>----- Original Message -----
From: Bernie and Beverly Doucette <bnb@cybrzn.com>
To: Multiple recipients of list ADHESIONS <adhesions@mail.medispecialty.com>
Sent: Monday, July 03, 2000 7:26 PM
Subject: Re: Dateline - Feature on Chronic Pelvic Pain
> My dear Helen..
> I never, ever mind anything you do with my emails...and by gully, they do
> look might nice when you get done with them...;-)
>
> I am getting your video and op reports preared for mail...all that needs
to
> get done is ..of all things, the postage..and guess what tomorow is...yup,
> all post offices closed, so please be assured that your file will be in
the
> mail on Wednesday, unless Uncle Sam elects to give the postal workers an
> extra day off..and you can bet they won't get any arguements from
ME..anyone
> but a postal worker...!!! ;-)
> Thank-you for your help on that email
>
> Love Bev
>
> The count down to meeting Mary has begun..she will be arriving at 2pm on
> Thursday..I have a small group prepared to meet her with American Flags
and
> flowers!!!! Just went to radio Shack to pick up my German translator
> calculator, and it was he wrong one...I will not run around with a silly
> little translation book in this day and age...well, unless I have to that
> is!!!!!! :-)
> Love Bev
>> ----- Original Message -----
> From: Helen Dynda <olddad66@runestone.net>
> To: Multiple recipients of list ADHESIONS
<adhesions@mail.medispecialty.com>
> Sent: Monday, July 03, 2000 5:46 PM
> Subject: Dateline - Feature on Chronic Pelvic Pain
>
> > [ NOTE: Bev. I hope you don't mind that I have tried to make your
> > message easier to read. I do not understand why some messages do not
> > fit within the Message box. Well, here is hoping that Bev's message
> > will be easier to read. ]
> >
> > ~ ~ ~ ~
> >
> > >At Mon, 3 Jul 2000, Bernie and Beverly Doucette wrote:
> >
> > Dear Anne and all:
> >
> > I have not only contacted Dateline more then once, I had also forwarded
> > my own adhesiolysis video from DR. Reich and my medical history with my
> > operative reports as evidence of my words and material; and I received
> > everything back with a letter stating they were not interested in this.
> >
> > I have also sent this same material to Dr. Nancy Snyderman of the "
> > Good Morning America " segment; again, returned unopened! Not even a
> > letter of explanation....yes, we hit Oprah, Jessie, all of them..and
> > more..nothing!!
> >
> > Karla Nygran and myself have forwarded ARD information, medical
> > histories and the associated substantiating medical reports everywhere.
> > NO national TV station touched it...but here in our area, TV 26 IS doing
> > a health series on ARD and has featured myself and Karla to date...They
> > will feature Mary of Canada when she arrives in Wisconsin this week.
> >
> > Now, I realized that we needed to come from a different angle IF we were
> > to get any mention of this disease out there...so Mary and I agreed to
> > be used as a " personal interest " story, as that is what TV
> > likes....human interest stories that touch lives and are uplifting, not
> > sad, bleak or , "angry," per se!
> >
> > Do you realize the impact this disease would have not only on surgeons
> > in America, but the health industry as we know it today?? Once this
> > disease gets public..it WILL change the medical industry as we know
> > it...consider this:
> >
> > Insurance company rates would go sky high due to the fact there is no
> > known cure and ARD is a disease requiring repetitive surgeries, unless
> > you were sent to a surgeon skilled in that area..you know, all two of
> > them in the USA!!! :-)
> >
> > An ARD sufferer would be subject to a pre-existing ailment clause unless
> > they waited at least a year between adhesiolysis procedures...and the
> > adhesiolysis procedure itself would have to be recognized for what it
> > should be..a lengthy, tedious surgery with very few surgeons capable of
> > performing it...and that would cost a pretty penny.
> >
> > The insurance companies sure don't want a person having not only more
> > surgeries but surgeries causing more damage in each surgery that will
> > increase the patients medical needs...and, of course, on and on and on,
> > nothing WE haven't been living forever. Insurance companies do not want
> > to " recognize " this disease for what it is, as they will have to
> > change everything to accommodate it...and do you really think that once
> > the insurance companies acknowledge ARD, they would be able to keep
> > costs down when dealing with it? How do you deal with ARD effectively
> > knowing what it really is..I mean, acknowledging that you know what it
> > REALLY is all about, and don't think they don't know ARD now!
> >
> > Surgeons....this one I find funny, so my friends just when you start to
> > feel angry at a past surgeon who screwed you up with making your ARD
> > worse..think of this!!
> >
> > Once the public is made aware that this disease lurks in EVERY operating
> > room in the world when an inter-abdominal procedure is being performed,
> > how many potential " elective " surgical patients might pull out of
> > their surgery for fear of ARD???
> >
> > If YOU had known what you know today regarding the etiology ( start of )
> > Adhesion Related Disease, would YOU have agreed to any " elective "
> > invasive surgical procedure? If that procedure was NOT elective, but
> > extremely warranted, would you have asked questions regarding ARD prior
> > to your pending surgery?
> >
> > What about a loved one who might " elect " a surgery now or in the
> > future? What would you educate them about ARD? Or your loved one needing
> > a surgery that is beyond their control, will you be right there asking
> > the surgeon questions regarding ARD??
> >
> > Say, for example, your daughter wanted a tubal legation, " elective "
> > ..and she starts to ask questions about ARD to the surgeon, might he
> > get a bit apprehensive?
> >
> > Or say, your daughter, or friend needed ( I mean really needed ) a
> > hysterectomy, and she questions the surgeon about ARD...and states that
> > he had better do everything in his power NOT to subject her to ARD in
> > that surgical procedure and she wants his guarantee on it...hmmm!
> >
> > Talk about anxiety... he would also have to be very skilled in his
> > cleanup after surgery as he knows she is educated in ARD and he must
> > produce...or else!! Talk about anxiety...and throw this in as well, have
> > her mention that she will secure all pre- and post-operative reports and
> > pathology reports to make sure ALL procedures were necessary!!
> >
> > Now, take just one hospital, your surgeon, on any given day and think
> > about how many invasive surgeries he/she might be scheduling? Some
> > warranted, some NOT warranted, but elective! After all, surgery is how
> > they make their money...surgery!! Right?
> >
> > Now, in comes a prospective surgical patient, hysterectomy no less, BUT
> > this time she has tons of questions regarding "ARD" as she talked to
> > someone who suffers with it and she is concerned about it..and she
> > really has learned her stuff...what might that surgeon do? Phone a
> > friend? Go 50/50? Or poll the audience? It cannot be " poll the audience
> > " as there is no audience due to confidentiality laws regarding patient
> > information...so that's out!! Keep in mind that if he doesn't deal with
> > this effectively, HE will lose a surgery and that means he will lose
> > $$$$!!! Not good for business!!
> >
> > I think he will do one of these four things:
> >
> > 1.) He could buffalo things and do the surgery and then just get rid of
> > her if she presents with pain as he knows adhesion symptoms might not
> > show up for a few weeks or months...and he would have time to make her
> > think she was nutty...and why would he care once he had his payments!!
> >
> > 2.) He could re-think the necessity of the surgery and then advise her
> > to get a second opinion as he may not be as qualified to perform this
> > specific surgery DUE to the potential problem of adhesions, and he is
> > VERY appreciative for bringing that issue to his attention...and then
> > not take her back as a patient for this surgery and probably any other
> > surgery as well!
> >
> > 3.) Tell her that there is no such thing as abdomina/pelvic adhesions
> > and that you can find anything on the Internet that you want to and then
> > twist that information all kinds of ways...or that HE has never
> > performed a surgery that resulted in adhesion formation, thus she has
> > nothing to worry about with him, ( all the while hoping that she is not
> > as smart as she appears and will buy that crap...and if she does, then
> > he can always revert to number one once the surgery is through...after
> > all, everyone has a " first time" you know!!! ) BUT, if she requests in
> > writing that he will perform a clot evacuation following the procedure
> > as well as the use of ringers solution in an attempt to thwart adhesion
> > formation, well, that will be a whole nether thing...he will probably
> > resort to number four...
