Re: Chronic, Invisible Illness Awareness Week

From: Shawna French (frenchysha@yahoo.com)
Mon Sep 23 14:56:25 2002


Jo a remarkable letter to Oprah, what a wonderful job you did!! I saw that also where she talked about the invisible human seems like she might have been talking to us? Smiles maybe that was our sign from god she will do our story! Lets hope Shawna F. Jo Eslick wrote:Well, I have written to the local papers, radio & TV stations.... I decided to write to Oprah again tonight after watching her get an award tonight for her humanitarian efforts on her show. Lets pray & think positive thoughts, if we all keep writing letters, eventually someone must get through! :-) I hope that when your letter to the editor of your local paper is published that you will remember to scan it & send a copy to Anthea Nesbitt!

Below is my latest letter to Oprah....

love & warm gentle hugs, Jo______________________________________________________

Dear Oprah, Jo______________________________________________________

I sat up in my bedroom tonight Monday, 23 September 2002 and watched you receive your very special award for your humanitarian efforts. I couldn’t think of anyone more worthy than you. Every time I watch your day time show Oprah, I learn something and I love and respect your efforts to teach, lead, offer hope and allow others to be heard. It was that part of your acceptance speech that inspired me to write to you again tonight.

I have written to you before about this subject, but I wanted to present my story again to you now, after hearing you say “most people just want to be heard” and that no one is invisible, we are all human beings.

Oprah, I am a human being and I have a painful, invisible illness that leaves me physically disabled. I don’t have a prosthetic arm or leg, I don’t use a wheel chair… well not all the time any way and I don’t have a seeing eye dog BUT I live on a disability pension while many of your fellow country men and women cannot get financial help or support!!! (I live in Australia).

My disability? CHRONIC, UNRELENTING DEBILITATING PAIN, and this pain is caused by a combination of things, but the main ingredient is adhesions or ARD (Adhesions Related Disorder). This invasive scar tissue grows inside the body after surgery, an infection, inflammatory type disease or trauma. The unknown factor about ARD is why some people seem to grow massive and invasive amounts of this scar tissue while others do not. The pain is described so many ways, but some of the main descriptive words include a deep ache, sharp, stabbing, blunt, twisting, pulling, burning or strangling this happens when internal organs are “glued” together or pulled out of shape.

I know that in the eighteen months that I have spent helping myself and fellow sufferers cope, by supporting, loving, offering advice, sharing friendship, stories and families… all of this to help us keep our dignity, our sanity and our hope. It is so easy to fall into the downward spiral of depression because of the enormity and the intensity of the pain we live with all the time, with NO relief. Doctors don’t agree about the pain, many of us stumble from doctor to doctor looking for help, relief and validation. We ARE NOT HEARD Oprah, and that is why I write to you again tonight. I know that you receive thousands of emails a week, and I know for certain that already this week alone you will have had many letters from other ARD sufferers asking for you to help our voices be heard.

Some have had the good fortune to have children; many cannot because ARD can also cause infertility. So those who have children struggle to be the best parent they can be, knowing that watching a daughters dance recital will put us in bed for days, or standing at a sporting field watching the Saturday morning hockey, football or whatever other sport our children do. While others fight depression each day, knowing that adhesions have robbed them the chance to conceive. It’s not only a physically painful disease Oprah, it is a mentally painful one too. If we had cancer, then doctors would immediately know how to treat us!!

We meet on several message boards or on chat programs like msn, we live thousands of kilometres away from each other, including those of us from other countries… BUT…. Our mateship eats up the distance and we share so much in common with pain and our daily struggles to keep the house tidy, put good meals on the table, interact with our families and do all this without making our pain worse that we feel as though we are just next door.

Please Oprah, I am a human being and so are my fellow ARD friends, please help us to tell our story. ARD can be like a death sentence; repeated surgery to remove adhesions increases the risks we take. Some have developed other illnesses and terminal diseases because of the invasiveness nature of scar tissue. I have a friend whose liver was folded in half because of adhesions; another is suffering renal failure and knows that her life will be significantly shorter than those around her. I have another friend here in Australia who is in a similar situation.

PLEASE Oprah, help my friends & I reach as many ARD sufferers as possible, we want them to know that THEY ARE NOT ALONE. I hope that you visit http://www.bombobeach.com (The Australian Adhesions Support Group) where you will find my full story and the stories of other people living with ARD, mine also has photo’s of my last adhesions surgeries, and http://www.adhesions.org (The International Adhesions Society) has good information explaining adhesions and also has good information about associated conditions too. We also want to warn new potential victims about the "hidden and not discussed" possible complication - which could be ADHESIONS.

The last two years have been stressful, painful, confusing, frightening and just plain tough! I wouldn’t wish my pain and distress on my worst enemy. Whether we live in Australia, UK, USA or Canada or any other country around the world... ARD is a problem causing millions and millions of dollars in healthcare...

With respect and hope that you will consider telling our story.

Sincerely, Joanne Eslick

--
Joanne Eslick
Founder Australian Adhesions Support Group
http://www.bombobeach.com
NSW Australian Co-ordinator of
International Adhesions Society
http://www.adhesions.org

--
I am not a medical person, and all my messages are based
on personal experience. I am a fellow adhesions sufferer
reaching out to help others.

Yahoo! News - Today's headlines


Enter keywords:
Returns per screen: Require all keywords: