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Well, I am on a roll tonight I guess.

While this post may not succeed in the 'brevity' department, I have taken Ernie's words to heart and thought over this topic for a long time (I have been busy in my mind Ernie!)

I am not sure how to even approach this subject.

I am wondering if others are feeling the way I do? After the recent 'conflict' that led to the change in Forum rules, I have been feeling a real loss. I find that I feel like I am walking on eggshells about what to and not to post, about what is off-topic and what is not.

I want so much to follow the rules b/c Michelle is president and I want to honor her hard work and dedication by doing that. And since she does the bulk of the work financially and time-wise, she has to do what is necessary to preserve her sanity! The last thing I want is to see this forum shut down b/c we have burned her out!

Still, I am sad and feeling like I don't know what really counts as being related to Dysautonomia and what is not. I really miss the off-topic discussions. I find that I feel less connected to many of you and don't get to keep up with you all in the same ways we did before the changes.

Some days the very last thing I want to do is read about POTS. But, the first thing I want to do is check in with all of you. And maybe hear about a good book you have read, an outing in your wheelchair, what you find to bring you joy on hard days. I love teaching Corina idioms or just getting off on random tangents.

While I understand some complaints about religion and also other 'off-topic' threads making it hard for 'newbies' and others to navigate, I also feel like these are so crucial for coping with this illness.

This site is so well laid out. The oldies spend a great deal of time nourishing newbies and answering their questions. Many do not stick around for long, but we help them while they are here. Like Ernie said, many of us oldies, need ways to connect too and sometimes I think that is with off-topic posts. While I always want to help the newbies, and hope they stick around, I have not always been able to keep up with them while I am so sick. But, I still need to check in with something familiar and maybe laugh or joke with someone on board.

I am very committed to helping others with this illness, and hoping that their road will be easier b/c of something they heard here, but I also think the oldies need nourishment from each other...and we don't always have a 'POTS question'...but if we can't nourish each other, we won't be here for the newbies...so the cycle is bad!

If you do not agree with a post...just don't reply or don't read it?

Also, the search function is fabulous and you can skim through what you want on a topic and skip the rest.

There is tons of 'technical stuff' on this site...Michelle has a ton of links, research articles, Q and A, plus a newsletter.

What I find invaluable about this site is the connection to others struggling with a chronic illness. I am a young woman who is homebound. While I have amazing friends who support me unconditionally...they are not home during the day to call or check in with. This site is always here...even at 4 in the morning when I can't sleep. They also cannot understand some of the little things that you all do. They are not going to want to have an discussion about idioms! But, that has brought me so much joy!

I have learned so much here, not just much about POTS, but about the human spirit. Coping with this illness. Enduring the rough times. Being more compassionate and loving. And, while I know that religion can be a divider sometimes here...I find it very helpful to hear how others, regardless of religion, reconcile their suffering and their faith. I have also met more Jewish people here than in my whole life and that has helped me so much.

Some of us here are high-functioning and relatively 'well', others feel awful while still maintaining a job or raising children, while others, like myself are homebound and struggle with loneliness and isolation. I miss the day-to-day blather that we used to have. I hate having to question my every word and wonder if it will 'rock the boat.'

For me, this site and this community are about how to LIVE with this illness and how to thrive the best that we can. Some days for me, that is just knowing that Corina is sitting in her garden pondering a new idiom or that Merrill planted some impatiens after her sinus infection or that Steph got a new puppy to help her through her days...

I understand Michelle's dilemna, and I am saddened that she has had to spend so much of her precious energy dealing with complaints about off-topic posts. I am posting this b/c I wish there was a way to resolve some of the tensions that I have felt on the site lately. Maybe I am the only one who is feeling this way, but I am doubting it...and I have felt so disconnected from some of the 'oldies' that I used to know what was going on with them day to day. For me, the connections here have been crucial to my healing and coping. Without you all during the GB surgery and all the cards and all of that...I cannot imagine!

Okay, this is a book and no one is going ot have the concetration to read it! So sorry! This has been on my mind for so long...

I want to do a fund-raiser for DINET, and have promised Michelle an email. I am a person of my word. So, why haven't I sent her an email? I had to 'dig deep' and explore why...and I think it is b/c I have felt scared about our little community after the 'shake up' and sad...and worried that we wouldn't be strong enough to support a fundraiser...

