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I have attempted to clarify the forum rules


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Michelle,

As always, thank you for making this forum so 'safe' and keeping it so well moderated. I really feel that is what makes this forum stand apart from others. That, and the great set-up, lay-out and people here.

I am wondering about one thing, and I am posting it b/c I am sure others are too. I know I am one of the ones who is guilty of going 'off-topic' (like teaching corina idioms...).

This is what I am so unclear about...I really have loved it and found so much joy in the posts about movies, music or books and just in general learning about folks here. I love getting to know people beyond their POTS and seeing people as more than just their illness. I love kidding with Corina and teaching her new stuff and having her teach me new stuff. I love the 'good news posts' about someone graduating or a happy birthday or holiday wish.

But, I also realize that these are not what the purpose of the forum is and that they can take up precious space that you have to pay for.

I guess, for all of us, could you clarify. I know, I am a noodge...but I don't want unintentionally be a person causing problems on this site!

THANK YOU FOR ALL OF YOUR HARD WORK.

I will be in touch with you and Nina both later this week to discuss fundraising. That's a PROMISE on my end, barring catastrophe! ;)

Emily

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Emily, if you are a 'noodge', then so am I. I am not sure exactly what the new rules are or the recent broken rule topics that made for an update of the rules. Am I making any sense? LOL.

I admit I, too, LOVE the 'occassional' fun off topic subject like favorite music or movie, etc. BESIDES, as many of us are semi-housebound, TV and music is often what keeps us company and distracts us from the complexities and physical limitations of POTS.

I don't see such posts so much as off topic but as 'coping mechanisms' of any chronic illness. I hope I offend nobody by responding to such posts in the past or by stating that sometimes OFF TOPIC stuff helps me....just speaking for myself of course.

Thanks to all for this site and peace,

Sophia

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hi everyone,

I'm assuming that something has been posted which is totally off topic, to provoke the reviewed rules of the forum? While I think it's important to remember that this is a forum for people with dysautonomia, I'm concerned that these rules unply every single post has to be related to the physical condition of POTS. Surely by talking about our achievements or concerns, our lives etc we are making valuable use of the facility of being able to talk to others with POTS/dysautonomia?

Does this mean I'm not allowed to talk about how POTS makes me feel, or about my life outside of POTS? One of the dangers when suffering from this type of illness is to get obsessed and end up talking about nothing else. I think this is far unhealthier than talking with other people about light hearted things that may technically be a little off topic.

Perhaps someone could clarify for me? I guess I'm just being a dumb english student again! no common sense, tut tut... :)

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Michelle,

since I like to learn from all of you and this forum is so very special to me because it made me and my doctors in the Netherlands understand POTS in an easy (for everybody to read) way, I want to compliment you and tell you that you're The cat's pajama's (this is what I learned from Emily!). You're making this forum safe for everybody and that's very much appreciated!

I'd like to know your opinion about the off topic conversations we have, because I can understand that it's not meant for that, but it also gives me sooo much joy (I think mostly because I'm homebound). I think for me the fun is, that we all understand eachother, which makes me feel very connected, and that everybody can join these conversations. I'm looking forward to hear your opinion which I will respect ofcourse!

Corina

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I guess I'm a little hesitant to post now too. I guess we all are. I know the post that brought about the clarified rules and guess I understand that, but I only saw one person that it apparently bothered and that person has been here longer than me and posted about 60 times to my almost 800. Now it appears everyone will be on eggshells and that's pretty disheartening. I love this site, obviously, but don't want to have to worry if I post about my son, or something crappy in my life, or even good movies I've seen, I'm going to get a slap on the wrist. I get enough of those from doctors and everyone else that thinks I'm a loony tune. Off the soapbox, morgan

Sorry Morgan, I had to edit your post. If you want to talk about another forum member with me please email me privately. -Michelle

Edited by Michelle Sawicki
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Ok, another two cents...whoever just posted that it is UNHEALTHY to dwell on our ANS 100% of the time, I TOO AGREE 1000%

part of the nature of severe chronic illness is developing other interests and keeping ourselves distracted with FUN stuff or to kvetch with others about struggles like with disability or shopping or showering (or sponge bathing to save energy like I do)

It's all the LITTLE things in life that many take for granted and does impact our illness. Like I have gradually tried to learn a bit about gardening. Even if I can only work for 3-5 minutes at a time...lie down 15 minutes and do some more. Did folks know what looking at pretty things such as flowers, helps to ELEVATE MOODS? proven scientific fact.

