Re: to Debra (from Darlene)

[Guest guest]

Debra,

I know those days! I have been on long-term disability since 12/06

and we (docs and atty and I) have been fighting for SSI ever since.

Now with the latest (and hopefully last!) dx of fibro, we may

eventually win, who knows?

The downside for me is as the day goes on, if my pain level is up or

I am feeling horrid, I get " no sleep " circles under my eyese and they

change color (from blue to gray). So those who know and love me know

those days. But they don't know much about fibro either because it's

just been given to me as a dx. So.......

Thanks for the gentle hugs for all you gave. This IS not a nice

disease. On the outside I look normal (although still losing

weight...lol...thanks to the diabetes, I have no choice!). I know my

family is thinking " why CAN'T she do that? she used to be able to! " .

They'll get over it.

Darlene

>

> Oh I hate those days. I know what you mean. That is so

aggravating. Everyone thinks " I can't see fibromyalgia.... so it is

not there " .... It makes me plain ticked off.

>

> I got up for a change today and fixed my hair and makeup. Did

not feel like it, but I am tired of looking so bad. D/H knows how

bad I look without makeup and so do the people I work with. Yet...

they don't believe I am sick. What the hell? I look like death

warmed over most days and feel like a big pile of $#it. I guess the

co workers think I am an alcoholic or something because I think most

would rather believe that than FM. I feel really bad all the time.

A few hours of the day I MIGHT get to feeling almost normal. But it

never lasts long.

>

> It sucks to live with an invisible disease that designs itself to

make us look like liars. This is the most cruel disease anyone could

have because it hides. They think we are a bunch of wimps.

>

> hugs to ya girl,

> Debra V.

>

>

> ---------------------------------

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>

[Guest guest]

Darlene,

As you know I'm just investigating right now.

Never been told that I have fibromylagia but wonder if I might.

Everyone always says to me " but you're always sick " and brushes if off.

They believe me that I'm sick. Just that they are used to it.

I wonder why they think that if you are sick often that it's easier

than being sick now and then??!!

I've realized that if I don't feel well 1 day that it's ok and I need to

rest.

If I don't then the asthma takes hold and I get really sick.

So I'm taking care of myself that way most of the time.

But I've also been trying to ignore it and not make an issue of it.

Been wanting to know what it's like to KNOW what each day holds for me,

like most people do.

Elaine

>

> Debra,

> I know those days! I have been on long-term disability since 12/06

> and we (docs and atty and I) have been fighting for SSI ever since.

> Now with the latest (and hopefully last!) dx of fibro, we may

> eventually win, who knows?

>

> The downside for me is as the day goes on, if my pain level is up or

> I am feeling horrid, I get " no sleep " circles under my eyese and they

> change color (from blue to gray). So those who know and love me know

> those days. But they don't know much about fibro either because it's

> just been given to me as a dx. So.......

>

> Thanks for the gentle hugs for all you gave. This IS not a nice

> disease. On the outside I look normal (although still losing

> weight...lol...thanks to the diabetes, I have no choice!). I know my

> family is thinking " why CAN'T she do that? she used to be able to! " .

> They'll get over it.

>

> Darlene

>

>

> >

> > Oh I hate those days. I know what you mean. That is so

> aggravating. Everyone thinks " I can't see fibromyalgia.... so it is

> not there " .... It makes me plain ticked off.

> >

> > I got up for a change today and fixed my hair and makeup. Did

> not feel like it, but I am tired of looking so bad. D/H knows how

> bad I look without makeup and so do the people I work with. Yet...

> they don't believe I am sick. What the hell? I look like death

> warmed over most days and feel like a big pile of $#it. I guess the

> co workers think I am an alcoholic or something because I think most

> would rather believe that than FM. I feel really bad all the time.

> A few hours of the day I MIGHT get to feeling almost normal. But it

> never lasts long.

> >

> > It sucks to live with an invisible disease that designs itself to

> make us look like liars. This is the most cruel disease anyone could

> have because it hides. They think we are a bunch of wimps.

> >

> > hugs to ya girl,

> > Debra V.

> >

> >

> > ---------------------------------

> > Looking for last minute shopping deals? Find them fast with Yahoo!

> Search.

> >

> >