I am not trying to let the air out of your balloons or anything, but I don't believe that you can just take people's stories off of the quilt. You would need a release from everyone to do that.
-- Karla
>----- Original Message ----- From: "Sally Grigg" <lostcst@mcn.org> To: "Multiple recipients of list ADHESIONS" <adhesions@mail.medispecialty.com> Sent: Wednesday, November 21, 2001 3:14 PM Subject: Ginny; What are we going to do/Sally
> 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 > > >