Re: Why doesn't anyone ever respond to my messages

[Guest guest]

same here

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[Guest guest]

, please expand on your feelings. I am sharing your feelings trying to get

some people close to me to listen about some things so I want to know what it is

I personally have apparently missed. I have gone to change.org and voted for ten

things. I believe to support what I have been hearing about here on the board

but I did only do it last night.

 

I sincerely want to here what you are feeling and what I can do to comfort you

so you dont feel like any of your efforts are in vein. You are right, this would

be against the whole reason this board is here. Please fill me/us in and thank

you for voiceing your opinion rather than just giving up first. I concider this

as a wake up call that I/we have become a little to complacent and neglecting

what we are all here for in the first place. I will look forward to read what

you have to say when I wake up. If you need to talk, I know KC is always there

and I will extend my ear and say I am willing to listen if you ever want to talk

let me know. None of your efforts will be in vein if I can help it.

 

Chris...

I have been writing here for 10 years and most of the time there is no

response. I thought this was a support group.

[Guest guest]

,

One of the things I figured out was a lot of the members want to answer and be

more supportive but we are all pretty sick still. There have been numerous

occassions where I wanted to respond but due to extreme fatigue it makes it very

hard to use that thought process of organinizing your ideas and than but them in

writing. Like now but I pushed myself to do it becuase I think your pretty

important to the group and would hate to see you not post.

What has been helpful to me is to connect with a few off line that share your

concerns and illness. The close bonds and friendships that I have with these

individulas has helped me through this horrific ordeal.

Sending you only good thoughts and prayer, Lord knows we all need it.

a

ldelp84227 <ldelp84227@...> wrote: I have been

writing here for 10 years and most of the time there is no

response.

[Guest guest]

:

Don't get discouraged. For many years I also have written and shared many

articles and resources that I though might provide productive influence to the

membership of this group with little or no response. The most important was my

" Suggestive Only, Medical Treatment Plan " that I thought might help physicians

in discussions with their patients founded on several medical processes being

medically practiced and observed as successful throughout our Country. However,

to date only three physicians are actively using it, and from each I have been

given little or no credit. The bottom line, is that I do not need or deserve

any, because the gift of sharing knowledge is not about me and/or any " kudos. "

It is about letting people know that there is a place for them to come and

realize that they are not alone in their search for human and reliable

resource-based assistance. From a movie that has had a huge impact on my life

titled, " Awakenings " (starring Robin in one of his finest roles as an

actor) DeNiro portrays a patient sent to the psychiatric facility that

has recently been employed by.

The Plot:

Dr. Malcolm Sayer is a dedicated, caring physician with some social issues who

finds it easy to grow close to his patients but difficult to connect with

others; we witness his social awkwardness early in the film when nurse Eleanor

Costello ( Kavner) invites Sayer out for a friendly cup of coffee, which he

declines with mild discomfort, much to her confusion. We see that while the two

colleagues connect easily in the professional environment, Sayer struggles with

casual social acquaintance.

After working extensively with the catatonic patients who survived the 1917-1928

epidemic of encephalitis lethargica, Sayer and Eleanor discover certain things

will reach beyond the patients' respective catatonic states; actions such as

catching a ball thrown at them, hearing specific genres of music, and

experiencing human touch all have unique effects on particular patients and

offer a glimpse into their worlds. Leonard Lowe ( DeNiro), proves elusive

in this regard, prompting Sayer to visit Leonard's mother at home to better

understand his patient. A daily visitor and caretaker for Leonard, she tells

Sayer that Leonard had been an avid reader during much of his pre-catatonic

early confinement with the encephalitis. Sayer soon discovers that by using a

Ouija board with Leonard's hands on the planchette and Sayer's hands on top,

Leonard is able to communicate. He spells out " RILKE PANTHER " , and on a hunch

Sayer heads to the local library and discovers a book of Rainer Rilke

poems, one of which is entitled " The Panther. " Sayer is more determined than

ever to find a breakthrough to help his patients return to reality.

