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.
July 29, 2014, 03:45:10 AM

Login with username, password and session length


Members
  • Total Members: 23065
  • Latest: MikeDH
Stats
  • Total Posts: 632181
  • Total Topics: 47869
  • Online Today: 227
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online
Users: 4
Guests: 185
Total: 189

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: Why So Unfair?  (Read 13557 times)

0 Members and 1 Guest are viewing this topic.

Offline WhySoUnfair

  • Member
  • Posts: 69
Why So Unfair?
« on: May 03, 2010, 09:47:34 AM »
drugged, raped, infected.
it is indeed the end of the world.
I'm young, tall, handsome, ivy educated, promising...but now I just want to die...There is no future, no hope, no tomorrow, but just the curse of shame, regret and guilt...
I really don't know how to deal with my life. I keep thinking that now I'm + when I walk, when I talk, when I eat, when I drink, when I brush my teeth, when I sleep...
why life is so unfair? I'm so depressed now and I really don't see the reason the live. I feel so lonely and scared.
do I still have a future? BF stopped talking to me after I told him that I was infected. who the hell wants to date an HIV+ guy? will I ever find a relationship again? who the hell wants to be friends with an HIV+ guy? not allowed to travel to some countries, not allowed to work in many countries, not allowed to immigrate to many countries. they call it chronic and manageable, but it is terminal to my mind, feeling and soul. will I ever be happy again? I'm so scared.
So Unfair !



Offline WhySoUnfair

  • Member
  • Posts: 69
Re: Why So Unfair?
« Reply #1 on: May 03, 2010, 09:55:13 AM »
drugged, raped, infected.
it is indeed the end of the world.
I'm young, tall, handsome, ivy educated, promising...but now I just want to die...There is no future, no hope, no tomorrow, but just the curse of shame, regret and guilt...
I really don't know how to deal with my life. I keep thinking that now I'm + when I walk, when I talk, when I eat, when I drink, when I brush my teeth, when I sleep...
why life is so unfair? I'm so depressed now and I really don't see the reason the live. I feel so lonely and scared.
do I still have a future? BF stopped talking to me after I told him that I was infected. who the hell wants to date an HIV+ guy? will I ever find a relationship again? who the hell wants to be friends with an HIV+ guy? not allowed to travel to some countries, not allowed to work in many countries, not allowed to immigrate to many countries. they call it chronic and manageable, but it is terminal to my mind, feeling and soul. will I ever be happy again? I'm so scared.
So Unfair !

is there really any treatment improvement ever since the 1995 cocktail therapy? why we still use the same therapy after 15 years? I'm not scared of death, but I'm scared of AIDS.

I've been reading all the HIV/AIDS breakthrough news, but it seems that there is no follow-up ever after such news.
where is the HOPE? where is TOMORROW?

Offline Jeff G

  • Administrator
  • Member
  • Posts: 10,810
  • How am I doing Beren ?
Re: Why So Unfair?
« Reply #2 on: May 03, 2010, 09:56:44 AM »
Welcome to the forums Whyso .
Testing positive can be a real shock . I urge you to get some counseling to help you through this tough adjustment period .

I have read how you feel here but I must tell you living with HIV is not the end of the world . I have done it for 25 + years and you can to.

It gets better I promise .

Offline WhySoUnfair

  • Member
  • Posts: 69
Re: Why So Unfair?
« Reply #3 on: May 03, 2010, 10:07:32 AM »
jg, I just feel there is no hope. I'm not afraid of death but I don't want to have HIV.
have you ever been really happy after your diagnosis?
do you think of HIV evyday?
I've been reading all the HIV/AIDS breakthrough news from Tre, Stem Cell to Banana...but it seems that there is no follow-up ever since the news. We are still using the 1995 cocktail therapy, and I do know where is tomorrow...
I'm so scared...

Offline Miss Philicia

  • Member
  • Posts: 23,891
  • celebrity poster, faker & poser
Re: Why So Unfair?
« Reply #4 on: May 03, 2010, 10:19:40 AM »
If someone drugged and raped you I hope you called the police.
"I’ve slept with enough men to know that I’m not gay"

Offline Jeff G

  • Administrator
  • Member
  • Posts: 10,810
  • How am I doing Beren ?
Re: Why So Unfair?
« Reply #5 on: May 03, 2010, 10:22:51 AM »
jg, I just feel there is no hope. I'm not afraid of death but I don't want to have HIV.
have you ever been really happy after your diagnosis?
do you think of HIV evyday?
I've been reading all the HIV/AIDS breakthrough news from Tre, Stem Cell to Banana...but it seems that there is no follow-up ever since the news. We are still using the 1995 cocktail therapy, and I do know where is tomorrow...
I'm so scared...

Yes ... I am happy and healthy . I do think of HIV everyday because I'm on meds to control the virus but that is just part of my day to day routine .

Its clear to me from reading your post that you are in crisis mode right now . This forum is an excellent place for information and support so I'm happy you found it . There is no substatute for the help of a qualified counselor . Please consider talking to your doctor or local aids support organisation for the help you need for support .

There are others here that are far more qualified to answer your questions about medications than I . I bet some one will be along shortly to discuss it with you .      

Offline veritas

  • Member
  • Posts: 1,408
Re: Why So Unfair?
« Reply #6 on: May 03, 2010, 11:02:59 AM »

WhySo,

Sorry to hear about your ordeal.

 Your feelings, concerning hiv infection, are quite understandable.I dare say, all on these forums have had those feelings. You know you will have to go through the gambit of emotions before the acceptance phase, when you will focus on learning all you can about our disease.
Yes, a disease, nothing more nothing less. You are still the person you were before, a young, handsome,ivy educated and yes, promising individual who happens to have HIV. You will learn how to cope and how to take your medications. You will find out that having HIV is not the end, but , the beginning of a new journey which doesn't necessarily have to be fearful, as much as diligent. In some ways, life changing, however, still promising.

  Your friends might change, especially those who wouldn't accept your condition, but were they really friends to begin with? There are plenty of good people out there who will accept you. Finding them is easier than you think right now. You automatically have people to talk to right here. You found the right place to begin your journey. You will be happy again.

   There has been treatment improvement. The medications being used today are a lot less toxic and easier to take. I know, I've tried most of them. The diligent work being done by the top medical researchers in the world, will one day deliver that which we all long for ----. However, it will take time.
Hopefully, it occurs sooner rather than later.

Don't lose hope!  It will get better.

v

Offline J220

  • Member
  • Posts: 587
Re: Why So Unfair?
« Reply #7 on: May 03, 2010, 11:27:46 AM »
I don't know how long ago you were infected but there is a normal period of post-infection stress and deppression. It can be severe (I know, I've been there) but after a while things do get better emotionally. Life does go on. After that, it's a matter of perspective, the cup half empty vs. half full. Does it suck to be infected? You bet. But does life go on? You bet. It IS a manageable condition.

They way I personally choose to see it is this way: if it were not for meds I would probably be dead by now. But I'm not. I live breathe, dream, hope..and yes, I fornicate like a rabbit on occassion (sorry, details private lol!). I choose to see my situation as a temporary one where I am on a holding pattern until the next treatement revolution comes along, and who knows maybe even a cure.

The KNOWLEDGE about how the virus works is expanding rapidly, and that is the first step before learning how to permanently defeat it. It will happen, someday. When? Sorry, the batteries of my crystal ball ran out...but it will happen. Maybe in my lifetime, maybe in someone elses...but right now, right this mnute, I am getting ready to go to work like anybody else, and in a few weeks I have vacations like anyone else....where I will get on a plane  (haven't decided yet where to), like anyone else. And once there I will get laid, like anyone else (everyone uses condoms no?), have dinner, see the sights, meet people, enjoy life....and I will have a GREAT time...like everyone else.

So you see...life does go on....you'll see...give it time. In the meantime, if you have depression, stress, anxiety, go see a therapist, it's imperative to do so if you cannot handle this period of your life, which is essentially post-traumatic stress. If need be you can take anti-stress medications like lozarepam or something, they really do help.

Take our collective word....with time you will understand: LIFE GOES ON!

All our best.
« Last Edit: May 03, 2010, 11:38:29 AM by J220 »
"Hope is my philosophy
Just needs days in which to be
Love of Life means hope for me
Born on a New Day" - John David

Offline J220

  • Member
  • Posts: 587
Re: Why So Unfair?
« Reply #8 on: May 03, 2010, 11:34:50 AM »
P.S. again don't know how long you were infected, but may I offer another piece of advice. KEEP YOUR STATUS PRIVATE for the time being. I know that when I was in post-traumatic stress dealing with this, for some reason I decided to tell my mom...worst mistake, because as supportive as she was and is, it just broke her heart with worry (she didn't understand that we are not in 1980, and now this is a manageable condition- she knows better now).

The point is that I was not thinking clearly and told a few family members (thank god I didn't tell any friends at all) about my status, mainly for emotional support, but now that the storm has passed, I see that it was totally uncessesary. But now that I've told them, I can't un-ring the bell. So for the time being, TELL NO ONE.

Once you are in a better place emotionally then you can decide rationally who to share this very intimate, private matter, which is no one's business but your own- except in a sexual setting of course, that goes without saying. But socially, no one needs to know.

I say this because you wrote "who wants to be friends with someone who is poz". Well your friends have no business knowing this, so don't tell them, period.
« Last Edit: May 03, 2010, 11:44:51 AM by J220 »
"Hope is my philosophy
Just needs days in which to be
Love of Life means hope for me
Born on a New Day" - John David

Offline Hellraiser

  • Member
  • Posts: 4,136
  • Semi-misanthropic
Re: Why So Unfair?
« Reply #9 on: May 03, 2010, 11:41:36 AM »
I'm going to echo what was just said.  When you are first diagnosed you mourn for yourself for a while.  This is for good reason as an era of your life is over.  Your life will be slightly different now, but not unbearably so.  You have a minor cross to bear, but you're not carrying it alone.  All of us here have done the same for a while.  Generally after the intial shock of testing positive people either go one of two directions and settle into a "life goes on pattern" or some people become a lot more morose and it weighs on their mind heavily.  This is how I've observed it anyway.

We all think about it every once in a while, but the preoccupation fades as it's just another part of yourself.  I think given some time you will not let it get you down quite so much, but it is definitely something you will need to adjust to.

