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Author Topic: need some feed back on Social Security Disability  (Read 6715 times)

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Offline Lilybell

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need some feed back on Social Security Disability
« on: October 18, 2007, 04:40:26 AM »
Hello everyone, my name is Lily and I am coming here for some suggestions and some advise.  I have been HIV since 1989 and have been on disability since 1999.  I am finally on a good upswing and healthier than I have ever been.  I just had my hip replaced and hopefully after the rehab I should be able to go back to work.  I do get disability and LTD from my previous job.  I want to go back to work so badly.  So tired of being poor.  I do know that I want to do a small part time job first to test the waters, make sure I will stay healthy and just to see if I can handle it again.  I want to try and go back full time. 

Does anyone know anything about Social Security and what happens if you finally get the change to go off and go back to work full time.  If I go back to work for a full 6 months full time I will loose my LTD from my previous job for good.  When I got SS Disability they lowered the amount I was getting from the government because my job was giving me LTD.  I guess they want to make sure you stay poor LOL. 

Anyway my fears are what happens if I go back to work full time and say a year or 2 or 3 or 5 goes by and then I have to quiet due to an illness.  Will I get my full SSD??  I know I can call the SS offices but everytime I call I get a different story.

I Just don't know if I should work off the grid and continue as is?? or really try to go back to work.  Is it worth it.  I am only 40 and there is still so much I want out of life and I need money to get it. 

Anyway, anyone that has any suggestions on this matter, I could sure use some help.  Just so confused on what is best for me.

thanks for listening
lily

Offline bear60

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Re: need some feed back on Social Security Disability
« Reply #1 on: October 18, 2007, 10:18:16 AM »
Anyway my fears are what happens if I go back to work full time and say a year or 2 or 3 or 5 goes by and then I have to quiet due to an illness.  Will I get my full SSD??  quote LILY

IT seems that each of us has a lot of fear associated with the unpredictable nature of HIV.  The goal of some people is to live their lives as if HIV was not a part of it, but others are daily affected by some physical manifestation of the virus and/or the medication.  It seems to me you are the only one who knows what you need to do. If you are going to suffer emotionally or physically by going back to work then by all means stay on disability.
I dont know what else I can say about your situation
Poz Bear Type in Philadelphia

Offline bfreak

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Re: need some feed back on Social Security Disability
« Reply #2 on: October 19, 2007, 11:26:58 PM »
Hi Lily.

I'm proud of you for wanted to go back to work.  It takes a certain kind of woman want to do that.

Of course, if you go back on full-time work eventually you will lose your SSDI.  The good news is it won't happen right away.

The way it was explained to me is this: there is a Ticket to Work program for persons on SSDI.  I'm not very clear how this works.  Your best bet is to call Social Security at 1-800-772-1213. ???

There is also another program called Trial Work Program.  I've gotten in with Vocational Rehab, so I'm not eligible for the Ticket to Work.  I am eligible for TWP.  TWP allows you to work for nine months.  You can have any job, part-time or full-time, and or in any amount of money.  This will not, I emphasize not, affect your benefits during this period.  After this nine months you then decide what you are capable.  After nine months they will allow you to work and earn up to $900 before you benefits are affected.

I hope this helps you.
Alan

Offline leatherman

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Re: need some feed back on Social Security Disability
« Reply #3 on: October 20, 2007, 01:04:16 AM »
Hi Lily,

I can't really say anything than I can understand your situation and I'm just as confused as you are. Our stories have some similarities.

I have been HIV since 1989 and have been on disability since 1999.  I am finally on a good upswing and healthier than I have ever been.

Anyway my fears are what happens if I go back to work full time and say a year or 2 or 3 or 5 goes by and then I have to quit due to an illness.

I am only 40 and there is still so much I want out of life and I need money to get it.

I got my poz results in 92, and was on disability by 98, after a bout of PCP. Now I'm actually healthier than I've been in the last 15 yrs! Considering I'm 45, nearly been dead from "teh aids" about half a dozen time and now doing so well, I'm starting to feel guilty for not working. But, because I tried working once before and DID get sick all over again (and screwed by SS), I'm really scared to try it again.

