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Carol, showing them your x-rays and an article or two on flatback by a scoliosis

surgeon should do the trick. This is what I showed my internist, and she was

very understanding. I'm not in a lot of pain; my worst area is my hands/arms,

which may actually be from overuse as a pianist (no spine doc seems willing to

link it to my spine condition). So she has me on an antidepressant which acts

as a muscle relaxant, and an anti-inflammatory as needed.

So I can't speak of " serious " pain medication, though I think I could get it if

I needed it.

Sharon in Southern New Hampshire

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 Harrington rod fusion, T5-L4, flatback, L5-S1 degeneration, etc.

mission

Is this group just for people who have had, or are seriously planning

the revision surgery ? Trying to find any posts regarding the

Durgesic patchs. I am having only partial pain management from it.

Please note my recent address change from robinet1947@...

to caroljhoffman@.... Very isolated where I live. And no

one wants to ask about my bent forward posture, it is just like

people are too afraid to ask. My vertabrea just above my fusion down

to include the sacrum and the pelvis is giving me great pain. How do

we go to a doctor and try to convey to them that we are genuinely in

PAIN, and not " drug seeking " ?? cjh

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Dear Carol:

I am so sorry to hear that you are having trouble getting the pain

relief you need. I have found this to be one of the biggest

aggravations that I face. However, I finally found a Pain Management

Specialist that is wonderful and I think from the other people I

have talked to that this is about the only way to go if you need

narcotics to help you get the relief you need and deserve. Are you

close to a large city that may have a Pain Mgmt Dr? If so, I would

definetly try that and take with you all of your records, x-rays,

etc..

Good luck and I would love to hear from you and how you are doing!!

Write if you are feeling up to it.

Be safe and God Bless,

Debbie

---

In , " caroljhoffman "

<caroljhoffman@y...> wrote:

> Is this group just for people who have had, or are seriously

planning

> the revision surgery ? Trying to find any posts regarding the

> Durgesic patchs. I am having only partial pain management from it.

> Please note my recent address change from robinet1947@y...

> to caroljhoffman@y... Very isolated where I live. And no

> one wants to ask about my bent forward posture, it is just like

> people are too afraid to ask. My vertabrea just above my fusion

down

> to include the sacrum and the pelvis is giving me great pain. How

do

> we go to a doctor and try to convey to them that we are genuinely

in

> PAIN

, and not " drug seeking " ?? cjh

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Carol,

I've just returned from a very enlightening few days in Washington, D.C. on

this very subject...Pain Management and where to find it. It was an exciting

few days to say the least and I'm pleased to report that OUR VOICES ARE BEING

HEARD ON CAPITOL HILL FOLKS!!!

At a press conference on Monday September 8, a new virtual text program on

Pain Management was introduced to the media. It will be available in 2004 to

medical students as an on-line text, free of charge. After speaking with many

people involved in the care and treatment of chronic pain patients, I can tell

you for a fact that it's NOT widely known in the medical community that

chronic pain is, by far, one of the most under-treated if not un-treated

illnesses in this country. Not enough docs know how to treat if, and certainly

too many docs are afraid to treat it. One of the speakers at the press

conference was former Health and Human Services Secretary Dr. Louis Sullivan

who stated that " Untreated pain, tragically, is an epidemic in the United

States " . Dr. Satcher, Former Surgeon General of the United States told

the group that " nearly 50 million Americans---almost one quarter of our adult

population---suffer from persistent pain. " " The social costs of pain also can

be staggering, reaching one-hundred billion dollars annually from, among other

causes, lost work days and unnecessary hospitalizations. " Dr. Jordan Cohen,

President of the Association of Medical Colleges stated, " If we are to treat a

future generation of pain patients, we must first educate the next generation

of doctors who will care for them. "

And then of course, there was little ol' me...who spoke at the very

beginning of the press conference to supposedly " put a face on chronic

pain " ...at least that's how I was introduced!! Folks, let me tell you, I've

never been so scared yet so unbelievably motivated in my life!! After speaking

with several members on the Board of the American Pain Foundation after a

rehearsal the night before the news conference, I realized that it's people

like us that they really want and need to hear from!! Many of them had never

even heard of Flatback Syndrome or HARMS, so besides telling them what it's

like to feel so frustrated looking for someone to treat my pain after going

through so many difficult surgeries, I also had the unique opportunity to put

FLATBACK SYNDROME/HARMS front and center in front of millions of people!! The

story was picked up by the AP and Reuters news wires and I also gave one-on-

one interviews to CNN, MSNBC, FOXNews, and several local (D.C.)reporters. In

every interview I talked about Flatback and it's " first cousin " , PAIN!!

I was in D.C. at the invitation of Perdue/Pharma (the manufacturers of

Oxycontin...it having been the subject of plenty of BAD press in recent

years). They have hired a PR firm in D.C. to get some GOOD press on Oxycontin.

I have been on Oxycontin CR for 18 months and they have been the best 18

months I've had in a very long time. One thing I repeated over and over (and

over!!) again, in the press conference and in every interview I gave, was

that " a person's quality of life is directly proportionate to their

functionality and if you can't function, you have NO quality of life! " Too

many medications I was prescribed over a 6 year period of time, (pre and post

revision surgery) made it impossible for me to function at all; I was either

too gorked to see and talk or too nauseated to leave the house. Oxycontin CR

was the first med I was EVER prescribed that did none of those things to me.

But even though it was Perdue who picked up the tab for me to stay in D.C. for

3 days, NOT ONE PERSON EVER told me what to say or put words in my mouth or on

a piece of paper in front of me and I really respect them for that.

The doc I FINALLY found to do my Pain Management is, of all things, a

Primary Care physician who has taken continuing education courses on Pain

Mgmt. He's the first doctor who ever had the courage to put me on Oxtcontin

and Neurontin as a pain mgmt. regime. I signed a " PAIN CONTRACT " with him that

basically stated I would not attempt to get drugs for pain from any other

doctor; that I would only take the amount prescribed; that I would honestly

report any side effects immediately; and that if I missed/canceled more than 2

appointments in a one year period of time that I would be immediately dropped

from the pain program. After all the crap I had tolerated from other doctors,

even so-called Pain Management doctors,...everything from being told that the

pain was in my head and I needed a psychiatrist (which I saw to keep him

happy! The psychiatrist took one look at my post-revision x-rays and said " I

think it's your doctor who needs to come see me! " )to being told that my pain

was due to menopause!! I'm guessing that there are many of you out there

reading this who are saying to yourselves, " Oh my God, that's exactly what

I've been told, too!! " Well take heart folks...there really are doctors who

don't think we're nuts or that we're all menopausal...I'm sure that's a big

relief to all you guys out there!!! The problem is finding one of them and

getting good, reliable, treatment (which may or may not include opoids).

