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Author Topic: Surprised, Yet Not So -- Further Thoughts  (Read 4634 times)

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Offline Matty the Damned

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Surprised, Yet Not So -- Further Thoughts
« on: September 25, 2006, 12:32:11 PM »
I had my follow up appointment with the Fulcher, Immunologist to the Stars today. The details of my first visit can be found here.

As some may recall, I have developed an auto-immune condition called Henoch-Schoenlein's Purpura (HSP). Auto-immune disorders are not uncommon in people with mid-stage HIV disease such as myself, nevertheless HSP is quite rare in adults. It's almost exclusively a condition found in young children. In kids it generally resolves without treatment, in adults it's more troublesome.

The Fulcher ordered a course of prednisolone, but unfortunately it hasn't worked. The symptoms continue pretty much unabated and I have to take NSAIDS to relieve the pain. More worringly I'm still having trouble with my kidneys (deranged function, blood in my urine etc) as a result of the HSP.

On my last visit the Fulcher also took blood to check my CD4 count and my viral load. For some perspective, my August results were:

CD4 absolute: 216
CD4 %: 18
VL: n/a

As of the 15th of September, my numbers are:

CD4 absolute: 133
CD4 %: 12
VL: >550,000

This is the lowest CD4 count I can remember. Certainly the percentage is the lowest. Also it's my highest VL result.

Which makes things rather complicated. The prednisolone (which I didn't take until after these latest bloods were performed so those latest results aren't affected by the drug) suppresses immune function including CD4 activity. Since the current cortico-steroid regime isn't working, my dosages have been increased to 75mg per day.

It's something of a vicious circle. I've also been placed on Bactrim prophylaxis.

The upthrust of all this is that the Fulcher (as the ranking clinician) has taken over management of my HIV needs in addition to dealing with the HSP. I'll still see Frau Eva, but the shots will be called by his Exalted Medical Self. The Fulcher is confident that this uber steroid regime will knock the HSP out. I have to see him (or his registrar, Intelligent Asian Youth) on a two weekly basis.

The Fulcher and I had a long conversation about these things. We understand each other much better as a result.

MtD
« Last Edit: September 29, 2006, 09:44:39 PM by matty.the.damned »

Offline lydgate

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Re: Surprised, Yet Not So
« Reply #1 on: September 25, 2006, 12:59:07 PM »
Matty, what about HAART? I know you're reluctant to go on those pesky pills, but given those numbers is it time to reconsider?

Jay
Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

George Eliot, Middlemarch, final paragraph

Offline Matty the Damned

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Re: Surprised, Yet Not So
« Reply #2 on: September 25, 2006, 01:04:15 PM »
Well that's the thing really. The Fulcher and I talked about that today. Our chat was most helpful. I think I understand my issues with HAART with greater clarity than before. I just need to ruminate upon said issues for a few more hours and I think I will be able to explain myself.

MtD

Offline Teresa

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Re: Surprised, Yet Not So
« Reply #3 on: September 25, 2006, 01:11:21 PM »
Matty,

You are in my prayers. You hang in there. Sending you nothing but positive thoughts and love.

Hugs
Teresa
Hubby HIV+ 5/5/06
CD4:320
  %: 26.7
 VL: <20
Atripla (started it 8/24/06)
 

Offline Dachshund

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Re: Surprised, Yet Not So
« Reply #4 on: September 25, 2006, 01:21:08 PM »
Take care Poo :-*

Offline bobik

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Re: Surprised, Yet Not So
« Reply #5 on: September 25, 2006, 01:46:56 PM »
Dear Matty,

first thing to read after my holiday is that you're not well. Big hug from Holland, my friend!

Coen
Coen Honig at Facebook

Offline Sky

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Re: Surprised, Yet Not So
« Reply #6 on: September 25, 2006, 02:17:17 PM »
Your grace I really hope things are on the up for you, I know they haven't been the best lately.  I know HAART isn't something you've wanted to do, but really hope you consider it.  The forums needs someone to rule on high you know.
Poz since 2003.

Offline CaptCarl

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Re: Surprised, Yet Not So
« Reply #7 on: September 25, 2006, 02:26:45 PM »
Matty,
   I will hope for the best for you. I've had some pretty fucked up numbers myself over the last year. I finally began to take meds this past spring, although I'm not sure if it's HAART or not. The viral load came down quite a bit, and the T4 count went up. The big news though was the viral load for the HepB coinfection that I have, the viral load dropped DOWN TO 100,000. It had peaked at over a billion a few months before. Do your best, I'd miss not seeing your posts as I have come to look forward to them. DingoBoi would miss you as well.
The only thing I can do straight is shoot..

