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mountaindreamer
11-08-2009, 11:36 AM
I am starting a "brain storming" thread. I have noticed so many new members who come here, post once or twice, and never return. I was wondering if there might be something that we could do as a group, that would raise our welcome above those at other sites. It might be that many of the new members just choose not to participate in a forum, and not that they choose another group over us. But, i would love it if we could think of something that would make them want to hang around long enough to see what we are all about, and what we can offer them. I am absolutely positive that the knowledge that i have gained from the generous sharing of personal experiences here at WHL, is the main reason that i have learned how to have a life while living with a painful and debilitating chronic disease. I wish no one had to face this disease alone...........and now, a second note, I continue to have problems with posting here at whl. New paragraph commands, and emoticon insertions just don't work for me (surely it is not user error, yeah right), and poor Rob, Saysusie, and Conrad have all tried to solve the problem, but it won't go away. So, after much worrying over this problem, i have decided to use multiple (............) to indicate a new subject. So, i will continue to be the whacky old lady from georgia who continues to struggle with all of this new technology - yeah, go ahead, laugh at me, my own kids just giggle and run when i mention computer problems...............my love to all of you.

BonusMom
11-08-2009, 11:58 AM
I can't figure out the emoticons either, Mountain Dreamer, so you're not alone.

As to the Hit and Runs, I think that people are researching their symptoms and when they come across the forum they ask questions and then, when they figure out the don't have have SLE, they abandon us (sniff, sniff). When I looked the other day at how many registered memebers we have, I was astounded! Then, you see how many of the users have -0- posts, I wonder how that could be. Perhaps Rob or Conrad could enlighten us???

tiggerlishus - Heidi
11-08-2009, 03:15 PM
i second that bonusmum but i also think it could be just getting used to it all i know it took me awhile to post but now you can't shut me up!! :-) hehe well some times then when either other life stuff takes over or not well brain memory wise!!

on a different front phyllis i'm originally from georgia i was born on a airforce bases near alanta! mum used to cal me her gorgian peach! x

Tamy
11-08-2009, 03:50 PM
I just want to say, to anyone who is reading this, and is thinking of not coming back, WHL is a place where you will meet amazing people, make new friends, and be able to share what is on your mind, with great feedback from people who are experiencing the the same thing. Although I do not post so often, I keep myself updated each day, with all the new posts. For me WHL is a place where I can come to, and know that I am not alone. I don't know anybody around me who has lupus, so nobody really understands the way I feel. Coming to this forum helps because I know that most of us are going through the same thing, and although I have never actually met anyone on here, I still feel like i'm apart of something. Since learning about my autoimmune problems 2 years ago, this is probably the safest i've ever felt. Coming here has taught me, that together we can help, not only ourselves, but each other.
Tammy.

mountaindreamer
11-08-2009, 04:23 PM
thanks tammy, that was beautiful.........Heidi - a georgia peach, wow what a small world. I know which air force base you are talking about, i watch military planes from there each day. Now, i will think of you each time i see one of the planes.

rob
11-08-2009, 04:55 PM
I can't figure out the emoticons either, Mountain Dreamer, so you're not alone.

As to the Hit and Runs, I think that people are researching their symptoms and when they come across the forum they ask questions and then, when they figure out the don't have have SLE, they abandon us (sniff, sniff). When I looked the other day at how many registered memebers we have, I was astounded! Then, you see how many of the users have -0- posts, I wonder how that could be. Perhaps Rob or Conrad could enlighten us???

Unfortunately, the majority of "people" you see on the members list are spammers, and many, are not even people. They are "bots" of one sort or another. Bots are automated programs spammers use to flood message boards/forums with spam. A better way to gauge an actual number for how many members we have, is to look at the active members number at the bottom of the main site page. I believe right now we have about 170 active members, not bad.

As far ideas for better welcomes, I am all ears, and open to any ideas you guys have.

Rob

Bonita
11-08-2009, 05:20 PM
I for one are so glad i found this site. It has enlightened me so much on things i had questions about and i have met so many kind and caring people who are in my shoes and i am thankfull for each and every one of you. Love and prayers Bonita

iseedeadmonkeys
11-08-2009, 05:25 PM
Hey mountain....

