POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: Robbee on September 11, 2008, 12:21:14 pm
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Hello Everyone,
I consider myself an LTS (14 yrs). How ironic that as a Long Term Survivor I am having tremendous difficulty getting my mind to envision any long term planning. Does anyone else share this block of being able to envision the future and to plan for any visions that do materialize?
Robbee
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It takes practice....like most things.
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Hey there,
I do admit that in my later teens (over 20 years ago) I worried at times whether or not I should make plans for college or a career because of my diagnosis. I quickly decided that I'd beak my larger life goals into smaller ones that were a couple of years in the future. That appeared more manageable and that if I had to take any time off, I would still be on my path to where I wanted to be.
I still practice that today. I have a general long term plan of what I want to do but I break things up into goals I can reasonable accomplish within 18 months.
Like the Wise Bear said. It takes practice
good luck
Sharkie
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My doctor set me straight this week , I have been POZ 23 years now , not 26 as I have reported before .
Within a year of being diagnosed with Aids I lost my insurance and began to struggle with medical bills that eventually led me to seek disability . After this I worked hard to put a roof over my head and feed myself .
My longterm goals and plans for my future were put on hold as my day to day survival took most of my attention and energy . I find myself now at 46 and still dealing with many of the same issues I did 23 years ago .
About 6 years ago I just ran out of steam , I lost it so to speak . The years of uncertainty and constent stress and struggles caught up with me and I just couldn't find it in myself to go on another day . I had not even had time at this point to deal with my feelings about my HIV status and I found myself in crisis .
I'm one of the lucky ones , my family stepped in and provided me with my own home and the support I needed to get back on my feet . At 46 , I'm right back where I should have been at 23 . This time I have the luxury of taking my time to figure out what I want to be when I grow up ;). I plan on living to 100 so I have time , I'm only half done .
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When I was in my 20s and 30s I made five- and ten-year plans, even if I didn't feel myself a failure for not having accomplished everything. It gave me a roadmap and made me feel good. Even throughout the early years of my diagnosis, I still kept up the mental exercise of objective planning.
It was only after my health started really deteriorating that I gave up on that. But seeing as though I've managed to survive seven years in the minefield of one-thing-after-another, maybe it's time I tried again.
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But seeing as though I've managed to survive seven years in the minefield of one-thing-after-another, maybe it's time I tried again." quote Bucko
This is really close to what I think.....that as long term SURVIVORS....there is a lesson in there somewhere if we search hard enough. Some, most LTS's...probably, have been through that "minefield" and are stil here...so why not try some long term planning. Its not like we have to stick to any long term plans...but if we make it far enough we might benefit from some of the long term planning we did. I gave up all planning in 1990....and much to my dismay found myself in 1996, without any long term plans. By 2000 I had tried to repair my long term plans to some extent....but with the knowledge that I can plan for the future but can NEVER see the future. However, now as I reach retirement age, 65, I need to have some plans. I dont want to be homeless, for example. I want to be able to live in a nice apartment with Kurt and be able to save a litle for travel.... or whatever.
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I plan ahead only about a week in advance. The things I thought about becoming when I was in my late teens/younger 20's never did materialize, or if they somewhat did, they didn't last.
I just want to be content; really, that's all I want right now. Long-term, I don't have the mindset to think that far ahead.
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Betty
I think being "content" is a fine long term plan.
Hugs
Joel
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With eleven years of living with HIV under my belt, I'm the diametric opposite of the OP.
Granted, my position is different: I was fortunate to have age, a high CD4 count and an early diagnosis on my side; so in that sense I was blessed with the time and the good luck to be able to delay treatment until I joined an early treatment trail. By comparison with those who had gone before, it has all been a relatively benign experience for me. I am guessing that the fact that I have never known what adult life, independence and love are like without HIV also means that I have less to mourn, compare with and regret.
I was diagnosed in my last year at secondary school (high school) and it wasn't long before I was immersing myself in higher education and working towards a BSc – and more recently an MSc in Nuclear Medicine – so I've never really allowed myself the time to do anything other than working towards a career and the, perhaps flawed, assumption that I have a long and mostly healthy life to look forward to. That there is a potential flaw in my plan doesn't bother me though, it just fuels the determination to achieve and enjoy life in spite of what others expected for me.
