Re: Self-defeating actions [WAS: What can off gas and wh...

[Guest guest]

Funny, regarding bravery. Many people asked if I was afraid to live that way

being a woman alone on the road & in the woods. For emphasis my response was

always the same, " I'm afraid of dryer sheets. " ... :-) of course fragrance etc

too.

>

> ,

> Your story was very moving and I commend your bravery and not giving up. I am

so

> happy after all that sorrow you where finally able  to  find place to call

home.

>

> God Bless !!

> dragonflymcs

> Mayleen

[Guest guest]

I'm really in a funk. One small goal a day is about all I can handle.

Sent from my iPhone

On Aug 15, 2010, at 9:15 PM, mnpearl@... wrote:

,

I never put more than 5 things on any list. Too easy to talk myself out

of facing it otherwise.

Jean

Posted by: " safersmilesdentallab " _safersmilesdentallab@... _

(mailto:safersmilesdentallab@...?Subject=

Re:%20Self-defeating%20actions%20%20[WAS:%20What%20can%20off%20gas%20and%20wh...\

) _safersmilesdentallab _

(safersmilesdentallab)

Sun Aug 15, 2010 6:54 pm (PDT)

My brain issues are what I have the hardest time dealing with. Overwhelm

was my first symtom years before anything else. Multitasking was impossible.

I make catagorized lists over & over - in different colors or I'd never

get anything accomplished. Sometimes I look at lists and am too overwhelmed

to do any of it. That's when it time to catagorize again with shorter

separate lists.

[Guest guest]

I do think your story is incredible! I wish I could ask you where you went, how

you kept yourself clean, whether you had a tent, etc...

Sent from my iPhone

On Aug 15, 2010, at 9:35 PM, " safersmilesdentallab "

<safersmilesdentallab@...> wrote:

Funny, regarding bravery. Many people asked if I was afraid to live that way

being a woman alone on the road & in the woods. For emphasis my response was

always the same, " I'm afraid of dryer sheets. " ... :-) of course fragrance etc

too.

>

> ,

> Your story was very moving and I commend your bravery and not giving up. I

am so

> happy after all that sorrow you where finally able to find place to call

home.

>

> God Bless !!

> dragonflymcs

> Mayleen

[Guest guest]

Social services put me through the mill every time. I'd get exposures in the

office, had to call over & over, make copies of all kinds of documents (more

exposures) driving into town from the woods (more gas)...they COST me

money.Once, I followed in the trail of a smart cookie I met. She forged the path

explaining MCS etc & gave me the details. One place would give you money if you

were about to be evicted but only if you could pay next month on your own so you

had to have proof of a one-time financial burden that recently strapped you. The

same with electric. She convinced a friend to write letters for us as proof of

all the stuff they required. That led to a few gas cards & a $50 grocery voucher

that you had to use in one shot so I bought stuff for her friend & got the

money(food intolerances & no room for a $50 purchase.) There were a few other

things that got paid for. It all came to $523. These were charities not gov

agencies &

it was the only time I got help. Every other time the effort used up so many

brain cells it made it more difficult to deal with daily living. I did come to

the top of a section 8 list 2 x...when I was hundreds of miles away for better

weather. For that I called list after list all over the U.S. & asked how long

the list was & applied to the shortest ... & the least complicated form to fill

out. You can get mail delivered to any PO using your name> General Delivery,

>the town name & zip code. They will forward for free too. SS won't accept this

as a address though & you can't get a PO box without proof of local residence.

When I got to CA I tried to get help again(glutten for punishment). All someone

could offer was the suggestion of switching my SS to CA since it pays more. I

got an address at a UPS Store that didn't require home address info - $162 for

one year - Cheaper by the year. Who knew that in 6 months I wouldn't need it.

The area had tons of homeless with no vehicle to live in either. I thought hey

these people can't even get an SS check. There were some services like hot meals

but I can't be in a public place. Near here they are considering offering

extended stays at campgrounds for the homeless. The rule of thumb is usually a

30 day stay. Now that's some good thinking ! With sensitivities it may be too

crowded - & think of the riff raff? I, homeless & all, was wary of the homeless.

I used to reprimand myself for passing judgement just like normal people passed

judgement on me ! I was always stared out- & if I was away from the truck coming

out of a store my vehicle was stared at. I was always afraid of a fragrant cop

picking me up for vagrancy & then having a reaction that made me " crazy " . Gee I

have stories about.......I should write a book.

>

> No, I unfortunately have the same story.  We face homelessness again every

> month.   Secti

[Guest guest]

I thought , at worst, I'd have a driveway to live in in my vehicle that I won't

have to run away from & a bathroom to use that won't be made inaccessible with

cleaning products 2 minutes before I planned to go in...even if the house was

intolerable to be in for long periods of time.

> >

> >

> >

> > ,

> >

> > WOW! What a great story of your journey. Your little town sounds like

> > paradise.

> >

> > Sharon

> >

> > In a message dated 8/15/2010 7:22:29 A.M. Pacific Daylight Time,

> > safersmilesdentallab@ writes:

> >

> > I was reacting to everything before I hit the road. To top it off I had to

> > leave my house for 80 hrs a week & sit in parking lots whenever the

> > neighbor burned something or did laundry. Next to the door I kept a small

bag

> > packed with a snack & hot water in a thermos-ready to grab on my way out. I

> > had it down to where I could get out of the house & into my vehicle within

30

> > seconds.

> > Little by little every time I had good moments I put my stuff in storage &

> > packed my vehicle for life on the road. After 3 days on the road I was a

> > new woman.

