Re: new member uk

From: anonymous (anonymous@medispecialty.com)
Wed Oct 4 19:32:02 2000


I think UK means United Kingdom.

At Wed, 4 Oct 2000, Bernie and Beverly Doucette wrote: >
>Dear Kathy,
>
>My name is Beverly J. Doucette and I am an outreach volunteer for the
>International Adhesion Society. I do not have an Atlas in front of me as I
>am doing this letter, BUT, I think that UK means the Ukraine, is that
>correct? What is your location logistically from Ireland or Germany? I ask
>this as we have a wonderfully skilled surgeon in each country as well as two
>in the USA who can offer much relief from suffering of adhesion disease.
>
>I want to offer you hope, Kath, as there is so much available today that was
>not available ( at least not known to us who suffer ARD ) that an adhesion
>sufferer can take advantage of to find some pain relief.
>
>Kath, there are medications that need to be taken on conjunction with one
>another if an adhesion sufferer is to find some degree of decrease in their
>pain...one must be on at least 1600mgs of anti-inflammitory medication like
>LodineX or Celebrex as well as an analgesic ( pain med )..if an adhesion
>patient is not treated for inflammation and only with a pain med, they will
>not even have a semblance of a chance to find a decent degree of pain
>relief...we call the mixture of medications a" cocktail " as it is mixing a
>few medications together....and...please keep an eye on any type of"
>heartburn " or Gastroesophogeal reflux disease or GERD! This is a burning of
>the esophogus and or stomach due to irritaion of same from medications etc.
>This " burning " sensation can be exasperated by things you eat or drink,
>such as coffee, chocaloate, at one time even water caused my GERD to be
>increased! If you are or do experience any of those symptoms, get to your
>personal care provider ( PCP ) to get you a prescritpion of Prilosec! We can
>discuss this in detail in the event you do experience it.
>
>When I saw there is hope for you, I am not saying that you will be pain free
>even if you do have an adhesiolysis, I remain 90% pain free following my
>adhesiolysis with Dr. Reich, but I do have some pain. Not enough to even
>cause me to take one single pill, ( well I do take the Prilosec as GERD
>takes much longer to heal once you have it, it is annoying, but to me it is
>not painfull!! ) I had hoped for a 50% decrease in pain when I went for my
>surgery, so to be able to live like this IS living life to the most!!
>
>You can start to plan to get to one of these very skilled surgeons in your
>future...that is the hope you have...ARD today does not have to be fatal, it
>will be disabiling until you can make arrangements to get to one of these
>surgeons..and even if it takes a year or two...it is still a hopefull
>situation today!!
>
>Just when you think there will be no way you will get to one of these
>fellows...keep your faith and trust that if you keep looking ..the door will
>open for you to get your surgery and a chance at regaining some of your life
>back!
>
>In the mean time...keep this door of support open my dear...
>
>In friendship
>Beverly