Hopefully, the days of being unable to find treatment for chronic pain are

quickly coming to an end (I know...my mouth to God's ears!!). Just as it's

been so difficult for many of us to find someone competent enough to treat our

Flatback, be it surgical or non-surgical, it's at least that difficult to find

someone to treat pain...be it pain from HARMS or cancer, or whatever...PAIN IS

PAIN!! The last 2 lines of my speech to the media...the 2 lines that have been

most quoted on FOX News, CNN, USA Today and several other news sources, are

these...

" THAT'S WHY I'M THRILLED TO HEAR ABOUT THIS NEW INITIATIVE TO TEACH FUTURE

DOCTORS HOW TO TREAT CHRONIC PAIN. NO ONE SHOULD HAVE TO SUFFER LIKE I DID. "

By the way, the med student program is called TOP MED OR " TOPICS ON PAIN

MEDICINE " . It is a comprehensive " virtual textbook " on the proper treatment of

patients of all ages suffering from different types of pain. It will be made

available free of charge to medical students across the country in 2004.

Ideally, Pain Management will one day be a required course for all medical

students, interns and residents. That day is fast approaching and I've had

the privilege of being included in on this ground-breaking work. I took copies

of many of the e-mails regarding pain and pain management or lack thereof,

included on this web site, (taking GREAT care to make sure that no one's e-

mail address and/or name appeared anywhere on the printed copy) and passed

them on to several doctors, medical school professors, pharmaceutical

manufacturers reps and also to several senators and congress-people that were

present at the press conference. Some of your personal stories of pain and

surgery really raised some eyebrows and got more than a few conversations

going!!! As one of the Perdue folks said to me as I was getting in a car to

come back home... " I don't know how we'll ever be able to thank you for all

you've done for us the past few days. You've put a face on the issue of

chronic pain here on Capitol Hill; and you've even managed to get some of

these people to quit talking and thinking only about themselves and start

talking about you and all the people like you who suffer in silence every day.

They won't soon forget the face and voice you've put on chronic pain!! God

bless you. " ... to which I replied, " No sir, thank you...FOR GIVING ME THE

HONOR AND PRIVILEGE OF BEING ABLE TO HAVE A PLATFORM TO SPEAK FOR ALL THE

PEOPLE LIKE ME. You've given us a chance to be heard on Capitol Hill for the

first time. "

SO THANKS TO ALL OF YOU!!! THANKS FOR ALL YOUR INPUT AND SUPPORT ON THIS

SUBJECT!! I won't give up our fight...I've only just begun to get people to

listen to me.

All the best,

Beth

P.S. Anyone looking for a physician and/or Pain Management program in their

area should check out the following web sites:

The American Board of Pain Medicine www.abpm.org

The American Pain Foundation www.painfoundation.org

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Beth,

You rock! Wish I;d have seen the press conference! Congratulations!

denise

Banner, RN, CCM, RN-WCCM

Nurse Case Manager

First Rehabilitation Resources, Inc.

336-299-9995 (Phone)

336-299-3440 (Fax)

Re: mission

> Carol,

> I've just returned from a very enlightening few days in Washington, D.C.

on

> this very subject...Pain Management and where to find it. It was an

exciting

> few days to say the least and I'm pleased to report that OUR VOICES ARE

BEING

> HEARD ON CAPITOL HILL FOLKS!!!

> At a press conference on Monday September 8, a new virtual text program

on

> Pain Management was introduced to the media. It will be available in 2004

to

> medical students as an on-line text, free of charge. After speaking with

many

> people involved in the care and treatment of chronic pain patients, I can

tell

> you for a fact that it's NOT widely known in the medical community that

> chronic pain is, by far, one of the most under-treated if not un-treated

> illnesses in this country. Not enough docs know how to treat if, and

certainly

> too many docs are afraid to treat it. One of the speakers at the press

> conference was former Health and Human Services Secretary Dr. Louis

Sullivan

> who stated that " Untreated pain, tragically, is an epidemic in the United

> States " . Dr. Satcher, Former Surgeon General of the United States

told

> the group that " nearly 50 million Americans---almost one quarter of our

adult

> population---suffer from persistent pain. " " The social costs of pain also

can

> be staggering, reaching one-hundred billion dollars annually from, among

other

> causes, lost work days and unnecessary hospitalizations. " Dr. Jordan

Cohen,

> President of the Association of Medical Colleges stated, " If we are to

treat a

> future generation of pain patients, we must first educate the next

generation

> of doctors who will care for them. "

> And then of course, there was little ol' me...who spoke at the very

> beginning of the press conference to supposedly " put a face on chronic

> pain " ...at least that's how I was introduced!! Folks, let me tell you,

I've

> never been so scared yet so unbelievably motivated in my life!! After

speaking

> with several members on the Board of the American Pain Foundation after a

> rehearsal the night before the news conference, I realized that it's

people

> like us that they really want and need to hear from!! Many of them had

never

> even heard of Flatback Syndrome or HARMS, so besides telling them what

it's

> like to feel so frustrated looking for someone to treat my pain after

going

> through so many difficult surgeries, I also had the unique opportunity to

put

> FLATBACK SYNDROME/HARMS front and center in front of millions of people!!

The

> story was picked up by the AP and Reuters news wires and I also gave

one-on-

> one interviews to CNN, MSNBC, FOXNews, and several local (D.C.)reporters.

In

> every interview I talked about Flatback and it's " first cousin " , PAIN!!

> I was in D.C. at the invitation of Perdue/Pharma (the manufacturers of

> Oxycontin...it having been the subject of plenty of BAD press in recent

> years). They have hired a PR firm in D.C. to get some GOOD press on

Oxycontin.

