POZ Community Forums
Main Forums => Living With HIV => Topic started by: Matty the Damned on August 13, 2006, 10:28:20 am
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Brothers and Sisters,
I've decided that I will not be resuming Highly Active Anti Retroviral Therapy (HAART) in the near future. I can't do it. I loathe the pills and I will not take them.
I will of course continue being monitored on a regular basis. Well, pretty regular. If not regular, then from time to time.
As the need arises and all that.
MtD
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Hello Matty,
This is of course your choice and must be respect as such. However I'm assuming you'll take the plunge if your numbers gets bad, won't you ?
Regards,
The Canuck
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Matt,
Wishing you best with your numbers. Keep an eye on things.
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Matty,
This of course is your choice.................and everyones response to you will start with this exact statement.
I however can not for the life of me figure out why a young man, such as yourself, so full of life, spirit and candor would make the choice to not take meds to continue living and contributing to the wonderful life you now lead.
If you wait until you get sick and end up in the hospital and then make the choice to start meds, the recovery process will be difficult and arduous. Is it that you just want someone else to make the decision for you? Because if that is the case, taking the fucking meds! There, I made the decision. Yes, it sucks, yes the side effects have the potential of being debilitating...............but only for a while.
See, I'm selfish. I WANT YOU around for a really long damn time. I NEED YOU around for a really long damn time. Make the choice to continue living a full and productive life (as productive as you can possibly be). It's not like you have exhausted all that is out there and no longer have choices. You have SO MANY choices.........
Maybe it's just me, but I choose life...........and I choose YOU Matty.
Loving you right back.........
Lisa
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I personally think if this is the way you want to go then all power to you for making the choice. I have found that making the choice not to treat has been quite frowned upon by many positive people who know me, though interestingly not my doctor who after 15 years in charge of my HIV healthcare knows exactly where I'm coming from.
Since stopping all meds in October 2005 my health and wellbeing has been as good, if not better than when I was on treatment. Regardless of my numbers I go with how I'm feeling and don't feel at all pressured to reconsider my decision.
In terms of monitoring my doctor likes to see me every 10-12 weeks to check on my cd4/viral load count, I tend to stretch that to 12-14 weeks as there are no underlying problems so I'm not concerned to see what the numbers are doing.
Some people can continue living a full and healthy life without meds, it might last a few months or it might last years. It won't work for everyone but there are always people who are exceptions to the rules so what's to say it won't be you or me.
Best wishes,
Emma
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Well. Matty. From one Queen to another.....I say go for it. You know your body and if you keep in touch with your body you know what you need to do. Thankfully you have a host of wonderful support people here.
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Matty,
i must admit, i feel your choice..I'm just waiting for the last rug rat to leave the cage!
stay strong!!
lisbeth
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Matty, I am not sure what Alex would have to say about this (other than a bit of the old Ultra-Violance that is). But if you don't take care of yourself and you fall prey to something such as the dreaded bite of the Magato, I will be upset and have to kick you in the Yarbels if you have any Yarbels..
Just Sayin,
[attachment deleted by admin]
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If you wait until you get sick and end up in the hospital and then make the choice to start meds, the recovery process will be difficult and arduous. Is it that you just want someone else to make the decision for you? Because if that is the case, taking the fucking meds! There, I made the decision. Yes, it sucks, yes the side effects have the potential of being debilitating...............but only for a while.
Lisa
Hello Matty, it is Eldon. I can't beleive what I am hearing from you. However, it is your choice. Take Lisa's advice Matty, i'm right there with her.
Did You Know?
That the HIV virus reproduces itself from your T-cells? It is like a WILDFIRE when the virus is in it's multiplication reproduction stage. It tears you immune system down, and you need your immune system to fight off OI's.
You know about the HIV virus and what it can do. Why in the world would you not want to treat HIV?
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I don't remember what your labs were, but I suppose it doesn't matter. You know your body/virus better than anyone here, so it's a decision that we have no choice but to support. Do you have a stop-gap number, (tcell count or viral load), where you will restart treatment?
Good luck and stay well.
Cliff
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Matty
I just want to say that after this weekend of hysteria I've just been through( I'm still new at playing this game) I can see how easy it would be to just say, screw it all and just live whatever life is left and let God be in charge of the rest. If I wernt a single mom and still have a 9 year old son to raise it would be so easy...
The point I'm trying to make is this, some times people miss out on so much life while they are trying to live... Do what feels best for you honey, only you know what that is.
Hugs
Jena
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Matty,
Please reconsider your decision. Ok, Haart's side effects are rough , but Hiv harms a lot more if left uncontrolled. It's deleterious proteins will attack your gut, lungs and also your brain. Keeping the virions as low as possible is our only way to prevent or minimise those damages.
Jacques
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Gutsy decision Matty. Best of luck to ya!
BB
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Best of luck to ya!
Hugs
Teresa
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Good luck. I think the opposite way but respect your decision. I would only like to add that my friend Enrique has been HIV for the last 12 years. He is studying to become a nurse, is 36 y/o and has never been ill due to HIV. But he is on treatment since the very beginning. No side effects, no lipoatrophy...he looks healthy and happy.
On the other side my friend Felix had a count of 180 CD4 last November. He is not on meds and looks just as healthy as Enrique...
But my decision was to start meds today and I think I am doing the right thing.
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My Dear Matty,
I would like to give you my feelings here, but they are so "all over the place" about this decision you have made.
I realize that you have a life there in NSW, that few would envy, and living on the "dole" is not something that is terribly fun for someone who is driven, awake, and chomping at the bit to make a difference in this world. It is also somewhat repulsive to look at a future that doesn't ever include financial independence. I know as you survey your life, that one must weigh all the issues that make up our lives. Sometimes the future is bleak, and sometimes the future is bright, but unfortunately with all the trials and challenges that have been placed on your platter; there are not too many of the really bright spots to peer at. Given this scenario, I totally understand the depth and breadth of your decision. I must tell you, many of us here have worn your shoes, and to judge you for any decision you have made would just totally be wrong.
Please know that there is one very far off person, living in Arizona, that is in full support of any decision that you have, or will make. If you change your mind a dozen times, I will be here to support and uphold your decisions. If not, that is OK too.
I have come to love you in ways that I cannot explain, as this medium is so foreign to an old fart like myself. However, your words, thoughts, and emotions come across loud and clear here, and some of us have come to admire that sassy, bitchy, honorable, and wonderful man that lives in New South Wales, and we want nothing but the best for him.
In LOve and Total Support.
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My Dear Matty,
You know I am a staunch supporter of treatment before it becomes a life-and-death situation. I put off responding to your thread. I had to think about how I felt.
Part of me wants to shake you, tell you to take your meds Then I realized I was being selfish. I wanted you to do what I thought was best because I worry about you.
But this isn't about me. Its about you, what you decide to do with your life and how you choose to live it. Its about what makes sense for you and is totally your decision.
That said, please know I support you in your decision. As Tim said, even if you change you mind a dozen times, I will be there, right beside you.
You have given me so much, helped in so many ways. How could I do anything but lend you whatever support I can?
HUGS,
Mark
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You fucking die and I swear to god I will KILL you! You hear me! Good luck man. You must have a set of THESE
(http://www.fuzzyco.com/bare/nyif/Images/big/balls.jpg)
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Matty, you are wise. People get so obsessed with numbers and counts and stuff... but if YOU are not prepared to go on meds, truly and forever, no matter what, then you would be a fool to start.
Jonathan
(who has been a fool)
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Can't say I blame you. Everyone has different side effects on the poison. I know I was so sick of them in 99 I quit for three years after ten years. It will be good to feel normal again. Is it OK to use the word "normal"?
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Damn, Matty, you sure can throw up a thread. Nothing banal about going off meds -- it's the fucking third rail of living with HIV: touch it at your peril. So, small wonder that I thought about this for a couple of hours -- chime in, keep mouth shut, chime in, keep mouth shut -- guess which way I decided?
Each of us will eventually reach this decision point. Small wonder, since we are each infected with an incurable disease, the only medical intervention for which is a course of chemotherapy with side-effects that are arguably worse than the disease itself. Oh, and the treatment does not cure the illness, only makes it "manageable" if you take it for the rest of your life. The treatment is prohibitively expensive, making it unavailable to 80% of the people who need it, making you one of the lucky few. On top of this, a select few(ie pharmaceutical companies and medical researchers) are getting rich and famous off your misfortune. Did I miss anything?
Faced with this reality, it is a natural reaction to want to act up, to shed the yoke, to free oneself from such an untenable position. The meds are the natural target. The fear factor will keep most people compliant, but for some fear no longer does the trick. Just how long can one live under the sword of Damocles, before the damn sword doesn't matter any more? That was a rhetorical question.
I'm not going to validate or condemn your decision (you weren't looking for validation, were you?) because it is none of my business. I am also not going to point out the obvious (it's your decision...). So why did I bother to post? Simply to point out that if you go off meds, you will probably survive the experience. You will not see that anywhere else, I imagine, and it deserves to be mentioned.
How can I make such an outrageous statement? Very simply, HIV does not kill us. OIs kill us, and OIs, with very few exceptions, are treatable.
So why does this particular issue get so many knickers in a twist? When one of us goes off meds, it challenges the committment each of us has made to the course of treatment. But it really shouldn't. If you are taking HAART, it should be because YOU
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...damn space bar...
