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Author Topic: Living with AIDS and working for a living?  (Read 19319 times)

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Offline blbldude

  • Member
  • Posts: 15
Living with AIDS and working for a living?
« on: June 13, 2006, 11:25:30 PM »
Just wondering if there are others who are living with AIDS and have been able to continue working for a living? I was diagnosed with AIDS in 2004 and had a CD4 count of 11 and a VL of 100,000. I went on the meds and my count has since increased to 184 and I'm undetectable. I've continued to work the entire time for a company in a office job (although it has been sometimes difficult).  It seems like other people I have met with AIDS are all on disability. Are there others out there with HIV/AIDS who have been able to continue working?

Offline sdcabincrew74

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    • My Manhunt account
Re: Living with AIDS and working for a living?
« Reply #1 on: June 13, 2006, 11:36:52 PM »
I had a VL off the charts and a CD4 of 22.  I had PCP and MAC.  I took three months off to recover.  I have been and will continue to work full time until I die.  I get too bored.  I could have went on disability but I need to work.  So, I work, I am a flight attendant, travel all the time.  Fly bunches of hours every month and live life to the fullest.
The difference between an overnight and a layover is luck!

Offline joemutt

  • Member
  • Posts: 1,039
Re: Living with AIDS and working for a living?
« Reply #2 on: June 13, 2006, 11:43:07 PM »
Since being diagnosed 9 years ago, I have, because I could. Stratospheric CD4 numbers, lipid problem, depressed on and off. Have been in hospital 2 days for food poisoning once. Started my own company 4 years ago.
Sometimes I take a nap in the afternoon, I can decide freely about my time,
have to travel around a lot, work in a tropical climate, it all helps.
That said I have been through a hotel fire and the tsunami both in which I have lost clients, and then there has been SARS, avian flu and an economic bust but I made it through.
I understand for many though working is not a possible choice.

Offline david25luvit

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  • Member since March 2005
Re: Living with AIDS and working for a living?
« Reply #3 on: June 14, 2006, 01:36:51 AM »
I was working up until I contracted Steven-Johnson's Syndrome....
And I do miss the people I worked with...customers I had known
for 30 years in the business...Disability sucks!
In Memory of
Raymond David McRae III
Nov. 25, 1972- Oct. 15, 2004
I miss him terribly..........

Offline Cliff

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  • Posts: 2,645
Re: Living with AIDS and working for a living?
« Reply #4 on: June 14, 2006, 01:43:24 AM »
Just wondering if there are others who are living with AIDS and have been able to continue working for a living? I was diagnosed with AIDS in 2004 and had a CD4 count of 11 and a VL of 100,000. I went on the meds and my count has since increased to 184 and I'm undetectable. I've continued to work the entire time for a company in a office job (although it has been sometimes difficult).  It seems like other people I have met with AIDS are all on disability. Are there others out there with HIV/AIDS who have been able to continue working?
You will probably find that those living with AIDS (as opposed to HIV) are more likely to be on disability, since they are more likely to deal with health issues (OIs for example).  You're also likely to find that the longer someone has been living with the virus, especially if they were diagnosed pre-HAART, are more likely to be on disability, than those who are relatively newly diagnosed.  Again, because they are more likely to be dealing with significant health issues.

But as you can tell, there are people out there, (and lots of them), who continue to work (both those diagnosed with AIDS and those who are HIV positive but have not reached AIDS yet).  Generally, it's a burden financially to live on disability, so where people can continue to work, it's a blessing.

Welcome to the forums!

Cliff
(Who works as well.)

Offline cubbybear

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  • Joined August 2005.
Re: Living with AIDS and working for a living?
« Reply #5 on: June 14, 2006, 02:32:27 AM »
I had my stint with 35 CD4 and a few OIs.. and tried to go back to full time work and it made me even more tired.. I've had a month off, got another one to go, then thinking I'll be going back to full time work again.  Even with AIDS and OIs I couldnt get on disability in Australia, apparently I wasn't sick enough.. go figure!
There's a bear in there!
Positive since 2000
Diagnosed 17/9/2005 CD4 35 VL 293,000
Meds 23/9/2005 Sustiva/Truvada
Currently CD4 232 VL Undetectable

Offline Markmt

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  • Posts: 174
Re: Living with AIDS and working for a living?
« Reply #6 on: June 14, 2006, 03:50:23 AM »
I was unemployed when i was diagnosed with AIDS (I think I qualify for that since my CD4 was 165 but no OP's), but I never qualified for disability. Like others had said I did not even qualify if I tried. 

My ID Doc encouraged me to keep on looking for work, or be active (as he put it), and he has a point of mentioning it on every visit. In all honesty if I did have a job I don't think I would have handled it well for the first few months after starting on meds!.

mark
"Live to love and love to live."

Leo Buscaglia

Offline penguin

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  • The Penguin Whisperer
Re: Living with AIDS and working for a living?
« Reply #7 on: June 14, 2006, 04:25:23 AM »
I work part-time these days(usually about 12 hours a week),which feels a lot more manageable, and is much better for my overall health(however there are some issues with my current employer, which i may post about another time...).  I also do some voluntary stuff, which i really enjoy.

For me, I need to be doing something, for however many hours per week... otherwise I feel like HIV/AIDS (and yes, I'm a paid up member of that club) begins to dominate my identity too much.

Kate

Offline heartforyou

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  • I must be a survivor in many ways...
Re: Living with AIDS and working for a living?
« Reply #8 on: June 14, 2006, 05:09:34 AM »
I quit my flying job in 1995, after 18 years of duty, due to PCP.

But six months later I was working in the fitness world, part-time.
In 2000 my husband and I started our own Wellness Center and on many days I worked for 18 hours, 7/7.

It took it's toll however and I had to reduce my working hours significantly last year.

But as long as I can I will work as part of socialising and putting my skills to full deployment.

I can remember days though, where, due to the meds I could hardly see, mainly due to blurred vision. But I was still letting customers sign contracts.

To be honest : I am glad I work.

Hermie
Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

Offline JohnOso

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Re: Living with AIDS and working for a living?
« Reply #9 on: June 14, 2006, 05:14:24 AM »
Yep, 40 hours a week, but I refuse to do overtime since I found out about my Unwanted Companion.  Right now I'm precepting someone, so not doing (too much) hands on stuff.  The shit hits the fan again next week though.

Take care,
John

Offline J.R.E.

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  • Posts: 7,094
  • Joined Dec-2003 Living positive, since 1985.
Re: Living with AIDS and working for a living?
« Reply #10 on: June 14, 2006, 07:41:41 AM »
Hello,

I was diagnosed positive in 1985, received an aids diagnosis in August of 2003.
I still continue to work, But, in 2004 I had to take a position change because of neuropathy. Otherwise, I am still managing to work 40 hours a week, and hope to for a while. There is no way, I can do the things I used to do, so the type of job, and how physical and demanding that job is, can make a differance. I very much enjoy going to work everyday. Plus, I need my insurance !! I think that keeps me going also. Since that diagnisis back in 2003, I haven't missed more then 3 days of work, so I feel pretty good about that.



The Best-----Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline BooBoo

  • Member
  • Posts: 86
Re: Living with AIDS and working for a living?
« Reply #11 on: June 14, 2006, 08:09:09 AM »
I was diagnosed in 1992 and have always worked full time.....and most of that time I've had two jobs.  Right now I work full-time at an ASO (The Pittsburgh AIDS Task Force) and part-time for Macy's selling women's shoes.  I love both jobs and I think I would go a bit stir-crazy if I didn't work. 

Offline BrooklynGuy

  • Member
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  • Tomorrow is not a promise, it's a gift.
Re: Living with AIDS and working for a living?
« Reply #12 on: June 14, 2006, 08:16:38 AM »
I was diagnosed in June of last year (just about a year ago) after falling very, very sick.  My initial numbers were CD4 30/VL 650,000.  Went on meds immediately.  Had PCP, Thrush, and Wasting at the time.  Took a couple of months off work to get my strength back and "process" my situation.  Have been dealing with MAC caused by Immune Reconstitution Syndrome since July of last year when I went on the meds.  Pretty much everyone at work knows and has been very supportive.  I still manage to put in at least 50 hours/week with pretty much no problem.
Infected:  Probably 1995
Diagnosed: June 2005
Baseline VL: 650,000
Baseline CD4: 30

Last Dr. Visit: 12/2013
VL: Undetectable
CD4: 700
Meds: Complera

Offline GSOgymrat

  • Member
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  • HIV+ since 1993. INTJ
Re: Living with AIDS and working for a living?
« Reply #13 on: June 14, 2006, 10:03:04 AM »
I've been HIV+ for 13 years and have worked or gone to school full-time, or both, the entire time. In the past 12 years with my current job I think I have called in sick maybe 4-5 times.

Offline Moffie65

  • Member
  • Posts: 1,755
  • Living POZ since 1983
Re: Living with AIDS and working for a living?
« Reply #14 on: June 14, 2006, 10:56:40 AM »
Good Question.

Diagnosed 1983,  continued to work for Eastman Kodak for another four years.
1987 Quit, and purchased a Kenworth and started a new business driving this truck for 18 months.  Was sick three times.
1988 Sold the truck, and drove a cement mixer for a year.
1989 Moved from California, purchased a rundown 12 unit apartment building and commenced to remodel the whole thing ourselves.
1994 Had to stop work, due to PCP.  Sold the apartements.  Went to full AIDS.
1995 PCP the second time around.  Moved to a new town and purchased another fixer-upper.  Went on full SSDI.
1999 Sold home and moved to Arizona.
1999 to 2006 Worked full time for myslelf, fighting to get services to the clients here in the deserts of Arizona.  Plus started an AIDS Service Organization in 2003, and have been running it for the whole time. 

I guess this is self explanitory. 

In Love.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Dachshund

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Re: Living with AIDS and working for a living?
« Reply #15 on: June 14, 2006, 11:46:49 AM »
Yep,been working pretty much full time since my '92 diagnosis. Once I got off the pity pot and realized I was on my own there was no other option. Believe it or not the best "fit" for me the past seven years has been waiting tables. Momma would be so proud of her college educated son. In reality I make more in twenty hours than I ever did working full time. My days are free which allows my body time to adjust...plus a nap if I need it. If I need time off all I have to do is cover my shifts. Downside no health insurance and all the kids call me "Flo".

Peace,
Hal

Offline AlanBama

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  • Alabama: the 'other' 3rd World Country!
Re: Living with AIDS and working for a living?
« Reply #16 on: June 14, 2006, 12:10:09 PM »
If you are working full-time and earning a good living, my advice is to hang onto it as long as possible.   It may be difficult to work somedays, but believe me, going on SSD and not working brings on a whole new set of difficulties.
I would take the former over the latter any day.

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 hjeffs

  • Member
  • Posts: 65
Re: Living with AIDS and working for a living?
« Reply #17 on: June 14, 2006, 02:19:39 PM »
Yes a full time job, 40 to 60 hours a week. My partner and I also have 2 children. One just graduated from High school last Friday and the other will be in 5th grade next year. So....yes I have a full time job and a full time job. Both my partner and I , both positive, lead full lives.
No it is not always easy. I have been on meds for a year now and my partner just started and he is having a few issues right now but I think that will go away with time.
We are blessed to continue with what we have and provide for our family as difficult as it is at times. I'm not stopping until I drop!
Keep on moving, life is good at work.

