Content/Trigger Warning: health anxiety, chronic illness challenges, medical device complications, frustration with healthcare systems.
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 is a space 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 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.
Hey friends, happy Saturday. I hope everyone’s doing well. Weather here in Illinois has been chilly at best, and I’ve been using the downtime to tweak the blog a little to get it more fall-friendly. That means going back into things, adjusting a few pages, and updating others.
(Bear’s Obituary & Remembrance Page is officially up!- Let’s be honest though, the perfectionist that I am will probably still go back and add more to it here and there from time to time.)
I’m trying my best to stick to a new posting schedule. I know consistency has been hard since the car accident, but I’m going to do my best- especially with the holidays coming. Seasonal depression is kicking my ass, and between multiple fractures and healing from major trauma… things have been harder than usual.
Here’s the plan moving forward:
• Tuesdays: general life updates
• Every other Wednesday: Folklore Wednesdays (with some extra December posts for Krampus, because let’s face it- it’s that time of year)
• Fridays: Luna updates- the reason why we’re all here
• Saturdays: health updates (yay… sort of. Okay, let’s face it, not at all. Living in this haunted meat-suit that doesn’t follow the rules- mine and or anyone else’s- can be the epitome of exhausting.)
You can also expect floating recipes and the occasional extra post. Plus, I’m trying to be more consistent on Instagram and TikTok. Chaos doesn’t keep itself contained, after all- so why should I?
⚕️ Haunted Hardware & Hospital Phone Tag
First of all, let me start out by saying that I feel like I’m being haunted by my DRG stimulator. I’ll write a full post about my DRG experiences soon. Long story short: it’s been a wild ride with three surgeries, lots of complications, and a whole lot of frustration navigating conflicting information between my pain management team, Abbott, and the MRI team lately.
The DRG was supposed to be removed in March 2024, and it finally was- but sometimes it feels like I’m still haunted by it. Even though I no longer have it (and don’t want it back for anything, given all the complications), the leftover confusion and conflicting instructions make it feel like it’s lingering in the background, messing with my care.
Here’s what happened recently: my pain management doctor told me I should get an MRI for my tibia/fibula/foot. But the MRI team called to cancel, saying they had spoken with Abbott, and Abbott claimed I couldn’t have the MRI because some DRG parts had allegedly been left behind inside of my body.
Confused? Me too. Especially since it was removed in March of 2024.
I called the doctor’s office- no call back. I messaged again, this time through the patient portal, and an RN told me the MRI team shouldn’t have contacted Abbott in the first place and that I was fine to schedule the MRI.
I feel like I did what any reasonable person would do. First: I asked why Abbott would tell the MRI team I had leftover parts in my body that could critically injure me in the machine if there weren’t any. Second: I asked the doctor’s office to schedule this test for me since they ordered it. That way, if questions came up, the MRI team could talk directly to them instead of playing phone tag with someone who doesn’t call back anyway.
But of course, I was told no- that I should schedule it myself, and to have the MRI team call them with any questions.
So here I am, still waiting for a proper scan- MRI or CT- so I can actually heal my leg fractures safely. But every time I think about it, it’s like the DRG is still there, poking around, reminding me of how messy and chaotic this process has been.
🩺 Boots, Bones, & Bad Biomechanics
Until then, normal socks and shoes are out.
Right foot: okay.
Left foot: trapped in a BREG boot.
Air casts and walking boots… they’re great for support, but they are not built for comfort, warmth, or style. Cold? Yep. Uncomfortable? Also yep. Not even bringing fashion into this because sweater boots and combat boots are my jam anyway.
I already have limited mobility in my left leg, and adding a BREG boot limits my ankle, foot, and knee… plus extra weight and pressure on my hip with Ehlers-Danlos Syndrome. It’s just here for a bad time (and probably a long time).
(And yes, if you’re wondering- I already lost track of how many times my hip has subluxed over this BS.)
✚ MCAS Meltdowns & Missing Support Systems
On Monday, I’ll finally be getting my Xolair shots again after over a month off them. If you know me, you know this is huge. I would tell you that my MCAS has been a monster lately, but honestly- when is it anything but a monster?
I’ve had to avoid malls, certain Walmarts, and other specific stores for years- all because I’m terrified of running across a perfume counter and getting lit up like Christmas to the point where I’ll need to be dragged to the ER. But I’m going to say it anyway: MCAS has been a monster lately, and being off shots has been terrifying.
Living in a body with MCAS is exhausting- especially mine. I can, and often will, react to almost anything at any time. And being in a rural area without reliable transportation makes everything feel like a minefield.
And before anyone asks; yes, I have epi-pens. But even with those, I would need to go to the ER directly afterwards for a serious reaction. So that would mean either hopping in an ambulance and having no way back home, or hoping that an Uber would be willing to actually pick me up- since they don’t all run 24 hours, they see the rides before they take them, and if they decide that yours isn’t worth it, you’re SOL.
Anxiety city, right?
And on top of all that:
Living with chronic illness, limited mobility, and no nearby support system can be deeply isolating.
Many disabled folks- not just women, though women often face this in unique and amplified ways- struggle with the reality of being left to navigate medical chaos alone. So many of us are separated from family, or have family who can’t help, or we simply don’t have local people we can rely on for rides, emergency support, or even just company for the hard stuff.
It’s one of the most unspoken parts of disability:
how much of this we end up handling alone, not because we want to, but because we don’t have a choice.
And I want everyone reading to know- whether you’re disabled yourself, chronically ill, neurodivergent, mentally ill, or some messy combination- you’re not alone in feeling that ache for a support system you don’t have access to. That loneliness is real. And it deserves to be acknowledged.
(I’m lucky, my aunt sends Uber Cash to my account when and where she can but, it only stretches so far sometimes, even when used sparingly.)
⚕️ Everyday Joys (Because We Need Them)
Even with all this medical chaos, there are small sparks of joy: cozy socks, Luna snoring on my feet, homemade mac and cheese last night, and “food bank roulette” tonight- where we make dinner with whatever ingredients we snag from the food pantry. It’s honestly one of my favorite little traditions.
Fun fact: we’ve scored some wild ingredients from the food bank before, like Buddha’s Hand citrus.
So, here’s to trying to stay warm, hydrated, and fed this weekend. Pull your blanket close, pour a warm drink, and remember it’s okay to have messy, chaotic days. We’re doing our best, and that’s enough.
-Sky, The Crippled Cryptid
Written with coffee in one hand, and Luna snoring somewhere nearby.
© The Crippled Cryptid- Disability, honesty, and a little chaos.
https://linktr.ee/skylanarissa
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