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Author Topic: A bleep of pain  (Read 3399 times)

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Offline Dragonette

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A bleep of pain
« on: September 02, 2007, 11:22:02 AM »
so, I'm having this productive day, cleaning up the house, going to the gym for the 2nd time in a row. I am on one of the cardio machines when this guy that I know from this gym approaches me. This guy is a real gym rat, he is huge, he trains at least 5 times a week, 3 hours at a time, and is a member at two gyms. I used to talk to him a while back and he gave me tips on training but I started avoided him cos he was wierd. I can't recall each wierdness, but one example was him commenting on a woman who was training "look who's had a boob job. You know how I can tell? They don't move when she moves". Yes he wierded me out. But today I was on the machine and he approaches. "You lost weight". Me:"thanks, but I don't think so". He: "your face, your face is very skinny". I kind of avoid pursing this topic, we make some boring smalltalk for several seemingly long minutes, and then he goes to it again. "But you did lose wieght, around your cheeks".

Then I tried to shake it out of my mind and couldn't. When I finished I looked in the mirror, there was this huge blue vein just circuling my eye, starting at the bottom and going up through the temple to the side of my forhead. I know I have just been training, but I have never seen it before. I know I have "shadows" at the sides of my forhead and below and above my eyes that didn't used to be there. I know he is a just a wierdo, but he is a correct wierdo. I know my face is different. And even though the last specialist I saw said that I have a chance of 5% for lipo on my combo, which is the "best" available (Epivir+Viramune+Viread) I can't deny that my face changed.

So what's left but to pick up a pack of cigarettes on the way home from the gym and swallow the tears?
« Last Edit: September 02, 2007, 11:24:03 AM by Dragonette »
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline HealthyMomma

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Re: A bleep of pain
« Reply #1 on: September 02, 2007, 11:51:02 AM »
First of all that guy does sound like a total weirdo! Second of all, I am so sorry! Its so funny how people can make stupid little comments and not realize what they are saying makes us want to cry. Big hugs to you! (I bet you are still beautiful!)

Offline Dragonette

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Re: A bleep of pain
« Reply #2 on: September 02, 2007, 11:55:05 AM »
Thanks Nik

funny, I was just going to respond to your post on the "HIV for life" thread. It cheered me up. Usually I am thankful, and that's what I was doing, minding my business...

"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline MOONLIGHT1114

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Re: A bleep of pain
« Reply #3 on: September 02, 2007, 12:06:31 PM »
Hi Drag~

I go through this shit ALL of the time -- with strangers, with acquaintances (esp people who work at non-HIV doctor's offices) and with friends.  With me, they look at the veins popping out of my arms and say "Wow!  Do you work out?" 

On a good day, when I am feeling confident and emotionally stable, I reply, "Nope, I don't work out, this is just how I am,"  and I wait for the confused look on their faces.  Its kinda like a game to me.  On other not so good days, or with people in the medical field who just won't SHUT UP, I reply,"Its a side effect from meds that I am on."  To date, no one has asked WHAT meds I am on, whether these people are in the medical field or not, I don't think that they could possibly fathom that meds could do that to someone.  On other days, I will tell inquiring medical workers that its a "side-effect from my HIV meds."

It happens ALL of the time because of my arms.  My face, I feel, is still somewhat wasted, too.  Its longer now, whereas, being Polish I used to have a very round face, with full cheeks. 

I know this is a touchy subject, but try to find some light in it.  You say there are only subtle changes in your face?  Although my cheeks appear more "hollow" than they used to, I look at it as me having "bitchin' cheekbones" now.  I disclosed to a guy online earlier this year and he said he liked the "drawn look."  I couldn't believe it.  Its just that you and I and everyone else dealing with these changes, well, WE see the difference cause we know what we looked like before. 

Maybe I'll post some pics here, but I really looked bad from Zerit (d4T) a few years back before I went off of it.  I am on Truvada and Sustiva now, and I guess the Truvada may be doing something, I don't know anymore.  Maybe its just left over from the Zerit.

Hang in there and smile, I know this is very difficult.  To think back to the days when I would've given anything to look thinner, and now we have to deal with this crap.  I'm here for you.

~Cindy

The dates are under the pics: 2002, 7/4/05, 2/24/07 and 8/14/07.  The first pic is before the Zerit took effect.  I think part of it is getting older, but I don't know.  I was 32 in 2002 and now I am 37.  The third pic (2/24/07) was taken at the same time as my avatar pic.

BTW, I stopped the Zerit in Oct. 2005 and saw some improvement with my face in late 2006....

