Dear Normals

By Joel Montez de Oca via Flickr Creative Commons

By Joel Montez de Oca via Flickr Creative Commons

Dear Normals,

I used to be one of you.  So I get it, I do.  I wore perfume and l loved it when men wore cologne.  I used hairspray, perfumed lotion, heavily scented deodorant, and my clothes smelled “fresh” from the laundry detergent I used.  My car smelled like artificial cinnamon from the air freshener I hung.  I ate and drank what I wanted – mounds of pasta, fast food, desserts of all kinds, candy, sodas, espresso every day…and I loved it all.

If someone had tried to stop me then with facts about how I was harming myself, I imagine I would have resisted.  It would have been hard to imagine life without junk food and chemicals.  In fact, I didn’t even think of it in those terms.  I had no idea where fragrance came from.  I think I must have imagined somehow that it came from plants and flowers.  And I knew I felt bad if I ate too much junk food, but a little now and then?  Come on now!  What could be so wrong?

But then I became ill, and everything I’d taken for granted about my life was up for reconsideration.  I didn’t like feeling sick, so I started to read.  I found some things out that I think I would rather have not known.   It began to dawn on me that there was a sinister reality which had been until now hidden from me: the world is not as friendly a place as I had assumed, and remaining healthy in it would require me to buck the tide, to be different.

For many years I fought hard against the contraction of my world.  I love to belong.  I love freedom.  So I often pretended that I was fine, that I was not being harmed by my choices or the choices of other people.  I forced my body to get my attention with the worst kind of health crisis before I would listen to it.  By that time, my world had contracted to the size of my bed by no choice of mine, something that may not have happened if I had voluntarily contracted my world a bit by eating healthier, avoiding unmitigated stress, and staying away from toxins.  My insistence on total freedom in a toxic world essentially stripped me of all freedom for a time.

So dear normals, I do get it.  I have not always been the strange, food allergic, chemically sensitive person you see before you now.  I  know what it’s like not to want to give up the things I like.  I know what it’s like to want to look the other way when confronted with evidence about the harm my choices are causing.  I know what it’s like to want to question the validity of that evidence because it just seems too awful to be true.  But I can assure you now that it is true.  My sick body is living proof.

Sincerely,

One Who Knows

The Evidence:

Dr. Martin Pall on MCS

Dr. Anne Steinemann on Fragranced Laundry Products

EWG: What the Chemical Industry Doesn’t Want You to Know

MCS Under Siege, by Dr. Anne McCampbell

Scent of Danger: Are There Toxic Ingredients in Perfumes and Colognes? – Scientific American

Semi-Sweet: Americans Should Cut Sugar by More Than Half, Says AHA – Scientific American

In Defence of Food, Michael Pollan

Also, see Recommended Reading

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I’m in the Fog

Photo by Armando Sotoca

Photo by Armando Sotoca

I’ve struggled all week with an absolute inability to write.  Well, not exactly absolute.  I can always journal.  But for every blog post I’ve written that was well received, I feel a need to up the ante and write something better.  I’ve reached critical mass now and seem to have overloaded my brain circuits, which is not hard to do given the fact that I’m still recovering from benzodiazepine addiction and chemical sensitivity.  So I figured, why not write about it?

I know some of my readers know just what I’m talking about.  So many illnesses result in this terrible, foggy feeling in the head.  This inability to grasp simple things or to express any complex thought our emotion in words.  This lack of inspiration.

It’s a tragic symptom.  What is more terrible than to lose the ability to think clearly?  What makes us us?  Is it not, in part, our thoughts and how we express them?

I used to be smart.  My thoughts were crystal clear and seemed lightning fast.  Now I feel that my mind plods along like an aging donkey.   It’s terribly ironic that I would have begun publishing my writing to a blog just at the time in my life when my mental faculties are at their weakest.  It’s the syndrome that’s eating at my brain that made me want to do it.  It gave me a terrible need to express myself, to find others like me.  I just wish that both the impulse to tell my story and the ability to think clearly enough to do it had coincided.

I know that sometime in the near future, I will get my brain back and this blog will bloom.  But until then, forgive my occasional lapses into profound states of mental stasis.

