Just wanted to extend a huge THANK YOU to the people that have sent in statements. There are still coming in .................Awesome.
It's nice to know that ya'll are so willing to share in the way you do.
Angels, all of you.
Quality of Life Staement Plea
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Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
What a powerful thing this can be. I know I am slow and so far behind in this board. But if you want my input, I'll send it to you. I will also be in California in November and if there is anything I can do to help you out, please let me know. I'm not trying to steal your thunder or hard work, just want to extend an oar! Let me think my story through and I will send it to you. Thanks for your idea and work. Thank everyone who is willing to help with this, we need to be heard.
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Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
Have you ever felt invisible? Like no one can see or hear you? That’s what it’s like to have RLS. Most people have never heard of it. Many doctors tend to discount it. After all, it isn’t like you have CANCER or any other serious disease! So you can’t sleep at night, lots of people can’t. Your legs jerk and twitch? At least you don’t have Parkinson’s. There’s pain? Are you sure? You have to walk the floor at night because your legs just make you? Maybe you have a mental problem of some sort.
Most diseases or neurological problems are recognized by not only the medical community but the public at large. They have fairly concrete symptoms and are treated for the most part with the same medicines or therapy. But RLS is completely different. Symptoms vary vastly from person to person. Medicines that work effectively for some, don’t help others at all and can even make symptoms worse. It affects lifestyles just as harshly as any well-known disease; yet there is seldom any sympathy for the RLS sufferer.
If you have never suffered with RLS, there isn’t any way to tell you how it feels. Language can only take you so far; words just aren’t sufficient. It is frustrating to know that because you can’t describe something sufficiently or show proof of it’s existance, then for most people it probably doesn’t exist. But it does. It will not go away just because it isn’t recognized as a problem.
For RLS sufferers, the fight is just beginning. We have lived with RLS for a few months or for most of our lives. We live normal lives or lives curtailed because of RLS related problems. Sleep is elusive, whether occasionally or nightly. This affects our work, our families, our mental health and our physical health. RLS is a health problem in itself or comes with other problems, such as neuoropathy or fibromyalgia. Pain can be a constant. There are no medicines that are defined as “RLS medicines”. There are only medicines for other illnesses that occasionally help RLS. So we become our own guinea pigs because that is the only option we have.
But we are coming together as a unified group and as friends. We join in discussion boards check out the RLS website to exchange ideas and information. Just knowing that there are others out there like you is a great relief. We can describe the twitchy, creepy, crawly things with others and know they will understand. We can hear what works for one person and gain hope for ourselves. We can cry, rejoice and take turns rowing. We can come together in California and learn how to get our message out to others. We are a group of people with a real problem that needs and deserves to be recognized. We will not give up.
Most diseases or neurological problems are recognized by not only the medical community but the public at large. They have fairly concrete symptoms and are treated for the most part with the same medicines or therapy. But RLS is completely different. Symptoms vary vastly from person to person. Medicines that work effectively for some, don’t help others at all and can even make symptoms worse. It affects lifestyles just as harshly as any well-known disease; yet there is seldom any sympathy for the RLS sufferer.
If you have never suffered with RLS, there isn’t any way to tell you how it feels. Language can only take you so far; words just aren’t sufficient. It is frustrating to know that because you can’t describe something sufficiently or show proof of it’s existance, then for most people it probably doesn’t exist. But it does. It will not go away just because it isn’t recognized as a problem.
For RLS sufferers, the fight is just beginning. We have lived with RLS for a few months or for most of our lives. We live normal lives or lives curtailed because of RLS related problems. Sleep is elusive, whether occasionally or nightly. This affects our work, our families, our mental health and our physical health. RLS is a health problem in itself or comes with other problems, such as neuoropathy or fibromyalgia. Pain can be a constant. There are no medicines that are defined as “RLS medicines”. There are only medicines for other illnesses that occasionally help RLS. So we become our own guinea pigs because that is the only option we have.
But we are coming together as a unified group and as friends. We join in discussion boards check out the RLS website to exchange ideas and information. Just knowing that there are others out there like you is a great relief. We can describe the twitchy, creepy, crawly things with others and know they will understand. We can hear what works for one person and gain hope for ourselves. We can cry, rejoice and take turns rowing. We can come together in California and learn how to get our message out to others. We are a group of people with a real problem that needs and deserves to be recognized. We will not give up.
thank you
Rubyslippers...............Your were the first to really make me feel at home here on the board. You made me laugh. You helped educate me. You supported me. You gave me wings of my own. Your presence was a gift from God, hope of the Angels, when I had none.
