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Author Topic: Adherence and the curious crowd  (Read 8826 times)

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Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Adherence and the curious crowd
« on: August 15, 2007, 10:31:10 AM »
We had a program presented by Abbott Pharmaceuticals here last night. The topic was adherence and transmitted resistance.

It was a pretty good program and the person presenting it was knowledgeable about the meds, adherence issues and some of the difficulties faced by people taking the meds.

The one thing I found interesting is the people who attended. I invited everyone I knew who is living with the bug, in the neighborhood of 40 people.

So, who showed up? The long-termers. The young kids and the recently infected stayed away. I had even spoken to a few of them about it after mailing the invitations and some seemed interested.

Abbott provided dinner for the event. I thought even if they weren't really gung ho on the topic, they might show up for a free meal.

But, only us old timers, so it was rather like preaching to the choir. But we did get some good information about some of the new drugs now in the pipeline, which I thought interesting.

But the whole scenario made me curious. Why just the old timers?

Anyone have a take on this? I would like to see what I can do to better engage the young, the newly infected or those who would rather live in a state of blissful ignorance.

HUGS,

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

Offline AlanBama

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Re: Adherence and the curious crowd
« Reply #1 on: August 15, 2007, 11:53:25 AM »
Mark,

The turnout for this is interesting....

I signed up for a "study" once, about adherence....it was so silly, because they didn't want to acknowledge that someone could actually have sense enough to fill a weekly pill box...they insisted on issuing these caps that counted the number of times they were removed...I had to bow out of that one, there is no way I am unscrewing that many bottles 3 times a day.

hugs,
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 woodshere

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Re: Adherence and the curious crowd
« Reply #2 on: August 15, 2007, 01:27:01 PM »
 For the most part the twentysomething crowd  has different priorities.  Look at voting, that age group overall is the worst.  Organizations that require volunteers ususally have better luck recruiting with  those in their 30's and up. I am in a poz group and most of our members are 40+ and/or long timers.  We have a young 'un show up every so often, but they seldom come back or become very active.  Of course there are exceptions, but overall I just think it is an age thing.

Woods
"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 sdcabincrew74

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Re: Adherence and the curious crowd
« Reply #3 on: August 15, 2007, 01:35:03 PM »
It may or may not be an age thing.  For the young ones/recently infected maybe they have a hard of time getting their "hands" around all this and it is easier to ignore it sometimes.  Or, maybe the "one pill a day" mentatility
The difference between an overnight and a layover is luck!

Offline Iggy

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Re: Adherence and the curious crowd
« Reply #4 on: August 15, 2007, 02:17:04 PM »
The
It may or may not be an age thing.  For the young ones/recently infected maybe they have a hard of time getting their "hands" around all this and it is easier to ignore it sometimes.  Or, maybe the "one pill a day" mentatility

I'm leaning towards this thought as well...though I do think the younger (in age) of the newly infected are even more likely to follow that rationale as many came of age after the "manageable" or "chronic conditions" monikers started making the rounds.



Offline Funkengruven

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Re: Adherence and the curious crowd
« Reply #5 on: August 15, 2007, 02:58:32 PM »
I would have to agree with woodshere that part of it may have to do with a difference in priorities.  Among the newly diagnosed and HIV+ 20 to early 30 somethings that I have had experience of meeting and working with, most of them seem to be far more interested in attending the type of events where they can be social, connect with other HIV+ individuals and build strong social and supportive networks.  An interest in educational forums, presentations and lectures may come in time.  The challenge, as one who has had to put together such activities, is to find a way to blend both education and a lively, social atmosphere in such a way that the event is appealing to everyone.  It's hard as hell, but when you see room full or people ranging in age from 22 to 55 engaging in conversation and sharing experiences, it's well worth the effort.

Offline redhotmuslbear

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Re: Adherence and the curious crowd
« Reply #6 on: August 15, 2007, 03:28:07 PM »
I'm curious:  did the Abbott folks explain the development of resistance in an accurate model that doesn't demean people who are not 100-percent compliant?  By that I mean, did they explain that HIV is notoriously slopping in making copies of itself and that a small fraction of a percent of copies carry some mutation that will confer resistance to a class of drugs?  That taking that class of drugs will not kill the new line of virus with the favorable mutation that emerges, so another class of drugs needs to be present?  Yet, some virus can eventually have mutilple mutations that will let it slip past two or more classes of drugs, even if the host is fully adherent to the drug regime?

I am increasingly intolerant of medical professionals and drug sales people who set HIVers to believe that they personally are "failures" because their hosted virus wins in the incredible game of chance of taking antiretrovirals.