Anyway, one statement in this movie says it all about why we do what we do in

this " Sickbuildings " group. DeNiro is discussing with a woman he meets while

visiting her non-responsive father, also a patient in the hospital. She states

to DeNiro, her frustration in visiting her father when he never is able to

respond to her communication with him, and whether or not her visits are

meaningful to him. DeNiro's response is simple, humble, but very encouraging...

" He hears you, you know. He knows you are there. " Don't give up so easily .

Your help, mine, and the dedication of many others like you and I, are being

read and appreciated by the literally thousands of victimized people who visit

the Sickbuildings group and then leave in silence, much better for the knowledge

they have received. Jesus demonstrated clearly by his life on earth, that the

purpose of life is basic to, " What have you learned about yourself... and, what

have you learned to give back naturally without attention to fame, fortune, or

personal reflections.

, thank you and all of the other unsung heros who are dedicated to this

group.

God Bless and take care.

Doug Haney

@...: ldelp84227@...: Sun, 11 Jan 2009

05:21:25 +0000Subject: [] Why doesn't anyone ever respond to my

messages

I have been writing here for 10 years and most of the time there is no response.

I thought this was a support group. I gave up sharing what I write to government

people or comments to articles. Needed help voting on the change.org. KC and a

few are very helpful but it does get discouraging after all these years and

nothing. Sorry but I am about to give up.

_________________________________________________________________

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ks_012009

[Guest guest]

, I many times just don't have the strength to respond but I do read

your postings. I honestly know how you feel, I try to talk to people I know

including family and they don't even want to listen but I keep plugging along

trying to do what I can.Many times I feel like giving up but then I think

about all the people out there that need our help. I even went to D.C. a few

years ago and met with an aide to my congressman but nothing ever came of

that!!

We took the train down, Dr. Shoemaker's research papers, his books, etc. I

thought they would do something but I never heard from them again!

I keep hoping and praying that one day someone(of great importance) will

take notice and then possibly the rest of the world will listen and then

realize what we've been trying to tell them for so long. I also get extremely

frustrated that people don't listen, they don't even want to try. I have people

in

my own family that just do not believe it.

I have tried and tried to tell them at the school where I got sick and no

one seems to care.To top it all off it is a Catholic school that is still

open. People are most likely still getting sick they just don't know why.. I

don't think a day goes by that I don't think about the children still sitting

in that moldy building. Years from now their parents will wish they had

listened but it will be too late.

There are days I want to throw in the towel but I'll keep writing and

telling anyone who will listen. I just hope they start to believe soon.

Your friend, Sue

>>

I have been writing here for 10 years and most of the time there is no

response.

[Guest guest]

I never see my messages posted. Is that what you mean? llaci

[Guest guest]

Some times a message will post right away and at other times it can

take as long as a whole day so may seem to be gone but it is just

delayed. Other times messages can be deleted if subject is not about

sbs syndrome, or can be deleted if it is just a 'thank you' or 'me too'

in order to keep the digest from getting too long. I think means

no other members responded to her message or messages. Sometimes that

happens to me and sometimes I don't respond to a group message, because

I don't know anything much about subject, or I don't think I'm best to

answer and think someone else will.

>

> I never see my messages posted. Is that what you mean? llaci

>

[Guest guest]

Your messages have been posted. Here are possibly a few reasons why

they might not be answered:

1. Length of post. I delete anything too lengthy. No time or patience

to read anything more than a sentence or 2 except for some that KC,

Jeff May, Doug, Carl or some others send from time to time.

2. Disgusting posts that some send with graphic descriptions of bodily

fluids. I put those people in my trash with my mail filter. Some of us

are squeamish and don't want to feel any worse than we do.

3. Timing. Holiday times are tough because people are busy and those

with energy are scurrying about.

4. Rich text. HTML and javascript code comes through before the

message for those of us who use " text " only option in our mail

programs.

5. When sending an article, it's best to send just the url with a

short descriptive paragraph rather than the whole thing.

6. Mail crush. Someone may have intended to answer, but by the time

they do, the volume of mail has buried your message.

