Our Race for the Cure

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I ran a marathon once. I was 21 years old. I remember passing the 13-mile mark, thinking, “Halfway! All I need to do is another 13 miles. I can do it!” And I did. It took all of 3 hours and 38 minutes.

I’m running a bigger race now. It’s longer and much harder. The hardest part? I don’t know if I’m halfway. I don’t know what the finish line looks like. Is there a finish line?

I hear messages that tell me, “Of course there is a finish line!” “Your bodies can heal.” “All you need to do is _____.” “Just try _______.” “You need to have more faith.” “Have you tried _______?” Rather than words of love and encouragement, my beleaguered brain hears two words: “Try harder.”

On the other side, I hear messages that tell me to stop being so obsessed, insisting that our health issues are “not that bad.” I don’t hear relief with these words; my downcast spirit hears, “You’re crazy.”

Our race for the cure has been more traumatic than our flight from our toxic home.

It has been far lonelier, more confusing, more anxiety-producing than all of the emergency room visits and surgeries combined. Why? When I was depending on the medical community, all I had to do was get my sick children to a designated office or hospital. If I followed directions, surely a doctor would provide the magic pill and rescue us. When that fantasy died, I was left alone.

My burden as a mother increased exponentially, because suddenly I had to take responsibility for our health.

That’s when the confusion escalated. We turned to alternative health. The depth of our illness disturbed those who treated us, leaving me with the same horrifying feeling that has haunted me daily for the last 4 years. “This is your fault. The body is meant to heal.” No one said this, of course, but I felt it. (One practitioner did put words to it, suggesting that my 8-year-old son had diabetes due to “narcissism.”)

Our race continued.

“I must figure this out. It’s up to me. I must find the cure. I must!” The messages continued to intensify. I couldn’t ask my husband to carry it. He was busy trying to climb out of our deep financial hole while providing for our race.

The alternative treatments helped. Our bodies responded. We saw progress. But the race seemed unending. It became clear after 18 months that our recovery would be much longer than I anticipated.

We turned to diet as our treatment. The race only intensified.

The anxiety and confusion in the world of healing diets is staggering. “You should juice. You shouldn’t juice. Meats are good. Meats are bad. Ferments are good. Ferments are bad. You can’t. You can. You should. You shouldn’t.”

What’s a mother to do?

Try harder? Give up?

Ironically, the dietary changes have helped the most. But what about the cure? My son still has type 1 diabetes. Have I failed? Have I done everything possible for him? The questions are unending.

After a reflective few months, I have come to the realization that it’s time to stop our race for the cure.

Does that mean I’m giving up? Absolutely not. I love my kitchen “laboratory.” I’m always ready to try something new. But I’m relinquishing. I’m letting go. I’m choosing to embrace our life rather than fix it.

I’m choosing to enjoy my children just the way they are. Broken or fixed, I love them. Same with my husband and our life together. In sickness and in health. For richer, for poorer. Till death do us part.

I take heart in the words of Pierre Teilhard de Chardin:

Above all, trust in the slow work of God. We are quite naturally impatient in everything to reach the end without delay. We should like to skip the intermediate states. We are impatient of being on the way to something unknown, something new. And yet it is the law of all progress that it is made by passing through some stages of instability and that it may take a very long time.

Determination . . . perseverance . . . patience. I don’t need a cure to practice these. I don’t have to race, either. I just need to keep going. One unhurried step at a time.
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Homemade Oven Cleaner

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We've lived in our current rental home for nearly three years. It has taken nearly that amount of time to clean the oven. I turned on the self-cleaning mechanism once, but immediately felt the toxicity of the fumes. Self-cleaning ovens use high heat (900-1,000 degrees Fahrenheit) to burn off dirt, spills, and residue, turning them to ash. The burning process emits dangerous vapors. According to the California EPA's study of residential cooking activities:

The self-cleaning cycle of the gas stove produced the highest pollutant levels by far -- the maximum level of PM10 was over 3,600 micrograms per cubic meter over several hours.

Because our June momsAWARE Natural Year Challenge will focus on cleaning the kitchen naturally, I knew I had to take the plunge. Here is what our oven looked like after three years of spills:


I followed this recipe offered by Karyn Siegel-Maier in her book The Naturally Clean Home:
  • 1/2 c. sea salt
  • 1/4 c. washing soda
  • 2 c. baking soda
Combine in container. Add enough water to make a paste (approximately 1/4 cup). Remove oven racks and preheat oven to 250 degrees for 15 minutes, then turn off the oven and leave the door open. Spread the paste on oven walls with a sponge or cloth and allow to set for 30 minutes. Combine 3/4 cup white vinegar and 20 drops essential oil of choice (lemon and thyme work well together). Spray the oven walls and wipe clean. Rinse well.

