Tina

So an acquaintance says to me ......

"I don't understand why you didn't come over to play with us last weekend, it was 'gezellig.'"

"They really got me going those two (later three - a different three) and one of 'em fisted me with both arms up to the elbows."

"Of course we were on Tina (Crystal Meth) which was really horny, otherwise I can't take so much up my ass."

"850 euro for 10 gram. Expensive? Depends on your priorities doesn't it."

"The Hepatitis C? I've been on the treatment for 5 months and it doesn't help - I'm just gonna have to wait for the new medicine."

....

HHV8

Another acquaintance with Kaposi Sarcoma related Non Hodgkins Lymfoma - like it never went away.

Gay, HIV+, 45+ not on CART, no reason to be, until ...

When will we see that the danger is present, not past.

Drama Queen

Drama Queens are wonderful creatures, at least they should be. They make a wonderful show out of themselves and their surroundings. Unfortunately, and more often than not, the cost of the show is higher than the content would warrant if it were on broadway.

Most Drama Queens don't even know that they are the only star in their particular firmament. Correction. They demand to be the only star in their firmament.

Its a lonely existence.

All glitter and sequins, spotlights and smoke screens, self-deception and pointless intrigue.

Aids-related Cancers

The top three cancers in the general population, breast, intestine and lung, occur in the same frequency in people with a Hiv infection. However, the three so-called Aids related cancers occur much more often.

1. Kaposi Sarcoma of the skin and internal organs – Herpes 8

2. Glandular or non-Hodgkin – Epstein Barr Virus

3. Cervical (in women) – HPV

Other cancers are rising in frequency amongst people with a Hiv infection. Notably the Hodgkin Lymphoma.

The association with Hepatitis B and Hepatitis C infections increase the risk of liver cancer.

Certain non-KS skin cancers are also more prevalent in people with a Hiv infection.

Anal cancer, although comparatively rare, does occur 25 times more in Hiv positive men and 40 times more in Gay Hiv positive men. Recent trials are already indicating that these figures will increase when the trials are completed.

Happy, Happy, Happy

For the first time in 20 years I read the last will and testament of my ex-partner Herman last night.

I read it and berated myself for reading it at the same time. But it didn't hurt, it didn't even really get me as angry as I expected it to. At least not angry with Herman. His mother I will always despise because she is who she is. His father was pure dictator, there was nothing else one could do but hate him, or at least revile him.

But last night I suddenly discovered detachment. After 20 years of a life twisted and distorted by Herman's dying and death I think I may be able to confront it.

The Worrier

I have to put a disclaimer here first - what I am about to write is in no way intended to hurt anyone.

I'm not a natural worrier.

As a teenager I was definitely a bridge burner, the cry of 'next!' was always on my lips. With no real idea of where I was going, and even less of why I was going there, I careered about the globe in a state of naive bliss.

Relatively naive bliss. Stuff happened but I was young enough to shrug it off and carry on. What I wasn't prepared for was that it would all come flooding back to haunt me much later on in life.

I won't bore you (and myself) with repeating the story of my life because its just too tedious for words in my head and too fantastical for the rest of you.

My relationships have all been bad in one way or another. In one way in particular is that they have all left me with an acute feeling of worry.

I worry about almost everything. Most of the time its reasonably under control, or at least I can hide it from others. I'm actually quite good at hiding it from myself too. I have acquired techniques, tricks and mental sleight of hand that allow me to function reasonably well even though I am sometimes in a continual state of anxiety.

Ok kids, this sounds worse than it is. Many of us have developed 'coping' techniques over the years. Social etiquette is made of 'coping' techniques. Shaking hands, kissing, saying "How are you?" without meaning it are all forms of 'coping'.

It gets serious when you have to discuss things with yourself like "Do I go out of the house today?"

"Will you still feed me, will you still need me ...."

It seems that I have the bone density of a 65 year old.

At least that's what my Internist told me when he showed me the results of the tests.

It really upset me - it still does.

I'm just not ready to be 65 yet, honestly I'm not. I don't think I will be when I actually do turn 65.

Although, technically, my bones have already turned 65 without me.

Which I consider to be inconsiderate at the least.

How many other bits of me are gonna go kamikaze before their (my) time?

