For my Neighbors affected by Hurricane Sandy…My Story of living with Mold

Last weekend’s New York Times article about Hurricane Sandy and mold is prompting me to tell my story. This is a “coming out” of sorts…yikes… but I know my experience may help others. So if you wondered how an ivy league grad, ex-lawyer, from a very in-the-box mainstream world morphed into a health and wellness advocate? I would say mold. There began my journey.

There is so much confusion about mold. Articles like the one in the New York Times do not help. They say everyone knows mold is bad, but not how bad. Many understand mold causes respiratory illnesses or allergic reactions, but no scientific findings conclude it is toxic. BUT IT IS! Live in a toxic, moldy environment for a period of time and you will know. No need to rely on studies, doctors or scientists.

My family and I suffered from exposure to toxic mold for over two years. It was not until a friend (not a doctor) read an article about mold, did I know to test our home. When I did, we discovered highly elevated levels of Stachybotrys and Aspergillus, two forms of toxic mold. I called my doctor at the time. “What do I do?” His response, “I have no idea.”

This is after seeing 38 doctors and receiving multiple diagnoses and prescriptions. Some of these included: antibiotics for possible lyme disease, sinus and ear infections, vestibular therapy for dizziness after I walked into a glass wall, various tubes of cortisone for insatiably itchy legs and rashes on my body, fibromyalgia, and many scripts for anti-depressants never to be filled. In fact, I did not have lyme disease or sinus and ear infections. I did not need two months of vestibular therapy nor did I have fibromyalgia. I was not depressed. I was scared.

From my experience, when you fall into the gray area of medicine, the best you will get from a doctor is merely a referral to another doctor. And after seeing 38 specialists, what choice did I have? Settle for a lifetime of debilitating symptoms? Or take matters into my own hands? I did not need a band-aid. I needed decisive action. I needed to heal.

Mold is serious stuff and much more prevalent than people realize. Some mold can be harmless like green bathroom mold. Black mold is a whole different ballgame and needs to be dealt with immediately or preferably dealt with before it turns black. It is stealthy, often hiding in furniture, behind drywall in the paper liners, in ceiling tiles, carpeting, fiberboard…usually porous materials.

The symptoms are vast and because no study has confirmed these effects, doctors are unfortunately, clueless. Yes, I am entitled to say that after being bounced around for two years.

MY STORY

Eleven years ago we moved into a new, completely renovated apartment. Within months, I noticed that some windows leaked in my bedroom. They are floor to ceiling and the carpet next to the windows was turning black and crusty in the corners. Not wanting to deal, I just covered the patchy area with the curtains and ignored the problem.

Life goes on and then a pipe burst, flooding the kitchen. We opened the ceiling briefly, repaired it and went on with our lives until I started getting headaches. I never had headaches in my life and these were severe. Then, HORRIBLE mood swings–serious, irrational rage. My poor husband and children… the smallest things set me off. Then, insomnia hit which of course, exacerbated the rage. I literally could not get into that deep REM sleep and woke up every morning feeling like I had been hit by a Mack truck.

I experienced neurological symptoms– brain fog, like being stoned 24 hours a day; just without the fun.

I spent my days utterly confused. I could not tell you what I did the day before. I could not remember people’s names. What I was experiencing was very similar to what people describe as “chemo brain.” Scary stuff, like when I stood in an intersection of oncoming traffic because my compromised brain registered the red light as green!

My vision was blurry. My depth and sensory perceptions were off. Once, I sideswiped a car unable to gauge distance and I always felt as if my husband was going to crash into the car in front of us. My fine motor was limited–my handwriting reduced to a scribble. I could not get my hand to do what my brain intended.

I had chronic yeast infections, chronic exhaustion, numbness in my face, swollen calves, and oh yes, FEAR. I felt like crap and forced to function for the sake of my young family with no end in sight, fear just consumed me. The ongoing government terror alerts did not help. I was chicken little and the sky was definitely falling!

