local news
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Penguinrocks
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local news
Beware the Penguin
National news too! LOL LOL LOL
Good Morning America, today and the web story yesterday........LOL
http://abcnews.go.com/Health/story?id=3390545&page=1
I couldn't resist.
Hugs to my Penguin.
Lynne
Good Morning America, today and the web story yesterday........LOL
http://abcnews.go.com/Health/story?id=3390545&page=1
I couldn't resist.
Hugs to my Penguin.
Lynne
local news
Hi Lynne I had Denny tape Good Morning America. I enjoyed seeing you and you looked great, but they sure do not talk that much about rls. I know they had a blip on the news last night too and probably talked about rls for about 2 min.
Thanks for doing this you are a such a dear and wonderful friend. One of these days they will all wake up and hear our stories.
Thanks for doing this you are a such a dear and wonderful friend. One of these days they will all wake up and hear our stories.
Charlene
Taking one day at a time
Taking one day at a time
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SquirmingSusan
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Hey Lynne, that was great! Except I wish that reporters and scientists (and doctors) could figure out the difference between PLMS and RLS. I like your comments in the response section. I thought most of the comments were pretty positive.
This morning I got my second iron infusion. Last week the nurse was kind of snotty about it, and seemed put out by having to work with someone with RLS. Today she was all excited and asked me if I saw on the news the piece about scientists discovering the gene for RLS. And today she didn't give me a huge bruise on my hand from letting the needle hang sideways.
This morning I got my second iron infusion. Last week the nurse was kind of snotty about it, and seemed put out by having to work with someone with RLS. Today she was all excited and asked me if I saw on the news the piece about scientists discovering the gene for RLS. And today she didn't give me a huge bruise on my hand from letting the needle hang sideways.
Susan
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lizbestill
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Walking After Midnight
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"It feels like something crawling inside your legs, biting on you," said Betty Shaw, a 68-year-old florist in Covington, Ga., who was diagnosed with it. So was her 43-year-old daughter.
The condition gained cultural status through an oft-quoted episode of the sitcom "Seinfeld," in which the character Kramer is disturbed that his girlfriend has "the jimmy legs" and kicks in bed."
This bothers me.
First of all, to me it feels nothing like something crawling inside my legs and biting me.
And here, it looks like whoever wrote this is making the general statement...THIS is RLS. It feels like THIS.
I know it's nitpicking but why not just write that it's different sensations all of which give you the uncontrollable urge to move.
And I must be totally out of it. I've seen every Seinfeld episode there is, and they were made in the 90's and I don't recall RLS coming to light then, and I don't recall RLS gaining "cultural status" until a few years ago when those commercials started playing.
I don't know. Seriously....am I whining about nothing? It won't hurt my feelings just tell me the truth. My wife says I'm an old man and I complain too much so I'm used to hearing that. But to me, someone who has symptoms similar to mine will read that article and think they probably don't have RLS.
Lynne...I just saw the video. Way to go.
The condition gained cultural status through an oft-quoted episode of the sitcom "Seinfeld," in which the character Kramer is disturbed that his girlfriend has "the jimmy legs" and kicks in bed."
This bothers me.
First of all, to me it feels nothing like something crawling inside my legs and biting me.
And here, it looks like whoever wrote this is making the general statement...THIS is RLS. It feels like THIS.
I know it's nitpicking but why not just write that it's different sensations all of which give you the uncontrollable urge to move.
And I must be totally out of it. I've seen every Seinfeld episode there is, and they were made in the 90's and I don't recall RLS coming to light then, and I don't recall RLS gaining "cultural status" until a few years ago when those commercials started playing.
I don't know. Seriously....am I whining about nothing? It won't hurt my feelings just tell me the truth. My wife says I'm an old man and I complain too much so I'm used to hearing that. But to me, someone who has symptoms similar to mine will read that article and think they probably don't have RLS.
Lynne...I just saw the video. Way to go.
Hey to all, Thank you very much.
Ct, it was my exhaustion and my pleasure. I will never turn down a chance to get our message out.
Susan, I understand, they had taken a couple of the post off by the time I went back this afternoon. One man claimed the whole piece was a glorified Requip ad.......but over all the comments were nice.
3 and 1/2 hours at my house shooting and out all it, that was what they used. Made me giggle and grateful for Tivo. LOL
Editors are not on my high list of comfort people. LOL I was rather sad that the whole report was more like a blod entry, but yeah the found genes. That is hope in my eyes.
