This is ugly! My best intentions, I swear.

For everything and anything else not covered in the other RLS sections.
becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

Thank you Fulltimemartins, yes, that is why I opened this up to the board.
Discussion.
Thank you.

The tone of what was being shared here was overwhelmingly DRUGS and in my opinion, too many directives about what should be used or how it should be used. It gets to me and has for a long time.

So I took a gamble and wrote what I wanted to say in order for others to weigh in on the issue. It was that, to start this thread, or just come here and work the spammers, delete spam.....hoping someday I felt more comfortable about posting here. Which is a shame for anyone here to feel like are not welcome, it shouldn't be that way. We each belong here if we want to be.

Myself included, I found that we have skipped the education piece, and are quick to send people to a sticky note. The sticky notes are a great reference, put together By Ann, made up of many people's personal posting and research. Awesome gifts for those who know what they are looking for. A good job done by everyone and Ann for collecting and making it more available for us all.

When I was new here, we were in the process of learning that stuff and posting the information we had learned or found. So we learned on a daily basis what is compiled in those sticky notes. It was a great education. I, too, say go to the sticky note, but I wondered out loud here, is that the right way to go about my posting habits.

Our collective knowledge here is outstanding, bar none.

This still happens daily here. THAT IS AMAZING. Makes me proud to be here, be apart of a group that is proactive in teaching the world just what we do know. The how we got here is all personal experiences, the gift of sharing, the knowledge we've gained one day at a time.

I wasn't choosing sides, nor am I asking anyone else. I'm not saying anyone is bad or shouldn't post. That is the last time I will honor that kind of comment or address it. I have made myself completely clear about that. If you want to pick a side, it's your right, but I'm am not requesting that. If you want to single anyone out, do so without my support.

That is not what this thread is about. I had issues with what was lacking in the education about basic RLS knowledge. Again, the WHY part of the questions/answers that have tended to be ignored. And a quick answer is not out there for many of us, many to come here, as well.

This board saved my life and it has become a family for me, a safe harbor for my thoughts and feelings. A place to share with others that understand without me explaining every little detail. A place I do not have to defend myself or my lifestyle, that I did not want in the first place.....just is.

For anyone reading this, it's not a pointing fingers contest. It's about the tone of what we are all about. Medications are important, but are they the soul of this board, the only information we know and are willing to share......? I honestly don't think so.

My posting this was a way for me to get it out in the open to talk about it. Again, this was not a bad idea. I thought this was what the board was about.
Lynne

sugbrendas
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Post by sugbrendas »

When i shared my thoughts on paragraphs it was because obviously something happened here and i can't for the life of me find out. LOL

Anone who types like that,it's fine with me. I just can't read it. And why on earth should anyone need to worry about my tired eyes and very tired brain.
When i'm without sleep for long periods i do it too.
Then i go back and say what the heck! :roll:
Finally able to sleep on average 9 hours a night!
Brenda

Rubyslipper
Posts: 992
Joined: Wed Mar 24, 2004 2:53 am
Location: Missouri

Post by Rubyslipper »

I care about you. I care about your tired brain and eyes. That's why I'll try to do better in the future with my writing. I did not take offense at what you had written. You only pointed out a problem area for you that affects others also. I'm brain dead a large part of the time :wink: myself and sometimes find myself just skimming through a post. You do what you gotta do. The only thing that happened here was a difference of opinion that we are debating. It's not a free- for-all because we all care about making this board the best it can be and we care about each other. I hope you get rest soon. Life is SOOO much better with it!
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

ViewsAskew
Moderator
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

Brenda, I entirely missed Ruby's post that was one paragraph - I thought you were sort of inserting some comic relief or using the great tactic of, "Look over here" to sort of change the dynamic. I was following your lead to lighten things up, not to make anyone more upset. So much for that!

So, Ruby, I truly was curious why you would take it personally, lol. Mostly because, since I have a hard time reading longish posts like that, I have never, ever noticed you doing it. In fact, I don't notice it all that often. When I do, I wish ardently that I didn't find it difficult because I want to get the other person's point very much. It pains me that I find it so difficult.

To anyone who is uncomfortable with those posts, maybe a great thing to do is make lots of posts in other areas. This will help our newer members see another side and that not all things are about drugs. I do think that much of the talk about drugs has increased directly proportionate to the drug advertising. It drives people here to talk about drugs. We can't just turn our backs on people who need that help. But, we can talk about other things, too. And we can gently provide alternate views.

The other perspective is needed and if it's missing, those of who feel strongly about it are the ones that are perfect to be offering it. We all have different strengths, purposes, and desires related to this board. If we each provide what we do well and enjoy, everyone will get a well-rounded view of RLS, treatment, and living with a chronic illness.
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.

Rubyslipper
Posts: 992
Joined: Wed Mar 24, 2004 2:53 am
Location: Missouri

Post by Rubyslipper »

I agree Ann and I wasn't upset about what was written. My post was longer than usual and without breaks. That does make it hard to read. I'm glad someone had the courage to point out that it was a problem for them. All I was saying after that was that sometimes when my brain engages, it doesn't shut off until all the words are out. I get caught up in the moment I guess. But you have to admit the timing of your post after my long ramble was just too perfect. :D So let's let it drop because there was no offense meant or taken. Just a point of view that hit home. This has been a hot topic but I think some things have been taken to heart and hopefully this will make the board stronger than ever.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Post by jan3213 »

Lynne

I want to thank you for starting this thread--it took courage and I want you to know I appreciate it.

