Tuesday, February 26, 2019

Anza Borrego and then . .

Can you see the crow?
Today, I headed to Anza Borrego to spend a day or three with Merle and Gary. It's milky haze again here today, which bums me out, but the company is good! 
Merle and Gary went to the store and there's a crow complaining on the other side of the gulch!

Saturday and Sunday, my friends Kara and Chris will be visiting at Joe's place, so I'll head back for that. And then Monday, unless plans change, I hope to be on the road headed to New Mexico.

So far, the trip ahead is looking like this for the Southern section:

Quartzsite
Sonoran Desert National Monument
Picacho Peaks State Park
Tucson - Saguaro National Park
Chiricahua National Monument
Lordsburg - Veterans Park
Gila Cliff Dwellings - Grapevine Campground
Truth or Consequences - Elephant Butte Lake
White Sands
Carlsbad Caverns
Roswell
Portales - Blackwater Draw Museum and Oasis State Park
Endee - Russell's Truck Stop
Santa Rosa Villanueva State Park

That's the rough plan going East.
But you know how plans are . . . they can change and turn on a dime!
So we'll see.

I'd like to then head up and come back via old Route 66, more or less.
But we'll see how the weather does and how I do.

Looking forward to seeing some new places!

Happy Trails!
Annie

American Girl Mine

 I’ve had a great time camp the last few days at American girl mine. I made some new friends and met some old friends but my feet are getting itchy and it’s time to move on. I think tomorrow I’ll probably camp at Cibola or continue on to Joshua Tree and spend a few days there. I understand the flower bloom there is beautiful. I will probably go to Anza Borrego after 2 March because a very good friend is visiting that weekend and I want to spend time with her.

Today I took a little walk out to the desert here. There are some tiny flowers blooming and the Ocatillo are ready to pop!


My van is quite cozy!

My Mr. Buddy Heater keeps me warm in the mornings.


Mistletoe?

Ocatillo beginning to bloom



Targets
Found a cool fireplace, except it was built in a WASH!  Doh!

Decorated with some type of coin sprayed gold.

Cibola National Wildlife Refuge - Sunday, February 24, 2019





This morning I'm boondocking in my van on a small plateau, overlooking a sandy wash.  Beyond that is the beautiful desert, green and blooming from the rains. Here and there, a lone saquaro will break the horizon. Beyond that is a line of red, rocky hills. The only noises are the slight breeze, the occasional braying of a lonesome wild donkey, a yipping family of coyotes, and the cries of the waterfowl at the National Park pond a half-mile away.

The sky, beautifully bright blue at dawn, is now a sick milky white from chemical trails sprayed by bioengineers, supposedly trying to block the sun's rays and solve global warming. I believe there's probably a more insidious reason for their spraying, and it probably has to do with chemical warfare and controlling the weather and the food supply. Control the food, control the people. It also has been used (they admit) and could be used in the future, for population control.  Spray a community with a bacteria or virus (or a poison) and watch the old and infirm get sick and die. Scary stuff, but unfortunately, true.


From this . . .
To this in a matter of an hour!

Despite the milky skies, I love this place, Cibola, and I love being alone in my van. Some days I wonder if I'm just a hermit at heart. I've always enjoyed being alone, and though I love my friends and family, I also find strength and solace in empty places. 

As a child, I'd get my chores done early on Saturday morning, then while the other children were watching cartoons, I'd run away to the middle of the orange grove where all I could hear was the buzzing of the bees. I might climb the hills over our town and look down at the ant-like people and cars running to and fro, or hike into the middle of a corn field and lie on my back.  I might swim to an island mid-river where I could lay in the sand with my feet in the cold water, just to be alone.

Being close to nature heals me. I'd rather watch a sunrise than any Oscar-awarded movie. I'd rather listen to the braying of the wild burros or the calls of the coyote family, than listen to gossip, or empty and boring conversations about whatever is popular in today's broken American culture. 

As much as I loved walking the Camino Santiago, it's become too busy for me. Too many people with bad manners. Too much trash.  Too much partying and rudeness.

Now, my van is my escape, though I fear what will happen when the movie based on the book "Nomadland," comes out. It could be the end of van life as we know it, just as the movie, "The Way," was the end of the Camino Santiago in so many ways. Ironically, I was an extra in both movies. I have to ask myself what that says about me?

For now, for today, for this week and this month, and this year, I'll savor this van life.  The quiet gives me time to think, to reflect on my life. The beauty here in nature fills my soul.

