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#432213 - 04/23/13 08:03 PM "
lbcali1978 Offline
Member
MaleSurvivor

Registered: 02/16/12
Posts: 217
"


Edited by lbcali1978 (04/29/13 01:17 AM)
_________________________
They said

Come home

I said

I'm confused and alone

They said

We understand

I found out they don't

I'll walk the path exactly how I've always done it

Alone

Top
#432233 - 04/24/13 12:04 AM Re: My Brother- Epitome of a Survivor [Re: lbcali1978]
cuda Offline


Registered: 02/05/12
Posts: 22
Loc: TN
The best thing that you could for him and you is for both of you to attend an local HIV+ support if there is one in the area.

Accept his status and know that his meds are the most important thing for him. You and you sister need to find out what support systems are offered in your area.

Letting your family know your status can be hard.

Please contact me any time
_________________________
Fighting My Many Headed Dragon

My Story

http://www.malesurvivor.org/board/ubbthr...6817#Post426817

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#432244 - 04/24/13 01:06 AM Re: My Brother- Epitome of a Survivor [Re: lbcali1978]
Lancer Offline
Member
MaleSurvivor

Registered: 07/13/12
Posts: 901
Loc: Florida
No, it's not the death sentence it once was (20+ years poz here). And great that you and sis want to support him. I agree with Cuda - and usually do anyway - that a support group is a terrific idea.

Depending on the meds, it can be a mixed bag with side effects. lol...I quit one because I got tired of throwing up every morning! I mean, why live longer if I have to vomit watching GMA? (It would be more appropriate to vomit watching Matt Lauer anyway...don't even need meds for that). My current regime has settled down to just vivid dreams...and I can live with that.

For myself, the worst thing anyone can do is a codependent hovering, walking on eggshells: Are you okay? Did you take your meds today? How do you feel? Have you STILL throwing up? Are you getting ANY sleep? The way I leave it is that if I'm feeling lousy I'll tell you. Nor is it up to you to "fix" it. If I need help, I'll ask for it. Frankly, the best thing for me is that sometimes all I need is an ear to LISTEN. If I want suggestions, wait until I ask...like you just did in your OP.

I can't speak for your brother, but fatigue can still be an issue sometimes. People need to respect that. An hour's drive to a location for a shoot and back may wipe me out for 24 hours, although I recently accepted a long-standing invite from a friend to dinner at his home an hour from here (primarily because the new meds have upped my energy).

As for your journal entries, imo, this is Ninth Step stuff if it's even applicable. In short, do no harm.

Feel free to discuss here or PM. Just speaking for myself - you know how Lancer is on these boards - no question is out of bounds.

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#432247 - 04/24/13 01:57 AM " [Re: Lancer]
lbcali1978 Offline
Member
MaleSurvivor

Registered: 02/16/12
Posts: 217
"


Edited by lbcali1978 (04/29/13 01:17 AM)
_________________________
They said

Come home

I said

I'm confused and alone

They said

We understand

I found out they don't

I'll walk the path exactly how I've always done it

Alone

Top
#432255 - 04/24/13 07:47 AM Re: My Brother- Epitome of a Survivor [Re: lbcali1978]
Lancer Offline
Member
MaleSurvivor

Registered: 07/13/12
Posts: 901
Loc: Florida
Had a couple additional thots this morning. And these are general guidelines that have worked for me:

One is if I indicate I'm fatigued, just respect that. Don't tell me "it's not that bad." I know my body better than you do. I know when I'm fatigued. I know what to do...especially if I don't want it to get worse.

Another is IF he's open to it, yes, talk about your feelings, too. Not that you brother is necessarily like me, but it helps me to know what other people are feeling and thinking. (And it's not unlike discussing your CSA or ASA with someone who's open to discussing it). In his case, sharing your own story may be a common starting point...but only bits at a time.

Since I DO love talking about myself - lol...no shit! - one thing I've found helpful is when someone asks me to explain about HIV, how it works, what the numbers mean, etc. I'm flattered that someone is interested enuf to ask.

Finally, another personal experience, he may not be open to an HIV support group. We have one here that's AWFUL. But participation is HIS decision.

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#432257 - 04/24/13 08:18 AM " [Re: Lancer]
lbcali1978 Offline
Member
MaleSurvivor

Registered: 02/16/12
Posts: 217
"


Edited by lbcali1978 (04/29/13 01:16 AM)
_________________________
They said

Come home

I said

I'm confused and alone

They said

We understand

I found out they don't

I'll walk the path exactly how I've always done it

Alone

Top
#432261 - 04/24/13 09:12 AM Re: My Brother- Epitome of a Survivor [Re: lbcali1978]
Lancer Offline
Member
MaleSurvivor

Registered: 07/13/12
Posts: 901
Loc: Florida
Excellent question Ward.

1. I lived for years without meds because the early ones (yes, including AZT ...gawd) had serious side effects and, frankly, I felt better without 'em...numbers be damned. It was a quality of life issue.

2. For others, it was a matter of getting treatment if you didn't have insurance or jumping through hoops with a completely unsympathetic public medical bureaucracy (some docs we call "AIDS whores" still don't get it). Stress has a significant effect on the immune system (my bff will attest to that) and, again, the frustrations aren't worth it for some. From the late 80s I saw a lot of friends go downhill pretty quickly because of stress like that and still clearly remember dealing with more than one who'd be angry, sad, etc., never enjoying life. Stress isn't some nice, vague marketing lingo. It has serious, real physiological effects :
http://www.thebody.com/content/art32279.html

3. There's also the matter of cost. My current regimen, if I was to purchase it outright, would be $30,000 a year.

4. It may also depend on exactly what someone's specific HIV genome is. And resistance to HIV depends on the individual. Simply, some are more resistant than others.

5. Perhaps I'm stating the obvious, but there can be an element of denial if the person feels fine anyway.


At the risk of rambling - oh wtf - the other side is that delayed treatment may affect outcome. Ugh...my CD4 was down to 33 when I started the current regimen. I'm at 101/4.8% today <---not a typo... and, even at that level, doing relatively well. By way of anecdotal evidence shared with me the other day by a clinician, he'd had a guy in single digits who's doing okay today, despite never being able to get his CD4 above 156.

NIH guidelines make breakpoints at CD4 absolute counts of 350 and 500. CDC adds a breakpoint at <200.

To mix it up, clinicians are using CD4% as a more reliable ongoing indication of immune system health. A good explanation is here. In short, 40% is about normal, below 25% isn't.

lol...I laid a lot on you. But, aside from being a walking petri dish, I'm also a walking encyclopedia.

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#432264 - 04/24/13 09:35 AM " [Re: Lancer]
lbcali1978 Offline
Member
MaleSurvivor

Registered: 02/16/12
Posts: 217
"


Edited by lbcali1978 (04/29/13 01:16 AM)
_________________________
They said

Come home

I said

I'm confused and alone

They said

We understand

I found out they don't

I'll walk the path exactly how I've always done it

Alone

Top


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