Quantcast

Subscribe to:
POZ magazine
Newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr Instagram
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
October 25, 2014, 06:29:10 AM

Login with username, password and session length


Members
Stats
  • Total Posts: 643512
  • Total Topics: 48964
  • Online Today: 174
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online
Users: 0
Guests: 110
Total: 110

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: 22 years now with full blown AIDS  (Read 8034 times)

0 Members and 1 Guest are viewing this topic.

Offline Tonny2

  • Member
  • Posts: 373
Re: 22 years now with full blown AIDS
« Reply #100 on: July 20, 2014, 04:05:48 PM »
Thanks for the clarification. I used the term full blown aids, but actually when you think of it, it seems to be a rather archaic term more suitable for the 80s or 90s than today. It's probably more of a cultural term than a medical one for sure. It definitely has a negative connotation and I've never been comfortable using it. I don't hear many use it, certainly none of my dcotors ever have that'd I've heard.

No doubt the term "aids" was thrown around a lot more in the old days to not only stir up fear mongering, and ostracizing, but also because at that time the virus just wasn't understood.

There's still a distinction of course, but I'm glad more people are aware that hiv and aids are NOT the same. And really, it's nobodys business except the patient and their doctors! Like I said I have a friend who technically has aids but he's healthy as can be and is a great guy. That's his life and I respect it.
ojo   Hi robby.....I think we are talking about esperinces here, I was told in 1994 I had full-blown-aids, not just ones, but twicw, by the ER doc and my ID doctor, my cd4 was 20...I'm glad you didn't get to the point of needing "help" (your immune system) to prevent or help your body to fight an infection....I think, it lies in here the term "AIDS", when your body need help (immune system) to defend itself....I don't think that AIDS is a term to scare people, it is a syndrome....AIDS still exist, that's why there are still conferences, to try to find a cure....in short, I think you can say that you have AIDS when your doctor gives you meds to prevent infections because a little guy call HIV have destroyed your defenses (cd4)is only a thought     ojo

Offline Tonny2

  • Member
  • Posts: 373
Re: 22 years now with full blown AIDS
« Reply #101 on: July 20, 2014, 04:09:17 PM »
ojo    I forgot....having HIV is scary too....ojo

Offline RobbyR

  • Member
  • Posts: 333
Re: 22 years now with full blown AIDS
« Reply #102 on: July 20, 2014, 04:52:50 PM »
This is a great discussion it's helped me learn a lot I hand tknown before about aids and hiv and the differences. I think there is still a big cultural stigma and misuse of the word "aids" but you are right it is a very real diagnosis still. I actually knew a guy who died of aids related complications several years ago. He was full of life and then I didn't see him for a long time but when I did the poor guy looked deathly sick. Not sure what happened but from what I gathered he simply hadn't gotten tested or knew he was poz and when he did his immune system was in bad shape and he endedup wasting away and dying of pneumonia I believe. It was so sad to lose him and see him suffer, and this was in about 2007! So yes aids is still very real medically no doubt. I constantly count my blessings that my overall health is reasonably good. Having hiv helps put things in perspective I try and never take things for granted.
Started Atripla August, 2010.

Offline zach

  • Member
  • Posts: 1,593
  • built to last
Re: 22 years now with full blown AIDS
« Reply #103 on: July 20, 2014, 05:38:21 PM »
as far as what difference the distinction can make... in my state, my clinic only treats patients with aids dx. they will absolutely without apology wait until you're near death before they even speak to you, much less bother taking your blood pressure

but i live in a red state below the bible belt, no secret they just want us to die, and be quick about it
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline Tonny2

  • Member
  • Posts: 373
Re: 22 years now with full blown AIDS
« Reply #104 on: July 20, 2014, 09:37:41 PM »
This is a great discussion it's helped me learn a lot I hand tknown before about aids and hiv and the differences. I think there is still a big cultural stigma and misuse of the word "aids" but you are right it is a very real diagnosis still. I actually knew a guy who died of aids related complications several years ago. He was full of life and then

You are right, your numbers (immune system) wasn't damage as like mine, but I survived "ful-blown-ais_, or aids, is just a terminology, but is still a dead sentence for those who don't test tnemself, or don't stick to the treatment...now eventhough my numbers are 498, I still check my body for any changes, bumps, nodes, etc, watch what I eat and especially where I eat (clean paces), wash my hand, etc, etc, because now with hiv/aids we have to be vigilant of our bodies...I mentioned before, a friend of mine, died of lymphoma non Hodgkin's, even tho his cd4 were 320, his cancer was caught late, that's why he died....pneumonia it was the caused that people with aids were dying in the 80's, and you said that your friend died in 2007..that's the proof that aids still kills...good luck, and take care of yourself, the drugs are so good now, that they avoid you gettings aids (help for your immune system to fight infection)   ojo

