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Author Topic: Why I`m asking all those questions ?  (Read 1803 times)

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Offline SASA39

  • Member
  • Posts: 690
Why I`m asking all those questions ?
« on: March 20, 2007, 08:22:44 AM »
Why I'm asking these questions:

When you ask our doctors you get something like this:

Q:                                                                     A:       

- Special  food regime?                                    - Eat whatever you like

- Special life regime                                         - What do you mean by that?

- Additional supplements like melatonin etc. ?       - Mela …………..What?

-Traveling?                                                    - Maybe ……..we shall see if you could                   
                                                                             get visa

Also my depression is caused by problems that are present and not distant,  and I cannot see a solution:

- Shortage of medicine supply and stopping it when your CD is round 500-600
( 250 two years ago). By that I mean not just HAART shortage but also other medicine like  Fluconazole , and some newest treatments are a SF to us over here.

- Poor overall medical state ( I was yesterday in the control  and a doctor was talking to a colleague  how to provide a pension for a certain patient with 30 years of working , removed spleen , diabetes and HIV because the commission would not admit that he has enough reasons to go for an disability pension )

- I `m not a husband anymore  and my wife has begun to break saying something like this (in her desperate moments):
“ It seems to me that you wanted to be ill just because of  (not )working “  or
It seems to me that you would be happier if I'm infected too “

-Fear as a father for my children and their future because they are so young

-Job conditions : My boss has said to me ( he is OK but he mined his own business )
: “You have two possibilities a) work full time  from 6.45-16.45 mon-sat  b) work from home for a minimal salary or not at all “  and  in this Columbia like transition and post civil war notorious country  finding work is hard when you are 43. ( with no connections “ or a “ little money in your pocket “ )


- Social security cards that have to be removed  with those with bar-code so anyone could see a nature of illness. I have spoken with an only one lawyer involved with this problem and he said to me that they ( Yugo Anti Aids Ass. ) can` t do anything to resolve that problem.

-Lack of social support . There is none social support groups for real in Belgrade , because volunteers are young mostly neg.  and do that for fun or just to be paid minimally until finish their studying .

-Due to a enormous stigma in my country I have to mask myself , lie and be most caution with my words and behaviour and it is a heavy burden for me and for my wife also……………..

So my only solution was to find a help from the outside world using Web.
I was not looking for a glory moments in this site, just answers, and I think that there are no inappropriate questions, just inappropriate answers………everyone of us has a slightly different view to this illness and it is good because the more we know about this illness between ourselves , the more it would be for all of us…………………

In my country there is a saying about illness : “ Do not question the learned one , ask a suffered one “

                                                                                      Alex.
Oct.     `06.  CD4=58  ?    %       VL not perform. ?!?
25.Dec.`06.         203       14        VL= 0
29.May.`07.    broken device        VL=1363
20.June`07     broken device        VL=0
25.Dec `07  CD4=582                  VL=70
14.May `08  CD4=448
29.July `08                                  VL=0
26.Nov `08  CD4=674                    VL=179
16.Mar `09  CD4=554                    VL=0
19.Jan`10 CD4=715               
03.Mar`10                                    VL=0
24.Aug`10 CD4=524                     VL=0
04.Dec`10 CD4=626                     VL=0
15.Sep`11                                   VL=93
17.Nov`11                                   VL=0
05/26 .Jul`12 CD4=713                 VL=0
28.Nov`12 CD4=916                     VL=0
09.May`13                                 VL=0

