>----- Original Message -----
From: KarlaSent: Wednesday, July 24, 2002 12:36 PM To: Multiple recipients of list ADHESIONS Subject: Fw: Adhesions
I received this letter from Bev today. This was a letter that was sent to me....not a letter to be posted to the bulletin board, but I believe that what Bev says cuts right to the chase. Please take the time to read all of it. I have left the part that she directed right to me personally, in the hopes that it might give you all a better understanding of where I stand.
Also, please make note of the fact that there is NO waiting list for surgery in Germany. No one should be discouraged by something that is not true. Rita, I understand that you were passing on information that Dr. Lyons had shared with you....he just doesn't know what he is talking about when it comes to this. Please know, Rita, that the option is there for you.
God's love and blessings,
Somewhere up in the stars................. My angel and me!
>----- Original Message -----
From: Beverly J.Doucette To: email@example.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 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.) 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 and ahesiolysis with sharp dissection, aqua or moist hydration during surgery, meticulous homeostasis, Confluent Spraygel and a second look..and with 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 laporoscopic procedures, but that doesn't make them an adhesion specialist any more then 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, it wrong no matter how you look at the 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 a chance to LIVE while being alive!
To be educate 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, surgeons and most "professionals" within the medical field for all of our years of suffering ARD! This victimizing is not changing to a large degree, all that is changing is what is being said and what it is bang 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, miss opportunities that might offer us improvements, we will spin wheels of time and energy an ill person doesn't need to be doing ..and 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 victim said to her surgeon that her adhesion tear and bleed inside of her, 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 saying that she wants to be on clinical trials for UPPER abdominal adhesions and is evidently pursuing this avenue when 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 stating 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 so close together in time that she goes from sleep induced state to sleep induced state..how is THAT helping her??
Fears, misunderstandings of so much of their 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 saw, "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! better to err on the good side then not to err at all and someone suffer 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 is archived that any new persons wouldn't know it exists!
I am appalled at just how many " Adhesion Specialist " 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 that we in fact know more then they do when it comes to ARD? Or we can find the 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 as they are 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 then they did a year ago unless WE, the victims of ARD, take charge of our own medical intervention and direct its course! That will take us to be educated, assertive, prepared for our consultations by arming ourselves with material on ARD to present to anyone who we are interacting with regarding our ARD issues, and to tread very careful as we pursue the intervention offered to us from the medical community as if we are not informed and educated, how in the world can we keep know what is a responsible and honest intervention so we CAN keep ourselves safe? ( You remember Schulte that day in his office, lying to you with me in the room..and then when I started to questions him, he actually had to admit he was lying to you, his patient!! If any ARD sufferer thinks this is not happening today just because they know how to spell adhesions, is sadly mistaken, as it is continuing no different today then that day with us! Or the Dr. here ( Sherif??) who asked if you had pain??? And I answered him with a question in which he could very well understood what type of pain you just might have! LOL! LOL!)
I am reading 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 that I know of who HAS NO options to seek in getting 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 then 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 symptoms and suffering of 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 your still so young with so much life to live yet..and you are, but at times your 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, as 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 as in your face is a serenity that can only come from you knowing your Lord..I could not live as 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!
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