I like this thread its a good one,

we have the arcade what more could ppl ask for lol

i would like to see more polls...me....i like them :yes: o0o0o0o there goes an emote lol about the only one i use here

ISDM
xx

Lala
11-08-2009, 09:43 PM
I don't post often, but I read alot, and play in the arcade alot...

smokerscat94
11-08-2009, 11:23 PM
I don't know why! I love this site it has been very helpful for me in dealing with my issues. I don't know what I would do if this site didn't exit! Thank you all for being there for me!

tiggerlishus - Heidi
11-09-2009, 09:36 AM
thanks tammy, that was beautiful.........Heidi - a georgia peach, wow what a small world. I know which air force base you are talking about, i watch military planes from there each day. Now, i will think of you each time i see one of the planes.

yer i still have some family on my dads out there to, as well tenneasse, and albama and many other place in the states( sorry was in usa long enough for complete usa history!! well that my excuse and sticking to it lol! :laugh:)
i would actually like to do a tour of states and visit all my blood family and all my whl family in one big go!! think it would take me abotu a year!!! :wacko: hehe but getting back on subject! . . . . .

. . i like idea of polls also think maybe some sort of sectoin where people can ask about how to get about the site i know i still struggle now if i want to look for something particular in a thread its why i end up starting alot of threads only idea might even be away and i just don't know about it lol!! x

iseedeadmonkeys
11-09-2009, 10:47 AM
LOL lala

Noticed you like the arcade somewhat....like me :yes:

magistramarla
11-09-2009, 11:06 AM
Rob,
OK, here's my idea, borrowed from the Officers' Wives' Club. Perhaps we need a Newcomer's Chairperson - someone who has been designated to keep an eye on the Newcomer's Forum and will befriend them and guide them to the other fora.
Perhaps several of the "old-timers" can take turns being the Newcomer's Chairperson. I've seen Rob doing this on his own, but it would be nice if the rest of us would pitch in, too. How about volunteering to be NC for one month at a time?
Marla

mountaindreamer
11-09-2009, 11:21 AM
Marla and heidi, I love love love both of your ideas. I think comprising an easy starters guide to exploring the forum would be of great benefit. Also, i love the idea of a NC (newcomer's chairperson) for a volunteered amount of time. Rob and Saysusie each do an incredible job of watching out for us and protecting us from spammers and abusers, and if they are in agreement, i agree with both of these ideas.

SandyR
11-09-2009, 05:27 PM
Phyllis -
What a great thread! I love Marla's idea of the welcome committee! My suggestion is that either there be a way to duplicate a newbie's first posting to the New Member's page so we can see when they post in case we miss it on one of the other pages OR I remember there were perimeters to what you could post as a new member so if you are required to post in New Members section within your first 3 posts/comments that would guide new members there as well. Really I guess these ideas would be something that Conrad would have to work out.

Also - I was reading what you all said about why people don't stay and, having checked out alot of other forums/support sites, I would add to that list that this site is a place that is based on positivity and love. As much as that is what we all love about WHL, there are ALOT of other people living with AI diseases, or sickness in general, who only want to (fill in the B word that means complain) and who feed on negativity and complaints and other's misery. To those people, we are not a good fit for them, and I say good thing too! :laugh:

Sandy

mountaindreamer
11-09-2009, 07:10 PM
hi sandy, wow, you are getting technical, but some great ideas. These posting guidelines could be included in the general forum navigation instructions.........I too love the positive attitude that we share with each other, but I am most impressed with the non-judgemental and accepting nature of our members. Sometimes we all just need to get something off of our chests, the great thing is that there is always someone around ready to help us back up.

rob
11-09-2009, 07:39 PM
Rob,
OK, here's my idea, borrowed from the Officers' Wives' Club. Perhaps we need a Newcomer's Chairperson - someone who has been designated to keep an eye on the Newcomer's Forum and will befriend them and guide them to the other fora.
Perhaps several of the "old-timers" can take turns being the Newcomer's Chairperson. I've seen Rob doing this on his own, but it would be nice if the rest of us would pitch in, too. How about volunteering to be NC for one month at a time?
Marla

Excellent idea Marla. Let me ponder that idea for a bit, and see what other ideas come up, and also see what Saysusie thinks. I definitely think your idea is do-able.

rob
11-09-2009, 07:55 PM
Phyllis -
What a great thread! I love Marla's idea of the welcome committee! My suggestion is that either there be a way to duplicate a newbie's first posting to the New Member's page so we can see when they post in case we miss it on one of the other pages...

:laugh:Sandy

Many newcomers make their first post in an existing thread, and they can easily slip by and get lost in the crowd. I try to watch out for this and let people know that they will be far more visible if they start their own thread with it's own title, but I don't always catch up with all of them. For someone not familiar with an internet forum such as this, I'm sure some don't realize they've put their important first hello in a thread where it gets lost in the crowd. I'm sure some think they are being ignored, and do not come back.

