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Author Topic: Painful topic  (Read 2919 times)

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Offline phillypinko

  • Member
  • Posts: 112
Painful topic
« on: September 11, 2013, 12:57:57 AM »
 I tested positive in 1992 three years through a bachelors degree. I dropped out and focused on enjoying the time I had left. I basically retired at age 20. I spend a lot of time thinking about what might have been if only practiced safe sex. Does anyone else feel ashamed of having HIV? Its taken 20 years for these feelings to come to the surface. I didn't die but wish I did sometimes. I've never amounted to anything and probably never will. I feel like I am a constant source of shame and embarrassment to my family. I also am bipolar so my options are really limited. I live on the minimum on disability and have a life of being old, poor and sick to look forward to. My point is that HIV didn't kill me physically but it did damage that is really just catching up to me now twenty years later. It is an ongoing life long trauma.

Offline weasel

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  • Posts: 1,727
Re: Painful topic
« Reply #1 on: September 11, 2013, 09:23:28 AM »


   Hi PhillyPinko ,
                            It's nice to meet you  :)

     Those are some deep questions . I have at times looked back and talked
to my self and said things like :  " Gee you threw away a four year full scholarship "  , because I was so  out of my mind . I worked hard to get where I was going and when I arrived I was like it that all there is to a scholarship  :-[
  I am lucky the road I traveled allowed me to swing up and down , as the Mind swings to flying high to dragging the pits of hell .
  I hope You try to be happy , You'r still very young . I know nothing of your health   .   But if you are not terrible sick now I will assume you will be that way 5 years from now . That has been my goal with HIV / AIDS , to assume in five years I will be in the same shape and go from there !
  As for feeling you are a shame to your family ?   I'm thinking your low self esteem is playing on that , unless they are telling you otherwise .
  Do I feel ashamed of having AIDS  ?   YES I DO !    Nothing can bring back the carefree days of not having a BUG that screws up the Body and Mind ! You are not alone on that !  If people wish to pretend they do not have HIV , Yes I may be accused of that at times , I try not to dwell on the past , and If I do I work on remembering what was good ! No need to dwell on crap , sorry ,it's the way it is !
  As for amounting to anything , I worked 60 hours a week until my husband of over thirty years (  NON - POZ )  moved to a very secluded Ozark Mountain town , Pop. 57  :o
  I used to feel I was in control , We could do whatever we pleased , now I'm Thinking if I chop a tree down and make firewood I have had a full and great day !  It is all in perspective . I have relatives  and a few friend that are the 1% and I find them really to have the same issues I do .
 So after more than 30 years with HIV I still do not think it ruined my life ! I do think possibly being bi-polar ,And I do not like to use that because mood swings IMHO are more of what we do not do , I.E. exercise , Get out and see people , enjoy what we see etc.   
  I hope you are seeing a psychologist or other form of GOOD ways to talk to people that listen !   A day with a person that can absorb your feeling is a day of sunshine ! 

                                  Be well , Weasel

  P.s.  Feel free to PM me , I love to chat  :)
" Live and let Live "

Offline socalpoz

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  • Posts: 80
Re: Painful topic
« Reply #2 on: September 11, 2013, 09:28:48 AM »
Philly,

I am not really sure what to say, but I can relate to the shame/blame game. In my case I have had many friends who I had already lost to this disease and I knew all about safesex, to make matters worse I was in a longterm monogamous relationship (but I was not being monogamous). Not only did I become positive, I lost my best friend and husband.

I guess what I am trying to say is yes it's hard, but to quote someone else on this forum (I don't remember who it was but the words give me some comfort, so to paraphrase) "we are all humans full of flaws". So give yourself a break, as for feeling like you have never accomplished anything you have fought this disease for 20 years, quite an accomplishment!

I will also add I am a firm believer that it's never to late to follow your dreams. I recently went back to school and became a nurse (I had always wanted to be a doctor but at my age compromised) that after over 20 years of first starting at the university, also one of my fellow classmates who truly inspired me was 70 and did the same thing.

Big HUGS to you my friend I hope these feeling pass!

Diagnosed Jan. 22, 2011
feb/11 cd4 547, cd4% 37, vl 527
mar/11 cd4 650, cd4% 37, vl 97
may/11 cd4 698, cd4% 37, vl 303
jul/11 cd4 744, cd4% 39, vl 239
aug/12 cd4 675, cd4% 39, Vl 42
Jun/13 cd4 594, cd4% 38, Vl 1860
Jul/3/13 started Stribild
Aug/13 cd4 758 cd4% 43, vl ??

