Saturday, April 30, 2011

How I Got This Way - Phase 5

Chapter 5:

Well, I took everything that Dr. Smith said and researched it. After all, I'd basically learned that I couldn't trust anyone. Anything that I couldn't find a scientifically substantiated basis for, I discarded. Everything I learned was a new clue. I gathered the pieces together, like building a puzzle. One of the things I liked about Dr. Smith was that he, himself, was an avid researcher. When I had been in his office, there was a four foot high stack of research material on his desk. I've never seen him without an at least a two foot high one. The other thing I respected was that he, himself, had chemical hypersensitivity.

He called it MCS. But I had discovered that calling it that anywhere but in the state of Washington, was fool hardy. Everywhere else in the world classifies MCS as a mental disorder that requires psychotic drugs. That, due to the toxicity of the drugs themselves, destroys the patients who take them. I was ahead of the game on understanding this because one of the books I had read in my MSG study was Dr. Russell Blaylock's book, "Excitotoxins, the Taste That Kills." He details very explicitly what happened to the brain on toxic substances. I'd already found that I reacted badly to all pharmaceuticals and had gotten quotes from four of my local pharmacist, and two doctors, that said, "All pharmaceuticals are toxic. All pharmaceuticals have side effects." Seeing a psychiatrist or psychologist is a death sentence for the chemically sensitive. But that's where they send people with MCS, outside the state of Washington. To carry that diagnosis, is another fight, I didn't need. Dr. Smith, unaware of that attitude in Oregon, gave me that diagnosis. It made the Regional Director of Voc. Rehab. very happy, her reign of terror was concomitant with my finding an EI doctor. I guess I should be more explicit, none of the battles that I write about, occurred at a time that nothing else was going on. If I wrote about them all at the same time, I'm afraid, dear reader, you'd lose your mind.

This brings us to my son's graduation. I was diagnosed in March of '04, and my son graduated high school in June. At the same time I was beginning Voc. Rehab. I was also trying to figure out how I was going to attend graduation! These kinds of once in a life time, historical family events, that we're forced to miss, due to a disabling disease, that was not our fault, are tragic and heartbreaking for the chemically sensitive. I refused to accept it. I focused a section of my research on, 'how I could protect myself and go.'

One of the most detrimental things that we do to ourselves is refuse to accept that we are that sick. We keep pushing to participate in "normal" life and tell ourselves that if we do 'this and such', it won't be that bad. We all do it, because we want to be involved. We don't want to do without, depend on other's for everything or be isolated and excluded. So, I looked at haz-mat suits, independent breathing apparatus, VOC filter masks, etc. My son was horrified at the thought of me attending in a haz-mat suit or a big, black rubber 'grasshopper' mask. O.k. So that wasn't going to work. One, it would put all the focus on me, proving that I was a wierdo. My son would be emotionally scarred, and all the "protective gear was made of petroleum or synthetic by-products.

Up to this point I've managed to leave out a horrifying side story that developed along with all the other crap. Remember, nothing happens in isolation... So let's digress, just so you understand the importance of not using petroleum by-products or synthetics.

If you'll remember, my daughter was away at college. Like the supportive mom that I wanted to be, I was making the five hour journey down to see her once a month. Most of the time, Ron and Ryan came too. I don't remember exactly when it happened, the onset was gradual. At first I didn't notice. Good thing for hind sight. When we'd go down, Ron and I slept on an inflatable bed. It was made of vinyl. That's poly vinyl chloride. It's toxic. Another thing I didn't know. I wasn't sleeping well and I'd wake up with pain all over and I couldn't move. And I was cold. No, make that frozen! Didn't connect the dots. I bought this polar fleece zip up bathrobe. Nice and toasty. Polar fleece is a petroleum by-product. Toxic. I started to have stinky sweat, and heavy night sweats. Didn't connect the dots. Then finally, on one trip down, where Ron was driving, I reached my maximum load... About three and a half hours into the trip, I could smell this horrible odor. It smelled like roadkill. It was me. Every where that my body, through my clothes, contacted the synthetic upholstry, my skins cells were dying and decaying. They formed a thin, black, gummy paste. It took me five showers, with baking soda as a scrubbing agent to remove it. I also had to wash those clothes multiple times to get the smell of decomp out! Those of us with Toxic Injuries call the stinky sweat, "Toxic Sweat." the other, is called "Death Sweat." it is common, with in our group. So that is why, I had to find a non-toxic way to access Ryan's graduation.

I hadn't found a solution yet, but I contacted the School Assistant Superintendent, and made my accommodation request. He balked. I wielded the ADA Title II like a club. After a few well placed blows, he got on board. He turned it over to the Maintanance Engineer at the High School. That kind gentleman came up with some very UN orthodox but clever ideas. All of which we had to let go, due to the 'embarrassment factor' for my son. In the end, we compromised, assigned a section of the seating as fragrance free, and our family a subsection of the seats, with direct, easy access to two open gym doors, with a cool breeze blowing in. I had a chair outside and could quickly come in for the few moments of the important parts. Ron taped the rest. In my search for VOC filtration, I discovered a woman that made very plain, beige face masks. They held a charcoal impegnated VOC filter. While we tried to keep it very low key, I still felt like a freak. But, I got to see my son graduate.

Friday, April 29, 2011

Addendum to Phase 3

I reread phase three and realized I left out a pertinent part. So here it is...

Spraying for melons actually begins the last week of February, or so. By May of '03, I was noticing a lot of flu like symptoms following certain teaching assignments. I just didn't connect my symptoms to the spraying. I wasn't aware of it until that incident with Alex, later that summer. At the time I started to put it together, causal factors and sypmtoms, I remember realizing that it was becoming popular to have those plug in air fresheners in the class rooms...The school year ended, and I continued on through the summer, just being me. I worked the farm and picked up an occasional survey job, every now and then. Since I'd retired from full time surveying, Ron had taken a job with a local Port District. They needed to hire my services. I was after all, 'the best Party Crew Chief, around.' (When five local Professional Land Surveyors collaborated on a landfill cell, they hired me to run the gun. The Part Crew Chief is the boss. They are the person that tells everybody where to go, when to jump and how high. And I was good at it.) So, the Port had Ron ask me, if they put together a crew, would I run the gun. Since Ron was in control of the project, I said yes.

