Quantcast

Subscribe to:
POZ magazine
E-newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
September 02, 2014, 06:59:36 PM

Login with username, password and session length


Members
  • Total Members: 23377
  • Latest: Stevieb
Stats
  • Total Posts: 636930
  • Total Topics: 48346
  • Online Today: 304
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Why am I becoming averse to this site?  (Read 4403 times)

0 Members and 1 Guest are viewing this topic.

Offline CalvinC

  • Member
  • Posts: 143
Why am I becoming averse to this site?
« on: August 15, 2006, 08:39:31 AM »
Hi all

I put as provocative a subject line as I might in order to driectly draw your attention to how I'm feeling about poz.com. Or maybe it isn't poz.com; maybe it's just me. Here's what's up.

As many of you know, I am recently diagnosed but in excellent health with excellent labs, and I live a very healthy life and I'm trying to make changes for the better etc etc. You've all been very helpful in getting me through the first three months and I'm very grateful.

However, I'm getting a sense of deep foreboding and fatalism from reading around the site. I know many of you have survived a lot of deep crap, and that isn't what I'm referring to. It's just that I get the sense from tooling around on the site that I have nowhere to go but down. Yes, I may be asymptomatic for a number of years and not have to take meds (and I realize and very much appreciate that fact, as I know many of you are struggling through difficult meds and symptoms), but there seems to be somethng indiscernable hovering in the air, that my current state of "I'm fine" is just a mask of denial.

As I've said, I don't think I'm in denial, and I don't think much about my hiv, though I do acknowledge its reality in my life. But being around the site makes me feel that I'm not being serious enough and/or that I should be more anxious and/or that I'm just a fool to believe that I'm so well off and so I should start planning for a horrible future now.  I know, I know, this is likely just my own anxieties, but tell me: am I living in a fool's paradise for thinking the way I do, ie, largely ignoring my hiv status and just moving along with my life? I like the people here very much, but the kind of "future" I see for me as it might be reflected in some of the posts is just getting me down.

I hope you all realize I am not trying to condescend or anything like that. It's just that I'm beginning now to worry...and I really don't think I should be worried.

What do you think?

Andrew, worrying

Offline The Canuck

  • Member
  • Posts: 628
Re: Why am I becoming averse to this site?
« Reply #1 on: August 15, 2006, 08:50:50 AM »
Hello Andrew,

I don't have much time for answering your question as I still have a few things to do before leaving for Montreal later this morning. I'll answer this to you in Montreal..in person.  ;)

Regards,

The Canuck

Offline Cliff

  • Member
  • Posts: 2,645
Re: Why am I becoming averse to this site?
« Reply #2 on: August 15, 2006, 09:03:02 AM »
Ignoring your status is not good.  Moving on with your life is.  But moving on with your life, doesn't have to mean ignoring your HIV status.  It's more about learning to appropriately integrate your disease into your life.  How this is done is up to you, since it differs from person to person.  We all approach life differently, and the same is true with being HIV positive.

How I manage my disease may differ from how Claude manages his.  That's not to say that one of us is wrong.  It's just a matter of personal perspective, choices, circumstances that each of us live in (which may be impacted by financial matters, access to proper health services, health insurance, geography, politics, etc..).

I see a varied future here.  But I also accept that MY future is dependent on the decisions that I make, as well as plain old fate, (i.e., the things I can not control).  All I can do is make sure that I make the decisions that I feel are right for ME and hope for a measure of good luck!

Cliff
« Last Edit: August 15, 2006, 09:05:11 AM by Cliff »

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: Why am I becoming averse to this site?
« Reply #3 on: August 15, 2006, 09:22:22 AM »
Andrew,

Your post brings up some very deep, yet  very simple questions.  I want to reflect for just a second.

You have a wonderful job, that inspires you mind, keeps you relatively well set financially, insures you medical coverage, you live in a city/state/country that is open to those affected with HIV, and is also open to the Gay lifestyle; all these things which should lift some of your dred of the future.  When you read and absorb things sorrounding HIV, it is terribly important for you to separate those details which affect others here, and not you in your personal situation.  Basicly, you have it really good Andrew.  I think taking care of your psych. issues is also very important now, as it will set you up to be able to "LIVE" with HIV, rather than it living with you. 

