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Author Topic: Living with HIV and the Fear of Change  (Read 8680 times)

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Offline DanielMark

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  • Posts: 1,475
Living with HIV and the Fear of Change
« on: February 18, 2007, 06:25:37 AM »
If I have one prevailing fear, itís that by living with HIV, eventually AIDS related illness will likely take me over and bring about my demise. Itís not in the forefront of my mind daily, but it does stand behind me like a whisper and follows me throughout my waking and sleeping hours. In other words, I live with the fear of what will change in my world Ė physically, mentally, and in my interactions with friends and loved ones.

Hereís something I found, and thought today would be the best time to share it here:

Folks are often afraid of things that affect their existence in a negative way. The question we must ask ourselves is how to cure our fear of change? The most important thing is to understand that life is constructed of ups and downs, and no one can be in a permanent ascending trend -- this is simply impossible. Even the most envied celebrities and famous people experience the downs life has to offer.

The most important thing is not learning to avoid changes, fears, and bad experiences, but how to learn from them and how to widen your comfort zone so it will include change. It is crucial not to let problems overwhelm you, but instead learn from them and discover how to use them in your favor.

(from: http://chetday.com/fearofchange.htm)
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline RapidRod

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Re: Living with HIV and the Fear of Change
« Reply #1 on: February 18, 2007, 06:31:28 AM »
I don't think you have to have HIV to have those types of fears. Everyone is a bit scared of the unknown. You are not alone.

Offline skeebo1969

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Re: Living with HIV and the Fear of Change
« Reply #2 on: February 18, 2007, 06:41:10 AM »


  Daniel,
   
    Yea I hear ya home boy...  I was thinking the same shit as I was puking my brains out last night!  Is this it? Could this be the trip?  I am about to go hurl again, but at least I've read this post and realize... maybe I just need to think positive!

  Thanks Danielson
I despise the song Love is in the Air, you should too.

Offline DanielMark

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Re: Living with HIV and the Fear of Change
« Reply #3 on: February 18, 2007, 06:42:45 AM »
Well actually, I was also thinking how fear is at the root of all the resistence to changes going on around here lately with privacy issues and changes in membership, so to me the concepts don't only apply to a singular specific fear.

Fears only have as much power as we give them.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline RapidRod

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Re: Living with HIV and the Fear of Change
« Reply #4 on: February 18, 2007, 06:45:35 AM »
Daniel, it's a lot of fear over nothing.

Offline Longislander

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Re: Living with HIV and the Fear of Change
« Reply #5 on: February 18, 2007, 07:23:06 AM »
Sure-, small, insignificant, mindless, useless fears of a moron-that my coworkers in law enforcement in the state of NEW YORK, who all watch CSI:NY, will somehow come here --because they do know how to use the internet--, see a poster named LONGISLANDER, say , 'hey, I'm a longislander too, wonder if I know them'............

I hope it does pass, I hope no one at work puts the fact together,that I just went on vacation to Puerto Rico, and so did this Longislander guy.

I also know I'll not be discussing anything about my life, even in general terms, again. And since I can't come here to share such things, how long do I stay?
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline dtwpuck

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Re: Living with HIV and the Fear of Change
« Reply #6 on: February 18, 2007, 07:31:54 AM »
How Buddhist of you.  :-)  I would echo Rod's sentiment that fear is not something we poz people have a monopoly on.
I think the main difference is that when you have a long-term disease like this, some of the fear goes from the unknown to the specific.. at least inasmuch as hiv is concerned.  This gives some people the realization that they can control their fear... make it a problem to solve, so to speak. 

Ultimately,  when you realize that there is almost nothing in life that you can control, and that there never has been, you might become afraid, you might despair.  There is no reason to.  There is one thing you can control, 100% of the time... and that's your attitude.   Fear is part of that.   While it's not a turn-key solution, it is a great help to me whenever I remember that things are only as bad as I let them be.

Peace

Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline Longislander

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Re: Living with HIV and the Fear of Change
« Reply #7 on: February 18, 2007, 07:34:06 AM »
You're so right Puck, thanks.

It'll be awesome if the word gets around at work that I'm HIV positive.

Thanks for making me see things your way. ;D
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline dtwpuck

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  • дано мне тело, что мне делать с ним?
Re: Living with HIV and the Fear of Change
« Reply #8 on: February 18, 2007, 07:41:53 AM »
Longislander... I wasn't replying to you but to Daniel.  However, your fear of having your status known to others, while reasonable, might come to pass (at some point) whether you wish it to or not.  Are you prepared to deal with this eventuality?  I am not talking about some circumstance on this forum... I am talking about real life situations where secrets like yours get out, situations over which you have no control.  In the end, having the life skills to deal when bad things happen helps to manage your fear.  I am not suggesting that you run around disclosing, but I am suggesting that you find a way inside yourself to deal with this fear without driving yourself insane.   


Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline Longislander

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Re: Living with HIV and the Fear of Change
« Reply #9 on: February 18, 2007, 07:50:00 AM »
Puck, I was slowly getting there, through this forum. It's only been a bit over a year, cut me some slack on my ability to deal with the world knowing too~ :)
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline dtwpuck

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  • дано мне тело, что мне делать с ним?
Re: Living with HIV and the Fear of Change
« Reply #10 on: February 18, 2007, 07:55:28 AM »
Long... I'd suggest that you cut yourself some slack, honestly.  I am not pressuring you one way or another about disclosing.  But I would encourage you to look at your fears and try to figure out what exactly it is you are afraid of.  Maybe play out some of the worst scenarios in your head and try to think about what you would have to do to deal with them?  And ask yourself, are they even realistic?  Or, if they did happen, what would you have to do to deal?  Do you need help?   

Nothing about managing this is simple, and coming to the realization that you can control some things sometimes, but your attitude always, is really not just an "oh I never thought of that" type of epiphany.  It's a slow process and you have to give yourself time.  And, you have to forgive yourself for having the fears. 

Hugs
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline Longislander

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  • Posts: 2,486
Re: Living with HIV and the Fear of Change
« Reply #11 on: February 18, 2007, 07:59:45 AM »
 Puck, I need to PM you, ok
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline skeebo1969

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  • Posts: 5,705
Re: Living with HIV and the Fear of Change
« Reply #12 on: February 18, 2007, 07:59:58 AM »
  Puck,

   You being someone who is somewhat new to these forums you would never understand the level of openness a lot of posters here once enjoyed.   Yes it is easy for you and others who are new here to pass judgement on how others should feel about this whole matter.   Of course you being close minded on the whole thing really sways me into YOUR thinking of open mindedness.... My ex wife left me a voice mail just yesterday asking about the CSI show.  I have her daughter with me now.  I hope to hell she can be convinced by me that HIV is not likely to be spread in the way it was suspected to be on TV.   Of course this is the same woman who would go on a cleaning rampage when her sister, who had AIDS and died 2 years ago, would leave our house after a family gathering.  

  Sad thing is this woman is highly educated, but hey now she can come here and learn.  Hooray!!  

  Some people do not have the same luxury, like you, of not caring who knows...  I agree with Paul on this one and if I was him I would not want people at work knowing my status either...
I despise the song Love is in the Air, you should too.

Offline dtwpuck

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  • дано мне тело, что мне делать с ним?
Re: Living with HIV and the Fear of Change
« Reply #13 on: February 18, 2007, 08:07:30 AM »
skeebo, i am not talking about the specifics of the CSI situation here... I am talking about fear, and what you can and can't control.  I am not passing judgment on anyone and I am truly sorry that this conversation has to degenerate into another political diatribe about the CSI thing. 

I have a lot of respect for anyone's privacy and understand a valid concern about the CSI thing... but I do not get the feeling that Daniel's posting is about that.  And in my opinion, there are a whole lot more real situations where people's fears become realized than what happens on this forum.  My god, how many of us have had our hiv status outed on accident outside of the context of this forum?  I've read many stories of that.  How does one prepare for that kind of situation?  And how do you help? 

I am very much saddened that this topic has degenerated and I really don't want it to become yet another pissing match between people who are mad about something.  I see this as someone asking for help.  So please address the person asking for the help.  If you have an alternative to what I am saying, then post it.  There are many points of view in the world, and mine is not the only one.    Fear is a horrible thing.  It is not easy to deal with and I don't see how belittling someone's newness to the forum helps the situation.
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline DanielMark

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  • Posts: 1,475
Re: Living with HIV and the Fear of Change
« Reply #14 on: February 18, 2007, 09:35:19 AM »
If I may,

Living with this dastardly virus in me has heightened my awareness of how short a time human beings each have to live on this earth, Poz or not, and how fragile life can be. It's already an insecure world, and living with HIV in my body adds to that another kind of insecurity in a personal way.

I was not asking for help per se, but rather trying to start a discussion about FEAR, its roots and causes, and how people cope with theirs. Some interesting thoughts about that have been raised already and I hope that will continue, and not be lost by derailing this thread. Thatís up to people who post here and out of my hands, but I believe (hope) itís not impossible.

The topic of this thread is:

Living with HIV and the Fear of Change

How does being HIV positive influence (if it does) how you deal with fear of change?

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Cliff

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  • Posts: 2,645
Re: Living with HIV and the Fear of Change
« Reply #15 on: February 18, 2007, 09:45:24 AM »
I have fears because of my status, but a fear of change isn't one of them.  A fear of change is an overlybroad term that applies to a few people, (regardless of their status), but I don't consider it a risk for people who are HIV positive.  Being HIV positive, I fear the following:

Having my status disclosed to people who I choose (at this time) to not disclose to;
being discriminated against by my employer;
the possibility of becomming ill and not having the ability to work; and
dealing with difficult side effects from the meds.

There may be others, but those are the big ones.  But no, I don't fear change.

Offline AustinWesley

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    • HIV Discussion Group on Myspace!
Re: Living with HIV and the Fear of Change
« Reply #16 on: February 18, 2007, 10:24:43 AM »
If I have one prevailing fear, itís that by living with HIV, eventually AIDS related illness will likely take me over and bring about my demise. Itís not in the forefront of my mind daily, but it does stand behind me like a whisper and follows me throughout my waking and sleeping hours. In other words, I live with the fear of what will change in my world Ė physically, mentally, and in my interactions with friends and loved ones.

