Advertisement
The Body: The Complete HIV/AIDS Resource
Follow Us Follow Us on Facebook Follow Us on Twitter Download Our App
Professionals >> Visit The Body PROThe Body en Espanol

HIV Life >> Living With HIV

Pages: 1 | 2 | (show all)
Lovinlife
Fanatic

Reged: 08/29/08
Posts: 63
Success and happiness are NOT allowed
      #241810 - 09/04/08 10:35 AM

I previously tried to put up a post asking people to share anything positive or good that is going on in their life. I think it's just as important to see as the posts about people's struggles.

I got shot down in a very mean fashion for my post.

If as HIV positive we are not allowing each other to share our successes, what sort of support group is this? What kind of network is this?

I showed my post and the responses to my doctor who has been encouraging me to get more involved with support groups or online forums. We were both disappointed and, frankly, appalled that I was skewered for trying to share my successes and some ways I use to manage HIV.

I never intended to push my lifestyle onto anybody else. But, my doctors often tells me they wish i would share more of what i do with others who are pos because it could be helpful.

apparently the offer falls on deaf ears.

I have had my share of hard times. I just wanted to share some of the good times.

Post Extras: Remind Me!   Notify Moderator  
Florida69
Legend

Reged: 02/19/07
Posts: 541
Re: Success and happiness are NOT allowed new
      #241812 - 09/04/08 10:58 AM

We have all suffered hard times, I guess a better way to start would have been a introduction, let us get to know you and we of course would do the same. I have found in these online forums that once you put yourself out there without any indication as to who you are, that it is hard to see past the negative. We have had so many people before you that have come pushing snake oils, meditation, vitamins and life style changes. I am sure that is how your initial post was perceived, I thought the same things as the responders to your post. However, I continued to read your response and it gave me the opportunity to see who you are, and perhaps understand why you initially posted your information. Success and happiness are allowed, but you have to remember that there are people dying from this virus. We are happy that you are successful and happy living with HIV, but success and happiness have different measurements for different people. What you consider successful may be perceived as preachy, that is just my single solitary opinion. We all have struggles and do things, like yourself, that work best for us. Success I guess would be like me finding out my status and finishing my college education and graduating in the top five of my class. My point is that there are different measurements to success, and yours could be being successful in life, love and family. Take care, D

Post Extras: Remind Me!   Notify Moderator  
Lovinlife
Fanatic

Reged: 08/29/08
Posts: 63
Re: Success and happiness are NOT allowed new
      #241813 - 09/04/08 11:53 AM

So....all-in-all I take away from this experience that when it is called an "Open forum" that is, in reality, not the case.

I have to apply to some sort of clique, wait for a get-to-know you period, share my tears, trials, tribulations, failed relationships to then qualify to share my positive experiences and respond to others thoughts.

Suck it.

To all of you.

Suck it.

Post Extras: Remind Me!   Notify Moderator  
Lovinlife
Fanatic

Reged: 08/29/08
Posts: 63
Re: Success and happiness are NOT allowed new
      #241814 - 09/04/08 11:58 AM

furthermore--i never suggested anybody take any particular vitamins or do anything.

We've all been told--my doctors included--that taking care of your body helps fight the disease. I am in a women's study and my doctors always say they wish more women would try to be more hopeful and take better care of their immune system to help manage the tough parts of the disease.

That isn't a random person pushing snakeskin oil. DOCTORS say that.

According to several people here on the forum, trying to find happiness in hope in some of the gloom that is this disease is preachy.

Sick.



Post Extras: Remind Me!   Notify Moderator  
Florida69
Legend

Reged: 02/19/07
Posts: 541
Re: Success and happiness are NOT allowed new
      #241820 - 09/04/08 03:37 PM

Well, I will gladly suck it, but you first. I gave you the benefit of the doubt and now I see you lack the real intelligence to have a conversation with adults, responding by suck it, is childish and lacks substance. I don't have any of the things you described tears, trials, tribulations, failed relationships, in fact I am well adjusted. You are the one wanted us to accept you on the forums, and honestly until I know who you are I am not willing to share who I am, in short I don’t know you, and I am okay with that, and my life is still complete without you in it. I shared with you perhaps why you got a negative response, and you continue to post in negative manner. So I guess things are not all roses and sunshine as you are trying to portray, otherwise your doctor would not have suggested that you post in an online forum or find a support group. You should try Aidsmeds.com; see what type of welcome you get there. Good luck being accepted for you.. D

Edited by Florida69 (09/04/08 04:32 PM)

Post Extras: Remind Me!   Notify Moderator  
AIDS2HIV
Unregistered

Post deleted by Becky new
      #241826 - 09/04/08 11:35 PM



Post Extras: Remind Me!   Notify Moderator  
risred1
Newbie

Reged: 09/04/08
Posts: 1
Re: Success and happiness are NOT allowed new
      #241828 - 09/05/08 12:00 AM

I've gone through similar experiences on other boards so a word of advice.

