Re: WHAT YOU DON'T KNOW CAN HURT YOU........

From: alanbaleyko (alanjess@yourlink.net)
Tue Feb 22 16:18:21 2000


Bev, Your message just came in today. I do not know how it got revived. I just want to share my experiences so that others may be helped the way that everyone here has helped me!!! I always try to be careful to say that these are MY experiences and what has worked for me may not work for others. I feel bad because I complain alot about having such a hard time losing weight, and I know at least 2 others are shrinking by the day and are having trouble keeping weight on. I just wanted to say that I care about everyone else and do not want to say anything to upset anyone (apparently that is what doctors and employers are for!). God bless everyone reading this and forgive me in advance if I write something stupid or hurtful by accident! Jessica Baleyko

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.
> > >
> >
>


Enter keywords:
Returns per screen: Require all keywords: