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.
>From: Sally Grigg