Posted by: eaubeauhorn | December 12, 2012

The year in brief

Before I debrief the year, a short but sweet experience in the car a few days ago. I was sitting at a stop light, window down as usual, looking around, and to my left was a pickup truck with a fellow about my age driving, sitting there in his cowboy hat. On the passenger side was a dog, doing what I was doing, sort of hanging out the window and looking around. I saw his consciousness….don’t know how to say it; I’d say I saw / felt his “personhood” except it was “doghood.” He felt me feeling him and turned to look at me. It was cool. I want more and more to spend time with animals and hope I find a way to do that. I’m not usually a “dog person” but more of a cat person, but the occasional dog, the laid back ones who aren’t being nuts all the time, I like a lot. It’s fairly rare I run into one, but when I do, it’s a great contact.

Ok, back to the year. We have prediction of actual rain a couple days from now, significant rain, windy, etc, our version of a winter storm. We don’t have blizzards here but we do get some rain storms in the winter. A year ago I was unknowingly approaching the end of my stay in the prison camp (I call it that because the people who have lived there perceive it that way.) Prison camp in that we are technically free to leave the horrid conditions we are living under, but prisoners because we would have already left had we been able to find a different place to live that did not make us sick.

While I was living there I developed sciatica that was so bad that when I tried to stand up in the morning I would start to pass out, feel like I was going to throw up, and my bowels would try to move “now.” Some days it took me half an hour to be able to stand up. Once up, I couldn’t sit down; trying to use the toilet was nearly impossible. Over a period of several weeks I managed to “walk it out” and gradually return to being able to stand up and walk again.

We had the first of two significant, wind-driven-rain storms; I love storms, even don’t really mind being out in them. Then we had a second storm, and shortly after that I started getting symptoms of mold exposure again. I went after all treatment I could find while I was looking for the source, but treatment never keeps up with exposure, only slightly mitigating the effects at a cost of hundreds of dollars per week. Then I found the source….the door on the windward side was not sealed well, water had come in around it and soaked the interior of the wall, and the wood baseboard was growing mold on the inside.

The response of my jailer, known henceforth as Devil Woman, or DW, was to first come in and rip out by hand the baseboard, thereby scattering mold spores everywhere, and then to come to a halt realizing she should not have done that. She “kindly” offered to let me sleep in the back of her pickup truck, with temperatures in the 20’s, until she decided what to do. She did not want to pay for professional remediation, and so she spent a couple of weeks doing nothing. Finally she agreed to professionally remediate if I paid for it. I’m not sure how many weeks I spent sleeping in the bed of the pickup truck but it might have been three or four. I still didn’t have access to a bathroom during the night but I was accustomed to that from living there the last several months. You learn to not drink water for several hours before you go to bed, and you learn to hold your bowels until the DW wakes up.

So I paid $2000 and the remediation was done but I was still unable to live in that building. So much for that.

Now it is January, the start of 2012. I ask people who are known to be mold sensitive, and who live in a conventional house, to help me find a house to buy that doesn’t have mold. Not only do they agree to do that, after a couple of meetings and some discussion, but they offer to let me live at their house while I am looking. They have experience with DW and regularly try to rescue people who have been trapped by her. So I move to a temporary location on their back porch, while I and my belongings are being decontaminated well enough to move into the house. In a few days, I do move in, with my own room (!) and bathroom (!!!!!) After the second night I sleep in the room, though, I don’t feel so good and decide I’d better move back out onto the porch.

There were good things about the porch; it was on the east side of the house, right next to a wildlife corridor. I’d wake up when the raven family started talking to each other just before dawn; there were raven-waking-up-noises that I heard, followed shortly by the sound of wings cutting air as, one by one, the four of them flew north up the corridor to wherever they spent the day. I also saw a bobcat, a great horned owl, and had a flock of little talkative birds that congregated in a nearby bush during the day. I heard coyotes but not as much as I would have expected; the main thing I remember hearing is the ravens. The air smelled good and I got used to the large temperature change during the night, something you never think about if you are used to living in a building with heating and cooling.

I looked at houses, I tested houses for mold, no house was suitable for the two months I looked. Nothing. Even the newer ones had high mold counts and I concluded that the building materials must have been moldy. They were about to kick me off their porch when I bought an all-aluminum camping trailer; my brothers brought it down to my property in March and we set it up.

During the time I was testing, I tested their house. It also tested with a high mold count even though it did not make *them* sick. It turns out that it had the same species of mold in it that my own home has, the kind that made me so incredibly ill, and that explains why I am a basket case even living on their porch and spending less than an hour a day inside the house using the bathroom and the kitchen.

