My RLS Mountain....
Hi Lynne and Emily
Wow! What great posts! I'm not going to say much--don't think there's much I can add except to say that THIS is what support is all about. Sharing our experiences, knowing that everyone is different but caring about each other enough to be honest with one another.
I've been a member here a long time and I'm, obviously, "sappy" and sensitive--sensitive as far as my own feelings are concerned, but I think I'm also sensitive to what other people are going through. I may not always get it right, but I think I "get" it most of the time.
So do the two of you. We, I believe, are here to listen, to let people know that it's okay if this works or that doesn't work for us as individuals..... We are here to uplift, to understand that people are not always in the same place we are at as far as medication, alternative methods, etc. are concerned. In my humble opinion, we are here to offer encouragement, to seek understanding from one another, to lend an ear, a shoulder to cry on, and to cry--allow ourselves the luxery of just letting go to others who WILL understand.
All this may sound like silly jibberish, but I've learned a thing or two (hopefully) these past several weeks --- and one very imprtant thing I've learned is the value of TRUE friendship, of TRUE support, and of TRUE concern. I've been shown, once again, that I am so very glad this forum exists and that I've been privileged to meet so many wonderful people.
I've completely gone off on another "Jan" tangent, but maybe not--maybe you will understand what I'm trying to say.
Wow! What great posts! I'm not going to say much--don't think there's much I can add except to say that THIS is what support is all about. Sharing our experiences, knowing that everyone is different but caring about each other enough to be honest with one another.
I've been a member here a long time and I'm, obviously, "sappy" and sensitive--sensitive as far as my own feelings are concerned, but I think I'm also sensitive to what other people are going through. I may not always get it right, but I think I "get" it most of the time.
So do the two of you. We, I believe, are here to listen, to let people know that it's okay if this works or that doesn't work for us as individuals..... We are here to uplift, to understand that people are not always in the same place we are at as far as medication, alternative methods, etc. are concerned. In my humble opinion, we are here to offer encouragement, to seek understanding from one another, to lend an ear, a shoulder to cry on, and to cry--allow ourselves the luxery of just letting go to others who WILL understand.
All this may sound like silly jibberish, but I've learned a thing or two (hopefully) these past several weeks --- and one very imprtant thing I've learned is the value of TRUE friendship, of TRUE support, and of TRUE concern. I've been shown, once again, that I am so very glad this forum exists and that I've been privileged to meet so many wonderful people.
I've completely gone off on another "Jan" tangent, but maybe not--maybe you will understand what I'm trying to say.
No one is alone who had friends.
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cornelia
Hi Becat,
I'm with you on wanting to stay away as long as possible in regards to using methadon.
During the last few years I have been nagging my neuro to give me meth, basically because I had read many positive reports about people who said it it had given them their life back. Boy! Am I waiting for such a day of resurrection. He denied me the med, said it should be the last resort. But soon I suppose he will give it to me, as I am running out of options. And the strange thing is that I actually don't want it anymore; too afraid to try the last resort en scared out of hell that it won't work. Maybe this sounds a bit like what you feel Becat.
Corrie
I'm with you on wanting to stay away as long as possible in regards to using methadon.
During the last few years I have been nagging my neuro to give me meth, basically because I had read many positive reports about people who said it it had given them their life back. Boy! Am I waiting for such a day of resurrection. He denied me the med, said it should be the last resort. But soon I suppose he will give it to me, as I am running out of options. And the strange thing is that I actually don't want it anymore; too afraid to try the last resort en scared out of hell that it won't work. Maybe this sounds a bit like what you feel Becat.
Corrie
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Penguinrocks
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Penguin chiming in...
well, for me personally Lynne, I applaud your decision. Working where I do, I have seen the affects of what methadone can do. It's scarey as beealzabubs pad!
I know I know, a doctor can regulate it better that off the street stuff, but a doctor isn't with you 24/7
now, this doctor of yours. Having a bad day or something?!?!?!?!?
I'm totally interested in your accupuncture trip. If i wasn't such a wuss with needles, I'd be there!
Don't know if i told ya, but Doc took me off the Sinemet that my neuro put me on and he gave me paid meds instead.
can't say that it's helping with the rls, can't say if it's helping me sleep better. can't even say if it's helping with the pain cuz i can't take them during the day.
can say, i'm tired.
When you get to the top of this mountain, i know things will be good for you and the site? Well, maybe the site will be all of us here at RLS.org standing together just as we are now here in this valley.
I noticed the moon growing bigger last night. It's almost half now. I saw you all there. I hope you all can see me, too.
Love you, much love to you all
Penguin
well, for me personally Lynne, I applaud your decision. Working where I do, I have seen the affects of what methadone can do. It's scarey as beealzabubs pad!
I know I know, a doctor can regulate it better that off the street stuff, but a doctor isn't with you 24/7
now, this doctor of yours. Having a bad day or something?!?!?!?!?
