Question for Long Term survivors

[jennynyc7]

Hey everyone! I hope it is okay to post this question here as I am not a long term survivor but am seeking some info from some of you that are.

I have read through many forums, not just here ,about people who are on Disability and I am curious as to why that may be. Of coure I don't expect anyone to know someone else's personal situation but thought maybe someone could enlighten me. Being a person newly infected with little to no side effects, I guess I am being a little too optimistic and thinking that it will always be smooth sailing. Are people with HIV on disability becasue of side effects? Is it those who have progressed to AIDS and are ill, or is HIV/AIDS in itself a qualifying "disability" in someone that is asymptomatic? I am not looking to apply but basically wanting some feedback. So, for those of you that are LTS, are you on disability, and if so what brought you to that point?

Thanks!
J

[GSOgymrat]

I'm not on disability, although years ago my doctor told me to apply because of my AIDS diagnosis. One thing that will get you on disability quickly is a cancer diagnosis. I've read 30-40% of people with HIV will develop a malignancy in their lifetime. My partner has had two different types of cancer so far.

[Miss Philicia]

Jenny, you do realize that a "long term survivor" implies that they lived through the less effective treatments during the late 80's/early 90's and have many residual problems from this situation, don't you?

Personally had to go through THIRTEEN years of ineffective treatment, meaning my viral load did not become undetectable that entire time.  It took new HIV medications like Fuzeon to get me undetectable, and that necessitated injecting myself twice each day with that med.

Previous to that I mostly went on disability 7 years ago because of recurring wasting issues, and I'd assume that was caused by my HIV infection going wild in my GI tract, as well overly severe diarrhea issues that even 10 capsules of prescription-strength immodium could not effectively control .  The thing with wasting is it's often difficult to zero in on why exactly it's happening, but with me my first time was in '00 and then I regained most of my weight back only to lose it all even more severe 2 years later.

It also helped that during that entire time I was going to the doctor EVERY month -- yes, once a month for over a decade.  And once I had wasting issues I was going TWICE each month, as I had to get steroid injections.  Part of qualifying for disability is a very good paper trail, which means everything MUST be communicated with your doctor and recorded in his notations.  This is very important, and anyone even considering applying should also begin to record things at home in a diary if you have trouble communicating with your doctor -- this will help you during your actual doctor's visits.

Otherwise my biggest side effects are neuropathy and lipo, but like I state at the beginning these are residual effects from medications I was on in the 90's, not due to anything I'm currently taking.  My current regimen, consisting entirely of the newest HIV meds, is fairly free of any side effects.

As far as you last question about disability qualifications, basically your doctor must validate that you have certain things from a list of OI's -- or at least that's how it was when I did it, but that was obviously many years ago.  HIV infection is NOT, per se, make one disabled - no.

Read this for more information:

http://pozlife.wordpress.com/2006/09/11/hivdisability-and-you/

ps: I also had to file for bankruptcy at the same time I was filing for disability.  This is all NOT a fun route to go on, and should not be a decision anyone wishes for or takes lightly.

[Miss Philicia]

btw, as regards that link - is there no information similar to this on poz.com or aidsmeds.com ?  If not there should be.

[Bucko]

I'm not on disability either: my application has been turned down twice. Either I'm better off than I sometimes feel or else I need a good power-lesbian attorney  

The virus effects everyone differently. Some folks get really sick really fast, and although they may recover, are never quite the same again. For others, like myself, it's a gradual accumulation of issues, which in and of themselves are no big deal. But in their totality can be mighty oppressive, especially after 25+ years.

There are strong incentives for some people to go on Disability, too. People who live with HIV/AIDS and who have adequate health insurance are extraordinarily lucky. It's those who still work but, for whatever reason, no longer have insurance who get screwed. There are earning caps for eligibility for Ryan White and ADAP funds. Some are as low as under $18,000, the average is about $30,000. Earn more than that and you can be kicked out of the system! But trying to live on what's allowed is ruinous to one's career and financial stability. It usually results in bankruptcy: it did for me.