Don't you think it is very much a matter of perspective?  Think about something.  What can you do about all the problems that many of us are coping with right now?  Not much, but be there and be available to listen and offer help and support when needed.  Otherwise, you must focus on your life today, and everyday as a gift, and what are you going to do to make today a good day?  Please remember, today is all we have, and to inject all these foreboding thoughts and emotions into today, will surely set you up for loads of confusion and doubt.  None of us is guaranteed a full and long life.  None of us know the future, (thankfully) but we MUST focus on what we can impact and what we have no control over at all. 

Today, you have the power to be nice to someone, you have the strength to help someone who needs the help really badly, you have the mental capacity to think about something which really needs your attention today, and in the end, that is all we have as humans.  I know of an AIDS Memorial park in your city, which could probably use some cleaning up, or maybe you could just go there and focus on some of the names of those passed, and while doing so, re-affirm your desire to make the life you have one of power and good will.  I also know that there is one hell-of-an AIDS Service organization where you live that could definately use some volunteer help in keeping those people in your city in good health, and delivering meals, or even answering the phone, while the staff goes for lunch.  You have a wonderful life there, and to waste any time worrying about the future, and issues you have no control over is really not a very constructive way to spend "TODAY".

Think about it Andrew, our lives are made up of one day at a time, and to project anything more onto that, is not very constructive.

I hope some of my keystrokes help you now, and I am so very much looking forward to meeting you in Montreal.

In Love and Support.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Why am I becoming averse to this site?
« Reply #4 on: August 15, 2006, 09:45:48 AM »
Hi Andrew,

My advice to you is three simple words; BE HERE NOW.

Why worry about the future to this extent? Today you are healthy, why spoil that with worrying about tomorrow's what ifffffs? The treatments are improving all the time and it could be years before you even need to consider them. Taking each day as it comes isn't living in denial, it's simply enjoying what you have today. Just make sure you're being monitored regularly and let tomorrow take care of itself. You can only do anything about what is going on right here, right now, in the present moment. To think otherwise is to invite anxiety and disappointment.

Enjoy today, be here now.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline David_CA

  • Member
  • Posts: 3,246
  • Joined: March 2006
Re: Why am I becoming averse to this site?
« Reply #5 on: August 15, 2006, 10:10:49 AM »
Andrew,

I'm relatively new to all this HIV stuff too.  It's not even been six months since I was diagnosed HIV+.  At first, reading about some of the issues that people have really bothered me.  Then I noticed how many MORE folks didn't have those same problems.  You may or may not have totally accepted HIV into your life, but give yourself some credit for dealing with it as well as you have.  Three months is not a long time to accept ANY major change in one's life, whether it's a job change, a residence move, or a relationship change.  Look at other's problems as something to learn from, things to look out for, etc.  Draw from their experience, but know that yours will most likely be different.
 
I started feeling like your post indicates you're feeling a couple months ago.  Eventually, I didn't want to have much interaction with anybody (except my partner and a few close friends).  I didn't want to deal with a lot, either.  I had those feelings of 'impending doom'.  Then I began to have weird feelings when I got stressed... at work, in traffic, on the phone, etc; I started having slight trouble breathing, like there was pressure on my chest.  I discussed it with my Dr. and he said this was anxiety.  He said that he often sees it a few months after diagnosis.  I was actually having mild panic attacks!  I started taking Prozac, which has helped immensely.  I didn't realize how negatively my HIV diagnosis was affecting me.  I don't plan on staying on Prozac permanently, but will if I need to.  I think these feelings creep up on us, and we don't recognize them 'til they've gotten pretty intense.  It's almost like the stress and pressure exceeds our coping levels.

Anyway, I don't know if this will help you or not. The point is talk to your Dr.  He may prescribe you something or suggest counseling.  If you have faith in him/her, try what's suggested.  It just may help.  Good luck with it and I'll see you in Montreal!

David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline Boo Radley

  • Member
  • Posts: 1,252
  • Not a "real man" and damn proud, mithter... FAB
    • Animal Rescue New Orleans
Re: Why am I becoming averse to this site?
« Reply #6 on: August 15, 2006, 10:15:42 AM »
Andrew,

I know exactly how you feel, or rather I know how I felt for so long because my health has always been good.  I didn't start meds until October, 2004, not so long ago considering I tested poz in December, 1989 and believe I was infected in December, 1981 (gist: receptive sex over 3 week period with guy who died 2 years later; serconversion flu symptoms several weeks later [i.e., in Jan., 1982]).

When I was in good health and not yet in need of HAART I felt regular pangs of guilt every time I read about a forum member's latest problem or heard/experienced one of my local friends most recent AIDS horror story.  It was impossible for me not to feel that way, and over time it became alienating.  I was always waiting and dreading the time I would have the same experiences.  That time has never come.  My drug regimen is contra-indicated for most (Trizivir and nothing else) but has been very easy over the last 22 months and seems to be working well (knock on frigging real wood, please) for me so far.   I've never had an OI and I still feel guilty because my life with HIV has been so much easier than many others' lives are or have been.  But I don't blame myself for surviving any more.  I'm too mean to die and that's a fact.

Don't plan for a horrible future.  If it comes it comes.  I may have some horrible days ahead but I'll deal with them when they occur.  Always remember and be thankful for your good health and your body's ability to fight HIV -- it may be Stuart Smalley (?) of me but every day in every way your life gets better and better -- this is obviously a total falsehood but it never hurts to think positively.  I also truly believe my sense of humor (or humour for our Canadian, U.K., Australian, and New Zealandian forum members) has kept me alive, especially as life has become so bizarre in the new millennium (were I of a religious bent I'd opine that G. W. Bush is the anti-christ).  Katrina last year changed my perspective on just about everything completely.   Mother Nature can really teach you a lesson you'll never forget (so can the Corps of Engineers and our rat-ass bastard elected officials on the local, state, and federal levels.)

Another aspect of living with HIV is how others treat you and how it affects your romantic/sex life.  If you have a supportive partner you're lucky but there are people out there educated enough about HIV to deal maturely with the issue.  Unfortunately at times it may seem as if they are the exception and ignorance/fear is the rule, but we are talking about HIV=AIDS in the second "just say no" era, when promoting sexual abstinence is seen as a first-line defense against HIV infection.  I find incredible ignorance all over the place but at the same time I have found almost universal acceptance of my HIV status in the people I dealt with and deal with in my life.  Of course, I've sublimated sexual urges with food for about 5 or 10 (or 30) years because I got tired of negotiating with neg guys fearful of my touch and since New Orleans is a fairly small city I quickly worked through poz guys, so that icky thing Freud called sex isn't much of an issue any more.  Being fat is even better for maintaining celibacy than having HIV, let me tell you!

I sincerely hope I don't seem condescending and if I offend anyone in any way it's unintentional (unless you're going to chastise me for making fun of fat -- go suck a cow).  To iterate my point: life with HIV is different for each one of us.  For those of us with "good counts" who are "asymptomatic" it's not unusual to be ever wary of the sword above your head (or always expecting the other shoe to drop, if you prefer that metaphor) or to feel strange or guilty about the suffering of others, but you can exercise what little control over life any of us has only on your own life.  Be supportive and compassionate and loving and a friend and you'll probably find those qualities in the people in your life, whether in this forum or anywhere else.  

I can't believe I'm doling out such PollyAnna-ish advice so if this is drivel please consider I have not been to sleep in almost 24 hours and my mind has always been rather weak even at the best of times.

Boo

P.S.  I concur with Ann and wish I shared her gift for succintness: be here now
String up every aristocrat!
Out with the priests and let them live on their fat!





Everything I do, say, think, excrete, secrete, exude, ooze, or write © 2007 Sweet Old Boo, Inc.

Offline Life

  • Member
  • Posts: 2,388
  • Member 2005
Re: Why am I becoming averse to this site?
« Reply #7 on: August 15, 2006, 11:05:35 AM »
Andrew... I write this while the UK London Classic FM is playing "Adagio for Strings."  How inappropriate a piece to be listening to now!  I felt like Barber's work for a very long time.. Probably the first 8 months after diagnosis.   ACCEPTANCE IS THE KEY..  As Ann always reminds me  as well as my sponsor.  "So whats wrong with NOW?"   If your peering into the looking glass through these threads, remember these are the lives of others,  not yours..   Choose your path, not someone Elise's.  Live your life, not someone Elise's.  Support others and get out of the "I" and get into helping "them".  Your healthy...