Ron let me know that just he and I would begin the project, then after their regular start time, a crew from the maintanance department would join us. We were running a topographical survey, for a construction project. A company was developing the site and putting in a large facility. The first step was this topo, so they can estimate earthwork.

Ron and I set to work. Ron runs rod, and I mean 'runs.' there's no dawdling. We're both competitive and we were always trying to out do each other. His goal was to get to the next point before I finished typing the notes in the data collector. That way he could give me garbage about being slow. And mine was to get the shot the instant he had the glass up and level, so he didn't have a chance to rest. Onery, I know, but he started it. Well, we were rip-tearing across the property and 9:00 o'clock came and went. No crew. Then finally, at about a quarter past 10:00 a maintanance vehical showed up. They pulled onto the lot, we kept working. They didn't get out of the truck. I could see the passenger had his feet on the dash. We just kept working. Eventually they decided to get out. There were two young men. The one on the passenger side kinda slung himself out of the pick up. In one hand he had a can of coke. He stood there for a moment, checking me out. Then he sauntered over t'words me. I stopped shooting points, smiled and greeted them, asking if they were ready to work. Unbelievable! The kid looked me up and down in the most insulting way.
I changed to a very business like demeanor and said,
"Let's get to work, boys. Each of you will need a rod. They're right there in the back of the car." the creepy one, kept walking t'word me. He was still holding the coke, so I said, "You'll have to put the pop down, you'll need both hands." he just smiled really viley, ignored what I said, and kept coming t'word me. I repeated my self, more firmly. Still no change. I switched to "school teacher, Mom, and bitch mode, and snapped out,
"I said, PUT DOWN THE CAN, YOU'll NEED BOTH HANDS. OBVIOUSLY YOU CAN'T FOLLOW DIRECTIONS, OR YOU DON'T TAKE DIRECTIONS FROM WOMEN, SO YOU'RE OF NO USE TO ME. YOU CAN LEAVE." He didn't. So I said, " GET THE HELL OFF MY PROJECT." He started to move t'word the vehicle. I said," AND NO, YOU DON'T GET THE TRUCK. LEAVE THAT FOR SOMEONE WHO WORKS." Then I turned to the other young man, smiled nicely and said, "You ready to work?" he said,
"Yes, mam!" I quickly showed him what to do and we went to work. The creepy kid stomped off.

When Ron's boss showed up to find out what happened, I was informed that I had a vendetta against this kid's uncle, and that's why I'd treated him that way. I didn't know who the kid was, and I didn't know who his uncle was. Turned out, his uncle was an Ag- pilot. The one who had dropped chemical on my children, my livestock and my property, not long after I got sprayed with Monitor. I'd reported him for dropping chemical on my property, so he dropped it on my house and children. I reported that too. To this day he strafs me, sprays my yard with herbicide, and flies over my house well below the 500' ceiling. Many times he's flown over at less than 40 ft. off the ground, between my house and out buildings. And I'm supposed to have a vendetta against him. I found out his name back when he dropped chemical on my kids. Gene Moss. I'm betting, this is the guy that sprayed me with monitor.

Thursday, April 28, 2011

How I got This Way - Phase 4

I made an appointment with my allergy- asthma doctor for the 10th of March, 2004. It was the oddest appointment. The whole time I was telling him about my symptoms, he kept interrupting me to ask if I had a runny nose. I kept telling him that I hadn't had a runny nose since I discontinued eating wheat. Then he interrupted me again and tried to force an asthma inhaler into my hand. I refused it and reiterated that they made me sick, and I hadn't used one in years. He insisted! I refused again and listed the symptoms that occurred every time I had tried to use them, ending with, "So, what do you call that?" I expected him to say, "brain seizure." But he didn't. He said,

"Chemical Hyper-sensitivity." and he was crying! Then he said, "There is no treatment; there is no cure; it will only get worse with every exposure. Go home and avoid all fragrance." (remember, at this time, no one was connecting the dots to pesticide exposure, and my reactions appeared to be linked to fragrance.) 

I remember realizing that he was telling me to go home and die. I thought to myself, "Like hell, I will!" then he went on to say,

"I won't see you, I won't help you, don't ask me. Find an EI doctor." and he got up and left. I was stunned. My world was rocked. I liked that Dr.. I thought he was a decent man, until this. I got up, gathered my things and left quietly. I felt shocked. But, not enough to prevent me from pausing at the front desk and sweetly request a copy of my chart notes be mailed to me... Which was a good thing. Later in desperation, when I did call his office for help, I was told that my chart notes said, I came in on that date for "a runny nose..." Either they lied, or they falsified my record.

When I got home, I went straight to my computer and began researching. I didn't know a thing about "Chemical Hypersensitivity." I spent almost everyday there, for months. I read, I sifted, I dug. I realized that a number of the people who had been in my fibro group, had this. They just didn't know it. 

I quickly discovered the huge controversy surrounding this condition: it is chemical poisoning by consumer product and environmental toxins, manufactured by the same chemical companies that manufacture pharmaceuticals, that mask the symptoms of the diseases brought on by the industrial and consumer product chemicals. Not only that, all the schools and licensing boards of allopathic medicine are controlled by the chemical companies. Dr.s and researchers who recognize, or diagnose, this condition are black balled, lose their license, funding or standing. Chemical industry dollars control universities and government. That explained my doctors horrifying behavior.

Meanwhile, in my real world, the sky was falling. My research showed that avoidance was the only effective option. I could still do a job, I just needed a fragrance free environment.  But, no one wanted to be bothered to accommodate me. I very quickly realized the prevalence of fragrance and the hostility of people who were asked to accommodate my medical need to avoid it. I worked one more teaching job and was told that "it was too burdensome to accommodate me. 

If I couldn't find an employer that would accommodate me, It meant that I had to withdraw from life. I balked. I pitched a hissy. I had screaming temper tantrums! I did not want to be disabled!! I still possessed talents and skills that were valuable. I felt sure there was someone who would hire me.

I began Vocational Rehabilitation and filed a Workman's Comp claim. Neither of which went very far. The level of anger, hatred, distain and bigotry was unimaginable. The Regional Director of VOC Rehab made it her personal mission to prevent me access to that public service! She fought me at every turn and made my life a living hell. She refused all accommodation and removed my sympathetic counselor and replaced him with a like minded vicious bitch. I got a lawyer through the disabled program, we had a hearing, and I won. I got my good counsellor back. It was a precedent setter. Which pissed her off even more. Unfortunately, she was still the regional, through which everything I was doing had to pass. She held me to a much higher standard than anyone else, according to my counselor, and bullied and harassed me at every opportunity.  I finished up with my VOC Rehab services as soon as possible, and walked away. I later learned from my counselor, that regional was suffering from horrible, debilitating fibromyalgia. God is just.

As far as the Workman's comp claim? They insisted that I see their doctor, without accommodation. (which is an ADA violation!) They were unyielding. There doctor just happened to be the doctor who was giving a seminar on "Multiple Chemical Sensitivity, the Centuries Biggest Scam." I could tell I was going to get a fair hearing from this guy. (dripping with sarcasm)  I withdrew my claim under duress. 

But it didn't just stop there. It was every state and local government agency. It was every private entity I needed a service from. I had to take them all on. On the turn of one day, every moment, every aspect of my life became a battle or a persuasive argument. Everywhere I went, I was assaulted by chemicals. If I was going to preserve my health, I was supposed to avoid chemicals. I couldn't do it! 

I was so nieve, I thought people would be understanding. Especially those in the medical community. Once I had my diagnosis, I was dumped by my family doctor, my chiropractor and my Ob/Gyn, as well. They wouldn't even consider accommodating me. By this point, I'd been screamed at, spit on and thrown out. My dental assistant did accommodate me... She scaled my teeth in my car.  My opthomologist, too. He decontaminated his whole operatory. But he charged me extra, another ADA violation. I paid it. I needed my eyes checked. 

 I still had to find an Environmental Illness doctor. With my track record so far, talking to doctors ranked right along side of "being hit by a car." I guirded my loins and waded in. Some research turned up someone named "Dr. Smith." he practiced alternative medicine, and was an MD. I thought of "Lost in Space." At that time, everything about alternative medicine was suspect to me. I didn't trust any doctors. But I made an appointment, and went to see this guy.

Oh, dear! He practiced homeopathy and muscle testing. Both of those disciplines were way to "subjective" for me, a bred to the bone scientist... My mother holds her B.S. in Nursing, my father a degree in Engineering and a MA in Math. We ate science for breakfast in our house, growing up.

Poor Dr. smith, he is so incredibly patient! And persevering. His first impression of me was probably that "somehow he took a wrong turn and ended up in an exam room with a feral cat!" But, he arranged for several tests,  prescribed me some supplements and assured me that we could treat this. He also advised me that it takes from 2 to 7 years, depending on how bad it was. After my test results came back, he said I was going to be in treatment for a long time. Given my recent treatment by the medical profession, that statement only increased my suspicions more. All my subsequent visits I insisted on seeing him, outside, behind the complex at a picnic table they had for staff. Their office reeked and made me sicker. By golly, he accommodated me. Things were looking up.

Wednesday, April 27, 2011

How I Got This Way - Phase 3

So, I brought up my physical injuries and my struggle because, physical trauma and stress deplete glutathione, as much as chemical injuries. Many people assume that I have a genetically inferior constitution. That's just not true. In fact many of us that contract Toxic Injuries like chronic fatigue, fibro or chemical hypersensitivity, are the strong ones. Persons with weaker constitutions would have died, or developed cancer, heart attack or stroke, etc. In fact, many of us, the Toxically Injured have those and many more chronic illnesses and we survive, maimed, for years. Just something to think about.

Peggy, my fearless leader, and I are putting it down to 'just plain stubbornness.' it is both my best and worst character trait. It is most likely why I'm still alive (a view endorsed by my EI doctor) and why I continue, like Peggy, to work myself to a stand still (lay down) to help others with this condition.

But, on with the show...

In '02 my eldest child went off to college, to study Entomology. She would come home during the summers to work at the Experiment Station. The summer of '03, Pollucks rented Baccus' place to grow melons. Alex and I were hoeing goathead weeds along side the road when a rather large, arrogant, young, white male came roaring down the road in a white pick up. He spied my beautiful daughter and slewed to a violent stop, six inches from striking me with the pick up. He was so intent on leering at her, he didn't even notice. In his best impression of suave he said, "just thought I'd stop and be neighborly." this was delivered with an arrogant smirk that was only marred by the conflict the leer was having on his face. It's difficult to look cool when your drooling... 

Obviously, I was not impressed with the lie, as it was obvious from his rate of travel, that had my lovely daughter not been present, he would have barreled by in a cloud of dust, undoubtedly kicking up gravel. I stepped in front of Alex. He craned his neck to look around. "So what, exactly was it you wanted?" my voice cracked out like a hammer hitting up alongside his head. Didn't even phase him. His greedy little pig eyes continued to leer. I stepped over in front of Alex again, forcing him to recognize me. I'm sure the look on my face was NOT neighborly. He decided to adopt a condescending tone, and informed us that they were going to apply a little Bravo, on Baccus's place, but it was completely harmless, "nothing to worry (our) little heads over." Had I not been there, I'm sure he would have said "pretty little head..." oh, brother! Anyway, I shot back with, "that's a pesticide right? All pesticides are harmful, they're biocides, which means kills living things" (incidentally, I'd got that info from Alex, but neither of us wanted her talking with that guy.) he argued, I told him I'd look it up, thanked him and requested that he keep me informed of all chemicals that they put down, due to my previous chemical injury. Alex by this time was making sure that she stayed behind me, and adjusting every time he'd try to look around me. He roared away in a huff, showering us with gravel. We were never told of another chemical application, though they applied every week.

