Re: calling all drugs please!!!

From: Jo Eslick (wallamara@hotmail.com)
Mon Feb 4 03:50:06 2002



Hi Evelyn,

Every time I read one of your posts about Zac, I just feel so sad that children have to deal with this kind of pain..... but I have something to give you that may help ease your emotions just a fraction, because I know that NOTHING "said" can really help you feel better about Zac except a complete miracle cure.

I have lived with pain all my life, and as you know I am currently writing a book about my experience, and Karla Nygren from the USA is a contributing author.  I have also just launched my own website for Australian adhesions sufferers, but also for all the special people I have come to know through the IAS board. 

What I want to give you is a grain of hope, an idea of how Zac will view his condition as he continues to grow and mature with your loving care.  I was having a conversation with a pain counciller about my situation and we were discussing how, over the years I have accepted "new layers" of pain without much fuss or thought (until the last 9 years or so), I had learned by instinct how to "control" the impact pain was having in my daily life and activities.

I started when I was a little older than Zac, perhaps six or seven years old and I went to bed at night during winter with dread.  I knew that with bedtime, came pain, pain so bad that I would be unable to sleep.  You see I was born with dislocated hips, they call it hip displacia these days, and I actually learned to walk, with my first time parents unaware that my "funny gait" was not due to the thick cloth nappies I wore, but because I had no hip joints, they hadn't formed.  It was my grandfather who noticed it first and asked mum to visit our family doctor and just check it out.

So I was put into a full body plaster to force my hip joints to form, it worked to some degree on one hip and the other not so well, which has left me with pain which has given me more grief as I get older and heavier of-course..LOL.  My pain was increased and a new layer added when I hot puberty and I began my menstrual cycle.  I now know that the pain I suffered for so many years 22yrs as it happens, until my hysterectomy, and that's when the real "FUN" started....... However it was only APRIL 2001 that I discovered that the pain I was suffering wasn't in my head, it was in fact endometriosis.  Finally, validation and confirmation that I wasn't a weakling, a complainer or lazy, I was suffering GENUINE and REAL very REAL pain.

This counciller told me that it is often those who "grow up" knowing and living with pain that cope the best, often developing their own ways to divert attention away from the pain.  When I was little laying awake in bed, tears running down my cheeks, it was the "stories" I made up in my head, those childhood fantasies that helped me cope, as I got older I fell in love with a beach!  It became my new way of coping, I had taught myself how to use "visualisation" to reduce the effect pain has on me.

Another way I have learned to cope is through writing, I started off with journals for myself and then I happened to give one of my daughters a beautiful journal for her birthday, and a new tradition evolved.  All of my girls now have a journal, and we write notes to each other from time to time, expressing feelings or recounting a special event and so on.  This has allowed the girls to cope with me "hiding" over long periods of time in the last two years while I learned to cope with what to me felt like a "near death experience" and the trauma of two major surgeries within 5 days along with countless other invasive tests and scans as well as a few minor procedures and finishing with the removal of my ovaries in April last year and the onset of INSTANT menopause, with no councelling and no warning about what I was about to deal with.  The end product of my writing has turned into a book, a casual conversation with a friend has turned into the (not to distant future!) production of  a film, and last Friday, the launching of a website aimed at offering comfort and hope to EVERYONE around the world suffering with pain, chronic debilitating pain caused by Adhesions related Diseases, Endometriosis or both.  I also want to offer help for the men too, because I understand that men don't seek comfort and support from other men - usually they internilise their pain - trying to pretend it away, because that is what society has expected for so long.

So Evelyn, please as Zac's full time carer and Mother, I offer you the hope that Zac will enjoy a heightened sense of the simple joys of life and will grow into a wonderful and well adjusted young man.  I having included a section on my website called "How to cope" and today I have spent typing up all the ways I have learned to cope throughout my life.

I also have some observations in that same section for carers, family and friends of chronic pain sufferers, because while you see me as the person in pain within my family, my own husband has his own health challenges too, and we lived with the fear that he could possibly die as I watched him slowly loose the choice of variety and types of food and drink as his body became more and more toxic and his organs began to shut down.  We truly believed that it would be cancer that the tests would reveal.  No answers for his illness were ever found by western medicine (he was given a diagnosis of Irritable Bowel Syndrome... don't get me started about what I think of  THAT one), and it was a last desperate hope that we sought the help from a traditional chinese herbalist who was able to "de-toxify" Shane's pain wracked body, and within two months, he was showing signs of improvement.  All this was happening while I was in hospital dealing with my own serious illness.

So, I also have a few words and a few ideas for carers too, which I hope will help them to know that they are NOT alone either, there are others who understand and they too have avenues of support and there are times when they too require the solace and opportunity to vent, because having to be the carer of someone who is ill isn't easy at all.

 Are you still with me Evelyn?  LOL  I just started to write this to you, and I suddenly felt like I was having a conversation with you.   Just a by the way .... my youngest brother had a problem with constipation and staining, and I KNOW how my other brother and I used to "carry on" about the smell and the fact that "mum... he's done it AGAIN", he was hospitalised for a week (which he still talks about fondly... go figure! ... especially the NICE nurses and the wheel chair races up and down the hallway! LOL).  He now has a son, who is also having problems, and he started school last Wednesday, and he LOVES it.

I invite you to visit my site, as a New Zealander, we are neighbours! I hope that perhaps we can set up a time to be logged into my site at the same time, because my "Note Pad" has an "instant messenger" so that, we would be able to send messages back & forth to each other.  Very soon, we will have a chat room, and THEN we will all be able to visit with each other and share the chance to have a wonderful online conversation.

Please give Zac a hug from me, and tell him he has a special friend in Australia and that she is praying that he will be better some day.

with love and gentle hugs

Jo www.bombobeach.com
 
 
>From: watsayyou@xtra.co.nz (Evelyn)
>Reply-To: adhesions@adhesions.org
>To: Multiple recipients of list ADHESIONS
>Subject: calling all drugs please!!!
>Date: Sun, 3 Feb 2002 21:06:35 -0600
>
>Hi everyone
> Zac has presently got a squeaky clean bowell
>and with your help I would like to keep it that
>way. I would like to know brand names and products
>for HERB-LAX I think that is how you spell it.
>Also Sue mentioned REGLAN and SIGMOID.
>Iknow he is only 5 years old but he is already taking
>adults doses plus with little success. People talk
>of having diarea but that never happens with him.
>
>He has just finished 5 days of kleanprep at home
>but what a terrifing time for him.
>
>To all those who returned comments to my previous
>posting. I would like to give a big thank you to
>everyone. I mentioned that sometimes I think Zac
>is just being lazy when he stains.
>I said that out of frustration and also to get
>reassurance from you that it came with the condition.
>Sometimes when dealing with doctors all the time
>you get alot of self doubt, that you wonder if when
>doctors don't believe you wonder what to believe.
>
>REGARDS EVELYN NEW ZEALAND
>WATSAYYOU@XTRA.CO.NZ
>
>--
>mums the word
>
> to the unsubscribe form at http://www.adhesions.org/forums/listcmds.htm

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