We'll have to run your ideas across Conrad and see what he thinks as he handles the technical stuff.

One thing we can do, is if one of you see's a newbie post their 1st post in an existing thread, send them a message about making it their own thread and intro so they don't slip through the cracks. Or, an easier way would be to simply make a note of it and send me a pm with the users name, and I'll send them a message and get them on track. Although I don't post every day, I am here at least 3 times a day, every day, and I have pop-up notices here and on my pc desktop that tell me if I've recieved a pm here so I can respond as quickly as possible. I put a priority on any issues or questions having to do with site and members concerns.

So far you guys have some good ideas, keep them coming.

Rob

dsunshine
11-10-2009, 12:30 PM
I am thankful for WHL and its members that have reached out to me. As the saying goes...you can lead a horse to water but you can't make him drink! So, sometimes people just want to vent for the moment and find support and others stick around. Like going to meetings or church or belonging to any group for that matter. I don't think the numbers are what is important I am happier with the quality in those numbers and I have to say the quality of members that check on me/vice versa or who provide input is outstanding!

pandagirl
11-10-2009, 05:58 PM
I guess some people are just "fishing' around for answers and either they don't think this is what they really suffer from or they might not want to know:wideeyed: All I know is everyone here gets "it". Unless you suffer with this nasty disease you don't understand. People have said the most ignorant things to me and I just don't know how to respond sometimes. If ever I were to say I feel my leg "buzzing" during the day, my co workers would be like... whhatttt? I know you understand and it is a great feeling to not have to explain 'it' and get so many helpful answers to so many questions.Thanks to all of you !<3

TERI A.
11-10-2009, 07:35 PM
Hi All, I do not post often,but I look almost everyday at the new posts. I can't begin to tell you how thankful I am for this forum. Nobody wants to hear about your illness and if they do listen, they just don't understand. I have learned so much from all of the posts I have read. Many times I will be having a new symptom and I wil be reading posts and find someone who is posting the same thing. It makes me feel validated to know there is someone out there experiencing the same thing as me. I have been diagnosed with a Lupus like auto immune problem,but the doctor says he is not ready to say it is Lupus. I don't want to claim something I don't have, but all of the signs and symptoms are there. I take plaqenil 200mg twice a day and melexocom, not sure of the spelling, for inflammation. just keep posting and God Bless You All.

rob
11-11-2009, 07:37 AM
Hi All, I do not post often,but I look almost everyday at the new posts. I can't begin to tell you how thankful I am for this forum. Nobody wants to hear about your illness and if they do listen, they just don't understand. I have learned so much from all of the posts I have read. Many times I will be having a new symptom and I wil be reading posts and find someone who is posting the same thing. It makes me feel validated to know there is someone out there experiencing the same thing as me. I have been diagnosed with a Lupus like auto immune problem,but the doctor says he is not ready to say it is Lupus. I don't want to claim something I don't have, but all of the signs and symptoms are there. I take plaqenil 200mg twice a day and melexocom, not sure of the spelling, for inflammation. just keep posting and God Bless You All.

I know what you mean Teri. Healthy people just don't understand. And it's even more difficult when you are waiting on a diagnosis. You are not alone.

Rob

debbie-b
11-11-2009, 08:04 AM
Hi All, I do not post often,but I look almost everyday at the new posts. I can't begin to tell you how thankful I am for this forum. Nobody wants to hear about your illness and if they do listen, they just don't understand. I have learned so much from all of the posts I have read. Many times I will be having a new symptom and I wil be reading posts and find someone who is posting the same thing. It makes me feel validated to know there is someone out there experiencing the same thing as me. I have been diagnosed with a Lupus like auto immune problem,but the doctor says he is not ready to say it is Lupus. I don't want to claim something I don't have, but all of the signs and symptoms are there. I take plaqenil 200mg twice a day and melexocom, not sure of the spelling, for inflammation. just keep posting and God Bless You All.

I am with you, this forum has been a blessing. Even though, I have a very understanding and supporting husband, he does not fully understand. But how could he? When I come here, I KNOW that people know exactly what I am talking about.
I have found myself not answering some posts, because I just don't know what to say, it is hard sometimes to find encouraging words, when you feel like crap yourself. But I will try and do better and answer posts as well as I can.

