Sunday, October 31, 2010

A Day in the Life, part 1

Most people count their day as beginning when they wake up in the morning. It doesn't work like that for TI's.

The days run together because we very often don't sleep at night. We spend our days longing for the sweet relief of pain that sleep would bring. We spend our nights writhing in pain on beds that seem unyielding, full of glass shards, touched by hoar-frost or seared by some unseen volcanic steam vent.

Undedected exposures surface like gouls and boogeymen from under the bed, to rend us from our rare moments of hard-won unconsciousness. They pounce upon are prostrate bodies and sink their claws deep within our flesh and brains. Suddenly, and with violence, we are forced back into the reality of our railing flesh. Our throbbing, injured, sleep-deprived minds struggle to make sense of the cacophony of sensations that impale us. Which body part is screaming loudest?

Those, lucky enough to have survived for any length of time develop the ability to "sleep" (I say  that tongue in cheek. It is not restful sleep. It's rarely even REM sleep. It is unconsciousness.) through all but the most indescribable  pain. They wake to heart attack, toxic encephalopathy- both brain and organ, or respiratory distress. They wake to inexpressible interstitial cystitis - feels like glass shards shredding your bladder. Many TI's experience this all night long. Thankfully not me, most nights.

When the demons strike and I'm thrust into awareness by chest and back pain so intense I cannot breathe, I stumble from the bed and claw my way to the kitchen in desperate search of relief. Pain like this, I've come to relate to toxin induced intermittent porphyria. It is life threatening. If unchecked, it stops the heart by compression. The pain feels as though my ribcage is being ripped apart by the inflatable jaws of life that EMTs use to uncompress a car. Or more graphically, as though being torn apart by elephants; Some unseen hand is repeatedly stabbing me with an ice-pick, in my sternum and spine and leveraging them apart.

Foam erupts from my stomach. If I had less control, I would be foaming at the mouth. I spit this out, into every sink or can that I pass en route. I'm stumbling through the dark because the light hurts my eyes. Even the dim lights that exist through out the house, from various appliances. They cast their macabre luminescence on my well worn path, and I am squinting from the pain they invoke.  I'm staggering like a drunken fool, ricocheting of walls and furniture. This is ataxia, another gift of toxic exposure. I've experienced it enough, I execute what I  'humorously' call "controlled ataxia." This erratic flight is punctuated by the aforementioned detours to dispel the foam.

The foam is caused by incomplete porphyrin rings dumping into my stomach. They are toxic in their in-completed state. They are incomplete because I used up my glutathione, due to toxic exposure. My own vicious circle. The toxins created by the in-completed rings cause all the other internal organs to swell. I know all this; its stored away in my brain. It's this critical knowledge that drives me to the kitchen and is the rationale for my destination. The pain is screaming, screaming! I can hardly think, I can barely stand. My legs feel as though they are turning in to the clothe legs of a ragdoll.

I arrive at the kitchen, I must collect all the necessary ingredients and equipment for the cure. ~ Some of you must be wondering why I didn't wake my husband and get him to do this for me. I realize that unless you've experience something similar to this, it must be difficult to understand. Number one, this happens so often, one of us needs to get their sleep. One of us must continue to function or everything, and I mean everything will come apart. The other equally important aspect of this is that waiting for the cure takes indescribably longer than doing it myself. While physically there is no difference in the time, psychologically its huge. If I am doing something, it helps me to survive the pain.

Still staggering and by this time moaning, with tears steaming down my face I collect everything I need. This is the cure that I developed through research, trial  and Ron's brilliant insight. I'm making, of all things, eggnog, in the middle of the night.

