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Author Topic: Apologies  (Read 2882 times)

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Offline WildcatCC

  • Member
  • Posts: 91
Apologies
« on: October 26, 2009, 04:06:40 PM »
I didn't realize I was not supposed to pose questions to LTSers. My apologies for past postings. I'll stick to LivingWith post.
« Last Edit: October 26, 2009, 04:32:06 PM by WildcatCC »
Apr  08 - Diagnosed
Apr  08  cd4 8, vl 150k
Meds: Prezista/Norvir/Truvada
June 08 cd4 250, vl 1600
Aug  08 cd4 275, vl 450
Meds: Atripla
Nov  08  cd4  386, vl 255
Jan   09  cd4  415, vl 2100 (spike?)
Feb   09  cd4 460, vl 212
May   09  cd4 515, vl 1200
Aug   09  cd4 717, vl 1535 % 23
Sept  09  cd4 535  vl 1710 % 18
Oct   09  genotype shows mutation. Discussing w/ ID Doc
Nov  09   cd4 480  vl 650   % 19
Dec  09 genotype slight mutation to Epivir and Retrovir
Jan 10   cd4 508 vl 250 (21%)  low vitamin d - on supplement 2000 iu/day
Mar 15 Change to Isentress and Truvada
May 5 cd4 498 vl 1485
June 16 cd4 550 vl undect!!!! (finally dammit)

Offline MWCLTonline

  • Member
  • Posts: 33
    • Windows Live Spaces - MWCLTonline
Re: Apologies
« Reply #1 on: October 28, 2009, 01:49:59 PM »
I didn't realize I was not supposed to pose questions to LTSers. My apologies for past postings. I'll stick to LivingWith post.

Dude!
Granted, I'm new to the forums; but I can't for the life of me imagine what you could've asked that provoked a reply you interpreted as LTSers infalability and aloofness...  :o  What the hell have we survived so long for if not to blaze the trail and be there to help guide you on your Journey!?   ;)

At 54, I'm Living with AIDS -600+ TCells, Undetectable Viral Load; lymphadnopathy, hypertension, lipidemia, depression, 12 scripts, Living Trust, Will, Living Will, a planned Memorial service and paid-up Burial insurance.  My ID Doc says I'm not gonna die from it anytime soon, am fairly certain I couldn't get a job in this market if I had to and it works for me   Hope this helps!

Perhaps you should check out POZ Mentor:
http://mentor.poz.com/cgi-bin/pozment.pl?UI=xEoBmC2TBPM1256751579&linkto=view_my_profile
Michael :)
"HIV is something you live with every day for the rest of your life. You may never die of it, but you always die with it..."
http://mwcltonline.spaces.live.com/
"HIV is something you live with every day for the rest of your life. You may never die of It, but you will always die with it..."

Offline sharkdiver

  • Member
  • Posts: 1,350
Re: Apologies
« Reply #2 on: October 28, 2009, 01:54:49 PM »
There has been much discussion about non-LTS's posting in this forum. It is pretty much agreed that if it is for LTS'ers.  PM's and postings in other forums about issues is fine.

Thanks,
the Shark

Online weasel

  • Member
  • Posts: 1,666
Re: Apologies
« Reply #3 on: October 28, 2009, 08:15:47 PM »
Hey WildCat  :)

 SOME   folks here seem to think "NEWBEES "   have nothing to offer  :o

   I disagree   BIG time !


 But it  Does give   some old women something to complain about  ROTFLMLAO !!!!!!!!!!


                                        Be Well , Be Happy !

             Don't let the old Geezers get to you !

                             just me ,
                                             Carl
" Live and let Live "

Offline Joe K

  • Global Moderator
  • Member
  • Posts: 3,599
  • 31 Years Poz
Re: Apologies
« Reply #4 on: October 28, 2009, 10:52:53 PM »
With all due respect, this forum was specifically set up for LTS, as a direct result of our members asking for it.  There are other forums where non-LTS can post and it is considered common courtesy to refrain from posting here, unless you are a LTSer.  I don't appreciate the comments as if we did something wrong here, by protecting our own forum.  Just because you don't feel a need for this forum, does not allow you to disrespect it.