Ruby, Lynne and all of you, I can see, from all of your responses, that our main concern is the board, and that's wonderful. Sometimes, it's good to clear the air. It is hard to get the right point across in a post (so much easier when someone hears your voice, sees your face, etc.). Hopefully, this will cause all of us (ME included) to be more aware of what we say, how we say it, and to meet and greet newbies the best way we can (that's for ME, too!).

I hope you all have a wonderful day.

Jan
No one is alone who had friends.

jumpy
Posts: 179
Joined: Mon Dec 18, 2006 9:08 pm
Location: Ms

Post by jumpy »

OK, this might be weird....but I don't know how to make a new paragraph or how to put the faces on the writings...Not too computer smart...any help appreciated...My granddaughter just told me what LOL meant...Pat LOL

ViewsAskew
Moderator
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Post by ViewsAskew »

It's hard to learn this stuff when you didn't grow up with it, isn't it?

To insert a new paragraph, just hit the <Enter> key on your keyboard twice. That will end the current paragraph AND add a blank space between it and the new paragraph.

So if I hit enter once now
I am on the next line, and if I hit enter twice

I leave a blank space.

Those of us used to using online communications take for granted what we know... like lol for laugh out loud, or DH for dear husband and DW for dear wife, etc. Or ROTFLMAO - rolling on the floor laughing my **** off (or ROTFLMBO - subbing butt for the other word).

It's fun to learn all this stuff! We're keeping our brains young :P
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.

jumpy
Posts: 179
Joined: Mon Dec 18, 2006 9:08 pm
Location: Ms

Post by jumpy »

Thanks, Ann...I really need to keep my brain working because my body seems to be falling apart....Pat

sugbrendas
Posts: 234
Joined: Thu Aug 05, 2004 7:28 pm
Location: Balto.
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Post by sugbrendas »

hi jumpy, iwas was wondering where you were!

Some puter abbreviations, my daughter taught me.

LOL-lauging out loud

ROFL-rolling on the floor laughing

ROFLMAO-rolling on the floor laughing my A## off.

dh-dear husband

dd- dear daughter

IMHO-in my humble opinion

:) smile
(: frown

thats all i can think of for now


dh is doing well, still in the hospital. Thank god they are taking their time discharging him.

Brenda
Finally able to sleep on average 9 hours a night!
Brenda

Neco
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Post by Neco »

I must be the only guy who almost never uses that stuff.. I've been on the 'net since I was about 12 years old, but I never really found online speak useful.. except for a few things I guess.

I hope none of you speak 1337, that would REALLY scare me :P

Aiken
Posts: 880
Joined: Thu Jul 14, 2005 6:53 am

Post by Aiken »

Zach--

Heh, I was going to compose a nice l33tsp33k post for you, but I just can't do it. I watched people invent it slowly, mostly back in the bulletin board days, and then it evolved further on IRC. It makes me want to break things... specifically, the things that spew l33tsp33k, or as they call it now, SMS speak. I think there's no better way to get educated people to look down on you.

---

Anyway, more topically, this thread has made me decide to slap a disclaimer into my signature.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

lyndarae
Posts: 620
Joined: Mon Jul 19, 2004 6:55 pm
Location: pocatello,Idaho

Post by lyndarae »

Maybe we should just all go out and look at he moon tonight and think of each other and about why we are here............thats the bottom line RIGHT DANG IF I counted all the time I messed up here I wouod be a rich women with rls heheheh lolololoxoxoxoxoxoxo

doety
Posts: 486
Joined: Fri Sep 15, 2006 4:25 pm

culpa

Post by doety »

Looks like everyone's stopped with the mea culpas, thank goodness.

We offer help here, not salvation. When you get on the board, you have all these choices -- pharms, non-pharms, emotional effects, etc. At one time or the other, I've been helped by each of the forums. Even at my weakest, craziest moments, I've never felt like people were trying to tell me what drugs I should take.

I, like many of you, have been dealing with rls for a long time. Are doctors now a lot smarter than they were 15 years ago? When I first started seeing them, I had to go in with reams of paper and educate them, then I had to tell them what drugs to try.

I don't understand the guilt in the very first post -- I mean, it's the doc who prescribed the medication. And it's the most commonly prescribed one that they give. Regardless of what you said or did, he would have probably given her that.

It almost feels like a cop out when someone says be sure and talk to your doctor, and we're not experts, etc. etc. I think the people on these boards know more than most docs I've seen. Or, is it now being taught in medical school so that we can start trusting that they know a lot more?

I love the compilations that Ann put together about what people have tried -- that says very clearly to me that nothing works for everyone, that you have to experiment to find the right thing, and that there are lots of options. For instance, Mirapex felt like a miracle to me, it was wonderful and I sang its praises, until it stopped working. Then I got help here about why it did and other directions i could take. I also, of course, went to a doctor and for the first time, he took the initiative and talked about options and actually impressed me with what he did know.

I would just hate for anyone to stop talking about what needs to be talked about. And yes, when we're all balled up, can't think because we can't sleep and we're absolutely miserable, we usually want to talk about drugs.

I think you're all great and I don't know what I'd do without you.

lyndarae
Posts: 620
Joined: Mon Jul 19, 2004 6:55 pm
Location: pocatello,Idaho

Post by lyndarae »

for all of us that know ruby it's not even about guilt it's about what a big heart she has.................

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