Baccus's place is less than 500' from us, kitty corner across the corner of another field. Research shows that toxic drift always occurs inside the homes at (a median average) of 500'. 

By this time, I had chosen to retire from surveying, as there were other incidences where some farmers were less than honest about chemical applications. I'd returned to teaching. I chose to substitute. I love the variety, the challenge, and the fact that you don't get stuck with a "really bad class." Every teacher is supposed to take a rotation of who gets the difficult kids, for their grade level each year. I'd go nuts if I had to deal with those out of control kids everyday, all school year. As a substitute, you can decline to take those classes. I'd resumed teaching the fall of 02. Spraying for melons actually begins the last week of February, or so. By May of '03, I was noticing a lot of flu like symptoms following certain teaching assignments. I remember that it was becoming popular to have those plug in air fresheners in the class rooms. 

The school year ended, and I continued on through the summer, apparently unchanged, though I'd begun to have problems with the laundry detergent aisle at stores, and places like candle stores and Bed Bath and Beyond. Then at the end of the summer, my father put together a family reunion on the Oregon coast, in yurts.  The Last morning we were there, I woke up early to the sound of a spray truck moving thru the camp ground. They were fogging for Mosquitos. It was probably a hundred feet away. I didn't think much about it. By the end of the day (when we got home) I had the worst "Migraine" I'd ever had! Every sensory organ was hypersensitive. I could feel vibrations from the train more than a mile away, and they hurt. Noise, light everything, was horribly painful. I can recall being curled up in the fetal position, with a black towel over my head. It lasted for a week. 

The school year returned and I went back to a work environment that was inundated with plug-in air fresheners. By mid winter I had recognized the correlation between my "flu like symptoms" and working in a room with a (or a wing, with several) plug-in air fresheners, or fragrance emitting devices.
I was confounded, for awhile as several non fragrance rooms elicited the same response, they contained toxic sharpie markers...

February rolled around again, (04) lambing time for me. The melon farmers were now renting the Voile's piece to the north of me. This year, it was Bellinger Melons. So while I was laying on my belly pulling lambs, they were drilling, 'fertilizer.' I wasn't paying too much attention, after all, it's just fertilizer, right? Wrong! But I'll stay on track and save that discussion for another day...

I remember, everything jelled for me the first week of March. I'd been asking the schools to put me in rooms that didn't have fragrance. This school put me in the "special needs" room. The secretary swore there was no fragrance. There was an automatic fragrance emitter, in their private bathroom, that went off every 10 minutes and on a motion detector; one of the 5 assistants had a Glade solid air freshener on her desk; all of the assistants used aroma therapy hand lotion and slathered it on the kids. All fragrance contains pesticide. All neurodegenerative diseases and behavioral disorders are exacerbated by toxic substances, including fragrance.

It was "Read Across America" day, or "Cat in the Hat" day, as the kids called it, in honor of the official mascot. The whole school was supposed to spend the entire day reading. Thank God, it was a relatively warm day. I was so sick, I couldn't function in that room. I moved us all outside, onto a blanket, and spent the whole day reading to the kids out there. Every time I'd come back into the room I'd get horriby ill. I remember having to ask one of the children to please sit down wind of me, she was drenched in her mothers perfume. She was also the secretaries kid...

I had one more job at that school that week,  it was in a split K-1st. I made sure there were  no fragrance emitters. I warned the secretary, that I would not work if I arrived and the room was fragrant. It wasn't, but every other room in that wing had at least one. Every 10 to 15 minutes a group of children would go in or out of the room. Every time they opened the door, a wave of fragrance would roll in. The children that spent time in the fragranced classrooms became saturated with toxic VOCs, that they brought back to this classroom.

I was teaching with the outside door open, in effort to keep the air fresh. By 10:00 a.m. I had a migraine, and the lights were glaring. The children began to complain that they couldn't read my hand writing on the board. I tried, but I couldn't fix it. My field of vision progressed to blurred and flickering, I was staggering, in horrible pain, and getting nauseous. When lunch time came, I had the assistant take them to the lunchroom, and informed one of the team teachers I needed her to do my lunchroom duty. (Considered very uppity for a sub.)  no sooner had the door closed behind the last child than I called down to the office and informed the secretary that she needed to get a sub for the sub. She responded, "Couldn't ( I ) just hang on for a couple more hours?" 

I said, "no." she said,

"Well, just think about it."

I hung up the phone and went to the sink to splash my face with cool water. Ten feet away, I projectile vomited violently. I hit the sink. After mopping up the mess, I called her again, informed her that she needed to get that sub and send a janitor, I was going home. 

I took a chair and sat outside, breathing in the fresh air for a few minutes, before I wrote the teacher a note, gathered my possessions and staggered down the hall to the secretaries office. She was furious. I signed out and headed for my car. I remained slumped over the steering wheel for some time, windows open, trying to gather myself together to drive. I didn't have to get far, just to my husband's office, about a mile or so away. 

When I began to feel a little better and my visual field returned, somewhat, I eased the car out of the space, and the parking lot. I crept down the deserted road. This was a country school in a one main road town. I made it about half way, and had to pull over. I parked along the road, in front of the gas station and projectile vomited again. Luckily, I just happen to have a large plastic container with a lid... Teachers carry all kinds of stuff with them. My vision was failing again, so I called my husband. It was Commission meeting day, so I had to get him out of the meeting. He was very displeased. He told me I'd have to wait, until after his presentation, a couple of hrs., and couldn't I just finish driving home myself? I said no, and then assured him, following his next interrogatory, that I would try to make it to his office.

