Wayne,
The only thing that I can add is that time is often a premium for me. The faster I can see all of the recent posts, the more time I have to respond to them. I know on the old board, I often just went to the Kitchen, because I was in a hurry.
Love, Jean
Thoughts About Splitting/Adding Forums
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Wow, this is a tough one - and I don't envy Wayne at all having to make major decisions like this. And they ARE major, because the framework and layout of this new board is so very critical to it being the success we all hope it will be. It's too hard to fix things later - much more effective if we can get it right from the beginning.
My thoughts: Simplicity. Too many boards overwhelm me and intimidate me. I get frustrated having to look through too many different headers just to try and figure out where I want to start reading. Obviously we need them broken down and organized, but we need just a few MAJOR boards, and then... can we break those boards into more detailed forums once inside?
We need a board about diet. We need a board about meds. We need a board containing factual articles relating to this disease for people who aren't search-savvy on the internet. And here's a suggestion that I'm stealing from one of the turtle forums I belong to: a board that is for URGENT, CRITICAL questions. I find that helps me a lot when I'm looking for info about turtles, and it's comforting to know that if I have something that needs attention QUICKLY that I have a place to go where I KNOW it will get seen and responded to quickly. Once that chain or thread gets less time-sensitive, then it gets moved to the main message board. If, for example, a newbie is having severe pain or bleeding, they don't want to sift through 200 posts about how our days are going... they want to be able to say "SOS - I'm scared and in trouble here - please get serious for a moment and help me."
If we had that, then we wouldn't have to worry about segregating the Newbies from the main message board. Let the newbies read and observe the casual, fun banter, knowing when something is critical with them there's a place they can go for that, too. I don't like the idea of keeping newbies off the main message board.... I think many will be put off and offended and think this is a "cliqueish" place if they find they've only been let onto certain areas and might feel like an outsider. But then again, I felt like an outsider when I joined the old board because everyone seemed to be "old friends" and I felt left out or like I didn't want to intrude on a private party, so maybe that's an argument TOWARDS keeping newvies out of a room. Darn, this is very difficult!
I know whatever Wayne decides will be the best answer.... hope our "thoughts and opinions" aren't making it harder for you, Wayne!
Sue
My thoughts: Simplicity. Too many boards overwhelm me and intimidate me. I get frustrated having to look through too many different headers just to try and figure out where I want to start reading. Obviously we need them broken down and organized, but we need just a few MAJOR boards, and then... can we break those boards into more detailed forums once inside?
We need a board about diet. We need a board about meds. We need a board containing factual articles relating to this disease for people who aren't search-savvy on the internet. And here's a suggestion that I'm stealing from one of the turtle forums I belong to: a board that is for URGENT, CRITICAL questions. I find that helps me a lot when I'm looking for info about turtles, and it's comforting to know that if I have something that needs attention QUICKLY that I have a place to go where I KNOW it will get seen and responded to quickly. Once that chain or thread gets less time-sensitive, then it gets moved to the main message board. If, for example, a newbie is having severe pain or bleeding, they don't want to sift through 200 posts about how our days are going... they want to be able to say "SOS - I'm scared and in trouble here - please get serious for a moment and help me."
If we had that, then we wouldn't have to worry about segregating the Newbies from the main message board. Let the newbies read and observe the casual, fun banter, knowing when something is critical with them there's a place they can go for that, too. I don't like the idea of keeping newbies off the main message board.... I think many will be put off and offended and think this is a "cliqueish" place if they find they've only been let onto certain areas and might feel like an outsider. But then again, I felt like an outsider when I joined the old board because everyone seemed to be "old friends" and I felt left out or like I didn't want to intrude on a private party, so maybe that's an argument TOWARDS keeping newvies out of a room. Darn, this is very difficult!
I know whatever Wayne decides will be the best answer.... hope our "thoughts and opinions" aren't making it harder for you, Wayne!
Sue
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
Hi Tex,
I must just say that finding the old board, and meeting you all was a real life saver to me. When the doctor here in UK told me after i had a biopsy that i had MC, that was all he did tell me, he new nothing about MC and therefor offered no information about it.
