Re: a disease of the well to do?

[Guest guest]

IN my ten years of clinical practice, I have not observed any

relationship between personal economic status and this condition.

I believe we have here a physiological situation, with hyperactive

and over responsive central nervous system cells, and as time passes,

yes, we do develop coping, thinking, feeling, behavioral responses to

this very pervasive and invasive condition.

If 4S could be 'fixed' by psychology or psychiatry, we would have

some concrete results somewhere to study and discuss.

What I hear from people is, I have been shamed by others for my

condition, I have been blocked, misunderstood, reviled, abused,

ignored, tortured, tolerated, distanced, and

disregarded............by my family, co workers, friends, lovers,

children, relatives, strangers, and worse of all, my medical advisors.

My two cents ( I am not well to do : )

Marsha JOhnson, MS

[Guest guest]

So you own a computer, you are a practicing physician, I would guess

you are well nourished, have access to health care, and are not in

fear for your life on a moment to moment basis and you still think

you're not well to do???

>

> IN my ten years of clinical practice, I have not observed any

> relationship between personal economic status and this condition.

>

> I believe we have here a physiological situation, with hyperactive

> and over responsive central nervous system cells, and as time passes,

> yes, we do develop coping, thinking, feeling, behavioral responses to

> this very pervasive and invasive condition.

>

> If 4S could be 'fixed' by psychology or psychiatry, we would have

> some concrete results somewhere to study and discuss.

>

> What I hear from people is, I have been shamed by others for my

> condition, I have been blocked, misunderstood, reviled, abused,

> ignored, tortured, tolerated, distanced, and

> disregarded............by my family, co workers, friends, lovers,

> children, relatives, strangers, and worse of all, my medical advisors.

>

> My two cents ( I am not well to do : )

>

>

> Marsha JOhnson, MS

>

[Guest guest]

What??? This response makes no sense!! What Marsha said was that this disease seems to transcend all economic levels. How does it relate to her being "well to do?"

What she said was very true and very well put.

Kathy Howe

-----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of rockypandoraSent: Monday, July 17, 2006 8:22 AMTo: Soundsensitivity Subject: Re: a disease of the well to do?

So you own a computer, you are a practicing physician, I would guessyou are well nourished, have access to health care, and are not infear for your life on a moment to moment basis and you still thinkyou're not well to do???>> IN my ten years of clinical practice, I have not observed any > relationship between personal economic status and this condition.> > I believe we have here a physiological situation, with hyperactive > and over responsive central nervous system cells, and as time passes, > yes, we do develop coping, thinking, feeling, behavioral responses to > this very pervasive and invasive condition.> > If 4S could be 'fixed' by psychology or psychiatry, we would have > some concrete results somewhere to study and discuss.> > What I hear from people is, I have been shamed by others for my > condition, I have been blocked, misunderstood, reviled, abused, > ignored, tortured, tolerated, distanced, and > disregarded............by my family, co workers, friends, lovers, > children, relatives, strangers, and worse of all, my medical advisors.> > My two cents ( I am not well to do : ) > > > Marsha JOhnson, MS>

[Guest guest]

Also, as far as the question about people in 3rd world countries having SSS--many probably do, and are probably being ostrasized just like the sufferers are in the "well to do" countries. They just don't have the internet to connect with other sufferers.

The only reason they might not have SSS in those countries is possibly due to the fact that they don't get immunized up the wazoo like our kids do. Who knows what all those shots do...autism seems likely. And since autism has a lot of sound sensitivity issues, it seems plausible that SSS sufferers may have reacted to the immunizations in a milder way than full on autistic people.

Just my thoughts...

Kathy Howe

-----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of Kathy HoweSent: Monday, July 17, 2006 9:04 AMTo: Soundsensitivity Subject: RE: Re: a disease of the well to do?

What??? This response makes no sense!! What Marsha said was that this disease seems to transcend all economic levels. How does it relate to her being "well to do?"

What she said was very true and very well put.

Kathy Howe

-----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of rockypandoraSent: Monday, July 17, 2006 8:22 AMTo: Soundsensitivity Subject: Re: a disease of the well to do?