Hereís something I found, and thought today would be the best time to share it here:

Folks are often afraid of things that affect their existence in a negative way. The question we must ask ourselves is how to cure our fear of change? The most important thing is to understand that life is constructed of ups and downs, and no one can be in a permanent ascending trend -- this is simply impossible. Even the most envied celebrities and famous people experience the downs life has to offer.

The most important thing is not learning to avoid changes, fears, and bad experiences, but how to learn from them and how to widen your comfort zone so it will include change. It is crucial not to let problems overwhelm you, but instead learn from them and discover how to use them in your favor.

(from: http://chetday.com/fearofchange.htm)

Hey Daniel,

I have a fear that this fucking virus could wreck my world from my appearence to complete financial ruin.   I refuse to let either happen.  Of course there are things which are out of my control, but some things are within my control.   I don't really fear death, but I do fear being stuck in a crippling positon or paralyzed so I couldn't get my hands on a gun and die with a little dignity.   

So those are my fears I guess!   Whether Daniel Steel decides to pop on here and write another jail house novel isn't one of them!

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline dtwpuck

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  • дано мне тело, что мне делать с ним?
Re: Living with HIV and the Fear of Change
« Reply #17 on: February 18, 2007, 10:25:04 AM »
Hi Daniel...

I think that at some level fear of anything can be interpreted as fear of change.
I like to think that I welcome change, and celebrate it.  Certainly, however, I feel fear at times, so this assertion cannot be 100% true.  Being positive adds a dimension only inasmuch as it hits home the fact that I , too, am mortal.  I am human, and therefore it is my instinct to survive.  I cannot see beyond the veil that is mortality, so at some point there is a fear of the unknown creeping in there.  I am immensely curious about it but terrified as well.  I also know that whatever will happen to me is going to happen.  I have to choose how to come to terms with it myself. 

I look into some of my deepest fears.  I remember a time when I faced my fear of being homeless.  It was at an odd an inopportune moment.  I was in Moscow, a foreign city.  It was getting late and the friends I was with wanted to go here and there and be all social and stuff.  By the time we got about to heading back to where we were supposed to be staying, the metro was about to close.  We got on the subway, but it only took us a couple stops and then everybody had to get off.  We had to find our way back to where we were staying, only none of us knew how to get there, and none of us had the slightest clue of what to do.  To make matters worse, we had lost the Russian who was running around with us, so we really were on our own.

I freaked.
I mean I really freaked.
Every fear I ever had about being homeless came welling up.  The stress of living in the Soviet Union and every little thing piled up on me in that moment and I couldn't stop sobbing.  I was no help at all to anyone trying to solve this problem.  We were going to have to spend the night on the streets of Moscow with no where to go and no way to get there. 

It did eventually get resolved, no thanks to me.  And, I woke up in a bed the next morning.

But I learned something.  My panic was useless.  It didn't help me and it didn't help others.  There wasn't anything I could do about the fact that I was lost.  But there certainly was a lot I could have done by remaining calm and looking at the situation as a problem to solve, calmly and intelligently.

When I try to apply that lesson to how I feel about being positive, about mortality... similar fears well up, but I am much older now and hopefully a little bit wiser.  I know that I cannot control the future.  Hopefully I have learned enough from the past to know that I can control my attitude and at teach myself how to help myself by remaining positive and calm.
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline ndrew

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  • ....-.-.-.-.-.....
Re: Living with HIV and the Fear of Change
« Reply #18 on: February 18, 2007, 11:05:50 AM »
Hi Daniel,

I think this is quite relevant at all times.  I think it interesting when I have the anticipation of something bad or my initital reaction or fear that becomes something other and has negative consequences, perhaps often more so, than that of the eventual thing itself.

For example, the acutual physical senstation of getting my vein poked and blood drawn is one stress.  But I usually create a bigger stress by anticipating the pain, which we could call fear in this case.  So now I have the stress of my FEAR of pain, as well as the actual eventual pain itself, which never seems to be as big of a deal as the fear or anticipation of getting blood drawn... 

Drew

Offline Life

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  • Member 2005
Re: Living with HIV and the Fear of Change
« Reply #19 on: February 18, 2007, 11:15:15 AM »
All of what I have read seems totally agreeable to me?  So why do I not feel better??  Because I am new to this?  Cuz my faith is shitty?  Cuz I lack trust?  I am told HOPE can deminish FEAR.  I try but never win...

Offline AustinWesley

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Re: Living with HIV and the Fear of Change
« Reply #20 on: February 18, 2007, 11:17:43 AM »
Drew, that was another excellent analogy.   One that could apply to all of us as well.

That was a great analogy Puck.   I left one out, my fear of being homeless!   I suppose that could fall under fear of financial ruin though.

I enjoyed your story and it made me think of other irrational fears like the fear of travel or fear of flying.  (Take 9/11 out)

But, a lot of people are terrified of flying so the answer most often for them is to get on a plane and face those fears head on.