> > Avoiding chemicals

>

[Guest guest]

I have to agree with the folks who have balked at hints of blame and judgment

coming from other members of this group.  We receive enough judgment and doubt

from the world at large; we do need to rely on " having a soft place to fall "

with peers who have faced many of the same challenges.  We can have an honest

discussion without blaming a victim of exposure for his/her own symptoms.  Just

thought I'd share my reactions to those of you who have obviously interacted

with one another for quite some time.  I send loving energy to all...

_______________________________

From: " mnpearl@... " <mnpearl@...>

Sent: Sun, August 15, 2010 3:03:23 PM

Subject: [] Re: Self-defeating actions [WAS: What can off gas and

wh...

 

Sharon,

I no longer have the problems I did before. The things I mentioned are

not just from my own experience but from others as well.

I commented that no one should tell someone who is struggling with health

and financial issues that it's their fault that they are sick. I stand by

this statement.

Jean

[Guest guest]

Quincy CA. I am HOOOOOOOOOME.

>

> Wow is right! Where is this place! So glad you found a haven.Sam

>

> --- On Sun, 8/15/10, snk1955@... <snk1955@...> wrot

>

> ,

>

> WOW! What a great story of your journey. Your little town sounds like

>

> paradise.

>

>

> . I'm driving up a winding mountain road where the trees

>

> didn't make me " high " , the plantlife wasn't so thick as to be moldy & I

>

> wasn't whacked by the fragrance of the National Forest pit toilet chemicals I

>

> had encountered that covered 100 square mile area! I then passed a few quant

>

> houses & was compelled to write in my journal, " Nice, I don't have to look

>

> any further. " I took a wrong turn & ended up in the town - that had a

>

> health food store ! with everything I needed ! and I didn't need a mask in

>

> there, nor in the regular grocery store, or the post office...or the

>

> FRAGRANCE-FREE HOSPITAL ! ...with a Medicaid doctor on staff that knows what

MCS is! 

>

[Guest guest]

I do believe the mind & brain can fix a lot if you know how to set it in the

right direction & be honest about any blocks to healing you may have...i.e. one

block I had was that I was never any good at making money & if I heal I had

better get to work - even if it's Mc s. Why would I want to heal?

Food for thought. An MCS friend of mine did a lot of reading on brain research.

There was woman with schizophrenia (sp) studied. She had 7 different

personalities. Only one of them had MCS.

>

> I do not have the experience to back you what I am going to say here. I am

learning and sorting through all of this. I have a tendency toward OCD and to be

very fearful. I also know my symptoms are very real, and I have been very sick

and it has been very difficult for me to sort out my role in my illness..

meaning what and how to interpret, what my role is to help me get better... what

is and what is not beyond my control... where my sanity lies in all of this..

where my fear and worries can take me and do I really want or need to go there..

hard hard hard to sort all this out, esp as Carl stated you get to the point

where you dont and cant trust your gut reaction.. because for me at least there

is a lot of fear and confusion (facts) there. Add that to the masking effect,

etc...

>

> I have been living with a lyme and babesia diagnosis for the last 3 years, CFS

the last 1-2 years. I am terrified of nature and ticks. I have been terrified

and traumatized by every symptom that I have.. the diganosis of lyme itself

(cure unknown... the most virulent, stealthy bacteria that exists) and the fact

that i have the " dreaded gene " as per Shoemaker and according to him may never

get well. Ive had a lyme doctors wife who is his patient screener turn me down

because my case is too coplicated bcecause i have this dreaded gene... telling

me that i was one of the 25% who might not get well and he has his hands full

with the other 75%. Fun.

>

> My sister was very sick for many years. She had a near death experience and

then started healing. I wouldnt say she is 100% but she is living a productive

life and is happy. When I first was diagnosed and for more than a year, I

hounded her to get tested for lyme thinking surely she had it too and it was the

sole cause of her illness.

>

> Her attitude was that she is well and she doesnt want to go back there

again.. I didnt realize what she meant as clearly as I do now.. illness can be a

place of fear and torment, obsession, worry... for good reason, but she had made

it out of that plce and had no intention of going back for the sake of a

diagnosis.

>

> I talked with her a few days ago and we put together that when she was her

sickest, she was living in the basement of the house my parents owned at the

time. She started getting well when she moved out I think to several homes that

my parents owned (my father buys and sells real estate at times). She ended up

in a studio appt living next my parents who were taking care of her children and

that is where she got well. It was new and she had few of her original

belongings with her though I am sure she had some possibly including clothing

and papers.

>

> She also had the NDE which had a profound impact on her I think in an

" energetic " way as well as a spiritual and mental way. She stopped fearing

death, stopped fearing her symptoms (and this was a huge one.. she would have

paralysis strike her out of the blue and if she reacted in any way emotionally,

it would last longer.. so she had to stop reacting.. she would make herself

calmly count down from 100). She started believing in her body's ability to heal

and believing it was a matter of time.,, she was healing.. it was all going to

be OK in time and it took 3 years.

>

> I am not saying that belief healed her.. I am saying it helped her and I am

not saying belief in healing is easy because I am struggling with it but I like

the way someone in lymeland recently framed it... we ally with healing or we

dont. Whatever healing choice you make, ally with it. Ally with your path and

believe in the process even if it is one day at a time, even if it is not a

" perfect " path.. the path might very well wind as you learn more.. it doesnt

have to be set in stone to ally with it.

>

> One thing my sister told me was that she would talk her body down. When it

would become hyper alert or sensitive (she would have extreme dysautonomia where

her BP and pulse would swing dangerously.. 50/30 to 210/160 ranges among other

crazy symptoms). She learned not to trust ERs because they didnt know how to

address and she learned to work with her body thorugh this process.. not saying

dont go to ER.

>

> Later I was introduced to programs like amygdala retraining where you also

learn to talk your body down and realized these programs are saying the same

thing she did. Im not saying this is a cure though I have heard some people with

MCS and CFS have done well with the program.. I realize this is similar to what

my sister did (she also focused on trigger point therapy and fascia lymphs

massage to keep working the toxins out).

>

> Im probably not going to do this justice, but I will try... Gupta claims that

the amygdala (emotional part of the brain) become hyper stimulated by a virus,

toxin, extreme stress, bacterial infection and then becomes hyperalert so much

that it will react to things it would not have reacted to in the past.. the

alert level has been raised and stuck at raised.. then you have a viscous

cycle.. exposure, symptom, interpretation by amygdala (danger!!!) chemical

reaction in the body reinforcing the amygdala.. his program works to re-train

the amygdala.

>

> For me, I can see this at play as my sister did instinctively.. she knew to

talk her body down and if she didnt, her cycle would become worse and worse.. as

with the paralysis.. if she reacted it would get worse.. her symptoms gave her a

clear cut example of how this can play out.

>

> This is also very similar to OCD treatment.. you back off the compulsion to

the obsession and you have to feel the anxiety until it releases but then the

cycle begins to diminish.

>

> I am NOT saying this is all in my head or all you anyone's head. I am thinking

it makes a ton of sense that the body-mind can go into hyperalert and create a

cycle that might not have to be.

>

> So I am trying to think of this as I plan out what we are going to do here. It

is so so easy for me to get into fight or flight and so easy to be so hard on

myself no matter what decision I make.. esp when I am so fearful that one spore

will do me in.

>

> I realize that I have a problem sorting out fears.. the ones that I am

generating or others are generating for me and fears that are warning signs...

you know fear is an emotion that tells you to change what you are doing and is

not intended to be lived out of. You fell the alarm, you make an adjusting

reaction, you let go. Kind of hard to do when mold is everywhere. If mold is the

evil doer and the evil doer is everywhere then I am stuck in a war and

eventually (post) traumatic stress syndrome sets in.

>

> Is this making any sense? I dont know if this applies to anyone but me, but I

know it applies to me and it will be something that I consider as I move

forward. Living with chronic illness can be hell and I dont want to make it more

of a hell than it has to be.

>

> That said.. we are moving with dog, no clothing, bedding, furniture will go

with us. We will see frome there. My husband is stayign behind (work) and he

wants to start getting rid of what we are gettnig rid of and storing the rest.

We will most likely be getting rid of alot because we have accumulated so many

things we dont need. It will be a purging and the most important special things

will go to storage. Then we will have a proper post remediation cleaning..

something we were never advised to do.. floors, walls, ceilings hepa vacced.

Ther will be no furniture so everying left standing wiped down well.. HVAC

addressed, filters etc..

>

> Then I might decide to try to revisit the house. At this point I see it as my

sick house and have no desire to go back. We shall see.

>

> I also like the idea of introducing one new (old) thing at a time and seeing

how that goes. i also see that no matter where we go there will be mold issues.

We have too much house than we can keep up with. We have too many things

cluttering our house.. not again.. I hope.

>

> I also realize there is more to address than mold reactivity and toxins.. for

me there is potential lyme (this was a clinical diagnosis,not confirmed by a

test.. which of course are very inaccurate) and there is babesia. I also have

candida to deal with, potential parasites and other gut issues as well as KPU

and methylation. I also may have a mycoplasma infection. I have moderate MCS as

well. A problem for me is figuring out what is causing what symptom. I am hoping

the new " safe-er " place will help with some masking issues. Oh.. also heavy

pesticide exposure as a child and way too many vaccines. Not yet tested for

XMRV.

>

> What gets me is that my sister who is now doing fine could care less what she

has in her body because she is fine.. its like my husband who also has one of

shoemaker's dreaded genes.. he is fine so he could care less. It looks like so

many things can play together to create illness and there is a threshold.. some

people get slammed and others keep draining the bathtub, at least for now and

maybe for the rest of their lives.. I dont know. I just know my tub is very full

and the drain has been very clogged. I am guessing this was true for my sister

but somehow her body healed enough that she was not overwhelmed by the tub. She

said she was more hypersensitive but that went away enough that her quality of

life is not effected by it.

>

> Robin

>

[Guest guest]

:-) & I never keep one with too much crossed out - it confuses me. I start a new

one. Today I strted emtying my kitchen. If I doidn't have the list of what to

put where I would have been lost.

>

>

> ,

> I never put more than 5 things on any list. Too easy to talk myself out

> of facing it otherwise.

> Jean

>

>

>

> Posted by: " safersmilesdentallab " _safersmilesdentallab@... _

> (mailto:safersmilesdentallab@...?Subject=

>

Re:%20Self-defeating%20actions%20%20[WAS:%20What%20can%20off%20gas%20and%20wh...\

) _safersmilesdentallab _

> (safersmilesdentallab)

> Sun Aug 15, 2010 6:54 pm (PDT)

> My brain issues are what I have the hardest time dealing with. Overwhelm

> was my first symtom years before anything else. Multitasking was impossible.

> I make catagorized lists over & over - in different colors or I'd never

> get anything accomplished. Sometimes I look at lists and am too overwhelmed

> to do any of it. That's when it time to catagorize again with shorter

> separate lists.

>

>

>

>

>

[Guest guest]

I really should write a book. I answered some of your questions in another post.

Never a tent. Never anything left outside overnight either...so you can run away

at the drop of a hat. Anything left outside during the day (not much at that)

was inspected thoroughly for insects before re-entry. One onlooker asked if I

needed a magnifYing glass ! When I ate with my hands I used a disposable vinyl

glove if there was no running water. Actually I calculated that a glove costs

less than enough soap for before & after eating. If I didn't have running water

nearby it was easier to rinse off baking soda used as soap when showering using

gallon water jugs... & you can always find tolerable " soap " anywhere on the road

that way :-). You can wash your hands by setting a jug down & tipping it but you

go through water fast that way. I made one with an on/off garden hose attachment

on the bottom like the 2 1/2 gallon ones are. It did leak - I kept in on the

roof in a milk crate bingied on.