I believe most of us have sent through messages we feel should be

answered promptly and they aren't answered at all. If you really want

an answer, just ask again. I don't remember what you asked for

originally. Don't give up. This is a great support group.

Barth

www.presenting.net/sbs/sbs.html

SUBMIT YOUR DOCTOR: www.presenting.net/sbs/molddoctors.html

---

l> I never see my messages posted. Is that what you mean? llaci

[Guest guest]

Dear Doug--that movie is also one of my very favorites!  I just loved it,

although I haven 't seen it in awhile.  Have you seen the movie " Something the

Lord made " ?  Its a terrific movie, & true story as well...!

 

Doug, I was wondering if you ever got ahold of my surgeon at OSU hospital?  His

name is Dr Carson III, & he wanted to talk to you, too....in fact, he

said he had tried to reach you, but he was unable.  If you're willing to speak

to him about the breast cancer issue, please email me privately, ok?

I guess I'd thought that others responded to your emails more often, Doug.  As

for me, 2008 was a VERY bad year for me health-wise, & I still have major

issues.  Just for the record, though, I just LOVE to read your intelligent and

informative responses.... & that's the truth!

 

Take GOOD care, Doug, & God bless you also, for all you do!

Sincerely,

Frohna

Don't get discouraged. For many years I also have written and shared many

articles and resources that I though might provide productive influence to the

[Guest guest]

Sorry guys for complaining. I guess a few years ago I would post

stuff I would write-- not to bragg about what I wrote-- but to help

those who might want to see what I wrote or guide those that wanted

to write but were too ill or whatever. After a while I stopped

sharing because I thought maybe people weren't interested. Then

sometimes I would post my feelings because I am so isolated to our

group or ask a question, and many times I would feel more alone

because I wouldn't get much feedback. There are several that always

write me, and you know who you are; but, I love all of you even

those I don't know. I and many of us have been here for so long and I

guess it gets hard after a while. I feel better already and I will

be stronger. I hope there will be a day that we all get to meet and

celebrate our success. You know how with this illness the depression

gets in the way, and I was a little depressed yesterday. Can't shake

this stomach flu or something I have had since xmas. Thank you guys.

I am hopeful with the new administration that change is coming. Love

to you all.

>

>

> , I many times just don't have the strength to respond but I

do read

[Guest guest]

Hope you're feeling better, . It's been a rough winter for me

too.

Barth

l> Sorry guys for complaining. I guess a few years ago I would post

l> stuff I would write-- not to bragg about what I wrote-- but to help

l> those who might want to see what I wrote or guide those that wanted

l> to write but were too ill or whatever. After a while I stopped

l> sharing because I thought maybe people weren't interested. Then

l> sometimes I would post my feelings because I am so isolated to our

l> group or ask a question, and many times I would feel more alone

l> because I wouldn't get much feedback. There are several that always

l> write me, and you know who you are; but, I love all of you even

l> those I don't know. I and many of us have been here for so long and I

l> guess it gets hard after a while. I feel better already and I will

l> be stronger. I hope there will be a day that we all get to meet and

l> celebrate our success. You know how with this illness the depression

l> gets in the way, and I was a little depressed yesterday. Can't shake

l> this stomach flu or something I have had since xmas. Thank you guys.

l> I am hopeful with the new administration that change is coming. Love

l> to you all.

l>

>>

>>

>> , I many times just don't have the strength to respond but I

l> do read

[Guest guest]

>-I am so sorry-I get lazy sometimes and don't bother to respond

to every message I find interesting. I did go to change.org and left

my message there and I thank you for the idea.

If I am the average member here then you should know that most people

read and respond to the messages but not necessarily with personal

answers. Speaking just for myself, I didn't know if it sounded stupid

to answer with a short message like " great idea, thanks. " In fact, I

feel kind of silly writing this right now.

> I have been writing here for 10 years and most of the time there is no

> response. I thought this was a support group. I gave up sharing what I

> write to government people or comments to articles. Needed help voting

> on the change.org. KC and a few are very helpful but it does get

> discouraging after all these years and nothing. Sorry but I am about to

> give up.

