Posting and stuff

Anything on your mind that isn't about RLS? It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.
Rubyslipper
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Location: Missouri

Post by Rubyslipper »

I hate confrontation in any form. The locked post made me ill. With all the trouble we have in life, why must we heap more on each other here? This has been my source of support, love, encouragement and a place to vent my feelings. That is why it was created. But it doesn't mean that you don't have to play by the rules. Pot-shots are not allowed.

I have waded through large fonts, misspelled words, abbreviations I don't understand, shortcuts with words (u for you), bad or no punctuation, inserted pictures, emoticons, weird hair and tapping ruby slippers in avatars. If you can't get past those, then you can't help the people who need you. Isn't that why we are here? To give and receive help?

People are intitled to their opinons. But just because you have an opinion doesn't necessarily mean you have to share it with everyone. Every pointing finger just has three more pointing back at you. Yes, that includes me.

If this is the way the board is going to continue, then I'm not sure I want to be a part of it any longer. I am not taking sides here, I think both people could have handled it all better. We are supposed to be here for each other; what happened?
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

Neco
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Post by Neco »

I don't like confrontation as much as I used to, but at the same time I'm not a fan of telling people what they can and can't say, or argue over.

I just view it as human nature, people are going to argue, sometimes over stupid things. But given the nature of this board and its goal then I can respect why people don't like to see that here.

That's all I have to say about that.

Aiken
Posts: 880
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Post by Aiken »

I do have one thing I wish to say in public, directed towards the people who are saying that I did something bad. The link below takes you to my one, and only, post in that part of the thread. Please take a moment to read it.

http://bb.rls.org/viewtopic.php?t=6315& ... c&start=14

I can't say for sure, but I think some of you may be confusing me with some of the later posters. I had nothing to do with any of that, and my tone was not in the same vein at all.
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.

Rubyslipper
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Post by Rubyslipper »

Actually I wasn't talking about just that incident. I'm talking more about every post. Common courtesy, respect for others, support and the old "walk a mile in my shoes" idea.

Yes, there will always be conflict, arguments and such. But attacking another person in any situation is unacceptable. Better to let it go, take the high ground if you have to and leave it be.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

ViewsAskew
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Post by ViewsAskew »

This is from Ann, not ViewsAskew the moderator. Of vice versa...whichever, it's the one of me who isn't speaking as a moderator, but just a member of humanity.

If I look at this board, collectively, I see encouragement, joy, helpfulness, comfort, support, guidance, concern, care, and much much more in 99 percent of the posts.

For every time we have one post or thread that is controversial in some way, we have 100 or more that are filled with some of the most caring people in the world.

It's easy to focus on this stuff when it happens, but anytime you think, "Oh, crud, there are people arguing or hurting each other," go read this post:

http://bb.rls.org/viewtopic.php?t=6006

Or this one:
http://bb.rls.org/viewtopic.php?t=6119

Or this one:
http://bb.rls.org/viewtopic.php?t=5774

Quite honestly, I just went and clicked on three completely random topics. I didn't know what I'd fine. But in each one of them, I found the whole reason we come here. I found a gazillion words of compassion and kindness and hope and even love.

I am not trying to diminish that when we have problems that are traumatic; but I really see this board as being one of the best places in cyberspace. I don't see people being vindictive, hurtful deliberately, or sniping at each other. I see wonderful people. People who share their time, their knowledge, and their wishes for a better place for all of us.

The thread that was locked and this thread have a collective 15-20 posts. And not all of them are negative. There are currently more than 41,000 posts on this site. I bet that no more than 100-200 of them could be considered in any way negative. To me, that says it all. This is an amazing place.
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.

snowbound
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Post by snowbound »

ViewsAskew wrote:This is from Ann, not ViewsAskew the moderator. Of vice versa...whichever, it's the one of me who isn't speaking as a moderator, but just a member of humanity.

If I look at this board, collectively, I see encouragement, joy, helpfulness, comfort, support, guidance, concern, care, and much much more in 99 percent of the posts.

For every time we have one post or thread that is controversial in some way, we have 100 or more that are filled with some of the most caring people in the world.

It's easy to focus on this stuff when it happens, but anytime you think, "Oh, crud, there are people arguing or hurting each other," go read this post:

http://bb.rls.org/viewtopic.php?t=6006

Or this one:
http://bb.rls.org/viewtopic.php?t=6119

Or this one:
http://bb.rls.org/viewtopic.php?t=5774

Quite honestly, I just went and clicked on three completely random topics. I didn't know what I'd fine. But in each one of them, I found the whole reason we come here. I found a gazillion words of compassion and kindness and hope and even love.

