POZ Community Forums
Main Forums => Living With HIV => Topic started by: aztecan on November 24, 2012, 07:29:14 pm
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Someone I knew died Tuesday evening of AIDS.
He needn't have. He actually did very well on meds, but he decided he didn't want to take them.
He hadn't been positive all that long (not as long as I and some of the other LTS people have.)
He wasn't having any particular side effects, nor was he suffering from any other physical ailment.
He did have mental health issues, but he would not address them and refused any assistance.
So, he stopped his meds about two years ago. I watched as he wasted, became thinner, weaker and as he became less and less able to care for himself.
I arranged for home hospice for him, because he refused to go into the hospital or nursing home.
It occurred to me that his death process could be a great leaning tool for many of the younger people who are more recently positive.
I have seen hundreds die like this, but most younger people haven't seen anyone die of this horrible collection of diseases.
Ethics, and probably morals, prevailed and I didn't act on this idea, but I do wish others could have seen this.
Then fewer would be complaining about their one pill a day, or the relatively frequent doctor visits, etc.
I am not discounting these concerns, but I would like to put them into perspective, the "big picture," if you would.
Most interestingly, the guy's mother, who was with him the last few days of his life, was actually relieved by her son's passing.
I guess the strain of seeing him as he lay there was more than she was able to deal with for very long.
I can understand why.
HUGS,
Mark
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I hope he finds peace in his life. I can sees that Living with HIV is 50% in my mind, its not all about medication, blood test. We all have to accept that this virus might stay with us until the day we die, and we have to make a life out of it, even thought we have to change everything in life to make that happen.
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Hey Mark,
Believe it or not, I also have two friends in Hawaii who are in the last stages of the disease. They are partners and have fought this thing together for over 25 years. Hospice has been called in which usually means the inevitable. I really wish I could be there with them. Like you, I've lost so many friends, been at the bedside of many, and lots of memorials. Not so much these days, a blessing, but the same sadness comes over me when it happens as it did in the old days.
I'm sorry for your loss.
Best,
Jeff
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Thank you for sharing this story and I'm sorry for your loss .
Many of us that are fortunate enough to become a LTS will have to struggle with trying to find the way to show the newly infected that you can go on to live a full life if you can come to terms and except the responsibility's that comes with living with HIV .
I have had people come into my life who for whatever reason cant or wont except the diagnosis and as time goes on and you see them pretty much stuck in the same place , in denial or just not caring anymore what happens to themselves and its heartbreaking because you know that the disease will eat away at their spirit and eventually the body will follow .
I have that fear from time to time for new members on this forum , its always a wonderful day when they come around and take the next few steps out of fear and back into living again and you know they have a good of a chance as any of us at a happy life , a diffrent life than what they had planned but a good one none the less .
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Mark; My condolences, what a sad situation. While I am recently diagnosed, I have been somewhat close to the suffering of this disease a few times over the last 20 years - but nowhere near what others here have witnessed. I am thankful for the treatment that we have today, and would like to see it more available to others that need it too.
Again, I am sorry for your loss and I hope you and his family find peace.
Sincerely,
JM
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Sorry you had to needlessly witness this yet again. I'm not sure what's worse; watching those die early on who wanted to live and didn't have ability, or those who have the ability and choose not to.
I'm hope this story touches those struggling with the whole "pills for the rest of my life" hurdle.
Wolfie
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I do feel that for some people its not a matter of not wanting to find the skills that may help them survive , its a matter of they cant .
Ive seen it with addiction too . Its a sad fact of life that sometime people don't survive the things life challenges us with .
I'm sad to read this thread but I'm happy its being discussed .
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That is a sad story. Obviously there was a masochistic side to his mental illness. Assuming people who stop taking their meds, and start getting sick, are not deluded that some miracle cure is around the corner, then they know they are dying.
A fast suicide has criminal, moral and financial downsides, sometimes so important that suicide is not a option. Maybe someone needs the insurance money, that suicide would nullify, or something like that.
