HIV Survivors Fatigue, Stigma, PTSD:

[jm1953]

As a LTS of almost 30 years, about half my life, I join the shrinking group of us who are the trailblazers of this disease and historians.  We watched the horror of numbers of friends and loved ones pass.  We were the ones who withstood AZT until studies were released for PI's, 3TC and others that really saved our lives.  But not without consequences of having endured the virus for 20+years, the endless side effects of new medications, depression, and aging, only to name a few.  But, for me, and apparently others, a stigma seems to have evolved about LTS by people, and even physicians who didn't experience what we did.  I'm tired of trying to look like I don't have AIDS at this point through countless Sculptra treatments, working out, testosterone, and lot's of explaining to people when they say "you don't look good!"  What we have to go through just to look somewhat normal because the signature "AIDS look" is hardly visible among newer patients anymore.  I've encountered unkind remarks by family, physicians, my family, and even friends who have HIV but not hardly as long as us.  There are very few support groups of therapists who work with LTS patients.  Even my new HIV doc, who I'm not sure I will stay with,  looked at me as almost an alien, boasting that about half of his patients are folks uninfected taking Truvada to prevent getting HIV which I take major issue with.  I'm glad we have this forum to relate to one another with.  Without it I surely would be very lonely and misunderstood.  We get it, so many other people don't.  Just like having depression, which I also have.  I'm attaching a long article that appeared in POZ mag in 2013 by an LTS describing the stigma and challenges he faces and research he has done on other LTS.  Take a read if you want.  Couldn't copy the link, only the copy.  Just needed to get this out.  Below is the copy:


Thu Jul 3, 2014 8:32 am (PDT) . Posted by:
"jules levin" jules72orange
www.natap.org

There is no discussion by NIH, NIAID & research leaders about planning & preparing for health, social & other needs for aging HIV population

HIV & Aging: Psychosocial, mental health, and behavioral issues of aging with HIV - (06/16/14)

"As a substantial proportion of people with HIV approach retirement age, policy makers need to develop new policies or adapt the existing ones to improve their social and economic outlook. For example, reforming retirement benefit programs could allow people with HIV to remain in the workforce as long as possible, and providing better integrated housing models could remove some of the barriers to subsidized housing and ensure that retirement homes and long-term facilities become more welcoming places for older people with HIV.

"Aging for people with HIV may be more challenging than for the general population because of HIV-related stigma, loss of friends and social networks, and the detrimental effects that HIV and antiretroviral treatment have on normal aging processes. Older people with HIV are more likely to experience mental health and neurocognitive impairment than their HIV-negative counterparts, as well as more social isolation as a result of decreased social participation and engagement. People develop different approaches for coping with the challenges associated with aging with HIV.”

"HIV are less happy, less resilient, and have poorer attitudes toward their aging”

"They also report lower physical and mental health, and experience more negative life-events, anxiety, and perceived stress”

"The more medical comorbidities someone experiences, the poorer their quality of life [11,12].”

About 50% of people living with HIV will develop HIV-associated neurocognitive impairments and disorders (HAND)……..Cognitive function in HIV is associated with a host of medical and psychiatric factors [24,25,27], including demographics, HIV disease severity, substance use, and comorbid conditions [24,25,28-31]…….study of people living with HIV (n = 106) found that older age was associated with about a five-fold higher odds of developing memory deficits: about half of those over age 50 had measurable memory impairment [32]. In one study, the driving performance of older people with HIV was less efficient and slower than their younger counterparts

Older adults living with HIV are at an increased risk of social isolation because of less social participation and shrinking social networks. …..As people with HIV age, they may lose friends and find it increasingly difficult to make new social connections [19,42,43]. In some cases, they may find it easier to be alone to avoid stigma or discrimination, or they may not have the energy to be socially engaged.

