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Author Topic: A Lament.  (Read 9183 times)

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Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
A Lament.
« on: March 07, 2007, 09:37:27 AM »
Perry:  A wonderfully sweet gentle giant of a man, with a presence to take you away to another place.  He found employment at Eagle Distributing but his penchant for theater was passion.  He served two years as President of the Freewheelers Car Club, which I started in 1978.  This club is the provider of classic cars for the San Francisco Gay Pride Parade, and be found at this link.  www.freewheelers.net   . 

Andy:  What a hottie!  20 years old, Italian Stallion, and every bit a man!  We met in the Car Club, and he was a lover of all things wheels, as am I.  He created, in the Silicon Valley, a diet bakery that was safe for those with diabetes and was very successful.

Don:  He built a home on the side of a cliff in Sausalito, and I met him in the car club also.  He also served two years as president and was known for his portable bull horn which he needed for Car Tours. 

Jack:  He owned a Country Western Gay Bar in San Jose, and was one of the prominent business men of the Silicon Valley.  He brought a lot of light and life to the Gay Community during the early 1980’s.

Steve:  A Lineman for the Phone Company, and could carry a full load of tools and his stocky frame up a telephone pole as quickly as anyone of his peers.  He was very into Egyptian History, and we talked at length about that period in history.  We would lay on the floor, drinking beers and watching I Love Lucy re-runs, as well as going on camping trips.  He had a Raging Bull tattooed on his right butt cheek and an oh-so-well-fitting 501 Levi’s with the right rear pocket neatly cut out of the pants.  He was a rather special person, and was deep, very deep.

Raul:  Laughing was his joy.  His Spanish was of course impeccable as he was a Mexican American.  Didn’t know him well, but remember him through his Husband.  We used to travel to Reno for weekends and also did a load of boating together on the Sacramento River Delta.

Lee:  Anther club member, enjoyed Packard Hearses, and had a couple shining examples of his own.  He enjoyed several years with another of the club members who was his partner.  They were calm but enjoyed anything connected with an antique home.  They had a large photo of the original owners in antique oval frames in the Queen Anne they restored in San Jose.

David:  My Real Estate agent when I purchased in San Francisco.  He was a jewel of a man who was very talented and lived with his German shepherd and his French lover.  He went into dementia and was found laying in the gutter, naked, with his dog beside him; in a very conservative neighborhood about 50 miles away from his home in San Francisco.  He lived another week.

Mike:  This man was one of those who worked in the Silicon Valley, and is famously known for his documentation tape of his neighbor beating the hell out of him while watering his front yard.  Some of you might have seen this video on Americas Most Amazing Videos, as his neighbor was convicted and sentenced for the attack.  His crime?  He was a Gay Man.

Then there was Jeff, Mike, Jeremy, Thomas, Earnest and on and on and on and on and on, until you get to a total of 186.

The list above is a very short list of those that were in some way, connected to my life before today.  Some died recently, some died in the late seventies; but all have been buried because of a viral protein that entered their bodies and killed them.  What they all had in common was a friendship, or acquaintance with me and my life. 

I often hear on this site “come on, we are all HIV+ and we are all the same.  Our experiences dealing with this bug are as valid as the old timers and they should hold us in high respect”. 

I am having a huge amount of stress over this kind of statement.  Does a Newbie here have the experience of burying 186 of their friends and acquaintances?  Does the incredible worry over your firsts one of thousands of lab tests, hold a candle to considering your demise because those medicines have killed off your organs, or your liver functions?  Does the worry over taking one pill have the same weight as those who have been through taking up to 45 pills in one day, knowing that at least half of those pills are going to tear you a new asshole, or worse, take away your ability to walk, or kill you?

I am daily shocked at the number of people here who hatefully work to diminish the experiences of those who have struggled just to be here, and now spend time that they certainly could be using for other things, to give knowledge and comfort to those that are now worried that their family MIGHT just find out they are HIV+. 

The argument that “you must take your medications” is now becoming a rule, rather than a choice.  I have always said, it is important to live your life, not subrogate it to this virus.  Part of that is coming to a peace with the medications, and if that is not possible, live what life you have and make it enjoyable, then you can pass in peace.  To fall into the trap that these medications are a must, is to give over your life and destiny to people and beliefs that are not yours and not made for every body.

Wake up people, I am not you, and you are not me.  Many of you wouldn’t even have a clue how to live in my neck of the woods.  How would you deal with 9 wild pigs in your yard, knowing they are protected and cannot be dealt with in any other way than to call the Humane Society, which is staffed by people who don’t give a damn about pigs?  Put up a fence you scream?  OK, I got the money for the fence material, but don’t have the strength to go down into the canyon and put it up.  No I can’t hire anyone, because I don’t have money for that.

I am not complaining in this thread, but I am making a very feeble attempt to light a candle and show many of you that in fact we are not alike and I will not accept that statement.  I often hear the Mods here making pleas to people “Can’t we all just get along?”.  I say probably not.  One of the keys to making a community function is to respect those who deserve respect and to make every attempt to learn from them and not to diminish their words or experiences.  Can you imagine where we would be as a culture if everyone told their grandparents that they didn’t know shit, just because the internet was foreign to them?

For those who are listed above, and for those who were lost to DRUG TESTING, I remove my hat and I thank the creator of the universe that I was privileged to know them and to share their experience in life.  These people re-enforce my differences and at any given time, keep me focused and progressing towards the enlightenment that we need to stop this virus in its tracks.

By our obvious consent, we have allowed many of those with knowledge to be shat upon, and kept silent, by those who don’t know shit about this disease, but are too scared, angry, ill-informed, disrespectful and outright not nice; to hold their fingers and just listen to those who have knowledge you all really need. 

I am pleading here for sanity, for a non aggressive approach to this conversation.  That way, maybe we can get Jonathan/jkinatl2, Joe Killfoile, and a few others who have been verbally beaten into submission, to return to giving us the capacity of their personal knowledge and their wealth of experiences to enrich our lives and help us learn about this virus.  Knowledge is power, and I fear many of you will not survive this bug, simply because the knowledge you really needed to stay alive was squashed simply because some person got their feelings hurt and lashed out with their keystrokes and killed the source.  Yes, at the age of 60 and with 24 years of living this bug, I still learn so very much from these people and some of the things I have learned have not only enriched my life, but applying that knowledge has made my life easier to deal with.

Many are put off by Matty’s assumed meanness, and his impatient nature.  Well, when did you ever see a child that was happy to be disciplined because they were being stupid?  I am not saying that Matty is our local disciplinarian, but he is very astute at finding those that are disrespectful and taking them to task.  I am sure that many are just trying to goad him and get a response.  Many of those who have dealt with the virulence of this virus are not willing to allow people here, to minimize its effects on a body, and there is absolutely no proof, beyond the sound bites of the Pharmaceutical industry, that anyone will be able to live for 30, 40 or maybe even 50 years while taking their poison.  Only the doctors that are getting $500 every time they tell one more patient that they will live forever, are benefiting from this campaign of lies.  What bullshit!

For those of you, who are going to attack me for this thread, don’t waste your time.  I am not one to coddle ignorance.  The knowledge that many of us have applied to survival, is the reason we are still here, and it isn’t always the drugs that have kept us alive, but our quest for keys to keeping the virus under control by many other means. 

Many people on this site, have lists like mine above, some longer, some shorter.  They are usually not named, and they are almost always silent about their pain and their loss which seems never to go away, but only becomes attenuated by time alone.  One of the owners here has recently lost a friend who was totally adherent to the meds, totally committed to the fight for eliminating this disease, and yet...........  he has died.  Yes folks, I have news for you, we are all dealing with a deadly and virulent virus that will kill you and do so with a cunning that will surprise you.  Get used to it!

Just my humble opinion!
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 aztecan

  • Member
  • Posts: 5,394
  • 29 years positive, 57 years a pain in the butt
Re: A Lament.
« Reply #1 on: March 07, 2007, 09:59:35 AM »
Tim,

As always, you have said a mouthful.

One of my people died yesterday. He put up the good fight, but there simply wasn't enough left of him to fight with.

When he dropped to 60 pounds, I thought he wouldn't last the week. That was last year. He managed to fight his way back to more than 100 pounds.

But, MAC finally did him in.

I hope Stan's transition yesterday was a peaceful one.

As you stated, I have my list as well. Yesterday, I added another name to the list.

