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...

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. 

So I had a "sad"

And I had to document it somewhere. It felt almost like being punched in the gut. When we were getting out of the moldy house (the first one) and going through our stuff at the second moldy house, I was undergoing a lot of confusion and brain fog due to the mold and was constantly in a state of near panic, a sort of survival mode - fight or flight, and so I don't have the best memory of what I packed and saved and what I threw out, or simply never got unpacked and was hauled to the dump.

So, now as we recover and survival mode and its accompanying feelings of panic and confusion wear off, I have moments of clarity and memory and certain items pop into my mind in flashes. The other night it was my "blanky" that my dear, beloved, departed Grandma made for me as an infant. She sewed it with her arthritic hands, fluffy and pink and quilted, and imbued with a grandmother's love. I was like Linus from Peanuts with that blanket, I carried it everywhere. It was my constant companion, my comfort, my protection, my safety. By the time I either outgrew it or my mom finally talked me out of it, it was a sad, threadbare little thing, more gray than pink, with bare patches worn clean off.

I also had a busy book hand made by my grandma with my name on it. It had activities with things to feel, button, open, hide, they have books like that now for babies but they're store bought and mass produced. This was handmade again by my grandma's arthritic hands with character specially for me.

Tonight, as I brushed my teeth, it flashed in my head. My older daughter, who has always been smart and advanced and precocious, won the Science Fair in first grade. She won overall for Best New Scientist with an amazing project that she came up with all on her own. It was on bacteria, and she bought petri dishes, swabbed items around the house, had a control and a test group, and it was amazing! She did it all on her own, she learned so much, she researched at the library and online, she did tests and experiments and checked on it every day for a month. The night of the science fair they announced all the first grade winners, 1st, 2nd, and 3rd place and her name wasn't among them. She was crushed. I was a little shocked that her project didn't win for first grade...until they announced her as an overall winner for the whole school.

That medal with her name engraved on it, that is gold and says "Best New Scientist" plus the shiny laminated certificate, all gone. I almost can't catch my breath when I think of it. There was also a letter about what a wonderful and advanced student she is with a little pin. Gone. Her citizenship award for going above and beyond...gone. Her skating pins for achievements in figure skating. Gone.

Maybe it was in a box that was saved. But probably not, and I can't remember for sure. And I can't go look in the storage and find out. Only those who have experienced the nightmare that is toxic mold know the overriding, all encompassing, indescribable fear that comes over one at even the idea of going near those toxic elements again. The tiniest amount causes such painful and long lasting reactions when you have become as hypersensitized as we are.

And I know they're just things, but they're the little things that make up a life, that help cement memories, especially when the people who gave them to you are gone. She will never go to that school again, or see those friends again. I will never see my grandma again. And we have nothing to remember them by. Our moldy brains that sometimes feel as holey as Swiss cheese try to hold the memories fast, but it's like sand through a sieve. Some days are better than others.

The Mold! It's Like a Stephen King Nightmare, only...

it's only too real. In my never-ending pursuit of answers on the internet, I stumbled across this, and while it was obviously fantastical and strange, not unlike a Stephen King story, it also felt eerily possible and real after what I've been through.

For those who don't want to click the link (I'm not above internet laziness myself) it's about a family in 1961 whose humble farmhouse was completely taken over and consumed by a rapidly growing, hyperactive, super mold. They lost everything and could not rid their house of the mold, they had to send their daughter to live with friends, while they themselves moved into a bus on their property and eventually moved away with nothing. 

The mold grows overnight, and even after being cleaned repeatedly, keeps growing back, covering the entire house and all it's furnishings overnight. It makes the farmer and his wife extremely ill, hacking and coughing, and according to their daughter may have contributed to an early demise as well. 

Despite the fantastical elements (covering walls and furniture overnight???) it still feels so real to me. If our mold was visible, it would almost be better, because then you could show it to people, and prove it. See? I'm not crazy! But it's invisible, insidious, and pervasive. It covers all your belongings and entire house alright, it's just not visible. If you can't see it, how can you remove it? How can you get away from it? 

Why is it still everywhere? When will we finally be free?

So I'm writing a lot, several blog posts a day sometimes, because right now I seem to be able to find some words and have enough mental clarity to put them together at least semi-coherently. Since the mold exposure I don't always have that capability so I'm taking advantage of it while it lasts. I want everything to be documented while I can, in case I ever get to a point where I can't document it anymore and can't get that ability back.