In qualitative studies exploring the experiences of older adults with HIV, the main theme is uncertainty about the future and the unpredictability of the aging process [9·,18,19]. Older people with HIV often compare themselves to their HIV-peers and report experiencing an earlier and more rapid decline in health, which increases anxiety about the future [18,19]. Other uncertainties include concerns regarding the ability of healthcare providers to provide high-quality care at the intersection of aging and HIV; the financial situation and transition to retirement, including adequate pension; the availability of appropriate long-term housing; and the decreasing ability to care for themselves [20·]. In addition, older adults with HIV often need to negotiate multiple identities and the resulting stigma(s) attached to those identities, including ageism, homophobia, and HIV-related stigma [12,18]. Although ageism plays a role in the overall stigma experienced by older adults with HIV, some also report experiencing stigma and rejection from their HIV- contemporaries [19]. Many express concerns about being discriminated against by other older people if they have to move into old-age care facilities [18,20·]. Whereas disclosure is important for people with HIV to receive social support, perceived and internalized stigma affects disclosure among older adults living with HIV [21,22].

The prevalence of depression among older adults with HIV differs according to subpopulations and geographical settings. In a Brazilian study of people with HIV over age 60, 28% experienced major depression, and women had 10.65 times higher odds of being diagnosed with major depression (95% CI 8.96-12.33) than men [15]. An Ontario study of 1129 older adults with HIV found that, compared with heterosexual, bisexual, and gay men, women had the highest mean scores for depressive symptoms (using the Center for Epidemiologic Studies Depression Scale) [16]. However, in a study of older adults with HIV in the USA (n = 904), similar proportions of men and women experienced depressive symptoms (61% for both groups) and loneliness (34 and 28%, respectively) [17]. Differences across the studies may be because of different sample compositions and different measures or cutoffs to evaluate depression and depressive symptoms.

In terms of sex differences, Storholm et al.[17] found that men were significantly more likely than women to report a lack of positive relations with others (50 vs. 39%), purpose in life (51 vs. 39%), self-acceptance (51 vs. 42%), and environmental mastery (53 vs. 35%). Mediation analyses showed that individuals with greater minority burden (i.e., the number of minority statuses, including being gay or bisexual, nonwhite, disabled, low-income, foreign-born, and speaking English as a second language) experienced greater HIV-related stigma, which was associated with greater mental health burden. Another study, however, found that gay and bisexual men reported higher mental health-related quality of life than heterosexual men and women [16], and gay men reported less HIV-related stigma than women or heterosexual and bisexual men, which may be associated with the supportive networking within the gay community, better programs and services from AIDS service organizations, and the experience of having lived with HIV for many years.

The more medical comorbidities someone experiences, the poorer their quality of life [11,12]. In a United States multistate study, 94% of people with HIV aged 50 years or older (n = 452) had at least one other chronic illness, with an average of three comorbid conditions (including depression) [13]. Commonly reported chronic illnesses included high blood pressure (46%), chronic pain other than headache and back pain (45%), hepatitis (39%), arthritis (35%), diabetes (21%), and major depression (14% reported symptoms consistent with major depression). The presence of more chronic conditions was also associated with decreased functioning [11,12]. Another United States study of 262 people with HIV found that older people with HIV had significantly higher medical comorbidity burden (as measured with the Charlson Co-morbidity Index): almost half had at least one major medical comorbidity, including diabetes (18%), neurocognitive impairment (15%), and malignancy (12%) [11]. In a cohort study of 1230 injection drug users (IDUs), HIV+ participants had an increased risk of frailty (odds ratio = 1.66; 95% confidence interval, CI 1.24-2.21) [14], and depressive symptoms were independently associated with frailty.

"Summary: As this field of research evolves, many research gaps need to be addressed, including a better conceptualization and measurement of successful aging and the development of high-quality integrated care, programs, and services tailored to the needs of older people with HIV. A more integrated policy response is needed to improve the psychosocial and economic well being of older people with HIV."

[Wade]

Hey JM
I hear what your saying, I think I was infected before this disease even had a name.
I too have had injections in my face, and lost all my body fat,
Only to have it come back in all the wrong and abnormal places.

