Re: to Jan

[Guest guest]

Jan, how do we begin though?  Do we write the segments on the computer and where

would we send them to put it all together???  Just wondering how we would go

about it.

love and hugs,

Debra V.

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

To: Fibromyalgia_Support_Group

Date: Monday, May 12, 2008, 4:52 PM

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.

>

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