Update: No Update

Goodness, it’s been awhile! Two months later, little has changed and, yet, simultaneously, so much has.

Three months ago, our home was deemed unsafe due to high levels of biotoxins. We moved in with my in-laws and have alternating continually between gratitude and ripping our hair out. You know how that goes.

The HOA and property management company still have not arranged for someone to come out and test for, and then remediate the problem, after three months of pestering. My partner is running for the HOA board along with a long-time neighbor and we will find out the results of the election this week.

My boyfriend and I are each spending around $950 on prescriptions per month (cholesyramine pure, EDTA nasal spray, and VIP nasal spray) to support recovery from mold illness. We both are feeling slightly better, but we are still works in progress. I am supposed to be on a paleo diet, but it’s been mostly beans, rice, onions, and lentils paired with whatever is cheap and in-season at the farmer’s market due to increasing prices.

My neurologist recently put my through a humiliating neuropsychological exam. My attention/short term memory and processing speed are well-below average, but I excelled in measures of general intelligence, such as definitions, pronunciations, and pattern recognition. I also had a 72-hour EEG test and am scheduled for an egregiously expensive panel to look for anti-NMDA receptor encephalitis due to the widespread swelling seen in my brain MRI.

My partner voraciously consumes the latest research papers and, for the last few years, he has been particularly interested in peptides and plasmalogens, both of which he believe to be the future of (personalized) medicine. Plasmalogens reside throughout the body and decrease with age and disease. Those with dementia, pediatric cancer, and all diseases in between have non-detectable levels. My partner has suspected that our plansmalogen levels may be depleted due to mold. Our doctor was shocked when he saw that we fell into the 2% and 3% percentiles, with biological age of individuals in their 70s and 80s. That same test also showed significant dysfunction of our mitochondrial markers. We have the energy and mobility of an elderly pair because–ta-da!–that’s the physical state of our cells. Sad.

For years, we were told it was psychosomatic or we were hypochondriacs. We have spend tens of thousands of dollars trying to diagnose the problem and recover. In just the last year, we have finally collected objective evidence of the significant damage to every organ in our bodies. At 33 and 40, we are both at a significantly elevated risk of developing Alzheimer’s disease and having a heart attack, based on our lab values and imaging. It scary, and it is disconcerting. Aside from the few doctors willing to read the publications, most doctors still mock us. Again, sad.

Our illness is believed to have originated from a roof leak that went undetected for at least eight years, resulting in a wall so filled with mold that the wood support beams had largely eroded. A functioning roof is the responsibility of our HOA, per the CC&Rs. Last month, we obtained legal representation. After calling nearly every office in the state, a string of referrals led us to an unadvertised specialist. They reviewed our extremely extensive medical history, CC&Rs, and correspondence with the property management company. And, they believe we have a strong case. We have our next follow-up meeting this coming week.

There are no guarantees, but there is now hope of justice, and of validation. After years of focusing intently on merely sleepwalking through the day, I’m hopeful that soon we’ll be able to finish an easy hike, tolerate a sip of wine, or stay up later than my 18-month-old niece. And, maybe one day, even start a family of our own. Big maybes, I know, but I’m hopeful all the same. Because without hope, what else is there? Fingers crossed.

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