So you own a computer, you are a practicing physician, I would guessyou are well nourished, have access to health care, and are not infear for your life on a moment to moment basis and you still thinkyou're not well to do???>> IN my ten years of clinical practice, I have not observed any > relationship between personal economic status and this condition.> > I believe we have here a physiological situation, with hyperactive > and over responsive central nervous system cells, and as time passes, > yes, we do develop coping, thinking, feeling, behavioral responses to > this very pervasive and invasive condition.> > If 4S could be 'fixed' by psychology or psychiatry, we would have > some concrete results somewhere to study and discuss.> > What I hear from people is, I have been shamed by others for my > condition, I have been blocked, misunderstood, reviled, abused, > ignored, tortured, tolerated, distanced, and > disregarded............by my family, co workers, friends, lovers, > children, relatives, strangers, and worse of all, my medical advisors.> > My two cents ( I am not well to do : ) > > > Marsha JOhnson, MS>

[Guest guest]

There are two points here: 1) A hypothesis that if we have the

" luxury " of meeting our most basic needs, do we as humans then have

the wherewithal to address the next level of needs, i.e. mental health

issues. Therefore, as Americans, who are abundantly weatlthy, are we

more likely to be subject to (or made more aware of) mental health

issues such as depression or add. I have been wondering why our

country is so overwhelmed with syndromes.

and 2)the point that we are a wealthy nation. I was taking for

..granted that people understood that. When I say wealthy, I mean able

to manage our basic needs. You may not see that as wealthy, but if

you were to travel around the world, you would get a very different

picture. Marsha may have dealt with people from different economic

brackets, but I'm talking about people who are not even in a bracket.

Neil pointed out that he couldn't imagine a starving person being

annoyed by the person next to him slurping gruel. Does that make it

any clearer?

I AM NOT IMPLYING THAT WE DON'T HAVE A LEGITIMATE, COMPLETELY PHYSICAL

PROBLEM. I AM ONLY SPECULATING ON A LARGER LEVEL ABOUT WHY OUR

COUNTRY SEEMS SO ABUNDANTLY UNHEALTHY IN SPITE OF OUR RESOURCES.

No wonder 4S sufferers get ridiculed and degraded. If we don't have

the capacity to look at ourselves objectively, how can we help

ourselves? If we are so busy defending our right to be ill, and

arguing that we are completely at the mercy of our physiology, we will

not be successful in understanding this problem. Let's say that it is

proven without a doubt that this is a physiological problem. My point

is that it still affects us emotionally, we still have to deal with

all the outfall from it, we are still distanced from our loved ones by

it. There are consequences to be dealt with that often reflect our

own inclinations toward self-preservation. And every person in the

world has coping mechanisms, I'm not saying we're better or worse than

they are, but we do set ourselves up to be ridiculed if we are not

brave enough to admit that.

> >

> > IN my ten years of clinical practice, I have not observed any

> > relationship between personal economic status and this condition.

> >

> > I believe we have here a physiological situation, with hyperactive

> > and over responsive central nervous system cells, and as time

passes,

> > yes, we do develop coping, thinking, feeling, behavioral

responses to

> > this very pervasive and invasive condition.

> >

> > If 4S could be 'fixed' by psychology or psychiatry, we would have

> > some concrete results somewhere to study and discuss.

> >

> > What I hear from people is, I have been shamed by others for my

> > condition, I have been blocked, misunderstood, reviled, abused,

> > ignored, tortured, tolerated, distanced, and

> > disregarded............by my family, co workers, friends, lovers,

> > children, relatives, strangers, and worse of all, my medical

advisors.

> >

> > My two cents ( I am not well to do : )

> >

> >

> > Marsha JOhnson, MS

> >

>

[Guest guest]

I lived in Germany for a couple of years and worked in a montessory school.

One little boy would come there and hold his ears and tell me over and over

how it was too loud there. This young boy of 4 was from England attending an

english speaking " kindergarten " . I took him outside everyday so the noises

from the other children would not bother him. NOW I know he has what we

have.

