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Long term disablity burn out
May 18, 2012

I have been HIV+ since~1983 and started being symptomatic in 1987. In 1990, my t-cells were 80. In 1992, ,my appendix burst and I wound up with peritinitis and severe nueropathy. In 1994, I was diagnosed with Hep C and CMV retinitis. In went out on disablity in late 1995 with t cell s in the single digits. I did intravenous infusions for 4 years for the CMV. My kidneys failed in 2000 and I was on dialysis for 8 1/2 years. I did get a transplant in late 2008 and the recovery took almost 2 years. The disablity is going now on 17 years. I take ~14 prescription meds, have fatigue, and difficulty driving due to the nueropathy. I am OK financially and would like to do something to get off disablity but I am terrified that something else will come up healthwise. T cells are now 500 but I have to take 5 HIV meds. My only symptom now is fatigue and severe depression due to HIV burn out. I am 52 years old. I get my drugs through Medicare Part D. I really feel lost.

Response from Mr. Chambers

Not being able to work as you have been is bound to be frustrating for you. You should consider what you might be able to do to give your life more meaning and some satisfaction.

It is also very scary. I believe that the fear and upheaval caused by returning to work is just as bad as it was when you left work on disability.

However, before actually going back to work, there are some things you should do that can help you approach a return with less fear and some confidence.

First, see how you function on a schedule that is fairly rigid and not subject to how you feel. Get up every weekday and go somewhere. It doesn't make any difference where, to a library, to a museum, or other public place, even if it's just to a park to sit. Do this for a couple of weeks to see how your body handles it. The key is getting up every morning, getting ready, and going out, whether you feel like it or not. It's not important at first how long you stay out, although if going out is OK, consider staying out longer each day.

Based on how that works out, consider some kind of regular volunteer work, something that would put you on a regular daytime schedule, not without any real repercussions if you can't make it one day but not a full eight hour day yet . Obviously, an AIDS Service Organization would be empathetic to your condition, however, some people want to get away from HIV. Try helping at a senior center or other agency. There are lots of places that would love to have your help.

After some time with this, review how it is going. Is going out daily reasonable? If so, good. If not, and you still want to do something, consider what you could do out of your home, either working or helping others.

Once you feel you could do something for money, then you need to learn the return-to-work programs from Social Security. They are quite generous.

If you have private disability insurance also, read the policy and see what it says about residual or partial disability. Most plans provide some encouragement to attempt working. There are sites that have a lot of information about that. If not, ask me any questions you have.

By starting to do something towards possibly going back to work, you'll start feeling better mentally. You are moving forward. If you are able to return to work either part-time or full-time, great. If not, you will know your limits and probably still find an activity that you can perform that gives you some satisfaction.

Best of luck, Jacques

found hiv+
planning for the future.... SSI and Medicare

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