Not everyone will appreciate what you've written Tim. Many want the easy road, the single pill.

There is no easy road with this bug and, in the end, it will kill us all.

After 22 years, I sometimes wonder where the energy comes from to keep fighting, keep struggling.

Maybe it was that incredible sunset we had last night. Perhaps there is still enough hope in me to prevent my giving up.

Maybe I'm just too damn stubborn.

HUGS,

Mark

(edited for additions)
« Last Edit: March 07, 2007, 10:06:09 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline David_CA

  • Member
  • Posts: 3,246
  • Joined: March 2006
Re: A Lament.
« Reply #2 on: March 07, 2007, 10:20:54 AM »
Tim and Mark (and others),

The partial list you just posted is exactly why I will never trivialize your experiences with this virus.  Even now, as I sit at work, at my desk, my eyes are tearing to the point I need to close my door.  No matter how bad this virus gets for me, I don't think any aspect of it will surpass the loss of so many friends, lovers, and acquaintances.  That part is one aspect that I know I'd not get over.  Although I don't live in an area like SF, Atlanta, or NY with a really large gay population and I probably never will experience losses like yours, they still impact me tremendously.  Thanks  for the post.

I posted in another thread about having a face, a person associated with HIV / AIDS.  This is EXACTLY what we need to help lessen the stigma.  I'd love to see an ad campaign, with a picture of the individual in the peak of health, a description of their personality like you've given, flash over the picture one sentence at at time.  Then, I'd like it to end with something like "1952-1986 Cause of death - AIDS" or similar.  That would add the personal element that's missing from any current campaigns I've seen.  These are just my Adderall induced rambling thoughts.  Take care.

David

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

Offline Lisa

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  • Formerly known as sweetieweasel/Joined Nov. 2004
    • http://www.myspace.com/lisanowak58
Re: A Lament.
« Reply #3 on: March 07, 2007, 10:58:34 AM »
While I am not especially wild about some of the comments I have heard some of the posters use here, I try to always take it with a grain of salt, and not allow myself to become stressed, or offended by what another says.
If the newly diagnosed are being lulled into a false sense of security about this disease, it may be in part because of their medical professionals blowing smoke up their skirts, or because it is the reality that they are only willing to accept at this point in their personal walk with this virus.
I try to help when I can, and offer advice if I think the poster has a willing ear.
I really believe that the willing ear, is the crux of the issue here.
We cannot spoon feed someone who is wildly swinging their head to and fro, with lips sealed tightly. The only thing we can do as a community, is allow them to walk their walk in their own way, and be there to prop them up if they stumble, and ask for help.
You are right about the fact that many of us do suffer in quietness(if not silence), because it takes too much energy sometimes to clack out  how crappy we feel that day. I have personally had a lot of those days lately, as have you.
I'm also fairly sure it is that very factor that keeps me from entering some of the frays regarding this issue.
My own personal manner of contributing to this community, is to welcome all, keep an open ear, help whenever I think I can, and offer a soft place to fall if that should happen, because those are the things I would want. If I offer advice, or commentary to someone, and they take issue with it, it is not my place to make them believe how I believe.
It saddens me to see others berated, or belittled, because there will inevitably come a day, when that person will have an invaluable viewpoint to offer.
The singular event that keeps me going, is the incredible power of what my heart felt when we stood in that circle in a chapel far away. I have developed deep, abiding friendships at this place, and will never turn away.
I choose to live, and let live. If I can help another person along the way, all the better.

On a more personal note, I understand your issue with the pigs. The weather here in North Carolina has already turned into spring. We are having more days in the sixties, and the trees are budding, and the onions are sprouting everywhere! I have several very old elm trees on my property, as well as a walnut tree that has nearly been engulfed by wisteria, and the yard is littered with limbs, and branches,(and the trash from dumpsters from the apartment complex two yards over), and I don't feel well enough most days to go out and start the cleanup. I barely keep my house liveable, let alone venturing out into the yard.
Yes, I have three 25 yr. olds to call upon, but they are strangely absent when it comes to "doing" things for momma.
Make you a deal. I'll strengthen my resolve to find a guilt tactic that works on the kids, and you could get a pump action BB pistol to send a message to the pigs.
See? Both of our issues with pigs will be taken care of.  ;)  ::)



No Fear  No Shame  No Stigma
Happiness is not getting what you want, but wanting what you have.

Offline AlanBama

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  • Posts: 3,613
  • Alabama: the 'other' 3rd World Country!
Re: A Lament.
« Reply #4 on: March 07, 2007, 11:11:10 AM »
This post made me cry also David.   For all the friends Tim has lost, as well as the ones I and many others here have lost.   I never want their deaths to have been in vain.

I have been in kind of a dark place recently, feeling a little sorry for myself I suppose....you see, there's an "opportunistic condition" that is seldom mentioned in any AIDS literature - it's POVERTY.   I am sick to death of being poor.   Tired of fighting bureaucracy to get my meds and medical care, because I can't afford it.   My significant other's Medicare Part D coverage was cancelled this week, due to non-payment of premiums by our MEDCAP program in Alabama.   He currently has no way to get his meds.   We are praying that it will be resolved quickly, but these things have a way of snowballing.

I'm tired, I'm angry and I'm scared.   This disease and all the unpleasant things that go along with it are sometimes more than I think I can bear.   But I manage to pick myself up and trudge along through another day, another week.

Tim, I feel your pain my friend.   For everyone in the forums whose virus is manageable and your life is relatively good, my prayer today is that it will remain that way for a long long time.   For the rest of us, my prayer is for the strength to carry on, and to not become so bitter and jaded that we don't know how to feel love anymore.

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 Lis

  • Member
  • Posts: 593
Re: A Lament.
« Reply #5 on: March 07, 2007, 11:23:19 AM »
the one thing that I have noticed is that even after all these years the level of my fear of this disease has diminished very little.. It has changed to a sort of blind acceptance that I have little control of it, and no amount of worry or guilt will change anything.

Each day is a gift, no matter what ugly thing happens... Yes that feeling of.. "crap, I don't think I can do this again today" is ever present as the nausea rolls over me as I roll out of bed.

Thank you to all those before me.. fighting the good fight, and I hope to fight as hard as they..

poz 1986....

Offline thunter34

  • Member
  • Posts: 7,310
  • His name is Carl.
Re: A Lament.
« Reply #6 on: March 07, 2007, 11:33:23 AM »
Thank you, Alan.  I just read your post while I was trying to formulate a similar post in my head.  

Yes, AIDS is a manageable condition:  I have the condition, and I am keenly aware of how I am managed.  Because of the costs associated with trying to take care of my health, I am constantly in need of this one's stamp and that one's signature.  I can do X but not Y.  I can live here, but not there (or else fall out of the service range for my ASO).  I can work some- but only to a point, lest I fall into the financial donut hole and lose assistance for my prescriptions.  And I have the threat that this assistance might get withdrawn with the stroke of a pen hanging over my head.  It's a worry that plays quietly on a loop in the back of my head...the same way the potential threat of an OI does.  

While I am extremely thankful that I am not currently having to confront a serious OI, the financial quagmire that can come with HIV/AIDS has been one of the more difficult aspects of ''living with'' or ''managing'' the disease for me thus far.
AIDS isn't for sissies.

Offline woodshere

  • Member
  • Posts: 1,477
  • ain't no shame in my game
Re: A Lament.
« Reply #7 on: March 07, 2007, 11:45:03 AM »
I tested positive one year ago today.  There is absolutely no possible way that my HIV experience will be anything, anything at all like someone who tested positive 20 years ago.  I know people are still dieing from AIDS but nothing like when this mess first started.  I came out in 1986 and most likely would have become infected and in all likely hood be dead.  The thing that prevented that is I didn't live near a large gay community, because I was a major slut.  So by the luck of the draw I was fortunate not to have to go through that tragic time.  I don't have the experience of watching my friends die.  I don't know what it is like to be near death and come back only to repeat the process again.  I don't know how it feels to be told you are going to die in a year.  I do not discount those experience others have had nor do I think they do not have value as we face being newly diagnosed in 2007.