Susan, do you feel any different yet? Do they hurt? Tell me everything, because I am thinking about trying them. Snotty nurse better not bruise out Squirming Susan. I'm just hoping it works wonders for you. Does it take long to get a treatment? So many questions.
Liz I'll PM you to explain "my art" LOL it's a visual thing. LOL I painted for years, mostly free form, but have turned my attention to something a bit more involved. I'll show you. We have many artist on this board.
Randy, I tried my best to explain as many times as I could that we all have slightly different symptoms. I think reporters are trying to understand, mine, on the written interview was a great listener, really interested, in fact.
Often I have found they just want the story, so they can move on. Not to mention that editors can change things as they please.
Like I said 3.5 hours here and that is what made it on air, but so happy to have gotten the chance. I talked about you all here (didn't make it into the story of course) but I made it clear that this family saved me over and over again.
Your not whining, like the rest of us, it is hard for us to finally get a little education going, and they almost make light of it. I agree, it might turn others away. My thought is that your right to feel a bit hurt about the lack of real facts, how it is for many of us, but for starting it all out, we'll just have to work a bit harder to make the reports less general and with more general to work as many of us in as possible. There are always going to be things that don't go well.
Vent as you please my brother. I'll listen and send you a hug, punch in the shoulder and hope along with it.
thanks Bro!
The gene news is just wonderful to me. I love Dr Rye anyway, so glad he was apart of the wining research.
Hugs to all,
Lynne
Ct, it was my exhaustion and my pleasure. I will never turn down a chance to get our message out.
Susan, I understand, they had taken a couple of the post off by the time I went back this afternoon. One man claimed the whole piece was a glorified Requip ad.......but over all the comments were nice.
3 and 1/2 hours at my house shooting and out all it, that was what they used. Made me giggle and grateful for Tivo. LOL
Editors are not on my high list of comfort people. LOL I was rather sad that the whole report was more like a blod entry, but yeah the found genes. That is hope in my eyes.
Susan, do you feel any different yet? Do they hurt? Tell me everything, because I am thinking about trying them. Snotty nurse better not bruise out Squirming Susan. I'm just hoping it works wonders for you. Does it take long to get a treatment? So many questions.
Liz I'll PM you to explain "my art" LOL it's a visual thing. LOL I painted for years, mostly free form, but have turned my attention to something a bit more involved. I'll show you. We have many artist on this board.
Randy, I tried my best to explain as many times as I could that we all have slightly different symptoms. I think reporters are trying to understand, mine, on the written interview was a great listener, really interested, in fact.
Often I have found they just want the story, so they can move on. Not to mention that editors can change things as they please.
Like I said 3.5 hours here and that is what made it on air, but so happy to have gotten the chance. I talked about you all here (didn't make it into the story of course) but I made it clear that this family saved me over and over again.
Your not whining, like the rest of us, it is hard for us to finally get a little education going, and they almost make light of it. I agree, it might turn others away. My thought is that your right to feel a bit hurt about the lack of real facts, how it is for many of us, but for starting it all out, we'll just have to work a bit harder to make the reports less general and with more general to work as many of us in as possible. There are always going to be things that don't go well.
Vent as you please my brother. I'll listen and send you a hug, punch in the shoulder and hope along with it.
thanks Bro!
The gene news is just wonderful to me. I love Dr Rye anyway, so glad he was apart of the wining research.
Hugs to all,
Lynne
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cornelia
Hi Lynne,
how sweet it is what your husband says at the end of the article: 'I love her madly'!
I saw you on the video and you look great (not at all ill (LOL).
But from your voice I could certainly feel your tiredness.
Thank you for doing the interview, it certainly must have been an exhausting experience.
Corrie
how sweet it is what your husband says at the end of the article: 'I love her madly'!
I saw you on the video and you look great (not at all ill (LOL).
But from your voice I could certainly feel your tiredness.
Thank you for doing the interview, it certainly must have been an exhausting experience.
Corrie
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Penguinrocks
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Thanks Corrie, I thought it was sweet of him to even say yes to be interviewsed. He's a private man. I didn't even really listen to his end, 
, ok, a few of his responses.
He's listened to me so often , he could have given my part of the interview.
It was a wonderful thing to know, that even in the middle of all of this, he still thinks I'm worth it.
Penguin, celebrity I am not...........pissed off and determined to make this non RLS world stand and listen, I am.