He hung up, I laid there crying for awhile. I never cry very long, it doesn't accomplish anything. I put something over my eyes, opened a window, and tried to rest and gather strength. After awhile I felt a little better, so I drove slowly out of town, about 3 more blocks, and continued on to his office. I parked there and rested miserably in the car. I did move to the passenger seat. Eventually Ron came out, and slammed into the drivers seat. He was pissed. He didn't even wait till we were out of the parking lot, before he began berating me for interrupting his meeting, and my leaving work early. It was a mortal sin! He said, 

"couldn't you have just hung on a few more hours?!"

I projectile vomited in reply. He shut up.

How I Got This Way - Phase 2

There were four years between that spraying and my diagnosis of fibromyalgia, and to skip over it would be a disservice to my readers. You see, many of you may be in a state of gradual health decline, and not realize it. I am not alone when I say that I'm the kind of person that just keeps pressing forward, no matter what. - Just like so many of you. We keep going, and ignore the little accumulations until suddenly we realize, "wow! This is really bad." That's how it was for me. 

Fatigue and weak legs were some of the symptoms that began to plague me shortly afterwards. I wrote it off to a very busy life... Not only were we surveying eight to ten hours a day, but I was also the office manager, the bookkeeper, the secretary, we had a farm, and I took care of the livestock, bucked bales and drove hay truck. I also had two young children at that time, that were involved in multiple groups and events. In addition, I was active in several church ministries. There's more, but this list already makes me sound like I should have been wearing spandex and a cape, so let's move on. Suffice it to say, I was extremely fatigued and thought it was do to my non-stop lifestyle...

I began to notice things like, wearing any kind of shoes with foam insoles, made my feet hurt so bad, it was all I could do to stand. I had to stop wearing my irrigation boots as the rubber would peel off the skin. I had this great pair of L.L. Bean muck mocs. They are rubber & leather, they had to go. My feet reached a point where they felt like every bone in them, and my ankles, was broken. It was so bad, that it actually caused me to fall down the stairs, a couple of times... I scheduled an appointment with an Orthopedist, who was also a friend. 

He couldn't find anything wrong on the X-rays. He was the one that felt I should consider Fibro, by eliminating all other probable causes. That started a round of seeing specialists, that included nerve conduction tests. I 'lovingly' refer to those as "electro-shock therapy." the Neurologist hooks you up and tells you it won't hurt, then with the power down low, touches the electrode to himself. He smiles winningly, and says, "See, painless." Then, like an evil magician, while he keeps your attention focused on what he's doing, with the other hand, he reaches down and turns up the juice. Eventually, your cranked up to the level were you're spastically convulsing on the table every time he touches you with the probe. He says mildly, "huh, you don't appear to have any nerve conduction problems..." if I hadn't been so debilitated by the horribly painful procedure, I swear I'd have gotten up off the table and clocked him. 

Eventually, I ended up in front of Dr. Breland, a Fibromyalgia specialist. By this time, I had developed a healthy distrust of doctors, and a strong aversion to meds. Dr. Breland, himself, suffered from Fibro. He was treating it with some pretty toxic meds. That was what he prescribed for me. I firmly refused, explaining my history of reactions to meds. He became infuriated, and physically threw me out of his office. Whoa! I was left wondering, "What the Hell happened!?" But, I had a diagnosis, and began an intense course of research.

My research truthfully began, back in 1983, when I suffered migraines and "Chronic Fatigue.' the Ob/ Gyn I was seeing at the time (first child) told me I had "the flu." for five months. I thought at the time, "idiot, nobody has the flu for five months." I actually figured it out and treated myself, from two 60 Minutes specials. One was Dr. George Schwartz, The MSG Syndrome Complex, and the other was on Chronic Fatigue. I followed up the special with researching Dr. Schwartz and reading (implementing) his book. Removing all MSG from my diet, and then moving away, resolved the problem. I wasn't to know until much later, how much moving away had influenced my condition, and how horribly evil that Ob/Gyn was... 

When my children had hyperactivity problems, and irritable/aggressive behaviors, I dove back into researching food additives and discovered many more hidden sources of MSG, and the problems with red food coloring. Removing these things, improved all our health, and their behavior.

So, having that base to build on, and knowing what I already did, I combined everything that I already knew with everything I could find about Fibro, developed a protocol, and treated, and cured myself. I started a "Fibromyalgia Research and Support group" in my local area. Our first meeting had 144 members from a 40 mile radius. My goal was to pool everything we knew, assign areas of research to willing members, and improve that protocol. We did. While my project wasn't formal, we did have a control group, those that refused to try the protocol, and an experimental group, Those that did. Every person that implemented the protocol, in whole or in part, experienced remission of their symptoms, in purport ion to the degree that they followed it. Those that chose not to, continued with out improvement.

I even had one member that was so ill that she was "narcoleptic." based on my own experience with similar symptoms and what I did to cure it, I bet her that if she would stay on the protocol for two weeks she'd experience dramatic improvement. Her family members would bring her to group, so on her behalf, the did an intervention, and kept her on the protocol. Two weeks later, she was a different person! Alert, happy, the sister and daughter that they used to know. We reintroduced the offending substance, she was out cold in 10 minutes. What was it? Wheat.

 I should mention a tragic incident that occurred following the first meeting. There was one sweet little old lady that was suffering horribly, and I could tell by her symptoms, that a big part of it was MSG poisoning. She agreed and had been telling her family that's what she thought it was for some time... They just ridiculed her over it. I counseled her strongly about hidden sources, and advised her to avoid "Chinese Food" especially. I'd had reactions to the food here in town, even when I asked for "No MSG."  She was very excited and encouraged when she left. I got an irate call the next day.  Her family had insisted I was a "nut job" and to prove it, they took her out to Chinese that evening. She suffered a massive MSG poisoning, was hospitalized, and died that night. On her death bed, she stipulated I was to get several thousand dollars for my research. They were furious. They demanded that I produce proof that I was a charitable entity. I was not, nor did I do that kind of research (I do white papers; read other brilliant people's research and write documented, persuasive papers) but informed them that to meet the stipulation, they could make the donation to Dr. Schwartz' group, "No MSG" which was. They never did.

