posted
So much controversy (did I spell that right?) on this site. I found this sight looking for support and friends who would know what I was going through.
I thought I had, but reading the last few days truly makes me wonder and now I think I'm better off just doing my own research and reading here occasionally and being really choosy as to what I do read.
It seems all of us would understand how lyme or whatever is affecting our bodies and brains and emotions could cause us to say, write, feel, express, whatever at the moment.
And so many come here expecting to be understood when everyone around us, those closest to us can't understand and can't deal with our emotions and frustrations.
I don't even know if I have lyme, and maybe others here aren't sure either. But each of us here are here because we either have been diagnosed with lyme or we have the symptoms and are looking for some answers to explain why our lives have been interrupted.
My husband and my friends don't understand, at times "I" don't understand. And now I don't understand why people who are looking for support, expressing frustration, sad, lonely, depressed, emotional, angry, helpless, _________, (fill in the blank with a thousand other emotions that apply here)
Anyway, you get the picture, how can any person be "banned" from a support group? I'm not talking about anyone individually. I'm new here. I have no idea who "cavey" is/was? So I am not writing her to support her/him or anyone else who has ever been "banned". It doesn't matter who they are, really, does it? It just saddens me to read about it. And I'm sad enough now without anymore sadness.
"Cavey" could just be a code name for thousands of persons who have lyme, or MS, or lupus, or depression, or any one of thousands of "invisible" diseases that robs your life. That no one can see around you. That you suffer with alone.
A disease that takes away your ability to be "YOU". That keeps you from being a nurse, a mother, a father, a wife, husband, friends, __________ (again, fill in the blank)
And you seek a place of understanding in the vast world of cyberspace, with those who are alone in their mental and physical pain like you. But how can you feel free to be yourself and open up and share yourself (which is why you are here in the first place) if you have to worry that you could be "banned" if you write the wrong word that day.
We all know we will have days that we will say, write, expess, feel, things we might not feel tomorrow. Everyone here should be able to understand and not take it personally, but just realize it is the lyme talking. Or whatever disease is plaging our bodies. Give each other a break.
Be a friend, send a hug, send a prayer, send love and understanding when someone needs it most.
Remember that the thousands of "cavey's" out there in the world are just people like you. Someone with an invisible disease that has taken the life they knew and destroyed it. Someone who is angry, hurt, frustrated, depressed, lonely, sad, in pain, and surrounded by loved ones in their life who can't truly understand.
Sorry this is so long, it just hurts me to imagine that I'm afraid to say what I really feel sometimes. I found this site thinking that I had found a place to share with those who would truly understand. Maybe my opinions today will result in me being "banned", who knows. Is it wrong to support those who have been "banned" before?
What if I have a bad, emotional day and just want to vent? I can't depend on the "powers that be" to allow that? Granted, as I said, I am new here and have no idea who has been banned before or what the reasons were, so I guess that does not give me the right to say anything. But I believe that here, we should be able to share without the fear of being put in the corner like children.
We are all adults and capable of deciding what to believe and what to dismiss. Some things I have read here, I choose to dismiss, while others I find great support in. You learn quickly whose postings will provide the most support and learn to search for those.
Those that have emotional days and need to vent or have their own opinions, it's ok. It's no different that having a spat with a friend or loved one. You understand they are just having a bad day and don't love them any less, right? We should do that for those here.
Ok, I think I have rambled on long enough. I'm bad at that. And I'm actually having one of my better "mental fog" days, so I tend to be even more wordy than normal, sorry.
I have much respect for each of you suffering, whether you have diagnosed lyme disease, any other "invisible disease" or you are like me, and not sure but still searching for an answer for all the symptoms.
I do not personally know any of you, but I share your emotions and frustration and I can be a friend if you allow it.
I am afterall, just another "cavey" in the world. Aren't we all? All my love, Tamera
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
That was very well put.
I'll be your friend.
I miss Cavey.
Hope that the tone changes with the upcoming season to one of hope and miracles.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I think if you ask alot of the people who have been on the board along time
that they would agree with me that every so often things go a little wacky and chaotic ...
I dont know if it is how they stars / planets align or what...
this time it seems worse but I think Lou B (a long time moderator) is still recovering and not acting as monitor at this time...
maybe this is the difference.
