When your body is already complicated, sometimes the hardest part isn’t the illness. It’s being believed about it.
Content note: This post discusses chronic illness, disability, medical trauma, hospital visits, migraines, POTS, MCAS, anaphylaxis, hives, medication reactions, surgery, wound care, and difficult experiences with healthcare providers.
There is some graphic medical detail. Please check in with yourself before reading. You are always allowed to skip a post and come back another day.
š©ŗ Welcome to 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.
Some weeks are mostly dog hair, questionable snacks, and me trying to convince myself that I am, in fact, supposed to be resting.
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.
Former unwilling amateur cyborg.
Occasional chronic illness and disability advocate.
Mama of two wildly loved dogs.
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.
At least, I’m pretty sure that’s what most people would call coping.
š The Usual Cast of Characters
Most days are lived in a haunted meat suit with a questionable warranty and a longstanding feud with my nervous system.
I spend a lot of time in Bed Jailā¢, but I’m rarely alone.
There’s 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, having a spirit guide with teeth is probably a pretty good idea.
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 when my body decides to startle everyone.
She gives the 90% when I only have 10%.
She reminds me that survival is still a team effort.
Sometimes, she also brings the “Tabarnak de colis” if weāre having a bad day.
And then there’s BlitzĆø.
Currently twelve weeks old and composed primarily of elbows, knees, ears, oversized puppy paws, and questionable decision-making.
He’s learning.
I can’t promise you he’s going to be a service dog someday.
Hell, some days I’m not sure if he’s a dog, a potato, or a small spotted menace.
Currently, we’re going with menace who refuses to stop using his water bowl as a swimming pool.
But that’s neither here nor there.
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 CafƩ.
š§ļø Living in the Shadow of the Migraine Demon
Life has been a lot of things lately.
Most of all, when I’m not chasing after a twelve-week-old puppy, I’ve been healing from a foraminotomy. Which was officially 6-weeks ago.
And aside from that?
Migraines.
Lots of migraines.
I don’t know what I did to apparently earn a permanent residency in the shadow of the migraine demon, but here we are.
Part of me is pretty sure I know what has been stirring things up, though.
The weather has been absolutely ridiculous.
Constantly changing.
Especially yesterday.
Friday decided to put on an entire atmospheric performance.
I got up around 10 AM to pick up my prescriptions from the pharmacy and grab a Christmas tree someone was giving away.
Yes.
A Christmas tree.
In August.
Because this year I would really like to avoid cussing out the Christmas tree we’ve had since 2001.
Priorities.
When I left the house, it was a little overcast.
Fine.
Manageable.
Then I got to the pharmacy.
It started raining.
As I kept going, the rain got harder and harder, and I almost considered pulling over more than once.
If I’d been driving the older Jeep, I might have.
But the new one has new tires.
The brakes are good.
The headlights are LED and cut through rain and fog like nothing else.
So, visibility wasn’t really the problem.
The weather was.
Even after stopping at the grocery store, the rain kept getting worse.
By the time I got home, it was still absolutely pouring.
We got everything put away.
We took the dogs outside to potty, begrudgingly, because apparently rain is offensive to both of them.
And then I sat down at the back table to watch the dogs and get some writing done while M&M took a shower.
And the sun came out.
Just like that.
Because apparently Illinois weather has decided that consistency is for cowards.
And somewhere in all of that atmospheric nonsense, my migraine demon apparently clocked in for another shift.
š©ŗ And Then There’s the Cardiologist
Before we get into Monday, there’s one other little piece of the healthcare puzzle that probably deserves mentioning.
My cardiologist isn’t worried.
And apparently, in his opinion, POTS is the latest TikTok trend that “kids these days” use to feel special.
His words.
Not mine.
So, I guess we’re just vibing.
While also looking for a new cardiologist.
Don’t worry.
I’m not exactly planning to make “trust your doctor blindly” the theme of this blog.
Especially when the doctor in question seems to think my nervous system discovered TikTok before it discovered basic physiology.
It doesnāt matter to him that the Apple Watch on my wrist constantly alerts to high and low heart rate, or that Luna does the same thing. Evidence doesnāt seem to show up to this party. Just his ego.
Oh well, I guess that just makes it an average day?
š©¹ When Monday Decided to Be the Problem
But honestly?
The most frustrating part of this week wasn’t Friday.
It was Monday.
Normally, I actually like Mondays.
Which is probably surprising, considering how much the average person seems to resent them.
Around here, Mondays usually mean coffee for me and pup cup in a can for the dogs.
A tiny ritual.
A little bribery.
Everybody survives.
This Monday was supposed to be my Xolair day.
I was supposed to get my shots for MCAS, see my favorite nurse in the entire world, and have my regular allergist appointment.
Most of my appointments are just shots.
But every few months, I need to see the doctor too.
This was one of those months.
And then, completely out of the blue, he brought up a pill he thinks might work better for me than Xolair.