I know a lot of what happened won't make sense to people. I certainly wouldn't have understood it before experiencing it firsthand. I never had any idea that mold was capable of all this, and I certainly took my time in accepting what was going on. It is incredulous indeed, and I even thought as I started to research it, that these "mold people" were crazy, and that wasn't me. But as we moved and moved again, I began to realize that it wasn't crazy. Something was going on. It wasn't enough to simply get away from the initial exposure. These tiny molecules of toxin were embedded in our belongings and no amount of cleaning seemed to eliminate them entirely. And our sensitivity to increasingly smaller and smaller amounts was increasing, meaning that even as we moved and got rid of stuff and cleaned and cleaned and cleaned again, it was never enough, because our sensitivity was increasingly exponentially all the time.

At least we weren't alone. My research uncovered countless people who suffer, and every story is different. Every physiological reaction is individual and complex, making it so hard for doctors to treat and understand this illness.

Here are some celebs who have experienced the same thing:
Shemane Nugent, wife of Ted Nugent, her entire family lost everything due to mold exposure. Fortunately they're celebrities so it's a little easier for them to get away and replace everything, than it is for me, the average working class person.

Brittany Murphy, who famously died a few years ago due to chronic pneumonia, and mysteriously her husband died only a few months later from the same thing...turns out toxic mold was a factor in their illness and death. It's interesting that they both died of identical causes, "pneumonia and anemia" when they were a male and female with different physiological structures and conditions, yet died of identical causes within months of each other, clearly indicating environmental causes.

Suzanne Somers moved into a leased rental following her house burning down and became ill from toxic mold exposure.

Ed McMahon lost his dog to toxic mold exposure and he and his wife lost their homes and were made ill.

So, we're not alone, but fortunately for the people in these stories they were celebrities with the funds and means to leave the mold behind and replace and rebuild their lives. I don't have the means to completely get away, and I'm starting to fear that just like Brittany Murphy, it may kill me and my children. We have tried everything, at great expense that we can't afford, and still there it enough residual mold in the air and in our home to kill us.

So sad today....

Okay, my words aren't adequate today. I'm having a "mold moment" as we've come to call them. My eyes hurt so bad I can't think, and my children's eyes are red and inflamed and "on fire!" as the youngest explains it. So, I'm sad. We have moved from the original mold house, to a vacation home, to another house that turned out to be moldy as well, to this one. We made the mistake of hanging onto some keepsakes and valuables that we were storing in the garage, and have since moved to a storage unit, but the residual mold is really affecting us. It is unbelievable what a small amount can affect you once you've been sensitized by months of exposure. This is just not fair.

So, I have to link to someone else's words today because mine are inadequate. But this blog explains so clearly and succinctly what it's like, that I have to give props.

Start here for tons of links and information:
http://www.paradigmchange.me/

And check out this one for tons of good info and the closest approximation to what we are going through that I have found:
http://moldrecovery.blogspot.com/

Loss of home and community

Five years ago I moved to Camano Island, Washington, believing that it was to be my forever home, where my children would grow up and later bring their children, my grandchildren to visit, and we would fill the place with memories and pieces of our lives and stories for years to come. Thanks mold, you took that from me too.

Camano Island is a small and close knit community, one of the things we loved about it. It's also one of the things that makes it hard to find housing. There are no new developments being built on Camano Island, both a good and a bad thing for me now. Many rentals are old, and run down, and also it turns out, moldy. Because it's an island, it's inherently humid and moist and damp, perfect conditions for growing mold. If you can afford to buy one of the few and far between houses that are new construction or well-maintained one owner older houses, then you're in luck, you might be avoiding mold. 

But if you made the choice that I did, to stay home and raise your children and therefore limit your income by half, you might not have the economic freedom to choose where you live. If only we had stayed in the first house on the island that we lived in. We lived there for almost three years and we were very happy. It was a beautiful house with maple hardwood floors, limited carpet, electric baseboard heating, clean and safe. If only we had stayed there and not moved. Unfortunately as renters, we had little choice. The owners wanted to sell and couldn't sell if the home was under lease. So we had to move, and so started the worst nightmare of my life. 