I hope some of you will have thoughts on this...and I hope that I have not put Michelle in a horrible position...that is not my intention. My intention is to help rebuild some of the community that I feel has been struggling a bit lately..

Later Alligators!

Emily

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Em et al -

I hope that I'm not stepping on others feet due since I'm pretty new here myself, but I'd been lurking long before posting...and have been involved elsewhere & am not new to the illness thing. So...just a few thoughts...

I think that a lot of it is about balance. And common sense. I hope that doesn't sounds insulting....it is not meant to. What I mean is that I am pretty certain there's no intent for you or anyone else Em to be super worried about what is or isn't allowed. In my opinion (correct me if I'm wrong), many of the things you mentioned are VERY related, i.e. a good wheelchair outing, a good read, etc. For me these things are VERY related...I'm just now getting over the wheelchair "hump" and am glad to be able to read at all as at my worst I haven't been able to, ya know? I'm sure there are some things that are borderline, but I dunno...I keep coming back to the balance thing....

I don't know what my comments are worth and please don't take them as anything fool-proof. I"m fully aware that I'm just beginning to approach the not-quite-a-newbie category:-) Like has been mentioned, it saddens me that Michelle had to put so much into revamping things and just as much that others are feeling worried now about what is or isn't okay to post.

In terms of new folks navigating, I do agree that while I come here for people who "get it" it can also be good to see non-illness related things b/c so often the approach taken is so different than those for whom illness is not an issue, ya know? It's just a different perspective....And then of course there's the fact that it is good to talk about other stuff. I do agree with that wholeheartedly, but am not sure where the line is to be drawn...not an easy thing to sort out...

One thought, which I know is easier said than done, is perhaps a separate category for "fun stuff" or the like? Subtitle could be "stuff for when you need to get your mind off of docs, meds, & BPs"? Just a thought...I know that lots of separate strands can be a bit nuts & counterproductive as one never knows where things should truly go, but one of that nature would seemingly be fairly self-explanatory...

Well, so much for keeping it short. Again, I hope I'm not stepping on any toes. I think that first and foremost this place is awesome and so very appreciated by myself and so many others...more than even make themselves known I'm sure. Things that are superficial are usually fairly "easy" and "conflict"-free....so in a way, it's a compliment that tougher issues/discussions arise...if no one cared about the board, no one would probably bother to voice thoughts/feelings at all, ya know?

Hang in there, ya'll. I know I'm not yet a veteran, but as a newbie who's planning on sticking around for the long haul, I need you all!

:-)melissa

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Hi Emily,

I have similar feelings to you. I am trying to post and feel the same way I was before the "crash" but I feel I have lost the regular nurturing I used to have. (I know that everyone was there and helped me deal with the death of my sister and I felt really loved and nurtured at that time. ) I am talking about nurturing in general.

I still read the posts but there is a bond that is broken. I have the feeling that even if I try hard to help others and be part of the group I can loose that "family" anytime. It's like being stuck on a boat on the ocean when there is a tornado coming. Even if I hang on to the rail the boat is unstable and I have no control over nothing.

I am afraid that it is becoming an "intellectual" place and that we are loosing our family bonds. I just don't know what to do to lift the spirit up again!

Ernie

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Emily, thank you for your post. I know it was hard to write--that you had to "dig deep," as you said, to find the words to express how challenging these last weeks have been. I'm glad you wrote your post--I didn't know that you've been struggling this way.

I was reading posts daily when the "conflict" took place--and almost immediately afterwards, my own life took a fairly sudden turn toward upside-down...and I haven't read any posts in a really long time. This is the longest "break" I've taken since joining the Forum fifteen months or so ago. I have no idea what's going on; your post, Emily, caught my eye when I signed on tonight, and I don't know (yet) whether anything precipitated it or whether you're just expressing long-felt sentiments.

I don't have the time or energy to catch up on everything and everyone, but I hope you all know that I hold you in my heart and think about you every day, even when I'm not reading and responding to posts. You all have changed my life for the better ... your courage and strength in the face of adversity, your humor, your common sense, your wisdom, your advice--I've benefited from all of it (and from all of you who so generously share these things).