However, what am I to do?  When my doctor told me I was positive, he also said that HIV is no longer a death sentence.  My ID doctor has told me to expect to live a long time.  I didn't leave the office with out options for treatment or only 1 possible option.  I left with choices of which drugs to take and how would they fit in the routine of my life. I am not ignorant of what has occurred in the past nor of the fact that things might change for the worse in the future.  However, that change might be for the good.  In 1990 a young man who tested positive didn't know that drugs were only a few years away that changed everything about HIV.  I am hopeful that will happen again. Until then I will continue to listenin to my doctor, taking my meds and having faith that things will get better.  And please don't think because I just tested positive that my opinion is any less valuable than someone who tested positive 5, 10, or 20 years ago.  

I posted this yesterday and will today, the battle of newbie vs oldie does no good.  We must respect each others experience.  We all have HIV, it is just our journey's have been different and will continue to be different.  I don't expect you to fully understand my journey as I cannot fully comprehend yours.  But can't we agree that we are in this together and find ways to help one another and help those around us wherever we are?

Woods

edited to change a few wording problems
« Last Edit: March 07, 2007, 11:48:48 AM by woodshere »
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: A Lament.
« Reply #8 on: March 07, 2007, 12:25:47 PM »
Thanks to all of you whose lifetimes of pain, confusion, struggle and sickness answered this thread.  You know who you are, and I am in your debt for sharing.

One comment to Lisa.  Can't have BB guns in town, but I am very good with a slingshot at 100 feet and I use this when the dogs don't spook the family.

Woods.

"But can't we agree that we are in this together and find ways to help one another and help those around us wherever we are?"

I cannot answer that question, as the answers are already present in this thread in one way or another.  I offer the following for sources that might possibly have studies that illustrate the possible futility of painting vicyory with a broad stroke of denial.

From my original post:  "maybe we can get Jonathan/jkinatl2, Joe Killfoile, and a few others who have been verbally beaten into submission, to return to giving us the capacity of their personal knowledge and their wealth of experiences to enrich our lives and help us learn about this virus.  Knowledge is power, and I fear many of you will not survive this bug, simply because the knowledge you really needed to stay alive was squashed simply because some person got their feelings hurt and lashed out with their keystrokes and killed the source."

"One of the owners here has recently lost a friend who was totally adherent to the meds, totally committed to the fight for eliminating this disease, and yet...........  he has died.  Yes folks, I have news for you, we are all dealing with a deadly and virulent virus that will kill you and do so with a cunning that will surprise you.  Get used to it!"

"Only the doctors that are getting $500 every time they tell one more patient that they will live forever, are benefiting from this campaign of lies."


Which relates to your statement of this: "When my doctor told me I was positive, he also said that HIV is no longer a death sentence.  My ID doctor has told me to expect to live a long time."

My Lament here Woods is that regardless of what the above posts have said, still, you deny the truth that in fact we know nothing about this disease yet that shows that we can kill it without killing the host.  That is real, and that is the truth.

I would strongly recommend that you ask your doctors if they believe the crap the drug companies have fed them about this being a non issue disease so much, that they would stake their lives to the drugs.  Only take a serious answer.  I doubt if any of them would truthfully tell you yes! 

Re-read the above posts and then imagine you are in a room with all these people and see if you would say what you wrote.

Love,
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 poet

  • Member
  • Posts: 934
  • Poet living and working in Central Maine
Re: A Lament.
« Reply #9 on: March 07, 2007, 12:34:06 PM »
Perhaps we don't deserve respect.  Look at the list of writers who were part of the Violet Quill: Christopher Cox, Robert Ferro, Michael Grumley, Andrew Holleran, Felice Picano, Edmund White, and George Whitmore.  'Andrew,' Ed and Felice are still writing.  Does anyone remember Chris, Robert, Michael or George?  Not a lit quiz, but can anyone connect them, men who were writers, with their words?  Or Alan Barnett, who received my congratulations on his first short story collection... a week before he died?  Anyone recall one of his stories?  Or Patrick Angus, who gave me the use of his paintings for my first book?  Anyone picture one of his paintings?  Or K. Robert Schwarz, who the New York TIMES forgot to make note of when he, one of their own, died?  

From Saturday's Wall Street Journal: Leading From Below.  1) Make the decision to be a leader.  2) Focus on influence, not control.  3) Make your mental organisational chart horizontal rather than vertical.  4) Work on your 'trusted advisor' skills.  5) Don't wait for the perfect time, just find a good time.  6) Expose yourself to a broader range of perspectives.  7) Encourage questions without answers.  (Etc.)

Only those with long experience can remember those in the past and yet we have allowed those to be forgotten.  Not just the names, but the very reason for which they felt that they had lived: what they did and left us, forgotten.  We forget to listen and in forgetting to listen, we forget how we are able to share with each other, to be in each other's shoes, now; then. Go into the cliff thread.  Since  anyone can call something a cliff, is there a way that we who have jumped it get those looking over it past it?  It's as much a cliff to them as it may have been for us.  We earn, not deserve, respect when it is given and it can only be given by others.  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.

Offline Bucko

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  • Posts: 1,947
  • You need a shine, missy!
    • The Spin Cycle
Re: A Lament.
« Reply #10 on: March 07, 2007, 12:56:07 PM »
Tim-

My own benchmark of loss was 60, when I gave up counting (but never stopped grieving). I still live with the daily terror of watching my most beautiful, most brilliant, most promising friends (lovers, tricks and associates) felled all around me. It was the primary formative experience of my twenties. I started a complimentary list to yours, but gave up and erased it all, unwilling to visit that darkest place this afternoon.

The pig analogy was brilliant, but for me it seemed that a pack of wolves had invaded, hungry wolves that seemed never sated until nearly everyone I'd ever cherished was gone.

In my panic I thought I'd escaped to Paris with the love of my life only to find that I'd been followed. Just posting a brief bit in Boo's Hospice thread in OT about the last months of my life there pushed me into a kind of echo-chamber of loss and grief impossible for those who haven't lived through it to comprehend fully.

Brent
(Who stands shoulder to shoulder with his friends)

Blessed with brains, talent and gorgeous tits.

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

Blathering on AIDSmeds since 2005, provocative from birth

Offline Moffie65

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Re: A Lament.
« Reply #11 on: March 07, 2007, 12:58:15 PM »
Win,

"Perhaps we don't deserve respect"

OK, I will not respect you!

"From Saturday's Wall Street Journal:"  

Like I can really afford a copy of this rag sheet that only has the real interest of the top one percent of the top one percent of this country?

I posted my questions in your other thread, and I stand by my confusion.

Love,
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 ACinKC

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Re: A Lament.
« Reply #12 on: March 07, 2007, 12:59:37 PM »
As a relative newby.  I thank you all for reminding me of the legacy of others before me.  Always seems to ground me in reality.  This is why we need a diverse culture on this site. 

THANK YOU.

Andrew
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 BassMan

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Re: A Lament.
« Reply #13 on: March 07, 2007, 01:01:19 PM »
This is a tough one. How does one respond without offending someone?

I agree with Woods; there is no way someone newly-diagnosed can possibly understand the experiences of someone who was diagnosed in the 80’s, has lost nigh on 200 of their friends to this virus and – confounding the medical odds of the day  – is still here in 2007 to tell the tale. I’m sure there are few who would dare devalue that experience and I for one have the utmost respect for anyone who has survived from the “dark days.”

I think there’s a generational thing going on here. There’s a whole group of people now who have no memory of those times because they weren’t around. It’s like when your grandmother used to tell you about the war; you listened and tried to imagine what it was like, but you never really could because you lacked the emotional attachment possessed only by those who actually experienced it.

My only response can be based on my personal experience. I have been diagnosed for 5 years this year, though I still consider myself very much a newbie. I live in Manchester, UK, where there is a very large gay community. It’s estimated that 1 in 10 of Manchester’s gay men are positive and I personally know dozens of them. Yet do you know how many people I know who have died from HIV-related illness?

One.

And that was over 10 years ago. He too was one of the “old school” who finally had nothing left to fight with. I don’t even know of anyone who has had any major health issues, excluding my own very brief flirtation with KS that only lasted 3 months.

Where am I going with this? I suppose what I’m trying to say is that the landscape in 2007 for the newly diagnosed is vastly different from what it was back in the 80’s. Back then, the outlook was bleak. You got your diagnosis and were told you were going to die. Period. Today we’re told, “expect a long and productive life,” or “it’s a manageable condition,” or “how does forty years sound?” And if the meds don’t suit us, there are alternatives, and we’re hearing of more in the pipeline every day. Who knows what’s around the next bend? If we’re to believe what we’re being told, it’s extremely difficult not to feel at least a little optimistic for the future.