These are very complex situations because one thinks, obviously there should be heavy pressure to treat the mental illness because the mentally unfit person is putting themselves through extended suffering, and burdening everyone, and is effectively committing a long, but legal, "suicide".
Life is mysterious sometimes.
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my sympathies but gotten on here and seen
I was marked as being gay , which i'm not
5 kids and a loving wife I stopped taking the meds I want to beat it. 4 months and still going strong
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my sympathies but gotten on here and seen
I was marked as being gay , which i'm not
5 kids and a loving wife I stopped taking the meds I want to beat it. 4 months and still going strong
Hi Dale ... Can you please elaborate on what you posted here , I'm not sure what you mean by it .
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can't you read English ?
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oh i'm sorry you're not fron the u.s
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Yes Dale I'm from the US and read English . I simply didn't understand what you wrote and asked for a clarification . I'm the last person on the forum that would be critical of they way people write and wasn't trying to be ugly to you .
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I like to see you do my fucking job a kid I didn't think had it in my worst nightmare
as far as u concerned you can stop acting like a fag and be a man i'm not sorry for helping him
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my sympathies but gotten on here and seen
I was marked as being gay , which i'm not
5 kids and a loving wife I stopped taking the meds I want to beat it. 4 months and still going strong
Hey Dale,
Many pozzies I know are not gay. The virus doesn't care, and we shouldn't either.
If I am reading your post correctly, you stopped taking meds four months ago and say you are still going stong.
First, I am sure you are aware, or should be, this "going strong" is only temporary and death is the ultimate result of living with untreated HIV.
Also, though, you say you want to beat HIV, yet you are eschewing meds. How do you plan to beat it?
HUGS,
Mark
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I like to see you do my fucking job a kid I didn't think had it in my worst nightmare
as far as u concerned you can stop acting like a fag and be a man i'm not sorry for helping him
If you want to discuss issues, that's fine, but name calling will not be tolerated here. You have received responses from two members, asking you to clarify what your comments meant. It's not our fault that you are poz, so stop slamming folks who are only trying to help.
Joe
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Someone I knew died Tuesday evening of AIDS.
He needn't have. He actually did very well on meds, but he decided he didn't want to take them.
He hadn't been positive all that long (not as long as I and some of the other LTS people have.)
He wasn't having any particular side effects, nor was he suffering from any other physical ailment.
He did have mental health issues, but he would not address them and refused any assistance.
So, he stopped his meds about two years ago. I watched as he wasted, became thinner, weaker and as he became less and less able to care for himself.
I arranged for home hospice for him, because he refused to go into the hospital or nursing home.
It occurred to me that his death process could be a great leaning tool for many of the younger people who are more recently positive.
I have seen hundreds die like this, but most younger people haven't seen anyone die of this horrible collection of diseases.
Ethics, and probably morals, prevailed and I didn't act on this idea, but I do wish others could have seen this.
Then fewer would be complaining about their one pill a day, or the relatively frequent doctor visits, etc.
I am not discounting these concerns, but I would like to put them into perspective, the "big picture," if you would.
Most interestingly, the guy's mother, who was with him the last few days of his life, was actually relieved by her son's passing.
I guess the strain of seeing him as he lay there was more than she was able to deal with for very long.
I can understand why.
HUGS,
Mark
It's very unfortunate that this happened and saddens me that he took this route with the treatment that was available to him today. It must have been difficult for you to watch Mark.... It's definitely a reminder to me how serious this virus is.
Mark, thanks for sharing this with us. I wish things could have been different for him.
Dale, I'm married and with 3 kids myself. The choice you make is, of course, yours to do. But, I can tell you, the progression of this disease will only have one result. It's been proven over the last 3 decades. Also, please refrain from the derogatory remarks towards the members here who are some of the most supportive people I know. Sexuality has nothing to do with anything when it comes to living with this virus.
The member you directed your attack on is one of the most understanding and caring people on this site.
Also.. instead of hijacking this thread any further I would like to suggest that you create your own thread to talk of any issues you are having.