Offline Tonny2

  • Member
  • Posts: 373
Re: 22 years now with full blown AIDS
« Reply #105 on: July 20, 2014, 09:43:51 PM »
as far as what difference the distinction can make... in my state, my clinic only treats patients with aids dx. they will absolutely without apology wait until you're near death before they even speak to you, much less bother taking your blood pressure

but i live in a red state below the bible belt, no secret they just want us to die, and be quick about it

ojo  Zach, I'm really sorry for all the people you mention on your post, the most disgusting thing is that they talk about the bible, where is the compation...I've seen a lot of your messages, but I haven't read them all, cause my eye doesn't help me, but today I read about you disclosing, I'm sorry, but who ever is rejecting you, there weren't your friend, the rest of the people can go and read the bible, don't you think?..I'm with you, with hiv or aids, you seem a pretty likeable guy,,you can count on me for sure   ojo

Offline zach

  • Member
  • Posts: 1,593
  • built to last
Re: 22 years now with full blown AIDS
« Reply #106 on: July 20, 2014, 11:55:05 PM »
hey pochas, i may be wrong, but you're not in america are you?

its a figure of speech, the bible belt refers to an imaginary line (basically the south) that has traditionally leaned fundamentalist baptist. although i have some family, and a couple friends, that drink a little too much holy water, i'm pretty cool with freedom of religion. i give em all hell

i know it sounds like a great line that makes it easier to let go of loved ones. but its not entirely accurate.

it hurts to lose people. i accept people completely, flaws and all. when you've loved someone for a lifetime, losing them, even by rejection or betrayal... it hurts
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline Tonny2

  • Member
  • Posts: 373
Re: 22 years now with full blown AIDS
« Reply #107 on: July 21, 2014, 07:45:04 AM »
hey pochas, i may be wrong, but you're not in america are you?

ojo    hi Zach, I've lived in Ohio for the last 25 years, , and yes, I know everything about the south, mine (sending them to read the bible) was a figuty  speech, maybe they will learn more compation,and followes Jesus example....I'm with you on freedom of religion, but there are some fundamentalists in any different religion, that's why there isn't peace in this world, but this is a more complex subject.....I'm sorry for your loss, I haven'r felt it myself, but like you said, it has to be terrible feeling rejected, I guess, it will take some time for the waterd to calm down...I really lot of luck, and I'm still with you, sometimes we invest in something, sometimes we lose, other time we win...for sure you will recover from this...like a said before, you seem a likeable guy, you'll be fine     ojo

Offline zach

  • Member
  • Posts: 1,593
  • built to last
Re: 22 years now with full blown AIDS
« Reply #108 on: July 21, 2014, 08:57:54 AM »
i shouldn't have said anything about religion, that was wrong of me, i only made a passing half joking insult about the bible belt... i was not implying that religion was the root problem

the point i was making in my original post on this thread, is that an aids dx can have an impact in ways other than just a SS claim. i should have limited my post to only speak about the difference between an hiv vs aids dx.

my post in this thread, has nothing to do with my posts in other threads about the ripple effect of disclosure.

« Last Edit: July 21, 2014, 09:01:04 AM by zach »
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline drewm

  • Member
  • Posts: 1,161
Re: 22 years now with full blown AIDS
« Reply #109 on: July 21, 2014, 02:30:25 PM »
Folks pile on about "religion" all the time. Some believe and some don't. That's fine. My faith is part of my overall make-up. It's part of my DNA. Everyone is entitled to their own beliefs. For perspective, I am a Christian - gay - meat and potatoes gay man who is happily partnered but still enjoys a bath house romp. This is proof that 'my' God does not make mistakes and He truly loves everyone.

My problem with religion is when people use it to better themselves at everyone else's expense.
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline Tonny2

  • Member
  • Posts: 373
Re: 22 years now with full blown AIDS
« Reply #110 on: July 21, 2014, 03:40:56 PM »
Folks pile on about "religion" all the time. Some believe and some don't. That's fine. My faith is part of my overall make-up. It's part of my DNA. Everyone is entitled to their own beliefs. [/quotojo 

 i'm with you drewn on this, but no  in the bath house lol

Offline tednlou2

  • Member
  • Posts: 4,988
Re: 22 years now with full blown AIDS
« Reply #111 on: July 22, 2014, 12:49:59 AM »
as far as what difference the distinction can make... in my state, my clinic only treats patients with aids dx. they will absolutely without apology wait until you're near death before they even speak to you, much less bother taking your blood pressure

but i live in a red state below the bible belt, no secret they just want us to die, and be quick about it

If you are diagnosed with having AIDS by whatever measure and you don't work, you are required to apply for SSDI or SSI here, before getting ADAP.  You don't have to actively pursue it after that, but you have to apply.  Unless they've changed that, that is how it was in 2009.  I had to apply, because I had an AIDS dx (temporary crash due to being so sick, but it rebounded) and I wasn't working at the time.  Unless my ADAP coordinator didn't know what he was talking about, then that's how an AIDS dx made a difference.  If you were diagnosed with HIV and didn't work, you didn't have to apply for disability.  This may have all changed, since things do seem to change a lot with HIV guidelines. 