Don't take those who disagree with you personally. They may be vitriolic in this response, but there are those who do understand what you are saying.

By making any statement about survivability, manageability, or criticize the outmoded AIDS = DEATH view that prevention believe is effective, is often to stimulate accusations of heretic.

Even though doctors are saying the words managable, for many, its simply doesn't seem that way. And it doesn't matter how you say it, or how you profess to understand, or how well thought out and balanced your statements are, there are those who will vent on such opinions.

Personally, I fully agree in principle with your statements.

1) AIDS = DEATH is outmoded and needs to be revised. It simply is not that current status of those infected in the last few years who seek and can maintain treatment appropriately. Yes, AIDS did equal death at one time, and those who have gone through that aren't and shouldn't let us forget what has happened. But there is also a denial about this message changing with the times. Beccause it is an afront for those who weren't lucky enough to be around today.

But as a prevention strategy, it is seriously flawed. I encourage folks to think back to the anti drug lessons we learned in the 70's. (for those who can remember those times.) We were told that LSD would make you jump out a window and that pot made you crazy and would turn you into any number of things. All it took was one person to figure out the message was a lie to essentially turn on the whole class.

This little allegory illustrates that the use of AIDS=DEATH in light of current published studies showing nearly normal life span is clearly in conflict with this message. Once the message is no longer true, how effective a strategy can it be. Its like teaching abstinence only. You can ask the Republican VP candidate if that message works too...

2) As to not letting HIV get you down or get in your way. Well, all you have to say is Majic Johnson, and you'll get a whole slew of negative comments about how Magic has a whole bunch of money, and that we essentially hate him for that, or can't take an once of inspiration from a celebrity who is out front about his HIV. Doesn't matter how you say, I'm happy regardless of my status, folks that aren't simply aren't. And you can't expect them to accept a message of I'm ok, feeling good, working out, adapting to my HIV without resentment being thrust upon you.

You can't fix that with commentary in a forum. This I have learned the hard way as you are now. Its not there are folks like you and me out there, sharing this positive attitude is not welcome essentially on a forum where folks come to complain about their difficulty living with HIV. That the forum is there outlet for their grief, fears, concerns, and very real problems with HIV.

Many folks are on salvage therapy. Many folks have resistence issues. Many folks are just not feeling very good, either from HIV or the OI's or the PN or the side effects. I certainly respect folks who are not having a positive time with HIV, but not all things can be cured with positive thinking.

I also made the mistake of putting my 2 cents in a mental health forum where i was direct and honest in encouraging a person to seek professional help. That a forum can only provide a sympathetic response, that this person would be best served by seeking consul with someone who could provide the correct therapy for their condition.

Boy was i considered out of step. I learned that there is nothing that can't be commiserated with in a forum, that forums are the best place to seek sympathy and support, which i don't think one should confuse with therapy, but none the less, one shouldn't say what one might actually think is the right thing to do. Because it is simply out of step with the community the forum often serves.

Now, I'm sure this type of commentary will draw fire. But as an experienced forum participant who lost sleep over responses to what I though was a well thought out, helpful posting, I've learned to not take these responses personally.

What I try to do now is simply educate when there is a question that i can answer. That's a good way to be helpful without drawing fire based upon ones out of sync beliefs.

Essentially, those of us who are adjusted and relatively happy, who do exist, simply are. And those who are not doing so well, simply are not. Saying so, does little to enlighten those who are not.

At least in my out of sync opinion.

Post Extras: Remind Me!   Notify Moderator  
August69
All Star

Reged: 03/22/08
Posts: 79
Re: Success and happiness are NOT allowed new
      #241829 - 09/05/08 12:22 AM

It is true that sometimes the comments will seem negative, but that is when people need help the most, when things are going well, they are out there living their life, not sitting on the computer looking for support

I understand the forum is to be used to share stories of success as well as difficulties. I know I have found some strength from some of the positive stories, also hope and a broader perspective on the disease. When I first came here I felt kinda lost, but have come to realize that a lot of people are in the same boat, going through the same difficulties, and appear to be on the same path of treatment. Encouraging that there are other people out there who can relate.

I know when I make the decision to start eating healthier, exercising more, etc, there have been other people in the same situation who have overcome their difficulties.

People are all at different areas in their life, some are still having difficulties, some are having extreme success. Thats only human.

I found your posts to be helpful, please do not let a few negative comments stop you.

I must admit that I am very shy, and sometimes feel my opinion does not count so I do not post as often as I would have liked.

Please do not give up.

