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Author Topic: What is the biggest personal challenge you face regarding your hiv status?  (Read 23263 times)

0 Members and 1 Guest are viewing this topic.

Dan J.

  • Guest
I guess with me it's trying to keep a positive attitude, fighting depression and anger at myself to not taking care of me 20+ years ago. Lately I've been missing meds. I haven't taken a dose in 5 days. I know I need to, but I just don't want to. Sometimes I feel like a need a break from the abdominal discomfort, PN,  & other side effects. I don't know when I will take another dose of meds. Maybe Friday, maybe not.

Dan

Offline ademas

  • Member
  • Posts: 1,151
Battle fatigue is my biggest challenge.
I have a bipolar brother who needs me, and a dog who adores me. 
If it weren't for them, I don't know that I wouldn't have opted out by now.

(Dan...take your meds, or take a break from them altogether!  I know you know this...)

xox

Offline David_CA

  • Member
  • Posts: 3,246
  • Joined: March 2006
Dan, I hope things improve for you soon.  Personally, I'm afraid -almost paranoid- about missing doses.  I've only been on meds for 5 months, but I haven't missed any so far.  I felt so crappy when I had that nasty PCP a while back and do not wish to repeat that experience.

As to the biggest personal challenge, I guess it's not getting overwhelmed by all this.  I'd not had any health concerns until a little over a year ago when I found out my HIV status.  It's was a shock to find out that I really wasn't as invincible as I've always felt I was.  I try not to think of any of this as permanent, although I know it is.  It helps keep me from dwelling on it all.  Take care.

David
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
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline GSOgymrat

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  • Posts: 5,002
  • HIV+ since 1993. INTJ
It probably sound shallow but dealing with lipoatrophy has been my biggest challenge. I handled the other symptoms and side effects, the uncertainty about the future, the clinical trials, the medical bills, my partner being ill, etc with less difficulty. Because I've kept my HIV infection a secret from practically everyone the lipo stressed me out. When coworkers pulled me into their office and asked if I'm feeling okay, when family members made comments about how thin I am, when strangers made rude comments it all felt like a personal attack. I'd have to quickly think up an excuse to cover up the secret. It suck when you catch people talking about you behind your back. Part of me would like to just tell people and be done with it but I have my partner's feeling to think about. It's not my secret is our secret.

So if it is such a big secret why am I posting photos? Because I felt the need to share my lipo experience with other people who are going through it. Because I'm not ashamed of having HIV. Because if people find out about it they will just have to deal. My partner was not happy when I posted my lipo photos but since doing so I've received emails from over 300 people from literally around the world thanking me for doing so. He has since conceded that I did the right thing.

Dan J.

  • Guest
It took  a lot of strength for you to post your lipo photos. Mucho respect to you. thanks for sharing.

 :-* Dan

« Last Edit: April 26, 2007, 02:12:40 PM by Dan J. »

Offline jimw

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  • Posts: 109
Whether or not to tell my parents.  I come up with a million reasons not to tell them, but I want to, I want them to know, but I don't want them to worry about me (reason #1).  My mom's best friend's son died back in the beginning of the epidemic from AIDS (PCP) and I remember how much that upset her and I am afraid that she will think that my fate is the same as Steven's.  J. 

Offline puertorico2006

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  • Posts: 957
Lipo scares me too....Im not on meds but I know the day will come...

that and social rejection......

but honestly so far my fears have "not come true" because i havent been rejected so i guess im lucky  ;D

I havent had any health issues to deal with yet thankfully but im sure if i did then i would be worried about other things...
Infected Probably: may 2005
Diagnosed: 11/2006

11/28/2006 CD4:309 / VL: 1907 No meds yet
12/27/2006 CD4:339/  VL:1649 No meds yet
  4/28/2007 CD4:550/  VL:1800 No meds :-)

Dan J.

  • Guest
Whether or not to tell my parents.  I come up with a million reasons not to tell them, but I want to, I want them to know, but I don't want them to worry about me (reason #1).  My mom's best friend's son died back in the beginning of the epidemic from AIDS (PCP) and I remember how much that upset her and I am afraid that she will think that my fate is the same as Steven's.  J. 

Jim,

You will decided in your own time when you feel it is right to tell your parents.  I am pretty sure your  parents would be sad and worry about you if & when you do  tell them, but from what I can gather in your post I am even more sure that they would be there to support you the best way that they would know how to.  I wish you the best, and you will find plenty of support here when you do feel the time is right to tell your family.

Dan
« Last Edit: April 26, 2007, 02:31:07 PM by Dan J. »

Offline jimw

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Jim,

You will decided in your own time when you feel it is right to tell your parents.  I am pretty sure your  parents would be sad and worry about you if & when you do  tell them, but from what I can gather in your post I am even more sure that they would be there to support you the best way that they would know how to.  I wish you the best, and you will find plenty of support here when you do feel the time is right to tell your family.

Dan

Dan, thanks.
I have been struggling with this for a while and picked up the phone a couple of times and called to tell them but ended up just talking about other things.  I just don't want them to find out some other way, as I am out to all my friends and some of my family, but they know my parents don't know.  thanks for the support, J

Offline sdcabincrew74

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    • My Manhunt account
Utter exhaustion.  That is my biggest challenge.  Granted I feel 1,000 times better than I did just before going into the hospital with PCP.  But an afternoon nap is almost a constant in my life these days. 
The difference between an overnight and a layover is luck!

Offline Matty the Damned

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  • Ninja Please
Treatment adherence. It's an enormous effort for Matty the Damned. Not the night-time dose, but remembering to take the morning dose.

Bugger. Which is what I've gotta do know. Ah, shit! Or did I already take the fucking thing?

MtD
(Who can never remember)

Offline Blixer

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Matty,  That's why I put mine in the weekly pill container set.  Then I can look and "know" if I've taken those buggers.  It is almost like automatic for me.  I wake up at 6 AM every morning and take those things.  Almost like a built in alarm clock.

Dan, I can understand not wanting to take the meds. I can understand wanting a break from the side effects.  I look at mine ever now and then and think... "you mean I have to do this for the rest of my life???"  And then I do it....

I think my biggest challenge is the social stigma that leads me to being a bit of a hermit.  I'm very shy anyway.  I do want to get back into the dating realm, but the disclosure issue really puts me off.  I'm afriad of rejection.
David
Diagnosed 1/9/06
8/27/2007 CD4 598, 29%, VL 58 (72 wks)
11/19/2007 CD4 609, 30%, VL < 50 (84 wks)
2/11/2008 CD4 439, 27%, VL <50 (96 wks)
5/5/2008 CD4 535, 28%, VL <50 (108 wks)
10/20/2008 CD4 680, 28%, VL <50 (132 wks)
Changed to Atripla in 2012
1/14/2013 CD4 855, 35%, VL <40

Offline cubbybear

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  • Posts: 510
  • Joined August 2005.
Mine is trying to get out of this funk I've been in since I was diagnosed and was very sick in 2005.  I've not been the same since, and trying to get on top of that and back to my usual self is the biggest challenge.  Right when I think I am back up there and come out swinging, I get KO'd again.  That's my biggest challenge since becoming HIV+.  I want my mojo back.
There's a bear in there!
Positive since 2000
Diagnosed 17/9/2005 CD4 35 VL 293,000
Meds 23/9/2005 Sustiva/Truvada
Currently CD4 232 VL Undetectable

Offline Matty the Damned

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  • Ninja Please
Matty,  That's why I put mine in the weekly pill container set.  Then I can look and "know" if I've taken those buggers.  It is almost like automatic for me.  I wake up at 6 AM every morning and take those things.  Almost like a built in alarm clock.

Hey Blixie,

Yeah I know. I'm gonna get one of those things next week when I see my GP, the Honourable Lady Jane.

MtD

Offline BT65

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  • Vegas baby!
The biggest challenge for me has been just being a woman with AIDS.  There's not a whole lot of studies on women and the special situations women with HIV  have always seem to go, well, for lack of better words, unstudied.   
     That, and the lack of support.  I don't know one other woman in my town who has HIV.  Not even in neighboring towns.  The two women I know who had died quite awhile ago. 
     Other then that, it's just something else to deal with...........
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline mjmel

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The biggest challenge was to stop the self-destructive lifestyle and thoughts of dismay. I abolished that messy mind set in the early 90's.
Recent 2 years: Acute facial wasting--which has been corrected.
Since 2000: Constant fatigue. I address that issue with vitamins/supplements and 5 mg. dexies to jump start my day.
Meds at 6 am/6pm: Even with the weekly med box I still forget to take my meds from time to time. Have forgotten either morning or night dose but never both. I don't freak out about it--no point in that kind of reaction.
« Last Edit: April 27, 2007, 04:41:59 AM by mjmel »

Offline xyahka

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  • Dance together!! aha!! aha!! I like it!!
Well.... my biggest challenge? there are lot (1 month and half diagnosed here...)

1. I have debts with my credit cards over 2000 usd and my current salary is not enough to pay them
2. Yesterday i got all my credit cards blocked until i pay those i am in debt with
3. I am getting paid 90 usd every two weeks and banks want me to pay something like 200 usd monthly (not leaving anything for food, transportation, etc).
4. I got water cut at home cause i couldn't pay it.
5. The fear of telling my older sister and the way she would react
6. The fear for lypodistrophy and that some day i will hit hospital bed (which will lead to my disclosure at work... even if i try to hide it, once disclosed i will be fired... common thing here)
7. The fear i can infect someone else (or perhaps already infected someone) and they will come back to claim what i did so... eventhough i wasn't aware of my status
8. I am affraid to cry, and depress since i have heard what it does to us....but sometimes i just need to do it.
9. Fearing to die in a pity way
10 Another thing hard to handle is the huge amount of pain i receive everyday... from professional sides, personal side, days like yesterday when i broke down and cry are becoming so usual...that sometimes i just can't stand them anymore...
11. It is difficult to get rid of the anger, frustration, and real hate i have towards life nowadays... i didn't deserve this... i know none does, but i always... always tried to be a good person... have my hands clean... never hurt anyone... and what i got? an hiv diagnosis.
12. Other hard thing is that I am 1 month and a half into this and i still don't know my first Cd4 results i will get them in two weeks. Don't even expect VL test, thats too expensive so they won't do it also there just ONE machine in the whole country able to do such test.

I try everyday not to lose the faith..... but days like yesterday i just doubted God worried about my situation... i just simply though "he must be playing on the other side... against me".

These are just few of the things i find hard to handle...and i am just a month and a half in this.... if what will come later will be worst.... i am not sure i can make it.

Juan Carlos
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...

Dan J.

  • Guest
Juan,

Just remember that this forum is here for you & that you are not alone in this struggle.

Dan

Offline BT65

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  • Vegas baby!
Juan:
    We're here for you!  All you have to do is make it through-one day at a time (I know that line is overused, but it works).
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline milker

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  • Posts: 4,034
  • Protected phone sex
I thought about this post a lot and I can't find a challenge for now. May be the fear of rejection, but this seems so selfish to me that I don't count it as a challenge. Maybe it will be when i'm rejected many times.

Juan, your blog was very positive, so it sounds like despite all those burdens you are able to have enough strength to overcome them. If you suddenly get overwhelmed you know where to call for help :)

Milker.
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

Now accepting applications from blowjob ninjas™

Offline Iggy

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  • Posts: 2,435
The biggest challenge for me is to lose the baggage that comes with having HIV;  I need my strength and focus in too many other areas than to worry about that which I can't control.

Offline SouthSam7

  • Member
  • Posts: 428
Depression for sure, but also physical fatigue.  Today on my way out of town I wondered if taking a med holiday would give me some energy back.  I almost fell asleep at the wheel even though I got 7 hours of sleep last night.

I was fine mentally when I was first diagnosed, but there are things you never think about until you find out you're positive and you've lived with it a while.  Like how draining keeping such a big part of your life secret from so many members of your family, your friends and co-workers. 

Yeah I'm glad I'm here - for the moment.  But sometimes I think what's the point of dragging it out, if I'm always tired and "living a lie".

