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Author Topic: HIV Lite  (Read 11922 times)

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Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
HIV Lite
« on: November 29, 2006, 09:38:01 AM »
Well, I guess things have come full circle, and it is now time for me to bid you adieu.

When I joined this forum in February of ’04, there was a climate of discourse and discussion that bordered on the miraculous.  This climate persisted for about a year and a half, until something started to happen.  As I see it, many new members started to register who embraced the new mantra that HIV was no more alarming than an Excedrin Headache, and they knew that was the truth because their doctor said so and they were going to believe the doctor; who by the way make much of their income pushing drugs and messages of the drug companies.

I protested at every opportunity, due to my knowledge of HIV from 27 years of activism, several years as a director of two AIDS Organizations, and from research, which most of us “ANCIENTS” did to be able to survive.  Many of you know that I even sold a home and moved to another state to rid myself of an Infectious Disease Specialist who was so very ignorant about HIV that she was prescribing HIV medicines which were counteracting each other.  That is how committed I am to staying alive, and learning everything I can to fight this bug that is making every attempt possible to kill me.

I still protest the adoption of "HIV Lite" platatudes, and unsound bullshit which has no credence with People Living With HIV/AIDS, and to that end, sometimes challenge people’s credentials when they present here.  There are people like Queen Akasha, Eric, Win, Fallen Angel, Strong Guy and others who are so offended by my style and my confrontations, that it seems they would love the whole world to be nothing but love and light and for all of us to get along.  We should never question anyone who wants to present as a solid authority on the subject of HIV and all the accompanying bullshit that goes with fighting this bug.  I however, have fought more than one person in my experience who I have discovered to be nothing but charlatan in their nature, and have challenged many who spread false information about HIV, only to make themselves appear better, or to finally get some of that HIV money that the government loves to spread around and does so with no more consciousness, than a ghost.

I have personally challenged the number two man under the Surgeon General Carmona, as I have the President’s Cabinet advisor on HIV.  I did this at a Bi National HIV Border Summit, held in El Paso, Texas, and did it face to face!  I have also personally challenged our dear Anthony Faucci, who has a miserable habit of coming on national news outlets and dictating who is currently at risk of infection with HIV and who is not.  Unfortunately he is so very tempted to dictate numbers that have little or nothing to do with the current state of HIV in the hinterlands of this great sleeping country we call the United States.

I have not been terribly active lately, due to the fact that when I make an attempt to keep the Living With HIV Fourm on subject, I constantly get PMs and posts in my threads which slam my forward approach and my questioning nature. 

Most recently, I was accosted in my thread asking for Eldon to come forward with a clear answer to questions which many of us have about him and his fountain of “Love and Light”.  Well, I am fatigued with the current state of HIV Lite, and the current level of ignorance to the reality that this is in fact a TERMINAL DISEASE THAT WILL KILL YOU, AND IS DOING SO TO SEVERAL OF THE MEMBERS WHO HAVE BEEN FORCED INTO SILENCE, DUE TO THE FACT THAT NOBODY WANTS TO HEAR THAT PEOPLE IN THE UNITED STATES ARE STILL DYING FROM HIV!!!!!

So, you can all have your HIV Lite and I well go back to the guest list to observe and take note of the current level of banality.  I will comment rarely, and will sequester myself to my Blog as long as the owners of this site will have me.  As for the NEW FACE OF AIDS, I just cannot come to leave the people and friends I have made here, and will keep contact with those who I have grown to love and respect.  Otherwise, this will have to  be my farewell post from this very interesting, informative and challenging website, and I will be from now on, lurking in the shadows to gather as much information about the “newly undead” so that I will be able to do the best work for my community, and for my AIDS Service Organization here in Arizona.

Strong Guy, Queen Akasha, Eric, Eldon and any others of you who have been offended by my quest for accurate, science based and true HIV knowledge; good bye and have a wonderful life.
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 Teresa

  • Member
  • Posts: 1,753
Re: HIV Lite
« Reply #1 on: November 29, 2006, 10:26:11 AM »
Tim,

This saddens me. You are one of the people that got me thru the first few weeks of hubbys diagnosis. I really don't know what I would have done without you. I don't say that lightly, I mean it.

What about the rest of us that need your wisdom and advice?

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

Offline MSPspud

  • Member
  • Posts: 613
  • Joined Mar 2005 - Formerly UofMurbs
Re: HIV Lite
« Reply #2 on: November 29, 2006, 10:40:55 AM »
Tim –

Take some time off and try to find some perspective.  If the current state of the forums are causing you more harm than good, then by all means do what you need to do.  In the future, I really hope you reconsider this position though.  I am not a fan of members leaving or saying their going to leave when emotions are blistered.  There is enough room for everyone on this forum and I would not come here daily if it wasn’t for the diversity of perspectives provided.  If there’s one thing I’ve learned in higher education, it’s to question everything.  I see your contribution as providing just that - food for thought. 

This shouldn’t be about sides, but rather adjusting to the growth of this community and continuing to let your voice be heard.  I for one am listening and still learning!

Fondly,
Jason

Offline Grinch

  • Member
  • Posts: 325
Re: HIV Lite
« Reply #3 on: November 29, 2006, 10:59:06 AM »
*Shows Moffie a seat over in the shadows with all the others that have given up*

   

Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 25,363
Re: HIV Lite
« Reply #4 on: November 29, 2006, 11:53:52 AM »
Moffie, I am of course not privy to what's gone on in those PMs -- nor do I want to be.

I do know without a doubt that Peter, Tim, Ann and I see living with HIV as one tough row to hoe. Business is never as usual here. Urgency is always the note of the day. And I see that again and again in the response of members here to each other.

Moffie, I think you are doing a disservice to the predominant number of members and readers who come to this site. People may not express it in exactly the ways you (or I) sometimes would like them to, but I don't see this site as being "poolside HIV." Serious questions and issues come up all the time along with other more frivolous exchanges.

Maybe I am missing something here, but I'm actually not clear about what you specifically want people here to be doing differently.

You have your own special gifts and knowledge which can still be helpful to others as evidenced by comments already written here and which others have expressed to you many times before today. I guess to some extent you have to decide how generous you are feeling about tolerating some tiresome stuff. It seems very clear to me about which choice is the affirmative one.

There is no way you can express yourself honestly and responsibly and not run into opposing opinions. If they don't make sense to you, dust 'em off and just keep going.
« Last Edit: November 29, 2006, 11:57:52 AM by Andy Velez »
Andy Velez

Offline Terry

  • Member
  • Posts: 339
  • 7/13/82 Infected
Re: HIV Lite
« Reply #5 on: November 29, 2006, 12:09:27 PM »

Oh Tim,

Just take a break for awhile. It’s so funny I wouldn't have known whom Eldon is until you brought him up in that other thread. I don’t find anything he posts as being interesting. As a rule I just ignore anything with his name on it.

I feel he just likes to type “Have the best day” over and over again. O.C.D.

You would be doing us all a disservice by staying silent. As you well know misinformation can be more dangerous than no information. Now go be nice to yourself.



Offline Joe K

  • Global Moderator
  • Member
  • Posts: 3,877
  • 31 Years Poz
Re: HIV Lite
« Reply #6 on: November 29, 2006, 12:23:51 PM »
"Now I know I have a heart, because it is breaking."

Scarecrow, Wizard of Oz

Offline ACinKC

  • Member
  • Posts: 2,994
  • Bring it VIRUS! #2 Ranked In-crowd Member!
Re: HIV Lite
« Reply #7 on: November 29, 2006, 12:31:45 PM »
Moffie, I am of course not privy to what's gone on in those PMs -- nor do I want to be.

I do know without a doubt that Peter, Tim, Ann and I see living with HIV as one tough row to hoe. Business is never as usual here. Urgency is always the note of the day. And I see that again and again in the response of members here to each other.

Moffie, I think you are doing a disservice to the predominant number of members and readers who come to this site. People may not express it in exactly the ways you (or I) sometimes would like them to, but I don't see this site as being "poolside HIV." Serious questions and issues come up all the time along with other more frivolous exchanges.

Maybe I am missing something here, but I'm actually not clear about what you specifically want people here to be doing differently.

You have your own special gifts and knowledge which can still be helpful to others as evidenced by comments already written here and which others have expressed to you many times before today. I guess to some extent you have to decide how generous you are feeling about tolerating some tiresome stuff. It seems very clear to me about which choice is the affirmative one.

There is no way you can express yourself honestly and responsibly and not run into opposing opinions. If they don't make sense to you, dust 'em off and just keep going.

Yeah what Andy said.
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 ACinKC

  • Member
  • Posts: 2,994
  • Bring it VIRUS! #2 Ranked In-crowd Member!
Re: HIV Lite
« Reply #8 on: November 29, 2006, 12:35:39 PM »
Besides Moffie, who will help with the balance of these forums if you guys (the ancients as you call them) keep leaving?  I for one am lobbying hard to keep you.  I feel your knowledge is immense and your experiences are extremely valuable for us newbies to learn from.  We newbies are heading in your direction and I for one would like to think that when i am an "ancient" I will bitch slap the young whipper snappers into shape just as you do.  Stay!  You're loved more than you know.
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 MSPspud

  • Member
  • Posts: 613
  • Joined Mar 2005 - Formerly UofMurbs
Re: HIV Lite
« Reply #9 on: November 29, 2006, 12:44:14 PM »
Besides Moffie, who will help with the balance of these forums if you guys (the ancients as you call them) keep leaving?  I for one am lobbying hard to keep you.  I feel your knowledge is immense and your experiences are extremely valuable for us newbies to learn from.  We newbies are heading in your direction and I for one would like to think that when i am an "ancient" I will bitch slap the young whipper snappers into shape just as you do.  Stay!  You're loved more than you know.

Yes, it's kind of like this last election.  There shouldn't be a lopsided government as with this forum.

