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Author Topic: A bad day  (Read 1281 times)

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Offline tommy246

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A bad day
« on: July 11, 2009, 04:43:17 PM »
Someone who i know today said half jokingly i look like ive got aids. It really shocked me and i laughed it off . They said i looked drawn in the face,i am 6ft 2 inches and weigh a fairly muscular 107 kilos ,i was 114 kilos this time last year. I was only diagnosed in december 08 and was negative in jan 06 ,my numbers are cd4  635  16 % 60,000 vl  . It has made me a bit paranoid and looking in the mirror i can also see where my face now goes in slightly just under my cheekbones is this just my weightloss or could i have lipoatrophy even though im not on meds.
I know alot of you have alot more serious issues than this and apologise if this seems trivial but i feel panicked as i am trying to keep my situation private.
To be honest i really need a good talk to someone as i feel as i am about to crack sometimes. i have never really poured my heart out to anybody properly about my situation since my diagnosis even though i have told my wife and brother,and even though i dont have many posts i am on here everyday reading posts it gives me strength and stops me feeling alone.
Thanks for listening.
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline mecch

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Re: A bad day
« Reply #1 on: July 11, 2009, 05:01:21 PM »

They said i looked drawn in the face,i am 6ft 2 inches and weigh a fairly muscular 107 kilos ,i was 114 kilos this time last year. I was only diagnosed in december 08 and was negative in jan 06 ,my numbers are cd4  635  16 % 60,000 vl  . It has made me a bit paranoid and looking in the mirror i can also see where my face now goes in slightly just under my cheekbones is this just my weightloss or could i have lipoatrophy even though im not on meds.

When was the last time that person saw you?
Maybe you are tired and stressed and depressed - this can show on a face too, and you've had a hard few months.
Its very unkind to say "you look like you've got AIDS" - totally stereotyped and dated...

I think you should tell your brother or your wife this story, and ask for their frank opinion.  It might be you just look a little haggard from the stress.  You don't have aids and if you've only been positive less than two years, your body can't "look like it has aids"....

Also, you can ask your doctor to monitor you for facial lipatrophy, its part of the doctors job to watch for this. 

To be honest i really need a good talk to someone as i feel as i am about to crack sometimes. i have never really poured my heart out to anybody properly about my situation since my diagnosis even though i have told my wife and brother,and even though i dont have many posts i am on here everyday reading posts it gives me strength and stops me feeling alone.
Thanks for listening
.

If its not so cool to do with your wife, then pour your heart out to your brother, that is what brothrs do for each other. 
You could also get a therapist or join a support group. 
Or you could disclose to a friend.
Or, you can certainly pour your heart out here in the forums!!! 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline CallMeSid

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Re: A bad day
« Reply #2 on: July 11, 2009, 05:03:58 PM »
Dang.  I'm so sorry you had to experience that person's ignorance and doubly sorry that it's thrown you for a loop.  I'm sending good vibes and a big manly cyber-hug your way (I'm about the same size as you).

Based upon what you've described, it sounds like this other person (I'm assuming it's a guy?) was reacting to your weight loss.  114 kilos to 107 kilos is about a 15.4 lb difference.  I know that when I gain or lose weight it shows up first in my face.  Based upon your current CD4 count and your relatively recent infection, it does NOT sound like you're experiencing the sort of facial wasting that sometimes occurs in more advanced disease.

It really does sound like you could benefit from somebody to talk to.  Getting this diagnosis impacts us all in all sorts of ways.  It definitely is very beneficial to have somebody with whom you can let it all hang out and just get things off of your chest.  Sometimes that person is a professional with training and experience working with people with HIV.  Other times, it's most helpful to turn to a peer who has that always-valuable first-person perspective.

Feel free to PM me if you'd care to "vent" more privately.

I'd like to think that this acquaintance of yours will soon be educated on how hurtful his comment was.  When I first read your post, I was quite pissed off, but upon reflection realized that he was probably speaking from a position of ignorance as opposed to intentional malice.  For example, I know I have a tendency to use the "R-word" when encountering a situation or person that I find to be exasperatingly stupid.  It's been pointed out to me that it's "not cool" to use that word because I don't know who within earshot has a family member, etc. living with a developmental disability and the challenges it presents.  Chances are good that your acquaintance would be similarly horrified and humbled if he knew how his poor choice of words ruined your day.

