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Author Topic: One week on.....  (Read 4134 times)

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Offline Asklepios

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  • "I have always believed in a dancing god"
One week on.....
« on: September 25, 2011, 04:41:07 AM »
So ok....
9 days ago 4 little words changed my life....."They came back positive"
I just stared at my Dr. not really knowing what to say or do. I just stared....holding back tears despite feeling my eyes welling up.

I'm 27 years old. I'm in my penultimate year at law school. I hold down 2 jobs (1 that is extremely physical and that I absolutely LOVE). I constantly feel like I am walking a tight rope while juggling objects in the air. I didn't need nor did I want something else to juggle, something else that might throw my balance out....but yet its here, and its here to stay....

9 days in and I am still not sure how I feel about my current predicament. My doctor is great. She has been treating men with HIV for the past 20 years and so she is so acutely aware of everything that is currently going on - not only in my head, in my body, and importantly in the developments of HIV treatment and (hopefully) a cure (soon).

I rationally know that this is not a death sentence. I will continue to live a healthy and hopefully a long life (that is if I dont get hit by a bus - which technically speaking, are higher odds when compared to actually dying of this virus).

My life as such, within the past 9 days hasn't dramatically changed either. I  just take additional pills along with myriad of vitamins that i already took (though I am feeling more run down, but I am assured that this will pass once the treatment starts to attack the high amount of virus after initial diagnosis). I rationally know all this.

Unfortunately I am not purely a rational being, and emotionally I can't help but wonder how this will effect my ability to form meaningful relationships with other men, and other people. I can't help but wonder what form my life would have taken without this virus, and how my life will proceed with it. How it will impede my plans to travel, to see the world, to give myself fully to someone...eventually.

The issue of disclosure is constantly now revolving in my head, and I feel like I am betraying some of my closest friends (not to mention members of my own family) whom I haven't told despite there being no impetus to do so.

This has also forced me to take a deep look at myself, and confront some of my own prejudices which i have held about the virus and those that have it.

I believe the technical term for what is going on in my head is a  - 'mind fuck.'

I have to take everyday as they come. Some are bad. Some are good. But I guess they always were. Now, I just have an additional thread that I have to worry about in the tapestry of my life.

I think I'll be ok....but then again today was a good day.

Peace
Everything you are against can be restated in a way that puts you in support of something. Instead of being against war, be for peace; instead of being against poverty; be for prosperity.

Offline mecch

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  • red pill? or blue pill?
Re: One week on.....
« Reply #1 on: September 25, 2011, 07:20:38 AM »
Welcome.
Yep it can be a mind fuck.
Care to clarify what "pills" you are now taking?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Asklepios

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  • "I have always believed in a dancing god"
Re: One week on.....
« Reply #2 on: September 25, 2011, 07:24:49 AM »
Certainly Mecch -

I am taking 1 blue pill (Truvada - Tenofovir)
and I take 2 pinks pills a day (Isentress - Raltegravir)
Everything you are against can be restated in a way that puts you in support of something. Instead of being against war, be for peace; instead of being against poverty; be for prosperity.

Offline mecch

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  • red pill? or blue pill?
Re: One week on.....
« Reply #3 on: September 25, 2011, 07:35:20 AM »
Well its definitely a mind fuck, getting a diagnosis and also going on HAART all at the same time.

I think you'll find it all shakes out eventually and maybe reading and participating around this forum can help you reset to the new normal soon enough.

2 jobs and law school, pretty crazy! Bravo.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Assurbanipal

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Re: One week on.....
« Reply #4 on: September 25, 2011, 09:47:40 AM »
Welcome to the forums, Asklepios

Your post is very composed; you seem to have a good grasp of the potential for life and health.  That is not to deny the emotional turmoil that comes with a new diagnosis and which you feel.  But it suggests that you are likely to be able to make the small daily compromises necessary for treatment so that you will attain that potential. 

You are going to be fine.

There is fellowship on the forums.  But, for those who are readers, there is also a distillation of knowledge in the lessons
 http://www.aidsmeds.com/articles/Introduction_4702.shtml 
including a discussion about disclosing
http://www.aidsmeds.com/articles/Disclosure_7568.shtml

Be well
Assurbanipal

P.S. Hail, son of Apollo -- the ancient world greets you  ;)
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline spacebarsux

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Re: One week on.....
« Reply #5 on: September 25, 2011, 12:29:35 PM »
Hi Asklepios,

I'm sorry to hear about your diagnosis but welcome to the forums. You've got a good head on your shoulders and that's already a good indication that you're going to handle things well.

