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Author Topic: What do we really WANT from the Forums?  (Read 5905 times)

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Offline Sdgirl

  • Member
  • Posts: 247
What do we really WANT from the Forums?
« on: August 01, 2006, 10:01:43 PM »
Yes, I know, there have been threads started like this before, why should mine be so different?

Maybe it won’t be, but I have to let it out.

The tides of the forums have changed, and I am not referring to the “new format” that everyone laments about, saying the old forums were better.

The truth is, there is no difference from the old to the new with the exception of the people.  And it’s the people that I am here to talk about.  There is no one in particular, although we all know that if given the opportunity, we could all name names, I am not going to go there.

What it is is the attitude.  The attitude of everyone.  The constant bickering, biting back, snide remarks an “flame baiters” who are allowed to remain with no more than a slap of the ruler on their hand.  The outing of bad relationships, friendships and spewing of venom.

It’s the responses to the threads were people lose site of the original post and end up making it all about them, instead of really reading what the original poster wrote.  We want SO MUCH to be validated and for some reason, it appears to me at least that we turn to this site to find that validation.

Suffice to say, it’s no longer a “warm and fuzzy” place to come to.  We preach “family” like Sister Sledge sings when on stage, but we put the ‘FUN” in DYS-FUN-CTIONAL. 

I’m at a loss.  I love some many of you on here and have grown to know many outside of this medium.  I LOVE to read what Jonathan, Bailey and Matty write because I know they don’t censor.  They shoot from the hip and tell it like it is, but when they do, they get bit in the ass as if what they were saying wasn’t the truth.  Truth is, it’s just not sugar coated like everyone wants it to be, IT'S REAL.  They haven’t changed, the people have.

Let’s be clear, this place is addicting.  I feel like a damn crack addict when I haven’t read the forums in a day and if it has been more than a few days, I am totally out of the loop….but not so much anymore.  I wish I could suggest ways to change it, make it better, pinpoint the exact reason, but I can’t.  I just know it’s different.

I realize that I take the risk of getting beaten over the coals for this thread, but I too am fearless and I would hope that after reading this, you will see that it is not meant to cause “drama” but to make everyone think about “what we really want these forums to be?” 

I realize it can not always be “happy-happy-joy-joy” but to quote Jonathan “I call bullshit”

I ask all of you to really give it some thought……………..”What do we really want from the Forums?”

Lisa
"Our deepest fear is not that we are inadequate.  Our deepest fear is that we are powerful beyond measure.  It is our light, not our darkness that most frightens us.  We ask ourselves.."Who am I to be brilliant, gorgeous, talented, fabulous?  Actually, who are you not to be?"

Offline HIVworker

  • Member
  • Posts: 918
  • HIV researcher
Re: What do we really WANT from the Forums?
« Reply #1 on: August 01, 2006, 10:12:11 PM »
No shit SDgirl, I've left more times than most. And here I am.

However, I have to comment from other forums I am on. Even with the advent of smilies, it is hard to read the feeling behind the written word. I've seen all sorts of fights on all sorts of forums. Yes, it is a support forum, yes people can get bitter. We all hail from different viewpoints but if needed, the support appears to be there...case in point http://forums.poz.com/index.php?topic=2406.0. Arguments are going to happen and maybe we all need to just get thicker skin and ride over the comment that someone made to bait us?

I'll start on that tomorrow shall I?

R
« Last Edit: August 01, 2006, 10:13:45 PM by HIVworker »
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline David_CA

  • Member
  • Posts: 3,246
  • Joined: March 2006
Re: What do we really WANT from the Forums?
« Reply #2 on: August 01, 2006, 10:31:13 PM »
There is a lot of support on these forums.  There's a lot of information, too.  What really bothers me is when somebody whose opinions and posts I come to respect snaps back with a really bitchy reply to another member.  Often, that other member didn't mean anything other than to make a point, not direct anything personal towards anybody. 

I wish that we'd act a little more like we were talking in person where such behavior wouldn't go over at all.  Maybe we can all act a little more like adults than adolescents bickering and calling each other names.  If one feels the need to write a biting response, type it out and read it.  Is this something that you would want the general public to associate with you?  Is it appropriate for a support forum dealing with HIV & AIDS?  Who will benefit from this response?  If the only one that will benefit is the author, click the 'back' button and move on to the next message without posting that response.  I think most of us could just be a little bit nicer to each other; imagine how much better these forums would be.

David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline livingpositively

  • Member
  • Posts: 369
Re: What do we really WANT from the Forums?
« Reply #3 on: August 01, 2006, 10:33:44 PM »
What do I want?  Hmmmm
Well, first I would have to agree with you that the forums have become a different place, even in the four months that I’ve been here.  It has nothing to do with the new format.  It has nothing to do with the “family” getting to big because so many “newbies” are invading our little secret corner of the WWW.  It does, as you said, have to do with the attitudes and exchanges that have taken place recently.

So, back to the question…what do I want?  I want a place to come where I can share my fears, my challenges, triumphs and losses.  I want a place where I can glean information – valuable information – from those that have traveled this road ahead of me.  Why do I need to reinvent the wheel?  I don’t need or want it to be ALL about lab numbers.  Support goes way beyond that.  But since I’m pretty new to this, I would like to think that if some lab numbers freak me out or I have other questions about them, that I can get the answers and the “It’ll be ok” or “This is/was my experience” things (and thus far, I have).
For example, Eric’s thread about being “outed” at work.  I think that is what these forums are about. 

