In My Words: How somebody asking where I live saved my life

In My Words: How somebody asking where I live saved my life

Many times in this series, I have referenced my own personal health journey. It is the experience that informs so many of my opinions about our system of health “care” in the US. It’s a story I’ve alluded to many times, but you deserve to hear it in its entirety. How I went from a triathlete to not being able to walk a block. So here we go….

In 2020, I was a young and healthy woman. I was doing triathlons and training for a 10 mile race through Philadelphia. I was on the road most weeks in the earliest days of building Stix, meeting with investors and partners. I was active.

Covid hit and I panicked – how was I ever going to survive lockdown? Jokes on me, that was the least of my problems.

On April 15th, I woke up with a sore throat. I had been planning to donate plasma for my uncle who desperately needed it, but with so little known about this new virus the hospital wouldn’t let me. My sore throat turned into a tight chest and eventually a fever.

This was before covid testing and before we even knew how the virus was transmitted. I called my doctor, but for weeks they repeated the same message. “There was nothing they could do. Assume it was covid, stay inside, don’t come into the office.”

I was quarantined for 6 weeks before I finally called a different primary care office. “Go to urgent care immediately” they said. “This is not normal. Something is wrong.” At urgent care, they ran every test under the sun. No, it wasn’t covid, it wasn’t mono, it wasn’t the flu, or a bacterial infection. My chest x-ray was clear and the new experimental covid test came back negative. Yes I was sick, no they didn’t have answers. “Go see your PCP.”

A few days later, I walked into the new primary care doctor’s office. They found elevated levels of inflammation and a light indication it was autoimmune. “There’s nothing we can do. Go see a rheumatologist.”

This part of the story could go on for a while – bouncing from specialist to specialist. 
Going on the lupus drug Plaquenil that people were hoarding for covid. Starting immunosuppressants and being afraid, once again, to leave the house.

The endocrinologist who misdiagnosed adrenal insufficiency, made me carry around vials of cortisol and told me if I had so much as a cold or a badly scraped knee I had to get to the ER immediately or else I would die.

I was jetting to hospitals around the country in the height of covid before masks were required. Fearing for my life.

My body continued to spiral out of control. My hair was falling out, my muscles atrophying. I couldn’t do even the most basic things – shower, fold laundry, walk around the block. Whatever was happening was starting to spread to my organs. My kidneys. My bladder. They looked everywhere. We would bounce from lupus to a tumor, to no idea, and back to the drawing board again.

I will, one day, write more about the doctors who both kept me going and kept me down at this time. The magic Mayo Clinic hospital system that controlled the insurance companies (instead of vice versa), doctors who actually communicated with each other, the people who believed my symptoms, even though they couldn’t find a cause. I will also write about the trauma of being told to reduce my stress, quit my job, lose weight, and just ignore the ever-worsening labs and organ dysfunction. The loneliness of being sick. The power of a partner and a family jumping into action.

Then, a friend sent me a memoir recommendation -- “The Lady’s Handbook to a Mysterious Illness.” In it, a young, healthy woman gets a UTI and everything collapses around her. She spends a decade sick until she finally goes to the Cleveland Clinic Center for Functional Medicine.

By this point, I had been to every specialist under the sun. Every -ologist, acupuncturist, herbalist, and integrative doctor within 1500 miles of Philadelphia probably knew of my case. But going to Cleveland Clinic saved her life, so I would go to the Cleveland Clinic.

After 6 weeks of waiting for my first Zoom appointment, I logged in to chat with the nurse practitioner who would manage my case. After spending just 45 seconds recounting my symptoms, she asked where I live.


“In an apartment?”

“A house.”

“What kind of house?”

“A rowhouse.”


“No, from 1819.” 

She paused. Looked up from whatever notes she was taking. “We will need to run labs, but I’d bet my career that this is mold toxicity.” The labs confirmed it. I was having a textbook response to the toxins that are released by mold. Two years after my sore throat, I finally had an answer.

I left the house I called home for 3 years. My partner sold it. He threw out everything we own. We bought a renovated house that had been stripped to the bones. He installed air filtration systems and wiped everything with ammonia. In the middle of winter, we stood in our new backyard using a vacuum to get any last particles off whatever we had left.

Then I started to heal.

One day I’ll write a book to tell my story loudly. From the rooftops. I’ll talk to experts about how doctors that listen and that think holistically will be our future. I’ll explain how to be your best advocate. I’ll probably infuse it with a few tears, some pain, and a hell a lot of resilience.

For today, I’ll leave you with this. A provider asking where I lived changed everything. But I saved my own damn life.

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