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Author Topic: AIDSmeds on Facebook  (Read 5730 times)

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Offline Tim Horn

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  • Posts: 800
AIDSmeds on Facebook
« on: October 22, 2009, 06:01:13 PM »
For all you Facebook folks out there, we launched an official AIDSmeds page this morning and would be honored if you'd join as a "fan." You'll receive daily news updates, links to featured content, an alternative venue to connect with each other and the various other advantages associated with a Facebook group membership.

Give us a try, provide feedback on our wall and please don't hesitate to let me know if there's something you'd like to see featured in our daily feeds.

http://www.facebook.com/pages/AIDSmedscom/182236821677?ref=nf

Cheers,
Tim Horn

Offline Oceanbeach

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Re: AIDSmeds on Facebook
« Reply #1 on: October 22, 2009, 08:05:35 PM »
Thank you for the offer Tim Horn but no thank you.  I have no intention of living with HIV on Facebook.  If the services as you describe are valid and of any real importance, perhaps you should offer them as AIDSmeds features instead.  Have the best day
Michael 

Offline joemutt

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Re: AIDSmeds on Facebook
« Reply #2 on: October 23, 2009, 04:52:04 AM »
same here, my family and friends know about my hiv but linking to aidsmeds on facebook
would make me feel uncomfortable.

Offline carousel

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Re: AIDSmeds on Facebook
« Reply #3 on: October 23, 2009, 06:04:20 AM »
Like the idea but don't think that I am ready to join the group.

Kind of makes me feel a bit sad that linking my profile to this would be of any concern.

The picture of Regan Hofmann is a hoot.  Was she a Kate Bush tribute act in a former life?


Offline mecch

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Re: AIDSmeds on Facebook
« Reply #4 on: October 23, 2009, 06:22:32 AM »
Ditto above.  Cool if it helps generally with awareness, education.  

I feel its a bit weird that you make this announcement without saying anything about
1) the confidentiality issues, already mentioned by other members
and
2) possibility that Facebook will dilute, reduce, or distract from communication here in these forums.

So what gives?
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline Tim Horn

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Re: AIDSmeds on Facebook
« Reply #5 on: October 23, 2009, 08:10:36 AM »
Thanks for all of the comments above.

The primary purpose of an AIDSmeds Facebook page is to highlight the content of this website -- its treatment news stories, its web exclusives, its lessons, its interactive tools -- for anyone in the Facebook community who is even remotely interested, for whatever reason, in the treatment and management of HIV. Just as other HIV/AIDS [and other medical] informational websites have been able to expand their readership by posting fan pages on Facebook, given that many people enjoy using social networking media for their jumping off point for information that affects their lives, we also thought it would be a good way to highlight everything AIDSmeds has to offer to those who don't find their way to AIDSmeds.com, including these forums, on a regular basis.

I apologize if it sounded as if I was encouraging members of the Forums to use AIDSmeds.com's Facebook page in the same manner they use the Forums. These Forums, because of the anonymity and confidentiality they provide, will always be here and should remain the place where people feel most comfortable communicating about issues in their lives. While we may encourage "fans" of AIDSmeds on Facebook to join the Forums, we're not going to be calling out Facebook members or asking any fans to reveal themselves as Forums members or participate the way they do here.

Forums members are one click away from the editorial content we offer, via the navigation bar at the top of this page. Again, the purpose of developing an AIDSmeds Facebook page is to be able to deliver information directly to Facebook members' feeds, ultimately bringing the important editorial content of this website directly to many people's doorsteps. While we do everything in our power to keep the Forums safe from outside interference and to protect everyone's identity, the much larger AIDSmeds site is hardly an internet secret intended only for our Forums members. Many people living with HIV, care providers, advocates, researchers, journalists and people simply interested in HIV use our content regularly -- many of whom are heavy users of Facebook -- thus this is our way of bringing the content of this site directly to them.

It definitely saddens me that many people are reluctant to become a fan of a Facebook page because it will somehow make them "guilty by association." Such is the stigma of HIV/AIDS and, while it truly is heartbreaking, we totally understand that many Forums members -- and many people living with HIV -- would prefer not to be connected with any sort of HIV/AIDS group on Facebook for this reason.

