Quantcast

Subscribe to:
POZ magazine
E-newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
April 19, 2014, 10:43:04 AM

Login with username, password and session length


Members
Stats
  • Total Posts: 620353
  • Total Topics: 46739
  • Online Today: 283
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: better worse better worse better worse  (Read 2064 times)

0 Members and 1 Guest are viewing this topic.

Offline zeb

  • Member
  • Posts: 172
better worse better worse better worse
« on: February 25, 2007, 07:21:40 PM »
Hi all,

First my thanks to all of you. The support is really great here. So here's an update.

Today I was on my own; i really got mad. but later i realized: 'hey i'm still here'
So what to do now? Shall I keep worrying everyday of the approx. 20 years or something that are left for me!?

No, I'm gonna reach out and i'm going to try to learn much about this disease.
And i wanna talk to realistic and optimistic people to learn from.

Thank you all! And a warm hug.
(And don't worry, i'll be back soon when i start panicing or start feeling sad again ;) )

Zeb

Offline zeb

  • Member
  • Posts: 172
Re: better worse better worse better worse
« Reply #1 on: February 25, 2007, 08:04:41 PM »
Sometimes it's so wierd...

When I am on this forum some people really sound like "pop your pills each day, your bloodworks regulary, live a normal life and you'll be fine for a long life"

Is that the new face of hiv? I can't believe it.

Offline J.R.E.

  • Member
  • Posts: 6,962
  • Joined Dec-2003 Living positive, since 1985.
Re: better worse better worse better worse
« Reply #2 on: February 25, 2007, 08:08:04 PM »
Sometimes it's so wierd...

When I am on this forum some people really sound like "pop your pills each day, your bloodworks regulary, live a normal life and you'll be fine for a long life"

Is that the new face of hiv? I can't believe it.


And there many more of us that realize, that it's much more then that...


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of DEC 9th, 2013,  t-cells are at 437 Viral load  <40 .

 Current % is at 16% (L)

  
 62 years young.

Offline mjmel

  • Member
  • Posts: 2,069
Re: better worse better worse better worse
« Reply #3 on: February 25, 2007, 08:32:51 PM »
Sometimes it's so weird...

When I am on this forum some people really sound like "pop your pills each day, your bloodworks regularly, live a normal life and you'll be fine for a long life"

Is that the new face of hiv? I can't believe it.
What's so weird about that? To indicate that's the basic game plan is a big improvement, Zeb. You should have heard what everyone was saying and thinking in 1989. If you mean to say that there is so much more baggage and stuff to deal with then I'd agree there is much more in the way a need of emotional support systems, buddies and certainly trials and tribulations that can't be forseen. Is that what is meant or implied?
 
Help me out here, J.R.E.

By the way, Zeb, those are admirable goals to fulfill --> "No, I'm gonna reach out and I'm going to try to learn much about this disease.
And i wanna talk to realistic and optimistic people to learn from."

Offline zeb

  • Member
  • Posts: 172
Re: better worse better worse better worse
« Reply #4 on: February 25, 2007, 08:47:37 PM »
Well Mjmel,

If in basic: popping your pills each day, live a normal life style and having a regular check up is the way to make it to the Golden Years then it is of course a big improvement.

But as a rookie I still can remember the images of young men covered with KS...
And I still am programmed with the message "Hey dude, the pills are only delaying your execution... So eventually you'll die of aids..."

That's why it sounds so wierd to me. I hear different things. But the main direction is: the pills work and you'll be around some time....
Still it's so wierd, so unreal...

Zeb

Offline jkinatl2

  • Member
  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: better worse better worse better worse
« Reply #5 on: February 25, 2007, 08:58:51 PM »
Don't forget that for some of us, perhaps more than the group is comfortable admitting, those pills are too toxic, or don't work. Or, in a decade or two of taking them, we have burned through the available options and are waiting for the next thing to drop from the sky.

