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...

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/

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

Lost Health

So few people, doctors included understand the very dangerous toxin that toxic molds are. Here are some of the health effects that we experienced, followed by some links to sites that document these concerns.

Our primary troubles have been with our eyes. This is the damage that seems to be permanent and hasn't gone away even though we removed ourselves from the original moldy environment and have since shed ourselves of most of our personal belongings. I still hold out hope that if I can find the right treatment or remove ourselves with a complete break from all belongings (as in literally just the clothes on our back which would then be shed in a hotel room somewhere after buying new clothes) and then start over completely from scratch, that our eyes will heal to pre-mold levels. But I also fear that that may not be possible anymore. I just don't know.

Eye troubles: constant redness and inflammation, burning sensation like soap in the eyes, pain behind the eye ball like pricks and pins, sharp pain with movement of the eye in the muscles behind the lids, near constant eye pain and burning, blurry vision.

Skin rashes, itchy and painful.

Dizziness

Brain fog, and confusion. Trouble with finding words and remembering things. Not just me, my younger daughter started calling leopards, her favorite animal, leprechauns. And asking what presents she might get for Thanksgiving this year. My older daughter started having trouble with math and difficulty recalling facts when she used to be a highly advanced student reading at an 11th grade level in the 2nd grade. I used to write for a living, but began having so much trouble composing coherent sentences and recalling even the simplest words, that it obviously made writing for pay impossible.

Headaches

Balance issues

General feelings of malaise and discomfort. This was exhibited as well by my older daughter who would frequently groan and whimper and when asked what was wrong, be unable to articulate exactly what was going on.

Inability to draw a full breath, a feeling of heaviness in the lungs and chest. Shortness of breath.

Constant diarrhea, independent of dietary changes and without any discernible medical cause. Experienced only by my husband and younger daughter.

Lack of ability to concentrate.

Depression, which also could easily be caused by the extreme difficulty of our situation: loss of health, loss of finances, lack of finances to fix the situation, family and friends who don't believe you or understand what's going on, loss of community forced by moving, loss of school and friends from moving, the list of things that can cause depression go on and on. But it is also medically documented that mold can cause neurological symptoms including depression which can compound the feelings of hopelessness caused by the situation.

Anxiety, see above.

Insomnia, again see above. Could be medically caused, could just be how shitty awful our situation was.

Hearing loss. I had a cold that was so bad, it plugged up my right ear to the point I couldn't hear at all. 3 rounds of antibiotics failed to clear up hearing in that ear, much to the confusion of my doctor and ENT who couldn't understand why the antibiotics weren't helping. I'm no medical professional, but hmmm, maybe because you're targeting a fungus with a drug designed only to kill bacteria. Call me crazy.

Loss of tolerance to chemicals. I thought I was losing my mind because after moving from the original moldy house and most of our symptoms went away, my eyes still burned not only when sorting through our moldy possessions, but when pumping gas, cleaning with bleach, or walking by the laundry aisle at Walmart. Turns out mold-induced loss of tolerance is a real thing.

Reduced immunity. Even after we left the moldy house and stopped getting the really bad recurring colds and sinus infections and ear aches, we still kept getting colds with alarming frequency. I believe due to our immune systems being depressed due to the mold.

Nausea.

Blotchy, dry skin, in addition to the rashes.

Feeling of pressure in the head, not due to a headache, just a weird swimmy, pressure feeling. Hard to describe, but it comes when I have to sort through our moldy possessions and goes away about a day after being away from them.

Burning feeling in the nose, stuffiness, nose running.

Sore throat.

Hair loss.

Irritability.

Sunken eyes, dark circles under the eyes.

Sores that take a long time to heal.

Behavior changes, particularly in my children who went from being sweet little girls who were mostly kind and had only the occasional spat of sibling rivalry, to literal little monsters who fought constantly over the littlest thing, threw tantrums, and were just generally ill behaved and emotional.

All of these were experienced directly by my family, who prior to living in that moldy house had zero health problems of any kind. I had a perfectly healthy family, who is now riddled with sensitivities and problems.

