By isolating I mean just the feeling that my life is limited. That I can't tell many people for fear of how they will react.
Wow, how long have you been hiv+?
After living with HIV/AIDS for 24 years, officially diagnosed with AIDS in 1996, and then having to retire in 1999 from a promising career because of illness, I am mad I have it, but got to live with it and deal with it. Fortunately most of my life living with HIV/ AIDS have been good. Most of the glaring illnesses are occurring now perhaps due to the virus, meds, where I live, my age, who knows. But I've accepted I had AIDS a long time ago, and living with that stigma is the least of my problems. It's dealing with the health issues that go along with it, med side effects, skin conditions, kidney issues, and everything else that gets me down being a long termer.
If you have been recently diagnosed, or are pretty much doing well health wise, get out there and enjoy yourself. Don't worry about what other people think. Take advantage of your health while you have it and don't isolate if possible. Believe me, things can get a lot worse.
Don't mean to preach, but hope this helps.
Best,
JM
I feel you Wow. I just got home from the local casino. I was sitting at a table today with a micro-biologist and he was going on and on about all of the advances that are being made for diabetics and all of the exciting things that are on the horizon and I wanted to ask, "So what about HIV???" :P But, I didn't, because I felt like it would become obvious to everyone at the table.
Thanks .. My partner just got home with a bag of chocolate :-)
Mood elevators are here ...
Wow, isn't it more like just over two years? In your first ever post here in July 2008 you said you were diagnosed three weeks earlier.
I guess I'm lucky in that I only experienced those kind of feelings in the first months after my diagnosis. I'm very out about my status and I just don't feel isolated at all. On the contrary, I feel rather liberated and well-connected to others, probably more so than before diagnosis. I don't really feel limited either, I just do what I want and get on with it.
I feel you Wow. I just got home from the local casino. I was sitting at a table today with a micro-biologist and he was going on and on about all of the advances that are being made for diabetics and all of the exciting things that are on the horizon and I wanted to ask, "So what about HIV???" :P But, I didn't, because I felt like it would become obvious to everyone at the table.
I have several days where I feel just great and wonder how it is possible I have this virus--because I feel so good. Then, I'll start feeling down about it. It is usually triggered by not feeling very good. I'll go out with friends and family and not think about HIV for awhile, but usually not longer than an hour. I find myself comparing myself to all of them. I do feel isolated that I'm the only one of my group with this virus. They have no idea what it is like. I still don't know all about what it is like, and I hope I don't get to know everything. Well, the bad stuff anyway. Anyway, I'll feel jealous of them that they don't have to worry about this virus that is trying to kill all of us.
I wish I had that life back. I'm getting tired of dealing with this on a daily basis. I get tired of being afraid to make plans for Christmas to go to Florida. Everyone is suppose to go, but I have this fear that I will get sick with something while down there and ruin their vacation. We just went to the IN State Fair. There was a story on the news about someone who petted an animal and then went into kidney failure from some bacteria or something. It made me wonder whether it was safe for me to go into the animal barns. I'm tired of thinking that way. I know much of this is irrational, but ya never know especially not being on meds yet. I continue to work on it and try to stay hopeful. Fear is the big challenge for me to overcome.
Wow, isn't it more like just over two years? In your first ever post here in July 2008 you said you were diagnosed three weeks earlier.
I guess I'm lucky in that I only experienced those kind of feelings in the first months after my diagnosis. I'm very out about my status and I just don't feel isolated at all. On the contrary, I feel rather liberated and well-connected to others, probably more so than before diagnosis. I don't really feel limited either, I just do what I want and get on with it.
Hey,
I went through that when I first tested positive. I fealt a strong urge to talk about it, but kept it in. I haven't told my family yet and have only told a few of my friends.
HIV isn't a nice disease like cancer. Most of us can blame getting this disease on a bad decision that we made. It also carries such a high stigma here in the states. I wish I could say something to make all of this easier for you, but I can't. You have to find your own way through it and find peace.
I tested positive and was put on meds right away (47 t-cells). In the first few months I had to force myself to take the meds. Only people with HIV had to take those pills. In a way it a bit of denial for me. I didn't want to take the pills. I didn't want to be positive. I didn't want to have AIDS. Fact of the matter though is this is what my life has in store for me whether I like it or not.
I think having 47 t-cells was a good thing for me in the long run. I remember friends who passed from AIDS and knew how desperate my situation was. It caused me to confront death, accept it, and start to enjoy life again. You have to confront the worst case scenario, come to peace with it, and enjoy and cultivate the best life that you can.
HIV or no HIV, we are all going to die. The question is, how are you going to live?
I hope I didn't sound too preachy. I just feel for your situation.
By isolating I mean just the feeling that my life is limited. That I can't tell many people for fear of how they will react. How I'm not as free as I was before.why do you feel the need to tell most people? ??? I went to an amusement park yesterday with my youngest brother, his wife and kids. We ran around all day, riding the rides (my oh my. at 48 now, all that spinning is a little nauseating; but it's oh so much fun!), eating (mmm chili-cheese fries!), and playing in the water park. Not once did anyone talk about HIV :D
I think that it's different for women than for men and probably more so for gay men ... There is an attitude that we did something to deserve this ... That we have HIV for reasons beyond just an accident ... The social stigma is one of the things I find difficult at times ...lordy, you would have never made it coming out in the 70s or early 80s in the South then. :D ;D Half the reason I don't pay any attention to the "stigma" about HIV is I got passed the stigma of all those cute rednecks boys calling me a fag. ROFL If you can come out to your Baptist parents and get through the ribbing of the rednecks, a little aids-phobia ain't nothing. ;)
I had to start meds about 3 months ago. It's kinda made me realize that I have it. Before, I could just go one with my day. Now, I have a daily reminder.Are you having health issues or side effects issues because of HIV or the meds? ??? If not, what's the big deal? Tons of people in America live on medications for all sort of problems. Watch TV for a few hours, see all those med commercials? well there's are tons of people popping those pills today. I'm just glad I don't have to inject myself a couple times a day like someone with diabetes. It can't be all that much fun trying to figure out how to carry syringes around with you at an amusement park. LOL
I had to start meds about 3 months ago. It's kinda made me realize that I have it. Before, I could just go one with my day. Now, I have a daily reminder. Yes, my health is fine, other than taking meds.
I guess not all that many people have had my experience of seroconverting and also starting HAART within months. That was all so terrifying, maybe it makes sense only for me that HAART would be a relief, not constant reminder. Maybe I share this with LTS however, who finally after years felt better and got their life and future back with HAART.I'd bet nearly 90% of any trip to the doc results in a prescription to be filled, no matter what the initial complaint was. :D I'll just never get why people have such a time being conflicted about the meds.
Shit!!
I would have been like what about HIV?...my umm...? brother has it...sister..would you believe my uncle?! lol
I worry about planning for my future ... I keep thinking things like "Why go back to school and finish my PhD?" etc ... The fear of not having insurance is terrifying to me ...
You know, there are days when being POZ feels freaking isolating. Worse, it also feels limiting. As in my future has been severely limited on levels I never realized before.
Just having one of the down moments.
Your eloquence always leaves me speechless. I hope you publish your memoirs some time soon.
Back to Wow: you's gon be alright.
Your eloquence always leaves me speechless. I hope you publish your memoirs some time soon.
I'm sure we'll see Bryan's autobiography when he finds a pen fine enough to write on the back of a postage stamp.
MtD
What's he gonna do with all the blank space when he's finished?
What's he gonna do with all the blank space when he's finished?
Are all positive people bitches are just the ones with a low cd4 count and a high viral load ?
;D
Are all positive people bitches are just the ones with a low cd4 count and a high viral load ?I know quite a few unfortunate souls, who have low CD4 counts and high viral loads and they are anything but bitches. You have a lot to learn and you may want to start by respecting those, who have survived with this disease. You seem to think this is a game, where you can disparage others and I assure you, that very few members are playing. Your comments are hurtful and deliberate and that is insulting to both the intent and members who frequent these forums.
;D
Are all positive people bitches are just the ones with a low cd4 count and a high viral load ?
;D
1 = why do you feel the need to tell most people? ???
2 = how often do you think your status needs to be brought up in the course of your job, your education, or with your friends and family? ???
3 = I'm living at my Mom's house and we haven't talked about me being poz in like weeks and weeks. It didn't come up with the chiropractor at this week's appt.
4 = In actuality though, I really am "out" about my status. No, I don't run around telling everyone I see about it; but when the subject comes up I don't have any fears about talking about it.
5 = really, the only limits in your life are the limits that you put on it and the limits that you allows others to put on you. ;) so buck up, and move ahead with your life. Figure out what you want to do now, to make your future bright and comfortable - and then go do it! ;) ;D
Maybe I am the only freak who feels that starting HAART made it all seem so much better. I've had my problems with the HAART but it also intellectually reassured me that I'm here for the long haul and can't alter much my life plans having seroconverted.
Isn't it possible that you can rethink your emotional reaction to HAART to put it in positive, affirming, securing, light?
I'm sorry to hear you are feeling down and I know how hard it is, to adjust to being poz, but ultimately, what other choice do you have? I say this, because I have been living with HIV for 26 years and while we cannot eradicate the HIV, we can control the toll that it takes on us. What I find useful, especially when I feel isolated or stressed, is to ask "What is the worse thing that can happen?". Asking that question, causes me to pause and really think about what the real issue involves. Many times, the answer is "nothing major", but its the pause that counts, because it breaks my train of thought and frustration. For me, it's like a mental slap upside the head. If nothing else, it brings perspective to my emotions.
I caution you against allowing your past to dictate your future. Lamenting the past, prevents you from enjoying today, when today is all that we have. I hope you can find peace and realize that you are worthy of whatever life you choose, but only you can turn your dreams into reality.
I'd bet nearly 90% of any trip to the doc results in a prescription to be filled, no matter what the initial complaint was. :D I'll just never get why people have such a time being conflicted about the meds.
Nothing makes you feel happier about taking the meds (even something crappy like AZT, 4 every 4 hrs 7 days a wk resulting in anemia and puking) than when you're lying in a hospital, after the docs have pumped you full of antibiotics, and told you that you're still probably gonna die of PCP. That's when they hand you some pills and say "take these quick and pray that they work in time, so you don't die". :o
My meds, even when they were rashing me out, causing me to fall down staircases and lose my job from the dizziness, and puking EVERY damn day for months on end, have always been my friends :-* cause even the worst of those meds has contributed to me being alive today and healthier than ever nearly 20 yrs later. ;)
You don't want to wake up 20 years from now and have an ounce of regret.
One thought that I always have is this, If I get hit by a bus tomorrow, and HIV will have been an irrelevant part of my life, will I have any regrets in my final moments? I know it's not that cheery, but it helps me to keep things in perspective.
The HAART just made things a little too real for me .. That's all
Gee Leather ... thanks for the encouraging words ... So let me get this right? Because you have dealt with it that makes anyone elses battles unimportant? ... Just because you don't understand it or because you can't remember what those days were like because it all happened to you 20 years ago doesn't make what use relative newbies feel any less important ..sorry you mistook everything I wrote. I didn't write about my problems to minimize yours. I wrote about mine to put yours into perspective. Lots of people have lots of problems. You can either let them all drag you down or you can rise above them with hard work and patience.
You must believe that you will live a long and happy life and to plan your life accordingly. You must believe that you are a good, decent person, who just happens to have HIV. You control your thoughts, words and deeds and I urge you to never surrender those rights. If you have faith in yourself, that what you are doing will make you feel whole, then that is what you must do... because that is all that matters here, making you whole.
