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Author Topic: "newbie" perspective  (Read 2759 times)

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Offline mecch

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"newbie" perspective
« on: October 03, 2009, 08:09:43 AM »
We can all make a long list of the many ways having HIV sucks.

This post is about fear of HAART.  

I came out in the 80s when there was no treatment.
Then in the 90's there was sucky treatment.

I have to say, taking HAART is one of the less sucky things about having HIV for me.  HIV+ less than 2 years. On HAART now about a year.  Doctor found the successful HAART after two false starts.  Insurance pays. Dont know the long term consequences of HAART but minimal for the moment.

My point - is there some way to get that message out to the public without doing damage to safe sex campaigns and the fear motivation for prevention?

I mean, so many people in this forum express their fears about taking HAART but then we hear the opposite story -- that many gay guys at least think you can just pop a pill and you are fine, if you do something risky.  

I'm glad my doctor was pretty clear about HAART when I was sero-converting.  I'm glad people here express their experiences that help lesson the fear and anxiety of going on HAART these days.

Share your thoughts.


« Last Edit: October 03, 2009, 08:11:48 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline the trebmeister

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Re: "newbie" perspective
« Reply #1 on: October 03, 2009, 09:02:48 AM »
oh, lord...

you may have just kicked a horse so dead it's a can of glue filled with worms inside a pandora's box.  probably a few gremlins and poltergeists in the midst, too.

i'm an oldie -- if i'm correct i contracted HIV in late 1982 (and put the icing on the cake in early 1983 with the same guy visiting him in houston -- but i did come home 2 days before bette midler's appearance here so it was all worth it.)

some of us in the "we remember ronnie raygun" camp are a tad concerned that ANYONE might consider HIV infection a "manageable chronic illness" which is NOT what you said but like polly that's all i hear. 

yes, of course we want to re-assure the newly infected/affected that HIV/AIDS is not like it was for us westerners (?) in the early days BUT since the V in HIV is virus (and very groovily retro at that) we really haven't a CLUE what happens at 30, 40, 50+ years.  for all i know i may melt by my 30th year of infection.  (if i do i'd like my sludge to be placed in the same urn my late dog lucy's ashes are in, please)

we don't know yet what will happen at these milestones and even with (somewhat justified) optimism no one, you, me, or anyone else, would minimize the need for safer sex and avoidance of infection.  since we're dealing with other humans, however, we know infections will continue to occur.   rather a double edged sword, of sorts.  i guess.  lemme be up front and personal -- when i meet people who are newly infected a teeny part of me cries or dies or does something in between.  one one hand we all make mistakes -- i sure as hell did and continue to do so.  on the other hand 2010 will approximately mark the 30th anniversary of HIV as a public health problem and part of me wonders how new infections occur when we know how to prevent or greatly minimize risk.  but then we gotta return to the first point: we're humans.  very few of us are perfect -- in fact by my count only i and dale rogers (nee' evans) meet the "perfection" standard, but i tend to be a stickler for all matters equestrian... i don't know what that means either but sleep deprivation can be very debilitating for the vertically challenged much less creatures such as moi.



 

if i were capable of thought i might be able to expand on my expansiveness but it's 7:40AM and i haven't gone to sleep yet. 

rip it to shreds, me panties.

 
Your friends may say that I’m a stranger
My face they’ll never see no more
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I’ll sail on God’s golden shore

Offline mecch

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Re: "newbie" perspective
« Reply #2 on: October 03, 2009, 09:46:33 AM »
The fear and ignorance about current HAART keeps some people with unknown status from testing. Keeps some people who are HIV+ away from HAART for much longer than science recommends.

Fear of HIV should not be confused with fear of HAART. 

I don't think this is a dead horse. I think the public can't handle complicated nuanced messages. 

“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline ruralguy

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Re: "newbie" perspective
« Reply #3 on: October 03, 2009, 10:04:16 AM »
I'm only 3 months HIV+ and less than a month on meds.

I guess I think testing should be easier to find (all STD testing).  Perhaps it should be part of every normal physical exam and the related blood work.  And I guess fear of the meds should be reduced too.  The facts seem to be that fearful untested people are the people who are most likely to spread the disease.  People who tested positive and are are meds seem to be among the safest.  Simply put, more people on meds means fewer infected people.  This is how things are going in Africa, for example.

The history of the disease, the history of the meds, and its continuing stigma are worse than the meds and part of what keeps people away.   