OLVG (3)

Here we go again as they say ....

Its not often that I write about events that are yet to take place - I'm usually a whiner after the fact. But in a few hours I'm back at the OLVG for the results of the bone density scan etc. and I'm not looking forward to it.

At the moment I'm saying to myself that it'll be alright, that I'm exaggerating, that it'll all turn out to be a storm in a teacup. But the fear that it could be something, anything, is there lurking at the back of my brain.

I'll find out when I find out.

OLVG (2)

Back to the OLVG again - this time its another friend who has been raced into hospital with an infection on top of his Hodgkins ....

.... and have just heard that another has also been admitted last night with an unspecified infection.

I'm actually lost for words a little.

OLVG

In a few minutes time I'm on my way to the OLVG.

Again.

In the last few months people I care about have undergone the following:

2 Deaths (1 Hiv related)

1 near fatal Heart Attack

1 Hodgkins

2 cases of partial paralysis (with no apparent cause/Hiv+'ers)

1 Infected anal abcess with complications

and to be honest I can't be bothered recollecting the others.

So, and with all respect to those who are experiencing the same, don't tell me what I can and can't do regarding disease, death and dying.

Is it too late?

Is it too late to 'Humbug' Christmas?

Is it too early to do the soul searching thing that we always seem to do at New Year?

Stuck between the two great holdays of the year in the limbo that is the 'Festive Season'.

'Boxing Day' always filled me with dread, that of excrutiating boredom. A day removed of all the excitement of Christmas Eve, the expectation, the excitement, the tension. Only to be replaced with a day of sport, left-overs and badly chosen presents.

I remember the Christmas my Father gave me an electric organ. There's a polaroid photo of me somewhere just after I've finished unpacking it. There's no disguising the disappointment on that face....

What on earth was he thinking of? Which particular straw had he desperately grasped at that year? Or was it (once again) an offer he couldn't refuse?

In a couple of days time, not sure which exactly, he will have been dead approximately 12 years. It pains me to say that I can't be more accurate. My god, even in death he's as unfathomable as he was when he was alive. His death was a loss to us all. For a short while.

Is it too much to hope that I won't die as ignominiously as he did? With a church full of people whom we, the family, didn't know. A funeral for a man we didn't know. Loved and respected by all. Except us.

Is it too late to be someone other than my Father's son?

Or am I more than that?

These days

These days are always difficult. How often have I said in the last
few weeks that more people die in this month than any other? Is that a
comfort?

No, it's an explanation for the unexplained and unexplainable.

Death and dying are two different things. Happened or still happening.
Finite or with the fear of infinite suffering.

Because that is the difference of course, the pain in one is for the
living. The other for the dying.

Sent from my iPhone

The Christmas 'borrel'

The Christmas Drinks, the New Year's Drinks, the round trip has begun.

But I haven't.

I'm left here sitting on my own in a room full of assorted volunteers
who all work for the Hiv-association. Men, women but up till now no
children thank god.

Nobody says hello, nobody says "who are you?" even, most bizarre
experience I can tell you. I've given my time and energy for nearly 4
years and the only people who seem to know that is the Director and
one of the editors of Hiv News.

I'm out of here as soon as humanly possible.

Sent from my iPhone

World Aids Day

I'm sick of that fucking red ribbon already.

Add to the list Stichting Hiv Monitoring, Mr Director Professor Frank de Wolf, the Schorer and (almost) all of the rest of the 'Aids Machine'.

Well, that's got that off my chest.

For a while.

You see, that ribbon has nothing to do with me any more.

It has become a symbol of the 'Aids Machine'. An enormous machine that rolls forward with or without me. Its sole purpose to perpetuate its own existence, its sole aim in life to further itself, its 'raison d'etre' status/money/power.

Even in the Netherlands alone the cost of the 'Aids Machine' to the nation is horendously high - or at least we think it is because there is as yet no way to actually find out how much - and if someone did find a way he/she would probably be gently but firmly poldered away before it got out.

But the cost is not the problem as such, at least not to me. Lord knows a part of my very existence is dependent upon this money for medication etc.

My problem with the 'Aids Machine' is the amount of money that it produces ....

