Dear Diary,
Remember all that shortness of breath I was talking about?
Well, I went to the neurologist.
And apparently, before we could address my breathing, the universe needed to test my patience too.
My appointment was at 9:30 a.m.
I arrived at 8:52 a.m.
Yes.
Thirty-eight minutes early.
Want to guess what time I was actually seen?
10:02 a.m.
Needless to say, I was already annoyed.
😂😑
Nothing says “Thank you for being a responsible patient and arriving early” quite like sitting there long enough to reconsider every decision that led you to that waiting room.
But eventually, it was my turn.
And once I got into that room?
Apparently, I had some things to say.
🗣️ So Anyway, I Started Talking…
I went to see my neurologist, but I’m pretty sure I did most of the talking.
Actually…
I know I did.
The doctor sat there and let me ramble.
And ramble I did.
For probably close to 30 minutes.
I talked about the shortness of breath.
The humidity.
The asthma.
The MG.
The nebulizer helping one kind of breathing problem but not the shortness of breath when walking or doing simple activities.
And the biggest issue:
I still didn’t know exactly what was causing what.
Was asthma responsible?
Was MG responsible?
Was this some miserable collaboration between the two courtesy of Southern California humidity?
Because as I wrote in my last entry:
Relief is information. But so is what remains.
Something remained.
And I wanted to know why.
👀 Then Came the Questions
After patiently listening to my TED Talk titled:
“Kia Can’t Breathe and Nobody Knows Why,”
my neurologist started asking questions.
“Have you noticed any drooping of your eyelids?”
“How are your neck muscles?”
“Does anything in particular bother you?”
And here’s the problem:
I really only had a definitive answer for one of them.
The eyelid drooping.
I hadn’t noticed it before.
But really, why would I?
I’m not walking around staring at myself in a mirror all day.
Then I remembered something.
After getting my hair done, my hairstylist took a picture of me. When I looked at it later, I noticed something I hadn’t been paying attention to in real time.
My eyelid was drooping.
The picture had been taken toward the end of the day.
Well then.
Hello, little symptom I apparently didn’t know I had.
👀
💜 Then He Tested My Muscles
After listening and asking questions, my neurologist did several tests.
Most seemed okay.
Then he tested my neck.
That one?
Questionable.
My neck muscles were weak.
And suddenly, I had another piece of information to add to this increasingly complicated puzzle.
Eyelid drooping later in the day.
Neck weakness.
Shortness of breath with activity.
Asthma symptoms that improved with albuterol.
And still no neat little label telling me which condition was responsible for which symptom.
Apparently, my body’s refusal to wear name tags has continued into the sequel.
🫁 “I Can Hear You’re Struggling to Breathe.”
Then my neurologist said something that validated what I had been trying to explain.
He could hear that I was struggling to breathe.
On one hand:
THANK YOU.
Because when you’re living inside a body doing strange things, sometimes having someone else acknowledge what you’re experiencing matters.
On the other hand…
His recommendation was:
See your pulmonologist.
Sir.
😑
That was not what I wanted to hear.
Not because I don’t understand why pulmonology belongs in a conversation about breathing.
Obviously, I do.
It’s because my pulmonologist and I have a little…
history.
😒 It’s Not That I Expect Him to Know Everything
For anyone new to The Dual Diagnosis Diaries, let me explain.
My biggest issue with my pulmonologist isn’t that he didn’t immediately know what was causing my breathing problems.
Neither did I.
I don’t expect any doctor to take one look at me and magically know everything happening inside my body.
That’s not realistic.
My issue was that I didn’t feel like he was listening to what I was telling him.
I kept saying something wasn’t right.
I was struggling to breathe.
And it seemed like we worked our way through every respiratory disorder imaginable trying to explain why.
Meanwhile, I kept coming back to the same thing:
Something is wrong.
Eventually, he and I got into a pretty heated debate.
And somewhere in the middle of that disagreement, he suggested I see an ENT to help figure out what was going on.
Fine.
Off to ENT I went.
And wouldn’t you know it?
We found something.
The ENT evaluation identified left vocal cord paresis.
There was an actual problem affecting my vocal cord.
And subsequent testing revealed another significant finding:
My diaphragm was also paralyzed.
So when I say I have complicated feelings about returning to pulmonology, that’s where a lot of those feelings come from.
It isn’t about expecting every doctor to immediately know what’s wrong.
It’s about wanting the concerns I’m describing to be heard and investigated.
Especially when I know something happening inside my body isn’t normal.
⚖️ And Then There Was the Weight Conversation
Unfortunately, that wasn’t the only interaction that affected my trust.
At another point, my breathing problems were attributed to my weight, and I was referred to a bariatric doctor.
There was just one rather significant problem with that recommendation.
I have Crohn’s Disease.
But even beyond Crohn’s, there was something much bigger happening with my body at the time.
I was having difficulty swallowing.
I was choking when trying to eat.
I wasn’t eating.
And because I wasn’t eating, I lost damn near 100 pounds in approximately three months.
That wasn’t a weight-loss success story.
That wasn’t:
“Look at Kia getting healthy!”