Peace,
David

P.S.  As for the younger crowd, they are more worried about getting laid and less worried about the "long game."
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

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

Offline Atripla_User

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Re: Adherence and the curious crowd
« Reply #7 on: August 15, 2007, 04:03:59 PM »
I'm curious:  did the Abbott folks explain the development of resistance in an accurate model that doesn't demean people who are not 100-percent compliant?  By that I mean, did they explain that HIV is notoriously slopping in making copies of itself and that a small fraction of a percent of copies carry some mutation that will confer resistance to a class of drugs?  That taking that class of drugs will not kill the new line of virus with the favorable mutation that emerges, so another class of drugs needs to be present?  Yet, some virus can eventually have mutilple mutations that will let it slip past two or more classes of drugs, even if the host is fully adherent to the drug regime?

I am increasingly intolerant of medical professionals and drug sales people who set HIVers to believe that they personally are "failures" because their hosted virus wins in the incredible game of chance of taking antiretrovirals.

Peace,
David

P.S.  As for the younger crowd, they are more worried about getting laid and less worried about the "long game."

you hit the nail on the head, it doesn't mean they don't care, but they just don't want to go to these meetings. They still want to get the information, but perhaps from here, or their doctor, or other places.

Offline thunter34

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Re: Adherence and the curious crowd
« Reply #8 on: August 15, 2007, 04:05:39 PM »
To be fair to the young ones, it was a good year or so into diagnosis til I was ready for an adherence seminar or the like.  And at 36, no spring chicken here.  Rapidly becoming an old hen.

There's an awful lot to process and learn for the newly diagnosed- just about what your initial numbers mean (wiral load?  CD4's?  CD8's??  percentages??  what??) and what all the meds are and what to expect from them in terms of side effects and such.  Not to mention all the time either on or hunched over a toilet yacking your brains out once you start taking them.

And all of this on top of the inital  Holy Fucking Shit mental and emotional adjustment to the diagnosis.  I needed hope by the barrel full when I got diagnosed.  If it was grasping at straws, I still wanted a fistful of 'em.  They told me how to take the meds and NOT TO MISS A DOSE.  That's all I wanted to know right then.

It was enough to accept that I now had a treatable- but still potentially fatal- disease.

The last thing I wanted to chit chat about was how my meds might fail.

AIDS isn't for sissies.

Offline Atripla_User

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Re: Adherence and the curious crowd
« Reply #9 on: August 15, 2007, 04:13:41 PM »
To be fair to the young ones, it was a good year or so into diagnosis til I was ready for an adherence seminar or the like.  And at 36, no spring chicken here.  Rapidly becoming an old hen.

There's an awful lot to process and learn for the newly diagnosed- just about what your initial numbers mean (wiral load?  CD4's?  CD8's??  percentages??  what??) and what all the meds are and what to expect from them in terms of side effects and such.  Not to mention all the time either on or hunched over a toilet yacking your brains out once you start taking them.

And all of this on top of the inital  Holy Fucking Shit mental and emotional adjustment to the diagnosis.  I needed hope by the barrel full when I got diagnosed.  If it was grasping at straws, I still wanted a fistful of 'em.  They told me how to take the meds and NOT TO MISS A DOSE.  That's all I wanted to know right then.

It was enough to accept that I now had a treatable- but still potentially fatal- disease.

The last thing I wanted to chit chat about was how my meds might fail.





Exactly, chit chat is probably the last thig you want to do, no matter what your age. It is fair to say, years go by before people adjust to being able to outreach, they need to be able to digest everything, and it aint easy. This is a start, right here to talk and listen, Thanks Aztec for sharing what you learned, and to Muscle Bear too !!

Offline AustinWesley

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Re: Adherence and the curious crowd
« Reply #10 on: August 15, 2007, 04:17:06 PM »
We had a program presented by Abbott Pharmaceuticals here last night. The topic was adherence and transmitted resistance.

It was a pretty good program and the person presenting it was knowledgeable about the meds, adherence issues and some of the difficulties faced by people taking the meds.

The one thing I found interesting is the people who attended. I invited everyone I knew who is living with the bug, in the neighborhood of 40 people.

So, who showed up? The long-termers. The young kids and the recently infected stayed away. I had even spoken to a few of them about it after mailing the invitations and some seemed interested.

Abbott provided dinner for the event. I thought even if they weren't really gung ho on the topic, they might show up for a free meal.

But, only us old timers, so it was rather like preaching to the choir. But we did get some good information about some of the new drugs now in the pipeline, which I thought interesting.

But the whole scenario made me curious. Why just the old timers?

Anyone have a take on this? I would like to see what I can do to better engage the young, the newly infected or those who would rather live in a state of blissful ignorance.

HUGS,

Mark


Hey Mark,

I'm NOT surprised!  There have been some events here and it's been very similar.   Now, at one recent deal a 21 year old guy showed up and low and behold the older crowd couldn't resist picking up on him and making him feel extremely uncomfortable.   I doubt we'll see him again, but hope we do.

There is a RIFT between the newly infected and the long time folk which I don't get.  Part of it is the know it all attitude expressed by some, part of it is the bitter and jaded crowd.