Be well
Jeff

Offline Dennis

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  • Posts: 781
Re: Living with AIDS and working for a living?
« Reply #18 on: June 14, 2006, 07:03:14 PM »
Been positive for 15 years and worked full time since the age of 18.  Currently I work full time and attend school full time.  For me, I literally have to be dying to call in sick.  Work is my life.  Although getting up in the morning can be hard sometimes, it's work that gives me a reason to. 

Offline cflas

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Re: Living with AIDS and working for a living?
« Reply #19 on: June 14, 2006, 09:42:12 PM »
I think I would go crazy if I didn't work (even though I sometimes think I would go crazy anyway!).  Since I found out 12 years ago, I haven't not been without a job.  I'm a medical social worker and the biggest problem I have is trying to re-set boundaries.  I like to think I'm doing great things but sometimes I feel nobody gives a shit. I work because the insurance is great.  And not everyone knows at the hospital about my status although, since I had to have surgery last year, I suspect more people know about my status that I think.

What is a bother is that I don't necessarily find the job all that satisfying but I make way too much money to quit and adventure somewheres else.


Offline allopathicholistic

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Re: Living with AIDS and working for a living?
« Reply #20 on: June 14, 2006, 10:25:04 PM »
Yep, 40 hours a week, but I refuse to do overtime since I found out about my Unwanted Companion.  

Yeah overtime's a 4-letter word in my book .......whenever that word is uttered, it's wise to exercise caution i.e. suspect that office politics are involved ... okay, that's been my experience so i'm bitter. blbldude, like penguin I now work part time ..... I feel like a loser because I used to work 40 hours and now it seems my body won't let me  :(

Offline Oceanbeach

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Re: Living with AIDS and working for a living?
« Reply #21 on: June 15, 2006, 12:37:25 AM »
I continued to work after my HIV positive diagnosis in 1994.  I was promoted to VP, produced a radio talk show, and served as Chief Designer of our product line for two years after my initial diagnosis. The firm was aware of my HIV status from the beginning.  My shares in the firm were bought out with my AIDS diagnosis in 1996 while in the hospital with PCP.  The company felt that there was too much risk of having a top management person going out on a workers' compensation claim.  I was technically bought out but can consider myself fired.

I do know several people here in Sonoma County and in Los Angeles who are currently working with an AIDS diagnosis.  Most of these people are working in healthcare and in the local ASO's. 

As Chief Designer of Industrail Safety programs, I have completed a new line of product that would be in direct competition with my former employer, which I plan on release later this year.  Currently, I am working full time as a member of the Sonoma County Commission on AIDS, the Persons Living With HIV/AIDS Committee, Basic Needs Committee, Executive Committee, Funding Allocation Working Group, serving on the AIDS Nutrient Bank Board of Directors, as of tonight a Board Mermber of Project Africa and plan on developing a radio talk show on HIV treatment and care issues.  In my free time, I cover the press for all Commission on AIDS activities and have designed, written and marketed and own the site www.Commission-on-AIDS.org.  On Sundays, I do the yard work for a disabled woman because she has a very picky landlord and could lose her house if the landlord was not happy.

I work more than full-time but do not get paid for my efforts.  Have the best day
Michael   

Offline MitchMiller

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  • Posts: 464
Re: Living with AIDS and working for a living?
« Reply #22 on: June 15, 2006, 10:56:13 PM »
I work full time and plan to continue indefinitely.  I like $$$ too much.  A friend keeps telling me to stop working and live on my co.'s disability policy ... plus I have a $2K/month personal disability rider on top of that... so I would be sitting pretty sweet.  However, I doubt in this day and age, I could do that unless I was REALLY sick.. and stayed sick.  AIDS alone is not good enough to be called disabled anymore.




Offline Life

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  • Member 2005
Re: Living with AIDS and working for a living?
« Reply #23 on: June 15, 2006, 11:40:48 PM »
10 months into it.  HIV so far.   Two Jobs, 80 hours a week.  Hike, Climb, wreck jeeps and make love alot to my guy..

Offline allopathicholistic

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Re: Living with AIDS and working for a living?
« Reply #24 on: June 15, 2006, 11:46:41 PM »
Two Jobs, 80 hours a week. 

wowee, that's alot. some people say that's a "type A" personality - i say it's "type BWE" (blessed with energy!) -- nice

Offline CowboyPOZ

  • Member
  • Posts: 61
Re: Living with AIDS and working for a living?
« Reply #25 on: June 16, 2006, 01:36:07 AM »


I still work 50-60 hours a week, still save for retirement, work on the farm and we entertain friends quite a bit. I may have this virus but it doesn't have me. Live life like there is no tomorrow and have a job with great health insurance as long as you can.

Offline USNRET

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  • Posts: 19
Re: Living with AIDS and working for a living?
« Reply #26 on: June 16, 2006, 07:06:56 PM »
I retired from the military still running 3+ miles going on 15 mile hikes and went into the construction buisness work 40-60 hours per week (hard labor) and my cd4% was at 11% which is AIDS, never stopped working have not even had vacation.   Diagnosed Sept 2005 when I found out it was this low of a count, but never have been sick for years...not even a cold...hopefully this keeps up...knock on wood.  CD4 now over 18% at 405 about 6 months later.

Offline Steven

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    • A Place To Start
Re: Living with AIDS and working for a living?
« Reply #27 on: June 16, 2006, 07:45:56 PM »
I was diagnosed with AIDS back in 2002 and except for taking 3 months off after initially finding out I have continued to work full time.
I think I would die if I could no longer work as I would feel so unproductive.

Offline bobik

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Re: Living with AIDS and working for a living?
« Reply #28 on: June 17, 2006, 04:10:13 AM »
Aids diagnosis in '93. have been too sick to work for about 2 years. Now I have 2 jobs, work as a nurse for 28 hours and am a singer/singingteacher, teaching 30 students, 3 ensembles and 4 choirs, and rehearsing almost every evening.....

Coen
Coen Honig at Facebook

Offline Quarter Horse

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Re: Living with AIDS and working for a living?
« Reply #29 on: June 17, 2006, 01:18:59 PM »
Work as a nurse 10 hrs a day, 40 hrs a week full time.

Brian
In three words I can sum up everything I've learned about life: IT GOES ON.

Robert Frost

Offline Superman

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Re: Living with AIDS and working for a living?
« Reply #30 on: June 18, 2006, 11:26:48 PM »
Just what are the details of Disability anyway?  Never been on it.  Can you live reasonably well?  Does it pay the same amount as you would have made at your job or is it just minimum money like Un-Employment?

S

Offline gerry

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Re: Living with AIDS and working for a living?
« Reply #31 on: June 18, 2006, 11:51:16 PM »
Disability never pays the same amount as you would have earned from your job.  The amount varies depending on whether or not you were working, and therefore contributing to Social Security, and for how long, as well as if you have private disability insurance.  If you have both, the total may not exceed 2/3 of your income while you were working.  For those who did not have enough quarters in which they contributed to Social Security through work before becoming disabled, there is a guaranteed minimum (SSI) which is a very small amount and very difficult to live on.  However, for those who are on SSI, they automatically get Medicaid for health care coverage.  Now, for those who get greater than the SSI amount, a lot of them become disqualified from getting Medicaid for health care coverage.  Medicare does not kick in until 2 years after one is disabled.  So for that 2 year period, a lot of people fall through the cracks as far as health care coverage goes while being disabled, unless they can afford to pay for COBRA continuation coverage if they had insurance through their work before bieng disabled, or unless they qualify for some other government program that has a higher income cutoff (e.g. Ryan White) than Medicaid.
« Last Edit: June 18, 2006, 11:53:29 PM by gerry »

Offline jkinatl2

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Re: Living with AIDS and working for a living?
« Reply #32 on: June 18, 2006, 11:54:00 PM »
My disability pays a little over six hundred dollars a month.

My rent, in section eifght housing, is one twenty five.

Bills, which I struggle to maintain, are another two fifty to three hundred.

Car insurance is ninety.

So I have little over a hundred dollars a month for food, medical which is not covered under Medicaird/Medicare, gas, and fun.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Cliff

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Re: Living with AIDS and working for a living?
« Reply #33 on: June 19, 2006, 12:13:43 AM »
Just what are the details of Disability anyway?  Never been on it.  Can you live reasonably well?  Does it pay the same amount as you would have made at your job or is it just minimum money like Un-Employment?
The other problem with disability income is that it does not grow (well not by very much).  What you get is what you get (I think there is small component of the government's insurance that increases with inflation).  If you were working you could expect higher wages, through raises, promotion, job changes, etc.. You don't get that benefit under disability, so while even those who may have private disability insurance (that pays a decent amount because of their high earnings), eventually as the cost of living around you increases your standard of living decreases.

Offline Oscar

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Re: Living with AIDS and working for a living?
« Reply #34 on: June 19, 2006, 12:22:59 AM »
I have been on disability since July 2003.
« Last Edit: June 19, 2006, 12:45:35 AM by Oscar »

Offline allopathicholistic

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Re: Living with AIDS and working for a living?
« Reply #35 on: June 25, 2006, 05:31:20 PM »
bump (my boo-hoo bump, since I boo-hoo regularly about no longer being strong enough to work full-time)

Offline Eldon

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Re: Living with AIDS and working for a living?
« Reply #36 on: June 25, 2006, 09:32:21 PM »
i was diagnosed in 1990. I have always worked 40 -60 hrs. per week until Aug 2005. I went on disability March 2006. Plan to go back to work cause it's boring and I need something to do each day to keep me busy. I love to work.

Offline randym431

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Re: Living with AIDS and working for a living?
« Reply #37 on: June 25, 2006, 09:54:34 PM »
Guess it depends on what you do for work. Keeping insurance is tied to work. My last SS statement/info stated "if you became disabled today you would receive $1550 a month”. That wouldn’t be much, but if I lived simple and no longer had all the gas/car expenses I could live on that. And getting my 401k I could pay off the house and most of what I owe. So I have thought about it. Working long hours, and nights to boot, it does get very taxing and I ask if its worth it? But in reality, I'm not really sick. I don’t feel sick. I don’t look sick. So I would feel a little guilty. And to be at the mercy of the "system" for your med coverage and any doc bills that pop up, I'd worry. Technically I was aids in the beginning. My numbers no longer fall in the aids category. So I don’t even know if I could get on SSDI. No idea how that works, or how the meds would be covered till SSDI kicks in. Too many unanswered questions. But if I did get sick or could no longer deal with holding down a job, I would not feel guilty about shooting for SSDI benefits. I'm 53 and I wouldn’t mind retiring, if I could. Still so much to explore on youtube an xtube. ;)

Offline Blixer

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Re: Living with AIDS and working for a living?
« Reply #38 on: June 25, 2006, 10:24:37 PM »
Diagnosed 5 1/2 months ago.  Have had some significant side effects issues with meds but continue to work full time.  Luckily, I'm in a job where I was able to do that even with the side effects.  As the side effects lessen, I find I'm not up to doing everything I used to do, but I can still do my job quite well.  In the education system in my state you can take early retirement after 25 years of service.  This was my 18th year.  So six more years and I could take early retirement which would entitle me to keep my group insurance forever (at my expense though).  I may or may not be ready to retire at that point. I like what I do and I enjoy working.  (Does that make me another type A personality?)  My plan even before my diagnosis was to take the early retirement and then start a second "part time" career that would allow me the freedom to do some traveling or other things I wanted to do.  So that may still be my plan.  Teacher's in my state do not pay into social security, so we have no social security coverage.  I did work enough time in high school and college and part time summers to qualify for social security, but as of December 2005 I did not have enough quarters in the past 10 years to qualify for disability.  I have done some adjunct teaching work in the first half of this year that would finsih out those necessary quarters.  But hopefully that's not something I'll need to take advantage of.  I find I do get a bit more fatigued than I used to, but nothing bad enough to impare my work performance.  And I can still do a 12 to 14 hour day when duty demands it.
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline rocket

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Re: Living with AIDS and working for a living?
« Reply #39 on: June 25, 2006, 10:50:06 PM »
Good point Cliff,about inflation.The only way in the U.S to overcome the 10 trillion dollar deficit the republicans have left us with is to inflate the currency(print lots of it)its the only acceptable way.This is very scary as the price of almost everything will go up and our standard of living will worsen.Im thinking of putting my money in a Canadian account.  I was recently diagnosed and have a disability policy thru my job,so far Im lucky.

