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Author Topic: Quality or quanity  (Read 7797 times)

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Offline leatherman

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Re: Quality or quanity
« Reply #50 on: August 04, 2011, 05:19:00 PM »
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.
chemo and radiation for cancer really suck too but plenty of people deal with the side effects just to stay alive.
(Practically living in the cancer ward of the hospital for 2 months while my partner dealt with non-Hodgkins lymphoma gave me quite a perspective on this. Even though I have been hospitalized a few times with AIDS, I think cancer is a lot worse to have.)

I really have never understood something since your story is scattered throughout several threads. Did you complain about the side effects to your doctor? Did s/he not suggest remedies or changing to something else? Did you not demand a change to other meds? Or did you just stop and then tell your doctor? I mean you had already made the commitment to start the meds and had been on them for a while. Personally, it sounds like either you need to get a better working relationship with your doctor, or a different doctor (which is worked in my situation).

oh and I sorry if my previous answer was too convulted. I guess I replied quantity and quality in a round about way by explaining my personal bad experiences with stopping meds (the same "quality vs quantity" dilemma you are inquiring about) and how in the long run thankfully meds have given me BOTH quantity and quality of life.
leatherman (aka mIkIE)


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

Offline leatherman

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Re: Quality or quanity
« Reply #51 on: August 04, 2011, 05:22:01 PM »
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
actually, a portion of people here have been told exactly that. ;) And some more than once. Thankfully the processing science, improved medications, and people's will to live turned those medical predictions into falsehoods. ;D
leatherman (aka mIkIE)


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

Offline boomer

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Re: Quality or quanity
« Reply #52 on: August 04, 2011, 05:38:43 PM »
Hello all,

It took me three plus years to "recover".  Just sayin'.

Jake,
Hang in there. A day at a time. It's easy to give advice but nobody knows the whole story. My experience was a real mind bender and when I was "there" nothing looked, smelled, tasted or felt like they do now. I hope you find your way no matter what the destination.

Wishing you health, happiness and prosperity,

boomer
« Last Edit: August 04, 2011, 05:55:13 PM by boomer »

Offline Hellraiser

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Re: Quality or quanity
« Reply #53 on: August 04, 2011, 05:52:33 PM »
Quality, although I think the real question you're asking is Do you prefer living longer with no side effects or living briefly without them.  What I think you're not taking into consideration is that should you choose not to take meds the possibility is there for an agonizing slow decay of your immune system which will eventually leave your quality of life at nil, but it won't necessarily kill you.  That potentially takes a lot longer.  Suffering through PCP, wasting, KS, really you could just read the list of OIs some of them are particularly horrendous.  So my response is really I choose the meds not only to improve the duration of my life but to improve its quality as well.

Offline Since2005

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Re: Quality or quanity
« Reply #54 on: August 04, 2011, 05:59:20 PM »
Hey,

I think you are suffering from side effects a lot ( from what I have read). If you feel like going off from meds may help you then talk to your doctor and IF HE/SHE AGRESS then go off from meds. In one of your earler threads, you have mentioined that you have started meds eary on when your T-cell was above 500 (I believe). There are lots of controversy on starting meds early on or not. You have been infected by the virus not long I believe less than 2-3 years. So, IF YOUR DOCTOR IS OKAY with you being without meds for a while to see how your body reacts then you could decide to go off meds. I would sure recomend UNDER  DOC SUPERVISION, and with conitinious monitoring you could sure try to see how you could do without meds. If that doesn't work ,then start with a different combination of meds with lesser side effects come back to where are you now or may be even to a better situation. I know I am not a qualified person to give suggestions ( for very many reasons), but there are lots of options available for you to get help changing the way you feel now. Wish you the best of luck!!
« Last Edit: August 04, 2011, 06:01:05 PM by Since2005 »

Offline buginme2

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Re: Quality or quanity
« Reply #55 on: August 04, 2011, 06:09:10 PM »
Since2005,  the OP has already stopped taking meds (with his dr's permission).

So to the question at hand.  I pick both quality and quanitity and I refuse to accept that it has to be one or the other.  I can be a stubborn ass and I'll fight for both.

Offline bocker3

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Re: Quality or quanity
« Reply #56 on: August 04, 2011, 06:38:22 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

Jake,

I am sorry, but in your OP you said the following:
" Is it worth it. Is it worth taking preventive measures to prolong your life."

That does not sound like your are "numb", it sounds like you are depressed.  It sounds like you are crying out for help.  This "mob" you mention are a bunch of folks who care.  Just like the family and friends that you can't talk to about this get upset because they care.  Your posts are not coming off like you are asking some existential questions -- they strike me (and many others) as a man in crisis -- whether he knows it or not.
So I ask again -- why is everyone around seeing one thing and you are seeing another?  Why is the whole world wrong, but you are right?

Finally -- when one is "lost"  -- one shouldn't sit around until direction finds you -- you have to take steps to find your direction.  Sitting and waiting for life to happen TO YOU is a pretty big sign of depression.

I say all this with the most positive intent I can .......

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 PozJeepGuy

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Re: Quality or quanity
« Reply #57 on: August 04, 2011, 07:22:10 PM »
At first I was under the belief being so new to this just do what the doctor tells you.  I now understand to take more control. When I got to the point where it effected my work that's when I went to my doctor and said something has to change here. They suggested another regiment and I just said no. At the time my numbers were above great and I can afford to stop for awhile and see what happens. Well one month off and I went from 1081 to 790 which I know is still good and went from undec. To 13000 something. I go back next Wednesday now for the two months off and see where everything is. I hate  frustrated that my life bow revoles around numbers and doctor visits. I am truly to my core fiber a free will kind of person.  Live life as thow there is no tomorrow.  I feel as thow this has been taken away from me. A example would be- I like my job alot, but now I feel stuck because of insurance and the freedom here to be out and up front about my status.  All this just had me thinking the original question quality or quanity. I haven't decided if I want to move forward this way. I know it's selfish but it's all I know. I don't like asking for help it drives me crazy and makes me feel trapped. The impulsive side of me (which has always run the show) says fuck it to all this and keeps going as thow nothing has changed then there's the adult side (which is now taking over) saying think of your friends and family. I know in my head what to do but it's getting the heart to follow
Jacob Perry

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

Online wolfter

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Re: Quality or quanity
« Reply #58 on: August 04, 2011, 07:34:52 PM »
I'm sorry Jake, but what exactly are you expecting from the masses?  You don't listen to the majority here, your doctors and anyone else who disagrees.  Are you just looking for a "yes" man? 

since you're cute, I'll  change my opinion and will just say whatever you like.  I think you're making the correct choices; now can I stop over?   
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline mecch

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Re: Quality or quanity
« Reply #59 on: August 04, 2011, 07:45:19 PM »
Why dont you just take ENJOY the treatment interruption for the good its doing?  Maybe it will last quite awhile before you need to go back on HAART.  I'm sure if you talk alot with your doctor he/she will support you now and support you when its time for HAART again, to find a combo that might be tolerable.  

I see it this way for myself - while I am "in control" of my life and I could be in control of my HIV treatment, I let my docs offer their wisdom and advice about what I should do and usually its a good start. And then if there are adjustments, we talk more and they find a new solution.  

I am not the expert on HIV and I'm either for mental health, so I gotta benefit from the therapist, and benefit from the doctor.  And so on.  Its a semantic or existential question finally, who is "in control" if you don't decide all the details about your life, but who has that possibility, or would even want it while there is still living to do.

We are social animals and jobs and relationships and past-times, its always a negotiation between the people living these moments together.



« Last Edit: August 04, 2011, 08:02:43 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline thunter34

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Re: Quality or quanity
« Reply #60 on: August 04, 2011, 08:00:13 PM »
Live life as thow there is no tomorrow.  I feel as thow this has been taken away from me.

Actually, just the opposite.  That's exactly what HAS been given to you.



I suppose one way to think of it is this:  What sort of example would you want to lead for others who find themselves in this situation?  To just chuck it all and flame out?  Or to take the bull by the horns and make the most of the life you still HAVE? 

Who do you want to be, Jake?
AIDS isn't for sissies.

Offline leatherman

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Re: Quality or quanity
« Reply #61 on: August 04, 2011, 08:11:02 PM »
At first I was under the belief being so new to this just do what the doctor tells you.  I now understand to take more control. When I got to the point where it effected my work that's when I went to my doctor and said something has to change here. They suggested another regiment and I just said no.
Ah! So when you complained/explained the problem to the doctor, you chose to ignore him and go your own way. Okay. I gotcha now. ;) You're one of those that doesn't care what doctors say. So why bother asking us anything? We're not even doctors.  :D

oh and by the way, not following good medical advice really isn't taking control of your life - it's actually giving away control, letting things run amok, and allowing HIV to flourish.

I hate  frustrated that my life bow revoles around numbers and doctor visits.
with your numbers and this early in the game, if you get proper treatment, you'll only have to suffer with a visit to the doctor once every four to six months. Going every 4-6 wks when you're sick or just starting meds can be a pain in the ass; but I'll tell you this when you get stablized the once-every-6-months-or-so schedule is a piece of cake.  ;)
leatherman (aka mIkIE)


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

Offline PozJeepGuy

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Re: Quality or quanity
« Reply #62 on: August 04, 2011, 09:55:00 PM »
Mecch you say it better than I can.  You have a great way with words. Leather I haven't explained myself I think. When I was on the drug study and things were going bad and I stopped. The doctor and I together decided I could take a break. A week later the study people came back and said since I have only been on the meds they now want to follow my digression off meds. So I'm am going once a month still. I'm being watched like a hawk. I do everything they tell me.

Really this was meant to be a kinda philosophical thread. I do hear what you are saying about the depression and I have address this with my counselor,  yes I have a touch of depression. But not to some point of locking myself away and sit in the dark room.  I am just the kinda of person that always ask these kind of questions.
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 #63 on: August 04, 2011, 10:08:39 PM »
...
Really this was meant to be a kinda philosophical thread.
...

