Re: A copy, the letter I wrote-

[Guest guest]

Thanks .  Give me some more email address ideas????   Fox???  How about

20/20 or something or Dateline???? Who else can we bombard?   You know what gets

me more than anything is that they will freely talk about anything else when it

is estimated that maybe say 2 million people are affected by it.  And those

conditions most of them are not even that serious.  OK>>>> We have stats that

say anywhere between 6 and 10 million Americans are now diagnosed with fibro. 

They Need to Wake UP and smell the damn coffee.  I am sick and tired of the

stigma.

love and hugs,

Debra V.

>

> > From: debra van ness

> > Subject: Estimated ten million Americans with this illness

> > To: vcm@...

> > Date: Sunday, May 11, 2008, 9:03 AM

> > To whom it may concern:

> >

> > I am writing not only on behalf of myself, but about 1500

> > members of my support group and approximately ten million

> > people in the U.S. alone who suffer from Fibromyalgia.

> > Please read this. Even if we don't get much news

> > coverage, if ONE person reads this and tries to understand,

> > then this letter is worth writing.

> >

> > My personal experience with Fibromyalgia began in my

> > 20's. I am now 44. I did not even pay attention in my

> > twenties because the symptoms were mild.

> > I had never even heard the word " fibromyalgia "

> > until it progressed and hit me hard at the age of 39. I am

> > an R.N. of 16 years. So this tells you that the medical

> > community as well as the general population has little

> > knowledge of this illness.

> >

> > It started with numbness and tingling in the fingertips and

> > chronic " tiredness " when I was in my twenties. I

> > went to doctors with the " always feeling tired no

> > matter how much I sleep " . I was simply told to

> > exercise more. I was young, active, and not overweight

> > then. I blew it off and thought it must be normal to feel

> > like that. I also thought I had carpal tunnel syndrome to

> > explain the numbness and tingling that would come and go in

> > my fingers.

> >

> > At the age of thirty-nine I bacame very ill. My hands

> > began to hurt and sway from tingling sensations to burning

> > pain that was severe. At the same time my knees began to

> > hurt. I had all over flu like aches and was so exhausted I

> > could hardly move. My mind was foggy with concentration and

> > memory problems. The stiffness of my whole body also

> > began. I missed several weeks of work not knowing what was

> > wrong. I thought I was dying with something fatal. I felt

> > like I was dying. Keep in mind that up until that

> > particular flare, I never had a pain which Tylenol would

> > not take care of. I would learn in about four to six weeks

> > that I have Fibromyalgia. I had NEVER read anything about

> > it but quickly learned what this disease is. I have never

> > been the same since that flare at thirty-nine years of age.

> >

> > I still work full time out of necessity. It is very

> > difficult and if not for a great physician who knows

> > Fibromyalgia is real, I would not be able to support my

> > young children. I am completely exhausted 90% of the time

> > no matter how much I sleep. I wake up every morning

> > feeling like someone has beaten me with a board and the

> > stiffness is so bad at times that I cannot get out of bed

> > without help.

> >

> > I want to say that if it is researched, you will find that

> > most of the people with this illness were once very active,

> > educated, and have or HAD highly demanding careers. Most of

> > us could not fit the stereotype of this illness which the

> > general public has given us. We are not lazy. We are not

> > hypochondriacs and we are not drug seekers and liars.

> > Though you cannot see this illness, those of us who have it

> > KNOW it is REAL.

> >

> > Please consider offering more coverage and education about

> > this. Keep in mind also that Lyrica helps some of us,

> > whereas it does not help others at all. Even though it

> > does help some of us, it is NOT a cure.

> >

> > Thank you,

> > Sincerely,

> > Debra Van Ness R.N.

> >

> >

> >

> >

> >

____________ _________ _________ _________ _________ _________ _

> > Be a better friend, newshound, and

> > know-it-all with Yahoo! Mobile. Try it now.

> > http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ

>

>

>

____________ _________ _________ _________ _________ _________ _

> Be a better friend, newshound, and

> know-it-all with Yahoo! Mobile. Try it now.

http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ

>

________________________________________________________________________________\

____

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Do you get " Harvey " on your local radio stations? He has , I'm

not sure but I think, like a 15 min segment here..and I think he does

other stations as well. That may be something I try to hit tomorrow.

Altho tomorrow is awareness day, I am gonna stay with this mission,

until I just run out of ideas..And yes..any of those " news " (as they

call themselves), shows..Local TV, that has some affiliate

broadcasts..MSNBC--is a thought. Any and all health broadcasts that

you can find or think of. When my brain is working better, I will

make a list of them, but right now, I just cannot bring myself to

think clearly. Let us know the ones you come up with as well.

