Re: Advice: Mold Lifestyling is a Balancing Act-Part I

[Guest guest]

>>>On Behalf Of erikmoldwarrior

> Rosie wrote: You know where I'm coming from . Its tragic, breaks my

heart when I think of all these people. We have a toxic mold home across

the street. Do we sell our home and try to find a safe one and how

do I inspect the neighborhood to make sure no moldy homes that might

affect me and if one becomes moldy do I continue to move? Honestly

we don't have that kind of extra money either.

> responed: If you are asking me to use my limited resources to take

charge of your situation instead of just offering advice, I'm sorry that I

can't afford it. This illness has diminished my options considerably

and I only managed to invent a strategy of survival after waiting

too long and being forced into a lifestyle of avoidance, thanks to

all the people who delayed my actions by working so hard to convince

me that everything I claimed was false, and could be controlled

using the " Power of the mind " .

I remember students becoming frustrated at how difficult it is, and

how long it takes to learn to Hang Glide. " Can't you just fly it

for me? " Yes I could, but I can't always be there, so you're going to have

to learn to do it on your own.->>

Hi .

I'm sorry you think I'm asking you to help me personally. That never crossed

my mind. I only wrote about the moldy house across the street as an example

of how difficult and almost impossible it is for a family or even an

individual to become a nomad and flee from mold indefinitely and most of us

don't want to have such a lifestyle of having to flee. Especially those

with children, the seniors...well honestly people in general are not nomads.

Please forgive the misunderstanding.

We own our home and we don't plan to move unless major disaster or other

such crisis. I like stability, having my own home, my garden, being close

to aging family members who need us. I need room, more than an RV would

provide for my stuff, my herbal inventory, my salves and lotions and

tinctures to share with others; my husband needs space to relax after

working all day....an RV just wouldn't be practical for us and neither would

having move all the time. That's too much stress which would further

compromise my health.

I've learned avoidance is impossible unless I choose to spend my energy

running from mold and I'd still be exposed at times. I've already learned

" to fly " by doing it the hard way...one day at a time...and crashing

unfortunately but don't mind picking myself up and trying again.... and I've

also learned to use caution, avoid any known mold hazards and if surprised

I've learned what protocols to use to regain my health (same applies to

chemicals and fragrances).

As you and so many others I was misdiagnosed, there was not one physician in

my area who diagnosed toxic mold illness and I had to figure this out myself

and devise my own protocol to regain my health. I'm not cured, will never

be I don't think; however I'm functioning very well considering how ill I

was in 2001 and 2002. I do use specific foods, medicinal herbs and some

supplements as well as some hydrotherapy; learned my body needs help and

certainly is not a " mind over matter " as others have told me also. I'm

taking full responsibility for my own health and when the air currents send

the mold across the street I have my mask on; doors and windows closed

running my air purifiers and Merv 11 filters in my A/C plus showers. Plan

to order some tyvek hooded coveralls to avoid having to wash the

contaminated clothes.

Again I apologize if you thought I was asking for financial assistance from

you.

Now on to the next email addressed to you,

Rosie

FAIR USE NOTICE:

[Guest guest]

Rosie, you've described a terrific example of working to balance

your requirements against the necessities dictated by your Personal

Impact Rating.

Your PIR does not force you to act like a nomad or even evacuate

your current habitat, as it has for so many others, such as the

people in Auburn who undertook " The Flame Cure " and burned their

house to the ground with all their possessions inside, rather than

see it drive any other unususpecting potential victims into a

similar plight.

I don't think you will find anyone at all who was forced to run,

who didn't at some point think it was " impossible " and " unrealistic "

to turn your life upside down and act like a crazy person.

Just as a person who is not reactive has difficulty understanding

why anyone would bother about mold at all, it is difficult for

someone at a lesser PIR to understand the dictates of a more extreme

Impact Rating.

