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Author Topic: accepting the new condition  (Read 2025 times)

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Offline zeb

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  • Posts: 172
accepting the new condition
« on: August 15, 2007, 03:47:17 PM »
For one and a half week ago I met someone special. She's poz too (found out during pregnancy of her 2nd; infected by her then hubby).
Well, I'm still bouncing around mentally about this diagnosis. Worried and fearing I won't see my kids grow up, and so on.

At the same time she says: Now listen up, it's not this bug which is gonna take your life, it's your attitude and personality. You need to accept that in life nothing is controleable.

So I asked: Aren't you worried?

She: No, not at all! The only thing that's annoying is this freaking stigma and the hangover I sometimes feel with Sustiva (Stocrin). But, why should I be worried? I'm having meds, I have access to treatment care and my doc says, there's no reason to assume that the meds won't work in the future, you'll get old with this! No big deal! The doc stated that in this hospital (university clinic in Stockholm), all the folks who were doing the things they should do are doing great. Of these people no one died the last 10 years and they're doing fine! (fyi: health care is free over there. And the way how hiv patients are treated and supported in the medical way is really fantastic!)

Ofcourse I was glad to hear this optimistic sound. But I also wondered why I give hiv the chance to ruin many of my days. I've spent many times thinking about that. And yes, I'm a control freak, raised by an authoritarian dad (who wanted the best for his two sons). I guess 'failure' didn't fit the picture. And I feel I've failed now. I have lost some control.
Does anyone recognize this? And if so, how do you deal with it?

Zeb
« Last Edit: August 15, 2007, 03:49:16 PM by zeb »

Offline Life

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  • Member 2005
Re: accepting the new condition
« Reply #1 on: August 15, 2007, 10:03:35 PM »
Alot of us do it the same way you are doing it now Zeb.  You find some pearls and hold on to the belief until it runs out, then you find another one and another one.   I have quite a few friends that talk as "she" does.   And on the other hand, I also have a few friends that are a bit more akin to the longer term affects of all this...  But that is their life's,  ours is our own.   

Take it somewhere good...  Might as well ahy?

Eric

Offline mjmel

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Re: accepting the new condition
« Reply #2 on: August 15, 2007, 11:05:10 PM »
Well, Hi Zeb! Long time no see.
Well, you met someone positive who is on the upswing, eh? Nice!
If you are mystified by why your attitude is constantly ruining your day and you'd really like to be rid of it and change your way of thinking then consider some advice: thoughts are things. What you constantly hold before the mind is what will manifest in your life. Hold positive thoughts. Do positive things. Change the habit of thinking this, "I will worry about this...........or that.............today." Do something else instead. Anything that helps you break the habit for worrying about things you cannot control.
Best wishes to you, Zeb.

Mike

Offline xyahka

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Re: accepting the new condition
« Reply #3 on: August 16, 2007, 12:20:22 AM »
As for me i am also strict guy with my health... and i am quite annoyed when something is wrong. Same, grown up by a perfectionnist mother.

With the time i learnt to be more flexible with myself and i am still improving it.

For me, i like to think i try to reach (and keep) a balanced position... not freaking out for every single thing that happens... but still knowing this is my life and i know how to handle it, that the virus is not in control... I AM.

There might be things we cannot control... fine, but there are others we can avoid (like co infections, missing doses and stuff like that) that also affect our health... for those things i cannot control, i rely on my faith in God (my personal strategy... you should develop your own too) but for those things i know i can control and avoid... i use my will and my actions.

Just speaking about the way i see things.

Cheers,

Juan Carlos
« Last Edit: August 16, 2007, 12:23:07 AM by xyahka »
13/03/07 1er diagnóstico /Peso: 79kg
19/04/07 CD4: 494 /CViral: ?? /Peso: 80kg
19/07/07 CD4: 659 /CViral: ?? /Peso: 79.5kg
06/03/08 CD4: 573 (después de meses muy deprimido) /CViral: ?? /Peso: 79kg
17/09/08 CD4: ?? /CViral: ?? /Peso: 84Kg
06/02/09 CD4: ?? /CViral: ?? /Peso: 85Kg /HCV: Neg /HBV: Neg.
07/03/09 CD4: ?? /CViral: ?? /Peso: 87Kg / Gym 3días/semana y Natación 2días/semana.
12/05/09 CD4: 470 /Cviral: ?? /Peso: 87Kg.
08/07/09 CD4: ? /CViral: ? /Peso: 77Kg.
09/12/09 CD4: 510 /CViral: ? /Peso: 78kg. No medicinas aún
10/01/10 CD4: ? /CViral: ? /Peso: 76Kg.
15/05/10 CD4: 320 /CViral: ? /Peso: 76Kg.
01/02/11 CD4: 291 /CViral: ? /Peso: 78kg.
05/05/11 CD4: 366 /CViral: ? /Peso: 78kg.
27/07/11 CD4: 255 /CViral: 138000 /Peso: 78kg.

