I appreciate that you are bedridden but that makes you even more of a help to all of us. You are the ultimate personification of what we all fear with ARD. I will NEVER take advantage of anyone who suffers with ARD but I feel you may have a strong voice and be able to express your pain and concerns.
I love you for your courage and for your bravery. Now lets see if you can offer a concise history of your problem and I will add it to my compilation and ready it for submission. God bless you darlin'
g
At Wed, 21 Nov 2001, Sally Grigg wrote:
>
>Dear Ginny, I'll help, but you have to realize I'm pretty much bed ridden. But
>I an vocal and write well. We need a questionnaire and someone to send it to.
>Plus we can download all of the emails and quilt stories, etc. and send it to
>the Medical ? for the U.S.
>I'm drawing a blank, but there is one person nominated by the President and
>voted upon by the Congress who is like the Medical Attorney General. Oh, it
>makes me so mad when I can't think of things. My printer is also on the blink.
>I had an employee who downloaded the Democratic National Convention Platform
>and respones when my computer was new and the printer has not been happy
>since. But its a good idea. And don't kid yourself, it will take probably a
>year to get it all together. But we have to start somewhere. Love, Sally
>
>Ginny Halpern wrote:
>
>> 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
>>