My Story

Chemical Sensitivity…From the Beginning

Sometimes I say that I’ve been sick with multiple chemical sensitivities for 14 years, since we built our home.  It’s true that 14 years ago is when I began to become aware of what was happening to me.  But in truth, I can trace it back much farther than that.  Exposures tend to build, adding gradually over the years to our ”total load”.  I know that now, but I didn’t know that then.

When I was about 1 year of age my parents bought a brand new house located in a brand new housing tract on the edge of town.  It was the late 70′s and the building industry was changing.  Whereas houses had been built using mostly natural or non-toxic products up through the 60′s, by the mid-70′s things had begun to radically change.  One of the new materials, Urea Formaldehyde Foam Insulation, or UFFI became the industry standard and was most likely the type of insulation found in our new home.  It was later found that this particular type of insulation out-gassed so much formaldehyde that it could cause the air quality within a home to become toxic.  Insulation, however was not the only toxic culprit.  Particleboard subfloor and shelving, carpet and carpet backing, sheet rock, paint, finishes, and glues all out-gassed toxins which could contribute to unhealthy levels of indoor air pollution.  Fortunately for me, my young body seemed able at the time to handle the toxins I was exposed to in that home reasonably well.  But it was the first of many big exposures that would eventually culminate in illness.

When I was 7 years old, we sold the little shoebox house in town and bought a turn-of-the-century farmhouse out in the country.  Our new home was like paradise for a 7-year-old.  I loved it.  And I loved the hills and woods that I was now free to roam.  In spite of the beginnings of arthritic degeneration in my joints, I remember feeling the healthiest I’ve ever felt in my life during the early years of living in our big, drafty house.

In my middle school years, my teachers began to expect my writing assignments type-written.  We had a computer, but unfortunately it was located in the shop where my dad rebuilt and refinished pianos.  He had been careful to install a powerful ventilation system and usually wore a gas mask when he was using chemicals.  But It wasn’t enough to keep me from feeling quite ill when I was sitting at the computer in the little office inside the shop.  The feeling from inhaling those fumes is hard to describe.  It was like what I imagine a frontal lobotomy would feel like.  I just couldn’t think.  My head hurt.  I felt as if I were floating.  My sense of smell was destroyed for hours after an exposure.  I remember thinking just as I was leaving the shop that the fresh air seemed to smell like mushrooms.  I have no explanation for that.  Fortunately, the shop fumes didn’t seem to tear my health down very much.  I do remember struggling with various health problems in my teens, but I was still functioning quite well.

In the summer prior to my senior year of high school, a massive remodeling project on the school building had begun.  By the time school started in the fall, the project was still in full swing because of earlier delays.  In spite of that, school was in session and we were forced to breath in the toxic soup of carpet, glue, and paint fumes.  In addition to that, the construction company was still in the process of tarring the roof.  I remember having to go home sick on multiple occasions because the tar fumes were so severe.  The school had no objections.  They knew they were making students ill.

At the same time that I was dealing with the abysmal air quality at my school, I was also working part-time in the press room of the local newspaper.  The ink fumes at work were overpowering.  Although I became accustomed to the smell while working, I recall coming home with a splitting headache nearly every day.

After graduation, I quit working at the newspaper and started my own housekeeping business.  It seems like this must have been a step in the right direction as far as toxic exposure goes, and maybe it was.  But cleaning chemicals are definitely not harmless.  At the time, I didn’t think about the fact that all the bleach and Endust and toilet cleaner I was using might be harming me.  I just knew that I didn’t feel well and that I had to lie down on the floor several times during each cleaning job so that I could recover enough to keep working.  I was still at this point functioning relatively well when I was not being exposed to strong chemicals.  I was active and mostly happy.

After getting married in 1995, I found out that my grandmother had recently been diagnosed with a particular rare type of arthritis called Spondolo Arthropathy.  Soon, my aunt was also diagnosed, and then my cousin.  Since I had struggled with pain and exhaustion since childhood, I decided to go to the rheumatologist, and was subsequently also diagnosed with SA.  I felt that had to be the explanation for most of my health troubles.  I now believe that SA was simply the name given for the particular set of symptoms that were the result of living in a toxic world.

In the year 2000, I was expecting my second child.  My health had not been great, but I was plodding along as best I could.   We had just built a brand new home, and because I had read some information on carpet and allergies, I had decided to put hardwood and tile floors all through the house.  I thought this would prevent any possible illness from living in a brand new house.  I was wrong.  That was the year that my body said no.  It had had enough and it started to really rebel.

