Pain Care Policy Act of 2003

[Guest guest]

I found my congressman by accessing the website I mention in the

second paragraph. Perhaps you guys would like to write to yours...

this Pain Care Policy Act of 2003 is very important to all of us. You

needn't write one so long as mine...in fact they would probably

prefer that you don't ! Hugs, Jeannine

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

My name is Jeannine . I suffer with six separate chronic

health issues, four of which involve chronic pain: Fibromyalgia,

Pancreatitis, Arthritis and Migraines. The other two conditions are

Diabetes and Sinusitis, the last one involves some pain but not a

significant amount when compared to the others.

I would like to ask you to support the Pain Care Policy Act of 2003

(HR 1863) that is before Congress...one website address concerning

this topic is located here:

http://www.ampainsoc.org/whatsnew/050903.htm

Living with chronic pain is no fun ! I have chosen to be as upbeat

and positive as I can, but chronic pain is very wearing...it drags

you down physically AND emotionally and even spiritually. I have

been living with constant pain for close to 30 years and I am just

51. As you can see, this is greater than half my life !

I started with a diagnosis of migraines in 1975, though looking back

over my life I believe I had the early stages of them as young as 10

years of age in the 5th grade.

I have been in 5 car accidents since the age of 12; in three of the

car wrecks I was rear-ended, so I had three whiplash injuries for

certain...but may have had them in the other accidents as well, so I

always say I have had three to five whiplash injuries. I have also

endured fourteen surgeries...and multiple dumb and dumber accidents

over the years!

At the age of 35 I was diagnosed with " arthritis advanced for the age

of the patient " by the radiologists...I believe they thought I was 15-

20 years older based on what they saw in the films.

In 1994, at the age of 42 I was diagnosed with my first pancreatitis

attack and was admitted to the hospital for 4 days of treatment. The

cause of this attack and subsequent ones was a case of highly

elevated triglycerides, one of the fats in the blood. I thought it a

cruel joke to have what most people think of as a " drinker's disease "

on fewer than two dozen drinks a year !

After ten years of searching for answers as to why I was in such

constant body-wide pain I was finally given the diagnosis

of " fibromyalgia " in May of 1993 by my current doctor. What a relief

it was to finally have ONE diagnosis! Up until this moment I had

been treated as the hypochondriac queen with a page full of diagnoses

.....now I had just ONE diagnosis, with many components. My euphoria

at having one illness versus twenty was short-lived however, when I

was told there was no cure and not very many effective treatments !

This word fibromyalgia, when broken down into its parts, is easy to

say and easy to understand: " fibro " refers to the fibrous tissues in

our bodies, such as the fascia that covers the muscles or the tendons

and ligaments. " My " stands for muscles, and " algia " (pronounced

as " al-juh " ...said with a soft " j " sound) means " pain " ....thus: pain

in the muscles, tendons and ligaments.

But to have a complete understanding of this miserable health

condition you must also know that fibromyalgia is SO much more than

" just " a pain disorder. It interferes with our sleep, it can cause

irritable bladder and irritable bowel symptoms, dryness in the eyes,

mouth and other mucus membranes, headaches, allergies, multiple

chemical sensitivities and a weariness that no amount of rest

alleviates! And it never ever goes away.

It's with us when we wake up; it's with us when we go to bed. It

affects and/or interferes with our work, our sleep, our play, our

very lives and the lives of those who live with us and care the most

about us.

It prohibits us from making long range plans with our friends or

family without adding " depending on whether I am able to or not " at

the end of the discussion about joining so and so for dinner or the

movies or even a simple stroll around the block. It disrupts our

sleep, our plans for and with our family, it breaks up relationships

with friends and family and has been the cause of marriages

dissolving. It interferes with and affects the relationships we hold

most sacred: that of being a spouse or parent! It affects everything!

And everything affects US when we have fibromyalgia! Loud noise,

strong odors (pleasant or otherwise!), bright lights, repetitious

sounds like the deep and yet piercing bass sounds emanating from the

cars of teens these days...weather changes that barely cause anyone

else to even notice can cause wildly fluctuating emotions and pain

levels in those of us with FM.

We are treated as though we have a mental condition...you're just

depressed so cheer up...or stop worrying about everything, " lighten

up " or stop streesing so much or my personal favorite: surely you

must be making this up...no one can be in as much pain as you say you

are and yet " look so good " ...Fibromyalgia is a fluctuationg illness.

It plays mind and body games on us...today I might feel pretty good

so I decide to go outside and work in the garden...I am having so

much fun being outdoors and enjoying the sun and fresh air that I

don't realize the amount of time that has passed...when I go to get

up from weeding I find I cannot move...the pain is so intense as to

prohibit me from doing much more than crawling up the stairs to the

house (thank goodness there are only three, I don't know what I would

do if there were more!...)

