Christmas Greetings

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

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

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

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

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

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

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

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

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...

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

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

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

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

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

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

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...

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

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

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

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

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

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

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

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

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.”
###
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

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

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

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

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

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.

Quiet Summer

It's a quiet summer night here in Helena, Montana (except for the chirping of the crickets and the clicking of my computer). The air is clear, the night is cool, and we haven't had any fires to speak of yet, because we've had rain right into July. I hope it stays this way all the way into September.

I'm off to Virginia for the birth of another grandchild. The air won't be as clear there, nor as cool, but my daughter is all prepared for me with a scent-free apartment. I do have a great family who are very protective of me. I was just remembering the other day an incident several years ago when I walked into a department store with one of my daughters, and a sales clerk stepped out in front of us and started to spray perfume in our faces. Almost before I knew what was happening, my daughter was out in front of me yelling something to the effect of ,"What are you trying to do? Kill my mother?"

It's nice to be loved.

Plastic Shower Curtains, et al

When I was a young teenager in the early '60s, my parents bought a new car with vinyl seats. I remember someone in the family exclaiming over the smell. It was new to us, because vinyl was a fairly new product (our old car had cloth seats, as I recall). My mother thought it was great, because she could just wash it with a wet dishrag when my youngest brother made a mess with his ice cream bar from A & W. Everyone heralded plastics as the new wonder fabric. Little did we know...

Several articles have come through my email box recently about plastic shower curtains. Now, I haven't used one of these for at least twenty years, not since I discovered the tightly woven fabric ones that you can toss in the washer and dryer. But it seems that science has finally caught up with itself, admitting that these things are toxic. Scientists are now saying that a plastic shower curtain releases more than 100 toxic chemicals into homes, including some suspected of causing cancer or hormonal abnormalities in children, especially boys.

One research study tested five curtains over a 28-day period and found 108 volatile organic compounds which can irritate the eyes, ears and throat and damage the liver, kidney and central nervous system. So the next time you smell that "new car" or "new shower curtain" smell, just do what we did when I was a kid--hold your nose and say, "P U."

Chemicals and Kids

My daughter called me yesterday to tell me that she has the cleanest windows in town. With three little boys, that's no small accomplishment. The best part of the story is that the boys can do the cleaning themselves, because she just puts a solution of vinegar and water in a spray bottle, hands it to them with a clean rag and says, "Go to it, boys." She's a good mom, and her boys are learning several valuable lessons, not the least of which is that a clean house and a chemically safe house are not mutually exclusive.

In an article from the online magazine deliciousliving, some staggering statistics are given about kids' exposure to toxic chemicals. A study done by the Environmental Working Group (EWG) and released in 2007 reveals that children, on average, are exposed to 60 chemicals daily by way of personal care products alone. Of those 60, just over half of them have been assessed by the government for safety.

It makes sense that children are more susceptible to chemical exposures due to their smaller body weight and thinner skin (our skin doesn't reach full thickness until the age of 20). Also, children have immature immune systems, which make them less able to process the chemicals that get into their bodies.

My youngest daughter is expecting her first baby this month, so I have been shopping for baby things, and I am amazed at all the different care products on the market. When my babies were little, my arsenal of products consisted mainly of an unscented bar of soap (for washing), a box of cornstarch (for everyday diapering) and a tube of zinc oxide ointment (for the occasional really bad diaper burn). Most of what I'm seeing on the retail shelf now is highly scented and contains ingredients I can't pronounce.

The good news is that there are some safer products available. The above mentioned article makes several good suggestions, which really are just common sense.

1. Read labels with a sceptic eye. Natural doesn't necessarily mean safe. Look for the USDA Organic seal and don't buy anything that contains compounds with "eth" suffix (like sodium laureth sulfate).
2. Look for "fragrance free" or "no added fragrance." We all know that added fragrances contain toxic substances (which the manufacturer doesn't have to reveal).
3. Use less--smaller amounts of fewer products. Keep it simple.
4. Consult the experts: www.ewg.org has lists of safe products for children and adults.

