Why Is A Simple Sweater Cause For Celebration?

A simple sweater is the most recent physical proof of just how much I have healed from MCS over the last few years.
The sweater is 100% acrylic 'wool' and is dyed black.

The reason it is so exciting is because (insert drum roll) I washed it once before being able to wear it.

Once!

With just a bit of my safe-for-me detergent.
Did I mention once? :-)
A few years ago it would have been questionable whether I could detox it at all because it is very thick and dyed black - both of which can be hard to detox.
Furthermore, it was sold in a grocery store and in the past it would have taken many washes just to remove the smells from the store (laundry aisle, air freshener etc) let alone the excess dyes, finishing chemicals etc.

If I had been able to detox it enough to be safe for me in the past, it would have taken at least 16-20 washes, many of which would be using various things that people with MCS use to remove scents, chemicals, dyes etc from clothing.  Things like vinegar, baking soda, TSP, borax, milk and more.

So being able to wash this thick, black, synthetic sweater sold in a grocery store only one time with just a bit of mild detergent and be 100% okay with it - no reactions at all - is a victory to me and a wonderful sign of how much I am healing!

It's very exciting :-)
And also warm and comfy!

MCS Travel Review: The Omega Institute from an MCS Perspective

This post is a departure from my usual style of sharing MCS improvements and victories. 
If you are not considering to visit the Omega Institute and you are using a healing tools such as Shifting Focus, Amygdala Retraining or Dynamic Neural Retraining, I suggest that you either skip this post entirely or read only the 'Pros' list.

In August, I visited the Rhinebeck campus of the Omega Institute for Holistic Studies.
It was a wonderful trip and a true celebration of how much I have healed.


MCS has improved for me to the point that I had few issues on this trip, however, I am still sensitive enough that I was able to take note of the things that would have been issues when I was worse.
So instead of focusing on my own improvements, like I usually do, in this post I will share lists of Pros, Cons, Tips and list of Possible Issues by Building.
I hope that it will be helpful for others with MCS who may be considering attending the Rhinebeck campus of the Omega Institute.



Pros

•  Other than the parking lot, the entire campus and lake are free from motorised vehicles.  For internal staff transport, bicycles or battery powered carts are used.  On big arrival and departure dates, a minivan was used a few times to transport items from the parking lot to accommodation - but only when they were too large to take on the carts.  The small country road that runs through the middle of the campus is extremely low traffic.  I saw about one vehicle an hour at most.
• I was pleasantly surprised at how fragrance-free most of the staff and many of the guests were.  On over 90% of the staff, I didn't smell a single scented product.  Overall, the guests were far less scented than most people I encounter.
• Linens, towels etc as well as staff clothing are cleaned with fragrance-free detergent and no fabric softener.  This was awesome because it meant that none of the staff smelled 'like laundry'.  Due to the brilliant way that wastewater is treated at this location, the laundry products used need to be as free from chemicals as possible.  As of August, 2010, there was no fabric softener used and the detergent was Seventh Generation Free and Clear.  I would check that this is still the case if it is an important factor for you.
• There is only one smoking area on the entire campus.  Other than that, the entire campus, including camping areas and trails, is smoke-free.  I only smelled smoke once, distantly, the whole time I was there.
• There are no fires or camp stoves allowed in the camping areas.  Also not allowed is the burning of mosquito coils, torches or similar.
• The Dining Hall had so many different food options available that many food sensitivities could be accommodated.  Gluten free bread was always available (but not a dedicated GF toaster).
• The food was delicious, plentiful and healthy, with many organic options.  The herbal teas are Numi brand that does not have 'flavour' as an ingredient.  Available sweeteners include stevia, agave, honey and raw sugar.  There are herbal tea, tea, milk, coffee, water and unsweetened juice available at every meal.
• There are many different drinks and snacks available at the cafe.  many of them cater to different food sensitivities with gluten free and sugar free options.
• For those who need meat due to health issues, there are meat options available at the cafe.
• You do not need to make a purchase to sit in the cafe.
• Free internet access in cafe with 3 computers available for guests.

