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Author Topic: for those of you on disability  (Read 22075 times)

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Offline pozhealthy

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for those of you on disability
« on: January 06, 2009, 12:11:24 pm »
I notice a lot of you on disability have way better lab #'s than me and you post them on here.  does it ever worry you that you may get noticed  by someone and be declared no longer disabled? just wondering.  seems like now you have to be near death with opportunistic infections to be declared disabled.

Offline AlanBama

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Re: for those of you on disability
« Reply #1 on: January 06, 2009, 02:26:55 pm »
It is a bit of a worry, but not tremendously so.   They are WAY more concerned about the money side of it, not the reason for the disability.  For those like me who continue to work part-time, we are scrupulously monitored (earnings) to make certain we remain under the allowable limits for each month.

I have been reviewed twice since 2000, once in 2004 and again last year.   Never once, since 1995, have they ever questioned my health in any way.    And my numbers look pretty good right now.   To my knowledge, they have not requested any medical records.

I found this post a little irritating, and it kind of rubbed me the wrong way, but perhaps it was just the way I interpreted it, and not the way you intended it.   Hopefully that is the case.
"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 bear60

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Re: for those of you on disability
« Reply #2 on: January 06, 2009, 02:48:19 pm »
We all know that having "good numbers" does not equal "good health".  Remaining on disability is almost always a doctor - patient decision,  as well as a bureaucratic one.  If you feel well enough to go back to work, that should be up to you and your doctor. 
Simply having good numbers does not mean you can work at a 9 to 5 job. My partner has pretty good numbers now but he  suffers from all of the problems associated with being a long time survivor:
he has serious problems with lipodystrophy ( he has no body fat ( read butt) and cant sit on hard chairs)
he has fatigue issues
he has bowl movement problems
he has serious PN
he needs a nap each day for 2 hours to maintain his energy level so that he can stay awake in the evening
he has strict dietary requirements ( no fast food lunches for him) he'd have to pack his lunch to take to work
His doctor has allowed him to stay on disability. But really, he has no choice.
Poz Bear Type in Philadelphia

Offline denb45

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Re: for those of you on disability
« Reply #3 on: January 06, 2009, 02:59:11 pm »
I notice a lot of you on disability have way better lab #'s than me and you post them on here.  does it ever worry you that you may get noticed  by someone and be declared no longer disabled? just wondering.  seems like now you have to be near death with opportunistic infections to be declared disabled.


My ID Doctor told me that I should not worry about that, Yes I have good numbers, but I still have Full=Blown-Aids, and a host of other problems associated with being a long time survivor, I still have:
lipodystrophy,bowl movement problems,PN, and I also suffer form Post-Traumatic Stress Disorder, that I take medication for, and according to my ID Doctor, and all of the other ID Doctors I had thur the years snice 1998, all say I'm still disabled, I have toyed with the Idea of going back to work for the last few yrs. but , none of my ID Doctors will recommend it..........
« Last Edit: January 06, 2009, 03:01:37 pm by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline RapidRod

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Re: for those of you on disability
« Reply #4 on: January 06, 2009, 03:12:35 pm »
No it does not concern me at all. Let me tell you if I could work a full time job, I would. You barely survive on disability and there is no money for a savings account let alone any other bills that might pop up.

Offline denb45

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Re: for those of you on disability
« Reply #5 on: January 06, 2009, 03:16:48 pm »
No it does not concern me at all. Let me tell you if I could work a full time job, I would. You barely survive on disability and there is no money for a savings account let alone any other bills that might pop up.

AMEN! to that, I'd love my 45K a yr job back, rather then being on disability, no matter how stressful it was
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline RapidRod

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Re: for those of you on disability
« Reply #6 on: January 06, 2009, 03:23:41 pm »
pozhealthy, just looked at your posting history and not one time have you ever stated what your numbers actually are, nor have you posted any of your medical history except diarrhea, which I'm sure is a burden for you. 

Offline YaKaMein

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Re: for those of you on disability
« Reply #7 on: January 06, 2009, 05:00:59 pm »
Yes, some of US are on SSDI & Yes, some of THEM have better numbers. [than mine ... see my past post about T-cell envy].

Though it was suggested early on for me to apply, I wrestled with the idea for 18 months before deciding to apply. It was not an easy decision or process: who wants the stress of waiting for a decision of a case, possibly fighting with appeals if denied, fantasies about working again even through extreme fatigue, chronic diarrhea, uncertain health while recuperating from OI's?? How silly.

Hindsight: I am glad I applied and am grateful I was seamlessly approved [also see past posts]. Many have a difficult experience with SSDI. However, I also considered that I contributed to the system and met the clinical criteria. So what did I have to lose? Many die before applying or even during the denial/appeals process.