And just for good measure, here are some recommendations:

Aubry Organics Natural Baby and Kids (this is my favorite brand of care products for adults too)
Dr. Bronner's pure castile liquid soaps
California Baby products
Earth Tribe Kids botanicals
Burt's Bees products

Another Friend Succumbs

We took a quick trip to Portland, Oregon this past weekend to celebrate the retirement of a dear friend. He was the principal of the elementary school our children attended when we lived in Oregon (in a past life), and along with his wife and two children, we developed a friendship that has survived great distance, in time and miles. It was a quick visit, just overnight, but we had time to talk and catch up with each other. To our surprise, in the course of conversation, his wife expressed her dismay at developing sensitivity to fragrances.

I was so sorry to hear that yet another person I know has succumbed to chemical sensitivity, but I was able to sympathize with her as we commiserated over the discomfort of the symptoms (her eyes get all swollen) and the frustration of dealing with insensitive people. This family lives in a beautiful secluded spot on the edge of the city, and they have always been environmentally conscious and used as few chemicals as possible in their yard and home. But she travels for her job and finds it difficult to know when and where she might run into a problem, with perfume or cleaning products.

The more I talk to people about my own problems with MCS, the more I hear of others having problems themselves. Discussion is good, even if it only validates our own feelings. But I think it does more than that. It educates, and it encourages awareness and accommodation for the many people who must avoid fragranced products.

Ahhhhh...Summer

Well, after a very long winter and cold soggy spring, summer has finally arrived in Montana. It is soooo nice to have all the windows open and feel fresh air on the back of my neck as I work. And I like to think that all the stale air that's been bottled up in my house all winter is now flowing out of the windows and into the wild blue yonder.

The first time I had serious problems with chemicals was the winter of my first year in college (back in the dark ages of 1969/70). Living in a small apartment with five other eighteen-year-old young women was not the best idea. But when spring came, and we opened all the windows, I felt so much better.

Of course, there are the outside pollutants of lawn mowers and the garden tiller, so sometimes I have to shut up the house temporarily. But we live on a quiet dead-end street, so there is little traffic pollution, and my office window is on the back of the house, so I don't even get what little there is.

Now, if I could just sit out under the trees in a hammock and read books all summer, like I did when I was ten.

Helping Others Understand

I had an experience last week that I'm still puzzling over. I'm just not sure if I handled it in the best way. It happened in a small local fabric store.

I know; I know. A fabric store is NOT the best place for a person with MCS--way too many chemicals in those brand new bolts of cloth fresh from the factory. But I really needed a spool of thread and a couple of other things, so it was to be just a quick in and out. It was just after opening, so there weren't more than three or four people in the store, including clerks, and I was doing just fine, rushing around to get what I needed, until I got to the check-out.

As my purchase was being totaled a woman came up behind me. I hadn't even noticed she was there when I could feel a bad reaction coming on--head spinning, sinuses swelling, panic setting in--you know the drill. Then I smelled the intense perfume she was wearing and knew I needed to get out of there. I tried to maintain my composure (a hard thing to do in the middle of such a reaction) as I told the clerk what was happening and that I needed to get out of the store immediately.
"Are you having a reaction to me?" the clerk asked.
"No," I said. "It's something this woman behind me is wearing." At which point I turned around and looked at the person behind me. She looked back at me aghast mouthing, "Who, me?" just as the clerk insisted that I had to sign the receipt before I could leave the store. I quickly signed it, mumbled something to the effect of "keep my copy" and ran out the door.

Neither one of these women was in any way rude to me. I don't know if they were apologetic, because I didn't stick around long enough to see. I do know that they both had a very visual example of a person with MCS having a reaction. I was clearly having difficulty breathing by the time I left the store. I hope they took the reaction seriously and didn't just chalk it up to "a crazy old lady." And I hope they learned something from the experience (other than to stay away from crazy old ladies).

Since I get so mentally spaced out when I have a reaction, maybe it would be helpful if I had something pre-planned to say in such a situation. Of course, that would require me to remember what I had pre-planned. I could carry a pre-printed script that I could read--sort of a cheat sheet. Better yet, I could just hand it to them. Hmmm. That's a thought.

