Re: Trusting our doctors:Sally is RIGHT ON!

From: Kimmi&Dave (kimmi3@mediaone.net)
Wed Nov 21 10:22:40 2001


Hi, I have seen so many psychiatrist and you know what they tell me, You are reasonable depressed. Nice hon. Primarily though the doctors what you too see psychiatrists because living in chronic pain takes a huge toll on your mental condition. Almost everyone who lives with chronic pain is depressed. Depression causes more pain. Pain causes depression vicious cycle. So for all you are told they should meet with a phych. Most are not questioning if you are a crazy, they are concerned that you may not mentally be able to handle it. But believe it or not they say that chronic pain patients are very strong. Stronger than the normal person who has a bout of pain. Living with chronic pain is extremely difficult, I know I suffer with terrible depression and anxiety. If they got rid of the pain most likely my depression would go away. I have tried at least 10 different antidepressants to help with the depression and anxiety none of helped. Another thing is low dosages of anti depressants suppose to help with pain. Personally have not found this to be true for me, but some say it helps..Hugs hon Kimmi

>----- Original Message -----
From: "Ginny Halpern" <gingin99@home.com> To: "Multiple recipients of list ADHESIONS" <adhesions@mail.medispecialty.com> Sent: Tuesday, November 20, 2001 8:35 PM Subject: Re: Trusting our doctors:Sally is RIGHT ON!

> Everyone:
>
> I think Sally has hit the nail on the head. We suffer from a
> debilitating, very stressful medical entity that is so misunderstood and
> even neglected by the medical profession that we are subjected to
> extremes.
>
> I have recieved many, many letters from you asking why you are being
> told once you've had a laproscopic exam and been diagnosed with
> adhesions to seek psychiatric assistance. It escapes me as to why
> surgeons are telling women, typically between 25 and 45 that "adhesions
> do not cause pain" and therefore, are directing you to seek ongoing
> therapy. (mental "cleansing"!!)In effect, you are being told your pain
> doesn't exist in your belly, only in your brain.
>
> We can all sit here on the chat board and talk about the multiple
> surgeries we have had, the various conflicting diagnoses we are getting,
> the refusal by some pain management doctors to treat us long term with
> opioids for unmanageable pelvic pain, and the discussion of horror
> stories from ER visits where we have been accused of being drug seeking
> junkies, "bored housewives" and people suffering with hypochondria and
> other insipid opinions.
>
> The bottom line remains, we have a valid, debilitating condition that
> has resulted either from too many operations performed by surgeons
> trying to cure the incurable with more cutting or by surgeons attempting
> to get us off their backs (we are the bane of the surgeons's world
> because we never go away, never heal completely and always have a degree
> of pain)
>
> I have watched this board evolve from a few dozen of us last year to
> hundreds, looking for answers and for help and I have yet to see ANYONE
> announce that they are totally free of pain, have been treated like a
> human being with a legitimate illness and have found a resolution to
> their concerns.(Yes, I have seen remarkable responses from a very small
> % of you who have had positive results from Dr Redan and others like
> him)But most of us are still floundering for help and for validation.
>
> By the way.............if you try to sign up for Social Security
> benefits based strictly upon your adhesions related disease and the
> subsequent pain and inability to control bladder/bowels, etc, you may be
> surprised to learn that we are still not considered a valid disease
> process as far as SSI is concerned. It doesn't matter if you wet your
> pants every few hours and can't work without Morphine.....ARD isn't a
> "known disease" according to Social Security.
>
> If you are an alcoholic or drug abuser you stand a better chance of
> being accepted for Social Security disability benefits than if you have
> adhesions! Believe me, I KNOW. I am fighting this right now, for
> myself.
>
> I guess we can all continue to talk about this and share stories, which
> is a wonderful chance to release the frustration, and the
> anxiety.....OR...we can start petitioning someone to do something.
>
> I DO NOT know who to petition first, right now,, but I promise you I
> will make this my project if even a few of you offer me your support.
> I only want to know if even some of you are willing to work with me on
> educating doctors, surgeons, pain specialists and all others who are
> treating us like we are freaks, giving them the info they need and the
> resources they need to better educate themselves.
> I've got to tell you folks, over a year I have read the same concerns
> the same questions and the same responses from you and from your doctors
> and I have seen very few of you who come back and talk about the
> "excellent, respectful, professional" treatment you have recieved every
> time you complain of adhesional pain. Except for the few of you who are
> lauding Dr Redan, I am not seeing a shift in the overall response to our
> disease.
>
> Sally, you are 100% correct. We ARE AT THE MERCY OF THESE DOCTORS/ They
> do NOT know what they are doing with us and they are as frustrated as we
> are, but now, the most current suggested surgical process is to remove
> all organs from our otherwise healthy bodies and hang bags and tubes?
> GIVE ME A BREAK!!!!!!!
>
> I am willing to petition Washington DC if necessary, and I will go there
> alone! But I need your support, your thoughts and your ideas.
>
> You can talk all you want about this ache and that pain and the way you
> are being ignored and lambasted but if you refuse to offer me the data I
> need, I can only tell you I send my hugs, my best wishes and I sign off
> this board for now.
>
> I need to know how you are recieved in ERs when you have a pelvic pain
> crisis. How your family doctor is treating your ongoing pain. How the
> surgeons are directing you once they've established that you have
> adhesions. What you are being told as a long term prognosis after
> surgery. If your pain is being managed sufficiently. If you are being
> told to (in effect) get lost after your inscision has healed.
> I need data before I can go to bat for you and for me.
> Help me help you?
>
> We can't be cut open every few months, fed pain pills and told to see a
> psychiatrist as a final solution. We need to be recognized as people
> with a disease process as valid as diabetes or cancer.
> I need your input......Please.
>
> Ginny
>
> gingin99@home.com
>
> At Tue, 20 Nov 2001, Sally Grigg wrote:
> >
> >Sometimes we trust our doctors too much. We don't really have many
> >choices, but sometimes we can just say NO. And go looking for a doctor
> >who isn't so quick to cut. We're in a no win situation with the medical
> >care situation as it currently functions. Since they don't really know
> >what they are doing, we are at their mercy. And we are in such pain,
> >that we'll say yes to just about anything to alleviate the pain. It
> >would be better most of the time to take pain pills until the
> >researchers find a cure and they will. I have faith. Love to all, Sally
>


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