Breathez

Church Update

2011-06-09T09:11:00.002-06:00

I thought about titling this post "Weariness" or "Concession" or even "I Give Up." I haven't posted for such a long time because, in truth, I am weary of the battle that comes with chemical sensitivity. I haven't abandoned the cause entirely. I still read the MCS-America daily updates (or at least scan the headlines) and put my two cents worth in whenever there is an applicable discussion on Facebook. However, I've quit talking about the issue at church and I've (mostly) quit whining about it to my family (much to their relief, I'm sure). Because, frankly, I think it's a lost cause, at least in the LDS Church here in Helena, Montana. And who wants to fight a losing battle?

I've settled into a Sunday routine that works most of the time. I attend Sacrament Meeting (worship service) with my daughter and her husband. I often wear my mask and sometimes sit in the foyer, but it is worth it just to sit with family, the youngest boy often snuggling up to me during the meeting. It's not my own ward (congregation), but I have come to know several of the families there and don't feel like a total stranger. We sit on the back row of the overflow area of the chapel, and most people just leave us alone back there. It is never what I would call "fragrance free" but it is tolerable most weeks. I leave immediately after the meeting so as not to catch the fragrance of people walking by.

My only other involvement with church people is through the Visiting Teaching program of my ward Relief Society (the women's organization). I had asked to not have anyone come to our home, but the Relief Society president recently assigned a good friend who also has some chemical sensitivity to come visit me once a month. She is really the only person in my own ward (other than my husband) with whom I have any regular personal contact. I also mail the Relief Society newsletter with a short personal note to four other women in the ward each month. One of those women is an old friend and calls me occasionally.

There are two things I miss most with this arrangement: the sense of community and being part of the music. Every once in awhile I think, 'Maybe I should try again, to ask people to accommodate my needs so I can be more involved.' Then someone says something like I heard a couple of weeks ago from a family group that was looking for a place to sit before the meeting. One of the men, glancing over at me, said something to the effect of, "Well, we can't sit at the back because I'm wearing cologne." He looked at me and smiled as he said it, figuratively patting himself on the back that he was willing to find another place to sit to keep me safe, but I couldn't help but feel that he really didn't understand. Did he not see the signs, on every outside entrance to every LDS Church building in the area that ask everyone to please come to church meetings fragrance-free? Apparently, that doesn't apply to him. He's special. I'm not.

So, I give up. It is what it is and it isn't going to change. It's comfortable enough. I'm not sure what I'll do if my daughter and her family leave the area (a very likely possibility in the next few months). Perhaps I will try going to Sacrament Meeting in my own ward, sitting by myself at the back or in the foyer, mainly to keep up appearances and maybe, in some small way, to feel like I'm still part of the organization that my ancestors helped to found and to which I've given so much of my life.

Merry Christmas

2010-12-23T14:45:00.002-07:00

It's a beautiful sunny winter day in Helena, Montana. The air is crisp and clean and I don't have to go out into any stores, so I'm breathing easy. I hope you are too.
Happy Holidays to everyone!

Is it Christmas already?

2010-12-19T15:28:00.001-07:00

I have been so remiss in blogging for months now. One of my New Year's resolutions is to be more consistent. There is much going on in the MCS world, so there is much to post about--I've just been a little busy. In the past six months I've spent a lot of time helping my children. One daughter moved from the east coast to the west coast and just in the months of October and November, I had three new grandchildren born. I've done a lot of traveling, thankfully in pretty good health.

Most of my travel has been in my (long-ago-outgassed) Toyota, but two trips, one to Virginia and one to San Diego, had to be in the air. Between chemical sensitivities, fibromyalgia and celiac disease, there have been some challenges. Here are a few things that made it easier:

When driving, I pack all my food with me so I don't have to spend much time inside stores and restaurants. I use cotton cloth bags to carry the food and have lots of bottled water with me too. I carry my own soap for public restrooms.

I try to stay with (safe) relatives whenever possible, but when I do have to stay at a motel, I call several days in advance and ask for a room that hasn't been cleaned for several days. Best Western and La Quinta have been good chains to work with. I also have a small carbon filter air purifier that I turn on as soon as I get into a room. It sits right next to my face when I sleep.

Perhaps it goes without saying that I always travel with my own personal care items, including soap and laundry detergent.

At home I sleep on a Cuddle Ewe mattress topper, and I have a travel Cuddle Ewe that goes everywhere with me. I made a washable removable cover for it and also carry my own blanket and pillow.

Flying presents other problems. I always sit by a window and wear an I Can Breathe honeycomb mask. I also use an air filter that fits on the overhead airflow. (I think I got these from Achoo Allergy, but I can't seem to find them on their website right now.) I carry my own travel blanket and pillow, drink lots of water and carry my own food.

I have found that the airlines will change seats if there is a problem with fragrance nearby. This is an ADA issue in the U.S., so I'm not afraid to ask for accommodation.

My biggest problem on my last trip (in November to San Diego) was with the TSA (Transportation Security Administration) on the return flight. The new security measures require you to go through one of their machines or have a thorough pat down, either of which I consider unacceptable. The safety of the machines (San Diego uses the back scatter x-rays) is highly questionable and a pat down is not only a violation of personal space, but is also very painful for a person with fibromyalgia. I submitted to the machine, very grudgingly, and wrote a lengthy email to Delta Airlines when I got home, urging them to put pressure on the TSA to better accommodate persons with disabilities. I received a very understanding email in return from a customer service rep. who has asthma herself. She credited my Skymiles account with an extra 7000 miles to compensate for the trouble I went through and expressed Delta's obvious dislike for current TSA practices, but said there was nothing they could do at present to change things. There are so many horror stories out there about people with disabilities and the new screening procedures. TSA has essentially grounded much of the disabled community.

Anyway, I'm home again (for awhile at least) and trying to stay warm in Montana. Wishing everyone in the blog world a very happy Christmas week with lots of clean air to breath.

Power Point Presentation on Fragrances

2010-08-23T09:51:00.002-06:00

I've been taking a bit of a vacation from blogging this summer, but I just had to post a link to this very good Power Point presentation on the dangers of fragrances. It's short, yet covers several different points that should help people understand and relate to the issue of chemical poisoning and sensitivity.

Traveling...

2010-06-10T20:15:00.004-06:00

The Badlands of North Dakota

Afton Mountain B&B (Virginia)

Chimney Rock, Nebraska

Little Bighorn Battlefield (Montana)

I haven't posted on this blog for over a month because I've been on an extended road trip. From Montana to Virginia to Kansas City and through Wyoming, I've attended a son-in-law's law school graduation, stayed with good friends in Missouri and visited historic sites everywhere I've been. It's been quite the adventure.

I started planning this trip months ago. My biggest worry, of course, was how I would find chemically safe places to stay overnight and gluten-free places to eat. To my amazement and relief, I had very positive experiences on both accounts. It took hours and hours of advanced planning and much vigilance while traveling, but I am now safely at home, none the worse for wear.

To find lodging, I used several different resources, including The Chemically Safer Travel Directory (http://www.safetraveldirectory.com/) and Internet searches for chemically safe (and "green") lodging. Wherever possible, I stayed with family and friends who understand the issue and were more than happy to accommodate my needs. Without exception, I called every place I was to stay the day before and reminded them that I needed a room that hadn't been cleaned the day of my arrival and, if I was to stay more than one day, that I didn't want housekeeping services while there. I also traveled with a small, room-sized air purifier, which I turned on as soon as I arrived at a new place. I have long traveled with my own bedding and towel and I always stay where I can open a window (not on a busy street, if possible). Though I had some less than positive conversations with hotel managers while searching for accommodations before the trip, every place I ended up staying turned out to be positive, with hotel staff bending over backwards to make sure I was safe and comfortable.

As for eating, I started the trip with a list of restaurants and health food stores in every location where I thought I would be safe. Because there was so much I wanted to see, I didn't have time to eat out as much as I would like to have, but that was probably better for me chemically anyway (and definitely better on my purse). I ate a lot of peanut butter and corn/rice cake sandwiches, raisins and fruit. It was a real treat to find gluten-free crackers at the Trader Joe's in Cleveland and muffins at the Whole Foods in Virginia and Omaha. One of the best investments I made before the trip was in a nice portable cooler bag from LLBean. Most of the places I stayed had at least small refrigerators, so I was able to refreeze my ice pretty regularly.

Perhaps the most encouraging aspect of the trip was the attitude of most of the people I met when I discussed my chemical sensitivities. Without exception, everyone I spoke with knew someone else with chemical sensitivities (a family member, friend or co-worker), and many people told me that they had quit using fragranced products already. There were a few instances when I had to leave someplace because of fragrance, but if I mentioned it, the people were at least apologetic. My own attitude helped too. I went into this adventure knowing full well that there would be some places I would just have to walk out of, and I did, without making a big deal about it and without becoming too disappointed. Most of the historic sites I visited (and the graduation) were outside and not in big cities, so that was also to my advantage. I also planned the trip so that I would be visiting places on weekday mornings and during a time of year when most places are not yet busy with tourists. And I stopped at a lot of off-the-beaten-path (obscure) kind of places.

I guess one of the things I've learned about traveling with MCS and celiac disease is that I may not be able to go to some places or eat what everyone else is eating, but there is so much to see and do, so much history to learn, and so many interesting people to meet that I can have a great vacation in spite of (or maybe because of) my disabilities. I am glad to be home though. A month was perhaps a little long to be traveling. My energy really wained the last few days. So I'm trying to take it easy for awhile. Until the next adventure...

More Uses for Vinegar

2010-05-03T12:57:00.003-06:00

I've written about vinegar before, but I found an article on the care2.com website that discusses even more uses for this old household standby. Turns out, white vinegar (which contains acetic acid) is more useful than I'd thought. Though I haven't tried all of these suggestions myself, I'll pass them along and you can try them for yourself.

Cooking
--Add a few tablespoons of white vinegar to the water when poaching eggs to help the whites stay formed. Add a few tablespoons to the water when boiling eggs, and if any shells crack, the whites won't leak out.
--Soaking leafy veggies that are wilted in cold water with a little vinegar will perk them up.
--Rub your hands with white vinegar after chopping onions to get rid of the smell. [The smell of the vinegar with dissipate very quickly.]
--When cooking vegetables from the cabbage family (i.e. broccoli or cauliflower), add a little vinegar to the water to perk up the taste and reduce the gassiness they can induce. This also works when cooking beans.

Cleaning
--Clean and deodorize the garbage disposal by mixing equal parts vinegar and baking soda and putting id down the drain. After letting this fizzing mixture sit for a few minutes, flush out the drain with warm water.
--The steam from a boiling bowl of vinegar and water can loosen caked-on food and get rid of odors in the microwave. [This is for my children who don't clean out their microwaves regularly--you know who you are;^)]
--To make a trap for fruit flies, set out a small dish of white vinegar and some smashed fruit covered with plastic wrap with some holes in it. The flies crawl into the trap, but can't get out.
--If your glassware gets spotted in the dishwasher, wrap it in paper towels soaked in vinegar, let them sit, and the cloudy deposits will rinse right off.
--Instead of bleach on tile grouting, let vinegar soak on it and then scrub with a toothbrush.
--Clean scuffed or dirty DVDs by wiping them down with some vinegar on a soft cloth.
--To remove water marks on your wood furniture [if you forgot to use coasters, as your mother probably taught you], rub the furniture (always with the grain) with equal parts vinegar and vegetable oil.

Laundry
--To clean urine out of a mattress [because children and pets do have accidents], clean it with a solution of vinegar and water and then sprinkle some baking soda onto the mattress and brush or vacuum the residue once it's dry.
--Spray vinegar onto deodorant-stained shirts before washing to remove discoloration. [Of course, if you use natural deodorants you shouldn't have this problem in the first place.] Vinegar also works to remove mustard, tomato sauce or ketchup stains.
--Add a cupful of vinegar to the rinse cycle of your wash to freshen up bright colors. Acetic acid won't harm fabrics, but it dissolves the soap residue that can dull dark clothing. It also acts as a fabric softener, a static reducer and a mildew-inhibitor.
--Vinegar will loosen chewing gum stuck to car upholstery, rugs and carpeting.

Outdoors
--Remove old bumper stickers from your car by spraying with vinegar, waiting a couple of hours and then pealing off.
--Wipe down your car windows and windshield with a 3-1 vinegar-water mixture to keep them frost-free in the winter.
--Kill weeds and crabgrass growing in sidewalks and driveways by pouring vinegar onto them. A half-and-half solution of vinegar and water can kill garden slugs if sprayed directly on them.
--To extend the life of cut flowers, add a few tablespoons of vinegar to the water in the vase, along with a teaspoon of sugar.

Pets
--Wipe out itchy ears with undiluted vinegar to keep dogs and cats from scratching at them.
--Cats don't like vinegar, so to keep them from scratching at furniture or sitting in certain areas, spray a vinegar solution onto the spot.
--For outdoor areas, soak a sponge in vinegar and place it in the forbidden place to keep cats away. If a cat likes to mark his territory, spray the area with vinegar to help eliminate the smell and deter recurrences.
--Vinegar gets rid of skunk odor on pets. Soak the animal with a half-and-half vinegar and water solution and then rinse with water.

Happy Earth Day!

2010-04-22T10:52:00.002-06:00

Happy Earth Day to everyone and especially to dear Mother Earth!

Forty years ago, on the first Earth Day, I was a freshman in college. Though I was pretty much unaware of what was going on across the nation that day, I was painfully aware of the environmental problems in my own backyard. I had dealt with some minor allergies as a child, but that first year away from home had put my health into a tailspin, as I grappled with reactions to cleaning products, air pollution and my roommate's shampoo. By April of 1970, my dorm mates had dubbed me "Puff the Magic Hive" for my chronic hives and facial swelling, and just breathing had become a daily challenge. My roommates were concerned and sympathetic, to a point. The university officials were not. Had I dropped out of school and gone home (as my doctor and parents urged me to do), I would have lost a semester's tuition and rent. (There was no clause in my housing contract allowing me to leave because of health problems.)

Those who know me know that I can be pretty stubborn, and at eighteen, education was the most important thing in my life. After all, how was I ever going to write the Great America Novel if I couldn't even make it through my freshman year in college? I did, however, drop a couple of classes (keeping only my favorites, of course) and stayed with a friend off-campus during cleaning week (the annual spring cleaning in the dorms--very, very toxic). But I have to say that by the end of April and that first Earth Day, I was actually starting to feel a little better. Spring in Utah can be beautiful, and warmer temperatures meant open windows in the dorms and in classrooms (pretty common in those pre-air-conditioned days). I took to doing most of my daytime studying on the lawn outside the dorm or sitting on a bench in the student quad, and I had long since found a quiet corner on the top floor of the library for evening study sessions.

So, even though I didn't know about that first Earth Day at the time, I had learned a lot in the previous months about chemicals and pollutants and how they affect the human immune system. I may not have been part of any environmental sit-ins or "teach-ins" (as they were called at the time), but that was the beginning of my own environmental consciousness. Sown in a time of personal peril, those seeds of eco-activism have grown to maturity for me and for the world in a way that gives me hope for the next generation. I can't bring major corporations to their knees (though I do try) or have much influence on corrupt foreign governments, but I can change the environment in which I, and the people I care for, live. And, I can teach others and help change attitudes, one person at a time. That's why I celebrate today, because Earth and the people who live here are worth it. I hope you all have reason to celebrate too.

Healthy Transportation on a Budget

2010-04-21T16:15:00.002-06:00

In my continuing series for Earth Week on staying healthy on a budget, I have just a few ideas about transportation. It seems obvious that a major part of reducing chemicals in the air we breath involves reducing the exhaust we produce from our vehicles. Luckily, most of what we can do individually to reduce vehicle pollution also saves us money. There are many news articles and blogs this week talking about this, so I'm just going to throw out a few ideas that work for me.

1) Use public transportation whenever possible. Alas, the only public transit system where I live is by appointment only and extremely limited even then, so I generally only use public transportation when I'm visiting someone else's home town.

2) Ride a bicycle or walk. This is great exercise and we do have good bike paths here. It's just a little far between destinations and there's that problem with sub-zero weather in January, but don't let me stop you if this is what floats your boat.

3) Drive an energy-efficient car. I drive a 2002 Toyota Camry (which we bought used) that still gets between 30-35 miles to a gallon of gas with 180,000 miles on the engine.

4) Carpool to work, school and church activities. I work at home and MCS keeps me from going to most activities, so this isn't an issue for me, but I remember the days with teenagers who always had to be ferried from one place to another.

5) Plan your errands and shopping to use the least amount of gas. Try to consolidate your outings into a couple of trips a week instead of every day. Sometimes I have to go to the post office to send an urgent order to a customer, so I'll try to add another errand onto it. Also, if I'm going downtown (it's called the Gulch here) or to a large shopping center with several different stores, I park my car in one place and walk. Besides saving fuel and money, I figure that's my exercise for the day.

6) Don't make left turns. This is an idea I borrowed from UPS (the big brown trucks). They have a company policy of planning their deliveries so that they go in a big circle, only making right turns. They have found that they save millions of dollars a year by doing this. When you make a left turn you have to wait for oncoming traffic and inevitably sit and idle your engine (thus wasting precious fuel). I find that in our town there are times when I just have to make a left turn, but I try to avoid them as much as possible and it does make a difference.

7)Vacation close to home or in your own backyard. Find out what there is to see and do in your home state, city or neighborhood. One of our favorite activities is an afternoon at the state historical museum or Saturday morning at the farmer's market (where you can get those cheap local organic vegetables I talked about a couple of days ago).

Saving fuel (and thus keeping the air cleaner) is really a mindset more than anything. We don't have to deprive ourselves of fun activities; we just have to think and plan a little. And just think of what you can do with the money you save.

Heathy Housecleaning on a Budget

2010-04-20T09:46:00.002-06:00

This is the second instalment of my earth week series on staying healthy on a budget. Like with organic foods, I forever hear the argument from people that chemically safe cleaning products are just too expensive. All I have to say to that is hogwash.

First of all, if you really want to do this right, get into your broom closet and under your kitchen and bathroom sinks and take out all those cleaning products you use. I'm guessing, if you're like I used to be, you have quite a number of items, which may include: spray glass cleaner, countertop spray, anti-bacterial wipes, toilet bowl cleaner, furniture polish, powdered cleanser, liquid cleanser, tile cleaner, shower scrub, carpet spot cleaner, oven cleaner, lime remover, chlorine mold spray, etc., etc. There are so many products on the market (and they have such cute advertisements--oh, those funny scrubbing bubbles!). Well, I'm about to make your life a lot simpler, not to mention less expensive, if you just follow some simple suggestions.

1) Go for multi-function and cut out all the unnecessary items. For the perfect (and cheap) all-purpose spray cleaner, mix vinegar with water (1 part vinegar to 2 parts water for most applications; 1 to 1 for tougher jobs) in a good spray bottle (available for $4.95 at Target). Label the bottle and use on windows, mirrors, countertops, and any other smooth waterproof surface, including your stove top.

2)For tub and tile surfaces and your toilet bowl that may need a little bit of abrasion, mix a little baking soda with water and scrub with a sponge. Or, try the following recipe:

2 cups baking soda
1/2 cup castile soap (Dr. Bronners works well)
4 teaspoons vegetable glycerin (works as a preservative)
5 or more drops essential oil (optional), like tea tree,, rosemary or lavender
Mix together and store in sealed glass jar for up to two years. Add more of the liquid soap or a little water to get the consistency of most store bought softscrubs.

Or, if you don't want to mix your own, Ecover makes a good softscrub cleanser and Bon Ami is an effective (and not very expensive) natural dry cleanser.

3) Buy a couple of microfiber dust cloths (available at K-Mart, WalMart, Target, etc.) and dust weekly. Wood furniture does not need regular waxing and most furniture sprays only make the wood attract more dust. If your fine wood is drying out and needs a little help, try using plain beeswax or beeswax mixed with a little olive oil rubbed in with a soft cloth.

4) To battle mold and germs, replace all those anti-bacterial products with one of the following sprays (mixed in good spray bottles and well-labeled):

A. 2 ounces tea tree oil mixed with 32 ounces water
Use on hard surfaces in kitchen and bathroom or around windows.

B. 50 drops GSE (grapefruit seed extract) mixed with 32 ounces water
This can be sprayed directly into the air (but not at people, please) as an air cleaner.

Yes, tea tree oil and GSE are expensive, but you don't need very much and these spray bottle mixtures will last you up to a year, because you don't need to use them very often if you're using the other products I suggested on a regular basis. Which leads me to the last suggestion:

5) Clean regularly and teach other household members to clean up after themselves. The beauty of using safe cleaning products is that they are safe for everyone to use. Even a four-year-old can clean a window with vinegar spray, and by seven he can be scrubbing the bathtub. Keep a pile of rags (a good way to use up old t-shirts and pajamas) under every sink to be used for spills and muddy footprints. Just plain water works fine in many cases.

Though Proctor and Gamble and the Johnsons would like us to believe that we NEED all their cleaning products, the truth is that we don't. Life can be so much simpler and healthier without them and every bit as clean.

[Note: if you have a particularly tough cleaning problem that I haven't addressed above, please feel free to email me and I'll help you find a safe solution.]

Eating Organic Foods on a Budget

2010-04-19T10:56:00.003-06:00

Happy Earth Week to everyone! As this is the week (and Thursday, the day) we celebrate our beautiful earth, I'm going to use this blog to propose some things we can do to make the earth a healthier place for everyone.
One of the arguments I get from people all the time is that all the things we can do to protect the earth and ourselves--eating organic foods, using safe cleaning products, using less fossil fuels, etc.--are too expensive. Who can afford to live this way? Well, I'm going to give you all some ideas that I hope will motivate you to at least try some of these things. Because, as I have learned from my own and others' experiences, it really is cheaper in the long run to go earth-friendly.

