Jan, your posts always showed your heart and I always enjoyed getting replies and messages from you.
I know, I for one am terrible about greeting new people (or NOT greeting them) and being supportive. Maybe it's my gender, I'm going to use that as an excuse anyway. Upon reading all of your eloquent supportive messages, speaking of you who are so gifted at that, somehow I think the job has already been done. And then I ask myself, should I reply...again..."I don't know what to say except I wish you the best."?
Crappy excuse (the gender thing again) and here's to trying harder in the future. There are some who I wish I could get "closer" to and haven't really taken the initiative to do so and some that I've been lazy about keeping in contact with as life and family and work and projects and etc. go on, but I appreciate everyone here.
I think this group is important. For me, just remembering the first time I found this forum, and knowing there was even a NAME for this condition and that everyone felt the same frustration, and the same pain...was a huge weight lifted off of my soulders. And to me, there actually does seem to kind of be something for everyone here.
Randy
MODERATOR RESIGNATION
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Walking After Midnight
- Posts: 649
- Joined: Sun Aug 21, 2005 5:23 am
- Location: Portage, Indiana
- Contact:
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cornelia
We all have our own opinion on this heated discussion. I use the word discussion deliberately because not only is this board for support but also for discussion, as it says right at the top of this page.
As I said before: when someone posts a message he/she can be criticized, nothing wrong with that. We may not like it always, but criticism can make us realise that maybe we have not always done the right thing, taken the right approach and so on. A grown-up person knows how to take a positive lesson from it and put the negative aside.
As for me: I have said what I wanted to say. I will now keep my mouth shut.
Corrie
As I said before: when someone posts a message he/she can be criticized, nothing wrong with that. We may not like it always, but criticism can make us realise that maybe we have not always done the right thing, taken the right approach and so on. A grown-up person knows how to take a positive lesson from it and put the negative aside.
As for me: I have said what I wanted to say. I will now keep my mouth shut.
Corrie
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SquirmingSusan
- Posts: 3028
- Joined: Sun Nov 12, 2006 4:08 am
- Location: Minnesota
- Contact:
Gee, I didn't even realize that it was getting heated! I had to go back and read what I've missed.
I've only posted my own feelings and observations. My hope is that people will be more aware of ways that can make people feel left out, and can pay a bit more attention to what they're doing. I'm not upset about anything here, and I don't intend to change the way I'm participating in this forum. There's work to do here.
I've only posted my own feelings and observations. My hope is that people will be more aware of ways that can make people feel left out, and can pay a bit more attention to what they're doing. I'm not upset about anything here, and I don't intend to change the way I'm participating in this forum. There's work to do here.
Susan
I stayed away for a couple days deliberately but I'll just say this much..
Everyone has their own ideas about the forum, I guess that has been echoed on many ocassions. I think that this is a very helpful place, all in all. I understand some folks don't like some of the more popular topics such as all the talks about medications and what not, but it should also be taken into consideration that support means different things to different people.
I find support to be more than just patting your friends on the back and saying it will be OK, and "being there" for someone.
No, we are not doctors, but one thing we are is pretty educated about our condition, as well as various medications used to treat it. I don't think anyone here has ever come across as trying to "play doctor", personally.
When I go somewhere for support, like many others I want information just as much as understanding and sympathy from others. I think a lot of the people who come here lately are also at that stage of their RLS. They've even been to one or more doctors, have received inadequate care, been shunned by their family or others, and just want to know how to make the suffering stop.
I just don't feel it is unreasonable to ask others what medications they take, how much works for them, what drugs to stay away from, and what might be best to ask their doctor for if they are not responding to the standard Requip/Mirapex bit that they are likely to get from a doctor first hand.
Is it really any different than asking about some product your friend got from the store, or wherever, over a cup of morning coffee? Most of us always tell people to see a doctor and to take helpful literature. No matter what we tell other people who come here, they usually HAVE to see a licensed physician and get diagnosed to get the majority of the drugs we talk about, and we always encourage them to do so.
There is no harm in sharing knowledge about these topics, and to keep it to ourselves would be a shame; What that person does with the knowledge is out of our hands, regardless. There is a certain level of personal responsibility in play I guess.
I don't think what we do with information about drugs is any more wrong than what Dr. B does. There are plenty of physicians out there who would jump down his throat for providing the support he does "over the Internet" just as much as some feel it is wrong for us to share such info. His having a license doesn't make it any more reliable info than if it came from us - a real doctor still had to be convinced to prescribe the medicine and instruct the patient on how to use it.
Well, that's my two cents. I respect that some people feel the way the original poster does, even if I don't totally agree with the sentiment.
Everyone has their own ideas about the forum, I guess that has been echoed on many ocassions. I think that this is a very helpful place, all in all. I understand some folks don't like some of the more popular topics such as all the talks about medications and what not, but it should also be taken into consideration that support means different things to different people.
I find support to be more than just patting your friends on the back and saying it will be OK, and "being there" for someone.
No, we are not doctors, but one thing we are is pretty educated about our condition, as well as various medications used to treat it. I don't think anyone here has ever come across as trying to "play doctor", personally.
