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Author Topic: Work or don't work? BF never wants me to stop  (Read 68041 times)

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Offline megasept

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  • Posts: 478
  • Steven here...
Re: Work or don't work? BF never wants me to stop
« Reply #50 on: October 25, 2009, 12:21:34 am »
Quote
...the people who have been around for 20 years had no choice but to immediatly go on disabilty and get things in order... what do we do that got this in the 2000's?

 ???  POZ 19 years here and lucky enough never to have gone on Disability.

i also got Lipo (almost 9 years ago), now greatly improved---more of a symptom than a threat to health. presently self-employed and self-insured. there is a fatalistic aspect to your post, and others have pointed out the mixture of "issues".

enjoy all of life you can, now, tomorrow, and the day after.

good luck and good health!
 8)  -megasept

Offline stella8940

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  • Posts: 14
Re: Work or don't work? BF never wants me to stop
« Reply #51 on: March 18, 2010, 11:42:01 pm »
Hey there, So I have been poc for 20 years and have been thru the fear...Lipo is a side effect, its not going to kill you! Get a lot of excersize, dont use the bad naughty drugs anymore and if I were you dont go on disability until you have no other choice!
SSDI does not fool around, they are going to want concrete proof that you cant work anymore and they will send you to a gazillion specialists to prove you are wrong, then they will deny your claim and you have to start all over again.
As long as you take your meds and you stay healthy and arent messing around with other drugs and drinking you should be fine for a very, very long time!
Good luck!!! ;)

Offline beaconpr

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  • Posts: 11
Re: Work or don't work? BF never wants me to stop
« Reply #52 on: August 21, 2010, 03:41:49 am »
I have been tinkering with the possibility of disability myslef, even a doctor I see suggested it. Problem is I love my job. I studied hard to get my degrees and to work in what I love. Job is challenging and takes a lot of energy. But right now I'm at a point of considering it again. I paid off my mortgage and I just pay utilities and taxes. I need to wind down...

Offline GSOgymrat

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  • Posts: 5,122
  • HIV+ since 1993. Relentlessly gay.
Re: Work or don't work? BF never wants me to stop
« Reply #53 on: August 21, 2010, 09:34:51 am »
I have been tinkering with the possibility of disability myslef, even a doctor I see suggested it. Problem is I love my job. I studied hard to get my degrees and to work in what I love. Job is challenging and takes a lot of energy. But right now I'm at a point of considering it again. I paid off my mortgage and I just pay utilities and taxes. I need to wind down...

Will you qualify for disability? HIV alone, or even and AIDS diagnosis, isn't going to be sufficient. From what I have seen it is often difficult to get on disability.


Offline tednlou2

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Re: Work or don't work? BF never wants me to stop
« Reply #54 on: August 22, 2010, 12:48:24 am »
Will you qualify for disability? HIV alone, or even and AIDS diagnosis, isn't going to be sufficient. From what I have seen it is often difficult to get on disability.



Something like 80% get denied on the initial application and then the first appeal.  Most have to go before a judge.  I suppose it depends on the judge you get.  I know some who've had an AIDS diagnosis, but rebounded without meds who got SSDI.  They also had depression and back issues, so maybe that helped.  It probably does depend on the judge.  If you don't have a job and an AIDS diagnosis, to get ADAP you are required to sign up for either SSI or SSDI-- at least here in KY.

Offline AlanBama

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Re: Work or don't work? BF never wants me to stop
« Reply #55 on: August 24, 2010, 02:53:29 pm »
I went on disability when I was FORCED to, kicking and screaming.   I hated it then, and now after 15 years of being on it, I still hate it.  Don't get me wrong, I am very GRATEFUL for it.   But you become a different person when you go on disability.   It may come about gradually (as it did in my case) but I think it comes for most folks -  the shift from the "plus" column to the "minus" column in life.   I'm not good at putting it into words, but it's a dignity thing....being on disability, depending on ADAP and Ryan White for meds, Charity Care for medical care....it all SUCKS.   I would so much rather be working full-time, and having good insurance, if I could.

It is my understanding that it is extremely difficult to qualify for SSD nowadays, with HIV.   I think you just about have to be at death's door to get it (and then you have the 6-month wait, and then two more years for Medicare....)

If your lipo is bothering you, talk to your doc; change meds.   Take some action to help as much as you can to keep it at bay....but so what if people talk?  Let them.  Believe me, they won't be around to pay your bills when you need help.    I am blessed that I was an accountant/auditor for years, with good jobs and high enough pay to able to collect a pretty good SSD monthly amount (compared to most people I know); it sure beats SSI.  But it is still no "comfortable" life.  And when you try to do better for yourself, and possibly earn extra money, your benefits end up being taken away (for example, it may put you slightly over the limit for some Charity program).