For those of you who aren't concerned about your much more public identity as a Facebook member being associated with a group seeking to promote the latest information on HIV/AIDS, we now offer AIDSmeds on Facebook. Again, in no way are we suggesting that AIDSmeds on Facebook be considered an extension of these Forums, but rather an easier way for Facebook users to access the content we offer beyond the Forums. It was just an invite -- not a sea change in how we go about promoting this site's content.

Tim

 
« Last Edit: October 23, 2009, 09:12:02 AM by Tim Horn »

Offline bear60

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Re: AIDSmeds on Facebook
« Reply #6 on: October 23, 2009, 03:37:07 PM »
Good news..!
Poz Bear Type in Philadelphia

Offline Oceanbeach

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Re: AIDSmeds on Facebook
« Reply #7 on: October 23, 2009, 03:44:30 PM »
I am not impressed by you Tim Horn.  Over the past 13 years as a person living with HIV/AIDS, I have been in an HIV clinic in one large city, one small town and one small city.  I have seen in 13 years Poz magazine each a point where absolutely no one is reading your magazine in HIV clinics.  It sits on the shelves month after month.

I would suggest that if you really are so involved in the fight against HIV that you and Ms. Hoffman re-figure the formula on your magazine.  I am not impressed with Ms. Hoffman either.

I am embarrassed to say after 4 years of being a member of these forums, I have not once seen Ms. Hoffman post on any thread even one time.  If she is on Oprah, everyone goes "oh, how brave that woman is"  Brave for what reason, taking a photo op to insure her pay check?

Facebook members sometimes are not aware their posts on Yelp or their membership on a dating site are picked up and added to their Facebook profiles, for all to see.  Apparently my confidentiality as a person living with AIDS for 13 years is of less importance that the AIDSmeds readership numbers.  Facebook uses members first and last names and has no listed phone numbers for their corporate offices.  How does an individual contact a company with NO Customer services links and NO Phone Number?

Why don't you and that BRAVE Ms. Hoffman simply publish our confidential information in the AIDSmeds site and Poz magazine?  If at any time, my personal information from this site gets published on Facebook, you can be assured that you and Ms. Hoffman will have the opportunity to find out what it means to live on a disability income (as you read about in these forums), as I will serve you both with legal documents.

Tim Horn, because of your disrespect for my confidential information, AIDSmeds has lost another member, I will not post here again. I will be watching Facebook because I believe I can get a fetching price for your houses.  Have the best day
Michael

Offline skeebo1969

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Re: AIDSmeds on Facebook
« Reply #8 on: October 23, 2009, 04:11:05 PM »


  Well jeez...  I guess now is not a good time to share how I found the girl and guy who were voted most attractive in my senior class on facebook this morning..  I look better than both of them if anyone cares to know. 
I despise the song Love is in the Air, you should too.

Offline Ann

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Re: AIDSmeds on Facebook
« Reply #9 on: October 23, 2009, 04:27:15 PM »
I'm not a regular facebook user by any means - I only have an account there because when my daughter was at university, it was an easy way for her to share her latest photos with me.

BUT, I don't understand how anyone could think their membership could be traced back here from a special-interest group on facebook - UNLESS THEY JOIN THAT SPECIAL INTEREST GROUP.

Nobody who visits AIDSmeds or the Forums will be automatically made a "fan" of the AIDSmeds Facebook page.

I don't get these accusations of breach of confidentiality. Am I missing something? Can somebody please explain?

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Joe K

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Re: AIDSmeds on Facebook
« Reply #10 on: October 23, 2009, 04:56:57 PM »
I think the issue centers on the fact that Facebook shows your first and last name and if you join the AM group, then your first and last name is listed as a friend.  I could see how this could present a real concern for many of our members.  I just joined this group and if you look at the friends list I am listed as Joe Killfoile, not as my username of "killfoile".  Being new to FB I have no idea if I can change any of this, but all I ever see listed as friends are first and last names.

edited to add: my username on FB is also killfoile as in facebook.com/killfoile.
« Last Edit: October 23, 2009, 05:10:24 PM by killfoile »
Life is what happens, when you are busy making other plans.

Though you may be only one person in the entire world, to one person, you may be the entire world.

I wish to become half the man, that my dog thinks I am.