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I would have to say no, Robbee.
I don't make any specific long range plans anymore, although I do have some general ones that I dream about now and then. After 20 years (this month in fact) of living with this, I have learned only one certain thing: tomorrow isn’t guaranteed to anyone and it never was.
If I wake up alive tomorrow, I will live in tomorrow then. Simple to say, not always easy to do.
Daniel
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I have downsized to living day to day. There are Doctor visits marked on the calendar, which is pretty much all I have to look forward to these days.
ronnie
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Long-term, I don't have the mindset to think that far ahead.
me neither ;)
For the first ten years after being diagnosed with AIDS, during the early 90s to the early 00s, my doctors kept telling me that 3 months was the max I had to look forward to. Ending up in the hospital twice in two yrs (pcp, pneumonia), far below 200 tcells counts, unable to obtain an undetect-VL, along with the terrible side effects of all the different meds I've been on, tended to make me agree with them.
Thankfully, we were all wrong. However after living that way for so long, I still trend that way in my thinking. I'm not feeling sick today, so it "could" take a month for the pneumonia to begin, so three months is still about as far out as I consider. Of course with the better meds, and in better health today (though still problematic), it feels odd still living with that mindset. Having outlived two partners now should help me believe that I might have a longer future; but since the second partner just recently passed away only 2 months after his diagnosis (non-hodgkins lymphoma and AIDS), I've been reminded of just how quickly things can turn and go bad.
Part of me is scared of living longer (how the heck will I be managing to survive in 19 yrs when I turn 65 and am still poor and on disability after 31 yrs?), part of me would like to make future plans (since I've felt better in the last 5 yrs than the previous 15 yrs, I feel like I should be "doing something" but a job would only mess up the disability again. And physically, I can NOT afford to lose my meds and medical coverage!), and part of me wonders just why I want to continue living (don't get me wrong, no suicidal thoughts here. That's just the grief talking after losing my partner a few months ago and being alone again with just my doggies).
While my partner was in the hospital, and frequently when conversations turn down this road, people have told me to just live "day by day". Unfortunately, I'm just too uptight to handle life that way. I can't think that I only have today, because I do have faith that I'll still be alive tomorrow (it's been happening that way for 16974 days now (I turned 46 in March). why should tomorrow be any different? LOL I also never consider that proverbial bus that might hit me because the odds against that are pretty damned high ;) ) and without some plans, my life would end up more of a mess than it already is. ROFL I always have plans for the upcoming days, and usually for a couple more weeks in the future.
I think a lot of long term planning is dependent on a person's health condition and their mindset. If I hadn't been on such harsh meds, or hadn't been so sick for years, or had higher tcells, etc, then maybe I would really plan for the years ahead. But still dealing with side effects, still "half sick", and now living without a partner again, I've only got "plans" up until Christmas. I guess I'm still just living on the "3 month plan" basically; but it's worked for over 16 yrs now, so I guess it's okay. LOL
best wishes to everyone for whatever time frame they choose to plan for ;)
mikie
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I don't have career plans and in this economy my financial plans have been reduced. When I had time 2 years ago I went to an art class and made etchings. Then, last year till now I've been helping my aging parents which has gotten better, but they are so thankful I am around, it has totally changed our relationship.
I got busy yesterday and cleaned out the linen closet and lined it with paper even....
I bought season tickets to the Philharmonic series that goes thru to May '09
I'm planning on staying a lot longer. But I have to tackle problems one day at a time.
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I have been positive for 23 years. In the mid 90's I realized that I had been "blaming" HIV for keeping me from living my life and working toward the future. I, like many of you, have had my challenges medically. I finally got tired of being poor and trying to live on disability. I found that when I took responsibility for my life from HIV and bying into the "disabled" mind set, I went back to grad school and now I am working at my dream job. Life for us is more uncertain than for many. This uncertainty has been affecting me from time to time now that I am older. I wonder when I'll get sick, too sick and maybe die. I've seen so many friends, loved ones, acquaintances and hero's die, though here I am really cheating the odds.