I’m not saying there’s nothing to worry about and that it’s all a bed of roses – far from it. But the newly diagnosed in 2007 have a different set of challenges to deal with, not the least of which is dealing with the fact that in all likelihood they’re going to be living with this virus for a very long time.

I think those challenges may yet pan out to be every bit as valid.

Carl
Manchester, UK

*Edited for spelling
« Last Edit: March 07, 2007, 02:26:08 PM by BassMan »
Diagnosed December 2002
CD4 810 VL 750,000

Started meds October 2004
CD4 405 VL >100,000

Latest Results: October 2009
CD4 888 38%, VL undetectable
on fosamprenavir/ritonavir & Truvada

VL undetectable since November 2005

Offline keyite

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Re: A Lament.
« Reply #14 on: March 07, 2007, 01:01:36 PM »
Sorry Moffie, have the utmost respect for you and, like everyone else, I was blown away by your account of lost ones, but dismissing Woods (or any of us newly diagnosed) as just being in denial really doesn't do this discussion any favours. You started off the thread by saying that we are all different and that the wealth of personal experiences on offer can enrich all our lives. I agree and I think that applies across the board, including Wood's experience. Different from yours, yes, but no less valid.




Offline woodshere

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Re: A Lament.
« Reply #15 on: March 07, 2007, 01:07:49 PM »
Thanks to all of you whose lifetimes of pain, confusion, struggle and sickness answered this thread.  You know who you are, and I am in your debt for sharing.

Well that pretty much says if you're newly diagnosed then don't respond to this thread unless you completely agree.  Why not hang a sign that says, Do not enter  unless positive for 10 or more years.

My Lament here Woods is that regardless of what the above posts have said, still, you deny the truth that in fact we know nothing about this disease yet that shows that we can kill it without killing the host. 

I take complete offense to this statement Moffie.  I do not deny the truth.  I have admitted in many of my posts that I do not know what the future holds for me.  I might very well die being adherent.  But you know I might very well live.  If you tell me I'm in denial because I am greatful that my meds are working and the possibility is there I will live for many years then so be it.  

Re-read the above posts and then imagine you are in a room with all these people and see if you would say what you wrote.

Yes I would write the exact words.  Because I fully appreciate the fact I cannot - no way no how - know what you or other long term survivors have seen and experienced.  I never discounted your experiences and said they are of value.  I also said that yes I will listen to my doctor and take my meds. And finally I simply asked and would ask if actually in this room that we all accept one another for where we are on our journey and work together to help one another.

Woods
« Last Edit: March 07, 2007, 01:09:54 PM by woodshere »
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline Ihavehope

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  • Yes, I'm a cry baby, AND WHAT?
Re: A Lament.
« Reply #16 on: March 07, 2007, 01:11:43 PM »
As a newbie, I appreciate to hear stories and threads of the people who suffered from HIV a decade or two ago. I for one, know AIDS exist still today becauese I knew 2 people close to me who died of AIDS in 2005 and 2006 who were fairly young. But both also refused to continue taking meds and were heavily into partying which may have contributed to the rapid fate of death. One of them was newly diagnosed and simply couldn't bare with taking the meds on a daily basis and made the decision to live his life as wild as he wanted the other person decided to stop meds because he was fed up with the side effects of taking them for over 13 years. They both lived active lives until the end. Then there are many of us who decide to take HIV by the horns and regardless of the severe side effects and fears of meds we put up with it because that is a choice we make.
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline aupointillimite

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Re: A Lament.
« Reply #17 on: March 07, 2007, 01:12:17 PM »
Don't worry
Be happy.
Things'll get better naturally
Don't worry, shut up, sit down
Go with it, and be happy.

Tim, I do see the divide you're talking about.

Why do you think it exists?  Why is there such a disregard for your experiences?  Why do you think you're being swept under the rug?

I'm not trying to pull that therapist bullshit... I'd like to know WHY you think this is happening... perhaps there's a solution to this somewhere... 

Please don't misunderstand my intentions... I have my own theories as to why and would like to discuss them with you... but I really would like to know what you think... do you think there's a profound difference in the way HIV is being treated (not just medically but emotionally, socially, and psychologically) that creates a cultural divide, or is it a simple matter of a generation gap... or something wholly other?

I've heard Jonathan say that sometimes he feels like a Cassandra.  But what a lot of people forget is... Cassandra was right.
Your tastebuds can't repel flavor of this magnitude!

Offline Lisa

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Re: A Lament.
« Reply #18 on: March 07, 2007, 01:36:14 PM »
I like Carl's analogy. I also believe there is nothing wrong with holding out hope for the future. While it is true that we still don't know what the long term will hold for any of us, we still must nourish each other with our melded experiences.
Many of our younger members have fair numbers, and are still able to work(and thereby have easier access to drugs)but not all, by any stretch. Many of them have not had to suffer the indignities of large smelly waiting rooms to sign up for social services, frightening periods of waiting for meds needed to continue living, deciding whether they can afford some tuna and bread, or should they save that money for a prescription that is not on their respective state's ADAP drug formulary....the list goes on ad infinitum.
Despite our disparate life experiences, I find it more helpful to me, to use everyone's collective voice.
Rather than seeing a divide, I see a melange of lives that make up our community as a whole.
No Fear  No Shame  No Stigma
Happiness is not getting what you want, but wanting what you have.

Offline Moffie65

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Re: A Lament.
« Reply #19 on: March 07, 2007, 01:53:16 PM »
HEY EVERUYONE>>>>>>

I write unemotionally, and when something like this thread comes here, it is a mind dump I have little control over.  Yes I am not terribly patient, and yes I am a caustic fool sometimes.  That does not mean that I am in no regard of Woods opinion.  Ihavehope and all the rest of you who are new to this, please please understand that this one almost ended up in the delete bin, only becausee this subject is so nasty to some of you.  How can I get it across to you that disagreement with you is not bashing you in the face?  Shit, lighten up!

Here is a synopsis of what I have learned over the last 6 years.

Bush takes power.
Fills cabinet and staff positions with totally agreeable people in the areas of War, Politics, Science, Medicine and even Global Warming!
9/11 happens.
War is declared.
Bush:  "Ryan White is taking a load of money from the coffers that we need for Iraq"
Pharma is approached to find an answer.
Let's push HIV-Lite.
Cool, lighten up of service delivery under Ryan White
Infections skyrocket in the straight community
Ryan White is flat funded based on infections 2001
Doctors are recruited to push HIV Lite to new clients.
Presto, we now have HIV Lite institutionalized only because said doctors are in the pockets of Pharma.  Which is premised on, the drugs will work forever, and if not due to mutation, there are always more, and more coming.  Maybe.  This is a mutant virus, and more and more people are coming into care with untreatable virus.
Top Medical people and Scientists are only allowed to say what the Whithouse says they are allowed to say.
Katrina is valid proof of that.

I have watched and listened at many conferences and my beliefs are based on words and findings from as far up as the Whitehouse.  I know what I know, and would like to share.  If you don't want to be the benificary of my experience, knowledge and research; please feel free to move on.  I would kick the ass of any doctor that promised me a long life.  Then I would find one that understood the science.  OH, I guess I did that already.....

Benj.

I wish I knew the answer to your very interesting questions, and if we can get anything out of this discussion, it should center around some of the things you have so clearly stated.  Regardless of what some say, I am sure that denial is very much a part of the reasons for ignoring what appears to be the truth.  That and a huge amount of suspicion that accompanies this medium we are using.  Also, I think that to admit that your doctor is full of shit, is also to challenge one with a hunt for one that doesn't project a dishonest approach to this disease.  It also demands that one has to change the way they are currently comfortable with thinking, and that isn't easy.  Most of what Jonathan, Joe and many others here have given to this site, has been learned over years of intense research of all fields of this disease, and to doubt or diminish what they are saying is really something I don't understand at all.

Also, the generational divide in our society is not shunned with pleas of sanity, but celebrated with walls of division all over the place.  I often times see a post here that connects me with you tube or some place where the message is delivered via video.  I just don't have time to sit here and wait for my dial up to deliver something I wouldn't care about if it were given to me.  My issues are currently full of details about my current existence on this world, my challenges are with life or death decisions, so how do I have time to let mental masturbation take up any of my precious time?

I wish I had the answers to your questions, but maybe someone does.

