Sjogrens World Forums

Sjogrens Topics => WELCOME! What you need to know as a member of this community => Topic started by: Scottietottie on October 26, 2010, 06:20:15 PM

Title: ALL MEMBERS PLEASE READ
Post by: Scottietottie on October 26, 2010, 06:20:15 PM
We wish for these forums to be a warm and welcoming experience; users helping users in a friendly helpful manner. Abuse will not be tolerated.

This quote is the first rule of conduct stated in the "Welcome and Rules" thread.  Sjogrensworld is a warm and welcoming site as long as our members refrain from using it inappropriately.  There is a wealth of information here, and members are typically quick and caring in responding  to posts.   Some of their responses will be helpful to you; in other cases, someone may misread your post or shed a different light on it.  Please be tolerant of each person's point of view.   If you ever feel uncomfortable about a post, either ignore it, or report it to a moderator.  Disrespectful exchanges accomplish nothing constructive; however, they create an unfriendly atmosphere that can deter visitors and members from partcipating in the forum.

This nonprofit site was pioneered and is administered by real Sjogren's sufferers.   The rest of us are honored to benefit medically and emotionally from using it, sometimes even as a lifeline.   Please do not abuse it.

Title: Re: ALL MEMBERS PLEASE READ
Post by: Kamie on October 26, 2010, 07:03:11 PM
Thank You Scottie That was Lovely
Kamie
Title: Re: ALL MEMBERS PLEASE READ
Post by: warmwaters on October 26, 2010, 07:50:56 PM
I've participated in many forums over the years. I've been the moderator on some. I'm happy to say that this is one of the most supportive sites I've been in. I'll also say that the ratio of helpful to unhelpful/mean posts is very good.  Lets keep it that way, and if someone experiences mean or painful feedback, please flag it, or report it to the moderators.

Thanks to everyone, I appreciate your help and kindness.
Title: Re: ALL MEMBERS PLEASE READ
Post by: sewandsew on October 26, 2010, 09:28:18 PM
This is a great forum and I have never felt anything but friendship and good will from posters.  People who attempt to cause a problem should just be ignored.  They will eventually go away.  Don't know what I would do without this support and the great information that is shared.  Thank you one and all.
Title: Re: ALL MEMBERS PLEASE READ
Post by: newhorizons on October 27, 2010, 05:06:14 AM
This SW Website makes my day brighter... knowing others are trodding the same path I am in life and truly understanding why I stumble so often along the way...

Thanks to all for picking me up, dusting me off, and offering words of encouragement to continue on my journey.
Words only begin to express how special each of you are to me!   :-*   LOL,  Joy
Title: Re: ALL MEMBERS PLEASE READ
Post by: Liz D. on October 27, 2010, 06:07:04 AM
I may not post everyday, but I read this forum everyday.

Honestly, I do not know what I would do without it!  The caring and support we get here is great!  The administrators, moderators, members are all phenomenal!!

Thanks to all!!

Liz D.
 
Title: Re: ALL MEMBERS PLEASE READ
Post by: ohiolady on October 27, 2010, 06:42:58 AM
Thanks, Scottie, for the reminder.  I appreciate the forum as so many do.  I personally come here to learn more about our disease and receive tips that have worked for others and also hope that I can offer up some information that may be of help to someone else.   I think that is why I liked it when the site was divided into topics ie, eyes, cognitive issues, gastrointestinal ect.

Anna
Title: Re: ALL MEMBERS PLEASE READ
Post by: Scottietottie on October 27, 2010, 06:56:58 AM
Hi  :)

I'd just like to say that the start of this thread was actually worded by one of our chat hosts - Cheryl (so take a bow Cheryl!)

I'm totally behind the sentiments but can't take kudos for it!!  :)

Take care - Scottie  :)
Title: Re: ALL MEMBERS PLEASE READ
Post by: Catilee2 on October 27, 2010, 01:42:20 PM
Scottie and Cheryl,

  Many Thanks too! to you and everyone else who work at keeping this site helpful and compassionate. You all were so supportive last year when I had an array of symptoms and the Drs. were scratching their heads. Though the problem was not SS related, many of it's symptoms are similar which at times can be confusing.
Reading that other experience similar symptoms and feelings keeps me from feeling like I belong on a "funny farm" not our little farm.

Catilee 2
Title: Re: ALL MEMBERS PLEASE READ
Post by: eyeamdry on October 27, 2010, 02:37:55 PM
To everyone "behind the scenes" and those in front center, I love this forum.  When I was dx with SJS, i was wandering in the woods, so to say.
Let's all do our part and keep it nice.  Lucy
Title: Re: ALL MEMBERS PLEASE READ
Post by: Autoimmunity on October 27, 2010, 03:30:25 PM
I'm still a newbie here, but I wanted to say this is one of the friendliest forums I have seen.  From my first post, I have gotten nothing but support, concern and wonderful advice and I have seen nothing less in all the posts I have read.  Thanks everyone~
Title: Re: ALL MEMBERS PLEASE READ
Post by: LeoLady on October 27, 2010, 05:17:13 PM
Autoimmunity:

DITTO !!

Hugs,

LeoLady
Title: Re: ALL MEMBERS PLEASE READ
Post by: BonusMom on October 27, 2010, 06:03:47 PM
I have loved this forum since day one and without it would have been lost.

