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Author Topic: Quality or quanity  (Read 7688 times)

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Offline PozJeepGuy

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Quality or quanity
« on: August 03, 2011, 12:15:42 PM »
So I'm days away from my one year mark and the big question lately has been quality of life over quanity. I don't mean this in a depression matter. I read what alot of you have gone thew health wise or even going threw and I ask you all.  Is it worth it. Is it worth taking preventive measures to prolong your life.  Would you make the same decisions on treatment now that you know what you know?  I'm looking for honest answers. I can't discuss this topic with my friends or family because it upsets them too much.  I'm wondering if maybe it might just to better to live life as normal and burn out living life to it's fullest. I'm not depressed. This is just something I'm curious about.  Have you felt this way?  I look forward to your responses and as always thanks in advance   
Jacob Perry

I refuse to wear my HIV as a badge of shame any longer.

Offline LM

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Re: Quality or quanity
« Reply #1 on: August 03, 2011, 12:32:11 PM »
What stops you from having both?

Offline spacebarsux

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Re: Quality or quanity
« Reply #2 on: August 03, 2011, 12:36:13 PM »
I'm not depressed.    

This post suggests otherwise.
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline AlanBama

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Re: Quality or quanity
« Reply #3 on: August 03, 2011, 12:52:54 PM »
The things I regret are things I did (or didn't do) because of AIDS, not taking the medications for AIDS to keep myself going !  No regrets there....

Because I was constantly told it was a death sentence, and people were dying right and left, I did some things I regret -- sold my condo in ATL at a big loss, that I really never recovered from; left work on disability (which was a necessity, not a choice) but I DIDN'T go back to work for the State of GA when I had the opportunity, and I should have; would have over 25 yrs of service now.

My advice, is plan your life exactly as if HIV is NOT a factor.  Do what you would want to do anyway; don't let it stop you.  There is certainly no reason to, in 2011.

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 Joe K

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Re: Quality or quanity
« Reply #4 on: August 03, 2011, 12:54:23 PM »
Hey Jake,

I did what I did, to stay alive, because I matter and I am enough.  For most of us LTS, there were few choices in medications, as most of us simply tried to stay alive, waiting for the newest drug to be approved.  At one time, I took almost 50 pills per day in an effort to avoid being dead and in the end, that is the key.  What others do has no bearing on you, because they are not you.  The question I have always used, to guide myself in what I am willing to do is: "How much do I want to live?"  The answer it appears is that I want to live as long as I can, because like others, I have subjected myself to clinical trials and drug regimes that are not for the faint of heart.

I did all of this willingly because I want to live.  I have surrendered a great deal of quality of life, because I want to live.  I take antidepressants and anxiety medication and see a therapist to treat my mental illness, because I want to live.  I have learned that shit happens and you can either bemoan your lot in life, or persevere, because life is worth living.  I refuse to surrender to a virus, nor allow it to drain my soul.  No matter what happens to me, I refuse to quit, because I love my life.  I cannot imagine not having my husband, you folks here or the myriad of activities I do to keep spice in my life.

To be honest, I think you are asking the wrong question.  The question, that only you can answer is: "Do I believe I can have a long and fulfilling life in spite of HIV?"  I believe that all the rest will follow when you answer that question.

Offline Jeff G

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Re: Quality or quality
« Reply #5 on: August 03, 2011, 12:55:47 PM »
If you are asking if you should go back on treatment when or if your doctors advise it I say a big yes . Trust me you don't want to die of aids , it can be a long agonizing ordeal or something so quick there will be no time to change your mind and go back on your meds .

I stopped my meds once when I needed to be on them and soon enough I had no quality of life at all unless you are into infections and cancer .

This is one of those times when I am not sure if I should post at all . I am not trying to scare or be nasty so please don't take it that way . Some times we get to hear what we need to hear instead of what we want when we post in the forum . You have asked this same question in many different ways so its weighing heavy on you ... sounds like a recipe for depression to me , better to check it out and stop denying you have a problem .    
« Last Edit: August 03, 2011, 12:59:16 PM by jg1962 »

Offline Buckmark

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Re: Quality or quanity
« Reply #6 on: August 03, 2011, 01:09:00 PM »
So I'm days away from my one year mark and the big question lately has been quality of life over quanity. I don't mean this in a depression matter. I read what alot of you have gone thew health wise or even going threw and I ask you all.  Is it worth it. Is it worth taking preventive measures to prolong your life.  Would you make the same decisions on treatment now that you know what you know?  I'm looking for honest answers. I can't discuss this topic with my friends or family because it upsets them too much.  I'm wondering if maybe it might just to better to live life as normal and burn out living life to it's fullest. I'm not depressed. This is just something I'm curious about.  Have you felt this way?  I look forward to your responses and as always thanks in advance   

As a previous responder stated, why do you think you have to make a choice between these two?  I know that a few months ago you were struggling with the side-effects of the meds you were on, and felt better once you stopped taking them.  Are you at a point now where you have to consider taking meds again?  If so, there are so many choices of meds these days that you should be able to find one that minimizes side-effects, and your doctor should support you in this (otherwise, you need a new doctor).

Preventive measure (meds) can actualy help improve your quality of life.  Going without so you can "live life to the fullest" may not work out as you imagine, especially with the range of detrimental effects and diseases that HIV will cause if left unmanaged.  I'm concerned that your vision of short but fabulous life without preventive measures to control HIV is just a fantasy.  The reality of that will be very, very different and likely full of ugly diseases like PCP, MAC, CMV, KS (google "HIV opportunistic infections" to see the full range).

