Re: Information On ResearchTesting/ Volunteering
From: Denise (dam_isme@bellsouth.net)
Sun Sep 15 18:44:37 2002
At Sun, 15 Sep 2002, Jo Eslick wrote:
>
>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.
>
Dear Joanne,
first let me say Thank you to you,,, mainly for the very interesting and
informative infromation that you gave me. It was never my intention to
hurt anyone,,, I think we all hurt enough! I was upset by a personal
e-mail that was sent to me yesterday from someone who had read my first
post. The e-mail was upsetting and very discouraging to say the least!!
That too had hurt me very much!! But my outburst on this site was never
meant to hurt anyone,, and for that I truly am sorry and I do sincerely
mean that!!!! I never came here to this site intending on finding the
total answers,,, I know better than that,,, nothing is that simple! But
all I had hoped for ,,, was to have someone,, anyone,,, give me the
hopeful information that you just supplied me here today,,, that was all
I ever wanted! I have no health insurance so again this is not an option
for me,,, but I am working on getting disability ,,, and hope to win
that case and hopefully from that I might be able to afford to go over
seas!
In your response,,, you gave me ideas for other avenues to try,,, and
that was all I was seeking! Not to be condemned or to be told by a
stranger that I was stupid for ever even thinking I should try!!! I
think that would of upset even you!!! So that was the reason behind my
outburst,,, and to the readers , friends, and fellow sufferers,,,, I do
sincerely apologize from my heart! I meant no ill will to anyone!! Like
you, I only seek the answers to live!
Denise