Love,
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 Lis

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Re: A Lament.
« Reply #20 on: March 07, 2007, 02:21:47 PM »
I get the feeling that we old farts felt like outcasts for many years in the greater community... those that had the hutzbah to fight are our heros!! There are meds, healthcare, and respect for AIDS patients as a result.


now.. fast forward 15-20 years... we are outcast again...  its odd....

WOW.. full circle...
poz 1986....

Offline David_CA

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Re: A Lament.
« Reply #21 on: March 07, 2007, 02:26:16 PM »
I get the feeling that we old farts felt like outcasts for many years in the greater community... those that had the hutzbah to fight are our heros!! There are meds, healthcare, and respect for AIDS patients as a result.


now.. fast forward 15-20 years... we are outcast again...  its odd....

WOW.. full circle...
Lis, I don't know who you think is casting you out again.  I don't really see it happening, except here in a very few isolated posts.  If anybody is considered outcasts, I'd say it's by the general population and is directed to EVERYBODY who is HIV+ or has AIDS - you, me, and future folks that haven't yet been diagnosed.

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

Offline keyite

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Re: A Lament.
« Reply #22 on: March 07, 2007, 02:50:43 PM »
David, I don't see it happening either. Lots of talk about disrespect, disregard, being swept under the rug, being outcast, etc. All Woods did was offer another perspective - while being at pains to acknowledge other perspectives, including those of the long-term survivor's.

What I do see is dogmatic insistence that only one type of experience is valid. And an insistence on the one and only 'truth'. Truth, just like statistics, is very much subject to interpretation and perspective.

Yes, the divide, sadly, appears to be alive and well. Perhaps not so clear cut who's creating it.


Offline sdcabincrew74

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Re: A Lament.
« Reply #23 on: March 07, 2007, 03:00:46 PM »
I am trying really hard to keep my mouth shut here.  But, it irks me a little of some of the hostility towards "newbies" and their attitudes.  I consider myself a newbie, really, found a little over 2 years ago.  But, ya know, it certainly has not been easy either!  I have had PCP and I have had MAC.  I have been unable to work, I have taken meds that made me feel worse, I have been unable to walk, I have been shuned for being poz and even further shunned because I clinically have AIDS, I have buried well over 65 friends to this virus, and countless more due to a little devil called crystal that is destroying this gay community as quickly as AIDS did in the early 80's, I work for a company that fires HIV positive folks and we are forced to hide to avoid that fate, I am also dealing with a time of falling funding because this is not a big deal anymore!!!

So, you know what?  We all have our crosses to bare.  I look to our long term survivors for hope because frankly some days I have none.  These meds are going to kill me just as fast as this virus took me down!  So how about just an ounce of understanding for those that are scared and new and trying to understand how this "managable" disease is going to be managable over the next 40 years when we are in the toilet 10 times a day shitting and puking our guts out!!!
« Last Edit: March 07, 2007, 03:02:22 PM by sdcabincrew74 »
The difference between an overnight and a layover is luck!

Offline Ihavehope

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Re: A Lament.
« Reply #24 on: March 07, 2007, 03:09:03 PM »
Hey Sdcabincrew..

Soo sorry to hear all the things you have been through. I am a newbie too, and have not been attacked or had much hostility from people who have been living with HIV for many years. I have had a couple of people who misunderstand my threads or judge me based on my recent diagnosis but I simply ignore all the negativity and just take in the things that are relevant to me right now. I will worry abut death and OI when I am there, and try to focus on other things now.

Al
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline BKNYLivin

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Re: A Lament.
« Reply #25 on: March 07, 2007, 03:17:32 PM »
"I often hear on this site “come on, we are all HIV+ and we are all the same"
Anyone who expects all of us to be the same because we are all positive is living in cloud cuckoo land. I respect the opinions and experiences of most regular posters - whether they are newbies or old -timers. Most have something valid to contribute to this public forum - different, as fas as experiences go, but still valid(at least to me anyway).

Obviously, a lot of "newbies" won't have the same amount of loss and the issues regarding meds, side effects etc. - so it would be stupid to negate the experiences of old-timers, who have been through much more than most could even begin to imagine. However, this doesn't mean all "newbies" haven't experienced the devastation that is HIV/AIDS - some of us who have tested positive recently aren't 20something and have lost many, many, friends(and continue to do so). I just started taking meds three weeks ago, so I don't have the personal experience with meds, but I have seen friends whose lives were virtually crippled by meds and or HIV/AIDS(I always had much older friends too, which taught me so much).

I have also been hospitalized with pneumonia and neuro-syphilis since my diagnosis, which meant problems with my liver, an enlarged heart, infected lining of the brain etc.

Then, I have the whole "black experience" thing - 56% of "late testers" (people diagnosed with AIDS within one year of an HIV diagnosis) are African-Americans. Many of my friends have fallen into this category - they don't take just one pill.

I have other friends who have chosen not to take meds(or can't deal with the side effects) - I respect their choices. We all deal with this virus differently - when Atripla is no longer working for me, I might decide I've had enough or might have complications as a result of years on toxic meds - who knows........
Some of us have friends on different continents(because we've lived in quite a few countries) and they have their own unique issues/experiences, which would be very difficult for the average HIV+ individual in NYC(which is where I live now) to understand.

My point is this is a public forum, we are ALL different and should try and respect each other's experiences. I don't take everything I read here as gospel - I absorb what I need to and live my own truth. But, I appreciate the fact that the old-timers are here to enlighten some of the newbies who feel this virus is not that difficult to deal with("just pop ur pill and everything will be ok") - yeah, for now maybe.

I don't believe in doom and gloom, but I believe in researching and understanding the reality of what is and what might occur in the future.
Just my two cents.........
 
Diagnosed 9/18/06
10/13/06 - CD4:449, 33%,  VL:>500,000
11/20/06 - CD4: 392  VL:425,000
02/08/07 - CD4: 361, 16.9% VL:133,000
02/13/07 - Started HAART: Atripla
03/08/07 - CD4:401, 23.8% VL:643
06/05/07 - CD4:614, 33.6% VL:225
09/14/07 - CD4:612, 37%  VL: <50
12/14/07 - CD4:582, 38.5% VL:<50
4/11/08 - CD4: 658, VL: <50
3/5/09 - CD4: 847, 49% VL: <50
7/29/09 - CD4: 965, 50.1% VL: <50
12/28/09 - CD4: 925, 49.2% vl <50
9/16/10 - CD4: 1011 vl: <50

Offline tigger2376

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  • too bad to die youngish!
Re: A Lament.
« Reply #26 on: March 07, 2007, 07:02:35 PM »
Its what I've said before. You don't walk into a room and expect to have everything in common with everyone you meet there,even if you are all drawn in by a mutual experience or need. I'm sorry, I'm not as articulate as some. I respect everyone who has and will deal with the killer we all have in common.
I know I'm privileged to have more options than people had in the past and thank God for it daily.
I loathe and despise the pharmaceutical companies who make money from our pain..but I need their product at least for now.
I'm not saying 'Lets all get along' because thats just not reality, but we can gain wisdom from those members both old and new

And some people just make me cry every time..Moffie, you astound me
x
I know i'm going to enjoy the party in the afterlife, but do you all mind that I'm going to be VERY late!!!

Offline bravebuddharich

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Re: A Lament.
« Reply #27 on: March 07, 2007, 07:18:12 PM »
Newbies and longterm survivors have different experiences, all of which is worthy of respect and honor.

I was thinking throughout this thread about the group ActUP! back in the 80's and 90's - on the one hand, I admire the activism, the fire, the fighting spirit; on the other hand, I think despite good intentions they did real harm, not questioning the drug regimens available then (I understand why, I'm just working something out here, bear with me) - I certainly stayed away from those drugs then, and think insisting on pushing through drugs too quickly cost many of our friends, lovers, family members, etc. their lives. I am just so glad that there are so much better drugs now - with less severe consequences, which is not to discount that there are still unpleasant consequences! I am glad that newbies are having different experiences than we others did!! I think what might be at stake is to not forget us, or forget our friends, loved ones, from the past, either.