I realize that not everyone is going to love each other or agree on every issue.  That would be boring, but it is equally boring to come in here wondering what the latest soap opera is or who hurt whose feelings.  Perhaps the nationwide heatwave is affecting people.  I don’t know.  But it definitely seems like the claws have been brought out in A LOT of threads.  I’m always up for a good discussion or debate, but one that can remain civil and might actually teach somebody something in the process seems much more productive.  We need to realize also that this is a global community (how many countries are represented in OzPaul’s “where are you” thread?)  Laws, ideals, customs, morals, values etc are different everywhere.  Hell, even in the U.S. there are vast differences from one region to another, or even from one state to another.  It’s all about respect.


Shane
4/6/07   CD4 450, % 23, No VL
2/19/07 CD4 487, % 26, VL 47,500
1/4/07   CD4 357, % 27, No VL
10/3/06 CD4 500, % 26, VL 18,000
7/6/06   CD4 530, % 29, VL 83,800
4/6/06   CD4 555, % 28, VL 13,000

Offline jack

  • Member
  • Posts: 1,578
  • fomerly the loser known as Jake
Re: What do we really WANT from the Forums?
« Reply #4 on: August 01, 2006, 10:36:06 PM »
have you tried my 12 step program for aidsmeds? It didn't work for me. These are the only people I know who are hiv+.

this place is a slice of the real world and people will argue. I sort of enjoy a little drama every now and then.

Offline Teresa

  • Member
  • Posts: 1,753
Re: What do we really WANT from the Forums?
« Reply #5 on: August 01, 2006, 10:37:50 PM »
What do I want from the forums?

A place where I can come and get answers to my questions about hubbys HIV.

A place where if I need to vent I can and people will understand and let me vent.

A place where if I'm scared people will help me over my fears.

A place where maybe I can make a few new friends and sometimes share a laugh so I know its possible that while I'm getting thru this there is still laughter.

Have i gotten all that?

For the most part yes.


Teresa
Hubby HIV+ 5/5/06
CD4:320
  %: 26.7
 VL: <20
Atripla (started it 8/24/06)
 

Offline zephyr

  • Member
  • Posts: 459
    • Zephyr L.T.N.P. Foundation, Inc.
Re: What do we really WANT from the Forums?
« Reply #6 on: August 01, 2006, 10:58:05 PM »
Hi Lisa,

There is no question that the past few months on our Forums have been tumultuous, with highs and lows for all to see and react to.

Growing pains seems to be an explanation, but not quite 100 percent. I really rather believe that we are a microcosm of the larger world, with the different personalities and opinions that comprise it. We are a family, yes, with the same levels of dysfunction that all families experience. It's just the way it is.

How we choose to react to the 'dysfunction' is the key, I think. I can only speak for myself when I say that I try my best to remain calm, supportive, and encouraging, offering understanding to those who are struggling with this virus, recognizing that the journey is different for each of us.

I have grown to love this site so much since I joined in September last year. The sense of community I felt was like nothing else...the comaraderie, the collective embrace of those who have walked the same path as me, and the incredible personal stories of survival from so many........unique, amazing and touching all at the same time.

It was upon this site that I first developed relationships with other HIV+ women, which, after 13 years, was astonishing and freeing at the same time!
Comforting, caring arms reaching out across the screen, to soothe those fears of "AM I THE ONLY ONE?", arms of men and women whose faces I longed to see for real.

I hear what you are saying, honey, and I understand your feelings. But, as with any family we need to remember a very important thing: Forgiveness is a powerful thing, and tolerance is, too.

Just my two cents worth...would love to write more, but I have a drained mind today.

I am glad you have joined us...your spirit is so bright and strong.

With love,

Zephyr :-*

"It is character that communicates most eloquently."

Offline AlanBama

  • Member
  • Posts: 3,616
  • Alabama: the 'other' 3rd World Country!
Re: What do we really WANT from the Forums?
« Reply #7 on: August 01, 2006, 11:01:21 PM »
Lisa,

I know exactly what you are saying honey.  I had this same conversation with a dear forum friend earlier this evening.  I also know what you mean about being 'addicted'....I have to have my 'fix' of this place, and I actually find myself rushing to do my work so I can get to a breaking point and read in the forums.

Here's some food for thought:  sometimes respected members of the forum convey more with their silence than they do with words....I will sometimes read a post, and have a thought about it, but purposely not post a response, just letting myself 'study on it' awhile (that's a Southern thang).

David is right, a little maturity and respect for each other can go a long way.  I need this place, it helps me maintain my sanity (or what's left of it).   I'm not going to let one or two spoil it for me.  Sure I've had my feelings hurt before, I think most of us who regularly post have.   You just have to 'grow a thicker hide' as my daddy used to say.

I wonder if some people here know how much weight their words carry?   I devour every post that Jonathan writes, as well as those of Tim, Joe, Rocky, Jan, Trish, Matty, Ann, Andy, Lis, Sweetieweasel, Zephie...we have some incredibly smart people here.  I feel blessed to be in such company, and honored to call these people my friends (that includes you too Lisa!). 

If I was wealthy (in $$$) I would gladly finance a novel by each of those I mentioned above, and some other people too.   It would make great bedtime reading for me!   But, I'm poor.  So I'll just have to be content with reading what they write here.   I've been an avid reader since 3rd grade, and I would put the words of Jonathan and Matty right up there as some of the best I have ever had the pleasure to read.  Matty can always make me laugh, even on an "AIDS day".  He is incredibly clever and quite a wordsman.

