This comes from a group that is not a message board... just a
collectiona of all our stories and letters. Definitely seeking more
members. No E-mails here, and no participation required. Just need
your membership - but of course if you also want to post your story
or join in by replying to members stories - that is both things this
Unique Group would enjoy. But Bring You Discussion Back To Your Group.


From: Pamela G. Thompson
Date: Sunday, Nov 10, 2002 - 6:09am
Subject: Pamela doesn't like it when someone angers her doctor.

And remember our groups address is:
groups.yahoo.com/group/chronicpainstories
NOT A GROUP - A SHOWCASE FOR ALL OUR LETTERS HERE!
A Responsive Responsible Chronic Pain Members Web Gathering
** With the very recent overturn of the House of Representatives we
absolutely
must stand up and start to make a difference. This is our chance!!
We need to start to take responsibility and start to become a bit pro-
active.
Please join here - and help us all reach that goal in the months
ahead.
Remember to public officials - Senators and Congressmen - our number
mean one thing - votes and voters. Their are a few watching us right
now!
Your Membership Means another Vote ... Nothing else is needed or
expected.

AND NOW.... our most recent story

A Chronic Pain Patient – Speaking For So Many

To whom it may concern,
Which by the way is any of you who are reading this, that has made
ANY attempt to prevent, interfere, intimidate, harass, or prevent me
from getting the monthly and consistent opiate pain medication I need
in order to have a "normal life"!! I am diagnosed as an intractable
pain patient, (by several physicians... no - not just one but
several) and I not only need your help, but I also need your
consistent support!

Many laws have been passed in the state of California in order to
protect true and documented intractable pain patients such as myself,
yet I live in terror each month as I read stories of doctor's who are
being harassed, prosecuted, and driven out of practice for abiding by
those laws by prescribing the opiate pain medications - required - by
us to have a functioning life.

I have a right NOT to be a prisoner of my couch or bed, yet I have
been chained to that couch and bed in my past for many years. Yes, I
was sentenced without at trial, or any fair representation.

I have a right NOT to be treated as if I am some kind of low-life
drug addict, because I have had the unfortunate luck of contracting
diseases that cause me unrelenting chronic pain that totally
incapacitates my ability to live any kind of life. For many years I
was left alone on that couch or in my bed as my family, and friends
could go on with their lives, unfortunately, without me. I was unable
to attend functions at my children's school events, or even have the
freedom to attend a dinner out in a restaurant, or see a movie,
because I couldn't move.... the pain was overwhelming and yes, it
does – it totally consumes your every thought, (as most of you know)
and it has and does totally prevent me from much freedom of
movement – and although the pain medication does make it better, I'm
a far cry from not living right on the edge of hell here.

It was so difficult to move so many days, that I had many times where
I couldn't even twist enough, to wipe my own bottom after using the
bathroom toilet. Yes, I know what it is like to have no life, no
dignity, and be one-hundred-dependent-percent dependant on everyone
else around me to keep me alive. If you can't leave your couch or
bed, or you can't go to a grocery store to buy food. Then lets face
it, you can't do anything, except hope that the next morning God will
grant your wish and prayers that you die in your sleep that night, so
you don't have to face another day like every day prior.

That is - until that day you found out that opiate medications can
stop this horrible existence, and give you back your normal life (or
at least most of it) most of the time.

I have to say that with today's attitude toward those patients that
have chronic pain, it should be the Hypocritical Oath, instead of the
Hippocratic Oath. I can't tell you how many doctors treat chronic
pain patients, by suggesting that the patient go see a psychiatrist
to deal with their pain! Now what is that going to accomplish? Is
that doctor suppose to convince you, that your pain is all in your
head? Nope, I don't think so. Especially since most of these patients
can, and do bring medical records, test results, and supporting x-
rays to prove their disabilities.

Most seemingly don't have any idea, nor simply show any real interest
in even finding out what a day with chronic pain is like! This let
alone the extended period of time that we spend just dealing with it,
finally yes it does break some of us! The pain alone can do this by
manifesting itself daily into your life, and destroying your very way
of being. Me, I hurt from the moment I wake up, to the time I have to
try and go to sleep.

