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Author Topic: What is the point ????  (Read 2938 times)

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Offline Andy101

  • Member
  • Posts: 33
  • Hello there,, How are ya ???
What is the point ????
« on: June 06, 2007, 08:35:45 PM »
Hi ya guys. Im Andy and would just like to hear from a few of you relating to your experiences using these forums ???

Now some of yo may think Im being petty or stupid but this site was suggested to me by a good friend as a way to obtain info and this and that,, Now i looked at it for a bit,, then i registered, and I even posted in the INTRODUCE YOURSELF  section,,

I started to read a few threads and i made a few comments,, but apparently and to the moderator that this refers to ,, please dont take offence,, why am I being told i can only reply to certain threads in certain topics ?????

Surely as a "normal" HIV person using a "normal" HIV forum site,, i should be allowed to read and reply to anything going,,??

I read a post in the LONG TERM SURVIVORS  section and I replied to it,, i didnt offer any advice,, I just made a few comments relevent to the topic.. I then get a mail from a moderator saying that that because im still a newbie,, (less than 2 years positive) i should not be posting in that section ???

Surely, there is a great deal of relevent information that i can obtain from these people,(LONG TERM SURVIVORS)  and believe it or not some could benefit from my experiences,, and whoe defines what LONG TERM is ????

Sorry if this causes any hassel, but I would just like to know that IF Im going to be limited to using theses forums are they worth using at all ???

Answers on a postcard please !!!!

Andy
still thinking about this one !!!

Offline Iggy

  • Member
  • Posts: 2,435
Re: What is the point ????
« Reply #1 on: June 06, 2007, 10:34:04 PM »
The point to be blunt is perfectly illustrated by your decision to make this public thread complaining about the LTS having a space that only they can post.

The lives of the LTS are (for many, but not all) drastically different than anyone who has been diagnosed or started treatments in only recent years. 
Some have been insulted by the ignorant as doom sayers or gloomy people simply because they talk about the reality of their lives which many who are not LTS can neither understand nor give any indication of a willingness to learn about.

Quote
Surely, there is a great deal of relevant information that i can obtain from these people,(LONG TERM SURVIVORS)
Absolutely and that is why all are encouraged to read the LTS forums and why most LTS also post throughout the rest of the forums where you can engage them on a multitude of issues (as well as pm them)
Quote
and believe it or not some could benefit from my experiences,,
Yes....but just not in regards to issues that are focused on LTS.

The idea that you may not yet appreciate what those issues are or why your experiences as a newly diagnosed is not necessarily helpful (and in some cases hurtful) to a LTS is a sort of backing for the reason of why LTS need their own space. 

I suggest that being new to the board means that you have not learned about many here or their personal experiences enough to question the m.o. of the forums and of certain members- please take some more time and get to know us before you make any decisions of what is right or wrong here.

Offline Bucko

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  • You need a shine, missy!
    • The Spin Cycle
Re: What is the point ????
« Reply #2 on: June 06, 2007, 10:56:01 PM »
Andy-

I have no place posting in the Women's Forum for obvious reasons. But if I have an idea that might help a poster there deal better with her situation, I can send her a PM.

No one is barred from reading anything here, but responses are limited in Am I Infected, Long Term and Women for a variety of reasons, mostly involving assurance that the posters feel as safe as possible posting what's on their minds, and that the interaction be limited to peers. The PM function is a wonderful tool to reach out on a personal basis, and has been the start of the best friendships I've ever had in my life.

I repeat, you are not barred from interacting with any poster here. But the structure of these boards occasionally dictates the best way in wich such communication can take place.

Brent
(Who PMs with any and all)
Blessed with brains, talent and gorgeous tits.

The revolutionary smart set reads The Spin Cycle at least once every day.

Blathering on AIDSmeds since 2005, provocative from birth

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: What is the point ????
« Reply #3 on: June 07, 2007, 05:09:54 AM »
Hi Andy,

Iggy and Brent did a good job of explaining things, but I just wanted to add one or two points.

I did say in my PM to you that it wasn't that big a deal. I wanted to let you know that the LTS forum was a little special in that it is an area reserved for people who have been living with this virus for a long time. There was nothing wrong with your post in itself and that is why I left it where it was. It was kind of a "heads-up" for future reference. I also used the opportunity to answer your question about posting a link to your own website.

