POZ Community Forums
Main Forums => I Just Tested Poz => Topic started by: buginme2 on December 01, 2010, 08:03:58 pm
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So I dont feel as though I can post in the living with HIV section yet, since I was diagnosed just over 30 days ago. The overwhelming feeling of having HIV, and how it is so intrusive pushing to the front of my mind every minute of the day has subsided, just a bit. I now only think about it every other minute instead of every minute.
I'm not sure about these forums, they sometimes make me angry. I end up comparing myself to everyone on here. I read about someone else getting sick during seroconversion and I get angry that I didnt get so much as a sniffle that it took over 2 years for me to get diagnosed. I sometimes wish I had gotten sick so I could have found out earlier and started treatment earlier. I am sort of obsessed about treatment now. I havent started yet. Still waiting for the resistance test results and waiting for my second appointment with the hiv doc (next week).
Is that what this is going to be? Obsessions, about every ache I feel (it has to be HIV), what kind of medication I will take (what are its side effects?), will it work? whats the best meds to take? does someone else know im hiv+ Is my partner going to leave me because im + and hes not?
I hate to break the happiness of world aids day (by the way...happy world aids day), but this sucks!
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And another thing...I'm sorry for venting on here...but you are all strangers so its allowed, but why the hell is everyone so damn positive on here? (pun not intended) I dont want to be positive I want to be pissed off right now
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Yes it sucks having HIV, but we now have to deal with it.
I remember waking up in the night thinking it was only a bad dream, but it is the new reality.
When I ceroconverted I got SICK! It was not fun, but that just got me earlier labs.
My doctor wanted me on meeds but I opted not until a few more labs would be done.
After starting at 348 a few months ago, it has gotten better.
Don't freak out, look at your labs and think about your options.
It will get better!
Hugs,
Hoover
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Hey There Buginme..
It's going to be exactly what you make it out to be. If you dwell on every ache and pain then that's going to be your trip.
As I stated all over the place on this forum a hopeful and optimistic attitude goes a long way.
The meds are no big deal so you'll get over that too eventually. Really they are no big deal. Thank god we have em.
Okay man.... Take care and let me/us know about your results and the med you chose to take right away to halt this virus in its tracks.
Cheers...
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NYC, although I am sure your intentions are good. I will also say that as a relatively inexperienced person to living with HIV, it's presumptuous of you to categorize the issue of going on to and being on HIV meds as "no big deal."
The meds are in fact a very big deal. Choices about them and responses somatically to being on them are quite varied. While being encouraging to someone else is a good intention, I suggest you need to be more careful about your choice of words.
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Andy..
Compared to getting sick or letting ones cd4 drop below certain numbers where there is potentially irreparable damage then meds ARE no big deal.
I will take your note and as I have done else where caveat that by adding, after you and your doc have decided it's time to go on meds don't be afraid to take them. I will tell you, for me they have been no big deal.
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Andy..
Compared to getting sick or letting ones cd4 drop below certain numbers where there is potentially irreparable damage then meds ARE no big deal.
I will take your note and as I have done else where caveat that by adding, after you and your doc have decided it's time to go on meds don't be afraid to take them. I will tell you, for me they have been no big deal.
So we tend to gloss over the fact that Truvada which is standard in almost any firstline regimen for anyone taking HIV meds is in fact fairly tough on the kidneys. This drug is not old enough for anyone to know exactly what its long term effects may be. This is the case with a lot of the newer HIV drugs/regimens. So while, yes, going on meds is a better option than developing AIDS, being sick, or dying, the drugs are not in fact a panacea. Thinking of them in this fashion is not healthy. They will keep you alive, but there is a price. On this site that price is downplayed for the purposes of highlighting the benefits for the uninformed or those who need to start meds but are scared to because of side effects. Do not misinterpret me the meds are the better option, but to say that they are "No big deal" is disingenuous at best. The meds are a big deal, they are a burden to your body, they're just lightening the load of the hiv.
