icnmgrjill
11-09-2004, 07:28 AM
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The ICN Fall Newsletter is DONE!!!!! Yahoo! Yippee!!!!! Whew!!!! For those of you receiving it by email, it will be sent out today or tomorrow. Those by mail, will receive it next week!
Developing an ICN newsletter takes alot of time and effort. We'll spend almost a month developing stories, writing stories, editing stories from other writers, reviewing research studies, updating surveys and, well, it's exhausting. But, it's all about stories and about finding tips and suggestions that might help you in your journeys with IC and that's why we do it. Thank you to Bev Laumann, Frannie Rose & Melanie N. for all contributing stories for this newsletter!!!
In this issue, we're sharing the special life story of IC patient Sue Roush, who lives in Ohio. I'm sure you've never met her. She hasn't posted on our site. She's quiet... she's softspoken... and she's humble. She's probably one of the MOST important IC patients in the country right now... because she has fought for the rights of IC patients in court... and WON! The legal precedents that she has set have the potential of helping thousands of IC patients in the coming years as they fight for their rights for a discrimination free workplace... and for their right to Social Security Benefits.
It takes great courage to fight back.... especially in court. I've done it too. It is financially and emotionally exhausting. When Sue and I finally had the chance to talk, that's how we connected. We had survived. After years of litigation, we had prevailed. We faced those who doubted us... and we chose to say "Enough." Oh, what a joy it was to finally talk with another patient who had carried that extra burden of fighting in court. :grouphug:
We both, for example, experienced lengthy, hostile depositions about our IC. We both had attorneys suggest that the reason we had IC was because we just chose to drink too much water. :rant: She had a supervisor who wouldn't let her use sick leave to go have her DMSO treatments. :mad: I had a supervisor who didn't believe my doctor's notes. :loco: She was asked to demonstrate how to self catheterize to her male colleagues. :hmm: My supervisor suggested that "I came from weak stock." :headbang: We both had just been diagnosed, were experiencing pain that we'd faced before, were scared and frightened and had employers who were thoughtless and cruel.
So, it's a real pleasure to give her national recognition... for her outcome was much better than mine. She actually made it to federal court... and won... not once, but twice!!!! :)
A big part of my job in running the IC Network is to inspire patients to stand up and be counted. We're not lesser people because we have IC. We have the right to dignity. We have the right to respect. We have the strength to take the experiences that IC gives us... and use them in a constructive way to help our families, our friends and our communities.
Some of you become volunteers.. some of you write letters asking for research... some of you help your friends behind the scenes.... and some of you believe so strongly in IC that you'll take it all the way to court. Oh, I'm so very proud of each and every one who fights back.... who understands that they can make a difference and, atleast, tries to do so. It's a good thing to try. :kissing:
So.... your homework today is to "believe" in yourself.. to believe that you're worth fighting for... to believe that your hands can still make a difference... that your heart can still give love. Believe that your life has value. Believe that you are here for a reason. I believe in you..... I really do.... do you?
That's the news from the ICN offices, where the restrooms are always comfortably heated, the paper is always soft and you never have to wait in line!
Jill :)
The ICN Fall Newsletter is DONE!!!!! Yahoo! Yippee!!!!! Whew!!!! For those of you receiving it by email, it will be sent out today or tomorrow. Those by mail, will receive it next week!
Developing an ICN newsletter takes alot of time and effort. We'll spend almost a month developing stories, writing stories, editing stories from other writers, reviewing research studies, updating surveys and, well, it's exhausting. But, it's all about stories and about finding tips and suggestions that might help you in your journeys with IC and that's why we do it. Thank you to Bev Laumann, Frannie Rose & Melanie N. for all contributing stories for this newsletter!!!
In this issue, we're sharing the special life story of IC patient Sue Roush, who lives in Ohio. I'm sure you've never met her. She hasn't posted on our site. She's quiet... she's softspoken... and she's humble. She's probably one of the MOST important IC patients in the country right now... because she has fought for the rights of IC patients in court... and WON! The legal precedents that she has set have the potential of helping thousands of IC patients in the coming years as they fight for their rights for a discrimination free workplace... and for their right to Social Security Benefits.
It takes great courage to fight back.... especially in court. I've done it too. It is financially and emotionally exhausting. When Sue and I finally had the chance to talk, that's how we connected. We had survived. After years of litigation, we had prevailed. We faced those who doubted us... and we chose to say "Enough." Oh, what a joy it was to finally talk with another patient who had carried that extra burden of fighting in court. :grouphug:
We both, for example, experienced lengthy, hostile depositions about our IC. We both had attorneys suggest that the reason we had IC was because we just chose to drink too much water. :rant: She had a supervisor who wouldn't let her use sick leave to go have her DMSO treatments. :mad: I had a supervisor who didn't believe my doctor's notes. :loco: She was asked to demonstrate how to self catheterize to her male colleagues. :hmm: My supervisor suggested that "I came from weak stock." :headbang: We both had just been diagnosed, were experiencing pain that we'd faced before, were scared and frightened and had employers who were thoughtless and cruel.
So, it's a real pleasure to give her national recognition... for her outcome was much better than mine. She actually made it to federal court... and won... not once, but twice!!!! :)
A big part of my job in running the IC Network is to inspire patients to stand up and be counted. We're not lesser people because we have IC. We have the right to dignity. We have the right to respect. We have the strength to take the experiences that IC gives us... and use them in a constructive way to help our families, our friends and our communities.
Some of you become volunteers.. some of you write letters asking for research... some of you help your friends behind the scenes.... and some of you believe so strongly in IC that you'll take it all the way to court. Oh, I'm so very proud of each and every one who fights back.... who understands that they can make a difference and, atleast, tries to do so. It's a good thing to try. :kissing:
So.... your homework today is to "believe" in yourself.. to believe that you're worth fighting for... to believe that your hands can still make a difference... that your heart can still give love. Believe that your life has value. Believe that you are here for a reason. I believe in you..... I really do.... do you?
That's the news from the ICN offices, where the restrooms are always comfortably heated, the paper is always soft and you never have to wait in line!
Jill :)