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#423055 - 01/23/13 10:05 PM Re: HIV, CSA and New Med Study (Pharma Guinea Pig) [Re: Lancer]
Lancer Offline
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MaleSurvivor

Registered: 07/13/12
Posts: 901
Loc: Florida
As relates to the CSA - you knew this was coming - this is telling.

During the home abuse and the years following the CSA, I soldiered on. Some perhaps suspected something wasn't quite right with me, but I seemed to be functioning. The HIV is very similar. Except this is a case in which I've actually been able to quantify it.

And, well, here I go with vindication again. A couple people who aren't terribly familiar with HIV were shocked when they heard the results. I've appreciated being treated normally by them, but I've also made it clear I often feel weak. I don't think it had really sunk in. I hope they don't start treating me differently now - especially since I'm starting the advanced meds, that would be an irony.

I don't like to admit this, but I've also some resentment towards those who hadn't taken me seriously. Some of it's my doing out of a lifetime of habit, trying to look/act normal when I've felt like crap and/or only been able to function a few hours at a time. I guess in some cases I've made light of it because I don't want to deal with others' denial (i.e., "oh, you're just having a down day" or "you look phine to me"). Often, it's just to help MY frame of mind...which would be shit otherwise. If anything, I've got my own baseline, if you will, on exactly how much effort it's really required.

I mean, hell, a CD4 count below 200 plus any of a specific list of infections indicates AIDS. Well, I'm at 46 and the infections have been coming with increasing frequency over the past year, though they'd not progressed to the specific CDC-approved list, "just" related infections. I've been managing the symptoms best I can without insurance...and, honestly, no desire to invoke a public health system (been there, done that...and I'm a piece of meat to them, if I've been lucky) which would stress me out more.

That's my rant.

Suppose I should be doing a Celia Cruz thing. But after so many disappointments I'm just relieved.

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#423056 - 01/23/13 10:16 PM * [Re: Lancer]
Smalltown80sBoy Offline
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Registered: 03/25/12
Posts: 2217
*


Edited by Smalltown80sBoy (04/29/13 02:15 PM)

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#423060 - 01/23/13 10:32 PM Re: HIV, CSA and New Med Study (Pharma Guinea Pig) [Re: Lancer]
Lancer Offline
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Registered: 07/13/12
Posts: 901
Loc: Florida
Thanks Gary. I may be making a few long posts as I digest this. Having dealt with a bunch of disappointments the past 20 years on this, I haven't been willing to "Celia Cruz" (gawd, I love her) until I had some numbers...and it took two months from inquiry to acceptance. Even now, I'm not excited. Just relieved.

Any excitement is tempered by the conditions of the protocol. Meds taken same time of day, EVERY day, with food. No, "oops, I missed a day." Frequent testing will immediately indicate if I'm noncompliant, as they put it, and that's the end of it. Period. Nor do I know, though bad reactions are infrequent, how my body will react to it. If I'm worshipping at the Porcelain God every day that's gonna be a deal-killer.

However, I'm starting to consider, when/if the out-of-town church litigation begins, I might actually be able to handle it. As far as work, I might actually be able to handle longer assignments.

One thing I HAVE learned, however, is to take it at my own pace. Screw other people's expectations ("Okay, so you're 'cured' now?"). Gawd, gimme a fucking break. Ultimate irony: there are reports that as the immune system starts to work again, some actually become sick more often initially because their bodies are finally reacting to ward off infection. I'll call it Mother Nature's Mind Fuck.


Gawd, tens of thousands of dollars worth of medication and I'm posting Chiffon Margarine?


Ah, Gary, I'm sure we can find little nano-size number tags for your nose hairs. Whaddyathink?

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#423219 - 01/25/13 04:12 PM * [Re: Lancer]
Smalltown80sBoy Offline
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MaleSurvivor

Registered: 03/25/12
Posts: 2217
*


Edited by Smalltown80sBoy (04/29/13 02:17 PM)

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#423222 - 01/25/13 05:02 PM Re: HIV, CSA and New Med Study (Pharma Guinea Pig) [Re: Lancer]
Lancer Offline
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Registered: 07/13/12
Posts: 901
Loc: Florida
When/if I deal with side effects you can bet there will be a smartass video to go with it.

Checked with the DMV site. I'm pissed. The vanity tag "LAB RAT" is taken. Suggestions welcomed. Up to 7 characters plus one space.

What Are Friends For Dept.: bff, also poz, always supportive, chimed in with, "When you start feeling better, you can go out and get more STDs!" Whatta guy!

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#423368 - 01/27/13 02:47 PM Re: HIV, CSA and New Med Study (Pharma Guinea Pig) [Re: Lancer]
Lancer Offline
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Registered: 07/13/12
Posts: 901
Loc: Florida
For the first time - hey, took me two months to get here - I can actually say I'm feeling excited about the protocol. It's sinking in. It starts Tues.


Side effects? Potentially taking my cue from kitty and hairballs: "Look Daddy! I threw up!"

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#423386 - 01/27/13 05:34 PM Re: HIV, CSA and New Med Study (Pharma Guinea Pig) [Re: Lancer]
peroperic2009 Offline
Moderator
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Registered: 10/09/11
Posts: 3600
Loc: South-East Europe
Originally Posted By: Lancer
What Are Friends For Dept.: bff, also poz, always supportive, chimed in with, "When you start feeling better, you can go out and get more STDs!" Whatta guy!


He seems to be very humorous and very pozzitive guy wink
_________________________
My story

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#423488 - 01/28/13 06:55 PM Re: HIV, CSA and New Med Study (Pharma Guinea Pig) [Re: Lancer]
Lancer Offline
Member
MaleSurvivor

Registered: 07/13/12
Posts: 901
Loc: Florida
There's a Southern saying that describes him: "You jus' ain't right." A very kewl guy.

Fasting overnight, more blood letting and pissing in the morning then the meds start. I was gonna tell them to expect an emaciated body delivered by ambulance and then they could suck out the last of my bodily fluids.


NOT MY BLOOD! NOT MY BLOOD! We're the Resistance! We can go underground!
(Yeah, I know it's friggin' Cruise, but I was desperate for material)

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#423625 - 01/29/13 05:09 PM Re: HIV, CSA and New Med Study (Pharma Guinea Pig) [Re: Lancer]
Lancer Offline
Member
MaleSurvivor

Registered: 07/13/12
Posts: 901
Loc: Florida
Here 'tis...Today was Lab Rat Day! Fasting and water overnight, three cups of urine (only needed two and actually did FOUR...I'm such a race horse)

PLUS 6-8 blood vials (wasn't in the mood to count while my arm was being drained - I even watched for a while before the room started to spin - but my RN was cheerfully quoting lyrics from "The Fantasticks"...he's too much and, listening to this thing I know why I've always had an aversion to Broadway anything).


Details: Two bottles of pills (one real, one placebo), conveniently in two colors in case I spill 'em all over the floor. For now, taken in the morning with a Pop Tart or something (haven't done those in years), two hours before or after any other meds. May do additional Calcium/Vitamin D supplement as this may affect bone density.

Two more draws in the next month. Will be very interested to see how bad the fasting numbers were. The last numbers were highly entertaining! And have an official-looking card ("I'm a lab rat for a major pharmaceutical company. Handle with care"...jk) to carry in my wallet in case the Waste Management truck runs me over.



Yeah, it's been a lot the past couple months. Celebrated on the way home with a BK Whopper (w/cheese!). Haven't done THAT in years either. Then I was home and crashed for four hours...hey, I'd already slept well eight hours last nite. I think that was a good indication of the anxiety I'd had about whether I'd even get into the study. Just relieved to be on my way and feel like I might actualy do ok with all this. Haven't even thrown up yet ;-)


Edited by Lancer (02/01/13 05:16 PM)
Edit Reason: Race horse vid was GROSS

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#423641 - 01/29/13 07:53 PM Re: HIV, CSA and New Med Study (Pharma Guinea Pig) [Re: Lancer]
Lancer Offline
Member
MaleSurvivor

Registered: 07/13/12
Posts: 901
Loc: Florida
I'm gonna briefly glom on something that's been on my mind about CSA, regrets and how I got here with the HIV.

My recovery, particularly ACoA, was going very well, I had a very good rep in my industry (despite no degree in a city full of them) and a gentle giant boyfriend with a brain the size of a planet. When Dad died, it turned things upside down. I moved to be back where I felt his presence (deal with my grief)...and LDRs rarely work.

Hooked up with a poz hottie for three years - a codependent, destructive relationship - and all the sex we could handle. So, yeah, when I'm on this meds thing, my mind sometimes wanders towards what could have been with the gentle giant. Seattle and the commercial aviation industry would have been perfect for me...and, go figure, it had been one of Dad's favorite cities.

I suppose all the more reason to keep a quote from my cousin in mind he gave me Saturday: Life isn't about filling the holes, it's about living with them. There are times I really hate that saying.

Nor was it all bad. This city and environment are 100% me.

In some sense, I feel I've been given another chance to make better choices. Until now, I haven't felt as if I've had the physical energy to do it. And, after 20 years of this, I'm wondering what that will feel like. I'm starting to let myself feel excited and cautiously optimistic. When/if there are tangible changes that will bring it home.

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