A couple of things happened with the group, all those that implemented the protocol, got better and didn't need to come anymore, and all those that didn't, got mad that one, we were feeling so great and they weren't and two, they got tired of us telling them to give up their 'addiction' or convenient and unhealthy lifestyle.  They quit coming. Just about the time those that remained, were going to stop meeting formally, I got rear-ended, on my way to the meeting.

From this event, I received three 'permanent' disabilities in my back. I had been stopped to make a left hand turn off a two lane hi-way, the guy that hit me, never even slowed down. He was uninsured. I ended up fighting my own insurance company, for an uninsured motorist claim. They wanted to pay me $2000, and my doctors were telling me that I could end up with reoccurring back surgeries every two years, that would cost me $250,000 a pop. My first neurosurgeon, had me ask the insurance co. for a letter from him. He especially, encouraged me to demand far more. I did as he recommended. Boy did I feel betrayed, when the letter he wrote said exactly the opposite, of what he'd told me. I found out later, that he was a well known "industry prostitute." Who ever paid him the most, got the letter the way they wanted it. The insurance company paid him well. I, of course, was forced to get two more opinions. I eventually squeezed a more respectable settlement out of them. Nothing near what I needed, which I deposited in a health savings account and prayed the interest would accumulate sufficiently, before I would need it.

I had actually contacted a lawyer, to get help with holding my insurance company accountable, and the lawyer told me to settle for the $2000. He said, "You won't get any more than that." I researched, and went to bat. When I called my lawyer, after I got the settlement, to ask him how much I owed him, he was amazed that I had got that much and told me I had done all the work, I owed him nothing. Just wanted to point out, an honest lawyer! 

My insurance agent forced me out. I made her look bad. I found out Agents are given bonuses according to how few claims their clients file. She wouldn't talk to me for years. Needless to say, my agency wasn't a good neighbor and they weren't there when I needed them.

By the time I had this injury, I'd reached the conclusion that allopathic medicine had limited uses. I was seeing my chiropractor twice a week. She was very intelligent and studying to become a naturopath. She started me on huge doses of C. Along with touch, not cracking, chiropractic treatments, it healed an amazing amount of the damage. According to the law, my insurance company had to pay for my treatment for two years...

This overlapped into the advent of my next big set of exposures.

Next time Phase 3

Tuesday, April 26, 2011

How I Got This Way - Phase 1

I get this question a lot. So I thought I'd tell the story here, so it doesn't get lost...

It was a delightful, early summer day. The wind, a zephyr, playing about the cerulean blue expanse of sky. I was young and full of life and health. I was 36, with everything ahead of me, and all the hard part behind... It was joyful, just to be alive. The sun was casting caressive fingers of early morning warmth across the rolling Eastern Oregon farm-scape, wide open, brilliant greens and smokey taupes.

I was working for my husband as his Survey Technician, running the Total Station. We were surveying a large farm, mapping the existing circles, so Ron could advise the client on the best locations, for future circles. It was a beautiful day. We had started early, to beat the desert heat,  as we had 50 circles to locate and miles to cover. Everything has to be tied together with control points and state plane coordinates. This was back before surveying was done with GPS, so your survey has to be physically closed, and you can't quit until it's completed, or you have to start over.

We'd worked most of the morning, and had only one "hop" left. We'd shot forward and set the next control point on the edge of one of the circles, on the crest of a knoll. I broke down the instrument, as Ron drove up in our gold 4x4 Toyota wagon. We called it our "little goat." It could go anywhere. We loaded up the gear and moved forward to the new control point. Ron dropped me and the equipment and headed back to the control point I'd just left. I set up, and shot back, to the control. Ron was driving from pivot center, to end gun, of each circle. My job was to shoot the coordinates of each point, record notes, make sure the data was accurately recorded.

I remember standing there, on that beautiful day, the wind lightly teasing my fly away hair out of it's clips, and noticing a little yellow plane come flying across the hills. I thought to myself, "what a beautiful day for a flight." I continued radio contact with Ron, as we shot the various circle points we could see from this control. 

The plane flew closer. He flew right by me, very close, I could clearly see the pilot as he buzzed by. I continued working, looking steadily through the gun, (the opticals on a total station,) and keeping track of Ron. It's important to work efficiently, and Ron no sooner got the glass (mirrors) into the air and steady, and I had the shot. I glanced up as the plane flew back by, the other way. He waggled his wings, at me. I wondered what he wanted. I frowned, perplexed, and radio'd Ron. He didn't know, keep working.

It was just about that time that the plane reached the opposite side of the circle, swung about, dove groundward and laid down a billowing trail of pesticide, across the center of the circle, 20 yrds from me. I was stunned!  I radio'd Ron, he said, "it couldn't be very bad, or he wouldn't spray with you there.". He'd seen the plane begin to spray. We were both surprised because, there was no external spray apparatus. We'd had no clue, that it was a spray plane. The owner of the farm was supposed to halt all spraying and harvesting in this section, so that we were unimpeded. The plane looped around and made another pass. He continued dumping pesticide right over the top of me. At about that time a farm worker raced up in a small pick up, slammed to a stop next to me, cracked his window open just enough to scream, "get out of here! That's Monitor! Its very bad!" then closed his window and sped off to the center of the pivot to turn it off. It had been running, and you're not supposed to spray when the irrigation is running. Then he hopped back into his pickup and sped away, leaving me standing on the hillside, with nowhere to go for shelter. The fog of pesticide swirled in around me. The crop duster sprayed on. I hunkered down and pulled all of my exposed parts and tucked my head to my chest,  inside my heavy shirt. I radio'd Ron again. He was coming as fast as he could. 

When Ron got there, we threw all the equipment into the car and drove away.
I told Ron what the farm worker had said and I asked Ron to take me to a hose so I could rinse off. He said the farm worker was probably mistaken. The crop duster wouldn't have sprayed me if it was that bad. He wouldn't pull over. It was hours before I got home to strip and shower.