This has given me a new outlook on my fear of meds!   While I don't have them in my hand yet I think it's really the fear of the unknown more than anything.  Having read some of others experiences that it was a big non event has helped to reassure me though!

Just like swimming you gotta take that first plunge!  In my case, that plunge will likely be a vat of Atripla pills ; ) 

And Eric, no I won't let fear win either!


Great stuff, all of you!

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline DanielMark

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  • Posts: 1,475
Re: Living with HIV and the Fear of Change
« Reply #21 on: February 18, 2007, 11:45:22 AM »
Some truly thought-provoking responses, guys!

Like you Drew, I often tend to magnify unpleasant pending events beforehand and then they almost always turn out to be less horrid than anticipated.

Call me a pinhead but I really enjoy this type of self-examination. I find it empowering to uncover the cause and effect of the human condition. Living a life where tomorrow is questionable at best, I believe itís important to get to know what makes me tick so I donít turn to self-sabotage or live in a state of struggle and hopelessness. I also agree Ė strongly Ė with dtwpuck that we can at the very least choose our attitudes toward life and I try to apply that no matter whatís going on around me.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline texasguy

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Re: Living with HIV and the Fear of Change
« Reply #22 on: February 18, 2007, 12:24:29 PM »
Being only 14 months into this I'm making progress, but there is still much work to do in dealing with fear and change for me.  I was looking back at a post I made last Monday evening for example.  I had run off to the Off Topic Forum section as refuge.  Thinking back now, it was an evening where fear had crept back in and I was reacting to it.  I'm finding that as time passes my ability to deal with fear and uncertainty seems to be improving.  But it can surface at a moment's notice.  My HIV infection has forced me to deal with many things I otherwise would not have.  Like everyone here I would have preferred a different motivation, but in this aspect at least there are some favorable outcomes.
8/12/2008    102        402      26.8
                    VL         CD4     CD4%
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5/08   42100       287      20.5
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7/06   51700       459     25.3
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Offline Life

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Re: Living with HIV and the Fear of Change
« Reply #23 on: February 18, 2007, 12:30:53 PM »
Texasguy - I think we all want to move from "Oh Fuck" to "Whatever"....   ;)

Offline DanielMark

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Re: Living with HIV and the Fear of Change
« Reply #24 on: February 18, 2007, 04:25:58 PM »
I'm finding that as time passes my ability to deal with fear and uncertainty seems to be improving.  But it can surface at a moment's notice.

I find the same thing texasguy.

Even tho Iíve been practising how to cope with those times for eons (well almost twenty years), I have zero control of when and where this whisper of doubt and fear might creep up on me again. Itís like being slightly haunted in a way. Maybe that sounds dumb but itís the only way I can think of to describe it.

Anyhow progress, not perfection, right? At least Iím not trying to avoid dealing with it entirely.
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Offline Jeffreyj

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Re: Living with HIV and the Fear of Change
« Reply #25 on: February 18, 2007, 04:48:17 PM »
Getting back to the original post:  Couldn't agree with more! Thanks Dan, I have tried to never get "too up" or "too down" By doing this, it kind of makes the transition of the inevitable ups and downs a bit more smooth.

People sometimes think I'm shy or quiet, but I just try to live on an even keel. It sure has come in handy over the past two decades.

You post is a great reminder that it is normal to have ups and downs.

Thanks for that post Daniel. Made me feel good!

Fondly,
Jeff

Positive since 1985

Offline DanielMark

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Re: Living with HIV and the Fear of Change
« Reply #26 on: February 19, 2007, 05:27:13 AM »
I look into some of my deepest fears.  I remember a time when I faced my fear of being homeless.  It was at an odd an inopportune moment.  I was in Moscow, a foreign city.

dtwpuck,

In 2003 I actually had the pleasure of becoming homeless, reduced to living in a homeless shelter for six months. It was during one of my sick times and through a series of poor choices and wrong advice my income was reduced to the point that I could no longer afford adequate housing.

During my time living (more like surviving) in the shelter and the mental fog of those days, I learned a good deal about my self and more importantly about others in the same situation. Iím a bit ashamed that prior to living in the shelter I often thought of those who did as all being drug-addicted dead heads. Yes, there were a few of those in there too, but a lot of people there were simply dealing with unexpected life situations and trying to climb out.

I hope I wonít ever go back to that kind of situation, but as many people know, weíre all only one pay check or health problem away from the possibility. So I suppose thatís another whisper of fear that follows me, on some level.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline David_CA

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Re: Living with HIV and the Fear of Change
« Reply #27 on: February 19, 2007, 06:13:20 AM »
Well actually, I was also thinking how fear is at the root of all the resistence to changes going on around here lately with privacy issues and changes in membership, so to me the concepts don't only apply to a singular specific fear.

Fears only have as much power as we give them.

Daniel

Somehow I knew from the title of this post that this was referring to forum & privacy changes.
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  Atripla started 12-01-2006
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Offline DanielMark

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Re: Living with HIV and the Fear of Change
« Reply #28 on: February 19, 2007, 07:07:14 AM »
That's not the main topic I intended, David.

