Author: Sandi (Page 2 of 4)

Warm, lived-in living room with soft light and a cozy, slightly messy space, reflecting a quiet, personal moment

⭐ When It Didn’t Come Out Clean: A Disability Assessment and Letting Myself Be Seen

March 23, 2026 / Sandi / 0 Comments

I went into the assessment thinking I needed to hold it together.

Answer clearly. Stay composed. Explain things in a way that made sense.

Not too much. Not too emotional. Just enough.

I’ve gotten pretty good at that over the years — finding a way to explain my life so it sounds manageable. Something people can understand without sitting in it too long.

But this time… it didn’t really work like that.

She started asking questions about my day-to-day. About what I can do. What I can’t. What things actually look like at home.

And I tried to answer the way I usually do. Clean. Simple. Contained.

But somewhere in the middle of it, my body had other plans.

The words didn’t come out the way I expected them to. My chest tightened, my throat closed up, and before I could stop it, I was crying.

Not dramatically. Not uncontrollably.

Just… enough that I couldn’t pretend everything was fine.

I remember thinking, this is not how this is supposed to go.

I was supposed to explain things. Not… show them.

There were moments where I couldn’t find the words I wanted. Where my brain just stalled out. And my wife stepped in — filling in the gaps, explaining things I couldn’t quite get out.

Not over me. Just… alongside me.

And honestly, I think that mattered more than anything I could have said perfectly.

At some point, I realized I wasn’t going to be able to present my life in a neat, understandable way.

There wasn’t going to be a version of this that sounded “okay.”

And maybe that was the point.

Because when it was over, she said she was going to recommend PCA services.

Which means help.

Actual, tangible help.

Not because I explained things well.

But because, for once, I didn’t.

I didn’t hold it together.

I didn’t translate everything into something easier to hear.

I just… showed what it looks like.

And somehow, that was enough.

And I think I’m starting to understand that maybe it doesn’t have to come out clean to be real.

Maybe it just… has to be honest.

Have you ever had a moment where you couldn’t hold it together the way you thought you should?

Craft supplies, beads, and jewelry-making tools spread across a wooden table with the title “Christmas… Eventually,” representing handmade gifts that take longer than expected.

🎁 Field Notes: Christmas… Eventually

March 16, 2026 / Sandi / 0 Comments

The other day I had a realization.

A deeply humbling realization.

I still have Christmas presents I started making two years ago.

And not only that…I also have presents from last Christmas that still need to be finished.

Which means, technically speaking, my holiday production schedule is running somewhere between “fashionably late” and “archaeological discovery.”

But in my defense…Handmade gifts take time.

Sometimes that time is measured in weeks.

Sometimes months.

And sometimes… apparently…multiple Christmases.

🎄 The Handmade Gift Timeline

When you decide to make gifts instead of buying them, there’s always this hopeful moment where you think:

“I’ll start early this year.”

And you mean it.

You really do.

But then life happens.

Chronic illness happens.

Caregiving happens.

Executive function goes on vacation.

And suddenly the calendar flips forward like a scene from a time-lapse nature documentary.

🧠 ADHD Holiday Math

Normal holiday math says:

Start gift → finish gift → wrap gift → Christmas morning.

My brain’s version looks more like this:

Start gift → set aside temporarily → forget about it → rediscover it six months later → feel hopeful again → repeat.

At this point my handmade gifts are less “Christmas presents” and more long-term creative investments.

🌿 Why I’m Not Beating Myself Up About It

There was a time when realizing this would have made me feel like I’d failed.

Like I should have been more organized.

More disciplined.More on top of things.

But life has taught me something important:

The timeline of a handmade gift doesn’t actually determine its value.

Care does.

Intention does.

Love does.

Even if that love takes a slightly… scenic route.

🎁 The Honest Truth

The truth is, when you live with chronic pain, ADHD, caregiving responsibilities, and the general chaos of being human…

Some things just move slower.

And that’s okay.