When I go somewhere for support, like many others I want information just as much as understanding and sympathy from others. I think a lot of the people who come here lately are also at that stage of their RLS. They've even been to one or more doctors, have received inadequate care, been shunned by their family or others, and just want to know how to make the suffering stop.
I just don't feel it is unreasonable to ask others what medications they take, how much works for them, what drugs to stay away from, and what might be best to ask their doctor for if they are not responding to the standard Requip/Mirapex bit that they are likely to get from a doctor first hand.
Is it really any different than asking about some product your friend got from the store, or wherever, over a cup of morning coffee? Most of us always tell people to see a doctor and to take helpful literature. No matter what we tell other people who come here, they usually HAVE to see a licensed physician and get diagnosed to get the majority of the drugs we talk about, and we always encourage them to do so.
There is no harm in sharing knowledge about these topics, and to keep it to ourselves would be a shame; What that person does with the knowledge is out of our hands, regardless. There is a certain level of personal responsibility in play I guess.
I don't think what we do with information about drugs is any more wrong than what Dr. B does. There are plenty of physicians out there who would jump down his throat for providing the support he does "over the Internet" just as much as some feel it is wrong for us to share such info. His having a license doesn't make it any more reliable info than if it came from us - a real doctor still had to be convinced to prescribe the medicine and instruct the patient on how to use it.
Well, that's my two cents. I respect that some people feel the way the original poster does, even if I don't totally agree with the sentiment.
Re: MODERATOR RESIGNATION
jan3213 wrote:A few of the older members who I have become close to are Rubyslipper, Penguin, and Lyndarae. Of course, there’s JumpyOwl, who will forever have a place in my heart. Nadia was one of the first people to greet me when I joined, as well.
My dearest Jan
You have become one of my dearest friends from afar and every day I vow that I WILL get to the U.S. to visit not only yourself, but Becat, Rubyslipper, Lyndarae, Anne and the person I miss the most ... our beloved Jumpyowl. My next jaunt would be to the Netherlands to give Cornelia a big hug.
Like you Jan, I used to spend hours on this site, welcoming people, letting them know they werent alone and giving them a helping hand in finding information to take to their doctors. It was Rubyslipper & I who started one of the "sticky's" regarding where to find general RLS info.
Despite being the first person to join this forum (check if you dont believe me!) I too have become just a "lurker". This group used to be all about support for each other and making not only the medico's but the general public AWARE that this RLS "thing" is a very real torturous syndrome ... but that direction has indeed changed.
I love the way you welcome people with your warm comforting words and it has been you who has been one of my "rocks" right from the day we met.
You've seen me OD on drugs thanks to a stupid neuro; you've seen my marriage break down;
my long battle with my now ex husband over property (calling me a gold-digger & a profiteer by him was not one of his more defining moments!);
you've comforted me when three very close friends of my family all within months of each other;
you've seen me hit bottom and bounce back;
get hit with hashimoto's;
and you've seen me fall in love again with a wonderful man and three beautiful little girls. Jan you are a wonderful friend and I am forever in your debt for being there when I needed an ear.
The best thing about my friends in here is that ALL OF YOU supported me last year (2006) when during my divorce debacle, i did a complete DETOX. Noone called me a d***head, or thought i was crazy, and despite the fact that it was one of the more harrowing times of my life, my journey inspired a lot of people who read my posts during that time.
I was even called a hero ... but i was just doin wat i thought was right and even discussed my idea with several members of the forum. Jan ... you were with me the whole way, giving encouragement.
I love you for who you are and what you stand for. Big ((((((((((((huggles))))))))))) to not only you, but your loving hubby, your daughters, and your son. They are blessed having you in their life and I thank them for sharing you with us.
Love you heaps Jan
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!!!
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!!!
becat wrote:To address the "love fest" issue. This is a simple fact. In the spring of 2004, this very young board had a group of people that now are known as Old Timers. Well that group was just a special mix of people that, unless you go back from day one and read the post, you'd likely not understand what a bond that we created here.
We got active in our own challenge to the Foundation, it's researchers, and the docs we seek out to help us. We realized that together we made a fist, not a thousand hand reaching for help. That putting our voices together make a shout louder than a cry for help from one.
We had a direction as a group for change for our greater good. That is what bonded that group of oldtimers.
Jumpyowl put hours and hours to answer (with all due and creditaled authority) answering medical and pharmacutical questions. He rewrote the Algorithum in laymen's terms so any of us could edcuate ourselves easily. He also started his own research project that (I believe) changed some of the experts minds about what or how they were doing their own work. We all helped him. Nadia sent out a message worldwide anywhere she could to get people to take the survey. Jan and I spent one weekend emailing every memeber of the board to take the survey.
I st that time asked everyone for Quality of Life statements and that went out of the wire as well.
We were going to make ourselves heard.
Now, Quality of Life is an issue that is talked about, served, and acted upon, because I had 13 people that first year willing to share their deep dark, lonely secrets about how we really live.
It's not that we were special we had a coomon goal, spent relentless hours together here, some of us met in the little chat room they offered several nights a week to laugh, talk about RLS and our lives.