> I have been on Oxycontin CR for 18 months and they have been the best 18

> months I've had in a very long time. One thing I repeated over and over

(and

> over!!) again, in the press conference and in every interview I gave, was

> that " a person's quality of life is directly proportionate to their

> functionality and if you can't function, you have NO quality of life! " Too

> many medications I was prescribed over a 6 year period of time, (pre and

post

> revision surgery) made it impossible for me to function at all; I was

either

> too gorked to see and talk or too nauseated to leave the house. Oxycontin

CR

> was the first med I was EVER prescribed that did none of those things to

me.

> But even though it was Perdue who picked up the tab for me to stay in D.C.

for

> 3 days, NOT ONE PERSON EVER told me what to say or put words in my mouth

or on

> a piece of paper in front of me and I really respect them for that.

> The doc I FINALLY found to do my Pain Management is, of all things, a

> Primary Care physician who has taken continuing education courses on Pain

> Mgmt. He's the first doctor who ever had the courage to put me on

Oxtcontin

> and Neurontin as a pain mgmt. regime. I signed a " PAIN CONTRACT " with him

that

> basically stated I would not attempt to get drugs for pain from any other

> doctor; that I would only take the amount prescribed; that I would

honestly

> report any side effects immediately; and that if I missed/canceled more

than 2

> appointments in a one year period of time that I would be immediately

dropped

> from the pain program. After all the crap I had tolerated from other

doctors,

> even so-called Pain Management doctors,...everything from being told that

the

> pain was in my head and I needed a psychiatrist (which I saw to keep him

> happy! The psychiatrist took one look at my post-revision x-rays and said

" I

> think it's your doctor who needs to come see me! " )to being told that my

pain

> was due to menopause!! I'm guessing that there are many of you out there

> reading this who are saying to yourselves, " Oh my God, that's exactly what

> I've been told, too!! " Well take heart folks...there really are doctors

who

> don't think we're nuts or that we're all menopausal...I'm sure that's a

big

> relief to all you guys out there!!! The problem is finding one of them and

> getting good, reliable, treatment (which may or may not include opoids).

> Hopefully, the days of being unable to find treatment for chronic pain

are

> quickly coming to an end (I know...my mouth to God's ears!!). Just as it's

> been so difficult for many of us to find someone competent enough to treat

our

> Flatback, be it surgical or non-surgical, it's at least that difficult to

find

> someone to treat pain...be it pain from HARMS or cancer, or

whatever...PAIN IS

> PAIN!! The last 2 lines of my speech to the media...the 2 lines that have

been

> most quoted on FOX News, CNN, USA Today and several other news sources,

are

> these...

> " THAT'S WHY I'M THRILLED TO HEAR ABOUT THIS NEW INITIATIVE TO TEACH

FUTURE

> DOCTORS HOW TO TREAT CHRONIC PAIN. NO ONE SHOULD HAVE TO SUFFER LIKE I

DID. "

>

> By the way, the med student program is called TOP MED OR " TOPICS ON PAIN

> MEDICINE " . It is a comprehensive " virtual textbook " on the proper

treatment of

> patients of all ages suffering from different types of pain. It will be

made

> available free of charge to medical students across the country in 2004.

> Ideally, Pain Management will one day be a required course for all medical

> students, interns and residents. That day is fast approaching and I've

had

> the privilege of being included in on this ground-breaking work. I took

copies

> of many of the e-mails regarding pain and pain management or lack thereof,

> included on this web site, (taking GREAT care to make sure that no one's

e-

> mail address and/or name appeared anywhere on the printed copy) and passed

> them on to several doctors, medical school professors, pharmaceutical

> manufacturers reps and also to several senators and congress-people that

were

> present at the press conference. Some of your personal stories of pain and

> surgery really raised some eyebrows and got more than a few conversations

> going!!! As one of the Perdue folks said to me as I was getting in a car

to

> come back home... " I don't know how we'll ever be able to thank you for all

> you've done for us the past few days. You've put a face on the issue of

> chronic pain here on Capitol Hill; and you've even managed to get some of

> these people to quit talking and thinking only about themselves and start

> talking about you and all the people like you who suffer in silence every

day.

> They won't soon forget the face and voice you've put on chronic pain!! God

> bless you. " ... to which I replied, " No sir, thank you...FOR GIVING ME THE

> HONOR AND PRIVILEGE OF BEING ABLE TO HAVE A PLATFORM TO SPEAK FOR ALL THE

> PEOPLE LIKE ME. You've given us a chance to be heard on Capitol Hill for

the

> first time. "

> SO THANKS TO ALL OF YOU!!! THANKS FOR ALL YOUR INPUT AND SUPPORT ON

THIS

> SUBJECT!! I won't give up our fight...I've only just begun to get people

to

> listen to me.

>

> All the best,

> Beth

>

> P.S. Anyone looking for a physician and/or Pain Management program in

their

> area should check out the following web sites:

>

> The American Board of Pain Medicine www.abpm.org

> The American Pain Foundation www.painfoundation.org

>

>

>

>

> Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

>

>

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Wow, Beth,

As tears fall into my coffee while reading this, I thank you from

the bottom of my heart! Please let us know if you hear any of those

interviews show up on camera!!!! Thanks for the links also!

M. in Texas

> Carol,

> I've just returned from a very enlightening few days in

Washington, D.C. on

> this very subject...Pain Management and where to find it. It was

an exciting

> few days to say the least and I'm pleased to report that OUR

VOICES ARE BEING

> HEARD ON CAPITOL HILL FOLKS!!!

> At a press conference on Monday September 8, a new virtual text

program on

> Pain Management was introduced to the media. It will be available

in 2004 to

> medical students as an on-line text, free of charge. After

speaking with many

> people involved in the care and treatment of chronic pain

patients, I can tell

> you for a fact that it's NOT widely known in the medical community

that

> chronic pain is, by far, one of the most under-treated if not un-

treated

> illnesses in this country. Not enough docs know how to treat if,

and certainly

> too many docs are afraid to treat it. One of the speakers at the

press

> conference was former Health and Human Services Secretary Dr.

Louis Sullivan

> who stated that " Untreated pain, tragically, is an epidemic in the

United

> States " . Dr. Satcher, Former Surgeon General of the United

States told

> the group that " nearly 50 million Americans---almost one quarter

of our adult

> population---suffer from persistent pain. " " The social costs of

pain also can

> be staggering, reaching one-hundred billion dollars annually from,

among other

> causes, lost work days and unnecessary hospitalizations. " Dr.