Newly diagnosed people are afraid and I'm NOT surprised they don't want to be inundated with horror stories and hearing about the 100 funerals someone went to 25 years ago.

Mind you, this is not how I feel and it's merely and observation of some of the issues I've encountered over the last year and a half.

Thanks for bringing up this important topic.   Let's hope people have some ideas and productive solutions for creating a more unified and united community.

Hugs,

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline Miss Philicia

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Re: Adherence and the curious crowd
« Reply #11 on: August 15, 2007, 04:19:53 PM »
Now really... You think these 20-somethings  want to be around the Old Folks?  How would they score phone numbers?
"Iíve slept with enough men to know that Iím not gay"

Offline thunter34

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Re: Adherence and the curious crowd
« Reply #12 on: August 15, 2007, 04:20:28 PM »


Exactly, chit chat is probably the last thig you want to do, no matter what your age. It is fair to say, years go by before people adjust to being able to outreach, they need to be able to digest everything, and it aint easy. This is a start, right here to talk and listen, Thanks Aztec for sharing what you learned, and to Muscle Bear too !!


To that end, I would add some praise for this site.  It makes a stellar reference point because the information is here- in printed form and can be accessed and referred back to time and again if people forget points here and there.  
AIDS isn't for sissies.

Offline keyite

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Re: Adherence and the curious crowd
« Reply #13 on: August 15, 2007, 04:27:24 PM »
I probably would have gone (hey, it's a free dinner and a good opportunity to meet other poz people), but the subject wouldn't really have enticed me because I'm not yet on meds. And therein lies the nub, I think. Few newly diagnosed need go onto meds straightaway and prefer not to ponder the subject too much until they actually do need to. The burning issues are slightly different and I wonder if you might not get better attendance if it was on a subject more pertinent to the newly diagnosed.

Having said that I'm sure age plays a role too, and so does the fact that you need time to adjust to the diagnosis - launching straight into talks about adherence is probably too much, too early for a lot of people.

Offline thunter34

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Re: Adherence and the curious crowd
« Reply #14 on: August 15, 2007, 04:30:42 PM »
And redhot posed a great question about the presentation.  I've seen this attitude all over the place.  If it failed, YOU failed somehow.

To be fair, though:  My particular medical team put this to me straight.  The gave me the realistic expectation that my regimen would eventually fail, but that it was in my power to possibly prolong the run with each regimen- and not to feel like a failure if/when that came to pass.  Also points to them for waiting til I was through with the initial sickness before getting into that at length.  They gave me the information I needed in appropriately measured amounts.
AIDS isn't for sissies.

Offline jack

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Re: Adherence and the curious crowd
« Reply #15 on: August 15, 2007, 04:33:18 PM »
I guess I dont understand. Dont these people have DRs who tell them how important adherence is? Seems like common sense to me.
I also have been accused of not adhering often over the past 18 years. Motherfucker,that pissed me off. The fucking meds were killing me and I was taking them religiously. Finally,when I became undetectable for the first time about 6 months ago the Ass.Dr. said "well at least we know you are taking your drugs now". I asked him what he meant by that and if he thought I hadnt been taking my drugs he was a fucking moron. I asked him how does he think I got the hump,fat, and deformed face"  He apologized.
 Motherfucker,I am still pissed today.

Offline Iggy

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Re: Adherence and the curious crowd
« Reply #16 on: August 15, 2007, 04:42:46 PM »
To be fair to the young ones, it was a good year or so into diagnosis til I was ready for an adherence seminar or the like.  And at 36, no spring chicken here.  

Agreed.

There is also something positive (pun not intended) to be said for being young, dumb and full of cum.  I don't begrudge youth and a feeling of immortality (even when they have a fatal virus that is killing them) 

There is a need for optimism and hope to drive our vision of seeking new answers.  It does take a sort of blind ambition sometimes to get past the "what ifs?" that might stop others who know better (or at least presume they do.)   

Unfortunately too many of the newly infected see too much about the virus (such as adherence) as yesterday's news as after all - that's just a problem for those LTS who have to take a lot of pills vs. just one Atripla.


There is a RIFT between the newly infected and the long time folk which I don't get.  Part of it is the know it all attitude expressed by some, part of it is the bitter and jaded crowd.

Newly diagnosed people are afraid and I'm NOT surprised they don't want to be inundated with horror stories and hearing about the 100 funerals someone went to 25 years ago.

I hope you realize that the know it alls and the bitter and jaded crowd comes in all ages as well as in both the newly diagnosed and LTS.

While I appreciate the newly infected not liking being told what once was as some sort of guideline for their lives - I sincerely appreciate that the LTS frustration from many newbies dictating what can never be which is usually based off of ignorance versus experience, research or even fact.