Remember me with simple acts of kindness and I will live forever.

Offline Miss Philicia

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Re: AIDSmeds on Facebook
« Reply #11 on: October 23, 2009, 05:30:11 PM »
1) nobody here is forcing anyone to "fan" the AIDSmeds group page.

2) if you decide to "fan" the AIDSmeds group page, you can feasibly restrict who sees this in the privacy settings, though if you have 300 friends and don't want 200 of them to see it you're going to be busy for an hour entering those 200 names.  But if anyone just wants to knock off say five names it's very easy: go to your privacy settings, then click the "profile" section, then go to "personal info" and click on the pop up window to the right, then select "customize", then under "Friends" make sure "Only Friends" is selected, then go to the bottom of that pop up where it says "Except These People" and enter the names of people on your friends list that you don't want to be able to view what groups you belong to.
"Iíve slept with enough men to know that Iím not gay"

Offline skeebo1969

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Re: AIDSmeds on Facebook
« Reply #12 on: October 23, 2009, 09:55:29 PM »


  I just want to thank Tim for making me curious about this whole facebook deal.  I went and checked it out and that is when I came across some of my old classmates from elementary through highschool.  I think it is crucial for everyone to know that I look 10 times better than Leo Kasper, the guy who was voted best looking in my senior class.

  I bet Miss Sherry Foland would pick me over him now...  Take that Leo, you little hazel eyed bastard!
I despise the song Love is in the Air, you should too.

Offline edfu

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Re: AIDSmeds on Facebook
« Reply #13 on: October 24, 2009, 04:24:57 AM »
 :-*
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline Snowangel

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Re: AIDSmeds on Facebook
« Reply #14 on: October 24, 2009, 11:13:45 AM »
Funny, Skeebo....My problem on facebook is not remembering any of the people I went to school with.

Can't your friends go to your profile and see a list of what groups you have joined?
Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

One thing you can give and still keep...is your word.

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Offline Ann

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Re: AIDSmeds on Facebook
« Reply #15 on: October 24, 2009, 11:28:57 AM »

Can't your friends go to your profile and see a list of what groups you have joined?


Hi Snow. Miss P outlined a way to make your group list private.


2) if you decide to "fan" the AIDSmeds group page, you can feasibly restrict who sees this in the privacy settings, though if you have 300 friends and don't want 200 of them to see it you're going to be busy for an hour entering those 200 names.  But if anyone just wants to knock off say five names it's very easy: go to your privacy settings, then click the "profile" section, then go to "personal info" and click on the pop up window to the right, then select "customize", then under "Friends" make sure "Only Friends" is selected, then go to the bottom of that pop up where it says "Except These People" and enter the names of people on your friends list that you don't want to be able to view what groups you belong to.


I suppose it might make me sound like a bitch, but I have no desire to get back in contact with people I went to high school with. Another reason why I can't be bothered with FaceBook. I don't want any of those two-faces idiots (being polite here...) getting in touch with me. I didn't move half-way around the world because I wanted any of them in my life. There are some from my adult life in the States I wouldn't mind getting in touch with, but I can do that on my own, I'm sure.

But anyway, I think AIDSmeds having a FaceBook profile is a great idea for those who ARE into internet social networking and aren't in the hiv closet. For those of you in the closet, just don't join the group and it will not have any effect on you whatsoever. Simple.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline hivsweden

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Re: AIDSmeds on Facebook
« Reply #16 on: October 24, 2009, 05:08:20 PM »
I agree wholeheartedly with Ann's post. I'd also like to add that it saddens me that myself and many others feel that we cannot even become fans to such a FB page. Hopefully this will change somewhat in the future and perhaps in some small way a FB page can help.


Offline David_CA

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Re: AIDSmeds on Facebook
« Reply #17 on: October 24, 2009, 05:30:25 PM »
People are so strange (to me) sometimes!  We use Facebook a lot... to keep up with current friends.  I've never seen any classmates or such silly stuff on there.  Of course, one can join with a 'pseudonym' and not use their real name if they're concerned. 

I think it's great that AM is on Facebook even if some individuals don't become fans.  One can still check headlines, etc on the AM / Facebook page.  The more public HIV / AIDS becomes, the better.  I still don't know what the big to-do about it is.

Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
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02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
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01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
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Offline skeebo1969

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Re: AIDSmeds on Facebook
« Reply #18 on: October 24, 2009, 05:55:17 PM »
People are so strange (to me) sometimes!  We use Facebook a lot... to keep up with current friends.  I've never seen any classmates or such silly stuff on there.  Of course, one can join with a 'pseudonym' and not use their real name if they're concerned. 

I'm strange to me too.  And I agree Leo did look quite silly.

One thing I did notice is that you can access the forums via facebook because they have a link for doing so.  Being that I am not totally in tune with how this whole thing operates (facebook that is), do they have to be a friend to access the link or can anyone who is persuing facebook come across that link and visit?

Not that I have any concerns about it myself.  I could care less now a days who knows my status and how they perceive me.  However, I can see how some might have a problem with it if this is possible and they are not so comfortable with their status being made public.

This arguement though kind of reminds me of the one back when Aidmeds merged with Poz.  A lot of members here had issue with it possibly bringing a lot of outsiders and concerns of privacy and the likes were a main part of the arguement.  I was one of those, if my poor memory serves me correctly, and well it was all for not.  I think it had more of a positive impact and today commend the decision.

I have a feeling this will be much the same.  If it can get the message out there and touch just one individual then it is a job well done by Mr. Tim Horn.  And Tim once again I want to thank you for the boost to my ego this week......  Leo Kasper ain't got nothing on ole Skeebo!
I despise the song Love is in the Air, you should too.

Offline BlueMoon

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Re: AIDSmeds on Facebook
« Reply #19 on: October 24, 2009, 08:28:20 PM »
Facebook shmacebook!

Put an AIDSmeds profile on Manhunt and maybe I'll be interested.    ;D
...................VL.....CD4.....%
-----------------------------------------
08/10-- ......<40.....290.....42
05/10-- ......<48.....290.....46
02/10-- ......<48.....481.....44
10/09-- ......<48.....277.....46
07/09-- ......<48.....300.....38
05/09-- ........51.....449.....39
03/09-- Added Isentress
02/09-- ........65.....299.....34
11/08-- ........62.....242.....40
08/08-- ........66.....212.....29
05/08-- ......202.....217.....27
03/08-- ....5210.....187.....21
02/08-- Began Truvada/Reyataz/Norvir
12/07-- 273,000.....157.....22
11/07-- 229,000.....209.....22
10/07-- Diagnosis

It's a complex world.

Offline Ann

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Re: AIDSmeds on Facebook
« Reply #20 on: October 25, 2009, 07:24:12 AM »

 can anyone who is persuing facebook come across that link and visit?


Newsflash!!!

Anyone perusing the internet, let alone FB, can come across links to AIDSmeds and visit the forums. These forums are PUBLIC, in case anyone is under any illusion to the contrary.

That's why there's a Welcome bar across the top of each and every forum page. If you toggle the little arrow on the right-hand side, it drops down into a message. Most of you will have had to shut this drop down message at some point, but just to remind you of what it says:

Welcome to the AIDSmeds/POZ Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.


Remember folks, the more we hide, the more we HAVE to hide!

We've got to stop perpetuating the stigma we face. Stand up and say "I'm NOT ASHAMED!"

Ann
« Last Edit: October 25, 2009, 07:25:50 AM by Ann »
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline mecch

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Re: AIDSmeds on Facebook
« Reply #21 on: October 25, 2009, 09:16:08 AM »
Why is everyone judging each other here in this thread?

Everyone has their own unique situation regarding disclosure and fighting the stigma of HIV.

What I felt was important is the information that Miss P kindly provided - technical information about how to deal with privacy on Facebook.   This was BOUND to be a concern of people in the AIDSMEDS forums, though not all members, and there was no mention of that in Tim Horn's "cheery" initial post.

Everyone should be aware that AIDSMEDS is fully searchable.  And that Facebook has its own critics regarding the security of its database.  There have been gross indiscretions already - all private data delivered to independent developers, etc.  

Here is a guide I posted in another thread and it is worth reposting here:  It takes into account new privacy options that FACEBOOK put in place last summer.