I was a hot shit in my younger days , which made it all the harder
When my appearance changed seemingly over night.
Some of it is age, combined with HIV and the drugs we took in the early days,
Don't really know. Sometimes I wonder what I would look like if I were aloud to age
Normally. I try not to go there anymore , I don't attempt to explain my appearance
I am just me now , only different !  Most times I am proud to have survived those horrible years ,  there was no decent health care or financial support.we were alone and on our own .

If we were lucky enough to survive we , had to pull our selves up by our boot straps
And move on which was no easy task. It was like starting over, makes me thankful to be where I'm at in my life. This is my support group now , some listen ,some don't
Some understand, some don't. I still feel better spouting off !
Nice to meet you JM , Wade

[Pozinmaine]

Hi there,

Thirty years positive here.  Things are certainly different for LTS.  Hearing someone else articulate it has helped me, on this very sleepless night, to feel less alone.  I am only now beginning to understand all that has happened to me, to my friends, to my world.  AIDS is still unfolding for each of us in different ways.

Most LTS not only deal with the toll of their own disease and their treatment, but have the distinction of also watching it ravage the lives of others.  It's a double whammy and many of us are in rough shape mentally and emotionally as a result.  We have a very different experience than more recently infected individuals.

The conversations are beginning.  I'm hoping that the formation of groups like Let's Kick ASS will help to get the ball rolling and ensure that we are directing our own futures. 

I'm glad to not be alone in this...these forums are a great support even for a lurker like me



 

[aztecan]

Hi all,

I will have my 30th "anniversary" in July, although it is likely I was infected prior to that.

I know what you mean about being the outsider. I was told by a young man entering the prevention field that we LTS's are from a bygone era and "we don't think of HIV that way any more."

Pompous twit.

I am an older gay man, who has had all the slings and arrows that HIV and the early meds can throw.

I had a hump surgically removed from my back, but still have the goiter-like neck, chipmunk cheeks, and even growths on the back of my head, which were also removed, but have returned. Then, we have the visceral fat, that no exercise even touches.

I only mention all of the lipo issues because, invariably, my well-meaning friends decide I need a partner/lover/husband and go about setting me up with someone.

I don't feel desirable, and have explained I don't want a matchmaker. Oh, and of course, everyone they dig up is negative, who, for the most part, haven't a clue what our lives are like.

OK, enough of rant, but it feels good to know I can do that here.

HUGS,

Mark

[Wade]

Hey Mark
If you see the pompous little twit again ,
give him a swift kick in the ass from me, all of us are from a by gone era ?
Seriously ! he said that ?

I had my hump removed over ten years ago now, luckily mine has not come back.
Don't you just love going over your medical history with one of those youngsters.
Most are completely clueless  when you try to explain your surgery's and lipo issues.

I try to keep a good attitude, and enjoy my life, but sometimes you just need to bitch ! It is therapeutic, especially when conversing with your peers who can relate,
and is nice to get others perspectives.

At least they don't snap on rubber gloves to take
your blood pressure anymore... LOL

 

[aztecan]

At least they don't snap on rubber gloves to take
your blood pressure anymore... LOL

Ain't it the truth! 

[flashdance]

Can I add to this discussion from the "other end"?

Recently, my mother has been diagnosed with "dementia". Now I (and family) are waiting for her to pass in Medicare supported hospice. But we ran into a problem of having Medicare cover her during her last days in hospice because Medicare requires a more specific diagnosis of "dementia". My mother went into the hospital recently and the hospitalist had to diagnosed my mother with "dementia-Alzheimer's" before we could move her into hospice.

Turning this back to a person living with HIV-AIDS....Has Medicare changed their requirements for an HIV+/AIDS person to have a certain collection of specific Medical codes before an HIV person is allowed to be moved into hospice?

[aztecan]

Medicare will pay for only a certain number of days in hospice. I believe it is 100 or 180.

After that, the individual has to find another payor source. Medicaid may help, depending on how the particular state handles it.

As far as people with AIDS going into hospice, that person would need to literally be on death's door with no expectation of improvement.

