Ramblings Into The Void

Last year ended on a high note. After being dragged, from many years, through a rotating door of mysterious symptoms, my partner and I found evidence that both of our health issues were due to significant, decade-old water damage hidden behind the drywall. We began treatment to remove the mold from our home and our bodies, which we confirmed are genetically ill-equipped to recognize and eliminate the toxins. Hooray!

We gradually improved and then plateaued. By mid-January, we both felt awful and began failing our quick-and-cheap mold exposure test. We re-tested the environment and, lo and behold, more mold.

I was so excited to enter the new year. 2022! I believe the pandemic is gradually coming to an end. I look forward to being around people, taking classes, traveling, and being creative. I thought this would be the year I would get my life back. And here I am, just over a month in, already feeling completely defeated.

For the last month, I’ve kept thinking about the day in March 2019 when the gravity of my illness hit me. A new primary care physician diagnosed me with chronic fatigue syndrome and prescribed my low-dose naltrexone (LDN). After my first dose, I felt the most well-rested I had in four years. I felt alive. I felt like myself again for thirteen days. And then the medication stopped working. I’ve tried again since, but nothing.

I had been on the decline and in deep, deep denial for years when, in late-2017, I met with my personal trainer and began shaking violently while doing body weigh lunges. My muscles were disproportionately sore for a week. Seemingly overnight, I went from lifting heavy to unable to walk to the mailbox. My boyfriend had been insisting for years that something was wrong. I had been blaming my “aging” 20-something body.

Eighteen months after collapsing at the gym, I felt some relief with LDN. I remembered how it felt to be healthy. My body remembered, and I realized it was still capable of at least charading wellness. In March 2019 I committed to doing everything in my power to reclaim that feeling. Three years and over $75,000 later, I’m still committed but it’s discouraging to look back and see that–despite how much I have learned–I’m not too far off from when I began.

Over the last week, we have wiped every square inch of our home with sporicidin. Our home reeks of a freshly-cleaned airport bathroom, with fleeting hints of both hope and despair. Maybe it was residual mold, maybe there is another major leak in the wall…

We live in a condo and the HOA owns everything outside our drywall. While residents complain of leaks, rats and falling branches, just in the last year, the HOA has spent our limited reserves on an upgraded tennis court, astroturf lawn, and teakwood pool furniture. My boyfriend has been trying to run for the board, and the current president is blocking elections, likely because he fears being booted from his “throne” after twenty years.

We’re planning to retest for mold in a few months. If the sporicidin works, we’ll be okay, at least until the next leak.

We’re planning to get on the HOA board and make some changes along with fellow pissed off residents. If that happens, hopefully we’ll have a safe and healthy home and help keep it that was.

If the next mold report comes back positive and the HOA remains unwilling to help, our last glimmer of hope is an article passed along to us: Jury awards Florida woman $48M for sickness caused by mold. She was diagnosed with chronic inflammatory response syndrome (CIRS), which is what my boyfriend and I have also been diagnosed with. I don’t know all the details of this poor woman’s case, and I don’t know whether we would have a leg to stand on in court. However, we have years of medical records, records from the contractors hired by the property management company evidencing the leaks were the fault of the builders/contractors, and evidence that our ailment is at least largely due to living in a water-damaged building.

To say I don’t like conflict would be the understatement of the year, and I have no desire to get into a legal battle. Yet, it’s reassuring to know that may be an option if all else fails.

We’ve lost the best years of our lives, opportunities, career advancement, social life, and physical health including permanent damage. How do you even place a monetary value on those things? If we could just recoup our medical costs over the last 6 years for me and 11 years for my boyfriend, that would be enough for us to leave this nightmare behind.

Well, here’s to hoping 2022 gets better from here, whatever that may look like!