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Author Topic: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?  (Read 26189 times)

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Offline USNRET

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I was diagnosed with HIV/AIDS in August 2005, CD4 at 11% but was never sick, can't even recall the last time I even had a cold...well over 5 years or more if I can recall and never had any OI's.   I started meds the day after I got my CD4/Viral load results in August.  I did not even think about wether or not I should take meds, I just did it.  The Sustiva was a little wierd for the first week.  I also take Truvada.  My CD4 %  over doubled in about 6 months and I feel normal again.   I do not think about HIV anymore, I consider myself normal and healthier than many people I know.   How many of you don't think about HIV very much any more and live or try to live life normally or better than you did before your diagnoses.

Offline jkinatl2

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #1 on: June 20, 2006, 07:27:45 PM »
I think its great that you have done so well! Not many people do that well for that long.
"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 allopathicholistic

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #2 on: June 20, 2006, 07:31:21 PM »
when i have to take meds i think of it. when i boo-hoo over my vanished 9-year career on wall street i think of it. i think those are the main 2 times. the former doesn't make me boo-hoo. the latter does.

Offline jordan

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #3 on: June 20, 2006, 07:40:53 PM »
I was diagnosed in February of this year and immediately started Sustiva/Truvada no questions asked.

I kept telling myself "business as usual."  However, I do think about HIV everyday in some small way (e.g. when I take my medicine, when I log onto the forum, when I see a news report, etc).

I don't let it control my life...I just am more aware than I ever was. 

If you think your lonely now, wait until tonight.

Offline blondbeauty

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #4 on: June 20, 2006, 07:45:09 PM »
I live my life better than before my diagnosis. But I still think of HIV every day, but it doesn´t terrify me as in the beggining. Once I start meds I will feel much safer.
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline AlanBama

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #5 on: June 20, 2006, 07:46:44 PM »
It has a way of reminding me, even when I try NOT to think about it.
"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 whizzer

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #6 on: June 20, 2006, 08:35:01 PM »
Diagnosed OCT 05.  My life is the same as it was pre-HIV.  Same job, same friends.  Same hobbies.  I hardly think about HIV when I'm working or out having fun, though little thoughts have a way of popping into my head.

But I always think about HIV every day, at least twice a day.  I think about it when I look at the clock and decide what time I need to eat in order to take my meds on schedule.  I think about it while I'm mixing my Fuzeon as dinner cooks.  I really think about it when I hear the hiss of the biojector and feel the stinging kiss of Fuzeon in my belly or thigh.  I don't really think about it when I swallow my oral meds - they look just like my vitamins - but I check a couple of times to make sure I took them.

I've never in my life been so tied to the clock.  Meds.  Every 12 hrs.  Every day.  Forever.  I try not to vary my dosings more than 15 min on any given day.  My life's schedule is planned around eating, mixing, and taking meds.

I am forever changed by HIV.  Proviral DNA has bonded with my own during cell division.  It has become a part of me - I have become a factory for its reproduction.  It is in my brain.  It may  affect my memory.  Will it affect my thoughts as well?  And if it does that, will I still be me, or will I have become some sort of man/virus hybrid?

Maybe in time 'll come to a place where it no longer bothers me and I hardly ever think about it.  But I doubt it.

Offline J.R.E.

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #7 on: June 20, 2006, 08:43:01 PM »
Hello,

You have had a great response to medication. Congratulations !! I try not to let HIV be a controlling part of my life on a daily basis. It's mostly, while I am taking the meds, and depending on how I feel that day. I always try to live my life as best as I can HIV/ aids or not. It does have it's tough times, but I don't dwell on it everyday. I would't be living much if I did.


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline Bartro

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #8 on: June 20, 2006, 08:48:40 PM »
It's "business as usual" for the most part.  Sometimes when I'm falling to sleep my mind wanders to a bad place, but this is getting better.  I continue to work, even harder than before.  I seem to have more energy.  I guess the Truvada and Sustiva are responsible for this.  Some health problems I was having have disappeared.   Actually I feel great.
Rusty

Offline cubbybear

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #9 on: June 20, 2006, 08:56:19 PM »
Compared to when I was diagnosed HIV/AIDS/PCP and what ever else 8 Months ago I rarely think about it now that I am feeling better and the meds seem to be working okay. 

