Quantcast

Subscribe to:
POZ magazine
Newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr Instagram
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
December 29, 2014, 02:33:33 AM

Login with username, password and session length


Members
Stats
  • Total Posts: 650644
  • Total Topics: 49678
  • Online Today: 182
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online
Users: 4
Guests: 100
Total: 104

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: Coping With HIV/AIDS, Age and Isolation  (Read 2355 times)

0 Members and 1 Guest are viewing this topic.

Offline Puckslinger

  • Member
  • Posts: 57
Coping With HIV/AIDS, Age and Isolation
« on: August 31, 2009, 04:26:19 PM »
Hello everybody,

I'm a newbie to Poz Forums, but I've been living with HIV since 1992. I got an AIDS diagnosis in 2005 when I had 33 t-cells, and spent three weeks in hospital with meningitis. But,  after getting a new physician who has much more experience with AIDS and changing meds, I'm happy to report my t-cells are now over 500 and I have had an undetectable viral load for more than a year. I have no current side-effects; except a high level of bilirubin that is a benign effect of one of my meds. (In the past, I had many bad side-effects; so I know how hard it can be coping with those on an ongoing basis.)

Why am I posting when things seem to be going so well?

I'm a 61 year old straight guy who has many acquaintances, who are gay and positive, that I have met and gotten to know over the years from visiting clinics, attending events organized by support groups and so on. Although we know each other, we don't hang out together. I am pretty much a loner. And most of my gay acquaintances hang with other gays, and attend activities put on by the local Gay, Lesbian, Bi, Transgendered (GLBT) community.

I am not a bigot or homophobic; but I am clearly not 'at home' hanging out at the GLBT center. I have attended a couple of events over the years, when invited, but I felt like a fish out of water. And I usually touch base with the gay guys I know, now, when I attend the yearly, local, Gay Pride festivities in our small California city.

Anyway, I have no close friends who know what it is like to be living with HIV. In fact, I have no close friends in this area at all. No girlfriend. No one with whom I am intimate.

When I tested positive in 1992, I had been living with my girlfriend for four years. We each had shared custody of our children--my two sons and her two sons-- and we had a nice little blended family. My girlfriend tested negative--much to my relief--and she was very supportive of me and my new 'situation'.

My two big concerns when I first tested positive were about (1.) whether I may have infected her (We had been having unprotected sex several times each week prior to my testing positive.) and (2.) if I would live long enough to see my kids safely to adulthood. This was before the advent of effective three-drug therapy. And testing positive was like getting a death sentence; but not yet knowing the execution date.

We stayed together for another six years, and started using condoms during intercourse.

To make a long story short: After six years, I began to feel like I was becoming an albatross around my girlfriend's neck and I broke up with her. I moved into a small cabin not far from where we had been living, and continued having my children four nights each week, and two weekends each month.

The separation was painful for all of us; but, before we split from each other, I asked my girlfriend if she would get tested again; just so I could rest assured I had not infected her and she was still negative. That was one thing to feel good about. She was still negative.

Two years after our break-up, my girlfriend remarried. But I did not form any other close relationships with women. I suppose I have always felt like spoiled goods, and have been daunted by the possibility of being rejected because of my HIV status. I had a major crush on someone; but it never went anywhere. That is a whole other long story.  Whatever the reasons, I have remained alone; but I have felt good about knowing I have never infected anyone else. I don't handle guilt very well; so that is something that is important to me.

In 2001, I spent two weeks in hospital with HIV related encephalitis. In fact, I had been very sick for several weeks before I was admitted to the hospital in December; and I went to the Emergency Room during the time my kids were spending that year's Christmas vacation with their mother. Because I had been so sick before that hospital stay, I had not been picking up my mail from my Post Office Box. And I had only been leaving the cabin to go to the grocery store which was four miles away. My kids had assumed responsibility for chopping wood for our wood-burning stove. But when they went to their Mom's for Christmas, I was too weak to do it myself and I was freezing; so I finally went to the hospital.

When I was discharged from the hospital, fours days before Christmas, I swung by the Post Office on my way home and picked up stacks of unread mail. I received a notice from the property management company that had rented me the cabin, informing me that I had failed to renew my lease and I would have to be out of the cabin by the first of the year. Yikes!

I was totally freaking out. I was on disability. I did not have First, Last and a Security Deposit to rent another place. My kids were due back in a couple of days, and it was a mess.

Again, to make a long story short: I ended up putting all of my belongings into a rented storage unit and started sleeping in my van. I explained to my kids that it was a temporary situation, and I would still be seeing them; but they were going to have to sleep at their mom's house full time for awhile. But it was not a good situation. And it only got worse.

