I could not have said it better !!!!!!!!
Lynn
>Hello Denise,
>
>My name is Joanne Eslick and I run The Australian Adhesions Support
>Group, which I started in February 2002. I have also been a very active
>participant on this board since the end of 2000.
>
>I read your second posting to this board just a few moments ago, and
>then noticed several responses to it, and then your response to those
>who answered you.
>
>Just a couple of things, please remember we are all ADHESIONS SUFFERERS
>NOT DOCTORS and we do NOT have any say in testing procedures etc
>initiated by drug companies or doctors. The medical researchers,
>doctors and their teams have a very strict protocol to follow and this
>cannot be compromised, otherwise the testing & research they have done
>becomes null & void.
>
>You also need to remember we all have families and or huge commitments
>ourselves, and while we do our best to love and support all who come to
>this site, it isn't always humanly possible for us to respond to every
>post. We all have bad days, and unfortunately, sometimes a message or
>two is missed. Flaming the members of the board into a response isn't
>productive, it doesn't help them and it doesn't help you.
>
>I do not read and post on this board as regularly as I used to for a
>number of reasons. Currently I am working with ARD friends in Canada,
>USA and Australia in a Letter to the Editor campaign. From Sept 23 to
>19th is "Chronic, Invisible Illness Awareness Week" and our goal is to
>get as many Letters to the Editors of local newspapers and national
>women's magazine's published. This way we can all participate in a
>POSITIVE way to help ourselves and to help awaken the general public to
>our suffering.
>
>I also receive a very large amount of private email and I respond to
>each and every one. This takes me a considerable amount of time, up to
>eight hours typing away in front of my computer. I am fortunate indeed
>that I live in Australia and I have had the opportunity to try the
>newest adhesions barrier on the market - SprayGel. So far I am
>ADHESIONS PAIN FREE, but I still have complications involving my bladder
>and my bowel. This morning I am on my way to Sydney, which is a three
>hour drive from my home, to see my surgeon for a follow-up appointment.
>
>There are many kind hearted souls - fellow adhesions sufferers who spend
>precious time answering posts on this board and on the aussie board
>too.... it can be at times draining, and if you have done it for
>sometime it can also affect your personal spirit. When this happens, it
>is time for a small break away from the board.
>
>You cannot hurl accusations and say hurtful things to people who are
>genuinely trying to help others while dealing with their own personal
>hell. Perhaps what you should have done is firstly introduce yourself
>and search through the archives for the answers to the questions you
>seek. There are currently SprayGel trials in progress all over the
>United States, BUT there are certain criteria for you to take part in
>them and certain costs and risks to you. You may be in the group of
>patients for example who don't actually have SprayGel used after your
>surgery. Do you really want to take that risk after 16 surgeries??
>Surely it would be better to wait until the product has been approved in
>your country. Another avenue is to partition your health Insurance
>company and ask them to fund your surgery overseas. Here in Australia
>the total cost would be less than $6 000 US & that INCLUDES hospital
>care in a VERY GOOD hospital until you have recovered from your surgery
>and can move to a hotel and enjoy the beauty of our harbour city.
>
>It is the drug companies and your healthcare system that you need to
>voice your anger and frustration too, not fellow sufferers. I applaud
>you for having your own web site, which does show that you have the
>ability to do something positive about your disease! Please, visit
>http://www.bombobeach.com and on the homepage, click on the newsletter
>announcement and see how you can help us help ourselves to improve the
>knowledge of the general public around the world. YES everyone NEEDS to
>be alerted to this painful, nightmarish disease.
>
>I hope that you will look the responses you received to your second
>letter again and just see how much you have hurt others, because your
>message simply fell through the net. I am sorry it was missed, yes it
>is aweful not to get a response to your posts, if you look, I have made
>quite a few over the last several weeks, and especially in the last few
>days I haven't received any response, but that's OK, I know I am doing
>my best to help and support as well as understand the angst and
>challenges faced by others.
>
>I will keep you in my thoughts and prayers and hope that in order for
>you to find peace and acceptance, you need to look inside yourself, if
>you want to be around as a mother to your child, then YOU need to find a
>way to do that, whatever it takes, we can't do it for you.
>
>love and warm gentle hugs to a fellow sufferer,
>
>At Thu, 12 Sep 2002, Denise wrote:
>>
>>I am a 40 yr. old single mother , having had 16 surgeries in 3 years
>>for Intestional Adhesions. My last surgery was Aug. 8 , 2002. Just a
>>few weeks ago. My condition is getting much worse. I am concerned
>>about the facts of what Adhesions can do to the tissues, organs and
>>anything else that they may attatch themselves to, that ultimately lead
>>to death. I would like to get information on how I may help in the
>>"Testing" field. On several different surgeries I have had "interceed"
>>placed inside of which did not work, also have had 1 full cut Abdominal
>>surgery with the placement of full Intestional and Abdominal coverage of
>>"Sepra Film", of which the full cut caused the Adhesions to grow larger
>>and faster!! currently I now still have some residual of the "Interceed"
>>from this last surgery.
>>I would like very much to help in the research in finding a cure to stop
>>this from happening to common everyday normal people like myself,,,, can
>>you please give me any information as to where or whom I may call?? I
>>live in Florida and I heard there was testing being done in Tampa???
>>
>>Sincerely,
>>A Very Desperate To Live Mom
>
>--
>Joanne Eslick
>Founder Australian Adhesions Support Group
>http://www.bombobeach.com
>NSW Australian Co-ordinator of
>International Adhesions Society
>http://www.adhesions.org
>
>--
>I am not a medical person, and all my messages are based
>on personal experience. I am a fellow adhesions sufferer
>reaching out to help others.
>
-- A new friend