Jordan Cohen,

> President of the Association of Medical Colleges stated, " If we

are to treat a

> future generation of pain patients, we must first educate the next

generation

> of doctors who will care for them. "

> And then of course, there was little ol' me...who spoke at the

very

> beginning of the press conference to supposedly " put a face on

chronic

> pain " ...at least that's how I was introduced!! Folks, let me tell

you, I've

> never been so scared yet so unbelievably motivated in my life!!

After speaking

> with several members on the Board of the American Pain Foundation

after a

> rehearsal the night before the news conference, I realized that

it's people

> like us that they really want and need to hear from!! Many of them

had never

> even heard of Flatback Syndrome or HARMS, so besides telling them

what it's

> like to feel so frustrated looking for someone to treat my pain

after going

> through so many difficult surgeries, I also had the unique

opportunity to put

> FLATBACK SYNDROME/HARMS front and center in front of millions of

people!! The

> story was picked up by the AP and Reuters news wires and I also

gave one-on-

> one interviews to CNN, MSNBC, FOXNews, and several local (D.C.)

reporters. In

> every interview I talked about Flatback and it's " first cousin " ,

PAIN!!

> I was in D.C. at the invitation of Perdue/Pharma (the

manufacturers of

> Oxycontin...it having been the subject of plenty of BAD press in

recent

> years). They have hired a PR firm in D.C. to get some GOOD press

on Oxycontin.

> I have been on Oxycontin CR for 18 months and they have been the

best 18

> months I've had in a very long time. One thing I repeated over and

over (and

> over!!) again, in the press conference and in every interview I

gave, was

> that " a person's quality of life is directly proportionate to

their

> functionality and if you can't function, you have NO quality of

life! " Too

> many medications I was prescribed over a 6 year period of time,

(pre and post

> revision surgery) made it impossible for me to function at all; I

was either

> too gorked to see and talk or too nauseated to leave the house.

Oxycontin CR

> was the first med I was EVER prescribed that did none of those

things to me.

> But even though it was Perdue who picked up the tab for me to stay

in D.C. for

> 3 days, NOT ONE PERSON EVER told me what to say or put words in my

mouth or on

> a piece of paper in front of me and I really respect them for that.

> The doc I FINALLY found to do my Pain Management is, of all

things, a

> Primary Care physician who has taken continuing education courses

on Pain

> Mgmt. He's the first doctor who ever had the courage to put me on

Oxtcontin

> and Neurontin as a pain mgmt. regime. I signed a " PAIN CONTRACT "

with him that

> basically stated I would not attempt to get drugs for pain from

any other

> doctor; that I would only take the amount prescribed; that I would

honestly

> report any side effects immediately; and that if I missed/canceled

more than 2

> appointments in a one year period of time that I would be

immediately dropped

> from the pain program. After all the crap I had tolerated from

other doctors,

> even so-called Pain Management doctors,...everything from being

told that the

> pain was in my head and I needed a psychiatrist (which I saw to

keep him

> happy! The psychiatrist took one look at my post-revision x-rays

and said " I

> think it's your doctor who needs to come see me! " )to being told

that my pain

> was due to menopause!! I'm guessing that there are many of you out

there

> reading this who are saying to yourselves, " Oh my God, that's

exactly what

> I've been told, too!! " Well take heart folks...there really are

doctors who

> don't think we're nuts or that we're all menopausal...I'm sure

that's a big

> relief to all you guys out there!!! The problem is finding one of

them and

> getting good, reliable, treatment (which may or may not include

opoids).

> Hopefully, the days of being unable to find treatment for

chronic pain are

> quickly coming to an end (I know...my mouth to God's ears!!). Just

as it's

> been so difficult for many of us to find someone competent enough

to treat our

> Flatback, be it surgical or non-surgical, it's at least that

difficult to find

> someone to treat pain...be it pain from HARMS or cancer, or

whatever...PAIN IS

> PAIN!! The last 2 lines of my speech to the media...the 2 lines

that have been

> most quoted on FOX News, CNN, USA Today and several other news

sources, are

> these...

> " THAT'S WHY I'M THRILLED TO HEAR ABOUT THIS NEW INITIATIVE TO

TEACH FUTURE

> DOCTORS HOW TO TREAT CHRONIC PAIN. NO ONE SHOULD HAVE TO SUFFER

LIKE I DID. "

>

> By the way, the med student program is called TOP MED OR " TOPICS

ON PAIN

> MEDICINE " . It is a comprehensive " virtual textbook " on the proper

treatment of

> patients of all ages suffering from different types of pain. It

will be made

> available free of charge to medical students across the country in

2004.

> Ideally, Pain Management will one day be a required course for all

medical

> students, interns and residents. That day is fast approaching and

I've had

> the privilege of being included in on this ground-breaking work. I

took copies

> of many of the e-mails regarding pain and pain management or lack

thereof,

> included on this web site, (taking GREAT care to make sure that no

one's e-

> mail address and/or name appeared anywhere on the printed copy)

and passed

> them on to several doctors, medical school professors,

pharmaceutical

> manufacturers reps and also to several senators and congress-

people that were

> present at the press conference. Some of your personal stories of

pain and

> surgery really raised some eyebrows and got more than a few

conversations

> going!!! As one of the Perdue folks said to me as I was getting in

a car to

> come back home... " I don't know how we'll ever be able to thank you

for all

> you've done for us the past few days. You've put a face on the

issue of

> chronic pain here on Capitol Hill; and you've even managed to get

some of

> these people to quit talking and thinking only about themselves

and start

> talking about you and all the people like you who suffer in

silence every day.

> They won't soon forget the face and voice you've put on chronic

pain!! God

> bless you. " ... to which I replied, " No sir, thank you...FOR GIVING

ME THE

> HONOR AND PRIVILEGE OF BEING ABLE TO HAVE A PLATFORM TO SPEAK FOR

ALL THE

> PEOPLE LIKE ME. You've given us a chance to be heard on Capitol

Hill for the

> first time. "

> SO THANKS TO ALL OF YOU!!! THANKS FOR ALL YOUR INPUT AND

SUPPORT ON THIS

> SUBJECT!! I won't give up our fight...I've only just begun to get

people to

> listen to me.

>

> All the best,

> Beth

>

> P.S. Anyone looking for a physician and/or Pain Management program

in their

> area should check out the following web sites:

>

> The American Board of Pain Medicine www.abpm.org

> The American Pain Foundation www.painfoundation.org

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Share on other sites

WOW, Beth! What an experience. Good job, and thank you.