But I have you penciled in, so maybe ! LOL LOL LOL Geeeezzzzz, Penguins won all the awards last year, I should be asking for yours! LOL
Love ya'll
Corrie nice to have you around again.
Lynne
, ok, a few of his responses.
He's listened to me so often , he could have given my part of the interview.
It was a wonderful thing to know, that even in the middle of all of this, he still thinks I'm worth it.
Penguin, celebrity I am not...........pissed off and determined to make this non RLS world stand and listen, I am.
But I have you penciled in, so maybe ! LOL LOL LOL Geeeezzzzz, Penguins won all the awards last year, I should be asking for yours! LOL
Love ya'll
Corrie nice to have you around again.
Lynne
WAM- You can count me among the whiny, it feels nothing like "something crawling inside your legs" or "creepy crawly" at least not to me. This popular description really annoys me and I wish they would take it out of the symptoms list, and while they are at it they can add pain to the list.
Lynne- I'm so glad that we have you as a spokes person. Thanks for putting yourself out there. You are our hero.
Lynne- I'm so glad that we have you as a spokes person. Thanks for putting yourself out there. You are our hero.
Kathy I would have to agree, pain seems more like a reasonable symptom, that a bug crawling on you. But I did my 4 criteria thing and tried my best to explain that it's sensory, so each of us would talk about it somewhat differently.
Of course, it's on the editing floor, so to say. LOL
I'm no hero Kathy, just want the best for all of us and I've never been shy about making a scene!
Hugs to all, even the whiners! LOL
Lynne
Of course, it's on the editing floor, so to say. LOL
I'm no hero Kathy, just want the best for all of us and I've never been shy about making a scene!
Hugs to all, even the whiners! LOL
Lynne
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ViewsAskew
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I don't see this as an either/or. It's a both. If thewording only talked about pain, then those of us with creepy-crawly would be left out - and according to the research, it seems that those people are at least equal to, if not the majority. It needs both, not one. It needs a way to acknowledge that this can be experienced differently among us.
I really wonder about pain. . .those of you with pain, have you always had it? Lynne, I know you have. Here's what I wonder. . .
Do people with childhood "growing pain RLS" experience "adult" RLS as pain or as a sensation?
Do those RLSers with pain tend to have pain all along, or does it come after a certain point in the RLS progression?
What percentage have had pain all along and what have had it after a certain point or event in their RLS history?
We are truly in the infancy of RLS research. They don't even know what causes it. They aren't even looking at pain right now. But, they will. One day they will determine where pain fits in. Until then, we all just have to find a way to promote understanding and learning. Of course, just my opinion.
I really wonder about pain. . .those of you with pain, have you always had it? Lynne, I know you have. Here's what I wonder. . .
Do people with childhood "growing pain RLS" experience "adult" RLS as pain or as a sensation?
Do those RLSers with pain tend to have pain all along, or does it come after a certain point in the RLS progression?
What percentage have had pain all along and what have had it after a certain point or event in their RLS history?
We are truly in the infancy of RLS research. They don't even know what causes it. They aren't even looking at pain right now. But, they will. One day they will determine where pain fits in. Until then, we all just have to find a way to promote understanding and learning. Of course, just my opinion.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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Penguinrocks
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SquirmingSusan
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becat wrote:Susan, do you feel any different yet? Do they hurt? Tell me everything, because I am thinking about trying them. Snotty nurse better not bruise out Squirming Susan. I'm just hoping it works wonders for you. Does it take long to get a treatment? So many questions.
Lynne, I can't say that I've noticed any difference in my symptoms. If anything, I've had more leg pain the last couple days.
But I don't think I'm really supposed to expect any relief until my ferritin gets up to about 50, and that's a long way off. I get a total of 4 infusions, and that's supposed to bring my iron levels up from 10. Two more and we'll see.
I expected the infusions to hurt, but they don't. A few years ago I had iron injections in my butt, something like 12 of them over the course of a few weeks. Those were painful.
The infusions don't hurt other than having the needle put in the back of the hand. Then I just sit and read or do sudokus while it runs in. The first week was an hour; after that it's a half hour.
I'm probably going to still need to take my daily 150 mg iron pills just to maintain the iron levels when I'm done, but if it's a choice between iron infusions or the pills, I would definitely choose the infusions!
I get my infusions at the outpatient chemo unit, so that might freak some people out. But there's a nice volunteer who comes around with donuts and cookies and drinks, and they take good care of me.
Susan