You have a great comprehension of the difficulties of living at PIR

4, but considerations of PIR 5 or 6 dictate far greater demands.

None of us would live like this unless we had no other choice.

-

> Hi .

I only wrote about the moldy house across the street as an example

> of how difficult and almost impossible it is for a family or even

an individual to become a nomad and flee from mold indefinitely and

most of us don't want to have such a lifestyle of having to flee.

Especially those with children, the seniors...well honestly people

in general are not nomads. Please forgive the misunderstanding.

>

> We own our home and we don't plan to move unless major disaster or

other such crisis. I like stability, having my own home, my garden,

being close to aging family members who need us. I need room, more

than an RV would provide for my stuff, my herbal inventory, my

salves and lotions and tinctures to share with others; my husband

needs space to relax after working all day....an RV just wouldn't be

practical for us and neither would having move all the time. That's

too much stress which would further compromise my health.

>

> I've learned avoidance is impossible unless I choose to spend my

energy running from mold and I'd still be exposed at times. I've

already learned " to fly " by doing it the hard way...one day at a

time...and crashing unfortunately but don't mind picking myself up

and trying again.... and I've also learned to use caution, avoid any

known mold hazards and if surprised I've learned what protocols to

use to regain my health (same applies to chemicals and fragrances).

> As you and so many others I was misdiagnosed, there was not one

physician in my area who diagnosed toxic mold illness and I had to

figure this out myself and devise my own protocol to regain my

health. I'm not cured, will never be I don't think; however I'm

functioning very well considering how ill I was in 2001 and 2002. I

do use specific foods, medicinal herbs and some supplements as well

as some hydrotherapy; learned my body needs help and certainly is

not a " mind over matter " as others have told me also. I'm taking

full responsibility for my own health and when the air currents send

the mold across the street I have my mask on; doors and windows

closed running my air purifiers and Merv 11 filters in my A/C plus

showers. Plan to order some tyvek hooded coveralls to avoid having

to wash the contaminated clothes.

> Again I apologize if you thought I was asking for financial

assistance from you.

> Now on to the next email addressed to you,

> Rosie

[Guest guest]

>>Behalf Of erikmoldwarrior

Rosie, you've described a terrific example of working to balance

your requirements against the necessities dictated by your Personal

Impact Rating.

Your PIR does not force you to act like a nomad or even evacuate

your current habitat, as it has for so many others, such as the

people in Auburn who undertook " The Flame Cure " and burned their

house to the ground with all their possessions inside, rather than

see it drive any other unususpecting potential victims into a

similar plight.>>

Hi :

Thanks again for responding. I'm enjoying and learning from our discussions

and hope others will also.

I've had to learn how to balance my requirements with my PIR. Making many

mistakes, being in denial, learning through trial and error as most of us

have. Initially in 2001-2002 I was reactive to everything; even mold on a

lemon and couldn't go to my organic vegetable co-op. I was very ill both at

home and in public. Very difficult and frustrating days and didn't

understand what had happened to my body nor my cognitive functions. Plus no

help from the local medical community. Had to figure this out myself via

cyber searches and finding this group after-the-fact.

>> I don't think you will find anyone at all who was forced to run,

who didn't at some point think it was " impossible " and " unrealistic "

to turn your life upside down and act like a crazy person.>>>

Totally agree with you and my family certainly thought I was a crazy woman

when I described my reactions; especially after I evolved to MCS also.

Course medical community labeled it " somatic " . Will send you another email

asking for your advice how to help a friend dealing with this issue with her

physician.

