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Author Topic: A roller coaster ride.....  (Read 2479 times)

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Offline skycee

  • Member
  • Posts: 72
  • oh you are having a bad day? Did you die?
A roller coaster ride.....
« on: December 20, 2012, 07:25:56 AM »
So i was at salon today and picked up a journal that had an article from a mum that lost her child  to hiv, she was dx at age of 18 and had a cd4 of 17 when she started ARV she neva quite responded  to drugs and died about 5yrs later (this year), she gave brief details of issues she had before she finally died.

i couldn't finish reading article, i dropped it and threw magazine far away from me, and this voice in my head kept say, you still haven't realized depth of what you are dealing with, "you still feel its fun and games"...and i sank into depression after reading that article.

There are days I'm up and about and there are days, i feel so beaten up and can't find wind in my sail, i just sit and wonder, what have i don  to myself, how could i have placed this restriction on my future, what is price  to redeem myself...

Right now i feel so down. I'm not on meds yet and that alone is mind bugging, keep wondering what if my cd4 plumates from 546  to below 200 and I'm just there living healthy not having slightest idea what's going on in me. i just feel like crying. What have i done  to my future.

Lord i need help....help me Lord, can't do this without you....
Infected September's 2012
Seroconverted October 2012
Elisa test- indeterminate 20th November. 2012
Rapid test - Negative 23th November 2012
Elisa test - Positive 10th December 2012
CD4 - 546, 12th Dec 2012
CD4 600+, VL 6702 26th March 2013

Offline Cojo

  • Member
  • Posts: 198
Re: A roller coaster ride.....
« Reply #1 on: December 23, 2012, 04:24:09 PM »
Hey Sky

Your post really resonated with me. Sometimes I feel quite optimistic about this bug and my logical side reminds me that the virus can be controlled by ART and that many folks are living happy, normal lives. The other times there is a deep seeded fear that this is deadly and my very mortality may be living on a hope and prayer. It seems at times that the polar opposites in thought can coexist and that space in the middle for me fluctuates between faith and fear.
I guess none of us, + or - really do know the time nor the hour....
May 2011 - Tested Positive
June 2011 - CD4 330   16%   VL182,000 no resistance
Oct 6, 2011 - CD4 300  20%  VL 60,000
Oct 7, 2011 - start Truvada / Isentress
Nov 29, 2011 CD4 280 26% VL 54
Feb 7 2012 CD4 260 25% UD!
Mar 20 2012 CD4 400 28%
June 2012 CD4 330 26% UD
Sept 2012 CD4 450 32% UD
Dec 2012 CD4 310 28% UD
May 2013 CD4 500 32% UD
Oct 2013 CD4 460 33% UD
May 2014 CD4 360 33% UD
Aug 2014 swap out Isentress for Tivicay
Oct 2014 CD4 320 33% UD

Offline skycee

  • Member
  • Posts: 72
  • oh you are having a bad day? Did you die?
Re: A roller coaster ride.....
« Reply #2 on: December 26, 2012, 05:59:33 AM »
Thanks cojo  for relating with my fears, that creeps in every now and then....as of now, I feel healthy, occasionally body aches here and there buh my mind won't rest even after my doctor says I wld be fine and shouldn't worry or stress. Owing to the fact that I don't have any form of physical support now, I think I'm doing quite well holding this together and still manage to get the motivation to go for my flying lessons.

I know the ultimate end of every being is death, however no one wants to die and no one wants to experience a painful death that wld leave family and friends in anguish and i think that where most of my worry lies.

Hopefully someday I would live way above these tots.....for now I just pray about them and find peace in Christ.
Infected September's 2012
Seroconverted October 2012
Elisa test- indeterminate 20th November. 2012
Rapid test - Negative 23th November 2012
Elisa test - Positive 10th December 2012
CD4 - 546, 12th Dec 2012
CD4 600+, VL 6702 26th March 2013

Offline mecch

  • Member
  • Posts: 11,910
  • red pill? or blue pill?
Re: A roller coaster ride.....
« Reply #3 on: December 26, 2012, 07:47:29 AM »
Skycee, you have got to snap out of this dark thinking about HIV.  You are thinking about HIV and AIDS tragic stories, horror stories, and applying them to your life now and your future.  First of all, this is the THIRD worst way to live well being HIV+.  (The WORST way is denial that HIV is serious, and not taking medicine. The SECOND worst is being HIV+ and having no access to medical care).