Perhaps you haven't come to a full acceptance that you have HIV, and what that means.  I urge you to do so.  You have HIV, and now you have the responsibility to manage it.  Not taking meds is one option, but to me it seems like sticking your head in the sand.  Life after HIV will not be the same as life before HIV, but I think you can manage to have a fulfilling life with HIV.

From my personal experience, are the meds worth it?  Hell yes!

Regards,

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

Offline wolfter

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Re: Quality or quanity
« Reply #7 on: August 03, 2011, 01:43:40 PM »
My very best friend since childhood and I probably got infected around the same time.  Developed AIDS around the same time and also started AZT together.  Kinda weird that we never had sex, but that's a different story.  Those drugs were horrid and I couldn't imagine taking them forever as the quality of life was definitely deminished.  He and I had this exact conversation many times.  Once our numbers improved, he decided to go off his meds and enjoy some quality life.  I totally understood but whole heartedly disagreed with him.  I chose to fight for myself and all those who loved me.  Now 16 years later I'm still convinced he made the worst decision of his short life.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline leatherman

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Re: Quality or quanity
« Reply #8 on: August 03, 2011, 01:47:59 PM »
Because of quality of life issues, I stopped meds 3 times over the course of living with AIDS for 20+ years. Of course that was in the mid to late 90's. My friends were dead. my partner was dead, and I was incredibly sick and near death. I decided that puking every day, along with a host of other side effects, was no quality of life and in that context, quantity meant little. Of course due to resistance issues and lack of any other meds even being on the market I really had no choice. I mean I stuck with the AZT for 9 months, just as I held out with the Sustiva for 9 months too. Lucky for me, by the time (6 months after stopping those meds) I ended up in the hospital each time, something new had finally reached the market. I jumped on those new meds too. It's not like I wanted to die or to even stop meds; but there was only a limited amount of meds back then.

Needless to say none of that makes a bit of difference nowadays. There are so many HIV meds on the market and so many combos to try, NONE of the issues I had debating "quantity vs quality" even exists these days. If one combo doesn't work, today it takes a simple discussion with the doctor to switch to something else.

That's how I came out of it. I found another doctor - one that was willing to work with me. I mean, dealing for months with each of those "bad" combos, I was willing to do my part in trying the meds, I just needed someone to encourage me and to work with me to prescribe alternative meds until we found a regimen that kept me undetectable and not puking. It was quite a chore though as it took a decade to get undetectable and 15 yrs of meds before I quit puking.

Would I go through it all again? Hell yes! If I had not dealt with those miserable meds and side effects I wouldn't have lived long enough to fall in love again and live with my second partner for 10 wonderful years. Although he passed away, because I got onto the "right" meds, I'm still here, still alive and kicking, and still pushing forward with my life. I'm glad of that too, because I've been dating again, and am starting to wonder if I can possibly be lucky enough to have love again for a third time. Oh I don't want to jinx it; but after staying alive long enough to fall in love a second time, I am now much more optimistic and receptive to thinking love could even happen a third time.

You obviously need to work with a doctor to get onto a combo that doesn't affect you so adversely. I'm not saying that'll be an easy chore - it took me 17 yrs to get onto the right combo and finally have it working right; but without the right meds, you'll stay depressed and stay sick. Without any meds, you'll end up very sick and eventually dead.

chose life, love, and a future rather that death. It's less painful and a lot more fun.  :D
leatherman (aka mIkIE)


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

Offline thunter34

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Re: Quality or quanity
« Reply #9 on: August 03, 2011, 02:01:49 PM »
Get back with me about your quality of life once those opportunistic infections kick in.
AIDS isn't for sissies.

Offline wolfter

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Re: Quality or quanity
« Reply #10 on: August 03, 2011, 02:07:00 PM »
Get back with me about your quality of life once those opportunistic infections kick in.

Time to change your signature.  Just under 2 weeks now 8)
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline PozJeepGuy

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Re: Quality or quanity
« Reply #11 on: August 03, 2011, 02:29:41 PM »
I talked about this with my counselor today. It's just something that has been stuck in my head.  Honestly not depressed.  Things are actually going pretty well lately. I was... Am curious of what those who have had it for years and years thought. Not giving up, not feeling sad just a general curiousness. I won't lie and say I don't want to feel those horrible side effects again but as some one said it took 17 years to find the right regiment and I have heard others say it has taken years to find to find  the right ones. I mentally don't know if I want to deal with that.   I go back to the doc in a week and preparing myself to hear  it's time to start up again and honestly to my core of my being I feel fine and really not interested in treating it right now.   it's weird knowing you have something but not feeling sick persay.  Counselor told me today she hears this a lot so I know in not the only one who thinks this way. Once again not depressed just trying to decide what is the next step. 
Jacob Perry

I refuse to wear my HIV as a badge of shame any longer.

Offline NycJoe

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Re: Quality or quanity
« Reply #12 on: August 03, 2011, 02:54:08 PM »
I'm with Joe.  Give me as many pills as it takes.  It may suck taking them and affording them but I will choose life every time.  Unless of course I was in incredible pain with no hope.  I get that from my grandmother.  When she was 99 she would have taken anything to keep going despite health issues.  She would be pissed to know she died 6 weeks shy of 100.