Offline Queen Tokelove

  • Member
  • Posts: 6,033
  • Smokey the Smurf
Re: HIV Lite
« Reply #10 on: November 29, 2006, 12:50:44 PM »
Moffie,

Call me what you want to, I really don't care. As I have stated in my other post in regards to Eldon, I do not see nothing wrong with his positive attitude. I feel you did not have to put him out there to be roasted because of what he believes in and because he didn't have an Intro posted. It didn't have to be like that when all it took was a PM. You are vocal any other time, what a pm is not good enough because your following can't see it?

Oh, and because I'm not an activist and go to rallies, etc, I'm not worthy to post my opinion? Or because I don't have 20+ yrs of being poz, I don't know what I'm talking about? My experiences are worth shit?This is the attitude I was talking about when I said people look on naive people as being inferior or in your words, HIV lite. Excuse me for not wanting be all gloom and doom about my virus. I also do not look at my virus as being an excedrine headache, I choose to follow my doctor's advice and you seem to have a problem with that.

I don't recall you ever challenging a post I have posted to til now. Now why is that? Because I don't share your view on doom and gloom, and now I suppose by including me in your rantings, there is a bull's eye on my back? Well, let me move that bull's eye for you, I think it would look better on my ass, I got plenty of ass, so you and your crusaders can't miss me when the next round of daggers get thrown.


(Who refuses to let negativity rule my life and has much more living to do, sorry no gun or rat poison by the night stand)
« Last Edit: November 29, 2006, 01:29:48 PM by Queen Akasha »
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 wellington

  • Member
  • Posts: 508
  • Don't sweat the little things.
Re: HIV Lite
« Reply #11 on: November 29, 2006, 01:03:55 PM »
From where did the term "HIV Lite" come? It's quite a loaded label and rather dismissive if you ask me. If it's a label that you've invented, based upon your observations, and applied to a group of people here, you can likely expect to be called to account for your attitude.

It seems to me that if you want to be an activist, that territory comes with a certain amound of lightning. Make sure you're well grounded, would be my advice.

Offline Queen Tokelove

  • Member
  • Posts: 6,033
  • Smokey the Smurf
Re: HIV Lite
« Reply #12 on: November 29, 2006, 01:31:47 PM »
From where did the term "HIV Lite" come? It's quite a loaded label and rather dismissive if you ask me. If it's a label that you've invented, based upon your observations, and applied to a group of people here, you can likely expect to be called to account for your attitude.

It seems to me that if you want to be an activist, that territory comes with a certain amound of lightning. Make sure you're well grounded, would be my advice.

I'm glad someone sees the term as being dismissive....
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 ACinKC

  • Member
  • Posts: 2,994
  • Bring it VIRUS! #2 Ranked In-crowd Member!
Re: HIV Lite
« Reply #13 on: November 29, 2006, 01:37:29 PM »
WOW Tim Horn is reading this....  See Moffie you ARE important. 

I once got a PM from Ann you know.  I'll never wash my inbox again!!!
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 skeebo1969

  • Member
  • Posts: 5,707
Re: HIV Lite
« Reply #14 on: November 29, 2006, 02:04:39 PM »


  Moffie,

      We have had our differences in the past.  Much of it was handled pretty badly on my part.   People were not here in the past when some of the more intriguing issues involving Eldon came up.   They are just looking at the here and now.   They were not here when he was asking for some donations to some fund or something; can't really recall because I distanced myself from that subject immediately.   Don't leave because of a few that don't know the true underlying circumstances here...  It is not their fault they are not privy to it.

      I would never ask anyone to stay... with one exception... That being you. Don't let the few chase your message  away from us,  it is important to most.   Akasha and the likes can follow his advice, a relative newbie and be happy.   This will be my last comment on this subject because to me it just ain't worth it anymore, and Tim I hope you can do the same.   

   Thomas

I despise the song Love is in the Air, you should too.

Offline StrongGuy

  • Member
  • Posts: 492
Re: HIV Lite
« Reply #15 on: November 29, 2006, 03:39:03 PM »
Moffie I've lost count as to how many "good by cruel aidsmeds" diaries you've written, but at least you are consistent.

Putting it simply, the only issues I've had with you is  1) predicting other people's futures and addressing those who differ in a condescending tone and branding them naive and showing no respect for diverse opinions and progress 2) putting someone out on the stake to roast.

End of story.

Whether you stay or go makes no difference to me, but it appears by this thread you have every intention of laying some of us out to roast so people feel sorry for you, write words of encouragements so you stay, stroke your ego, and the rest of us look like we are the bad guys (and you include "Eric" on this list? The guy is the nicest person on here from what I've read. A travesty that you are given free reign to malign like this).

I post rarely and, if you actually read my posts, you'll know my experience with "HIV" has not been "lite." There are people on here who gain insight from your views obviously. Wonderful. You're not going to get everyone to agree with you or like you. Such is life. These woe-is-me attention grabber diary that seeks to divide, malign and conquer does nothing but split the community apart is really ashame.

It's EXTREMELY obvious you have a picture as to what you think AIDSmeds should be, ones view of HIV should be, what people should or should not say, people roles, and work very hard to perpetuate that narrow view on these forums.

Sorry if I don't fit the script, but I'll defend my view and those of others till my death. I'm not going anywhere.

Good luck Moffie and I'm glad this diary or self-esteem booster at the expense of others helped you. I'm quite confident I will see you on here again.

Mikey :) :)
(And if this thread isn't flame-bait, I don't know what is.)

"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

Offline kcmetroman

  • Member
  • Posts: 567
Re: HIV Lite
« Reply #16 on: November 29, 2006, 04:00:52 PM »
Touche'

Offline thunter34

  • Member
  • Posts: 7,324
  • His name is Carl.
Re: HIV Lite
« Reply #17 on: November 29, 2006, 04:09:27 PM »
Wow....there's an HIV Lite?

I just knew I jumped in too early!  I've got that old kind...with lots of sugar & cholesterol and frequently fattening.  I should have held out for this new version.  Meantime...I'll keep hoping for an 'HIV Free' or an 'I Can't Believe It's Not HIV'.

I can understand why excessive positivity without a bit of background can come off as providing pat answers to serious questions.  I can also see why many can't help but support a little optimism now and then.  Without some hope, what have we got?  To everyone, I ask:  Without being able to meet all these viewpoints with some civility, what are we doing here?  

AIDS isn't for sissies.

Offline ACinKC

  • Member
  • Posts: 2,994
  • Bring it VIRUS! #2 Ranked In-crowd Member!
Re: HIV Lite
« Reply #18 on: November 29, 2006, 04:15:09 PM »
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 Queen Tokelove

  • Member
  • Posts: 6,033
  • Smokey the Smurf
Re: HIV Lite
« Reply #19 on: November 29, 2006, 04:37:19 PM »
Mikey,

I couldn't have said it better!!!!!!
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 thunter34

  • Member
  • Posts: 7,324
  • His name is Carl.
Re: HIV Lite
« Reply #20 on: November 29, 2006, 04:39:07 PM »
LMAO at ACinKC

I'll never wash my inbox again!!!

Oh, dear...I'd never do that!  I'd want to keep getting male in there!  (just kiddin' ya, doll)
AIDS isn't for sissies.

Offline DanielMark

  • Member
  • Posts: 1,475
Re: HIV Lite
« Reply #21 on: November 29, 2006, 04:52:00 PM »
Tim (Moffie65),

I hardly got to know you, or see whatever has upset you (since I don't spend a great deal of time here), so, I'll just bid you adieu and hope the future brings you brighter days.

Godspeed and take care,

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Boo Radley

  • Member
  • Posts: 1,252
  • Not a "real man" and damn proud, mithter... FAB
    • Animal Rescue New Orleans
Re: HIV Lite
« Reply #22 on: November 29, 2006, 05:23:45 PM »
Tim,

Maybe it's because I don't visit AIDSmeds too often any more that I cannot, from experience, fully understand your decision to leave but I implore you to reconsider and stay.  You are for many a voice of reason, experience, and responsibility.

I know there have been heated exchanges about this disease related to us "old-timers" and the relative "AIDS newbies" but luckily I seem to have missed most of them.   The poll I posted in Off-Topic ( http://forums.poz.com/index.php?topic=5988.0#bot ), to which you eloquently responded, was an attempt to appear neutral with a situation I feel adamantly about: downplaying the seriousness of HIV disease by the media and others will likely increase the number of new infections.   The poll wasn't meant to be scientific (obviously...) or necessarily meaningful; curiosity compelled me.

Just as there was an almost palpable line drawn in the picture of this epidemic in the mid-90s when protease inhibitors came out (and the media announced "AIDS is cured") in the new millennium another shift has occurred.  (In the affluent USA) People more recently infected are much less likely to experience the horrors we experienced (or not on the same magnitude) in the 1980s while our President and country ignored the disease and thousands died.  Many of the newbies will not progress to an AIDS stage as rapidly as those infected longer ago and, if they're lucky, they never will.  The problem is HIV usually takes 10 or more years before an infected person becomes soi-disant symptomatic (as if HIV has not been busily at work all that time).  Although I sincerely believe HIV disease is currently NOT a "chronic manageable illness" I hesitate to tell others their optimism is wrong.  

The main reason for hesitating is my experience with HIV, and I believe you will agree HIV is a unique virus for each person infected and the "10 year average" is simply that - a statistic which means nothing on an individual basis.   I believe I've been infected for about 25 years but I have yet to get one OI -- my AIDS diagnosis was made strictly based on CD4 count.  I began meds only 2 years ago and I'm doing fine on an inadvisable HAART combo of AZT, 3TC, and abacavir in the form of Trizivir (i.e., 3 NRTIs without an NNRTI or PI).   Clearly our individual experiences have been and are vastly different and I sincerely believe your experience has been more common than mine.  Many newly infected individuals benefit greatly from the 20+ years of HAART experience of people like you.  I cannot honestly tell them they will go through the hell so many are still going through.  I hope they will not but fear the picture is not as rosy at they have been led to believe. 

You are too valuable a member of this community to lose.  Please don't leave.

Boo
String up every aristocrat!
Out with the priests and let them live on their fat!





Everything I do, say, think, excrete, secrete, exude, ooze, or write © 2007 Sweet Old Boo, Inc.