Living in nature brings back memories of my grandmother, Ma, who reared me. Pa and Ma had a motorhome and spent the winters in the desert. They'd spend summers in Sequoia National park. She loved that life!  She also loved God's Earth!  We were kindred spirits, Ma and I. She and I would lie on our backs in the grass and watch the passing clouds. Summers, we would hike to Sunset Rock each evening, sit in silence, and watch the sun sink below the horizon, exclaiming at the spectacular colors!  




Ma . . . I miss her so much. I feel her with me when I'm alone in the desert. She's watching those sunrises with me, counting my blessings with me, reminding me to stay positive, and to give thanks for each and every day I wake up alive.

I got so depressed watching the skies milk up, I drove to Joshua Tree to escape the spray. The skies were clear and blue there. You could literally see the curtain where the spray ended.  The desert floor was blooming.  It was beautiful!




I realize some of you are following my blog because of the Camino. I will keep those posts on here. You'll just need to scroll down to posts before 2019.  For a while, I thought I'd keep TWO blogs, one for the Camino and one for my Van Adventures, but it's just become too much to do.  Instead, I'm going to bring the posts about my van over to this page, probably later this week.

I will continue to post about my simple life, and maybe if the crowds on the Camino thin out, I'll return. But for now, I plan on exploring the United States. Last winter I explored Arizona.  This year, I will explore New Mexico.

I hope you'll follow along.

Love,
Annie

Monday, February 25, 2019

To YUMA - February 2019



Yesterday I decided my cabin fever was just too great to stay cooped up another day, so I loaded up the van and headed south to YUMA, Arizona. I found Caravan 3 at Winterhaven, camped at American Girl Mine.

The Caravans were an idea started by Bob Wells of Cheap RV Living after he received so many emails from people asking, "Where can I go and join friends?" and "Where will I be safe?"

As of now, there are 3 Caravans, and you can find out all you need to know at this link: https://www.cheaprvliving.com/caravans/

Caravan 3 is an all-women group, and as of yesterday, was small and intimate. My reason for joining them was to hook up with a couple of old friends from Portland, Oregon that I met as a beginning nomad, as well as to meet new nomads.  Lois Middleton, who has been a nomad for over 11 years, was my first contact in Portland, Oregon. We met at a Starbucks and she let me pick her lovely brains, giving me the courage to set out on my own after selling my home to my son.  Merle Redwing was one of a small group of women I met for dinner before the book signing and lecture given at Powell's Bookstore in Portland by Jessica Bruder, author of "Nomadland: Surviving America in the Twenty-First Century." https://www.amazon.com/Nomadland-Surviving-America-Twenty-First-Century/dp/039324931X  Merle and I began our nomad life about the same time. She travels with her cute little bichon-frise, "Pickle!"

I've been traveling to Quartzsite, Arizona for the winter since about 1997.  It's a well-loved place for snowbirds escaping the snow and ice of their home states.  Many of us met in Quartzsite, Arizona last month after the WRTR for a filming of the movie, based on the book, Nomadland.  The star of the movie is Frances McDormand, and the movie was recently bought by Fox Searchlight.  https://variety.com/2019/film/news/frances-mcdormand-nomadland-fox-searchlight-1203137650/

"The movie follows a woman in her sixties, who after losing everything in the Great Recession, embarks on a journey through the American West, living as a van-dwelling modern-day nomad. Production has been completed."  

The writer/director of the movie was Chloé Zhao, a brilliant and cute gal with a fun personality. Chloé is a Chinese writer and director, also known for her two movies "The Rider (2017)" and "Songs My Brothers Taught Me (2015)." I really enjoyed working with her . She AND Frances made us laugh quite often during the filming. 

American Girl Mine is a strip mine that delivered over 205,000 tons of gold in its boom days. It was later purchased by Newmont Mining, reopened and worked for 10 years, then shut down again when gold prices dropped. It's a sweet place to boondock, now run by BLM, and close enough to YUMA to drive in for a Starbucks fix if you need it.

Also in Yuma is the YMCA, which offers showers for $3 during all open hours.  


Tonight the girls and I are heading to the Quechan Casino for Prime Rib and Shrimp ($12.95) and I may drop $20 in a machine just for fun.

Rain is expected for the day, so I'll be looking for things to entertain me.  It may be a good day to stay in the van and draw. The rest of the week it's expected to be sunnier and warmer, something all the nomads are looking forward to. This has been one of the coldest winters in the Southwest I remember in over 20 years.

Next week is the big bloom in the desert. Looking forward to that! 



Stay tuned!

Annie

Women's Rubber Tramp Rendezvouz 2019 WRTR

Soon after returning to Desert Hot Springs, 
I loaded up the van and headed out for Bouse, Arizona
and the Women's Rubber Tramp Rendezvous!

It was a wonderful experience,
and so nice to meet up with good old friends!

I stopped at the Rise N Shine Bakery for Coffee and Cakes.