As for my family, one son had strep throat 11 times in one year. He also suffered unusual anxiety attacks. How many 7 year olds freak out at Disney World and beg their parents to take them back to the hotel room? To him, the crowds of people were suffocating. Another son was low tone and developed a significant speech impediment. And my youngest, only 1 at the time of initial exposure, no doubt suffered cognitive delays. He happens to be the happiest, most easy going kid, but with ADD. As for my husband, let’s just say he lost 20 lbs; 20 lbs he did not need to lose.

I may not have been part of an official, scientific study, but who needs studies to validate one’s reality. For those who do, there are many articles describing my symptoms. You just need to know to look for them as so many of the symptoms can be confused with other illnesses. Exercise caution relying on information that only discusses respiratory symptoms like the New York State Department of Health. They only list:

  • Nasal and sinus congestion
  • Eye irritation, such as itchy, red, watery eyes
  • Respiratory problems, such as wheezing and difficulty breathing
  • Cough
  • Throat irritation
  • Skin irritation, such as a rash
  • Headache

Those affected by Hurricane Sandy need to be aware. Obviously, official statements do not provide the complete picture. According to the NYT, studies “stop short of saying that mold sickens the healthy,” which we know from my experience are not true! I was perfectly healthy prior to exposure.

Acting quickly is important. I did not and look what happened. I literally incubated in a petri dish of mold for two years and not one doctor thought to ask about mold or any other environmental contaminant.

It has only been 5 months since Sandy and I am hopeful symptoms are not yet severe. Respiratory symptoms tend to be from limited exposure. More debilitating symptoms, like mine, are when exposed for extended periods of time. Also, mold affects everyone differently. While my family suffered, it seemed to hit me the hardest. Perhaps it was because I was at home the most.

Mold is also tricky as the symptoms can easily be dismissed as extreme stress— the kind of stress one experiences when dealing with a flooded or destroyed home. However, be watchful. At the time, I was EXTREMELY stressed, but I did not have a trigger for my stress. I knew to keep searching for a cause. If you can, remove yourself and gauge whether the stressful feelings dissipate. It slowly dawned on me that my symptoms seemed better away from our home for lengths of time.

My experience no doubt influences my perspective on health and wellness. Until the mold, my attitude was “what I don’t know won’t hurt me,” until it did.

Like all of us, I was raised to trust doctors, medicine, and science. Since my illness, I have learned to question. I question why we believe things to be true just because a scientist or doctor says it is true? Science is only good until proven otherwise. Why do we tend to be passive participants in our quest for health, delegating so much authority to our doctors? Why have we lost our intuitive sense of knowing what is best for us regardless of consensus? Why are we often quick to medicate or settle for a lifetime of medicine, when healing with dedication and determination is possible?

I have also learned that our health IS DIRECTLY affected by our environment and diet; an important tenant of holistic, eastern philosophies, but evidently undervalued in western medicine. If the environment/diet connection was better understood: one of my 38 doctors would have questioned my environment. Hospitals would provide MUCH better, healthier food to patients and just maybe the FDA would do a better job policing our food and the many additives.

But maybe the tide is changing on the patient level. I do believe self-awareness and self-advocacy is on the rise. More and more people are actively taking charge of their health, the key to healing.

I began my healing process eight years ago, but today, how many claim to be gluten intolerant—a self diagnosis rather than a medically documented condition? Many people are dairy free, by choice. Many people only eat organic foods, or are vegetarians, etc. Many choose to only use “green” products and industry has responded. Just take a trip to upscale markets like Fairway or Whole Foods and see aisles dedicated to these specialty foods/products.

I do not believe doctors or documented studies are driving this trend. It is simply a growing desire to feel better and do whatever it takes–to heal rather than survive. Simply, if you eliminate and feel better, then you know. Like my friend who eliminated gluten and dairy. He feels amazing and lost 10 pounds!