The people I love don’t care whether a gift shows up in December…or February…or occasionally two Christmases later.

What they care about is the thought behind it.

🌲 Field Notes From a Slightly Chaotic Holiday Schedule

Good things take time.

Sometimes that time is measured in days.

Sometimes in months.

And sometimes…apparently…in multiple holiday seasons.

Which is fine.

Because Christmas happens every year.

No rush.

Narrow gravel path between two concrete walls symbolizing barriers in accessible housing design.

🌿 Field Note: The House I Live In Was Never Built for Me

March 9, 2026 / Sandi / 0 Comments

Lately I’ve been thinking a lot about accessible housing — and how rare it really is.

There’s a quiet assumption built into most homes that everyone living there can walk, climb stairs, step over thresholds, and navigate narrow spaces without thinking about it. If you can’t, suddenly the most basic parts of daily life become complicated.

Take my own house, for example.

The only shower in the house is in the basement. I can’t safely get down there. The doorways are narrow enough that a wheelchair would struggle to fit through them. Even moving through the house with crutches takes planning.

And this wasn’t an oversight.

My mom had mobility issues long before I became disabled. But no modifications were ever made. No ramps. No accessible bathroom. Nothing that would make daily life easier.

The house worked for the person who built the rules of the house — and that was considered good enough.

If he could access everything, then the house was “fine.”

Everyone else was expected to figure it out.

I’ve been thinking about that a lot lately because accessible housing isn’t just a personal issue — it’s a systemic one.

New housing developments are still being built with multiple floors and stair-heavy designs as the default. Apartment buildings might include one or two accessible units in a building of a hundred. And the few homes that are intentionally designed with accessibility in mind are often marketed as “specialty” or “retirement” housing instead of simply being part of normal community planning.

The result is that disabled people are often forced to adapt themselves to spaces that were never designed with them in mind.

But here’s the quiet truth that doesn’t get talked about enough:

Mobility is not a permanent guarantee.

Most people will experience disability in some form during their lifetime — through injury, illness, or aging. Yet we continue building homes as if accessibility is a rare edge case instead of something that benefits everyone.

Wider doorways. Step-free entrances. Bathrooms that can actually accommodate mobility aids. These things don’t make a house “special.” They make a house usable.

And usable spaces benefit far more people than we tend to realize.

Right now, I live in a home that requires constant workarounds.

But it’s also made me see the bigger picture more clearly.

Accessible housing isn’t just about disability.

It’s about building spaces where people can continue living their lives safely — even when life doesn’t go according to plan.

Accessible housing is something most people don’t think about until they need it.

But once you start noticing it, you see it everywhere — the stairs, the narrow doors, the spaces that assume everyone moves the same way.

If you’ve experienced this too, or if you’ve seen homes designed differently, I’d love to hear your perspective.

Snow-covered rural driveway curving through quiet winter trees

🌿 Field Note: When I Stopped Explaining

March 2, 2026 / Sandi / 0 Comments

We were about three miles from home when the tire went flat.

I had just picked my wife up from work, and we were heading back after what was supposed to be a mild snowstorm. The forecast said two to four inches. Minnesota, apparently, had other plans. By the time we were driving home, we were sitting closer to eight or ten.

I pulled over on the side of a country road while my wife hopped out to check the damage. Two puncture holes. Not exactly something you can wish away.

First call was to our neighbor. He wasn’t home — out plowing snow and booked solid for a couple more hours. Fair enough. My wife checked for the spare but looked in the wrong spot, so at that point we thought we didn’t have one. AAA said a tow truck could get to us in about two hours. They were busy pulling people out of ditches.

And that’s when the practical reality hit me.

If the car got towed… I was going to have to climb up into the truck cab.

And I couldn’t.

So I called my neighbor back and explained the situation. Told him it might be a few hours. And then — the part that stuck in my throat for a second — I said plainly that I wouldn’t be able to get into the tow truck because I’m disabled.

He paused.

Then said quietly “oh.”