Offline BT65

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  • Vegas baby!
Hey guy in Bama:
  What do you mean by "living a lie?"
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Pilot

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The hardest thing is keeping it a secret from everyone and I understand how someone might feel they are living a lie....but what choice does one have when if its found out it can be a bad situation gone worse.

Keeping it a secret, which I have successfully done for ten years and having to live in poverty just to get a bottle of pills each month....only in America...lol....but of course i keep paying into all the programs even though I don't qualify for any of them.

Offline allopathicholistic

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The biggest challenge was to stop the self-destructive lifestyle and thoughts of dismay. I abolished that messy mind set in the early 90's.
Recent 2 years: Acute facial wasting--which has been corrected.
Since 2000: Constant fatigue. I address that issue with vitamins/supplements and 5 mg. dexies to jump start my day.
Meds at 6 am/6pm: Even with the weekly med box I still forget to take my meds from time to time. Have forgotten either morning or night dose but never both. I don't freak out about it--no point in that kind of reaction.

Hugs to you. Fatigue sucks. Could you kkep us posted if you feel up to it? For me in 2000-2005 my biggest challenge was workplace disclosure. Since then it's been coming to grips mentally that most likely I can never return to my old industry in the same capacity, which allowed me my own apartment without roommates, spending cash, a sense of career stability, etc. Things are so very different now I feel like I'm living in a strange new world with new rules

Offline DanielMark

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Boy, that's a big question Dan. I'm not sure I can narrow it down to one biggest challenge, since new ones come along each day. Being vigilant against the desire to drink or drug to escape it will always be with me. Fortunately, I got wind that I was probably HIV positive during a routine exam at a Rehab Clinic I checked into in New Hampshire in December of 1987, so for eight months prior to my actual diagnosis I’d already had a good foothold in living without booze and drugs. If I didn’t have that I would be dead today. Period.

Fatigue continues to be a problem. For example, I just finished cleaning my bathroom and I needed to sit down and take a break. It seems absurd that housecleaning should leave me exhausted but it often does. Learning how to say “no” sometimes took me a long time as well, but I’m better at that than I used to be.

Emotionally it’s been a challenge at times, but I don’t suppose  any explanation is necessary about that here. After eighteen years, the initial instinct to freak about any physical change has long left me. I can keep things in perspective better at this point in my life.

Learning to live with incontinence has also been a challenge at times. Imagine going on a date and wondering how a potential lover will react to seeing that you wear adult diapers? That’s fun. Thank God I haven’t lost the ability to laugh at myself is all I can say.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Queen Tokelove

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  • Smokey the Smurf
The hardest thing is keeping it a secret from everyone and I understand how someone might feel they are living a lie....but what choice does one have when if its found out it can be a bad situation gone worse.

Keeping it a secret, which I have successfully done for ten years and having to live in poverty just to get a bottle of pills each month....

I can definitely relate. That is my biggest challenge because I have tried on many occassions to be open and disclose. Only to have it end badly and now I feel like I can't trust anyone to tell them. What may be easy for some is not easy for others.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline SouthSam7

  • Member
  • Posts: 428
Hey guy in Bama:
  What do you mean by "living a lie?"
Betty I mean that it's lying by omission if you don't tell someone you have hiv.  If you don't tell them you have hiv, then they would assume that you are hiv negative.

Offline kellyspoppi

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hi all,

i have read this thread with great interest and at the same time, with such sadness. it troubles me that after 26 years of hiv/aids in the world, and especially here in the usa, STIGMA & disclosure issues still rule so many lives.

with so many long term survivors contributing to these forums, i feel the need to ask this question. how many of you with 10 to 20+ years of living with hiv are fed up with the stigma associated with hiv and the feeling of having to live this illness as a secret. i am especially concerned with those who still find it diffficult to talk to their parents, siblings, best friends about this disease? haven't we as a nation learned anything?

we ( LTS's) have had an adequate amount of time to process much of the anger, frustration, despair, fear, anxiety, etc,etc that comes after the shock of our initial diagnosis. i understand it is a long term process getting through the multitude of feelings associated with having an illness that we were supposed to die from.  then having to adjust from "i'm going to die" mode to " now that i am living with hiv, how am i going to deal with side effects and other complexities associated with "living with hiv"( ie. insurances, re-entering the work force, dating, & long term relationships). wow, it was just as tiring listing them as it was thinking about what it took to get through them!

but here's my point. after 10 years of getting adjusted to life with hiv, when is time to stop worrying about stigma and disclosure? aren't we past the point where hiv is no longer just a "GAY" or "IDU" disease? that aids does not discriminate, that it effects everyone.

i can understand the stigma associated with the early years ( for me, late 1980's)because it was for that reason alone, that this hiv+ heterosexual stayed away from support groups. how was i going to identify with gay males and IDU users, something i knew nothing about? so for 2 years after my fiance passed away i tried to live this disease all by myself. that was my fault and my loss. that meant 2 years of beating myself up with alcohol and quite nearly costing me my life.

that time came when i nearly killed myself driving under the influence. i realized then that this wasn't the path i wanted to take. i then reached out to a support group, and although i was nervous as hell that first night being around a circle filled with folks from different life styles than i.  the end result was sharing with folks living with what i had became the driving force behind a most life enriching experience.

from support group participant to becoming an aids activist and contibutor to the legislative process has been the best thing that ever happened to me. but more importantly, the more i talked to others about living with hiv, the more comfortable i got living with it.

now i resent hidding behind the stigma, and choose to reject stigma as part of my life. are their other LTS's that feel the same way? if you don't, why not?

yes, it is true that it took 20 years before i experienced rejection due to my hiv status ( ie "flags of a father" POZ APRIL EDITION), but everything happens for a reason,  and as a result of missing my son's return from iraq,  i was able to participate in C2EA and march my ass off in washington DC.

and yes, fear of rejection dominated those couple of years after i lost my fiance to aids in 1989, but faite & that support group brought me my current wife and the end to those fears.

screw the military, but thanks for reminding me that there is a time and a place to disclose. to me, there are plenty of times we need to disclose, otherwise how do we teach the less educated to fear the virus, not us?

be honest with me LTS's? am i living a pipe dream here or am i right?  that the time has come for us LTS's to stand up against stigma, and give the newly infected folks the courage to be open about their status, so parents, siblings, and friends can share in supporting them through the difficulties of living with their illness. that we don't die alone leaving our loved ones at the casket with the question, "why didn't he/she tell me they had aids?"

enough is enough. no person should have to fear disclosing to those whom they care most about. it is time to break down those barriers so living with hiv can be about support & survival, not silence & stigma!

FEAR THE VIRUS, NOT US!

AM I RIGHT?

kellyspoppi

 

 

Offline BT65

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Hi Kelli: 
  I'm with you on this.  But remember, you  are not a gay person and thus don't face the same kind of fears, emotions, feelings and issues that some gay people do.  I'm bisexual and when I came out in the local newspaper as being such (because my state has no hate crimes bill) I got a very nasty letter from a lady from the Catholic church.  Also remember, if it weren't for the protests and demands from gay people, there wouldn't be the medicinal advances and treatment advances that there are today.  People have always been active.  It's just that some people probably have very valid reasons not to be.  And who knows anyone else's family?  Mine happens to be very supportive, but they still had to be educated.  Some families are still very rejecting if something happens different from the "norm" that they expect out of their family members.  I wish things in my home town were different, but I don't even know any other women in my town who are HIV+.  I'm sure there are, they just "stay in the closet."  I wish things were different EVERYWHERE.  But until the day comes when everyone can be safe, I just try to remain as accepting as possible about other people and what they decide to do. 
 Hugs,
   Betty ;)
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline kellyspoppi

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thanks betty,

you will get no argument from me on any of the points you addressed. i am fully aware that if it wasn't for the actions of the gay population in this country, i probably wouldn't be alive today. it was a gay act up member who moved back to my city that got me started in my involvement back in 1994.

and i also must say, unfortunately, that here in new york state where our aids service delivery systems are pretty thorough, and we have a large plwa advisory committee, a majority of those infected who are active advocates are gay males. it makes me so mad that white heterosexual positives are still in hiding for the most part.

i know it took me quite a while to get past those fears, but my pleas are to those LTS's who have gone through that process. we all have to come to that point sooner or later. it is too damn agravating not to.

i was in washington dc this week for aidswatch and the vast majority of attendees were either gay males or minorities. we need more representation from the hetero positives to show there is balance in how this disease is spreading.

call it what you will, but i'm hoping to plant a fire in some butts here to get folks to come out and help in the fight. many of us have been the voices for so long we are feeling the burnout. we need new blood to pick up the torch and carry on the message.

my thanks to you for your personal message. everything you said is true. i am just so angry though that aids has been a part of our lives now for 26 years & stigma still rules the day. we have got to make it end.

kellyspoppi

Offline BT65

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Hey Kelli:
  I'm with you all the way. The heteros have certainly NOT been doing their jobs.  In the town I live in Indiana, there is only one AIDS agency and NO ONE  who is employed there is HIV+.  It makes me really angry, but they say someone has to have a degree to work there.  I am finishing a BS in psychology and that may be one of the places I hit up for work when I graduate, so maybe I can make a difference.  I know I'm bi, but just a female face in this town, someone who actually has the virus, would be good.  There are so many here who are afraid to go to any type of HIV support group.  I don't know any other woman in this town who's willing to "out" herself about her HIV status.  I am.  I don't care who knows, because I refuse to live life in hiding.  Good job Kelli, point well taken! ;)
   Peace-
Betty a.k.a. Hollywood (hmmmmm... I wonder where that name came from? Actually I got it when I was a stripper when I was 17 and it just stuck).
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline milker

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Kellyspoppi,

I got chills reading your post. It felt like the Nikki Giovanni's talk at VT. I will use it to get strength about disclosing to my sister.

Thanks, Kellyspoppi

Milker.
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

Now accepting applications from blowjob ninjas™

Offline kellyspoppi

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thanks milker. i'm not familiar with nikki's speech, but i hope it was inspirational.

betty, i just completed my 2nd term on the board of directors of my ASO. i wonder if your agency has any hiv+ folks serving on it. i also chaired the client services committee for the agency, which gave us pwa's an opportunity to learn more about the agency, how they handle all aspects of client services, and when needed, asked the agency to respond to why some services were taken away without first consulting the committee they formed to provide client input on service related issues.

most boards of directors are required to have plwa membership, or it not required, they are encouraged to seek representation from the plwa community.
then most boards have sub-committees which meet to cover different aspects of the agency, like finance, governance, client services, fund-raising, etc, etc.

client services committee usually is made up of the agencies dir of client services, the asst to the exec director, and then clients of the agency.

if you are thinking of going to the agency for employment why not inquire first about becoming a board member. most agencies would like to say they have pwa members on the board as it looks good when they are applying for ryan white funded grants.

if your state does not have a ryan white hiv care network, and you would still like to get connected, see if anyone knows who the state c2ea rep is. the campaign to end aids is looking for more people to hop onto their cause.

if you have any further questions, please feel free to send me a PM hollywood.
"kellyspoppi@aol.com"

i look forward to hearing from you.

KP

Offline milker

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  • Protected phone sex
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

Now accepting applications from blowjob ninjas™

Offline xyahka

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  • Dance together!! aha!! aha!! I like it!!
Hi Kelly i am with you and i also think that if LTS's would have taken the time to disclose some time in the middle of the 10 to 20+ years of living with illness now ......

1. There would not be so many newbies here nor around the world
2. We would be much more open to disclose and talk about this
3. We all would face less stigma

My intention is not to blame anyone for what was not done... i am gay in the closet and i understand all the fears (i am in latin america, remember) but... a change must start in some moment... i put my face in the blog, disclosed to my friends and mothen... and i can tell you this.. my friends are most likely not be infected. Now they know it happens to anyone and slowly they will start spreading the news about this. I am by now their life example that this illness can be handled and i hope that at least helps some others behind me. If we all do that we might create the change we all have wished for.... but i know it takes time for some of you... well.. if there are some others who are brave enough.. lets start talking.. it is the only way to be heard.
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...

