It Wasn’t Anxiety, It Was Mold
It was a typical Tuesday morning in February, and all was going according to plan. The kids were dropped off at school, and I was on my treadmill trying to squeeze in a workout while they were gone. About 20 minutes in, I noticed I was having trouble “completing” a breath. I kept gasping for more and more air to no avail.
Things were getting weird, so I did what most people do when they think they’re dying. I Googled my symptoms on WebMD. (Being that it was 2009, I had to go to my desktop to do this.) A red screen came up and advised me to dial 911. A wave of panic washed over me and my heart started pounding. “Maybe I am having a heart attack,” I thought. I still reasoned that if 911 was needed, it would be obvious. So I vacuumed. My breathing calmed down a little, but was still not normal. At preschool pickup, I cornered a dad who was an EMT, and described my symptoms. “Sounds like asthma,” he said.
The doctor agreed, and I was sent home with an inhaler and medication. But that was only the beginning. At the same time, I began feeling dizzy nearly all the time. Disoriented, off-balance, like I just got off a boat. I figured it was definitely a brain tumor, but decided to avoid any kind of medical diagnosis to confirm the bad news.
After several months with no change, I ruled out the brain tumor. But my dizziness ebbed and flowed for several years. One ENT dismissed my symptoms as anxiety, while another ordered several horrific tests that yielded inconclusive results. Yet another wanted to do extensive surgery on my sinuses and nose. “How will this help the dizziness?” I asked. “I’ve already spent too much time in here,” he said. “Karen will get you on the surgery schedule.” I saw four ENTs in total, and all diagnosed Meniere’s Disease. Their suggestions for treatment were to go on a low-salt diet, and just live with my dizziness.
My husband says I have not been the same person since 2009, when my asthma and dizziness started. Being unable to breathe or stand up does have a way of humbling you. I was able to muddle through life one day at a time, satisfied but not thrilled with the doctor’s diagnosis of dizziness, asthma and anxiety.
Things came to a head in August 2017, when things worsened but eventually led to answers and some resolution. My son was having a sleepover, and I decided it was time to tackle the mold in the basement. There had been water in several areas, and there was visible mold in several nooks and crannies. One particularly disgusting area was under the basement steps, where there were several garbage bags of children’s clothing soaked with black mold. I removed them, and bleached the walls and floor. (As an aside, I did not wear any protective equipment during this endeavor. To be fair, I didn’t know better. But it was still pretty dumb.)
About a week after the cleanup, we had plans to go out to dinner for my birthday. Feeling nauseous and weird, I declined. As fall progressed, my dizziness was off the charts, so much so that I avoided leaving the house. I had intense “spongey” sinus headaches, nausea and an overall bad stomach, leading to a loss of 20 pounds. I went to three different doctors who said I looked fine and gave me Flonase. Things escalated until I could barely get out of bed. I tried all kinds of “fixes,” i.e. going on anti-anxiety meds (maybe I was crazy), getting nutritional IVs (over $200 and I felt worse). All the while, friends and family were asking “What is wrong with you? Like really, what is wrong?” I was avoiding going to my functional medicine doctor due to the cost, but in late November I finally bit the bullet.
“Has your house ever had water damage?” she asked. Boom. There it was. My symptoms started within days of the mold cleanup. My mold markers came back high, and an inspector said we had one of the moldiest basements he had ever seen. (Our basement, for the record, spans the entire length of our house and was stuffed with crap…toys, baby clothes, old furniture. Remediators required three full-length dumpsters to remove everything, a fact I am not proud of.) Remediation cost upwards of $30,000, not to mention the financial and emotional cost of everything we lost. Insurance did not cover any part of it. But I finally had an answer as to why I began getting sick in 2009 (shortly after we moved in) and why it worsened with the basement cleanup.
I went to my parents’ house during the two-week remediation process. I felt so awful that I began to wonder if it wasn’t mold, that I was really dying of some horrible wasting disease. My dad actually sent me to the ER because he was so alarmed at my symptoms. (They said my labs were fine and sent me on my way.) A few days before Christmas, the fog cleared, and I started getting my energy back.
The recovery since then has been up and down. I experienced a “re-molding” the following November when I assembled a new artificial Christmas tree. (It smelled like mold, but since it had just been delivered, I thought there was no way. Uggh. When will I learn?) My immune system went haywire for a few months, and again felt extremely lethargic. I likely still have some form of PTSD related to the many months of extreme, unexplained illness. The loss of control and helplessness has left lasting scars.
The mold also did a number on my immune system, worsening allergies and weakening my defenses against illness. I catch viruses all the time, which is not great for my ear problems and asthma. (The dizziness and asthma are unfortunately here to stay as well.) But I am so glad we finally figured out the source of my symptoms and have reduced my exposure as much as possible.
And I do believe there is a reason for everything. My frustrating experience made me want to help others, and now I am a health coach. Having struggled through a debilitating illness that was dismissed as “anxiety,” I completely understand how patients feel overlooked. And I know how it feels to be desperate for answers and relief, which is why I am now 100% focused on helping others find their answers and solutions. I find it AMAZING that during all of those doctor visits, NOT ONE EVER MENTIONED MOLD. NOT ONE. It makes me wonder how many people are suffering and have no idea why.
And hey, my journey came in awfully handy when my daughter, Grace, began having alarming symptoms when she went off to college. “I feel like my battery is at 10%,” she texted. “I can’t get out of bed.” (This is a kid who held multiple jobs, took summer school classes and graduated cum laude in three years. Laziness was not an issue.) Her labs showed nothing. I suspected mold, but she denied seeing it in her apartment. One night, she moved a mirror and found black residue on her hands. She began sending me photo after photo of items covered in mold. We hired an inspector, and sure enough mold was in her walls, her carpet, her curtains, and on most of her personal belongings. She moved out immediately, losing most of her things in the process. (Another painful part of the mold journey.) She felt better immediately upon leaving. We notified management of the inspector’s report, and their solution was to put a dehumidifier in the apartment. I felt like standing in front of her building with a sign to warn other kids and their parents…most people would never suspect their living environment as the source of their illness.And clearly the apartment management did not care about the well-being of their young tenants.
My daughter and I are now known as the “mold experts,” the people you call when you have a mold problem. For a while in the 1990s, I was the “skunk expert” due to a stubborn dog with a penchant for antagonizing skunks...not sure if being a “mold expert” is a move up or down. But we have learned a lot and are hoping to help others avoid the learning experience we wish we never had.
