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Author Topic: Poz Face  (Read 3853 times)

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Offline Dachshund

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Poz Face
« on: July 25, 2010, 07:50:04 PM »

Offline edfu

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Re: Poz Face
« Reply #1 on: July 25, 2010, 09:04:29 PM »
Well, well, well...Mr. Sullivan seems to be bleating a slightly different tune from his notorious 1996 piece in The New York Times Magazine, "When Plagues End," in which he grandly announced the end of AIDS because of HAART.  That shockingly irresponsible bit of journalism played a major part in encouraging today's complacency (no big deal...just take a pill, etc.), epitomized by Sullivan's BS.     
"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 Dachshund

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Re: Poz Face
« Reply #2 on: July 26, 2010, 08:27:04 AM »
You're free to editorialize but it would be nice if you provided a link to the article. Of course I didn't post this to start a debate about Andrew Sullivan. I know Mark has written eloquently about this subject and I was wondering how other LTS might feel or deal. It's tough.

Offline Miss Philicia

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Re: Poz Face
« Reply #3 on: July 26, 2010, 10:30:31 AM »
You're free to editorialize but it would be nice if you provided a link to the article. Of course I didn't post this to start a debate about Andrew Sullivan. I know Mark has written eloquently about this subject and I was wondering how other LTS might feel or deal. It's tough.

Link to Sullygirl's original article "WHEN PLAGUES END; NOTES ON THE TWILIGHT OF AN EPIDEMIC", originally published in the New York Times Sunday magazine insert, 16 February 1997.  Unfortunately for edfu the article is full of enough caveats and nuance that I'm not sure why it's so offensive, even if on many other things I find Sullygirl a bit lacking.

As far as the subject of "poz face" and Mr. Petrelis - and one can see his original blog post here - I figure I've moaned about my own situation enough here for it to be familiar and have even thrown up pictures in the past.  I've had "poz face" (actually this is a phrase I never use, nor even hear, but perhaps that's just because the non-poz faces won't utter it in my presence) for a good decade in present form, and 2-3 years previous to that I began noticing it starting though I did my utmost to have a sense of denial about it, plus I don't recall it even being assigned a proper medical name and having a doctor assign this to me until 2000.

Previous to Sculptra's FDA approval in '04, I had collagen injections done ('01) for a tidy sum as I was still employed, the effect of which only seemed to last for six months and by that time I was no longer employed and couldn't continue this.  I eventually, by force, settled into my predicament.  The first several years it was rather miserable. By 2006 or so the Sculptra patient assistance program was in place and I made tentative steps to participate, but by that time I was more mentally reconciled and never followed up on it.  Like Petrelis states at the end of his nice post he reserves the right to change his mind about getting injections, and similarly I have now done so myself and will get them in less than a month.  I'd say my diagnosed Grade 3 (on a scale of 4) lipoatrophy is similar to what Petrelis shows.

Of course, fixing my face won't solve the discomfort I experience daily with the absence of fat on my buttocks and soles of my feet.  These days walking more than 30 minutes is exceedingly difficult, and forget ever sitting again on a simple park bench.  I'm fortunate in that I, thus far, have no lyperhypertrophy issues and my PI paunch is less than most LTS'ers, though I do have it some. 
« Last Edit: July 26, 2010, 10:38:24 AM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Online Joe K

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Re: Poz Face
« Reply #4 on: July 26, 2010, 11:28:47 AM »
I hear you Miss P., especially on the loss of body fat, as I can no longer sit on any hard surface for more than about 15 minutes. It would appear that all of my body fat, has either just disappeared, or gone internally, as my chest has been expanding for the past 5 years. The fat that remains now rings my midsection so I look like a barrel, wearing an inner tube. Not a pretty picture. What is most frustrating is my waist remains 33, while my chest and stomach keep on growing.

I don't even want to talk about my face. Suffice it to say, when I got my new passport, at 50 and I looked at my previous one, I could not believe they were the same person. Fortunately vanity has never bothered me and if it's a choice, between looking/feeling great and being dead, as opposed to my reality, well, what can any of us really do? The reality for most of us relics, is we live on a fixed income, can't afford the drugs to rebuild or reshape ourselves and for most of us, I am not so sure that we would, even if we could.

