<%@ Language=Inherit from Web %> The HIVe @ "Seminary Square"

"Coming OUT of Hiding:

A Retrospective Journey through AIDS..."

Michael Wallace Connett

"The South Bank HIVe

Welcome!

at Seminary Square"

Michael W. Connett

1043 Russell Street - Suite 1

859-291-2214

Wednesday, October 13, 2004

According to UNAIDS estimates there were 37 million adults and 2.5 million children living with HIV at the end of 2003, and during the year 5 million new people became infected with the virus. Around half of all people who become infected with HIV do so before they are 25 and are killed by AIDS before they are 35. 

95% of the total number of people with HIV live in the developing world. But HIV still remains a threat to people of all ages and nationalities.

The Names Project AIDS Memorial Quilt

photo from www.greatercincinnatiglbtnews.com

Four large panels from the AIDS Quilt were displayed from January 12th to 16th at Simon Kenton High School in Independence, KY. The memorial display was organized by students from the school. At the opening ceremony, senior John Mains said, "We hope to bring awareness to our peers about the real danger of HIV infection which leads to AIDS deaths. A lot of youth look at AIDS as a disease that attacks only gays."

"I Never Expected to Live this Long..."

As you know; this year World AIDS Day is the Sunday following Thanksgiving on December 1st, 2002 and we are now into the third decade of this global catastrophe.  I recently taped an interview for a  World AIDS Day program being produced to air on local cable outlets.  Sitting here in the living room/office space of My South Bank HIVe, I looked into the camera after being asked my thoughts and replied: "I Never expected to Live This Long".  I've been thinking about that ever since.  I have been a Witness since the beginning and a survivor for the last eleven years.  After I was tested and diagnosed in 1991,  I began writing about my experiences and compiling them under the title: "Coming OUT of Hiding: A Retrospective Journey through AIDS..." .  The purpose and goal of this endeavor: The importance of telling such stories was recently addressed by a keynote address given by Mary Fisher during National AIDS Awareness Month (http://www.hivcouncil.org/mary_fisher.htm).   

To continue; I've been thinking a lot about that statement in my interview, looking back over my last eleven years and having a hard time coping with My Life with HIV.  Today, I finally seem to have emerged from this current Blue Spell and wanted to share these additional thoughts as well as begin compiling them on my web site.

Although we now know that the Virus doesn't discriminate against who it infects anymore, I think that the overriding point that SOCIETY still does is what the theme of Stigma and Discrimination was developed to address.  It is that Stigma and Discrimination that continues to present obstacles to an infected persons "Quality of Life" and I fear that the current medical advances and increased longevity have come to sugar coat the reality of Life, and Living, with HIV/AIDS:

"U.S. Supreme Court decision: "Subsequent decisions have held that AIDS is protected as a handicap under law not only because of the physical limitations it imposes, but because the prejudice surrounding AIDS exacts a social death which precedes the actual physical one.

This is the essence of discrimination - formulating opinions about others not based on their individual merits but rather on their membership in a group with assumed characteristics." from the movie "Philadelphia"

My friend Tex wrote: Hi! Michael, I know it's really none of my business, but what kind of problems are you having coping. Anything I can do to help?" 

That is what this part of the story is about.  You know how fond I am of Quotations; as Marlene Dietrich is now quoted as saying: "I love quotations because it is a joy to find thoughts one might have, beautifully expressed with much authority by someone recognized wiser than oneself"This one describes my recent fog:

"A time comes in your life when you finally get
it....when, in the midst of all your fears and
insanity, you stop dead in your tracks and somewhere
the voice inside your head cries out ENOUGH!  Enough
fighting and crying or struggling to hold on. And,
like a child quieting down after a blind tantrum, your
sobs begin to subside, you shudder once or twice, you
blink back your tears and begin to look at the world
through new eyes. This is your awakening..."

from AWAKENING - author unknown

I cried out ENOUGH! after I obsessed over my last eleven years and took an emotional roller coaster ride.  I missed meds by putting off ordering refills while I wrestled over whether or not I could, would or should.  However; they arrived today and I've had a re-awakening.  I will be sharing my story In honor of and on World AIDS Day. 

Somedays, Life in The HIVe's a Bitch!!!

For now though, just about everything I've written is contained in my web site or one of the many files that litter The HIVe and continues to be a "work in progress". My dream has always been that when I cease writing and have left this earth, it would be published and passed along to others making the same Journey.  That's the goal that helps me get out of bed each morning.  However, as I was looking back over it all and considering where I am now, I felt that it had all been in vain.  Even though I seemed to be beating the deadline, I had failed to live up to my mission statement.

A friend  from the UK said:

Years ago I thought that World Aids Day was a pretty good idea. Something to make Joe Public think about aids a little bit more than normal. Since WAD was instituted I've seen it go from a consciousness raising event to an occasion where everyone says "yes, well, it's all terribly sad, but..."

A couple of years ago I was reading about people doing special stuff on their websites for WAD and I decided I'd had enough. As far as I'm concerned, every day is World Aids Day. I created the gallery at http://www.craftman.co.uk/aids/ , which is available 365 days a year. I've suckered a few people who, when they've viewed the main index page of the site, expect the link "aids" to take them to a list of "helper" programs that I might use :)   "Don't wait till World Aids Day to do something about aids: do it now."
Steve

He's right, of course, and that's what I've been trying to do, everyday with every breath I take.  But as I said, "Somedays, Life in the HIVe's a Bitch!".  That's why I still have to believe that World AIDS Day is important.