Not specifically the Pharmaceutical Companies. They are at least generally open and straightforward about their intentions, seeing no need to hide their profit and loss figures, relatively safe in their own high-powered multi-national world.

The 'Aids Machine' is a badly organised, dysfunctional, but extremely well oiled machine.

And no-one dares to say it.

Not even me.

Pigeon: Impossible

Thnx to Leo

Childhood

As a child I lived in my own small head. My own small world, protected
from the big world outside, a world I had little or no knowledge of.

The big world outside was full of dangers, but I didn't know that. I
didn't know that with the danger came also chances, opportunities.
Chances to interact with other people, experiment with relationships,
social constructions, which would have enabled me to make my own way
emotionally in the world.

But I didn't know this and as a result grew up the way I did, and into
who and what I am.

Sent from my iPhone

Schorer Monitor

Vorige week was de presentatie van de Monitor door de Schorer, en ik was er bij.

Een paar dingen ....

Dit keer was het geen pers-bijeenkomst, alleen zogenaamd mensen 'uit het veld'. D.w.z. GGD'en, Jellinek, Farmaceuten, enz - en - wij, Poz + Proud, de Hiv Vereniging.

Directeur van de Schorer, Ferdinand Strijthagen, opende het bijeenkomst met de volgende ....
"De Schorer Monitor is sec bedoeld om gegevens te verzamelen die gebruikt kunnen worden in het gevecht tegen Hiv."
"De Schorer is geen belangenorganisatie, het is meer een instituut, zoals Stivoro (Stichting Stoppen Met Roken)."

Dus .....

Alle homomannen die niet snapten waarom de Schorer niet voor hun gezondheid opkwamen kunnen het nu wel snappen - volgens de Directeur, daar zijn ze niet voor.

En als je volgende jaar weer gevraagd wordt om de Schorer Monitor in te vullen realiseer je nu wel dat je het niet voor jezelf, of de homogemeenschap in het algemeen doet - nee - het is alleen voor de Schorer zelf.

Poz.com

How Stigma Kills

by Regan Hofmann

People don't want us to: Cut their hair, Serve them food, Babysit their children, Marry them Or be their friend.* Why AIDS stigma is as deadly as the virus itself.

Defined as "a mark of shame, disgrace or discredit," stigma has long plagued HIV/AIDS. It is one of the defining characteristics of the disease, differentiating it from its biologically-parallel-but-socially-altogether-different retroviral kin: hepatitis, herpes and human papillomavirus (HPV). While we can chirpily discuss vaccinating our children against HPV as we choke down our Cheerios, and we can sit comfortably in front of commercials for herpes drugs, the mere whisper of the word "AIDS" often causes all polite conversation to cease.

We're not imagining this. In 2007, amfAR, the Foundation for AIDS Research, commissioned Harris Interactive to conduct a study among the general American public seeking their attitudes about women living with HIV/AIDS. The survey showed that the majority of Americans are uncomfortable around people living with the virus. More specifically, the study revealed that 59 percent of Americans are somewhat or not at all comfortable with having an HIV-positive woman providing them with child care; 47 percent of Americans are somewhat or not at all comfortable with having an HIV-positive woman serve them food at a restaurant, and 35 percent of Americans are somewhat or not at all comfortable with having an HIV-positive woman as their hairdresser. This study, which mined attitudes about HIV-positive women, flushes out that it is indeed the virus itself that makes people squirm. In other words, people don't fear HIV because (as some suggest) they misperceive it to be a gay or a black disease; they fear HIV and the people living with it, period.

The study also revealed that the vast majority of Americans are not comfortable with the idea of having a romantic relationship with an HIV-positive partner. Eighty-seven percent of Americans are somewhat or not at all comfortable dating someone who is HIV positive, and 89 percent of Americans are somewhat or not at all comfortable marrying someone who is HIV positive. One in five Americans said they would not be comfortable with having an HIV-positive woman as a close friend. Ouch.

The results of a recent survey on poz.com about stigma showed that our readers' perceptions of the general public's attitude toward people living with HIV are spot-on. Eighty-eight percent of you said that your fear of being stigmatized has made dating/relationships more difficult (remember, 87 percent of the general public said they're uncomfortable dating you), and 91 percent of you believe AIDS stigma prevents people from getting romantically serious with/getting married to you (89 percent of the general public agreed with you). That's very close statistical mirroring.

