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Author Topic: The HIV Mindset  (Read 4787 times)

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Offline zeb

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The HIV Mindset
« on: May 20, 2007, 09:24:58 AM »
Hi you all,

I've some strange mental stuff going on here and I really would appreciate some advice or encouragement.

I've discovered to be poz in dec. It seems I'm poz now for 1.5 years. Of course I was/am scared and anxious. I mean: I still can recall the Freddy Mercury and Rock Hudson images, to mention some...

My doc tells me not to worry too much, it's a manageable condition. He says: you will live a long and healthy life as long as you do what I tell you to do (i.e. live a normal regular and healthy lifestyle and take meds when the time is there), so keep on saving for retirement (I'm 38 yo now). I also spoke with other folks who said: Well nowadays the people who die of AIDS in The Netherlands are folks who shoot up drugs, who find out too late they're poz and the older generation who had suboptimal treatment. Seldom new infected who have treatment care in time will get AIDS. (the figures are in The Netherlands: about 18,000 poz people; each year 100 of them die; 50 of them die of AIDS related Illness).

Now my problem: I notice that I sometimes think too easy about HIV (I think so), like: When I have treatment care then I don't have to be worried. On the other hand I think: Holy Mozes, I'll die young/premature. I really can't find the right balance, it feels like my feelings can't get in between.

I also found an URL which was really encouraging. But this URL sounds so unbelievable optimistic (perhaps I'm wrong): http://www.i-base.info/qa/?p=106

Besides that I also read with lots of pleasure what car do you drive (I drive a Chevrolet Leganza). And when I look at many of you (for example ACinKC) I really feel like: 'Hey, HIV is not that bad at all! Stop worrying Zeb and go on with life!'

How do you regard this? How do you regard HIV for newly infected? How's your mindset.

Please don't come with the 'live day by day stuff' or 'Here we go again about life expectancy' or 'you also can be hit by a bus'. I'm a father of two toddlers and I want to go on with life.

I'm really looking forward to your reactions.

Zeb
« Last Edit: May 20, 2007, 09:34:09 AM by zeb »

Offline bocker3

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Re: The HIV Mindset
« Reply #1 on: May 20, 2007, 09:52:31 AM »
HI Zeb,

My life has not changed all that much.  I take medicine twice a day, I have quite a few more doctor's appts then before, but otherwise, things are fairly routine.  My first year or so did have a lot of mood swings as I slowly grasped my diagnosis.  Now, I still have the same job (stress and all), I still play tennis on the same leagues, I still save for my retirement, I still travel, I still expect to watch my grandchildren grow up, etc.
It can take some time, but you have to not let HIV take over your mind.  I do think about my status, pretty much every day -- it's hard not to do so each time I swallow some pills.  The difference between now and a year ago is that I don't get overwhelmed with fear now.  I have done lots of research and I know that there are no guarantees that things won't change -- that HIV may make my life more difficult down the road -- all I can do now is live my life and deal with those possibilities if and when the arrive.
I've said it before -- I did not know when or how I was going to die before HIV arrived and I still don't know how or when I'll die now that it is here.
Learn what you can -- do all you can to be healthy and then -- enjoy your life and enjoy watching your children grow up.

Hugs,
mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline SASA39

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Re: The HIV Mindset
« Reply #2 on: May 20, 2007, 10:06:49 AM »
Zeb stated here that one one who are dying are the late starters among others .
That part is frightening me .
Until Oct `06 I was feeling fine and then like an atomic blast CD4=58 and I was knocking at the heavens door .........
I sliiped through with only a Egsofageal Candida  , Herpes ans HPV but I still cannot get rid if thinking that I `m  too late..............and a Grim Reaper on my back......
Oct.     `06.  CD4=58  ?    %       VL not perform. ?!?
25.Dec.`06.         203       14        VL= 0
29.May.`07.    broken device        VL=1363
20.June`07     broken device        VL=0
25.Dec `07  CD4=582                  VL=70
14.May `08  CD4=448
29.July `08                                  VL=0
26.Nov `08  CD4=674                    VL=179
16.Mar `09  CD4=554                    VL=0
19.Jan`10 CD4=715               
03.Mar`10                                    VL=0
24.Aug`10 CD4=524                     VL=0
04.Dec`10 CD4=626                     VL=0
15.Sep`11                                   VL=93
17.Nov`11                                   VL=0
05/26 .Jul`12 CD4=713                 VL=0
28.Nov`12 CD4=916                     VL=0
09.May`13                                 VL=0