To start off with, let's talk about eating organic foods, which protect the earth and our health by not using poisonous chemicals in the growing process. I will admit that if you walk into your local Safeway store you will find that a pound of organic bananas costs more than a pound of the inorganic ones (about 30 to 40 cents more sometimes), but there are some things you can do to save money and still eat healthy. Here are some suggestions I found on wikihow.com.

1) Buy food items in their raw, unprocessed form and cook from scratch. Processed organic foods (like crackers and bread) are really expensive, but buying the ingredients (organic, of course) and making your own from scratch is often cheaper than buying the same item in processed inorganic form. And, believe me, once you've made the same recipe a half dozen times, you'll be able to do it so quickly, you'll hardly notice the difference in the convenience. I always make a full batch of muffins, biscuits, etc. and freeze them individually for eating on the run (not a good way to eat, but inevitable sometimes).

2) Buy in bulk. Every health food store and many chain stores (like Safeway) have organic food in bulk bins. And don't forget Costco and other discount stores, which sell organic rice, beans and even raisins in bulk packages at prices equivalent to the non-organic.

3) Buy in season. Apples are harvested in the fall, oranges in the winter months and summer squash by mid-July, so it makes sense that these items are going to be at their least expensive when they are at their most plentiful. They are even more inexpensive at the end of the growing season. I bought organic oranges last week for 79 cents a pound and in December I was buying organic apples for even less than that.

4) Buy locally. Some of the cheapest organic produce I buy is at our local farmer's market every Saturday from May through October, and most health food stores sell local produce and meats as well. Local is almost always cheaper when it comes to organic.

5) Befriend an organic gardener or farmer. Come to my house in August and you can have all the zucchini you want.

6) Choose the foods that it is advisable to only ever eat organically, which include the following:
beef, chicken and pork
dairy products
strawberries, raspberries & cherries
apples & pears
tomatoes
spinach & salad greens
coffee
potatoes
peaches, nectarines & apricots
grapes
celery
peppers, green & red

7) Grow your own. If you have the time and space, this can be the best way for you to have organic vegetables. If you plant a large garden, this can require a significant outlay of cash at the beginning of the season for seeds, organic fertilizer and gardening equipment, but the payoff at harvest time can be phenomenal. You will also have to have some way to preserve the food if you want to save some for the winter months, but a good freezer or several dozen quart jars and a pressure canner will provide food storage for many years.

8) Remember that Rome was not built in a day. Most of us come to healthy eating one step at a time. The important thing is to make that step. Maybe this year you start with shopping at your farmer's market or growing some herbs in pots on the back porch. Every healthy food you eat is one less unhealthy food you eat, maybe more, because, at least for me, healthy food tastes better and makes me feel better, so I'm not as inclined to overeat. Plus, I have less desire for the really expensive snack foods, like chips and ice cream (well, maybe ice cream sometimes).

Happy organic eating!

Random Thoughts

2010-04-13T15:08:00.002-06:00

The US Census Bureau has had a major computer glitch, so I haven't had much census work to do this week. Some interesting things have come through my email that I thought I would share.

There's a great checklist for a safe and healthy home over at the Environmental Working Group (one of my favorite websites).

May is MCS Awareness Month and MCS America has some great information you can pass on to family and friends, including some one-page handouts, which I intend to mail to all of my family members.

The buzz on the internet is that Congress is poised to reform the Toxic Substance Control Act (TSCA), an antiquated law passed in 1976 which does little to control the use of toxic chemicals in products we use every day. PLEASE, PLEASE, PLEASE contact your senators and representatives and tell them how important it is to you personally that they reform this law.

This week's "well duh" headline: "Exposure to air-polluted environment impacts children's health..." Actually the ensuing article (a news release from the University of Southern California dated April 6, 2010) was very interesting, especially this statement: "In a study that looked at statistics on children's health in Southern California communities, researchers found that those who attend schools near high-traffic areas are 45 percent more likely to develop asthma..." No surprise there, but it's nice to have scientific backing. The study was reported in the journal Environmental Health Perspectives.

And finally, I hope everyone reading this is enjoying spring, because here in Montana it is definitely still winter--cold and snowing today.

Working for the Census

2010-04-06T13:06:00.002-06:00

I've been working for the Census Bureau for the past couple of weeks. I worked on the 1990 and 2000 Census taking, so I had a pretty good idea of what I was getting into and didn't expect to have any major problems with the work. My biggest concern was with the three full days of training. Something about sitting in an enclosed space with twenty-some-odd other people for eight hours a day was enough to make me question the wisdom of it all. As it turned out, it really wasn't too bad.

Census workers (enumerators) are divided up into crews with a crew leader who helps with the training and to whom we have to report every day or two. When the crew leader called me a couple of weeks ago to remind me of the training days, I told him about my MCS. I suggested that I would sit at the back of the room near a door and I would need to not be too close to other people. He said he had three people in the last training session who were also sensitive so he would do what he could to make the environment safe for me.

When I got to the first day of training, the room was pretty packed with twenty-four of us and no windows. However, the room did have an outside door, which the crew leader was willing to have slightly ajar for most of the session. I initially sat at the back, but there was a man nearby with some aftershave on that was causing a problem so I moved closer to the door. The crew leader had everyone introduce themselves, so when it was my turn I briefly explained the problem of my chemical sensitivity and what they could all do to help. The crew leader expressed his support and told me to move anywhere in the room that would feel safe for me or tell him what else could be done to accommodate my needs.

During the breaks that first day I had several people ask me about chemical sensitivity. Almost everyone knew someone else with MCS, and everyone who spoke to me was sympathetic and supportive. On the second day, I could detect no fragrance on anyone. So all in all, it turned out to be a good experience and I think I was able to educate some people. What was most surprising to me was that no one questioned the validity of my illness or complained about coming fragrance free. The Census crew leader and office staff who came asked me several times if I was alright and if there was anything else they could do to help. I have since learned that the U.S. Census Bureau has a fragrance-free policy in place for their permanent offices, so perhaps I shouldn't have been so surprised. That kind of good surprise I'll take any day.

Water

2010-03-23T12:49:00.002-06:00

Today is World Water Day (who knew?). For most of my life I didn't really think much about water. You just turn on the tap and get a drink, right? That's how it is if you live here the good old US of A, but in much of the world, drinking water is not taken for granted. According to a little news snippet I ran across today, more people in the world die every year from water-born illnesses (drinking unsafe water) than from violence. And those of us with chemical sensitivities know that even in the US, not all water is safe for us.

For example, chlorinated water is really a problem for me. I avoid it whenever possible. That pretty much precludes living on a public water system. But even with our own well, I know that our water is full of antibiotics, other prescription drugs and pesticides, because that's what other people flush down their toilets and what settles into the ground water from the farm fields around us. So we have our own filtering system, first, where the water comes into the house (who wants to take a shower in someone else's drugs?) and second, at the kitchen sink, where we get all of our drinking water. And, though the environmentalist in me balks at the thought of it, I drink only bottled water when I am travelling (and not the cheap stuff that was obtained from a municipal water source).

So, do you know what's in your water?

A Lazy Blogger

2010-03-18T15:33:00.003-06:00

There are about a half dozen blogs that I visit regularly. These are the blogs that I know will have new and interesting posts almost every day of the week, sometimes more than once a day. These blogs vary in their content but they all have one thing in common--they're group blogs. That is, they have several people who take turns posting (permabloggers) and they often add others (guest bloggers). Alas, Breathez is not a group blog. It's just me, trying to change the world, one blog post at a time. And, frankly, some days I just don't feel like changing the world. Some days I just want to crawl into my own little hole and pretend the world doesn't exist. And then there are those days (many of them) when I'm just plain lazy.

So this is my (hopefully) one and only apology to the blogging universe for not posting on a more regular basis. I AM passionate about social justice, especially for people with disabilities in general and MCS in particular. And if there are children involved, well, you'd better get out of my way. But that kind of passion is hard to maintain 24/7. My heart wouldn't be able to stand it, and, if I get riled about every little thing, how are people to know what's REALLY important to me?

So I'm still going to continue blogging, but maybe less often, because I'm tired and need to reserve my energy for some things coming up in my life--like working for the Census Bureau (because I really do believe that every one deserves to be represented in this great country and it's something I can do mostly outdoors) and taking a month-long trip across the country in May to visit family and see where my foremothers trod, not to mention helping a daughter and family move during the summer and playing with my grandchildren (including the three more due in the fall). There's just so much I want to do.

International Women's Day

2010-03-08T13:45:00.002-07:00

Happy International Women's Day to everyone. Today people throughout the world are celebrating women. In the United States, the entire month of March is celebrated as National Women's History Month. As an amateur historian who specializes in women's history, this is truly right up my alley. Traditionally, women have been left out of much of written history, so finding their stories can be a challenge, but the rewards for searching are amazing. We have so much to learn from the women of the past. Their stories are an essential part of our own and of those of future generations.

For more information on women's history, go to the website of the National Women's History Project. I especially like the following quote, found on this website:

Each time a girl opens a book and reads a womanless history, she learns she is worth less.
Myra Pollack Sadker

Church Update

2010-02-18T14:56:00.003-07:00

As many of you know, our local church leaders decided some time ago to establish a "fragrance-free goal" for all of the LDS (Church of Jesus Christ of Latter-Day Saints) buildings in the Helena, Montana area (including Townsend, Boulder, Lincoln and White Sulphur Springs). In this area the Church owns four buildings and rents two smaller ones. I blogged about this as it was happening but several people have asked me for an update. So here's where we are now.

Each building now has permanent signs on every entrance door asking people who enter to please be fragrance-free. These signs were made with the plastic lettering that adheres directly to the glass and sit right at eye-level, so they are easy to read and quite obvious to any adult entering the buildings.

LDS buildings typically have what is referred to as an overflow area at the back of the chapel which is a buffer zone between the chapel and the cultural hall (gym) behind. Large folding (accordion style) doors separate this area from the chapel and can be opened when seating in the chapel is full. This area has separate entrance doors from the foyers on either side of the chapel. It was decided that though the goal is for the entire building to be fragrance-free, the overflow area would be particularly designated as fragrance-free. It was assumed that there would always be some people who either forget or don't know to come fragrance-free, so these people would be asked to sit well away from the overflow area. We now have permanent signs (made and sent to us by the Church building department in Salt Lake City) on the walls next to the doors to the overflow areas in all of our buildings. These signs ask that no one who is wearing any type of fragrance sit in the overflow areas.

"So how is all this working out?" some have asked. Actually, it is working pretty well. One thing that has helped is to have the large accordion doors to the overflow areas stay closed until just a minute before the meeting is to start. For the most part, that keeps people out of the overflow area unless they want to sit in the fragrance-free area. Of course, there are always stragglers (latecomers) who end up sitting in the back, but I have been able to sit in the overflow area (albeit in a chair off to the side in the very back corner) without any difficulty since the beginning of this year. It is SO much nicer than last year, when I was sitting alone in a classroom listening to the audio transmission of the service. There was one Sunday when the meeting started and no one had opened the big door, so I had to get up and opened it myself. It was very noisy and everyone stared at me as I did it, but I haven't had to do it myself since then.

We certainly have made progress, and I am appreciative of all the people who have worked to make it possible for those of us with chemical sensitivities to attend church meetings (we have identified at least 30 LDS Church members in this area). After our Sacrament service, we have auxiliary meetings for children and adults. I have not been able to attend these meetings safely, though I have tried a couple of times. The classrooms are just too small and there are still a few people who don't seem to really understand what fragrance-free means. However, I am not complaining. I may try to attend these other meetings again during the summer, when I can sit by an open window, but for now, I am very happy to be able to sit in Sacrament Meeting with the rest of the congregation. Education is an ongoing process. Leaders continue to remind people to come fragrance-free, and I take every opportunity to define that term in discussions I have with people. So we're getting there, and that's a good thing.

Chemicals in Fragrances

2010-02-08T11:11:00.003-07:00

Lisa Frank at Enviroblog reported last week that the International Fragrance Association (IFRA) has published a list of ingredients that its members use to make consumer products. Of the 3,163 chemicals listed, 1 in 21 earned a "high" hazard score in the EWG's (Environmental Working Group) cosmetics database, 1 in 6 rated at least a "moderate" hazard score and 26 of them scored a perfect 10 (the highest score). Here's a list of those 26:

Aniline
BHA
Cyclohexanone
Dibutyl phthalate
Diethylhexyl phthalate
Hydroquinone
MIBK
Musk ambrette
Nano titanium dioxide
Nano zinc oxide (20-60nm)
Octoxynol-6
Octoxynol-7
Octoxynol-11
Octoxynol-12
Octosynol-13
Octoxynol-20
Octoxynol-25
Octoxynol-30
Octoxynol-33
Octoxynol-40
Octoxynol-70
PEG-3 Sorbitan oleate
PEG-6 Sorbitan oleate
Resorcinol
Styrene

Now, these names mean nothing to me, but I do trust the EWG. Lisa Frank pointed out in her blog post that phthalates are "potent hormone distruptors linked to reproductive system birth defects in baby boys," and octoxynols and nonoxynols also "break down into persistent hormone disruptors." Musk ambrette, which is toxic to the skin, brain and testes, has been banned from body care products by the European Union, but is apparently still in use in some fragranced products.

These chemicals may be present in any personal care and household products that contain added fragrance, and manufacturers don't have to list them as ingredients in these products. Usually, if ingredients are listed at all, these chemicals are grouped under the general heading of "fragrance." Scary, very scary.

Ranting

2010-02-03T09:56:00.002-07:00

I will apologize in advance for this rant, but there are just some things that need to be called out. The first is my ongoing battle with manufacturers who change the ingredients in their products, products I've been using (or eating) for a long time, but which I can no longer use with the new ingredients. This happens often with foods, which is why I read ingredient lists even on the products I have been using for years. It seems to happen less often with personal care items, but that's where I'm having issues this week.

Soon after I was diagnosed with celiac disease and MCS in 1998, I discovered the line of personal care products produced by Aubrey Organics. I have always had very sensitive skin and I need a good moisturizing lotion, no easy task to find when it has to be free of petro-chemicals, fragrance, almonds, sesame, wheat and lavender (all things to which I have been know to react). So I was thrilled to find Aubrey's Unscented Ultimate Moisturizing hand and body lotion. Not only was this lotion free of all the above-mentioned ingredients, but it actually kept me from looking like a dried up old prune. For the past couple of years I have been ordering this lotion by the case through my local natural foods store. When I went to reorder last month, I found that that the packaging had changed so I thought I'd better look at the ingredients. Sure enough, the ingredient list was very different.

When I called the customer service number at Aubrey Organics a couple of weeks ago, I was told that that the labeling had changed to meet new European labeling standards and that there was actually only one change to the ingredients, the addition of soy oil. To make this long story a little shorter, I ordered a couple of bottles to try and was REALLY disappointed. Not only is the lotion much less effective, but I seemed to be having a slight reaction to it. So I emailed the company to complain. The reply I received was very patronizing, but gave me the added information that they are now using lavender in the product, though it is listed as something else. So I grit my teeth (grrrrrr) and go on the search for another lotion. Meanwhile I'll just have to be a prune face.

My other rant topic is the mail. I came home from an afternoon with my grandsons yesterday to a pile of mail which my husband had picked up at the post office. (We have a PO box for our business.) As soon as I picked it up my head started to swoon (in not a good way). It smelled like someone had sprayed cheap cologne all over it. YUCK! I can only guess that either someone who handled the mail was wearing heavy scent or there was a piece of scented mail to which my mail was exposed in transit. Needless to say, it all got taken out to the garbage, except for the check from a customer which will have to go to the bank in a scent-proof bag.

So those are my rants for the week. Anyone else have a similar rant you want to add?

Some interesting links...

2010-01-30T11:07:00.002-07:00

Today is a busy day for me. I really have to get some work done and dig out the piles in my office, but I want to pass on some links to what other people are doing and saying about chemical sensitivity and the environment.

At The Canary Report Susie has generously posted an article I wrote about our recent house restoration project. While you're there, be sure to watch the short video on The People's Market in Oakland, CA. It's truly inspiring.

If you're a facebook fan, there's a new group to join, "I made a sustainable choice today." You can do a search for it or link through my page (if you're my friend, that is, which I hope you all are). The group was started by one of my favorite bloggers, green mormon architect. The idea is that you will make (at least) one conscious choice each day to do something that is environmentally sustainable. Some examples would be using reusable grocery bags, planning all your weekly errands for one trip, reusing something you have instead of buying new, etc. We probably do these kinds of things every day, but being part of this group has made me more thoughtful about it, causing me to do even more.

My grandson is working on a school project this weekend around the theme of "the power of one." He's making a collage of environmentally-friendly things we can all do (using recycled magazine pictures, of course). He's learning that even a seven-year-old can have a positive impact on the world. Just imagine what we can all do together.

Freedom

2010-01-25T08:21:00.002-07:00

"Prone to wander, Lord I feel it, Prone to leave the [home] I love..."*

I have always placed great value on personal independence, and my propensity for wandering often got me in trouble as a child. I remember laying in the cool damp grass of our front yard on a summer's evening and watching the trail of a jet plane streak across the amber sky, yearning to be on that plane, headed to some far-off place where no one knew my name and I would be free to roam to my heart's desire.

Yet, here I am on a chilly winter's morning, sitting in my "cave," bound to this eleven-by-twelve-foot room, like I am every morning, drinking my soymilk-banana smoothie and talking to myself on a computer screen. Like most (all?) people with MCS, I am mostly homebound, fettered by the disease that isolates me physically from the rest of the world, a canary in a not-so-gilded cage.

Some might think it a miserable life, but a closer examination of this room reveals a different picture. A large bookshelf next to my desk is filled with favorite stories and travel guides, tomes of knowledge from the past and present. On the wall to the right of my desk hang three small silk embroideries from the Mascarene Islands halfway around the world. A television and DVD player sit on another small desk across the room and a radio tuned to NPR (oh, what would I do without NPR?) rests on the floor at my feet. Then there is the computer (actually there are two), which magically links me to more people and information than my feeble mind can possibly comprehend. Like secret conduits, I am surrounded by escape hatches, vehicles for my wanderings, albeit mentally and emotionally, not physically.

Like all wanderers, sometimes I go too far. Lost in a website or 900-page novel, the ringing of the phone or a glance at the clock reminds me that I've forgotten to sleep or eat or, heaven forbid, pick up a grandchild from school. It is my family that keeps me grounded after all. Like the tethers on a gigantic Macy's Thanksgiving Day balloon, they hold me (loosely) to reality, obligation and responsibility. They are gentle and patient and I need them. Otherwise, I fear I would just float away into oblivion, never realizing I was even lost.

[*misappropriated from one of my favorite hymns, "Come, Thou Fount of Every Blessing")

Recent attacks made against MCS America

2010-01-14T13:03:00.002-07:00

Anyone who is familiar with MCS America knows the good work of this organization and Lourdes Salvador. This is always the first organization and website I direct people to when I am asked questions about MCS. I just really can't say enough to express my appreciation and admiration for MCS America. All of us with MCS have experienced negative reactions from people who somehow feel threatened by us and our disability. Yet, I was dismayed to receive the following statement in my email this morning. For now, I am just putting it on here so people know what is happening. Within the next couple of days I will post some ideas for what we can do to positively react to this.

A personal attack was recently launched against me and MCS America, in which many inaccuracies were published on Facebook for the sole purpose of stirring up controversy and tarnishing my reputation. This “controversy” is nothing more than the continuance of a longstanding, unsubstantiated smear campaign based on falsehoods and innuendo about me and MCS America.

The person or persons who launched this attack contacted the National Health Information Center (NHIC) to demand that the annual MCS Awareness and Education Month be removed from the National Health Observance Calendar due to MCS America, which was the contact organization for the event, being “a fake organization.” NHIC complied with the demand. The listing allowed schools, hospitals, employers, and other members of the public seeking information for awareness events on Multiple Chemical Sensitivity/Environmental Illness to contact MCS America for brochures, studies, posters, and other informational materials. The loss of this listing is a tragedy for our entire MCS/EI community.

The MCS/EI community is defined by empathy, support, sharing, and working together to find healing and to stop pervasive chemical pollution. We are not about personally attacking others within our community even if we disagree on an issue. That type of activity does not foster our cause, but rather promotes division and strife. Many members of our community work tirelessly to have MCS/EI officially recognized and to educate the public-at-large. The listing in the national calendar was another important step toward educating the public about MCS/EI and bringing us closer to having our illness fully recognized. It is astonishing that anyone would actively pursue the removal of MCS information in a national publication.

MCS America stands behind its mission to gain medical, legal, and social recognition of Multiple Chemical Sensitivity as a disorder of organic biological origin induced by toxic environmental insults; to provide support and referral services to individuals with MCS, chronic fatigue syndrome, fibromyalgia, and other environmental illnesses; and to ensure that environmental toxicants are identified, reduced, regulated, and enforced through lobbying for effective legislation. MCS America will continue to work toward these goals through whatever means available.

Informational materials about MCS Awareness and Education Month, which is scheduled for May 2010, are available through our website at http://www.mcs-america.org.

Thank you for your support!

MERRY CHRISTMAS!