We all know first hand the fantastic rewards of dealing with a chronic illness [HIV notwithstanding]. Ha!
Disability affords me a minute financial opportunity [not much] to retool my life and focus on getting on with living. I'm able to focus on dealing with my rape, managing my health better, and chart out a future without some stress about $$ and now insurance issues.

Noticed by whom? Yeah, it crosses my mind ... but ... worry ... no way. I know that I face a medical review at any time. The same entity that approved me could determined I'm no longer disabled. That's honestly out of my hands. [Hint, it doesn't hurt if I bring up new health concerns and remind my doctors to document those and my chronic complaints AT EVERY VISIT]

Personally, I don't desire to remain on SSDI. When I am really able, if ever, to work again full time [was self-employed], then I'll work toward that or some new career. But in the meantime, it's less of a struggle for me even if I'm no where near death. -YaKa
09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline BT65

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Re: for those of you on disability
« Reply #8 on: January 06, 2009, 06:59:06 pm »
I found this post a little irritating, and it kind of rubbed me the wrong way, but perhaps it was just the way I interpreted it, and not the way you intended it.   Hopefully that is the case.

I feel the same way.  I'm really unsure of the op's intent.  You think because some of us have better numbers than you do (speaking to op) that we should be kicked off disability and you should be on it (disability)?  There's more to this disease than just numbers.
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Offline pozhealthy

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Re: for those of you on disability
« Reply #9 on: January 06, 2009, 08:44:44 pm »
wow....lol. its amazing how vitriolic some of the replies are to my post.  man i will have to start peppering my posts with smiley faces and hugs and kisses.  sheesh!  i did not mean or intend anything negative in this post at all, sorry if thats the way some of you interpreted it.  if you have read my previous posts you will understand some of my dilema. one person suggested i go on disability and i am wondering how---from what I have had several docs tell me is that i cannot because my #'s are not horrible yet and i do not have an opportunistic infection.  I suffer from many many side effects from being poz since 1991 and take lots of things to help me get through it.   i just don;t get how some people with lab values better than mine equate to "full blown aids"---NO HARM INTENDED---i am just trying to understand what the definition of disability is. Does it vary from state to state?
My original post was because I was going to a now defunct support group and the one guy was  going to have to go back to work because his lab values were great since he was on meds.
Believe me i do not want to have to go on disability but I am strongly considering it since I will never have enough $$$ to pay back my student loan debt and I cannot work 50-60 hours a week much longer.
Peace and love and hugs and kisses to all. Chill out when you read this and think before you react to strongly.   xxxxx oooooo xxxxxx ooooooo   

Offline pozhealthy

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Re: for those of you on disability
« Reply #10 on: January 06, 2009, 08:48:31 pm »
oh yeah,
BT---what is does "op" mean? just wondering.
hugs and kisses and lots of smiley faces  :) :) :) :) :) :) :) :) :) :) :) :) :) :) ;D ;D ;D ;D ;D ;D ;D :) :) :) :) :) :) :) :)

Offline pozhealthy

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Re: for those of you on disability
« Reply #11 on: January 06, 2009, 08:52:32 pm »
note to rapid rod
I did not realize that full disclosure of my medical records and all the things i have and continue to suffer with as a result of being hiv poz since 1991 were required to post thoughts and comments on here. Peace and good health to you.  xxx ooooo

Offline RapidRod

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Re: for those of you on disability
« Reply #12 on: January 06, 2009, 08:57:44 pm »
You don't have to tell us a damn thing about yourself and as far as those of us on disability, if we are concerned about losing it, is of no concern of yours.

Offline pozhealthy

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Re: for those of you on disability
« Reply #13 on: January 06, 2009, 09:14:42 pm »
i think somebody needs a nap........or a hug.   Peace to you.

Offline pozhealthy

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Re: for those of you on disability
« Reply #14 on: January 06, 2009, 09:19:11 pm »
Yaka---thank you for the reply and the excellent advice and your sense of humor---its much appreciated. 

Offline pozhealthy

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Re: for those of you on disability
« Reply #15 on: January 06, 2009, 09:43:59 pm »
to the person who sent me a message that i "stuck my nose in where it did not belong" all i have to say is "wow!"

Offline pozhealthy

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Re: for those of you on disability
« Reply #16 on: January 06, 2009, 09:48:36 pm »
I feel the same way.  I'm really unsure of the op's intent.  You think because some of us have better numbers than you do (speaking to op) that we should be kicked off disability and you should be on it (disability)?  There's more to this disease than just numbers.


did i even mention ANY of these things???? how do you make such a giant leap? wow.