We were all working for the greater good of this community. Rubyslippers became a group leader, and I thank her for leading many of us that way.
Ann join in late OCT. or Early Nov and like the rest of us jumped right in and started helping.
This discussion board was opened on 24th Feb 2004 ... I joined on 18th March 2004. By 31st Dec 2004, i was joined by cornelia, rubyslipper, jumpyowl, becat, jan, sole, lyndarae, sara, anne ... and our member total was a "huge" 179.
At that time, RLS was NOT known widely. For gawds sakes, it took my 1st Neuro a week to diagnose me ... then i spent hundred of HOURS on the internet trawling through page after page after page for information on a syndrome that even my GateKeeper had never even heard of!
Today ... just over 3 and a 1/2 years later ... we have amassed a total of 1601 members ... with more to come.
I thank, from the bottom of my heart, people like mark, anne, charlene, zach and everyone else who has taken up the role of "welcomer" or "info provider" today. I can asure you that if I had the time on my hands that I did when I first joined, I would be racking up posts, responding to every post that i could; which is what i used to do. Unfortunately, my current circumstances dont allow it but i still contribute when and where i can.
Lovefest??? WTF??? ... or ... What the??? For those offended I apologise if I didn't welcome you on your first day/week in here. There have never been any leaders or groups who "lead" or "head" this discussion group. For every one who has come to this forum, i can pretty much guarantee that somewhere in the first few responses they recieved, someone posted "welcome to the FAMILY".
Yes, those of us who have seen this board grow from nothing to a hugely successful forum, have a special bond and becat summed it up perfectly in the parts of her post i quoted above. Yet, above all, we ALL still consider this place a part of our "family".
It was tough in that first 12-18 months!!! We were few and the medical community was many ... as for the public ... yeah ... well ... you do the math. We decided to make our voices heard ... we wanted to shout from the top of every mountain and let everyone know that we existed, that RLS existed and MOST IMPORTANTLY we wanted a BETTER QUALITY OF LIFE!
I still see this forum as my "family". The one place i can come when my body has rejeceted my meds ... AGAIN; a place where i can cry when i cant see my way out of the depression hole; a place where i can share bizarre ideas, like ... Detox!; a place where i can share the highs and lows of my life ... even non RLS related topics. My "family" has never judged me. I've never been asked "how come you dont post so often any more" it's just been accepted that my life has taken a turn and i dont have the same amount of time.
In summary, I echo Mark's post what "I" would like this "place" to be ...
Mark wrote:A place to learn and a place to teach, a place to talk and a place to listen, a place to take and a place to give, a place to join in and a place to just watch, a place to support and a place to be supported, a place to encourage and a place to be encouraged, a place to heal and a place to be healed, a place to be angry and a place to find peace, a place to forgive and a place to be forgiven, a place to laugh and a place to cry, a place to express and a place to reconsider, a place to respect and a place to be respected, a place to....
Join in if you like.
M.
Love, hugs, positive thougths, sweet shining moonbeams to all ...
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!!!
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!!!
Mark wrote:hasimoto's ????
M.
Hey Mark,
Hashimoto's is an autoimmune disease which attacks the thyroid gland. It is often linked to hypothyroidism. It is usually hereditary, but i'm the lucky first person in my family, EVER, to get it ... go figure
Have got a link to an info page from the Mayo Clinc ... here
It means a lifetime of hormone drugs and visits to the vampire clinic every few months to keep a check on everything.
Hope that sheds some light on the subject for you.
Love n hugs
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!!!
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!!!
NADIA....................OMG it's good to see you(hear you) whatever, dam girl I havent heard anybody use the gatekeeper word for such a long time it made me cry, thankyou so much for jumping in here, I felt like I was trying to defend myself about my love for everyone, how I have missed you. Dam there I go with the tears, some people are just better at typing the right words, but you bring back so many memories, remember the HONOR ROLL???? Jumpyowl put me on there and I was so proud, but hey we had to earn it right!! Dang girl I hope you are doing well, as I am sure you know we are all hanging in here, helping each other out the best we can, thanks so much for the support and love, you are dearly missed and never far from our hearts GOD BLESS hon~~~~~~~Lyndarae
Everyone thank you for your warm words for Jan and we will sorely miss her work as a Mod....but will welcome her here as the loving part of the family she has always been.............and will stay!
I think it's time for this post to go to bed. We've all found a direction of change in the air and thus, so it will happen.
Our greater goal for us, here, outside with the docs, with a world that does not understand us. We still have so much work to be done and I am certain that This Family, here, right now, can bring forth that change.
Bless us all that we see change every year in a good direction for us all.
Love, hugs, and all the hope in the world.
Always, I'd row for you when you cannot row for yourself. As I know you would for me.
Lynne
I think it's time for this post to go to bed. We've all found a direction of change in the air and thus, so it will happen.
Our greater goal for us, here, outside with the docs, with a world that does not understand us. We still have so much work to be done and I am certain that This Family, here, right now, can bring forth that change.
Bless us all that we see change every year in a good direction for us all.
Love, hugs, and all the hope in the world.
Always, I'd row for you when you cannot row for yourself. As I know you would for me.
Lynne