Quote
  Will I get my full SSD??  I know I can call the SS offices but everytime I call I get a different story.
I got a different story several times too when I was offered a part-time computer geek job and trying to decide if I was going to really be "well enough" to work again. After informing SS, I worked for about 3 yrs, until the worst happened - I got very sick again. (My own fault for not complying with a regimen of meds that made me puke every day; but that's another story LOL)

4 years later from recovering from that second bout of pneumonia, SS notifies me that from this-month-to-this-month, and from this-month-to-this-month, I made too much money all those years ago and I'm going to have to be docked now. At first they were going to keep my entire SS check (my only income since I had become sick and wasn't working again) for a whole year! I got them to arrange a payment plan though, and at this point I'm about halfway through a three yr pay-back time with my check cut nearly in half.

That check cut eventually meant I could no longer pay my house payment; and finally pushed me and my boyfriend into living together (like we should have been doing for last three yrs anyway ;) ) Still it was very sad event for losing the house that I had been able to hold onto for 13 yrs after my late partner passed away. It just didn't seem right that I could have outlived him by so long, suffered so much sickness, then gotten healthy enough to work a little bit of part time to simply lose "our" home - the very home in which my partner had drawn his last breath, lying in a bed in the living room.

You know the only thing "extra" I really had all those months of part time working (that ended up getting me docked) was cable TV. Gosh I do so miss my Sci-Fi & MSNBC now!  But I guess without knowing it, in the end, I had just traded away my house for a couple of yrs of TV.

Quote
I Just don't know if I should work off the grid and continue as is?? or really try to go back to work.  Is it worth it.   

Since then, I've done some odd jobs under the table. But even though I'm feeling better, I'm very worried about how another job would affect my finances again, or eligibility for my meds.  It's catch-22. If I don't take my meds, I get sick. If I take my meds, I'm healthy enough to work. But if I work, I don't make enough to get meds. Then I'll get sick all over again; and I've had enough of that.

I'd love to be able to really give you some good advice on what to do and how to plan it to make it all work out right; but I just don't know that answer myself yet. I can sympathize with you though, and promise that if I ever do figure out the answer, you're on the top of my list of people to call. ;) :D

mikie
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline ubotts

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Re: need some feed back on Social Security Disability
« Reply #4 on: October 20, 2007, 11:42:21 PM »
Try to get a job off the books..this way you wont lose anything... ::)
Live Love Laugh and dance like no ones watching.
Laughter is the best medicine, so try to have a laugh everyday..Even if your not feeling your best, think about something that was funny at one time in your life and work with it..   :o)

Offline dgr20002

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Re: need some feed back on Social Security Disability
« Reply #5 on: October 29, 2007, 10:09:30 PM »
Well I had a partner that was in this situation. He got his ssdi because of toxo. Approved on the first try but after getting the money for a few months realized he could not afford to live on what he was getting. There is a return to work program that the SS people have and it allows you to make up to X amount of dollars without affecting your SSI income. You can do this for a certain number of months to see if you can handle it. f not, then you can keep what you had with no consequence. Then if you can handle it and want to return to work full time you can and after a period of time you would have to completely reapply for benefits if something happens.

Since you are getting LTD from your previous employer that would no doubt cease as soon as you told them you were working. They have no reason to pay you if you can work. And there is likely no way to ever get that benefit back if you lose it.

As harsh as it sounds the system will screw you if you try to better yourself it seems. If you can find a way to make money under the table that is the way lots of people survive. It isn't easy to do. Some people have even said they feel better off not working because if you have an income and you owe big money for a medical bill or somehting then you will owe it. If you do not have it then you can't pay it and they won't hound you over it.

I have said all this really to tell you that I think you should look long and hard at what you have and what you want to have. Is work the only way to get what you want? I don't know what you went through to get approved for the benefits you get now, but could you do it again? Do you want to?

Dave

Offline lipoenvy

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Re: need some feed back on Social Security Disability
« Reply #6 on: November 03, 2007, 10:45:11 AM »
Lily,

I, too, wished to move up to a higher level of poverty and decided to try going back to work.  In the end I found I was not up for full-time work and have opted for “working while disabled.”