It doesn't happen all that often anymore. Now, people are more likely to find their HIV well controlled, but that they now have lung cancer, etc.

HUGS,

Mark

[Buckmark]

Sorry I'm a bit late to this party.  It's just a fact that us LTS'ers from the pre-HAART days are becoming a rare breed.  We're inconvenient to many of the HIV and AIDS services organizations.  In some ways, it is not different from the way the elderly population is often viewed as an inconvenience (at least here in the US).  Unfortunately, I just don't think there are too many people interested in LTS'ers quality of life, so the best you can do is advocate for yourself.

There's a young gay HIV+ guy at the gym I go to, who is about as out and proud about his HIV as anyone I have ever seen.  He has no less than 3 biohazard tattoos -- including one large "tramp stamp".  Honestly, you can't help but stare, so a few weeks ago  made a comment to him one day to the effects of "nice tattoos".  He immediately told me (and by extension the last of the locker room) that he got them because he is HIV+, and proceeds to tell me a bit about his story (I must look like therapist, people like talking to me).  He's definitely the "out and proud" type both about being gay and HIV+.  He says:  "It's not like it used to be -- people don't get sick any more."      I told him to keep taking his meds -- I could only have dreamed it would be like that when I got HIV 25 years ago. 

Times have really changed.  Who would have dreamed of having this conversation in public way back then?  No one around us seemed to take note or even bat an eyelash.

I feel like I'm officially an old coot.  I'm going to start yelling at the neighborhood kids to get off of my lawn.

[aztecan]

Sorry I'm a bit late to this party.  It's just a fact that us LTS'ers from the pre-HAART days are becoming a rare breed.  We're inconvenient to many of the HIV and AIDS services organizations.  In some ways, it is not different from the way the elderly population is often viewed as an inconvenience (at least here in the US).  Unfortunately, I just don't think there are too many people interested in LTS'ers quality of life, so the best you can do is advocate for yourself.
...
I feel like I'm officially an old coot.  I'm going to start yelling at the neighborhood kids to get off of my lawn.

I agree, most of us LTS people are relegated to and old-timer's support group. The young folk don't really want to hear from us.

That is I'm here. At least people don't tune me out - at least not completely.

HUGS,

Mark

[aztecan]

I think I needed coffee this morning. That post is has a few nasty typos.

[OneTampa]

We "experienced travelers" know the main and back roads as HIV Survivors.

Newbies would be well advised to program their GPS with our knowledge.

 

[wolfter]

We "experienced travelers" know the main and back roads as HIV Survivors.

Newbies would be well advised to program their GPS with our knowledge.

 

I like that!!!!!   

[guitargal]

I had the idea to apply for a grant, do a study on stigma/discrimination..has it become easier for the more newly diagnosed, perhaps since 2000 as opposed to LTS pre protease?..have the efforts in education about HIV/AIDS made it easier in a socio/economic ways for the younger crowd as opposed to us older folks?
Do the older LTS still feel stigmatized and discriminated ?  not "out", so many questions if you think of it..us vs them so to say…me being rural and not knowing many HIV people I thought it would be interesting to find out more about how people are coping now as opposed to then and are the efforts of ASO's and education helping make lives better, more normal for the people diagnosed the past 10- 15 years…?

[Joe K]

We "experienced travelers" know the main and back roads as HIV Survivors.

Newbies would be well advised to program their GPS with our knowledge.

 

Many of them don't even know that we exist.  Our story cannot be told in the 140 character limit of Twitter.  We are living history of lives with HIV, our story can never really be told, as it had to be lived.  It's one of those time that you really had to be there to understand in its entirety.  We are rarely "media darlings" and with attention spans, that are now measured in minutes, if not seconds, our story has been surpassed by many of the treatments that saved our lives and that we lived through to still be here.

In a way, I envy the newbies.  I would rather be young and infected, with faint memories (if any) of a time long ago, when there was simply no hope.  We have lived a very special life, one impacted by more things, than I expect any of us ever imagined, yet somehow, we not only survived, we thrived.