These feelings will change that you decribe... Thats what feelings do..  They change every second.
« Last Edit: August 15, 2006, 11:21:35 AM by Eric »

Offline Life

  • Member
  • Posts: 2,388
  • Member 2005
Re: Why am I becoming averse to this site?
« Reply #8 on: August 15, 2006, 11:08:16 AM »
Oh Christ, as soon as I pushed enter the UK is playing Handel's Hallelujah chorus??  NOT BULL SHITTING YOU EITHER.... Way to weird...  Those British!

Offline emeraldize

  • Member
  • Posts: 3,344
Re: Why am I becoming averse to this site?
« Reply #9 on: August 15, 2006, 12:32:46 PM »
Eric,
Just an aside here, but it is so grand to know that you are moved by Barber's Adagio for Strings. It is one of the most powerful pieces of music this earth offers.
Em

Offline wellington

  • Member
  • Posts: 508
  • Don't sweat the little things.
Re: Why am I becoming averse to this site?
« Reply #10 on: August 15, 2006, 12:54:22 PM »
Personally, I think it's quite healthy to think about what the future holds, even if the future you presently envision is bleak. If anything, it tells you that it's not the kind of future you wish to encoutner, that you want something more for yourself. Isn't being aware of a potential negative outcome one of the best ways to avoid it?

I read tons of stuff on here with which I don't empathize. However, what I realize is that's much the same way life is. Pick and choose what information you hold close and decide to pursue, as with anything, but turning off the channel would be ill-advised, no?

Offline Miss Philicia

  • Member
  • Posts: 24,021
  • celebrity poster, faker & poser
Re: Why am I becoming averse to this site?
« Reply #11 on: August 15, 2006, 01:06:25 PM »
Calvin, I think the problem could be that you're overdosing on information.  When I was diagnosed in 1993 I didn't have resources about HIV like folks can access now via the internet.  I think we all must look at things in this context to weigh how much information is good, and how for many people such easy access, while a net positive, can also have potentially negative consequences.

It's easy to feel the need when first diagnosed to learn everything possible about something so new to us, but you also have to realize that mentally this might be taxing if taken to the extreme.  Those of us on these fauna that have been dealing with HIV for over a decade are inevitably going to post experiences that will overwhelm the newly diagnosed.  You should just not take these situations as things that inevitable.  The current state of HIV treatment has wildly improved in the last 5 years, mostly because you have the older diagnosed folks like many of us here who have served as guinea pigs for you newbies.  At the same time the guinea pigs here are simply happy that they are still alive because there were so many of our compatriots that did not exit the 90's at all.

I think if you read threads which seem overwhelming in this context I described perhaps it will help you to not become overly alarmist and fatalist.  I've had some rough spots over the years but when I read some of the other experiences here it helps me realize that there have been many, many others that have had it much worse than me.
"Iíve slept with enough men to know that Iím not gay"

Offline Bartro

  • Member
  • Posts: 124
Re: Why am I becoming averse to this site?
« Reply #12 on: August 15, 2006, 01:11:18 PM »
Andrew,

I have to say we share the same feelings.  There is plenty of fuel for nightmares here.  I too have been on treatment for just a few months and feel well.  I read of some of the horrible things that can and do happen to people with HIV.  Sometimes I find myself wondering when it will be "my turn".  But then again, I see how well people cope with issues and somehow manage to continue on.  I continue to read so that if and when "my turn" does come up I know that I, as others have, can deal with these issues and continue on.  
Rusty

Offline Eldon

  • Member
  • Posts: 2,664
Re: Why am I becoming averse to this site?
« Reply #13 on: August 15, 2006, 04:36:17 PM »
Andrew, it is Eldon. From time to time we all need and added structure to our support system. AM gives that structure. This is a site where we can all relate to one another, share our experiences, get answers to many questions, and more. Your'e not alone.

Offline CalvinC

  • Member
  • Posts: 143
Re: Why am I becoming averse to this site?
« Reply #14 on: August 15, 2006, 07:27:14 PM »

Thanks all for such in-depth responses. Lots to mull over and I will respond, I hope, tomorrow, when I get to Ottawa. Then Montreal on Friday.

But this whole thread has thrown me off again, only in a different direction. I watched a bit of Oprah today, and she had this woman on, who had not only a double masectomy (sp?) but also a brain tumour operation.