Do you know if any of the coverage will be repeated on cable TV?

Re: mission

Carol,

I've just returned from a very enlightening few days in Washington, D.C. on

this very subject...Pain Management and where to find it. It was an exciting

few days to say the least and I'm pleased to report that OUR VOICES ARE BEING

HEARD ON CAPITOL HILL FOLKS!!!

At a press conference on Monday September 8, a new virtual text program on

Pain Management was introduced to the media. It will be available in 2004 to

medical students as an on-line text, free of charge. After speaking with many

people involved in the care and treatment of chronic pain patients, I can tell

you for a fact that it's NOT widely known in the medical community that

chronic pain is, by far, one of the most under-treated if not un-treated

illnesses in this country. Not enough docs know how to treat if, and certainly

too many docs are afraid to treat it. One of the speakers at the press

conference was former Health and Human Services Secretary Dr. Louis Sullivan

who stated that " Untreated pain, tragically, is an epidemic in the United

States " . Dr. Satcher, Former Surgeon General of the United States told

the group that " nearly 50 million Americans---almost one quarter of our adult

population---suffer from persistent pain. " " The social costs of pain also can

be staggering, reaching one-hundred billion dollars annually from, among other

causes, lost work days and unnecessary hospitalizations. " Dr. Jordan Cohen,

President of the Association of Medical Colleges stated, " If we are to treat a

future generation of pain patients, we must first educate the next generation

of doctors who will care for them. "

And then of course, there was little ol' me...who spoke at the very

beginning of the press conference to supposedly " put a face on chronic

pain " ...at least that's how I was introduced!! Folks, let me tell you, I've

never been so scared yet so unbelievably motivated in my life!! After speaking

with several members on the Board of the American Pain Foundation after a

rehearsal the night before the news conference, I realized that it's people

like us that they really want and need to hear from!! Many of them had never

even heard of Flatback Syndrome or HARMS, so besides telling them what it's

like to feel so frustrated looking for someone to treat my pain after going

through so many difficult surgeries, I also had the unique opportunity to put

FLATBACK SYNDROME/HARMS front and center in front of millions of people!! The

story was picked up by the AP and Reuters news wires and I also gave one-on-

one interviews to CNN, MSNBC, FOXNews, and several local (D.C.)reporters. In

every interview I talked about Flatback and it's " first cousin " , PAIN!!

I was in D.C. at the invitation of Perdue/Pharma (the manufacturers of

Oxycontin...it having been the subject of plenty of BAD press in recent

years). They have hired a PR firm in D.C. to get some GOOD press on Oxycontin.

I have been on Oxycontin CR for 18 months and they have been the best 18

months I've had in a very long time. One thing I repeated over and over (and

over!!) again, in the press conference and in every interview I gave, was

that " a person's quality of life is directly proportionate to their

functionality and if you can't function, you have NO quality of life! " Too

many medications I was prescribed over a 6 year period of time, (pre and post

revision surgery) made it impossible for me to function at all; I was either

too gorked to see and talk or too nauseated to leave the house. Oxycontin CR

was the first med I was EVER prescribed that did none of those things to me.

But even though it was Perdue who picked up the tab for me to stay in D.C. for

3 days, NOT ONE PERSON EVER told me what to say or put words in my mouth or on

a piece of paper in front of me and I really respect them for that.

The doc I FINALLY found to do my Pain Management is, of all things, a

Primary Care physician who has taken continuing education courses on Pain

Mgmt. He's the first doctor who ever had the courage to put me on Oxtcontin

and Neurontin as a pain mgmt. regime. I signed a " PAIN CONTRACT " with him that

basically stated I would not attempt to get drugs for pain from any other

doctor; that I would only take the amount prescribed; that I would honestly

report any side effects immediately; and that if I missed/canceled more than 2

appointments in a one year period of time that I would be immediately dropped

from the pain program. After all the crap I had tolerated from other doctors,

even so-called Pain Management doctors,...everything from being told that the

pain was in my head and I needed a psychiatrist (which I saw to keep him

happy! The psychiatrist took one look at my post-revision x-rays and said " I

think it's your doctor who needs to come see me! " )to being told that my pain

was due to menopause!! I'm guessing that there are many of you out there

reading this who are saying to yourselves, " Oh my God, that's exactly what

I've been told, too!! " Well take heart folks...there really are doctors who

don't think we're nuts or that we're all menopausal...I'm sure that's a big

relief to all you guys out there!!! The problem is finding one of them and

getting good, reliable, treatment (which may or may not include opoids).

Hopefully, the days of being unable to find treatment for chronic pain are

quickly coming to an end (I know...my mouth to God's ears!!). Just as it's

been so difficult for many of us to find someone competent enough to treat our

Flatback, be it surgical or non-surgical, it's at least that difficult to find

someone to treat pain...be it pain from HARMS or cancer, or whatever...PAIN IS

PAIN!! The last 2 lines of my speech to the media...the 2 lines that have been

most quoted on FOX News, CNN, USA Today and several other news sources, are

these...

" THAT'S WHY I'M THRILLED TO HEAR ABOUT THIS NEW INITIATIVE TO TEACH FUTURE

DOCTORS HOW TO TREAT CHRONIC PAIN. NO ONE SHOULD HAVE TO SUFFER LIKE I DID. "

By the way, the med student program is called TOP MED OR " TOPICS ON PAIN

MEDICINE " . It is a comprehensive " virtual textbook " on the proper treatment of

patients of all ages suffering from different types of pain. It will be made

available free of charge to medical students across the country in 2004.

Ideally, Pain Management will one day be a required course for all medical

students, interns and residents. That day is fast approaching and I've had

the privilege of being included in on this ground-breaking work. I took copies

of many of the e-mails regarding pain and pain management or lack thereof,

included on this web site, (taking GREAT care to make sure that no one's e-

mail address and/or name appeared anywhere on the printed copy) and passed

them on to several doctors, medical school professors, pharmaceutical

manufacturers reps and also to several senators and congress-people that were

present at the press conference. Some of your personal stories of pain and

surgery really raised some eyebrows and got more than a few conversations

going!!! As one of the Perdue folks said to me as I was getting in a car to

come back home... " I don't know how we'll ever be able to thank you for all

you've done for us the past few days. You've put a face on the issue of

chronic pain here on Capitol Hill; and you've even managed to get some of

these people to quit talking and thinking only about themselves and start

talking about you and all the people like you who suffer in silence every day.