I followed these instructions, and two hours later my oven looked like this:


No harmful vapors . . . just a clean oven ready for our next meal!
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New Year's Goal: Shopping List

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As I continue making my way through my 12 New Year's Goals, I have just completed #11: Make a printable shopping list which includes all the items I order from the food co-op, online, Whole Foods, etc. In light of our specific dietary needs, I'm surprised by the variety and extent of our list!




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Kristen's Reflections

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Kristen was 14 years old when we vacated our Colorado home. A freshman in high school, she was struggling with her grades and her ability to concentrate. She was increasingly depressed. I still thought of her as one of the "healthier" ones in our family. She didn't have organ failure, didn't lose her ability to walk, and wasn't dizzy like some of our other kids. She was, however, impacted just like the rest of us. She had been on high doses of seizure medication since moving into the home. She struggled with fatigue and mood. Teachers often commented on her "messy" handwriting. She had a hard time putting words to her feelings. She became less and less verbal. She experienced joint pain in her knees and had symptoms associated with peripheral neuropathy.

Because of our move and the resulting fight to recover, Kristen let go of high school. She received a year of at-home tutoring and completed her GED in the spring of 2011. At the age of 17 she enrolled in the local community college.

Kristen has completed 12 hours in her first two semesters. While her root canal removal last summer gave her immune system a nice boost, she still struggles with fatigue and the ongoing issue of putting words to her thoughts. (See her Story of Tooth #8 in this previous post.) Still, Kristen is progressing, blazing a trail that inspires those who watch.

Last week she turned in a paper for her writing class. Her first paragraph offers this perspective on the move and her illness:

In October 2008 my family of 11 and I left our home and all of our belongings because of mold. The stachybotrys growing in my home was affecting our bodies so intensely and quickly that we had no other choice but to vacate. We moved to a drier air climate and began our road back to health. During this three-year process I've discovered that my brain has been severely impacted. Negative thoughts flow through my brain in large waves and although I try to think more positively it is sometimes impossible. Because of a seizure disorder and the drugs I was put on to "fix" it I have lost a significant amount of overall feeling. Like one of my seizures I have walked around in a fog, not feeling anything, for most of my life. Over the course of the last three years I've come to realize my problem and am striving to make it healthier. This semester and the books I've read as well as the movies I've watched have reinforced the idea that the way I see the world starts in me.
Kristen turned 18 on Monday. It was a quiet, unobtrusive celebration, just like Kristen. A reminder that courage comes in all forms—sometimes with a loud roar, sometimes with a whisper that simply says, "I won't give up."

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Toxic Talk Tuesday Today!

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Join my husband Chris and me today on Chris Fabry Live! for our Toxic Talk Tuesday: Pests and Lawn Care Edition! How can you have a nice safe lawn? How do you get rid of the not-so-pleasant bugs without endangering your pets, your kids, and yourself? Join us for an enlightening conversation and a few challenging quiz questions to test your pesticide/herbicide awareness! We're live on Moody Radio at 2:00 p.m. Central time, or visit the Chris Fabry Live! website to listen via audio stream or podcast.
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K's Tragedy

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She was two months shy of her 42nd birthday. A single mother with three children, living on the East Coast.

I first "met" K on July 8 of 2011. She commented on a blog entry, then emailed me directly.

Wow, thank you so much—you are an inspiration!!! I could not tell if my comments were going through. My brain fog. I have read your timeline on your website about all that happened to you and the kids in Colorado and I am devastated for you and the kids. Thank God you have your husband to help you in this battle, because I am alone. I just don't know what to do and I want to leave the house ASAP because of my kids and their health. To think I am putting them at a cancer risk or other risk is terrifying.
K went on to describe her symptoms. All common with mold exposure.

