SUGGESTION FOR SJOGRENS WORLD STAFF

[ohiolady]

I'm wondering if there is any possibility of going back to the topic oriented board.  When I first found this board, subjects were divided into categories such as EYES AND MOUTH, COGNITIVE PROBLEMS, CNS ISSUES, GI ISSUES ect.  I believe the format changed so the moderators could monitor more easily but I've noticed less and less posting from the moderators.  I really appreciated this format as I come to the boards to help others and to learn. 

Can you please consider this possibility?

Thanks,

Anna

[Nathan]

I agree. There's enough activity on the forums, that a thread you're looking at can quickly zoom to the next page.
It's also nice to see areas that have a greater focus. There seem to be many groups of conversations happening all the time, and it would be great to see them seperated out again.
Something else I'm interested in, is maybe an area for those of us who are "younger" to talk easier to each other. I find we often have much different experiences, worries and issues than the rest of the fine people here on these forums.

Thanks,
Nathan

[Lily]

Anna,

Sounds great if the moderators can "work" the Board that way.  Make sense, though, considering that not everybody here has the same Sjogren's issues.  

Topic-oriented works for this member, and that would include straight-up medical, suggestions for product, foods, supplements, etc. to help with various manifestations of Sjogren's.

Chat Room works for other stuff.

Take care and thanks for writing about this,

Lily

[anita]

Excellent idea, Anna.

I must have come to the forum after the change to the current format.  I agree with Nathan that topics can quickly disappear to the next page and they would be easier to find if within defined categories.

[irish]

I will address this before the moderators even get here.

I was a moderator on this board for about 1 1/2 years and I really liked doing it. It became almost more than I could take though. I spent a minimum of 3 hours every day on the site. At that time there were some of us that gave a lot of blood sweat and tears over the postings.

Actually, I had to give it up because I just could not take the "pressure of having to perform" when I felt so lousy and was having more health problems. There have been a lot of people who have been moderators on this site who just totally crashed and burned out. It is not for the faint of heart.

The responsibility of being here hours everyday and then having staff meetings and doing the chat rooms just wears a person out. It is a huge responsibility. It did work well to have it in the old format, but it was a whole lot more work for the moderators at that time. If I remember correctly it had to be changed to make it easier because everyone was quitting due to health issues. We are all sick and the longer we are on this site the sicker many of us become.

The job of being the administrator of a web site is a daunting one and there are many things that need to be addressed behind the scene that others aren't aware of. It is very time consuming and stressful for someone with compromised health issues. It was nice the old way, but I can't imagine that there are enough moderators or hours in the day to keep up with the volume of threads and posts without starting the same burnout and turnover problem again.

I'm sure you will hear from someone from the site and hear their story. Also, have any of you found any friends who are sjoggies??? I have a friend from high school who is also a nurse who has sjogrens. She and I can call and talk with each other. There is always one or the other of us in the hospital or having issues. We just learn to laugh at ourselves and keep on plugging along.

We don't have a Sjogrens support group in this area but many other places have them. Maybe some of you could start one in your area. Check with Steve Taylor of one of his staff at Sjogrens Syndrome Foundation for some help. Irish

[Lily]

Agree that the moderators and staff have a monumental job.  And with so few of them have wondered how they get it done.

So as an alternative if Plan A doesn't happen, think Irish had a good suggestion, too, which was anybody who's interested to think about starting a support group wherever we live, if possible.

Another thought - of necessity because of an additional medical condition am a member of another forum.  It operates about 50-50 on the premise, I believe, that we're responsible for educating ourselves about our conditions which are all variants of the same problem.  But everybody is very helpful - if you've discovered something that's pertinent but don't quite understand it, or have been searching and just can't find something, there's usually another member who will assist.  That forum isn't into what I'd call all warm and fuzzy, but that's not the major purpose.

Take care,

Lily

[inga]

Great idea!  The reason I come on this forum is for topics.

[irish]

Basically, when I was a moderator I did a lot of research and teaching, etc. The problem is that it is so time consuming. We can all do research ourselves and if there is something that one doesn't understand then come to the forum and ask about it. There is a ton of information here just by virtue of everyone's experience being so different. Irish

[Linda196]

I want you all to know that the subject is "under advisement" and will be discussed at the next weekly staff meeting.

Thank you, Irish, for sharing your insights about moderating with our friends. You know we miss you on staff, but as always, health (or a Sjogren's semblance of it) must come first. Your posts are always so valuable, and especially so now that you have time to focus on the sharing side of the boards.

[gphx]

Here's a problem I see. Suppose someone has CNS issues. Neuro issues can cause dry eye/mouth, cognitive issues, and gi issues. They can be all connected. Should someone create four separate posts for each issue? Part of the problem for many is too many 'ologists' looking at only an aspect of their condition with no one to put it all together. Should we cut the body into pieces here too? To me that'd be a mistake and much would be lost.

What's good for the moderators is good for us also.

Finally, if one wishes to see only posts relevant to a particular issue as things are structured now, one need only use the search box to pull up an appropriate selection. Using the search box we have it both ways.

Personally to me one of the most valuable insights we can gain here is that symptoms are interrelated. I'd really hate to lose that as such cohesion is difficult to find anywhere else.

[anita]

I too (as I said before) would love the 'topics', but I understand what Irish said and I'm sure it's a lot of work. 

I wonder if it would make it easier to have each moderator cover just one or two topics vs. covering everything all the time.  Maybe others might be interested in helping (becoming part-time moderators). 

Again, it's a great idea and one that I would find most useful.

[ohiolady]

Thank you, Linda, for taking the suggestion under advisement.  I did enjoy the board much more when it was divided into topics.  I doubt that anyone appreciates the moderators more than I do and this, in no way, was a criticism of the moderators.  My thoughts were, that possibly it would not cause the moderators any more work than they currently have.

I hope it is okay that I expressed my preference of a topic oriented board.  It seems to have brought out some defensive dialogue and that was not my intent, at all.  Perhaps this is one of the reasons I prefer topics.

Thanks,

Anna

[Aquarius]

I really like the forum just the way it is now.   It is easy to read.  Since each main posting addresses a new theme it keeps things fresh and interesting to read down the line of today's new messages. 

I have been on another forum separated by topic and did not care for the separation.   And as someone else mentioned is it not always easy to categorize when many conditions are mentioned in a single post.

Thank you to the moderators for the generosity of time and energy spent on keeping this forum running. 
 

[Carolina]

Thanks to the staff and moderators.

Have a great Holiday, and best wishes for the New Year!

Kisses

Elaine

[Scottietottie]

Hi 

My understanding was that it was harder to administer the site when the forum board was split up and we used to have more administrators. We have fewer moderators too.

Splitting topics between moderators didn't work. That was tried before and I think everyone read everything anyway. Moderators do not always answer all posts but they do read them.

Take care - Scottie