« Last Edit: August 15, 2007, 05:11:17 PM by Iggy »

Offline StrongGuy

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Re: Adherence and the curious crowd
« Reply #17 on: August 15, 2007, 04:52:24 PM »
I would just say that motivating people is not an easy task. My belief is that unless a person is convinced that they will get some sort or intrinsic value from attending, no amount of money or food will bring them into the fold. It's not easy to get people to see that a program on transmission has a lot of value no matter how you are dealing with HIV or what your unique situation is. Sometimes it takes a few tries and different messages to bring people into the fold and believe they will walk away better for it.

I'd have to also agree with much of what woodshere, Wesley and keyite said.

I went to one meeting early on in my diagnosis and it was termed a "support" group but it was just a meat market. Not to say it wasn't fun and I'm above that in any way (hey, you gotta live), but I saw the motivation and value was derived from the opportunity to hook, not the discussions.

Mark keep trying and you should be applauded for your effort. Sometimes different groups need to be motivated differently and it's no easy task. I doubt there's one easy answer because everyone has different needs and viewpoints and are in different places - but if you keep trying your bound to get through to some of them.

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

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

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

Offline BT65

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Re: Adherence and the curious crowd
« Reply #18 on: August 15, 2007, 05:49:38 PM »
In my area, the younger poz crowd only goes to events where alcohol is served.  Otherwise it's just us old timers.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline AustinWesley

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Re: Adherence and the curious crowd
« Reply #19 on: August 15, 2007, 05:59:04 PM »
Agreed.

There is also something positive (pun not intended) to be said for being young, dumb and full of cum.  I don't begrudge youth and a feeling of immortality (even when they have a fatal virus that is killing them) 

There is a need for optimism and hope to drive our vision of seeking new answers.  It does take a sort of blind ambition sometimes to get past the "what ifs?" that might stop others who know better (or at least presume they do.)   

Unfortunately too many of the newly infected see too much about the virus (such as adherence) as yesterday's news as after all - that's just a problem for those LTS who have to take a lot of pills vs. just one Atripla.

I hope you realize that the know it alls and the bitter and jaded crowd comes in all ages as well as in both the newly diagnosed and LTS.

While I appreciate the newly infected not liking being told what once was as some sort of guideline for their lives - I sincerely appreciate that the LTS frustration from many newbies dictating what can never be which is usually based off of ignorance versus experience, research or even fact.





Hey Iggy,

I do, that's why I wouldn't segregate people by age; however, I have run across a lot of ignorant people with a LOT of experience as well.

More of what I'm talking about has to do with the various fund raisers and events aimed at the Positive crowd.   The one situation I mentioned was all too common from what I've seen.   

And, I've certainly seen a number of young guys who think they know it all as well.

Anytime I am coordinating anything I try to be inclusive of everyone and Stronguy and Philly have valid points.   People do want to meet others they can relate to or hook up or whatever which is fine with me. 

My range of positive friends consists of people newly infected to some living with it well over 20 years.   How long someone has lived with a virus is irrelevant to me.  If they are a good person and I can relate or have fun with them it's all good.   

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline pozattitude

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Re: Adherence and the curious crowd
« Reply #20 on: August 15, 2007, 06:12:03 PM »
that is a very good observation.
Apart from few college kids doing volunteer work, the young are too busy with their social life.
An interesting observation of my own life is that I was very involved with local AIDS organization where I lived before I tested positive.  After my diagnosis I completely stopped doing anything that was AIDS related except for the monetary contributions . 
I think part of it was since I am positive, I didn't want to be around anything else that reminded me of my status.  Maybe this applies to some of the young ones out there too.
It took 10 long years for me to get back to my activism.

Rich
(who is quite a busy volunteer these days)
POSITIVE PEDALERS... We are a group of people living with HIV/AIDS, eliminating stigma through our positive public example.

Offline Lis

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Re: Adherence and the curious crowd
« Reply #21 on: August 15, 2007, 07:12:15 PM »
I'm not surprised... If you were diagnosed in the last couple of years, you'll live forever... (NOT)  this shit has been pasteurized to the point that it seems to be a common cold....

You can lead them to water... but you cant make them drink
poz 1986....

Offline jack

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Re: Adherence and the curious crowd
« Reply #22 on: August 15, 2007, 07:27:06 PM »
I guess I am missing something. You mean you are having meetings to motivate people to take drugs that will save their lives? Fuck. I understand people taking drug vacations but I dont understand why anyone would not adhere to the drugs when they are on them. Maybe its like that button on "lost".

Offline Life

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Re: Adherence and the curious crowd
« Reply #23 on: August 15, 2007, 08:27:45 PM »
Mark if you think about it,  look at the meeting and look at what changes Aidsmeds has gone through in relation to old timers and the newly infected in the past 12 months...   Alot of similarities....