>

[Guest guest]

Hey Joe, I promise to stay crazy. Some days I just cry and want to give up

especially when it comes to family members but I'll keep trying. I did write

to the new show The Drs. put have never received a reply and that's what

usually happens but I'll keep trying. We all have to keep trying to educate the

public. Some day some one will take notice, I hope!

Sue

Joe wrote:

Hi Sue,

Don't give up. If you are a religious person, try to look at it this

way.

[Guest guest]

Hi Sue,

Don't give up. If you are a religious person, try to look at it this

way. We HAVE suffered, or ARE suffering, from something terrible.

Unfortunately, most of the world does not believe either our

experiences, or our warnings to them. God gives us free will to

choose our response to the world's disbelief. You can choose to give

up, and do nothing. Or you can choose to continue to spread your

personal knowledge of reality, and shout out the warnings.

My personal response, which is to continue to shout out warnings, is

influenced by the Jewish tradition of " Tikkun Olam " , which

translates into the words " to perfect and improve the world " .

I have a niece, whose home I can never enter, due to mold in her

home. It used to cause me great emotional pain, to watch her little

sons using an asthma nebulizer, to be able to breathe. Naturally,

she disregards my mold warnings, and continues to think of me

as " crazy Uncle Joe " , who is always babbling about mold.

You and I can rarely make any individual accept our medical

diagnosis of their suffering. What we can do, to improve the world,

is continue to say " crazy things " , to as many people as possible, in

the hope that, at some future time, our " crazy " ideas will create a

critical mass of concern, that will prompt scientists and medical

researchers to actually explore OUR world.

An example of what I am suggesting, is the television show " HOUSE " ,

about a hospital doctor doing all those things that REAL doctors

never do. Such a large percentage of the " HOUSE " shows, have

scripts, in which Doctor House, or his assistants, break into the

homes of the sick person they are trying to diagnose, in order to

uncover any possible environmental factor that the patient might

have been exposed to, that I am beginning to believe that the

name " HOUSE " was chosen by the show's writers, as a way to

subliminally implant the concept that environmental factors should

always be factored into any diagnosis.

As we ALL have experienced, in our REAL lives, when that concept is

suggested, by US, to our own personal doctors, they look at us with

the pity that doctors display for those patients which they have

just judged as being " insane " . My hope is, that this T.V. program is

being watched by enough doctors, and/or hospital Residents, so that,

sometime soon, things will change for the better.

So, please stay " crazy " , and please stay dedicated to the cause of

truth.

Love, " Crazy " Joe Salowitz

...............................................

[Guest guest]

Hi ,

Please don't give up. On behalf of myself, and many others who

suffer from testosterone poisoning [being male], please accept my

apology for not participating in the " support " function of our

support group. I tend to use this board as an information resource

ONLY, and I neglect the human needs of my fellow mold-sufferers.

Thank goodness for great guys like Doug Haney, who combine being

male, with being human. His review of " Awakenings " made me realize

that I personally don't feel as much emotional response to our board

members, as I DID feel, when watching that movie.

I will be more human, from now on. I value your input, on this

board. And from now on, I'm going to say it.

Love, Joe

...........................................

--- In , " ldelp84227 " <ldelp84227@...>

wrote:

>

> I have been writing here for 10 years

[Guest guest]

I enjoyed all the discussion and feel much better. Don't ever feel

stupid to write something. And Joe, I love that HOUSE show, often hear

them mention mold. Wouldn't it be great to have a doctor like House.

Also watched Oprah last week and she did have some good info last week

from what is good to eat. The spiritual show on Wednesday was good.

They spoke of a poor woman who went in to have a baby and had a C-

Section and got an infection and had to have her arms and legs cut off.

Her attitude was so inspiring. She just wanted to hurry up and get home

to take care of her baby. Thanks for all the support. Love and hugs to

all.

--- In , " surellabaer " <surellabaer@...>

wrote:

>

> --- In , " ldelp84227 " <ldelp84227@>

wrote:

> >-I am so sorry-I get lazy sometimes and don't bother to respond

[Guest guest]

What channel is the HOUSE show on?