Now many people, doctors included, believe that the only symptoms due to mold are allergy symptoms. After trial and error, numerous allergy tests on all of us, and much research, I know that this is not the case. Not a single one of us has any allergic reaction to any of the over 200 species of mold that they test for. We have all been tested and not a single test has come up positive. All of our reactions are toxic, not allergic reactions. Allergic reactions in general are more of an annoyance than life crippling and altering. And they can be relieved with allergy medications and steroids, both of which did nothing to help us.

I wish they did. We would have experienced some level of relief by now.


Links:
http://blackmold.awardspace.com/black-mold-toxic-stachybotrys-mycotoxins.html

http://www.stachy.5u.com/posts.html

http://moldgeek.com/black-mold-symptoms/

These are just some of the most comprehensive links. To the side are some of the same and compilations of more. Mold allergy symptoms are not the same.

You Never Know What You Have Til It's Gone

You know how people say "At least you have your health." And if you have your health, you think it's a stupid phrase because if someone is saying that to you it's because you're experiencing some kind of minor life event that is bumming you out. Short on money? At least you have your health. Boyfriend broke up with you? At least you have your health. Car got broken into? At least you have your health. Lost your job? At least you have your health. You get the picture.

But before you dismiss that phrase as stupid, think about how much you take your health for granted. Being able to wake up every day and worry about mundane, daily worries like being out of coffee creamer, or even making ends meet at the end of the month. To not have pain and illness overshadow every other feeling or thought or issue going on in your life. When you're healthy, you never even realize how good it is. 

I used to be healthy, and worked hard to keep it that way, although as a female I wasn't working so much to be healthy as to be thin and pretty, as all women know. You work out to be thin and have a nice figure, it's just a nice side benefit that it keeps your blood pressure down, your energy levels up, your cholesterol and blood sugar stable. You lift weights so that your figure will be toned and not jiggly, it's just a nice side benefit that it prevents osteoporosis and improves your posture and ability to handle everyday tasks like lifting kids, picking up the house, and hauling groceries. You eat healthy to complement your workout program and drink water to have nice skin, it's just another nice side benefit that it keeps you healthy. 

I always took it for granted that I had the energy to work out, the energy to keep up with my kids, the strength to do all those things. I loved that I was healthy, but I totally took it for granted. After a few months of living in our moldy house, I suddenly had trouble working out because I couldn't get a full breath. I was winded and tired easily. I had constant recurring sinus infections and colds that knocked me out. The worst colds of my life that kept me out of commission for weeks at a time and never seemed to fully get better. It took more than months to realize it was due to mold.

 Like most people, I thought that I just kept picking up a bug that was going around. Especially since at intervals my children and husband were both sick too. Going to the doctor yielded diagnoses of sinus infections, severe colds, a couple of rounds of antibiotics, nothing out of the ordinary. Then an eye infection (or so I thought) started that wouldn't go away and soon spread to the other eye. My eyes burned as if I'd just dropped soap or shampoo in them and were red and inflamed all the time. The eye doctor prescribed antibiotic eye drops and after three rounds of increasingly stronger drops not working, she tried steroid drops. Nothing helped and my eyes continued to get worse. 

The colds and sinus infections abated temporarily, perhaps because by then it was summer and we were outside a lot more, but the eye "infection" did not let up. I started to see a different eye doctor who said that the problem wasn't bacterial or viral in nature and was not an infection at all, but some sort of irritant reaction. I had already stopped wearing contacts, so now I stopped using makeup entirely. A different type of steroid eye drops was prescribed, but still did not help. Then one night as I was helping my children get ready for bed, I saw that their eyes were red and inflamed as well. 

I immediately took them in to see the eye doctor the next day, but she was sure that it was not bacterial or contagious. Now I knew it wasn't simply due to contacts or makeup, but what could it be? How could all three of us have severe conjunctivitis without it being bacterial or viral and contagious in nature? That was where I started to wonder if something environmental was going on in the house and my online research led to mold. 

Once I found the missing puzzle piece of mold in the house, everything else fell into place. It all made sense. We had been perfectly healthy with never more than one or two minor colds per winter before moving into that house. Now, we had been almost constantly ill since moving in and our eyes had only started to have problems since living in that house too. I finally had an answer, so I thought that would lead to a solution. Little did I know, it was just the beginning of a nightmare that would never end.