Offline geobee

  • Member
  • Posts: 266
Re: Why So Unfair?
« Reply #10 on: May 03, 2010, 01:03:05 PM »
Hey WSUF,

I've been infected for less than a year, through an unlikely way (oral sex) and have def had some pretty low moments -- I got dumped by my partner of 20 yrs who, on the way out, cleaned out the bank account!  What's helped me is getting a good therapist, a good doctor, reaching out to family and friends.  The guys (and gals) on this site are also pretty smart and supportive.  That's all the advice I've got, just wanted to say I was thinking about you since your post and pulling for you.  It will get better.

Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 24,393
Re: Why So Unfair?
« Reply #11 on: May 03, 2010, 01:12:01 PM »
jg, I just feel there is no hope. I'm not afraid of death but I don't want to have HIV.
have you ever been really happy after your diagnosis?
do you think of HIV evyday?
I've been reading all the HIV/AIDS breakthrough news from Tre, Stem Cell to Banana...but it seems that there is no follow-up ever since the news. We are still using the 1995 cocktail therapy, and I do know where is tomorrow...
I'm so scared...

You don't want to have HIV. Who does? But you DO have it. That's the harsh truth. So now it's a matter of dealing with it. 

Being afraid is understandable, but gradually you are going to see that your life is going to go and it's still going to be good. Most importantly you need to have a doctor with whom you can develop a good working partnership. That will be very important to staying healthy. You'll get to know what you need to do. You'll find a lot of informed support here so bring your questions and your concerns or just hang out.

And...even though you'd rather not be here, welcome.
Andy Velez

Offline mecch

  • Member
  • Posts: 11,244
  • red pill? or blue pill?
Re: Why So Unfair?
« Reply #12 on: May 03, 2010, 02:02:12 PM »
Sorry about your diagnosis.

On the other hand, since you are such a golden boy, tall handsome ivy league etc etc, you're in a great position to have HIV become a rather minor part of your life. Really. You'll see, once you get over the pity fest and start feeling confident again in your qualities and the basic facts of your situation.

Can you just for a minute imagine how turly shitty HIV can be for someone totally on the margins.  But you are not, by your own (rather self-satisfied and) let's hope accurate description.  

I think its a very rotten deal the way you contracted HIV and you need to think about how much shock and emotion is related to rape and disease transmission, and how much is about HIV specifically.

I do hope that the police are investigating.  

Maybe funnel some of this anger and disappoint off yourself, since you have done nothing wrong, there is no neeed to beat yourself up about it.  
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline leatherman

  • Member
  • Posts: 6,059
  • Google and HIV meds are Your Friends
Re: Why So Unfair?
« Reply #13 on: May 03, 2010, 02:18:04 PM »
Welcome Why,
Sorry you're here with us; but glad you found us. It's definitely all scary at first; but that's because you're not educated enough about HIV and the meds. Might I suggest you start off by reading through some of the Lessons here at aidsmeds.com (http://www.aidsmeds.com/articles/Introduction_4702.shtml). There's a wealth of material just about nearly everything. When you're finished there, and if you still have questions, just post away here in the forums and there are plenty of people who can help you figure out the ropes.

I'm so depressed now and I really don't see the reason the live.
goodness! :o Why so serious?  ;) You have exactly all the same reasons to live as you did the day before you got back those test results. People get back diagnoses of HIV, cancer, diabetes and all sorts of horrible things everyday. But unless you're typing from the hospital on your deathbed (a place many of us have been and recovered from), you should still have a lot of hope about what the future will hold. You just need to read up those lessons and learn how to tackle this illness - as you would if you were diagnosed with anything else. ;)

but it seems that there is no follow-up ever since the news. ....
We are still using the 1995 cocktail therapy
Case in point, then you've been reading the wrong stuff. There's been a ton of follow-up through the last 15 yrs and a lot of new developments (heck there's even more in the pipeline to come!). We're actually using the cocktails from around 2005, which is a full decade later and with a helluva lot of improvement. So obviously, there's quite a bit of information the lessons would help you with then as you learn more about the virus that you are infected with.

I'm going into my 19th year of being poz (and was a lot sicker back in those days with those 1995 meds ;) ) and there are plenty of others around, like jg1962, who have dealt with HIV even longer. So if we could have managed 20+ yrs, through less-effective, more side-effect-ridden meds, then there is no reason for you not to have hope that you'll do better and live longer with today's regimens.
leatherman (aka mIkIE)


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

Offline tommy246

  • member
  • Member
  • Posts: 435
Re: Why So Unfair?
« Reply #14 on: May 03, 2010, 02:21:31 PM »
Sorry to see you feel so low i did 16 months ago but time heals i thought about it 24-7 and people on here said time heals you dont believe it but it does , i never think about it now and have my old life back ,1 tab a day and a full life span ahead of us thats positive. Meds are improving constantly , we are the lucky ones LTS folk really went through hard times with old meds , so try and stay focused and for now just take one day at a time
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline WhySoUnfair

  • Member
  • Posts: 69
Re: Why So Unfair?
« Reply #15 on: May 04, 2010, 09:17:33 AM »
thank you all for the support my dearest friends.

I was drugged and raped in Jan and was tested neg in Feb. Tested again two weeks ago and it came back poz. I totally collapsed when I got the result -- it was the darkest day in my life.
I spent two weeks searching all the information online and I was so shocked when I saw all the AIDS pics I could find on google image. I sent emails to every single name appeared in those HIV breakthrough news but still have not received any response.

went to see the therapist yesterday. she told me that it's a chronic and manageable disease, I will have sth like 30 more yrs and it's better than cancer, etc etc. Oh dear, if it were cancer, you would receive all kinds of emotional support from everybody everywhere. if it's HIV, then you just become a rat on the dining table in Nobu. I don't want to die in my 50s !!! I think that's still golden age !!! But now, I have no self-esteem, no confidence, no hope...

my doctor asked me to do another blood work to check the CD4 stuff, but I refused cos I really need some more time to accept the truth.

so may I please ask you, my dearest friends --

do you really think we can have a NORMAL life of being HIV+? Is being HIV+ NORMAL? What makes you happy when you think of HIV+? How do you adjust your emotion when you think of HIV+? How do you maintain your positive attitude when you face the fear of HIV+?

WE BELIEVE:
LIFE GOES ON!
WE HAVE HOPE!



Offline Jeff G

  • Administrator
  • Member
  • Posts: 10,810
  • How am I doing Beren ?
Re: Why So Unfair?
« Reply #16 on: May 04, 2010, 09:34:56 AM »
One of the ways I keep a positive attitude is to confront HIV in a proactive way .

I make sure I keep all my doctor appointments and lab work up to date and take my meds . This gives me peace of mind knowing the virus is in check and I don't have to worry about getting sick .  


Who knows ... with you being newly poz you may not need meds yet .  
« Last Edit: May 04, 2010, 09:36:45 AM by jg1962 »

Offline leatherman

  • Member
  • Posts: 6,059
  • Google and HIV meds are Your Friends
Re: Why So Unfair?
« Reply #17 on: May 04, 2010, 10:16:35 AM »
I don't want to die in my 50s !!! I think that's still golden age !!!
http://www.poz.com/articles/hiv_survival_mortality_761_18083.shtml
Survival among HIV-positive men who keep their CD4 counts above 500 cells for at least three years is comparable with that of the general population, according to optimistic data from a large European cohort reported on Friday, February 19, at the 17th Conference on Retroviruses and Opportunistic Infections (CROI).

As I mentioned to you before, many of us here contracted HIV many decades ago (some of us have even been so sick to have been at the point of having AIDS) and yet are still living today. I myself contracted HIV probably around 1985 when I was 25. When I was 35 in 1995, I was in a hospital with pneumonia and told I was about to die from AIDS. Currently in another two years, I'll turn 50 (eek! :D ) and I'm healthier than I've been in the last two decades thanks to the improvement in the meds over that last 20 yrs.

(I sure don't think I'm approaching my "golden years" either LOL Didn't you know that 50 is the new 40? ;D You really need to get with the times. ;) You think we're still using meds from the early 90s and that being 50 is somehow the end of life. ROFL I don't plan to be in my "golden yrs" until I'm in my 70s)

I spent two weeks searching all the information online and I was so shocked when I saw all the AIDS pics I could find on google image. I sent emails to every single name appeared in those HIV breakthrough news but still have not received any response.
of course, if you go looking for the worst information, you're going to find it. :D (As I said, you really need to read the Lessons here at AidsMeds.com.) HIV+ people on medications don't look like that! HIV+ people, with good CD4 counts and/or on meds, are still working at their jobs and living life to the fullest - they are people probably passing you in the street everyday. They're sure not "aids cases" with their pictures online.

and I'm not surprised you didn't receive any responses. Just who did you write?  ::) :D Big name scientists and doctors who don't have time to communicate with people who are irrationally scared about dying because they just tested poz? ;) Heck, I could probably write those people and they wouldn't respond to me either - neither would Bill Gates, the president, and the list goes on. Just because they didn't respond, doesn't mean a thing. (heck I have a hard time getting my family to respond to emails much less busy strangers. LOL) They didn't respond because they're expecting your doctor to give you more information and you to educate yourself about this health problem that you have, so you understand, that there are treatments against HIV that can help you to, more than likely, live a full and normal life.

my doctor asked me to do another blood work to check the CD4 stuff
I would suggest that you get past your fears and actually tackle the job of handling your health issues though. Just like a diabetic has to check their blood sugar level, whether they want to or not, to know if and how much insulin they need to talk, you definitely need to know your viral load and cd4 count to know when to properly treat the HIV. Untreated HIV eventually leads to AIDS. Treated HIV should allow you to live (since you seem to be in your 20s) an average lifespan which could be into your 60s or 70s (or even 80s since you have to figure in other health risks and genetics)
leatherman (aka mIkIE)


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

Offline mecch

  • Member
  • Posts: 11,244
  • red pill? or blue pill?
Re: Why So Unfair?
« Reply #18 on: May 04, 2010, 11:21:26 AM »
Read about Stephen Gendin. He was HIV+ at Brown in the late 80's early 90s. Before any treatment. He took all his advantages, similar to yours - tall handsome great mind great education - and lived a full live and was never snubbed at beautiful people events in downtown New York. 
You have HAART. You'll see, you will rally and you will get your self esteem back and even be stronger and more appealing than before.

http://www.thebody.com/content/art30452.html
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Dachshund

  • Member
  • Posts: 5,941
Re: Why So Unfair?
« Reply #19 on: May 04, 2010, 06:13:55 PM »
Rape is a felony. Have you reported this to the authorities?

Offline Rev. Moon

  • Member
  • Posts: 3,782
  • Smart ass faggot ©
Re: Why So Unfair?
« Reply #20 on: May 05, 2010, 12:08:03 AM »
drugged, raped, infected.
it is indeed the end of the world.
I'm young, tall, handsome, ivy educated, promising...but now I just want to die...

why life is so unfair?