Offline pozhealthy

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Re: for those of you on disability
« Reply #17 on: January 06, 2009, 09:56:51 pm »
i just discovered a wonderful button on here......IGNORE........feel free to use it for my posts as i am using on few of the people who always respond so negatively towards my posts on here and send me nasty personal messages.

Offline aztecan

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Re: for those of you on disability
« Reply #18 on: January 06, 2009, 10:50:21 pm »
Hey Pozhealthy,

I read you are considering applying for SSDI but are concerned you won't qualify because your numbers are good and you've had no OIs.

You could be right, if you rely only on HIV-AIDS.

There are other reasons to apply for disability. One example might be serious peripheral neuropathy that prevents your standing or walking much.

I know of a person who is on disability because of this whose numbers are still so good he isn't on ARVs.

Joel provided a list of his partner's difficulties that would prevent him from holding down a 9-5 job. A combination of those problems also might qualify a person for disability.

But, keep in mind there are no guarantees. What works for one person fails for another.

I am sometimes amazed at some of the cases who have been denied disability.

Are you enrolled in an ASO where you live? If so, your case manager would probably a good resource because he or she will better understand your situation.

Hope this helps.

HUGS,

Mark

"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline pozhealthy

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Re: for those of you on disability
« Reply #19 on: January 06, 2009, 11:06:57 pm »
yes i have been to 3 different ASO and got no help
and contacted the AIDs law project,lawyers and every other organization i could think of even the Bill and Melinda Gates foundation who i heard back from telling me that they cannot help individuals.  I do have an appointment next week with my state senator to see if there is something that can be done. Nothing seems to work. So i am considerein SSDI. I have chronic diarheea,PN,yeast infections in my mouth, lipo in my face and butt and arms and legs, chronic fatigue, depression, and sleep apnea to mention a few of the things i am dealing with, Does not matter, they say PAY.

Offline Ann

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Re: for those of you on disability
« Reply #20 on: January 07, 2009, 06:21:10 am »
PH,

When you see the term "op" or "OP" in a thread, it means the original poster - the one who started the thread.

If you are getting nasty PMs, PLEASE use the report button found at the bottom of the PM. We do NOT allow abuse via PM and we take this very seriously. Please read this post in the Welcome Thread:

http://forums.poz.com/index.php?topic=277.msg46637#msg46637

We cannot put a stop to such abuse unless we know it's going on.

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Offline AndyArrow

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Re: for those of you on disability
« Reply #21 on: January 07, 2009, 10:31:21 pm »
I'm on disability, although a different federal program from SSDI since I worked for a quasi-government agency, and post certain numbers from time to time and I don't worry about who finds out.

In your original post you said "now" it seems like you have to be near death.  Well, when I applied I was 6'3 (still am) and 79lbs (a whopping 185lbs now) with a feeding tube many OIs, so I was pretty darn close.  I'm a thousand times better now ... but I still can't work a regular job do to lots of other problems besides being HIV+.  So just because my numbers are better doesn't mean I'm my old self again. 

Later on you state many of the problems you have, for which I'm truely sorry you have these health problems.  But then you say you are considering SSDI.   Well, if you haven't applied what makes you assume you will be turned down because of just your numbers.

Then you ended you last post with "Does not matter, they say PAY."  Being on disability doesn't make your bills go away.  In fact, I just recently got a bill from a doctors office for $908.00 that Medicaid didn't pay.

I hope you realize that numbers aren't the only factor in deciding whether someone quailifies for disability and I wish you luck if you do need to go on SSDI.

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline pozhealthy

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Re: for those of you on disability
« Reply #22 on: January 08, 2009, 12:27:33 am »
i realize that being on disability does not make the bills go away---i was referring to the fact that I owe $100k in student loans after being essentially forced to leave dental school my sophomore semester after testing hiv poz back in 1991.  I pay $700 a month towards this debt that i will never ever be able to pay off. I cannot afford my copays for my meds and have been off them for over 2 years now and my labs are showing the results of being off meds.  Does not matter to the student loan people---they say pay. 

Offline pozhealthy

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Re: for those of you on disability
« Reply #23 on: January 08, 2009, 12:41:58 am »
To Ann the moderator--i discovered the ignore button as well as the report to moderator area and did report some things. Its amazing how hotheaded some of the posts have been-I have learned to laugh and not get so upset because it the same ones over and over.
I want to thank all the kind post with wonderful advice.

