Saturday, March 29, 2014

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? 

Thursday, March 27, 2014

Such an insidious enemy...

Unseen, invisible, able to destroy and attack at will, it's not fair.

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.

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.


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.


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.


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.


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.


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. 

Tuesday, March 25, 2014

The Beginning...and the End

It was the end of life as we knew it, but we didn't know that yet. A year ago this month, in March of 2013 we moved into what we thought was our dream house but it turned into a total nightmare. The worst possible kind of nightmare that I wouldn't wish on my worst enemy.

They say you never know what you have until it's gone. It is so true. We had it all but didn't realize it, and of course what we had we took for granted. I was healthy, I worked out every day and had a great figure. I had two healthy children with above average intelligence. My daughter had a best friend and regularly won awards and spelling bees at her school for superior academic performance. We had a house full of nice furnishings, nothing fancy, but it was all clean and comfortable and made our house a home.

I had clothes, many of which I'd had since high school; cute skirts, dresses, vintage tees, jeans. My children had toys: a beautiful dollhouse that was taller than they were and filled with Barbie sized furniture, clothes, and accessories. They had four Barbie cars, all bought at garage sales, but clean and in good shape. They had over one hundred Barbies. Most bought at garage sales or Goodwill, other cherished ones bought new for birthdays, Christmas, and special occasions. They had cute clothes, my youngest in particular had more clothes than she could wear because she had all her sister's hand-me-downs plus new clothes from relatives at special occasions and holidays.

I had a collection of books that I had kept from childhood with all my favorites. The Anne of Green Gables series, given to me by my grandmother, the Harry Potter series bought piece by piece and waited in line for as each book came out, Christopher Pike and R.L. Stine novels collected over time, a series of young adult female novels about important periods in history that I couldn't wait to share with my own daughter when she came of age, now out of print.

So many cherished possessions: my board games given to me by my parents at several childhood Christmases, my stuffed cat Fluffy and her kittens, a beloved and cherished gift from my grandmother on my seventh birthday. Yearbooks, baby books, the tooth fairy pillow sewn by my grandmother, baby blankets sewn by my mother-in-law for my babies. So much, all lost and gone due to mold contamination. And still we struggle and our health is poor.