Such a shame that so many of us round here are apparently old, short, ugly, and --at best-- community college educated (in some cases we are completely illiterate, we're just lucky to own software that types and reads).  No promise either, I suppose.

Oh, and we got our virus from past mistakes (or, in some cases, immaculate infections).  No criminal (nor the world at large) is to blame.

Still, we look forward to living life to its fullest on a daily basis.  No fear, no shame, no worries about what is fair and what's not.  This virus does not discriminate.

Welcome to the forums and good luck.
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,847
  • Vegas baby!
Re: Why So Unfair?
« Reply #21 on: May 05, 2010, 04:26:46 AM »
I honestly don't see how not getting your bloodwork done is going to help you accept your HIV diagnosis.  And like a couple others have said, being drugged and raped is a crime, and should be reported to the authorities.  Not dealing with that isn't going to help you either.  If you truly want to come to the point of acceptance of your HIV status, then you need to do the things to take keep the virus in check.  You surely don't want to let the virus run wild, and end up in the hospital on your deathbed, do you?
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline tommy246

  • member
  • Member
  • Posts: 435
Re: Why So Unfair?
« Reply #22 on: May 05, 2010, 08:45:58 AM »
You should buy the book by dr gallant called 101 questions and answers about hiv it is extremely helpful and will put your mind at rest .
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline MarkB

  • Member
  • Posts: 292
Re: Why So Unfair?
« Reply #23 on: May 05, 2010, 06:40:35 PM »
@ WhySoUnfair

I was so shocked when I saw all the AIDS pics I could find on google image. I sent emails to every single name appeared in those HIV breakthrough news but still have not received any response.
I am not the most knowledgeable of those who post on these forums, but it may be important for you to hear many voices on this point. The images you have seen are NOT the whole story; and many of them, sadly, are the images of those who do not, or did not, have access to the kind of medication you will now be able to receive.

Quote
went to see the therapist yesterday. she told me that it's a chronic and manageable disease
Indeed it is; but if she did say that you will have "30 more years" (I do not know how old you are) then she was giving a conservative estimate. There is no reason, given care and a responsible attitude to your health, that you should not have a full life-span. By way of contrast, I offer the example of one of my closest friends. He does not have HIV: what he has is diabetes. He must test his blood between 10 and 20 times a day; he must inject himself with insulin sometimes hourly and take up to 15 pills a day merely to control his condition. His life is dictated by diabetes, which may well kill him long before he grows old. You, on the other hand, may well only have to take one pill a day (and it may possibly be years before you require medication) in order to control your own chronic condition.

Quote
I have no self-esteem, no confidence, no hope...
That is, perhaps, the first of your opponents to overcome. There cannot be any of us on this forum who has not felt like that at some point; but we have come to understand that our worth as human beings has not been diminished for the simple fact that we have a virus. And neither has yours.

Quote
my doctor asked me to do another blood work to check the CD4 stuff, but I refused cos I really need some more time to accept the truth.
I know you are suffering at the moment - but I must ask: are you wise in this decision? Is it not the case that knowing more, being in possession of more facts about your condition, gives you and those who have care of you a better understanding of your medical needs? Please reconsider.

As you rightly say:
Quote
WE BELIEVE:
LIFE GOES ON!
WE HAVE HOPE!
Hold on to that. You are not alone. There are knowledgeable and wise people on this forum who can advise you. And please believe me when I say that there is better medication, and greater understanding, of this disease than at any time in the past. Life is not fair: it never was, and it does not come with any guarantees. But you have not suddenly become a virus: you remain yourself, with all your talents and what you have to offer.

I hope you will want to come back to these forums, as I did, and realise that life is changed, not ended.

Mark

Offline Miss Philicia

  • Member
  • Posts: 23,891
  • celebrity poster, faker & poser
Re: Why So Unfair?
« Reply #24 on: May 06, 2010, 12:50:50 AM »
Rape is a felony. Have you reported this to the authorities?

Good point
"I’ve slept with enough men to know that I’m not gay"

Offline elf

  • Member
  • Posts: 596
Re: Why So Unfair?
« Reply #25 on: May 06, 2010, 08:46:33 AM »
My advice: get yourself occupied instead of preoccupied.
I am 27 and tested positive 18 months ago...
Now I'm on medication.
I've been studying a lot.
Will be getting my diploma (M.D). in 3 months.

You can be ok.
You are not a virus.
I haven't dated since my infection,
I preferred studying.

As soon as I get some time, I will travel the world.

Kisses from Southern Europe. :-*
Let's have a Kiki!

Offline aupointillimite

  • Member
  • Posts: 3,229
  • FUS DO RAH!
Re: Why So Unfair?
« Reply #26 on: May 07, 2010, 09:57:21 PM »
Hey.

I was diagnosed over five years ago when I was 22- and I know it's really raw the first few months.  It's only natural to be preoccupied with it.

But eventually, it fades into background noise as it just becomes part of your life.  A part of your life that needs to be managed, of course, but not the defining feature.  I've been living with my boyfriend for two years, and he's a neggie.  There are decent people out there who don't see you a walking biohazard. 

It's only natural to feel helpless, but one thing that I've learned that helps to not feel that way is to take charge of a situation.  Like, you could help put a rapist in prison, for example.  That would probably be a good thing right now.     
Your tastebuds can't repel flavor of this magnitude!

Offline GNYC09

  • Member
  • Posts: 702
Re: Why So Unfair?
« Reply #27 on: May 07, 2010, 10:25:51 PM »
Dear Why,
I'm so sorry to hear about the rape and your diagnosis.  There's been good advice given here including the recommendation re: the police.  

Read this article titled, "Hope: The Most Caring Gift," which helped me during my darkest moments.  I hope  it also helps you.

Definitely stick with the therapy and increase the frequency if needed.

Good luck!!

Offline HealWithin

  • member
  • Posts: 1
Re: Why So Unfair?
« Reply #28 on: May 08, 2010, 03:08:27 PM »
Yes life can be or seem unfair at times! no matter how safe we
try to experience it? it may return our trust as untold layers of
emotional pain and fear. Anyone can make a mistake regardless
of race..gender..or social standing.Your feeling of isolation and
loneliness is a natural human reaction to being positive+for many
people.Its a process that can rob you of happiness and self worth
if you allow it too.Remember you are not HIV`it is hiv that is
within you (But not who you are) Yes life can be unfair! but it
is also fair to say): the gift of life still flows through you, and you
have the support and concern of all those who will help you
through this transition.



Offline tednlou2

  • Member
  • Posts: 4,763
Re: Why So Unfair?
« Reply #29 on: May 09, 2010, 02:32:45 AM »
I'm about 15 months into knowing my status.  However, I've known for years that I was poz.  I just didn't want to face it and get tested.  I got sick with pneumonia and that is how I was told.  If I hadn't gotten sick, I'd probably have gotten very ill with AIDS because I'm not sure I would had the courage to get tested.  It is good you know.

I have come such a long way.  However, I still get depressed and worry about getting sick with something.  I have the irrational fears--like can this mildew on the shower curtain hurt me?  I need to change my toothbrush every couple weeks to avoid germs...stuff like that which is irrational. 

I have found this site to be very helpful.  You can also ask questions to HIV docs at thebody.com.  John Hopkins HIV Guide with Dr. Gallant is a good resource---just google that and you'll find the website. 

To answer your question--  I think about HIV all day long unless I'm very busy.  I worry what the future will hold.  I hate that I have this virus, but I can't change it.  I get mad at myself for allowing it to happen.  I have a friend who has cancer and I see everything she is going through.  I tell myself it could be worse. 

You should get into therapy to deal with HIV and being raped.  Therapy has helped me.  You didn't say whether you reported the rape.  Is it because you don't know who it was or because you feel ashamed?  The guy needs to be stopped before he does it again.

Offline mecch

  • Member
  • Posts: 11,244
  • red pill? or blue pill?
Re: Why So Unfair?
« Reply #30 on: May 09, 2010, 06:12:09 AM »
Flash - the OP may have disappeared into the ether.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline leatherman

  • Member
  • Posts: 6,059
  • Google and HIV meds are Your Friends
Re: Why So Unfair?
« Reply #31 on: May 09, 2010, 10:17:41 AM »
Flash - the OP may have disappeared into the ether.
why do you say that? ??? not to besmirch the OP or anyone; but this isn't real-time chat and for all we know the OP only gets to log on from a library access point once a week. (not every pozzie, in fact a lot of pozzies around the world, are not "privileged" enough to have internet access and be on the forums constantly) Or maybe he's been busy out buying a mother's day present. ;D

here at 9:35 on 5/9 it says that the OP was last active Today at 09:24:32 am
the OP's last post was in this thread just a few days ago at May 04, 2010, 09:17:33 am

besides that, the OP was/is having issues wrapping his brain around being poz and realizing that it's 2010 not 1995. Hopefully the OP has been taking some time to read up about current treatment options and life expectancy and is busy contemplating all that - plus adjusting to the new paradigm that he's not going to die (with proper meds) and is probably going to live out a "normal" life.

maybe, he's even already adjusted and is out living his life normally instead of sitting around here obsessing about HIV. Hey, I know it's wishful thinking that that kind of change could happen for the OP so fast, but we all know that, with the right info, the OP should end up having that kind of change of attitude. Most of us here have come to grips with having HIV just like people learn to deal with all the other issues in life. ;) (lordy :D, if people can adjust to having dead partners and parents, they can surely adjust to having a disease. LOL)

at least your post does show one thing though that WhysoUnfair should take notice of - we're thinking about the OP and wondering how he's doing. Not posting just a couple of days has gotten mecch :-* all flustered and worried about you.  ;) ;D
leatherman (aka mIkIE)


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

Offline mecch

  • Member
  • Posts: 11,244
  • red pill? or blue pill?
Re: Why So Unfair?
« Reply #32 on: May 09, 2010, 10:42:22 AM »
at least your post does show one thing though that WhysoUnfair should take notice of - we're thinking about the OP and wondering how he's doing. Not posting just a couple of days has gotten mecch :-* all flustered and worried about you.  ;) ;D

yep. all in due time I guess.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline WhySoUnfair

  • Member
  • Posts: 69
Re: Why So Unfair?
« Reply #33 on: May 09, 2010, 08:29:46 PM »
Thanks for all the response. I've been busy dealing with my depression and dialing the suicide & crisis hotline. I'm glad that I can find support here but actually I wish I had more support in my real life. I told my mom about my status and she's very supportive. Thank GOD!