Offline pozhealthy

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Re: for those of you on disability
« Reply #24 on: January 08, 2009, 12:46:55 am »
thanks for good advice.Stay healthy and have a wonderful 2009 and beyond

Offline Andy Velez

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Re: for those of you on disability
« Reply #25 on: January 08, 2009, 08:30:19 am »
i realize that being on disability does not make the bills go away---i was referring to the fact that I owe $100k in student loans after being essentially forced to leave dental school my sophomore semester after testing hiv poz back in 1991.  I pay $700 a month towards this debt that i will never ever be able to pay off. I cannot afford my copays for my meds and have been off them for over 2 years now and my labs are showing the results of being off meds.  Does not matter to the student loan people---they say pay. 

You may very well have had conversation about this before and investigated the matter legally, but if you can prove you were forced out of dental school because of your HIV status, there must be legal recourse for that. Obviously continuing to pay a school debt for an education you're not receiving doesn't make sense in any way.

So I'm wondering about some way to correct the situation.
Andy Velez

Offline allanq

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Re: for those of you on disability
« Reply #26 on: January 08, 2009, 02:36:37 pm »
I read pozhealthy's post in the context that some LTD insurers suddenly cut off benefits, claiming that the recipients are no longer disabled. I have a friend who is currently taking legal action against his LTD insurer for terminating his benefits after 13 years. I know that at least one forum member had this happen to him. (Fortunately, after much financial and emotional grief, his benefits were eventually reinstated.) During these bad times for the economy, I fear that this strategy for insurers to cut costs may become more common.

As far as I can tell, the discontinuation of benefits does not seem to be as much a problem with Social Security benefits as it is with private insurers.

Allan

Offline franfrog

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Re: for those of you on disability
« Reply #27 on: January 08, 2009, 02:43:44 pm »
Well I am not sure how to look at this post but either way, I will give you my feeling on it.
I have had a good success on my medication.  Upon my first being diagnosed I had a cd4 of 52 and vl to high to count.  I spent a month in the hospital with PCP.  The day after I was realeased from the hospital I had to have a follow up at the clinic.  I then found that my cd4 had jumped to 299 and vl of 9000.  Being that it was a month on treatment I have to say that was great! 
Since then my numbers have climbed to 800 and a vl undetectable.  As for disability, I have been on since a year after my diagnosis and do not fear that it will get taken away no matter how my numbers are. 
I do not have a whole list of effects like Joels partner but I do have depression, fatigue and my doctors know that I can not hold down a 9-5 job. 
7/05 diagnosis cd4- 52 vl -?
08/05 cd4-299 vl-1900
10/05 cd4-249 vl-349
12/05 cd4-349 vl-52
03/06 cd4-454 vl-<50
06/06 cd4-508 vl-<50

Offline denb45

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Re: for those of you on disability
« Reply #28 on: January 08, 2009, 03:31:15 pm »
You may very well have had conversation about this before and investigated the matter legally, but if you can prove you were forced out of dental school because of your HIV status, there must be legal recourse for that. Obviously continuing to pay a school debt for an education you're not receiving doesn't make sense in any way.

So I'm wondering about some way to correct the situation.

Andy, I couldn't agree with you more, but, I did talk to the OP, and he states, this to be a fact, and form what I do know about his current situation, it really dosen't matter if  he quit his school, was forced out, are just didn't go back and fight this back in 1991, never the less, he still owes on his student loans..I'm not sure, if he use the loan funds for himself, or used them to re-train in another field, he hasn't said other-wise, I'm sure he'll see this ,and reply, as a lot of this story makes no sense , he seems to be leaving a lot of info out of this story, as it is now 2009, 1991 was almost 18 yrs. ago, and that is huge time Gap to me................dunno?
« Last Edit: January 08, 2009, 10:08:49 pm by denb45 »
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Offline kajnjewel

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Re: for those of you on disability
« Reply #29 on: January 08, 2009, 08:56:58 pm »
I have been on SSD since 1995 - not because of HIV but because of mental issues.  I did try to get on SSD back then for HIV/AIDS but was told my numbers were too good (t's were 225, VL 30,000 - go figure).  Going from making $1,900 a month to only $489 was definitely a shock and adjustment.

After I got started on the new protease inhibitors and my numbers and strength started to improve I HAD to go back to work part-time in order to make things meet.

A word of caution to everyone.  I was originally told by my counselor and even Social Security that I could work as long as I didn't make more than the national cap (which is now $800 a month for how ever long I needed to with no limit).  Here is where the word of caution comes in.

I worked 4 years making no more than the cap and was contacted by Social Security.  I was informed that since I was working now in spite that it was only part time (still to this day can not hold down a full time job because of all of the issues everyone listed) my social security benefits were cut odd.  Not only were they cut off but I had to pay back one year of my payments because come to find out they figure if one is able to work more than three years even if it is part time that is considered as a job.