5 Easy Steps to Stay Safe (and Private!) on Facebook
http://www.readwriteweb.com/archives/5_easy_steps_to_stay_safe_and_private_on_facebook.php

Everyone should know that if one is lazy about what one posts on the Internet - other people are NOT lazy about searching for it.  I wouldn't want to live in the USA in this current climate and be HIV positive and be looking for a job and have my HIV status easily suspected or confirmed.

One should not "trust" Facebook to protect anything that one posts.  Read more expert analysis here.
http://news.idg.no/cw/art.cfm?id=D14C9B49-1A64-6A71-CEBB8DE087527FB6

The second point was that there could be, though probably wont be, a diversion of discussion to FACEBOOK.  Probably won't be, because facebook is not technically set up as a discussion forum and does not support the kind of posts that a forum like AIDSMEDS does.  But it is something to consider.

Just thought the original post by Tim Horn was a bit skant and maybe, to some, cavalier.  And we see that in this thread, a few people did feel that Tim's post was nonchalant at best, arrogant or dismissive at worst.  I think his follow up explanation put it in better perspective!

Nobody said that AIDMeds shouldnt be on Facebook.  The objections come out of fear, misinformation, lack of dialogue.  

« Last Edit: October 25, 2009, 09:20:37 AM by mecch »
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline skeebo1969

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Re: AIDSmeds on Facebook
« Reply #22 on: October 25, 2009, 09:47:27 AM »

Shame and stigma should not be confused... 

Why is everyone judging each other here in this thread?


Very good question mecch. 
I despise the song Love is in the Air, you should too.

Offline edfu

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Re: AIDSmeds on Facebook
« Reply #23 on: October 25, 2009, 07:35:28 PM »
IMHO, there is a huge difference between disclosing on a one-to-one basis, where you can guage the other person's ability to process the information and can steer their reaction, and disclosing in a public forum for everyone and anyone.  There is such a thing as personal privacy, and it has nothing to do with shame.  For example, I fail to see the need to publicly disclose, willy-nilly, that one has gingivitis or Irritable Bowel Syndrome.  One might tell a good friend, but what is the compulsion to tell the world?  There is a time and place for everything.   I might participate in an ACT UP demo, but does that mean I necessarily must wear an ACT UP T-shirt to the supermarket?     
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline Miss Philicia

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Re: AIDSmeds on Facebook
« Reply #24 on: October 25, 2009, 07:56:43 PM »
Pretty much
"Iíve slept with enough men to know that Iím not gay"

Offline dtwpuck

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Re: AIDSmeds on Facebook
« Reply #25 on: October 25, 2009, 08:09:43 PM »
Newsflash!!!

Anyone perusing the internet, let alone FB, can come across links to AIDSmeds and visit the forums. These forums are PUBLIC, in case anyone is under any illusion to the contrary.
We've got to stop perpetuating the stigma we face. Stand up and say "I'm NOT ASHAMED!"





Funny how often I talk to people who have googled me and found postings here.  I think putting AIDSMeds on FB is a great idea.  For people who wish to remain anonymous, no one is forcing them to fan it.  But, please, FB isn't this terrible monster out there to disperse everyone's secrets to anyone who wishes to google stalk them.  



And, it's not like FB doesn't offer users the option to hide information they don't want others to see.    And, it's not as if anyone can tell if someone visits a site.  Geez.  Such a lot of drama over a completely benign technology.  


I fanned it by the way.
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline Basquo

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Re: AIDSmeds on Facebook
« Reply #26 on: October 25, 2009, 09:18:37 PM »
I am not impressed by you Tim Horn.  Over the past 13 years as a person living with HIV/AIDS, I have been in an HIV clinic in one large city, one small town and one small city.  I have seen in 13 years Poz magazine each a point where absolutely no one is reading your magazine in HIV clinics.  It sits on the shelves month after month.

I would suggest that if you really are so involved in the fight against HIV that you and Ms. Hoffman re-figure the formula on your magazine.  I am not impressed with Ms. Hoffman either.

I am embarrassed to say after 4 years of being a member of these forums, I have not once seen Ms. Hoffman post on any thread even one time.  If she is on Oprah, everyone goes "oh, how brave that woman is"  Brave for what reason, taking a photo op to insure her pay check?