I realize that my post is rambling so I will sum it up by saying I can't let HIV keep me from moving forward in my life. My life is important to me despite the uncertainties and I want to show up for it every day.
Paolo
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Hey Robbee,
I think the way Paolo put it sums up my feelings pretty well. There are times I get a bit down or unhappy about the body shape changes I am living with, and I agree, there is more uncertainty for those of us living with HIV.
But, as Paolo said, I can't let HIV keep me from moving forward in my life. My life is important to me despite the uncertainties and I want to show up for it every day.
I think that is even more true for those of us more than 50 years of age, or who have "been through the mill," so to speak, with HIV.
I still make plans and goals, though I am not afriad of changing those plans when life throws a few zingers my way.
There is an old saying, "LIfe is what happens when you've made other plans." ;)
Works for me.
HUGS,
Mark
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Dear LTS,
Many many thanks for all the wisdom you have publicly shared in this thread, as in others. I learn a lot and am inspired, especially on gloomy days I might come to this forum for comfort, by all your tenacity and wit.
Best to you all.
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I have never let HIV determine the "condition" of my life. From the first day of diagnosis in 1983, I pushed ahead and never gave the "possibility" of death a second look. I have always been fairly stuborn and the diagnosis was something I just could not accept as the end of my life.
I have many long term plans, even today, but I have also accepted that HIV may change those plans at any time. Therefore, I live with the sense that I can and will do anything I plan or want to do, given the correct funding and planning. However, i always leave the possibility that HIV may change or prolong the timeline. I also never accept an appointment for anything or meeting that I don't explain that I am the host of a bug that might change that appointment. Most of the time, HIV has nothing to do with it, but in times when the immune system might be fucking with my life, then flexibility is really important. I guess that means that planning is at best a temporary situation that can and will be made permanent when the time comes.
I guess what I am saying is that HIV should never block our struggle and attempts to live a normal and active life.
Plan away, and enjoy each day as if it is your last one.
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Hi everyone, long time since my last visit here and found this interesting post that i wanted to add to. Most of us long termers probably feel this way, even if very deep down inside. For myself, I do not trust unfinished research - I believe HAART prolongs HIV related illnesses - I do not know the future effects of these pills . After living with HIV for 21 yrs I lived life without thinking further than 12 months. This was not a bad thing and still is not a bad thing, you achieve so much with that outlook. I am not risking any more devastating emotional letdowns by saying I'll live a long life solely due to HAART - I remember how fast lymphoma hit me and without warning, I'm one of the lucky ones who made it through. HAART does not remove emotional wounds. In 2008 I know I'm not dying anytime soon from HIV and that is a change from the 80's. I'm at ease with short term outlooks and have just recently reached a fork in the road with choices I can make that will determine a future path for me. I realise I am not so much scared of the thought of becoming ill if I branch out - rather I'm more scared of becoming non- adventurous and mundane if I have a plotted life. Having HIV is a very painful emotional process and I want to feel comfort when I'm looking ahead so short term plannning offers that. To experience what's ahead with a free mind I need to turn my back on past pains to have comfort for today
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it's funny but i don't think about dying anymore rather i fear that i will live longer that what i was expected to!! the emotional pain of being hiv + is worse that the actual disease,the loneliness,the depression,the discrimination.i miss all my friends that have died and i find myself thinking about the good days when they were around and all the things we used to do together.i am the only one left ,am i suppossed to celebrate this??sometimes i think that they are the lucky ones!!!