Offline Since1993

  • Member
  • Posts: 108
Re: 22 years now with full blown AIDS
« Reply #112 on: July 22, 2014, 01:37:50 AM »
If you are diagnosed with having AIDS by whatever measure and you don't work, you are required to apply for SSDI or SSI here, before getting ADAP.  You don't have to actively pursue it after that, but you have to apply.  Unless they've changed that, that is how it was in 2009.  I had to apply, because I had an AIDS dx (temporary crash due to being so sick, but it rebounded) and I wasn't working at the time.  Unless my ADAP coordinator didn't know what he was talking about, then that's how an AIDS dx made a difference.  If you were diagnosed with HIV and didn't work, you didn't have to apply for disability.  This may have all changed, since things do seem to change a lot with HIV guidelines.
In a lot of states, if your CD4 count is low with documentation of HIV infection, you automatically qualify for Medicaid and determined "disabled" by the state.  There are clinical differences in determining disability to qualify for Medicaid vs Social Security and even what your physician determines.  Medicaid and physicians determine disability differently than the Social Security Administration, which is why there are folks who are determined "disabled" by the state and their physician, yet not by the SSA.  The SSA determines disability based upon law and has a more stringent determination process.

Every state determines its own criteria for ADAP eligibility, which is why in one state, you can receive ADAP if your income is up to 400% of the Federal Poverty Level, yet in another state it may only be 200% of the Federal Poverty Level.  Every states ADAP program determines its own formulary for coverage.  Some states carry 200 HIV-related medications and some states only 40.  Some states ADAP coverage can range from 100% if you have no income, to co-pay assistance if you are insuranced, up to and including premium and outpatient co-pay assistance.  With the implementation of the ACA, if you don't have insurance coverage through your employer, you are required to apply for Medicaid and if denied, apply for and maintain an ACA policy.  That being said, most states Ryan White Care Part B/ADAP programs pay the insurance premiums, medication co-pay and outpatient co-pays or at least assist for all insurance, up to and including private insurance and Medicare.  They won't pay Medicare Part B premiums, but you do receive assistance with medication copays through Part D.

You don't have to have an AIDS diagnosis to receive ADAP assistance, but you do have to have laboratory-confirmed HIV infection by Western Blot or HIV Quantitative and CD4 count.  Then your income is taken into consideration and insurance status.  The message being that there is assistance available to help in getting primary care and medications for those who have HIV/AIDS and if anyone out there is reading this and not linked into care, there is help available in every state in the US.  Google "AIDS Service Organizations" and make an appointment with an intake coordinator in your locality. 




Offline phoenix

  • Member
  • Posts: 45
Re: 22 years now with full blown AIDS
« Reply #113 on: July 22, 2014, 02:01:49 AM »
thanks leatherman and I think a couple of others for answering my question.   
A positive attitude may not solve all your problems but it will annoy enough people to make it worthwhile.                              The point of the journey is not to arrive.

Offline leatherman

  • Member
  • Posts: 6,272
  • Google and HIV meds are Your Friends
Re: 22 years now with full blown AIDS
« Reply #114 on: July 22, 2014, 10:41:25 AM »
i shouldn't have said anything about religion, that was wrong of me
don't diss your dissing of religion.  ;)

Religion has stigmatized gay people for many years leading people, not only to suicide, but to risky behavior which helped propel the HIV epidemic once it gained a foothold in that subculture. Religion also has even more literal blood on its hands by leading people astray concerning treatment.

Of course, I understand that religions are changing, becoming more tolerant, and becoming more proactive about HIV education and treatment. However, living here in fundamental-Baptist Tea-Party-land South Carolina, few religious people here have changed their bigoted stigmatizing opinions. Religious people, and their churches, regularly disown their gay children, push people into suicide, speak derogatorily about gays and positive people, spread falsehoods about supposed HIV stereotypes, and lie about treatment all the while doing nothing to bring about real sex ed, HIV education or prevention. In fact, they often hinder bringing about real progress in education that could help alleviate the still rising epidemic in the Southern states.
leatherman (aka mIkIE)


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

Offline leatherman

  • Member
  • Posts: 6,272
  • Google and HIV meds are Your Friends
Re: 22 years now with full blown AIDS
« Reply #115 on: July 22, 2014, 10:43:42 AM »
thanks leatherman and I think a couple of others for answering my question.
interesting, isn't it? while I'm still not certain exactly what the OP was trying to find out, this thread really is filled with a lot of info  ;)
leatherman (aka mIkIE)


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

Offline Tonny2

  • Member
  • Posts: 373
Re: 22 years now with full blown AIDS
« Reply #116 on: July 22, 2014, 01:11:40 PM »
don't diss your dissing of religion.  ;)

Religion has stigmatized gay people for many years

ojo    well said, leatherman, in both of your last messages...pretty interesting, I've learned and get to know what some members think about the topics    ojo

Offline phoenix

  • Member
  • Posts: 45
Re: 22 years now with full blown AIDS
« Reply #117 on: July 22, 2014, 01:35:15 PM »
If you are talking about why it mattered to me. The reasons were personal. I have accepted the fact the I'm hiv pos but never thought of myself as having "AIDS". Maybe I haven't accepted my status as well as I thought. I will continue to learn and grow with this disease as best I can.
A positive attitude may not solve all your problems but it will annoy enough people to make it worthwhile.                              The point of the journey is not to arrive.

Offline zach

  • Member
  • Posts: 1,593
  • built to last
Re: 22 years now with full blown AIDS
« Reply #118 on: July 22, 2014, 01:39:35 PM »
not gonna bother with quoting, but i'm responding to teds message

i've gone through similar. like i said, my clinic only serves patients that have had an AIDS dx. but it doesn't just stop there, you're required to apply for every government benefit for which you may be entitled to. its not a buffet, take only what you need, they force you to go all in, or stand out in the cold. i had to be near death and indigent before they'd look my way. at my sickest i felt like a performing monkey jumping through flaming hoops of death.

gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline phoenix

  • Member
  • Posts: 45
Re: 22 years now with full blown AIDS
« Reply #119 on: July 22, 2014, 01:57:25 PM »
Zach  Understand you were responding to ted but fortunately I have insurance, so dx makes little difference. Its tough making the deductible but I'm getting by.
A positive attitude may not solve all your problems but it will annoy enough people to make it worthwhile.                              The point of the journey is not to arrive.

Offline zach

  • Member
  • Posts: 1,593
  • built to last
Re: 22 years now with full blown AIDS
« Reply #120 on: July 22, 2014, 02:20:51 PM »
hey man, we're all in this together, just different paths
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline Joe K

  • Global Moderator
  • Member
  • Posts: 3,795
  • 31 Years Poz
Re: 22 years now with full blown AIDS
« Reply #121 on: July 22, 2014, 02:52:21 PM »
Very interesting thread with a lot of good comments and opinions.  The one thing I will never understand is why some folks get so worked up about an AIDS diagnosis.  I've had AIDS for three decades and I simply do not care.  I don't care, because I am not defined by the virus I carry and for any people, who might look down on my because of an AIDS diagnosis, I don't care about them either.

My view has always been that your labs, etc., are but one indicator of your health and I worked through some of my sickest years, including while taking AZT, so having AIDS meant nothing to me.  It did not alter who I am, it did not change how I view myself and I have learned to never care what others think of me, unless they know me well, or I respect their opinion.

I believe too many people give away their own power, by letting the opinions of others influence them.  Of course we want to be liked, but sometimes the price is simply too high and many times, the people who look down on you because you have AIDS, do not warrant the respect of you caring what they think.

For me, it always comes back to: Recognizing those things you cannot change, so you avoid wasted effort and recognizing those things you can change, so you know where to direct your energies and hopefully, the wisdom to know the difference.

Joe

Offline Joe K

  • Global Moderator
  • Member
  • Posts: 3,795
  • 31 Years Poz
Re: 22 years now with full blown AIDS
« Reply #122 on: July 22, 2014, 03:02:56 PM »
You are right, your numbers (immune system) wasn't damage as like mine, but I survived "ful-blown-ais_, or aids, is just a terminology, but is still a dead sentence for those who don't test tnemself, or don't stick to the treatment...

This comment really bothered me, because there are many pozzies, who do everything right... they take care of themselves, they get medical care, they are adherent to their meds... yet they still die.  I urge everyone to be very careful about assuming what happens to other pozzies.  From the beginning, there have always been pozzies, who no matter what they did, no matter how hard they fought, they still lost the battle.  Please be sensitive to these folks, because nothing hurts them more, than to be told that they just are not trying, when they are.  It's not the people who are failing, it's the medication failing the patient.

Joe

Offline Tonny2

  • Member
  • Posts: 373
Re: 22 years now with full blown AIDS
« Reply #123 on: July 22, 2014, 03:28:47 PM »
This comment really bothered me, because there are many pozzies, who do everything right... they take care of themselves, they get medical care, they are adherent to their meds...

ojo...Hi Joe...I never meant to offend anyone, it maight be my poor English, I just lost a 30 years old friend who did everething right, never missed a dose and still he died last march, still hurts me to know of his death, what I'm trying to say is that even though we have good numbers, we have to watch out for any changes in our bodies, specially we LTS,...I had cd4 of 500 and I got anemia that almost killed me....I know that there are a lot of people who take their meds and the meds failed them, it happens to me Joe, I'm still alive, but legally blind, no able to work, I will never try to offend anybody because I'm on the same boat....So I'm sorry Joe you got it that way....I want to think, that is a case of misunderstanding    ojo

Offline Joe K

  • Global Moderator
  • Member
  • Posts: 3,795
  • 31 Years Poz
Re: 22 years now with full blown AIDS
« Reply #124 on: July 22, 2014, 03:38:49 PM »
ojo...Hi Joe...I never meant to offend anyone, it maight be my poor English, I just lost a 30 years old friend who did everething right, never missed a dose and still he died last march, still hurts me to know of his death, what I'm trying to say is that even though we have good numbers, we have to watch out for any changes in our bodies, specially we LTS,...I had cd4 of 500 and I got anemia that almost killed me....I know that there are a lot of people who take their meds and the meds failed them, it happens to me Joe, I'm still alive, but legally blind, no able to work, I will never try to offend anybody because I'm on the same boat....So I'm sorry Joe you got it that way....I want to think, that is a case of misunderstanding    ojo

Hello Pochas,

I should have included that I do not think you meant that statement in any negative fashion.  I just wanted to comment on how many people do think that some of us simply don't try hard enough and the proof is that we die.  I'm sorry for any confusion as that was never my intent.  Misunderstanding indeed.

Joe

Offline Tonny2

  • Member
  • Posts: 373
Re: 22 years now with full blown AIDS
« Reply #125 on: July 22, 2014, 05:17:31 PM »


ojo   Hi Joe, misunderstandind indeed.....I've been trying to support a lot of members on the "vivir con vih" for awhile, the griend I talke on this thread that died in March, I met him here, we became friends, and still hurts his death because he looked for my support and I feel like if we both the battle against aids, I know I couldn't do more than what his doctor could do, but still it hurts, and it is my fault feeling hurt, because I promised myself no to get that involved with somebody with hiv, because I'm very sensible when it come to what happens to my friends, but, I promised him, that I will keep sharing my experiencies with whoever wants to do it...this is for you "tonny" 11/15/1980-03/06/2014    o,jo,

Offline leatherman

  • Member
  • Posts: 6,272
  • Google and HIV meds are Your Friends
Re: 22 years now with full blown AIDS
« Reply #126 on: July 22, 2014, 05:40:52 PM »
If you are talking about why it mattered to me. The reasons were personal.
nope.  :D I was talking about mozartian

Thanks for the catch Leatherman ... I merged this thread for context . It does seem like a discussion on semantics to the OP . Mystery solved .
Can someone tell me what the current medical definitions are for AIDS and HIV Positive? 
leatherman (aka mIkIE)


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

Offline wolfter

  • Member
  • Posts: 4,647
Re: 22 years now with full blown AIDS
« Reply #127 on: July 22, 2014, 05:46:30 PM »
There are also many who did everything wrong and still became LTS.   ;)

I'd still love to know what the OP was hoping to garner.  Classification and being tormented by those terms is yet another way to be marginalized.  I don't fit squarely into any of those squares that needed checked.  Simply put, those terms are used as a way for "others" to see me and not how I define or see myself.  I'm way more than my virus or my illnesses.  (or my constant injuries)....lol

Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline phoenix

  • Member
  • Posts: 45
Re: 22 years now with full blown AIDS
« Reply #128 on: July 22, 2014, 06:56:27 PM »
leatherman  sorry : (  my mistake the thread has grown since I ask my question.
A positive attitude may not solve all your problems but it will annoy enough people to make it worthwhile.                              The point of the journey is not to arrive.

Offline siongi

  • Member
  • Posts: 42
Re: 22 years now with full blown AIDS
« Reply #129 on: July 23, 2014, 01:52:07 AM »
I was diagonized in 2002 and my CD 4 s at the time was seven! Yes 7!

Think i must have had what you call full blown AIDS..I was down with TB, HERBS simplex,boils, weigth loss everyone was stunned ! I knew i was going.. But since then here i am going strong; CD 4 s operate around 300 and apart from the usual flus which come with the weather i have no much complains. You are an old timer and that gives some us the encouragement that we so desire; that life must go on and that you can plan your life as if you arent infected. Thanks and welcome!


Offline mozartian

  • Member
  • Posts: 24
Re: 22 years now with full blown AIDS
« Reply #130 on: July 23, 2014, 02:49:50 AM »

Thank you.  I believe you are the first person now that has responded and that had AIDS when they tested positive.  You did not say though when you had the last negative test.  I tested negative six months prior to testing positive with a 32 Tcell count.