Usually when my cell phone alarm goes off to remind me to take my meds, I remember I have HIV, but usually a short while after I'm oblivious to what is going on in my body on a cellular level, unless the Sustiva makes me wobbly on my feet, which is now a rare event. 

When I do think about HIV, it's not in the obscessive, OMG I'm gonna die, fear of death way that I used to think about it.  Now, when I think about it, it's usually because I am logged on here, with friends, or doing personal research, so it's never in a negative context.

There are times when I think about it though and it brings me down, mostly when I think I might have to disclose in future to someone I might have more than a passing interest in, and possibly facing rejection because of my status.  I've not normally met with rejection, so this is perhaps one of those lessons in life I am supposed to learn.

What doesn't kill us, makes us stronger!
There's a bear in there!
Positive since 2000
Diagnosed 17/9/2005 CD4 35 VL 293,000
Meds 23/9/2005 Sustiva/Truvada
Currently CD4 232 VL Undetectable

Offline Sdgirl

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #10 on: June 20, 2006, 09:22:14 PM »
There are days when I don't even think about it, and others when I do.............but like others have said, it is not who I am so I just deal with it.  Although not on meds yet, I'm sure when I go on them, I will be forced to think about it more often..................BUT I am a Diabetic and take shots everyday and I rarely think about being a Diabetic, so maybe not!

Lisa
"Our deepest fear is not that we are inadequate.  Our deepest fear is that we are powerful beyond measure.  It is our light, not our darkness that most frightens us.  We ask ourselves.."Who am I to be brilliant, gorgeous, talented, fabulous?  Actually, who are you not to be?"

Offline Life

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #11 on: June 20, 2006, 09:22:52 PM »
I really don't know what to think about "it"?  Do I think about "it"...  Oh yeah..  I have never been sick with an OI,  never lost my energy etc.  It's almost like back in my swim meet days.   I would always size up my opponents and try and figure out how to win.  But for me this race does not seem to have started yet.  But it has......  I have to convince my head that the race has begun and I am "winning".  I am not still on "the block" waiting for the gun to sound.  This is it... No dress rehearsals..   The curtan is up!   Give em a good show!

 :)
« Last Edit: June 20, 2006, 10:03:35 PM by Eric »

Offline CalvinC

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #12 on: June 20, 2006, 09:45:44 PM »

Great thinking, Lisa and Eric!! Very uplifting, thanks! I too am not on meds (yet?), but, yes, it's not who I am and we gotta give 'em a good show! Definitely!!

cal

Offline USNRET

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #13 on: June 20, 2006, 10:10:41 PM »
Yeah I do set my alarm to take my meds, and that reminds me to take my meds aslo.   I guess I want to say is that I don't let HIV control me anymore, I control HIV.   I don't take life for granted or dwell on what is done.   I live my life as normally as possible.   At first I would let it get me down and that wasn't living.  Life is truly short...HIV was a wakeup call, but I put it in the back of my mind and I am moving forward.  I try to squeeze as much as I can out of life.   You don't know what tomorrow holds so live for today and don't dwell in the past.   

Offline USNRET

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #14 on: June 20, 2006, 10:12:20 PM »
I like your post Eric, that is how I feel!! ;)

Offline thirtysomething

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #15 on: June 20, 2006, 10:21:34 PM »
HIV has always been in my mind 24x7 since the day I was diagnosed. I had to take extremely important decisions in last 3 months (changing country, new job).. and I hope I've made rational decisions.

Offline otherplaces

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #16 on: June 20, 2006, 10:33:48 PM »

I have an obsessive nature. On good days I think about HIV all the time. It just doesn't bother me. On bad days, like today, it devours me.

I guess the worst is that when I see a beautiful woman I always think that I have HIV and I would never have a chance.

I'm sure this sort of crap will eventually go away, but nowadays that's how I live.


Offline Life

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #17 on: June 20, 2006, 10:54:49 PM »
One thing that made me feel better about HIV??  Its sorta weird....  I found pictures of the HIV virus..  I blew the virus up to about the size of 8 by 11 (in color!).   I went out to the rifle range, and pinned a bunch of these up and blasted em for about an hour with my friends M16..   Try it, it will make you feel better!   

