Tuesday, April 15, 2014

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 (like this one) I've seen online. The most toxic and damaging mold in the world has really wreaked havoc on our lives.

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.

Friday, April 4, 2014

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?

To reflect on later...

Today was a bad day. Lots of symptoms, and considering how far removed from the original exposure we are, this makes me discouraged. Finding this timeline on the internet broke my heart...I relate so much to the pain and suffering, and am so grateful that it could have been so much worse if we hadn't gotten away from the original exposure as soon as we did. I am indeed thankful for the good things. It all could have been so much worse. Feeling thankful!

Thursday, April 3, 2014

We Have Lost Everything...

And we're not alone. There are many others out there like us, and many more still struggling along without answers and without realizing.


Which I believe is the same as this family. So much of their story is similar to ours:

I'll keep adding more links and information as I find it. Today is a particularly bad day health wise: my eyes are on fire and I have sharp shooting pains behind them and whenever I move them, look to the side, or blink. My legs are shaky and tingly and numb, the muscles feel worn out as if I'd run a marathon yesterday, yet I've done no exercise recently. I'm starting to have the brain fog that makes it hard to write, hence how I'm starting to rely on links and other people's words to say what's going on.

All of the toxic mold posts on this blog say it as good or better than I could, feel free to peruse and learn what a toxic mold nightmare feels like.

Looks like the fourth move is not going to be the charm. It's because of how much stuff my husband brought to the garage from the original moldy house. I wish we wouldn't have made that mistake in the line of so many others.

Tuesday, April 1, 2014

It's just not fair...

So much of this rings true....


The night fevers, my older daughter had those. She would become burning hot at night with high fevers, over 104 degrees, only to seem fine by the time the morning came. Of course doctors thought we were crazy, until they measured the fevers themselves that then subsequently disappeared.

And doctors not understanding, thinking it's all in your head because it doesn't make sense. My own husband kept saying, maybe you need "help," meaning maybe you need to see a fucking shrink. You're crazy!

Rashes, confusion, tiredness, oh so very tired, all the time. Eyes burning and in pain, feeling like they're going to explode, or implode, so much pain. Too hard to concentrate with that amount of eye pain.

Why, why us? When everyone else can move on with their lives and live happily and in peace and comfort, why do we have to suffer and have it never end?

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:

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