I am confident that whatever growing pains we're going through at the moment are just that ... the commitment that oldies and newbies alike feel for each other and for the Forum will see us through. Indeed, healthy relationships (built on more than just dysautonomia) have been established through this forum, and I truly believe that they will continue to grow and deepen with time. And those of us who disappear for periods of time, I hope, will be welcomed back like long lost cousins who show up at dinnertime and eat up all the cookies meant for dessert. :P

Love,

merrill

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Guest tearose

What's that? Did someone mention cookies? :P

I too have been out of the loop and missed any conflict that may have happened!

I certainly don't feel any different coming back on board after all my recent family distractions. In fact, because I learned here through others and my own experiences with life with dysautonomia, I knew I could not be both places and stay healthy!

Anyway, for what it is worth, sometimes what our "leaders" must say and do really is not to keep us from behaving as we do...but to protect us from the type of people who would change the nature of our group in a negative or prejudicial way. What I am trying to say is that maybe the new rules are directed at the "trouble makers" not us real good folks!

We will see I suppose. All this thinking about things I know nothing about is not good for my fragile autonomic nervous system...so someone please clue me in!

going for the warm milk and honey now as I scroll through old posts to see what I missed...

I guess I'm pulling an all nighter?

take care "family", tearose

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hmmmmm....note the number of oldies that posted on the off topic subject of songs. At one time, everyone would have chimed in, so to speak.

I too feel that something here is very tenuous and that makes me pretty sad. I have felt like this is my family. That part of the family that really gets it. Whether it's good, bad, or has nothing to do with the facts, just something we want people to know about.

I was very pleased to see people come out of hiding for Ernie and for Jan and Jeff. But I wonder how long they waited to post, knowing these things don't have to do with "just the facts" about the ans.

There is so much more to our lives than our illness, and if all I want to do is stew about, I can curl up on my couch and do that. But I come here for laughs, tears and sometimes to think about something other than my illness. There was a time it was okay to do that. The newbies do it, but the oldies are now afraid of it.

I think it was very brave of you Emily to broach a subject we are all thinking about. But I have no answers, because I too am afraid of being the one to break this fragile thread that has appeared. I am more than happy to donate to something that has my heart in it, and I have. But right now my heart is a little unsure about being trampled on. I think the people oblivious to this are lucky, But for how long? morgan

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I've only been on this forum for a few months, but already I feel like I know so many of you, largely from reading posts and enjoying how each individual shares and encourages others. I have noticed too since the "conflict" that many of you are much more cautious in your posts and it makes it much harder to get to know you.

I think this caution though, shows a lot of respect and thankfulness for Michelle and all her hard work as well as a love and need for this forum. I too have a wonderfully supportive family and a large church full of people who care about me and my family, but no one understands what it is to live with this like all of you do. There is a deep connection in sharing the same kind of symptoms and daily struggles even when the severity varies among us. But there also needs to be familiarity with each other to enjoy the encouragement we get.

I would heartly agree with Tearose. I think we should view the "rules" as boundaries to protect us and our friendships. I think people like you Emily have great intentions to keep this forum appropriate. You respect others and value getting to know them. When we respect each other, we can express differences without hurting.

I try to come to the forum with full expectations that we are all different people with different backgrounds, religions, race and even sex. And I enjoy getting to know each and every one of you. I figure that Michelle is doing her best to keep the forum that way and that if at anytime she should need to send me a personal message about editing a post, I need to view it as her caring for us as a whole. I think that any of us who really care about the forum could take her input that way because we want what is best for each other!

Emily, I think your forum name suits you perfectly. You are like a dancing light - I can always see the twinkle in your eye when I read your posts. I'm sure Michelle is sad that you feel so unsure about posting and I hope as time goes on you feel that our community has been rebuilt and is even safer and you can let your light dance freely again!

~Roselover

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To Emily and others who have posted on this subject...

I have felt the same way. I have been hoping that time will heal the rift and the uneasiness that many of us feel. I think it will. As Tea and Merrill said, they weren't event there was an issue. I think in time we will all feel more comfortable again within the forum's new boundaries/guidelines. I think we are all still afraid of getting our "hands slapped" so to speak in front of others if we say the wrong thing or post an off topic subject. Don't get me wrong, I certainly understand the need for rules and appreciate Michele's hard work and diligence. However, I think Sunfish's idea of having a separate "Fun stuff" area might help resolve this dilemma and let us feel more comfortable about opening up and expressing ourselves once again.