Cons

• The most important issue for many will be that, in early spring, the grounds are treated with pesticides to kill ticks.  I know myself well enough to know that, by August, I would be totally fine with this so I didn't bother asking what was used.  If this is an issue for you, I would suggest doing more research into what pesticides are used, how long it takes them to degrade etc.
• There is not an enforced fragrance-free policy.  Some staff and guests did wear perfume or essential oils.  Other guests will smell of whatever laundry products they normally use.  This could be effected by what workshops are happening that week.
• Some people use bug spray and sunblock.
• Hilliness.  If fatigue or exercise are issues for you, this could be a big challenge.  If you are camping, the 'lake camping' involves less hill climbing to get around than the appropriately named 'hill camping'.
• The bookstore, which is full of wonderful things, smells very strongly of incense, which is sold there.  I didn't ask if they also burn it there but it definitely smelled as though they do.
• Water is chlorinated. Even the drinking water, which is well water, tasted chlorinated to me.
• Flourescent lights are used in various buildings.
• Once a week, the grounds are cut with lawnmowers and weedwackers that have exhaust fumes.  You can ask what day this happens and plan your visit around it if needed.  It's also an option to spend time in one of the safe-for-you buildings or on the trails while it is happening.
• For those with extensive food limitations, protein options are mainly soy, legumes, beans, dairy, nuts or eggs.  You can get meat dishes at the cafe if that is your only tolerated protein source.

Tips

• You can request to be matched with an intake staff who is not scented.  You can also call ahead of time and request that there be a fragrance-free intake person on the day of your arrival and can then ask for them by name.  If they try to tell you that all of their staff are unscented, I can tell you it's not true. 
• You can request that your intake be done outside of the Main Office building (ask for the side further from the parking lot).
• If you encounter someone smoking, burning mosquito coils or torches or using a campstove, you can ask them to stop, informing them that those activities are not allowed.  If this doesn't work or you aren't comfortable doing it, you can let a staff person know it is happening and request that they put an end to it.
• They do have some degree of awareness about chemical sensitivities so if someone in your workshop is wearing something that bothers you, you can likely have it addressed.
•  If you have food sensitivities, don't forget to check the counter along the wall at the top of the room.  It often had special things like plain grains (rice, quinoa, millet, amaranth) ad unseasoned vegetables and legumes as well as fruit.
• To avoid being stuck in line near possibly scented people at meals, you can come early.  The doors never opened early for breakfast but they did for all of the other meals.
• There is a fridge for guests in the staff lunchroom.  You can ask for containers to fill with food from the buffet and then come back later to eat what you set aside.  Or you can bring small amounts of your own safe food.  Labels are with tape and permanent marker (smelly) so you may want to write your own labels ahead of time to avoid having to use the marker.
• You can use the Virtual Tool option on their website to see 3D views of the inside of many of the buildings. (click on the orange triangles)
• If you are on an R&R Retreat, you may like to plan your visits to buildings or the lake to coincide with the times that the main workshops are happening.  That way, there will be far less people there.

Possible Issues by Building (I will put 'unknown' if I didn't test it out)

Main Office/Registration: bathroom has either air freshener or fragrance oil sticks, staff may be scented.
Lake Theater: excellent 
Stillwater Yoga Pavilion: unknown
Omega Center For Sustainable Living: unknown
Bookstore: very bad incense fumes - most things bought there would be permeated with the smell.
Cafe: Wi-fi internet access, fumes from roasting coffee at times, cooking odors.  Once I smelled incense or sage (if it happens, you can ask them to stop). At other times, I found it quite good.  Hardwood floors.
Guest Services (below Cafe):  quite good
Ram Dass Library: mostly carpeted but I can't judge how bad it was because I didn't react to it.  Could not smell 'carpet' smell.  Bathroom awful - had fragrance oil sticks.  I complained so this may have been changed.  Some fumes from bathroom do travel upstairs but there are a few little balconies up there you could take books out onto.
Main Hall: carpet, padded gym mats stacked at sides of room (or spread out depending on workshop).  I was fine with both of these so am not able to judge how bad they would be for others.  I could not smell 'carpet' smell.
Dining Hall: excellent.  hardwood floor, open windows, option to take your food outside to eat either on the deck, at picnic tables or anywhere you want! 
Movement Studio: unknown
Sanctuary: unknown (but from the pictures it is carpeted).
Wellness Center: unknown but I suspect essential oils and possibly incense and/or moxibustion.  Spa and facial chemicals.
Sauna: unknown (you could ask what kind of wood was used, what is used to disinfect)
Children's Center: unknown
Dorms and Cabins: unknown
Tent 'Cabins': unknown (but there definitely could be mold)
Hill Camping: leaf mold, sites on a slant
Lake Camping: few or no places to attach a tarp
Lake: other people's sunblock (but I found much less sunblock smells than a regular beach)
Outdoors in General: mostly excellent but avoid woody areas if you react to leaf mold.

Bathrooms: at times, many of them had a smell that I later found out was fragrance oil sticks even though I didn't see any in evidence.  I didn't test the soap because I think it was scented.
Lake bath house: I think it had fragrance oil sticks in a closet.  Smells from guests' shower products, personal care products, hair products etc.  Glass doors on showers (so this may be a better shower option if you react to the vinyl curtains at the Hill bath house).
Hill bath house: Smells from guests' shower products, personal care products, hair products etc.  Heavy vinyl shower curtains (they were old and I didn't notice VOCs but could be an issue for some).  This bath house may be a better option for you if you react to fragrance in the Lake bath house.  *note* this bath house has many more open windows than the Lake bath house.  I found it much better.

