disability – Schpilkes The Blog

Bruised, Busy and Still Standing

I took a day off from everything today. Well, almost everything.

Yesterday my day was hectic. I woke up at 6:30am — walked the dog, dropped the Passenger Prince at his doctor’s appointment, ran to get my blood test, ran back to pick up the Passenger Prince from his doctor’s appointment, and drove him to work.

All this before 9am and before my coffee.
All this after I got bitten by a dog on my morning walk, all this with a big nasty bruise on my non–model-worthy leg.

A lady with a new dog approached us this morning and told us how friendly her dog was and let it get closer to us. Turns out her dog was not so friendly, and my Airedale decided to protect me. I ended up between the dogs — and I got hurt.

I called my mom on my drive from dropping the prince at work. I was told to put a cabbage leaf on my leg. Sadly, the only cabbage we had was already in the soup, and there were no extra leaves around for my leg.

My long day continued with going to work. At work I Scotch-taped an ice pack to my swollen leg and got home past 9pm.
Dog walk again, shower, and two painkillers later — I was dead asleep.

So today, I took the day off from everything. Well, almost everything. I still woke up, took the dog on a walk, drove the prince to work, and did laundry.
My leg has all sorts of rainbow colors now, and apparently my non-existent leg modeling career is over.

So yes, I took the day off — if you ignore the walking, driving, and laundry. My leg is now a masterpiece of purples and greens, and my modeling career is officially over before it began. Maybe tomorrow I’ll rest for real… or maybe I’ll just buy a cabbage. 🥬

How to Shower Wrong: A Tired Person’s Guide

Or Waterproof? Asking for My Hearing Aids.

The unthinkable happened this weekend — I forgot to take my hearing aids off before getting into the shower. First time ever in five years that this has happened to me.

Hearing aids are expensive. These were my first pair, the ones I got when I first lost my hearing, and they were very expensive. Back then, we had great insurance that covered the full cost of a top-of-the-line pair. That was several insurance companies ago.

Ever since then, I’ve dreaded getting them wet or breaking them. They’re my lifeline. Usually, the first thing I do before stepping into the shower is touch my ears to make sure they’re out.

But today, I forgot.

I was tired — I hadn’t been sleeping well for the last couple of nights. The Passenger Prince had to do a 72-hour at-home EEG study, which meant a camera was set up on him at night. The camera had night vision, and that little light kept waking me up. I like complete darkness when I sleep. I thought about crashing in my home office but decided against it for the sake of comfort. Comfort that completely escaped me this weekend.

My Passenger Prince, who on a normal day would enjoy me running out of the shower naked, was not thrilled with my sprint this time. As soon as I noticed my aids still in my ears, I bolted out of the shower to dry them off — dripping water all over the bathroom and the laminate floor in our bathroom.

Maybe tonight I’ll finally sleep.

My life in the driver seat

Our lives changed this year — some for the better, some for the worse. We got a rescue dog. Our middle daughter got married. We gained a son-in-law and a new grand-dog. There were joyful events, stressful ones, and then… there was the moment now forever known as The Great Costco Seizure.

It happened back in August. My significant other — now referred to as the Passenger Prince — had a seizure. Somewhere between the BBQ chicken and the sushi display. I had sent him in to get dog food. He had other plans.

After a seizure, you’re not allowed to drive until a doctor clears you. That takes time — tests galore, appointments galore. And when you’re a two-working-adult household, it also means rearranging schedules, adapting routines, and me stepping into my new role as Warrior Princess — chauffeur, scheduler, and snack-bringer — while he became the ever-regal Passenger Prince.

Some days with the Prince are better than most. We have great conversations… and some less-than-great ones. Lucky for him, he now has me hostage every morning when I take him to work. I get to hear all about investments, the Fidelity and Vanguard accounts, and market fluctuations — again. These are topics we’ve already covered many times, but now, trapped in the car, I get the deluxe version. Normally, I can turn off my hearing aids. But when I’m driving, unfortunately, I need my hands.