I am not trying to diminish that when we have problems that are traumatic; but I really see this board as being one of the best places in cyberspace. I don't see people being vindictive, hurtful deliberately, or sniping at each other. I see wonderful people. People who share their time, their knowledge, and their wishes for a better place for all of us.

The thread that was locked and this thread have a collective 15-20 posts. And not all of them are negative. There are currently more than 41,000 posts on this site. I bet that no more than 100-200 of them could be considered in any way negative. To me, that says it all. This is an amazing place.

I promised myself i wouldn't post in this thread for reason's i won't explain but after reading Ann's post i have to say, well done. Imo, her thoughts says it all about this wonderful place.

Thanks.
A man generally has two reasons for doing a thing. One that sounds good, and a real one. ~ J. Pierpoint Morgan

HeatherB
Posts: 116
Joined: Mon Jun 30, 2008 12:00 am

Post by HeatherB »

When I come here I need help and or comfort. I enjoy every ones avatars. Not to be mean Aken, but I can't help but laugh every time I look at your hair. I love it. I giggle every time I see Ruby's slippers, or the Care Bear one, sorry, don't remember who's that one is.

My point is, I think it don't it matters what your avatar is. What matters is that we are all here to help each other.

I haven't been a member very long, just a few months. I joined just after I found out I had RLS. You can imagine how relieved I was to find this place. I have no support group in my area. You guys and girls are my support. You all are my backbone some times.

I hope we can all move beyond all of the bickering and continue to help each other. I don't want to lose this place and all of you.
Last edited by HeatherB on Fri Oct 24, 2008 5:58 pm, edited 1 time in total.

Neco
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Post by Neco »

What Ann said....

Polar Bear
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Post by Polar Bear »

I have always thought of this site as supportive and never in any other way. I'd be lost without it. You are all my friends.

There is encouragement, quite a few laughs, and only a few 'hiccups'. And sure, we can't go through life without the odd hiccup.

Thank you Ann, I echo all you said.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

sardsy75
Posts: 862
Joined: Thu Mar 18, 2004 8:56 am
Location: Queensland, Australia

Post by sardsy75 »

Being the "oldest" member of the board ... relatively speaking only ... Since the "inception" of the Discussion Board i've seen, read and been a part of a heck of a lot of things.

The bulk of them ... What this Board was designed to do ... Create a welcoming, familiar, helpful atmosphere to those who are in distress, just want to ask a question, or whatever.

As Ann said, there are more than 41,000 posts on this site ... 99% of them positive.

As Betty said, yes, as a "family group" we're certain to have hiccups from time to time, and one of those times just happened to be during this week.

We're human!

To tell the honest truth, whilst I was rather upset and disgusted at the thread in contention at the moment, compared with some of the "Trolls" that used to frequent this board during our early years, my gosh, this was tame.

I can be (and have been) out there and say what's on my mind, but I still keep in mind WHO it is that i'm talking too, and 99% of the time, I'm talking to the people who understand what it is we each go through.

The large fonts definitely do give me a problem, but hey, I get over it! I know, who am I to talk when I've done different coloured fonts here there and everywhere; come in with completely different persona's (Ms's Jeckyll & Hyde) but I don't think i've ever used large fonts just because i'm mad and/or want to get my point across.

Long before the Moderator's came into existence, I was pretty much the loose cannon around the place; I freely admit that. I'm an Aussie ... we call a Spade a Spade and are likely to slap you upside the head with whatever frozen fish is on hand if you're doing something completely idiotic. Planting both feet in our mouths at once is also not uncommon. Yes I've just made a total fool of myself, but hey, thats who I am! I dunno how many times I had my caboose hauled across the hot coals for defending people and the Board in general, but ... I learnt from it (don't always stick to it, but ... learnt from it lol).

I've made so many lifelong friends here I would be utterly devestated if this Board was to become a place where we could no longer speak our minds freely. The Moderators, present and past, have had a big responsibility put on them ... at the request of the Foundation. They do the job and often get berated for doing it. It is also extremely hard for them to differentiate between being a Moderator and a Discussion Board Member who goes through exactly what the rest of us do every day ... live with this torturous thing called RLS.

What am I trying to say? Well ... This Board is a second FAMILY to me. Gosh, you've seen my thread, and sometimes wonder at how I keep going! If this Board was to be taken away, or Moderated to a point where it went from a democratic place to a dictatorshp, to me, it would be as though I had lost an entire part of my family.