While I want to see more research into PTSD and survivor's syndrome, it does not bother me that the newbies care little of my history.  My life belongs to me and it has served me well.  We all survived through horrible odds.  Sometimes, just remembering how challenging my life has been, gives me great pleasure.  Sure parts hurt, but I still came through it, to survive with folks like you and I just can't see a downside.

Joe

[Wade]

Well put OT !
Some of us have voiced our personal experiences,
I think we are all in agreement we had it tough, but made it through.
Many of us do still have a constant up hill battle , because of our age ,and
HIV combined. Just thought about that on my way to get labs done today.
What a pain in the ass ! Doing this the last 25 years.
For that we are all proud in our own way. We are all SURVIVORS !

OT....
Those were two powerful sentences   ...
Thank You

[jm1953]

Lots of great posts on this thread.  I think we all agree we are in a group all our own.  Many times misunderstood or ignored because people don't get it or didn't go through all we did.  What makes me really crazy are people with HIV judging others at later stages sometimes even being HIV competitive.  All of us in this forum have our individual stories and experiences and I'm glad we can speak freely about them without feeling being judged.  I am very involved with American Veterans with Disabilities.  Some of their stories, the nightmares they experienced and witnessed during their tours are beyond belief.  And not being able to access the help they need to deal with their PTSD in  particular on a timely basis is unacceptable.  As the result many veteran's adjustment to civilian life is extremely tough.  Their families don't get what they have been through, many feel isolated with no one to talk to that can relate.  Many times I see similarities with the war we fought in the 80's and 90's seeing countless friends and loved ones die horrible deaths many in their 20's and 30's.  We had more support then, but not now.  Working to help get veterans on going counseling and involved in support groups is one of my missions.  Now if some organization or the government would step up to acknowledge and help those of us who are still in bereavement overload from the ravages of our war, that being AIDS and being Long Term Survivors.

[OneTampa]

Well put OT !
Some of us have voiced our personal experiences,
I think we are all in agreement we had it tough, but made it through.
Many of us do still have a constant up hill battle , because of our age ,and
HIV combined. Just thought about that on my way to get labs done today.
What a pain in the ass ! Doing this the last 25 years.
For that we are all proud in our own way. We are all SURVIVORS !

OT....
Those were two powerful sentences   ...
Thank You

Thank you!

OT

[OneTampa]

I like that!!!!!

Thanks!

OT

[wolfter]

One must wonder if we don't start to feel guilty when we lose the depression and sadness that we carried for so long?  How long must we feel obligated to mourn and be tormented by all we've lost?

I've found that I've mostly gotten past the extreme grief that I held so tightly for so long.  During times of recall, it no longer pushes me deep into that dark abyss.  It's more of momentary episodes instead of prolonged agony. 

I'm extremely grateful that I've reached the point in time where I've allowed myself forgiveness and accepted that I'm allowed to be happy.  I've truly reached the point where HIV does not encompass every moment of every day but instead is simply a virus that lays dormant within its host.

[BT65]

I think OT writes for a magazine, or at least he should! Those are very well put sentences.

Like what you said also Greg.

I still think about HIV a lot, but mainly because of these damn bone issues.  Maybe someday I also can move past it a bit....

[Joe K]

One must wonder if we don't start to feel guilty when we lose the depression and sadness that we carried for so long?  How long must we feel obligated to mourn and be tormented by all we've lost?

I've found that I've mostly gotten past the extreme grief that I held so tightly for so long.  During times of recall, it no longer pushes me deep into that dark abyss.  It's more of momentary episodes instead of prolonged agony. 

I'm extremely grateful that I've reached the point in time where I've allowed myself forgiveness and accepted that I'm allowed to be happy.  I've truly reached the point where HIV does not encompass every moment of every day but instead is simply a virus that lays dormant within its host.

Greg,

I could not agree more with your sentiments.  It's been a very long time since I was able to remember the early days, without going off the rails for a few weeks.  It took a lot of hard work, but now, when I remember those days, I recollect the joy they brought me and though I suffered great loss, the reason the loss was so great, is because of the people involved.  People who knew and loved me just the way I am.