Lots of precautions about condensation have to be taken when you have a vehicle

stuffed. Martha shelves & smaller grating was on every floor area with

borax under it. My suitcases were the ones on wheels for airflow underneath.

Clothes got damp & were taken out often to dry... & warm sun-dried clothes were

put in loosely & allowed to reach suitcase temp before repacked. I had a Thule

on my roof & everything in it was in tupperwares & duffle bags - in case the

Thule broke I could collect up the mess more easily. Just the thought of a

disaster like that makes my skin crawl. Camping in some states require an entry

fee plus a camping fee. The entry fee (cheaper) allows you to take a shower &

stsay til dusk. I believe every state offers a pass to camp free or at a

discount for it's disabled residents & sometimes non-residents.

>

> I do think your story is incredible! I wish I could ask you where you went,

how you kept yourself clean, whether you had a tent, etc...

>

> Sent from my iPhone

>

> On Aug 15, 2010, at 9:35 PM, " safersmilesdentallab " <safersmilesdentallab@...>

wrote:

>

> Funny, regarding bravery. Many people asked if I was afraid to live that way

being a woman alone on the road & in the woods. For emphasis my response was

always the same, " I'm afraid of dryer sheets. " ... :-) of course fragrance etc

too.

>

>

[Guest guest]

CA is really beautiful. There were a few states with beautiful areas but CA is

packed with them. Made me feel I wouldn't be missing anything never taking a

" vacation " again.

>

>

>

> Oh yes. That is a beautiful area of California.

>

> In a message dated 8/15/2010 9:14:44 P.M. Pacific Daylight Time,

> safersmilesdentallab@... writes:

>

> Quincy CA. I am HOOOOOOOOOME.

>

>

[Guest guest]

That is veyr interesting. With amygdala retraining, gupta keeps repeating that

this is not in your head in teh sense that you are not making it up and you are

not creating it out of a vaccuum.. it is a wiring issue that is re-inforced by

the body's own reaction. We can add to that reinforcement when we also react to

the body's reaction.

Its like the body freaks out automatically and this reinforces to the amygdala..

oh yeah.. you are so on track.. there is certainly danger here..

Then the mind itself.. thoughts ..and feelings (which are also chemical in

nature thus also part of the body's response but also part of the mind's

response) also reinforces teh amygdala..

yeah.. you got it right amygdala.. keep up the good work.

Gutpa has you very consciously address the amygdala.

Robin

>

> I do believe the mind & brain can fix a lot if you know how to set it in the

right direction & be honest about any blocks to healing you may have...i.e. one

block I had was that I was never any good at making money & if I heal I had

better get to work - even if it's Mc s. Why would I want to heal?

> Food for thought. An MCS friend of mine did a lot of reading on brain

research. There was woman with schizophrenia (sp) studied. She had 7 different

personalities. Only one of them had MCS.

>

[Guest guest]

Robin,

It can be very hard to accept privately, let alone reveal publically,

the difficulties you are experiencing. The difficult challenges you

face and deal with. Especially when there are some you cannot

conquer. Thanks for telling us.

What I read between the lines is how you attempt to deal with

uncertainty. We all abhor uncertainty. We want absolute facts,

absolute knowledge, absolute solutions, magic bullets, and

absolute future. We want the suffering to stop. Now!

One of the more difficult factors of any chronic condition is that

there is a reason it is called chronic. Chronic means there is no

cure. Or, at least, not yet.

If no cure then we are left at the mercy of not knowing if it will get

worse or better, when, and how will it leave us in our life. We are

hard-wired to fight not knowing, to obliterate ignorance, to

conquer life! And when we can't we feel failure, weakness and

defeat. Isolation. And intense fear!

How do we deal with conflicting information? We search the

internet and participate in groups like this one and more often

than not come away even more confused. How do we know if we

are in a burning building or in a non-burning building but perceive

it as burning? Others say you must leave. But others don't leave

and successfully fix their house. How do you figure out what is

true for you? What if you decide wrong?

We must listen to the experience of others and test it to see if it is

also true for us. There is a reason there is no cure. Nobody

knows. Yet. For most people. And you are a specific individual

whose condition may be the only one in the world exactly that

way.

Moving on with life as best we can is what we must do. For some

that means a life of desparate lonliness. For others it's limited but

not isolated. Many eventually figure out enough and have a body

capable of recovering quickly - like your sister.

Good luck with your journey. Focus on what you try and what

happens. Not on what happens to others. Focus on your unique

adventure. Let us know what you discover.

Carl Grimes

Healthy Habitats LLC

-----

I do not have the experience to back you what I am going to say here. I

am learning and sorting through all of this. I have a tendency toward

OCD and to be very fearful. I also know my symptoms are very real, and I

have been very sick and it has been very difficult for me to sort out my

role in my illness.. meaning what and how to interpret, what my role is to

help me get better... what is and what is not beyond my control... where

my sanity lies in all of this.. where my fear and worries can take me and

do I really want or need to go there.. hard hard hard to sort all this out,

esp as Carl stated you get to the point where you dont and cant trust your

gut reaction.. because for me at least there is a lot of fear and confusion

(facts) there. Add that to the masking effect, etc...

