POZ Community Forums
Main Forums => Living With HIV => Topic started by: nychope1 on November 26, 2010, 11:20:16 am
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If you are driving north on the FDR here in Manhattan and you look to the right you'll see the East River. In the middle of the East River there is Roosevelt Island. On the southern most tip of that island stands the shell of an old brick building. That building was used to quarantine people who contracted a perplexing virus called small pox. Once upon a time in NYC's history, they took people who had the small pox virus and put them on a boat and shipped them to that building on the island in the middle of the East River. If you were unfortunate enough to get small pox then you would surely have died, and most likely, alone on that island. That was only in the twentieth century. It was just as unfathomable to think of functional cures for viruses such as Small Pox, Polio and Measles then, as it is for the even more perplexing HIV virus today. Of course we hardly think about those "old" viruses today even though there is no known "cure" but rather a global eradication through vaccines and medications. HIV will surely join them.
I love all the commentary and everyone has a point. As I stated in another post in a research thread, there is a fundamental shift in the way the HIV virus is perceived. There is now a convergence of technology, engineering, new discoveries and an over all school of thought that are all pushing the tipping point. Mostly, it is economically more efficient to find a cure, whether that be functional or eradication.
In all of my reading and research I have not seen, in the whole time line of HIV, this kind of concerted effort to cross the "cure" finish line. The timing is right.
As well, it is coming from many different directions. I personally don't look to any one discovery or medicine as the magic bullet but the race is on and human nature being what it is I am always optimistic. The engineering of the current treatments are going to hit a one pill a day wall. Or better still, maybe a one dose a month wall. That means the only other direction to go is a cure and I believe the medical, research and HIV community fundamentally understands that.
Having lived in NYC for most of my 45 years and having known and seen people pass from this virus we are surely taking the current treatments for granted. And that is a good thing because that means it is just not enough anymore. We will progress, we will move forward, and one day, sooner than later, this forum will be something we barely remember participating in.
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Well said nychope
Some people are born pessimists. Its those who never give up, have hope, vision and faith that make the world go forward.
Having lived in NYC for most of my 45 years and having known and seen people pass from this virus we are surely taking the current treatments for granted. And that is a good thing because that means it is just not enough anymore.
Couldn't agree with you more nychope, we only have the current meds as bad as they maybe because our brothers and sisters, many of whom are sadly no longer with us, and the LTS who were willing to take the highly toxic meds in the early days.
If we sit back and accept the current situation we are surely doing injustice to those activists of the early days.
If we want better treatment or a cure, we have to keep the pressure on and keep fighting
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i will remain optimistic.period. yes im a newbie but as a gay man this thing was on our minds our whole gay life for those of us 40ish and younger.so were not really newbies.
cure this thing asap!
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I'm all for a search for a cure, but a tad confused how this post classifies as Research News
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well said nychope - very poignantly said.
there are a number of strands that seem to be coming together with the goal of cure - and it is true that without hope there is nothing. there is no purpose to life.
indeed - keep the pressure on - and remember to get in touch with the AIDS policy project - their lobbying efforts will surely make a difference. AIDS / HIV is not such a fashionable charity / funding target anymore. their objectives are very important.
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Yes, maybe it belongs in Off-Topic. Wasn't sure where to put it since I was referring to current research I put it here.
Best...
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I'm all for a search for a cure, but a tad confused how this post classifies as Research News
It doesn't and that's why I'm moving it.
Yes, maybe it belongs in Off-Topic. Wasn't sure where to put it since I was referring to current research I put it here.
Best...
No, it doesn't belong in Off Topic either. The main subject of these forums is hiv/aids, so if your thread has something to do with hiv/aids, it should not be in OT because that is for things off the topic of hiv/aids. Geddit?
It belongs in Living With Hiv because personal statements concerning how optimistic or pessimistic one may be about the state of current hiv research is all part of Living With Hiv.
Threads in the Research forum should only be about breaking research news or any new studies that have come out.
NY, for future reference, check out each individual forum to see if it has a Welcome Thread at the top of the page. If it does, make sure you read it. It will give you guidance as to what may or may not be posted there.
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NYC, I think your optimism is great. Believing that HIV can be cured is the first step in doing what you can to contribute to the cause. Visit the amFar page and donate some money while you're at it If everyone on this forum donated just fifty bucks we could do a lot to advance the objective. www.amfar.org. The donation option should pop up immediately.
Further, I believe that a cure is inevitable. If history has proven anything, its that the impossible routinely becomes possible. The issue is whether HIV is cured in the next five years as part of a concerted effort, or in 500 years as an afterthought in the back office of a lab. When I posted, it was out of concern that someone literally thought that the Interleukin 7 clinical trial would result in a cure "by Christmas". It won't. My recollection is that the trial hardly concerns itself with curing the disease. The researchers involved list curing the virus as a tertiary objective, and explicitly state they don't expect it to happen. Their goal is simply to see if they can affect the resevoirs in living human beings. In their discussion, the researchers explicitly neglect an attempt to affect the most terrifying and important resevoir of all, the brain.
For better or for worse, these experiments take YEARS. Do a search for "ensoli", the scientist who is behind the TAT vaccine which everyone is excited about. There are posts going back to 2006, and Ensoli's studies seem to be relatively well funded and effective. By design, biomedical research meanders along, sputters and more often than not finds itself at a dead end. Hoping for a breakthrough in the next few weeks will only lead to dissappointment. Disappointment will lead to disengagement, demonstrated by one responder who stated, "Do you have any idea how many times we've heard that? "The Cure." "HIV Eradication." You'll learn."
NYC, I don't want you or any other poster to "learn" that kind of thing. Thats why I posted what I did. Like it or not, curing HIV is a marathon, not a sprint, and the more people in the race the better off we are. By all means, hope for the best, but don't expect it, and certainly, try to apply historical context to what is happening here. None of you are getting a cure for HIV this Christmas. This doesn't mean that that you're not getting a cure.
PS: Did you mail your letters for the Aids Policy Project? Its still not too late! They even list a form letter, all you have to do is print it and sign it. http://www.aidspolicyproject.org/nih-letter.html
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wtfimpoz, well said.
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Hey WTF...
WTF? My posting had nothing to do with you my man. It's just the way I see things. Hope some of the folks here can relate. All I want for Christmas is my two back teeth. The last of my caps and veneers. Peace brother...
J
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nyhope.
love you man. i relate. and i too want it by christmas.and when people ask me what i want, i say in my head my health.period.
so yes i relate.loved your hopeful post. i like to read things like that ,makes me feel good and guess what? when we read feel good posts,our conciiounous pick up on that. and then you know what happens?we become healthier!!!!!!!!!!!!!!!!!!
keep em coming!!
who the heck can say no by christmast? wouldnt it be nice if there was studies we dont know about that have passed all the shit they need to pass that are released by dec 21?
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Thank you, Surf.. Love you too!
My dad used to say; "True luck is being prepared to take advantage of an opportunity when it presents itself."
The cure is among us now. Take your meds, if you are on them. Take care of your overall being and keep yourself healthy. When the day comes that a long term suppression or eradication of our virus is a reality we'll be healthy and ready to take advantage of it.
If I could only go back 10, 15 years and tell my gorgeous cousin and my dear buddies that they only need to take one pill a night and they would be OK and not get sick it would be a miracle and considered a cure. We are there now. You won't get sick. And before you know it, through FDA fast tracking and trials, a pill a day may turn into a pill a month. A pill a month may turn into five pills a year. Our sheer combined will, will make it happen.
Cheers Brother!
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you got it man!!
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I've been poz most of my life (infected while I was in high school in the early 80's)
I think from a LTS perspective, no I have never given up hope but I always view things with caution. A lot of it is coming to terms with this illlness and one's mortality. Believing that you will never get sick is probably not always realistic or an option for many. People still die in the US from this disease, but you don't here about as it's not publicized as much anymore. AIDS is brutal and HIV doesn't give a fuck about hope, or dreams or your plans in life.
Having said that, I think there are a lot of changes coming and we indeed have come a long way from when the whole epidemic started. I feel that I have learned to try to live in a balance of living day to day and making plans for the future.
thank you,
Sharkie
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If I could only go back 10, 15 years and tell my gorgeous cousin and my dear buddies that they only need to take one pill a night and they would be OK and not get sick it would be a miracle and considered a cure. We are there now. You won't get sick.
you need to wise up
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Hey Miss Phillicia aka Debbie Downer..
I am not going to indulge that remark too much. Being born and bred in New York City I don't need anyone telling me to wise up. I understand you have been on meds and hiv positive for a long time, I'm sorry about that, but that doesn't make you an expert on someone's medical future who has been recently diagnosed and healthy and have started on meds relatively quickly.
There are some folks here that fit that description and for you or anyone else to feel responsible to "wise them up" is just too bad. There is nothing I have seen or read that says otherwise. This whole spooky notion about, what used to be, is what makes a lot of newbies nervous about starting on meds.
If people get tested early and start on meds right away they are going to be relatively healthy for a long long time.
We're all gonna get sick. We're all gonna get old. We're all gonna die. Doesn't necessarily mean it's gonna come from HIV.
I found this forum to be very helpful to me when I was first diagnosed because I found it to be optimistic. If that has changed, well then.... I have little use for "realists".
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errrr...is someone gonna make popcorn??? This is gonna get good. :P
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errrr...is someone gonna make popcorn??? This is gonna get good. :P
IT BETTER NOT!!!
ElZorro, please do not encourage flame-wars with these kinds of statements. Consider yourself warned!
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IT BETTER NOT!!!
ElZorro, please do not encourage flame-wars with these kinds of statements. Consider yourself warned!
Yes, ma'am. My apologies. That wasn't my intent, but I can see how it could be construed that way. I was just trying to lighten the mood! Won't happen again :-X
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Hahaha... It suppose it could have. Though this is my last posting on this thread. I said my peace.
Always wishing everyone here thanks and the best.
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i live in ny's bubble! screw reality, i have my own reality and its great!
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The delusional false-hope brigade always amazes me with HIV.
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hope keeps me alive.
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Ms P didn't say anything was wrong with hope, she's talking about false hope.
Years (and years) ago, we used to grab onto everything that came along that "sounded" good. Then reality would always hit, and another good friend would die. I just lost another friend this last week. All the meds had failed him.
To take care of oneself, and trying to be optimistic is alright, but one needs to be realistic. HIV still kills. And if someone thinks they're immune from that, they're in for a rude awakening.
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hope keeps me alive.
Really? Handfuls of large pills keep me alive. That and a fair amount of doctor's appointments.
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i dont think anyone here doubts the seriousness of the illness.
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i dont think anyone here doubts the seriousness of the illness.
Really? That's exactly why I pointed out the ignorance of saying "I'll never get sick" which threw you girls into such a smelling salt tizzy.
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There should probably be another thread started as this one has strayed far from the original message.
It's pointless to try and argue with those who have had HIV/AIDS and been sick for a long time and who have valid reasons for their out look on this virus. It wasn't my intention to invalidate those of you who have that experience and are experiencing those conditions now.
Since there is a miscommunication at this point I think a clarification is in order.
There is enough valid medical evidence to warrant more than an optimistic and hopeful outlook on current management and future long term suppression and possible eradication of the HIV virus.
Especially for NEWBIES, who have in the last few years, been diagnosed and are doing well on the current meds available. Their chances of developing full blown AIDS and having HIV related illnesses has greatly diminished. Getting diagnosed early, staying healthy, taking their meds, not indulging in street drugs and other things that can compromise one's health no matter what they have will stave off AIDS for decades if ever. That's just a fact. There are so many more worse diseases to have than this in this day of age.
Further more, in my bliss, I still believe that even those who's immune system's have been damaged beyond repair from having had this virus for a long time and having their own personal medical issues still benefit and stand to benefit from current and future breakthrough's.
If you must rain on a parade of facts and hopefulness start your own hopeless thread you'll have a lot of responders! This here homey don't play that.
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very well put
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No one is saying they are enjoying living with this disease (AIDS-HIV it's all a continuum ). There is a lot to deal with being recently diagnosed.
There are indeed stages of coping and accepting a diagnosis of being positive which is why seeing a therapist or counselor is essential.
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There are indeed stages of coping and accepting a diagnosis of being positive which is why seeing a therapist or counselor is essential.
very well put
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Yeah, even though I blow through therapists like tissue paper in allergy season, I heartily promote a good therapist, when needed (and good THERAPY - when needed) during the course of HIV - which, as of this date, is a lifetime.
If there were no issues regarding HIV, then forums like this would wither. And if the experiences of those of us who have disclosed, suffered OIs, changed insurance (or had none), entered/exited the job market, found (and lost) love and friendships were no longer necessary, then it would be time to pack up shop.
Optimism is terrific! Realism is cool too... and one does NOT preclude the other.
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Ladies and Gentlemen..
I am announcing that I have discovered the cure for HIV. hic-up Though I have decided to keep it to myself.
Also, I am glad this thread will slowly move into obscurity.
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Getting diagnosed early, staying healthy, taking their meds, not indulging in street drugs and other things that can compromise one's health no matter what they have will stave off AIDS for decades if ever. That's just a fact. There are so many more worse diseases to have than this in this day of age.
If you must rain on a parade of facts and hopefulness start your own hopeless thread you'll have a lot of responders! This here homey don't play that.
The only fact about HIV is that there are none. I lost a good friend, who was an HIV doctor, got diagnosed early and was failed by every HIV med available at the time. He did everything right and he died anyways, so don't go making guarantees that do not exist. You make these wild claims, as facts, when they are nothing more than your opinion. Forgive me if I try and temper your hurtful comments, especially to all those readers, who are doing everything right, yet are still dying or living challenging lives.
Hopefulness feeds the soul, however it must be tempered by empathy and reality. Your comments are your opinions and nothing more. There are no facts here, just because you say it is so.
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AWESOME post nyc! I feel as though there will be a cure and have hope as well (as my screen-name implies).
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Mr. killfoile
That is a complete inaccurate statement from you taken out of context. I always preface anything I write here with a personal opinion clause or a quote or link back to where I read it.
There ARE facts about HIV. None of which come from me personally. I am sorry for your losses. If you knew me you would know I have experienced family and friends that have succumbed to AIDS. You are taking my hopeful message and spinning it around. New news on research and optimistic outlooks are important to the newly diagnosed whether that means a week ago or a five years ago.
That's all I can say. Please don't pull one part from a well meaning entire post to prove a point.
Read all of what I wrote.
Best to you...
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NYC, thank you for your message of hope. Being diagnosed with AIDS and dealing with KS and a lot of mental torment, it helps me to see that there is some optimism. Thank you :)
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If you must rain on a parade of facts and hopefulness start your own hopeless thread you'll have a lot of responders! This here homey don't play that.
I have little use for "realists".
I appreciate your hope, however to tell anyone, especially those who have been positive for perhaps half of their life, to start another thread because they disagree or offer a different opinion than you is uncalled for. There is nothing wrong with a discussion among those with differing opinions.
I have been positive for almost 5 years. I am pretty much indifferent to the research. If a cure or a method or prevention is found that would be wonderful!!! However if not while I am on this earth, I will continue to go about doing what is required to help fight my HIV. There is a whole litany of diseases, cancer, Parkinson's, MS, Alzheimer's....that have been around for much longer (and don't forget for the first few years of HIV/AIDS very few people with very little funding were conducting research) and cures still have not been found. Better treatment methods yes, but still no cure.
