Re: K, this isn't finished, but thought it might help

From: Kimmi&Dave (kimmi3@mediaone.net)
Sun Nov 25 12:06:07 2001


Wonderful Story.. I too have tootled with the idea of writing a book about Pain. There actually aren't that many written out there that are by patients themselves. Many are medical doctors,physiatrist ect which I find them to ramble on and not always know what they are talking about.. I think its an awesome way for you to expel all your pain, and frustration into..Lots of luck Hugs Kimmi

> ----- Original Message -----
From: Jo Eslick To: Multiple recipients of list ADHESIONS Sent: Sunday, November 25, 2001 1:38 AM Subject: K, this isn't finished, but thought it might help

Hello peoples! Yes, this Joey is in a very good mood today and I want to share my story with you. As I mentioned a few days ago I am writing a book and have just written this little story this afternoon. It's about what has been happening with me in the last few weeks, with a story about my Dad. There are spelling mistakes & a few sections that need revising, but I thought that I would get you all to read it & tell me what you think! I am off to enjoy a BBQ with very good friends this evening & I know that means extra time in bed tomorrow, & I couldn't wait that long to share it with you!

So this is to My Dad and I have called the story

Dad's Roses

So much has happened in the last few weeks that I find now that I know what is I want to do, and why I have suffered medically for so long. I have always enjoyed reading, and from time to time toyed with the idea of writing a book. I have made several attempts including a children's book. Then I seriously considered writing about myself, after all, it's a subject I happen to know a lot about! . I love public speaking and enjoyed the challenge of debating at school, which made me think about what I could do if I managed to get the book published. Well I kind of like the idea of using it as a bridge into the career as a speaker, my subject would be about pain.

So, here I am writing about pain - physical pain and how I have learned to live with it and what I do to distract myself. There is a kind of mental pain that goes with it too and the challenge is to stay as active as possible despite the energy and concentration it takes.

In the last few weeks, I believe that my pain has increased and I KNOW that I have been involved less in life. I am talking about how I have detached myself from the every day activities as a mother, wife, daughter, friend and business manager. I have had a "feeling" that something was wrong, that there was yet another layer being added to my pain and I wasn't sure how or why. I have had an ultrasound and then a week later a CT scan, my pain was increasing, but the tests came back clear.

Still, my pain seems to be increasing and it is hard to explain to someone who hasn't lived with it just how and what it feels like. Occasionally I catch myself wondering whether there really is more pain or is if it's just all in my head. How could I know for sure? Adhesions are invisible in test results in most cases, unless an organ has been pulled or pushed out of place. I always go through this half and half thing during tests and examinations. I want them to find something, because it proves that it isn't "all in my head" then again I don't want them to find anything, because it could mean more surgery or another doctor telling me that I will just have to live with it.

So just what is it I really want? What I want is to be pain free and not have the constant fear in the back of my head that these adhesions are going to make something else wrong, requiring another cut, another anaesthetic and probably more adhesions!

Thursday night was a sleepless one, my pain so bad that I thought I had a clot in my leg; I was in agony from my neck down to my ankles! I had shooting hot, sharp pains from my pubic bone blasting a straight line from there to somewhere deep behind my belly button. I had an ultrasound about mid morning on Friday and was really struggling because of the pain. They asked me a lot of questions trying to get a picture of where and what the pain might be from, and what might have been the trigger for this new situation.

As it turned out, there is something there, just what it is at this stage is a little unclear, it could be another ovary remnant cyst, a collection of fluid from somewhere, or it could be blood. After a lot of questions and discussion, it was decided that we would try to leave it alone until my appointment with Professor Vancaillie comes up on the 4th of December.

To help me cope with the pain, I have been given stronger pain medication which in combination with what I already use should allow me enough relief to get out of bed and enjoy at the least some limited activities.

The pain so far is under control, and I have been given a chance at a breath of fresh air! I now realise just how much pain I have accepted and how well I really have been coping with it.