And of course, there are those struggling with OIs, cancers which might be attributed to long-term exposure to the drugs like AZT, and other complications that do not fit neatly on a pill bottle.

Notwithstanding the people who look GREAT on paper, with excellent numbers... but are so disfigured by lipo or in such pain from PN or experience sudden, uncontrolled and violent diarrhea that they are prisoners in their homes.

Thing is, the meds are amazing. They have kept many of us alive far longer than anyone would have hoped or guessed.

But to pretend that this has become a non-impactful disease is the domain of the naive and the ignorant.





"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 tigger2376

  • Member
  • Posts: 462
  • too bad to die youngish!
Re: better worse better worse better worse
« Reply #6 on: February 25, 2007, 09:21:29 PM »
I try so hard to keep a 'positive' outlook. I know my meds are my lifesavers but every time I take them I hate them. I resent bitterly the side effects of one stupid unprotected fuck coming back to bite me on the ass each day. I hope one day it'll just be 'hey,drug time' and I'm getting there, but I didn't realise just how much anger I still have til I read this thread. My nicknames 'tigger' and thats how I feel..bounce up,bounce down,constantly. Seeing someone else come to the place where I want to be helps..thanks
I know i'm going to enjoy the party in the afterlife, but do you all mind that I'm going to be VERY late!!!

Offline DanielMark

  • Member
  • Posts: 1,475
Re: better worse better worse better worse
« Reply #7 on: February 26, 2007, 04:14:53 AM »
better worse better worse better worse

Love that title, Zeb.

Without the meds I take I wouldn't even still be here. Sure there may be nasty long term effects, but can they be any nastier than untreated HIV? I have my doubts.

Many people didn't have the choice of taking meds or not, and many more still don't. Thatís a humbling sobering thought.

Daniel

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline zeb

  • Member
  • Posts: 172
Re: better worse better worse better worse
« Reply #8 on: February 26, 2007, 04:37:57 AM »
Hi Daniel,

Clear! There's no other option than popping the pills. And that they keep us alive is good!
But what i'm trying to say is this: Some people present having hiv as a matter of pills and a long lifespan.

I hope so, but for me as a rookie it feels so unreal. It feels so unreal that I (now 38 yrs old) have to save money for my Golden Years. That fels so wierd... Beacuase on the other hand I'm still freaking out and scared of death. 'Death' still feels as the synonym of 'hiv' to me.

greets Zeb

Offline DanielMark

  • Member
  • Posts: 1,475
Re: better worse better worse better worse
« Reply #9 on: February 26, 2007, 05:17:35 AM »
I understand your anxiety Zeb, and I think about it at times too.

In time you'll adapt to the thought that having HIV is no longer a quick death sentence for most. It will become less and less a "weird" feeling and more and more simply the new reality you live with. At least it has for me.

I can't allow myself the luxury of dwelling on that part tho or I will put myself into depression and despair. Negative thinking is soul-destroying for me. Since Iíve done enough of that in my life, itís not the way I want to live.

After 18 years of living with this, I consider any day I wake up alive to be a bonus day Ė a gift when it comes right down to it.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Life

  • Member
  • Posts: 2,388
  • Member 2005
Re: better worse better worse better worse
« Reply #10 on: February 26, 2007, 05:50:47 AM »
Zeb, for you, and for many, it is as simple as you want to make it or as difficult and incomprehensible, unmanageable as you can dream up... Do yourself a favor - keep close to the surface.  What has happened to some may not be in your cards, so don't read this as something you will have to clearly and unilaterally have to go through...  Weird?  sure...

Offline steve

  • Member
  • Posts: 3
Re: better worse better worse better worse
« Reply #11 on: March 02, 2007, 09:33:12 PM »
I agree!! each day you wake up IS a BLESSING!