Since I joined this family, I've laughed, I've cried, I've crawled in here at the most deepest, darkest moments of my life, I've been through a marriage break-up, going through the humiliation of being nearly 30 and living back with my olds, figuring out what single life is again, figuring out who would love a dump of medical problems like me ... and then most importantly, as those in my email list and those regulars on the Board have seen me talk about endless times ... finding the man who fell in love with me AND my dumpload of medical problems on, and I, falling in love with him ... and ... his three beautiful daughters.

This Board, the members, you have become and are a part of my life, some longer than others of course, but you've helped me through some deep dark times, held me in your thoughts and prayers when a close personal family friend passed away from MSA (Multiple System Atrophy), were happy with me when I found out that Robyn had done the most unselfish act by donating her brain to science so that her Neurologist could study it and hopefully help other MSA sufferers; you then held me in your thoughts and prayers, again, when I found out that another extremely close family friend is also suffering with MSA and has only a few years to live. I recieved an email from her during the week. She is terrified of going to sleep for fear of choking.

In my "real day-to-day life" (i.e. when I'm not sitting glued to this here computer, I don't have many friends. I've never made friends easily. I lost a LOT of friends when I chose to do that hair-brained detox back in 2006. It was the family and friends on this Board who helped me the most during that time. Some even calling me a Hero for doing it. But, I dont see myself as a Hero. It was just something I had to do to try and get this blessed disaster of a body back under control.

I'm rambling ... I know ... when don't I???

What the heck are you trying to say woman?

Well, I dunno. To me, this Board has saved my life. To others, it's a place to have a gander and see whats going on; maybe ask a question from time to time.

There has been a changing of the guard with the Moderators. I respect that and I respect the Moderators. With the changes, the Board has changed. Medications/cocktails/doses/yada yada yada has become almost a priority topic, where-as 2-3 years ago, our focus was to get ourselves noticed within the Medical Fraternity. The first Quality of Life Statements was our fist big "mission" and for a handful of people, we managed to pull off what seemed at the time to be an impossible task.

So, yeah, the Board has changed in the way things are discussed. I don't see that as a problem.

The ONE thing I would HATE to see is that we become too self-absorbed within getting RLS noticed (or a name change lol) and forget about those members who've only just found us, and those who've only been with us for a short while.

There is a heck of a lot of information on this Board, and I tested this on a couple of people. To come in as a stranger, not knowing what to do, what to ask or who to ask, it's a pretty scary place!

This Board has a Heart ... A very strong heart when we want it to be ... and it is the last thing we need to lose.

So, i've only contributed 700-odd posts in nearly 5 years. I don't measure my giving in numbers. There's the hundreds of PM's and the thousands of emails that come hand in hand as well. No, I don't have the time I used to have to be hear to help our new members, and that does tear at me inside because I know what its like to have a million questions and suddenly find a place that might have the answers to a few of them, and then hope that someone will take the time to listen.

We are a family. We are human ... and human's stuff up once in a while (as do family's). Do not lose sight of the huge HEART that makes up this Board, because once that goes, everything we've worked for and strived for is lost forever.

Peace ... Out ...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

N.B.

Whilst typing this i've been banging my legs around tryng to pound out my THIRD broadside attack in 24 hours! I've got a lil more clonazepam and codeine in me than normal. That does not mean to say that I don't mean every single word that I wrote above. If what I just wrote here has made no sense, I will not blame you for laughing ... coz I am lol.
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!!!

ViewsAskew
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Post by ViewsAskew »

Edited to clarify an incomplete sentence.

Nadia, your post reminded me that no matter how hard we try, things change whether we want them to or not. Only we can decide how we handle that change.

I might quibble about how much the moderators affect the tenor of the board. I'd argue that it's the members who drive it. I am a mirror - I post little on my own. If people post about needing quality of life, I focus on that. If they focus on medical treatment, I focus on that. Same with whatever topic is at hand. And, if I look at Susan, Mark, Lynne, Jan, Trevor, Hazel - all mods past and present, they tend to do the same.

The feel of this board truly is based on what all of the members collectively write about, ask about, want help with. Over time, that changes. Or, more accurately, it ebbs and flows.

I've said this before and I honestly believe it and don't think I'm deluding myself: if anyone does not like the tenor of the board, all they have to do is start writing posts that are about what they want to see here. If a person wants more supportive posts about quality of life? Lead the charge. If you want to see in depth discussions about alternative treatments? Do some research and start posting. If you need help, give some and more help will come your way than you could imagine.

To that end, this board can be what every person here needs, given that it respects the other people here, too. Will it always be only about what I need, or Nadia needs, or Fidgetboy needs, or Momo needs? Nope. But whatever effort anyone puts in, they will get it back twofold.

And, whatever focus someone want, if they put in the effort to get that focus, they will be a pied piper of that.
Last edited by ViewsAskew on Sat Oct 25, 2008 10:31 am, edited 1 time in total.
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.