Offline Alain

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Re: Surprised, Yet Not So
« Reply #8 on: September 25, 2006, 02:40:54 PM »
.
« Last Edit: November 03, 2006, 09:26:20 PM by cowandalehouse »

Offline ademas

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Re: Surprised, Yet Not So
« Reply #9 on: September 25, 2006, 02:48:31 PM »
Well, damn, Matty, this isn't good.
It got my eyeballs a little wet, too--and that doesn't happen often.
What's the difference between prednisone and prednisolone?
Good thoughts your way...
xox

Offline Lis

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Re: Surprised, Yet Not So
« Reply #10 on: September 25, 2006, 04:41:50 PM »
Hang in there o great one!!! your the captain of the ship... but you can still get in the life raft..

lisbeth
poz 1986....

Offline Moffie65

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Re: Surprised, Yet Not So
« Reply #11 on: September 25, 2006, 04:42:35 PM »
Matty,

As always, you and Jaser are in my thoughts today.

I will support whatever decision you make.  Lord knows, we have all been to the mat with this disease, and knowing all you know certainly don't make it any easier, just more intense.

Please be calm, and ponder all you need.

In Love and support.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline fearless

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Re: Surprised, Yet Not So
« Reply #12 on: September 25, 2006, 07:57:03 PM »
Hey Matty,
Sorry to hear about this. I hope things get better for you and you and the doc can work something out.
Me is feeling a little road trip with Melia out to the other side of the great divide may be in order.
Steve
Be forgiving, be grateful, be optimistic

Offline otherplaces

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Re: Surprised, Yet Not So
« Reply #13 on: September 26, 2006, 12:12:51 AM »

Matty,

You're in my thoughts!  I hope the immunologist to the stars gets things under control for you.

much love,
brian


Offline Eldon

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Re: Surprised, Yet Not So
« Reply #14 on: September 26, 2006, 12:26:02 AM »
Hey Matty,

It does disturb me to hear that you are caught up in a vicious cycle. Please DO your BEST to handle the situation in a rational manner and DO your BEST to get through this to recover back to your normal self.


Sending BEST wishes to you my friend.

Offline sweetasmeli

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Re: Surprised, Yet Not So
« Reply #15 on: September 26, 2006, 01:25:14 AM »
Sweetie, I'm on my way with chicken soup, ouzo and lashings of TLC...

Melia :-*
(who thinks a visit to the Blue Mountains may be in order during her trip...)
/\___/\       /\__/\
(=' . '=)    (=' . '=)
(,,,_ ,,,)/   (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

Yeia kai hara (health and happiness) to everyone!

Offline cubbybear

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Re: Surprised, Yet Not So
« Reply #16 on: September 26, 2006, 03:54:00 AM »
Matty babe, baby bear.. i'll never be one to lecture you to take haart.. but what the fuck.  Just take those god damned awful meds you son of a gun, your numbers are damn well worse than mine now!  I used to want to borrow your CD4s but now you'll be needing some of mine.  Do what ever it is you need to do babe, I just want you well for when I get my arse to Sydney.  Get better woofy.

xx
There's a bear in there!
Positive since 2000
Diagnosed 17/9/2005 CD4 35 VL 293,000
Meds 23/9/2005 Sustiva/Truvada
Currently CD4 232 VL Undetectable

Offline aztecan

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Re: Surprised, Yet Not So
« Reply #17 on: September 26, 2006, 09:47:23 AM »
Matty,

Hmmm, well, damn.

Do please think about starting a regimen soon. I will, of course, respect any decision you make, but you already know where my feelings lie in this matter.

I hope your new uberdoctor works out for you and you beat this new problem post haste.

If I could, I would send you some CD4s just for good measure.

Since I can't, I will be keeping you in my thoughts and sending positive energy your way, whether you believe in it or not.

HUGS,

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

Offline Iggy

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Re: Surprised, Yet Not So
« Reply #18 on: September 26, 2006, 10:17:04 AM »
.
« Last Edit: January 12, 2007, 08:53:25 PM by Iggy »

Offline newt

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Re: Surprised, Yet Not So
« Reply #19 on: September 27, 2006, 03:52:39 PM »
Bloody hell mr matt, 1 day of 7.5mg of Predniso has got me rabbitting like a broken radio, even talking out loud to myself, so roo knows where your head is...but I reckon you got the spunk & experience to handle it (I hope sincerely, or else it's Waltzing Matilda + the straight-jacket, so to speak).  Anyway, the immunologist sounds miles better than the frau, hope he's the business class exp., it's important to have a doc who understands where you's coming from and the decisions you make, n treats you in that context.  Hope yng assistant can keep up. 2 glasses of wine, as per what my mother used to do, does calm down the shaggy dog talking I find...

