Since I know how to cut and paste, I decided to copy Bev's letter and then read it as an email. Voila!! The tornado - that I sensed I was in - dissipated!!! And Bev's letter appeared the way it was meant to appear.
Since reading Bev's letter was a problem for me, I asked Bev for her permission to re-post her letter. With her permission, I hope her letter will appear as it was meant to.
There is a lot of inspiration and wisdom in what Bev has to say!! Bev's advocacy for victims of adhesion-related disorder (ARD) covers the globe. As the result of a successful adhesiolysis procedure in April 1999, Bev has made a personal committment to make a difference for those who suffer from this unfair, "invisible disease." ARD sufferers look fine on the outside; but their lives are wracked with pain and a medical system that is still in the "Dark Ages" - as far as adhesion prevention is concerned. Enough said!! Please take to heart and heed the advice Bev is offering:
>----- Original Message -----
From: Beverly J.Doucette To: ifirgit@new.rr.com
Sent: Wednesday, July 24, 2002 9:58 AM
Subject: Fw: Adhesions
Hello Karla, I am seeing RED with the comment from Tom Lyons!! I did send emails to both him and Confluent asking for substantiation of this comment about a waiting list in Germany!
Dr. Kruschinksi emailed me questioning this post as well! I am working my ass off trying to help victims of ARD get high quality adhesiolysis that at the least, offers them the best chance of securing improvements; and it is NOT here in the USA and it is NOT in a clinical trial study! And..it certainly is not conducive to Rita to be led by Dr. Tom Lyns into a surgery with him as:
1.) Her adhesions are upper abdomen
2.) Clinical trials are for the female reproductive organs only
3.) Dr. Tom Lyons, or any other surgeon here in the USA CANNOT use the Confluent Adhesion barrier on any other organs but the reproductive organs..So what is his point of telling Rita NOT to try to get surgery in Germany where she might very well secure improvement from her suffering!! And...
There Is NOT a Waiting List for:
** an Adhesiolysis With Sharp Dissection,
** Aqua or Moist Hydration During Surgery,
** Meticulous Homeostasis,
** Confluent Spraygel Adhesion Barrier
** a Second-Look Laparoscopy
** a Gasless Procedure on top of it! I am so sick and tired of surgeons undercutting one another to secure a piece of this action on ARD! NOW they are clambering to get ARD patients - when one year ago you didn't even hear the word, ADHESIONS, pass their lips...and... TODAY - because there is a probable alternative for effective intervention of adhesions, they all become specialists??
I can understand the endoscopic surgeons wanting to reach out to the victims of ARD NOW - and they may very well have experience in performing laparoscopic procedures - but that doesn't make them an adhesion specialist any more than sitting in a garage will make me a car!
To undercut other surgeons, to lead desperate suffering victims of ARD down paths that are not only unavailable to them - but doesn't offer them the intervention they need and deserve a right to know about - IS WRONG no matter how you look at that approach! It is to secure them as a patient; and in doing that, it denies them the opportunity to secure the best available to them. IT denies them a chance to not only be alive, but to have a chance to LIVE while being alive!
To be educated and informed on ALL options available to the victims of ARD - in a honest forthright way - is the only way we victims of ARD will ever be able to make informed decisions that will ultimately help us help ourselves.
We victims of ARD have been victims of surgery, victims of surgeons and victims of most "professionals" within the medical field for all of our years' of suffering from ARD! This victimizing is not changing to a large degree. All that is changing is what is being said and what it is being said about!
Today we have to be even more acclimated to what is available to us, what is NOT available to us and we MUST ask even MORE questions about the medical intervention offered us - if we are to help ourselves and keep ourselves safe from further harm.
If we are NOT informed, we can be misled into suffering needlessly, we can miss opportunities that might offer us improvements - and we will "spin our wheels" - in time and energy an ill person doesn't need to be doing. We can be misled by statements we do not challenge but simply accept as stated! WHY?
* When did things change for us that we now accept anything said to us? * When did self-education go out the window?
* When did our focus on being our own best Dr. leave us?
* What changed that we victims of ARD simply start to accept everything said to us from a medical person?
I read that one ARD victim was told - by her surgeon - that her adhesions tear and bleed inside of her and thus her pain! Adhesions don't tear and bleed inside of us. It simply doesn't happen!! And listen to her fear and suffering!!