>> Just as a person who is not reactive has difficulty understanding

why anyone would bother about mold at all, it is difficult for

someone at a lesser PIR to understand the dictates of a more extreme

Impact Rating.>>

True just as with any disease; someone who doesn't have let's say Rheumatoid

Arthritis cannot feel the pain nor limitations that person has and hopefully

they will believe the person; often that's not the case. If the person

" looks " ok, then the world has a difficult time understanding. When I

became severely ill from the toxic mold in our home my husband had a few

" allergies " such as red eyes and runny nose. He couldn't comprehend why I

was so ill or even now if we go somewhere and I feel the mold hit and

run...he looks strange because he's not reacting. When I was in such pain I

couldn't move, when my legs gave out on me and I couldn't even crawl, when

my lungs filled with fluid and I couldn't breathe or move without agonizing

pain, when my brain went on vacation without me..yes I understand and can

relate and give empathy to those and also with those who are not as reactive

yet still warn them to take precautions to not become as I and so many have

been.

>> You have a great comprehension of the difficulties of living at PIR

4, but considerations of PIR 5 or 6 dictate far greater demands.>>>

Thank you. I believe I was much more reactive initially as explained above

and have improved my tolerance however I will not take a chance of testing

this by exposing myself on purpose.

, would you do us all a favor please and give us a detail explanation of

the PIR. Might help many on this group.

>>> None of us would live like this unless we had no other choice.>>

I totally agree and wish I could have a " normal " totally carefree life

again but I doubt that will be possible unless someone finds a cure for us.

In the meantime rather than anger or pity I have chosen to acknowledge my

illness and take whatever actions necessary to preserve my current state of

wellbeing while researching and sharing with others our illness and

attempting to improve our condition as well as fighting for those who are

unaware of toxic mold illness.

Good talking with you,

Rosie

[Guest guest]

" healthier4all " wrote:

> Hi :

> I've had to learn how to balance my requirements with my PIR.

Making many mistakes, being in denial, learning through trial and

error as most of us have. Initially in 2001-2002 I was reactive to

everything; even mold on a lemon and couldn't go to my organic

vegetable co-op. I was very ill both at home and in public. Very

difficult and frustrating days and didn't understand what had

happened to my body nor my cognitive functions. Plus no help from

the local medical community. Had to figure this out myself via

cyber searches and finding this group after-the-fact.

Isn't it amazing how we all complain of such awesome clues and the

medical establishment just doesn't see it, and refuses to talk to us?

I'd like to draw particular attention to the way you worded this:

" Initially - reactive to everything - even mold on a lemon "

It is so unbelievable to others that these words just disappear as

if they didn't exist - but this is a perfect description

of " intensification " . The " post exposure " heightened reactivity that

really catches everyone by surprise.

Those people who think they can stay in a bad place right up until

they can't take it anymore, but will be OK because once you get out -

it's all " recovery " from that point on...

Be Warned.

This is not like you think.

" Intensification " will do things to you that you never thought

possible, and the doctors will try to damp it down with Prednisone.

Which, as Dr Shoemaker says, can be devastating if someone is both

MSH and ACTH deficient - and is almost a guaranteed prescription for

MCS.

I hope that the esteemed author of the Personal Impact Rating

system will step in and repeat his posting of the scales.

Carl?

-

[Guest guest]

and group,

I'm not sure of the " esteemed " part, but as the author of Personal

Impact Rating I will repeat below that part of my post from Feb 24.

First, however, I'm just now getting caught up on my e-mail including

this discussion. (I've been out of town since Thursday and my e-mail

wouldn't download for some reason.)

Sharon, included is my opinion to your question about why reactivity

changes. Dynamic combination of susceptibility and exposure. Same as

why did someone catch the flu last week and not the week before? The

same flu " bugs " were present.

First, good news. I presented Friday at the national conference in

Savannah of the Association of Specialists in Cleaning & Restoration

(ASCR) http://www.ascr.org/

Dr Eugene Cole spoke on cleaning for the immuno-compromised. I

followed him with the topic of " Susceptible Occupants " with an

emphasis on the need for contractors and consultants to identify them

and then how to change the standard operating procedure to meet the

individual needs. There was excellent attendance, good questions

showing legitimate interest that kept me past my ending time.