Neco
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Post by Neco »

I see the merit in those ideas experessed, but playing devil's advocate here (my fav past time I guess), I would argue that Mods if not deciding the tenor, set the tone for what is and isn't considered allowable.. i.e a little infighting now and then over non RLS stuff.

To that degree mods have a very powerful influence in shaping the topics of discussing and acceptable behavior, just as much as any member could. The only difference being a moderator has the ability to stamp out anything they see that they don't agree with, and quash any movement in "that direction". I'm not accusing anyone of doing that, just stating something I as an experience forum moderator know myself.

I have been heavily involved in shaping the rules, and enforcement of those rules where I currently moderate, and to be honest about it, I do it with an iron fist.. When I step into a conversation or lock a thread everyone knows I had a legit reason.. But I still don't place myself above my board-mates, and I think that is what makes me a little different from most mods I know, and not necesarrily the people here.. I'm not afraid to reopen a thread, or admit I may have jumped the gun, or judge a situation wrong.. Something you don't see from ANY moderator on the Internet very often..

So that's my perspective. Mods ARE community members too, so they also have a certain right to shape the way discussions go, and enforce the rules how they see fit, as long as it stays reasonable.

I do find it a little conflicting to hear on one hand that we only need speak up if we want the board to go a certain way, and it will happen.. Because in this situation in particular where these types of fits happen, they ARE stamped out early on, and that doesn't seem to jive with the whole idea we're espousing..

I'm not advocating that we should all be free to argue 24/7 in multiple threads, but I think a little more freedom in letting the event play itself out isn't going to hurt anyone.. We actually had this second thread spawn because someone didn't get to contribute their say, and they felt strongly enough the need to say it.

I don't want to drone on and on about the technical merits of my alternate view however.. I'll just acknowledge that this forum seems to be a very special case.. We're a small group fighting for normalcy and acceptance within the world population.. So many of the things that pass on other forums, frankly, aren't in our best interest to show the world.. Infighting, random threads that could degenerate into something else, god, politics, etc..

I won't lie that I feel confined, even in the "non-RLS section".. But so be it I guess.. As a personal addendum I think its all for naught... It's like the well-to-do family hiding their teenage daughters pregnancy in a small conservative town where, ironically the teen pregnancy rate is out of control.. The cat is out of the bag all around us, so to speak.. Infighting is a natural law of Internet Forums, if you didn't understand the first part.. No use trying kill it before it happens.

Well that's my thoughts..

ViewsAskew
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Post by ViewsAskew »

No question, Zach, that how the mods write and what we jump on absolutely contribute to the tenor. I think I was speaking more to the argument I hear that we only talk about drugs these days. That's a generalization, but the some people feel that the focus of the board has changed.

That's what I meant when I said that the members control it. If members write about drugs, so will most of us...and most other members. About 6 months ago, people were vocal that we spent too much time talking about drugs and not offering other support. At that time, the tenor changed. Several people stepped up and started posting about other stuff. That kept up for awhile and then it swung back a bit. I don't think the mods encourage or discourage either type...at least I hope not.

Does that clarify what I meant?

I agree completely that this is a special place and not like many other internet boards. We are focused on RLS. As you said, not religion or politics except as they affect our RLS. We want better treatment, to be understood, to increase awareness. Many things don't have a place here. And, in my time here, I just can't remember much time where it was focused on anything but RLS.

I also am interested in your feeling that you are limited. What makes how we post now different than before - say two years ago? The only difference I can think of is that some people have indicated that they don't like conflict and they want everyone to get along. Again, a generalization, but that's what I take from the posts each time there conflict.

Zach, what do you feel you can't do here now that you used to do? If I read posts from 2004, they aren't much different from the posts today.

I wish I knew how far to let things go, as in your example. We don't always agree as mods. What is too far for Mark may be fine for me or vice versa. As you intimated, each board makes that decision; on some, you can say anything in any way. In others, if you don't tow the party line, you are outta there before you know it.

I do think, to a great degree, the mods here have attempted to take our cue from the membership as a whole. There are people here who write to us and want us to rule with an iron fist. I get PMs telling me we should be much more forceful and get people in line. On the other hand, I know that some people think we shouldn't even be here - that the board can manage itself just fine.

We have a moderator only section where we really try to hear all of you and take the road that allows the most people on it. We don't take that twisty, rocky, mountain road of laissez faire, because it exposes a lot of people to stuff they don't like and thing shouldn't be here. We also try not to take that straight and narrow, because that also excludes a lot of folks. Most of the time, we try to take a wider, larger throroughfare with multiple exchanges, in which most of us get most of what we want and in which we tried to ensure that no one is hurt or gets all the benefit to the exclusion of everyone else.