Most mornings I am absolutely disappointed that I haven't died during
the night, so I would be released from my hellish existence here on
earth. Pain is the first thing I feel when I wake up, and it's the
last thing I feel if I am lucky enough to fall asleep. Most people
have the luxury of falling asleep, although my nights I am usually
awake all night, and the others when I do get some sleep, I do so
because I have dropped from exhaustion.

Now let me tell you about my sleep, because when you have chronic
pain it doesn't stop while you sleep. Instead it invades your dreams
like a thief, it steals what little rest you might have gotten, if a
caring doctor had given you enough medication, so you could sleep
comfortably during the night!

The latest buzz phrase is to ask a patient on a scale of one to ten,
a ten being the worst, what would you rate your pain at right now?
Excuse me for saying so, but this is a joke. Even if the nurse writes
down what you actually tell them, most of the doctors skip right over
it, in their rush to tell you that they really can't do anything for
you, because your pain is chronic. Like you really had the money and
the time to burn, so some doctor can charge you $200.00 for the
pleasure of having an initial consultation with you on chronic pain,
which is usually most definitely - something you already knew! Yes we
live very close to the edge daily. If I didn't have chronic pain, I
wouldn't have needed the help of doctor in the first place!

Now you might be wondering what remember this might have to do with
that oath the doctors take. You remember that line.. Physician shall
do no harm? LOL, I have chronic pain today, and I will have it
everyday for the rest of my life, because of the selfish act of a
surgeon. This physician even admitted to my primary care physician,
that he tried this new procedure to try to cut down on his mortality
rate! Without notifying me, I had turned into his private lab rat!
I'm very comforted upon learning this – his mortality rate?

No matter how much money a law suit could award me, it wouldn't be
nearly enough to help me adjust to the fact, that I will hurt
everyday and night, for the rest of my entire life. You will never
know how much I wish for my life to end sometimes, when the pain
reaches suicidal levels for me. But do believe me when I tell you
that if my faith wasn't so strong, I would have ended my life by my
own hand long ago. BUT… for the sake of my children I can't do it,
because it would leave a legacy that they could never escape, and I
can't do that to them! However, it is unfair and totally unrealistic,
for anyone to assume I should have to live the rest of my life with
pain that is so terrible, that it prevents me from leaving the
personal prison of my couch.

My chronic pain is so bad, that I can no longer participate in my
family's life. I watch their lives as they live it without me. I
can't go to all the family activities, or even participate in the
upkeep of my own house. Money is so tight, because of all of my
medical bills, that we can't afford to go anywhere or do anything.
Even if we could, I couldn't go because by the time we even arrive at
our destination the pain gets so bad, that I can't stand,sit, lay
down, or walk for more than twenty minutes at a time.

All of this could and has changed with a few sympathetic doctors, but
only those who specialize in pain management will I allow to write
any class II prescriptions as per written contract. My doctor also
keeps track of what pharmacy I use, and keeps my other doctors
informed, that only he will prescribe any pain medications for me
what so ever! Doctors like these have the knowledge, and the capacity
to stop chronic pain. Some have the courage it takes to prescribe
opiates for chronic pain. However if they do, they become targets for
the DEA.

The DEA has turned all the lives of chronic pain patients into a
living hell. They persecute doctors who prescribe it, pharmacists who
fill it, and patients who take it. They transgress the Constitution
of the United States of America. They entrap, harass, persecute, and
bully patients and their families all in the name of the Drug war.
They even have convinced the media to keep the plight of chronic pain
patients quiet, all in the hopes to catch a few illicit low-life drug
users that do break our laws! I can assure you, that chronic pain
patients don't have the ability o get a "high" off their medications.
They take these pain relievers for one reason, and one sole reason!!
they want their pain to stop, so they can reclaim their lives.
Opiates can be habit forming, but that doesn't mean they are habit-
forming to a chronic pain patient. It's just a warning, just like you
are warned that some men can develop prostate cancer around the age
of fifty. That doesn't mean all men will or do get it.

Before you find these specialist doctors to help you get your life
back, your friends and family become scarce, because they either
don't know what to say, or they believe the continuous stream of
doctors you have seen, who have turned their backs on you, well that
says it all doesn't it? Yes… it's all in your head! It's being
confirmed by each doctor that can't find something wrong, isn't it?