My advice about SSDI is:  be very very careful, and be very informed before you start working.  Read the Social Security Red Book carefully:

http://www.socialsecurity.gov/redbook/eng/main.htm

I got very good advice from Positive Solutions, an organization in Seattle which counsels people on disability who are considering going back to work.

First, don’t try working during the first 12 months of disability; this can result in termination of benefits.  (Doesn't apply to you, since you've been on disability since 1999.)

After 12 months of disability, you are allowed a 9 month Trial Work Period, which includes any month during a 60 month period when your earnings are above a certain level ($640/month in 2007).  The 9 months are not necessarily consecutive; they can be scattered.  SSDI payments continue during the Trial Work Period no matter how much you make.  However, if you complete a 9 month Trial Work Period, the next phase kicks in: the Extended Period of Eligibility, a 36 month period during which your SSDI payments continue only during months in which you earn below what they consider Significant Gainful Activity (SGA) -- $900/month in 2007.  After the 36 months, I believe your disability payments are terminated, and if you need to go back on disability, you need to reapply.  If there’s any doubt about your continuing ability to work full-time, the best advice seems to be:  don’t complete a 9-month Trial Work Period!

There are other issues, such as continuation of Medicare coverage and the effect of earned income on any long-term disability insurance payments you may have.  These must be considered, too.  There are deductions allowed in determining the above TWP and SGA amounts – expenses which are directly related to your disability which are necessary to allow you to work, and if you receive unpaid help with your work, what the cost of that would be, for example.  If you end up self-employed, the limits are on your personal income, not gross business income.  Personal income equals business income minus business expenses.  Keep detailed records of all income and business-related or disability-related expenses!  And as my orchestration teacher taught me, never give your only copy of anything to anyone.

If you have income, report it very promptly to your local Social Security office.  For the first few months, take the report in person to the office and have them date-stamp a copy. 

Social Security holds the purse strings, and they can screw you over in their slow bumbling way very easily.  I made mistakes, over-reported my income, and had SSDI payments terminated.  The appeal process dragged on absurdly long.  Even after SSA admitted that my benefits should not have been terminated, it was six months before payments were restarted!  In all, I went 10 months without SSDI payments.

Do not count on anyone at Social Security to be fully informed of any of this.  And especially, don’t expect them to volunteer it.  The people who answer the national toll-free help lines are particularly useless, in my experience.

Good luck, and be careful!



Offline perspiry

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Re: need some feed back on Social Security Disability
« Reply #7 on: November 04, 2007, 04:19:36 PM »
Lily,

My situation is somewhat similar and what was sufficient to live on in 2002 when I went on SSD and private LTD no longer covers monthly expenses.  I may have to buy domestic caviar instead of Russian... ha ha.

If I earn 10 cents I'm supposed to report it to MetLife, my LTD insurer, so they can deduct it from the next check.  With an incentive like that and the fact I cannot perform any type of work for more than a few hours before exhaustion fells me I'm not looking for work -- a part-time job would probably not even cover the LTD check. 

As for Social Security Disability lipoenvy's advice is on the mark.  If you go back to full time work your SSD/I payments will eventually stop but if you are unable to work again you can apply for SSD again.  As you obviously know, your LTD is with your former employer and no new employer will cover you so if you had to go back to SSD you'd be without the pittance LTD pays you now.  The other big issue is obviously health care and to be covered you'd probably need to work at a company large enough to have group coverage.  Smaller companies usually cannot pay the premiums or at least that's my experience.  Even with group coverage more and more employers are putting the cost on employees and insurance companies are offering less coverage for higher premiums.  A friend jut got switched to a new, more expensive plan with a $2000 deductible and higher co-pays. 

I dislike advocating actions that could get you in trouble but advise you to find a job that will pay you under the table, as someone else suggested.  I know several people who were not as lucky as I in that they became disabled at an early age (I was 46) and didn't qualify for SSD so got SSI, which must be calculated based on the cost of living in a cardboard box.   As each one has gotten better on meds they have found part-time unreported jobs to help make ends meet.  None of them has been caught but that is a fear.

I wish you the best of luck.