It was only after coming to the board that i realized that i did,nt have a brain tumour because i was going mad with headach's or that i did'nt have bowl cancer because every single thing i eat went straight through me, and that the arthritus was just about driving me mad. I was'nt told by any doctor that the MC caused other things in fact Tex if i wanted to know anything at all i think i drove you mad because i would rather ask you than ask any doctor over here. And then to read that people with MC do go out for a meal and that they do go on holiday's well that was a real bonus. So what ever you all decide to do, please make all information concerning this horrible disease availeble to newbies, and let them now that we can laugh about having a sore bum, or that we have all had accidents and then perhaps they wont feel so bad. And i now feel that i have a lot of friends that i feel as though i can share any problem with and they are always there to listen and help, even though i do talk crap sometimes lol lol.
Well thats all i have to say,
So bye for now God bless all, and be happy.
Love Bobbie.
I must just say that finding the old board, and meeting you all was a real life saver to me. When the doctor here in UK told me after i had a biopsy that i had MC, that was all he did tell me, he new nothing about MC and therefor offered no information about it.
It was only after coming to the board that i realized that i did,nt have a brain tumour because i was going mad with headach's or that i did'nt have bowl cancer because every single thing i eat went straight through me, and that the arthritus was just about driving me mad. I was'nt told by any doctor that the MC caused other things in fact Tex if i wanted to know anything at all i think i drove you mad because i would rather ask you than ask any doctor over here. And then to read that people with MC do go out for a meal and that they do go on holiday's well that was a real bonus. So what ever you all decide to do, please make all information concerning this horrible disease availeble to newbies, and let them now that we can laugh about having a sore bum, or that we have all had accidents and then perhaps they wont feel so bad. And i now feel that i have a lot of friends that i feel as though i can share any problem with and they are always there to listen and help, even though i do talk crap sometimes lol lol.
Well thats all i have to say,
So bye for now God bless all, and be happy.
Love Bobbie.
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moremuscle
- Rockhopper Penguin
- Posts: 706
- Joined: Wed May 25, 2005 6:16 am
- Location: South Carolina
My turn 
I joined because I was terrified by my disease. I was in shock after having received my diagnosis - a chronic disease, ME?!^#@&*A^$&* Where do you go when your world is shattered and the doc doesn't know how to help you?
I was pretty sure I had Celiac Disease - because I had symptoms much like my mother had had 10 years prior and her diagnosis was Celiac Disease. My GI told me, no, I did not have Celiac Disease, I had Microscopic Colitis. I thought it was a BUMMER - I would much rather have had Celiac Disease since I knew you could live a good life with that disease. Oh well, I read posts on Sally's board and noticed that several members were on a gluten free diet and claimed to have their MC symptoms under control with dietary means. I was touched to tears to find that there were people out there just like me - and it did take me a little while to decide to post to Sally's board because I have never before joined an online discussion group. I felt like staying annonymus and thought I would just post once.....
Many posts later; here I am
I think newbies should basically have access to everything as soon as they register. I think we need to give the newbies a little credit - they are not dumb and they will be able to find the information they search for or else ask how to find it. I agree with those who've said that structure is not going to solve all the problems - it's just there as a framework; it should not become a maze.
I loved the old board and I love this board too - the members and the way we use the framework provided to us is what creates the life, the support, the help, the information, the love.
Love,
Karen
I joined because I was terrified by my disease. I was in shock after having received my diagnosis - a chronic disease, ME?!^#@&*A^$&* Where do you go when your world is shattered and the doc doesn't know how to help you?
I was pretty sure I had Celiac Disease - because I had symptoms much like my mother had had 10 years prior and her diagnosis was Celiac Disease. My GI told me, no, I did not have Celiac Disease, I had Microscopic Colitis. I thought it was a BUMMER - I would much rather have had Celiac Disease since I knew you could live a good life with that disease. Oh well, I read posts on Sally's board and noticed that several members were on a gluten free diet and claimed to have their MC symptoms under control with dietary means. I was touched to tears to find that there were people out there just like me - and it did take me a little while to decide to post to Sally's board because I have never before joined an online discussion group. I felt like staying annonymus and thought I would just post once.....