Offline Matty the Damned

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Hi Kelly i am with you and i also think that if LTS's would have taken the time to disclose some time in the middle of the 10 to 20+ years of living with illness now ......

1. There would not be so many newbies here nor around the world
2. We would be much more open to disclose and talk about this
3. We all would face less stigma

My intention is not to blame anyone for what was not done... i am gay in the closet and i understand all the fears (i am in latin america, remember) but... a change must start in some moment... i put my face in the blog, disclosed to my friends and mothen... and i can tell you this.. my friends are most likely not be infected. Now they know it happens to anyone and slowly they will start spreading the news about this. I am by now their life example that this illness can be handled and i hope that at least helps some others behind me. If we all do that we might create the change we all have wished for.... but i know it takes time for some of you... well.. if there are some others who are brave enough.. lets start talking.. it is the only way to be heard.


What?

Fuckin' what?

Let me get this clear. I'll requote it in another fuckin' colour.

Hi Kelly i am with you and i also think that if LTS's would have taken the time to disclose some time in the middle of the 10 to 20+ years of living with illness now ......

1. There would not be so many newbies here nor around the world
2. We would be much more open to disclose and talk about this
3. We all would face less stigma


Now I may not be the brightest light on the christmas tree and I'm painfully aware that English is not Juan Carlos' (the newest AIDSMEDS blogger if I'm not mistaken) first language.

But am I the only one who reads something a bit off in this post?

I'd say more, but I could be missing something in the translation here. Certainly someone is missing something.

MtD >:(

Offline kellyspoppi

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matty,

i understand what he is saying. stigma has ruled peoples lives with hiv for far too long. fear of it ruled my life and i'm not happy about it. i have resented living with an illness that i was afraid to talk about for fear of reprocussions.

had i been more open about my illness as a heterosexual white male, maybe by talking to the press and being open about how i got hiv back in the mid- 90's, then maybe i could have helped to prevent the spread of aids in the heterosexual community.

look, i know i am talking alot of maybe's here, but what i am admitting to is that i am fed up with stigma, plan to be more open about my illness, because i feel after 26 years the time has come to break down these barriers.

i am not blaming anybody but myself here. had i gone through the process of getting comfortable with my illness and spent more time being open about living with it, instead of letting fear of stigma rule my life, then maybe i could have helped to prevent a few less newbie's in this world.

because i don't represent the perceived norm of who is getting infected, yet assume more and more hetero's are getting infected every day, i owe it to use my story as a way to reduce future infections.

and i owe it to myself and my health to be open about my illness, to talk to others about my hiv just as if it were cancer. living in silence is no longer an option for me.  i recognize i am in the minority here, but i feel it is time to end this stigma bullshit, and i am mentally prepared to lead the way.

i hope that clears up your questions about the response to my previous post.

kellyspoppi 

   

Offline Matty the Damned

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K,

It is entirely possible that Matty the Damned has grasped the wrong end of the stick here, he is notoriously hot-tempered as befits his red-headed nature. ;) It is often the case that the error lies not in the writing, but in the reading.

If that's the case in this situation he apologises to both Juan and yourself.

MtD

Offline kellyspoppi

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no apology necessay matty. i immediately understood where you were coming from and i value your opinions.

i am in a new place with this disease in my life and as betty has clearly pointed out to me, others who post here have a legitimate reason to feel uncomfortable disclosing and fear stigma. they have valid concerns!

my mission is to try to do something about reducing those fears. i am saddened by seeing more and more newbies posting here, and feel much of their fears have as much to do with this continued stigma as it does with their life expectancy.

it also saddens me when i still read posts of folks who are afraid to disclose to their families and dear friends, and that they must live this illness in silence and isolation. that should no longer be the case after so much time has passed, but unfortunatey it still exists.

hopefully more folks who post here will reach a point i have and begin to take action to reduce this stigma. enough is enough!

kellyspoppi 

Offline J.R.E.

  • Member
  • Posts: 7,099
  • Joined Dec-2003 Living positive, since 1985.


Making sure I get myself up for work everynight ! Thats my main goal/challenge, keeping myself employed.


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline kellyspoppi

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  • Posts: 153
milker,

much appreciate you giving me the opportunity to witness nikki's speech. truly inspirational.

thanks again,

KP

Offline BT65

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  • Vegas baby!
Hey Kellly-
  The ASO here has NO ONE who's HIV+ on their board, nor do they want any on it right now, for reasons unbeknownst to me.  It's kind of a strange agency and trying to get them to give a reason for anything they do, is, well next to impossible. :(   I'm not sure about the Ryan White money for Indiana.  I will definitely call there tomorrow and ask them about the issues you raised.  Good points!
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline kellyspoppi

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  • Posts: 153
betty,

you stay in touch and let me know if i can help in any way.

KP

Offline naftalim

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In my case it has to be the relationship issue, or lack thereof. As a hetero male, I dont even try to get to know anyone who is not positive.

Offline Peter6836

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  • Posts: 391
  • Me and my Granddaughter Noa
ANGER, not that I am infected, or that my life may be shorter than it may have been, or that I may have to suffer some illness that others may not experience. Anger that I have not yet found my bliss. What I am meant to do with my life, what I should do with my life, how I can make a difference in the world. I want so much to feel love and experience love. I want so much to be Christ like and do the right things with my life. Its length does not matter but its substance does. I feel that I have a clock ticking that now creates a timeline that I need to follow. I have no problem with my mortality, I have no fear of death. But I have a fear of living, a fear that I will not live life to its fullest. That I will not be able to love as much as I can. That I will not be able to be loved as I would like. I fear that I will not be able to make the difference in the world that I want to make. Not that I want to be known as Gandhi, or King, or Einstein, I just want to make a difference in the world that is important.

Offline Strayboy74

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  • tastes like chicken
the biggest personal challenge facing me with regard to my HIV Status is allowing myself to ask for help.

-joseph

Offline incognito

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  • Look deeper... there is a heart, mind and soul
biggest challenge is finding a lover, partner, or long term relationship.  often when i meet someone new and maybe have dated a few times, the feeling that it might turn into something long term is immediately and completely overwhelemed by the odds that the potential partner is probaly negative. (has happened way too many times).  almost always now i work hiv status into the conversation right away if i feel like there is long term potential.  better to have the pain up front before investing a lot of energy and emotion into the relationship. its a horrible barrier to being intimate and dating.   knowing that being hiv+ extreemely limits options for potential partners is a source of constant depression.  i travel a lot for work and often in remote locations.  that plus being poz makes me wonder if i'll ever have a partner again.
If you recognize me please honor my need to be anonymous here to interact on a personal level.

Offline racingmind

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  • Posts: 236
The biggest challenges I have been repeatedly facing since testing positive are:

Feelings of worthlessness; like I failed somehow.

Feeling "damaged."

Feelings of depression, anxiety, and despair.

Fatigue and lack of motivation.

Severe mood/attitude swings. 

 :-\

 


Tested Negative: 5/06
Tested Positive: 9/06 
9/06: CD4: 442 (28%) VL: +100,000
10/06: CD4: 323 (25%) VL: 243,440
11/06: CD4: 405 (28%) VL: 124,324
12/06: CD4: 450 (29%) VL: 114,600
1/07: CD4: 440 (27%) VL: 75,286
3/07: CD4: 459 (30%) VL: 44,860
5/07: CD4: 353 (24%) VL: 50,852
7/07: CD4: 437 (29%) VL: 39,475
9/07: CD4: 237 (32%) VL: 372,774
10/07: CD4: 324 (27%) VL: 115,454 
Started Atripla: 10/07
11/07: CD4: 524 (?%) VL: Undetectable!
2/08: CD4: 653 (35%) VL: undetectable
5/08: CD4: 822 (40%) VL: undetectable
8/08: CD4: 626 (35%) VL: undetectable
12/08: CD4: 619 (36%) VL: undetectable
3/09: CD4: 802 (38%) VL: undetectable
7/09: CD4: 1027 (43%) VL: not tested
10/09: CD4: 1045 (43%) VL: undetectable

Dan J.

  • Guest
The biggest challenges I have been repeatedly facing since testing positive are:

Feelings of worthlessness; like I failed somehow.

Feeling "damaged."

Feelings of depression, anxiety, and despair.

Fatigue and lack of motivation.

Severe mood/attitude swings. 

 :-\



 





I know exactly how your feeling.

Dan

Offline SASA39

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  • Posts: 690
1.Social stigma

2.Fear : - of cancer (almost all my family has died from it :mom, dad , uncle, sis ...)
            - of disclosure ( consequences for my kids , wife  my job  )
            - of nasty side effects ( lypo , neuropathy , ....)
            - fearing to die in a pity way
            - some other medical issues that have to be solved (varicose veins opperation...........)
            -because I was late starter and doc have saved my life CD4=58 ( with no visible signs beside a termendous tiredness and throath Candida)

3."living a lie" life style.........only my wife know

4.Shame because I`m afraid of allowing myself to ask for help.( in some matters : specialist - proctologyst , .....)

5.Being a black sheep : loosing my all day permanent  job as a engineer ( due to a tiredness and Sustiva.........)while everybody else is working.That has as a consequence :
Quote :Feelings of worthlessness; like I failed somehow.
           Feeling "damaged."
           Fatigue and lack of motivation.
           Severe mood/attitude swings

6.Feeling that I `ve betray my kids and wife: only truly friends beside my parents that I`ve ever had >consequence : deep Depression without any social support........................

7.Feeling like I have committed a self suicide (like dying inside me)

8.Bad dreams and inner thoughts that won`t go away.

9.Anger because I was never like this before

10.Great Mental & physical tiredness because of stated above.Feeling that I`ve did not deserved this desease............

Enough.......................?

But a question is :

How to get rid of all of this ?
Sorry if this was too depressing and too direct but the title was apropriate and I have no other place to speak.And there are many fine members here......... ( with great dose of courage , dignity and human feelings toward other members)

Trying to fight this  damn desease ,and myself..............without booze , AD`s , or something worse.....................
Any comments will do .................or better proposals.............
Let`s try to find a solution together.................

                                                  Al

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 Iggy

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SASA - please don't apologize for what you wrote - it's empowering to me to see someone so starkly honest about their fears.  I personally thank you for this.

Quote
Trying to fight this  damn desease ,and myself..............without booze , AD`s , or something worse.....................

I'm not sure if you meant fighting yourself or fighting the fears within yourself, if it is the latter - I am in the same place.

Offline SASA39

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What i meant is a fact that I`m fighting not to use those things to eradicate fear.This desease is not an ordinary one.Because in most deseases you are fighting one enemy ( high pressure ,  heart , ...) , or two/three ( diabetes in late stages).But here feel like walking in a Bronx in a middle of a darkest night
waiting to be robbed again & again..................or fight against whole highschool class of yours.................no single day of rest , without fear ( not all of them , but they DO have a pattern of  showing) , meds , side effects...........add more...............
                                                    Al
And a purpose was to point to all of them and to find a way to fight back.         
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 erasfred

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  • Posts: 12
Treatment adherence. It's an enormous effort for Matty the Damned. Not the night-time dose, but remembering to take the morning dose.

Bugger. Which is what I've gotta do know. Ah, shit! Or did I already take the fucking thing?

MtD
(Who can never remember)

That I totaly agree with and then the total and utter exhaustion in th early afternoons.  ???  I have had a bout of depression a few months back after three years of living with Hiv But my doctor has put me on a course of Happy tablets and it's improving.

Rassie

Offline erasfred

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  • Posts: 12
hi all,

i have read this thread with great interest and at the same time, with such sadness. it troubles me that after 26 years of hiv/aids in the world, and especially here in the usa, STIGMA & disclosure issues still rule so many lives.

It is not only the USA but the same still happens in South Africa and I am sure that it happens all across the world if we take the time to find out about it

we ( LTS's) have had an adequate amount of time to process much of the anger, frustration, despair, fear, anxiety, etc,etc that comes after the shock of our initial diagnosis. i understand it is a long term process getting through the multitude of feelings associated with having an illness that we were supposed to die from.  then having to adjust from "i'm going to die" mode to " now that i am living with hiv, how am i going to deal with side effects and other complexities associated with "living with hiv"( ie. insurances, re-entering the work force, dating, & long term relationships). wow, it was just as tiring listing them as it was thinking about what it took to get through them!