2009-12-24T16:06:00.003-07:00

I have no profound words of wisdom or sentimental stories to share this Christmas Eve, only a very sincere wish to all of my cyber-friends for a very warm and cozy holiday season. May love be close and fear be far. Peace to all.
Catherine

Ahhhhhh...music

2009-12-18T06:40:00.006-07:00

"For unto us a child is born; unto us a son is given..." The strains of Handel's Messiah fill my office/sewing room as I wrap gifts, make doll clothes for a granddaughter and finish up my year-end bookkeeping. Music has always been an integral part of my Christmas celebration, synonymous with the joy of shepherds "watching over their flocks by night" and my younger self leaning over a balcony railing to see the Nutcracker prince defeat the evil mouse king. There are many things lost with chronic illness, but music, whether on a frosty Christmas morning or in the middle of a painful summer night, has the power to calm the troubled heart and sooth the hungry soul.

My friend Celia with MCS knows firsthand the balm of music. No longer able to lead the music in her church congregation because of recently laid (glued down) carpet, her home is nevertheless filled with many a "joyful noise." Her son, now with a family of his own, plays the piano and her daughter Cati is a harpist. Cati gets no complaint from her mother when her regular evening job and additional church performances this time of year require her to put in longer hours of practice. Celia's younger daughter Carrie came to their family from Romania nine years ago, a five-year-old unable to speak English. Yet, within her was the musical heritage of her ancestors, the universal language through which she so beautifully expresses herself on her violin. At a recent "Christmas Around the World" church activity, Carrie, somewhat unsure of herself in other realms, was able to speak the thoughts and feelings that she finds more difficult to express with words. And when Cati and Carrie weave their music together in duets, Heaven is truly in that home.

Music has changed for me over the years. Like Celia, I once directed the music in church meetings and, for many years, sat at the organ. Throughout the year, but especially at Christmas time, my cello was part of a piano trio performing for church gatherings, wedding receptions and business parties. When arthritis, fibromyalgia and chemical sensitivities put an end to my performance days, I mourned the loss. However, the art of listening has replaced the hours of practice and more than filled the void. My ears have learned new rhythms and the subtle nuances of counterpoint in a Beethoven symphony inspire me to notice the details in other aspects of my life. And, despite my limitations, the piano in my living room does not sit idle all the time. My own daughter often sits down to play when she is here to visit, and these old hands of mine can still pound out a pretty fair rendition of "Jingle Bell Rock" and "Up on the Housetop" when five-year-old Morgan calls out, "Grandma, Grandma, play me some music!"

Another "Well, duh!" Moment

2009-12-10T10:07:00.002-07:00

According to H. Josef Hebert and Dina Cappiello of the Associated Press, "The Obama administration took a major step Monday [Dec. 7] toward imposing the first federal limits on climate-changing pollution from cars, power plants and factories, declaring there was compelling scientific evidence that global warming from man made greenhouse gases endangers Americans' health." [emphasis added]

Really? What a surprise. The effects of pollution endanger our health? Who would have thought?

I read this statement in the Tuesday morning Helena Independent Record and all I could say was, "Well, duh!"

I know there's a lot of controversy (at least among non-scientists) about the efficacy and ramifications of global warming. As far as I'm concerned, they can argue until they're blue in the face. Whether or not they believe that global warming is taking place, or question whether or not it is man made, is not as important to me as the fact that pollution sickens and kills living things. I am interested in these other arguments only to the extent that the constant bickering prevents real progress in cleaning up the air we breathe, the water we drink and the soil in which we grow our food.

My message to the powers that be (lawmakers and corporations) is simply, "Clean up your act by cleaning up the world." Get a clue, people.

Merry (Non-toxic & Eco-friendly) Holidays

2009-12-05T13:19:00.005-07:00

As I sit at my desk in Helena, Montana, the scene outside my office window is right off of a Currier and Ives Christmas card. The prevalent color is white, from sky to trees to roofs to road and everything in between. A pile of wrapped gifts sits on the floor next to me, waiting for just a few more things to arrive in the mail before they are sent off to children and grandchildren next week.

Planning for, shopping for and creating gifts are a big part of my December celebration, but holiday shopping can be particularly problematic for people with chemical sensitivities. Though I'm a strong advocate of shopping locally, much of this years gifts have been purchased online. When I have ventured into a local store, it's been first thing in the morning on a week day, and many stores I avoid all together due to those evil scented pine cones that so many of them carry this time of year.

Needless to say, none of the gifts I've purchased this year have any scent. However, I have tried to go beyond just "unscented," looking for items that are useful, needed and as non-toxic as possible. I've not been 100% successful, and I'm certainly not pointing to myself as the best example, but here are some of the gifts I'm giving this year (without being too specific so as to maintain an element of surprise).

Piggy Paint "Natural as Mud" non-toxic nail polish & remover, for the five-year-old granddaughter who just has to have her toenails painted.

Glass mixing & storage bowls for a new homeowner (she's already received them--just couldn't wait).

Organic cotton pajamas for the little ones.

Natural nuts in interesting bottles I've gathered, for the neighbors.

Organic free-trade chocolate, for the chocoholics in the family.

Cotton towels.

Several hand-crocheted hats, scarves and a pink sweater.

Doll clothes made from leftover cotton scraps.

Olive oil lamps (from Lehmans )

Homemade certificates for childcare services. (I got the templates from Microsoft online.)

Pottery from a local studio.

A sewing kit and embroidery kit (for two grandchildren) made up of several things from my own sewing basket.

Items purchased from the Great Old Broads for Wilderness fall auction.

And last, but definitely not least, books.

Books are a problem, because most of them really aren't non-toxic or very eco-friendly. However, I just can't NOT give books. So I compromise (somewhat). Several books I'm giving this year were purchased used, and most of the new ones are paper bound. [Unless they're hand-bound, hardbound books take more natural resources to produce and use more glue (nasty-nasty) than paper bound.] And all of the books are ones that I believe will be kept and treasured for years, not just looked at and left to gather dust.

Though I'm pretty much finished with shopping for this year, I'd love to have more ideas to add to my file for next year.

Happy gifting!

Accepting MCS and other Chronic Illness

2009-12-01T08:41:00.005-07:00

Carefully folded into each of the almost-100 cards sitting on my desk and waiting to be mailed is our annual family Christmas letter. It's no secret that I like to write, and what could be better than writing about my own family? This year I've also mentioned the success we've had in working toward fragrance-free church buildings. MCS is so much a part of my life it makes sense to mention it in this letter. However, I did hesitate, because bringing up the subject will likely solicit the response of some well-meaning friend or family member who has heard of some miracle cure for all my ills. I understand the love and concern that comes with these recommendations, but I still don't appreciate them.

Those who know me know that I am no fan of medical doctors, and I am always open to new ideas for improved health and well-being. However, I will be forever indebted to the doctor who, eleven years ago, gave an honest reply to my question, "When will I be completely better?" Looking me directly in the eyes, but with a note of sadness in his voice, he explained that I would never be "completely better," that I had incurred permanent damage to organs and body systems (particularly my adrenal glands). Anyone with chronic illness knows the sobering feelings and thoughts that were mine that day and in the days to come. Yet, there came a time, not long afterwards, that I decided to accept what I couldn't change and work on what I could. That was a turning point for me.

Some make the accusation that accepting illness is giving up hope, but I would contend that it is quite to the contrary. By focusing on the things I can change (like diet, exercise and daily schedule) and accepting the things I cannot, I open myself up to hope for a life that can be full and sustaining, albeit different from the norm. By appreciating the things I do have (like supporting family members, a safe home and productive work I can do at my own pace) and putting aside what I have lost, I can move forward and enjoy my new life one day at a time.
There is a wonderful article on The Canary Report today about "The false promise of miracle cures for MCS," including ten characteristics of false cures for any illness. I wholeheartedly agree with the authors that such "cures" are a waste of our precious time and energy. I prefer to use what little residual energy I have on education and activism to lower the amount of chemicals in the environment and make the world, even if it's just my little corner of it, safer for everyone.

Macy's

2009-11-17T09:35:00.003-07:00

I received a phone call yesterday from a person in the circulation department of our local newspaper, informing me that the Macy's advertising insert for Thanksgiving Day would be scented. She had already spoken with our paper carrier and they had tried to figure out a way to get a paper to us sans Macy's insert. However, there was some concern that they would either forget or the other papers would contaminate ours, so we decided to just cancel our paper delivery for that day.

Believe it or not, I used to shop at Macy's occasionally (holding my breath as I ran past the cosmetic counter). They have some great sales. However, I quit going in there and had my name removed from their mailing list some time ago, after receiving a scented ad in the mail. Now I can say that I am really done with Macy's, and I sent them an email to that effect. I also gave them a few statistics about the prevalence of chemical sensitivity in the general population (an estimated 1 in 16) and the danger to the asthmatic population that perfumes and other scented products present.

If anyone else has an interest in writing to Macy's, they can be reached at the following addresses (not found on their website):

email: customerservice@macys.com

phone: 1-800-289-6229

snail mail: Macy's Customer Service
PO Box 8215
Mason, OH 45040

Their corporate offices are located at:
685 Market Street
San Francisco, CA 94105

Happy Thanksgiving to everyone. Enjoy the turkey, but skip the newspaper ads.

Signs (an update)

2009-11-15T13:56:00.003-07:00

Some time ago I mentioned in a post that we had been given permission to put up permanent signs in our church buildings. Well, happy day! The signs are up!

On each entry (glass door) to every building (a total of twenty doors in five buildings) are posted the following words:

Welcome

Our goal is to provide a fragrance-free environment

for everyone. In love and respect for others, please

refrain from using scented products on days you

come to Church.

"Verily I say unto you, Inasmuch as ye have done it

unto one of the least of these...ye have done it unto

me." [Matthew 25:40]

These door signs are made of vinyl lettering attached directly to the glass.

In addition, the larger four buildings have interior signs at the doors to the back of the chapel areas. These signs read as follows:

To enable those who are chemically sensitive to attend church, the overflow area of the chapel has been designated as a fragrance-free zone. If you are wearing a scented product of any kind, please be sure to sit in another part of the chapel.

The outside door signs (vinyl lettering) were purchased locally from a vinyl sign business. The interior signs were ordered and sent to us from LDS Church headquarters in Salt Lake City, Utah. They were made to match the other interior signs in specific buildings, and they look official. The goal is to have all of our buildings entirely fragrance-free, but we don't want to turn anyone away. Thus the wording of the interior signs.

I have been asked what we had to do to get these signs. The first step was to get the local church leaders (stake presidency and bishops, the lay clergy) on board. Then we needed the okay of the Facilities Management (FM) people (Church employees) , who were not initially in favor of permanent signs. It was only after I wrote a letter to the FM office in Salt Lake City, outlining the need for these signs and the support of local leaders, that we received permission to put them up. If you have local leaders who are willing to have signs in your buildings, I would recommend having these leaders contact your regional FM director or your regional DTA (Director of Temporal Affairs). Please feel free to site the Helena Montana Stake as an example of how this has been done. My husband (who is a member of our stake presidency) and I would be happy to give anyone more detailed information about the ongoing goal of the Helena Montana Stake to make all our buildings fragrance free. We can be reached by email at wheelpub (at) mt (dot) net.

Home Again

2009-11-03T15:03:00.002-07:00

Well, it's done. My house has been torn apart and put back together again, and I can finally say that overall, it was a successful project. The main objective was to rid the house of the mold in the walls and the sub-flooring. This was accomplished, and my worst fear (that I wouldn't be able to live in the house once it was done) has NOT been realized.

That doesn't mean it's been an easy month and a half. Like all projects, it took a little longer than anticipated. I am fortunate to have a daughter and her husband (and two adorable grandsons) who tolerated me sleeping on their couch for several weeks. They kept me busy and distracted me when construction frustrations reached a breaking point, which was often. And thank goodness for a phone that made it possible for me to be in constant contact with the project manager and my husband Randl (who was trying to live and work in the house through it all).

So here are some of the things we learned in the process (listed in no particular order):
--When you're the one paying the bills, you get to call the shots (regardless of what the "expert" builders think).
--A contractor is only as good as his sub-contractors.
--There are MANY chemically safe or safer building products available. You just have to go looking for them.
--Sub-contractors don't like to go looking for building materials or use materials with which they are unfamiliar.
--Don't assume someone understands your point of view. Explain, explain, explain!
--The best project manager in the U.S. (possibly in the world) is right here in Helena, Montana. His name is Mark.
--Painters march to the beat of their own drummers (and they're in a different parade than mine).
--Ceramic tile is relatively inexpensive but very practical, not to mention beautiful (especially when installed well).
--Glass tile is VERY expensive, but one little row of it can turn an otherwise blah room into a private spa (well, almost).
--A second shower in the house is a good thing.
--Covering the bathroom window with only a half-curtain lets the sunshine in and, combined with yellow walls, cheers the soul, even on a cold Montana morning.

There was still some odor from the building products when I came home, so we ran the air purifier and the three new fans around the clock for a week or so. But all I can smell today is the pumpkin from our garden cooking in the steamers on the stove. As soon as I get my new hall closet doors up, the whole project will really be finished. It's time to move on.

Keeping House

2009-09-14T10:41:00.002-06:00

Today marks fourteen days and counting before we begin our bathroom/laundry room remodeling project. This is one of those projects which started with just replacing the shower faucet and snowballed into a major house renovation that could give nightmares to even the calmest soul (which I am not). Between researching safe building products, choosing paint colors and arranging financing, I have spent untold hours on this project already, and we haven't even begun to tear out walls. Ironically, the strain of trying to make the project as chemically-free and healthy as possible is starting to take a toll on my health and I find myself right on the edge, physically and emotionally. Perhaps my biggest obstacle right now is my own fear.

But then, this is nothing new. I have a long history of taking on projects that seem like a good idea initially but ultimately scare me half to death. Just such another project culminated three weeks ago when I received the final printed copies of the book about my pioneer grandmothers which I started researching more than ten years ago. It's title, Not Just Keeping House, refers to the old census records in which the occupation most often listed for women is "keeping house." Such a description conjures up women in long skirts and aprons sweeping and scrubbing and fixing meals. While my ancestral mothers certainly did these things, that's hardly a description of ALL that they did.

When I woke up this morning, after yet another night of fretful dreams about bathroom sinks and painters that couldn't seem to get the color right, I realized that "keeping house" is exactly what I'm trying to do, but maybe not in the same sense that my grandmothers did. I'm trying to keep my house safe and healthy for me and my family. At the same time, I'm trying to keep it attractive and comfortable (even a bathroom should make you feel welcome). Perhaps most importantly, I'm trying to keep it all together as a whole--a place to live and love and just be. Sounds simple, right? Not so much, unfortunately.

But, like most other projects I've started with trepidation, it will come together and I will get my house (and my life) back, such as it is. In the meantime, nothing will be normal, and some regular activities (like blogging) may get pushed aside. But, never fear, I'll be back, and I'll have a LOT to say.

[BTW, if anyone is interested in the new book, you can see it and other great works :^) at wheelwrightpublishing.com.]

Not-so-far-away friends

2009-09-03T21:06:00.002-06:00

I've been feeling pretty down the past few days. It was nice to be at my sister's cabin for a few days last week, enjoying the fresh mountain air, but on the drive back all I could think about was the mountain of work I have to do to get ready to leave again in a few weeks when our remodel project starts. Then, I'd only been home a few days when I found mold on one of the bathroom walls we weren't planning to take out. Ughhh! I hate that stuff! Black, slimy, gooey, yucky. . .

So here I was tonight, sitting at my computer, trying to get some work done before our weekend company arrives, feeling sorry for myself and more than a little overwhelmed, when up pops an email from my friend Celia in Wisconsin. Now, I've never actually met Celia, only through email, but I feel like I've known her forever. Accompanying her email were pictures of a family wedding--happy smiling faces of people she loves. It was just what I needed to pull me out of my blue funk.

MCS is such a lonely, isolating disease. It's easy to get depressed and believe that no one cares. But this magical mysterious thing called the internet connects us through cyberspace with people in all parts of the world. I may not have many friends right here in Helena, Montana, but I do have friends in far-away places like Wisconsin, Arizona, Oklahoma, Idaho, Utah, Washington, Hawaii, Canada and even India. They are as close as my desk or my laptop computer (which goes everywhere with me).

Thanks and (cyber)hugs to all of you, my not-so-far-away friends.

"Breathe"

2009-08-30T11:32:00.003-06:00

I love bumper stickers. You know, those pithy comments we would never have the nerve to say to someone's face, which, when plastered to the rear bumper of a car, suddenly become socially acceptable. They tell the rest of the world (mostly complete strangers) which organizations we belong to, which candidates we voted for in the last election (or the last three, if we've had the car for awhile) and which social causes we subscribe to. Then there are the entertaining tidbits of dry humor and twisted irony.

I believe that the words on your bumper say a lot about who you really are. Sometimes, when I see a particularly interesting rear end statement, I'll speed up and pass the vehicle to see the driver, just so I can see what kind of person would say such a thing. I know, it's not fair to judge. Maybe the driver just borrowed the car from her brother-in-law, right? And she has no idea what propaganda she is spreading as she mosies on down the freeway.

Although I have enjoyed reading others' bumper stickers for as long as I have been driving, it's only been in the last five or six years that I've put them on my own car. It all started when someone backed into me in the church parking lot and put a nasty little dent in my rear bumper. Not a big enough dent to warrant a costly repair, but noticeable enough that I wanted to cover it up. And what better cover-up that a bumper sticker?

So, here's an inventory of what is on my rear bumper:

Great Old Broads for Wilderness [with the logo in the round]

Let children play! [purchased in protest of all-day kindergarten in our local schools]

There is no Planet B [a gift from my son-in-law, but a sentiment I share]

Protect Wild Utah [in support of the red rock wilderness I love]

Environmentalists do it for the next generations. [This is a very small sticker. My youngest daughter recently informed me it has a double meaning, but I claim ignorance of such.]

Sierra Club [This is actually a small window sticker.]

I'm running out of room on my bumper, but I've purposely saved a center space for the perfect MCS awareness sticker, something I have yet to find. I did see one the other day at the local health food store that said simply, "Breathe." If only I could, breathe that is. I think I want something a little more direct, but not too in-your-face, blunt, but in a kindly way.

So, what's on your bumper?

How safe is your car?

2009-08-24T08:00:00.000-06:00

Anyone with MCS knows that cars (and all other forms of transportation) can be a problem. The air inside a car can be contaminated with exhaust fumes, formaldehyde, fire retardants and phthalates. Just this week I was driving down the road and the driver in front of me gunned his engine and let out a cloud of black exhaust that threatened to asphyxiate me and the four children I had with me. I set a new record for how fast I can hit the button to close the outside air intake.

The heat of the summer sun can compound the problem, causing upholstery and vinyl components in the car to volatilize and become even more toxic. Parked in the sun on a warm day, the interior of a car can get up to 190 degrees F. When heat is combined with humidity, mold can become a problem as well.

So what's a person to do? Many people use those car air fresheners, but, needless to say, they only add to the already toxic chemical soup.

An article in the Hawaiian newspaper, Big Island Weekly, had some good advice for keeping your car safe, especially in a hot climate. Author Diane Koerner offered the following steps to a cleaner, healthier travel experience.

1) Park in the shade or in a garage whenever possible.
2) Place a sun reflector on the dashboard to reduce interior temperature.
3) Before getting into your car on a hot day, open all the windows and let it ventilate for a few minutes.
4) Use only natural, non-chemical cleaners in your car, just as you would in your home.
5) Keep the mold down in your air conditioner by turning it off a few minutes before you reach your destination, letting the fan run to dry the condenser.
6) Drive with some windows open (unless there has been spraying in your area or you are on a busy highway with lots of other cars).
7) If you have severe MCS or asthma, consider buying a car air purifier designed to remove gas and airborne particles. (www.NEEDS.com is one source.)

I feel so isolated anyway with MCS. Having a safe car is a top priority for me, even if it's just take a ride in the country once in a while.

Happy Trails!

Launching

2009-08-21T08:08:00.003-06:00

Sometimes, in the midst of all my struggles with chemical sensitivities, chronic fatigue, fibromyalgia and celiac disease, I forget that underneath it all I am really just me. I was reminded of this, and of what is most important in my life, last week when our youngest daughter Becca and her husband and one-year-old son came to visit.

The weather was cooperative for most of the week and we were able to spend copious amounts of time outside--playing at the park, walking Helena's Last Chance Gulch, splashing in the water at the lake and just sitting in our own backyard. Becca and Mike even went on an overnight getaway and left young Jack in our care. We took him to the Saturday market to watch all the people and their dogs and buy fresh corn and gluten free cookies.

Becca is our baby, the youngest of four, the last to leave home, the last to marry, the last to have children. When our oldest turned eighteen some years ago I had the (very mistaken) notion that my parenting years with him were over, that, like a NASA rocket, we would launch him out into the world and he would find his place in orbit with the rest of humanity, somehow independent of us, his parents. But I have come to learn that launching is a process, not a single event. Though each of our children has left home after high school to go away to college, and each has subsequently graduated from college, started a career, married and had children, these things have not all happened smoothly and on the timeline we would have expected.

Becca, like her siblings, had some difficult years in there. After initial launch (and even in the midst of that), there were some glitches. She left, came home again and left again a couple of times. She changed colleges, majors, friends, jobs and automobiles. Now she is very far away in Virginia, where Mike is poised to begin his last year of law school, and there is a promise of a job that awaits him upon graduating.

Watching three of my children, along with their collective five children, play at the beach last week, I realized that the launching process is, perhaps, coming to a close. Our oldest, with his family, just bought his first home. The next two are set to follow suit very soon. And Becca, my baby, the one who has perhaps traveled the most far a field in the process, seems to have landed.