Perhaps for no other reason than it does make Joe Public think about AIDS a little bit more than normal.  And it comes at a perfect time of the year and this year on a perfect Day on a perfect weekend...

From what I've seen and heard so far, locally we seem to have let the opportunity turn into an occasion where everyone says "yes, well, it's all terribly sad, but..."  rather than a well publicized and planned consciousness raising eventThe planned cablecast that I participated in taping is the only thing I'm aware of here.

"He who conceals his disease cannot expect to be cured."
an Ethiopian Proverb

As Mary Fisher talked about recently, it is the telling of our stories that is key to making sure that every day is World Aids Day.  To honor World AIDS Day,  I wanted to use the  strength and creative energy from my recent re-awakening to continue the telling of my story. 

Although you may not have read anything I've written yet, you have lived through the same times and seen many of the same headlines, stories and events that I have.  In her recent remarks, Mary Fisher said: "When first I was diagnosed with HIV in 1991, and when first many of you joined the fight, the AIDS community had its own story. It was a story of mysterious reports and sudden wasting, of an unnoticed community of hemophiliacs whose lives were suddenly being cut short and a previously hidden gay community whose fabric and texture was suddenly, brutally, being exposed by AIDS. Headlines told stories of families making three discoveries simultaneously: their brothers were gay, their brothers were sick, their brothers were dying."  This spoke strongly to me as I was also diagnosed in 1991 and am a gay man.  However, I came out to my family with the first discovery in 1978.  The response wasn't pretty and I was told I'd have to leave my childhood home. 

In her magazine, Oprah says in part: "Think back for a moment on your history -  not just where you were born but the circumstances that contributed to your being here.  Consider what you believed about yourself based on what others told you directly and indirectly, since 93 percent of communication is through nuance and action, not words.  How were you treated?  That is what defined how you experienced the world - both the moments when you felt valued and wanted and the moments when you felt wounded and sure you'd never be fulfilled.  Though you've probably had times when you didn't want to press on, you have survived your path.  You are still here, still standing - and what an amazing journey your life has been... 

What I know for sure is that your life is a multipart series of all your experiences - and each experience is created by your thoughts, intentions, and actions, to teach you what you most need to know.  Your life is a journey of learning to love yourself first and then extending that love to others in every encounter.  How can you travel on that road without fear?  Whenever I'm faced with a difficult decision, I ask myself: What would I do if I weren't afraid of making a mistake, feeling rejected, looking foolish, or being alone?  Remove the fear, and the answer comes into focus.

If you're holding anyone else accountable for your happiness, you're wasting time.  You must be fearless enough to give yourself the love you didn't receive.  Begin noticing how every day brings a new opportunity for your growth.  How buried disagreements with your mother show up in arguments with your spouse.  How unconscious feelings of unworthiness appear in everything you do and don't do.  All these experiences are your life's way of making itself whole - sometimes whispering, often screaming.  Pay attention.  Every choice gives you a chance to pave your own road.  Keep moving.  Full speed ahead." 

And the headlines, stories and events that are part of my experience:

  • Bare-backing, piglet parties and the return to unsafe sex.
  • Increased infections, especially among the young.
  • U.S. Warned Against AIDS Complacency 
  • About 1 million Americans are infected with HIV, which causes AIDS.
  • The lack of additional progress against the virus likely stems from several factors, including the large number of infected people who either do not know they have the virus or are not getting treatment.
  • "Today's epidemic is very different from the one we faced a decade ago. The populations at risk, the attitudes about infection and the science of HIV have all changed."
  • Strategies known to prevent its spread still are grossly underused.
  • Scientific discoveries in HIV and AIDS also seem to be merely incremental, experts said. New drugs that do the same thing — but slightly better — are emerging, but there's no vaccine or blockbuster treatment around the corner.
  • Making more progress against HIV will require getting more people tested and treated early in their infection, and developing drugs that work better and are simpler to take.
  • There have been slow but steady increases among heterosexuals, with diagnoses increasing 10 percent between 1998 and 2000.
  • For those without the disease, the growing pool of HIV infections means a greater chance of becoming infected and an even greater need to protect themselves.
  • "Americans ... don't have the same sense of urgency or crisis which
    characterized the early years of the epidemic.  Some are
    becoming bored with HIV after 20 years, some are simply tired of the messages and behavior change. And many didn't realize they were signing on for a lifetime of condom use."
  • However, the ultimate goal is to prevent infections from occurring in the first place.
  • Many people speak of complacency now that HIV is treatable, and some even are skeptical that further progress can be made in the United States.
  • HIV/AIDS is a disease at once amazingly virulent and shockingly new. Only a generation ago, it lay undetected. Yet in the past two decades, by the reckoning of the Joint UN Programme on HIV/AIDS (UNAIDS), about 65 million people have contracted the illness, and perhaps 25 million of them have already died. The affliction is almost invariably lethal: scientists do not consider a cure to be even on the horizon. For now, it looks as if AIDS could end up as the coming century's top infectious killer.
  • We can't sit back and wait for a vaccine. Instead, we must renew HIV
    prevention in the United States.
  • "We must revive the passion with which the U.S. once faced the HIV epidemic, with a strong and pre-eminent focus on preventing the spread of the virus."