You see, hospitals treat this condition with IV glucose. Unfortunately, the exposures I'd get from an EMT and hospital experience, in this state of glutathione deprivation,  would be too much and kill me. And IV Glucose itself contains preservatives, i.e. toxins. Research tells me that glucose is sugar. Trial has shown me that oral sugars alone aren't enough to squelch a massive attack. They will work on minor attacks, and it only necessitates a teaspoon of honey, maple syrup of molases. I've tried sugars and fat, like milk or live cream cheese - probiotics. These work for mid-range attacks. It's not enough for the massive attack that catches you unaware. During one of these experiences I asked my husband, "Ron, what breaks up foam?" And his reply, from years of meringue pie making was "Egg yolk. If you get any yolk in your whites they won't whip." Hence, eggnog.

So there I am, gathering sugar, milk and eggs; moaning and swaying like a banshee, arms jerking, knees and hips buckling. I fumble for the pan, a spoon a small bowl, a cup. They clatter on the counter from my unresponsive fingers. It takes every last ounce of concentration that I can muster, past the pain, to crack the eggs and slip the yolks. Many times the white, intended for the bowl, splays itself, in all defiance across the counter and trails over the burner. I persevere and collect a number of the priceless orbs within the pan. With the precision of a drunken sot, I sling raw sugar at my target. Unbelievably, I'm working as fast as I can, an eternity... cream or half-n-half are slopped together with the rest. In explicably  my perverse sense of humor injects an image of  "the swedish chef" into my consciousness. Good grief! there's a mess; I'm now stirring like a fiend. Egg white & sugar smoke is billowing and with one hand I turn on the fan. All the while continuing my grotesque dance of pain and unearthly song of sorrow, there, in the eerily lit kitchen, in the recesses of the night.

I'm supposed to cook it until a ring of foam forms around the edge of the pan. Like hell. I can't wait that long. And who cares about salmanella or ecoli at this point. I' sip teaspoons full of the precious liquid, easing in relief. Finally, (and it does work better when it's cooked) I pour a cup, add a little milk to cool and chug it. Gone are the days when I drank real eggnog, for fun. I collect my pan, a hot pad & my cup and retire to the table. I park myself and rock in pain and drink eggnog until the pain diminishes. Sometimes, I will stumble to a more comfortable chair and attempt to rest between doses as I wait for the relief. This is when the level of pain, while less dramatic, is not sufficient to indicate the episode is over. There's no point is going all the way back up stairs or disturbing Ron, if I'm just going to have to do it all again. Many times, Ron comes down on these nights, to check on me. I can only imagine the worry that this gives him.

Finally, when I get enough relief, I check to make sure I've turned off the stove and pause long enough to bring a small amount of order to my blitzed kitchen. If morning hasn't caught me out, I crawl spent, back to bed, hoping that the worst is over. I will myself back to unconsciousness.

When morning finally comes I stagger from my accursed resting place. I cannot sleep in the day light. It beats upon my eye lids and skin like physical blows. I have to get up. I know, it's not fair, to take out the grief and pain on others. I psych myself up every morning to "put on that happy face," to greet those I have the privilege of sharing space with, with a smile or a pleasant greeting. I can't always manage it. I try.

Next time, part 2, Let the protocols begin!

Saturday, October 30, 2010

The 2nd Hurdle

It costs $10,000 - $30,000 to train a Service Dog. That's a big hurdle. That doesn't include the dog, itself. The dogs I'm looking at cost $1000.  So I negotiated with the trainer. Part of her fee is the care and maintenance. I can do that. She normally trains for people with severe impairment and she was open to me raising and obedience training the puppy. Normally you get one a year or so after you buy one and it's gone through training.

Now, there are a number of sites that train dogs and place them for free. They have long waiting lists and practice a kind of placement triage. I doubt I'd rank very high when compared to a woman with 2 autistic children, who's husband left her and she's raising them on her own. Autism Spectrum Disorders range from mild to severe. Epileptic/seizure sufferers and vets are also high propriety. Then there's the mobility impairment, the blind and the deaf. I'd have a tuff time convincing anyone that my disability is real and deserves a dog when assessed next to the other worthy clients. There are also grants, but they have the same waiting list.