I love my children immensely, passionately even. Like most parents, I spent many sleepless nights and long days caring for them and worrying about them. Much of my concern was motivated by my own ill health. I know my illness affected them. How could it not? Yet, sitting there at the lake last week, hearing them laugh together and watching them play with their own, and each other's, children, I had to think that maybe, just maybe, growing up with a slightly disabled mother wasn't too damaging after all. Maybe it even helped them become more compassionate, more interested in the welfare of others, more understanding of the differences that make us human.

Regardless of my influence, because of it or in spite of it, they have all grown up to be very good people, and now they are much more than just my children. They are my friends.

A Remodeling Adventure

2009-08-08T20:36:00.003-06:00

We have a problem with our bathrooms, a moisture problem, and it's going to get worse if we don't fix it now. The bad news is that it will require tearing up the floor and part of a wall and replacing the plumbing fixtures. The good news is that when we are done, we will have two beautiful new bathrooms, which won't make me sick, with a new ventilation system that will prevent any further problems. That's the goal.

More good news--we've found a contractor who is very familiar with chemical sensitivity and is willing to do everything to my specifications. More bad news--I will have to leave the house for a few weeks while the work is being done. (Sounds like a good excuse to go visit grandchildren, right?) Before I leave, however, I have to okay all the materials to be used, from tile grout to wall board to doorknobs. I'm really open to suggestions if anyone out there in cyberspace has been down this road recently, especially if you know specific products that have worked for you. (This is a thinly-veiled cry for HELP.)

We went through this experience on a much larger scale sixteen years ago, when we had a home built for us in Washington. We had a great contractor then too, and we learned a lot in the process. Then, when we moved to Montana, this house needed some serious work done to it. At that time, I purchased the book, The Healthy House, by John Bower (The Healthy House Institute, 2001, 4th edition). I still have this book, and it's a great resource.

I recently found another book too, Prescriptions for a Healthy House: A Practical Guide for Architects, Builders & Homeowners, by Paula Baker-Laporte, Erica Elliott and John Banta (New Society Publishers, 2008, third revised edition). The authors of this book are a physician (an environmental medicine specialist), an architect and a building consultant. All three of the authors have chemical sensitivities themselves and all have built safe houses for themselves. This book is really amazing. It has so much detail and takes into account the fact that people have differing sensitivities, so what works for one person may not work for another. The authors try to point out all the possible problems and how to solve them, but recognize that each person has to figure out what is going to be the best individual solution.

Frankly, I'm more than a little overwhelmed by all of this. But it has to be done. As my dad would have said, "It's an adventure."

The Other Side of the Coin

2009-08-03T11:26:00.002-06:00

When I was a child, my friends and I would often make decisions with the flip of a coin--heads you win, tails you lose. With MCS it seems that we're always looking at the negative aspects, but yesterday it occurred to me that there is a flip side of the coin, even with MCS, a heads-you-win aspect.

I was looking at the newspaper ads (something I don't usually do, for several reasons) and realized that MCS and celiac disease really simplify my life. There are SO many things that I don't even consider buying. Here's a short list (from the coupon section of yesterday's newspaper):

Old Spice body wash
Old Spice deodorant
Tide stain release
Olay wrinkle cream
Pringles
Head & Shoulders shampoo
Bounce dryer bar
Cover Girl makeup
Downy fabric softener
Dawn dishwashing liquid
Cheerios
Glade spray air freshener
Raid spray pesticide
Scrubbing Bubbles shower foamer
Shout stain remover
fantastik spray cleaner
Windex spray window cleaner

Each of these items represents a whole category of products, some of which I never purchase at all, or, in the case of others, my options are very limited. So, at least when it comes to shopping, my disabilities really do make my life easier.

More on pesticides...

2009-07-29T11:35:00.002-06:00

My chemically sensitive friend Celia would like to add that eating garlic is a great mosquito repellent for her and her family. Of course, it can be a people repellent too, but maybe that isn't such a bad thing. I have found that taking (and/or eating) plenty of B vitamins also helps.

Also, here's a website for information about pesticides on the food we eat:
www.whatsonmyfood.org (a searchable database)

Pesticides, or not?

2009-07-27T10:16:00.002-06:00

I've waited almost a week to write this post to give myself time to calm down. One evening last week, I was sitting in my living room watching television at about 9:30 pm when I started coughing and gagging and generally having trouble breathing. As I stood up to get some help, I saw a truck coming down the street spraying something all over the neighborhood. A quick call to the sheriff's office confirmed my suspicion that it was a pesticide coming out of the back of that truck. Twenty-four hours later, after several emails and phone calls, I had a promise from the county and the private contractor that our street would never be sprayed again and that I would be notified if neighboring streets were to be sprayed.

This was a very scary experience. Never, in the eight years we have lived in this house, has this happened. Nor has anyone ever intimated that it COULD happen. Apparently, back in 1976, a mosquito abatement district was established in our area. However, according to the contractor, this is the first time our particular neighborhood has been sprayed, and it was done only because someone called the county and complained about the mosquitoes. I have written a letter to the county commissioners urging them to find better methods of mosquito control than the use of toxic chemicals (malathion, in this case). If they still deem it necessary to spray occasionally, I have urged them to adopt a written policy for notifying residents in advance and for informing them of the content and dangers of the chemical being used.

There are alternative ways to control pesky insects. The most important is to eliminate all standing water (a necessity for mosquito promulgation). There are several plants, such as marigolds and Thai lemon grass, which, when planted in a yard or garden, serve as natural mosquito repellents. Along the same line, there are a number of natural repellent sprays and creams available which are safe and effective for personal use. Staying inside when the bugs are at their worst, usually in the evening, is also a good strategy. And, above all, don't wear anything with a fragrance (which, of course, no one reading this would do anyway, right?).

I know that mosquito-born illnesses are nothing to laugh about. We do have West Nile Virus here in Montana (though the season hasn't started yet this year) and I have a son-in-law who contracted malaria while in Mexico. In some parts of the world, these diseases kill large numbers of people, so mosquito control is essential. However, I see no need to apply a tourniquet when a simple Band Aid will do, or, better yet, an ounce of prevention. In the case of our neighborhood, it all comes back to residents taking personal responsibility for themselves and their own property. Here and now, the dangers presented by the use of chemical sprays are much greater than any potential danger from mosquitoes.

Proposed Labeling Legislation

2009-07-20T13:57:00.002-06:00

Last Monday, Representative Steve Israel (D-Long Island) introduced new legislation that would require manufacturers of household products to list all ingredients on the product container or packaging. Representative Israel, a member of the House Appropriations Committee, has entitled this proposed legislation "The Household Product Labeling Act of 2009" (H.R. 3057).

The very day that this legislation was introduced, I went to Costco with a coupon in hand for their new Kirkland Signature Environmentally Friendly Liquid Dish Soap. I was dismayed, when I looked at the soap bottle, that the ingredients were NOT listed. Instead, there was a statement that it contained "natural" surfactants and a clean "natural" fragrance. Since I have no idea how they define "natural," I didn't buy the soap. Instead, I came right home and emailed Costco Customer Service requesting an ingredient list for the product. As of today (a week later), I have not received an answer.

I'm not really hopeful that Rep. Israel's legislation will make it into law, but I do have hope that it will bring added attention to the problem of toxic ingredients in products we use every day. This bill has the financial backing of the Citizens' Campaign for the Environment and the Huntington Breast Cancer Action Coalition. They may be small potatoes next to the chemical industry giants, but I applaud them and Rep. Israel for their gumption. We have to start somewhere.

Back in the Groove

2009-07-15T20:10:00.002-06:00

It was good to come home after almost three weeks away. As I walked to the front door I was greeted with the intense aroma of mock orange blossoms. The bushes were just starting to get buds when I left, and I was happy I hadn't missed the full bloom. It's one of the few fragrant flowers I can tolerate, so we planted them outside our bedroom window. Never mind that it's been almost too cool to sleep with the window open the past few nights. I'm happy to add an extra blanket so I can drift off to sleep with a scent that doesn't make me ill.

Exhausted from my trip, I spent the first few days home just trying to catch up on sleep, reading the mail (the snail kind) and enjoying some down time. Finally, today, I awoke with some semblance of energy and desire to get back into the groove of things, back into a routine. But I soon realized that coming home also means climbing back into my hole of social isolation. When I'm in an area with a larger population (which is almost anywhere away from Helena, Montana), there are so many more places to go (like a big farmers' market, an outdoor arts fair, large parks) where I can be with people, yet keep my distance, and be (more or less) safe chemically. These places are interesting and new, unlike the few places I go here (the health food store and Target), which, granted, give me some social interaction, but get pretty boring by the upteenth time I've been there. And granted, all those people in those public outdoor places are strangers. But at least they're people, real live people, not the pretend ones I watch on television or the ones I read about in books.

Then, as I was really feeling sorry for myself this morning, I started going through my other mail (the electronic kind) and catching up on all the blogs I've barely skimmed in the past month. That's when I realized that I do have a social circle, one that goes far beyond the borders of the fourth largest state in the Union. I can't see your faces, but I imagine what you look like, and I can hear your voices in the words that you write. Community is not just a matter of geography, but one of caring and giving and listening and sharing common ground in more ways that the dirt we stand on. So, I'm back. It's good to be home. Thanks for waiting up for me and for leaving the (electronic) light on for me.

Hospitals

2009-07-08T10:08:00.002-06:00

I had a great two weeks with my daughter and her family and the new baby. The day before the baby was born, my mother-in-law fell and broke her femur. It was healing well and she was receiving rehabilitation therapy until a few days ago, when she started having severe pain in that leg. She is back in the hospital now, going through a myriad of tests to determine the source of the pain. And here I am with her, watching her, listening to her, talking to her, helping her navigate the electronic bed, communicating with medical personnel and giving my sister-in-law (her daughter) some badly needed personal time to catch up with her family and her business.

Generally speaking, I go to great lengths to avoid hospitals, both as a patient and as a visitor. Between my chemical sensitivities and my dietary concerns, hospitals just aren’t very hospitable to me. But I have to say, as hospitals go, this mega-medical-complex in the middle of the Salt Lake Valley is not too bad. (Sorry, that’s the closest I can come to an actual complement.)

For one thing, all of the almost 1200 patient rooms are private rooms with views of the mountains. The floors are a light wood-grain laminate and the cabinetry is pine and oak. Artfully framed color photographs of Southern Utah’s redrock country adorn the walls of rooms and hallways, and with the door closed, it’s almost silent (except for the rhythmic hum of medical equipment, of course).

Being a hospital, cleanliness is of utmost importance, yet the typical antiseptic aroma I had come to expect is strangely absent. When the housekeeping person came in yesterday to mop the floor and clean the bathroom, I asked her what kind of cleaning products were used. She was happy to show me that they are environmentally-friendly and fragrance-free. Then, last night, when I helped my MIL change gowns and get fresh bedding, I was pleased to see that the laundry was also fragrance-free and the bedding is all made of cotton.

All day yesterday a parade of people—nurses, aides, social workers, chaplains—came in and out of the room, and not one of them carried any fragrance along with them. By evening I had forgotten to even be concerned about a chemical reaction, which allowed me to focus on my MIL’s needs, rather than my own.

Then, at 7:30 pm, the night shift nurse walked in to introduce herself. The waft of strong perfume that came with her left me feeling like I had run into a brick wall. All I could do was back away as I gasped for breath. As she gave me a questioning look, I very bluntly told her that I have chemical sensitivities and I could not be in the same room with her because of her strong perfume. I then expressed my surprise that she, a registered nurse, would wear a heavy scent, especially in a facility that I had deemed to be fragrance-free and working with people whose immune systems have already been compromised by injury and illness.

The nurse did not give me a verbal response, but the look on her face was not one I would describe as friendly. My MIL was oblivious, fortunately, and, since I was just preparing to leave for the night anyway, I made a quick and convenient exit. I only hope that if I am still here this evening, the same nurse will not be on duty.

Most hospitals have a public relations person, patient advocate or ombudsman. So one of my goals for today is to find that person’s name so I can send a written letter of concern after we are done here. Of course, I will also register the many positive aspects of our experience, which surely outweigh this one negative. I hope I can be more tactful than I was last night, but still find a way to drive my point home, that this one nurse’s behavior poses a danger to patients (and their visitors) and is so incongruous with the rest of the institution.

Since my experience with hospitals is very limited, I would love any suggestions of how to approach this one.

A New Grandson

2009-06-27T22:06:00.002-06:00

I haven't posted for several days because I've been in another state welcoming a new grandson into the family (and helping his family adjust to being four, instead of three). This baby is adopted, but his birth mom and his adopted mom (my daughter) have known each other for years. Both of them love this little boy and want what is best for him. Both have worked hard already to protect him from toxic substances and dangerous environmental influences.

This healthy little boy lives in a home where natural, unscented laundry and cleaning products are used. For however long he needs them, his soft little bottom will be cradled in cushioned cloth diapers. He sleeps wrapped in 100% cotton flannel swaddling blankets (made by Yours Truly), and, though he does get his nourishment from baby bottles, they are, of course, BPA-free. His parents can't put him in a bubble where nothing dangerous will ever reach him, but they will do whatever they can to ensure that he has the best chemical-free life possible.

Of course, it goes without saying, that no child will be more loved.

New Data on the Prevalence of Fragrance Sensitivity

2009-06-16T12:41:00.002-06:00

An article in the March 2009 edition of the Journal of Environmental Health summarizes the results of a study done over several years' time concerning the number of people adversely affected by the chemicals in fragrances. Authors Stanley M. Caress and Anne C. Steinemann (an environmental engineer at the University of Washington) concluded that 30.5% of the general population report scented products on others to be irritating. That's nearly one in three people. So much for those claims by the fragrance producers that we will be more attractive to others if we use their products.

Anne C. Steinemann is the same scientist who conducted extensive research into the chemicals found in air fresheners and their effect on people who use them (see "Fragranced consumer products and undisclosed ingredients" in the January 2009 issue of Environmental Impact Assessment Review, pp 32-38). In that research she found that the largest contributors of VOCs to human exposure come from sources closest to us, particularly consumer products, most of which are unregulated and untested for human safety.

In their combined research, Caress and Steinemann found that 19% of people have adverse health effects from air fresheners, and 10.9% of people report irritation from scented laundry products which vent outside in residential areas. Symptoms reported include headaches, breathing difficulties and neurological ailments. These percentages reflect the general population. Among people with diagnosed asthma and/or chemical sensitivity, the percentages are much higher for "adverse health effects or irritation from fragranced products."

None of this comes as any surprise to those of us who struggle with chemical sensitivity, but it's nice to have some scientific research to back up what many consider only anecdotal evidence.

My Black Thumb

2009-06-10T11:42:00.002-06:00

Some people are said to have green thumbs; plants thrive in their care and they can grow anything. But I have a black thumb. If the care of our household plants (both inside and outside) were left up to me, they would all wither and die before I even noticed. (This has actually happened; it's not just speculation.) However, now that I've moved my home office to a warmer, sunnier room, I'm going to try adding plants again. An article that came through my email last week convinced me that it's worth the effort.

According to this article in The West Australian, new research indicates that even very small plants can improve the quality of indoor air by absorbing almost 100% of VOCs (those nasty volatile organic compounds derived from fossil fuels) found in the average home or office. In addition, it was found that "any plant will perform as well as others," according to Professor Margaret Burchett of University of Technology Sydney. She went on to say that plants' "role in removing CO2 from the air and adding oxygen means that they are the greenest way of improving indoor air quality."

So I found a pot in the garage (undoubtedly left over from some gift plant which met its demise under my hand), and I'm going to find a plant variety that doesn't need much care. An honored place in my new office is awaiting its arrival.

Au Naturelle

2009-06-02T15:29:00.002-06:00

Yesterday one of my daughters, whose diet is even more restrictive than mine, exclaimed in frustration, "Sometimes I think it would be easier to just NOT eat!" I understand her sentiments exactly and often feel that way myself, not only about eating, but about other activities as well, including dressing. On days when my back injury is bothering me or I'm having an arthritic flare-up, clothing can be so uncomfortable. Add to that the challenge of buying clothes that aren't laced with chemicals or someone else's perfume, and one is almost persuaded to just go, as the the French would say, au naturelle.

Fortunately (not just for me, but for all my friends and family), I have been able to find other options than running off to join the Naturists. My most recent discovery is a small company in Seattle called Decent Exposures, which sells apparel for women and children (sorry, guys, you're out of luck) made from organic cotton or a cotton/polyester/Lycra blend. They are most well-known for their uniquely designed "unbra." All of their clothing is made-to-order, so they can accommodate odd shapes (like mine). Check them out at www.decentexposures.com.

For years, I have purchased most of my clothing second-hand, but my last couple of experiences with that have been less than positive, as one of our local thrift stores has started running all used clothing through a dryer with scented dryer sheets. We've quit shopping there, but we still run into the problem of smelly clothes, even if we buy them new. This brings me to my next great discovery, grapefruit seed extract. A small bottle of this concentrated liquid seems a little pricey, but just a few drops in the wash water with a batch of clothes is sufficient. I have found that if I use this in the wash, with or without baking soda, and then hang the suspect piece of clothing out in the sunshine to dry, I can eliminate all but the worst chemical/perfume odors.

The truth is that though I have a closet full of clothes, I really only wear about a half dozen outfits all the time--cotton knit pants with cotton sweatshirts in the winter and t-shirts in the summer. After all, comfort is the ultimate luxury.

Distractions

2009-05-28T12:08:00.002-06:00

It seems like everyone is on a constant quest for information that will make life easier/more comfortable/longer/richer/anything-you-want-to-add. I'm no different. I'm on numerous email lists, and I spend part of almost every day reading online news, magazines and blogs. My life is better because of much of the information I have gleaned from these and other sources; however, sometimes all that information becomes overwhelming and what I really need is Distraction (yes, with a capital D).

Distraction is the reason why we have satellite television, shelves full of books and a subscription to Netflix. I appreciated all of these this past week, when my old back injury flared up again and I spent many hours curled up with alternating ice and heat packs. TNT, USA and Sleuth channels came to the rescue with all of my favorite crime-solving series (NCIS, JAG, Law and Order, Bones, etc.), but I can only watch so much of that stuff before my brain becomes as mushy as the tissue on the autopsy tables. So I started looking further afield, and I have a couple of recommendations for anyone else looking for similar Distraction.

I am three chapters away from finishing the book, Three Cups of Tea, by Greg Mortenson and David Oliver Relin. I really can't recommend this book highly enough. The story of a mountain climber turned humanitarian, it helped me get out of my own little world and see the suffering that goes on in others' worlds. More importantly, the authors demonstrate that even little efforts can change people's lives. To top it all off, the story is so compelling, I've been able to read for hours at a time (a key requirement for Distraction reading) and it is beautifully told. A good story well told--it doesn't get any better than that.

On Monday night, DH (who had been working very hard to take care of me and also get some needed house and garden work done) sat down with me to watch our latest Netflix movie, Last Chance Harvey, a quirky story about two seeming misfits, one American and one British, whose chance meeting in London proves that life does sometimes give us second chances. Short, well-written and well-cast (Dustin Hoffman and Emma Thompson), it really fits the bill for quality Distraction.

I'm back at my desk today, trying to dig out through the piles, but come the weekend, I will again be looking for more Distraction. Any suggestions?

Carpet Issues

2009-05-21T16:25:00.004-06:00

Sitting on my desk for several days has been Green America's most recent newsletter with its feature article entitled, "Detoxing Carpeted Floors." Immediately I thought I should post about this. Yet, I hesitated, because the whole subject of carpeting brings up some less than happy feelings for me. It was the installation of new carpet, along with other remodeling, in our church building last year which still prohibits me from attending meetings with my own congregation. I had a lot of bad feelings toward the "people in charge" at the time, and talking about it only brings those feelings back to the surface.

However, my bad feelings have done nothing to change the situation, so I need to do something positive and help other people understand what CAN be done to lessen the impact of new flooring. So here are some suggestions from Green America:

1) If possible, don't use carpet at all. Alternative flooring includes hardwood, cork, bamboo or natural linoleum. Just make sure than any finishes you use on these floors are non-VOC. (We put hardwood flooring in part of our last house and used a non-VOC finish with no problem.)

2) Use safer carpeting. Look for natural fibers like wool, sisal, jute or seagrass. There are also companies making low-VOC carpets out of recycled nylon. Other low-VOC carpets are available from several different major manufacturers. Be sure to check the content of the carpet backing (which holds the carpet together). Natural latex or jute are good choices (unless you are allergic to latex, of course).

3) When the carpet is installed, make sure it is tacked down, not glued. Glues are the main source of VOCs in carpet. If glue must be used, there are low-VOC options.

4) Look for carpets that are not treated with toxic coatings. The Green Label from the Carpet and Rug Institute (CRI) prohibits the use of some VOCs (but not all).

5) Look for carpets that are undyed or vegetable-dyed.

6) Use padding made from recycled nylon or recycled wool.

No matter what kind of carpet you install, there are things you can do to facilitate outgassing. Here are some recommendations from Green America:

1) Coat new carpets with an eco-friendly carpet finish like American Formulating & Manufacturing/s (AFM) CarpetSeal. This seems counter intuitive, like adding more chemicals, but I am told it works to contain the VOCs in the carpet for up to a year or through five shampoos.

2) Use a HEPA vacuum and vacuum often.

3) Shampoo carpets carefully with non-toxic products. Green America recommends companies that use carbonated water, such as Zero Residue and ChemDry.

4) Before carpet is installed, have the company roll it out in their warehouse for at least 72 hours before installation.

5) Have windows open while carpet is being installed and for at least 72 hours afterward. It is also effective during this time period to turn up the heat and have fans going. Heat and air circulation will greatly speed up the outgassing process.