Offline fearless

  • Member
  • Posts: 2,191
Re: HIV Lite
« Reply #23 on: November 29, 2006, 06:31:50 PM »
We all have HIV.

HIV effects each and everyone of us in a different and unique way.
We all deal with it as individuals.
We all have our own individual experiences and outlooks on life.
The meds affect us in different ways.
All of our opinions are equally valid.
We are all reaching out for help and support.
We are all individuals.

Peace to you all.

Steve
Be forgiving, be grateful, be optimistic

Offline aupointillimite

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Re: HIV Lite
« Reply #24 on: November 29, 2006, 06:39:04 PM »
It's hard to speak on behalf of the alarmingly growing number of "newbies" out there (Proud Newbie Member since 2005), but I can personally say that I have nothing but respect for the people out there who have been living with this disease for decades.

Everytime I disclose to someone and am not treated like the walking plague, it's because of what pos people before me did.

Everytime I remember that the law protects me in housing, jobs, and other aspects, it's because of what pos people before me did.

And everytime I pop a pill, I'll know it's because of research that pos people before me took part in.

I'm eager to hear and learn from the experiences of those who came before me; no one else knows about it but them....

However, those of us who were born in the years after AIDS was described don't know the horror of the early 80s, and we don't know what it's like to bury your friends... in some ways, AIDS is still pretty abstract to us.  We're products of our environment, and everything we've been told in our formative years has told us that "HIV isn't what it used to be."  We're young and hopeful; we accept it.

My generation is the first one to be completely transformed by the Internet; we're the first image generation; our faith in technology is pretty much boundless, and furthermore... we're young and not have not yet seen our friends die.

All our lives, we've seen diseases fall by the wayside; my mother remembers getting measles and mumps.  I did not.  My father got scarlet fever.  I did not.  Those of us in our 20s with HIV have been so insulated against harsh biological realities that it's very disruptive to our paradigm that we have no comprehension of dying from an infectious disease.  We understand it cognitively... but emotionally?  No.

Is this foolish?  Yes.  Is it harmful?  I believe it is only when we delude ourselves into thinking that the lives of the Ancients (as some might say) are unimportant or that us newbies don't have to take care of ourselves.

But of all the foolish hopes that one might have... I don't think that hoping that someday science will take this all away is all that bad.  It beats getting depressed about the hopelessness of it all. 



 
Your tastebuds can't repel flavor of this magnitude!

Offline thunter34

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Re: HIV Lite
« Reply #25 on: November 29, 2006, 06:51:57 PM »
In my humble opinion, aupointillimite has just taken honors for the best post of this thread.

Thanks, baby!

~+
AIDS isn't for sissies.

Offline Lis

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Re: HIV Lite
« Reply #26 on: November 29, 2006, 06:53:52 PM »
I can dig it!

BUMP!
poz 1986....

Offline northernguy

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Re: HIV Lite
« Reply #27 on: November 29, 2006, 07:14:31 PM »
Tim, being new here I'm not aware of all that has gone before, but I'd be dismayed if you decided to take your perspective away from these forums.  On Nov. 10 you put out a call fro the "dinosaurs" to participate more and return, I think that was a good call. 

At this stage of my life with HIV ( a whopping 7 months) I need to hear the optimistic message, that life isn't over.  The fact that you are still here is proof of that.  Will it be easy?  No, I know that and that's why the experience of those who have gone through this before me are so valuable.
Apr 28/06 cd4 600 vl 10,600 cd% 25
Nov 8/09 cd4 510 vl 49,5000 cd% 16
Jan 16/10 cd4 660 vl 54,309 cd% 16
Feb 17/10 Started Atripla
Mar 7/10 cd4 710 vl 1,076 cd% 21
Apr 18/10 cd4 920 vl 268 cd% 28
Jun 19/10 cd4 450 vl 60 cd% 25
Aug 15/10 cd4 680 vl 205 cd% 27
Apr 3/11 cd4 780 vl <40 cd% 30
Jul 17/11 cd4 960 vl <40 cd%33
April 15/12 cd4 1,010 vl <40 cd% 39
April 20/12 Switched to Viramune + Truvada
Aug 2/12 cd4 1040, vl <40, cd% 38
Oct 19 cd4 1,110 vl <40 cd% 41

Offline Jerry71

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Re: HIV Lite
« Reply #28 on: November 29, 2006, 07:32:17 PM »
Tim don't leave the site at least come in from time to time and say hello. After meeting you in Montreal it was an honor finally getting to put a real human being in front of my face and not a damn avatar. Be like the most of us come in say what you want and then come and go as you please. If it was not for you I would never have stayed here as long as I have. :-*

Jerry, Who was glad to have meet Moffie in person at the AMG06.  :'(

Offline StrongGuy

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Re: HIV Lite
« Reply #29 on: November 29, 2006, 07:36:58 PM »
For the record, there's not one part of that statement written by Aupoint that I disagree with. I think you'd be hard pressed to find many who do.

The problem I find from my point (and others I've spoken to who I know would agree) is this all knowing infallible future doomsday or specific degradadtion scenarios some (and I stress some) try to purge onto other newbies (I hate that term, but whateverr) when you are not God.

Experience gives you a well of knowledge, but it doesn't give you all the answers or the ability to predict the future.

I'm just laying it out for those with varying points of who deserve respect, fairness, and a place at the table - not watch people get roasted, or put under inquisition in what I believe is Moffie's pursuit to tightly control how this forum develops and is using this thread un a pathetic attempt to take down people like me, while also looking for a self-esteem boost so he can write in a few weeks how he never intended to leave like he has when he posted his other GBCW diaries.

And someone may wantto enlighten me but I've yet to see old timers (hate that term too) be told to STFU and that we don't want to hear from you. That would be horrible.

New voices and varying opinions make this a better, more representative forum, it is NOT a sign that old timers should wither away and not share their views.

For the life of me, I can't understand why hopeful views and new unique experiences being shared make some feel like they are being pushed out. Change is change and you can't stifle it. Progress toward the future.

Mikey :)
"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

Offline anniebc

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Re: HIV Lite
« Reply #30 on: November 29, 2006, 07:37:32 PM »
Quote
Besides Moffie, who will help with the balance of these forums if you guys (the ancients as you call them) keep leaving?  I for one am lobbying hard to keep you.  I feel your knowledge is immense and your experiences are extremely valuable for us newbies to learn from.  We newbies are heading in your direction and I for one would like to think that when i am an "ancient" I will bitch slap the young whipper snappers into shape just as you do.  Stay!  You're loved more than you know.

I couldn't have said it better myself..thanks AC.

I was diagnosed 4 years ago...for the last 3 years I have been in great shape, but just recently I have started to have some problems regarding my HIV. liver problems, CD numbers have dropped dramatically etc,etc...but it really hasn't come as a great shock to me..why? because I have read and listened to the "old timers" over the years, I never once became complacent about this virus...I agree with what Fearless wrote in his post, we all handle our status in very different ways, but that doesn't mean we shouldn't listen to those who have lived through the terrible times, those who know so much more than we ever will.

Some of us may never go through what the "old timers" went through, some of us may...who knows for sure.
I would like to say to..Moffie, Joe, Lis, Nancy, Rocky, Rod, Matty and all those others who have lived with this bloody virus since the 80's...I hope you will all stay around and help us if or when our time comes.

This is just my personal opinion, so if anyone wants to have a go..then please give it your best shot...because it saddens me no end whenever any of our long term survivers is treated with sure disrespect.

Jan

-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline StrongGuy

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Re: HIV Lite
« Reply #31 on: November 29, 2006, 07:47:27 PM »
Well putting Eldon out to baste was disrespectful.

Respect is earned.  It's not automatically handed out based on the amount of time you live with a virus. We are all accountable for our actions.
« Last Edit: November 29, 2006, 07:50:15 PM by StrongGuy »
"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

Offline Longislander

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Re: HIV Lite
« Reply #32 on: November 29, 2006, 07:55:54 PM »
Jan, I think you are as sweet and cute as pie, so please don't think the following sentence is directed at you personally :)

No one should be disrespected here ( or anywhere else for that matter).

BUT, I have really only witnessed direct disrespect here coming from the oldtimers to the newbies.

Yes, they've been through alot, been through it all, perhaps.  But that doesn't give anyone the right to smash someone else's optimism about their future with HIV.

Tell your stories, warn of possibilities. If someone is having an easy time of things, don't beat them down, call them idiotic, irresponsible morons.

Most all of us keep our appointments, follow or question our doctors advice, and seek information here. If we were completely disregarding our infection, we wouldn't be here.

In 1990, I met my first lover (lasted 7 years). He was 16 years older than I was, so guess what? A good deal of his friends and aquaintences had HIV or AIDS at the time. I did bury friends. I watched some whither down to almost nothing, thinking they may have had only days left, then thankfully bounce back. Most of them are still around. My lover died of cancer 2 years before his best friend died of AIDS. I've been there.

I have no grand illusions about my illness. I spent a good 4 months on my couch last winter after diagnosis, planning my demise in my head. Unfortunately I didn't find AIDSMEDS until this September. It was a Godsend, pony express style!

If it weren't for the ability to come here and see people doing quite well with their medications, and joining in on the optimism they can show me, I don't know that I'd have chosen to stick this life out.

We've all been taught to respect our elders, but respect is a two-way street.