Offline Andy Velez

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Re: Painful topic
« Reply #3 on: September 11, 2013, 10:12:23 AM »
Philly, you can't undo the past. And knowing that can be painful to see and to accept.

But you do have now, today. Even in very poor circumstances financially it might be possible for you to get some education and improve your circumstances. There are agencies and other sources available to you if you are willing to reach out. Believe me, you're not by a long stretch the only guy in such circumstances. Don't think about it too much. Reach out to AIDS Service organizations for instance and see who might be able to help.

My guess is you are still a relatively young guy -- 40 or so right? Man, you can have a lot of great time ahead of you. Reach out, reach out!

Keep us posted on how it's going.
Andy Velez

Offline moxieinme

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  • Posts: 91
Re: Painful topic
« Reply #4 on: September 11, 2013, 10:16:32 AM »
Hi Philly,

Thanks for taking time and having the courage to write. All your concerns are valid.

It made me reflect on whether I myself regret or feel shame about HIV/AIDS. I can't honestly say I live feeling regret. Although I tend to be discreet about sharing my HIV status and how it has affected my life, I am not ashamed.

I was diagnosed HIV+ in '89, in my late 20s. I didn't know how much time I had. Before then I had already dropped out of college (music) because I wasn't sure what route I wanted to take, and had gone out at found a new career elsewhere.

After HIV worked long and hard, mostly to make sure I had good health coverage and LT disability coverage (which I eventually needed). I also found my way back to my first love, and regained professional status in that area. Ultimately I went on disability from my second career. But I have been able to continue and come full circle with my first love and area of specialty. And through all this I've been through the ringer with HIV, health effects and drug regimens.

My point is, I have regrets about lost opportunities, either because I held myself back because of my own perceived limitations, or the real effects of HIV. Every human being has regrets about what they did or didn't do. EVERYONE does, HIV or not.

But I can't live with regret about being positive. It is a fact of life. It has changed who I am and what I do with life. But I have had remarkable experiences when I let myself go and be hopeful and happy and explore.

As Weasel pointed out, you are fortunate to have good treatment options. Take advantage of your youth and resources if you can. Look, you probably won't have a lightbulb moment when it all becomes clear to you, but know you are OK, you have a life to live, and you have a world to explore. Be gentle with yourself.
Salvage therapy wrangler, riding the poz bronco and dodging bullets for over 24 years.
- - - - - - - - - - - - - - - - - - - - -
CD4 at diagnosis 1989 = 330
Began treatment (AZT) 1989
Lowest labs 1998: CD4=74, 7%, VL=750,000
First sustained undetectable VL in 20 years (2009); CD4=315
Current labs (12/13): CD4=637, 27%, VL=<20
Current meds: Prezista, Isentress, Intellence, Norvir

Offline aaware72

  • Member
  • Posts: 226
Re: Painful topic
« Reply #5 on: September 11, 2013, 10:20:42 AM »
Hi,

Granted I was only diagnosed this past January, however those thoughts of being ashamed, embarrassed, scared, and the feeling of being toxic at least for me were felt right always.  My partner and I found out within two weeks of each other.  He was my biggest supporter and helped me deal with these feelings as I did with him.  We still have our bad days.  I feel really lucky to have my partner by my side.  I’m not sure how I would of coped if he was not there. 

I understand the difference between being diagnosed in the 90’s and today.  It is not a death sentence today, however this virus still takes some.  I was in my 3rd year of my undergrad when I found out with plans on working on my JD in the fall of 2014.  I am 41.  I still have my own issues as I have some problems with my mind.  I sometime get in a daze when I cannot remember things, I cannot think, and I unable to function and do my school work.  I have spoken with my ID about this in August and he tells me it is not a side of the medication, but that this virus is in my brain and this what I am experiencing.  I have two choices here.  Let this virus paralyze me and withdraw or fight and not let this overcome me.  It’s hard some days and I cry as I am as I write this.  I have always been really had a sharp memory and it scares me that some days I cannot function. When I get in a conversation with someone and I know what I want to say, but I cannot remember or process the information.  It scares me and I worry that I am going to lose my mind.   But I move on, move forward, and accept the challenges, because only when we accept these challenges can we have the opportunity to succeed. 

I will graduate and walk this coming spring with my undergrad at the age of 42 and thus far have been able to still get my work done and keep my grades up(all A’s).   I have just started to complicate what to do after.  I could move on and work on my JD; however I would be taken on a huge amount of debt and would need to make some serious amount of money to pay it back. Now I technically live in poverty and the state pays for all my heath care expenses and my medications.  I worry if I go out and make a living again what does that mean to me.  Will I lose coverage; will I be able to afford these medications?  I think we all have different worries and concerns.