My kids were now young adolescents, and I had only just told them about my HIV status when I was in the hospital with encephalitis. I had always thought they were too young to understand before then; and I didn't want to risk their mother using my HIV status against me regarding shared custody or anything like that. The only person who knew I was HIV Positive was my former girlfriend and people I knew from the clinic. I had kept it a secret from everyone else in my life. Most people I am in contact with still do not know about it.

I guess that is why I am making this post. I suppose I just need to air my story and maybe make contact with others who are  in somewhat similar situations; or who can relate.

I spent seven months living in that damned van. And it was not good for my kid's self-esteem; meeting their homeless dad at the park every day after school. But they wee very supportive of me.  Still, it was a bad age for them to be going through all that.

I finally found a place to live; but it is two hundred miles away from my kids. I feel I had no other choice but to take this place. I'm sure I would have died in that van if I continued the way I was going. I've been living here, now, in self-imposed exile for several years.

I'm still close to my kids. We talk on the phone several times a week. And they come for visits, or I go see them; staying at a motel for a few days here and there. I'm lucky they are good kids and have taken it all pretty well. But I feel guilty about not being able to be closer to them. They are 22 and 23 now. And they are both out on their own and have begun their own lives.

I feel like I am just going through the motions regarding life. I go from lab test to lab test. That's about it.

I'm not much of a complainer, but I saw the heading 'Living With HIV'; so I thought I would put in my two cents.

I'm really not a self-pitying person. I just feel really isolated these days.

Offline onemoretime

  • Member
  • Posts: 142
Re: Coping With HIV/AIDS, Age and Isolation
« Reply #1 on: August 31, 2009, 04:49:00 PM »
hey thanks for sharing that,  It is really really powerfull.   i am sorry you had such a hard time.  I am beginning at 5 years go feel isolated, I  have a partner of 9 years,  he is neg and we don't do anything to jeopardize that.    I have been feeling like i should bail so he can be free while he is still young and good looking so he can getou somewone that is not damaged goods... but deep down inside I love him and i don't want to be apart.  I believe we want to spend the rest of our lives togeter... i have HIV and he has immigraiton issues, so we both come with problems.   that is life.   i see the idea of running away to isolation but i geuss that is not the way to go... thanks for helping me with that.  I totally understood your post
08/04 diag 490 cd4 vl 50,000
10/25/05 436 50,513 hvb 1.1 billion
12/13/05 truvada sustiva
02/16/06 742 und, hpb 63,000
04/27/06 740 und hpb 60,000
01/05/07 458 und hvb und
03/08   470 undetectable still on atripla. Non smoking (chantex)
08/08 cd4 550 undetectable hiv, Hep B UND. Atripla
06/09  cd4 444, vl undetectable testo 130
09/09/09 CD4 687 46% UND  Testo 213 started androgel
10/12/09 cd4 682 46% und testo 597
01/12/10 cd4 842 48% und testo 434
041010 cd4 693  53% testo 492
100410 cd4 568 48% testo 523
012711 cd4 523 hcv 56 testo 596
083011 cd4 280 Hcv/HIV und
042912 cd4 158 hcv /hiv und, was on hep c for 11 months. do have ssdi filed and getting LTD
061912 cd4 151, bactrum, hep c and hiv und
071712 cd4 287 52% HIV HCV und
112012 cd4 520

Offline Inchlingblue

  • Member
  • Posts: 3,119
  • Chad Ochocinco PETA Ad
Re: Coping With HIV/AIDS, Age and Isolation
« Reply #2 on: August 31, 2009, 05:08:23 PM »
You sound like a great guy with a lot to offer, thanks for sharing your story. Have you tried the poz personals?

Offline rick21007

  • Member
  • Posts: 286
Re: Coping With HIV/AIDS, Age and Isolation
« Reply #3 on: August 31, 2009, 07:12:39 PM »
Hey---ur post here is a great beginning to break out of the isolation.  Being single, male middle-aged and dealing with chronic illness and not being able to work would  guarantee a life of isolation for any one of us.  I've been there---am grateful to have fully recovered from several illnesses and able to work again but I had several months with a taste of what you describe.

You might think about going to a therapist with the objective of brainstorming together to come up with a life-re-entry plan.  That could look like a lot of things depending on your interests, abilities and personality.

I have a few straight guy friends myself.  I truly appreciate breeders.  We need you to make more of us. ;D  And the truth is the GLBT orgs in this area are supported by more straight men than gay men, sad but true.