Week-long Trip A Huge Success - MCS so much better!

Glorious view from the scenic Taconic State Parkway  - the photo doesn't do it justice.

I am back from a wonderful week long trip to New York State.
I will write a review of the Rhinebeck campus of the Omega Institute from an MCS perspective soon but if you'd like to read a bit sooner, you can view this post on my art-focused blog: Back From Omega Institute Retreat - Wonderful!

The trip was a huge success for me from an MCS standpoint.  I am so excited to have been able to go on such a big journey and not get sick!  It was totally liberating and joyful to interact with all sorts of people as myself instead of as a) a sick person or b) a person wearing a mask.

After returning home, I realised that I had spent time with people, enjoyed their company and not even thought of mentioning MCS to them!  It was/is SO COOL!

I will also be writing a review of the Bed and Breakfast I stayed at on the way there and back.  They are more MCS aware than most (though they have many areas they could improve).

Since returning I have no desire at all to sit in front of the computer so it may take me a while to get to those reviews.
The air here is whispering of autumn and I want to be outside in it!

Drawing done at Omega after an Energy Medicine healing session

I'm Going On A Trip!

I'm very excited to have healed enough that traveling is now possible!

I am going to the Omega Institute next week (I wrote a bit more about it on my other blog here).

On the way there and back I will be staying for one night at a Bed and Breakfast that is MCS aware.  It has been used by patients of Dr. Sherry Rogers.  I will post a review of both the B&B and the Omega Institute some time after I get back. 

I'm also working on a post that has tips on having an MRI when you have MCS (I had 2 in June).  Writing is slow this summer so I'm not sure when these posts will happen but hopefully soon!

My summer is going well so far.  I am loving spending time in my gardens and morning walks and bicycling.
I am happy to be able to bike in traffic without reacting and ride on city buses!

I hope you are doing things you enjoy this summer! 

:-)

2 Year Update: MCS Still Improving!

It's been just a few months longer than 2 years now that I have been steadily getting better from MCS.

I know that to a newcomer with MCS, the idea of it taking years to get better could seem disappointing... but I'm just fine with it.  I'm so grateful to be healing and am trying to be patient with the rate at which it's happening.  So when I look at how FAR I've come in 2 years... I say YAY!!!

My life has changed so dramatically that I am daunted by even trying to put it into words.
For those who have or have had severe MCS, perhaps this update list will capture it.  A list full of things that I once would have thought to be impossible!

My mask is lonely... it almost never gets used.
When I go out, if I remember to bring it, I use it in bathrooms that have strong air freshener.  If I forget, I use the bathrooms anyway!  And I'm okay.

Going out for dinner is no big deal now from an MCS standpoint, though I still have aftermath due to food sensitivities.

I close my windows if my direct next door neighbour has their dryer or lawnmower going or if neighbourhood woodsmoke is very strong but otherwise they can be open often.

New clothing takes only a few washes with just laundry soap before I can wear it (as opposed to tons of 'detox' washes with special things like vinegar, baking soda, TSP, milk, borax etc etc).

Driving in a 4 year old car that still has new car smell is something I give no thought to - zero reactions.  No mask needed.

Car exhaust, lawnmower fumes, air freshener, BBQ, cigarette smoke, dryer exhaust, essential oils,  perfume/cologne, woodsmoke, paint, new roof smell, road tarring, carpets and much more bother me less and less.  Passing exposure to any of these causes no reaction except distaste.  Prolonged exposure to most of those causes only slight reactions and very fast recovery time.

I can spend time around regular people who are covered head to toe in scented products.  I don't enjoy the smell at all.  I do find it offensive and distracting.  But my physical adverse reactions to it are far less and this has freed me up so much socially.

I can't really express just how different and wonderful it is to do something as simple as smile at a stranger in a store or doctors office!  Those small bits of human interaction are amazing and were totally interfered with my wearing a mask.

I know there are so many little things I am forgetting because the changes and improvements are becoming 'normal' to me.  I'm trying to relax and let myself just enjoy the ride, the journey, instead of feeling the need to catalogue or keep track of all of the improvements.
:-)

May is MCS Awareness Month... check out the Canary Caravan Carnival hosted on Vardo For Two!

In honour of May being MCS Awareness Month, Mokihana from Vardo For Two is hosting a  Canary Caravan Carnival!
She has come up with a number of creative categories and welcomed submissions that include poetry, a visualisation, prose, photography and art.