I'm doing the best I can, but it's not easy.  That's my story and I'm sticking to it.  I recently sent a note to Oprah suggesting that she do a story on: "Life, and Living, with HIV/AIDS in America" as a result of this article.  As a witness from the beginning and a survivor for the last eleven years, I expressed my deep concern that the current medical advancements and increased longevity had only served to sugar-coat the reality doing a disservice to the public and actually impeding prevention efforts.  This was brought home to me in the headlines, stories and events that are part of my experience.

I am very well aware that mine is a rather dark story that people do not want to hear, but I tell it to counter the sugar coating for the sake of prevention.  I'm hoping that a heaping dose of my honest reality about  "Life, and Living, with HIV/AIDS in America" - "that most of the time, it sucks... Big Time!"  might succeed where the other side of the story hasn't.

Thanks for allowing me to share my Journey with y'all.
Best Regards,
Michael  11/22/2002

August 2006 - Oh Canada!!!

"... either get busy dying or get busy living, which would you choose?"

 
I have come to believe that it's not that simple.  In my experience, I've tried to do BOTH in balance.  I have busied myself with living in the hopes that I could "use the rest of my life the best I can so that the people and places through which my journey led me would remain a little bit better for me having passed their way".  At the same time, I have also busied myself with preparing for the Journeys end so that I would not have any fear about reaching it, leave anything undone or anyone else responsible. The paperwork has been done, the funeral paid for and my bags are packed: I'm ready to go...  I would hope that my wishes would be respected and no one would insist on waking me up just to say goodbye.  Especially if they hadn't bothered to just say hello before then.
 
I would venture a guess that good thoughts, vibes and prayers, etc are indeed greatly appreciated.  However, I also have to consider what The Pope said in an article I posted previously. 
 
For future reference, Thanks for the Love, Support and Friendship.  But when my time comes, and I believe I am well prepared for it, please just love me enough to let me go and "sleep in Heavenly Peace".  I wish you all Love and Happiness in the New Year
 
Michael

”Together, these two tests are
like a train racing towards a
big hole in the tracks.  CD4+
cell counts tell you how far the
train is from the hole and viral
load can tell you how fast you
are moving towards it.”

T-Cell Tests

What Are T-Cells?

T-cells are a type of lymphocyte (white blood cell). They are an important part of the immune system. There are two main types of T-cells. T-4 cells, also called CD4+, are “helper” cells. They lead the attack against infections. T-8 cells, (CD8+), are “suppressor” cells that end the immune response. CD8+ cells can also be “killer” cells that kill cancer cells and cells infected with a virus. 

Researchers can tell the T-cells apart by specific proteins on the surface of the cells. These proteins are also called “receptor sites” because they can lock onto certain molecules. So a T-4 cell is a T-cell with a CD4 receptor on its surface. This type of T-cell is also called “CD4 positive”, or CD4+.  

Why Are T-Cells Important in HIV?

When HIV infects humans, the cells it infects most often are CD4+ cells. The virus becomes part of the cells, and when they multiply to fight an infection, they also make more copies of HIV. 

When someone is infected with HIV for a long time, the number of CD4+ cells they have (their T-cell count) goes down. This is a sign that the immune system is being weakened. The lower the T-cell count, the more likely the person will get sick. 

There are millions of different families of T-cells. Each family is designed to fight a specific type of infection. When HIV reduces the number of T-cells, some of these families can be totally wiped out. When this happens, you lose the ability to fight off the particular infections those families were designed for. When this happens, you might develop opportunistic infections. 

How Are the Test Results Reported?

T-cell tests are normally reported as the number of cells in a milliliter of blood. There is some disagreement about the normal range for T-cell counts, but CD4+ counts are between 500 and 1600, and CD8+ counts are between 375 and 1100. CD4+ counts drop dramatically in people with HIV, in some cases down to zero. 

The ratio of CD4+ cells to CD8+ cells is often reported. This is calculated by dividing the CD4+ value by the CD8+ value. In healthy people, this ratio is between 0.9 and 1.9, meaning that there are about 1 to 2 CD4+ cells for every CD8+ cell. In people with HIV infection, this ratio drops dramatically, meaning that there are many times more CD8+ cells than CD4+ cells. The T-cell value bounces around a lot. Time of day, fatigue, and stress can affect the test results. It’s best to have blood drawn at the same time of day for each T-cell test, and to use the same laboratory. Infections can have a large impact on T-cell counts. When your body fights an infection, the number of white blood cells (lymphocytes) goes up. CD4+ and CD8+ counts go up, too. 

 

Because the T-cell counts are so variable, some doctors prefer to look at the T-cell percentages. These percentages refer to total lymphocytes. So if your test reports CD4+% = 34%, that means that 34% of your lymphocytes were CD4+ cells. This percentage is more stable than the number of T cells. The normal range is between 20% and 40%. 

What Do the Numbers Mean?

The meaning of CD8+ cell counts is not clear, but it is being studied. 

