POZ Community Forums
Meds, Mind, Body & Benefits => Mental Health & HIV => Topic started by: Pricho01 on September 01, 2012, 06:16:10 am
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And....hello... just interested to know if starting medication for HIV made it more real for you? As in ok so I really do have a virus that could kill me without some pretty radical therapy...
Now my mind jumps ahead to Lypodystrophy, bone density probs..... all the things that were in the future are here and NOW... I can see the benefits i.e. I get to live....it's just with everything else in life its more of a psychological shock than I thought it would be.
For me at the moment this kinda sucks the big one.....it's kinda like getting the diagnosis again...(?) Am I off-track here?? Sharing some of your stories for dealing with starting meds would be helpful if you feel up for it.... Phil :)
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In short...no.
HIV became real when the doctor told me I am HIV positive and when I went to pick up my labs and actually could see that there were some small buggers in my blood.
The meds was a non issue for me, sure I felt the side effects but it wasn't such a big deal.
After the diagnosis my mind started to adapt and work around this big life changing event and as time went by the meds and HIV just became the new norm, listen to the doc, talk to the great folks over here and yeah, that's about it. I also did some other changes in my life to better my health (food,drinking,drugs,exercise) that I should have been doing as HIV- as well but it never would've happen without a big smack in the face , and that smack happened to come in the form of a virus. It made me wake up.
Life is ever changing and so is HIV.
What helps me, is to think that HIV is in a very fast moving area of research, every day thousands of scientists and doctors go to work to improve the lives (clinical trials,studies,meds development etc etc) of HIV + people. It is reasonable to believe that many of your worries might never occur or if so, there will be skills, knowledge and meds when you need it.
I havent been + that long but this is my thinking, thanks for reading.
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Hey Pricho,
I can relate to what you are saying. When I popped my first pills almost a year ago only three months after diagnosis, it was the first tangible " thing " I was doing that drove the reality home. It was a mind bender for sure. I wondered if would ever feel routine; folks say it is like brushing your teeth.
I am not quite there yet, but as time moves along, it does get better. One thing that has helped me is a bit of reframing - the pills are not a burden, curse or negative thing, they are soldiers that are keeping the virus the loser. Each time I pop them, I dwell for a quick moment in gratitude that I have them, they are paid for, there will be more and most especially for the thousands of lives that were experimented on so that I have what I have.
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nope. lying in a hospital with doctors telling me I was about to die of PCP made AIDS real for me ;) A similar situation happens to approx. 1/3 of the people diagnosed as HIV positive. That's how many people find out in the hospital and don't have the "luxury" of debating when or waiting to go onto meds. For us the meds don't make it "real", the meds keep us from dying. The meds are a life-saver.
Considering how many people take daily medications for all sorts of health problems, it seems silly to let HIV stigma make you think disparagingly of the meds. I mean instead of 1 pill a day or so, you could be having to test your blood with a prick and injecting yourself with insulin at every meal! You could be on daily heart meds, having to have your blood checked every week.
Also worrying about side-effects is pretty silly too, as package insert information on the meds clearly shows that short term issues (like dizziness and nausea) happen 10% and less of the time and long term effects (like the ones you listed) usually happen less than 5%. So if at least 90% of most patients don't even have any short or long term effects (and those are pretty damned good odds) why bother worrying about something that probably won't happen?
I've been on meds for 20 yrs now. From AZT, 4 pills every 4 hours every day every week puking the whole time and ending up in the hospital for a blood transfusion from anemia to my current regimen of Reyataz/norvir/Truvada which (after some initial gastro issues) now has no side effects for 8 yrs and has me feeling healthier than I did in all the other decades of HIV meds. I'll tell you what, I would have loved started taking meds in 2012 compared to 1992. ;)
besides in the end the equation is pretty simple:
no meds = HIV becomes AIDS = death
Compared to that, meds don't look bad at all, now do they? ;) :D
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And....hello... just interested to know if starting medication for HIV made it more real for you? As in ok so I really do have a virus that could kill me without some pretty radical therapy...