Yes some family members and relatives simply stop talking to you, or
including you in of the "reunion activities", because they feel you
are just too weak, and now you really have become a non-person
haven't you? And worse, these same people actually think they are
doing you a favor.

If you add to that, having a disease that has no outward signs of
being active, you are doomed! I have systemic lupus, hypothyroidism,
arthritis, and am recovering from two attacks of the flesh-eating
virus that truly almost took my life several times, fibromyalgia, and
I can assure you I have very little outward signs I am ill. However,
I have spent several times in my life where I've lived in a hospital
for more than a three-and-a-half to four month periods at a time!
That in and of itself leads to depression. Trying to watch that your
family, that watches you and sees you hurting so badly, making sure
that they don't also seee you cry on top of it, that in itself is a
real chore. Everyone around you feels just horrible,overwhelmed, and
terribly depressed to see you in this shape.

Yet strangers will consistently tell you, oh; you look so well, you
don't look a day over 39, they just don't "see" this pain that is
driving your life , and if they do see they try every form of
diplomacy to get through and past you. I've seen this so many times.
Oh yes I can, and I guess I should find some way to show that I hurt,
but then again they would just get sick of that too after a while.
How does one win here? AND… I know many of you feel the same! I just
know it, I can feel it!

Until doctors and patients take a united stand against chronic pain,
thousands of people will die before their natural time. You see it in
the news weekly, a chronic pain sufferer couldn't stand the pain any
longer, so they forcibly entice police officers to kill them so they
don't have to do it themselves. They even have a name for it now...
it's called something like "intentional suicide by police".

My case is all the more complicated by my having had a gastric by-
pass operation. You see, no doctor ever told me that by having that
operation I was opening up myself to a nightmare for finding and
being able to use pain-killers. I would love to find a way to save
those peoples lives, and find a way to stop living in terror every
month, because of a very real fear of losing the rights I have
already earned as an intractable pain patient..... NOT a drug addict!
I have never robbed anyone, or broken any laws. I, in fact would like
all illicit drug-users and abusers to look at what they are doing to
us – how they are hurting so many innocent people just for their few
hours of "thrills". I wished I could line us all up and stare them
down, making them feel as small as they truly are!

Me.. my tiny, very delicate stomach can't take pain medications that
will work in my system, so I am forced to use other more
unconventional measures to stop my pain, but the point is my doctor
has finally found something that works for me. I just want you to
help me make sure that no one takes my rights away to live a full and
happy life. Believe me I have never had a "high" from anything, as a
matter of fact I don't, and never have used alcohol, or any
unprescribed medications. I also just have a feeling almost all of
the chronic pain patients at the groups I belong to on the internet
will tell you exactly the same thing to, because all that I hear is
this very fact. We only get the help we so desperately need for our
continual pain, and that's it! That is also, all we ask for of these
medications too.

All I want to do, is to be able to take the medications my doctor has
diagnosed for me and that I need. I want to be able to fill my
prescriptions, without being made to feel like a criminal. I sure
don't want to have to worry like this that someone will so
nonchalantly come along and stop my doctor from being able to let my
life continue on a normal basis. This month is a much more happy
month in our household. I can now participate a little bit more in
the everyday chores of daily life. Personally I don't think that this
small gain to my life is too much to ask for... do you?

I again thank you all here for your time, and please, please help us
true intractable pain patients, who have nowhere else to turn, and
change the focus of this drug war the DEA has, and put it back where
it belongs... either stopping our drug dealers from selling to
innocents or in stopping the more-threatening terrorists of the day
from killing our innocent American citizens. That's what they should
be doing, and not NOT attacking our human and so kind doctors that
try so very hard to help us live just a bit more comfortably, and in
some cases even get us close to being constructive, working citizens
again.
That is after all – all we ask.
Blessings to all,
Pamela G. Thompson, California

( The letter Pamela refers to below here in following paragraphs is
an open plea to our members and is about four messages back on
the "thread" on our message board – to save space here – we have not
included it – we're just asking that you go back to refer to it, and
read or possibly print it out also – and attach to this letter ).