Daniel
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Offline dtwpuck

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Re: Living with HIV and the Fear of Change
« Reply #29 on: February 19, 2007, 07:42:13 AM »
Wow, Daniel, that must've been really hard.   I look at homeless people myself and feel quite a bit of fear, not because I think less of them, but because it very easily could be me.    It scares me a lot, because once my parents are dead, I won't have any family who would be hospitable enough to take care of me should I get sick.  For me, that's very scary.

Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline Ann

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Re: Living with HIV and the Fear of Change
« Reply #30 on: February 19, 2007, 07:43:49 AM »
Hi Daniel,

When I was younger, I welcomed and even pursued change. At the age of 21, I gave away most of my possessions, packed the rest into the trunk of a 1963 Chrysler New Yorker and moved to NYC (from Cleveland) in a few days notice. It wasn't the first time I'd made a radical change in my life and it wasn't the last either.

The majority of changes in my life pre-hiv were of my own choosing. Hiv changed all that. I suppose learning how to roll with the punches of my own making paved the way for coping with the unwanted surprises in later life.

I'm currently in the middle of a whole raft of changes that I never asked for and never saw coming. I'm still in the middle of the upheaval of my housing situation and will be until sometime in early March.  The recent changes in my support environment have been a real challenge too. I'm working on making lemonade out of lemons.

And I think I'm rambling too.

But Daniel, I'm not so sure if hiv has impacted on the way I face my fears of change, or if it's more a case of my earlier changes being the blueprint for how I cope with changes in my post-hiv world. That's something worth looking into deeper for me - I'll let you know if I find anything interesting.

Ann
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"...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 AustinWesley

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Re: Living with HIV and the Fear of Change
« Reply #31 on: February 19, 2007, 08:23:47 AM »
Daniel,

You just blew me away with your honesty.  I wonder how many would.   I was having a pity party for one and just read your account.   While I still have a fear of being homeless, in some way your own story has lessened it for me to an extent.   And, you're right many are one pay check away from it.   I saw some documentary about how the homeless in America and I forget the statistics, but they were staggering.

We all know that with HIV anything can happen and sometimes does.   I should add my own fear of losing health insurance.   Without that, the cost of meds could put me on the street.   Scares the crap outa me.   But I am also inspired that you didn't give up. 

Anyways, I appreciated your sharing that and admire you for your honesty.   

Wesley
« Last Edit: February 19, 2007, 09:33:00 AM by AustinWesley »
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline DanielMark

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Re: Living with HIV and the Fear of Change
« Reply #32 on: February 19, 2007, 09:25:28 AM »
And I think I'm rambling too.

Aw well then, ramble on Ann. Some of my best insights come from people rambling on. Something I read in your new ďAbout UsĒ intro really hit home with me because that's just how I see life too, as the University of Life, or Life U as I call it.

Wesley,

One thing I am is a survivor. Over the course of forty-seven years Iíve survived child abuse, neglect, bullies, drug abuse, spousal abuse, alcohol abuse and more. I really think thatís because I learned something from each of those and made a conscious decision not to give in and give up.

Yet, paradoxically, that sometimes means having to surrender to the way things are rather than fight against them. I also learned enough along the way to know I actually know less than I sometimes believe I do. Thereís a lesson about being humble in that, and about staying open to learning. God willing, Iíll remain that way until I draw my last. Something tells me Iím gonna need to. ;)

Daniel
« Last Edit: February 19, 2007, 09:27:00 AM by DanielMark »
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Offline Ann

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Re: Living with HIV and the Fear of Change
« Reply #33 on: February 19, 2007, 09:40:16 AM »
Wow Daniel, you sure are a survivor. I kinda feel that way too, although my list of "survives" may not be as long, I think I can relate. I try to learn from stuff life throws at me, whether it's good stuff or bad stuff. I find the richest lessons usually come from the most dire circumstances. I'm not so sure I would have wanted an easy life, I like having the opportunities to learn and grow.

As for "Life U", I hope you got a chuckle out of the graduation comment. ;D

Thanks for this subject - me likey.

Ann
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"...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 AustinWesley

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Re: Living with HIV and the Fear of Change
« Reply #34 on: February 19, 2007, 09:56:19 AM »
Hey Daniel,

You know you don't have to be 47 to have survived all those traumatic issues.   I think of all the issues in my own personal life such as you have written about.  

I'm not a believer in fate, but when people say things happen for a reason it seems to ring true so often.

When I was diagnosed I had a lot of people asking me how I was handling it so well.   To be honest I think it was all those past mistakes and tragedies that made me able to cope with HIV as well as I have.   I'm not sure if I hadn't survived so much before if I would have dealt as well with HIV.  

One thing that bothers me is that many people seem to discredit my thoughts or feelings simply because I haven't had HIV for a long time.   Somehow my opinions don't matter because apparently there is some big badge of honor I have to acquire after years of living with HIV.   I've heard this over and over again, and I've seen others who are newly diagnosed told the same thing.  

It makes me angry that anything I might have to contribute is dismissed so quickly because no one here knows what I have been through in my own life.  