If I could only go back 10, 15 years and tell my gorgeous cousin and my dear buddies that they only need to take one pill a night and they would be OK and not get sick it would be a miracle and considered a cure. We are there now. You won't get sick.
I find this statement to be outrageous!!! When I speak about HIV in regards to my life I always call it "my HIV" not out of selfish motivations, but because if there is one thing I have learned on this forum and with other poz friends is that HIV affects each individual differently. To make a statement like this totally disregards the effect HIV has on individuals physically and mentally.
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The cure is among us now. Take your meds, if you are on them. Take care of your overall being and keep yourself healthy. When the day comes that a long term suppression or eradication of our virus is a reality we'll be healthy and ready to take advantage of it.
If I could only go back 10, 15 years and tell my gorgeous cousin and my dear buddies that they only need to take one pill a night and they would be OK and not get sick it would be a miracle and considered a cure. We are there now. You won't get sick. And before you know it, through FDA fast tracking and trials, a pill a day may turn into a pill a month. A pill a month may turn into five pills a year. Our sheer combined will, will make it happen.
Mr. killfoile
That is a complete inaccurate statement from you taken out of context. I always preface anything I write here with a personal opinion clause or a quote or link back to where I read it.
There ARE facts about HIV. None of which come from me personally. I am sorry for your losses. If you knew me you would know I have experienced family and friends that have succumbed to AIDS. You are taking my hopeful message and spinning it around. New news on research and optimistic outlooks are important to the newly diagnosed whether that means a week ago or a five years ago.
That's all I can say. Please don't pull one part from a well meaning entire post to prove a point.
Read all of what I wrote.
Best to you...
I have read all that you wrote and that is why I replied. I understand your message of hope and I share those sentiments, however, I would choose very different words to express that hope. What am I to think of you claiming that 10-15 years ago you could have told folks to just take their meds and everything would be great? That is exactly what thousands upon thousands of people did and they died anyways. Or your guarantee that today, you can just take a couple of pills and you will not get sick. I am afraid that is a guarantee that nobody can make.
While you believe me to be taking your message out of context, I ask you to reread what you wrote. As you read your comments, imagine if you are someone for whom, none of the medications work. Or that you have multiple complications from HIV infection that make your life very difficult. What are they to think, when you tell them that taking the meds will keep them healthy, never to become sick, yet it happens anyways. How might they feel, when everything you claim, goes against their reality? That is why I said that hope must be tempered with empathy for others.
Hope is critical for all those infected with HIV, but blind hope can be painful for those who do not fit your particular example and there are millions of them. I do want the newly infected to have hope, but I also want them to see HIV realistically, otherwise they will never learn how to live with HIV. Living with HIV involves an honest assessment of your health and using all the tools that we have, to remain as healthy as possible. For you to suggest that today's medications are some form of insurance, against becoming ill, is beyond irresponsible.
However, you seem to only want to cast rainbows, with no regards to the readers on this forum. We have newly diagnosed members who are having a very difficult time with HIV and for you to suggest that all they need do, to remain healthy, is to pop a couple of pills is incredibly cruel. So if calling you to task, for making incredibly insensitive comments, is raining on your parade, I am sorry, but I am only commenting on what you wrote. There are multiple ways to express hopefulness, without the need to trample on the feelings of others.
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You can spin and pick apart what I wrote anyway you like. It is an open forum. If there are a few folks here who got the original intent of this thread that is great.
I'm not commenting on this thread any further.
Best to you..
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Killfoile, well said.
I do want the newly infected to have hope, but I also want them to see HIV realistically, otherwise they will never learn how to live with HIV. Living with HIV involves an honest assessment of your health and using all the tools that we have, to remain as healthy as possible.
I can also hear moffie saying something to the same effect, although he probably would have been much more adamant....:)
It is an open forum.
Exactly, so why get so bent out of shape when others share differing thoughts. I find the thread interesting and appreciate what all have said. And I hope you won't let those differing thoughts diminish your hope, but will understand the intent from where they come from.