Some days are less charming. Yesterday, we went to the dentist together for a couples’ teeth-cleaning date. This morning, I was the driver to the blood test appointment. I was told exactly where to park — which I ignored — and waited in the car while juggling work calls.

He came out with a plain bandage. Apparently, there are no dinosaur-themed bandages for adults.

At this point, I’m seriously considering getting us matching track suits. Warrior Princess and Passenger Prince. Maybe then — just maybe — my life will be complete.

Conversations from the Driver’s Seat

My life as a driver continues—although I got a break yesterday, as my husband had a friend take him to work. That gave me the rare opportunity to sleep in. Well, to “sleep in” until 7:20 a.m., when Shuki, the family dog, decided I’d slept enough.

I needed a driving break—not because driving itself was the problem, but because someone at work decided to stick an early meeting on my calendar. A meeting I couldn’t take from the car because, of course, they needed to see my face.

Not all meetings are productive. This one definitely wasn’t. Not due to lack of preparation or context, but because of the participants.

When we’re faced with change—professional or personal—we’re not always open to it. There’s fear involved: fear of leaving our comfort zones and confronting challenges that force us to adapt. I couldn’t quite understand the strong reaction in that meeting. I saw the big picture. I had already been part of the transition being discussed. So I was surprised by the resistance.

Back in the driver’s seat today, I shared all of this with my husband. He offered a perspective I hadn’t considered: that people often resist change not because they don’t understand it, but because they’re afraid—afraid of having to learn new things, of stepping into unfamiliar roles, of failing.

Driving still isn’t something I enjoy. I much prefer my “passenger princess” role. We’re still waiting on his medical test results, which is why I’ve taken on this new morning routine. But these forced drives have brought one unexpected benefit: the chance to talk. With our opposing work schedules, we rarely get that during the week.

I still get annoyed when he tells me how to drive. But I do appreciate these small, quiet moments we share together.

Puzzling Through BS and RBBB: A (Dark) Humor Guide to Medical After‑Notes

Years ago, when texting was just taking off, I had to teach myself all the lingo—the endless shortcuts, acronyms, and cryptic abbreviations. These days, I find myself learning a brand‑new vocabulary: medical lingo.

I’m not planning to enter the healthcare field anytime soon—this is purely by necessity. My husband had a seizure—at a Costco, of all places—and was rushed by ambulance to the emergency room. A week and a half later, we saw a neurologist, scheduled all the necessary tests, and began collecting the “after‑notes.” After‑notes from the paramedics, from the ER, from the first doctor’s appointment… and I’m bracing myself for more after‑notes from the MRI and EEG.

These after‑notes feel like military orders—packed with shortcuts and initials. Thankfully, I did serve in the military, and I love puzzles. So here I am: deciphering, decoding, trying to understand what happened and what everything means.

Here are a few of the gems I’ve already cracked:

BS — not “bullshit,” not “bachelor of science”—it’s blood sugar.
BIBA — not a Honda model—brought in by ambulance.
NSR — not some sinister government agency—it’s normal sinus rhythm.
ED — not the embarrassing kind—it’s emergency department.
Hx — not a TV channel—it’s history.
RBBB — not about bananas—it’s right bundle branch block.

We’re taking this all very seriously, don’t get me wrong. We’re still waiting for more test results, and until we have clear answers, the dark humor is just part of how we cope. I’m looking forward to meeting the next batch of acronyms with the same dry wit.

Maybe I should launch a TikTok channel just for this: “Medical Lingo Decoded: Episode 1.”

Even Iron Breaks

My mom called me an Iron Lady this week.
I come from a long line of strong Iron Ladies — not by choice, but by necessity and circumstance.

It’s been a tough week: an ER visit, a mountain of doctor’s appointments and medical procedures, all while still working and trying desperately to manage everything else around me.

Restful sleep? Not an option. I woke up every hour to make sure my other half was okay.

The house looks like Pompeii — everything is exactly the way it was when I got the call that he was taken to the emergency room. Frozen in place: the dishes, the kitchen counter, and most of the house.

