My Rambling thoughts....

I had another visit with the toxicologist and we spoke again of some of his ideas about MCS that I find interesting.  He said that there is a definite profile he is seeing and interestingly my Mold/MCS doctor talked to me about this as well.  This is something that I too have been observing for a while.    
He again talked about the overwhelming amount of people coming to him with MCS.......and he said that he hears the exact same story time and time again. Only after a long toxic exposure/illness...........undiagnosed or misdiagnosed.........AFTER the cause is found and eliminated.....MCS then develops.  But not for all.....many recover, while some go on to develop MCS.  And this is where he is seeing a profile emerge.

Of course not everyone fits this profile but he said that most do...........in fact WAY too many to not be noted.

Highly intelligent, over achievers with very active minds...........many who were participating in extreme sports prior to getting sick.  A colleague of his thinks that there may be a connection  between *Over Training Syndrome* and the development of MCS.  He said it definitely takes a toxic exposure, but most recover quickly afterwards.  Why do some of us develop MCS ??   

Now my Mold/MCS doctor had a slightly different take on it.  She summed it up as.....Most who develop MCS are people who were previously.....and I quote.... "leading EXTREMELY productive lives"  not necessarily in athletics though.  She said that she believes that there is something about us.......with our active minds that can turn on completely......not everyone can do that, turn on completely and stay that way.......that may have something to do with this.   

I shared with both doctors what the other had said............and both nodded and agreed.  

A friend of mine who also believes there is a common denominator put a different spin on it......my Mom used to call me an adrenaline junkie, because of the climbing and I've also been called a endorphin junkie..........but that's not really it.  That's not what it's about.  My friend used the term *over stimulated*.  That resonated with me.  I would definitely consider myself an *Over Stimulation Junkie* for sure!!  Never any down time for me and even when I finally sat down at the end of the day to relax, I'd be either reading, crocheting, working a puzzle or doing SOMETHING productive right up to my last waking moment...with never a wasted waking minute.  

And what would being in that constant state of hyper awareness or high vigilance....which you would surely have to be in to sustain that credo............what kind of toll would that take on our nervous system in the long run?  Would constantly over stimulating our system at an intense level actually damage or change our Nervous system?  Most people with MCS will describe their nervous system as being "fried".

Prior to me getting sick I was an avid rock climber, hiker, long distance runner and had completed 3 marathons.  I was playing the drums in a band.  I was the songwriter.  I was a total exercise junkie and was doing some pretty extreme mountain bike rides.  I was working full time and going to night school, juggling being a wife and mother while always maintaining a super clean organized home.  The personal finances were run like a business....keeping records on quickbooks and running monthly financial statements so better decisions could be made with spending.  I was a volunteer grocery shopper for an elderly folks who couldn't drive.  Plus I had many hobbies.....crocheting, crafts etc...an avid reader, yoga practitioner with no down time what so ever.  I never took rest days and I thought it was really cool that I didn't need to.  It was almost a game I played with myself to see how much I could put on my plate......and I would then, add more.  It wasn't about being hyperactive, I think I come across pretty low key and mellow.....it was about stimulating ALL systems on a regular basis.  I was trying to be super human.....squeezing the most out of every single day...mental, physical, spiritual and always pursuing new creative endeavors.  And then add to all that, daily dog walks, meditation and some social interaction....with anyone who could keep up and you have a glimpse at my typical day.  I carried my journal with me everywhere in case I got inspired to write.  I was always running late, not for laziness or sluggishness sake but for the need to squeeze in one more thing.  At work I would operate at the highest level of productivity that I could achieve and even my lunch brake would be spent running errands and such...shopping, banking, perusing the library for new reading material, getting an oil change...staying on top of everything.....and  trying to be a total time tactician.   I've always been like this.   This was my addiction.   

Did all this somehow overtax my system?  

And what does this all this mean?  I don't really know but it can't be a coincidence that so many of us seem to share this personality trait....prior to getting sick.  

If there is any merit to this theory.......that the majority with MCS falls into a certain personality group, that does NOT suggest that this is not real....or that it's psychological or in our heads.  No one denies that certain lifestyles can put one at risk for heart disease or hypertension.   Could this lifestyle have put me at risk for MCS ??

