As you know, I don't post on this site anymore...at least I didn't until today. It is this site that has given me so much support and strength thru the years. When I read your posting I wanted to reach out to you. Feel free to email me. I feel that you and I are so much alike...we are even being attacked together (well, I am not being attacked, but many of my posts from endogyn are being removed as being "bad" but posts by those who have had surgery that mention the same things remain). I will tell you now that I don't always return immediate responses to emails...it all depends how I am feeling. But, I am so willing to be your friend...to give you someone to reach out to.
God Bless!
At Wed, 30 Jul 2003, Kristie wrote:
>
>Michelle...Thank you so much for believing in me. You know I need these
>boards to keep me going. And so far today Karen has sent me 3 threating
>emails. I guess I will just have to block her address.
>I just wanted to say thank you. I have read this about the trolls. In
>the last few months, someone on one other board pretended to die of
>adhesions and now this. How can we trust people? When I am so sick and
>need someone who is thinking like I do, I don't want it to be a mentally
>ill person.
>I hope you get all the imformation you were looking for. I am a friend.
>I am true blue. I will help anyone that needs my sholder to cry on. I
>have been through much in my life and my sholder's are broad. BUT!!!!!
>I can only take so much.
>Be well my friend
>Kristie
>
>At Wed, 30 Jul 2003, Michelle wrote:
>>
>>Dear Kristie - Thank you for acknowledging my post about Thalidimide.
>>I am sorry that you are in pain and hope that someday we can all find
>>relief. This board can be a wonderful place to find comfort and
>>comraderie as well as a great source for information about ARD and
>>Chronic Pelvic Pain. You can also find a lot of information by
>>searching the archives.
>>
>>I am so sorry that you now must endure email attacks in addition to your
>>pain. The best response may be NO response and hopefully they will go
>>away soon!
>>
>>I don't know if you read this earlier post, but it sheds a little light
>>on the problem of people who find pleasure in causing trouble on
>>internet message boards and the like.
>>
>>Wishing you well,
>>Michelle
>>
>>You may have to type in link below if not clickable to read the full
>>article.
>>
>>http://members.aol.com/intwg/trolls.htm
>>
>>Contains: What is a Troll? Why Does it Matter? What Can be Done about
>>Trolls? What Not to Do Impersonation The Webmaster's Challenge What
>>about Free Speech? Why Do They Do It? Conclusion Note to Webmasters
>>
>>Some excerpts: >>>>An Internet "troll" is a person who delights in
>>sowing discord on the Internet. Trolls see Internet communications
>>services as convenient venues for their bizarre game. For some reason,
>>they don't "get" that they are hurting real people. To them, other
>>Internet users are not quite human but are a kind of digital
>>abstraction. As a result, they feel no sorrow whatsoever for the pain
>>they inflict. Indeed, the greater the suffering they cause, the greater
>>their 'achievement' (as they see it). At the moment, the relative
>>anonymity of the net allows trolls to flourish.
>>
>>At Wed, 30 Jul 2003, Kristie wrote:
>>>
>>>I am so sorry about all of this. I explained about how I didn't post
>>>that letter about Dr K. I don't know him. I am just a woman in pain
>>>that want's help on this board.
>>>However, I am still getting nasty emails and threats.
>>>If this dosen't change, I just remove myself. But since I did nothing
>>>wrong here except be a member, I don't really feel like I should have
>>>to. I learn a lot on here. I would like to continue to get the
>>>information I really need to have.
>>>I feel so bad and my heart is broken that someone is making me look bad.
>>>I just hope it get's worked out.
>>>I want my body free from pain and my heart as well
>>>IF you can give me some advice...I'll take it.
>>>Thanks
>>>KRistie
>>>
>>>At Wed, 30 Jul 2003, Dr. David Wiseman wrote:
>>>>
>>>>Dear All
>>>>It seems that my requests to behave nicely on this board have gone
>>>>unheeded. As soon as I am technically able I will be removing all the
>>>>offending posts.
>>>>For fear of repetition:
>>>>1. DO NOT make accusations about anyone that you cannot support in a
>>>>court of law.
>>>>2. Even if you think you can make such accusations, this is not the
>>>>place to do it. If you have a gripe against someone - approach them
>>>>respectfully and directly. Do not use this board as a battle ground. If
>>>>you think you have a valid criticism about anyone, document it
>>>>carefully. Summarise the points you want to make (in one or two short
>>>>sentences) and then back it up with complete documentation. Do not use
>>>>inuendo. It does not stand up in a court of law. It will not stand up
>>>>here. Review your case and ask yourself if you are really being to
>>>>harsh on the person. Do you really have evidence to support your point?
