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You probably got here through I Learned Something Today, the blog of a physicist/engineer disabled by mold exposures, and now you're wondering what's up with that. Here's the story, to the best of my reversibly-brain-damaged ability.
An Overview: What is Environmental Injury/Illness (EI)?
What happened to you?
You say you should be better in a couple years?
Are EI and MCS the same thing?
Are you sure this isn't just in your head?
Why do you have a blog about learning something?
You're an engineer?
Tell us about your name, Miss Molly.
If I wanted to visit, would I kill you?
Glossary
An Overview: What is Environmental Injury/Illness (EI)?
Your liver is supposed to remove toxic substances from your body so you can excrete them. No harm, no foul. All that alcohol you drank? It took a couple hours, but it's all gone. Same with the epoxy you used on that model airplane. Ok, so what happens when you get a major exposure or repeated small exposures to some chemical or chemicals, man-made or natural, and your liver gets behind, and you're still taking in more? Your body can stow chemicals in your fat cells, and then you are constantly carrying around extra chemicals. At this point your liver throws up its figurative hands and takes an extended vacation because it's tired. Now you're environmentally injured.
If you can't process one chemical, depending on how bad off you are, you may lose the ability to handle other chemicals. This is called spreading. I was made sick by mold mycotoxins, and now besides mold, I don't handle any perfumes, colognes, conventional laundry products (scented or unscented, particularly Bounce, which I used to use), any kind of medication (prescription or otherwise), formaldehyde, plastic, gasoline/diesel/exhaust fumes, pesticides, herbicides, dust (dust mites, too, but I mean actual dust), and foods, such as peas. You don't become an EI from peas, but you can choose just about anything else on that list, get too much of it at the wrong time, and join me.
Once you get sick, it's pretty hard to avoid exposures. You can't get to the store without dealing with car exhaust, and you can't go in the store if they use perfumy cleaning products or have remodeled recently, or if it's too crowded with people wearing all kinds of perfume, hair spray, laundry products, sunscreen, or bug repellent (pesticide). And all that's ignoring the chemicals in the merchandise.
You can wear some variety of carbon filter mask to avoid exposures, but the most-easily-tolerated masks, made of charcoal and organic cotton, are imperfect. I used one of those for a year, and for a while tolerated one of these giant, asbestos-handling, construction-type respirators, but I redeveloped a sensitivity to it. Another option is the I Can Breathe® masks, which are really handy, but they have polyester in them and they're kind of thin, so they're only good if you aren't too sick. Some people get an oxygen tank, which works great, but I haven't figured out how to do that.
As a side note, it occurs to me that the most important thing you can do if you develop sensitivities is to find other people who know more than you. Somebody has to take away all the things that make you sick, and you will likely be too sick to know what they are initially. It takes a couple months before your body can begin recognizing individual things that make you sick, and then you can probably figure things out on your own.
What happened to you?
My first major mold injury, undiagnosed despite multiple doctor visits, was from a leaky window in graduate housing and a roof that leaked like a sieve near my lab. I felt weak and tired from August until the ground froze. Thereafter I moved to a different house but developed chest pains every August. My sensitivity had spread from the mold in that room to the ambient, outdoor US East Coast mold. Several years after I graduated, I took a research engineering position with a hearing aid group at the University of Illinois at Urbana-Champaign, where I began a house-related, stachybotrys-induced decline that has led us to Tucson, where they think they do outdoor mold, but having lived in Illinois, I can say they have no idea. No one does outdoor mold like Illinois, eastern Texas, and southern Florida.
You say you should be better in a couple years?
That's what my doctor said, and he's been treating EIs for twenty years, so if anyone would know, it would be him. What I have to do is get the chemicals out of my system. The way you do that is by
1. Avoidance - don't add any new chemicals
2. Sauna
3. Exercise
In theory, avoidance is pretty straightforward. In practice, you would probably need a mentor to show you the ropes, and I can't do that here, so I'll tell you about sauna and exercise. The way you get the chemicals out of your fat cells is by heating yourself up, and then you get rid of them by sweating. The easiest way is to use a sauna - a carefully chemical/smoke free sauna. Infrared radiation helps, too. (Heavenly Heat Saunas is the EI brand of choice, just so you know.) I didn't know anything about saunas when I went to the doctor, but now I know that while regular people cook at higher temperatures for longer, sick people start at about 140 F (60 C) for 15 minutes. If you get better at it, you can stay in longer, but if you loosen up too many chemicals, or 'detox too hard,' you'll get sick, so you can't push it. Also, it's important to take vitamin C and a bunch of other supplements to help you detox, plus a multimineral, and good luck tolerating all that. I, personally, am not always good at getting in the sauna because, as good as I am at sitting around thinking up random topics to contemplate, it's less entertaining than exercise.
Exercise makes you feel better. One of the things I've heard over and over from EIs is that you have to exercise, and 'if all you can do is crawl, then crawl.' In Tucson almost any time of the year, I can heat myself up and sweat just by walking uphill. If it's hot outside, I can start to detox too hard, and I have to stop for a minute and cool off. Biking, I can get a lot more exercise before the detox gets too strong, so I feel a lot better that way. I know I'm better than when I first came to Tucson, but it's a long haul, and we'll see how I turn out.
Are EI and MCS the same thing?
