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Author Topic: What is the biggest personal challenge you face regarding your hiv status?  (Read 29514 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

  • Member
  • Posts: 5,044
  • 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

  • Member
  • 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

  • Member
  • 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

  • Member
  • Posts: 109
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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  • Posts: 540
    • 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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  • Posts: 12,239
  • 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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  • Posts: 712
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

  • Member
  • 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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  • Posts: 12,239
  • 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

  • Global Moderator
  • Member
  • Posts: 10,050
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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  • Posts: 2,069
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

  • Member
  • Posts: 789
  • 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

  • Global Moderator
  • Member
  • Posts: 10,050
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

  • Member
  • 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

  • Member
  • 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

  • Global Moderator
  • Member
  • Posts: 10,050
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

  • Member
  • Posts: 126
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

  • Member
  • Posts: 3,258
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

  • Member
  • Posts: 1,475
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

  • Member
  • Posts: 6,033
  • 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

  • Member
  • Posts: 153
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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  • Protected phone sex
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

  • Member
  • Posts: 789
  • 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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  • Ninja Please
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: 7,251
  • 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, 25 mg 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


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 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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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

  • Member
  • 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

  • Member
  • 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

 


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