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Author Topic: HIV today.  (Read 5817 times)

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Offline Live040314

  • Member
  • Posts: 40
HIV today.
« on: May 04, 2016, 03:32:06 pm »
Hello everyone,

It's been some time since I've stopped by and checked things out but things are going quite well... Which is actually what I'm here to talk about.

Does anyone else have the following thoughts?

I feel lucky. But mostly, I don't feel at all. Over the past year HIV has become such a non-issue for me that I have begun to nearly forget that I even have it. I continue to read stories of long term survivors and what they have been through in their struggles with this virus but I feel like I am in a different boat, as wonderful and horrible as that sounds. I have no health related symptoms due to my HIV, I am dating in a healthy way, men are open to my status, my sex life does not suffer, I am employed full time and continue to remain financially and emotionally stable and personally independent. I take my one pill a day and carry on.

I often wonder if I am living in a different time. The stories and opinions I hear out there regarding HIV just don't seem to apply. I assume this is simply because of the effectiveness of the medications available today, the advent of PreP, and the word getting out about HIV. But I am still flaberghasted, two years ago I could not stop worrying about what was ahead of me, today the only thing that reminds me that I even have HIV is the 10 seconds everyday it takes me to put a pill in my mouth and swallow it. I hope this continues well into the rest of my very normal lifespan.

Anyone else feel like we are finally beating this virus? Thoughts of encouragement to anyone needing it.

Take care,
Aaron
4/3/14 Diagnosed
4/10/14 Initial Labs VL 12000, CD4 736 (30%)
4/27/14 Started Complera
6/10/14 VL 173, CD4 680 (34%)
7/31/14 VL <20, CD4 795 (34%)
10/31/14 VL <20, CD4 809 (32%)
3/9/15 VL <20, CD4 615 (38%)
4/23/15 VL <20, CD4 791 (39%)
9/16/15 VL <20, CD4 840 (34%)
4/18/16 VL <20, CD4 1062 (29%)
5/1/16 Started Odefsey

Offline CaveyUK

  • Global Moderator
  • Member
  • Posts: 1,642
Re: HIV today.
« Reply #1 on: May 04, 2016, 03:44:40 pm »
I think it shows how far treatment and understanding of this condition has come over the years.

I too feel lucky, but I feel stupendously grateful to the LTS'ers who came before me who did experience the sharp end of the epidemic (both in terms of treatment AND the devastation of communities prior to effective ART).

There are still millions of people though, who don't know they have it or have trouble getting access to the latest meds or have cultural issues with dealing with the virus. There are also many whom have serious psychological issues in dealing with it all, even with latest treatments.

So it is important to balance the gratefulness we have in having amazing treatment and being able to live a long and functioning life, with the need for continued investment, research and support in coming years.
HIV - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here:
PEP and PrEP

Offline Live040314

  • Member
  • Posts: 40
Re: HIV today.
« Reply #2 on: May 04, 2016, 03:54:25 pm »
I completely agree Cavey  :)
4/3/14 Diagnosed
4/10/14 Initial Labs VL 12000, CD4 736 (30%)
4/27/14 Started Complera
6/10/14 VL 173, CD4 680 (34%)
7/31/14 VL <20, CD4 795 (34%)
10/31/14 VL <20, CD4 809 (32%)
3/9/15 VL <20, CD4 615 (38%)
4/23/15 VL <20, CD4 791 (39%)
9/16/15 VL <20, CD4 840 (34%)
4/18/16 VL <20, CD4 1062 (29%)
5/1/16 Started Odefsey

Offline 9goug9goug

  • Member
  • Posts: 46
Re: HIV today.
« Reply #3 on: May 04, 2016, 05:22:04 pm »
80% of the time I agree completely with your original post. We should feel lucky that we have the treatment we do and I, like you, can go long periods of time just living my life and enjoying it without letting HIV get me down.

But to be honest, there is still that other 20% of the time, which is days when I just think too much or I worry about the future and compare myself to the spontaneous carefree people my age or get paranoid about my health. As said, I do still believe there are psychological factors, even when there isn't so many health ones.

But hopefully with more understanding of what an HIV diagnosis really means today, and hopefully less stigma, even this part of it will diminish. I agree completely we should feel lucky though.

Offline Hopeful2016

  • Member
  • Posts: 107
Re: HIV today.
« Reply #4 on: May 04, 2016, 07:34:55 pm »
Hello everyone,

It's been some time since I've stopped by and checked things out but things are going quite well... Which is actually what I'm here to talk about.