Joe

[BT65]

It took a lot of hard work, but now, when I remember those days, I recollect the joy they brought me and though I suffered great loss, the reason the loss was so great, is because of the people involved.  People who knew and loved me just the way I am.

Joe

Yes!  And I always wonder, what if these people had lived?  Then I would have had a cohort near me. 

Right now, I'm trying to heal from bone loss, I hurt my leg again today so who knows what I did, I'm not going to tell anyone other than you all right here! Lol.

Meanwhile, I have a turkey neck, flab on my abs that will never come off, and who do I want to sleep with?  My cat curled up next to me lol.

Betty

[jm1953]

Thanks for your comments regarding this topic.  It would be interesting to investigate this one year from now and see what comments come up.  But as most of us have been told by docs, therapists, or recovery, one day at a time. 

[CMilan]

Reading all the comments here has made me feel a bit less alone at the moment. I have lived with AIDS since 1988, and now that I have gotten to the ripe age of 51 1/2 (lol) I thought I had everything under control. I haven't had major issues in the last few years. I have survived a broken back and lymphatic TB (that one almost killed me). But just yesterday a loved friend passed away and all the feelings I thought I had surpassed have come back roaring their ugly head. I just feel alone and in need of someone who understands what the last 28 years have been. I have lived with AIDS longer than I have been alive. It is a miracle, but feel so loney at the moment. The warning says no one has posted to the topic in more than 60 days, so there may not be anyone out there reading this. I just had to get this sadness and loneliness off my chest.

[Jeff G]

Reading all the comments here has made me feel a bit less alone at the moment. I have lived with AIDS since 1988, and now that I have gotten to the ripe age of 51 1/2 (lol) I thought I had everything under control. I haven't had major issues in the last few years. I have survived a broken back and lymphatic TB (that one almost killed me). But just yesterday a loved friend passed away and all the feelings I thought I had surpassed have come back roaring their ugly head. I just feel alone and in need of someone who understands what the last 28 years have been. I have lived with AIDS longer than I have been alive. It is a miracle, but feel so loney at the moment. The warning says no one has posted to the topic in more than 60 days, so there may not be anyone out there reading this. I just had to get this sadness and loneliness off my chest.

Welcome to the forum . Im poz over 30 years myself so I understand the ups and downs all of us LTS go through . I’m looking forward to hearing more from you.

[leatherman]

hello cmilan! welcome to the club of we few who have lived being HIV+ longer than we lived HIV-. (there was an estimate that there are only about 50K LTSes left from those days, so I would imagine that number is, sadly, now lower since this estimate from a couple of years ago) Although no one has posted in this thread for a while, everyone who has posted in this thread got a notice that new posts are here.

unfortunately, I don't think we ever get beyond the sadness/loneliness. While days, months and sometimes even years will go by, it only takes one word or one event to be right back there in the middle of all those terrible feelings. I also think that we don't get enough credit (or give it to ourselves) for living with all these feelings all these years. I mean when seeing a cloud, hearing a song, visiting a location, or hearing a turn of phrase will suddenly put you on the brink of tears again, well, there's something to say for all the days we don't break down.

although I am sorry to hear about your loss of a friend, welcome to the forums, and we hope to hear more from you.

[Joe K]

unfortunately, I don't think we ever get beyond the sadness/loneliness. While days, months and sometimes even years will go by, it only takes one word or one event to be right back there in the middle of all those terrible feelings. I also think that we don't get enough credit (or give it to ourselves) for living with all these feelings all these years. I mean when seeing a cloud, hearing a song, visiting a location, or hearing a turn of phrase will suddenly put you on the brink of tears again, well, there's something to say for all the days we don't break down.

Mikie,

I want to thank you for the above.  I've never quite put my finger on this issue and your words brought a clarity to my thoughts, regarding this subject.  Maybe we need to celebrate the days when nothing happens!