JA
If I'd been thinking I would have chosen Tangina as my forum moniker.

Offline mudman8

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Re: need some feed back on Social Security Disability
« Reply #8 on: November 05, 2007, 03:42:39 PM »
hi, I'd reccommend a benefits counselor  if you can find one.  When I talked to one here, I was told I couldn't make more than $600 and I only get $623 because I was so low paid in my career.  If you do go by a SS person's info get it in writing. If it's wrong they won't accept an excuse of "but so and so told me on the phone....."

I tried switching my work to computer graphics, but that was a bust as the field is flooded.  Then I took a spring sales job at a nursery. I was on my feet for 7 hrs and no breaks and lunch was irregular.  I also realized they only let me work 30-32 hr weeks so I wouldn't acrue benefits.  After 3 months trial they let me go,(they'd just used me for spring rush).  I had lost 30# running around, and my Tcells had cut in half. My Best friend said it was a blessing in disguise I was dumped.

I still have feelers out for jobs, but none that I find have benefits. I also can't figure out a part time job that keeps me under $600/mo.  Possibly bagging groceries or weekends at a video store.  Any other ideas anyone?
Life is analog

Offline pozniceguy

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Re: need some feed back on Social Security Disability
« Reply #9 on: November 05, 2007, 06:00:24 PM »
Hey Mudman..If you can still do the landscape work...I have hired some personal help at the local Nursery/ Lowes....if you are not obnoxious you can usually find some one who would like little help with the weekend project and will pay cash...I have done this ( hired help) several times..no benefits but usually short hours and cash money
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline brianbrant

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Re: need some feed back on Social Security Disability
« Reply #10 on: November 06, 2007, 04:16:56 PM »
I’ve always considered HIV (in my case AIDS) to be, at the very least, a part-time job.

You feel well enough to go back to work because you’ve devoted time and effort to get to this point.  I’m in year eighteen and am exactly one week away from turning 61.  This past sentence was difficult to write because the years have flown by since my diagnosis and I’m about to become a senior citizen.  But I’ve gotten to this point because of my belief that AIDS demands we adopt a philosophy, and a damn selfish dogma at that.  The quandary is how to set priorities that allow us to live well enough to make the sacrifices required easier to handle.  For instance, I’ve never missed my exercise regimen, except post-surgery, since my early 20s.  I used to thrive on the effort, but over the past several years it has become much more difficult, sometimes unbearable.  But I never, ever would consider giving it up.  It’s part of my formula – my dogma, if you will – for survival.

Work-wise I’ve been in your shoes and faced exactly the same frustrating and depressing options and questions.  I tried to work part-time in my field when I felt well, failed and got sick, took months to recover – for what?  I wouldn’t consider taking a job with reportable income for any reason.  You may have to eat rice and beans a little more often than you’d like, but the stress and day-to-day demands of a job will take a toll quickly, and an under-the-table arrangement at least allows you to ditch the thing immediately and won’t affect any of your current sources of income, modest though they may be.

Your first priority is your health.  You are already stressing.  Stress is the invisible and uncontrollable menace to those of us with this virus.  Eliminate the questions regarding SSD - the guidelines, limits, inconsistencies; there is no future in following that course.

The reason my response is so absolutely absolute, rather than offering the same options - agonies which are vexing and stressing you - is because you may oscillate in this current unyielding cycle of Should I?  What if I?  But then there's this to think about...  Huhhh?

Well, partner, you've just hustled this mess up into steamin' bowl called your second job!   Give this too much more consideration and the question will be moot...you won't feel well enough to consider going back to work - no how, no way. 

You’ve got a job… and you’ve clearly been successful at it.

Offline atxpozguy

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Re: need some feed back on Social Security Disability
« Reply #11 on: November 08, 2007, 03:48:50 AM »
I would love to return to work as I could make 5 times the benefit I receive thru SSDI, but would receive no health benefits and probably wouldn't last a month because of the stress involved in working with complete morons and self-centered employers.

Just yesterday, I received a letter from Social Security that stated my SSDI income is between 135% and 139% of the Federal Poverty Level and included a 17 page document on the appeal process for this determination. For what I thought about for more than 4 hours why would I want to appeal this.