We've experienced some bumpy times lately.  Just hang on honey, it will get better.  We may be 'dysfunctional' but the important thing is that we ARE a family.  In every sense of the word.

with love,

Alan (the sentimental old fool)

edited to add:  I agree with Zephie, you really are a bright spirit here Lisa!  You add a lot to the forums.
« Last Edit: August 01, 2006, 11:47:05 PM by AlanBama »
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Eldon

  • Member
  • Posts: 2,664
Re: What do we really WANT from the Forums?
« Reply #8 on: August 01, 2006, 11:15:05 PM »
Hello Lisa it is Eldon. I do agree that the forums has changed since I've been a member over the past months. As Shane stated it:

"So, back to the question…what do I want?  I want a place to come where I can share my fears, my challenges, triumphs and losses.  I want a place where I can glean information – valuable information – from those that have traveled this road ahead of me.  Why do I need to reinvent the wheel?  I don’t need or want it to be ALL about lab numbers.  Support goes way beyond that.  But since I’m pretty new to this, I would like to think that if some lab numbers freak me out or I have other questions about them, that I can get the answers and the “It’ll be ok” or “This is/was my experience” things (and thus far, I have)."

As with any family, we all need to support each other and as Zephie said with paitence and tolerence.

Offline Life

  • Member
  • Posts: 2,388
  • Member 2005
Re: What do we really WANT from the Forums?
« Reply #9 on: August 01, 2006, 11:42:14 PM »
Never saw one episode.... ;D

Making your way in the world today takes everything you've got.
Taking a break from all your worries, sure would help a lot.

Wouldn't you like to get away?

Sometimes you want to go

Where everybody knows your name,
and they're always glad you came.
You wanna be where you can see,
our troubles are all the same
You wanna be where everybody knows
Your name.

You wanna go where people know,
people are all the same,
You wanna go where everybody knows
your name.


Offline David_CA

  • Member
  • Posts: 3,246
  • Joined: March 2006
Re: What do we really WANT from the Forums?
« Reply #10 on: August 02, 2006, 06:30:24 AM »
Instead of editing my previous reply, I thought I'd just post another reply. 

Occasionally, members post what some call 'flame bait'.  Why is it that these same members are the same ones that get caught up in these threads?  I'm sure that many of us can name about 4 to 5 members that we can expect to respond to these posts.  Their first post is to call out the original poster as posting 'flame bait.'  Then, these members continue to post message after message arguing, debating, trying to out smart, etc the original poster.  Come on, guys (and gals), if you don't like a thread and it isn't directed at you simply move on.  I'm as argumentative and opinionated as anybody... and more than most, but I just remember that 1) I'm not obligated to reply to anybody and 2) if I'm going to show my ass, it won't be by looking like a fool on a forum!   ;)

When I was in college way back in the 80's, I had a bumper sticker on my car.  Here's what it looked like: (see below... I couldn't get the pic here)

I think it applies here, and to everyday life, and not just to environmental issues.

David

[attachment deleted by admin]
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: What do we really WANT from the Forums?
« Reply #11 on: August 02, 2006, 07:06:06 AM »
Plus ca change, plus c’est la meme chose.

That's a fancy way of saying that the more things change, the more they stay the same and it is very true of these forums.

I've been a member here since 2001. I've seen two forum software changes. I've seen people come and go and come back again. I've seen ups and downs, ins and outs, cat fights, hissy fits, joy, support, caring and plenty of love.

When I look back over the past five years, I see a place that provides an invaluable service first and foremost. Many of us come here torn and broken, our lives in tatters. I've lost count of the people I've watched grow and blossom and turn their once broken lives around. That process never stops, no matter what the hissy-fit du jour happens to be.

This place is in a constant state of flux and if it weren't so dynamic, we'd all soon get bored. Change doesn't have to be a bad thing, especially when the foundation stays the same.

Since we will never stop this place from changing, at least on a superficial level, my answer is this:

Be the change you wish to see.*

Ann
*(with thanks to Mr Gandhi)

Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline OzPaul

  • Member
  • Posts: 410
  • a very blessed 29 year ltnp
Re: What do we really WANT from the Forums?
« Reply #12 on: August 02, 2006, 07:11:54 AM »
Hi Lisa

Thanks so much for this thread. I've read many good, thoughtful responses so far and feel much the same as others.

The forums are like a family to me, I mean ARE a family to me. As within my own family sometimes we don't/won't/can't get along. I think that for the most part we honor one another in spirit, deed and words. Not always.

Shane has referred to my thread 'where do you live' country/state'. Well, what I would like to see are MORE voices from all over. On that thread I learned that we have active members from Zimbabwe, South Africa, Germany, Thailand, Spain, England, Wales, Ireland, The Netherlands, New Zealand, Australia, Canada, The USA and the Isle of Mann ( I may have missed one or two). We are global and like countries we may not always get along,  but I think we try.
So yes please more members, more voices, more countries. I do find it all a bit daunting  sometimes but I too am a forum addict and I'll continue to stick by my family no matter how harried it may become.