In March I spent a great deal of money being “treated” by a shaman who has “cured” a couple people of MCS (I have mold illness.) The MCS person I talked to who had been cured, strongly encouraged me to see this guy. I saw him, I paid him $1500, he did nothing but force me to inhale sage smoke until I had lung damage, and then told me it was my own fault for not being cured because I did not believe enough. MCS is an illness with a strong psychological component, in that it has a feedback loop going on with the amygdala. Mold illness is different, and people with MCS typically do not understand what mold illness is and think it is a form of MCS, which it is not. I also spent another $1500 spending a week with a Yaqui medicine man who made great promises, ignored me the entire time I was there, and told me that my illness is my own fault for having a bad personality.

Once again I developed sciatica; I was underweight at 89 pounds, and now instead of just one leg I had it in both legs, but it was different in each leg. The left leg was “muscular” sciatica, in which a muscle in my butt has clamped down on the sciatic nerve and is continually squeezing it. I was back to not being able to stand up, and one morning after trying for an hour, I crawled inside the house (literally) and asked them to go buy me a vibrator so I could see if I could get the muscle to let go enough to allow me to get upright. It helped but I had to get up every two hours around the clock and walk a half mile to be able to stand up in the morning. I was out walking in all temperatures and all weathers, every two hours, for weeks. My right leg had the other kind of sciatica, the bone-on-nerve type, because I was so underweight that I didn’t have enough fat to protect the nerve. The left leg would improve with standing and walking, but the right leg would get worse with standing and walking, so that my right foot went painfully numb and I had so much pain in the lower half of my leg, with numbness and pinched nerve tingles, that I couldn’t walk very far. So the fix for one made the other worse.

I found an acupuncturist who said he could fix the sciatica, and over a few weeks he did manage to alleviate the left leg sciatica, but he was unable to fix the right leg. I gave up being able to walk farther than 100 feet.  I tried two chiropractors for the right leg; one did no harm and the other made it worse. The acupuncturist told me that my constitution was such that I needed non-gentle treatment, and his treatment was painful. He said I would not respond to painless treatment. For each of these 40 minute treatments, I had to wear my respirator and lie face-down on the table. I would put my arms under my face to try to keep the pressure off, and my arm would be asleep by the time we were done, and the bottom of the respirator would have dug into my larynx, making it difficult to breathe. Later, during the summer, I found a different acupuncturist who was more effective and whose treatments were painless.

——————

I went and bought all new stuff to put in the trailer, because the only things that can be salvaged with security are made of metal, glass, and ceramic. Wood is out, plastic is very suspect, and everything else is suspect. The consequences of being exposed to even minute quantities of mold spores or mycotoxins are so severe that the expenditure for new things is mandatory. It is not the first time I have bought new clothing, and will not be the last. I’ve given up on anything nice and just buy in the kids section at the box stores.

I spent a day in the trailer, and come out with raised body temperature and severe headache. It has a lot of “composite” material inside it that was off-gassing and making me ill. It could take many months to off gas, and I was stuck again still on the porch. I was not happy and they were not happy. None of us wanted me still there but I had nowhere to go. I considered going back to live at DW’s location and decided that I will literally commit suicide before I will go back there and be subject to her again.

As the weather started to warm up I didn’t know what to do; I don’t do well in the heat, and it is going to be very hot very soon. If you have not lived in the southern desert southwest, you have no idea of the heat here. Think Death Valley and subtract just a little.

But the porch people came through, again. I will be forever grateful to them, and I will pay it forward as much as I am able. They came over to my house and built a custom garden shed for me to live in. It was only 6 X 10 but it was MINE, on MY property, and no one was bossing me around. I could go into the trailer to use the kitchen and bathroom, which I did, even in temperatures that must have reached 140 degrees in the summer. I had a portable air conditioner in the shed, and although it was completely dark inside, I survived through June with its incredible 110 degree temperatures, and on into July when the monsoon started. I had a TV and a computer, and a piece of foam rubber on the floor. That was it….I spent my days flat on my back watching TV, or semi-sitting contacting the world through the internet. I was still incredibly isolated but I was better off than I had been in quite a while.

We put a small refrigerator on the back porch, insulated with two-inch styrofoam glued to it to help its insulation level. It managed to keep things frozen during the worst part of the summer, for which I was grateful.

Partner H put in an incredible amount of time putting the two inch styrofoam on the shed and the refrigerator, and doing anything I ask in the way of help.

Two weeks into the monsoon, my body temperature went up again and I started having very strange nightmares. Something was “toxinating” me again. I had to get out of the shed. Fortunately the trailer was off-gassed enough that I could sleep in it, but the air conditioner was of no use. First, I was afraid to use it because if it molded up, which it was likely to do, I would have nowhere to go except literally in the yard. Second, it couldn’t keep up even with ambient temperature due to the trailer’s being broadside to the western sun. So I had a place to sleep, cook, and shower, but nowhere to spend the heat of the day. The heat of the day started about 9 a.m. when the temperature inside the trailer was 95 or so and continued well past dark.