Offline mecch

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Re: Quality or quanity
« Reply #13 on: August 03, 2011, 03:14:53 PM »
Let's make it clear to all readers of this thread.  OP is on a supervised treatment interuption because the side effects were heavy for him.  And it's just been a little time.  And his numbers are fine.

OP - aren't you jumping the gun a bit much, worrying about dying and how long you have off treatment? 

You post these very pessimistic and darkish thoughts and deny being depressed but there is something a bit askew with your will to live.   My two cents.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline AlanBama

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Re: Quality or quanity
« Reply #14 on: August 03, 2011, 03:39:10 PM »
Let's make it clear to all readers of this thread.  OP is on a supervised treatment interuption because the side effects were heavy for him.  And it's just been a little time.  And his numbers are fine.

I think all of us who responded are aware of this.....
"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 newt

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Re: Quality or quanity
« Reply #15 on: August 03, 2011, 04:18:25 PM »
Both, with no side effects from the meds , this might be a stretch but is possible. And if it ain't working this way some drug company researchers is gonna get their ass kicked, cos this is how treatment gets better, by people kicking ass (for selfish reasons among other things).

I have given up not talking about HIV to people if I need (which is not that often but I do). If they don't like it they can fuck off. Know me now, know my virus. I have to and am happy to listen to hours of stuff about their dad's heart, their own cancer, their kid's eczema, it's not different.

I am not a lesser person cos I'm HIV-positive. My life is just as valid, and I hope just as long as.

- matt (defiant) the newt

Now playing: Ben Taylor, Island (original demo MP3 version)
"The object is to be a well patient, not a good patient"

Offline PozJeepGuy

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Re: Quality or quanity
« Reply #16 on: August 03, 2011, 05:20:21 PM »
Your right that I ask my darker questions here. When I approach my family and friends it scares them and makes them worry. I find by just sharing what's on my mind it makes it easier to deal including abstract thoughts like this one
Jacob Perry

I refuse to wear my HIV as a badge of shame any longer.

Offline leatherman

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Re: Quality or quanity
« Reply #17 on: August 03, 2011, 06:03:48 PM »
but as some one said it took 17 years to find the right regiment and I have heard others say it has taken years to find to find  the right ones. I mentally don't know if I want to deal with that. 
you obviously missed the most important part when I said that the 17 yrs was worth it.

ALL of my old friends and previous partners are dead. That means not only do they have no impact in the world anymore but they don't enjoy the world anymore either. On the other hand, I'm now so well and healthy (thanks to the more current meds) that I can talk about the the past when I was sick (and the meds weren't as "good") and tell someone like you that it was worth going through to be alive and healthy now.

but maybe that wasn't what you wanted to hear (or read). ;) No one here (or in those other threads) has told you that going off meds, staying off meds, or not dealing with the side effects was the way to go. Everyone told you that dealing with the side effects and sticking to the meds was worth it to them. Of course, the people that didn't deal with the meds are kinda telling you their story too. Look at the obit Wolfie posted. That's someone telling you that not dealing with the meds left them dead and unable to personally share their story with you.

honestly to my core of my being I feel fine and really not interested in treating it right now.   it's weird knowing you have something but not feeling sick persay.  Counselor told me today she hears this a lot so I know in not the only one who thinks this way.
I know plenty of people who said they felt great (like Etay, a former member, just last year; and my late partner Jim, back in 08) and were dead just a couple months later because of long term untreated HIV. They just prove that plenty of people seem to "feel great" (even when their immune system is destroyed) but can actually be quite sick and very near death. How you "feel" with untreated HIV doesn't really count for much since your immune system isn't working properly and letting you know how sick you really are.

OP is on a supervised treatment interuption because the side effects were heavy for him.  And it's just been a little time.  And his numbers are fine.
Mecch, I understand the OP isn't anyway near as ill as someone like Etay or Jim was; however, I believe the OP's darker thoughts can eventually lead him to that point, if he doesn't get a handle on his fears and get a handle on finding the right regimen. Many of us have known people that waited too long and weren't able to pull out of the downward spiral at the end. Leaving HIV untreated too long doesn't always just lead to death as it can also lead to long-term issues, less than optimal recovery, and/or future health problems.

just trying to decide what is the next step. 
my suggestion is still to work with a doctor to find the right regimen to combat the HIV, and leave little or no side effects.
leatherman (aka mIkIE)


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

Offline Joe K

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Re: Quality or quanity
« Reply #18 on: August 03, 2011, 07:15:23 PM »
Jake, you need to stop deluding yourself, that you are somehow in control of you life, because you are not. You are so consumed by fear of HIV, that you are unable to think straight.  I have held my tongue, but I cannot, in good conscience, let this fallacy continue.  Jake, you are suffering from some form of mental illness and it does not appear that you are having much success with therapy alone.  You are no closer to accepting your infection and your frequent posts here are merely attempts to find justification for your fear of taking medications, or actually having to be responsible for your own existence.

Against overwhelming testimonies, by multiple members, you refuse to accept that you can live with HIV, because you are so damn afraid.  Afraid of what?  I do not know, but the sooner you learn that life owes you nothing, the sooner you will adjust to being poz.  Living with HIV is not for the faint of heart, nor is it a spectator sport.  If you refuse to accept and embrace your infection, there is nothing that anyone can ever say to you, to convince you that life is worth living.

You seem resigned to live a life full of fear of the unknown and you have no one to blame but yourself.  I'm sorry if my words cut deeply, but you need a wake up call.  The facts regarding HIV have not changed and only by treating your infection, will you be able to live the life that you choose.  But it you are so damn afraid of your own shadow, so anxious over unknowns, you will never, ever find the peace that you seek.

You don't need our permission to throw away your life.  However, think long and hard about what life can be like, in spite of HIV, before you throw it all away.  In cases like yours, there are no second chances.
« Last Edit: August 03, 2011, 07:20:19 PM by killfoile »

Offline PozJeepGuy

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Re: Quality or quanity
« Reply #19 on: August 03, 2011, 08:10:33 PM »
Killofie thanks for taking the time to write all that but you couldn't be further from the truth.  I'm not scared.  I'm truly at a point I really don't care.  Honestly. The point I'm at is trying to get one step ahead of  feeling out future possibilities. I'm not depressed, I am really curious does anyone think this way. I'm taking it the answer is no. That's cool.  I know people who have been positive 20 years and still don't take meds.  I am really finding peace in the thought of just letting this run it's course and what happens happens. I ask these questions to see what other feel. Not always the scentic answer. Of course I know that stopping meds will speed up the chance of illness. With that said I just don't know in my heart if it's really worth the fight. Straight up there it is.
Jacob Perry

I refuse to wear my HIV as a badge of shame any longer.

Offline newt

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Re: Quality or quanity
« Reply #20 on: August 03, 2011, 08:42:27 PM »
Is it worth the fight? Yes. Life is wonderful.

There are many things that make you think otherwise, many dark corners, HIV or no. This is part of the wonder.

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

Offline buginme2

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Re: Quality or quanity
« Reply #21 on: August 03, 2011, 08:52:01 PM »
Killofie thanks for taking the time to write all that but you couldn't be further from the truth.  I'm not scared.  I'm truly at a point I really don't care.  Honestly. The point I'm at is trying to get one step ahead of  feeling out future possibilities. I'm not depressed, I am really curious does anyone think this way. I'm taking it the answer is no. That's cool.  I know people who have been positive 20 years and still don't take meds.  I am really finding peace in the thought of just letting this run it's course and what happens happens. I ask these questions to see what other feel. Not always the scentic answer. Of course I know that stopping meds will speed up the chance of illness. With that said I just don't know in my heart if it's really worth the fight. Straight up there it is.

Wow Jake, that posting really made me sad when I read it.  It sounds like youve given up.  I hope I just read it wrong. I hope you dont let this prevent you in at least trying a new medication regimen.  I would hate for you to make this decision without at least trying some different meds that may work really well with you.  But theres only one way to find out and thats to try it out.

Offline leatherman

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Re: Quality or quanity
« Reply #22 on: August 03, 2011, 08:55:26 PM »
Of course I know that stopping meds will speed up the chance of illness.
that is incorrect. stopping meds will allow HIV to take it's own course with your immune system. nothing will be sped up. However, death is the result of long term untreated HIV

I know people who have been positive 20 years and still don't take meds.
there are few longterm non-progressors in this world. Seriously, I doubt you know few, if any. And with the way your situation has already progressed (that you went onto meds once) you are NOT a LTNP and should not base your treatment their results.

I just don't know in my heart if it's really worth the fight.
kindly I must say that you need to seek counseling.
leatherman (aka mIkIE)


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

Offline Joe K

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Re: Quality or quanity
« Reply #23 on: August 03, 2011, 09:11:03 PM »
Of course I know that stopping meds will speed up the chance of illness. With that said I just don't know in my heart if it's really worth the fight. Straight up there it is.

Jake, now I understand your plight.  You have lost all hope, for whatever reason and there is nothing that any of us can do to help you.

Offline phildinftlaudy

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Re: Quality or quanity
« Reply #24 on: August 03, 2011, 09:25:57 PM »
Jake:

I agree with Joe...
and my words may fall on deaf ears -
but you say that you don't know if its really worth the fight --- well, I have a NEWS FLASH for you - life is inevitably about "fighting."  We fight to find love; we fight to find and keep jobs; we fight to finish school; we fight to get over colds, flus, hangovers... we fight having to pay high taxes; we fight having to pay high prices; many of us fight injustice, fight intolerance, fight ignorance, we fight for understanding... shit, a whole slogan and movement was built to "fight the power."  HIV can be a fight - but, it doesn't have to be much different than other fights we go through in life.

This is why I think your issue goes much deeper than HIV ----- take HIV out of the picture and basically what you are saying is that you don't have the fight left in you period.  This is a classic sign of depression - and guess what, treating depression is also a fight - but it is a win-able one - just like HIV.  But, you have to find at least the smallest, tiniest bit of willingness in you to equip yourself to win the fight.  I suggest you seek assistance from your closest behavioral/mental health faciility (follow their guidance - counseling, mental health medication for depression, if prescribed, etc.) ---- You may even want to see if short-term, inpatient care is available.

Because while life is about "fights" - it is worth these fights once you are able to view it in a better perspective.  Ultimately, the choice is yours - but, remember, while you may think that you are gaining control by giving up the fight - you are actually very much relinquishing it. 
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline Robert

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Re: Quality or quanity
« Reply #25 on: August 03, 2011, 09:28:20 PM »
Joe

I don't think jake has lost all hope .  Not at all.  I think he is still holding out for a thread of hope that will get him through that tangled web he's managed to get himself lost in.
..........

Offline thunter34

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Re: Quality or quanity
« Reply #26 on: August 03, 2011, 09:43:07 PM »
Ya know....you could be facing a health situation where there really IS no recourse.