And you know what? I got angry. I got so F***ing angry because I thought, Here's this woman and *she* is the one who has to be brave, she has to smile and reassure everyone, it's not about F***ing Oprah and her crappy empathy. And I was angry too at the woman because now I feel like I am like her, I'm one of the people *other* people now "feel sorry" for, like I'm a freak object for their f***ing empathy so they make themselves feel better.

I don't want to go there, I don't want to be this, I'm just sick and f***ing tired of making this okay for everyone else. I don't know how to let go and tell people I'm afraid, so afraid of being alone. Yeah, so I've got great friends and support and health....and I'm still angry I got dumped and lied to and made to feel like I'm a leper.

Oh geez, sorry all, I'm seeing my therapists next week and will process this. But damn....

andrew

Offline Ann

  • Administrator
  • Member
  • Posts: 28,140
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Why am I becoming averse to this site?
« Reply #15 on: August 15, 2006, 07:41:37 PM »
Andrew,

Don't be so hard on yourself. Learning that you have a serious illness is very much like going through a bereavement. When we're diagnosed, we go through stages of grief for our "old" life, our life before hiv. Anger is one of the stages. Don't bottle it up - but do try to vent in safe ways. Sometimes it helps to beat up a pillow and/or scream into it. Whatever you do, try to not swallow that anger because it will only eat away at your soul.

And don't apologise for coming here to vent. That's part of what this place is for.

Hang in there hun, I don't feel sorry for you, but I do know where you're coming from. We all do.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline ds4146

  • Member
  • Posts: 317
Re: Why am I becoming averse to this site?
« Reply #16 on: August 15, 2006, 09:25:51 PM »
This is my second reply in one night, maybe I have just had one of those days, but here goes. I just read "I Just Can't Believe It"! and felt so angry! It could be that it has been a long and difficult day, or maybe I am just pissed. Perhaps I do not interact enough: response, support, etc., etc. But it really brings back my days in ACA, Adult Children of Alcoholics, when after two years I realized all that I heard was the same shit week after week. For me, and perhaps many of the newcomers, we are looking for inspiration, positive feedback, not woe is me. I remember when I first found this site, I was so happy for myself and had such hope for support, interaction and feedback that was constructive, but I am feeling the same way as you. Keep this in mind, and I will as well, there was something here, we just need to find it. Patience!

Offline Robert

  • Member
  • Posts: 2,644
Re: Why am I becoming averse to this site?
« Reply #17 on: August 16, 2006, 12:35:29 AM »
Hey Andrew.

I don't know if you're going to read this before Friday.  If not, well then I'll try to explain it over a martini or two and if that doesn't work, we'll take it out on the dance floor and dance it off. 

Anyway, it's the meds.  Before this virus, I was fine.  Oh I had my ups and downs but had never had an anti-depressant in my life.  Now I'm on prozac becausee I just feel so friggin' down every morning.  I'm convinced it's the meds.  Oh you can throw in the fact that the virus is part of you now, but I don't think about that much.  I've been knocked down a few times before and, what the hell, I just pick myself up, brush myself off and go back into the fray.  But, it's the' meds, I'm telling you, the friggin meds  that drive me batty.

Check out This article from last week..

If you're not on meds yet, hey, you're doing great.  DOn't let us bring you down.  LIfe is too short for that.

robert
..........

Offline angels4kelly

  • Member
  • Posts: 305
  • IT JUST IS!!.....OKAY!
Re: Why am I becoming averse to this site?
« Reply #18 on: August 16, 2006, 01:29:25 PM »
Hello Andrew,
For some reason I just can't get this topic off my mind!
I just really can't put into words what I feel for some reason.
I just know that I have strong feelings about this and if I don't post my reply and try to make some sense of my feelings to you, I WILL JUST CRY :'(

Okay, a little while back I posted a topic called "ASYMPTOMATIC".
I posted that topic because I felt bad that there were a few very ill people here and I had nothing to contribute to help them feel better.

Well the key is that there are "just a few very, very ill people here" and they need my support as well as support from those healthy enough to maybe help them feel a little better

Don't ask me why it took so long for me to realize that there is SO much support here for EVERYONE.

So you see we need the people who are healthy to offer support to the ill and in turn we learn to be compassionate and empathetic.

I don't know if all this makes sense to anyone else or not.
I hope so. If not, well it makes sense to me.
I am just not very good at putting my thoughts and feelings into words ever since my stroke.
I just want as many good hearted people to continue to contribute to these forums as possible.
The thought of losing one(you) is rather painful emotionally to me.