Offline SASA39

  • Member
  • Posts: 690
Re: Why I`m asking all those questions ?
« Reply #1 on: March 20, 2007, 09:17:00 AM »
And yes ...............
my father in low wear a pacemaker and he was clinicaly dead once and just as I`m writing this a mother in low has been visit the doctor too
Diagnose : extremly dilatated left heart chamber.........possibility of stroke without strong medications 90%..........So I have to hide because I do not wanna more troubles...............for others...........
AL
Oct.     `06.  CD4=58  ?    %       VL not perform. ?!?
25.Dec.`06.         203       14        VL= 0
29.May.`07.    broken device        VL=1363
20.June`07     broken device        VL=0
25.Dec `07  CD4=582                  VL=70
14.May `08  CD4=448
29.July `08                                  VL=0
26.Nov `08  CD4=674                    VL=179
16.Mar `09  CD4=554                    VL=0
19.Jan`10 CD4=715               
03.Mar`10                                    VL=0
24.Aug`10 CD4=524                     VL=0
04.Dec`10 CD4=626                     VL=0
15.Sep`11                                   VL=93
17.Nov`11                                   VL=0
05/26 .Jul`12 CD4=713                 VL=0
28.Nov`12 CD4=916                     VL=0
09.May`13                                 VL=0

Offline SASA39

  • Member
  • Posts: 690
Re: Why I`m asking all those questions ?
« Reply #2 on: March 20, 2007, 09:18:05 AM »
Feelin ALONE , NAKED IN THE DARK..........
Oct.     `06.  CD4=58  ?    %       VL not perform. ?!?
25.Dec.`06.         203       14        VL= 0
29.May.`07.    broken device        VL=1363
20.June`07     broken device        VL=0
25.Dec `07  CD4=582                  VL=70
14.May `08  CD4=448
29.July `08                                  VL=0
26.Nov `08  CD4=674                    VL=179
16.Mar `09  CD4=554                    VL=0
19.Jan`10 CD4=715               
03.Mar`10                                    VL=0
24.Aug`10 CD4=524                     VL=0
04.Dec`10 CD4=626                     VL=0
15.Sep`11                                   VL=93
17.Nov`11                                   VL=0
05/26 .Jul`12 CD4=713                 VL=0
28.Nov`12 CD4=916                     VL=0
09.May`13                                 VL=0

Offline SASA39

  • Member
  • Posts: 690
Re: Why I`m asking all those questions ?
« Reply #3 on: March 20, 2007, 10:06:28 AM »
And I`m sorry if I`m sound like downbringer and present my emotional status to this forum but you have to beleive me that I have no none else to turn on to.....................
Oct.     `06.  CD4=58  ?    %       VL not perform. ?!?
25.Dec.`06.         203       14        VL= 0
29.May.`07.    broken device        VL=1363
20.June`07     broken device        VL=0
25.Dec `07  CD4=582                  VL=70
14.May `08  CD4=448
29.July `08                                  VL=0
26.Nov `08  CD4=674                    VL=179
16.Mar `09  CD4=554                    VL=0
19.Jan`10 CD4=715               
03.Mar`10                                    VL=0
24.Aug`10 CD4=524                     VL=0
04.Dec`10 CD4=626                     VL=0
15.Sep`11                                   VL=93
17.Nov`11                                   VL=0
05/26 .Jul`12 CD4=713                 VL=0
28.Nov`12 CD4=916                     VL=0
09.May`13                                 VL=0

Offline Christine

  • Member
  • Posts: 1,069
Re: Why I`m asking all those questions ?
« Reply #4 on: March 20, 2007, 11:25:55 AM »
Alex,
You are not alone. We are hear to listen. It is very hard for you. You have burdens that many of us do not have.

I'm hear to listen.
Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline Robert

  • Member
  • Posts: 2,644
Re: Why I`m asking all those questions ?
« Reply #5 on: March 20, 2007, 12:20:41 PM »
alex

I know we're worlds apart and we'll never meet but we  still worry and care about you .  You can never ask too many questions.   Sometimes you might not get too many response and it probably is just because many of us feel so frustrated that we cannot help you.  But believe me, people from all over the world are reading what you write everyday and we hold you dear to our hearts. 

robert
..........

Offline Bucko

  • Member
  • Posts: 1,947
  • You need a shine, missy!
    • The Spin Cycle
Re: Why I`m asking all those questions ?
« Reply #6 on: March 20, 2007, 01:09:22 PM »
Alex-

Please understand the the chatter around here can sometimes seem a distraction to dealing with bigger issues. But there is support in the chatter, a feeling of camaraderie and fellowship, of companionship and it eases the feeling that we are not alone.