Anyway - just wanted to say I still think the world of all of you and I am so grateful this site exists. I'm sending out great big hugs, cookies and tea to everyone. Maybe we can have a "let's get re-acquainted party! B)

Gena

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I didn't read everything that's written here (yet) but I wanted to let you know that your post could have been mine Emily. It made me feel very sad. I soooo miss being in contact with you during the day (eventhough there is this time difference I hate sooo much). But it also makes me wanting to fight. Not fight against the forum rules, because I very much appreciate Michelle making and keeping us safe but I want to fight to keep the bond we have. It is SO special and like you said Emily our friends aren't around during the day and they can't understand everything we're going through. I can take that because I have all YOU. I LOVE to learn new idioms from Emily or anyone who wants to join us, I LOVE to "hear" Merrill say "Peace" and I found Nina's idioms from her Greek friend (hope I'm correct Nina) hilarious. I often look at Roselover's gardenphoto and imagine how it must be to see ALL of her garden and I mourn for Ernie and her sister. And that's just a few of us (can't think of anything else right now B) )

I don't have answers, but I want you all to know that it's still making me sad but maybe time will work wonders?

Corina

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Emily

Thank you for having the courage to say what you did. I couldn't have said it better, well we all know that because I usually let attitude interfere so I've completely steered clear of the subject all together.

Ernie, Morgan, Gena nicely said guys. Melanie, Tearose, Corina and everyone else, it was great that you all chimmed in too.

Let me reiterate that I agree with everything Emily said, thank you Em!

Steph

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Hi everyone,

I was supposed to be taking the next two weeks off from moderating because I am swamped, but I didn't want to stick poor Nina with this one. B)

The forum guidelines were put into place to protect each of you and to keep things on track. This is a dysautonomia forum. Our name is the Dysautonomia Information Network. Dysautonomia is what we are all about.

I think about 99% of what is posted here does relate to dysautonomia. Wheelchairs and coping mechanisms certainly do relate to dysautonomia.

The new forum guidelines did not stem out of one incident. If you stop to read them, you will see that "solicitation" was probably added to the most. There was a reason for that. Updating the forum guidelines is something that I have been needing to do for a while.

Again, most of the posts here are completely relevant. We have made exceptions for some off-topic posts, which you can read in the forum rules. And please do not be afraid of being publicly embarrassed on this forum. I really don't slap people on the hand in front of others. If it ever gets to the point that I am publicly confronting someone on the board it is only after I've done so privately and they have ignored my warnings, or because they are r-e-a-l-ly out of line and acting up. We have a "tone" that we have set on our forum, and we work hard to keep it. We want this place to be positive, caring and supportive. Yes, there are times when we all need to vent and rant -I am fully aware of that- but if people are rude, argumentitive, insulting, or completely negative in all posts and to others etc. I am not going to let them continue to participate on our forum, and I do that for the sake of all of you.

Let me tell all of you a little about my life....

I work three days a week in the reference department of a public library. I have a teenage son....and everything that goes along with raising a teenager. I have a husband who I try to devote evenings and weekends to. I have to keep up on the latest research to keep the website up-to-date....a monumental task. I currently have a stack of research papers on my desk waiting to be added to the website. I create DINET's newsletters. I greet each new person who signs up with DINET and send them an informational brochure. I try to keep in touch with our medical advisors and volunteers, though they are often neglected as I often have no extra time. I have (often lengthy) phone calls with members who request them. I have projects that DINET is working on that I need to focus on and/or oversee. I have a messy house that I keep saying I am going to get to one of these days... I am writing a book (not related to dysautonomia). I have 3 crazy dogs that I try to walk every day for their (and my) exercise. I usually have at least one appointment a week that I must attend on my days off. I live in the country, so to go to stores, appointments, etc. I usually have to drive an hour or more. I have a chronic illness (POTS) that leaves me feeling unable to focus and work the way I need to on some days.

I could go on, but I think you guys get the point. My life is busy, and burdened with chronic illness on top of everything else. I wish I could throw "moderating an off-topic forum" in there, or to say I have extra time to moderate off-topic posts on this forum. I honestly just don't have the time. The off-topic posts are the ones that cause the most conflict between members, and cause the most complaints to me. I have worked one too many evening late into the night trying to mend hurt feelings after reciving a flurry of emails because someone posted something someone else did not like....and it had absolutely nothing to do with dysautonomia.