Everyone has watched this amazing transformation, from Shane and the girls, mum and dad to friends and business associates. Shane and I had the pleasure of attending a black tie dinner on Friday night, and for the first time in years I was able to really enjoy myself! I was able to participate in great conversations, eat wonderful food, and enjoy great wine. I sat for hours, something I haven't been able to do since surgery in April. I had been restricted to an hour or so of sitting and then it was either recline in bed for several hours to get over it or continue sitting and putting up with the consequences. What would that mean? It meant hours of unbelieva! ble pain, hot wheat packs, lots of pillows and heavy pain medication, which only seemed to take of the high points of my discomfort.

I couldn't believe it I was so excited! I had spent a wonderful evening with great friends, interesting people, enjoyed the food & wine and came home smiling and laughing! Who was this new person in my body? It was the real me, the one locked away for so long in a body that restricted every waking and sleeping moment of my life.

I slept that night, a deep and refreshing sleep that allowed me to wake up still pain free and excited! I picked up the phone & called mum, I was so excited I had to tell her how great I was feeling. I wanted to ask dad to try these tablets again, I wanted him to enjoy a day like mine. It was during that call that mum told me how good I looked that night; I had called in there on the way to the function. I wanted to do a quick "fashion parade" and show off my new outfit & to let them see that I was feeling pretty good.

It was while I was happily chatting with mum that I realised what I had been living without for so long. I had absorbed the pain and the restrictions on activity, totally unaware of just how much removed from living I had really been. It was at that moment that I knew - I had at last found the story I wanted to write. I know that I will publish this book and that my goal is to help others to change their path, to offer hope and show them how they can still embrace life instead of choosing to have surgery after surgery in the pursuit of a cure, a life without pain.

I know now that my resolve must be stronger, I must teach myself and show my family how to enjoy any special moment, any moment in it's "ordinary state" for the true miracle of life that it is.

My dad lives with pain - chronic - severe - debilitating pain that has without mercy slowly reduced his activities and his involvement in the world around him. He doesn't give into it often and fights with his mind and body every day to stay active and interested in everything around him that he can.

It was his story about a vase of roses in his bedroom the other day that helped me to see the world through his eyes and understand how he finds joy and continues to be amazed by the every day things that we seem to take for granted.

Shane and I had called in to visit with mum and dad the other day, and dad made the effort to get out of bed and sit in his recliner. His recliner needs refurbishing and can cause extreme discomfort if he sits in it for too long, so he has been spending an unusual amount of time in bed lately, waiting for the chair to be fixed.

We had been admiring a vase of roses mum had on a shelf next to the TV and dad started to tell us about Nana and her roses. He had asked mum to burn the bottom of the stems just like his mother used to do because this seems to help the roses last longer. So mum following his instructions picked some new buds, ready to open up into the beautiful flowers that roses are.

Mum put the vase of buds in the bedroom on the chest of drawers, where dad could see them from his bed. He was telling us how beautiful they were each day as they slowly changed and began to open. He said that the beauty emerged as the petals opened into a breathtaking full bloom.

Dad then simply said to Shane and I "You are so busy living, looking after the girls, working and so on, you don't notice the little changes so much - it's only when it's only the little things you get to see and do that you really see the true beauty in such things."

Dad, this afternoon I understand what you meant, just as the saying goes "wake up and smell the roses". It's like being asleep for a long long time and suddenly waking up and finding that no matter what restrictions our bodies force on us, there is still beauty and wonder in our world.

After being in so much pain I feel like I have just woken up, this relief from pain has opened my eyes. The danger is in being consumed by the pain and allowing it to keep the true beauty of our lives out of reach. We forget the joy in the ordinary and if we aren't careful it can become a bitter taste and put out the light and joy of being alive.

Whether it is a giggle we get from watching a child, the bloom of a flower a touch from a loved one - all things are an amazing part of life. Let's not sleep and let the pain overtake us. Let's not let it take us away from living in the moment and enjoying the life we have.

I understand your stubborn hold on activity now dad, thanks for waking me up again.

I love you.

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