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Author Topic: I'm not dead, so now what?  (Read 5744 times)

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Offline Joe K

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I'm not dead, so now what?
« on: July 31, 2009, 08:09:29 PM »
I tested poz in March of 1985 and back then, we knew we would hardly live a few years, let alone 25 with HIV and so I could never imagine my living past the age of 50.  I just turned 55 and have come to realize that I will most probably live quite a few more years, but I never planned for this to happen.  I suppose I became so obsessed with staying alive that I never thought much about it, but now I am living it and I don't know what to do.  While I have major depression issues, this time, it is just not the same.  It is not that I do not feel, it is that I seem to have lost my way and I need some insight.

At times I feel so tired, because even though I have lived this long, it has not come without a price and one very dear at that.  I am sick and tired of being sick and tired and sometimes I see death not as something to be feared, rather as a option to obtain relief for this Twilight Zone.  I have my health, a good man who loves me and dear friends, yet I find little pleasure in any of this and I want to understand why.  I need to understand why, because to be honest, I just do not know where to go from here.

Offline RAB

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Re: I'm not dead, so now what?
« Reply #1 on: July 31, 2009, 09:35:17 PM »
I tested poz in March of 1985 and back then, we knew we would hardly live a few years, let alone 25 with HIV and so I could never imagine my living past the age of 50.  I just turned 55 and have come to realize that I will most probably live quite a few more years, but I never planned for this to happen.

You know what Joe, I suspect there is a large army of HIV + individuals in the exact same boat.  We were told we had 6/8/12/24 (fill in the blank) months to live, we were told to go home and get our affairs in order.
We coped with that the best we could.  We cried, we planned, we hoped and we prayed. 

Quote
I suppose I became so obsessed with staying alive that I never thought much about it, but now I am living it and I don't know what to do. 

Boy does that ever hit home with me.  At the time, I was grieving the loss of friend after friend, I was also fearing my own immortality.  And like you, I'm not sure what to do now.

I take a rather simple approach.  It's the only way I can survive, maintain my sanity, and allow myself to move forward, because as you so aptly said, "I'm not dead".

So what is that approach?

I try really hard on a daily basis to:

1.  Acknowledge those things I have no control over and let go of them.  But refuse to let go of anything else.

I can't change the fact I'm HIV +, I can't erase the trauma so many of us experienced, but what I can do is acknowledge it, respect it, but not allow it to distract me from today.

2.  The other thing I try really hard to do is stay focused on today.  I have a very bad habit of dwelling on the past and worrying about the imagined future.  I've realized neither is a healthy place for me to go.

If I stay focused on the here and now, I'm a much happier, healthier, and balanced person.  Though lord knows it can be a daily struggle.

RAB

I know I only responded to portions of your post, but they were the portions I felt I had the most to offer.


 

Offline Texan38

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Re: I'm not dead, so now what?
« Reply #2 on: July 31, 2009, 11:04:02 PM »
Joe,

I would like to say that I read you post with a heavy heart.  I saddens me to hear you're currently in a 'Twilight Zone'.  You always give such wonderful, thoughtful advise and the strong support you give is not only encouraging but absolutely admirable.
I'm sorry you're going through a bump in the road and that's what it is just a bump.  Even though we have never met (and will probably never meet), your words have always had a heartwarming affect on me.  I apologize for not having to much advise for you or not having any answers you seek but I simply want you to know how deeply moving I always find your posts and how much your words have actually gotten me through some emotional times in the past.
You're a good man with a good soul. 
 
Take good care of yourself.
In Hollywood an equitable divorce settlement means each party getting fifty per cent of publicity.
~ Lauren Bacall

Offline Giblarry

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Re: I'm not dead, so now what?
« Reply #3 on: August 01, 2009, 08:52:11 AM »
Man Joe,

I'm sorry to keep harping on this.  But ...

I always suggest finding something to help you step outside yourself while putting your troubles on a shelf where they don't quite eat at you so much. 

I do it through volunteering at my local ASO, but your church if you have one, or there are many, many other opportunities.  And, by being a volunteer, as opposed to an employee, you can tailor your work to fit your energy. 

In this way, the you is drawn out of yourself by being in service to something larger than yourself.  Soon you find you don't dwell on your predicament quite so much, and a sense of 'something' replaces the 'nothing.' 

BTW, I've been positive since about 1980 with FB AIDS since 1994 so, I just ain't talking through my hat. 

Very best and good luck - doggone it!  You deserve it.