Mark, I apologize to you for taking part in that hijack and won't respond to him further in your thread.
Sk
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Hopefully Mr Gribble will come back and play nice . If I'm reading what he shared correctly this thread is the a perfect one for a guy like him . I would hate to see him miss out on getting the support he needs to go on and do what he needs to do in order to lead a healthy life .... and thank you skeebo ;) .
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Dale, you need to get a grip on your name-calling here and the very large chip on your shoulder. You're free to discuss whatever is on your mind but name calling and other hostile remarks are not permitted.
If you think someone has spoken out of turn to you, report it to the moderators as several have done about your fag comments, etc.
I'm giving you a warning this time. If it happens again it will be at least a time out. Don't lose the benefits you can find on this site by this kind of display again.
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I like to see you do my fucking job a kid I didn't think had it in my worst nightmare
as far as u concerned you can stop acting like a fag and be a man i'm not sorry for helping him
Sshortguy1 (http://forums.poz.com/index.php?action=profile;area=showposts;u=99872), you're still banned.
Ann
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Bingo, knew that's who this was.
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Bingo, knew that's who this was.
Yep , you were right . ;D .
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Bingo, knew that's who this was.
So what? Can we end the unfortunate, nasty hijack now and get back to Mark's topic?
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Someone I knew died Tuesday evening of AIDS.
He needn't have. He actually did very well on meds, but he decided he didn't want to take them.
He hadn't been positive all that long (not as long as I and some of the other LTS people have.)
He wasn't having any particular side effects, nor was he suffering from any other physical ailment.
He did have mental health issues, but he would not address them and refused any assistance.
So, he stopped his meds about two years ago. I watched as he wasted, became thinner, weaker and as he became less and less able to care for himself.
I arranged for home hospice for him, because he refused to go into the hospital or nursing home.
It occurred to me that his death process could be a great leaning tool for many of the younger people who are more recently positive.
I have seen hundreds die like this, but most younger people haven't seen anyone die of this horrible collection of diseases.
Ethics, and probably morals, prevailed and I didn't act on this idea, but I do wish others could have seen this.
Then fewer would be complaining about their one pill a day, or the relatively frequent doctor visits, etc.
I am not discounting these concerns, but I would like to put them into perspective, the "big picture," if you would.
Most interestingly, the guy's mother, who was with him the last few days of his life, was actually relieved by her son's passing.
I guess the strain of seeing him as he lay there was more than she was able to deal with for very long.
I can understand why.
HUGS,
Mark
^This should be stickied and linked to the top of the Living With forum.
Thanks for sharing (and posting) this Mark. I'm very sorry for the loss you experienced, but am very happy to see that you still managed to think of how you can benefit others, even in this time. But that was to be expected, as those of us who have come to know you, are aware of how selfless you are. We are very lucky to be honored with your participation in these forums.
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I'm sorry to hear this heartbreaking news Mark. In your job you mentor so many people of all shapes and sizes and do it well. You can't control what everyone does, though you can passionately try to help, as I know you do. Your work is a blessing in this world. Hugs.
Jody :'(
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Mark, I am sorry to hear about your friend. It is truly sad that he chose this option, especially considering he didn't have any major issues with the meds or from the virus. But, mental health issues cause people to do things they wouldn't normally do, and mental health often goes unchecked. So, I think it is probably safe to say he didn't "choose" this in his right mind.
At the HIV clinic I go to, I've noticed the docs never ask how I'm doing mentally. I've talked to other patients in the waiting room about this. They all said they've never been asked how they are doing mentally. I had to seek out my own therapist. That's fine for me, but I know many won't speak up, unless they are asked. And, sometimes you have to ask several times, before a patient will open up. I've been telling every doc and nurse I see there that they should always inquire how patients are doing mentally. I believe it should be one of the first questions each visit. From reading other posts here, I don't think many are asked about mental health.
Again, my sincere condolences to you and his family.
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Mark, I'm sorry about your friend and send you my condolences.