Last weekend in Jersey I met a 3 year old at my friend's pool and the new

parents were telling us funny stories about how clean he has to have

everything. It sounded so cute but I am afraid the child is showing major

signs of OCD, the cleaning kind. If he gets a bit of sand on his hands he

starts crying, he tells his mother to clean the table all the time.

Everything has to be clean or he freaks out.

On another note, BOSE has newer smaller noise cancelling headphones.

I swear by these things!!

pia

>

>Reply-To: Soundsensitivity

>To: <Soundsensitivity >

>Subject: RE: Re: a disease of the well to do?

>Date: Mon, 17 Jul 2006 09:44:50 -0400

>

>Also, as far as the question about people in 3rd world countries having

>SSS--many probably do, and are probably being ostrasized just like the

>sufferers are in the " well to do " countries. They just don't have the

>internet to connect with other sufferers.

>

>The only reason they might not have SSS in those countries is possibly due

>to the fact that they don't get immunized up the wazoo like our kids do.

>Who knows what all those shots do...autism seems likely. And since autism

>has a lot of sound sensitivity issues, it seems plausible that SSS

>sufferers

>may have reacted to the immunizations in a milder way than full on autistic

>people.

>

>Just my thoughts...

>

>Kathy Howe

>

> Re: a disease of the well to do?

>

>

> So you own a computer, you are a practicing physician, I would guess

> you are well nourished, have access to health care, and are not in

> fear for your life on a moment to moment basis and you still think

> you're not well to do???

>

>

> >

> > IN my ten years of clinical practice, I have not observed any

> > relationship between personal economic status and this condition.

> >

> > I believe we have here a physiological situation, with hyperactive

> > and over responsive central nervous system cells, and as time

>passes,

> > yes, we do develop coping, thinking, feeling, behavioral responses

>to

> > this very pervasive and invasive condition.

> >

> > If 4S could be 'fixed' by psychology or psychiatry, we would have

> > some concrete results somewhere to study and discuss.

> >

> > What I hear from people is, I have been shamed by others for my

> > condition, I have been blocked, misunderstood, reviled, abused,

> > ignored, tortured, tolerated, distanced, and

> > disregarded............by my family, co workers, friends, lovers,

> > children, relatives, strangers, and worse of all, my medical

>advisors.

> >

> > My two cents ( I am not well to do : )

> >

> >

> > Marsha JOhnson, MS

> >

>

>

>

>

>

[Guest guest]

Probably too well 'nourished' but also I do not suffer from a variety

of well-to-do diseases, yet, either.

What makes you connect these aspects of our advanced industrial state

of being with having 4 S? Do you think that if we were extremely

impoverished living in survival state that it would be different?

Do you believe this is an imaginary illness, a functional condition,

related to hysteria?

That sets us back over 100 years, when MDs were certain that all

mental illness stemmed from repressed sexual longings for one's

parent?

Is that where we are, in the dark ages?

MJ

> >

> > IN my ten years of clinical practice, I have not observed any

> > relationship between personal economic status and this condition.

> >

> > I believe we have here a physiological situation, with

hyperactive

> > and over responsive central nervous system cells, and as time

passes,

> > yes, we do develop coping, thinking, feeling, behavioral

responses to

> > this very pervasive and invasive condition.

> >

> > If 4S could be 'fixed' by psychology or psychiatry, we would have

> > some concrete results somewhere to study and discuss.

> >

> > What I hear from people is, I have been shamed by others for my

> > condition, I have been blocked, misunderstood, reviled, abused,

> > ignored, tortured, tolerated, distanced, and

> > disregarded............by my family, co workers, friends, lovers,

> > children, relatives, strangers, and worse of all, my medical

advisors.

> >

> > My two cents ( I am not well to do : )

> >

> >

> > Marsha JOhnson, MS

> >

>

[Guest guest]

Rocky to take your analogy further, if the blood were running from a

severed artery in an arm or leg, we probably would be quite a bit less

aware of most things around us in the physical world.

Interesting questions arise, this is a good discussion point here, so

here is a question for everyone!

Under which circumstances, say extreme ones, have you noticed that you

are disconnected to your 4S symptoms?

