Do...or Die

So I decided that 2019 would be my "do or die" year. I would escape the mold and find a path to healing, or die trying. So we left our moldy house in humid and rainy inland PNW and the hubs found a job in Phoenix. He thought that with Phoenix being in the desert that it would be a dry, safe, smoke-free place to live. I was worried, gut instinct actually screaming "NO!" but his voice and my rational mind said 'hey, it's the desert, how could it be bad?'

How, indeed? Oh my freaking holy hell! Phoenix is the worst, most toxic-feeling place I have ever been. I could feel it like a sick cloud of funk from miles outside of town. See driving there we took a route that took us through some pretty remote and pristine high desert and mountains. It was beautiful and I could feel how clear and healthy the air was from inside the car. But just north of Phoenix, in fact right around Anthem where some people say is outside the Phoenix bad air bubble I started to sense an icky feeling. 

My eyes began to burn and sting, pretty soon burning so intensely that I couldn't even keep them open. My nostrils followed with a burning sensation that soon traveled to my nasal passages. Just as I snuffled out a breath after feeling the burning, my daughter with sinus troubles also mentioned that her nose, sinuses, and throat were burning and swelling. I quickly passed back breathing masks to both girls and swim goggles. I covered my own face with a wet washcloth to filter out the painful toxins and soothe some of the inflammation. I tried to breathe and focus but I could feel the panic setting in. If Phoenix felt this bad on the outskirts, how could we live here? My husband tried to reassure me that it was just something about this area, that it might be better closer to his new workplace. 

No such luck! All of Phoenix has a horrible cloud of toxins hanging over it, mixed with terrible pollution because of its rank as one of the top ten most populated metropolitan areas in the country and its physical characteristics as a valley bowl that loves to trap pollution and toxins between mountains. 

When we got to the hotel, I knew right away things were going to go from bad to worse. I just had no idea how much worse. To be continued...

The struggle is real..

...and never ending. I have come to accept that I am permanently damaged by mold, that my system will forever be hypersensitive to even the tiniest amounts. And not only mold...my system is so damaged and so compromised that I have become sensitive to bacterial toxins, toxic plants (i.e. oleander, foxglove, etc..,) that people actually use as landscaping in their yards! Also sensitized to chemicals of all kinds: cleaning, laundry, perfumes, fragrances, gasoline, it feels like the list is endless. I soon may need to live in a bubble.

I have a dream...

I had a dream...
No, it wasn't a worthy social justice dream that would benefit everyone, although on some days I do dream that mold illness will be recognized, treatable, and covered by both homeowner's and medical insurance which would certainly be a social justice issue.

But no, my dream is more selfish, localized, and only for me. I dreamed that I could find a way to recover some quality of life in this illness. I know the way it could happen, it used to be my healing dream before I realized that healing was not something that was possible for us. Now it's just my "find a place that is clear enough that I can feel okay enough to live like a semi-normal person who is happy sometimes and free of pain sometimes" dream.

I have found a couple of locations that feel clear and clean enough that I feel almost normal in them. I dream of buying land in these locations where I can build an unconventional house that I could feel almost normal in, and then live pain-free enough long enough to maybe start to heal. (See, I just keep hoping...stupid me). Okay, not to heal but to just feel what it's like to not have searing, burning, mind-numbing eye pain for long enough to remember what it's like to feel like a person.

It would be an unconventional life, but a potentially happy one. I have found a 40 acre plot that looks perfect in one location, and a 70 acre plot in the other one. This large of land would be necessary to be far away enough from other people's mold, drier sheet smells, car exhaust, wifi, EMF, etc., the list is too long...it goes on and on. But this level of remote and pristine is what is required for environmental control since I have become so sensitive to the tiniest amounts of everything.