My advice is to KEEP WORKING !

Hugs, Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline onemoretime

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  • Posts: 142
Re: Work or don't work? BF never wants me to stop
« Reply #56 on: September 11, 2010, 02:34:48 am »
Hey guys!! well its been a year since i posted this.   i do love my job...i like having good health insurance// took the advice alot of u gave me.  Im only 43 and my numbers are great so i think i need to just keep playing it quarter by quarter.   my bf is wonderful.   I do have some issues starting.  i am getting some nerve damage in my wrists.  my altner nerve is compressed so my pinky is numb fore like 2 weeks/   gettng pt every day all last week to get it to comme back.   prolly wont need surgery.  i lander if this coould be frpm atriplaz??   prolly not right?   

thanks u guys life is good
08/04 diag 490 cd4 vl 50,000
10/25/05 436 50,513 hvb 1.1 billion
12/13/05 truvada sustiva
02/16/06 742 und, hpb 63,000
04/27/06 740 und hpb 60,000
01/05/07 458 und hvb und
03/08   470 undetectable still on atripla. Non smoking (chantex)
08/08 cd4 550 undetectable hiv, Hep B UND. Atripla
06/09  cd4 444, vl undetectable testo 130
09/09/09 CD4 687 46% UND  Testo 213 started androgel
10/12/09 cd4 682 46% und testo 597
01/12/10 cd4 842 48% und testo 434
041010 cd4 693  53% testo 492
100410 cd4 568 48% testo 523
012711 cd4 523 hcv 56 testo 596
083011 cd4 280 Hcv/HIV und
042912 cd4 158 hcv /hiv und, was on hep c for 11 months. do have ssdi filed and getting LTD
061912 cd4 151, bactrum, hep c and hiv und
071712 cd4 287 52% HIV HCV und
112012 cd4 520

Offline atxpozguy

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  • POZ+ 32 year milestone reached for Austin man
Re: Work or don't work? BF never wants me to stop
« Reply #57 on: October 11, 2010, 06:42:05 am »
I had no problems being approved for SSDI, a phone interview, faxed over some documents they requested and within 30 minutes, was granted SSDI. I already knew there was two year waiting period before I qet qualify for medicare, but it was those within those two years I fought many battles to stay alive.
32 years poz LTS with no expiration date

Diagnosed HIV 1982
Diagnosed AIDS 2001

As of June 2015, VL <20 CD 435 26%

Currently taking a daily total of 17 meds while only two meds for AIDS, the rest for other body organs effected by years of retrovirals. Diagnosed with Lung Cancer 2012, COPD Stage 4 2015, IBS 2013, Chronic Cystitis, Chronic Renal Failure, Hearing Loss, Depression and everyday comes with different health episodes which has sent me to the Er via EMS on a regular basis.  My quality of life has been impacted dramatically.

Offline red_Dragon888

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  • Love and Be Love in Return
Re: Work or don't work? BF never wants me to stop
« Reply #58 on: October 29, 2010, 08:40:06 am »
Sorry if I am repeating what anyone else says but one, drop that asshole bf for he is a user.  I know I do not know him personally but if you are getting sicker and he just wants to maitain his living standard he is not looking out for you, just himself.   Two, go to GMHC in NYC site http://www.gmhc.org/ and make an appoitment with Alexandria, best to email her, email AlexandraR@gmhc.org  who I think will help you well for information about this topic.  I know of a person who has a condo and she helped him to keep it for she is well verse in financial, social security and HASA matters..

Good luck
Black_Dragon888
http://www.youtube.com/watch?feature=player_embedded&v=I3ba3lnFHik

Off Crystal Meth since May 13, 2013.  In recovery with 20 months clean time.

Offline red_Dragon888

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Re: Work or don't work? BF never wants me to stop
« Reply #59 on: October 29, 2010, 08:41:03 am »
Sorry if I am repeating what anyone else says but one, drop that asshole bf for he is a user.  I know I do not know him personally but if you are getting sicker and he just wants to maitain his living standard he is not looking out for you, just himself.   Two, go to GMHC in NYC site http://www.gmhc.org/ and make an appoitment with Alexandria, best to email her, email AlexandraR@gmhc.org  who I think will help you well for information about this topic.  I know of a person who has a condo and she helped him to keep it for she is well verse in financial, social security and HASA matters..