The only benefit I was able to keep is my Medicare and then I have to pay quarterly payments now to keep that going.  My employer is great and I am able to make my $800 a month, keep my medicare insurance and I am still barely making it.

So if you do return to work please know that you can really only work 3 years and keep your benefits coming in or you will have to repay.
When you were born, you cried and the world rejoiced; live your life in such a manner that when you die, the world will cry and you will rejoice!

Offline pozhealthy

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Re: for those of you on disability
« Reply #30 on: January 08, 2009, 10:46:20 pm »
what do you not understand????  i was in my second year of dental school and essentially forced out when i tested positive---things were a LOT different back then---do any of you remember Kimberly Bergalis and Dr.David Acer????? The schools were doing MANDATORY testing of all students. Do you have any idea of what 2 years of dental school costs???????? Its a 4 year program.
oh never mind ----banging head on desk.......sigh

Offline BT65

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Re: for those of you on disability
« Reply #31 on: January 08, 2009, 10:48:36 pm »
So if you do return to work please know that you can really only work 3 years and keep your benefits coming in or you will have to repay.

That's not true with everyone.  I have a friend who's been working for 4 years who's never had problems with ongoing disability payments.  And, I believe Alanbama has been working for more than 3 years and has kept his disability.  It's all up to what the doctor says when Social Security decides to review a person (at least I believe this to be true).
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Offline denb45

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Re: for those of you on disability
« Reply #32 on: January 08, 2009, 10:52:23 pm »
what do you not understand????  i was in my second year of dental school and essentially forced out when i tested positive---things were a LOT different back then---do any of you remember Kimberly Bergalis and Dr.David Acer????? The schools were doing MANDATORY testing of all students. Do you have any idea of what 2 years of dental school costs???????? Its a 4 year program.
oh never mind ----banging head on desk.......sigh

So why  almost 18 yrs. that's a lotta interest in that many yrs. what did you do for the last 18 yrs of your life
you've been paying on that loan , that long? I could have paid-off a house in that about of time.......$100 Grand is less than the price of most homes........just sayin  ??? what happened in that 18 yrs gap? care to share this info? if you don't feel comfortable posting this out in the open here in this Thread, I truly and totally understand why?  ::)
« Last Edit: January 08, 2009, 10:58:39 pm by denb45 »
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Offline pozhealthy

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Re: for those of you on disability
« Reply #33 on: January 08, 2009, 11:05:20 pm »
4 years of schooling to get my BS degree in Biology and then only 2 years of a 4 year dental school program = a lot of student loans and no career. Seriously, if i have to explain this to you.......

Offline Miss Philicia

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Re: for those of you on disability
« Reply #34 on: January 08, 2009, 11:10:39 pm »
That's not true with everyone.  I have a friend who's been working for 4 years who's never had problems with ongoing disability payments.  And, I believe Alanbama has been working for more than 3 years and has kept his disability.  It's all up to what the doctor says when Social Security decides to review a person (at least I believe this to be true).

Actually I'm quite sure that there's a board member here, whose name I now forget, who has legal qualifications and has worked on this issue.  As a technical matter SS can't cut you off on medical grounds once you've been put on, because regardless of any numerical or OI improvements the underlying infection is never cured.  Supposedly, for the few that they've attempted to kick off, it's been successfully appealed on these grounds.  It's a person that doesn't post a whole lot and IIRC lives in California.  I'm sure a search for "disability" will turn it up if anyone is really bored.

I know when I was reviewed (my first and only time) in 2005 my case worker filled out my forms, and in the place where the question is phrased about having "improved" he just checked off no.  I don't know if they even contacted my medical doctor for any records.  My case management said the most important things if reviewed are just to get the paperwork in on time and to make sure you've been seeing your doctor regularly (i.e. not going for years in between appointments which I'll assume none of us do).

Like Allanq wrote in his post a few hours ago, there's a big difference with this question between Social Security and a private long term disability policy.  I've heard of plenty that got booted off for the latter. 
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Offline denb45

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Re: for those of you on disability
« Reply #35 on: January 09, 2009, 12:10:15 am »
4 years of schooling to get my BS degree in Biology and then only 2 years of a 4 year dental school program = a lot of student loans and no career. Seriously, if i have to explain this to you.......

Hunnie  ??? you don't have to explain anything to me, I hope you get outta this mess you put your self in.....Good luck with that, by the way........
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline denb45

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Re: for those of you on disability
« Reply #36 on: January 09, 2009, 12:14:47 am »



I don't re-call ever being reviewed, and it's been at least 10 yrs. I do know this, every 3 to 4 yrs. my meds quit working and I get sick all-over-again, at least until they find a good combo of Meds, (I'm kinda over-due for Drug Failure, it's already been 3 yrs.) maybe that's why I haven't ever been reviewed by  SS Offiice, oh and, I also moved to New Mexico form California about 7 yrs. ago, that could also be the reason as well...............dunno?
« Last Edit: January 09, 2009, 12:18:00 am by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline pozhealthy

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Re: for those of you on disability
« Reply #37 on: January 09, 2009, 12:35:03 am »
its been 18 years of having wages garnished, income tax refunds being intercepted and kept and applied somewhere on my student loans but when you try to find out where you get sent into a never ending spiral of call this department that refers you to another one that refers you to yet another one.  I did try to fight back but at that time i could not find anyone who has had experience with student loan matters. So the loans went to collection agencies that tacked on a 25% collection fee to the balance and then hound and harass you to no end to get you to pay more. One of my loans went to the US Dept of Justice who just wants you to pay regardless of if you can no longer pay for your meds, Just pay or they put sanctions on your professional license which then does not allow you to work. I became a Respiratory Therapist and was able to put my loans in forbearance for a while. But when that period ran out they were back at me with a vengence. This has to stop. They took away the ability to declare bankruptcy---mainly because so many doctors and dentals that did complete school and had the ability to pay just declared bankruptcy and started off thier practices debt free. This protection was messed up and makes it hard if not impossible for those of us who truly cannot pay and now no longer have that ability to declare bankruptcy,  I did try and fight it---but try and find a lawyer that is willing to take on the Dept..of education--the government, Well, i just do not have that kind of money to pay a lawyer for the years and years of litigation that will be required to fight this.  And I do not qualify for free meds because i make to much money according to them. I work 50-60 hours a week because I have to not because I want to. i should be paying 1200-1400 per month but have worked out a temporary agreement for 700 a month, so lets see how long that will keep them off my back before they reinstate the sanctions and I am unable to work as a Resp. therapist again. I am so frustrated its really taking a toll on me mentally and physcially and emotionally.  So what can i do???   At this point I think disability is my only option.

Offline Robert

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Re: for those of you on disability
« Reply #38 on: January 09, 2009, 03:08:55 am »
Actually I'm quite sure that there's a board member here, whose name I now forget, who has legal qualifications and has worked on this issue...

philicia...I think you're thinking of Sweet Prince.

Last fall he wrote a thread about Student Loans which this thread reminds me of.

pozhealthy....good luck with SSDI.  You deserve it.

robert.  (whose also on SSDI with decent numbers but in no way could go back to work.)
..........

Offline AndyArrow

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Re: for those of you on disability
« Reply #39 on: January 09, 2009, 04:45:56 am »
i realize that being on disability does not make the bills go away---i was referring to the fact that I owe $100k in student loans after being essentially forced to leave dental school my sophomore semester after testing hiv poz back in 1991.  I pay $700 a month towards this debt that i will never ever be able to pay off. I cannot afford my copays for my meds and have been off them for over 2 years now and my labs are showing the results of being off meds.  Does not matter to the student loan people---they say pay. 

You seem to have missed the whole point of what I was saying so I'll repeat it.

Your numbers aren't the only deciding factor to determine your eligibility for government disability. 

And I'm sorry that you have these enormous student loans that haven't been repaid but it doesn't really have anything to do with whether or not you will be considered disabled.  I realize it must add to your stress levels enormously I know I worry about making a HUGE (Huge = over $900.00) Indiana Medicaid spend-down EVERY  month.  And it will probably go up because my disability check had a cost of living increase so the state will want that extra too.

I would suggest you try to make an appointment with someone at Social Security or get the necessary forms filled out to get started applying for SSDI.  I wouldn't worry about being turned down before you've even applied. 

If the government really wants to find out my numbers they don't have to go looking around these forums, so posting them here is of no concern to me.  As my therapist likes to remind me there is no point worrying about something you can't change or have no control over.  (I'm working on it)

Good luck meeting your Senator and good luck if you apply for government disability.

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline BT65

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Re: for those of you on disability
« Reply #40 on: January 09, 2009, 10:49:27 am »
Pozhealthy,

I remember you posting about this situation before.  I'm sure it must be extremely stressful to try to deal with having such a large debt.  My brother has two master's degrees and has over $100,000 in student loans, which I can't imagine having to start off a career.  But, whatever, I also understand people are pretty much in control of how much they take out in student loans, and most people live off of them.  Which is understandable.