It seems western medicine’s rush to medicate and rely on pharmaceuticals is based on the wrong interpretation of the word “disease.” Odd considering if you stopped for a moment and examined the word. Have you ever noticed it can also be read– “dis-ease?” What we seem to be learning as a society and teaching our doctors is that as you eliminate toxins, chemicals, additives, processed foods, environmental contaminants, etc. “dis-ease” subsides. As you take charge of your life, dig deep within, make changes, you heal. I am not against medicine and surgery when needed, but would they be as necessary if we took these simple steps to be healthy?

I admit. I was a basket case back in my “mold days.” Unfortunately, many of my doctors agreed. No surprise, they all dismissed me with a prescription for psycho-pharmacological drugs and the name of another doctor who might help. However, I was not crazy (although my husband and kids may still lovingly debate this). With or without a true diagnosis, I was sick.

My last and final doctor understood, despite not knowing how to treat me or believing I would get better. He offered sympathy, but in the end, healing was my responsibility, not his. Perhaps I was ahead of my time, but as I eliminated the mold, chemicals, foods, and negative, fearful thoughts, I got better. It took time and incredible determination, but I did it.

MY STEPS TO WELLNESS

1. Remediation

It took two different teams, but we finally cleansed the apartment of mold. Be very selective and ask for multiple references. Our first team was a sham and took us (or our insurance) for a ton of money. They falsified the air tests. I later learned, you will never have a “zero” on a test. Every home will have some level of environmental contaminants. As I was still sick after the clean up, I called the insurance company for a referral and they put me in touch with Bill Southern of Microecologies. He saved us. I am eternally grateful. On a hunch, he ripped up the floor in my kids’ area and found a paper liner soaked with mold. Once all mold is removed, symptoms will gradually dissipate. This helped tremendously, but some symptoms lingered. Even to this day, I can still walk in to any home and sense mold. My head immediately reacts and gets foggy and my breathing changes.

Check with your insurance to see if they cover mold. Ours did! Thank goodness!

If hiring an expert is not an option, The NY State Department of Health recommends:

  • The first step to mold cleanup is to control the moisture problem. The source of the water must be identified and corrected.
  • Porous materials with extensive mold growth should be discarded (e.g., drywall, carpeting, paper, and ceiling tiles).
  • All wet materials must be thoroughly dried. If that is not possible, they should be discarded.
  • Mold growing on hard surfaces (e.g. wood and concrete) can be cleaned. Small areas can be scrubbed with a cleaning rag wet with diluted detergent. Rubber gloves and a dust mask are recommended for jobs other than routine cleaning. For a large mold problem or if you are highly sensitive to mold, an experienced professional should do the work.
  • In areas where it is impractical to eliminate the moisture source, a 10% bleach solution can be used to keep mold growth under control. In areas that can be kept dry, bleach is not necessary, as mold cannot grow in the absence of moisture. When using bleach, ensure that enough fresh air is available because bleach may cause eye, nose, or throat irritation.
  • Continue to monitor the area for new mold growth and signs of moisture. This may indicate the need for further repairs or material removal.

2. “Green” Living

For those exposed to mold, another symptom is a heightened sensitivity to chemicals and smells. At this time in my life, I switched to non-toxic cleaners, detergents, natural soaps, organic shampoos, lotions, nail polish, organic foods, eliminated sodas, etc.

My litmus test for chemical insensitivity: airport bathrooms and air fresheners in cars. Both airport bathrooms and air freshners reek of pungent cleaning chemicals. If they make you want to gag, you may want to consider changing to the many “green” cleaning supplies on the market. So many of us associate that smell with clean, but the smell is hardly “clean.” It is highly toxic. Regardless of chemical sensitivities or exposure to mold, your home and air will be infinitely healthier minus harsh cleansers. My friends never comment that my house seems dirty since eliminating these products.