There is a wonderful diversity of entries listed below in order of appearance.  You can click on the titles to be taken directly to that entry on Vardo For Two.

The Impact of MCS on Self-Esteem
Article by Recovering EI/MCS Psychotherapist Kay McCarty

Finding your Path
A Visualisation by MCS Ally Joan Tucker

Reflections and Feelings About Life With MCS
Poetry by Katrina Kluzik

Susie Collins Writes About Her Passion

Prose by the Founder of The Canary Report

"Sad Songs Not By Elton John"

Poetry by 'Anita Freshair' (aka Daisy O)

Entertaining Angels Unawares

A True Story by MCS Ally and Astrologer cj wright

Cosmic Pie: An Astrological Tool for the Canary Carnival

Article by Mokihana using this tool to gain insight into her journey with MCS

"Portrait Of A Life With Chemical Sensitivities"

Photography by Julie Genser, Founder of Planet Thrive

Artistic Tangents: A Hidden Gift From MCS

Art and article by Liberty

Making An MCS Documentary... A Canary's Angle On The Issue
Article by MCS Filmmaker Kimberly Shaw

Lilacs Smell Good Again!

The lilacs are in bloom in southern Ontario - an event that used to keep me inside at this time of year.  They used to smell very strong to me and I would get bad headaches and brain fog if I was exposed for more than a few seconds.  With MCS, one can react to VOCs from any source - even naturally occurring ones in plants and flowers.


Now lilacs smell wonderful to me!  I was out gardening for a few hours today and the wind was blowing a neighbour's lilac blossom scent my way.  I loved every minute of it and had no negative reactions  :-)
It is such a joy for me to be able to enjoy these natural smells again.
I've also been enjoying it when fresh cut grass smell wafts my way - something that a few years ago I would have thought impossible due to the high terpene level in grass.

I'm not yet at the point where I'd bring strong flowers like lilacs, hyacinths or lily-of-the-valley inside though I do bring some more mildly scented flowers in.

What flowers do you love?

Do you react to natural sources of VOCs?

oops! Apologies to Subscribers for Feed mixups

Oops!
I was doing some adjusting to my blog feed yesterday and an unexpected result was that it sent out a list of old posts.

I'm sorry about that!

I'm not sure what I did but will hopefully have it fixed soon.
:-)

Inspiring People With MCS - Amy Ludwigson

The website of Amy Ludwigson, Pure Habitat, is the home of her insightful blog filled with posts to get your introspective juices flowing.  I frequently find it joyful and enlightening and, perhaps even more valuable, it inspires me to get to know myself better, to go within and question myself.

A quote from her About page:

"I have laughed, I have danced, I have cried, but most importantly on this journey I have learned about Love.  Not the gushy, you are just sooo cute I wanna kiss you type of love, but the life changing, no strings attached love that breaks all boundaries."

Amy has had MCS for over a decade and has a wonderful dream that I'm sure all people with MCS/EI can appreciate!


Until the time comes for that dream to manifest, Amy is working on creating, "...an online marketplace that sells everything that you need to live consciously - aware of the interdependence of our world.  A place that revolutionizes the way that we shop.  Where we understand value meaning something sooo much deeper then price."

Amy's voice is a strong, empowered and eloquent one and is a gift to the community.
She recently wrote a wonderful piece entitled Why My Life Is better Because Of Multiple Chemical Sensitivity which was featured on The Canary Report and quickly elicited over 30 heartfelt comments!

If you like to be inspired, click here to sign up to her blog feed.

MCS and Chlorine in Paper Products - Healthier Choices

As you may know, chlorine is a chemical that most people with MCS react to.
Aside from being in treated water and laundry bleach, chlorine is also used to whiten paper products of all kinds - from writing and art paper to facial tissues aka kleenex, toilet paper, paper towel and feminine care products like tampons and pads.

Although I am now fine with it, when I was much worse than now MCS-wise, I couldn't even touch chlorine-whitened paper products without reacting.  Every paper product I used had to be chlorine-free.  Before I found chlorine-free paper, I was using chlorine-free paper towels to write on!

There are two kinds of 'chlorine-free'.  One is called Total Chlorine Free (TCF) and refers to products that have never come into contact with chlorine.  The second is called Processed Chlorine Free (PCF) and refers to products that may include recycled fibres that originally had contact with chlorine, but in the present product no chlorine was used.
Although some severe MCS people can only use TCF products, I have been okay with PCF products (which is what you will mostly find available).

Chlorine-free products that are whitened use 'oxygen bleach' to whiten - essentially a very strong potency of hydrogen peroxide.

