Here I go...

Walking and Talking Across Spain - long distance walking chelates the chemicals that trigger my Multiple Chemical Sensitivities

Sunday, March 19, 2017

Do You Wear Fragrance to Church? Please Don't . . . and Here Is Why.


Last night I attended a church social event. 
Today I'm feeling the results.

Earlier in the week I attended the Temple.
I was there approximately 3 hours.
On the drive home, I suffered from migraine, brain fog, and violent diarrhea.
It was the result of a reaction to perfume.
People are not supposed to wear perfume to the Temple, but they do.

There are days like today when I feel hopeless.

I have tried attending church before. 
It usually doesn't last long - the desire to attend is often outweighed by the symptoms I suffer as a result.

I should have known better, both times, but there are days when I just REALLY want to feel like a normal person and socialize.  However, I should know, after all these years, it's impossible.  I have Multiple Chemical Sensitivities (MCS)  -  and as long as people insist on wearing dangerous chemicals, I can not be around them and expect to remain healthy.

For a person with MCS, exposure to chemical fragrance causes a multitude of symptoms, most of which occur within minutes. 
It is not uncommon for MCS sufferers can have the following reactions:
  • Headaches
  • Irritated mucous membranes in eyes, nose, throat
  • Supersensitivity to smell, sound, light, and touch
  • Difficulty breathing
  • Slurred speech
  • Mood Swings
  • Hyperactivity
  • Dizziness
  • Sweating
  • Palpitations
  • Muscle Pain
  • Diarrhea
  • Nausea
  • Numbness
  • Skin Rash
  • Loss of Mental Capacity
  • Confusion
  • Disorientation
  • Lack of coordination
  • Exhaustion
  • Decreased verbal fluency
  • Problems with cognitive flexibility, calculation, short term memory, attention or concentration, often referred to as "brain fog."
More specifically, symptoms might manifest as
  • Nausea and wheezing when exposed to perfume, fragranced washing powder, fragranced lotion, shampoo fragrances, or air fresheners.
  • Uncontrollable shaking or change in personality when near fragranced trash can liners or when using the telephone covered with residual perfume from someone's hands.
  • Anger or crying when exposed to the print of newspapers, books or magazines.
  • Severe rashes and skin outbreaks, or muscle pain after contact with soap or household cleaners.
  • Becoming disorientated and losing coordination after taking a shower, using a computer, eating food with gluten or strong spices.
The after-effects of chemical exposure can last hours, days or weeks. The effects of exposure are often cumulative, so a high exposure one day can lead to worse chemical intolerance the following week. Because of the escalating effects on health, some individuals do not appear to react at the time of exposure, but can suffer symptoms hours or days later.

Continually reacting to substances commonly results in chronic fatigue, loss of mental capacity and a decline in general health. Many MCS sufferers also become hypersensitive to a vast range of foods, which is why I shouldn't have eaten that cake and those brownies last night!  I knew better!
Avoidance of further chemical exposure is vital to improving levels of sensitivity and general health.
For myself, symptoms can be mild or severe, depending on the type of exposure.
The Brain Fog

For me, one of the most frustrating symptoms of Multiple Chemical Sensitivities can be the brain fog.
Brain fog is an inability to really punch through, says Mady Hornig, MD, associate professor of epidemiology at Columbia University Medical Center in New York City. It's a vague sense of what you're trying to retrieve, but you can't focus in on it and the effort to harness the thought can be as draining as physical activity. 
Brain fog is a commonly used phrase that sums up feelings of confusion, forgetfulness, and lack of focus and mental clarity. And what makes brain fog most frustrating is that it doesn't wait until the day after to begin. It occurs instantly upon exposure to the trigger substance, at least for me.

(Trigger substances are the particular chemicals that cause a person's MCS symptoms to set in, sometimes immediately, sometimes after a few hours.)

So last night, there I sat at a table full of very friendly faces, all with their various perfumes, scented laundry detergents, scented hand lotions, scented shampoo and conditioners, in a small room of about 10 such tables, and people started asking questions.  What's your name? Where do you live? How many children do you have? What are your children's names?  Most of those answers just roll off the tongue.

