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Author Topic: Are You A Fool ??  (Read 7923 times)

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Offline Moffie65

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Are You A Fool ??
« on: October 07, 2008, 11:22:07 AM »
Are You a Fool?

We in America seem to be able to answer this question at every turn.  We go to Walmart with the expectation of saving money, yet if we didn’t go to the store, we’d save even more.  You say, “Well, I “need” so and so and Walmart has the lowest prices”.  Do they, or is it just their many years of brainwashing that have led us to believe that their stock of inventory is actually cheaper than say Target?   Do you know that there are many variances in quality and that an item from China could definitely be of lower quality than the same product in another store that buys from a different manufacturer in China than the competition?  Companies like Kodak and many others make lower quality products for the Walmart stream than the rest of their customers.

We have a whole segment of society fully invested in NASCAR, which for those of you who don’t know what that means the National Association for Stock Car Auto Racing, yet they haven’t raced real stock cars that you and I can buy from our local dealer since the early ‘80’s.  No, they hand build everything that is now raced to fit exactly into the association measurement parameters.  Besides is it really racing to go in a circle for 500 miles?  Personally I don’t think so. 

We drive for miles to save a few pennies on that next fill up, never thinking about the $3:00 of gas we use to save on average $2:00 a tank full on that purchase of gas.  Then when we get there, the price is say $3:69.9.  What is that all about?  Are we the fools for thinking that $3:69.9 is “actually” cheaper than $3:70?  ARRRRRGH.

We have gotten into a tradition of calling the region between Ohio and Iowa the “Mid-west”, which was a term created when the country ended at the Mississippi river.  Even today the weatherman/woman on every TV channel points to Chicago and says “the weather today in the heart of the mid-west will be windy and chilly”.  I call bullshit; the mid-west has and always will be Utah.  Those from overseas can only shake their heads in sympathy for that dear country across the pond that still fool themselves by never being able to change from the past.

How does this post qualify to be in the Living with HIV forum?  You know I will tell you...  

I have noticed with the most recent therapies out there, that many of the recently infected have come to believe that this disease by definition is no longer a terminal illness.  Well, tell that to someone who becomes infected with my virus, which has proven to be one of the most difficult to treat.  Tell that to many on this board who are struggling to find a treatment that will keep their virus under control.  Tell it to those newly infected who check in here with an immune system that is damaged so desperately, that treatment is truly a struggle to find. 

We read these threads with our own mirrors in front of us, never once considering that the problems that us old farts have, might be a guide just for you as your virus learns to adapt to your body and mutate on into the future years.  You go to your HIV specialist, who tells you that there is no doubt that you will live into your 70’s or 80’s, so don’t worry.  Are you foolish enough to believe a Doctor that is being paid by the drug companies to say those things?  I am not saying that all doctors are lying, and I am certainly not saying that you will not survive that long.  I am only saying that none of us should be foolish about this disease, especially since we are all still guinea pigs with our therapies and long life is no guarantee under any circumstances. 

The science hasn’t changed, but I assure you, as sure as the sun rises in the morning, that as I type this post, HIV is mutating and adapting to the medicine that you are currently on.  That is the science, not the view of an old fart.  We now know that this virus has been around now since about 1908, and over the years it has mutated into a virulent virus that is still growing and killing all over the planet.

To forget that simple fact makes you a fool.

I say, don’t be a fool, never shut down your learning curve, always remember that good healthy living is just as important as taking your meds with an anal retentive dedication.  Controlling depression and stress is far more important to your wellbeing than the latest drug therapy, but all these things take thought and dedication to keep in your mind, even more than before you were infected.  Keeping expectations under control will help you keep a level head and push back that tendency to fall into depression.  Don’t be a fool, be smart and alert, because only then will you be able to face this virus head on and keep your bodies healthy and happy.

Thanks for reading.
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 srmn98

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Re: Are You A Fool ??
« Reply #1 on: October 07, 2008, 12:27:38 PM »
Calling somebody who remains optimistic about their diagnosis a fool, to me, is a sad way of looking at things. We are all fragile whether we have HIV or not -- there are a million other things that could take any one of us down at any time.

Science always changes, that's the whole point of science. To say the science has not changed is not accurate, it changes on a daily basis.

For example: I'm pregnant. As little as 10 years ago, they did not know how to treat HIV positive pregnant women. Now, the risk of transmission to the baby is less than 1 % with proper treatment. The science has changed.

To me it is not so black and white but many shades of grey -- some of us will do well, some of us will not. That is true among HIV negative people also.

Optimism does not make us fools. It makes us human, and many of us need optimism to continue with life.

Sara

« Last Edit: October 07, 2008, 12:29:38 PM by srmn98 »

Offline Moffie65

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Re: Are You A Fool ??
« Reply #2 on: October 07, 2008, 01:25:49 PM »
Sara,

Thanks for responding.  In my post I never suggested that optimism is not to be both admired and embraced, and I surely hope that is not the message that came out of this post.  I have thought long and hard about how to place this subject here for discussion, never once being able to assume the response individually.  My only hope is for people who are HIV+ to NOT create false expectations about this bug. 

So far, the science of this viral protein has NOT changed one iota, and it is only our discoveries about how to deal with it that have changed.  Who in my experience would have predicted that Issentris would be the medication that finally blocked the virus from entering our CD4s?  Not me for sure, but I have had incredibly wonderful success with this drug and have achieved a firm nondetectible vl.

No, I wouldn't expect you to drop your optimism just because we older farts live with incredibly damaged immune response.  No that is not the message.  My message is to remain thoughtful and intelligent about what this viral protein is, and what it actually does to our bodies.   

I have a question for you Sara.  What shall I do about the brittleness of my bones after 25 years of hosting this virus.  What should I expect to do about the incredible brain fog that plagues me daily.  You could say that it is tied to my aging, but then others here who are far younger than I are having the same difficulties, and the same issues.  What about the rotting teeth that HIV causes?  What about the very many people who are HIV+ and have been for years, but they are dying of some of the strangest and insidious cancers; yet the clinicians still say that there is no connection to HIV?