Gib

Offline bear60

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Re: I'm not dead, so now what?
« Reply #4 on: August 01, 2009, 10:29:20 AM »
I hear you Joe. 
You are not alone in this feeling of "being lost", you know. 
I wish you well.

Joel
Poz Bear Type in Philadelphia

Online BT65

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Re: I'm not dead, so now what?
« Reply #5 on: August 01, 2009, 10:50:32 AM »
Joe, I totally understand what you mean.  I often times feel the same way. 

I really agree with what RAB says about staying in the day, and not projecting.  I tend to project a lot, (a hell of a lot), and that only makes me crazy.  And I'll project about shit that may not ever happen, (sounds crazy I know).   Letting go of things I have no control over is a good idea too.  It's hard for me to do, though.  But a good idea.

I also like what Gib said about volunteering.  I've been doing that for a place who helps people with utility bills, back rent etc. and it does help me get out of myself, see what others are going through, and get a good perspective.

One thing I try to do is set goals.  Even if they're little goals, like getting my apartment cleaned, I try to do something each day; a "good" something.  Heck, it could be just catching up on some reading.  And at the end of the day, I try to take inventory of what happened and see if there's ways I need to improve my actions and attitudes.  That doesn't mean I think I'm perfect; far from it.  But it does help me anyway.

Hang in there.  I'm with ya.
  Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline denb45

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Re: I'm not dead, so now what?
« Reply #6 on: August 01, 2009, 10:56:55 AM »
Joe.......I feel ya....it get even more difficult the older you get..I'm going to be 53 in NOV 2009, and, after 22 yrs. of having AIDS, it get's even harder for me  ??? the good thing in all of this, joe, you know your not alone here  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Online Miss Philicia

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Re: I'm not dead, so now what?
« Reply #7 on: August 01, 2009, 01:08:25 PM »
post traumatic stress disorder -- that's what I chalk it all up to.  Makes sense if you think about it.
"Iíve slept with enough men to know that Iím not gay"

Offline Lisa

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Re: I'm not dead, so now what?
« Reply #8 on: August 01, 2009, 02:34:27 PM »
Mr. K.
I knew I had always had an affinity to you.
While you all can attest to.........I have been a conflicted person for a while now.
Our histories' are not terribly divergent, you and I.
It seems to be a different trigger, but a similar response for me.
I would so love to spend some time with you.
I have developed some very simple basics that I have built on.

We need to look for a smidge of humor, or irony each day.
Mable lives with me and deserves singular attention more than a few minutes each day.(Please expand this process to incorporate your experience.)
Yesterday is gone.
Anything can happen til tomorrow.......
I'm lovin' just being HERE, NOW.
Sure wish I was on my way to Boston tho.....

I have been learning how to love and luxioriously enjoy where I am.

No Fear  No Shame  No Stigma
Happiness is not getting what you want, but wanting what you have.

Offline allanq

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Re: I'm not dead, so now what?
« Reply #9 on: August 01, 2009, 03:20:38 PM »
Joe,

I have been dealing with chronic depression ever since I can remember. I go through periods when I'm feeling just fine, and then even a small setback can send me back into the depths of depression.

You've always been very helpful and supportive to other people who are dealing with depression, so I feel especially bad that you're once again finding yourself back in the hold of depression.

I know what you mean by being sick and tired of feeling sick and tired. I think this feeling contributes to a cycle of depression. You're tired, so you don't feel like doing anything, which further depresses you. Depression itself drains you of energy and feeds on itself.

I hope that you'll make it to the AMG. I think it might do you some good to break your routine and be around old friends for a few days.

Good luck,

Allan
Top (Breakfast): Prezista, Norvir, Isentress, Zoloft (2), Glyburide (2), Aspirin
Bottom right (Dinner): Prezista, Norvir, Isentress
Bottom left (Bedtime): Sustiva, Trazodone (2), Lipitor, Septra (no longer taking this)
Center: Alprazolam (Xanax)
Not shown: various vitamins & supplements

Offline denb45

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Re: I'm not dead, so now what?
« Reply #10 on: August 01, 2009, 05:51:09 PM »
post traumatic stress disorder -- that's what I chalk it all up to.  Makes sense if you think about it.

Among other health issues, that one seems to be a real problem for me the older I get, I'm back on the
Lorazepam (Adavan) again after a short 3 month break, and it get's even harder to even get this form my ID Dcotor.(she keep telling me , that is not her expertise) but, she does understand about the PTSD  ???

