View Full Version : All Lupus all the time--time for a change??

08-16-2005, 08:44 PM
I thought this forum was also for non-Lupus topics, but I don't see a single thread that's not about the condition.

Can we start a new forum that's specifically for us to get away from LUPUS?

I still have a mind that's interested in the world, and I'm sure all of you do,too However all-consuming we find being ill, one cure is to talk about things that are meaningflul to our lives--it's the most important way by which we remember that we're still human.

Any interest in such a forum, strictly non-disease related?

08-16-2005, 10:21 PM
I think that's an AWESOME idea!!! Not just a "this doesn't HAVE to be about Lupus" room, but a "This is NOT about Lupus" room... Jokes, politics, poems, world events, sports, music, just shooting the breeze... But, just a break from Lupus...

08-18-2005, 03:13 PM
Can we set up a new forum, or does the administrator have to do it? I'll make contact if someone will tell me how.


08-19-2005, 01:58 PM
Hi Awi and SoleSinger

I truly appreciate the suggestion about a thread or forum that does not deal with lupus. However, Let me give that some thought. I requested that the administrator set up this forum in memory of my daughter, primarily because when she was suffering from Lupus, we could find no one place on the web where we could ask questions, talk about her symptoms and treatments, get input from other Lupus sufferers, talk about medications and how they affected her, understand her tests and their results,get help with our emotional ups and downs with this disease, and just find a place that was supportive and informative. Hence, this forum!. Yes, all of the threads deal with Lupus because I want this to be a safe place where Lupies can come to get all of the above.
So, I have to give some thought to the prospect of moving away from that premise. This does not mean that I won't, it just means that I have to give it some thought. :lol:

Peace and Blessings

08-19-2005, 02:06 PM
Hi SaySusie!

I wasn't thinking of it in terms of moving AWAY from that premise... I was more or less thinking that it could add a place where we could get a break, too... But, if it doesn't feel like a good idea based on your vision for the site, I can totally understand that...

I am very sorry about your daughter...


08-19-2005, 05:08 PM
There's a wonderful idea down in the suggestion box - a forum for inspirations, for prayers, meditations, readings of strength.

That would be off the direct topic of lupus, but ON the overall toic of us sharing of ourselves to uplift, to gain strength and to move with grace and happiness through our lives.

Saysusie, I think such an addition could be a tribute to your daughter. You found strength and a phenomenal way to honor her, maybe that could be a way for all of us to share how we find strength and peace as well - and to continue that honoring?

08-20-2005, 12:41 PM
I have to say that I enjoy this site and come to it because it deals with lupus, and if I wanted a break from lupus, I would go to another site that wasn't created about lupus. I like the idea of inspirations, uplifting thoughts, poems, and prayers, but think that if someone had interest in that vein, they could just start a new topic in Laurie's Lounge. Why make the administrators, that I believe volunteer their time, create something that could already exist under the current situation.

Just start a new thread, is my opinion.........

08-20-2005, 02:57 PM
I'm just tired of being a sick person who can only come here to talk to other sick people about being sick. It feels like wallowing, which is why I've avoided such sites in the past. To have on one site the ability to check out messages, leave messages, read messages about symptoms, and THEN to go talk about a film or a book or creativity, politics, whatever, without having to find ten different sites, each one specific to the subject at hand, would be nice--it would feel more like a bunch of real people talking, and not just a "sick-people only" zone. And even if one went to a site to talk about some other subject, our time, energy level, etc., will come into any discussion about movies, and on another site we might feel unable to explain why we still haven't finished a book (for an example). I was just suggesting a slightly broadened focus, that's all. And I'm not trying to start trouble, but even one's original intention can evolve, without loss of that intention. I'm not sure that just because one has originated a thing, one then owns it, but perhaps I'm alone in that idea. I certainly don't think we'd be disrespectful to your daughter's memory if we talked about other things. Didn't she have interests besides her disease? I think we get too wrapped up in it--it's the biggest danger with chronic illness. If we lose the ability to talk about anything else, we become pretty dull, which in my book, is worse than being sick! I would like to keep my mind active, thinking about things besides how sick I am. I'd like to share my writing or painting or songs with others, especially those that have been inspired by what I'm going through and will be more appreciated than by someone who is an observer of illness, not a sufferer of it. And I'd so much like to see how others channel their pain and difficulties through art or writing.

Starting a new thread for each new subject could get combersome, though it's an idea.

But if no one else thinks that would be useful, then forget it. I'm new, and maybe it was innappropriate for me to make the suggestion. But this is exactly why I haven't come to a "support" site, since all I ever saw was sickness, sickness, sickness, as though we've been reduced to our diseases. I won't go down like that. I'm still a whole person with so much more to give and say and think and do....Since I've had Lupus, I've been to Ireland (twice, 4 mos. total), England, Switzerland, lived a month in Italy. I don't want to just talk about that, I want to talk about LIFE. We are still alive, aren't we? We visit other places than doctor's offices, don't we? I suppose I can try to find a more broad-minded site...it's my problem, maybe, though it seems that a few people were excited by the idea of talking about other things with these people, specifically. Not a group of strangers, but us, who know what we're dealing with when we paint a picture with hands that feel as though they're about to fall off--not your average painter's problem.

But maybe this just isn't where I should be.

08-21-2005, 02:07 PM
You're not alone, Awi. Take a look at Ronnie's post down in the suggestion box, you two are thinking along the same lines!