Oh there are so many things which insidiously eat away at our physical structures and yet science is not dealing with them because there is no real profit incentive to dealing with these incidentals that can cause so many other things.

Please don't assume that optimism is not part and parcel of a healthy outlook, and I strongly advocate for being positive and uplifting in our everyday outlook.  I only caution that when dealing with this bug, we remain realistic and not create unrealistic expectations about the future or our inevitable therapies.

Please remain optimistic, and I trust your pregnancy will be healthy and uneventful, and I really hope you see your child grow to be a wonderful and healthy adult and your grandchildren love you dearly.  :)


edited for some really stupid grammar mistakes
« Last Edit: October 07, 2008, 01:31:36 PM by Moffie65 »
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

Online Miss Philicia

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Re: Are You A Fool ??
« Reply #3 on: October 07, 2008, 01:54:36 PM »
What about the rotting teeth that HIV causes? 

Answer:  Go to the dentist 7 times over the span of 3 months and have the entire bottom line of 80% of your teeth drilled and then filled in with porcelain fillings because they've rotted over the last 5 years?  With all of the reports about bone issues for those of us on tenofovir, and knowing that I've been on this med ever since it was approved 7 years ago, I wonder if I'm the tip of a bad iceberg or just an overly sad case.  We're all still in very uncharted territory when it comes to long term fallout from these medications.

On the plus side my dentist is very good looking, and after my next visit in 2 weeks all of the work will be done.  And, fortunately, Ryan White funding has paid for all of this as I went to the dental school at a local university (Ivy League even), but not everyone has such resources.

But I'm still on Truvada and now ponder if it would be smart to switch to something else, but I've already cycled through most of the meds.  Decisions, decisions.
"I’ve slept with enough men to know that I’m not gay"

Offline newt

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Re: Are You A Fool ??
« Reply #4 on: October 07, 2008, 02:12:10 PM »
Quote
assure you, as sure as the sun rises in the morning, that as I type this post, HIV is mutating and adapting to the medicine that you are currently on.

..or not perhaps.

If your viral load is kept consistently under 50 copies it seems not to mutate, replicate or do much at all, not even in deep parts of the body.

This is important. HIV meds, take them on time, keep your viral load under 50 copies, send the virus to sleep.

I will post some science links if people like.

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

Offline StrongGuy

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Re: Are You A Fool ??
« Reply #5 on: October 07, 2008, 04:09:24 PM »
I don't agree with some of the "scientific" claims regarding mutations in this post either, but respect everyone's opinions.

Peace :)
"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 Moffie65

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Re: Are You A Fool ??
« Reply #6 on: October 07, 2008, 04:29:35 PM »
Philly, I can certainly relate! My fabulous set of teeth, with the appropriate number of fillings and crowns, are finally becoming brittle and breaking for no reason at all.  I visit my dentist every six months and keep them as clean as possible.  I also quit taking calcium because my doctor said it was inhibiting my PI from working effeciently.  I am also at the end of my treatment options, but fortunately this one is the best one I've been on for over 15 years.

Newt.  Thanks for this input, and I will never say emphatically that the virus is mutating.  However from my experience and the experience of some of my peers in Arizona, there seems to be some resistance building to some of the fantastic drugs, which to me "implies" that the virus is somehow building resistance.  Now I am really curious how that can happen if the virus is not mutating.  This puzzle is one that I have always wondered about, because if what you say is correct, (and I would never challenge you on science at all) then how does one who is adherent, healthy and anal about preventative means; then go on to drug failure and sometimes death?  That is one I don't understand at all.

Thanks Mike, good to see you're still here and we shall agree to disagree.  My experiences are mine after all, and that is the only thing I relate to here, and also some of the latest science.  I also don't doubt that you are so very correct and that some of the recent science might be a bit skewed, so it's really important to stay alert and informed about this disease. 

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

Online Miss Philicia

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Re: Are You A Fool ??
« Reply #7 on: October 07, 2008, 04:42:56 PM »
I also quit taking calcium because my doctor said it was inhibiting my PI from working effeciently.  I am also at the end of my treatment options, but fortunately this one is the best one I've been on for over 15 years.

Really?  Which PI?  I've been taking calcium (1200mg/day) for over a year with no ill effect on my lab numbers.
"I’ve slept with enough men to know that I’m not gay"

Offline Cliff

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Re: Are You A Fool ??
« Reply #8 on: October 07, 2008, 05:00:37 PM »
I always thought resistance wasn't inevitable.  If you were on potent medications (with no underlying resistance issues) and you maintained optimal adherence, then resistance was unlikely to be an issue.
 
I can't remember what I was told about longevity but don't recall having the impression that I was going to live a full life.  A much longer life than people living with the disease pre-PI's, but not necessarily 70's/80's.  And I'm not sure I care either.  Enjoy the here and now.

Welcome back. 

Cliff


Offline dixieman

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Re: Are You A Fool ??
« Reply #9 on: October 07, 2008, 05:03:42 PM »
I take calcium... this is new to me that it may interfere with my drugs... good question philly what type of PI are you taking?

Offline Moffie65

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Re: Are You A Fool ??
« Reply #10 on: October 07, 2008, 05:14:27 PM »
Philly, it was Kaletra I think.  Anyway, there was a distinct correlation to when I started the same dosage you are on.  Funny thing about this disease, it may not be the case for everyone, that is the reason that we must all be dilligent with our therapy; which as you well understand was the original reason for this thread.

Cliff, Under no circumstances is resistance inevitable, however, from the experiences we have seen right here on AM, many have had drug failure and they were both adherant, and healthy before resistance set in.  Personally I wouln't have believed it either unless I had not experienced numerous drug failures myself.  Are we going to belive doctors and scientists, almost universally not infected with the virus, motivated my the everlasting dollar, or learn from our peers, who seem to be proveing the erraticness of this virus.  I don't suppose you were told you would live to 80, but I have seen post after post here where people have that expectation.  Fortunately we are only given one second at a time, and the decisions we make on any given day can really impact us both positively or negatively, depending on our outcomes.  Here again I am only informing people that nothing is etched in stone with this disease and we must remain vigilant to keep our health the best it can be.  

In other words, be a participant in our own well being.