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Mark, I'm sorry to hear about your friend. I don't mean this as criticism, but I just don't understand people wanting to quit meds. Certainly, the situation is different if one is suffering from side effects that cause issues. I've heard people say that they 'just didn't know if they could handle taking pills every day.' I guess I've had so many sinus infections, ADHD, etc and have taken pills most of my life that it's a non-issue. Maybe it's the acceptance thing; some people just never come to grips with their having HIV. Personally, getting as sick as I did 6 years ago (within a day of being exactly 6 years) was the wake-up call that I had to get serious about this virus. I knew that if I hadn't gone to my Dr. when I did, I would have soon died, and I wasn't ready for that. Perhaps your friend was just tired of living, but who knows. At any rate, it's very sad for others involved.
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Sometimes the very best response we can offer in a situation like this is to live our own life more purposefully, more joyfully, and more fully. This way, despair, never gets the final word and others get a valuable witness in moving forward.
As I am fond of quoting at the end of the AMG memorial service (the words of Pryor at the end of Angels in America) "I bless you all. More life! The great work begins!"
Mark, you are truly one of those angels...keep up the heavenly work!
Gary
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a good of a chance as any of us at a happy life , a diffrent life than what (we) had planned, but a good one nonetheless .
True. I remind myself of this every day.
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Schedir, I deleted your post. We do not allow denialist crap on this website and that's exactly what your post was - denialist crap. Do it again and you risk being banned.
Consider yourself warned.
Ann
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No problem, I expected my post to be deleted. I did not post denialist crap, I posted my own comment which was only meant to spark a thought in those who would read it. However, I will not mention it again. Like I said, I did not intend to offend anyone with what I wrote, and it seems obvious I had a good reason to do so.
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No problem, I expected my post to be deleted. I did not post denialist crap, I posted my own comment which was only meant to spark a thought in those who would read it. However, I will not mention it again. Like I said, I did not intend to offend anyone with what I wrote, and it seems obvious I had a good reason to do so.
I've been around long enough to recognise when someone is parroting denialist propaganda when I see it.
If you want to go down that road, that is your choice. Just don't expect to use this forum as a means to temp others to follow you into a preventable death from eschewing necessary hiv treatment.
Again, consider yourself warned.
Ann
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Yes, I have been warned and just to inform you, I was not spouting propaganda. You read my post and I have been on this forum for a while you can see that clearly. However, I will not post anything like it again, don't worry.
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However, I will not post anything like it again, don't worry.
Too right you won't.
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Mark.
I very much appreciated reading what you wrote although I wish the circumstances -- your friends passing -- were different. The thought of stopping meds has crossed my mind every now and then ... a bit of a romantic fantasy, I know. Your words express something important, for I think many of us to reflect upon from time to time, and not just those who are newly diagnosed or the young. Again, my thanks.
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...
He needn't have. He actually did very well on meds, but he decided he didn't want to take them.
He hadn't been positive all that long (not as long as I and some of the other LTS people have.)
He wasn't having any particular side effects, nor was he suffering from any other physical ailment.
He did have mental health issues, but he would not address them and refused any assistance.
So, he stopped his meds about two years ago...
Hi Mark,
Sad story and I truly sympathize.
I have been confronted with similar situations (older people not able or willing to take their medications)
I guess doctors see those kind of cases where some people will not want to take medicine for religious or other beliefs.
It must be tearing people's heart including the health care providers
The following question means no offence, but, I wonder... Don't hospital nurse or families have the right to 'crush the meds' and mix with food ?
We do it to our pets, don't we.
Do we have to place free will above life ?
Because of families or friends, we, lay people are sometime caught in contradictory situations that we have not been prepared to
Anyway thanks for reminding us that ranting about the mere number of pills or their color is futile
Eric
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Mark -
Thank you for this post. It touched on a few things I've been thinking about.