Now my mind jumps ahead to Lypodystrophy, bone density probs..... all the things that were in the future are here and NOW... I can see the benefits i.e. I get to live....it's just with everything else in life its more of a psychological shock than I thought it would be.
For me at the moment this kinda sucks the big one.....it's kinda like getting the diagnosis again...(?) Am I off-track here?? Sharing some of your stories for dealing with starting meds would be helpful if you feel up for it.... Phil :)
No. Not at all. I was HIV+ just a few months and wasn't doing so well. Going on HAART returned things to a new normal that made HIV seem far less dramatic both immediately and looking to the future.
Also, I'm not someone who worries about side effects from HAART. The one's I have experienced were eventually solved by the doctors or time.
I don't understand your illogical idea that all future POTENTIAL side effects of medication are suddenly present. If you don't have them now, you don't have them now. They are not present. Please stop projecting dark clouds everytime you take a pill. Figure out a a way for it to be completely mundane, like a morning coffee.
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nope. lying in a hospital with doctors telling me I was about to die of PCP made AIDS real for me ;) A similar situation happens to approx. 1/3 of the people diagnosed as HIV positive. That's how many people find out in the hospital and don't have the "luxury" of debating when or waiting to go onto meds. For us the meds don't make it "real", the meds keep us from dying. The meds are a life-saver.
Considering how many people take daily medications for all sorts of health problems, it seems silly to let HIV stigma make you think disparagingly of the meds. I mean instead of 1 pill a day or so, you could be having to test your blood with a prick and injecting yourself with insulin at every meal! You could be on daily heart meds, having to have your blood checked every week.
Also worrying about side-effects is pretty silly too, as package insert information on the meds clearly shows that short term issues (like dizziness and nausea) happen 10% and less of the time and long term effects (like the ones you listed) usually happen less than 5%. So if at least 90% of most patients don't even have any short or long term effects (and those are pretty damned good odds) why bother worrying about something that probably won't happen?
I've been on meds for 20 yrs now. From AZT, 4 pills every 4 hours every day every week puking the whole time and ending up in the hospital for a blood transfusion from anemia to my current regimen of Reyataz/norvir/Truvada which (after some initial gastro issues) now has no side effects for 8 yrs and has me feeling healthier than I did in all the other decades of HIV meds. I'll tell you what, I would have loved started taking meds in 2012 compared to 1992. ;)
besides in the end the equation is pretty simple:
no meds = HIV becomes AIDS = death
Compared to that, meds don't look bad at all, now do they? ;) :D
Same here. HIV became real when I almost died from pneumonia. The pills are not a hassle to me at all...I used to take that Animal Pak stuff for building up muscle, it was 12 pills a day...huuuuge pills, by the way.
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Did starting medication make HIV "real" for you?
No. Being in the hospital with pneumonia and AIDS ~~CD4 8 VL 500,000~~ made it real. Taking meds was never an option.
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For me I knew I had HIV (2005) but it was a 3 monthly test and everything was ok T Cells fine Viral L reasonable - and yes I suppose that the timing for starting medication was a "luxury", and the decision was mine to make.... so I can see different circumstances lead to different outcomes....
I can appreciate lying in bed with say PCP and being given meds to make you better would be a great thing, so I get that guys...and thanks for your replies...
I will try to "stop projecting dark clouds" and I suppose my depression and anxiety gets the better of me! Trying to focus on the now, but I think to be honest I got really good at forgetting as best I could I had HIV cause I had no symptoms if that makes sense...
Blah blah - Im crapping on here.... this has just been my experience - thanks for the replies though - helps shift the mind! ;)
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In some metaphysical way you will be less infected when you are on HAART because there won't be nearly as much HIV in you! Its fine you were able to put being HIV+ in a box for many years, and you'll see in a few months its just moving the condition from one box to another, with different advantages.