PCF products are becoming more available as the market for 'eco' or 'green' products grows.  You can now get PCF toilet paper and paper towels at many regular stores and a few even have PCF facial tissues.  One often has to read the fine print on products to find the words "whitened without the use of chlorine" or "whitened with hydrogen peroxide/oxygen bleach".

For Writing, Drawing and Printers

Over at my creativity blog, I've written a review of Ecojot, a company that makes PCF, 100% recycled journals, sketchbooks, scrapbooks and more.  I love their products and was amazed and overjoyed to be able to use them right away after purchase!  I chose books that were sandwiched between others so that they would not have gotten scents from the store on them.  The glues and dyes used in them are vegetable based and I have never reacted to them.

I have also been okay with products by the company Pistachio though they have needed some airing out before use.  They have lined, 3-ring binder type paper that I use as well as spiral-bound notebooks.  Their dyes are also vegetable based.

Cascades makes PCF paper that works very well in printers and copiers and is super affordable at under $10 for 500 sheets (I use it as writing paper too).  They also carry things like toilet paper, paper towel and facial tissue.
 As far as I know, toilet paper that is marked as "Septic Safe" is chlorine free.


For People With Periods
If you choose only one product that is chlorine free, I urge you to choose chlorine free period products, especially if you use tampons.
The brand Natracare carries period products that are not only TCF but also made from certified organic cotton - another very important choice for those with MCS considering that cotton is one of the most heavily pesticided crops in the world.
I have had no reactions to their pads or tampons.

DIs there a chlorine-free product you like?
If so, please share in the comments area!  I love learning about new resources.
Thanks :-)

MCS Improvements Part 10: 3 Days of Outings

I find that my improvements are becoming something I'm used to and I want to make sure I keep posting them to keep track of the kinds of things I can do now and be okay.
During these exposures I sometimes feel tired or spaced out but am still functional.
*note* I get hormonal migraines and so there's about one week in the month when I try not to do 3 days in a row like this or it's more likely I will get a migraine.


Friday

• spent 4 hours waiting in a free tax clinic at the local community centre
• walked to and from the centre (I'm slowly building up my exercise tolerance)

Saturday

• went for walk in some woods in town
• went for non-organic dinner at Mexican restaurant
• went shopping at large chain grocery store for about an hour and a half

Sunday

• took city bus... BUS! (actually 2 buses) to small book sale at a cafe. Coffee fumes used to knock me flat in minutes. This is a photo I actually took on the bus (on a different day). You can see I'm sitting near people.
  
• browsed books, used bathroom twice (reed fragrance oil diffuser)
• ordered delicious creamed vegetable and curry soup, sat for an hour drawing
• went next door to a used book store, browsed for 30 minutes
• got ride to Giant Tiger (kind of like a cross between a teensy Walmart and a dollar store - very stinky) shopped for about 45 minutes

All of this was with no mask except for a few minutes at the bus stop when I held it to my face while someone smoked a cigarette.

The really neat thing about this is that it was 3 days in a row - I used to have very long recovery times but now they are generally very fast and I can go out the next day again.

MCS Improvements Part 9: MCS and Magazines - not usually a good mix but...

The title says it all!
For most of my journey with MCS, I couldn't even be in the same room as a magazine, flyer or newspaper without negative reactions.
To my delight, I've noticed that those reactions are getting less and less lately.
I can read through most newsprint flyers or newspapers in small doses with no reactions although I dislike the smell.
I can also look through glossy magazines for longer periods of time - longer than newsprint and much longer than was possible even 6 months ago!

This is particularly exciting to me because I love making collages which magazines, seed catalogues etc are great for.

Here's a happy-that-it's-spring collage I did recently:

MCS Healing Tools: Shifting Focus

One of the most valuable tools on my healing journey from chronic illness has been a willingness to shift my attitude and focus.

The process that has worked best for me goes something like this:

1. Find things that bring me joy to do or think about (gardening, art, cats, nature)
2. Do them as often as I can
3. When I can't do them, think of doing them - imagine and envision it as richly as I can

and also, very importantly:

1. Note what does not bring me joy (thinking about MCS stuff, limitations)
2. Refrain from doing or thinking about it whenever possible
3. When I notice myself thinking about something that doesn't bring me joy, STOP
4. ... and consciously choose to think about (or better yet do) one of the things that does bring me joy

This may seem extremely simplistic or sound like those irritating people who tell us to 'think positive' but it has done wonders for me on my healing journey.

There is a real mind/body connection - and not in a 'new-agey' sense.
When we do things that feed our joy, a whole bunch of positive things happen physiologically in our bodies - making them much more able to heal or deal with stressors, exposures etc.
When we feed our pain, a whole bunch of negative things happen in the body - encouraging illness.
I have read that when we simply think of doing something, similar things happen in the brain and body.  So if we cannot actually DO the things that bring us joy, merely thinking of doing them can have wonderful physical effects - not to mention the great effect on our mood!