Wildcat, no damage done.

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,903
Re: Apologies
« Reply #5 on: October 29, 2009, 05:43:16 AM »
Hey WildCat  :)

 SOME   folks here seem to think "NEWBEES "   have nothing to offer  :o
   I disagree   BIG time !
 But it  Does give   some old women something to complain about  ROTFLMLAO !!!!!!!!!!
             Don't let the old Geezers get to you !

                             just me ,
                                             Carl

These remarks are not becoming us LTSer's at all.  I totally agree with Killfoile.  This was set up as a safe place for us LTSer's to talk about things and get our peers opinions and help.  No one said we are keeping it among "just" LTSer's because we don't value newcomers.  We need our own space.  And that's not too much to ask.      Oh, and by the way, I am an older woman with Aids, and I take great offense to your remark about "some old women."  Totally uncalled for.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline leatherman

  • Member
  • Posts: 6,121
  • Google and HIV meds are Your Friends
Re: Apologies
« Reply #6 on: October 29, 2009, 10:31:23 AM »
SOME   folks here seem to think "NEWBEES "   have nothing to offer
that is not the case at all. There's a whole forum of other threads that "Newbies" contribute to daily and constantly. Wildcat's original post had to do with his concerns about KS lesions and as such should have been posted in the "living with" or even "treatments and side effects" forums, as it had nothing to do with having lived with AIDS for many years (which is more what this section is about).

The whole reason for this forum is that the experience that someone has from being diagnosed within the last 5 yrs (just as as approx date) with HIV or AIDS is a seriously different experience from someone diagnosed with HIV or AIDS say 15 to 20 years ago. (heck for that matter someone diagnosed as HIV+ is having a totally different experience from someone who is diagnosed with AIDS. ;) )

Someone diagnosed today and started on Atripla will never have the same issues as someone who was taking AZT mono-therapy every 4 hrs back in the early 90s. Someone diagnosed a year ago will never have to take 32 pills a day. Someone diagnosed three years ago hasn't suffered through all their friends dying around them by an unknown un-named disease with no medications to combat it. Someone diagnosed five years ago doesn't know what it's like to have developed resistance to the handful of the only drugs available and isn't sitting around slowly dying until a new drug comes to market.

When many LTSs found out they were positive in the late 80s to late 90s, most of us found out because we were in a hospital with an OI and had a huge viral load. There weren't many meds and the prognosis was always death! And for many of us that survived those days, we exited the hospital to find many of our friends and partners weren't so lucky and had passed away. Then we spent many years, going through various meds as the forumulas and products changed, suffering through various illnesses and conditions because of our damaged and never-quite-healed immune systems. Instead of being upset that you haven't had AIDS for 15 or 20 years and had those problems, be thankful that this is a time when more is known about HIV, there is an array of meds available with better dosing, and that HIV has even gotten to a point where people talk about it being "chronic" and "manageable".

sheesh. Nobody has ever said that "newbies" don't have anything to offer. But in the same way that females have some different problems and issues than males and hence the Women's Forum, people who were diagnosed many years ago (and perhaps been on the earlier treatments) have some different issues and problems. The LTS forum isn't just about surviving with AIDS for a long time; it's about people who had a completely different experience and treatment regimen with this illness. (ie a person diagnosed in 2003, even in another fifteen years from now, will never have the same issues as an LTS who was diagnosed in 1994). So this isn't a forum about who has lived with AIDS the longest (which again is quite different from just being HIV+. trust me there's a big difference between being positive and having "full blown" AIDS. but that's something for a different thread ;) ), but it's a forum for people who were the "guiena pigs" as the doctors and scientists learned about how to deal with and treat this illness in the early years of this pandemic.

Personally, I believe that somewhere down the road this LTS forum will disappear. Oh not because there won't be people who have lived with HIV/AIDS for many years; but because that won't really mean anything. This forum is here today because some of us were diagnosed a while back when treatments were different. For example some of us were on that AZT treatment and now that just doesn't happen anymore, so there won't be anyone at a future date that would have any reason to discuss the problems related to that, and thus there won't be a forum dedicated to those issues. A person diagnosed in 1995 has had vastly different experiences and treatments than a person who was diagnosed in 2005. Barring a cure or a vastly different medical regiment, if HIV is truly becoming a "chronic, manageable" disease then in 20 yrs, a person who is diagnosed today in 2009 and gets proper treament will be no different than and have no different experiences than a person diagnosed in 2029 and there won't be a need for this forum at all.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline dixieman

  • Member
  • Posts: 889
Re: Apologies
« Reply #7 on: October 29, 2009, 04:21:37 PM »
Wildcat is that you in the picture? well apology accepted... plus looking at your cd4 numbers youve come along way from way down at the bottom of only having 8 cd4s hopefully your viral load will soon be non detectable...

Offline Dale Parker

  • Member
  • Posts: 266
Re: Apologies
« Reply #8 on: October 29, 2009, 11:51:21 PM »
Hey guys and gals: I hate to ask stupid questions but would I be allowed to post here? I only got tested and was diagnosed in spring of this year but my CD4 count was 21. The doctor figures that I have been positive for 10 to 15 years. I've only been on the meds for 6 months and up until then (I hate to admit it but) I was pretty ignorant of HIV and Aids. I don't know a lot about it. I most likely have problems that come with having Aids for a long time but, not the problems associated with long term medication use.
  Currently I post in the Just Tested Positive (as there is still a lot for me to learn) and the living with HIV section (depending on what I think the relevance of the item is). Although my personality is that I MUST plan and NEED to know what to expect is going to happen in the future so I can prepare for it. I must admit that I am terrified at the moment to go into the Long Term Survivors section.
  I recently saw the TV show on Freddie Mercury of musical group Queen fame (one of my favorite groups).  His lover made a comment about how much pain Freddie was in at the end of his life. It scared the living shit out of me but at the same time my brain said that I must look into long term problems.
  Being a "newbie" I'm taking my education one step at a time as I think I can handle it.  My guess is that in the next few weeks, or months, I will be reading the Long Term post but, will I be allowed to post there if I feel it's relevent?
   
Apr 09  CD4 21, CD4/CD8 ratio 0 VL 500,000+
July 09 CD4 158, CD4/CD812% VL 750
Oct 09 CD4 157 CD4/CD8 14% VL UD
Feb 10 CD4 197, CD4/CD8 11% VL UD
May 10  CD4 252 CD4/CD8 12% VL UD
Aug 10 CD4 211 VL UD
Nov 10 CD4 272 CD4/CD8 0.138 VL UD

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,903
Re: Apologies
« Reply #9 on: October 30, 2009, 08:09:00 AM »
Dale, I'm not trying to be a btich, but my initial reaction is "no."  I know it seems like you should, since your doc thinks you've been positive for so many years, but we who post here (at least those of us that are supposed to post here), tested positive many years ago.  We've been through a lot of hell with the earlier meds, and illnesses that a lot of people who test + today, no matter what their T-cell count is, will never experience. 

So, that's my take.  No harm reading, but please respect the reason for having this forum.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Dachshund

  • Member
  • Posts: 5,951
Re: Apologies
« Reply #10 on: October 30, 2009, 08:31:26 AM »
Hey guys and gals: I hate to ask stupid questions but would I be allowed to post here? I only got tested and was diagnosed in spring of this year but my CD4 count was 21. The doctor figures that I have been positive for 10 to 15 years. I've only been on the meds for 6 months and up until then (I hate to admit it but) I was pretty ignorant of HIV and Aids. I don't know a lot about it. I most likely have problems that come with having Aids for a long time but, not the problems associated with long term medication use.
  Currently I post in the Just Tested Positive (as there is still a lot for me to learn) and the living with HIV section (depending on what I think the relevance of the item is). Although my personality is that I MUST plan and NEED to know what to expect is going to happen in the future so I can prepare for it. I must admit that I am terrified at the moment to go into the Long Term Survivors section.
  I recently saw the TV show on Freddie Mercury of musical group Queen fame (one of my favorite groups).  His lover made a comment about how much pain Freddie was in at the end of his life. It scared the living shit out of me but at the same time my brain said that I must look into long term problems.
  Being a "newbie" I'm taking my education one step at a time as I think I can handle it.  My guess is that in the next few weeks, or months, I will be reading the Long Term post but, will I be allowed to post there if I feel it's relevent?
   

We would respectfully ask that you not post here Dale. If you have a question about it start a new thread in Living With.

Offline WildcatCC

  • Member
  • Posts: 91
Re: Apologies
« Reply #11 on: November 03, 2009, 10:32:53 AM »
(ok last post here I promise)

No one said anything to me or derided me about posting on this site. I asked a question THEN I read "the rules" and read some of other posts here in the LTS forum. I am respecting those LTSers who have asked newbies not to post questions that could otherwise be addressed in alternative forums. I have gleaned a significant amount of information from the LTS posts - one just has to read these posts to learn and to admire. I don't have to ask questions. "That" was what the apology was for.

Apr  08 - Diagnosed
Apr  08  cd4 8, vl 150k
Meds: Prezista/Norvir/Truvada
June 08 cd4 250, vl 1600
Aug  08 cd4 275, vl 450
Meds: Atripla
Nov  08  cd4  386, vl 255
Jan   09  cd4  415, vl 2100 (spike?)
Feb   09  cd4 460, vl 212
May   09  cd4 515, vl 1200
Aug   09  cd4 717, vl 1535 % 23
Sept  09  cd4 535  vl 1710 % 18
Oct   09  genotype shows mutation. Discussing w/ ID Doc
Nov  09   cd4 480  vl 650   % 19
Dec  09 genotype slight mutation to Epivir and Retrovir
Jan 10   cd4 508 vl 250 (21%)  low vitamin d - on supplement 2000 iu/day
Mar 15 Change to Isentress and Truvada
May 5 cd4 498 vl 1485
June 16 cd4 550 vl undect!!!! (finally dammit)

Offline MarcoPoz

  • Member
  • Posts: 396
Re: Apologies
« Reply #12 on: November 03, 2009, 03:55:55 PM »
These remarks are not becoming us LTSer's at all.  I totally agree with Killfoile.  This was set up as a safe place for us LTSer's to talk about things and get our peers opinions and help.  No one said we are keeping it among "just" LTSer's because we don't value newcomers.  We need our own space.  And that's not too much to ask.      Oh, and by the way, I am an older woman with Aids, and I take great offense to your remark about "some old women."  Totally uncalled for.

I'm now an older man living with HIV--I think I've earned the title of "Geezer" so no offense here ;-)

Wildcat--you were straight up about apologizing after you read the rules--good for you.  All have useful opinions and views (in my opinion anyway) but the LTS board is a special place for us long-timers to vent and support some issues that others just don't 'get' the same way.  Here's a goal--do ALL you can to become a LTS :-)

I hope that others don't see this as a "please, darling, the grown ups are talking" kind of thing and dismissing others.  It is not--again--from my point of view--and I hope it doesn't get to be that way.  Its just that as people newly living with HIV need and ask for certain things--so do us old and grizzled pozzies.

Here's just a snip of what I've been through this last 2 weeks:

-Had 2 VERY close friends--men I LOVED-- die from AIDS.  I'm now the sole survivor of an entire department from my old job.  The rest have all died from AIDS. 

-Docs are STILL confused about these major adrenaline and glucose 'dumps' I go through and now they happen 5-6 times a day.  They blame long term HARRT and longterm HIV infection.

-I gave public testimony at our state senate because they were trying to adopt a REALLY stoooopid law that would impact HIV.  I had to publically 'out' myself again.

-I passed out and threw up at work.

-My boss says I have a hard time choosing if I'm an activist or an employee. (I think they are one in the same)

-My doc says that my ED isn't going to fix itself and to the rest of my hormonal problems, he suggests both testosterone AND viagra.

-My father had a heart attack.

The thing is--I have made it through MANY weeks like this while juggling the physical, mental, emotional and spiritual dilemmas of living with HIV.  Not that I always do it well--but I've lived through these--just like the rest of the folks who have been infected as long and longer than me.

Time breeds its own process by which we live with HIV, I think.

 


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