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Mrs. Beverly J. Doucette, Photo Available:::::;Director: Bay Area Adhesion S
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- I had adhesions for 14 Years before detection
- Diagnosed on October 14, 1993
- I have 3 Children
- I live in Marinette, wisconsin USA
From: Beverly J. Doucette bnb@new.rr.com
Date: June 08, 1999 10:38 AM
Dear Friends
My name is Beverly J. Doucette
I suffer from a disease called Adhesion Related Disease ( ARD ); and have been instrumental in starting the International Adhesion Society with Dr. David Wiseman Ph.D. of Dallas, Texas -- and a woman from Minnesota, who also suffers with ARD. Please familiarize yourself with this disease by going to: http://www.adhesions.org
Although there is no known cure -- nor even an effective treatment for ARD -- I did undergo surgery in New York City one year ago ( April 22, 1999 ) in an attempt to have my attached internal organs separated -- with the hope that a surgery would offer me the only chance to survive this disease.
Since then, I have been able to volunteer as an IAS outreach worker; and I have been instrumental in assisting many, many other ARD sufferers to this same surgeon; because he is the only surgeon in the USA, who has the necessary skill needed to separate attached organs -- with any hope of keeping them separated!! He has offered me the chance to experience life once again.
With the exception of two people, all my communications and assistance has been through the use of the Internet.
I have suffered Adhesion Related Disease 17 years.
Today I am FREE of it!
2001
Since my recovery from ARD, I have formed the Bay Area Adhesions Support
Group. I also have volunteered to be an IAS outreach worker. As an
outreach worker I have been assisting many other ARD sufferers to the
surgeon, who performed my life-saving surgery, Dr. Harry Reich. Dr. Reich
is the only surgeon in the United States, who has the skill and experience
needed to separate adhesions which have attached organs to other organs
within the abdominal/pelvic cavity. His surgical expertise helped to give
me a chance to experience life once again.
With the exception of two people, all of my communication and assistance has
been through the use of the Internet. I have never met those I've assisted;
and that is not unusual when one uses the Internet. The majority of those I
assist or have assisted are located within the United States; but I have
assisted and am assisting people in other parts of the world too. Currently
I assist those, who suffer from adhesions, in securing the best surgical
care that is available for ARD. I offer them education and support. I have
been effective in doing this in the following countries: Canada, England,
Saudi Arabia, the Ukraine, and Australia.
My ARD Story.....
Bernie and I have three children and we live in Marinette, Wisconsin, a little community with a BIG heart!
I suffered for 14 years before I was diagnosed on October 14, 1993 as having
Adhesion Related Disease ( ARD ).
I was dying as I lay on my couch. I was not able to eat, and I vomited all
of the time. I had become intolerant to ALL of my medications. I couldn't
have a normal bowel movement without the use of laxatives. I couldn't sit
for more than ten minutes without being in excruciating pain.
In April of 1999 I went outside only two times; and that was to make the
trip to and from New York , when I had my surgey in April 1999. Otherwise my
daily pattern was like this: I went from my bed to lay down on my couch, I
took pills...and waited. Oh God, how I waited for 7 PM to come; so that I
could take my heavy dose of pain and sleeping pills...and go to bed again!
I remember looking outside...and my husband asked me if I wanted to try to
go for a walk. He knew I was too weak to do that. I said no, "because it
looked like it was going to rain. It looked cloudy and not very inviting to
me." But, you know what? My husband said the sun was really shining; and
there wasn't a cloud in the sky! It sure looked uninviting to ME...which
helped to protect me from my reality...that I was just too ill to even take
a walk.
What a good God I have!! He didn't want to tempt me, I guess; but I think
he really didn't want me to hurt even more!
Social life? No, I was not interested. I couldn't sit or eat anyway. I
hadn't sat at my own kitchen table for the past two years. If and when I
did eat, I reclined on my couch!
I love my husband and our three children so much; but I was so tired of
being sick. I wasn't unhappy. I did not feel unloved. I was just ready to
sleep forever so that I wouldn't have to continue to lay around and watch
life pass me by. Life didn't matter anymore. I was just sooo tired!