Debbie

MLockwood
11-11-2009, 08:15 PM
I have learned so much from everyone here! As someone who comes and goes, I am not cheating on WHL, I just don't always get on this site. Probably due to denial! Although I have not been 'diagnosed' with lupus, I do have many of the same symptoms. It is nice to have the support of all of you and I tell my family and friends about this site and encourage them to either join or at least visit. I think they can get a better idea of what I am going through by reading what you all are experiencing. Good and bad. I am not a one hit wonder to this site, I do gain valuable information. I am just so new to this disease and it's cousins, that I can only post what I know. Which is not much right now... I think you all are fantastic, amazing, caring, encouraging and inspiring!

abbasgirl
11-12-2009, 09:37 AM
I'm part of the group that sometimes doesn't know what to say.

I'm afraid I may say something stupid sometimes and make someone feel worse. With the emo issues I've been through lately and the meds I've been on, I'm getting even better at putting my foot in my mouth so I've been quieter about sensitive things.

Sometimes my fog is so bad I just can't think of how to put something too.

I don't see anything wrong with this spot at all. I visited lots of places and tried to "talk" with others but this is the only place I found where I felt like I could just open up and talk and feel comfortable. What stands out is the acceptance and love. I got a lot more than informative conversation when I first posted and I was floored...still am.

joaney
11-12-2009, 05:30 PM
Hi Phyllis
It's been a long while since I last posted something..but it's not because i've forgotten all about you guys, but because of, well, there's a few reasons I guess. I stop by here about once a fortnight, I don't always log on, because i'm not replying to any posts, but I always catch up with what you guys are doing, and most importantly, how you guys are. The thing is this...When I first registered with WHL, I thought it might help to vent, and let things out. I guess we all react differently, to different things, and for me, I think it may have made me more sad and upset to read what most of you have to go through, and to think that one day it might be me. I guess different things that work for some people, may not work for others. I really wanted to be apart of all this, but found myself getting even more frustrated because...none of us deserve any of this. My heart goes out to everybody on here, but I hate the sadness, and the misery, and all the worry...and I don't mean to offend anyone, I think it's great that this forum helps so many people, and don't get me wrong, I still come by to check on how your all going, but sometimes it's too much to cope with. I think what works with me, is just trying to block all my ills out. I deal with it when i'm sick, and try to move along with life with every opportunity I get. When i'm having a good day, I try to forget about all the pain, and what might be in store for me tomorrow. I guess I try to just live for the moment, and while i'm having a good moment, I really don't want to be reminded about my lupus.
So Phyllis, some of us do come back, we are here, but not all of us are strong enough to deal with these issues on a regular basis. I don't mean to confuse anybody, it would be a lot easier to be able to explain out loud in words, I hope I explained myself properly, and i'm sure there are plenty others who don't "come back" for very similar reasons.

Joaney

mountaindreamer
11-12-2009, 07:17 PM
wow, i am honestly overwhelmed with all of the heartfelt words that were shared in this thread. I want to respond to everyone, but there is no way that i can say anything any better than each of you did.......... I went 13 years searching for what was wrong with me, all the way knowing that something really serious was happening to my body. When i was finally diagnosed, i guess i was already prepared for the news. I had already accepted the disease and its destruction. My daughters weren't prepared and they started out visiting whl so that they could learn about lupus, but they were overcome with the sadness, and decided it was best for them to be compassionate even if they can't understand the magnitude of this illness. And you know, I don't want anyone that I love to understand, because that would mean that they would have to experience something similar, and it would break my heart for that to happen. Everyone has to face their individual life invaded by lupus in their own way......Each of your testimonies demonstrate the diversity of our family, the acceptance of our members, and the common thread that bonds us together. Everyone is welcome here, whether you participate in posting or you make the occassional visit. The important thing is that we all put ourselves first, we become our number one advocate, and we have confidence in our decisions. thank you for reminding me what whl is truly about.

Saysusie
11-17-2009, 10:52 AM
This was/is a beautiful thread and I am so thankful that you started it. I have had my own hypothesis about why some members never return AND why some senior members discontinue their participation. From speaking to some of the senior members, I've learned that there reasons are similar to those expressed by Joaney and Mountaindreamer's daughters.....the overwhelming sadness!
This is a heinous disease that is so debilitating in so many ways. As such, many of us suffer greatly and have had to endure the complete loss of a lifestyle that we once enjoyed. Of course that makes us sad!
However, it is very, very important to me that WHL ALWAYS remains a place where we all feel safe to express every emotion that we feel while living with this disease; that we accept each and every person who is here seeking help; that we are always kind, understanding, supportive and comforting; and that no one is ever judged or criticized. One thing that our "lost" members have always made very clear to me is the fact that the people here have helped them immensely and that they felt as if WHL was like a family.
Even as such, we all, at times, need to take a break from our family/home and need to be somewhere that does not deal with our disease at all. A sort of "vacation", if you will. This, I completely understand and I totally respect.
WHL has been here for 8+ years, members have come and gone (for many varied reasons, I'm sure), but the heart and purpose of this site has NEVER changed. For that, I have to thank each and every one of you for being so kind, caring, understanding, and open! I'm not sure that we can do more than that, because doing what you do is beautiful to me!!
Thank All Of You
Peace and Blessings
Namaste
Saysusie