Joe please forgive me for the highjack......and my endless rants, however you sound to me like your holding up well, at least us AIDS patients have developed good coping skills throughout the yrs. we all had to deal with this , but, I admit, sometimes I need a little help ;)
« Last Edit: August 01, 2009, 06:01:34 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline mjmel

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Re: I'm not dead, so now what?
« Reply #11 on: August 01, 2009, 06:37:23 PM »
Hi Joe.

http://forums.poz.com/index.php?topic=24308.0

Waiting to greet you. soon.

Mike

Offline Joe K

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Re: I'm not dead, so now what?
« Reply #12 on: August 01, 2009, 07:11:36 PM »
Thanks everyone and Miss P gets a cyber kiss for suggesting PSTD.  I spent the afternoon reading about it and at first, I did not think it applied to me, until I read a story on PSTD in the military.  By substituting losing friends, to the loss of my home and cars, etc., I just never saw that as enough to trigger it, mainly because I always believed that PSTD was the result of some kind of violence, captivity or abuse.

As I read the clinical descriptions, every feeling and symptom that I have been experiencing was there.  The horrible guilt that so many died and I could do nothing.  The hopelessness of it all and it just kept going on for years.  The fact that even with modern HIV treatments, I still lose someone each and every year.  I found an old term for it: shell shock and I think that says it all.  With all the stress of the past five years and now that I have been able to somewhat decompress in Montreal, I think all of it is finally catching up to me.

I wonder how I knew this would happen, as I made an appointment with a psychiatrist and psychologist, two months ago, for this past week, for no particular reason and I sure need them now.  Reconnecting at AMG will also help, if nothing else, it will divert attention away from myself and maybe I can really relax for a weekend.

I have more, but not right now...

Offline AndyArrow

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Re: I'm not dead, so now what?
« Reply #13 on: August 02, 2009, 03:42:43 AM »
Amazing the way the mind works, you make the appointments not thinking you need them when your subconscience knew you did.

I hope you can find some relief from this latest bout of depression.  I suddenly have a lot more on plate and was just thinking I need to schedule an appointment with my therapist soon.

PTSD I always think of as the Scarlett O'Hara Syndrome.  Everything becomes too overwhelming and you just decided that you'll think about it tomorrow and then unfortunately after too many tomorrows they just come flooding back.  (Rather simplistic I know ... but I somehow manage to relate everything to an old hollywood classic).  ;)

Everyone has given such good advice and you know it all already so I really don't have anything to add but my wishes that you come through this bit of darkness quickly so you can really enjoy your new life in The True North!

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline Moffie65

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Re: I'm not dead, so now what?
« Reply #14 on: August 02, 2009, 06:48:14 PM »
Hi Joe and all the rest of you. 

Gee, this thread sure was timely for all of us.  I had no idea just how many of you were dealing with the same thing that has haunted me for the last so many years. 

Truly, I think that much of our uneasiness about the future is connected directly to the aging process.  It ainít easy getting up in the morning and seeing that old man in the mirror, when in reality, our minds see a man of about 38.  For you ladies, switch the gender and the shock is definitely the same.  Our bodies are changing, our clothes donít fit like they used to, and suddenly around the sixty mark, our skin starts to become less flexible, and it happens so quickly that sometimes it really is shocking.

Living with diminished capacity, is something that is usually reserved for us AFTER we get into our sixties, however now we are having to deal with it due to our HIV/AIDS issues also.  This has been the most depressing part of Living with HIV for me.  It isnít easy adjusting to a motorized form of transport when you want to go to a car show, an art fair, or simply shopping, and that is one of the reasons I worked very hard after the last AMG I attended to keep the damn thing in the shed and simply try to walk more.  It worked for a few years, then recently, as my strength has increased and my ability to stand for longer periods, the pain started to increase to the point that  now I have re-started Neurontin.  Hate the shit, but I had to come to a place I could just admit I needed it and start again with a very small dose.  (100mg twice a day) 

All of the things that present to us are often times are issues that are tied directly to HIV and require our complete focus.  Unfortunately then our lives and our aspirations often times take a back seat to attending to our health issues. 

I know many of you have heard me talking about living without expectations?  That my friends, is the worst thing I have had to adjust to.  It seems when we were struggling day to day with our expiration dates, it was clear-cut.  We made plans with the full knowledge that HIV could change them at any time and we had to make sure everyone knew that our plans were tentative at best.  This left us in a state of limbo that wasnít and never will be pleasant, however, we canít change what the inevitable is going to be, regardless of how much we want or desire to do something.   