Given that HIV-related stigma is as bad as we perceive it to be, it's no wonder then that 65 percent of you said that HIV-related stigma has prevented you from disclosing to family members; 71 percent of you said it keeps you from telling coworkers; and 60 percent of you said you don't tell friends because of fear of being stigmatized.

One statistic we found particularly disturbing in the Harris study was that very few Americans believe that HIV-positive women should have children. In response to the question, Should a woman with any of the following conditions have children?, fifty-nine percent said women with cancer should have a child; 47 percent of people said women with depression should; 37 percent said women with multiple sclerosis should; 20 percent said women with hepatitis C should; 19 percent said women with Down syndrome should; and 17 percent said women with schizophrenia should. Yet, only 14 percent of Americans said they thought women with HIV should have a child.

This points to a root cause of AIDS stigma: lack of education. Too many people still don't have the correct facts about the disease. For example, women with HIV under proper medical care can usually have a child without passing the virus on and are likely to live long enough to parent the child. Since lack of information breeds fear and fear breeds stigma, one clear prescription for fighting stigma is renewed awareness and better education around the disease.

It would be one thing if stigma stopped with an attitude. If all it meant to be stigmatized was that some people didn't like us, it would perhaps be manageable, albeit uncomfortable. But when stigma gets in the way of our survival, that's another thing entirely. Thirty-four percent of you said that fear of stigma has prevented you from seeking care, treatment and support. And 19 percent of you said you don't disclose to health care professionals because of HIV-related stigma, a fact that certainly compromises the level of care you are receiving. Imagine how many people don't get tested for HIV because of stigma. It's estimated that one in five Americans living with the disease is unaware of his or her status. And according to the CDC, it's estimated that HIV-positive people who are unaware of their infection may account for 54 to 70 percent of all new sexually transmitted HIV infections in the United States. Seems clear to us that stigma is a barrier to individual—and public—health. Not to mention that 48 percent of you said fear of stigma has adversely affected your career. It's harder to keep a good job and afford medical insurance and prescription drugs if you're not performing at optimal levels at work.

But while much of the impact of HIV-related stigma is quantifiable, it is, arguably, those aspects of stigma not captured by statistics that prove the most devastating. As we went to press, more than 1,000 of you told us chilling stories of how stigma negatively affects your lives—breaking down your spirit and your will to live.

Only a small group of you spoke of how you fight stigma, standing proud and strong despite society's desire to keep you down. Some of you have found the inner strength and resolve to rise up in spite of people's fear and ignorance.

As a community of people living with HIV and as a society in general, we need to do a better job fighting stigma by reopening the dialogue about this disease and dragging the unseen facts and faces into the light. Because it is much easier to fear what we don't know. (Interestingly, while 85 percent of you said that President Obama and his administration are not doing enough to combat stigma around HIV/AIDS, 78 percent of you said that the HIV/AIDS community itself is not doing enough to combat stigma.)

It's a chicken-and-egg conundrum. Stigma around AIDS will only dissipate when the world is safe enough for people with HIV to no longer fear disclosing. Individually, many of us living with HIV who have disclosed in POZ or in our lives have seen that people can be supportive and kind once they understand the facts around the disease. (Sixty-seven percent of you said that people treated you the same, post disclosure.) But 87 percent of you said that the current anti-discrimination laws do not sufficiently protect HIV-positive people from being stigmatized, which means that things must change before we can afford to show our faces and change the way the world sees people living with HIV—for the better.

Forty-nine percent of you said that HIV-positive people's fear of being stigmatized is worse than the actual stigma. At POZ, we see repeatedly that this is true. For those who feel they are ready, and can safely come forward, speaking about having HIV can do much to erode the corrosive stigma that keeps us from good health. It bashes stigma when we show the world we have nothing to hide—and are nothing to fear.

Sent from my iPhone

Jackie Beat - Baby Got Front

the Mexican

What's there to say more about the Mexican flu jab that hasn't been said already?

Well, apart from the fact that I had it yesterday, it hurt less than the normal flu jab and I actually feel better today than I did before.

The conspiracy theories abound. Its either this or the end of the world in 2010 (or 2012).