So I talked to my perspective trainer. She will work with me on an hourly basis and guide my service dog training, do the toxic scent work and take the dog on field trips. She estimates it should cost me $5000. When I compare it to what it would cost if someone else did all the training, that's a real deal. Besides, she's even willing to wash the dog, (yard rinse) when she brings it back. Good thing it will be a poodle ~they love the water! Living with me, it will get a lot of baths.

I would never have thought I would spend $6000 + for a dog. I can probably get a prescription from Dr. Smith. That way at least it will be tax deductible. Kinda gives me a stomach ache just thinking about it. Of course, thinking about the sudden, life threatening crashes I've been through this last season... well that's worse.

So, I'm going to think about the positive aspects. It will be cute! Somehow or other I'm supposed to be able to add pictures to this. I'm giving this a try. We'll see how this works. Hold your breath!  Whoa!  Cool! This is Promise Land Poodles', Zoey. This is exactly what the poodle I use to dream about looked like. Isn't she great?

Seriously though, It would be huge to have a poodle/barometer that alerted me before I hit the bottom, and that alerted me to exposures...

Then there is the resurrection of a impish idea I once had... "The Professors" as I like to call them, come every fall for the opening weekend of pheasant season. They bring their big tough German Short-haired Pointers. Powerful, freight trains of hunting. I always thought it would be great fun to have a hunting poodle. Put pink ribbons on it's ears and give it a pink camo hunting vest and take it out to hunt circles around those pointers. LOL  Don't get me wrong, the professors have in their history of favorite hunting dogs, an adorable cocker spaniel or two. And we had the honor of inheriting B.G. when George passed. We loved Beege, but he was all German Short-haired Pointer: Big runner, and a freight train. But it would be worth the giggle to see the look on Ted's face and hear him say, "Well!..." in particular way of his. They're such good sports!

Think about this with me. Post your  opinion. I'd like to hear it. :^)

Friday, October 29, 2010

Service Dogs for the Chemically Sensitive

This is an interesting thought. One that came to me in the middle of the night. In fact, it came to me after a horrifying and sudden life threatening episode that left me shaking, crying and terrified...

That particular evening I was sprawled in my favorite chair. Through with the day. Nothing else that I had to do, just counting time 'till I could retire. It just so happened that Ron had a boat drape that needed mending. The drape itself was several years old. It was vinyl and polyester. All those years should be more than enough time to outgas a drape, or so we thought. In fact, he'd had it in the living room last year, mending the seam next to the zipper. Last year it wasn't a major problem.

I didn't think it was a problem this year, until about the time he finished the mend. I suddenly realized that my throat felt like it had been worked over with a cheese grater. Ron took the drape out at that time, so when I got up to go to bed, I dosed up on extra meds (nutraceuticals) and figured I'd be up in the night with a sore throat and a headache. I staggered off to bed with that weighted down feeling that TIs get at the onset of exposure. (the one that feels like your coming down with the flu.)

Before I could crawl into bed I showered, (to remove VOCs from my skin, so they wouldn't continue to absorb, or to volatize off me and I'd continue to inhale them)  then sauna-ed, to sweat out any that had absorbed, and showered again to remove the sweated out toxins. By the time I managed to flop into the bed, Ron was already fast asleep. I felt pretty good at that point. I figured I'd gotten the better of that exposure. Maybe I'd finally worked out an effective response. ~That's the elusive rainbow that we chase.~

I remember I was dreaming. It wasn't an alarming dream. In the dream, I had just received an email. Then that was it. Instantly I was awake and struggling to rise up. My throat had snapped shut, like it was glued closed. I couldn't draw a breath. It felt the same way it feels when someone sneaks up behind you when you're snorkeling and puts their thumb over the top of your snorkel. I couldn't draw in. I couldn't make any sound. Ron was sleeping away next to me, and I couldn't call out.

