I haven’t posted lately because my father recently died unexpectedly. He and my mother moved to a slightly warmer state nine years ago. My daughter and I helped them move in, but then her condition worsened over the years so making (and affording) the fourteen hour one-way trip was impossible.
I’ve focused many of my posts on my daughter’s one condition, POTS, hoping to help raise awareness for the same; however, as anyone who deals with chronic illness knows, in real life health conditions can’t be separated because our bodies don’t work that way. If one is dealing with the symptoms from multiple conditions, those symptoms are all connected and intertwined as they affect each other and their human host.
So in order for me to make my point I need to share more personal information first. About two years ago my daughter’s health had worsened to the point that she was only able to leave the house for doctor appointments or lab work. Her existing symptoms increased in severity, she developed new symptoms which affected every bodily system, her food allergies seemed to grow with each meal until there were only four simple foods she could eat, and her environmental allergies to wood smoke and cut grass became severe enough that we had to keep our windows closed due to our neighbors’ activities. She could not stand for more than a few minutes as her POTS symptoms (which began when she was 12 years old) had intensified so much over the past few years. She discovered she had lyme disease and a couple co-infections, which seemed to account for a lot of her symptoms and pain. However, she did not respond to the intense treatment as expected. If anything, her condition seemed to worsen.
Unfortunately, it took us a long time to identify an environmental element to her internal symptoms, but at least we finally made the connection – the doctors we’ve been to never considered the environment. Last year mold testing revealed that toxic mold was hiding throughout our twenty-seven-year-old house. Our research showed that our house could never be remediated well enough for my daughter and her severely compromised immune system, plus the two doctors we found to test her mold toxicity recommended leaving with only the clothes on our backs.
To make a long, sad story short, I finally found a mold-free apartment for my daughter and then I got rid of all of our belongings and demolished our house. We discovered she had developed multiple chemical sensitivities due to her mold toxicity (which is also called mycotoxicosis or just mold illness) which added more complications to her situation, but finally, over a year later, many of the food allergies and stomach issues she developed while living in that toxic environment are definitely improving.
But even though there’s been improvement, she can’t deal with any long-term exposures to toxic mold because she’s trying so hard to avoid anything that could potentially send her body spiraling back down to the point it was two years ago or to hurt her immune system again when she desperately needs it right now to help fight her other conditions.
Due to all of our research on toxic mold we are sure my parents had it in their first house and since they took all of their belongings with them into their new house that means they have it there too. So when my father died, even though our first reaction was to drive down to comfort my mother, we had to consider all these other issues – not to mention the difficulties of making such a long trip in the first place. My daughter has a port and has IV medications daily which last about four hours. We wouldn’t be able to stay at my mother’s house, nor would we be able to stay at a hotel because even if we managed to find one that didn’t have moldy carpets my daughter’s chemical sensitivities wouldn’t tolerate all of the smells (cleaning products, laundry detergents, etc).
But our emotional need to make the trip outweighed the obstacles. We decided the best way to do it would be to drive at night and since my daughter can no longer drive we’d stop at rest areas whenever I needed to sleep. I packed the Tyvek suits, masks, and gloves we would have to wear to hug my mother, pet her dogs, and to go on the tour of her house that she would want to give us and we would want to see.
As chronically ill people would know, the planning and preparation for the trip was endless and was made more difficult by grief and “brain fog”. Because there are too many overpowering smells where I work, I can’t live with her, so she had to manage on her own. It took her almost a week of making lists, writing post-it notes to stick all over her apartment to help remind her of all she needed, making piles and filling bags with her meds, IV meds, supplements, probiotics, IV supplies, and food. Of course all of that was going on while she dealt with the ever present symptoms and complications of her chronic illnesses too. Then she had to make post-it notes to stick in the car to remind her when to take which pills, when to do her port, and when to eat since the stress of the planning disturbed her sleep even more than usual. She had no choice but to skip her 4 hour saline drip for two days because there was no way to do that in the car, but that meant she would have worse symptoms to deal with during the trip.
So many people in my life have brushed off my comments about toxic mold – either not realizing, or not caring, how insulting and heartbreaking that is. Our story is somehow met with skepticism instead of compassion. Trust me, we would not have gotten rid of all of our stuff (the majority of it was handmade and meaningful) if there had been another way to do it without jeopardizing my daughter’s health. Many people’s worst fear is losing their home to a fire. Imagine if you had to make the decision to lose everything you have ever owned and loved. Yet how could you not make that decision after a doctor told your daughter that she is lucky to be alive after spending so much time in that home? So you walk away from those memories and belongings because of the small hope that it will make your loved one well after years of being ill.
Toxic indoor mold is not like the naturally-occurring molds that are found outside. It has “toxic” in its name for a reason. These molds produce toxins that can be deadly. Factor in chronic illness which has already weakened your immune system, and genetics that make you susceptible and unable to detox normally. In addition to the endless list of health problems they create, mycotoxins are also cancer causing. They are not something to be brushed off with the comment I hear so frequently, “Oh, everyone has mold…”
If you are a healthy person reading this post, be thankful that you can grieve for an unexpected death of a loved one without all of the extra baggage involved for a chronically ill person –especially a chronically ill person affected by mold toxicity.
[If you’re interested in finding out more about toxic mold/mycotoxicosis, check out the links I have here: https://juliejacobsendeck.com/links-2/ I am also currently writing another blog post with more detail and information- that’ll be coming soon!]
Julie Jacobsen Deck 