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Author Topic: living too much with hiv?  (Read 3585 times)

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Offline CalvinC

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living too much with hiv?
« on: August 24, 2006, 10:50:19 PM »
Hi all

I've touched on this topic on an earlier thread, but my feelings about it have changed: up until a couple of weeks ago, I didn't think much about my status (which is, so far, good numbers and no meds); now, especially after the amg, I am thinking about it to the point of distraction.

I'm not sure if this is simply a matter of information overload that is getting me down (self-talk eg: "You're a fool to believe you'll remain healthy for long blah blah blah.") or if, three months after my diagnosis, the full impact of what has happened is occuring.

I'm wondering, then, if others have had delayed reactions to the news. Certainly, when I first diagnosed, I wasn't happy: the guy I was seeing dumped me--oh, I'm sorry, I mean, he "chose another life direction"--and in the midst of that, I decided to undo (what had been up until then) some damaging life patterns (such as promiscuity-as-the-answer-to-everything). Being diagnosed seemed to be far down the list.

But now that the fact of getting dumped is settling (thank god) and that I'm learning how to change important facets of my life, the fact that I'm hiv now seems to be coming to the fore.

I dunno, maybe this is all a phase; but today, I was so exhausted discussing it with my therapist that I came home and slept for a couple of hours. I keep toying with the idea that I should stop coming to poz.com, but this is in many ways a wonderful resource....


Offline Lis

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Re: living too much with hiv?
« Reply #1 on: August 24, 2006, 11:07:39 PM »
i ignored my status for 16 years.... then one day.. i was in hospital with PCP.... life is funny that way.. until you have felt the pain.. you don't know the sickness... live your life sweetpea.. keep your numbers in check... and you can get through this 20 years later......

poz 1986....

Offline Life

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Re: living too much with hiv?
« Reply #2 on: August 24, 2006, 11:30:29 PM »
I was always a top end type guy Andrew.... It hit me the hardest the first two weeks... Then it began to ever so subtly dissipate... But it ain't gone......

Offline chart420835

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Re: living too much with hiv?
« Reply #3 on: August 24, 2006, 11:34:43 PM »
can u tell me how u feel and what happen after doing the treatment?

Offline IzPoz

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Re: living too much with hiv?
« Reply #4 on: August 24, 2006, 11:49:17 PM »

All I can tell you is that you need to focus on yourself.  Deal with your issues of the break up... but also, deal with your diagnosis.  Remember, this isn't the end of your life.  It's the beginning.

When I was diagnosed so many years ago, I truly believe that it was the beginning of my life.  I started seeing things in a new perspective, started appreciating things that I took for granted.  I eventually "forgot" about my status, and continued being who I am. 

It's your life.  You are in control of it.  Don't let the virus take control.

Enjoy your life, no matter what obstacles are thrown in your path.

What is that saying??  God gave us mountains so we can learn how to climb.
« Last Edit: August 25, 2006, 06:37:22 AM by IzPoz »
The reason angels can fly is that they take themselves so lightly. ~ Chesterton G. K.

Offline Jacques

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Re: living too much with hiv?
« Reply #5 on: August 25, 2006, 01:00:06 AM »
Hello Andrew,

up until a couple of weeks ago, I didn't think much about my status

I'm not sure if this is simply a matter of information overload that is getting me down

I think you've pinpointed something here. I was diagnosed in 1987 and somekind of ignored my HIV status and continued to live a normal life until 3 years ago. Of course I kept myself closely monitored by my doctor, chose to go on meds in 1996 etc.. but always refused to pay extra attention to my condition. In fact I had no contacts with other HIV persons until 3 years ago. Well, suddenly I  felt curious about  how others were dealing with the disease. So I went to HIV social organisms and involved myself.

 That was a mistake. After seeing so many scenes of horror I became 
more paranoiac and developed and HIV info addiction that finally gives me nothing else than more worries.
My philosophy before was: "Desease or not, life goes on as usual" . I wish I could get back to that philosophy. I'm afraid that I'm now living to much whit HIV.

Living positively since 1987
latest lab :july 2010
Undetectable Cd4 1080
43% on Reyataz/Norvir/Truvada

Offline ds4146

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Re: living too much with hiv?
« Reply #6 on: August 25, 2006, 01:29:20 AM »
I think that is something that most of us who are just "beginning" wonder. It seems that just when I begin to start to feel that I can handle this, something comes along to slap me across the face to say, "I'm still here!". Yesterday, I went to do a intake evaluation for a meeting with others with HIV, one of the requirements was to bring a letter from my Dr. stating that I was HIV. That was an eye opener, not something that will hang on the walls of my home, but it sure did finally end the hopes that there was a mistake somewhere along the line. I have been diagnosed for six months, and everytime I think that I have reached a point where I can handle all of this, something new pops up. And it seems to happen in two or threes, currently I have a rash, again, and I get angry, ask more questions, read more, and get information overload. But is it overload, or looking out for yourself? I don't know, I am learning as you are and hope to find the answers, most of which I feel no one can answer, but I will not put my head in the sand ever again. I guess what I really wanted to say after this blah, blah, blah is more information is better, take what you want, use it too your advantage, and follow your instincts. I hope to do the same, hard as that is some days. Take care.!