I've learnt to adopt the attitude of "SO WHAT"

now i resent hidding behind the stigma, and choose to reject stigma as part of my life. are their other LTS's that feel the same way? if you don't, why not?

screw the military, but thanks for reminding me that there is a time and a place to disclose. to me, there are plenty of times we need to disclose, otherwise how do we teach the less educated to fear the virus, not us?

be honest with me LTS's? am i living a pipe dream here or am i right?  that the time has come for us LTS's to stand up against stigma, and give the newly infected folks the courage to be open about their status, so parents, siblings, and friends can share in supporting them through the difficulties of living with their illness. that we don't die alone leaving our loved ones at the casket with the question, "why didn't he/she tell me they had aids?"

enough is enough. no person should have to fear disclosing to those whom they care most about. it is time to break down those barriers so living with hiv can be about support & survival, not silence & stigma!

FEAR THE VIRUS, NOT US!

AM I RIGHT?

kellyspoppi

  In South africa Our Support froup motto is "Nothing For us Without Us" Can We do that if we are not willing to talk about it?

 

Offline kellyspoppi

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erasfred,

thanks for the comments. i'm not sure i understand though what you meant when you said you took on the attitude of "so what"? to dealing with the complexities of living with hiv?

kellyspoppi

Offline chemistry001

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First off TAKE THE MEDS, don't start missing doses.

My biggest challenge has been to keep smiling. When the people close to me have been told and they fall apart i feel i have to be strong for everyone.
Before the aids i was always the person that made everyone smile, that friends would come to looking for comfort and a shoulder to cry on. I was always the person to deal with other people's problems. So when my new found friend (or should that be fiend, aids) came along and almost took me away, i have found it hard to cry in front of people.
I still remember laying in the hospital bed hooked up to drips and oxygen when i was told i had aids and thinking, all i want to do is cry, but behind the curtain were family and my boyfriend and i was not able to, so the doctor went away and the curtain was drawn back and i smiled and said " they think it's a viral chest infection".
That night i told my boyfriend, he fell apart and i took him in my arms and held him until he stopped crying, all the time i couldn't cry but kept saying its fine, I'm going to be okay.

When my bloods have come back lower than i had hoped and prayed for i still manage to smile and say "Its fine, they will be better next time". I still have not cried about the whole situation, but put on a brave face and face the world.

That has been my biggest challenge

Love to you all
Paul xXx
Diagnosed 01/08/06
CD4-9, VL->500,000, CD4% 1
Started on Sustiva/combivir 22/08/06 changed to kivexa 18/09/06
02/10/06
CD4-50, VL-1496, CD4% 5
04/12/06
CD4-112, VL-125, CD4% 7.5
22/02/07
CD4-121, VL-<50, CD4% 9
29/05/07
CD4-125, VL-71,(re-done 149), CD4% 11
25/09/07
CD4 -231, VL-74, CD4% 15
Cant remember the next few dates
17/01/08  Kaletra and Truvada
CD4 - 281, VL-115
06/03/08
CD4 - 287, VL-178

Offline planonstaying

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The hardest part  is not telling everyone.  I am new to all this. I   have started being angry at the world i think and want both the acceptance and the conflict that disclosing would bring. didnt realize how angry I was till it was pointed out=//.
i committed with my therapist not to go all radical and seek  long term problems  by being over open
« Last Edit: May 05, 2007, 09:06:21 PM by planonstaying »
If someone tells you  potential consequences of a behavior  it  doesn't  mean they jude you or mit    they may just give a shit about you

Offline milker

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i committed with my therapist not to go all radical and seek  long term problems  by being over open
Yup, I over disclosed the first two days after getting the news, and I regret that, it was absolutely not necessary.

Milker.
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

Now accepting applications from blowjob ninjas™

Offline BT65

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Actually, when I found out I told someone I was in treatment with at the time. Well, my mom called on our patient's phone in the lobby and the person I told answered.  She told my mother, who, of course, immediately panicked. My first husband died two days later.  So my mom came up to the treatment center and brought my daughter up with her, who was five at the time.  I had to tell my daughter about her father, but I didn't tell her about the HIV.  When I got out of treatment, I got a degree in medical assisting and got my daughter tested by one of the pediatricians where I worked.  The doctor just told her she needed to check on how her (my daughter's) body was doing.  Thank God she tested negative.  I don't know what I would have done, since this was back in '89 and they didn't have the treatment advances they do today.   I'm truly grateful that she was negative.  My heart pounded all the way to my daughter's doctor's office to get the results!
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Strayboy74

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Biggest difficulty for me (aside from the one I've already mentioned) is in achieving and maintaining solid BMs.  And, the dryness of the toilet paper.

It's so bad at times that I swear my ass is cracking the other way!

-joseph

*edited to add aside.
« Last Edit: May 06, 2007, 01:55:29 AM by Strayboy74 »

Offline BT65

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Hey Joseph-
    When that happens to me, I put vasoline on the toilet paper before wiping my ass!  Maybe that will help, I don't know.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Strayboy74

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that sounds messy...   like a big glob or something???

LOL

-joseph

Offline milker

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that sounds messy...   like a big glob or something???

LOL

-joseph
Bon Appetit !

No, seriously I hope this situation improves soon, Joseph.

Milker.
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

Now accepting applications from blowjob ninjas™

Offline BT65

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that sounds messy...   like a big glob or something???

Yes, but a smooth, tolerable glob!
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline AIDS2HIV

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jsut thought id share this site, as this thread seems appropriate..it answers everyones "biggest personal challenge"......"self"

www.selfcreation.com
Its the future of Hiv Education, and Resources www.aids2hiv.com      Got Community?

Offline Iggy

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uhm...bettytacy, strayboy and milker can I dare be so bold as ask that you don't make this a joke thread?  Personally - I don't appreciate it.

Have fun all you want in the off topic forum where I guarantee you will not hear a word from me, but as someone who comes here to deal with Living with HIV your irrelevant comments really hurt me and disturb me.

Offline Strayboy74

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uhm...bettytacy, strayboy and milker can I dare be so bold as ask that you don't make this a joke thread?  Personally - I don't appreciate it.

Have fun all you want in the off topic forum where I guarantee you will not hear a word from me, but as someone who comes here to deal with Living with HIV your irrelevant comments really hurt me and disturb me.


With all due respect, iggy, my question and my biggest challenge have all been on the level.

I never took this thread as a joke.

And if you feel that my responses in this thread have been such, all I can tell you is that it's a pity you feel that way.

I'm sure that if you reread my postings sans ego and attitude, you'll find that the whole transpiring was genuine.  So, if my postings in this thread, do indeed 'hurt' and 'disturb' you (as you say), then it's entirely an issue of your own creation, and I fear I cannot help you.

I think you're being terribly sensitive on the issue.

-joseph
« Last Edit: May 06, 2007, 01:42:41 AM by Strayboy74 »

Offline Iggy

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Quote
that sounds messy...   like a big glob or something???

LOL

-joseph

Yes ...it's all my imagination and ego and attitude.

I'll leave it to the moderators
« Last Edit: May 06, 2007, 01:49:51 AM by Iggy »

Offline Andy Velez

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OK, please pause for a minute here folks, before this powerful thread gets sidetracked through what I think maybe a misunderstanding.

Iggy, I don't read the comments you are getting as a deterioration of the thread into move into jokes as being that. What I get is a very real and common problem of side effects being referred to by Betty, Stray and Milker with some dark humor.

However, even as I say that, at the same time I would ask them and others to not get into personality interpretations and exchanges, but rather stay on course with the theme of this thread which has evoked affecting responses from so many members.

Thanks for your cooperation. 
Andy Velez

Offline flight62

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biggest challenge is finding a lover, partner, or long term relationship.  often when i meet someone new and maybe have dated a few times, the feeling that it might turn into something long term is immediately and completely overwhelemed by the odds that the potential partner is probaly negative. (has happened way too many times).  almost always now i work hiv status into the conversation right away if i feel like there is long term potential.  better to have the pain up front before investing a lot of energy and emotion into the relationship. its a horrible barrier to being intimate and dating.   knowing that being hiv+ extreemely limits options for potential partners is a source of constant depression.  i travel a lot for work and often in remote locations.  that plus being poz makes me wonder if i'll ever have a partner again.

I couldn't had said it better. I'm going to have to stick a dildo in that slowly closing relationship window. :o

Offline flight62

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Another challenge for me is facing that there is a big chance I will have to actually watch my parents or siblings die. Or that I just might be in a position to grow old alone and rot in my bed before anyone notices.

Offline kellyspoppi

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i have re-read this thread after being away for a few days, and a couple of common issues remind me of the days of turmoil and darkness.

depression. boy can i identify with that. i really hadn't had a chance to deal with my pwn hiv until my fiance died. i just remember than when she was alive things seemed normal. as long as we had each other, we could deal with this disease together.

after she passed and the family and friends had left after the wake and funeral, i remember laying on the end of the bed saying over and over"who is going to want me now that i have hiv?". then the sobbing started and seemed like it would never end.

i couldn't get under the covers in bed without her there to warm my soul anymore, so i spent every night lying on the edge of the bed staring at the television until it would my eyes were so tired they couldn't stay open. one can only take that so long.

so then i tried hitting the bars trying to find someone to fill the void. every single weekend was the same routine. as soon as my son was picked up by my ex, i was right out the door behind them heading to the first bar. most nights i was blind by midnight but somehow maintained standing until they closed as the birds began to churp. how i made it home i'll never know.

music made me cry during this depression and i couldn't seem to get out of this hole i was digging myself into, deeper & deeper as the loneliness and despair became more overwhelming.

as i said before, a near miss accident startled me enough where i began to seek help. that was 1991, and i am still here to tell you that finding yourself a good therapist, one who can teach you cleansing meditations, visualizations, hypnothereapy, etc etc can make all the difference in the world.

for those with relationship issues, this too was a tremendous sourse of my depression. i was in my late 30's when my fiance passed. i had a great job, decent apartment, and i still felt i looked pretty damn good for my age. but hiv made me feel like i lost that edge, like i was dirty, like i had this flaw on my person that everyone could see.

anytime i found myself in a one night stand, i had this mind blowing fight between the devil on one shoulder saying "go for it!" while the angel was on the other shoulder saying "you must disclose!" who the hell could get a rubber on with all that infighting!

most times i would tell her i just wanted to pleasure her so i wouldn't have to disclose, but sure enough, a few nights later they would be back and place me in that situation once again. some would burn skid marks running out the door, and some would stay.

then you had to deal with "how were their family and friends going to feel with this guy playing russian roulette with their loved one!" or some that were so interested in getting married, they tried to get infected by you just to make sure you wouldn't break up with them. how bizzare!

therapy helped me work through all that. after going to the clinic with one of my negative girlfriends, sitting in the waiting room waiting for her to get her test results, i had a panic attack. that was the last time i dated a negative woman. i just couldn't live with the thought of being responcible for passing this onto another.

once i came to that realization, i met my current wife at a hiv support group. call it faite. whatever, it was how it worked itself out for me.

i just wanted to let you know, i have been there, and this is how i survived my depression.

kellyspoppi   

 

Offline Jake72

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I'd say the biggest challenge I face is that there is (currently) no closure to it.  Other challenges (getting through school, an unpleasant job, a crappy relationship, many other illnesses/conditions) have a point where you're done or you just walk away.  Then you can begin to get on with your life.  Then you can exhale and say "that sucked, but I'm past it now." 

With HIV, we don't yet have the luxury of closure.  Every  time I take these damned pills (and I've never missed a dose, despite major med burnout here), I'm reminded that I have a stigmatized illness that, frankly, most of the world doesn't have.  I'm reminded of the fact that I was infected by someone who betrayed me.  Every time I go in for bloodwork, part of me remembers the sheer terror I felt in the doctor's office when I first got that poz diagnosis.  And as undetectable as I may be, as robust as my immune system is (knock on wood), and no matter how much personal and professional fulfilment I may have, I'm still just as HIV+ as I was on the day I was diagnosed.  And that, barring some amazing cure, therapeutic vaccine, or non-daily treatment option, I know that in six months, one year, five years, ten years, I'll still be taking pills, every single day, because I'll still be just as poz as I am now, as I was nearly eight years ago when I was diagnosed. 

