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Author Topic: Dec Issue of Poz - Very confused & Scared  (Read 2131 times)

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Offline Delby

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  • Posts: 103
Dec Issue of Poz - Very confused & Scared
« on: November 21, 2007, 08:24:33 AM »
Dear All,

As some of you know, i was diagnosed a year ago and i am having a terrible time of coming to terms with it. Mainly because i am so confused as to what it 'really' means to be HIV +. My doctor tell me its a 'chronic manageable illness just like diabetes'. When i told her how scared and frightened i constantly am, mainly that i will die from AIDs and suffer horrendously -  she laughed and said 'you have nothing to be afraid, and that she will gurantee me that if i take the meds, i wont die of AID's and i will have a good and normal life'.

I came home feeling a little more positive and optimistic for the future. I have also listened to some very caring, and knowledgable people on these forums and they have an optimistic view as well. However, all my optimism has been destroyed today from the articlew written by Regan Hofmann i read in Dec's issue of POZ, titled Precious Stone. All my optimism has been replaced by my previous beliefs of the disease. That i'm going to die of AID's and even if i do live another 20 yrs at best, then its going to a horrendous struggle, constantly fighting illness. My attitude towards what the doctors are telling me has been very cynical, and i believe deep down their feeding me a load of BS just to keep me happy and to get me out of their office. I never truely believe that i can live a good life with HIV and this article has just proved all my so called 'out of date and irrational' thinking', completely true.

The article states:

'Later, when I ask Stone how she feels while leading the charge at a charity ball, she skirts the issue of her methodology, focusing on the reason for it. Suddenly, the sexy glam and glitter are muted by the stark truth of her words. She says to me, knowing full well that I am HIV positive, ďRight now, AIDS is not a survivable illness. I wish that it were a survivable illness. It is sometimes manageable, it is always painful, it is always difficult. Everyone with AIDS will die from AIDS and it will never be easy. Iíve spent too much time in hospitals and hospices and orphanages around the globe to pretend differently. People can live longer and more hopeful lives, but it is a death and it is a bad death. And I want people to understand that, because I want people to be more careful and more thoughtful, and I want people to work harder toward [finding] a cure and a vaccine.Ē She reminds me that even when the numbers dip, they are misleading. ďThere were 40 million people with AIDS. Now, there are only 39.5 million people with AIDS,Ē she says. ďAnd thatís not because theyíre getting better or getting cured; itís because theyíre dead.Ē'

Another point that has really upset me and again hit the core of my beliefs is set out below. I asked the doctor and others whether i am living or dying from HIV. They all say living. However, i have never felt that i am living with it, no more than a terminal cancer patient has 1 yr to live and is 'living' with cancer. I have always felt that this disease is still terminal, but the meds have just given us a couple more yrs of hell. The article states:

'I wonder how she feels about helping to save millions of peopleís lives. Her tone softens and she says, ďI think youíre only the second person thatís ever said that to me. I think  that only one other person has said that out loud to me. I donít think about it ever. Where we are now isnít my goal. I donít have time to think about that, because 39.5 million people are dying.Ē'

I am sorry if i sound so down, but i dont know what to believe. I'm sick of thinking this is ok, and there are people living normal lives, only to read something like that, which basically confirms all my darkest fears. I've been seeing a therapist, a counsellor, and been trying so hard to change my way of thinking, but whats the point when you read something like that? Everything i feel is basically true - i am going to suffer horrendously whilst i'm alive and then i will die a horrible death from AID's. I'm totally confused and so frightened. I'm sorry if i have scared anyone else, please, its not my intention at all. I just want to hear people's opinions on the matter.

My Best

J

Offline newt

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Re: Dec Issue of Poz - Very confused & Scared
« Reply #1 on: November 21, 2007, 09:02:28 AM »
I went in October to Site B, the famous MSF clinic in Khayelitsha, and the Crusaid Clinic in Gugulethu, everyone looked well and happy, people aren't dying there like Miss Stone says, they're mostly getting jobs if they can and having babies and singing and dancing...oh, and having neuropathy and fat loss from the d4T.

I went yesterday to an event for a women's HIV charity, and there were women and men there you were HIV-positive before Miss Stone even crossed her legs for the camera.  Not to say the event wasn't coloured by thoughts/memories of people who didn't make it, but they who were there were not too grizzled looking, more elegant, energised, alive and worried about getting old.