If people perceive that we are doing abysmally at that, please let us know.
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.

sardsy75
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Location: Queensland, Australia

Post by sardsy75 »

Ok ... since my legs are still goin at it, I might as well put my fingers to use as well.

Zach, you say you feel limited in this section about what topics can be discussed.

Well ... there's only two things that jump to the front of my mind that would be on the "Do NOT Discuss" list for this section: Ye ol Religion and Good ol Politics. They're pretty much a given. Oh, and, War ... In General.

When my RLS was first properly diagnosed in 2003, I spent hours trawling the net looking for information ... and other people with this strange sounding and gawd-awful affliction.

At the time, this discussion board didn't exist, and I ended up in one of the Yahoo Group RLS thingy's. Yep, great, people I could relate to! Until someone brought up the topic of good ol "Happy Grass" ... good grief i've never seen such abominable arguments and fighting amonst people who were supposedly there for each other and to discuss things.

Happy Grass ... I can't be bothered going to find just how many times the topic has be brought up on THIS discussion forum, but I know it's way more than once and some of those who have brought it up have commented that it was nice to be able to discuss the topic without being jumped on by the rest of the "mob".

Cripes, I think ol Jumpowl started a thread on whether sex was a way of relieving an RLS attack. It was a valid question and it went on to be quite an interesting discussion.

I know way back in 04 or 05 I started a thread called "Comic Relief" to let those out there struggling along just as I was, that there was still time to have a laugh. Jeepers, with the number of jokes I get on my mobile phone and via email every day, I could probably ressurrect (sp?) it, coz, yeah, sometimes, if not a laugh, the least we could do with is a smile.

There were some very contentious Trolls that came into our midst early on who personally attacked some of us. It got very ugly and because the Moderators weren't in existence at that point, we could do nothing except ignore them, or beat them at their own game by burying them in more information than they could digest (it worked!).

If you want to deliberately bring up contentious topics though (none that I can think of right now), well, then you're bringing the foot down on your own head if it gets out of hand.

Righto, if you wanna play devil's advocate, go right ahead Zach. I'm not pullin for an argument here, but if a Mod's foot comes down, then "I told ya so" just won't quite fit the situation.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Now I'm gonna try and convince Troy ... for about the 49th time tonight, to take me fishing!!! I wanna go fishing!!! He doesn't wanna take me coz of my legs ... Grrrrr .... LMAO .... See ... I'm just a goofy Aussie :lol:
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!!!

Neco
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Post by Neco »

It's not so much what I feel I can't do that I used to be able to do, but what I can't do that I've never felt I was really able to do..

Just as an example, many of you know when I am having a bad period, I tend to lash out at "god" in general. Address him in a somewhat less than respectful manner or call him names.. I've never felt that I singled out any one religion or member's beliefs, but at the same time when I got a PM from a mod asking me to stop doing that I begrudgingly started censoring myself. I'm all for equal treatment and the like, so it bothers me when I have to censor my posts because I might offend other people, effectively singling myself out because of MY beliefs, and arguably offending me as a result.

Now I don't have a problem with this, as I rather easily assimilated to that standard and didn't need any unnecessary grief.. It's just an example of a recent (within the past few months I think) event. I guess I'm one of those people who doesn't believe simply badmouthing someone or thing is an attack on someone elses beliefs..

As for in general.. To be honest there isn't a lot I would probably start posting about if I were given free reign, mainly because of my age difference, I really don't have a lot of things to discuss with my peers here.. But when I do post something, or respond to another post sometimes I find myself second guessing what I'm about to say because I don't know if I'm supposed to be bringing a particular topic up..

Even along the line of politics, war, religion.. I have no desire to start entire threads on the subjects, but if I make an off the cuff remark about something like that, I remain curious about whether or not I'm going to be asked not to mention it, or edit my post.

At least with me, it's the "little" things like minor comments or brief forrays into sensitive subjects where I feel constricted. I guess I feel lacking in lattitude to briefly bring up certain topics, as opposed to opening full-on debates over them; and again allowing threads where we're at each others throats to play out.. Sometimes we need to get that out of our systems, so we can explore why things are being said or where tension between members (that leak through into other threads) can be explored.

I'm not really calling for any kind of censorship wall in particular to come down, I just can't help but admit I have a certain aversion to discussing anything NOT related to RLS on this forum, and the way I see it, that feeling had to come from somewhere other than me.

I assimilate any given social environment rather easily (speech and attitude), so in the end its of no real trouble to me, though.

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