Good to be back Cliff.
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

Online Miss Philicia

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Re: Are You A Fool ??
« Reply #11 on: October 07, 2008, 05:48:30 PM »
Personally I wouln't have believed it either unless I had not experienced numerous drug failures myself.

With all due respect, and as a fellow traveller diagnosed and on meds as long as you, I avoid extrapolating from my own treatment failures (though I do about a lot of other things).  Any LTSer who began HIV treatment pre-HAART generally developed multiple mutations due to being on either mono or dual therapy for years.  Also, at least in my own case, I'm quite sure after any NRTI and NNRTI mutations during that period I also developed my PI mutations from the horrible first formulation of saquinivir that was subsequently withdrawn.  I've also had wildly worse diarrhea and absorption issues than most HIV patients, because my VL was not suppressed for 13 years, so that didn't help with PI mutations either.

However, I do agree that it's careless to make blanket statements like HIV definitely will (or will not) mutate, but that's mostly because I shy away from such things -- certainly only 12 years after HAART.  Obviously NOBODY has been on one treatment regimen from the age of 16 until death with a VL continually suppressed that would concretely exhibit that resistance didn't ever develop.  However, I don't have a big issue making statements with a fair amount of substantive caveats.
« Last Edit: October 07, 2008, 05:51:31 PM by philly267 »
"I’ve slept with enough men to know that I’m not gay"

Offline skeebo1969

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Re: Are You A Fool ??
« Reply #12 on: October 07, 2008, 06:34:21 PM »


   After what I've been through in the last few months concerning my health I pretty much just keep the mindset that what happens happens.  I have no control over it...  I take care of myself, take my meds, and go to my doctors when I am supposed to.  Only one man in my family has made it over 50 and I plan on being the second...  11 years and counting.

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

Offline Buckmark

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Re: Are You A Fool ??
« Reply #13 on: October 07, 2008, 06:38:59 PM »
There's a balance between being hopeful and optimistic, versus being realistic, and I think that balance is probably different for everyone.  The span of people's experiences with HIV and AIDS covers a great many experiences and "personal truths".  There's no denying the experience of many LTSers who have resistance issues, side-effect issues, and other ailments and illnesses from taking medications for so long, or just having HIV so long.  The long-term effects really haven't been studied that well, if at all.  There's also no denying the experiences of many folks who are blessed with newer meds that are effective at controlling the virus over long periods with minimal side-effects.  No one should expect that will continue indefinitely -- but then there are very few things that anyone can expect indefinitely.  Expectations lead to disappointment.  There are more treatment options than we've ever had.  But is the status quo good enough?  Heck no.  Each of us needs to take personal responsibility for our health, and meds are just one part of that.

This post is bound to be controversial, right from the start with the subject line.  Perhaps that's the intent -- controversy often gets people's attention.  It will drawn some folks in.  Others will bristle at the intimation that we are fools, and that is a message I perceive in the original post.

I feel like we've had this same discussion here before, many moons ago.

Regards,

Henry


"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline LPinUK

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Re: Are You A Fool ??
« Reply #14 on: October 07, 2008, 06:43:28 PM »
What is the point of this post ?

To inform the (relatively) recently infected people like me that if Im not worrying then I should be?

This post has put me on a right downer.  Im off to bed.
Diagnosed Poz September 2003, Current Regimen Truvada & Sustiva.

Offline skeebo1969

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Re: Are You A Fool ??
« Reply #15 on: October 07, 2008, 07:04:28 PM »
What is the point of this post ?

To inform the (relatively) recently infected people like me that if Im not worrying then I should be?

This post has put me on a right downer.  Im off to bed.

    I understand your feelings, but I do not think that is the intention of this thread.  Anytime our mortality is spoken of it can be looked at as rather morbid, but it is a fact that chances are we are going to succumb to this disease.

    Speaking for myself... when I was first diagnosed I felt like I had a very limited time to spend with my loved ones.  I was wrong of course and found that out by educating myself, with the help of this site.  During this time, accepting being HIV + I also became naive to the reality of it all.  That foolish thinking had me thinking I had the flu because I was listening to my doctor who I trusted.  It was not until my chest became tight and my breathing became increasingly difficult  did I realize it might be pneumonia... it was a bigger shock after being admitted into the hospital and being told I had PCP.    During this whole time I'm listening to my idiot doctor who was giving me avalox for a chest cold as he put it.

    The message I get from this thread is the importance of being proactive....  I was complacent and for that I was a fool...
I despise the song Love is in the Air, you should too.

Offline Moffie65

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Re: Are You A Fool ??
« Reply #16 on: October 07, 2008, 07:35:34 PM »
I would be a fool myself if I ever thought that I could get everyone who is a member of this fourm to be adherant, take care of their health, and be attentive the true realities of this virus. 

My simple purpose was to get people to stop thinking that HIV is a static disease, and all you have to do is take your one pill and be healthy for the rest of your days.  This view is not unsual here, and I've been tracking posts for a year now that seem to me to be espousing this view. 

Yes, this isn't a new subject for me, but I seem to care that people really pay attention to what is happening to their bodies so they are not caught off guard and end up letting the virus destroy any sense of a quality life.  I guess you could call me a fool for giving a shit about those who are depressed by talking straight about the science and the reality of a terminal illness, but funny thing; that is who I am.  If my subject matter scares you or depresses you; you probably are the person I am looking to awaken to some bit of reality.  My message is often disturbing, but then so have been many activists.  I can remember many a time when Act-up would parade the streets with open coffins with skeletons in them, and I found that disturbing at the time, but you know what, it stuck with me and I will never forget those very thin men who were carrying these coffins, and so few are still left to help out. 

Call me a bleeding heart.  I stand by my concerns and hopefully some who read this thread will maybe pay attention a bit better and possibly live a far longer life because they learned to take care of themselves and pay attention to their health.

Simply speaking, I stand by my original premise; if you are ignorant about how this disease could POSSIBLY impact your life, and further don't really care what the history teaches through the reality of others' lives: you are the fool.
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

Online Miss Philicia

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Re: Are You A Fool ??
« Reply #17 on: October 07, 2008, 07:39:00 PM »
What is the point of this post ?