Offline joemutt

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Re: The HIV Mindset
« Reply #3 on: May 20, 2007, 10:54:20 AM »
I think it's not unusual to have these kind of extreme thoughts- optimistic or pessimistic;
your diagnosis is quite recent and you would like to have some certainty either way your thoughts go,
the uncertainty takes some time to get used too. Many people have been doing very well and many have died.
We cannot know the future, but we can take care of ourselves in the best possible way, and for me being moderately optimistic is part of that.


Offline Life

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Re: The HIV Mindset
« Reply #4 on: May 20, 2007, 11:21:25 AM »
Zeb your certainly not alone in your thinking.   I am like a Yo-Yo bouncing up and down based on what I read be it true or un-true.   When I feel physically tired, I wonder what that could be?   I to am pretty new to the diagnosis and I think until you become "un-new", these feelings will be there.   For me, I guess it really depends on how much power I really want to focus on my longevity or the what if's.   They really get in my way and until they really start pissing me off, I don't do much about them.   But, in comparison to a year ago, jez, its like night and day.    I trust in my doctor and I continue to focus on what hiv is for me at my time of infection.   I still hold very close to me those who have been doing this alot longer than me.   I am scared for some of them dealing with therapies that were not as developed as those now.   I say a lot of prayers, but in the end its my brain that throws me the curves.   That is what I am working on via being here, via reading all I can that is accurate and up to date.   Staying away from the denialists and keeping busy with my life....   

I think you might be a tad out in the future, ya think?   Come back a few days and it is a bit easier...

Hugs,

Eric

Offline Dragonette

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Re: The HIV Mindset
« Reply #5 on: May 20, 2007, 12:00:22 PM »
Hoi Zeb!

It's nice to see you back here. I was wondering how you were.

well as you know your diagnosis is quite new (even mine is) and there is a lot of turbulence, anxiety.

we can't predict the future. but I am quite optimistic for you insofar as HIV is concerned.

I have a much more fragile health than you having just gone up from a CD4 of 77 to around 200 and yet the doctors here enocourage me to have children. This means that they do not expect me to get too ill to take care of them, or worse.

on paper, it is better to start treatment before the counts drop below 250 minimum. but this also depends on the OIs. me and Sasa, we didn't have bad OIs, so I reckon we'll be fine. There are people in my hospital who had a CD4 of zero and VL in the millions, who have recovered and are doing fine. Let's stay optimistic then. It's normal to move between anxiety and relief (I do all the time) but what goes on right now goes on <mostly> in the mind.

Take care,
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline otherplaces

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Re: The HIV Mindset
« Reply #6 on: May 20, 2007, 05:07:06 PM »

For someone diagnosed today HIV is a crazy mind game.  It's been almost two years for me.  Physically I feel better than I did prior to being infected.  I quit smoking, and I don't drink anywhere near the amount I used to.  I've been running 2 to 3 miles almost every day, and I lift weights, push-ups, all that.  I'm probably more physically fit than 3/4's of the people I walk by every day.  I take one pill every night that has really no discernable side-effects currently.  I can say I'd get rid of the virus in a heartbeat if I could (who wouldn't?), but there is no doubt it has caused me to make some really positive changes in my life. 

The social aspect is a different story, but that is largely other's problems/fears more than my own.

