How did we do it?

[Dachshund]

So I receive a letter from the social security administration yesterday. The letter shows how much you've paid in and what you can expect to receive when you retire. It broke it down by years. It was kinda interesting to see when you started working etc. So I was looking it over and thought this can't be right because it listed a year in which I'd made only $1,555.00 for an entire year. Then it dawned on me. That was my AIDS year. That was my lost year. That was the year I didn't care. That was the year that didn't matter. That was the year that everyone I knew was dying. That was the year I was dying.

I know folks can rattle off the dates and times and places with ease, reciting their AIDS history by the book, but I've never been able to do that. Maybe that's my defense mechanism, I don't know. I do remember that I'd blocked that year of living on a friend's sofa, selling everything I own in a yard sale and living that awful death filled year in a daze.

Now I just have to shake my head and think, how the fuck did you survive?

$1500 in a year? I spend more than that on Sam in a month. Thanks for letting me share, I know you LTS' understand.

Hal

[MOONLIGHT1114]

Yes, we understand, Auntie.  You've come a long way. 

[J.R.E.]

When I look back at it, I often wondered how I survived. Especially throughout 2003. To be quite honest, I don't know how I managed to continue working, during 2003. I've taken a big loss in income, when neuropathy started, and I was fortunate enough to stay with the company, just in another division. It took an awful lot of decisions and planning, to try to make it on the lowered income.

Yep, I love those annual letters from the Social insecurity admistration ! The amount of pay that I lost over these past 3 years due to job change was, welll you know.....


We do understand----Ray

[BT65]

Oh, I understand perfectly.  And I can't recite verbatum all the 'AIDS years' either.  But I do remember when I got the horrible wasting, went down to 78 lbs, sent my daughter to live with my sister in Arizona, had Hospice come in etc.  And while AIDS wasn't as bad here as it was in places like San Francisco, all the people I knew were dying like bugs hitting the 'zapper.'  All the funerals, seeing part of the quilt at Notre Dame, all the gloom filled days, etc. etc. etc.  We all know what it was like. 

Oh yeah darling, I understand.  Like I tell people, we're some tough bitches.

[aztecan]

,,, all the people I knew were dying like bugs hitting the 'zapper.'  All the funerals ...

Oh yeah darling, I understand.  Like I tell people, we're some tough bitches.

I couldn't have said it better.

HUGS,

Mark

[redhotmuslbear]

Yikes!  Another part of living with HIV that I'm glad genetics got me around.  Still, I got slapped with memories of my serocoversion illness period (10/82-3/03) while looking through college yearbooks today.  I could feel the saoked sheets, swollen glands and tender lymph nodes all over, and the repeated tests for mono and other illnesses that kept coming back negative.  Whenever I saw the same things happen to friends in the years that came, I buried my head a little further in the sand -- as I often say, denial is a treatment option.

I got the same SSA statement and marveled at how far I had come and my mere survival, given that neurosurgeons had several times either given me up for dead or told my family to expect my passing by age 30.  The best revenge is a life lived well.

Namaste,
David

[sharkdiver]

All I can really say at the moment is I am so  glad you are here Hal, really really  glad

love,
Sharkie
(who had to come back and edit this morning because he was a bit too emotional when he wrote this)

[AlanBama]

Hal,

I'm glad you made it through that awful year.    It does seem almost surreal, looking back on all the "sick years" doesn't it?   Someone asked me yesterday "what year was it you had the blood clot in your leg?" and I swear I cannot remember.

I understand perfectly what you mean about using it as a 'defense mechanism'.   My memories of hospital stays are on the blurry side, for the exact same reason.

hugs to you,
Alan

[Jeffreyj]

Hal,
You should be proud, you survived it all.

Like Bettytacy said, we are all some tough ass bitches.

Glad you are still here!

[leatherman]

all of us that have survived the hard times should be proud! Not only for surviving this illness but the accompanying poverty.

Unfortunately, I vividly remember all the "bad" dates for Randy, all the "bad" years for me, and now I'm starting the list for Jim's "bad" times. Sigh. Sometimes I wish I "could" forget it all. 

Because I'm still repaying an overpayment from SS (ha!    that's what I get for trying to work a few yrs.) I have survived on just over $5000 for each of the last two years - with one more to go before it goes back over $7000 a yr. I'll feel "rich" again next April. LOL

But at least I'm in much better health than I was yrs ago, lying in a hospital nearly dying with PCP. I haven't been back in the hospital in 9 yrs and 12 days!

[rondrond]

Hi,
I am in the SSDI filing process. When it says, if you become disabled, this is the amount you will receive, is that the amount you got or did you get something else?
just curious..

[Miss Philicia]

Yes, it's the amount you get if/when your SSDI is approved, and then it's adjusted (slightly) at the end of each calendar year for "cost of living" increases/inflation.   Keep in mind, however, that once you go on Medicare Part A/B that there will be a monthly deductible from your SSDI payment as a premium.  I forget what it is this year, and sadly it's been going up at a rate higher than what the cost of living increase is each year, or close to it.

edit:  actually I happen to have my 2007 Benefit statement sitting on my desk, and the monthly premium deduction last year came to $93.50  I think it was $60/mo when I first went on it 4 years ago.

As far as the premium for Medicare Part D (which covers meds) mine is paid by the state of Pennsylvania, but I don't think that this is the case for others here in different states, and in fact the first 2 years of Med. Pt. D I was badly informed by my case manager and I was shelling out a further $55/mo for a premium that I wasn't supposed to be paying for.  THANKS CASE MANAGER -- that grand total wasted came to about $1000.

[BT65]

Rond, Medicaid (in my state-Indiana) pays for my medicare premiums (A/B & D).  So remember to check that out and see if your state does as well.

[AndyArrow]

-- as I often say, denial is a treatment option.

I got the same SSA statement and marveled at how far I had come and my mere survival

Wow ... I was completely living in denial when I was first treated.  After each appointment I would just throw away the copies of my results that the doctor gave me.  I didn't want to think about it.

My SSA statement always looks funny because I worked for Amtrak for many years and didn't pay into social security (they have their own railroad/government retirement plan) so my SSA statement shows no work for 15yrs.