Mixed emotions

[wolfter]

I've already rec'd feedback from my family on this topic, but you all provide advice from a different place.  I first rec'd SSD in 91 and I got it approved immediately.  I didn't even apply for it, Bill did while I was in the hospital and I started receiving payments by the time I go home.  The doctors' reports at that time indicated I was in a terminal condition and death was imminent.  Almost every organ had shut down and i was a nice shade of orange.  I could have stayed on this forever but I chose to return to work with the assurance that it'd be easier if I ever needed assistance in the future.  I managed to work for 15 more years with few issues and then suddenly needed assistance again.  It took almost 4 years to receive full SSD again. 

I'm now back at that place where I feel I could/should work again.  Those closest to me are urging me not to which is strange considering I come from a strong Republican family.  I receive a decent amount and will eventually draw my federal and private retirements to boot.  It's nice not having to worry about insurance and prescription coverage but I'm feeling like I'm using the system.  On the other hand, I don't know if it's worth it to jeopardize my future.

I'm sure I'm not the only one who has struggled with this issue.

Thanks!
Greg

[leatherman]

I've tried to go back to work twice. Both times I ended up sick within 2 yrs and had to quit. Once I got burned by SSd for what they "overpaid" (their record keeping problem, not mine), had my check docked by a third for three yrs, and lost my home where I had lived for 14 yrs because I didn't have enough money with the docked check. While the working had given me something constructive to do, the amount I earned really only paid for gas to get to work, lunch while at work, and cable. Needless to say, losing what I lost compared against the little I gained taught me a valueable lesson.

Recently my ASO director and I talked about this issue of me, disability, and working again. I explained my past experiences and told her I'd rather be dirt poor and spend my time helping the ASO as much as possible (which gives me something to do AND gives back to the community), than risk losing my access to meds or risk nearly going homeless again.

took almost 4 years to receive full SSD again.

it seems you had a lesson taught to you too. How desperate did you get before you got benefits back? Would it be worth your time, your physical health, your mental health and your wallet if that situation occurred again? It seems answering those questions, and remembering what you went through last time should tell you whether you would be jeopardizing your future by returning to work again.

If your current situation really is more akin to mine (feeling fairly well, but being unemployed dampens your self-worth and gives you too much time with nothing to do) then perhaps you might want to check into volunteer work somewhere.

[wolfter]

Thanks Mikie.  Even as I run into old friends, the first question is usually; "so where do work these days?"
Work has always been important to me and I've achieved many successes along the way.  Guess I'm just in the mode of wondering where life is heading.  I can't imagine just sitting around collecting a check and benefits.  I NEED to be productive, and maybe volunteering is the answer again.  The neared ASO is 40 miles away and I have contacted them about possibilities there.

[leatherman]

the first question is usually; "so where do work these days?"

I hear that one all the time too. a person's occupation is a very defining element of their life. My answer is that I work for the ASO and I help people with their computers in their homes. (which I did a lot while I was in OH, but not so much since I moved down here)

I can't imagine just sitting around collecting a check and benefits.

ah, but it's so much easier to do just that when you're half dead and struggling to recover from PCP or some other OI. Not to mention the days when the PN makes just touching the floor the worst pain you've ever felt. I spent nearly 15 of the last 20 yrs very sick, so accepting the benefits was easy. Nowadays that I'm feeling so much better, it is annoying just "sitting around collecting a check"; but my lab work clearly shows that my numbers are precariously balanced, and as I said, I was burned by the system once before and I can't financially or healthwise risk that again.

The neared ASO is 40 miles away and I have contacted them about possibilities there.

Mine's 20 miles away; but then everything is far away here in rural SC LOL The recent surgery I had was a 75 mile drive one-way to Columbia. (yes, that's Columbia not Columbus. a word-mistake I'm making all the time down here. LOL but they're both state capitals and only 2 letters different. After 25 yrs in OH, it's just going to be a hard habit to break)

Am I remembering properly, was that ASO up there the one that wanted you to pay to apply to them??

Guess I'm just in the mode of wondering where life is heading.

that's a good thing. If you weren't wondering about the future and what you're doing, and where you're going, you'd probably be mired in depression. For many folks, just getting up and going to do something, finding a goal for their life, trying to accomplish something, is what they need to do to get a little self-esteem combat depression and all the troubles it brings with it.