Sincerely,
Paul


infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline poet

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Re: HIV Lite
« Reply #33 on: November 29, 2006, 08:00:18 PM »
Huh? There are people like Queen Akasha, Eric, Win, Fallen Angel, Strong Guy and others who are so offended by my style and my confrontations, that it seems they would love the whole world to be nothing but love and light and for all of us to get along.  Tim, I was diagnosed in 1984.  By 1987 I was working as a home attendant for AIDS patients in their final weeks and months.  When that program ended, I worked for the New York branch of the National Aids Hotline where I, and others, made it a point to answer questions directly and not wait for the CDC to tell us what to say.  I was on the board of the People With Aids Coalition, an organisation formed specifically to counter the party line of GMHC, healthy people telling hiv people what they should do and think.  More recently, I was the only hiv postive and male member of PONY (Prostitutes of New York) working with hiv positive male sex workers, NOT exactly a conversation starter in polite society.  I have never, I hope, encouraged 'love and light' where I thought it nonsense, but, I hope, I have tried to show respect for others with opinions which might differ, right or wrong, with mine.  As long as I saw someone thinking through his or her decisions, I would respect him or her.  If asked, on the other hand, I certainly would insert my thoughts.  I wish you well if you choose to leave the forums.  I wish you an understanding as well that I am not whom you perhaps thought I am.  Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

SFscruff

  • Guest
Re: HIV Lite
« Reply #34 on: November 29, 2006, 08:15:27 PM »
Moffie,

Waah!  You are my higher power in calling what's-his-names bluff.  Your directness is commendable and fully appreciated.  You cut to the chase and say an emphatic NO! when all the sheep are jumping off the cliff!  Check your email inbox...

SF Scruff

Offline ndrew

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  • ....-.-.-.-.-.....
Re: HIV Lite
« Reply #35 on: November 29, 2006, 08:43:26 PM »
I hope you stay, however I don't think the terms "HIV Lite" or "newby", etc. are very productive for a forum that seeks to encourage people affected by HIV/AIDS to seek or offer support.  These could be taken as condescending, self-righteous and immature (and discourage people who may really need to come here).  Let's work together to create a table where everyone- wee sprout or old fart, bitter pessimist or blind optimist, can have a place at the table. 

WHY do you need to welcome one group by the offense of another?

Luv and support,
Drew

Offline Eldon

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Re: HIV Lite
« Reply #36 on: November 29, 2006, 08:46:02 PM »
Hey Moffie65,

It truly is unfortunate that you have decided to take this position of leaving the forums. I do appreciate your effort with the information that you had provided for the Support Group. In fact, that came in handy as it was shared with another member here on the forums.

In this life, it all boils down to perception. How it is perceived by the individual. Based on the individuals perception is generally the factor which assits them with making their decision.

If your perceive that the Chevrolet Truck is better than the Ford Truck...then buy it! It is what you are comfortable with based on your perception. In this life, each and every one has room for improvement or should I say something that will be able to help us along the way on our journey.

Whatever you decision may be, I wish you the BEST in all of your endeavors.

Make the BEST of each Day!

Offline Lis

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Re: HIV Lite
« Reply #37 on: November 29, 2006, 08:59:49 PM »
if eldon wants to think that Tim's thoughts are like having a chevy or a ford... great... but i gotta say.. they both SUCK!  I think that alot of the folks that went through the move to the new site were shell shocked with all of the new people... and not for any reason then it broke EVERYONES heart that there were STILL tons of newly infected people...  you gotta give it to Tim... he does makes you think about all the choices you and I have made.. and it isnt his fault that some of that makes us mad... it all is in our hands.. Oh, and i want a BMW...
poz 1986....

Offline Eldon

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Re: HIV Lite
« Reply #38 on: November 29, 2006, 09:02:30 PM »
Hey Lis,

LOL! It better be a convertible!


Take care!

Offline Longislander

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Re: HIV Lite
« Reply #39 on: November 29, 2006, 09:09:25 PM »
I've spent plenty of time , and I'm sure everyone else here has, thinking about the mistake I made. I don't need it reinforced. Thank you.
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline anniebc

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Re: HIV Lite
« Reply #40 on: November 29, 2006, 09:18:15 PM »
StrongGuy I agree, respect has to be earned..and I know there has been a fair amount of disrespect between the "old timers' and the "newbies" of late, and hopefully this can be resovled by understanding that each and everyone of us really do handle HIV differently.. but I didn't mean that the long term survivers deserve more respect only because of the time they have spent living with this virus but more for their knowledge and insight regarding HIV..sorry I should have made that clearer.

Paul When I come in here (just about everyday) I love to read how well people are doing, the new and not so new, nothing brightens my day more, because you are right, it gives us hope and that's something we all need...and I believe the "long terms survivers" have given us that as well, just by being here.

There is a line in the Desiderata that reads:

Speak your truth quietly and clearly, and listen to others, they too have their story...this should apply to everyone.

I never was very good with the written word and in my clumbsy way I was just trying to say we should listen to those who have lived with this virus longer than we have...I wasn't trying to take away the optimism of those who are dealing well with it..I have respect for them all and I rely on both sides, I need those who inspire me and keep me going with their wonderful attitude and optimism, but I also need those who have lived for so long with virus to prepare me if things go belly up....I hope you can understand what it is I'm trying to say, I really do suck at the written word, I'm a face to face person, it's easier to explain things that way , at least for me it is.

Edited to add:...Lis if you get a BMW convertable I want to be in there with you..somehow Thelma and Loise springs to mind... :D

Hugs to you both
Jan :-*

« Last Edit: November 29, 2006, 09:22:22 PM by anniebc »
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline aupointillimite

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Re: HIV Lite
« Reply #41 on: November 29, 2006, 09:25:13 PM »
Jan, I completely agree with you...

I may sound naive, but if everyone would just listen to each other as individuals with HIV/AIDS, instead of as "newbie" or "oldie" or whatever the hell we're calling ourselves, maybe things would be a lot better.

We can't ask the world to deal with its HIV stigma when we can't get past stigmatizing each other based on how long we've been living with this virus.
Your tastebuds can't repel flavor of this magnitude!

Offline Eldon

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Re: HIV Lite
« Reply #42 on: November 29, 2006, 09:28:50 PM »
Hey Jan and Aupoint,


We are all in this together. Agreed.




Take care of YOU!
« Last Edit: November 29, 2006, 10:28:18 PM by Eldon »

Offline Longislander

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Re: HIV Lite
« Reply #43 on: November 29, 2006, 09:37:09 PM »
Jan, I don't think you could suck at anything. :D

( and I WON"T be gross here..)
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline thunter34

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Re: HIV Lite
« Reply #44 on: November 29, 2006, 09:39:46 PM »
I know.  For real.  I'll bet everyone on here would agree that Jan rocks...and you ain't so bad either, Paul.
AIDS isn't for sissies.

Offline Life

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Re: HIV Lite
« Reply #45 on: November 29, 2006, 09:43:55 PM »
I talked with Tim the second he posted – Tim is, and will always be someone I trust and listen to and call “friend”.  I listen to you all.   My battle is not with you, my battle is living with HIV.   This is my enemy, this is my foe…  I hate everything it represents.




 Make no mistake about it…. If I cant come here and feel safe, where can I go?

Ok I said it… 

Offline skeebo1969

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Re: HIV Lite
« Reply #46 on: November 29, 2006, 09:46:44 PM »


   Damn Eric for a minute there I thought that was a Picasso! ;)
I despise the song Love is in the Air, you should too.

Offline MSPspud

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Re: HIV Lite
« Reply #47 on: November 29, 2006, 09:54:00 PM »
Wow, is it just me or has this thread facilitated a decent discussion.  Some fighting aside, not bad. 

See Moff, you have a nac for bring this out.

PS.  Jan totally rocks.

Offline Jeffreyj

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Re: HIV Lite
« Reply #48 on: November 29, 2006, 09:57:02 PM »
Maybe this is over simplifying it, but for God's sake, WE ALL HAVE HIV. It's not lite, its not new. It's not old. It is HIV. Period.

I care about each and every one of us. We all have our own views and it effects us all at different times in our lives.

In 1984 I told my DR to fuck off after he told me I was going to die and there was no cure.

I used to think HIV was manageable. I worked for 18 years with it. I managed it for 18 years, until I got ill from KS and neuropathy.

So maybe now it manages me.   THINGS CHANGE. So what the fuck is the big deal?  It's my reality, take it or leave it, but learn from it if you so choose.

And as things change, we all need to be there for each other.  Debate is a good thing. It's how we learn and become better people.

I for one, love the fact we disagree. How boring would it be if we all agreed with each other?

This is a support group. These personal attacks do no good, and are a waist of time.

I am on the "last" cocktail. And guess what?

I'm happy to be here today. I am so very grateful for each day. I appreciate life, and would encourage us all to do the same. All of this pissing on each other is a waist of time.

Grow up people, HIV is bigger than any one of us. And check your ego  at the door.
Positive since 1985

Offline thunter34

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Re: HIV Lite
« Reply #49 on: November 29, 2006, 10:04:42 PM »
Wow, is it just me or has this thread facilitated a decent discussion.  Some fighting aside, not bad.

Yeah...no kidding.  Like a phoenix rising from the flames.  Hurray!
AIDS isn't for sissies.

Offline RevMC

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Re: HIV Lite
« Reply #50 on: November 29, 2006, 10:39:18 PM »
I'm fairly new to this site and have met some wonderful people.

I'm going to do a combination, comment about this thread and give info about me.  Double whammy!!  Sorry, but it turned out to be a longer post.

I've been HIV+ for 18 1/2 years, March 2 will make it 19 years, WOW, I'm an old timer I guess.  I got tired of going to support groups because all they did was tell you that you were going to die . . . WELL surprise, we ALL die sooner or later.  No ifs, ands or buts about it.  I just got tired of having it crammed down my throat.  I wanted to learn how to live with this.  I was already prepared to die, still am.  Though my counts are considered low, my body has been able to keep the virus in check.  Hell, I rarely get sick, not even the flu.

I like Eldon, have a positive attitude and try to help others to cheer up.  I post Love and Light on all my messages.  Why???  Because sending Love out to someone makes some people feel good, sending Light, is similar to sending prayers to others.

I am an ordained non-denominational minister and offer Love and Light to everyone.  Light for me is healing energy sent from god.  I am a Reiki Master/Teacher, Psychic/Medium, etc. . .  No matter how bad things seem to be I try to have a positive attitude.  Someone somewhere is having a rougher time than you are.

