The site here does have a chat room, and either I am catching it at the wrong times, or it is not being used much.
So, I was hoping to get some feedback after running this past a lovely moderator -
Who would be interested in attending a regularly scheduled chat, I know posting with others here really helps. Topics could include how to cope with lupus, specific chats on anything that would help us to be as functional as possible, fun activities that don't worsen symptoms, tips from those who have more experience and wish to share, anything anyone might have an interest in.
I'm thinking more interaction would help us get to know each other, and to grow the wonderful spirit of helpful community already here. A social occasion without leaving the comfort of home. I would love it! And yes, I do realize sometimes we all have low energy, typos, and physical things that might hamper, but felt the post was worth a shot.
Please share your thoughts, pro or con. I'm thick skinned, the lab vampires have had at me so much. Fire away.
A doctor at ohsu put my sister on A.m.p floracel (a natural product)l. It put her into 100% remission. Although her symptoms do return if she discontinues the product but, as long as she takes it she is fine. Maybe it was just a fluke in her case but, I don’t know. If you want anymore info just let me know Jeff
A doctor at ohsu put my sister on A.m.p floracel (a natural product)l. It put her into 100% remission. Although her symptoms do return if she discontinues the product but, as long as she takes it she is fine. Maybe it was just a fluke in her case but, I don't know. If you want anymore info just let me know :) Jeff
Jeff, haven't heard of this. would you send me a pm with details, am all for anything natural that could help.
jeep2007 said:
A doctor at ohsu put my sister on A.m.p floracel (a natural product)l. It put her into 100% remission. Although her symptoms do return if she discontinues the product but, as long as she takes it she is fine. Maybe it was just a fluke in her case but, I don't know. If you want anymore info just let me know :) Jeff
I think it's a great idea. Maybe we should set up a time, say 2-3 times/wk when we know others will be available to get on the chat. I no longer work, but am on Pacific time. That said we could post when we are having a "support room chat". Time, day, etc.
Just some ideas but it's great to speak with someone in real time.
Ann, maybe the bigger chat room, if you go using the link at the top of the page header might work better? I'm thinking maybe it could be worked on so that the font was a size bigger, and in bold. Usually you can do it online in chats in your personal prefs, but just learning about how ning works. I so get the vision issue, my year old bifocals are not helping much after only that short time. And, I don't have the same challenges as you.
Ann A. said:
Have fun in the chat room. I will respond to people when they appear - especially when it is late at night and might be having some kind of crisis. But it doesn't work much faster than a discussion board and since the screen and box are so much smaller it is difficult for me to see with my diminishing vision.
DeAnne, so glad you feel it would be useful! I think doing several according to times good for different areas is a great point to make. I'm east coast. So even 7 pm for me would be 4 for others, who might be at work, appointments, making dinner, taking a much needed rest, etc. I'm so new, are there any members from over seas?
whathappensinvegas said:
I think it's a great idea. Maybe we should set up a time, say 2-3 times/wk when we know others will be available to get on the chat. I no longer work, but am on Pacific time. That said we could post when we are having a "support room chat". Time, day, etc.
Just some ideas but it's great to speak with someone in real time.
Alright, so there is some interest in getting together to chat, get to know each other, maybe learn some tips and tricks, LAUGH, whatever we all seem to need. If anyone is around on a different than US time zone, let me know.
I'm going to take this to the powers that be, suggesting informal chats, and make sure there are no objections to maybe setting some kind of schedule or even a topic. Start with 2. Me or someone else could post times each week, and topics, if any.
I'm going to post it to the site improvement group, and copy to the moderators I know of who I have seen being active lately. I want to be sure not to overstep bounds or step on any toes. So no, don't ask for a place on my dance card unless you have steel toed shoes, ha ha. Co-ordination and rhythm are not my best qualities.
Will post back as soon as whatever is decided. No decision, we can just pick a time and get together. hugs!
You know I will talk anytime I have the time. Let's set up some times starting this coming week. We have several new "lupies" maybe our first chat should be on just "what to expect for a newbie". You know what I mean...the 400 doctors, the gallons of blood taken for tests, what results mean, what to expect physically, etc. Just an idea. If you want to start with something else by all means let's do that. I still think 2 times a week, just because there are some days that some of us can't physically get on the computer.
Let's use what Ben and JC have been so wonderful to set up for us.
