Bernie and Beverly Doucette wrote:
> I am not sure what you are reffering to or how this letter of mine showed up
> here as if written recently. My comments here were obviously written many
> months ago, long before the forum went into e-mails. It was written at a
> time when a few postings were continually making refference to others
> postings in a not so nice way and often put down a persons thoughts and
> words when shared as pointless and unimportant when they were posted on the
> forum back then. It appeared to be a hurtfull way to communicate on an open
> forum, and being that I seemed to be a recipient of those attacks, per say,
> I wrote this posting. I do not know how or why it is being brought back to
> life, but this is not any type of response as to what you might or might not
> have staed recently. I do not recognise your e-mail as any that i have
> responded to or have even seen before tody, so you can be assured that it
> was not intended toward you in any way.
>
> Does that help at all...and you do not have to be a " quiet lurker" as far
> as I am concerned...speak up and say it like it is..I sure do!! :-)
> Are you not the same person who I just acknowledged in thanking for prayers?
> Be assured my message was not intended for you! Why would you think it was
> and how did it get revived, do you know?
> In friendship
> Bev
>
>> ----- Original Message -----
> From: alanbaleyko <alanjess@yourlink.net>
> To: Multiple recipients of list ADHESIONS <adhesions@forum.obgyn.net>
> Sent: Tuesday, February 22, 2000 3:44 PM
> Subject: Re: WHAT YOU DON'T KNOW CAN HURT YOU........
>
> > If it was something I have written to cause this letter to be written, I
> apologize. I will just quietly lurk from now on! Again, if this letter
> refers to something I have inadvertently, unintentionally have said wrong, I
> am sorry. Best wishes to all, Jessica
> >
> > anonymous wrote:
> >
> > > At Fri, 11 Jun 1999, Beverly wrote:
> > > >
> > > >At Thu, 10 Jun 1999, Helen Dynda wrote:
> > > >>I am sorry, does anyone know what I am doing to kick myself off wneh I
> am writing? I got the impression yesterday in a communication to me that
> this forum was condidered, " our group of women " and that evidently there
> has been a protacol set up as to what one must do to get in the group. I do
> not think it was even realized when that comment was possed. As with any
> sharing among the same, or a number of the same people, this sort of
> exclusivness can just happened without even realizing it, untill someone
> else starts to join in with a few challenges...then a feeling of " intrusion
> " is felt by the " group " that has pretty much dominated the service. And
> this site is a SERVICE to all. This is a public forum...freedom of speach
> and all that stuff..a basis for sharing between ALL people, adhesion
> sufferers, thier families, lay people, medical people, friends and whomever
> elects to open it! In the past week since I've been reading the forum
> comments, I've notice some challeng!
> > in!
> > > g of othe
> > > >rs opinions and wondered why? I hope that all who use this forum can do
> that with respect to others and understand that just because an opinion
> doesn't conform to your opinion, that doesn't make it wrong or less
> important to hear. It is imparative that we allow people to express
> themselves and not be challenged in negative ways. All information is
> important, all feelings are important and all questions and ANSWERS are
> important. We may think about a comment or suggestion as wrong or right, as
> not complying with what WE think it should, but non the less, it is a FORUM
> and offers freedom to say what you want, and yes, that goes for the negative
> feedback to comments, but if we , all of us, who do present on here more
> then others look at these comments and realize that we all DO NOT have to be
> on the same level of thought, then we have made progress even here in this
> forum as we will then be able to reach a larger audience of people that need
> this forum and it's information...b!
> > ut!
> > > if these
> > > > same people join in and see negative challenges to everything they
> might share, this forum will not grow, will not benefit those of us who need
> it and we will have lost a fine opportunity to help our fellow adhesion
> sufferers.