Offline sweetasmeli

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Re: living too much with hiv?
« Reply #7 on: August 25, 2006, 03:13:18 AM »
Hi Andrew
I think you need to cut yourself some slack and give yourself a pat on the back for how well you've coped so far. Three months post-diagnosis is a very early stage on this rollercoaster ride. I'm over 3 and a half years into this experience now and I'm still flying up and down. Others are doing better than me, some are doing worse. I think there is no set pattern with how we are supposed to act or feel on this journey, as there is no set pattern with most life events. I think the healthy approach is just to allow yourself to move with the ebbs and flos.

The fact that you went to Montreal shows how much courage you have - but it wouldn't surprise me in the slightest if you found the whole event as equally overwhelming as enjoyable. Going to an event such as the AMG is a huge part of acknowledging and accepting your hiv status. Acknowledging and accepting one's hiv status is more difficult than anyone without hiv will ever begin to comprehend. I said in one of your other threads that sometimes I dont know if I will ever fully accept it. I am very aware that life is not about the hand of cards we are dealt but how we play them. But I am also aware that we are all human: we feel, we make mistakes and we are also capable of amazing things.

You say the fact that you were dumped is 'settling' now. If I'm wrong forgive me, but I still detect pain through your words when you speak of it. That's fine, thats normal. Being dumped is no picnic at the best of times. Being dumped because of having this virus is a double whammy and a lot to get your head around. Allow yourself to feel whatever you feel. Just try not to allow it to poison or cripple you.

I remember after my first session with a cousellor, I slept for hours afterwards...it completely drained me!

I take mini-breaks from the forums from time to time, as and when the feeling that I need to arises. I too find it a useful resource and I have also made a handful of friends on here. But sometimes I find the whole hiv saga too much, so I step back from it and give myself a breather. I think that's normal.

To me your post tells me you are having a normal healthy reaction to a difficult life event. I said in your other thread and I'll say it again here: I think you're doing great!

Melia :)


/\___/\       /\__/\
(=' . '=)    (=' . '=)
(,,,_ ,,,)/   (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

Yeia kai hara (health and happiness) to everyone!

Offline allopathicholistic

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Re: living too much with hiv?
« Reply #8 on: August 25, 2006, 08:45:49 AM »
I dunno, maybe this is all a phase; but today, I was so exhausted discussing it with my therapist that I came home and slept for a couple of hours. I keep toying with the idea that I should stop coming to poz.com, but this is in many ways a wonderful resource....

How about a temporary break, like 3 or 4 days? I know how stimulating this site can be as I'm an armchair psychologist sort of. Or, maybe you can apply a temporary shift in focus, i.e., if you find yourself gravitating toward the more emotional posts, you can be pragmatic and shift to the more tangible treatment/medicine/nutrition posts. The 'happy dance' posts can be superb pick-me-up s

Anyway ...You said you wondered if others had delayed reactions. My answer would be: Yes. Me. 5 years delayed reaction.

Offline Matty the Damned

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Re: living too much with hiv?
« Reply #9 on: August 25, 2006, 08:51:46 AM »

If you're up to it maybe helping out in the Am I Infected? Forum can help. You need to be abreast of the AIDSMEDS transmission lessons and ensure that you stay on message, but a stint dealing with the Worried Wells can be very rewarding. And frustrating.

It's always nice to know that there are people FAR more pathetic than yourself. It keeps me going. ;)

(Who enjoys lording it over the feckless)

Offline AlanBama

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Re: living too much with hiv?
« Reply #10 on: August 25, 2006, 10:43:03 AM »
Hi Andrew

I understand what you are saying, and I believe the way you are feeling is perfectly normal.   It's all about balance in our lives...AIDS is a virus that I have, and it's a part of me, but it is not all that I am.  It is only natural that your focus is directed towards HIV right now, especially after AMG.   I believe you will reach the point where you just view it as another aspect of your life, and not allow it to have quite so much impact on your emotions and feelings.

I would love to tell you that it will be easy to deal with this virus, but we all know that would be a lie.  I'm glad you're working through these issues with your therapist, I think that is very important.   I'll let you in on a little secret that has sustained me for quite awhile now:   gratitude.    There is so much power in those two little words, "Thank You".   I am thankful for the life I have, for my restored health, for the ability to get around, for so many friends and a family who loves me.   I started keeping a Gratitude Journal in 1991, when I progressed from HIV to AIDS.   Every day, I would write down three things I was thankful for.   Sure, some days they were VERY small things....but it really helped me.