However, then come the dreaded "number questions!"  How long have you been a member of this church?  How many years have you been single? How many years ago did you work for USFWS? What year did you move to Portland? What year did you start walking the Camino? How long is the Camino Santiago? What is your son's birth date? 

And though you KNOW you KNOW the answer . . . your brain begins functioning the way your computer does when you see that dreaded "circle of doom" that means it is searching, searching, but can't connect or find the answer. Your brain just freezes up and in creeps the brain fog.


You wait.
And wait...
And wait ...
And wait . . . 
And sometimes you get so frustrated at waiting for the answer to come, that you just take a guess. The problem with this is, after a while, your answers don't add up, and people think you're either lying or crazy. 

Remember the last time you tried to work with a horrible flu? Brain fog is like that, except it persists. It can last for hours, days, or even weeks. But eventually, your head clears up and you know the answers to those questions like the back of your hand.

This is the difference between brain fog and dementia, says rheumatologist Robert Lahita, MD, PhD, chairman of medicine at Newark Beth Israel Medical Center and professor of medicine at Rutgers University in New Jersey.  While brain fog may make you forget where you parked your car, dementia would make it impossible for you to get there in the first place.

Various things can cause brain fog, from hormones, medications, antibiotics, to lack of sleep, stress, or toxins in your food. For the MCS patient, it is usually CHEMICAL FRAGRANCES. (By the way, people often ask me if I can't wear essential oils, and the answer is NO!  Because even though essential oils may be labeled "organic," they are more often than not chemically processed.)

From the autoimmune to the neurological, brain fog crops up in people with a wide range of diseases, like fibromyalgia, lupus, multiple sclerosis, and more. If you've been battling prolonged brain fog and it's not related to your sleep schedule or your last feeding frenzy, talk to your doctor about what other symptoms you might have overlooked, like joint or muscle pain, numbness or tingling, headaches, and loss of coordination.

Chronic fatigue syndrome—now called myalgic encephalomyelitis, so we'll go with ME/CFS—is a highly misunderstood condition, but one in which people often complain of feelings of brain fog. (In people receiving chemotherapy, it's referred to as "chemo brain.")Earlier this year, a study by Dr. Hornig found differences in the brain fluid of people with ME/CFS that might help explain the mental cloudiness so common in the disease. Immune-system proteins called cytokines were reduced in ME/CFS patients, she says, "almost like the immune system has exhausted itself." Science isn't totally clear on why these changes might lead to brain fog, but Hornig, also the director of translational research at the Center for Infection and Immunity at Columbia's Mailman School of Public Health, says there are receptors in the brain for the cytokines, which are closely related to some of the receptors for hormones and other brain chemicals. This complex interplay between all of our wiring up there could be making ME/CFS patients foggy, she says."  (from PREVENTION MAGAZINE)


Brain fog symptoms usually include:

  • low energy or fatigue (including chronic fatigue syndrome)
  • irritability
  • trouble concentrating
  • headaches
  • forgetfulness and trouble remembering information
  • low motivation, feeling hopeless or mildly depressed
  • anxiety
  • confusion
  • trouble sleeping through the night or insomnia

Is it REAL?

So, is MCS real or imagined?

The author of a website called QuackWatch states, "Well-designed investigations suggest that most of them (people with MCS) have a psychosomatic disorder in which they develop multiple symptoms in response to stress."  

People who say this are simply ignorant, and I'd love to have them walk in my shoes for a week. There's not much stress in attending a water-aerobics class... that is until you have to leave because someone in the laundry facility is using fragranced fabric softener and the smell is wafting over the pool area.  There's not much stress in attending a church ice cream social, or a birthday party, or dinner at your favorite restaurant, unless otherwise well-meaning people slathered in fragrance want to shake your hand.  

Is it "all in my head?"

Yes, most definitely. 
But it's still very real.

My specialist believes MCS is the result of an overactive Amygdala, the reptilian part of our brain that saves us from being eaten by Tyrannosaurus Rex! It is a broken immune system which has become overactive after continual exposure to dangerous chemicals. (In my case, most like a result of growing up on a farm where we used such chemicals in ignorance and then working on an Oncology ward in a hospital where I was constantly exposed to the chemotherapy.)

