WHAT IS THIS BOARD TO YOU #2

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.
Sojourner
Posts: 1657
Joined: Tue Dec 05, 2006 5:56 am
Location: USA

WHAT IS THIS BOARD TO YOU #2

Post by Sojourner »

Feel free to post on this or the original "What is this board to you" thread. However, I am respectfully asking that if you do post on this thread that you stay as tightly on topic as you can so this thread can perhaps have a distinct identity. Best wishes.

M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

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

Post by sardsy75 »

Hey Mark

Yes, I'm here, but not.

Having spent the last four days sitting in hospital with my eldest stepdaughter (she had acute appendicitis with subsequent surgery), I've been mulling over what this discussion board REALLY means to me.

I hope it makes sense and helps you out. If not, let me know and I'll clarify any points or answer questions.

The RLS Discussion Board has literally been a lifeline for me; on more than one occasion. I would be lost without it. When I’ve needed advice about meds, there are people here who come to my aid. When I’ve needed to vent after not sleeping for two weeks, there are people here who come to my aid. When I’ve been down in the dumps in general, there are people here who come to my aid. When newbies have come aboard, scared and unsure about the unknown, I’ve done my best to go to their aid. When people have asked about medications I’ve had experience with, I’ve done my best to go to their aid. This is a unique family. To me it’s like I’ve got many brothers and sisters … and since when did brothers and sisters not have the odd disagreement???

My general rule of thumb when it comes to this Discussion Board is to first check the list of new posts that have been made since I last logged in under my nic. It only takes a minute or so to check out any topics that I may have posted to, or have been following with interest.

Then I go back to the main page and start from the top and work my way down. Checking each thread, I look to see if there is anything I’ve missed or do a search to find some specific information that I promised to find for another member, or to take to my own doctor.

If it’s pertinent, I’ll update my own topic. With RLS being such a misunderstood condition (despite our best efforts you still have to admit its still very misunderstood!) I have found it extremely helpful to “talk” about what I am going through with my RLS. Sometimes I’ve posted every day for a week. Other times it’ll be a month or more. I include information about other ailments or environmental conditions that affect the management of my RLS and I know that other members of the group have found the information useful when they’re searching for their own answers.

Ok, starting from the top:

Non-Pharmaceutical Therapies

Great topic for the board. There’s no end to the list of remedial, herbal, spiritual, etc, remedies that members of our “family” use and recommend or have tried and given their honest opinions. There is a treasure trove of information in this thread for those in our family who suffer mild or moderate RLS

It’s also been the only place I’ve found where happy grass has been discussed in a non-judgmental way; which I know has been very comforting to those who have tentatively brought up the topic and found that they haven’t been beaten off with a stick, instead been welcomed by others who’ve opted to try this method and everyone has been able to compare and discuss without being frowned upon.

I have spent hours trawling through the information in this thread. It’s fascinating to find out about the different things that can be and have been tried.

New To RLS???

The “stickies” are the best part of this thread. Overall, this thread is a one-stop-shop for all the people who stumble across us or are told where to find us, and need some quick info, or just a place to start.

As the newbies become regular posters, I’ve noticed that some decide to keep a “diary”, as a lot of other members have, which they can then have moved into the “General Topics RLS” topic. This thread is imperative to the board. I know we have over 1000 members, but not all of them have posted.

I am making an educated guess here and saying that due to the wealth of information in this thread alone; coupled with the other threads; a lot of our members are obviously happy enough to visit us at their leisure to find the information they need and they also know that we are always “open for business” should they ever need to ask a question or seek advice.

Special Populations

The title pretty much speaks for itself. I have a quick look in there from time to time, to see what’s being discussed, but since I don’t really fit into any of the categories it’s not all that useful for me.

However, should I ever manage to become pregnant then I am sure I will be reading every single topic in this thread; especially since it wont just be RLS that my docs will be worried about, but my chronic thyroid condition as well. So, yep, this is a most useful thread.

Pharmaceutical Therapy Discussions

Again … the title speaks for itself. The stickies are well managed, the discussions are very informative and very rarely go off-topic, and I’ve lost count of how many different combinations of drugs people can be on for this blessed affliction.

I have found myself wandering through the pages looking for information on various medications and been more than happy with the results. Even if a topic is more than six months old, if someone comes along and has a new question relating to the topic, the discussion is reopened. I like that a lot.

General Topics RLS

This thread kinda overlaps the “New To RLS???” thread; but in a good way. For me … it’s where I’m able to really “talk” about how I’m coping with such a severe hereditary form of RLS. I’ve had newbies tell me that they’ve found good information in amongst my long ramblings that they can take to their doc as examples. I’ve had regulars wonder how the heck I’ve managed to stay on the right side of the grass with some of the things I’ve tried and tested … I’m not going to touch the DETOX subject lol.

