Tag: chronic illness

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?

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 vibrant purple flower burns and transforms into a dried, dead blossom, symbolizing how an endometrial ablation intended to treat adenomyosis caused further damage instead. — It was supposed to heal me. Instead, it burned everything down.

When Endometrial Ablation Makes Pain Worse

December 4, 2025 / Sandi

⭐PART 6 — The Procedure That Made Everything Worse

When you’ve lived with pain long enough, hope becomes something you don’t trust — but still cling to anyway.

So when the same doctor who inserted the IUD that perforated my uterus suggested an endometrial ablation, I listened. I didn’t trust her — I didn’t trust anyone at that point — but I was desperate. After decades of bleeding, pain, and dismissal, even a harmful doctor promising relief sounded like a lifeline.

It wasn’t a new beginning.

It was exhaustion disguised as hope.

This doctor had already caused me harm, but she talked about ablation like it was the solution she’d been holding back. The fix. The cure. The thing that would finally give me my life back.

I wanted to believe her more than I wanted to doubt her.

The Ablation That Betrayed Me

She performed the endometrial ablation and inserted Nexplanon during the same course of treatment. I remember lying there afterward, imagining a life where pain wasn’t my default state — where I could wake up and not brace myself for the day ahead.

But instead of relief, the pain escalated.Instead of healing, something inside me unraveled.

The ablation didn’t stop the bleeding.

Nexplanon didn’t stop the bleeding either.

It wasn’t until progesterone was added on top of Nexplanon that the bleeding finally stopped — not because the ablation worked, but because my body needed multiple hormonal barricades in place just to function.

The bleeding ended.

The damage did not.

My uterus was quieter, but it wasn’t healed.

I wasn’t living — I was enduring.

The Doctor Who Finally Saw the Damage… and Broke Me Anyway

After the ablation failed, I saw a different doctor — one with glowing reviews and a reputation for handling complex cases. I walked into that appointment scared but cautiously hopeful. Maybe, finally, someone would help.

During the physical exam, she stopped and stared.

She examined my uterus and said:

“It looks like that IUD was removed recently — maybe a month ago.”

But the IUD had been removed years earlier.

The scarring, the trauma, the damage — it was all still there.

She saw it.

She knew.

She finally validated that what I’d been experiencing wasn’t imaginary, hormonal, or exaggerated.

For one heartbreaking second, I thought this was the turning point.

And then she looked at my body — not my chart, not my medical history, not my pain — and fat-shamed me.

No plan.

No compassion.

No humanity.

Just blame.

I left that appointment sobbing. I cried the entire drive home. And somewhere on that drive, something inside me broke.

Not from adenomyosis.

From betrayal.

The Quiet Collapse

After that day, I stopped going to doctors.

I stopped advocating.

I stopped hoping.

I stopped believing anyone was coming to save me.

My uterus was a battlefield, but the war wasn’t what defeated me — the medical system did.

I wasn’t living anymore.

I was just managing symptoms like a hostage doing whatever it took to survive.

The bleeding had stopped, but the fear remained. If insurance ever refused a refill, if anything changed, if the fragile balance shifted — what then?

Stability didn’t feel safe.

It felt temporary.

The Year I Disappeared

From 2017 until the fall of 2018, I wasn’t a person with a future. I was a body in pain navigating days that felt pointless. I drifted through life without expectation, purpose, or belief that anything could be different.

I wasn’t waiting for help.

I didn’t think help existed. Other than family and my best friend, no one believed me. Or worse, they didn’t care.

But Endings Have a Way of Disguising Themselves

Because just when I had stopped believing anyone would ever take my pain seriously, I met someone who did — someone who listened without minimizing, questioned without doubting, and believed me before the medical system ever did.

I didn’t know it yet, but the person who would help change everything wasn’t a doctor.

She was the one who would become my safe place.

A sterile hospital hallway with closed doors, overlaid with a faint image of a person’s eye, suggesting fear, trauma, and medical experiences. — A clinical, empty hospital corridor overlaid with the faint image of a woman's eye, symbolizing the fear, dismissal, and emotional toll of seeking medical help while being ignored and gaslit.

The Doctor Who Looked Like Death

November 28, 2025 / Sandi

⭐Adenomyosis Series – Part 4.

The Doctor Who Looked Like Death and Treated Me Like I Didn’t Matter

By the time I met this next doctor, I was already worn down. Years of constant bleeding, chronic pain, and medical dismissal had left me exhausted — but still hopeful that maybe this doctor would finally listen.

Instead, I walked straight into one of the most dehumanizing appointments of my entire journey.