For over a month we searched, trying to find another rental on the island that fit our needs. We were running out of time and beginning to feel a bit desperate. I didn't want my daughter to have to switch schools and leave her friends behind, I didn't want to leave this little community that felt like such a safe haven to raise my family in. So when we found a large 4 bedroom home with over an acre of land, in a private quiet setting, we thought we had found our dream home. Every day I relive that moment, when we toured the house and jumped so eagerly at signing a lease, and every day I regret it with every fiber of my being. If there was any point in my life that I could go back in time and change, that is it.

The day we signed the lease and accepted the keys, little did we know we might as well have signed our own death warrant. It would change life as we knew it, and ruin everything; our health, our happiness, our financial security, our hope for the future. I would give anything to have that all back. Lesson learned universe, can I stop being punished for that mistake now? 

It's The Little Things...

that make life sweet. Here is a small, and ongoing, compilation of the little things I've lost due to this dread mold illness. I realize most of them are small and petty, but if most people were honest, it's the little things that make life worth living.

In no particular order, I've lost:

I've lost the ability to go to libraries and enjoy one of my favorite pass times-reading. I am too sensitive to molds and dust now to enjoy rifling through stacks of musty old books. It causes my eyes to burn and become even more inflamed than they regularly are, to the point I almost can't stand it, and then couldn't read anyway. It's not a major things, but it makes me sad. I am a lover of the written word, and it breaks my heart to not be able to enjoy it at my will. A kindle or ebook is just not the same. And who can afford new books when you have to replace everything you've owned or worked for your whole life overnight.

A huge hit to my vanity-no more contacts so I have to put up with glasses which is not just a hit to my vanity, but such an inconvenience I never realized. It is very rainy where I live so every time I go outside I have to remember to keep a cloth with me to wipe my glasses off so I can see since they get spattered with rain. They fog when I open the oven or try to clean dishes in hot soapy water. I can't shave my legs since my vision is so poor and I can't wear glasses in the shower, so I end up a bloody mess. My kids can't jump on me like they used to without knocking my glasses into me or them. It makes it harder to wrestle and tickle and play with them like I used to. Also hard to workout, as if I could do that anyway anymore.

Another hit to my vanity- no more makeup. My eyes are chronically inflamed and I can't use any makeup at all, without increasing the inflammation and pain. As a pale skinned ginger with orangey eyelashes and brows, this is kind of a big deal. I used to love piling on eyeliner and mascara to enhance my eyes and diminishing how much my freckles stood out with a dash of powder. Now I have to face the world with my awful ginger faults all brazenly on display (that's tongue in cheek, y'all). But still, it makes it hard to want to go places when not only do I not feel well, I feel like I look awful too.

I've lost the ability to work out. Now I know some people will say, uh, no big loss, but for me it is. I loved exercising. I have since I was a young teenager discovering dance and aerobics in junior high. I enjoy being active, I love running and lifting weights, and of course, I love the results. I love kickboxing, Taebo, dance aerobics, calisthenics. It literally gives me that endorphin high, as well as giving me so much energy and strength, and makes me feel good about myself. Sometimes I make myself take a walk around the block to get a little exercise, but it's not the same. I really miss that.

Feeling good about myself, as well as feeling good in general, I miss that too.

And yet more hits to my vanity- weight gain. Besides not being able to work out and being depressed and feeling ill in general, something about mold seems to cause weight gain. It's awful. I have never been this heavy and that of course brings me down too.

Hair loss- yes, more petty hits to my vanity, but come on, a women's hair is literally her crowning glory. I loved my hair, it's rare, bright jewel color of red, it's length and shininess, it's curl. And now, I have bald patches, it's thin. God, I'm hideous!

There seems to be an element of this going on as well

I'm still learning about what mold exposures can do. Because the medical community seems to not understand it very well, and it is rather rare, all things considered (although in another post I'll talk about how many celebrities have experienced toxic mold exposure, so it's not that rare), the research and knowledge is limited and ever changing. I learn new things every day, and I am always uncovering contradictory information as well, which makes it hard to understand what's really happening to us. Overall I just know that I want to be well, I miss life as I knew it, and I will try anything to get past this and back to a state of normalcy.

We have moved four times due to this dread exposure, and shed ourselves of well over 99% of our belongings, and we are still experiencing symptoms. So I am trying to figure out if it is due to exposure, or permanent damage, or the need for treatment. Something called Toxicant Induced Loss of Tolerance was suggested to me, and some of it fits. Which frankly scares the hell out of me.

http://discovermagazine.com/2013/nov/13-allergic-life