So if it wasn’t raining I drove up the mountain to higher altitude and spent most of the day there, with a lawn chair, a packed lunch, and a book or two. I waited until dark to drive down, but the temperature was often still 100 degrees. And easily still 100 degrees inside the trailer when I went to bed. I used a fan and slept on an air mattress, on my tiny bench-bed that is five feet long and 22 inches wide. I had just a couple of hours in the morning to do any cooking I needed to do, empty the black water tank, do laundry using my Wonderwash hand-crank capsule, before I had to clear out and drive up the mountain.

On days when it rained, I couldn’t go on the mountain because I can’t be in the car with the windows up due to its also having mold in the air conditioner. So I had to go to the mall; the mall was iffy but do-able. I didn’t feel particularly well but didn’t crash. I’d take a book and either sit in the food court or on the couches out in the mall. Being sleepy was tough; I wasn’t sleeping well because of the heat but had to force myself to stay awake at the mall or get kicked out. The vendors and the guards all thought I was a homeless person, and I guess I was. One with a car and money, but homeless nevertheless.

As the daily highs dropped to around 90 degrees, I started staying home and setting up my lounge chair on the south, shady side, of my garage, next to the little piece of raw desert where the quail hang out. I read a lot of books and drank a lot of cold water.

Meanwhile, during these last months, I was trying to find a piece of land to buy so I could build a specialized house, one that would not develop mold and would be safe for me to live in. I looked all over the east side of town, where I now live and would much prefer to stay, but could not find anything suitable, even at more than I was willing to pay. Finally I looked in other areas, and found a parcel on the west side, that I bought. It felt like both the end and the beginning of a long trip. The end because finally I was in mentally competent enough shape, due to having finally gotten away from mold, that I could think straight enough to actually do something to help myself, and the beginning because this would be the next big thing I would try to do to live safely not outdoors.

Since the weather has cooled off enough to be inside the trailer all day long, I am spending much more time there; on MWF I go to a place where I receive Johrei, and I do some shopping if needed. I try to stay away for at least a few hours, because when I get back I have to take off my “outside” clothing, which is contaminated by definition, take a complete shower and wash my hair, and put on “inside” clean clothes.  On TThSat I go to the tennis court and watch friends play doubles. A few weeks ago I started visiting the bang board with my own racquet and trying to get a modicum of exercise. This has all occurred because I found a supplement that has made a huge difference; a friend recommended I try pycnogenol for hypoperfusion because calf cramps in the morning are a standard part of mold illness; in just one day the pycnogenol made it possible for me to point my toes and stretch, something I have not been able to do for a couple of years. It also seems to have taken care of the muscular sciatica. Since I have been able to cook for the last few months, I finally managed to put enough weight on (95 pounds now, up from 89) that the right leg sciatica went away just a few weeks ago. I didn’t think I’d ever be able to walk normally again, much less hit a tennis ball against a wall.

I even got to play an outdoor concert with a band I played with before I stopped being able to do anything inside buildings. I played my euph, sight reading the 2nd tbone part, and thoroughly enjoyed the scramble. I saw old friends and was happy to be doing something I used to take for granted.

Now in the middle of December (it’s 12/12/12 today!) the nights are chilly. We’ve had two nights that were at or below freezing, and I emptied the water from the trailer pipes. If I break a pipe I’ll be back in very deep doo doo; I decided not to try to run the water all night to keep it from freezing. Since I live with the windows open, I use a double sleeping bag, still on my five foot long, 22 inch wide bench-bed, next to the open window. I’ve grown so accustomed to fresh air now that I don’t think I want to live without it again. When I get up in the morning, I turn on my Presto Heat Dish for an hour or two and warm myself up. I have it on tonight while I’m writing this, because otherwise my feet will be so cold I’ll take two hours to get to sleep while they warm up. You do what you have to, even if it includes heating the great outdoors.

I guess I’ll halt this post now; not that anyone will read it. I needed a chronicle of the worst year of my life, hoping that I never have to live through anything like this again. I have new found compassion for the homeless and helpless, and new found gratitude for having people who were willing to help when I was unable to help myself. I hope I get the chance to pay it forward. This from a 63 year old engineer who, two years ago, was in full charge of Operations Planning at a utility, making a six figure salary. As the old TV show used to say, “THIS could happen to YOU” if you are living with mold.

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Responses

  1. Actually, I read it, all the way through. I’m glad you’re here for the new year. You sure sound a lot better than you did last summer.


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