Part 1: Ignoring the Signs
It’s easy to push through pain, exhaustion, and the nagging signs that something isn’t right. The to-do list never shrinks, and those random aches and pains? We brush them off, blaming stress or just being too busy. That’s exactly what I did. For years, I chalked up the fatigue, pain, and migraines to everything we’d been through—our battle with toxic mold, the hurricanes, the stress, the kids, and the never-ending chaos. But when I kept feeling worse instead of better, I started to wonder: Was something else going on?
Part 2: The Struggle to Be Heard
If you’ve ever faced a chronic illness, you know how difficult it is to walk into a new doctor’s office. For years, I was dismissed—told I “looked healthy” and that my pain couldn’t be real. From an “equivocal” Lyme disease diagnosis to lupus scares, celiac disease, chronic fatigue, and more, I was going in circles without real answers.
At 20, I had to take a medical leave of absence from college because I couldn’t walk up stairs. No diagnosis—just painkillers and antibiotics for suspected Lyme. The treatments only made me feel worse, so after six months, I threw the pills in the trash.
I pushed through the next few years, telling myself to “suck it up.” By 23, the pain returned—I couldn’t even pull in the brake on my motorcycle. A naturopath convinced me to try expensive supplements, but when they didn’t help, I quit. Again.
At 26, I moved to Florida, hoping sunshine would bring relief to my aching bones. Instead, I was hit with debilitating migraines. I blamed allergies and long hours at my desk, but as time went on, the fatigue and pain only got worse.
By late 2022, I was stuttering, forgetting things, severely depressed and feeling electric shocks throughout my body. Then we found toxic mold in our home. My focus shifted to remediation and detox, but even after rebuilding our home, my migraines became relentless—so bad that I could barely care for my kids.. So bad that I went to the ER several times.
In early 2024, I turned again to naturopaths promising “root cause medicine.” They listened, but urged me to see a local primary care doctor. That appointment went the same as all the others. The doctor suggested antidepressants, dismissing my exhaustion as “just being a mom.”
I still hoped for holistic solutions, but when the practice I was working with shut down, I was adrift once again—still searching for answers.
Part 3: The Partial Diagnosis – A New Step Forward
I kept pushing through, thinking I just needed to try harder. But spoiler alert: chronic pain isn’t something you can just power through.
Navigating the healthcare system when you don’t have one glaring issue but feel “off” in a hundred different ways is maddening. My migraines worsened—three a month, then five, then ten, fifteen—until I hit twenty four in one month. I knew I needed a different approach.
I went in prepared—lab work, a 25-year history, and a determination that wouldn’t be ignored. This time, I found a doctor who actually listened. A local internal medicine specialist—who didn’t dismiss me, didn’t rush me, and instead said, “Let’s figure this out.”
Over the next few months, my symptoms spiraled. My migraines became crippling, my arms and hands started going numb, and standing or even lying down made me dizzy. It felt like my body was wearing down, piece by piece.
A New MRI and the First Signs of a Diagnosis
On November 8th, 2024, my new doctor ordered an MRI of my spine. He wasn’t happy with my worsening nerve pain and numbness. If I had to describe it, it felt like deep, burning, radiating pain—down my spine, across my shoulders, into my arms. Electric shocks ran down my back. It was unlike anything I’d ever felt before.
Lying in the MRI machine, I prayed countless Hail Marys for answers. I wasn’t sure what the test would show, but I put my trust in God.
Then the call came.
“Heather, you’re not crazy. This is very real pathology. We have an answer.”
Relief and anger hit me at the same time. Anger for all the years I had been dismissed. For the doctors who told me it was stress. For the quick fixes that never fixed anything. For 25 years of pain with no answers. And now, suddenly, there was one.
The diagnosis: Syringomyelia—a rare and serious condition where fluid-filled cysts (syrinxes) form within the spinal cord, gradually damaging the nerves. My syrinx spans nearly 15 vertebrae, affecting my neck, shoulders, arms, my autonomic nervous system and migraines. It’s essentially a spinal cord injury from the inside out, silently disrupting the nerves that control my body.
The weight of it all hit me at once. How had I gone so long without knowing? I had complained of back pain, hip pain, tailbone pain, neck pain, and migraines for years—yet no one had ever ordered an MRI of my spine.
How had so many doctors ignored and brushed off my pain? Why did no one listen? Doctor after doctor—ER physicians, urgent care providers, specialists—how did they all miss this for so long?
It wasn’t just the mold. This was something much bigger. But at least now, I had a name for it.
Part 4: The Road Ahead & Moving Forward
Despite the chaos, confusion, and setbacks, I finally have an answer. There’s still a long road ahead—appointments with a neurosurgeon, neurologist, cardiologists and other specialists—but I’m grateful for the progress, even if the answers aren’t always what I hoped for. And yet, there are still more questions. My EEG came back abnormal, hinting at something more. My heart rate spikes when I stand, and I’m waiting on POTS testing to see if there’s another layer to all of this. Every new test feels like another piece of a puzzle I never wanted to solve, but here I am.
Adjusting to my new baseline has been tough. What my life looked like eight months ago feels like a distant memory. I can’t bounce on the trampoline with my kids or snowboard again. That reality is hard to process. Do I hold back and play it safe, or do I keep pushing forward? I don’t know yet—I’m still figuring it out. But I do know this: my body may have limits, but I don’t want to let fear decide what those limits should be.
Some days, I push forward. Today, I took a short walk. I danced in the driveway with Saylor. I got out of bed. I can feel my feet, move my hands, and hug my kids. That counts for something. Other days, I need to borrow someone else’s strength. Ben has been that steady voice, reminding me to stop fixating on worst-case scenarios and focus on what’s in front of me. His perspective has been a lifeline.
Still, I hesitate to share this. A part of me wonders why I should. What’s the point? I’ve rewritten these words over and over, questioning whether it’s worth putting out there. But I keep coming back to this: How many times was I dismissed? How many doctors brushed off my pain? How many times did I start to believe maybe it was all in my head? I wish I had spoken up louder, pushed harder, trusted myself more.
If there’s one thing I’ve learned, it’s that no one will advocate for you like you will. If something feels wrong, it probably is. Keep pushing. Keep asking questions. Keep fighting to be heard.
I don’t know what’s next for my health, but I’m done carrying the weight of guilt. My kids don’t need me to do it all—they just need me to love them. And I’m not doing this alone. Ben, my family, and a small handful of friends have been my safety net—filling in the gaps I can’t manage, whether it’s cleaning, helping me with homeschool, entertaining the kids, or simply being here.
There’s more ahead—more tests, more imaging, an EMG (I am so not looking forward to) more uncertainty. But I feel a strange sense of calm. An answer will lead to a solution. And as long as I trust God through it, I know He’ll guide me where I need to be.
If you’re navigating chronic pain, or a complicated medical diagnosis, just know—it’s okay to not be okay. I hope my writing helps you feel less alone. You’re always welcome to connect with me on Sunflower Isle—because we all deserve a safe place to share, vent, and support each other.
Through it all, I’m learning to embrace the uncertainty. To focus on the small moments—a quiet hug from my kids, hanging out with the chickens, fishing with my boys, sitting still for a bit. It’s easy to get lost in the worry of the bigger picture, but I’ve realized those small moments are what keep me grounded.
Thank you for being here with me. Every day, I’m learning to take things one step at a time, keep chasing sunshine, and trust that God has a plan.
Blue skies and endless adventures,
Heather
Disclaimer: I am not a medical professional. This post is based on my personal experiences and should not be taken as medical advice. If you are experiencing health issues, please consult a qualified healthcare provider for diagnosis and treatment.