A critical part of Shifting Focus is avoiding thoughts that have what I call 'negative hooks'.
I have written more about this, including some more detailed instructions, in this post: Technique to Tap the Healing Power of Love

I'd love to hear what brings you joy to do or think of!
Please feel free to share in the comments area.

☺

MCS Improvements Part 8: Walmart, mall, dollar store, library, Chapters, restaurant

I finally polished off this post and I'd like to share something very inspiring.
I recently went on a number of outings over 2 consecutive days that went SO well it was wonderful!

I was on a quest for unscented glue sticks (surprisingly hard to find) and got dropped off at Walmart (I don't drive).  This is the 3rd time in a few months that I've done Walmart without a mask. I had to bold that because that's a statement I thought I'd never see!

1. The first time was a few months ago for about 45 minutes and although not terrible, was not good - really bad brain fog, then emotional breakdown later with unexplained sobbing and fatigue.
2. The second time was a few months later - 15-20 minutes - and I had slight brain fog but was otherwise fine.
3. The third time was last week and it went great.  I was in there for at least 45 minutes, in all different departments, sniffing glue sticks of all things, and the only symptom was mild brain fog and feeling a bit overwhelmed.  No fatigue or neuro reactions later.

Not only that but after Walmart, I walked through the mall and went to Dollarama (I big, chain dollar store - lots of VOCs).  I was in there for about 30 minutes and was fine!  A dollar store is another place I thought I'd never be able to go without a mask.

After that, I walked through the mall and went to the library for a while and then walked 20 minutes home.  By that time I was very tired because I'd been on my feet for over 2 hours and I am not in good shape due to little exercise.
But other than normal tiredness, I was totally fine MCS-reaction-wise.

I woke up the next day feeling fine - no chemical hangover - and ended up going out again!

 funky tree from walk!

I went for a nature walk, browsed in Chapters for at least an hour (large chain bookstore that carries scented candles and has a Starbucks in it - fumes) and had dinner at Swiss Chalet.  The restaurant was so busy that I ended up being there for about 2 hours in total what with waiting in line, waiting to order, waiting for food to come and eating.  I got a mild headache which left as soon as I ate - likely blood sugar-related.


So that's 2 days in a row of huge, hours-long, unmasked outings with few ill effects.
And I was fine the next day and the day after that etc.

Awesome :-)

Manifesting A Happy Home

There's a really wonderful post by a Leslie (who has MCS) on her blog about how she drew a picture of her dream sustainable, safe-for-her house... and less than 6 months later found a home that is so close to her picture that it's almost eerie (but very cool)!
A very inspiring read!  You can see it here: Creating A Sustainable Dream Part 3.

It got me thinking about how much I yearn to live in the country, surrounded by nature, in a funky, MCS-safe house.  But I haven't done much to work towards manifesting it.
I want to make a list like Leslie did.
I've been taking part in a neat 'creative every day' challenge via my blog Divinity Withinity and the theme for February is 'Home'.  So without intending it as a manifestation exercise, I have already drawn a picture of my happy home and I wanted to share it with you here just because it's so light-hearted and fun:

(all drawn and coloured with art supplies intolerable to me a year ago)

MCS Improvements Part 7: Tolerating Markers, Pens and Papers

It's very exciting to now be able to use pretty much any pen or non-permanent marker!

I can now use sparkly pens, metallic pens, ball point pens, gel pens etc etc.
Ball point pens in particular I never thought I would be able to use again and am now totally fine with.

I'm loving all the new colours that are opening up to me.
Being able to do more artistic things is increasing my energy and improving  my mood... and it's SO healing for me!

I'm also now fine with regular paper, watercolour paper, construction paper and various coloured and craft papers!  Yay!!

 

You can view more creativity-focused posts on my blog Divinity Withinity.

Feeding The Sacred Spark

I've been thinking, for a while now, of how much I'd like to have more positive focuses in my life so I've decided to take the plunge and participate in this neat creativity challenge.
I love the art of the woman who runs CED and have been following her blog for many months, feeling inspired each time I read.  Her name is Leah Piken Kolidas and she provides monthly themes to help creative juices flow.
It's a very laid back 'challenge' and basically any participant can take part in whatever way feels right to them.

I love it!

I know how much healthier and happier I feel when I am creative and I think being part of this will motivate me to do it more often.

I've started a new blog called Divinity Withinity to be my new 'home' where I share creativity and celebrate things I enjoy - unrelated to illness.
A place to have fun, be silly, and connect with the sacred spark inside of myself - the spark that flares into a flame when in 2 situations - when I am in nature and when I am being creative.