Marsha

PS I am not a physician btw I am an audiologist, enrolled in a

doctoral program, however, so SOON I can call myself Dr.

....soon soon soon......: )

[Guest guest]

huh, I don't know if yahoo is delivering all the messages to me -somehow I missed this before...anyway, I don't think it's a disease of the well to do. I'm sure that people all over the world in vast arrays of conditions have our problem. I myself grew up for the most part of my childhood in "3rd world" conditions - On a large hippy commune where everyone had to take a vow of poverty to live there and give up all personal possions and we only ate what we grew - there was a few thousand people with like 5 familys to a household so all us kids were like little vultures with any food that wasn't oatmeal...when I first got my hearing chewing sounds problem at age 5 I was on the "skinny kid list" (-that meant sometimes we'd something extra once in a while if we were lucky -like a banana)....and we lived in a bus with no electricity and wore tire sandals made by a guatamalan man named ...there were no toliets (we had outhouses) and we had to

build fires to heat water........anyways - I didn't see packaged food til after 8 years old. When I got my hearing chewing problem, food was a super hot, VERY special comodity!

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

I remember several years ago when I heard about Janet dealing

with depression. My details are fuzzy, but I seem to remember

reading that she had taken a few years " off " to deal with her

issues. I think she took two years off of work to go into the desert

and do some soul searching.

I remember thinking, well suuuuure, wouldn't it be nice if ALL of us

could take a few years off whenever we are depressed! Unfortunately,

I have to work a traditional full time job 40 hours a week. I don't

have the luxury of having that kind of wealth so that I can just take

off for even two weeks to deal with my issues. I have to GO TO WORK

and be depressed, UGH.

Just because I still manage to go to work most days and pay my bills

doesn't mean I don't suffer from depression and/or sound

sensitivity. It just means I have to go to work AND deal with these

other things. I'm sure people who are much poorer than me may suffer

from depression, sound sensitivity, indigestion, or WHATEVER. Just

because they don't have money or health insurance or a roof over

their heads (or a VOICE) doesn't mean they don't have these same

health issues. I think it just means that they may not have

the " luxury " of being able to address those issues because they are

busy trying to keep their heads above water. You have to prioritize,

you know. Gee, it must be fun to be them.

It's a little like saying that people in poor countries don't suffer

as much from AIDS as they do in wealthier countries, because A) they

don't talk about the disease in that country, and they can't

afford the medication anyway. So I suppose they just do the best

they can to feed their children until they die. I guess they must

not suffer as much because they don't have the resources that some

other people do.

(Oh, GOD, it's time for crinkly bag/crunchy snack time for my boss in

the next cube. It's hard being me! Time for the noise maker and

headphones. And YES, I feel very lucky to have a job, and work in a

place that even tolerates headphones and noisemakers.)

[Guest guest]

Rocky,

Interesting assumptions you make about 3rd world countries and the

people who live in them, as well as physicians and their income, and

assumptions of the " well-to-do " .

I now live in a 3rd world country becdause of the lack of

accommodation, denial of access to services/treatment for the last 3

years in my own. (just as an aside, your question, how many people

in 3 world countries have no difficulty with SSSS or hyperacusis. In

the first place, you assume they " eat " . Secondly, you are not aware

of the difference in construction of buildings - which makes a very

big difference in acoustics, etc.).

By your standard, I may fall into the category of " well-to-do " - at

least my family did at one point and that is my heritage, if you will.

http://www.glanmore.org/glanmoreind.html.

My family had no " money " - that's why the house was sold. I was a

single-parent with a disabled child, daycare supplements,

everything. I managed until my hearing got intolerable. It, as

well, cost me a marriage.