Does anyone else have the following thoughts?
Aaron
Is it so simple like u said?
I don't want to be pessimistic but what about longterm effects? Stigma?longterm resistance? Longterm side effects? What about the future? It's not a vitamin you take!!!
I like ur positive attitude toward the diagnosis but...
REALLY it's not so simple as u described
We will meet challenges... Of course we will!

Offline CaveyUK

  • Global Moderator
  • Member
  • Posts: 1,642
Re: HIV today.
« Reply #5 on: May 04, 2016, 07:43:54 pm »
Is it so simple like u said?
I don't want to be pessimistic but what about longterm effects? Stigma?longterm resistance? Longterm side effects? What about the future? It's not a vitamin you take!!!
I like ur positive attitude toward the diagnosis but...
REALLY it's not so simple as u described
We will meet challenges... Of course we will!

Everyone has challenges in life, with or without HIV

No-one is making light of some of the specific challenges relating to HIV (although I do wish you would stop talking about longterm resistance), but compared to how things used to be - there is no reason the outlook cannot be bright and people can live full, active lives.

As most people get older, they will find themselves on daily medication of one sort or another. HIV is just one more thing we need to treat to control.

HIV - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here:
PEP and PrEP

Offline Hopeful2016

  • Member
  • Posts: 107
Re: HIV today.
« Reply #6 on: May 04, 2016, 07:53:18 pm »
Everyone has challenges in life, with or without HIV

No-one is making light of some of the specific challenges relating to HIV (although I do wish you would stop talking about longterm resistance), but compared to how things used to be - there is no reason the outlook cannot be bright and people can live full, active lives.

As most people get older, they will find themselves on daily medication of one sort or another. HIV is just one more thing we need to treat to control.

I said I don't want to be pessimistic but it's not as simple as taking one pill aday!!!... It's a life changing event... That is my opinion and I'm free in my beliefs as u r free to believe that it's a vitamin!

Offline CaveyUK

  • Global Moderator
  • Member
  • Posts: 1,642
Re: HIV today.
« Reply #7 on: May 04, 2016, 08:03:06 pm »
I said I don't want to be pessimistic but it's not as simple as taking one pill aday!!!... It's a life changing event... That is my opinion and I'm free in my beliefs as u r free to believe that it's a vitamin!

When did I say it's a vitamin?

I think you are misinterpreting the message in this thread. No-one is saying that everyone is issue-free or that HIV is a walk in the park and without challenges. You clearly have issues with your status and everyone can absolutely empathise with that - it's not an easy thing for anyone to wrap their head around.

But it doesn't change the fact that many people will find themselves able to get on with their life and maintain a positive outlook on life, due to the advances in treatment which we are benefiting from now.
HIV - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here:
PEP and PrEP

Offline Tonny2

  • Member
  • Posts: 2,938
Re: HIV today.
« Reply #8 on: May 04, 2016, 08:37:32 pm »
Is it so simple like u said?
I don't want to be pessimistic but what about longterm effects? Stigma?longterm resistance? Longterm side effects? What about the future? It's not a vitamin you take!!!
I like ur positive attitude toward the diagnosis but...
REALLY it's not so simple as u described
We will meet challenges... Of course we will!

          ojo        Hello everybody....I understand all of your concerns, but, why instead of thinking negatively, you guys think about, maybe in a few years we will have a cure, or better treatments, there will not be side effects or resistance to the meds///I was diagnosed in 1994, getting a hiv dx was a death sentence, I asked my doctor how much longer I would live, he said two more years, yes, I felt terrible, I didn't eat well, I didn't want to get up from my bed for almost a week, but I said to mself, do I want to die or I want to fight, I decided to fight, I never care about side effects, life span, resistance, I said, I will fight this and if I get to get any other problems because of the side effects, I will deal when it gets to that point, it takes time to get used to our new normal, like the OP mentioned, but eventually, we learn to live with hiv, we have to make the best with what we have  now, let's worry about the future problems, if there were to be sany problems, do not worry untill you have something to worry about...I've been taking meds for 21 years, yes, I do have problems with side effects, they were toxic meds then, but, all of us, reaserchers, doctors, even we who are living with the virus, have learned from all those years, we have learned a lot, that you newbies are taking just one med a day, so, please, concentrate in living your lives one day at a time, enjoy everyday as it was the last day of your lives, and don't worry about what the future will bring you, side effects, resistance, etc, etc...remember, if you were to develop resistance, there are lots of combos you can still switch too, side effects, you will deal with them, as all LTS have been doing for so long, stigma, well, that's a though one, there has always been and always will be ignorance.