HIV is survivable if you have access to meds. Amfar is an international NGO and needs doom, gloom and drama to justify its existence.  And, true WORLD WIDE, access to meds is not always good and many, many people therefore die horrible and unnecessary deaths from AIDS-related illnesses. People doing well on meds still die from HIV-related conditions. But, provided the meds are not too disagreeable for you, the end of life issues you will be facing are very likely to be those of old age. Not the unusual mid-20s and mid-30s tying up and going down of life that happened to people with HIV/AIDS in the 80s and 90s.

As a rule, however well-meaning, however committed, the words of a famous person, especially one backed by a press office fronting a charity seeking to raise funds, have NOTHING TO SAY to the individual with HIV in a country with good access to meds. << Matt's prinicple of death by charity PR. The question of living, surviving or dying is for you to decide.

- matt


Edited for grammar etc
« Last Edit: November 21, 2007, 12:18:45 PM by newt »
"The object is to be a well patient, not a good patient"

Offline DanielMark

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  • Posts: 1,475
Re: Dec Issue of Poz - Very confused & Scared
« Reply #2 on: November 21, 2007, 10:47:15 AM »
Hi J,

Why would you allow one article in one magazine to upset you this much? If you go through life doing that then you are basically handing over your personal power to strangers. You canít really afford to do that now. Try to keep things in perspective before you make yourself sick. Your health will thank you for it.

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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  • Joined: March 2006
Re: Dec Issue of Poz - Very confused & Scared
« Reply #3 on: November 21, 2007, 10:53:53 AM »


While I know that AIDS may / will kill me, it'll likely be later rather than sooner.  As has been mentioned before, a lot depends on where you live.  I'm fortunate to live in a country that has meds available and to have a job that provides insurance that'll pay for them... along with the associated medical expenses (labs, etc).  Most states have programs set up to provide meds and labs, but the availability depends on the particular state. 

In the meantime, I try to live healthy.  I exercise, try to eat well, drink lots of water, and take my meds.  I've been on Atripla for almost a year, and so far, so good.  I know that I'll likely have resistance issues down the line.  I know that I'll likely find some meds don't work well or have side effects that are intolerable.  Who knows what the long term side effects for all these drugs are.  For me, none of that is happening now.  For now, I go to work as usual.  I do things around the house as usual.  I live my life as usual.  I will do so until things change and force me to do differently.  The only other option I see, for me, is to stress about what may happen in the future.  I don't see that being pleasant or beneficial to my health, so I don't think like that. 

I try to base my thinking on how I feel physically and how I'm doing medically.  Physically, I feel fine... there's some damage from PCP last year, but it's nothing I can't handle.  Side effects from the meds are negligible for now.  Medically, my labs are improving.  My CD4's are up and my viral load is dropping.  I really don't know how else to feel about all this other than that I'm doing fine. 

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 Miss Philicia

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  • Posts: 23,565
  • celebrity poster, faker & poser
Re: Dec Issue of Poz - Very confused & Scared
« Reply #4 on: November 21, 2007, 10:56:02 AM »
I agree with DanielMark.  If you're allowing a magazine article to upset you then you need to work on that.  There's an obvious amount of difference in HIV treatment between the UK, where you reside, and the larger world -- I'm not sure why, after one year's diagnosis, you don't understand this rather simple concept.

I'd really advise looking into finding an HIV support group in your area and committing yourself to attending regularly and/or locate someone for one-on-one sessions.  You really need to inform yourself and become more comfortable with the subject.  If you can't control needless worrying you will only have more issues down the road.
"Iíve slept with enough men to know that Iím not gay"

Offline northernguy

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Re: Dec Issue of Poz - Very confused & Scared
« Reply #5 on: November 21, 2007, 11:12:03 AM »
Delby you can choose to live your life in fear (and that really wouldn't be "living") or you can make a realistic assessment of your condition and get on with living.  Yes, you have a serious disease but you could well live for 30+ more years, or longer as the meds improve.  Yes the meds have side-effects but they are less than before, and do not have to stop you from enjoying life.  Nobody here has a crystal ball to tell you how your condition will play out.