I don't know where this leads, but I think part of being HIV+ is to realize you didn't really know before, you just felt safer for obvious reasons.  HIV just lifts the veil of assumed safety we all feel.

best,
brian



Offline BT65

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Re: The HIV Mindset
« Reply #7 on: May 20, 2007, 05:26:25 PM »
Well, I was diagnosed in early '89, and I can tell you when I was diagnosed that's ALL I thought about!  I already had a suspicion that I was poz, because in '88 I had a terrible "bronchitis" I couldn't get over and a lymph gland swell out the size of a baseball.  That's when all the commercials were on about AIDS, all the old scarey ones.  And people were dropping like flies. I couldn't help but walk around thinking "am I next?"  I went through a few bad bouts of illness (really bad), a coma from my body becoming septic from a urinary tract infection, lots of injuries.  With the new medications, to me right now, life kind of seems like the sky's the limit.  I'm not unrealistic, just a lot more relaxed then I used to be.  I went to an AIDS Memorial service today in my town.  It reminded me of soooo many people I grew to love that I miss terribly.  But I do know one thing-I don't go to near as many memorial services for people like I used to. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline bear60

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Re: The HIV Mindset
« Reply #8 on: May 20, 2007, 06:13:07 PM »
"But I do know one thing-I don't go to near as many memorial services for people like I used to.  "  quote Betty
....................

Whooo weeee aint it the truth.  But it does not lessen the pain from the ones we have lost.
Zeb..... I dont know what to say to you.  There is no easy answer. If you seek a therapist who will help you, that may be your best approach.
Poz Bear Type in Philadelphia

Offline Joe K

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Re: The HIV Mindset
« Reply #9 on: May 20, 2007, 06:34:19 PM »
Zeb, if you don't want to know how to "live", why are you asking?  I am a father and today I watched as my daughter graduated from college, a sight I never thought I would see when I became poz in 85.  Yet 23 years later, here I am and how I did most of it, is through the very advice that you seem to so readily discount.  I understand you are recently diagnosed and being a father can only add to that stress, but I think your biggest block right now is you.

As I said in another thread, yes having HIV sucks, it trashes your life and you will never be the same again.  That said, you contracted HIV, not a split personality.  Believe it or not, you are the same Zeb you were before you became poz and you will continue to be that man, unless you prevent yourself from being happy.  I believe you need more time to adjust so you will understand that you are living with HIV, not that HIV is running your life.  Right now, the only one stopping you from doing anything is you.  That is probably a good thing right now, because you are obviously conflicted about many issues and might I suggest that the one issue you really need to address is becoming your own best friend. 

You need to find a way to forgive yourself for any role you might have played in becoming poz and the only way you can forgive yourself is to love yourself enough to be worthy of forgiveness.  Easier said than done, but it will happen, given enough time.  That is why the best advice I can give you is to take it one day at a time, because if you have one foot rooted in the past, with the other rooted in the future, then you are pissing on your today's.  My point is we are only human and if you need to take small steps (one day) to start, then that is what you need to do.  There is no right or wrong way to adjust to being poz, all that matters is that you do adjust.

And when you do, you will start to see how hard you have been on yourself and how wasted all that energy was.  You will however, have gained a very valuable life lesson that dictates we are each responsible for the life we live.  Take it slow, my friend and learn to live in the moment.  You know the children will be out the door in no time, so please don't waste all your time fretting about things which you cannot control, while ignoring your family and all the beauty that they represent.

Your life will go on, things will get better and one day you will fully understand this post.  Until then, be good to yourself, to those you love and start to believe that you are worthy of love and all the beauty that life has to offer.  Stop focusing on what you believe you do not have and focus on all that you DO have.  Let's see, you have good health, a mate, children and the support of many people.  Those sound like the makings of a very solid foundation, one upon which you will build your future.

Offline BT65

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Re: The HIV Mindset
« Reply #10 on: May 20, 2007, 07:23:38 PM »
That is why the best advice I can give you is to take it one day at a time, because if you have one foot rooted in the past, with the other rooted in the future, then you are pissing on your today's. 

Geeze, I've heard these lines many, many times...wonder where...oh in recovery meetings!  Good advice but I do think they are a bit overused.  Everyone advances at his or her own rate, or they stay stuck.  Plain and simple. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Life

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Re: The HIV Mindset
« Reply #11 on: May 20, 2007, 07:56:00 PM »
Keep comin back Betty!  ;)

Eric

Offline leatherman

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Re: The HIV Mindset
« Reply #12 on: May 21, 2007, 12:36:33 AM »
Hey, I'd say that you're feelings are normal, and my advice is "you'll have to get used to it". LOL Just like everyone else's life (sick or not), you're going have good times and bad times. Some days the depression will win, because who really wants to think about doctors, meds, lab test, or your own mortality? However as time goes by you have two choices. Either let your fears of impending doom grind your life to halt; or jump each day at the extra chance you've been given because it's another day you have survived this disease.