rob
11-17-2009, 11:35 AM
I agree with Saysusie, everyone needs a break from time to time. There's absolutely nothing wrong with that. The one thing that worries me from time to time, is that someone may choose not to come back because they felt like they were ignored, or somehow felt unwelcome. I have never seen anyone here do anything to ever make someone feel unwelcome, but different people can perceive things in a way that was unintended sometimes.

Like Abbasgirl, I sometimes find myself not knowing what to say. On the days when I have a clear head, the words just flow, but on the foggy days, it takes me forever just to compose a few lines. I know what I want to say, but I can't get it from my head to the screen. I would never want to say the wrong thing, especially to a person who is new here, and scared. I often struggle with how up front I should be to someone newly diagnosed. I don't want to sugar coat things, but I also don't want to make someone's fear even worse. It's a fine line I guess. The edit function is my friend for sure!

Rob

magistramarla
11-17-2009, 08:15 PM
Rob,
Edit, indeed! Are you still using that voice writing system? Right now, I'm sitting here quiet as a mouse, while DH is struggling with a voice writing system on his laptop. He's trying to save time on writing papers, but I swear I could type it much faster than what he's doing. I keep hearing him say "delete that" or "correct this" over and over. Sometimes he adds a few expletives that he then needs to delete!
I hope that yours works better than his.
Marla

rob
11-18-2009, 09:05 AM
It took some getting used to, but mine works pretty well. I had to tinker around with various settings, but I finally got it figured out. I have 2 PC's, but only one has voice recognition, so you can tell which one I'm using by seeing if I have misspelled words or not.

Rob

lindsayyy
11-18-2009, 11:04 AM
I try to write as much as i can. But sometimes i dont know what to say.. and sometimes i just dont know how to work this. lol

mountaindreamer
11-18-2009, 07:18 PM
well, i am just going to admit it......i have stuck my foot in my mouth a few times around here. So, private messages for apologizing are my best tool, I think my edit button is missing - i can't seem to find one on my keyboard.

rob
11-19-2009, 12:33 AM
well, i am just going to admit it......i have stuck my foot in my mouth a few times around here. So, private messages for apologizing are my best tool, I think my edit button is missing - i can't seem to find one on my keyboard.

You know, the smartest people, who have the most to say, often times think that they have stuck their foot in their mouth. Maybe they do, but it's better to just say it like it is and risk possibly saying the wrong thing, than it is always being safe, and never tasting a bit of the leather and rubber sole from time to time...

Numpty
11-19-2009, 05:49 AM
As someone that tends to drift in an out I can tell you that I don't feel great about it ~s~ I have a lot of junk going on besides (and including) my lupus at the moment but I'm getting some councelling for it and so hopefully things will begin to improve.

I don't post all that often anymore so as not to infect anyone with my deflated moods but I do happen by and read a lot. Especially when I'm having new issues or old ones rearing their ugly heads. I use the search tool a lot to look back through old threads instead of starting a new one on a similar subject so as not to litter the boards ~lol~ Maybe I should just attempt to start new threads just so I can say hello to everyone more often instead of wandering around her like some sort of annoying ghost!

I will try harder, I promise!

Numpt
xx

abbasgirl
11-19-2009, 11:29 AM
As someone that tends to drift in an out I can tell you that I don't feel great about it ~s~ I have a lot of junk going on besides (and including) my lupus at the moment but I'm getting some councelling for it and so hopefully things will begin to improve.

I don't post all that often anymore so as not to infect anyone with my deflated moods but I do happen by and read a lot. Especially when I'm having new issues or old ones rearing their ugly heads. I use the search tool a lot to look back through old threads instead of starting a new one on a similar subject so as not to litter the boards ~lol~ Maybe I should just attempt to start new threads just so I can say hello to everyone more often instead of wandering around her like some sort of annoying ghost!