Up until the time I got a formal diagnosis of hyperacusis/SSSS

(vestibular), I was making over 30,000 a year. Once I could no

longer function in a hospital/office environment - during which I

worked for leading physicians in teaching hospitals and loved), I

entered into a government self-employment program, which was perfect

for me. I subsequently received permission to transfer that program

from one province to another and made irrevocable decisions to do

so. One week before I was to move, with all tickets nonrefundable,

my things in transit somewhere in the middle of Canada or already in

British Columbia, I received a phone call from the Program Manager of

the Self-Employment Program, Human Skills and Resources Development

Canada, Vancouver office, saying I had not got " her " permission, that

she was not going to approve the transfer, etc. When I told her that

her very own staff had told me that I there was no-one else I needed

to contact re: permissions to transfer, she advised me that she was

not responsible for what her staff said. When I told her that I was

no longer capable of even registereing with an agency becuase of the

SSSS / hyperacusis, her very words were " if you can't work

like " normal " people, go on Welfare " . When I asked her if she had

seen my file, she said she didn't need to. Her _medical_ (NOT)

opinion was based on a sick benefits document - which I had been -

for thyroid nodules and, according to her _medical_ (NOT) opinion,

people with thyroid nodules do not have hearing sensistivy, ergo, I

must be lying. When I told her that I would bankrupt, and never be

able to recover, that was not her problem. When I told her that I

would lose all assets ref my mother's art, she did not know

what " art " was. Regardless, according to her, all of it

was " irrelevant " . Much of this has to do with federal/provincial

cost sharing agreements - and easy thing to hide behind and many

disabled people do not have accdess to programs because of it. For

example, if there is a program in one province that is the " only "

program that will help you - be it a provincial or federal program -

and you have a disability, and live in another? As a disabled

person? you have no access to that program. Rather, the government

would rather see you on Welfare - it is as simple as that. Canadian

Disabilities ASsociation has beenb attempting to address this for

years. This Program Manager in Vancouver, Lynn Grears, had not seen

my file, did not care to and did not want to. I, to do this day,

believe that her decision was based, in part, on the fact that her

own staff did not tell me that she existed with respect to contacting

her for permission. The program was/is " federal " .

So, I arrive in British Columbia - with " nothing " to look forward to -

no hope - bankrupt (the Program Manager's decision probably cost me

about $250,000 in assets and my credit rating went from R1's to R9's

in 5 months. All my balance prpotection was denied based on the

false information that was given to them by Human Skills and

Resources Development Canada - documented, btw.)

That decision that was made by that woman pretty much put paid on my

ability to ever work in any meaningful way again. I filed a Human

Rights Complaint 2004-0487 based on her comment that " if I could not

hear like " normal " people, I should just go on Welfare or, if I was

too _arrogant_ to do so, I could live on the street " .

Human Rights Commission supported her stating, in the end, that my

disability was irrelevant to the legislation.

During all of this, I cracked up. In point of fact, it is documented

that the crisis event was the phone call I received from Ms. Grears.

I was put on Canada Pension for the adverse effects of it - clinical

depression, anxieity disorder, dysthmia, consequent to my

government's decision leading to my bankruptcy. At the same time,

provincially, I have been denied all access to services or treatment

(TRT). While my psychiayrist, was correct, he also (and I have a

copy of my clinical records) stated in my file that I

make " allegations " of sexual misconduct against physicians, which is

not true. In Ontario, many years ago, I was assaulted by a locum (as

were two other women). This went before the Royal College in

Toronto and this individual lost is license to practice.

Subsequently, I filed criminal charges of sexual assault and he pled

guilty in a Court of Law. At what point did this become

an " allegation " as stated by this psychiatrist in Maple Ridge, BC -

who was not intrested in seeing the documentation surrounding the

case. This, Sir, means that I will never be able to see a Doctofr

again who will not " think " , based on that note, that I make false

allegations against Doctors. As well, in my chart,

this " psychiatrist " has stated that my mnother was not married when I

was born and that my father is my step-father. I have a copy of my

original birth certificate. My father, a physician, signed my birth

certificate. My parents were married in 1948. I was born in 1952.

You do the math.

Social Serivces in BC. The assumption by Sally Young was that I

moved to BC to go on Welfare. I recall once I hadn't eaten for 2

weeks or so - oyher than pasta - and when I was runnin gout of that?