 

Photo Under Creative Commons License

Use Safer Products

(Continued from Simplicity of Wellness: Love for the Earth and its Creatures , Grow and Cook Your Own Food , and Eat Local)

tub time

As I sit here writing with raised eyebrows, I wonder what I can say about this.  Many of the people who know me well have already gotten an earful about the dangers of toxins.  So much so that I’m sure they would rather not hear any more.  And I get it, I do.  No one, including me, wants to focus on negative, scary things.  Nobody wants to feel overwhelmed.  Nobody wants to find out that their favorite products might not be so good for them.  I’d rather not have to write this, really.  But I just cannot leave it out, it’s too important.

Anytime we start talking about the avoidance of danger, the difficult subject of the nocebo effect comes up.  A nocebo is the opposite of a placebo.  Just as a placebo can cause a person to feel better, a nocebo can cause an adverse reaction.  For example, if you were told that the glass of orange juice you just drank contained arsenic, and it was then explained to you what arsenic does, there’s a good chance you would start to feel sick even if the juice was perfectly safe.  We certainly can think ourselves ill.

So why focus on toxins and pollution if it can have such a negative psychological effect?  I admit that I feel conflicted about that.  I would rather focus on positivity.  But what if the juice in the above illustration really did contain arsenic, but nobody would tell you?  What if the levels of arsenic were low enough not to kill you quickly, but just enough to make you feel vaguely ill?  What if you unknowingly continued drinking the arsenic laced juice for many years, damaging your body little by little, completely unaware of the reasons for your failing health?  Far from being mere nocebos, like the juice, some things really are toxic, and when people avoid them, they feel better.  I’ve seen it time and again.  The other reason is that many commonly used household products pollute the earth, and that right there is reason enough.

So before considering this admittedly difficult subject, it’s well to remember what wellness is all about.  It’s about love for God, self-love, love for others, and love for earth and all its creatures.  It’s about love, not fear.  So while it is necessary to understand some things about toxins so that we can protect ourselves and our families from undue harm, we must keep in mind that anxiety serves no purpose.  But action based on knowledge does.

serenity prayer

 So here’s the skinny: our world is inundated with toxic chemicals. You already know that, right? But something you may not know is this: the chemicals most likely to harm you are not “out there” somewhere. It’s true that industry pollution is a big problem. But for most of us, our biggest and most damaging exposures tend to be much closer to home. They come from places like the Round-Up container in the garage, the box of dryer sheets in the laundry room, and the myriad self-care products lining our bathroom counters and cabinets.

This is difficult for many people to wrap their heads around.  It certainly was for me at one time.  We’d like to believe that the products we use in and around our homes, and especially those we use on our own bodies, are safe, that government agencies have our collective backs.  They wouldn’t allow these things on store shelves if they were dangerous, right?  Wrong.

If you’d like a detailed explanation, it is in this document by the Lowell Center for Sustainable Production:  Presumption of Safety: Limits of Federal Policies on Toxic Substances in Consumer Products

From the document:

Despite the fact that most consumers believe that everyday products are thoroughly tested for dangerous chemicals and determined to be safe by government authorities, the reality is that existing regulatory systems leave significant gaps in their capacity to adequately protect consumers from chemical hazards in these products.

One of the reasons listed in the article for the failure of government agencies to protect us is the fact that many safety standards are actually voluntary, meaning that companies can opt out if they don’t want the bother of adhering to a higher standard.  For example, the fragrance industry is largely self-regulated.  It’s a case of the fox guarding the henhouse. Another reason is that the capacity of certain government agencies is limited due to budget constraints.  Also, current laws do not actually require companies to test most products for safety hazards.  Weak laws and limited governmental capacity ensure that, inevitably, some unsafe products will  end up on store shelves.

You’ve heard the bad news.  Now here’s the good news.  Great news in fact.  There are more companies making safe, non-toxic products now than ever before.  In the past, we may have had to sacrifice quality and performance in the name of health, but not anymore.  Many of these products work, and work well.  Check out EWG’s Skin Deep Database , and Guide to Healthy Cleaning .