And yes, I also call my meds my vitamines, have done it for 21 years, they make me feel good, I'm grateful there are there for me to take them, and sometimes I think about people from poor countries, who still have to deal with those toxic meds we LTS used to take during the 80s and 90s, and I don't hear them complaining, I talked to several of them on the "Vivir con vih" forum, it's all they can get, and they are appreciative about it.

So, for all of you newly diagnosed members, it will rake time to get used to the fact our lives have changed, but, fortunally for all of you newbies, life looks better for you and it will be better than lives of the people before you guys, it is so much better, that nobody dies anymore from an hiv related infection, as long as you take your meds and if you want to keep living...life is good even living with HIV, just set your mind to it, be positive, now that you are positive..the sooner you start being positive about your new normal, the better and happier you would live...best of luck...hugs for everybody...cheer up!!!                                              ojo

Offline harleymc

  • Member
  • Posts: 1,524
Re: HIV today.
« Reply #9 on: May 05, 2016, 09:08:53 am »
Rock on Aaron!

Offline harleymc

  • Member
  • Posts: 1,524
Re: HIV today.
« Reply #10 on: May 05, 2016, 09:16:04 am »
I'm agreeing with tonny on this.

Of course there are challenges in life.

Challenges are what make life worth living!

Embrace life second by second and stop making up 'but what if the sky falls one day' stories. Just admire that sky and get on with creating a beautiful life with worthwhile achievements.

Offline metekrop

  • Member
  • Posts: 428
  • Is time running fast for you.
Re: HIV today.
« Reply #11 on: May 05, 2016, 09:17:43 am »
I completely agree with you, Live.  Like you said I never ever think I have that nasty virus in my blood for a second.  I put up my alarm on my cell phone and take one in twenty-four hours med just before I go to the bed consistently.  I am feeling like I am a normal person who is leading a family.  I have a beautiful wife and third grade son whom I believe is the reason why God make me feel very normal.  I am planning for my family’s future, retirement, health and wellbeing.   With the grace of God, I hope I will be living normal and leave for good when my time is up.
Diag.on 12/8, 2000, CD 440 VL 44K, No Meds
12/08 - 2/09 CD< 50 & VL >500k hosp'z.
St. Atripla - 7/09 CD 179, VL 197k
10/09 CD 300 VL U
3/10 468 U
8/10 460 U
12/10 492 U
3/11 636 U
8/11 530 U
1/12  616 U
7/12 640 U
12/12 669 U
5/13 711 U
11/13 663 U
4/14  797 U
10/14 810 U
4/15 671 U
10/15 694 U
3/16 768 U
8/16 459 U
2/22 780 U
8/31 940 U
2/26 809 U
8/18 882 U
3/28 718 U
8/15 778 U
2/25 920 70
8/11 793 U
2/22 690 U
6/8 834 U

Offline Reggie

  • Member
  • Posts: 109
Re: HIV today.
« Reply #12 on: May 05, 2016, 10:47:11 am »
Yeah after 2 and a half years since finding out my positive status-dealing with very bad side effects-changing meds still dealing with stigma and relationship issues, funny as it may sound in a way its a blessing---saying that I would still like to have never contacted this virus and like to be hiv positive but,,
when I was really hitting rock bottom it made me think about life, myself, what was and is important.I found through the help I recieved from others and the help I can give  to others in whatever way just how good that feels.
I believe I have become a better person from whats happened to me and the people I've met.Everybody is dealing with some sorta shit/battle in their lives-you, me the stranger you meet on the street....And we will know nothing about people we don't know.
For me makes me think be nice, try to put a smile on peoples faces.Making someone else feel good helps your own being,,,,no ones perfect , live and learn so to speak.
These forums where meet people from all forms of life have been a real blessing.It also shows HIV certainly doesnt descriminate when infecting people.
God Bless
Reg

Offline Reggie

  • Member
  • Posts: 109
Re: HIV today.
« Reply #13 on: May 05, 2016, 10:49:49 am »
I meant "still prefer to be HIV negative" ....lol...not positive.....but not to be!!

Offline Live040314

  • Member
  • Posts: 40
Re: HIV today.
« Reply #14 on: May 05, 2016, 11:44:22 pm »
I'd like to take a minute to post something I put out publicly on Facebook a year after my diagnosis. Maybe this will help some of you shed some of the stigma you feel and help you on your journey, Perhaps not. I know it helped me immensely to be able to share my story and my life with others and I am still very open to this day. HIV is not a death sentence, there are positives also.

-Posted April 3rd 10:09am, 2015 on my Facebook profile.-

"Hello Facebook world,
I have heard said before that Facebook is not the place for serious conversation or the place to share the intricate details of ones life. Today I am bucking that philosophy and humanizing this social media platform for a while if I may. (No Hillary Clinton posts or "25 things every man should know to please his woman"...I want to share a story with you about my life.