Then on to Bouse to set up camp:


Suanne did a kick-ass job!

I did little talk on Bathing in Your Van.
It was fun and we laughed a lot!

Happy to be back in the desert!
Ran into some good old friends:

Merle Crocheting Away!

 Mustang Sally and Nelda
Debbie - also crocheting!


And then there were the sunrises. . .



Several of us traveled back and forth between WRTR and the set of the new movie that was being filmed based on Jessica Bruder's book, "Nomadland," starring Frances McDormand.  It was fun to hang out and be a part of such an awesome project.


Soon, I had to travel to Hanford to care for my mom,
so I didn't make it to RTR this year,
but the WRTR was wonderful!


MCS and Van Life

Yup. This is one of those long rambling posts after an exposure to chemicals, so stick with me please.

Note:  canary in a coal mine is an advanced warning of some danger. The metaphor originates from the times when miners used to carry caged canaries while at work; if there was any methane or carbon monoxide in the mine, the canary would die before the levels of the gas reached those hazardous to humans.


The main reason I chose to live out of my car and then my van was because I have a condition called Multiple Chemical Sensitivities.


I had the opportunity to speak to several women with this condition at the WRTR.   Some, like me, were forced out of houses because of their condition. Most, like me, have difficulty dealing with other people because of the condition, and mostly because people simply don't understand it.

MCS is a recognized disability, no less serious than any other disability. I am on Federal Disability for the condition. However, it is classified as an "invisible disability" because you can't look at me and see that I'm disabled.

Having MCS makes being around other people very challenging. People who do not understand the condition tend to downplay the seriousness of the condition and will respond by saying things like, "I only have a LITTLE bit of hand lotion on."  That's like saying to someone with a peanut allergy, "There's only ONE peanut in that salad!"

Below is a great article by Doctor Ann McCampbell, a Medical Doctor who suffers from the condition. Please read it to educate yourself. It may explain why we with MCS can't shake your hand, hug you, or sit around your campfire. It's not that we're anti-social. We'd LOVE to make friends with you. It's just that your lifestyle and choices, literally, are dangerous for us.

***

Relating to Others When You Are Chemically Sensitive
by Ann McCampbell, M.D.

Becoming chemically sensitive dramatically changes your relationship to your environment. It also significantly affects your relationships with people. For one thing, it is common for those with multiple chemical sensitivities (MCS) to withdraw and become isolated from others. This is understandable, since you usually do not feel very well and the hazards of venturing out in public and being around other people are so great. At the same time, the interactions you do have with others usually become strikingly more intimate. You find yourself asking such personal questions as “What kind of deodorant do you use? What about hair spray? How about your clothes, what detergent do you use? What about Bounce?  Do you bathe or wash your hair every day?” Then you may ask if you can sniff their hair and body—geez, talk about up close and personal.

Asserting Yourself

Becoming chemically sensitive enters you in the triathlon of self-assertion when you have the least energy and stamina to do it! What other people do impacts you so significantly that you need to be in constant negotiations with them, e.g., asking friends not to wear perfume around you, asking neighbors to call you before painting or using pesticides, extensively questioning a doctor’s receptionist about the office environment before making an appointment, asking someone not to smoke, asking your group to become a scent-free meeting, asking your mother to postpone the carpet cleaning and take the scented soap out of the bathroom before you visit, asking pharmaceutical companies for the exact ingredients of a certain tablet, etc.

If you were, like many people, someone who never liked to admit to having needs, these continual requests of others can be quite challenging. You often must fight the feeling that you are a failure for being sick. You must also fight your own denial that says maybe everyone is right and I am asking for too much. You may feel like a pain in the ass and fear others will get angry and abandon you for asking for what you need. Unfortunately, this sometimes happens. At other times, your requests may just be ignored. It hurts when others refuse to become safe enough to get together and/or use products that they know make you sick. For example, your sister wears perfume to the wedding even though you asked her not to; your brother paints his house before you arrive knowing that paint makes you sick; a neighbor sprays the foundation of her house for ants without notifying you as you requested and says, “It’s my house. You have no right to tell me what to do!”

It is an ongoing challenge to set your limits and take measures to protect yourself. This may mean not seeing friends or family members who make you sick, moving across a room to an open window, or leaving a toxic meeting entirely. You may need to wear a respirator or mask in public, and weather the glares, stares, and comments (even insults) often encountered as a result.