The thought of dying wasn't scarey. It wasn't depressing. I was just too
exhausted from having spent so many days in endless pain; and I was sick
and tired of the frequent nausea. I wasn't living! I was barely
existing...in order that everyone would be at peace knowing that I was still
around or something. In my thoughts I sensed that I was dying!
I realized that once my physical body was overcome by fatigue that my
fatigue would be too strong to cling to any positive thoughts in my mind.
All I wanted to do was to sleep my days away...not to suffer, worry, or
anything else for that matter. I was just too tired...too tired to fight
anymore! Where was the quality in my life at this time.
What is life if it isn't for living? At the very least, I wanted to feel
like there was some quality in my life...something to look forward to. What
did I wish I could do? I just wanted to be able to get up in the morning
and move about. I wanted to be able to eat something...without having to
experience nausea. I did NOT want to have to take a lot of pills.
I now have my wish and much more! Now I am able to do almost anything a
healthy person can do! Even though I had lost five years of my life, I
couldn't be any happier than I am with the life I have now!!
I will always live with the results of my battle with ARD
thats reality, thats life
so, I make the best of it
and again I think I am winning the battle!!!
Though my pain levels are within tolerable levels and I DO NOT take any pain medications at all, I still suffer residual damage to my intestines and cannot eat most foods! I suffer intestinal dysmotility due to the many abdominal surgeries that impacted my intestines in a very negative way.
My intestines have virtually been destroyed in their ability to function in the digestive process, thus rendering me in a constant state of nutritional deficit. For the longest time, I felt that there was nothing I could do about this condition, and as I appreciated so much the decrease in my pain, I was accepting of anything else I had to endure as a result of ARD!
I started losing my hair, developed white spots under my finger nails, they thinned and peeled as well, I lost ALL the hair on my arms and legs, and had constant nausea from simply NOT eating, bleeding gums while brushing my teeth and NOT due to any periodontal disease either! Eating was difficult for me as the immediate result of EVERYTHING I ate resulted in severe and immediate diarrhea! Food was fast becoming my enemy and with my constant battle with food, nausea my nutritional status was being compromised!! I suffered fatigue as well and ones social life suffers as well
again, I was willing to accept this as a regular part of my existence as an ARD survivor, of sorts!
I have been able to overcome this condition as well, and am living better then I have lived and felt in 20 years!
I actually feel better then I have ever felt before since starting a nutritional program called,
HerbaLife! This may sound like a commercial, but all I can say is that I have been taking these all natural products in the form of shakes and tablets for about 4 weeks now and my nails have toughened, white spots gone! The hair on my arms and legs have returned and NO bleeding of gums while brushing my teeth! I cannot eat regular foods, that is true, but as long as I cannot eat and my intestines have been compromised as a result of ARD, I now have a nutritional program that allows me to look and feel wonderful! And I do look and feel wonderful! Nausea is gone as I can get something NUTRITIONAL into my stomach early in my day without fear of any consequences occurring instantly!!! J
My energy, has returned and as important to me, any fears of my future with nutritional problems is gone! However, I will forever be afraid to eat cheese, because cheese is so constipating -- and I happen to live in the dairy state of WISCONSIN!!
I don't suppose I will be doing any CHEESE commercials!! But I would endorse
HERBALIFE commercial as I count this product as offering me a higher quality of life!
The other day -- as my husband and I were preparing to take a drive -- I
mentioned how bright the sun was shining. Here I AM sitting in the FRONT
seat, NOT laying down in he back seat with pillows!! WOW!! Now that
is living!!! I notice all the little things now; but to me they are the big things. I
went to the grocery store last week and shopped...alone!
Two weeks ago my husband said he was getting tired and was going up to bed.
I said, "Ok, honey, I'll be up when I finish putsing here." He stopped and
looked at me. It was 10 PM!! He looked at the clock; and so did I. We both started to laugh! HE was going to bed; and I was staying up! Then we hugged...and I started to cry. I REALLY started to cry!! You see, I WAS STAYING UP!!! That's all!! Something so simple but to me it meant LIFE! I want to enjoy the time I've been given.
