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The habit of living like time's running out?

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Wow. Thank you all so much for your replies. I was worried I'd hear nothing but crickets, and when I wen to bed last night that seemed to be the case. But all your replies so far have me so encouraged. Thank you! You are all beautiful courageous people and I hope to "see" you more.

Let me say that going on LT disability and making a big move (relocated from SF Bay area to a rural State) actually has enabled me to grow in many way, discover wonderful parts of myself, and even find my way back to a career in the arts. That's the big path I veered from because of HIV. I am engaged and respected in my community, and in many ways feel more a part of the world. And I like being an example of and HIVer doing good.

Being on LTD has also enabled me to accommodate multiple medical appointments, health issues when they arise, and time to take care of myself physically and mentally. I like to think it's evidence that LTD is working to keep me healthy vs. running myself into the ground.

Still...I have my guilt about being "subsidized." Although Goddammit the arts in this country SHOULD be subsidized. Another discussion there. And worries about retirement.

So I'm enjoying my health. But still can't quite believe I might be in a rocker in 20 years.

Again, thank you ALL.


I like to think of it as a catch 22 situation: We have a condition that forces HIVers to look over our shoulders to see death right behind us.  And even when we do not look over shoulders our status stays in the back of our minds.

Here's the thing I'm forcing myself to understand: Death is always with us, even if you do not have HIV and have perfect neatly.  That is just the truth.  Like you, I abandoned everything in life, excluding sex and survival, so I could live another month, (a week, a day, an hour....) just so I can move forward.  So now I took have to worry about retirement, meaning developing a sustainable lifestyle until the day I die.

Wish me luck....

Retirement is a reality for a lot of us with HIV. 
I highly recommend saving $$, investing, and making sure you are contributing to Social Security.  If you are already on disability, well, thats like early retirement.
Rather than thinking about how tragic your life is, or how close death is, try looking at a future with HIV. I am almost 70 years old and have been HIV poz for 24.  I just retired and, although I am not living in the lap of luxury, I am ok.  I worked up till I was 67. My partner had to go out on diability in 1995. Hasnt worked since.  He was lucky to have disability insurance with his employer.  He makes more than I

I know this one well. I tested HIV-positive in 1986. I was told I had less than two years to live. This wasn't up for debate. And everyone I knew with HIV was sick or dead. I planned to live as best I could but I never made long-term plans. After the two year mark, I asked my well-known AIDS doc what he thought the prognosis was then. "Another two years." Ok. I readjusted. Then when it happened after six years. He said another two years. I said, "you don't have any friggin idea what you're talking about, do you?" He sheepishly said, "No. I don't." To which I replied, "Then would you PLEASE stop telling people they are dying? People make plans based on your predictions." Yeah I was a little pissed. And I didn't say "friggin".

Now here we are 28 years later. My health has declined. I have 140 t-cells (up from 12 at one point) and severe neuropathy in my hands and feet. Every step of  the way I kept planning on dying, not living. I worked for 20 years, I had a great job but didn't think saving for old age was in the cards. I was self-employed and had no disability insurance nor a 401-K plan. I'm living on Social Security Disability and a little bit of savings. I get by, but I still have no idea what "retirement" means.

I worry about living another 20 years on a limited income. But for me living in the moment means being grateful I am alive right this minute. Not future-tripping but also keeping one eye on growing old. In reality it is a little bit of each—the here and now and the future. I admit that twenty years seems unimaginable but the past 20 went by in flash. All I know is I plan to make the next 20 (should I have them) the best they can be, even if I don't know what it looks like.

In the meantime, I've started a community based website devoted to long-term survivors, planning a town hall on the same topic. Because being out and open has been one of the things that kept me sane and fulfilled. I also want other people's help in solving these problems. We are not in it alone.


Hey Moxie:

You never know what's coming next!. Maybe a bear that falls helplessly in love with you, that's going to pay special attention to make sure that every day you have coming for the rest of your life is going to be filled with loving', lots of joy and happiness, and of course, at times, pain and sadness.

We are all dying. That's the easy part we all share. The hard part is deciding to live, to be fully alive, welcome in full heart what life presents to you.

That's the scary part. After so much fear and anxiety, trusting in life enough to once again let in the light and warmth.

But my experience is, it is possible to move in the direction of becoming fully alive once again. An ongoing process. And please note: If you go bear hunting, bring a salt shaker. If you get close enough to a bear to salt its tail, you got him.

Or in my case, soy sauce will do :-)


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