1 year ago today at this very moment (10:09am) I received a phone call at work, I answered the call like any other call with my typical "Hello", a slight inflection as to not sound like a grump... (Doesn't fool many people I'm sure). It was my doctor at the Mayo clinic here in Mankato. A couple days prior I had gone in for a routine STD screening, my stomach had immediately filled with nervousness and anxiety at the sound of my doctors voice. I don't think I spoke, I can't really remember. He went on telling me that all of my tests looked good etc etc and then he paused, he said the intitial results of my HIV screening had also come in and he stopped talking... I'm not sure why. It was as if he were giving me a moment to sit down or breathe or take in the sight of the world as I had come to know it, it was quiet. I let out a very froggy and chest filled "okay...", he continued "you tested positive for HIV, we would like you to come into the office if you could, just come in the desk is expecting you." I was shocked and I didn't quite know how to respond... I'm not actually even sure if I did. Whoops... My bad, sorry doc. There it was, a moment in time that everything stops and life and reality slap us in the face and waves it's pretentious finger at us and says ... Uh uh not so fast.

I left work soon there after, tears welling up in my eyes, my hands were shaking, and I honestly don't think I knew where I was or where I was going, I just left.

HIV is scary, it's heartless and it's filled with uncertainty. It is a journey that cuts to the soul of who I am as human being. The ups and downs that come with financial worries (HIV meds are very expensive), the emotional toll it takes on ones sense of self worth, the anticipation over a simple blood draw to see how the immune system looks today, the absolute terror of dating and just the everyday anxiety that one experiences with human interactions. It's real. There is a very important reason I am bringing this to your attention, though I may not have known where I was going a year ago when I got in my car, I know where I am today. More importantly, I know WHO I am today. Yes HIV impacts those that have it, but I am here to tell you something else... I am alive, I am healthy, and I am living my life. I have a unique opportunity to show the world and you all that this disease has a face, and that you need not fear it nor those that have it. The Unmedicated virus attacks the hosts immune system by attaching itself to CD4 cells (those are your fighters in simple terms), during this time the virus also replicates. A single HIV cell can replicate itself 10,000 times in a single day. After it attaches itself and replicates, it kills the CD4 cell. Over time this depletion of CD4 cells makes your immune system incapable of fighting off the simplest of infections and this condition is known as AIDS. The virus can get to a point where it is fatal and the host generally succumbs to an opportunistic infection of some kind or another - HIV or AIDS do not themselves cause death. This story about the life cycle of HIV is not the only option, modern day advances in science have brought about medications that stop the replication of HIV and allow ones immune system to fight the virus itself instead of being overwhelmed like previously stated. After time the virus senses it's demise and goes into hiding, this is where the term HIV Undetectable comes from. Simply put, with these new little HIV fighting troopers floating around in your blood the virus is not measurable in a sample of your blood or "undetected" it is still there, it is just not active, it's hiding like the coward it is. When a person is on medication and undetectable the odds of transmission of the virus are extremely small, almost non existent. How small? That is generally the next question asked - well, put in laymans terms, you have a higher probability of dying in a plane crash or winning the lottery. Sooo, moral of the story... Take your meds, live your life - move forward. That is where I am at personally.

Now for the real reason behind this post, it is not about me and was never intended to be. This post is for anyone reading this that has to go through what I've been through in the last year, you are not alone. You are still you, and you will be okay. This post is also for all of you reading it that ever receive the pure and heartfelt trust of being told by someone that they are positive. I hope that you can draw off this information and find a place of love and support for that individual that is scared to death of what they are facing. It is not easy to tell people that you have HIV. Our society has created a stigma towards this virus that causes rejection and fear toward the individuals affected by it at nearly every turn in their lives. They are not dirty, they did not want this and they did nothing wrong to get it and they ARE NOT going to give it to you. They are simply a victim of a virus that does not discriminate. They are the same son, daughter, mother, father, friend that they were before and they need you as much as you need them to be okay.