Also, an exciting new trend has emerged: DIY everything.  Because so many people are experimenting with making their own cosmetics and cleaning products, the internet is busting at the seams with well-tested recipes.  Non-toxic is now fun!  One of my favorite sources for great recipes is the Wellness Mama website.

The bottom line is this: when it comes to chemicals, we have to watch our own backs. Government and industry is not going to do it for us.  But we are not powerless.  Education and action can make all the difference.

Multiple Chemical Sensitivity – A Mysterious Malady, Awake! 2000

Hidden Chemicals in Perfume and Cologne

Extreme Chemical Sensitivity Makes Sufferers Allergic to Life, Discover Magazine

Infographic by violet79

Photo by familymwr

Video: A Family Learns About The Products They Buy

Seriously "Sensitive" to Pollution

Chemerical is a film about a regular family as they learn about what’s lurking in their products, struggle to come to terms with the new info, and then learn how to make safer changes in their lives.

“Chemerical” explores the life cycle of everyday household cleaners and hygiene products to prove that, thanks to our clean obsession, we are drowning in sea of toxicity.

The film is at once humorous, as we watch the Goode family try to turn a new leaf by creating and living in a toxic free home, and informative, as director Andrew Nisker works with many experts to give audiences the tools and inspiration to live toxic free.

Chemerical

Andrew Nisker weaves visits to the Environmental Health Clinic in Toronto,

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Chemical Madness

My life has been considerably damaged by some really bad decisions.  They all have something in common: they involve the unwitting use and exposure to everyday chemicals.  There were two decisions in particular that were devastatingly bad.  The first one was the decision to use Xanax to mask the symptoms of chemical sensitivity.  The second was the decision to use another benzodiazepine to undo the long-term consequences of taking the Xanax.  Bright, I know.  I’m going to try to tell my story from the point where things began to spin out of control.

In the summer of 2008, I was battling the increasingly severe symptoms of asthma.  At the time, I thought I had a lung infection that would just not go away.  I now realize that I was experiencing the symptoms of environmental illness.  I had become highly sensitized to the chemicals I was coming in contact with on a daily basis.

Not realizing the cause of my increasingly poor health, I bought a laundry detergent that was to change my life.  Yes, I know that sounds melodramatic, but it’s completely accurate.  This detergent is advertised as an “eco-friendly” brand, and as I was somewhat aware of the environmental issues surrounding the products we use, I bought it.  As soon as I opened the bottle I realized that I might have made a mistake.  The fragrance emanating therefrom was overpowering.  But I powered on and washed all my family’s clothes in the smelly stuff.  Soon, our whole house was enveloped in a chemical cloud, and my lungs were beginning to fill will fluid.  By the time I realized that there might be a connection between my symptoms and my detergent, it was too late.  I had developed pneumonia.

I called my Naturopath and asked for some supplements for pneumonia.  The dose of the herb and vitamin combo she recommended was quite large, but I complied thinking it was the only way to kill the infection.  I’m a very small person with a very sensitive system.  The dose of vitamin A and Zinc that apparently cures the average person poisoned me.  I began to feel extremely thirsty all the time.  I could not get enough water, ever.  I began to urinate enormous amounts of liquid every twenty minutes or less.  I got myself in even deeper when I decided to treat the poisoning by trying to sweat it out, speeding up the process of dehydration already begun.  After about three days, I felt like I was going to die, so it was off to the hospital.  There it was found that I had sweated and peed away all of my electrolytes.  I was basically peeing out exactly what I had put in, pure water.  I received IV fluids and was sent home.

That is when the real mayhem began.  I believe now that I had a severe reaction to the sulfites in the IV fluid that I was given in the hospital.  As a result, I began to have the first panic attacks I had ever experienced that were not related to some sort of emotional stress.  I also stopped sleeping.  I panicked and went back to the hospital, where they diagnosed me with anxiety and sent my home with my first benzodiazepine, Ativan.  I had enough for about 5 days.  I was so relieved to finally be able to sleep and to calm down that I decided to go to my doctor and get some more magic pills.  She wanted to give me some Ambien, but I had heard scary things about Ambien, so strangely enough, I asked for Alprazolam (Xanax), the pill that some of my family members use for anxiety and insomnia. I figured that if it worked for them it would surely work for me, not realizing that Ambien (a “non-benzodiazepine” or “z-drug”) and Xanax are both very dangerous drugs.  I was prescribed 1 milligram, much more than the paltry .25 mgs of Ativan I had been prescribed at first.  One milligram; it seemed like such a small dose.  I wouldn’t find out until much later that one mg of Xanax is roughly equivalent to 20 mgs of Valium, one of the original and very much maligned benzodiazepines.