And honestly? That made sense. This is someone I grew up with. Someone who has seen me in my pajamas more times than I can count on my fingers. 😂 For nearly twenty years, I’ve always had some kind of explanation ready when my crutches came up — something temporary-sounding, something easier than the full truth.

Old habits run deep.

He offered to have his son come get us. I told him I wanted to check what AAA could do first and that I’d keep him posted.

After that, there wasn’t much to do but wait.

So we did what you do when you’re stranded on a snowy roadside in Minnesota — we settled in and started working through the leftover Valentine’s chocolate like it was part of the emergency plan.

A woman pulled over and asked if we needed help. We thanked her and told her we were okay. Not long after, another man stopped and offered us a ride somewhere warm. We declined again, grateful but managing.

Then about fifteen minutes later, another SUV pulled up.

Turns out his wife was the one who had offered us snacks — and she had apparently sent him back on a mission. 😂

He found the spare tire (in the correct spot, bless him) and had it swapped out in no time. I offered to pay him. He refused. My wife handed him some car wash books we had in the car, and after a polite back-and-forth, he finally accepted.

He even followed us for a couple of miles just to make sure we made it safely down the road.

By the time we got home — truly home — something in my chest had shifted.

Not because the moment itself was easy. It wasn’t. Old voices were loud for a minute there — the ones that say don’t look weak, don’t show it, don’t let people see where it hurts.

But sitting there in the quiet afterward, I realized something I hadn’t expected.

For the first time in almost twenty years…I wasn’t trying to keep track of the story anymore.

And it turns out, that weighs a lot less.

A wide-eyed excited dog with mouth open in a playful, chaotic expression. Text reads “The Math Ain’t Mathing,” representing the unpredictability of chronic illness.

Field Notes: The Math Ain’t Mathing

February 23, 2026 / Sandi / 0 Comments

Why the numbers never add up — and honestly, I’d like to speak to management.

There is regular math……and then there is chronic illness math.

They are not the same.

Not even a little bit.

Because according to normal human math:

Eight hours of sleep should equal feeling rested.

One small errand should equal a normal functioning day.

A quiet weekend should equal restored energy.

And yet.

My body routinely looks at these perfectly reasonable equations and says:

“Absolutely not.”

➕ The Math That Never Maths

Chronic illness math looks more like this:

8 hours of sleep = still tired

One appointment = full system reboot required

“I feel pretty good today” = mysterious consequences tomorrow

Cold weather = muscles immediately filing formal complaints

It’s less of a calculator situation…

…and more of a weather prediction crossed with interpretive dance.

Because as Annie Elise so perfectly puts it —the math ain’t mathing. 🤣

At this point I would just like someone — anyone — to explain it to me like I’m five.

🐶 Bingo Energy, Muffin Spirit (Revisited)

Spiritually, I am still very much:

✨ Bingo energy

🔥 Muffin spirit

Which means on the outside I am trying to be gentle and reasonable……but internally, when my body does something chaotic, there is a small Muffin voice going:

“EXCUSE ME???”

Especially when I’m tired.

Or cold.

Or — and this is very important —hungry.

🥄 Learning the New Math

The longer I live in this body, the more I’m learning:

This isn’t broken math.

It’s just… different math.

It’s a system where:

rest counts more than pushing

small wins count more than big plans

and listening to my body is more accurate than any calendar I’ve ever owned

Some days I still get frustrated.

Okay — many days.

But I’m slowly learning that working with my body instead of arguing with it tends to go… significantly better.

(Results may vary. Muffin still makes occasional appearances. Especially if I’m hangry)

🌱 Gentle Reminder

If your body’s math doesn’t make sense either…You are not doing it wrong.

You are not lazy.

You are not imagining things.

You are just living in a body that plays by different rules.

And honestly?

We’re doing pretty amazing considering the circumstances.

💛 Softly chaotic. Medically complicated. Still standing.

Phrase “the math ain’t mathing” lovingly borrowed from Annie Elise because… honestly… accurate.

