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Main Forums => Pre-HAART Long-Term Survivors => Topic started by: craftypoz on June 23, 2013, 08:44:02 pm

Title: I feel a little silly sharing this ...
Post by: craftypoz on June 23, 2013, 08:44:02 pm
Hi all -

I've been poz since 1995, and been with my partner (who is HIV-) since 2001. In that time I've been fortunate to remain fairly stable and undetectable. Life goes on pretty routinely, and often my only reminders of my situation are the once daily doses of meds, and the periodic check-ins with my ID specialist.

But lately I have begun to question or wonder if I have really dealt with what I have, or have I just been in a moderate state of denial for all this time. I know I have it (obviously) but I don't think I've ever given myself permission to acknowledge how I feel about it and to really deal with that.

The community is small where I live and I have told almost no one (outside of my partner) which is why I am posting here. I feel like I'm moving into a place of really dealing with this on a deeper level, and perhaps because I haven't really had symptoms, it's been easy not to deal with it.

I think to myself, "You've been poz for 18+ years - and you're just NOW wanting to deal with it?" So I'm even giving myself a hard time for that. I feel like I should have it all figured out by now, and I haven't even really started. I've put it in its compartment to be dealt with when necessary (and I don't think that's healthy).

I'm going to visit these forums a bit more often - it will be nice to connect with other people living with HIV (since I don't really have anyone in my life right now who is dealing with it - or who at least has said anything).

Thanks for listening - glad to be here!
Title: Re: I feel a little silly sharing this ...
Post by: Jeff G on June 26, 2013, 10:55:01 pm
Welcome to the forums . I can relate to what you shared , I was so busy surviving I forgot or didn't have the energy to pay attention to my emotional health . I had lived over 20 years stuffing all my feelings and anxiety's away to be dealt with later and that worked for a long while until it didn't anymore .... I hope you stick around , we have a very interesting and supportive community here and you are welcome to be a part of it .
Title: Re: I feel a little silly sharing this ...
Post by: phillypinko on June 27, 2013, 12:12:38 am
 I do a lot of crying. I am rejected or at best tolerated by straight people because I am gay. I am rejected or at best tolerated by gay people because I am positive and am at best tolerated or rejected by positive people because I am bipolar. Life sucks and then you die. Get used to it.
Title: Re: I feel a little silly sharing this ...
Post by: craftypoz on June 27, 2013, 10:06:58 pm
Jeff - Thank you for sharing your experience. It's nice to know I'm not the only one who has tried to stuff feelings away until, as you said, it just doesn't work any more. I am looking around here in the forums and look forward to learning from others' experiences.

Philly - I'm not sure how to respond to your post, but I see the undertone of hurt and please know I send only good thoughts your way. Even in tough times, I try to stay positive and keep things in perspective. Sometimes that's not easy, but what are the alternatives? Take care.
Title: Re: I feel a little silly sharing this ...
Post by: phillypinko on June 27, 2013, 11:39:34 pm
Jeff - Thank you for sharing your experience. It's nice to know I'm not the only one who has tried to stuff feelings away until, as you said, it just doesn't work any more. I am looking around here in the forums and look forward to learning from others' experiences.

Philly - I'm not sure how to respond to your post, but I see the undertone of hurt and please know I send only good thoughts your way. Even in tough times, I try to stay positive and keep things in perspective. Sometimes that's not easy, but what are the alternatives? Take care.
BLAH BLAH BLAH...generic platitude, generic platitude, generic platitude...BLAH BLAH BLAH.
Title: Re: I feel a little silly sharing this ...
Post by: Jeff G on June 27, 2013, 11:45:46 pm
BLAH BLAH BLAH...generic platitude, generic platitude, generic platitude...BLAH BLAH BLAH.

Philly , people have gone out of the way to reach out to you . We haven't dismissed your feelings and ask you not to trivialize others peoples efforts .

Crafty has all of 2 post here and I want him to feel as welcome here as you are ... I dang well mean it too , its far from platitudes .
Title: Re: I feel a little silly sharing this ...
Post by: jkinatl2 on June 28, 2013, 12:31:53 am
I do a lot of crying. I am rejected or at best tolerated by straight people because I am gay. I am rejected or at best tolerated by gay people because I am positive and am at best tolerated or rejected by positive people because I am bipolar. Life sucks and then you die. Get used to it.

Philly, you need to print out this thread and take it toyour therapist. Make two copies, because you might need another therapist when this is done.

You are going through what you and I both know is a classic bipolar situation. I wish you had done this in your own thread, but since obviously you are in dire need to help I hope you take some of this to heart.

Something is NOT working with your bipolar condition. If it isn't adherence to meds (which is notoriously difficult ina bipolar situation) it might be tht your meds need to be adjusted or changed. You are not the person who dismisses others, nor are you a person who intentionally hurts others. Mitigating factors can often thoroughly mess with the delicate ( and you and I both know we put "delicate" mildly) balance of biploar medication/therapy and HIV therapy. The two sometimes work against one another.

PLEASE get seen soon, and try to coem to a better place.