Then I build two small, inexpensive metal sheds/garages. One is the wet house and the other is the dry house. They are connected by a walkway, possibly screened in for weather and animal protection in winter. The dry house is the safe place with no wifi, no water for mold intrusion, lots of windows for ventilation (but adequately protected and sealed for no leaks). This safe place is for sleeping and relaxing, a hopefully mold-free and mold-proof place where I could feel normal to sleep and (sort of?) heal. <slaps self, STOP it!> The wet house will have all the plumbing, in nice visible pipes so leaks can be seen immediately and stopped, prevented, mitigated, etc., This is where cooking, bathroom, laundry, all living things that require water would take place. It would be very simple and built by me to my careful and controlled specifications for mold prevention and microbial and chemical control because modern housing has failed me. What a dream!

However, I cannot achieve this dream. It would cost around $100K for the land and about $20K for the metal sheds, plus another $20-30K for the cement pad for them to go on plus water and electric setup and other incidentals to make them a livable space. So $150K give or take. Still far less than a conventional home that would be unlivable for me, but far more than I have on hand and definitely more than anyone would loan for such a cockamamie scheme. So it is the unreachable dream. And yet it would save my life, as surely as any cancer treatment saves a cancer patient's life.

Is it just me?

I used to think the world was doomed...that our experience was just one bad house or workplace away from happening to everyone. I thought that because it was so difficult to find housing that felt safe and clean to me that everyone was constantly being exposed to really bad stuff. I now realize that we have just been extraordinarily unlucky. We won the lottery of bad experiences so to speak, a one in a million chance of horror.

One bad house that was bad enough to damage us permanently. Everyone else is fine. I see them every day, walking through life without pain. They can go to the grocery store, go to work, go to their children's school and not suffer through the entire experience. It's just me, me alone who can't work because literally every workplace I've tried brings excruciating pain. Me alone who can't find a school that is safe for my children, safe for me to visit to see their events. Just me who can't grocery shop or clothing shop without horrific pain and suffering. Just me.

The beginning of my end

So, once upon a time I thought this blog would be a comprehensive and compelling account of our mold illness journey with a detailed account of how we got sick and a victorious account of how we eventually got well. Well, even before mold severely compromised my ability to function, I was a pretty lackadaisical blogger and writer. My best self never once finished a writing project other than forced completions for school or work. So why I thought my mold self could do this...

Anyway, I don't have much time left so I have decided to spam my own blog with whatever information I deem relevant at the time. It will be six years since mold destroyed our lives in March of this year, 2019, and I have finally come to grips with the realization that we will never again achieve a normal state of being. We cannot live in normal housing because we have become too sensitized to even the smallest particles of mold, the toxins we were exposed to have also made us sensitized to all kinds of particulate irritants from chemicals such as laundry detergent and drier sheets, to every possible biological toxic agent from simple bacteria that grow in foods to average household molds and bacteria that are ubiquitous. This puts us in the position of either being homeless and putting up with all the headache and inconvenience that entails to suffering with constant and chronic daily pain in regular housing.

Currently we are putting up with the suffering because my husband refuses to live like "homeless losers" and he does not suffer as greatly as we do so he can tolerate normal housing just fine. It is only our suffering and mostly mine that he has to endure to live in a "normal house" like a "normal human being" so it is easy enough to for him to put up with it. Meanwhile I have searing, burning eye pain daily, so bad that most days I cannot keep my eyes open...imagine that unbearable feeling you get when shampoo gets in your eyes but constant and unremitting. I alternate dripping ice water and refrigerated preservative free eye drops in my eye for the 4 to 5 seconds of relief it brings and spend the rest of my time with a wet rag over my eyes. My nose also burns from breathing in contaminated air but not as bad, it is a tolerable burning. I have chronic headaches and joint pain and brain fog but all of that pales in comparison to the eye pain.

Because of this I have decided I cannot go on. It has been six years of me hoping the eye pain would get better, of constantly trying to alter our environment to seek out a place where I could feel better. In clear air my eyes feel fine, sometimes I have found places clear enough that my eyes felt almost normal and I remembered what it was to feel happy, but those places are so few and far between and they are never places I can "live." It has become truly hopeless for me, so as soon as I can work up the gumption and the right plan, I will euthanize myself as is my right as a chronic sufferer of an incurable condition.