Saturday, July 23, 2011

Playing Penolope, inadvertently

In Homer’s Odyssey, Penelope stays home waiting while her husband Odysseus travels from one adventure to another.  Because there is no word from him for two decades, everyone assumes he is dead and she is pressured to remarry.  She agrees to do so when she finishes the weaving in which she is engaged every day. But each night she unravels all that she wove during the day. 

Penelope’s deception is deliberate.  Mine is inadvertent.  I make gains through diligent activities only to get another exposure to some mystery toxin that unravels the benefits of the activities.  If there is deception, it is self-deception.  For since March I have been promising myself: “This is the last time I’m going to let myself get exposed.”  And then, invariably, I say to myself, “This doesn’t look like a problem.”  Or “I’ll be safe outside in the fresh air,” before getting a whiff of something and knowing, instantly, that it was too late.  Then I would walk away, get my respirator, or call in my husband.  And for the next 2-3 days, I’d go through the stages of an immune inflammatory reaction.

Eventually, I was able to identify several types of reactions.  The sub-micron particles from books and papers that had been dusted went right to my brain and caused insomnia, restlessness, a non-stop mind, elevated stress hormones (perhaps as a consequence of not sleeping), increased appetite, and the cascade of being wired and tired.  When David moved large pieces of furniture and revealed visible dust, I’d feel grit in my mouth, get congestion and sneezing and sinus pain. 

As the process of going through all my belongings dragged on (and this was not helped by the 2-3 day periods of recuperation from exposures), I finally wised up.   On July 5 I went out and purchased a tent.
See the picture of Big Agnes House 4 at
Big Agnes advertises “All seams taped with waterproof, solvent-free polyurethane (No PVC or VOC's) tape.” 

We were fortunate to get the tent on sale at a local store where we could set it up and I could smell it.  The waterproofed fly smelled a bit.  We set up the tent and aired it out for hours, then slept in it with the fly rolled up on the sides, and aired it out more the next day.  By the 3rd night, when the weather turned rainy, there was no detectable odor from the fly, even with it snapped snuggly down.

At this point, I started sleeping through the night, but still was inconsistent in using my respirator in the house as we pushed ahead for the big day—the complete emptying of the house with everything stored in a sealed off living room so that we could fog the space with Aerosolver™.  During this push I amazed myself in the consistency of my energy and stamina.  I worked for 3-4 hours, rested, and worked again.  I barely experienced PEM (post-exertional malaise) which told me that I was, indeed, recovering a strong body under the veils of CIRS reactions to inhaled toxins like mold, bacteria, and latex rubber proteins. 

The increased wellbeing from the Trivedi retreat (which I reported on June 30) disappeared the next day as I inhaled whatever submicron particles had escaped the HEPA filtration and vacuuming from the HVAC duct and furnace AC cleaning during my absence.  It was one of those “Oh shit!” reactions whacking me over the head with its intensity.  But I didn’t lose all my gains.  I recovered from the near-sleepless night more quickly than I did in the past.  Instead of spending 2-3 days in the bed, I took it easy for the next 2 days by avoiding activities requiring walking and standing and instead focusing on the few sedentary projects I had left. 

Most of us forget about the sub-micron particles.  But according to various experts on the sickbuildings yahoo list, such as toxicologist Jack Thrasher, these tiny fragments go right into the brain and contribute to brain inflammation with a host of cognitive and physical symptoms.  Don’t just think mold when you think of a water-damaged building – although this is what gets all the press these days.  Thrasher’s list of what you will find in there includes nine categories of trouble:
1) Indicator molds;2) Gram negative and positive bacteria;3) Microbial particulates;4) Mycotoxins;5) Volatile organic compounds, both microbial (MVOCs) and nonmicrobial (VOCs);6) Proteins;7) Galactomannans;8) 1-3-beta-D- glucans (glucans);
9) Lipopolysaccharides (LPS – endotoxins).  
Now follow the link on his website to Brain Function and Inflammation where you can read about the process of inflammation (which aligns nicely with the biomarkers Shoemaker identified for CIRS) and you can also follow the link to his paper on fine particles.