Now many of us have to deal with lives that are more capable, yet now we are facing aging straight in the face.  So, my issues have been in what to do about the future.  For reasons I wonít go into here, I am now forced to sell the motorcycle, something I really donít want to do, yet my body just isnít capable of handling two wheelers anymore, and that fact is not about to change as I move on into age 63.  So I have replaced that passion with my passion for campers and things exploratory.  This then places a strain on the budget, so plans for trips have to be made further out to make the funding more easily on the budget. 

All this is to explain the struggle I have had over the last 10 years to look into the future with hope and excitement, rather than hopelessness and dread.  No it isnít easy, hell you have to put 50 years of accumulated experience and habit behind you and re-create your life to accommodate an old person; that one in the mirror.  By any stretch of the imagination, this isnít a bad thing, just one that none of us have experienced yet. 

Iím doing pretty well, but when someone says that the State of Arizona is fucking over our ADAP program, my first response is to gather up my briefcase, computer, pack a lunch and head for Phoenix.  Then after a few minutes of retrospection; I lay the paper down, or pass it to the next person, and wallow in the current peace that pretty much pervades my life.  It has NOT under any circumstance been an easy adjustment, but sometimes volunteerism must be passed to the next person, and you simply walk on.  I know you, Joe, have for one, been terribly focused on helping the HIV community with everything, but sometimes it isnít a bad thing to look in the mirror and just say ďYouíve been really good at what youíve done over the past 20 years, and so many have benefited from my work, now it is OK to just rest, and enjoy the present good health I haveĒ.  I suggest you try it and see what happens.  It certainly has worked for me.

Iíll be following this thread, simply because I am excited to find that Iím certainly not alone in my struggle with the future, and what it might hold for me.  Publishers Clearing House, I could surely use you now!
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 mjmel

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Re: I'm not dead, so now what?
« Reply #15 on: August 02, 2009, 07:22:51 PM »
Moffie writes, " Now many of us have to deal with lives that are more capable, yet now we are facing aging straight in the face.  So, my issues have been in what to do about the future.  For reasons I wonít go into here, I am now forced to sell the motorcycle, something I really donít want to do, yet my body just isnít capable of handling two wheelers anymore, and that fact is not about to change as I move on into age 63.  So I have replaced that passion with my passion for campers and things exploratory.  This then places a strain on the budget, so plans for trips have to be made further out to make the funding more easily on the budget. 

All this is to explain the struggle I have had over the last 10 years to look into the future with hope and excitement, rather than hopelessness and dread.  No it isnít easy, hell you have to put 50 years of accumulated experience and habit behind you and re-create your life to accommodate an old person; that one in the mirror.  By any stretch of the imagination, this isnít a bad thing, just one that none of us have experienced yet.  "

I can so relate. Am 59. Although no motorcycle in my life, some of those words read like they are my own. We purchased a small camper and that's cool to do getaways but there are adjustments I've had to make that originally were not factored in my dreamings of hitting the road. For one: I fiind I can only drive for so long...5 hrs max...then my fatigue sets in terribily and I easily make mistakes. When fatigued I get slightly confused and process stuff slower. Not a good thing when traveling higher speeds of interstates. These are things which didn't bother me only a few years ago. I adjusted my expectations. I plan trips within 4 hrs of the house and bypass disappointments or discouragements. I don't want to waste my energy frettiing about age appropriate functionalities & abilities, ' how things should be'  for my age.

Mike

Offline AlanBama

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Re: I'm not dead, so now what?
« Reply #16 on: August 03, 2009, 03:10:45 PM »
Joe, my friend, your post hits home with me.  I am so right there with you.  I also employ RAB's coping mechanism, of just dealing with 'today' and trying to let yesterday go, and not worry about tomorrow.  It sort of turns you into a zombie (especially when you add antidepressants and sleeping pills to the mix).

I (stupidly, I suppose) kept thinking that SOMEDAY surely I would learn the reason for WHY I was allowed to live when so many did not.  What is that purpose I was sent here for?  Surely it is not the mundane life I now lead, just getting through each day, working part time at a job I don't really love, and feeling like it is almost a 'burden' to try to 'keep up' with all the people in my life, and inquire about their health, kids, lives, jobs, etc.

I believe that we truly do suffer from PTSD.   I have little motivation, and rely on my part-time job to give me a reason to get up and function each week.   Life is evolved pretty much into 'going through the motions' for me.   It seems (this year especially) my life has been one big doctor's appointment with a few breaks in-between.  Of course, that's part of my 'even-odd' year thing, all the bad things that have happened to me have pretty much been in the odd years....