I will try harder, I promise!

Numpt
xx

Numpty...I just wanted to offer you ((((hugs))) and tell you I don't think you can infect anyone with your moods. I've got some other junk going on too with counseling and I know what you mean... but I hope you'll post more often.

Bonita
11-20-2009, 05:46 AM
Dear Numpty I hope that you will feel better soon and the councling will help some of you problems. I think we can all relate to this in some way. Besides dealing with our health we also have family problems which seem to escolate at times and no one but people who have the same health issues we have can relate to things in our way. Love and prayers Bonita

rob
11-20-2009, 09:30 AM
Hi Numpty,

It's good to see you. You know, we don't mind listening. If you ever need to talk, there's no need to hold back. I hope all is well with you today, even if it's just for a little while.

Rob

mountaindreamer
11-22-2009, 08:27 PM
hi numpty, i am so sorry to hear that you have so much going on. I hope days get better for you, and please, don't ever worry about your mood. We all go through tough times, and venting here can often help.

take care, and check in again.

Saysusie
11-23-2009, 08:25 AM
This continues to be a beautiful thread and it serves to further demonstrate my opinion that this forum is filled with the most caring people on the web. I am so glad to hear the differing reasons why some members do not post often and am especially glad to hear the warm and comforting responses that they have received.
I know that even I, at times, find it difficult to post something positive and uplifting when I am in the middle of a lupus/fibromyalgia crisis. But, I always find that when I do post, I receive tons of understanding, support, and comfort.
So, I second those who have said that, even when you feel that you may be infecting us with your mood, we still want to be here for you, we still want to support you, and we will always understand how you are feeling and what you are going through.
Here at WHL, there is never a time when you will not be welcomed, comforted, and "loved" in our own special WHL way!

Love To All Of You
Peace and Blessings
Namaste
Saysusie

rob
11-23-2009, 09:04 AM
You know, I find listening to other people's problems and doing or saying what I can to help them is really a two way street. I get a sense of well being from being able to make a positive difference, or at least getting a smile from someone who is having a bad day, or is going through a rough time from all that we have to deal with. Basically, I think helping others also helps the helper.

Rob

Angel Oliver
11-23-2009, 10:22 AM
Yes Rob i like what you wrote and i second that! xxxx

Spanglishqueen
11-23-2009, 03:10 PM
This site is wonderful but I do agree it's sometimes too real and we mostly blog on our good days about our bad days because we are coping and sharing. When I read someone had a bad day I know I have had the same day at one time or another so I like to reply in order to help and let that person know they are not alone. Listening as Rob said is also medicinal for us, it's nice to be the giver. I haven't been on lately because the fatigue has made it to where sometimes I just don't even have the energy to type. Even I don't come on for a while, I think I will always come back even if just to read so I can feel normal. BUT NO LUCK I GOT A BIG MOUTH SO THAT'S WHY I'M BLABBING NOW! :laugh: Nice thread

Saysusie
11-24-2009, 10:09 AM
No such thing as a BIG MOUTH here!!! I agree with Rob 100%, it helps me immensely just to be able to help someone else. Even if I am unable to offer help, just to let that person know that I am here, that I do care, that they are not alone, and that they are important to me! Often, on my bad days, that is all that I need and, without fail, when I come here or PM someone, that is always what I receive.
Also, in this world of so much negativity...it is wonderful to know that there are people, from all over the globe, who are genuine in their willingness to give to others. In spite of their condition, they give of themselves to (as Rob put it) at least put a smile on someone's face!

Now, I am the moderator, so I am always going to read every single post (I may not respond to all of them because all of you do so well in responding) and I will always try to make sure that everyone knows they are important. However, each of you are free to pick and choose the posts you read and/or respond to. If you are not ready to deal with heavily emotional matters, feel no guilt at all in skipping those posts. I'm sure that this is much easier said than done, but there are times when that is exactly what you may need to do..for you!! Respond or read only those posts that move you, affect you, or that you want to share/participate in. Please do not beat yourselves up for skipping other posts that may seem to heavy for you at the time.
No member here is EVER ignored due to malice or uncaring. That has never happened here and I am sure it will never happen here. If you see a post that you cannot respond to, PM either me or Rob, and we will make sure that the poster is given what they need! I want this to be a comfortable, safe place for everyone, not a place where you feel obliged or stressed! OK???

