Big Girl Panties Diaries – Entry #66: We Might Have Had a Breakthrough
You get good at not getting your hopes up.
That’s what happens when you live in the in-between. When test after test comes back inconclusive, and symptom after symptom is “something we’ll monitor.” When you become the default project manager of your daughter’s pain—but no one can give you the project plan.
So you become fluent in medical shorthand. You prep for appointments like they’re depositions. You take notes like it’s your job (because it kind of is). You get used to managing what you can’t name.
And then… someone sees it differently.
Not someone new. Someone who’s been in it with us all along.
Hailey’s endocrinologist has walked this road with us for a while now—calling after hours to ask thoughtful questions, researching long COVID, writing a book, and genuinely trying to understand what so many others had missed. He didn’t just review labs. He stayed curious.
And this week, he may have cracked something wide open.
He reexamined the same nerve conduction test another doctor had dismissed as “probably carpal tunnel.” But instead of stopping there, he paid attention to which nerve wasn’t functioning properly. Then he layered in Hailey’s pain, her muscle weakness, her dizziness, and how it all intersected with her POTS diagnosis.
His conclusion? Functional Thoracic Outlet Syndrome.
Not a shrug. Not a guess. An actual explanation that fits her symptoms—and offers us a way forward.
Here’s what hit me the hardest: This moment didn’t come from some brand-new miracle appointment. It came from someone who had been listening all along. One who saw the pattern behind the pain. One who trusted the storyteller as much as the test results.
It reminded me of something I wrote back in Entry #1:
“She was dismissed by experts, misunderstood by educators, and visibly invisible to systems that didn’t yet recognize long COVID as a real, debilitating illness.”
That invisibility did damage. But I’ve been speaking up ever since—because I learned the hard way: if I didn’t use my voice, she wouldn’t be seen.
And this week, someone finally saw her.
Let me be clear: the arm pain is only one of Hailey’s long COVID symptoms. But right now, it’s the one I’ve been laser-focused on—because it’s the loudest. It’s been disrupting her sleep, compounding her chronic fatigue, and chipping away at her energy and spirit.
When your kid can’t sleep, she can’t recover. When she can’t rest, the fatigue deepens. And when that cycle keeps spinning—it breaks both of you.
So no, this isn’t a cure. But when you’ve lived in diagnostic limbo for this long, even a direction feels like daylight.
We’re still in it. But we’re no longer standing still.
What I’m Learning (Again):
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Sometimes it’s not about starting fresh—it’s about staying the course.
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The same data, in the right hands, tells a very different story.
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Validation heals more than any prescription.
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Moms aren’t hysterical—they’re historians. We remember every symptom, every red flag, every shrug that didn’t sit right.
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Just because someone didn’t see it before doesn’t mean it wasn’t there.
In Entry #60, I wrote about how stillness can be a win. But this week? We finally moved forward.
Not a leap. Not a cure. But motion. Purposeful, hopeful motion. And that counts, too.
Big Girl Panties Diaries Rule: When someone keeps showing up, they earn the right to finally see what others missed.