Offline resilientboy

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im only twenty one yrs old and i have to deal with this shit.  i believe the hardest thing to for me to deal with is the reality of it all from the meds to disclosing!

Offline kellyspoppi

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jake & resilient,

as you could tell from my previous post, i too was there once. but the fact is, we have hiv and we will have it for all long time to come, and all the baggage that comes with treating it.

i used to think it was like walking down the street with this dark cloud hovering over my head wondering when the hammer was going to drop down and hit me. but that was before they found meds to keep us alive.

another way i viewed it was that it was like i was a runner being chased by hiv. as long as i was capable of staying out in front of it, then aids would never rear it's ugly head into my system. meds have given us the potential for a longer life before that happens. yes, it can be exhausting, just thinking about the complexities of that prognosis, but choosing to "live" that complex life is really up to you.

back in 1990, i went to a large group psychic reading (about 20 people in the circle) and during the course of several readings, one of the psychics called out my name. he said i have a message for you. i see this extremely dark cloud hanging over your head, but i want you to know that there is brilliant rays of sunshine about to rise above all that darkness, and that soon your feelings of despair will be lifted.

i had no clue what he meant by that at the time, but certainly now, 17 years later, i do. knowing you have the availability to live a somewhat normal life should bring "hope" into the picture.  without hope, we would be nowhere.

now it becomes a matter of "what are we going to do with the rest of our lives?" are we going to let hiv rule our life, or find a way to take back control. that is totally up to the both of you.

i have done everything i possibly can to take back control of my life. to become educated about my illness and about my treatment. i have become an advocate for myself and others with this illness who can't, or won't speak out for themselves. i have connected myself to the hiv community by getting involved with those agencies who serve us so that they have a voice of the client to deal with. and i have tried to live my life as though hiv was just a nuisance, like some dog who comes up barking at you when you are out for a walk. if you stare him down, he'll go away.

reach out my friends, and get connected. regain control by making your body, mind, and spirit whole again. then pick up a glove and get back in the ball game!
life is all about choices, giving in, or getting on with it.

i choose to live! how about you?

kellyspoppi

Offline Jake72

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I appreciate your words, Kellyspoppi, but I don't want to give off the wrong impression.  I'm not sitting around sulking and sobbing.  I'm generally an upbeat person, and since my diagnosis, I've pursued my education, built my career, traveled, become a vegetarian, quit smoking, etc.  But since the thread was about personal challenges, I admitted mine.  I don't like being "chased by HIV."  And I'm far from being newly diagnosed.  I don't think I ever will be "okay" with it.  That doesn't mean I'm being held back or missing out on the fullness of life.  For the most part, I'm not letting HIV control my life.  In fact, unless I'm taking meds or posting here, I usually don't think about it.  I'm certainly not in denial and have accepted the reality of this.  But that reality is that no matter how successful, active, happy, and healthy we are, we still have to take those same pills, deal with the same side effects, etc., which implies that we do have to give up some control.

And since the community here was asked, I confessed that the open-endedness (the very need to take toxic pills day in and day out to stave off illness and/or death) of this does bug me.  The (as yet) neverending quality of the nuisance of this does annoy me and will probably continue to annoy me.  If there ever (miraculously) is a cure or a therapeutic vaccine, then the memory of the experience will likely annoy me.  I guess that's just one of my nutty quirks. 

« Last Edit: May 08, 2007, 10:15:10 AM by Jake72 »

Offline JPinLA

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Being newly diagnosed the biggest challenge is believing it...oh, I'm reminded everyday when I take my meds and I basically think about it every minute but it still does not feel real.  I imagine that must sound a bit off but I've felt like I've been watching a movie about myself with a similar type of disconnection and ambivalence I would a summer blockbuster. 

That, coupled with telling or not telling friends and family, guilt, shame, worry about my partner, future..all the regular feelings I expect that come along with being HIV positive. 

Now that I'm sitting here writing this, I actually think that one of the biggest issues is the shame.  I realize this is a common theme, but if I was diagnosed with testicular cancer I would not be hesitant to tell any of my family or friends.  It is, once again, the stigma surrounding HIV that makes it so much more difficult; at least for me.

JP

 
11/06 - Diagnosed - VL/5784 & CD4 326
2/07 - VL/6000 & CD4 290 2/07
3//07 -Began Truvada/Viramune 
4/07 VL/undetectable and CD4 320 22%
7/07 VL/undetectable and CD4 286 22%
11/07 VL/undetectable and CD4 302 26%

Offline justchill

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #78 on: November 02, 2013, 02:25:23 PM »
finding poz women, also the thought of not being able to have children
Leo_ThePrince

Offline mecch

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #79 on: November 02, 2013, 02:57:16 PM »
finding poz women, also the thought of not being able to have children
Read threads on this forum. Discuss with HIV+ parents.  HIV+ people can have children.  ;D
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #80 on: November 02, 2013, 03:02:03 PM »

5.Being a black sheep : loosing my all day permanent  job as a engineer ( due to a tiredness and Sustiva.........)while everybody else is working.That has as a consequence :
Quote :Feelings of worthlessness; like I failed somehow.
           Feeling "damaged."
           Fatigue and lack of motivation.
           Severe mood/attitude swings


Part of your combo is SUSTIVA?   I think you should find out if you can get off this drug. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline SouthSam7

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #81 on: November 02, 2013, 06:10:50 PM »
Certainly stigma is there and it is a challenge. I find stigma is more of a side effect of terrible care in my area (Atlanta). Depression and severe fatigue, too, but I think I could reduce the severity of each if I didn't have the stress of trying to get my medication and adjunct care, as well as trying to keep my food stamps, etc.

Birmingham, Alabama is light years ahead of Atlanta as far as COMPREHENSIVE HIV care goes, in my experience.

Offline bocker3

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #82 on: November 02, 2013, 11:31:25 PM »
Why did we resurrect a 6.5 yr old thread??
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline jkinatl2

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #83 on: November 03, 2013, 01:20:55 AM »
Certainly stigma is there and it is a challenge. I find stigma is more of a side effect of terrible care in my area (Atlanta). Depression and severe fatigue, too, but I think I could reduce the severity of each if I didn't have the stress of trying to get my medication and adjunct care, as well as trying to keep my food stamps, etc.

Birmingham, Alabama is light years ahead of Atlanta as far as COMPREHENSIVE HIV care goes, in my experience.

I have spent my entire twenty years with HIV in Atlanta and hae managed to receive pretty adequate care, even during the slurry of misinformation that comprised the late 90s and early 00's. Might I ask where you are getting care?

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline leatherman

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #84 on: November 03, 2013, 02:51:30 AM »
Why did we resurrect a 6.5 yr old thread??
in the spirit of halloween;
or maybe it was the time change  :D
leatherman (aka mIkIE)


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

Offline mecch

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #85 on: November 03, 2013, 07:25:19 AM »
justchill opened the Zombie thread.  Then I responded. 

Since his post was recent, I didn't read the date on the few posts before it, and responded to a 5-year old post.
  :-[ :-[ :-[ :'( :'( :'( >:( >:(
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline curious1here

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #86 on: November 03, 2013, 06:08:48 PM »
Shame it didn't get more responses. I think it's really good Idea for everyone just coming on and letting all their challenges/fears/pain out in a rant :) I hope everyone is okay. This is a specially family, who support people they have never met around the world giving them strength and hope x

Offline J.R.E.

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #87 on: November 03, 2013, 07:39:30 PM »
 8)

Personally, I don't think there is anything wrong with reopening an older thread.

It's kind of interesting to see where we've been, and where we are now.

In April of 2007, I wrote in this thread, that my biggest challenge was

"Making sure I get myself up for work every night ! That's my main goal/challenge, keeping myself employed."


And now in November 2013,  I am ready to retire from the same job, that was a challenge for me over 6 years ago. I think that's an achievement. I set my goals, conquered my challenges and it's paying off.

Ray  8)


Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Online mitch777

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #88 on: November 03, 2013, 08:06:13 PM »
I agree Ray. Actually for many reasons, two of which are the fact that it was a good question to begin with and the other being many of us were not on this site when it was posed.
I will have to put a bit of thought before I post but would bet the answers will be much different and yet much the same. (yes, it can happen :).)
So many variables both personally and progress in terms of facing new challenges let alone the differences in age and length of time having this bugger in our bods.
I'm hoping to hear more from everyone too.

Thank you also curious1here for your description of this place. It is exactly how I feel.

It's time for this thread to continue as it is an ongoing process for all of us.

m.
31 years hiv+ (oct. 2013) with a curtsy.

Offline J.R.E.

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #89 on: November 04, 2013, 07:49:00 AM »


It's time for this thread to continue as it is an ongoing process for all of us.

m.


And I agree also. In fact,  I think it should be a sticky !

Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline Rhaegar

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #90 on: November 05, 2013, 10:16:49 AM »
My biggest challenge when I was first diagnosed was to figure out how to deal with the anger at myself that was affecting my job and relationships at the time.

Now, the biggest challenge I face is navigating health insurance plans to make sure I can switch jobs.  Quitting a job and moving onto a new one isn't as easy as it was prior to my diagnosis.  It requires some planning, and sometimes even COBRA coverage.
05/19/2011: Diagnosed.  CD4 159   VL 284,000.
04/29/2013:  CD4 789,   VL <20

Online mitch777

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #91 on: November 05, 2013, 08:17:32 PM »
After a tearful talk with my mom today I can answer the question.

This gets a bit complex so bare with me as my emotions are on steroids.

Mom has enough electrical cords plugged into her brain to grasp the fact that she knows her life is fading. She is depressed, angry, confused and fearful. She doesn't know where to turn at times.

Unfortunately she knows many connections are lost forever.

What to do, what to do. I guess it's just part of life and being human.

This disease has taken a toll on my life. Cognitive awareness seems to slip away in silence. The similarities between my mother and I scare the shit out of me as I know the age difference between us should have delayed our common bond.

So my answer is Ageing with HIV after 31 years.

This is simply my experience and I know those of you that have not lived with this virus as long as I will fare much better.

I strongly suggest to the moderators that this thread become a sticky because it chronicles the struggle each and every one of us faces along the journey.

What I have posted today will most likely change in the years to come. I try my best to be optimistic even in the face of my personal challenges. Ya, I bitch a lot. Comes with the territory.

Sincerely,
Mark
31 years hiv+ (oct. 2013) with a curtsy.

Offline cicero

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #92 on: November 05, 2013, 09:43:02 PM »
I read these posts and relate on various levels with everyone.

Being new to this -- now about 3 months in -- my biggest challenge is shaking the somewhat irrational fear that I'm going to lose my mind. That between the virus and the medication, I'm going to start fading mentally, when I've always been, if nothing else, pretty sharp.  Fear that I'm not going to be able to take care of myself, that I'm going to lose the capacity to do so.

Fear of wasting away, even though I know its different for the newly infected now than it once was.

That, and the fear that something will happen to my employment and I won't be able to afford having this disease. That the employer will figure out that I've become an expensive employee and conveniently eliminate my position.

Fear that every little thing (a runny nose, a scrape, a zit) is going to explode into something deadly or hideous or both.

Also, the fear that I am all alone. I know I'm not the only person with HIV, but I don't know anyone who has it anymore (the one person I was very close to who had it is now deceased though not from the virus), and I just have a couple friends as it is, and as supportive as they are I'm not sure they quite understand.

I don't really worry about the social stigma in a certain sense, but I guess I *do* in that I worry people will find out and recoil from me.

So, in short, my biggest challenge is the fears that I assume are common for us all.