There is always someone that comes before us, making our path a bit less rocky. You my dear did just that for me. My tears tonight or out of honor.....that my Angel has joined forces with her student to stir the hope.
I can't tell you how much your involvement mean to me. Thank you. Thank you. Thank you.
I am here because of you. You gave me great courage. Awesome love and understanding. I hpe I do you justice with my involvement here.
Wow, I'm just blown away.
Here's to stirring up some hope!
There is always someone that comes before us, making our path a bit less rocky. You my dear did just that for me. My tears tonight or out of honor.....that my Angel has joined forces with her student to stir the hope.
I can't tell you how much your involvement mean to me. Thank you. Thank you. Thank you.
I am here because of you. You gave me great courage. Awesome love and understanding. I hpe I do you justice with my involvement here.
Wow, I'm just blown away.
Here's to stirring up some hope!
Last edited by becat on Mon Nov 01, 2004 8:49 am, edited 1 time in total.
WOW
Ruby--
I'll never forget that day I wrote my "apology". That was the day I met some of the dearest friends I have ever had. But, I remember one thing you said to me-actually two things. You said, "If you think you said something stupid, you should read some of my posts and you'll feel better" (I'm paraphrasing) and the other was "Let me hear from you anytime". Becat called me from Texas. You were willing to drop everything to help a stranger. What a pair you two are!! I don't think we celebrate true friendships like we should anymore. Now, I've met Sara and of course, I can't leave Angie out!! Sweet Soul Baby! And, I can't forger Lyn! What a wonderful group of wonderful women and wonderful friends!
Ruby, that was absolutely beautiful--straight from the heart! I'm like Becat, you brought tears to my eyes. You are a gifted writer. You expressed exactly what I feel. It was wonderful! Thank you, thank you, thank you!
Love you,
Jan
I'll never forget that day I wrote my "apology". That was the day I met some of the dearest friends I have ever had. But, I remember one thing you said to me-actually two things. You said, "If you think you said something stupid, you should read some of my posts and you'll feel better" (I'm paraphrasing) and the other was "Let me hear from you anytime". Becat called me from Texas. You were willing to drop everything to help a stranger. What a pair you two are!! I don't think we celebrate true friendships like we should anymore. Now, I've met Sara and of course, I can't leave Angie out!! Sweet Soul Baby! And, I can't forger Lyn! What a wonderful group of wonderful women and wonderful friends!
Ruby, that was absolutely beautiful--straight from the heart! I'm like Becat, you brought tears to my eyes. You are a gifted writer. You expressed exactly what I feel. It was wonderful! Thank you, thank you, thank you!
Love you,
Jan
No one is alone who had friends.
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Guest
RIDE ON!!!!!!!!Ladies and gents, what a gift this forum is to so many people. I cant believe how many people have logged on since I did Im #172 and there are so many more now. Ya know if I hadnt had to spend so much money just trying to be heard I could go to California!! It makes me angry when I think about it that way. Visit after visit,just pleading for some help!!ERRRRRRRR. Thank you so much to you all that are going and being a voice for me and so many others. Together we can do what I couldnt do alone and thank GOD I dont have to anymore. How is Jumpy by the way I have missed him everyone take care Lyndarae
Our strength is often composed of the weakness we're damned if we're going to show.
see with new eyes
You all are the cat's meow. I swear, I get so much when this board is hopping!
OK, I've gotten more thoughtful being here. You know it's given me new eyes. New eyes that see all of this in a new way. There is real issues each one of us brings. So many great people to help sort it out.
We all started out in a strange twist. Finding this place on our own. It was what we noticed, shared, made each other think about...........in reading and learning about each other, ourselves. Extending a heart, a trust, to others that know your pain. Aussies, woman, The English, the men. The Candians, the old and young. Our world just got a little bigger, didn't it?
Well, this will be my only week to get this packet together. To take to Long Beach. It's got my breathing up abit. exhale exhale. It will all get done. Just will.
We got stronger, a little more willing to stir the hope ,..........
SO LETS STIR SO HOPE UP
OK, I've gotten more thoughtful being here. You know it's given me new eyes. New eyes that see all of this in a new way. There is real issues each one of us brings. So many great people to help sort it out.