Chemical Free Public Parks

When my son was just a toddler (back in the '70s), we decided to take a day trip to a state park in a neighboring county. It was a beautiful area, situated on the edge of a small lake, with lots of trees shading the walking paths and a nice picnic area. As the three of us walked hand in hand, our son started to sneeze and get a runny nose. Within just a short time, his little face started to swell, and, recognizing an allergic reaction, we left immediately. By the time we got back to town, he was having difficulty breathing, so we rushed him to the hospital emergency room. Needless to say, it was a tense experience.

Like any concerned parent, I wanted to know what had caused this reaction in my child so that I could prevent it from happening again. After a few phone calls, I learned that this park had been sprayed with a pretty hefty dose of chemical pesticide/herbicide just days before we were there. I also learned that all the state parks were sprayed in similar fashion on a regular basis. That was the last trip we made to a state park in Mississippi.

Chemical pesticides and herbicides are still used regularly in public parks--city, county, state and federal. However, it is encouraging to hear that some local governments are taking a more environmentally and people friendly approach. In Albemarle County, Virginia (where my lovely daughter Becca lives), the county board of supervisors has just instituted a new policy of using only organic means to control insects and weeds. And in Durango, Colorado, a group of concerned citizens (mostly mothers) banded together and convinced the city to make their newest park (Brookside) chemical free.

Elected officials and public service employees work for the public (that's all of us), and my experience has been that they are generally pretty receptive to public input, especially if many people make comments. We do have an influence on what happens in our communities, as evidenced in Virginia and Colorado. Our county commissioners here in Montana are currently in the process of creating new zoning regulations to address the problem of chemical contaminants in the ground water (there largely as a result of what people put on their lawns and in their septic systems). All local governments are required to have public comment periods before they pass new regulations, so I want to be a part of this process. My life, and the lives of my children and grandchildren, are at stake.

Getting Public Attention

In an effort to distract myself while tackling a basket of ironing last week, I watched a full two-hour movie on a commercial television station. In almost every ad break, there was an advertisement for some product to which I would have a reaction. These included cleaning products, scented laundry products, perfumes and many varieties of air fresheners. These toxic products invade our lives on every turn, and millions of dollars are spent to convince us that they are necessary in our daily lives. Since I don't buy these products, I don't usually notice their advertising, so this experience was an eye-opener for me.

On the other hand, I wondered how much attention is paid to the opposite message--that chemicals in our environment are dangerous, even life threatening. So I've started watching for the anti-chemical message. Much to my (pleasant) surprise, I have found numerous accounts of problems with chemicals discussed in various forms of media. Here in Helena, Montana, our local newspaper is not exactly the Washington Post, but I have found at least one article every day this week about the damage being done or the dangers of chemicals of one sort or another. There are three online news sources that I browse several times a week, and I am finding the same coverage there of new studies of, new diseases from and groups opposed to chemical exposure in our food and/or environment. Just last night, tucked in between the primary election coverage on the national news stations, there was a feature about a consumer group trying to get artificial dyes banned from foods because of the negative effects on children.

Of course, information alone with not change the world, but it may help change some personal behavior--what people buy and what they use in their homes and businesses. After almost forty years of dealing with MCS, and the ignorance (sorry, can't think of a nicer way to say it) of people who don't believe that chemicals can make a person so ill, it's nice to see some public attention being turned this way. I am a firm believer that education is the key, and it's gratifying to see people starting to "get it".

Fragrance Free at Church

We have identified at least nine local church members who have chemical sensitivities. Some of the church leaders think it would be a good idea to establish a fragrance free policy for the church building and have asked me for some resource information. Of course, I am happy to give them all the information they need. One of the questions they have asked is what cleaning products should be used in the building and where they can be purchased. I have a list of products that are readily available at local stores, but I'm in a quandary about what they could use in the soap dispensers in the restrooms.

Restroom soap is a real problem for me when I am in public buildings. I had quite a reaction to the soap in the Bozeman airport on our recent trip to the east coast. I'm going to check with the supplier of what is being used in the church building currently to see if they have anything that would be safe, but beyond that, I'm a little perplexed. Personally, we use an olive oil based bar soap in our home bathrooms and a liquid hand soap (Shikai Very Clean Hand Soap) at the kitchen sink (it comes in a pump bottle). I suppose the church could always purchase the individual pump bottles of hand soap also, but that would be expensive, not to mention NOT environmentally friendly.

So this is my quest for this week--to find a fragrance free, chemically safe handsoap for the restroom dispensers at church.

U.S. Kid-Safe Chemicals Act of 2008

A new federal bill was introduced last week into both the House (#6100) and the Senate (#3040) entitled the Kid-Safe Chemicals Act of 2008. This new legislation seeks to replace the Toxic Substances Control Act (TSCA), which was passed in 1976 and has never been amended. When passed, the TSCA declared 62,000 chemicals already on the market to be safe, with little or no data to support this policy. Since that time another 20,000 chemicals have been put into public use, also with little or no data to support their safety.

Testing has shown that newborn babies are "pre-polluted" with as many as 300 industrial chemicals in their bodies. Testing by Environmental Working Group (EWG) has identified 455 chemicals in people. These chemicals are increasingly being linked in children to childhood cancer, autism, ADHD, infertility and birth defects. Of course, those of us with MCS are very familiar with the toxic effects of these chemicals in our own lives.

The Kid-Safe Chemical Act seeks to be a fundamental overhaul of our nation's chemical regulatory law. Some of the things it would require are the following:

+industrial chemicals be safe for infants and children;
+new chemicals be safety tested BEFORE they are sold;
+chemical manufacturers test and prove that the 62,000 chemicals already on the market that have never been tested are safe in order for them to remain in commerce;
+EPA to review "priority" chemicals, those which are found in people, on an expedited schedule;
+regular biomonitoring to determine what chemicals are in people & in what amounts;
+regular updates of health & safety data & provide EPA with with clear authority to request additional information & tests;
+incentives for manufacturers to further reduce health hazards;
+EPA to promote safer alternatives & alternatives to animal testing;
+protection of state & local rights;
+that this information be publicly available.

There is more information about this proposal at http://www.ewg.org/kidsafe . Since this legislation was just presented last week, it will take some time for it to get through committees and review and come to a vote in the Senate and House, but it is something I intend to follow closely. I'm sure that the chemical manufacturers have their lobbyists already lined up to fight this, but my sense is that the public is ready for this change. And putting it in the context of protecting children will gain even greater public interest.

The Next Generation

I had a fun day yesterday playing with three of my grandsons. While they watched a video in the afternoon, I hemmed cotton flannel swaddling blankets for another grandson who will be born in July. Sometimes I get very discouraged in my efforts to educate people and create a safer and healthier world, free of the chemicals that make my life so unpleasant (I know, that's an understatement, but I'm trying to be nice).

What I have to keep reminding myself is that I am doing this for the next generation. My generation got us into this mess of a chemical stew, and it's unrealistic to think that it's going to be cleaned up overnight. But, when I look at my grandchildren or lovingly stitch a blanket that will comfort my baby's baby, I know that anything I do is worth the effort, because these children are worth the effort. I can't make everything all better, but I can do something, and that's good enough. Just as the chemicals to which I am exposed have a cumulative effect on my immune system, so the little things each of us do have a cumulative effect on the world.

Diet

In the MCS America brochure entitled "Understanding Multiple Chemical Sensitivity", two primary treatments are recommeded for MCS:
1. Strict avoidance of contact with all chemicals, even those one is not sensitized to, as sensitization is more likely to occur with repeated exposure.
2. Proper nutrition to increase nutrients needed for normal detoxification when exposures do occur.

My personal concern and search for a healthy diet began many years ago as I struggled with multiple food allergies and was subsequently diagnosed with celiac disease. We (my husband mostly) have gardened organically for almost thirty years, and I buy almost exclusively organic fruits and vegetables. I don't eat very many prepared foods (i.e. chips, crackers, boxed mixes), and I avoid sugar (though I haven't figured a way to cut chocolate completely out of my diet; it's one of the main food groups, right?). I have no question (and medical science actually supports me on this) that diet plays a big role in overall health.