Later after reading the entire package of letters, this had to do with the  Part D Drug Assistance which in 2008, I will receive a 110% subsidy for the premium with no drug annual deductible or co-pays.

Considering the cost of "all" my meds, I think I would make a foolish mistake to even consider returning to work, as I will agree with some comments that trying to stay below $600 a month would be hard considering the type of work that could consist of.

I feel for some people, even friends of mine that draw a small ssdi check of a $214 a month that are barely surviving. I make the best of life with the $1072 I get and still find myself staying at home talking with my 3 manicans I have sitting in chairs or on the couch to break the loneliness.

I to have been noticing how the years just fly by, considering I have been living some the many experiences of hiv since 82, how I am still here and many of my friends gone, baffles my mine..

30 years poz with no expiration date

atxlovingqueer@gay.com
atxniceguy@gmail.com

Diagnosed HIV 1983
Diagnosed AIDS 2001

As of Jan 17, 2012: VL <20k CD4 183  28.5%

Offline OneTampa

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Re: need some feed back on Social Security Disability
« Reply #12 on: November 18, 2007, 11:53:51 AM »
I find this discussion thread of great interest.  My story: HIV+ for 21 years. Never ill to interrupt work. Worked at a job with benefits the entire time.  Held one one job for 27 years. Now in a new job with benefits including long term and short time disability and continuation of health insurance after coming off COBRA for five months of consulting.  My question is if I become ill while in my current job, I would assume I can go on disability as would be the regular course. Or, if all goes well, continue to work to age 65, and simply retire with Social Security. I am 55 now.

I too have a home with a mortgage. My child is grown and my long time partner died 15 years ago.

I also share the concern about becoming ill, having my income greatly reduced, wading through paperwork,  and the challenge of being able to pay my bills if I can no longer work.

 
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline allopathicholistic

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Re: need some feed back on Social Security Disability
« Reply #13 on: November 24, 2007, 10:31:34 PM »
I find this discussion thread of great interest.  My story: HIV+ for 21 years. Never ill to interrupt work. Worked at a job with benefits the entire time.  Held one one job for 27 years. Now in a new job with benefits including long term and short time disability and continuation of health insurance after coming off COBRA for five months of consulting.  My question is if I become ill while in my current job, I would assume I can go on disability as would be the regular course. Or, if all goes well, continue to work to age 65, and simply retire with Social Security. I am 55 now.

Hi Tampa, I heard that SSDI monthly benefit$s are much higher than retirement Social Security (SS) and that if you get SSDI and continue to live to/beyond retirement age, you continue to receive the SSDI amount (i.e.: the better, higher amount) but it will be "called" SS.

Sounds silly to me if the only thing that changes is the name, like, what's the point? I can only imagine the government might think older people are getting ready to "retire" from life, hence the government's preference for a nice/neat universal moniker of SS, giving them a fast way to analyze older citizens for Big Brother Brainstorming or bean-counters and stuff like that. I don't know. And I don't know if the stuff I've been hearing is true or false. Thank Heavens for discussion boards. I'm glad you find this thread interesting because I do too.

edited to add: Big Brother Brainstorming
« Last Edit: November 25, 2007, 01:20:28 AM by allopathicholistic »

Offline lipoenvy

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Re: need some feed back on Social Security Disability
« Reply #14 on: November 26, 2007, 10:35:13 AM »
OneTampa,

Your Social Security retirement benefit will depend on when you retire.  Full retirement age depends on when you were born.  (Yours is probably age 66.) Your benefit increases the longer you wait to claim benefits, and depends on a complicated formula taken from your highest-earning 35 years.

Disability benefit also is calculated from previous earnings, but doesn't depend on age.

Take the guesswork out of it and request an estimate of retirement benefits and an estimate of disability benefits from Social Security.  It's a routine calculation and it's one of the things about which you can probably trust them, especially since it will be in writing.

Yes, disability paperwork is a lot to wade through (you would never want to try it without help), and Social Security won't go through its long process to approve disability status until after you stop working, and payments don't begin until several months after you've become disabled.  Going on disability is a bit like jumping off a cliff before you know if you have a parachute.  Applying for retirement benefits is more routine.