I didn't report the rape to the police -- I didn't know why. Maybe I was trying to deny the truth.

I still keep thinking about suicide all the time. Have you ever had the thought? if so, what made you to change your mind?

Offline Matty the Damned

  • Member
  • Posts: 12,198
  • Ninja Please
Re: Why So Unfair?
« Reply #34 on: May 09, 2010, 08:35:36 PM »
Thanks for all the response. I've been busy dealing with my depression and dialing the suicide & crisis hotline. I'm glad that I can find support here but actually I wish I had more support in my real life. I told my mom about my status and she's very supportive. Thank GOD!

I didn't report the rape to the police -- I didn't know why. Maybe I was trying to deny the truth.

I still keep thinking about suicide all the time. Have you ever had the thought? if so, what made you to change your mind?

You're a long time dead.

MtD

Offline leatherman

  • Member
  • Posts: 6,059
  • Google and HIV meds are Your Friends
Re: Why So Unfair?
« Reply #35 on: May 09, 2010, 09:32:01 PM »
I still keep thinking about suicide all the time.
I can't speak to the issues of being drugged and raped; but being diagnosed with HIV is no reason to consider suicide. Sure it means a change in your life, to handle the meds and issues of being positive; but life is about change. There's never any way to know whether changes to our lives will be good or bad; but learning from and rolling with the punches is the way to deal with whatever life puts in our path. Several of us have explained that being poz in 2010 doesn't mean death like in did back in 1985 or 1995. To give up on your future because of being positive is just as stupid as giving up on life if you have been diagnosed with diabetes or even cancer. You just need to learn more and seek medical help to keep you going down whatever path your were going down before you got this diagnosis.

unfortunately there's really little that any of us here can do to help you across the net, but give you comforting words. It's going to be up to you to do the work that needs to be done. if you really are thinking about suicide that much then you should quit talking to the crisis hotline and call to make yourself an appt with a therapist to seriously deal with whatever has changed you from being "ivy educated, promising" to considering suicide. And do it sooner rather than later because none of this will change until you take the steps to start the change.

I hope you take the needed steps soon and then let us know that you're getting the help that you really need to deal with your situation.
leatherman (aka mIkIE)


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

Offline MarkB

  • Member
  • Posts: 292
Re: Why So Unfair?
« Reply #36 on: May 10, 2010, 03:57:14 AM »
Thanks for all the response. I've been busy dealing with my depression and dialing the suicide & crisis hotline. I'm glad that I can find support here but actually I wish I had more support in my real life. I told my mom about my status and she's very supportive. Thank GOD!

In my time on this forum I have found that while its members are immensely understanding and supportive, they are also uncompromisingly honest and they will tell it to you like it is. As always, Matty the Damned has, in his own inimitable way, put his finger on the heart of the issue here. You speak of suicide, but also of wishing that you had more support in your life, and of your gratitude that your mother has proved to be supportive. That says to me that the thoughts of suicide are in fact not truly suicidal but another way of saying that you wish you could go to sleep for a while, wake up and find that all of this was a bad dream.

Sadly, you can't.

From what you you have told us, not only are you the victim of assault and rape but you are also having to deal with the fact that because of that, you are now HIV+. Those are huge issues and your present depression is completely understandable. But you do have choices. One of them is, as you say, to end your life; and in the final analysis no-one can take that choice from you. However, as Matty pithily puts it, it is also the last of the decisions you would ever be able to make.

Depression is not the time to decide on ending your life. Remember: "When in doubt, don't". You can always end your life another time if that really is your choice. But speaking personally, I don't think it is, or you wouldn't be reaching out for support as you are. All of the people I have ever known who took their lives either did so as the result of a long process of reflection, or on the spur of the moment. If you take your life in a moment of anguish then all of your future possibilities will have been be extinguished. Read some of the stories here. Look at what the women and men on this forum have been able to do with their personal and creative lives after becoming HIV+. As I said before, life is certainly changed; but it has not ended.

With respect, what I suggest you do today is go for a walk, reflect on the fact that you are where you are, and look at all of your options. Be ruthlessly honest with yourself. First of all, as others have said, recognise that you are depressed at this time. Seek professional help. Helplines are all very well and good, but at this time you need more than sympathy. What you need is a clearer understanding of your medical and psychological circumstances, and that is not going to happen if you don't go back to your doctors.

Your life is yours to end if you truly want to end it. But it is also yours to take up again, if you want to. You have said that you were raped and infected: but you don't have to let the bastard(s) who did that win twice.

Quote
I didn't report the rape to the police -- I didn't know why. Maybe I was trying to deny the truth.


Bottom line: the facts may be awful, but the facts are always your friend, and nothing is to be gained from "denying the truth". Can I suggest that you reflect on the possibility that whoever did this to you might do it again? That by going to the police you might be in a position to prevent what happened to you happening to someone else? Think about it.

Let us know how it works out.

Offline mecch

  • Member
  • Posts: 11,244
  • red pill? or blue pill?
Re: Why So Unfair?
« Reply #37 on: May 10, 2010, 04:12:28 AM »
I agree with Leatherman. Once you learn more about HIV you'll see its hardly a reason to off yourself.  You are probably associating all SORTS of issues to HIV that actually can and will be dealt with and have only a bit to do with HIV.
Get yourself some SSRI's (antidepressants) maybe, and or some anxiety meds, and make sure you get some professional to talk to.
Its great that you have your mom already to talk to!
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline ruralguy

  • Member
  • Posts: 141
Re: Why So Unfair?
« Reply #38 on: May 10, 2010, 11:49:05 AM »
WhySoUnfair-

Well I have to agree that testing pos was the worst shock of my life.  I told my partner and our 3rd sometimes play-mate immediately and they both were very important supports for me in that moment (and still...and we still have sex all the time and they're both negative).  I experienced 'anxiety attacks' and didn't even know what they were.  I do now!  All this happened about 10 months ago.  I went on meds pretty quickly, in September, and they have been totally effective and really without any side effects at all.  I take one pill when I first wake up in the morning and, most days, I don't even think about hiv.  I feel fine, I look fine, I do all the things I used to do.  But you never could have convinced me of this last June when I tested pos.  I was in shock and i didn't get out of it for a couple of months.

So here's my hints:
- give yourself some time to get used to this, it is a shock but the  shock will pass
- see your doctor, follow the routines on meds
- glad you told you mother and that she was supportive, this will be important to you and need only be a few people right now
- get Gallant's book:  101 questions about HIV
- read as you have been but be very careful of reading old info on the net....avoid reading stuff more than a few years old or it will drive you nuts and, in any case, the info is outdated
- do something nice for yourself, now, give yourself a treat of some sort, anything
- be aware that a lot of people around you love you just like they did before...don't forget this

Please come back here now and again and tell us how you are doing.  You'll get lots of support here, and a kick in the butt when you deserve it.  HIV will be part of your life but it won't BE your life.

Hugs. ruralguy
tested positive June 19, 2009
7/3/09 vrl 9000 cd4 - 300
8/14/09 cd4 - 350, 20%
started Atripla 9/14/09
10/5/09 vrl undetectable, WOW so fast!
12/28/09 vrl undetectable, CD4 - 615  27% cholesterol down, kidney function normal
4/26/10 vrl undetectable, CD4-600, kidney and liver numbers normal
9/9/10 vrl undetectable, CD4-685
1/3/11 vrl undetectable, CD4-700
all 2011 and Jan 2012 visits vrl undetectable CD4 ranged from 715-645
5/7/2012  vrl undetectable, CD4-615, all liver, kidney, lipids, heart functions, etc normal


On Atripla:  "Your mileage may vary"

Offline lusopt

  • Member
  • Posts: 61
Re: Why So Unfair?
« Reply #39 on: May 11, 2010, 07:40:06 PM »
Who said life is easy, who said life is fair....

You will get used to it, you will learn how to keep going, like we all did.
15/11/06: HIV-
28/10/08: HIV +
- No Meds -
18/11/08: CD4 -650 (.......)  / -17.500 VL
01/03/09: CD4- 540 (19,6%) / - 2090 VL
17/07/09: CD4 -603 (20,1%) / - 5040 VL
27/10/09: CD4 -627 (21,5%) / - 10.896 VL
25/03/10: CD4 -609 (23,9%) / -11.602 VL
12/09/10: CD4 -555 (........) / - 55.500 VL
21/04/11: CD4 -466 (17%)   / - 50.339 VL
01/10/11: CD4 -375 (19%)   / - 73.058 VL

Started, Epzicom and Sustiva
01/02/12: CD4 -298 (23%)   / - undetectable

Offline WhySoUnfair

  • Member
  • Posts: 69
Re: Why So Unfair?
« Reply #40 on: May 11, 2010, 08:15:38 PM »
thank you again all my friends. with all the information here and there, now I realize that we will have a relatively normal lifespan. but i'm still so worried about all the HIV associated diseases such as liver failure, heart attack etc. also, rates of depression in people with HIV are as high as 60%!

I'm so sad cos I need to plan my life again. I want to become a world citizen but I will not be able to work in many countries because of this virus......

we have never cured any virus in human history but let's hope for the miracle!

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Why So Unfair?
« Reply #41 on: May 11, 2010, 09:25:13 PM »
A belated welcome to the forums.

And take heart.   

Consider the variola virus. ... (You may know it better as smallpox. ) ... It killed somewhere between 300 and 500 million people in the 20th century alone.

Until it was wiped out in the late 70's.



You are still young -- you can still be a world citizen.  And treatment will likely change as much or more in the next 15 years as it has since 1995.

Be well
Assurbanipal
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline WhySoUnfair

  • Member
  • Posts: 69
Re: Why So Unfair?
« Reply #42 on: May 12, 2010, 11:49:01 AM »

Consider the variola virus. ... (You may know it better as smallpox. ) ... It killed somewhere between 300 and 500 million people in the 20th century alone.

Until it was wiped out in the late 70's.

You are still young -- you can still be a world citizen.  And treatment will likely change as much or more in the next 15 years as it has since 1995.


we never cured the smallpox virus in our history, but this disease was eradicated in 1979 after people using vaccine for almost 200 years.

So sad, does it mean we will carry HIV forever?

Offline WillyWump

  • Member
  • Posts: 7,100
  • 1DPxR156NnouErf4f51CsCMubMYw84j5Kv
Re: Why So Unfair?
« Reply #43 on: May 12, 2010, 12:11:21 PM »

So sad, does it mean we will carry HIV forever?

This is a distinct possibility. But it doesnt mean HIv will kill me or you. The meds can keep the virus at bay indefinately. Once you are UD you've pretty much got it under control where it cannot harm you. People are living perfectly normal lives with HIV, some for more than 20 years or so.

