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Author Topic: My Story, Thoughts, and Questions - 2 Weeks In  (Read 7117 times)

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Offline Jmarksto

  • Member
  • Posts: 483
My Story, Thoughts, and Questions - 2 Weeks In
« on: June 24, 2012, 08:28:25 PM »
Hi All;

I am a 51 y/o bi-m, tested positive June 11, confirmed by my doctor on the 15th, blood draws on Monday the 18th, and waiting for my appointment with my doc for my other numbers, etc.  I go in mid-July for that appointment due to a pre-planned trip that I can not change.

I have been scouring this site to read as much as I can, thanks to all who have posted.  I am writing in hopes it will help someone else, and I think it will help me process a bit.

The last two weeks have been a roller-coaster, the first day was a blur - I came home and told my significant other (F) of ten years and she has been so supportive and accepting.  She was tested on the 11th, too and was negative, and I pray that the follow up tests are too (huge worry).  I was in shock (and still am at times) the first two or three days, and cried for a few days after.  I have to admit that I was (am) ignorant of HIV and I think my biggest fear is that I really don't know what to expect or what will happen.  I also have to admit the shame I feel and the fear that I have in telling family/friends, and coworkers knowing.  We have had more family and guests the last few weeks than any time before, and work has been busy -- it has been an emotional and physical challenge keeping it together with others with this on my mind.  I have been a little obsessive about reading this site, Googleing about vaccines/cures/new treatment - I think I am feeding my own anxiety (which there has been plenty of).

With all of these challenges - I also recognize some bright spots - I am fortunate to have a very loving and supportive primary relationship, financially we are ok (this could be a strain, but I think we will be ok), I have a great, experienced doctor who says this is manageable. In a strange way this has caused me to count my blessings in other areas -- there are many people who have and are suffering much more than I am, I have never been so present in just trying to enjoy the moment, I have been trying to manage my anxiety with meditation and positive thinking - which has helped, and I am grateful to those that have walked this path.

I have so many questions - and I know that nobody really knows the answers to my situation -- but a few questions that others may be able to help with are;

 - Has anyone established a relationship with a mentor?  I feel a need to connect with someone that has been through this - any thoughts on this would be appreciated.

 - I hear "it gets easier with time" - what has made it easier?  Any tips to ease the anxiety/shock?

 - I have no idea if I will start meds soon, but I understand that starting new meds can have some side effects - how do you manage work and social situations given the side effects?

Also - I am seeing a counselor on Tuesday.

Again - I really appreciate the postings and replys that I have read - while I wouldn't wish this on anyone, it does help hearing from others.

Thanks, JM

03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45%  VL 25
02/25/14 CD4   792/37%  VL UD
07/09/14 CD4 1004/39%   VL UD

Offline darryaz

  • Member
  • Posts: 450
Re: My Story, Thoughts, and Questions - 2 Weeks In
« Reply #1 on: June 24, 2012, 08:57:21 PM »
- I hear "it gets easier with time" - what has made it easier?  Any tips to ease the anxiety/shock?
The shock wears off and eventually you figure out that life continues pretty much the same as it did before.

That's what did it for me.

Offline Joe K

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  • Member
  • Posts: 3,619
  • 31 Years Poz
Re: My Story, Thoughts, and Questions - 2 Weeks In
« Reply #2 on: June 24, 2012, 09:09:27 PM »
Hey JM,

I'm sorry to hear about your testing poz and the first thing you need to do, is to take five long breaths and slow down.  Testing poz is unique for each of us and you don't know what it's like until it happens.  It's very normal, in the beginning to have all kinds of thoughts, emotions and questions and the best you can do, is to allow yourself to feel, whatever it is you feel, without the need to do anything about any of it.  Just because you think or feel something, does not make it real and right now, you are on overload.