Stable health is, of course, the best option (I believe it's the only option under the Ronald Reagan Health Plan), and may you continue to enjoy it.  But it's good to know the disability option is there if needed.

Offline DCGUY2007

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Re: need some feed back on Social Security Disability
« Reply #15 on: November 27, 2007, 05:42:42 AM »
Hi Lily,

I helped my ex get SSDI years ago. We have remained good friends and I have followed his frustration and anger when he started back to work.  Be careful with SSDI. Do a lot of research. Sometimes people in the SSDI office may tell you one thing only for you to find out a year from now that your SSDI is about to be cut off completely. This happened to my ex. He got a letter a year after he started working extra hours.They were going to cut off his SSDI completely. He was very upset. He could work extra hours but there was no way he could work fulltime.  Fortunately he worked out a payment plan with SSDI for the extra hours he had  worked and still recieves SSDI although less then before. But they kept him guessing for months on whether or not he would be cut off completely. The thing is SSDI will let you start working more hours and seem to not keep track of how many hours you have worked until a long time has passed. Then all of a sudden you receive a threatening letter.

Check and see how many extra hours you can work and still receive SSDI. My ex had to get a lawyer who told him from now on he should  make sure he remains well within that amount of extra income the SSDI will allow. The lawyer suggested that it would be even better if he were much lower in extra income then allowed by SSDI.

It is great you want to go back to work. I just know from assisting my ex that it is time consuming and can be frustrating dealing with SSDI. I hope everything works out for you. Wish you the best  :D
« Last Edit: November 28, 2007, 01:35:57 AM by DCGUY2007 »

Offline allopathicholistic

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Re: need some feed back on Social Security Disability
« Reply #16 on: December 18, 2007, 10:34:20 AM »
My advice about SSDI is:  be very very careful, and be very informed before you start working.  Read the Social Security Red Book carefully:

http://www.socialsecurity.gov/redbook/eng/main.htm


Dear everyone, be on the lookout for updates to the Red Book webpage now that 2007 is drawing to a close.

Thanks LE for the link.

I agree; SSDI recipients must be extremely careful because all your choices, actions and "reasons why" will be put under the government's microscope. Keep track of everything privately including your rationale for each decision including state of mind. Share the privately kept records only if your integrity is questioned, and chances are, it will be questioned because SSA has dealt with so many moochers. I guess they need statistics to engineer what they consider the profile of the "model citizen", or "model disabled citizen"  ???
« Last Edit: December 19, 2007, 08:57:27 AM by allopathicholistic »

Offline denb45

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Re: need some feed back on Social Security Disability
« Reply #17 on: December 25, 2007, 03:26:19 PM »
I Just don't know if I should work off the grid and continue as is?? or really try to go back to work.  Is it worth it.  I am only 40 and there is still so much I want out of life and I need money to get it. 

Anyway, anyone that has any suggestions on this matter, I could sure use some help.  Just so confused on what is best for me.

thanks for listening
lily

 I have been  POZ for about 18 yrs now, but back in the late 90's I started MEDS, till I couldn't take the Stress-on my job anymore, had 3 IO's and it damm-near KILLED ME, so, I had to go on SSDI back in 1998, I too have toyed with the idea of going back to work, but, but if i do, I will loose my LTD Pension (from my last Job) and my SSDI and I would have to explain why I haven't been to work in 8yrs. also, Health benefits would be a problem, having AIDS, would be as well, and most Employers just won't hire you, if you have Aids, I know this is illegal in some states, but if your honest about your status, they can always find a way NOT to hire you because of your status, (I 've had this happen to many of my POZ Friends), who tired to find a job, so, with all of this BAD NEWS, I don't think its such a good idea, but hey, if you can do it, and you will make 2 to 3 times what you would make on SSDI with all the Health benefits, and you can handle being honest about your status in the work place, then GO FOR IT ,but I would think long and HARD about doing this, if I were you.........as this my NOT be as easy as you may think it is, something to consider?
« Last Edit: December 25, 2007, 05:20:58 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

 


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