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Assurbanipal

  • Member
  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: Why So Unfair?
« Reply #44 on: May 12, 2010, 12:14:18 PM »
Well, if you are looking for individual cures, let me give you another example -- the "German patient"

This was a man with HIV who, due to other health problems, required a bone marrow transplant.  His doctors looked through the registry of bone marrow donors to find one with bone marrow that would produce tcells that could fight his strain of HIV.  They then (through chemo) killed off his existing bone marrow, transplanted the new bone marrow, and appear (several years later now) to have effected a cure.

Now clearly this is not a treatment that will be common (killing off the existing bone marrow is very dangerous in and of itself). 

But what this treatment shows is the way that our incremental knowledge of how HIV works at a cellular and on a genetic basis is accelerating the pace towards finding a cure.

You know, a few years ago there was a statement floating around that really captures the case for optimism for future treatment in HIV and a host of other areas.

 "90 percent of all scientists ... are alive today."

It's tough to get your head around your new circumstances.  But medicine has and continues to improve.  As a young, recently infected person who has access to western medicine, HIV can be a very manageable disease ... if you choose to manage it.

Be well
A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline WhySoUnfair

  • Member
  • Posts: 69
Re: Why So Unfair?
« Reply #45 on: May 12, 2010, 12:21:37 PM »
People are living perfectly normal lives with HIV, some for more than 20 years or so.


Thanks for the reply. Well, it's hard to define "normal". For me, my life will never be normal again. I keep thinking about HIV all the time. Like I said, I want to be a world citizen, I want to work in different international cities here and there, but so many countries don't issue work visas to HIV+. So sad.

Even after 20 years, I will be still in my 40s. For me the best time in one's life is from 25yo to 45yo. I'm not ageist, I just think that's the time you gain all sorts of life experience. But now, everything is so different for me.

Offline WillyWump

  • Member
  • Posts: 7,100
  • 1DPxR156NnouErf4f51CsCMubMYw84j5Kv
Re: Why So Unfair?
« Reply #46 on: May 12, 2010, 12:36:48 PM »

For me the best time in one's life is from 25yo to 45yo. I'm not ageist, I just think that's the time you gain all sorts of life experience. 


This may not be exactly what you want to hear right now but HIv will now provide you with different life experiences, not all of them the least bit bad. HIv has changed me as a person, i think it has made me a better person. I am now more in tune with other's people's suffering, I reach out to help when I can now, whereas before I never reached out. This may sound weird but HIV has made me a more tolerant and loving person, which is a good thing. Do I wish I wasnt Poz? Sure I do. But there's nothing I can do it about now so I welcome the good affects HIv has had on me.

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline findingaway

  • Member
  • Posts: 22
Re: Why So Unfair?
« Reply #47 on: May 12, 2010, 06:04:41 PM »
I was raped in Denver, it was heart breaking and I felt like I was incredibly weak. I didn't report it either, its crazy hard to say something like that because it is like you are having to relive it over and over again. And for you its worse, I don't doubt it. I am recently pos as well, as in within the past three weeks and I don't know how to feel. Its screwed up and all I can ask some days is why. I am the same, I was educated from an amazing school, I was honor roll, involved in numerous groups, fraternity boy as well and received numerous awards and scholarships. I was wanting to go get my masters and work in politics, but honestly why now would I do that, who would hire me, as HIV has a stigma to make me have no morals and be a slut. The fact is the virus doesn't discriminate and anyone can get it. People are the ones that discriminate because they don't understand everything. and that is worse. I hope for the both of us and everyone else on here that something will happen where life continues to get better and this disease becomes like polio and just gets defeated. Its not the same type of thing but i am holding on to that it could happen. because I don't want to have to go through this as I am sure no one does

Offline Hellraiser

  • Member
  • Posts: 4,136
  • Semi-misanthropic
Re: Why So Unfair?
« Reply #48 on: May 12, 2010, 06:09:31 PM »
we never cured the smallpox virus in our history, but this disease was eradicated in 1979 after people using vaccine for almost 200 years.

So sad, does it mean we will carry HIV forever?

Actually there was a concentrated effort in the 70s in particular to eradicate the smallpox virus and now it exists in a laboratory setting only.  By eradicating it we have essentially freed our race of this virus completely.  Smallpox is nothing like HIV however, it runs it's course in roughly a month and either kills you or doesn't.  If you would like an interesting read on the smallpox virus and the eradication effort go read "Demon in the Freezer" it's quite enlightening.

Offline WhySoUnfair

  • Member
  • Posts: 69
Re: Why So Unfair?
« Reply #49 on: May 12, 2010, 08:33:07 PM »

I was wanting to go get my masters and work in politics, but honestly why now would I do that, who would hire me, as HIV has a stigma to make me have no morals and be a slut. The fact is the virus doesn't discriminate and anyone can get it. People are the ones that discriminate because they don't understand everything. and that is worse. I hope for the both of us and everyone else on here that something will happen where life continues to get better and this disease becomes like polio and just gets defeated. Its not the same type of thing but i am holding on to that it could happen. because I don't want to have to go through this as I am sure no one does

We are about the same age. I totally understand your feelings. HIV is an STD for most cases in developed countries and most ppl think it's a "whore disease" -- why? maybe nowadays all the HIV prevention commercials are about "safe sex"? My shrink told me it's very hard to catch HIV and she's seen lots of ppl who never practice safe sex keep coming up neg. I told her maybe GOD doesnt love me cos I always have safe sex but I was just raped and infected. I think maybe I have a weak immune system -- is it true poz have weaker immune systems compare to neg before the diagnosis? but HIV is attacking our immune systems right?

It's so harsh to accept this bitter fact and it's even more difficult to live with it. My confidence is below ground zero and I have to plan my life again. let's stay strong and I will PM you.

Offline Boze

  • Member
  • Posts: 477
Re: Why So Unfair?
« Reply #50 on: May 12, 2010, 08:50:00 PM »
WhyUnfair,

If I may pipe up as a fellow recent discoverer (about 40 days ago). At first I was pretty bummed out but as I researched the issue in-depth my outlook has significantly brightened. Here's why

1. The most important thing (imho) is finding out early and getting treatment before the virus damages your body. If you do that, the scientists now believe that your lifespan will be equivalent to HIV- people. And that's assuming current drugs...

2. Which brings me to the next point. I actually believe that with all the breakthroughs that are happening, something new (i.e. game-changing) will come out sooner or later. We've come a long way in the last 15 years - where will the next take us? The pace of technological change in today's world is astounding - but it's happening on a level we can't visually observe. 20 years ago we didn't have mobile phones, internet or HAART. Why assume that research will just stop now?

3. You mentioned wanting to work and travel in different countries. Which ones? Are you sure they don't allow HIV+ people? Both US and China lifted the ban JUST THIS YEAR.

Anyways - while I definitely sympathize and commiserate your situation, I think there are many worse things that could happen to us.
==========
Aug08 - Seroconversion
Mar10 - Diagnosis; cd4 690 - VL 19,000
Apr10 - cd4 600
May10 - VL 4,500
Jun10 - started Atripla ; VL 113
Jul 10 - UD vl, CD4 590
Aug 10 - UD, CD4 810, 52%
Nov 10 - UD, CD4 980

Offline WhySoUnfair

  • Member
  • Posts: 69
Re: Why So Unfair?
« Reply #51 on: May 13, 2010, 10:11:55 AM »

3. You mentioned wanting to work and travel in different countries. Which ones? Are you sure they don't allow HIV+ people? Both US and China lifted the ban JUST THIS YEAR.


I think there are still more than 50 countries around the world that restrict the entry of foreigners who are HIV+ such as Russia, Mid East countries, ect. But the travel part is fairly easy, I don't think the immigration officers in any country will do a blood test at the airports.

China only lifted HIV VISITOR ban. However, if you want to work there, you have to pass the medical checkup and they will not grant a work visa to HIV+ -- I heard this from my friend who is working there.

Even some 1st world countries such as Australia, Belgium, New Zealand, Singapore also do not grant work visas/ immigration visas to HIV+.

Offline ElZorro

  • Member
  • Posts: 535
Re: Why So Unfair?
« Reply #52 on: May 13, 2010, 10:40:16 PM »
I'm very sorry to hear about your diagnosis. I'm probably not in a great place to offer advice or consolation, because I too have just started to deal with this virus and I find myself dwelling on it on a regular basis. I can tell you, though, that from the posts that I continue to read on this site, you've come to the right place to seek advice and support and to find people who are willing to listen and to offer encouragement.

I wanted to chime in though, because I have a son in college (your age) with just as much promise as you have and it concerns me to hear that you are having thoughts about suicide. I hope you will listen to the advice of the folks in this forum and give yourself time to adjust to what has happened before electing for a "permanent solution to a temporary problem".

I realize that it has to be a personal decision, but I also hope that you will rely on the advice of your doctors in treating this virus. I'm a software architect by trade (meaning I don't know jack about medicine) so I have to trust the expertise of my doctors and the advice of those more experienced than I am with respect to being positive. There are good people out here who have been through things that you and I will never have to worry about and we can learn from them. Heed their advice, follow the links they post, and continue to educate yourself.

When I was infected last summer, my doctor wanted me to start treatment right away despite the fact that my CD4 was "good"; her recommendation was based on the level of the viral load as that is apparently what is a concern for doing damage. 

I did some research and learned that some folks can go years without needing meds. I also read about mutant strains that were resistant to all meds, and about the side effects that people on meds experienced.

I was convinced that:

a) I was going to be one of those folks who would never need meds; I could do it myself
b) If I couldn't do it without meds, I would have some rare mutant strain that had never been heard of before that no meds could treat
c) If I started meds, I would suffer ALL of the side effects forever

My doctor let me take my time because as she said "you need to be ready". After four months, the VL barely dipped. Obviously I wasn't going to be able to beat it on my own. Resistance testing showed that I was a candidate for Atripla. That only meant I was going to spend the rest of my life being miserable from side effects or I was going to screw myself by missing doses and developing a resistance that I'd read about.

The first time I actually cried was when she handed me the prescription for my meds and I had to face how my life had changed and how my body had failed me in curing itself. But, I started the meds and have taken a pill every night between 9p and 12a for the last 5 months. As my numbers show, the drugs are miraculous. The only side-effect I ever suffered was waking a couple times in the middle of the night and feeling a little dizzy. After a couple days (and still): no side effects.

I understand how you feel about dating and future relationships; I'm there too. I continue to make up excuses for turning down dates because I'm sure that I'm going to get hurt when I end up disclosing my status. As you said, "who wants to date a guy who is HIV+?"