After I was diagnosed, I was hospitalized twice with pneumonia (pcp), lost my partner to AIDS, was taking 38 pills and capsules a day that made me barf all day long, and still outlived our 5 cocker spaniels, all within a three year span. Sad doesn't begin to describe my life back then.

But . . .

I stayed alive long enough (another 7 years) to get onto better meds (only 8 pills a day now and NO side effects!), to not die when my doctors had thought I would, get a new partner, get healthy again, and get 4 great-grandkids of my very first spaniel.

Now 15 years after my diagnosis, I still get an occassional day when I cry about the partner I lost or wonder once again just how long I might survive this illness (remember, I told you that you'd have to get used to it); but those few bad days now are offset by all those numerous other days when I wake up in the morning with a positive attitude, a caring partner, wonderful friends, a great family, and my dogs.

All because I stayed compliant taking my meds.

As someone mentioned earlier, having HIV will trash your life at times; but eventually (and unfortunately it usually takes some time) with a more positive attitude, you'll learn how to put it all into it's proper place, regaining some control over you mostly uncontrolable life. LOL Just keep looking every day to find that silver lining and you'll be sure to find it -
in the wagging of a dog's tail,
the beauty of a cloudless day,
good time with friends or perhaps
even in the smiles on your children's faces. :D

Best wishes and good health!
leatherman (aka mIkIE)


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

Offline zeb

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Re: The HIV Mindset
« Reply #13 on: May 21, 2007, 08:06:26 AM »
Hi you all,

Well the reason why I posted this was the following: The Dutch HIV association has his own site. And a posting appeared from a 24 yo guy who said: 'I really can't understand the doom and the gloom. I tested poz Feb 17th and I still go out and I decided to get a tattoo. Why not? My life is shortened anyway so I decide to live life to the max. And hey, I take full responsibility because I never used a condom. I attended each week sex parties with a few man. The only problem for me until now is that I needed to tell my mother. She immediately asked me who infected me. But I told her I didn't know.' So I asked him how he felt, he said: 'Well the advantage of being poz is that I don't need to use a condom anymore.'

It was so surrealistic to me to notice someone handles his diagnosis like this. His relaxed way of dealing with it made me feel uncomfortable. It made me realize that hiv is a deadly disease and that I carry this bug inside of me and that - despite treatment care - I have an increased risk of getting ill or dying young.

I'm really bouncing between pessimism and optimism. I can regard that as a benefit of the current meds (in the early days it just was pessimism). But it's really a brainfucker.

greet
Zeb
« Last Edit: May 21, 2007, 08:58:54 AM by zeb »

Offline LT

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Re: The HIV Mindset
« Reply #14 on: May 21, 2007, 08:36:08 AM »
Over the years I've talked to a lot of newly diagnosed people.  In my experience, people's thoughts seem to run something like this.

During the first year, they're afraid all the time.  Every little medical thing is "The Beginning Of The End!"  Every cough is PCP pneumonia.  Every bruise you don't remember getting must be KS.  Every fever must be something serious. Every time you forget something, it must be dementia. Every case of food poisoning just has to be a horrible intestinal parasite.  With every cut, you imagine you're spurting death out into the universe.  The virus is on your mind many many many times a day.  You are oblivious to the fact that before HIV, you occasionally got sick.

During the second year, people are a little less paranoid.  While the same situations are still stress provoking, the fear is much lessoned.  You only think about the disease a couple of times a day.

Some time around year three, you relax and settle into the virus being just as much a part of your as the colour of your eyes, or the shape of your nose.  You only seriously think about HIV once or twice a week.  A setback will always bring the early fears right back, but they hang around for shorter and shorter periods of time.

If you need a little hope, go read the "Introduce Yourself" thread in the "Long Term Survivor" forum.  While I haven't made my post there yet, I was diagnosed over 21 years ago, and have probably been Poz since the fall of 82 or the spring of 83.