Greeting people tends to be another awkward experience for chemically sensitive individuals, since shaking hands or hugging someone can contaminate you with perfume, scented lotions, or other toxic substances. If you elect to keep your distance, others may feel hurt and confused, even if you explain the reason for your behavior. But if you do not protect yourself, you risk compromising your health and/or spending a lot of time rewashing your skin, hair, or clothes. Sadly, it is a common situation that chemically sensitive people often find that they cannot touch, hold, or hug most of their friends or loved ones anymore. If someone approaches you with outstretched arms or a hand, you might say, “I’d love to hug you or shake your hand, but it’s too risky for me because of my allergies … but it’s not because I don’t want to!” Then depending on the situation, you may want to wave, blow a kiss, or make a handshake motion in the air (without touching the other person). Keeping a sense of humor in these situations helps ease the inevitable tension.

The Sniff Test

When people are questioned about the products they use on their hair, clothes, and body, their reactions vary quite a bit. Other chemically sensitive people usually take such questions in stride and just accept them as part of the new ritual when getting together with someone. Others, less familiar with the process, may be shocked and insulted. They may become defensive, saying to themselves or out loud, “How dare you ask such things? It’s none of your business! What’s wrong with cologne, anyway? Don’t tell me what to do! I have rights too! Your needs are excessive! Don’t be ridiculous! You’re too controlling!” You are most likely, however, to run into people who, though uncomfortable with this awkward situation, are still open-minded enough to answer your questions and undergo the “sniff test.” To increase your chances of having a friendly interaction with someone, consider trying the following approach — “Have you ever known anyone with multiple chemical sensitivities? We have a routine we have to follow when getting together with someone. This involves asking a lot of questions about products you use. I hope this isn’t too uncomfortable. I know it probably seems kind of weird, but it is very important that we discuss these things in order for me to protect my health. Thank you for your patience and understanding.”

Sometimes the most difficult people to deal with are those well-meaning folks who make an effort to be scent-free, but who still are not. They may say, “I can’t be scented because I made sure to wash my hair yesterday, rather than today.” They do not realize that the smell of scented products can last for a long time if it is not washed off. Even when hair and clothes are washed in safe unscented products (and dried in a dryer uncontaminated with ant-cling/fabric softener strips), it usually takes numerous washings before the scent is completely gone. It may take several washings to remove scented lotions and perfume from skin, too.

Others also often do not understand that scent can be picked up secondhand, and so may say, “I can’t smell like perfume because I didn’t put any on.” But a person can pick up fragrance by hugging someone or just being around a person who is wearing perfume, wearing clothes that were stored with unlaundered clothes previously worn with perfume, or even walking through a department or drug store. Many people also don’t remember that they may be wearing scented body or suntan lotion, lip balm, or medicated creams.

Some people may insist their scent couldn’t possibly bother you because they buy all their soaps, shampoos, and other personal care products from a natural food store. But even natural food store products often contain synthetic fragrances. And many natural or herbal scented products can still trigger symptoms in chemically sensitive people. Other people may also feel unjustifiably confident their products won’t bother you because they haven’t bothered other chemically sensitive people they know. “I’m sure I’m safe because Bob and Susie didn’t react to me.” But each person’s sensitivities are unique so products tolerated by one chemically sensitive person may not be tolerated by another.

Backlash

No matter how much effort others have put into trying to be safe for you, it is hard for people not to feel criticized when you say, “I’m sorry but I can’t tolerate the products you are wearing, so I can’t be around you today.” People often feel rejected when they hear this. They think you are telling them they smell bad, that is, they hear “you stink!” They may get angry and try to put the blame on you -– “Why can’t you be less picky? Hey, it’s only a little perfume, or flea powder!” Like those who can’t accept a recovering alcoholic’s need to completely abstain from alcohol –- “Come on, surely you can have just one glass of wine, it’s Christmas!” — others may wonder why you can’t just buck up and put up with their perfume or cigarette smoke for a little while.

To confuse matters further, sometimes chemically sensitive people can tolerate moderately increased exposures. But usually this is only when they have reduced exposures beforehand, rested in preparation, and can afford a long recovery period afterwards. It should be noted, however, that this is only true for some chemicals for each individual. Other chemicals, for example pesticides, may need to be strictly avoided. And for those severely ill with MCS, voluntarily increasing any exposures may never be an option.

Dealing with Disbelievers

More opportunity for self-assertion arises from the fact that most medical doctors do not believe multiple chemical sensitivities (MCS) exists. They may think you are hysterical or have an irrational fear of odors. They seem to ignore the fact that you can react to chemicals by touching and ingesting them, too, and that when you smell something you are also being exposed to it by breathing it in! From their viewpoint, your requests seem absurd. Hence, you may be accused of trying to manipulate your loved ones, co-workers, health practitioners, and social service providers. Doctors may be quite arrogant about their views and say ugly things like, “Get out of my office, there are really (genuinely) sick patients waiting to see me!”