Offline megasept

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Re: Living with AIDS and working for a living?
« Reply #40 on: June 26, 2006, 05:46:45 PM »
 ::) Yes, indeed. I have been positive since 1991. Not only working but working, way too much as in 60+ hours/wk, and occasional work 7 days a week. The truth is, I have never had a permanent job that was "kick-back." There is nothing like a fat paycheck and group plan insurance to heal the sick. Seriously, I am a little tired of the not-so-sick lying around home on Disability. Notice I didn't criticize the truly ill. I have friends in the latter category. When sick, I also like to be home near my very own bathroom, and not having to face the world. But when I am better, engagement with the world does me a world of good. I plan on working another 5-10 years before retiring, if my HIV allows me. So far I've been blessed so far ::)

Offline allopathicholistic

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Re: Living with AIDS and working for a living?
« Reply #41 on: June 26, 2006, 06:27:12 PM »
Seriously, I am a little tired of the not-so-sick lying around home on Disability. Notice I didn't criticize the truly ill. I have friends in the latter category.

but some need the help in order to recupe to a "well enough" level to return to work

Offline bear60

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Re: Living with AIDS and working for a living?
« Reply #42 on: June 26, 2006, 06:42:36 PM »
What about the possibility that staying out on disability will prolong your life, make you happier and provide you with time to "do what you always wanted to do"?  Isnt it possible that just as some need to work...some dont?
Poz Bear Type in Philadelphia

Offline TampaBob

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Re: Living with AIDS and working for a living?
« Reply #43 on: June 26, 2006, 07:04:06 PM »
I have been poz for 10 years. When first diagnosed i had a tc count of 99, but my Dr. told me that after a couple months of meds, i'd be fine - i had no OI's.

I had the chance to go on disablity (my initial counselor told me i should, but i listend to my dr), but didn't. Since then, i have changed jobs, 3 times (all promotions), moved 3 times, and my health has continued to improve every year!

I think in ten years, i have missed maybe 12 doses of my meds, and started excercising, and watched my diet. I don't do drugs (never did), watched my booze intake - basically lived a balanced life.

I have taken mabye 6 sick days in the last 10 years, have always found employers with great benefits, and also made sure i took advantage of LTD, and Short-Term Disablity, Life Insurance (all guaranteed issue)...that's really made me sleep really well at night!

I just got back from my annual checkup - VL: Undetectable under 50 copies/TCell's 890. My Dr is great!

I credit my 1st meeting with my PCP for setting my life in order. He told me that HIV was VERY MUCH a disease i could manage if i followed my regimine, lived a balanced life, and didn't "give up."

I feel so bad for so many guys who put off getting tested,and then find out their body's defenses have been so ravaged that it may NEVER fully recover.

I work all year long to help raise money for our local HIV/AIDS Organization and to date have helped raise over $1/4 of a million dollars since 2000.

My partner of 10 years and I recently bought our dream home and are enjoying our lives here in Tampa!

Yes, i am fortunate, but I know i have worked very hard at being healthy, takign my meds, not using TINA/X/G, etc. HIV may end up killing me, but i choose to belive what my 1st Dr told me: "Bob, you're more likely to die in a car accident than HIV/AIDS if you just take your meds, watch your health and live a balanced life."

So far - so good!

Offline divadav3

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Re: Living with AIDS and working for a living?
« Reply #44 on: June 29, 2006, 10:44:00 PM »
Don't laugh!! after the initial shock of finding out my positive status I was actually looking forard tothe day that I could sit home and collect disability. I thought that i would finally after 25 years of working be able to take a much needed vacation and just relax. It didn't quite happen that way. i have been poz since 1997 and i am stil;l working and attending Nursing school FT. That is what happens when you have a chronic manageable disease. At least that is what the US government says. ::) ;)

Offline BB

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Re: Living with AIDS and working for a living?
« Reply #45 on: June 29, 2006, 11:20:51 PM »
I was infected November of 03, got sick (seroconversion) December of 03, was diagnosed in April of 04, and started meds in August of 04. My CD4 count was dropping quickly and was somewhere around 350 and the bug count was reaching for 200,000.

After my seroconversion my life changed and I became something of a zombie. Sick, exhausted, and diarrhea so bad I thought I was dieing. I could not speak unless I drank a swallow of water first and then only for a few words. Hydration during that time was not a problem cause I drank about three to four gallens per day.

Through all of that I still worked, but did use some sick leave on occasion. I still work today full time and will continue until retirement at age 60/62 baring any other problems.

BB
Damn the Torpedoes! Full speed ahead! Adm. D. Farragut.

Started Atripla 8/18/06 and if I eat the right food when I take my meds, I get to go on a-trip-la.

Offline Moffie65

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Re: Living with AIDS and working for a living?
« Reply #46 on: June 30, 2006, 09:40:44 AM »
............................................ Seriously, I am a little tired of the not-so-sick lying around home on Disability. Notice I didn't criticize the truly ill. I have friends in the latter category......................................................................... So far I've been blessed so far ::)........................................  

I haven't seen this statement here for about two years, and I hope it is another five years before I see it again.  Listen up my friend.  There are many of us here that would give you both of our balls if doing so would give us the strength and ability to go back to work.  Generalizations like this, stated in an "HIV/AIDS Support Forum", are not only out of place, but let the reader know that the author knows nothing about "Living With HIV". 

I would ask all of you YOUNG people to get a clue, and realize that many of the people on this forum are here because that is just about the true extent of what we are capable of doing, and when you have been living with the full effects of this very DEADLY illness for 20 years or more, then you can come back with your flippant ideas about who should be working and who shouldn't. 

I found out a very long time ago that judging anyone with this disease is not for me to do, and to that end, I try not to get too personal, EXCEPT with those like this author who is obviously not educated on the realities of living with this disease.

In Shock and Awe...................................
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline ademas

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Re: Living with AIDS and working for a living?
« Reply #47 on: June 30, 2006, 12:49:12 PM »
I was one of those who avoided testing for many years, even though I had good reason to believe I was positive.  When I did finally test, my cd4's were 79 and my ratio at 4%.  Numbers aside, I felt pretty good, and I was never sick.
I worked for another 7 years, and then the shit-hit-the-fan all at once.  Lipidystrophy, fatigue, psoriasis, arthritis, neuropathy, sinus infections...I just got bombarded with something new at every doctor appointment for about six months.  My work required 50-60 hours per week and 2 months per year of travel and tradeshows, and I just got to a point where it was no longer feasible.  My health was affecting my work, and my work was affecting my health, and both were suffering.
After nearly 20 years at a job that I loved, I went on disability in 2001, and that's where I'm at today.
Yes, I hate it.  It's boring, and it's not good for my self-esteem, and I feel very stuck. 
The irony is that it has given me the time to take better care of myself and feel better, but to what end?  If I were to return to work full-time, I would be right back where I was within a few months.  I know this, because I've twice attempted to participate in the trial work period, and it took just a couple of weeks both times to know it wasn't going to work.
I'll never say never, and I would like to return to full-time, but I just don't see it heading that direction at the moment.
I also don't appreciate the comment. "...I am a little tired of the not-so-sick lying around home on Disability."  You just don't know people's situations.  Some are able to appear "not-so-sick" a lot of the time only because they are no longer working full-time, which allows them to get adequate rest, exercise, nutrition, and simply attend to their bodies and health. 


Offline Bartro

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Re: Living with AIDS and working for a living?
« Reply #48 on: June 30, 2006, 08:30:23 PM »
Someone earlier in this thread made an attempt to criticize those they thought shouldn’t be on disability.  Please excuse my rant. 

As someone who has worked and contributed to the Social Security system for over thirty years I feel entitled to draw disability payments when I need them.  Social Security disability is an insurance program.  FICA=Federal Insurance Contributions Act.  It’s not a handout.  It is insurance.  No matter how the government has mismanaged the program is not my problem.  For someone with HIV/AIDS it is not easy to qualify for benefits.  Ask anyone who has tried to qualify.  You must truly be disabled.

If social security can spend billions on “attention deficit disorder” and other maladies to individuals who have never paid a penny into the program, they should definitely help people in our situation live modestly while ill.

I’m working now, but if the day comes when I must choose between my health and work, my health will definitely come first. 

I feel better, thanks.
« Last Edit: June 30, 2006, 10:16:01 PM by Bartro »
Rusty

Offline Dennis

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Re: Living with AIDS and working for a living?
« Reply #49 on: June 30, 2006, 10:03:47 PM »
I believe I was the one, two years ago or so, who made a similar comment.  And just as is being done know, people are taking it out of context.  Am I the only person who read the same statement to include the "NOT SO SICK"  and "NOTICE I DIDN"T CRITICIZE THE TRULY ILL" portion of the statement? 

Is there anyone here who doesn't truly feel that there are people who are HIV+ and are abusing the system? Which I do believe is the point this person was trying to make?

And I'm sorry.  Believing this is not necessarily "NOt knowing nothing about the reality of 'Living with HIV'", as one poster puts it.  It's simply being realistic and pointing out a flaw in the system. 

I'm sorry!  It irks to me no end when some other poster make a comment to someone esle who is HIV+ llike, "the author knows nothing about "Living With HIV", or  "I would ask all of you YOUNG people to get a clue..." and so on!
 
I have to ask.  I'm 35 and have been living with this disease for over 15 years.  Is that close enough to share this "flippant" and factual truth about society or should I wait anther 5 years?

Offline Cliff

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Re: Living with AIDS and working for a living?
« Reply #50 on: July 01, 2006, 04:50:28 AM »
Dennis,

Yes, there are people who abuse the system.  That I agree.  However, people abuse every system (whether it's taxes, education, welfare, social security, disability, not-for-profit, insurance etc..).  I think the issue is that whenever someone discusses disability, comments about "some" people abusing the system tend to make people, who are rightfully on disability, defensive.  It's as if they need to prove that they are truly disabled, less they be lumped in with the "some" who are abusing the system.

I don't know how those comments add much to the discussion.

I also don't understand how young people should be taking the blame for this.  Afterall, the person who made the comment also said that he was 5-10 years away from retirement.