And mitch777, I hear you on "bitching a lot".  You've got 31 years of this, a lot of that time a lot less hopeful than now, so as far as I'm concerned you can bitch bitch bitch away. In fact, please do. Optimism is good for you, but so is venting and expressing yourself.  My best wishes for what it's worth to you and your mother as time marches on. :)
"How could this happen to lovely me?" -Jacqueline Susann

Offline joemutt

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #93 on: November 06, 2013, 02:29:03 AM »
fatigue.

Offline klassykitty

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #94 on: November 06, 2013, 08:06:51 PM »
I'm glad it was resurrected.

It's interesting to read about the challenges people were having 4 years before I was diagnosed.  I wish I had seen this thread when I was diagnosed it may have taken away some of the scardyness that I had. 

I think finding straight men who are "willing" (couldn't think of another word) to have a relationship with a woman who has  AIDS a challenge.

That and the MOUNTAIN of paperwork I have to do every 6 months.

I agree with Cicero that most of us have the same challenges whether it was when we were newly diagnosed and the challenges have gone away, or challenges that  stay with us.

Oh yea, and my doctor still will not let me travel outside of the states yet. >:(

Michelle 8)

How to handle stress like a dog:
If you can't eat it or play with it.....
then pee on it and walk away

Diagnosed 01-20-2011
01-23  CD4 32    VL 125,400
02-18        76     VL 189
03-14  no cd4 test done   VL-52
04-14   69  VL-UNDECTABLE  YEA!!
05-26   50  whoopsy  
06-27   71        %-7
08-15   64 WTF %-9 
10-16  80         %7  
2012  CD4  %Thing   VL-UD
01-18  87    7
04-18  93    8  
07-16  151  8         
10-18  83    9    VL-70
2013   CD4   %thing       VL-UD
01-28  121     9
04-24  148    11   
07-25  157    11   
10-22  185    13
2014   CD-4  %thing   VL-UD
02-07 201 YEA!!!!!!  12
06-03  205      12

Offline harleymc

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #95 on: November 07, 2013, 06:31:10 AM »
@SouthSam7

Quote
Betty I mean that it's lying by omission if you don't tell someone you have hiv.  If you don't tell them you have hiv, then they would assume that you are hiv negative.

The big lie is by the people making the assumption that the world is entirely populated by HIV negative folks. It should not be our responsibility to challenge counterfactual 'magical thinking'.

Online mitch777

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #96 on: November 07, 2013, 09:06:50 AM »


And mitch777, I hear you on "bitching a lot".  You've got 31 years of this, a lot of that time a lot less hopeful than now, so as far as I'm concerned you can bitch bitch bitch away. In fact, please do. Optimism is good for you, but so is venting and expressing yourself.  My best wishes for what it's worth to you and your mother as time marches on. :)

Cicero,

Thanks for you kind words. They have plenty of worth.  :)

 I understand your fear of fading mentally as I seem to be living it.  I tend to believe that being newly diagnosed with todays meds and meds yet to come that you will likely not have to experience this problem. Even among us LTS, many/most don't have cognitive loss. Of coarse, I'm not sure what lies ahead for any of us but hope and faith are two things we must grab with a tight grip. It's not always easy.

Waking up each morning brings uncertainty for me but I try like hell to enjoy the day. :)

m.
31 years hiv+ (oct. 2013) with a curtsy.

Offline Basquo

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #97 on: November 07, 2013, 09:27:36 PM »


Oh yea, and my doctor still will not let me travel outside of the states yet. >:(



Why? Do you live with him?  :o  Sorry, I know that's flippant, but I've seen you up close and you are a perfectly capable world traveler! I can understand that he might be concerned if you wanted to go somewhere that was known to harbor issues that might compromise someone with a compromised immune system, but I don't see why you can't bloody well go where you please. You're not going to turn to dust should you choose to take a trip to Canada.

Offline NY2011

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #98 on: November 10, 2013, 09:44:44 AM »
the biggest personal challenge I now face is finding the courage to be comfortable with having this so-called "status" that has one of the worst social stigmas associated with it, and being able to dismiss the assumptions that people may make about my lifestyle and all that goes along with it.
10/26/2011 - SEROCONVERSION (hi fever+rash)
10/31/2011 - CD4= 154  VL>500,000 
10/31/2011 - started on Truvada+Prezista+Norvir
12/14/2011 - CD4= 750 VL=6412 (45%)
01/27/2012 - switched to Atripla
04/23/2012 - CD4=1,221 VL= 140  (47%)
06/22/2012 - CD4=1,224 VL= ud    (49%)
12/18/2012 - CD4=1,031 VL= ud    (51%)
09/16/2013 - CD4=1,151 VL= ud   ( 49%)
03/26/2014 - CD4=1,050 VL= ud

Offline watl

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #99 on: January 04, 2014, 06:50:59 PM »
I absolutely love this thread and am surprised I hadn't come across it before it was resurrected. It's real and without the usual varnish. It has those details one can only get from others who have lived with this disease other sites can only provide in the most clinical of descriptions. For myself, I want to know what possibly lay ahead other than "I have lived for x number of years with this and so can you."  What exactly does that mean anyway?  Am I doomed to periodic sicknesses?  And what does periodic mean?  Weekly?  Monthly?  Yearly?  These are the real stories I come here for and I sure hope there are many more of them.

Offline minatl

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #100 on: January 04, 2014, 08:04:55 PM »
I have spent my entire twenty years with HIV in Atlanta and hae managed to receive pretty adequate care, even during the slurry of misinformation that comprised the late 90s and early 00's. Might I ask where you are getting care?

jkinatl2--Wondering where you get care in Atlanta?  Several of us Atlantans here, and I'm new to town and newly diagnosed.  Not too crazy with my care so far....
DX'd 12/18/13
CD4 - 364 VL - 23K 12/18/13
Started Stribild 1/23/14

Offline Battle4Hope

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #101 on: January 18, 2014, 11:51:31 AM »
taking daily medication upsets me a lot.....i wish for a miracle pills to altleast stop daily doses :(

Offline Jeff G

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #102 on: January 18, 2014, 11:56:18 AM »
taking daily medication upsets me a lot.....i wish for a miracle pills to altleast stop daily doses :(

Maybe they can make gummy antivirals to make them fun to take . Sponge Bob would never make us sad at pill time .

I think we have room to reasonably expect a once a week or month therapy in the coming years . 

Offline Battle4Hope

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #103 on: January 18, 2014, 12:48:49 PM »
haha....ya u are rite@jeff,'anti viral chewing gum', LOL ;D....hey,thanx huh,u blew my worries for time being........lets hope for sum innovative medication !!!!!

Offline Jeff G

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #104 on: January 18, 2014, 12:53:58 PM »
haha....ya u are rite@jeff,'anti viral chewing gum', LOL ;D....hey,thanx huh,u blew my worries for time being........lets hope for sum innovative medication !!!!!

I do think some better treatment options will come our way but until then a good laugh every now and then is powerful medicine as well . 

Offline leatherman

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #105 on: January 18, 2014, 01:09:12 PM »
I would be remiss to not mention something first before posting some good news, Battle. First off, many many people take daily medications. It's actually the blessing of medications. In the early 1900s people were mostly dying by 40, today the avg life span is near 80-something. A large part of that is because people (poz and neg, old and young) take daily meds and fight off death daily. ;)

Secondly, I remember the days of taking 32 pills a day to keep the HIV at bay. Now I take 5 and think it's a blessing! But news out just this year talked about upcoming meds that may be once-a-month injections or maybe even once-evert-THREE-months injections. That's pretty spectacular!

Quote
This year, we learned much about a couple of "long-acting antiretroviral" candidates in the works. Most notable among these is GSK1265744 -- which, although it may need to be injected, is being engineered so that it only has to be taken once every four weeks at the most.

Early clinical trials involving these drugs have shown promising results. Now, to be sure, it's not a guarantee they'll work out, and many months of study lie ahead before we can even begin to entertain the idea that they'll become a part of regular HIV care. But it sure is an exciting concept to consider, all the more because it may be achievable.
http://www.thebody.com/content/73500/10-moments-that-changed-hiv-care-this-year.html?getPage=5

Just keep saying to yourself that the meds (and google LOL) are your friends. Thanks to the power of positive reinforcement (saying that mantra, taking your meds, and living another day) one day you may start to really feel that way too ;)
leatherman (aka mIkIE)


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

Offline CybertronEra3

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #106 on: January 21, 2014, 03:02:13 PM »
For me it's only been almost 7 months and I feel that the biggest hurdles are my lack of motivation, the self-imposed isolation, my constant irritability that just kills any chance for intimacy and navigating my role in life. Also the stress of keeping mum on my status from family members and longtime friends. I know one day I will disclose my status but until I reach certain physical health goals and an undetectable status that will not happen any time soon. The lack of motivation is my biggest challenge. I feel once I break through the rest will be quickly resolved. Before my new status I always considered myself a very self-aware individual but recently it's hard to look at aspects of life without the flash of the word P O I N T L E S S dominating my internal narrative. I know Im just in a bit of a haze and it will pass but till then it's a mental battle coupled with the one happening in my body. I'm a self professed secular humanist, and am determined to leave this world a better place then what it was when I was birthed into it. I feel my proverbial clock ticking away when left to my own devices.  Then there's also a maddening "fuck it" mind frame that leads to a call for anarchy. Alas this cosmic struggle will be played out by my choices alone and hope I can accomplish everything I can before I check out.

Offline darryaz

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #107 on: January 21, 2014, 05:04:01 PM »
taking daily medication upsets me a lot.....i wish for a miracle pills to altleast stop daily doses :(

A 90-something friend of my Mom's told me once that she LOVES her pills.  She is the only person in her family who lived beyond their 50's.  She completely attributes her longevity to the PILLS she takes every day.

So in the "big picture" taking a few pills each day may not be so bad :)

Online Joe K

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #108 on: January 23, 2014, 04:34:07 PM »
My biggest challenge is to decide what to do with my life, now that I am single.  In March, I will have lived with HIV for 30 years.  In June, I will become 60 years old.  I have lived as much of my life poz, as negative and I simply can no longer remember the feeling of not being HIV positive.  I have been involved with the HIV community, in some capacity for 28 of those 30 years.

I have lived at least two decades longer, than anyone told me I could, when I became poz and some days, I feel I am long past my expiration date.  I have battled depression all my life and combined with the damage from HIV and medications, I am in a body that is old and frail, decades before it should be so.

I no longer fear death and in some ways, will welcome it, simply to stop the hurt and heartbreak.  So many of my dreams were crushed when I became poz and while I have no regrets, I resent what has been taken from me.  Yet, I still question why I survived, when all of my friends did not?  I got to live, but I was left alone.  I was lucky, I am told, but many times I am not so sure.

HIV did not just damage me personally, it took away the only world I knew and left me to fend as a stranger in a strange land.  It killed my friends and each and every death is permanently etched upon my being.  I remain numb from the loss and feel it every day, when I look around and find myself and few others, left from those terrible times.

Just to be clear, I am doing fine and writing these words, helps me to clarify what my "real" issues happen to be, as well as sharing my experience, of which many others on these forum share.

I assume this is my "mid-life" crisis, but no flashy cars for my birthday.  Instead, I will step back and pause, to reflect on my utter good fortune in life and then figure out what I want to do for a "second act."

I do this, not only for myself, but for those I have lost, the ghosts in my mind, as I will never stop mourning their loss...  nor shed the feeling of abandonment. 

Nobody did it to me intentionally, but it still happened.

Joe

Offline Ann

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #109 on: January 24, 2014, 07:19:18 AM »
Thank you for sharing that with us, Joe. I know it wasn't easy.

((((((((Joe))))))))

Love you buddy. We're all here for you.

Ann
xxx
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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 Jeff G

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #110 on: January 24, 2014, 08:08:41 AM »
Thank you for sharing that with us . Hugs .

