The PA eventually came in and pulled up my neck X-rays.
There it was.
The straightening that always looks wrong to me even though I already know it exists.
Degenerative disc disease.
Yes.
I know.
What if the problem isn’t that I can’t explain my body—but that no one has been listening closely enough?
After months of trying to explain the same pain, I walked into another appointment expecting more of the same. Instead, someone finally examined the place I’d been pointing to—and suddenly, we were having a different conversation.
I woke up exhausted.
Not surprising anymore.
Oura said I had slept four hours and three minutes.
It also informed me that I had accumulated eleven hours and forty minutes of sleep debt, which felt less like useful health data and more like a formal complaint from my body.
Fair.
Rob’s snoring had made its contribution.
My pain was still a ten.
And we had another doctor to see.
Ortho.
Oh joy.
After the pain-management appointment two days earlier, my enthusiasm for another medical professional was approximately zero.
But my hair was washed.
Brushed.
Dried.
I took my morning medications.
Ate an Eggo waffle because apparently breakfast now exists primarily as a landing pad for pills.
And we went.
Again.
An X-ray tech came out and brought me back.
For X-rays of my neck.
Just my neck.
I asked her about it.
She said that was what she had been told to do.
Fine.
I went back out to Rob annoyed, because the pain I had been trying to get someone to pay attention to was not primarily in my neck.
But I also told him maybe they needed additional cervical views.
Maybe there was something they wanted to compare.
Maybe there was a reason.
I can be annoyed and still leave room for the possibility that I don’t know everything.
Both are allowed.
The PA eventually came in and pulled up my neck X-rays.
There it was.
The straightening that always looks wrong to me even though I already know it exists.
Degenerative disc disease.
Yes.
I know.
He specifically pointed out C5 and another level that has since been evicted from my memory.
He asked whether I was aware of it.
Yes.
Then he asked me to turn my head.
Left.
Right.
He watched me move.
“Oh.”
I laughed internally.
Yes, sir.
There is a lot of movement in there.
That part is also not news.
He asked whether it hurt.
Right side.
But then I clarified something.
That isn’t where this started.
The current problem started lower.
Mid-back.
Around my right scapula.
And then he did something incredibly complicated.
He listened.
We went through the history.
The original injury.
What happened afterward.
How things have progressed.
Myofascial pain syndrome.
hEDS.
Where the pain actually begins.
He did the same type of strength testing I had done at pain management.
I passed.
Again.
I told him other doctors have commented on my strength before because apparently one of the stranger features of my existence is being oddly strong while simultaneously feeling like my body is being held together by an understaffed maintenance department.
Then he moved to my shoulder.
My back.
My scapula.
He touched it.
And there it was.
The sounds.
The movement.
The exact area I had been trying to explain.
He could hear it.
He could feel it.
He pinpointed it.
And for a second, the most important thing happening in that room had absolutely nothing to do with what the eventual diagnosis might be.
Someone else could finally feel what I had been trying to describe.
I need to make that clear.
Because I had walked into that appointment with theories.
I always have theories.
I live in this body every day. I notice patterns. I know what makes something worse. I know what changes it. I know where something begins even when I don’t know why.
Then I think.
And usually I research.
That still does not make me a doctor.
Nor do I want to be one.
If I’m wrong, correct me.
Actually, please correct me.
At one point the PA corrected how I pronounced a medical term.
I thanked him.
That’s useful information.
I don’t need to protect my ego from being wrong.
I need the person with the medical expertise to bring that expertise into a conversation with me, the person who has the lived information.
Those are different kinds of knowledge.
They should probably meet occasionally.
So when his working assessment started overlapping with things I had suspected, my reaction wasn’t:
I told you so.
It was something much quieter.
Oh.
I’m not insane.
In the room, he told me he did not think a pinched nerve was the most likely primary explanation. The written note I would later read still listed cervical radiculopathy as the primary diagnosis.
Could nerves still be involved in some of what I feel?
Maybe.
We don’t know yet.
The MRIs are still coming.
But his working assessment was more centered around the scapular region.
The levator scapulae.
Scapular dyskinesis.
Scapulothoracic bursitis — which the written record would document as a diagnosis.
Muscular tightening.
And yes, I knew my levator scapulae had been angry for a long time.
I have spent enough time living inside this body to know where that particular asshole lives.
What had changed lately was everything around the rest of the scapula joining the uprising.
I had also wondered for some time whether my scapula was moving incorrectly.
I usually called it a winged scapula because that was the closest non-medical description I had.
That was my observation.
Not a diagnosis.
Now I had a clinician identifying scapular dyskinesis during the examination, while the written record documented scapulothoracic bursitis of the right shoulder.
That distinction matters.
I also explained my working theory.
Not as:
Here is what is medically wrong with me.
More like:
Here is what I think might be happening. Tell me where this falls apart.
My thought has been that the instability and myofascial issues may be creating a situation where muscles are constantly trying to stabilize things, tightening and locking down, and potentially contributing to some of the other symptoms downstream.