This broken and super-sensitive Amygdala causes a fight or flight reaction, which can result in the symptoms listed above, but also in anger, shaking, crying, or instant change in personality.  This reaction kicks in when a person with MCS is unable to get to safety and breathe clean air. 

My specialist explained it like this:

You're daydreaming as you walk down a mountain trail, having a wonderful time. You come around a bend, and suddenly there is a HUGE rattlesnake in the trail and you nearly step on it!  You JUMP backwards!  Your sympathetic nervous system sends out impulses to glands and muscles and tells the adrenal medulla to release adrenaline, noradrenaline, cortisol, and other hormones to the bloodstream. These "stress hormones" cause instant changes in the body, including an increase in heart rate and blood pressure. They give you the strength and agility to get the hell out of the area FAST!


Then you realize it was only a stick across the trail.

It doesn't matter.
The hormones have been released and your nervous system is reacting.



In a normal person, after such an event, the body quickly returns to rest.

However, in a person with MCS, the immune system refuses to turn off.
The reaction is more like a snowball; it gets bigger, and Bigger, and BIGGER! And quite suddenly, the body goes into Fight or Flight.


When I get a few molecules of perfume up my nose, my body reacts as though I almost stepped on that rattlesnake! My cheeks get very red, my brain fogs up, and FEAR sets in along with the tightness in chest and pounding heart. I can't concentrate. I have one focus, and that is on getting OUT of the area.  

For me, the fragrance on your body is a rattlesnake and my brain believes it's going to kill me, and therefore it REACTS, instantly and sometimes violently. I'll do anything I can to get out of the area, which my brain believes is dangerous. 

If for some reason retreat is impossible, watch out! I can become very confrontational. My response may seem aggressive, inappropriate, or just plain weird to people who don't know what's going on inside my brain and body.


For people who know me and understand what's going on, it's not so bad. They just back off and let me work it out. But in a room full of strangers, that's not quite so easy. People react to my reaction, thinking I've got a screw loose. And that is one of the saddest consequences of having MCS. . .  the complete loss of a social life and the support of a caring community. 

MCS is a recognized Disability by the Federal Government.  

I have met more and more people who are unable to attend social events, including church, due to MCS.  We are trapped at home, with no support system. A few hours at church can lead to 3-4 days of flu-like symptoms. It's just not worth it in the end.

A lot of people do NOT wear fragrance, but can pass on the molecules of scent between a scented person and an MCS sufferer without even knowing it. Like the sweet lady who got a hug from a perfumed person last night, then turned to hug me, saying, "I don't have on perfume."  Oh but she did... the fragrance from the person she had just hugged covered the front of her and was transferred to me.

Even if people don't touch me, if they are in the room, the perfume diffuses and soon fills the entire space.  To get a clear idea of what diffusion means, take a clean glass of water and drop in one drop of food coloring. Watch it slowly disperse into the clean water. This is what happens to the air in a room full of fragranced people. Their fragrance slowly permeates all of the clean air. It's not magic, it's science.


You're Wearing Just a Little?

For those of you who object to not wearing fragrance to church, I would respectfully ask you to please prayerfully consider what is most important, as you reach to spray yourself with scent. 

If I could not walk, would you take away my wheelchair ramp? 

If could not see, would you take away my seeing-eye dog?

Then why do you take away my clean air?

And for those who say, "I just put on a LITTLE bit of perfume, " if I had a fatal allergy to peanuts, would you stick even one peanut in the salad you're taking to the church dinner?

And also think about this.
Is it more important to you that you wear the latest fragrance? 
Or is it more important that people with disabilities are able to attend services? 

I have no choice.

You do.

Please make church a safe space for all people.
I'd really love to attend.
But there are days like today it just doesn't feel like it's worth the effort.
I'd rather stay home where the air is clean and feel healthy.
I think God probably understands.






Sunday, March 12, 2017

Walking the Desert in Spring

I do have a few more photos to post on my Puerto Vallarta trip. But I'm in the CA desert right now and the rain we've had of late has caused a wonderful blooming to occur.

Yesterday morning, we got up early and took a short walk to a local Oasis, Thousand Palms.