Some days can be hard, especially emotionally- but try not to let the setbacks get you down for too long.

I am 28 and was diagnosed January this year and can completely understand the 'mind fuck' you're experiencing. Mine was way fucked than yours lol.

Hugs  :)
« Last Edit: September 25, 2011, 01:37:41 PM by spacebarsux »
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline marriedmansam

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  • Posts: 45
Re: One week on.....
« Reply #6 on: September 25, 2011, 01:10:03 PM »
Hey there mister...


welcome to the forums. They really helped me through the first weeks....

I totally understand all of your thoughts about the future...i am still thinking similar things...

But hang on in there and soon the mind fucks will lesson...or so i am hoping!


sam
June/July 2011- Infected
30 Aug 2011    - First test
31 Aug 2011     - Call to tell me first test was poz

3 Sept 2011       - Joined this forum
5 Sept 2011       - clinic appointment for retest
16 Sept 2011     VL 75 400 CD4 428 and 28%
next appointment  3 Jan 2012
3 Jan 2012          - VL 71 300 CD4 460 and 23%

Offline phildinftlaudy

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  • sweet Ann what you think babe...
Re: One week on.....
« Reply #7 on: September 25, 2011, 01:12:39 PM »
Welcome Asklepios -
Glad you found the Forums and that you shared your story.

While this virus can definitely throw a curve ball into life - with the right attitude and adjustments, even this curve ball can be "hit out of the park."

Sounds like you have a positive (no pun intended) attitude.

HIV doesn't have to impact on your ability to accomplish your goals.  In fact, with the right attitude and proper monitoring and treatment, having HIV can actually expand, enhance, or better define your goals.

As with any "negative" situation we are presented with, we have the ability to look for the "silver lining" and try to make lemonade out of life's lemons.

I know that I have filled this welcome post with more than one cliche' - and it was purposeful - as cliches were born out of people's ability to overcome and to recognize that barriers are merely challenges on the obstacle course of life that can, if viewed in the right perspective, contribute in a meaningful way to our interactions with others and be used as the fuel that propels us towards the achievement of our goals and dreams.

Once again, welcome - look forward to hearing more from you.

-Phil
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline vaguesbleues

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  • Posts: 93
Re: One week on.....
« Reply #8 on: September 26, 2011, 12:28:41 AM »
WOW!  Diagnosed and starting medicine right away sounds like an awful lot to deal with.  Although, I agree with what some of the above posters have said.  You definitely seem to have a very good head on your shoulders and have put a great deal of thought into this situation.  If I might recommend something that helped me a ton when I found out this past April, I found discussion/support groups to be a huge support.   Being only 26, I had this impression that HIV really only affects "older" folks, but going to these groups helps me realize that I'm not the only one dealing with this. People still get infected every day, even those in their 20s.  Life will go on.

And, if I might, I remember struggling a lot with the idea of dating again.  How would HIV affect my ability to date?  Granted, I am in the San Francisco Bay Area, where many folks are greatly knowledgeable about the disease, but I just couldn't shrug the feeling of being "dirty" somehow.  But, about 2 months ago, I finally got up the courage to go on a date.  We were both just having a bit of wine, and it was apparent we were both quite into each other, but then he pulled back and I could tell something was wrong.  He just kinda stopped, and I asked what was up, and he said that he didn't want me to "freak out."  He right then and there told me he was HIV+, and I just smiled and told him I was too.  :)  Was by far the best reaction I had to telling someone.  While it didn't end up working out for other reasons, it helped me realize that while there will be some who will respond negatively, not everyone will.  You'll get there! 

Cheers!
03/10/2011 - Tested HIV negative
04/26/2011 - Inconclusive WB result
05/19/2011 - Confirmed HIV positive
                    VL < 50, T-Cell 747 (30%)
06/13/2011 - VL 345, T-Cell 841 (30%)
08/23/2011 - VL 50,100, T-Cell 1155 (19%) - CMV
09/18/2011 - Started Atripla!!
11/07/2011 - VL 489, T-Cell 881 (31%)
02/08/2012 - VL Undetectable!!, T-Cell 772 (34%)
08/08/2012 - VL UD, T-Cell 1070 (42%)
11/05/2012 - VL UD, T-Cell 1174 (35%)
03/18/2013 - VL UD, T-Cell 972 (28%)
10/04/2013 - VL UD, T-Cell 1025 (34%)

Offline Asklepios

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  • Posts: 7
  • "I have always believed in a dancing god"
Re: One week on.....
« Reply #9 on: September 26, 2011, 10:00:35 PM »
thank you all....

your words are kind and insightful, and I truly appreciate them. Today hasnt been such a good day (lack of motivation) so it was nice to be able to see the different bits of advise you all impart....

i dont feel so 'alone' anymore

Peace
Everything you are against can be restated in a way that puts you in support of something. Instead of being against war, be for peace; instead of being against poverty; be for prosperity.

Offline spacebarsux

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  • Survival of the Fittest
Re: One week on.....
« Reply #10 on: September 27, 2011, 03:45:40 AM »

The issue of disclosure is constantly now revolving in my head, and I feel like I am betraying some of my closest friends (not to mention members of my own family) whom I haven't told despite there being no impetus to do so.

Hey, just wanted to say that disclosure is obviously your personal decision and you'll know when the time is right. Just wanted to say that think about what YOU stand to benefit from disclosure to someone, at this point.

That said, in my experience keeping it a secret longer than necessary, especially from close family members felt like drowning in a whirlpool of my worst fears. Those who really know you and love you will stick by you HIV or not. Parents would be upset- but only intially.

Conversely, a lot of parents would be hurt that you chose to conceal such an important event in your life from them when all they really want is to see you happy and healthy. Once they see that nothing really has changed and you're obviously the same guy they'll appreciate you even more on how well you're handling things and getting on with your life.

Only you will know when the time is right for you.

Best
« Last Edit: September 27, 2011, 03:47:47 AM by spacebarsux »
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline Asklepios

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  • "I have always believed in a dancing god"
Re: One week on.....
« Reply #11 on: September 27, 2011, 07:59:04 AM »
Thanks for the sage advice once again Spacebarsux....

all the points you raise have been swirling in my head these past few days....

What comes next may sound like I am a total control freak (which isnt exactly too far from the truth) but I guess the whole can of worms that is released as a result of disclosing is what I fear most...

I mean I can deal with my 'stuff' revolving around the fact that I now have HIV (it is still so weird actually writing/saying that about myself), but it would be managing everyone elses 'stuff' which would do my head in. I know that it isnt my place to 'manage' how everyone else deals with this news...perhaps its also the narcissistic side of me which seeks to at least in some way control people's perceptions of me....

on one hand i could continue as before, since cosmetically nothing in my life has changed. Disclosing would potentially mean fundamentally 2 different responses from people :

1)  "how can I possibly be one of those people with HIV" - i.e. I dont look like someone who has HIV (I dont exactly know what a person with HIV is meant to look like, but you get where I am going with this)

or

2) "HIV can affect anyone" - perhaps by disclosing i can start to change people's perception of what the aforementioned 'person with HIV' is meant to look like when that person is standing right next to the person wondering what they would look like....

Family becomes more problematic. I have told my younger sister as I live with her and she was aware of my visits to my doctor. However the option of telling my parents is less realistic. I hear what you're saying - they'll be sad initially. But I know that my mother will worry incessantly. She worries now. I feel like I have already given her so much to worry about telling her that her first born son has HIV - would kill her.....

If anything this has giving me the impetus to be better than I am, and live my life fully, 100%. Not to cover up my illness but to demonstrate that I can still and will do anything.....

Clearly I have a lot to still sort out...apologies for my verboseness
Everything you are against can be restated in a way that puts you in support of something. Instead of being against war, be for peace; instead of being against poverty; be for prosperity.

Offline spacebarsux

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Re: One week on.....
« Reply #12 on: September 27, 2011, 12:47:59 PM »
Take your time mate. :)

In my experience, my pre-disclosure angst had more to do with my own prejudices and lopsided perceptions of people with HIV and I was projecting my biases on people close to me and how they would change their image of me. In a way I was selling myself short and was more than pleasantly surprised to see how supportive my family was.

Parents are usually stronger than we think and after the initial shock they usually come around. Almost always.

On the practical side, you obviously know that you're more than likely going to be alive and kicking for as long as any other 27 year old, so just don't make yourself a promise to live in secrecy for the rest of your life.

Oftentimes the burden of secrecy vastly outweighs any minor adverse affects that result from disclosure.