Say....cancer, for example.  Yeah...you could be someone facing that with no other options left.  Or you could be one of untold thousands currrently facing famine and starvation.

But no...you are just hand wringing (still) about a health situation where you have many, many very good options available.

I personally think you need to snap out of it, realize the good fortune that is still present in you life and get the hell on with lving.

But that's just me. 
AIDS isn't for sissies.

Offline anniebc

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Re: Quality or quanity
« Reply #27 on: August 03, 2011, 09:47:24 PM »
Ya know....you could be facing a health situation where there really IS no recourse.


Say....cancer, for example.  Yeah...you could be someone facing that with no other options left.  Or you could be one of untold thousands currrently facing famine and starvation.

But no...you are just hand wringing (still) about a health situation where you have many, many very good options available.

I personally think you need to snap out of it, realize the good fortune that is still present in you life and get the hell on with lving.

But that's just me. 


Well said Tim..sorry poz but I agree with Tim.

Aroha
Jan
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline PozJeepGuy

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Re: Quality or quanity
« Reply #28 on: August 03, 2011, 10:43:55 PM »
Im not giving up I'm not wanting to fight I have just reached a place of blissful numbness.  It's better than feeling sad or depressed. Some made a great observation, take HIV out of it and I just don't care. It's a day by day kinda life and has been now for the last year.   Comments like the are starving children and crap like that has no effect what so ever. I was just wanting to share and see if anyone else has ever been at this point. That's all. Thanks again for the responses
Jacob Perry

I refuse to wear my HIV as a badge of shame any longer.

Offline David_CA

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Re: Quality or quanity
« Reply #29 on: August 03, 2011, 11:22:15 PM »
<snip>Of course I know that stopping meds will speed up the chance of illness. With that said I just don't know in my heart if it's really worth the fight. Straight up there it is.

For me, it's definitely 'worth the fight'.  Why would I want to put my husband, family, friends, or me through the crap that I'd most certainly face if I didn't fight.  I like being healthy.  I like life.  Had I not gone to the hospital when I did, back in Nov. 2006, I'd likely be dead.  Yep, severe PCP pneumonia (before starting meds) is what almost did me in.  Maybe those of us who've come a bit closer to death treat this with a bit more respect.  I don't mind taking meds; I do mind the fact that I've got shitty lungs now as a result of NOT taking them... and fighting the fight.
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline Joe K

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Re: Quality or quanity
« Reply #30 on: August 04, 2011, 12:02:19 AM »
I was just wanting to share and see if anyone else has ever been at this point.

Yes Jake, I have been to the point you are and I found myself sitting on my bed, with a loaded gun in my mouth.  You can delude yourself, but you cannot fool me.  I have lived with depression for decades and every single thing you do and say are signs of extreme depression.  You know that you have reached the very bottom of an almost endless pit, when you claim that you simply no longer feel.  You have been so fearful of HIV and the medications that your senses have overloaded to the point that you can no longer feel.  Think about that Jake.  You can no longer feel and you don't think that should concern you?

My wish for you is that someone you know, will read this post and get you the help you so desperately need.  Jake, I fear for your safety, because you have lost the ability to reason.  You have convinced yourself that there is only one option for you, letting nature take its course and that is so wrong, on so many levels.  If you won't do this for you, maybe you will do this for those who love you.  Because I can assure you, that if you don't get some serious help, eventually, someone who loves you dearly, will find you dead.

Is that what you really want?

Offline Since2005

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Re: Quality or quanity
« Reply #31 on: August 04, 2011, 12:58:20 AM »
Yes Jake. I am like you. Or should I say I was like you. I have thought all these years taking meds is such a big commitment. I am so surprised at myself knowing I think different now and taking meds 'may be' is worth taking. I have been HIV+ over 6 and 1/2 years and never been to any doc or been on any meds since I found out I was poz. I am feeling fine and I was fine until recently when I saw some body rash started to show up. I thought of myself would I be rather dealing with this or take meds and try to live a healthy life. All these years, I have thought that I would not commit to anything life long like meds as I hate to be dependent on something. You would be surprised how my mind has been changing in a couple of weeks. So, one thing I could assure you that what your feeling today 'if its worth fighting for' that could change drastically. Though, I am with you as you have started this thread. It is good to let this 'thoughts' out than to keep it to yourself. I may be or am one of the ‘HIV denial' person but sometimes I wonder also life without meds could also be an option. Hell it is if that is actually an option. Just ask yourself is it an option for you? If it is take it but if it is not then think about the rash, disease that may come along with your quality of life. I have been thinking of these myself lately. I have been good without meds for so long. Question is how long is how long and how long is it for you? I could assure you buddy the way you are thinking, it could change anytime if you want to think a little 'deeper'. Bring this topic up again and again it will help you as you are able to at least let this 'thoughts' out here. I don’t think you are depressed and I agree that you are thinking out side of the box. Only thing I know what you are thinking now, you may not think the same later. Would it be too late then? Same goes for me also.. keep it in their buddy. It is your life do whatever you want to do with it but think it through and you would be surprised how your thinking process  could change in a very short period of time. My heart goes out to you thinking how much you have been dealing with the side effects and you are at a boiling point and its okay to think what you are thinking but I won’t be surprised if you think the other way around  ( living life) soon also and I could only hope you do…

I wanted to edit this to make it clear that once I start going to doc then if he/she suggests me to take meds to tackle the virus, I probaly will say 'yes' if thats what I have to do to avoid being sick..
« Last Edit: August 04, 2011, 02:02:32 AM by Since2005 »

Offline PozJeepGuy

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Re: Quality or quanity
« Reply #32 on: August 04, 2011, 01:29:24 AM »
Thank you since. I think you actually see where I am coming from.  Kilfor man we are on two completely different pages. I thank you for sharing.   This is really just posing a question to see if others have or do feel this way. When I say I don't care it's a real feeling.  I am the kind of person that if I don't have a clear cut direction I won't do anything at all til I know what to do. Once again thank you all for your time and sharing all that you have.
Jacob Perry

I refuse to wear my HIV as a badge of shame any longer.

