Could you please send me a copy...I would love to read it. I have often thought I should write a book...just don't know where to begin.
Love ya!
-- Karla
> ----- Original Message ----- From: Jo Eslick To: Multiple recipients of list ADHESIONS Sent: Wednesday, November 21, 2001 5:39 PM Subject: Re: Ginny; What are we going to do/Sally
Dear Ginny & Sally
I'm not sure that you can download all the stories etc on this site, I believe you would need permission from Dr Wiseman, and each individual who has posted a message. Even though this is the Internet, there is still "ownership" of one's own story. I am currently writing a book about my experiences & I am using my posts in that book and therefore not keen for my work to be used elsewhere.
I think we should all be taking affirmative action towards our cause and I applaud you for choosing to lobby government. If we attack it from many different areas, hopefully someone will eventually pick up on our cause & do something with it. This is the reason for my book. I am using my experiences from childhood through to present day to explain how chronic pain alters our individual lives. The other reason why we should be fighting for our own cause & health is that it has a positive affect on how we cope with this painful existence, when we have work to do, our brains do seem to be able to! over ride an enormous amount of pain to give our bodies the "power" to complete the task chosen.
Ginny, I agree with you that this forum is about chatting to each other, talking about our surgeries, our challenges and lamenting about the unnecessary surgeries many of us have undergone. I know that it seems like we are no further ahead than we were last year, but lets really look at that. Since I started posting on the board in February this year, I have answered many questions, related my own experience to others who have posted questions, tried to relieve anxiety and hopefully educate visitors about our daily struggle to lead a normal life in pain. There have been many of us doing it, I don't see it as! a waste of time, because we have managed to educate, support and halt some pretty incredible downward spirals.
Just recently we had Karen from the UK asking about a "pelvic cleansing", through our horror for what had been suggested to her, through us recommending the UK support group to her, Karen discovered that she wasn't alone, and that life with tubes and bags was not going to be pleasant or really help with her pain anyway. As far as I am concerned, if Karen is the only one we have managed to help in the time that I have been here, then that is time well spent.
Writing about our feelings, concerns, asking questions and supporting each other is a very powerful tool in the fight against pain. It can be very therapeutic, our body & brain naturally feel the relief of "unburdening" ourselves of our angst and worries.
Sally is also right about not blindly trusting a doctor, because we have been brought up to respect a doctor because he has studied medicine and therefore knows more than we do. I know that a large number of us know more about ARD, Endometriosis, fibromialgia etc etc than a lot of doctors we talk to in our quest to find help & understanding. Many of us learned that lesson in a very costly and hard way, hard on our body, mind, soul and lets not forget the eroding affect it has on our family and loved ones.
I have been writing for a while now, and I hope to finish the first draft of my book by Christmas time, this is my way of fighting for my rights, my way of telling the world what it is like to live with pain, and hopefully my way of saving at least one other person, because I wouldn't wish my body on my worst enemy, and I know that many of you have similar feelings.
Love & gentle warm hugs Jo (Australia)
>From: Sally Grigg
>Reply-To: adhesions@adhesions.org >To: Multiple recipients of list ADHESIONS >Subject: Ginny; What are we going to do/Sally >Date: Wed, 21 Nov 2001 15:14:16 -0600 > >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 > >
http://www.adhesions.org/forums/listcmds.htm >
http://www.adhesions.org/forums/listcmds.htm
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