That's what gets people hurt - The inability to believe that other people can be that callous and evil. The farm office manager, locally known as "Queenie" stonewalled us. She refused to give me the name of the pilot. In fact I found out that there was a farm manager with Ron when they were spraying me and Ron was told, that we were endangering the life of the pilot, because he couldn't land with a belly full of pesticide. None of that was true, but we were young and nieve.  Years later, I found out that it is a federal violation for a spray pilot to endanger any humans or livestock, but it's not enforced. I tried to get a lawyer, but none would take my case, because pesticide is involved, and this is an agricultural area...

I didn't get sick right away. I had protected my airway, by breathing inside my shirt. The symptoms that showed up were delayed. I didn't know at the time about toxins being absorbed through the skin, or ingested. The two other pathologies of toxic injuries, besides inhalation... My symptoms were classic organophosphate (OP) poisoning, but maybe only one of the 8 or so doctors that I mentioned it to, even wrote down my pesticide poisoning. None of them gave it a second thought. I ended up with diagnosis of Asthma, and eventually Fibromyalgia. It took 4 years to get that last diagnosis. By this time, as none of the pesticide poisoning had ever been addressed, I was so severely crippled by foot and leg pain, I couldn't walk without a cane. I had all the classic fibro symptoms, but that's not surprising, as they are the same as Cholingeric Toxidrome, Intermediate Syndrome, and OPIDN, all stages of organophosphate poisoning. Confused? Wondering why so many women get fibro, or OP poisoning? Who unloads half a can of pesticide on a single spider or a trail of ants in a closed house? Women. House and garden insecticides are organophosphate poisons. All those women who garden, grow veggies and roses, with pesticide dust and systemic insecticides, are using OPs and carbamates (Carbaryl - Sevin).

There was a point, during that four years that I suffered chemical pneumonitis. I was horribly sick, coughing up pieces of lung and four cups of sputum/day. I was hallucinating, and barely able to move. The neighbor to the south of us had been treating his field with Gramoxone, which contains Paraquat. A pesticide that was supposed to be banned... One of it's poisoning symptoms, pneumonitis.  I didn't know sooo much, that I was unable to protect myself. Just like so many of you, the readers.

It was also during this time that I began to experience all the side effects that were listed on the drug warning pamphlets. It started out small, but they escalated rapidly to even the most bizarre symptoms. I couldn't take my asthma Meds as they gave me brain seizures. A doctor gave me transdermal pain Meds for the over whelming muscle pain (pre fibro diagnosis) and it gave me boils and "rocks" under my skin. He'd assured me it was perfectly safe and I wouldn't get any side effects. I stopped all Meds after that, until a particularly horrible encounter, that left me with systemic, life threatening e. Choli.

But I'm getting ahead of myself. Next time, Phase 2

Monday, April 25, 2011

Incredibly Evil

I filed an informal report to my local sheriff's deputy this weekend. It's no use filing an official one. The "Sheriff's Department Administration" has refused to recognize that any crimes have been committed against me... I believe I've mentioned my evil neighbor? Well, rather than going over it again, I"ll just paste a copy of the report and let you think about it...

"...It has been a while since I last contacted you, not that the harassment has stopped, just that there's been nothing we can do about it from your end. However, there has been some escalation, and I wanted to keep you apprised.


Multiple times over the last 6-9 months, when I've gone out to potty the dogs, the yard, (along the path that I normally use to & from the dog potty area, south of the house) has smelled like someone had dumped cheap perfume all over. If I move away from that area, the fragrance (which is a known harmful substance to me) is less... I have seen wet marks on several occasions. Ron has smelled it on a few. 
The mark left in the drive

Yesterday, I was awoken from sleep with a severe pituitary headache at about 5:00 am. I had to get up and treat it, it took me almost an hour to get it down to an endurable level. I went back to bed, but was awakened again at 6:30 with a resurgence of intense pain in the same place, with radiating pain behind and beneath the right eye. These are the symptoms of a pituitary bleed. (VOCs enter the home even when it is closed up.) This pattern was repeated through out the day.

Every time I tried to go outside, yesterday, I'd become nauseous, dizzy and my eyes would burn. I did not smell anything definite. I was going out to potty the dogs, (south of the house) help Ron and weed.  I was forced to quit, when I realized the second set of symptoms were connected to going out side. Finally, in the late afternoon, I was able to take the dogs to potty, without those symptoms. When I took them to the "new" spot, north of the house, to do their "big job" (that I'd been using for the last several weeks) I encountered a strong smell of "Raid" insecticide. It had not previously been there. I backed up immediately and got Ron to see if he could smell and locate it. He could and reported that it was ONLY on our big John Deere, which was exactly were I'd been taking the dogs to do their business.  None of us has used any insecticide on or near this location. I must conclude that some one trespassed onto our property and deliberately sprayed our tractor with a known toxic substance. (I should state that, this last Wednesday I saw {Mr. Evil} and another male, watching me as I pottied the dogs in that exact same location. 

This morning, I took the dogs to potty south of the house and saw that someone had left a definite mark in the gravel, in the drive, right were I would be sure to see it. It was definitely man made, (to our knowledge) neither Ron nor I had made such a mark. I took pictures. (it wasn't there last night). It looked like this  ) l   It was cleanly made. I thought had it been an accidental mark, it wouldn't have been so cleanly made. These recent incidents made me feel as though someone wanted me to know that they are watching me, know what I do, and that they are coming on my property at night, can hurt me and there is nothing I can do about it. That person is harassing me, threatening me and assaulting me with substances that he/she knows are harmful and life threatening to me.

I only have one suspect, as only one person, that I know of, bears this much hatred for me. {Mr. Evil}. He has motive, access, knowledge and opportunity.