Metta,
Rich

Offline poet

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  • Poet living and working in Central Maine
Re: A Lament.
« Reply #28 on: March 07, 2007, 08:00:10 PM »
While no longer respected, :) I would be among the first to admit that we were never perfect in that long ago past.  Remember AL721?  Hopefully, not.  As Rich points out, yes, we sped the drug approval process up, but wasn't there logic behind why approval took so long, such as making as sure as possible that we had the right drug for the right reason?  Yes, we saved some who couldn't wait.  But what about some others who could have waited?  Was PWAC wise to ignore its founding charter, to never own a brick because that would mean that aids would be here forever... and then buy a building and self-destruct financially?  Who were we helping by no longer being there?  Am I here each day to tell the story of aids/hiv: the beginning?  No, frankly.  I am here to face it as we face it today.  If something from the past, experience, good or bad, might help, so be it. 

There is no divide, unless we create it ourselves, unless we choose to show disrepect for each other, telling others what they know as if we could be in their heads.  We can not understand each other, from time to time and at those instances, if we respect each other, we ask, 'what exactly did you mean?' or 'can you fill in some more details because I need to understand you, your situation?'  My thread about commonality versus diversity seemed to suggest that the very diversity here is what so many people found useful.  Different viewpoints.  Different experiences.  Different ages.  Different cultures.  Different challenges.

Am I an oldie because I have survived.  Or not, because I have not suffered o.i.'s?  Do we need to have scars to trust each other, to respect each other?  Is a minister better because he has held his position for many years than a minister who is fresh out of seminary?  Or a doctor long in practice versus a resident?

Only the newbies will answer me because respect, as I have said, must be earned.  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.

Offline LatinAlexander

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Re: A Lament.
« Reply #29 on: March 07, 2007, 09:14:31 PM »
tough thread....

What can I say? This virus is scary. No happy faces like in those pharma ads. This is the real life. Nobody told me that I wouldn't be able to stay up late at night, because sustiva would KO me. Nobody told me that my arms and legs would hurt for 3 months now , AZT courtesy.

Pharma lies. That is something I have clear. This HIV-Lite thing is just bad marketing

I have 2 HIV+ friends Very dear to me. I cannot imagine seeing them die because of this virus. That would simply break my heart into pieces. Perhaps driving me crazy

I think of us (+ people) like an ants colony. When they cross a river, those that go in front row, die, setting up a bridge for others behind to cross. Newbies=back ants, Oldies=Front row ants.

I agree with the fact that we MUST keep our eyes and ears open. We have to pay attention to the past. We are idiots if we do not listen the elders.

However, I wanna dream. I wanna dream that they will find more meds, perhaps less toxic, perhaps less pills, and that they perhaps wil bring them to my 3rd world country.

I am sorry, that I am standing on the basis of many that have given their life to this virus. To the stigma, to the loneliness, to the pain. God, it is a life.... hundreds, thousands of lifes. I am sure mine will be one of those as well, latter rather than sooner I hope.

Elders, do not leave us. We are blind without you, we are condemned to perish sooner without you. We will suffer more without you.

My ideas, being a 20-something, gay , in the closet and with HIV.

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 carousel

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Re: A Lament.
« Reply #30 on: March 08, 2007, 03:21:44 PM »
I was diagnosed in 2004, so I suppose that makes me a “newbie”, although that names does not fit in anyway to my experiences.   

I can, of course, only imagine what it was like to watch so many die in such a space of time.  I got to know about HIV and AIDS through the images on tv and what I read in the newspapers.  The closest it came to me was the guy who lived down the road, who ‘looked like’ he had AIDS.  And then suddenly after a year or so, he was gone. 

Coming out at the end of the 1980's, I would see people around who were obviously not well.  I slept with a few men who told me they had AIDS.  Although I talked about, it still felt distant.  Thank God, it wasn’t me.  I was young and looking forward to new experiences.  It just seemed to be about people who were older than me.

There are people here, who have had HIV longer than I’ve had my adult life.  I can only imagine what that’s like. 

When I found this site, first of all lurking and then gradually posting a few messages, I suddenly came into contact with many people with very different experiences from me.  I sometimes disagreed strongly with the views and the opinions expressed.  There are people here, who I feel very close to, even though we’ve never crossed paths and talked.  They have shared their experiences and if they’re having a good or bad time, I do the only thing I know, I empathise with them and what they’re going through.

Drug treatment will not work for everybody and there may be people here, including those labeled newbies, who may be having or will have the shittiest of experiences.  There are people who remain optimistic in the worst of times.  It’s how they deal with this virus. 

I imagine the reason most people come to this site, is that this forum is a chance to share their experiences, have people listen and hopefully offer support.  It’s also a space to get information and also have a laugh sometimes.  It helps me deal with things, however haphazardly I sometimes go about living. 

Unless something changes, I’ve got this virus for life.  We all have.  I hope this site continues to be space where every voice is welcome from the person who has just found out to those who have had HIV long-term.

Offline Grinch

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Re: A Lament.
« Reply #31 on: March 08, 2007, 07:23:25 PM »
As usual....great post Moffie.
I've been thinking about this whole old timer vs Newbie thing for some time. The thought occurred to me the majority of those on the "Old Timers side" are just that, old timers, meaning 45 and older.  The "Newbies" as a whole tend to be younger, 20 - 30 somethings. (Yes I know there are exceptions so please don't point those out and scream flawed premise!)

 Thinking back to my own attitudes at 20...I was bullet proof, I likely would have taken the attitude, "The docs tell me no problem...pop a pill and carry on!"

At 30 now BB Gun proof..... I likely would have said, "A couple pills a day, the shits on occasion I'll take better care of myself...No problem."

In a couple days I'll be 45...Now I'm barely water gun proof.  I say "This thing will eventually kill me, quality of life is down but I'm alive.... I hope those that have done this longer than I have a few helpful hints...."

So maybe part of the "Generation gap" that we experience here is not just how old we are disease wise, but maybe how old we are chronologically as well.

Offline Dennis

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Re: A Lament.
« Reply #32 on: March 08, 2007, 09:06:11 PM »
I always read and reread these threads regarding the old topic of newbies vs oldies and always struggle to decide which side I fall on.  I was diagnosed over 15 years ago so I'm not exactly a newbie.  Yet, I don't know anyone who has died from AIDS and I haven't exactly had any health obstacles that I couldn't overcome, so from the descriptions of an "oldie" on these forums I don't exactly fall in that category either. 

When first diagnosed I had a doctor who was forthright and honest about my diagnosis (as he saw it) and told me with the current medications (I believe only AZT at the time) I only had 10 years at the most to live.  I refused to take meds.  I didn't start taking meds until 2002, over ten years after my diagnosis when my cd4 was 12 and viral load was off the scale. 

My current doctor tells me I'm doing fine (cd4 459 and undetectable), the disease is manageable, and I should expect a full life.  I have not problem with first and current regimen.  And you know what?  I believe him. 

So I ask, who's the fool?  My doctor from 15 years ago, my current doctor, or me?

Offline tigger2376

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Re: A Lament.
« Reply #33 on: March 08, 2007, 09:18:38 PM »
There it is again, 'sides'. oldie VERSUS newbie
I try and appreciate and respect everyones experiences and opinions. Yes, we are not 'all the same', but surely we can learn from anyone who can put forward an informed perspective, or help anyone who asks
I have already said how much Moffies original post moved me. Sometimes yes, those with more experience can just put it absolutely right
We all owe those who have been through the past few years a tremendous debt,and mourn those we have lost
x
I know i'm going to enjoy the party in the afterlife, but do you all mind that I'm going to be VERY late!!!

Offline NycJoe

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Re: A Lament.
« Reply #34 on: March 08, 2007, 09:33:47 PM »
Oldie or newbie..those words just sound ridiculous.  I don't respect one over the other.  Someone with experience brings something to the table.  Someone new brings a fresh perspective and something to learn from also.  I don't care if you have had hiv for 25 years or 25 weeks.  EVERYONE should be valued and no one should be put on a pedestal.  Everyone has a different experience and I like to hear all sides equally..not just one.

Offline Lis

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Re: A Lament.
« Reply #35 on: March 08, 2007, 10:12:50 PM »
show me were it says "newbie"


step OFF
poz 1986....

Offline AlanBama

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Re: A Lament.
« Reply #36 on: March 08, 2007, 10:47:49 PM »
Well NYCJoe, I agree with one thing you say, someone who has had AIDS for 25 years and someone who has had it for 25 weeks would definitely have different experiences.

This is not about "us" vs. "them", and I hate to see that terminology used.

A little respect goes a long way.

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 NycJoe

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Re: A Lament.
« Reply #37 on: March 08, 2007, 11:34:13 PM »
I would say I agree Alan..A little respect for everyone around does go a long way.