I screamed, I yelled every dirty Harry one liner as I squeezed the trigger..  YES!

PS... I hate guns, but in this case,  it was really kewl... ;D

Oh yeah,  I forgot to mention...  I am a very visual guy..  "Seeing is believing," type of dude...

I had 30 extra copies of my 8 by 11 "virus" (color).  I ran those through our industrial paper shredder in my office.    Now this shredder does not just make long streamers, it crunches em every which way.   And running 30 pages through the shredder makes the engine really scream and moan like it is really chewing the shit out of what its working on.  Well I ran the virus thru the shredder and that felt great to.   I took the bag of shredded virus home and put it in the grill and lit it at night.   POOF!   INSTANT INCINERATION!..   Way Kewl!!!!

I like to think that's what I am doing to the virus in my body everyday...
« Last Edit: June 20, 2006, 11:24:45 PM by Eric »

Offline DingoBoi

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #18 on: June 21, 2006, 12:10:29 AM »
i think about it everyday... well, because i'm here everyday.   If i didn't need the support this place provides i wouldn't come here so often... even if it's to just chat in offtopic.

I don't think i think about it all the time, but i do think about it often.

i'm 2 years into diagnosis.


Offline Oscar

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #19 on: June 21, 2006, 12:25:47 AM »
Even after 20 years I still think about it everyday. Mostly a lot of what if's and about the former boyfriend I infected. I have quite a bit of guilt about that. We lost contact about 9 years ago. I think about him everyday and wonder if he is doing ok. I think about the person that infected me & how he died in the late '80's. I have shed so many tears over this through the years and have gone from sadness to anger to acceptance, shame and back again. It's a viscious circle for me that I can't seem to break. I could go on and on about what HIV/Aids has taken away from me. But I also have the love and support that this forum has given me with out that I don't know where I would be.

Dan

Offline jkinatl2

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #20 on: June 21, 2006, 12:38:33 AM »
I submit that anyone who signs up here, who posts and/or reads these forums, thinks about HIV at least some of the time.

And I also submit that it is in no way a character defect to do so.

"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 HIVworker

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #21 on: June 21, 2006, 01:18:43 AM »
I think about it a lot.

R
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline lydgate

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #22 on: June 21, 2006, 01:37:10 AM »
Oh, I think about it a LOT. Not 24/7 but close; and I don't have the meds to remind me. But, I've been taking anti-depressants for the last 11 years and taking the pills every day is just part of my routine, like brushing my teeth; the act of swallowing some yellow capsules doesn't make me think about depression.

I think it's part of my coping mechanism. I'm the sort of person who over-researches everything, especially all things medical. Some doctors love me, some doctors are exasperated/annoyed by my "presumption," my eight pages of notes and questions. For the past 10 months, I have been reading, almost obsessively, HIV-related material. It's the way, as I said above, a way of coping. For me, the more I know about this damn virus and the impact it's had on all our lives, the more "safe" I feel.

Jay
Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

George Eliot, Middlemarch, final paragraph

Offline allopathicholistic

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #23 on: June 21, 2006, 02:54:01 AM »
some doctors are exasperated/annoyed by my "presumption," my eight pages of notes and questions. 

tough cookies for them  :P that's their job

Offline heartforyou

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #24 on: June 21, 2006, 03:46:17 AM »
HIV is a part of me.

But Herman comes first.
I am a man, and I have HIV.

Nowadays I think of HIV more than in the past, but mainly in a positive way. As it has brought me so many new friends.

Dan

Quote
I have shed so many tears over this through the years and have gone from sadness to anger to acceptance, shame and back again. It's a vicious circle for me that I can't seem to break. I could go on and on about what HIV/Aids has taken away from me.

Then it is time to finally let go and feel and ACCEPT the love.

Do you realise how many people would give their fortune to be in a place like this?
Where can you openly write about your emotions, deepest sorrows and pains, without being judged?
With "strangers", so to say?
I know many people envy what I have here.
HIV has taught me to be open about my deepest thoughts, on here I mean

We have all been very hurt in our lives and yes, a major source is HIV.