6) Insist that family and all guests remove their shoes as soon as they walk in the door. Shoes track in pesticides and other chemicals, which stick to and build up on the carpet.

According to the nonprofit Healthy Child, Healthy World, "Although offgassing from carpets decreases significantly several months after installation, carpets can emit these fumes for as long as five years." However, there are things that can be done to make carpeting a healthier floor covering option. It takes a little more effort, but the results can be lifesaving.

And for the record, I personally prefer carpeting to hard floor surfaces, especially with Montana's long cold winters. We have followed all of the above suggestions, and I don't have a problem with the carpets in our home.

Fibromyalgia Awareness Day

2009-05-12T11:01:00.002-06:00

Today, May 12th, has been declared Fibromyalgia Awareness Day. Led by the National Fibromyalgia Association, groups all over the United States are hosting activities in their communities to educate people about this chronic pain disorder which directly affects an estimated 10 million men, women and children in the U.S. and indirectly affects millions more of their family, friends and health care providers.

Fibromyalgia is a chronic immunological disease with symptoms which include chronic widespread pain, abnormal pain processing, multiple tender points, fatigue and sleep disturbances. It is one of a group of closely related immunological and neurological diseases, which also includes MCS (multiple chemical sensitivity). Many people with MCS also suffer from fibromyalgia.

I know the effects of this debilitating disease firsthand. I watched my mother suffer the pain of fibromyalgia for several years near the end of her life, and I myself have struggled with it to a lesser degree. Mom really expressed how she was feeling a few years before her death at a family reunion. One of her grandchildren mentioned the possibility of another reunion in another five years, and her reply was, "Oh, I hope I don't live that long. I can't imagine being in this much pain for five more years." The grandchild, to say the least, was a little shocked and dismayed, but I have since had some days when I have truly understood Mom's feelings.

I'm one of the lucky ones, however. Though I have days when I hurt so badly that I just want to crawl into a hole and disappear, those days are the exceptions. Most days, especially when I haven't had any recent chemical exposures, the pain is just a dull ache to which I have become accustomed. But I know people for whom the pain of fibromyalgia is completely disabling. They are unable to perform the most simple of daily tasks.

When Mom was first diagnosed with fibromyalgia, it was relatively unknown. Many doctors didn't even believe it really existed. Some still don't want to acknowledge it as a true disease because, like other similar maladies, it doesn't fit into their narrow definition of "disease." That doesn't make it any less real for those for whom it is a constant companion. Perhaps the best thing the rest of us can do is speak up about it when we can, support education and research and show compassion (and validation) for those who suffer.

For more information, visit the NFA website at www.fmaware.org.

Dryer Sheets

2009-05-09T10:05:00.000-06:00

I know I've blogged about this before, but until there are no more of these evil things in use, I will just keep harping on it. Dryer sheets (you all know what I'm talking about) may contain any or all of the following: alpha-terpineol, linalol benzyl acetate, camphor, benzyl alcohol, limonene, ethyl acetate, pentane and chloroform. These chemicals are approved for this use by the FDA because you wear but don't eat them. However, you do absorb them through your skin and breathe them into your respiratory tract. If you go looking, you will find ample warnings about human exposure to these chemicals. Yet, these seemingly innocent little dryer sheets are used by even the most intelligent of people, because they either don't understand or don't believe the dangers, and they don't know that there are some very good alternatives for preventing wrinkles and static cling in your laundry.

Personally, I use the dryer balls which you can now buy at almost any grocery store or at Bed, Bath and Beyond. But if they just don't work for you, or your dog thinks they're chew toys, here are some other alternatives:

Wash and dry synthetic clothes separately from your other laundry, and/or remove them from the dryer before they are completely dry and hang them up.

If you forget to take your clothes out out before they are really dry, try running the garment over the edge of a metal hanger. (I haven't actually tried this one, but I'm told it works.)

Add half a cup of clear vinegar to your wash water.

If it's the smell you can't live without, go for the real thing. Put a little essential oil on a rag or put herbs or flowers into a drawstring tea bag and throw into the drier with your clothes.

There is a new product, which I haven't tried, that is a piece of fabric which naturally prevents static in your dryer--available at natural food stores.

If protecting yourself and your own family aren't good enough reasons to stop using dryer sheets, do it for me, and people like me, who can't walk outside in our own neighborhoods because we become deathly ill from our neighbor's dryer exhaust. We're the canaries in the coal mine in which we all live.

[Much of the information for this post came from Jeanne McCartin's article, "The Dangers of Dryer Sheets" at www.seacoastonline.com, April 30, 2009.]

Good News! Fragrance-free Signs

2009-05-07T09:54:00.002-06:00

There was some very good news on the home front this week in the efforts to create fragrance-free church buildings (or at least fragrance-free areas) in Helena, Montana. For months my DH (Dear Hubby) has been traveling between church buildings on Saturday afternoons to put up and take down fragrance-free signs, because we were told by the local Church Facilities Management (FM) person that we couldn't put up permanent signs. With two buildings here in Helena and two more in outlying areas, this has become a time consuming task, but he has done it willingly and without complaint.

I, on the other hand, have become impatient with the whole sign issue. There seems to me to be a significant difference in people's behavior when the signs are up as opposed to when there are no signs in sight. So, in my frustration, I wrote a letter to the Physical Facilities Department of the LDS Church in Salt Lake City.

Last Friday, I received an email from the FM person over our area informing me that they had received my letter and they were working on a solution to provide us with permanent signs, both on the outside doors and beside the doors to the chapels of our buildings. Of course, DH has been given the job of arranging for those signs and getting them posted, but he is happy to do it, and I know it will be done in the best way possible. That's the only way he does anything.

May is MCS Awareness Month

2009-05-04T10:13:00.002-06:00

Twenty-five governors and mayors (including the governor of Montana) have issued proclamations to raise awareness about multiple chemical sensitivity and toxic injury during the month of May. Of course, we should be pushing for education and awareness every month and day of the year, but an awareness month helps us focus public attention on our very important message.

Here are some interesting facts you might want to share with family and friends:

At least 45 million people in the U.S. report sensitivity to various chemicals.
About 3 million Americans are diagnosed with MCS.
MCS affects people of all ages, economic status, race and both genders.
Chemicals that people with MCS react to are toxic and affect everyone to some extent.
Annual expenditures for healthcare and lost productivity due to MCS are estimated at $71.8 billion dollars (that's per year).

Of course, facts don't really tell the human story of the many individuals whose lives and livelihoods are limited by this debilitating condition. We need to try hard to NOT be invisible. That doesn't mean we need to be obnoxious, but we can speak up for ourselves.

For more information on MCS awareness and facts to back up our claims, visit www.mcs-amerca.org.

Graduation

2009-04-30T19:19:00.002-06:00

We have been back from Utah for four days now, and I am just feeling like I'm catching up with life. (Or is it catching up with me?) Why does any change in the daily schedule exhaust me so? I must be getting old.

The graduation was everything we wanted it to be and more. Our daughter glowed as she walked across the stage to receive her diploma, lifting a fist in a triumphal wave to the crowd. It was a moment to warm the heart and wet the cheeks of any parent. Oh, how I appreciated being there to see it!

There were actually two graduation ceremonies for us to attend, the commencement for the entire university on Thursday afternoon and the separate college convocation on Friday morning. With over six thousand graduates, you can imagine how crowded the commencement was. We had good seats, however, albeit behind the podium. And I thought I was safe from fragrance until two boys sat down behind us. PHEW! But we had a whole row for our family, so I was able to move to the other end, and, with the help of my "I Can Breathe!" mask, I made it through most of the program. Near the end, when two little grandsons were getting restless, I offered to take them outside for a badly needed breath of fresh air.

At the convocation on Friday morning, there were less than half as many people, and no one sitting near us with heavy scents, so I survived without the mask. A couple of trips out with the same two grandsons helped too, of course. The weather was beautiful for taking pictures, the trees all in bloom and tulips and daffodils everywhere. And oh, the warmth. I wanted to just wrap it up and bring it home. It has snowed here every day this week, but the memories of this experience will keep up warm for many days to come.

Perseverance

2009-04-21T12:30:00.003-06:00

Perseverance--anyone with a disability understands the meaning of this word and how vital a commodity it is when life presents us with chronic challenges. So often we feel that we take two big steps backward for every baby step forward, but perseverance keeps us going. As it says in Ecclesiastes 9:11, "...the race is not to the swift, nor the battle to the strong...but time and chance happeneth to them all."

This week we will attend the college graduation of our oldest daughter. Her diploma will be a testament to her perseverance. Her quest for this degree began in the fall of 1994, when, at the age of seventeen, she entered a prestigious university on an academic scholarship with the dream of becoming an elementary school teacher. By the end of her first week of classes, she realized that where she really belonged was in the art department and so switched to a major that demanded many extra hours of time in studio.

Then, two and a half years later, she married the boy next door, whose college major was not available at the same university. Not to be deterred, only delayed, this daughter-of-mine took what classes were available at his college and, when he finished and they moved on, kept going with correspondence courses, necessitating yet another change in major to an emphasis in history. Now, these fifteen years after she began, she is receiving the long-sought-after diploma, and we are going to give her all the celebration she deserves. In those fifteen years, she has had five pregnancies, three live births (including an emergency C-section), a husband with cancer, a child with chronic health problems, another child with severe allergies and severe ongoing health problems of her own. She currently homeschools three boys and volunteers in several church and community organizations.

My daughter's grandmother (my own mother) started college at the age of sixteen and finally received a bachelor's degree at the age of sixty-three. And a great-grandmother, a Danish immigrant, received her college degree at almost that same age. So this daughter comes from a long line of determined women who understood what it means to persevere toward a personal goal, even if it takes many years to accomplish. Though she certainly has had much encouragement and support along the way, my daughter would not be standing there at the podium this week in navy blue cap and gown were it not for her own strong will, her own perseverance.

Housekeeping Matters

2009-04-18T10:56:00.002-06:00

Okay, so this post isn't exactly about housekeeping, more like desk-keeping. I've been buried with work the past couple of weeks and the pile on my desk for possible blog posts has become quite obnoxious. I want it to go away. So I'm going do it all in one fell swoop. What follows are notes from the most important papers in my pile.

A great new website (http://thetenthparadigm.org/), created by Dr. Martin L. Pall, Professor Emeritus of Biochemistry and Basic Medical Sciences at Washington State University, gives new scientific validation to MCS and other similar diseases. Even if you don't have a scientific background and can't understand all the information on the site, you will find much that will encourage you and may improve your life. He includes the protocol he has developed for the treatment of these diseases, much of which can be done with over-the-counter food supplements (which he lists in detail).

CNN reported this week that the Atlanta airport is in the process of implementing a new keep-the-airport-clean project that uses music and scent to encourage everyone to keep the airport "opening day fresh." Quoting from the article, "...the airport recently launched the initial phases of a program that uses a scent called 'Breeze' to help enhance visitors' mood. [The scent] uses a variety of different notes, including vanilla and a little lavender." Needless to say, I find this just apalling and more than a little scary. Please, please, send an email to the Atlanta airport authority protesting this action (http://www.atlanta-airport.com/ -contact-customer service). There's no guarantee that emails from us will change this program, but they need to understand that this is not acceptable and could be a liability problem for them.

In my ongoing campaign to make the world safer for children, I site a new study by the Campaign for Safe Cosmetics which documents the "widespread presence of both formaldehyde and 1,4-dioxane in bath products for children, including baby shampoos, bubble baths and baby lotions." Some of the most contaminated products they found included: Johnson's Baby Shampoo, Sesame Street Bubble Bath, Grins & Giggles Milk & Honey Baby Wash (Gerber), Huggies Baby Wash, L'Oreal Kids, Mustela, Suave Kids, Baby Magic Baby Lotion and American Girl shower products. For more information go to http://safecosmetics.org/article.php?id=414.

And last, but certainly not least, go check out the new Canary Report website at http://www.thecanaryreport.org/. It will educate, inspire and entertain you. Kudos to Susie. You are my MCS hero.

Happy Spring to everyone.

Disability Myths

2009-04-09T09:00:00.002-06:00

In a recent post I talked about the LDS Church website for and about members with disabilities. One page of that site discusses myths about members with disabilities. Some of these myths definitely apply to people with chemical sensitivities. For this post, I'll start with the first one:

There are very few people with disabilities in the average ward [congregation].

This myth can be dispelled by a few statistics relating the incidence of disability in the general U.S. population. According to government agency statisticians (see the website for references), 22% of adults in the U.S. report having a disability. Unfortunately, there have not been very many studies done on the incidence of MCS in the general population, but I found two. A 1997 study done in New Mexico found that 16% of the respondents were "unusually sensitive to everyday chemicals" and 2% had been diagnosed with MCS. In a study done in Australia in 2002, 24.6% of the respondents said that they or their children regularly feel unwell when exposed to certain chemical odors or smells, and 2.9% have been medically diagnosed with a chemical sensitivity.

If you take these statistics and apply they to an average LDS ward with 400 members, you would expect to find 88 members with some type of disability. You could also find eight to twelve members with diagnosable MCS and anywhere from 64 to 98 others who become ill in the presences of some chemicals. This is not an insignificant number of people.

So why are we so unaware of all these people with disabilities? The Church website gives two reasons. First, "most people who have disabilities cannot be identified by their appearance." Second, we don't see many members with disabilities because they simply aren't attending church meetings. Both of these reasons hold true for members with MCS.

Traveling

2009-03-31T11:02:00.002-06:00

We spent this past weekend in Washington visiting family and a new baby (she's beautiful!). It was a quick trip, which always aggravates my fibromyalgia, but I am feeling much better today, after a good night's sleep in my own bed. I am so glad to have my travel version of the Cuddle Ewe, but it doesn't take the place of my full size one at home, which, of course, tops a luscious foam mattress.

If you have fibromyalgia or arthritis and are unfamiliar with the Cuddle Ewe wool mattress topper, you really should take a look at it (just google Cuddle Ewe). It's expensive, but I can't tell you what a difference it makes. The travel version comes in it's own carrying case, and I made a washable cover for mine out of a sheet. (The Cuddle Ewe itself is not washable.)

Beyond the problem of finding a comfortable bed, the chemical sensitivities are always an issue when traveling, particularly when it comes to lodging. I have great family members, who keep their homes safe enough for me to come stay, but motels are another matter. We knew we would have to stay in a motel at least one night on this trip, so I got on the phone well in advance to see what could be done to accommodate my needs.

Ideally, I like to stay in a place that advertises itself as fragrance-free or chemical-free. There are really quite a number of bed and breakfast inns that fit this description, but mostly in Canada or on the east coast of the U.S.

We were lucky this trip. We spent Friday night at the Post Falls, Idaho Sleep Inn. It is entirely non-smoking. The manager was familiar with chemical sensitivity and went out of his way to be accommodating. I called almost a week before our stay and made a reservation for a room which would not be used in the interim time period. The best part about the room was that it had a window, which I opened as soon as we arrived and left open a crack through the night. I ran into only two problems at this motel. They have an indoor swimming pool just down the hallway from the main lobby, so the lobby smelled slightly of chlorine. However, they had the lobby doors open to the outside, so that helped. The other problem I encountered was when I got out of the shower the next morning and grabbed a towel, which had a slight scent. (It goes without saying that I never use soap or any other personal care products supplied by a motel.) I will remember to bring my own towel next time.

On our way home Sunday night we got stuck in a snow storm and couldn't make it over the last pass to get home. So we stayed in the Best Western at exit 101 in Missoula, Montana. I had not called ahead on this one, so I was a little apprehensive, but it turned out to be a very positive experience. This motel is all non-smoking, and I couldn't smell anything at all when I walked into the lobby. Again, I asked for a room that had not been used for a few days, and then I went and looked at the room before paying for it. I sniffed the sheets and the towels and could smell, ahhh, nothing at all. This was the best motel room I have stayed in for a long time.

Of course, there's nothing quite like home sweet home, but it's nice to know that I can get away once in awhile.

New Disabilities Web Site

2009-03-20T17:51:00.001-06:00

This week I spent some time searching the new disabilities web site published by The Church of Jesus Christ of Latter-day Saints. Designed to provide help for people with disabilities and people who serve them (families, teachers, friends, church leaders), the site is a treasure trove of information on disabilities in general and on some specifically. Included are scriptural passages about caring for each other, as well as specific ways that others can meet the needs of those with disabilities, enabling them to serve and fully participate in the church community.

Unfortunately, chemical/fragrance sensitivities are not addressed specifically on this site. However, much of the information given is applicable. There is a place for feedback that enables you to send an email (a short message) to the site managers. After looking through the site, I took the opportunity to send a message about chemical sensitivity and the unique problems it presents to church members (both those with it and those who should accommodate it). I may never hear back from anyone at the site, but it does feel good to know that I have said something.

For anyone who cares about people with disabilities (which I hope is all of us), this is an excellent site. You can take a look at www.disabilities.lds.org .

Random Thoughts

2009-03-16T19:34:00.003-06:00

I have been caught up in a writing project and haven't kept up with the blog world. Coming up for air, I have just some random thoughts.

I have been making some connections with other chemically sensitive people, through this and other blogs and through the MCS-America email list. In so doing, I am continually amazed at the difficulties so many people face and the grace with which they do so. My heart aches for young mothers who can't attend their children's school programs, for talents that go unshared because of the isolation of MCS and for devout church members who can't even attend a regular sacrament service, let alone a potluck dinner or family funeral. Yet they carry on with courage worthy of any arctic explorer or war hero. I will be forever thankful for the miracle of cyberspace that allows me to reach beyond my caged existence and enter into their worlds.
Yesterday (or the day before; I have lost all track of time this week), I read of a study which concluded that people who wear face masks in heavily polluted areas have a lower risk of heart attacks. In some big cities, like Shanghai, air-filtering face masks are common, but until this study, no one was sure if they were really doing any good. I have to admit that I have been sceptical, but after the experience I had today of traveling a mile or more behind a big pickup truck and breathing in its exhaust (Montanans and their big trucks--it's a culture thing), I'm ready to try the mask. The article suggested that the best masks are those that are designed to filter out dust, like construction workers wear. However, I haven't a clue where to buy such a thing--Home Depot? Lowe's? Anyone out there ever use one of these?
We had yet ANOTHER storm blow in here last night. It is not as cold as the -17 F we woke up to one day last week, but it came with plenty of snow. I was not a happy camper as I ventured out into it to the health food store. There I ran into an old friend, and as we were talking she glanced out the window and exclaimed with delight, "Oh, look how beautiful it is, all that snow coming down!" The flakes were those big chunky ones that float, rather than fall and cover everything so completely that even dirty Montana cars look like giant marshmallows. Even I, so VERY tired of winter, had to admit that it had its own kind of beauty... sort of. T.S. Eliot wrote: "If winter comes, can spring be far behind?" Ahh...words to live by (this time of year anyway).

International Women's Day

2009-03-08T13:27:00.002-06:00

Today, March 8th, is International Women's Day, celebrated worldwide. (In some countries it's actually a national holiday!) So Happy Day to all of you wonderful women out there!

The whole month of March is Women's History Month here in the United States. The theme for this year is "Women Taking the Lead to Save our Planet." The National Women's History Project has a great website at www.nwhp.org , with resources for use in homes, schools and communities.

Women's history and a healthier environment are two subjects near and dear to my heart. Combining them into one month of activities and celebration? Wow, that's cool.

Little Miss Perfect

2009-03-05T10:44:00.003-07:00

I was flipping through the channels on Directv last night (chilling out after a long day), and I came across a show called "Little Miss Perfect." This reality TV show chronicles the week before a little girl beauty pageant (Little Miss Perfect) in the lives of two of the contestants. In this particular episode, the two featured children were about six years old.

Now, I have objections to all beauty pageants (regardless of the age of the participants) on many levels, but I'll leave most of that discussion to a different place and a different time. The thing that was most striking as I watched what these girls go through was the use of make-up and hair styling products. Little girls as young as three years of age not only had their faces covered with everything from eye shadow to blusher to thick foundation, but they also had their entire bodies (or at least everything that wasn't covered by the scanty bikinis they wore in the competition) sprayed with a false tanning solution. Then, after all that, their hair was teased and sprayed repeatedly to produce bigger-than-life hairdos.

As I watched this purposeful poisoning of innocent little girls, I wanted to reach through the television and strangle a few necks. I am aware that the whole child beauty pageant business has been under attack recently (and rightly so, I believe), but I haven't heard any of those attacks address the very real physical danger to these children from toxic chemical exposure. Yet there it was, right before my eyes, plain as day. I'm willing to grant that much of this is due to just plain ignorance on the part of many of the adults, and I know that I have a different perspective on chemical exposure as I look at it through MCS eyes, but that does not excuse what I see as blatant child abuse with the potential of causing irreparable physical (not to mention psychological) damage.

Government

2009-03-01T10:15:00.003-07:00

I have mixed feelings about just how much government (i.e. legislation) should be involved in my life, but I ran across these two quotes this past week, and they gave me something to think about.

The moral test of government is how it treats those who are in the dawn of life, the children; those who are in the twilight of life, the aged; and those in the shadows of life, the sick, the needy and the handicapped.
Hubert Humphrey

...human rights exist independent of governments--they are not granted or taken away by those in power--only pretected or violated.
Christine Kaufman, Montana State legislator

African Treasures

2009-02-26T10:20:00.003-07:00

I meant to do a blog post about this during the holidays. I even wrote myself a note about it, which I just found, which tells you how often I get through the pile on my desk.

Anyway, better late than never!