I have not been responding here because a gang was forming immediately around me that was going to lynch me because of my incorrect terminology.  But upon listening to all of them I found that the terminology was so different from person to person and in effect they were telling me that this is your personal terminology and then there is the legal terminology and then there is the medical terminology and they all differ and what I was hearing was that you should make your personal terminology whatever you choose that will help you have a positive attitude and to make the most out of your life. 

There is no mailing list for gay people that everyone gets on when they come out and there is no mailing list for people who have tested positive that keeps them abreast of current terminology and changes that have taken place. This type of thing is never in the news and I would even go so far as to say that terminology is never even talked about in gay publications.  How do we even find out about this kind of thing?  Even the doctors do not seem to know.  No wonder that we all go around calling the same thing by different names.  It is a wonder some times that gay people know much at all about what is happening in the gay community.  This forum here is one of the few places in which you can discuss things like this.     

Offline zach

  • Member
  • Posts: 1,593
  • built to last
Re: 22 years now with full blown AIDS
« Reply #131 on: July 23, 2014, 03:13:35 AM »
edited my entire post away

i want nothing to do with this kind of labeling
« Last Edit: July 23, 2014, 03:22:42 AM by zach »
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline Jeff G

  • Administrator
  • Member
  • Posts: 12,186
  • How am I doing Beren ?
Re: 22 years now with full blown AIDS
« Reply #132 on: July 23, 2014, 09:11:28 AM »
Thank you.  I believe you are the first person now that has responded and that had AIDS when they tested positive.  You did not say though when you had the last negative test.  I tested negative six months prior to testing positive with a 32 Tcell count.

I have not been responding here because a gang was forming immediately around me that was going to lynch me because of my incorrect terminology.  But upon listening to all of them I found that the terminology was so different from person to person and in effect they were telling me that this is your personal terminology and then there is the legal terminology and then there is the medical terminology and they all differ and what I was hearing was that you should make your personal terminology whatever you choose that will help you have a positive attitude and to make the most out of your life. 

There is no mailing list for gay people that everyone gets on when they come out and there is no mailing list for people who have tested positive that keeps them abreast of current terminology and changes that have taken place. This type of thing is never in the news and I would even go so far as to say that terminology is never even talked about in gay publications.  How do we even find out about this kind of thing?  Even the doctors do not seem to know.  No wonder that we all go around calling the same thing by different names.  It is a wonder some times that gay people know much at all about what is happening in the gay community.  This forum here is one of the few places in which you can discuss things like this.     

Please do not think anyone had even a inkling of bad intentions when we responded to you . You started the topic and we discussed it, isn't that what you wanted ?  :) . I do wish you had answered our questions in return for us responding to yours .

Offline mecch

  • Member
  • Posts: 11,930
  • red pill? or blue pill?
Re: 22 years now with full blown AIDS
« Reply #133 on: July 23, 2014, 09:31:05 AM »
The gay publications in French talk about HIV and AIDS and HIV prevention all the time.

Also there are publications for HIV+ people that are for all genders and orientations, because HIV is not a virus just for gays.

Mozartian - the virus has been around a few decades now - of course terminology changes. 

The world changes all the time. Culturally, in the bast 10 or 20 years, one of the features of culture is questioning labels and definitions...   If you are looking for everything in life to be labeled and everyone to agree upon the labelling, you'll be disappointed, these days...


“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mozartian

  • Member
  • Posts: 24
Re: 22 years now with full blown AIDS
« Reply #134 on: July 23, 2014, 10:17:21 AM »
I believe that the question asked most frequently was "What's it to ya?"  "Why is this so important for you to know?" 

This is a forum for discussing information.  I want correct information.  I have already learned that there is no "full blown" or "half blown" AIDS.  It is just simply AIDS.  You cannot communicate very well with people when you have different definitions for the same words.  My doctor asks me to speak at seminars and fund raisers now and then when he gets letters asking if there is a patient of his that is a long term survivor.  I have spoken twice and just talked for maybe ten minutes about positive attitude and denying the disease control over my body.  I talk about visualization and mind over matter.  I have no problem there.  But the first thing that I say is how, when and what do I have that makes me qualified to speak. 

I would like to say that in as short a fashion as possible.  I do not want to get into explaining the disease from beginning to end but I want them to know at what stage I am. 

OK, here are my first two sentences.  "When I tested positive for the AIDS virus in 1992 I had a Tcell count of 32.  Not only did I have the virus, but I was immediately diagnosed with AIDS." 

Take it apart and tell me how to say this.  I used to say "I was diagnosed with full blown AIDS", but I now know that was incorrect and so I have changed that.  I believe that I am incorrectly calling the virus "the AIDS virus".  I used to say "the virus that causes AIDS", but I am quite sure that is incorrect as well.  I would like to say this in as brief a manner as possible without having to add another sentence to explain the difference between HIV and AIDS.