To inform the (relatively) recently infected people like me that if Im not worrying then I should be?

This post has put me on a right downer.  Im off to bed.

No offense, sweetheart -- but you've been diagnosed for 5 years, not 5 months.  At any rate, you can't expect (even if it was 5 months) to go clicking on an internet message board and not be dealt some uncomfy issues when discussing a life threatening disease.
"I’ve slept with enough men to know that I’m not gay"

Offline Tim Horn

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Re: Are You A Fool ??
« Reply #18 on: October 07, 2008, 08:56:20 PM »
Simply speaking, I stand by my original premise; if you are ignorant about how this disease could POSSIBLY impact your life, and further don't really care what the history teaches through the reality of others' lives: you are the fool.

Well, Tim, that didn't take you very long. Not here two days and we're already receiving moderator reports regarding your flamebaiting. Tim, what you've written above is patronizing and insulting, compounded by the fact that you're making authoritative statements about resistance that don't really stand up (long-term efficacy data involving modern-day regimens -- think Atripla and Kaletra-based combos -- has been remarkable) -- and them basically retracting them.

I don't know about you, but I'm not seeing a significant number of Pollyannas in the Forums. There are scores of individuals dealing with resistance, side effects and a multitude of HIV-related complications. They know exactly what you're writing about here... and I seriously doubt that these experiences are lost on those who haven't (yet) experienced any of these problems. And you know what? Many folks also need to know that it is possible -- but by no means guaranteed -- to experience long-term (if not life-long) benefits from treatment with few, or at least minimal, side effects. These are all the realities of HIV infection.. and everyone experiences them differently. Someone's optimism is based on no less of a reality than some else's pessimism.

Tim Horn

Offline Moffie65

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Re: Are You A Fool ??
« Reply #19 on: October 07, 2008, 11:53:20 PM »
I apologise to anyone whom I might have offended, and Tim I apologise to you also.

My observations of the incongruities in our culture which lead us to believe things which might be slightly askew from reality, led me to emphasize a point that was off point. 

I will not make this mistake again.

Thanks for your concern, Tim.
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: Are You A Fool ??
« Reply #20 on: October 08, 2008, 12:27:12 AM »
Tim, perhaps the LTS section is better for those of us with no teeth..  Please I know how your saying what is in this thread.. but those that dont know you may not

love lisbeth
poz 1986....

Offline Dragonette

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Re: Are You A Fool ??
« Reply #21 on: October 08, 2008, 02:52:27 AM »
Dear Tim,

In another thread, you asked me how I was . Im doing good actually. Getting married in a couple weeks and trying to get pregnant, Ive even been approved for fertility treatments. But yeah 2.5 years into treatment and even while religiously taking my meds, already resistant to one class (NNRTIs).
Those weeks when I was dealing with the resistance were very isolating. I felt that even people who are 10 years poz don't know how I was feeling. I felt that the info out there was BS, and I was angry with people on the boards who get away with careless negligence when it comes to their meds while I took them every day at the same time and my virus couldn't care less. Right now, I am on old school meds that I would like to change, and watch bones and veins appear in places I haven't seen them before, and some people will say "you have become so thin", when I actually haven't.

But I did spend a while with a few people diagnosed in the early 80's recently. They all had their longterm chronic problems, aka "side effects" (such a benign name for total disappearance of body fat, loss of balance, and damage to inner organs among other things, isn't it?). They all had resistences. Yet they were definately optimistic about the future of HIV treatment, esp. the emergence of genetic medicine. Because, they said, they have been there with the death sentence diagnosis, and they were absolutely awed at the speed of scientific reaction. Despite the enormous losses of friends and spouses that they suffered, and despite some of them nearly dying from IOs. What I mean to say, like yourself they have firsthand experience of the worst impacts of this disease.

Just the other day the French team who actually managed to identify the virus and relate it to AIDS awarded the Nobel. These people that I met were already infected when this discovery was made, gone thru AZT which was completely controversial and dangerous back then [I know I am not saying anything new, just describing what I heard from them], and now (within the limitations of their various resistances) switched to better meds. They all still work and have relationships and do stuff. I know though that the reason that I even got to meet them was because they are the ones doing OK. Or more than OK. I know they are not representative of anyone but themselves. But I hope their optimism is not the fluffy, sedated kind, but realistic. I hope so.

One more thing, like them, to me you're an example of someone who "made it". If you made it from the utter darkness of the 80's, even with brittle bones and bad teeth, then I too hopefully, thankfully, can make it.

Yours with cautious optimism, 

PS Just to make things clear, not offended by your post, think it very important. And when you describe those demonstrations with the near dying men, they, in effect, have saved my life.
« Last Edit: October 08, 2008, 03:05:59 AM by Dragonette »
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline joemutt

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Re: Are You A Fool ??
« Reply #22 on: October 08, 2008, 03:42:52 AM »
I didnt take that as flame baiting, more a timely reminder to be adherent
which after 11 years I start to fail a bit in. I'm of two minds on this;
I live pretty well, good numbers (CD4 1540), while at the same time
I try to adjust my habits to dim
side effects like too high cholesterol, beginning of osteoporosis,
a tiredness I can't always shake. Things for the newly diagnosed in general
might be much better and good for them, I say. Hugs to all in this, ye olde and the new  :-*

Offline AndyArrow

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Re: Are You A Fool ??
« Reply #23 on: October 08, 2008, 06:09:17 AM »
Moffie65-

I think too often in our culture we are led to believe things can be cured or controlled by just a few pills or a GOOD attitude.  Those "Cancer Treatment Centers of America" commericals always drive me crazy since I have known too many people who have died from Cancer.

With all the horrible side effects of some of the medicines I know I wouldn't be here today without them.  The medicines I'm taking now are a 100x better than what I was taking in the 90s.

I think your message might be better directed at those who think they might be infected or are still negative and have risky behavoir.

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline Assurbanipal

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Re: Are You A Fool ??
« Reply #24 on: October 08, 2008, 06:59:18 AM »
There's a delicate balance to be found somewhere between honoring history, reflecting disparate outcomes, and basing discussion on modern science.