I'm glad this post is pinned to the top as well
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Hi Mark,
Staying with a situation we find so unnecessary, that reminds us off our past is so hard and only the truly strong are able to do it , condolenses to you dear heart.
love
michael
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you were a great friend caring for him.
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That is very sad Mark .
After all these years I still know of people that choose the same way to go .
I have found no amount of talking or help will change a man's mind when it is clear he has made a decision .
I thank GOD daily for still being here :)
Weasel
P.s. I am rather open with being an AIDS victim , I don't ask for pity , But I sure show people they can get off their asses and LIVE !
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my sympathies but gotten on here and seen
I was marked as being gay , which i'm not
5 kids and a loving wife I stopped taking the meds I want to beat it. 4 months and still going strong
Awesome that your going strong. I'm bad off now, but starting complera my brother. Let's hope this medication works cause taking 3-5 pills with my stomach and esophagus problems this one a day pill should be a diamond in my life and help me live a normal life
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I hope he finds peace in his life. I can sees that Living with HIV is 50% in my mind, its not all about medication, blood test. We all have to accept that this virus might stay with us until the day we die, and we have to make a life out of it, even thought we have to change everything in life to make that happen.
Sorry to hear about your friend Mark. RIP.
I agree with Anqueetas that Living with HIV is 50% in mind or I would say even more. We have to change ourselves, our lifestyle, behaviours, attitude etc and be strong and fight this till the end. Never give up hope. Its like running a Marathon. Along with physical ability to run long distance.. it's the strong mind that keeps on the run long facing all the obstacles. The moment you think its enough, you stop, give up and you loose the run and fail to reach the target place. We should be strong physically and mentally to battel HIV come what ever obstacles..
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I was unaware of this thread, until reading about it in "Letters" in the latest POZ magazine. (I'm rarely in the Living With forum, I pretty much hang out in LTS).
A real tragedy; it is especially heartbreaking for those of us who have seen family, friends and loved ones die because there was NOTHING available to help them. It almost happened to me; thank God the protease drugs came along in 1996, and Saquinavir saved my life.
I'm not sure why someone would choose not to take meds; then again, I'm not sure why people do (or don't do) a lot of the things that go on nowadays. I hope I don't reach the point where I feel as if I don't have anything left to live for. I know, first-hand, what it is like to die from AIDS, and there is nothing good about it.
May we all find the peace we need, in whatever form that takes in each of our lives.
Alan :'(
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Im very sorry to hear of your loss.
Sadly it seems like others have experienced this loss as well, giving up meds and all.
I lost a friend to the same situation, he realized it was a mistake when it was too late.
Hugs and condolences to you.
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Mark,
My sincerest condolences. This is a difficult situation to endure.
I have a friend in Philly in this same situation - he was diagnosed twelve years ago and has refused to take meds. While I am not privilege to his exact numbers I know they are low as he has been in the ICU for three weeks of the last eight. He has also been showing signs of HIV related dementia - calling me to talk and then a bit in to the conversation saying he doesn't know who I m and hanging up. He is only 29.
Best wishes, it isn't easy.
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I have had the same idea about the film making , the balance between ensuring conditions are maximised so that folk get tested and the fact that HIV care has moved on forward blinds people to the er illness part , which off course is still here.
Your other post about the provision off HIV care in your area could also make a interesting Documentary. in fact Mark maybe you should be the subject then loads off issues will get aired. Plus your Fan club will soar. Which at least would be fair.
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Very sad story, Mark. Hiv is the nastiest staff that an individual can get. It is really so much nasty. However, it requires one to be the most strong to live with. Anyone can live the most with treatment. Just only realize that it is treatable.
The story reminds of mine that I refused to take treatment for almost eight years and finally end up onto my death bed until I get into treatment which I am now on the top. From the first day of my treatment onwards I believed that I will be living life to the fullest possible with treatment. I work almost 12 to 14 hours everyday not to remember this nastiest virus I am living with.
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Mark, you brought me strength when I needed it 8 years ago. May I return the favour. I wish I had a good friend like you. Caring, earnest and thoughtful. Hugs.
