Content Note:
This post discusses chronic illness, medical testing, medication side effects, MCAS reactions including anaphylaxis, medical anxiety, body-based restlessness, and experiences with discrimination. Please read gently and take care of yourself.
Welcome Back to the Cryptid’s Den
Welcome back to The Crippled Cryptid, where disability, chronic illness, service dogs, and everyday sorcery gather under the same soft lamp like friendly ghosts sharing secrets.
If you’re new here: hi, I’m Sky.
Professional cryptid.
Unwilling amateur cyborg.
Medically interesting enough to make half my providers sigh when they open my chart. I sigh too. Then I roll my eyes.
I live in a haunted meat suit with a deeply questionable warranty, and today we’re talking about what happens after the holidays wind down. When the decorations come down, the adrenaline fades, and medical reality taps you on the shoulder with a clipboard. Violently.
Returning readers: welcome home.
New cryptids: welcome to the Lunatic Café.
On today’s menu: preparing for a five-day heart monitor.
When the Holidays End but the Chaos Doesn’t
Christmas came and went in the blink of an eye. We had fun. Luna had the time of her life and is still in awe over her gifts. The Yard Yeti continues to wear his slippers everywhere like that’s not a cry for help.
But today’s post is heavier.
Earlier this month, my cardiologist decided the next step is a five-day heart monitor. Which means now that Christmas is over, instead of making fun New Year’s plans, we’re planning how life is going to look with an extra plus one that no one invited.
From December 29th until around January 4th or 5th, we’ll be hosting an unwanted houseguest. One that cannot get wet, cannot be removed, and absolutely does not tolerate being messed with.
What Even Is a Five-Day Heart Monitor?
A multi-day heart monitor continuously records heart rhythm over several days. The goal is to catch irregularities that don’t always show up during short tests and to compare heart activity with symptoms in real time. Dizzy spell? Logged. Palpitations? Logged. Body doing haunted-meat-suit nonsense? Logged.
In theory.
In reality, I don’t know much yet. The paperwork says I’ll be there for about fifteen minutes, and in that time they’ll tell me everything I need to know. Which means I’m heading into this with limited information and a lot of trust. A bold choice, historically speaking.
The Rules of the Unwanted Tagalong
Here’s what I do know:
• I can’t get the monitor wet.
• I can’t remove it.
• I probably can’t adjust it without risking the test.
For five days, I’m expected to live “normally” while pretending I’m not acutely aware of the thing attached to my chest, like that scene in Alien where the creature comes bursting out of someone’s ribcage.
And here’s the part that’s harder to explain on paper.
I don’t sit well.
I don’t stay well.
Funny, you’d think I’d learn as someone training a service dog, but no.
When I’m forced to live in this body for too long, too much pain, too much anxiety, too much of anything, I start plotting my escape. Dishes. Laundry. A speck of dust that may or may not exist. Anything that gets me upright and moving for a minute. Anything that lets my brain outrun my body. Anything that makes me feel real again. Or like a person again.
Five days of enforced stillness is not nothing. It’s not neutral. It’s something I’m bracing for.
And before you remind me of the extensive watchlists M&M and I made on Apple TV, HBO Max, Netflix, Hulu, Paramount+, and every other streaming service we have because it’s cheaper than cable, just know this: sitting still is hard for me.
Even when I’m immersed in a show or a movie, being still for too long hurts.
Eventually, my joints start to scream.
The Hair Situation (And Why It Still Matters)
My first practical concern is my hair.
Yes, really.
My long purple hair is one of my favorite physical features. One of the few things I consistently like about my body as a disabled person. When so much autonomy is negotiated away medically, the things you can still choose start to matter a lot.
Going days without washing it bothers me. More than I want it to.
I have plans. Protective hairstyles like braids, hopefully migraine-friendly. Dry shampoo. Contingencies.
It’s not vanity.
It’s preservation.
MCAS, Adhesive, and Not Believing Reassurance Anymore
The biggest concern is still my Mast Cell Activation Syndrome.
MCAS means my immune system overreacts to things most bodies tolerate just fine. Stress, heat, friction, and especially adhesives are known triggers. When mast cells misfire, reactions can range from itching and hives to swelling and full anaphylaxis.
Adhesive is one of my most reliable triggers.
The office says they have a way of doing this that “won’t hurt me.” I’ve heard that before. So has my skin.
Even emergency rooms claim to have MCAS- or adhesive-allergy-friendly options, right up until I start welting and they apologize while I spend days or weeks nursing my skin back to baseline.
They gave me a test patch. That helps. But five continuous days is a different beast. One I can’t remove or negotiate with.