All the best
Paul
« Last Edit: August 02, 2006, 07:40:57 AM by OzPaul »

Offline kcmetroman

  • Member
  • Posts: 567
Re: What do we really WANT from the Forums?
« Reply #13 on: August 02, 2006, 08:13:31 AM »
I want just $1.00, so I can give you $.99

Love

John

Offline Val

  • Member
  • Posts: 938
  • Praxitèles -- Satyre au repos
Re: What do we really WANT from the Forums?
« Reply #14 on: August 02, 2006, 08:36:51 AM »
Hey, Lisa!
This is one of the few times that I will pluck up courage  and  venture around and post on the " Living with..." forum. I don't do that as much as I did in the past, and I don't do it as often as I would like to.  Why?  So many motives, but let us just say, for now, that I don't feel at ease  around here any longer and never  relish on   the fact that I have to weigh very carefully my wording so such and such will not report me to the Goderators; so that such and such will not take "offense" and start an endless drama soap opera; or, still, tell me what I should or should not be doing. I made a rule that I apply to myself first and foremost in these forums:
 --- 1-"I don't like something that is being affirmed, I pass on to something else!"
---2- "I don't agree with someone on whatever subject, I may politely speak out my mind!"
--- 3-"I don't like some people's temperament, mien,orientation, stand and/or resoluteness, I steer clear of their way!" And last but not least,
---4-"I do acquiesce in being criticized by any member of the forums, as long as it is done in a civilized and edifying manner!"  And ,  I have a hard time comprehending people who do not accept a little disapproval from their peers every now and then.
I do like a little drama from time to time, but I am a very joyous person.  Humour is a high priority on my list!
So, answering your question:  "What do I want from these forums?" Not much,  really.  However, I would be more than satisfied if I could help someone in any way whatsoever in the fight against this virus.  If I can bring a little smile to the face of someone who is suffering because of the illness we all have, my day will be complete. And, if along the way I do make some faux pas and bring the opposite of what is intended, I'd like to be reminded of that...in a unruffled, civilized manner! Please!

Val
___
___
P.S.  I read and enjoy most of your posts! ;)
Arthus Bertrand
http://www.yannarthusbertrand.com/yann2/affichage.php?reference=TVDC%20YABFR084&pais=France
Ali Mahdavi
http://asyoudesireme.online.fr/index.htm
Richard de Chazal
http://www.richarddechazal.com/
Daniel Nassoy
http://www.danielnassoy.com/pages/galeries_portraits_2.html
Photography:
The word comes from the Greek words φως phos ("light"), and γραφίς graphis ("stylus", "paintbrush") or γραφή graphê, together meaning "drawing with light" or "representation by means of lines".

Offline Biggums

  • Member
  • Posts: 199
Re: What do we really WANT from the Forums?
« Reply #15 on: August 02, 2006, 08:56:51 AM »
Hi Lisa,

Thanks for your post.  I have thought about this as well and why I am almost gun shy about coming back in here at times.  When I first started here I was scared as my honey had recently been diagnosed and there were all kinds of questions and concerns that I had.  Over time, I felt I had developed a good relationship with several members and really appreciated the advice and info I was receiving and hoped that I was able to offer the same at times.

The thing that bothers me is that at times people in here will express their faith and how their religious beliefs help them through the tough times.  And almost always it seems that someone without these beliefs, which is their right to not believe in God or a supreme power or whatever you wish to call it, feel the need to let these individuals know that their faith is groundless and basically that they are an idiot for believing in such things.  A couple of those members are listed above, held out as the role models for the rest of us too.

Faith is a deeply personal issue.  Why some feel the need to lambast those with it I do not understand.  It seems it would be far better to just not respond rather than attack someone on this issue.  I can respect those who do not believe and look at them as fellow board members who are struggling with issues in life as I do.  Why can't they do the same?  If someone is getting through HIV by a deep seated love of broccoli, who am I to come along and spear them and say they are foolish?  If it works for you then fine, I support you.  I don't need to tell you how silly you are or how I think less of you for your beliefs.

I sometimes wish that there was a separate forum for this issue, for people to discuss their faith and how it relates to their disease without the fear of some flame being thrown at them.

I am still hanging around but I am do not feel the freedome to be open here that I once did and for that I am sad.  For those who love to trash others faiths and beliefs, you might want to just consider if you are doing more damage than good.
44 year old gay man .......just broke up with the only man I've ever really loved.

You can love completely without complete understanding.

Offline Moffie65

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Re: What do we really WANT from the Forums?
« Reply #16 on: August 02, 2006, 09:27:13 AM »
My Darlin' Lisa,

Thanks so much for posting this very thoughtful thread.

Wow, I feel like an old timer here, even though it has only been since Feb of 04.  When reviewing this thread, I was literally engulfed with all the emotions that I have been through since joining up with all you fine people here.  I have been crucified, scoffed at, prodded, poked, hailed, encouraged, laughed at and a plethora of other emotions that can make the human experience exciting, and at the same time, sometimes scary.  I have posted just about every emotional plea for sanity that I can muster, and at the same time, have also tried to always remain encouraging, and positive.

Sometimes, something will really grate my ass, and then I, not unlike Matty or Jonathan, will post some very raw feelings that I might have about a particular post that I read here.  Usually it is someone hacking away at someone else, or some person that hasn't read something I posted well at all, and then I go off.  Like David above, I am very opinionated in many of the things I have learned along life's pathway, and when there is something that I do know well, I let go and type just what I want to say.  In the beginning, I was really put off by some of the responses, and unfortunately, I have also typed some things here I wish I hadn't, but in the end, we all end up making it through and hopefully we all learn from the experience.

Now to your question, What Do I Want From The Forums.