Perhaps some people are born with a propensity to develop MCS.  But what if running in high gear and over stimulating our system for prolonged periods of time takes a toll. 

Chronic stimulation, what would that do?  What if that creates a wear and tear on our system that is not normal and then when something bad comes along like mold or pesticide exposure we're unable to recover?   

Just thinkin.................

So I came up with a theory......in the early am hours.


I'm not sure if this has been considered.  I googled and came up with nothing..so here goes….

Actually the toxicologist at Kaiser pointed my brain in this direction.....but it just sunk in today.......in the early am.  It seems that most doctors don’t deny that MCS is real…..but do debate the cause.

He told me that there are 2 theories regarding the cause of Multiple Chemical Sensitivity.

A) that it is a physical reaction to trace amounts of toxins, based on the theory that the body (liver) is on toxic overload due to extreme exposure.  The system is clogged and now the body is unable to filter out said toxins. (makes sense except for the fact that many don't seem to get better with detoxification).

I'm paraphrasing here.......

or

B) that it is a conditioned EMOTIONAL response to odors rooted from the fear of being subjected to dangerous toxins. (I don't buy this at all)

He then went on to explain that as a doctor/scientist he subscribes to theory B but ONLY because theory A has yet to be proven.  However, he told me that personally he thinks that the reality falls somewhere in the middle.  I actually agree with him, probably why he wrote me the outside referral to a mcs doctor....... anyway not the point.....He further offered that he'd love to see hypnosis experimented on with this disorder.  Interesting.

Well with that said......

What if it is a PHYSICAL conditioned response.....not EMOTIONAL, but PHYSICAL.  What if he is halfway right......Sort of a automatic response.  An automatic trained response.... causing physical symptoms.....not from fear but from HABIT.  The body is in the HABIT of reacting to toxin exposure and CAN’T stop...reacting.  This mechanism has been on overdrive for so long that it can’t be shut off.

Hmmm......

A few things about this MCS that don't make sense to me:

• So many develop MCS AFTER they are NO longer exposed to whatever toxin damaged them.  I didn't.  I had No issue with chemicals until I LEFT my moldy home..... and I've heard that time and time again by others affected.  Think about that!!
• If the condition is caused by from toxic overload.....why do so many folks not get better with detoxification.....in fact many see their condition escalate as time goes on.  Logically if we detox we should get better.....not worse !!

Stay with me....

So.....

Here's what I'm thinking:

Of course we have to detox and I understand that it will take time but what if there is another factor contributing to this condition.  

My body has been fighting poison (mold) for X amount of time.......so when I finally get out of the moldy house.....it is still in fight mode.....My body is still in fight mode and doesn‘t know how to stop.  This is ALL my body knows how to do anymore.  So it LOOKS for something to react to.  It's like the dog that has been hit too many times.  If anyone raises their arm he'll duck........think of Pavlov's dogs.

I'm not suggesting that this is an emotional response out of fear….although fear naturally can add to this condition………but a PHYSICAL response by the immune system.......autoimmune system perhaps??  To protect the body.  Like an old habit that it can't let go of so it thinks that EVERYTHING is dangerous and we have the same response to chemical fumes etc. as if it is Mold.....or whatever poison hurt us originally.

Logically if we detox......we should get BETTER.

I don't know....just thinking.

so could hypnosis help?

Retrain the brain.

The Body Knows

The day before yesterday I was eating my breakfast....organic Oatmeal with 2 pieces of Ezeakeal toast........same thing I eat every day.  Within minutes I felt like I had been exposed to MOLD!!!  I have a very specific feeling when I'm near it .....a feeling I have no words for.  It quickly turned into an atypical migraine and I really haven't had those since I left my house.  Those weird *atypical migraines*  are a mold thing, not really a MCS thing.  MCS headaches are different.

So anyway, all day I had that weird migraine and it was very disturbing because I KNOW there is not mold in this house.  I would have known right away.  I was thinking that maybe this could be the *die off* effect that I've heard about.  As the body begins to detox the mold spores, you can actually reexperience the symptoms and they can be severe.  This is something my doctor warned me about and since I've been doing everything right, I was thinking that perhaps that was what was going on.  If the mold spores have actually colonized in your body, it can take years to detox and can be a painful process. 

