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Author Topic: I need help!  (Read 4747 times)

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Offline B99

  • Member
  • Posts: 33
I need help!
« on: June 22, 2006, 11:46:49 AM »
This may be a long post, I don't know.  I was just diagnosed with HIV a little over a month ago.  I am 24 year old black male.  My doctor called and told me over the phone and I took it better than I thought I would.  I didn't break down but I did have to cancel the plans I had that evening and the next day, just to ensure that I was okay.  Over the last month I have been doing my research about HIV and coming to terms with my diagnosis.  From my recollection, I was infected 3 years ago, right after college graduation at a point in time when I was extremely confused and vulnerable to a lot of behaviors and activities that before then and since I have no desire to partake in.  But I'm not even mad at myself for putting myself in the position to get this, as funny as that sounds.  I thought I would be lamenting my bad choices at a young age and the person who i contracted from, but I haven't (yet).  I have always had a take charge, "get it done", "this is what I have to deal with, so deal with it" kind of attitude.  Even when I went back for blood work 3 weeks ago, I was fine.  I hate doctors and needles and blood, but I pulled through okay. 
Now, today, I got the results back from my doctor.  And from my understanding they are good results.  CD4 500, 30%, VL 212K.  I AM COMPLETELY FLOORED. I don't feel sick or anything, but I am frightened to death.
I want to live, but what is life living with this disease?  I am 24, I haven't even fully started my career yet.  I haven't told my parents, which I assume I'll do once I get my emotions under a little more control.  Right now I don't want to tell them at all, but I don't know if I can go a lifetime without letting them know something like this.  But because I am black and within a black community that is a lot less understanding and informed about this disease, not telling them might be better for them in the longrun.  I don't know. 
Then the drugs!  I'm at a point where I'm probably going to start seriously thinking about treatment.  I hate the idea of relying on drugs (not to mention the American healthcare system) to sustain my life.  And how long will they work?  The anxiety of constantly worrying about whether your regimen will fail or if HIV will mutate or if you will live long enough for a next set of drugs is debhilitating.  Will HIV kill me in the next 50 years, 30, 15, 5?  I feel like I am going to die in the next hour.
And if I do live, can I have a career?  Can I have a family?  Dating is hard enough, let alone telling people your status.  Who will want me with HIV infection?  Will I die poor, on the streets, with no retirement money or inadequate healthcare?
Will I ever have sex again?  Right now it feels like the dirty deed that has left me scared and depressed.  Will I ever be able to enjoy it again?
Disclosure.  I haven't told anyone yet.  My friends are stilling treating me the same, family. I am still getting hit on.  All that will change once I become "the friend with HIV" or "the son with HIV".  I want to tell people, I don't want to keep this a secret, but being "that", I think, would kill me.  I've never wanted special attention for anything; whether because I was black, young, attractive, smart, whatever.  And HIV will become my adjective.  An adjective that no one will be able to overcome.  Even though I now have the disease, I, at times find myself separating myself from it.  Not on purpose, but kind of second hand.  It's like everyone is telling me the sky is blue, but I see purple.
My head hurts and I need to take a nap.  I feel (emotionally) horrible.  So for those of you who sat through this long post, I'm sorry, I just very confused and needed to get some of this out to someone, because right now I don't know what I'm doing or what to do.  (I'm crying right now for the first time since I've found out)
I need to stop writing for now.  But I'll be back later.

Offline Cliff

  • Member
  • Posts: 2,645
Re: I need help!
« Reply #1 on: June 22, 2006, 12:09:06 PM »
Hey B,

I can understand your frustrations and fears.  Everyone goes through that.  In time you will see that provided you make some adjustments to your life (like focusing on your health, visiting your doctor every 3 months and the times come for meds, taking them on time and every day) your life can be normal. 