I am lucky, I get to live my life through the lens of someone facing a human condition that most do not understand. I get to share and learn and live with HIV. I get to see people for who they are and how they see me. I cannot tell you in ten years if asked whether I would choose to be negative if I would say yes. I have an outlook on life now that cannot be obtained without this journey and for that I am grateful. Thanks for listening, be kind to one another! Love ya."
4/3/14 Diagnosed
4/10/14 Initial Labs VL 12000, CD4 736 (30%)
4/27/14 Started Complera
6/10/14 VL 173, CD4 680 (34%)
7/31/14 VL <20, CD4 795 (34%)
10/31/14 VL <20, CD4 809 (32%)
3/9/15 VL <20, CD4 615 (38%)
4/23/15 VL <20, CD4 791 (39%)
9/16/15 VL <20, CD4 840 (34%)
4/18/16 VL <20, CD4 1062 (29%)
5/1/16 Started Odefsey

Offline hiv_rizzy

  • Member
  • Posts: 139
  • Male. 28. Positive
Re: HIV today.
« Reply #15 on: May 06, 2016, 05:00:08 pm »
I'd like to take a minute to post something I put out publicly on Facebook a year after my diagnosis. Maybe this will help some of you shed some of the stigma you feel and help you on your journey, Perhaps not. I know it helped me immensely to be able to share my story and my life with others and I am still very open to this day. HIV is not a death sentence, there are positives also.

-Posted April 3rd 10:09am, 2015 on my Facebook profile.-

"Hello Facebook world,
I have heard said before that Facebook is not the place for serious conversation or the place to share the intricate details of ones life. Today I am bucking that philosophy and humanizing this social media platform for a while if I may. (No Hillary Clinton posts or "25 things every man should know to please his woman"...I want to share a story with you about my life.

1 year ago today at this very moment (10:09am) I received a phone call at work, I answered the call like any other call with my typical "Hello", a slight inflection as to not sound like a grump... (Doesn't fool many people I'm sure). It was my doctor at the Mayo clinic here in Mankato. A couple days prior I had gone in for a routine STD screening, my stomach had immediately filled with nervousness and anxiety at the sound of my doctors voice. I don't think I spoke, I can't really remember. He went on telling me that all of my tests looked good etc etc and then he paused, he said the intitial results of my HIV screening had also come in and he stopped talking... I'm not sure why. It was as if he were giving me a moment to sit down or breathe or take in the sight of the world as I had come to know it, it was quiet. I let out a very froggy and chest filled "okay...", he continued "you tested positive for HIV, we would like you to come into the office if you could, just come in the desk is expecting you." I was shocked and I didn't quite know how to respond... I'm not actually even sure if I did. Whoops... My bad, sorry doc. There it was, a moment in time that everything stops and life and reality slap us in the face and waves it's pretentious finger at us and says ... Uh uh not so fast.

I left work soon there after, tears welling up in my eyes, my hands were shaking, and I honestly don't think I knew where I was or where I was going, I just left.

HIV is scary, it's heartless and it's filled with uncertainty. It is a journey that cuts to the soul of who I am as human being. The ups and downs that come with financial worries (HIV meds are very expensive), the emotional toll it takes on ones sense of self worth, the anticipation over a simple blood draw to see how the immune system looks today, the absolute terror of dating and just the everyday anxiety that one experiences with human interactions. It's real. There is a very important reason I am bringing this to your attention, though I may not have known where I was going a year ago when I got in my car, I know where I am today. More importantly, I know WHO I am today. Yes HIV impacts those that have it, but I am here to tell you something else... I am alive, I am healthy, and I am living my life. I have a unique opportunity to show the world and you all that this disease has a face, and that you need not fear it nor those that have it. The Unmedicated virus attacks the hosts immune system by attaching itself to CD4 cells (those are your fighters in simple terms), during this time the virus also replicates. A single HIV cell can replicate itself 10,000 times in a single day. After it attaches itself and replicates, it kills the CD4 cell. Over time this depletion of CD4 cells makes your immune system incapable of fighting off the simplest of infections and this condition is known as AIDS. The virus can get to a point where it is fatal and the host generally succumbs to an opportunistic infection of some kind or another - HIV or AIDS do not themselves cause death. This story about the life cycle of HIV is not the only option, modern day advances in science have brought about medications that stop the replication of HIV and allow ones immune system to fight the virus itself instead of being overwhelmed like previously stated. After time the virus senses it's demise and goes into hiding, this is where the term HIV Undetectable comes from. Simply put, with these new little HIV fighting troopers floating around in your blood the virus is not measurable in a sample of your blood or "undetected" it is still there, it is just not active, it's hiding like the coward it is. When a person is on medication and undetectable the odds of transmission of the virus are extremely small, almost non existent. How small? That is generally the next question asked - well, put in laymans terms, you have a higher probability of dying in a plane crash or winning the lottery. Sooo, moral of the story... Take your meds, live your life - move forward. That is where I am at personally.

