Re: A copy, the letter I wrote CNN today/ what about a book.

[Guest guest]

Well done Debra!

I've been watching and reading about all the things you've been

doing. Very good. More people do need to be aware of FM. Now here's a

thought and I'm not making light of anything you are doing. But why

not write a book? About all of us. We could all pitch in. We could

all seek info from our own docs just to show all the different meds

and opinions we have to deal with.

Say start with the million and one things that may be the cause of.

Going on to the million and one treatments. How everyone feels

differently and how we cope. How people refuse to beleive or roll

their eyes at us. How some of us never feel great, some of us seem to

feel better. Some of us have the fog and some don't. How it may never

go away but we keep plugging on. How people think that because we

don't flop around like fish out of water that we must not be in pain.

OK I'm starting to get annoyed.

But once it is a best seller we could use the first procedes to go on

a cruise and meet each other!

Ok maybe I'm being a little wimsicsl but I might know someone that

could help with editing and finding a publisher.

You sound like an organised writer, Deb. I'd be glad to help out.

Think about it.

Jan

> >

> > > 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.

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> >

> >

> >

>

______________________________________________________________________

______________

> > Be a better friend, newshound, and

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

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

> >

>