Most researchers believe that the CD4+ cell count is a good measure of the health of the immune system. The lower the count, the greater damage HIV has done. But some people with almost no CD4+ cells have stayed healthy for a long time. 

CD4+ counts were used to estimate how long someone would stay healthy. However, the viral load test is better for this purpose. CD4+ counts are now used to indicate when to start certain types of drug therapy:

 

When to start antiviral therapy
When the CD4+ count goes below 500, most doctors begin antiviral drugs such as AZT, ddI, or 3TC. Also, some doctors use the CD4+% going below 15% as a sign to start aggressive antiviral therapy, even if the CD4+ count is high. 

However, the viral load test has become at least as important as the CD4+ count in deciding when to start antiviral drugs.

 

When to start drugs to prevent opportunistic infections
Most doctors prescribe drugs to prevent opportunistic infections at the following CD4+ levels: 


  Less than 200: pneumocystis carinii pneumonia (PCP) 

Less than 100: toxoplasmosis and cryptococcosis

Less than 75: mycobacterium avium complex (MAC)

New Mexico AIDS InfoNet Fact Sheet


“What is Viral Load?

“What is Viral Load?

Viral load means the amount of HIV in the blood of an HIV+ person.  While CD4+ T-Cell counts often help doctors determine how healthy your immune system is, viral load can help you figure out how fast the immune system is being damaged.  If your viral load is high, your immune system may be getting weaker.  When your immune system gets weaker, other infections and diseases can move into the body.  Also, if a woman with HIV has a high viral load while she is pregnant, her baby has a higher chance of being infected with the virus.

How can you test for your viral load?


By taking a blood test, doctors can measure the amount of virus in your blood.  The result of this test can be used with your CD4+ cell count to determine how healthy your immune system is.
There are two major kinds of viral load tests.  One test is called PCR and the other one is called bDNA.  These tests are different and they measure HIV differently.  It is important that you and your doctor choose one kind and use this same kind each time you take this test.

 

Does it help to know what your viral load is?


You can use the viral load test to help keep track of how well you are and also help you decide when to start taking anti-HIV drugs or switch to different new drugs.  Some doctors and scientists say that if you have more than 10,000 “copies” of the virus in your blood sample, anti-HIV drugs should be started.  This can help stop HIV from destroying your immune system and even reverse some of the damage already caused by the virus.
The viral load test can also show how well the anti-HIV medicines are working for you.  Before you start taking the medication, you should take the viral load test two times to be sure of the results.  After taking the medicines for several weeks or a month, you should take the test again to find out if the anti-HIV drugs are helping to reduce the amount of HIV in your blood.

 

Undetectable: what does this mean?


Maybe you have been taking anti-HIV drugs and your doctor has told you that your viral load is “undetectable”.  This means that the viral load tests could not see any virus in your blood.  This is good news, as it means the drugs are working well against the virus.  However, the virus is probably still there.  These tests cannot see small amounts of the virus in the blood.  HIV can also hide in other parts of the body and cannot be seen using these tests.

 

What’s the bottom line?


Taking the viral load test is a very important step for people who have HIV.  Remember, you need this information to have discussions about your health.  Take time out to think about it and to make your life better!” 

NOTE: In regard to the standard Viral Load test, <50 is the lowest benchmark reported and is considered as a “less than Detectable” Level.

Understanding Viral Load
By Octavio Vallejo, MD, MPH


AIDS symptoms create double threat 
Randy Dotinga, Gay.com / PlanetOut.com Network 
Tuesday, December 24, 2002 / 06:16 PM

SUMMARY: New research suggests that AIDS presents a double threat when it attacks the brains of patients: Besides wiping out the ability to think clearly, the virus can also prevent them from remembering to take the drugs that could keep the disease from getting worse.

New research suggests that AIDS presents a double threat when it attacks the brains of patients: Besides wiping out the ability to think clearly, the virus can also prevent them from remembering to take the drugs that could keep the disease from getting worse.

"Whenever possible, doctors need to opt for simpler medication regimens over more complex ones," said Dr. Charles Hinkin, an associate professor of psychiatry at the University of California at Los Angeles School of Medicine.

Hinkin and colleagues studied 137 patients in the Los Angeles area who were taking the AIDS "cocktail," also known as HAART (Highly Active Anti-Retroviral Therapy). Some patients had developed AIDS, while others were only HIV-positive.

The findings of the study appear in the Dec. 24 issue of the medical journal Neurology.

One in three of the patients had cognitive impairments, and they took their medications as directed only 70 percent of the time. By contrast, the patients without cognitive problems managed to take their drugs correctly 82 percent of the time.

Missed doses are important because doctors fear that the virus can mutate into new, more powerful forms when it's not being attacked by drugs.

Researchers found that patients with cognitive decline had an especially hard time remembering to take three doses of pills each day. They did so only 52 percent of the time, compared to 79 percent among the other patients.

Patients can usually remember to take doses in the morning and at night, but a mid-day dose can throw them a curve, Hinkin said.

The researchers did not rely on reports from the patients, but instead placed tiny electronic devices in pill bottles to track when they were opened.

Even in the age of powerful AIDS treatments, cognitive decline is still common. Patients continue to report difficulties with concentration and memory.