Hang in there.
07/2006 HIV-negative
06/2007 HIV-positive
07/2007 CD4: 795 (40%), VL: <50
09/2007 CD4: 629 (43%), VL: 895  (~2 weeks after measles/mumps/rubella booster)
12/2007 CD4: 854 (45%), VL: <50
03/2008 CD4: 880 (45%), VL: 151
12/2008 CD4: 943 (46%), VL: 116
05/2009 CD4: 865 (44%)  VL: 107

Offline BT65

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Re: A bad day
« Reply #3 on: July 11, 2009, 05:12:09 PM »
Tommy, I would highly suggest getting a good therapist.  Your ID doc or your local Aids service organization should be able to supply with a name.  Good luck.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline next2u

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Re: A bad day
« Reply #4 on: July 11, 2009, 06:01:41 PM »
that sucks tommy,

sounds like your friend was being an ass.

yeah, from time to time i analyze my face and feel as though i have obvious "hiv" features. then i stop, look at old photos and pay attention to the people around me. after this i find that my face is no more stricken than those of my coworkers and others and that my face has not changed more or headed down road. i find myself concentrating to much on certain spots. then i notice that everyone has those features, ive just spent a lot of time looking at the changes on my face and obsessing over things no one else would really notice.

certain days are worse than others. especially when im down, then i really can see the gauntness in my face. i lost 10 lbs recently (184 -> 174) and people started commenting on my weight loss. im about 5'9 and consider myself height weight proportionate. my cheeks and the areas under my eyes have also thinned, but it has not been dramatic or out of the norm.  (when i was younger i weighed less, i finally broke 160 in my late 20s and have been steadily gaining weight since then).

our bodies and faces change over time. if this continues to bother you i would follow betty's advice and seek out a therapist or an ASO. like the person above her said, you can also have your dr monitor your facial fat loss.

and on a side note, most people can't recognize hiv/aids face. it's only those of us who are concerned about it that see the signs first. 

enjoy your day and i hope things get better for you : )

btw, below is a photo i took right now for you. my face ain't what it used to be -- for better and for worse! and the smiling thing def helps  :D

midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3
jan14 cd4 813; vl ud; cd4% 42.8
may14 cd4 783; vl *; cd4%43.5

Offline Rev. Moon

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Re: A bad day
« Reply #5 on: July 11, 2009, 07:00:49 PM »
I'm sorry to hear that you are going through this without all the support that is needed.  As Mecch said you may be under too much stress and this is causing that inappropriate comment to affect you in the way it did. 

Sometimes people are insensitive and ignorant in their statements/jokes simply because they don't imagine that what they say could be happening to someone who is close to them.  Their words have no value or real meaning; he/she probably said such a thing because he does not have knowledge of anyone who actually has HIV (or AIDS). 

Everyone here has a lot more experience with this life change, and they have said it better than I could: you do need someone that you can turn to (a therapist, a support group, a friend, this forum).  Letting the fears and thoughts be spoken is crucial to your health.  Don't fight this in silence or on your own. 

Hope your weekend gets better. 

Wish you the best in health and all respects. 

M.
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline tommy246

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Re: A bad day
« Reply #6 on: July 15, 2009, 11:19:52 AM »
Hi thanks for the replys i am going to take your advice and maybe see a therapist,and or join a support group do you find these very helpful? .My problem i think is the fact that i just need to deal with my anxiety and worry.I think i am just trying to carry on as if nothing has happened and putting to much of a brave face on things . After my diagnosis in dec 08 i didnt tell my wife or brother until april 09 as she had seroius health worries at the time and apart from a couple of brief chats weve not really discussed it much since is that odd ?
My main worry is the fear of the unknown i am 48 and have a 9 year old daughter who means everything to me i just feel so guilty thinking what a bad dad i am by bringing this into her life and thinking that i am not going to be there for her.Another major fear of mine is that the small community i live in will find out about my hiv.( is it possible to keep it a secret for many years from close friends and family?),my parents are in there seventies and i really dont want to tell them or my daughter untill shes an adult.
I have decided to move to a smaller house to make sure theres less financial worries in the future and that piles on the guilt, and then i really need to face up to my marital situation.We have no sexlife for many years as i prefer transexuals and always have done since my early twenties its something i have tried to surpress for many years but i cant its impossible i was selfish to get married but we get on ok all considered and are there for our daughter i guess.
Well i feel better writing all that down maybe thats my first positive step.
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline decayingsinner

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Re: A bad day
« Reply #7 on: July 15, 2009, 04:57:28 PM »
damn, sorry about the obvious and the marriage. I have actually gained several pounds since my diagnosis. Gaining weight is something I could never do.  I wish you the best man.

Offline BT65

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Re: A bad day
« Reply #8 on: July 15, 2009, 06:05:05 PM »
Tommy, yes, therapy does help, especially when you want to deal with your anxiety.  I wouldn't suggest going it alone.

I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline positivmat

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Re: A bad day
« Reply #9 on: July 15, 2009, 08:30:25 PM »
I like therapy. I'm 43 and was infected nov 08. My ARS was bad and at a dec 10 meeting, people commented that I looked worn down and thin in the face. After I was diagnosed on 1/30/09, I was completely stressed. By that time I had lost a considerable amount of weight. Then my skin and hair got wierd. Anyway, at that point I felt really bad about myself and how I perceived myself to look.

I started Therapy and meditation and support groups. I found it helped me immensely. I go weekly to therapy. I have found the hardest part has been my head getting wrapped around what I thought I lost. Getting to talk about it has been very healing.

Hope you get support.

Matt

 


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