Re: Re: A copy, the letter I wrote- To Jan

May 11, 2008

Wonderful idea. Can you give me an idea of how we could all do this? It would

be more than great. We need a compilation of the many stories of fibro. As

fibro has many things in common with us all, it also varies in levels of

severity and varies by a few symptoms.

I would be happy to add to it if I knew how we could do it.

love and hugs,

Debra V.

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

To: Fibromyalgia_Support_Group

Date: Sunday, May 11, 2008, 7:58 PM

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.

> > > 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

May 13, 2008

I think this is a wonderful idea!!!!! I think first each of us that want to be

involved need to write their thoughts and things that have happened to them from

start to where they are now. That way everything should be in order and we can

pull parts to put in the book. Title each paragraph for easy finding. Then we

need to decide on who would put the book together. I would be more than happy to

help with this process. I think this is wonder and hope that we can get it all

together. I love the title too!!!!! Gosh!!! I am getting really excited about

this!! Then after it is " put together " we need to find a publisher. I know

nothing about this part. Let me know about all this!

Also, I have the same problem with my daughter. She is the Mother of my first

born grand daughter. She is 6 months old and is just a joy and such a happy

baby. I try to keep her as much as possible, but lately with my Fibro and back

issues it's really hard. But she does't care! She drops off and sometimes seems

to be put out if I say no, I am in too much pain. So, I certainly understand.

Debra B

Re: A copy, the letter I wrote- To Jan

Hi Debra,

Ok here is what I think we should do first. I haven't read the

Fibro for dummies or any of those books. Strictly been word of mouth or

internet. So you'll have to tell me. If we do this we need a book that

no one else has done. Like not about FM but about the people with FM.

Is there already a book like that?

Then I think we should list all the things we want to talk about.

Sort of like what each " chapter " would be about. EX: One chapter could

be about how some doctors react to calling it Fibro. Another could be

about how people treat those of us with FM. Yet another about all the

different symptoms, all the different treatments. The many types of

meds. How everyone is different and yet the same.

Some how we need to get across that it is real, it hurts, it is

life changing. Let everyone " meet us " .

I was even day dreaming about a title. " What does pain look like?

The FM story " .

Does anyone else see the Comcast commercials with the Slowsky's?

Because that is how I feel. I look and move like a turtle, probably

feel like a turtle. But I'm not a turtle.

My big thing is explaining why i need the meds all day and why I

need the doctors. My own kids had me watch my grandchildren while in

the process of being dx. I kept hinting that I hurt too much and

shouldn't be left with them. I hurt so bad at the time. No meds yet

type of hurt. Of course I didn't say no. I love them too much. But as

soon as they came home I had my husband take me to the ER. When we

finally got home with my first batch of Vicodin, they jumped me because

i hadn't done anything all day. Silly had asked them to please do the

dishes that piled up. How come I suddenly needed to go to the ER. I

didn't look like I was in pain. I was moving my arms and stuff. Now

this was my SIL and daughter. The ones that have been living under my

roof for nearly 4 years. Had 2 children in that time and were " saving "

to build a house. I started crying because I could hardly breath when I

tense up and could hardly defend myself. The first thig that came to my

mind was. " What does being in pain look like? " Because if they wanted

me to flop on the floor or cry all the time. I could do it. I certainly

want to. But where does it get you? No where but it would be even more

of an excuse for everyone to leave me behind.

See now I'm crying. Even though we've made " peace " since then. I

am very careful not to even make a face. No one asks me to go hardly

anywhere anymore. I'm only good enough to watch the kids. Imagine that.

I love the kids too much to say I don't want to watch them. I love

having them. But still. My husband has been really good especially

lately. He's been taking me out to dinner. Even if it's just the local

diner. (without everyone else). We go for drives again. Short ones

because of gas. We have gone shopping etc. He and I usually have one or

both of the kids. They really are fun.

ok I feel better now. So back to the book. This is why I personally

would like this book. I want everyone (mostly my friends and family) to

know it isn't just me.

Let me know what you think. I've gotta make supper.

Take care.

Jan

PS That is why we need as much in put as possible. There are so many

stories and things that need said. I don't want to miss anything. Only

things we want known need to be written. I don't want to offend or hurt

anyone's feelings with a book. Only those that don't understand.

We already have a ton of research done. Just look at what we do if

someone needs help. FM questions or not. That's why I like it here. I

can whine and make faces. ^0^ ;o) *O* (o:

> Wonderful idea. Can you give me an idea of how we could all do

this? It would be more than great. We need a compilation of the many

stories of fibro. As fibro has many things in common with us all, it

also varies in levels of severity and varies by a few symptoms.

> I would be happy to add to it if I knew how we could do it.

> love and hugs,

> Debra V.

>

May 13, 2008

How about the Many Faces of Fibromyalgia...and you could have everyone's photos

on the cover....I like your idea. And every chapter could be made up of

different viewpoints from different people. I hate that people think we are just

dandy cause we look fine.