He didn't roll his eyes.
He didn't interrupt me.
He didn't remind me that I wasn't a doctor.
He listened.
Considered it.
Then gave me his opinion.
That is literally all I have been asking for.
He left to consult with the doctor.
Then came back.
No major change in the working assessment.
We need the MRIs.
Then we talk again.
Perfect.
That is how a working diagnosis is supposed to work.
Working.
Not final.
Not carved into stone.
Here is what we think based on what we know today.
Now let’s collect more information.
This part deserves its own section because I had just gone to pain management asking essentially the same question:
What do I do while we figure this out?
Because I understand that sustainable treatment takes time.
I understand imaging takes time.
Physical therapy takes time.
Strengthening takes time.
Figuring out a complicated body takes time.
Unfortunately, I still have to occupy this body during all of this.
The PA prescribed Journavx for pain.
He sent a referral for physical therapy.
And then he gave me an injection behind my scapula aimed at the area of suspected inflammation.
Right in that sucker.
Or technically behind that sucker.
Whatever.
For once there was both:
Here is what we are investigating.
And:
Here is something we can try now.
Thank you.
That is all I wanted.
We got out to the truck.
My scapular area had been injected.
Rob looked at this situation and apparently saw opportunity.
Now I could sit at my computer and work while it was numb.
Sir.
I love this man.
But my body had another memo.
I was exhausted.
Not regular tired.
The kind of tired where you know sleep exists conceptually but your brain is no longer qualified to participate in higher-level operations.
I needed a nap.
Desperately.
I did not get one.
Because despite owing myself nearly twelve hours of sleep, my pain would not let my brain shut down.
Which feels like a particularly cruel system failure.
Body: We require sleep.
Pain: Request denied.
The injection did help the scapular area somewhat.
Not dramatically.
My overall pain was still a ten.
The scapular area dropped to around a nine.
And apparently that one-point reduction was enough for my brain to begin noticing every other member of the right-side pain department.
My forearm.
My tricep.
My armpit.
The bottom of my scapula.
Sciatica.
My calf.
Even the top of my right foot.
None of those were necessarily new.
They just became louder once the scapula stopped screaming over everyone else.
The best description I could come up with was a ping-pong ball.
My entire right side seemed to stay around an eight-and-a-half or nine while some imaginary pain ball bounced from location to location deciding which one would register as MAX for a while.
Forearm.
Calf.
Foot.
Scapula.
Sciatica.
Sometimes for minutes.
Sometimes longer.
Then somewhere else would take over.
At one point I actually wanted the scapular solo back.
At least I knew that song.
Meanwhile I was freezing.
And sweating.
At the same time.
Then briefly just freezing.
Then hot.
Then both again.
My completely non-medical working theory was that dysautonomia and the steroid were having conflicting opinions about who controlled my internal thermostat.
Research department may investigate.
Pain Fish is merely reporting from the scene.
I ate some of a chicken club sandwich.
Some potato salad.
And somehow managed 29.4 ounces of water, which compared with the previous day's 8.5 ounces felt like my Hidrate bottle deserved an employee-of-the-month plaque.
Eventually Kaylee made it home.
Attitude intact.
Rob served as chauffeur.
Poor Rob.
And eventually—
despite the pain,
despite not getting the nap,
despite my brain feeling like mush—
I made it to my office.
That's important.
I did not leave orthopedics cured.
My pain did not disappear.
The injection did not suddenly return my life.
I still don't know exactly what is happening.
The picture could still change with additional evaluation.
At that point, the MRIs were still expected to add more information.
Physical therapy hasn't even started.
There are still questions everywhere.
But yesterday gave me something I had been missing.
Not an answer.
A direction.
And maybe even more importantly:
Someone listened long enough to understand my question.
There is an enormous difference between those two things.
For months, maybe years in some ways, I have tried to explain sensations that are difficult to put into words.
Tightness.
Pulling.
Movement.
Grinding.
The feeling that my scapula is trying to escape the confines of my body.
The sense that muscles are locking down around something that doesn't feel stable.
Sometimes the language sounds ridiculous because bodies do not come with diagnostic subtitles.
You just feel something.
Then you try to translate it.
And when enough people don't understand the translation, eventually you start questioning the source material.
Maybe I'm describing it wrong.
Maybe I'm focusing on the wrong thing.
Maybe what I feel isn't actually significant.
Maybe I'm crazy.
Yesterday somebody put his hands on the place I had been pointing to.
He heard it.
He felt it.
And he said, essentially:
There is something here worth investigating.
That didn't lower my pain from ten to zero.
It didn't restore my sleep.
It didn't finish the website.
It didn't give me my old life back.
But after everything lately, it mattered.
Because sometimes being heard doesn't fix anything.
Sometimes it just means you don't have to spend whatever energy you have left proving that the thing you're experiencing exists.
And yesterday, for once—
I didn't have to prove it.
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