I too have fought the system.  I was unhappy 17 years ago with the local health department so I reported them to the CDC.  A friend of mine who worked there asked me what I did and I asked him why?  Doctors, nurses, etc. . . were being fired left and right and all patient records were being examined.  I had polycythemia vera which if left untreated would have killed me.  They didn't care about that at all so I did something.  I went to congress and spoke face to face with many of our representatives all those years ago. I tried running for mayor of Providence, RI openly gay, openly HIV+.

So after all these years of being poz, I too am an old timer.  I will support and stand behind anyone who has a positive attitude, there is enough gloom and doom in everyone's everyday lives.

HIV/AIDS is no longer the death sentance that it was in the beginning.   Though there are a LOT of problems and issues with HIV/AIDS, it is treatable and liveable.  We all know that sooner or later we all will have comblications from HIV/AIDS  Though we have fought and continue to fight, having some of us old timers on here who have dealt with this since the beginning IS proof in and of itself that HIV/AIDS is no longer a death sentance.

Some newly diagnosed people need our input, good and bad in order to continue surviving this disease.  If people feel that they are going to die from this disease, and it keeps getting crammed down their throat, they will think that there is no hope of living a semi-normal life.  They will believe that they are going to die soon and they will die.

Since being diagnosed 18 1/2 years ago I have accomplished the following:  became a licensed hairstylist, owned my own business, earned my AA degree in Computer Information Systems and have 1 year to go for my BA degree, became an ordained non-denominational minister, have 2 websites, am a caregiver to my life partner/soul mate of almost 10 years.  I've had some great relationships, and some not so great ones too.  All this after being told 18 1/2 years ago that I had about 2 years to live if I was lucky.

I for one would hate to see you leave, it's through your years of experience that newly diagnosed people will understand the difficulties that life has to throw at us.  Please don't let my positive attitude, or anyone elses force you to leave.

I'm sorry for a long post, but wanted to give you an idea of who I am as a positive (in more ways than one) person.

Love and Light,

Rev. Michael
Part of my story: "Sale Of A Lifetime" POZ December 2003
http://www.poz.com/articles/172_752.shtml

Started on Truvada and Viramune on 2/15/07

Jan 8, 2007   t-cells 215  Viral Load 10,000  24%
March 26'th  T-cells 306   Viral Load  UNDETECTABLE
June 2007 t-cells 375 Viral Load UNDETECTABLE
August 2007 t-cells 290 Viral Load UNDETECTABLE



Love and Light and Reiki sent your way,
Rev. Michae

Offline Eldon

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Re: HIV Lite
« Reply #51 on: November 29, 2006, 10:49:58 PM »

I like Eldon, have a positive attitude and try to help others to cheer up.  I post Love and Light on all my messages.  Why???  Because sending Love out to someone makes some people feel good, sending Light, is similar to sending prayers to others.

I am an ordained non-denominational minister and offer Love and Light to everyone.  Light for me is healing energy sent from god.  I am a Reiki Master/Teacher, Psychic/Medium, etc. . .  No matter how bad things seem to be I try to have a positive attitude.  Someone somewhere is having a rougher time than you are.

So after all these years of being poz, I too am an old timer.  I will support and stand behind anyone who has a positive attitude, there is enough gloom and doom in everyone's everyday lives.


Love and Light,

Rev. Michael


AMEN!!!


Make the BEST of each Day!

Offline Jeff64

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Re: HIV Lite
« Reply #52 on: November 29, 2006, 11:01:39 PM »
Tim,
I rarely post here. I read alot though.

What I do not understand is why you want to go just because somebody does not want to take your advice. I would have offed myself with all the times people didn't follow mine!

I admire everyone's opinion here. I amy not agree with everything, but at least the folks were bold enough to have an opinion.

I am a "newbie" as you call it and so far I have not had to go on meds, require financial assistance, had workplace issues, etc.
Just living my life and doing what I think is the right things to do to say as healthy as I can...what more can I do than that? NOTHING!

When the time comes I must start meds, I will do what my very good and nice ID Doc says.  She tells me I will probably die of old age before I die of AIDS. I like it when she says that.

Apparently things have changed since the 80's...

Jeff

Offline HIVworker

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  • HIV researcher
Re: HIV Lite
« Reply #53 on: November 29, 2006, 11:24:07 PM »
I said this in another thread, and I would like to say it here again.

Moffie is making a valid point. There HAVE been advances in HIV treatment but it is still not something to be taken lightly. Moffie casts a doubtful eye at doctors and the medical industry because, unlike people who are newly infected, he has had 25 years of "A new cure" and "Normal life" sort of comments.

He has likely heard "A new hope" stories for 25 years.

Yet here we are. 25 years after the start of the realization of HIV and people are still struggling to cope with HIV infection. Still struggling to tell people and not be treated like an outcast. True, things have got better and could get better still. But just because Moffie says that HIV is still no walk in the park, despite claims in the media, I don't believe he wants to bring people down. I believe he is giving his opinion based on 25 years of living with the disease.

For me that counts for something and I hope he comes back. I can understand the frustration of someone who knows about living with HIV to be told it is a manageable disease. As much as it would be for me (a HIV negative person) to tell you the same.

I believe Moffie has a wealth of experience and although I don't always agree with him, I don't believe I have ever said he is wrong. I might have studied HIV for years, but his experience trumps most of that.

I will have the respect and listen to him.

Moffie, please come back.

Rich
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 AlanBama

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Re: HIV Lite
« Reply #54 on: November 30, 2006, 08:22:26 AM »
Tim,

Don't you dare go anywhere, we need you around here.   I need you.   I need to know that I am not alone in being a 20-year survivor of this nightmare.   Sure, our experiences are WAY different from the more newly diagnosed; doesn't make either one right or wrong, just the way it is.

You and I played the hand we were dealt back in the 80's, and went on AZT monotherapy and lived with all the trauma that created.    People diagnosed in the 00's are playing the had they were dealt, they just have better tools to work with.   We're all on the same journey, just taking different paths to get to the end.

I think everyone would agree that I try to stay upbeat and positive in my posting, but some of us need a reality check.  No one can be a 'cheerleader' and "UP" all the time, I'm sorry.   I tend to be distrustful of people like that, I always have.   Maybe that's a character flaw of mine, but I normally trust my instincts.   You trust your instincts too, we learned that YEARS ago.   We know what we know.

Love you,

Alan
"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 sweetasmeli

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Re: HIV Lite
« Reply #55 on: November 30, 2006, 08:43:15 AM »
I have not actually seen Tim disrespected in this thread. I have just seen other people reacting to his comments, sharing their experiences and expressing their opinion, that sometimes happen to clash with his. People do listen to Tim and other ‘old-timers’. But it doesn’t mean we have to accept everything they have to say as golden or set in stone. And they, in turn, should return that courtesy and listen to what us ‘newbies’ have to say, without lumping us all under one umbrella with a label such as ‘HIV Lite’. I certainly don’t view my own experience so far of living with HIV as being any lighter or heavier than anyone else’s. It’s just my experience.

Admittedly I have not read every post ever written on Aidsmeds but I have never once seen anyone here equate HIV to an Excedrin headache and I doubt I ever will. The members who are no longer posting here are no longer posting for their own reasons. No one has forced anyone into anything. They are choosing not to post.

Tim, I hope you already know that I think a lot of you and have much respect for the battles you have come through, the wealth of advice and information you provide here and the work that you do in HIV/AIDS activism. But that respect didn’t just come automatically simply because you’re older than me or because you have been living with HIV/AIDS for 20+ years; it came over time as I read your posts and your blogs and gradually got to know and like you, as much as one can get to know someone through cyberspace that is.

I have to say though, I take exception at how some ‘old-timers’ tend to lump together all us ‘newbies’ (2 terms I too am not so keen on…talk about automatic division!) as though we ‘newbies’ know nothing real about living with HIV. True enough we haven’t been struggling for 20+ years, we may not have watched hundreds die and many of us have not battled with cocktails of drugs, that have and in fact could still be harming us just as effectively as the virus itself. I for one feel thankful for that but equally sad for the ones who have. But just because we haven’t lived it doesn’t mean we don’t have sympathy or empathy or compassion or understanding. I may not have lived through it but I'm fully aware it happened and I'm aware it is still happening in places.
 
Strangely enough I said the exact same thing to Ann yesterday as QA dared to say here – sometimes I get the feeling that our opinions about living with HIV don’t count for shit because we haven’t been in the game long enough. Well, that’s not fair and that’s not right. We may not have been living with it as long and we may not have lived through the horrors that the ‘old-timers’ have, but it doesn’t mean our struggle is any less difficult, real or significant. And it doesn’t mean we don’t have the same or similar fears, frustrations and/or hopes.

I also struggle to see the point of continually rehashing the whole argument about whether HIV is a chronic manageable disease or a terminal one. It’s an argument that will never be agreed on. Just from the people on the forums I see a whole mixture of experiences of living with HIV. Some appear to be managing, whereas some are not. I am fully aware that for many in various parts of the world, for various reasons, it is indeed still terminal. But I am also aware that for many others, again for various reasons, it is highly likely in this day and age and for the foreseeable future that it is not. If I turn out to be wrong, well, at least I will have gone down fighting. 

Many people have died from AIDS. Many people are still dying from it. But many people are now living with it too by managing to turn their numbers around. And I believe that many people will go on to live with it without actually developing AIDS. I have to believe that.

Otherwise, if we are all indeed doomed as some people seem dead set on believing and accepting, we may as well change the name of this forum to Dying With HIV.

I am not delusional. I am fully aware that there is a possibility that, against all my wishes, I may have to give in to meds at some point down the line and I am fully aware that if I don’t or if they don’t work, I may go on to develop and die from AIDS. And yes, that terrifies me and pisses me off to the very core.

The bittersweet beauty of a forum like this – filled with a myriad of ‘old-timers’ and ‘newbies’ living with this same awful disease – is that every single one of you gets how difficult and bloody terrifying the realisation and acceptance of those awful possibilities is for me.

Andy said he wasn’t clear what Tim wants people to do differently here. I may be wrong but I get the impression that Tim wants everyone with HIV to agree with his opinion that they are or eventually will be dying from AIDS. Well, I’m sorry Tim. If that’s the case, as much as I respect you, I don’t, won’t and can’t agree with you on this one.