Also, I am well aware of the dangers of making a forum where I say, "Go ahead, have a free for all". I know it would make some of you very happy....for a little while. But when you visited it and found links posted to porn sites, people arguing with you, people solicitating you, etc. you would be the first to get offended and send emails asking me to remove the offending posts.

I have to use caution and common sense and put guidelines on this forum. Take a second to think about why you came to this forum....I'd venture most of you were trying to learn about dysautonomia. Now take a second to think about what you like on this forum....I think you will realize that our forum is enjoyable because we don't tolerate certain behaviors.

Please understand that I am a dysautonomia patient just like you guys. Everything I do with DINET is completely voluntary. I recieve no compensation, and no one hands me a ribbon or pats me on the back at the end of the day. DINET is a job. I have taken it on, without any compensation, because I feel passionate about helping people who have dysautonomia.

I'm sorry if some of you do not want to support DINET as a result of my decisions, but ultimately I am doing my best to keep the group -as a whole- happy.

Michelle

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Hi Everyone

This discussion is very important--especially if this number of people are still feeling concerned and frustrated.

I feel compelled to respond because much of this is a bit puzzling to me, and also because I want to express my complete support for Michelle and her decision to update the rules. (And I know that everyone, especially everyone responding to this message so far, does completely support Michelle.) It seems to me that there has been a misunderstanding, perhaps. I think that "coping", an important element to managing POTS, that includes things like outings, books, etc. is not off-topic. I even remember Michelle stating in a previous thread that the idiom discussion, in that context, is ok. I have to admit being out of the loop regarding recent conflicts or perceived conflicts, so I don't understand the connection of particular events to the updating of the rules.

Moderating a board that includes truly off-topic conversation is a huge job. Not because of 99% of the people who use it, but because of the 1% who will abuse it at any opportunity. Anyone can sign on and become a DINET member and start wreaking havoc--until stopped by the moderators.

I agree with Sunfish that we just have to do our best (as she said--use common sense. And I am also not implying that anyone doesn't have this!). If you are concerned that something may be off-topic b/c it is not directly related to dysautonomia, but you really want to share it with the board, I would suggest putting the word "coping" in the subject title line. This helps everyone understand the connection.

I also want to encourage members to use the Faces of DINET site to build on our friendship and support, beyond discussion of treatment, coping, managing our shared condition. I know it is not a forum, but there is lots of room to put up all kinds of photos about your life and things you care about. There is also a commenting feature, that I have activated, for now. You can comment on anything you want, and in this way hold conversation, as long as there is no profanity, discussion of politics or religion (must conform to the DINET forum guidelines in that regard).

If you want the URL, please send me a private message. I also do not want to moderate inappropriate discussion and to keep that to a minimum, I am keeping the site address private, and only available to DINET forum members.

Katherine

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Michelle, thank you so much for taking on the response to this one. I came home last night after Teri and I went out with my Mom & her husband for Father's Day, and I'd decided to sleep on my response because I wasn't quite sure what, exactly, I was going to say. This issue isn't an easy one, and the lines Michelle has to draw to keep this site useful, friendly and safe take much thought.

I would just like to back up what Michelle said about the flurries of emails when there's a problem with a thread or a post. Michelle and I make a habit of informing people privately that a post has been edited or deleted--we don't often provide redirection on a post pubicly, and you should know that if we do, there's a reason behind it. In addition to the phone calls Michelle makes to new members or members in need, some of those calls are also to me to help me with issues that have arrisen here... and sometimes those calls are lengthy as well.

I can attest the fact that there have been dozens of major and minor issues with members on this board, and exmembers, that have taken hours upon hours of her time and mine to address sensitively, with the best interest of everyone here in mind. The changes in the rules were more than a year in the making and gelled after multiple issues along the same themes.

I feel so strongly about the type of lifeline this site provides to others, and selfishly, to me--that I will continue to volunteer my time. Like a relationship, this forum will evlolve and change over time. It will be what we make it. Please don't think you're being stifeled in any way; we're all learning as we go forward.

Nina

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Hi To All;

I was reading all of the post to this subject and felt I needed to put my 2 cents in!! I have been here since March, or around that time. I have read the forum rules when I started and since then I have read updated clarifications of those rules a few more times. The rules seem very clear cut to me.