Cognitive problems can appear even if opportunistic infections have not started to attack the body. Scientists suspect the villain is inflammation in the brain caused by the immune system's attack on the virus.


The HIVe's 'Hood...
"When dealing with people, let us remember we are not
dealing with creatures of logic. We are dealing with
creatures of emotion, creatures bristling with prejudices
and motivated by pride and vanity."  – Dale Carnegie
~~~~~~~~~~~~~
As I look back and review the coverage given World AIDS Day 2002 by our local media (in particular the Sunday newspaper- The Enquirer) and the views they chose as representative of the community, it would seem to me that they still think that "yes, well, it's all terribly sad, but..."

"Self-control the real cure for AIDS"

    Tony Lang notes in his piece from Sunday's Forum section (Dec. 8) that a "free and open" discussion of AID must be had.  I agree wholeheartedly.  Unfortunately, when the topic is AIDS, the discussion is rarely "free and open" to the truth.  The truth is this: AIDS is not an epidemic.  Using even the most liberal estimates, those infected (and living) with AID totals approximately 60 million people.  That is barely 1 percent of the entire world's population.  By comparison, the black plague killed nearly 30 percent of Europe's population during the Middle Ages.

    The other truth about AIDS is the fact that, excepting anecdotal cases, it is transmitted and acquired almost solely as a result of an individual's behavior.  In Europe, Asia and the Americas, drug use, prostitution and homosexual behavior contributes to over 80 percent of all AIDS (HIV) infections.

    Pouring money into the coffers of Third World countries where it will be misappropriated or stolen outright will not solve the problem.  A big dose of self-control and common sense will, though.                -Mount Airy

"AIDS, Holocaust are not synonymous"

     Jim Borgman's cartoon in the Dec. 8 Forum section equating the African AIDS epidemic with the Holocaust of World War II is an insult to the families of the millions who perished 60 years ago.  Has he forgotten that the vast majority of AIDS patients contracted the disease through voluntary actions of their part?  This is totally different from the Holocaust, where the deaths were caused by a deliberate plot by a deranged government and none of the victims, at least after 1939, had any choice.

    Not even Osama Bin Laden has chosen to blame the West for the AIDS epidemic, whereas the West, by its inaction of Munich and elsewhere, bears considerable blame for the Holocaust.

    Of course, we should help where possible, but helping will be a lot easier and more effective if everybody acknowledges that the biggest obstacle to ovecome is the lack of education of the African masses, which is caused in large part by the brutal governments in place on much of the subcontinent.                -Amberley Village

"Abstinence education is the only way to go"

    What's the best age to contract a fatal disease?  13?  18?  23?  How about never?  [Facing the AIDS challenge" Dec.8].

    Bono is dead right that abstinence is the best weapon against AIDS; delaying sexual activity is crucial - stay clean, wed clean, live long and prosper.

    Yet the Enquirer quotes local experts who totally missed Bono's point.  Rather than only discuss abstinence in schools, they want to have our permission for risk-taking, a.k.a. condoms.

    Never mind that even adults have a high failure rate with condoms.  Never mind that product defects keep the condom makers from claiming what the experts assert.  Never mind that teen condom carrying is not associated with condom use.

    Let's focus on abstinence-only education: There's no such thing.  It's always abstinence-plus - plus goal-setting, decision-making, risk/benefit analysis, assertiveness training, character awareness, social skills.  Also, promoting mental, emotional and physical health.

    As Bono knows, abstinence has innumerable pluses.  What abstinence education leaves out is the minus of floating a kid's future on the leaky vessel of a condom.            -Fort Thomas

Having recently smacked through a patch of turbulence, I thought I'd include a report on my "...balls in the air". 

After my emergence, re-awakening and triage; I will guardedly say none have shattered.  However; they are indeed, irrevocably scuffed, marked, nicked, damaged. They will never be the same".

I will be sharing my story In honor of and on World AIDS Day. Till then; know that I'm well, Take Care and have a wonderful Thanksgiving.  I'll keep y'all posted...

----- Original Message -----

Sent: Wednesday, November 20, 2002 6:11 AM

Subject: [hiv-aids-support] Thoughts to ponder....

Dear friends

Imagine life as a game in which you are juggling some five balls in the air.
You name them work, family, health, friends, and spirit--and you are keeping
all of these in the air. You will soon understand that work is a  rubber
ball. If you drop it, it will bounce back.  But the other four balls -
family , health, friends and spirit - are made of glass. If you drop one of
these, they will be irrevocably scuffed, marked, nicked, damaged or even
shattered. They will never be the same.  You must understand and strive for
balance in your life. How?

1. Don't undermine your worth by comparing yourself with others. It is
because we are different that each of us is special.

2. Don't set your goals by what other people deem important. Only you know
what is best for you.

3. Don't take for granted the things closest to your heart. Cling to them as
you would life, for without them, life is meaningless.

4. Don't let your life slip through your fingers by living in the past or
for the future. By living your life one day at a time, you  live "ALL" the
days of your life.

5. Don't give up when you still have something to give. Nothing is really
over until the moment you stop trying.

6. Don't be afraid to admit that you are less than perfect. It is this
fragile thread that binds us to each other.

7. Don't be afraid to encounter risks. It is by taking chances that we learn
to be brave.

8. Don't shut love out of your life by saying it is impossible to find. The
quickest way to lose love is to hold it too tightly and the best way to keep
love is to give it wings.

9. Don't run through life so fast that you forget not only where you've
been, but, where you are going.

10. Don't forget a person's greatest emotional need is to feel appreciated.

11. Don't be afraid to learn. Knowledge is weightless, a treasure you can
always carry easily.

12. Don't use time or words carelessly,  neither can be retrieved. Life is
not a race, but, a journey to be savored each step of the way.  Yesterday is
history. Tomorrow is a mystery and Today is a  gift.  That's why we call it
"The Present."

Peace be with you,

Miguel-Angel
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
© Copyright 2002
Miguel-Angel Carmen de Santiago-León
(all rights and privileges reserved)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Once you find out you are positive you have one of two choices, either get busy dying or get busy living, which would you chose?

Best Regards!

Michael


   Date: Fri, 22 Nov 2002 14:37:29 -0600
   From: "H C Covington" 
Subject: From the Consultant's Journal - we are not dealing with creatures of logic - "Us" or "Them" - November 22, 2002

From the Consultant's Journal .............