Please offer support, educate yourselves about Adhesion Related Disease
ARD ), and share your ARD stories. Do whatever you can to reach out and
give hope to all who suffer from pain, for whatever the reason.
We now have our first grandchild, our little Jacob! Not only can I think
about traveling to visit him; but I can cuddle him for hours, take walks
with him, rock him...and I can plan for a future of enjoying everything a
grandma wants to do with her grandchild!! I have that now!!
It has been two years since I went to New York City for my adhesiolysis
procedure in April 1999. Will I continue to be an adhesion survivor? For
now I'll simply enjoy what I have been given and then take each day...ONE AT
A TIME!
Update April 22, 2001
I will not rest until I have these questioned answered, I will never be free of this disease until I have these questions answered..I will never stop working to get these questions answered..and turned around, but we ARD getting answer's to be sure!
I am listening, I hear, I am working on it, and I will NOT rest until we do not have to ask these questions!
It is so much easier to live with awareness of the up side of this disease.
People are suffering enough, and to allow ourselves to be brought down even more by ARD is something we do no have to allow it IS within our control to have peace within our pain,
we just have to look for it and hold in our hearts!!
For fourteen years I knew of no one else who suffered as I did, nor who had the same symptoms that I was suffering with! I was so very alone in this great big world believing that I was one of only a hand full of persons who suffered as I did. Those same questions could not be answered back then either, as a matter of fact, there wasn't anyone to even ask them to!
I traveled to some of the big name medical cneters, Mayo in Minnesota, Freodert in Milwaukee, Wisconsin, Marshfield Clinic, you name it, I was there..and always returned ampty handed as far as information or medical intervention to help me! Always returned, still alone in my battle for life!
Again, I turned to the computer as my only source of help and hope!
I never even found the words " post surgical adhesions" on that big internet we heard had EVERYTHING on it! Yet, when I searched and searched everyday for a clue, an explanation, anything that even remotely sounded like what I was sufferring..it was always the same response..nothing! Always nothing! I was convinced more then ever that I was really one of a very few who would die without ever knowing what it was that was taking my life.
I remember feeling sad, confused, helpless and hopeless all at the same time..then add in all my pain! I would sit at this computer, praying for something to pop up on the next click of the mouse, like sitting at a slot machine anticipating that next pull would be that BIG jackpot! Almost holding my breath, I would type in the words, " Post Surgical Adhesions, " or simply,
" Adhesions"..then " click " and off those words zoomed out into the world to bring me back all the ANSWERS!! Even ONE answer pertaining to my symptoms would have been appreciated!!
Of course it was night time as I couldn't lay in any comfortable position to think about sleep, so I was on the computer searching for help! The house was always so quiet, I was surrounded by the darkness as I sat here in the chair anxiously waiting, staring at this screen thinking, " Let this be it, Lord, please let this time bring me answers!" I was begging, pleading quietly, in my own world, alone, hoping, always hoping, " Oh my God, please don't let this happen to me, please help me!" " Lord, I am trying so hard to help myself, to be strong, to accept thy will be done..but Lord, I don't want to die yet, please Lord, let something come back to help me!!" "This computer is all I have.."
I wouldn't ever share those fears with my husband or children as I knew they were as frightened as I was, and I couldn't put any of my own fears on them. They loved me so much, and I them!
They we always busy trying to be strong for me, we all played that game! And it was okay with me! Smiles, hugs, words of encouragement, " Everything will come in time, don't worry, you'll get better! " And I would smile and say that they are right, and then drift off into another day of sleep from pills, so many pills, yet so much pain..so tired...and ready to go when that time came, almost anxious to go as a matter of fact!
Quiet, so quiet, watching the screen, waiting, waiting as something is coming up here, is it anything on adhesions? I held my breath, this is it, this time this is IT!! Words appeared!!
" Nothing found to match your search, try again..." and again, and again....