I have been living with a lyme and babesia diagnosis for the last 3 years,

CFS the last 1-2 years. I am terrified of nature and ticks. I have been

terrified and traumatized by every symptom that I have.. the diganosis of

lyme itself (cure unknown... the most virulent, stealthy bacteria that

exists) and the fact that i have the " dreaded gene " as per Shoemaker and

according to him may never get well. Ive had a lyme doctors wife who is

his patient screener turn me down because my case is too coplicated

bcecause i have this dreaded gene... telling me that i was one of the 25%

who might not get well and he has his hands full with the other 75%.

Fun.

My sister was very sick for many years. She had a near death experience

and then started healing. I wouldnt say she is 100% but she is living a

productive life and is happy. When I first was diagnosed and for more

than a year, I hounded her to get tested for lyme thinking surely she had

it too and it was the sole cause of her illness.

Her attitude was that she is well and she doesnt want to go back there

again.. I didnt realize what she meant as clearly as I do now.. illness can

be a place of fear and torment, obsession, worry... for good reason, but

she had made it out of that plce and had no intention of going back for

the sake of a diagnosis.

I talked with her a few days ago and we put together that when she was

her sickest, she was living in the basement of the house my parents

owned at the time. She started getting well when she moved out I think

to several homes that my parents owned (my father buys and sells real

estate at times). She ended up in a studio appt living next my parents

who were taking care of her children and that is where she got well. It

was new and she had few of her original belongings with her though I am

sure she had some possibly including clothing and papers.

She also had the NDE which had a profound impact on her I think in an

" energetic " way as well as a spiritual and mental way. She stopped

fearing death, stopped fearing her symptoms (and this was a huge one..

she would have paralysis strike her out of the blue and if she reacted in

any way emotionally, it would last longer.. so she had to stop reacting..

she would make herself calmly count down from 100). She started

believing in her body's ability to heal and believing it was a matter of

time.,, she was healing.. it was all going to be OK in time and it took 3

years.

I am not saying that belief healed her.. I am saying it helped her and I am

not saying belief in healing is easy because I am struggling with it but I

like the way someone in lymeland recently framed it... we ally with

healing or we dont. Whatever healing choice you make, ally with it. Ally

with your path and believe in the process even if it is one day at a time,

even if it is not a " perfect " path.. the path might very well wind as you

learn more.. it doesnt have to be set in stone to ally with it.

One thing my sister told me was that she would talk her body down.

When it would become hyper alert or sensitive (she would have extreme

dysautonomia where her BP and pulse would swing dangerously.. 50/30

to 210/160 ranges among other crazy symptoms). She learned not to

trust ERs because they didnt know how to address and she learned to

work with her body thorugh this process.. not saying dont go to ER.

Later I was introduced to programs like amygdala retraining where you

also learn to talk your body down and realized these programs are saying

the same thing she did. Im not saying this is a cure though I have heard

some people with MCS and CFS have done well with the program.. I

realize this is similar to what my sister did (she also focused on trigger

point therapy and fascia lymphs massage to keep working the toxins

out).

Im probably not going to do this justice, but I will try... Gupta claims that

the amygdala (emotional part of the brain) become hyper stimulated by

a virus, toxin, extreme stress, bacterial infection and then becomes

hyperalert so much that it will react to things it would not have reacted

to in the past.. the alert level has been raised and stuck at raised.. then

you have a viscous cycle.. exposure, symptom, interpretation by

amygdala (danger!!!) chemical reaction in the body reinforcing the

amygdala.. his program works to re-train the amygdala.

For me, I can see this at play as my sister did instinctively.. she knew to

talk her body down and if she didnt, her cycle would become worse and

worse.. as with the paralysis.. if she reacted it would get worse.. her

symptoms gave her a clear cut example of how this can play out.

This is also very similar to OCD treatment.. you back off the compulsion

to the obsession and you have to feel the anxiety until it releases but then

the cycle begins to diminish.

I am NOT saying this is all in my head or all you anyone's head. I am

thinking it makes a ton of sense that the body-mind can go into

hyperalert and create a cycle that might not have to be.

So I am trying to think of this as I plan out what we are going to do here.

It is so so easy for me to get into fight or flight and so easy to be so hard

on myself no matter what decision I make.. esp when I am so fearful that

one spore will do me in.

I realize that I have a problem sorting out fears.. the ones that I am

generating or others are generating for me and fears that are warning

signs... you know fear is an emotion that tells you to change what you are

doing and is not intended to be lived out of. You fell the alarm, you make

an adjusting reaction, you let go. Kind of hard to do when mold is

everywhere. If mold is the evil doer and the evil doer is everywhere then I

am stuck in a war and eventually (post) traumatic stress syndrome sets

in.

Is this making any sense? I dont know if this applies to anyone but me,

but I know it applies to me and it will be something that I consider as I

move forward. Living with chronic illness can be hell and I dont want to

make it more of a hell than it has to be.

That said.. we are moving with dog, no clothing, bedding, furniture will

go with us. We will see frome there. My husband is stayign behind

(work) and he wants to start getting rid of what we are gettnig rid of and

storing the rest. We will most likely be getting rid of alot because we have

accumulated so many things we dont need. It will be a purging and the

most important special things will go to storage. Then we will have a

proper post remediation cleaning.. something we were never advised to

do.. floors, walls, ceilings hepa vacced. Ther will be no furniture so

everying left standing wiped down well.. HVAC addressed, filters etc..

Then I might decide to try to revisit the house. At this point I see it as my

sick house and have no desire to go back. We shall see.

I also like the idea of introducing one new (old) thing at a time and

seeing how that goes. i also see that no matter where we go there will be

mold issues. We have too much house than we can keep up with. We

have too many things cluttering our house.. not again.. I hope.