I have told you before, I believe he will continue to escalate, until he kills me. He has a history of violence, been incarcerated for assault (he said, "prison.") beats his wife and kids (told so by {Mrs. Evil} in 2005), he's deliberately, chemically assaulted me on more than 200 documented occasions. I'm not counting the occasions were I've been booby trapped by fragrance on my property, and now pesticide, by an "unknown" assailant.

If I see him on my property, I must assume he is there to harm me. I will attempt to take pictures, but that will only result, if he sees me, in him becoming more aggressive and violently attacking me. (That is a reasonable scenario. As my photographing him doing illegal behavior, in the past, has caused him to become aggressively angry. Driving without a license, spraying my property, etc...) I won't have time to call you. I will be forced to defend my life. That is not a position that I wish to be put in. Can't we do anything to head this off?"

This is not the first time I have filed this kind of report, nor is it the first time I've asked them to do something before he tries to kill me in a much more direct way. Lets face it, I'm so horribly vulnerable, I don't stand much of a chance...

I have written a letter to a US Senator, that has expressed sympathetic views, asking for legislation that recognizes attacks against the chemically sensitive with toxic substances, including pesticide and fragrance be recognized, specifically, as a hate crime and classified as assault, etc. No answers yet, from any party...

Friday, April 15, 2011

Sand and "Street Cred"

I injected myself for the first time this morning. It was surprisingly easy. I hardly needed any "sand" or fortitude at all. I gathered all the supplies, rested, and began opening the sterile packages... The chemicals they used to sterilize the syringes it's self was toxic and came wooshing out of the package. Got a bit of a headache from that.

When I opened the needle, I was a bit non-plussed. It was an 18 Gage and looked a bit like I'd be inserting a pencil into my vein. O.K., not literally, but I won't even use an 18 Gage on my cattle, intra-muscularly. It hurts them too much. Luckily for me Rich, my RN, had given me a 23 gage butterfly needle, with tube, so I could find the right kind. I used it.

Went right in perfectly. I'd watched 8 nurses training videos on YouTube. Well, I didn't do everything perfectly. I'd stuck the tape too far away. When I reached to get it, the needle came out. I mopped that up and reinserted a little above the first insertion site. I'd also stuck the tape to my arm this time, so I could pull it acrossed the needle with my fingers, without letting go. The rest was easy. Of course, now I have two marks... We (those of us who get regular infusions) used to joke at the Dr. Office "street cred."

I've spent the rest of the morning trying to find a supply of the right kind of needles. My compounding pharmacist doesn't carry them. I finally found one, I just need to get a Rx for the supplies. Sheesh. It shouldn't be so complicated!


Next injection will be left handed, I'll have to try taping the syringe to my arm so I'm not fumbling with it. I'll have to do left handed exercises to improve my dexterity and coordination on that side. The accuracy of the stick is going to be the hardest part. Maybe now the uphill climb, to get better, will be easier!!

Thursday, April 14, 2011

Relief

I, myself, am surprised by the tremendous amount of relief I felt when my IV glutathione perscription finally arrived. I've been living so long, 7 years, knowing that the least little, haphazard trace exposure could kill me, that I hadn't realized how stressed about it I was. I actually felt my shoulders drop!

I'm not sure I can express the enormity of the difference it makes. Having immediate access to the substance that could stop the life threatening symptoms, without having to expose myself even more, is life changing. I could say it's comparable to being lost at sea, and finally seeing the coast guard steaming t'word you, and finally knowing, "you're going to be o.k."

I haven't injected myself, yet. But knowing that it's there... huge. I finally have regained a sense of peace, and safety!

O' I know I'll still have exposures, horrible pain and disability, but "way," not as bad. This is HUGE!

Sunday, April 10, 2011

Bleeding

I'm going through endocrine system disrupting exposures again. Last year, at this time, they were so bad that I developed a tumor, a cyst which ruptured internally - drained and bled, and I was bleeding heavily for more than a week, and for a total of 18 days at a wack, every month. I was so anemic I nearly died. The beginning of spray season, you know.

Well, it is back in full swing again and there have been more than 8 spray events near me in the last week alone. Besides the toxic encephalopathy, the systemic porphyrian collapse, and the anemia due to chronic hemorrhaging, I'm fiiiiiinnnnne.

This is the frustrating part, just when I begin to recover, I get dumped back into the bottom of the pit. Oooh! This is where I lose my temper! I hate wasting my days, not being able to do anything but be miserable! I hate not being able to care for myself. I hate not being able to help. I hate the horrible pain, and I hate the terror about not knowing wether I can survive another round.

One of the things that is going on during the brain swelling (that is literally tearing apart the calcified tissue that connects the plates of my skull, and that is squishing my brain cells until they pop and are destroyed,) as well as the swelling of the internal organs that crushes both my lungs, suffocating me, and constricts my heart, is systemic apoptosys. When your body doesn't have enough glutathione, the cells literally explode inside you. The more stringent the depletion, the greater the number that explode. It's something I can feel.

I have passed out, before. From lack of oxygen, and from anemia. It doesn't feel the same. This feels like a wave of death washing over you, as though you were the beach, and just as the receding tide draws off grains of sand, so the receding wave of death is drawing away my life. The bigger the hit, the stronger the rip tide. I feel my life ebb away. It is terrifying, because I can not stop it.

The IV Glutathione stops it, but it's only been available on Tuesdays and Thursdays, and only 55 miles away. I've had way too many close calls... So, we are trying a new thing. I have a percription for IV glutathione, to inject myself. The first shipment arrives Monday. I'm hoping I can learn to inject myself, as a defense against hits. I'm praying I have the sand to do it. I told my doctor that "if addicts can do it, it can't be too hard." I believe my "need" is as great as theirs...

As for the bleeding... Last year I ate 5 cups of broccoli per day, for months(I started at 2-3, but quickly found I had to increase it). It corrected all of those conditions, until now. I'm back on broccoli. I just about get the bleeding stopped, and then, another spray call comes. I take another hit. I bleed again.

Being sick takes up too much of my time!