A more interesting question, however, is what role diet supplements should play in the treatment of MCS. People with celiac disease have major problems with absorption of nutrients from the foods they eat, so vitamin and mineral supplements are essential. But I wonder what effect they have on MCS.

An MCS friend told me a few months ago that she takes glutathione precursor (as recommended by her doctor), but I haven't been able to find any information about what this supplement is supposed to do. The last thing I want to do is recommend any medical treatment to anyone, but I am interested as to what has worked for other people in the way of diet and food supplements.

MCS America and other national organizations

If you do a Google search for MCS organizations, you come up with a very long list of groups which have organized to promote education or provide support for those with chemical sensitivity. (You also come up with some negative stuff, which is not worth the read.) Most of them have interesting and informative websites. My favorite of these websites is that of the MCS America group, www.mcs-america.org .

MCS America clearly states their mission as follows:
To gain medical, legal, and social recognition for multiple chemical sensitivity (MCS) as a disorder of organic biological origin induced by toxic environmental insults.
To provide support and referral services to the individuals with MCS, chronic fatigue syndrome (CFS), and fibromyalgia (FM).
To ensure that environmental toxicants are identified, reduced, regulated, and enforced through lobbying for effective legislation.

I recently joined MCS (which is free--see the left hand sidebar of their home page) to receive their emails (which are several/day). They also have a monthly newsletter (via email) which I have been receiving for several months. The information in their newsletters and daily emails is all very interesting, and I will be referring to some of it in future blog posts.

Another group I have joined is the Chemical Injury Information Network, www.ciin.org . Membership in CIIN is by donation, and they also publish a monthly newsletter (in both print and online versions). I find their newsletter particularly interesting because of the advertising it contains, as well as informative scientific articles.

Both of these organizations have links to yet other groups on their websites. I find that the MCS-America site is a good one to refer people to who know very little about MCS. The information is easy to read and well documented.

Coming Home

I am frustrated today--one of those MCS-foggy-brain days.

Coming home from our wonderful vacation has been difficult. There has been much to do to catch up, especially with our publishing business. I've had to go to the post office almost every day, and that is always a problem. It seems that no matter what time of day I go, there is always a long line and someone with lots of perfume. Such was the case today and I am still reeling from it. The only redeeming part of the venture was my subsequent stop at Real Foods, our local natural food market, which is almost always a safe place for me.

Generally, I try to limit my trips to the post office to one or two a week. This week has been unusual. At least we are having beautiful weather. I think I'll go dig in the flower beds to clear my head.

Chanterelle Country Inn

The Chanterelle Country Inn sits atop a grassy hillside on the eastern stretch of the famous Cabot Trail of Cape Breton Island, Nova Scotia. You can view pictures of the surrounding area at www.chanterelleinn.com , but they don't do justice to the breathtaking vistas. This part of Nova Scotia is particularly remote--like stepping into another time and another world.

The proprietor of the Chanterelle is Earlene Busch, an MCS sufferer who came to Cape Breton from Boulder, Colorado about eight years ago and decided to stay. Her stepfather is a physician back in Colorado, specializing in environmental medicine, and he helped her design the inn to accommodate the needs of people with extreme chemical sensitivities.

Earlene's interest in good health, along with the remoteness of the area, prompted her to include a restaurant at the inn also. But when she went looking for a chef, she found no one with her same food philosophy. Not to be dissuaded, Earline spent one winter at a fine culinary school so that she herself could be the chef at her new inn and restaurant. The results are beyond description. We let Earline feed us all three nights we were guests at her inn (as well as breakfasts, of course), and we have never eaten better tasting or healthier food in our lives. From locally raised lamb to organic egg omelets (made with local goat cheese) and creme brulee for dessert, she spoiled us quite thoroughly.