Joe

[wolfter]

Reading all the comments here has made me feel a bit less alone at the moment.  I just feel alone and in need of someone who understands what the last 28 years have been.  I just had to get this sadness and loneliness off my chest.

Welcome to the forums.  I totally understand the feelings of lonliness.  Before joining these forums, I had been left behind after watching my entire close circle pass away.  I was suddenly by myself even though I was surrounded by many. 

These forums afforded me the ability to connect with others who share similar experiences.  Many have become so dear to me that I couldn't imagine them not in my life.

Take care and hope to hear more from you.

Greg

[Wade]

Welcome CMilan,
I am so sorry for your loss , I also lost two very old and dear
friends over the last two weeks. Totally understand where your coming from,
It's hard to grasp their presence is gone from this earth.
Glad to hear your health has been good the past few years,
sounds like you had a very rough go for a while .
Look forward to hearing more from you ,
Wade

[Theyer]

Great thread and YES to all the above.
It seems to me Newbies are partly defining there culture by stating who they are,t .by that I mean us . OK nothing new there , however if that extends to keeping us quiet coz we spoil the Party, well Fuck that.
I don't have stuff rammed into my Face have enough pain past and present so I have the aids look & sod it each time it's commented on that is my reply.

I am also angry at the way money is loaded towards support for the Newbies and those at risk ,it perpetuates this madness of folks don,t get ill anymore , in that case why are the HIV wards full ? The forums here full off medical concerns ?

The progress has been wonderful but rivers in Egypt seem to still be in full flow , and that's what we are carrying and I think the load needs redistributing .

And that was a well earned Rant .full of points that can be picked at.But no one can say it is not what I feel.
I thank you
Michael
 

[MarcoPoz]

I threw up on my shoes this morning.  After being HIV positive longer than I was HIV negative, I can factually say that I have better shoes now than I did before

[flashdance]

This has been one of the best threads to read and thank you for all of the points to ponder.

Should we not start demanding that once a person has been HIV+ (with AIDS or not) through 10 years....that we need to be given "HIV Medicare for the rest of our lives" ??

[mayday3]

Hello LTS!

I know I don't belong in this thread, but let me just say this: if the way newbies are making you guys feel, then they are complete idiots.

We have so much to learn from you!

Keep posting and we (at least I) will keep reading!

God bless you all!

[Jeff G]

Mayday … We appreciate your support but I think you already know you are not allowed to post in this forum. We do not allow name calling on the forum so please be aware that calling other members idiots is not acceptable .

[Tonny2]

Hello LTS!

I know I don't belong in this thread, but let me just say this: if the way newbies are making you guys feel, then they are complete idiots.

We have so much to learn from you!

Keep posting and we (at least I) will keep reading!

God bless you all!

       ojo       Hello mayday3...I do appreciate your words of wanting to learn from us LTS, but you should be more responsible when you offend other members, there are a lot of guests who are reading us, and name caling just make them think twice to join us, it happened to me before I decided to register, I would read some people being nasty to other members, I thought , "no way Jose, I want to join this site, I'm looking for support and I would get just the oposite", but I read the "Vivir con vih" forum, no namecalling, more respect to others and grateful for the support, so I decided to register and share my experiences with them...then, I kept reading these other forums, and I got to know the members who were nasty to others, but, everytima I see them posting or replying, I just skip them...so, it would be nice of you to apologize, and, as you really do not know, what we LTS have gone through during the beginnig of this epedemic, I hope you become a LTS in the next 20 years and look back to this comment, and I can assure you, you will be saying the same we LTS are saying to you now...best of luck 2u...hugs from a LTS idiot         ojo

[mayday3]

Please accept my apologies, I meant no harm 

And I would please ask moderators to delete that comment I made.

Thank you and my apologies once again!

[Tonny2]

Please accept my apologies, I meant no harm 

And I would please ask moderators to delete that comment I made.

Thank you and my apologies once again!

     OJO     you are a good person, defetnitly, you can consider me your friend...apology accepted on my part...your apology will show our guest that it is worth it to join without being affraid of being judged...thanks for posting your apologies...one bear hug on your way         ojo

[Echoe89]

Hi everyone, I'm newbie.