--- In , " ldelp84227 " <ldelp84227@...>

wrote:

>

> I enjoyed all the discussion and feel much better. Don't ever feel

> stupid to write something. And Joe, I love that HOUSE show, often

hear

> them mention mold. Wouldn't it be great to have a doctor like House.

>

[Guest guest]

It comes on FOX and the USA channel. Episodes premiere on FOX and

repeat on USA.

> >

> > I enjoyed all the discussion and feel much better. Don't ever feel

> > stupid to write something. And Joe, I love that HOUSE show, often

> hear

> > them mention mold. Wouldn't it be great to have a doctor like

House.

> >

>

[Guest guest]

> > >

> > > I enjoyed all the discussion and feel much better. Don't ever feel

> > > stupid to write something. And Joe, I love that HOUSE show, often

> > hear

> > > them mention mold. Wouldn't it be great to have a doctor like

> House.

> > >

> >

>

[Guest guest]

Hey, and Doug H. I have learned much from all your posts

and please dont stop. it's just hard for me with my handicaps to

write much. this group has came a long way and changed alot. a smart

group of people brought together by a unreconized disease. a sad

reason to bring us together but here we are. a very sad reason.

our livlyhoods are being sacraficed for the sake of money and big

industry whore mongers. I pray that in 2009 people well be free from

this slavery called money and greed and start being treated as a

endangered species before it's offically declared. I'm sure some can

agree the holiday's can be a bummer,either you stay home to keep from

felling bad and miss the festivitys or you go knowing it well make

you suffer, maybe for days. so bahh bug, but glad the new year has

started and hope it's going to be a good one. I have a picture of a

stork trying to swallow a bullfrog abd the bullfrog is strangling the

stork with his feet so he cant swallow. lol's, the fight is on.

it say's " never give up "

[Guest guest]

A doctor I know was telling me the other day that doctors are under pressure

to

underdiagnose and test values that are flagged as abnormal are being changed

to say " normal " when they aren't. And other tests are being discouraged.

> > > > stupid to write something. And Joe, I love that HOUSE show, often

> > > hear

> > > > them mention mold. Wouldn't it be great to have a doctor like

> > House.

> > > >

Ha ha.. not always but yes to have one as *smart* as him...

I can totally relate to how cranky and cynical he is,

[Guest guest]

-Jeanine: Sorry you are not doing well. Were you able to tolerate the

CSM and did you get any relief from it at all? Still have that trip

on my list of possibilities. Take care. Love the stork-frog story,

has a good message... D

-- In , " who " <jeaninem660@...> wrote:

>

> Hey, and Doug H. I have learned much from all your posts

> and please dont stop.

[Guest guest]

Thanks D. it helps some but I cant tolerate takeing it like I'm

supposed too. I had to find and get it without the frutose, but I'm

takeing it slow and trying to work my way up.

>

> -Jeanine: Sorry you are not doing well. Were you able to tolerate

the

> CSM and did you get any relief from it at all? Still have that trip

> on my list of possibilities. Take care. Love the stork-frog story,

> has a good message... D

[Guest guest]

I am having trouble again taking CSM. I took some at 9 pm one night

and at 3 in the morning I was still waiting to stop blurping it up to

go to bed. Didn't want to go to sleep feeling it not settled. I

hadn't taken it for a long time so perhaps I have to get used to it

again by starting out with smaller dose. Sometimes I forget to drink

enough water with it though too.

>

> Thanks D. CSM helps some but I cant tolerate takeing it like I'm

> supposed too. I had to find and get it without the frutose, but I'm

> takeing it slow and trying to work my way up.

>

[Guest guest]

I had trouble with burping when I first started taking CSM but an OTC type

antacid will help a lot!!

Dr. Shoemaker gave me a prescription but I don't remember what it was. That

was 5 yrs. ago but I think you can get something at most drug stores that

will help. I took it 4 times a day and NEVER missed a dose! Worked for me.

Good luck and stay the course!

Sue

> I am having trouble again taking CSM. I took some at 9 pm one night

> > and at 3 in the morning I was still waiting to stop blurping it up

to

> > go to bed.

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