Friday, March 23, 2018

Our Timeline: Part 1my ch

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;

Thursday, September 3, 2015

Some interesting mold illness info...

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.

Tuesday, September 1, 2015

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 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!

Friday, August 8, 2014

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. 

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?