As I write this to you, I can so vividly remember my body start to tremble with fear, nausea screamed through my insides, nausea worse then I lived with all day long, nausea only gut retching fear can bring! My mind starts to drift away, almost causing me to reel as I struggle to maintain a semblance of control..my thoughts start to run wild, no one around me to turn to, all my fears and anger and whatever else happens when your filled with disbelief, shock! Realization sets in,
"I AM alone in all this, I AM going to keep suffering, and die, there ARE no answers for me..
" Oh MY God, why!!!!" I love life, I love people, I want to do things for you!
Oh my Lord,WHY ME???"
I would put my fist into my mouth and cry, my body shakes from the power of my fears, not anger this time..pure FEAR! I cry quietly as everyone else is sleeping, and I do NOT take my grief to them, I couldn't do that! Oh, I know my husband would hold me and tell me it will be all right, but I am to frightened inside to believe him. I didn't want to hear those words right now as they only increase my fears.. words meant to bring comfort bring me fear! I know why they are spoken as what else CAN he say when I am ill and dying!
When I hear those words, I knew that he also felt the same fears as me but we couldn't speak any words of reality as that is way to real and painful and scary for us to even go there!!
I cry until I can't cry anymore, I lay my head down on the keyboard, I am worn out, once again, my future is filled with nothing! I have no future..I take more pills and resign myself to this way of existing until I go home to my Lord. I pray now, but not for me, I pray for my family that they be blessed, be strong and be everything they can be. I pray that they not suffer my loss in a way that would impact them in sad ways...I fall asleep praying for my family and friends..and thanking my Lord for what I have been blessed with, pain or no pain, I had so much yet!
This scenario was repeated many times over! Even when I thought I was giving up and giving in to my illness, I guess I actually wasn't, was I! I might fall, but dang it, I get right back up! If I was going to die, then I would die being a DIE HARD!
Asking myself why I was putting myself through this again..especially since my time of being able to sit for even 10 minutes was coming to an end.. it was a very painful thing for me to drag myself to this computer and start to pluck out on the keyboard! I actually had times I couldnt hardly remember what I WAS doing on this computer! One evening as I plucked in the all familiar words, clicked them way, and waited half heartedly for a response. I probably even dozed some, LOL!
By this time I had lost all anticipations, all expectations, it was simply a habit now! Couldn't sleep, couldn't eat, vomited all the time that I had to carry around a plastic bag, hardly able to have any bowel movements, pain, so much pain, so many pills..heartburn so bad that even water flared it up, so it seemed to me, I hauled my pillow to the PC with me now, I could lay my head on the table at my left, oh, my heating pad had an extension cord attached..you know what my heating pad was for..LOL! My constant companion, my buddette I called it! I even got a heating pad cover for Christmas, and I think it was my most cherished gift!! I was so ill by this time, that all the fears of being ill had left me, I was ready, and no matter what life would dish out to my most cherished family, it meant nothing to me now..I was ready and everyone else would simply have to handle life, I wanted to go home now..to just sleep..fade away..drift home now! So tired, so very tired!!
And without so much as a fan fair, up popped the words,
" YOU ARE NOT ALONE!"
Now, you might think I was elated by this response, excited! But I simply looked at the screen and thought, " What the hell is this?" (probably not the smartest thing to say when your looking the grim reaper in the face! ) I rechecked my search word, it had to be an error, not the first time!
Hmmm, yup, spelled it right here! Hmmm, wonder what it is?
Now, after all those years, and something pops up, I mean I PRAYED for this to happen, remember? So now something DOES pop up and I start to question it!! Go figure!
I start to feel something inside me, curiosity, yup, curiosity, then paranoia as it
couldn't all of a sudden one day be about adhesions, can't be..so now I start to feel angry..hadn't even opened it and I am already convinced that it is simply an error, and I hate that let down feeling! Probably someones sick joke...so why aren't I opening it?
Easy answer...I wanted so much for it to BE something for me that I wanted to remain in this state of wonderment, of may be, what if, oh boy, what If it is..I felt a tingle of excitement, I took a deep breath and clicked it open!!!!
OH MY GOD!!!! OH MY GOD!!