I still think an "inspirational" forum would be wonderful - stories of good days, information we glean from inspirational websites, whatever. Info on books we love - what ever!

08-22-2005, 03:26 AM
What level of interest is there in a non-illness Forum? If it's just me and SoleSinger and one or two others than I guess it's a non-starter, but if there is interest but people feel that they're stepping on SaySusie's toes by saying so, then we should talk about that. I've not found it yet, but I've been told there's a suggestion for it in the Suggestion Box. I guess it was ignored, but apparently it's there.

Again, I am only suggesting one place for a different discussion. If we were all in one room, we'd NEED to talk about other things, and since there are so many other forums specific to the areas of concern about Lupus and its relatives, how could ONE space where we talk about other things be a threat to the main mission? I think it would enhance it, not detract from it. Isn't one of our main fears the loss of the rest of our lives, the rest of our selves? Isn't feeding our need for our interests, passions, creativity, etc. a vital part of not going under? My email address is available, and it's been used to tell me that others are interested, but they don't want to post here, I guess because of the fear of offending Susie. I don't want to offend her, or anyone, but it worries me that people don't feel free to post their desire for another forum because of that possibility. Susie, if the discussion doesn't offend you, perhaps you could say so, then at least we'd know what the real level of interest is, and then whoever is in charge of the decision could make one based on accurate information. The fact that there have been (significantly) more than 100 views might be taken as an indication of more interest than is being expressed.

Part of my reason for not wanting to run all over the Net to find a book site, a movies site, an art site, etc., is that we all are already a community, so talking to one another seems the most pleasant thing--it's what we'd do if we were in the same room. Besides, who has the time or inclination to join a different group for every single interest we have? To have to jump from a book site to a gardening site to a movie site seems a bit absurd, and usually, in a discussion, one thing runs into another, so one would be constantly going "off-topic" I think they call it. And don't moderators monitor for that? This is only the second site I've been on, and the other one was very restrictive in that way.

And again, because we understand our limitations, we won't be always having to make excuses when everyone else is done with their short story (or whatever) and we're not. It would be fun, too, which I think is important. But if I'm talking into the wind, just tell me to shut up, and I will. I won't be offended.

08-22-2005, 06:19 AM
Hi All,

I thought I'd chime in here. Susie has already provided a forum that doesn't have to be about lupus - as Awi pointed out, every thread in that forum is lupus-related.

So while I believe I understand what Awi is saying - that the members of this site already have a connection and there is definitely life beyond Lupus that's worth talking about - I think I understand Susie's point as well - the forum headings created were pretty general, it's up to us what to make of them, and there is already a place for us to have these discussions.

So - in interests of Market Research - I'm going to go create some new topics on the board we already have and let's see what kind of responses there are.

08-22-2005, 07:39 AM
Hey Kat,

I didn't realize we could just do that, so great idea! It sounded like the very suggestion caused a problem because this forum is supposed to be dedicated to someone--I guess Susie's daughter is Lauri?--so when she said she didn't want us to talk here about anything but Lupus since her daughter hadn't been able to do so when alive, I thought that meant it was sort of "her" forum. I've been a little confused about what this particular forum is supposed to be about or for. As I said, I had originally thought, from it's description, that it was for non-Lupus chat, but then when I got here, that's all it was, and when I questioned it, Susie said she'd set it up specifically to honor her daughter's memory by making a place for us to talk about the disease, but that confused me since that's what all the other forums are for. And "Lauri's Lounge" sounds like a living room, not a doctor's waiting room, so it seemed even by its name to be a place to talk about the latest movie we saw, not migraines. But I don't know what's what, except that if you start a thread about something else, then people will either talk or they won't. "If you build it, they will come." Or not. (!)

I'll do the same about a subject I want to share, or talk about with others,, and we'll see what happens. I most want to talk about dealing with not just being ill, but life changes and fears, etc., through art, as I'm an artist. So when my hands stop throbbing (they hurt today) I will start a thread about that here in this forum, and we'll see....

Thanks for trying to come to an easy compromise. Clever girl.

08-23-2005, 08:05 AM
So, I've been reading the posts and the discussions and decided to chime in now!
Yes, the board was designed and developed for me by the administrator in order to have a place where people could come to ask questions about their Lupus, their medications, their symptoms, and their treatments. Also, for them to be able to get support, comfort, information and understanding.
Lauri's lounge started out as the place to go to chat about anything, not necessarily lupus related. The other forums were primarily about Lupus.
Lauri's lounge, however, also became a place where people wanted to talk about Lupus and, therefore, became the first stopping place for all lupus related topics.
As you can see, the threads that have been started by Katalanta and Awi have had response (including mine!) and I think that is wonderful. I enjoy the lightheartedness of being able to talk about something other than the daily heartaches of Lupus. So, those types of threads are very much welcome. I was concerned about straying too far from the purpose of the board, something that I don't want to happen.
This is a free forum supported by the administrator on my behalf in memory of my daughter. As such, it has a primary purpose which I explained earlier. It is my vision (as well as the administrator's vision) that we try to keep to that purpose as much as possible while, at the same time, being a safe place for all of us who deal with Lupus to meet and feel that we are not judged, not pitied, not misunderstood, but loved and supported.
If we can always do that, I am always open to new ideas!

Peace and Blessings to you all