Even a simply thing like posting about a site full of pretty pictures can be a mini-mental vacation for those of us too ill to travel.

*sigh* I am afraid I have no clue what triggered this whole 'rule update' and hope somebody will spout off the EXACT specificities.... so we are all not forced to walk on eggshells for fear of offending somebody!

This is kind of sad but I am glad i am not alone in my paranoia about what to post about here....or not post about.

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Hi,

I don't like to get involved in difference of opinions because I save my energy for my survival. For me, this Forum is the best place in the world. It helps me keep my "sanity", feel useful (when I can help others) and get help. This forum is most of my social life. I like the relationship we have so far with each other because we are like a family. I would not want to loose that.

I am afraid that if the rules become too rigid we will loose the group spirit.

I have benefited from the help of others for going to NIH and Vanderbilt. If it was not for the support group I would have never found out that these places even exists. I asked Canadian doctors where I could go for research and nobody told me about the Research Centers. If not for the forum I would still be undiagnosed and desperate.

I sometimes answer to people's post by saying that I will pray for them. Other times I say that I will send positive thoughts. I know that we have different religion/belief system but I don't know how else I can show my POTS peers that I love them, care for them and wish that they will get better. I don't want to tell anybody which religion I belong because this is something very personal (as well as my age!). Personally I don't mind which religion anyone is when they tell me that they will pray for me. I appreciate the fact that I am in their thought.

There are good people in any religion, nation, ethnic group, etc.. Since this is an international forum, I think we have to open our mind and heart to people of other cultures. There is a difference between saying "I will pray for you" and actually writing a prayer down on the forum.

I like reading about other POTSers life and sharing their experience.

I hope that we, as a group, can pull through without loosing too many feathers. (Meaning: I hope that we will still have the same family culture and caring that we had before this all started and that we will feel at ease to post again).

I hope I did not offend anyone.

I love you all.

Ernie

Sorry Ernie....I had to edit your post. Please email me if you want to discuss another member. Thanks, Michelle

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Ernie

I am somewhat confused over the religion deal as some other sites have posted STRONG religous stuff that never got yanked and then when debate was brought up, it did get yanked.

Prosyletizing is one thing but SHOVING a specific relgion on somebody IS OFFENSIVE and I believe that was addressed here last week.

I am not the least bit into organized religion but respect those that are. Hence, my favorite way to tell somebody that I am thinking of them during a surgery or tough time has been to say "sending positive thoughts and generic prayers." THAT WAY, the person on the recieving end, can make the prayers fit THEIR situation w/o becoming offended. :) Just my token opine on that subject.

I think we should feel free to be of ANY religion OR even free of religion--that is what this country is about!-- AND STILL BENEFIT from a site based on ANS illness, sharing and enlightenment.

Peace to all

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I've had to edit and/or remove posts from this topic. Please be respectful of one another.

Just to make it clear to all, we've had to remove posts in the past due to the subject nature, which is why I am clarifying the forum rules. The clarifications did not result from one post or one person. I will explain my feelings on religion now, and I do encourage you to post your thoughts as well. Ultimately this forum belongs to all of us, and I want it to be a place you can all enjoy.