I’ve been functioning on a need-only basis, literally running on fumes.

And today, it finally hit me: I’m tired. I’m exhausted — physically and emotionally.

I told my mom, “Even iron corrodes and breaks. Sure, it’s strong, but it doesn’t have limitless power.”

I also joked, “I probably need some WD-40 at this point,” and she laughed.

But truthfully?
I don’t want to be an Iron Lady.
I want to cry. I want to scream. I want to be angry.

But I can’t.
At least, not right now.

Late to Class, Right on Time for Perspective

Late to Class, Right on Time for Perspective

I was almost late to my Pilates class the other day. I like to get there early to grab my favorite reformer—it’s perfectly positioned under the air conditioning and to the right side of the room, which works best for my non-functioning ear. (I’m 98% deaf in my left ear, but let’s be honest—98%, 100%, it’s all the same. I hear nothing.)

But alas, I was distracted and arrived just a minute before class started. My usual spot was taken, and I ended up in the back, squeezed between two other reformers. Not ideal. But class was great regardless, and I was happy I made it.

There’s a nice mix of women in the class—some younger, some older. Some wear those perfectly coordinated Pilates-girlie sets, others show up in whatever they grabbed from their closet that morning. I usually fall into the latter camp. That day was no different.

I admire the cute outfits, but I rarely wear them. They don’t work well for my body. I was born with Spina Bifida, and it’s visible if I wear low-rise pants or crop tops. It looks like a belly button on my back—I’m used to it, but other people, not so much.

Over the years, I’ve been poked, prodded, and asked more questions than I can count. Most people are just curious and mean no harm, but sometimes the questions are too much. So, I often opt for clothes that cover it all up. It’s not just about comfort—it’s about avoiding attention, avoiding questions.

My reformer choice is also influenced by who ends up next to me. If I’m not early enough to choose my spot, I sometimes spend half the class adjusting my shirt to keep my lower back covered. That morning was no different—I kept tugging at my top between movements, trying to stay hidden.

But then, somewhere mid-class, I looked around. Both women beside me were completely focused on their own breath, their own bodies. Not looking at me. Not noticing my back. Not thinking twice.

And it hit me—maybe it’s me. Maybe I’ve been the one too self-conscious all this time. Maybe I’ve spent fifty-plus years worried about exposing something no one is actually paying attention to. I’ve avoided cute outfits, backless tops, anything that might show “too much,” thinking it would invite questions or judgment. But what if it wouldn’t? What if people are more focused on their own stuff—just like I am?

So maybe next time, I won’t worry so much about the reformer, or the waistband of my pants, or who might be glancing at my back. Maybe I’ll wear the outfit I’ve always liked but always avoided. Maybe I’ll let myself breathe a little easier, like the women on either side of me did—focused on their own journey, not mine.

Because the truth is, no one’s looking as hard as I think they are. And even if they are, maybe it’s time I stop hiding the parts of me that have carried me through life so powerfully. Spina Bifida, a late arrival, a back-row reformer—they’re all part of the story, but none of them get to define the joy I feel when I show up fully, as I am.

Maybe showing up is the cute outfit after all.

Broken Hearing Aid? Worse—A Broken Ear

The Only Thing Scarier Than a Broken Hearing Aid

There is nothing more frightening to a hearing aid wearer than a broken hearing aid—or so I thought.

Yesterday, I had severe issues with my hearing aid. I couldn’t hear anything in my left ear. I kept adjusting the settings, raising and lowering the volume. I deleted the app on my phone, reinstalled it—nothing worked.

When my hearing aid doesn’t function, I can always tell. Besides the obvious issue of not being able to hear, my tinnitus gets noticeably worse.

I tried everything: turned the hearing aid off and on, charged it fully, even put in my old hearing aid. That’s when I realized—it wasn’t the hearing aid that was broken. It was my ear.

I had lost all hearing in my left ear.