As Newt pointed out, Ms Stone is raising money for a charity that fights AIDS, so she's going to paint it as a bleaker picture than many here will tell you.  She is also from the USA, where access to meds is not as generous as it would be in countries with universal healthcare, and I find this sometimes leads to a more negative tone.
Apr 28/06 cd4 600 vl 10,600 cd% 25
Nov 8/09 cd4 510 vl 49,5000 cd% 16
Jan 16/10 cd4 660 vl 54,309 cd% 16
Feb 17/10 Started Atripla
Mar 7/10 cd4 710 vl 1,076 cd% 21
Apr 18/10 cd4 920 vl 268 cd% 28
Jun 19/10 cd4 450 vl 60 cd% 25
Aug 15/10 cd4 680 vl 205 cd% 27
Apr 3/11 cd4 780 vl <40 cd% 30
Jul 17/11 cd4 960 vl <40 cd%33
April 15/12 cd4 1,010 vl <40 cd% 39
April 20/12 Switched to Viramune + Truvada
Aug 2/12 cd4 1040, vl <40, cd% 38
Oct 19 cd4 1,110 vl <40 cd% 41

Offline northernguy

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Re: Dec Issue of Poz - Very confused & Scared
« Reply #6 on: November 21, 2007, 11:12:43 AM »
Delby you can choose to live your life in fear (and that really wouldn't be "living") or you can make a realistic assessment of your condition and get on with living.  Yes, you have a serious disease but you could well live for 30+ more years, or longer as the meds improve.  Yes the meds have side-effects but they are less than before, and will not necessarily stop you from enjoying life.  Nobody here has a crystal ball to tell you how your condition will play out.

As Newt pointed out, Ms Stone is raising money for a charity that fights AIDS, so she's going to paint it as a bleaker picture than many here will tell you.  She is also from the USA, where access to meds is not as generous as it would be in countries with universal healthcare, and I find this sometimes leads to a more negative tone.
Apr 28/06 cd4 600 vl 10,600 cd% 25
Nov 8/09 cd4 510 vl 49,5000 cd% 16
Jan 16/10 cd4 660 vl 54,309 cd% 16
Feb 17/10 Started Atripla
Mar 7/10 cd4 710 vl 1,076 cd% 21
Apr 18/10 cd4 920 vl 268 cd% 28
Jun 19/10 cd4 450 vl 60 cd% 25
Aug 15/10 cd4 680 vl 205 cd% 27
Apr 3/11 cd4 780 vl <40 cd% 30
Jul 17/11 cd4 960 vl <40 cd%33
April 15/12 cd4 1,010 vl <40 cd% 39
April 20/12 Switched to Viramune + Truvada
Aug 2/12 cd4 1040, vl <40, cd% 38
Oct 19 cd4 1,110 vl <40 cd% 41

Offline StrongGuy

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  • Posts: 492
Re: Dec Issue of Poz - Very confused & Scared
« Reply #7 on: November 21, 2007, 01:24:47 PM »
I've seen/heard very different takes than the opinion stated by Stone from my doctor, from lots of information I've read, and from witnessing the lives of some of the people I know -- but everyone is going to have their own take on it and I have a lot of admiration for Sharon Stone's work.

Personally, when anyone starts talking or predicting in "absolutes" a big red flag goes up --  because I know life is not a singular path for any disease. I posted an article which has a very different outlook a week or so ago (you can PM me or scour through my coments if you want to see it) from medical professionals outlining their take on the state of HIV (mostly centered on those who have access to treatment). Who's right? Only time will tell. But I'm not fearful. I've dealt with so much in my life that If I have to I deal with again - I will but in a healthier way and empowered with a lot more good knowledge.

The way I look at it, my HIV may progress one day or it may be something else that kills me. I'm doing everything I'm supposed to to ensure that doesn't happen. But if it does, at least I spent those days leading up to it doing what makes me happy, not frozen scared.

Keep your chin up - you're going to hear many takes on this disease. Process, verify, question. Life is not static. And, in my opinion, perspective shouldn't be either. And I'd also second (as usual) Newt's smart comment above.