Peace

Love

Kelly
POSITIVE SINCE-10/1990
CD4-610
CD4%-29.3
VL-UNDETECTABLE
VIREAD,VIRACEPT, EPZICOM

MOST RECENT...
10/9/2006
CD4's-714
CD4%-30%
VL-Undetectable
DIAGNOSES POSITIVE 10/90
SAME MEDS, VIREAD, VIRAMUNE, EPZICOM.

SHOOT FOR THE MOON! YOU MAY MISS,
BUT YOU'LL LAND IN THE STARS :)

Knowing others is intelligence;
knowing yourself is true wisdom.
Mastering others is strength;
mastering yourself is true power.
 
Failure is not in falling down,
but the staying down

Offline stevevaboy

  • Member
  • Posts: 60
  • In disguise ;>)
Re: Why am I becoming averse to this site?
« Reply #19 on: August 16, 2006, 01:48:36 PM »
I was diagnosed about a 1.5 yrs. ago and had very good CD4/Viral load numbers at that time.  I've always worked out, ran, bladed, etc... and ate the right foods.  My docs told me, and I hoped and believed, that I'd could go MANY years w/o meds.  I basically minimized the fact that I even had HIV, though it was in my daily thoughts.

I'd dealt with depression and those meds on several occasions, but at the time of diagnosis and since then I've done everything practical - including moving from the East Coast to West Coast (Va. to San Diego) - to keep my mental state stable and w/o need of anti-depressants.  What I didn't count on was that while I was living my life "without HIV" and piling on and accepting many new challenges like the rest of the uninfected population my mind/body began to succumb to the stresses bought on by all of these changes.

Not long after making the big move, moving in with a roommate (after living alone for many years) and starting a new job I started to feel very different.  Long story shortened - I started on meds (Truvada/Viramune) several months ago, which have since failed me, and now I'm on to new meds (Truvada/Reyataz/Norvir) and should find out next week if they're working (something in my gut says NO, but I'm optimistic!).

If I have a point to make here to Andrew and others it's that BALANCE is the key to dealing with this disease!  I see many instances where some of the people here sound like doctors - and being educated IS GREAT!  But, I also think that obsessing over HIV is no more beneficial (perhaps more harmful) than living your life like you're not infected at all.  BALANCE is the key!  I find living day-to-day is a difficult struggle sometimes, so on my worst days I run to the beach and all of my problems disappear, but if I find myself sitting on the beach every day then I soon realize that I'm running from or trying to escape my reality and things are not being dealt with (bills, laundry, work, etc...) - BALANCE, BALANCE, BALANCE!!!

On the same matter I'm seriously thinking that the HIV meds are starting to take their own toll on my mood, as someone previously alluded to.  I just can't for the life of me seem to feel upbeat about ANYTHING right now and I'm struggling to keep afloat.  I'm doing all I can to stay off of the anti-depressants (and PLEASE, no lectures on "taking them when necessary"), but will consider them... like I need another co-pay and another med to choke down in the morning!

I think I'm done for now.  Remember BALANCE and that things can change quickly and unexpectedly, so live for today!   I feel a beach day is here for me today, but tomorrow might be productive... I just never know at this point.

Steve
;0

Offline ChaplinGuy

  • Member
  • Posts: 236
  • Eat my left foot
Re: Why am I becoming averse to this site?
« Reply #20 on: August 16, 2006, 04:10:52 PM »
It was actually my wife, Calvin, that helped me notice the same trend and feelings that you're pointing out. And I walk away with the simple understanding that we're all here to find comfort, to find anwers, to find help, to find joy, to find a "collective" that can't truly exist unless we accept that the sum total comes from incredibly diverse parts. In just my few weeks of reading and posting on this site, I have gained a ton of valuable insights and also learned that I can't use the site to predict or build a map for living my life. I have to do that for myself.

There is nothing wrong with what people choose to say or post to help them deal with their own individual issues. But we all can't read it looking for answers that won't fit in our own life.

Offline allopathicholistic

  • Member
  • Posts: 3,258
Re: Why am I becoming averse to this site?
« Reply #21 on: August 16, 2006, 06:08:28 PM »
I watched a bit of Oprah today, and she had this woman on, who had not only a double masectomy (sp?) but also a brain tumour operation.