But let us never forget:
HIV has brought us together.

How in the world would I  have a :
RICH, who still doesn't believe how true my feelings are, but knows deep inside. 381
DAN, cute and witty, friend and supporter in my hardest days
MOFFIE, my soulmate and source of endless true wisdom
WATER DUCK, with golden hands and heart
JOEMUTT, who I see blossom and heal, and is teaching me every day
ANNIEBC, purest soul, always there, kind and strong person
BUCKO, saviour, writer, pure soul
MATTY, who grabbed that little piece of me in depression and dragged me out
JEFFREY, stranger became friend, and we will meet and share
EIRIN, vibrating with energy and on the same cloud
JODY, my NY connection
TRISH, who comforted me when I had to leave TORONTO, leaving Rich and AM
RAB, who held me in front of the 1000's of AIDS deaths at the memorial site
VAL, optimistic and true
CANUCK, my french Canadian connection, who shares songs with me
MARKMT who came to my resue in spring


I am just mentioning a few........if I sat down and gathered more names I would fill a page

So, do I think about HIV,

yes

Honoured to know you all
I tching to meet you all
Vivifiying my life with AM

Hermie

« Last Edit: June 21, 2006, 11:39:36 AM by heartforyou »
Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

Offline edfu

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #25 on: June 21, 2006, 05:47:49 AM »
I have to consciously work at it every single day, every single hour, NOT to think about it.  These efforts not to think about something exhaust me more than anything else I do.  I see a psychiatrist and a therapist, take psychotropic medications, and nothing seems to work for very long.   

I'm a longtime slow progressor, infected in 1982 or earlier but asymptomatic until 2001.  During those almost two decades I lost over 150 ex-lovers, best friends, friends, acquaintances.  I've been living with this fucker for 25 years (I'm 63), having been involved with it since 1981 (when we didn't know what it was) and joined Larry Kramer in spreading the word on Fire Island that something horribly evil was happening during our sexual activity, for which I was ostracized. 

My VL is undetectable, and my CD4 is in low 500's now.  My only OI were two KS lesions, now in remission.  But HIV obsesses me.  It has been the major event--the defining event, the most important event--in my lifetime, in every way I can think of. 
« Last Edit: June 21, 2006, 06:35:31 AM by edfu »
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline randym431

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #26 on: June 21, 2006, 06:31:00 AM »
Its now easy to ignore it for me. I just make sure I take the meds daily and on time. Thats my big obligation I can not ignore. After hearing VL undetectable three lab times now, since on meds, I plan on trying to take it as the norm. I know a few hiv people, and all have been undetectable for many many years. I know of no one (personally) that does not have great results long term, even before I ever thought I'd see the day "I" was also in this group (hiv+). Still, even now, I find "me" being hiv+ hard to believe. Like a dream you expect to wake from someday, somehow.

But I can get thru the day without thinking about it. I feel normal, look normal and I too am healthier than most people I know. I feel I look better health wise too, than most friends and relatives. I just patiently wait for better meds and maybe even a treatment that will make hiv harmless. I don’t expect a cure, but do think making hiv harmless may be something we see one day.

One thing that took my mind off my hiv sorrows was seeing other family members having troubles of their own far worse than mine. My sorrows seem so self centered. poor poor guy getting hiv, compared to them. I see my brother in law (my age) with very bad diabetes, sores, and he may lose a foot.

My partner has cml leukemia, He takes "wonder meds" (at $3200 a month) to keep it at bay (kinda like us and hiv), but I worry about how long his leukemia magic pill will work. The average is 5 years. I think there are other leukemia meds now available if his current starts to fail. That all worries me, and I try to enjoy every day together rather than bickering like we old married people tend to do.

Also, my 3 year old nephew, a real cutie, started having seizures for no reason and stops breathing. They can't find any cause. I worry about him too.

My dad has had three heart attacks just this year and NOW they found a stomach aortic aneurysm they are watching closely. He's 78 this month.