We discovered this wonderful company that imports handmade, natural fiber baskets from Africa. The owner of the company, Umoh Essiet, is from Ghana, but she now lives here in Helena, Montana (small world). She makes regular trips to Africa to get these baskets, which are made by women who receive an honest payment for their wares. Umoh has a room full of these baskets in her home, and we were overwhelmed when we went to see them (by awe, not by chemicals; the baskets are all natural with no chemical finish applied).

These baskets are BEAUTIFUL. What else can I say? Useful too!

Needless to say, we had to buy several to give as gifts, and, when we get our tax refund, I will be heading back to buy something for myself.

Before we left, Umoh insisted that we learn the name of the place where many of the baskets are made. It's called Bolgatanga (pronounced just like it looks) in the northern part of Ghana. So we not only came away with beautiful baskets, but received a culture lesson too.

The really good news is that you don't have to come to Helena, Montana to see these baskets (though it's a great place to visit, in the summertime). You can see (and purchase, of course) at www.africantreasuresonline.com .

[Shameless commercialism strikes again.]

Cabin Fever

2009-02-20T15:47:00.001-07:00

I haven’t posted for awhile because I’ve been buried in a family history project, writing the stories of my female pioneer ancestors. My great grandmother, for whom I am named, lived the first eighteen years of her marriage in a one-room (about 8’ X 12’) log cabin in northern Utah. She had seven children during this time period, and her sister’s children were often in and out of the cabin as well. Her experience gives new meaning to the term “cabin fever.”

Even as I was writing my grandmother’s story last week, I was suffering from the malady myself. Montana winters are long and cold. Even in the best of weather, it’s difficult for me to get out much, always trying to time my outings when few people will be on the roads and in the stores, hoping that I won’t have a chemical reaction and have to get myself home in a befuddled state of mind. And there are only a few stores in town that are safe for me anyway (Macy’s and Dillards are definite NO-NOs). But winter only adds more obstacles, like the cars running in the grocery store parking lot (happens a lot here) and those scented candles left over from the holidays. And this is all assuming that I feel up to going out in the first place. When all is said and done it’s just easier to stay home.

Hence the cabin fever.

I’m certainly not the first person to suffer from this ailment. It’s a common complaint of anyone who deals with chronic illness or disability. At least I can do something about it SOMETIMES.

Like today. I went out to drop off something to my daughter’s family and ended up at a local thrift store. With few people in the store and nothing really pressing at home, I whiled away more than an hour looking at old LPs and antique dishes (two of my weaknesses). Ahhh…the cure for cabin fever, for today at least.

Energy Smart, Air Smart

2009-02-06T21:46:00.002-07:00

Almost twenty years ago we built what we thought was our dream home on an island in the Puget Sound. With a beautiful view out over the water and neighboring islands, it was a little bit of paradise. Early in the building process, our contractor didn’t have to twist our arms to convince us to build what was then called an “Energy Smart” home. With super insulation in attic and walls, energy-saver dual-paned windows and a room-by-room heat/thermostat system, we would not only save money on our electric bill, but we would pick up a tax credit as well. Smart, right? Not so much.

Shortly after moving into this beautiful new home, we realized that the house was TOO air-tight. I had had problems with chemical sensitivities previous to this time, and we had tried to be careful in selecting the products that would go into our home, but we discovered too late that we had made numerous mistakes, not the least of which was the decision to energy-seal our home. It was as if the whole house was inside a big plastic bag, with no way for fresh air to come in or stale air to go out (what people in the trade call “air exchange”). Thus we found ourselves opening those new energy efficient windows in the middle of a rainy Northwest winter and drilling three-inch holes in the outside walls to install air outlets in every room (they looked somewhat like small smoke detectors), which could be opened and closed with a long dangly cord. (So much for my decorating scheme.)

Four years later we built another home. It didn’t have the killer view, and it was a fraction of the size of the first house, but it did have a ventilation system built into it which could completely exchange the inside air with outside air in a matter of a couple of hours instead of several days. It also sat in the middle of the woods, where the trees and plants of the forest could generate clean air for exchange. And it was built with the simplest, most chemically-free products we could find (a topic for another post).

The moral to this story? Somewhere between trying to save the planet (one of my favorite causes) and reducing our dependence on foreign oil, we have to find a way to build healthy homes for humans to live in. It IS possible, and it doesn’t take a lot of compromise or cost a lot of money (in fact it was cheaper). We just have to be smart.

Well, Duh

2009-01-31T10:25:00.003-07:00

"BYU-Harvard Study Finds Cleaner Air Extends Lifespan" This is the title of the lead article in the most recent BYU online newsletter. Researchers at Brigham Young University and the Harvard School of Public Health have come to this conclusion after an extensive long-range study of 51 U.S. cities. Specifically, the study cites that on average, the life expectancy of people in these cities has increased by five months in recent decades. In the (previously) most polluted of these cities, cleaner air added about ten months to the average lifespan.

Now I'm not a scientist, and I don't need extensive scientific studies to convince me that air pollution is bad for all forms of life. So all I can say to a study like this is "well, duh." However, I do understand that backing up our claims with sound scientific research only furthers our cause, and for some people, this is the only way they will be convinced.

Yesterday I spent the afternoon at our state capitol listening to legislators debate various bills and resolutions, some of which directly apply to this argument for clean air. There is currently a bill being reviewed by a Montana State Senate committee, which would set the same emission standards for automobiles sold in Montana as those in California and about 14 other states. [These laws are not in force in these states because the EPA, under the direction of the Bush administration, stopped them, but they are currently under review by the EPA under the new administration and will likely go into effect soon.] This legislation is seen as the most cost-efficient way for the state to clean up its air. As an added bonus, the vehicles sold under this law would be more fuel-efficient and thus less expensive to use, saving the consumer money in the long run. And for those who just have to have their big rigs, there are exemptions for trucks and some SUVs.

The prospect of cleaner air is reason enough for me to support these types of laws. And, as science has now proven, cleaner air is good for us. Who wouldn't want to add five more months to her/his life?

Amputated Lives

2009-01-29T10:13:00.002-07:00

Alison Johnson graduated summa cum laude from Carleton College and went on to receive a master's degree in mathematics at the University of Wisconsin. She also studied at the Sorbonne in Paris on a National Science Foundation Fellowship. Alison was thirty-five years old when she developed chemical sensitivities. When her three daughters began showing signs of chemical sensitivity in their early teens, she became an outspoken advocate for the chemically sensitive through documentary films, books and articles and lobbying members of Congress.

In her most recent book, Amputated Lives: Coping with Chemical Sensitivity, Alison Johnson discusses the causes and consequences of chemical sensitivity in the twenty-first century. In the preface to the book, Ms Johnson states, "All my books and documentaries have had a central goal in mind--to convince readers and viewers that chemical sensitivity is real and is devastating far too many lives."

About the first third of Amputated Lives describes the causes and symptoms of chemical sensitivity, with whole chapters devoted to veterans of the Gulf War, survivors of the World Trade Center disaster and "Katrina's Toxic Aftermath." The rest of the book is a compilation of individual stories of people with chemical sensitivity.

Warning: this book will make you angry and it will break your heart. I would not call Johnson an emotional writer, but she is obviously passionate about her subject, and she doesn't pull any punches. Particularly in the personal story section, she lets the stories speak for themselves, and that they do very well.

Order information, along with more information about the author and her other works, can be found at www.alisonjohnsonmcs.com. The book can be ordered for $15.00 plus $3.00 s/h. If you want a single copy, you can send a check for $18.00 to MCS Information Exchange, 4 Wren Drive, Topsham, ME 04086. The order information also includes, "If you are facing severe financial difficulties, you may inquire about a discount." Clearly, Alison Johnson's only motive in writing and publishing this book is to educate people. As a publisher myself, I can tell you that she isn't even covering her expenses with what she is charging.

I am hoping in the near future to purchase an entire box of these books and distribute them to family and friends. In the meantime, I just have to tell people about this valuable contribution to the MCS community and the voice of warning it presents to people who are not yet chemically sensitive.

Sewing and Crafts

2009-01-22T11:47:00.002-07:00

I've been buried in a sewing project this week (piles of red satin for a Valentine wedding). Just as I was wondering if there were more chemically and environmentally friendly sewing products, I received my daily email from The Canary Report ( www.thecanaryreport.org ), which contained a post with links to online sources for organic sewing and craft products.

After this Christmas shopping season, I am more determined than ever to put my money where my mouth is and restrict my shopping (as much as possible) to organic/chemical-free products. So I want to pass on some information to the rest of you who don't want to give up your sewing and craft projects to stay chemical-free.

NearSea Naturals
Surf on over to www.nearseanaturals.com and shop to your heart's content. This is a great retail site with lots to offer. If you're like me, you already have a closet full of sewing and craft notions, but probably not like the things you'll find on this site. And they're reasonably priced too. From batting to thread to fabric, you'll find it here.

Eurolaces
I have to confess to a love for lace that borders on obsession. It started with the tatted lace my mother gave me after my Danish grandmother died and has been encouraged by hours spent at flea markets and estate sales. When I went onto the site at www.eurolaces.com I was almost frothing at the mouth at the sight of beautiful handmade European laces which, according to the company are "...100% certified organic...made from start to finish chemically free, and without toxins in the production." This site doesn't provide online ordering. You have to call or email (they prefer email so they have your order in writing). So I called. Their lace prices range from $.90 to $3.85 per yard--extremely inexpensive for quality lace.

I know I sound like a sales rep for these companies, but I'm really just a sucker for all things textile in nature. I've had to give up a lot of things because of chemical sensitivity, including many craft activities, but I can still sew. And it's good to know that there are products out there that are safe for me to use. Now I just have to come up with a good project.

Simplicity

2009-01-21T10:25:00.002-07:00

Yesterday, as part of the Presidential Inauguration, a cello/violin/clarinet/piano quartet played a piece composed by John Williams and based on the old Shaker hymn, "Simple Gifts." NPR replayed the performance on their morning radio program today. The Marine Corp Band also played an arrangement of this hymn in their prelude to the Inauguration yesterday. Is there a theme here?

A couple of years ago, on a trip to New England, we stopped at the Canterbury Shaker Village, and I was so enthralled with the simple life style of these quiet people. The words of the hymn are as follows:

'Tis the gift to be simple, 'tis the gift to be free,
'Tis the gift to come down where we ought to be,
And when we find ourselves in the place just right,
'Twill be in the valley of love and delight.
When true simplicity is gained,
To bow and to bend we shan't be ashamed,
To turn, turn will be our delight,
'Til by turning, turning we come'round right.

I think the "turning" metaphor is in reference to the woodworker shaping the legs of a chair (for which the Shakers are famous). It brings to mind a vision of the simple Shaker furniture, beautiful in its absolute balance.

Whenever I come home from being away (as I was for two weeks of this month), I always have a desire to clear away the clutter of my home and my life, to get back to simple basics in eating, dressing and just everyday living. It seems to me that the chemical poisoning of our world is a result of our complicated lives. And in turn, our lives are complicated by the chemicals. If we were to simplify our eating (natural foods, grown locally as much as possible), if we were to simplify our clothing (wearing less, using natural fibers and dyes), if we were to simply our homes (less adornment, less space to heat and cool, less pretension), if we were to simply our activities (less running from place to place), would we not use less chemicals? Would we not all be healthier?

Something to think about.

Of Babies and Birthing

2009-01-11T20:47:00.003-07:00

I returned home last night after an eventful week with one of our two "adopted" families, as they experienced the birth of their eighth child. Though I didn't give birth to the mother of all these children, she is much like a daughter to me. I was with her for the home birth of numbers 6 and 7 (twin boys born two-and-a-half years ago), and it was a pleasure to be with her again for number 8, a beautiful baby girl weighing in at 9 lb. 14 oz. All of these children call me Grandma, and they are a joy. With five boys and three girls, ranging in age from almost sixteen to newborn, they are also exhausting.

Like many people with MCS, I have other residual ailments as well, and maintaining stamina is always a challenge. However, I am happy to report that despite the mountains of laundry done, the countless peanut butter sandwiches made, the many potty assists (with barely trained twins) and several days of sleep deprivation, I had only one small incident of a chemical reaction, and that was my own fault. (I used some "scent-free" deodorant that contained a masking fragrance.) Even with all those people in one house (including a teen-age daughter), this family manages to stay mostly chemical-free. And what few fragranced things they do use, they went without while I was there.

It was a long trip home, as I had to stop often to stretch my legs, which were stiff from sleeping on a sofa bed with a four-year-old snuggled up next to me. And my right foot is still a little swollen from when a two-year-old ran over it with a monster truck. It will take me a few days to recover, that's for sure, but I wouldn't trade the experience for the best night's sleep in the softest bed anywhere. Ahhhh...birthing is such a joy, at least when you're the grandma.

New Year Resolutions

2009-01-01T08:00:00.000-07:00

I have never been a big fan of New Year resolutions. Though I'm very good at coming up with them, I'm not very good at following through with them. However, there are some things I really want to work on this year. So here are my New Year resolutions for 2009:

Love more.

Laugh more.

Forgive.

Take a fragrance offense as an opportunity to educate, not to offend in return.

Use less plastic.

Throw away less.

I know. These sound vague and unmeasurable. But my life is unpredictable from day to day, so I have to be flexible. I promise I will expound a little more on these in the next few weeks, but for now, I feel a great sense of accomplishment in just writing them down and putting them out them in cyberspace for the whole world to see.

Happy New Year All!

Christmas Greetings

2008-12-25T20:34:00.002-07:00

It is the end of another Christmas Day, and we've survived the crowds, the presents and all the excitement of the children. Now it's time to just sit.

Merry Christmas to All and to All a Good Night!

Stillness

2008-12-19T22:45:00.002-07:00

Still, Still, Still

This is the title of one of my favorite Christmas songs. And it’s a good reminder at this hectic time of year to just stop and “Be still.”

We specialize in extreme winter weather here in Montana, with unimaginable temperatures (we’ve seen the thermometer on our back porch dip to -40), fierce winter winds and blinding blizzards that intimidate even the most experienced of drivers. But the snow storms of my childhood in northern Utah covered my world in a heavy wet blanket of white silence that could still even the most rambunctious child on Christmas Eve. My ultimate picture of stillness is a winter evening with the snow falling gently in the light of the lamppost on the corner. Several inches of newly fallen snow on the sidewalk muffles my footsteps as I walk the block to my aunt’s house. It is so still, so totally silent, that I imagine I am in another world entirely. It is to that stillness, albeit only in my mind, that I retreat when life’s demands (and my body’s inability to meet them) overwhelm me.

Still, still, still,

One can hear the falling snow.

For all is hushed,

The world is sleeping,

Holy Star its vigil keeping.

Still, still, still,

One can hear the falling snow.

Wishing you stillness, as you contemplate the beauty of the season.

Emergency Preparedness for People with Disabilities

2008-12-16T10:32:00.003-07:00

A post by Susie over at The Canary Report combined with a severe Arctic air mass descending on Montana this week (temperatures hovering around -20F) got me thinking about "emergency preparedness. " What comes to mind when you hear this phrase? Emergency packs in the car and coat closet? Food storage? A list of phone numbers on the frig? A family emergency plan? All of those things have to be adapted for people with disabilities.

I sometimes get a little bit paranoid about this. The thought of going to a public shelter for help sends chills down my spine. Not only would they not have any food I could eat, but they would undoubtedly use cleaning and first aid products to which I would be sensitive, not to mention the personal care products used by the mass of people all in one location. On the other hand, the idea of freezing to death in a heatless home (or worse yet, in a tent on my front lawn if we had an earthquake) doesn't exactly warm my heart either. And these are only MY concerns. What about all the other disabilities people deal with, like diabetes, MS, etc.? The Red Cross and local health care agencies can accommodate some of these people, but certainly not all in a mass emergency. It's up to us as individuals to prepare for our own (and our family's) needs. So here are a few ideas that give me peace of mind. I'd be really interested to know how others have tweaked their family emergency plans to meet individual needs.

Food storage: while other people store wheat, we store brown rice, about 200 pounds of it in the freezer (it will go rancid at room temperature). We follow the old adage: store what you eat and eat what you store.

Emergency packs: the emergency packs in our vehicles and coat closet contain gluten free foods, fragrance-free toiletries and plenty of Pepto Bismal tablets (just in case I do get some gluten in something). I also need to include laundry detergent, so I could at least hand wash my own clothes if necessary. I am so concerned about this that I actually have an extra emergency bag in the trunk of my car containing nothing but gluten free food, enough to last me a week or two, and a case of bottled water (I can't tolerate treated water).

Camping supplies & clothing: we have camping supplies and emergency clothing in our garage in case our home was damaged. A tent would be a much safer place for me (even in the winter) than a public shelter.

Heat: we have a large stone fireplace in which we have installed glass doors (to keep smoke out of the house), and we have a large stack of firewood available. Burning wood in the fireplace to keep warm would certainly cause me some problems, but would not be as life threatening as freezing to death, so this is a compromise. And, of course, if we were burning wood, I wouldn't be able to go outside, where the smoke would really make me ill.

Emergency plan: we have family and friends who live in other parts of the valley who would take us in for a few days if need be. Their homes are fairly safe for me, and we would bring our own food. In the seven years we have lived here, the entire valley has not lost power at the same time, so this is a viable option most of the time.

List of things to grab: these are things we use all the time, but would grab if we were leaving the house, like my vitamin powder, RWO's daily medication and the thumb drive containing the book I'm writing. (I should add the raspberry jelly filled candies RWO bought me for Christmas--wouldn't want to leave those behind!)

I'm sure I'm missing something, so I'm going to think on this some more. Hmmmm........

Less Toxic Children's Art

2008-12-12T21:14:00.002-07:00

A couple of weeks ago, I had three of my grandchildren come over and help me put up Christmas decorations. As we took the items out of the storage boxes, we discovered that one of the favorites, a plastic snowman, had lost his carrot nose. The kids were relieved when I found the nose in the bottom of the box, and they insisted that I glue it back on. But with what? Superglue would work best, but I would certainly have a reaction to that toxic substance. I got into the kids' art supply box and pulled out the school glue, but the nose just wouldn't stay on with the sticky white stuff. Finally, I tried a piece of tape--not very attractive, but it seemed to do the trick.

This incident got me to thinking about kids' art materials. Just how safe is school glue anyway? And what about those marking pens or even the 144 different colors of crayons?

Today I took those same grandchildren to a children's art workshop at our local art museum, where they painted and glued the most beautiful Christmas trees. While the kids focused on their artful masterpieces, one of the other adults asked the artist in charge about the toxicity of the materials the kids were using. As my ears perked up, I heard that this particular artist teaches a seminar in chemically-safe children's art materials, and the museum store has just started carrying art kits and materials that are safer for kids than what you would find in the art aisle of your favorite superstore.

The kids were anxious to take their creations home after the activity, so I didn't get a chance to look in the museum store or find out when the next seminar on children's art materials is being held, but I'll be stopping by next week, without the children, to check it all out. And maybe I'll find something safe for me to use to re-attach the snowman's nose, which, alas, has fallen off again.

Calling all Mama (and Papa) Bears

2008-12-09T14:01:00.002-07:00

I can get pretty heated up about chemical contamination issues, but if you really want to see the steam coming from my ears, tell me about children being exposed to toxic substances. Then the Mama Bear in me takes over, and whether or not the cubs are my own, I can get pretty fierce in my attempts to protect them.

I've received two different emails today with links to a USA Today article about the location of public schools near toxic chemical sites. You can read the article here: http://content.usatoday.com/news/nation/environment/smokestack/index
Besides the article, this site also gives you the option of finding the chemical pollution ranking of any school location in the country. After you read the article, you can go here:
http://www.childproofing.org and find out what you can do to make schools and our communities safer places for children to live and learn.

Childproofing our Communities is a project of the Center for Health, Environment and Justice (CHEJ), a non-profit organization founded by Lois Gibbs, the mother living near Love Canal thirty years ago, who led the fight against that toxic spot. Their mission statement says that they will assist any individual, family or community in the fight for a safer environment. They are currently leading the way to insisting that the EPA follow through on already established policies of building schools in safe locations. This is really a big issue. One place this controversy has raged is in the Salt Lake Valley, where plans were made to build a secondary school in a big industrial area right next to I-15. Clearly, this was not a healthy location for children to spend the bulk of their daylight hours.

I see the location of schools, however, as only half the battle. There are many communities (like Utah Valley, where some of my grandchildren live) in which the overall air pollution is so bad that no school location has a good rating. So the battle to clean up the whole community has to to on.

There is much work to do in cleaning up our toxic environment, with too many people in denial of the seriousness of the problem, but almost everyone agrees that children should be protected, so that's a good place to start.

Accepting (and celebrating) Our Differences

2008-12-02T15:59:00.002-07:00

My husband, Randl, knocked on the bathroom door this morning while I was in the shower to tell me that Joseph Wirthlin had died last night. I grew up around the corner from this sweet man and his large family, and I have many fond memories of his cheerful greetings and gentle handshake. He always made everyone feel comfortable. For the last twenty-plus years of his life, he served in a top leadership position in The Church of Jesus Christ of Latter-day Saints (LDS), which gave him ample opportunity to give speeches. One of my favorites was a speech he gave last April entitled "Concern for the One," in which he talked about seeking out the "lost sheep." At the time, I had just recently quit attending church meetings because of my MCS, and his words really resonated with me. Following is an excerpt from that speech:

Some are lost because they are different. They feel as though they don't belong...They may look, act, think, and speak differently than those around them and that sometimes causes them to assume they don't fit in. They conclude that they are not needed.
Tied to this misconception is the erroneous belief that all members of the Church should look, talk, and be alike. The Lord did not people the earth with a vibrant orchestra of personalities only to value the piccolos of the world. Every instrument is precious and adds to the complex beauty of the symphony. All of Heavenly Father's children are different in some degree, yet each has his own beautiful sound that adds depth and richness to the whole.
This variety of creation itself is a testament of how the Lord values all His children. He does not esteem one flesh above another, but He "inviteth them all to come unto him and partake of his goodness; and he denieth none that come unto him, black and white, bond and free, male and female: ...all are alike unto God." [Book of Mormon, 2 Nephi 26:33]

At a time when I was feeling totally rejected by the people that I thought should care the most, these words gave me hope and made me feel valued.