Xanax hits you like a Mack truck.  As soon as it kicked in, I felt very dizzy and could no longer walk.  All I could do was get in the bed and pass out.   The next morning I was very tired and weak, but happy; so happy!  I couldn’t understand why I’d had any reservations at all about taking sleeping pills!  Everything seemed good and calm and mellow.  Nothing was wrong.  The world suddenly seemed like a much safer and nicer place to be.  Unfortunately, this state was not to last very long.

My memory here becomes a bit hazy (benzos are amnesic drugs).  I believe it was between 3 and 5 days later when I had my first real panic attack, not like those wimpy ones I’d taken the pills for in the first place.  This was white-hot terror.  It began with a  hot flash and ended with me rocking back and forth in utter horror, tears running down my face, finally deciding to take my “sleeping pill” at 5:00 PM because my “condition” had returned and I “needed it”.   It follows, of course, that I would need more medication if I was going to have to use the pills for more than just going to sleep.  My doctor prescribed two more milligrams to be taken “as needed”, which had me taking the equivalent of 60 mgs of valium.

As it turned out, the more pills I took, the more I needed.  Eventually I was cutting them in half and spreading my daily dose of 3 milligrams throughout the day to avoid inter-dose withdrawal and the dreaded panic attacks. Three weeks after my original dose of Xanax, I realized that the pills were making me very, very ill.  For the first time in my life, I felt suicidal.  I was terrified.  I stopped taking my pills, expecting a few nights of insomnia and then a gradual return to health.  That is not what happened.  What followed cannot even be imagined by a person who has never experienced it.

My memory of the first few weeks after I stopped taking Xanax is very hazy, like the memory of a really bad nightmare.  For the first couple of nights I stayed at my sister-in-law’s house because I knew things were likely to be difficult, and I did not want to subject my three boys to what I knew I had to go through.  I threw up all night long.  Every morsel of food that I managed to swallow came up within a few minutes of it going down.  My skin felt like I had been dipped in a vat of boiling hot oil, like I was being cooked from the inside out.  My heart rate was usually between 110 and 140 bpm.  I had convulsions, seizures, visual and auditory hallucinations, delusions and severe depersonalization and de-realization (feeling as if I was a different person and that nothing was real).  I went 2 weeks without any sleep at all and became very, very suicidal.  I had to be watched 24/7.  My perception of time and space was distorted.  I was angry.  I had no positive emotions whatsoever for many, many weeks.

Acute withdrawal lasted for about a month.  After that, my symptoms were somewhat less severe, though still miserable.  I was always in enormous amounts of pain.  The pain in my chest was so bad that it felt like I’d broken some ribs.  In fact, I became convinced I had done so somehow, so I insisted on getting X-rays, which showed nothing.  Due to the fact that my immune system had basically collapsed, I did develop genuine bacterial pneumonia, for which I had to take antibiotics, and which caused me to cough so hard that I dislocated my ribs repeatedly.

Sleep returned gradually, first 2 hours, then 4, then 6 and 7.  I had to sleep propped up with many pillows because of chest and shoulder pain, and because my rapid heart rate made me more uncomfortable and anxious when I was flat on my back.  Every night I had to tell myself these words “you’ve slept through worse, you can do it.”  And most nights it helped.

One year after my Xanax cold turkey, I was feeling much better, though not completely back to myself.  I was left with lingering breathing problems and severe muscular tension.  My ability to handle stress was greatly diminished.  But I had survived and I was functioning relatively normally.  I was immensely proud of myself for enduring and healing from such a horrific experience, and I thought I was much wiser for it.  If somebody had told me at that time that 4 years later I would put another benzodiazepine in my mouth, I would not have believed them.