General Topics Non-RLS

It should be a kind of virtual “Family Room” ... General Gossip; General Info; Who's seen the latest blockbuster movie and what they thought; Has anyone read this book or can someone recommend a good movie or book; What's going on in general family life (e.g. a daughter gaining her Veterinarian Degree) ... That's what this thread should be all about ... us being a Family ... and having a thread that is "off topic" so to speak, but allows us to get to know each other that little bit more each time we visit.

Here's a few topics i've used this thread for:
Sharing funny stories and jokes; Having somewhere to go when a close personal family friend passed away from one of the most horrid diseases MSA (Multiple System Atrophy) and being able to come and have a "cry" knowing that the care and attention in this family is 24/7; Venting … about anything and everything … from a busted hand to useless neighbours who accuse you of building a fence that you know nothing about, on their land; Venting … I know a lot of members have found this thread to be the perfect place to come and scream or cry about something that is not going right in their life, knowing that they are among friends who WON’T tell them to “put up and shut up”; Putting up lists of favourite books and movies and seeing what other members like to read and watch; Having a general catch up with other members; despite this being a U.S. based site, and me living on the other side of the world, this is my only REAL lifeline to people I know who care about what RLS can do to your life.

If people wish to discuss politics, race and religion, by all means go ahead; I just don’t like seeing topics started with deliberate “bait” trying to entice people into a discussion that just turn nasty. I’m not talking about having a thick skin, thin skin, tough hide, hard hat or whatever … just remember that there are a lot of people who contribute to this board and if you’re going to be boorish, then you’re bound to rub someone up the wrong way somewhere along the line and pay the consequences; be it via the mods, or whatever.

Yes, I know the dynamics of this board have changed since Day 1. I’m not as daft as some people imply. However, I do take offense to people who deliberately try to stir up trouble, just because that’s their attitude in life and they believe everyone needs to hear about it. By all means say your piece; but keep in mind “if you dish it out … make sure you have the guts to cop it twice over in return.” Nuff said.

RLS and Relationships


A very important thread. I wish it had’ve been around before my marriage fell apart. Maybe my ex-hubby would’ve been able to find the answers and assistance he so desperately needed to be able to cop with me and my brain.

I’ve tried to get Troy to post on here, but he’s a bit shy. One day …

I think the addition of this thread was a fantastic idea as it’s a great place for the partners of RLSer’s and even RLSer’s themselves to nut out problems with people they know and who they also know are supportive of them.

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

As I've already said, I'm an Aussie. I call a spade a spade. If I insult you, upset you, or unintentionally bait you, 99% of the time I don't mean it and have just been typing out what's whirling around in my brain, so for gawd's sakes, get into PM or email me and sort it out. I am human after all; and last I checked, humans were allowed to make mistakes.

I'm all for free speech, but I was brought up to know that if you DONT have something NICE or RELEVANT or NON-CONFRONTATIONAL to say ... KEEP YOUR MOUTH SHUT (or sit on your hands until you DO think of something nice, relevant or non-confrontational).

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

That's my take on what this precious discussion board means to me. I hope you find the information useful.
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!!!

Sojourner
Posts: 1657
Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Post by Sojourner »

S75, Thank you for the obviously thoughtful, comprehensive and on-topic post.

M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

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

Post by lyndarae »

I stand firm with Nadia 100%. I have always felt safe coming here and talking about my rls and my life (painting) and trying to be a good person. I have a problem with people attacking other people in here because this is my family and when one of you get hurt I get hurt and my "mother bear" comes out to protect. I am an old bird, and that is the way I work. When I read a post I am not happy with I try to stay out of it and do,(MOST OF THE TIME) I have my life story in here so those of you who know me or want to know me know who and what I am. I dont feel this is the place to rip into a persons character. Most of us in here are already in alot of pain and that is one of the reasons we are so supportive of each other, lots of (((((((((((((HUGS(((((((((((((( are what I like to give and get. This board to me has been my home for 4 years now, I respect it and cherish it and all of you who suffer with rls, we do it here together sometimes with tears and lots of times with laughter. It has always worked well and I hope it will continue on, those of you that are here just for information are welcome always, those of you who do not want to make friends here dont need to everyone is a part of this board in their own way. I have always thought this board was a laided back work together place, if it is too sweet or tame for some tastes there are plenty of places that love to do battle. Together we stand devided we fall. It would be wonderful if we could all just play nice and enjoy each others thoughts without a need to belittle them wahtever they are. For me the bottom line is this board is made up of real people with positive attitudes and kindness in their hearts and passion for dealing with rls................ once that goes, the foundation of the board for me goes, and then I go. I have enough pain outside of here to want to come here for more. We have already lost too many good people, lets keep the hierarchy out, we are all in this rls boat together we need to row it not debate it so long that it sinks. These are my feelings you can take them or leave them, I just ask that you hear them. Thankyou~~~~~~~~~Lyndarae
You cant be brave if you have only had wonderful things happen to you

Sojourner
Posts: 1657
Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Post by Sojourner »

Thanks again for another on topic post.