Offline mecch

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Re: Quality or quanity
« Reply #33 on: August 04, 2011, 05:47:42 AM »
Im not giving up I'm not wanting to fight I have just reached a place of blissful numbness.  It's better than feeling sad or depressed. Some made a great observation, take HIV out of it and I just don't care. It's a day by day kinda life and has been now for the last year.   Comments like the are starving children and crap like that has no effect what so ever. I was just wanting to share and see if anyone else has ever been at this point. That's all. Thanks again for the responses

I do suggest you went numb in order to cope with your fear sadness anger and perceived powerlessness.  Numb is not bliss.  You could please print out this thread and take it to a mental health counselor and get help. There is something out of whack with your will to live and while passive suicide is human and anyones right, it's not normal really. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline bocker3

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Re: Quality or quanity
« Reply #34 on: August 04, 2011, 07:46:06 AM »
I'm wondering if maybe it might just to better to live life as normal and burn out living life to it's fullest. I'm not depressed.

First, yes -- I think live is worth living -- with both quality and quantity.

Second -- you can NOT live life as "normal" -- you are infected with HIV and if you don't treat it (at some point), it will kill you.  You have a "new normal" now -- living with HIV, by taking control of it or letting it kill you.

Third -- while you can not see it -- everyone else can.  YOU ARE DEPRESSED.  Why do you think your family and friends get upset when you discuss this topic?  Why are all the members of this forum trying to help you see the light here?  Why is everyone else wrong but you in this regard???  Because you are depressed, need help, refuse to acknowledge it and dismiss EVERYONE ELSE'S CONCERNS.

I wish you all the best -- but you need to trust in the larger groupthink here -- it is dangerous to listen to a depressed mind -- it will lead down a path that only causes anguish -- to you and/or all those who love and care for you.

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline thunter34

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Re: Quality or quanity
« Reply #35 on: August 04, 2011, 10:42:37 AM »
  Comments like the are starving children and crap like that has no effect what so ever.

Perhaps not for you, dear - but they certainly do for me.  One can only listen to the whining so long, ya know.


(And I agree with Joe...."numb" doesn't pass for "good" by any stretch.)


« Last Edit: August 04, 2011, 10:44:47 AM by thunter34 »
AIDS isn't for sissies.

Offline thunter34

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Re: Quality or quanity
« Reply #36 on: August 04, 2011, 10:53:44 AM »
I suppose I should withdraw from this thread with some apologies.  It just strikes me in a very visceral way when I consider how many people would give anything for access to these meds - and here's this guy carrying on about "is it even worth it to take them if the time comes".

Especially when I know right down to my core that at the first sign of the shit hitting the fan, he'll be swallowing them like tic-tacs.


So anyway...sorry if I've come off less nurturing than you'd like.  I'll bail now.

AIDS isn't for sissies.

Offline Joe K

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Re: Quality or quanity
« Reply #37 on: August 04, 2011, 11:21:14 AM »
Kilfor man we are on two completely different pages.

Jake, you are right we are one two completely different pages.  Although both of our pages are bound in the same book, the book of depression, with the difference being I am being treated and you are not.

I am also done here.  I cannot offer help to someone who refuses to consider any opinion but his own.

Offline leatherman

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Re: Quality or quanity
« Reply #38 on: August 04, 2011, 11:37:18 AM »
...how many people would give anything for access to these meds....
excellent point ;)
leatherman (aka mIkIE)


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

Offline geobee

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Re: Quality or quanity
« Reply #39 on: August 04, 2011, 12:46:33 PM »
Jake --

Having read your posts, I would urge you to keep "following your nose".  Keep doing as many things that you like.  Today.  The more you fall back in love with your life again, the more you'll entertain entering back into a regimen of self-care.  I'd advise you to do the tiniest things -- pet your cat, go on a hike, have a date with a cute guy -- whatever.  Small steps. Gradually you'll want to tackle the big things.  And you'll want to be healthy for that.

Also, what may happen 20 years from now doesn't really matter.  For me, fearing the future numbs me to the present.  Do the best you can with what you have, with the time you have, where you are right now.

Taking meds is my daily reminder of a lousy (and addicted) part of my life.  And makes me grateful for all the LTS (and people who died) whose shoulders I get to stand on top of.  And grateful for the next sunrise.  Hang in there.  George
« Last Edit: August 04, 2011, 01:00:48 PM by geobee »

Offline Miss Philicia

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Re: Quality or quanity
« Reply #40 on: August 04, 2011, 01:00:45 PM »
They're just pills -- some of you act like you're having to inject yourself every hour on the hour with a syringe. Not to mention most of you get to feast on the one-pill-a-day and still find a way to whine. Seriously, grow a pair.
"I’ve slept with enough men to know that I’m not gay"

Offline worried100

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Re: Quality or quanity
« Reply #41 on: August 04, 2011, 01:20:32 PM »
Perhaps not for you, dear - but they certainly do for me.  