I say this, because I believe that a primary reason, that so many of us survived, is that we learned how to adapt and accept changes and to prioritize what is really important in life. As much as I would love to look like I did in my 40s, normal aging included, I can never have that again and while I do know that HIV has caused plenty of damage, I won't give the stinking virus the satisfaction of damaging my spirit. I know that beauty is only skin deep and even with all my maladies and malformations, I believe I am more beautiful today, than I have ever been in my life.

My true curse, depression, continues to consume me and there seems to be nothing I can do to halt its progress. Yes, I've changed medications, therapies, moodstones, you name it, but the past couple of years have been an utter hell. Watching my body degrade and knowing that I am losing my battle, within my mind, has left me... empty. Then Rick died. Lisa got robbed and I was thrilled to get her a new computer. Six months later, Lisa died. Then Tim died and that just crushed me.  Each time I lose someone special, especially as I age, I find my world becomes a little poorer. I just don't know how long I can keep losing friends and loved ones.

Every time I look in a mirror, I am reminded of the price I have paid, for being infected with HIV and I experience, simultaneously, abject horror and immense pride for what I have accomplished and I never forget the people, who helped to make me, the man I am today. I would imagine, that for most of you folks, while you hate the physical changes, you have accepted them and that ability, to me, is most probably why most of us are still here.

Online leatherman

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Re: Poz Face
« Reply #5 on: July 26, 2010, 11:40:27 AM »
Having looked through that blog posting, and the linked articles, I tend to think similar to something written in the blog comments: "What puzzled me--and still does--is that your face looks perfectly normal to me". To be honest, he looks no different than several friends (straight and gay and all neg) that I have. Actually, he's the spitting image of the 53 yr old hiv-neg father of a female friend I have back in Ohio.

what exactly are we supposed to be seeing that is representative of "poz face" versus simple aging?
leatherman (aka mIkIE)


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

Offline Miss Philicia

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Re: Poz Face
« Reply #6 on: July 26, 2010, 12:21:14 PM »

what exactly are we supposed to be seeing that is representative of "poz face" versus simple aging?

Only speaking for myself, my face experienced initial changes at the age of 33 so no, it wasn't due to aging.  It also happened in the span of 12 months.

Other than that with Petrelis picture (click it and enlarge it) you can see the recessed cheeks, lack of any fat at the temples (I have this and can barely wear sunglasses because of it -- I get instant headaches).  That's the lipoatrophy, but he's also got concurrent lipohypertropy that you can see in the enlarged jowls, and if he'd not worn a collared shirt I'm quite sure you'd see that his neck was larger than normal.  He's also probably got fat deposits on his upper back, but I'm just speculating.

When you know that the medication you've taken religiously for 15 years has caused your body to change it feeds in to a lot of psychological issues.  If your body hasn't changed, leatherman, then maybe you just don't know what other people suffer in this regard.  If I was to post a side-by-side picture of my brother, who is four years older than I am, you'd easily tell the difference, not just in the differing shape of our faces which used to be more similar, but the fact that I don't look younger than he does, I look even older.
« Last Edit: July 26, 2010, 12:28:51 PM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline AlanBama

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Re: Poz Face
« Reply #7 on: July 26, 2010, 12:50:53 PM »
Every time I look in a mirror, I am reminded of the price I have paid, for being infected with HIV and I experience, simultaneously, abject horror and immense pride for what I have accomplished and I never forget the people, who helped to make me, the man I am today. I would imagine, that for most of you folks, while you hate the physical changes, you have accepted them and that ability, to me, is most probably why most of us are still here.

Amen, brother !

I have to tell you all that having my cheeks and a portion of my temples "fixed" with Radiesse has made me feel a lot better about myself; now if they (or I?) could do something about this huge belly....

I go back for my follow-up and possibly some "touch up" Radiesse on Wednesday the28th.