I know one thing I do not want to do is die and I want to live life.  I will not let this virus dictate who I am and what I want to do.  Hindsight is great.  We should of, could of, but guess what it doesn’t matter you cannot change the past.  Learn from it and move on.  Hey maybe share your mistakes to people at risk so they don’t make the same mistakes.  If anything I feel all the challenges and hardships I have endured over the past several years has made me stronger.  So with this experience and I have started to hear a calling I just need to work of my courage to be able to be that advocate that I know I can be. 

So you say you have 3 years done on an undergrad?  Why let those credits just sit there and do nothing?  Go back to school, finish your degree.  You might think or say I cannot but you never know until you try.  Just remember you would be doing this for you not your family or friends.  Do it for you.  Don’t worry what other think.  Find something that make you happy and do it.  Sorry for the rant…
« Last Edit: September 11, 2013, 10:27:18 AM by aaware72 »
"Yes, knowledge is power. Self-knowledge brings mastery of one's body."

Online mecch

  • Member
  • Posts: 12,183
  • red pill? or blue pill?
Re: Painful topic
« Reply #6 on: September 11, 2013, 10:27:56 AM »
.... I dropped out and focused on enjoying the time I had left. I basically retired at age 20.
..... I've never amounted to anything and probably never will. .....
.... I feel like I am a constant source of shame and embarrassment to my family....
.... I also am bipolar so my options are really limited.

Maybe you can look at some of these things from a different perspective...
First of all, dropping out of college.  Tons of people drop out. Tons of people never go...  Clearly it hurt your ego and I can guess you feel it hurt your ability to have a "good job" and take satisfaction from that sphere of life. But also it was a long time ago and plenty of drop outs and never wents have working lives they feel good about.
So, on to the next two points...
Dunno if you feel like sharing some more.  What did you do for twenty years since??  You said you decided to have a good time. Did you have a good time some of those years? Thats something after all! 
About the family, is it two things. I hear that YOU feel that you shamed your family.  Thats a real feeling. What about the family, over the years, did THEY shame you? 
Finally bipolar.  Again, don't know if you feel like sharing... Have you pursued medical and/or therapy for the bipolar state.  If so, was anything helpful, constructive?  Are you feeling in control of this nowadays?  I know just a few bipolar people. The experience runs the gamut from not being able to work at all, for the long term, and considerable challenges living daily life. To another person who functions pretty well and has learned over time and experience all the workarounds to living with the condition but still living well enough...
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline phillypinko

  • Member
  • Posts: 112
Re: Painful topic
« Reply #7 on: September 12, 2013, 02:08:28 PM »
Maybe you can look at some of these things from a different perspective...
First of all, dropping out of college.  Tons of people drop out. Tons of people never go...  Clearly it hurt your ego and I can guess you feel it hurt your ability to have a "good job" and take satisfaction from that sphere of life. But also it was a long time ago and plenty of drop outs and never wents have working lives they feel good about.
So, on to the next two points...
Dunno if you feel like sharing some more.  What did you do for twenty years since??  You said you decided to have a good time. Did you have a good time some of those years? Thats something after all! 
About the family, is it two things. I hear that YOU feel that you shamed your family.  Thats a real feeling. What about the family, over the years, did THEY shame you? 
Finally bipolar.  Again, don't know if you feel like sharing... Have you pursued medical and/or therapy for the bipolar state.  If so, was anything helpful, constructive?  Are you feeling in control of this nowadays?  I know just a few bipolar people. The experience runs the gamut from not being able to work at all, for the long term, and considerable challenges living daily life. To another person who functions pretty well and has learned over time and experience all the workarounds to living with the condition but still living well enough...
I spent the last 20 years living like there was no tomorrow. I have travelled the world and been all over the U.S. I am basically an aging playboy. I travelled with older men and with my softball team. Now that I am 41 I kind of feel like a useless over the hill bum. I have no idea what im going to do with the rest of my life. Treatment for bipolar disorder has not done much. I have had years of relative stability but am not doing well now. I have a new psychiatrist who is trying to convince me im not bipolar but have PTSD. I think PTSD is the new sexy diagnosis and this doctor has no idea what she is talking about. Its kind of confusing to have doctors tell me im bipolar for 15 years then suddenly im supposed to accept I have PTSD.

Offline anniebc

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  • Posts: 5,956
  • AM member since 2003
Re: Painful topic
« Reply #8 on: September 12, 2013, 05:42:31 PM »
Hi Philly

Don't be in a rush to dismiss PTSD, you may have Bi-Polar but you could also be going through PTSD.