> > > >This may be a machine, but one can sure pick up emotions as they are
> put
> > > >forth through writing...and you know what I mean. I am so sorry that
> so
> > > >many are still sufferring in the area of lack of quality medical care,
> > > >not understanding thier disorder, scared, depressed and frustrated, I
> > > >too went through all that, a whole lot of us have...and we want to help
> > > >those who are open to hearing our experiences, thought and tips in an
> > > >attempt to reduce thier fears and even pain! In sharing those things,
> > > >you can pick and choose what may benefit you and ignore what you think
> > > >won't benefit you, but my god, don't tell me that what I share is not a
> > > >benefit to you...as it just may save someone elses LIFE! Remember these
> > > >words..." YOU ARE NOT ALONE! " I stated the other day that if anyone
> > > >thought that adhesion disorder can't kill...to ask Dr. Wiseman who the
> > > >second vicitm of Dr. Kavorkien ( Dr. Death )..well I'll tell you...it
> > > >was a 56 years old woman who suffered chronic pelvic pain! Our
> > > >diosrder...OURS!!! I sufferred and still suffer from this disorder,
> > > >surgery or not...I am addicted to pain maeds and am withdrawing from
> > > >them at this time, I am scared to death every time I eat as I think
> I'll
> > > >get constipated and will suffer such horrible opain BEFORE, DURING and
> > > >AFTER I deficate..yes, have a bowel movement, I live with fear that
> I'll
> > > >start to pea my pants again as i did for 10 years...and I am ONLY 48
> > > >years old now..so that put me at 38 years old living liked that! Every
> > > >little pain I get in my abdoman fills me with fear that the adhesions
> > > >are back....but then I talk to myself and run through what I have
> > > >learned about OUR disoder and I settle myself down and I am better
> > > >...better for awhile. Becuase I have educated MYSELF about adhesion
> > > >disorder I will make it through this part of it as well, but I will
> > > >alwyas live with that fear of them reforming....it is ever present in
> > > >the back of my mind and I find myself feeling anxious at times to live
> > > >every minute that I have now...and I will! I share only from experience
> > > >and what I have learned living with this....I don't know anythingany
> > > >better then the rest of you, maybe just from a different perspective,
> > > >thats all. I need to har your perspectives also, no not for personal
> > > >gains, not for any study, not really for any other reason then the fact
> > > >that you have what I have and i am so greatfull for the sharing as that
> > > >to me IS educating myself yet on all this new stuff. Thank-you Helen,
> > > >Anne, Chris,Michele, everyone who has the courage to reach out to touch
> > > >the lives of fellow sufferers like me....lets build this thing...and
> > > >lets pray for strenght and progress...as folks....I WAS dying as I lay
> > > >on my couch not being able to eat, vomited all the time, had become
> > > >intolerant to ALL my medications last September, couldn't have a
> regular
> > > >BM without laxatives, and I couldn't sit for over 10 minutes with out
> > > >excruciating pain...went outside only 2 times in April 1999...that was
> > > >to make the trip to New York for surgery...2 times. I went from my bed
> > > >to my couch..took pills, waited, oh god how i waited for 7pm so that I
> > > >could take my heavy dose of sleep /pain pills and go to bed again! I
> > > >remember looking outside and my husband asking if I wanted to try to
> > > >take a walk...I was to weak and he knew that, but I said no as it
> looked
> > > >like it was going to rain, it looked cloudy and not real inviting to
> > > >me...you know what friends...my husband said the sun WAS shining and
> > > >there wasn't a cloud in the sky! But, by the grace of GOD, it looked
> > > >uninviting to ME..and I didn't have to suffer the reality that I was
> > > >just to ill to even take a walk outside... what a good GOD I
> > > >have...didn't want to tempt me I guess..but I really think he didn't
> > > >want to hurt me even more! Social life...nope, not
> interested...couldn't
> > > >eat or sit anyway...hadn't sat at my own kitchen table in two years..if
> > > >and when I ate it was reclyning on the couch! I loved my husband and 3
> > > >children so much...but I was ready to go as I was just so tired..so
> > > >tired, not unhappy, not unloved...just ready to sleep forever and not