Another adhesion-sufferer said she wants to be in the clinical trials for UPPER abdominal adhesions - and is evidently pursuing this avenue - even though she seems to know that the clinical studies are for OB/GYN patients only! And she is so appreciative of the surgeon because he took time with her. Desperate - and rightfully so!! Also vulnerable..and uneducated about ARD and what IS available; so she is easily misled.
Another adhesion-suffere stated that her Dr. increased her pain medications almost to the point of unheard of dosages; and this victim of ARD says she takes them in massive dosages and and so close together in time trying to get relief - that she goes from one sleep-induced state to another sleep-induced state. How is THAT helping her?? NOT!!!
Fears, so much misunderstanding as to why they are suffering - frustrations galore - hopelessness when you hear that a waiting list is so long, why even try to go to Germany - and why question it?
I say: "WHY NOT QUESTION EVERYTHING" that one hears when it comes to their ARD? Do NOT stop educating yourselves. DO NOT stop questioning things; and by all means DO NOT stop challenging one another when and if you see or hear something on the postings that just doesn't seem right! It's better to err on the good side -- than it is to not err at all...and someone suffers unnecessarily!
You again, Karla, took the stand to educate and challenge on this issue. You did right! Helen Dynda is running back issues of ARD educational information - as so much of this information is in the IAS Archives. New persons don't even know this information exists!
I am appalled at just how many " Adhesion Specialists " have come out of the woodwork! Where were they a year ago when so many ARD victims were still being victimized?? Is it because we have discovered that we have a very real medical condition and will no longer take NO for an answer from them? Or is it that we know more than they do when it comes to ARD? Or is it that we can find answers to our questions - and it will not be from them! They lost this round .. and we won it!!
WE have a medical condition - and any Dr. who tries to deny that is not only foolish, but uneducated and not worthy to even attempt to treat an ARD patient. Their medical information is so antiquated and so far behind in medical technology - that they probably think they are ahead!
WE have come so far in helping ourselves by standing up for ourselves that persons within the medical field have no choice but to take a stand on ARD...but they offer no more today than they did a year ago....unless WE, the victims of ARD, take charge of our own medical intervention and direct its course!
WE will have to be educated, assertive and prepared for our consultations by arming ourselves with material on ARD to present to any medical professional we are interacting with in regarding our ARD issues. Then we need to tread very carefully as we pursue the intervention offered to us from the medical community; because if we are NOT informed and educated, how in the world can we know what is a responsible and honest intervention so we CAN keep ourselves safe?
I am reading about the fears of so many victims of ARD; and most of it is due to lack of education and awareness...And it is all there for one to read, to become informed and educated...thus reducing their fears and offering opportunities to help themselves the best they can and with what is available to do that with!
Thank-you Karla for daring to take a stand to challenge and make right a wrong being done to one of ours! It is ironic to me that in your own suffering - and the ONLY ARD sufferer I know of who HAS NO options in seeking even a little bit of relief from suffering - it is you who lead the others in what they must do! Maybe it is because you have nothing to lose by speaking it as you see it. Who can harm you anymore than you already have been harmed! And by taking a stand for what is right, who can you offend within the medical community that offers you any semblance of improvements of your own symptoms and suffering from ARD?
Karla, dear dear Karla, you will leave a legacy behind that no other within the circle of ARD will supercede. Your legacy is one of daring to make a change and standing up for what is right and just - and it is all for others, not for yourself! It breaks my heart and angers my soul to even think of this happening to you for so long in your life; and you're still so young with so much life yet to live..and you are; but at times you're alive but simply not living, as there is no denying that, is there?
We have walked this road together for a long, long time; and we talk about all aspects of your path with ARD. This IS your path now, Karla, and you carry it well with dignity, sincerity, and a compassion for all of us! I hope I never have to face ARD as you are, as there must be times when you are so alone with it! I know of no other ARD sufferer who is looking death in the face as you are; and when you reach out to help the others, all you receive back is knowing you tried to save them from the same fate as you now live and will probably die from!
May God not simply walk with you Karla, may he carry you and warm you with his strength and love, as I know he does; because in your face is a serenity that can only come from you knowing your Lord. I could not live the life you live, Karla. Though I am strong and persevere well, I know that your walk with ARD is NOT one I could do...and because of your walk with ARD, I will never allow myself to be put in that position! Thus, because of you, I am spared hell on earth!
Love Bev
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