Earline's slogan for the Chanterelle is "the place to just be" on Cape Breton, and that aptly sums up the experience. If I were to go again (and I sincerely hope I will someday) I would go in September, when the leaves are changing, and stay for a week of just sitting on the screened porch and walking the trails through the surrounding woods.

Bed of Roses by the Sea

This is an appropriate name for the chemical-free bed and breakfast we stayed in on Prince Edward Island. Though the roses weren't in bloom the last three days of April, we truly felt like we were cradled in luxury. In fact, Aravinda and Jasmin, the fine hosts who run this establishment, often refer to it as the "Cradle on the Waves."

The home sits on the edge of the North River in Charlottetown, PEI. One morning we watched the fishermen raking for oysters as we ate our custom made breakfast of homemade yogurt, fresh date muffins and home-grown peppermint tea. The hosts are originally from India, and it was a delight to share in other ethnic breakfast foods as well.

Beyond the beautiful room and delicious food, we enjoyed stimulating conversation with two people who instantly became friends. Their understanding of chemical issues is prompted by a sincere concern for all people and the stewardship of the earth which we have all been given. Their multi-cultural perspective was enlightening and has inspired me to think about chemical issues from a broader view. There are things which I can do to change the world, even though I am only one person. Jasmin and Aravinda are such good examples of two people who practice what they believe. They are not chemically sensitive themselves, but they have a genuine concern for those who are and for the world as a whole. Though it is their goal to return to India in the next year, they will continue to run the B & B in the meantime. I cannot recommend it highly enough.

English Garden Bed and Breakfast

The wanderer has returned to Montana after two wonderful weeks of traveling on the eastern seaboard of the U.S. and Canada. I have to sing the praises of the places we stayed, starting with the English Garden Bed and Breakfast in Dartmouth, Nova Scotia (just across the river from Halifax). We found this scent-free B & B through an internet search. It's a beautiful large home in a residential neighborhood, close to the airport and very accessible to the sites of Halifax and the coastline. They really take scent-free seriously, as they provide lodging to patients of the Nova Scotia Enviornmental Health Centre (NSEHC), which is located nearby in Fall River.

It was much to our surprise that we discovered at breakfast the first morning that the proprietors of English Garden (the Hunt and Wells families) are LDS. They assured us that I would be safe at church, because the director of the NSEHC (Dr. Fox) is also LDS, a member of their ward and suffers from MCS himself.

I cannot say enough in praise of English Garden B & B. They have beautifully decorated rooms (see them at www.bbcanada.com/englishgarden ). Ours had a huge bathroom with a Jacuzzi soaking tub and a separate shower. A small refrigerator on the landing outside the room made it possible for us to have yogurt and cheese bedtime snacks. The ample breakfast was delicious and even included a gluten free muffin for me. The bed was so comfortable and the air so breathable that I woke up the first morning thinking that I was in my own home. And their nightly rates are the best you will find in the area. We paid less than $100/night for luxury worth much more.

This was just an amazing place to stay and a good start to our vacation. We felt truly spoiled.

Traveling in Nova Scotia, Part 1

I spent the last week in Nova Scotia with my husband as we celebrated our 35th wedding anniversary. It will take several posts to really talk about the experience as it relates to MCS, but suffice it to say that Nova Scotia is MCS friendly. We stayed in three different Bed and Breakfast inns, which were all scent-free, and everyone we spoke with understood, and was sympathetic, about MCS.

We flew into Halifax on Saturday afternoon, and the next day we attended church in a scent-free building. It was the first time I have attended the full three hours of church in many months. What a joy to be feel safe and really enjoy the worship services. As it turns out, there is a well-respected environmental illness clinic in Halifax, and the director is a member of the LDS Church. He suffers from MCS himself, and he has done a great deal to educate people in the area.

Needless to say, it was a wonderful trip. For ten days I felt like a normal person. It was hard to leave, and I'm not home yet. I took a little side trip to Virginia to see our youngest daughter. I am safe in her home too, so it's all good. The only problem I had today was with some people in the airport waiting for the plane to board. Fortunately, they were flying first class, and I was at the back of the plane.