Urgent, Response and Help needed
Urgent, Response and Help needed
n/a
Last edited by becat on Mon Dec 28, 2009 2:32 am, edited 1 time in total.
I knew It
How did I know that the three of you would say yes? Thank you all so much. We've got nothing to gain but tons of hope and help from this.
OK ALL YOU NEWBIES, LETS GO. WE'RE IN THIS TOGETHER AND WE NEED YOUR STATEMENT FOR THIS "DOWNUNDER GROUP" AND OUR OWN THIS YEAR.
EMAIL THEM TO ME HERE AT THE SITE AND WE'LL GET SOMETHING STIRRING. HOPE IS STILL THE WORD FOR US ALL.
My many hugs and tons of love to ya'll.
OK ALL YOU NEWBIES, LETS GO. WE'RE IN THIS TOGETHER AND WE NEED YOUR STATEMENT FOR THIS "DOWNUNDER GROUP" AND OUR OWN THIS YEAR.
EMAIL THEM TO ME HERE AT THE SITE AND WE'LL GET SOMETHING STIRRING. HOPE IS STILL THE WORD FOR US ALL.
My many hugs and tons of love to ya'll.
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ViewsAskew
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Bit unsure ...
Um - I'm very new - I joined a few hours ago - and I live in Australia. I haven't had any sleep this week so can someone please explain in point form - very few words please! - exactly what is needed and who to send it to. I would be thrilled to help! If I can. But I'm not entirely sure I know what you want. Or is it too late to send something in?
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Guest
Ok - will definitely do that for you. Just need to go interact with my children for a short while. It's mid morning here 
I will endeavour to write it in the next 24 hours. I hope that's not too late. And thankyou for your replies! Very prompt. I've saved the rls algorithms page for when the children stop demanding what's left of my very short concentration span!
I will endeavour to write it in the next 24 hours. I hope that's not too late. And thankyou for your replies! Very prompt. I've saved the rls algorithms page for when the children stop demanding what's left of my very short concentration span!Too many things to learn...
Sorry - that last one said I was a guest. I have no idea how I logged out. But it was me! I'll pay more attention next time.... Thankyou again....
Sugar and Slyemm--
Just let me add that I've read a couple of those that were submitted at the conference in November (and I wrote one), and every single one of them was different. We each had our own style, our own "take" on this condition, our own level of symptoms, our own perspective on it's impact on our lives.
Some of us were eloquent, some of us were forceful, some were fairly concise, and some were long-winded... they all brought me to tears, because I know (at least a little bit, because my symptoms are milder than many here) what they mean and how they feel.
I think that after reading them, the professionals at the conference probably have a little better idea how we feel and what we mean, too.
So, just like Becat said... think what you'd like to say if you had a chance to talk to someone who has a chance to maybe make a difference in this condition.
Oh, and welcome to you both.
Sara
Just let me add that I've read a couple of those that were submitted at the conference in November (and I wrote one), and every single one of them was different. We each had our own style, our own "take" on this condition, our own level of symptoms, our own perspective on it's impact on our lives.
Some of us were eloquent, some of us were forceful, some were fairly concise, and some were long-winded... they all brought me to tears, because I know (at least a little bit, because my symptoms are milder than many here) what they mean and how they feel.
I think that after reading them, the professionals at the conference probably have a little better idea how we feel and what we mean, too.
So, just like Becat said... think what you'd like to say if you had a chance to talk to someone who has a chance to maybe make a difference in this condition.
Oh, and welcome to you both.
Sara
Hi
Sara, my angel..........thank you for explaining that further for me. You've got an email coming to ya.......soon.
She right, they were all different in the details or how we talk about it. That's what makes this a great project. We could have 100's of these statements and no two will be alike.
Amazing how they suck you in and make you read the next one. I learned so much from everyone of them.
Sly there is no real rush on this, EXCEPT it needs to be done before FEB. 1......
However, I think you'll make a great arguement if you write one now. You'll look back on it one day while in successful treatment and know how far you've come.
Cheers, Thanks, My love and hugs.
What a great group of people that have surely come my way...........
She right, they were all different in the details or how we talk about it. That's what makes this a great project. We could have 100's of these statements and no two will be alike.
Amazing how they suck you in and make you read the next one. I learned so much from everyone of them.
Sly there is no real rush on this, EXCEPT it needs to be done before FEB. 1......
However, I think you'll make a great arguement if you write one now. You'll look back on it one day while in successful treatment and know how far you've come.
Cheers, Thanks, My love and hugs.
What a great group of people that have surely come my way...........
Thankyou!!!
A Great Big THANKYOU to everyone who has responded so far!!
Slyemm ... I hope to get to know you a lot better being a fellow aussie, and the one who's causing all this fuss
I am waiting to hear back from the organisers about who, what, where, when and why, but even so, I would dearly love to be armed with as many "Quality of Life" statements as possible so I can make as big an impact on our politicians as possible.
Please, please, please keep the statements coming in ... as it has been said so many times on these boards, as individuals we might not be able to acheive much, but as a group, we pack a mighty punch!!
.....
BTW Becat ... I was recently given a keyring with my name on it and it says the following: "Nadia ... Meaning: HOPE". On the other side it says "Nadia ... loves to have a challenge come her way, for her best is all she knows to give, staying positive and up tempo, she is respected by her peers and family, loves to be active and into everything, yet enjoys the quiet moments of her life, taking time to reflect upon her day" ... think that pretty much sums me up!! I thank you from the bottom of my heart for the words of encouragement you have sent me over the past few days, they have meant so much to me and have given me the positive boost that I needed so badly!! Love you heaps!!!
Slyemm ... I hope to get to know you a lot better being a fellow aussie, and the one who's causing all this fuss
I am waiting to hear back from the organisers about who, what, where, when and why, but even so, I would dearly love to be armed with as many "Quality of Life" statements as possible so I can make as big an impact on our politicians as possible.
Please, please, please keep the statements coming in ... as it has been said so many times on these boards, as individuals we might not be able to acheive much, but as a group, we pack a mighty punch!!
.....
BTW Becat ... I was recently given a keyring with my name on it and it says the following: "Nadia ... Meaning: HOPE". On the other side it says "Nadia ... loves to have a challenge come her way, for her best is all she knows to give, staying positive and up tempo, she is respected by her peers and family, loves to be active and into everything, yet enjoys the quiet moments of her life, taking time to reflect upon her day" ... think that pretty much sums me up!! I thank you from the bottom of my heart for the words of encouragement you have sent me over the past few days, they have meant so much to me and have given me the positive boost that I needed so badly!! Love you heaps!!!
Nadia
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
Please help!!
Pretty, pretty, pretty please (with lots of sugar and a cherry on top) ... would everyone please consider sending in a Quality of Life Statement for me to take to the RLS Awareness Event being held in Canberra, Australia on Valentines Day, February 14th.
Be it one from last year (i.e. for the November National Meeting) or a completely new one ... the more real life stories (I wish there was a better word I could use there) I can take with me, the bigger the impact you can help me make.
Please help!!
The absolute latest for getting contributions to me (email is fine nadiarussell_75@yahoo.com ) is February 10th.
Thankyou to those who have already contributed ... it is greatly appreciated!
Be it one from last year (i.e. for the November National Meeting) or a completely new one ... the more real life stories (I wish there was a better word I could use there) I can take with me, the bigger the impact you can help me make.
Please help!!
The absolute latest for getting contributions to me (email is fine nadiarussell_75@yahoo.com ) is February 10th.
Thankyou to those who have already contributed ... it is greatly appreciated!
Nadia
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!