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RevAnn
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Part of today's problem
#241252 - 08/09/08 06:31 PM
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So let me qualify myself for those who don't know me. I am 40 yo, was infected in 1980 (through a rape).
Now, I am concerned that we have become our own worse enemies for education. I too am guilty. We are telling people that HIV/AIDS is not a death sentance. By doing so, we are telling people that HIV/AIDS is not to be feared. How ever, I think it is high time that we look at reality. The meds are helping some of us live longer and for some, healthier. However, the truth is that is all. There will come a time when the meds will fail and there is nothing more that can be done.
We need to focus on living our lives to the best of our abilities and enjoy our health while we have it. Besides, having life itself is a death sentence.
So instand of lying and saying AIDS is not a death sentence, we should guide people to learn how to live with the virus and enjoy life.
We need to show people we educate that there is life after testing pos and it is important to live it.
A
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Namu-Myoho-Renge-Kyo
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dj1979
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I agree completely. Although HIV/AIDS is now considered a chronic health problem rather than a life-threatening condition, it has to be monitored carefully, the meds are expensive, compliance with meds is difficult and essential, and there are many side effects of the meds. My own experience with meds has been pretty good, but I've only been on them for 6 months and they've made me a lot healthier and my labs a lot better. Thankfully we have Medicaid, which pays the $1500 a month that the meds cost. I know that I have to keep HIV in the back of my mind all the time, and I do the best I can to live life to the fullest every day.
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I'm not sure the message you are trying make in your post, I could split it into 2 parts, the first part is very depresing and for most you are telling us all that we will die early of aids no matter about the meds....no hope, the second part is be hopefull ? both parts are how you feel, I wish I could wish it all away.....................................be strong, I am trying..
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How Many Roads Must A Man Walk Down Before He Admits Hes lost
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I think RevAnn may have brought this post up because of one I posted earlier...or we're just experiencing a bit of syconicity....or it's just because many of us that have lived with HIV for a long time are concerned about this new attitude about HIV that is spreading. It's a dangerous attitude and leading to a rise in new infections and that is really depressing
It's not that we will all die early from AIDS in spite of medications. It's that the long term effects from the medications and just that the disease will catch up to all of us someday. The new research that is coming out after years of anti-retroviral therapy is depressing....and yes....HIV is depressing. Not everything in life can be made to be happy and beautiful. It doesn't mean you can't live life as best and as happy as you can, but you must be realistic.
You see I posted this because it's a subject that is in the forefront of my mind these days. My husband is one of those people the studies point to. My husband isn't going to be getting any better. To call a spade a spade. He's dying. Not today, not tomorrow, but his body is giving up and along with that is his will to keep fighting.
One day of activity now means two days of rest so he has to chose how to expend his energy. We've been either in the hosptial ER, the HMO infusion center or one of many doctor's offices 5 times this week. This afternoon he made them pull the IV out and told them he was going home. He'd had enough.
I was livid with him, but it's not my decision. I want him to be better. I will desperately miss him and not having him with me scares the hell out of me. Not being able to swoop in and take control making everything alright leaves me feeling helpless and confused. I want my magic wand back! I want our life back! I want to see his quick laugh and his clowning around that can send a group of people into spasms of laughter. It's few and far between these days. I'm trying to learn to accept that it isn't going to happen and that life evolves and we make life as we will. That doesn't mean we cant' find happiness, joy and laughter, the human spirit after all, has this wonderful ability to find good no matter what. I think that is what RevAnn may have meant in her second part.
There was a time when it was OK to discuss quality vs. quantity of life. This issue.... in light of the long term effects of ART is relevant today, but so many don't want to hear it and accuse those that don't follow the 'we can all be happy with HIV' theory as negative naysayers.
Below is a copy of what I posted to someone one the Am I Infected that was telling another person not to worry because after all....HIV is not a death sentenence.
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You have to know that HIV is not a death sentence.
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That isn't true and this line of thinking is contributing to the increase in new infections. “Why worry about HIV when all I have to do is pop a pill or two. HIV isn’t life threatening anymore. It’s no big deal”
While antiretroviral therapy has lead to an increase in years, we are now finding it's coming with a cost. While fewer people are dying from HIV itself, more are dying from the use of long term antiretroviral therapy. Studies are beginning to show the death rate increasing from liver disease, cardiovascular disease and cancer in people that have been on long-term therapy. More people are presenting in their middle age with diseases normally associated with geriatrics.
http://jama.ama-assn.org/cgi/content/extract/293/17/2081
http://www.thebody.com/content/art10190.html
http://www.thebody.com/content/art12984.html
http://gateway.nlm.nih.gov/MeetingAbstracts/ma?f=102276397.html
Because of life has been lengthen there is now an increase in HIV associated dementia and other neurological complications. Remember, even with an undetectable viral load, the virus is still present and still doing damage. Just at a slower pace, that's all ART does. Slow the virus down. It doesn't stop the progression of the disease.
From:
http://serendip.brynmawr.edu/bb/neuro/neuro01/web1/Mendillo.html
"With the advent of more effective highly active antiretroviral therapy (HAART) and thus increased life span of people with AIDS, neurological disorders are becoming a hot topic in AIDS research. In the early days of the epidemic, those infected with the virus could only hope to live for a short time before developing the symptoms of full blown AIDS, and death ensued shortly afterwards. The progress made in treatment in the past two decades has prolonged the lives of people with AIDS, to the point where diagnosis is no longer a sign of imminent debilitation and death, but rather an acknowledgement of a possible long road ahead with the aid of drug cocktails. There is also a strong possibility that the HIV infected person may develop HIV associated dementia after years of living with the disease (1). "
http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1107
http://www.emedicine.com/med/topic3151.htm
http://www.retrovirology.com/content/3/1/28
Make no mistake. HIV is still a very serious disease. It's a no win situation. Don't take the medications and you die. Take the medications and you still die, but for many after enduring years of debilitating complications.
Don't sugar coat this disease.
PS, I noticed I ended up with a smiley on my post. I have a new laptop and sometimes I end up hitting a wrong key. Hell sometimes the cursor jumps to strange places. I didn't mean to put a smiley up. There's nothing 'smiley' about any of this.
Edited by Esmerelda (08/09/08 11:05 PM)
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RevAnn
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Es. I had not read your prior post. But we seem to be on the same wavelength.
Depressing? Only if you let it be. However, I am trying to snap all of us back into reality. This is not a chronic dz and that is part of the problem. Saying AIDS is chronic is like saying cancer is chronic.
My 19 yo son recently told me that he stop using protection because if he gets infected all he has to do is take meds! I was floored. I had taught him better than that. However, he looks at me and thinks that he will have the same results. I explained to him that today the virus has not only mutated but also is drug resistant. I can only hope that I got through to him.
That is why I started this post. We need to be honest with ourselves and those we educate. I am "lucky" I have one of the earliest strains and I had been on the same meds for ten years, only doing a med change in the last year. So What about those who are getting infected as we speak? They maybe infected with a drug resitant strain that there is no treatment for.
Again, this is a reality check.
For those concerned about how depressing this post may sound, such is life with AIDS. I am not saying there is no hope, I just want us to look at the way we educate others and ourselves.
Let me end with this...
I have a great life. This is because I choose to be happy no matter how dark things seem to be. You have to live. Remember, however, a long life is not promised to any person. Any one could get hit by the preverbal bus tomorrow. So look for the bright spots and focus on them, just stay routed in reality.
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Namu-Myoho-Renge-Kyo
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I'm not sure how to respond to this thread, I will say this, I agree with most of what has been posted but don't really need reminded of it, I think we all live in hope that one day soon something better will come along, I personally believe there is too much money involved for there to be a cure or vaccine around the corner, the big pharmas won't allow it until they have sqeezed every dollar out of treating current HIV infected people, it is a sick greedy world we live in, believe me when I say there is a price on every one of our heads, new treatments are in the pipeline http://www.medicalnewstoday.com/articles/117656.php but do you really think they will be rush through for our benefit ? not a chance, when you have heads of departments that have patents - shares etc etc in the current treatments making them millions of dollars do you really think they would tell of a cure or another more effective treatment that doesn't require the daily intake of drugs..........................
It really sadens me when I read some of the stories from people here, what they are going through because of something we can't even see and there's a good chance it was the result of some sick experiment that went wrong.
we it all iahead of us, I just don't want to be reminded of it here.
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How Many Roads Must A Man Walk Down Before He Admits Hes lost
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RevAnn
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That's the problem, some just want to close their eyes and not deal with reality. As far as I am concerned, this is the place to have this discussion.
You keep raising the issue that you thin the drug co just want to mae money off us. Well then we need to stand up and speak with one voice. Much like what happened in the late 80's early 90's.
If you don't like my thread topic, then please, don't read it. It is my opinion and a very real concern. I have decided to mae people aware of the issues.
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Namu-Myoho-Renge-Kyo
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I agree RevAnn. It a fine line we walk. Trying to fight the stigma associated with people living with HIV balanced against keeping a healthy fear of HIV in those not infected.
When did it become taboo for people living with this disease to be censored about speaking out about this disease. I’ve seen many people at the end-stages of this disease fade from the boards, because when they tried to bring up this topic and how they were effected they were told to stop being so negative. People in great pain, fear and bitterness over this disease, being told to be quiet at a time when they probably most needed a hand to reach out. Yes, we all seek to live as well as we can, but when did it become a sin to acknowledge the sometimes impossible fight, or allude to feeling helpless and hopeless.
It's true that for those that have become infected in the last 5 years or so may see a change in medications and a drop in the possibly deadly complications from those medications.
But for today, a one of the important stories coming out of the XVII International AIDS Conference is the link between Abacavir and Heart Attacks.
http://www.thebodypro.com/content/confs/aids2008/art48046.html
Just last month Roche announced that they are no longer going to develop new medications. How long before other companies follow their lead. How long before the drug ‘pipeline’ dries up?
http://www.globalhealthreporting.org/article.asp?DR_ID=53271
It's true that by the time HAD starts to affect them they may have a way to stop it, but since they have been studying Alzheimer’s for years and still have no clue, it's doubtful they will be able to stop the virus from crossing the blood/brain barrier.
It's sad to see so many of the newly infected have bought into the whole "take a pill and be happy' line of thought. That they feel there is no need to continue to get involved with the HIV community and fight for services.
AIDS funding in the US has been flat funded for the last 7 years. It's becoming increasingly harder for ASO and ADAP services to fulfill the needs of the HIV community. Unless the HIV community is willing to bring up the difficult discussion about the fact the hype about HIV a chronic disease is merely wishful thinking, Then we will not only see no increases in funding. We will see drastic decreases.
Cunta – you might not want to be reminded that you actually live with a terminal illness and that even in this day and age thousands deal everyday with the debilitating effects from this disease and die from it. But if you don’t speak up today, then tomorrow may be too late for you. ‘Ahead of you’ will someday become now. Will you be ready?
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sorry if I offended, not my intention, I am a skeptic, I started drug treatment reluctantly after many weeks of debate and strong adivice from my doctor with an initial CD of 150, I have read and read and still do every day about the HIV debate, what really gets to me is the lack of answers from the experts, I have constantly asked my doc many questions which for the most part go unanswered, I know for sure that my HIV infection is not older than a few months when first diagnosed yet my bloods reflected something different, but I was scared into what I saw as no other option and started taking medication.
There are things that just don't add up about all of this, did you know that it is now the mainstream belief that HIV boosts the immune system, did you know that most of the HIV in your body reside in the intestines lymph nodes, and ARV's have no effect on these, if the mainstream belief that HIV boosts the immune system then that makes the whole measurement/monitoring process a complete crock of *******, and could also mean that ARV drugs are damaging the immune system, there is just so much of this that does not add up.
Anyway please feel free to post here as you see fit, I do understand where you are coming from and as I said in my earlier post I agree and believe most of it, I think about it every day as I'm sure most people taking medication do, my point was that posting about it here is pointless because we are already aware - not in denial as you suggest, I would like to learn more about the lives of people who as you say just fade away. One positive aspect of the bull that we are told is that my close relatives where told the same, they think I'm going to have a normal healthy life on the new drugs, well no worries for them "I'm normal" sometimes I feel like just telling them straight "I'm going to die a horrible death in the next 2 to 10 years - be prepared. My parents are old and have their own worries so I guess it's best.
Considering that most if not all people on this forum either have an HIV diagnosis or a close relative with same you are not really hitting your target audience which as you suggest are HIV- people who think having HIV these days is not as serious as was once perceived.
Revann -Your story is very sad indeed and my heart goes out to you and you partner, you are one strong brave individual and deserve more.
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How Many Roads Must A Man Walk Down Before He Admits Hes lost
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Considering that most if not all people on this forum either have an HIV diagnosis or a close relative with same you are not really hitting your target audience which as you suggest are HIV- people who think having HIV these days is not as serious as was once perceived.
I'm not sure if you are getting the point Cunta because THIS is the target audience that needs to wake up and address these issues.
It is up to the HIV community combat this nonsense that HIV is only a chronic condition and with a few pills a day all will be well. You yourself seem to buy into that. I wonder how you will feel in about 20 years. So many of the recently infected doesn't seem to realize the gravity of the situation they are now in.
It's up to each and everyone of us to raise the alarm over the increasing rate of new infections because of that attitude.
It's up to the HIV community to demand better treatment access and more research to develop drugs that might not carry the complications that long term drug use does (do you think the HIV- community cares one wit about that?).
It's up to the HIV community to press for better funding for those that are HIV+ and better prevention programs for those that aren't. It's up to us to speak out and educate.
It's up to each and everyone of us to ensure that the reality of HIV isn't lost in the Madison Avenue hype.
And as a side note: Want to know more about the stories of long termers that fade away. You, yourself shot down one. XXXXXXXXX has posted for a very long time. He used to go under another name, but he's had so many health issues and the depression set in, I guess he changed his name in response to how he was feeling.
I'm sure with all your reading you understand that depression and other neurological issues are a BIG thing with HIV. He's end stage, which is a nice way to say he's dying. He vented in a post about research on long term non-progressers.
You lectured him about his attitude and language. It might have been better if you had read some of his past posts before you did that. I haven't seen him post since that day. End stage isn't very pretty.
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buy into it, I wish I could, I thought I made it very clear that I saw no other option than to just take the pills for better or for worse, i had a CD4 of 150 after only 6 months of infection, something is wrong with me and after being tested the conclusion was I have HIV, until something changes I afraid I've chosen to take the pills reluctantly, do you guys or partners take pills, what influenced you ?
yes but I'm only suggesting that posting it here is not getting the message to the right people, we all already know, now if you mean we should make a coherent effort to get the message out then I agree. we are being told by our various medical experts that we are going to lead normal lives if we keep taking the tablets, this is fundamentally flawed and dangerous, dare I say total bull****, besides this we have many many more challenges which make single people like myself feel very very isolated as has been discussed on other recent threads. People are still getting very sick with this disease whether they take pills or not, personally I would like to have more visibilty of this.
Anyway I do generally agree with you certaintly don't want to have an argument about it.
Hope you understand.
look I'm sorry for the missunderstanding sometimes I read very literally and my posts are very specific, i have said I support you and your points,
PS I felt perfectly healthy before starting treatment, I refused to take any other meds to protect me before starting on atripla, in fact I should still be taking them but refuse. I have had the cold an eye infection, and ear infection which all cleared up quite normally without any other treatment, my body seemed to do it's job quite normally.
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How Many Roads Must A Man Walk Down Before He Admits Hes lost
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And as a side note: Want to know more about the stories of long termers that fade away. You, yourself shot down one. XXXXXXXXX has posted for a very long time. He used to go under another name, but he's had so many health issues and the depression set in, I guess he changed his name in response to how he was feeling.
Shot down ? If you read my post again you will find that I was interested in listening and finding out more, I wanted to understand what point was being made and why, I want to learn as much as possible about HIV, I am interested in long termers, I would say the drug companies aren't for obvious reasons, so stop attacking me I'm actually on your side, in the space of 3 months I went from HIV to AIDS diagnosis I think I have enough to deal with. If I'm reading my bloods correctly I won't have too long left to do anything, infected 6 months diagnosed with AIDS, either way I have a very virilent strain or my body isn't dealing with it very well, or the CD4 count is bull and is not a true reflection of my immune health, who knows. No doctor can tell me
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How Many Roads Must A Man Walk Down Before He Admits Hes lost
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How Many Roads Must A Man Walk Down Before He Admits Hes lost
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I don't see why you think the following items were inapproiate for a living with HIV forum. These are activist items and concern the HIV community at large. Where else do you think a discussion about getting out and making our voice heard should be held? On the 'Am I Infected" forum?
It is up to the HIV community combat this nonsense that HIV is only a chronic condition and with a few pills a day all will be well.
It's up to each and everyone of us to raise the alarm over the increasing rate of new infections because of that attitude.
It's up to the HIV community to demand better treatment access and more research to develop drugs that might not carry the complications that long term drug use does (do you think the HIV- community cares one wit about that?).
It's up to the HIV community to press for better funding for those that are HIV+ and better prevention programs for those that aren't. It's up to us to speak out and educate.
It's up to each and everyone of us to ensure that the reality of HIV isn't lost in the Madison Avenue hype.
You say you know all this as does everyone that is HIV+ so it isn't relevant, then maybe you could explain how you personally put this knowledge in real world action to better the community, both HIV+ and HIV- groups. RevAnn and I are talking about getting out and actually doing. Educating. Do you think that is done only on a forum. Perhaps some people reading all this will think about what is said and they will go volunteer to talk to groups of HIV-people. They will become certify to test and do risk assesment counseling. They will help raise funds for their local ASO. They will get involved with their regional consortia's where policy and goals for spending Ryan White funding are made. That's the point of this discussion and it certainly is relevant to a Living with Board.
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The following comments you made raised a red flag with me, but I'm willing to believe you are in search of answers, and not a closet denialist.
"I have read and read and still do every day about the HIV debate, what really gets to me is the lack of answers from the experts"
"There are things that just don't add up about all of this, did you know that it is now the mainstream belief that HIV boosts the immune system, "
"if the mainstream belief that HIV boosts the immune system then that makes the whole measurement/monitoring process a complete crock of *******, "
As far as addressing that denialist site and it's full lies based on half science. I'll let someone else with perhaps a calmer disposition about those idiots address all that and address the damage they have done. In the meantime, you can find plenty of past posts with arguments between posters and them. I hadn't heard much about them lately. I just figured they had all died off in denial.
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RevAnn
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My thread is for pos people. We are the ones that need to change the way we refer to our lives and our infection. If we change first, then we can change others.
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Namu-Myoho-Renge-Kyo
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