3. Alternative Medicine

I read once that Dr. Oz will never operate on a heart patient unless he also sees a therapist.

More and more people are appreciating the power of eastern philosophies and treatments, particularly when desperate for a cure. Eastern medicine emphasizes a mind/body/spirit connection. Sickness or ailments are viewed as physical manifestations of underlying emotions. As you release the emotions, the body heals. Western medicine’s singular focus on the body and not the mind and spirit may temporarily alleviate the symptoms, but if the emotions are still there, the illness will return. From my experience, this is so true!

As I exhausted western medicine, where else was there to turn? I started with acupuncture which led to something called Bodytalk– it is tapping the body, signaling the body to do what it knows how to do naturally…heal itself. Then I met an actual “healer,” who in one session, energetically lifted what felt like a 100lb weight off of my chest. That day was March 29, 2006. It was a gorgeous sunny day. I remember running home and for the first time in ages having the energy to take my kids to the park. She said, this was the first day of my new life. How prophetic! She was right. I still see her regularly.

There were many others along the path– pretty much anyone and everyone who offered help. I was like a “healing human guinea pig.” Yes, I desperately wanted to be healthy and happy, but something else emerged along the way– an insatiable curiosity. A whole new world opened– one that promised and delivered health, peace, calm, and joy.

4. A Mold Free Diet

Most have never heard of Candida, but an overgrowth of Candida or yeast is serious. Yeast, like mold, is a fungus. Thanks to my deluxe “mold accommodations” for two years, mold growth became an internal and external problem. The only choice I had was a strict yeast-free diet.

I went to an environmental immunologist/allergist and with his guidance I eliminated: gluten, corn, sugar, vinegar, mushrooms, alcohol, and all synthetic drugs or additives. Those who take many pills, particularly antibiotics, are highly susceptible to fungal overgrowth.

The diet was DIFFICULT. I asked the doctor how long it would take. He said a year, but most likely for life as I would never want to go back to my old way of eating. Amazingly, he was right. Once I cleaned out my body, I felt fabulous, a feeling that I was not going to risk losing. When I do cheat (I am far from perfect and love chocolate chip cookies), I instantly get headaches from sugar and moody from gluten. As for alcohol, I go from a quick buzz to sleep. It was hard to give up alcohol as a crutch at a party, but after a few months I got used to it.

5. Environmental Toxicologists

I did not know about this field when I was sick. Nor did any of my 38 doctors think to refer me to a toxicologist. However, today, our society better understands the effect of our environment on health and this is a quickly growing field.


I am so grateful to my friend who read the article on mold and recognized the symptoms. Who knows where I would be today? Probably on a cocktail of drugs to relieve my crazies, aches and pains. Who knows what might have happened to my children? My marriage?

For a period of time, mold destroyed my life and yet, it was the best thing that ever happened to me. Unfortunately sometimes it takes hitting rock bottom to appreciate life– to learn, to grow, to be open to wondrous alternatives and to get to know oneself.

My intention is that my journey lights the path for others, particularly my neighbors out in Far Rockaways, Brooklyn, Staten Island, the Jersey Shore and anyone else affected by Hurricane Sandy. And thank goodness my story has a happy ending-:)

Please share this post with anyone who may be facing a similar situation. I am happy to help in any way I can.

2 Responses to “For my Neighbors affected by Hurricane Sandy…My Story of living with Mold”

  1. Tricia Sheehan

    OMG what an ordeal. Thank you for the information. As we finally begin to repair our storm damaged home, this is EXACTLY the information I needed to deal with insurance company and recaltriant spouse on the mold issue. Not moving back in until this is dealt with properly.

    Reply
  2. nycmoldtest.com

    Drywall is created out of two sheets of thick paper and plaster that is compressed between them.We thus may establish
    fungi as taxonomic kingdom of lower plants. Annd should you not destroy
    it all, then it’ll quickly regrow.

    Reply

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