So me? I feel selfish even worrying when I am basically healthy and normal, as that goes. I guess my "in the back of the mind" fear is going detectable and the meds starting to fail. For me thats something I think about now and again. Not sure why I should. I guess I feel I should have something to worry about. Like just waiting for whatever to come. I know how fast and hard this virus does its damage when there is a vl present. Having seen such great results and getting my weight back and feeling great (again), I fear the virus even more than before. And taking the meds daily and on time is nothing to take lightly.

And I fear going on too long, like writing a book, on the forums....woops!

AND... and I fear GW BUSH. Who the hell does he think he is? What the hell does he think he's doing. And HOW THE HELL DID HE GET THERE  anyway??? ( a little take-off on the end scene of the movie ELECTION with Reese Witherspoon)
« Last Edit: June 21, 2006, 06:40:59 AM by randym431 »

Offline ademas

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #27 on: June 21, 2006, 08:43:05 AM »
I think of it everyday.
Like edfu, it has had a huge impact on my life, both in loss of lovers, friends, acquaintances--hell, my entire peer group from the 80's and first half of the 90's was decimated--and now with my own symptoms and physical appearance.
xox


Offline aztecan

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #28 on: June 21, 2006, 09:00:46 AM »
I am/was a long-term, slow progressor. Tested positive in 1985, my first doc thought I was infected in 1980. I guess that makes me a golden oldie.

Yes, I still think about it daily. Like Edfu, I watched too many people die. Unfortunately, I am still watching too many people die. Right now, there are two whose continued existence is questionable. They are trying very hard, but ...

I think about it when I take my meds three times a day. I think about it when I schedule my meals because my meds must be taken on an empty stomach.

I think about it when I shave in the morning and see what lipo is doing or on those bad days when the PN deadens my feet to the point I catch myself stomping rather than walking because I can't feel the ground.

So, yes, I think about it. But don't I allow it to control my life. I still live each day to the Nth degree. I also am getting older, but obsessing on the fact I am now approaching AARP age doesn't define me. It is there, I see it and (believe me) sometimes feel it, but it is and there is nothing to do about it.

Think about HIV daily? Yep. Let it control my life or destroy my zeal for living? Not yet. I hope it never does.

HUGS,

Mark

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

Offline ozzie

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Re: DON'T REALLY EVEN THINK ABOUT hi5 ANYMORE, HOW MANY PEOPLE DO?
« Reply #29 on: June 21, 2006, 09:52:44 AM »
hey guys! im back! I hope you remember me ;)
i've been really busy and without internet for a while. Also my computer had problems but now im back.
back to topic...

I do think about HIV everyday. It might just come out of nowhere or my friends talk about hiv, or i see some ads on the tv or train etc... its always there, 95% of the time i dont mind but sometimes i do. Sometimes Im just sitting in the train and my tears start running down my face and i have to hide it, but i feel way better compared to the first month after knowing. Another thing is that I have this diarrhea  that keeps coming at least 2 times a week and a sore throat every morning. Things that remind me of HIV everyday :(.
But life goes on and we have to learn and live with it, and thats what im doing or trying to do ;)

missed you all!

Offline Christine

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #30 on: June 21, 2006, 10:35:25 AM »
I have some days that I don't think about it, but most days it is right there hitting me in the face. I have had a series of OI's this past year, and a huge amount of nausea, diarrhea, vomiting from med side effects, so it is hard to not think about it.

When I was first diagnosed, I still worked full time, and my health was very good, so I did not think a lot about it. I think it depends on how much hiv impacts ones daily activities and routines.

For example, I went grocery shopping yesterday, and my stomach was bothering me. So I had to make sure I used the bathroom a few times before I went, took some Imodium so everything stayed inside at least while I was in the grocery store, then had to hurry back because I was starting to feel crampy and nauseated. Some days are a challenge.
Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline kcmetroman

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #31 on: June 21, 2006, 10:51:18 AM »
Boy, I have responded to a 100 threads like this.....
Simply put, it is what you make of it.  If you let it overrun your thought process, it will dominate you. It is important to remember that what you have is a virus.  Not a mental disorder as many courts see it.

