Fwd: Amorphous, no cause/no cure/ no clear definintion disease

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debra van ness wrote: Date: Wed, 23 Jan 2008 04:42:41

-0800 (PST)

Subject: Amorphous, no cause/no cure/ no clear definintion disease

To: editor@...

Just a letter to let the people who would dare refer to the sufferers of

Fibromyalgia in such a manner. Fibromyalgia has been around and was a very REAL

illness long before Lyrica hit the market. I am a sufferer of this horrible

invisible illness which rips the lives of millions of Americans apart and

millions worldwide. I am not a hypochondriac, a liar, a lunatic, or a lazy

person who wants to get out of life's many responsibilities. I must ask if

anyone would " choose " to have fibromyalgia. We suffer not only great pain

physically but also great emotional pain from being labeled lunatics and liars.

If we were making this up, we would simply " forget " we have this cursed

" syndrome " simply because of the stigma attached to it.

I was diagnosed about 5 years ago though I had symptoms so mild for years that

I even ignored them. Fibromyalgia hit me full blast at the age of about 39. I

had no idea what the word " fibromyalgia " meant and had not even heard of the

illness until I was so sick with it I sought a diagnosis for it. I then had to

research it myself to find out what it meant. I am a registered nurse of 15

years now. I was as uninformed as most of the medical community remains at this

point. I might add I am a respected nurse and have never had a stipulation on

my license. I am not a lunatic.

I deal with the stigma of this illness from my colleagues, family, and

friends. I do NOT take Lyrica because I am uninsured. It is too expensive at

this time. My doctor has NEVER pushed Lyrica on me.

If a pharmaceutical company develops a drug for MS or Lupus, it is praised.

But of course this unbelievable disease without objective data is simply for

lunatics and liars.

I DO NOT choose to wake up like this everyday. I do not get any secondary

rewards from the government or get out of any of life's responsibilities. So, I

must ask, what do I gain from this miserable " syndrome " ?

Please ask yourself if you would like to wake up every morning so stiff you

can hardly move for the first hour? Would you like to have numnbess and

tingling in your fingers to the point you cannot feel them at times? Would you

like to be in horrible pain when no one else can see it? Would you like to live

your life with chronic exhaustion no matter how much or how little you sleep?

Now, would you like to live with a stigma of disbelief on top of all this?

I will add that until about 5 years ago I never had a pain that Tylenol would

not take care of.

Yes, millions of people from every walk of life suffer this " amorphous " " no

clear difinition " illness.

Debra Van Ness R.N.

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