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Mark,
Your post came to mind as I read Phil's post today about his brother.
I hope those who are newly diagnosed will hear what has been said.
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Hi Mark,
I have been thinking about those who live with this and work in it as well,like you , the MODS and others.
And all I can say is I hope you get what you need to sustain yourself, in fact more than sustain also flourish ,with love and respect,
m
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Hey all, I haven't posted here in a very long time. Just taking a break today between shoveling snow and saw this thread. I've been poz now for probably 10 years (diagnosed 9 years ago) and I have to say the MEDS do work!! I hope anyone and everyone would adhere to what their Dr., friends, & loved ones would tell them regarding taking care of one's self.
Cheers everyone
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Hi All,
I don't see it as a sad story, I must clarify that I don't intend that to sound hurtful, but I must also say that I understand why some choose to not take meds. I've done it myself. I also understand where mental illness can distract you. We all make our choices in life on how we live , and include on how we live with HIV. Some have the strength to fight it, and others do not. Like Cancer or any other terminal illness, people have the right to decide for themselves how they live with it, fight it, or not. I don't know all about your friend Mark and I do empathize with your grief. sadness for the loss of a friend is always difficult. We all consider ourselves free, and able to make decisions on what we do, taking the meds etc. I've been trying to cope with major depression for a long time, and did for a few weeks stop taking meds. I was fortunate to get counseling, and anti depressants.
I still take all my meds, but at 50 and living in Rural NSW Australia, I have my own future plan. I am not bitter, but in the 11 years I have been HIV+/HepB+ I have had numerous other issues that mean time in Hosp, and large amounts and numerous medications. Some of us seem to go on for ever, with few issues and then others like myself get many other issues. I spent more of 2013 in Hosp than out of it. In fact I cannot remember a year that has been Hosp free. In one year I was in Hosp for 11 months( 2006). I cannot hold down a full time job, but the state handout says I have to seek work. I cannot get a disability payment, despite having 13 specialists in different fields the state says I'm not sick enough. I am also type 1 Diabetic, the usual Cirrhosis of the liver, severe neuropathy, in my feet and hands, to name but a few. Some days it's a struggle to want to get up and face reality. I've also been on antidepressants for a few years. For me there will come a time when the quality of my life ceases, but I won't take the slow option. This is not meant as anything more than a statement, hopefully not to pity or be sad about. I will make my own choice. I am a do not resuscitate, no tube feed, etc. When it gets to the point I can't wipe my own bum, or it decides to fall out all the time like it did in 2007-2013 I'm out of here.
Mental illness and depression can be blamed, but realistically if people for what ever reason decide that they don't want to take their meds, then realistically we have to respect their wishes. We can only advise, but cannot force anyone to take anything. If someone is that determined there is nothing you can do but try to support them as best you can. I think that is the hardest part. Supporting someone who refuses to do what the majority considers normal( I hate that word, but can't find a better word, I should have stayed in school longer than i did) We live in a free world, and not every decision that people make is the one we want them to.
I don't want any of this to sound nasty, I am not in the least bit mean to anyone. I am sorry if anyone is offended.
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Sounds like me? I will have been positive 30 years in Jan. I have had a heart attack, and it seems like I can't go 6 months without being in the hospital with pancreatitus. 6-8 months ago. I have taking all the drugs I have to take. I have played with the virus, I didn't think I would ever have a problem with it, Never took my meds right. Now it may be winning. I live near Tampa, Fl. and the Dr I have don't seem to care if I live or die! I am looking for another one, But I have lost most of my muscles and fat. My butt is gone. I am weak, and boney. My cd4 was 100 two months ago, Now I am scared I am on the way down. I am taking my meds as close as possible to the times I am suppose to. I hope it works and stops it. I have decided this is not a virus to play with, it will win. Any body have ideas how to try and put my muscle back? Oh forgot to say, I stay sick at my stomach all the time. And have pretty much quit eating because usually it starts my pancrease to hurting. And getting pain meds in florida is sad.