I want to ask you to again clarify -  that you will have medical care and access to meds in your life.  If so.... HIV IS A VERY MANAGEABLE HEALTH CONDITION. 

It may be human to have empathy and sympathy and sadness and FEAR, a little bit of involuntary fear, yes, when you read a horror story about a disease.  But you have GOT to apply all your intelligence to keeping rational and optimistic about today and the future.

Please stop applying a few bad stories, and/or stories from 20 years ago, and/or the hideous conditions of people less fortunate than you, to yourself.  Millions of HIV+ people are living healthy, yes healthy, and productive lives. They are not slowly painfully dying lingering horrible deaths.  Snap out of it man.

Or explain why you think you have only this hideous destiny, maybe I am missing something here.

The young person in that article didn't have, at all, an experience that relates to yours.

You just got HIV and its normal to have rolling thoughts but the way to stop them is learning about the disease, the facts, how it all likely works out in YOUR situation, and so on. 


« Last Edit: December 26, 2012, 08:05:21 AM by mecch »
From each, according to his ability; to each, according to his need 1875 K Marx

Offline skycee

  • Member
  • Posts: 72
  • oh you are having a bad day? Did you die?
Re: A roller coaster ride.....
« Reply #4 on: December 26, 2012, 02:51:53 PM »
Thanks Mecch for the response, i do appericiate....i needed the strong firm words....it does help  to snap out of those bad thoughts.

i should have access  to meds, I'm from a west african country, buh currently learning  to fly  to be a commercial airline pilot in south africa. Though hralth care is really shitty back home, i really don't know what  to expect when i go back home.

For now, I've not been able  to find a support group and my family is unaware of ny status, hence is quite painful when they do call  to ask how I'm doing i have  to put up a front that all is well.

i also fear that i may no be able  to get a job when I'm done with my program, which I'm determined  to finish. Securing a good job wld definately help me a lot as regards affording meds and the life long healthcare, however if for some reason i can't get a job due  to my status, i fear been a liability  to anyone.

I'm actually doing a great job managing this all by myself, keeping it from friends and family, and still manage  to go on my training flights and study for my exams, buh like we all know every now and then the mind tends  to drift and can thinkof the worst their is. .
Infected September's 2012
Seroconverted October 2012
Elisa test- indeterminate 20th November. 2012
Rapid test - Negative 23th November 2012
Elisa test - Positive 10th December 2012
CD4 - 546, 12th Dec 2012
CD4 600+, VL 6702 26th March 2013

Offline mecch

  • Member
  • Posts: 11,910
  • red pill? or blue pill?
Re: A roller coaster ride.....
« Reply #5 on: December 26, 2012, 03:47:46 PM »
I hear all that.

Sounds like you need to start finding people to talk to in both the countries that matter for the moment - that is yours, and South Africa, too, right?

Not being sure about what kind of care is going to be available is incredibly stressful.  The best thing would be to find out the facts. Then you can make sure to be making decisions and plans to be in the right place in the right situation, the best possible, when the time comes you will need the meds.  Just find out how other people are managing. 

(For example, I had ALL SORTS of fears based on my American upbringing about what an HIV diagnosis could mean, but some of these didn't apply at ALL to my situation in Switzerland. But it was ingrained in me - that my finances and access to health care is precarious.  Even though in my life in Switzerland its much less precarious.   The Swiss people had to point out all my misunderstandings and useless fears, and several times, before I stopped panicking when i thought about it.)

So you don't need to tell your friends and family.  Are you training or studying away from your family?  That might help you to stay discrete, as that seems important for the moment.  But you probably do need to start talking to HIV+ people or any agencies that can inform you how it all works out in your present and future locations.

Just offering that as my suggestion, cause it helped me a lot to chill.

You are understandably sitting on a fence healthwise and emotionally. You should feel grateful that your immune system is dealing for the moment and that you know, and that you know so early in infection. 

Please don't let fears and anxiety about access to health care - which are completely human and normal - cloud your understanding of HIV the virus and hiv/aids "disease".  The treatment works -- medicine knows very well how to keep someone healthy and living a long life, with HIV. 