And that is even scarier than a malfunctioning device. A hearing aid can be fixed. A non-functioning ear? That’s a different issue altogether. Sometimes, even the best technology money can buy isn’t enough.

After that realization, I made an urgent phone call to my audiologist and scheduled a dreaded appointment. Then, I made the mistake of checking with Dr. Google—and that was not a good idea. Dr. Google is very scary.

Work today was a challenge. Not being able to converse or understand what people are saying to you is incredibly isolating. But my coworkers were understanding. They adapted things so I could still work, and I really appreciated that.

Today was not a good day.
I hope tomorrow will be better.

#hearingloss #brokenhearingaid #toughday #phonak

Hearing Aids, Stigma, and My Story

I had an interesting conversation with my mother the other day. She told me about a friend she met for coffee, who mentioned that her husband refuses to wear hearing aids. Apparently, his doctor told him that wearing hearing aids would hurt his brain.

I’m not sure which doctor he saw—because even “Doctor Google” isn’t that misinformed.

I told my mom that he probably doesn’t want to wear them either because of the cost or because of the stigma. For many people, hearing aids still carry the perception that they make you look old. I wear hearing aids myself. I’ve worn them for the past five years, ever since I lost my hearing overnight. I don’t think I’m old—but I guess that depends on who you ask.

When I lost my hearing, it took a few months for my insurance to approve the hearing aids. They’re expensive, and since I have severe hearing loss in one ear and moderate loss in the other, I needed high-quality aids—not the over-the-counter ones. The first pair I got cost nearly $6,000, but I was very lucky: insurance covered the full amount.

I completely understand people’s hesitation when it comes to the cost. Hearing aids are expensive, and the technology changes—and thankfully improves—each year. But for many adults, cost isn’t the only issue. There’s also a stigma. Some people see hearing aids as a sign of aging or weakness. And yes, it’s true that we lose some hearing as we get older. But that’s not the case for everyone.

In my case, my hearing loss was sudden. My ENT told me it was likely caused by a virus that attacked my system. One day, I could hear everything around me. The next day, my world went silent. My life changed forever.

Thankfully, hearing aid technology is incredible now. The devices are smaller, more advanced, and some even come in fun colors. I will never hear “normally” again, and I’ll always need hearing aids to stay productive and connected. But I wear them proudly.

If you’re struggling with hearing loss, don’t let fear, shame, or stigma stop you from getting the help you need. There’s nothing weak or “old” about using technology that helps you live your life fully.

#HearingLoss #SuddenHearingLoss #HardOfHearing #HearingAids #MyHearingJourney #HearingAidUser #BreakTheStigma #LifeWithHearingLoss #DisabilityAwareness

Why I Made Wednesdays My Self-Care Day

This year, as part of my annual resolutions, I designated Wednesdays as my self-care day. On Self-Care Wednesdays, I schedule doctor appointments, handle insurance issues, and manage my FSA and HSA tasks.

Why Wednesdays? Honestly, it was a practical (and slightly petty) choice—I don’t like the Wednesday Pilates instructor. Silly, but it worked. I needed a dedicated day for health-related matters, and Wednesdays stuck.

At the beginning of the year, I listed all the medical visits I knew I’d need—dermatologist, endocrinologist, dentist—and mapped them out month by month. Then I just started calling and scheduling . This way, I eliminated excuses and avoided procrastination.

As we get older, our calendars fill up with more medical appointments. But caring for ourselves—physically and mentally—is the best gift we can give ourselves and our loved ones.

For a long time, I avoided doctors. Like my dad used to say, “They just find things you didn’t know were wrong.” It took ten years and a lot of frustration before I was finally diagnosed with Celiac disease. Back then, doctors didn’t seem helpful—just another round of meds and foods to eliminate. So I stopped going.

But now I understand the value of routine care. I’ve made peace with it. And scheduling everything on a specific day ensures I actually follow through.

Wednesdays work for me. What day could work for you? Designate a self-care day for yourself—you deserve it.

#selfcare #wellness #health #lifehacks