[attachment deleted by admin]
« Last Edit: September 02, 2007, 12:36:46 PM by MOONLIGHT1114 »
HIV+ since '93, 1/12 - CD4 785 and undet.   WOO-HOO!!

Offline Dragonette

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Re: A bleep of pain
« Reply #4 on: September 02, 2007, 12:11:21 PM »
Thank you so much Cindy.

I might email you some pics later on.

Big hug
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline northernguy

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Re: A bleep of pain
« Reply #5 on: September 02, 2007, 12:14:22 PM »
I know how you feel, even without meds.  I've had a few people say to me, "oh you've lost weight". Some even single out the face.  Thing is, I'm actually up about 5 pounds in the 18 months since diagnosis.  But it seems to be settling in my belly and away from my face.  I think I read somewhere that HIV alone can cause some body changes, even if your numbers are OK.

PS.  Cindy, you look great in your pictures.
Apr 28/06 cd4 600 vl 10,600 cd% 25
Nov 8/09 cd4 510 vl 49,5000 cd% 16
Jan 16/10 cd4 660 vl 54,309 cd% 16
Feb 17/10 Started Atripla
Mar 7/10 cd4 710 vl 1,076 cd% 21
Apr 18/10 cd4 920 vl 268 cd% 28
Jun 19/10 cd4 450 vl 60 cd% 25
Aug 15/10 cd4 680 vl 205 cd% 27
Apr 3/11 cd4 780 vl <40 cd% 30
Jul 17/11 cd4 960 vl <40 cd%33
April 15/12 cd4 1,010 vl <40 cd% 39
April 20/12 Switched to Viramune + Truvada
Aug 2/12 cd4 1040, vl <40, cd% 38
Oct 19 cd4 1,110 vl <40 cd% 41

Offline aztecan

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Re: A bleep of pain
« Reply #6 on: September 02, 2007, 12:16:16 PM »
Hey Dragonette,

I get this same type of thing too, which is odd since I am a guy.  ;)

But, because my body is somewhat oddly shaped, I get the stares, etc. I had one guy tell me I should pay more attention to my posture.

I asked him if he wanted to rub my hump. He stammered something and walked off.  ::)

There are jerks (and weirdos) everywhere. Don't let it get you down, hon.

HUGS,

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

Offline Dragonette

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Re: A bleep of pain
« Reply #7 on: September 02, 2007, 12:21:19 PM »
I asked him if he wanted to rub my hump. He stammered something and walked off.  ::)

you made me laugh out loud. Many thanks
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline MOONLIGHT1114

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Re: A bleep of pain
« Reply #8 on: September 02, 2007, 12:24:20 PM »
I asked him if he wanted to rub my hump. He stammered something and walked off.  ::)

OMG, I snorted when I read that, Mark.  Good of you to lighten up the mood around here.  I have a "hump" right on my tailbone which protrudes out slightly, definitely out further than my flat lipo butt.

Um, I'm not gonna ask anyone if they want to rub it.....well, maybe Drag can, we'll think of it as as research, lol!  ;)

~Cindy
HIV+ since '93, 1/12 - CD4 785 and undet.   WOO-HOO!!

Offline gvolts5

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Re: A bleep of pain
« Reply #9 on: September 02, 2007, 12:25:02 PM »
Glad to hear you're losing weight and glad someone noticed!  

John


Offline Miss Philicia

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Re: A bleep of pain
« Reply #10 on: September 02, 2007, 12:31:02 PM »
Dragonette -- I'm feeling for you right now.  I've been where you are it's really not a pleasant place, the first time someone you know (whether you know them well or not) makes a comment about physical changes in your body and/or face.  From what you wrote you already were seeing these changes but probably (like I did for a while) pushed them to the back of your mind whenever possible.  An event like you just had can do things in your mind, so I hope you don't get overly depressed.

The first event like this for me was wretched:  I was at a somewhat upscale gathering of fashion industry people and a boyfriend from around 8 years ago just came up to me and says "Hello (no small talk) -- Are you sick?" ("sick" of course in gay parlance meaning "AIDS").  Forget the fact that I'd probably only run into the Cuban blabber mouth three times since we went out (he was not even a serious boyfriend, just a brief fling)... it was really startling to hear.  The worse thing is that considering the really appearance-centric aspect of being lodged in a fashion industry party I immediately assumed everyone I knew was looking at me and thinking "AIDS!"  Needless to say I quickly left.  I think a month later even my boss at work made a comment asking if I was sick, though when he said it it just mean "sick" and not "AIDS" because he was straight. 