So I started to hit him, pounding on his shoulder. He didn't wake up. He just moaned a little in his sleep so I whaled on him again. It wasn't 'till the third round that he roused enough to talk to me. But I still couldn't talk. I was over there, in the dark, going, "hck, hck, hck," thrashing around, trying to make choking signs. This wasn't really bright. I mean, it's pitch dark in our room. But what can I say. One doesn't think clearly when one is suffocating. Some how, or maybe no how, during all that thrashing a little air was pushed out. My airway became unglued and I could draw in a labored, wheezing breath. My windpipe felt like brittle paper. It actually crackled. Ron went down and got me a glass of water. What else could we do. I'll be honest, I cried in terror for about half an hour. I could barely breathe for an hour. Neither of us was sleeping. We were both worried it would happen again. Sometime near morning I finally drifted off to sleep.

Lying there in the dark, and not knowing if your next breath is going to be your last, going to sleep is an act of faith. Faith doesn't come easy. It's one thing to say you have faith, when you live a "safe" life. It's another thing entirely to test your face in the teeth of adversity. "Now I lay me down to sleep. I pray the Lord my soul to keep..." There's a lot more meaning to that when there is a very real possibility that you could be standing in front of HIM, in the space of just a few seconds.

And at the same time, I can't settle. I can't help it. My mind churns while I'm lying there, trying to gather the tattered shreds of my courage and summon enough faith from the depths of my soul, to try to sleep. I think about all the things I still want to do. The things I don't want to miss... I try to think myself out of my problems. Sometimes there's no solution. This one time I had an intriguing thought.

I had recently seen a PBS special on service dogs that alerted people of impending seizures. They also trained dogs, to detect allergen's for kids that had severe reactions. (Dr. Smith says I had anaphylactic shock) Too bad they didn't have Dogs for the Toxically Injured, that alert to the presence of toxins so we could avoid them, or like the seizure dogs, when a persons was crashing. Ryan's dog Jesse, gets real clingy when I "go down." If I had a service dog, sleeping next to me, he could wake me up before the nasty crash and I could take more meds, to prevent the worst of the symptoms.  Maybe they have 'em. The service dogs, I mean. It was on that note that I finally went off to sleep.

It was also an idea that wouldn't leave me alone, when I woke the next day. No, my symptoms weren't just gone. (It felt like I had a stone on my chest. My windpipe felt raw. All the cliche terms of lethargy applied.) But while I drug myself around, getting up, doing protocols, taking care of chores, the idea kept niggling. I brought it up to Ron, and he actually thought that it wasn't a bad idea. So I went on the web and rooted around.

It took me three days to find a trainer, but they weren't in my area, that could train dogs for chemical sensitivity.  Then on Dr. day, I stopped at the fragrance free pet store and the cashier gave me a card for a local trainer. She's actually certified in all kinds of dog training. That was one hurdle. Then I cold called her and began the negotiations involved in introducing a normal person to the idea of my disability and working with me. She didn't run away, and she didn't seem too intimidated.

She told me she like to work with "good clay.' And gave me the names of a couple of breeder's websites. Now here's the amazing part. The breed she prefers to work with for service dogs are hunting poodles.  This is amazing because it was one of the dreams I'd had to let go of when I became disabled. I'd always wanted a standard poodle. When I discovered they had hunting poodles, I was hooked. Then I became disabled...  Now, full circle. Maybe I'm going to get a hunting poodle.

On that note, I'm going to bed. Obviously I've had an exposure today. I looked back over my earlier blog and not only did I have some atrocious spelling errors, but I sounded really witchy. All pretty good indications of toxic exposures. That and it's 11:30 p.m. and I'm still wound.

Sorry about the witchy part guys. But from time to time, you are going to see the anger, beneath the resignation.... Good night.

"Just a Little" ~ an Act of War


Well, this is obviously a hot topic. Hot under the collar that is. This action (when deliberate) and statement is guaranteed to make TIs become enflamed... 

1.) We are going to suffer horrendous damage from someone's "just a little" bit of fragrance/toxic product use. It's gonna hurt like H. E. 2(toothpicks) ~ {that's algebra. See your teacher was right, you need algebra in the real world... O.K. in my world.}

About this time guilty-feeling-Normals are saying, "I wore a little when I was visiting _____, and nothin' happened."  WELL, can I get a witness, TIs? 