Facebook members sometimes are not aware their posts on Yelp or their membership on a dating site are picked up and added to their Facebook profiles, for all to see.  Apparently my confidentiality as a person living with AIDS for 13 years is of less importance that the AIDSmeds readership numbers.  Facebook uses members first and last names and has no listed phone numbers for their corporate offices.  How does an individual contact a company with NO Customer services links and NO Phone Number?

Why don't you and that BRAVE Ms. Hoffman simply publish our confidential information in the AIDSmeds site and Poz magazine?  If at any time, my personal information from this site gets published on Facebook, you can be assured that you and Ms. Hoffman will have the opportunity to find out what it means to live on a disability income (as you read about in these forums), as I will serve you both with legal documents.

Tim Horn, because of your disrespect for my confidential information, AIDSmeds has lost another member, I will not post here again. I will be watching Facebook because I believe I can get a fetching price for your houses.  Have the best day
Michael

Nice, Michael, vey nice. You have a history of calling out people who have done nothing but casually, indirectly ask for your support, and you reply as if you are being cornered.

Nobody's attacking you, and fyi, if you google the phrase "I am not impressed by you Tim Horn" well guess what, your post is the first hit. I am reluctant to reply but your history of replying with your own wizened anecdotes and only offering advice when chastised after lashing out settles sour with me.

I am not a moderator here, but damn, your first reply should have been enough. I'd be interested to see what happens now that you've threatend this haven with legal action.

Please, Michael, Tim's response after your post was in general, not to you specifically. Again, nobody's attacking you. Social networking sites are the now.  POZ is just trying to engage everyone they can.

Offline GSOgymrat

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Re: AIDSmeds on Facebook
« Reply #27 on: October 25, 2009, 09:24:57 PM »
Funny how often I talk to people who have googled me and found postings here.  

How do they find you here? Are they searching "dtwpuck"? Just curious.

Offline Joe K

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Re: AIDSmeds on Facebook
« Reply #28 on: October 25, 2009, 09:29:10 PM »
My point was not that AM would be shown as a group on a personal profile, rather that anyone visiting the AM group, could see your whole name, if that is how you joined FB.  I believe that represents a very real issue for many members and that is why I mentioned it.  We talk about informed consent, so why not state all the facts as we know them?
Life is what happens, when you are busy making other plans.

Though you may be only one person in the entire world, to one person, you may be the entire world.

I wish to become half the man, that my dog thinks I am.

Remember me with simple acts of kindness and I will live forever.

Offline dtwpuck

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Re: AIDSmeds on Facebook
« Reply #29 on: October 25, 2009, 09:32:18 PM »
How do they find you here? Are they searching "dtwpuck"? Just curious.

I assume so.  Since I've used it as my ID in numerous places, it wouldn't be difficult.   
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline mpositive

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Re: AIDSmeds on Facebook
« Reply #30 on: October 25, 2009, 09:35:20 PM »
Wow, I don't think that there is anything wrong with AidsMeds on FAcebook at all.  I am certainly one of those people that would not join as I am very much in the "HIV Closet" as someone put it.  But, that is my business and to berate and attack Tim, i am not sure why that poster did that.  I assume he has other issues with them, otherwise, that was just plain strange.  Live and let live....nobody forces us to get involved in everything, we are all free to be as involved as we choose to be. 
My two cents....  :)

Offline antibody

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Re: AIDSmeds on Facebook
« Reply #31 on: October 27, 2009, 11:19:51 PM »
oce I get over my fear of the stigma that everyone will know. I will join. As of now I am secretive about my status. I am scared to let everone know at a glance.
Timbuk      <50/ 794  CD4 10/06 
                 <50/ 1096 CD4 3/07
                 <40/ 1854 CD4 4/09

Started Atripla  7/14/06
Switched to boosted Reyataz Truvada 3/28/07

*Ask me about Medical Marijuana and how it can help you!*

Offline edfu

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Re: AIDSmeds on Facebook
« Reply #32 on: October 28, 2009, 12:00:24 AM »
Antibody, your fear is understandable and nothing for which you should be ashamed.  There is no good reason for you "to let everyone know at a glance."  There is no good reason why you should have to go to excessive lengths on your computer to program who can and cannot know.  You have the right to maintain your privacy on this issue with nonsexual contacts if you so wish and to determine on a one-to-one basis whom you wish to tell.  Best wishes.   
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline dtwpuck

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Re: AIDSmeds on Facebook
« Reply #33 on: October 28, 2009, 07:13:41 AM »
oce I get over my fear of the stigma that everyone will know. I will join. As of now I am secretive about my status. I am scared to let everone know at a glance.