Steve

Offline twofires

  • Member
  • Posts: 345
    • Artists Farm
Re: better worse better worse better worse
« Reply #12 on: March 02, 2007, 09:39:12 PM »
death is a direct consequence of Life

there's no getting around it.

most folks just don't ever think about it
Who was it wrote; Give any one species too much rope and they'll fuck it up?
-Roger Waters

Offline DanielMark

  • Member
  • Posts: 1,475
Re: better worse better worse better worse
« Reply #13 on: March 03, 2007, 04:34:34 AM »
I agree!! each day you wake up IS a BLESSING!

It really is Steve, although some days it can seem more like a blessed curse. ;)

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline AustinWesley

  • Member
  • Posts: 815
    • HIV Discussion Group on Myspace!
Re: better worse better worse better worse
« Reply #14 on: March 03, 2007, 05:14:55 AM »

No, I'm gonna reach out and i'm going to try to learn much about this disease.
And i wanna talk to realistic and optimistic people to learn from.


Hey Zeb,

I think this is an intelligent approach.   I'm no expert, but I've learned a lot by seeking out those who exemplify what I want out of my own life.   Definitely important to surround yourself with as many optimistic and realistic people as possible.   

There are lots of people here like that.   I do understand your statements about pop a pill and you'll be fine etc.   I was initially told that repeatedly.   That sort of answer didn't help me either.

Just keep plugging away and you will find a LOT of good support with that approach.   I believe being informed is essential.   

Got questions, ask away!   You're bound to hear a variety of answers and opinions.   Take what ya need and leave the rest!

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline Mike89406

  • Member
  • Posts: 206
Re: better worse better worse better worse
« Reply #15 on: March 04, 2007, 04:35:48 AM »
Zeb,

Heres the thing some people are LTNP and most arent but you see there is different stages of health on this website. In the 80's there was no hope for a lot of people, 25 yrs later and the technology is better meds are better in some sense however you can see some people with OI's on here KS is still around there are many conditions that exist.

Dont forget some types of cancer are easier to get regardless of HAART. I have had 2 types of cancer in 1 years time frame. I always hear about someone from a forum member about someone with AIDS that died of something recently. 2 people within 3 mos died in my small HIV support group of about 10 people average 2005. One of cancer of of a heart attack.

If you want to think of reality pills are not a cure but only a means to suppress the virus. Theres no vaccine yet I doubt there will be a cure, but thats me.
There are people out there that wil die becuase of things like Crystal, some people cant get meds some people arent adherant at all.you just dont hear about them a lot.

My reality is I hate pills but I take them becuase of other conditions deterioting my immune system. I am healthy though I exercise I do things outside my treatment. I quit smoking and dont drink (becuase I want my liver to stay healthy).

There are little reminders especially when you start meds that you are HIV+ but you dont have to live you're life in the negative there is do much to do even now. I made a choice shortly after I was diagnosed to live life to the fullest.

Of course you dont need to think of HIV as a death sentence some people attribute it to diabetes in terms of chronicness. Why worry about dying when  you can try to live out you're dreams while you still have time? Of course there are things you cant control and never know when you're time is up but you dont have to think HIV/AIDS will be the way you die.

The way you live life is up to you from here on out.

Offline rick21007

  • Member
  • Posts: 286
Re: better worse better worse better worse
« Reply #16 on: March 04, 2007, 10:45:28 AM »
Zeb----having HIV is just one of the things most of us have to struggle with in a day.  Hopefully we all get better at coping.  HIV (diagnosed December 11, 2006) basically raised the learning curve for me.  Just one more thing in life that was not in my control and either I learn to deal with it or I don't--that is the only thing over which I have some control.  Somebody mentioned "Carpe Diem" on another thread as the dictate for living with HIV, or words to that effect.  That is advice to take to heart as far as I am concerned.  I've had to learn to become more mindful of the moment, to accept what is, and to breathe and  let go of the things I can't control.   The good news is that even when it is not smooth sailing (I battled with acute hep B and a nasty OI for most of last year.) we can learn to thrive and not just survive.
And one more thing---it makes all the difference in the world not to go it alone.  The forums have made a huge difference in my life.


Rick

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.