I agree with this, when mum or i are feeling low i always remember there is always someone worse off than me.

What would it be like to be told we have 3 months left to live, like cancer patients are sometimes told?? At least we have the meds to help us through and give us hope and maybe keep us alive until the hopeful cure comes about. :o
 
Life is so precious.  ;)

Offline PozJeepGuy

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Re: Quality or quanity
« Reply #42 on: August 04, 2011, 01:24:11 PM »
I don't even know where to begin.  I went from asking an question to now I'm in denial, thinking is killing myself, and so forth and so on.  Almost everyone one got off topic again and became professional doctors wanting to diagnose me. Being numb about ones life really isn't a bad thing.  I see what going on I just don't know which route to take.  So doing nothing until I know which direction I want to go. I know we give advice based on or personal experience. But I'm not you. I ask a really simple question. Do you believe in quality or quanity of life. It was one of my Edward Poe moments to honestly just see what people thought.  Not my note that I leave behind.  And of course there the jabs that people have to make like he'll be the first taking fist full of pills, I can't be apart of this thread, or people are dying because they don't have access to pills. This went from a discussion to a mob. Yes I am lost in life right now and it sucks having no direction. With that said I'm not depressed  lost. Big difference

Thank you to newt, since, the buff guy with the bike ( I can't remember your screen name sorry) for talking to me and not down at me. Shit, it feels like being in a hole in the wall gay bar with all the drama. Why is it so bad to throw questions out and see what people say. I thought (and maybe I'm wrong here) that this is the place to ask questions. Stop reading between the lines and just give a opinion based on the original topic.

I know some of you care and for that I am truly grateful.  

Thanks
Jake
Jacob Perry

I refuse to wear my HIV as a badge of shame any longer.

Offline Buckmark

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Re: Quality or quanity
« Reply #43 on: August 04, 2011, 01:59:08 PM »
...
Why is it so bad to throw questions out and see what people say. I thought (and maybe I'm wrong here) that this is the place to ask questions.
...

This is the place the ask questions, and get opinions and answers.   But you have to realize that you may not agree with all of them.

Quote
Stop reading between the lines and just give a opinion based on the original topic.

People did give their opinion, based on the information you provided.

Quote
I know some of you care and for that I am truly grateful. 

A lot of people here really do care.

Regards,

Henry

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

Offline thunter34

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Re: Quality or quanity
« Reply #44 on: August 04, 2011, 02:00:59 PM »
I don't even know where to begin.  I went from asking an question to now I'm in denial, thinking is killing myself, and so forth and so on.  Almost everyone one got off topic again and became professional doctors wanting to diagnose me. Being numb about ones life really isn't a bad thing.  I see what going on I just don't know which route to take.  So doing nothing until I know which direction I want to go. I know we give advice based on or personal experience. But I'm not you. I ask a really simple question. Do you believe in quality or quanity of life. It was one of my Edward Poe moments to honestly just see what people thought.  Not my note that I leave behind.  And of course there the jabs that people have to make like he'll be the first taking fist full of pills, I can't be apart of this thread, or people are dying because they don't have access to pills. This went from a discussion to a mob. Yes I am lost in life right now and it sucks having no direction. With that said I'm not depressed  lost. Big difference

Thank you to newt, since, the buff guy with the bike ( I can't remember your screen name sorry) for talking to me and not down at me. Shit, it feels like being in a hole in the wall gay bar with all the drama. Why is it so bad to throw questions out and see what people say. I thought (and maybe I'm wrong here) that this is the place to ask questions. Stop reading between the lines and just give a opinion based on the original topic.

I know some of you care and for that I am truly grateful.  

Thanks
Jake

So you're what, hon?  Comfortably numb?  Sounds like a song.  

So an opinon based on the original topic?  Fine....quality of life.  And that begins with stopping moping about your situation, accepting it as it is and getting a move on.  I don't believe for one second that you don't know what directon to take.  You monitor your health while your numbers are good, and then take the meds when they aren't.  Pretty simple.    For one thing, anyone that stays in the sort of twist you've been in for an entire year now simply doesn't have the fortitude to really stare death down in the face, so stop trying to act like you do.  We all know better.

It isn't just that people who give answers you immediately like who care.

Being numb to your own life is neither normal nor good.  This is the place to ask questions.  It's also the place to accept that you are going to get a variety of honest answers.
AIDS isn't for sissies.

Offline Joe K

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Re: Quality or quanity
« Reply #45 on: August 04, 2011, 02:10:22 PM »
I ask a really simple question. Do you believe in quality or quanity of life.

Jake, while you may ask a "simple" question, there are no "simple" answers.  If you wanted an unbiased answer, maybe you should have asked that none of your known history be considered in answering it, but you did not.  When I reply to your posts, I'm not talking down to you, rather I feel like I am talking at you, because you refuse to consider anything I suggest.  My concern centers on how you describe your feelings and that causes me great concern.  Therefore I will make one last appeal.

I ask you to consider that you may have other medical issues, whether related to HIV or not.  We know that HIV can affect various parts of the body and might it be possible that something else is a happening with you? The only reason I express concern is that I want you to be as healthy as can be, so you have a clear head when you make any major decisions.  I read your words, through decades of depression and in my opinion you appear to be lacking in emotions and attacking others, maybe because you fear the truth in some of the comments.  But I am not here to judge you and all I ask is that you do all that you can, to be well in mind, spirit and body.