I might add that there have been doctors, researchers and people with AIDS attending and not once have any of them come up to me and corrected by wording.  They may know it is incorrect, but I suspect that terminology is not the point of what I say.  Just that they know I have AIDS. 

Offline Jeff G

  • Administrator
  • Member
  • Posts: 12,186
  • How am I doing Beren ?
Re: 22 years now with full blown AIDS
« Reply #135 on: July 23, 2014, 10:24:54 AM »
Its important to know so that people can answer and discuss the topic in the proper context and give pertinent responsive replys . I am living with HIV and thats what best defines the state of my health . Thank you for telling us why its important to you .

Offline mecch

  • Member
  • Posts: 11,930
  • red pill? or blue pill?
Re: 22 years now with full blown AIDS
« Reply #136 on: July 23, 2014, 10:36:09 AM »
Yes, it's HIV.  If you say "the HIV virus" or "the virus HIV" - everyone will understand as well, even though the virus is already in H.I.V.  ;D

Yes the "AIDS VIRUS" - people will understand but its not correct. 
The "virus that causes AIDS" - well that is only sometimes correct.  Yes it can/might cause AIDS.  Anyway, people will understand.

If you want to be true to science, you could say, "I was diagnosed HIV+" or "I was diagnosed with HIV....."  And "I got the AIDS diagnosis at the same time."

And you could explain to the audience what an AIDS diagnosis meant then, and now, generally, and to you personally.  I'm sure this would be interesting and informative for everyone and you would be making a generous and personal contribution to public knowledge. Thanks!
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mozartian

  • Member
  • Posts: 24
Re: 22 years now with full blown AIDS
« Reply #137 on: July 23, 2014, 10:46:39 AM »
In 1992 the doctors told me that I had three years to live.  Now that may have been a bad thing for them to say and I am sure doctors do not even venture to give you a guess now.  But that is what they said to me.  And the reason I want the audience to know at what stage I was at, is so they realize that I was looking at death, that I was to the abyss and looked at death at 42 years of age.  I do not have any secrets to staying alive but being that was the information I was told, it may be okay then to see what has kept me going all these years past the three year mark.  I could simply say "I have been living with AIDS for 22 years now."  And skip the Tcell count and the word "virus" altogether.  I have gone from stage 4 to stage 2 or something like that, but I am at least being truthful that I have had AIDS all these years. 

Offline mecch

  • Member
  • Posts: 11,930
  • red pill? or blue pill?
Re: 22 years now with full blown AIDS
« Reply #138 on: July 23, 2014, 11:06:53 AM »
You have the right to relate your own experience!  If you are worried about not representing everyone else's - don't worry - and you can tell your audience, "my experience is mine, and what happens when people get HIV today might be quite different."

Doctors certainly gave grim prognosis back in the 80s and 90's before meds. Some people got a "couple months" so your "3 years" wasn't the grimmest.
Doctors DO still give a prognosis. If you are interested. When I got infected, and diagnosed 6 years ago, my specialist said, and I quote, translated from French of course, "Normal life. Vie normale.... Normal life. (he repeated it a few times.) Go about your life normally. You won't get sick and you should expect a normal life span."  Thats a quote man.

Sure you have had AIDS all these years thats what people explained in this thread, once you got that diagnosis once, you can keep it and do with it as you please.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline wolfter

  • Member
  • Posts: 4,647
Re: 22 years now with full blown AIDS
« Reply #139 on: July 23, 2014, 11:09:56 AM »


I have not been responding here because a gang was forming immediately around me that was going to lynch me because of my incorrect terminology. 

Say what????  I think everyone was quite respectful considering we couldn't get you to "spell out" your concerns.  One of your latest posts could have eliminated all that confusion.

Even though a lot of terms are technically incorrect, many of them had practical uses. Full blown AIDS was practical in the early days because it was a way of discussing someone's imminent death without actually uttering those words.  We knew that phrase meant someone was so wracked with OI's that they probably wouldn't make it.  I believe it was easier for us to utter that instead of saying such and such is on their death bed.

 I'm not even a baby boomer and I entered the world of the infected at quite a young age and was told I could possibly live to be 30 if everything went well.  I wasn't for fortunate.  By the age of 26, I had "full blown AIDS" and wasn't expected to even leave the hospital. 

Perhaps I'm in a different "box" as I have OK numbers without OI's so I guess I could simply say I'm positive.  But that doesn't address the residual issues I deal with because of my "previous" AIDS diagnosis.  Cognitive disorders, osteoporosis...etc. 