> >
> > 4.) He might get angry, start to shout about patients not trusting their
> > surgeons, patients thinking they know more then their doctors because
> > they read stuff, and then they believe that stuff over the knowledge of
> > the Dr. and they get angry...and then simply suggest that as long as
> > you do not have trust in his practice, nor in his experience and
> > qualifications you should go find a surgeon who you can trust as he is
> > now deeply hurt by all these questions...so you leave feeling crappy and
> > wondering if you should simply shut up, take the chance of having your
> > life ruined and suffer pain the rest of your life...because he felt hurt
> > that you wanted to discuss something important with him...( and once
> > you're out his door, he will be wiping his brow and saying to himself, "
> > Man, that was a close call, glad I got rid of her because she knows to
> > much!!! " )...
> >
> > Why did I choose these four ways a surgeon might react to a patient who
> > mentions that word, " adhesions?" Because I have personally witnessed
> > all four reactions while advocating with ARD patients and their
> > surgeons!! Want to share any of YOUR surgeon's or Dr's reactions to that
> > word when presented to them by you??? Anyone??
> >
> > At the mention of ARD most surgeons will simply refer this " much too
> > educated patient" on to another surgeon or refer them on to someone else
> > simply because they know they have no way to control ARD from
> > occurring...and they know all too well that 99% of all inter-abdominal
> > surgeries will result in that " dirty " word..ADHESIONS!!
> >
> > Whoeww, I love to say that in front of a surgeon, it makes them
> > shudder...their whole face contorts!! Once I sneaked up behind a surgeon
> > here at our local hospital and said real loud, " Adhesions " and he ran
> > screaming down the hallway and out the door..never did return!!
> > Hmmmm...( Well, maybe that's not true, but I sure like the picture of
> > that happening!! )
> >
> > Don't be dismayed though, my friends...as we ARE changing the face of
> > medicine as practiced today regarding ARD....we are doing that right at
> > this very moment, if your reading this...EDUCATON & RESPONSIBILITY for
> > ones self and loved ones are making the difference and it will only grow
> > as more and more people hear the words, " Adhesion related Disease!!
> > "...
> >
> > Public awareness will make a difference...word of mouth will make a
> > difference. For every three people you educate, one of them will
> > encounter someone who has had surgery and suffers the symptoms of ARD,
> > or they will know someone who is facing an invasive surgery...and THEY
> > WILL start talking about ARD!! We may not get national TV coverage, but
> > we are making this disease known!!
> >
> > Two years ago there wasn't even anything on the web regarding ARD; in
> > fact, it didn't even have that name...there WAS no medical term for our
> > disease, only one simple medical term that wasn't discussed at all...and
> > I know that for a fact as I went to nursing school and had NEVER heard
> > of adhesions, let alone adhesions as a disease in and of itself!
> >
> > " Adhesion-Related Disease " came about through the IAS folks and was
> > and is being pushed down the throats of the medical society by all who
> > us who use it in discussions!!
> >
> > Now, take just one hospital, your surgeon, on any given day and think
> > about how many interabdominal surgeries he/she might be scheduling? Some
> > warranted, some NOT warranted, but elective! After all, surgery is how
> > they make their money...surgery!! Right?
> >
> > So, YOU start to spread the word about ARD, about YOUR disease, and you
> > educate three people, just three people who really understand the total
> > implications of what and why you're suffering, and you scare them with
> > the reality of ARD!! Do you think any or all of those three just might
> > think twice about a surgery, elective or not...do you think you might
> > have impacted their minds with the reality of how YOU got your ARD?
> >
> > I have NOT figured out how to tap into national syndicated TV...but I
> > have figured out how to spread the word to everyone who will listen, I
> > talk and talk and talk about it now. I write letters, Karla writes
> > letters. Karla and I have made up a brochure on ARD and it will go to
> > print once we have it all proof-read and right...and we have even been
> > handing them out pre-printed, meaning simply printed off of this
> > computor...we hand them out at health fairs, and any place else that we
> > may find an audience!!! We write to talk show hosts, in fact " Dehlilah
> > " read about Christina Buelteman's death from ARD on one of her
> > syndicated radio shows...
> >
> > I am thinking that one day, we will find a way to tap into these talk
> > shows...maybe to set up a meeting for all of us who have never met, and
> > those have reached out to one another across miles and miles...success
> > stories, human interest stories...positive stories to be shared
> > publically, nice cutsey ones, happy ones...and all the while...we are
> > discussing what we all have in common...
> > " Adhesion Related Disease!! "
> > So, that is what I think...( Bev laughing here as she knows that by the
> > grace of GOD one day it will be known!!! )
> >
>