Frequently this disbelief also has to be battled during fights for Social Security, Workers’ Compensation, and disability benefits; health insurance reimbursements; in homes health (attendant) services; Vocational Rehabilitation services; and in litigation against perfume, pesticide, and carpeting companies. Because it is not unusual to run into these hostile reactions, consider bringing a sympathetic friend to your doctor and other appointments, whenever possible.

Painfully, some of your family members and friends may not believe you are really sick either. There are many reasons why they may deny your illness rather than accept and deal with it. They may feel overwhelmed at the magnitude of changes they would be required to make to accommodate you. They may find it too painful to accept how sick you are and how much you have had to give up. Or acknowledging your illness might threaten their precarious denial about some health problems and/or sensitivities they are starting to have themselves. They may also be protecting an addiction to cigarettes, alcohol, and food, or a psychological dependence on perfume/cosmetics.

Aiding their denial is the fact that many chemically sensitive people look perfectly healthy, even when experiencing symptoms. In other words, it is frequently a hidden disability. Additionally, many chemically sensitive people lose their ability to think and speak clearly when chemically exposed. It then becomes almost impossible to tell someone who is knocking you out with their perfume or cologne, for example, what’s going on. Hence, fragrance-wearers are frequently unaware of the havoc they are wreaking, and continue to feel falsely confident that their fragrance is not a problem.

Some people also think (for some strange reason) that if something isn’t bothering them, it shouldn’t bother you –– “Hey, I don’t smell anything,” implying that you couldn’t possibly be reacting to it. Further doubt arises in observers when people with MCS react to chemicals with outbursts of rage or tears. It can appear that MCS is strictly an emotional problem. But these emotional symptoms can be caused by alterations in brain chemistry that result from chemical exposures. Frequently, these symptoms will quickly disappear when the person is no longer being exposed to the inciting chemical(s).

Particularly abusive attitudes you might encounter are from those who misuse the New-Age principle that everyone is responsible for their own health. This concept may be used to justify comments or insinuations that “if you’re sick, it’s your own fault,” and “you just don’t want to get well.” You might also be told that illness is God’s punishment for sin. Attitudes and statements such as these are extremely cruel and uncalled for. However, there is a bright side—anyone who blames you for being sick at least admits you are! You might respond to comments like these by telling people that what they said hurt you. You can also say that you don’t believe the reason anyone gets (or remains) sick is as simple as they are suggesting.

Changes in Relationships

Many chemically sensitive people experience changes in their significant relationships. Some of these are typical of anyone with a severe chronic illness. For instance, friends often drift away. Some try to fix you, then become frustrated when you remain sick, and stop making contact. Others feel awkward and uncomfortable with your illness and leave right away. If a friendship was based on a common activity that you can no longer participate in, it is hard to keep that relationship alive. After all, you can only talk about old times for so long.

Severe illness can be like a strong wind that blows loosely connected people out of your life. The stronger attachments tend to survive, and it may surprise you who they are. For instance, your closest friends and family may disappear (at least initially) while others you felt less close to may maintain, and even deepen, their relationship with you. It is helpful to remember that just as you must grieve the loss of your health, others must grieve the loss of their healthy friend or family member. Everyone will do it in his or her own way. Keeping this in mind may help you take their reactions less personally, and help you feel less rejected.

As noted above, family relations often change when you become chemically sensitive. Family members usually find it very painful to see you suffering. They typically are filled with many conflicting emotions. Sometimes, your parents and siblings may amaze you with their compassion and support—emotional and financial—especially if this did not characterize your previous relationship. But other times family members may withdraw and/or criticize you for screwing up your life. Your parents, in particular, may be angry at you for being sick. Often this is because they feel responsible for you and are frustrated that they cannot make you better. In addition, they may resent (or be fearful about) spending their savings or going into debt to financially support you. Your siblings may also be upset if you are draining your parents’ resources. They may be afraid they will be expected to support your parents (and probably you) if the money runs out.

Your relationship to your mate often changes dramatically, too. It is common to become financially and physically dependent on your partner when you are seriously ill. This significantly increases your partner’s workload and expenses, and can threaten your autonomy and self-esteem. Resentments are common among well partners who must shoulder extra responsibility at the very time that they have lost their healthy lover and best friend. They may also wonder “what about my needs?” but be hesitant to take time for themselves for fear that doing so would interfere with taking the best care of their partner. They may also wish to avoid conflicts they fear might make their partner sicker. You, on the other hand, may feel guilty about not pulling your own weight and suffer from the fear your health will never improve.