The truth is, though, I suspect there will come a day when I've accepted this virus and am able to get past the issues that I am creating in my own mind/life. I believe that because I can tell from reading what has been posted here that most everyone out here has been where we are and they have weathered those storms and come out on the other side.

I hope you will put some faith in the experience of the people out here and in your doctors and give yourself a chance. I truly believe "they" are going to cure this disease. You're half my age; that gives you twice as much a chance of still being here when they do!




Offline mecch

  • Member
  • Posts: 11,244
  • red pill? or blue pill?
Re: Why So Unfair?
« Reply #53 on: May 14, 2010, 12:28:14 PM »
Thanks for the reply. Well, it's hard to define "normal". For me, my life will never be normal again. I keep thinking about HIV all the time. Like I said, I want to be a world citizen, I want to work in different international cities here and there, but so many countries don't issue work visas to HIV+. So sad.

Even after 20 years, I will be still in my 40s. For me the best time in one's life is from 25yo to 45yo. I'm not ageist, I just think that's the time you gain all sorts of life experience. But now, everything is so different for me.


You really are looking at the dark side.  First of all, your life is yours, and thats normal. I am visiting a friend in germany this week. Two of our friends had horrible diseases and have died in their 40´s - nothing to do with HIV.  Debilitating awful ends.  That was normal. Normal for us to have losses, normal for them to be sick and die.

Not that many countries have bans for HIV positive people. Check. And the ones that do, did you ever plan on working there?  You are fearing more restrictions to your life because of HIV than you will experience.

Finally remember that is 2010, and think of all your advantages, I repeat, since you made it so clear - tall handsome intelligent and respected university degree.  Do you really think you are going to have a much harder time in life?  I think perhaps you should be only wondering about your sex life and your romantic life.  That may be a bit tricky but there should be NO reason someone really in love with you will say no to a relationship.  

I´ve been in ivy and post-ivy circles for 25 years. Only 2 years positive. In all those years negative I never witnessed any prejudice towards hiv+ gay people when it comes to friends and relationships. Never.

And now its 2010, theres good medicine, and attitudes are changing for stigma.  And you are an elite.  Your post is titled "why so unfair" and did you ever think how unfair it is for those who can´t access a high earning profession -- or aren´t so clever -- and who thus mayl aways live in precarious situations with HIV loaded on top?  I cant tell you how many times I´ve change jobs, professions and countries easily enough by showing my golden diplomas, being tall, good looking and clever.  I think eventually you should also count your blessings when you think about this blot on your self-perceived image of limitless freedom and access.  Partly its about youth, partly its about your education, and now HIV is going to make your perception of humanity a bit richer, I think.  Hope so.


« Last Edit: May 14, 2010, 12:34:11 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline WhySoUnfair

  • Member
  • Posts: 69
Re: Why So Unfair?
« Reply #54 on: May 16, 2010, 08:28:28 PM »

I think perhaps you should be only wondering about your sex life and your romantic life.  That may be a bit tricky but there should be NO reason someone really in love with you will say no to a relationship.  

And now its 2010, theres good medicine, and attitudes are changing for stigma.  And you are an elite.  Your post is titled "why so unfair" and did you ever think how unfair it is for those who can´t access a high earning profession -- or aren´t so clever -- and who thus mayl aways live in precarious situations with HIV loaded on top?  I cant tell you how many times I´ve change jobs, professions and countries easily enough by showing my golden diplomas, being tall, good looking and clever.  I think eventually you should also count your blessings when you think about this blot on your self-perceived image of limitless freedom and access.  Partly its about youth, partly its about your education, and now HIV is going to make your perception of humanity a bit richer, I think.  Hope so.


thanks for the wake up call. I've decided to live my life but my biggest concern now is how to continue to live life. I can't change the past but I have to make the most out of my future. I am worried a lot about side effects of the meds (I will go back to my doc in Aug), and making sure that they work. I am worried that my body might not respond to them well  --  my therapist told me it's very difficult to get HIV, so I think I may have a very weak immune system.

HIV is my concern, and all the screwed up stuff that comes along with. A lot of ppl on the forums here say they live their life like they always have, but did they really?  I want to stay strong and know that I can still do anything. I can't let this beat me, but I'm so overwhelmed.


The truth is, though, I suspect there will come a day when I've accepted this virus and am able to get past the issues that I am creating in my own mind/life. I believe that because I can tell from reading what has been posted here that most everyone out here has been where we are and they have weathered those storms and come out on the other side.

I hope you will put some faith in the experience of the people out here and in your doctors and give yourself a chance. I truly believe "they" are going to cure this disease. You're half my age; that gives you twice as much a chance of still being here when they do!


I'm so jealous of those who get this virus in their 40s/50s. i dont have enuf life experience to deal with disasters. I feel ok when I talk to my therapist, but I feel so lonely and helpless when I'm back home alone. it's too much !!

Offline leatherman

  • Member
  • Posts: 6,059
  • Google and HIV meds are Your Friends
Re: Why So Unfair?
« Reply #55 on: May 17, 2010, 12:22:23 AM »
I am worried a lot about side effects of the meds (I will go back to my doc in Aug), and making sure that they work. I am worried that my body might not respond to them well
to be honest, Ken, what you're doing with that kind of comment is what's called "borrowing trouble". If you'll read up on the meds, and the stats from the package inserts, you'll see that most patients don't have any side effects at all and few have lasting side effects (else these meds probably wouldn't have gotten FDA approval LOL). I mentioned to you once before that the meds of 2010 are NOT the meds of 1995. You won't be put on 4 pills of AZT every 4 hrs 24 hours a day to suffer anemia, you won't be put onto ddI to suffer from pancreatitis or peripheral neuropathy. You might have to suffer through a bit of nausea and diarrhea as you body not only adjusts to the meds, but also to the reduction of your viral load. You might even go through a bout of "immune system reconstitution", which through it means you'll be sickish it'll be because your immune system is actually recovering and getting better. (yes, getting sick in that way is a "good" thing LOL)

Personally, after just a touch of diarrhea for a couple days changing over to my latest regimen (reyetaz, norvir, truvada), after nearly 20 yrs of being on and off 15 different meds, I am now suffering no, none, nada side effects. So don't go borrowing trouble worrying about side effects. Statistically, you will probably deal with no lasting side effects, when you eventually have to take meds.

thanks for the wake up call. I've decided to live my life but my biggest concern now is how to continue to live life. I can't change the past but I have to make the most out of my future.
there is no "how" to continuing life; there only "is" continuing life. Many people ask me how I managed to get through losing not one but two partners. They tell me that I must be such a "strong" person. Ha! (that's a self-deprecating laugh there LOL) What was I supposed to do- crawl into a corner and cry until I died? No, I had to go buy groceries, feed the dogs, clean out my partners' closets of clothes, pay my bills, make funeral arrangements, visit my friends, go to work, etc. In other words, I continued living life (whether I wanted to or not. I really did want to just crawl into that corner; but life just wouldn't let me). And that's how YOU continue living life just like you were doing before this diagnosis. You go to work, talk to friends, pay bills, buy groceries, go out to the bar, ride a bike, go swimming, take another semester of classes, whatever it is that you were doing (unless you were wasting your life away beforehand, then I guess "continuing life" means you stay a wastoid. LOL) About the only difference now is you'll need to regularly check in with a doctor for lab work, and you'll need to eventually take daily meds. It's nothing more than millions of diabetics do every day and a LOT less than a cancer patient getting chemo and radiation goes through.

Maybe getting this diagnosis has caused to you face up to your own mortality finally. Well, in that case you've learned a valuable lesson early in life. the lesson is that Life is precious AND precarious and sometimes it can be frigging short; so enjoy every day the most you can, be kind to those around you, don't waste time and be productive. That's how you continue to live life.

my therapist told me it's very difficult to get HIV, so I think I may have a very weak immune system.
That is so not true! just like getting pregnant, it can only take getting exposed once

A lot of ppl on the forums here say they live their life like they always have, but did they really?
I know other people have been PMing you too trying to help and that comment is just rude to all of us. >:( Are you implying that we've been lying to you? Or that we're trying to lead you astray? Or do you just not want to believe us? If you want to continue acting like a victim and like this is somehow the end of your life, then go right ahead; but don't drag us into it. Many of us have been telling you over and over and over (ad nauseum) that being HIV is not the end of everything and you just seem determined to not believe us.

I'm so jealous of those who get this virus in their 40s/50s. i dont have enuf life experience to deal with disasters.
lordy! I know you're not listening to anything that I PM to you. ::) :D I was 28 when I was diagnosed; lost my first partner when I was only 30; and was in the hospital almost dying with PCP at 34. Do you think I had enough life experience beforehand to deal with those disasters? Shoot no! When I 45 and lost 3 homes in 3 yrs. do you think I had enough life experience to handle almost being homeless? Hell no! I was scared to death. Even though I had dealt with losing one partner to AIDS way back in 1994, I sure as hell didn't have enough "life experience" to deal with the pain of losing ANOTHER lover to AIDS in 2008. It's only been two years and I'm still dealing with that pain.

There's just no such a thing as "enough life experience" to get through disasters - getting through a disaster IS how you get life experience. Welcome to the real world.  ;)

I want to stay strong and know that I can still do anything.
exactly! You know what to do then ;) - consult a doctor (about treating the HIV, and improving your health overall) and continue living your life with work, school, family, firends, exercise, hobbies, adventures, etc.
leatherman (aka mIkIE)


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

Offline WhySoUnfair

  • Member
  • Posts: 69
Re: Why So Unfair?
« Reply #56 on: May 17, 2010, 10:39:58 AM »
you'll see that most patients don't have any side effects at all and few have lasting side effects.

I know other people have been PMing you too trying to help and that comment is just rude to all of us. >:( Are you implying that we've been lying to you? Or that we're trying to lead you astray? Or do you just not want to believe us? If you want to continue acting like a victim and like this is somehow the end of your life, then go right ahead; but don't drag us into it. Many of us have been telling you over and over and over (ad nauseum) that being HIV is not the end of everything and you just seem determined to not believe us.

I've been getting information and support here on the forums, I really appreciate all your advice and help and I swear to GOD I didnt mean to be rude!