This is the DYSAUTONOMIA INFORMATION NETWORK. I understand that it used to be POTS place and that some of you have been here for a very long time. I understand why Michelle changed it from POTS place to DINET. From what I read all of the post here have been very informative and extremely supportive. ALL of the REGULARS here seem to be very friendly, loving and supportive people who really care about helping others. After Michelle posted her explanation here, again, and explained her extremely hectic schedule I hope everyone understands the complete task she has before her. And, with having POTS herself should help to put everyone in her shoes to see what she really has to tackle.

I hope I don't offend anyone by saying this, but, the referance to NEWBIES and OLDIES should not be used. I'm sorry but this puts a stigma on people new to the site and it also divides members into 2 catagories. WE ALL bring something to the table to make this forum a helpful tool for people newly diagnosed with Dysautonomia. Someone may know all there needs to know about POTS, but they might not understand about irritable bowel or NeuroCaridogenic Syncope, which are also factors of Dysautonomia.

I don't think anyone did anything wrong to cause the clarification about the rules. If I may use a metaphor it would be this:

The Dysautonomia Information Network is like a train. We all get on this train looking for answers and support from others who have the same situations as we do. At first we were scared. We were just passengers. Then we learned more and gain confidence to become a boxcar, or a passenger car filled with experience and information ourselves. Which is very important here because this is the train a new comer with Dysautonomia wants to get onto looking for new information. And remember, the tickets are free!! Also, when we, ourselves need information or support we rely on eachother.

Now this train is growing longer and longer. Each seperate car has something to offer to new passengers, which is equally important to the other cars. Michelle's job is the Engineer and Nina is the conductor helping Michelle. Michelle has to drive the train, look out for oncoming trains, make sure that the tracks are clear from debris so we have a smooth ride, and has to check out all new boarding passengers. She also has to follow the rules of the national railway system. She does all of this and has to find time for her own life with her family and other aspects of her life.

I think the recent misunderstanding stems from some people feeling that they have done something wrong. My guess is that no one has. NO ONE HAS CAUSED A TRAIN DERAILMENT!! One of Michelle's jobs is to make sure that HOBOs don't get on the train for the wrong reason, and that some of the cars don't jump the track. I feel that this car has and is still chugging along smoothly. But, and I hope I don't offend anyone, each of us as cars is not solely owned by DINET. We can stop and sit in a train yard somewhere and visit with other cars. OR Someone can even become an engineer of another smaller train and cars can go from trainset to trainset. (meaning getting together in a seperate chat rooms somewhere else to visit with eachother or getting personal e-mails and conversing that way on a more personal level)

But with Michelle's hectic schedule, she may not have any time to set chat rooms up. I am sure it is also expensive to add this feature to this site. That doesn't mean that it can't be done. There are plenty of us here to go off and start these different kinds of things.

I feel that DINET is a wonderful place with some very wonderful people. Michelle should be commended for getting the train rolling. And now because of this site there are much more people that know even more about Dysautonomia. And if some of us want to branch off and start chat rooms, support sites or heck even cyber card playing leagues that would be wonderful. The more we spread the word about this illness and the more we support eachother the better. But I do agree with Michelle, this site is for Dysautonomia Information. This is the hub and it is a great place to start. KUDOS to Michelle!!!!!!

Again, I hope I didn't offend anyone. Take care!!

KathyP B)

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Emily,

thank you for posting this, because you said what I felt. I didn't read everything because I couldn't. But I think we can rebuild this. We all care so much for eachother and have so much in common that I think we were all kind of shocked but are able to feel how we felt about this place. And I can't thank Michelle (and NIna) enough for keeping us safe because that's soooo very important, but we don't need to loose our very special bond, in sharing the things we want to share.

So: I'm up for learning some new idioms (if ever you can think of one) and I also wanted to let you (and others) know that this sunday was just great because we have very high temperatures in the Netherlands so that I could spend a lot of time in the garden. I even was in my garden until 10.45PM!!!! I'm usually in bed by that time, but it felt sooo great to be outside that I kept on delaying that. Now it's almost 11.30PM so I HAVE to hit the hay, but I'll be back tomorrow!!!