Good luck
Black_Dragon888
p.s. bring a note book for she will tell you everything you need to know.
http://www.youtube.com/watch?feature=player_embedded&v=I3ba3lnFHik

Off Crystal Meth since May 13, 2013.  In recovery with 20 months clean time.

Offline beau1200

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  • Posts: 17
Re: Work or don't work? BF never wants me to stop
« Reply #60 on: May 13, 2012, 04:57:34 am »
I had no problems being approved for SSDI, a phone interview, faxed over some documents they requested and within 30 minutes, was granted SSDI. I already knew there was two year waiting period before I qet qualify for medicare, but it was those within those two years I fought many battles to stay alive.

I had the same result, except no phone interview, my doc faxed some info in and I was granted SSDI within a week. 

Offline onemoretime

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  • Posts: 142
Re: Work or don't work? BF never wants me to stop
« Reply #61 on: June 29, 2012, 06:21:52 pm »
062912   checking in again... been a horrible year with hepc treatment... just ended the 11 months of interferion/ribaviran/teleprivir)   prochrit and 3 blood transfusions later...and now 2 weeks off it... i have LT D from work and they have allsup helping me with ssdi cleam, currently in step 2.... doing everythng i can do get approved at this step. 
08/04 diag 490 cd4 vl 50,000
10/25/05 436 50,513 hvb 1.1 billion
12/13/05 truvada sustiva
02/16/06 742 und, hpb 63,000
04/27/06 740 und hpb 60,000
01/05/07 458 und hvb und
03/08   470 undetectable still on atripla. Non smoking (chantex)
08/08 cd4 550 undetectable hiv, Hep B UND. Atripla
06/09  cd4 444, vl undetectable testo 130
09/09/09 CD4 687 46% UND  Testo 213 started androgel
10/12/09 cd4 682 46% und testo 597
01/12/10 cd4 842 48% und testo 434
041010 cd4 693  53% testo 492
100410 cd4 568 48% testo 523
012711 cd4 523 hcv 56 testo 596
083011 cd4 280 Hcv/HIV und
042912 cd4 158 hcv /hiv und, was on hep c for 11 months. do have ssdi filed and getting LTD
061912 cd4 151, bactrum, hep c and hiv und
071712 cd4 287 52% HIV HCV und
112012 cd4 520

Offline LiveWithIt

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  • Posts: 535
Re: Work or don't work? BF never wants me to stop
« Reply #62 on: July 01, 2012, 01:59:58 am »
If and when you do decide to try to go on disability take the savings out of your bank and put it in a safe deposit box in a bank.   Try to do the same with your 401K and take a penalty if you have to.  Chances are you will need the money to make ends meet when you do go on disability.  And it's not as easy as it sound.  SSD, Social Security Disability is not that easy to get because of HIV.  If you need to take money out the bank and have a lot in it never take out more than say $9500 at a time, if you take out $10K you will have to fill out a form. 
« Last Edit: July 01, 2012, 01:51:23 pm by LiveWithIt »
Pray God you can cope
I know you have a little life in you yet.
I know you have a lot of strength left.

Offline buginme2

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Re: Work or don't work? BF never wants me to stop
« Reply #63 on: July 01, 2012, 10:22:55 am »
take the savings out of your bank and put it in a safe deposit box in a bank.   Try to do the same with your 401K and take a penalty if you have to. 

That is the worst advice I have read on here in a long time.
Don't be fancy, just get dancey

Offline LiveWithIt

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Re: Work or don't work? BF never wants me to stop
« Reply #64 on: July 01, 2012, 12:46:42 pm »
That is the worst advice I have read on here in a long time.

Maybe it's better that he keep the 401K and money in the bank and when he needs help it will all be gone in one month when they tell him he needs to use it to pay for him medical costs, and then he can qualify for assistance.
Pray God you can cope
I know you have a little life in you yet.
I know you have a lot of strength left.

Offline beau1200

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  • Posts: 17
Re: Work or don't work? BF never wants me to stop
« Reply #65 on: July 02, 2012, 12:31:43 pm »
buginme..... and the person that posted the initial questions about SSDI, money and the BF issue.  (sorry there are so many posts, I can't find the original one)

Regarding suggestions with savings and 401K. I don't know of any financial expert, CPA, broker, attorney, or doctor for that matter that would make this kind of recommendation.  (I'm not saying one of those professionals did). 

Regardless of your current health issue, you should NEVER take from your 401K or savings.  EVER.  If I remember correctly, one of the initial concerns was that you might be having some issues with your health and wondered about SSDI. 