To answer honestly, Nothing.  I don't come here looking to fill any "Wants", but instead come here to share.  I guess in the end, I do "want", and that is a place that is safe to come and share.  What I often find here is that when I am going through a time of particular need, I have to be careful what my expectations are of AIDSmeds.com.  If I come here with the expectation that people are going to be kind, caring and attentive; I am usually disappointed.  Why the "F" did I say that?  Because I came here with the "expectation" that what "I" needed was going to be the "theme" of the day and that perfect strangers with very complex lives will stop their world and pay attention to "MY" needs.  That is one very unreasonable expectation.  What almost always happens, is that somewhere on the planet, someone is there to help assuage my fears and needs at the time.  I think that is absolutely amazing, and it always surprises me that anyone on the planet cares a twit about what I am saying or feeling.  

Over time, we establish relationships with people here who will become fast friends, and when that happens, it is like a nice slice of rich cheesecake, at the end of the meal.  Otherwise, we need to remember that many of the members here are not necessarily feeling all that well, and sometimes they come off sounding very aggressive, or angry.  Yes they might be assholes in real life, and yes, they might be demanding of our attention, but in the end, we have to be very careful and gentle, because we never know what thought train might just send them over the edge.

Recently I have become aware that many of the members here are NOT who they proport to be, and when we are participating here, we have to be cognizant of the fact that some of the members haven't been honest with themselves, or the world for the better part of their whole lives.  People of an honest nature are always going to be hornswaggled by these kind of people, because we unfortunately always think people are going to be kind and caring like ourselves.  This is not the case, and these very few people can destroy any semblance of proper behavior that we might have aspired to, in one post.

So, Lisa, what do all these keystrokes mean?  Simply that we must develop a small crust, and keep ourselves insulated from those that would do us and the forums harm.  Lately, especially this year, I have been tempted on more than one occasion, to leave AM behind and just move on, but then I will check in and read a post that can only be answered by some knowledge that I have stored in my brain, and then I am back again in full swing.  I have thought long and hard about this and the one conclusion that I have come to is that "I will always get out of the Forums, what I contribute".  So if you are feeling down today, and you don't particularly like what is coming across the page, think really hard and try to come up with a thread that is positive and uplifting, and at the same time, help people to have a good day and life.  I find this really works, and when things around here start to get a little thick, just wait a few days, and things will cycle again and come around, but only if "good" people stay and contribute enough good stuff to outweigh the negative.  

OK, Poke me with a fork, I'm done.

In Love.

P.S.  I love doing spell check and having it say, "No Errors"
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline ademas

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Re: What do we really WANT from the Forums?
« Reply #17 on: August 02, 2006, 09:28:36 AM »
I'm just here to find a wealthy, HIV+ husband.
It's not going so well.

Aside from that...it's not much different than any other forum I've visited regularly.  People laugh, share, argue, bitch, complain, inspire, reach out...and the planet spins, and the world goes 'round and 'round.

Another day in paradise.

xox



Offline Alain

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Re: What do we really WANT from the Forums?
« Reply #18 on: August 02, 2006, 10:18:31 AM »
.
« Last Edit: November 03, 2006, 05:43:49 PM by cowandalehouse »

Offline Trish

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Re: What do we really WANT from the Forums?
« Reply #19 on: August 02, 2006, 11:02:11 AM »
Good question Lisa, and I'm glad you brought this up...

When I first came to the forums in March 2005, I had no idea what I was looking for and AIDSmeds was the very first forum of any kind that I had joined.  At the time, I was feeling extremely alone, why?  I don't know... I had a boyfriend of 14 years, I had a supportive family and friends -- people around me all the time, but still I felt sooooo alone.  This lonely feeling went on for years... and I knew I had to do something.  Soooo, I found AM on the internet and suddenly I wasn't alone anymore -- I found what I was looking for, but it became much more.

AM is like a second family to me, and as such, I think it's normal for all the bickering and bitching that happens in any family.  In my real life family, I'm known as an opinionated bitch.  I don't hold back and most of my family appreciates that, but I will only voice my opinion if asked and when I think it will help.  And I will keep my mouth shut when I feel what I have to say will just make the sparks fly... Okay, I love a good, heated debate too, but I'm not in the habit of hurting someone intentionally, so I try to apply it here as well.

I don't like to censor what I have to say, but I find at times that I have to because I don't want to offend anyone.  Sometimes people cannot handle the truth or constructive criticism, and over time I have come to know who these people are, so I will handle them with kid gloves or I will just not say a word for fear that I will hurt them, and hurting someone purposely is not my forte.  Is it fair to hold back?  No, but it is what is... There is a fine line between giving constructive criticism and outright nastiness.  Nastiness you can see from the get-go... and using abusive language to get your point across, does the opposite -- it makes people shut down completely and they won't even look at the message.  Then there are some people who just can't accept some constructive criticism and they consider this to be a form of nastiness.  They get defensive and lash out, rather than look at the possibility that there might just be something to it.  Have I said something in haste and regretted it later on?  You bet... but it was never done intentionally to hurt someone.  And when I am wrong, I will admit to it.

I remember when I first posted here... many, many posts and very long ones too.  I received a multitude of responses, many of which spoke the truth, straight from the hip, no holding back and as much as it may have hurt hearing the truth, it made me realize my short-comings and I was able to make the changes that I needed to better myself and I learned to deal with HIV in my life.  Had it not been for those who brought my shit right up front for me to see, I never would have made it this far.  And I am very thankful for these people speaking the truth.  I gained much strength through them and their words.