Your primary challenge may be to make sure you get the health care.
From each, according to his ability; to each, according to his need 1875 K Marx

Offline skycee

  • Member
  • Posts: 72
  • oh you are having a bad day? Did you die?
Re: A roller coaster ride.....
« Reply #6 on: December 26, 2012, 04:22:33 PM »
Thanks once again Mecch.

I've been speaking with doctor here about options and I'm in the process of upgrading my medical aid plan, so as  to cater for treatments and care i wld need via the private hospitals, i understand the drugs are subsidized and much cheaper at govt. Hospitals buh the services are usually crappy. So hopefully i have cover here.

I've search the web as regards information on care for people living with hiv back home and have a list of hospital where i can obtain care, buh like i said, things back home don't ever work as should, so I'm still skeptical about it.

I'm studying away from home, my folks are all in west africa and I'm here in south africa. i can't tell my friends atleast just yet cos i don't know how they would take it and who can keep my status private. i spend most. Of the time with them as it helps me take my mind off hiv,  however they are not in the know.
Infected September's 2012
Seroconverted October 2012
Elisa test- indeterminate 20th November. 2012
Rapid test - Negative 23th November 2012
Elisa test - Positive 10th December 2012
CD4 - 546, 12th Dec 2012
CD4 600+, VL 6702 26th March 2013

Offline Cojo

  • Member
  • Posts: 198
Re: A roller coaster ride.....
« Reply #7 on: December 31, 2012, 06:20:52 PM »
Thanks for this direct and challenging response Meech. Like the OP, I tend to allow my mind to really zone in on the catastrophic potentials (almost all beyond the capacity to happen) and live in dread and fear. I came out in the early 90's when the disease was much different and I shamefully admit, I never took the time to really pay attention to the advances and realities of the last two decades of science progress because HIV happened to the " other guy ".

I find I get most rattled when I read about someone who has died from the disease in these modern days. I am mindful of the fellow who is the activist who was 44 (I'm 45!) or the porn star Josh (?) who died at 39 a few weeks ago. I assume that they had aggravating circumstances that we will soon discover, but upon the news breaking, it send me to that place of deep fear.

I also find when my labs are coming up, all the potential what if's percolate. My last labs a few weeks ago had my numbers drop from 450 to 310... I am still trying to shake the anxiety that it has caused me albeit my doctor didn't seem concerned.

So as I started with, a big thanks for your insights and passing along a compassionate challenge. Any other strategies that you have used to keep a level head are always appreciated!



May 2011 - Tested Positive
June 2011 - CD4 330   16%   VL182,000 no resistance
Oct 6, 2011 - CD4 300  20%  VL 60,000
Oct 7, 2011 - start Truvada / Isentress
Nov 29, 2011 CD4 280 26% VL 54
Feb 7 2012 CD4 260 25% UD!
Mar 20 2012 CD4 400 28%
June 2012 CD4 330 26% UD
Sept 2012 CD4 450 32% UD
Dec 2012 CD4 310 28% UD
May 2013 CD4 500 32% UD
Oct 2013 CD4 460 33% UD
May 2014 CD4 360 33% UD
Aug 2014 swap out Isentress for Tivicay
Oct 2014 CD4 320 33% UD

Offline Joe K

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  • Member
  • Posts: 3,776
  • 31 Years Poz
Re: A roller coaster ride.....
« Reply #8 on: December 31, 2012, 08:46:22 PM »
Hey Skycee & Cojo,

It's very normal to fear the unknown and the challenges of HIV are not for the faint of heart.  In a way, fear can be useful, but only as a caution, not a way of life.  I've been poz for 28 years and one way I control my anxiety is to gauge how I am doing, by how I am feeling physically and mentally.  Numbers and lab tests are merely indicators of your current health and there are many variables, such as the time when you get your labs drawn, that can create swings in numbers.

I suggest that when you begin to feel anxious, because that is what you are most probably experiencing, you stop, take five deep breaths and think about how you feel.  For over 20 years, my health looked horrible on paper, I'm talking like 10 CD4s, single digit percentage and a VL that could not be measured.  Yet here I am, which is due to luck, wonderful family and friends, incredible treatments and the understanding that I am not going to die today, tomorrow, nor the next day... at least not from HIV.