They won't soon forget the face and voice you've put on chronic pain!! God

bless you. " ... to which I replied, " No sir, thank you...FOR GIVING ME THE

HONOR AND PRIVILEGE OF BEING ABLE TO HAVE A PLATFORM TO SPEAK FOR ALL THE

PEOPLE LIKE ME. You've given us a chance to be heard on Capitol Hill for the

first time. "

SO THANKS TO ALL OF YOU!!! THANKS FOR ALL YOUR INPUT AND SUPPORT ON THIS

SUBJECT!! I won't give up our fight...I've only just begun to get people to

listen to me.

All the best,

Beth

P.S. Anyone looking for a physician and/or Pain Management program in their

area should check out the following web sites:

The American Board of Pain Medicine www.abpm.org

The American Pain Foundation www.painfoundation.org

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You done good, Beth.

Thanks for giving us such a thorough and detailed account of the meeting.

Re: mission

Carol,

I've just returned from a very enlightening few days in Washington, D.C. on

this very subject...Pain Management and where to find it. It was an exciting

few days to say the least and I'm pleased to report that OUR VOICES ARE BEING

HEARD ON CAPITOL HILL FOLKS!!!

At a press conference on Monday September 8, a new virtual text program on

Pain Management was introduced to the media. It will be available in 2004 to

medical students as an on-line text, free of charge. After speaking with many

people involved in the care and treatment of chronic pain patients, I can tell

you for a fact that it's NOT widely known in the medical community that

chronic pain is, by far, one of the most under-treated if not un-treated

illnesses in this country. Not enough docs know how to treat if, and certainly

too many docs are afraid to treat it. One of the speakers at the press

conference was former Health and Human Services Secretary Dr. Louis Sullivan

who stated that " Untreated pain, tragically, is an epidemic in the United

States " . Dr. Satcher, Former Surgeon General of the United States told

the group that " nearly 50 million Americans---almost one quarter of our adult

population---suffer from persistent pain. " " The social costs of pain also can

be staggering, reaching one-hundred billion dollars annually from, among other

causes, lost work days and unnecessary hospitalizations. " Dr. Jordan Cohen,

President of the Association of Medical Colleges stated, " If we are to treat a

future generation of pain patients, we must first educate the next generation

of doctors who will care for them. "

And then of course, there was little ol' me...who spoke at the very

beginning of the press conference to supposedly " put a face on chronic

pain " ...at least that's how I was introduced!! Folks, let me tell you, I've

never been so scared yet so unbelievably motivated in my life!! After speaking

with several members on the Board of the American Pain Foundation after a

rehearsal the night before the news conference, I realized that it's people

like us that they really want and need to hear from!! Many of them had never

even heard of Flatback Syndrome or HARMS, so besides telling them what it's

like to feel so frustrated looking for someone to treat my pain after going

through so many difficult surgeries, I also had the unique opportunity to put

FLATBACK SYNDROME/HARMS front and center in front of millions of people!! The

story was picked up by the AP and Reuters news wires and I also gave one-on-

one interviews to CNN, MSNBC, FOXNews, and several local (D.C.)reporters. In

every interview I talked about Flatback and it's " first cousin " , PAIN!!

I was in D.C. at the invitation of Perdue/Pharma (the manufacturers of

Oxycontin...it having been the subject of plenty of BAD press in recent

years). They have hired a PR firm in D.C. to get some GOOD press on Oxycontin.

I have been on Oxycontin CR for 18 months and they have been the best 18

months I've had in a very long time. One thing I repeated over and over (and

over!!) again, in the press conference and in every interview I gave, was

that " a person's quality of life is directly proportionate to their

functionality and if you can't function, you have NO quality of life! " Too

many medications I was prescribed over a 6 year period of time, (pre and post

revision surgery) made it impossible for me to function at all; I was either

too gorked to see and talk or too nauseated to leave the house. Oxycontin CR

was the first med I was EVER prescribed that did none of those things to me.

But even though it was Perdue who picked up the tab for me to stay in D.C. for

3 days, NOT ONE PERSON EVER told me what to say or put words in my mouth or on

a piece of paper in front of me and I really respect them for that.

The doc I FINALLY found to do my Pain Management is, of all things, a

Primary Care physician who has taken continuing education courses on Pain

Mgmt. He's the first doctor who ever had the courage to put me on Oxtcontin

and Neurontin as a pain mgmt. regime. I signed a " PAIN CONTRACT " with him that

basically stated I would not attempt to get drugs for pain from any other

doctor; that I would only take the amount prescribed; that I would honestly

report any side effects immediately; and that if I missed/canceled more than 2

appointments in a one year period of time that I would be immediately dropped

from the pain program. After all the crap I had tolerated from other doctors,

even so-called Pain Management doctors,...everything from being told that the

pain was in my head and I needed a psychiatrist (which I saw to keep him

happy! The psychiatrist took one look at my post-revision x-rays and said " I

think it's your doctor who needs to come see me! " )to being told that my pain

was due to menopause!! I'm guessing that there are many of you out there

reading this who are saying to yourselves, " Oh my God, that's exactly what

I've been told, too!! " Well take heart folks...there really are doctors who

don't think we're nuts or that we're all menopausal...I'm sure that's a big

relief to all you guys out there!!! The problem is finding one of them and

getting good, reliable, treatment (which may or may not include opoids).

Hopefully, the days of being unable to find treatment for chronic pain are

quickly coming to an end (I know...my mouth to God's ears!!). Just as it's

been so difficult for many of us to find someone competent enough to treat our

Flatback, be it surgical or non-surgical, it's at least that difficult to find

someone to treat pain...be it pain from HARMS or cancer, or whatever...PAIN IS

PAIN!! The last 2 lines of my speech to the media...the 2 lines that have been

most quoted on FOX News, CNN, USA Today and several other news sources, are

these...

" THAT'S WHY I'M THRILLED TO HEAR ABOUT THIS NEW INITIATIVE TO TEACH FUTURE

DOCTORS HOW TO TREAT CHRONIC PAIN. NO ONE SHOULD HAVE TO SUFFER LIKE I DID. "

By the way, the med student program is called TOP MED OR " TOPICS ON PAIN

MEDICINE " . It is a comprehensive " virtual textbook " on the proper treatment of

patients of all ages suffering from different types of pain. It will be made

available free of charge to medical students across the country in 2004.