I also ask you to consider that I wouldn't be taking so much time, sharing my views, if I didn't care for you.  It really hurts when you insinuate some other motive for my sharing my concern and experience, other than the simple desire to help you.

Offline AlanBama

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Re: Quality or quanity
« Reply #46 on: August 04, 2011, 03:20:45 PM »
Let's keep it simple:  I choose quality over quanitity.

With that said, what is the 'quality of life' issue?  Taking a pill a day?  Managing some side effects?  The kind of AIDS 'quality of life' issues we're (LTS folks) talking about are the ones like not being able to walk, or not being able to see, or bathe or dress one's self.....

So aren't you glad you don't have to choose?   You can have both.
"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 HollyStar

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Re: Quality or quanity
« Reply #47 on: August 04, 2011, 03:23:07 PM »
Well, I have to say that I agree with a lot of of what the other members have had to say. I do also remember the early days of my diagnosis and know that some weird and sometimes morbid shit swirls in our heads.

My BF was diagnosed first with AIDS, HEPC and TB. He was at deaths door and I needed hope for myself and my BF that he could make it through. So I researched all I could, found this place and found hope for my BF that he would survive. For some reason though, when it came to my medical treatment, I had less hope for myself. I was terrified of the meds. I didn't take into consideration all the good qualities of the meds. All I could think about were potential side-effects and how I might feel like shit all the time and on and on and on! I started my first combo and fucking hated it! It drove me crazy and I dreaded having to take the next pill. So, I switched and it's the best thing I ever did. I have a combo that makes me feel good and taking the pills is just part of my routine, no big deal for me anymore.

I think back on how scared I was that I would lose my quality of life when I started the meds. I feel kinda stupid really. I mean, seriously, people freak out about something that will save their lives. But fear is also a normal emotion, to an extent. At some point, you have to decide that you want to live and not making a decision is still making a decision in some cases.

So, I guess to answer your original question, I believe in quality AND quantity of LIFE. To me, there is no reason I can't have both. I hope you can come to terms with your virus, as that is all it is, and take your meds when the times comes. Just remember, there are many options we get to choose from now. Simply amazing!
Diagnosed  July 28th 2003

'I don't want to get to the end of my life and find that I just lived the length of it. I want to have lived the width of it as well.' -Diande Ackerman

'Why not go out on a limb? Isn't that where the fruit is?' -Frank Scully

'If your ship doesn't come, swim out to it.' - Jonathan Winters

Offline phildinftlaudy

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Re: Quality or quanity
« Reply #48 on: August 04, 2011, 03:32:43 PM »
So I'm days away from my one year mark and the big question lately has been quality of life over quanity. I don't mean this in a depression matter. I read what alot of you have gone thew health wise or even going threw and I ask you all.  Is it worth it. YES, IT IS WORTH IT. Is it worth taking preventive measures to prolong your life.  YES, AS LONG AS MY LIFE HAS QUALITY - AND QUALITY IS HOW I DEFINE IT FOR MYSELF. Would you make the same decisions on treatment now that you know what you know?  YES, I WOULD MAKE THE EXACT SAME DECISIONS. I'm looking for honest answers. I can't discuss this topic with my friends or family because it upsets them too much.  I'm wondering if maybe it might just to better to live life as normal and burn out living life to it's fullest. I DOUBT I WOULD BE ABLE TO LIVE LIFE NORMAL AND TO ITS FULLEST IF I DIDN'T GO ON MEDS AND STARTED GETTING OIs.  I'm not depressed. This is just something I'm curious about.  Have you felt this way?  I ONLY FELT THAT WAY FOR A BRIEF MOMENT - AFTER MY FATHER DIED - BUT THAT WAS BECAUSE I HAD A MOMENT OF SITUATIONAL DEPRESSION GOING ON - IT HAD NOTHING TO DO WITH ME LOOKING FOR QUALITY OR QUANTITY - IT HAD EVERYTHING TO DO WITH BEING DEPRESSED ABOUT MY DAD'S PASSING.  I look forward to your responses and as always thanks in advance   


My responses to your question(s) are in bold, caps, and underlined above. Simple answers. You said you were "looking for honest answers." You also said you were looking "forward to your responses..."
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline PozJeepGuy

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Re: Quality or quanity
« Reply #49 on: August 04, 2011, 03:50:58 PM »
Yes, this is how I wanted this conversation to go. Too the point and honest responses. Thank you.  I took my pills everyday just like I was suppose too. I don't have a problem taking pills I have a problem with the side effects. In the future yes I will take another regiment but my first experience was not bad it was horrible. Getting to the point I couldn't eat, walk, or think straight. I know not all them will be that way. I do know that. It was and still is just a question I never thought of before. I do go and get con souling, I do go to the doctor regularly, and I do want to have a long happy and productive life.  Right now I'm still questioning alot of thing and feeling people out on all types of different issues. I guess I do need to apologize because I do post more what of type questions and vent here. I am learning I need to post the good things as well. I thought I had. My friends, family, and work have all been great.

Once again based on my personal experience meds are horrible.  Eight months of just being sick and in pain has really turned me off to pills for the time being. I keep in my head that this process is like coming out all over again. When your going threw it, it feels like the world on your shoulders compared to now I would be the first person to say oh good god just get over it. 

Thanks again
Jake
Jacob Perry

I refuse to wear my HIV as a badge of shame any longer.

 


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