Offline Trish

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #32 on: June 21, 2006, 11:32:49 AM »
Well, 17 years later, I still think about HIV on a daily basis.  I will not kid myself into believing that it is not a part of me.  I think that's nonsense.  I am on meds and think about HIV as I swallow the pills 2x a day.  I think about it when I sit on the toilet as the diarrhea hits me (this is one of the major side effects for me.)  I think about HIV when I think about my husband who died of AIDS in 1989.  I think about HIV when I want to disclose my status, which is nearly everyday.  I think about HIV when I go to the doctor.  I think about it whenever something just doesn't feel right with my body -- is it the HIV meds, or just HIV fucking up my body?  It's on my mind when I talk to my family and close friends, all of whom know my status.  I think about it and talk about it when I am in therapy (on a regular basis now -- once a week, which helps tremendously.)  I think about HIV when I go to Planning Council meetings.  I think about HIV when I go to bed at night wondering if I will wake up NOT thinking about HIV, which I always end up thinking about every morning (thankfully, I awaken.)  I think about HIV everytime I come to these forums.  I think about all the people I knew who died from AIDS and wonder on a daily basis, "why am I still here?"

So, yes, of course I think about it on a daily basis.  To believe otherwise would do me a disservice.  Is this obsessive thinking?  Who knows... what I do know is that HIV is in me and I can't help but think about it.

For 11 years (from 1989 to 2000) I was in denial... I didn't want to talk about it and I cried myself to sleep every single night.  I tried my best to not think about HIV, but in reality I always had it in the back of my head and it scared the crap out of me.  I was drunk and high most of the time and refused treatment until I got sick in 2000.  Then I was forced to think about HIV and what I wanted to do with the rest of my life.  I decided to live and take the meds.  What choice did I have?  I decided my life is worth living and I must make the best of this situation.  Finally, I am doing just that.  But for me, if I were to say, "I don't really even think about HIV anymore," is preposterous and I feel that those who say they don't think about, are really doing just that -- thinking about it.  It takes alot of effort to not think about something...which in turn means that you are thinking about it.

I don't understand how you cannot think about it when it is a part of you.

Do I allow HIV to control me?  Absolutely not... (there was time that it did for 11 years -- which stifled me.)  Have I learned something from trying to "not" think about it for 11 years?  You bet your sweet ass...I learned it was time to accept HIV, and go on with my life.  IF that means thinking about HIV on a daily basis, so be it.  But I won't allow it to destroy me and my happiness.  I did that already and it cost me 11 years -- 11 years that I spent in oblivion, tears, fear and internally stigmatized.

Yes, I think about HIV everyday of my life.  I can't help it, it's there and will be with me until the day I die or we find a cure.  It's a part of me and I can't deny that anymore.  Denying it in the past nearly cost me my life and my sanity.  I accept HIV and will think about it everyday because it is in me, bottom line.

Trish
  (who is thinking about HIV right now.)
"People grow through experience if they meet life honestly and courageously. This is how character is buit."  Eleanor Roosevelt

Offline Dachshund

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #33 on: June 21, 2006, 11:40:51 AM »
I thought about it this morning when I was stuck on the crapper and missed a nine a.m. appt. I forgot my mantra....no appointments before ten a.m. Hal. Just when I think I have forgotten HIV, something shitty always happens.

I feel your pain Trish!

Peace,
Hal

Offline DCGuy511

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #34 on: June 21, 2006, 11:46:15 AM »
I have no OIs, OK counts, no meds, but yes I think about it everyday. I was in much better shape before HIV, had so much energy and stamnia. Mentally it is hard for me to not think of myself as tainted. Sorry not as uplifting as the others.  I'll get there someday.
Steve
Infected/Diagnosed Fall 2003
"No Man Is An Island" - J Donne

Offline jkinatl2

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #35 on: June 21, 2006, 11:52:15 AM »
I'll be honest. The original post seemed a little condescending to me. Am I being too sensitive?
"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 The Canuck

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #36 on: June 21, 2006, 11:57:04 AM »
Quote
I'll be honest. The original post seemed a little condescending to me. Am I being too sensitive?

Well..don't know if you are too sensitive but didn't take it as being condescending. To a certain extent we all have difference experiences with this bug, and somehow you'll reach both limits...on the good side as much as on the bad one...in the middle would fit the majority.