Disfrutando y aceptando una nueva vida...

Offline DCGUY2007

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  • Posts: 315
Re: accepting the new condition
« Reply #4 on: August 16, 2007, 03:39:18 AM »
Zeb,

I have these feelings too at times. Some days I let hiv really get to me. when this happens I try and go for a walk or to the gym. It usually helps but sometimes it doesn't. I have also done therapy in the past. This has helped some. I have read different self help books too.

Some people do better than others with this diagnosis. The good news is we may all be around a long time. Since there are now meds many people are living a long happy live.

Offline zeb

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  • Posts: 172
Re: accepting the new condition
« Reply #5 on: August 16, 2007, 05:24:09 AM »
Yeah well,

It really fucks the mind up a lot. What also plays part I think is my relation with my doc and how she brings it.
I mean, very often I read stuff on the body from a doc like: "I would emphasize you partner won't die of AIDS, you' re not over optimistic", or I get very encouraging pm's of some people from here like: "Well sure I felt fucked up when I heard the bad news, but my doc tells me I'll be ok and I'll live out my natural life".

Well my doc (nice lady in her mid 40's who's also into research for other infectious diseases): "Well, I don't know. I don't want to give false hope" or "Well, I won't give any estmates or predictions" or "Well, you're lucky that it's not the eighties" (that I know).

I hear so many different stuff. And what is upsetting me? I think it's my desire to control stuff and the lack of acceptance that I have to say my healthy life before diagnosis goodbye. I'm not the 'guy in control' anymore. Damned I feel.I still can't concentrate on my job and this sadness is overwhelming. Will this ever come to an end, or will it be part of the rest of my life? Holy Mozes, I also doubt whether it make sense what I'm doing. Why save for retirement? (to mention an issue) Do I save because it feels good (planning for the future) or is it denial? Well, it seems I'm rambling...

Zeb
« Last Edit: August 16, 2007, 05:26:22 AM by zeb »

Offline emeraldize

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  • Posts: 3,348
Re: accepting the new condition
« Reply #6 on: August 16, 2007, 09:28:52 AM »
It really fucks the mind up a lot.

Well my doc (nice lady in her mid 40's who's also into research for other infectious diseases): "Well, I don't know. I don't want to give false hope" or "Well, I won't give any estmates or predictions" or "Well, you're lucky that it's not the eighties" (that I know).

I still can't concentrate on my job and this sadness is overwhelming. Will this ever come to an end, or will it be part of the rest of my life?

Why save for retirement? (to mention an issue) Do I save because it feels good (planning for the future) or is it denial?

Well, it seems I'm rambling...

Zeb

Zeb

I agree, it does fuck with the mind.

Couple of thoughts. First, I'm not a mental health pro, but I'm wondering if you are suffering depression at present and if so, whether you are receiving treatment for it. I would explore that. Two clues: can't concentrate and overwhelming sadness, etc.

Second, sounds like you've got a straight shooter doc, no pie-in-the-sky promises, conservative, covers her ass and hopefully yours. YOU have to be the filtration unit of all info you receive from her, from publications, posters on this site, etc. TAKE THAT ROLE ON WITH GUSTO in true "control freak" style and you'll start to feel like you're driving the bus more hours per day than the virus.

Finally, why NOT save for retirement? Save for next month, next year, next decade. Save simply because it's intelligent, forward-thinking, reflects optimism and oh, by the way, LUCKY YOU! that you've found a woman with whom you're getting along and she's an optimist to boot.

Most serious of all, back to the first thought, see if depression is undermining you, Zeb. Get yourself grounded with meds and/or therapy (counselling)  if necessary and see what a difference it can make. Depression can so thoroughly kick one's ass. Mental illness is just another disease state to deal with and to be depressed as a result of becoming positive is not surprising at all.

If you like, get creative with the virus. Personify it as the bully in your class at school whom you've finally figured out a way to outrun, outwit, outdance, etc. Do whatever it takes to move into the lead dog position---borrow a phrase from AA if you like...fake it til you make it. As Mike asserted earlier, your thinking has a great deal to do with how each moment goes.

Cheers. And, I mean Cheers!