I must say that reading your journey, experiences and battling with hiv makes my spirit uplifted. I myself hiv+ since Dec 2014 and been on medication since Feb 2015.

Thank you so much for sharing. 💐😃

Have a wonderful weekend..

[Jeff G]

Hi everyone, I'm newbie.

I must say that reading your journey, experiences and battling with hiv makes my spirit uplifted. I myself hiv+ since Dec 2014 and been on medication since Feb 2015.

Thank you so much for sharing. 💐😃

Have a wonderful weekend..

Hi Echoe. I know you mean well but this specific forum is for people that are LTS and were diagnosed before 1996 . 

[jm1953]

Many of them don't even know that we exist.  Our story cannot be told in the 140 character limit of Twitter.  We are living history of lives with HIV, our story can never really be told, as it had to be lived.  It's one of those time that you really had to be there to understand in its entirety.  We are rarely "media darlings" and with attention spans, that are now measured in minutes, if not seconds, our story has been surpassed by many of the treatments that saved our lives and that we lived through to still be here.

In a way, I envy the newbies.  I would rather be young and infected, with faint memories (if any) of a time long ago, when there was simply no hope.  We have lived a very special life, one impacted by more things, than I expect any of us ever imagined, yet somehow, we not only survived, we thrived.

While I want to see more research into PTSD and survivor's syndrome, it does not bother me that the newbies care little of my history.  My life belongs to me and it has served me well.  We all survived through horrible odds.  Sometimes, just remembering how challenging my life has been, gives me great pleasure.  Sure parts hurt, but I still came through it, to survive with folks like you and I just can't see a downside.

Joe

I strongly agree with you that there has been a lack of studies for LTS syndrome, PTSD, and stigma.  I haven't seen much except a couple of great articles in POZ magazine and the Huffington Post.  What we are a shrinking population, and as such, I don't think we count much anymore.  Sure my CD 4 and Viral load are excellent, but at the same time my body is falling apart from having this disease so long.  And whether people infected are newbies, or people who have been infected say around 10-15 years, many treat you as a mirror they don't want to look into as it might be them. They don't want to look at the reality of AIDS.  As such my social structure has shrank considerably, just like what happened with my friends Robert and George in 1987.  They were my best friends and suffered greatly from the virus but mostly the AZT.  The point is Robert had really bad KS all over among a host of other things, and George had C

[mitch777]

"I haven't seen much except a couple of great articles in POZ magazine and the Huffington Post.  What we are a shrinking population, and as such, I don't think we count much anymore.  Sure my CD 4 and Viral load are excellent, but at the same time my body is falling apart from having this disease so long."

This is exactly why I was wrongly turned down for disability after living with HIV for 33 years. Counts are excellent but it goes WAY beyond that.

The Federal guidelines treat us all the same based on what? Yes, we are a shrinking population and from my experience we don't count anymore even in the disability process.

My life will be forever altered.

Great post.

[mitch777]

That ^ was all about "me". Carry on. 
 

[Tonny2]

      ojo     Hello my friend...at least we are still here, enjoying loveones...hugs       ojo

[guitargal]

what happened to the Quilt? part of it came here about 15 years ago, about 6 or 8 big panels.. I thought that it was a good way to show respect to the people from the beginning of the epidemic and show people that those lives mattered to so many.. it was so very powerful when seen huge and complete in DC..

i told 2 family members recently..tired of the lie..they didn't say anything. Nada..zilch..one, the man, looked at me a second,  nodded and kept eating, the other woman looked at me and changed the subject. denial.? or did she already know?  she changed her attitude towards me and not in a good way so i do not think she knew before.... sad for them..as they have no true compassion.   we know we are good and kind and smart and loving and wise and educated in all kinds of health stuff. we have a zest for living, we stop and see the dew on the leaf in a more beautiful way than anyone..
after many times of illness and  crappy meds and and funerals, and  bouncing back and surviving, we know how precious everything is..