I'm not naturally pessimistic, pls read these --
HIVers' life expectancy might be as much as 21 years shorter than for ppl not infected with HIV.
(http://www.poz.com/articles/hiv_survival_expectancy_761_17228.shtml)

The scariest thing for me is the HIV-associated premature aging -- HIVers will get Alzheimer's or cognitive motor disorder. I would overdose myself if that happened.
(http://nymag.com/health/features/61740/)

Offline leatherman

  • Member
  • Posts: 6,059
  • Google and HIV meds are Your Friends
Re: Why So Unfair?
« Reply #57 on: May 17, 2010, 12:27:26 PM »
I'm not naturally pessimistic, pls read these --
read this then
http://www.poz.com/articles/hiv_life_exectancy_survival_761_14989.shtml
or these threads
http://forums.poz.com/index.php?topic=21859.0
http://forums.poz.com/index.php?topic=27135.0

or how about this report from Feb 2010 (something a bit more current)
"Many patients diagnosed with HIV today will have normal life expectancies"
http://www.aidsmap.com/en/news/507F3477-660B-4D89-8527-DD915A1B339D.asp

all these articles talk about the inverse of the article you linked: not about how much shorter a lifespan might be for an HIV+ person, but about how the lifespan of living with HIV has increased through the years thanks to the meds, and is continuing to increase.

But all these reports still are not accurate. Those are just snapshots of when those reports were done. Every day that the people here (who post in the Long Term Survivor forum), the HIV+ people living with HIV for 15 or 20 yrs, and even myself continue to live another day, we are changing those statistics. We won't really know "real" data about how long HIVers will live until the LTSs start to pass away. Right now it looks like taking the early meds resulted in at least 20 to 40 more years of life. (I say "at least" because it could be 50-70 yrs by the time people taking meds from the early 90s die to know just how long those meds kept people alive). We won't have data on how long Atripla et al might extend the lifespan until people that began meds around 2005 and later start passing away. That's why that more current article says an HIVer should have a normal lifespan - every day HIVers are staying alive and proving that truth.

No one can predict how long you will live (whether you had HIV or not). My dad died at 62 (heart attack) and he didn't have aids. my partner's dad died at 46 (heart attack/stroke), his mom at 56 (cancer) - they didn't have aids.  Right now the average lifespan of an American male is 75. that report says that a 20 yr old HIVer should live to be 69.4. By those stats, that 20yr old HIVer will "perhaps" die 5 yrs early not 21.

Regardless of all those numbers, because every day that snapshot changes as HIVers live longer, what it means is you have a choice. You can freak out in your 20s about dying, or you can live your life and let death come whenever it comes. Other people would usually tell you right now about being hit by that mythical bus. However, having nearly been struck by lightning three times in the summer of 1995, I learned that, statistically, you're more likely to get hit by lightning and die than be hit by a bus. LOL In reality though, we're all much more likely of dying of cancer or heart failure than from lightning or the bus. My point is everybody dies and no one can predict how, so it's just not worth worthing about unless you are currently very sick, or you're out playing in a thunderstorm.

Of course YOU yourself can do things to postpone your death. Eat healthy, exercise, stay away from booze and illegal drugs, take your meds as prescribed, don't smoke, etc. If you don't do those things you might find yourself dead at 50, not because of HIV, but because of high blood pressure or high cholesterol led to a heart attack. (By the way, a pessimistic attitude leads to an earlier death too)

HIVers will get Alzheimer's or cognitive motor disorder.
No, that's incorrect. HIvers CAN get those problems. Not will as it's not guaranteed. Just like side effects, those things happen to a certain percentage, but not to everyone. I, for one, have none of those problems. Of the over-45 HIV crowd that I've met at my ASO (about 25 of us) only one person has those problems.

I'm not naturally pessimistic
I respectfully disagree. You are reading worse case scenarios into everything: I'm going to have side effects, I'm going to have cognitive problems, I'm not going to live to 40, I'm going to have bone less, I'm never going to fall in love.

I've been poz for over 25 years and was diagnosed with AIDS over 18 yrs ago. I don't have side effects now, don't have cognitive problems (ok, no comments from the peanut gallery on that one  :D ;D ). I'm 48 and already lived 14 more yrs than the doctors told me and am healthier than ever. I've got no bone loss. I already fell in love a second time and wouldn't turn it down if it came around a third time. (don't scoff! there are people here who have had and lost 3 partners, so it's possible. I used to not think love would happen again; but since it did once, I've got hope that it just might again. ;D ) all of that is my life right now, after having started on those early meds, developed resistance to many meds, suffered side effects and was hospitalized twice with OIs.

It's 2010 now, you're in your 20s and they're predicting that you'll live out a normal lifespan, and more than likely you can do that with little or no side effects. If I can have nearly that same scenario having started out 20 yrs early when less was known and meds weren't as good, and not be worried, then shouldn't you be even more optimistic about your future?

I know it's tough at first putting all this into perspective; but as many of us have told you, being diagnosed HIV is not the end, although I will admit it can be a big ol' bump in the road. You need to refocus and reframe the issues in front of you. Instead of worrying about the end of your life, be more pro-active about living and taking care of your life right now. Read the lessons here (http://www.aidsmeds.com/articles/Introduction_4702.shtml), learn about the meds and the conditions for starting them, and consult with your doctor. Have you had a cd4 count or viral load test yet? For all you know, your health is still incredible and you have years before even starting meds. Or you could be a long-term non-progessor. Or you might need to start taking meds soon (remember, meds are our friends LOL the enemy is HIV), which would only help you to feel better and stop HIV from doing anymore damage to your immune system.

There are so many more things more important to worry about today like paying bills and what to fix for dinner tonight. Quit being a negative nelly and start looking at the bright side of the life you have before you, instead of already worrying about the end. ;) :-*
leatherman (aka mIkIE)


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

Offline tommy246

  • member
  • Member
  • Posts: 435
Re: Why So Unfair?
« Reply #58 on: May 17, 2010, 01:07:34 PM »
Thanks for the reply. Well, it's hard to define "normal". For me, my life will never be normal again. I keep thinking about HIV all the time. Like I said, I want to be a world citizen, I want to work in different international cities here and there, but so many countries don't issue work visas to HIV+. So sad.

Even after 20 years, I will be still in my 40s. For me the best time in one's life is from 25yo to 45yo. I'm not ageist, I just think that's the time you gain all sorts of life experience. But now, everything is so different for me.

The poster doesnt mean you will only live for twenty years or so he means there are people who have been living with hiv for that long. With the treatment of today we will live a full life span the modern meds of today are amazing im on atripla 1 pill a day no side effects . The horror stories that you read about meds are the old ones which were very toxic that is no longer the case.
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline WhySoUnfair

  • Member
  • Posts: 69
Re: Why So Unfair?
« Reply #59 on: May 23, 2010, 12:16:20 AM »
I'm going to echo what was just said.  When you are first diagnosed you mourn for yourself for a while.  This is for good reason as an era of your life is over.  Your life will be slightly different now, but not unbearably so.  You have a minor cross to bear, but you're not carrying it alone.  All of us here have done the same for a while.  Generally after the intial shock of testing positive people either go one of two directions and settle into a "life goes on pattern" or some people become a lot more morose and it weighs on their mind heavily.  This is how I've observed it anyway.

We all think about it every once in a while, but the preoccupation fades as it's just another part of yourself.  I think given some time you will not let it get you down quite so much, but it is definitely something you will need to adjust to.

Hi there,
Not sure how long you have been infected and not sure how you cope with everything. I'm still struggling! I feel I'm damaged -- it's really from heaven to hell. I dont know why life is so harsh! I will never be able to find a relationship! I think I'm the other kind of person you described -- I'm becoming a lot more morose! I just cant stop thinking about HIV. I feel so depressed.
everytime when I read all those side effect news, I just want to overdose myself immediately. we all know there is no cure and I'm so scared!

Offline Rev. Moon

  • Member
  • Posts: 3,782
  • Smart ass faggot ©
Re: Why So Unfair?
« Reply #60 on: May 23, 2010, 12:39:17 AM »
Hi there,
Not sure how long you have been infected and not sure how you cope with everything. I'm still struggling! I feel I'm damaged -- it's really from heaven to hell. I dont know why life is so harsh! I will never be able to find a relationship! I think I'm the other kind of person you described -- I'm becoming a lot more morose! I just cant stop thinking about HIV. I feel so depressed.
everytime when I read all those side effect news, I just want to overdose myself immediately. we all know there is no cure and I'm so scared!

You are not damaged.  You have HIV; HIV does not have YOU.  It takes a while for some (and perhaps some one on one therapy to exorcise thought like the ones that you are having), but there does come a time when you move forward. 

Don't focus on side effects (whether short or long term), focus on the fact that you are on the right track to feeling better.  It is 2010; things are much better than just a decade and a half ago. 
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline vt5john

  • Member
  • Posts: 23
  • to infinity and beyond
Re: Why So Unfair?
« Reply #61 on: May 23, 2010, 03:33:53 AM »
4 years ago my 15 years old nephew came home from school complaining of chest pain.  The mother told him to rest.   He went to his room and watched the Lakers on TV.   4 hrs later he walked to the kitchen and once again told his mom that he didn't feel good and decided to go to sleep.   Mom walked him to his room when all of a sudden he fell on the floor, went into convulsion twice and died.   He was an active, full of life, good looking, straight A's student slated to go to Harvard.   Turned out he had a fribulating heart condition.   Life can be so unfair.

A few days after his funeral, his then 17 year old brother went to play Golf with my sister.  All of a sudden he fell on the ground and like his brother went into convulsion. Quickly my sister gave him CPR which saved his life and called for an ambulance.   Turned out he has the same genetic heart condition as his dead brother.   The doctor put a permanent defribulator under the skin of his chest at the age of 17.   Life can be so unfair.

Two years ago a dear friend of mine whose been battling diabetes for as long as he could remember told me that he wanted to fulfill his lifelong dream i.e: to travel and see the world.   He sold his business and made a safe and secure financial arrangement that will support his new lifestyle for the rest of his life.   For a long time he's been having these wounds on his toes (both feet) that never heal.   As the condition gotten worse, the doctor finally had to cut off his toes.   The last time I talked to him, he told me that now both his big toes are getting ulcerated and will probably have to be cut off as well soon.   At the age of 48, he now uses crutches to move around and still travelling and seeing the world.   Life can be so unfair.

Last week my adopted son came home from college during spring break.   Whilst here, he usually visits his high-school buddies and just hang out.   The other day he called me from his best friends house (Mike) to see if I could pick him up there.  I was so shocked to see this kid (Mike) that used to be so funny and full of energy looking so thin and frail as if life has been sucked out of his body.   Later my son told me that Mike has leukemia.  At the age of 19, this kid will now have to undergo several painful and toxic chemotherapies in the following months and to be honest what is his chances of surviving leukemia.  Life can be so unfair.