I'm totally interested in your accupuncture trip. If i wasn't such a wuss with needles, I'd be there!
Don't know if i told ya, but Doc took me off the Sinemet that my neuro put me on and he gave me paid meds instead.
can't say that it's helping with the rls, can't say if it's helping me sleep better. can't even say if it's helping with the pain cuz i can't take them during the day.
can say, i'm tired.
When you get to the top of this mountain, i know things will be good for you and the site? Well, maybe the site will be all of us here at RLS.org standing together just as we are now here in this valley.
I noticed the moon growing bigger last night. It's almost half now. I saw you all there. I hope you all can see me, too.
Love you, much love to you all
Penguin
Beware the Penguin
Well, I re-read what I wrote, and I'm not sure I got my point across good enough.
I, too, applaud your choice, Lynne, not to use methadone, to try accupuncture, or to do whatever YOU feel it takes to help you at this time. It just makes my blood boil that your doctor actually said you just might like living like this! How dare he!!!! Just because you didn't follow him blindly like a lemming off the cliff!
Yes, you ARE young enough to hold off on some things to extend your choices down the road. But, heck, even if you were 80 or 90, I'd feel the same way! This is YOUR life, no one else's. And, because you choose not to use something that seems to be working for someone else is not only your choice, it's your right!!!
Now, back to my point about support. Because you are being careful about what you use, it doesn't mean that you can't talk about your struggles with RLS, your bad times, your quality of life. This is, as I said before, a SUPPORT BOARD and we support each other, listen to each other, cry with each other, share joy with each other---we are supposed to be here for each other--through good times and bad. If someone asks for advice, and one of the members can offer a suggestion, great. But, how many times have we said everyone is different? No one should feel apologetic because something didn't work for them, because they don't feel like they can't quit taking a certain drug (like me with Miriapex) because of fear or whatever.
Sometimes, I think in the midst of the battle we fight every day, we forget the humaness--the struggles we have just living--the hurts and needs we have that are as simple (to some) as making it through the next hour.
Lynne, I'd like to put your doc and my "bad" neuro together in a room and lock the door. Remember when he told me that I needed to see a psychiatrist to learn to manage my pain? Remember when I called you from the parking lot and cried on the phone to you for I don't know how long?
Support---that's what support is. Listening, sharing, telling each other thins we wouldn't dare tell someone who doesn't live in our world. Support is love, compassion and acceptance.
Look up support in the dictionary, Lynne. I think you'll see a familiar face there.
Love and the MOON!
Jan
I, too, applaud your choice, Lynne, not to use methadone, to try accupuncture, or to do whatever YOU feel it takes to help you at this time. It just makes my blood boil that your doctor actually said you just might like living like this! How dare he!!!! Just because you didn't follow him blindly like a lemming off the cliff!
Yes, you ARE young enough to hold off on some things to extend your choices down the road. But, heck, even if you were 80 or 90, I'd feel the same way! This is YOUR life, no one else's. And, because you choose not to use something that seems to be working for someone else is not only your choice, it's your right!!!
Now, back to my point about support. Because you are being careful about what you use, it doesn't mean that you can't talk about your struggles with RLS, your bad times, your quality of life. This is, as I said before, a SUPPORT BOARD and we support each other, listen to each other, cry with each other, share joy with each other---we are supposed to be here for each other--through good times and bad. If someone asks for advice, and one of the members can offer a suggestion, great. But, how many times have we said everyone is different? No one should feel apologetic because something didn't work for them, because they don't feel like they can't quit taking a certain drug (like me with Miriapex) because of fear or whatever.
Sometimes, I think in the midst of the battle we fight every day, we forget the humaness--the struggles we have just living--the hurts and needs we have that are as simple (to some) as making it through the next hour.
Lynne, I'd like to put your doc and my "bad" neuro together in a room and lock the door. Remember when he told me that I needed to see a psychiatrist to learn to manage my pain? Remember when I called you from the parking lot and cried on the phone to you for I don't know how long?
Support---that's what support is. Listening, sharing, telling each other thins we wouldn't dare tell someone who doesn't live in our world. Support is love, compassion and acceptance.
Look up support in the dictionary, Lynne. I think you'll see a familiar face there.
Love and the MOON!
Jan
No one is alone who had friends.
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Penguinrocks
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- Joined: Thu Mar 17, 2005 6:03 pm
- Location: Massachusetts
- Contact:
Emily,
There is a student who is a serious drug addict. Methadone. He needs to go to a Methadone clinic for treatments to try and "come off" of the addiction.
He scares me. He will stand in the middle of the hallway and fall asleep standing up. He gets angry. Having the past I've had, I can't be anything but scared of him.
It's just an awful thing that I've seen this do to a person.
I hope I've not offended anyone. It was not my intention.
Love Penguin
There is a student who is a serious drug addict. Methadone. He needs to go to a Methadone clinic for treatments to try and "come off" of the addiction.