~~~~~~~~~~~~~
"When dealing with people, let us remember we are not
dealing with creatures of logic. We are dealing with
creatures of emotion, creatures bristling with prejudices
and motivated by pride and vanity."  – Dale Carnegie
~~~~~~~~~~~~~

The above describes both "us" and "them" wherever we are.

There is nothing logical about homelessness although we
must develop a rational and logical path of Life Recovery
solutions to help those who find themselves in this
condition.

Those called homeless sometimes have a mind set of hurt
or battered "vision goggles" that limit their ability to see
the path for a season and we must make it plain and - at
times - have someone to walk it with them.

Remember, about 25% of those called homeless feel that
"home" is a 'four letter word' and that home was not a safe,
sanitary and secure place. It was a place of what is now
called "domestic violence" a place of "personal terrorism."

There are those called to plan, to fund, to organize, to
build housing, to drive vans, to be health care workers,
to be care (case) managers, to be mentors, to be encouragers,
to be teachers, and there are those that are called just to
"BE" there to listen and care and not be as concerned with
the "Doing."  As you are concerned about others, find your
place and do all you can with all of your heart to help.

We wish you a full and complete Thanksgiving for where
you are in your journey of life this year.  Be blessed as you
are a blessing to those that know you.

Sonny
H. C. [Sonny] Covington, Editor
Nonprofit Information Specialist
Housing and Homeless Recovery
Voice support 1-800-678-5774
icanamerica@egroups.com
~~~~~~~~~~~~~~~~~~~~~
"Remember - to be truly helpful to those called homeless, we must make HOPE possible, rather than despair convincing"


The depression era taught us that there is something worse than being forced to work.

It is being forced not to work.
---Unknown

Greetings, & Welcome to the group!

As you suspected; this is, indeed, a familiar predicament but I also suspect that it is of greater concern to those of us considered long-term thrivers/non-progressors.  This Month marks my 11th year thriving with HIV and this is an issue that I've given much consideration in this year since celebrating my 10th Anniversary.

Earlier this year, I wrote: 

  • I was in my 20's and just coming out when AIDS first hit this Country.  Tested positive in October of 1991, confided in a manager at work and was out of a job within a week.  I've been on Disability since late 1993 and MediCare/MedicAid since 1995.  Bulk of my work experience is in Food Services/Catering and Event Planning.
  • Many of the friends I made and hung with have passed.
  • Ky. ADAP has paid for all my AIDS drugs since day 1.
  • My monthly SSDI Benefit is $696.00 and I get $10.00 in Food Stamps.
  • I can't help but wonder if the job market has become as HIV-friendly as it's being made out to be?  Or if the easier and more discreet medication schedules  allow for selective disclosures?
  • What are the current health insurance options for the newly infected??
  • Are you aware that if you do qualify for SSDI there is then a two year waiting period before you are eligible for MediCare Benefits??
I came to the conclusion that there isn't any job out there that could provide me with "SGA" or a wage that would adequately compensate for the loss of my current benefits and cover my living expenses.  As I understand SSDI, you will eventually lose it and Medicare if you go back to work "full-time".  You can go through a 6 month "trial work period" and keep your Medicare that long.  However, you can work part-time (provided you earn no more than $750.00 a month) with no damage to your SSDI and Medicare benefits.  Your means-based benefits (HUD, Food Stamps, ADAPS, Medicaid, etc.) will be adjusted though.
 
I have decided that it is my "Life" that is now my work and my vocation is to "Use it well...".

While HIV is not transmitted in the majority of workplace settings, the supposed risk of transmission has been used by numerous employers to terminate or refuse employment. There is also evidence that if people living with HIV/AIDS are open about their infection status at work, they may well experience stigmatisation and discrimination by others.

"Nobody will come near me, eat with me in the canteen, nobody will want to work with me, I am an outcast here".

(HIV positive man, aged 27,)

Pre-employment screening takes place in many industries, particularly in countries where the means for testing are available and affordable.

In poorer countries screening has also been reported as taking place, especially in industries where health benefits are available to employees. Employer-sponsored insurance schemes providing medical care and pensions for their workers have come under increasing pressure in countries that have been seriously affected by HIV and AIDS. Some employers have used this pressure to deny employment to people with HIV or AIDS.