Many posts later; here I am
I think newbies should basically have access to everything as soon as they register. I think we need to give the newbies a little credit - they are not dumb and they will be able to find the information they search for or else ask how to find it. I agree with those who've said that structure is not going to solve all the problems - it's just there as a framework; it should not become a maze.
I loved the old board and I love this board too - the members and the way we use the framework provided to us is what creates the life, the support, the help, the information, the love.
Love,
Karen
Hi Tex
Am I still a newbie?????
I joined the old board because I needed info fast to make this go away. After looking into other sites, I found that this one (the old one) had the best & most knowledgeable people who really cared about one another. I had never been involved in another website & couldn't believe how helpful & supportive you all were. Not sure I would have liked being "segregated" from parts of that site. I have never liked having other people make decisions for me. I never felt pressured to do anything by any of you & found diet & medication ok here. 
I say let it roll & let people find what they need here or not. Really believe the universe brought me here & that your gentle loving energy will draw people who need to be here. 
Love & light, Rita
Am I still a newbie?????
I joined the old board because I needed info fast to make this go away. After looking into other sites, I found that this one (the old one) had the best & most knowledgeable people who really cared about one another. I had never been involved in another website & couldn't believe how helpful & supportive you all were. Not sure I would have liked being "segregated" from parts of that site. I have never liked having other people make decisions for me. I never felt pressured to do anything by any of you & found diet & medication ok here. I say let it roll & let people find what they need here or not. Really believe the universe brought me here & that your gentle loving energy will draw people who need to be here. Love & light, RitaGluten, Dairy, Eggs, Soy & borderline yeast
Truth
To tell you the truth, think I came back a year after just looking at the GMB because I was sooo desparate at that point -- just no where else to turn.
Instinctively, I just knew I wasn't going to get anything but long term medication when/if I returned following the path report. That scared me, particularly since the migraines were already worsening without having that as a side effect, but I was also worried about things like liver damage, and unknowns that always seem to be showing up after years of a drug being on the market that everone thought was safe.
Other than replacement of hormones from thyroid and ovaries that were removed, I've not been faced with the prospect of having to take something forever. Funny but I'd not ever considered the possibility of that being a problem for me, but when the issue arose, suddenly I understood why people say they don't want medication. Somehow, a short term round of something isn't as scary.
Don't think I've ever mentioned this before, but I was on fairly long term tetracyclines during adolescence, but probably had fairly long breaks between long stretches of taking them when things would clear up for a while.
(Remember Polly mentioning that?)
Anyway, I needed confirmation that the dietary route was legit because I'd never heard of this disease, much less the relationship to food reactions.
At that time, I'd never heard of Dr. Fine, so to me, that was just another name on the internet, and you read all sorts of things there. The board helped me to find people who could explain 1:1 in a reasonable (not tree-climber way) why it worked. ("Why" was my very first spoken word, by the way! Ha!)
I'm thankful that the people who would've tried to discredit the dieters weren't around to discourage me then. Guess I'd still be suffering, big time if they had, not because I wouldn't have recognized the legit posts, but because they would've started one of their messes, and diverted the focus from helping people.
Also, I'm so grateful because I was able to help my younger sister before hers got as bad as mine. (I'm almost 6 yrs older.)
Think you've all heard most of this before, but it's true.
Sally, you SAVED my life, my friend!!! Doesn't that make you feel all goose bumpy!!!
I just wish I'd read in the other rooms on the old site the year before where I would've run into some invaluable articles, etc. My mistake, but we've got to find a way to keep other newbies from overlooking things, and I think what's going into place is going to do it. Soooo excited!!!
Yours, Luce
Instinctively, I just knew I wasn't going to get anything but long term medication when/if I returned following the path report. That scared me, particularly since the migraines were already worsening without having that as a side effect, but I was also worried about things like liver damage, and unknowns that always seem to be showing up after years of a drug being on the market that everone thought was safe.
Other than replacement of hormones from thyroid and ovaries that were removed, I've not been faced with the prospect of having to take something forever. Funny but I'd not ever considered the possibility of that being a problem for me, but when the issue arose, suddenly I understood why people say they don't want medication. Somehow, a short term round of something isn't as scary.