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Happy you are venting!
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Yeah, I get that here. You can over blow anything and accentuate anything. Medicines for many other ailments I suppose are probably not great for you. Heart medicines, diabetes's.. anyway the list goes on. Why is it the HIV drugs become this spooky thing that is so terrible. Get over it I say. I don't buy it. Aspirin can be bad for your kidney's. Viagra... I mean side effects are side effects. There are over 27 medicines for HIV. One of them will work for someone. How many illness's have over 27 drugs and more on the way? Ehh. As my young niece so appropriately says "Whatever".
Beer and bourbon long term is a burden to my body. (Kidney's, liver...) As is too much steak. (heart, arteries..) But what's the alternative?
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Hope, no one here is speaking against the use of the meds or with a lack of appreciation for the difference they have made and continue to make for so many. It's simply that making the decision and then living with it is definitely a serious matter.
Ultimately it seems to me in this matter and many others it's best to speak only for oneself and out of one's own experience.
Let's keep it light, friendly and non-dogmatic in this discussion because it does have a potential to heat up, something that has happened in the past.
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Nyc you are a glass half full kind of guy, i like that. You and I were diagnosed at about the same time and while I admire your optimism im not at that space yet. Maybe, hopefully soon. I dont think anyone including myself is promoting going without medication. In fact i most likely will start meds soon, i'm just waiting for my next appointment with Dr. However, i dont think its as simple as "take a pill and everything is ok". People still die of hiv every year. As for someone like myself who is newly diagnosed hearing a lot of people tell me "no one dies on meds anymore" and reading also thatthousands still die every year is a bit confusing amd a lot to handle. We cope differently. Sometimes we just need to vent, and being that i have only told one person im positive i did it here. Sorry for venting, but it does suck.
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Andy,
I agree and that is what I did in response to your last post. I clarified that for me, taking meds are no big deal.
I also will add, that I think from being here over a month and reading quite a bit, there is a strong unfounded stigma to taking meds. Say what you will, but it is presumptuous to think that this incessant accentuation on the side effects and seriousness of a life saving drug is somehow a good thing.
It is, on the other hand, seriously effecting a persons decision to even get tested in the first place let alone skewing the decisions of the newly diagnosed.
So mincing words when it has to do with life and death, health and repairable damage, is not something I do well.
I have the utmost respect for what you are saying and consider myself a guest here. But there is an overblown stigma perpetuated through out the community about meds that is simply not good. This all is coming from misinformation from the early days of meds.
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Nyc you are a glass half full kind of guy, i like that. You and I were diagnosed at about the same time and while I admire your optimism im not at that space yet. Maybe, hopefully soon. I dont think anyone including myself is promoting going without medication. In fact i most likely will start meds soon, i'm just waiting for my next appointment with Dr. However, i dont think its as simple as "take a pill and everything is ok". People still die of hiv every year. As for someone like myself who is newly diagnosed hearing a lot of people tell me "no one dies on meds anymore" and reading also thatthousands still die every year is a bit confusing amd a lot to handle. We cope differently. Sometimes we just need to vent, and being that i have only told one person im positive i did it here. Sorry for venting, but it does suck.
Not at all my man... Vent away. That's what this is all about.
Saying that thousands are dying every year is an inaccurate statement. There are many many mitigating circumstances that contribute to that. (please read ElZorro's article on my post in Research "another reaon to start treatment early) People are dying from many things every year.
On the flip side. I am not saying HIV is not serious. SO are many other diseases. It is, however pretty well the consensus in the medical community that people need to get tested early and (the obvious caveat) after consulting with their doc get onto meds.
The stigma of these spooky meds is preventing early detection and prventng people from getting on them.
Btw... that is some name you chose! Good luck buddy!
A glass half full is still half empty. I like to have my pint at least two thirds full. Especially with beer.
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Please see my reply in Living With.