We do have some posting guidelines here - they are in place to help the forum run smoothly. Anytime you have a large group of people something like this is needed. Have a look at the first thread in some of the forums - the Welcome Thread. Not all forums have their own, and the one at the top of the Living forum applies to all forums. The Am I Infected forum has its own guidelines that apply to that forum only, in addition to the guidelines in the Living Welcome. Please do check the Welcome Threads out as they don't just contain guidelines - some also contain information on what else is available around this website.

I hope you stick around and give the forums a chance. You're bound to make some friends, in addition to having access to information which will make your life with hiv just that bit easier.

And by the way, I didn't take offence and I hope you didn't either. I'd much rather people ask for clarification, rather than stew in silence.

Ann
xxx
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 Central79

  • Member
  • Posts: 527
Re: What is the point ????
« Reply #4 on: June 08, 2007, 08:02:40 AM »
Hey Andy

Welcome to the forums. The LTS forum was only introduced fairly recently, and like you I had reservations about whether it would work, or whether it would lead to the balkanisation of the forums and the seperation of experience from enthusiasm!

I was wrong. The LTS forum has worked really well - and often stuff that newer-bies read in there gets transferred across to the main "Living With" forum, and opened up to a general discussion. You're free to do that, or PM anybody on the board as mentioned previously. I think it's important for LTSs to have a space of their own, as they have unique needs.

I've only been diagnosed 18 months, and only a member here for 6, but I get a lot out of it. I hope you continue to participate and get something too.

All the best,

M.
Diagnosed January 2006
26/1/06 - 860 (22%), VL > 500,000
24/4/06 - 820 (24.6%), VL 158,000
13/7/06 - 840 (22%), VL 268,000
1/11/06 - 680 (21%), VL 93,100
29/1/07 - 1,020 (27.5%), VL 46,500
15/5/07 - 1,140 (22.8%), VL not done.
13/10/07 - 759 (23.2%), VL 170,000
6/11/07 - 630 (25%), VL 19,324
14/1/08 - 650 (21%), VL 16,192
15/4/08 - 590 (21%), VL 40, 832

Offline Andy101

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  • Hello there,, How are ya ???
Re: What is the point ????
« Reply #5 on: June 08, 2007, 08:31:12 AM »
Firstly I would like to thank you all for the comments made regarding this post,, but and it may just be the way that I look at things ,, the thing that put me off was the fact that once again im being told NO,, U dont fit in,,,

The way I look at things is quite simple,, Yeas there is a section for LONGTERM SURVIVORS,, and yes to a point i can see that they may need  NOT DESERVE a little place of their own,, but i didnt actually begin a thread in that section, it was simply a responce to a post that was made. As I have said,, the thing that put me off was the fact that i was being made to feel that i didnt deserve to reply,, simply because i havent had this illness that long,, I also asked the question as to who defines what long term is ??

In all the literature I have seen I have seen no definitive time scale to be called a long term survivor.

Im sorry if Im rambling on , but to be excluded on a HIV site by HIV people for not having HIV long enough ,, it really does make me worry.

And I know that people will read this and think god your being silly,, well maybe to those i am,, but to me I am not,, I have been excluded from so many things and places since my diagnosis, that a site like this is the LAST place i thought i would find any kind of discrimination to wards me..

thanx for reading

Andy
still thinking about this one !!!

Offline DanielMark

  • Member
  • Posts: 1,475
Re: What is the point ????
« Reply #6 on: June 08, 2007, 08:43:05 AM »
Hi Andy,

Welcome.

As in any forums group, there are guidelines to keep things running smoothly. I don’t feel “excluded” if I’m asked to respect those, and am a bit baffled why you would take that personally. The posting guidelines apply to me and you anyone else who wants to participate – for the good of everyone.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Andy101

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  • Posts: 33
  • Hello there,, How are ya ???
Re: What is the point ????
« Reply #7 on: June 08, 2007, 08:57:50 AM »
Hi Daniel

You seem to be missing my point,, I have said that it may be the way that I look at things,, The point is,,

I didnt start a post in the section,,I havent ground the site to a halt by posting my responce,, it was just a responce, my contribution to a members thoughts on how music played a part in their life.