Love,

Corina

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i am feeling a mix of emotions about what i have posted...and i am making myself sick over it all! :lol: the last thing i wanted to do was upset michelle and nina, but i also think this is a very important topic to discuss, given what so many of us are feeling. in that sense i do not regret my post...but i do in the sense that i put michelle and nina on the spot. :(

i want to say to michelle and nina that my post was made with the best of intentions and an intense love and commitment to this community. it was not meant to be unsupportive.

i am still thinking through some ideas and thoughts but want to do a bit more 'processing' so that i say things to the best of my ability.

this community is an absolute lifeline to me. the response you all gave validated what i am feeling, and renewed my passion to help work on some solutions. the fact that so many of us posted is a testament to how much we honor what michelle has created and how much we want to respect her needs.

i am working on the problem solving part and will get back to you all in a couple of days.

in the mean time, i'm more than gray tonight, so gotta go fall over...

thank you all for reading, thinking this topic over, replying and caring...

emily

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I'm sorry that some of you are still unhappy with the new forum rules, but these are the new guidelines and I ask that you please respect them.

Please understand that those involved with DINET took a great deal of thought and time in creating the new forum guidelines. While we appreciate feedback, we ultimately are the ones who have to deal with problems, and are therefore the ones who will work on solving problems.

Sincerely,

Michelle Sawicki

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I am reminded of an old Zen story ....

Two monks are walking along the banks of a river and come across a beautiful woman who wants to cross to the other side. As not to ruin her garment, one of the monks carries the woman to the other side of the stream and the two brothers continue their journey in silence. After several miles one of the monks turns to the other and says "I can't believe you did that! You know we are not allowed to touch a woman and you picked her up in your arms! I can't believe you picked her up." The other monk smiles and says "Dear brother, I put her down hours ago why are YOU still carying her?"

I think I probably asked before, but does the host ISP for this site offer CGI or PHP space so we could set up a chat room? That might help people feel more connected without logging more topics. If not, I can certainly offer to set up a BLOG for anyone interested. There are several free BLOG providers and it only takes a moment to create.

Another thought ... we need a PARTY. We can set up a virtual meeting on AIM, Yahoo or Skype whatever else your'd like. We can get together once a week, once a month or just once in a while and have real conversations.

Just let me know how I can help.

My deepest thanks for Michelle, Nina and all those who help support this information resource. DINET has changed my life.

Good thoughts,

EM

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Here is a post in which we discussed chats:

http://dinet.ipbhost.com/index.php?showtopic=2622&hl=chat

I'm sure many people would enjoy chats, blogs, virtual paties, etc. I certainly will not be offended if some of you branch off and create your own supportive resources.

Michelle

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Michelle, Nina, et al -

I just wanted to chime in with a thank you & an echo of support for all you do. While I do agree with the spirit behind the concern of keeping a family feeling on the board, to me that isn't in conflict with the new rules. Like you (Michelle, I think) have affirmed, posts about coping, etc ARE okay & being related to Dysautonomia is A LOT more than simply medical info....it's about how we live - with the illness - and this living includes a lot....struggles, victories, etc. I hope I'm not speaking out of turn, but I think some may think the new rules restrict more than they actually do. There are so many things that are still totally okay to talk about...Ultimately rules/regulations are to protect & help the group (not to mention to hopefully keep things a bit more sane for those in charge!) Ironic as it is, rules often bring with them more freedom...b/c of the safety they help to ensure.

Thank you all for letting me be a part of this community & by keeping on with it through thick & thin.

love & hugs & smiles & sunshine,

:-)melissa

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Hi everyone,

Sunfish, you took the words right out of my mouth. I think there are plenty of things to discuss without offending anyone. My whole life seems to tie into POTS. I suppose that is sad, but true. I suppose we could always email a fellow member directly at their personal email address if both members desire.

Michelle, you are incredible. Thank you for everything you do!!!! You should get a huge pat on the back, lots of pats.

Why don't we just try to do what we think follows the rules without looking too uptightly over our shoulders? If we are sincerely trying, and stumble, I bet Michelle will nicely let us know.

Karyn

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Sunfish, you are not out of turn....I think you understand were I am coming from. Again I will say it: 99% OF THE POSTS ON THIS FORUM ARE FINE AND DO FALL WITHIN THE FORUM GUIDELINES.