Because last month I had my foraminotomy.
And that is where things get complicated.
š„ When the Chart Says One Thing and Reality Says Another
During the anesthesia and recovery process surrounding my surgery, I was given several medications that I have documented problems with.
Fentanyl was one of them.
It is in my chart.
It is something I have a problem with.
And I was given it anyway. Before anyone says anything about how I should have spoken up, I only know this because it was in my post-op notes. It was given to me when I was already knocked out and under anesthesia.
I was also given hydrocodone after surgery in recovery and was offered it as a take-home medication, despite knowing that my body and my MCAS do not tolerate it well.
Then there was the skin preparation and dressing situation.
And this one?
I can’t entirely blame the hospital for needing to do what hospitals need to do.
When you’re having surgery, you need to be cleaned.
You need to be covered.
You need your surgical site protected.
I understand that.
What I don’t understand is how something I specifically called about, advocated for, and triple-checked still didn’t happen.
I had specifically asked that they use the skin-safe version of Tegaderm.
I had specifically asked that they not use Betadine on me.
They used the non-skin-safe Tegaderm.
And they used Betadine from the back of my neck, down past my buttcrack, and all the way to the backs of my knees.
No, Iām not an owl. I cannot spin my head 360-degrees and see behind me. But M&M saw it, took a photo, and showed me.
Sorry if that’s TMI.
But this is a chronic illness blog.
And anyone who has been around for the Saturday Health Updates knows that sometimes Saturday gets a little graphic.
Bodies are weird.
Healthcare is weird.
Sometimes the details matter.
š Then the Yellowjacket Happened
A week later, the puppy came home.
I asked in a free local group if anyone had extra puppy supplies they didn’t need or want anymore.
Someone absolutely blessed us with a mountain of stuff.
Some of it we could use.
Some of it we’re still trying to pass along to someone else because there are things I simply won’t use in this household.
Prong collars and choke chains, for example.
Those are getting re-homed.
Unfortunately, while I was trying to do a good thing and get the puppy supplied, a yellowjacket decided my left arm looked like a five-star landing pad.
And then it stung the absolute shit out of me.
Which meant that the methylprednisolone pack I had just finished after surgery?
I needed another one.
So, my doctor prescribed another one.
And somehow, on Monday, even after going over all of the things that had contributed to a genuinely awful month, we still ended up having a conversation about whether I should stop Xolair.
Which brings me to the part of this story that I really need you to understand.
š Twenty Years of Xolair
Because Xolair isn’t just some medication that appeared on my chart a few years ago.
It has been part of my life for almost twenty years.
My relationship with this medication started long before I was old enough to understand what was happening to my body.
The first time I went into anaphylactic shock, I was ten years old.
I was in seventh grade.
It was an entirely average day.
I went to gym class.
And suddenly, I couldn’t breathe.
I went to the office and told them exactly that:
I can’t breathe.
My mom made the roughly ten-minute drive to my school in less than four minutes.
She beat the ambulance.
The ambulance was five streets away.
And at that point?
We didn’t even know what I was allergic to.
We didn’t know what was happening.
We just knew something was very, very wrong.
šļø The Red Crayon Years
It took us two years to find an allergist who actually believed there was something wrong with me.
Two years.
For a while, my mom and I joked that I must have been walking around with a red crayon in my back pocket.
Every time something slightly inconvenienced me, apparently, I’d just whip out my imaginary crayon and draw hives all over myself to get out of whatever I didn’t want to do.
Because apparently that was the explanation.
And that was just who my mom was.
She used humor because the alternative was probably screaming.
We tried Zyrtec.
We tried so many allergy medications that I couldn’t tell you all of them without digging through twenty years of medical history.
We tried Benadryl.
Because apparently you can’t break out in hives when you’re unconscious.
Or at least, that’s how we rationalized it.
Eventually, we made our way to Children’s Hospital in Milwaukee.
And that’s where we found Dr. Chiu.
She believed me.
She believed my mom.
Because she had the exact same condition.
And she put me into the Xolair drug trial for kids.
That meant driving roughly two hours into Wisconsin for appointments.
Then sitting there for another three hours.
Five hours.
Every appointment.
For a kid.
For years.
But we did it.
Because something was finally helping.
š And Then There Was Xolair
When I turned eighteen and my insurance changed, I couldn’t continue seeing the pediatric team in Milwaukee.
I needed to find a doctor in Illinois.
And for years, my current allergist was that doctor.
He was the doctor who continued the treatment.
The doctor who knew my history.
The doctor who knew how long I had been on Xolair.
The doctor who knew what my body looked like without it.
And that’s why Monday hurt as much as it did.
Because this isn’t a new medication.
This isn’t me being emotionally attached to something because I’ve convinced myself it works.
We’ve tried this.
We’ve actually tried stopping Xolair.
We’ve tried spacing it out.