Anyway, it all happens overnight seemingly.  One tries to be stoic about these things but I found it really hard.
"I’ve slept with enough men to know that I’m not gay"

Offline Dragonette

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Re: A bleep of pain
« Reply #11 on: September 02, 2007, 12:49:35 PM »
Hi Philly,

Thanks for sharing this sad story. You are right I do try to push it away, and then it creeps back up. I need to accept it, and I do accept what has already happened. I am just afraid of the future. How far will it go. That's the awful bit.

When I look in the mirror, I just don't enjoy it anymore. I know a lot of it is in my head and I imagine things too, like people looking at me. I wish I could regain a healthy appearance. This is the classic thing isn't it? Your health improves while your appearance increasingly looks unhealthy. This thing with the vein did my head in. It definately wasn't there before.

since I became aware of the issue, I notice people with lipo quite often. I notice them and they notice me noticing them and there is a sort of wordless communication going on. I don't think all these people are poz, I know other meds can cause lipo too.

I don't know how all the people on here have handled it, I really don't. The funny thing is, I can see people with lipo and still think they are beautiful in many cases. But it my case I have so little facial fat as it is, that I am terrified of further outcomes.
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline Miss Philicia

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Re: A bleep of pain
« Reply #12 on: September 02, 2007, 01:12:23 PM »
Dragonette, I have "the vein" thing too and that was from early on.  Most people don't realize that there is a small layer of fat surrounding the cranium and when most get lipo it substantially disappears too.  In fact, there are many days where simply wearing a pair of sunglasses causes me to have a bad headache because there's no padding where the ear section of the sunglasses comes in contact with my head.  I just had this happen yesterday.

Has you doctor suggested maybe switching meds around to something that might have less effect on all of this, certainly as you're just beginning to notice your lipo and before it gets to stages 3/4 and is more severe?
"I’ve slept with enough men to know that I’m not gay"

Offline Dragonette

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Re: A bleep of pain
« Reply #13 on: September 02, 2007, 01:20:06 PM »
In 1.5 years of being on meds, I have switched combivir+ sustiva to sustiva+viread+epivir and finally to viramune+epivir+viread. It was not specifically for lipo, although I admit I was relieved to be rid of azt, but the reasons were anemia (combivir) and mental sides (sustiva). My doctors insist that the current is the least dangerous combo in terms of lipo (and PN, another complaint, though mine begin before meds), so I don't know what else I could switch to. I don't feel that I have any options...
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline SASA39

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Re: A bleep of pain
« Reply #14 on: September 02, 2007, 03:03:36 PM »
But on a lighter note hewas/is a weirdo...............

But what can one say when a neighbour say to him in a friendly note :
"Hey you look thinner , loose some pounds especially in a face "
Me : ? ?  I do not think so..............
He : "yes , yes you did..............."

Or when a friend say to him : " You look so down . Are you ill ? "

One can only say with a  big smile  ;D :"Thanks for the compliments.It is due to my wife/boss/GF/BF/loud neighbours/money loosen on footbal bets/ etc...............
Oct.     `06.  CD4=58  ?    %       VL not perform. ?!?
25.Dec.`06.         203       14        VL= 0
29.May.`07.    broken device        VL=1363
20.June`07     broken device        VL=0
25.Dec `07  CD4=582                  VL=70
14.May `08  CD4=448
29.July `08                                  VL=0
26.Nov `08  CD4=674                    VL=179
16.Mar `09  CD4=554                    VL=0
19.Jan`10 CD4=715               
03.Mar`10                                    VL=0
24.Aug`10 CD4=524                     VL=0
04.Dec`10 CD4=626                     VL=0
15.Sep`11                                   VL=93
17.Nov`11                                   VL=0
05/26 .Jul`12 CD4=713                 VL=0
28.Nov`12 CD4=916                     VL=0
09.May`13                                 VL=0

Offline Dragonette

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Re: A bleep of pain
« Reply #15 on: September 02, 2007, 03:12:50 PM »
I don't want to come off as whining about how I look, I look perfectly fine, if somewhat different. It's just that you go about your business, and you don't expect this insistance from a stranger that Yes, you did lose weight in your face. He probabaly didn't mean anything (unlike the guy in Philly's story), but it sure hit a raw nerve.

I played it cool too at the time, it is inside that I was crying...