Take care

- matt

Now playing: glass of wine #2, pasta water I guess on the halogen hob, cos I been typing, dead cat in the fridge
« Last Edit: September 27, 2006, 05:47:55 PM by newt »
"The object is to be a well patient, not a good patient"

Offline ACinKC

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Re: Surprised, Yet Not So
« Reply #20 on: September 27, 2006, 04:05:13 PM »
Matty,

Positive thoughts from my head to yours!  Get better man.
LIFE is not a race to the grave with the intention of arriving safely
in a pretty and well-preserved body, but, rather to skid in broadside,
thoroughly used up, totally worn out, and loudly proclaiming--WOW! WHAT A
RIDE!!!

Online Andy Velez

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Re: Surprised, Yet Not So
« Reply #21 on: September 27, 2006, 05:04:13 PM »
Matty, I'm glad you have a doctor who's paying serious, skilled attention and with whom it sounds like you can have a meeting of the minds. (Try not to scare him...too much, ok?)

Fingers crossed for you.

Andy Velez

Offline allopathicholistic

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Re: Surprised, Yet Not So
« Reply #22 on: September 27, 2006, 06:57:52 PM »
MtD

We're in your corner ~ We will help you kick ass! (or arse!)

Offline Matty the Damned

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Re: Surprised, Yet Not So
« Reply #23 on: September 29, 2006, 09:44:08 PM »
I was going to update this sooner, but I wanted to wait for a couple of days to see if the increased dose of prednisolone would work.

It works. Oh lordy does it work. I've been as buzzy as hell. My little heart is pounding and I have the agitated strength of 10 skittish drag queens after the meth dealer has paid a visit. The vasculitis is fading rapidly and no new lesions are appearing. I still get attacks of arthritis, but this can take some months to go away. Also the dull ache in my back (presumably my long suffering kidneys) has gone and my wee is back to normal.

There, that should satisfy the WS freaks amongst you. Matty the Damned has talked about his wee. This could be good. There are a number of you that I've wanted to piss on from a great height for a while now. ;)

I'm worried, however, that the HSP will recurr when I stop taking the prednisolone. Long term use of cortico-steroids is just not a possibility for HIV positive people. But things will be as they will be.

When I spoke to The Fulcher last, we talked at length about HAART, especially in the context of the prednisolone. He was quite clear. It's gonna total my immune system. He predicts that in the next couple of weeks my CD4 count will drop to about 40 or 50. Starting HAART will address this, but it seems that it's going to be a while before I see any significant improvement in my immune function. Which brings me to . . . .

Matty the Damned and his issues with HAART

To many (myself included) it has been a source of puzzlement why I have such a problem with taking anti-retrovirals. It's not just side effects. I experienced those when I took HAART a couple of years back and whilst unpleasant, they weren't intolerable.

I mean dealing with Worried Wells is much worse than anything efavirenz or ritonavir can dish out.

I've worked out that this is about informed consent and I don't just mean agreeing to take pills or treatment. It's about me being able to commit to a course of treatment and see it through. Somewhere deep inside there's a bit of me that just doesn't want to take the medications.

And, no, I don't know why. If I did, I'd have dealt with it.

But I do know that until I can resolve the internal conflict that I have over this I cannot, in all conscience, agree to take medications that require the discpline HARRT does. So we just have to see. I know there are people who will think this is stupid self indulgent behaviour. Especially from someone who lives in a country with socialised medical care.

People like Morton Salt and JeffreyJ who think we should all just "suck it up" and take the damn pills with gratitiude and an unnecessarily cheerful American attitude. Well it must be nice to have such a simple view of the world. Alas I don't and I have to make do with what I have.

Regards,

MtD

Offline Teresa

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Re: Surprised, Yet Not So -- Further Thoughts
« Reply #24 on: September 29, 2006, 10:21:51 PM »
Matty,

I'm glad your wee is back to normal and no new lesions have appeared.

Sending positive thoughts and prayers to you!

Big Hugs
Teresa

Hubby HIV+ 5/5/06
CD4:320
  %: 26.7
 VL: <20
Atripla (started it 8/24/06)
 

Offline otherplaces

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Re: Surprised, Yet Not So -- Further Thoughts
« Reply #25 on: September 29, 2006, 11:13:57 PM »

Matty,

My feelings are why not give HAART another shot and just see if it makes you feel better.  But that's just my feelings.  You know I respect you, and I know you know all the arguments.  I, of course, respect your feelings.

I never thought of my 'oh well, time for meds' attitude to be so 'merican.  Just an extension of learning to deal with alot of things I hoped I'd never have to deal with.  But I guess I've lived all up and down the middle of this country, and while I often feel I'd like to experience living in another country...maybe I'm still just bred through and through with that 'Can do' spirit.  :-\

Still thinking about you.

much love,
brian


Offline bocker3

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Re: Surprised, Yet Not So -- Further Thoughts
« Reply #26 on: September 29, 2006, 11:27:18 PM »
Hi Matty,

I've never introduced myself to you, but I've been reading your posts for months now.  I can't imagine how your internal struggle over HAART must exhaust you.  I've always subscribed to "better living through chemistry", so while starting my meds last December was scary, I never thought about not doing so...  I've been popping statins since 1998 -- long before testing poz in 2005, so perhaps my "habit" was ingrained.  I'm not sure if my complete willingness to do this is part of my "Americanized" self -- or due to my medical background.  However, I do know, that if I was not sure I was going to take them and stick with them, I probably would be in the same space as you.
Obviously, Matty needs to decide if and when he will take them -- unfortunately your virus is telling you that the decision time is very near now.  I'll be thinking of you and hoping you can figure it all out -- I think there are a number of people here that need you to stick around and share your special brand of wisdom.  You've made me stop and think many times -- I probably have more thinking that needs to happen, so I hope you can continue helping me (even the "occasionally ornery" Matty has been helpful -- maybe even especially this one).  Hang tough, breath deeply and see if you can't get to the bottom of things.
I know that HAART saves lives, but it seems likely that if you can't commit to taking it consistently, you waiting to start makes sense.  PLEASE don't take too long though.   :-*
Hugs
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline JohnOso

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Re: Surprised, Yet Not So -- Further Thoughts
« Reply #27 on: September 30, 2006, 05:45:41 AM »
Matty,

I'll be quick:   thinking of you...hoping things turn around for you.

I'm understanding a bit better where you're coming from.

Take care,
John

Offline lydgate

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Re: Surprised, Yet Not So -- Further Thoughts
« Reply #28 on: September 30, 2006, 10:30:09 AM »
I don't think it's stupid or self-indulgent. But, conscience be damned Matty, I don't want you to end up, unexpectedly, in a body bag -- while your mind takes its sweet little time figuring out out what its issues with HAART are. And you know as well as I do that once those numbers start dipping below 40, the body bag scenario is not farfetched; it's a crapshoot from then on, or simply a matter of time.

So FUCK all the "I respect your decision, whatever it is" stuff. Take the damn pills already.

Jay
(who is not American)
Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

George Eliot, Middlemarch, final paragraph

Offline gemini20

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Re: Surprised, Yet Not So -- Further Thoughts
« Reply #29 on: September 30, 2006, 11:20:31 AM »
Matty,

Its so helpful to read that I am not the only one who has issues with HAART. Like you I have given some thought as to why I choose not to be on meds despite numbers that would warrant it. My lack of compliance the last time I tried was part of the problem but more so it's that I personally see going onto treatment as somehow 'failing' - and I'm not a person who likes to fail. I can't even explain what I think I am 'failing' at but that's the feeling I come up with everytime I give any thought to treatment.

Thankfully I am not having to deal with the sort of stuff you're going through right now but I can understand completely where you are coming from.

best wishes,

Emma







Diagnosed 11th September 1991
Current CD4 count 484 (26%); viral load undetectable (December 2011).
Restarting boosted Prezista 08/04/11

Offline Matty the Damned

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Re: Surprised, Yet Not So -- Further Thoughts
« Reply #30 on: September 30, 2006, 11:33:36 AM »
So FUCK all the "I respect your decision, whatever it is" stuff. Take the damn pills already.

Oh Jay! I didn't want to have to say this to you, but it's about time that you:


I'm just sayin' what would you know about this stuff?

MtD

Offline Matty the Damned

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Re: Surprised, Yet Not So -- Further Thoughts
« Reply #31 on: September 30, 2006, 11:36:23 AM »
Matty,

Its so helpful to read that I am not the only one who has issues with HAART. Like you I have given some thought as to why I choose not to be on meds despite numbers that would warrant it. My lack of compliance the last time I tried was part of the problem but more so it's that I personally see going onto treatment as somehow 'failing' - and I'm not a person who likes to fail. I can't even explain what I think I am 'failing' at but that's the feeling I come up with everytime I give any thought to treatment.

Thankfully I am not having to deal with the sort of stuff you're going through right now but I can understand completely where you are coming from.

best wishes,

Emma


Emma,

Your support through this has been greatly appreciated. It comes with no judgement and great degree of love and empathy. Matty the Damned responds to that.

He hopes that others might learn from your example.

:-*
MtD

Offline Life

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Re: Surprised, Yet Not So -- Further Thoughts
« Reply #32 on: September 30, 2006, 11:49:02 AM »
Matty - I am sure the piss is flying my way.. :)

Hope the docs can make you well...


Offline dad1216

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Re: Surprised, Yet Not So -- Further Thoughts
« Reply #33 on: September 30, 2006, 12:10:59 PM »
I am a "newbie" to this decision and finding someone that understands is difficult.
I for one am grateful for Matty and Emma.
They truly understand.
23 years HIV+ (Oct 88)
11 years AIDS (March 00)

CD4=83  VL=47,000  (May 2011)
CD4=63  VL=78,470  (Oct 2010)
Prezista..Norvir..Truvada

Offline lydgate

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Re: Surprised, Yet Not So -- Further Thoughts
« Reply #34 on: September 30, 2006, 12:32:24 PM »
You're right, it's not my business. My feeble attempt at 'tough love'. Apologies duly tendered.

Jay
(who's into watersports)
Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

George Eliot, Middlemarch, final paragraph

Offline Razorbill

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Re: Surprised, Yet Not So -- Further Thoughts
« Reply #35 on: September 30, 2006, 12:53:06 PM »
Matty,
   You ultimately decide your fate.  With your numbers I'd say your days are numbered, just like your tcells - lol.  Anyway, good luck and we'll miss you when your gone.  xoxo

Razorbill

PS = Razorbill is seemingly facetious, but I think the bottom line is unambiguously clear.

Offline Longislander

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Re: Surprised, Yet Not So -- Further Thoughts
« Reply #36 on: September 30, 2006, 03:24:21 PM »
Matty,
When I read  your post about your issues with HAART yesterday, it made me cry. Maybe as much for you as me. I had seen a few people die from AIDS when I was younger. They were friends of my 1st lover (who was older than me ). Since the last ,in 1999, I know of no one who has died (small circle, only know OF people with HIV/AIDS at this point). A few weeks ago I was at the point of having to make the decision to start meds. I didn't want to, hell I can't even keep my ONE_A_DAY str8! But I knew if I was to start , I HAD to make it work.
You have other health issues to deal with, and I'm definitely no expert,  but I would think that you would do whatever was necessary to keep yourself alive and as well as you can be, unless you don't want to stay alive. Perhaps you need to talk to someone who can help you figure this out.

I'm a relative newbie at this, and I'd hate to already be missing someone from this site. I spend way too many hours here, taking little barbs from you (which make me laugh), learning how to deal with this, and admiring you all for what you do here.

I know it's none of my business, nor anyone else's, but I wanted to say how I feel. Please figure this out, take the meds if that's what you have to do, and stick around so you can continue to help others like me learn, deal, and laugh sometimes.

Paul

p.s. Go ahead, blast me if you must! lol
« Last Edit: September 30, 2006, 03:26:53 PM by Longislander »
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline Alain

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Re: Surprised, Yet Not So -- Further Thoughts
« Reply #37 on: September 30, 2006, 04:07:10 PM »
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« Last Edit: November 03, 2006, 09:21:26 PM by cowandalehouse »

Offline Miss Philicia

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Re: Surprised, Yet Not So -- Further Thoughts
« Reply #38 on: September 30, 2006, 04:27:34 PM »
Have you tried cognitive behavioral therapy about your aversion to HAART?  You seem OK about tolerating the side effects so it doesn't sound like a physical issue.. decidedly mental.  Personally I can't relate to the HAART aversion as someone who has faithfully adhered to HAART for almost 15 years, but I can identify with the potential cognitive thing in terms of other issues I've had.  Basically the behavior isn't going to be changed with any psychotropic medication but only with behavioral therapy.

Good Luck
"Iíve slept with enough men to know that Iím not gay"

 


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