Take for instance the characterization of HIV as a "terminal illness". 
 - It was historically true
 - For some it will be true today
 - But repeated scientific studies in the age of HAART show a decreasing minority of those dying with HIV die from an AIDS defining illnesses (in Western countries where HAART is available).  And more recent studies suggest that the risk of HIV as a terminal disease decreases by cohort over time.

Thus the characterization is not consistent with modern science.  Instead a better statement would be that HIV is historically and potentially a terminal illness.

Rereading the OP's statements, I think they are all to be taken as reminders of the potential risks that we face, as honoring the circumstances of people who are currently struggling with the disease and as encouraging the newly diagnosed to manage their risks and expectations.

But I don't think it is being a Pollyanna to suggest that most of those who are newly infected and take steps to actively manage their risks will have relatively good outcomes -- that's just reflecting the current state of the science
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 Ann

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Re: Are You A Fool ??
« Reply #25 on: October 08, 2008, 08:11:10 AM »
I think of hiv as being terminally chronic.

Or chronically terminal.

Works for me either way.
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 Gary85741

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Re: Are You A Fool ??
« Reply #26 on: October 08, 2008, 09:25:51 AM »

Some good points in the original post.  However I go to Wal*Mart's "neighborhood market" grocery stores because their food prices are usually less than any other grocery chain.  And I do "need" food  ;D  Oh I do get a share of criticism for shopping there but that's fine...at my age I'm capable of making my own decisions.

Gary
Poz since '89. 
Current regimen: Rescriptor, Emtriva, Kaletra, Invirase, Acyclovir, Lisinopril, Lipitor, Prilosec, Valium, Testim, Nandrolone, Loperamidr, Marinol.

Offline komnaes

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Re: Are You A Fool ??
« Reply #27 on: October 08, 2008, 10:26:20 AM »
I sort of see this as the classic "the glass is half-full or half-empty question".. as a relatively newbie myself with fast declining CD4 it's scary and stress-inducing to realize that side effects and drug resistance will become real problems soon. But never for a moment, before and after my diagnosis, I am completely at ease with the notion that this disease can be managed by popping a few pills a day. It just isn't.

I guess I will deal with it when I get there.. and not think too far ahead.
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline Moffie65

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Re: Are You A Fool ??
« Reply #28 on: October 08, 2008, 10:34:54 AM »
Lis, duly noted.  Let's hear it for the blue monkeys!

Dragonette, I am truly sorry to hear about how you are doing right now.  I will keep good thoughts that you can get on a treatment regimine that will really work for you.  What crap this disease is.

Jan, constant adjustment is part and parcel of this disease and I see you are facing that now.  I feel for you, and you can count on one thing and that is I totally relate.  Thanks.

Assurb, I must say, I really need to do some homework, as the very nature of this virus has somehow changed in the last year.  Thanks for the post.

Ann, how brilliant.  I will have to adapt somehow, and your definition is probably the best I've seen so far.  Fabulous.

Gary, I would shop at Wally world if we had one with food but that requires a 40 mile round trip to Benson, which adds so much to the shopping that it isn't worth the trip.  We are soon to get a Wally world market, and a Sams, so then things will be easier.

Komanes, I wouldn't worry too much, you are pretty capable, and seem to be very alert to your health.

Thanks you guys for the posts, and the reminder that I need to do some readjusting to this new Non-mutagenic viral protein.  I wish I could tell that to our southern neighbors in Mexico, to whom HAART is only a fantasy in their world.
« Last Edit: October 08, 2008, 10:38:47 AM by Moffie65 »
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 srmn98

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Re: Are You A Fool ??
« Reply #29 on: October 08, 2008, 10:36:19 AM »
Moffie,

Thank you for your good wishes for my pregnancy :)

You asked me above "what shall I do about the brittleness of my bones after hosting 25 years of this virus ...."

I'm in no way diminishing or denying the realties of HIV/AIDS in general or your case specifically. I feel much empathy for those who have walked before me. I have no answer for you -- only to continue on, one day at a time, as best you can.

There is a place for realism, this board, in fact, is a good place for realism. I do see the point of some of what you are saying -- but I think your message got mixed up in your original post. Or at least I took it that way. If your message is "to remain thoughtful and intelligent about what this viral protein is, and what it actually does to our bodies" -- yes of course, I agree. But to assume that resistance is inevitable ? Perhaps it is for some of us. Perhaps it isn't. As too often with HIV, the science is still unsure, we are forced to take it case by case and day by day.

My personal choice is to be thankful for each healthy day. It's all I can do. It does not mean that I deny the possibility of what could happen tomorrow, nor that I am a fool for hoping I will remain well.

Best regards,

Sara






Offline jennynyc7

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Re: Are You A Fool ??
« Reply #30 on: October 08, 2008, 10:56:11 AM »
I understand what Tim is trying to say. While I certainly understand the effects that the LTSers (and others as well) have endured, I must admit that being diagnosed only a month after infection and starting treatment immediately (personal decision not based on bad #'s) ...I can honestly say that maybe I am a bit too optimistic about my future and the disease. I was able to get my vl undetectable within one month and my immune system has completely recovered from the initial ARS. I know this may be a bit naive but I keep telling myself that the stories that I hear that are not so good are the individuals that either were diagnosed 20+ years ago or those that didn't find out they were infected until there was far too much damage to ever fully recover.  I know I am a rookie and I have no "right" to gauge this disease as of yet, but so far so good for me and I think that is due to several factors:  1) timely diagnosis (which is not always an option for some people), 2) my choice to start meds with higher cd4 #'s, therefore minimizing slow (or rapid) damage to my immune system, 3) possibly my good health pre-HIV .

