Re: I wish the non-believers would log on- To

[Guest guest]

My sister-in-law just got her LPN license and learned about fibro and

polymialgia over the past few years. She too says there was never any

learning on it in her early years of schooling. She's had to pause

her educational pursuits several times over the years. The first time

she really got to see what fibro can do, our friend, and you know

which one, she's only lived here where I am for almost a year, showed

her just how bad it can be. I had no idea how bad it could be until

she had been fighting the state to get her Medicaid straight, get to

a doctor, and so on. With no medications, I was amazed she could hold

her head up and move at all. Now, bless her, she still has her bad

days, but she has her medications and has a doctor. With that she is

marginally better, but her days swing from one extreme to the other

on occasion, even now.

I knew I was getting worse, but had no idea how bad until I spent

Christmas with my relatives, they came here. I realized how bad when

I could barely keep up with my 63 year old father. I'm 25 years

younger, by the way. Money is so tight I couldn't get to a clinic

even if I tried. I don't have Medicaid, and don't have SSI or SSDI

either one, because I've only been diagnosed with CFS. Granted, the

diagnosis was eleven years ago. I was diagnosed with TMJ ten years

ago.

I believe that not only do we have " non-believers " we have " skeptical

believers " they believe to a point, but then just think you're faking

it. That's what my parents thought in June when they came to see me.

They changed their minds when they saw me again in December, because

with the weather changes I was so much worse. My parents both have or

had a parent with polymialgia, both of those parents lived with the

disease for two thirds of their lifetimes. One of those parents still

lives. She is ninety years old and, amazingly enough, can still walk,

though it is quite slow maneuvering now. She's suffered with

diagnosed polymialgia since her 40's. That's when it actually had a

name, because she probably could have been diagnosed earlier. She was

diagnosed with Chronic Fatigue almost a decade before. That means she

was my age when she was diagnosed with CFS. I was diagnosed at the

age of 27 with CFS. 27! People don't believe it exists because

they're afraid of it. When you fear it, you refuse to see the truth.

It's like when we say cancer. It's an automatic response that

says, " No, no, no, no, no.... "

My brothers, two of them who have seen me, God bless them, see and

understand. My baby brother, twenty years my junior, was telling his

big brother, also my little brother, and my dear friend who suffers

fibro as well, that he didn't understand why Mom and Dad couldn't

tell I was sick. He could see it, even feel it, just by having me

walk around the house. You know it's bad when a seventeen year old

kid wants to cry as he hauls his big sister in his arms. We all know,

boys don't cry. Add to the consideration, my baby brother is a foot

taller than I am, and weighs seventy-five more pounds than I do. He

was so mad at my parents.

A. Neff

> >

> > If they did, they MIGHT think differently. Come on. How many of

> us are on this site? Are we all just crazy? If so, it is estimated

> that about 10 million people in America alone are having the same

> symptoms. I know I never read a damn thing about fibromyalgia and

> had no idea what was wrong with me until I got sick with it. I

guess

> they think we look it up on the internet and decide " I think I will

> have that disease " . I can tell you now that if I was a liar and

> wanted to make something up, it would not be fibromyagia. The

stigma

> alone would keep anyone from making it up. And how many walks of

> life do we come from????

> > Some days the world just sucks to me. I guess this is one of

> those days.

> > Love ya all. You are the only ones that are really there for

> me. I get no understanding from anyone except the people here. Even

> the few that want to understand me cannot understand me. #1- they

> don't care enough to read anything about it and #2- they think " it

> can't be THAT bad " .

> > Debra V.

> >

> > between 0000-00-00 and 9999-99-99

> >

> >