From: Beverly (
Fri Jun 11 09:24:04 1999

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 challenging of others 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...but 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 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 ask Dr. Wiseman who the second vicitm of Dr. Kavorkien ( Dr. Death )..well I'll tell 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 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 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 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 know what 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, 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 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 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
>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 "
>>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.

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