I feel it is fine for you to ask for prayers from others. This can be a great way to support each other. I also feel it is fine to ask other members if you can pray for them. I do not feel it is a wise idea to just send a prayer out to the forum members in general or to any particular member without asking. I say this because the other person may not be of your religion, or may be an athiest altogether. I will give you an example that will -hopefully- help you understand why I feel the way I do:

I have a friend who is a Jehovah's Witness. He would not be too happy with me if I started praying about how Jesus will protect his soul, and how he will one day walk the streets of gold and live in a mansion in heaven. He doesn't believe he has a soul, and he doesn't believe he will go to heaven. Saying these things to him in a prayer would surely make him feel uncomfortable, not comfort him. For reasons such as these, I feel we need to be careful about who we pray for and what we say in a prayer. You probably will not offend anyone by saying, "I am of such religion. May I pray for you?" and then praying if the person says it is okay. I am simply trying to be respectful to all members by setting these guidelines.

Please feel free to share your thoughts with me...

Michelle

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HELLO ALL,

Michelle ,

I've read thru various post here and must agree with the basic premise that the forum that You and All the other volunteers and various other people have provided ,not only for us , but for those who may just be surfing the net ; is a heartfelt , warm embrace ,library of knowledge & hope. I personally feel we should trust your judgement 'nuff said. Often knee jerk reaction seems right inorder to allieviate problems but often "bed rest" and a little time to cool may well go a long way to rewarding your efforts and healing all these " toes " - as it were. As for the superphluous info and threads ; I must agree if they are denoted prehaps that may or should be enough to cover one's sensibilities after all we are adults and choose to click - common sense should prevail. You do what you believe is right! That way we can all go on enjoying this priveledge that you continue to so graciously work , with all involved, to provide for us.

Kite 7

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Okay, I am going on as usual. If it is a problem, I will leave. I'm not the one who has to run this site, and try and take care of everything on top of being sick. And I don't envy Michelle or Nina. Every once in awhile glitch happens. We'll get over it and get on with business. I only respond with prayer to prayer requests and only ask for them when really needed. I don't care what your belief systems are, you are all VERY special to me and unique in your own unique ways. Suffice to say, you are ALL always in my thoughts....morgan

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I agree that we need t respect one anothe. This site is appropriate because we can just ignore people who get off topic, or who we can't "say something good about". I beliee faith is different from religion. So blessings to people is not religous. Regarding your friend, arent the seventh day adventistd the ones who come knocking at our doors trying to save us???????? I am a minister and believe that in a forum for support of a life altering illness we should respond to the need. Not proslethize. Perhaps we should send private e-mails. I am afraid to share my one year survival with this group now because it isn't necessarily pots related.

Thank you for all you do. Miriam :lol:

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Thanks Michelle for all you do to keep this forum useable, useful, and friendly.

Regarding religion, I agree with Michelle completely, and suspect that most of us do also. Personally, I think it is fine to make a broad statement about prayer?such as, ?I will pray for you? or ?please pray for me?, but it should be left at that, with no further discussion about religious belief. That kind of discussion can be found on other forums. I know that people who have found great comfort in their religious beliefs may want to share their experience with others, just like we want to share our other healing experiences, but this forum will not be as welcoming should that kind of discussion be allowed. POTS affects people of all different beliefs and cultures, as Ernie also points out.

Regarding off-topic discussions, I think this is such a hard issue. I do see the great value in sharing aspects of our lives that are not directly POTS-related. The Faces of DINET is one easy way to do that, but of course it is nice and even helpful to share our lives in other ways, too. But, I can also see how off-topic discussion can be a lot of work for Michelle, as she has to make ?calls? regarding what is off-topic but ?ok? and what is off-topic but not ?ok?. She has enough to do to keep this forum operational, and we want to make her job as easy as possible. It is also harder for people using the forum to find information they need if they have to wade through discussions not directly related to POTS.