I'm pretty much afraid to allow myself to feel my sorrow and my pain too deeply -- for fear that I would start crying and be unable to stop.   I just keep on going, coping with trivia in my mundane and meaningless existence.  I have volunteered for the Patient Advisory Board at my HIV clinic, and we meet once a month; so far, I have not been too impressed with it, and feel it is mostly a "mandatory" thing that they must have (so many patients to be involved in order for them to get grants, funding, etc).   They want to start a newsletter, with some of us writing articles....of course, I'm sure they'll be more interested in showing the "new face" of AIDS...I'll give it awhile longer.

Moffie speaks the truth, it is so difficult to grow old 'gracefully' with all the physical trauma our bodies have endured.  I brought a photo of me when I was 30 to work with me, and no one I work with even RECOGNIZED me !  They said "oh, that man looks like a young Robert Goulet".   Oh well, he was never one of my favorites anyway......so just as well they didn't recognize me I suppose.

I understand, Joe.   Wish I could make it easier for you.   With love, from the dinosaur's club....

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Joe K

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Re: I'm not dead, so now what?
« Reply #17 on: August 03, 2009, 09:26:08 PM »
Thanks again for all the support, but this is much darker and it is as if I am reliving the 80s all over again.  I have horrible dreams, where I roam hallways and look in on all the misery and suffering.  If I let my mind wander, pictures of friends long gone, rush through my head.  Lists of people crowd my waking hours and I find myself crying for no reason.  I have this shroud of guilt and anger around me, guilt because I did not die and so many others did and anger that I did not die and now am left to pick up the pieces.  I have been adjusting to my physical reality, for a couple of years but this goes way beyond that.  At times, it as if I am reliving some horrible years and I do not know how to make it stop.

Strangely I can write about it, but I am unable to vocalize how I feel, without an overload.  All I ask is the strength to see this through because it seems to be getting darker each day.  I'm calling the clinic in the morning, if for nothing else, I now have swollen ankles and anything that concerns my heart, scares me, but to be honest, right now, I do not care if I live or I die.  I imagine hitting 55 and 25 years poz, has really fucked with my mind, much more than I originally thought.  At least I understand what is happening, now I just need to find a way to get it under control.

Offline mewithu

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Re: I'm not dead, so now what?
« Reply #18 on: August 03, 2009, 11:53:50 PM »
Turning 50 last month myself. Ihave yet to understand where to go from here all my supposed friends have used me and I am left all alone. My dear Sister loves me to death and that may be where I end up if some things don't change with all the drug interferences that I have.Still here after getting severely ill in 1997 so I guess there is some reason for me to be hanging around, would sure like to know what that is besides dealing with fatigue and pain all the time.Sorry for the depressing message but that is the way I feel about this desease right now.
1997 is when I found out, being deathly ill. I had to go to the hospital due to extreme headache and fever. I fell coma like,  two months later weighing 95 pounds and in extreme pain and awoke to knowledge of Pancreatis, Cryptococcal Meningitis, Thrush,Severe Diarea,  Wasting, PCP pneumonia. No eating, only through tpn. Very sick, I was lucky I had good insurance with the company I worked for. I was in the hospital for three months that time. 
(2010 Now doing OK cd4=210  VL= < 75)
I have become resistant to many nukes and non nukes, Now on Reyataz, , Combivir. Working well for me not too many side effects.  I have the wasting syndrome, Fatigue  . Hard to deal with but believe it or not I have been through worse. Three Pulmonary Embolism's in my life. 2012 520 t's <20 V load

Offline em

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Re: I'm not dead, so now what?
« Reply #19 on: August 04, 2009, 08:55:20 AM »
fearing death ? or welcoming the end of the frustration this world has to offer . Or is it as Shakespear once wrote to be or not to be the questions that go through your mind while playin bingo ? No that was not it ? From some old play this guy had written almost a thousand years ago ? Hamlet says to be or not to be wether it is nobler to ? slings and arrows of lifes misfortune ( yada yada been there done that ) ? > or something like that

if I may almost 25 years ago  I was at the Watler Read Hospital  in bethesda maryland in the psch word there and the space shuttle blew up and all the TV's were preemted or interupted if you will  to show the news film  it was all over every TV and every channel for the rest of the day. I was told to watch  the news  right after I had stitched a pair of mocasins for this patient who did not have the wareforall to stitch the lasses them selves ?