A small brown dog mid-bark with an open mouth, looking excited and slightly chaotic. Overlaid text reads “Bingo energy, Muffin spirit,” conveying playful humor.

Field Notes: Bingo Energy, Muffin Spirit

February 16, 2026 / Sandi / 0 Comments

My spouse and I recently watched all of Bluey.

(All of it. No regrets.)

Somewhere around season three, we reached a consensus:

I have the personality of Bingo…but the spirit of Muffin.

Which, honestly, explains a lot.

On the outside, I am gentle. Thoughtful. Observant. I notice feelings. I want everyone to be okay. I try to be kind. I apologize when I bump into furniture.

Internally?

Pure Muffin.

Somewhere deep inside me lives Muffin in her grumpy grandma era: wildly confident, slightly feral, and absolutely prepared to argue over a scooter if necessary.

Especially if I’m hungry.

Winter has really brought this duality into focus.

My body wants softness. Blankets. Heating pads. Quiet. Rest.

My nervous system, meanwhile, is standing on the couch yelling, “THIS IS UNACCEPTABLE,” because it’s cold, the schedule changed, and someone suggested doing a thing.

I will be calm and reasonable for hours — and then completely unravel because my shirt sleeves are bothering me.

Classic Muffin.

I’m learning that listening to my body doesn’t always look serene and enlightened. Sometimes it looks like negotiating with a tiny, loud inner creature who is technically correct but extremely dramatic.

So we compromise.

Bingo gets:

gentleness

rest

warmth

compassion

Muffin gets:

snacks

very firm boundaries

a heating pad

and permission to stomp around a little (metaphorically….but sometimes literally)

And honestly?

It’s working.

Some days, healing looks like deep breathing and reflection.

Some days, it looks like laughter.

And some days, it looks like saying, “Okay, okay — I hear you,” and making another cup of coffee.

Field notes from winter:

I contain multitudes.

Some of them are cartoon dogs.

All of them deserve care.

A warm mug of hot cocoa with marshmallows sits near soft twinkle lights, with a snowy winter view outside the window. Text reads “When My Body Got Quiet,” conveying comfort and calm after a long season of pain.

When My Body Got Quiet

January 26, 2026 / Sandi

But my brain didn’t trust the silence yet

Content note: mention of blood as a trauma trigger (non-graphic)

Part 12 — When My Body Got Quiet, My Brain Didn’t

I thought that once surgery was over, everything would be better.

I thought relief would feel like freedom.

I thought I’d wake up one morning and my body would finally be… normal.

But that isn’t what happened.

Not exactly.

Because my body got quieter.

But my brain didn’t.

✨The Weird Thing About Feeling Better

After the hysterectomy, I realized something almost immediately:

The pain I had been living with for years was gone — or at least, dramatically reduced.

And instead of feeling instantly joyful, I felt…confused.

Like my body had been screaming for so long that when it finally stopped, the silence didn’t feel peaceful at first.

It felt unfamiliar.

It felt like standing in a room after a fire alarm shuts off — ears ringing, heart racing, waiting for the next blast of noise.

My body was calmer.

But my nervous system was still bracing.

🧠 I Kept Flinching Anyway

I kept expecting pain to catch me off guard.

I’d shift my weight… and wait.

I’d stand up… and wait.

I’d laugh too hard… and wait.

I’d wake up in the morning… and wait.

I kept doing the math I’d done for years:

How long can I sit before it hurts?

How far can I walk before I pay for it?

How much energy do I have before my body turns against me?

How many hours until I’m curled up again?

Even when the pain wasn’t there like it used to be…the fear of it still was.

My brain didn’t trust relief.

Not yet.

And I didn’t have a name for it at first, but I do now: C-PTSD or Chronic Post Traumatic Stress Disorder

Even after surgery helped my body, my nervous system stayed on alert. I braced. I flinched. And sometimes I fell apart emotionally at the sight or smell of blood — like my body couldn’t tell the difference between “now” and all the years I spent bleeding and being told it was normal.