It's great you have a loving partner and maybe you can begin to learn about HIV together.  By seeing a doctor and taking care of yourself, you are doing all the right things and what you really need is time.  This is a huge shock and it takes time for it all to sink in and until it does, you just have to ride the waves.  You can take comfort that there are very effective treatments, if you need them and your other concerns, such as disclosing your status, will come in time.

Right now, just take it slow, be kind to yourself and that includes your body, mind and spirit.  Do something, everyday, that you absolutely love, if even for only fifteen minutes.  Taking care of you is what matters now and this is one of those times where you need to control what happens, so don't make any rash decisions.

Most of all, believe that you can and will, live a long life in spite of HIV.  I've been poz for 27 years and there is a wonderful life waiting for you, as soon as you begin adjusting and realize that you have not changed, just your circumstances.  The comment about "it gets better with time", while sounding trite is the brutal truth.  We can empathize and offer you suggestions, but until you have had some time to adjust to your status, there really isn't anything else we can do.

Please feel free to talk about whatever issues are important to you and welcome to the forums.

Joe
« Last Edit: June 24, 2012, 09:11:22 PM by killfoile »

Offline Jmarksto

  • Member
  • Posts: 483
Re: My Story, Thoughts, and Questions - 2 Weeks In
« Reply #3 on: June 25, 2012, 01:04:17 AM »
thank you two for your reply, I really appreciate it

I realize that it is hard to have perspective right now, but knowing that perspective will come helps a great deal

Sincerely,
JM
03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45%  VL 25
02/25/14 CD4   792/37%  VL UD
07/09/14 CD4 1004/39%   VL UD

Offline Joe K

  • Global Moderator
  • Member
  • Posts: 3,619
  • 31 Years Poz
Re: My Story, Thoughts, and Questions - 2 Weeks In
« Reply #4 on: June 25, 2012, 02:40:42 PM »
thank you two for your reply, I really appreciate it

I realize that it is hard to have perspective right now, but knowing that perspective will come helps a great deal

Sincerely,
JM

Hey JM,

Yes, it's very hard to have any perspective when first testing poz, there's simply too much going through your mind, to even begin to sort it all out.  In a way, that's where we can help, by supporting your journey with empathy and compassion.  We do understand what you are going through and if we can help, in any way, please do not hesitate to ask.

If you find your mental state becoming extremely uncomfortable, I would urge you to talk with someone.  There are medications and therapy that can help you to cope with your situation and this is one of those times, where it's not only OK, but the right thing to do, in seeking whatever help you need.  I just hope you realize that becoming poz, does not change who or what you are.  It will be a difficult journey, but not impossible and with some more time, you will begin to accept that your life will go on, just as before.

I really encourage you to use these forums, to get whatever help, support or friendship you may need right now.  I know there is a limit of what we can do with the written word, but I think what you really need now, is to know that, you are not alone.  You are not alone and we care and understand, so feel free to speak your mind.

It will get better... I promise.

Take care,

Joe

Offline drewm

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  • Posts: 1,084
  • I have a sling and a dungeon :-P
Re: My Story, Thoughts, and Questions - 2 Weeks In
« Reply #5 on: June 25, 2012, 02:54:58 PM »
Welcome to the forums! Glad you found us.

Being diagnosed can be overwhelming. My dx was for full blown AIDS two years ago. My mind raced, could not sleep, impending doom was all I had on my mind. Honestly, it gets better. First and foremost, I am glad to read you are seeing a counselor. It took two months for my first psych appointment and that was entirely too long to wait.

As for your questions:

- Has anyone established a relationship with a mentor?  I feel a need to connect with someone that has been through this - any thoughts on this would be appreciated.

I suppose I consider the folks on this board as mentors. Several have become friends. One thing FOR ME is that I have stopped reading too much into this disease. If I have questions, I ask them here or ask my doctor but I have intentionally avoided WEBMD and other "internet" sources of information because they usually just make me more anxious.

 - I hear "it gets easier with time" - what has made it easier?  Any tips to ease the anxiety/shock?