While at this same hospital I had this dream after doing extensive reading. The book I had found at that time was the personal journal of what's his face the guy who chopped of his ear to sent to his girl freind with a note saying why have I not heard from you ?  Vincent price I think it was  ? No that is not it ? Vincent VanGooh ? the book was from when he was arested and placed in depters prison . Each page had a drawing and a short note then ten pages of what psych docs had written thinking what this guy was trying to say in his juornal ? Vincents images and own words said everything that needed to be said at least that was my thoughts ?

One night after reading this book I had a dream I was floating out side my body the feeling of uforia, peace and  well being filled me and was all around me  then meen while there was something inside me that made me look back at this dark empty shell that was my body all full of anger anguish and frustration > I went back to myself and the hate filled emotions fludded my body and mind > the sych doc I had told this dream to had told me he needed to up my medication cause that was just not right ??

I could go into reasons to keep living far better then the pills these life saving psych docs were pushing down my throat like a goose being readed  for Patea de fograw ?

Something a moment worth wating an eternity for ? Killfiol I beleive you had mentioned some place having a daughter ? When she has a child of her own and she places that child in your arms and says to her new born > Say hello to your grand father little one , in the softest loveing est vioce your ears will ever hear <

now if that is not somethin worth living for I know not what could be ?

I hope this is not seen as trying to hijack your thread or something not worth while to read ? I hope >

all my best to you

em








Offline Joe K

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Re: I'm not dead, so now what?
« Reply #20 on: August 04, 2009, 12:26:21 PM »
Mewithu, I hear your pain and I can empathize with how you feel.  Aspects of this disease are incredibly debilitating but I have no plans on going anywhere.  Em, your post was beautiful and I thank you, but it is not the will to live that I lack, rather it is this haunting universe, that now envelops me, that I find so disconcerting.

I know there is something I must learn from this, but right now, I have no idea what that is. 

Offline Moffie65

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Re: I'm not dead, so now what?
« Reply #21 on: August 04, 2009, 05:48:25 PM »
Thanks again for all the support, but this is much darker and it is as if I am reliving the 80s all over again.  I have horrible dreams, where I roam hallways and look in on all the misery and suffering.  If I let my mind wander, pictures of friends long gone, rush through my head.  Lists of people crowd my waking hours and I find myself crying for no reason.  I have this shroud of guilt and anger around me, guilt because I did not die and so many others did and anger that I did not die and now am left to pick up the pieces.  I have been adjusting to my physical reality, for a couple of years but this goes way beyond that.  At times, it as if I am reliving some horrible years and I do not know how to make it stop.

Strangely I can write about it, but I am unable to vocalize how I feel, without an overload.  .....  At least I understand what is happening, now I just need to find a way to get it under control.

Joe, I see you do understand that you are showing ALL  the classic signs of PTSD. 
What yo are going to do about it is obviously less clear to you.  I would suggest that you print out this thread, and file it for future use.  I would also ask for counseling, and think seriously about stopping all but  the HIV meds, and do a complete detox.  Of course you would have to check into a facility to make sure nothing goes ary, but seriously, you have to get victory over PTSD.  It might requre meds of some kind, but to make sure the meds you are on are not causing some of the  confusion, it might be a good idea to get all the other meds out of your system first.

Just a thought.
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 denb45

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Re: I'm not dead, so now what?
« Reply #22 on: August 04, 2009, 06:49:58 PM »
Joe, I see you do understand that you are showing ALL  the classic signs of PTSD. 
What yo are going to do about it is obviously less clear to you.  I would suggest that you print out this thread, and file it for future use.  I would also ask for counseling, and think seriously about stopping all but  the HIV meds, and do a complete detox.  Of course you would have to check into a facility to make sure nothing goes ary, but seriously, you have to get victory over PTSD.  It might requre meds of some kind, but to make sure the meds you are on are not causing some of the  confusion, it might be a good idea to get all the other meds out of your system first.

Just a thought.

 ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline AlanBama

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Re: I'm not dead, so now what?
« Reply #23 on: August 05, 2009, 09:59:59 AM »
Strangely I can write about it, but I am unable to vocalize how I feel, without an overload.  All I ask is the strength to see this through because it seems to be getting darker each day.  I'm calling the clinic in the morning, if for nothing else, I now have swollen ankles and anything that concerns my heart, scares me, but to be honest, right now, I do not care if I live or I die.  I imagine hitting 55 and 25 years poz, has really fucked with my mind, much more than I originally thought.  At least I understand what is happening, now I just need to find a way to get it under control.