I want to live, but what is life living with this disease?  I am 24, I haven't even fully started my career yet.  I haven't told my parents, which I assume I'll do once I get my emotions under a little more control.
You can still work and be HIV positive.  Plenty of people are able to, including me.  Being HIV positive doesn't necessarily mean you can not work.  Fact is you are recently infected so you will have access to life-saving meds that can not only stop the virus in its track but meds that can be tolerated (for the most part) enough to allow you to continue to work.  Will everyday be a walk in the park?  Nope.  But on balance things are much better in terms of being HIV positive than they were in the past.

No rush in telling anyone.  Tell them when you are ready.  You should reach out to your local HIV organization for help and guidance (even a support group).

Oh and welcome!!!!


P.S.- Your numbers aren't that bad.  Your immune system is holding up pretty well.
« Last Edit: June 22, 2006, 12:48:27 PM by Cliff »

Offline Cliff

  • Member
  • Posts: 2,645
Re: I need help!
« Reply #2 on: June 22, 2006, 12:18:49 PM »
oh and....

And if I do live, can I have a career?
Yes you will live and yes you can have a career.  It's up to you.

Can I have a family?
Yes.  HIV doesn't prevent you from getting married.  You can always adopt or have children via other means, should you choose to.

Who will want me with HIV infection?
Not all negative people are disinterested in dating positive people.  Plus you can always simply date people are HIV positive.

Will I die poor, on the streets, with no retirement money or inadequate healthcare?
Don't know.  Do any of us know that?  BUT there are things you can do, that everyone should do (HIV positive or not), to safeguard their future.  Including continuing to invest in your retirement plan.  Making sure you are always aware of your health insurance options (whether or not you are working, on disability, etc..).  These are things we and your local AIDS service organization can help with.

Will I ever have sex again?

Will I ever be able to enjoy it again?
« Last Edit: June 22, 2006, 12:21:19 PM by Cliff »

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: I need help!
« Reply #3 on: June 22, 2006, 12:56:15 PM »
Hi B,

Welcome to the Living with HIV Forum, and to this family.

Well, thanks to Cliff, our very upstanding African American Career person working overseas; I don't have to answer any of your questions.  Please take it easy on yourself, and try to stay away from the dark places.  At some point you are going to have to forgive yourself for this event in your life and move on, but this:
I have always had a take charge, "get it done", "this is what I have to deal with, so deal with it" kind of attitude.
will save your life.

As for life expectancy, there is no reason why you should change anything in your life for now, or the near future.  I would however, really think hard about starting medications this early in infection, because you need to have at least two or three labs done before your immune system levels out and you end up with a final measurement.  This is a very s...........l.............0.............w  disease in it's progression, and to make any decisions yet about therapy would not be prudent.

As for me, you can see I have been living with this bug for the whole time you have been on the planet; almost anyway, so you have nothing to fear at this point, except misinformation.  Please be sure your HIV Doctor is proficient, as many are not and they tend to give information that the Drug Companies give them, rather than checking the science and doing the right thing for you. 

Good luck, and I look forward to your participation here.

In Love and Support.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Blixer

  • Member
  • Posts: 712
Re: I need help!
« Reply #4 on: June 22, 2006, 01:13:26 PM »
Hi B,

I can understand your concerns and questions. I was diagnosed just five months ago.  Although I'm older and in the middle of my career many of the same questions came to my mind. I still struggle with some of them  and I also understand the anxiety.  The first step it to just take it easy.  Don't get all wrapped up in the future.  Take care of today.

First of all, things are so much better today than they were even a decade ago.  Having HIV is no picnic and the meds can be a bear sometimes, but they do provide hope.  Depending on meds for the rest of your life isn't all that unusual.  Lots of people have to take hypertension medications daily to lower the risk of heart attack and/or stroke.  You just have to take them for a different reason.  

Your life can go on very normal.  Alll of the things you have hoped for and dreamed about are possible.  Part of it is up to you and how you handle things.  Dating, sex, a family, a career... all of that is possible.  My doctors tell me that with good compliance to the meds that I have as much of a chance to live a normal lifespan as anyone.  We never know what might come our way.  But I"m told that I will most likely die from something totally unrelated to HIV.  And then we can always count on new discoveries, new medications, and maybe even a cure.  