Your ability to take care of your children will also be affected by your illness. You may be too exhausted or not feeling well enough to keep up with normal caretaking activities. Your chemical sensitivities will also limit the places you can go and things you can do with your children or partner. They may be resentful, too, of the changes that must be made in their home and lives to accommodate your needs. When both partners are ill, there is usually more understanding between you about what it means to be sick. But the going can get very tough when you are both doing so poorly that you can’t be there for each other, emotionally, physically, or financially. (For more information on committed relationships and chronic illness, see Appendix A.)

One thing that has helped many chemically sensitive people improve their relationships with their family and friends has been to give them information about MCS. Seeing magazine and newspaper articles, videotapes, and pamphlets about chemical sensitivity often helps convince them you have a serious medical problem and that many others have it as well. This validation usually increases their compassion for you and makes them more willing to take your health needs into account. Attending MCS support groups open to family and friends may also help your loved ones cope with your illness. Care-giving spouses/partners may even want to join a group or organization designed specifically for them. And giving others a list of personal care products that you can tolerate will make it easier for them to use products that are safe for you to be around.

New Relationships

Although your relationships with others often become strained or lost, and some people in your life may sorely disappoint you, you may also find unexpected love and compassion now that you are chemically sensitive. Just when you are at the end of your rope dealing with people, you may encounter an especially considerate social worker, nurse, clerk, attendant, therapist, neighbor, landlord, or doctor. What a refreshing experience that is! And when you least expect it, friends and family members initially reluctant to interact with you may show more interest and a newfound willingness to change their personal care products to ones that will allow you to get together.

There are many sources of new relationships, too. You may find new friends as you pursue different hobbies, jobs, and other activities that are more tolerable for you. Many chemically sensitive people become involved in groups or classes that focus on spiritual, health, or environmental issues. Belonging to organizations for chemically sensitive persons and/or attending MCS groups/meetings can also be an important source of support. Very close friendships often develop with other chemically sensitive people, who understand what you are going through as few others can. You may also find love and support from healers, doctors, and other health professionals with whom you develop special relationships. Having attendants is a very intimate (and challenging!) experience that often leads to long-lasting friendships. And friends can often be found among members of disability rights groups. Although you’re likely to have to educate these groups on your needs concerning personal care and other products, they are more committed to the principle of access for all than most people.

New Ways of Relating

It is common for chemically sensitive people to alter their ways of relating to others. For example, those who have tolerable phones or computers can make much more use of electronic communication for both business and pleasure. Communicating by phone, video, text, or email can be of great help in connecting you with others when:
You are too sick or fatigued to leave your home or have visitors
The people you want or need to interact with are smokers or too scented
The places you would have to go to meet them are too toxic or too far away

It is possible to place mail orders, talk to friends and family, and even consult with your doctor, work with a psychotherapist, and be interviewed by social service agencies over the phone. Sometimes MCS support groups meet by teleconference. It’s not unusual for long-lasting friendships to develop over the phone between chemically sensitive people who have never met face to face. Computer chat rooms and bulletin boards offer other ways to meet and interact with others.

Speakerphones can be set up at meetings you cannot attend in person so you can still participate by calling in. Having three-way calling and call waiting is often helpful, too. While interacting with others on the phone may not be as satisfying as getting together in person, many chemically sensitive people have found that it is an invaluable way to prevent them from feeling so isolated and lonely.

Wired landline phones are better tolerated than cell phones for those with electromagnetic (EMF) sensitivities. Using the speaker function on a landline or a cell phone its always a good idea in order to reduce exposures to EMFs and chemicals that may be off gassing from the phone. Regrettably, landlines may be phased out in the future.

More use of the mail can also be helpful for people with MCS. However, many chemically sensitive individuals must air out their mail for hours or days before reading it –- by hanging it on a clothesline or putting it on a table in the sun. This reduces the amount of formaldehyde and other chemicals that emanate from fresh ink and paper. It allows perfume that often contaminates the mail to dissipate, too. People with MCS often do much of their shopping by mail by ordering food, clothes, medicine, filters, supplements, and other items from companies that sell organic and low toxicity goods. You can contact MCS support groups and organizations for these mail-order sources. For some people with MCS, corresponding with friends is less taxing than talking with them on the phone. Exchanging paper or electronic photographs with people who you rarely or never see in person can also help connect you with them. And, in order to avoid or minimize time going to toxic offices where you’d be exposed to harmful substances, you can often sign forms by having them mailed, faxed, or emailed to you.

There are times, however, when you cannot avoid making a personal appearance.  For example, you may need to see a doctor, renew your driver’s license, or go to court. Or you may have a strong desire to see someone in person or attend a particular event, even though you are likely to be exposed to substances that will make you sick. In these cases, there are a few things you can do to help protect yourself. A good start is to request that the person or group that you plan to interact with refrain from wearing perfume or other scented products. But since people are rarely able to be totally unscented, it is sometimes preferable to meet them outside — on a patio, or in a park, or at the beach, for example.