But the chatter is also largely based on cultural distinctions which must be all but unintelligible to you. This must increase your own sense of isolation, and that is regrettable as it is certainly not the intention.

Coping with life in these perilous times is tough enough. Add the burdens of living with HIV/AIDS increases every stress by a factor of ten. I cannot imagine what life with HIV is like outside of the bubble of the advanced medical care available in most of the Western World. Knowing that help and, I guess, life is dependant on geography is terrible, horrible, inhumane.

The only thing I can compare it to is the 1980s, when there was no treatment available for anyone and I lost most of my friends, or somewhat later when the crude monotherapies poisoned the few who remained. It was a time without hope.

But if all we can do is respond to your posts, empathize and offer guidance where it's possible, then it's better than struggling through this all alone. Your presence here is very important and I hope that you keep up asking all the questions you can. In the old ACT-UP days we used to say that KNOWLEDGE=POWER, and it's still true.

Brent
(Who reads Alex's posts but rarely has anything constructive to add)
Blessed with brains, talent and gorgeous tits.

The revolutionary smart set reads The Spin Cycle at least once every day.

Blathering on AIDSmeds since 2005, provocative from birth

Offline Val

  • Member
  • Posts: 938
  • Praxitèles -- Satyre au repos
Re: Why I`m asking all those questions ?
« Reply #7 on: March 20, 2007, 01:39:42 PM »
Since Bucko mentioned it, I'll give you all a little update about Alexander's situation.  He is actually living with HIV as we, from the wealthy nations of Western Europe and North America, lived with it during the early 80s!  I know it seems  absurd, but you have got to believe in what he says.

We spent some hours on the phone every week and when I hung up,  I just realize how lucky we all are.   I also can assure you that Alexander is a fighter and am convinced he'll get through this.  However, it is not easy at all.  It is the end of the world, indeed!

Just to give you some insights, I travelled once through what used to be Yougoslavia from North to South.  And believe me that was a weird experience.  They would ask me my ID, passport in almost every single stop the bus would make!  In addition, you had  to get your feet, hands, shoes and your whole person "cleaned up".  The thing I remember the most about that trip was the surveillance and supervision of everyone at all times.

Things may have changed a bit, but not much...

So, thanks Bucko for bringing up such a relevant point and comparison.  Yes, we do have a forum member living with HIV in more or less the same conditions as we did through the horrible 80s!

Val
___
___
Arthus Bertrand
http://www.yannarthusbertrand.com/yann2/affichage.php?reference=TVDC%20YABFR084&pais=France
Ali Mahdavi
http://asyoudesireme.online.fr/index.htm
Richard de Chazal
http://www.richarddechazal.com/
Daniel Nassoy
http://www.danielnassoy.com/pages/galeries_portraits_2.html
Photography:
The word comes from the Greek words φως phos ("light"), and γραφίς graphis ("stylus", "paintbrush") or γραφή graphê, together meaning "drawing with light" or "representation by means of lines".

Offline Bucko

  • Member
  • Posts: 1,947
  • You need a shine, missy!
    • The Spin Cycle
Re: Why I`m asking all those questions ?
« Reply #8 on: March 20, 2007, 03:11:03 PM »
It is all the more galling when one is shut out from available courses in treatments simply because one was born on the other side of a wall. It troubles me deeply, yet feel powerless to do anything beyond empathize.

Brent
(Who lived in Europe and saw such divisions first-hand himself)
Blessed with brains, talent and gorgeous tits.

The revolutionary smart set reads The Spin Cycle at least once every day.

Blathering on AIDSmeds since 2005, provocative from birth

Offline purplerain

  • Member
  • Posts: 100
  • finally figured out the pic thing
Re: Why I`m asking all those questions ?
« Reply #9 on: March 20, 2007, 09:35:28 PM »
This can be hard 2 hear sometimes and this in no way takes away from the genuine fears U are facing but when I find myself listing everything that is wrong in my life it helps me if I can also focus on everything that is good in my life.  Just creates a balance in my head and helps keep my depression from getting out of control.  No matter what happens keep your head up and keep up the fight.  I wish u nothing but the best Alex.

Jag

 


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