In real life, I have much respect for my family, friends and most people I come across each day.  There are those who I wouldn't give the time of day to simply because I don't like them or they don't like me.  But, I will respect people no matter what... it's how I was raised.  I treat others the way that I would like to be treated.  So I treat AM the same way.  I respect everyone here, as well as their opinions... I may not agree with the views of some people here all of the time, and I will voice my opinions at times, but I will always respect the opinions of others and their life experiences.  We are a very diverse group with many voices, and sometimes we have to weed out the crap and move on.  But I believe most people here have good intentions and the good always outweighs the bad.

"People grow through experience if they meet life honestly and courageously. This is how character is buit."  Eleanor Roosevelt

Offline Benc7

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Re: What do we really WANT from the Forums?
« Reply #20 on: August 02, 2006, 11:05:22 AM »
With this forum, I:

-Take what I need.
-Give what I can.
-Ignore the rest.

Offline Christine

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Re: What do we really WANT from the Forums?
« Reply #21 on: August 02, 2006, 12:30:27 PM »
When I first found this site, I wanted information from it. To learn something that could maybe help me. But when I found the forums, for the first time in a long time, I felt like I belonged somewhere. I wasn't the hiv + friend, I was just me.

Sometimes when I am out in public, shopping or out to eat. I look around, and I feel like I am differnet. I feel like I have the big hiv banner going across my forehead. I feel like I can't share with those people, because they don't relate to my everyday life. But all of you do.

When I am here, I feel like I did before I found out I was positive. I feel more normal. It is hard to explain.

I like coming here to know I am not alone. To know I am not the only one who is sometimes scared, sometimes joyful over small things. I appreciate more than any of you will ever know when you share your experiences, both the good and the bad.

And I don't mind most of the drama or the bickering, because that is what families do. They love, fight, they make-up, they come together in crises, they fight some more, and they make-up again.

Most of all, I feel like I am not alone.
Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline ademas

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Re: What do we really WANT from the Forums?
« Reply #22 on: August 02, 2006, 12:32:31 PM »
I think you explained it very well, Christine.
That was lovely.
xox

Offline Joe K

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Re: What do we really WANT from the Forums?
« Reply #23 on: August 02, 2006, 12:56:12 PM »
Hey Lisa,

While I understand your question, I believe that your post illustrates some of the very issues that you raise.  I'm not bashing you, just trying to get you to see how even your words can be misconstrued by others and that in turn, can lead to confusion.  When you make blanket statements such as it's the attitude of everyone here that diminishes the forums, well what should I make of such a comment?  How does one respond to blanket statements like that, because it is not true that all members have an attitude, in fact, very few do constantly and for the rest of us, yes we have our bad days, but it does not diminish what we have here.

We have discussed this issue in the forums many times and it always seems to come back to a few undeniable issues, with the first being that you need to be specific in your comments or complaints, because painting us all with the same brush is both unfair and unreasonable.  Yes the forums have changed, but like Ann, I've been here since the beginning and I would say that the forums of today are not so different than they were in 2001.  Granted we have more members and so there are more occasions for butting heads, but that's just how life works.

You lament how Matty, Jonathan and Bailey are attacked for their views and I just do not see that happening.  Rather what I see is that we are often challenged on our comments and whether we like it or not, that is also another function of this forum.  We are an incredibly diverse group of people from all over the globe and the simple fact that we come here, share our lives and even with the occasional bickering, we keep coming back for more.

You were afraid that you would be raked over the coals for this post and I must ask why you would even make such a comment?  Do you really see these forums as so small-minded and insensitive that we quash all dissent?  You claim that too many posters do not really read entire posts, so that they would understand and I submit that you might be guilty of the very same.  I defy you to read through the posts and find a number of them that you deem offensive.  My bet is you cannot produce that many posts, simply because they do not exist.

That leads me to the comments about religion and how some perceive that those who express religious views are always attacked and degraded for their beliefs.  Yes that happens on occasion, but very rarely.  What I generally see are posts where the poster uses his/her beliefs to make comments disparaging other posters, simply because they do not share the same faith.  I support all people in whatever beliefs they hold, as long as they do not attempt to use those beliefs to tell me how to live my life.  And for those who would bash anyone for their beliefs, well they deserve the wrath of other posters, which is generally what happens and that reflects that we do a pretty good job of policing ourselves.

We all hold the power to shape these forums to meet our needs.  If you see posts you don't like, move on.  If you see someone bullying another poster, then report it to the Goderators.  If you read a post and don't feel it pertains to you, or you have nothing concrete to add, skip it.  But realize that these forums are also what you put into them.  You obviously care very deeply and that is a sentiment that most of us share.  Fortunately we all remain human, with all that entails and it's that diversity that makes this place so much fun.

So what do I want from these forums?  Absolutely nothing.  A better question to me is what do I get from these forums and that answer would be almost everything.  You may have noticed that at times, I have a very big mouth and I have dug myself into more holes than I care to remember, but never have I felt I was an outcast here, because this forum deals with some of the most difficult issues that we will ever encounter.

There are simple rules, as some posters mentioned above that allows us to participate, where and when we feel like it.  No matter what I have come to these forums for, I have always received support and many times I get the comeuppance that I so desperately need.  That's what friends do for friends.

The bottom line here is that posts like this show how much we all care for these forums and our desire to maintain the high caliber that these forums provide.  Posts like yours are very important so we can discuss our perceptions and all I ask is that we remember that each of us is unique and even though we may butt heads, we've never turned our back on any member who needed our help.