Eric

Offline JamieD

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Re: Adherence and the curious crowd
« Reply #24 on: August 16, 2007, 01:12:22 AM »
I guess I am missing something. You mean you are having meetings to motivate people to take drugs that will save their lives? Fuck. I understand people taking drug vacations but I dont understand why anyone would not adhere to the drugs when they are on them. Maybe its like that button on "lost".

Oh, I dunno.... nausea, vomiting, diarrhoea, headache, brain fog, askathia, fatigue. Need I go on? I am fortunate to be on a combination that produces no noticeable side effects, but you better believe if I was vomiting every night that I would be lees then excited to be taking the pills. Sheesh. You must really have put no thought into that post.

Offline DCGUY2007

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Re: Adherence and the curious crowd
« Reply #25 on: August 16, 2007, 03:16:11 AM »
I am not young. Im 42 but I haven't attended a lot of events recently because many times is can be depressing to me. I think it may be the same for the young ones. Sometimes just taking meds everyday is enough reminder that one has Hiv.

I have been to some events and everyone was only talking about death and not working etc. It was kind of depressing. I know these things have to be addressed and running from them won't change things. but I miss when there were groups with diverse people attending... young, middle age old, people working, people not working etc. Not sure how to get that mix again

Offline gaspode

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Re: Adherence and the curious crowd
« Reply #26 on: August 16, 2007, 04:45:55 AM »
When I was diagnosed 21 years ago, I went to everything. I guess there was so little information to be had and limited ways to get it that it was importartant to grab every scrap. I ws also involved in every local HIV related group. These days I attend nothing and have no contact with any of the groups. This thread made me wonder why!
I guess there are a number of things:
There is so much information around (perhaps too much?) and it's so easy to access.
The local groups here always used to be "hijacked" by the more extreme activists who used them to promote their own agendas, and I got fed up with that.
Too busy with other things.
Less interested now, to the point that I can't tell you exactly what my last CD4 was, and years ago I could have rattled them all off since the beginning, with dates, from memeory.

Takes all sorts, but I am surprised that the recently diagnosed are not keen to get the benefit that can come from greater involvement.

Offline Ann

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Re: Adherence and the curious crowd
« Reply #27 on: August 16, 2007, 06:09:27 AM »
Oh, I dunno.... nausea, vomiting, diarrhoea, headache, brain fog, askathia, fatigue. Need I go on? I am fortunate to be on a combination that produces no noticeable side effects, but you better believe if I was vomiting every night that I would be lees then excited to be taking the pills. Sheesh. You must really have put no thought into that post.

Jamie,

Jack has been through every one of those side effects over the years and then some. What he's saying is the drugs save your life and he can't understand why some people don't take them with stricter adherance - like he does, despite the side effects.

The quality vs quantity of life is a question we all have to mull over and come to terms with for ourselves and our own situations.

Ann
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Offline jack

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Re: Adherence and the curious crowd
« Reply #28 on: August 16, 2007, 06:45:26 AM »
Jamie, I did take a drug break(three years)when I couldnt stand being sick anymore.  I thought the post was about people not adhering for other unknown reasons, depression, apathy, ignorance, whatever. 
When sides are getting you down you have to convince your Dr. that the sides are real and just not your imagination so you can change. I have done this several times and a way been lucky,because some of the drugs that produced really bad sides for me, I quickly became resistant too.
More than once I have considered the quality vs quantity issue Ann mentions, and quality usually wins out.  I found this MB after my three year drug vacation,when I was sick on reyataz. Prezista is a miracle for me. No sides for the first time in 18 years.

Offline gaspode

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Re: Adherence and the curious crowd
« Reply #29 on: August 16, 2007, 07:29:15 AM »
What he's saying is the drugs save your life and he can't understand why some people don't take them with stricter adherance - like he does, despite the side effects.



That demonstrates beautifully the complexity of the human psyche and it's reaction to chronic health problems. I personally cannot see the point in taking the meds if your not going to take them correctly, and I'm somewhat obsessive about taking them on time. But I guess some people can manage the "double think" of accepting the meds but then not taking them as they should.

I'm always amazed when people who do not have serious side effects say that the meds are "destroying" their lives because they have to remeber to take them once or twice a day. I've been through some regimes that were quite difficult in terms of side effects, eating restrictions etc, but always persevered, and am still alive to tell the tale, but I think it takes a great will to love to keep going through all that, and when you look at the self destructive behaviours that so many people indulge in, maybe some are lacking in sufficient will to live?

Online Dachshund

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Re: Adherence and the curious crowd
« Reply #30 on: August 16, 2007, 08:20:29 AM »
Oh, I dunno.... nausea, vomiting, diarrhoea, headache, brain fog, askathia, fatigue. Need I go on? I am fortunate to be on a combination that produces no noticeable side effects, but you better believe if I was vomiting every night that I would be lees then excited to be taking the pills. Sheesh. You must really have put no thought into that post.