Best Regards,

The Canuck
(Who will be careful to what he says to Jonathan..the Canuck doesn't want to be flamed by him)  8)

Offline Moffie65

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #37 on: June 21, 2006, 12:25:41 PM »

I was diagnosed with HIV/AIDS in August 2005, CD4 at 11% but was never sick, can't even recall the last time I even had a cold...well over 5 years or more if I can recall and never had any OI's.   I started meds the day after I got my CD4/Viral load results in August.  I did not even think about wether or not I should take meds, I just did it.  The Sustiva was a little wierd for the first week.  I also take Truvada.  My CD4 %  over doubled in about 6 months and I feel normal again.   I do not think about HIV anymore, I consider myself normal and healthier than many people I know.   How many of you don't think about HIV very much any more and live or try to live life normally or better than you did before your diagnoses.


Like Jonathan, I read the above and my immediate thought was "WELL GOODY FOR YOU!!!" 

I was jerked back to 1983, and placed the author of this thread into that timeframe, and oooo doggie, I think the story would have been different.  I am so glad that you have not had any Opportunistic infections at only one year of diagnosis.  This means that you more than likely cought the disease early in its effects on your body.  I am also glad you haven't been sick in the last five years; and what does that have to do with HIV?  I am glad you didn't think about whether you should take the medications or not.  I hope your decision to start the medications so early in infection does not affect the way the virus affects your body 15 years down the road, and I also hope your heart, liver, speen, biliary tree, and all your internal organs that have to process this poison; last for the duration, without the virus mutating out of control. 

You may be retired from the United States Navy, but they certainly didn't teach you one detail about "Living with HIV" and thriving with it for a very long time.

Do I think about HIV?   Every day!  It is the only way that I keep it under control.

In Love and Curiosity.
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 jkinatl2

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #38 on: June 21, 2006, 12:46:53 PM »
The Canuck
(Who will be careful to what he says to Jonathan..the Canuck doesn't want to be flamed by him)  8)


Hey, I'll cut a bitch.

:P
"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 AlanBama

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #39 on: June 21, 2006, 02:42:04 PM »
I thought so too Jonathan, but I figured it was just me being overly sensitive.

I really am glad some people are doing so well, and I want to be happy for them.  It's just tough sometimes.
"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 Londonguy

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #40 on: June 21, 2006, 03:41:29 PM »
I don't think the original post was condescending.

Anyway for the first year I didn't really think about it.  I could go months without it crossing my mind; it's only since my numbers dwindled that I started thinking about it more.  No doubt when I start meds there'll be a daily reminder but on the whole I'm confident that it doesn't now, nor will it ever, consume me.

Offline TugaMan

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #41 on: June 21, 2006, 03:49:40 PM »
Well, I think all of us think about "it" daily. In my case, at least once a day, before going to bed, when I take my meds i remember that "it" is a part of me now.
I'm not obsessed about it. I have fun (or not) during the day just like before, but I can't forget that I'm HIV+. Can anyone? Right...

Offline Rob - Dublin

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #42 on: June 21, 2006, 04:07:05 PM »
I'm only 6 weeks into knowing and I think I WILL want to think about it every day forever and ever. Why, well to stay on top of it means being one step ahead of it all the time and if i'm not one step ahead of it, then it must be one step ahead of me, and im not going to let that happen easily.

Today is June 21st, the longest day of the year (just a little bit of useless info)

Rob
14 Dec 2005 Tested Neg
21 Jan 2006 Infected
09 May 2006 Tested Poz
29 May 2006 CD4 551  (33%) VL 21,000
10 July 2006 CD4 632  (34%) VL 24,500

......when i'm good, i'm very good - when i'm bad i'm even better......

Dream as if you will live forever - Live as if you will die today.....

Offline Jeff64

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #43 on: June 21, 2006, 04:08:35 PM »
Funny thing, I was moving some books and stuff back into my officethis morning and discovered this yellow folder.
It was the folder if information given to me upon my diagnosis.

In this folder are flyers and pamphlets regarding ADAP, counseling, etc.

Also in this folder was my diagnosis.
It is dated 9/16/04...that seems SO long ago.
So far I have been extremely lucky and nothing had gone wrong yet...no meds, either!

It says here at the bottom of the printout "HIV antibody DETECTED".

Talk about a freakout!