But I cant do that,, because Im being told I havent been ill long enough,, and that really is the bottom line about it,,
because im a "NEWBIE" i cant trype on that piece of webspace because its for the Long Term Suvivors. Now pardon me ,, but what makes them more deserving and I reall do not mean any disrespect by that comment,,

This is a HIV site for HIV people for families and friends that are affected by HIV.
We all deal with this in our own way, we all have different views and needs and what ever else,, but that last thing that i need is to be made to feel that just because i am a relativly new statistic, i cant respond to post's,, especialy on a HIV site such as this,,

the main point of this is that I DIDNT BEGIN THE POST, I DIDNT BEGIN the thread ,, i made a comment, i agreed with some one,, but im not allowed to share that comment with the rest of the group in that section,, just because Im a newbie!!

again im sorry for rambling

Andy
still thinking about this one !!!

Offline redhotmuslbear

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  • Posts: 605
  • A genuine certified freak of nature, and a hot one
Re: What is the point ????
« Reply #8 on: June 08, 2007, 09:02:44 AM »
Im sorry if Im rambling on , but to be excluded on a HIV site by HIV people for not having HIV long enough ,, it really does make me worry.

And I know that people will read this and think god your being silly,, well maybe to those i am,, but to me I am not,, I have been excluded from so many things and places since my diagnosis, that a site like this is the LAST place i thought i would find any kind of discrimination to wards me..


At the risk of being accused of flaming, let me throw out a phrase here:  white male privilege.  All of us light-skinned XYs act out from time to time when denied it, and an HIV diagnosis certainly gets in the way of it with important stuff like getting laid.  Continuing to harp on safe space for any group--women, people of color, long-term survivors with HIV, people with other physical challenges--is often a sign that we've had our perceived birthright as white men to be anywhere and everywhere, and to know every conversation that passes before us (damn, crowds of American Sign Language communicators drive me nuts  :o) has been trampled.  Instead of continuing to pine for something we aren't going to get, we need to remember that there is still plenty of space for us, including most of the forums on this site.

Peace,
David
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 24,399
Re: What is the point ????
« Reply #9 on: June 08, 2007, 09:10:58 AM »
Andy, if you want to gather evidence that affirms the things that piss you off, this imperfect world (and these Forums) will definitely oblige you.

Things and places have their rules and some may not be to your taste.

What I can tell you with some certainty is that if you take a breath and hold off for now with your complaints, there is a lot of support and information that is potentially available to you here. Yes, there are some rules. If you stick around for a while you might even come to appreciate why we have them.

We try to keep those rules to a minimum. Experience has taught us the value of having them including having a couple of specifically designated Forums.

You're not alone in wanting to respond in those sections about which we have some rules. What I would suggest is that rather than gathering steam with your anger about what you don't like here, take a breath and give yourself time to explore and experience what this site is about. Hopefully you will find it to be worth your effort and patience. And to answer your question, THAT is the point.

Cheers,
Andy Velez

Offline David_CA

  • Member
  • Posts: 3,245
  • Joined: March 2006
Re: What is the point ????
« Reply #10 on: June 08, 2007, 09:30:06 AM »
Andy, we (you and I) also can't post in the 'Positive Women' forum.  Why?  Because those are the rules.  We (you and I) don't get to use the ladies room when we go out to eat either.  There are places for us, and there are places that are not for us.  What I'd suggest... if you want to reply to a post in an 'off limits' forum, it's simple: start a new thread in an appropriate forum (Living with HIV, Off Topic, etc) and relate it back to the original post if you want.  You can also quote something from another thread in your own new post. Another option is to PM a response to another member.

Many of us don't read the posting guidelines that most forums have prior to posting, but they apply anyway.  You didn't realize that you weren't allowed to post somewhere, you were told so, that's all.  Don't take it personally.  Believe me, there are plenty of other things to read and respond to.

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 DanielMark

  • Member
  • Posts: 1,475
Re: What is the point ????
« Reply #11 on: June 08, 2007, 10:33:56 AM »
Hi again Andy,

No, I understood the point you were trying to make perfectly fine. It seems you don't want to accept that there are guidelines for a few of these forums. Yes, you responded where you shouldn't have, and no it did not cause the end of the world. Regardless, you did violate some guidelines and were (from what I gather) politely told about it in private. It's you who have made this an issue now (and seem to be hurt or offended somehow)  and that's too bad really.

Try to keep things in perspective. There are many other forums here where you can post your thoughts and ideas on various topics.

