Main Forums > Pre-HAART Long-Term Survivors

Disability retirement

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deibster:
Welcome to the forums Rlonny,
 Your profile does not show where you live, and that has something to do with the reaction of the people whom you tell that you've 'retired.' I live in gay Provincetown, cape cod, MA. The AIDS Support Group is a big part of the social scene & there is virtually no stigma for being Poz here. Being a summer resort, many people do not work all year round. We also have a great ADAP program, called hdap in MA.

Personally, I quit working about the same time my mom had a 2nd stroke and I physically took care of her for 2 years. My neurologist wrote a recommendation for disability, as I had been on antidepressants for work-related stress for years, in addition to my HIV. I got SSDI on the 1st try, in addition to a disability pension which took 3 years of fighting the system to collect. I say I'm retired, and to friends I'm retired for health reasons. Most friends are sympathetic to that. Only if they have a gay relative, 3 friends from high school have gay sons, do I tell them about my HIV. I do volunteer work & manage my finances, etc. Best of luck and hang in there.
Hugs, Deiby

tony63:
Wow, were do I start?  I "LIVED" and now what?  I have been HIV poz for 29 years.  I went out on total LTD in 1995.  I lived in CA at the time and my doctors told me to "get my affairs in order" and go back home to MD to tell your family that you have AIDS.  It was a very difficult thing to do but I did it.  That alone can wreak havoc on your mind.  My t-cells were down to 9 and I was starting to have different kinds of problems with my health.  I sold my Life Ins Policy for almost 100k to a Viaticus company.  Hmmm, they took a gamble on my health and they lost.  I was able to buy my first house and I didn't just go and blow all the money.  I have had some major medical problems over the years, the last time being in 2005 when I got osteonecrosis  (AVN) in both of my hips.  I had both hips replaced in 2006.  The stigma of not working is really a big deal for me.  I think that a lot of people think that I am perfectly well and should have a job.  This is taking a huge emotional toll in my head.  I would love to go back to work but I don't know how.  I have been out of the work force for so long and nobody wants to hire "damaged goods" at the age of 50 now.  I have to deal with my insurance company every 10 months sending my letter for approval from my doctor.  This is another huge issue for me.  I think about losing what I have every day.  Sometimes I think that my doctor thinks I am using the "system" and I have a feeling the next time the paper come in the mail that he may not sign off on them.  Even if I went back to work, I would have to find a job with good insurance and decent pay and I don't think anyone will hire me now.  I have never been to a Psychiatrist but and so depress lately that I don't know what to do.  I feel very alone and scared most of the time.  I could go on and on but I won't.  Any thoughts from the long termers out there?
If you have read this far....thank you very much!  Best regards, Tony

mitch777:
hi Tony!

welcome to the forums! :)

I am 54 and poz for 30+ years.
I am trying hard to get SSDI (turned down twice).
My ability to work vanished several years ago but having a business that my partner (hubby) can still operate kept me from an urgent need to apply when I should have.
(just a bit of backround info)

One question I would ask you is, do you feel physically and mentally capable of working?
If you can't answer yes to BOTH I would suggest that you need to be open with how you are feeling to your doctor.
If he doesn't get it and never will, hmmm.... I would consider a new doc.

If you are anything like me, I appear at first glance to most people to be "healthy looking" whatever that means.
It can get frustrating to know that others cannot understand what we LTS have gone though and are STILL going through.

The idea of seeing a Psychiatrist was difficult for me (last October) and I am SO glad that I broke through my fears and decided to dive in.

Your story hits home with me.
Thanks for sharing and I hope to hear more from you! :)

PS- please try to not feel guilty about what others think.
this has been YOUR journey, not theirs.

BT65:
Hi Tony,

I went on disability in the early 90's (SSDI) and now work part time.  I tried full time but was exhausted and sick all the time.  I also have AVN, but in my knees.  They both need replaced but that's not something I can do at this particular time.

If you feel the need to work but are unsure if you can accomplish this, you could do what I did before returning to work part time.  Volunteer somewhere a couple days a week.  Even if you can't work, you could still volunteer for whatever tugs at your heart strings, i.e. an ASO, a pet shelter, a local public assistance organization, etc.   This could get you out and perhaps help your mental health.  This is just a suggestion, only you know what you're capable of.  I agree with Mitch that this is your life.  Others don't know what you go through personally and you shouldn't concern yourself with that.  Hope to hear more from you!

Betty

tony63:
Dear Betty & Mitch,

Thanks so much for taking the time to read and reply to my message.  I have been in such a dark place lately and just hearing from the both of you have moved my spirit.  I know we all have our problems but at least I know there a few others out there that understand what I am feeling.You really have no idea how much better you have made me feel this morning when I read your messages,   I am going to try and stay in touch with this forum and post and reply to our fellow brothers and sisters!  Just communicating with others in the same situation is a help.  I am going to seek some professional help.  I have been putting it off for so long.  Thank you, thank you. again!
Tony

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