At Tue, 3 Oct 2000, Kath Findlay wrote:
>
>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