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Author Topic: How did we do it?  (Read 5534 times)

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Offline Dachshund

  • Member
  • Posts: 6,058
How did we do it?
« on: March 16, 2008, 02:16:38 PM »
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. ;D Thanks for letting me share, I know you LTS' understand.

Hal :-*

Offline MOONLIGHT1114

  • Member
  • Posts: 1,918
  • Cheech 2.2.94 - 4.23.10 We miss you so much!
Re: How did we do it?
« Reply #1 on: March 16, 2008, 04:22:10 PM »
Yes, we understand, Auntie.  You've come a long way.  :)
HIV+ since '93, 1/12 - CD4 785 and undet.   WOO-HOO!!

Offline J.R.E.

  • Member
  • Posts: 7,424
  • Joined Dec-2003 Living positive, since 1985.
Re: How did we do it?
« Reply #2 on: March 16, 2008, 09:14:40 PM »

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
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg






Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/24/15,  t-cells are at 359,   Viral load remains <40

Current % is at 11%

 63 years young.

Offline BT65

  • Member
  • Posts: 10,466
Re: How did we do it?
« Reply #3 on: March 16, 2008, 10:26:56 PM »
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.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline aztecan

  • Member
  • Posts: 5,504
  • 30 years positive, 58 years a pain in the butt
Re: How did we do it?
« Reply #4 on: March 16, 2008, 10:57:02 PM »
,,, 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.


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

Offline redhotmuslbear

  • Member
  • Posts: 605
  • A genuine certified freak of nature, and a hot one
Re: How did we do it?
« Reply #5 on: March 16, 2008, 11:03:23 PM »
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.

"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline sharkdiver

  • Member
  • Posts: 1,352
Re: How did we do it?
« Reply #6 on: March 17, 2008, 12:02:25 AM »
All I can really say at the moment is I am so  glad you are here Hal, really really  glad

(who had to come back and edit this morning because he was a bit too emotional when he wrote this)
« Last Edit: March 17, 2008, 08:55:48 AM by sharkdiver »

Offline AlanBama

  • Member
  • Posts: 3,658
  • Alabama: the 'other' 3rd World Country!
Re: How did we do it?
« Reply #7 on: March 17, 2008, 12:14:35 PM »

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,
"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 Jeffreyj

  • Member
  • Posts: 1,403
Re: How did we do it?
« Reply #8 on: March 27, 2008, 01:26:22 AM »
You should be proud, you survived it all.

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

Glad you are still here!
Positive since 1985

Offline leatherman

  • Member
  • Posts: 6,750
  • Google and HIV meds are Your Friends
Re: How did we do it?
« Reply #9 on: March 27, 2008, 08:58:06 AM »
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!

leatherman (aka mIkIE)

So we put our hands up like the ceiling canít hold us
"Can't Hold Us" - Macklemore & Ryan Lewis

chart from 1992-2015 Reyataz/Norvir/Truvada

Offline rondrond

  • Member
  • Posts: 1,729
  • 22 years HIV+ yet a yard could be the death of me
Re: How did we do it?
« Reply #10 on: April 10, 2008, 10:37:46 AM »
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..
"I'm not done yet"....Glen Campbell

"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Aug09 Diagnosed: COPD

Tcells 700

Offline Miss Philicia

  • Member
  • Posts: 24,793
  • celebrity poster, faker & poser
Re: How did we do it?
« Reply #11 on: April 10, 2008, 02:38:46 PM »
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.
"Iíve slept with enough men to know that Iím not gay"

Offline BT65

  • Member
  • Posts: 10,466
Re: How did we do it?
« Reply #12 on: April 10, 2008, 02:48:13 PM »
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.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline AndyArrow

  • Member
  • Posts: 1,196
Re: How did we do it?
« Reply #13 on: April 11, 2008, 12:27:54 PM »
-- 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.
« Last Edit: April 11, 2008, 12:32:01 PM by AndyArrow »
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne


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