Unfortunately, in my experience, time is the only real solution. You'll probably find that your actual life is not going to change that much after diagnoses. Counseling will help and talking to people you can confide in.

 - I have no idea if I will start meds soon, but I understand that starting new meds can have some side effects - how do you manage work and social situations given the side effects?

My situation was different in that I was diagnosed in the hospital with pneumonia, my CD4 count was 8 and my VL was 500,000. The meds had a lot of work to do. Honestly though, the side effects from Atripla were not that bad for me. (Please keep in mind that this varies with each person and the different meds). I would say that my mental health was a bigger issue in my adjustment then the meds.

Hope this helps. Just yell if you need anything.

Drew  ;)
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline Jmarksto

  • Member
  • Posts: 483
Re: My Story, Thoughts, and Questions - 2 Weeks In
« Reply #6 on: June 25, 2012, 08:11:32 PM »
thanks guys, I appreciate it

I have been trying to focus on all the blessings in my life, which there are many

Sincerely,
JM
03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45%  VL 25
02/25/14 CD4   792/37%  VL UD
07/09/14 CD4 1004/39%   VL UD

Offline Jmarksto

  • Member
  • Posts: 483
Re: My Story, Thoughts, and Questions - 2 Weeks In
« Reply #7 on: July 19, 2012, 05:41:21 PM »
Guys, again, thank you for your help and support - here is a brief update:

My partner has tested negative with an RNA test.  The doc said it is very, very, very, very (add a few more verys) unlikely she would be poz --- what a relief!!

I have started seeing a counselor who specializes in hiv and has been poz 14 yrs himself -- he has really helped get some perspective.

I have my numbers (see below) and the doc says we have some time to make decisions about meds.  He gave me three options: 1.) Atripla, 2.) Complera, or 3) Truvada + Isentres.

My one "weakness" if you will is that I am almost (maybe am) obsessed with the internet tracking the latest scientific/medical research and progress - which is distracting me from the responsibilities of daily life (work, etc.).

Again, thanks, and for anyone new here - I have found that stepping back, taking those deep breaths, and finding someone to talk to helps you realize that being positive is manageable.

Regards,
JM
03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45%  VL 25
02/25/14 CD4   792/37%  VL UD
07/09/14 CD4 1004/39%   VL UD

Offline POZinLBC

  • Member
  • Posts: 13
Re: My Story, Thoughts, and Questions - 2 Weeks In
« Reply #8 on: August 04, 2012, 02:36:39 PM »
JM,

I'm so glad to hear that your significant other tested negative. That is definitely awesome news. I too have a partner (male) and we have been together 11 years and he has tested negative also.

I was considering the same three regimens that your doctor suggested and I was wondering which one you have chosen and why?

FYI: I tested positive on 06/16/2012. As of 07/27/2012: CD4 821 and viral load 227,000.

Offline POZinLBC

  • Member
  • Posts: 13
Re: My Story, Thoughts, and Questions - 2 Weeks In
« Reply #9 on: August 04, 2012, 02:39:00 PM »
JM,

Oh I forgot to mention that I knocked Complera off the list because my viral load is too high. :(


Offline jkinatl2

  • Member
  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: My Story, Thoughts, and Questions - 2 Weeks In
« Reply #10 on: August 04, 2012, 05:13:26 PM »
Welcome! Sorry to be late to the party :)

I understand the Googling research and cure stuff. Trust me, it passes. Well, it wither passes or you go nuts.

As for drugs, I am on Isentress, Truvada, Prezista and Norvir. Have had VERY few side effects and great response in the three years I've been taking that regimen. I had major issues with one of the components in Atripla, however.



"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline mecch

  • Member
  • Posts: 11,493
  • red pill? or blue pill?
Re: My Story, Thoughts, and Questions - 2 Weeks In
« Reply #11 on: August 04, 2012, 11:08:05 PM »

 - Has anyone established a relationship with a mentor?  I feel a need to connect with someone that has been through this - any thoughts on this would be appreciated.