My disadvantage being (and yes the Dr's have gone over this with me) is that since I started meds early on, I may experience the side effects many of you speak of (brittle bones, loss of teeth, organ issues and so on) sooner than later. My opinion? I rather feel good next year when my little girl starts kindergarten, or when I am trying to teach the other one how to roller skate, or when my kids start wanting to have slumber parties like I remember so well as a kid myself.  Will I be well or even around in 20+ years (hopefully they wait that long) when either of them get married? Who knows? But I am darn sure I will be around tomorrow and that is all that matters.

j
12/24/07-infected
1/3/08-ARS began
2/12/08-diagnosed
Initial Vl=99000
CD4=585
2/14/08-began Truvada/Reyataz/Norvir
3/01/08=Swapped Reyataz for Viramune
5/1/08:     vl= undetectable
                cd4=1250
10/24/08:  vl=undetectable
                cd4=1172 (55%)

12/4/08:    vl=254 (hopefully just a small blip)
                cd4=1234

Offline Moffie65

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Re: Are You A Fool ??
« Reply #31 on: October 08, 2008, 11:02:48 AM »
Sara, I ask you one question, and maybe it will draw others to answer also.

If the virus mutates, does it then mean that there will be no resistance?  In other words, can the virus mutate to another one that is non-resistant and still remain under control.  I am really confused about this, and I would love to have a clarification about mutagenic viral proteins.  The other thing is, how do we tell the difference so that the Doctors insuring non-resistance can be believed?

Jenny, you have not only the "right" but the responsibility to guage this disease.  Your record of diag., treatment and health are every bit as important as mine, and don't you ever think otherwise.  My rant is probably a bit severe, as has been brought out above, but I see so many who minimize their infection to the extent that they completely ignore it to their own detriment.  You are certainly not that careless and will more than likely have a very successful and healthy long life.  We certainly hope so.  Thanks for your thoughts.
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 Peter Staley

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Re: Are You A Fool ??
« Reply #32 on: October 08, 2008, 11:17:59 AM »
If the virus mutates, does it then mean that there will be no resistance?  In other words, can the virus mutate to another one that is non-resistant and still remain under control.  I am really confused about this, and I would love to have a clarification about mutagenic viral proteins.  The other thing is, how do we tell the difference so that the Doctors insuring non-resistance can be believed?

Moffie -- the virus doesn't mutate ON IT'S OWN.  It mutates through the replication process.  In other words, a single virus doesn't change itself -- it tries to make copies, and those copies might be slightly different.

If the virus is prevented from making copies of itself, it can't mutate.  Thus, therapy that prevents viral replication will also prevent the development of resistance.

Offline Moffie65

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Re: Are You A Fool ??
« Reply #33 on: October 08, 2008, 11:20:17 AM »
Peter, thank you for turning on the light.

That brings up another question.  How can some of us be on treatment for say three to four years on a regimine that is working fine, and then fairly suddenly we end up with treatment failure?  What happened then?  It seems like if what you say is true, there would never be an opportunity for the therapies we are on to fail.  I guess that is where my confusion lies. 
« Last Edit: October 08, 2008, 11:23:29 AM by Moffie65 »
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 atlq

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Re: Are You A Fool ??
« Reply #34 on: October 08, 2008, 11:39:41 AM »
Tim,

Keeping viral replication as low as possible is the key to preventing resistance. For example, if your VL is 3,000, it means that 3,000 copies of the virus were found per ml of blood. Each of these has the ability to replicate. Succeeding generations of a virus, begin to differ slightly in their makeup. Most of these mutations are meaningless as far as resistance to treatment is concerned. But a number of them are not. If you are on a combo that is potent enough to reduce that 3,000 VL to less than 50 (or 40 or 10), you exponentially reduce that amount of viral reproduction and the odds that resistance mutations can occur.

I suspect that a number of us who were on less than optimal suppression therapies in the 90's developed resistance issues before these facts were clear. But we now know that being adherent to a regimen that keeps your viral load undetectable will prevent resistance from developing in the vast majority of cases.


Any corrections to my scientific understanding are welcome!....
“Keep up the good work....   And God bless you.”
  --  Sarah Palin, to members of the Alaskan Independence Party, 2008

Offline Peter Staley

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Re: Are You A Fool ??
« Reply #35 on: October 08, 2008, 11:40:33 AM »
Could be any number of things, and you are right, some are impossible to predict.

The person's virus could be replicating slowly, just under the level of detection.

The person could have prior resistance which just took a long time to replicate and reveal itself.

The person could have started taking a new supplement during those 3 years that altered the bioavailability of one of his ARVs.  

The person might not be consistently compliant on taking their meds.

I'm sure I've missed some possibilities.

Bottom line, with the newer meds, we DO KNOW that this is happening much less often with those starting treatment for the first time (unlike you and me and all the old-timers).  In other words, the reality you and I live in is not the reality newbies face today (thank god).

Peter

Offline srmn98

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Re: Are You A Fool ??
« Reply #36 on: October 08, 2008, 11:59:22 AM »
Moffie -

I don't know the answers, but I found Peter's posts to be informative -- Thanks Peter !

Sara


Offline AlanBama

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Re: Are You A Fool ??
« Reply #37 on: October 08, 2008, 12:27:10 PM »
Hey Moff,

I'm gonna join Lis here and invite you over to the LTS forum.   It's more for those of us who are toothless, lipatrophied, lipodystriphied, brittle boned, big-bellied, skinny armed and legged, nauseated, with foggy minds and small bank accounts.

The 'new reality' of HIV seems to be for people diagnosed in the 00's that they may very well keep their virus under control and live out a normal life expectancy with few health problems.   I'm thankful for that, on all their behalf and I hope it proves to be true.  But that just isn't the reality for some of us old folks, and it is difficult for us to relate.   I'm not saying we aren't all dealing with the same virus, and that we all aren't "on the same team".   It's just that some are hitting home runs and sprinting around the bases, and some of us are crouched in the dugout, trying not to throw up.

Good to see you back, buddy.

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 David_CA

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Re: Are You A Fool ??
« Reply #38 on: October 08, 2008, 12:43:33 PM »
I'm curious about replication and mutation.  We all know that the virus is in various parts of the body but not in measurable amounts in the blood.  Are the mutations that occur in these non-blood locations (part of) the cause of resistance?

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 Assurbanipal

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Re: Are You A Fool ??
« Reply #39 on: October 08, 2008, 12:57:26 PM »
Could be any number of things, and you are right, some are impossible to predict.

The person's virus could be replicating slowly, just under the level of detection.