Cliff

Offline allopathicholistic

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Re: Living with AIDS and working for a living?
« Reply #51 on: July 01, 2006, 06:22:21 AM »
Yes, there are people who abuse the system.  That I agree.  However, people abuse every system (whether it's taxes, education, welfare, social security, disability, not-for-profit, insurance etc..).  I think the issue is that whenever someone discusses disability, comments about "some" people abusing the system tend to make people, who are rightfully on disability, defensive.  It's as if they need to prove that they are truly disabled, less they be lumped in with the "some" who are abusing the system.

True. Y'know the year is half over. i should spend the next half waging war against HIV's assault on my energy & devising strategies for returning to work full time. I think I need to do that instead of boo-hooing. I miss having money to have fun and give myself treats. I miss it big time. In the past it was never a trait of mine to "watch my spending" ...Money (and savings) always seemed to be around - well not by magic of course- I worked - Cash was like a river, constantly flowing is what I mean. But now I DO watch my spending - Good Lord - It's uncharacteristic for me. The main battle will be energy - that goes without saying. Can't look to ephedrine, uppers, etc -- those things might hurt me in the long run. I'll have to beef up my holistic arsenal somehow. I intend to kick HIV's ass and post my victory speech here and in the Why Am I So Tired? thread.
« Last Edit: July 01, 2006, 06:24:35 AM by allopathicholistic »

Offline bear60

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Re: Living with AIDS and working for a living?
« Reply #52 on: July 01, 2006, 01:39:02 PM »
 " Am I the only person who read the same statement to include the "NOT SO SICK"  and "NOTICE I DIDN"T CRITICIZE THE TRULY ILL" portion of the statement? "  quote from Dennis
I want to know how you define truly ill..... less than 200 TCells....or do you have to be in bed with IV's hooked up to you?  If you are able to go to the gym and get a 2hour nap a day....does that mean you are not "truly ill" ??  Not So Sick....if you are able to work a few evenings a month for spending money to supplement your disability income are you therefore ready to go back to work? 
An AIDS diagnosis...less than 200 CD4Cells....used to be enough to get you disability.
I am with Moffie on this....... you young guys dont know what its like being over 45 and on meds for over 15 years AND suffering from severe energy loss but still "looking normal".......  on the street.
« Last Edit: July 01, 2006, 02:09:42 PM by bear60 »
Poz Bear Type in Philadelphia

Offline gerry

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Re: Living with AIDS and working for a living?
« Reply #53 on: July 01, 2006, 02:29:57 PM »
Bear60:

I think the issues surrounding disability in this country are a lot more complex.  I am not even referring to individuals who are abusing the system.  For those who are below the retirement age and have illnesses that are very expensive to manage, the choices become very much obscured when health care coverage options are limited to either obtaining it from work or obtaining it from government programs (with the latter generally linked to being declared "disabled").  There isn't a whole lot of options in the middle.  And almost everyone agrees that managing HIV without some kind of health care coverage is almost synonymous to not managing it at all.  ADAPs could provide coverage gaps, but we all know that these programs are under increasing pressures from underfunding. 

I think that if there is some way of providing alternative means of health care coverage to people with illness that's not necessarily linked to their employment, people would be more inclined to try to return to work without the threat of health care coverage being yanked away from them the moment they decide to re-enter the work-force.

Gerry


Offline gerry

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Re: Living with AIDS and working for a living?
« Reply #54 on: July 01, 2006, 02:38:13 PM »
Guess it depends on what you do for work. Keeping insurance is tied to work. My last SS statement/info stated "if you became disabled today you would receive $1550 a month”. That wouldn’t be much, but if I lived simple and no longer had all the gas/car expenses I could live on that. And getting my 401k I could pay off the house and most of what I owe. So I have thought about it. Working long hours, and nights to boot, it does get very taxing and I ask if its worth it? But in reality, I'm not really sick. I don’t feel sick. I don’t look sick. So I would feel a little guilty. And to be at the mercy of the "system" for your med coverage and any doc bills that pop up, I'd worry. Technically I was aids in the beginning. My numbers no longer fall in the aids category. So I don’t even know if I could get on SSDI. No idea how that works, or how the meds would be covered till SSDI kicks in. Too many unanswered questions. But if I did get sick or could no longer deal with holding down a job, I would not feel guilty about shooting for SSDI benefits. I'm 53 and I wouldn’t mind retiring, if I could. Still so much to explore on youtube an xtube. ;)

Randy:

Even if you apply for disability at this point and are declared disabled, the amount of money that you would be drawing from SSDI will likely disqualify you from getting Medicaid coverage.  This means that for 2 years after being declared disabled, you have to rely on either COBRA (in which case you would need to pay the premiums to maintain the  same health coverage that you were getting through work) or through some other programs such as Ryan White, or a hybrid (e.g., Ryan White paying for COBRA premiums, but this would depend on which state you're in).  Medicare coverage for the disabled does not kick in until 2 years after the disability approval for those who are under the age of retirement.  So truly, there are a lot more things to consider here when applying for disability that goes beyond being declared disabled.

Gerry

Offline jkinatl2

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Re: Living with AIDS and working for a living?
« Reply #55 on: July 01, 2006, 02:55:02 PM »
  So truly, there are a lot more things to consider here when applying for disability that goes beyond being declared disabled.

True stuff, that. It is not easy to qualify for disability. And I submit that in some ways, it makes for a harder life than anyone can imagine. Certainly, it makes for a financially destitute one. And over time, I have discovered, the center does not hold.

I have a car I cannot afford to fix. Pets I cannot afford to maintain through emergencies, and an apartment which I cannot afford to leave. Life as I knew it stopped when I got on disability, and it has been a heroic effort to slow the disintegration of time and events since.

I submit that people on disability, unless they are remarkably fortunate (and seriously well connected) and have under-the-table employment, do not have the good life that you think. And from all my ability to asertain, those who maintain an above-sustainance level standard of living are exceedingly rare, and rely on others who risk heavy fines and jail time in order to give them assistance.

It's a real serious trade-off. And though it might indeed save a person's life and health, it sacrifices that person's real future. Frankly, if I had the energy, I would certainly be out at clubs and venues partying away my existence. Nothing like abject destitution to make one a lot more zen.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Dennis

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Re: Living with AIDS and working for a living?
« Reply #56 on: July 01, 2006, 04:55:22 PM »
Well, as I mentioned a few years ago...When I was first diagnosed over 15 years ago, my t-cells were somewhere around 400.  The first thing my case worker advised me to do was apply for SSDI because it was so difficult and lengthy process.  Keep in mind I was 20 years old at the time.  Not knowing any better and thinking I was goin to die within 10 years, like I was told, I took her advise.  Was I able to work?  Yeah!  But I took her advise anyway.  I filled out the required paperwork and had doctor do the same.  Within 1 year, with no fighting, I was on disability.  It took years for both me and the government to smarten up and realize I didn't need to be on disability.  So here I sit, making monthy payment back to the government of over $4000, for what they consider overpayments. 

I guess my point is, if it was that easy for me, I'm sure there are others with the help of the case workers who are in the same situation I was. 

I'm not saying this to downplay the struggle some have getting SSDI and deservedly need it.  This was my own personal situation and I'm sure there are others out there taking advantage of this flawed system knowingly or unknowlingly. 

Offline bear60

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Re: Living with AIDS and working for a living?
« Reply #57 on: July 01, 2006, 05:08:00 PM »
Well...Dennis...thats the first time that I've heard of your situation.  Boy, I would be pissed at the doctor!!!!  That is kind of the doctors fault dont you think.....maybe you can sue the doctors..... you dont get SSDI without a doctor's approval and input.
I hear its MUCH MUCH harder now to get SSDI, so maybe that is a good thing.  It sure doesnt help you tho and I feel your pain!!! Dennis I really do.
However, I am glad that my partner has SSDI and because of it he is still with me.
AND>>>>> yes he has Medicare and Blue Cross Supplemental 65 (which I think he pays for) and ADAP to help with the drugs.......and collects disability from his old job.
« Last Edit: July 01, 2006, 05:10:33 PM by bear60 »
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Offline Moffie65

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Re: Living with AIDS and working for a living?
« Reply #58 on: July 01, 2006, 07:24:00 PM »
Listen up my friend.  There are many of us here that would give you both of our balls if doing so would give us the strength and ability to go back to work.   [/b]

........................"NOt knowing nothing about the reality of 'Living with HIV'", as one poster puts it. .........................................
I have to ask.  I'm 35 and have been living with this disease for over 15 years.  Is that close enough to share this "flippant" and factual truth about society or should I wait anther 5 years?


Dennis,

Please read BEFORE you go offffffffffffff.  If you had read my work history above, you would realize that I have worked for most of my time while covered by Disability.  Did I work for someone else?  Yes, before I was forced on my death bed to go in SSDI in 1995.  Have I continued to work since.......YES!  Can I work for someone else..................NO,  because I cannot work for more than three days without spending two in bed.  Do I WANT TO WORK?  Why would I volunteer to have my balls cut off for a job??????????????  And finally Dennis, please don't start misquoting me, as you obviously don't know the difference between a negative and a "Double Negative"  Annnnnnd.  When you get to 59, let me know how your flippant attitude towards me is holding up. 

Please just leave me alone.  Last time this discussion went on, you were in fact the originator of the same lame shit.  I will not participate any more.

OUT!
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Dennis

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Re: Living with AIDS and working for a living?
« Reply #59 on: July 01, 2006, 08:56:49 PM »
Moffie,

Do the new forums have an ignore button?  Apparently, if you feel that I am bothering you, I recommend using it for your own sanity. 

And why would you bother to stress your work history.  Did I or anyone ,at any time, accuse you of being on dissability prematurely?  I don't recall.  No need to explain yourself to me, as I follow your postings and blog.  I guess this is what Cliff meant by people getting on the defensive.  I personally don't get it, but to each his own. 

It is apparent you have an issue with the younger generation.  I'm not 59 years old.  I'm 35.  I am HIV.  Therefore, I do know what it's like to live with HIV.  And yes, I have been on my death bed, too.  Twice actually, only to recover to have to do it all over again one day.

Perhaps I'll share my ETIRE life story with you one day.  Only then will you realize age doesn't mean shit!  If your blogs and posts are any true indication of your life, then I've experienced more trauma and pain in my 35 1/2 years of life than you have in your 59.  Does this make me wiser than those younger than me or those that haven't experienced the shit I've been through?  NO! 

As far as flippant attitudes.  I think this one is a two way street.

Good Day Moffie.


Offline jkinatl2

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Re: Living with AIDS and working for a living?
« Reply #60 on: July 02, 2006, 05:51:29 PM »
It has been my personal experience that disability = rather abject poverty. Even with all benefits and opportunities available, the poverty level remains a constant. I cannot imagine anyone thriving under such conditions. It is sustainance-level survival.

I would avoid going on sate-sponsored disability for as long as possible, because it is extremely difficult to return to work and maintain medical intervention/prescription assistance.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Dachshund

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Re: Living with AIDS and working for a living?
« Reply #61 on: July 02, 2006, 06:42:28 PM »
I volunteer at our local ASO assisting with the food bank. We are able to give a bag or two of non-perishable food items every two weeks to the HIV needy. We wish we could do it every week, but we never have enough food. It's the kind of food that the working would never pull off the shelf and put in their basket. Yet it amazes (and humbles) me how appreciative everyone is to receive the help. People spend a half day on public transport to get a cheap jar of peanut butter to last them a couple of weeks. Ah the glamorous life. I could be wrong, but somehow I just can't believe the folks I see think they are getting one over on the system.

Yummy, powdered milk and Kraft Macaroni and Cheese.

Peace,
Hal
« Last Edit: July 02, 2006, 07:45:16 PM by Dachshund »

Offline ademas

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Re: Living with AIDS and working for a living?
« Reply #62 on: July 03, 2006, 03:27:30 PM »
I would guess the percentage of those with HIV/AIDS who are deliberately bilking the system for benefits  would be about par to those without HIV/AIDS who are deliberately bilking the system.
I'm certainly not so naive as to think it's not happening.
On the other hand, you can't really fake an AIDS diagnosis and an opportunistic infection...can you?



Offline Gary85741

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Re: Living with AIDS and working for a living?
« Reply #63 on: July 04, 2006, 11:25:42 PM »

     I'll just echo a few sentiments here...as a person on SSDI.  Social Security Administration is pretty conservative (strict) about approving disability claims.  I was disapproved on both the initial filing and the 'request for reconsideration.'  I then requested a hearing before an administrative law judge (who is a Social Security Administration employee.)
     Having trained myself in latter years to have zero expectations in life (hey it works for me) I was very relieved that not only was I approved, but she approved me on the spot during the hearing, and additionally, it was retroactive for the two years I'd been at this process.

     When one needs to stop working, one generally knows it.  Everyone will weigh their own factors and make their own decision.  I seem to have a comfortable level of chores and errands with which to keep up...so I'm not sitting around staring out the window...yet nor am I being run ragged and having to punch a timeclock.
     Sometimes I wonder how I did all these chores when I worked full-time (except I didn't have as many medical obligations then.)

     As an aside...what's interesting is some of the HIV poz ads on other sites in which the writer(s) state "You must be employed."  What a lack of empathy!  I trust however that if and when those people are no longer able to work, they will be fully equipped to be rejected because of it.
     That's almost as good as the ads (poz ad sites) which state "you must be healthy." 

Gary
Poz since '89. 
Current regimen: Rescriptor, Emtriva, Kaletra, Invirase, Acyclovir, Lisinopril, Lipitor, Prilosec, Valium, Testim, Nandrolone, Loperamidr, Marinol.

Offline megasept

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To: Anyone I Inadvertently Offended (like Moffie)...
« Reply #64 on: September 16, 2006, 12:58:09 AM »
OOOOps...I had no idea I (briefly) lit a wildfire. Hopefully only Moffie was offended (not momentarily taken aback) by my "not-so-sick...vs. "truly ill" comment regarding going on or not going on Disability. Clearly my comment was no "generalization" (Moffie's term) since I say my poz friends fit into both categories (not just one). I didn't say a word about medical or changing government definitions of disability, which I know little about. Nor was I concerned about some sort of "cheats", ethics, or taxes or any of that. Political fodder is not my thing and there are worse scandals at higher levels destroying our society.

I was speaking about the joy and good luck (I called it a "blessing") of being able to work so much, about "engagement" with the world (sick people can be engaged many ways besides working) as preferable to the isolation that often comes with severe or chronic illness. I was not dissing anyone sick (especially people who help others even while pretty bad off themselves), or anyone long gone, or anyone receiving Disability. If you doubt that, please reread what I wrote. Please don't ascribe someone's else's attitude to me.

Dennis reminds us age and HIV are not directly related. Still, mostly younger (than me), usually healthy people are told they have "got HIV". They go on this and so many sites. They try to envision their future. They are fearful, sometimes depressed (three of them, all under 40, have reached me on Mentor). It is nice to encourage them not with Pollyanna simplistic BS about "think positive and you'll do well", but with actual histories (lots of peoples'!)that are often more positive and full of promise than the "doom and gloom" they get from many sources (sometime General Practitioners). Not limiting ourselves more than we have to seems a pretty good way to live, and goes far beyond the specific concerns of HIV and medical survival. A lot of you already have some pretty successful philosophies I learn from, so lecturing seems ridiculous.

Since I said (as did so many others) a few things about my own history and health, and add a couple more now, I want to make clear this is not a contest with one another, although I like the idea of "cheating death"--but  know death wins eventually. I hope everyone here does well, including folks who may not have appreciated my postings.

As 35 year old Dennis correctly deduces, I am not young (49+++ years old actually)---with apologies to those of you who are old enough to think 50 is a baby.

When I work I save and save some more---the same way I saved up for a down and rehab on my first home (years before and years after diagnosis); so this was no ode to materialist notions, credit card debt, or late model cars. I am going to be real ill some day. I am trying to stay healthy as long as I can; I am also trying to build a secure cushion that will at least help me when I no longer can work. Maybe I can retire first, or maybe not. Nothing lost for trying.

Gary pretty much says you'll know when you're to sick to work. It really is that simple.
 ;)Gary is also so right about the "you must be employed" demand and worse (in my book) "D/D free" personal postings all over the gay Internet. It is so rude. We are on this Site because we have (who wrote this?) the same "unwanted companion." Reading these many postings reassure me that divinity is all around us.  8) 


Offline macbett

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Re: Living with AIDS and working for a living?
« Reply #65 on: September 17, 2006, 10:26:29 AM »
Hello everyone, second post here.

I was diagnosed 5 years ago, on that sad day, September 11 2001. Next day I quit my job, and by Halloween 2001 I relocated to Buenos Aires, Argentina, away from my family (parents, brothers and friends.) I wanted to start a new life, by myself, without causing any worries to those I love the most. So far it´s been a lonely life,  my levels, as of now, are CD4 8 / VL +100.000 . Last June I had PCP, and in July, Histoplasmosis.

As I relocated, I continued working. 2 years ago I started as a waiter/barman in a restaurant, full time (9 to 5), but because of the health issues, I am losing part of my salary. My boss knows about my health, and was pretty cool...until I needed rest, after hospitalization last June. I was told he wants to get rid of me...so I got another job. Currently, working part time 12-5pm, and full time 9pm-6am. I am all alone, so I need to keep my independence. And it´s difficult...I get too tired, still not recovered from histoplasmosis. But I need money+occupation. Without occupation, I guess I´d go crazy.

I am single, so thanx God nobody living at my expenses he he.

Offline Salteen

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Re: Living with AIDS and working for a living?
« Reply #66 on: December 15, 2006, 12:04:42 PM »
I have had it my whole life, went to school, played sports, went to college worked through college, graduated, got married, and now have two jobs!  SO yes there are others!

Offline allopathicholistic

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Re: Living with AIDS and working for a living?
« Reply #67 on: December 15, 2006, 04:21:45 PM »
The irony is that it has given me the time to take better care of myself and feel better, but to what end?  If I were to return to work full-time, I would be right back where I was within a few months.  I know this, because I've twice attempted to participate in the trial work period, and it took just a couple of weeks both times to know it wasn't going to work.
I'll never say never, and I would like to return to full-time, but I just don't see it heading that direction at the moment.

Hear hear. If your gut instinct is telling you not to go back to a certain field because it will likely eat your health alive, LISTEN to your instinct. Some fields can suck the life right out of you and your soul too if you're not careful.

Offline Queen Tokelove

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Re: Living with AIDS and working for a living?
« Reply #68 on: December 15, 2006, 04:51:01 PM »
It's great that folks can still work, unfortunately that is not an option for me. I was told by my doc to go on disability due to health issues along with being hiv + . It took me 3 times before I got the disability, the lump sum was nice but living month to month on disability really blows. I wish I could work again..
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

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Offline PositivelyYours

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Re: Living with AIDS and working for a living?
« Reply #69 on: December 15, 2006, 05:02:20 PM »
Hello,

Although I just found out about my status four months ago, I do work. I am a Project Accountant for a Commercial Real Estate Company.  Although some mornings I would rather stay in bed - It is very necessary for me to work.  I would not have it any other way.  The disability compensation that people receive in this country is horrible.  The government should be ashamed of themselves.

PositivelyYours

Diagnosed: 08/10/2006
08/31/06 CD4:240/VL:39,000
09/12/06 CD4:359/VL:50,000
11/16/06 CD4:509/VL:76,000 (Flu Shot)
02/13/07 CD4:270/VL:69,000
02/17/07 Developed the Shingles
02/20/07 CD4:326/VL (Not Tested)
03/20/07 CD4:484/VL:54,000
06/19/07 CD4:488/VL:51,000
09/18/07 CD4:372/VL:27,000
10/09/07 Took Flu Shot
12/18/07 CD4:408/VL:85,000
03/18/08 CD4:394/VL:116,000 (Still No Meds)
05/22/08 CD4:412/VL:63,000
08/13/08 CD4:362/VL:67,000
09/23/08 Took Flu Shot
10/15/08 CD4:340/VL:54,000
11/14/08 Started Atripla @ 9:45 p.m.
1/30/09 CD4:641/VL:<48 Copies
5/07/09 CD4:667/VL: Undetectable
12/02/09 CD4:759/VL: Undetectable
03/05/10 CD4:537/VL: Undetectable
03/16/10 Rec'd TB Skin Test, Pneumonia & Hep B Vac
04/15/10 Hep B & Tetanus Vac
6/10 CD4: 748 VL: Undet.

Offline Eldon

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Re: Living with AIDS and working for a living?
« Reply #70 on: December 15, 2006, 09:19:52 PM »
So here I sit, making monthy payment back to the government of over $4000, for what they consider overpayments.   

Hey Dennis...

If you do not mind sharing HOW was this determination made by the government?

"Don't Give Up, Don't Give In... Cause it is ALL within you to WIN!"

Offline Grinch

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Re: Living with AIDS and working for a living?
« Reply #71 on: December 15, 2006, 10:15:36 PM »
Still work full time., going to school full time because I know I can't keep up with the stress of my current job forever.

I spent 9 months on disability while undergoing chemo.  It is certainly possible to work with AIDS.  When I started back to work my CD 4 was up to around 100.

Just because you can go on disability doesn't always mean you should. I have little doubt that for me, spending all day without a job would only cause me to dwell on how bad I feel.  Instead I dwell on continuing on another day.
« Last Edit: December 15, 2006, 10:20:04 PM by Grinch »

Offline Eldon

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Re: Living with AIDS and working for a living?
« Reply #72 on: December 15, 2006, 10:30:31 PM »
Hey Grinch...

In accordance to what you have described above, I AGREE 100%.


"Don't Give Up, Don't Give In... Cause it is ALL within you to WIN!"

SFscruff

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Re: Living with AIDS and working for a living?
« Reply #73 on: December 15, 2006, 10:48:01 PM »
Eldon, I'm with you on wondering what's up with the '$4000/month' repayment of overpayments Denis reports.  If a person is approved for SSDI/SSi and begins to receive a stream of benefit payments, then the Social Security Administration has made the determination that the person is disabled by SSA definitions.  In no case have I heard of 'the government' seeking repayment of 'overpayments' when a person who has been receiving 'disability' notifies S.S. that they are no longer disabled and wish their benefits to cease.  The only instances I've heard of repayment is when fraud is involved.  I'm really interested in how this could happen as several of my buddies were on SSDI and then returned to work, and certainly didn't have to pay back 'overpayments.'  Did S.S. calculate the benefit stream wrong in the first place and then asked for their money back, if that's the case, that must have been one huge monthly check that got spent.  Darin 

Offline Eldon

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Re: Living with AIDS and working for a living?
« Reply #74 on: December 15, 2006, 11:10:38 PM »
Hey Darin...

I also AGREE with you on this particular subject matter. How did this occur after the Beneficiary was initially approved by SSDI and then there was a matter of repayment involved when the Beneficiary returned to work?

A very valid question indeed.


"Don't Give Up, Don't Give In... Cause it is ALL within you to WIN!"

Offline jcmiami

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Re: Living with AIDS and working for a living?
« Reply #75 on: December 16, 2006, 12:54:41 AM »
I am 43, was diagnosed with AIDS on 10/31/2006. Yes on Halloween of all days! I was in the hospital for 2 weeks with PCP and thrush. The PCP almost killed me cause I began to go into pulmonary arrest while in the ER (thank God not at home alone), my blood oxygen level was 79%, the body needs over 95% to function. I was never a smoker or drug user was able to pull through that then came the bomb blast of the AIDS diagnosis. MY CD4 count was 24 and viral load was over 650,000.
When I was finally discharged and was able to breathe normally on my own I could not wait to get back to work. I am not the homebody type and I wanted to return to "as normal" existence as I could and I wanted to "feel useful". I was placed on Atripla and heavy antibiotics; still on them as of this writing and I am doing OK so far. I am back at work full time in an office environment. My MD said that if I worked a job requiring exposure to toxic chemicals, heavy dust, garbage, etc or heavy manual labor then most likely I might qualify for disability.

SFscruff

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Re: Living with AIDS and working for a living?
« Reply #76 on: December 16, 2006, 10:15:16 AM »
Eldon, it is indeed a holiday miracle that I'm in complete agreement with you!  However, I don't want to hijack this thread, so I'll write something about working and having AIDS. 

I received my 'AIDS VIRUS/HLTV-III' (what HIV was called then) highly reactive Western Blot Test result in June of 1985 a few months before I was going to start a combined law and M.P.A. 5-year graduate program.  My doctor told me that I had about six months to live as he knew that I had been exposed to the virus in October of 1980 and said I'd already lived longer than could be expected.  I'd been volunteering as a practical needs support volunteer with an ASO and had been taking care of sick and dying friends and a lover, so I was very aware of the end of life issues of AIDS.  Needless to say, I didn't go on to graduate school and kept working in corporate finance, thinking that I would get some savings in the bank and good health insurance for when I got sick. 

My official AIDS diagnosis occurred in the 1987 when my first CD4 count assay revealed only 75/ul.  I wasn't showing any symptoms and kept on working in an occupation that I felt was personally pointless, although the money was great.  I started taking night classes at a community college in horticulture and at a university in landscape architecture and volunteered at the local botanical garden.  The company I was working for moved its operations to a distant geographically undesirable area of our nation where it snows in the winter and people live in houses with detached garages, but I wanted to stay in San Francisco close to UCSF and my friends and the livelihood I truly enjoyed and wanted to pursue.  I enrolled in a private health insurance plan with a ghastly monthly premium, huge annual deductible and astronomical co-pays.  I had also contracted Hepatitis C in an experimental protocol where a harvested blood product was infused into a recipient group, so I became medically co-infected, but alas, had no recourse as the company conducting the study reorganized legally into another entity and the consent to participate in the study acknowledged the risks of pathogen exposure.  I had a couple bouts of pneumococcal pneumonia and meningitis, which I caught early enough to not require hospitalization and only minimal medical treatment at home was required.  I was getting progressively more fatigued and peripheral neuropathy started developing in my legs while I was working as a self-employed garden designer and teaching private horticultural lessons. 

My doctor causally suggested to me that I might consider permanent medical disability as the demands of working, resting, and taking care of myself properly were too much.  I met with a benefits counselor at a local AIDS service organization, who has become a close friend, and she carefully reviewed all my options and the various programs available -- with plenty of time for questions and non-pressure thought and contemplation.  Her professional experience, knowledge and information were essential in timing and filing my SSDI application which was approved and made retroactive. 

I was still able to be self-employed on a limited basis and reported all my income to Social Security and could earn up to $500.00 per month in addition to my monthly benefit.  I dropped my private health insurance a few years later after a benefits counselor at a different ASO and I spent quite a few hours reviewing my financial and health situations and the myriad options.  The real problem, of course, is that's it's largely impossible to predict the future, especially the course of the disease and how it will progress in my life, not to mention changing medical treatments and governmental and non-government programs. 

I was already on disability when Hepatitis C treatments became available in 2002 and successfully cleared that virus with 24 weeks of side effect free chemotherapy.  I still have a whole number of manifestations of AIDS, although no raging OI's.  My viral load has been undetectable since starting HAART in 1998, but my CD4 count has never responded fully, only 'blipping' a couple of time over the 200 mark.  I'm currently have a 'Working Disabled' self-employment status and I faithfully and completely report all my income to 'the governments' and have various benefits adjusted downward or participation premiums adjusted upward to accommodate the income.  I love what I'm doing professionally, although the amount of paperwork required to document my meager self-employment income is incredible.  I'm hyper-organized and don't leave any questions or potentialities unexplored when making my life plans. 

I guess that if I had any experience to share and relate, it would be that in my personal experience, getting information from qualified professionals who specialize in benefits is well worth the time, effort and energy.  Luckily in SF, we have access to free or sliding-scale benefits counseling.  I have heard stories of some of some counselors giving incorrect information, however, I've also considered the reliability and honesty of the 'clients' telling these stories.  When I went to my appointments I was organized had read and researched in advance and was completely honest about my life -- it seems to have worked for me. 

I have fantasies of being free of this virus someday, but in the meantime, I accept my limited realities in their most painful, diminished and destructive manifestations and try to make something useful, meaningful and productive out of whatever amount of time I will be alive.  I'm also a compulsive volunteer, have broken a few hearts, and want to live to see the day when I choose my fundamentalist christian, right-wing republican parents nursing homes.

And there's a bunch of other stuff too that's not fit for posting!  An 82 year old friend of mine told me that my having AIDS seems to be a lot like getting old.  As the grey hairs appear in my beard and the  wrinkles along my facial smile lines multiply, I sense that she isn't too far off the mark.

Darin

PS.  Of course, I could get hit and killed by a bus this morning on my way to wrap X-mas packages at a store to raise money for an ASO...  Wouldn't that be a fitting end, ah, ha, ha, ha, ha.     

Offline vardneck

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Re: Living with AIDS and working for a living?
« Reply #77 on: December 16, 2006, 11:58:14 AM »
    I'm working a full time production job in a major Tire Manufacturing company. I'm just a grunt on the production line and work 40-60 hours/week even as I was first diagnosed in May of 2005. It's a difficult physical job and to beat it all, I work midnight: 12AM-8AM Monday through Friday. I HAVE to work, even after my starting counts were CD4 98 and VL>100000.
     I just started Atripla a couple of weeks ago and was on Truvada and Sustiva until then. Thank God I haven't had ANY side effects from the Meds.
      I also found out that the Atripla, without my prescription card,  was going to run $1100/month where as I'm paying $20/month because of my insurance plan.
       I can also schedule my Doctor appointments in the early mornings when I get off work. That's a BIG bonus because I have yet to miss ANY work. Sure, I don't like my job, but what's one to do?????!!!! I have bills and I'm going to work for a living. There's nothing wrong with that, unlike some friends of mine who think I'm insane.
        I just get lot's of rest and my husband helps out more around the house. God bless him!!!!
        Just keep your chin up, get plenty of rest, and monitor your health closely!!!!! You should be fine.
Poz 5/25/05
Sustiva/ Truvada
10/5/05 CD4 182 VL<400
1/3/06 CD4 240 VL<400
4/5/06 CD4 291 VL<400
6/26/06 CD4 369 VL<400
9/20/06 CD4 366 VL 418
Started Atripla 12/9/06
12/27/06 CD4 372 VL<400
5/23/07 CD4 468 VL<400
8/17/07 CD4 520 VL<400
11/12/07 CD4 513 VL<48
2/2/08  CD4 566 VL<48
5/17/08 CD4 601 VL<48
8/22/08 CD4 532 VL<48
11/14/08 CD4 496 VL<48
2/14/09 CD4 397 VL<48
5/22/09 CD4 566 VL<48

Offline Eldon

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Re: Living with AIDS and working for a living?
« Reply #78 on: December 16, 2006, 10:01:27 PM »
Hey Darin...

I just read over your brief history about you. Wow! You have definitely been on a road in this life that you have experienced a lot of different experiences. As I see through it ALL you have kept that inner determination within you to continue to move forward with your life. My hat goes off to you for the many different talents and creative energies as well as the accumulated knowledge that has been gained through your experiences in this life.

Horticulture is an admirable interest to have. Most definitely honesty has paid off in a big way for you. I send you best wishes combined with energies that you will continue on your chosen path in this life as you are.

Thank you for sharing with us.

"Don't Give Up, Don't Give In... Cause it is ALL within you to WIN!"

Offline Sky

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Re: Living with AIDS and working for a living?
« Reply #79 on: December 16, 2006, 11:55:26 PM »
Going into my 4th year being poz.  I work at the hospital modified full time (three twelve hour days) on the weekends, then have nursing school Mon - Fri plus clinicals.  I get tired sometimes but I tell myself that it'll pass and continue on.  To be honest, if it wasn't for HIV I wouldn't have found my passion in life...taking care of other people.
Poz since 2003.

Offline Coffeechick88

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Re: Living with AIDS and working for a living?
« Reply #80 on: December 17, 2006, 07:13:27 AM »
I have been able to keep working.  Since I've been on meds, my counts have rebounded excellently and I have much more energy.  Before, I was dragging ass from fatigue, would sleep all day, and it was all I could do to even work part time.  I am very thankful for what I can accomplish each day.  Plus, I couldn't  afford to go on disability even if I had to.  Assuming I could get any help, my payments would only be 680/month--very hard to live on in my area.  My job would qualify me as making too much, so I'd have to quit and make myself poor to get any aid.  I'd have to be put on a waiting list to continue getting my meds or else go to the drug companies, but I'd have to make sure I was impoverished enough to qualify for their assistance programs. 

















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Offline Gary85741

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Re: Living with AIDS and working for a living?
« Reply #81 on: December 17, 2006, 09:12:14 AM »

     A followup to an earlier posting I'd placed on this forum.  Of course I think it's great for those of us HIV+ who can continue working. 

     I hope those who can and wish to do so, continue working, but for the right reasons.  I see occasional comments alluding to the fact that not working would "drive [me] crazy" etc.  I went on SSDI in the late 90s because clearly it was sapping what little energy I had.  So that decision was right for me personally.  My health easily takes precedence over tying my self-worth to how much I work.

     Not working doesn't for us all necessarily beget the stereotype of sitting around watching soap operas and eating bonbons.  I keep comfortably, sometimes very busy every day with household chores...housework, laundry, fixing my meals, tending to mail, medical and other errands, etc.  Perhaps others don't do housework, eat out all the time, and/or let everything else go to pot.  So in that scenario, I imagine things get pretty boring.
     Moreover, I think the worst reason to keep working is because one thinks one is "supposed" to or it's expected (by the culture or whatever.)  One does one's self no favor to keep pushing one's self into poor health if doing so is for those irrational reasons.

     It can be part of what is to me rather sad in our culture and particularly in our subculture...where there seems to be practically a fixation on doing things because everyone else (supposedly) does them, which, then, robs us of our individuality.

Gary
Poz since '89. 
Current regimen: Rescriptor, Emtriva, Kaletra, Invirase, Acyclovir, Lisinopril, Lipitor, Prilosec, Valium, Testim, Nandrolone, Loperamidr, Marinol.

Offline rkeat25

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Re: Living with AIDS and working for a living?
« Reply #82 on: December 17, 2006, 09:35:40 AM »
I am working for a living as you put it.  I find that I work not only because I can (physically) but because it gives me a social outlet.  However, I would never work myself to death.  I took out the maximum long and short term disabilities plans from my employer and also invest heavily in our 401k retirement account with the anticipation that I won't necessarily make it to retirement age before I'll need to rely on that as income.

Offline Grinch

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Re: Living with AIDS and working for a living?
« Reply #83 on: December 17, 2006, 10:35:22 AM »

     A followup to an earlier posting I'd placed on this forum.  Of course I think it's great for those of us HIV+ who can continue working. 

     I hope those who can and wish to do so, continue working, but for the right reasons.  I see occasional comments alluding to the fact that not working would "drive [me] crazy" etc.  I went on SSDI in the late 90s because clearly it was sapping what little energy I had.  So that decision was right for me personally.  My health easily takes precedence over tying my self-worth to how much I work.

     Not working doesn't for us all necessarily beget the stereotype of sitting around watching soap operas and eating bonbons.  I keep comfortably, sometimes very busy every day with household chores...housework, laundry, fixing my meals, tending to mail, medical and other errands, etc.  Perhaps others don't do housework, eat out all the time, and/or let everything else go to pot.  So in that scenario, I imagine things get pretty boring.
     Moreover, I think the worst reason to keep working is because one thinks one is "supposed" to or it's expected (by the culture or whatever.)  One does one's self no favor to keep pushing one's self into poor health if doing so is for those irrational reasons.

     It can be part of what is to me rather sad in our culture and particularly in our subculture...where there seems to be practically a fixation on doing things because everyone else (supposedly) does them, which, then, robs us of our individuality.

Gary


This is all well and good except for one small detail.  If you are capable of supporting yourself you should.
If you are truly disabled you should certainly receive assistance so that you have food, clothing, and shelter. As well as full access to healthcare.

  If you (I'm not pointing at you specifically) are able to work and instead choose to expect society to support you then there is a problem.
Some people don't work because it's expected of them. They work because it gives them a sense of accomplishment. A sense of satisfaction.

  Please don't take this  wrong.  I understand and agree that people need to receive disability assistance.  I used it for 9 months. We as a society can't however, support everyone that doesn't feel like working. Our children, our elderly, and those that can't work have to come first.

In the end it comes down to this. I'm not responsible to ensure everyone in the entire world has all the niceties in life, neither is the government.
I and I alone am responsible for myself and my family. If the millions of people that abuse the "system" would live by that simple statement perhaps there would be more available to those that really need it.

Disclaimer.  The preceding statements were not directed at Gary or any other member of this community.  They were instead a simple commentary that used Gary's post as a jumping of place

SFscruff

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Re: Living with AIDS and working for a living?
« Reply #84 on: December 17, 2006, 10:38:37 AM »
Gary, excellent comments.  I wretch when I hear comments from people who are well enough to work reflecting their misconception that we persons having AIDS and being disabled have it made -- that it's like living in what they think of as perpetual frivolous weekends and vacations.  There's this guy in the neighborhood who told me once years ago that he couldn't wait until he was sick enough to go on disability and didn't have to work anymore.  When it finally happened, I reminded him of what he'd said and he was horrified that he'd been so foolish to say something so thoughtless.  I see him struggling to carry a bag of groceries and think, 'Wow, he actually though he wanted this?'  

Do you get what I call my 'Little Engine Who Could Moments' too?  It's like when I think, 'I could be working full time at the livelihood I've discovered I love -- right now!' and then I say to myself, 'Yeah Mary, get a grip, so you're feeling on top of it all at THIS MOMENT and you're contemplating tearing apart the flimsy safety net it's taken you years to weave because there's this little clear sky between the storms, duh!  Hey, Where's those bonbons?  What the f*** did I do with my bonbons!  Someone find me my bonbons!'  OK, not the bonbon part...

My physician tells me that taking care of myself is my job now and he makes sure to recognize my positive efforts.  He once said that my being disabled is like my retirement and to make the most of it, because it isn't going to last forever.  I love his candidness.  He also knows that he didn't suggest that I consider a disability status and will keep me on a working disabled status but still permanently medically disabled so that I could fritter away my remaining time.  I wouldn't be alive today and in good health, all things considered, if I were having to work full time.  I wouldn't be able to manage my own medical care, nourish my mind and body, and be palatable to my friends, acquaintances and handful of professional clients -- who all understand that I'm not operating at top physical condition and do indeed need some allowances and compassion.  Sometimes, I get a bit 'don't baby me' when I fear there might be some pity in people's reaction and consideration for me, but I'm acerbic and strong enough to make the pity-factor evaporate quickly.  

Gary, thanks for your comments!  

Scruff


  

  

Offline allopathicholistic

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Re: Living with AIDS and working for a living?
« Reply #85 on: December 17, 2006, 08:59:13 PM »
I wouldn't be alive today and in good health, all things considered, if I were having to work full time.

Yes, a job can kill. Mismanagement under cretins, inefficient co-workers who know nothing about integrity - you get the idea. Also remember very few companies (especially nowadays) will tolerate a worker who calls in sick a lot, or has to leave early or take long lunches for bloodwork, etc.  :'(
« Last Edit: December 20, 2006, 09:00:10 AM by allopathicholistic »

Offline naftalim

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Re: Living with AIDS and working for a living?
« Reply #86 on: December 17, 2006, 10:08:11 PM »
I used to be a workaholic, and enjoyed it, Since being diagnosed in May of 2005, my motivation has dropped. So, at present I work to both sustain what I have and to try to put some money away as I am 51 now. I drift between wanting to chuck it, sell my condos and live really frugally for a few years or the urge to start a business and make it happen. I am sure that many on this list have flitted between these emotions.

I know that weekends are hardest for me, as there is lots of time to be on my own, so not being busy with work and around people all week would be impossible.

If I were to take the frugal route, I would still have to be quite active, as thats the way I am, and I never want to be the kind of person who waits for the day to go by.

Offline chemistry001

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Re: Living with AIDS and working for a living?
« Reply #87 on: December 18, 2006, 03:21:31 AM »
Ended up in hospital with PCP and a CD4 of 9 when diagnosed, was due to start a new job as a teacher at that time but had to take the first 2 weeks off school, i now work mon-fri 7:00am till 9:30pm and all day either sat or sun. Completely shattered but loving it, i hope and pray that i can continue, disability has never been a thought for me, i guess im very lucky.

Love to you all

Paul xxx
Diagnosed 01/08/06
CD4-9, VL->500,000, CD4% 1
Started on Sustiva/combivir 22/08/06 changed to kivexa 18/09/06
02/10/06
CD4-50, VL-1496, CD4% 5
04/12/06
CD4-112, VL-125, CD4% 7.5
22/02/07
CD4-121, VL-<50, CD4% 9
29/05/07
CD4-125, VL-71,(re-done 149), CD4% 11
25/09/07
CD4 -231, VL-74, CD4% 15
Cant remember the next few dates
17/01/08  Kaletra and Truvada
CD4 - 281, VL-115
06/03/08
CD4 - 287, VL-178

Offline Gary85741

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Re: Living with AIDS and working for a living?
« Reply #88 on: December 18, 2006, 08:25:19 AM »

     Right on...SFscruff!!  [And Grinch...no offense taken.]

     I perhaps should add (though I guess this is already known, or should be,) that one doesn't self-approve one's self for SSDI or SSI.  That decision is obviously made by Social Security Administration which has a conservative interpretation defining disability and the resulting inability to work.

     When the SSA administrative law judge approved me at my hearing, she did so on the spot, and moreover, made it retroactive for the eighteen months or so I'd been at the process.  So it's up to those trained in the field to decide.

     Since then, I've never worked for one minute 'under the table' or otherwise.  If I felt working would not be counterproductive to my health...I would (legally.)  As an aside, I can't in my heart judge someone who does work under the table a bit since SSDI and certainly SSI don't provide a truly viable income.
     I did know someone once on SSDI who worked off the books 40-60 hrs. a week as a carpenter.  I resented his doing that, due to the arduous physical activity that obviously requires, as well as the quantity of hours.  Obviously he WAS able to work fulltime.

     If nothing else...one would hope all of us living with HIV/AIDS could acquire some empathy for others of us in the same general scenario.

Gary
Poz since '89. 
Current regimen: Rescriptor, Emtriva, Kaletra, Invirase, Acyclovir, Lisinopril, Lipitor, Prilosec, Valium, Testim, Nandrolone, Loperamidr, Marinol.

Offline aztecan

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Re: Living with AIDS and working for a living?
« Reply #89 on: December 18, 2006, 10:23:14 AM »
I was diagnosed in July 1985 and have been fortunate enough to be able to continue working. I still work full-time, usually with some extra hours thrown in just for good measure.

I know many whose health hasn't allowed them to do this and who are on disability. It is no picnic and they certainly are not rolling in the dough.

I also have known some who were very ill and have recovered to what seems to be good health. Unfortunately, some will never be able to work full-time again, and many not even part time. They do fine on a day-to-day basis, but when they add a job to the mix, their health suffers.

As I said, I have been very fortunate.

HUGS,

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

Offline allopathicholistic

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Re: Living with AIDS and working for a living?
« Reply #90 on: December 20, 2006, 08:59:33 AM »
I also have known some who were very ill and have recovered to what seems to be good health. Unfortunately, some will never be able to work full-time again, and many not even part time. They do fine on a day-to-day basis, but when they add a job to the mix, their health suffers.

Thanks for sharing this Mark. What you described is more common than anyone wants to admit  :'(  :'(  :'(  (just my opinion)  :'(  :'(
:'(  :'(
« Last Edit: December 20, 2006, 10:49:06 AM by allopathicholistic »

Offline dixieman

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Re: Living with AIDS and working for a living?
« Reply #91 on: December 20, 2006, 10:43:59 AM »
Good morning, I have been extremely fortunate in my employment and insurance. In 1991 I was diagnosed with hiv and until the new meds came around I was basically a giunea pig for UAB in Bham AL... also I tried ever herb, vitamin, holistic, you name it anything that gave hope. I had a doctor ask me once if I was still working... I had a come back answer? have you signed any disability papers? are you being paid? what an asshole he was but, I think he was basically trying to make conversation. Well after 15 years employed with hiv and I am underpaid but, with great health benefits and I'm fortunate to be from a family of means... a supporting family... since my diagnosis my Dad has passed, my mom etc... and now all I have left are my sisters... I'm still employed, have great co-workers, friends, a house and my cars are paid for...I've traveled the world extensively and the good ole saying... "Theres no place like home" allways rings in my ears...  talent in the arts to make extra money when needed... I have little to complain about. I guess I'll keep working til I drop dead but, this roller coster ride is paid for... I wish everyone a wonderful Holiday Season ... I have alot to be thankful for as with many on this site... Merry Christmas!

Offline jcmiami

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Re: Living with AIDS and working for a living?
« Reply #92 on: February 25, 2007, 08:38:10 PM »
On Halloween (of all days!!!) 2006, I was diagnosed with AIDS with a CD4 count of 24 and Viral Load of 650,000+! I was in the hospital with PCP during that time. In January 2007 I was back in the hospital again with regular pneumonia. Shortly after both discharges I was able to go back to work with a doctor's release...I do have bad days, particularly bouts of fatigue. I work in an office environment which requires more brain power that anything else. Sometimes I have sudden stiffness of the legs which I contribute to sitting down so long. I will also me starting my Master's degree(online) in 3/2007.
As someone else mentioned, the majority of men on disability come from the pre- HAART days. Some of the more current people are on disability due to cancers, severe IO's and other complications.
For me being home depresses me (unless I have absolutely no choice). I need to feel productive and "be doing something".
« Last Edit: February 25, 2007, 08:43:43 PM by jcmiami »

Offline Mike89406

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Re: Living with AIDS and working for a living?
« Reply #93 on: February 26, 2007, 12:50:47 AM »
I haver been working steady for 16 yrs . But since diagnoses in 2002 I havent had any real issues maybe a little fatigue from time to time, An episode of skin cancer, testile cancer, and hernia operation.

I believe if you dont work when you can be working it leads sometimes to depression or boredom and in some extremem case can lower life expectancy when you arent doing something to keep you're mind busy. But of course there are times when some cant work due to hospitalizations, physical limitations and disablity etc..

Amazingly I also started college taking night classes last year and am happy to say its going good. despite the Sustiva high from time to time. My higher learning has actually benefited me in my studies.

Offline RevMC

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Re: Living with AIDS and working for a living?
« Reply #94 on: February 26, 2007, 09:53:41 AM »
I tested positive just about 19 yrs ago and went on disability right away, 235 t count plus I was diagnosed with Polycythemia Vera (high hematic rate and hemoglobin counts).

I still managed to work part time, go to cosmetology school, own my own business, work towards my BA degree and am stilll working.

The only reason I'm not working full time and getting off disability, for the main reason, is the medical benefits.  As long as I make under a certain amount per month from working it doesn't affect my disability status.

Disability does suck most of the time.
Part of my story: "Sale Of A Lifetime" POZ December 2003
http://www.poz.com/articles/172_752.shtml

Started on Truvada and Viramune on 2/15/07

Jan 8, 2007   t-cells 215  Viral Load 10,000  24%
March 26'th  T-cells 306   Viral Load  UNDETECTABLE
June 2007 t-cells 375 Viral Load UNDETECTABLE
August 2007 t-cells 290 Viral Load UNDETECTABLE



Love and Light and Reiki sent your way,
Rev. Michae

Offline jkinatl2

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Re: Living with AIDS and working for a living?
« Reply #95 on: February 26, 2007, 08:31:59 PM »
Just what are the details of Disability anyway?  Never been on it.  Can you live reasonably well?  Does it pay the same amount as you would have made at your job or is it just minimum money like Un-Employment?


It is on a sliding scale based on what you made at the time you were disabled, assuming you were in the workforce long enough to qualify.

For some people, it seems to keep them fairly comfortable. For others, it is simply poverty level living, with no realistic way out without risking benefits including prohibitive medical costs. At least that's the deal in the USA.

Me? I get about six hundred dollars a month, and after rent, utilities and the like are spoken for, that leaves me with a hundred dollars for food and entertainment. A month.

Given that I average two or three good days a week, and the days in which I exert myself are normaly paid for by several days of bedrest, I am lucky I am doing as well as I am.

But please, do not for a moment believe it is anything resembling a windfall or a retirement.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

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Offline jcmiami

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Re: Living with AIDS and working for a living?
« Reply #96 on: February 26, 2007, 08:54:25 PM »
What is sad that it is a "luxury" getting sick in this country.
If you are a working person and your employer offers poor insurance or none at all, get ready to pay a ton of bills (for example: services your insurance does not cover or severely restrict). As long as hospitals, MD's, etc... know you are working they expect payment - even if it is monthly partial payments ( ( I am living through this now)
Some employers offer no short term or long term disability. Mine only offers long term  disability but that kicks in after 90 days of illness - what happens in the waiting time?  FMLA does guarantee employment but your are not being paid during that time (boy do I know this) - what happens you deplete your savings just to survive. LET ME TELL YOU IT IS TERRIFYING!!!! I am single and a one salary person - it was humiliating to ask friends & family for help.
I have a friend who is lawyer who specializes in bankruptcies. He says he sees more & more clients wanting to file for bankruptcy due to a severe illness and mounting medical bills.
Something needs to be done...
« Last Edit: February 27, 2007, 08:46:58 PM by jcmiami »

Offline Longislander

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Re: Living with AIDS and working for a living?
« Reply #97 on: February 26, 2007, 09:12:16 PM »
JK- you made me take out the yearly statement from SS and look at it. It says if I become disabled I would get $1806/month, based on my earnings . Much more than what you get, but definitely won't pay the mortgage!

Not sure where you live but there is no apt in NY for $500/mo :o, so I guess I'd be moving to the sunny south?!
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline Brandy Dawn

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Re: Living with AIDS and working for a living?
« Reply #98 on: February 27, 2007, 03:43:20 PM »
when I first got my aids dignous I got pretty sick shortly after that was 8 years ago, two years I went back to school and last year I went back to work so I work and go to school. I work at a truck stop. my favorite saying when someone asks me what i do for a living I say"I turn on truckers"  :o hehehe my CD4 count is at 459 the highest its ever been it was at 54 when I was at my sickest I'm undetectable and have been for about 6 years now... so to answer you question I'm kind of in the middle I was on ssi but as soon as I was able to I went back work...
Brandy Dawn
Live in the Moment

"What if everything we see and seem is nothing more then a dream within a dream"
-Poe

Offline jkinatl2

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Re: Living with AIDS and working for a living?
« Reply #99 on: February 27, 2007, 04:17:16 PM »
JK- you made me take out the yearly statement from SS and look at it. It says if I become disabled I would get $1806/month, based on my earnings . Much more than what you get, but definitely won't pay the mortgage!

Not sure where you live but there is no apt in NY for $500/mo :o, so I guess I'd be moving to the sunny south?!


Sadly, the only thing that helps me live here is section 8 housing, used for low income and disabled people. The waiting list to get on Section 8 housing is roughly ten years long, I think. About five years ago, they had an "event" at the Braves baseball park where people could go and fill out forms to be put on the waiting list for housing in the Atlanta/GA area. I believe that roughly ten thousand people showed up.

Nowadays, it's REALLY difficult to get hooked into the services like SSDI and the like. Most people require legal intervention and a couty hearing, and even then it's a crapshoot.

Bottom line. If you have AIDS, and are not already wealthy and well taken care of, prepare to be poor. That axiom has not changed in the last twenty years - and given the current political climate, the dismantling of ASOs, the flat funding of Ryan White, and the cavalier and judgmental attitudes towards those diagnosed, I do not see that changing anytime soon.



"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline Bucko

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Re: Living with AIDS and working for a living?
« Reply #100 on: February 27, 2007, 08:47:12 PM »

Bottom line. If you have AIDS, and are not already wealthy and well taken care of, prepare to be poor. That axiom has not changed in the last twenty years - and given the current political climate, the dismantling of ASOs, the flat funding of Ryan White, and the cavalier and judgmental attitudes towards those diagnosed, I do not see that changing anytime soon.


Chalk me up as one of the working poor, without health insurance and reliant upon Ryan White for my meds, the income restrictions of which (here in SoFla) are roughly 1/3 what I was making in 2001.

Being poz has made financial issues a huge burden to live with.

Brent
(Who can go to the food bank once a week if he likes)
Blessed with brains, talent and gorgeous tits.

The revolutionary smart set reads The Spin Cycle at least once every day.

Blathering on AIDSmeds since 2005, provocative from birth

Offline jcmiami

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Re: Living with AIDS and working for a living?
« Reply #101 on: February 27, 2007, 08:51:20 PM »
www.socialsecurity.gov...This is the link for Social Security - enter AIDS/HIV (disability) - no wonder you need a lawyer....JK is so right!
I too live in SoFL(Miami) like Bronco - there is minimal to no assistance for HIV/AIDS people. Yeah we have the infamous yearly "White party" (aka just another sex/drugs circuit party ) to raise money but where is the money going???? - it has become a joke - please don't get me on that...
« Last Edit: February 27, 2007, 08:56:18 PM by jcmiami »

Offline living eyes

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Re: Living with AIDS and working for a living?
« Reply #102 on: March 17, 2007, 12:10:41 PM »
I was diagnosed back in 2003, and went into panic mode.  I gave up my job, at the insistance of my physicians, and went on disability.  Then when I made a major comeback healthwise, and I told them I wanted to go back to work, they told me it would be hard to get back on disability.  Well, I went against their advice, and tried the 9 month trial period, and went to work at a job with a wireless company that my cousin got for me, but it was way too stressful for me, with people yelling and throwing phones at you, etc.  So I have 1 month left on my trial period, and I am going to go for it, and if I get sick again, then I still have a 5 year window (according to SSA, whom I spoke to personally), and as long as I watch my hours and amount of money I make, then I am ok.  The only thing is, if they offer any health insurance (group plan) or anything I will have to let them know that I am currently on Medicare, and that I would have to give it up if I decide to take it.  With the donut hole in most of the Part D plans, I would rather have the 90 day waiting period for insurance, rather than pay out thousands for meds.  April 1st I am going to actively pursue employment, and I have some leads as to jobs that I am more suited for. 

One thing I want to tell everyone, even if your physicians reccommend disability, don't take it, unless you are absoulutely sure that you can't go back to work.  I know some physicians think it's in your best interest, but your best interest is only known by you and you alone.  If you think you can work, and want to continue on, please do so.  HIV is NOT a death sentence, which we all know, and there is no reason why we can't continue to work, until we get to the point where we need disability.  In my case, the advice given to me has been the worse that I have ever gotten in my life, and if I don't go back to work, I'm afraid that I will just fall into severe depression and not want to do anything anymore, and volunteer work, which may be fine with some, is not going to help me in anyway.  I even tried part-time, but they place I applied decided to go full-time with the position, and I was not able to work the hours they wanted.

So, for those who are still working, kudos to you.  Just don't be afraid to continue to do so.  If you become ill to the point that you can't, then is the time to start looking at disability.
Life is what happens to you, while you're busy making other plans.

Offline Ant

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Re: Living with AIDS and working for a living?
« Reply #103 on: April 03, 2007, 05:14:23 AM »
Diagnosed 1994, no treatment required for about ten years, gave up a crap job and travelled, came home, retrained as a teacher and have done that ever since full time and full on until recently when I hit a blip.

The first blip in ten years rendered me totally fatigued for about two months.

Back to work again next week and now having disclosed at work and being protected under the Disability Discrimination Act 2005 I have arranged to have some adjustment to my job i.e. something more flexible. During my disclosure I have only received a lot of understanding and support but I guess it's not like that in all countries.
'Life can only be understood backwards; but it must be lived forwards.' Soren Kierkegaard

 


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