PTSD is not just experiencing a death of a loved, a natural disaster or witnessing a fatal car crash as most people put it down to, it could be that after 20 years of having fun you now feel you have suddenly come to a grinding halt with nothing to do with your time except think about the past, in other words Re-experiencing the day you were diagnosed, the shame you felt back then, and how things could have been different.

Just thinking out aloud here but it could be a possibility, talk to your Doc again and just ask them to explain a bit more as to why they now think you are suffering from PTSD.

Keep us updated and let us know how you get on.

Aroha
Jan
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Online mecch

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  • red pill? or blue pill?
Re: Painful topic
« Reply #9 on: September 12, 2013, 05:44:11 PM »
That would be frustrating to have a diagnosis change, on the other hand, maybe its a sign to you that you can shake up your definitions and opinions of yourself. Time for reevaluations..
How you spent two decades seems pretty fine to me.
If you want to settle down now, or need to, it won't be impossible. I am sure you picked up some flair for living its just a matter of finding the niche if the next step is a steady job.  Maybe something in hospitality or maybe in the travel industry... 

We can't go back in time, every age has its transitions. 

40 isn't 25.  But its not 65 either...   You have a lot of time ahead.  And isn't there someway you can value those two decades of being a free spirit, and move on?

As for therapy, diagnosis is one thing but the most important part is - what is the treatment?  Does the shrink have a plan and how is it working and are you optimistic about it, or not.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Mishma

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  • Posts: 190
    • Marquis de Vauban
Painful topic
« Reply #10 on: September 12, 2013, 06:08:56 PM »
We hear you. Some great advice from others, about the only thing I can add is that we all have regrets in life, myself included. The trick is for you not to ruin your life over the them. Easier said than done.

PTSD is a distinct possibility-I agree with Anne. A Bi Polar diagnosis is something I take with a grain of salt. Many of us were given it (the diagnosis) well past the age where it would normally manifest itself, which brings me to question our true understanding (or lack thereof) of the neurological complications of HIV.

For tx/therapy I'd take talk therapy over drugs any day, given a choice.

2016 CD4 25% UD (less than 20). 27+ years positive. Isentress, Truvada, Acyclovir, Clonazepam, Zolpidem, Bupropion, Lisinopril, Pravastatin, Quetiapine, Doxcycline, Testosterone, Suatriptan/Naproxen, Restasis, Dorzolamide, Latanoprost, Asprin, lortab, Levothyroxine, Fioricet, Restasis, Triamclinolone, Nitrostat.

Offline phillypinko

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  • Posts: 112
Re: Painful topic
« Reply #11 on: September 12, 2013, 06:59:35 PM »
That would be frustrating to have a diagnosis change, on the other hand, maybe its a sign to you that you can shake up your definitions and opinions of yourself. Time for reevaluations..
How you spent two decades seems pretty fine to me.
If you want to settle down now, or need to, it won't be impossible. I am sure you picked up some flair for living its just a matter of finding the niche if the next step is a steady job.  Maybe something in hospitality or maybe in the travel industry... 

We can't go back in time, every age has its transitions. 

40 isn't 25.  But its not 65 either...   You have a lot of time ahead.  And isn't there someway you can value those two decades of being a free spirit, and move on?

As for therapy, diagnosis is one thing but the most important part is - what is the treatment?  Does the shrink have a plan and how is it working and are you optimistic about it, or not.
This is the part that is kind of funny. My therapist says there is an 8 week treatment that has a 90% success rate. I had to bite my lip to stop from laughing. I said to her "You expect me to believe there is an 8 week program that can reverse 20-30 years of ingrained thinking patterns?" She became defensive and asked if I wanted to leave therapy. I told her I would try the therapy and we can re=evaluate where I am in 8 weeks. WHATEVER!

Offline Joe K

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  • 31 Years Poz
Re: Painful topic
« Reply #12 on: September 12, 2013, 08:13:07 PM »
Hey Philly,

I'm with Jan, in that you could very well have PTSD in addition to being bi-polar.  I suffer from major depression and a few years ago, I started to have the most vivid and horrible dreams of the early years.  I'm talking mid-80s on and after a while, I even found myself have waking flash-backs.  Soon after that, I was diagnosed with PTSD and I went through therapy that helped me to replace those horrible scenes, with memories of better times.

The disease can manifest itself in varying degrees, so you may want to consider it.

The only other advice I have is to give yourself a break.  You are not the first one to have taken a break from life after diagnosis and the fact that you seemed bored is a good reason to start a new chapter in your life.