Now for the real reason behind this post, it is not about me and was never intended to be. This post is for anyone reading this that has to go through what I've been through in the last year, you are not alone. You are still you, and you will be okay. This post is also for all of you reading it that ever receive the pure and heartfelt trust of being told by someone that they are positive. I hope that you can draw off this information and find a place of love and support for that individual that is scared to death of what they are facing. It is not easy to tell people that you have HIV. Our society has created a stigma towards this virus that causes rejection and fear toward the individuals affected by it at nearly every turn in their lives. They are not dirty, they did not want this and they did nothing wrong to get it and they ARE NOT going to give it to you. They are simply a victim of a virus that does not discriminate. They are the same son, daughter, mother, father, friend that they were before and they need you as much as you need them to be okay.

I am lucky, I get to live my life through the lens of someone facing a human condition that most do not understand. I get to share and learn and live with HIV. I get to see people for who they are and how they see me. I cannot tell you in ten years if asked whether I would choose to be negative if I would say yes. I have an outlook on life now that cannot be obtained without this journey and for that I am grateful. Thanks for listening, be kind to one another! Love ya."

Truly positive!!! Im so happy hiv treatment is so advanced nowadays
Discovery! April 26, 2016
- Positive test confirmed by blood test
2016
-Viral load and CD4 unknown
-May 31st update - big delay at gov hosp lab
#July 9th late Results: CD4 16/ VL 13, 027
*Prescribed Atripla combo with Bactrim
#September CD4 97 / VL UD
2017
February CD4 137 / VL UD

Offline Matland

  • Member
  • Posts: 74
Re: HIV today.
« Reply #16 on: May 07, 2016, 03:37:46 am »
I'd like to take a minute to post something I put out publicly on Facebook a year after my diagnosis. Maybe this will help some of you shed some of the stigma you feel and help you on your journey, Perhaps not. I know it helped me immensely to be able to share my story and my life with others and I am still very open to this day. HIV is not a death sentence, there are positives also.

-Posted April 3rd 10:09am, 2015 on my Facebook profile.-

"Hello Facebook world,
I have heard said before that Facebook is not the place for serious conversation or the place to share the intricate details of ones life. Today I am bucking that philosophy and humanizing this social media platform for a while if I may. (No Hillary Clinton posts or "25 things every man should know to please his woman"...I want to share a story with you about my life.

1 year ago today at this very moment (10:09am) I received a phone call at work, I answered the call like any other call with my typical "Hello", a slight inflection as to not sound like a grump... (Doesn't fool many people I'm sure). It was my doctor at the Mayo clinic here in Mankato. A couple days prior I had gone in for a routine STD screening, my stomach had immediately filled with nervousness and anxiety at the sound of my doctors voice. I don't think I spoke, I can't really remember. He went on telling me that all of my tests looked good etc etc and then he paused, he said the intitial results of my HIV screening had also come in and he stopped talking... I'm not sure why. It was as if he were giving me a moment to sit down or breathe or take in the sight of the world as I had come to know it, it was quiet. I let out a very froggy and chest filled "okay...", he continued "you tested positive for HIV, we would like you to come into the office if you could, just come in the desk is expecting you." I was shocked and I didn't quite know how to respond... I'm not actually even sure if I did. Whoops... My bad, sorry doc. There it was, a moment in time that everything stops and life and reality slap us in the face and waves it's pretentious finger at us and says ... Uh uh not so fast.

I left work soon there after, tears welling up in my eyes, my hands were shaking, and I honestly don't think I knew where I was or where I was going, I just left.

HIV is scary, it's heartless and it's filled with uncertainty. It is a journey that cuts to the soul of who I am as human being. The ups and downs that come with financial worries (HIV meds are very expensive), the emotional toll it takes on ones sense of self worth, the anticipation over a simple blood draw to see how the immune system looks today, the absolute terror of dating and just the everyday anxiety that one experiences with human interactions. It's real. There is a very important reason I am bringing this to your attention, though I may not have known where I was going a year ago when I got in my car, I know where I am today. More importantly, I know WHO I am today. Yes HIV impacts those that have it, but I am here to tell you something else... I am alive, I am healthy, and I am living my life. I have a unique opportunity to show the world and you all that this disease has a face, and that you need not fear it nor those that have it. The Unmedicated virus attacks the hosts immune system by attaching itself to CD4 cells (those are your fighters in simple terms), during this time the virus also replicates. A single HIV cell can replicate itself 10,000 times in a single day. After it attaches itself and replicates, it kills the CD4 cell. Over time this depletion of CD4 cells makes your immune system incapable of fighting off the simplest of infections and this condition is known as AIDS. The virus can get to a point where it is fatal and the host generally succumbs to an opportunistic infection of some kind or another - HIV or AIDS do not themselves cause death. This story about the life cycle of HIV is not the only option, modern day advances in science have brought about medications that stop the replication of HIV and allow ones immune system to fight the virus itself instead of being overwhelmed like previously stated. After time the virus senses it's demise and goes into hiding, this is where the term HIV Undetectable comes from. Simply put, with these new little HIV fighting troopers floating around in your blood the virus is not measurable in a sample of your blood or "undetected" it is still there, it is just not active, it's hiding like the coward it is. When a person is on medication and undetectable the odds of transmission of the virus are extremely small, almost non existent. How small? That is generally the next question asked - well, put in laymans terms, you have a higher probability of dying in a plane crash or winning the lottery. Sooo, moral of the story... Take your meds, live your life - move forward. That is where I am at personally.