It wasn’t weakness.

It was my body remembering.

🖤 The Truth: I Was Still In Survival Mode

I didn’t realize how much trauma my body had stored until the pain stopped being the main emergency.

Because once the constant bleeding and pelvic pain calmed down, a new reality bubbled up underneath it:

I had been surviving.

For years.

I had been dismissed, gaslit, minimized, and made to feel like I was exaggerating my own suffering.

I had learned to speak carefully.

To downplay.

To brace for disappointment.

To expect rejection.

I didn’t just lose trust in doctors.

I lost trust in my own body.

So even when my uterus was finally gone…the survival programming didn’t just disappear with it.

It clung.

🌊 The Aftershocks

Healing is supposed to feel like a straight line in the right direction.

But for me, it didn’t.

It felt more like waves.

Some days I felt lighter.

Some days I felt angry.

Some days I felt grief I couldn’t name.

Some days my body felt calm, but my muscles stayed clenched anyway.

Because pain had been my normal for so long that my body had built a whole personality around it:

shoulders always tight

jaw clenched

pelvic floor guarded

breath shallow

nervous system stuck on high alert

It wasn’t just pain.

It was conditioning.

🌱 Learning a New Kind of Healing

Eventually, I started to understand something important:

Relief isn’t always the finish line.

Sometimes relief is just the moment you finally have space to start healing in other ways.

My surgery removed a massive source of physical suffering.

But it didn’t erase the years of damage caused by being ignored.

It didn’t erase the fear.

It didn’t erase the grief.

It didn’t erase the way my body learned to tense first and ask questions later.

So I started trying to heal differently.

Not by pushing.

Not by proving.

Not by pretending I was magically fixed.

But by listening.

By learning what safety felt like again.

By letting my body be cautious… and gently showing it that it didn’t have to fight so hard anymore.

When the Shoe Never Dropped

January 19, 2026 / Sandi

Part 11 — Learning to live without bracing for pain

Content note: post-surgical recovery, chronic pain history, grief, anger, medical trauma(non-graphic)

There’s a strange thing nobody tells you about finally getting help.

Sometimes the hardest part isn’t the pain.

It’s the silence after.

✨Waiting for the Other Shoe to Drop

The first couple days after surgery, I kept waiting for the moment where the real pain would show up.

Because it had to, right?

A major operation doesn’t just feel like a mild inconvenience. There was no way this was going to be easier than the pain I lived with before. No way.

So I waited for the “shoe to drop.”I waited for the moment where my body would remind me that healing still hurts. That I didn’t get to escape pain that easily.

But that moment never came.

Never.

🔥 The Weirdest Part? The Shots Were Worse

There was soreness, sure. Tenderness. A body trying to recover.

But the thing that irritated me the most during recovery wasn’t the surgery at all.

It was the daily blood thinning shot I had to give myself.

Those little injections annoyed me far more than anything happening at my surgical site. And that realization stopped me in my tracks.

If that was the thing pushing me toward grumpiness, then it meant something profound: my baseline for pain had been so high for so long that even post-surgical healing felt gentler than the life I’d been living before.

The closest I came to an “oh fuck this hurts” moment was… honestly kind of ridiculous.

I sneezed.

While sitting on the toilet.

With absolutely no way to brace my abdomen.

That one was HORRIBLE.

For a split second, I was convinced I’d popped a stitch. I yelled for my wife (then girlfriend), panicking, and had her check to make sure I wasn’t bleeding.

Everything was fine — but the fact that that was the worst moment?

That’s when a quiet realization began to settle in:

If this was the worst of it…then what I had been living with before was truly unimaginable.

🌊 The Shock of “Better”

I kept getting reminded to take my pain meds.

Not because I was being brave.

But because I just… didn’t feel desperate for them.

My wife looked at me at one point and said something I’ll never forget:

“You just had major surgery. You should be feeling worse than this.”

And she wasn’t wrong.

She was shocked.

But I wasn’t.