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People still die of hiv every year. As for someone like myself who is newly diagnosed hearing a lot of people tell me "no one dies on meds anymore" and reading also that thousands still die every year is a bit confusing amd a lot to handle.
keep in mind, that nearly 1/3 of people who are diagnosed are diagnosed with HIV/AIDS when they present to the hospital quite ill. Some of those, who obviously have gone too long untested and untreated, do pass away. (my last partner passed away 69 days after entering the hospital and that was only 55 days after diagnosis of AIDS and non-Hodgkins lymphoma) Also every year people who have been struggling with HIV over the last 5-10-20 yrs continue to pass away from HIV-related problems.
The meds have quite literally been life-saving and life-sustaining; but as with all other diseases, life is a continuum, so people will continue to die of AIDS every year whether we have meds or not. Of course too, there is a percentage of people for whom even the meds are not the solution and they too pass away. Thankfully though, the meds have been effective enough to drastically reduce that yearly number from the epidemic rates in the late 80 thru early 90s
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Yes, leatherman...
btw- great posting about meds in another thread.
Life is a continuum.That is the best point. If ten thousand people a year in the US are dieing from aids related causes than that needs to be less of course. Though that number against how many people have HIV/AIDS and new infections it is a pretty impressive number.
People die from many things. I do think it is presumptious to assume the because one has HIV and takes meds that either the meds or the HIV will kill them!
1/3 of people not getting diagnosed in time sucks period. It is my fear that the stigmas about meds and the virus period is causing that.
Well.... like your post you tough SOB
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Hope,
As Andy said. Let's definitely try to keep this light. I think it's great that you want to focus on the positive, but I'd ask that you also try to be respectful of what the original poster expressed, which is anger and upset at his situation.
I've watched your posts and you sometimes tread a very, very fine line between optimism and minimizing the very real consequences of HIV infection and the shortcomings of the meds. The problem isn't simply stigma or fear of the meds. There really ARE shortcomings. It's awesome to celebrate how wonderful the meds are, especially given the short time that has passed since the virus was discovered, but they are not perfect, nor are they completely free of side effects--both short and long term. To express this is not to be bitter or misguided, or to try and rain on anyone's parade. It's just the simple truth, in black and white, in study after study.
For many people, living with HIV is very much a "big deal," and that's one of the main purposes of this forum, to help people bond with others going through the same issues and to find understanding and compassion. It's not about dwelling on the negative, or staying silent when you're own experience can offer hope to others, but as Andy says, it's important to stay rooted in your own experience, and to express your opinions as coming solely from that experience.
-David
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So we tend to gloss over the fact that Truvada which is standard in almost any firstline regimen for anyone taking HIV meds is in fact fairly tough on the kidneys.
Word. Just ask my kidneys.
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Word. Just ask my kidneys.
Dayummm.
Nobody ever talks to my kidneys. :D
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This thread has bounced all over the place but back to being angry and frustrated about being HIV positive...
I have also been really angry lately also. I especially got angry the week before the last ID doctor visit. I guess it's the fear of the unknown. I also think: thinking myself to death keeps me from feeling the obvious stuff that I don't want to feel. Feeling angry is easier than crying or being depressed. I havn't cried over being positive but I have certainly been depressed.
A few things that I have done that makes me feel a little better is going for walks or watching a movie. Sometimes just listening to music gets me out of my head and I don't think too much. Over time, the frustrated feelings get better. I saw my ID doc this week and I feel better knowing I am starting meds Sunday. (deep sigh!) At least I know something. At least I have a plan. I am in no way ready to be in a relationship or start something new. I'm not sure I want to have sex. No-one seems very attractive to me right now and I'm sure that is also part of being angry.
Another thing that has helped is making friends with a few people here and exchanging email addresses and chatting on more of a personal level. I have found several people to be very supported outside of this forum. And the people in this forum are supportive as well.
Hoping the best for you.