I got off topic a bit, but my point is that you are right and HIV isn't the only serious issue in this world.   I had to learn to put it into perspective.  Compared to some other illnesses this can be a cake walk!   I can't imagine living life as a severe burn victim or what about all those other diseases that are so rare there aren't any support groups.  

Your words just got me to thinking about a lot of things besides fear.   Sorry if I've rambled on.   I'm working through my present fear of calling my doctor's office today to hear the news of my labs and fearing I will be having to pop those pills real soon.

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline DanielMark

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Re: Living with HIV and the Fear of Change
« Reply #35 on: February 19, 2007, 10:23:40 AM »
As for "Life U", I hope you got a chuckle out of the graduation comment.

Forgive me Ann, but I did not chuckle. I actually had a good guffaw and nearly spewed coffee all over my computer screen.

Keeping perspective is half the battle for me, Wesley. The other half is taking what I've learned and using it to help me through life. I don't put a lot of energy into thinking about what others think of me. That's energy I need for other parts of living. Sometimes I find it fun to learn how strong you can be in the face of adversity, even if it sucks to learn it.

No one knows us better than we know ourselves, and I'd rather pay attention to my life and how it all works than be cast about on the winds of someone else's opinion.

ďThe unexamined life is not worth living.Ē (Socrates, Ancient Greek Philosopher)

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline AustinWesley

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Re: Living with HIV and the Fear of Change
« Reply #36 on: February 19, 2007, 10:36:38 AM »
Like you I chalk up all those bad events as life's learning experiences and I don't dwell on them.   Not usually!

Oh, I don't care what those other people think of me.   It's just I see a rift between people based on that so often here.   I'm more frustrated that people use that against others.   I fear it scares some newly diagnosed people off.   Many are afraid to even make a post.   So I fear they aren't getting help because of how some people address them.

I think we learn from each other, I know I have today!

Cheers!

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline redhotmuslbear

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Re: Living with HIV and the Fear of Change
« Reply #37 on: February 19, 2007, 11:22:48 AM »
Oh, the good shit I miss here some days.

One of my maxims for over my life has been:  change is the only constant.

Some of the change has been relatively subtle for me, like going from high school to college, then out into the world "on my own."  Others may have found those transitions quite traumati.  Other change has been jarring, like a couple dozen brain surgeries, the collapse of loving relationships into abuse (neglectful parents, abusive parenting grandmother, rape by my first love), or being suddenly unemployed.  What gets me though the rough spots, without the deist nonsense is The Serneity Prayer:  the serenity to accept what I cannot change, the courage to change what I can, and the wisdom to know the difference.  The easiset thing for me to change are my perceptions and expectations, while the hardest is the truth... because I cannot change it.

That said, I don't countenance all of the crappy things that have happened to me with "but I learned and grew from it."  What bullshit!  No one should have to grow from being beaten and demeaned, violated and defiled.  The takeaways about survival and resilience are the same between abuse and medical setbacks, but I would much rather take another six months in a wheelchair (11/81-5/82) barely able to care for myself than have another man force me to have sex against my will.
"The real problem is not whether machines think but whether men do." - BF Skinner
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Offline DanielMark

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Re: Living with HIV and the Fear of Change
« Reply #38 on: February 19, 2007, 11:54:40 AM »
Hmm,

I agree with you that "No one should have to grow from being beaten and demeaned, violated and defiled," but some do and I have and still am for that matter. Then again, everybody's different. ;)

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline AustinWesley

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Re: Living with HIV and the Fear of Change
« Reply #39 on: February 19, 2007, 11:57:56 PM »
Amen to that!
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline koi1

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Re: Living with HIV and the Fear of Change
« Reply #40 on: February 20, 2007, 02:00:57 AM »
You know what some of the other members have told me that they know more because they have been living with it for so long. Ivahope gets second guessed someitmes because he is a nubie. It does make people think twice about posting an opinion. I have been through hell in my own way, and I know others have been through more than I have. I think our experiences should be validated. Just because I was diagnosed a few months ago does not make my experience any less worthy than that of others. Are we not all here to learn from each other or at least take what is helpful?

I fear change, but not in this forum. There will always be people who care for me and others that could care less what I have to say. I respect the existence of both.

rob
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
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cd4=160 viral load= 131 percentage= 8%
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Offline Cliff

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Re: Living with HIV and the Fear of Change
« Reply #41 on: February 20, 2007, 02:44:00 AM »
In thinking about this thread, (and it's connection to the others), I believe there has been a discounting of fear.  I don't think fear is a bad thing, it's only when it consumes you that it becomes unhealthy.  I get the feeling that some people seem to think that HIV stigma and discrimination doesn't exist or isn't as bad as we think it is, or that we should all become extremely open about our status to combat it.  I don't think any of those are completely accurate.  We are all at different stages of dealing with this disease.  We don't all have the same levels of risk.  Someone who isn't working probably has a lower risk of being discriminated against (at work) than someone who is.  Someone who is a corporate executive might perceive themself as having a greater risk than someone who is staff member at the GAP.  All of this leads us to different ways of dealing with being HIV positive (particularly in terms of how open we are about it).  But getting back to fear, I do believe having some fear helps to remind us that there are negative consequences for disclosing your status.  It doesn't always end in nice fairy tails.  The fear helps to remind us that people still do discriminate against people living with HIV/AIDS.  That there is still far too many rejections (from family members, friends and lovers).  That there are too many health professionals that refuse to provide adequate care to people who are positive.  And too many people continue to make incorrect assumptions about people who have contracted HIV (immoral behaviour, criminals, drug users, willing to infect anyone, sinful, etc.).