>>----- Original Message -----
>From: Kath Findlay <klfindlay@yahoo.co.uk>
>To: Multiple recipients of list ADHESIONS <adhesions@mail.medispecialty.com>
>Sent: Tuesday, October 03, 2000 5:58 PM
>Subject: new member uk
>
>> Hi My name is Kath,
>>
>> I am from Scotland, UK. I put my name on your quilt a few weeks ago. My
>> husband had found your sight the night before we went on holiday to the
>> USA, so my message was quite rushed. When I got back last weekend, I
>> had received over 300 e mails. Like most of you I felt that I was very
>> alone. Adhesions are not a recognised problem in this country and I
>> strongly believe that there are thousands of people here suffering
>> alone. I had quite a traumatic time getting Doctors to believe that it
>> was my adhesions that were at the route of my pain. My local Doc is
>> very sympathetic to me. I think he feels as helpless as I do. He has
>> known me for many years and watched me go from being a very busy
>> business woman to being an invalid. He fought very hard to find a
>> surgeon willing to take the risk of operating on me in Feb 98. I think
>> they are afraid that you will hold them responsible if your adhesions
>> return. I have re written my story for your quilt in the hope that I
>> can help others who might find themselves in a similar situation. I am
>> afraid it is a bit like the book war and piece, as it spans thirty years
>> of my life.
>> I really appreciated your letters. I learnt quite a lot. At the moment
>> I am taking morphine for the pain, but I am very interested in the
>> Fentanyl patches that some of you are using. I was also pleased to know
>> the names of your of your two special doctors. I just wish I had known
>> them before my trip to USA. I feel that I can identify with a lot of
>> the things that you have mentioned.
>>
>> Zoe,
>> I read your letter and I think I would follow the advice you received
>> from Karla. I had two babies while having severe adhesions. Don't give
>> up its worth it in the end. Just don't let them talk you into a
>> hysterectomy to cure your adhesions, without getting a second opinion,
>> or ten. You said in your letter that your doc gave you information
>> about barriers, I would be interested to know what. When I had my last
>> op in 98, I asked about gortex, which was all that I had heard of at the
>> time and he said that my body would probably reject it. Since then I
>> have heard a little about intergel. If you or anyone out there can tell
>> me what barriers are being offered and if they work I would appreciate
>> it. Thanks,
>> I wish you Good luck !
>>
>> Beverly,
>> I love your sense of humour I think when you are feeling down its good
>> to laugh and you help to make people forget their pain for a little
>> while. I wanted to ask you if your adhesiolysis procedure that you had
>> in 95, was done by laparoscope's, and was it done by a different Doc to
>> your one in 99. My last three separations were all done by open
>> surgery. The first one gave me 4 years pain free. The second gave me
>> almost 3 years and the last one,1 month. They were all performed by
>> different docs. The last one was performed by a bladder specialist,
>> neither of the other two would risk performing it again. They said that
>> the chances of it returning was extremely high. I felt that I would
>> rather have 2 or 3 years pain free than 10 to 20 years in pain. I will
>> have one last separation but not until I have gathered enough
>> information, so that I can be in control of the outcome not a lot of
>> inexperienced docs using me for experiments.
>>
>> A little bit about myself, you are probably thinking that I have said
>> enough already. Sorry, just thought it would help to know what I am
>> like as a person. I hope some of you will return a story about
>> yourselves. I am 49 years old. I have been married to Dave for 31
>> years. I have 2 children, Kris who will be 21 on Christmas eve and
>> jemma who was 17 yrs past July. They are both away at university in
>> Edinburgh which is a 4hr drive away. For the past 12 yrs we lived in a
>> lovely Victorian house where we ran bed & breakfast, it was my pride and
>> joy. I also ran an au-pair agency, so you can see, I was a very active
>> person. This disease has turned our lives upside down as I am sure a
>> lot of you are in the same position. We have had to move to a much
>> smaller house. My husband also had a very good job that he had to give
>> up to look after me. Most days I get up at about 10am. David does all
>> of the shopping and all household chores. I don't know how I would
>> manage without him. I like to paint, read, write on my laptop, you've
>> guessed! but most of all I like to work on my dolls house. I am able to
>> drive the car short distances and I can only walk short distances. I am
>> just getting used to being in a wheelchair, and although I am not as bad
>> as Karla, I feel for her frustration. I worry about the uncertainty of
>> the future and how much more pain I can stand. I worry about the damage
>> being done to my body taking long term medication. No one seems to know
>> much about this disease. Some won't even believe it exist. I have so
>> many questions that no one here in the UK seems to be able to answer. I
>> don't feel so alone and helpless, now that I know that there are people
>> out there who understand how I feel. I hope i can be of help to some of
>> you.
>>
>> Thank you all for listening, now that I have got all this out, I will
>> keep it short next time. Karla, I wish I could say something to make
>> you feel better. I feel there are a lot off people out there who care
>> about you and will miss your chat. In the short time I am with you, you
>> have touched my heart. I hope you will be back to chat soon as I think
>> your knowledge will be very valuable to others. I believe we will be
>> running about like Bev one day. Its just not our turn yet.
>> Love to you all
>> Kath
>>


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