I miss cave too. She was here before me and I always appriciated her wit and willingness to give someone her opinion whether based on expereince or researching articles.
Always come here to vent Tamera. Please dont worry about being banned. We have enough junk to deal with being sick.
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Hi Tamera,
Don't worry, this is a good safe place to vent and be human. It's just not a good place to be blatantly hurtful.
From what I've observed, the moderators on lymenet try not to allow blatantly hurtful behavior, which I consider a good thing for people in a conversation about trying to heal.
Any supportive and healthy support group has rules about being nice to each other.
Vent away. As long as you don't attack, ridicule, or force your opinions on other members, you'll find open arms here.
"Of all you've learned here, remember this the best, don't hurt each other and clean up your mess." from the Kindergarten Wall
Glad you posted.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"Anyway, you get the picture, how can any person be "banned" from a support group?"
Everyone here is a guest in the LymeNet home.
And just like anywhere else, if you don't follow the rules and act appropriately, you can be tossed.
The way the rules read, they don't even need to give a reason for banning someone.
It's their home which has been provided for all to use... and it is free.
Everyone who posts must agree to abiding by the rules. Sometimes warnings are sent by the moderators... and if the bad behavior or problems continue, the person is then booted.
Here are some of the rules we have all agreed to follow.
``````````````````````````````````````````````
"Users shall not post or transmit through the LymeNet System any material which violates or infringes in any way upon the rights of others, which is unlawful, threatening, abusive, hateful, harassing, knowingly false, defamatory, sexual oriented, invasive of privacy or publicity rights, vulgar, obscene, profane, or otherwise objectionable, which encourages conduct that would constitute a criminal offense, give rise to civil liability or otherwise violate any law, or which, without LymeNet's express prior approval, contains advertising or any solicitation with respect to products or services.
Any conduct by a user that in LymeNet's discretion restricts or inhibits any other user from using or enjoying the LymeNet System Interactive will not be permitted. Users shall not use the LymeNet System to advertise or perform any commercial solicitation."
posted
Tamera, That was really well put. I appreciated what you wrote....very much!
I agree that you are safe to express yourself here. Just read the rule Tinny posted and you'll do fine.
There are a few people here who have been battling each other for a long time. Sometimes it gets out of hand. Sad to see.
I hate conflict so I "scroll on by" when it gets nasty....or better yet...don't read the offending threads.
I hope you stay, Tamera....We would love to have you among us.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Tamera, Tamera!!!
And to think, we hunted you DOWN, girlfriend, for fear you'd gotten AWAY!!! Hah!
It IS sad.
Even in this placid little thread, I see such harsh words of judgment. Not for you, mind you.
Judgment is pronounced upon someone who tried to protect people who come here looking for help. People who are confused, overwhelmed, and wondering what to do next. The "offender" rarely did more than ask for proof, or present conflicting information, or even question information presented in an effort to protect us from ourselves.
The "tone" of the forum has changed considerably since Cave was banned. The feigned ultra-sensitivity of the some of our posters is escalating. On the front page recently a poster went into a complete tizzy, threatening to leave LymeNet because of an imagined slight that couldn't even be discerned.
However, as has been pointed out, it IS the moderators' forum and they can certainly do as they wish.
Bring back Cave!!
But in the meantime, hang in there. Those of us who stay do so because of people like YOU.
Michelle
[ 01. November 2007, 11:40 PM: Message edited by: Michelle M ]
Posts: 3193 | From Northern California | Registered: Apr 2005
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Cobweb
Unregistered
posted
I sent pm.
Meanwhile-just know you are free to express how you feel about yourself and your situation.
quote:Originally posted by Michelle M: On the front page recently a poster went into a complete tizzy, threatening to leave LymeNet because a scientific point of view on ozone generators was presented on a thread. This is little different than Cave's so-called "offenses."
What did I miss on that thread???
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Tamera, Not to worry,,,YOU dont post anything that even comes close to being banned. It saddens me too,,,but its not my call.
I dont know exactly what caused all this either,,,I came upon the scene of the accident too late.
The saddest part is there are ALOT of posters NOW absent because of it!! We ARE all just family here.
