Chrissie, Re Don't get disappointed

From: klfindlay@adhesions.org.uk
Sun Nov 12 20:24:22 2000


My Dear Chrissie, I have been waiting on this letter from you for a few weeks. I felt in your last letter that deep down you were worried about the pain returning. I am so so sorry for you. I know exactly how you feel.The disappointment runs deep. When I had my last Adhesyolisis two years ago, I was shocked when it returned within one month. This had never happened before. I always got at least 3 or 4 years before they returned. I believe you know your own body and when you have Adhesion pain there is no other like it. Trust your own instincts and get the medication that you need. Your Dr should give you the medication straight away. Do not let them go through all this sh--,(exuse the language but I am so angry) its in your head. Its in your bl---y abdomen and you need pain medicine soon before you commit murder. (HIS)

If you take opiates and you have no pain, then you will get addicted. IF you have pain and you take an opiate it goes straight to where the pain is and you don't really get addicted. I used to worry about taking long term opiates for my Adhesion pain but I have found that even being on them for 4 years I can come of them in a few weeks if I had to. At the moment you must feel that there is no hope. You must be saying why me. You are probably thinking, where do I go from here.

When I had my op that didn't work, I felt all these things. I am the kind of person that will do anything for anyone. If it is in my power to help someone, then I will. I kept saying over and over in my head, that I must have been a really bad person in my last life to deserve this.

I told friends that I would be in a wheelchair within 5 years, and I was worried about what the future held for me, I felt that I was just waiting for the ARD to take over my organs and in 10/15 years I would be dead. that's if I could suffer the pain for that long. They looked at me as if I was being melodramatic, just feeling sorry for myself, that I was exaggerating. They never new really how scared I was.

I got up one morning and decided that if I was going to die then it wouldn't be without a fight. Having Adhesions is like being a cat with 9 lives, operations) except we don't have that many. I reckon that I probably only have one life left and I don't intend to waste it.

I was in a wheelchair within two years, its not so bad, it gives me some independence. I have started the United Kingdom Adhesion Society, Which I probably would not have done if my op had been a success. I intend to educate doctors and help other fellow sufferers, and ultimately get on top of this nightmare of a disease.

I worry very much when I read the posts and everyone is jumping up and down, claiming they are cured. I know its good to be positive, it gives us hope. It also makes everyone else here wish it could be them. I know this because I have felt this myself.

I am sorry, that your Adhesions have returned so soon after your surgery, but it will help people to be more cautious and not jump on the surgery band wagon too soon.

I have not heard of this oxycontin that you take. Is it good? I am taking Fentanyl 75mg and diclofenac 50mg. How many surgeries have you had? Will you be able to have another one. I am going to wait until I get some good evidence, that it will work for me. Until then my fight will continue. WE ARE NOT ALONE

IN FRIENDSHIP KATH stickyfriends@adhesions.org.uk


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