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HIV was real for me before I was even diagnosed, the first time I saw a man covered in KS lesions walking down the street. But hey, you new folks don't ever see any of that these days.
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Exactly Miss P..... I have discovered there is a dividing line between those who were diagnosed early on and those more recently.... its like there's been a sea change... so maybe for the more recently diagnosed issues will be different? Interesting....
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In some metaphysical way you will be less infected when you are on HAART because there won't be nearly as much HIV in you! Its fine you were able to put being HIV+ in a box for many years, and you'll see in a few months its just moving the condition from one box to another, with different advantages.
LOVE!! Thx....
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Exactly Miss P..... I have discovered there is a dividing line between those who were diagnosed early on and those more recently.... its like there's been a sea change... so maybe for the more recently diagnosed issues will be different? Interesting....
But I get your point Pricho...the meds do make it more "real"....disclosing to someone close to you has the same effect BTW
I do feel a lot better knowing that taking some pills during breakfast will keep me stress-free and keep that damn little monster in a "sleeping state" so that I can live my life the best way I can.
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But I get your point Pricho...the meds do make it more "real"....disclosing to someone close to you has the same effect BTW
I do feel a lot better knowing that taking some pills during breakfast will keep me stress-free and keep that damn little monster in a "sleeping state" so that I can live my life the best way I can.
Thanks Rockin - now I just need to find that "someone" to disclose to :-* cheers
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The first time you disclose to a sexual partner that you have HIV is WILDLY more intrusive than taking a handful of pills with a glass of water. There is no comparison.
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The first time you disclose to a sexual partner that you have HIV is WILDLY more intrusive than taking a handful of pills with a glass of water. There is no comparison.
I have been there and disclosed before.... it is harder than taking a handful of pills with a glass of water Miss P...the dividing line for me and this topic is the psychological one of living in a world so different from the one you mentioned earlier...
HIV was real for me before I was even diagnosed, the first time I saw a man covered in KS lesions walking down the street. But hey, you new folks don't ever see any of that these days.
times have moved on and obviously improved dramatically since medication was not an option (back in the day). I suppose to close the loop this has demonstrated to me that we cannot stay stagnant... that we have to embrace new ideas (even if we don't like them) and learn to see things from new perspectives... it's been great to hear from both the old and the new....
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For me Yes.. I was diag 1987 in April at young age.20.. I remember being told I wouldnt make it to 25.I then decided to go get my life together and I did.
I worked I re knitted relationships with my family..
It wasnt until 10 yrs later that I was told I had 2 go onto Meds..
That was when it hit home for me..
I am here 25+ yrs later ...
Never been in hospital due to HIV either I been extremely lucky I guess
I think it differs with every person and their own personal experience..
Just use the best out of every day :)
Good luck
K
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For me Yes.. I was diag 1987 in April at young age.20.. I remember being told I wouldnt make it to 25.I then decided to go get my life together and I did.
I worked I re knitted relationships with my family..
It wasnt until 10 yrs later that I was told I had 2 go onto Meds..
That was when it hit home for me..
I am here 25+ yrs later ...
Never been in hospital due to HIV either I been extremely lucky I guess
I think it differs with every person and their own personal experience..
Just use the best out of every day :)
Good luck
K
Thanks Kris..... you got me....
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In my case, HIV makes real as soon as I had my positive WB back... Because my first Elisa was undetermined (one positive and one negative in me same sample) and because I had Mononucleosis (diagnosed) one year before, I thought it could be false positive... I received it very strongly and decided to make some adjustment to my life, without waiting...
Starting meds has brought me a lot of tranquility, I wanted to start early, at CD 4 = 500 but it has not been possible... And also, it has been difficult to access to med because of some bureaucratic complication here, but I´m really happy to have them now and to be able to control the virus.