Without these researchers wonderful contributions, I would probably have judged myself as crazy, hypochondriac, or hopelessly reactive.  Now I know my body is just doing what it is designed to do within the disease parameters of CIRS -- it is trying to rid my body of these toxins by increasing inflammatory cytokines and chemokines.  Take away these 9 contaminants from my living space, and I’ll feel much better.

And my life in the tent has been great!  Other than the nuisance of having to walk on the wet grass at night to use the toilet, I’m loving the quietude, the sounds of owls and crickets and little mammals stepping on dry twigs.  The cool breezes blow through the screening on all four sides, the moonlight shines in, and a skylight gives me a glimpse of the starry firmament above.

Aerosolver™ was supposed to be the day of Odysseus’ return, the day Penelope stops unraveling her weaving, the day I’d finally be able to walk through my house fearlessly inhaling deeply. 

Friday was that day.  But alas, it was Friday two weeks ago, Friday July 8.  And I am still living in the tent and entering the house with a respirator.

Maybe Aerosolver did ‘solve’ my ‘air’ problems in terms of eliminating the fine particles that become airborne when dust, mold, bacteria, etc are disturbed. But it added its own set of complications.  And the tent, while still beautiful and roomy, now resides in Mug City amidst a severe heatwave and severe thunderstorms--all of which make it much less peaceful, and which delayed the posting of this blog for nearly two weeks.

First, a bit more about Aerosolver .  The inventor of the product is IAQ expert Greg Weatherman, author of one of the most comprehensive chapters in Shoemaker’s Surviving Mold, a respected professional who has worked with many of Shoemaker’s most sensitive patients.  Weatherman designed the product to capture the fine particles that escape HEPA filters and which swirl around on currents of air, rarely settling onto surfaces like floors and desktops, therefore constantly subjecting sensitive people to their toxicity.  The active ingredients in the product, when mixed with water and correctly dispersed with a fogger, capture the floating particles and cause them to drop to the floor.  They are then cleaned up with wet towels or Swiffer™ clothes. 

Simple, brilliant, and tested to be effective.

Greg makes a special formula for customers with MCS which is free of fragrance and phenols for which we had to wait quite a long time.  For the Aerosolver™ adversely affected me when I entered the house with a clean respirator strapped tightly around my head, hands covered with rubber gloves.  I smelled an unpleasant fragrance which soon caused me to develop a headache.  Nevertheless, I was energetic and enthusiastic.   I worked hard cleaning – probably harder than I’ve worked in 11 years – for 3-4 hours.  But by afternoon, my left temple was throbbing, my left eye ached, I felt dehydrated, and I had that most devastating ME symptom come up:  I could not stand.

I figured the dehydration had much to do with the heat and the fact that I didn’t drink much water because it’s hard to drink wearing a face mask.  But when I told Weatherman about my reactions, he said the glycerol in the product has vasodilating effects (it is used to counteract hypertension and vasoconstriction) and also dehydrating effects. He told me to drink a lot of water.  Unfortunately, with ADH almost non-existent (the hormone that controls water balance), I’m perpetually dehydrated, and like dry soil on which water runs off without soaking in, drinking lots of water only sends me running to the toilet more often, without seeming to correct the dehydrated condition.  I have to get water in through skin, bowels, and even I.V. before I feel a shift.  And so I’ve been hydrating as much as I can, yet losing or barely keeping up with the natural moisture loss from sweating in this severe heat.

David also got a terrible headache from the Aerosolver, and because it smelled a bit like a Laundromat and like the thrift shop full of newly washed clothes, I sniffed the remaining gallon of unused product and identified the scent as the one in the house. 

