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.

Our Timeline: Part 1 of the Mold Saga

March 2013
We move into a 2300 square foot, two-story family house on 1.25 acres. It is affordable rent, ample size, has a play area for the kids, and a separate fenced yard for the dogs. The layout is roomy with four bedrooms, formal and informal dining, bonus room, family room, and a huge deck. We think we are in heaven!

April 2013
My oldest daughter is rushed to the emergency room on a late Saturday night with a severe headache that is diagnosed as a sphenoid sinus infection. We bring her home with antibiotics and nasal spray, thinking nothing of it. A late cold that got into her sinuses. The following Monday the hospital calls to say that her blood sample cultured something and she was septic, that we should follow up with Children's in Seattle. She is hospitalized for half a week at Children's Hospital in Seattle with intravenous antibiotics to treat the sepsis and sinus infection. They cannot identify what grew in her blood culture. We make no connection to the house whatsoever at this point.

July 2013
I believe that I have had a recurring eye infection for a month. I forgo wearing contacts for a week, and change them out. When that doesn't help or improve the situation at all, I make an appointment with my eye doctor who prescribes antibiotic drops. After 4 followups throughout the month of July, the doctor determines that the inflammation is not bacterial in nature, prescribes lubricating drops to soothe, and tells me to give it time. I stop wearing contacts and make up completely because the inflammation is so painful I don't want to aggravate it further. I make no connection to the house of course, I actually think it is something viral from our chickens, cats, dogs, or tortoise.

August 2013
My eyes continue to bother me greatly, but I think it is related to contact lens wear and eye makeup, and some sort of allergy or infection. Then one night as I'm helping the girls get ready for bed, I notice my younger daughter's eyes are red and inflamed. I ask her how they feel and she confesses how much they hurt and have been hurting for a while. I instantly check my other daughter's eyes which are also red, both in the whites of her eyes and her eyelids which are kind of puffy. She says that her eyes only hurt a little though but that her head hurts more.

I immediately schedule an appointment both with their pediatrician and my eye doctor. We see the eye doctor first. She says there is no infection in their eyes but she isn't sure what is causing the inflammation. She suspects allergies and refers us to an allergist to get tested. Next we visit the girls' pediatrician. She is baffled by how red and irritated their eyes look, noting that inflammation is in the eyeball itself, the lid margins, the eyelids and also notices that their nasal passages and throats are both very inflamed and red. Their doctor asks them questions I hadn't even thought to ask and discovers that both girls have been experiencing headaches, sore throats, and pain in their eyes.

I am distraught. As a mother, it is my job to protect my children and keep them safe and healthy. I cannot figure out how we are all sick with seemingly the same thing and yet no contagion can be discovered in tests. A light bulb goes off, if it isn't a bacteria or virus, there must be an environmental culprit we're all being exposed to. The doctor prescribes steroids in three forms: steroid eye drops, nasal spray, and oral.

We go home and I begin to research on the internet. Mold comes up in my searches often. I follow the links and it's like missing pieces falling into a puzzle. Every single one of our symptoms are described on these sites as being caused by mold. After consulting with my husband, we contact our landlords with our suspicions.

September 2013
Our landlords notify that they have no money. They are poor missionaries for their church and have no income of their own. They don't seem to grasp the severity of the situation and suggest that our symptoms must have other causes because they are sure their rental home is safe and clean. After all, there is no visible mold in the home. Upon their refusal to pay for an inspection we start to research doing one ourselves. I contact multiple companies and find out that the cost of mold testing is outrageous and prohibitive. Some inspectors even tell us that they won't come out unless the landlord approves it. Our landlords refuse. I finally find one company that will do a free preliminary inspection and will work out a full inspection on a payment plan. I schedule the inspection.

The inspector comes out, and immediately identifies on sight several problem areas. The dryer is vented into the attic, not the outdoors as it's supposed to. The crawl space has standing water and there is evidence of past water leaks with shoddy patching throughout the house. The worst place seems to be the master bedroom which has a waterline underneath it extending from the bathroom. The property is also surrounded by trees, meaning that it never gets full sun to get properly dried and aired out. In the damp Pacific Northwest, this is a problem.

