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Author Topic: sometimes, i have to be told  (Read 1773 times)

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Offline zach

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sometimes, i have to be told
« on: May 22, 2014, 11:19:33 AM »
or i don't know when to stop.

power day yesterday, won a big fight, needed it repeated a couple times for clarity before i'd stop hitting back

checked off these marks on lifelist

deemed medically disabled
approved social security disability benefits, beginning oct 15
approved supplemental security benefits, beginning june 1
medicaid is in process, i may just be waiting on a card
adap is in process, meds will not be interrupted in meantime

tired, just want to go garden
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline Jeff G

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Re: sometimes, i have to be told
« Reply #1 on: May 22, 2014, 11:36:15 AM »
That's a lot of progress Zack ... it must be the hat .

Gardening makes all things better except for my sore back .

Offline absopozilutely

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Re: sometimes, i have to be told
« Reply #2 on: May 23, 2014, 03:04:37 AM »
Yay! Good for you Zach! Now the road to healing is in place!

-Abso
12/18 Infected
2/4 12:22pm tested POZ via ORAquick
2/19 WB Confirmation
2/4-2/19 VL 104,678 CD4 407
3/2 Genotype back, and Started Complera
4/2-CD4 688 38% and VL 1,600
5/1-CD4 592 42% and VL 336
5/22-CD4 732 31% and VL 109 :( STILL NOT UD!
5/31 Switched to Stribild :( I'll miss you Complera!
6/19 CD4 508 35% and VL UD!!!!! Crying at work like a baby.

Offline Jmarksto

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Re: sometimes, i have to be told
« Reply #3 on: May 25, 2014, 11:22:55 AM »
I am glad to hear things are looking up for you Zach -- you have been through the ringer, pretty much kept your head up through it, and deserve some good news  Here is to continued good news for you!
03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45%  VL 25
02/25/14 CD4   792/37%  VL UD
07/09/14 CD4 1004/39%   VL UD

Online Dan0

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Re: sometimes, i have to be told
« Reply #4 on: May 25, 2014, 11:26:45 AM »
I've read your posts from start to finish (and the pics didn't hurt either) and what a transformation! A success story! We all have differing opinions of what constitutes success.....but IMO you're it! Congrats!!
You can be the ripest, juiciest peach in the world, and there's still going to be somebody who hates peaches.

"Honey, you should never ask advice from a drunk drag queen who has a show to do." - JG

06/2002 DX
10/2006 Atripla UD
10/2013 Stribild Still UD

Offline zach

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Re: sometimes, i have to be told
« Reply #5 on: May 25, 2014, 09:14:04 PM »
wouldn't call it much of a success story. i have made some huge mistakes to put me where i'm at. much of the past year has just been a salvage operation.
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline BT65

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Re: sometimes, i have to be told
« Reply #6 on: May 26, 2014, 07:02:43 AM »
I know I've had to learn from many, many "lessons," to get where I am today.  But, that's what it took, so it wasn't wasted.

Keep your head up, and keep going forward. 

Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline wolfter

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Re: sometimes, i have to be told
« Reply #7 on: May 26, 2014, 07:28:20 AM »
Glad all the waiting is over so you can concentrate on getting well.  IMO, anyone who battles back from the living dead is a success.   ;D
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline intaglio

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Re: sometimes, i have to be told
« Reply #8 on: May 27, 2014, 10:55:37 PM »
Congratulations.

Is the October 15 from 2013? If so, that means you will get retroactive payments of SSDI.

You should also get Medicare coverage 24 months after your date of disability. If October 2013 was your date of disability, that means you are eligible come October 2015.
Reality is frequently inaccurate.

Offline zach

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Re: sometimes, i have to be told
« Reply #9 on: June 09, 2014, 03:55:18 PM »
Once more unto the breach

medicaid says, i am not approved to take HIV meds

two trips into the clinic, thought it was supposed to have been resolved friday afternoon. no pick up today. last meds wednesday

the pharmacist had my meds in his hand, standing behind a plexi window.

the baseball bat could have been a solution, i bet it would have worked
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline thunter34

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  • His name is Carl.
Re: sometimes, i have to be told
« Reply #10 on: June 09, 2014, 04:32:06 PM »
or i don't know when to stop.

power day yesterday, won a big fight, needed it repeated a couple times for clarity before i'd stop hitting back

checked off these marks on lifelist

deemed medically disabled
approved social security disability benefits, beginning oct 15
approved supplemental security benefits, beginning june 1
medicaid is in process, i may just be waiting on a card
adap is in process, meds will not be interrupted in meantime

tired, just want to go garden

That's my buddy right there, y'all.

the pharmacist had my meds in his hand, standing behind a plexi window.

the baseball bat could have been a solution, i bet it would have worked

Yeah, but only until somewhere near Ponce and Peachtree.  Pretty sure at least one of the cops could pull away from the nearby crack patrol to catch up with you fairly quickly
AIDS isn't for sissies.

Offline zach

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Re: sometimes, i have to be told
« Reply #11 on: June 09, 2014, 04:50:14 PM »
https://www.youtube.com/watch?v=R0kX7T_eaNc

i can just see my getaway now. dropping down north, floor it to manuels for a beer, a bag full of meds, and a blunt dangling from my grinning mug, hanging out the window flipping a bird to every cop on the way
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline mitch777

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Re: sometimes, i have to be told
« Reply #12 on: June 09, 2014, 05:00:53 PM »
Once more unto the breach

medicaid says, i am not approved to take HIV meds

two trips into the clinic, thought it was supposed to have been resolved friday afternoon. no pick up today. last meds wednesday


Wut? Grrr...
31 years hiv+ (oct. 2013) with a curtsy.

Offline Jeff G

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Re: sometimes, i have to be told
« Reply #13 on: June 09, 2014, 05:03:10 PM »
A friend of mine once told a scrawny cop that you don't want none of me Barney ... apparently Barney did want a little of him because withing seconds he was picking gravel from his driveway out of his forehead . I crack up every time I think of that night ... him, not so much . 

And ... is it a glitch or what ? are you going to get your meds ?

Offline zach

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Re: sometimes, i have to be told
« Reply #14 on: June 09, 2014, 05:21:59 PM »
dunno man. medicaid just coming online for me, so i expected some bumps in the road. what i heard last week was everything was clear to go, ready for pickup at 3pm last friday. really thought it was resolved then.

my blood pressure is so damn low i could use the irritation in my life.
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline BT65

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Re: sometimes, i have to be told
« Reply #15 on: June 09, 2014, 05:28:58 PM »
I can't remember, (sorry, major brain fog), are you in contact with an ASO?  If so, why not call them and let them fight it out for you.  I hate dealing with benefits, especially when they first start, or you have to change something.  Good luck, Zach. I hope it gets straightened out very soon.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline zach

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Re: sometimes, i have to be told
« Reply #16 on: June 09, 2014, 05:37:29 PM »
yeah, the clinic is an aso. there's a guy, i'm confident things will be ok. i'm not gonna tweak until thurs at noon
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline Jeff G

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Re: sometimes, i have to be told
« Reply #17 on: June 09, 2014, 06:10:00 PM »
What meds are you on again so we can maybe find you enough to get by if need be .

Offline thunter34

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Re: sometimes, i have to be told
« Reply #18 on: June 09, 2014, 06:44:26 PM »
What meds are you on again so we can maybe find you enough to get by if need be .

He is on my combo, and while I am going to be running out soon myself, I still have about 2 weeks' worth and probably spot him a couple of days.  Meds were sent to me from various sources when I reached a pill pickle and I ended up with uneven supplies of the combo.  I have a full bottle of Truvada at the ready, so he'd need the Prezista and the Norvir.

AIDS isn't for sissies.

Offline Jeff G

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Re: sometimes, i have to be told
« Reply #19 on: June 09, 2014, 06:46:10 PM »
He is on my combo, and while I am going to be running out soon myself, I still have about 2 weeks' worth and probably spot him a couple of days.  Meds were sent to me from various sources when I reached a pill pickle and I ended up with uneven supplies of the combo.  I have a full bottle of Truvada at the ready, so he'd need the Prezista and the Norvir.



Thanks Tim ... hope it gets sorted out .

Offline zach

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Re: sometimes, i have to be told
« Reply #20 on: June 09, 2014, 09:15:19 PM »
 :) thanks guys, but its not coming to all that, bottom line, what i'm really bitching about is a wasted trip into the city
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline zach

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Re: sometimes, i have to be told
« Reply #21 on: June 11, 2014, 03:16:10 PM »
ok, i'm down to not having approval for isentress

i will of course be speaking to my doctor asap, in the meantime just thinking out loud

is it a required part of my combo? it's an II, can it simply be swapped with tivicay, probably doesn't work that way does it?

what are my options here? i'm not freaking, just looking at worst case scenarios
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline zach

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Re: sometimes, i have to be told
« Reply #22 on: June 11, 2014, 04:12:04 PM »
isn't there some old saying about trying to find reason in insanity, is insane itself?

waiting on approval for one med. however, they won't actually give me any of the meds, until they have approval for all of them. that makes no sense to me.

so, if anyone has spares, i am asking for help. pretty please

i am on truvada, prezista, norvir, isentress

i'll be out tomorrow. i have isentress in hand, and i think i've got solid offers on truvada. so right now i think what need is prezista and norvir.

whichever of those meds you have, and are willing, i'm shooting for a 7-14 day supply

i would be more than happy to pay shipping, how ever you want to work it out


gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline zach

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Re: sometimes, i have to be told
« Reply #23 on: June 11, 2014, 07:58:25 PM »
you guys are gonna make me cry and stuff

thank you

gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline Jeff G

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Re: sometimes, i have to be told
« Reply #24 on: June 11, 2014, 08:09:43 PM »
you guys are gonna make me cry and stuff

thank you



Did you get what you need Zack ?

Offline pittman

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Re: sometimes, i have to be told
« Reply #25 on: June 11, 2014, 08:35:47 PM »
Sorry, Atripla I could help with, but not those.  Hope you have some luck getting them.

Offline zach

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Re: sometimes, i have to be told
« Reply #26 on: June 11, 2014, 08:56:33 PM »
Did you get what you need Zack ?

tentatively, it looks like it yes... confirmed on truvada and isentress, pretty sure on norvir and at least a couple weeks of prezista. time enough to sort my issues out.

so the immediate problem is apparently solved

moving forward, i just have to figure out what the problem is, and i can't get an answer that makes sense to me. norman coordinate
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Online Dan0

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Re: sometimes, i have to be told
« Reply #27 on: June 11, 2014, 08:57:06 PM »
I have some (old) sustiva and truvada. Probably two weeks but they're old.
You can be the ripest, juiciest peach in the world, and there's still going to be somebody who hates peaches.

"Honey, you should never ask advice from a drunk drag queen who has a show to do." - JG

06/2002 DX
10/2006 Atripla UD
10/2013 Stribild Still UD

Offline Jeff G

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Re: sometimes, i have to be told
« Reply #28 on: June 11, 2014, 08:58:51 PM »
I only have Atripla as spare and its a few years old . Fingers crossed it all comes through .

Offline BT65

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Re: sometimes, i have to be told
« Reply #29 on: June 12, 2014, 05:38:42 AM »
moving forward, i just have to figure out what the problem is, and i can't get an answer that makes sense to me.

I would make an appointment with the case manager, or just walk in, and refuse to leave until I understood what was going on.  You need and have the right to know.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline zach

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Re: sometimes, i have to be told
« Reply #30 on: June 12, 2014, 06:20:13 AM »
a situation that started alot like this, innocent enough, is what lead to me leaving last time
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline BT65

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Re: sometimes, i have to be told
« Reply #31 on: June 12, 2014, 06:28:15 AM »
Well then don't let it happen again (I mean this with love).
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Jeff G

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Re: sometimes, i have to be told
« Reply #32 on: June 12, 2014, 07:41:27 AM »
a situation that started alot like this, innocent enough, is what lead to me leaving last time

Be strong man ... I hope you are in a better place to handle this stress now . I don't know whats going on over there in Georga ... The clinic at UAB would never allow a person to go without meds in a situation like yours ... I'm not state bashing but it just pisses me off you are being put thorough this, especially since you trying to regain your health  .

Offline Miss Philicia

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Re: sometimes, i have to be told
« Reply #33 on: June 12, 2014, 08:01:05 AM »
I'll state bash -- it's ridiculous. Here we can get someone on meds IMMEDIATELY. If a case manager know they will qualify for ADAP there is a mechanism for a one-month emergency supply form while the actual application is being processed.

There should be a Ryan White Planning Council for metro Atlanta that you could locate and lodge some sort of "consumer" complaint after the dust settles.
"Iíve slept with enough men to know that Iím not gay"

Offline zach

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Re: sometimes, i have to be told
« Reply #34 on: June 12, 2014, 04:42:41 PM »
this sounds strange, but i was really kind of pissed in the hospital when they started me on ARVs without me knowing. my intention had been to wait at least a week, so that i would have a stock for times like this

and i'll lead ms p's charge and bash my home state. here in georgia, we're supposed to die, and please just hurry up about it

so how many days can i go off med before its really an issue
gonna go up to the mountain, for to find a little peace
looking over the valley, for the beauty i see
out across the hills, forevermore

Offline Jeff G

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Re: sometimes, i have to be told
« Reply #35 on: June 12, 2014, 06:14:43 PM »
this sounds strange, but i was really kind of pissed in the hospital when they started me on ARVs without me knowing. my intention had been to wait at least a week, so that i would have a stock for times like this

and i'll lead ms p's charge and bash my home state. here in georgia, we're supposed to die, and please just hurry up about it

so how many days can i go off med before its really an issue

I am sitting in my living room in a full on rant in front of company talking about what you are going through ... this shit has been my life and experience for 30 fucking years and it enrages me to no end .

You most likely will be OK one way or the other but Im not going to lie to you ... this is not good at all at this point in your treatment . The best you can do now is get back on meds and make sure this never happens again .

Offline bmancanfly

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Re: sometimes, i have to be told
« Reply #36 on: June 13, 2014, 10:33:37 AM »
Sorry for the predicament that you are in.

Is there a reason you are on that particular combo (resistance issues,  psyche issues?) 

Meds can be found,  just not the particular combo that you are on.  Some kind of effect treatment is better than none - with your doctors blessing.
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

 


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