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Author Topic: At peace with my decision to stop taking meds.  (Read 17747 times)

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Offline brockhare

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At peace with my decision to stop taking meds.
« on: May 03, 2011, 02:45:23 PM »
This isn't a "feel sorry for me" rant.  I am honestly curious about others who have decided that they no longer want to take their meds and are at peace about it.  For many of us, our lives are not what they used to be.  Mine has changed due to some cognitive impairment about 15 years ago, which lead to a loss of several clients, and work hasn't been the same.  It's caused some learning disabilities which hinders changing careers, not to mention the whole SSI/MediCal situation covering my medications.  Anything I would do would be in the realm of self-employment, because there aren't jobs with benefits in my field where I live, and relocating is cost prohibitive at this point. Not to mention, I'm not sure I could work 40 hours a week.  I'm 49, have C.O.P.D. and get tired easily.  Although I do try to walk and get some exercise on a regular basis.    
There are certainly bigger issues than this, however, my limited career choices, lack of cultural activities due to my community, and my less than optimum brain all contribute to a quality of life that is no longer worth living.  Does anyone else feel this way?  If so, have they decided to give up quantity of life for quality.  My sister is the only person I have told that I've quit taking my meds, she understands.  She has seen how much my life has changed.  My personality has gone from a gregarious, extrovert, life of the party, to a total introvert.  I've become almost agoraphobic.  Most of this is situational, but some is due to brain damage.  I'm not asking for advice, just would like to know others who might have chosen this same path.  

Thank you for reading my post.  Sorry if it is a downer for some.  For me, my decision gives me a lot of peace.  

HIV Positive 25+ years
CD4 375 (highest it's ever been while on meds.)
VL undetectable.
« Last Edit: May 03, 2011, 02:56:54 PM by brockhare »

Offline denb45

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Re: At peace with my decision to stop taking meds.
« Reply #1 on: May 03, 2011, 03:31:40 PM »
I'm 49, have C.O.P.D. and get tired easily.  Although I do try to walk and get some exercise on a regular basis.  

That's good, you can only do what your body will allow you to  ;)

There are certainly bigger issues than this, however, my limited career choices, lack of cultural activities due to my community, and my less than optimum brain all contribute to a quality of life that is no longer worth living.  Does anyone else feel this way?
  NO, I don't  ???

 If so, have they decided to give up quantity of life for quality.  My sister is the only person I have told that I've quit taking my meds, she understands.  She has seen how much my life has changed.  My personality has gone from a gregarious, extrovert, life of the party, to a total introvert.  I've become almost agoraphobic.  Most of this is situational, but some is due to brain damage.  I'm not asking for advice, just would like to know others who might have chosen this same path.  

Nope I wanna live, and I'm not going outta this world just yet  ::)



Thank you for reading my post.  Sorry if it is a downer for some.  For me, my decision gives me a lot of peace.  

HIV Positive 25+ years
CD4 375 (highest it's ever been while on meds.)
VL undetectable.



SO, if your @ CD4 of 375 w/ a VL undetectable, you do realize what will happen to you if you stop taken your Meds...........right?  and have you spoke to an out-reach-program, or your local ASO?  talking to someone might give you a better out-look on your situation, I mean why throw-in the towel now after 25 yrs? Think about what your doing  :-X lying down and dying should NOT be your 1st option here  ;)
« Last Edit: May 03, 2011, 03:39:15 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Dachshund

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Re: At peace with my decision to stop taking meds.
« Reply #2 on: May 03, 2011, 03:40:10 PM »
It's going to be difficult to talk to folks that have chosen this path. Most are gone. Since you're not seeking advice I won't suggest talking to your doctor and a mental health professional.

Offline denb45

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Re: At peace with my decision to stop taking meds.
« Reply #3 on: May 03, 2011, 03:55:39 PM »
It's going to be difficult to talk to folks that have chosen this path. Most are gone. Since you're not seeking advice I won't suggest talking to your doctor and a mental health professional.

 ??? don't you just hate them dear John posts  ???
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline AlanBama

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Re: At peace with my decision to stop taking meds.
« Reply #4 on: May 03, 2011, 04:13:49 PM »
I wish you the best.   I will tell you that I know how it feels, from the "dark side", back from the days before we had the protease drugs (1995-96) and I was dying from AIDS.  It was a terrible thing....I would have gladly taken ANY medication that might help.

Stopping meds and letting nature take its course can get really ugly, and I imagine that since you are a LTS you know all of this and are prepared for the onslaught of all that ugliness. 

Best wishes to you, in whatever you choose.

Alan  :'(
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Jeff G

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Re: At peace with my decision to stop taking meds.
« Reply #5 on: May 03, 2011, 04:21:40 PM »
I once felt the same as you do and was at peace with my decision . I changed my mind about the time my lower body was covered with Kaposi Sarcoma lesions . I was so sick and in pain at the time changing my mind seemed like too little too late but I did survive .

I can tell you that if you are at the point in life where you are making the decision to give up then you are most assuredly suffering from depression , if you will discuss it with your doctor and get the treatment you need you will see life is worth living again . Good luck and get some help so that you get back to living again .


Offline Matt39

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Re: At peace with my decision to stop taking meds.
« Reply #6 on: May 03, 2011, 04:22:38 PM »
This isn't a "feel sorry for me" rant.  I am honestly curious about others who have decided that they no longer want to take their meds and are at peace about it.  For many of us, our lives are not what they used to be.  Mine has changed due to some cognitive impairment about 15 years ago, which lead to a loss of several clients, and work hasn't been the same.  It's caused some learning disabilities which hinders changing careers, not to mention the whole SSI/MediCal situation covering my medications.  Anything I would do would be in the realm of self-employment, because there aren't jobs with benefits in my field where I live, and relocating is cost prohibitive at this point. Not to mention, I'm not sure I could work 40 hours a week.  I'm 49, have C.O.P.D. and get tired easily.  Although I do try to walk and get some exercise on a regular basis.    
There are certainly bigger issues than this, however, my limited career choices, lack of cultural activities due to my community, and my less than optimum brain all contribute to a quality of life that is no longer worth living.  Does anyone else feel this way?  If so, have they decided to give up quantity of life for quality.  My sister is the only person I have told that I've quit taking my meds, she understands.  She has seen how much my life has changed.  My personality has gone from a gregarious, extrovert, life of the party, to a total introvert.  I've become almost agoraphobic.  Most of this is situational, but some is due to brain damage.  I'm not asking for advice, just would like to know others who might have chosen this same path.  

Thank you for reading my post.  Sorry if it is a downer for some.  For me, my decision gives me a lot of peace.  

HIV Positive 25+ years
CD4 375 (highest it's ever been while on meds.)
VL undetectable.

I think it is a very brave and courageous decision and I happen to know at least a handful of people who made a similar decision (although they had not been poz or on the meds for your length of time) and who are still with us and actually healthier and happier than they had been for years.
It is a fact and truth, that for some people (especially those who went on meds without actually having any real illness before starting) the toxic effects of ARVs can cause them to have a worsening quality of life. Some of the toxic effects of ARVs are very enduring and some people will get ill even after stopping them.
I think that only *you* know how your body feels, and how the quality of your life has been affected.
I genuinely wish you well, I hope that stopping the meds gives you back some quality and for as long as is humanly possible.
I think you deserve support and even encouragement to follow through with your choice.
I hope you manage to maintain a healthy diet and help yourself with some good quality nutritional supplements.

Very best wishes.

Offline Jeff G

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Re: At peace with my decision to stop taking meds.
« Reply #7 on: May 03, 2011, 04:38:04 PM »
Matt 39 gives bad advice on regular basis so take anything he says with a grain of salt .
« Last Edit: May 03, 2011, 04:40:29 PM by jg1962 »

Offline Matt39

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Re: At peace with my decision to stop taking meds.
« Reply #8 on: May 03, 2011, 04:47:03 PM »
Matt 39 gives bad advice on regular basis so take anything he says with a grain of salt .

I wondered when the attack dogs would come out. Everything is so black and white in your fear-induced, conformity-at-all-costs and defensive world - and you expect anyone else wanting to be a part of that?
Do you remember the SOVIET UNION? (or maybe even a kindergarten!)
Having a different opinion wasn't allowed. Your kind of personal attack is reminiscent of that.
Get a life.

Online Andy Velez

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Re: At peace with my decision to stop taking meds.
« Reply #9 on: May 03, 2011, 04:47:49 PM »
Matt, I want to caution you as I think has been done previously. The Longterm Survivors section has particular requirements for members to post. By definition you are not a LTS and should not be posting here, however well intentioned your motives.

Please remember that in the future.

And just in general let's get back on to topic here and skip any sniping back and forth. Thanks for the cooperation of all.
Andy Velez

Offline denb45

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Re: At peace with my decision to stop taking meds.
« Reply #10 on: May 03, 2011, 04:49:07 PM »
So, Matt39 here is my question to you, so your saying that you think that not taken any AVR's isn't a bad thing ???  you say you know a hand full of folks, but, are you not taking any meds, knowing something or someone and actually doing it aren't the same thing, now isn't it, who the fuck are you some kind of angel
of DEATH  ???

THANK YOU ANDY  :-*
« Last Edit: May 03, 2011, 04:51:57 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Online leatherman

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Re: At peace with my decision to stop taking meds.
« Reply #11 on: May 03, 2011, 04:53:20 PM »
For many of us, our lives are not what they used to be
all over the world today, 80 and 90 yr-old people are bemoaning the fact that they aren't young and healthy anymore too; but few of them are going off their meds - especially meds as important as antiretrovirals which probably kept you from dying many yrs ago already.

I'm 49, hiv+ for 26 yrs, been on disability for 12 yrs, haven't worked a 40-hr week in nearly 20 yrs, and have never had a cd4 over 318. Sounds similar to your life doesn't it? But goodness, you've obviously been well enough in these intervening years to even still keep working. Do you really believe that just because you can't work anymore, that it's time to die? Even with failing health, thousands and thousands of people lead happy, and even productive, lives still.

I stopped meds for quality of life a couple times in the mid 90s so I can sorta understand. However the drugs were and treatments for side effects were vastly different then. I ended up in the hospital nearly dead every one of those times. I can't imagine putting all this struggle into living all these years and making it through most of the difficulties (though I'm sure the future will hold more) and quitting again to let nature run it's course.

obviously, unlike matt's advice, you realize that stopping ARVs will allow the HIV to flourish and soon enough you'll be as sick as all our friends were in the late 80s - just before they died. I would kindly suggest that to be wanting to follow that scenario you are dealing with significant mental/emotional issues and seriously need to seek professional help.

Your post here, especially with the history you have related, clearly means you should know the consequences of your actions, and you should know that there won't be anyone to commiserate with you and say that they understand - because all the people that have gone off meds like you have proposed, well, those people are no longer walking the earth today. Your post clearly sounds like a cry for help, and that's what you should be seeking out - counseling and support from an ASO, a mental heath counselor, or your doctor for help with the side effects and other health concerns that you have. Please make a phone call tonight or tomorrow to seek outside help.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline Matt39

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Re: At peace with my decision to stop taking meds.
« Reply #12 on: May 03, 2011, 05:06:19 PM »
Matt, I want to caution you as I think has been done previously. The Longterm Survivors section has particular requirements for members to post. By definition you are not a LTS and should not be posting here, however well intentioned your motives.

Please remember that in the future.

And just in general let's get back on to topic here and skip any sniping back and forth. Thanks for the cooperation of all.

Maybe you should read the post of jg1962 which was an unwarranted personal attack on me.
I refer you back to impartiality and your profession. Surely your role here is to moderate personal attacks and insults?
Please reconsider that.

I was attempting in my original post to give some support to the OP, which he clearly very much needs and I didn't expect to get attacked. That's bad enough but even the OP is now getting attacked, when what he needs is love and support.
I'm feeling fairly nauseated by the display of some here.
I wish the OP well, no matter what the other bitter people here think.
« Last Edit: May 03, 2011, 05:09:38 PM by Matt39 »

Online Andy Velez

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Re: At peace with my decision to stop taking meds.
« Reply #13 on: May 03, 2011, 05:18:06 PM »
No one is exempt from the rule for civil behavior here, Matt.

So everyone needs to pay attention to that.

But by the rules of the site you are not supposed to be writing here, Matt. If you continue to do so you are going to get yourself a Time Out. Consider this a warning. 
Andy Velez

Offline Dachshund

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Re: At peace with my decision to stop taking meds.
« Reply #14 on: May 03, 2011, 05:52:52 PM »

I'm 49, hiv+ for 26 yrs, been on disability for 12 yrs, haven't worked a 40-hr week in nearly 20 yrs, and have never had a cd4 over 318. Sounds similar to your life doesn't it?

No, it's not similar at all. He works and is worried about not being able to work.

Offline brockhare

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Re: At peace with my decision to stop taking meds.
« Reply #15 on: May 03, 2011, 06:12:56 PM »
I do appreciate all your responses.  I shouldn't have said that I wasn't looking for advice, because maybe I am.  I usually see a counselor, although I haven't been going recently.  I take medications for bi-polar II disorder, which tends to be episodes of depression more than mania.  All this said, I'm not depressed per se, I just don't know how much longer I want to live my life the way it is.  I'm such a different person now, the once fun loving individual is gone, and has been for some time.  (years).  Except for rare occasions, and they usually involve alcohol.   

I really appreciate each and every one of you for writing.  Thank you for taking the time. 

Offline Dachshund

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Re: At peace with my decision to stop taking meds.
« Reply #16 on: May 03, 2011, 06:22:25 PM »
We all understand how difficult it is to age with this disease. That's one reason we started the LTS forum. Feel free to talk and we'll feel free to give you more advice than you'll ever need. ;D

Offline Jeff G

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Re: At peace with my decision to stop taking meds.
« Reply #17 on: May 03, 2011, 06:36:53 PM »
In light of the fact you haven't kept up with your appointments with your councilor perhaps postponing stopping meds is a good idea until you have had more time to think this through .

If you stop now you may have some resistance issues to deal with down the road , perhaps using this forum for support and returning to see your doctor may be the best solution for the time being . What do you think about that ?   
 

Online leatherman

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Re: At peace with my decision to stop taking meds.
« Reply #18 on: May 03, 2011, 06:53:35 PM »
He works and is worried about not being able to work.
I was worried about not working too, once upon a time; however, I didn't think death from stopping treatment was the correct option. Instead I was trying, by showing some of the similiarities, that people can continue to live full lives (ie keep housing, food, etc) even if they are unable to continue working.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline denb45

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Re: At peace with my decision to stop taking meds.
« Reply #19 on: May 03, 2011, 07:07:34 PM »
Now you see brockhare you have to look at things differently, everything isn't all Gloom & Doom, your reply posts sounds like your willing to do that, and that's a very good sign  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline wolfter

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Re: At peace with my decision to stop taking meds.
« Reply #20 on: May 03, 2011, 07:38:53 PM »
I read this post earlier and debated how to respond.  I too made this decision several years and thought I was comfortable with it.  I didn't realize at the time that it was a form of sanctioned suicide.  I was suffering terribly from the sudden death of my life partner.  I watched my quality of life diminish through the years but it was tolerable because of my constant support.  It wasn't until I was virtually blind and racked with meningitis and looked like a living skeleton that I realized the big D wasn't what I anticipated.  Luckily, I once again rebounded.

I certainly hope you take all our comments to heart and at least postpone your decision until you've worked through it.

wishing you the best!
Greg
Judging someone does not define them, it defines you. 

True peace is not merely the absence of war, it is the presence of justice.

Online Andy Velez

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Re: At peace with my decision to stop taking meds.
« Reply #21 on: May 03, 2011, 09:02:42 PM »
Brock, I am glad you have found some helpful support here. Your feelings are very familiar and shared ones to many here.

Keep talking. I also urge you to not act impulsively. I know it's a cliche but an accurate one about despair and discouragement...give it more time and this too shall pass.

We want you to stick around and from experience we can say that stopping your meds will lessen the likelihood that you will keep on and be able to get to better days again.

Thinking of you and in solidarity.
Andy Velez

Offline brockhare

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Re: At peace with my decision to stop taking meds.
« Reply #22 on: May 03, 2011, 09:52:39 PM »
Again thank you for all your responses.  I am, for now, going to continue to stay off my meds.  It's been about 5 weeks..  I've done this one other time for about 7 months, and the guilt of my leaving my parents behind was too much.  Now my parents are 75 & 80, and who knows how much longer either one will live.  I'm certainly not telling them anything.    

I will however, take the advice of many of you and see my therapist, also talk to the doctor about depression meds.  See if I can improve my mood/outlook, then go from there.  For now, I really do feel like a weight has been lifted, knowing that I may not have to live another 5 years in my current situation.  I feel trapped and stuck in so many ways.  

Offline sharkdiver

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Re: At peace with my decision to stop taking meds.
« Reply #23 on: May 03, 2011, 11:27:28 PM »
I think it is a very brave and courageous decision and I happen to know at least a handful of people who made a similar decision (although they had not been poz or on the meds for your length of time) and who are still with us and actually healthier and happier than they had been for years.
It is a fact and truth, that for some people (especially those who went on meds without actually having any real illness before starting) the toxic effects of ARVs can cause them to have a worsening quality of life. Some of the toxic effects of ARVs are very enduring and some people will get ill even after stopping them.
I think that only *you* know how your body feels, and how the quality of your life has been affected.
I genuinely wish you well, I hope that stopping the meds gives you back some quality and for as long as is humanly possible.
I think you deserve support and even encouragement to follow through with your choice.
I hope you manage to maintain a healthy diet and help yourself with some good quality nutritional supplements.

Very best wishes.

 

Dear Moderators,
Is there any way you can remove this person's posts from this thread, since this non LTS member is giving thoughtless advice? I think it detracts from helping our new LTS member and allowing him to sort out his issues.

Thank you

Offline Solo_LTSurvivor

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Re: At peace with my decision to stop taking meds.
« Reply #24 on: May 03, 2011, 11:54:37 PM »
I think it is a very brave and courageous decision and I happen to know at least a handful of people who made a similar decision (although they had not been poz or on the meds for your length of time) and who are still with us and actually healthier and happier than they had been for years.
It is a fact and truth, that for some people (especially those who went on meds without actually having any real illness before starting) the toxic effects of ARVs can cause them to have a worsening quality of life. Some of the toxic effects of ARVs are very enduring and some people will get ill even after stopping them.
I think that only *you* know how your body feels, and how the quality of your life has been affected.
I genuinely wish you well, I hope that stopping the meds gives you back some quality and for as long as is humanly possible.
I think you deserve support and even encouragement to follow through with your choice.
I hope you manage to maintain a healthy diet and help yourself with some good quality nutritional supplements.

Very best wishes.


I'm wondering if I detect a bit of a dissident undertone in this post?  ???
don't equate intelligence with lack of masculinity
Jim Phelps, Mission Impossible
____________________________

Seroconverted: Early 80s
Tested & confirmed what I already knew: early 90s

Current regimen: Atripla. 
Last regimen:  Epzicom, Sustiva (since its inception with NO adverse side effects: no vivid dreams and NONE of the problems people who can't tolerate this drug may experience: color me lucky ::))
Past regimens
Fun stuff (in the past):  HAV/HBV, crypto, shingles, AIDS, PCP

Jan 2012: 818/21%
Apr 2012: 964/22%
Jul. 2012: 890/21%
Oct. 2012: 920/23%

Still UD after all these years

Offline Dachshund

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Re: At peace with my decision to stop taking meds.
« Reply #25 on: May 04, 2011, 07:13:38 AM »
Now my parents are 75 & 80, and who knows how much longer either one will live.  I'm certainly not telling them anything.    

  

You're right who knows how much longer they will live. But do you really want them to go through the pain of burying their child? Sometimes it ain't all about us.

Online Andy Velez

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Re: At peace with my decision to stop taking meds.
« Reply #26 on: May 04, 2011, 08:21:10 AM »
Dear Shark and All,

The problem with removing an entry when there has already been interaction in relation to it is that doing that creates confusion afterwards.

Fortunately the thread has moved back on to its original focus and the firefighting has stopped. With everyone's cooperation we can keep it that way and hopefully be of some help to Brock. 
Andy Velez

Offline Nicolas2

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Re: At peace with my decision to stop taking meds.
« Reply #27 on: May 04, 2011, 09:08:07 AM »
If so, have they decided to give up quantity of life for quality.

I don't understand where the quality part exactly is when someone stops with medications...

Online Andy Velez

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Re: At peace with my decision to stop taking meds.
« Reply #28 on: May 04, 2011, 09:36:37 AM »
Nicolas, you're welcome to read in LTS. But the rule is very clear about who qualifies as a Longtermer and you don't. So please respect the rule of the site and don't post in this thread or in any others in this section. If you haven't already read the opening thread in this section, please do so.

Thanks for your cooperation.  
Andy Velez

Offline lipoenvy

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Re: At peace with my decision to stop taking meds.
« Reply #29 on: May 04, 2011, 10:11:50 AM »
Stopping meds to avoid prolonging life is not a path I nor anyone I know have chosen, though I know at least one person who has flirted with the idea.  It's quite a different matter from considering stopping meds because of intolerable side effects.  Cognitive impairment presumably is from HIV and the body's response to it, not from meds; stopping meds is very unlikely to make quality of life better.

Feeling trapped and stuck, feeling that one has no options or choices left, is the classic mindset of the suicidal.  I have been there.  It wasn't true that I didn't have options -- just that I rejected options as unacceptable for various reasons, usually having to do with fear or rigid beliefs.

I was never the life of the party, but my distaste for most interaction with humans has increased markedly, and I can relate to your agoraphobia.  It doesn't help when someone says "hello, again" and plunges into being chatty and I have no memory of ever meeting this person.

Our lives change.  For everyone here, our lives have changed radically, and in ways we would not have chosen.  We have experienced losses of all sorts -- deaths of those we knew, loss of work or social position, loss of physical and mental function, and change of emotion (in the case of depression, dulling of emotion, which in turn makes new memories more tenuous).  All those losses bring grief.  For some reason we might think it's okay to grieve the death of a loved one but selfish to grieve the loss of our abilities.  But any loss needs to be grieved.

Imagine we're survivors of Atlantis.  From the lifeboats, some will spend their time surveying the wreckage of all they once cherished under the waves beneath them.  Some will jump into the water to join those who are gone.  Some will start rowing, even with no other land in sight.  We make our choices.  Each has to do what is right for him, and there's no reason to condemn any choice, but we hope each choice is fully informed.

If you're up for some reading, I found Stephen Levine's Meetings at the Edge helpful in looking at ways to deal with big, unwelcome life changes.

I'm glad that you will be seeing your therapist and talking to your doctor.

lipoenvy

Offline Nicolas2

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Re: At peace with my decision to stop taking meds.
« Reply #30 on: May 04, 2011, 10:25:02 AM »
Nicolas, you're welcome to read in LTS. But the rule is very clear about who qualifies as a Longtermer and you don't. So please respect the rule of the site and don't post in this thread or in any others in this section. If you haven't already read the opening thread in this section, please do so.

Thanks for your cooperation.  

Sorry! To be honest - I didn't read the opening thread.
My mistake!


Offline Theyer

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Re: At peace with my decision to stop taking meds.
« Reply #31 on: May 06, 2011, 06:01:12 AM »
To be honest I do not understand your decision to stop HIV meds .

I have re read your posts and conclude you are angry at not being the life and soul off the party, and mixed up with not being in the place you imagined you would be  approaching 50

I think your sister is being very brave.

As others have alluded to you are not yet experiencing OI .s therefore I see this as some what of a honeymoon period
for you.

I am left wondering if you have in the past given up any meds you where on for bipolar.

I hope you get to discuss this action with a therapist or anyone who will listen but also challenge you.

I apologise if you have had long periods off fighting illness, other than bipolar.

yours
Theyer
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline RichardfromIndy

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Re: At peace with my decision to stop taking meds.
« Reply #32 on: May 07, 2011, 06:27:58 AM »
Hi, It is gratifying to see that you are willing to talk to a therapist and your doctor about your decision to quit taking your meds.  In my 21 years of hiv+ status I have never seriously considered not taking my meds.  Certainly, it has crossed my mind, however, it is difficult for me to give up the fight for my life.  I am mainly looking at what I have to offer others that may or may not be hiv+.  In 1996 I joined a 12-Step recovery group that has been very helpful in not only being able to get a better understanding about myself and the decisions that I have made that led to my health issues.  Plus attending meetings offers me the opportunity to talk about things that are bothering me.  Using a therapist, or even your doctor as a support in your physical and mental healthcare is a positive step in the right direction.  The other part of making certain that I take my meds is that I don't care to go through the physical challenges that would be in front of me given the nature of this disease and how debilitating it can cause a person to become.  I am hopeful that you reach a final solution to your decision that will allow you to accept the love and concern for those that you have developed a relationship with over the years. 

Offline brockhare

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Re: At peace with my decision to stop taking meds.
« Reply #33 on: May 07, 2011, 01:02:58 PM »
I can certainly appreciate why someone would not understand another person deciding to chose death over life.  However, I have a very different take on life & death.  My life is NOT anywhere near what I would have hoped for anymore.  I do spend lots of time helping others, and love to do it.  Unfortunately I'm limited as to what I'm able to do for others. 

As for death, of course I'm afraid of the pain one must endure to get there, but death itself is not scary to me AT ALL.  I have very strong spiritual beliefs. 

As I've said, I will talk with my doctor about my depression meds.  Although, I'm not really suffering from depression as much as anxiety.  I had anxiety long before I quit taking my meds.  It had been under control for 10 years or so, and it's back again.  I don't like suffering with it.  It causes paranoia, and a whole slew of social issues that make life a living hell.  I've suffered with serious illnesses before, but this anxiety bothers me more than anything. 

Again, I appreciate all of your comments.  I certainly consider your feed back. 

Thank You!

Offline brockhare

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Re: At peace with my decision to stop taking meds.
« Reply #34 on: May 07, 2011, 01:05:39 PM »
Sorry, I didn't answer the question as to whether I've given up my bipolar meds before.  NO, I've never!  I still continue to take a whole slew of medications for bipolar, high blood pressure, and (to be honest) other things I don't even remember.  I've simply quite my 3 HIV meds. 

Offline Theyer

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Re: At peace with my decision to stop taking meds.
« Reply #35 on: May 08, 2011, 08:15:27 AM »
Now I  have even less understanding about  your decision.
Thanks for posting back and I wish you luck
take care
mhtv
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline HeLookaLikaMan

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Re: At peace with my decision to stop taking meds.
« Reply #36 on: May 08, 2011, 09:56:46 PM »
@brockhare:
You asked in your original post, "Does anyone feel this way?"  Yes, I do feel that way sometimes, and yes, I have considered stopping meds several times.  I've also considered several quicker and less painful forms of suicide. 

Like you, I also experience despair sometimes due to the diminished quality of life wrought by having HIV for 20+ years.  Actually, I don't know if the decline is caused by HIV, the meds, the anxiety or something else. I do IT work, and I've also suffered cognitive decline that has diminished my ability to learn and think. So far, I have always come out of the despair enough to decide to press forward.  I will probably fall into the despair again, and I will probably come out again.  But, I don't know what will happen next.  It's a one-day-at-a-time thing for me at this point. 

I have found that just dealing with today--as opposed to trying to cope with a mountain of uncertainty and fear--helps me cope with the monumental difficulties of dealing with the issues we long term survivors are faced with.  Like you, I have concerns/fears about work, medical coverage, mental decline, having enough energy, increased social isolation and career change issues.  The key for me has been to deal ONLY with the things that I can affect NOW, TODAY, and not worry about those things I'm currently powerless to affect.  I use the Serenity Prayer all the time.  It helps.

God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
and Wisdom to know the difference.

Even if you don't believe in a god, the prayer is still very useful.  It's not magic...it takes practice.

Best wishes.


Offline brockhare

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Re: At peace with my decision to stop taking meds.
« Reply #37 on: May 09, 2011, 12:10:54 PM »
Thank you "Helooklikaman".  I am in a different place today.  My best friend, who lives on the opposite coast, called me yesterday, and I confided in him what was going on.  This is something I just don't do.  I'm sure that's the problem.  I always want to present myself as up, and positive, no matter what's going on inside my head.  I'm sure that's why I took to writing on this website.  None of you know me, which makes it a safe place for me to express (what I perceive to be) any negativity. 

I'm in a place where I am forced to make some major changes, and I think I'm really scared!  I don't really want to die, I just don't know what to do, so quitting the fight seemed to be the easiest.  Although I've spent many years in therapy, (simply because I enjoy it)  I can be, at times, very unaware of what's really bothering me. 

I guess I need to figure out where to start today.  Thank you again to all of you who took the time to write.  I suppose I was reaching out for answers, and didn't realize it.  Sometimes, because I have such a strong belief in the afterlife, I forget that I can find happiness in this one.  I'm always in such a hurry to get to the next thing, which includes whatever comes after our time on earth.  Today, I'm going to have to work on finding some joy in the here and now. 

Offline Theyer

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Re: At peace with my decision to stop taking meds.
« Reply #38 on: May 09, 2011, 12:59:35 PM »
  Today, I'm going to have to work on finding some joy in the here and now. 

Now I do understand that and wish you all their is in attaining that goal.
with love
mhtv
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Joe K

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Re: At peace with my decision to stop taking meds.
« Reply #39 on: May 09, 2011, 01:20:57 PM »
However, I have a very different take on life & death.  My life is NOT anywhere near what I would have hoped for anymore.  I do spend lots of time helping others, and love to do it.  Unfortunately I'm limited as to what I'm able to do for others. 

As I've said, I will talk with my doctor about my depression meds.  Although, I'm not really suffering from depression as much as anxiety.  I had anxiety long before I quit taking my meds.  It had been under control for 10 years or so, and it's back again.  I don't like suffering with it.  It causes paranoia, and a whole slew of social issues that make life a living hell.  I've suffered with serious illnesses before, but this anxiety bothers me more than anything. 

Hey Brock,

I empathize with so many of your feelings, as I also suffer from depression and anxiety. I've been poz for 27 years and in my prior life, I was a network specialist, maintaining 900 VW/Audi dealers through a satellite system. That job required a lightning quick mind, which I had for almost ten years, before the effects of being poz, or the meds, caused a marked decline in my mental acuity. Soon after, my health became so precarious, that I was forced to go on disability, where I remain today. That was in 1995 and this is 2011 and I can tell you that the past 16 years have been the best years of my life. The reason I share this with you, is to suggest that if you insist only seeing what you believe to be missing in your life, you will never find the answers that you seek, nor the contentment you deserve.

At one time, I felt as you feel, that the quality of my life, had been so diminished and so many of my dreams were forever beyond my reach. I totally get that feeling and I think it's a very valid way to feel. That being said, however, I hope you will consider that feelings are not good or bad, they just are. They also do not always represent "reality" rather they color our perception of "reality", and you seem to be unable to see what your "reality" may really be. I am not saying you do not grasp your reality, instead I question why you insist on measuring yourself against goals, that involved a different you?

The goals I had in life, involved a Joe who did not suffer from depression, anxiety, HIV and a myriad of health problems, but that is the Joe I was left with, so I had a choice. I could refuse to accept my declining condition and bemoan the dreams I lost, all the while, blaming myself or others, often both, over things I had little control over. I could have spent all of my time, reminiscing on the life I "could" have had and most probably I would have killed myself. What an incredible waste that would have been. I eventually came to the conclusion that if I wanted real change, then that change must come from within me and that led me to my other option, which involved redefining what I wanted from my life and pursuing things that made me happy and with any luck, content.

In one way you sound like you have given up, but I believe that to be untrue. You have been poz far too long, so you know the pain that can bring and you also know what most probably will happen if you stop taking your meds. To me, making a conscious decision, to possibly subject yourself to a horrifying death, is not a sign of giving up, it is a sign that you have lost all hope and that my friend, is the real tragedy here. I remember the feelings of losing hope and I wish I could tell you how to get it back, but I only know how to do it for me, however, I will share a couple of suggestions.

To begin, if your anxiety medications are not working, then it is time to see a psychiatrist and try something new. You cannot hope to sort yourself out, if the medications you need to remain somewhat stable, are no longer working for you. I change my psych meds every time they stop working, because I can control that aspect of my life. I see a therapist regularly, because is it what I need to do for me. I am also totally honest with my therapist and I demand that she challenge me, to sort through just what I feel, but more importantly, what I think I "feel". To me, therapy is not meant to be easy and I find that when it becomes the most difficult, is when I make the most progress.

I also stopped comparing the life I live, to the life I "thought" I would live, because then I would be allowing the past to dictate my future. Instead, I work at defining the life I want to live and just because I can no longer do some things, does not limit me in what I can do. For me, it's all about perspective and I believe you may be losing yours and I think you need to get it back. Please consider reevaluating your anxiety medications and possibly you need a more challenging therapist, or you need to ask to be pushed harder. Please understand I am not criticizing you, only offering some observations.

You are an incredibly strong person, but one I believe, who has simply lost hope. No matter what the afterlife may offer you, it saddens me to think, that you would not use that strength to attain the life that you deserve. Nobody can define who or what you are, only we can do that for ourselves. I think you need some help, in getting to a place where you can see the real you, because even if you don't feel it, there is always hope. You do not need to continue feeling like this and I urge you to get the help you need and so desperately want.

If you ever need to talk, feel free to PM me.
Life is what happens, when you are busy making other plans.

Though you may be only one person in the entire world, to one person, you may be the entire world.

I wish to become half the man, that my dog thinks I am.

Remember me with simple acts of kindness and I will live forever.

Offline bear60

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Re: At peace with my decision to stop taking meds.
« Reply #40 on: May 09, 2011, 02:40:25 PM »
Good comments Joe.
Basically it boils down to letting go of the past and accepting what you have today. I can say from experience that my life has been altered by HIV..... but HIV is not the only reason that my life will never be what I had "expected" it to be.
I had to let go of all my expectations, sometimes called "baggage".
Anti depressants have helped me cope.
Having a life partner has helped me lead a  more stable life.
Since the death of my Mom and Dad,  I have tried to forgive and get on with it.
Joel
Poz Bear Type in Philadelphia

Offline BJS2011

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Re: At peace with my decision to stop taking meds.
« Reply #41 on: May 12, 2011, 05:36:19 AM »
This isn't a "feel sorry for me" rant.  I am honestly curious about others who have decided that they no longer want to take their meds and are at peace about it.  For many of us, our lives are not what they used to be.  Mine has changed due to some cognitive impairment about 15 years ago, which lead to a loss of several clients, and work hasn't been the same.  It's caused some learning disabilities which hinders changing careers, not to mention the whole SSI/MediCal situation covering my medications.  Anything I would do would be in the realm of self-employment, because there aren't jobs with benefits in my field where I live, and relocating is cost prohibitive at this point. Not to mention, I'm not sure I could work 40 hours a week.  I'm 49, have C.O.P.D. and get tired easily.  Although I do try to walk and get some exercise on a regular basis.    
There are certainly bigger issues than this, however, my limited career choices, lack of cultural activities due to my community, and my less than optimum brain all contribute to a quality of life that is no longer worth living.  Does anyone else feel this way?  If so, have they decided to give up quantity of life for quality.  My sister is the only person I have told that I've quit taking my meds, she understands.  She has seen how much my life has changed.  My personality has gone from a gregarious, extrovert, life of the party, to a total introvert.  I've become almost agoraphobic.  Most of this is situational, but some is due to brain damage.  I'm not asking for advice, just would like to know others who might have chosen this same path.  

Thank you for reading my post.  Sorry if it is a downer for some.  For me, my decision gives me a lot of peace.  

HIV Positive 25+ years
CD4 375 (highest it's ever been while on meds.)
VL undetectable.
I have been noticing the past 6 months that my body and quality of life are just not so good. I am co infected with HEP C. I suffer such terrible fatigue and really have lost my zest fior life. I as well use to be a social butterfly and you couldn't keep me home. Now I leave to see doctors and get my methadone every week. I really hate how I feel.

Offline Ann

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Re: At peace with my decision to stop taking meds.
« Reply #42 on: May 12, 2011, 08:17:04 AM »
BJS,

I know you mean well, but as someone who was not diagnosed before 1996, you should not be posting in the LTS forum.

Please read this forum's Welcome Thread, which is stickied to the top of the LTS main index page.

Please also read some of the other sub-forum's welcome threads (not all sub-forums have them). If a forum has a welcome thread, it will be stickied to the top of that forum's main index page, just like in this forum.

Please do not post in the LTS forum again. Thank you very much for your cooperation, it is much appreciated. :)

Ann
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline sorryass

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Re: At peace with my decision to stop taking meds.
« Reply #43 on: July 13, 2011, 05:07:32 PM »
Brock;
It is now July, I hope you have seen your doctor, a counsellor or family and friends.  If you are still off your medication, you will have to see your doctor.  Most likly, a new class, or drug, will have to be prescribed for you.  The new ones are much easier to take.  Smaller, and less often.

Staying off your medictions can only harm you.  A very long, awful process.  Please, reconsider.  Each and every day scientist's around the world seach for a cure. Strangers, working dilligently to save our lives.  I hope you are here to applaud their efforts when the day comes that a cure is found.  Be well,

Bertram
Keeper of the gnomne!
Once a gardener,...............er!

*Ritonavir 100mg 2-Day
*Etravirine 100mg 2-Day
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*Prezista 600mg 2-Day

Offline EggMan

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Re: At peace with my decision to stop taking meds.
« Reply #44 on: July 20, 2011, 01:30:57 PM »
After reading this post and all replys I have to say I understand all sides, I think this goes deeper then what is said here:
I have been through ups and downs and its all part of life and yes this is a constant fight to survive in the best ways we know how to, I have moved and thought the grass is greener over there when actually when the new move wears off the problems are all the same as were before. 

Personally: I have been off meds for over 3 years, maybe not the same problems you have but thinking in the same reasons for going off my meds yet there has been hardly any changes in my health esp. with my CD4 and VL, yes my CD4 has dropped but not by much and VL has gone up but not as bad as one would think it would due to all the scares we have been told about if we do this or don't do that.
I get a different answer from every ID doctor I have been to about "what happens if" :o  There are some that care (very few) but most want to heard patients through like cattle and call it a day but finding a doc that can give you the best advise on doing this and monitoring your status through your decissions is the best for what ever you decide. 
You are in control right now but that could change so be aware of that,  just because you go off meds don't mean a quick death if that is what you are thinking, and if you have gone off meds you will be thinking "when" is something going to happen constantly. *** MORE ANXIETY 

Just keep in mind, right now you are in control.