Em
« Last Edit: August 16, 2007, 09:33:51 AM by emeraldize »

Offline xyahka

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  • Posts: 778
  • Dance together!! aha!! aha!! I like it!!
Re: accepting the new condition
« Reply #7 on: August 16, 2007, 03:21:13 PM »
We all fall into depression during first months... some of us get over it just with the help of a counsellor/psychologist.. some others need more help. What i am trying to say is that whatever happening in your mind is normal... and it will take some time to disappear, it is ok to feel sad, worried about future, asking why should i go on, what for... we all know how it feels, we faced it and overcome it. You will do it too.... there is a process to follow... and the only way to get that thing done is go step by step. It does come to an end after some time, you only have to be patient and give you time.

A big help for me was meeting my psychologist, who let me know which kind of things i would face mentally so i knew i was going through the process and understood this things should happen. That allowed me to cry a lot... and it felt good, i cried everytime i felt the need... and slowly... come the acceptance of my condition and the feeling of happiness for being alive came back, now more than ever.

Read a bit more of the psychological impact of hiv on people but much more important... talk to someone who can help you to deal with this. I never liked psychologists but now mine is one of my very good friends. We used to meet once per week and now 5 months later i meet her once per month only. Things do get better.

hugs,

Juan Carlos (knowing there is always a light at the end of the tunnel)
13/03/07 1er diagnóstico /Peso: 79kg
19/04/07 CD4: 494 /CViral: ?? /Peso: 80kg
19/07/07 CD4: 659 /CViral: ?? /Peso: 79.5kg
06/03/08 CD4: 573 (después de meses muy deprimido) /CViral: ?? /Peso: 79kg
17/09/08 CD4: ?? /CViral: ?? /Peso: 84Kg
06/02/09 CD4: ?? /CViral: ?? /Peso: 85Kg /HCV: Neg /HBV: Neg.
07/03/09 CD4: ?? /CViral: ?? /Peso: 87Kg / Gym 3días/semana y Natación 2días/semana.
12/05/09 CD4: 470 /Cviral: ?? /Peso: 87Kg.
08/07/09 CD4: ? /CViral: ? /Peso: 77Kg.
09/12/09 CD4: 510 /CViral: ? /Peso: 78kg. No medicinas aún
10/01/10 CD4: ? /CViral: ? /Peso: 76Kg.
15/05/10 CD4: 320 /CViral: ? /Peso: 76Kg.
01/02/11 CD4: 291 /CViral: ? /Peso: 78kg.
05/05/11 CD4: 366 /CViral: ? /Peso: 78kg.
27/07/11 CD4: 255 /CViral: 138000 /Peso: 78kg.

Disfrutando y aceptando una nueva vida...

Offline David_CA

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  • Posts: 3,246
  • Joined: March 2006
Re: accepting the new condition
« Reply #8 on: August 16, 2007, 04:11:55 PM »

I hear so many different stuff. And what is upsetting me? I think it's my desire to control stuff and the lack of acceptance that I have to say my healthy life before diagnosis goodbye. I'm not the 'guy in control' anymore.

Zeb,
That's the thing that gets to me most about HIV.  The thing is... we're really NOT in total control of our lives even without HIV.  If anything, I know many, if not most, of us are MORE in control of our health 'cause we now have to be.  When it gets to me, I just try and figure out why I feel different about it at that particular point.  I usually can't come up with a reason.  As long as I'm doing reasonably well healthwise, I figure that things are good.  I go through those feeling of not being in control occasionally, and I always come out realizing that I'm doing ok, take a deep breath, and get on with life.  One thing that really helps me is staying busy.  As much as I sometimes don't want to work on a particular project at home, it's good for me to do so.  Sometimes I have to force myself to start, but before I know it, I've forgotten those feelings.  A good physical distraction goes a long way in keeping me healthy mentally. 

In terms of failing and not meeting your dad's expectations or wishes, that's something you're just going to have to get over.  Realize you made a mistake and that you are now doing what you can to correct it the best way possible.  You ask why you give HIV the chance to ruin your days.  I think that it's because it's easier to take the passive approach and allow IT to control you.  It often takes more effort to NOT allow things to control us, but what option do we really have if we want happiness?

As for not saving for retirement or whatever, why not?  Are you planning on being retired (worst case from disability) and having somebody support you?  If not, you need to save.  We all do.  Take care.

David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline SoSadTooBad

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  • Posts: 248
Re: accepting the new condition
« Reply #9 on: August 18, 2007, 10:48:36 AM »
I'd take a serious look at the doctor you are working with.  I can understand that she does not want to set false expectations, but I take great comfort in the encouragement I get from my doctor, and everyone in his office.  He constantly assures me that this is something that can be managed, and with a lot of work and a little luck something that you can grow old with. 