I urge you to do something, everyday, that you absolutely love.  Even if it's just for fifteen minutes, you must take time for yourself.  Try to live a relatively healthy lifestyle and don't forget to feed your mind as well as your spirit.  It also helps to remember that there are simply some things in life we have no control over and worrying about such things merely drains your soul.

I can't promise that life with HIV will be easy, but it doesn't have to be half as hard as you may think.  There's nothing wrong with the occasional fear about events in life, just be careful, to not let your fear, stop you from reaching for your dreams.

Always remember, you have HIV, HIV does not have you.

Joe

Offline skycee

  • Member
  • Posts: 72
  • oh you are having a bad day? Did you die?
Re: A roller coaster ride.....
« Reply #9 on: January 01, 2013, 05:38:07 AM »
Thank you Joe for relating with our fears....and cojo feels just what I feel....

I am learning to live one day at a time, spend time with friends (though I feel selfish at times cod they don't know my status and I'm just feeding off their positive energy and vibe), feed myself positive thoughts no matter how hard it can be, eat healthy, get enough rest.....and still think of where I did be 5yrs-20yrs from now....yes I still believe I can be an airline pilot even with this cross I bare.

It will take awhile, buh i know I will get there, I will get to the point where I don't have to worry about every pain I feel as an indication that something is going wrong inside of me (just like the throbbing slight pain I feel just below my right rib cage and yeah its getting me worried). Buh all in all.....i will live and I will live healthy.

Thanks once again
Infected September's 2012
Seroconverted October 2012
Elisa test- indeterminate 20th November. 2012
Rapid test - Negative 23th November 2012
Elisa test - Positive 10th December 2012
CD4 - 546, 12th Dec 2012
CD4 600+, VL 6702 26th March 2013

Offline Cojo

  • Member
  • Posts: 198
Re: A roller coaster ride.....
« Reply #10 on: January 11, 2013, 12:31:51 PM »
One of the gifts that HIV has brought me (yes, a gift) is the opportunity to have my faith restored that there are very generous, brave and compassionate people out there. Think of it, this forum is a collective of strangers on a journey with an evident common point, but outside of that, it is an act of sisters and brothers showing compassion, care and generosity.

In my first few months, this forum was literally my lifeline. I would log on many times a day and the reassurances woven through the stories that HIV is manageable, and it does get better with time were the very words I needed to make it through some days. What I most honour about he posts, is they are based on deep knowledge, lived experience and mere survival!

Joe and Mike (leatherman) are among the many who always find the time to offer an informed, encouraging word. Someday, it would be a n honour to meet them.

I'm a year and a half into this now and I find myself in a strange place emotionally. As the OP called it, it really is a roller coaster ride. The ride gets wilder the closer I get to labs.

I think that my mindscape flip flops between the polarities of " this is a chronic manageable condition with a full life expectancy and little illness" to pure panic that somehow all will come crashing down due to resistance, side effects or my chronically low CD4 numbers. Maybe at the time, the pure survival instinct has shut down and I'm move analytic. If I was comparing to the Kubler-Ross model, I'd say my prominent emotions are anger, denial and despair. Maybe 2013 will be the year to get the glimpse of acceptance!

I have made it a goal to find a poz mentor beyond these forums to COMPLIMENT my experience. If my local ASO is correct, there are about 76,000 of us pozzies in Toronto so surely I can find one!

Best.
May 2011 - Tested Positive
June 2011 - CD4 330   16%   VL182,000 no resistance
Oct 6, 2011 - CD4 300  20%  VL 60,000
Oct 7, 2011 - start Truvada / Isentress
Nov 29, 2011 CD4 280 26% VL 54
Feb 7 2012 CD4 260 25% UD!
Mar 20 2012 CD4 400 28%
June 2012 CD4 330 26% UD
Sept 2012 CD4 450 32% UD
Dec 2012 CD4 310 28% UD
May 2013 CD4 500 32% UD
Oct 2013 CD4 460 33% UD
May 2014 CD4 360 33% UD
Aug 2014 swap out Isentress for Tivicay
Oct 2014 CD4 320 33% UD

 


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