Then later that evening I wanted a snack so I made 2 pieces of toast and when I was almost finished, I looked down and the last small piece was covered in green spots!!!!   OH MAN!!!  I ate 4 pieces of moldy toast!!!  

This is Real!! 

From the December Journals

Wed Dec 8, 2010

We have fled again, Maxine and I. The gypsy life.

It was quite a risk, leaving a “safe” place to drive 160 miles to possibly subject myself to another toxic assault on my poor overtaxed system, but it is clearly time to move on.

Maxine is doing much better with the car sickness……she didn’t puke until Landers. I am proud.

The drive was peaceful as I look at the big picture. For some reason life has decided to put me in this place, this Oh so strange place, and as the miles pass by I take in the blue sky and consider the reasons….hmm. I have no answer.

I must phone Louis as I enter 29 Palms so he can guide me in. The last forty five minutes of the drive was spent praying to a God I barely believe in to make this room “safe” for me. One more safe night, please. As Louis guides me in from the main highway….turn left, turn right….. I assess the neighborhood. Poor….not so good. I don’t care. The only consideration is safe air. Will I be able to breathe and not become symptomatic in this room. I really don’t want to sleep in my car.

We land. The Sunnyvale Garden Suites Hotel. Funky, rustic and……kind of in a crappy neighborhood. Louis is there to great me with a big smile. “I see you,…you’re in the white car” he waves me in. “Park right here“.

I immediately recognize the man as a “gentle giant”. He is happy to inform me that his boss gave him permission to upgrade me to a 1 bedroom for the same price as a studio……since I could possibly turn into a long term tenant. They are trying to accommodate me and I am touched. I hope this works. I need a home.

Of course the photos were taken a while ago and it always amazes me the effects of lightning and angle, as I look around, but ascetics are not what I am here for. Perhaps later at some other point in my life I will consider ascetics, but for now that is a luxury un affordable in my new life. I need safe.

Each room has a name…….Cactus…..The Prospector……Split Rock……Tumbleweed………..the gold miner theme.

Louis leads me down a windy brick path with desert/zeroscape on both sides carefully designed by someone artistic who really cares. They have tried to create an atmosphere and the effort is not lost on me. There is a waterfall made out of a wheel barrel and oddball bicycle parts. Somehow it works.

We enter the room and I start sniffing. No offensive odors. That’s good!! This is a one bedroom so when you enter you find yourself in a tiny living room with a kitchenette. To access the bedroom you must walk down a somewhat creepy, unusually long hallway to find yourself in a tiny dark bedroom. No like.....but I’m so busy sniffing that I don’t fully appreciate that fact that I’m getting a 1 bedroom for the price of a studio and Louis is so happy about this fact and believes I should be thrilled. He is a good soul and I know this immediately.

Ok, no smells to mention. Good. Then suddenly the worst thing happens…..I look up and see two different water stains on the ceiling. My heart drops to my stomach. Mold?

“Can I see the studio?” I ask.

Louis opens the door and now I’m sniffing and looking up, down and ALL around. I must look strange. No odor. No water stains. I walk through the room and scan like a dog. Sniff and look….sniff and look, my head bobbing up and down. I check the bathroom. Louis is trying to show me how the heater works but I’m not paying attention.

“I like this room better”

“Ok” he says.

This room is called simply #6, but does not lack any of the charm that the other rooms with *cool* names have so I don‘t feel cheated. With it’s own little path stairway, complete with railroad ties, you get the “crunch crunch” as you walk up to the front door. I feel like I’m in Josh.

It is as clean, as rustic can be. They have tried hard and a lot of effort has gone into this place. Respect.

I unload the car, sniff, sniff. Take Maxine out for a walk….sniff sniff…… I love the weather, I love the air. It is dry. I can heal here?

People on the street say “hello”.

I have my own front porch so I can sit outside if need be. I can open the door AND a window next to my bed for fresh air. This is good.

I drive to the local market…….Pinot Grigio. Before I leave I look around for a corkscrew……ah……they know what they are doing!!