The day of my first meeting with my HIV consultant – New Years Eve 2002, the day after my diagnosis – my doctor (Ann’s wonderful Wizard of Poz, no less) asked me if I had a pension. When I told him no, he told me to go out and get one. I remember, once I realised what he was actually saying, bursting into tears of relief. It’s the one memory from that day that sticks in my mind, especially when I’m struggling to climb out of life’s many deep black holes. I cling onto that memory by the skin of my teeth.

Ann said something to me yesterday that I had actually been thinking myself earlier on: Life itself is terminal. But I will not give in to what is actually the certainty of death without a fight. And I will fight it in my own way, in a way that suits me. It’s everyone’s right to choose how he or she views and lives their life, just as it’s their right to choose how to view and die their death, whenever possible.

All of us here are united in having a more difficult and challenging fight to prolong what life we have. We will never all agree on everything. But the one thing we will always have in common is HIV. I for one want, need and appreciate the advice, opinions and information that the ‘old-timers’ bring to these forums. But on the same par, I want, need and appreciate the advice, opinions and information that the ‘newbies’ bring here too.

More than anything, I need hope, from wherever and whoever it may come.
I may be wrong but I’m guessing that all of us do.

Always with respect
Melia
/\___/\       /\__/\
(=' . '=)    (=' . '=)
(,,,_ ,,,)/   (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

Yeia kai hara (health and happiness) to everyone!

Offline DanielMark

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Re: HIV Lite
« Reply #56 on: November 30, 2006, 09:42:20 AM »
Bless you Melia for your post this morning.

So much of what you have written expresses better than I'm able to precisely my own thoughts on things. This most of all:

Quote
Life itself is terminal. But I will not give in to what is actually the certainty of death without a fight. And I will fight it in my own way, in a way that suits me. It’s everyone’s right to choose how he or she views and lives their life, just as it’s their right to choose how to view and die their death, whenever possible.

All of us here are united in having a more difficult and challenging fight to prolong what life we have. We will never all agree on everything. But the one thing we will always have in common is HIV. I for one want, need and appreciate the advice, opinions and information that the ‘old-timers’ bring to these forums. But on the same par, I want, need and appreciate the advice, opinions and information that the ‘newbies’ bring here too
.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline kcmetroman

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Re: HIV Lite
« Reply #57 on: November 30, 2006, 09:47:14 AM »
For fear of getting blasted, I will be brief.  I have said this before that as an "HIV Educator,"  this type of approach could be devastating to the newly diagnosed.  I thank my lucky stars that I was NOT diagnosed in southern Arizona.   Instead, I have hopes for my future.  I do not toss aside advice from veterans, but I am responsible for my own well being, not anybody else. 

When the smoke settles, we all have to make decisions for ourselves.

Offline LatinAlexander

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  • Bogota, Colombia
Re: HIV Lite
« Reply #58 on: November 30, 2006, 09:47:45 AM »
mmmm...

Just thinking....

When I was diagnosed, barely 4 months ago, I was afraid. I still am. Many days, I simply keepp on thinking on HIV. An the problems associated to it: MEds, work, personal relationships, when will I get sick, what will I do, how my life will be.

And in those moments, I need help. Not only the great help of nice words (which are great), but also, the reality check of the old timers. I am thankful to them, because, like parents, they have walked tis road, and they know what they are talking about.

I am a newbie. But I will never get to old-timer if I do not at least, hear what the old-timers have to say. I was taught to respect my elders, not because of their age, but for their life experience, and what you can learn from them.

TIM: DO NOT GO! WE (newbies and all of us), need a wise voice. Specialy when we are being non-realistic

Alex

Poz since Jul 19 2006
Initial numbers : CD4-250 VL 3500
First labs after HAART (Dec 04-2006) : CD4-432 VL-<40 (Undetectable)  cd4%=25.11%
Started HAART: Combivir+Efavirenz Aug 26 7:38 pm
Feb 08 2007 - Gradually stopping HAART cause of Myalgia. Protecting Efavirenz. Stopped Efavirenz, ahead with Combivir....
February 17 Combivir stopped.
April 3 -07 : Started ddi+3tc+efavirenz...
Gay and positive (What a lack of Identity...:) )
Looking for my Ben....

Offline ACinKC

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Re: HIV Lite
« Reply #59 on: November 30, 2006, 09:49:56 AM »
Melia.... that was PERFECT girlfriend!!!  You yourself are a godsend!!!
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 allopathicholistic

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Re: HIV Lite
« Reply #60 on: November 30, 2006, 10:09:53 AM »
As long as I saw someone thinking through his or her decisions, I would respect him or her.

With that in mind, let me begin with a mea culpa: I have doled out advice in these forums without "thinking through" first - Specifically, concerning clinical depression - An area I know almost nothing about. This is the kind of stuff MoffieTim has beef with, if I'm reading his post correctly. His post made me aware of my own actions and in it he makes some interesting points, along with killfoile Joe.

When it comes advice, I now know I (and all of us) really should think things through before hitting the post button. I think that was the core (or close to the core) of the original post.

Alex
« Last Edit: November 30, 2006, 10:20:53 AM by allopathicholistic »

Offline Moffie65

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Re: HIV Lite
« Reply #61 on: November 30, 2006, 10:22:24 AM »
Two thoughts;

1. the last post lets me know that one of you "got it".

2. This is a support forum and only two of you on this thread who already know the answer to this question are excluded from this observation, but with all the answsers, keystrokes and reads; not one of you bothered to inquire with the author just how he was doing or feeling today...............

'nuf said.
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 NycJoe

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Re: HIV Lite
« Reply #62 on: November 30, 2006, 10:44:27 AM »
I have no time for yet another I'm leaving the forums forever thread and yet here I am.  Its always  an attention getter.  Its dramatic.  Yet they always come back. They know they will get dozens begging them to stay and telling them how much they are loved.  So why don't we get past the "I'm leaving forever"! shtick and just say I'm taking a break.  Its always healthy to take a break from here.  I belong to support groups that I dont always agree with but I definitely learn something from them. Its okay to disagree.  Its not always all about  "me".  Its about us.  Its about HIV and not a single one of us has the edge on it.  Health to all.

Offline gerry

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Re: HIV Lite
« Reply #63 on: November 30, 2006, 11:14:20 AM »
Hi Tim,

I was talking to another forum member last night wondering how you were doing with your meds, remembering that you mentioned some time ago that your viral load had broken through.  I also chanced upon your last blog entry and came to the realization that you are not in a very good place right now, both physically and with the even more scary brain fog.  And neither of these challenges that you are dealing with have any real answers or solutions.  That makes it even more scary.  It just occurred to me now that the things you have posted are personal accounts of what's happening to you; the struggles and all for the past 23 years!  And instead of relating it as such (which you made a point in the past as something you are not really comfortable doing), you craft it into an advice, talking point, teaching point, rebuttal or whatever one might perceive it.

I hope things get better for you, Tim, I really do.

Gerry

« Last Edit: November 30, 2006, 10:11:40 PM by gerry »

Offline thunter34

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  • His name is Carl.
Re: HIV Lite
« Reply #64 on: November 30, 2006, 11:33:53 AM »
This thread seems to be moving in a good direction overall.  I don't want to mess with that, but I have to add this because it really gets to me:  I absolutely hate being referred to as the "undead".  It makes me feel like a zombie, a monster.  Oddly, it comes off as far more stigmatic than anything I have yet gotten from the non-positive population.

It never occured to me to inquire how Moffie was doing since I took him at his word and assumed he had already said his goodbye.  I really, truly, most sincerely wish him good health and happiness.  I've been reading through the back catalogue of his posts, and it is quite clear he has a vast wealth of knowledge to offer.

Highest, highest honors to Melia for her superb addition to this thread.  That post alone could stand as a testament to the value of the 'newbie' voice, and this thread alone is testament to the need for both.
AIDS isn't for sissies.

Offline Boo Radley

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Re: HIV Lite
« Reply #65 on: November 30, 2006, 01:50:47 PM »
Two thoughts;

1. the last post lets me know that one of you "got it".

2. This is a support forum and only two of you on this thread who already know the answer to this question are excluded from this observation, but with all the answsers, keystrokes and reads; not one of you bothered to inquire with the author just how he was doing or feeling today...............

'nuf said.

Enough said, indeed.  Your last post changed my outlook entirely.  Your dismissal of every response save one is a slap in the face to many of the people who posted.

1.  I apologize for wasting your time with a response that didn't meet your requirements. 

2.  I don't recall ever seeing anyone, including you, post the specific question "How are you doing/feeling today?"  Lots of "Hope things go well" and "Hope you get better soon" and such but not a direct question, which would seem more suitable for a PM. 

I don't read blogs because they are, to me, about as interesting as someone else's diary so I must apologize again for not being au courant in regard to your health issues. 

Tim, I sincerely wish you the best but if you stop posting it's your decision and yours alone.  I won't take up more of your time trying to discourage you.

Boo
String up every aristocrat!
Out with the priests and let them live on their fat!





Everything I do, say, think, excrete, secrete, exude, ooze, or write © 2007 Sweet Old Boo, Inc.

Offline ndrew

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  • ....-.-.-.-.-.....
Re: HIV Lite
« Reply #66 on: November 30, 2006, 05:19:09 PM »
I don't think ANYONE on here takes their infection lightly.  I don't know what HIV Lite is, but I wish it were true.  I am thankful for every fucking day I have and I WORK my ass off to be healthy and successful.  The recently infected don't have the LUXURY of years of coping, it's FUCKING TOUGH for them psychologically.  THEY NEED YOUR MATURITY AND RESPECT, not attitude from an IVORY TOWER, SIR ACTIVIST.  THEY NEED YOUR SUPPORT.

Perhaps we can quantify what constitutes "new by" and "old timer" or quit fucking WASTING time with rhetorical SELF-SERVING BULLSHIT.  AHHHH!!!