...have decided that is the right thing for you to do. It should not matter what anyone else does or does not do.
For my part, I went off meds after about five years on. I had my reasons. Stayed off for four years and was doing just fine until I ran out of Septra (had a back-alley connection) and came down with PCP
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...not gonna use the space bar no more...
I predict that you will be called upon to justify your decision repeatedly, for as long as you admit to it. My suggestion, work it for beer. Yes. Refuse to discuss the matter unless the listener is willing to pony up. Does wonders for stretching the budget!
You're on the dole? Me too. (Yes, the fucking lawyer is on the dole. What of it. Here we call it SSDI) Yet another unfortunate fact of life with HIV. Certainly no failure.
One last thing about going off meds. I found it very liberating, at least until I got sick again. But I bounced back. Do with that what you will.
Later,
J.R. (who is in fact a dickhead, but who, if he is to be relegated to the dock, will insist that it be tastefully decorated with large throw pillows, ambient music and soft lighting. We have standards, after all.)
ps figured out the keystroke snafu -- tab took me to post, space bar acted like enter key -- duh. J
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...damn space bar...
...have decided that is the right thing for you to do. It should not matter what anyone else does or does not do.
For my part, I went off meds after about five years on. I had my reasons. Stayed off for four years and was doing just fine until I ran out of Septra (had a back-alley connection) and came down with PCP
Maybe you should start a couple of polls. Should Matty take his meds? Will Matty die from an OI ? Well, at least we know that won't happen because according to you those pesky little OI's are easily treatable. Jeez, you make it sound so easy and inviting.
Your denialist bullshit is not going to fly. You will get your wish and inflame another thread...but don't expect Matty to accept your blessing. Knowing Matty as I do you can expect quite the opposite.
I wish you would have opted for keeping your mouth shut.
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Hey Matty,
How do you feel about your decision some days later? Please tell us how you are doing, how it feels to have made this choice.
I hope you stay well for a long time. I hope you have the strength to get treatment when you need it. I hope this works out well for you.
Hug
Coen
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All,
Forgive my late reply. I've been very busy over the last two or three days with various political matters. Fundraising and all the other fun stuff that has to be done in the time before two general elections (one for the NSW Parliament and the other for the Commonwealth Parliament) next year. I'm sure political activists from the US will understand given that you face mid-term Congressionals in November this year.
The lot of the unpaid Party official is not a happy one. ;)
As for the medication stuff, let me assure one and all that I have thought about this very carefully. Since December 2004 in fact. The fact is that I'm a bit HIV'ed out. At least regarding my own HIV stuff. I have compliance issues and they've never really gone away.
I just can't trust myself to take the pills properly at this time. I don't really want to. I don't want to see my specialist or my nurse or the social worker at the moment. Hell, I don't even want to see my GP. I'm tired of my blood tests and the inexorable diminishing results.
In addition to that, I just finished two years of major dental work in May this year. It's been all too clinical. Needles and examinations, Xrays and procedures, gloved fingers and gaping orifices.
Well ok, that last bit isn't so bad.
I'm tired of being told I have to take medication. Whether it's outright or implied. I'm a naturally contrary type. I don't have to do a fucking thing, if I don't want to.
I'm sick of hearing from prissy representatives of AIDS NGO's telling me how good things are these days and presenting papers on "exciting new developments" at events like that over-rated AIDS Industry circle-jerk that's going on in Toronto at the moment.
Superannuated windbags, the lot of 'em.
So, for the moment, I'm resolved on this course of action and I feel the better for it.
MtD
(Who has lost none of his vinegar) ;D
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Matty, I think for you this is probably the best decision. For you.
And for right now.
What's the point of taking medication that's supposed to keep you healthy if you're too miserable to enjoy the health? Now, honestly, I hope that you find it in yourself eventually to work through the issues you have with the meds to take them before you get seriously ill. And I hope nothing irreversible happens to you before that, but you know I'm here for you regardless.
Also, it's better to wait until you can be sure you'll be compliant and not risk resistance rather than be miserable, take meds, miss doses, wind up resistant to a billion things and be doomed in the end.
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Shit man, you know *I* dont care! As long as you keep ranting on and on about inane subjects I could care less if youre medicated! Go Get em ya big QUEEN!
Andrew
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Hi Matt:
Well, It's the first time I write to you. (I am kinda new here)...But I really wish you the best. May the force be with you!! :)
Me? I'll begin treatment next week. You quit, I begin...such is life...
GO FOR IT QUEEN!!!!!
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Matty, just do me a favor and keep an eye on the numbers and don't let them get to low on you. You can let all your boy friends go low on you, just don't let the numbers. You'll start when the time is right. I trust you and your decisions.
Roodles