There is a heavy military presence in town and again my pride in my son Jon swells my heart. He was stationed here a few years ago.

Next stop…Subway, always better if it sits awhile. I order the Italian cold cuts.

“Can you add roast beef?” The young man making my sandwich informs me that it will cost extra… a dollar. “Go for it” I say. I‘m craving meat like never before. Next thing I know, I’m joking with him….”add ham too”..…“It’ll be another dollar“……“Go for it, and turkey too“ ……”another dollar’…..”Go for it.”
I have smiled! Interesting.

Back at the Sunnyvale Garden Suites Hotel it is time for a glass of wine. I was kind of hoping that Maxine would have chilled a glass for me but she has issues of her own I guess. She is busy doing her own sniffing and clearly doesn’t care about my libations.

It can not go unnoted that she matches the bedspread beautifully. I think she knows it, by they way she is sprawled out. Is she actually getting use to this crazy new life? Have I somehow awakened the inner gypsy in my dog? We have moved 13 times in less than two months in search of a "safe" place to accommodate my new hypersensitivities.

I sit on the bed. Maxine and I wrestle, cuddle and play. I kiss her belly and survey my surrounding.

I can find inspiration here.

My visit to Toxocolgist

Last week I finally got to see the top toxicologist at Kaiser Dr. Washington.  I’ve been waiting three months for this appointment.  We spoke on the phone a while back and he offered to see me, but was pretty clear that there really is no treatment for mold sickness.  I kept the appointment anyway in the hopes that he would write me an outside referral to go see a Mold/MCS doctor.  How Kaiser works is this….if they are unable to provide needed treatment they will write a referral and then your treatment will be covered, less your co pay of course.  Since Kaiser doesn‘t have an MCS doctor (yet) I wanted to give it my best shot.

I drove down to L.A. with my expectations pretty low because I didn’t know if he would even believe in MCS.  Well he does and was actually very knowledgeable.  I told him my story, he reviewed my mold testing reports (on the house) and commented that 200,000 spores is a “big number“.  He said that he had no doubt that all my symptoms were from the exposure……….all very classic mold.  Ugh….EVERYONE should know this since some of us are genetically predisposed to become very ill from mold exposure and it is estimated that as many as 25% of homes have a toxic mold problem!!!. If I’d only known that my bazaar set of symptoms…..well anyway…

Regarding the MCS; he explained that there are 2 different schools of thought: A) that it is a severe physical reaction to trace amounts of toxin based on the theory that the body has exceeded it’s ability to rid itself (of toxins) due to excessive exposure…..and/or theory B) it is a conditioned response developing with ptsd that can FEEL very real.  He then explained that he is a subscriber of theory B…..BUT if/when they prove theory A he will change his mind.

He then said that it most likely falls somewhere in the middle. Whatever the cause…..it sounds like he sees a lot of MCS cases so he wrote me the referral and wished me the best.  This is huge for me.  I can now see a Mold/MCS doctor with insurance coverage !!

Another cool thing; he wants to oversee the detox protocol (great) as he warned me that some mold doctors can detox too fast and detox out things that the body actually needs…eesh.  I've heard this warning from other Canaries....so I’m ALL for having him as an advisor.  He wants to follow up with me in four months….so if it helps he can refer other MCS sufferers.

I have complete respect for this doctor and I understand his stance as a western MD and am grateful for the chance to work with a Mold/MCS specialist.
More to come…..

Safe Housing

Once you develop MCS, housing can become very complicated.

I have a beautiful home that was successfully rid of mold but I can’t live there.  The drywall and paint can take up to a year and a half (some people say longer) to totally off gas the Volatile Organic Compounds (VOC‘s) plus I had installed new laminate flooring that will continue to off gas for up to a year, maybe more.  All the new purchases, furniture, couches, mattress, bedding, clothes etc..………THOSE things I could have done something about, but not the repair work and unfortunately I can‘t afford to wait it out…..especially now that I‘m not working.

If I’d known about the possibility of MCS I would have installed tile, and had the repairmen use Low or No VOC materials …….or HECK, I would have just left the damn hole in the wall open….at least I’d be able to live in my own home.