Is someone who is newly diagnosed, who happens to be over 50 a newby or an old timer?  Is someone who LIVED through AIDS in the 80s, but was infected recently, but lost friends and loved ones a newby or an old timer.  WHAT THE FUCK!!!  AHHHHHH!!!

No one has asked in a thread randomly how I am doing, but when I need support I post and when I feel I can give, I give of my heart.  LET'S GET IT TOGETHER!!!

Moffie65, perhaps it is time for you to reach out to all of these "newbies" and start cultivating relationships if you feel insecure that your "old timer" friends have gone.  Maybe then it would be a sweet spot that would entice them back...  AND THEN MAYBE YOU CAN REVIEW OLD POSTS AND SEE HOW PEOPLE HAVE CARED AND SUPPORTED YOU.

WHEN ARE YOU GONNA GET IT??????

AHHHHHH!!!!!!!!!

as;dlkfjas;ldkfj;lksjadf;lkasjdfpoqiwuertpoiqwueropqwieur (sorry just some WASTED keystrokes.)

DREW

Offline Eldon

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Re: HIV Lite
« Reply #67 on: November 30, 2006, 06:18:32 PM »


Perhaps we can quantify what constitutes "new by" and "old timer" or quit fucking WASTING time with rhetorical SELF-SERVING BULLSHIT.  AHHHH!!!

WHEN ARE YOU GONNA GET IT??????

AHHHHHH!!!!!!!!!

as;dlkfjas;ldkfj;lksjadf;lkasjdfpoqiwuertpoiqwueropqwieur (sorry just some WASTED keystrokes.)

DREW

Let the newbies say...AMEN!!!

Offline Cliff

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Re: HIV Lite
« Reply #68 on: November 30, 2006, 06:37:53 PM »
I wish we would move beyond newbie versus oldie and manageable versus unmanageable.  They serve no purpose but to divide us.

Perhaps we need one of those cheesy, HIV campaigns to remind us that...




Offline RevMC

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Re: HIV Lite
« Reply #69 on: November 30, 2006, 07:31:48 PM »
Tim,

I'm so glad you are still with us here.  I'm sorry I haven't had a chance to see your blog, or anyone elses at this time.  It's been crazy with everything I'm going through.

I'll have to make a point of checking the blogs out, especially yours.  I see from some of the posts that you are dealing with some issues. 

How are you doing?  Anything any of us can help you with?

Love and Light,

Rev. Michael
Part of my story: "Sale Of A Lifetime" POZ December 2003
http://www.poz.com/articles/172_752.shtml

Started on Truvada and Viramune on 2/15/07

Jan 8, 2007   t-cells 215  Viral Load 10,000  24%
March 26'th  T-cells 306   Viral Load  UNDETECTABLE
June 2007 t-cells 375 Viral Load UNDETECTABLE
August 2007 t-cells 290 Viral Load UNDETECTABLE



Love and Light and Reiki sent your way,
Rev. Michae

Offline Life

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  • Member 2005
Re: HIV Lite
« Reply #70 on: November 30, 2006, 07:56:47 PM »
Tim, What can I say?  What can I do?   I can only hope that things will become clear for you.  There so many here who care about you...  You are part of such a beautiful family.   The prayers for you to return to better health, the clarity of thought, are certainly being uttered....   

http://blogs.poz.com/tim/
« Last Edit: November 30, 2006, 08:59:02 PM by Eric »

Offline Amosboy

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  • Posts: 156
  • Music is the panacea.
Re: HIV Lite
« Reply #71 on: November 30, 2006, 10:20:48 PM »
(Moffie)

I am relatively new to this forum but not to living with HIV (20 years and going).  I will try to address your departure in some sort of personal way, though I am not quite sure I'm qualified to do so, since this is only the second post of yours I've read.  The first one was your "re-emergence" and "call to the ancients" post.  I do not like to see anyone suffer, whether it is you or someone you have disagreed with.

I starting poking around here in hopes of making some new friends, learning about myself and others, and to hopefully find some real intimacy with others.  I am left to think that perhaps it is going to take more than just sharing an illness to make that happen.  I am quite sure that you have real feelings and that you are not afraid to put things on the table.  This is most obvious by the tremendous amount of responses that your post elicited.  Perhaps, this was a brilliant device to encourage real intimacy, real emotions, and real truths from the people who take the time to read and write here.  Or perhaps, this was some way to stir up a pot that has boiled over before.  Either way, it saddens me that the offering you presented was sort of sterile and matter of fact. 

And what of all of the labels, "Ancients", "Newbies", "HIV Lite", etc?  At 40 and just getting comfortable with the whole HIV exchange on this forum, I have come across a completely new set of separatist labels to make me squirm, not unlike the names I encountered in high school which were equally unnerving.

What is truly motivating this latest post?  Are you really opposed to letting people evolve at their own pace in dealing with HIV?  Every person here is unique, and I don't think for a minute that anyone here is immune to pain, even if they will not acknowledge it or it comes out in anger or "knee-jerk" rebuttals.  The real reward here is not how many people you affect in your posts or blogs, but how comfortable a person feels in delivering their own way of "LIVING WITH HIV".

I do not like confrontation and I think it is a cancer of the spirit.  However, if presenting with an uncomfortable situation that just will not go away, I will deal and learn from the interaction.  I'd rather jump in the middle of a storm for five minutes than spend a week dodging lightning bolts.  I am a person first and I do what I have to survive, not only living with HIV but just freeking living.  My life is not just about being HIV positive and it's going to take more than just sharing my experience of that fact to make friends here.  That much I've decided. 

I did think that if other people were willing to let go of such a personal thing as being HIV positive, that I would have a chance of finding that intimacy that I so desire from other human beings.  I feel like just walking away from something that is so (obviously) important to you is sort of a battle that you are willing to just go ahead and loose.  Just from what I have read throughout this thread, you are certainly a strong personality.  People can agree with you or not.  That is for them to decide.

You are either truly brilliant or really tired of the fight that gives you the real strength to survive.  I can't really decide.  Either way, you have impacted how I choose to communicate on this forum.  I don't know you but I'd be happy to listen to your views openly, if you can do the same for me.

Facts can never truly be separated from emotion.  If you want to know more, just ask.  I'll try to communicate from a place of respect and truth.

Brooks
"Love isn't love unless it's not painfully absurb."

-Charlotte Martin

Offline skeebo1969

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Re: HIV Lite
« Reply #72 on: December 01, 2006, 01:33:28 AM »


   Moffie,

       I was thinking about you at the clinic today.   I've only been infected since April 9 2005.   Not diagnosed, but infected....  my virus is young and so am I.  Thirty-eight to be exact!   The nurse at the clinic thinks I have been positive longer.   I just pulled out my negative results from January 05 (from a physical) and the test the hospital did when I was in there duing my seroconversion April 30, 2005 also negative.

      Ok, technically I am new to this, but still need your help!  See my virus seems to not be as lite as the others have.  You know the ones who keep saying your painting a doom and gloom picture.   Nope my virus is not like theirs.. it must be an old one.  Maybe one from the eighties I think.  See here's the problem I am starting to walk a road I was told I would not walk, albeit with a limp.   I am even forced to apply for disabilty by a judge for  christ's sake!   Because my cd4s are 70 below the magical 200 mark I am told I now have an AIDS diagnosis.   My doctor examined things today in away I never was examined before......  It is different.... But yet I was told I would not see this...  An AIDS diagnosis...   Hmmm..  The bravado is still here though moffie, I would have been the greatest gun slinger in the Old West.  Maybe this will help me remain confident of my return to the HIV lite ranks.   Sorry I did not ask how you were feeling.

   Thomas
I despise the song Love is in the Air, you should too.

Offline DanielMark

  • Member
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Re: HIV Lite
« Reply #73 on: December 01, 2006, 06:05:26 AM »
Quote
I am a person first and I do what I have to survive, not only living with HIV but just freeking living.  My life is not just about being HIV positive and it's going to take more than just sharing my experience of that fact to make friends here.  That much I've decided.

Amen to that, Brooks!

I may be living with HIV, but I refuse to allow it to dominate my entire life. Like an unwanted house guest, I will coexist with it, but it will not rule me.

I am a man who is Gay and living with HIV ... in that order.
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: HIV Lite
« Reply #74 on: December 01, 2006, 09:51:50 AM »
 I have been thinking about this thread for two days now.

Tim, I have been worrying about you. I know things haven't been going smoothly for you of late. I wondered whether that might have prompted this thread.

I value your experience because I haven't any in many of the realms you have traversed, even though we both have had this bug for more than two decades.

I also know that without hope, there is no future for any of us.

I don't want life with HIV to be presented as some sugar-coated walk in the park. It isn't.

But, I also don't want to rob anyone, including myself, of the hope the future needn't be all gloom and doom, that it is possible to live a productive, full life with this bug.

Such a life may not be possible for everyone, Nor, I fear, will it last until they scatter my ashes to the four winds. That isn't realistic.

But between now and the time when things do go sour - whether from HIV itself, from the meds I have taken for a decade to fight it, or from pending old age - I live each day as though it were my last .

I see the gloom and doom every day. I see people every day who are suffering, for whom this isn't a "chronic, manageable disease." I hate that term because it does make it sound like an Excedrin headache.

But I also see their hope, their strength, their will to keep fighting, even if, at times, if it is out of sheer desperation.

At the same time, I have learned to quietly accept their resolve when they have decided enough is enough and have given up the fight and await the final outcome.

That is what life is all about.

I won't give up hope, for myself or others. But I accept the harsh realities of life as well.

So, maybe that makes me somewhat Pollyannaish. I don't know.

HUGS,

Mark
« Last Edit: December 01, 2006, 09:56:23 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Queen Tokelove

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  • Smokey the Smurf
Re: HIV Lite
« Reply #75 on: December 01, 2006, 03:44:28 PM »
I agree with Thunter, that this thread has taken a turn for the better. What started out as a negative situation has produced some positive results:

1. We have gotten to know Eldon as a person now.

2. I was made aware of someone's personal issues that they are dealing with which in turn may explain that person's attitude but still must say I disagree with the things that were said.