Offline RiderMan

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #111 on: January 29, 2014, 10:07:24 AM »
Hi everyone.  Good to read this email string, insightful and therapeutic for me.  I was diagnosed fall 2012 and no meds yet. My personal challenges are the same as when I found out cuz I am not being proactive to address them:

1) Disclosure to family - I did reach out to my dad and afterwards my sister, both were supportive however have not told my mom. She would be broken and I do not want to see her depressed (she is already battling this)

2) Every day without fail I think what an idiot I was. My brother died of AIDS in the mid 90s, I remember taking him to the hospital for a strange skin rash, asked the doc to do a blood test. I saw 1st hand what someone goes through, but I still put myself in a risky situation (unreal!)

3) I have a daugther who is 5, I know that one day I will need to tell her and it really worries me.  I love her so much and I worry that she will see me differently

4) I actually reached out to the person that I contracted HIV from, she recently said she stopped meds and will go with experimental meds, she does not trust her doctor; I am pressuring her to seek a new doctor but does not appear interested. From reading many posts I only see that meds are the true solution and not detoxification, vitamins etc (but I could be wrong)

5) starting meds; I had 2 doctors evalatuate my situation and both recommended different meds, this concerned me.
08-27-2012: contracted
10-17-2012: Positive
10-17-2012: CD4 - 555  VL 7700
11-06-2012: CD4 - 595  VL 20000

Offline zach

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #112 on: January 29, 2014, 12:58:40 PM »
loneliness, nothing else has even come close. it hurts

regrets, for a period in my life when I went out of control, high risk behaviors, and now i'm paying the price

stigma, I've learned to not only live with that, but challenge people about it. but losing so many lifelong friends with little fanfare really hurts

being totally poz outed in the small town where i'm from, everyone knows. tim knows where i'm from, i'm sure he can understand that

but what really killed me, my youngest son sat in class and listened to kids making fun of hiv/aids.... I've never in my life felt so ashamed as when he cried telling me that story

edited to add: and falling so completely apart when I was diagnosed. even without that little tid bit, I was already under incredible stress, I had worked really hard to build a life and felt like I was right on the edge. then the AIDS thing. and I shattered and broke, and lost everything i'd achieved. now I don't know how or if I can ever put it back together again. and I feel lost
« Last Edit: January 29, 2014, 01:15:57 PM by zach »

Offline thunter34

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #113 on: January 29, 2014, 01:00:37 PM »
but what really killed me, my youngest son sat in class and listened to kids making fun of hiv/aids.... I've never in my life felt so ashamed as when he cried telling me that story


Ouch.
AIDS isn't for sissies.

Offline thunter34

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #114 on: January 29, 2014, 01:10:08 PM »
jkinatl2--Wondering where you get care in Atlanta?  Several of us Atlantans here, and I'm new to town and newly diagnosed.  Not too crazy with my care so far....

I am in the ATL area, and I get treatment at the Grady IDP.  Now many would gripe about this, but overall my care has been downright decent.  And I have to say that the doctor I have now KICKS ASS.  He has twice now taken the time to call me at home to check up on me.  Once when my collar bone  was broken, and now when there was a potential blip/maybe more situation going on.  He has also given me email access to contact him with questions or concerns at any point in time.  I didn't get that good of care when I was under the usual insurance frame.

Now...as for the question, I sort of share an answer with Joe:  I have zero idea what to do with my life.  That's just being honest.  Put bluntly:  I was raised in a very evangelical environment and taught to expect the end of the world long before I would ever see gray hairs.  Then despair over my personal truth versus the fantasy world I was raised in led me to essentially try to take myself out passively.  Well...long story short, I pulled through all that and have come around to being a bit more fond of myself these days.  And yet...I find myself here at 43 without a clue as to what I "want to be when I grow up".  My collection of health issues keeps me uncertain about what kind and how much work I can do, but the biggest factor is that I am facing a future I never expected to have - for two different reasons.

That's it.  That's me in all my humbling truth.
AIDS isn't for sissies.

Offline SouthSam7

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #115 on: January 29, 2014, 01:50:16 PM »
After two years in Atlanta, I moved back to Birmingham. The uninsured care in Atlanta was atrocious. I thought I could literally die so I had to leave.

Offline thunter34

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #116 on: January 29, 2014, 07:38:02 PM »
After two years in Atlanta, I moved back to Birmingham. The uninsured care in Atlanta was atrocious. I thought I could literally die so I had to leave.

Don't know how you and I managed to have such drastically different outcomes in the very same system in the very same city.

While I agree that there are significant problems with regard to how the state handles ADAP, I remain skeptical that Alabama would be some land of milk & honey in comparison.  Seriously?

AIDS isn't for sissies.

Offline hivtalian

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Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #117 on: February 02, 2014, 11:43:00 AM »
Joe reading your post made me really emotional.
I've jut been diagnosed, not even 2months, and I'm 40.

And reading what you said about all your friends gone made me think about how things have changed in last years and how "lucky" all the newbies like me are, living in an era when hiv is not anymore the monster it was in the past.

It's also thanks to stories like yours, that "new" people like me can hope in a better future and can jump over all the depression that comes just after the diagnosis...

I guess from what you wrote that you had a life full of love of all those friends gone, who will stay inside you, and now they're there with you helping me, and all the people like us, to go on and fight.

I've been thinking "life is gonna be a shit", "it's all gone", "game over", I?ve been also thinking of suicide not even 2 months ago, but thanks to people like you, some friends here and a great doctor I really trust on, who gave me my pills straight ahead for treating my acute infection, Im' feeling pretty good and I'm very ...positive toward my future.

My biggest challenge concerning being positive?
It's not about death now, I know we have quite a good life expectancy.
It's not about pills, I know they're and they're gonna be my best friends forever , and I'm happy to swallow.
It's about, I must confess, my sexual life. I'm still feared to have sexual intercourse and I have to fight the automatic thought "I'm poisonous".
I'm feared to figure out how to behave with my sexual partners (telling or not my status?) and to do even safe sex (oral sex without condom is a big concern, but ...thank you Ann for your great advices...!).

But all I can say is that every day is getting better, and one month ago I'd never have thought I could be so "quite good" after just few weeks.

My pills work, no acute side effects so far and values are great (cd4 922 and VL 1024, starting from cd4 716 and >500000 end of december 2013).

So thank you all, thank you Joe for sharing (go on, life's worth living every day, and I'm sure you've reached that interior melancholic smile typical of wise people which is a gift for everybody), thank you Ann, and thank you research for giving us the chance to fight, and who knows, maybe, to win, battle after battle, this war.

Offline Cenlaguy

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  • Posts: 3
Re: What is the biggest personal challenge you face regarding your hiv status?
« Reply #118 on: February 20, 2014, 10:07:26 PM »
My biggest problem is dealing with this hiv rash that appears on my face. It's driving me crazy and idk what to do. I have been out of work for almost two weeks now. I have tried cortisone creams. Didt work. I have never had acne so this is very embarrassing. I don't even leave my house it's so bad. I went to my person doc yesterday and he have me a cortisone shot. I hope this helps. Does anyone know how I can make this go away? I just started my meds about 3 weeks ago as I was just notified I am hiv pos. I am taking stribild. My cd4 count was 314 and vl was 274,000 before starting meds. I don't go back for another lab work until next month. Someone please help if you have been through this situation. Thanks.

Offline Almost2late

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  • Posts: 100
  • "My disease stops with me" - Jeff G
Hi Everybody,

My biggest challenge was back at the end of January when I had PCP in the ER and stayed in the hospital with this brand new (to me) diagnoses. Thought of suicide constantly back then but I also thought of my family and what that would do to them, So I kind of got over it, sought of.. Now it's a few challenges that go hand in hand, I gotta go to work, I got KS and no one at work knows about it but they kinda know something is wrong.. I just tell people to mind their own business and they get pissed. Sometimes I get up in the morning and think to myself "fuck it, I'm not going" but I still manage to go in.. I could handle taking the pills, just don't know if I can continue going to work and getting OI or cancer and not telling people.. need these fuckin CD4's up so maybe I can get on with my life! >:(
Atripla, Bactrim, Azithromycin
Date         CD4's          VL
02/14     13  2.79%    228k+
03/14     52       7%       3k-
04/14     not done          2k-
05/14     184     9%       595
06/14     117     8%       235
End of June switched Meds
Tivicay, Truvada, Bactrim, Azithromycin

“HIV does not make people dangerous to know, so you can shake their hands and give them a hug:
Heaven knows they need it.”

Princess Diana

Offline Almost2late

  • Member
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  • "My disease stops with me" - Jeff G
It's almost Friday and Sunday I'm going to the AIDS walk so cheer up dude 8)
Atripla, Bactrim, Azithromycin
Date         CD4's          VL
02/14     13  2.79%    228k+
03/14     52       7%       3k-
04/14     not done          2k-
05/14     184     9%       595
06/14     117     8%       235
End of June switched Meds
Tivicay, Truvada, Bactrim, Azithromycin

“HIV does not make people dangerous to know, so you can shake their hands and give them a hug:
Heaven knows they need it.”

Princess Diana

Offline hope_for_a_cure

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I suppose reacting to the initial shock at diagnosis should be my 'biggest personal challenge' with regards to my HIV status.  It is not however.  The week I was diagnosed was really suppose to just be a trip down to see my mom and attend her 80th birthday party.  The problem was that I was so sick upon arrival that I was not able to do much more than stay in bed.  A quick trip to a doctor here landed me in the hospital for tests... no need to go into details as they are not germane to where I am heading with this.  I found out I had full blow AIDS.

OK... the first big challenge for me once I was able to breath w/o my oxygen concentrator again would really be the adjustment to this whole new lifestyle.  Additionally, the stress related to obtaining health care and meds on top of my relocation to SC proved to be a challenge.  My period of financial hardship ended up being a double edged sword actually.  I immediately qualified for ATRIPLA's Patient Assistance Program and MIAP status which took care of the $44,000.00 hospital room charge.  You have to be pretty destitute for that to happen and I was in that category at the time.  On the other hand I had to sell my home in Maryland (very very little profit) and close out that part of my life for good.   

The soul searching that I went through and redefinition period changed me the most.  My initial application for Social Security Disability was approved and thank goodness I had some good employment in my past that allows me a decent monthly amount.  Challenges such as rebuilding a life while living with family, starting over and regaining financial security from nothing, trying to get my 'effin' CD4 count to stay above 200 would be my biggest challenge actually.  I am basically pretty upbeat and the whole AIDS thing and now Cancer (lymphoma) thing have not done me in yet. 

I miss my old lifestyle living in the home I own, dating, traveling, etc. from time to time but realize that I am needed here as a caregiver for my elderly mom who would be in assisted living otherwise.  I truly am at peace for the most part... very rare for me to get depressed and honestly I could see where folks would.  Its just not in my chemistry for some reason.  Don't get me wrong, I have my days when it seems 'heavy' but those are not frequent.  Support from friends and family in my case is amazing.  A simplified life has actually done me good now that I think about it... by that I mean... living in a small town with family and no longer being stressed over keeping up a 100+ year old house that was way too big for me to begin with. 

Sorry... don't usually vent here like this.  Good thread.  Just a bit of insight for some of you who do not know me here.  I have met many of you and consider you to be friends for life!  Hope to meet others when I can make it to an AMG again. 

Best to all!

James

Offline drewm

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  • Posts: 1,044
  • Mmmmmm Hmmmmmm!
At this point, 4 years into this, the biggest challenge is keeping up with the required paperwork to maintain eligibility for medication assistance etc. Not to sound smug, because I certainly don't mean to, but some days I don't even think about having AIDS. At this point in my life, it's a nuisance but little else.
MAY 2010
VL>500,000 CD4>8

JUNE 2010 STARTED ATRIPLA

DEC 2010
VL>30 CD4>323

Atripla. Valtrex, Trilipix, Fluoxotine

Online mitch777

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  • wish i were here
James and Drew,

Thanks for the posts. I can relate to them both.

Mark
31 years hiv+ (oct. 2013) with a curtsy.

Offline ratcat

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     The biggest challenge for me is the fact that I decided to pay for all of my care out of pocket, and in order to do this, I live in Thailand, where I was infected.  I miss my family and the USA but I do understand that life in the States is much more complicated and expensive and that there is little freedom there anymore.  I don't miss paying taxes, high rent and looking at the rear view mirror every 10 seconds when I'm driving.  Taking a pill every day is not a big deal, but traveling for an extended period of time would be and is difficult because It's not easy to get my hands onto more than a six month supply of meds.  So, basically I am trapped in a foreign country, working a fun but not high paying job.  HIV has forced me to plan more....and has stopped me from making any big plans!  I hope that this makes sense.   