Joe, it sure sounds like you are REALLY in a very dark place right now; I pray that you will find the help you need.   Perhaps the trip to Boston will give you some joy and maybe offer a chance to begin to re-direct your thoughts....

Love & hugs,
Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline sharkdiver

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Re: I'm not dead, so now what?
« Reply #24 on: August 05, 2009, 11:44:40 AM »
Dear Joe,
   I just wanted to let you know that I truly admire your honesty in your posts. I have had similar feelings come up time to time and it does make me aware of the scars and bruises that never seem to go away, no matter how I try to disguise them.
   I tested positive two months after you did, while still in high school. I was determined to continue on with my plans of going to college. But there was always a darkness following me, two steps behind reminding me of my mortality, discouraging me not to set the bar too high.  
   Now that I've made it to 42, I too am surprised that I'm still here. I didn't plan for this, especially career-wise. I want to venture out on my own and open my own clinic. But there I go again...my "I want to" needs to become "I will". I know this, but that "darkness" has conditioned me to think that way. Awareness and expressing it is a first step to shifting my relationship with "it." And it is shifting, and it gives me hope.
  
I hope I didn't hijack your thread with my ramblings about myself. Your post just really touched something in me.
   Big Hugs to you and I wish I was going to Boston to meet with you,
Sharkie

Offline lilguru

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Re: I'm not dead, so now what?
« Reply #25 on: August 05, 2009, 12:20:47 PM »
Thanks for your post.  I love this forum for the reason that I know I am not alone.  I was diagnosed in 1987.  I sold my house, paid all debts, quit my job.  Here I am now 55 years old and I really don't know how to deal with the fact that I may live to be 70.  I do sometimes think that it would be wonderful if it would just end, but then on other days I am so grateful to be alive.  So many years, so many doctors, so much medicine, so much loss, so much inner chatter and fear.  It wears one down.  But I say let's let it be and live our lives to the fullest. 

We are all so blest to have lived through the worst of times and I think in a way we owe it to all of the friends we lost.  They deserve to see us celebrate life.
September 1987 - HIV+

Offline Moffie65

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Re: I'm not dead, so now what?
« Reply #26 on: August 05, 2009, 12:33:38 PM »
Damn, I simply cannot believe what this thread has generated in all of us.  In our talks about it here at home, we have come to the conlusion that we all need to get something going with our legislators and HHS, to actually deal with this problem.  We were all supposed to die, we all took meds that have left us with a miriad of incapacities, we have mostly become broke, and now are incapable of facing the future of aging with little or no resources!

Seems like the President and Congress should know about this little talked about problem.

Joe, I'll be home this afternoon, and no, think smaller, more fuel efficient.
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 Joe K

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Re: I'm not dead, so now what?
« Reply #27 on: August 05, 2009, 12:53:32 PM »
I spent some time going through my journal of lost friends and it works out to losing someone, each month, for the past 25 years.  I never knew the magnitude of the loss, probably because I never wanted to know.  As hard as it was, to read the names and recall the memories, when I was done, I felt a very strange sense of contentment.  I had a dreamless night and the first sound sleep in a couple of weeks.

I really appreciate all the posts and PMs I have gotten and your thoughts have really helped me.  Especially the idea that ďsometimes we wonder how come the strong need help and who will be strong for the strong?Ē  Stephen and all of you are my strength and all of this is a testament to the power of this place.  Sometimes I forget who I am and I underplay my true impact on others, until I am reminded by friends.  All of this plays on who and what I am, but I now believe that all of this, the good, bad and the ugly are somehow connected with wiping my life slate clean, so I can start the next part of my life.

Offline denb45

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Re: I'm not dead, so now what?
« Reply #28 on: August 05, 2009, 12:56:34 PM »
Damn, I simply cannot believe what this thread has generated in all of us.  In our talks about it here at home, we have come to the conlusion that we all need to get something going with our legislators and HHS, to actually deal with this problem.  We were all supposed to die, we all took meds that have left us with a miriad of incapacities, we have mostly become broke, and now are incapable of facing the future of aging with little or no resources!

Seems like the President and Congress should know about this little talked about problem.

Joe, I'll be home this afternoon, and no, think smaller, more fuel efficient.