But, I think it's the knowledge I garner from reading others' posts/responses than to the questions I post to the group that I've learned the most.
Title: Re: ALL MEMBERS PLEASE READ
Post by: Meld256 on October 28, 2010, 09:31:16 AM
Thank you, Scottie and Cheryl!

This site is warm and welcoming and I don't know what I would do without it.
Not a bad idea to remind everyone that we all have opinions but our exchanges should always be tolerant, cordial and understanding of the others' point of view.

Very nice  ;)
Melinda
Title: Re: ALL MEMBERS PLEASE READ
Post by: Katybarstool on October 28, 2010, 01:24:54 PM
This site has changed my life. I had been in the 'wilderness' for over a year after my diagnosis, and hadn't a clue where I could speak to people who were knowledgeable, and empathetic. The day I found this site was such a happy one.

I've made so many lovely friends here, and my life would be  much poorer without this Sjoggie family.

Group hugs everyone :)

Kathyx
Title: Re: ALL MEMBERS PLEASE READ
Post by: marilyn143 on November 02, 2010, 11:29:46 AM
This forum has been a lifesaver to me and is about the only place I have to go where others have an idea of what I experince daily.I feel like this is my safe place.Please lets always be a help to one another.Thank you to all the people that make this site possible :)
Title: Re: ALL MEMBERS PLEASE READ
Post by: evamarie on May 20, 2011, 06:54:37 PM
I agree. This forum has been a lifesaver to me.  Whenever I get any new symptoms, I first check it out here, before I call the Dr.  I don't know what I would do without this site. 
Title: Re: ALL MEMBERS PLEASE READ
Post by: sunnybunny on May 30, 2011, 12:10:54 AM
saved me before, and saving me again! I frequented the live chats years ago when things were calmer for the most part, medically and emotionally.
Now that everything is moving at  tornado speed for me...I knew exactly where to come  :-*
wish I hadn't been away for so long  :-\
so,  for the new-new people... I suggest sticking around.
Grow roots, this tree gets watered with alot of TLC  :-* ;D :)
Title: Re: ALL MEMBERS PLEASE READ
Post by: FLGrandma on July 28, 2011, 03:07:36 AM
I am a newbie to this forum and truthfully, a novice to forums and chats in general.  I have to admit I get confused on what is what.  I don't want to do anything wrong and have a question on how the personal messages differ from the "posts" on the forum?  I got a personal message in my personal email and replied..but not from my personal email, from the forum.  Was that correct?  I got a bit confused on how to proceed.  If somebody would give me the basics, I'd be ever so grateful.  I really think this website and these Forums are wonderful and a huge lifeline for sharing good advice.  Thanks.
Title: Re: ALL MEMBERS PLEASE READ
Post by: Linda196 on July 28, 2011, 03:44:53 AM
Welcome, FLGrandma, so far you've done exactly right!

The "personal' messages differ from the posts in the fact that they are, as stated, personal. What's said in a PM is strictly between you and the person you're messaging, while posts are open to the public (remember that guests, not just members, can read posts). For these reasons, we encourage you to keep personal information to a minimum , and kind of general, in open posts...for example, saying you live in such and such a state (Florida, right?) or large city is fine, but I'd avoid small town names, and never post a specific address or phone number.

The email notification you received is just that, a notification.......replying to it will not reach the person who sent you the PM. I'm glad you went to the forum to reply from there, so your communication did go to the person you intended it for.

Title: Re: ALL MEMBERS PLEASE READ
Post by: Katybarstool on July 28, 2011, 12:36:10 PM
Hi

Welcome FLGrandma, I'm glad you have joined us. You will get to know more people if you start your own thread. You can do this by going to Sjogren's World Forums, clicking on the Welcome members/social hour, and then to 'new topic'.

I hope you stay with us. BTW, I'm a grandma of 4 from West Yorkshire, UK.
Kathyx
Title: Re: ALL MEMBERS PLEASE READ
Post by: ingy54 on July 29, 2011, 08:49:01 AM
Best thing I have ever done since I found out about S.S was to find this website.The Italian one isn't nearly as friendly and useful as this one and it really has helped me so please let's just keep it going, ciao.... :)
Title: Re: ALL MEMBERS PLEASE READ
Post by: Patze on July 29, 2011, 08:01:57 PM
Hi FLGrandma,

Let me also welcome you to the SJS World and family!  Please look around the board by using the search engine located in the upper left hand side of this page.  If you can't find what you're looking for, don't be shy and ask away!

I'm glad that you've found us and I hope that you find this board as informative and friendly as I do.

Take care of yourself -

Patze
Title: Re: ALL MEMBERS PLEASE READ
Post by: gold55 on October 09, 2011, 10:28:24 AM
Finding this site was the most productive thing I've done since being diagnosed by a phone call from a my dr.'s front desk staff while I was at work!!!!!!!!!!!!   cold, non-compassionate....then telling me to see him in a month instead of 2 months!!!   My stomach dropped with the phone and I began crying.

I have utmost respect for this forum.....you have helped me to feel that someone cares and wants to help me go through this.....you want to share your knowledge! 

Thank you all for being here and when I needed you most.....I was feeling so lost and alone. 

sincerely, Jill
Title: Re: ALL MEMBERS PLEASE READ
Post by: Katybarstool on October 09, 2011, 12:40:01 PM
Jill

Welcome from me too. I understand your feelings about this forum so well. It has been a Godsend for me too. I've been here three years or so now, and hope you will stay with us too.

Kathyx