I used to love a margarita on the rocks with a twist. At some point in my late 20s, I went from the carefree life of a young healthy person enjoying margaritas to developing a myriad of weird health issues. It started with more minor nuisances like chronic insomnia and a hormonal imbalance. At the time, I was a public health graduate student and was lucky to have found a very affordable apartment built in the 1960s that offered extra amenities such as leaks and a roach infestation.

In my early 30s, I left the roaches and moved into a basement apartment in a home built in the 1930s. It had just been renovated following a flood that left the basement submerged in water. Shortly after moving in, my hair began falling out by the handfuls. I developed severe gastrointestinal problems and my hormonal and sleep issues worsened to the point that I knew something wasn’t right. The public health professional inside me was constantly trying to connect the dots between these unexplained symptoms. My healthcare providers brushed me off and only offered band-aid solutions that came in prescription bottles. A year later, my soon-to-be husband and I moved into an apartment in a brand new building. While we were living there, most of my symptoms improved significantly.

I continued to feel better for several years until one fateful evening in February 2016. I met up with some colleagues for dinner and drinks during a work retreat. After drinking one very normal sized margarita, I quickly became so disoriented that I considered the possibility that I had been roofied. I somehow managed to walk back to my hotel room safely and woke up the next day with the worst hangover of my life. A hangover that ended up lasting months.

I struggled to make it through each day. I was so tired ALL the time no matter how much I slept. I seemed to have traded chronic insomnia for chronic fatigue. I was so dizzy that I felt like I was on the Graviton spaceship ride that spins in circles until the floor drops and you pray you’ll make it to the end without vomiting. I had other neurological symptoms including unrelenting brain fog, tingling in my legs and feet, painful electric shocks, and even hallucinations. At night I experienced visions of herds of spiders crawling in my bedroom. On one such occasion my husband watched in disbelief as I tried to attack these “spiders” and ended up smashing our framed wedding Ketubah (traditional Jewish marriage contract). Luckily, my husband didn’t rush me to the psychiatric ward although I’m pretty sure it crossed his mind.

When things didn’t improve, I went to doctors and specialists searching for answers. My lab work and MRIs were all normal. Most providers recommended antidepressants and I hadn’t even told them about the spiders. I knew there were explanations for what I was experiencing besides mental illness, but no one seemed to understand. I felt very alone. It’s not like I had a “visible” condition or even an actual diagnosis. I may have looked fine, but each day felt like a nonstop ride on the Gravitron. I had a full-time job that I loved, one that coincidentally involved providing support to patients with chronic, rare, and INVISIBLE diseases. Luckily my employer was supportive and I somehow managed to continue working through a constant state of fog. More importantly, I had a five-year old daughter who needed a functioning mother and I so badly wanted to feel human again.

In June we had a vacation planned to visit my husband’s family in Martha’s Vineyard. The mere thought of travel was exhausting. I almost stayed behind but somehow managed to get myself packed and on a plane to Massachusetts. Within a few hours of landing, I started to feel like myself again. I went from four hellacious months to feeling good, even great. I could think clearly, the world around me had stopped spinning, and I actually had energy. The next day we went to our favorite beach. As I sat on the beach watching my daughter practice her cartwheels in the sand, I started thinking more about this unexpected transformation. It occurred to me that we had moved into an older house several months before this mystery illness started, and we had had our share of leaks while living there. And now that I was away from the house, I was suddenly feeling much better. A quick search on my phone suggested that most of my symptoms could be linked to exposure from toxic mold. I felt like I was finally connecting the dots.

After five blissful days of feeling human again, we returned home where I quickly found myself back on the dreaded Gravitron. We hired a mold remediation company who found water damage and mold. Over the next several months, we remediated mold in multiple places, replaced all of the plumbing, and even renovated the kitchen thinking that these steps would solve most of my issues. I finally found a knowledgeable doctor who confirmed that mold was contributing to my illness. She ran comprehensive lab work and started treating me for a condition called chronic inflammatory response syndrome (CIRS), but is also called toxic mold illness, biotoxin illness, and environmentally acquired illness.

While CIRS isn’t recognized by the mainstream medical community, it is very real to me. I learned that it made my body unable to handle mold and other environmental toxins, leading to systemic inflammation and the many neurological symptoms I was experiencing. People with CIRS usually have certain genes and underlying infections like Lyme disease that make them susceptible to the condition, and my labs indicated both of these. Under my physician’s direction, I made dietary changes and took supplements and a prescription medication called cholestyramine to lower inflammation and help my body get rid of the toxins that were making me so sick. But, even after putting so much effort into fixing our house and my body, I continued to feel broken.

Since I wasn’t seeing any noticeable improvements, my doctor encouraged me to consider moving, but I didn’t want to listen to her. After several months, I finally came to the realization that my body needed a clean start. I eventually convinced my family to walk away from the home we put so much of our savings into fixing. We ditched many of our belongings, including some of our most sentimental possessions, to avoid bringing invisible mold spores from our belongings into our next home. My daughter parted with her favorite stuffies, books, and her beloved swing set in the backyard. It was hard on everyone, but the decision to move forward ultimately put me on a path to better health.

Looking for a house without mold can feel like looking for a needle in a haystack, or a unicorn perhaps, but we eventually found a home where I could finally begin to heal. We enlisted the help of two indoor environmental professionals (IEPs) who inspected the house from top to bottom, ran air quality tests, and helped us take the right steps to get the best air filtration possible and minimize moisture and water intrusion. I cannot say enough about the benefits of working with IEPs who understand mold sensitivities and I will forever be grateful to one such individual who is no longer with us, may he rest in peace.

Mold and other environmental toxins are difficult and even impossible to avoid and continue to present many challenges in my life. But having a diagnosis and learning strategies for managing my house and my health has made a huge difference. There are some days that still send me back on the Gravitron ride, but my symptoms are much more manageable now. I haven’t had any visions of spiders in several years and my nine year old has a mostly functioning mom.

I hope to make more people aware of the dangers that mold can cause and bring awareness to this very real, yet often unrecognized invisible illness. I share my journey to encourage others to advocate for themselves until they find a root cause or diagnosis for their illness. The biggest hurdle was not knowing why I felt so awful.

If you think that mold and environmental toxins are damaging your health, you can start by looking for knowledgeable IEPs and healthcare providers to help you. You can find helpful resources, qualified professionals, and support groups through the International Society for Environmentally Acquired Illness. Now that I have a diagnosis and a supportive team of professionals to guide me, I can take steps to minimize mold and its effects. Maybe one day I’ll be able to enjoy another margarita, but I’m not quite there yet.