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Author Topic: Hello . . .  (Read 5320 times)

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Offline Assurbanipal

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Hello . . .
« on: January 15, 2008, 07:30:41 AM »
… and thank you.

 Thank you to the members of this board.  There is bravery in putting so much of your self out in public on the net. The comfort and kindness you give to each other also helps a much broader audience of readers. 

Thank you to Mr. Staley and the moderators who create and maintain this space.

I've been a guest/lurker for the past several months.  While I found the POZ site when I was on disability leave in 2006, I only ran across the forums in an internet search a few months back.  Idly browsing a few posts I came to Emeraldize’s reply to a post.  I no longer remember the issue, but I remember a message that was a blend of concise education, compassion and fundamental kindness.  Unexpected, supportive, touching and engaging;  I read on. I found humour, care and kindness ( . . .and the odd spat   ).  And so this site has become part of my daily routine .

My Story
I was sick for about half of 2006 and was diagnosed HIV+ / AIDS in late spring 2006. It was my third bout of pneumonia and after going on oxygen support I wound up in the hospital.  I had PCP pneumonia, thrush, a T-cell count of 40 and a viral load over a million.  Later I found out the skin bumps  were molluscum contagiosum.  A week in intensive care and a week and a half total in the hospital;, a month on oxygen an then 2 months on disability.   Started on meds (Kaletra / Truvada) a couple weeks after getting out of the hospital .  The doctor suggested an infection date of 9 or 10 or more years prior.

After 2 months on disability, went back to work part time.  It was a month or two earlier than the doctor initially recommended, but I talked her round and she was pretty comfortable with my physical progress. The job is intense, averaging 60-80 hours a week, but  I started back at 20 hours a week.  As I ramped back up 10 hours a month it became clear to me and my doctor that 70 hours a week was no longer tenable.  So, met with the boss and worked out a plan to retire in stages.  I dropped to part time status during last year and will gradually finish up over the next 6 months.  And then . . . the future beckons.  Reading these boards I know I'm very lucky in that I still have a capacity to work full time and a little more; and perhaps if the counts continue to improve I will regain my full stamina.  But, for now I'm taking steps and, while it would not have felt sufficient in the past, it is now.   

I've a mixture of emotions.  In 2006 I could feel death approaching.  When the first and then the second round of antibiotics and bed rest did not work.  When I had to rest on the landing before taking the rest of the stairs, and then to rest halfway to the landing and then after three steps, two steps. . . The time I woke up drowning and unable to cough, calculating how many seconds and whether I could get to a knife for an amateur self tracheotomy.   Being put on oxygen support.  The memory of those days is still vivid and present each day. But after a year and a half on HAART things are much better now; I can walk, sing,  and dance (embarrass the children) much as before and, until a recent broken arm, work out and play in the garden. 

The contrast is motivating and empowering. For those who fear starting meds, I can offer assurances from recent experience that the alternative can be far worse.

I'm very grateful for this site and for the pioneers, some of them here, who lobbied for research, tried med combinations  and so willingly shared their lives and trials.  I'm happy that I did not die in 2006, that I had the opportunity to rethink priorities and act on them.  Each day of relative health, of connection with my family and friends is a blessing and I've become much more likely to stop and recognize that blessing on a daily basis. I'm grateful to have a nervous doctor, who looks after me with innate and sometimes even irritating caution. But I wish  . . . that I could apply the same intensity and focus, the same stamina. . .  I wish that I were not tied to a dosing schedule.  . . . I wish I did not need to fear my blood would harm.

But mainly, I'm happy and grateful for each day. And when things are a little dark, I'm glad to have found this place and all of you.

Assurbanipal
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline BT65

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Re: Hello . . .
« Reply #1 on: January 15, 2008, 08:21:47 AM »
Hey Assur, welcome to the forums.  I enjoyed reading your story.  It's full of hope. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline aztecan

  • Member
  • Posts: 5,384
  • 29 years positive, 56 years a pain in the butt
Re: Hello . . .
« Reply #2 on: January 15, 2008, 09:39:12 AM »
Hey Assur,

Welcome to the forums. I am glad you have joined in and look forward to hearing more from you.

That was quite a story and I am very happy you have made it through to begin life again.

So, since you sing, what's your favorite? I like show tunes (go figure). Perhaps one day we can get together and sing our hearts out - and really embarrass the children.

HUGS,

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

Offline minismom

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  • Quocumque jeceris stabit
Re: Hello . . .
« Reply #3 on: January 15, 2008, 08:10:32 PM »
Assur,
Welcome to our family. 

Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Matty the Damned

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Re: Hello . . .
« Reply #4 on: January 15, 2008, 08:14:06 PM »
Hey Assur!

Welcome to the Forums. I love your avatar. It's a Persian bas-relief, is it not?

MtD

Offline jabez

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  • Posts: 97
Re: Hello . . .
« Reply #5 on: January 16, 2008, 12:58:13 AM »
Your number have REALLY improved dramatically!  What an inspiration.  Welcome to the forums. 
Sept 2007 -- CD4 = 68; VL = 469,000
Started Atripla Sept 21, 2007
Nov 2007-CD4=217;VL=332
Feb 2008-CD4=237;VL=<50
Apr 2008-CD4=271;VL=66
Aug 2008-CD4=440;VL=52
Jan 2009-CD4=403;VL=61
May 2009-CD4=480;VL=129
Sep 2009-CD4=376;VL<40
Jan 2010-CD4=476;VL<40
Jul 2010-CD4=539;VL<40
Jan 2011-CD4=461;VL=53
Jul 2011-CD4=515;VL<20
Jan 2012-CD4=506;VL=54
Aug 2012-CD4=440;VL=21
Jan 2013-CD4=447;VL=<20
Jul 2013-CD4=406; VL=<20

Offline Assurbanipal

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Re: Hello . . .
« Reply #6 on: January 16, 2008, 07:43:15 AM »
Thanks for the replies folks.  While browsing the forums, I've seen your helpful responses to poster going back a few years and its nice to "meet" you. 

MtD - I found the avatar looking for Assyrian bas reliefs -- I'd seen similar ones in a book, but its amazing what people upload to wikipedia and other places on the web This one was tagged as neo-Assyrian from the British Museum .

Mark, I love the show tunes, operettas (Nelson Eddy/ Jeanette MacDonald!) and a lot of early stuff too.  Love to sing with you.

Jabez --thanks for the note on the numbers, but the latest T-cell count was a week after I broke my arm and total Tcell counts were "high" so I'm not counting on it to last.  And having spent a month typing with the left hand I certainly wouldn't recommend it as a therapeutic intervention   ;D  Still I'm happy the percent is marching in the right direction.


Thanks for the welcome Mum and Bettytacey -- your posts are always ones I read with interest

Assurbanipal
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline BT65

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Re: Hello . . .
« Reply #7 on: January 16, 2008, 09:53:08 AM »
Hey Assur, how long will your arm have to be in the cast? 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Assurbanipal

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  • Taking a forums break, still see PM's
Re: Hello . . .
« Reply #8 on: January 17, 2008, 08:46:15 PM »
Hi Bettytacy
Sorry I missed your question (there's so much more to look at when you register than when browsing as a guest!)  Actually yesterday was my last day in a brace -- 6 and a half weeks from splint to cast to brace and I'm free again!  Of course, it still feels like the hand will fall off if I hold it in certain positions, but the doc assures me that is "just the muscles stretching"   ;D

-A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Matty the Damned

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Re: Hello . . .
« Reply #9 on: January 17, 2008, 09:39:52 PM »
Assurb,

You've taken your name from this Assurbanipal yes?

MtD

Offline Assurbanipal

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  • Taking a forums break, still see PM's
Re: Hello . . .
« Reply #10 on: January 17, 2008, 09:56:13 PM »
Yes . . . but no competition with her majesty the Queen intended
Just a common, if a bit bookish, Ass here

Assurbanipal
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Matty the Damned

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Re: Hello . . .
« Reply #11 on: January 17, 2008, 10:32:07 PM »
Heh. I keep reading your name as "Assburn".

;)

MtD

Offline Iggy

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Re: Hello . . .
« Reply #12 on: January 18, 2008, 12:27:10 AM »
Assur ( is that a correct abbreviation of your handle, btw?)

I greatly enjoyed reading your post.  Not for what you have gone through, but for the contact and perspective that you were able to provide with it.

I welcome you wholeheartedly to the boards and am sorry that you had cause to find us.

All my best,

Mark

Offline bryonut

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Re: Hello . . .
« Reply #13 on: January 18, 2008, 03:01:25 AM »
Welcome!


:)

bry

Offline Andy Velez

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Re: Hello . . .
« Reply #14 on: January 18, 2008, 09:57:45 AM »
Good to have you come in from the cold and join us, Assur. Welcome! Looking forward to hearing more from you whenever you want to drop in.

Cheers,
« Last Edit: January 18, 2008, 10:07:25 AM by Andy Velez »
Andy Velez

 


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