Online leatherman

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Re: At peace with my decision to stop taking meds.
« Reply #45 on: July 20, 2011, 05:29:13 PM »
Just keep in mind, right now you are in control.
If I may ask, control of what exactly?

Only antiretrovirals control HIV and the viral load. Though there have been a few meds/supplements that may mildly affect cd4s, it's basically genetics that control a person's cd4 count (as long as HIV is no longer is destroying a person's immune system).

When a person is NOT on HAART, HIV is NOT under any control. That's just the science of it all. Saying that someone has some sort of control over CD4s or HIV, outside of retrovirals, is not correct.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline EggMan

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Re: At peace with my decision to stop taking meds.
« Reply #46 on: July 20, 2011, 06:15:52 PM »
OK, I never once said or indicated he was in control of HIV or any other medical issues, I said he is in control of his life.  making his own decisions and being able to live life as per the best he can.
 There has already been issues with his brain and there could be others as to hinder him from everything
that his life has to offer. he could be laying in a bed with 24/7 constant care or left in a shitty diaper for hours depending on who handles his health care.
My Point:  coming off the meds does not mean a person catches a cold and dies like they were doing back in the late 80s and early 90s.  A person can live on for years with someone wiping there butts daily and then leaving them alone in a hospital bed or be tied down to a bed due to other mentail issues....and so on. At that point they would be back on meds through a IV or stomach tube and be kept alive without any choice over there own self.

Online leatherman

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Re: At peace with my decision to stop taking meds.
« Reply #47 on: July 20, 2011, 07:02:06 PM »
OK, I never once said or indicated he was in control of HIV or any other medical issues, I said he is in control of his life. 
actually you talked about cd4 counts, viral loads and monitoring statuses which easily leads someone to wonder exactly what you implied the OP had control over. You made it sound like he could somehow control the state of his HIV infection by twice saying he was in control - when actually by going off meds he has given up control. You did not state that you were talking about control over the choices in his life. Although anyone is entitled to choose to NOT treat their HIV, they need to be warned that the choice of untreated HIV is a deadly choice and not a decision to be made lightly.

coming off the meds does not mean a person catches a cold and dies like they were doing back in the late 80s and early 90s.
that is not entirely correct. HIV is still the exact same terminal virus that it has always been. People will be dying today who were not treated, did not get onto treatment in time, or stopped their treatment allowing HIV to flourish. HIV has not mutated to some less-dangerous virus. Many people go off meds, have quickly rising viral loads, develop illnesses and pass away within a yr or two. However, I will grant you that other people are able to go several years. The outcome is very individual as it depends on how each person's body reacts when HIV begins to flourish.

Regardless of the timeline of being a few months or a few years after going off meds, HIV uncontrolled by antiretrovirals eventually leads to AIDS and then to death. Your doctors probably should have at least told you that death was the eventual overcome even if they couldn't tell you exactly when or how when you posed your "what if" to them.  ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Online leatherman

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Re: At peace with my decision to stop taking meds.
« Reply #48 on: July 20, 2011, 07:19:52 PM »
btw Eggman, I should explain that I'm only being a bit antaganositic towards your "in control" comments because as a new person in our forums, you came in talking about how you yourself have gone off of meds. Your first post and advice was to tell someone else who has gone off meds that their action (of stopping HAART) somehow put them in control of things.

We often have people, who don't believe in HAART, entering these forums putting forth the nonsense that HAART isn't needed or isn't the only thing that controls HIV. People who have been on treatment and gone off treatment are NOT controlling anything to do with HIV or their health and are eventually running the risk of death. So I felt I needed to point out that your suggestion that stopping HAART somehow puts someone in control just isn't the correct way to view this situation. It's actually abdicating control to the HIV - which can then take months to years to bring about death.

so though, we have gotten off on the wrong foot probably, let me say welcome to the forums, and I look forward to hearing more about you and your situation.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline Joe K

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Re: At peace with my decision to stop taking meds.
« Reply #49 on: July 20, 2011, 07:48:07 PM »
OK, I never once said or indicated he was in control of HIV or any other medical issues, I said he is in control of his life.  making his own decisions and being able to live life as per the best he can.
 There has already been issues with his brain and there could be others as to hinder him from everything
that his life has to offer. he could be laying in a bed with 24/7 constant care or left in a shitty diaper for hours depending on who handles his health care.
My Point:  coming off the meds does not mean a person catches a cold and dies like they were doing back in the late 80s and early 90s.  A person can live on for years with someone wiping there butts daily and then leaving them alone in a hospital bed or be tied down to a bed due to other mentail issues....and so on. At that point they would be back on meds through a IV or stomach tube and be kept alive without any choice over there own self.

Eggman, I understand what you are saying and control is the right word, because control references all aspects of living.  As much as I hate to see folks go off of meds, I understand that the ultimate decision is solely theirs and since we are not them, I think we need to respect whatever decision they make.  While I think it is part of our duty to remind folks of the danger of stopping meds, at some point, the warnings need to end and unconditional support needs to begin.  Just because we cannot conceive of valid reasons for stopping meds, does not make that a universal rule.  Sometimes providing support requires that we hold our tongues, because no matter what we may feel, the ultimate decision is not ours to make, nor ours to criticize.
Life is what happens, when you are busy making other plans.

Though you may be only one person in the entire world, to one person, you may be the entire world.

I wish to become half the man, that my dog thinks I am.

Remember me with simple acts of kindness and I will live forever.

 


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