So those are some thoughts from a newbie.  I could be argued to another position as I'm certainly new at this.
tested positive June 19, 2009
7/3/09 vrl 9000 cd4 - 300
8/14/09 cd4 - 350, 20%
started Atripla 9/14/09
10/5/09 vrl undetectable, WOW so fast!
12/28/09 vrl undetectable, CD4 - 615  27% cholesterol down, kidney function normal
4/26/10 vrl undetectable, CD4-600, kidney and liver numbers normal
9/9/10 vrl undetectable, CD4-685
1/3/11 vrl undetectable, CD4-700
all 2011 and Jan 2012 visits vrl undetectable CD4 ranged from 715-645
5/7/2012  vrl undetectable, CD4-615, all liver, kidney, lipids, heart functions, etc normal


On Atripla:  "Your mileage may vary"

Offline Assurbanipal

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Re: "newbie" perspective
« Reply #4 on: October 03, 2009, 11:11:03 AM »
The fear and ignorance about current HAART keeps some people with unknown status from testing. Keeps some people who are HIV+ away from HAART for much longer than science recommends.

Fear of HIV should not be confused with fear of HAART. 

I don't think this is a dead horse. I think the public can't handle complicated nuanced messages. 



Fear and ignorance of HIV, lack of (knowledge) of a convenient testing site, bad timing.  Sure those were in the way of testing .

But fear of HAART didn't register.
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Inchlingblue

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Re: "newbie" perspective
« Reply #5 on: October 03, 2009, 12:22:13 PM »
Of course having HIV isn't a walk in the park but in this day and age it's true that if caught early enough (before it's wreaked havoc on the immune system) it can be controlled with good meds that are very tolerable.

I keep reading about the need for more people to get tested etc but, at least in the US, what will be done when many of those people who get tested on "National HIV Testing Day" or some such other promotion, actually test poz and then need meds and health care in general? Most Ryan White programs are barely able to make it and quite a few of them are in fact not making it, reducing their formularies, revising their eligibility criteria and instituting waiting lists.

The biggest fear about having HIV in this day and age (if it's caught early enough), no matter what part of the world one is in, is the fear of not having access to quality health care and to the (super expensive) medications.

 

Offline Miss Philicia

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Re: "newbie" perspective
« Reply #6 on: October 03, 2009, 12:34:18 PM »
There is always a subset of diagnosed newbie HIV'ers that fixate on (mostly) outmoded preconceptions of HAART based on what they saw 10 years ago in other gay men -- generally it's the fear of lipo and/or wasting, generally meaning being further stigmatized (speaking for gay men) within their own community.  A lot of this is very subliminal, but after years on this board I've seen it over and over and over.  It's like they go to the doctor's office and see some old troll like me with sunken cheeks and they don't "get" (or they get it but still allow generally illogical thinking to take over) that what they are seeing are the results of medications taken in the early 90's that either aren't even on the market anymore (Hivid) or are not widely prescribed currently (Zerit).

What's so tiring and tedious is that you can explain this repeatedly and they still remain utterly petrified of commencing treatment to the point where they delay much past the appropriate treatment guidelines.  They sit there and hover over the LTS section of the forum and extrapolate these experiences as somehow being relevant to a newly diagnosed patient. 
"I’ve slept with enough men to know that I’m not gay"

Offline mecch

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Re: "newbie" perspective
« Reply #7 on: October 03, 2009, 05:57:14 PM »
So well put Miss P.
What is the way out of this?
And yes, as others mentioned, fear of HAART also includes fear of not being about to pay for it!
« Last Edit: October 04, 2009, 10:27:55 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline the trebmeister

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Re: "newbie" perspective
« Reply #8 on: October 03, 2009, 09:13:48 PM »
...

I don't think this is a dead horse. I think the public can't handle complicated nuanced messages. 


sorry, wasn't what i meant -- on the forums i've seen past contretemps with oldies saying "you're too young (so to speak)" and newbies saying "you're too old & stuck in a time warp!"  glad to see the discussion hasn't degraded into a pissing match.
Your friends may say that I’m a stranger
My face they’ll never see no more
There is but one promise that’s given
I’ll sail on God’s golden shore

Offline Ann

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Re: "newbie" perspective
« Reply #9 on: October 03, 2009, 09:49:36 PM »
glad to see the discussion hasn't degraded into a pissing match.

Give it time...
Condoms are a girl's best friend

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

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

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

Offline Rev. Moon

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Re: "newbie" perspective
« Reply #10 on: October 03, 2009, 10:17:53 PM »
Give it time...