> > > >lay and watch life go by, even that didn't matter anymore..I was just
> so
> > > >tired! The thought of dying wasn't scary...wasn't depressing, it wasn't
> > > >really anything as I was just to tired to want to keep laying around
> > > >vomiting and in pain so that everyone else was at peace knowing that I
> > > >was still around or something...I WAS DYING! What IS life if it isn't
> > > >living? What is the highest quality of life for me? To just be able to
> > > >get up in the morning and move about..no vomiting, not a lot of pills,
> > > >toe be able to eat some...i pretty much still live on egg custard and
> > > >yogart, some scrambled eggs..NO CHEESE as thcheese is so constipating I
> > > >wll forever be afraid of it..and I live in the dairy state of
> WISCONSIN,
> > > >so I won't be doing any commercials I suppose! I mentioned to my
> husband
> > > >the other day how bright the sun was shining as we were prparing to
> take
> > > >a drive...with ME sitting up in the FRONT seat, not laying in he back
> > > >with pillows....WOW..now that IS life!!! I notice all the little things
> > > >now...but to be they are the big things...I went and grocery shopped
> > > >last week, alone! Two weeks ago my husband said he was getting tired
> and
> > > >wasgoing up to bed...I said," ok, honey, I'll be up in a bit when I
> > > >finish putsing here," He stopped and looked at me, it was 10pm!! he was
> > > >looking at the clock, so I did too...we both started to laugh, HE was
> > > >going to bed and I was staying up! Then we just hugged and I started to
> > > >cry...I mean REALLY cry... you see..I WAS STAYING UP!!! Thats al..just
> > > >something so simple, but to me it ment LIFE....I can't continue sharing
> > > >right now, I'm sorry, but all this reflection causes ne to have to deal
> > > >with this and I can't...I just ant to enjoy the time I've been
> > > >given....please, offer support, education, your story's..anything that
> > > >will reach out and give hope and a chance for life for all adhesion
> > > >sufferes...all who suffer apin for whatever reason...for GOD sakes...if
> > > >for no other rreason..for yourselves! Don't know if I'll ever be back
> on
> > > >as this IS hard to keep dealing with and in my selfish need...maybe it
> > > >is wrong for me to be sharing anything now that I have a a repreve in
> > > >sufferring...GOD BLESS EACH OF YOU! Bev
> > > >>The author of this article did not say that you HAD to go to a
> > > >>university medical library or even to a hospital library! She simply
> > > >>suggested these two places as an example - places which were helpful
> to
> > > >>her when she began her search for information about her health
> > > >>concerns/..
> > > >>
> > > >>As you mentioned, Chris, she had the intelligence and mental ability
> to
> > > >>be able to read and understand articles from medical journals, etc.
> This
> > > >>is an option for anyone who has similar abilities - those who want the
> > > >>challenge of educating themselves in this way.
> > > >>
> > > >>As long as each one of us has access to the Internet, we have a
> medical
> > > >>library right in our own homes. Medical information can easily be
> found
> > > >>on a wide variety of health concerns. It is time for each of us to
> take
> > > >>charge of our health situation and become an active (rather than
> > > >>passive) partner with our physician(s) in our health care.
> > > >>
> > > >>I would like to quote from a letter I received this week from a
> > > >>gentleman: "I am amazed at the amount of information you have sent me.
> > > >>Only a few days ago I felt that my future and any hope of even having
> a
> > > >>future was desperately bleak. Two dramatic changes have now happened,
>
> > > >>one being hope and the other knowledge. With the information that you
> > > >>have sent, I now have both. When your every wakening minute is in
> pain
> > > >>and controls all that you do and all that you are, and you don't know
> or
> > > >>understand why, then how is that being alive? I am now feeling alive.
> I
> > > >>will devour all the supporting information over the following days or
> > > >>weeks. I know that I won't find a physical cure possible yet, but you
> > > >>have helped me find a mental cure and that's the powerful healer. My
> > > >>deepest thanks for your care and consideration. Your help has put the
> > > >>lights on, in a very dark tunnel." This person now at least has HOPE
> and
> > > >>he knows that he is not the only person suffering from chronic pain!