In the long run of making this decision, I think you're going about it the right way by soliciting opinions. Opinions from us here, less in touch with your situation, and hopefully more objective; and those of your friends and family who know the situation and your resources. I hope you get enough opinions that you can make a good decision and I hope your decision works out well - either way of working again or not working.

[wolfter]

That's the same place that charges to become a volunteer.  It's only $20, so that's not a big deal.  It's the CATF in Columbus.

[phildinftlaudy]

Hey Wolf:

I always have mixed feelings when it comes to whether someone should return to work or not after being on disability.

I have been working full-time since being diagnosed almost 3 years ago - it is a struggle at times.  I am usually beat tired by the time I get home (after waking up at 6 am and getting home around 5:30 pm - with travel and all)

My "partner" had single digit cd4s when diagnosed 15+ years ago - he immediately went on disability and has not worked since.  His cd4s are around 1200-1300 consistently.  My cd4s have never gone higher than 740 and usually are around 580-640.  I definitely think that working full-time has an impact on them and on my overall health - and not in a good way. 

My partner goes through the samething with people always asking him where he works - which bothers him.  I told him he should either respond with "I'm on disability" or "I work from home."  If people want to ask follow up questions, such as why are you on disability or what type of work do you do from home - I am basically of the feeling that you either decide to tell them (if you are comfortable with that) or --- what I would most likely say is "Dayummm, you sure ask a lot of questions - and I am not comfortable answering them - particularly the ones that deal with my medical/disability issues."

I would think long and hard on whether to return to work - in terms of getting back on disability if you were to need to, the toll it may take on your overall health,etc.  You might also consider volunteering - there are lots of good organizations - not just ASOs but many nonprofits that provide a host of services that you might be able to volunteer for - or, I believe, you can work a few hours a week without it impacting your disability benefits and medical coverage.

Whatever decision you make, I wish you the best.  I hope you get a lot more feedback as this is definitely an important issue to many people - or may be at some point in their lives. --- Including mine.

[leatherman]

I believe, you can work a few hours a week without it impacting your disability benefits and medical coverage.

You can earn nearly $1k a month and still receive your benefits.

We consider your work to be services if you earn more than $720 a month in 2010 and 2011. 

After the trial work period ends, your benefits will stop during months your earnings are at a level we consider substantial, more than $1,000 in 2010 and 2011.

http://ssa-custhelp.ssa.gov/app/answers/detail/a_id/317/~/social-security-disability-benefit-earnings-limit
Working While Disabled - How We can Help
http://www.ssa.gov/pubs/10095.html#part5

However, if you work more or if SS doesn't track your earnings properly (as happened in my case) it can become a problem.

[denb45]

Hey Wolf:


My partner goes through the samething with people always asking him where he works - which bothers him.  I told him he should either respond with "I'm on disability" or "I work from home."  If people want to ask follow up questions, such as why are you on disability or what type of work do you do from home - I am basically of the feeling that you either decide to tell them (if you are comfortable with that) or --- what I would most likely say is "Dayummm, you sure ask a lot of questions - and I am not comfortable answering them - particularly the ones that deal with my medical/disability issues."

My partner & I just tell people were "retried" and we pretty much are, going back to work for both of us isn't an option with our age and failing health problems,, as we both make more than we would if we worked (or @ least here in New Mexico we wouldn't make what we made in CA.) we often wonder just how do most people live here as they aren't paid very much here in ABQ 

[wolfter]

I've been thinking of taking this opportunity to further my education.  I contacted OSU requesting information on their doctoral programs.  This was a goal pre HIV and I kinda feel I've got the opportunity to to accomplish that goal without the stress of working full time.

I'll definitely take some time before I rush into anything.  Thanks for all the input everybody.

[richie]

Wolf --

In my opinion, you have a relatively rare opportunity, so think hard about it.  Not all "work" requires you to get paid, and you can be just as fullfilled with a volunteer gig.   There are loads of organizations desperate for competent volunteers to keep going (lots of Aids orgs as well).  You can easily create a full-time career as a volunteer, knowing you have the security of your backup income.  You've paid into the system that provides this income, so your guilt is misplaced.  You paid into the system for the insurance, now you could collect it and be "productive" elsewhere.