3. Hopefully, it has shown us, old timers and newbies, how the other feels and that we both are valuable to each other and both deserve respect.

Melia~~ I couldn't have put it better, you have a way with words....

Moffie and Thomas~~

I would hate to see you leave, just because we have a difference of opinion does not mean we can not be civil towards each other. I don't hold grudges, do you? Despite this one incident, I still have mad respect for you. I have read your posts since I started coming here, some things I get and some I don't. You can be a help to many including myself.

I hate that both of you are having such issues with your health, I do not trivialize it. If you both still feel dark about your health issues, I have enough positive vibes and light, you don't have to worry, I will be positive for you both. It sure can't hurt, can it?

Disability is there to help, I don't consider it a handout. Believe me, I would prefer to work but my doctor thinks otherwise. But I do agree, there are those that do abuse the system. But there are those like me who would be homeless w/o it.


(who has enough hope for us all)
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 skeebo1969

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  • Posts: 5,707
Re: HIV Lite
« Reply #76 on: December 01, 2006, 04:25:30 PM »


   No Queen I don't hold grudges.   I admitedly get angry sometimes.  I can be outspoken.   I am sarcastic like a mother fucker and have been likend to some guy called Becker.. some show on TV.

   Like I know you are, I am a good person.  Let's face it even good people can disagree.

   There is only one thing... OK two things I will never ever forgive you for:

    1. You are a Cowboys fan
    2. The Marino comment

   Everything else is cool...   As they say where I'm from "Two tears in a bucket, FUCK IT!!"

    Sincerely,

    Thomas
I despise the song Love is in the Air, you should too.

Offline gerry

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  • Joined AM Feb 2003
Re: HIV Lite
« Reply #77 on: December 01, 2006, 06:44:32 PM »
Amidst all this tension occurring lately in various threads, it’s actually good to see many people speak out their minds.  From outside looking in, I can see several points of agreement even from the posters that seem to have divergent points of view or are coming from the opposite ends of the chronologic spectrum of this infection.  Here’s what I see:

1.   No one here is taking living with HIV (and all the challenges that go along with it) lightly; that much is obvious from the posts, irrespective of when one was diagnosed.
2.   Each one’s experience and journey is unique and different; all are important and valuable nonetheless.  Some may have had bigger and more extensive challenges than others.  Irrespective of how big or not so big the challenges are, or how extensive or limited the experiences have been, people are all trying to make the best out of a set of circumstances in which they find themselves.
3.   Members who take time to post do expect to have their points of view listened to and respected (not necessarily validated).
4.   It’s more productive to challenge points of view as long as it is done in a non-derogatory, non-degrading, non-divisive, non-dismissive manner.
5.   Posts that may seem trivial to some may be beneficial to others.  Conversely, some posts that contain serious issues may not be so easy to respond to for a variety of reasons; it does not imply that they are trivialized or ignored. 
6.   Expressing tempered optimism and hope is not a bad thing, in the same manner as being reminded of past, current and future challenges isn’t a bad thing, either.  They do not have to be mutually exclusive.
7.   The forum is big enough for everyone to give, receive, and share support, advice, humor, grief, successes, failures, challenges, learning, etc., etc. even if people do not always get along. The choice of whether or not one participates is simply that – a choice.

I’m sure I missed something, but I see a lot of people sharing similar values here, even though they are expressed differently.  That might be a good place to start.  People don’t have to insist on being on opposite sides of the fence all the time.  Just a suggestion.

Offline AtomicA

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  • that's Famous with an F
Re: HIV Lite
« Reply #78 on: December 01, 2006, 11:12:40 PM »
two cents time -

I don't know enough about this site's history to say anything to Moffie about why he's as upset as he is. I for one am a strict realist and have never once been accused of optimism before, or after, my diagnosis. However, there were moments shortly after I was diagnosed when I was sitting in my basement staring at a package of Castor bean seeds and thinking about how easy it would be to just swallow them all and be done with it (I know, weird way to go but they happen to be the single most poisonous plant on the planet, that's where we get ricin). The only thing that kept me from offing myself was this strange glimmer of hope that I couldn't let go of. I have only been walking this road for two years now and I would like to think that in the first year I learnt more about myself and what I'm capable of than in the rest of my life combined and I'm damn proud of that. I have difficulty reading/watching/hearing anything that is dripping with optimistic and emotional sop but I am so damn glad that someone out there actually feels that way, or at least claims to, because without it... well what's the alternative? I also have to say that there have been so SO many times where I have been talking about my 'condition' with friends and I hear myself reassuring them that it's treatable, that a cure is on the way, that this is going to be just like living with diabetes if it isn't already. It occurred to me recently that I wasn't actually saying that for their benefit, but for myself. Because there are times when I absolutely need to believe that and I thank god that the people I was talking to sat there and let me talk my nightmares away. It's why I still see a point to stick with my education I think, even though I have so many years to go.

I also have to say that yes, they have been talking about a cure 'just' around the corner for decades now so I can understand the people who've been dealing with this since the 80's cynicism. There is a difference between now and then though, which is that we - as a species - are finally starting to understand the mechanisms behind this disease and how it operates. The understanding of DNA and proteomics that has developed this century gives us a hope that finally has some tangible merit to it. Having hope really is no longer wishful thinking or a pipe dream anymore - especially for those recently infected. It makes me curious when I see the 'old-timers' make such dire statements about the future and criticise the hope that most people like me have... you've watched allot of your friends die but 20 some odd years later... you're still here! Isn't that in and of itself an indication that we might win this war?

This thread seems to talk allot about the line between 'old-timers' and 'newbies' - I have to say that it reminds me in so many ways of a conversation I once had with my babi (grandmother for all you gentiles out there). Somehow, after watching her entire family and almost everyone she knew be murdered by the nazi's, she survived the Warsaw ghetto, Treblinka and Auschwitz and emigrated to Canada as a displaced person in 1946. After a year of being here, she met my Zadi who came in to the shop she was working in. My Zadi is a fourth generation Canadian Jew and contrary to what we might have expected from the Canadian Jews at the time, the survivors of the Shoa (Hebrew for holocaust) were not greeted with open arms or even much compassion. My Zadi's family nearly disowned him when he proposed to my Babi.
This didn't make any sense to me so I asked her how on Earth the Canadian Jews could react like that. From her perspective, it was because for nearly five generations, Jews had been struggling to find their place in Canadian society and were only just starting to be accepted by the population at large. She said that in some regard, the new wave of immigrants had no idea what the Canadian Jews had gone through to earn respect in this country nor had they participated in any way to build that respect, yet here they were benefitting from it, which definitely created some animosity. Of course at the time, the full scope of what the holocaust really was had yet to come to light, so few people on the Canadian side understood what the immigrants themselves had gone through.
The other thing she told me was the the Jews in Canada saw something in the immigrants that scared them. People were arriving by the boatload poor, lost, alone, terrified and with psychic wounds the hadn't had any amount of time to heal. Something that for generations the Canadian Jews had worked to escape. So allot of them turned their backs rather than to be reminded of where they had come from.

I'm not saying that it's the same situation but there are definitely parallels. When someones input or opinion is dismissed on the grounds of how long a person has worn the badge or if they have a differing opinion I start to wonder. Does some of the animosity I see come from some of the more experienced actually stem from an anger at their own reality? That it was sheer luck of a decade that someone infected now will probably not have to watch their friends and lovers waste away and die by the dozens while they were granted no such luck? I could see how someone who survived the 80's would resent that they did not have the opportunity to think "oh god, how am I going to live for the next 40 years with this? How will this affect my career and future plans to have a family" rather than "oh god, I am going to die. Brutally, painfully and soon." on that awful day they found out.

Of course this isn't always the case. Maybe it's never the case. But just like my Babi, we are faced with the paradox of both desperately needing to understand where the other is coming from without that ever really being possible. I will likely never have to experience what Moffie or anyone else from the 80's did and I say thank god for that. I also understand that had it not been for the millions of people that came before me, my friends and family probably wouldn't want to touch me anymore and I also say thank god for that. But just because the things I am and will deal with are of a different scope and perspective does not make me 'HIVlite' - it simply makes me HIV. period.

Moffie - I came to this board hoping to find a way to connect to people who could understand what I am and will be going through. To maybe get some sort of guidance and reassurance that even if things won't be OK, they will simply still be. I don't know much about you (yet, I hope) and I've not been around any of you long enough to start tossing words like love around but I do know that you are a fighter. Everyone like you that is still with us is a fighter. One thing I do know is that as this goes on... I will need advice. I will need someone who knows how to fight to show me how to do the same. As much as I (and probably so many others in my position) try and hide it, or rationalize it, I'm still terrified. You 'old timers' are the only people I know of who have faced that terror. I'd like to know how.

Isn't that why this forum is really here?
-Adam

Offline Iggy

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  • Posts: 2,435
Re: HIV Lite
« Reply #79 on: December 02, 2006, 09:26:28 PM »
.



« Last Edit: January 10, 2007, 09:11:36 PM by Iggy »

Offline zephyr

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    • Zephyr L.T.N.P. Foundation, Inc.
Re: HIV Lite
« Reply #80 on: December 03, 2006, 01:57:03 AM »
Dearest Sage and Uncle,

YOU CAN'T.

YOU MUST NOT.

AND,

YOU WON'T.

With great Love,

Zephyr

"It is character that communicates most eloquently."

Offline Basquo

  • Member
  • Posts: 3,277
Re: HIV Lite
« Reply #81 on: December 03, 2006, 02:22:15 AM »
I've been silent about this until now, but I will say that Zephyr, sweetie, YOU SAID IT.  And in so few keystrokes.

Tim, it was an honor to meet you in person and your presence here is valued by so many people, whether they like you or not.  You were the first person to PM me when I finally stopped lurking over a year ago.  I stupidly replied "WTF?" to one of EM's threads and you took the time to let me know privately what the situation was and gave me clarification.  And elightenment.

Best, and Love,
Creighton

 


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