I also realize there is more to address than mold reactivity and toxins..

for me there is potential lyme (this was a clinical diagnosis,not confirmed

by a test.. which of course are very inaccurate) and there is babesia. I also

have candida to deal with, potential parasites and other gut issues as well

as KPU and methylation. I also may have a mycoplasma infection. I have

moderate MCS as well. A problem for me is figuring out what is causing

what symptom. I am hoping the new " safe-er " place will help with some

masking issues. Oh.. also heavy pesticide exposure as a child and way too

many vaccines. Not yet tested for XMRV.

What gets me is that my sister who is now doing fine could care less what

she has in her body because she is fine.. its like my husband who also has

one of shoemaker's dreaded genes.. he is fine so he could care less. It

looks like so many things can play together to create illness and there is a

threshold.. some people get slammed and others keep draining the

bathtub, at least for now and maybe for the rest of their lives.. I dont

know. I just know my tub is very full and the drain has been very clogged.

I am guessing this was true for my sister but somehow her body healed

enough that she was not overwhelmed by the tub. She said she was more

hypersensitive but that went away enough that her quality of life is not

effected by it.

Robin

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[Guest guest]

Sally,

You're right and thanks for the message. It is similar to Jean's.

I started this whole " deserving " issue with one of my e-mails. I

was not " responsible' with my comment because I didn't properly

clarify it.

The context was people who are searching for cures while acting

as if they know what is best for us, while living in horrible

conditions. When others try to help by suggesting they need to

remove the exposure sources or remove themselves they give a

whole list of excuses as to why they cannot. The usual conclusion

is they deserve their fate. That is more what I was trying to

convey with my shorthand comment.

I will maintain this position when all help is refused, discounted,

or if self-sabotage is active. Nobody else is to blame because

they all tried to help but help was deflected and otherwise

rejected.

But if those same people reveal their " secret life " that they

understand their situation and state what they can and cannot do,

and have come to terms with their life, then that is an entirely

different story. What is first presented as a horror is actually a

sweet success! Like the story in my previous post about the two

women. One was devastated because she could only climb 2-3

mountains a year and the other who was ecstatic despite

knowing she would never get of disability. One was rejecting what

she needed to do and was blaming others. The other accepted

her reality and was making the best of it.

Not only do I not blame them, not only am I not frustrated with

them, but then I celebrate them! They have achieved what we all

desire but find so difficult to allow.

I risk still not being clear so let me know if this makes sense to

you.

Carl Grimes

Healthy Habitats LLC

-----

I have to agree with the folks who have balked at hints of blame and

judgment

coming from other members of this group. We receive enough judgment

and doubt

from the world at large; we do need to rely on " having a soft place to fall "

with peers who have faced many of the same challenges. We can have an

honest

discussion without blaming a victim of exposure for his/her own

symptoms. Just

thought I'd share my reactions to those of you who have obviously

interacted

with one another for quite some time. I send loving energy to all...

_______________________________

From: " mnpearl@... " <mnpearl@...>

Sent: Sun, August 15, 2010 3:03:23 PM

Subject: [] Re: Self-defeating actions [WAS: What can off

gas and

wh...

Sharon,

I no longer have the problems I did before. The things I mentioned are

not just from my own experience but from others as well.

I commented that no one should tell someone who is struggling with

health

and financial issues that it's their fault that they are sick. I stand by

this statement.

Jean

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[Guest guest]

well, sorry but I've just got to stop you right here.

sounds like your friend was reading a study that someone like Gots may have

dreamed up. I'd be careful about studies you read on line and believe.

many people with schizophrenia have many fears of many things.

they can read about something and if it scares them they can start believeing

it's happening to them. thats a different kind of brain illness, you know that

dont you?

haveing brain disfuctions and damage or part of your frontal lobes go missing ,

CNS damage,PNS damage, severe sinus disease,or loseing complete function of your

lower limbs or getting cancer,because of WDB exposure is not something you can

heal with possitive thinking.

in other words, people who make mountains out of mole hills can make them into

mole hills again, but a real mountain is always a mountain and you have to find

other ways to get around it, or over it.

you might also want to consider that your body did some healing while you were

on your journey and a place that you might have not tolerated before became more

tolerable, thats also a possability.

if a person is able to heal theirself from this illness staying possative is

good but it's more likely that they healed because they removed theirself from

that invironment and they were still at a stage of being able to heal. big

difference there.

this is where people here have problems, they can only look at this through

their eyes and their own experience and think everyone else must fall into that

same level of illness as they have or had. it's just not so.

so if you fell you healed by possitive thinking thats fine for you but I

wouldn't go so far to say that everyone can or well because your getting close

to basically saying it's all just in our heads and thats going to upset those

that know better.

I've been around for awhile and have heard many self proclaimed cures,

everything from I did it because I'm so damn smart, to, I did it because of some

machine that I stuck in my ear.

I dont thank anyone here would have blocks toward healing, it's

what everyone strives for. if your really ill from this, thats what you pray for

every day, is for it to go away. I can garentee you that no one with illness is

happy with it and would trade anything, even if it meant a haveing to work at

Mcs for the rest of their lives.

I be honest with you, I believe that anyone who does heal from this is damn

lucky and they got out before any permenant damage was done.

those people may very well heal within a short period of time just by doing

nothing more than getting out of the WDB. but to than try to claim that it was

all because of some great power they had over mind or body, is BS.

sorry to be so blunt but thats just the way I see it.

staying possative is important, but it's not going to heal anyone from this

illness unless they are still at a self healable stage.

so really, your food for thought is just way off base.

>

> I do believe the mind & brain can fix a lot if you know how to set it in the

right direction & be honest about any blocks to healing you may have...i.e. one

block I had was that I was never any good at making money & if I heal I had

better get to work - even if it's Mc s. Why would I want to heal?

> Food for thought. An MCS friend of mine did a lot of reading on brain

research. There was woman with schizophrenia (sp) studied. She had 7 different

personalities. Only one of them had MCS.

