Content/Trigger Warning:
This post includes discussion of fainting, seizures, medical trauma, hospital testing, medical miscommunication/gaslighting, chronic illness, and fear around sudden health instability. Please take care of yourself while reading.
Welcome back to The Crippled Cryptid–
A cozy corner of the internet where disability, chronic illness, service dogs, and everyday magic all sit at the same table. This space is built on honesty, humor, advocacy, and the beautifully chaotic reality of living in a haunted meat-suit that doesn’t always cooperate.
Whether you’re here for education, solidarity, or just a safe place to set your bones down and breathe, I’m glad you found your way back. Pull up a chair, grab something warm, and let’s dive in together.
I’m going to be honest from the jump: the only reason I’m even upright right now is because Luna the Service Dingo™ keeps glaring at me like I’m committing crimes against rest, M&M is fluttering around me like an overprotective mother hen, and the Yard Yeti- the younger brother, mind you- is acting like he’s been promoted to my handler.
But I wanted to get this update written, because things have been… a lot.
A Wednesday Morning That Went Sideways
If you follow me on TikTok or keep up with the blog, none of this will surprise you. But Wednesday morning, while running errands without M&M or Luna (yes, yes, I can hear the collective groan), I passed out and had a seizure.
This is not something that happens to me.
And it was terrifying.
I remember walking through a doorway. I don’t know what I was thinking about. Honestly, I barely remember anything from the five minutes before it happened. One second, I was upright and moving- the next, I was on the ground, vision blurry, brain rebooting like a Windows 98 machine.
A man- who I later found out was a nurse- was shouting, “She’s having a seizure!” and telling someone to call rescue. A woman knelt beside me and stayed there until EMS arrived.
From the little I remember, they were both incredibly kind.
Once I was in the ambulance, EMS checked everything: blood sugar, blood pressure, vitals. Then they decided to take me to the hospital, where I spent the rest of the day being poked, scanned, questioned, and generally treated like a medical mystery.
Matt brought M&M to be with me and stayed nearby so he could drive us home. They ran:
- Blood tests
- An ECG
- A CAT scan
- The standard “drugs or pregnancy?” urine test
- Basically, everything except answers
The results?
No bleeding. No swelling. No masses.
Good news… but also frustrating news.
Because we still don’t know why it happened, or if it’s going to happen again.
Whoever told you “no news is good news” never lived in a chronically ill body.
The Aftermath: My Body Said “Hard Reset” and Then Hit Me Again
Since Wednesday, I’ve been dealing with:
- Light sensitivity
- Brain fog
- Nausea
- Fatigue
- Anxiety (because… yeah)
- Muscle aches
- Migraines
It’s like my body hit “Hard Reset” and then said, “Oh no sweetie, I’m not done,” and threw more symptoms at me like it was loading a DLC of suffering. But I have Luna, and she’s been catching everything, like the Best Girl™ she is.
Trying to Find Answers (or Someone to Pick Up the Phone)
Since Thursday afternoon, I’ve been trying- unsuccessfully- to reach my neurologist.
I also need to get in with the cardiologist they referred me to, because something on the ECG apparently raised enough eyebrows to get me a quick referral.
People don’t just pass out and seize out of nowhere.
Something caused this.
Something is off.
And I’m stuck in voicemail limbo waiting for an adultier adult to call me back.
Thursday Was Supposed to Be “Rest,” Apparently
I tried.
I genuinely tried.
I stayed in bed until almost noon, which for me is unheard of.
But the Yard Yeti’s birthday was Friday the 5th, and I refused to be the reason this man doesn’t get his yearly Hershey Pie. He doesn’t do cake- he’s a weirdo like that- so I make him this oddly specific pie every year. It’s tradition.
Birthday pie and casserole.
Chronic illness is a 24/7 job, but I could sacrifice a couple hours for him.
So, Matt drove us to the store for ingredients. Luna supervised the cooking with judgment in every huff of her tiny velociraptor lungs. We also made Twix Pudding for the first time because B loves Twix- and for the record? It would make an elite dip for green apples.
(But don’t mind me. I’m used to being accused of losing my mind.)
And Speaking of Losing My Mind: The DRG Saga Rises From the Dead
Remember a couple weeks ago when I complained about medical incompetence?
Guess what’s happening again.
While at Woodman’s- in a wheelchair, because M&M refuses to let me walk much since the seizure- I got another call saying that DRG components might still be in my body. The same DRG that should have been removed on 3/11/24.
According to the MRI coordinator, the surgeon’s notes indicate that pieces remain.
According to the surgeon’s office, nothing is left.
So, someone is lying.
Or incompetent.
Or both.
The MRI department has no reason to lie.
The surgeon’s office…
Let’s just say they’ve given me plenty of reasons not to trust them.
It took ten full minutes of arguing with the MRI tech to keep her from canceling my MRI for this Sunday (the 7th). I told her to either walk down the hall to the pain management office and confirm in person or call them.
Now, I know what some of you may be thinking- that I sound difficult. But let me remind you:
When I first tried to reschedule this MRI, the doctor’s RN (Jessica- we do not like her) insisted there was absolutely no DRG left in me and that I could “just call and make a new appointment.” As if it’s that easy. As if appointments and transportation magically appear. Like they just grow on trees. As if Ubers aren’t legally and logistically a nightmare with a walker and a service dog.
Her apologies were half-baked at best. Meanwhile, I’m walking around on untreated fractures waiting for the imaging that will let doctors decide how to actually help me. The walker helps keep some pressure off of my foot and leg when I use it, and the BREG boot cushions it a little but, in no way is it a solid fix. -letting fractures heal the wrong way for months is how I developed CRPS in the first place.
So no- I wasn’t the problem here.
Honestly? I almost felt bad for the MRI tech.
If she has to call Jessica regularly, I wouldn’t want to make that phone call either.
Regardless, I need this MRI.
Especially after fainting and seizing.
The ER bloodwork didn’t explain anything.
My neurologist is going to want updated imaging.
Something has to make sense.
Something has to give.
At least you would think so but, no.
Friday, B’s birthday before pie and his birthday dinner M&M and I Ubered to Condell for an x-ray where I found out that the doctor had left DRG “contacts” made of platinum meridian in my lumbar spine despite earlier telling me they hadn’t left anything behind.
Veronica and I met face to face.
I’m not saying she wanted to but, that is what happened. I got out of x-ray and M&M said that I’d gotten a phone call, when I checked my phone I saw that it was the hospital and I called back immediately. She told me who she was and that she was needing to cancel the MRI for Sunday, and I panicked.
I wanted to know if there was anything I could do to hold onto this appointment. I took an Uber on my little brother’s birthday, damn it, to get this test to ensure I’d be good to go… but once she gave me all the facts it was clear I wouldn’t be having my MRI on Sunday. There’d be no way. Because by the time I made it home the x-ray results were available in the portal, and there it was in black and white… they left metal in my body.
I am not MRI compatible meaning that I don’t know how we’re going to proceed with treatment for seizures and passing out.
Closing Thoughts from My Onesie Cocoon
So that’s where we are this Saturday.
A little scared.
A little frustrated.
Very exhausted.
But wrapped in love, support, and one very opinionated service dingo who snores like a tiny jet engine beside me.
I don’t know what’s coming next, but I’ll keep you all updated as best I can. Thank you for reading, for sharing space with me, and for caring enough to check in. It means more than you know.
Written with coffee to my left, wrapped in my Nightmare Before Christmas onesie, and Luna rumbling softly beside me.
© The Crippled Cryptid– Disability, honesty, and a little chaos.
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