Our downward spiral begins with symptoms other people can't see. First, we smell it. It burns our noses and throats. Then we begin to feel as though we're getting the flu. We get feverish, and all our joints begin to swell and hurt. Our lymphs also begin to swell and hurt. We're not talking mild hurt. We're talking screaming, flaming hurt. Notice I"m saying "begin to." This  is just the beginning. It's going to get a whole lot worse! In fact the peak symptoms will manifest anywhere from 20 -48 hrs. from exposure. The journey to and from is nasty! The peak, is bloody hell And it lasts for Hour to Days. Recovery, from just that "little bit" take weeks to months.

For many, respirtory distress begins immediately, and continues to escalate. The other nasty symptom we'll get, that you can't see, includes migraine, cardiac, brain, intestinal, liver and kidney damage. In other words, its as though the stinky person is beating our insides with a baseball bat.

Fragrant (and I mean smelly) Normals are not seeing anything because, TIs understand that society doesn't recognize the fact that we've just been assaulted by a known lethal weapon. So while we yet retain control, we refrain from clocking you one. 
              "It was self defense, officer, I swear!" 

After all, we already get enough unjustified accusations of mental illness. The mainstream traditional medical establishment is just now recognizing the research that proves our condition is physiological rather than a mental illness. Do we get brain damage from exposure. O' yeah! So we contain our selves. (Sooner or later though, you will get "flamed." And , all of you inconsiderate Normals (different than uneducated Normals) will deserve it.

O.K. lets define the difference between, inconsiderate/indifferent and uneducated normals... TIs have compassion on those that don't understand the condition. We recognize that there is very little public knowledge about us. A lot of times we'll just suck it up.

On the other hand, there are those who, after being told exactly what we need as accommodation and what will happen to us, figure that they have a "right," to wear their usual product and that it will be fine if they wear less. They think we'll never know. They can't smell it, so obviously we won't be able to either...  (see previous post, paragraph containing references to "pig poo.")  Then their are those who, in defiance, literally bathe in their fragranced products! In the majority of cases these persons have been "medical professionals, family members and public servants." Unbelievable. 

I have personally been told by a imaging technician that she, "had a right to wear her fragranced products." She bragged that she had bathed in them and there was nothing I could do about it." This was after I had made extensive arrangements for accommodation with her supervisors. She was so rank that her malodorous fumes burnt my husband's (a Normal) nostrils, as well as mine, and we were 30 ft. from her... As a public servant, that's a federal violation of the ADA and a hate crime.  In fact, it is a violation for any person, including individuals to prevent access to any disable person on the basis of their disability.  So for TIs to be prevented from participating or going anywhere, due to someone elses fragrance/chemical use is literally against the law. Think about it.

I know a number of TIs that have sucked up some of the most tragic accidental exposures and never let on to the person (inadvertently) harming them. It's part of our way of life. Because we are so isolated, we value interpersonal interactions. We care about people. If they haven't been educated, we chose to educate, rather than become angry. I have found that the majority of people, once they understand the depth of the damage that VOCs can have on the toxically injured, feel terrible remorse, and make considerable effort, such that it never happens again. That is the Biblical definition of repentence and mandates forgiveness. Which by the way, we are only too happy to give! Its not the accidental ones that enflame us. Its the deliberate ones.

Unfortunately, there is very little awareness out there. Education is one or two people at a time. As it now stands we are literally, second class citizens in the eyes of most of the public. If you've never been disabled or a member of a minority, it is nearly impossible to imagine the contempt that these groups of people routinely face. 

I've actually had people walk up to me, in a grocery store and scream the most hateful, vile things into my face, pinning me against the display, so that I was unable to move away from their fragrance. I once had a man in the check out line holler out that, "someone need(ed) to call the men with the white coats and butterfly nets to come get (me) because people like (me) shouldn't be allowed out in public."  I've had people walk up to me and say insulting things about me to each other, like I'm a cur in the gutter. I didn't know bigotry like that really existed prior to this disability...