There is value to be had in both good and bad experiences.  I don't think you have to have experienced homelessness, catastrophic illnesses, abuse, rape, etc. to grow (cause many of us have not).  Sometimes people can grow from good experiences as well.  And unfortunately, some people are unable to grow from their bad experiences.

Overcoming excessive fear is good (and quite difficult).  But until the stigma and discrimination associated with HIV is gone, I think there will continue to be fear of being outed (or a fear of change, if you choose to use that term).

Offline Queen Tokelove

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Re: Living with HIV and the Fear of Change
« Reply #42 on: February 20, 2007, 03:17:04 AM »
Wesley, you said...

"One thing that bothers me is that many people seem to discredit my thoughts or feelings simply because I haven't had HIV for a long time.   Somehow my opinions don't matter because apparently there is some big badge of honor I have to acquire after years of living with HIV.   I've heard this over and over again, and I've seen others who are newly diagnosed told the same thing. 

It makes me angry that anything I might have to contribute is dismissed so quickly because no one here knows what I have been through in my own life."


I'm glad someone else sees this too.....But don't feel alone, I have been infected for 10 yrs this year and some folks still feel the need to be dismissive towards me too but then when you comment on it, you get lashed at because we don't follow the "norm" or the so called guidelines. Thanks so much for posting that, it's good to know that I am not alone...
« Last Edit: February 20, 2007, 03:22:30 AM by Queen Akasha »
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Offline jkinatl2

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Re: Living with HIV and the Fear of Change
« Reply #43 on: February 20, 2007, 05:05:10 AM »
I only take exception to misinformation or disinformation. That never ceases to bug me.

I walk with my fear. We are well acquainted.
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Offline sweetasmeli

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Re: Living with HIV and the Fear of Change
« Reply #44 on: February 20, 2007, 05:13:20 AM »
Such a good topic. I salute you Daniel for starting a thread on this :)
And so many good points brought up, I barely know where to startÖ

I think as long as we live and breathe we will all experience that ďwhisperĒ you talk of; some of us will recognise it as a whisper, others as a screaming voice that stalks us day and night, and even permeates our sleep. As long as we live and breathe, fear will always play some part in our lives. But like many have already pointed out, the key thing is how we respond to that fear. Another key thing is awareness, that what we are feeling is fear.

My friend asked me, exasperated, yesterday: ďWhy canít I do the things I want to do? Whatís stopping me?Ē Knowing my friend as well as I do, and knowing that he wasnít talking from a financial point of view, the answer (as I told him) was simple: fear. He asked me how he could make the fear go away. I told him Ė much to his disappointment, I think Ė that it wouldnít. After seeing his face drop, I went on to explain that the fear wouldnít diminish or disappear until he started to actually do the very things he is afraid of. In other words, as Ann and others have stated: feeling the fear and doing it anyway. His face dropped even more and he said to me: ďBut what happens if one of my fears of failing is realised when I try to do what I want? Wonít that make my fear bigger?Ē I told him that it all comes down to perception. He could choose to look at life as a place where we are constantly growing and learning. Then instead of viewing his Ďfailed attemptsí as mistakes or failures, he could view them as lessons to be learned from. I know heís struggling with that concept. I have struggled with it in the past. But now its one of my blueprints for living a happy and fulfilling life.

Itís uncanny that this thread should appear when it did (or is it? Hehe!).
Just the other day I was saying to a friend how nowadays I am aiming to push myself a little bit more outside of my Ďcomfort zoneí with a little something different/challenging every day. Whether that Ďsomething different/challengingí be getting out of the house and going for a walk, or going out to a bar with a friend (something I actually donít do often at all), or leaving a voicemail message (which I normally hate doing) or popping over the road to talk (Greek) with my old neighbour who was recently widowed. The list is surprisingly endless. And that list is different for everyone.

Change is inevitable. And fear of change and the unknown is common and natural. I read somewhere recently that all growth (which is what change is) and accomplishment involves taking a risk, jumping from one cliff to the next, leaving your comfort zone and leaping, at least temporarily, into the unknown. 

I also read that we donít actually grow much during the good times; we actually do most of our growing in the face of adversity, through some of our hardest times. When I look back on events in my life, at the stuff that has really shaped me, that makes total sense to me.

The way I see life is like this: my goal is to become the best human being I can.

We all have different ways of perceiving what that goal actually entails and how we will achieve that goal. But the one thing we all have in common is that our journey doesnít end until itís over. And there will be many fears to be faced along the way. You can choose to live in this world or you choose to merely exist. Living involves constant change, growth, evolving. Existing involves staying the same, stagnating, dying.