"Though we do not have a policy so far, I can say that if at the time of recruitment there is a person with HIV, I will not take him. I' ll certainly not buy a problem for the company. I see recruitment as a buying-selling relationship. If I don't find the product attractive, I'll not buy it."

(The Head of Human Resource Development)


 
----- Original Message -----
Sent: Wednesday, October 09, 2002 9:59 PM
Subject: [Living with HIV] Seeking Advice
 
As a new member of the group, I'd like to start by saying hello and
thanking responding members in advance for their time and advice.

Here's my problem (and I suspect it's a sadly familiar one):

I've been HIV positive and on disability for several years. In the
past few years I have seen my health improve enough to consider a
return to work. I currently have Medicare parts A and B, with
Tennessee's answer to Medicade ('Tenncare') providing prescription
drug coverage.

I have an excellent job offer in Atlanta Georgia that offers a good
salary, a way back into the workforce, and maybe most importantly a
way out of the isolation that comes with being disabled.
 
Unfortunately this new job doesn't offer group medical insurance and
my attempts to find an individual medical policy, some state funded
medical assistance, or some other means through which I can afford my
HIV meds in the state of Georgia have all failed miserably. My
projected income in this new job puts be over the earning limit for
means-based programs like ADAP or Medicare (or so I've been told),
but my income is not so wildly extravagant that I can afford to pay
everything out of pocket.  I understand that as a working disabled
person, I will be able to keep my Medicare A/B coverage but will
loose the vital perscription drug coverage provided by Medicade/
Tenncare. Further, no private insurer in the state of Georgia will
allow me to participate and my inquiries to the various HIV/AIDS
service organizations in Atlanta into how to find insurance or some
alternative healthcare/perscription drug mechanism have gone nowhere.
Surely I'm not the only HIV positive person transitioning back into
the workforce to hit this most serious of snags.

I'd appreciate any advice and direction anyone in the group can offer
me. Thanks!


Optimism may work against HIV patients

Thu Oct 10, 8:30 PM ET

Randy Dotinga, Gay.com / PlanetOut.com Network

SUMMARY: A new study suggests optimism often breeds bad decisions for people who are infected with HIV (news - web sites).

It might seem logical that pessimistic HIV-positive people would take more health risks than their counterparts, but a new study suggests that the exact opposite is true: optimism often breeds bad decisions.

In a survey of 220 people infected with HIV, researchers at the University of Pennsylvania found that those with the most hopeful views of the future were most likely to skip doses of AIDS (news - web sites) drugs and have unsafe sex.

"Optimism appears to be a factor in how adherent one is to medications and safe sex practices," study co-author Dr. William C. Holmes told the Gay.com/PlanetOut.com Network. "The results do seem to be intuitive. In general, people do tend to be less preoccupied by things in their life that don't worry them."

Holmes, an assistant professor of medicine and epidemiology at the University of Pennsylvania, and colleague Dr. Joseph L. Pace reported their findings in the September issue of the Journal of General Internal Medicine.

The two researchers judged levels of pessimism and optimism by asking HIV-positive people to describe their feelings when first diagnosed, their feelings now and how long they expect to live.

Members of minority groups, along with women and drug users, were most optimistic about their futures. White people, those with low levels of education and those with weaker immune systems, were more likely to be pessimistic.

The researchers found that 26 percent of optimists sometimes failed to take their medications, twice as many as in the pessimist group. And about 57 percent of optimists said they sometimes had unprotected sex, again about twice the rate among pessimists.

Optimists tended to have stronger immune systems than pessimists, and their good health may allow them to become distracted by other things, like their jobs, Holmes said. Also, optimists may avoid activities that remind them of the days when they weren't healthy, he said.

Other factors may be at work too. "Though I have no evidence to support this, some folks who are quite knowledgeable about their HIV disease may consider that a low viral load in the blood infers a similarly low viral load in other body fluids and might decide that some sexual acts are not as risky as when their viral load was higher," he said.

The irony is that levels of the AIDS virus may rise if patients also develop a cavalier attitude toward taking their drugs, he said.


"I’m only a man in a silly red sheet

Digging for kryptonite on this one way street

I’m only a man in a phony red sheet

Looking for special things inside of me, inside of me

Inside of me, yeah inside of me, inside of me..."

 “Superman” by Five for Fighting

Each day, and the living of it, has to be a conscious creation in which discipline and order are relieved with some play and pure foolishness.

-  May Sarton

New Hiv+ member looking for... Have been trying to find sites for Poz people to meet, but havent found them, if you know of some please send to me. Dont want to be isolated. Just found out on Monday, it has been a long week. Looking forward to making some new friends... from the POZMEN YaHoo Group

"This recent posting struck a chord in me on several measures and I wanted to get some feedback, especially from the long term residents of the HIVe...