Glycerine is colorless and odorless, which means that some kind of fragrance might have been added to the product.  This is something I still have not gotten clarification about because the supplier/inventor (Weatherman) believes I’m reacting to the phenol residue in the rented fogger.  Could be.   But it’s not the whole problem, or the smell in the clean bottle of Aerosolver would not be identical to the smell in the house, and the residue David wiped off the fogger would not smell radically different (acrid rather than sweet).

Ten days later, when the house had stopped smelling for several days, and when I seemed to be tolerating it without a respirator for short periods of time, I put the respirator ‘on vacation’ to enjoy living in my very clean house like a normal person.

I didn’t have a dramatic reaction, just a subtle, insidious slide downhill into aching legs and feet, fatigue, inability to stand, and grouchiness.  Attempting to sleep inside on the 3rd night was a disaster, although I did log in 4 hours starting after 4 am. 

The Trivedi blessings helped me to become aware of the way the house was and still is affecting me.  By the end of the 4th day, I noticed that inside the house I was grumpy, angry, negative, and stressed, felt let down, that I’d done all this work and was worse off than I’d been earlier!   This is not a good state of mind in which to make decisions especially in an illness with fluctuating symptoms. 

So I did another experiment.  I spent 2-3 hours outdoors and my cheerful optimism returned.  I spent 90 minutes indoors and transformed into a curmudgeon.  I took the Tuesday night Trivedi blessing call in my tent, heard Trivedi talking about how this energy increases our awareness and connects us with our inner GPS, and immediately knew the house was still a problem.  The next day I tested this intuition by staying outside as much as I could and wearing a respirator for everything inside.  No sore feet and legs, no grumpy mood, no negative thinking.  And for the next 3 days, even with temperatures in the high 90’s, making it totally unpleasant outside, I’m doing much better as long as I stay out of the house.  I run in with my respirator, take it off to remove my contact lens and put it right back on, prepare food without enjoying the scent of garlic and olive oil simmering, and carry the food outside on trays to a table in the yard.  It’s a chore, but it keeps me from getting achy feet and grumpy mood. 

So what’s the next step?  Will the residue from the Aerosolver dissipate over time?  I’m hoping it will.  Weatherman also thinks it will.  In about a week, we’ll be packing up David’s pickup truck and driving out West to Colorado and Northern New Mexico.  I hope to make it to the desert for a while, following Lisa and Eric’s advice on “extreme mold avoidance”, but also identify a place to relocate, something with lower humidity than Gambier and therefore fewer WDB’s.  David’s requirement is a place where he can garden.  It’s a tough assignment to find both in the same locale. 

When we return in September, we’ll know whether or not I can tolerate the house long enough to stay here while we look for a buyer. 

Meanwhile, with the clean, dust-free air, I’ve become increasingly sensitive to smells, both adverse and toxic.  At the meditation center I’ve been attending since 1996, the mold smell in the rest room was so intense I nearly gagged, and the incense smell assaulted my nostrils until I moved out into the hallway.   I smell mold in the libraries and in places I’ve never smelled it before.  I wonder if the increased sensitivity is due to unmasking (the process through which underlying layers come to the surface), or whether my system has gotten more reactive from the 4 months of exposures nearly every week.  Retesting some of the biomarkers for CIRS that tend to rise shortly after exposures might indicate this.  The good thing is that, when I keep away from indoor air, my body is stronger.  I’m not getting cold like I used to get, not coming down with respiratory infections nor with swollen glands.  I am standing much longer and able to do activities for 3 to 4 hour stretches of time as long as I alternate sitting and standing.  One day last week I did 4 loads of laundry – surely a record –worked on the computer for a few hours, made dinner and cleaned up the kitchen.

Whatever happens with the house, I feel amazingly calm and optimistic.  If I can’t tolerate the house when we return from Colorado, I’ll gather a few belongings and drive West again.  And if I can do well in the house, I’ll return to my pre-Aerosolver days of sorting through my belongings, scanning papers onto the computer, and resuming the delightful activities of writing, blogging, and staying in touch with the friends I’ve ignored through the many challenges of the past year.