it easier.
If anything, it made it heavier.
Before it’s fully gone, I’m going to take one last picture.
For nostalgia.
For closure.
For my heart.
Because sometimes letting go isn’t clean.
Sometimes it looks like standing in your yard, staring at something that used to be alive, and wishing you had more time.
Have I decided what’s going there yet? No.
I know I said I wanted a fruit tree.
And I still do.
But losing my pine feels like losing a piece of me that I don’t think I’ll ever get back.
The Ongoing Search for a Medical Team
I’m still trying to build a care team.
One that communicates.
One that listens.
One that doesn’t leave me in uncertainty for months or years.
Because being told “we don’t need to look into that” when something is actively happening in your body?
That’s not care.
That’s dismissal.
Especially when “that” is seizures.
After a 3-day EEG where I didn’t even have an episode.
They knew they weren’t daily.
And still chose not to investigate further.
Make that make sense.
And after enough of that, your brain starts to whisper:
Maybe I’m the problem.
No.
Confusion is a common side effect of being dismissed for too long.
Advocating for yourself is not the problem.
Expecting competent care is not the problem.
Wanting answers is not the problem.
If you’re in the same boat- read that again. As many times as you need.
Write it down. Stick it somewhere visible.
Because you deserve care.
You deserve answers.
You deserve advocacy.
We all do.
A Small, Cautious Hope
I may have found a neurologist.
I’m not celebrating yet. I haven’t met him in person.
But he works within the hospital network I trust. He connects with my GP’s office.
That matters.
Appointment is in July. But I’m on the waitlist in case something opens sooner.
Until then, I’m stuck playing nice with the current one so I can keep access to migraine meds.
Because right now?
No Qulipta for a week.
Rationing Nurtec.
Migraines and thunderclap headaches fully out of control.
And still expected to function.
And here your ghoul is, functioning, waiting for a pharmacy drop-off… and doing it with a lot of coffee on-board. But managing. That counts, right?
Let Me Say This Clearly
I deserve care.
I deserve answers.
I deserve a neurologist who doesn’t slap “non-epileptic” on my chart and call it a day.
Because not knowing doesn’t make things better.
It makes everything louder.
Closing Time at the Lunatic Café
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:
Take your meds if it’s time.
Drink some water.
Eat something small.
No gold stars required.
Just survival.
And somehow, despite everything, spring showed up anyway.
Even here.
Even now.
From one haunted meat suit to another.
Love you, now say it back.
-Sky
© The Crippled Cryptid
Disability. Honesty. Survival without the performance.
🔗 https://linktr.ee/skylanarissa
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