See "Doctors need help now! Letter writers please help us."

Pamela writes:
I wrote the following letter of my own volition. Although I did ask
that anyone who had the time or the inclination to help write
letters, to please do so... I never intended to insinuate that I was
insisting that you follow my beliefs. I decided to ask this letter to
be posted here, so that others could see my lame attempt at trying to
do my part in an attempt to protect our rights, but more
importantly.... everyone's rights. If my letter offends you in any
way offend some of you then I do apologize, but again, these words
reflect my beliefs only and are not intended to sway you, or your
opinions in the least bit. Everyone should be free to make all their
own decisions, and that includes me.
Thank you for your time.
Blessings,
Pamela and KC, California,

Editor's Note: How eloquently Pamela speaks here for so very many of
us! Go right down the Member's List on this group and ask all. I dare
you, and I will bet anyone here, or that they bring here, that 99.5%
of our chronic pain patients here will tell you much of the same that
Pamela shaped here into words for us – applies to them also! Do I
have any takers?

A favor folks…. go back a few messages and do write a letter to the
officials in California as Pamela had asked us just a few days back.
This much we owe ourselves. We have a new fight ahead, with the newly
acquired and out of balance House of Representatives.

We all must start "to watch our backs" now as our medical care might
slip forever backward. Watch out here, and be observant – that's all
we are asking… and when you can, yes do offer a letter here and there
out to our politicians and other officials. It does lay on us each
individually. And no – don't put it off, and say, "well my closest
member here will, so why should I?" Instead make a commitment, and
start on a few sentence now and finish it as you finish up the week
here on this big blue ball that also belongs to all of us called
earth.

And of course, yes do – please – do contact Pamela, and thank her for
putting into words what most of us don't dare to! For those that are
here and those that are coming and who we consider our most ardent
supporters, Pamela does indeed speak for most of us, so come on –
anyone care to bet me a saw-buck here that almost all of our chronic
pain members here have and or are feeling the exact same way Pamela
describes herself now.
AND Pamela, Thank You!! Yes… thank you so much for speaking for so
many of us here! I couldn't have done it any better.

Pamela I am going to print out 10 (perhaps 20) copies of your story –
and pass it around at my doctors office and the pharmacy. Bet you –
yes, I also know that I won't lose here – as I know this writing on
paper will be used to do something more than sit at this board – it
will get beyond that – to my circle of townspeople and friends, so
they might hear your words too. May I ask and hope others here do the
same!

And for the doctors, nurses – and nurses to be – that are here with
our group now, please yes please do the same, up to and including
posting a few in conspicuous places for others to read. Members here –
here is an excellent opportunity to post this story in its entirety
to your groups too. I personally thank any here that do this – and
would love to hear from you that you have. ALL these responses will
be posted together in pride to this group later in the month! Enough
said?

Bruce Meyer Williams – Minnesota

I can be contacted at: bmwmcgrath@... for any further
comments either about this "story" and/or and opinions you might
have.

And remember our groups address is:
groups.yahoo.com/group/chronicpainstories/

* For those who are not in chronic pain – but would like to have more
insight into our lives and become our supporters… you are most
welcome to come and join us here at the above address. We welcome you
with open arms. This is every bit important as your most favorite
charity and here your membership costs you nothing, and your
participation is taken care of the minute you join us! That is all we
ask

We have a quality informative group here. Will you help us by
bringing us a member or two here this next month? Contact
purple_princess65@... and/or bmwmcgrath@... to find out
how you can help. We hope to reach 400 members by December 11th -
which will be our second month up!

We are not a group - we are a "watering-hole" for ALL Chronic Pain
Sufferers - so we just ask for your membership - that's it!

Please nvite your "support network" that is; your family members (yes
your own spouse AND children, too!) All count as another member to
our group, and we need members - remembers members mean voters to our
politicians! Invite your friends and your doctors, nurses, and social
workers, etc.

Your friend in pain here,
Bruce Williams - Minnesota
contact me @ bmwmcgrath@...

"There are two ways of spreading light, to be the candle or the
mirror that reflects it. ~ Edith Wharton ~
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
One day at a time - this is enough.