I find reading the posts in this forum and listening to what others are experiencing (and have experienced) is a significant help to my being able to cope.I'm sorry you couldn't understand from my posts that the a positive attitude, like I used to overcome many of my problems and related to you by my experiences, is the goal you need to strive for to overcome your issues. I'm sorry that you can't understand my points that if other people have been able to get through the same issues you talked about (and even worse things), that you could too if you worked on it, changed your attitude towards the things you have no control over (like someone else's prejudism), and had patience to get through the bad times.
I can appreciate that. I hadn't shed a single tear over being infected until the day my Dr. handed me the prescription for Atripla. Something about having to (deciding to) start HAART made it real for me too and I broke down like a child.
Now, though, I think I'm doing much better. From time to time I feel a "flash of rage" for allowing this to happen, but it is what it is. While the drugs are definitely helping against the virus, I find reading the posts in this forum and listening to what others are experiencing (and have experienced) is a significant help to my being able to cope.
Also, I remain optimistic that the scientific community is going to find a viable alternative to HAART in the not to distant future.
I can appreciate that. I hadn't shed a single tear over being infected until the day my Dr. handed me the prescription for Atripla. Something about having to (deciding to) start HAART made it real for me too and I broke down like a child.
Now, though, I think I'm doing much better. From time to time I feel a "flash of rage" for allowing this to happen, but it is what it is. While the drugs are definitely helping against the virus, I find reading the posts in this forum and listening to what others are experiencing (and have experienced) is a significant help to my being able to cope.
Also, I remain optimistic that the scientific community is going to find a viable alternative to HAART in the not to distant future.
I was just reading an article here on poz.com about PTSD. It talks about many factors, but starting HAART was an unexpected and big factor. What you said about starting meds made me think about this article--not saying you have PTSD, but rather it made me think of the article. I found this very interesting:
Theuninck and his colleagues stated that receiving HIV treatment was both “the strongest predictor and an unexpected finding. The emotional distress evoked by receiving treatment was more highly correlated with [post-traumatic stress symptoms] than any other stressor.”
If you haven't read it, you can read the entire article here:
http://aidsmeds.com/articles/hiv_pstd_stress_1667_18966.shtml
Indeed. For me, not yet on meds, going to the clinic to get blood drawn every three months is a powerful reminder that I have HIV. During the couple of weeks between that event and then going to see my doctor and find out the result, HIV is dramatically present in my life. The rest of the time, I tend to half forget about it.
I can easily imagine that after starting meds, there might be a period during which just taking the pill or pills every day would be a powerful and unpleasant reminder. But I would hope that after a while that would go away; taking that pill would just become part of the routine and I wouldn't think about it much. I hope that happens for you, soon!
I have a friend who got diabetes not long ago. She has to do something--prick her finger and find out her blood sugar level, I think--several times a day. She said--this was still early on--that she did it most of the time, but sometimes she deliberately refrained from doing it. She said that every time she did it, it was as if a voice was screaming at her: "you are a diabetic!" "you have diabetes!" and that, in order to escape that voice, she sometimes just avoided the finger prick.
I wonder if something similar could explain some non-adherence to meds on the part of some people with HIV. Of course the stakes are vastly different. I don't think that pricking your finger twice a day instead of three times would have anything like the consequences for a diabetic which skipping meds would have for someone with HIV. But the psychology might be the same.
Anyway, that's a step towards an attempt to figure out why "the emotional distress evoked by receiving treatment was more highly correlated with [post-traumatic stress symptoms] than any other stressor.”
You know, there are days when being POZ feels freaking isolating. Worse, it also feels limiting. As in my future has been severely limited on levels I never realized before.
Just having one of the down moments.
Are all positive people bitches are just the ones with a low cd4 count and a high viral load ?Now did your really expect not one POZ person to say some thing to you about this statement you made. Yeah you are correct a lot of POZ folks are bitches when it comes to certain things in life! Well hey it pumps up the energy and keeps us going. We do not want to just wallow away in a corner and die. SO we fight with our mouths and here we get to spew our anger as well as our bitchiness! I would not call any one on here bitchy because I only know them from here and I do not post much, yet I read alot of them. So in what right would I have to call some one from NYC bitchy when I only know their words and not them humanly as well as personally!
;D