I forgot my camera, so I apologize for the quality of these photos, some of which were taken with Joe's tablet, and some I've borrowed from the internet.  I'll try to get out into the desert tomorrow morning to get some clearer photos - it's a once-a-year spectacle!

Lovely rose-like blossom. I'm not sure the name of this cactus.

 A few years back, this oasis went up in flames, 
due to the huge amount of fallen dried fronds on the ground. 
It was a pitiful site, tall blackened "trunks" against the blue sky.  
But most of them survived! 
And now the oasis is once again full of life.

Charred "trunk" of a palm, which is truly a grass, not a tree. 


Walking above the oasis.

The trail down was pretty rough.

This is "Desert Lavender." 
 There was a lot of Desert Lavender blooming. It only blooms for a few days. When you crush the flowers, they smell just like lavender. It's luscious.

Cactus blooming outside our house

... and in the desert (from internet)


Looking at the oasis from above.

Brittle Bush

Lupine
The Purple Lupine was everywhere!
Strawberry Hedgehog Cactus
Pineapple Barrel Cactus (from internet)
All in all it was a beautiful (though hot!) walk.
Tomorrow I'll do my best to get out closer to dawn.

Happy Walking!

Wednesday, March 08, 2017

Puerto Vallarta - Las Calletas Beach Adventure

Our second excursion was to Las Calletas Beach.  We took a boat to a bay village, where we rode horses to a waterfall swimming spot.  The waterfall was gorgeous, but I felt a little sorry for the horses. They appeared pretty overworked.  After, they boated us to a bay where the boys did a little snorkeling. I stayed in the boat because it was cold, windy, and the water was choppy but they had a great time!  Last stop was a pretty beach where they fed us lunch and had an open bar.

The boat ride into the village was full!

Once we arrived at the island, we were each given a horse. 
An island home.


We rode for about 30 minutes to reach this waterfall.


There was a small restaurant above the waterfall where we could order food/drink.


Michael and Cameron are having a GREAT time. John is thinking about it.  lol!
"Do you think they bite?"


Mmmmmm.... fresh coconut!

Such a lovely place.

The boys went snorkeling and saw a lot of beautiful fish.
Lunch on the beach after snorkeling.
John hits up the open bar!


We really had a great time on this excursion.
The only "bad" part of the experience was the boat ride back to Puerto Vallarta.
There was a group of drunk guys who kept telling the boat captain to go "faster! faster!"
It sucked because the front of the boat was SLAMMING down into the water.
I was afraid I was going to be thrown overboard.
Cameron held on so tight he strained his wrist.
I finally told the group leader I'd give them a crappy review if he didn't slow down.
He did.





Monday, March 06, 2017

Puerto Vallarta Excursion to Talpa Part 4

One of the main industries in Talpa is candy making. The fruit and sugar is melted in these HUGE rotating copper pots and cooked until it is of a taffy consistency.

Copper cooker

 It's then poured onto a slab, cut and rolled, then wrapped for sale.

Candy Roll


They also sell "bubble gum" which is some type of chewable gum from a local tree. It is dyed and made into fantastic shapes such as baskets, flowers, bugs, and sold to tourists. I bought a few of these and tried them. They don't taste very good, but it's a fun experiment to try!

gum flowers
There is shop after colorful shop full of these and other goodies:



Puerto Vallart Excursion to Talpa - Part 3

Here are a few more photos of our Talpa excursion:

Virgin of Talpa


Hole where the Lady was buried
Penitents

After the trip to Talpa, we were taken to a Bed and Breakfast where a long table was laid with a great lunch! The view from the shady patio was beautiful.









This was the first of three excursions we took while in Puerto Vallarta.
More tomorrow!

Puerto Vallarta! Excursion to Talpa Part 2.

Virgin of Talpa

 



Watercolor by Guy Garber Guerrero


From Mascota, we continued on to Talpa de Allende, which is a cobblestoned mining town founded by the Spanish in 1585.

In Talpa, we saw one of Mexico's most famous churches, Our Lady of the Rosary of Talpa. I was surprised to learn this church is the destination of a pilgrimage walk!