> > > >>
> > > >>For now HOPE is all that any of us can expect. If we are going to
> > > >>maintain our saniety while living with daily chronic pain, it is time
> > > >>for each one of us to take charge - reach out for knowledge - reach
> out
> > > >>to others. Those of you who are participating in this forum are
> already
> > > >>taking charge. Your care and concern for someone else who is
> struggling
> > > >>with constant pain is the beautiful part of a forum such as this.
> > > >>
> > > >>Thank you, Thank you, Dr. Wiseman, for having the wisdom and
> foresight
> > > >>to make this adhesions forum possible for us and for the many people
> > > >>around the world who also suffer from adhesions. As members of the
> > > >>International Adhesions Society, we too have HOPE!
> > > >>
> > > >>- - - - - - - - -
> > > >>At Thu, 10 Jun 1999, Christine M. Smith wrote:
> > > >>>
> > > >>>At Thu, 10 Jun 1999, Helen Dynda wrote:
> > > >>>>
> > > >>>>Here is the web site for this *must read* article:
> > > >>>>
> > > >>>>" What You Don't Know Can Hurt You: Knowledge Is Power in a
> > > >>>>Doctor/Patient Relationship "
> > > >>>>
> > > >>>>http://www.obgyn.net/women/articles/comfort/comfort006.htm
> > > >>>
> > > >>>Hi Helen:
> > > >>>
> > > >>>As interesting and "empowering" as this article is, how many women do
> > > >>>you think can do what she is suggesting? I don't know what this lady
> > > >>>does for a living but I am betting she has advanced degrees. It is
> > > >>>very, very difficult for the average person to research medical
> journal
> > > >>>articles. Maybe a little, but definitely not at the level this woman
> is
> > > >>>suggesting. I have a college degree in biology as well as a year of
> > > >>>medical laboratory technology and I find it difficult to research
> > > >>>scientific journals to come to the conclusions she is suggesting. If
> > > >>>you can do it, great. But to suggest everyone do that, this is
> unfair.
> > > >>>
> > > >>>Chris S.
> > >
> > > My name is Tara and I am suffering from this problem since I am 20 years
> > > old. My original surgery was for a very large ovarian cyst and 8 years
> > > and 7 surgeries later, I no longer have a gall bladder, an appendix, my
> > > left fallopian tube, my left ovary, and a few sections of my small
> > > intestine. I have not gone one year in the 8 without at least a month
> > > in the hospital and hyperal and lipids and portacaths and central lines
> > > and nasogastric tubes and lots of pain medication, etc. etc. You know
> > > the deal. I completely relate to everything you have all said on this
> > > forum and it is great to know that I am not alone. I, too, have felt
> > > like I wish it would just stop and I could just lay down to sleep and
> > > not wake up. I have days where I have only twinges of pain (twinges in
> > > my eyes, probably excruciating to the average person) and other days
> > > where I get pains that could make me suicidal or even homicidal. I am
> > > afraid 90% of the time that the next day will be spent in a hospital and
> > > I never plan too far in advance for anything. I am lonely because I
> > > feel as if nobody understands me or what I have been through. I have
> > > experienced emotions from people ranging from disenchantment to a
> > > complete fear that I have the "cooties" or something because I am ill
> > > all of the time. My doctors look sad and frustrated everytime they see
> > > me again in the hospital. I rarely see them in their offices because I
> > > am somewhat well when I am not hospitalized. My finances have suffered
> > > greatly and I feel as if I will never marry and find someone who is
> > > willing to stick with someone who spends as much time sick as she does
> > > healthy and cannot say that she will be well ever. I guess it is just
> > > nice to know that I am not alone. Who is Dr. Wiseman and why did he
> > > start this forum? Thank you all for your comments. I have found them
> > > both informative and helpful.
> > >
> >
>