>>>>Give them the benefit of the doubt.
>>>>3. DO NOT escalate tensions by responding on this message baord.
>>>>Contrary to popular beleif - I do not spend 24 hours a day checking my
>>>>email and message board postings. If you see something that looks odd -
>>>>please tell either myself or Tracy Joslin (tracy.joslin@adhesions.org)
>>>>by email and phone. I cannot guarnatee to remove posts immediately, but
>>>>we will try.
>>>>4. Avoid the temptation to conduct your war even in email. What you
>>>>say will end up on a message baord somewhere, no doubt out of context.
>>>>5. We ARE NOT AGAINST DR. Kruschinski. Please stop all allegations to
>>>>the contrary. My post of a few weeks ago was fully endorsed by him. He
>>>>has told me that some people misinterpreted that post. Again - HE FULLY
>>>>ENDORSED THAT POST. We totally resent any accusation that the IAS has
>>>>been behind any some smear camapaign. It is not true.
>>>>6. We encourage Dr. K (and any other doctor doing this kind of work)
>>>>to collect his data and to present them to the medical community. Both
>>>>Dr. K and I fully expect that given the severity of the ARD disease,
>>>>there will be patients in whom pain or other symptoms will recur after
>>>>his, or anyone else's surgery.
>>>>7. A message board is not the place to conduct serious medical
>>>>research. A patient's perception about their problems is easily
>>>>influenced by their expectations and their impressions. By continuing
>>>>to post glowing reviews about Dr. K, or anyone use YOU ARE HARMING HIS
>>>>CREDIBILITY.
>>>>Let me spell this out. By inflating someone's expectations about their
>>>>surgery with any doctor, you are going to make them more dissapointed if
>>>>even the slightest thing goes wrong. Similarly, any posting of a
>>>>problem may prompt a patient to believe that their minor problem may be
>>>>similar. Consequently talk of "complications" can be blown out of
>>>>proportion. Nonetheless - he has a section in his message board where
>>>>he invites people to discuss their problems after surgery.
>>>>The section is called:
>>>>"Continuing pain after surgery
>>>>Here you are welcome to discuss your problems after having surgery ... "
>>>>
>>>>I do not think this is a terribly good idea to have such a section, but
>>>>if you are compelled to discuss problems that is the place to do it.
>>>>
>>>>I have discussed this frequently with Dr. K and have stressed that we
>>>>want him to collect sound and credible data. Please help him to do this
>>>>by respecting the rules of this board.
>>>>
>>>>8. Dr. K has shared with us (as well as posted on his own board)some
>>>>preliminary results of his data. I STRESS preliminary becuase they are
>>>>legitimately open to some interpretation IN EITHER DIRECTION.
>>>>
>>>>It seems that there have been some 33 US patients that have seen Dr. K
>>>>in the last 11 months or so. Some of them must be excluded from the
>>>>analysis for good reasons (eg patients have gallbladder or appendix
>>>>operations etc) , leaving 27 patients for analysis. Of these 6 of them
>>>>have reported some recurrence of pain or adhesions, which is 21%. THIS
>>>>IS A VERY GOOD RESULT, but nonetheless a preliminary one. We will be
>>>>happy to revise this estimate when there is full documentation from Dr.
>>>>K.
>>>>This compares very well with another study (that we will report to you
>>>>shortly) in which a US doctor performed similar procedures (using
>>>>Seprafilm and conventional laparoscopy) in 19 apparently similar
>>>>patients with a 24% rate of return of symptoms.The follow up there was
>>>>1-32 months.
>>>>The jury is not yet in however becuase we need to see longer follow up
>>>>for both studies, as well as data from Dr. K's European patients. We
>>>>encourage him to collect these data. Please help him maintain its
>>>>credibility by refraining from comment in either direction.
>>>>
>>>>9. Please note that both Beverly Doucette and Dawn Rose have resigned
>>>>from the IAS, at their request. As soon as we are we will remove their
>>>>names from the list of support contacts.
>>>>
>>>>Please let's return to the business of supporting patients in need of
>>>>support.
>>>>
>>>>Thank you
>>>>
>>>>--
>>>>David Wiseman
>>>>
>>>--
>>>Let's be good to ourselves....Kristie
>>>
>>--
>>Michelle
>>
>--
>Let's be good to ourselves....Kristie
>