M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

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

Post by Rubyslipper »

I really can't add anything to the above posts. Both were filled with the same things I would say. It is a wonderful board filled with wonderful people. It has been and continues to be my lifeline, my anchor and my support. No matter what I need, I can find it here.

I'm not on a lot and try to catch up when possible. The world is full of different people with different ideas and thoughts. As long as we can respect each other and agree to disagree at times (and still be cordial to each other if not friends) then this board should continue to grow. Bickering only frightens newbies and others off. Friendly picking on each other is fine with me, friends can do that.

Where else can I go to find people who know exactly what I am going through, who love me even when I rant and rave, who are always there for me? Would I change anything about this board? Not really. Am I open to change? Yes, there are always ways to improve.

Thank you for opening this thread again. Let's keep it on track ( promise to behave this time :oops: )
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

Hos
Voice Chat Host
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Location: Alvarado, TX
Contact:

Post by Hos »

Where else can I go to find people who know exactly what I am going through, who love me even when I rant and rave, who are always there for me? Would I change anything about this board? Not really. Am I open to change? Yes, there are always ways to improve.


Well put and Amen. We are here for each other, even after a tiff, like a family. :) Some key words come to mind that this board is as well as strives to be:
Love
Understanding
Compassion
Humor
Education

LUCHE? Making me hungry... :D

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

Post by Rubyslipper »

Add Never-ending (at least I hope so!) LUNCHE..great idea! Anyone up for pizza today?
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

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

Post by lyndarae »

OHHHHHHHHH ME ME ME ME I am always up for pizza!!!! Ruby my dear, your not only my family BUT you are also my hero!!!!! You see I know about the time and great things you do for this board and all of us, you can run but you can not hide. I thankyou from the bottom of my heart for all you do and what you are. And every time I see your ruby red slippers it reminds me THERES NO PLACE LIKE HOME!!!! You Rock, girlfriend~~~~~Lyndarae
You cant be brave if you have only had wonderful things happen to you

Sojourner
Posts: 1657
Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Post by Sojourner »

Thanks for staying close to the vest again.

M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

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

Post by jan3213 »

I haven't posted a response to any of the posts, but I will to this one. Ruby, you said it so well, my friend. I came to this board one night when I was desperate for an answer, like (I'm sure) everyone who has come here. And, I have continued, over the years, to come here for one reason or another--either to help myself or to offer a suggestion or an idea that might have worked for me.

This board has been a life line to many, many people--a shining light when nights are long and hope is something lost. I don't know where I'd be right now if it wasn't for the wonderful support I've received. And, I hope it continues to help anyone who needs it--just as it did me and so many others.

Nothing is perfect--no one is perfect. We all are different--in our thoughts, actions and experiences. But, we all have one thing in common--we all have RLS. And, for that reason, I hope this board is here 50 years from now. Who knows? My own children may need it as much as I do--not to mention the many people who will come after all of us.

I hope everyone has a great day.

Jan
No one is alone who had friends.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Post by becat »

I would agree that this board is simply a life of it's own, at least in my world.

I wanted to stand with Nadia and say great post.

I wanted to stand with Jan and Lyndarae and say, it was Rubyslippers that held me together and made me see that RLS did NOT define me.

Hero, yes, she is. For every post she writes here, she does 5 more things without anyone's knowledge that uplift or support our whole community....and does so with selflessness and hard work.

I have great pride in this board, in these people, warts and all. But my Ruby, she is a giver of wings. My angel, and the one that gave me my own wings.

This will pass if we all get on with it and bury those post that will mean we have changed some, but not the core. The core is here and will stay here and continue the fight for all here .......and yes my Jan, for those to come.

Here's to 50 more yrs of success.

I love ya'll openly and honestly, and proudly say family about many of you. My blessing is to have found this group and I hope that is just that for others.

Let's get on with better things.

Hugs and a moon full of love,
Lynne

ctravel12
Posts: 2125
Joined: Mon Jul 03, 2006 2:02 am
Location: Lake Havasu City, Arizona
Contact:

Post by ctravel12 »

Thank you for doing this thread Mark. I found this board by pure accident as I was having 24/7 painful rls and just wanted someone who has rls to talk to and here I found this wonderful board.

It has been a life saver for me and without it I do not know what I would of done. The wonderful support was awesome. I was so forunate that I could find people who were so compassionate and also educated on this horrible disorder/disease.