The festivities begin every year on March 24th to commemorate the day the Virgin was unearthed. The fiesta continues for 3 months, till May. Thousands of religious make this pilgrimage annually; sometimes it involves saving pennies all year long. The pilgrimage is a short one, only 117 kilometers, compared to the pilgrimage to Santiago de Compostella, but it is no less important to those who are faithful.

I found this story about the Virgin of Talpa online. It's worth reading:
* * *
Legend of the Virgin of Talpa
by Jenny McGill

October 7th is considered the birthday of Talpa's La Chaparrita, The Little Short One, aka Our Lady of the Rosary.

History tells us that Santiago de Talpa was founded in 1599 with Virgin Mary and the apostle James as the patron saints. A humble church was established where the parroquia (parrish) chapel now stands and a tiny image of Virgin Mary was placed on the altar with a painting of Saint James, riding a horse, hung to one side.

It is believed that the priest, Sanmartin, who was summoned from Spain and given the task of traveling the countryside to convert the natives to Christianity, was responsible for many of the small, light weight images of earlier times. Credit is given to the Cerda brothers, who lived on the shores of Lake Patzcuaro, for creating their version of Virgin Mary at the priest's request.

It was decided that the images should be made from natural materials found in the region. There were several plants that could have been used, but it is generally believed that this image of the Virgin was made from finely ground corn stalk heart possibly mixed with the glutinous substance from the orchid. The images were painted with vegetable and plant dyes, polished to a high sheen, and then coated with a lacquer to preserve the colors. Supposedly, the original looked as she does today.

From Patzcuaro, the priest probably passed through Guadalajara, certainly Zapopan, and on to Talpa de Allende with the Tarascan Indian Cerda brothers' version of the image.

Several years later, Father Sanmartin sent to Spain for a larger version of Virgin Mary, which replaced the little one.

The new one now occupied the main altar and the little one stood to one side on a smaller altar.

The mines in and near Talpa were nearly exhausted, so the conquerors moved on to a place near San Sebastian del Oeste called Los Reyes. They took the priest, the little image and most of the men folks and their families from Talpa and Mascota.

It is not known how he came to have it, whether he bought it from Father Sanmartin or it was a gift from him, but a miner named Diego Felipe kept the Michoacan version in his home for many years in Los Reyes. He and his family set up an altar for her and prayed daily at her feet. As Diego Felipe aged and began to grow infirm, he decided to visit his younger brother who still lived in Talpa. Among other gifts, he brought the Little Virgin to his brother and asked him to build an altar in his home so that he and his family could worship her daily. As that brother grew older, he called in his eldest son, Francisco Miguel, and asked him to be a devoted guardian of the Virgin. Francisco Miguel didn't believe she would be safe enough in his house, so one evening, without consulting anybody; he slipped into the church and placed her on the altar alongside the larger image and the painting of St. James.

It has always been the custom to celebrate the patrons' days once a year, and in the early years of Talpa's life, the days were July 25th and December 8th.

After the exodus from Talpa to Los Reyes, Talpa fell into the parish of Guachinango. Due to travel conditions, the priest visited a few times a year, but not on a regular basis, so the two fiesta days were combined and celebrated sometime in the fall. However, the humble church was well-kept and constantly filled with fresh flowers. Two little bells summoned the natives each afternoon to pray and study the Christian doctrine. The services were organized by stewards, and the cantor's daughter, Maria Tenanchi, was in charge of cleaning the church, care of the religious articles and changing the floral offerings.

In those days, as today, the custom was for the worshipers to bring fruit and vegetables from their ranches to lay before the Virgin on the altar. Ears of corn, tender tasty squashes, green beans, chilies, cucumbers, and all sort of agricultural products were brought as offerings. These natural products served as a vehicle for a multitude of insects. Time, travel and bugs made holes and cracks in the Virgin. Water from flowers laid at her feet had stained and rotted the figure until it barely had a human shape anymore.

In 1644, the priest came from Guachinango to celebrate the annual fiesta. The church was decorated inside and out with fresh flowers, paper roses, palm fronds and greenery from the forest. The chapel was lighted with grease candles set in clay pots. Beeswax candles were only used for very special occasions. The streets were lighted with rags soaked in pine resin.