Mentally prepare for the worst, but always hope for the best

Offline Dachshund

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Re: The HIV Mindset
« Reply #15 on: May 21, 2007, 08:53:56 AM »
Hi you all,

Well the reason why I posted this was the following: The Dutch HIV association has his own site. And a posting appeared from a 24 yo gay guy who said: 'I really can't understand the doom and the gloom. I tested poz Feb 17th and I still go out and I decided to get a tattoo. Why not? My life is shortened anyway so I decide to live life to the max. And hey, I take full responsibility because I never used a condom. I attended each week sex parties with a few man. The only problem for me until now is that I needed to tell my mother. She immediately asked me who infected me. But I told her I didn't know.' So I asked him how he felt, he said: 'Well the advantage of being poz is that I don't need to use a condom anymore.'

It was so surrealistic to me to notice someone handles his diagnosis like this. His relaxed way of dealing with it made me feel uncomfortable. It made me realize that hiv is a deadly disease and that I carry this bug inside of me and that - despite treatment care - I have an increased risk of getting ill or dying young.

I'm really bouncing between pessimism and optimism. I can regard that as a benefit of the current meds (in the early days it just was pessimism). But it's really a brainfucker.

greet
Zeb
What makes me uncomfortable is your need to point out that it was a "gay guy" making this statement. Why not narrow it down a bit more to include race and religion? I'm not an adherent of the politically correct crowd, but your description makes me uneasy. I wonder if the statement above would have been made by a black female if you would have been quite as descriptive.

Offline zeb

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Re: The HIV Mindset
« Reply #16 on: May 21, 2007, 08:58:28 AM »
Sorry Dachshund,

Whether he's gay or not makes no difference.

I'll correct it. It can be read wrong. My apologies.

Zeb

Offline LT

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Re: The HIV Mindset
« Reply #17 on: May 21, 2007, 08:58:50 AM »
Quote
Well the advantage of being poz is that I don't need to use a condom anymore.
While I writing my previous post, you where typing the note that included the above quote from the 24 year old newly infected guy.

Sadly he is very wrong in that thought.  The virus makes up to 13 Billion copies of itself every day.  We usually short-form Darwin's theories as "Survival of the Fittest," but that not really what he said.

As every organism reproduces, some errors are made in the copies.  Because HIV is a strand of RNA instead of DNA it is even more prone to those errors. Sometimes those mutations prove useful to the survival of the species.  In a higher level organism that might be a different shaped beak allowing it to eat a seed not consumed by others.  With HIV that might be resistance to a drug, or some other bodily defense.  Because of this constant mutation, everyones version of the virus, is their own, slightly different from everyone else's.

Your young correspondent is just asking for multiple infections, with multiple drug resistant strains, which will definitely lessen his options for treatment.  It will also probably shorten his life.  It is sort of a self fulfilling prophecy.

He's still in that first year that I spoke of.  The "my life is over -- there is no hope" stage.  I pray that in time he will decide to take better care of himself.  But only he can decide that.

Don't let his negativity, and depression affect you.   Ok, it can't help but affect you, and add to your own early stage fear.  But realize it for what it is.  Try to put his thoughts (and your own) in the perspective of the road to acceptance I described.
« Last Edit: May 21, 2007, 09:00:55 AM by LT »

Offline zeb

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Re: The HIV Mindset
« Reply #18 on: May 22, 2007, 07:41:11 AM »
Hi LT,

I've read your replies. Well I don't know how to react completely on that. I mean: I'm still in the first year.
Docs here (and for exapmple on the body) keep saying: plan your life and future. It really sounds so unbelieveble. Ok, the 'Rock Hudson era' is behind us. But still people die of hiv.

I wonder: what do they die of? Why do they die? (a real mind fucker this virus is!)

Well I think I did the right thing a couple of days ago: I bought myself a new digital camera and make a lot of pics of my kids.

About this young correspondent: I guess you're right. I wrote to him that the odds seem to be more and more in our favour with the new meds. So he should take care of himself. I wished him luck and a good and healthy life. Let's hope he'll be fine.

...still it's so hard to believe that there's a big chance of making it to our Golden Years.

grts Zeb

 


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