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I hate to break the happiness of world aids day (by the way...happy world aids day), but this sucks!
Yup! It absolutely, friggin' does :-\
Vent away, brother. That at least let's you get something out of your system.
I'm not sure it's an "upside", but at least we have access to effective drugs to help control it and the current research is very promising albeit quite some distance from bringing a viable cure to market. One of the things I think is important is to ensure that we each have a relationship with an experienced and compassionate ID doctor with whom we can hold frank and honest discussions about what we're experiencing. If that type of a relationship can be established, we can work together to help keep this and what may come down the road under control. Early on, my ID staff told me we were going to approach it like a football team and I was going to be the quarterback. They were there to provide all the support and coaching but it was ultimately up to me to make the calls.
The meds are pretty remarkable, but they do present some risks that aren't necessarily concerns with the meds that treat other diseases. I'm not a doctor (and have never played one on TV), but I think we need to remember that the "program" is meds under "constant monitoring". I'm guessing that the constant and persistant monitoring has a lot to do with the fact that collateral damage is a definite possibillity and the relative newness of the drugs that are being prescribed.
I'm taking them and will continue to take them, but I have my days when I wish I had the courage of some others who have been infected much longer and have not started meds. I'll never really know whether I absolutely had to start when I started, but I'm not going to second guess myself. I'm going to remain optimistic that science will continue to amaze us and that, even if a cure doesn't come around in the next 10-15 years, another viable method of treatment will and it will be as effective and less toxic.
Vent some more, Bug! Let it out so that you can figure out what your next move should be! ;)
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Thanks Y'all. The drama of it all. You know?
So I had an appointment today with the local ASO. It was our, "get to know you" meeting and discuss all the programs and services that are available to "People Like Us." I will say, PLU (people like us) do have quite a few services available to them. Anyway, I was "ok" going into the meeting however, once we actually sat down and started talking, I broke down. I was a mess.
So big deal for me. I met the ASO person at my doctors office. I'm too ashamed to actually go to an "aids group" or the "aids building." I know its really crass of me. But the thought of me walking to the aids organization building really sucks. We basically agreed that counselling is a good option at this point and they have therapists that specialize in HIV (obviously), but I cant get myself into the thought of actually going. Actually walking into the AIDS group building and going. I know its stupid. I dont have a problem going to the doctors office and everyone there knows why I am there but going to AIDS organizations is really kind of freightening.
So.I 'm not going for counseling...Not yet at least.
So im in a holding pattern, waiting to see the Dr. next week, will start meds then most likely. Just trying to get by. Day by Day.
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I had a chance to attend a support group meeting a few times when I was diagnosed last summer. It wasn't specifically for PLU (I like that better than pozzie; can I use it? ;)), but, rather, for people with chronic illnesses. It was actually pretty helpful and I wish I could still attend. Unfortunately, it was at 10:30 a.m. and some of us have to work :P
The group was led by a psychologist and was pretty therapeutic. The first couple of times, I just sat there and listened to people and was a "fly on the wall" (it was a small group, maybe about 10 people). About the third meeting, I opened up and let a bunch of stuff out and broke down a little. It felt good to vocallize all the fears and anxieties that were running through my mind. It was cool because people didn't offer a lot of advice, but they listened to what I rambled about and let me get it out there. I think that's part of the treatment process...just getting "it" out. I wish I could go back again, but my current work schedule won't support it.
Another "plus" about that particular group was, although there were a lot of PLU, there were others with much much worse illnesses who were only attending the group in order to face their imminent death. I remember one man a bit older than I who was legally blind and confined to a wheelchair and was barely hanging on. He talked at length one day about how great his life had been and how he felt like he was "ready to move on" and he was so absolutely upbeat and cheerful about all the good that was in life and advising everyone to make each day count.