Good luck :)

Edited to add: I read the article and thought it was great and admire Sharon Stone for all she has done. And while I don't agree with some of her opinions, she should be commended. And Regan did a great job of describing so poignantly the heart inside of Stone.
« Last Edit: November 21, 2007, 03:55:47 PM by StrongGuy »
"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 budndallastx

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Re: Dec Issue of Poz - Very confused & Scared
« Reply #8 on: November 21, 2007, 02:05:23 PM »
Delby, when I was diagnosed I thought the doctor had read me a death sentence but today's medicine has made it a chronic manageable disease.  I personally didn't know anyone who has had HIV so my resources were limited to the doctor and what I read.  I was scared S**tless to say the least for a while.  I have come to terms with this and now realize that as long as I have good medical care and access to drugs, I will have a long life.  I just got back from a cruise and the majority of the people I met have been HIV+ for over 10-15 years.  One guy was 20 years positive which was incredible since he appeared to be healthier than me!  It's was very motivational to meet these people.

We are will react to various diseases differently.  Studies have shown the way you mentally face your condition contributes tremendously to your ultimate outcome.  Believe you'll survive and do everything in your power to make that happen.  Be positive (no pun intended) in your outlook.  Today is the first day of the rest of your life so make the most of it !
Meds since: 11/20/2006
Sustiva / Truvada
12/08/2008 VL:<48 CD4 622 (38%)   
9/8/2008 VL:<48 CD4 573 (30%)
5/2008 VL:<48 CD4 464 (30%)
1/2008  VL: <50  CD4 425(28%)
9/2007   VL: <50  CD4 465 (27%)
6/2007   VL: <50   CD4 443 (26%)
3/2007  VL: <50   CD4 385 (25%)
12/2006 - VL: <50   CD4: 384 (25%)
11/2006 - VL:  22K  CD4: 208 (18%)

Offline Delby

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  • Posts: 103
Re: Dec Issue of Poz - Very confused & Scared
« Reply #9 on: November 22, 2007, 10:09:31 AM »
Hi everyone,

Firstly, thank you to all of those that made the effort to reply and provide me with some reassurance and other their advice.
To Matt (Newt) - thank you for enabling me to see the logic and rational for Stone speaking in such a manner.
To Daniel - as always your their to help and encourage me. Your words are always a comfort.
To David - So glad to hear your doing great on your regime and may it long continue for you. Thank you for your kind and reasurring advice.
To Philly -  Thank you and i am trying a support group -  in fact i'm trying everything in my power to beat this mentally. Thank you again buddy.
To Northern Guy - Your words are meaningful and appreciated and i've taken on board what you've said.
To Strongguy - Very wise words and again i've taken in what you've said and hope to have that attitude one day soon.
To budndallas - Thank you for replying and it is an inspiration to realise people are doing well with this 20yrs + down the line.

To all of you thank you, and to anyone else you wants to comment on my post, i welcome any thoughts.
I'm not sitting back and letting this defeat me, i get up out of bed every morning and face the day with vigour. But i guess my main point was, i dont want the doctors or the media to pull the wool over my eyes, as i'd rather know what i'm in for or likely to face so i am empowered to make choices. Thank G-d at the moment i am feeling 'healthy' and i just value my health so much that i hope it continues. To all of us in this struggle, to the brave, to the weak, to the strong, to the bold, to everyone that deals with this...you'r all fantastic and we must keep this level of support up for one another. I've been on many different forums, such as diabetes, MS, Cystic Fibrosis, but none can compare to the level of warmth, kindness and compassion that is dished out daily on these forums. May today and tomorrow be good for us all

:)


Offline BirdBear718

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Re: Dec Issue of Poz - Very confused & Scared
« Reply #10 on: November 22, 2007, 10:52:38 AM »
Delby, I believe the words of wisdom here  are spoken from the heart...I second each of their words.
The only additional thing I can offer to you is a hug with my arms wrapped around you.  I hope you can feel that....I hope you can.

Offline cayucosguy

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Re: Dec Issue of Poz - Very confused & Scared
« Reply #11 on: November 22, 2007, 12:13:27 PM »
Delby -

I can only respond based on my own experiences.  I've been poz since the summer of 1984, and on meds for a little over 10 years now.  I've had a couple of OI's, but I believe that they were my own fault for not starting meds soon enough.  The health issues that I deal with today are really based upon the fact that I'm over 50 now, and that I did way too much partying in my younger days.

There are those days when I feel a bit down, but who doesn't?  Talk to some of us in these forums before you dwell on anything negative, such as the perspective of the article.  A little reassurance and another perspective can really help to stave off the anxiety you experienced after reading it.

If you want, PM me for my phone number.  I can always be reached if you need someone to talk to.

Hugs, Vince

 


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