You might consider not putting your myspace link on your profile here then.  
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline Miss Philicia

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Re: AIDSmeds on Facebook
« Reply #34 on: October 28, 2009, 09:53:38 AM »
Michal Pozdal from Poland is quite the tasty one.
"Iíve slept with enough men to know that Iím not gay"

Offline Oceanbeach

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Re: AIDSmeds on Facebook
« Reply #35 on: November 09, 2009, 11:24:23 AM »
Dear Tim Horn, Regan Hofman and everyone,

I was out of line on some of my comments in this thread, have put myself on a little time out and if anyone wants to know, here is what happened.

My sister found a friend I had known since the 6th grade on Facebook and got my email address.  My family life was always disfunctional and when Mom died that Christmas, everyone went out of their way to cause me additional grief.  We have not had much contact in the past 25 years.

I did call her once, I was recently diagnosed, had no case management yet and I asked her to wire 20 bucks to L.A. so I could eat for 2 days when I got my food stamps.  She declined, apparently feeding a brother with HIV was not a good investment.  After the call was finished, there was a knock on my door.  The L.A.P.D. was sent by her to put me on a suicide watch.  The officers said I should get a new family and went to the supermarket, bought me some food and that was it.

So with my sister having my email address, she started sending hate mail, speaking for the entire family.  I used to have to walk a mile to the P.O. or the store with PN and always in pain but I had to walk.  My brother and his wife lived 5 miles away and never came by to offer any help.

According to my sister, they (the entire family) are upset because I alienated myself from them, am Gay, have AIDS and am an embarassment to them.  They want me to die alone, I am no longer a member of that family.

I have put my name out to the press many times while fighting to retain Title I funding in Sonoma County.  I spent the first 2 years right here.  It was my personal choice to disclose, we lost our funding and every prediction of loss of services, I wrote about are coming true here everyday.  Food for Thouught, Sonoma Counties AIDS Food Bank has just sent out letters they lost another $100,000 in addition to the RWCA monies.  Face to Face, our ASO had to let their in-home nursing staff go.  Between the loss of the Title I funds and the cuts in the California state budget, services are getting harder to get, if at all.

I was taking 36 pills a day back then and starting today, I take 1 Atripla, I made the decision here on AIDSMEDS.

I am feeling good and take more vitamins than AIDS medications, I should be able to go back to work.  Never wanted to be on disability but there was no choice.  I have some support and am hoping to open an advertising agency in San Francisco.  I do not feel public about my status and I am building from the ground up.  I have been doing this work for someone I love for a year now and I have his friends as prospective clients.  I am very concerned that someone like my sister will find someone I care about.  Do you have an idea about how difficult it is to bring one website out of obscurity and never get higher that page 7?  No one shops past page 3.

We all know how hard it is to have HIV/AIDS and my Commission on AIDS project, Community Reconnect has always taken away from helping people with HIV to find work.  They have never invited an actual employer to the meetings and in 3 years have never placed a person with HIV in any job.  With a 13 year gap in employment, I may have been the VP of the nation's front runner in workers' comp reform once but it is either create my own opportunity or grilling cow parts at Burger King.  I will try to be a better person than I was earlier in this thread.   ;D  Have the best day
Michael

Offline Ann

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Re: AIDSmeds on Facebook
« Reply #36 on: November 09, 2009, 11:58:26 AM »
Michael, it's great to see you back here. I missed you and I'm sure others have as well.

Your sister pisses me off. How unfortunate to have a hateful bigot like that as a sister. Forget her, I  love you. I'll be your honorary sister, if you like. ;)

You might enjoy the song this thread: http://forums.poz.com/index.php?topic=29804.0
Hugs,
Ann
xxx
« Last Edit: November 09, 2009, 11:59:59 AM by Ann »
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline BT65

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Re: AIDSmeds on Facebook
« Reply #37 on: November 09, 2009, 01:35:36 PM »
Michael, I'm so glad you've returned.  I'm so, so sorry about your sister, and family.  Well, they don't know what they're missin'.  I'm glad you're with us.  Good luck. :)
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline skeebo1969

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Re: AIDSmeds on Facebook
« Reply #38 on: November 09, 2009, 04:21:06 PM »


  Michael glad you are back.  You and I must be brothers because it seems we have the same sister. :-\
I despise the song Love is in the Air, you should too.