⚰️ The Doctor Who Looked Like Death — Literally

It sounds dramatic, but it’s the truth: this doctor looked eerily similar to Death from Supernatural — pale, expressionless, and cold. And unfortunately, his personality matched his appearance.

He didn’t greet me. He didn’t smile. He didn’t even make eye contact.

His body language said everything: I was an inconvenience.

♿ His Disgust Was Noticeable the Moment I Needed Help

Because of my disability, I needed assistance getting onto the exam table. Most providers are compassionate.

Not him.

He sighed loudly, placed his hand on my arm with visible reluctance, and hoisted me up like he couldn’t get the task over with fast enough. I felt less like a patient and more like a burden he was forced to tolerate.

It was clear that he found me disgusting. He barely wanted to touch me at all.

I remember thinking:

“If helping me onto the table bothers him this much, what happens next?”

“It didn’t matter that I was in pain. It didn’t matter that I didn’t want children. What mattered to him was a hypothetical man I hadn’t even met.”

The Comment That Still Haunts Me

As I described my symptoms — the constant bleeding, the pain, the failed treatments — he barely listened. When I told him I wanted a hysterectomy, he cut me off.

His response:

“I’d rather do a D&C on you every month than perform a hysterectomy. It doesn’t matter that you don’t want children. What about your future husband?”

I felt my hope collapse.

My pain didn’t matter. My autonomy didn’t matter.

My body belonged, apparently, to a man who didn’t even exist.

🧊 No Empathy. No Solutions. No Humanity.

He didn’t offer alternatives. He didn’t acknowledge my suffering. He didn’t ask a single question that indicated he cared.

He simply shut the door on my medical reality.

💔 The Damage That Words Can Do

I walked out of that office feeling:

humiliated

devalued

dismissed

and convinced that maybe my pain was invisible to everyone but me.

For the first time, I wondered if I was meant to live like this forever.

🔄 The Only Good Part of That Appointment? I Left Him Behind

I didn’t stay with him. I went back to a previous provider, because even imperfect care felt safer than the cold hostility in that room.

I didn’t know it then, but leaving that office was the first step toward eventually finding the doctor who would save my life.

In the moment, though, all I knew was this:

If this was what medical care looked like, I was on my own.

Woman sitting alone on the floor with her head buried in her arms, symbolizing hidden pain and isolation. — Hiding the pain no one could see — and carrying it alone.

The Pain I Carried Alone

November 20, 2025 / Sandi

⭐ PART 2 — The Years I Hid Everything

I look back now and realize just how young I was when everything started. Nine or ten years old — still a kid, still figuring out the world — when I passed a clot big enough to scare me, and then… nothing. No period again until I was about thirteen or fourteen.

And then it didn’t stop.

Most people get a week. I got years.

A day or two off, here and there, like the universe tossing me scraps just to keep me going — but mostly, it was constant. Heavy. Daily. Overwhelming.

And no one knew.

I wore dark clothes because I could bleed through them and no one would notice it. I learned to move carefully, sit carefully, stand carefully. I memorized where every bathroom was at school and timed my path between classes so no one would follow me in. I learned to fold towels in my laundry basket in a way that hid the fact they weren’t for drying off — they were for bleeding on.

I felt disgusting. I felt ashamed. And the hardest part? I didn’t even know why I felt ashamed.

It’s strange how kids can take on blame they were never meant to carry. Part of me thought something was wrong with me. Another part — the one wounded by being molested by my grandfather when I was seven — thought I somehow deserved it. Trauma makes you believe terrible things.

School didn’t help. The one time menstruation was mentioned, a teacher said, “If you lose more than a few tablespoons of blood, something is wrong.”

I sat there thinking, I lose that much just standing up.

But I didn’t say anything. Not because I liked the pain. Not because I wasn’t scared.

I didn’t speak up because silence was safer than shame.

And the pain — back then I thought that was “normal.” I’d pop pain meds like they were candy just to get through the day. It didn’t stop the pain, but it dulled it enough that I could pretend I was like everyone else.

I wasn’t in relationships. I wasn’t dating. I wasn’t doing any of the normal teenager things. I was too busy trying to survive my own body.

By the time I finally told a doctor anything — even the smallest sliver of truth — I was twenty-eight.

That’s almost two decades of bleeding daily. Two decades of hiding. Two decades of thinking no one wanted to know.

But the truth was simpler and sadder than that:

No one asked.

What’s sadder, I’m not sure if I would’ve told the truth if they did ask. In my eyes, being silent and acting like everything was normal, was better than facing the truth, that I was anything but normal.

So I kept surviving quietly, because that’s what I had taught myself to do.