Environmental Injury (EI) and Multiple Chemical Sensitivity (MCS) are the same illness, but since I'm highly sensitive to mold, which isn't usually considered a chemical, even though mold mycotoxins are chemicals, I prefer EI. Also, there was some news show in the '80s where they made some EIs look like total wackos, thereby associating MCS with wackos. The EI community is still pretty annoyed about this. They told the news guy what accommodations they needed, and when they got there, he didn't do it, so they got sick. It would have been terribly surprising if they didn't look like wackos. Reactions suck.
Are you sure this isn't just in your head?
Yes. Now I'm going to tell you my husband's nickname for me when we first came to Tucson and I was still in very, very bad shape: psycho wife. I don't remember a whole lot about that time, and he didn't tell me about it until I felt better, but apparently I felt called upon to make decisions, and I did. Any choice was fine as long as the decision was made. I hear I was completely irrational, and y'know, I have a PhD in physics. You don't get those by being irrational, and you can judge my rationality right now by what you're reading. I'm a little sarcastic sometimes, but I don't think that makes me a psychiatic case.
So I can see how some of us might appear nuts, and we do have our fair share of nuts, but so does every other segment of the population. Just look at our elected officials (cheap shot).
Why do you have a blog about learning something?
When you have an illness like this, you have good days and bad days. Your memory is less than reliable sometimes, and the days run together anyway because you can't work. With the blog, at least I know I did something. It helps.
You're an engineer?
I started out as a low temperature physicist studying superfluid helium. There aren't any jobs in industry in that field, and I didn't want to stay in academia, so I did the jack-of-all-trades thing and ended up a radio frequency engineer. There was a group at the University of Illinois working on hearing aids that needed one, and there weren't any in town, so I was close enough. I developed an antenna/electrode system that allows signals to be sent through someone's head so two hearing aids can share information. Other group members were working on an algorithm that, with the information sharing, creates a very good directional hearing system, eliminating the cocktail party effect for people with hearing loss, who cannot directionally locate sounds. I might get a patent out of it, and it amazes me that I was able to function well enough to do that. I figure that when I get all the mycotoxins out of my brain, I will be totally brilliant, but we'll see what happens. I'm thinking about being a signal processing engineer next time, but RF was pretty entertaining.
Tell us about your name, Miss Molly.
Long story made short: I named myself after my dog. Read on if you like dog stories.
I collected an elegant-looking greyhound or whippet cross named Molly from the Newington, CT Humane Society in September of 1993 when she was about five. She was left there because of divorce, and she was very, very timid around men or anyone younger than about 25. She really wanted to be dominant, too, so we had a few big arguments, but it got so I could sneak her into my office at night to join the homework brigade. That summer I sneaked her in during the day, and she started deciding that some men were ok because the guys in the machine shop would feed her dog treats. Next thing I knew, we were sitting on a bench outside this one room waiting for a really loud pump to finish, and the department chair went by with a prospective student and introduced Molly as another grad student. We stopped sneaking, and in the fall, she started attending classes. She okayed my future husband in the fall of 1995 when he let her lick the dishes in his dishwasher.
She knew a lot of English besides the obvious stuff:
- get up - I'll fluff up your dog bed for you
- here I come - keep going, I'll catch up
- slow down - I can't keep up
- where are you going? - you turned the wrong way
- I forgot something - I have to go back for a second, then we'll go
- I have to go to the grocery store - I'll be gone for an hour, then be back with food
- you get to come too - it's cool enough out you can wait in the car
- do you want to be a clean spot? - hop in the tub, you need a bath, but the word 'bath' freaks you out
- let's go upstairs/downstairs/this way
- come around - you wrapped the leash around a tree, unwrap it, please
- wanna go home where it's warm? - it's really, really cold out here, and you have permission to pull me home as fast as you can.
In Illinois, she had to stay home in the house we didn't know was moldy. She was injured badly enough to develop elevated liver enzymes and, eventually, diabetes. Around then she needed help during the day when we were at work, so she started going to doggy day care, where she earned the honorific 'Miss' from the vet techs. With the diabetes came loss of vision from glaucoma, and she learned some good navigation words, mostly so she didn't trip over curbs:
- step up/down - there's a curb there
- turn left/right
- careful - slow down, it's uneven
- 3, 2, 1, flat - I'm counting down stairs for you, so please don't pile into the floor when you get to the bottom
We now know that she developed what people refer to as 'end organ failure,' but it is easily confused with old age, and we finally had to put her down in October of 2002 at the age of 14.
She was a good dog.
If I wanted to visit, would I kill you?
You probably wouldn't kill me. If you only have a few hours, we can probably meet at the national park or someplace outside as long as there's a breeze and I stay upwind. If you use dryer sheets or heavily perfumed anything, it'll be better if you wash your clothes twice in baking soda and hang them out overnight before we get together. If you're going to stay a few days, here's the drill:
1. Assemble your untreated cotton clothing. (Wrinkle-free cotton and any synthetic hold fragrances like you wouldn't believe.)
2. While you're sorting things, run your washer with a gallon of vinegar in it and nothing else.
3. Now you can wash your clothes, using hot water the whole time. The first time, use a cup of vinegar for detergent. The second time, use a cup of baking soda. Now just use water for about four more times, and then you're ready to put things in the dryer, assuming you've never used dryer sheets. If you use dryer sheets, hang everything up to dry, but someplace that isn't moldy or stinky, so not in the garage, or a basement that's ever had water in it, or outside on the East Coast in the late summer or fall.
Oh, yeah, and I dismembered the guest futon for its springs, so if you're sleeping over, I have a hammock you can try, or you can bring your camping gear and hang out in the laundry fumes on my patio.
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