I went for emer4gency food money. I couldn't wait in line - I have

medical letters saying that I " vcan't " be in closed environments and

tolerate it). This " woman " told me to come back on Friday for a

cheque for food money. When I showed up, she smiled and said.. go

fix your application. She would not tell me why.. saying " YOu know

what's wrong.. " . Well, I didn't, and for 6 months could not find

out " why " . Finally, after contacting an MLA, he advised me that,

according to _her_, I had not reported a bank account. In point of

fact, I had " closed " the bank account prior to even going into that

office - that a grand balance of $50.00 US btw, and have a letter

stating that it was a bank error. When she would not tell me " why "

she was denying me food money, I went into a panic attack and

said, " For all the help I am getting from you people, I might as well

go homne and shoot myslef " (which is a slang expression) and walked

out. Immediately on leaving that office, I thought to myself -

" Well, that was a stupid thing to say.. " and fully expected police,

ambulances, the whole thing at my apartment when I got home. Because

I assumed that she would have had to have a duty to report someone at

risk of doing harm to themselves. What I found when I got home, was

a phone message (that I saved) in which Ms. Young states, " We are

very worried that you're going to kill yourself. It is Friday

afternoon. We'll call you on Monday and if you don't answer the

phone, we'll have to call the RCMP. " Nice of her to give me the

weekend to kill myself, wasn't it? That is the standard of care in

BC. Shortly before I left Canada, I tried one last time to fix

things so I could get treatment, support systems, so I could work

and " not " be on CPP or have to deal with abusive people like Sally

Young. I spoke with a " woman " by the name of Anne in the

Minister's office who advised me that she would not discuss my case

with " me " . A few days later, I received a call from someone stating

that she was the Supervisor from the Social Offices in Maple Ridge,

BC in which she said that that office had never hreard of me. If

they never heard of me, why is Sally Young - her staff at that

office - leaving me telephone messages..

What I know is that, when I entered on to the Self-EMployment Program

because of my disability, I submitted " one " medical letter from my

Doctor that states Please accommodate for hyperacusis.

According to a this psychiatrist, who states that my mother was

unwed, that I make " allegations " against physicians, I also have

apersonality disorder. What I remember is that he wanted me to just

take more and more medication with no treatment. He would tell me,

see you in a month or so, then get angry because I didn't come to see

him every two weeks or so..

Human Rights Commission " Senior Investigator " , changed all of the

adverse effects of this process into " pre-existing conditions " .

There was major construction goinbg on in my apartment building in

Maple Ridge. Jackhammers against my walls, etc. I couldn;t live

there. I was told that there was no accommodation with respect to

what I need in housing, so my otpion (and yes, I have been cvampi ng

before and have a tent) that I could live in a tent. This is

lifestyle option that is presented by the BC government.

I am a refugee to a 3rd world country (I guess by the standards of

many). Right now, I could survive in Canada and cannot ever see a

Doctor there again - a pscyhiatrist. That note that the psychiatrist

I had about false allegations is much too prejudicial.. anbd

it's " lie " .

Imagine being raped, going through the medical and legal process -

which isn't easy for " anyone " and then have some " putz " doctor put on

your chart that you mnake " allegations " .

I agine a government hat says if you are disabled and can't work

like " normal " people, live on the street..

and Yes, my family was " privileged " .

Have a nice day.

> >

> > IN my ten years of clinical practice, I have not observed any

> > relationship between personal economic status and this condition.

> >

> > I believe we have here a physiological situation, with

hyperactive

> > and over responsive central nervous system cells, and as time

passes,

> > yes, we do develop coping, thinking, feeling, behavioral

responses to

> > this very pervasive and invasive condition.

> >

> > If 4S could be 'fixed' by psychology or psychiatry, we would have

> > some concrete results somewhere to study and discuss.

> >

> > What I hear from people is, I have been shamed by others for my

> > condition, I have been blocked, misunderstood, reviled, abused,

> > ignored, tortured, tolerated, distanced, and

> > disregarded............by my family, co workers, friends, lovers,

> > children, relatives, strangers, and worse of all, my medical

advisors.

> >

> > My two cents ( I am not well to do : )

> >

> >

> > Marsha JOhnson, MS

> >

>