I was diagnosed HIV+ last March.  Needless to say, the news was devastating and surreal. Why me??  I couldn't help but thinking of the worse.    But I refused to fall into depression and feeling sorry for myself too long.   I decided to get a good grip on reality and found out what this disease is all about and how to manage it.    I understand that it is the hand that I'm dealt with and I must take control of it.  It hasn't been that long since I found out.  I'm taking baby steps and learning new things every day.   I'm counting my blessings and my good fortune.  I don't know what the future hold but I have a feeling it's going to be fabulous!!!.  Life has been good and fair to me.  




« Last Edit: May 23, 2010, 03:46:40 AM by vt5john »
Apr 2009 - noticed red dots on my body
Feb 2010 - Shingles on my chest - panicked!
Feb 20, 2010 - Found out :-( :-(
Feb 23, 2010 - CD4 311 22% VL 29,000
Mar 06, 2010 - CD4 251 15%
Mar 06, 2010 - started meds: D4T 3TC NVP
Apr 05, 2010 - stop NVP (Hypersensitive)
Apr 05, 2010 - Switched: D4T 3TC Kaletra
May 14, 2010 - Switched: Tenofovir-300 3TC Kaletra
June 10, 2010 - CD4 342 19% VL <40
July 13, 2010 - Reduced: Tenofovir-200 3TC Kaletra
Sept 21, 2010 - CD4 423 23.1% VL < 40
Oct 15, 2010 - Dr. Concerned with high Cretinine lvl - dropped Tenofovir-200
Oct 15, 2010 - 3TC Kaletra
Jan 17, 2011   - CD4 498 23.36%

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Why So Unfair?
« Reply #62 on: May 23, 2010, 01:18:39 PM »

I will never be able to find a relationship!


Unless you've also been infected with the Jackass Virus, there's no reason to believe that hiv will prevent you from finding someone who loves you and who you love in return. It may seem impossible or improbable now, but if you let go of this "nobody can ever love me again" mindset, the possibilities are endless.

Sorry to be blunt, but the only thing feeling sorry for yourself is going to accomplish is to turn you into a sorry individual. And that will stop you finding love long before being hiv positive will.

You need to understand that this kind of self-loathing is actually rather offensive to many of us who are hiv positive and yet still get on with our lives - and have loving relationships, not only with PLWH but also PNLWH. This may be hard for you to swallow, but that's the way it is, like it or not.

If you cannot let go of this self-loathing and self-pitying frame of mind - and soon - I implore you to find yourself a competent therapist to help you out. Otherwise, you don't stand a chance and hiv isn't going to be the true cause of your demise.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



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

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

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

Offline HippieLady

  • Member
  • Posts: 219
Re: Why So Unfair?
« Reply #63 on: May 23, 2010, 02:54:26 PM »
Hi....  I know you are going through hell right now.  I know what it feels like to look in the mirror and see ugliness under the surface.  I know what it feels like to think about HIV 24/7 and be scared that I'm going to die.  It has been less than 30 days since I found out I was HIV+.  I'm still right there in the thick of the fog.

BUT....unlike you I am not letting the fog hold me down.  It will only be as heavy as you let it.  You need to find some way to lift yourself out of it.  Please talk to someone!  Anyone you think will listen to you and help you.  Everyone one here has stood in this same place.  Everyone here, to some degree, had the same thoughts and fears.  Please reach out to someone!  You can overcome this and go on to do great things but not without hope. 

I wish you the best of luck and I hope you find someone to talk to...it really sounds like you need that.
~Katie~
Diagnosed HIV+ April 30, 2010

Current CD4-638  VL-UD  11/2013

Offline Hellraiser

  • Member
  • Posts: 4,136
  • Semi-misanthropic
Re: Why So Unfair?
« Reply #64 on: May 24, 2010, 01:38:59 AM »
Honestly I think the best thing for you (since we don't seem to be making much head way online) would be to go to a poz support group, or if you have any positive friends have a rational dialogue going on with them about your worries and concerns.  Dealing with HIV is not easy, doing it alone is almost impossible.

Offline WhySoUnfair

  • Member
  • Posts: 69
Re: Why So Unfair?
« Reply #65 on: June 14, 2010, 11:15:44 AM »
Dr. Paul finally replied my email, he must have been very busy.
 ----------------------------------

Dear :

Thank you for your message and support.

Information about our research progress is available at
http://www.uth.tmc.edu/pathology/research/circ/hivtherapyandvaccination.htm.
An educational video that summarizes our anti-HIV vaccine approach is
available at http://www.youtube.com/watch?v=DdLkqZ0vAx4. A group of young
professionals has formed a non-profit foundation to support our research and
development mission. Further information about the activities of the
foundation is available at www.endhiv.com.

We will do all we can to expedite the research. As soon as the preclinical
regulatory milestones needed to initiate human clinical trials are in place,
the clinical trial enrollment criteria will be posted publically.

Thank you again for your support.

Sincerely
Sudhir Paul

Director, Chemical Immunology Research Center
Professor, Department of Pathology
University of Texas - Houston Medical School
http://www.uth.tmc.edu/pathology/faculty/faculty-Paul-Sudhir.html

Offline wtfimpoz

  • Member
  • Posts: 418
  • Let's make biscuits!
Re: Why So Unfair?
« Reply #66 on: June 29, 2010, 03:54:06 PM »
Whysounfair, I'm in a position similar to you: young, privileged, educated at "good schools", and never thought the disease would hit me.  Ok, probably not quite so young or privileged, and my degree is from a "public ivy", and yeah, I had a lot of sex.  But I did it "right".  I didn't skip condoms, I didn't even entertain the prospect.  I thought the disease was the exclusive domain of methamphetamine addicts and the extremely ignorant or reckless, and I think of all the more promiscuous people I know, and all the stupid, stupid things they do, and I too think that God must hate me to have singled me out for this disease.  Last month, my biggest concern was the downstairs neighbor in my condo and a lack of "prestige" in my job.  Now, I'm scared whitless of cognitive decline, questions about my future, etc.  On an emotional level, I understand exactly what you're going through and why frequent calls for you to calm down are so terribly ineffective.  Things aren't as rosy as people want to tell you.  You know this.  You're not stupid, you've googled "HIV and aging" by now, you've probably read enough terrifying tales to last you a lifetime.  When you've spent your entire lifetime planning for the future, being told "learn to live in the now" isn't a useful coping mechanism.  So I'm going to try something a little different than the typical "the meds are really good and you're not going to get sick for long time and you've caught it early and you MIGHT not get AIDS dementia so stop worrying about the future". 

You need to calm the f**k down.  Seriously, calm the f**k down.  You keep calling the suicide hotline, but honestly, why contemplate immediate suicide over fears of a disease that will shorten your lifetime?  Have you ever heard the phrase "cutting off your nose to spite your face"?  It applies to you buddy.  I understand that your future looks so much more bleak now, but you're losing sight of what is really at hand and you're becoming irrational.  Suppose someone told you "you've got a rare incurable cancer.  It will kill you in 20-40 years.  It will greatly decrease the quality of your life at some point.  Or it might not.  There might be a fix for everything, and the disease could become as pedestrian as high blood pressure.  Or it might not.  We really can't predict the future".  Would you honestly be THIS devastated?  I don't think so.  I've known a few people who've been given that, or similar, scenarios by their docs.  They don't fall apart.  They might blow their 401ks on skydiving lessons or start smoking weed again, but they don't become inconsolable emotional wrecks, because they know what they're going to miss is life, and losing their minds would just cause them to miss even more of life.  Getting an HIV diagnosis...or any similiar diagnosis..reminds us of how fragile our lives are, but it is't a reason to prematurely end those lives, either literally or indicrectly through despair.  Its a reason to drop out of corporate law, not drop out of life.  Its a reason to re-evaluate what you were doing.  You wanted to be a "world citizen".  Is this really something you want to do, or is it something that sounds impressive when you tell it to people?  This is a really good time to figure that out.  You're letting the social stigma attached to this "whore's disease" color your reaction and make it much, much more hysterical than it should be.  The great tragedy is that your reaction is only making things worse...only making you lose out on life even more.  For someone who should understand better than most that this is not, in fact, a "whore's disease", and who should have the intelligence to reduce life situations to their components and act logically, this is an unacceptable mistake.  Stop making this mistake.     

And stop reading about advances in potential HIV cures.  You're setting yourself up for disappointment there.  It seems like every 9 months they come out with some "cure on the horizon", with no mention of what happened to the previous impending cure.   The only real progress that seems to have been made is the drug cocktail, with all subsequent medical innovations being variations on that theme.  Its not really a good idea to make decisions or attach emotional well being to whichever PhD your news outlet of choice is showcasing this week.  Be greatful that its not 1985.  Be greatful you're not part of the huge chunk of this country who isn't going to miss out on medical treatment.  Be greatful that you didn't get hit by a bus driving home from your positive test result.  Stop taking life for granted.
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Why So Unfair?
« Reply #67 on: June 29, 2010, 10:29:52 PM »
iwtf, "Ivy educated" or not, have you not heard of internet paragraphs? My eyes hurt. Big blocks of text hurts one's eyes and I, for one, would be happy if you wouldn't do that.

Condoms are a girl's best friend

Condom and Lube Info  



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

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

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

Offline dtwpuck

  • Member
  • Posts: 1,013
  • дано мне тело, что мне делать с ним?
Re: Why So Unfair?
« Reply #68 on: June 30, 2010, 06:11:04 AM »
I read through this whole thread.  "Why"... the last post probably says it best.  Calm down.  Your life hasn't ended.  Get therapy. 

And, please, we so-called 'ivy-educated' people also get diseases, die, make mistakes, are victims of crimes, and can live through it as well.  I'm uncomfortable with the implication was educated people somehow should know better well enough not to make mistakes like getting drugged, fucking without a condom, or whatever comes to mind.  We are all human beings.  Human beings make mistakes.  Human beings experience tragedies.  Human beings learn to cope.  We are just like everyone else.  We are common.

I've been poz for close 15+ years or so.   Seroconverting taught me a lot of lessons.  But, mostly, my life hasn't changed much because of the disease.  I still have a great career.  I have been in several relationships, often with negative partners, none of which failed because of my status.  Yes, I might die someday because of the disease.  But, it's far more likely that I will have a heart attack.

Please get yourself some help.  It's clear that you lack the skillset to manage seroconverting on your own.  (not sure anyone can)  The Internet is a great place to vent, and this forum is here to help.  But you might consider some intensive professional compassion to help you through this crisis.


Best of luck to you.  Scott
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

 


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.