Emily, you have brought up idioms again and I did discuss this in a previous post. I do not find anything wrong with you and Corina discussing idioms. You have continued to do so in posts that do relate to dysautonomia, and I have not edited the posts in which you have. So that should tell you something...

Do I think that entire topics only on idioms geared toward one person are appropriate for a dysautonomia forum? No, I honestly don't, because then someone else will post another topic that has nothing to do with dysautonomia, and then someone else will. And, while your posts may be few and far between, totally generic and cause no flame wars, the next ones may be daily, and/or may discuss topics that do stir debate. Do you see how this can spiral out of control?

So I ask that everyone just use common sense and try to stick to the topic at hand. Books, music etc. certainly do fall into "coping mechanisms." However, even when it comes to discussing music and reading material I ask that everyone please use common sense. For example, please do not post that the latest issue of Hustler has some great articles that you used as coping mechanisms. :D

You see, common sense... :P

If anyone does post something that is out of the forum guidelines we will let that person know. So please continue to enjoy yourselves, and know that if you haven't heard from Nina or myself you are doing all right.

Thank you to everyone who expressed kind words and support.

Michelle

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I also was absent from the forums during any conflicts. That is because I got tired of dealing with my NMS and just had to back away from things for a while. I guess I was also in a POTS hole and decided to rest there for a while.

I have another forum I go to that is a women's forum. The ladies there provide a lot of support and it gives me another outlet for myself. Guess I felt like I was getting too narrow and felt like I wanted to branch out a bit.

The support here is amazing; but I have dealt with this so much that I feel like I can't let it completely take over. I have had to make some huge changes to my life since I got sick so now I am trying to put myself back together and getting a "social life"; even a cyber social life is, I feel, a step in that direction.

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Michelle and Nina,

Do you think that there is anyway we could send you two to the DINET spa for a bit? So that Michelle can take her two weeks away now? I am so sorry...I have very bad timing I think...(you know, like Sunday nite paging my doctor, Christmas day GB attacks, that sort of thing...)

Michelle,

I am sorry for the undue stress I have caused. Truly, truly sorry...

I think that maybe the most appropriate place for Corina and I to take our idioms would be on the new Faces of DINET site, if Katherine would be okay with that. We could 'comment' on them under Corina's picture? I do agree that they aren't really coping or related at all, not in the way a good book is! :) They are just super-fun!!!!

I want to thank everyone who has helped me think this through and discuss it for their KINDNESS and GENEROSITY. This site is so important to me, and the people I have met here are AMAZING! I could not do this without you all. I want so much for our community to work b/c the last thing we need is to be divided...we need to be united in our fight against Dysautonomia!

I hope that in time we will all begin to feel a little more at ease and heal. Although I know this was stressful for Michelle and Nina...and, let's just say, I made myself sick over it...it was truly a testament to the QUALITY of the COMMUNITY that has been created by Michelle and Nina. They do keep us safe and they do keep this environment positive. That is why so many of us came here in the first place, b/c it is such a 'warm fuzzy' place to be. And that is why we cared so much about trying to restore what some of us felt was lost...

I guess conflict is inevitable in this world...we fight with our non cyber families too! But, it's hard.

One thing I think that I feel is that I just have had trouble understanding the new rules and not knowing what was appropriate, despite the discussions of the, which I have read over several times. I am wondering if a way to frame it is to say does it relate to "living with dysautonomia"? Does that make sense? Then, it's not just totally off topic, but it does include things that make our lives better (or harder) like getting a new dog, having a family conflict, etc. Yet, it doesn't include articles from Hustler magazine! It leaves room for good judgment but not for a free for all!

Hopefully this makes sense, without stepping on toes.

I may be a bit quiet here for a bit, as I have a bunch of visitors coming in from out of town in the next month. Like Tearose said, I have learned that I cannot be both places at the same time. I am not really up to visitors yet, but regardless, it is good for the soul and will nourish me, even if I crash even more afterwards. I'll try to check in as much as I can though...and I am going to work very, very hard to be a 'DancingLight' to the community...b/c it means A LOT to me.

Goodnight...here's hoping all of us insomniacs get some sleep tonight!

Love, Emily

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Michelle -

what?? no hustler magazine?? i'm so disappointed:-) lol...just wanted to thank you for that laugh. it gave me a good chuckle to go to bed with tonight...

:-)melissa

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