You canít stop the waves but you can learn to surf! (Love that one!)

Melia :)

« Last Edit: February 20, 2007, 05:20:25 AM by sweetasmeli »
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(,,,_ ,,,)/   (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

Yeia kai hara (health and happiness) to everyone!

Offline DanielMark

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Re: Living with HIV and the Fear of Change
« Reply #45 on: February 20, 2007, 05:40:51 AM »
Just because I was diagnosed a few months ago does not make my experience any less worthy than that of others. Are we not all here to learn from each other or at least take what is helpful?

My first thought is, yes of course, but if you fear your experiences will be or are being dismissed by others that's not a good thing at all.

I have to admit I don't have this fear. Maybe thatís because I'm too certain that my experiences of being HIV positive are all valid by default, through being infected.

Everyone wants to feel understood. A problem is a problem if it exists for you. One of my pet peeves is anyone saying, oh donít feel like that (whatever it is Iím feeling), which is actually just a way of dismissing my reality. I believe they do that because they themselves are incapable of handling similar emotions.

Others I believe see only one answer to a situation, usually their own, and donít want to see through anotherís eyes. True community canít thrive under those conditions.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline DanielMark

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Re: Living with HIV and the Fear of Change
« Reply #46 on: February 20, 2007, 05:58:56 AM »
Melia,

I didn't see your post before posting my previous one, so thank you for that! Two major points from what you wrote that I'd like to highlight (because they've been my experience too) are:

Another key thing is awareness, that what we are feeling is fear.

and

I also read that we donít actually grow much during the good times; we actually do most of our growing in the face of adversity, through some of our hardest times. When I look back on events in my life, at the stuff that has really shaped me, that makes total sense to me.

The way I see life is like this: my goal is to become the best human being I can.


Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline poet

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  • Posts: 934
  • Poet living and working in Central Maine
Re: Living with HIV and the Fear of Change
« Reply #47 on: February 20, 2007, 06:32:46 AM »
There may also be gradations to consider.  When the fear of being hiv positive, of having aids ends with death, the end of life, we confront the final fear which we can't control, can't overcome, won't be empowered from going through it.  When hiv/aids=death, we share the fear of the newly diagnosed cancer patient or anyone who has been given the line from this point to death.  But when what we fear is not directly pointing at death, fear of homelessness, fear of becoming ('simply') sicker, fear of flying, fear of changes at work, moving, these are fears of change which can empower us, partly because there is a next chapter, the chapter in which we can see from where we were, through what we went through to where we end up.  Remember the line 'I'm still here?'  If and when we can look from here to death, we can also put all change into clearer context.  Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline DanielMark

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Re: Living with HIV and the Fear of Change
« Reply #48 on: February 21, 2007, 03:26:08 AM »
When the fear of being hiv positive, of having aids ends with death, the end of life, we confront the final fear which we can't control, can't overcome, won't be empowered from going through it.

I'm not afraid to die Win, tho I will admit some fear about going through the dying part. I have a Living Will giving instructions to assist with that part should I be unable to make decisions on my own behalf. One of those instructions is a DNR notice on all my charts and in my Living Will and Powers of Attorney.

Nor do I believe physical death is the complete end of life, so I suppose it again depends on a personís perspective.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline AustinWesley

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    • HIV Discussion Group on Myspace!
Re: Living with HIV and the Fear of Change
« Reply #49 on: February 21, 2007, 03:42:43 AM »
There may also be gradations to consider.  When the fear of being hiv positive, of having aids ends with death, the end of life, we confront the final fear which we can't control, can't overcome, won't be empowered from going through it.  When hiv/aids=death, we share the fear of the newly diagnosed cancer patient or anyone who has been given the line from this point to death.  But when what we fear is not directly pointing at death, fear of homelessness, fear of becoming ('simply') sicker, fear of flying, fear of changes at work, moving, these are fears of change which can empower us, partly because there is a next chapter, the chapter in which we can see from where we were, through what we went through to where we end up.  Remember the line 'I'm still here?'  If and when we can look from here to death, we can also put all change into clearer context.  Win

Win, YOU GOT IT.   There are gradations to consider.   

My fear now is that I will be discriminated for an AIDS diag. from others who may want to date me, but they are HIV+.    With my situation I know also fear I won't be accepted by the HIV+ crowd or the AIDS crowd.   I'm not sure if anyone understands what I mean, but I also fear that my latest labs have permanently labeled me in a category which could have been avoided.   I fear medical docs will treat me differently because of a likely changed status.   I fear I will have to say well, that one time I had Aids, but now I don't etc. every time I have a damn doctor's appointment.  If it's this confusing for me and others and we can't even differentiate the difference between the two how do I explain it to others?   I fear I will have to spend the rest of my life explaining the difference to people who ask me now.   I fear I'm gona be added to some other State list and people will call me to ask me to explain my whole life story yet again.   And, I fear most I am closer to some scary illness.   I'd rather be dead than miserably sick so I fear if I choose to end that if it happens my family will forever be haunted by guilt and depression.   Well, these are some of my fears right now.   
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

 


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