Ideally, Pain Management will one day be a required course for all medical

students, interns and residents. That day is fast approaching and I've had

the privilege of being included in on this ground-breaking work. I took copies

of many of the e-mails regarding pain and pain management or lack thereof,

included on this web site, (taking GREAT care to make sure that no one's e-

mail address and/or name appeared anywhere on the printed copy) and passed

them on to several doctors, medical school professors, pharmaceutical

manufacturers reps and also to several senators and congress-people that were

present at the press conference. Some of your personal stories of pain and

surgery really raised some eyebrows and got more than a few conversations

going!!! As one of the Perdue folks said to me as I was getting in a car to

come back home... " I don't know how we'll ever be able to thank you for all

you've done for us the past few days. You've put a face on the issue of

chronic pain here on Capitol Hill; and you've even managed to get some of

these people to quit talking and thinking only about themselves and start

talking about you and all the people like you who suffer in silence every day.

They won't soon forget the face and voice you've put on chronic pain!! God

bless you. " ... to which I replied, " No sir, thank you...FOR GIVING ME THE

HONOR AND PRIVILEGE OF BEING ABLE TO HAVE A PLATFORM TO SPEAK FOR ALL THE

PEOPLE LIKE ME. You've given us a chance to be heard on Capitol Hill for the

first time. "

SO THANKS TO ALL OF YOU!!! THANKS FOR ALL YOUR INPUT AND SUPPORT ON THIS

SUBJECT!! I won't give up our fight...I've only just begun to get people to

listen to me.

All the best,

Beth

P.S. Anyone looking for a physician and/or Pain Management program in their

area should check out the following web sites:

The American Board of Pain Medicine www.abpm.org

The American Pain Foundation www.painfoundation.org

Link to comment
Share on other sites

Wow Beth,

What a great experience for you and what an unbelievable great job you did

for us, who were waiting here, cheering you on. You did an amazing job, and

I don't even have the words to say, except

" Thank you Beth, I know everyone here appreciates what you're doing as much

as I do!

Keep up the good work!

Deb

>From: bunce1117@...

>Reply-

>

>Subject: Re: mission

>Date: Mon, 15 Sep 2003 01:17:36 +0000

>

>Carol,

> I've just returned from a very enlightening few days in Washington, D.C.

>on

>this very subject...Pain Management and where to find it. It was an

>exciting

>few days to say the least and I'm pleased to report that OUR VOICES ARE

>BEING

>HEARD ON CAPITOL HILL FOLKS!!!

> At a press conference on Monday September 8, a new virtual text program

>on

>Pain Management was introduced to the media. It will be available in 2004

>to

>medical students as an on-line text, free of charge. After speaking with

>many

>people involved in the care and treatment of chronic pain patients, I can

>tell

>you for a fact that it's NOT widely known in the medical community that

>chronic pain is, by far, one of the most under-treated if not un-treated

>illnesses in this country. Not enough docs know how to treat if, and

>certainly

>too many docs are afraid to treat it. One of the speakers at the press

>conference was former Health and Human Services Secretary Dr. Louis

>Sullivan

>who stated that " Untreated pain, tragically, is an epidemic in the United

>States " . Dr. Satcher, Former Surgeon General of the United States

>told

>the group that " nearly 50 million Americans---almost one quarter of our

>adult

>population---suffer from persistent pain. " " The social costs of pain also

>can

>be staggering, reaching one-hundred billion dollars annually from, among

>other

>causes, lost work days and unnecessary hospitalizations. " Dr. Jordan Cohen,

>President of the Association of Medical Colleges stated, " If we are to

>treat a

>future generation of pain patients, we must first educate the next

>generation

>of doctors who will care for them. "

> And then of course, there was little ol' me...who spoke at the very

>beginning of the press conference to supposedly " put a face on chronic

>pain " ...at least that's how I was introduced!! Folks, let me tell you, I've

>never been so scared yet so unbelievably motivated in my life!! After

>speaking

>with several members on the Board of the American Pain Foundation after a

>rehearsal the night before the news conference, I realized that it's people

>like us that they really want and need to hear from!! Many of them had

>never

>even heard of Flatback Syndrome or HARMS, so besides telling them what it's

>like to feel so frustrated looking for someone to treat my pain after going

>through so many difficult surgeries, I also had the unique opportunity to

>put

>FLATBACK SYNDROME/HARMS front and center in front of millions of people!!

>The

>story was picked up by the AP and Reuters news wires and I also gave

>one-on-

>one interviews to CNN, MSNBC, FOXNews, and several local (D.C.)reporters.

>In

>every interview I talked about Flatback and it's " first cousin " , PAIN!!

> I was in D.C. at the invitation of Perdue/Pharma (the manufacturers of

>Oxycontin...it having been the subject of plenty of BAD press in recent

>years). They have hired a PR firm in D.C. to get some GOOD press on

>Oxycontin.

>I have been on Oxycontin CR for 18 months and they have been the best 18

>months I've had in a very long time. One thing I repeated over and over

>(and

>over!!) again, in the press conference and in every interview I gave, was

>that " a person's quality of life is directly proportionate to their

>functionality and if you can't function, you have NO quality of life! " Too

>many medications I was prescribed over a 6 year period of time, (pre and

>post

>revision surgery) made it impossible for me to function at all; I was

>either

>too gorked to see and talk or too nauseated to leave the house. Oxycontin

>CR

>was the first med I was EVER prescribed that did none of those things to

>me.

>But even though it was Perdue who picked up the tab for me to stay in D.C.

>for

>3 days, NOT ONE PERSON EVER told me what to say or put words in my mouth or

>on

>a piece of paper in front of me and I really respect them for that.