Post Extras: Remind Me!   Notify Moderator  
cunta_stalwart
Grand Master

Reged: 06/27/08
Posts: 175
Re: Success and happiness are NOT allowed new
      #241837 - 09/05/08 09:02 AM

florida99, may I just say that this is the type of personal attack with people on here that is in my opinion in public view - unacceptable, quote "see you lack the real intelligence to have a conversation with adults"

You have in the past attacked me in a similare manner and I found it quite intimidating, there are several others hare who use the same tactics when faced with someone that either lives a different life or has different views to you, by your admission you seem to have had a very easy time with "Living with HIV" well I got news for you not all of us are so lucky either with the dissease itself or living socially, it presents many challenges for everyone and they are all different, please try to understand that and respond accordingly, this is a public forum for everyone to express their thoughts share their experiences etc etc, we can reply and help or support those people especially if we have experienced the same, at the moment all I can see from you that shares anything with anyone here is the fact that you are HIV+ it does not give you the right to criticise others because they are experienceing something different to you, as I have said many times in response to you and a few others here, WE ARE ALL DIFFERENT the challenges that we face are different and that can be due to many things - sexual orientation - race - where we live - male female - single married - the list goes on, I am not having a dig at you as such I just giving you my thoughts on how we should all present ourselves on this public support forum. Some people here have made me very angry in the past - it shouldn't happen.


And for all others posting here, it has been my experience so far here that there is a small click of people here who (for want of a better word) gang up and collectively pick on unsuspecting individuals to try and bully people.

Lets keep this forum a place for support and understanding and it you don't or can't understand then just leave it at that.

sorry for the spelling - too lazy to go back and correct

--------------------
How Many Roads Must A Man Walk Down Before He Admits Hes lost

Post Extras: Remind Me!   Notify Moderator  
RevAnn
Guru

Reged: 08/17/06
Posts: 245
Loc: fort myers, florida
Re: Success and happiness are NOT allowed new
      #241839 - 09/05/08 09:55 AM

The pots calling the kettles black! That is what I am seeing. How is it you (cunta and loving) are allowed to express your thoughts but if someone disagrees with you then we are attacking you? Strange how there is a double standard here. This is a forum that we are allowed to post how we feel and what we think. If you post something here then be prepared, not everyone thinks like you do and we are free to express it, after all, it is an OPEN forum. I do not personally attack the poster, just thier words and how they say them. If you take what I say personally then you may have issues that you may need to deal with. I am open minded but as I will say again and again, I look and talk about reality. I agree that my reality may be different from yours, but I am still allowed to write about it.
For the record, you both have verbaly attacked people here because they don't agree with you. As long as you do so most of us will defend ourselves, especially when you do it in an open forum. You are more than welcome to pm me directly if you have a problem with me. However as long as you keep this going in the forums, well....
Now to the title of this thread....
NOONE said that success and happiness are not allowed. It goes to show that people only read what they want. I encourge people to reach for thier dreams and if because of HIV/AIDS they have to change their goals, then I tell people to find something that they love to do and go for it. I will also tell them that it takes time. Nothing happens over night and nothing is handed to anyone. Besides, happiness comes from inside ourselves, it is not external.

Namu-myoho-renge-kyo to you,
Ann

--------------------
Namu-Myoho-Renge-Kyo

Post Extras: Remind Me!   Notify Moderator  
Florida69
Legend

Reged: 02/19/07
Posts: 541
Re: Success and happiness are NOT allowed new
      #241840 - 09/05/08 10:11 AM

Strong sailor, or as your name implies, I am responding to your attack. Frankly, I am not ever the one to take it from you or any else. When a person responds in a childish way with the simple term suck it! That leaves me to believe they lack substance and that is almost, in my opinion like saying your mama, and honestly I outgrew that in grade school. Since this post, she and I have found some common ground, and started a dialogue all our own, you should join in. I am not now nor will I ever tolerate demeaning responses from anyone, including you. If you want to have intelligible dialogue I am open, but to continue to whine because I do not agree with your responses in a forum that is for all people “Living with HIV,” with saying you attacked me, then grow a set. This particular person is angry that no one really agrees with her positive thinking that having HIV is not considered to be a death sentence thinking, which is their prerogative to have an opinion. You start by posting on a public forum, and instead of telling people who you are and why you are posting; it is like the blind leading the blind. I never said I was lucky with the disease or that I had an easy time; you should take some time and get to know me, and read my past posts on this forum and my struggles in coming to terms with myself and HIV. Some of the folks you consider to be in the clique have been people that I have had issues with in the past, and continued to get to know. I am lucky they are in my life. I am “Living With HIV.” I have HIV it does not have me. Instead you want us all to kiss your feet, and to me that too is demeaning. I feel bad that you have HIV, but it is not my fault I never infected you, in fact I do everything I can to not infect those that I am intimate with. If you are trying to find common ground, then start with why you are posting, let us know why you are struggling, or why you are happy. We are not able to read your mind. None of us are lucky to be infected by this disease, nor did I say that. Your life has changed, in order to move on you have to accept that, and perhaps you will find a better social group. I feel bad that you do not feel socially accepted, and how can I help you change that, unfortunately, I can not, that is on you. You are not the forum police or maybe you should tell on me, we are all individuals and deal with things differently. I am not criticizing anyone, frankly I am a busy person with a full life and friends, and don’t have the time nor patience to walk you to the exit. However, I am not going to let people come here and think they can walk all over the veterans and people who take time out of their lives to reach out to new comers. I do think you are taking a dig at me, and since you use the works “you” throughout your post, I am taking it personally. Anger, is an emotion that we all have to go through in coming to terms with ourselves and your new HIV status. There is no clique, we are all here for support, and some of us have been lucky enough to come before you, and the people who you are making offensive gestures against are the ones who reached out and helped me, and like you none of us took it lightly. They are reaching out to you, and you continue gesture them to step aside, and that is okay. When you are past the anger stage, we will all still be here and I am confident that we will be all willing to help you move on. I have been where you are, and two years and nine months later, I am moving forward, just like you will do. Good luck, D