I agree to move forward with a full inspection and pay the $800 deposit. The inspector brings in numerous tools: moisture meters, air collection chambers, infra-red cameras, and much more. After a detailed four hour inspection of the house, he lets me know that he will have the preliminary results for me within a week.

Every single day is torture. I sit on the couch in pain, my eyes throbbing like I'd dropped shampoo in them. My head aching and feeling full and swoozy, there is so much pressure I wonder if my brain is swelling. The girls complain of headaches and sore eyes but I make them stay outside and "play" as much as possible to avoid being in the moldy house. They go to school under protest, only because I want them out of the house as much as possible. My kindergartener cries; she is anxiety-ridden and doesn't want to be at school.

Her anxiety gets to be so great that I pull her out of school. It's just kindergarten and she is at the extreme young edge of the cutoff so pulling her out until next year seems prudent. My older daughter who is gifted and talented and has always thrived at school asks to be pulled out too. She has constant headaches and eye pain and doesn't enjoy her once favorite place anymore. Before the mold house she was a 2nd grader who read at a 7th grade level and did 5th grade math. She was in gifted programs and lived for school. Now she won't pick up a book because it hurts too much, she doesn't chatter anymore, and is lethargic.

I still want her out of the house, not realizing at this point how ubiquitous mold is in the damp, rainy Pacific Northwest, especially in an island surrounded by water. Her school is likely moldy as well as I later learn an overwhelming majority of buildings in this area are.

October 2013
I get the results back from our mold inspection. Our inspector is very concerned. "Run," he says, "don't walk, run!" He says the spore counts are extremely problematic in our home; exceeding the outdoor levels a hundred times over. He also says that the molds that were identified inside are highly problematic; the most concerning is the highest levels of stachybotrys he has ever seen. He says that it is a heavy and sticky mold that doesn't usually become airborne and often does not show up on mold tests because of its sticky and clingy nature. He tells me that because it is showing up in such high numbers on both air tests and mold plate tests that it must be in extraordinarily high numbers. The high concentrations explain why we became so sick in such a short amount of time. Many people take years to get to this point of damage. In four months we have decimated our health. At this point I still have hope though...

To be continued...

Some interesting mold illness info...

http://selfhacked.com/2015/09/02/the-root-causes-of-mold-problems-msh-sirt1-socs3-and-hypoxia/

I am mostly sharing this for my on reference so I can go back later and examine the treatment options given. Once we are in a mold-free environment I hope that following these protocols will help us recover.

If you have a scientific mind and are interested in what mold does to the body, take a look at this article. It has very precise and in-depth research on the genetic and biological factors in mold illness.

Time to update again

Wow! It has been more than one year since I posted on my blog. In that year a lot has happened. I sort of completely fell off the internet due to everything that was going on and I never got to really put everything on here that I wanted to. I had intended to write up a complete timeline of events detailing everything that happened to us from the start of moving into the moldy house (my children have since dubbed that house Moldemort: rhymes with Voldemort, and it's a fitting name, given that house is the greatest evil in our lives) to moving out of the house, to the subsequent educational journey of heartbreak, loss, and misery that our lives became.

But in August, 2014, when the last post on my blog was written, shortly after that my husband lost his job due to illness and having missed so much work. (And also because I think the mold changed his thinking and personality to the point that he alienated a lot of people and coworkers which ultimately led to his dismissal. He is a grouchy, pain-ridden, and at times unbearable old sod sometimes.) That led to us becoming homeless from September 2014 until January of 2015. A horrible black spot in our lives that definitely puts 2014 on par with 2013 for being the worst year of our lives. I can't ever decide which is worse, the year that we moved into Moldemort and my daughter was hospitalized and we all became so sick and started this terrible journey, or the year that put the icing on the cake of losing all our worldly possessions to be followed with losing our jobs, home, and everything.