That was:
“Kia cannot swallow food without choking.”
The swallowing problem was one of the complaints documented in my chart.
So imagine my reaction when, after I lost all that weight, my pulmonologist asked:
“How did you lose the weight?”
Sir.
😑
You read my chart.
The weight didn’t magically disappear because I discovered some fabulous diet.
I COULDN’T EAT.
Needless to say, I found the question rude.
But more than that, it reinforced the same feeling I’d had before:
Are you actually hearing what I’m telling you?
And that’s why hearing my neurologist say:
“Go back to pulmonology.”
wasn’t as simple for me as making another appointment.
My internal response?
Anybody but him.
😂😑
📅 Fine. I’ll Make the Appointment.
But here’s the thing.
I can be annoyed.
I can be frustrated.
I can have reservations about going back.
But none of those things make the shortness of breath disappear.
So I went onto MyChart and requested an appointment with pulmonology.
First available appointment?
December 2.
December.
DECEMBER.
Sir, I am having trouble breathing now.
At the rate we’re going, I could suffocate by December.
Okay, okay.
Dark humor. 😂
But seriously…
DECEMBER?!
When you’re requesting an appointment because you’re actively dealing with shortness of breath, seeing December 2 as the first available appointment feels ridiculous.
Still…
I scheduled it.
Because apparently chronic illness also means mastering the art of being completely frustrated with the healthcare system while still needing it to help you find answers.
Put that one on a T-shirt.
💜 And Then…That Was Pretty Much It
After everything I had explained…
After the questions…
After the testing…
After identifying the neck weakness…
After acknowledging that he could hear me struggling to breathe…
My neurologist completed my reasonable accommodation paperwork for work, renewed my Mestinon prescription, and told me to come back in three months.
And that was the appointment.
I walked in hoping we might figure out whether MG was responsible for the shortness of breath.
I walked out knowing:
My eyelid has been drooping.
My neck muscles are weak.
My neurologist can hear that I’m struggling to breathe.
Asthma responded to the nebulizer.
The exertional shortness of breath remains.
Pulmonology is apparently my next stop.
And my appointment is…
December 2.
Fantastic.
😂
🧩 Sometimes Answers Create More Questions
I think that’s one of the hardest things about navigating multiple chronic illnesses.
You go to appointments hoping for answers.
Sometimes you get them.
Sometimes you get another specialist.
Sometimes you get another test.
Sometimes you get:
“Come back in three months.”
And sometimes you get:
“See pulmonology.”
Followed by:
“Our first available appointment is December 2.”
🙄
But today’s appointment wasn’t pointless.
I learned something.
My neurologist identified weakness in my neck.
I recognized the eyelid drooping I’d previously overlooked.
And someone besides me could hear the breathing difficulty I’ve been trying to describe.
Those things matter.
Before the appointment, I knew something wasn’t right.
After the appointment, I knew a little more.
Not everything.
But more.
And maybe that’s how this works sometimes.
One symptom.
One appointment.
One piece of information.
One specialist at a time.
Even when the next specialist happens to be the exact person you did not want to see.
🎵 Music Playing…
“Breathe (2 AM)” — Anna Nalick
Because apparently breathing has become the main character in this week’s episodes of The Dual Diagnosis Diaries.
💭 Reflection Corner
One of the most frustrating parts of chronic illness is believing an appointment will finally connect all the dots—only to walk out holding a few more pieces of the puzzle.
But those pieces still matter.
The eyelid drooping matters.
The neck weakness matters.
The fact that the nebulizer helped part of the breathing problem matters.
The fact that the shortness of breath with activity remains matters.
And having a doctor acknowledge that he could hear me struggling to breathe?
That mattered too.
But this experience reminded me of something else:
Being referred back to a doctor you haven’t felt heard by before is complicated.
I can acknowledge the frustration from our previous interactions and still recognize that I need answers.
I can be reluctant to go back and still make the appointment.
I can advocate for myself without pretending that every interaction I’ve had with the healthcare system has made that advocacy easy.
And maybe that’s another side of self-advocacy we don’t talk about enough.
Sometimes advocacy is speaking up.
Sometimes it’s asking another question.
Sometimes it’s saying:
“No, that’s not what I’m experiencing. Let me explain it again.”
And sometimes?
It’s scheduling the December 2 appointment with the doctor you really didn’t want to see because finding out what’s happening with your body matters more than avoiding an uncomfortable conversation.
So yes.
I made the appointment.
December 2 and all.
The answer may not have come today.
But the conversation isn’t finished.
And neither am I.
💜 Have you ever been referred back to a provider who previously made you feel unheard? How did you balance needing answers with advocating for yourself differently the next time around?
Until next time, remember: advocating for yourself doesn’t always mean walking out of an appointment with an answer. Sometimes it means continuing to ask the question—even when the next available appointment is months away and the next doctor is the last person you wanted to see.
💜 The Dual Diagnosis Diaries
Where chronic illness gets honesty, advocacy, education—and occasionally another specialist.
Kia Lorice
Founder • Author • Advocate • Future Wellness Coach
The Dual Diagnosis Diaries
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