> The doc I FINALLY found to do my Pain Management is, of all things, a

>Primary Care physician who has taken continuing education courses on Pain

>Mgmt. He's the first doctor who ever had the courage to put me on Oxtcontin

>and Neurontin as a pain mgmt. regime. I signed a " PAIN CONTRACT " with him

>that

>basically stated I would not attempt to get drugs for pain from any other

>doctor; that I would only take the amount prescribed; that I would honestly

>report any side effects immediately; and that if I missed/canceled more

>than 2

>appointments in a one year period of time that I would be immediately

>dropped

>from the pain program. After all the crap I had tolerated from other

>doctors,

>even so-called Pain Management doctors,...everything from being told that

>the

>pain was in my head and I needed a psychiatrist (which I saw to keep him

>happy! The psychiatrist took one look at my post-revision x-rays and said

> " I

>think it's your doctor who needs to come see me! " )to being told that my

>pain

>was due to menopause!! I'm guessing that there are many of you out there

>reading this who are saying to yourselves, " Oh my God, that's exactly what

>I've been told, too!! " Well take heart folks...there really are doctors who

>don't think we're nuts or that we're all menopausal...I'm sure that's a big

>relief to all you guys out there!!! The problem is finding one of them and

>getting good, reliable, treatment (which may or may not include opoids).

> Hopefully, the days of being unable to find treatment for chronic pain

>are

>quickly coming to an end (I know...my mouth to God's ears!!). Just as it's

>been so difficult for many of us to find someone competent enough to treat

>our

>Flatback, be it surgical or non-surgical, it's at least that difficult to

>find

>someone to treat pain...be it pain from HARMS or cancer, or whatever...PAIN

>IS

>PAIN!! The last 2 lines of my speech to the media...the 2 lines that have

>been

>most quoted on FOX News, CNN, USA Today and several other news sources, are

>these...

> " THAT'S WHY I'M THRILLED TO HEAR ABOUT THIS NEW INITIATIVE TO TEACH

>FUTURE

>DOCTORS HOW TO TREAT CHRONIC PAIN. NO ONE SHOULD HAVE TO SUFFER LIKE I

>DID. "

>

> By the way, the med student program is called TOP MED OR " TOPICS ON PAIN

>MEDICINE " . It is a comprehensive " virtual textbook " on the proper treatment

>of

>patients of all ages suffering from different types of pain. It will be

>made

>available free of charge to medical students across the country in 2004.

>Ideally, Pain Management will one day be a required course for all medical

>students, interns and residents. That day is fast approaching and I've had

>the privilege of being included in on this ground-breaking work. I took

>copies

>of many of the e-mails regarding pain and pain management or lack thereof,

>included on this web site, (taking GREAT care to make sure that no one's e-

>mail address and/or name appeared anywhere on the printed copy) and passed

>them on to several doctors, medical school professors, pharmaceutical

>manufacturers reps and also to several senators and congress-people that

>were

>present at the press conference. Some of your personal stories of pain and

>surgery really raised some eyebrows and got more than a few conversations

>going!!! As one of the Perdue folks said to me as I was getting in a car to

>come back home... " I don't know how we'll ever be able to thank you for all

>you've done for us the past few days. You've put a face on the issue of

>chronic pain here on Capitol Hill; and you've even managed to get some of

>these people to quit talking and thinking only about themselves and start

>talking about you and all the people like you who suffer in silence every

>day.

>They won't soon forget the face and voice you've put on chronic pain!! God

>bless you. " ... to which I replied, " No sir, thank you...FOR GIVING ME THE

>HONOR AND PRIVILEGE OF BEING ABLE TO HAVE A PLATFORM TO SPEAK FOR ALL THE

>PEOPLE LIKE ME. You've given us a chance to be heard on Capitol Hill for

>the

>first time. "

> SO THANKS TO ALL OF YOU!!! THANKS FOR ALL YOUR INPUT AND SUPPORT ON

>THIS

>SUBJECT!! I won't give up our fight...I've only just begun to get people to

>listen to me.

>

>All the best,

>Beth

>

>P.S. Anyone looking for a physician and/or Pain Management program in their

>area should check out the following web sites:

>

>The American Board of Pain Medicine www.abpm.org

>The American Pain Foundation www.painfoundation.org

>

>

_________________________________________________________________

Need more e-mail storage? Get 10MB with Hotmail Extra Storage.

http://join.msn.com/?PAGE=features/es

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Sharon,

Can't say for sure when any of the broadcasts will be aired. I also taped an

interview (technically called a VNR or Video News Release) from here at my

home for a crew from New Jersey. That piece is being edited this week for

cable broadcast sometime this month...September is, for those who are unaware

like I was until all this happened, is National Pain Awareness month...that's

why the push to do all this ASAP to get it aired. I will be contacted by the

NJ crew when that is going to be aired and let you all know...for those who

might be curious as to " Just who the heck is this woman talking about pain and

Flatback??!! " Thanks for the interest.

All the best,

Beth

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In a message dated 9/15/03 4:43:39 PM Eastern Daylight Time,

bunce1117@... writes:

> I will be contacted by the

> NJ crew when that is going to be aired and let you all know...for those who

> might be curious as to " Just who the heck is this woman talking about pain

> and

> Flatback??!! " Thanks for the interest.

>

I'd like to see this program Please let us know when it'll be shown if they

do notify you. NJ has a cable channel news #12 and on the weekends at 12 noon

they broadcast a medical info 1/2 hour. They also broadcast ofther medical

spots during the week. It would be great to have info given on the air to

educate everyone!

Thank you for what you're doing!

June

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  • 1 year later...
Guest guest

DEAR FRED, I wish you would not remove your name from this list serve. I think

we need

more people to share their experiences. If you leave, we have one less person to

inform us

of how treatments have worked and how the disease develops. I urge you to

ignore the

input that you do not find helpful, but stay here because we all need you.

Carolyn Swift,

age 78, Dx 9/04, IVIG March and April 05, asymptomatic except for cough, which

may or

may not be related.

> ,

>

> With great enthusiasm I joined your SLL-CLL listserve hoping both to learn

more about

my disease and to occasionally list my experiences with the hope they might

prove of

some value to others.

>

> Unfortunately, this platform too often has become all but a monologue of

verbose,

redundant bloviations from one source who has posted almost a dozen times in the

last

four days alone. In order to show respect for my fellow patients, I try to read

every word

that is posted on your list. But that is no longer possible as much of what this

person

writes is either inane, self-serving - or worse. He really ought to start his

own listserve

and see how many folks will volunteer to read his musings.

>

> , thank you sincerely for all you've done and are doing. May you whip the

beast in

short order. Please remove my name from you mailing list.

>

> Fred Hummel, 78, Arcata, CA;

> CLL/SLL dx 1.98;

> Fludara 2000;

> Fludara, Rituxan, Novantrone, Decadron, 2002;

> Rituxan, 2004;

> Rituxan, Chlorambucil, Prednisone, 2005.

>

>

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