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i miss all my friends that have died and i find myself thinking about the good days when they were around and all the things we used to do together
I find myself in this situation often. And I continue to be in it as long as I dwell on it. My past memories are what keeps me alive alot of the time! But the past is what it is. For me there sometimes are certain memories of the past that are actually not as good as I remember and for this reason my 'selective amnesia' mind will not alow me to focus on the less desired memories for the purpose of 'today's mental self survival', I guess? Nowadays, tomorrow is usually a big fear for me. I find myself using today as a time for dwelling on yesterday's 'mentally exaggerated' good times as a comfort thing to enable me to tolerate all the fear I have of what comes next. I've really been bad the last couple of years to substitute working 7 days a week and building computers in my bedroom every minute I'm not working, sleeping or eating, for what I could be doing about creating friendships for the future, which I can possibly / probably think back on for years to come with the same exagerated 'no pain' / 'all fun' frame of mind. And I balk at making long term commitments that it usually takes to initialize and grow these new friendships because I'm skeptical about how long I will live, or maybe I'm not as good looking as I was back then, or I don't know anyone nowadays to introduce me to new people like I had then. So I work, and sleep, and eat, and build, and worry, and obsessively recollect the past and find ways in my life to resist having to make that commitment to form new relationships to join those of yesterday.
I am in the same boat as you, and would very much like any news of your situation if you find a solution. Meanwhile, I'll keep on grinding my way to a never ending quest for material happiness, which, so far works well until the new wears off the material.
BTW, I met a guy a couple of weeks ago in a store and said "Hi" to him. Wow, that was a change for me, saying "Hi' to someone new. Turns out he called me yesterday and needed to know about a problem with his car. Being an experienced mechanic I had a possible solution over the phone which proved to be what he needed to get it fixed. He told me he plays guitar for a band and they play a club near my home and I'm going to leave in about an hour to check out that show. No cover charge, late night hours, don't know about the entertainment yet, but at least I'm going to shut down this computer for a little while and see a live band. Yes this recluse is going out tonight finally. And I'll be hoping to meet somone I can think back on years from now, just like my friend Steve is probably thinking about me right about now from wherever he went to when he died on November 21, 1987. I wonder what show he's playing tonight? I imagine he'll have a ball just like we always did!
I hope this helps a little. Let me know if you find some improvement. I'll let you know if I find a new friend. :)
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you know its been so long that i have felt this way that i no longer look for improvement.I feel that i am no longer living ,i feel that i merely exist,i go from day to day ,following a routine ,everyday flows into the next and to tell you the truth the best part of the day is when i sleep,thats the only time that i feel like i have some relief,the only time that i feel like i am loved ,the only time that i feel safe and the only time that i don't have to be hiv+!!!Sometimes i wi=sh i could just die and that would be the end of it all,i would be gone and i couldn't look back and regret.I can't even remember how to cry, sometimes i feel so afraid that i don't want to come home buy yet HOME is the only place that i know that i belong.I am just a shell and there is nothing left inside,truly there is nothing left inside,,,,,i used to be able to see myself,my reflection but now i see nothing and i don't want this to go on,i really don't.
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I am glad this thread exists. I am in such a weird position. A year ago, I was hanging on. August, I was pretty sure I was on my way out.
Now, I have enough T Cells to give some away form Christmas presents, and a regimen that actually seems to be working. And if this improvement keeps on keeping on, the idea of "Manageable" might actually be a reality for me. Also realities" Student loans, state and federal assistance, getting this extraordinarily expensive meds (retail of a month of meds for me is roughly $3,000 Amereican) and going back into that place.
The World.
Scary thought. Daunting. And I know its way premature to be stressing over it. But still I do. Chronic illness at least has a lot of consistency to it, in an inconsistent sort of way.
Now the rocking I feel... might just be the absence of anchor. And untethered by the notion of death, I am almost petrified. Where next? I had spent so much time identifying as this guy. And now... well, its only been a few months... but I am beginning to think I might be someone different.
But who? Who? And How?
Ack. One step at a time. I know. but it messes with my head.
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retail of a month of meds for me is roughly $3,000 American
How can these medicines cost $3,000 a month! I believe you, it's just such a incredibly massive markup on price. As if HIV isn't enough to deal with. These prices are appalling. Even if you paid full price that included profit for the drug company, these pills should not come anywhere near that amount. Is this common price in USA for people with HIV to pay? This makes me so mad. Im really sorry to hear you have to suffer this corporate approach in health care. Sorry for the rant and I know I went off the subject here but this really stuns me.