I have always viewed this forum as a living entity, because it is powered by people.  As people, we have foibles and the fact that we get along as well as we do, well I defy you to find another organization with so many members, that is free of drama.  Yes we should always strive to be kind and supportive, but sometimes that requires that we speak the unvarnished truth.  That's also something that friends do for friends.

This post shows how much we all care about this place and I give posters a lot of latitude because I don't know what is going on in their lives.  I choose to believe that people are basically kind and generous and this forum has never disappointed me.  Thank you for broaching this subject and hopefully my thoughts have altered some of your perceptions.

All of us here, start as strangers, with our only bond being that we are positive.  For most of us, we were welcomed with open arms and caressed and supported, until we could stand on our own.  This is a place where I feel safe and loved and where I know I can suffer from foot-in-mouth disease and still be loved.

I believe that the real question we should be exploring concerns how even in such a difficult world, how does a place like this continue to grow and prosper?  It's because of all of us and our ability to overcome just about anything.  Like I said, I get enormous pleasure by being here and no matter what happens, I always know I have a home away from home.  Now that is real power.
« Last Edit: August 02, 2006, 12:57:56 PM by killfoile »

Offline allopathicholistic

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Re: What do we really WANT from the Forums?
« Reply #24 on: August 02, 2006, 12:56:21 PM »
I ask all of you to really give it some thought……………..”What do we really want from the Forums?”

KNOWLEDGE! ........in the areas of treatment, science, etc - youknow, the stuff my ID doctor *SHOULD* go over with me with a fine toothed comb (but he won't because he hasn't enough time and too many patients to care for)

In the past few months I've been introduced to the following for the first time in my life:
[1] TPHA treponemal test 
[2] Florastor probiotic

and much more. From springboards like these I then start my own research. It's no different from having a conversation with a worthwhile friend, neighbor, relative or co-worker. A pleasant 10 minute conversation might seem non-eventful but it can have the profound power to change your life tremendously for the better. A post on a forum can do the *SAME*! Yay!!!

THIS SITE HAS CHANGED MY LIFE - FOR THE BETTER - and my gut feeling tells me it will *continue* to improve my life

And yes some people dislike me and the feeling's mutual - but that's life. That kind of stuff goes on in 4th grade and even when people are 60 years old. C'est la vie! The medical stuff I learn from here is much too valuable to give up for any reason
« Last Edit: August 02, 2006, 12:58:37 PM by allopathicholistic »

Offline Jeffreyj

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Re: What do we really WANT from the Forums?
« Reply #25 on: August 02, 2006, 01:20:20 PM »
What a great question! I love threads that make me think! thanks SDGirl for asking!

1) I want to help others. It makes me feel good when I can. Having HIV as we all know can be a bitch. If I can ease some ones mind, or give someone hope because I have lived for 22 years, great.

#2) I want to Learn:   Having HIV/AIDS is so complex. It absolutely amazes me that every time I come to this place, I learn something new every day. I love to learn. Just because I have 22 years experience does not mean I know it all. Before I came here, I thought I knew soooo much. I was wrong, so very wrong.
I feel it is nearly impossible for someone who is Negative to fully understand what it is like to be positive. So it is just a good feeling to me to be around + people, even if it is just for an hour a day. It is very comforting and brings peace to my heart. And, perhaps because i have spent the past 20 years of hiding my diagnosis, I find it nice to be among my peers. People to share my thoughts with and to listen to their thoughts. What a beautiful thing.
Sometimes I feel alone at a party with dozens of people. I never feel alone in here.
#3)I want help when I need It
It's really nice to get such thoughtful and insightful comments on various little things.


This place makes me feel alive. I know that sounds silly. I may not be explaining it very well. But it is an honest feeling I have inside me. It's a feeling I have only when I'm here. I'm very grateful for all of you who care.
Positive since 1985

Offline david25luvit

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  • Member since March 2005
Re: What do we really WANT from the Forums?
« Reply #26 on: August 02, 2006, 01:33:12 PM »
Like Ann remarked I came here with my life broken and tattered from the challenges that life often throws at us...and somehow found a way to put most of the pieces back together again.  I too challenged the forum at one time...suggesting it was not a 'friendly" place anymore...which at that time was a big mistake.  I found I had actually isolated the very people who have original given me so much love & support.  So when these threads creep up and they have several times in the past year...I usually pay little attention.  Of course there are exceptions to every rule. (I love you too Rich)  And there have been times when I felt like walking away....but regardless of whether I agree with what's posted or not...I feel everyone has a right to their own opinion.  And so do I...  But running away from the forum or from life....  It's just not my style.
« Last Edit: August 02, 2006, 01:37:45 PM by david25luvit »
In Memory of
Raymond David McRae III
Nov. 25, 1972- Oct. 15, 2004
I miss him terribly..........

Offline ACinKC

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Re: What do we really WANT from the Forums?
« Reply #27 on: August 02, 2006, 01:42:18 PM »
Being that I am a total smart ass and in a GREAT MOOD TODAY, my answer is as follows....

What I want from the forums is:
1.  A case of beer (GOOD BEER)
2. 12 Pack of Condoms
3. 3 Naked totally hot chicks (This is MY wish list guys)
4. a Goat (dont ask)
5. and finally, just be here for what ever stupid reason and whatever stupid time i want.  Thats all.

Thanks,
Andrew
Love ya all, even the annoying ones are fun!
LIFE is not a race to the grave with the intention of arriving safely
in a pretty and well-preserved body, but, rather to skid in broadside,
thoroughly used up, totally worn out, and loudly proclaiming--WOW! WHAT A
RIDE!!!