Thanks in advance Andy for saving me a lot of typing:

Quote
You're not alone in wanting to respond in those sections about which we have some rules. What I would suggest is that rather than gathering steam with your anger about what you don't like here, take a breath and give yourself time to explore and experience what this site is about. Hopefully you will find it to be worth your effort and patience. And to answer your question, THAT is the point.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Andy101

  • Member
  • Posts: 33
  • Hello there,, How are ya ???
Re: What is the point ????
« Reply #12 on: June 08, 2007, 10:45:51 AM »
Dear all please review the following pices if info taken from the welcome forum for LTS, pleas pay particular reference to the highlighted section!!

So,, if this is the welcome thread ,, WHY have i been asked NOT TO REPLY to any post's in this section,,??

""This forum is a safe place where those who have been living with HIV for anywhere from several years to decades can come to discuss the issues they confront. Among other things this is where they can talk about their experiences as well as the special challenges they have to deal with physically, emotionally and otherwise that come with having lived with HIV for a lengthy period of time. It is also a space intended for those who maybe more recently infected but are older in years, and therefore have to deal with special issues related to living with HIV at an older age.   
 
At the same time we hope that those who are newer to living with HIV will be able to benefit from the knowledge and experience that will be shared here. We are not excluding anyone from participating here, but we do ask that you be mindful of the special needs for which this particular Forum has been established.  
 
Thank you for your cooperation.

For further information on the AIDSmeds forums, including posting guidelines, please visit the Welcome Thread found in the Living with HIV forum.!!
still thinking about this one !!!

Offline Dachshund

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  • Posts: 5,942
Re: What is the point ????
« Reply #13 on: June 08, 2007, 11:02:48 AM »
Yes yes yes you're on to us it is all a sinister plot. I noticed you brought up the subject when you posted in LTS wondering if you should post there in the first place. If this is the biggest problem you encouter on the road to aidsville consider yourself lucky. Much ado, much ado....

Offline Andy101

  • Member
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  • Hello there,, How are ya ???
Re: What is the point ????
« Reply #14 on: June 08, 2007, 11:11:51 AM »
thanx for your input Daschhund,,

but i assume that you havent read the full story, or read my reply to Tiggers post in LTS,, I actually wondered if i were allowed to mention my personal website on the site,, i never questioned anything about being allowed to reply to a post.

Love the pic by the way, i used to have two Daschunds, very loving dogs.

Andy
still thinking about this one !!!

Offline Dachshund

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Re: What is the point ????
« Reply #15 on: June 08, 2007, 11:14:16 AM »
thanx for your input Daschhund,,

but i assume that you havent read the full story, or read my reply to Tiggers post in LTS,, I actually wondered if i were allowed to mention my personal website on the site,, i never questioned anything about being allowed to reply to a post.

Love the pic by the way, i used to have two Daschunds, very loving dogs.

Andy

...if you love the mighty dachshund then you can't be all bad  ;D  relax get to it.

Offline Queen Tokelove

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  • Smokey the Smurf
Re: What is the point ????
« Reply #16 on: June 08, 2007, 10:27:27 PM »
Hi Andy~~

I understand your point. I am 10 yrs poz and I'm not a LTS or at least I don't think I qualify yet. What I fail to understand is why after getting replies from 2 moderators, that you still insist to waste precious energy dwelling on it? There is always something you can ask or contribute to in another part of the forums. Not trying to be an insensitive bitty but just saying...I hope you can get past this and give this forum a chance. There are great people here and I for one would like to learn more about you. Hope ya hang around....
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: What is the point ????
« Reply #17 on: June 09, 2007, 05:14:52 AM »
Andy,

As I told you in the now notorious PM, IT ISN'T A BIG DEAL!

If your post were that inappropriate for the forum, I would have deleted it or moved it to a more appropriate forum. I didn't. No biggie, eh? I was just pointing out to you that it wasn't a place for you to be posting on a regular basis.

Ann
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 Andy101

  • Member
  • Posts: 33
  • Hello there,, How are ya ???
Re: What is the point ????
« Reply #18 on: June 15, 2007, 07:57:41 PM »
Hi ya guys,

Firstly thanx to all those that replied, and secondly, I unreservedly apologise for any confusion for the way my mind thinks.

I have spoken to a few people from the site about this and I do understand the theory behind the section.
Please be assured that I have not taken offence at any of the comments made and it was not my intention to upset or offend others on the site.

Best regards and wishes of good health for every one,

Andy
xxx
still thinking about this one !!!

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: What is the point ????
« Reply #19 on: June 16, 2007, 05:18:51 AM »
Thanks Andy, apology unreservedly accepted.  :-*  ;)

Ann
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

 


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