Jeff


Offline USNRET

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #44 on: June 21, 2006, 06:44:59 PM »
I just wanted to see how various people are dealing with HIV.  Thanks for all the responses.  I do think about HIV some but I don't dwell on it.  Life is too short.  I have too many things I want to do.   I seen to many children die of cancer and other diseases at such a young age.  I could never come to the term of having pitty for myself.  I personally think there are a lot of worse things to deal with in life than HIV.  The other rare disease I have is worse than HIV overall and I have been dealing with for over 8 years and I am kicking it's butt pretty good.  If I could give one disease it would NOT be the HIV.  Smile...move forward...give your time to someone else... and live!!!   

Offline LYFE

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #45 on: June 21, 2006, 10:58:25 PM »
http:// WELL I GUESS IM JUST NOT THERE YET IM NEWLY DIAGNOSED AND ITS STILL CONFUSING TO ME CONSIDERING MY PAST LIFE STYLE MAYBE THIS WEB CAN HELP ME GET OVER MY FEARS

Offline Life

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #46 on: June 21, 2006, 11:04:47 PM »
LYFE... Welcome to AIDSMEDS.  Start your own thread and introduce yourself..

Love

Offline Oceanbeach

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #47 on: June 22, 2006, 01:09:08 AM »
I think about it every time I take a hand full of pills, get my disability check, check my bank balance because the disability income does not come anywhere close to what I made at my job. I think about it every month when I do run out of money and have to live off extortionate interest rate credit cards.  I think about it every time I am in a meeting on HIV funding, treatment or care issues.  I think about it every time I look in the mirror and am reminded about the damage of Lypo, when I take a step, I think about it because of the pain of PN, every time I fall from foot drop.  I think about it every time I have an "unscheduled" bowel movement in a public place, in my home, at a friends house.  I have been to over 150 funerals and think about it every time a friend dies.  I think about it every time I log on to the forums and share the pain, the anguish, the humiliation, the isolation, the losses of the people here whom, I will never be able to meet in person but have grown to love and respect.  I think about it every time I pick up a newspaper or turn on the news and hear about funding shortages for programs which benefit all of us living with HIV.  Last night I was looking at the Epidemiology Report of a mid-Western state, found out there were only 2 ASO's in that state, their numbers reflect the same numbers of my county alone and wondering how these people get the needed services.  I am thinking about it right now because as well as you are doing this year, can change next year, or in three years of 5.  That is why I paid for, designed, wrote the copy and continuosly market my web site www.Commission-on-AIDS.org, because with you, me and the other 1.1 million people living with HIV/AIDS currently in our country and the 40,000 newly infected each year, we are going to need a lot more than we currently have just to keep living and the government is going to fight us tooth and nail for every needed service.  Have the best day
Michael

Horonable Discharge U.S. AIR FORCE 1974
« Last Edit: June 22, 2006, 01:13:19 AM by Sonomabeach »

Offline OakMax1

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #48 on: June 22, 2006, 03:17:42 AM »
Well guys after reading all your postings, I was amazed at some of your stories.
I think HIV everyday, even while riding the train to work.  I think about am I the only person on this train who is HIV+.  I start looking around at people saying no or yes in my mind as if I can guess that person status.... silly game but it help keep me sane!

Tonight I start my first dose of sustiva and truvada and boy what in store for me... I will never know... until in the morning :-)....  My world has changed forever and only for the best!

HIV is here to stay!
« Last Edit: June 22, 2006, 03:19:32 AM by OakMax1 »
Go with it and KEEP MOVIN!  Life is good today and I am glad to be here

Offline allopathicholistic

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Re: DON'T REALLY EVEN THINK ABOUT HIV ANYMORE, HOW MANY PEOPLE DO?
« Reply #49 on: June 22, 2006, 05:28:33 AM »
I am thinking about it right now because as well as you are doing this year, can change next year, or in three years of 5. 

true enough. y'know that's a good reminder for moi --and others i'm sure. hmmm, guess i do think about hiv beyond the stuff i said earlier. i do know when i eat i soemtimes think 'this is good healthy food, good for strength to fight anything bad' (i.e., physical ailments, hiv, etc.)

 


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