The person could have prior resistance which just took a long time to replicate and reveal itself.

The person could have started taking a new supplement during those 3 years that altered the bioavailability of one of his ARVs.  

The person might not be consistently compliant on taking their meds.

I'm sure I've missed some possibilities.

Superinfection (catching a resistant strain from barebacking with other POZ) has been suggested as a possibility (it certainly is in the forefront of my ID doc's mind each appointment  -- it's like the Inquisition! :))

Bottom line, with the newer meds, we DO KNOW that this is happening much less often with those starting treatment for the first time (unlike you and me and all the old-timers).  In other words, the reality you and I live in is not the reality newbies face today (thank god).

Don't know about god.  Me, I thank the courage and strength of you and all the old-timers and the curiosity and tenacity of the AIDS research community.

The 'new reality' of HIV seems to be for people diagnosed in the 00's that they may very well keep their virus under control and live out a normal life expectancy with few health problems.   I'm thankful for that, on all their behalf and I hope it proves to be true.  But that just isn't the reality for some of us old folks, and it is difficult for us to relate.   I'm not saying we aren't all dealing with the same virus, and that we all aren't "on the same team".   It's just that some are hitting home runs and sprinting around the bases, and some of us are crouched in the dugout, trying not to throw up.

I think there are two "realities" in the 00's.  There are those diagnosed with HIV and relatively high CD4 counts for whom the above description is probably pretty accurate.  I think we all are united here in hoping that they will never get to an AIDS diagnosis.

And then there are those who are neither fish nor fowl -- diagnosed late, already have AIDS and an AIDS defining OI at diagnosis.  Studies appear to suggest that between 10% and 30% of us (yup, I'm one of them) don't make it through that first year of diagnosis  and that longer term survival rates aren't as good as for those who catch it early.  But those of us who make it through the first year benefit from the medical knowledge of today.

All three groups share a common virus and many common issues, but medical needs and outcomes can be very different among the groups.



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 mecch

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Re: Are You A Fool ??
« Reply #40 on: October 08, 2008, 02:33:21 PM »
My simple purpose was to get people to stop thinking that HIV is a static disease, and all you have to do is take your one pill and be healthy for the rest of your days.  This view is not unsual here, and I've been tracking posts for a year now that seem to me to be espousing this view. 

Hmm, anyone who believes the "one pill takes care of everything and life goes on physically unchanged" theory of HIV is pretty naive. I guess there are some HIV neg people who believe that. We should come up with a ridiculous name for this new condition, and blame it on Atripla and pharma propaganda. 

I can't imagine any responsible doctor informing a newly positive person that one faces a static experience!  However, it does seem that science and medical doctors are, indeed, very optimistic when educating and treating newly HIV+ people.  If I had seroconverted in 1988 instead of this year, i would have been dead in a year, due to a genetic disposition to be hyper-fast progressor.  But my ID took that "fluke" in stride and didn't alter his optimistic prognosis.  Rather it seems IDs often assure that one won't die quickly, and certainly not of AIDS (as defined to date). Eventually you can be sure that all the "weird" cancers will redefine the HIV experience. Deaths will be HIV-related, afterall, for instance anal cancers or whatnot.  And so what do we call the disease.  Why not good ol' "AIDS".

The concerns and fears addressed in this thread seem, to me, to be related to what I was asking in my recent thread - what does it mean to be identified as a "Person living with AIDS" versus an "Hiv+ Person".  Those nomikers are rather often but not always linked (sometimes erroneously) to LTSers having AIDS, and new seroconverters hopeful to have this newly "constructed" disease - the "manageable chronic HIV not unlike diabetes".....

Everyone can learn from everyone elses experiences, no?

Also some of what you mention makes me really concerned -- why is Atripla (or truvada/sustiva) one of the gold standard first line treatments if it is, as some suggest in this thread, so linked to bone and tooth decay???  The best choice anyway, despite that? Pure pharma greed? Please. Or did long-term living with viral loads of LTSers actually contribute to this bone decay.

As a newbie, but someone with electronic access to all scholarly journals, and the capacity to read science, and also listening to my expert physicians, there is NO clear conclusion that successful HAART will inevitably fail due to resistance. 

Its nuanced to take science from a specific population and apply it to another.  What's going to happen a few years time, with existing HAART, in countries that treat without proper pre-treatment testing.  One can't withhold the treatment, although often its second-rate HAART and in the context, doomed to fail rather quickly in a good proportion of the treated. 

I think the key for science vis-a-vis HAART and resistance is that we are only now getting into a years of really high success rates in first line treatment for significant portions of those so treated.  So the studies on such populations will only come down the line. 

Unfortunately, the epidemic changes face, now delivering drug resistant viruses direct to newly infected people, and so on and so, myriad different complications of individual experiences of HIV.  SO we all must agree that living with HIV offers infinite shades of grey, so many individual experiences adding up to a generalisable science.

The reality of newbies is rather different than LTSers.  Thats just the way it is.  But remember you'll have to divide the newbies themselves into different camps, and so on and so on...  LTSers can NOT define the experience, the epidemic, the illness.  The dead of the HIV epidemic cannot.  Recent sero-convertors cannot.  Non-progressors cannot. and so on.

And can you imagine just how many more differences will or would be discovered when ever more of the millions of HIV+ people receive HAART, and when stigma lessons to the point where testing becomes more common and people receive HAART (or whatever we have by then) much closer to their infection date. 

Isn't that the fantastic hope expressed by experts in Mexico, for the first time in a decade. Functional cures for recent infections?

So let's not throw optimism out the window for the sake of very justified pleas to remember and learn from and respect all the history and experiences to date.
« Last Edit: October 08, 2008, 03:10:04 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline water duck

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Re: Are You A Fool ??
« Reply #41 on: October 08, 2008, 05:59:38 PM »
Re: Are You A Fool ??

YES i am , BUT i take care of my health , and I AM attentive to the true realities of this virus !!

that many of the recently infected have come to believe that this disease by definition is no longer a terminal illness. 

where does this come from .??

I am only saying that none of us should be foolish about this disease,

now are we being foolish ??