Unfortunately this topic is one that does eventually turn into a debacle instead of a healthy debate.  

Just for the record, Mecch, I completely agree with your initial point and intent.  Part of the problem for those who fear testing and/or initiating HAART is simple lack of knowledge and context.  It's interesting how most of the negative people I know believe that HIV has become a pop-a-pill a day and everything is peachy forever (which in turn is quite damaging to prevention); I find this to be quite aggravating because it minimizes many issues that people who do have HIV/AIDS to face regularly.

And then there are those who are positive and act like bundle of nerves, fears, and dis/misinformation (focusing more on side effects that may no longer occur in today's day and age instead of making their health better).  I think Philly expressed it best in his reply, so I will leave it alone.

"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline risred1

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Re: "newbie" perspective
« Reply #11 on: October 07, 2009, 12:22:34 AM »
What I question is the perception that part of the prevention campaign is that treatment sucks.

These are two separate ideas.

But I have witnessed preventionists making outrageous statements of what HIV is, what the result will be, that the treatment is toxic, and that we will frequently die alone and friendless.

The use of fear is an all to easy tool to try to drill home a message. But as many of us know, fear based approach to prevention has its limitations.

How do we then deal with the message post sero-conversion? Well, we either learn to live with HIV or we don't or something in between. Some of us will suffer significantly more than others. Many have suffered and died. So this is not a simple act of acceptance that we should not be so afraid of treatment when we scan the boards and become discouraged by News Watching and observing the potential issues associated with treatment.

I also believe that its is a significant Demarcation in ones infection. When we no longer can control the virus sufficiently by our own means. We are frequently told to wait until that moment by our doctors. But for many of us, me included, have gone for several years without needing treatment. So we might delay a bit to long, hoping for a rebound or some supplement or lifestyle change that "might do the trick". Others may simply so fearful of this demarcation point, as it means we have to surrender to something beyond ourselves in order to improve the quality of our lives.

Regardless of the view, be it fear of because what we perceive or been told, or because that demarc and dependence on medication is psychologically impacting, we ultimately have to surrender our trust to something else and hope that we aren't the unfortunate percentage of folks who have issues.

To be able to trust, believe or hope in things is up to the individuals makeup.

To illustrate.

A long time ago I went rock climbing with other people to try it out. The gyms trains you how to do it, and most importantly how the safety rope works. The person on the floor protects the person climbing by controlling the safety rope, taking up slack and preventing a person from falling. Part of the training is for the person climbing, to go to the top of the climb, about 15 feet off the ground and let go of the wall, and let the person on the floor lower you down safely.

For  some, letting go of the wall was an easy thing to do. For others, it was the hardest thing to do. And its not always easy to predict how one would react, until your in that situation.

The point is, going on meds is a bit like letting go of the wall. No matter what our doctors tell us, what the forum says about how the new meds are working and how well, we still may have that trepidation.

Experience for some is the only teacher one will accept. You said yourself, you were afraid of meds, and now after a year, your wondering why?

All one can do is provide what their experience was, and those trying to decide have to learn to trust something they may not want to. The more folks say that transition to meds wasn't a terrible experience, the easier as a whole folks will have in accepting that information. But not everyone. All one can do is tell your story. Maybe that will help others let go of the wall and do what needs to be done.

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Offline mecch

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Re: "newbie" perspective
« Reply #12 on: October 07, 2009, 06:01:43 AM »
Give it time...

Ha, finally look how civilised we can be!
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline newt

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Re: "newbie" perspective
« Reply #13 on: October 09, 2009, 03:02:27 PM »
Quote
is there some way to get that message out to the public without doing damage to safe sex campaigns and the fear motivation for prevention?

People aren't really having safe sex in quantities, I don't think there's a problem saying good about treatment

- matt
"The object is to be a well patient, not a good patient"

Offline aztecan

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Re: "newbie" perspective
« Reply #14 on: October 09, 2009, 10:57:41 PM »
It's like they go to the doctor's office and see some old troll like me . . .

Now darlin, you're not an old troll. I'm sure you still turn heads when you want to.

As for this debate, I hear it a lot. People are still afraid of lipo (that's why there is an entire forum dedicated to it here.)

For that reason, they don't want to start meds, or even get tested.

At the same time, there is another camp that believes living with HIV is like having a hangnail. Take a pill and carry on like its 1979 all over again.

But, whether they are fearful or nonchalant, many people still bareback. I'm talking about both gay and straight people, as the straight porn industry in California has ruefully found out.

There is no real answer.

HUGS,

Mark

"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

 


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