Part 2

The little blue death pill is how I came to think of the Xanax that I had taken.  Who in their right mind would twice take a death pill?  Nobody in their right mind.  But people in their wrong mind might.

2 years after my near-death experience with Xanax, in the fall of 2010, I began work as a letter carrier for the United States Postal Service.  It was very hard work for someone like me, but I was determined.  I pushed and pushed until I had well learned my route and my other duties, ignoring all the signs that the job might be too much for me.  I pushed through a brutal case of bronchitis worsened by ink fumes, numerous sleepless nights, and despite my misgivings about the newspaper ink coating my hands black, pesticide drift blowing into the open windows of my delivery vehicle, and the extreme stress of working for a sociopathic postmaster.

By Summer, I had reached the end of my tether.  Stress induced insomnia had caused me to go to work zombie-tired many times.  One time in particular there were consequences.  I made a mistake which is considered serious by the postal service.  I failed to shake a mailbag to check for any packages that might have escaped my notice, and thus missed an important piece of mail, an express package.  For this, I was to be disciplined.  This was my wake-up call.  It was time to quite and re-group, and fortunately for me, that was an option I had which would not cause my financial ruin.

I am fully convinced now that my time at the Postal Service contributed in large measure to a significant decline in my health.  Although I have always been aware that I am highly sensitive to the smell of newspaper ink, I did not know until recently that it contains Bisphenal-A, or BPA, which is an endocrine disruptor. An endocrine disruptor is a chemical that can mimic our own hormones, and thus cause illness associated with hormonal imbalance.

By the fall of 2010, I was experiencing pronounced symptoms of hormonal imbalance, much more severe than I had ever experienced before.  By winter, I was so concerned about my symptoms that I felt I must take action.  Past experience had taught me that doctors often mean trouble, so I tried to treat myself, with disastrous consequences.  My attempts at treating my symptoms drove me into a state of crisis, at which point I decided to once again risk putting my health in the hands of my Naturopath.  Her treatments drove me still deeper into crisis.  The combination of my already highly sensitized nervous system and the extra stress of almost selling our house sent me into a final tailspin from which I felt I would not be able to recover.

I was not sleeping again.  For months I had existed on between 2 and 5 hours of sleep per night, when what I really required was nine.  After the house selling debacle, I simply stopped sleeping and went into a state of extreme anguish.  I hesitate to call it depression because it was way beyond that.  It was agony, both mental and physical.  I felt I’d been thrown right back into the jaws of the Xanax beast even though I hadn’t touched a pill in 3 years.

I have an idea about why this became so unbelievably severe.  I once read the story of a man who had been through a very difficult benzodiazepine detox.  Years later he decided to undergo intravenous vitamin C therapy, and during the therapy, the very same withdrawal symptoms he had experienced years before during his detox returned upon him.  I surmise that the detoxification process that the vitamin C therapy initiated liberated drug residue stored in his tissues.  This is simply a hypothesis of mine, but if true, it would certainly explain why I felt three years after taking Xanax that I had been thrown back into the deep pit of suffering I thought I had forever escaped.  All of the treatments I had attempted in an effort to fix my hormonal imbalance were initiating a massive detoxification process which was simply too much for me to handle all at once.

I eventually came to the point where I was in so much mental and physical agony from my exhaustion that I was beginning to have those suicidal thoughts again.  This time I’m sure I would not have acted on them.  But what I was feeling was so intolerable that I eventually allowed a family member to take me to the hospital where I was admitted to a locked psychiatric ward.  This is very difficult for me to tell.  As I sit here typing, the tears are welling up for so many reasons:  Pride, shame, trauma.  It is not okay in our culture to lose control.  The psych ward….oh so many negative connotations.  I don’t have to explain.  You already know. “I’m not one of those people,”  I want to say,  “I’m different.  I didn’t really belong in that hospital.  I’m not crazy, I just had insomnia.”  But I’m not going to say those things.  Every person I met in that hospital was a person like me.  They were people overwhelmed, bodies overwhelmed by our toxic world.