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What are PWA dying from the most? Sad question, but I need/ would like to know? Plz
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Mark,
I am truly sorry for the loss you experienced. I was recently diagnosed in March this year. I am in the "one pill a day for the rest of my life hurdle". I fear that I will fail adherence.
But your post definitely changed my perspective. Us recently diagnosed have access to some of the best meds compared to 30 years ago.
Your post touched me and I am more relieved to know that I in fact have a great chance at living a long life. It's just so hard to accept the life changing news. I will always look back to your post to remind me of my chance to live whenever I start having doubts.
HUGS!!!
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he got tired of living in a world that treats him like a leper.some people live in areas worse than others.some people put up with is 20,25,30 years.you don't get that if your not 'there". it doesn't mean your a stronger person per say,they may very well have went thru alot more than you.I see other poz people treat someone very poorly all the time also.this ones on disability-target.this one doesn't have a car anymore-target.or even the 'my viral load is lower than yours" If it was only the illness we had to fight,it would be hard,but it far from the only thing unfortunately.
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Mark, I am sorry. But I must say that I have been going through the same feelings as your friend.. 26 years feels like enough.. My CD4 is 185 and I dont care.. I talked with my dad in Aztec and it sounded like a good place to let God take charge I do miss the place I was born (Farmington).. I live in an abusive home, I hate all of it and it is not condusive to for my mentat or physical health.. I wish you all the best , but Im starting to feel like Mark A..
PM me some time
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Just before reading this I was about to post a form regarding my mess as I am newly diagnosed and having been on meds for the last 2 months and was about to complain about weight gain caused by it but this puts things in perspective . My only question now is will medication ultimately help to avoid this happening to me or anyone else . I know it may sound ignorant but as I am new to this all I am not sure what will happen to me after this diagnosis
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Just before reading this I was about to post a form regarding my mess as I am newly diagnosed and having been on meds for the last 2 months and was about to complain about weight gain caused by it but this puts things in perspective . My only question now is will medication ultimately help to avoid this happening to me or anyone else . I know it may sound ignorant but as I am new to this all I am not sure what will happen to me after this diagnosis
Take your meds. Period. Take your meds.
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I'm sorry to hear that, hope he's in a better place now
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Hi Mark, sorry about you had to pass through this again.
Such a sad story made me recall those days, some 20 years ago, when I was volunteering in an NGO, and saw many of my friends die in a similar manner, due to lack of meds, later diagnose or med failure. I wasn't HIV poz back then...
One of those friends was doing more or less well on meds (those mid-end 90's meds), but he got a sentence to go to prison for 3 years due to robbery and other minor crimes he committed when he was younger. At that time, treatment for HIV was not fully available inside prisons here, so he had to stay one year without ARVs. At a certain point, he was given bi-therapy, which evidently didn't work.
When he was out of prison he was really ill, and had developed resistance to meds. He died some months later. For his parents it was a relief. I visited them every now and then during a certain time after my friend was dead, and they never talked about him again, as if he never existed.
I felt the whole thing was truly unfair, and my friend was unfortunate, for one year after he died HAART was made available inside prisons too. If the court would have been a bit delayed dealing with his case, maybe he will be alive or at least could have lived some more years. That was the way things were back then.
Nowadays, I think maybe some of us, at a certain point, could consider suicide as a possibility if things get really bad, or if one feel so sad, so sick at heart and soul, that nothing seems to be worth to keep going on. And leaving ARVs definitely, in such circumstances, could be seen as some kind of alternative to a suicide, which is more drastic, scary, and painful. Leaving meds gets you to a gradual death which is, in the end, an idea we all have in a corner of our minds and figure out as the final part of our lives, nevermind what lifespan expectations may we have. Hence, less scary, and, in some way, already assumed since it will happen anyway. If someday I am in the circumstance of considering such a decision, I think I will explain it to myself in this way.