We all started out in a strange twist. Finding this place on our own. It was what we noticed, shared, made each other think about...........in reading and learning about each other, ourselves. Extending a heart, a trust, to others that know your pain. Aussies, woman, The English, the men. The Candians, the old and young. Our world just got a little bigger, didn't it?
Well, this will be my only week to get this packet together. To take to Long Beach. It's got my breathing up abit. exhale exhale. It will all get done. Just will.
We got stronger, a little more willing to stir the hope ,..........
SO LETS STIR SO HOPE UP
Becat, my dear friend!
You take care this week and know that I am so grateful, and I'm sure I'm speaking for many of us (ALL OF US) that you are have been so willing to take on such a huge job. But, you were "chosen", you know, because of your great compassion, your determination not to give up, your passion for future generations that they will not have to suffer--This is YOUR purpose in life--this is your destiny--I believe you were born to do something like this, and thank God it was for all of us! You have such a beautiful soul, you care so much for others, and you can be a fierce opponent when you want to. I'm so proud of you! I can't think of a better representative for all of us than you!! So, stand proudly and know that we will all be thinking of you and whatever happens, whether those essays are actually seen by anyone or not, you did something many people these days don't want to do--YOU GOT INVOLVED IN SOMETHING WORTHWHILE--YOU SPENT SOMETHING PRECIOUS--YOUR TIME FOR PEOPLE YOU DON'T EVEN KNOW. Thank you, thank you, thank you.
Love and my deepest respect,
Jan
You take care this week and know that I am so grateful, and I'm sure I'm speaking for many of us (ALL OF US) that you are have been so willing to take on such a huge job. But, you were "chosen", you know, because of your great compassion, your determination not to give up, your passion for future generations that they will not have to suffer--This is YOUR purpose in life--this is your destiny--I believe you were born to do something like this, and thank God it was for all of us! You have such a beautiful soul, you care so much for others, and you can be a fierce opponent when you want to. I'm so proud of you! I can't think of a better representative for all of us than you!! So, stand proudly and know that we will all be thinking of you and whatever happens, whether those essays are actually seen by anyone or not, you did something many people these days don't want to do--YOU GOT INVOLVED IN SOMETHING WORTHWHILE--YOU SPENT SOMETHING PRECIOUS--YOUR TIME FOR PEOPLE YOU DON'T EVEN KNOW. Thank you, thank you, thank you.
Love and my deepest respect,
Jan
No one is alone who had friends.
) I want to be blowing kisses and hugs your way, since you won't be toooo far from me. please
My sweet Jan, you are just something else......Thank you for your trust. I pray I do right by us all. I do seem to have a passion for stirring things up, like I said, this is just stirring hope. Never enough of that to go around here, so we'll make our own.
Sara, the meeting is Nov. 12-13, really just the 13. But I'm there. I hope to be able to meet a few of you there. Sara, I'll be waving right back. Hope it's a clear day, so you'll see me. ha ha ha
love to you all.
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ViewsAskew
- Moderator
- Posts: 16649
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Sacramento, CA, USA
Registration?
I'd like to go to the conference - if I book a flight right now, it's not too expensive. But I can't see anywhere on this site to register!!! If anyone knows how, please let me know. I don't want to book my flight until I know that I can register.
Ann
Ann
here it is
Hi Ann,
You can go to the link below and get all the info. We'd love to have you. Would love to meet you.
http://www.rls.org/meeting2004.html
Hope to you see there.
You can go to the link below and get all the info. We'd love to have you. Would love to meet you.
http://www.rls.org/meeting2004.html
Hope to you see there.
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ViewsAskew
- Moderator
- Posts: 16649
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Sacramento, CA, USA
Becat
Thanks again. I was on that page, but didn't see the link. Guess I was looking for a big heading that said REGISTER HERE!!!! I'm planning on registering in the morning. It will be great to meet you and any others that are there.
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Guest
WOW!!! I had my make-up on for the day and I just cried it all off! Becat, you are truly too kind. I thank you for your hard work. As Jan said, you are using something very precious...your time. The meeting will be just a couple of days but there is also a support group leaders training that is an additional two days. If you think I can be of use in getting the word out in that time just let me know. I won't jump the gun until you get there. Then maybe we can plan a strategy or presenting your work. Can't wait to meet some of my new friends.