And you know what? I got angry. I got so F***ing angry because I thought, Here's this woman and *she* is the one who has to be brave, she has to smile and reassure everyone, it's not about F***ing Oprah and her crappy empathy. And I was angry too at the woman because now I feel like I am like her, I'm one of the people *other* people now "feel sorry" for, like I'm a freak object for their f***ing empathy so they make themselves feel better.

I don't want to go there, I don't want to be this, 

Andrew sweety. I predict you will be singing a different tune in a matter of months or even weeks. those sentiments you mentioned are pretty normal - When I watched Pedro Zamora on Real World 3 I was neg at the time but I had this off notion that people were watching/listening and "feeling pity" for him ... It's not about pity. It's about connecting - it's about truth , freedom from lies, masks, facades. We all bleed the same.. NONE OF US ARE IMMORTAL. we all go to the grave - healthy, ill, black, white, brown, tan. even the adorable perfectly healthy day-old Gerber baby in the infant ward will eventually go to the grave. If people want to pity, **THAT** is a freaking facade and it reeks of denial and fear. all mankind should pity one another because we are all MORTAL. um, okay, let me rephrase. we should all connect with our inner love and "light" benevolent power because we are all MORTAL and our ultimate fates are COMPLETELY IDENTICAL ... so telling a story on oprah isn't about pity. it's about reality. truth. i bet if you asked that double masectomy woman on oprah if it was worth going on tv and talking pure truth to milions of strangers she would give an unequivocal "yes" ... i suspect the anger you felt toward her or oprah or the show itself or whoever is more likely just confusion /fear of the unknown

Edited to add: re: this site, yes I sense the struggles, but I also cherish the "happy dances", the "never give up" spirit, the good news. Those positive posts are my focus, but my soul also connects with the flip side.
« Last Edit: August 17, 2006, 10:13:51 AM by allopathicholistic »

Offline CalvinC

  • Member
  • Posts: 143
Re: Why am I becoming averse to this site?
« Reply #22 on: August 17, 2006, 08:52:48 PM »
Hi all

I've reread all the responses yet again, and I must say I'm in a better space tonight (even though I'm still in Ottawa and won't be in Montreal until tomorrow). Thank you all for contributions, long and short. They ALL made sense and addressed areas I had not often thought of.

I am on medication for OCD, which I have lived with since I was 13 (but have only been on meds for for about 10 years). I am not suffering from anxiety, generally, other than that which has been accompanying me since I am trying to change (though not as much as Steve was/did) and since I got the heave-ho (and yes, I'm still by turns angry and sad and obsessed by it all still).

In this morning's local paper, in light of all the press that the Toronto hiv/aids conference is getting, there was an article about a guy in Ottawa who has lived with aids for 22 years. It was dire. The tone of the article was that such is the lot for all positive people. It really wasn't balanced and I'm wondering at the guy for having participated in the article (though likely he couldn't have know how it would end up). This is, as Philly said, too much information that was not helpful to me.

The odd/funny thing is that two days after my diagnosis, I got a very small and mild spotting of psorasis on my legs and it's not going away. I know it's related to the stress of testing poz, but it's a reminder still of that. I can't get it to go away.

Yes, allopath, I do hope that in a few months I will be singing a different tune. I just figured that here being 3 months I should have gotten over getting dumped and, in many ways, being poz. Unfortunately, those two events are so closely tied together that one impinges on the other. It's much more difficult than I had hoped. But I know I am blessed to be healthy, and so I will try, as Ann wrote, to BE HERE NOW. I pledge to seek out more support AND to offer it in turn, and not just hiv issues but life in general. There's no other option, really, and no other option I would care for in any case.

Andrew


Offline Eldon

  • Member
  • Posts: 2,664
Re: Why am I becoming averse to this site?
« Reply #23 on: August 17, 2006, 09:21:48 PM »
BE HERE NOW. I pledge to seek out more support AND to offer it in turn, and not just hiv issues but life in general. There's no other option, really, and no other option I would care for in any case.

Andrew, now that is the type of attitude to have. It all will turn itself around.