You can also wear a cotton mask, with or without a charcoal insert, or an industrial respirator to filter the air you breathe. These are best used, however, when you plan to do more listening than speaking, since it is usually difficult for others to understand what you are saying when you are talking through one. (See Appendix B for more information on masks and respirators.) Carrying and using oxygen is another measure that has helped some people with MCS reduce reactions to exposures. (Note that you need a doctor’s prescription for oxygen and usually need to air out plastic tubing before it is tolerable.) If you must be indoors, it is often helpful to open the windows in the home or office you are visiting and/or take along a portable air filter.

Besides environmental concerns, social events involving food (most of them!) can be particularly difficult for chemically sensitive people. Because of their food allergies/sensitivities/intolerances, most people with MCS have some amount of food restrictions that range from minor to severe. Therefore, it is helpful to ask the host or hostess in advance what will be served. Then you can decide whether to skip the event altogether (especially if just the smell of the food would make you sick) or participate in one of the following ways.

If your food sensitivities are not too severe or extensive, you may be relieved to find that you will be able to enjoy what is served. If not, you may want to eat before or after you go to the event, and just socialize or sip on a beverage when others are eating. Or you can bring your own safe food to eat when others are served (though some restaurants do not allow this). If you think you will be able to eat some food that is served, you can bring enough safe food to just supplement and/or flavor your meal. It’s not a bad idea, however, to bring along extra food in case you are not able to tolerate the food that’s provided. Sometimes a host or hostess is willing to adjust the menu to something that you can eat, or perhaps fix you a special separate meal, if contacted well in advance of the planned event. Gourmet cooks may even welcome the challenge of planning a meal with your food restrictions in mind!

Even extremely food-intolerant individuals have managed to socialize around food by having carefully planned potlucks. At these gatherings, guests only bring foods that everyone can be around and most can eat. The exact ingredients are listed on a card beside each dish so that no one will be accidentally exposed to food or spices to which he or she is allergic or intolerant.

Sex

Developing or maintaining a sexual relationship is undoubtedly one of the ultimate challenges for chemically sensitive individuals. The term safe sex takes on a whole new meaning! Co-mingling body fluids and being exposed to your partner’s bacteria and yeast can be risky business – whether your partner is infected with a disease or not. Kissing someone’s skin or lips is definitely a much more chemically intimate experience than just touching that person with your fingers. Some unfortunate people with MCS even react symptomatically to just the scent of their aroused partner!

Other factors that reduce sexual activity include not having much energy, mobility, leisure time, or interest in sex. After all, when you don’t feel well and/or are in constant medical or environmental crisis, sex is not usually a very high priority! It is also difficult to find safe barrier devices, e.g., dental dams and condoms that reduce the spread of sexually transmitted diseases, and safe birth control methods. In fact, sometimes just finding a tolerable location for a sexual encounter is a nearly insurmountable obstacle. If both partners are chemically sensitive the above problems are doubled, though ill partners are usually more sympathetic to the challenges than well partners. Despite the difficulties, however, many resourceful people with MCS have, when necessary, been able to redefine their notion of sex and find creative ways to share pleasure with their partner. As is true for anyone, communication, trust, and honesty are essential.

Self Love

Above all, remember that even though you can’t do all the things you used to do, or go all the places you used to go, you are still lovable and valuable! You do not have to be a human doing. All human beings deserve love, respect, compassion, and fulfilling relationships regardless of their health limits and needs.

APPENDIX A

Additional reading and resources concerning committed relationships and chronic illness:

1. THE HUMAN ECOLOGIST, Spring 1991, Number 49

This issue features the following articles:

Dear SAM

When You Both Have MCS

Five Tips For Well Partners

My Life With Rebecca: How a Husband Lives With His Wife’s EI (Environmental Illness)

2. MAINSTAY: FOR THE WELL SPOUSE OF THE CHRONICALLY ILL

A moving personal account and companion guide by Maggie Strong.

Little, Brown & Co., Inc., Boston, MA, 1988 (Hardcover)

Viking Penguin, New York, NY, 1989 (Paperback)

The author offers strategies for coping with a partner’s long-term illness/disability. Though written by a woman whose husband has multiple sclerosis, many issues are similar to those faced by couples where one partner has MCS.

3. WELL SPOUSE ASSOCIATION

63 West Main St., Suite 14

Freehold, NJ 07728

732-577-8899

www.wellspouse.org

This is a national non-profit organization for anyone married to, or a partner of, someone who is chronically ill. It was founded in 1988 by well spouses/partners who were inspired by Maggie Strong’s book, Mainstay. It provides a newsletter, online forum, local meetings, telephone support groups, and other benefits to members.