Offline Oceanbeach

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Re: AIDSmeds on Facebook
« Reply #39 on: November 09, 2009, 04:54:56 PM »
It was kind of hard to notice in the last election over that candicate in Alaska, but John McCain's wife claimed to be an only child and actually has 2 siblings.  I wonder why she did that, at least they had beer money   ;D  Have the best day
Michael

Offline Nashvegas

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Re: AIDSmeds on Facebook
« Reply #40 on: November 09, 2009, 05:51:22 PM »
Welcome back Michael.  I've missed reading your posts! 
8/12/06 - sero-conversion
9/14/06 -- Positive Test results confirmed
9/21/06 -- CD4 - 586; viral load 8,000; 29%
12/25/06 -- CD4 - 373; VL 2,800; 23%
2/10/07 - CD4 - 228; VL 865; 25%
3/15/07 -  CD4 - 365 (no viral load test)
5/1/07 = CD4 - 341; VL 4,358; 27%
8/1/07 - CD4 - 315; VL - 2,300; 25%
9/20/07 - CD4 - 378
11/22/07 - CD4 - 257; VL 7,300;
2/27/08 - CD4 231 (16.5 %), VL 5,960
5/20/08 - CD4 229 (18.3%), VL 11,100
6/17/08 - CD4 166 (14.5%), VL 9,030
6/17/08 - STARTED VIRAMUNE + TRUVADA
7/2/08 - CD4 272 (20%), VL 113  :-)
7/16/08 - CD4 -217 (21.1 %), VL - Undetectable
7/30/08 - CD4 - 220 (20.4%). VL - 92
8/14/08 - CD4 - 280 (22%) VL-undetectable
1/04/09 - CD4 - 250 (28%) VL-UD
5/15/09 - CD4 -393 (28%) VL-UD
8/15/09 - CD4-346, (26%) VL-UD
11/15/09 - CD4-373 (28%)

Offline Oceanbeach

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Re: AIDSmeds on Facebook
« Reply #41 on: November 09, 2009, 07:18:23 PM »
If I accidentally cut off all but one of my fingers with a skill saw, I would still have enough fingers to wave at that mean old woman in Colorado.  ;D  Have the best day
Michael

Offline joemutt

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Re: AIDSmeds on Facebook
« Reply #42 on: November 10, 2009, 02:43:13 AM »
Michael,I missed you too. Love,Joe.

tendai

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Re: AIDSmeds on Facebook
« Reply #43 on: November 16, 2009, 09:53:43 AM »
i've joined . i'm a fan!

Offline WildcatCC

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Re: AIDSmeds on Facebook
« Reply #44 on: November 19, 2009, 02:24:33 PM »
Michael, I don't know you but I sure want too. You are a strong person. Thanks for the update.

Incidentally, I googled myself (that sounds hot!). I didn't realize that I was a soccer star in 1984 in Springfield MA! Other then that there were links to FB postings I've made and thankfully they are filtered to a level of privacy I can live with.
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 Oceanbeach

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Re: AIDSmeds on Facebook
« Reply #45 on: November 19, 2009, 06:36:27 PM »
I have never actually googled myself but, I know others have.  We had a discussion on that at a Commission on AIDS meeting.  Today. I was talking to a volunteer at one of our ASO's and Thanksgiving and far away family came up.  His sister's church told her to disown him because he was Gay and HIS sister dropped the church.  My former sister is holier than thou and was once married to a Minister (Her second of three) but, of course, I always have used a lower case "g" in god so I do not appear to be pretentious.   ;D  Have the best day
Michael

Offline Ann

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Re: AIDSmeds on Facebook
« Reply #46 on: November 19, 2009, 07:31:04 PM »

I always have used a lower case "g" in god so I do not appear to be pretentious.


I always use the lower case "g" in google for the same reason.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

 


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