Offline Amosboy

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Re: A Lament.
« Reply #38 on: March 09, 2007, 12:39:44 AM »
Firstly, it is only fair that I state the facts as they pertain to the subject at hand in a way that does not involve overt emotional drama.  I am a 21 years survivor of HIV.  Without seeming ungrateful for my longevity in living with this illness, I do not really feel compelled to wave my "21 years of living with this disease flag" as some sort of heroic endeavor or use it as a crutch to rationalize any poor decisions I've made along the way.  It was a shadow that I tried early on to get away from and that proved tiring and quite self-destructive.  Early on, I learned to focus on the world around me with eyes that saw suffering far worse than my own.  Being HIV positive seemed to quickly take a back seat to more tangible and productive thoughts that could offer something more constructive in my life.  I certainly do not want anyone to think that I pushed down the sorrow or fear but I did not let them take the helm of my journey.  I cried at times like a primal creature and allowed myself to emotionally purge without reservation alone and sometimes, in the company of others.

My life never has been primarily defined by my HIV status.  It sort of came up in conversations with people like one would talk about an old football injury.  I do feel extraordinarily fortunate that I have not let being HIV positive rule over my growth as a human being.  I have said this in other posts.  It is more likely that I would want to talk to others here about music, art, and the human condition of expectation.  Granted, talking openly about being HIV positive clears a path for potential trust in a friendship but that is about all it does.

How and where two people take it from there are the real challenges of making bonds beyond the one thing that initially brought us all here.  This is only the first step in listening and communicating with others and deciding if you want to reach out or walk on by.  I often wonder if there is as much fervor and division on other forums that revolve around illnesses.  I think these places are what you make of them.  I have found that the bonds and friendships that I have established here exist way beyond the topic of HIV.  Sure, that subject is always open for discussion but I do not dwell on it or use it as a basis for making lasting, fulfilling relationships.  

I have witnessed many conversations become quite toxic and unsavory.  Believe me, I do not see the world through rose-colored glasses but I have a basic obligation to myself to be a self-preservationist.  If I feel like I'm getting sucked into a situation that basically makes me want to (literally) vomit, then I turn and walk away.  I often question myself (mostly) about the reasons why I post here.  Am I looking for attention?  Do I want to be validated?  Am I just letting myself think freely without the expectation of a response?  If I am truly bothered by something, is this the most productive and reasonable place to incite change? Or am I just looking for a kindred spirit?

In all honesty, I tend to be a creature of self-imposed, emotional uncertainty, seeking acceptance from the world.  I spend too much time analysing my actions, when what I really aspire to do is just be free to be me.  I want to see the similarities I have with people around me.  Any emotionally based experience can only be pure truth to the one who actually feels it.  If it is grounded in another person's heart, then how can debating such issues ever really find resolve.  

People can never truly know others' emotions as their own; however, I think it is within every person's ability here to see some slight commonality with others on some level.  Perhaps, even the most subtle of adjustments can have the greatest impact on the general morale of the forums.  

No love = No enlightenment
Know love = Know enlightenment
No loss = No enlightenment
Know loss = Know enlightenment

And for the record, yes, that just came out of my head!

Brooks

    
    
« Last Edit: March 09, 2007, 12:48:41 AM by Amosboy »
"Love isn't love unless it's not painfully absurb."

-Charlotte Martin

Offline jkinatl2

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Re: A Lament.
« Reply #39 on: March 09, 2007, 12:53:22 AM »
Thing is, when people post statements that impugne the character of the infected and affected, feathers get ruffled.

When someone who has NOT been on meds for a decade, has no experience with the beurocracy and the duplicity of the professional medical system, ventures to make statements like "Just take your medicine and you will be oK." It does two things. Okay, three.

1) undermines prevention efforts. If its no big deal, why bother preventing it?

2) Discounts the real and valid experiences of those who have been on these same meds, and have experienced side effects or long term disabling effects.

3) further stigmatizes those who are sick and in real pain (I differentiate, with apologies to those suffering from depression and other psychological difficulties, between physical suffering and emotional suffering in this single regard) by insinuating that AIDS is a character flaw. Meaning those who develop it were not "good" patients, did not take their meds on time, were not compliant, et al. Many of us toed the party line insofar as meds are concerned for years. Some of us still manage, despite debilitating, humiliating, and disfiguring effects which CANNOT be dismissed... yet so often are.

The meds available today are slight improvements over the meds available ten years ago, when HAART came online. Kaletra, for example, is much more tolerable. However, other meds like AZT, often bundled with the newer meds, is still the same toxic substance it was twenty years ago. Lowr dose? Absolutely. It no longer kills outright. But it does a number on those who take it, from lipo to an undeniable link with certain kinds of cancer of the blood and bone marrow.

Respect goes a long way.

Some of us simply do not buy the salemanship of the medical community without serious investigation. Call us skeptics. But by this time, many of us are simply too wary, having seen "cure" after "cure," and "Vaccine" after "vaccine" come and go with little fanfare.

Those of us who are sick from this illness, who might well die from it, really resent not only the dismissal of our experiences, but the implication that we bring it on ourselves due to "failing" the drugs.

That's the lack of respect I have witnessed on these forums.

And the thing is, this has NOTHING to do with optimism or hope. Hope which is not grounded in experience is simply wishing without substance. Despair without grounding in reality is the SAME THING, albeit the dark version. Both departures form reality remove the subject from the realm of the quantifiable, and give tacit permission for 1) unadulterated self pity, 2) recrimination of others, or 3) both.

Nothing gives anyone here, old timer or newly diagnosed, permission to be a jerk to others. Nothing we go through obligates this community to support active and using drug addicts. Nothing in the realm of HIV infection suggests that encouraging or sanctioning hysterics plays ANY positive role in the long term management of this disease.

Who am I to say that the emotional trauma associated with a person's first labs, first blood draw, first doctor's appointment post diagnosis is less agonizing *for that person* than, say, someone diagnosed with KS, or whose thirteenth med regimen has failed to work. It takes a special strength to endure an HIV diagnosis. And frankly, some folks freak out over a hangnail. I do not discount the freaking out. I simply cannot give the hangnail the same power.

There is a newfound, shrill voice among the newly doctored. And I blame the doctors, the media, and the small but incessantly ego-driven bunch of scientists (*cough* David Ho *cough*) who prepetuate this illusion about HIV.

Thing is, many of us KNOW about blood warming already. We've TRIED all the vitamins and supplements already. A cursory study of the history of the pandemic would illuminate all that. We GET that the new drugs are great. Thing is, what I require is quantifiability.

Show me the astonishingly high percentage of those who take Atripla for ten years without adverse side effects. Show me the percentage of people who have already lived 50 or 60 years wit the virus. Show me a study where Noni Juice and Selenium prevent progression to AIDS.

Moreover, show me where this virus behaves in an identical manner with a broad spectrum of the population. Same with the meds used to treat it.

That's the sort of thing that only long research can deliver. And in many of the scenarios just posted, the research - the studies - the drugs - are all just too new to be of any real use.

Two things I have learned.

A) Patients lie to doctors. And, of course, themselves, and to online bulletin board forums.

B) Doctors lie to patients. More to get them out of the clinical office, partially because many if not most ID specialists have little psychological training.

Despair is a drug. So is denial. Both ends of that spectrum serve no one well, and both impugne the character of someone who exists as an example of the fallacy.

Maybe it IS, to a degree, a generational gap. But it is primarily, I suspect, an experiential gap. Someone who has seen this thing through twenty years from the inside will have a GREAT deal more insight into stuff as varied as insurance issues, disability, drug treatment, doctor visits, and political strategy. Thats simple fact. God/dess knows I would not have learned in depth about ANY meds I was not taking, or being offered.

We are supposed to be here to supplement one another's admittedly incomplete knowledge of HIV, and the methods used to treat/manage it.

We owe a great debt to the dead... and please believe me, I have a list of names myself. I simply lack the strength of character to post their stories here. Plus, not nearly enough tequila in the apartment for my own emotional fallout.

We also owe a great debt to the living. Those who suffered horribly through the first gen Kaletra, those lucky few who survived the toxic doses of AZT, those who still fight the ravages of Sustiva and Viread and D4T and Invirase.

Ravages of Sustiva? No way.  Except if you have a chemical imbalance that precipitates a depressive state. Every had a psychotic break? Far less fun than television would have you believe.