Many of us have had to move to a different house because we can no

longer manage the stairs! I am one of them...we lived in an

apartment that required multiple daily trips up and down three

flights of stairs...now I am eternally grateful to have only three!)

And if you think this misery after working in the garden is the worst

of it...wait until morning....I will most likely not be able to get

out of bed...or if I do, I cannot function well...I cannot lift my

hands over my head, so I guess I cannot get out of my jammies in

order to take a shower and change into my work outfit so I can't go

in to work today ! And then comes the three days of recuperating if

not more!

These are examples of real-life scenarios from either my life or the

lives of the women I have met through the support group I started

nearly ten years ago ! I started this support group in order to be

able to validate the pain and suffering and feelings of worthlessness

these women (and some men) suffer with on a daily basis. We do not

get any validation from society, our family and friends desert us,

the doctors who are supposed to take care of us wash their hands of

us, there are many who do not believe fibromyalgia to be a real

medical illness, and on top of all of this misery our employers dump

us when we run into difficulty trying to perform our previously

enjoyable jobs/careers.

Employers have a funny idea of wanting us to show up to the workplace

and actually *do* the work assigned to us! This takes the monumental

effort of getting out of bed, getting showered and dressed, finding

your way to the job site (even if you've been in the job for years,

the mind can play tricks on you and you can get lost going somewhere

you've gone hundreds of times before!) and then when you DO show

up...another funny thing...they actually want you to do the job you

signed up to do! But what they don't know is your brain has decided

to stay asleep.

We affectionately call this " brain fog " ...though there is nothing

funny or affectionalte about it...because it is like a layer of fog

has settled in and around and through your very brain prohibiting the

simplest of tasks from getting done. I've been known to answer the

phone at work, put the individual on hold to page overhead for whom

they asked and if I don't forget the overhead pager number (I've been

in this job ten years!), then I will have forgotten what it is I am

supposed to say into the speaker !

Luckily this doesn't happen often, but it is disconcerting for me as

I have been told in the past what a good memory I have had....but not

any longer ! This is the same individual who had her credit card

numbers memorized (some had 16 digits!) and didn't know this was

abnormal ! And now I can barely walk 20 paces to a phone with a

seven digit number in my head and be certain I have remembered it

correctly. Usually I do but it plays such mind games with me that I

no longer feel I can trust my memory!

This is the same individual who entered the Navy at the age of 20

with scores on the entrance exams that came within 1-2 points of

qualifying me for Mensa and who graduated Summa Cum Laude at the age

of 35....but now my brain is mush !

This fibro-monster steals our hopes and dreams, our jobs and our

careers, our lives and our dignity ! I know many women who have had

to completely give up their chosen career fields, go out on

disability due to the degree of diminished functioning or settle for

something much less satisfying.

I personally was trained to be an LPN. I loved working on the wards

with the patients but eventually I had to give up the work. I could

no longer bounce back from the rotating shifts like I once could.

Then I could no longer stand on my feet all day so I had to give up

the work I did in the laboratiory. Then I took a job in the pharmacy

but the constant typing led to carpal tunnel syndrome, so I had to

switch jobs again.

This is when I went back to college in my early 30's with an infant

at home and a husband out to sea more than he was home. My brain was

still working then so I went for a degree in health education. By

the time I graduated, my husband was trasferred to another state and

this place hadn't heard of Health Education as a field ! I took a

job in medical records because it was available and it gave us an

income...as low as it was....I was making 33% less after getting my

degree than I was before I opted to go back to school !

My health began deteriorating at a rapid pace over the next 5 years.

I had surgery on both hands for the carpal tunnel, then I had a

hysterectomy, I slipped a disc in my neck (probably from all those

whiplash injuries in the previous 25 years!) and had to have surgery

to fix it or eventually become paralyzed...I also developed sinusitis

for the first time, then insomnia and then a seizure disorder which

has gone away since that time...I was dealing with a lot of health

issues in a short period of time. It was after being transferred

from the last state we lived in to Washington State in 1992 that more

health issues started cropping up leading to my eventual diagnosis of

fibromyalgia.

I'm sorry this letter has been so long but I felt it necessary to

give you the gut feelings I live with on a daily basis along with 7

million other people in the US...FM mostly affects women in a 9-to-1

ratio with men. I guess that's partly why it has taken so long for

our condition to be recognized and validated. Everybody knows what

low back pain is, or arthritis, or even bad feet, conditions that

effect both men and women...but not much was known about FM until the

last decade or so when the American College of Rheumatiology came up

with criteria necessary to warrant a diagnosis of FM....even still

the battle has been all uphill !

Thank you SO MUCH for your time and attention to the subject of my

letter....I remain sincerely, Jeannine M