Philosophically, I don't generally buy into the "quality or quantity" way of thinking.  It's too limiting, and I don't think life works that way.  But many people sure like to debate in this "either / or" "which would you choose" fashion.  "Quantity or Quality" ... "Money or Beauty" ... "Paper or Plastic".  Many people don't have all these things, but it's not because you are limited to one "or" the other.  Think differently.
"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 PozJeepGuy

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Re: Quality or quanity
« Reply #64 on: August 04, 2011, 10:29:01 PM »
Buck I see your point
Jacob Perry

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

Offline peternay81

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Re: Quality or quanity
« Reply #65 on: August 14, 2011, 09:42:41 PM »
I say Quality!!!! I know exactly how you feel Meds were horrible for me too, just the thought of them makes my whole body tremble, I suffered through hell until my doc changed my regimen to one that was less aggressive to me... Hang in there and ask your doc to help you find the right regimen for you...

Offline jkinatl2

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Re: Quality or quanity
« Reply #66 on: August 15, 2011, 10:48:06 AM »
FYI - you can have over a decade of life, with diminishing quality, if you eshew meds. You can find yourself slowly pulling away from friends and family as your energy level slowly dips.

Oh, you wont notice it at first. But it will come, until the gym five times a week becomes four, three, once. Until making it out of bed becomes a chore, and taking out the trash demands a little sit down.  See, your body will be quite busy fighting off a large viral load, an the excess energy - that is, the energy that makes your life have quality, will be sacrificed.

Then you'll be the guy who takes three weeks to recover from a cold that other people shake off in three days. You'll be the guy whose self esteem plummets because he is flabby from lack of exercise. You will be the guy who calls at the last minute to cancel plans because its just too hard to get that energy up.

Eventually the calls will slow, maybe stop. Except the calls from work, wondering where you are. And creditors, when bills don't get paid. And friends, worried, then exasperated, then resigned.

Oh sure the OI's will come. And maybe one will take you out.

But your quality of life will have already died.

Coming to terms with HIV is important. Rest assured, it has come to terms with you.

You won't believe me, I know. So go on and prove me wrong. I stand as evidence that I am right.
"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline mecch

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Re: Quality or quanity
« Reply #67 on: August 15, 2011, 11:41:27 AM »
FYI - you can have over a decade of life, with diminishing quality, if you eshew meds. You can find yourself slowly pulling away from friends and family as your energy level slowly dips.

Oh, you wont notice it at first. But it will come, until the gym five times a week becomes four, three, once. Until making it out of bed becomes a chore, and taking out the trash demands a little sit down.  See, your body will be quite busy fighting off a large viral load, an the excess energy - that is, the energy that makes your life have quality, will be sacrificed.

Then you'll be the guy who takes three weeks to recover from a cold that other people shake off in three days. You'll be the guy whose self esteem plummets because he is flabby from lack of exercise. You will be the guy who calls at the last minute to cancel plans because its just too hard to get that energy up.

Eventually the calls will slow, maybe stop. Except the calls from work, wondering where you are. And creditors, when bills don't get paid. And friends, worried, then exasperated, then resigned.

Oh sure the OI's will come. And maybe one will take you out.

But your quality of life will have already died.

Coming to terms with HIV is important. Rest assured, it has come to terms with you.

You won't believe me, I know. So go on and prove me wrong. I stand as evidence that I am right.


Great writing. We must save this and send it when necessary. It's a harrowing too true and very succinct picture of the future.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline David_CA

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Re: Quality or quanity
« Reply #68 on: August 15, 2011, 01:16:19 PM »
FYI - you can have over a decade of life, with diminishing quality, if you eshew meds. You can find yourself slowly pulling away from friends and family as your energy level slowly dips....


Hell, I wouldn't even have had 5 years without meds, most likely.  I'm thankful for the 'option' of having meds, and try to keep it in perspective of knowing what those without meds went through in the past (and present, to an extent).
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%
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Offline Miss Philicia

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Re: Quality or quanity
« Reply #69 on: August 15, 2011, 01:19:16 PM »
I would have died within a year without meds most likely. I'll take quantity without reservation.
"I’ve slept with enough men to know that I’m not gay"

Offline hope_for_a_cure

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Re: Quality or quanity
« Reply #70 on: August 15, 2011, 04:04:12 PM »
Hell, I wouldn't even have had 5 years without meds, most likely.

Its hard to know how much longer I would have lasted... my own fault for not getting tested until it was almost too late.  My body was shutting down so it may have just been a month or two at the most. 


I'll take quantity without reservation.

Yep!  Although at that time I was 'ok' with moving on, I am glad I did NOT die and have no issues with taking my pill every night.  There are a few more things in life I would really like to do.

Offline surf18

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Re: Quality or quanity
« Reply #71 on: August 15, 2011, 05:14:20 PM »
Great post jk!

Offline buginme2

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Re: Quality or quanity
« Reply #72 on: August 15, 2011, 06:43:35 PM »
Jk, Great post. 


 


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