Thing is, I personally appreciate the optimism and gung-ho attitudes from the newly infected. But I LEARN from those who have been there and done that, from dealing with difficult doctors to insurance issues to when you need to run, not walk to the emergency room because that mild rash is really SJS, and you could die in agony if it is not treated.

This is not about who made the better captain, Janeway or Sisko. It's about life and death. Not life OR death. Because some of us WILL DIE from this, despite the rosy outlooks and the sweeping statements.

Janeway, BTW. Which is sad to say because I loved DS9 much more than Voyager. She simply had a more cohesive, and less conflicted style.

I am just saying.



"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Jeffreyj

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Re: A Lament.
« Reply #40 on: March 09, 2007, 02:15:36 AM »
jnkinatl2:    I want to thank you for that beautiful post. You have touched on many things that I feel, but are unable to put into words.

It made me feel good that someone really and truly understands most of what I have been through. And that made me feel good.

I have been unable to work for years, and it is easy to get down, and to feel less important then I used to be. The fact that you are aware, and care about what us long timers have been through, means alto to me. And feeling good doesn't happen like it used to.

So thank you from the bottom of my heart. As the tears are rolling down my face, I'll leave it at that.
Positive since 1985

Offline Bucko

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Re: A Lament.
« Reply #41 on: March 09, 2007, 02:32:58 AM »
jnkinatl2:    I want to thank you for that beautiful post. You have touched on many things that I feel, but are unable to put into words.

It made me feel good that someone really and truly understands most of what I have been through. And that made me feel good.

I have been unable to work for years, and it is easy to get down, and to feel less important then I used to be. The fact that you are aware, and care about what us long timers have been through, means alto to me. And feeling good doesn't happen like it used to.

So thank you from the bottom of my heart. As the tears are rolling down my face, I'll leave it at that.

If we buggy ole fux don't stick together, who'll stick up for us anyway?

I bow to JK, master of the keyboard...

Brent
(Who sits in awe)
Blessed with brains, talent and gorgeous tits.

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

Blathering on AIDSmeds since 2005, provocative from birth

Offline David_CA

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Re: A Lament.
« Reply #42 on: March 09, 2007, 06:47:31 AM »
You know, a lot in this thread makes me realize how little, if any, respect members here should have for me.  After all, I've only known I'm HIV+ for a little over a year, have only had one OI, have had an AIDS diagnosis for 3.5 months, been on one regimen that's working well, have tolerable side effects, am not stuck in the bathroom for hours on end, am still working, and have insurance.  I'm curious as to how long I have to have this HIV and AIDS diagnosis before I'm worthy of respect.  How many failed regimens or OI's do I have to go through before I earn this respect that's spoken about here?  How low do I have to fall before I'm respectable?  The funny thing is, some people here on the forums and in my 'real' life respect me.  Maybe they're just confused, or maybe I've somehow helped them in some way.

See, to me, respect is not automatic.  You don't get it from me simply from what you've been through.  You'll get courtesy from me automatically, that's all.  You earn respect from what you do with your life experiences and knowledge. 

Does the unemployed homeless man with a habit supported by breaking into cars and purse-snatching deserve more respect than the 24 year old waiting tables to make ends meet while earning her masters so she can teach emotionally challenged children?  Sure, he's been through more and has a life that none of us would want.  He can tell us about sleeping on the ground in the cold.  He has problems, that's for sure.  But respect? 

No, respect is earned.  Some of those who've had it relatively easy and those who've gone through hell with this disease have my respect.  Some who have been diagnosed 2, 5, 10, even 20 years ago have earned it; others haven't.  Let's lose this feeling of entitlement of respect and do what we can to earn it; that benefits all of us.  After all, who wants to listen to the grumpy old man who lost a leg in the war?  The warmhearted grandmother who's understanding and quick with a hug gets my vote every time.  Take care.

David

(edited to correct those damned typos)
« Last Edit: March 09, 2007, 12:43:25 PM by David_NC »
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline dtwpuck

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Re: A Lament.
« Reply #43 on: March 09, 2007, 08:22:09 AM »
 David... I think you're on to something here.  Too many people on this board play the "more experienced than thou" game.  This board is here to support everyone with hiv.  And, as in most social mixes, you have a wide variety of people who feel their experience is the most important one. 

It's not about hiv.  Old and young people don't relate to each other.  Blacks and whites.  New seroconversions / old seroconversions.  Me and You.

Like it or not, foot stomping and the "but what about me's" to the contrary... the face of AIDS has changed.  The dynamic has changed.   i should be dead, but I'm not.  I probably will die of heart disease or diabetes to be honest.  David and Woods, your experiences are statistically more likely to be the similar to the experience of the majority of people who have seroconverted in the last decade.  That's that.  Of course there are exceptions, lots of them, this is why we are afraid, but even so, contributions you would make to this board would be invaluable.

Likewise, gentlemen like Moffie and Jonathon have huge experience, an riveting and actualized outlook, which should not be ignored.  They are eloquent and emotional.  We all can learn something about what this disease is like long term.  You can learn about what it is to be human.  And you can be thankful they have the gift and desire to share.

It chaps me when we all get into a pissing match where "it's raining harder where I'm standing".
It's not.
Even if it was, you'd still be wet.

This forum is the towel.
I don't care if I get the towel from the old guy or the new guy.

We all have something to contribute.  Let's all get off our soapboxes and just get down to the business of helping each other deal.  Listen.  Keep and open mind.

If someone is coping by keeping up a positive attitude and you think that's naive... find a way to say it that's not going to belittle their feelings.   If someone is coping by listing off all the people they've known who have died.. well, part of life is dying.. part of love is memory... and part coping is talking.  Listen.  Keep an open mind.

And if you don't know how to help someone...  well then read what others say and maybe you can learn something.






*** edited out one little typo
« Last Edit: March 09, 2007, 10:12:07 AM by dtwpuck »
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline skeebo1969

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Re: A Lament.
« Reply #44 on: March 09, 2007, 08:30:34 AM »


  Puck...  So true and very well said.

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

Offline David_CA

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Re: A Lament.
« Reply #45 on: March 09, 2007, 08:47:50 AM »
Puck, very nicely stated.  Compared to the grumpy old man or the sweet grandmother, I'll probably be the horny old man having fun , hopefully at the gay / nude campground (there's nothing like seeing naked old men running/ hobbling/ walking around in the woods!  LOL  ;D ).

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

Offline dtwpuck

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Re: A Lament.
« Reply #46 on: March 09, 2007, 08:49:21 AM »
Puck, very nicely stated.  Compared to the grumpy old man or the sweet grandmother, I'll probably be the horny old man having fun , hopefully at the gay / nude campground (there's nothing like seeing naked old men running/ hobbling/ walking around in the woods!  LOL  ;D ).

David
   Hmm  there are woods behind my house.
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline David_CA

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Re: A Lament.
« Reply #47 on: March 09, 2007, 08:51:42 AM »
   Hmm  there are woods behind my house.

And I'm not an old man yet, at least my my definition, but I do love some fun in the woods!   ;D
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
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Offline NycJoe

  • Member
  • Posts: 241
Re: A Lament.
« Reply #48 on: March 09, 2007, 09:50:40 AM »
                       
Quote
Too many people on this board play the "more experienced than thou" game.  This board is here to support everyone with hiv.  And, as in most social mixes, you have a wide variety of people who feel their experience is the most important one.  We all have something to contribute.  Let's all get off our soapboxes and just get down to the business of helping each other deal.  Listen.  Keep and open mind.

If someone is coping by keeping up a positive attitude and you think that's naive... find a way to say it that's not going to belittle their feelings.   If someone is coping by listing off all the people they've known who have died.. well, part of life is dying.. part of love is memory... and part copying is talking.  Listen.  Keep an open mind.

Puck. that is the best post in this entire thread.  I could not have stated it better myself.  Joe

Offline AlanBama

  • Member
  • Posts: 3,613
  • Alabama: the 'other' 3rd World Country!
Re: A Lament.
« Reply #49 on: March 09, 2007, 11:04:22 AM »
Jonathan, as usual, says precisely what I am thinking/feeling but am unable to put in to words.   I remain in awe of your writing abilities, dear friend.

David, I certainly respect you.   You are a gentleman, who is handling having AIDS with intelligence, decency and humility.

Well stated, Puck.
"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

 


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