As I've previously posted (the same Feb 24 post), the history of

understanding and acceptance is very slow but it is increasing.

Private conversations were extremely encouraging. However, it takes

time to " trickle down " to some in the field.

As for a " cure " I don't claim that there is one. Those of us that get

ill from exposure will continue to do so - WHEN exposed. How quickly

the impact stops depends on many factors. BUT that doesn't mean we

are helpless and should sit idlely by doing nothing while waiting for

a cure. You need to act NOW.

Nobody is going to - or can - " fix " us, so we must improve our

awareness and diligence - just like we want the contractors and

consultants I spoke to - to IMPROVE our situation. Some of us won't

improve much and we won't know until you try. Others will improve a

lot and they won't know until they try. Stopping exposure and

improving your susceptibility (health) are BOTH necessary.

Finally, the fundamental purpose of avoiding and/or reducing exposure

as much as possible is so the body can " clear " or at least be less

impacted. It's took me over 12 years to reach a point where I'm not

so reactive to exposures. In other words, it takes a bigger exposure

over a longer period of time to affect me. The impact is less and I

recover more quickly. Net result is my " clear " time is far greater

than my " impacted " time. It used to be that my " impacted " time was

almost all the time. That is how I " measure " where I am in the

process. CSM, anti-fungals, etc help a lot now but if I don't

minimize or stop my exposures with avoidance then no medicine works.

Now for the Personal Impact Rating (PIR).

PIR is a 6 point scale based on the overall impact exposures have on

your life, irrespective of what causes the problems, what type of

problems or by how much exposure.

PIR 1 - No impact. There are no absolutes but some people insist

nothing affects them. The only time that is true is when you are

dead.

PIR 2 - They recognize impact and a need to do something but they are

easily distracted. Besides, they can ignore it and it will go away.

And that what all of us should do, they insist, just ignore it. An

example for me was tooth after a filling was replaced. The gum was

sore and the tooth reacted to cold. I'd start to call the dentist but

the phone would ring or I had an appointment or I had to go out of

town. I just didn't get around to it.

PIR 3 - It can't wait, you must do something now. But it is easily

remedied and you can (fairly) quickly get back to a routine. The

routine may have changed - get rid of the mold - but you have a

routine. For my tooth, it came and went for two weeks before it got

bad enough to stop my life and I had take care of it. All it needed

was a bite adjustment and I'm back to my routine. Slight

interruption.

PIR 4 - You have no routine because you react to so many exposure

sources so strongly that you are almost always sick, recovering from

exposures or avoiding locations that have made you ill in the past.

You experience many complaints, many doctors, many diagnosis and

many treatment failures. The impact is disruptive and life altering.

The remedy is life altering. Many in this group are at this level.

PIR 5 - Disability. You are too sick to work or take care of family

let alone yourself. Financial ruin is the rule. A number on this

group are a 5.

PIR 6 - The dispossessed. They are the individuals - three or four

hundred estimated - who can get slight relief only by isolating

themselves from as many exposures as possible. They live outside in

tents or porcelan trailors, sometimes moving to high desert regions.

I've had 9 clients reach this point in the past 19 years. Some of you

have experienced this level.

I will now add that once a 3 then always at least a 3 but it could

advance to a 4, 5 or even 6 if you don't reduce exposures and your

body weakens sufficiently. Not everyone will but there is that

potential. But a 3 can live as a 2, at least most of the time. Also,

once a 6 always a 6. But through self awareness, learning a few

management practices and with increased diligence you don't have to

LIVE as a 6. Even without a cure you might be able to reduce the

" impact " to a 5 or 4 or 3 with management. Yes, CSM and other

treatments can help tremendously. But they aren't a cure for exposure

anymore than there is a cure for preventing broken bones in a car

crash.

Carl Grimes

Healthy Habitats LLC

-----

> I hope that the esteemed author of the Personal Impact Rating

> system will step in and repeat his posting of the scales.

> Carl?

> -