Best of luck to you, and I have confidence that you will be just fine.   There is no reason that you cannot lead a rewarding and fulfilling life.

"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline wellington

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  • Don't sweat the little things.
Re: living too much with hiv?
« Reply #11 on: August 25, 2006, 10:48:30 AM »
Watching Jerry Springer usually puts me on the right path again when I falter. Judge Judy was particularly on last night as well. I have to watch my dosage of each though - usually 5 minutes or less is all that is required. I strongly echo what others have said: don't beat yourself up. What you're expressing is what I've felt as well so take some comfort that we've both found a common thread. Screw the word normal. It's trite and over-simplistic.

It's important to keep abreast of your health, too. If your numbers are good and you're not getting sick from anything, keep doing what you're doing until, if it ever does, a time arrives to make a change. As for the not being as promiscuous, I hope you have just decided that there are a few things that shouldn't be done rather than cut out that whole area altogether. I think repression is a terrible waste. Indulge but be aware :D

As much as it may sting, consider yourself lucky that the person you were seeing has moved on. He wasn't strong enough for you and frankly, you deserve better. Now you will have time to meet others and enjoy their company instead.

To put this into context, I was diagnosed in February 2006. At that time I was already suffering from undiagnosed PCP and by the time May rolled around and I spent several days in ICU, I'd already lost about 30 pounds. When illness like that bites you in the ass you tend to spend alot less time worrying and more time taking the reigns to improve and maintain a more satisfying quality of life. I've had some really horrible days since where all I could manage was to cry and think about ending this life. But that'd be too easy and I'm far too tenacious. If a nurse is putting a catheter up your penis and you can look at her and, smiling, say "Does this mean we're acquainted?" then you know you're fully alive. :D

Offline CalvinC

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Re: living too much with hiv?
« Reply #12 on: August 25, 2006, 05:01:44 PM »

Thank you all for your kind replies. I have read them all over twice, and I will read them over every day for the next week until the messages sink in.

Perhaps what might be a better indication of what I'm feeling is that I'm simply broken-hearted. Oh, not just about the guy who left me, but that this hiv has happened to me and I have to now change, beyond what changes I am making in my life. This afternoon, I got so overwhelmed that I had an anxiety attack of sorts, while I was in the middle of this huge sports tradeshow down at the enormous Toronto Convention Centre: all that panic and aloneness in the midst of so many people. But the feeling passed.

There is the scene, near the end of Wharton's The House of Mirth, where Lily is speaking to Selden of her realization that her old life and ways must now pass on. Lily says, "there is someone I must say goodbye to. Oh, not you--we are sure to see each other again--but the Lily Bart you knew. I have kept her with me all this time, but now we are going to part, and I have brought her back to you--I am going to leave her here. When I go out presently she will not go with me. I shall like to think she has stayed with you--and she'll be no trouble, she'll take up no room." She went toward him, and put out her hand, still smiling. "Will you let her stay with you?" she asked. [...] She looked at him gently. "Do you remember what you said to me once? That you could help me only by loving me? Well--you did love me for a moment and it helped me. It has always helped me. But the moment is gone--it was I who let it go. And one must go on living. Goodbye."

And I think of that "moment" not as belonging to a person, but to the life I used to have just a few short months ago. I think of that Andrew, so often scared of the world, but so often too amazed by the possibilities that life held out--and now I feel I have been the one to let it go. And here, in this now of hiv, I need to find a new purpose, and today, as I sit here typing this, through all these tears I just can't see one, it's too hard to continue looking back at the life I thought I had, that I was master of. It is gone and it was I who let it go. But I will take solace in what you all have written and I'm sure then that this cloud shall pass over. Thank you again.


Offline ndrew

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Re: living too much with hiv?
« Reply #13 on: August 25, 2006, 06:23:57 PM »
Hi Andrew,

I recently had a similar feeling while I was in a room of 70-100 people, it was a surreal moment of feeling I was so different and other, of being alone and being an alien beneath my skin.  I know that empathy, strength and wisdom can come from this.  After 2 1/2 years since being exposed, I feel like I am dreaming through layers of my life, but I like to think I am waking up...  I feel like a better person.  The grieving process has been long.  I think what is hard for me about these forums is that IT IS ALLOWING ME TO GRIEVE and to share and work though all this pain.  IT IS INTENSE and sometimes to much, but how else can I grow?  I grieve for my own child-like Andrew, but I love the new one so much more!!

There is care and love for yourself in your words...

With care,


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