While the priest was seated, listening to the choir, he noticed that several of the small images were old and badly disfigured and, according to church laws, should be retired from the public. He stayed on a few days after the fiesta, but before he left, he called in the custodians who were in charge and instructed them to dig a hole in the sacristy of the church, wrap the disfigured images in old altar cloths and bury them. He went on his way to Mascota and other villages before returning to Guachinango.

The hole was dug and September 19, 1644 was set for the burial date; Maria Tenanchi was to be a witness. After she had finished her early morning household chores, taken fresh milk and breakfast to the field workers, she joined a group of her young friends at the church to clean. After she was satisfied with her work, she began to wrap the rotted images in old altar cloths. When she reached out to take the Little Virgin made in Michoacan, it began to light up with such splendor that it seemed as if a bolt of lightening had struck it. This caused such a profound impression on Maria Tenanchi that she fell to the dirt floor in a dead faint.

Her friends, who continued to try to leave the House of God as clean as possible, heard her fall and thought something terrible had happened to her. They ran to help her and asked, "What happened to you? Why did you fall?" She cried out, "Don't you see that broken down, rotten old Virgin is different now? Throwing out light and surrounded by fire! That's what made me fall!" Her surprised companions turned to look at the image on the altar and they saw the same change as Maria Tenanchi. They were also knocked to the floor.




There happened to be another girl about fifteen years old standing at the main door of the church who saw what happened to the other five girls. Terrified, she ran to notify the village authorities. Of course, word of this event went out like a dust storm through the village. In a few hours, the church couldn't hold all the natives who came to see the miracle with their own eyes.

That same night the Talpenses lit the only two beeswax candles found in the village. Runners were sent to try to chase the priest down and bring him back to Talpa. They were also asked to look for beeswax to make candles for the celebration of such a miracle. They could only find six pounds of wax. On September 22nd the two candles lighted on September 19th had not melted down and they had burned day and night.

The legend tells us there are two things to keep in mind:


1) There did exist a small decrepit image of Virgin Mary made in Michoacan from cornstalks, and in a few seconds was transformed into another material, heavy as it is today, and in a restored image.


2) There was no human intervention in this restoration and, if history can be believed, the transformation had to be supernatural, divine or spontaneous combustion mixed with staunch faith.

There is no mention in the legend of the stories we have heard in these parts about her being taken to Mascota and walking back by herself in the middle of the night. There is mention of a terrible plague in this area in 1666 claiming numerous victims every day, especially in Mascota. Folks over there organized a big pilgrimage to Talpa to prostrate at the Virgin's feet and ask for help. The priest told them to go back home and organize a fiesta for her. The day the pilgrims arrived in Talpa, the death toll began to decline, and on the third day there were no reports of burials. The people were so appreciative, the artisans made a votive lamp of silver for her and asked the priest to allow her to remain a few more days there, but he didn't permit it and she was returned to Talpa.

Once when she was taken out to visit the sick in La Resurrection, and returned at midnight, the two old church bells began to chime by themselves. Although broken, the bells are still guarded here. One weighs one kilo, 400 grams. The other weighs six kilos, 600 grams.

October 7th is celebrated in grand style in Talpa de Allende.

From the Series "At Home in Talpa de Allende, Jalisco"
Interpreted by Jenny McGill © Jenny McGill 2007


* * * 

Here are a few of the offerings left for the Virgin on the wall of the church. I found these online. The story behind the offering is found below the picture the person has painted.







It is also not uncommon to see votive offerings such as tin arms, legs, eyes, and other body parts pinned to the wall. These can be hand made or purchased in nearby shops.

  

Similar style votives have been found in pre-Christian sites. The following are clay and have been found in Roman sites:

Clay eye votive

Clay arm and hand votive

Clay uterus votive


When we visited, the wall had been recently cleared and there were only a few offerings, but here is a photo I found online.




Pilgrims walking to Talpa
You can find several nice blogs with photos online about this pilgrimage.
Here is one I like in particular that will give you an idea of a typical day on the trail:

Pilgrimage to Talpa

I would love to return to Puerto Vallarta some spring and walk this pilgrimage!