In retrospect my health has been failing for years and now I have weird thoughts and psychosis/depression/wanting to commit suicide episode a few months ago. My psychiatrist who has treated me unsuccessfully for over a year said it was inflammation and sent me for Lyme testing. I found a great inflammation specialist but of course he does not take insurance. I tested super high for mold allergies. My kids and I are not having as serious reactions as your family but I am terrified. I have the swollen joints, weird thoughts, fatigue, neurological issues with tingling in the hands and feet, profuse panic and anxiety, depression, heart palpitations, brain fog, food allergies, frequent urination, inability to organize and make decisions, liver pain, every little thing makes me upset and stressed, and my cortisol levels are sky high.
She also described issues with her three children.

One has reading trouble and nervousness, another has dizzy spells, anxiety, bed wetting and a few seizure-like occurrences (that happened a few years ago). Another child has anger problems and swelling in the joints. If this is mold our exposure must be less in comparison to your exposure. I think we have a genetic predisposition because I have had asthma and weird rashes as a child. My asthma is better at this stage in my life which is perplexing. I look like the picture of health but I know something is not right and the frustration and stress are also making me sick with worry. I know I have the panic issue and it is so good to talk to someone and get some support.

I am 41 and I feel like my life is over. I was hoping to be remarried, have more kids, get my Masters degree and have a full life. Now I am devastated because what I can do now is limited and I have to take care of the kids. Can there be full recovery from this? Is it okay to exercise since that helps to remove toxins? In this world it is so hard to get the kids to stick to an anti-inflammation diet, and organic is so expensive. Can mold be fully remediated? I guess it depends on the mold. We live in a very humid area. I was always active and fun loving and now I'm not sure if I can even hold a job, and I cry so much. I have been out of work for over two years and when I go on interviews I am all over the place because of the brain fog and I do the dumbest and weirdest things. Really inappropriate and I am having trouble with anger. Should I go back on an exercise regimen? Did you move to Arizona because of the arid environment and to get away from mold as much as possible? I guess that is for the best to be out of a moldy environment because even the outdoor mold can be a trigger. The house is a mess because of my anxiety and disorganization. Is it safe to clean? Please pray God reveals if this is a mold issue as soon as possible and that the kids and I can find a safe place to stay for now until this is all figured out. Also my finances are in collapse because I have lost all my financial resources being out of work for so long and having to pay for testing.

This is so sad because my best friend and the Godmother of the kids lives next door and I hate to move away from her. I attached my resume in case you know of anyone to circulate to in Arizona.

I am going to call the insurance company and let them know over the years I had pipes leak in the house and the toilets overflowed a few times.

Thank you and God Bless!!! I will be praying for you too and I apologize for my upset, but I know you know I am overwhelmed having to fight this. I am trying to give it over to God.

Blessings to you and your family.
K and I spoke soon after this email. She was calm and collected. Kind. Smart. She didn't sound desperate, but in retrospect I know she was. She was willing to do anything to help her kids.

She and the kids left the home. I received this update on September 6:

I am struggling to find a mold-safe place to stay for me and the kids until I can get the house sold. My health seems to be deteriorating with all the stress. I was staying at a neighbor's and I started to have a reaction at her house. My tests for my house came back positive for lots of molds but nothing super toxic like what you have experienced. However with my allergic reaction and immune system it is super toxic. I seem to be most sensitive to aspergillus and alternaria, which are outside plant molds all over here in Maryland. I think God wants me to move to the desert and I am finally figuring this out. It is not healthy to live in this environment given my susceptibility, it will just keep running my immune system down since I am so allergic to outdoor environmental molds. Do you know of any network or anyplace I can stay in Arizona with my kids so we can get well and resettled? This is such an urgent situation and I know you understand this. Thank you and God Bless.
I can't recall if K moved back to the home, but I received this email on February 20, 2012:

Hi Andrea,
How are you? It would be good to touch base with you. I am still having these health/mold struggles. Has your phone number changed?
Indeed my phone number had changed. We connected and she asked if we could offer her and her kids a temporary home. Did we know of anyone who could help? Would I be willing to keep her youngest daughter to help her detox? This conversation took place at the end of March. I ached for her.

I did not speak with K again. Last week I received notice that she had taken her life on April 24. Her sister sent an email to all of her contacts.

I don't know all that went into K's decision to end her life. I do know that toxicity and depression/self-destructive thoughts and actions are connected. I've seen this in my own family. I also know that mold/health battles are lonely ones.

We need an awakening in this country to the reality of environmental illness and its link with mental health. I hope and pray K's story moves us toward that end.

Thank you for reading this. And sharing in the deep pain of this tragedy.
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