Post Extras: Remind Me!   Notify Moderator  
Florida69
Legend

Reged: 02/19/07
Posts: 541
Re: Success and happiness are NOT allowed new
      #241841 - 09/05/08 10:14 AM

You go sister friend.... I love you bunches... D

Post Extras: Remind Me!   Notify Moderator  
cunta_stalwart
Grand Master

Reged: 06/27/08
Posts: 175
Re: Success and happiness are NOT allowed new
      #241842 - 09/05/08 10:22 AM

The pots calling the kettles black! That is what I am seeing. How is it you (cunta and loving) are allowed to express your thoughts but if someone disagrees with you then we are attacking you

That is simply not the case, as I have always said here time and time again - it is not about expressing your thoughts, I have always advocated that - it is about insulting peoples intlligence (having a dig) on an open forum, it has happened to me several times, when are you people going to realise that sharing experiences and expressing opininions should not include any form of personal attack or slander just because you don't agree.

It's a shame that I have to say this but it really is very simple - rely to a thread, express that you diagree, explain where you disagree and simply leave it at that, cut out the personal insults and comments because they are neither required or accepted here, I have always tried to adhere to this simple guide until someone either insults me or degrades my opinions or a discussion that I have started, then I have when pushed to the limit retaliated. Read my posts very carefully you will find this to be true.

there is no place on this forum for slander insults or demeaning comments. If they happen then they just defeat the whole purpose of this site, topics just degrade to personal insults as we have seen right here again, and may I say it is the ame people that continually degrade these topics, yes I have been part of that but I certainly wasn't the instigator I merely end up trying to defend myself.

Also what I have noticed here - several people seem to interpret someones post into something completely different, I have again stressed several times - read the words take them literally and stop putting your own interpretation on them.

No I have managed to post both these replies without insulting anyone merely pointing out some thoughts about this forum and how I think people should behave, if you dissagree with anything I have said then say so but do not resort to peronal insult degredation or any other type of slander to make your point................I hope you understand


PS I don't care if you are gay hetro married single or whatever, I do care about helping and shareing the experiences that day to day life throws my way ""living with HIV"" each of us are individuals and we need to respect the fact that we are all different and face different challenges, read my signature, that just about sums it up

--------------------
How Many Roads Must A Man Walk Down Before He Admits Hes lost

Post Extras: Remind Me!   Notify Moderator  
AIDS2HIV
Unregistered

Post deleted by Becky new
      #241843 - 09/05/08 10:42 AM



Post Extras: Remind Me!   Notify Moderator  
cunta_stalwart
Grand Master

Reged: 06/27/08
Posts: 175
Re: Success and happiness are NOT allowed new
      #241844 - 09/05/08 10:52 AM

lol

So how is everybody doing, can we have a nice pleasant discussion

My situation is improving from a very poor outlook indeed and bad news after bad news finally my outlook is improving and my body seems to be responding to the medication I've been taking now for several weeks CD4 up from mid 100's to 300's and VL UD from 220k and only after 6 weeks of treatment, other things in my life are also getting better - happy happy as can be.

--------------------
How Many Roads Must A Man Walk Down Before He Admits Hes lost

Post Extras: Remind Me!   Notify Moderator  
Pages: 1 | 2 | (show all)


What's New at TheBody.com

Additional Information
0 registered and 1 anonymous users are browsing this forum.

Moderator:  TheBody, bogart, crabman, riverprincess 

Permissions
      You cannot start new topics
      You cannot reply to topics
      HTML is enabled
      UBBCode is enabled

Thread views: 11200

 
Jump to

Contact Us | Privacy Statement The Body

*
UBB.threads™ 6.2.3