Because the truth was… post-surgery pain wasn’t even half of what I’d been living with.

And that thought didn’t just bring relief.

It cracked open something deeper.

🖤 Grief Isn’t Always Sad

The grief didn’t come all at once.

It didn’t show up as a dramatic breakdown or a movie moment.

It showed up as anger.

Lots of anger.

I was angry because I was right.

I was angry because the hysterectomy did give me my life back.

I was angry at all the doctors who dismissed me, minimized me, and made me feel like I was just weak or dramatic or “too sensitive.”

I was angry at the procedures I was pushed into — the ones that were supposed to help, but only made my case more complex.

And I was angry at my body.

Angry that I didn’t have a “normal” body.

Even after surgery, my body is still complicated. I still have fibromyalgia. I still have arthritis. I still have pain.

But I was angry that my body turned against me for so long in a way that stole entire years of my life.

And then there was the grief that surprised me most.

I never really wanted children.

But I still grieved that the choice was taken away — not by preference, not by timing… but by survival.

By necessity.

It was the option being gone that hurt, even more than the option itself.

🌱 Learning to Live Without Bracing

The truth is… I didn’t know how to exist without pain being the loudest voice in the room.

For so long, my entire life was built around survival:

managing symptoms

preparing for the next flare

fighting to be believed

holding myself together in public

collapsing in private

Pain wasn’t just something I experienced.

It became part of my personality.

My schedule.

My nervous system.

My identity.

So when it finally got quieter, it wasn’t instantly peaceful.

It was unfamiliar.

It was disorienting.

It was like my body didn’t know what to do with a life that didn’t revolve around suffering.

I kept waiting for punishment.

I kept waiting for the other shoe.

But it never dropped.

And slowly, the quiet started to feel like something else:

A beginning.

Adenomyosis: The Pain I Carried for 24 Years

A cozy winter living room with a lit fireplace, soft blankets and pillows on a couch, and candles glowing on a table. Snow falls outside the window. Overlaid text reads “Listening to My Body in Winter,” conveying warmth, rest, and attentiveness.

Field Notes: Listening to My Body in Winter

January 12, 2026 / Sandi

❄️ Winter has a way of making things honest.

The cold settles into my joints faster. Muscles tighten more easily. My body speaks up sooner — not dramatically, just clearly. I’ve learned that if I don’t listen early, it will insist later.

For a long time, I treated winter like something to push through. I kept the same pace, the same expectations, the same internal pressure — and paid for it with flares, exhaustion, and a body that felt constantly on edge.

This season, I’m trying something different.

I’m paying attention to the small signals: when my shoulders creep up toward my ears, when my pelvic floor clenches, when rest feels necessary instead of optional. I’m noticing how much warmth helps, how slowing down changes the volume of pain, how choosing gentler movement can be enough.

Listening doesn’t mean giving up.

It means responding sooner.

Some days that looks like doing less.

Some days it looks like doing things differently.

Most days, it looks like letting winter be winter — quieter, slower, and more contained.

I’m learning that my body isn’t asking for perfection or productivity. It’s asking for care, consistency, and permission to move at a pace that doesn’t hurt.

This season, I’m listening — and letting that be enough. ❄️

A soft winter watercolor scene with snow falling around evergreen trees and a small cabin. A deer stands near the trees. Overlaid text reads: “Coming Back Gently,” conveying a calm, quiet return.

Coming Back Gently

January 5, 2026 / Sandi

I’m back — quietly, without fanfare.

The holidays asked for more rest than words, and I listened. Some seasons are for making, and some are for holding things together softly. This one was the latter.

Lately, I’ve been noticing the small things again: winter light through bare trees, the comfort of warmth after the cold, the way stillness can feel less like emptiness and more like space. Nothing profound. Just real.

This space was never meant to move quickly. It was meant to grow slowly, honestly, and with room for pauses — especially the necessary ones.

So this is me reopening the door, gently.

More words will come. For now, I’m here.

Thank you for being here too. 💜