And all this makes me conscious about how difficult life could become at any moment. It's terrible to face death or to see others dying. Now, living in a time of treatment success, PREP and all the stuff, we usually tend to forget that many people is still dying of AIDS, today, right now. Young people simply think and feel they are too young to die, and as many of their friends, partners and colleagues are also young, for them death is only a remote possibility or an accident.
Big hugs!!! 8)
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Wow Mark,
Your post has really struck a chord with me today. I have been poz for over 12 years now and have been taking meds for just over 10 of them.
Today i was told i have severe osteoarthritis in my spine and I know over time it will only get worse BUT i have a positive outlook in life ( excuse the pun ).
No matter what gets thrown at me, whether its daily pain or the total loss of libido i have endured for years i still am grateful to be here.
Its only when you read of long term patients who saw and lived through what must have been a horrific nightmare of seeing numerous friends and family die around them. It makes me so thankful that i still can enjoy life and look past a little pain and self heartache to truly appreciate that i will live a pretty normal life.
As you say many new guys moan and complain about taking a one tablet regime. when they should be looking at the flipside of that which really would mean going back to the days of no treatment. Your friend was obviously very troubled and i hope they have found peace and rest.
Take care of yourself
MC xx
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Chris99
Check with your physican
A few months back my doctor had me approved for Growth Hormones called serostim
They are to help me increase weight and body mass
I'll just say this they are working
I've gone from 123 pounds to now 146
But more importantly is the muscle and strength I'm gaining
I highly recommend
However they are very costly lucky my insurance covered it
I tested positive 10 months ago my most recent labs
I was 146 pounds
C-4 64
VL- 39
Now I know my c-4 is still very low but six weeks ago it was 32 so it is increasing and I'm feeling much healthier
I must say I'm dedicated to my Meds
And take the faithfully
But my biggest asset has been my attitude & outlook !!!
Amen Brother Stay Strong
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Two weeks after knowing I was positive I had a conversation with someone who is now a good friend, is also positive and had lost his partner to AIDS a couple years back. This conversation has been the one that stuck to me the most by far.
He said that he has seen what AIDS will do to you and that he as I should be is so grateful that there are these magical pills that will keep you away from that with so insignificant side effects compared to AIDS.
Be grateful he said, each time you take your meds you have to be grateful ...and I am, everyday.
I have tried to remain in a positive and hopeful mindset towards significant and insignificant, small and big things. It has made it possible for me to be at peace. It's a challenge but totally doable!
Stay strong everyone! And let's pray for those who are not as lucky.
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This is very powerful to read and I thank you for sharing something that is painful and personal. It really does open up your eyes to the reality that taking one pill a day and having to constantly work through the emotional issues isn't so bad when you put it in to perspective. We are very blessed to be given the opportunity to live. Millions have died and millions will continue to die and it is an absolute tragedy. I wasn't feeling too awesome today but reading this story was a reminder of how precious life is and how much we should appreciate being given the opportunity to take medications and live a healthy life. I am very sorry for your loss and I am sure that your kindness and compassion was greatly appreciated by your friend.
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Very sad situation, may be rest in peace. Sorry for your loss.
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To all. You know we all are not much different than each other. I just started reading the forums seveal days ago. I was feeling sad, depressed, heavily burdoned, scared, unloved, alone, thinking why me. Why here I am sitting on my sofa in my home typing to you all that I've never met and whom I can empathize with. I've read posts of sadness, heartbreak, anguish, love, posts of fear, no matter what they were important to each of you and to those affected. Even the moderators have so much love. Until now I never reached out for support because I thought no one could *feel* the way I do, I thought I was unique in my thinking, i thought no one cared, I thought I had to face my fears alone, but I realized that no matter the circumstances, the distance, of how we got here, we are here and I have never in my life seen such love come from such awesome people. Bless you all. Your posts made me feel much better. Diagnosed in 93, CD 4 46 in 2002, Combivir / Sustiva in 2002, Atripla 2011, now starting Genvoya next week. UD CD 4 470. No OIs other than thrush. So I thank you do much for your posts and support.