I've witnessed threads where gang mentality existed and this sir was not the case here.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline drewm

  • Member
  • Posts: 1,161
Re: 22 years now with full blown AIDS
« Reply #140 on: July 23, 2014, 02:13:26 PM »
I was dxd in May of 2010 with "full blown AIDS." My CD 4 count was -eight- and my VL was a half million. I had PCP pneumonia and Karposi's lesions. Technically, I was not expected to live 5 years. Next year will, obviously, be my 5 year aids-a-versary and there may very well be a HUGE gaylabration. Everyone's experiences are different. Through the human experience, we all see things differently. I hated having an AIDS diagnoses. I still do with a noted exception. The dx comes in handy sometimes when getting assistance to keep fighting the virus. I have learned to accept it and run with when needed.

I also happen to agree with wolfter in that I think everyone was quite respectful as well. Also, even with my AIDS diagnoses, a doctor from MD Anderson who was treating AIDS in NYC in the 80's told me "you will be OK. We can reverse these numbers and you will be OK."

I had a choice to either see the cup as half empty and live out my five years or believe the doc from MD Anderson. I am glad I chose the second!
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline Tonny2

  • Member
  • Posts: 373
Re: 22 years now with full blown AIDS
« Reply #141 on: July 23, 2014, 02:37:57 PM »


ojo   I'm glad wolfter and drewn talked about being dx with full-blown- aids, even in 2010 doctors still referred as ful-blown-aids...when I was dx, full-blown-aids, pcp...my doc said I will live for two more years this was in 1995, I'm still here, unless my spirit is the one writing this, lol...I think that people who, thank god, hasn't gotten low cd4 numbers, they don't recognized that the term ecists, yet...thx guys and good luck to everybody with aids or hiv, still, we have to keep fighting to survive, excuse my bad English and my blindness    ojo

Offline mozartian

  • Member
  • Posts: 24
Re: 22 years now with full blown AIDS
« Reply #142 on: July 23, 2014, 02:49:40 PM »
I will give you the rest of my speech.  It is written for people who are infected.  Not really for doctors or others.  If there is only one person there infected I want to speak to him.  After I give them my condition in the first paragraph, I go on here......

There was a nurse in the clinic who came in and talked to me after I was given the initial  dose of AZT.  She said “You must think of these pills defeating the virus.  You must visualize them knocking down and killing the virus.  There is a war going on in your body and both sides want control.  You must see the soldiers you are sending in taking over the virus at every turn.  You must not for even a minute allow the virus to take control.  This is a mind over body matter and attitude is the operative word.   You must have a positive attitude at all times.  You must put yourself around positive people and influences and you must guard your visualization from anything that distracts you from the job at hand.  Do not let anyone discourage you or bring negativity into your life.  Do not hang around negative people.  Do not allow yourself even one negative thought.  Positive will defeat the negative.  Keep your life in the right sphere of influence and you will win the battle.  You are living with AIDS.   You are not dying FROM IT.” 

And I remember the instant that a veil was lifted from my eyes and I realized that this was living your life.  This was what life was all about.  This was a lesson not just in defeating a virus, but in the total way that I look at life.  And that started what for me has been the pattern of thinking that has kept me going.  I was not going to allow the virus to have control of my body.  I was going to deny the virus a home and order it out for good. 

I have visited websites now for long term survivors and have read their stories.  I read about a man who has now lived for 30 years with the virus.  And one of the things that these survivors talked about was exactly the same thing that I had discovered.  And that was denial.  I simply deny the disease in every respect.  Even to deny that you have it.  Why not go the limit and deny the disease right out of your life?  The disease does not know any better.  What have I got to lose?  Deny the disease a home and tell it to go away.  Believe God for a miracle.  Tell the virus it is not welcome any more and to go away for good.               

I have lived now for 22 years with the virus – one third of my life I have been living with the virus.  At my last physical examination, my doctor said I was healthier now than I have ever been in the last 22 years. 

Believe that what you think, you are.  Believe that what you think, will come to you.  And pretty soon, what you have believed, does come back to you.  And life does truly give back what you put into it.  This is my experience, and I believe it can be the same for you.  Thank you.

OK, I am putting it out there now.  I am not a writer and I am sure it can be improved .  I will take you suggestions.
                                                                                                                                       

Offline Tonny2

  • Member
  • Posts: 373
Re: 22 years now with full blown AIDS
« Reply #143 on: July 23, 2014, 04:44:39 PM »
I will give you the rest of my speech.  It is written for people who are infected.  Not really for doctors or others.  If there is only one person there infected I want to speak to him.  After I give them my condition in the first paragraph, I go on here...

ojo...I just want to let you know that I'm happy for your 22 years living with hiv/aids....I will celebrate my 20th anniversary with hiv/aids next Novemebe....good luck, and I will see you here in the next 22 years....que no!!!   ojo.

 


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.