I have many friends who have gotten on Disability. Life's no cakewalk for most of them, but the medical care they receive with Medicare doctors is vastly superior to the ad-hoc clinic structure available down here in South Florida, and they don't have to worry about whether or not their drug is on the formulary or if the prescription was written "off-label" (for uses not intended by the manufacturer).

But,and this has become a nasty bone of contention in the past, there are no financial incentives to living on Disability. It's a life of privation, and anyone who thinks otherwise needs to put down the Kool-Aid. There's nothing glamorous about surviving on food pantries and bus passes.

[jennynyc7]

Thanks Philly, yes, I did figure that the old meds had a great deal to do with it, which makes perfect sense. I appreciate all of the useful information. Yeah, I have already filed for bankruptcy and I thank the good ole terrorists of 9/11 for that one. I think I mentioned before on here that I am a survivor of 9/11. Yesterday was interesting, as it always is. Thanks again!

[Miss Philicia]

Is it safe to assume that you live in NYC still from your screen name?  If you have not already done so, I would advise going to GMHC (it's not just for gay men, you know) and registering as a "client" etc. and sitting down with a case manager, etc.  There are many other services there, and in fact their legal department would have handled your bankruptcy filing for you at little cost other than the filing fee, but that's water under the bridge. (I lived in NYC for 15 years, up until I moved to Philadelphia 3 years ago).

Also, if you need a place with excellent "group support" type sessions I highly recommend checking out this place:

http://www.friendsindeed.org

Start with attending one of their "open" The Big Group sessions to see if you like the environment.  I always found it a very welcoming place, with a diverse group of attendees.  It's also run by a woman.

[jennynyc7]

Nah, don't live there anymore. I was a chicken and fled after 9/11. Couldn't stand the 4 hour roundtrip commute to work that was required when my job was displaced to bum $%& New Jersey, besides I missed my momma and sister . Thanks for the info anyhow.

[Lis]

you get SSDI when your so sick you cant work any more.. I lived almost 20 years before I crashed... It sucks... to not have a purpose ... Im lucky to have a family that needs me.. If i didnt ..I dont know!!

[randym431]

I've always wondered how SSDI worked. Or how one qualifies.
In 2005 I was technically aids and also had one small KS cancer spot
on the leg. I qualified then, no doubt.
Since on meds, my tcell count is in the lower range of "normal", and
the KS spot turned brown, then faded away.
Does that mean I no longer qualify? I'm have no clue.

But to even apply for SSDI, you can not be working, from what I
was told. Even if your tcells are 5 and you have 15 OI's, if you still
are working, they will turn you down. Thats my take on it...?
I guess I should have went on leave and applied for SSDI back in 2005,
but wasn’t up to speed on hiv issues back then, or SSDI.
The reason I often feel I should have applied back then is, for me, the
daily grind of working and meds becomes something you almost need to be super human
to deal with. Working 40 hours a week is VERY hard a lot of the time. Not all of the time, but a lot of the time. Its very tricky to juggle working, daily meds, daily health issues like fatigue, and still stay one step ahead of total burnout.

Then something simple like a cold or whatever comes along, and its like getting hit
by a truck load of bricks. In the "good old days", I could just muddle thru a cold or
illness. Now, something that simple can take its toll and mess you up for a few
months until you feel able to take charge again.
What irks me to no end is that around here it seems everyone can get on some kind of paid disability. People I know that could easily work a 40 hour week, but they have
discovered how to use the system. And get SSDI, and are more active then ever.
Then people like maybe you and me are turned down, the ones that are likely to
really need it.
I'd just be happy for some type of partial "assistance" so I could only work a 20 or 30
hour week with short days. That would help health wise quite a bit.

[BT65]

I have been on disability since 1994 due to having severe wasting and 4 t-cells.  I had issues throughout the years following (being in a coma for a month and having to mentally recover from that, which takes a long time) etc. 

Randy, you seem to envy, yet loathe people on disability.  Let me tell you, it's not a skippy life.  Truthfully, I live on $783 a month.  And everything comes out of that, save the $10/food stamps a month I get.  Try to have a life of luxury on that.

Bucko is, as usual, right on about food banks.  I go to at least one a month.  And sometimes the food they give (I'm not trying to sound chided) is not fit for a dog to eat.  I do have my own car, but it is parked at the moment because I can't afford to drive it (it's an 8 cylinder).  Luckily I have a very good friend who's letting me borrow one of her cars, which is a 4 cylinder.  All I have to do is pay the insurance on it. 

Medicare is a good insurance, I do admit.  I have better medical care than a lot of people do. However, it won't cover the bottom denture I need (I've been without any teeth on the bottom for almost 20 years) nor will it cover the pair of glasses I need to see things at a distance clearly.  Medicaid will cover the glasses, but only after I dole out $130 for medical bills and show the caseworker my receipts (that's every month or they don't cover squat).

Anyone who thinks life on disability is a cake walk is severely disillusioned. 

[AlanBama]

Anyone who thinks life on disability is a cake walk is severely disillusioned. 

Amen, honey!  Testify.

[PRMike]

HI JennyNyC7,  well I'm on SSI since I had gotten sick and my T-cells had dropped under 200 that was in California,,, I feel pretty good and I wish I could go back to work but if I do they will take my SSI away again and if I lose or get sick again it will be pure Hell to get bacl on SSI,,, the last time I went back to work I worked for a year and then due to the Stress and Drug use I was doing I lost my job and it took me 2 years and I also had to get sick in order to get my SSI,, so that's why I wont even try to get a job, now here in Florida I only get $637.oo a month and here they do not really have much help for people with Hiv/Aids so it's really hard to get your own place and survive, thank GOD my sister let's me stay at her place, I do pay her $300.oo a month for sleeping on her Sofa..ok I hope I answered your question,, I know that in some states it is different... so long for now always PRMike

[leatherman]

Anyone who thinks life on disability is a cake walk is severely disillusioned. 

Amen, sister, amen! I don't think that can be repeated enough.

I first got onto ssD when I was lying in a hospital with PCP. Thankfully, by that time, many other people (including my first [deceased] partner) had fought the system and forced it to make guidelines to determine the HIV eligibility requirements for disability. While I had to carry him to the car for a 100 mile round-trip to Cleveland to argue his case in court three times over 2 yrs., my application three years later was approved in 3 months. To this day it still rankles me that his first monthly check arrived the day before he passed away. He was able to sign it, and I deposited it to cover our rent that month. However because he "only" lived 25 days that months (instead of 27), the government removed the month from our account, without any prior notificaton, the day after he died.

After the newer meds helped me get to feeling better, I worked part time for a few years. Because I made too much money some of those months, my monthly check has been cut by a third (to only $500 a month) for three yrs to repay that "overpayment". (The sad thing is only difference in my life during those working years, besides have a good purpose and reason to wake up each day, was that I had cable TV) It won't be until next April that my check returns to the full amount. That's definitely made for a few tough years recently.

One last thought. I would caution anyone thinking about disability to consider the long-term effect. It may seem like it would be nice to NOT be working; but I can think of two problems with that. One, having a job can give you a sense of purpose, something to accomplish. It can be tough trying to fill your days when you're not so sick, and without a job. Secondly, going onto disability puts you on a fixed income - and that can be pretty crappy after 10 yrs. or more. Right now, it's hard enough for me to survive at 46, dealing with med side effects, and only receiving $500 a month. Some days I really wonder how I'm going to manage things when the meds keep me alive to 65 and I'm still on this low fixed income. I really understand now those stories about the elderly on SSI having to eat dog food to survive.

[jennynyc7]

Thans everyone for replying, it was very useful information.