The drugs we ingest are so toxic, so I hope you are one of the lucky ones that never experiences any negative side effects. Sometimes it takes more than a few months for them to manifest. If and when you do have to deal with some of the side effects you have listed above, Jake just might be the person able to offer you sound advice on how to deal with them.

Offline bocker3

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Re: Adherence and the curious crowd
« Reply #31 on: August 16, 2007, 09:10:22 AM »
Mark,

I think a plausible answer to your question is right here in this thread.  You can see the difference in thinking between the newly infected and those who have been living with it a long time.  (I'm about to speak in extremes -- I know it does not apply to everyone -- but it applies to enough) -- each side thinks the other is crazy for how they think and that only THEY know the "TRUE ANSWER".  Whenever someone talks about how their life is basically unchanged even with HIV meds, others jump in with their tales of woe of misery.  While I have no doubt that their tales are true and that their journeys with HIV have been very difficult, there is no need to invalidate someone elses.  Yes, their and my (because my life has not really changed and I tolerate meds just fine -- and I am neurotically adherent to my meds) story may change in the future, but when we say how our lives are -- people should respect it.  I have every reason to believe that I will a fairly normal lifespan and I have old timers (including those who are rolling their eyes and scoffing as they read this), in part, to thank for this -- I see that people do live with this -- even when their journey started in a time of little to no hope.  On the flip side, there are some newly infected who want to live with blinders on and will attack old timers when they tell of their realities.  That is just as wrong and should not happen.  What it comes down to is that everyone needs to stop thinking that there is only one "right".  What we have to remember is that we each are unique, our viruses are unique, our histories are unique, our outlooks are unique and ultimately, our demises will be unique.

OK -- off my soapbox.

Another possibility with the attendance could simply be marketing or even the time the event was held.  There certainly needs to be different strategies to get different age groups to come.  I may be fairly new with HIV (2 yrs), but at 43,  and a grandfather of 3, I'm not really looking for parties and hookups anymore.  Would I have attended??  I don't know, it would have depended on what else was going on in my life at that time.

This is a great discussion -- thanks for bringing it up.

hugs,
Mike
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Offline aztecan

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Re: Adherence and the curious crowd
« Reply #32 on: August 16, 2007, 09:47:49 AM »
Hey all,

Thanks for the great comments and discussion. I realize adherence isn't the hot topic for everyone, but I had hoped a few of the younger crowd might show up.

That said, we will be offering another course specifically aimed at those who still are socially active.

It is called SHAG (Safe, Healthy And Gay). It is a three-day program that deals with such things as disclosure, dating, intimacy, stigma and the more social aspects of living with HIV.

At the moment, one of my co-workers is tailoring this for the hetero crowd. I have a lot of new heteros I deal with (and a lot of women - more, per capita, than any other area of the state).

The goal is to help people address some of the social and personal issues they are dealing with rather than the usual medical types of discussion.

To answer the question about the program, the speaker did a pretty good job discussing adherence and he had some nifty graphics showing how the different types of regimens work and why they are timed the way they are.

He also did a pretty good job of not blaming the person taking the meds while, at the same time, trying to emphasize why adherence is important.

I rather liked his analogy of living with HIV as a train. The speed of the train was the viral load and the train track the CD4.

The goal, he said, is to slow the train as much as possible and to keep the track length as long as possible.

But he also discussed how the train will continue to move, regardless of adherence, and that at some point, the track ends.

So, all in all, it was a good program. I may use that analogy myself in the future. It is a lot easier to try to explain than some of the other models I have seen.

HUGS,

Mark
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~ William Ellery Channing (Unitarian Minister)

Offline Atripla_User

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Re: Adherence and the curious crowd
« Reply #33 on: August 16, 2007, 10:01:32 AM »
In my area, the younger poz crowd only goes to events where alcohol is served.  Otherwise it's just us old timers.

well alcohol does help break the ice

Offline thunter34

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Re: Adherence and the curious crowd
« Reply #34 on: August 16, 2007, 10:06:27 AM »
Quote
That said, we will be offering another course specifically aimed at those who still are socially active.

It is called SHAG (Safe, Healthy And Gay). It is a three-day program that deals with such things as disclosure, dating, intimacy, stigma and the more social aspects of living with HIV.

At the moment, one of my co-workers is tailoring this for the hetero crowd. I have a lot of new heteros I deal with (and a lot of women - more, per capita, than any other area of the state).

You did lose me there, Mother Mark.


"Safe, Healthy & Gay" is targeted to the hetero crowd?  Did I misread that?  Or you mean the co-worker is taking that model and revamping it?  I haven't had my coffe yet, so...


I think this has been a fabu little thread for this site. 
« Last Edit: August 16, 2007, 10:08:14 AM by thunter34 »
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Offline GSOgymrat

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Re: Adherence and the curious crowd
« Reply #35 on: August 16, 2007, 10:09:42 AM »
My doctor told me the train track analogy, which I thought was a good one.