And yes, I have eight EpiPens in the house.
No, that doesn’t make this less frightening.
What does make it more frightening is not having a car or reliable transportation. If I need medical help, we have to call 911. That means ambulance costs and the risk of being taken to an ER that is, frankly, less than favorable.
They told my mom she didn’t have cancer. A week later she couldn’t breathe, and a different hospital ran the same biopsy and confirmed that she did. They’re the same people who misdiagnosed my leg as a sprained ankle, missing multiple hairline fractures.
These are things you don’t forget.
They are also things that make you stop trusting a hospital.
Sometimes proximity doesn’t make a hospital the best choice.
Especially when they don’t understand your body or your disabilities.
Luna, New Variables, and Watching the Watcher
And then there’s Luna.
Just saying her name in this context makes my chest tighten, which feels ironic given the circumstances.
She is exceptional at her job. Medical alerts are what she does best. Seizures. Migraines. Dizziness. Spasms. Heart rate changes. She catches them before I do.
But this is something she’s never seen before.
I remember being nervous her first time going to the doctor. Not because she’s bad at public access, but because new experiences are hard. She’s still a puppy. She still barks at certain friends she doesn’t see often if they’re tall, unexpected, and she’s off-duty.
That’s not failure.
That’s development.
I trust her. I do.
I just don’t know how she’ll read wires, adhesive, and new routines layered onto a body she knows better than anyone else. I am expecting more alerts. Her telling me she’s smelling “the bads” almost constantly. Helicoptering around me 24/7.
So we’ll move slowly.
Together.
Logistics, Survival Mode, and Getting There
My brother Matt is driving us on the 29th, and I’m hoping we can swing by Trader Joe’s afterward. We’re also planning our weekly food bank trip this Saturday.
Last week, we weren’t able to get an Uber because of the food bank’s location. Learning that drivers wouldn’t pick us up because it operates out of an Interfaith Islamic Temple hurt. Especially when the people there have always treated us with kindness and dignity.
Community shows itself in quiet ways.
And in refusals.
Uber. Do better.
(Want to know more about that, I’ll leave it linked right here.)
Five Days of Intentional Quiet (For Real This Time)
Once the monitor is on, the plan is to keep life small.
Easy dinners. Crockpot meals. Takeout only on New Year’s Eve, as a special treat. Things M&M can handle if I can’t. The goal is to reduce stress, limit movement, and avoid poking the MCAS bear.
Keppra is still here. Still doing Keppra things.
Nausea. Dizziness. Exhaustion. Wild nightmares.
I still haven’t heard back from my neurologist about changing or stopping it.
But I haven’t had any more seizures.
That counts. It really does.
Even so, I’m counting the minutes until Keppra and I can break up for good. I worry these side effects are ruining the holidays for my family. That they’re pulling us apart.
Laundry, Blankets, and the Physics of Being Cold
Before the monitor goes on, we’re trying to get all the sheets and blankets washed.
This sounds reasonable until you learn our bed contains:
• three XXL king-sized blankets
• one heated blanket
• two throw blankets for Luna
Yes, I’m anemic.
Yes, I’m cold all the time.
Yes, I throw all of them off in the middle of the night.
I also sleep with at least three pillows. Disability prep is just extreme laundry with extremely high emotional stakes.
New Year’s Eve, Rewritten
And no, I don’t want this thing in my New Year’s Eve photos.
So, plans are changing. Probably low-key at home. Actually low-key. Takeout and movies if we can convince the Yard Yeti to join us.
Otherwise, it’s takeout and the final episode of Stranger Things. Ever. Saying that still lands like a snare drum to the ribs.
Either way, I’ll be bundled in my Stranger Things blanket hoodie, wrapped up like a Blanket Gremlin™, stationed either in Bed Jail™ or on the couch.
Luna at my side.
Yelling loudly.
As tradition demands.
Greggy, Medical Dramas, and Soft Armor
I’m still deciding if Greggy comes with us on the 29th.
Greggy is a Build-A-Bear M&M and I found at a thrift store. He’s wearing blue doctor scrubs, holding what looks like an X-ray, complete with booties. He’s named after Greg House from House M.D.
When you’re medically complex, you watch medical dramas. Not all of them need to be about doctors having sex in on-call rooms, but somehow Grey’s Anatomy still gets a pass.
Comfort objects are just medical equipment in disguise.
The next couple of weeks are about patience, preparation, and staying as regulated as possible while my heart does its strange little dance on record.
If you’re walking a similar road, restless, wired up, or waiting for answers, you’re not alone in the den.
© The Crippled Cryptid– Disability, honesty, and a little chaos.
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