Peace and Blessings
Namaste
Saysusie

wrightrs
11-24-2009, 12:45 PM
When I first came here. It took me a while to learn how to do this. I was new to he internet and forums. I would write in things but didn't know what to do after that. After I was here a while and learned how to do this. I looked at some of the threads I stated. You see at first I didn't know how to go back and read what others wrote me back. When read the old threads I cried because all the nice things people said. They where even trying to help me figure out how to do this but I didn't know it, because I didn't know how to go back and read it. Funny now !!! WHL has the best people in the world. I've always been a hyper person. I'm all over the place on the internet. I feel like WHL is everywhere I go. Because no matter where I go on the Internet I usually find some of our members there.

mountaindreamer
11-24-2009, 04:15 PM
hello becky,

so glad to hear from you. I have missed chatting, and hope to hear from you again soon. Keep in touch, lady.

Saysusie
11-25-2009, 10:25 AM
Hey Wrights! It has been a while. So glad to hear from you. I hope that all is well with you and that you have a very wonderful Thanksgiving

kim,l
11-25-2009, 02:53 PM
i do not know why people do not come back this site has been a life line to me i felt so alone till i joined now i have friendships i value very much and it has help me cope with the disease i am so very grateful; to be a member of this community. hugs kim l

mountaindreamer
11-25-2009, 07:29 PM
hugs back to you, Kim.

MicRoMediC
11-25-2009, 10:08 PM
I, like some, don't have a lot of time to get on here. I love getting on here to help me through tough times. It's here when we need it, most times I don't think about it unless I'm having a "bad day."

teresaa40
11-26-2009, 12:47 AM
I feel bad that I am not on here as much as I could be. I go in and out of participating. Some times my life gets too busy, sometimes I just have nothing to say. I just want to be left alone in my misery. Most of the time I forget. Plain and simple. My lupus brain forgets to check in.

Saysusie
11-29-2009, 07:29 PM
No Worries Teresa..I love your blunt honesty:laugh:.

MicRoMedic (& everyone else)...Just know that whenever you need us, we will be here for you!!

Peace and Blessings
Namaste
Saysusie

brandichi
12-07-2009, 10:50 AM
I want to be here more often than I am. I know I tend to pop in for a while, then disappear. I guess with me, when I'm feeling really awful I just withdraw completely and don't want to interact with anyone, not even online. I defnitely isolate from people in my regular life too. I don't know why, but it's something I learned over the last month that I really need to work on.

Then when I'm feeling great, I take advantage of it and go out and try to fully enjoy it as best I can - going out to see friends, shopping, spending more time with my family or volunteering at my church.

I guess I'm here when things are at neither extreme. And I feel bad because I really love WHL and all of you here. I've learned so much, laughed a ton, and I find myself thinking of so many of you when I'm not online. This is an amazing place, so much more than just a regular website. It's a community of caring friends, the one place I know we truly understand each other. So I'm going to really try to be here more often! :yes:

Saysusie
12-08-2009, 08:20 AM
Brandichi;
You are so sweet! We are always happy to see you when you are here and please know that, even when you are feeling down and in pain, you need not isolate yourself from us because we truly understand. Just like we understand when you need to away for a while. You are always welcomed back with open and loving arms...:grouphug:

Peace and Blessings
Namaste
Saysusie

brandichi
12-08-2009, 10:32 AM
Thank you so much for that, Saysusie. Reading this made me feel so much happier and it is so good to have this place where it's okay to just be me, with lupus, emotions and all! :cute:

abbasgirl
12-08-2009, 03:03 PM
Cheryl, it's so good to "see" you. :wavey:

Saysusie
12-11-2009, 09:32 AM
That is why we are here! So that everyone will always have a place to come to where they are always welcome, always accepted as they are, always understood and always valued and cherished!

Peace and Blessings
Namaste
Saysusie

luvpinkpeeps
02-03-2010, 12:59 AM
I know what you mean Teri. Healthy people just don't understand. And it's even more difficult when you are waiting on a diagnosis. You are not alone.

Rob

oh isn't this spot on! I have no one to really convey the feelings and symptoms with that does not want to change the subject OR either tell you to think more positively!

oh, and my fav is > get some sunshine.......um, no thanks.

Haggar
02-03-2010, 10:45 AM
The thing that makes it hard for me to come back is.....I have trouble remembering my login:embarrassed:

Nonna
02-03-2010, 11:45 AM
haggar,

My daughter keeps telling me to get a little balck book and write my logins and passwords down.
I really like your Star Trek emblem. Keep coming back; we are all in the case boast and help each other.
I agree with the others this is a good thread. I've been gone for a while myself. I have basically been very overwhelmed.
Hopefully it will be getting better now.