Good luck to it!  Rick

Offline mpositive

  • Member
  • Posts: 298
Re: Coping With HIV/AIDS, Age and Isolation
« Reply #4 on: August 31, 2009, 10:27:05 PM »
Wow Puck, I felt that.  I am your mirror image less 20 years.  I got infect last fall and am a very similar situation.  I am straight and feel like a total outsider amongst the HIV community to some extent.  Don't get me wrong either, I love these folks that I am honored to have met.  Here on the forums there are some truly down to earth and genuine folks and out there I have also run into many.
I work everyday, however, then i come home and stay inside where I feel safe and out of the way.  I try not to complain  to those that know me about my feelings, both emotional and physical.  Very few are aware of my status and I need to keep it that way as long as possible.  Unfortunately, what I am missing and what I am envious of you is, you have kids.  The likely hood that I will ever have kids now, well is extremely low and that tears me up inside daily.
Keep up the good fight Puck and good luck with all that you do!
M

Offline skeebo1969

  • Member
  • Posts: 5,707
Re: Coping With HIV/AIDS, Age and Isolation
« Reply #5 on: September 01, 2009, 05:40:14 AM »



  Puck,

     Thanks for sharing your personal story.  You have definitely been dealt a hard hand to play.  I feel some what inadequately positioned to offer any advice, but your story has compelled me to reply anyways.  I will admit your situation is a little different than those I've heard before.  Just growing older is a daunting task in itself, in addition you have HIV, have had battles with OI's, and you are a heterosexual male..

    It must be very difficult for you and I can understand clearly how isolated you must feel.  While I did find your story rather saddening, I also gathered from reading it you are a man who has a lot of fortitude, because brother you've been through a lot. 

    Like Rick alluded to in his post it might be a good idea for you to get some kind of plan together so you can get some sort of normalcy in you life.  You might want to relocate if at all possible to be closer to your kids.  Not necessarily for their sake, but for yours. 

   Today you cannot take back one thing they have seen their father go through, so you must not beat yourself up about it.  It's in the past and you must move forward from any guilt you may carry from them seeing you living in that van.  There is nothing you can do about it my friend other than to move forward. 

   I am a firm believer that our life is what we make of it and we only get one opportunity to live it, so what do you plan on doing from this point? 

Wow Puck, I felt that.  I am your mirror image less 20 years.  I got infect last fall and am a very similar situation.  I am straight and feel like a total outsider amongst the HIV community to some extent.  Don't get me wrong either, I love these folks that I am honored to have met.  Here on the forums there are some truly down to earth and genuine folks and out there I have also run into many.
I work everyday, however, then i come home and stay inside where I feel safe and out of the way.  I try not to complain  to those that know me about my feelings, both emotional and physical.  Very few are aware of my status and I need to keep it that way as long as possible.  Unfortunately, what I am missing and what I am envious of you is, you have kids.  The likely hood that I will ever have kids now, well is extremely low and that tears me up inside daily.
Keep up the good fight Puck and good luck with all that you do!
M

  I understand how you feel but I wouldn't consider myself a total outsider.  I also wouldn't  limit myself to just the HIV community.  I have made a lot of friends at work, I also have told a lot of people I work with about my status and like a long time poster here use to say I took ownership of the virus instead of it owning me.  It was a long drawn out process because I put myself in the mindset that I had something that i was embarrassed of.  But you know what, I started thinking every damn person, dog, cat, and mouse has had sex...... along with countless other species (lol) and I just happend to be unfortunate in that HIV snagged my ass.  What's there really to be ashamed of?  I really don't care what others think and I have not received any negativity from everyone I told.  Couple of weeks ago I used a couple of personal days along with my regular two days off and everyone was nagging me about not keeping them informed because they were worried if I was OK or not.  Just wanted a mini vacation is all.......

    BTW, you can still have kids you know?  My wife, who is also positive, and I have a beautiful 2 year old daughter.  Don't let your age be a factor either, I myself am about to turn 41.  I also met her after my diagnosis.   Dated a few women, but my wife was a keeper for sure....  Us positive guys can have a tendency to have a negative outlook on life, I say to hell with that.  If you feel good right now make the most of the moment....  It truly is up to you....  and the same rules apply for us positive hetero sexual that apply for our negative counterparts in regards to the ladies.  They want to see a confident, shoulders back (in my case with bones showing) guy, who treats them with respect and is not out for one thing.

   I've seen men come on here complaining about their lack of success when it comes to finding that special lady.  When I read deeper into their post their issues have absolutely nothing to do with their pos status.  It has more to do with the man themselves.   A lot of men forget women are people to who have become adults and no longer need a parent telling them what to do.  Hell I don't why should they?  There is not one thing in my household that I would not have my wife do that I myself would also do.  A lot of men treat their women like servants and that stuff played out along time ago.  Not suggesting this is the case with you, but you might want to take a look at some things about yourself. 

   I have had the advantage of being of involved in two divorces , can't believe I just said that but it is the way I feel about it.  In every failed marriage and relationship , instead of becoming bitter about it I really took a good hard look at myself.  I have had some great women who have loved me and in the past I fucked it up.....  but I also learned something from each and everyone of the relationships I have been in.  My wife definitely reaps the benefits from this because all those failures made me a better person let alone a better man.  Now my male bravado cannot be left out of this post, I turned down a beautiful Jamaican woman's advances just because she was a little to uppity for my tasted.  But man let me tell you this girl was absolutely gorgeous, but ole Tom had changed I wanted substance and that is exactly what I got from my beautiful wife I have now.