Don't think I've ever mentioned this before, but I was on fairly long term tetracyclines during adolescence, but probably had fairly long breaks between long stretches of taking them when things would clear up for a while.
(Remember Polly mentioning that?)
Anyway, I needed confirmation that the dietary route was legit because I'd never heard of this disease, much less the relationship to food reactions.
At that time, I'd never heard of Dr. Fine, so to me, that was just another name on the internet, and you read all sorts of things there. The board helped me to find people who could explain 1:1 in a reasonable (not tree-climber way) why it worked. ("Why" was my very first spoken word, by the way! Ha!)
I'm thankful that the people who would've tried to discredit the dieters weren't around to discourage me then. Guess I'd still be suffering, big time if they had, not because I wouldn't have recognized the legit posts, but because they would've started one of their messes, and diverted the focus from helping people.
Also, I'm so grateful because I was able to help my younger sister before hers got as bad as mine. (I'm almost 6 yrs older.)
Think you've all heard most of this before, but it's true.
Sally, you SAVED my life, my friend!!! Doesn't that make you feel all goose bumpy!!!
I just wish I'd read in the other rooms on the old site the year before where I would've run into some invaluable articles, etc. My mistake, but we've got to find a way to keep other newbies from overlooking things, and I think what's going into place is going to do it. Soooo excited!!!
Yours, Luce
And I'm so glad, Luce!!!!!!!!! Thank you.
After reading all of the posts and thinking it over for a few days, I have two things to say. One, I definitely think the newcomers should be able to go wherever they want to on the Board. Two, I like someone's idea of having an Emergency Room where people (new or old) can go when they are in deep poopoo, as it were. I'm sorry I can't remember who said it, but it weren't me. The idea of segregating the new people from us "old" people doesn't sit well with me. Yes, this is all confusing at first (so is everything in life), but I think we have enough forums directed to newcomers that it ought to set them out on the right path. The thing is we can't possible cover everyone's needs as much as we would like to. The people who come here are smart and savvy and they will find their way. I think tinkering with it as little as possible is the way to go.
Just my 2 cents.
Love,
Sally
After reading all of the posts and thinking it over for a few days, I have two things to say. One, I definitely think the newcomers should be able to go wherever they want to on the Board. Two, I like someone's idea of having an Emergency Room where people (new or old) can go when they are in deep poopoo, as it were. I'm sorry I can't remember who said it, but it weren't me. The idea of segregating the new people from us "old" people doesn't sit well with me. Yes, this is all confusing at first (so is everything in life), but I think we have enough forums directed to newcomers that it ought to set them out on the right path. The thing is we can't possible cover everyone's needs as much as we would like to. The people who come here are smart and savvy and they will find their way. I think tinkering with it as little as possible is the way to go.
Just my 2 cents.
Love,
Sally
Mitakuye oyasin
(Lakota for "We are all related")
(Lakota for "We are all related")
Hi, Sally and all:
I'm not surprised you can't remember who mentioned having an "URGENT" room... it was in one of my "rambling" posts. I got the idea from a turtle room I subscribe to and it's a God send.
So basically what I think we're all saying is:
Sue
I'm not surprised you can't remember who mentioned having an "URGENT" room... it was in one of my "rambling" posts. I got the idea from a turtle room I subscribe to and it's a God send.
So basically what I think we're all saying is:
- - Not TOO many different message boards
- Don't keep the newbies out of any areas
- Create an "URGENT/EMERGENCY" board
Sue
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
I have thought about this for a few days and promised to give my 2 cents when I came to an opinion.
I like the idea of an "Emergency Room" - Now that the thought is out there - I think it is invaluable.
I like the idea of newbies being able to access the entire board. If I were not allowed into a room - I would LEAVE - it could be considered clannish/cliquesh or just plain rude.
If an emergency room (pardon the pun) is created, this group of people would go out of their way to welcome and make that person feel comfortable. They will eventually jump right in like the rest of us.