(a good answer to your insistent neighbour would be "and you also look different... your nose looks longer"  :))

"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline Miss Philicia

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Re: A bleep of pain
« Reply #16 on: September 02, 2007, 03:39:19 PM »
Drangonette, whine all you like about this issue.
"I’ve slept with enough men to know that I’m not gay"

Offline water duck

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Re: A bleep of pain
« Reply #17 on: September 02, 2007, 04:20:28 PM »
Why don't you tell the sweet gentleman:

Sweetheart, i am a fan of Cher, just had my face lifted like her !!

Oh , why , cry inside , cry here, so we can all cry together !!
( let's see who shall scream the loudest !!  ;D  we can have fun , while at it !!)
JUST don't let it be your nightmare !!

Wd

Offline aztecan

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Re: A bleep of pain
« Reply #18 on: September 02, 2007, 04:24:49 PM »
You know, Alan (Alanbama) and I had a brief discussion like this recently. We were discussing how we sometimes have to settle for body shape changes in order to remain on a regimen on which we actually feel good, or at least can tolerate.

Alan said, "Everything with this disease is a trade-off."  I think I quoted him correctly, and I agree.

That doesn't make the encounter with the weirdo any more pleasant or the suddenly noticing the changes any easier.

All I can say is vent away, dear lady.

HUGS,

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

Offline zeb

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Re: A bleep of pain
« Reply #19 on: September 02, 2007, 04:50:13 PM »
Hey Dragonette,

I don't know if there were changes since we had a bite. But you look great! Don't worry!
And don't worry about this weirdo, he's one of many. Just focus on the right stuff: think about yourself and your BF!

Take care!

Zeb

Offline DanielMark

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Re: A bleep of pain
« Reply #20 on: September 02, 2007, 05:13:50 PM »
Dragonette,

I am sorry this clod made such a insulting comment to you, but combined with the comment about the other woman, I suppose it reveals the nature of his mind. His obsession with his body is probably all he has in life.

There will always be clods in this life. The way I see it, they exist to exercise our strength of character.

Remember: “No one can make you feel inferior without your consent.” (Eleanor Roosevelt)

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Dragonette

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Re: A bleep of pain
« Reply #21 on: September 02, 2007, 05:18:44 PM »
Thanks everyone, I am smiling again and it's definately b/c of all of you who took the time and kindness to respond.

Till the next klootzak (a-hole in Dutch, but literally means scrotum)...

 8)
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline zeb

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Re: A bleep of pain
« Reply #22 on: September 02, 2007, 05:33:57 PM »
Hey Dragonette,

it's not only that I took the time, I'm also serious!
You look great! And yes of course I understand your worries. But don't worry about this!
I know, it's easy to say. But please don't worry about this!

Take care!
Zeb

Offline Peter6836

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Re: A bleep of pain
« Reply #23 on: September 02, 2007, 06:33:34 PM »
Hey all,
I do not give a shit what anyone says all of you are gorgeous and oh yeah Mark, I will rub your hump if you will rub mine>>

Offline Peter6836

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Re: A bleep of pain
« Reply #24 on: September 02, 2007, 06:34:57 PM »
Oh hell Mark you do not have to rub mine But please let me rub yours!!!   

Offline cjc

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Re: A bleep of pain
« Reply #25 on: September 02, 2007, 09:11:39 PM »
so, I'm having this productive day, cleaning up the house, going to the gym for the 2nd time in a row. I am on one of the cardio machines when this guy that I know from this gym approaches me. This guy is a real gym rat, he is huge, he trains at least 5 times a week, 3 hours at a time, and is a member at two gyms. I used to talk to him a while back and he gave me tips on training but I started avoided him cos he was wierd. I can't recall each wierdness, but one example was him commenting on a woman who was training "look who's had a boob job. You know how I can tell? They don't move when she moves". Yes he wierded me out. But today I was on the machine and he approaches. "You lost weight". Me:"thanks, but I don't think so". He: "your face, your face is very skinny". I kind of avoid pursing this topic, we make some boring smalltalk for several seemingly long minutes, and then he goes to it again. "But you did lose wieght, around your cheeks".

Then I tried to shake it out of my mind and couldn't. When I finished I looked in the mirror, there was this huge blue vein just circuling my eye, starting at the bottom and going up through the temple to the side of my forhead. I know I have just been training, but I have never seen it before. I know I have "shadows" at the sides of my forhead and below and above my eyes that didn't used to be there. I know he is a just a wierdo, but he is a correct wierdo. I know my face is different. And even though the last specialist I saw said that I have a chance of 5% for lipo on my combo, which is the "best" available (Epivir+Viramune+Viread) I can't deny that my face changed.