Maybe even write some of the TV shows themselves, ER..and I know there

are more.

Anyway, I'm gonna try for an hour nap-please forgive me for this thick

as hell fog I seem to be in. I'm not sure if it is the weather, but

our winds have been 25mph constant with gusts up to 51 today..with

ugly clouds. No rain, but sometimes, this is just as rough.

Started out beautiful. Went to church ..late lunch..was nice..then

all this started happening..and now I am useless.

Hugs,

T

> Good Luck to all of us on this mission, and God Bless each and every

> one of us that suffer with this monster!

> ~

>

> -- In Fibromyalgia_ Support_Group@ yahoogroups. com, debra van ness

> wrote:

> >

> >

> >

> >

> >

> >

> > > From: debra van ness

> > > Subject: Estimated ten million Americans with this illness

> > > To: vcm@

> > > Date: Sunday, May 11, 2008, 9:03 AM

> > > To whom it may concern:

> > >

> > > I am writing not only on behalf of myself, but about 1500

> > > members of my support group and approximately ten million

> > > people in the U.S. alone who suffer from Fibromyalgia.

> > > Please read this. Even if we don't get much news

> > > coverage, if ONE person reads this and tries to understand,

> > > then this letter is worth writing.

> > >

> > > My personal experience with Fibromyalgia began in my

> > > 20's. I am now 44. I did not even pay attention in my

> > > twenties because the symptoms were mild.

> > > I had never even heard the word " fibromyalgia "

> > > until it progressed and hit me hard at the age of 39. I am

> > > an R.N. of 16 years. So this tells you that the medical

> > > community as well as the general population has little

> > > knowledge of this illness.

> > >

> > > It started with numbness and tingling in the fingertips and

> > > chronic " tiredness " when I was in my twenties. I

> > > went to doctors with the " always feeling tired no

> > > matter how much I sleep " . I was simply told to

> > > exercise more. I was young, active, and not overweight

> > > then. I blew it off and thought it must be normal to feel

> > > like that. I also thought I had carpal tunnel syndrome to

> > > explain the numbness and tingling that would come and go in

> > > my fingers.

> > >

> > > At the age of thirty-nine I bacame very ill. My hands

> > > began to hurt and sway from tingling sensations to burning

> > > pain that was severe. At the same time my knees began to

> > > hurt. I had all over flu like aches and was so exhausted I

> > > could hardly move. My mind was foggy with concentration and

> > > memory problems. The stiffness of my whole body also

> > > began. I missed several weeks of work not knowing what was

> > > wrong. I thought I was dying with something fatal. I felt

> > > like I was dying. Keep in mind that up until that

> > > particular flare, I never had a pain which Tylenol would

> > > not take care of. I would learn in about four to six weeks

> > > that I have Fibromyalgia. I had NEVER read anything about

> > > it but quickly learned what this disease is. I have never

> > > been the same since that flare at thirty-nine years of age.

> > >

> > > I still work full time out of necessity. It is very

> > > difficult and if not for a great physician who knows

> > > Fibromyalgia is real, I would not be able to support my

> > > young children. I am completely exhausted 90% of the time

> > > no matter how much I sleep. I wake up every morning

> > > feeling like someone has beaten me with a board and the

> > > stiffness is so bad at times that I cannot get out of bed

> > > without help.

> > >

> > > I want to say that if it is researched, you will find that

> > > most of the people with this illness were once very active,

> > > educated, and have or HAD highly demanding careers. Most of

> > > us could not fit the stereotype of this illness which the

> > > general public has given us. We are not lazy. We are not

> > > hypochondriacs and we are not drug seekers and liars.

> > > Though you cannot see this illness, those of us who have it

> > > KNOW it is REAL.

> > >

> > > Please consider offering more coverage and education about

> > > this. Keep in mind also that Lyrica helps some of us,

> > > whereas it does not help others at all. Even though it

> > > does help some of us, it is NOT a cure.

> > >

> > > Thank you,

> > > Sincerely,

> > > Debra Van Ness R.N.

> > >

> > >

> > >

> > >

> > >

> ____________ _________ _________ _________ _________ _________ _

> > > Be a better friend, newshound, and

> > > know-it-all with Yahoo! Mobile. Try it now.

> > > http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ

> >

> >

> >

> ____________ _________ _________ _________ _________ _________ _

> > Be a better friend, newshound, and

> > know-it-all with Yahoo! Mobile. Try it now.