 - I hear "it gets easier with time" - what has made it easier?  Any tips to ease the anxiety/shock?

I don't understand what you mean by a mentor?  Explain.

It gets easier because its just becomes the new normal. Like any other shock, big change, or loss in life.  Also you learn as much as you need to know over some time, in the beginning, and then the anxiety goes away.

quote author=Jmarksto link=topic=43964.msg541628#msg541628 date=1340584105]

 - I have no idea if I will start meds soon, but I understand that starting new meds can have some side effects - how do you manage work and social situations given the side effects?

[/quote]

Nobody can predict what side effects someone is going to have.  Many people nowadays have very slight or none whatsoever.  If by bad luck your first combination does not agree with you, you can change it until you find one that you really don't notice all that much. 

That said, my first week or two on HAART - my entire body and wiring felt a bit different.  Not the first days but a bit later.  Then it went away, or I just got used to it. 

As for effects on work - you just plow through it cause eventually you'll feel normal again.  I had chronic fatigue one year when I was young and in a high pressure job.  Working through that was far far more difficult than some crap I've had to deal with related to HIV.   

You probably could do yourself a favor and STOP googling CURES, VACCINES, and NEW TREATMENTS.   There is no cure or vaccine.  There are plenty of decent drugs on the market now.  As mentioned above.  Good combinations that will not cramp your lifestyle. Available now.  No death, No sickness.  Just gotta figure out the expenses, really. Deal with any fallouts in relationships.  So register this - YOUR HIV STATUS is manageable NOW, with the tools available.  So that should fit into your current theme of counting your daily blessings.

Socially, there is NO need to disclose to anyone you dont feel like talking about this. All in due time.  Eventually when you are chill about it you might want to talk to more people casually, or not. You'll see that later on. 


« Last Edit: August 04, 2012, 11:11:34 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

  • Member
  • Posts: 11,493
  • red pill? or blue pill?
Re: My Story, Thoughts, and Questions - 2 Weeks In
« Reply #12 on: August 04, 2012, 11:15:13 PM »
My one "weakness" if you will is that I am almost (maybe am) obsessed with the internet tracking the latest scientific/medical research and progress - which is distracting me from the responsibilities of daily life (work, etc.).


Yes, again, best to cut this out.  Its counterproductive.
You have all the tools you need now, to live well. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Jmarksto

  • Member
  • Posts: 483
Re: My Story, Thoughts, and Questions - 2 Weeks In
« Reply #13 on: August 05, 2012, 04:11:36 PM »
mecch;  Thank you for your response.  By mentor, I think I mean someone that has some experience with being Hiv+ and has some perspective -- like you.  I was originally hoping to find someone in person, but I think the therapist I am seeing is filling that need.  I am also getting that perspective here, and I really appreciate it.  I am smart enough to know allot of this stuff (like not obsessing on the internet), but like most people it takes a bit for the emotional side to catch up with the knowing side -- that is the process of adjusting to the "new normal".

jkinatl2;  Thank you as well - I suspected that I wasn't the only one overdoing google. 

Thanks guys, I do appreciate it,
JM
03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45%  VL 25
02/25/14 CD4   792/37%  VL UD
07/09/14 CD4 1004/39%   VL UD