Either way, it completely derailed everything. I also wanted to post a complete list of our symptoms with a timeline of doctor visits, hospitalizations, and illnesses, but being homeless makes spending time on the internet a near impossibility. Because we couldn't stay in the shelter during the day, I did spend a lot of time at the library but I was in such a dark and miserable place that I couldn't find the motivation or will to update my blog. I researched the internet for mold information (learned so much), filled out applications for low-income housing and signed my kids up for every available program I could find: free lunches -check, school supply aid - check, food stamps - check, affordable housing - tried, but there is so much need and so little available.

But, my blog was obviously a low priority. Facebook was painful - I couldn't look at all those posts of happy, well-adjusted people without wanting to just break down and cry. And it all seemed so unfair. So I abandoned social media, I did update twitter on occasion, mainly because no one I know in real life follows me on twitter. It is easy to bare your shame to people who have no earthly idea who you are and I needed somewhere to document some of the heartache that was going on. Doing it anonymously was the only way that seemed to make sense.

I don't even know where I'm going with this blog post. I just wanted to start posting again. So much has happened and I already feel like I've lost years of my life to this mess.

I put up a GoFundMe page http://www.gofundme.com/qk2enswd with very little expectation. I follow numerous mold forums on Facebook and they posted that they were accepting submissions of fundraisers to their page. I read the stories that were on there and so many of my fellow "moldies" experiences resonated with me, and I thought, why not? We may never get past this if we don't ask for help and to be included on this page is an opportunity I shouldn't pass up. I never dreamed that so many people would come forward to help us. I am a fairly private and introverted person; I don't naturally make connections with people easily. So when my page was flooded with donations and I received an outpouring of messages of support and love, I was blown away. Literally. I never expected this at all.

It has enabled us to move into a new house that I hope will stay mold-free and safe for us. We will have very little to start but with time and help, we can finally move forward into a life of normalcy and stability. Thank you all for finally giving me HOPE!

More Loss...more heartbreak

Periodically I remember things I've lost due to the mold and I feel the need to document these things somewhere so in some small way, they're still with me.

• The tooth fairy pillow my grandma sewed for me: soft white cotton fabric with tiny yellow flowers sewn on a six inch pillow that was hemmed with aged white lace, and a small pocket sewn on top with a white felt tooth on it. 
• The busy book sewn for me to use in church by my grandma: Pink, double sided pages with numerous sewn on "activities," a fuzzy brown bear with black, button eyes, little blue shoes with real laces to tie and untie, an apple tree with puffy red felt apples with snaps on the back to snap and unsnap on their tree or collect in the pocket bucket in the corner of the page. 
• The real paintings of beautiful red haired ballerinas, reminiscent of Degas but much more beautiful and ethereal given to me by my grandma because the red hair reminded me of her. 
• The Night Before Christmas book given to me by my aunt and uncle when I was but a wee baby less than one, because the babies in the pictures had red hair, and I had red hair. 

So many more sad memories will come later. 

Why Do We Throw It All Away?

The question I am most often asked, and even more often know people are wondering but too shy/polite/whatever to ask, is "Why couldn't you save anything? Isn't that a little extreme?"

This post explains it better than I ever could, especially while still trying to recover from the experience. What we were exposed to was Stachybotrys, the infamous most toxic black mold that is mentioned in this post. It is notoriously impossible to clean and eliminate and because of the nerve damage and mitochondrial DNA damage that it does, it hyper sensitizes your system to the point that you cannot tolerate even the most minute amounts. Which, as you can see, minute amounts are ubiquitious when dealing with this particular fungi.

Stacybotrys is greenish black and slimy in color. When I would wipe out bathroom cupboards or behind toilets, the cloth would come away coated with slimy greenish black fuzz. My younger daughter would frequently miss the toilet with her toilet paper and so crumpled wads of toilet paper would land behind and next to the toilet. If they were left there for more than a day or two (because I didn't see them) just the humidity in the house and the cellulose in the toilet paper would cause it to be covered in greenish-black slimy mold. At the time I didn't know what was going on. I hadn't done the research to know it was mold, it didn't look like what grows on cheese or in old yucky shower grout.

Boxes and books that were stored in a musty, damp garage during one of our interim locations grew rings of slimy greenish black mold that looks identical to pictures of Stachybotrys I've seen online. The most toxic and damaging mold in the world has really wreaked havoc on our lives.