Hugs to all, esp to you Joe

Alan
« Last Edit: July 26, 2010, 12:53:01 PM by AlanBama »
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Online leatherman

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Re: Poz Face
« Reply #8 on: July 26, 2010, 01:30:09 PM »
Only speaking for myself, my face experienced initial changes at the age of 33 so no, it wasn't due to aging....
Other than that with Petrelis picture (click it and enlarge it) you can see the recessed cheeks, lack of any fat at the temples ....  That's the lipoatrophy, but he's also got concurrent lipohypertropy that you can see in the enlarged jowls, and if he'd not worn a collared shirt I'm quite sure you'd see that his neck was larger than normal.
that exactly why I was asking about what I'm supposed to be seeing in this guy's picture. He's obviously not 33. To me he looks no different than many people I know in their late 40's to early 60's. Judging by his large arms and wide chest, his jowls and neck do not look inappropriate for some men his age and weight.

I found it even harder to see what he's talking about when he used a picture of Mick Jagger, who isn't poz but has worse features, as an explanation. I'm not denying that he has these problems which he writes about, but I'm finding it hard to understand what he's discussing when he looks like so many hiv-neg people in their 40s and older.

Perhaps a comparison picture of himself from 10 yrs ago would have illustrated his points better, than using the Jagger photo. Or even a picture of his father, at the same age, to show that his facial issues aren't genetic. I mention this as I compare the lines and wrinkles in my face (especially the forehead and "laugh" lines) compared against the changes in my Mom's face from her 30s-60s.

Although I still don't understand, from this man's example, thanks for trying to explain it to me. I'll do some more research about it.  ;)
If your body hasn't changed, leatherman, then maybe you just don't know what other people suffer in this regard.
I often wonder about these issues because I've always had what I think of as a poz-face. The lovely "skeletor" look where people can actually tell you have AIDS because you look like death warmed-over at best. I started out a thin man to begin with but after the years of AIDS struggling with vomiting, diarrhea, and wasting. trying to keep any fat on my body has been the challenge. I have had shrunken cheeks and the lack of fat around my temples (making little concave depressions there, also the issue with headaches when wearing sunglasses) for 20 years. I guess that's why I'm interested but don't understand lipoatrophy. Too be honest, my face looks like I've been suffering from that since I was 14 or so.

Not to mention the lack of fat elsewhere on my body. No ass means all chairs hurt to sit in. Every time I bump into a door frame I bruise and my bones absorbs the shock. I never walk barefoot, as socks at least provide some sort of cushioning effect. It's hard to explain how having no fat insulation makes it so easy for your limbs to "fall asleep" or go numb because it's so easy to pinch the nerves. It was terrible trying to stay warm during the OH winters when my low body fat meant my core temp would always be lower than most of the people around me. (skinny people just naturally freeze sooner LOL) I've gotten so tired of hearing about weight issues, and nowadays anytime an overweight person bemoans their body image to me I go into my diatribe about how being underweight has just as many problems too.

I'm finally in the right weight/height range because of the 10 lbs I put on since moving to SC almost a year ago. Although I'm still on the low end of that range, it has been such a blessing to have these few extra lbs of padding.
leatherman (aka mIkIE)


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

Offline Dachshund

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Re: Poz Face
« Reply #9 on: July 26, 2010, 02:06:34 PM »
I think Mr. Petrelis explains quite clearly what he is talking about. If I were to meet him for the first time (having been around da AIDS for almost thirty years) I would instantly think he had AIDS. I also think (myself included) that we sometimes hope it's just the natural aging process. It's not and we all know it.

I've been a bit lucky when it comes to "poz face" but the loss of fat on the bottom of my feet is almost intolerable. Working 6-8 hours a day on my feet, five days a week is excruciating. Throw PN into the mix and I wonder how I'm able to do it at all. Try explaining to someone your feet hurt because there's no fat on the bottom of your feet. Oh well.

Offline BT65

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Re: Poz Face
« Reply #10 on: July 26, 2010, 04:51:20 PM »
While I don't have "poz face," I sure have "poz gut," and the loss of fat in the feet.  And you all know I've had PN for a long time, being on 900 mgs of Neurontin 3 x a day.  So, my feet go from numb to feeling like they're going into a light socket.  I can't explain it to people who don't understand. And with having diabetes also, I try to take watch of my feet. 