Offline mecch

  • Member
  • Posts: 11,493
  • red pill? or blue pill?
Re: My Story, Thoughts, and Questions - 2 Weeks In
« Reply #14 on: August 05, 2012, 09:37:11 PM »
Read about the basics of HIV, for example the lessons in this forum.  There is no hidden knowledge that you need to master to live well.  Doctors are the experts and sometimes people on forums like these who have lived through something personally.  I had major freak out when I was on sustiva+truvada (also known as atripla) and my HIV doc really poo poo a relationship to sustiva.  But people on here knew ALL about the CNS side effects Atripla can have for a few people.  I was glad that I got that information from several people here and could really insist with my doctor.  After he finally OK'd a switch to a different combo, and the crazies disappeared, i sort of forced him to acknowledge the snafu and he even apologised.  That said, he was expert on MOSTLY everything, otherwise.  So between a real good doc, and people here, you'll get the best medical knowledge, and more efficiently than reading through tons of research - especially if you aren't a scientist. Anyway, thats my approach.  As others said, the googling will peter out, or you could just stop it on purpose.  Of course, it takes a long time for the emotions to chill about everything. 
The drugs available today promise you a pretty normal life span and also promise pretty manageable side effects, if any at all.
You will hear about better drugs or a cure quite quickly when they are finally available, so you don't need to waste your precious time searching for things that dont exist yet, and weeding through the endless boiler plate of "promising" research on this that or the other thing.... 
« Last Edit: August 05, 2012, 09:40:45 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Rockin

  • Member
  • Posts: 494
Re: My Story, Thoughts, and Questions - 2 Weeks In
« Reply #15 on: August 13, 2012, 10:59:51 AM »
Read about the basics of HIV, for example the lessons in this forum.  There is no hidden knowledge that you need to master to live well.  Doctors are the experts and sometimes people on forums like these who have lived through something personally.  I had major freak out when I was on sustiva+truvada (also known as atripla) and my HIV doc really poo poo a relationship to sustiva.  But people on here knew ALL about the CNS side effects Atripla can have for a few people.  I was glad that I got that information from several people here and could really insist with my doctor.  After he finally OK'd a switch to a different combo, and the crazies disappeared, i sort of forced him to acknowledge the snafu and he even apologised.  That said, he was expert on MOSTLY everything, otherwise.  So between a real good doc, and people here, you'll get the best medical knowledge, and more efficiently than reading through tons of research - especially if you aren't a scientist. Anyway, thats my approach.  As others said, the googling will peter out, or you could just stop it on purpose.  Of course, it takes a long time for the emotions to chill about everything. 
The drugs available today promise you a pretty normal life span and also promise pretty manageable side effects, if any at all.
You will hear about better drugs or a cure quite quickly when they are finally available, so you don't need to waste your precious time searching for things that dont exist yet, and weeding through the endless boiler plate of "promising" research on this that or the other thing....

So true Mecch. I learned a lot more about HIV by exchanging posts here with people who are experienced with it than by my doctor. Doctors are the experts and you should always listen to their advises and orientations but they don't live with it and they are not the ones who are under treatment for life. 

Offline Jmarksto

  • Member
  • Posts: 483
One Year Update: Re: My Story, Thoughts, and Questions - 2 Weeks In
« Reply #16 on: June 12, 2013, 12:49:13 PM »
This week is my one year mark on testing poz, and wanted to look back and reflect on my process and progress.

First, I want to thank you all here.  While I am by no means the most prolific poster, I really do appreciate the information, support, humor, and acceptance of this community.  Thank you all.

I also recognize that I am still very much "in process" of accepting my status.  My heightened concerns for my health have been significantly reduced by continuing to educate myself, a great relationship with my doctor, and of course my meds.  My significant other has stayed by my side, and our relationship has improved in some ways (emotionally) and we are still navigating our relationship in other ways (sexually). I am still not comfortable with disclosure yet -- but am thinking about how and when over the longer term.  In reflection, the biggest challenges for me over the last year have really been of my own making -- such as being a little neurotic about worrying which is too internally focused and takes time and energy that could be directed toward my relationships and other more beneficial activities.
All in all, I am much more comfortable with my status, but again I am still learning, and still evolving.

For anyone that is newly diagnosed, I think the advice that was given to me in this thread was spot on - (time, education, medical help, and meds all make things much better over time) - although it was difficult to fully absorb at the time.

Again, thank you,
JM

03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45%  VL 25
02/25/14 CD4   792/37%  VL UD
07/09/14 CD4 1004/39%   VL UD

 


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