The Life I Knew — Until Everything Changed

"In late 2019, I was on top of the world—living out my dream job as an emergency room nurse at a Level One Trauma Center. I thrived in the chaos, led codes, and stabilized patients clinging to life. I was saving lives, making split-second decisions, and doing the work I was born to do. At the same time, I had just moved into a new apartment, excited for a fresh start. Little did I know, this move would be the tip of the iceberg for what was to come next.

Because in what felt like the blink of an eye, everything changed. Strange symptoms began creeping in. Fatigue, burning pain, confusion. Subtle at first, but persistent. I thought I was just burnt out, that maybe I needed a break. But the whispers my body was sending quickly became screams.

My brain was on fire.

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The Struggle for Answers

I saw 36+ western medicine providers—specialists, surgeons, cardiologists, neurologists, rheumatologists, and geneticists. I underwent four back-to-back surgeries. I had biopsies, scans, and tests for conditions like ALS and MS. My labs kept coming back “normal,” and yet I couldn’t stand, couldn’t walk without assistance, and couldn’t follow conversations. I went from working 12+ hour shifts to needing to be carried to the bathroom.

I was dying, and no one could tell me why.

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Betrayed by the System

Doctors began questioning the validity of what I was feeling. When I tore both of my shoulders atraumatically, I was told it “didn’t make sense” and that it was unlikely—until MRIs confirmed severe tears. My PCP once reviewed a Lyme test showing one positive band and told me, “It’s okay, it just means you have bacteria in your blood,” with no follow-up or concern. Other providers wanted to operate on my feet without imaging, saying they were confident in the diagnosis and didn’t need further proof.
 

I went from being a respected nurse making critical calls alongside ER attendings to someone whose voice no longer mattered. That loss of power shook me. I developed a chronic anxiety—an almost paralyzing fear—any time I had to speak to a provider.

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The Revelation

All I kept hearing was, “You have some unknown inflammatory condition we have not discovered yet.” And each day, I slipped further away from the person I used to be. Because there were no answers in sight.
Then one day—out of sheer desperation and a quiet intuitive nudge—I decided to look beyond the medical system and into environmental factors. That’s when I tested the air quality and mold levels in the apartment I was living in. The results were staggering. Toxic mold levels were off the charts.

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My home was poisoning me. The place I should have felt safest was silently killing me.

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Finding the Missing Piece

Once I became aware of just how toxic our environment was, I started digging deeper into mold illness—and suddenly, everything made sense. I was the poster child for CIRS (Chronic Inflammatory Response Syndrome), and it affects about 1 in 4 people. Mold is neurotoxic, meaning it can directly impact the brain and nervous system. For someone with CIRS, exposure to mold and other environmental toxins triggers a cascade of inflammation the body can’t shut off, even if the exposure is low level becasue of a genetic predisposition. This relentless inflammation affects every cell, every organ, every system.

If left untreated, it can become fatal. The inflammation causes dysregulation of cells, hormones, tissues, and muscles, eventually leading to systems shutting down. 

That diagnosis changed everything.

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The Long Road to Recovery

I began treatment with a mold-literate provider in New Jersey, and eventually made my way north to New Hampshire. That’s where the real work began—the slow, intentional, often grueling process of detoxing and healing.

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Things started to improve… until they didn’t.

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Again, I found myself at a standstill. Doctors had no further answers. But I wasn’t ready to give up. I poured hours into research, dug deep for the next clue, and found a new provider in Philadelphia—Meeting Point Health. They took one look at me, one look at my labs, and said, “You don’t just have CIRS. You have Lyme disease too.” It was the missing piece to my puzzle. They laid out a treatment plan and told me: "If you stick with this for one year, you’ll get 85% of your life back." I didn’t hesitate. I began treatment in February 2024. And one year later, I am exactly where they said I’d be.

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Loss and Hope

But the road was far from easy.
I lost my identity. I lost my job. I lost my home and lived in a trailer for three years—until my husband and I could build a mold-safe house from scratch. But I never lost hope. Even when the world didn’t believe me, I held onto one truth: I believe me. And I wasn't settling for complacency with no answers.

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My Comeback

This is my comeback story. I’ve been through Hell and back. And I’m still standing.
If you take anything from this, let it be this: The human spirit is wildly resilient. You are not broken. Your body is not betraying you. You just have to listen and advocate fiercely.
And never, ever stop fighting for your life.

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With Strength,
Sarah