Now for the real reason behind this post, it is not about me and was never intended to be. This post is for anyone reading this that has to go through what I've been through in the last year, you are not alone. You are still you, and you will be okay. This post is also for all of you reading it that ever receive the pure and heartfelt trust of being told by someone that they are positive. I hope that you can draw off this information and find a place of love and support for that individual that is scared to death of what they are facing. It is not easy to tell people that you have HIV. Our society has created a stigma towards this virus that causes rejection and fear toward the individuals affected by it at nearly every turn in their lives. They are not dirty, they did not want this and they did nothing wrong to get it and they ARE NOT going to give it to you. They are simply a victim of a virus that does not discriminate. They are the same son, daughter, mother, father, friend that they were before and they need you as much as you need them to be okay.

I am lucky, I get to live my life through the lens of someone facing a human condition that most do not understand. I get to share and learn and live with HIV. I get to see people for who they are and how they see me. I cannot tell you in ten years if asked whether I would choose to be negative if I would say yes. I have an outlook on life now that cannot be obtained without this journey and for that I am grateful. Thanks for listening, be kind to one another! Love ya."

Thank you so much for this post. It encourages me to hold for the life. I have been Diagnosed Just 20 days ago :(

Offline Live040314

  • Member
  • Posts: 40
Re: HIV today.
« Reply #17 on: May 07, 2016, 11:07:58 am »
Matland and Rizzy,

You are going to be okay. I'm sorry that you were diagnosed but please know that it is most likely not going to be what you think it is at this moment. Be strong! You'll get through it! Chin up.

You have immense value and always will.

Aaron
4/3/14 Diagnosed
4/10/14 Initial Labs VL 12000, CD4 736 (30%)
4/27/14 Started Complera
6/10/14 VL 173, CD4 680 (34%)
7/31/14 VL <20, CD4 795 (34%)
10/31/14 VL <20, CD4 809 (32%)
3/9/15 VL <20, CD4 615 (38%)
4/23/15 VL <20, CD4 791 (39%)
9/16/15 VL <20, CD4 840 (34%)
4/18/16 VL <20, CD4 1062 (29%)
5/1/16 Started Odefsey

Offline hiv_rizzy

  • Member
  • Posts: 139
  • Male. 28. Positive
Re: HIV today.
« Reply #18 on: May 08, 2016, 12:10:25 am »
Matland and Rizzy,

You are going to be okay. I'm sorry that you were diagnosed but please know that it is most likely not going to be what you think it is at this moment. Be strong! You'll get through it! Chin up.

You have immense value and always will.

Aaron

Thanks much. We all want to survive as we 'normally would' without hiv. I think it's highly possible with these current meds and even going further it will only get even better. Let's live with hope
Discovery! April 26, 2016
- Positive test confirmed by blood test
2016
-Viral load and CD4 unknown
-May 31st update - big delay at gov hosp lab
#July 9th late Results: CD4 16/ VL 13, 027
*Prescribed Atripla combo with Bactrim
#September CD4 97 / VL UD
2017
February CD4 137 / VL UD

Offline Matland

  • Member
  • Posts: 74
Re: HIV today.
« Reply #19 on: May 08, 2016, 03:08:31 am »
Thanks much. We all want to survive as we 'normally would' without hiv. I think it's highly possible with these current meds and even going further it will only get even better. Let's live with hope

Completely agree with you. I am dealing with psychological problems now. I say to myself i am possible candidate of any other illness. I Will be aged Quicker than negative people. My cancer is risk is higher and My mental capabilities are low compared to others :(

Offline CaveyUK

  • Global Moderator
  • Member
  • Posts: 1,642
Re: HIV today.
« Reply #20 on: May 08, 2016, 06:54:35 am »
Completely agree with you. I am dealing with psychological problems now. I say to myself i am possible candidate of any other illness. I Will be aged Quicker than negative people. My cancer is risk is higher and My mental capabilities are low compared to others :(

I think the psychological issues with HIV are bigger than the physical ones these days.