The most IMPORTANT thing to do is include your doctor.  It is true that it is harder to get SSDI based on your HIV status alone.  I would be willing to beat that you are having other issues in addition to your HIV status.  If you're dealing with depression during this time, have trouble concentrating or focusing that should be on the application for SSDI, your loss of feeling or nerve issues should be listed, if you've lost weight, that should be listed.  Basically any and every health issue you are having or have had within the last year should be on the application for disability. 

Ask yourself, with or without your BF,

"Do I want to focus on being a healthier person that is HIV+, or do I want to keep the stress of work and the BF that kills my T-Cells daily?"

That's helped me to be a little more accepting of disability.  Everything you do can either build T-Cells and improve your health, or kill T-Cells and cause you to have more health issues. 

When I went on SSDI, much like AlanBama, I went Kicking and Screaming.  When I found out I was HIV+, many years ago, I thought I would live my life to the fullest and one day, I would just die.  I never thought I would have to consider SSDI.  I worked to hard all my life and reached a level of success I didn't think was possible.  Like AlanBama, almost 4 years later, I am grateful I did apply for SSDI, and was approved almost as soon as they got the paperwork. 

I was shocked.  I understand that over 80% of SSDI claims are denied.  That's why you should get your doctor involved.  My doctor was key in supporting me during the process, making sure that ever issue I've had in the last year or two was on that application. 

AlanBama hit the nail head regarding the stigma of SSDI.  You go from productive, successful and proud to almost embarrassed about being on disability.  What's helped me is realizing that I can't keep doing what I was doing work wise and with my partner of 13 years, if I wanted my health to get better.  Focusing on my health without as many distractions has been amazing. 

As hard as it was, I had to learn how to have a new focus, a different career being disabled.  It's hard when someone asks, "What do you do for a living".  Frankly it's not their business, however, I usually answer by explaining that I'm in the process of a career change and currently volunteering with a local gay youth program.  Which is true. 

Sorry to run on, but seeing that someone recommended getting your savings and liquidating your 401K, just got me on going crazy!  Having the savings and my 401K has helped to eliminates financial stress, knowing that if all else fails, that money will be there. Just remember there are a ton of things you can do without closing out your 401K and paying the penalties. 

I hoped this helps, again, sorry for running on and on. 
Best Wishes!

Offline LiveWithIt

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  • Posts: 535
Re: Work or don't work? BF never wants me to stop
« Reply #66 on: July 02, 2012, 01:10:10 pm »
If you do decide to apply for SSD even if you are turned down there are lawyers that will fight for you and I think SS has to pay for it I believe, it may depend if you can pay for it or not.  Once you are approved you should get retroactive money from when you originally applied.
Pray God you can cope
I know you have a little life in you yet.
I know you have a lot of strength left.

Offline onemoretime

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  • Posts: 142
Re: Work or don't work? BF never wants me to stop
« Reply #67 on: July 03, 2012, 01:31:57 pm »
thanks everyone!!  i am doing ok.. have weight loss, depression mild, disc herniated, hcv, the works.  I am hoping to get approved on the 2nd step. first appleal.  19% here.  i am hoping my first medical they obtained did not show decline in cd4.   and cbc....  now  i have coppies of labs at all 3 doctors
08/04 diag 490 cd4 vl 50,000
10/25/05 436 50,513 hvb 1.1 billion
12/13/05 truvada sustiva
02/16/06 742 und, hpb 63,000
04/27/06 740 und hpb 60,000
01/05/07 458 und hvb und
03/08   470 undetectable still on atripla. Non smoking (chantex)
08/08 cd4 550 undetectable hiv, Hep B UND. Atripla
06/09  cd4 444, vl undetectable testo 130
09/09/09 CD4 687 46% UND  Testo 213 started androgel
10/12/09 cd4 682 46% und testo 597
01/12/10 cd4 842 48% und testo 434
041010 cd4 693  53% testo 492
100410 cd4 568 48% testo 523
012711 cd4 523 hcv 56 testo 596
083011 cd4 280 Hcv/HIV und
042912 cd4 158 hcv /hiv und, was on hep c for 11 months. do have ssdi filed and getting LTD
061912 cd4 151, bactrum, hep c and hiv und
071712 cd4 287 52% HIV HCV und
112012 cd4 520

Offline ThomCollins

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Re: Work or don't work? BF never wants me to stop
« Reply #68 on: August 04, 2012, 09:55:20 pm »
Get on disability while you still can.  It was the smartest thing both my partner and I ever did.  We both happened to meet the requirements by getting two OI's and under two hundred t cells back in 2000.  Sadly after many years of fighting like a REAL HIV/AIDS warrior my partner just passed last month from HEP C, thanks allot doc.
Love is a reciprocal torture
Marcel Proust
Don't Die
Thom