  Who knows I could leave this world tomorrow, but right at this moment I am alive and well I ain't gonna waste it..  with any negative thoughts or vibes.   I am only on this earth one time, although it would be cool to come back as a male rabbit. You guys have to remember also there are a lot of poor souls out there who are negative who are just as alone and some of this is of their own actions.

So which do you want to be?  I gather from your previous post that you would like to find that specail someone, but you have to be special; to yourself first.

Just my two cents on the whole matter.  I came from the same low point in life that both you and Puck are now in and I scratched and clawed my way back into life...  with a lot of help and support from the people on these forums.   I say embrace the challenge just like any other, winning will really give you a different perspective on things.

I can't quote Moffie verbatim, but take ownership of this disease and don't let it own you.  If some people want to distance themselves because of something I got that they have even put themselves at risk for......than I say to hell with em, they're not worthy of my friendship anyways.

Puck welcome to the forums, I hope you stick around and share more.
I despise the song Love is in the Air, you should too.

Offline Puckslinger

  • Member
  • Posts: 57
Re: Coping With HIV/AIDS, Age and Isolation
« Reply #6 on: September 01, 2009, 09:47:46 AM »
Thanks for the thoughtful and supportive messages people.

onemoretime: I would suggest you think long and hard before you bail on someone you truly love. The change may provide a temporary release from the pressures of your relationship; but, if you cut yourself loose, the change--long term--may prove to be more than you bargained for. And if your partner 'moves on', then there is no going back. I appreciated your quick response to my post.

Inchlingblue: Thanks for the supportive words. I tried Poz Personals very briefly, got a response from someone that was obviously a crank, and immediately hid my profile. I guess I was feeling a little too emotionally vulnerable, at that moment, to deal with jokers or crackpots. I'm not usually as sensitive to people's responses; but, at that particular moment, I was not feeling like I wanted to cope with any games and/or abuse.

I'm a little technologically challenged when it comes to providing a photo; but, I plan to get my Poz Personals profile together in the future. I would like to be feeling more like my normal self i.e. self-assured, optimistic and ready-for-anything before I make a serious attempt at finding a woman. I didn't just start posting here because I am merely looking for love. My feelings of emptiness are something more than I can easily describe. And I don't suppose I would seem very attractive to anyone when feeling so down in the dumps. I will get it together though. And I appreciate you saying I sound like I have a lot to offer.

Rick: Thanks for the suggestion about brainstorming with a therapist. I tend to try to work out my problems on my own; but I liked your idea about a 'life-re-entry plan'. Man, that sounds just like what I need: A life-re-entry plan. I will give the therapist idea some thought. Your sense of humor regarding 'breeders' made me smile. Thanks.

mpositive: Thanks for letting me know you are feeling like we are in the same boat. I don't know if I would have been motivated to really take care of myself when I first tested positive, if I had not had to get up every day for my kids. If you are really feeling like you need to be parenting, you might want to consider helping out a kid who needs a foster parent; or even possibly adopting. Just an idea. I know a lesbian couple who wanted children, and they adopted an unwanted child from a Rumainian orphanage several years ago; and that little girl has blossomed into a beautiful, gifted young woman. I have often wondered where, or how, she would have wound up if she had not been adopted by those two women. When I expressed that thought to one of the women, one day, she said, 'Who knows how we would have wound up if she hadn't come into our lives.' If you are feeling at a loss because you won't have your own biological offspring, I sympathize. As I've suggested, my kids were life savers.

skeebo: I appreciate you reminding me that I need to get it together and move forward from here. As I said to Rick, that idea about a life-re-entry plan sounds just like what I need. I will take your advice to heart, and try to stop beating myself up about things that are in the past. Thanks for taking the time to share your thoughts and for understanding how isolated I feel; and for welcoming me to the forums. I will try to stick around and share more in the future.

Offline rick21007

  • Member
  • Posts: 286
Re: Coping With HIV/AIDS, Age and Isolation
« Reply #7 on: September 01, 2009, 01:27:15 PM »
Puckslinger--the thing is the longer we live the more mistakes we all find we have made in the past.  That's just being human.  While we can't go back and change anything in the past we do have the choice either to continue to beat ourselves up or to learn to be non-judgemental, understanding and compassionate toward others who are less than perfect.

Rick

Offline Puckslinger

  • Member
  • Posts: 57
Re: Coping With HIV/AIDS, Age and Isolation
« Reply #8 on: September 01, 2009, 06:29:09 PM »
Thanks, Rick.

 


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.