There are many of us out there who don't have anyone to "let it out" with - no one can relate to our condition - they can sympathize but not relate. It is important to let everyone know that we are encouraging comaraderie and laughs! Laughter can make the world of difference when sick.
I also believe that we need to keep the rooms for medical, diet, links and just for fun, etc.! When a newbie is welcomed, they can be referred to each room to look around and then by reading they will begin to ask questions that will lead them in the direction that is right for THEM. This eleviates the "pushing" of something on someone who does not want to go "our/your/my" route to wellness.
This board is compiling tons of information as the days go on. I like the option of searching for something - I would hate to have posts pruned and lost forever. I don't have the "cure" for the bandwidth and/or backup problem if we don't but I think it is important for information to be kept. Maybe Christine or Trent would be able to brainstorm on a safe way or alternative to the length of time needed on the dial up system.
OK, I have rambled on for quite some time now. I just know that what we have is precious and needs to be preserved for everyone now and in the future! Our cumulative minds are an outstanding testament that life continues inspite of this damn disease!!!!!!!!!!!! And boy, can we LAUGH!!!!! Life can be fun!
OK - I'm done! 
I like the idea of an "Emergency Room" - Now that the thought is out there - I think it is invaluable.
I like the idea of newbies being able to access the entire board. If I were not allowed into a room - I would LEAVE - it could be considered clannish/cliquesh or just plain rude.
If an emergency room (pardon the pun) is created, this group of people would go out of their way to welcome and make that person feel comfortable. They will eventually jump right in like the rest of us.
There are many of us out there who don't have anyone to "let it out" with - no one can relate to our condition - they can sympathize but not relate. It is important to let everyone know that we are encouraging comaraderie and laughs! Laughter can make the world of difference when sick.
I also believe that we need to keep the rooms for medical, diet, links and just for fun, etc.! When a newbie is welcomed, they can be referred to each room to look around and then by reading they will begin to ask questions that will lead them in the direction that is right for THEM. This eleviates the "pushing" of something on someone who does not want to go "our/your/my" route to wellness.
This board is compiling tons of information as the days go on. I like the option of searching for something - I would hate to have posts pruned and lost forever. I don't have the "cure" for the bandwidth and/or backup problem if we don't but I think it is important for information to be kept. Maybe Christine or Trent would be able to brainstorm on a safe way or alternative to the length of time needed on the dial up system.
OK, I have rambled on for quite some time now. I just know that what we have is precious and needs to be preserved for everyone now and in the future! Our cumulative minds are an outstanding testament that life continues inspite of this damn disease!!!!!!!!!!!! And boy, can we LAUGH!!!!! Life can be fun!
OK - I'm done!
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." -- Buddha
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Barbara5603
- Little Blue Penguin
- Posts: 28
- Joined: Tue May 31, 2005 7:38 am
- Location: Rochester Hills, MI
Hello All
Haven't been here in a few days, but wanted to join in on this discussion. I joined this group almost 3 years ago because I was stressed, needed information, and was certain I was the only person on the planet with this disease. Logically, I knew that was not the case but it's not the type of topic you can just discuss with anyone now, is it? So here, or there, at the old board I found a bunch of very nice people who knew exactly what I was feeling and welcomed me.
I think simple is best. New folks will find their way around as I believe Sally stated and will settle in where they feel most comfortable. Let's not complicate things - yikes, I've only recently been able to log on and move around successfully and am still not sure what I'm doing
My 2 cents. Wayne, I'm sure you'll make a decision that suits everyone.
Barbara
Haven't been here in a few days, but wanted to join in on this discussion. I joined this group almost 3 years ago because I was stressed, needed information, and was certain I was the only person on the planet with this disease. Logically, I knew that was not the case but it's not the type of topic you can just discuss with anyone now, is it? So here, or there, at the old board I found a bunch of very nice people who knew exactly what I was feeling and welcomed me.
I think simple is best. New folks will find their way around as I believe Sally stated and will settle in where they feel most comfortable. Let's not complicate things - yikes, I've only recently been able to log on and move around successfully and am still not sure what I'm doing
My 2 cents. Wayne, I'm sure you'll make a decision that suits everyone.
Barbara