Offline zorro62

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  • Posts: 14
The loneliness. Fighting the urge to  resort to drugs and chaos to compensate.
Jan09 - tested neg
Apr 2nd 09 - tested poz
Apr 09: CD4:1178  %45   vl=350
Jul 09:  CD4:1380  %42   vl=2,900
Aug 09: CD4:987  %43  vl=2,350
Nov 09: CD4:1440 %48  vl=650
Mar 10: CD4:1030 %43  vl=880
Jun 10: CD4:565 %42 vl=3300
Sep 10: CD4:1030 %49 vl=8k
Dec 10: CD4:1059 %44 vl=38k
Mar 11: CD4:1130 %53 vl=17k
Apr 11: Started on GSK blind HIV Therapeutic Vaccine Trial
Jul 11: CD4: 908 %44 vl=29k
Oct 11: CD4: 787  %44 vl=13k
Dec 11: CD4: 1013 %41 vl=14k
Mar 12: CD4: 1003 %44 vl=17k
Jun 12: CD4: 897 %43 vl=7k
Nov 12: CD4: 800 %38 vl=12k
May 13: CD4:780 %31 vl=44k
Nov 13: CD4: 620 %31 vl=12k
Feb 14: CD4: 615 %29 vl=29k
Feb 14 (GSK trial stopped; placebo and med recipients react the same)

Offline phoenix

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deciding when and who to tell. been one year since I was diagnosed with HIV/AIDS and i  have told no one. it doesn't feel right not letting family and close friends know. I realize that the fear of rejection and shame are the things I need to work out. getting there just takes time.         on a brighter note thanks to all  of you for this site. this is my first ever post anywhere and after reading what I wrote I still got a long way to go in learning to express my thoughts.  thanks for listening                   
A positive attitude may not solve all your problems but it will annoy enough people to make it worthwhile.                              The point of the journey is not to arrive.

Offline Jeff G

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  • How am I doing Beren ?
deciding when and who to tell. been one year since I was diagnosed with HIV/AIDS and i  have told no one. it doesn't feel right not letting family and close friends know. I realize that the fear of rejection and shame are the things I need to work out. getting there just takes time.         on a brighter note thanks to all  of you for this site. this is my first ever post anywhere and after reading what I wrote I still got a long way to go in learning to express my thoughts.  thanks for listening                   

Welcome to the forum Phoenix . I think you will find many other people in the same situation as most of us have struggled with the same issues at some point .

I'm happy you decided to join us . 

Offline Theyer

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  • Posts: 2,490
  • Current ambition. Walk the Dog .
deciding when and who to tell. been one year since I was diagnosed with HIV/AIDS and i  have told no one. it doesn't feel right not letting family and close friends know. I realize that the fear of rejection and shame are the things I need to work out. getting there just takes time.         on a brighter note thanks to all  of you for this site. this is my first ever post anywhere and after reading what I wrote I still got a long way to go in learning to express my thoughts.  thanks for listening                 
Welcome.
Re--- expressing your thoughts. Just bash away dear heart and if you create a fire storm jump in quick say sorry and blame it on getting the dosage off recreational drugs wrong coz 97.5% off regular posters have been there.

If that horrifies you then say someone slipped you a Mickey Finn 98% off regular posters have used that one 85% more than once.

Apart from the not telling how are you otherwise.
And welcome again.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Theyer

  • Member
  • Posts: 2,490
  • Current ambition. Walk the Dog .
Hi Everybody,

My biggest challenge was back at the end of January when I had PCP in the ER and stayed in the hospital with this brand new (to me) diagnoses. Thought of suicide constantly back then but I also thought of my family and what that would do to them, So I kind of got over it, sought of.. Now it's a few challenges that go hand in hand, I gotta go to work, I got KS and no one at work knows about it but they kinda know something is wrong.. I just tell people to mind their own business and they get pissed. Sometimes I get up in the morning and think to myself "fuck it, I'm not going" but I still manage to go in.. I could handle taking the pills, just don't know if I can continue going to work and getting OI or cancer and not telling people.. need these fuckin CD4's up so maybe I can get on with my life! >:(

That broken down bike is running away with it,s self. It takes time to get over what you had, its hard, it will not be helped imagining worse things. Having typed that ,I also will admit to doing it to. Trick is to then quicky celebrate the fact that I am only day nightmaring and flip it into celebrating the absense off a pesky OI.

Ain,t PCP enough or are you by nature just greedy dear heart. ?
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline ARMANDO

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  • Posts: 249
MY BIGGEST CHALLENGE
 that i no longer know how to live,i no longer know how to love ,i no longer know how great pain and desperation can be,i no longer want to know or be known.I ONLY EXIST BUT I NO LONGER KNOW HOW TO LIVE!!!TIME PASSES ,days turn into weeks ,weeks turn into years,i see DEATH AND DYING all around me but still i remain.I know this sounds like it came from some book but this is my reality and the i the only thing i look forward to is sleep.When i sleep ,i escape life for another day.








Offline JosephP

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  • Posts: 12
  • Brother, I am getting old!!
deciding when and who to tell. been one year since I was diagnosed with HIV/AIDS and i  have told no one. it doesn't feel right not letting family and close friends know. I realize that the fear of rejection and shame are the things I need to work out. getting there just takes time.         on a brighter note thanks to all  of you for this site. this is my first ever post anywhere and after reading what I wrote I still got a long way to go in learning to express my thoughts.  thanks for listening                 

Exactly my biggest personal challenge!!! 6 months into this new "stage" of my life and I am still scared and afraid to "Let the Cat Out"... The daily meds are not a problem and I am actually almost anal about taking it...I always have one pill with me at all times and I feel like something is missing if I am not carrying one.

And the old sexual life!!! It has come a grinding halt! I just don't know what to do so it has stopped!..
Keep looking forward!

Offline drewm

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  • Posts: 1,044
  • Mmmmmm Hmmmmmm!
I am reading a lot of comments about "the new normal" whatever that may be. It has dawned on me that I really barely remember my life before May of 2010 and if I choose to dwell on that date, everything becomes pre and post dx. I don't have any magic advice for how to live our lives and can only offer up what I have done.

The first year was rough but at times rewarding when the labs kept coming in showing progress. Sexual prowess eventually returned and is as good as it ever was. (I am, however, in a relationship and he is also poz). Second year became even easier, third year the same. Now, it's juggling paperwork etc.

I simply refuse to let AIDS manage my life...I manage it. My psychiatrist helps but life really has moved on.
MAY 2010
VL>500,000 CD4>8

JUNE 2010 STARTED ATRIPLA

DEC 2010
VL>30 CD4>323

Atripla. Valtrex, Trilipix, Fluoxotine

Offline ARMANDO

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  • Posts: 249
thats  good attitude to  have right now but i suggest you wathe the HBO SPECIAL THE NORMAL HEART.IT GIVES A VERY ACCURATE PORTRAYAL of what the early years were like when we didn,t have ANY CHOICES.WE have come a long way since then .great new drugs,great variety of doctors,agencies to help us when we no where else to turn.I remember all to well like it was just yesterday,when our social life consisted of funerals and hospital visits but now we have HOPE.

Offline Kmjohnson1314

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    • Love Every Day
Thankfully I haven't had any side effects of my drugs.  I've been on Atripla for almost two months now and it's done wonders. My biggest issue is feeling like my boyfriend isn't interested in me. As in, lack of sexual activity. Like, I know it's for the better that we don't get too hot and heavy, but sometimes I convince myself it's more because of me than my diagnosis.

At first, I had a lot of troubles simply being alone. Whenever I'd get home from work I'd start getting into my head and thinking all these dooming thoughts, getting myself worked up into a sobbing frenzy. I took steps to ensure I would spend as little time alone by having friends over (then, I got a dog. That helped A LOT) or by going to a friend's house.
4/21/14 - CD4:669, VL:677
4/4/14 - Enter Atripla
2/27/14 - CD4:493, VL:~57.6k
1/23/14 - CD4:493, VL:~52.3k
1/3/14 - Diagnosed HIV+

Offline Jeff G

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  • How am I doing Beren ?
Thankfully I haven't had any side effects of my drugs.  I've been on Atripla for almost two months now and it's done wonders. My biggest issue is feeling like my boyfriend isn't interested in me. As in, lack of sexual activity. Like, I know it's for the better that we don't get too hot and heavy, but sometimes I convince myself it's more because of me than my diagnosis.

At first, I had a lot of troubles simply being alone. Whenever I'd get home from work I'd start getting into my head and thinking all these dooming thoughts, getting myself worked up into a sobbing frenzy. I took steps to ensure I would spend as little time alone by having friends over (then, I got a dog. That helped A LOT) or by going to a friend's house.

Welcome to the forums . It does get better in time and coming here to give and get support may help you as well .

Please be aware that the forums are searchable so if you are comfortable having your name and face associated with this forum we are comfortable seeing it .  ;)

Offline craftypoz

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  • Posts: 4
For me the most challenging thing is, as I approach 20 years living with HIV without symptoms or issues, that I grow more anxious about when things will escalate, when symptoms will appear, when it won't be possible to go a day or so without thinking about being poz. Taking meds once a day serves as my reminder, but I don't linger on the thought. But the longer I live, the more anxious I become, wondering when things will change, when symptoms will be more frequent, more visible.
HIV+ since May 1995

Offline tom g

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  • Posts: 1
i battle fatigue every day so ive learned to take many breaks..it helps and i dont ever appologize for taking one..im blessed to have a neg roomate who cares and supports me..wouldnt know what id do without him..

Dan...Plz keep taking ur meds on time..it helps set an example for ALL of us. Your never alone if you dont want to be

Offline tryingtostay

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  • Posts: 145
I think for me,  even with my unique scenario, it has got to be the Brain Fog.  I've been describing it to my doctor as dizziness; didn't know it was called brain fog.  It has been a daily thing for me from morning to night.  Sometimes impairing my cognitive functionality to a noticeable difference.  It gets me down as-well. 

Labs:
March 2014: CD4 1730 @ 41%, VL 87 without meds
May 2014: CD4 1309 @ 42%, VL <20 without meds

Offline newbie92

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  • Posts: 15
The biggest challenges for me are... Facing reality. Understanding that this is life now. I fear that my life will be cut short. I fear that I will not be able to attend med school any longer. I feel like I can not talk to my family because I'm afraid of judgement and criticism. I just want to feel normal.

Online initforlife

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The biggest challenges for me are  One is not hating the guy who gave this to me. Oh how I remember that day in march when he texted me and said please call me. I was at work he called told me I needed to be tested he had hiv.  I drove straight to health dept  right then got tested Then I call him back told him not to be upset we were in this together no matter what my results were. I also told him there would be no blame game as we both had sex unprotected. so both at fault. the second would be I wished I have never told a very close family member who I thought I could trust. turns out I couldn't and she told the rest of my family. Like to say you find out who your true friends are and who you can trust . anyway I'm scare to death people around me will now find out  I live in a small town and they still do not accept things or people who they think are different.   Third having family who now know about my hiv act as though they are going to catch something from me! Really read up on it. very hard to catch unless we are having sex is what I want to scream but no I just say it is not that easy to get. and I go on  and the one last thing  again   is not hating the guy who gave this to me now, since he told me it is hard for him to see or talk to me as I made him think about the hiv to much! Ha thanks to him I have to think about it every day.  the meds are not a problem to me as of right now I have other health issues before this so already on meds.  Thanks for this site. and I just wanted to add to all the one who are just finding out they have hiv.  You can over load your mind at first take and deep breath and walk away from google for a while then come back  some stuff I read at first scared me and then I saw it was dated in early years.. This site has been and continues to be my life saver!
I should have known he was bi

Offline Poppy33

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Having a freakin headache everyday and trying to gain the weight back that I lost.ugh!

 


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