BTW, I have very little adjustment to my life to do because of HIV, I was eating properly, avoiding tobacco and alcohol and doing exercise. Maybe that could be difficult was to start controlling stress (I had a very hard year last year) and sleeping early...
I decided that HIV won´t manage my life and won´t affect me to fullfill my dream, but it has been a process...
Medicines are for me the greatest thing that exist, I´ve been a little stressed when I started them because I was thinking short term side effects would be worst and got prepared for that, really, starting treatment has taken anxiety away from me...
And sure, it is great to have time to deal with this, definitively it is not the same discovering you have HIV, having an oportunist desease and having to start directly that being diagnosized early... For that also I feel really lucky...
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Yeah, kinda.
But losing about 30 lbs, having night sweats, my hair begin to fall out and my skin begin to come off in sheets did it first.
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Not me. My wife was further along when I was diagnosed. Concentrating on her ART allowed me some distraction.
For me, it was the TB and PCP and weighing less than my wife. Night sweats, rashes, vomiting, diarrhea, headaches, pain...full blown AIDS made it real for me.
Looking back, this was a good thing. Yes, I would do anything to avoid those two years of my life; they were terrible. But I never miss my meds because no matter what happens in my life, that is not the way to go out. The experience has caused me to take great care with my ART adherence. And now I think I am reaping the benefits; I almost broke 600 a few months ago. I never though I would come back so strong; I thought I would be hovering around the 200 line forever: that is now way to live.
Taking the pills sucks; I hate the side effects and they sometimes drive me crazy. But it sure as shit beats the alternative!
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But I never miss my meds because no matter what happens in my life, that is not the way to go out. The experience has caused me to take great care with my ART adherence. And now I think I am reaping the benefits; I almost broke 600 a few months ago. I never though I would come back so strong; I thought I would be hovering around the 200 line forever: that is now way to live.
Taking the pills sucks; I hate the side effects and they sometimes drive me crazy. But it sure as shit beats the alternative!
Thx JessieJames I def don't wanna go out "like that"! And good to hear about your CD4 count! Phil
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The first time you disclose to a sexual partner that you have HIV is WILDLY more intrusive than taking a handful of pills with a glass of water. There is no comparison.
Agreed....Taking meds doesn't make it any more real for me....I've taken so many supplements and vitamins over the years that 3 more pills a day doesn't really matter to me....but disclosing to others and actually talking about it face to face with others for the first time makes it real for me....
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it did, and does, still, on bad days.
i guess when there's no daily 'reminder' it's easy to 'forget', and almost pretend you're fine. never the best strategy, but you can just go about your daily business and tell yourself everything is fine...until you end up in hospital!
for me taking the meds was almost an admission, as well as a reminder, that my life is now well and truly out of my hands. that someone else gets to do the tests that say i need meds, someone gets to decide, more or less, when i start and what meds i take. and that my own body is feeding the very thing that's killing me. it not so much made it real as it hammered 'you're dying' home to me. ironic, i know, that the thing that was saving me was the thing that reminded me the most that i was 'dying'. sopped and started taking them so many times i can't remember. back on them now. the feeling's not as strong any more, but it's still there. some days more than others.
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...and almost pretend you're fine....
...for me taking the meds was almost an admission, as well as a reminder, that my life is now well and truly out of my hands. that someone else gets to do the tests that say i need meds, someone gets to decide, more or less, when i start and what meds i take. ....
it not so much made it real as it hammered 'you're dying' home to me. ironic, i know, that the thing that was saving me was the thing that reminded me the most that i was 'dying'.
are you speaking with any sort of a counselor about any of this? I ask because it seems you really need to reverse everything you're thinking about the meds. The way you phrased things seems to be a really negative viewpoint that probably doesn't allow you to enjoy each day that you're healthy and alive. Taking meds really should be a happy, life-affirming action. ;) :D
without the meds, you truly won't be "fine". Living, as you're dying, with AIDS is a miserable experience
with the meds, you don't have to pretend, you will be "fine" and usually pretty "normal"
without the meds, you're not being pro-active about your health; you're just allowing HIV to ravage your body and mind.