I’m actually one of the lucky few who HAD mold coverage so I was able to have the mold properly removed.  Most insurance companies have (quietly) dropped mold from their policies in recent years and many policy holders learn the hard way that they are not covered.  Unless they have a ton of money, because it’s expensive to have mold properly removed………..many are forced to abandon their home………..and then they can’t even sell it if they haven’t gotten rid of the mold.  Believe me I’m counting my blessings on this one!

You’ll hear me use the term *safe housing* and what that means to Canaries is………..mold free, fragrance free, no pesticides and no recent repairs….recent being a subjective word.

There are several sites posting ads for “mscsafehousing” but sadly there is a glut of people in search and so few homes available…………most of which are unaffordable and would take you geographically away from everyone you know anyway
.
The house I rented in the desert wasn’t working so I’m back at Marks…in San Luis Obispo.  It had been painted 6 months ago and I was hoping it would be ok…but not so much.  And the isolation…..Not so good for me.

So the search continues.

Multiple Chemical Sensitivity (MCS)

It is common to develop MCS as a result of mould exposure or as a result of ANY toxic exposure for that matter.  On top of the devastating and paralyzing effects this can have on your life it is also one of the most difficult things for some people to understand or believe.  Most simply can’t/don’t believe the severity of your reactions and think we‘re being fanatic, paranoid or over dramatizing an allergic reaction.  Depending on genetic factors, liver function but mostly the level of toxic exposures, one can develop this condition.  As the body becomes more and more toxic it looses the ability to rid the toxins, these then get stored in muscles, fat tissue and organs….and the body goes into toxic overload….. then any trace amount of poison will make you very sick.

It seems like the perfect recipe for disaster is often long term low level exposure to toxins (in my case mould) combined with prolonged stress, physical or emotional.  Then if you add myriad medications to the mix…..that will often flip the switch and result in MCS.

People with MCS call themselves Canaries…as in the proverbal Canary in the Coal Mine……….to serve as a warning to others.  Many believe that we are only the beginning as more and more people are developing this condition every day due to our toxic times combined with modern day stress, one of the most toxic things that can happen to the body.  The human body is simply not equipped to process out all the toxins that are a part of our daily lives especially if you live or work in a moldy environment, work with paints or other chemicals and take medications.

We’ve been lulled into a false sense of security when it comes to our toxic world…..Yes we have come very far in regards to cleaning up air quality….with auto emission controls and regulating industrial pollutants, overall the air we breathe is much better.  But in other ways we’ve gotten worse and most people are unaware of this….concerning the products we put in and on our bodies.  Clothes we buy are literally sprayed with pesticides and it can take 5-7 washes to get it all out.  In the meantime we are bathing our skin in these poisons all day long.  Unless you buy all organic, the food we eat is full of pesticides too…you can wash that apple all day but the poison is INSIDE the apple.  Fragrances are more poisonous then ever with the new ad campaign claims of “New Longer Lasting Scent”.

People have been sick from mold since the beginning of time but These times are very different.

I’ll try to explain in my own words what MCS is and how it effects my life.

First off this is not simply an allergic reaction.  The symptoms that I experience which are pretty common with MCS are….headache with a dizzy spaced out feeling.  Sometimes I get confused and feel foggy in the head.  Depending on how long the exposure is…..it can take hours or up to a full day and a half to recover if I don’t re expose myself again  What should be a normal outing usually turns into a tearful dash to my car if anyone is wearing fragrance, has used dryer sheets (the WORST offender of all) or smells like cigarettes.  Paint fumes, formaldehyde, pesticides, plastic or any kind of glue is big trouble as well so that makes most stores off limits.

Housing can become a HUGE problem since any place that’s been recently renovated, painted or has new carpet will only make you sicker and the search for *safe housing* can become a hopeless mission.  Sadly many end up living in their cars or tents.

Someone with MCS told me he feels like an alien on his own planet.  I feel like a leper (in reverse) or like a ghost floating around unable to make contact with the real world.  It seems like there is no place on this planet for me.

The isolation is unbearable. If you know someone who says that they have this condition…..Believe them.