Then, despite how absolutely "awful" his situation was, he started to comment on how bad he felt for those of us with HIV who were having to deal with people who didn't understand the disease and wanted to stay as far away as possible and that he imagined it must be a very difficult situation to deal with. I remember thnking that it was so unselfish that this man, who was so much worse than I, could express such compassion despite his circumstances. It was a very profound experience.
I think talking helps..even if it's a one way conversation where the other person is just listening and doesn't feel obligated to provide any answers.
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Do either of you have insurance with a mental health rider that allows you to see a therapist in a private setting?
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Ya Miss P, I do have insurance, and it has pretty good mental health benefits. Just a $15 copay. And actually I went to a therapist a few years ago, so I do know of one. The ASO lady today recommended theirs becuase they "specialize" in it and my old therapist may not have the special training they go through.
I've thought about a support group. But havent actually gone. Funny thing is once I actually get the nerve to go I wont be newly diagnosed anymore and wont probably need to go anyway.
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While a therapist who has worked with other HIV patients can be helpful, really any good therapist should work, as the large majority have at one time or other dealt with a patient with a life threatening diagnosis. That's really the angle, not the particular disease (with the exception of increased social stigma particular to HIV, but they still should be able to handle a discussion of this... professionals and all that).
I totally understand that one month into your diagnosis you're not ready to go somewhere that has obvious connections with HIV, so I suggested the private doctor as a way to go around this, at least for now. I think you'll get over this fear after talking it out with a therapist, and in time you'll be able to feel comfortable with these other options. The bottom line is that leaving this unresolved will only allow it to fester and grow larger and harder to deal with.
I hope you will consider my suggestion, and wish you well with whatever you choose.
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So I dont feel as though I can post in the living with HIV section yet, since I was diagnosed just over 30 days ago. The overwhelming feeling of having HIV, and how it is so intrusive pushing to the front of my mind every minute of the day has subsided, just a bit. I now only think about it every other minute instead of every minute.
I'm not sure about these forums, they sometimes make me angry. I end up comparing myself to everyone on here. I read about someone else getting sick during seroconversion and I get angry that I didnt get so much as a sniffle that it took over 2 years for me to get diagnosed. I sometimes wish I had gotten sick so I could have found out earlier and started treatment earlier. I am sort of obsessed about treatment now. I havent started yet. Still waiting for the resistance test results and waiting for my second appointment with the hiv doc (next week).
Is that what this is going to be? Obsessions, about every ache I feel (it has to be HIV), what kind of medication I will take (what are its side effects?), will it work? whats the best meds to take? does someone else know im hiv+ Is my partner going to leave me because im + and hes not?
I hate to break the happiness of world aids day (by the way...happy world aids day), but this sucks!
Hey Bug,
I'm sorry you are having such a difficult time right now and I suggest that you simply give yourself permission to feel, whatever it is you feel. I still remember when I tested poz and my head was spinning for months. All the questions, thoughts and emotions I experienced, they were simply overwhelming. The sad reality is that you are poz and you are just beginning a journey to accepting your status. While I cannot tell you what type of journey you will have, for right now, I ask that you simply allow yourself to feel. The things about emotions, is they are neither right nor wrong, they just are. Just because you think of something, does not have to mean anything, other than your need to feel those emotions.
I believe it is normal and healthy to be angry about becoming poz, because it is a life altering event. Not only have we contracted a potentially fatal disease, but we are also saddled with the stigma of our disease, the demands it makes on us and our lives and the effect it has on those who love us. That being said, I encourage you to redirect your thoughts right now and just take it one day at a time. Be kind to yourself and that means in mind, body and spirit. Learn something every day, as that will feed your mind. Practice good health habits, as that will feed your body. Most importantly, do something everyday that you truly enjoy, because that will feed your spirit.
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Thank You
:)
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A poz guy told me when I found my status. Is better stop living in the past and looking forward, we are poz so that we can't change,so don't waste ur time in the worse past. Use ur energy on what you can do from now...I been poz for 4 months and I belive myself and think I doing well. You can do it too.