We lose ALOT of knowledge and support when we lose just one of us!!
Let us all band together,for alone we CANT survive!!
It helps not to purposefully push the envelope.. OR the other golden rule,,,IF you cant say something nice and supportive,,dont say it!!
Altho agreeing to disagree,,,is a right should be protected,,,respectfully however!!
If someone has hurtful words to say,,,best is to 'think' about it awhile and let it simmer a bit!!!
Tamera,were you able to get further info on second generation orange thing??? I havent had time to research that yet!! Was wanting to tho.
NO FEAR,,,your not even "CLOSE" to the ban offenses yet!!somewhat--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by Lymetoo:
quote:
What did I miss on that thread???
I had the wrong thread. I PM'd you the right thread. By the way, clean out your mailbox!!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
posted
Thanks everyone...I just know we are all in the same boat...and we can either choose to help each survive this horrible storm or watch each other drown.
Being a nurse (even if I can't practice in the field I love right now) I can not, will not, could not, EVER sit by and watch anyone drown.
Even someone who had hurt me or the one who had thrown me overboard.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by Tamera: I can not, will not, could not, EVER sit by and watch anyone drown.
Even someone who had hurt me or the one who had thrown me overboard.
Wonderful words.
I may steal them.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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bettyg
Unregistered
posted
tamera, WOW! very powerful, succinct wrting from the heart; well done!
michelle, please email me also the thread you are referring to ok! thx
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Its simple lymenet has rules . If we break them you get your desert.
So everybody sick,not sick remember to obey them.
I know for a fact I have said things in the past that I should have maybe not have. This disease dosent care who you are and when we slip up more than once well maybe we should get a cool down period.???
And I liked Cavey!!!still do I sent a pm but she never got it or didnt respond?
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Tree, I am not attacking you or your writing, but what you wrote was a little confusing and a bit funny. Anything that makes me smile is greatly appreciated.
You said: Its simple lymenet has rules . If we break them you get your desert. [end quote]
So, if we break the rules, you suffer receiving a load of sand dumped on your driveway. (Maybe with one small cactus.)
Then again, if we broke rules and you got your dessert, that sounds like you would benefit with, say, a large banana split from our errors.
Tree, you are the best!
As for all the controversy here, I am with those who picture this site as a house to which we enter knowing we must obey certain rules of courtesy and cooperation.
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
treepatrol - If you sent cave a pm since she has been banned she CAN'T respond because her acess to the site in its entirity (including pms) has been taken.
cootiegirl
Frequent Contributor (1K+ posts)
Member # 3216
posted
Hey Tamera. Nice to meet you....It's a shame that a message board has to add additional worries to our lives. As you can see, I'm an old timer around here too. Drama tends to wax and wane around here, in part because of the lyme brains that we all are. I have never seen a place that so much misunderstanding...that isn't meant as an insult but it is a reality - our lyme brains sometimes just misconstrue information, the rage gets us typing nasty, etc. So emotions run high because of feeling sick and tired, of the beaurocratic baloney that comes with this disease, and oh, did I mention, because of our lyme brains....
I have seen a lot of baloney go on around here, and it got to a point where I simply left for a couple of years - didn't like what I saw or how problems were handled. There are a limited number of moderators. It's basically Jenifer and the elusive Toby (I've yet to figure out if Toby really exists LOL). Until you have walked a mile in a moderator's shoes (been there, done that), it is a tough job. I have no clue what transpired with Cave, but I have seen bannings happen here that IMO, are just plain bizarre. Her's is not the first and probably won't be the last unfortunately. And yes, while there are rules that one must follow to 'behave' around here, these are not necessarily followed with any degree of consistency....Some sites simply don't like a differing opinion shared and will 'penalize' a member for expressing that...again, don't really know what happened here, but know that it does happen to keep order.
There were problems when Lou was here, so he really isn't the saviour or the magic bullet to stop the problems or to be the master of all moderators. While I have found value in this website, simply take it for what it is worth. It can be a very good source of information and support but it is what it is.
So welcome,friend. Makes friends and talk with them, here and in cyber land. You will get thru this illness.... cootiegirl
Posts: 1728 | From New York State | Registered: Oct 2002
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