In terms of disclosure, it took me some time.  I had two good friends that I told the first day and then anyone I has been with recently.  After that, it took me over a month before I told anyone else.  I finally told family and they have been very supportive.  The friends I have told have been a mixed bag.  Some of them I never hear from now.  That was a bit disappointing but it happens.  Disclosure was a good release for me.  I found that I needed to do that.

Anyway, hope this helps some.  There is  life after HIV. There are a lot of concerns and questions and a lot of unknown.  But I"m told that with time, things do return somewhat to normal and you can have a high quality of life for a long time with proper medical care.
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline dario

  • Member
  • Posts: 80
Re: I need help!
« Reply #5 on: June 22, 2006, 01:46:07 PM »
Dear B,

You are NOT alone.  The first few months are difficult to adjust. 

DO NOT RUSH.  Do not just go telling everyone you meet that you are positive.  But do reach out for groups or organisations that could help.

Hope! Hope!   And remember you are not alone.

... when I was young, I never needed anyone, making love was just for fun, those days are gone ... Eric Carmen (Raspberries)

Offline Trish

  • Member
  • Posts: 332
Re: I need help!
« Reply #6 on: June 22, 2006, 03:02:12 PM »
Hi B99,

I really don't have much to add to the great advice you have received by others here.  All that you have been told is on the money.

You will have a long and happy life if you follow the rules and give yourself a chance.  It is entirely up to you.  No one can force you to do things you don't want to do.  If you want to have a life, than go for it...it's all that any of us can really do.

As far as disclosing, don't rush...however, I do feel you need to tell your family at some point.  I know this is a scary thing to do, but nonetheless, it is something that could help free yourself.  Give your family a chance, but only when you feel the time is right.  You will know, your heart will tell you and trust that no matter what.

Living with HIV is no picnic, but it can be done.  I've been doing it for 17 years...you can too, if you want to.  The ball is in your court and your's alone.  Be good to yourself and continue to strive for the things you want in life.  Don't give up on your dreams.  We all make our own destiny and how you choose to get there is entirely up to you.

Welcome aboard and I look forward to reading more about you.  You've come to a great place and we are all here to support one another.  YOU ARE NOT ALONE!!  Definitely, not alone.  We understand and we care.

All the best,

"People grow through experience if they meet life honestly and courageously. This is how character is buit."  Eleanor Roosevelt

Offline aztecan

  • Member
  • Posts: 5,517
  • 32 years positive, 60 years a pain in the butt
Re: I need help!
« Reply #7 on: June 22, 2006, 10:36:03 PM »
Howdy B99,
Since others have already given you very sound advice, I will only say welcome to the forums and the family here.

This is a great place to come to for support, to rant or rave, lament or laugh. We do it all here.

I look forward to hearing more from you.


"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline B99

  • Member
  • Posts: 33
Re: I need help!
« Reply #8 on: June 23, 2006, 12:28:53 AM »
Thank you all very much.  Like I said before, I'm very straight-forward, and methodical most of the time, but I can't seem to completely wrap my head around this.  And when I think I have, something else pops up and blows everything away.
I just never thought I'd be dealing with issues of mortality at 24.  And it is really testing my strength (or the strength that I thought I had).  I've never had a lot to worry about growing up.  And I was always the one supporting others, telling them that they could do it, if they had a problem.  And you always ask yourself "How would I react if I were in that position?" And the answer was always "I would suck it up and move forward."  And that is just seeming so off base, right now.
We all know we are not going to live forever, but the demise of the invincibility factor of youth is a hard one to let die.  Most of us really don't lose it until we start to gain weight, or see wrinkles.  I don't know.  I think I might handle this better if I were older, but maybe not.  Time is not my friend anymore.  And though time is no ones friend, really, at least when you're young and healthy, believing that allows you to dream and hope, because (you feel) you have nothing but time.  And the reality of that dream that most of us buy in to all our lives, has just hit me hard.  We are mortal and are marching (some of us running) to the grave.
So I guess, a lot of my anxiety is the mourning the loss of this innocence.  But I guess if I would have been less naive in the first place I probably wouldn't have HIV.  It's funny, but the only time I feel not well (physically) is when I stress out about this thing.  Stress plus viral load, I guess.
Thank you all for letting me write my second monologue. :) They'll probably be shorter from now on. (Not promising it, though).

