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For those of us who have been positive for 35+ years: We spent a long time just trying to 'survive.' But now that HIV is a manageable chronic condition, the goalposts have moved. We’re planning for retirement, watching our kids/grandkids grow up, and thinking about our legacy. What is the one thing you’re doing now that you never thought you’d live long enough to do?

March 29
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Answer Summary

Members reflected deeply on the profound shift from surviving HIV in the 1980s and 1990s to now planning for futures they never expected to... Read more

Members reflected deeply on the profound shift from surviving HIV in the 1980s and 1990s to now planning for futures they never expected to have, sharing stories of outliving dire prognoses to see children and grandchildren grow, pursue education, start new careers, and write memoirs. Several members offered practical wisdom about the mental shift from crisis mode to future planning, catching up financially despite lost decades of savings, managing long-term health complications like neuropathy and kidney disease, and finding purpose through mentorship and community connection. A recurring theme was releasing survivor's guilt, embracing the right to a full life, and redefining legacy not through wealth but through resilience, relationships, and the courage to keep moving forward despite profound loss and loneliness.

A myHIVteam Member

Paul I also suffered from sciatica for at least 3 years and I have kidney disease. I know it can be very painful. I did get some relief from 500mg of Tylenol 2 tablets three time a day. Yoga and meditation has helped manage the past pain. Now days I still get a little pain but it’s nothing compared to how bad it was. I hope meditation can help because it helped managed my pain. We pile a lot of our shit on top of the pain we have. When I was in pain I thought it was never going to end and that I was get old and felt like I was falling apart. I learned to relax as breath and felt great relief. I hope it can work for you. ❤️

March 29
A myHIVteam Member

I'm 70 yo and HIV+ since 1984 and AIDS since 1998. In my twenties I never thought I would live to see 40. And at 40, 50 seemed a stretch. When I was younger, I never planned for a future I thought I would never have. But today, I am still here, living a decent life with a partner of 13 years. What I thought I would never live long enough to do is write my memoir of living with HIV and everything else that comes with getting old. Now I can say I have written it and hope to publish it soon

March 31
A myHIVteam Member

@damiengimez .

Your ex left because she could not handke the responsibility of taking care of you.

I say its a good thing she left ahead of time .

I mean what if you were healthy and git married what would she do if you really got sick :o !

As to not having anything just think of it like this .

Your not tied down to one place for the next 30 or 40 years esoically paying mortgage payments .
General upkeep of the place.

No doing the usual maintence that goes along with home ownership.

Now yes such things will keep most " grounded " but your free to go wherever you want whenever yiu want ....

Since giving our home to the mortgage company and moving into an apartment well yes life has changed because those things listed are no longer always on my mind that " I have to get them done " .

Yes its a nice thought for some that they have to get up swallow some pills and go to work meanwhile others dread that thought .

When I was still working my attitude for work usually depended on the day ( my position changed daily usually.

Then I got myself into a sweet gig as the break maker .

I had ny own little world in my bread room where I was the only one I had to deal with .

I coukd go jn get my quote filled and go home to my husband and fur babies and be happy that I had accomplished the goal of fulfilling the quota .

Sometimes you just have to look around you at what yiu have and decide " dammit today I am going to change my life ! "

I mean unless you change your life its not going to get any better now is it :) .

March 30
A myHIVteam Member

I'm 62yrs, HIV infected since 1987, and struggling with sciatica and neuropathy quite a bit. I am seeing my PCP on Friday to discuss options. I would like to be on a COX-2 NSAID, Diclofenac is my first choice. At this point, I am taking 400mg ibuprofen 3-4 X day. The Diclofenac 75mgs would be twice daily and give me better coverage. NSAIDs are contraindicated for kidney disease, of which I have CKD3 (1-5). But the pain is intolerable without an anti inflammatory. Tylenol does not work for this type of inflammatory pain.

March 29
A myHIVteam Member

Congratulations on your success nothing is impossible that's where I keep telling myself I'll make it happen one day take care

April 2

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Nesquehoning, PA