Offline B99

  • Member
  • Posts: 33
Re: Why am I becoming averse to this site?
« Reply #24 on: August 18, 2006, 08:09:32 AM »
I've been busy for a while, and this post will not get read because it's so far down, but you can look at this site as an extension of human interactions.  Look at any aspect in all of our societies, since we all come from different ones; a common thread is that TRAGEDY is a cultural commodity. 
Not implying that we like to see people in pain, but that pain and suffering stirs our emotions easier than happiness and joy.  It may not always be sympathy, suffering, and reports of it, can induce indifference in some people.  And indifference is an emotional response.
I'm sure a lot of people know this, but when you have a bad experience, customer-service wise, you will tell 10 people about it, as oppose to when you have a good experience and just tell two.  People are more inclined to tell the bad.  When we are satisfied, we are less likely to say something.  That's why there is that feeling of doom and despair.  I even see it in my own postings.  I rarely come on here and tell people about my happiness.  My trips out of town, new relationships, etc.  And if I do, I'm normally framing it around some HIV related concern.
Most of us, HIV or no HIV, are really always waiting for the bottom to fall out.  We are scared that our relationships will end, scared of political practices, scared to invest in the stock market, scared of having no money.  And they are legitimate concerns.  But you take things in steps.  Just like you plan for retirement a day at a time, vote in each election, invest regularly over time, you do the same with your concerns.  YOU PLAN FOR THEM, BUT LIVE YOUR LIFE.
If there was a way to actually study how often the things that we stress about actually come to fruition, I would say the percentage would be extremely small.  Here in America it's funny how much we are worried about a massive terror attack.  The World Trade Center was in 2001, the first one was 1993, I believe, but there are people in Rwanda, Somalia, Afghanistan, etc, who have been living with "terror attacks" 24/7 for decades.  Most Americans will probably never be involved in a terror attack, but that's foremost in our thoughts; not that millions are dying from lack of health care (those with AIDS and other diseases), murders, etc.  People could care less.  But keeping toothpaste and baby formula off of airplanes will save soooo many lives.  We live in soundbites/extremism, not real education and knowledge.
Terror attacks and tragedy are "sexy"; they are scary.  The media seeks the sensational.  Really educating people is not attractive.  Otherwise, if reading a textbook was like watching porn, dropout rates wouldn't be so high. :)
When someone is having an issue/sickness from HIV or whatever, I always think about context.  Not to blame anyone, but what are other things surrounding this person's situation.  My grandmother died from diabetes complications.  Sad, but when someone just hears that they don't know the history.  My grandma rarely stuck to her diet, which may or may not have had something to to with her death (more likely may). 
Always think CONTEXT not just the story: things can get left out, exaggerated AND, on the other hand, diminished and slighted in the translation.

Offline ndrew

  • Member
  • Posts: 695
  • ....-.-.-.-.-.....
Re: Why am I becoming averse to this site?
« Reply #25 on: August 18, 2006, 08:46:19 AM »
Hello Andrew,

I feel the forums can be overwhelming as well, but perhaps I am becoming desensitized.  Or perhaps I am gaining knowledge of the kinds of issues I could face and an understanding of how others cope with these things, but really a lot does not apply to my situation at this point and probably never will.  It is clear that we are all so different and this disease is quite complex- emotionally, physically, socially, etc. and treatment technologies are changing.

I think sharing your fears about the forums is a good thing.  I have been concerned about some of the posts and even my own posts, but I think being alone here, without any support would be even more negative.

As a text-based community, it is good to consider how to keep it vibrant, positive and how you can act to get the most out of it.  I am certainly learning these things.

Thanks!
Andrew

Offline Jeffreyj

  • Member
  • Posts: 1,403
Re: Why am I becoming averse to this site?
« Reply #26 on: August 18, 2006, 10:59:05 PM »
Q Why am I becoming averse to this site?

A= because YOU CHOOSE TO
Positive since 1985

Offline Gilles

  • Member
  • Posts: 63
Re: Why am I becoming averse to this site?
« Reply #27 on: August 20, 2006, 01:08:56 PM »
Calvin C, I know exactly what you mean, this site is great for some answers that I might have about the virus but I often try to avoid to go through people's stories because they often get me down. It might be said that I am trying to avoid the reality of HIV, but it is not true. We have to remember that this site only represents small fraction of HIV population. It can be also argued that people that have not had any problems with the virus often never come to this sort of sites and get on with their lives. This site is great for getting support and answers that you need for immidiate questions, but sometimes we have to remember that we are different individuals who will cope differerently to the virus and try not to get too down with unfortunate experiences of other people.

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.