Offline ryeguy

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Re: What do we really WANT from the Forums?
« Reply #28 on: August 02, 2006, 02:01:40 PM »
Not to be completely lynched. Like even when I write something not perfectly thoughtout.  Or am I still on your ignore list?

Offline Biggums

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Re: What do we really WANT from the Forums?
« Reply #29 on: August 02, 2006, 05:02:10 PM »
I reread my earlier post and the ones that followed and I regret I sounded like a big baby.  Yeah there are some, a few, who make it a point to try to shame others who hold religious views.  It makes me mad they are some of the most celebrated people on here.  But it shouldn't.  I should not be so thin skinned and worry about it.  The fact is that there are wonderful people in here who at times have touched me deeply and enriched my life.......Tim, John and Trish, Teresa, Herman, Jeffrey, the list goes on.  You guys are the reason I come back here because you deeply care about the others here regardless of our differences.  So accept my apologies and praise the Lord!   ;D   ;D   ;D   ;D   ;D
44 year old gay man .......just broke up with the only man I've ever really loved.

You can love completely without complete understanding.

Offline blondbeauty

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Re: What do we really WANT from the Forums?
« Reply #30 on: August 02, 2006, 05:28:58 PM »
I don.t know what I want from these forums but I know I got much more than I expected. I recovered from my diagnosis shock in very short time thanks to all of you. It is sometimes hard for me to participate in a forums written in a foreign language and were most of the participants are from a "different culture" but I feel very comfortable and found lots of comprehension.
This is a good place to be.
Thank you all!  ;D
Lisa, you are the BrunetteBeauty in these forums!
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline manchesteruk

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Re: What do we really WANT from the Forums?
« Reply #31 on: August 02, 2006, 05:52:18 PM »
I've been on the forums for about 10 months now and I honestly don't see a difference from then and now.  The differences of opinion seem to be around certain tricky subject which are always going to attract differing opinions anyway.  But whenever support or advice is needed there are always people there to help and thats what makes these forums great the fact that there is always somewhere who has been in the same situation as you and thats absolutely invaluable.
Diagnosed 11/05

"Life is too important to be taken seriously" Oscar Wilde

Offline JohnOso

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Re: What do we really WANT from the Forums?
« Reply #32 on: August 03, 2006, 03:26:09 AM »
I came here getting prepared to die.

But found out i'm gonna make it after all  (where's that furry Rhoda to my Mary when you need him?)

I browse a lot nowadays (everyday as a matter of fact) but don't have the drive to particpate as much anymore.  The Usual Suspects make me shake my head sometimes, but what would this place be without them?

I like drama!


Take care,
John

Offline frankie the cat

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Re: What do we really WANT from the Forums?
« Reply #33 on: August 03, 2006, 06:08:13 AM »
I saw this question and I didn’t think it had much to do with me; I’ve been visiting for about 9 months but only registered this week and have never posted before.  Like a lot of the posters though I do find this site fairly addictive, I come on several times a day just to find out what’s going on and I do want something specific from it.  I’m looking for information, I want to learn from the experience of others and I’m looking for a community. 

As a bit of background, I’m HIV – but my wife was diagnosed HIV+ late last year and I don’t need to tell you what a shock that is.  This was probably the first website I found on the afternoon we came home from the doctor with the diagnosis.  I was desperate for more information and google led me to this site.  Things have normalised now and her health is great but I still want to know everything little thing I can about this disease – I read absolutely everything I can and now know far more about this than I ever really wanted to!  In those 9 months it’s gone from what seemed like a death sentence to something we can get through together if we educate ourselves. 

We live in a small town and I’m sure there are other people with HIV near us but we don’t know them and there doesn’t seem to be any way to meet them.  My wife, let’s call her J, goes to see her specialist regularly and has sessions with a Terrence Higgins Trust counsellor in a nearby city but there doesn’t seem to be any support for the partners of people with HIV.  I have never told a living soul about her diagnosis, never even said it out loud to anyone else. 

Fortunately J and I are very close and this seems to have made us stronger as a couple but sometimes it would be nice to discuss things with other people and to be able to say the word HIV aloud to someone else (even if it is only online).  That's what I want from this forum, a place where you can be honest, you can share learning and where people aren't going to be judgmental. 

Offline Nadine

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Re: What do we really WANT from the Forums?
« Reply #34 on: August 03, 2006, 06:50:34 AM »
Well, let's see...what I want from these forums is exactly what I get....good HIV information (the best, actually) a few laughs, a few tears, new friends. Am I addicted, oh yea!

I agree with Zephyr...We are a family, yes, with the same levels of dysfunction that all families experience. It's just the way it is. 

I do not involve myself with the bickering, I read it, and I usually do have an opinion, but I keep it to myself. That's just the way I am. I don't like to hurt anyones feelings, even if I feel they are wrong LOL

I felt so lost a year ago when I when we found out my husband was positive, I thought for sure he was gonna die on me, even though his doc told us he'd be OK. I didn't believe him. It wasn't until I started reading these forums that I knew things would be fine. Are we going to have some bumps in the road? Probably...but I am now educated enough to deal with it, and for that, I thank each and everyone of you!

 Thanks Lisa for starting this thread.  :)

Offline kcmetroman

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Re: What do we really WANT from the Forums?
« Reply #35 on: August 03, 2006, 08:10:12 AM »
Frankie,

You need to start a new thread and introduce yourself.  Perhaps your wife may be interested too?

 


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