Although I was aware that the chemical fumes in my house were making me ill, and that walking into a hardware store would lay me out flat, I still did not comprehend the full scope of chemical sensitivity.   I became sicker and sicker, and eventually concluded that the fad naturopathic diagnosis of the day, systemic yeast infection, was the main reason for my increasingly debilitating symptoms.  I did, indeed, have systemic yeast, but it was not the reason for my illness.  It was a symptom of it.  It was an opportunistic infection brought on my an immune system ravaged by chemical toxicity.  It brings to my mind one of the more macabre nicknames for MCS, “chemical AIDS”.  The more I tried to kill that yeast with anti-fungal supplements, the sicker I felt and the more desperate I became.

I eventually ended up in the office of a chiropractor who promised to heal me completely within six weeks with a  very strange treatment called Neuro-Modulation Technique, or NMT.  Although I had some misgivings about the strangeness of the treatment, I went ahead with it.  The man kept his promise.  I did indeed feel healthier than I had been since childhood after a period of about six weeks.  I cannot say why his treatments worked, but they did.  But because I became increasingly disturbed by the strangeness of the treatments, I discontinued them.  They were so strange that even the lure of complete healing would not induce me to try them again, even now.

My health began to fail once again not long after I stopped visiting the chiropractor.  In spite of that, I became pregnant one more time.  This time, it was different.  I was so sick during this pregnancy that I was afraid that I would lose the baby.  I was somehow able, with the help of Jehovah and a good midwife, to drag myself through the entire pregnancy and give birth at home and at term to a seemingly healthy 7 lb. baby boy.  And because I discovered the power of homeopathy, I actually became much healthier after the pregnancy.

What happened after the third month of my third baby’s life could fill a book all on its own.  Suffice it to say that he became extremely ill from eczema infected with impetigo.  The infected rash spread over his entire body and no amount of antibiotic was enough to make it go away.  Once that seemed somewhat under control by various homeopathic and naturopathic means, he began to have troubles breathing.  By 18 months of age, although there could be no definitive diagnosis because of his age, he was for all intents and purposes, suffering from severe asthma.  From that time until he was 3 years old we were in and out of hospitals and he had been on nearly every one of the most evil types of asthma medication available, a couple of which he kept taking until very recently.  This, as you can imagine, took an enormous toll on my physical and mental health and I eventually ended up in the situation that I describe below in my post, Chemical Madness.

I am now fully aware of what multiple chemical sensitivity, or MCS, is and how it is affecting my life and the lives of my children.  I wish with all my heart that I had known 20 years ago so that I could have prevented some of the harm that has come to myself and my family.  But how could I have?  MCS is a hidden disorder.  It is a much maligned and misunderstood disorder.  To understand it, one must understand the whole evil underpinnings of our greedy commercial system.  Who wants to think about that?  Who wants to acknowledge that our entire way of living is toxic, built on lies and greed?  That’s a real downer, right?

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), not realizing that Ambien (a “non-benzodiazepine” or “z-drug”) and Xanax are both potentially 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”.

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 a friend’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, the pneumonia I had only partially treated came raging back much worse than it had been before.  I had to take antibiotics.  Killing the infection 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 quit 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 into 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 4 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 upon 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. 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, two years 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.  As I got lower and lower in dose, I began to feel more and more stable.

Since April 14, 2014 I have been free of all medication.  I am, as I’ve always told myself, getting better and better.  The nightmare is over.

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8 thoughts on “My Story

  1. Pingback: Behind the Mask | Sound as a Crystal

  2. Thank you for this. I try to educate others on the dangers of toxins. I am always saying, know what you put into your body. This was why I started a company making organic skin care products. I use simple, raw ingredients. The problem is, many are more comfortable with the known names filled with toxins.

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  7. Hello sister.
    Someone on MCS Australia’s FB page posted one of your posts. That led me to read this one. I can, like most of us, relate to a whole lot of what you went through, although I flat out refused when a Doctor wanted to put me in a Psych ward in order to change the meds I was on. I just knew I had to come off them and went through a dreadful week of acute Illness and pain doing so, and never told the Doctor. I did however try other anti-depressants and sleeping pills, until I finally decided that I had to get off ALL meds. I have been med free for about two years now, and have since discovered that even the pain killers I was on for migraines instigated allergic reactions. I have concluded that drugs are not my personal friends. It took well over a year to stop feeling the effects of those meds, and I wavered somewhat, wondering if I had made the correct choice or not or if I could recover emotionally without them. Migraines without pain meds are no party either.
    It absolutely does take such an incredible amount of time to understand what your brain and body are trying to tell you and during that time you reach out for help and the help you are given often does you more harm than good
    . MCS sufferers usually come to realise that meds are CHEMICALS, and although they can be “helpful” to some people, we are usually not of that group.
    Enduring to the end of this system when one is chronically Ill is a real challenge and will continue to be so, I decided a while back that this is my personal torture stake and I would have to go on carrying it, but I am determined to learn and research and do all I can do to make it a whole lot lighter if I can.
    Thanks for telling your story xoxo

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