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Author Topic: HIV Reality  (Read 5535 times)

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Offline allanq

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HIV Reality
« on: May 21, 2007, 12:18:57 AM »
I was going to add this post to Moffie's thread on "Confessions of a Long Term Survivor," but I wasn't sure if that would be considered hijacking.

Our own experiences and circumstances play an important part in determining our perception of reality.

Here are a few of the variables that I think can color our perception of HIV reality:

1. How long have you been infected? A person who has been dealing with HIV for 20 or more years has a different outlook than someone who has been recently diagnosed. If you lived with HIV through the eighties and early nineties and saw dozens of friends and acquaintances die, that would certainly affect your perception of HIV reality.

2. How is your own health? Are you on meds? Are you on meds but doing pretty well with minimal side effects, or are you dealing with issues such as advanced lipodystrophy, painful neuropathy, or constant nausea and diarrhea? Are the meds working, or are you resistant to most of the drugs currently available?

3. What is your financial situation? Are you living on SSI and struggling to get by, or do you have a job with good health benefits and live comfortably.

4. Do you have a network of friends who provide support, or do you feel isolated and alone?

The totality of our experiences is what determines our concept of reality, and it's different for each of us.

This is why discussions about whether HIV is a manageable disease almost always end in bitterness and acrimony. For some of us, HIV is manageable, for others it isn't. And our perception of whether it's manageable or not can change very easily--loss of a job or insurance, development of drug resistance, or a setback in our health. External forces can also cause a change in our perception of whether HIV is manageable or not. For example, a cutback in funding for AIDS programs such as ADAP, can have a drastic effect on our perception of HIV reality. (Of course, positive experiences, such as starting a new drug regimen that finally works, can also influence our perception of reality.)

Being sensitive to the different realities that exist for all the members of this forum would go a long way toward promoting harmony and support and decreasing anger and bitterness.

Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
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Offline xyahka

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Re: HIV Reality
« Reply #1 on: May 21, 2007, 01:41:16 AM »
Well said, thanks bro!!

Juan Carlos (wishing from bottom of his heart everybody has good experiences while living with hiv/aids)
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 sdcabincrew74

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Re: HIV Reality
« Reply #2 on: May 21, 2007, 02:13:00 AM »
I think you did the right thing not "hijacking" the thread and you bring up a lot of very good points.  Everyone's experience with this virus is different and will always be different.  However, you do manage to hit on the areas that really cause the biggest differences.  I think one thing we all need to remember, as you stated, is that we all have different realities.  We need to be sensitive to each others realities and do your best to either understand or at least respect the others points of view.

Two things I always try to remember when reading these boards:

1.  HIV is just one tiny part of the amazing person that each of us are. 
2.  Do not judge a man/woman, his/her opinion, his/her choices, or his/her life until you have walked a mile in his/her shoes.

We are all just trying to get through the day, and this life, the best way we know how.  We do not always need to agree, but in the end we should all be able to "hug it out" .....

Take care of yourselves and each other, all of us!
The difference between an overnight and a layover is luck!

Offline englishgirl

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Re: HIV Reality
« Reply #3 on: May 21, 2007, 02:45:29 AM »
hear, hear
wouldve said something along the same lines myself if i wouldve had the brainpower!
i consider myself one of the lucky ones according to your criteria Allan and thank my lucky stars every day, but am also very aware of what i could lose - which is why i think it is valuable to find out what is happening with others and what has gone before. i truly hope that we continue to be a diverse online community and that we can appreciate the views, experiences, struggles and personalities of others.
thanks & lots of love to all


"I'm not keen on the idea of the afterlife - not without knowing who else will be there and what the entertainment will be. Personally I'd rather just take a rest." Oscar Berger, PWA: Looking AIDS in the Face, 1996. RIP.

Offline Dragonette

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Re: HIV Reality
« Reply #4 on: May 21, 2007, 08:29:46 AM »
It's just so true. I hope Moffie is reading this, and that he will come back. It's very sad when someone feels the way that he must have been feeling.
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline AlanBama

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Re: HIV Reality
« Reply #5 on: May 21, 2007, 08:59:26 AM »
very well stated, Allan.

We are all at different points along the journey......but it's the same journey.


"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Andy Velez

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Re: HIV Reality
« Reply #6 on: May 21, 2007, 09:29:40 AM »
Well and cogently said, Allan.

Those are good ideas to keep in mind and they bear repeating. It's good to be reminded about where someone might be coming from and what each person may be dealing with. It's good to listen and it's good sometimes to ask questions rather than jumping to conclusion. 

Also, here in the Forums members have all different levels of skill in expressing themselves clearly in writing. With respect to that it can be good to get some clarification rather than jumping immediately to conclusions and positions about what is being discussed or expressed.

Andy Velez

Offline aztecan

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Re: HIV Reality
« Reply #7 on: May 21, 2007, 09:57:19 AM »
Well said Allan.

I have found it always benefits me to remember that, wherever I am and what my experiences have been, others are walking their own path with this bug.


"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline jordan12

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Re: HIV Reality
« Reply #8 on: May 21, 2007, 10:09:15 AM »
Thanks Allan, I had almost decided that the forums were another place for everyone to be frustrated and angry.  I was offline for awhile because of this.   My thought and hope was that this would be a place for support, understanding and above all sensitivity and kindness about the struggle we all experience in our own way.