Controlling depression and stress is far more important to your wellbeing than the latest drug therapy

now i am curious, do we have a choice in this, not so long ago , someone tried to rob my place , he then came at me with a screwdriver that went to my mouth, i shall save you the details.

I have thought long and hard about how to place this subject here for discussion

this is more than a discussion, this is about "we old fart know better than you " i remembered being in the presence of a LTS from here, he told me , ' i feel like my face is caving in ' my reply ' why?  the BJ was so violent, ' he got very angry, then i understood and also where my bitchness got me !! SAME virus like you say, different stages, different times BUT different vocabularies TOO.

My message is often disturbing

NO it is not, you took all the horrors of this virus and jammed it down our throats. My french teacher used to say, Life (HIV) is like a bucket of shit, we must learn to take a teaspoonful each day. KINDLY allow me to do that and please DO NOT STIR in it. And when my teeth start falling one after the other or the brittleness of my bones, Dear Daddy Tim , i do not want your I TOLD YOU SO, I DO WANT you to reach out your hands to hug and comfort me, saying, I UNDERSTAND , i had been there !!

Welcome back, this might seem like a strange one, but believe me, it is anyway !! as i bothered to spend hours to collect my thoughts and put it in words so your presence can be felt among us.

Yours
Wd

Offline Moffie65

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  • Posts: 1,755
  • Living POZ since 1983
Re: Are You A Fool ??
« Reply #42 on: October 08, 2008, 06:08:05 PM »
Thank you all for your input.

Water Duck, sorry for the anxiety this post/thread caused you.  That was not the intent. 


Moving on.
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 David_CA

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  • Joined: March 2006
Re: Are You A Fool ??
« Reply #43 on: October 08, 2008, 07:27:44 PM »
I don't consider myself to be a fool about this disease.  Perhaps I somewhat bask in the fact that, for the most part, my health is good.  I'm fortunate that the drugs I have available are so much better than what many 'old timers' had to deal with.  Having access to good medical care and meds is something I'm consciously thankful for every day.  I'm blessed to not have to go through seeing most / many of my friends die from the same virus that I have.  For as carefree as I often am about HIV, in the back of my mind, I realize that my situation could change at just about any moment: that I could lose my job and insurance, I could have resistance issues, or start having bad side effects from the meds.  That's not my reality today, but it could be and is something that many others deal with daily.

A post like this does not cause me to be depressed, upset, angry, or feel any other intense emotions.  It's like a little reminder to enjoy life when it's good, handle it the best I'm able when it's not, and never take anything for granted. 

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 Sweet_C

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Re: Are You A Fool ??
« Reply #44 on: October 08, 2008, 10:43:41 PM »
Another newly diagnosed here.  This thread has really made me thankful for every day I wake up feeling good and healthy.  It's threads like this that help in not taking anything for granted.

I still have real difficulty thinking of HIV/AIDS as a terminal disease in this day and age.  Cancer runs in my family, so for me, a terminal illness means that the docs tell you that you have X months to live and that there is nothing else they can do for you.  You get sicker and sicker and you have no hope of getting better, barring a miracle. 

I think of HIV as a potentially life threatening, chronic disease.  From what I am reading, it sounds like if I take care of myself and vigilantly take the meds, I can have a reasonable expectation of living close to a normal life span, though nothing is guaranteed.
Tested positive on September 11, 2008

Online Miss Philicia

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  • celebrity poster, faker & poser
Re: Are You A Fool ??
« Reply #45 on: October 08, 2008, 10:49:00 PM »
Another newly diagnosed here.  This thread has really made me thankful for every day I wake up feeling good and healthy.  It's threads like this that help in not taking anything for granted.

I'm still surprised that so many people (evidently) were seemingly itching to hit that "report to moderator" button on this thread.  I'm still scratching my head at it a day later.
"I’ve slept with enough men to know that I’m not gay"

Offline atlq

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Re: Are You A Fool ??
« Reply #46 on: October 08, 2008, 10:56:14 PM »

 
My french teacher used to say, Life (HIV) is like a bucket of shit, we must learn to take a teaspoonful each day. 
 


I thought life was like a box of chocolates.....
“Keep up the good work....   And God bless you.”
  --  Sarah Palin, to members of the Alaskan Independence Party, 2008

Offline jkinatl2

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  • Doo. Dah. Dipp-ity.
Re: Are You A Fool ??
« Reply #47 on: October 08, 2008, 10:57:00 PM »
I'm still surprised that so many people (evidently) were seemingly itching to hit that "report to moderator" button on this thread.  I'm still scratching my head at it a day later.

That thought is not lost on many of us, nor is the eagerness of the moderators to come down on the poster.

Some of the formerly "banished" have a large and vengeful group of detractors. I would have hoped they would take that into account.

Color me disappointed, but not absolutely shocked.

"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 edfu

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Re: Are You A Fool ??
« Reply #48 on: October 08, 2008, 11:15:09 PM »
I'm still surprised that so many people (evidently) were seemingly itching to hit that "report to moderator" button on this thread.  I'm still scratching my head at it a day later.

I'm not surprised at all.  It's part of the denial syndrome and why there are such frightening statistics about new infections.  You know:  Take a pill a day, and all is OK; it's no big deal.  It's just a chronic infection.  It's like diabetes. Take a pill before you go out, and nothing will happen.  Take some pills for a month after you go out, and all will be well.  Etc.  

This has become standard behavior between the LTS and the newbies, between the HIV generations.  I have preached before about the gay generation gap, I know, and have been slammed for it.  Moffie feels this the strongest, I think, and he's also the bravest in addressing this issue--and he's suffered for it.  I feel the same way, but at age 66, I no longer feel it imperative to lay my head on the chopping block when this topic surfaces; I have other concerns and have given up shouting into the wind.  

Well, I guess I just laid it on the block anyway.  Chop away.... :-\
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline Lis

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Re: Are You A Fool ??
« Reply #49 on: October 08, 2008, 11:57:17 PM »
Alan.. LOL from one old toothless possie to the other...

Tim... you hold my heart..

Peter.. you saved my mind..

I thank you all for your courage!!
poz 1986....

 


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