I believe it can be healthy to break free from identifying too deeply with a label or diagnosis and this step feels like a positive one on my healing path.

So if you're a person who enjoys sharing of creativity or artsiness, please feel free to check out the new blog!  (I will still post MCS improvements in this blog.)

What are some non-MCS related positive things that are in focus in your life?
I'd love it if you shared in the comments area. 
☺

please note: the new blog will have photos so for dial up users, it may be slow to load.  I've tried to keep this MCS blog low on photos and videos for that very reason but I really want to celebrate on the creativity blog by sharing photos.  I apologise for any inconvenience it may cause.

MCS Improvements Part 6: Tracking Over 3 Months (3 dentist appts)

I had a neat opportunity to track improvements recently.

In 3 months, I went to the dentist 3 times - with each visit almost exactly one month apart.

The dentist is a number of hours away and each trip in total took over 8 hours at the shortest.

on the last 2 visits, I also went out for lunch at the same restaurant after the dentist.


I found it much easier to assess the level and rate of improvement with those visits compared to somewhere I go once or twice a week around town.

Exposures:

same hours long drive there

in same newer, smelly vehicle

inhaling the same exhaust fumes

walking through the same parking garage,

air freshenered elevator,

cleaning producted bathroom,

chemical-filled dentist office,

scented serving person, carpeted restaurant

eating the same delicious but non-organic food

same hours long drive home

in same newer, smelly vehicle

inhaling the same exhaust fumes

Reactions:

with each trip my reactions were WAY less than the one before, my recovery time was faster (with trip 3 recovery time being none at all really because I pretty much didn't react all day!)

I should put that in it's own sentence.

I am improving fast enough that although Trip 1 felt like hell and Trip 2 still felt like an ordeal (though not a hellish one), Trip 3 produced pretty much NO negative reactions and therefore didn't require any recovery time.

 I was slightly tired a bit after eating which happens to me anyway when I digest a large meal.  I still disliked the various things I smelled but did not physically or cognitively react to them.

I also hade slightly sore shoulders which came up about 2 hours after getting home.

After finally washing perfume and etc fumes out of my hair that went away.

If someone had told me 3 years ago that this would ever be possible for me, I would not have believed them.

In Other Improvement News:

In other news, going out to stores, malls, etc with no mask is now the norm for me.  I carry a mask in case I need to use a washroom that is ridiculously air freshenered but rarely use it.
The reactions from those 'out in public' places are lessening steadily and recovery time is almost instant after getting home.
It used to be that recovery time couldn't even start until I had showered and changed into clean clothing but now it begins the second I am in cleaner air.

Interview: Julie Laffin - Performance Artist with MCS

I am very happy to bring you this interview with Julie Laffin, an extraordinary performance artist (who also happens to have MCS).  I first heard of Julie's work on the old Planet Thrive site a number of years ago and was captivated.  I think you will enjoy viewing photos of various pieces on her website at www.JulieLaffin.com

My questions are in blue and Julie's answers are in dark red.


Thank you Julie for participating in this interview.  How did you first become involved in performance art?

I was very interested in various artistic mediums and could not seem to settle into one of them exclusively.  Having a strong interest in both performing and visual arts, I began to merge film, theater, sculpture and photography while in college.  Instead of using actors or models in my work, I often used myself as a subject.  When I read a book about 1970s feminist performance art called the "Amazing Decade" a light bulb went off in my head.  At that moment I began defining myself as a performance artist. That was in 1984.

What are some of your favourite things about performance art?

The contact with a live audience and the fact that the work is born in front of the viewer has been a driving force in my artmaking.  The associated inherent risks in that dynamic has always been both terrifying and rewarding.  Because performance art is a flexible ever-expanding form it lends itself well to innovation and is very much open to be redefined at any moment.  It could be argued that performance art can be traced back to prehistoric cultures in the form of tribal ritual, music and dance but I think the modern incarnation of it still feels new and is in fact rapidly evolving as new technologies enter the picture.  I see our ancestors blowing paint through reeds onto the walls of the caves at Lascaux as representing a lineage that still exists today and is somehow connected to technologically sophisticated image projections.  I find that very exciting.

Have you found your art healing or balancing in any ways?

Yes, being immersed in projects allows me to have psychological space and to let go of being excessively focused on my illness.  My work gives my life direction and meaning.  It gives me the joy and satisfaction that comes with doing my authentic life's work.

Is there anything that you learned in your artistic career that has translated into a useful skill for dealing with life with a chronic health condition?