Holiday Stress

2008-11-26T11:36:00.003-07:00

I've received several emails in the past couple of weeks aimed at helping me de-stress for the holidays, like "Six tips for heading off holiday fatigue" and "Ten Holiday Survival Tips", etc. Invariably, the number one suggestion on these lists is to "make a plan." So a few days ago I sat down and made a list of everything I want and/or need to do in December. All I can say is,

HELP!!!!!!!!!!!!! PANIC ATTACK!!!!!!!!!!!!

So, on to the next suggestions, "Be realistic," and "Don't be afraid to say no."

It's normal for me to get close to a deadline (and Christmas is definitely a deadline looming large on the horizon) and start looking for things I can "not do" on my list, but here I am a month out and I'm already at that point. So before I can go any further on my to-do list, I must

BREATHE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

...slowly, through my nose, inhale, exhale...

Okay. Now that I'm thinking more clearly, here are some things that I think will help me get through the next month:

Pick one or two outside functions to attend and say no to the rest. We're taking the local grandkids to The Nutcracker (I bought a block of seats so I can be surrounded by unscented family), and I'd like to take a nighttime drive to see the lights, but I'll skip the church Nativity display, the community Festival of Trees and the symphony's rendition of The Messiah (I really hate missing this, but they do it in the Catholic cathedral, which is very small and no where to escape).

Plan shopping trips to be early morning, mid-week and short, and shop online as much as possible. Actually, I have most of my shopping done, so I can breathe on that one.

Stick to a budget. Ahhhh, this is a hard one for me. I see so many things I want to get for the great people I love.

Stick to a regular routine of eating and sleeping. This is a hard one too. It's oh so tempting to stretch the hours in the day or skip a meal while out shopping. But for me, this is probably the MOST important thing I can do to stay healthy.

Buck tradition. Nowhere is it written in stone that you must have a full turkey dinner for Thanksgiving (we're having chicken) or make homemade goodies or ornaments for everyone you know. And, as I discovered last year, the etiquette fairies will not put an eternal curse on you if you don't handwrite the addresses on your Christmas cards (or don't send them at all). I actually really enjoy sending and receiving cards, so this is one thing I'm not ready to give up yet, but my arthritic hands simply can't survive the handwriting. So printed labels save the day. The only reason we still put up a Christmas tree is because the grandkids enjoy it so much, so I have them come over and decorate it for me and also take it down after Christmas. Why should I do all the work?

Which leads me to the last suggestion: Let others help. I have a hard time with this one sometimes too. There are some end-of-the year things that are easier to do myself, like updating business records (ready for taxes) and writing the family Christmas letter, but I'm sure there are things that others could do just as well. Or, better yet, could be left undone.

Any other ideas for reducing the December stress load? I need all the help I can get.

Art as Stress Reducer

2008-11-20T10:30:00.003-07:00

No matter what the illness, stress of any kind (mental, emotional, physical) only makes it worse. Legions of books and articles have been written about stress reduction, but for me personally, the best stress reducer of all is any form of art, i.e. literature, music or visual. I am fortunate enough to have been raised in a home where the arts were valued (an understatement) in all forms, and I learned to enjoy them both as an observer and as a participant.

Hanging on the wall over my computer desk is an oil painting of a still life done by a close friend. When I am feeling stressed over a work project or something in an email, I have only to look up at the gentle tulips in their blue crockery vase to immediately feel a sense of peace.

As I'm out running errands (usually in a hurry, trying to avoid too much perfume exposure), my radio is often tuned to NPR's Performance Today or From the Top, where I can listen to old classical favorites which I used to perform in orchestral and chamber music (back before my back gave out and I sold my cello).

And then, of course, there is my favorite form of art--literature. My mother once wrote in her journal, "If I didn't have some time for reading every day, I felt cheated." My sentiments exactly. There is nothing more relaxing to me than curling up in my favorite chair, wrapped in an afghan and reading a good book.

On Sunday afternoons, when I am all alone and feeling sorry for myself, nothing lifts my spirit like the tickling of the ivories underneath my fingers on the keys of my piano. Whether it's Beethoven's "Moonlight Sonata," Debussy's "Clair de Lune" or a quiet arrangement of "Abide With Me", the rest of the world disappears as the notes carry me into some other sphere.

While organizing some old family photos some time ago, I came across a postcard in my Grandmother Valborg's things with the following verse written on the back in her handwriting. I have no idea who originally penned these words, if they are her own or some she heard and just jotted down on the closest available paper. But they much more eloquently express my feelings about art.

We sing to ease our sorrows
Or the hunger in the heart
And this becomes the magic
And the miracle of art:

That even in the utterance
The hunger is assuaged.
And in the very singing
The captive is uncaged.

Thanksgiving Dinner--Healthy and Chemical Free

2008-11-14T15:23:00.004-07:00

The traditional family Thanksgiving dinner can really be a challenge for people with chemical and food sensitivities, but with a little bit of planning, everyone can have a good time and fill their bellies too. Here are some suggestions that work in our family.

We keep the group small (just ten of us this year), and everyone comes fragrance-free. When they get here, coats and shoes are left at the front door. As for food, here is this year's menu:

Two whole free-range organic chickens (raised by a local Hutterite colony), baked with herbs
Cornbread stuffing casserole (cornbread made gluten-free & egg-free with organic cornmeal and rice flour)
Green beans (frozen from our garden)
Mashed potatoes (made with Yukon gold potatoes from our garden and organic chicken broth)
Pumpkin/rice flour muffins (pumpkin is frozen from our garden) served with organic butter (from Costco)
Frozen organic mixed berries (also from Costco) served with fresh whipped cream (O-organic brand from Safeway) for dessert

With the exception of the whipped cream and the butter, this entire meal is free of gluten, eggs, dairy and soy and sugar. All of the food will be cooked in (and leftovers stored in) glass dishes, which are wiped with olive oil to prevent sticking.

I know, now you're asking, "Where's the turkey and pumpkin pie? And what about cranberry sauce and green Jello?"

Actually, this will be the first year I haven't cooked a turkey. The truth is, natural turkeys just aren't that good to eat, unless you cook them the way my mother used to, which requires hours of hand basting and results in a very messy oven, and I would rather spend the time visiting with my guests. The traditional pumpkin is put into muffins instead of pie, and the berries replace the green Jello. As for cranberry sauce, no one in the family really likes it, so why bother?

Perhaps this won't be Thanksgiving as I remember it as a child, but there are holdovers with the stuffing casserole and pumpkin muffins. And if we weren't trying to stay dairy-free, I would definitely make pumpkin pies (at least the custard filling without the crust). Yummmmm!

Any other ideas?

Ahhhh, the Sweet Aroma...

2008-11-11T18:26:00.004-07:00

People with chemical sensitivities are always sniffing for threatening fragrances. There are so many smells that signal Trouble (yes, with a capital T). But all of our sniffing doesn't have to be negative. Last week I started a list of things I love to smell. Here it is for your perusal.

onions cooking in butter (the smell of Thanksgiving morning)
grapes steaming into grape juice
fresh hay or alfalfa (I like the smell of it, but will break out into a rash if I get near it)
the mint fields of western Oregon
the air after rain
dirt (full of organic compost, of course)
tomatoes fresh from the garden
applesauce cooking on the stove
sweaty little kid bodies after playing outside
the ocean
the mock orange blossoms outside my bedroom window
Daphne blossoms (outside my bedroom window in the last house)
wet wool
fresh olive oil
vanilla
peppermint tea
the onions stored in my garage
my husband's homemade bread (I can't eat it, but I love to smell it)

Now, Friends, what would you add to this list (that isn't produced by a chemical substance, of course)?

Hope

2008-11-05T10:29:00.002-07:00

hope v. To wish for something with expectation. -n. A desire accompanied by confident expectation.

We must accept finite disappointment, but we must never lose infinite hope.
~Martin Luther King Jr.

Life without idealism is empty indeed. We just hope or starve to death.
~Pearl S. Buck

The very least you can do in your life is to figure out what you hope for. And the most you can do is live inside that hope. Not admire it from a distance but live right in it, under its roof.
~Barbara Kingsolver

Hope sees the invisible, feels the intangible and achieves the impossible.
~Anonymous

Learn from yesterday, live for today, hope for tomorrow. The important thing is to not stop questioning.
~Albert Einstein

But if we hope for what we see not, then do we with patience wait for it.
~Romans 8:25

Hope in the face of difficulty, hope in the face of uncertainty, the audacity of hope: In the end, that is God's greatest gift to us, the bedrock of this nation, a belief in things not seen, a belief that there are better days ahead.
~Barack Obama

Wherefore, there must be faith; and if there must be faith there must also be hope; and if there must be hope there must also be charity.
~Moroni 10:20

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,

And sweetest in the gale is heard,
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.
~Emily Dickenson

Dreams and Memories--That was Then, This is Now

2008-10-31T20:44:00.003-06:00

I have really vivid dreams, especially if I awake early and then go back to sleep, as I did this morning. In the wee hours before dawn, I dreamed a succession of brief scenes in which I performed on a college stage, gave a talk in church and then moved my young family into a residence shared with a rough-looking man and his girlfriend. Strange stories…fodder for fiction…yet, the subject matter was not as revealing about my state of mind as were the feelings with which I awoke from my adventures.

As the new day’s light crept through the blinds at my window, I felt fully relaxed, in a state of utter contentment. In my dreams I had been whole, a healthy, active, non-ill person, going about life with confidence and pleasure. As I continued to awaken, I realized it was all a dream. Yet, it was not just a fantasy. It was real because I really had been like that once, and I could remember the past with fondness. Memories can sometimes stir up feelings of regret or loss, but in this case they only stirred up feelings of confidence and reassurance. I once had a normal life (well, more normal than now anyway) in which I interacted with other people, went out in public and could live anywhere, and I can appreciate what I had, even though things have changed. That was then, and this is now.

Several years before my mother died she had a series of small strokes that left her unable to do many simple tasks, like holding a pair of scissors or mending a torn hem with needle and thread. For years she had loved to do needlepoint, so I was somewhat dismayed when I visited her shortly after the strokes and found that she had several unfinished projects in a bag to be given away. She thought perhaps my mother-in-law Fern would like them. “But Mom,” I asked plaintively, “don’t you think you might be able to do this again eventually?” She calmly replied that she had done needlepoint for many years, and now she would just do something else. Maybe she would read more or just sit and enjoy the company of others. That was then, this was now.

For Christmas the following year, my mother-in-law gave me a beautiful needlepoint pillow. It was one of the projects my mother had started and Fern had finished. Mom is gone now and Fern is no longer able to do any handwork due to a fall. But that pillow sits on the little sofa in my office, a gentle reminder of both their pasts. Like my dreams, it’s a brings back memories of a time when things were different, when bodies were whole. But, as Mom would say, life changes and we have to keep on going with it. That was then, this is now.

Celiac Disease--An Anniversary

2008-10-28T10:22:00.001-06:00

Ten years ago this month I was officially diagnosed with celiac disease (CD), an autoimmune disease in which ingestion of certain grains (principally wheat, rye and barley) causes damage to the lining (the celia) of the small intestine. The only treatment is a diet with NO traces of the offending grains, usually referred to as a gluten-free (or gf) diet. At the same time, I was also given an official diagnosis of MCS.

MCS and CD are both symptoms of an immune system gone awry. In my case, trying to determine which one came first is like asking the proverbial question of which came first, the chicken or the egg. I may have had symptoms of MCS before those of celiac, but years of undiagnosed celiac caused permanent damage to my adrenal glands, which in turn caused more chemical injury--or did the chemical injury cause some of the adrenal damage and thus aggravate the celiac? These are questions I quit asking long ago, because there were no clear answers, and knowing wouldn't change how things were anyway.

But, suffice it to say, finally getting a diagnosis of celiac disease and multiple chemical sensitivity ten years ago was a big milestone in my life. For one thing, I felt validated. I really was physically ill. I wasn't just making it all up in my head. Now I had medical records to prove that I had been telling the truth all along. I also had a plan for action. By changing my diet and lifestyle I could achieve a better quality of life. And I had justification for warning my family and friends (celiac disease has a genetic component). My story could be a cautionary tale for others.

I still have plenty of health challenges, but looking back I know I am better off now than I was ten years ago. I've backed up a few steps from death's door, and I know what I can and can't eat. But just to make sure I didn't forget how bad things were, I celebrated this anniversary this past weekend with a gluten reaction. Not on purpose, mind you. But somehow some gluten got into my diet by accident, and, well, I will spare you the details, but a gluten reaction is very similar to a severe case of food poisoning (it won't kill you, but you wish it would).

I'm on the mend today--still a little tired, but functioning--and thankful to know the cause. Life is unpredictable with any chronic illness. You never know what a new day will bring. Makes life exciting, doesn't it?

Earth Stewardship

2008-10-24T23:22:00.000-06:00

Our world is one big chemical soup, from the pollutants in the air we breathe to the cleanser we use to scrub the bathroom sink, from the plastic in our baby bottles to the shampoo we use to wash out the gray. From birth to old age, we are surrounded by chemicals in our homes, our public places and even on the grass we play in as children. Like straws on the camels back, these chemicals accumulate in our bodies until that proverbial last straw breaks our proverbial backs in the form of immune disorders and chronic illness. For some, like me, the pile becomes too large at an early age and the damage becomes irrevocable.

I can’t reverse the damage that has already occurred to my body, but I can become militant in preventing it from happening to others. Thus my interest in and association with the environmental movement. I believe that God created the earth for our use, but charged us with the responsibility to be wise stewards. If we allow the earth to be poisoned with chemicals, we do so at our own peril. As a chemically injured person, I am a living witness of the consequences of poor stewardship (my own as well as others').

The recent honor given to the LDS Church for its promotion of green building policies in the ambitious City Creek Center in downtown Salt Lake City is evidence that my beliefs are backed up by other people of my own faith. In an article in the Deseret News (June 20, 2008), Bill Williams, director of architecture and engineering for City Creek Reserve Inc., a development arm of the LDS Church, was quoted as saying, “As you look at the tenets of our religion, there is a notion that we must be good stewards in all that we do…It is our hope that this project will be prosperous while standing true to our values of wise stewardship and giving back to the community.”

There are many ways to become involved in earth stewardship, from personal (i.e. using nontoxic cleaning products and reusable grocery bags) to global (supporting international environmental initiatives and pressing for more accountability from big businesses). One person can't do it all; one organization can't do it all; one country can't even do it all. But that doesn't mean we shouldn't try. There are many differing ideas concerning what should be done, but for me personally, my goal is to leave the world a cleaner and healthier place for my posterity.

In future blogs I would like to explore this topic further. What can we do now that will make a difference twenty years from now? Where do we draw the line between fanaticism and practicality? What can be put off and what should have been done yesterday?

Though I have suffered from chemical sensitivity for almost forty years, it has only been in the past ten years that I have become actively involved in earth stewardship, but it wasn’t much of a leap. It was just a logical step for me to take, from protecting my own personal environment to seeking protection for the larger environment of the world.

I'm Back...Almost

2008-10-23T19:54:00.000-06:00

My apologies for not posting very much the past three weeks. I was in Utah for eight days, then home for a few days, then had company for four days, then grandkids for a couple of days, and then company again last night and this morning. That's just way more activity than my old bones (not to mention my immune system) can handle. And on top of all that, I've been fighting a cold.

Respiratory ailments and MCS are just not a good combination. And the visitors we had were all great about not using anything scented, but having extra people in the house always brings in more of the outside world, and that means more MCS symptoms (headaches, fatigue, fibromyalgia). It's a vicious circle, isn't it?

So I'm back to R & I (rest and isolation) to try to recover my wits (what's left of them). And I promise...more blogging...my favorite R & I activity.

Winter in Montana

2008-10-13T09:59:00.000-06:00

The scene outside my office window as I closed the blinds last night was one painted in shades of gray and muted white, the dark trees covered with snow and the distant snowy hills just a white line against the graying sky. But like one of those old hand-tinted black and white photographs, a swath of pale pink colored the sky just above the hills. Quiet and surreal, I felt like I was part of a piece of artwork hanging on the wall in a great gallary, and indeed, I suppose I was.

Driving north from Utah to my home in Montana on Friday, I could see the snow clouds firmly sitting at ground level as I approached the Idaho/Montana border. By the time I came to the little town of Spencer, Idaho, I was engulfed in blowing white. But it was not really sticking to the roadway, and there was hardly another car anywhere to be seen (the other drivers having actually checked the weather forecast before setting out), so I just slowed down (careful not to use my brakes) and continued on my way. The audio book I had rented the week before continued to play (a new Anne Tyler book, Digging to America), and, as stopping really wasn't an option, I just kept going, over Monida pass and on into Montana.

When I pulled over to get gas and a chocolate bar in the little town of Lima, Montana, a fellow pulled in behind me. As we both got out of our vehicles, he called to me, "Hey, that Monida pass was really something, wasn't it?"

"Oh, I've driven it when it was much worse," I replied. "At least today the road wasn't snow packed and icy."

"Well, bless you," he called back.

It is not unusual for someone to follow another's tail lights in a storm. I have done it many times myself when I have been unfamiliar with the way. But this is the second time in the past year that I have had someone follow me through a storm on this same stretch of road.

I feel unsafe in so many places--church, the grocery store, a symphony concert--but I never for a moment felt unsafe driving home through that blizzard on Friday afternoon. I think it is the known vs the unknown, and solitude vs a crowd, that makes the difference. I know that road, having driven it so many times in so many varying conditions, but I never know what I will confront when I walk into church or a supermarket. And I was virtually alone on that road (or thought I was), the master of my own fate so to speak, while in a crowd I am at the mercy of strangers, or even people I know, who pose a threat by their perfumed proximity.

In solitude and the familiar there is peace. It's good to be home.

Off to Salt Lake...

2008-10-02T13:46:00.000-06:00

Well, we're off to Salt Lake City tomorrow for the semi-annual general conference of The Church of Jesus Christ of Latter-day Saints (the Mormons). Attending the actual conference session is problematic, but at least the staff and volunteers at the Conference Center are fragrance-free. I'm usually safe in a corner of one of the public areas, even if I can't stay in the auditorium itself. It's worth being there just for the music--gotta love that Mormon Tabernacle Choir. After the morning session on Sunday, Randl will head back home with friends and I will spend a few days with our middle daughter and husband and son in Provo, Utah. I'll also see my sister while there and an old friend from Washington who will be in the area as well. With the isolation that comes with MCS, it will be nice to make live connections with people who are important in my life.

But before I forget, I just have to pass on a little tidbit of information about the "greatest soap on earth." Well, I think it's the greatest anyway, and I've converted a good friend here too, who splits a wholesale order with me every six months or so. Botanie soap (www.botoniesoap.com) is made by a small company in Missoula, Montana, and is available in several natural fragrances as well as no-fragrance-added. It has an olive oil base and just feels yummy on your skin. And it actually cleans, even my four-year-old grandson's grimy fingers after he's been digging in the dirt. Best of all, even Randl likes it, so we don't have to have two separate bars of soap in the shower.

Cheers to all. Have a great fall weekend!

Sisterhood

2008-09-28T12:27:00.000-06:00

Yesterday morning my daughter-in-law hosted a "jewelry party" at her house. The jewelry was nice (and of course I ordered a few pieces), but even more important to me was the opportunity to just sit and talk with other women. It was a small group, but they all knew I would be there so had come fragrance free. It felt good just to relax and enjoy the company of others.

Then last night I watched a broadcast from Salt Lake City of the general Relief Society (the women's organization) of the LDS Church. This program is held twice each year and is broadcast to LDS church buildings throughout the world, as well as over BYU-TV (which we get via Directv). The first speaker was Julie Beck, worldwide president of the organization. She spoke about the history of the Relief Society, which originated in 1842 in Nauvoo, Illinois, and she encouraged the sisters (as R.S. members call themselves) to renew their commitment to each other and the organization, caring for each other and watching over each other.

Up until a few months ago, I had been an active member of the Relief Society for close to forty years, serving twice as president of a local group and numerous other times as a counselor or teacher. I have stood in front of other women on so many occasions to praise the goodness of Relief Society and encourage participation in acts of service and compassion to each other. And I have witnessed true charity in the interactions of women who truly see and treat each other as beloved sisters.

The combination yesterday of being with a small group of women in the morning and then hearing the words of Julie Beck concerning Relief Society last night brought home to me how much I really miss sisterhood. We all suffer losses in our lives for which we must grieve and then move on, hopefully filling the gap with something else of value. But I am not sure how to fill this gap in my life. In moments of selfishness and self-pity, I rail at the women in my own local group who refuse to change their behavior so that I can participate. Yet, such wallowing is so unproductive. I can't change the behavior of other women, and railing on them to myself only makes me more angry. And I don't want to become just an angry old woman.

One place I still feel sisterhood is through online blogs. There are some wonderful LDS group blogs that reach out to women, such as www.feministmormonhousewives.org , http://segulah.org/blog and http://the-exponent.com (my favorite). Blogs cannot replace the intimacy we get associating in person with other women, but they do offer a free exchange of feelings and ideas that helps to fill the gap.

Perhaps my greatest resource for sisterhood is with my own daughters and daughter-in-law, four truly amazing women who reach out to me on an almost daily basis. I love them and really appreciate them, but it is unfair and unrealistic to expect them to fulfill the bulk of my social and emotional needs.

So I continue to seek new ways to conpensate for the loss of sisterhood I feel in the isolation of chemical sensitivity. Even introverts need a little socializing once in a while.

Important Research into Chemical Injury

2008-09-18T15:29:00.001-06:00

Okay. I just typed a whole new post and then lost it. But it's REALLY important. Following are links to two articles about new research into the effects of chemicals in our environment on children and adults.

The first one offers evidence to substantiate the claim that chemicals cause damage to children, resulting in behavior and other health problems. Not that this is any news to any mother who has ever given her two-year-old a bowl of Fruit Loops, but it's nice to have some validation from the experts.

The second link is to an article summarizing new research reported in medical journals this week about the link between the chemical found in plastic containers with heart disease, diabetes and liver illnesses in adults. The FDA is still considering whether to ban this chemical (the chemical companies are very powerful), but some manufacturers have already voluntarily stopped using it. With this new information, we can hope that more will follow suit.

These would be good articles to forward to anyone who has doubted the validity of chemical injury. The information is more than a little scary.

http://www.nwcn.com/health/stories/NW_091608ENVB_chemical_neurological_disorder_TP.8355eceb.html

http://health.usnews.com/articles/health/heart/2008/09/16/heart-disease-diabetes-linked-to-chemical-in-plastics.html

WalMart

2008-09-11T10:03:00.000-06:00

My family knows that I am no fan of WalMart, for many reasons, not the least of which being that it just isn't a safe place for me to go (too many people, too many chemicals). However, one of my grandsons saw a toy there that he really wants for his birthday next week, so yesterday morning I ventured into their aisles.

Also, I thought it might be a good idea to look at the personal care products at WalMart to back up the claim I made in a document I sent to local church leaders last week, stating that unscented products are readily available locally. I made the claim based on what is available at Safeway and the Real Food Market, but knowing that many church members shop at WalMart, I thought it wise to check out their offerings as well.

I am happy to report that WalMart carries a wide array of unscented personal care products. One of the particular questions I get from people is what hand lotions to use. After all, no one could realistically expect a woman to go sans lotion after washing her hands in a public (or church) rest room. What I found at WalMart was that Lubriderm, Eucerin, Aveeno and Equate (WalMart's house brand) all have unscented versions of their hand and body lotions. And both Suave (the cheap brand) and Salon Grafix (a more expensive brand) produce unscented versions of their hair sprays.

By the time I wrote down all the names of all these products, I realized I was going to be late for a lunch date with one of my grandsons, so I didn't get to look at shampoo, rinse and hair gel, but I am hopeful that unscented versions of these products are also on the shelves at WalMart. And I know they are on the shelves at Safeway, so I don't think I'm guilty of making any false claims.

Of course, just because these products are unscented doesn't mean they are void of any toxic chemicals or safe for me to use myself, and I would still like to steer people in the direction of the more natural products found at the Real Food Market (a shameless plug for my favorite place to shop). However, I see a switch to any unscented products by church members as a huge concession to the needs of the chemically sensitive, and I will gladly accept such an offering with the grace it is given.

(My husband suggested that we just place bottles of unscented lotion in all the church restrooms. Would it be sexist to only put it in the women's? Do men, other than my husband, use hand lotion?)

One Step Closer to a Fragrance-free Building

2008-09-09T10:19:00.001-06:00

Well, I had quite the experience this past Sunday evening. Our local church leadership (LDS stake presidency, bishops and branch presidents) met to discuss the proposed goal of designating our local church buildings as fragrance-free. Since I cannot safely go into the building, I was asked to give a 15-minute presentation via speaker phone. That isn't very much time, so I had to plan ahead and choose my words wisely. I focused on the stages of chemical sensitivity (from tolerance to permanent tissue damage), common symptoms of these different stages and then my own experience with stage 3 MCS and the physical reactions I have had in our church buildings. I also gave a brief overview of the symptoms other people in our congregations have reported having in our buildings. (We have a list of 15 people who have complained about some degree of chemical sensitivity they have had at church.)

There was an overwhelming vote of support among these leaders for pushing ahead with the fragrance-free goal in the four church-owned buildings and also in the two small rented facilities. This same group will meet again in about two weeks to finalize plans for implementation, i.e. educating members, putting signs on doors, deciding where to seat people who come fragranced unknowingly (visitors), etc.

This is a huge step for this area. As many of you know, I quit attending church meetings here entirely over six months ago. Since then, my husband (who is a member of the stake presidency) has made a great effort to educate people and enlist support for creating a safer environment (i.e. fragrance-free) in our buildings. I do not like bringing attention to myself, and would willingly have just faded away into inactivity indefinitely, but he was not willing to let it slide by.

I am realistic enough to know that this won't happen overnight. People don't willingly change their behavior without some struggle. But getting the leaders on board is a huge step. My sincere hope is that church members will realize the importance of reaching out in compassion to fellow members with special needs and will also come to understand that this creates a safer environment for everyone.

Invisible Illness Awareness Week

2008-08-31T16:02:00.000-06:00

Just when you thought you were going to get a week off from designated weeks, along comes "National Invisible Illness Awareness Week" September 8-14. Now this is not an "official" awareness week, as in one designated by an Act of Congress, but it is being honored by many online communities and even has its own blog at http://www.invisibleillnessblog.org/ . Sponsored by Rest Ministries, a large Christian organization which serves the chronically ill, the week is focused on highlighting the needs of people with chronic illness.

So-called invisible illnesses include diabetes, heart disease, lupus, chronic fatigue syndrome, fibromyalgia, and certainly MCS. The invisible illness blog has an article today listing twenty things church members can do to help people with chronic illness. A couple of the things on the list are, "Don't tell me how great I look, when I know I look lousy," and "Don't tell me that if I had enough faith or prayed hard enough my illness would go away." Another one I would add is, "Don't tell me about your Great Aunt Mable who had the same thing and cured it by waving feathers over her head every third Tuesday at 3:00 am."

Lisa Copen, who started National Invisible Chronic Illness Awareness Week in 2002, made the following statement:
"Though there are hundreds of illnesses represented, and large differences in symptoms and pain levels, none of that matters more than feeling like someone understands you. When our best friends and family members are skeptical about our disease, it can be that last straw that sets us off into a spiraling depression."

During this week in September, twenty telephone seminars will be held on applicable topics, and guest bloggers will write articles as well. In Copen's words, "We plan to unite the millions of people who live with chronic pain and illness by offering an oasis of hope and understanding, as well as helpful information and practical tools to live the best life possible."

So, the second week of September, be more aware and not so invisible.

Making the World Safe for Babies and Children

2008-08-19T13:59:00.000-06:00

Okay, so I haven't been very good at keeping up with this blog this summer. It's just that I've been too busy in my Grandma role to keep up with everything else. Not that I'm complaining. I can't think of anything I'd rather do than play Grandma.

Besides spending a good portion of July with baby Jack and his parents, we had our Sara and her two boys, George and Jack, with us this past week. Of course, there have been numerous days with Cole, Max, Sterling and Morgan, and we just found out that Jill and Michael are expecting another baby the day after Christmas. Truly, my cup runneth o'er.

So, needless to say, my mind has been much on children and babies. Today I heard about a great "natural baby" website at www.babypurity.com . If you too have babies-on-the-brain, check it out for products and other information. It's more than just another retail website. There's lots of interesting baby help too. And, if anyone is close to Vancouver, BC, this website has information about a Mother's Conference being held there on October 25th. Sounds interesting.

Some other tidbits have also come across my email this week that may be of interest to anyone wanting to improve the air quality of a home or office (especially important for homes with little people). One way to improve indoor air quality is to introduce toxin-consuming plants into your environment, such as philodendron, spider plants, golden pothos, peace lilies, bamboo palms, mums, and English ivy. According to NASA research, these plants help remove formaldehyde, carbon monoxide, benzene and other toxins from the air. Of course, these plants may be poisonous if ingested, so you'll need to keep them out of reach of little hands. (We keep ours on top of tall bookcases.)

Another tip is to have a no-shoe policy in your home or office. You can't believe what kinds of things get tracked in on the bottoms of your shoes and then get left in the carpet as you walk across it (like pesticides, oil and grease, dust, etc.). Not only do these pollutants affect the air quality, they aren't too good for little hands and knees that crawl across these surfaces. If you have someone who just refuses to go unshod, a pair of shoes used only for indoor wear is a alternative solution. Just make sure he/she doesn't sneak outside in them. Personally, I prefer to go barefoot, but I do have a pair of fleece LLBean slippers I wear around the house on cold Montana winter days.

Any other suggestions?

Expectations

2008-08-12T14:25:00.001-06:00

I often read, and sometimes comment, on other blogs. In one recent discussion I expressed my troubles with attending church meetings due to MCS and the loss I felt. Another person commented that perhaps I was expecting church meetings (and the people at church) to fulfill too many of my needs. Perhaps my expectations were setting me up for disappointment.

I have thought about this over the past couple of weeks and have come to the conclusion that, indeed, I have expected way too much of my church community.

Before we moved to Montana, I was very involved in volunteer activities at the schools and in the community at large. I also worked part time at a retail book store and had many friends and acquaintances outside of the church setting. I went to church on Sunday and felt that my physical and spiritual needs were met, but I didn't rely on the church community to fulfill all of my needs, particularly my social and intellectual needs.

When we moved here seven years ago, our children were all adults and we worked out of our home, so I really had no place but church to meet and interact with other people. At first, as I was making new friends, this was quite sufficient. But, as time went on, I felt starved for a stirring literary discussion or someone with whom to share my political views. When I couldn't get these needs fulfilled at church, I became frustrated. Then, on top of that, I started having serious problems with chemical sensitivities at church. When people weren't willing to change their habits to accommodate my needs, I felt rejected and unloved.

The truth is not that people don't care, but that they don't really know how to meet my needs, and they can't possibly meet all my expectations. Truly, my expectations were just too great for the available resources.

This past Sunday, I was able to go to church in one of the other buildings in our area. I went expecting nothing, except to enjoy being with some of my family. There were no great stimulating conversations, and I couldn't tell you what the talks were about (I was holding a one-year-old on my lap through the service). I didn't make any new friends or have any great new spiritual experiences. However, I did enjoy being around other people and it felt good to do something on Sunday other than sit at home and read a book (my usual Sabbath activity). It isn't easy to lower one's expectations, but it does result in less frustration and anger.

Consumer Product Safety Commission Reform Act

2008-08-05T11:01:00.000-06:00

The following press release was posted last week concerning the Consumer Product Safety Commission (CPSC) Reform Act, which has been passed by both houses of Congress and is now sitting on President Bush's desk awaiting his signiture to put it into law. The chemical industry lobbyests put great pressure on members of Congress to not pass this legislation, but reason won out. If you are interested, you can call the President's office at 202-456-1414 to urge him to sign this bill. It is a huge step in protecting all of us, but particularly children.

July 31, 2008
Reid: Senate Sending President A Product Safety Bill To Protect American Consumers
Washington, DC—Senate Majority Leader Harry Reid made the following statement today after the U.S. Senate passed the conference report to accompany H.R. 4040, the Consumer Product Safety Modernization Act:
“We are sending the President a strong bill that says his Administration’s lax regulation standards on children’s safety are unacceptable. This bill gives the Consumer Product Safety Commission the resources, authority and oversight it needs to protect our children from lead, dangerous toys and other unsafe products. For years now, the CPSC’s budget and staff had been slashed while 28,200 Americans die and 33.6 million are injured each year. I hope the President agrees that this is unacceptable and quickly signs this good bill into law.”
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CPSC REFORM ACT PROTECTS AMERICANS FROM TOXIC TOYS
CPSC Reform Act Expands Funding for the Consumer Product Safety Commission. The bill authorizes a significant increase in funding levels for the CPSC. The bill adds more than $56 million over current levels for 5 years beginning in 2010. As part of the authorization, $25 million was directed toward establishing a public database of injuries, illness, death or risk related to consumer products.
CPSC Reform Act Bans Lead in All Children’s Products. The bill bans lead for products manufactured for children age 12 or younger.
CPSC Reform Act Requires Mandatory Toy Testing. The bill requires mandatory third party safety certification of products made for children 12 and under. Company labs would only be allowed to test products if they are certified by the CPSC, provide equal or greater consumer protection than available third party labs and are appropriately "firewalled" from other operations of the company.
CPSC Reform Act Sets Mandatory Toy Standards. The bill makes mandatory current toy safety standards promulgated by an independent standard-setting organization.
CPSC Reform Act Makes All-Terrain Vehicle (ATV) Safety Standard Mandatory. The bill requires the CPSC to adopt the voluntary ATV safety standard as a mandatory standard. The CPSC would also be required to consider strengthening additional ATV safety standards
CPSC Reform Act Establishes a Database of All Reports of Injuries, Illness, Death or Risk Related to Consumer Products. The bill requires the CPSC to establish a searchable database to include any reports of injuries, illness, death or risk related to consumer products submitted by consumers, local, state or federal government agencies, child care providers, physicians, hospitals, coroners, first responders, and the media within two years. Upon receiving a complaint, the CPSC will have 5 days to submit the complaint to the manufacturer. The manufacturer then has 10 days to respond. The complaint and manufacturers response would then be posted on the database. The CPSC would have the authority to remove or correct a complaint if it is found to be inaccurate.
CPSC Reform Act Sets a Temporary Quorum of 2 Members in Order to Allow the Commission to Conduct Business. The CPSC currently is without a quorum and cannot conduct business that requires Commission action such as a mandatory recall. The bill allows a 2-member quorum to conduct official business for a one-year period and restores the Commission to five members instead of three members to prevent future absences of a quorum.
CPSC Reform Act Streamlines the CPSC Rulemaking Process. The bill streamlines the product safety rulemaking process so that the CPSC can act more quickly in the event of a problem.

Church Revisited

2008-08-04T16:16:00.000-06:00

Last night we decided to go visit the church building with no one in it and see if the new carpets had outgassed enough for me to contemplate attending meetings again. I also wanted to see if the new, more eco-friendly, cleaning supplies were being used. I have not been in our building since the new carpet, upholstery and countertops were installed the first part of March.

As soon as I walked in, I could smell the carpet, but it was faint, so we went looking for the new cleaning supplies. Sure enough, they are using the more eco-friendly products. They aren't the products I recommended (and found were available from the distributor), but they are certainly much better than what was being used previously. We couldn't find the new hand wipes (or any hand wipes, for that matter) that we were told were being ordered for use at the sacrament table, so maybe those haven't come in yet.

We were in the building for all of about ten or fifteen minutes, until I just had to get out due to the smell. I went right home and took an antihistamine and some extra strength Tylenol for the headache I could feel coming on. It was a little discouraging, but I am encouraged that the new cleaning products are being used. This is one of those experimental small (very small) buildings with the chapel in the middle and a hallway all the way around (which makes a great race track for toddlers during meetings) and very small classrooms. It has very poor air circulation, with little or no exchange with outside air, and the windows are never opened, so it could take a really long time for the carpet and upholstery to outgas. The other building here in Helena has even newer carpet, so attending church there is not an option either.

Fortunately, I was able to attend church one week in Virginia in an old brick building that was anything but airtight. So I guess my church attendance will be restricted to visits out of town. Sounds like a good excuse to travel to me.

Mourning

2008-07-30T05:49:00.000-06:00

No, no one close to me has died, but I have been part of a discussion on another blog about mourning, and it got me to thinking (ahhh, very dangerous). I am a firm believer in mourning, not just for the loss of a loved one, but for the loss of other things too, like one's health, one's home, one's lifestyle or anything that we care for.

I know that when I was diagnosed with celiac disease ten years ago, I mourned the loss of foods I would never taste again, like homemade whole wheat bread dripping with melted butter or a fresh sugar doughnut from the Scandia Bakery. I certainly went through a period of mourning when we left our home in Washington to move to Montana. (Of course, added to that was the death of my mother, which occured two weeks before the move.) More recently, I have mourned the loss of church affiliation, as I have had to quit attending meetings regularly because of my chemical sensitivities.

So I wonder, what purpose does mourning serve? Does it really help to go to the depth of our emotions? Can we go TOO deep, so that we can't ever truly climb out again? When we go through a period of mourning, how do we regain some balance in our lives?

I'm not sure I have all the answers. I do know that loss and a subsequent period of mourning changes me. If and when I do come out of it, I am not quite the same. The challenge is to be better because of it, happier or more content at least with the new state of affairs. Because mourning is really about accepting change and then going on with life, albeit a different life than we knew previously. I think I'm pretty good at the mourning part but not so good with the going on with life part, or at least with the going on with life and enjoying it part.

Losing Track of Days

2008-07-29T14:44:00.000-06:00

Okay, so I haven't been keeping up with things very well, especially this blog. The past week has been a little crazy with the birth of a new grandson. Here with him and his mom and dad, I can't even keep the hours of the day straight, let alone the days of the week. He pulled his first all-nighter last night, so we are all a little tired today. His dad had to go back to work this morning, and I wonder if he was even able to stay awake on the subway ride into the city.

In addition to helping with a newborn baby, I am in the middle of a major metropolitan area, which I find really disorienting. Last night I went out for a walk around the neighborhood to get some fresh air. First of all, fresh air is not easy to find when you are surrounded by tall buildings and hundreds of rushing vehicles. And then what they call a neighborhood here is nothing like a neighborhood in Montana. In a half-hour walk I saw three major hotels (Hilton, Weston & Holiday Inn), several tall apartment buildings, a large indoor shopping mall, a couple of large federal government buildings, several other office skyscrapers (do they call them that anymore?) and at least a dozen restaurants, not to mention multiple bus stops and a metro station or two. It was between eight and nine o'clock on a Monday evening, and there were lots of people out--in cars, in families, in restaurants, running. It all makes little old Helena, Montana look like a hick town (which it is NOT, by the way).

Our kids here live in a high-rise apartment building, where you only hear your neighbors, never see them (except occasionally in the elevator, but then they are on their ipods or cell phones). It's a different life, that's for sure, and I suspect a pretty lonely one for many of the people who live here. Fortunately, it's only temporary for this family. I have never thought of myself as a country girl, but I'm certainly not a city girl either. Is there something in between urban and rural? Urbal, maybe? Hmmmmmmmm.

Slight Change of Direction

2008-07-25T08:32:00.000-06:00

This blog has become a little stale (more than a little, actually). So, after some thought, I have decided to expand my blogging horizons by just slightly changing directions.

I started this blog with the idea that it would serve as a discussion place for people in faith comminities with multiple chemical sensitivity (MCS). However, I have found it hard to keep up a daily blog with such a narrow focus, and anything less doesn't keep up interest or any discussion at all. I have also found it difficult to reach my intended audience. I tried distancing myself from the Mormon (Church of Jesus Christ of Latter-day Saints) community to gather more readers, but that was not effective. And, frankly, my favorite blogs are written in the Mormon online community.

In my effort to educate others about MCS, I think I have been too impersonal. Part of the reason for that is that I'm a very private person. Recently, however, I have been posting some more personal stories on other blogs, and it occurred to me that I should post them on my own blog.

The other problem I have is that I'm not very social (partly due to the MCS and mostly due to my anti-social personality), and I don't have very many real-life friends, as opposed to cyber-friends. I'm not sure I really need (or want) more friends, but I do need and want to write.

So, here comes the change. MCS is really a part of who I am. I have other issues (like celiac disease, fibromyalgia and arthritis) that are part of the physical me, but I don't think about them most of the time. They're just there and I've learned to live with them. I've also learned to live with my MCS, but the rest of the world, even my family and church world, has not learned to live with it, so it causes no small amount of conflict in my life. I am intent on managing and demolishing that conflict as much as possible.

Thus, I will continue to include aspects of MCS in my blog, as it pertains to my daily life and as I gather information that may be helpful to others. However, I am more than just a person with MCS. I am part of the Mormon community (more cyber than local). Within that context, my more passionate interests include family relationships (mothering, grandmothering, wifing), women's rights, history, literature, writing, printing and publishing, MCS, religious thought, earth stewardship and other things I just can't remember at the moment.

So, I'm going to stop worrying about whether or not anyone is reading this blog and just make it more interesting to write. That means that if anyone else does read it she/he may not agree with me. I may even step on a few toes. That is not my intent. Rather, my intent is to be honest and to explore life from my Mormon MCS viewpoint. Who knows? Maybe I will learn a thing or two in the process and become a better person for it. I hope so.

[Note: anyone reading this blog will just have to put up with my vocabulary. I like to make up words, and I'm a terrible speller.]

New Grandson

2008-07-24T18:10:00.000-06:00

I have been in Virginia for the past week with my daughter and her husband, waiting for her to give birth to her first child. Jack was born this morning at 1:15 am and weighed in at 9 lb 8 oz and measured 21 1/2 inches long. He's adorable, of course, and hardly looks like a newborn at that size.

While his mother was in labor with him all day yesterday, I cleaned their apartment from top to bottom. It wasn't all that dirty, but it gave me something to do, and I want the place to be as clean and non-toxic as possible for Jack's arrival here on Saturday.

This young family is living in a large apartment building for the summer, and I was a little concerned about being here for a couple of weeks. The only real problem I've had is with the elevator. It seems that there is someone who sprays perfume on herself in the elevator as she is leaving for work in the morning. Fortunately, there are three elevators, so sometimes I've had to wait for a different one. It makes me appreciate my free-standing home surrounded by a chemical-free yard. The big city life is not for me. I don't know how people with MCS make it in a city.