On your other points, the 'aging' thing with HIV doesn't mean you will look older quicker, but just that certain conditions that are related to aging *may* manifest a little sooner...such as bone issues, heart problems etc. The counter to that is that you will be having regular monitoring from your clinical team and will have a doctor to discuss any concerns with. I don't know about you but for me, if I were negative I probably wouldn't 'bother' the doctor until a problem is unassailable, so the chances are now that you will get treatment for any future problems sooner than you would do normally and this should help cancel out things.

Cancer risks? Sure. But if you look at any specific cancer, the % increase in risk from being HIV is only raising an already small % risk, so the overall risk - whilst higher - is still very very low. It's worth remembering that.

Mental capabilities? I can't speak for your overall IQ, but HIV shouldn't in itself make you any less capable than the next person. There are numerous studies into long term neurological issues but these also factor in people who have had the virus - and the earlier more potent medication, so it is hard to see an exact picture of how big these risks are for someone newly diagnosed in 2016. A lot of focus is on mental issues in later life, which is a side-effect of people with HIV now living long lives compared to the situation 30 years ago. Certainly not something to unduly worry yourself about.

It's also worth reminding yourself, as I have to do with myself also, that HIV- people will get illnesses (some unusual), cancer and experience neurological complaints. People also die in accidents, drug overdoses or simply genetic faults every day. Having HIV does increase the risks of some things, but having other conditions (diabetes, vascular problems, autoimmune conditions etc) also raise risks. It is not solely an HIV thing....it's just that we can't always be as open as others about things, which brings us back to HIV being more a psychological issue these days.
HIV - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here:
PEP and PrEP

Offline metekrop

  • Member
  • Posts: 428
  • Is time running fast for you.
Re: HIV today.
« Reply #21 on: May 09, 2016, 02:40:14 pm »
I meant "still prefer to be HIV negative" ....lol...not positive.....but not to be!!

That is true, friend.  The fact that I am living in Positivity make me more discipline, self-controlled and healthy man that would otherwise be dying of something else pretty soon.  And for me it is a blessing in disguise.  How about yours?  :P
« Last Edit: May 09, 2016, 02:47:04 pm by metekrop »
Diag.on 12/8, 2000, CD 440 VL 44K, No Meds
12/08 - 2/09 CD< 50 & VL >500k hosp'z.
St. Atripla - 7/09 CD 179, VL 197k
10/09 CD 300 VL U
3/10 468 U
8/10 460 U
12/10 492 U
3/11 636 U
8/11 530 U
1/12  616 U
7/12 640 U
12/12 669 U
5/13 711 U
11/13 663 U
4/14  797 U
10/14 810 U
4/15 671 U
10/15 694 U
3/16 768 U
8/16 459 U
2/22 780 U
8/31 940 U
2/26 809 U
8/18 882 U
3/28 718 U
8/15 778 U
2/25 920 70
8/11 793 U
2/22 690 U
6/8 834 U

Offline Live040314

  • Member
  • Posts: 40
Re: HIV today.
« Reply #22 on: May 10, 2016, 12:51:15 am »
That is true, friend.  The fact that I am living in Positivity make me more discipline, self-controlled and healthy man that would otherwise be dying of something else pretty soon.  And for me it is a blessing in disguise.  How about yours?  :P

I completely and unequivocally agree with this. 😊 Heads up!
4/3/14 Diagnosed
4/10/14 Initial Labs VL 12000, CD4 736 (30%)
4/27/14 Started Complera
6/10/14 VL 173, CD4 680 (34%)
7/31/14 VL <20, CD4 795 (34%)
10/31/14 VL <20, CD4 809 (32%)
3/9/15 VL <20, CD4 615 (38%)
4/23/15 VL <20, CD4 791 (39%)
9/16/15 VL <20, CD4 840 (34%)
4/18/16 VL <20, CD4 1062 (29%)
5/1/16 Started Odefsey

Offline xunil

  • Member
  • Posts: 98
Re: HIV today.
« Reply #23 on: May 15, 2016, 05:02:17 am »
I found out I was positive just over a year ago.  The more time goes on the less it affects me in a negative way.  I still think about it often, but more so in a general way and thinking about long-term health.  For most people it's very manageable and life goes on.  I'm sure that overall mindset and quality of your life in the present dictate how you feel about it.
Diagnosed April 2015
First labs and specialist visit April 2015
Initial appt and labs: CD4 560 and VL 18,000
Started Triumeq June 2015
VL UD after 30 days on Triumeq, CD4 slowly rising.

 


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