Because making art demands a lot of focus and solitude, I realized when I got sick that I already have a high tolerance for isolation that I don't think most people have.  It has helped me with the extreme isolation that comes with being severely environmentally ill.  Not to confuse matters but I was a very social person and had many social relationships with friends and colleagues.  However, when push came to shove I was able to embrace solitude when I was forced to.



Do you have any suggestions or words of encouragement for other artists who have MCS?

It's extremely important to only work in ways that do not further jeopardize health.  That said, an important thing for me has been to allow other people to help me and to be willing to reinvent myself.  My early work was extremely materials intensive and always involved a live audience.  I worked with huge amounts of fabrics, dyes, and at times metals and paints but these are no longer options for me and I would not want to subject others to working with them either at this point.  Since childhood, I was a very passionate sewist which has been the hardest thing to give up.  In addition to making gigantic gowns for performances, I made some of my own clothing.  Aside from being too traumatized to make any art for a few years when I first got sick, giving up sewing garments, ordinary or extraordinary, has been my biggest creative loss.  But I force myself to focus on what I can do and right now I can use video, photography and virtual media and at this moment it feels like more of an opening, an invitation to try new things rather than a limitation.

Has having MCS brought any gifts or expansions to you artistically?

Yes.  Before I became ill my performances were mostly solo.  Now they are almost exclusively collaborative.  I am extremely grateful to have amazing people to work with, particularly Clover Morell, Stephen Bottoms and Claire Geall Sutton who have all found ways to accommodate my illness in order to preserve and expand our artistic and personal relationships.  Because of them I have been able to produce performance work.  Also, when I was in Snowflake last year I had MCS friends there helping me make photos: Julie Genser, Melinda and Marsha Honn.  I created a small body of photographic work with a performative base that would not have been possible without their assistance.  Not being able to do live work in front of an audience has forced me to reconsider technology and my recent performances have been accomplished through the use of live feed video.  This is a conceptual shift for me that seems significant and full of potential for future work.  I'm taking a performance workshop in Chicago right now via skype because, gratefully, the other participants are willing to make it work.

Also, Clover Morell and I have rehearsal/studio time when we collaborate via skype with the intention of developing future work.  I was recently skyped into an art theory class at the School of the Art Institute to talk about performance art and how I am using new technologies in a simple way to give myself presence.  Another artist gave the talk and I was there to be part of the dialogue and provide an actual example of someone producing work using this strategy.  I feel very grateful that my EMF sensitivity is not severe enough to limit my ability to use computer technology.  I know others do not have this option and my heart goes out to them. The internet and video conferencing have in some ways given me my life back.

Is there any particular performance that you dream of doing one day?

Yes, but I'm keeping it a secret.  It's been a dream since I conceived the piece in 1994 and I'm fearful of talking it out of existence.  It's probably superstitious on my part but it's happened before.  I will let you know if and when it happens, but I will say, it is very low tech and involves nature and no technology.

Do you have any stories to share of people being unexpectedly supportive or kind to you (as a person or as an artist) since you acquired MCS?

Yes, it has happened many times.
One poignant example for me was when my friend Steve Bottoms visited me in Snowflake.  He lives in Leeds (England) but came to Chicago to do a lecture and made a special trip to Arizona to see me in July of 2008.  Even though he had gone through an elaborate accommodation ritual with personal care products before he arrived I was still not able to tolerate the residual fragrance on his hair and skin.  Over the course of our three day visit in rural Arizona, he took many steps on my behalf: leaving his car a half a block from my little rental house, removing his usual shoes and clothes and donning a towel, sealing up his wallet and keys in plastic bag, wearing his contact lenses instead of plastic framed glasses, taking several baths including bathing in baking soda, wearing my husband's clothes, and eventually shaving his beard and head because after all these steps I was still reacting to a trace of fragrance in his hair.
Being artists, we captured most of this process on video and are making a performance about it.

Also, because of the willingness of Clover Morell and Claire Geall Sutton and staff to accomodate my illness, I have been able to continue my curatorial role in Site Unseen, an annual art exhibition at the Chicago Cultural Center.  This has been my lifeline and their kindnesses are too numerous to itemize.  Also, my husband has changed his whole life to help me.



Those are wonderful stories Julie!  Thank you. I look forward to the performance you and Steve are making about that experience!


Is there anything else you would like to share?

I still plan on getting well and am excited about how regaining my health will inform my work when it happens.  It gives me hope and a future to look forward to.




Thank you so much Julie for agreeing to be interviewed!  I really appreciate what you have shared and am very inspired by the way you have adapted your approach to allow you to continue your passion after the onset of Environmental Illness/MCS.

If you'd like to read more, there is an excellent, in-depth article done in 2003 here and you can visit Julie's website to view photos of various performances.  :-)