I hope you have success in trying to get disaiblity.  At least it would take care of your loans.  That is your goal, I'm guessing, to get your loans wiped out?
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Offline Miss Philicia

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Re: for those of you on disability
« Reply #41 on: January 09, 2009, 11:13:16 am »
philicia...I think you're thinking of Sweet Prince.

Thanks :)
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Offline denb45

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Re: for those of you on disability
« Reply #42 on: January 09, 2009, 11:38:59 am »

 At this point I think disability is my only option.

Good luck with that process, I'd get started on that soon, If I were you, also , your student loans will be forgiven, if your declared disabled, but if you get better and go back to work your loans will re-active-all-over again, so, that means you won't EVER be able to work again..........just sayin   ::) and no, I've talk to a lawyer about 10 yrs ago, and I was told, that SSDI cannot be garnish, as it isn't considered earned taxable income, unless this attorney was lying to me......but I don't think he was, as I was going thur Chapter 7 bankruptcy, back in 2000, so, just something for you to ponder here.........
« Last Edit: January 09, 2009, 11:43:20 am by denb45 »
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Offline pozhealthy

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Re: for those of you on disability
« Reply #43 on: January 13, 2009, 01:14:44 am »
my goal is to have my loans forgiven or at least have them take off all the collection fees that were added. I paid for my medications when I was taking them instead of my student loans.. They were garnishing 25-15 % of my paycheck anyway so they were getting something, And taking my income tax returns.
And yes, BT we do know how much we are taking out when we get student loans and you use a very small portion of this money to live on. But no ones expects to get sick with a disease that back in the early 1980's and 90's came with words from the doctor that told you that you pretty much only had a couple of years to live.  When I was in dental school they started mandatory testing of all the students. We would have had to tell our instructors and all the patients that we were practicing on. They had a special HIV room for us to practice in if they decided they were going to let us stay or not. We were told it would be very difficult to get insurance, difficult to find a dentist who would hire us since we were told this is something we would have to disclose and no one was willing to hire some of the students that were getting ready to graduate and had tested poz. Read up about Dr.David Acer and Kimberly Bergalis and you will see the frantic atmosphere we were dealing with, It was akin to a witch hunt. I believe the ACLU stepped in a few years later after i was forced out and you no longer have to disclose this fact about yourself. But my credit rating was ruined and I could not get student loans and thus not able to go back and finish the program which had all been rearranged so that it would take me a total of 6 years to get through and you can only borrow 4 years of graduate level student loan money. So, I owe over 100,000 on my loans, My credit rating still sucks..Its difficult to buy a car or find a place to live when they run my credit check. I will never make enough to pay this back and look forward to a life of poverty. I have weeded out all my "excess spending" which was the gym membership I had, Every thing else is an essential. Food,medications, co-pays for office visits, electric bill,gas for the car, car insurance,car repairs, tires, oil.toilet paper, soap. etc. There really was no fat in my budget. So the only thing i could give up was my HIV meds. I have been to the ASO's and was told that I made to much money to get free meds. so here i am at 48 years old and will be paying at least 700 a month for the rest of my life on these loans for an education I did not get. Too late to sue anyone. Not sure what to do. Very very depressed. Trying to see the light at the end of the tunnel, but i cannot. Any suggestions?
I am thinking about disability as an option.

Offline Dachshund

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Re: for those of you on disability
« Reply #44 on: January 13, 2009, 06:50:56 am »
I think I can tell by the other thread you started you're becoming frustrated by the responses you are receiving. I know your situation is awful, but what do you want us to say? You've posted about your situation on numerous occasions in this and other forums basically getting the same advice. Obviously no one has really been in your situation, so it's difficult to give you a certainty as to what you can do.

I just don't know what advice to give you. It seems like each time someone does offer a suggestion you shoot it down as impossible. It may well be, because there are thousands of horror stories out there. I wish I knew what to tell you, or where to direct you, but I don't. I hate that you can't afford your meds, because in reality that is going to lead to a disaster from which you mightl never recover.

Hopefully someone will come along with the perfect solution. I mean that.
« Last Edit: January 13, 2009, 06:52:43 am by Dachshund »

Offline PRMike

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Re: for those of you on disability
« Reply #45 on: January 13, 2009, 09:54:04 am »
Hi when I first got my notice from the Army that I had the Aids Virus back in the 80's  and found out that I could not join it broke my heart but then it hit me that I was going to Die,, So I taught but after a while I went for my Social Security and got it pretty fast so I was getting SSA & SSI and after a few years I decided to try to go back to work and Social Security  said Oh yes you can go back to work and we will not touch your check for 9 months which was true but what they did not tell me was that after the 9 months they would also find me ABLE & AVIALABLE to go back to work and then take away my SSA & SSI now mind you I was also using Meth at the time so I was getting sick without realizing it and I lost my JOB and when I went to reapply for my SSA & SSI they said NO that I could get a JOB so now I had no income so what did I do I ended up Dealing Drugs and using more to the point that I just got so sick of it that I tried to take my life, that's when I found out that my T-Cells were at 6 and Viral Load 400,000+ I also had PCP pneumonia, In California My T-Cells had to drop under 200 in order to get SSI again so I now was able to get My SSI but I do Thank GOD and the Doctor's that saved my life and the case mannerger that got me into the Rehab program...
PRMike

Offline BT65

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Re: for those of you on disability
« Reply #46 on: January 13, 2009, 09:56:20 am »
Poz, if you are thinking about disability as an option, I wouldn't wait to apply.  You should do it as soon as possible.  This will make the decision time (whether or not you're approved) faster, so if you are approved, you can get your loans forgiven faster, and be able to afford your meds.  Dachs is right, you need your meds.  I wish I could give you an answer about how to get them (meds) now, but I really don't know.  Good luck.
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Offline pozhealthy

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Re: for those of you on disability
« Reply #47 on: January 13, 2009, 11:16:13 am »
I really and truly appreciate all the responses. Its hard to fully explain my predicament without writing a 20 page story.I have followed through on all the suggestions and it lead to dead ends. The only thing I have not explored is disability. Just seems like there should be some middle ground with my loans so i could at least afford my meds.
Have a great day everyone.
Thanks for the positive post, BT, wow! finally.  ;D ;D ;D ;D ;D ;D ;D I needed that.

Offline mudman8

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Re: for those of you on disability
« Reply #48 on: March 09, 2009, 03:44:44 pm »
I'd say work as long as you can and SAVE. but I've been on it since 95, my numbers eventually came back from 80 after Pneumosystus. I have several other things in the past recent years. I've tried 3 different jobs with lots of stress, my T cells always went down.  I need my rest and no stress.  Now my parents are thankful I don't have a career as they need my weekly help my sisters can't give.
Life is analog

Offline buca45

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Re: for those of you on disability
« Reply #49 on: March 13, 2009, 01:01:24 pm »
I have been reading this thread and have to say I truly feel for you and your predicament. I hope you do find a solution that you can live with.
I do not tell anymore information than I have to here due to an awful incident on this forum two years ago. Since I was stupid enough to have used the same screenname here as I do on a few other sites, I was stalked by an angry poster who copied many of my posts where I disclosed some personal information and posted them on sites I visited often and where I was well liked. No one on these other forums knew my status, but once it was angrily revealed by some one from here, all my friends fell away and I ended up not going to these other forums.
Long, horrible stalking story later I took a break from here and stopped posting at all of the web sites that I had friends at.  I lost many internet friends (many of whom I had met face to face and enjoyed time with them) who were either turned off by the fact I am positive or felt betrayed at me for not being upfront and telling them. I ended up realizing these people were not true friends at all, but it still hurt to have my personal posts from here plastered all over the internet. I no longer browse the net like I used to and miss the "friends" I did have on other sites.  Lesson learned....be careful not to post too much personal information here and do not, under any circumstances piss off any posters!!
Anyway, no, I would not under any circumstances post my lab numbers and I too am on disability and have been for 6 years for fear of being 'outed' as I was before. I feel I am actually taking a huge chance by posting this story but I am now at the point of saying fuck it....if someone wants to try and take me down or ruin my reputation...have at it!!
Back to your situation. If you are feeling overwhelmed with these student loans (and it seems they are causing you great distress) why don't you apply for SSDI, stop working and get your doctor to help you get a determination of disability? Then file for bankruptcy so your bills would be forgiven. I know your credit standing will be ruined, but take a personal inventory of everything you now own. Do you own your own home? Cars? What other material items do you have that you owe money on? Are you willing to put your credit standing in jeopardy in order to receive SSDI and to receive help with your doc visits and meds?
I know from experience it is a hard thing to do, but just from reading your posts it seems these school loans have such a grip on you that I am surprised that you have stayed healthy enough through this stressful dilemma to work with HIV.
Just for the record, I did not take any offense at this thread and feel it was asked with no malice intended. For those who posted such nasty responses...well you know....
Good luck to you in finding a viable solution to your immense problems. You know that only you can make a decision that will enable you to focus solely on your life and health....if you don't take care of yourself what good do all these other issues matter?
"Love and Laughter and Happiness Ever After"

 


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