My husband is a user of a similar forum on Volkswagens. I remember him telling me that they dealt with this same issue of ?off-topic? discussion. For awhile they had a separate section for off-topic discussion, but unfortunately it got very out of hand, and the moderator eliminated it. The moderator had to spend too much time deleting inflammatory statements, inappropriate web links, etc., and some users were upset or insulted, which is definitely not a goal of most informational forums. I guess my suggestion, if this is feasible, would be to have a trial period of an off-topic section, with strict rules?no politics, no religion, no inflammatory statements ? all the same rules we already abide by. But, discussions about films, books, personal (non-POTS) milestones, what I did today, etc. would be ok. I think such a section would serve many DINET users needs, if everyone using it can remember to abide by the rules. If not, it would have to be eliminated. Michelle?if such a section could be set up?could another volunteer moderate it?or would you have to?

Katherine

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guys, I don't think Michelle is saying that you can't share your life milestones--if having POTS had some effect on you making that milestone, then go ahead and share. Things like graduating from college or a certification of some kind are fine--others seeing that you've done that despite your illness can fill others with hope and happiness on your behalf

...things like finding a great doctor or having a good medical experience in managing your illness

...daily coping issues

...issues w/ family and friends that are affected by having a long term illness

etc.

I know Michelle is continuing to refine the definitions; the problem is that sometimes an issue is in a 'grey zone' and then Michelle, or I (with Michelle's consult) need to figure out what to do, whether or not to make a new rule, etc.

Forum veterans can attest to the frustrations of having others monopolize and/or use the forum as their personal soap box, personal physician, personal psychiatrist, personal daily novelist, etc. It's fine to post, to ask questions (even multiple questions when needed), but there is a line somewhere between reasonable use and overuse or abuse. Michelle is trying to make things clear enough that we don't have to relive old mistakes, mine included.

Nina

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I just wanted to say how happy I am that this site exsists. There are many forums out there that are not positve and "clichy" and left me feeling bad. I definetly understand why there needs to be some regulations to keep it such a positive place.

This site makes me feel great, suported, understood, and I look forward to checking in daily to see what is going on. I seem to always want to get here at some point in my day to read what is happening whether it is before I start my day, or before bed....

I have to say I usually enjoy every post written here, and the people on it.

You have done a great Job Michelle!

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Nina

It is the "grey" area exactly that I was refering to--I guess personal milestones aren't generally/necessarily in that grey area--but favorite movies, personalities, poems, etc are. I guess I was thinking that that kind of thing is still valuable for DINET users, and maybe could be allowed if it were in a different section. And maybe someone else could moderate it, if it was too time-consuming for you and Michelle? I don't know if that would work or not. And it would be a target for abuse, for people who would want to push the stated limits--but maybe it would be worth a try?

Katherine

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Just to explain a bit more on Nina's above post....if you have not had a post deleted or been contacted by Nina or myself regarding one of your posts than Nina is not referring to you, so please don't feel the need to apologize "just in case." 99% of the people here use the forum appropriately, and I have no qualms with 99% of the discussions here. It is the approximately 1% of inappropriate posts that I am trying to prevent, and I am trying to do this for your happiness as well as my own. Thank you to those who have let me know you enjoy the site.

Miriam, yes they are the ones who come knocking at your door. We may have some on the forum. And please feel free to share your one year survival. :)

Katherine, I have thought about an "off topic" area, but have not started one because of the reasons you mentioned in your post.

I am still working on my clarifications, but will post more soon.

Michelle

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michelle (and nina :)),

i just want to re-iterate something...that i have said probably a million times, but after this whole thing, thought...hey, you can never hear this enough...

YOU DO A GREAT JOB!

thank you for clarifying about things. i am sure it will take some of us a while to 'get back into the groove' and relax a bit again after what has happened, but in the end, i am sure that our community here will endure.

i cannot imagine the time and energy and stress that running such a forum involves...it really is amazing. so, thanks again.

thanks again, as always! i don't want us to have to have a '2 second delay' or whatever it is that the tv networks did after the janet jackson fiasco!

guess what? i'm off for DINNER! the old dancing light is peeping through...

later alligators,

emily

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