We’ve tried seeing what happens when my body doesn’t get the same level of treatment.
And every time?
My quality of life gets worse.
And worse.
And worse.
Before Xolair, going from an air-conditioned house into the summer heat could cause anaphylaxis.
Going from a hot shower into a room-temperature room could cause hives.
The medication hasn’t magically made me stop having MCAS.
It isn’t a cure.
It isn’t a force field.
I still have breakthrough symptoms.
Sometimes they’re related to where I am in my monthly cycle.
Sometimes they’re related to where I am in my Xolair cycle.
Sometimes my body simply decides that today is a great day to remind me that I live in a haunted meat suit.
But there is a difference between having breakthrough symptoms while receiving treatment and going without the treatment that has helped keep those symptoms manageable.
I’ve spent more than twenty years learning how to live in this body.
We’ve learned my triggers.
We’ve learned my patterns.
We’ve learned what happens when we push too far.
We’ve learned what happens when treatment gets delayed.
And Xolair has been a huge part of that.
So, when my allergist brought up taking me off of it after what has been an objectively awful month, I had to push back.
Because this wasn’t just a bad month of hives.
This was a month that included a major surgery.
Medications my body doesn’t tolerate well.
A surgical skin-prep and dressing situation that went against precautions I had specifically advocated for.
Another round of steroids after a yellowjacket sting.
Weather swinging wildly enough to aggravate my migraines.
And a nervous system that has already been through the wringer.
Of course, my body had a bad month.
It’s been having a bad fucking month.
And somehow, the answer I was being asked to consider was whether we should remove one of the longest-standing pieces of my treatment plan.
After we’ve already tried reducing it.
After we’ve already tried stopping it.
After we’ve already seen what happens to my quality of life when we do.
That’s the part I can’t just quietly nod along with.
š©ŗ This Is Where I Draw the Line
I’m not saying that doctors can never change treatment plans.
Of course they can.
Medicine changes.
Bodies change.
Treatments change.
Sometimes a medication stops working.
Sometimes the risks change.
Sometimes there genuinely is a better option.
If there is a compelling medical reason to reconsider Xolair, I am willing to have that conversation.
But “let’s try something else” is not the same conversation when the something else means giving up a treatment that has been helping me for nearly twenty years.
Especially when we’ve already learned what happens when my body doesn’t have it.
I am allowed to ask why.
I am allowed to want evidence.
I am allowed to explain what has happened in the past.
I am allowed to say that I don’t think this is a good idea.
And I am allowed to find another allergist if I no longer feel like my current one is the right person to manage this part of my care.
Because this isn’t about refusing medical care.
It’s about participating in my own care.
It’s about informed consent.
It’s about knowing my own history.
And it’s about recognizing that a medication can be more than a line on a medication list.
For me, Xolair represents nearly twenty years of treatment.
Nearly twenty years of learning.
Nearly twenty years of trying to make this body a little less hostile to the person living inside it.
So yes.
I’m upset.
I’m frustrated.
And I’m probably a little angry.
Because after spending two years as a kid trying to convince someone that something was wrong, after finding a doctor who finally believed me, after spending five hours at a time traveling to Milwaukee for a drug trial, after building an entire adult treatment plan around what we’ve learned since then…
I don’t think asking me to casually throw away twenty years of progress is a reasonable thing to ask.
Not without a damn good reason.
And if that means I need to find a new allergist who is willing to have that conversation with me instead of making the decision feel like something that’s simply happening to me?
Then maybe that’s what I need to do.
Because sometimes, it’s things like this that make loyal patients leave good doctors.
Not because they suddenly hate them.
Not because they don’t appreciate the years of care.
But because eventually, trust starts to crack.
And when you’re the person who has to live inside the consequences of that decision?
You need your doctor to understand why that matters.
š¤ If You’re Here, You Belong Here
If something in this post hit close to home, you’re not alone.
If you’ve ever had to explain your own body to someone who was supposed to be listening to you, I see you.
If you’ve ever had a medication questioned after years of stability, I see you.
If you’ve ever walked into an appointment already knowing your own history and walked out wondering whether anyone actually heard it, I see you.
And if none of this applies to you?
That’s okay too.
You don’t have to have the same illnesses.
You don’t have to understand every medication.
You don’t have to have the right words.
You don’t even have to stay for every post.
You don’t have to earn your place here.
Welcome to the Lunatic CafƩ.
ā Your Lunatic CafĆ© Check-In
Before you go, here’s your soft little reminder from the Lunatic CafĆ©:
Take your meds if it’s time.
Drink some water.
Eat something small, even if it’s only a few bites.
Rest if your body is asking for it.
And no gold stars required.
Just a reminder from one haunted meat suit to another:
You are allowed to take care of yourself without turning it into a performance.
-Sky
Ā© The Crippled Cryptid
Disability. Honesty. Survival without the performance.
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