BUT there is NO rush right now, take your time.  

Best.
« Last Edit: September 27, 2011, 12:55:12 PM by spacebarsux »
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline Ann

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Re: One week on.....
« Reply #13 on: September 28, 2011, 06:11:22 AM »

telling her that her first born son has HIV - would kill her.....


Asklepios, welcome to the forums.

Don't underestimate a mother's capacity for dealing with her children's problems. Speaking as a mother myself, I'd want to know if something like this was going on in my daughter's life and I'd be hurt if she shut me out.

You don't have to rush to tell her, but I really think you should at some point. The chances are very good that it's going to come out at some point, so it would be better to be able to pick your time rather than have it be a big surprise, possibly at an inconvenient time.

What Space alluded to when he talked about his own perceptions colouring how people react - it's very true. The people I know who are deeply closeted and ashamed of their hiv status are the ones who tend to have more negative reactions when they do disclose. People pick up on subtle clues and will tend to mirror our own feelings about things like this.

I'm very comfortable with my status myself and I'm also very open about my status. I rarely have a bad reaction when disclosing.

It's a complicated issue for sure, but trust me when I say that the more comfortable you are with your hiv, the more comfortable others will be as well. If you're ashamed, people will pick up on that and assume you have reason to be ashamed and treat you accordingly.

It's just a virus and nothing to be ashamed about. Remember that.

Hang in there. It sounds like you already have a good handle on things and it will only get better. Keep your chin up!

Ann
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Asklepios

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  • "I have always believed in a dancing god"
Re: One week on.....
« Reply #14 on: September 28, 2011, 08:34:38 AM »
Hi there Ann!

thanks for your kind words of advice. Its good to hear a mother's point of view....my younger sister who is the only one in my family who knows (she's amazing) accuses me of being quite detached (which is true) and so I find it hard to understand what it would be like for a mother to deal with news that her son has HIV

You've hit the nail on 2 points:

1) that it will come out at some point and;
2) the more comfortable I am about my HIV, others will be too

On the first point - I want my mum to know. But being the control freak that I am, I would like to mitigate the worry that she will no doubt feel about the whole situation. For this i need to be armed with a lot of knowledge to demonstrate that it isnt a death sentence. Since I think the view my mum has about HIV is somewhat still coloured by the lived experience of HIV/AIDS from the late 80's early 90's. And considering that she is going to worry regardless (she's probably worrying right now about something...) I want to soften the blow I guess

I still have to work on the second point - because I'm struggling with the comfort piece. This means that I will have to work through some of my own preconceived notions about HIV, contracting HIV, and what it means for my life. Again its the divide between what I rationally know to be true, and the emotionally response i have about the whole situation. Adding the whole social stigma to that and it becomes a doosey....needless to say, i have a lot to learn, and a lot to work through.

thanks for the support

Peace
Everything you are against can be restated in a way that puts you in support of something. Instead of being against war, be for peace; instead of being against poverty; be for prosperity.

Offline Ann

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Re: One week on.....
« Reply #15 on: September 28, 2011, 10:27:41 AM »

I still have to work on the second point - because I'm struggling with the comfort piece.


I have confidence you'll get there. You're already headed in the right direction after a very short space of time since your diagnosis.

Hiv is an illness like any other. Would you hesitate to let your mum know you were diagnosed with diabetes or cancer? Don't underestimate her - and really, it's not your job to protect her. I can tell you that I'd definitely feel sad, hurt and disappointed if my daughter felt she could not share with me that she had hiv or any other serious condition. I'd feel like she thought she couldn't trust me, or thought I didn't love her enough. Or that she thought I'd be mad at her. Why would I be mad because my daughter had a health condition? It would hurt for sure.

But again, you don't have to tell her right away. Get your own head wrapped around it first. You'll get there.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline spacebarsux

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Re: One week on.....
« Reply #16 on: September 28, 2011, 12:32:31 PM »
For this i need to be armed with a lot of knowledge to demonstrate that it isnt a death sentence. Since I think the view my mum has about HIV is somewhat still coloured by the lived experience of HIV/AIDS from the late 80's early 90's. And considering that she is going to worry regardless (she's probably worrying right now about something...) I want to soften the blow I guess


Mate, in case you haven't already, have a look at these links:-

http://www.aidsmeds.com/articles/hiv_life_exectancy_survival_1667_14989.shtml

http://i-base.info/qa/543
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

 


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