Offline thirtysomething

  • Member
  • Posts: 124
Re: I need help!
« Reply #9 on: June 23, 2006, 12:49:27 AM »
Hello B99,

You will live for a long time.. don't fret about the number of years you will live. I was diagnosed 3 months ago and I also felt exactly (and am still) like how you feel.  Things will be just fine.. Just try not to stress yourself out.

Take care.

Offline Robert

  • Member
  • Posts: 2,658
Re: I need help!
« Reply #10 on: June 23, 2006, 01:02:46 AM »
Keep giving us your monologues and make them as long as your want.  You'll always find someone here to read them.    Cliff answered just about all of your questions.  As you can see, just a turn in the road.  A different route, maybe, but you'll still get to where you're going.  Not to worry.  You can handle it.

I just want to reinforce disclosure, or lack of it.  Take your time before you tell anyone anything.  Once the word is out, that's it.


Offline dario

  • Member
  • Posts: 80
Re: I need help!
« Reply #11 on: June 23, 2006, 10:02:08 AM »
We all know we are not going to live forever, but the demise of the invincibility factor of youth is a hard one to let die.  Most of us really don't lose it until we start to gain weight, or see wrinkles.  I don't know.  I think I might handle this better if I were older, but maybe not.  Time is not my friend anymore. 

Dear B,
what you are saying is true.  Expressing yourself so clearly is a rare virtue.  It reminded me of  the lyrics of a song "Forever Young" by Alphaville.  I used to love this song (and still do) when I was a teenager in the fabulous 1980s!  Probably you were too young at that time. Lets dance in style, lets dance for a while
Heaven can wait were only watching the skies
Hoping for the best but expecting the worst
Are you going to drop the bomb or not?

Let us die young or let us live forever
We dont have the power but we never say never
Sitting in a sandpit, life is a short trip
The musics for the sad men

Can you imagine when this race is won
Turn our golden faces into the sun
Praising our leaders were getting in tune
The musics played by the madmen

Forever young, I want to be forever young
Do you really want to live forever, forever and ever

Some are like water, some are like the heat
Some are a melody and some are the beat
Sooner or later they all will be gone
Why dont they stay young

Its so hard to get old without a cause
I dont want to perish like a fading horse
Youth is like diamonds in the sun
And dimonds are forever

So many adventures couldnt happen today
So many songs we forgot to play
So many dreams are swinging out of the blue
We let them come true

... when I was young, I never needed anyone, making love was just for fun, those days are gone ... Eric Carmen (Raspberries)

Offline MoltenStorm

  • Member
  • Posts: 477
  • Poz & Fabulous
Re: I need help!
« Reply #12 on: June 23, 2006, 10:17:27 AM »
Welcome B99!

"The invincibility of youth" ... that's a bugger that gets a LOT of people into trouble (i.e. drugs, driving too fast, etc).

You're not the only one having to face his mortality at a young age. I'm 22, and I just found out I was HIV+ in April of this year.

I don't want to sound like a broken record, so I won't. Just know that you're going to be fine, and your life is going to go on as it would have. All of the things that HIV requires you to do (diet, exercise, etc) are things you should do without HIV.

If you feel scared, angry, or sad, you can always post here, and you'll find people to lift you up or give you that shoulder to cry on.

Again, welcome!

"Love is always patient and kind. It is never jealous. Love is never boastful nor conceited. It is never rude or selfish. It does not take offense and is not resentful. Love takes no pleasure in other people's sins, but delights in the truth. It is always ready to excuse, to trust, to hope, and to endure whatever comes." - 1 Corinthians 13:4-7, adaptation in A Walk To Remember

CD4: 555 / 29% / Undetectable - 7 Nov 2006
CD4: 555 / 29% / Undetectable - 5 Feb 2007


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