Offline thunter34

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Re: Adherence and the curious crowd
« Reply #36 on: August 16, 2007, 10:17:49 AM »
My doctor told me the train track analogy, which I thought was a good one.

Mine did to.  Actually, we kinda worked it out like that together.  He laid out the one about VL and CD4's like you did.  My tweak on that was about resistance...probably having to switch trains here and there to make it all the way across town.

AIDS isn't for sissies.

Offline aztecan

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Re: Adherence and the curious crowd
« Reply #37 on: August 16, 2007, 10:30:14 AM »
You did lose me there, Mother Mark.


"Safe, Healthy & Gay" is targeted to the hetero crowd?  Did I misread that?  Or you mean the co-worker is taking that model and revamping it?  I haven't had my coffe yet, so...


I think this has been a fabu little thread for this site. 

The latter. A coworker is revamping the program for the hetero crowd. Sorry if I wasn't clear.

Although, who knows, some of those guys might just need some "unstraightening."  ;D

HUGS,

Mark

« Last Edit: August 16, 2007, 10:35:24 AM by aztecan »
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Offline thunter34

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Re: Adherence and the curious crowd
« Reply #38 on: August 16, 2007, 10:31:52 AM »
it's more likely me that wasn't clear.  one cup of coffee down and it reads much easier to me now.
AIDS isn't for sissies.

Offline Funkengruven

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Re: Adherence and the curious crowd
« Reply #39 on: August 16, 2007, 10:56:57 AM »
This has been a very interesting thread to read.  To make a little bit of a sweeping generalization, younger people tend to be more technologically savvy.  Another reason for their lack of participation at the adherence forum could be attributed to new media.  We are able to access information 24/7 from desktops, laptops, cell phones, blackberrys, ipods, etc.  There are Web sites like aidsmeds.com, chat rooms and a bevy of medical resources all floating around in cyberspace.  Maybe younger people feel that they can get all the information they need from the comfort of home, and physically attending a presentation isn't necessary (If it's a taped event, chances are you can watch it on Youtube).  Just a thought.

Online Dachshund

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Re: Adherence and the curious crowd
« Reply #40 on: August 16, 2007, 11:22:31 AM »
This has been a very interesting thread to read.  To make a little bit of a sweeping generalization, younger people tend to be more technologically savvy.  Another reason for their lack of participation at the adherence forum could be attributed to new media.  We are able to access information 24/7 from desktops, laptops, cell phones, blackberrys, ipods, etc.  There are Web sites like aidsmeds.com, chat rooms and a bevy of medical resources all floating around in cyberspace.  Maybe younger people feel that they can get all the information they need from the comfort of home, and physically attending a presentation isn't necessary (If it's a taped event, chances are you can watch it on Youtube).  Just a thought.

Their advanced technological knowledge didn't seem to prevent them from becoming positive in the first place. If you want evidence of the lack of knowledge of the technologically savvy spend a day in Am I infected or in any of the forums for that matter.

Offline thunter34

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Re: Adherence and the curious crowd
« Reply #41 on: August 16, 2007, 11:23:56 AM »
Their advanced technological knowledge didn't seem to prevent them from becoming positive in the first place. If you want evidence of the lack of knowledge of the technologically savvy spend a day in Am I infected or in any of the forums for that matter.


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Offline redhotmuslbear

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Re: Adherence and the curious crowd
« Reply #42 on: August 16, 2007, 11:36:25 AM »
This has been a very interesting thread to read.  To make a little bit of a sweeping generalization, younger people tend to be more technologically savvy.  Another reason for their lack of participation at the adherence forum could be attributed to new media.  We are able to access information 24/7 from desktops, laptops, cell phones, blackberrys, ipods, etc.  There are Web sites like aidsmeds.com, chat rooms and a bevy of medical resources all floating around in cyberspace.  Maybe younger people feel that they can get all the information they need from the comfort of home, and physically attending a presentation isn't necessary (If it's a taped event, chances are you can watch it on Youtube).  Just a thought.


What a crock of hooey, though I experience in many places this "everything I need to know is on the internet" attitude every day.  Those of us who lived through the Dark Years of HIV are gifted with decades of experience of HIVers that isn't necessarily boiled down to a neat HTML page or Flash presentation -- wiping dirty asses, mopping up puke, spoon-feeding formerly vibrant strong men, and getting arrested at government buildings and drug promo events is seared into our hearts and minds.  Besides, just because it's published on the net doesn't mean it's so.  Take drug company web pages, just like those meetings, which are designed to obscure the down sides of medications and play with their "convenience" and "efficacy."  Kids who rely on that tripe and other semi-truth on the net are missing out on the ability to critically analyze what is being fed to them by the new media and, subsequently, get led into disillusionment about treatments offered when they seroconvert from the ignorant notion that this is a "chronic manageable disease."
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Offline Funkengruven

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Re: Adherence and the curious crowd
« Reply #43 on: August 16, 2007, 11:44:33 AM »
Just to be clear, I wasn't trying to negate the value of  getting medical information firsthand from reputable source or others' experiences.  I was just posing a hypothesis as to why younger people might not have come to the adherence forum Aztecan mentioned at the beginning of the thread.