So what's left but to pick up a pack of cigarettes on the way home from the gym and swallow the tears?
                                                                                    What a ass. Sorry you had to deal with him. Someone made the comment . This is it.'
Dragonette,

I am sorry this clod made such a insulting comment to you, but combined with the comment about the other woman, I suppose it reveals the nature of his mind. His obsession with his body is probably all he has in life.

There will always be clods in this life. The way I see it, they exist to exercise our strength of character.



Daniel
                                 This part really rings true. Not sure if I agree with the quote so I took that part out but Daniel says it more eloquently than I could  hope you feel better.  Cristy    Edited so it will read properly                                                                       
« Last Edit: September 03, 2007, 06:53:51 AM by cjc »

Offline DanielMark

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Re: A bleep of pain
« Reply #26 on: September 03, 2007, 08:31:30 AM »
Thanks everyone, I am smiling again and it's definately b/c of all of you who took the time and kindness to respond.

Glad you're getting things into perspective, Dragonette. You are worth much more than the thoughtless things that slip out of some stranger’s lips.

Don’t let them get to you.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline BT65

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Re: A bleep of pain
« Reply #27 on: September 03, 2007, 07:54:09 PM »
You know Dragonette:
  You can't let people like that get to you.  They don't have a clue the hurt behind their words.  They sound like blubbering idiots when they talk (sort of like George W).  People come up to me and ask me how my "pregnancy" is going.  I just want to shrink into the walls sometimes.  But the fact is, I do have skinny arms and legs, and I do look pregnant.  Like Mark said, everything is a trade-off. 
   Glad you're feeling up.  Keep hanging in there.  You go girl!
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline xyahka

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Re: A bleep of pain
« Reply #28 on: September 03, 2007, 08:59:28 PM »
HI Sweety, you know... something similar happened to me last week. An ex boss (sister in law of a co worker) came to my office and the first thing she said when she saw me was

"Juan Carlos, tell me you are on a diet... you are so thin and your face is so skinny!!! what's wrong with you?"

I told her "yes i am on a diet". Although i am not. And i told her i had not loss so much weight.... she said i did. I said no, she said yes. So i let her be... she only has perceptions, cause since diagnosed i have been monitoring my weight and i know i haven't lost much. That's why i placed in my signature, also i am not on meds. So as you can see... not everybody is right about these things, some people only have perceptions (specially because her sister-in-law spread the news i might have aids when i first seroconverted).

Mom had a nightmare during weekend... she said in her dream she went to the living room and saw me standing... trembling... extremely skinny... unable to speak... and holding a dollar in my hand.... trying to say something but unable to do it. She then came close to me and hugged me and i started crying.....

I felt extremely cold while she was telling me the dream... and scared... too much talks about weight in the same week, but i tried to let it go... fear is something we must learn to live with and not to suffer from. I think all we can do is to watch out our bodies and try to reduce the changes the most we can, while learning how to feel confortable with us again.

They say if you feel good, you will look good. I believe it and i also think a body is not enough to enclose or represent our big and shinny souls!.

Send you strong hugs!! and kisses!!!

/edite for typo... as usual/
« Last Edit: September 03, 2007, 09:05:27 PM by xyahka »
13/03/07 1er diagnóstico /Peso: 79kg
19/04/07 CD4: 494 /CViral: ?? /Peso: 80kg
19/07/07 CD4: 659 /CViral: ?? /Peso: 79.5kg
06/03/08 CD4: 573 (después de meses muy deprimido) /CViral: ?? /Peso: 79kg
17/09/08 CD4: ?? /CViral: ?? /Peso: 84Kg
06/02/09 CD4: ?? /CViral: ?? /Peso: 85Kg /HCV: Neg /HBV: Neg.
07/03/09 CD4: ?? /CViral: ?? /Peso: 87Kg / Gym 3días/semana y Natación 2días/semana.
12/05/09 CD4: 470 /Cviral: ?? /Peso: 87Kg.
08/07/09 CD4: ? /CViral: ? /Peso: 77Kg.
09/12/09 CD4: 510 /CViral: ? /Peso: 78kg. No medicinas aún
10/01/10 CD4: ? /CViral: ? /Peso: 76Kg.
15/05/10 CD4: 320 /CViral: ? /Peso: 76Kg.
01/02/11 CD4: 291 /CViral: ? /Peso: 78kg.
05/05/11 CD4: 366 /CViral: ? /Peso: 78kg.
27/07/11 CD4: 255 /CViral: 138000 /Peso: 78kg.

Disfrutando y aceptando una nueva vida...

 


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