The only thing friendly about a  psych ward are the other patients.  The system itself is harsh and unbending, and you don’t get out unless you comply.  I begged to be given anything other than benzodiazepines.  In spite of that, on my first night I was handed a little green and white pill with a name that ended in “pam”.  I knew what that meant.  It was a benzo.  I asked the med nurse if it was, indeed, a benzodiazepine, and she confirmed that, yes, it was.  I told her that I had specifically asked the man who admitted me to relay to my doctor that I would not be taking any benzodiazepines.  Was there anything else?  Anything that would help me sleep without causing a  brutal addiction?  No?  Why not?  I can’t take that pill!

But take it I did.  I was approaching sleep psychosis.  I needed to sleep.  I had a deadly fear of going one more night without.  So down the hatch it went and I went out like a light on the nasty plastic mattress.  And woke at two in the morning.  Wide awake.  So down to the front desk I went to ask for another pill, and down it went too.  In the morning, I felt groggy and sick, but once that feeling wore off, I felt great!  It was like the first time I took Xanax, everything was roses!  I was in a locked psychiatric ward, but I was happy.  I loved all my fellow patients, I loved the nice mental-wellness classes we had to attend.  I was finally going to get better.

The only problem was that little green and white pill.  That had to go.  I was not going to fall for that again, no way!  I was too smart for that.  And thus began a harrowing journey through the nightmare-land of psychiatric drugging.  I tried a different pill almost every day, and by the time I was released from the hospital, I felt like I had been through a meat grinder.  And I was on Temazepam.  Every medication given to me had made me incredibly ill, one of them dangerously so.  Every one of them except for the big T.

Part 3

I knew I had to taper, that much I had learned from my experience with Xanax. I had taken Xanax for a measly 3 weeks, and quitting it cold turkey cost me over a year of illness. I perceived that it had almost cost me my life. Benzos have very few side effects when compared to other psychiatric drugs, but once one of them gets its hooks in you, you cannot just quit.

I was reeling from the chemical merry-go-round I had experienced in the hospital. I felt like a person with Autism. I had to protect myself from light, sound, smells and anything that might cause any kind of emotional stress. Some days I would regularly hide my head under a blanket to avoid stimulation. Even in the car.

I had a plan. Even in my brain-mashed state, I was capable of planning. I decided that I would allow myself to sleep on the 30 mgs of Temazepam for about a week, and then I was going to find a way to taper off of it. It did not even enter my mind that I should stay on, and my doctor agreed. Unbelievable! I had a doctor who understood how bad benzos are! There was only one problem: he did not understand how much damage a fast taper could do. He wanted me off, NOW. He gave me two months and a taper plan that would have nearly killed me. My first dosage cut on his plan caused a cascade of horrific symptoms from which it would take me months to recover.

Fortunately, I found a prescribing nurse at the mental health clinic I had been referred to by the hospital who did not want to see me descend into emotional chaos again and was willing to be my prescriber for a slower taper. And so began a very long process which I have not yet completed. My original plan involved a 6 to 8 month taper. It soon became abundantly clear that if I was going to taper at my body’s own pace, I would not be done in 8 months, or a year, or even 18 months. This taper has been like one of those bad dreams where you’re trying to run away from something dangerous, but you feel like you’re moving through a vat of pudding. Or having to stay very still and quiet to avoid danger when all you want to do is run like a mad woman.

The beginning of my taper, about a year and half ago, was horrific. The first few unwisely large cuts had made me incredibly ill. I always felt like I had swallowed battery acid. I was on fire from my mouth all the way to my stomach. I was not sleeping again. I was in all sorts of mental and physical agony. That began to change after I wisely took some advice I received on a withdrawal support forum and spread my dose out a little. I also slowed my pace, holding my dose whenever the cuts became too difficult to handle. I gradually began to become marginally functional.

It’s never easy. I’ve been sick for two years. But I have abundant hope that I will heal, and that is what I want to focus on always. That hope is based on fact, because I am healing. I now take 3 mgs of Temazepam, down from the original 30, and I continue inexorably on to the finish line. I often have windows of almost total normalcy. I sleep. I drive. I homeschool my kids. The future is bright!