Yeah me too Moffie.......I would also ask for counseling, but, the psych is booked for the next 4 to 5 months, anyway, I'll just take my Lorazepam ( adavan), at least it takes to edge off, a little  ???
Joe hang in there man..I'm thinking and praying for you to be ok, as I'm sure you'll get thur this  :)
« Last Edit: August 05, 2009, 01:00:09 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Online Miss Philicia

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Re: I'm not dead, so now what?
« Reply #29 on: August 05, 2009, 01:00:22 PM »
Thanks everyone and Miss P gets a cyber kiss for suggesting PSTD.  I spent the afternoon reading about it and at first, I did not think it applied to me, until I read a story on PSTD in the military.  By substituting losing friends, to the loss of my home and cars, etc., I just never saw that as enough to trigger it, mainly because I always believed that PSTD was the result of some kind of violence, captivity or abuse.

As I read the clinical descriptions, every feeling and symptom that I have been experiencing was there.  The horrible guilt that so many died and I could do nothing.  The hopelessness of it all and it just kept going on for years.  The fact that even with modern HIV treatments, I still lose someone each and every year.  I found an old term for it: shell shock and I think that says it all.  With all the stress of the past five years and now that I have been able to somewhat decompress in Montreal, I think all of it is finally catching up to me.

Hey Joe, sorry that I've taken so long to revisit this thread.  But yes, several years ago I was reading a very in-depth article on a PTSD case of an Iraq veteran who later went on some rampage when he came back from duty and eventually pulled a Thelma and Louise with his brother at the Grand Canyon in a car.  While I'd never compare myself to a war veteran, there are similarities and definitely the symptoms can line up, so call it whatever you want.

Also, because I became sexually active the same year that the first AIDS "Morbidity" article appeared I concurrently was dealing with reconciling my sexuality with AIDS hysteria, and being outside of the gay community initially (meaning big-city gay community, I was basically "out" my freshman year of college but it was out in the boonies) looking back now it was very traumatizing, and then getting diagnosed in my late 20's really put a damper on any sort of career motivation, and so I've been stuck with that fact even though no "on paper" I'm the picture of good health.

But as others have so accurately reflected here, and it's also a PTSD thing, learning how to not invent worries about the future or obsess on the past is all cognitive behavioral therapy stuff, even if one doesn't elect to formally engage with a professional therapist.  However, I was the one to raise the PTSD issue with my current therapist and he was supportive of my theory.  I still think it would be advantageous if this issue was somehow more formally explored for LTS'ers, but I doubt it will happen.

I guess I could get off my lazy ass and make it happen, but I doubt that I will :(
"Iíve slept with enough men to know that Iím not gay"

Online Miss Philicia

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Re: I'm not dead, so now what?
« Reply #30 on: August 05, 2009, 01:22:36 PM »
OK, so now I also totally caught up on all of the other posts, and I'd also like to add (though I've mentioned it before) how I have been going monthly to a "real life" support groups structured solely for LTS'ers.  I know not everyone here lives in an urban area, but if you do I encourage you to either locate a group like this or form one yourself, as it's immensely helpful.  It really is this PTSD issue that all LTS'ers share, and that seems to separate our experience from others, and there's really a sort of peace you can obtain about many of the issues by being in a group setting -- which you can all see by what you're getting just from doing it on line, but I will add it's greatly intensified in a face to face setting, and something more than just a social event.  The group I attend is quite small, along the lines of a maximum of 7-8 people at any one meeting, and sometime only 4 of us, but it's always the same group of people more or less so it's quite accommodating.
"Iíve slept with enough men to know that Iím not gay"

Offline sharkdiver

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Re: I'm not dead, so now what?
« Reply #31 on: August 05, 2009, 07:08:06 PM »
Thanks for suggesting the LTS group meeting. There is nothing formed in my area, so I've been decided to start one up this Fall. If you have any suggestions that would be great (PM) or even a new thread.

 :)

Offline em

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Re: I'm not dead, so now what?
« Reply #32 on: August 05, 2009, 09:08:20 PM »
sorry could not resist this statement >

even though I had not served in The persian gulf or vietnam > I could say I am a war vet but that info would be clasified and I am not alowd or sapose to discuss it > at least that is what they tell me > even though most of the stuff I had done is clasfied and I am not at liberty to disgus openly about at least again that is what they tell me ?  most of the vets I know who have PTSD are non violent and just want to feel at ease again and sleep after the night mares that haunt there nights and prevent them from sleeping most do not know or want to know what really happened they just want  a small bit of peace hope and happiness  to get them through the hard time they have dealing with life at the home front > just because the war is over does not mean the battles are over ?

I hope this helps and am sorry it is not very clear ?
all my best
em




 

 


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