Nonna

Enjoy Life, live it to the best of your ability!

Numpty
02-05-2010, 06:39 AM
This thread made me wonder, has anyone seen SitsintheCorner recently? There's another person I miss! :(

laurid8967
02-05-2010, 07:16 AM
Hi all -
I have to say that this site - from what Ive seen out there - is the most welcoming site out there. I know that even before I was officially "Dxd" and was being dragged through the tortuous "limboland", I was treated here with love and compassion and support. Never was I given anything but reliable info and empathy from the members. I dont know of any other group where someone posts that they are new and no less than 5 (usually more) ppl welcome them - no matter what they have, dont have, been Dxd with.
I am in NO WAY saying that doing more is a bad idea - incidentally, MountainDreamer, I find your constant love and support for everyone quite beautiful and inspiring - but I have to agree that alot of people prefer to read and not post as much, and that the quality of people here - with regards to both info and compassion - is enormous.
In any case, I would be happy to be involved in any type of "welcoming committee"!! Mountain Dreamer, its people like you that make people like me feel encouraged enough to fight this disease. And, incidentally, you are certainly in good company on this site! Thank you..
Love Lauri

Saysusie
02-05-2010, 10:34 AM
Beautifully said Lauri! I certainly cherish Mountaindreamer for her gifts of compassion! In fact, as you mentioned, everyone here is, in their own way, a gift!!

Numpty; I have not seen SITC for quite some time. I am going to do a search to see when she last posted!

Peace and Blessings
Namaste
Saysusie

rob
02-05-2010, 11:11 AM
Of course, the flip side of the coin is that it's always great when people do come back after being gone for awhile. It's a nice reunion to see Lauri, Numpty, and so many others again. I have not heard from Susan (SITC) in a couple of months. I'll send her an E-mail.

Rob

laurid8967
02-05-2010, 04:09 PM
This is ALWAYS my first stop when my computer gets fixed!! I shouldnt be gone any longer tho...this laptop is new and working just fine..YEAH!! Its SO MUCH BETTER being connected to others when youre sick. For me anyway. Not there are not days that I can even think of OPENING the laptop nevermind typing....I def have those days too.
But I must say - its was nice to be missed!! LOL.
:lauri

rob
02-10-2010, 03:24 AM
The thing that makes it hard for me to come back is.....I have trouble remembering my login:embarrassed:

Too funny. I have mine written on a little piece of paper taped to the side of my pc! I've been a member for two years, and a mod for one. I'm here every day, but brain fog still causes me to forget! Grrr.

Rob

mabeljane
02-14-2010, 12:49 PM
Hi mountain dreamer, its a shame if people dont keep coming, I have just found this site, through searching the web, and it seems wonderful!!! just read some welcome posts, and they were very supportive, and obviously people have a sense of humour!! mvery important with an autoimmune disease. Anyway, hopefully this site is going to be vefy useful to me, and therefore others too!!!

Saysusie
02-15-2010, 06:53 PM
SITC's last activity here was on August 4, 2009. I've sent her a PM 'cuz I could not find her e-mail address. Rob, did you send her an e-mail??

Mabeljane; We are so happy that you are here and that you feel that this site can be useful to you. That is our purpose, to help you in any way that we can!

Peace and Blessings
Namaste
Saysusie

new to lupus
02-26-2010, 06:56 PM
Hi Mountaindreamer,

I just logged on and came across your name and I was curious to read what you had to say. Yes, thankyou, I don't ever post anything because the last time I did I was unable to navigate my way around here to read other people's responses to my questions. I guess I need to become a bit more savy with this technology..haha I absolutely love this site, I am on it all the time reading. So if you have any pointers on what or where I should be going please let me know. Thanks,

Cindy,
Be well

mountaindreamer
02-26-2010, 08:59 PM
hi everyone....wow, i have sure enjoyed reading all of the responses...thanks to each of you. this forum is truly a family, and is a daily part of my life....i appreciate and cherish all of you.

Cindy, please don't worry about getting lost here....i still get lost and have been a member for over a year. ha ha ha - but no one is surprised that i get lost - i am certified "computer illiterate". Just keep hopping around and see if you get more comfortable with the site. If not, i suggest you do as i do, and send a message to Rob....he is my on-site "help me i am lost" expert.

You know, i think we do an excellent job here, and believe we should just keep doing what we do....we are supportive, non-judgemental, and we always circle around anyone who needs a little extra encouragement.