with the meds, you are in charge of your life and medical care, and you are making the decisions
without the meds, your life is being stolen away by a horrible life-ending disease.
with the meds, you are finally not "dying" because with your renewed health you are able to live life to the fullest
Twenty-five years ago without meds of any kind, I watched so many of my friends die while I got sicker and sicker and came very close to death. Twenty-five years later with all the meds available on the market, I'm still alive and I see new patients go from near death back to life and right back to their "normal" lives of work, friends, and loves. There's just no way I could ever look at these life-saving medications as the reminder of death, as you imply; but as the only way so many of us have been able to beat back this scourge. I hope one day you can look at your meds with a happier attitude. ;)
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are you speaking with any sort of a counselor about any of this? I ask because it seems you really need to reverse everything you're thinking about the meds. The way you phrased things seems to be a really negative viewpoint that probably doesn't allow you to enjoy each day that you're healthy and alive. Taking meds really should be a happy, life-affirming action. ;) :D
without the meds, you truly won't be "fine". Living, as you're dying, with AIDS is a miserable experience
with the meds, you don't have to pretend, you will be "fine" and usually pretty "normal"
without the meds, you're not being pro-active about your health; you're just allowing HIV to ravage your body and mind.
with the meds, you are in charge of your life and medical care, and you are making the decisions
without the meds, your life is being stolen away by a horrible life-ending disease.
with the meds, you are finally not "dying" because with your renewed health you are able to live life to the fullest
Twenty-five years ago without meds of any kind, I watched so many of my friends die while I got sicker and sicker and came very close to death. Twenty-five years later with all the meds available on the market, I'm still alive and I see new patients go from near death back to life and right back to their "normal" lives of work, friends, and loves. There's just no way I could ever look at these life-saving medications as the reminder of death, as you imply; but as the only way so many of us have been able to beat back this scourge. I hope one day you can look at your meds with a happier attitude. ;)
i hear you, man. all you say makes intellectual sense. i know that they keep me alive, and more than that they allow me to enjoy that live without all the things that came with HIV not too far ago. i know that. just sees to be a disconnect with he brain and the 'heart', or spirit, if you will.
i've been back on the meds a week now. wouldn't say i'm thankful and OK with it but y mindset had changed. it's still akin to indifference, on good days, at the moment but i'm getting there. no choice. one of the very strange things that seems to have happened is that since i got back on the with a 'better' mindset I've had next to no side-effects at all. used to all sorts back in the day. nothing really now. that's helped with how i view the but wonder if how i viewed the caused the really bad side-effect to begin with. or made them worse, at least. a psychosomatic type of thing.
i'm working on it, man. but it still does make the disease 'real' every tie i take the meds.
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but wonder if how i viewed the caused the really bad side-effect to begin with. or made them worse, at least. a psychosomatic type of thing.
don't ever discount the psychosomatic effects!! ;) especially if the meds have ever caused you any bad side effects.
After taking liquid norvir for yrs, and barfing from it all the time, just touching the norvir gelcaps could often send me racing to the bathroom. That's when I realized the power of what I simply thought about the meds could actually result in a physical response.
Now 18 or 19 yrs after that first liquid norvir, there are nights when, just as I put the norvir tablet into my mouth, I'll shiver really hard and have a wave of nausea wash over me even though norvir causes ZERO side effects in me these days. But I try NOT to think about it, try to pop the pill really fast and wash it down with food and drink as quick as I can.
so keep working on it, just like I do every night, and think HAPPY thoughts. ;)
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For me, HIV definitely became more real when I was put on medications. When I didn't have to take meds, I didn't have to "deal" with the fact that I was positive, I could "forget" about it for a while, but taking meds made me realize, I have a virus that is changing my life.