>

>

[Guest guest]

That is so interesting . Dr. Singer comments that

schizophrenia can be neurotoxicity. I would guess that multiple personalities

can be

too. I don't believe in " mental " illness. The brain is an organ like

your heart etc. and can certainly malfunction in different ways. I do believe

though that your thoughts can have an impact on your brain and the rest of

your body for that matter. We are more than flesh and bone.

Jean

Posted by: " safersmilesdentallab " _safersmilesdentallab@... _

(mailto:safersmilesdentallab@...?Subject=

Re:%20Self-defeating%20actions%20%20[WAS:%20What%20can%20off%20gas%20and%20wh...\

) _safersmilesdentallab _

(safersmilesdentallab)

Sun Aug 15, 2010 9:27 pm (PDT)

I do believe the mind & brain can fix a lot if you know how to set it in

the right direction & be honest about any blocks to healing you may

have...i.e. one block I had was that I was never any good at making money & if

I

heal I had better get to work - even if it's Mc s. Why would I want to

heal?

Food for thought. An MCS friend of mine did a lot of reading on brain

research. There was woman with schizophrenia (sp) studied. She had 7 different

personalities. Only one of them had MCS.

[Guest guest]

Hi Carl,

I just want to add one more comment about this for everyone to think about.

Sometimes a person may just be too sick to hear what is being said. I

know from my experience that it took some time to accept that what I was seeing

was real......reactions to chemicals in the environment. Then it took

even more time to accept that so many things were causing the reactions. I

remember crying for weeks and asking why me....why my family?

We never used chemicals in the garden. We were organic before organic was

cool. We were probably one of the first to recycle.....nothing went to

the dump if it could be reused somehow. We composted. How could we get

chemical sensitivities? It seemed to be some kind of cruel joke. It was years

before we would find out that mold was the problem.

When you come to a board like this, you can't possibly know exactly where a

person is in their journey of acceptance. I can understand the

frustration of folks who have walked the walk and want to help others and

cannot

understand why they don't do what we suggest. Maybe they will in time. Maybe

they just need the time to accept where they are etc......and maybe it

won't be on our time table.

If we start judging them, they may turn away from one of the few places

they can go and know they are not going to be told they're crazy and that

it's all in their head.

We don't know where anyone is in their journey with this and we don't know

how fragile that person might be.

Maybe we can just be more encouraging and less judgmental.....sharing what

has worked for us without demanding from anyone that they do exactly the

same thing.

I don't know about everyone else here, but I've had enough judgment to last

me several lifetimes.

Jean

>Posted by: " Carl E. Grimes " _grimes@... _

(mailto:grimes@...?Subject=

Re:%20Self-defeating%20actions%20%20[WAS:%20What%20can%20off%20gas%20and%20wh...\

) _grimeshh _ (grimeshh)

Sun Aug 15, 2010 11:58 pm (PDT)

The context was people who are searching for cures while acting

as if they know what is best for us, while living in horrible

conditions. When others try to help by suggesting they need to

remove the exposure sources or remove themselves they give a

whole list of excuses as to why they cannot. The usual conclusion

is they deserve their fate. That is more what I was trying to

convey with my shorthand comment.

I will maintain this position when all help is refused, discounted,

or if self-sabotage is active. Nobody else is to blame because

they all tried to help but help was deflected and otherwise

rejected. <

[Guest guest]

I don't think I would hold someone out who has seven different

personailities w/only one having MCS as relevant to anything one way or the

other

regarding the science behind MCS. That sounds like one of those defense urban

legends to me, meant solely to cast doubt on the validity of MCS being

caused by an overload of chemicals in our society.

Sharon

In a message dated 8/16/2010 7:00:08 A.M. Pacific Daylight Time,

mnpearl@... writes:

That is so interesting . Dr. Singer comments that

schizophrenia can be neurotoxicity. I would guess that multiple

personalities can be

too. I don't believe in " mental " illness. The brain is an organ like

your heart etc. and can certainly malfunction in different ways. I do

believe

though that your thoughts can have an impact on your brain and the rest of

your body for that matter. We are more than flesh and bone.

Jean

Posted by: " safersmilesdentallab " __safersmilesdentallab@..._

(mailto:_safersmilesdentallab@...) _

(mailto:_safersmilesdentallab@..._

(mailto:safersmilesdentallab@...) ?Subject=

Re:%20Self-defeating%20actions%20%20[WAS:%20What%20can%20off%20gas%20and%20w

h...) _safersmilesdentallab _

(_safersmilesdentallab_

(safersmilesdentallab) )

Sun Aug 15, 2010 9:27 pm (PDT)

I do believe the mind & brain can fix a lot if you know how to set it in

the right direction & be honest about any blocks to healing you may

have...i.e. one block I had was that I was never any good at making money

& if I

heal I had better get to work - even if it's Mc s. Why would I want

to

heal?

Food for thought. An MCS friend of mine did a lot of reading on brain

research. There was woman with schizophrenia (sp) studied. She had 7

different

personalities. Only one of them had MCS.

Sharon Noonan Kramer

[Guest guest]

I heard a blurb on TV the other night about some celebrities (forget who)

traveling to some poorer country (forget where) to take shipping containers

and turn them into homes for people. That seems like it could be a good

solution for hypersensitivity, if there was somewhere people could go - with

a clean environment and revamp these as habitats.