When I first found out, my primary care physicial recommended this ID specialist because he is so good with patients - I was a basket case when I went to see him, and the first thing he said when he saw my labs was "This isn't too bad, your numbers will improve a lot, just take your medication as prescribed."  BTW, my labs were like shit at the time.

Don't stay around people that radiate negative energy - get yourself into a place where the energy is positive, and you are focused on the future. 

Balance the joys of being here today with the comfort of knowing you have a great shot at making it to be a dirty old man.

Offline zeb

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  • Posts: 172
Re: accepting the new condition
« Reply #10 on: August 18, 2007, 11:21:52 AM »
@ Eric: First of all I want to thank you for you reply. You replied before on some other postings I did. I want to thank you for your kindness and I notice that you have a good sense how I feel. Your words sheke me up. You're right: our life is our own life. I guess it's hard to adjust for me as I'm doing this without any of my relatives or friends knowing.

@ Mike: Well sometimes I may sound dramatic. I guess if I were a gay guy you could call me 'drama queen' ;-) But it can be overwheliming yeah. 'Do positive things' you said. I followed your advice. I just returned from a children's farm and it was really fun to be there with my two little sweethearts. It really breaks the habit of worrying. And I should watch out not te be too obsessive with hiv.

@ Juan Carlos (John Charles  ;) ). This flexibility is what I cerntainly need. It's not healthy I think to try to control everything. But it has become some kind of 2nd nature. I guess there's a lot of work to do for me on that part. I was connected to a counsellor, first thing this woman said: well I'm not specialized for hiv patients, but I know how to deal with it because I've had more people here with terminal illnesses. Not such a good idea, I thought.

@ DCGuy. Sometimes I try to make the issue small and simple, like: What the fuck, if i can get old with this i still can reach my goals and be around the people I love. But this is also the $64,000 question for me.

@Em, well I had some medications before. But the really were making me dizzy and slow. I felt like some weird super hero with the name: Slow Motion Man. After a few weeks I decided to quit them. Reason: with meds I had no contact with the world it seemed. I guess my thinking has to change a lot yeah.

@David, Well, I'm still saving for (I hope) my golden years. In case I won't needed, the idea of doing something for the future gives me a good feeling. I hope it works out well.

@SoSadTooBad, in the meantime I discussed this issue also with some other poz folks. They have told me the same story as your doc tells you. I think I need to change docs.

Offline koksi

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Re: accepting the new condition
« Reply #11 on: August 18, 2007, 12:59:17 PM »
Hi Zeb,

I have my own ongoing struggle to manage the mood aspects of infection:  the sadness, or guilt, or shame.  Above all, as I have commented elsewhere, I feel that my mood responds to two aspects of the disease that your thread highlights:  a) uncertainty and b) anxiety.  Because I don't know what is going to happen with this, I get down, in part because not knowing where this is going causes anxiety.  Some people recommend trying to frame the disease as a "chronic manageable illness," and I think this may be a good way to try to come to terms with it.  And yet, there is the knowledge that meds cause side effects, that they are imperfect, etc.  In my own case, I know that I am facing an upcoming decision about going on medication and I am worried about what that will be like although I am mostly hopeful that medication will help control the disease and therefore mitigate uncertainty.  I am having trouble 'waiting.'

This all feels really new to me and I can't speak to you as someone who knows. 

At the same time, I do feel that you should °allow° yourself to feel the sadness or worry that you may be feeling.  I don't think that feeling sad or worried about infection necessarily means that one is 'stuck' or pathologically depressed or something like that.  I actually think that those moods may partly relate to a full awareness and knowledge of infection, rather than a repression of the fact of infection.  If that makes sense.  I get the feeling from some folks that their own mode of dealing may be based in repression of unpleasant emotions, and that listening to others about their sadness may in fact spark defensiveness and worry about their own psychological defenses against the disease.

Completely separately, I have to say I am glad to hear that the HIV care in Stockholm is good!  In Helsinki it is frustrating because it is managed entirely through a teaching hospital.  I never get see the same doctor... this is just how they do it here.
seroconversion in March of 2006
positive test May 2006

10/2013: Undetectable, CD4 1000
2009:  Began Atripla

10/2007:  VL 2,300 // no CD4 numbers! :-(
09/2007:  Begin Truvada/Reyataz/Norvir
08/2007:  VL 824,000 // CD4 344 // 21%
06/2007:  VL 326,000 // CD4 351 // 17%
04/2007:  VL 410,000 // CD4 242 // 26%
06/2006:  VL 444,893 // CD4 479 // 21%
05/2006:  VL >500K    // CD4 402 // 17%

 


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