> http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ

> >

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

________________________________________________________________________________\

____

> Be a better friend, newshound, and

> know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

[Guest guest]

Debra,

Here are some National Media List of Email Addresses:

http://www.commongroundcommonsense.org/forums/lofiversion/index.php/t308

57.html

http://www.freerepublic.com/focus/f-news/1228326/posts

This website has details on how to place an op-ed or letter to the

editor in the top 100+ newspapers in the United States by circulation

http://www.ccmc.org/oped.htm

[Guest guest]

I am never where I can hear Harvey these days, but I do know one

of the local stations has his short, fast news segment. Here he is

on around 12:30pm or so. And I know that I do trust him to bring you

topics that other media outlets DO NOT talk about.

Will see if I can find info on how to contact him! Can't believe he

is still broadcasting !

> > >

> > > > From: debra van ness

> > > > Subject: Estimated ten million Americans with this illness

> > > > To: vcm@

> > > > Date: Sunday, May 11, 2008, 9:03 AM

> > > > To whom it may concern:

> > > >

> > > > I am writing not only on behalf of myself, but about 1500

> > > > members of my support group and approximately ten million

> > > > people in the U.S. alone who suffer from Fibromyalgia.

> > > > Please read this. Even if we don't get much news

> > > > coverage, if ONE person reads this and tries to understand,

> > > > then this letter is worth writing.

> > > >

> > > > My personal experience with Fibromyalgia began in my

> > > > 20's. I am now 44. I did not even pay attention in my

> > > > twenties because the symptoms were mild.

> > > > I had never even heard the word " fibromyalgia "

> > > > until it progressed and hit me hard at the age of 39. I am

> > > > an R.N. of 16 years. So this tells you that the medical

> > > > community as well as the general population has little

> > > > knowledge of this illness.

> > > >

> > > > It started with numbness and tingling in the fingertips and

> > > > chronic " tiredness " when I was in my twenties. I

> > > > went to doctors with the " always feeling tired no

> > > > matter how much I sleep " . I was simply told to

> > > > exercise more. I was young, active, and not overweight

> > > > then. I blew it off and thought it must be normal to feel

> > > > like that. I also thought I had carpal tunnel syndrome to

> > > > explain the numbness and tingling that would come and go in

> > > > my fingers.

> > > >

> > > > At the age of thirty-nine I bacame very ill. My hands

> > > > began to hurt and sway from tingling sensations to burning

> > > > pain that was severe. At the same time my knees began to

> > > > hurt. I had all over flu like aches and was so exhausted I

> > > > could hardly move. My mind was foggy with concentration and

> > > > memory problems. The stiffness of my whole body also

> > > > began. I missed several weeks of work not knowing what was

> > > > wrong. I thought I was dying with something fatal. I felt

> > > > like I was dying. Keep in mind that up until that

> > > > particular flare, I never had a pain which Tylenol would

> > > > not take care of. I would learn in about four to six weeks

> > > > that I have Fibromyalgia. I had NEVER read anything about

> > > > it but quickly learned what this disease is. I have never

> > > > been the same since that flare at thirty-nine years of age.

> > > >

> > > > I still work full time out of necessity. It is very

> > > > difficult and if not for a great physician who knows

> > > > Fibromyalgia is real, I would not be able to support my

> > > > young children. I am completely exhausted 90% of the time

> > > > no matter how much I sleep. I wake up every morning

> > > > feeling like someone has beaten me with a board and the

> > > > stiffness is so bad at times that I cannot get out of bed

> > > > without help.

> > > >

> > > > I want to say that if it is researched, you will find that

> > > > most of the people with this illness were once very active,

> > > > educated, and have or HAD highly demanding careers. Most of

> > > > us could not fit the stereotype of this illness which the

> > > > general public has given us. We are not lazy. We are not

> > > > hypochondriacs and we are not drug seekers and liars.

> > > > Though you cannot see this illness, those of us who have it

> > > > KNOW it is REAL.

> > > >

> > > > Please consider offering more coverage and education about

> > > > this. Keep in mind also that Lyrica helps some of us,

> > > > whereas it does not help others at all. Even though it

> > > > does help some of us, it is NOT a cure.

> > > >

> > > > Thank you,

> > > > Sincerely,

> > > > Debra Van Ness R.N.

> > > >

> > > >

> > > >

> > > >

> > > >

> > ____________ _________ _________ _________ _________ _________ _

> > > > Be a better friend, newshound, and

> > > > know-it-all with Yahoo! Mobile. Try it now.

> > > > http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ

> > >

> > >

> > >

> > ____________ _________ _________ _________ _________ _________ _

> > > Be a better friend, newshound, and

> > > know-it-all with Yahoo! Mobile. Try it now.

> > http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ

> > >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

>

______________________________________________________________________

______________

> > Be a better friend, newshound, and

> > know-it-all with Yahoo! Mobile. Try it now.

> http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

> >

>