_http://www.thedailygreen.com/green-homes/latest/shipping-container-homes-46

0309_

(http://www.thedailygreen.com/green-homes/latest/shipping-container-homes-460309\

)

In a message dated 8/15/2010 6:48:02 P.M. Pacific Daylight Time,

jeaninem660@... writes:

Sharon, the cheapest thing I found which also happens to of been the least

problematic was a one room attic apartment with a window unit that both

heated and cooled, all utilities paid. but I also got rent assistance from

HUD/section 8 program.

everbody hated it because of all the stairs, it had it's own intrance, no

nasty smelly hallway, and was tiny. thats one way to keep smelly family

members from comeing over.

another place I did fairly well in was a older model RV that had a really

good AC unit in it. the highest the electric bill was, was 50 bucks a

month. just couldn't stay in it in the winter and it wasn't road ready, just

parked on my property. something else to consider.

Sharon Noonan Kramer

[Guest guest]

I can see where is coming from, at this very moment Im having to decide

where Im going to move to. Because I dont have the support group others have had

Im basically in this all alone. Had I not saved the few pennies I have there's

no doubt in my mind I'd be living in a truck that could possibly be cross

contaminated

>

> Sharon,

> I no longer have the problems I did before. The things I mentioned are

> not just from my own experience but from others as well.

>

> I commented that no one should tell someone who is struggling with health

> and financial issues that it's their fault that they are sick. I stand by

> this statement.

>

> Jean

[Guest guest]

I did not say that any one thing has given me health. It's a combination... & the

most important was avoidance.

> >

> > I do believe the mind & brain can fix a lot if you know how to set it in the

right direction & be honest about any blocks to healing you may have...i.e. one

block I had was that I was never any good at making money & if I heal I had

better get to work - even if it's Mc s. Why would I want to heal?

> > Food for thought. An MCS friend of mine did a lot of reading on brain

research. There was woman with schizophrenia (sp) studied. She had 7 different

personalities. Only one of them had MCS.

> >

> >

>

[Guest guest]

--what kind of vehicle did you have?

[Guest guest]

If you need to be telling yourself that your not makeing this up,

than thats basicly saying that you are bringing on to yourself a added bodily

responce based on fear,forboding,bad exspectations,

and your leting that fear get the best of you.

stop it!

even a smell can bring forth a memory attached to that smell, if it's a bad

memory and you react to that fear, you are haveing a reaction based on fear.

this is not a reaction based on a chemical exposure from external sorces. it is

a reaction that you are bringing onto yourself.

lets say that a person has a cyst on one of their amygadala's from their WDB

exposure, do you think possitive thinking well make that go away? do you know

where the amygadala's are? what if they are damaged by WDB exposure? how do you

think this might interfere with gupta?

>

> That is veyr interesting. With amygdala retraining, gupta keeps repeating that

this is not in your head in teh sense that you are not making it up and you are

not creating it out of a vaccuum.. it is a wiring issue that is re-inforced by

the body's own reaction. We can add to that reinforcement when we also react to

the body's reaction.

>

> Its like the body freaks out automatically and this reinforces to the

amygdala.. oh yeah.. you are so on track.. there is certainly danger here..

>

> Then the mind itself.. thoughts ..and feelings (which are also chemical in

nature thus also part of the body's response but also part of the mind's

response) also reinforces teh amygdala..

>

> yeah.. you got it right amygdala.. keep up the good work.

>

> Gutpa has you very consciously address the amygdala.

>

> Robin

>

[Guest guest]

what all might be affected in the brain by a chemical re-exposure,

after a WDB exposure has caused considerable closed head TBI,

easiest path of resistance in mind, probaly what was damaged by the WDB

exposure.

so say you have a re-exposure to a chemical and some of your reaction is also

causeing mood disorders, like uncontrolable,getting very aggetated ,cring,angry,

sadness,and even sometimes laughing.

what is gupta going to do for this?

if this is caused by damage to the amygadala, how do you think gupta

is going to work?

it's on these bases that I think gupta is only going to help those that need

possitive reinforcement to help control their fears.

and fear can cause bodily responces, not good to let fear get the best of you.

as far as gupta helping in any way shape or form with " wiring issues "

again, maybe from the bodily reactions caused by fear but not the bodily

reactions caused by a re-exposure to a toxic chemical.

some things are bigger and badder than our own bodily defences.

>

> That is veyr interesting. With amygdala retraining, gupta keeps repeating that

this is not in your head in teh sense that you are not making it up and you are

not creating it out of a vaccuum.. it is a wiring issue that is re-inforced by

the body's own reaction. We can add to that reinforcement when we also react to

the body's reaction.

>

> Its like the body freaks out automatically and this reinforces to the

amygdala.. oh yeah.. you are so on track.. there is certainly danger here..

>

> Then the mind itself.. thoughts ..and feelings (which are also chemical in

nature thus also part of the body's response but also part of the mind's

response) also reinforces teh amygdala..

>

> yeah.. you got it right amygdala.. keep up the good work.

>

> Gutpa has you very consciously address the amygdala.

>

> Robin

[Guest guest]

You could be right about this, Sharon. I guess I just took it as showing

the complexity of the brain. Years ago on an ADHD board someone explained

how when they took the meds for their ADHD, their chemical sensitivities

went away. No one else had that same experience.

I've always wondered why there is any doubt about the validity of chemical

sensitivities when medications can have any number of horrible side

effects from a small amount of a chemical......even death.

Jean

Posted by: " snk1955@... " _snk1955@... _

(mailto:snk1955@...?Subject=

Re:%20Self-defeating%20actions%20%20[WAS:%20What%20can%20off%20gas%20and%20wh...\

) _snk1955 _ (snk1955)

Mon Aug 16, 2010 5:57 pm (PDT)

I don't think I would hold someone out who has seven different

personailities w/only one having MCS as relevant to anything one way or

the other

regarding the science behind MCS. That sounds like one of those defense

urban

legends to me, meant solely to cast doubt on the validity of MCS being

caused by an overload of chemicals in our society.

Sharon