I caution you about viewing your life, solely based on your past.  What's done is done and it didn't make you into some horrible person, so stop casting yourself as having done nothing, when that is not the truth.  You are young and you have many decades before you, so maybe stop the pity party and start planning your second act.

Joe

Offline Michelle25

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  • Posts: 10
Re: Painful topic
« Reply #13 on: September 12, 2013, 08:18:59 PM »
hi sorry to hear u are feeling like this. i was diagnosed this year January 25th with HIV and felt like u too. some days are good most days are bad but i have to keep going some how. i think we beat ourselves up more than others. i know u have being living with this much longer than me but don't give up. xxxxx

Offline phillypinko

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Re: Painful topic
« Reply #14 on: September 12, 2013, 11:10:11 PM »
Hey Philly,

I'm with Jan, in that you could very well have PTSD in addition to being bi-polar.  I suffer from major depression and a few years ago, I started to have the most vivid and horrible dreams of the early years.  I'm talking mid-80s on and after a while, I even found myself have waking flash-backs.  Soon after that, I was diagnosed with PTSD and I went through therapy that helped me to replace those horrible scenes, with memories of better times.

The disease can manifest itself in varying degrees, so you may want to consider it.

The only other advice I have is to give yourself a break.  You are not the first one to have taken a break from life after diagnosis and the fact that you seemed bored is a good reason to start a new chapter in your life.

I caution you about viewing your life, solely based on your past.  What's done is done and it didn't make you into some horrible person, so stop casting yourself as having done nothing, when that is not the truth.  You are young and you have many decades before you, so maybe stop the pity party and start planning your second act.

Joe
You're right. I read my post and realize I am having a bit of a pity party. I wrote a story about what the last 20 years have been like. A friend of mine did the first edit last week. I am tuning it up and will eventually submit it to amazon publishing. These mood swings are all a part of bipolar disorder. In the morning I think everything is hopeless and by dinner time I think I am going to be a best selling author.

Offline Theyer

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  • Current ambition. Walk the Dog .
Re: Painful topic
« Reply #15 on: September 13, 2013, 05:03:34 AM »
Dear Philly,

From my experience 40 is a very differcult time for all who have been professional athletes. Your writting seems an excellent way to deal with/make use off the are,s off life that you are concerned with . Regret/independence/family/ loss  . As Meech kind off said travelling the world does not seem exactly top off the list when one is considering a useless life.

I agree that PTSD is the new sexy diagnosis ,as was bipolar, however this could be because it fits the circumstances folk are presenting to there therapists .

As a last thought , I think you sometimes make the mistake off considering your 20 year old self only from the standpoint off 40, can you not give that 20 year old a break.

Best Wishes
m
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Souledout

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Re: Painful topic
« Reply #16 on: September 14, 2013, 04:20:38 AM »
Also, with regards to starting treatment - your mind set is as key as the treatment itself. You decide it won't work for you and guess what? It won't. It'll be a self fulfilling prophecy and you'll be back at square one, but with a more ingrained view that nothing will work for you because you're always in that few percent who don't respond to anything. Break the cycle, easier said than done I know.
Infection sometime April-August, no noticable seroconversion symptoms
Not currently on medication
13/09/12 CD4 672 (33%) VL <40 (diagnosis date)
18/09/12 CD4 ?               VL 43
27/09/12 CD4 ?               VL 127
19/11/12 CD4 676 (38%) VL 959
03/03/13 CD4 642 (32%) VL 291
04/07/13 CD4 791 (33%) VL 26,437 (active cold sore, tooth infection)
18/07/13 ------retest------VL 3704
18/11/13 CD4 802 (36%) VL 65

Offline phillypinko

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  • Posts: 112
Re: Painful topic
« Reply #17 on: September 16, 2013, 10:18:53 PM »
Dear Philly,

From my experience 40 is a very differcult time for all who have been professional athletes. Your writting seems an excellent way to deal with/make use off the are,s off life that you are concerned with . Regret/independence/family/ loss  . As Meech kind off said travelling the world does not seem exactly top off the list when one is considering a useless life.

I agree that PTSD is the new sexy diagnosis ,as was bipolar, however this could be because it fits the circumstances folk are presenting to there therapists .

As a last thought , I think you sometimes make the mistake off considering your 20 year old self only from the standpoint off 40, can you not give that 20 year old a break.

Best Wishes
m
You're point about giving the 20 year old a break is a good one. He really had his plate full. The story I have written covers everything he went through. It was more then most grown men could handle.

 


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