Offline LiveWithIt

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  • Posts: 535
Re: Work or don't work? BF never wants me to stop
« Reply #69 on: August 05, 2012, 01:09:32 pm »
thanks everyone!!  i am doing ok.. have weight loss, depression mild, disc herniated, hcv, the works.  I am hoping to get approved on the 2nd step. first appleal.  19% here.  i am hoping my first medical they obtained did not show decline in cd4.   and cbc....  now  i have coppies of labs at all 3 doctors

Glad you are better.  I have a herniated disk too.  L4 to L5.  At it's worst I was bed ridden and on Vicodins.  The doctor thought I might need surgery, but it was best to wait.  Could barely make it to the bathroom or kitchen.  Had to eat cereal and Chex mix and cookies for almost one week because I was in too much pain to even fix a sandwich and I had to eat lying down on the bed.  I even hobbled over to DMV and got a 6 month handicap placard. 

Now after a little more than 4 months and a month of physical therapy I am back to normal.  I will always have the disk herniation I just have to watch how I lift things and bend.  Now that I know what it is I won't have a sore back every 2 months like before.  I also have mild depression, but I could stand to lose some LBs.  Hope everything works out for you.
« Last Edit: August 05, 2012, 01:13:11 pm by LiveWithIt »
Pray God you can cope
I know you have a little life in you yet.
I know you have a lot of strength left.

Offline onemoretime

  • Member
  • Posts: 142
Re: Work or don't work? BF never wants me to stop
« Reply #70 on: August 05, 2012, 02:46:58 pm »
Hello everyone,

i have completed hep c treatment as of jun 7th. waiting for labs to see if the virus is cleared as of med termination at 8 weeks.  was cleared at end of treatment.  My cd4 and cbc numbers all dropped due to hep c regime.    Life is def a bit of roller coaster when living with hiv.  I had a real down time a month ago and the last few months of treatment (hepc)  depressed, weak, tired, sick.  I was in bed most of the time the last year.  i realized i needed to get up and start moving, stretching, exercising.  that helped a lot.  i feel much better mentally and physically. have appointment with case psyc MD.  I am at a ASO now.  I am in process of working thru ssdi process, my LTD company paid for a non attorney representative to assist with that.( allsup)  but i am getting my LTD money from my company policy.  I would like to get ssdi and slow down a bit.  focus on myself more.  i am doing that now with exercise and eating well.  the back and hep c and hiv and depression/anxiety combined all together are really the problem 1 by itself isn't a problem.  so i am slowing down and taking care of myself.  thank everyone for all the good advise and support!!!   i would like to work part time eventually.  On good days i just want to go back to work. on bad days i am thankfull i have LTD.
08/04 diag 490 cd4 vl 50,000
10/25/05 436 50,513 hvb 1.1 billion
12/13/05 truvada sustiva
02/16/06 742 und, hpb 63,000
04/27/06 740 und hpb 60,000
01/05/07 458 und hvb und
03/08   470 undetectable still on atripla. Non smoking (chantex)
08/08 cd4 550 undetectable hiv, Hep B UND. Atripla
06/09  cd4 444, vl undetectable testo 130
09/09/09 CD4 687 46% UND  Testo 213 started androgel
10/12/09 cd4 682 46% und testo 597
01/12/10 cd4 842 48% und testo 434
041010 cd4 693  53% testo 492
100410 cd4 568 48% testo 523
012711 cd4 523 hcv 56 testo 596
083011 cd4 280 Hcv/HIV und
042912 cd4 158 hcv /hiv und, was on hep c for 11 months. do have ssdi filed and getting LTD
061912 cd4 151, bactrum, hep c and hiv und
071712 cd4 287 52% HIV HCV und
112012 cd4 520

Offline clintonjrsyr

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Re: Work or don't work? BF never wants me to stop
« Reply #71 on: March 23, 2013, 10:07:06 pm »
If you do decide to apply for SSD even if you are turned down there are lawyers that will fight for you and I think SS has to pay for it I believe, it may depend if you can pay for it or not.  Once you are approved you should get retroactive money from when you originally applied.
There are lawyer's who'll represent you for free. Like legal aid. But no. S.S. does not have to pay for it.
Live like there is no tomorrow, love like you've never been hurt before, and dance as if no one is watching./

To live is to suffer. To survive is to find meaning in the suffering./

Just because someone doesn't love you the way that you want them to, doesn't mean that they don't love you with all that they have./

All men are alike in their promises. It's in their actions that they differ./

If you can't handle me at my worst, you don't deserve me at my best.

 


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