Offline bocker3

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Re: Adherence and the curious crowd
« Reply #44 on: August 16, 2007, 03:23:50 PM »
What a crock of hooey, though I experience in many places this "everything I need to know is on the internet" attitude every day.  Those of us who lived through the Dark Years of HIV are gifted with decades of experience of HIVers that isn't necessarily boiled down to a neat HTML page or Flash presentation -- wiping dirty asses, mopping up puke, spoon-feeding formerly vibrant strong men, and getting arrested at government buildings and drug promo events is seared into our hearts and minds.  Besides, just because it's published on the net doesn't mean it's so.  Take drug company web pages, just like those meetings, which are designed to obscure the down sides of medications and play with their "convenience" and "efficacy."  Kids who rely on that tripe and other semi-truth on the net are missing out on the ability to critically analyze what is being fed to them by the new media and, subsequently, get led into disillusionment about treatments offered when they seroconvert from the ignorant notion that this is a "chronic manageable disease."

Muslbear,
You make excellent points - but by belittling what others might be thinking or feeling you are not going to win them over.  Using terms like "hooey" and "ignorant notion" just inflame the divide between the newly infected and the long-term survivors.
While I personally think we do need to learn from other's experience, I also know that you can't cram years of personal experience down someone's throat (this goes for anything -- I try to help my daughter not make mistakes that I did, but it doesn't always work).  What you all went through in the 80's and 90's is NOT what most of us newer ones will experience -- that is the blessing of progress.  While you may think chronic manageable disease is a bad term, given your history, others don't -- and some need it in order to go on.  I know that some take the term to mean that HIV is not a big deal -- I do not!  I know that HIV is very big deal -- but I also look at it as being chronic and manageable (all the LTS have managed to live with it all these years).
I real feel that we all need to stop belittling others feelings on how THEY are living with HIV and start to learn from each other.  Yes, even a LTS can learn from a newbie if they stay open.
I just hate this us vs. them.  It makes no sense to me at all

Mike
Atripla - Started 12/05
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Offline thunter34

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Re: Adherence and the curious crowd
« Reply #45 on: August 16, 2007, 03:36:59 PM »
this is rapidly devolving into another "newbies v. oldbies / HIV Lite" thread.


*sigh*
AIDS isn't for sissies.

Offline bocker3

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Re: Adherence and the curious crowd
« Reply #46 on: August 16, 2007, 03:49:06 PM »
this is rapidly devolving into another "newbies v. oldbies / HIV Lite" thread.
*sigh*

I am afraid you are correct!

Mark -- my apologies for my part in this hijack!

Mike
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Offline Iggy

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Re: Adherence and the curious crowd
« Reply #47 on: August 16, 2007, 04:00:24 PM »

It is called SHAG (Safe, Healthy And Gay). It is a three-day program that deals with such things as disclosure, dating, intimacy, stigma and the more social aspects of living with HIV.

Mark - This may sound incredulous of me to suggest - but I'm gonna anyway - Does the word "safe" have to be in the title of the program?

I'm not promoting bareback sex here, but on a marketing (and consumer) level - such a title makes me feel like the program is going to be focused on a safe sex lecture...and if you are having trouble getting the newly poz to understand the importantce and relevance  of regimine adherence to their lives - I'm thinking they won't even go near a program which title seems to indicate it is about safe sex.



Offline thunter34

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Re: Adherence and the curious crowd
« Reply #48 on: August 16, 2007, 04:14:10 PM »
Iggy is onto something here, Mark.  (Score, Iggy.)


One of the problems associated with attracting people to these things (at least to me) is a feel of sterility.


How about something like:  Remaining Positively Fierce.

?

Just a name off the top of my noggin.  You may think it sucks, but the point remains.  While SHAGging is certainly something I can get behind (and have), the ''safe'' thing comes off more as sterile and just NOT DEAD rather than vital and full of life.  That's how it always gets interpreted on a gut level to me...."hmmm.  Time for more rubber gloves."
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Offline aztecan

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Re: Adherence and the curious crowd
« Reply #49 on: August 16, 2007, 07:24:28 PM »
Unfortunately, its not mine to name. It is the staff from our main office.

They thought the double entendre was cute, but I agree, when you throw safe into the title, it makes is sound like its going to be one of the clinical safer sex lectures.

For the record, the program is quite good.

I also plan on bringing someone up from Albuquerque specifically to discuss disclosure. This has been a big problem for some here and I would like to do what I can to make things a little easier.

But, I will pass along the suggestion about the name. Thanks again.

HUGS,

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

 


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