He scares me. He will stand in the middle of the hallway and fall asleep standing up. He gets angry. Having the past I've had, I can't be anything but scared of him.
It's just an awful thing that I've seen this do to a person.
I hope I've not offended anyone. It was not my intention.
Love Penguin
Beware the Penguin
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Rubyslipper
- Posts: 992
- Joined: Wed Mar 24, 2004 2:53 am
- Location: Missouri
Sometimes strange things happen that we have no answer for. You all know by now that I am not a regular visitor to the board; I come when I can. But like most of you I have it set to notify me when something is posted on a thread that I have posted to. When I went to my email, I had the information that a reply had been posted to one of my posts but I didn't recognize it--My RLS Mountain. I clicked on it anyway and what comes up but Becat's heartfelt story of struggle. I hadn't posted to this thread, hadn't even read it. But something caused it to show up and get my attention. The ways of this world never cease to amaze and delight me. Becat what you have been going through breaks my heart. Do we trust our doctors or ourselves? Of course you already answered this...we trust our bodies because we are the ones who live in them and know when things aren't right. But what if we're wrong? We spend time second-guessing ourselves and worrying that we did the right thing. One thing I have discovered, there is no wrong or right thing with RLS. We are struggling with an enemy that has everone but us convinced doesn't exist or if it does is truly not as terrible as we say it is. My co-workers went through an RLS Awarness week at work, all the information, a door prize etc. and seemed to appreciate the info. But not ONE of them asked me what it was really like. I was quoted in an article in Missouri Life this month. I was excited about it and took it to work. Not one person read it. I have good friends there but RLS is just a thing I talk about sometimes, it doesn't affect them so who cares? Maybe all this work and talk about RLS Awareness is for nothing. We don't seem to make any progress except with those who have it and find that they are not alone. And I guess that's the reason we try to get the word out...for others who suffer like we do. I have read recently that in medical school, sleep disorders of any kind are seldom discussed. It's just now becoming evident that lack of quality sleep is so important so a new field of medicine is opening up. That's great, but I would venture to guess that RLS is still a long way down on that list. What does any of this mean? Not a %$#@* thing really, I'm just rambling. We can work and work and as for me I will continue to do the best I can to educate others about RLS. But mostly it comes down to this. We have each other and we have to be able and willing to reach out to others when they need us. Something about this thread was important enough that it came through on my computer when it shouldn't have. Long post--hope you wern't bored silly. Becat my darling, hang in there. You are smart and you know what your body is telling you. Let us know what happens. As always, we are all here and tonight I think Mr. Moon may be hearing from me. He's always there, just like you said, even if we can't see him...he sees us. Love, Ruby
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)
And then somedays I am reminded just how lucky a girl I really am.
In due time we will have made a difference, count on it. We already have in some cases and still have the chance to in many others.
Ruby, I'm glad God sent you my way, I'd never know what it was like to fly without you.
I'm truely exhausted, and what is just my thought right now. I said it, someone is reading it, and truely understands where I stand.
There have been many days that for so many here, that is golden.
To be understood in the shoes I walk miles in a night with.
Yup, Mr. Moon hears from me every night and know for a fact, this family is in those words, rising up into the night sky.
Love to you all,
Lynne
In due time we will have made a difference, count on it. We already have in some cases and still have the chance to in many others.
Ruby, I'm glad God sent you my way, I'd never know what it was like to fly without you.
I'm truely exhausted, and what is just my thought right now. I said it, someone is reading it, and truely understands where I stand.
There have been many days that for so many here, that is golden.
To be understood in the shoes I walk miles in a night with.
Yup, Mr. Moon hears from me every night and know for a fact, this family is in those words, rising up into the night sky.
Love to you all,
Lynne
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ViewsAskew
- Moderator
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Wish I had something smart and well-written to add. . . but I don't. Hang in there, Lynne. It is what it is - you are doing the best you can. If it doesn't work, you'll do the next best thing. If he doesn't work, you'll find the next best thing. In the meantime. . .just hold on.
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.
i hope you are getting some sleep lynne, don't make go for the rolling pin!! i am glad you stood up for what you believe in. i don't like taking the pain med, but i would have to quit my job and i just can't do that right now, what i can do, and i haven't told my doc yet is that i regulate when i take the sinement. i told someone the other day, this is a parkinson's drug, i don't have parkinsons. what is this drug going to do to me in the next few years? drs don't know. right now they are pretty much grasping at straws on a lot of the meds we take. (my opinion) i take the sinement when my legs are extremely bad or i have to take a long trip. i am like the rest of you, being a guinea pig is not my idea of fun. but i guess to get an end result and a cure, someone has to be the pig! have any of your doctors explained the possible future side effects of taking another diseases medicine? mine hasn't. i plan on asking him my next visit in dec. i didn't sleep worth a hoot last night, so i am about to fall asleep on my keyboard. hopefully this ramble makes sense.
dee
dee
I feel like a science project!!!
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945