  • Welcome to the group.  I will attest that this group is where you can definitely find what you're looking for!
  • There are several other groups that may be of interest to you as well and can be located by doing a search for HIV/AIDS on the YaHoo Groups home page.
  • I was in my 20's and just coming out when AIDS first hit this Country.  Tested positive in October of 1991, confided in a manager at work and was out of a job within a week.  I've been on Disability since late 1993 and MediCare/MedicAid since 1995.  Bulk of my work experience is in Food Services/Catering and Event Planning.
  • Many of the friends I made and hung with have passed.
  • Ky. ADAP has paid for all my AIDS drugs since day 1.
  • My monthly SSDI Benefit is $696.00 and I get $10.00 in Food Stamps.
  • I can't help but wonder if the job market has become as HIV-friendly as it's being made out to be?  Or if the easier and more discreet medication schedules  allow for selective disclosures?
  • What are the current health insurance options for the newly infected??
  • Are you aware that if you do qualify for SSDI there is then a two year waiting period before you are eligible for MediCare Benefits??
  • Have the twenty-somethings that are now testing POZ even begun paying into a future or retirement/disability plan??
  • Has it really become 'CHIC' to be POZ??
  • The Face of AIDS that we Americans see most often in this 21st year are from across the oceans, far removed from our own cities and neighborhoods.  Perhaps it is because this new group of infectees haven't seen the death, stigma and discrimination that we once did that HIV has become no big deal???
Just wondering, as Dr. Phil would say: "What were you thinking?"

Every Day is World AIDS Day...

I am also a recipient of HUD Housing Assistance in the form of a "Housing Choice Voucher" which is now replacing the old Section 8 Certificates.  I pay $88.00 on a $335.00, 1 Bdrm, non-equipped (no stove/refrigerator provided-which is also unusual) kitchen unit where all the utilities are separated out and I am responsible for (including water & sanitation which is unusual).  My gas & electric is even billed at $72.00/mo and I get a quarterly bill for water & sanitation (I've not yet received my first one).  My SSDI is $696.00 monthly.  I have been on Disability and qualified for Section 8 since '93.  This is my fourth attempt to make a "Home" in a HUD qualified apartment.  This is the reason I noticed and joined this group.  I am wondering what other peoples experience with HUD/Section 8 has been.  Mine has been a real learning experience and quite stressful at times and I've found that Low-Income Housing comes with stigma and discrimination all its own.  At least it does here in Northern Kentucky:

  • In most cities here, only HUD Assisted units are subject to any kind of inspection for Housing Quality Standards.  Therefore, there is great reluctance from many landlords to accept HUD vouchers in order to escape the inspection and keep housing authorities out of their properties.
  • Myths & misconceptions abound in regard to how the program operates, who qualifies, what the HQ Standards are, what the Fair Market rent rates are, what landlords can charge, etc...
  • In Covington where I live, the Housing Authority is more concerned about the outer facade/appearance and the elimination of "blight", than they are about the inside quality and the ethics of landlords.
  • The state has decent Landlord-Tenant laws which have been adopted by the local cities, but enforcement is non-existent unless you have the resources to pursue a bad landlord through the local courts.
HUD is another well-intentioned and workable federal program that is screwed up by the mis-guided policies and intentions of the local administrations/Housing Authorities.  I've been writing about and urging reforms for several years now.  Would be interested in hearing about others experiences.  Thanks!

"Howdy!
Thanks for mentioning how sk(r)ewed the system is against single adults - especially males!
----- Original Message -----
Sent: Thursday, August 22, 2002 4:00 PM
Subject: Re: [Pozmen] Housing-HUD/Section 8

 

Michael: Here comes part 2 of the story.
I am familiar with what you say about  what is necessary to qualify for
benefits.    In this case it is not mismanagement, it is deliberate. I
went to check several apartment complexes on their list and found empty
apartments. When I questioned this I was quietly told that these units
were for families and women with children only. They roll out the red
carpet for them. If you are a single person you might as well forget it.
I got the feeling that apts. don't even exist.
 
A landlord who agrees to accept a voucher and the provisions of the program holds most of the cards in this regard!  In exchange for that, many landlords who do take a voucher treat their tenants and properties like crap as long as they can get away with it.
 
My first section 8 apartment and experience ended after I'd invested almost four years into making my "HOME" there.  It was there that my friends Sande and Mark gave me Moses.  I made an agreement with the landlord that I would take over doing all the yardwork/landscaping around the place in exchange for him allowing me to have Moses without any rent increase.  This was a single family home that had been turned into a duplex (2-1 Bdrms) with off-street parking for 2, a yard, a back deck with a skyline view of Cincinnati...  I gardened, landscaped, cleaned all the dog droppings, decorated at Christmas, belonged to the Neighborhood Association and help start the neighborhood block-watch.  I thought I had died already and gone to heaven!  Along the way, however, I had dramatically improved the value of this rental property.  It could possibly command mush higher rent than may be allowed by Section 8!  After an accidental fire in the unit (later attributed to faulty wiring by the remodeling contractor); I put my stuff in storage at and stayed with my parents and cleaned it all up while the repairs were to be made.  The landlord then decided to try and blame me since I am a smoker, used the insurance to completely rehab the unit and then informed me that he would not be renewing my lease when the repairs were completed.  Eventually, he put it back on the market and tried to rent it for the fair market luxury rate.  I believe it sat empty for well over six months!!!"

"I used to be afraid of dying, but I'm not anymore.
I'm more afraid of what happens to the people who live..."
from "And The Band Played On"

Post Office Box 2363  *  Covington, KY 41012-2363