APPENDIX B

Face Masks and Industrial Respirators

Wearing face masks or industrial respirators reduces the amount of pollutants that you breathe. This can increase your ability to be out in the world. Many chemically sensitive people swear they “never leave home without it.“

Industrial respirators are much more effective at filtering out unwanted substances, and are easier to breathe through, than masks. They do, however, tend to be heavier, bulkier, and more expensive.

Chemically sensitive individuals differ dramatically in their ability to tolerate the materials used in masks and respirators. The products mentioned below have been used successfully by at least some people with MCS, but you will have to try them yourself to see what will work for you. Extremely chemically sensitive people may not be able to tolerate using any of them.

Note that masks and respirators can never completely block airborne pollutants. They also do not protect your eyes and skin from harmful exposures.

Face Masks

Cloth: Some chemically sensitive people just hold a folded-over white handkerchief or other piece of tolerated cotton or silk cloth over their mouth and nose to help filter the air they breath.

Masks with Charcoal: These provide a better barrier to inhaled fumes than using cloth alone. Some masks have charcoal inserts that can be changed periodically. Others have charcoal embedded in the mask material. These disposable masks are usually made of lightweight paper or felt-like material. They are designed to filter various dusts and mists, but usually can also filter car exhaust and other fumes to some degree. Some people have trouble tolerating the paper-like materials and/or elastic straps of these masks, while others swear by their convenience, comfort, and efficacy. It usually takes some trial and error to find if there is a brand and model that will suit you.

Two masks that are popular among chemically sensitive people are the 3M #8247 Dust/Mist mask and the I Can Breathe! mask. Sometimes wearing more than one mask at a time or a combination of different masks is more effective than using a single one. Note that masks that do not contain charcoal and are designed to filter viruses, dust, and other particles do not filter volatile organic compounds like formaldehyde, perfume, and pesticides.

Masks can be found in industrial supply or paint stores, but I don’t recommend going into those stores yourself!

Masks can be purchased from:

E.L. Foust

NEEDS

American Environmental Health Foundation

Industrial Respirators

The half face respirators mentioned below consist of a pliable face piece (that covers your mouth and nose) and replaceable filter cartridges which are attached to it. They each have two cartridges and, hence, are called dual cartridge respirators.

Make sure you get a silicone face piece rather than a rubber one. Even silicone face pieces usually must be baked in the sun and/or soaked in baking soda for 1-2 months (or until the “rubbery” smell is sufficiently gone) before using them.

There are a variety of filter cartridges to choose from and what works for one person may not work for another. Individuals may differ in which pollutants are most important to screen out and in their ability to tolerate the filter cartridges themselves.

Filter cartridges that remove or reduce organic vapors and acid gases are the most effective in filtering perfume, smoke, pesticides, cleaners, building materials, and other chemicals that are most problematic for people with chemical sensitivities. These cartridges contain carbon to filter these chemicals. They also remove a certain amount of particulate matter, such as dust, mold spores, pollen, and smoke particles, but using filter cartridges that contain particulate filters offers more protection from these substances. Filter cartridges for organic vapors and acids gases usually come with or without a particulate filter. The advantage of having a particulate filter is its ability to block more particulate matter, but the cartridges are usually bulkier and heavier than cartridges that just filter organic vapors and acid gases, and some individuals do not tolerate the paper-like filter media in particulate filters.

In the past, I found the Willson half face respirator to be the most tolerable respirator available. It has a blue silicone face piece that aired out well. But the Willson company was bought by Survivair and then by Honeywell and they have discontinued its manufacture. Honeywell sells a North respirator that also has a silicone face piece, but it is black and very smelly. (Note that the darker the dyes in clothes, plastic, and other materials, the less tolerated they usually are by chemically sensitive people). The North respirator can take 4-5 months to air out and may never outgas sufficiently for some individuals.

Probably the most tolerable respirator currently available is the 3M 7500 series. It can be ordered online or may be available in local paint or industrial supply stores. It comes in small, medium, and large sizes. Small or medium sizes fit most women and medium or large sizes fit most men.

While the respirator face piece needs to be aired out before using it, this is not necessary for filter cartridges. The frequency with which you change the cartridges is up to you. Manufacturers often recommend changing cartridges frequently, but this usually assumes a worker is wearing the respirator day in and day out at work. Since I wear my respirator for only several hours at a time a few times a week, I find that I can use cartridges for many months to a year before needing to change them. I change them when I feel they are not filtering as effectively as they previously did. To extend the life of the cartridges, it can be helpful to put the respirator outdoors in the sun after you have worn it to polluted places, like stores and airplanes, to let it offgas