To the OP: Sorry, sorry! I do not mean to belittle or hijack your thread. I just saw someone who really, really needs to take care of stuff in an immediate way. I meant no disrespect, and would gladly chip in except that I have given myself a week away from the forums to gather my own head, as several things are going on that make the entire concept of the term "moderator" impossible.

Suffice it to say that you are in my thoguhts and as someone diagnosed in 1993, I share many ofyour experiences. Connecting, as you have, is the most viral step.

Title: Re: I feel a little silly sharing this ...
Post by: craftypoz on June 29, 2013, 11:31:19 pm
Philly , people have gone out of the way to reach out to you . We haven't dismissed your feelings and ask you not to trivialize others peoples efforts .

Crafty has all of 2 post here and I want him to feel as welcome here as you are ... I dang well mean it too , its far from platitudes .

I really didn't mean to serve up platitudes. While I am always pushing myself to greater degrees of personal understanding, I would never purposefully put down empty words. Jeff, thank you for helping me feel welcome here. I'm sticking around, so no worries there!
Title: Re: I feel a little silly sharing this ...
Post by: Jeff G on June 29, 2013, 11:43:52 pm
I'm happy you decided to stay !
Title: Re: I feel a little silly sharing this ...
Post by: Buckmark on June 30, 2013, 08:39:21 am
Hi Crafty,

Welcome to the forums.  Your situation doesn't unusual to me at all.  Some of us LTSers have been so busy trying to survive HIV and AIDS that we didn't necessarily learn to live with HIV and AIDS -- especially for the long-term, which we never expected to happen.  Plus, not everyone follows the same schedule and pattern in life.  So I appaud you for reaching out.  It's difficult to deal with HIV when you are doing it by yourself, or even just with your partner.

Cheers,

Henry
Title: Re: I feel a little silly sharing this ...
Post by: wolfter on June 30, 2013, 01:46:41 pm
Welcome to the forums Crafty.  A lot of what your wrote resonates with many of us LTS.  The denial thing worked for me for quite a while until the AIDS started winning the battle.   ;)

In the first years of this virus, I had a difficult time struggling with how to plan long term as it seemed so fruitless.  I was struggling with working full time and going to school full time and often wondered why I was wasting what precious time I had left struggling to pursue my educational dreams.

And through the years, I lost every single person who was part of my inner circle.  It's a tough struggle to live for decades with a freaking virus that we were told would kill us within a few years.

I just turned 48 yesterday and have lived with this virus for 27 years now.  My older brother toasted me yesterday and remarked that it sucks getting this old.  I smiled and made no comment as I am grateful at the thought of reaching 50 as I was told I could probably live to be 30 if all went right. 

Again, welcome to the forums

Wolfie
Title: Re: I feel a little silly sharing this ...
Post by: guitargal on July 01, 2013, 01:02:25 am
welcome. me poz known since  1992.
 51yo female. undetectable for 14 years.!

 i live in a small town and the whole time my son was growing up i kept it a secret as much as possible. i felt good, a few times sick, hospital,  but got to the point after having to take less meds, and got o doc less,  i would forget about it. life was good.

now my son is grown and i have a lot of health problems. severe all at once bone -muscle- joint - pain attacks upon exertion and falling a sleep at the wheel type of fatigue! help!)  i am 51.

i was doing so well until i was on Atripla and then Complera made me worse.

I lied a lot, white ones , nobodies business about me.. to protect my family..people wondered and gossiped ...
like why don't i work a lot,  i looked great , not sick, and  I am smart..
people think i am lazy and just want to be on welfare. (was only able to work part time for a  few months and have to quit. due to fatigue and med side effects. this  pattern i lived for over 15 years.. rough) now i am so ill i have not worked in 4 years!

trying to get on the mend but HIV is in my face all day now. years of searching for help, Dr. after DR. poor care, refusal to refer,
it is getting harder and i have more fear.

hope to turn this around.  Doc wants to try Testerone for the fatigue.

so i thought about the denial thing about 8 -10 years ago. i was doing so well, considering..hiv and hep c...eat well,  live in a clean country place. i put it away. didn't go to the HIV functions, just wanted to be normal!

and that was great and the best thing...
as i said now i deal with it all the time..
live love life
peac and health to you all.
Title: Re: I feel a little silly sharing this ...
Post by: deibster on July 09, 2013, 12:38:41 pm
Welcome all,
I think a lot of this has a lot to do with where we live & the availability of a good ASO, AIDS Service Organization. When I worked, I lived near New York City and went to Friends In Deed in Soho in Manhattan on Broadway. FID is for all people with life threatening illnesses, not just HIV Poz persons; website is www.friendsindeed.org
When I got Social Security Disability, I moved to Provincetown, MA on Cape Cod; the town is over half LGBT. The ASO, the AIDS Support Group of Cape Cod, www.ASGCC.org is a big part of my social life, has free lunches, support groups, etc. If you want to move here, housing is not cheap; it's cheaper if you go to the next town down the cape. MA has a great ADAP program, called HDAP, and great healthcare. The same services are also available in Boston, MA, see www.aac.org  for the AIDS Action Committee of MA.
Best of Luck. Hugs from Provincetown, Deibster