I also had some wonderful support when I had some medical problems and also when my SIL lost her daughter over a year ago. I thank everyone for this from the bottom of my heart.

Lynne you were talking about Rubyslipper being your angel and gave you your own wings. Well that is what I think about you as you are my angel and given me my own wings.

Jan you were there for me when I was at my worst and stood by me and I remember you once said that crying cleanses the soul. How true that was.

Ruby you are such a wonderful person and so glad that I can call you my friend. LIke you said in your post "where else can I can go to find people who know exactly what I am going through, who love me even when I rant and rave, who are always there for me.

Hos I have read alot of your posts and you always had something nice to say to someone and that means alot to us especially when our rls goes bonkers.

Nadia all I can say is that your post is wonderful and can sum it up by saying "thank you".

Lyndarae you are so compassionate and really got to know you on the chat line and you are one fine lady.

I want to thank everyone for their support and how we learn from each other.
Charlene
Taking one day at a time

cmoore1958
Posts: 232
Joined: Wed Jan 23, 2008 11:47 pm
Location: Texas

Post by cmoore1958 »

I've only been on the board for 1 month and 5 days -- it seems a lot longer if you take into account the closeness I have found with so many new friends and family here.

Moderators -- I know y'all take a lot of slack sometimes for doing a thankless job, but I want to thank you personally for all you do. You are always around to jump in and post when it's needed and seem to always know what to say. I admire you for your dedication and knowledge and again, thank you for sharing so much of yourselves with us.

Susan -- You were one of the first people on the board to welcome me. You read my first post (which I was really scared to do) and PM'd me to give me encouragement along with the welcome. You will always be a special person to me for that initial contact. It, and you, mean a lot to me.

Moonlight -- what can I say, ML, I remember when I first started reading posts on this site and ran across some of yours. You are one of the most sincere people I have ever run across. You speak your words with feeling and it is a very positive experience for all of us who read them. Once I posted you PM'd me to welcome me to the board. I felt like I had been welcomed by royalty. LOL

Jan -- you sent me a note of encouragement and welcome at a time when I really needed. You have a special place in my heart as you are such an inspiiration to those of us who know you. You add an element to this board that is like no other.

Ruby -- my mirror medical image. You are one amazing woman. I admire your stamina and your honesty. I sent you a PM out of the blue and you responded like we were long lost friends. I know that I have a dear sister in you. The board would not be the same without your spunk and insight.

Becat -- my Texas buddy! I feel like you are my own little cheerleader. I love hearing from you because I know that I will feel uplifted when I'm done reading what you have to say. You shoot straight from the hip, but do it with a style all your own. You are a gem and a good friend for life. I thank you deeply for being who you are to me and others on the board.

Sardsy -- you were an immediate friend to me when I didn't have any friends on the board yet. You always check in to let me know how you are and if you're going to be away so I won't worry. You do this for others as well. Your consideration for other and genuine caring makes you a valuable asset to the board as well.

Lora -- my sidekick of late. You make me feel like me. I can talk to you in a way that warms my heart. You can give advice without judging, and with a prayer. I thank God for putting you in my life girlfriend. I'm glad to see you posting now, you have so much to offer the board, and it you. Keep it up.

Char -- I told you once that you remind me of my mom -- that is the highest compliment I can give you. My mom is my best friend in life and you are the best friend/mom in the life of the board. You took me under your wing and sheltered me while I learned the ropes. You filled in the gaps of knowledge where I needed it. You provided a pathway to other friends I would come to cherish. Your role on this board is very clear to me -- mom. And I can't think of anyone better suited for that role.

Okay . . . enough of the tributes. :) The board is a very sacred place for me to come at any time, from any place, and in any way I can get here. When I'm happy, I come to share. When I am sad, I come to be brought back up. When I am in need, the board supplies. When I hurt, the board aids in healing. When I thirst for knowledge, the board educates. When I need a good laugh, the board is humorous. When I need a friend, the board provides an abundance never outdone in my lifetime.

I find that this board is such a part of who I am it's unreal. I look forward to reading new posts. Also, going back over old posts is fun at times. I hope nothing ever happens to destroy the relationship this board has with everyone here and to come.

Thank you all for your dedication and commitment to being yourselves and loving unconditionally whomever joins the family.

Cyndi
Even when we are by ourselves, we are never truly alone.

My motto: It's MY pitty-party and I'll vent if I want to.

cmoore1958
Posts: 232
Joined: Wed Jan 23, 2008 11:47 pm
Location: Texas

Post by cmoore1958 »

I forgot to mention the chat room . . . although not widely used by everyone, this facet of the board is a valuable tool to "talking" with newbies and helping them in real time.

Cyndi
Even when we are by ourselves, we are never truly alone.

My motto: It's MY pitty-party and I'll vent if I want to.

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