I recently came across a blog from a woman who was training service dogs for the mobility impaired. She herself was not impaired. She took the dog to a grocery store and used a motorized cart, to accustom the dog to that kind of behavior/environment. She got to the checkout stand and realized she had forgotten something. So she went back to get it without the dog, still in the scooter. She was appalled at just that little bit of discrimination that she was subject to; even though she was reassured by the amount of acceptance she encountered when the dog was with her. Hmmm....

Next post: "Service Dogs for the Chemically Sensitive"

Thursday, October 28, 2010

Two Types of Readers

I figure I'll have two types of readers, the toxically injured (TIs) and the "normals."  I'll undoubtedly piss off both.

As TIs, we have so much toxic exposure that all of us, from time to time, (some more than others) go ape-crap crazy and get honked off over something we a.) don't agree with, or b.) misunderstood in the first place, as we're suffering cognitive impairment and some degree of diminished visual acuity.

For you "normals" checking in, a toxic exposure is relatively like somebody else forcing an overdose of meth on us. We experience: confusion, agitation and rage, among our many other physical symptoms and organ damages. It's systemic, so that's just the beginning.

I'll upset the normals because, by in large, a person can only understand that which they can perceive. I'll be talking about reactions to things that normals don't perceive. They don't smell them, they don't feel them. For that reason, many of them think we are flipping crazy. Kudo's, though, to those normals, kind enough to empathise and take our claims (without personal experience) on faith.

That brings up the question as to why we can perceive them and they can't...  It's a secondary survival mechanism.  We, by virtue of repetitive toxic exposure, plus some degree of genetic damage, either inherited or from exposures in our lifetime, become "detoxer enzyme deficient!" O.K. I just made that name up. What we and all those with chronic diseases are deficient in is the tri-peptide (enzyme precursor), Glutathione.  There are two others, but research right now has focused on glutathione, as it's the main one.

When your body uses up or (heaven forfend) can't produce enough glutathione, all sorts of systems fail and bio-functions run amuck. The process that is left to our immune systems for combating toxins is - encase them in fat and store them in adipose tissue.       Think about the epidemic of obesity...

Meanwhile, the immune system revs up its proactive systems and is in effect, "hypersensitive." RED ALERT MR. SPOCK, RED ALERT!!

The bad news for normals is, until their primary system of immune defense fails, they will be like pig farmers. Pig farmers, become immune to the smell of pig feces. While they can smell other stinky things, they can't smell pig poo. Normals can't smell the chemical dense environment they live in.

First Piss-off Alert: Fragrance, to TIs, is and will be referred to in this blog as "stink, stench, smelly, reek, etc..." Because to us it smells like cat pee mixed with the "ubiquitous powdered fruit-flavored drink mix." The stench of which is always accompanied by horrible life-threatening symptoms.

Which segues nicely to next times blog...."I just used a little" an act of war.

My sister Kathleen inspired me to begin this blog

She's living her dream adventure - riding across America on horseback. She's risked everything, and kept back nothing. How cool is that? One of the things I've learned is that an adventure is when you experience events, things get wild and crazy and you survive. A tragedy is when you don't. She's having a tremendous adventure and enjoying every minute of it, even the bad parts...

So, I'm beginning this blog about a different kind of adventure. I've survived 7 years of severe, chronic toxic injury where minute by minute there can be life threatening exposures.  I've experienced unimaginable discrimination, in a country known for it's "Civil Rights." I, like the 140 million Americans that suffer with the same disability, struggle everyday to get over the obstacles, to complete the simplest tasks and step through an unending medical protocol. 

I'm blessed enough to have incredible family, friends and internet community friends that support me. I'm dedicating this blog to all those with Toxic Injuries ~ the fastest growing segment of the disabled population ADA Region 10.