Now, remember when I spent nights crying in silence by this computer so the family could continue their peaceful slumber?? Remember that??
NOT THIS NIGHT, !!!
You would have thought lightening struck me right in the bum..I was off this chair, I was up those 13 steps, down that hallway, calling my poor husbands name like a wild women! Or a women raised from the dead, shall we say!!!! :-)
I hauled him back down stairs with me to look at my discovery, my future..and I had no knowledge of any surgery, or of anything that would actually benefit me physicaly..nope, nothing like that at all..
I had found out that
I WAS NOT ALONE!!!!!
It was all up from there! Now, my point is this,
In all the suffering and pain , disappointments, fears, everything that IS part of this disease, there is the other part that exists today for ARD sufferers..
The knowledge that they are not alone, support, education so they can fight for themselves, hope, help, a chance at a future for most..we ARE gaining on this disease Sunshine, it is no longer a hopeless situation, it is by far from what it was..look at what we have conquered...not everyone will benefit right now, not everyone will be saved from the atrocities of ARD and surgeons and society, like Tammie, Karla, Robyne...lots and lots of ARD sufferers, to be sure it is sad and makes one angry! But if there IS one thing they do have all of them ONE thing that makes all the difference in the world and we hear it said over and over here in the IAS...
"They are not alone"
People will suffer, they will still have tough things happen to them, but they do have others to reach out to, they do have that life line now...and in many cases it impacts their lives in a positive way!
Without hope and with the feeling of being alone
A person has NOTHING!
Oh, yes, I hear you, I hear all of you loud and clear, and we ARE making progress, we ARE fighting, and we ARE standing together to make a difference and we ARE making a difference..
I for one will be DAMNED if this will continue as now I was made well, and I came out with gloves on and I will use them..
I feel that pain and suffering as you do, it is real but when start to feel it I am filled with disgust and that disgusts reminds me of my suffering...and I don't like suffering, mine or anyone else, so
I intend to free you from your suffering in any area that I can,
I intend to free us all..
FREE US ALL,
GOD BLESS EACH ONE OF US!
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Adhesions Quilt
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The Purpose of this quilt is to demonstrate
the global implications of adhesions. To stand
as a silent testament of the need for proper
education to assist in a timely diagnosis of
this life altering and crippling disease of women
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Add
Your
Name
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This quilt presently represents 10,857
Years of suffering
among 1,496 people before their adhesions diagnosis.
C Campbell
7 Years
Blanchard, Pennsylvania USA
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C Vincenzini, Administrative Ass't / 04
3 Years
Coatesville, Pennsylvania USA
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C J Rowe
1 Year
Houston, Texas USA
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Mrs Kris Baker
12 Years
Lafayette, Indiana USA
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Ms Kris Lovaas, General Manager
2 Years
Mound, Minnesota USA
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Mrs. Kris Nester, Executive Assistant - Pharmaceutical Corporation
3 Years
Research Triangle Park, North Carolina USA
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Moore Kylie E Moore, Mrs
1 Year
Brisbane, Queensland Australia
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L Burns, Kindergarten Teacher
17 Years
Broken Arrow, Oklahoma USA
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Ms L E
2 Years
Wellington New Zealand
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Ms. Lee Hop, clerical manager
3 Years
Ogdensburg, New Jersey USA
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Mrs Lee A McCabe, Customer Service Rep. -Banking
15 Years
Barry's Bay, Ontario Canada
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Lee Ann Pinson, Homemaker
3 Years
Olive Branch, Mississippi USA
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Ms. Linda Halford, Retired Paralegal Specialist
7 Years
Jacksonville, Florida USA
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Linda Hess, retired educator now consultant
2 Years
Pitman, New jersey USA
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Linda Kemper
8 Years
covington, virginia USA
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Stevie Gee, video producer
20 Years
london uk
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Mrs Sue Hickey, Business Owner
10 Years
Plymouth, Massachusetts USA
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Sue Lansdell, Secretay/Fricks Butane Gas Co.
20 Years
Texarkana, Arkansas USA
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