My gut, no matter if I diet or not, won't go away.  Like Joe, I have a fairly smaller sized waist, but then it's like someone stuck a basketball into my gut.  Having people ask if I'm pregnant is a bit embarrasing (for both of us).  My legs are super-thin, and look like they're not even real compared to my gut size.  I don't know if that makes any sense. 

I've learned to wear bigger shirts, to try to hide the enormous gut, so it doesn't look so strange.  Sometimes I think the looks don't bother me as much as the painful feet do, but then again, sometimes the looks are distressing.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline veritas

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Re: Poz Face
« Reply #11 on: July 26, 2010, 05:47:52 PM »
BT65,

Did you ever try Acetyl-L-Carnitine for PN pain? It should help with the pain, however, the numbness remains. Here is a clinial trial :

http://www.ncbi.nlm.nih.gov/pubmed/16519785?ordinalpos=1&itool=PPMCLayout.PPMCAppController.PPMCArticlePage.PPMCPubmedRA&linkpos=4

Pros: Pain reduction, no interaction with meds. cons: cost, numbness remains

I use it myself and have had no pain for 4 yrs.

v

Offline Papillon_44

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Re: Poz Face
« Reply #12 on: July 26, 2010, 07:10:32 PM »
Hi, I'm curious what medications you have been taking that have caused the issues you all describe in your posts?  Do you think it's the HIV related or do you think it is the types of medications  you have taken over the years that have caused your physical changes?  I'm a newbie here- just started taking medicine after 23 years...  Scared a little.
Papillion_44

Offline jm1953

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Re: Poz Face
« Reply #13 on: July 26, 2010, 10:53:16 PM »
A hard thing to claim sometimes.

http://andrewsullivan.theatlantic.com/the_daily_dish/2010/07/poz-face.html

This article touched me in that it pretty much describes my life almost 24 years positive, the past 14  officially diagnosed with AIDS.  Even though the meds are keeping us alive, for me, getting older, mystery skin conditions and illnesses cropping up all the time, and trying to LOOK somewhat normal through having Sculptra twice a year, testostorone and nandrolone injections every two weeks, and working out as I can.  But I've notice during the past year my energy is zip, I don't want to make commitments to friends because I usually can't keep them, and thus finding, naturally, fewer and fewer call any more.  Even my family with the exception of my father have put me on the backburner.

But, trying to look somewhat normal, as superficial as this sounds, and not sick is I guess my own personal choice, and it seems to be a battle I'm beginning to lose.  None the less, so much said in this article I related to and wanted to say thank you kind of knowing many of us are experiencing much the same thing.  One of the reasons this forum is so invaluable.

Best,

SeattleJeff
Positive 25 years. 7/21/2012 Current CD 4: 780 Viral load: less than 50. 38 to 40%
Current drug regimen, Isentress, , Emtriva, Sustiva Wellbutrin, Klonipin, Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

Offline OneTampa

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Re: Poz Face
« Reply #14 on: August 02, 2010, 02:35:13 PM »
Very good discussion in this thread.  

I hit 25 years HIV positive this year.  Had facial wasting for 10 years.  And like Ms. P. checked out what came on the market, but just settled in to the situation such as it was and went on about my business including going to work everyday.  I then decided to get fillers three years ago starting with Sculptra while unemployed for the first time in my adult life - for about six months.

I had very good response to the fillers.  My doctor said that one thing going for me was that I have "thick skin and an aggressive natural collagen producing response".   I had a touch up with Radiesse at the temples earlier this year and remain pleased.

I don't yet have the issue with my feet although sitting on a hard surface for an extended length of time is definitely uncomfortable.

You may find the link below helpful as I checked one similar years ago.  I like the way the information is layed out with Pros and Cons of different fillers--permanent and temporary.  Also, clearly like our meds, responses may vary by persons and conditions:

http://www.thebody.com/content/art47327.html
« Last Edit: August 02, 2010, 05:47:34 PM by OneTampa »
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