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Author Topic: Why So Unfair?  (Read 12964 times)

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Offline Boze

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  • 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

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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

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  • 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

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  • 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 40īs - 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.  

Iīve 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 canīt access a high earning profession -- or arenīt so clever -- and who thus mayl aways live in precarious situations with HIV loaded on top?  I cant tell you how many times Iīve 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

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  • 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 canīt access a high earning profession -- or arenīt so clever -- and who thus mayl aways live in precarious situations with HIV loaded on top?  I cant tell you how many times Iīve 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

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  • Posts: 5,924
  • 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

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

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: 5,924
  • 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

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

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

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  • Smart ass faggot Đ
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

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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

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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

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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

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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

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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

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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

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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

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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.

 


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