Thanks for starting this thread, it was very helpful to me.
Life is too short for dram and petty things, so kiss slowly, laugh insanely, love truly and forgive quickly

Offline ChaplinGuy

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Re: HIV Reality
« Reply #9 on: May 21, 2007, 01:08:27 PM »

Just jumping on the bandwagon here to say that indeed, this is very well said. I resisted the urge to post a response to Moffie's little soliloquy, and am glad that I can post a more proactive response to a great thought here instead. Better to consider our differences than to preach experience as gospel. Thanks, Allan!

Offline woodshere

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Re: HIV Reality
« Reply #10 on: May 21, 2007, 01:38:52 PM »
Ten responses so far and not one dissenting opinion, well said.  The effect HIV had, has and will have on each of us is as diverse as each individual who is a part of the HIV family.  We should respect and accept this diversity, rather than try to say one person is right and one is wrong or my HIV experience is worse than your HIV experience. 

Thanks Allan for your great thread.

"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline Jnm594

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Re: HIV Reality
« Reply #11 on: May 21, 2007, 01:59:53 PM »
Being sensitive to the different realities that exist for all the members of this forum would go a long way toward promoting harmony and support and decreasing anger and bitterness.

Ditto, Ditto, Ditto to your post and what everyone else has stated..... 8) 8) 8) 8) 8) 8)
When it gets hard I always listen to my favorite song of all time..........


Offline StrongGuy

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Re: HIV Reality
« Reply #12 on: May 21, 2007, 04:50:28 PM »
Great post...

I would add also that sometimes it's better to just express your views and rid yourself of the expectation that others will meet you half way and see the diversity of HIV (what is true for one person might be not true for another). Many will, but some won't no matter how much you try to reach a middle-ground "holding hands in  unity" moment. It's just life and all you can do is be true to yourself and state your convictions based on your knowledge and life experiences.

"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

Offline pozniceguy

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Re: HIV Reality
« Reply #13 on: May 21, 2007, 05:59:08 PM »
Well said... I have known two persons that were "born" with this bug...that is the status they have had all their life... their absolute age is irrelevant....they are in fact survivors  and have a very good chance of being long term survivors... others  on here and some who may be "lurking" may have just found out  their status...no matter the current age...... they may also be long term survivors one day....so I say  " don't judge other peoples actions/reactions  by your actions/reactions... each is unique and the way we deal with issues varies enormously....Listen a lot and say little usually works out well in the overall scheme of things
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline BT65

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Re: HIV Reality
« Reply #14 on: May 21, 2007, 08:38:17 PM »
Because I am such a diverse person myself, I try to remember everyone else's diversities.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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Offline RapidRod

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Re: HIV Reality
« Reply #15 on: May 21, 2007, 08:49:27 PM »
Now Moffie my friend, what else can be said. People do understand you, even when you think they don't.


Offline ndrew

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Re: HIV Reality
« Reply #16 on: May 22, 2007, 02:45:59 AM »
Hi Allan,

Thanks, this articulates well how the flux of life is even more fluxy (sorry new word I guess) with HIV.


Offline sweetasmeli

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Re: HIV Reality
« Reply #17 on: May 23, 2007, 12:13:55 PM »
What a perfect post, Allan. I join the others in saying: Well said!

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Offline kellyspoppi

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Re: HIV Reality
« Reply #18 on: May 23, 2007, 01:36:49 PM »
 ;D well said alan, and what a reality check :-[! as one who has been blessed with good health, good benefits, stable employment, food, clothing, shelter, it is easy for me to remain positive with this disease.

however, take my ADAP benefits away and, lets just say,  the domino's would fall rapidly, and as a result, my wife and i from grace.  my wife and i have this fear constantly that one day we will lose these benefits, and with 50% drug reimbursement on our health insurance our out of pockets costs would force us into bankruptcy.

so knowing that this could certainly change the complection of things quite rapidly, i must admit, maybe i have been over zealous in my positive posts, not taking the trials and tribulations of others into consideration.

therefore i would like to ask this question of alan, and the others who have visited this thread. when someone who is in a better place with this disease, such as i,  posts messages that exude "life is all good with hiv" , does that create anger for those that are not doing so well?  am i being asked to be more sensitive to others about portraying hiv as "something that is manageable if you maintain a positive attitude" because it is not the same for others?

i would like to believe that it was my positive mental attitude that eventually got me to this place, however,  i certainly do not wish my posts to be a source of irratation to others. since i agree with all of alan's points, i'm willing to be cooperative for the benefit others.  it would be helpful to know how others feel before i revise my content in future posts.

hope we are all clear here that this is not an attack, but a quest for deeper understanding. 8)


Offline allanq

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Re: HIV Reality
« Reply #19 on: May 23, 2007, 02:09:11 PM »

I think people should share both their good and their bad experiences in dealing with this disease. This forum would be a very bleak place if it were used only to post about pain and hardship. I personally never take it as a sign of insensitivity when someone lets everyone know about a great set of lab results, or a great new job, or some other happy event. Maintaining hope about the future has kept me going despite all the ups and downs of this disease over the past 20 years. For me, reading about other people's good fortune often helps to keep my own hope alive.

Recently, Matt ("cubbybear") announced that he had been able to get off disability and get a great new job. I thought that was great news, and I told him so. By relating his own experience, he was giving hope to others who might be considering a similar move. I say this even though I'm on disability myself and will probably not be able to return to work.


Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
Bottom right (Dinner): Prezista, Norvir, Isentress
Bottom left (Bedtime): Sustiva, Trazodone (2), Lipitor, Septra (no longer taking this)
Center: Alprazolam (Xanax)
Not shown: various vitamins & supplements


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