November 2007 Archives

I just saw a newsflash on TV. A red ribbon is hanging on the White House, and President Bush is meeting with and thanking unnamed people for their work in HIV/AIDS prevention. Likely Abstinence-Only pushers.

The newsflash made me think back to ten years ago, when I had the privilege of being invited to the White House, where I met then AIDS Czar, Sandra Thurman and, briefly, Vice President Al Gore. I was nervous as hell, and couldn't believe that, at 22, I was actually in the White House.

Politically, the ten years since then have been so hard to deal with. Everything I try to do in sharing my experiences with HIV, and how condoms have helped keep Gwenn- my wife partner- safe from HIV for 8 years now is not supported by the current administration. Teachers in public schools are restricted from talking about condoms, for fear of losing federal funding. It's been a major step backwards, and I'm hoping that next year's election results begin to repair some of the damage that has been wrought.

So much of politics are personalities, but there is a great site that matches you up with the candidates who most closely resemble your own views. Check it out: www.vajoe.com. For me, Kucinich ranked #1, Obama #2, and in dead last place was Fred Thompson. The highest Republican for me? Rudy.

Give it a whirl, the results could surprise you. Hope everyone has a decent World AIDS Day tomorrow. Here's to all the positoids we've lost, and to what we all have to do to create an environment where the stigma of living with HIV is lessened. Positively Yours, Shawn

10 years ago, World AIDS Day 1997.

*UPDATE: Sharon got bumped for the football player who was murdered.*

Tonight, this month's POZ Magazine covergirl and HIV/AIDS activist, Sharon Stone, will appear on Larry King Live.

She'll be there to discuss the search for the AIDS cure (yes, it's still happening out there somewhere in the world) and the current state of HIV. But who knows what will happen when Larry starts firing questions. Will she go all Seinfeld on his ass? Or just politely walk off like the guy who killed- er, operated on- Kanye West's mother?

Here's how my crystal ball envisions the proceedings...

Sharon Stone: Larry! Good to see you.

Larry: Sharon Stone!

Sharon: Yes!

Larry: (looks to off-camera stagehand) I thought this was going to be a sit across from one another on a stool interview like Bill Maher does.

Sharon: Larry, it's too early for a Basic Instinct joke. Did you know this Saturday is World AIDS Day?

Larry: Sharon Stone!

Sharon: My work with AmFAR...

Larry: Do you have AIDS?

Sharon: No, but that doesn't mean I'm fearful of people with AIDS.

Larry: Ya got it from that husband, Charles Bronson. He slept around a lot, had a death wish from what I hear.

Sharon: No, no. Phil Bronstein. And we're no longer...

Larry: Yeah, right. Bronstein. Got bit by that dragon, got AIDS from it and passed it to you. Well, good thing he doesn't have the AIDS anymore.

Sharon: My God, Larry. I'm speechless.

Larry: Sharon Stone! Rugged husband mauled by dragon. Lost her voice to the AIDS. What else will she lose next? Stayed tuned to find out.

(Sharon is crying as they go to commercial break. When the program returns, she is gone, and Donnie Osmond is there discussing future variety show which will co-star his sister.)

Don't say you haven't been warned.
Positively Yours,
Shawn

Not Phil Bronstein.

I know my blog is a Thanksgiving tradition for a lot of families, who lovingly gather around the laptop and read HIV/AIDS statistics which, along with a 4,000 calorie meal, helps to induce a nice late afternoon slumber.

But this year, I'm changing things up. Instead, I'm going to share a story about man and nature. Or, rather, woman and nature.

On Tuesday night, Gwenn and I went to Kiyoto, the Japanese steakhouse. See, my brother works late-shifts, and last year our family started this fine tradition. And it really is a lot of fun: no one has to cook and nobody is stressed out over it. I got to see mom, dad, my bro Kip and sis-in-law Deanna as well as Katelyn, my niece and a talented writer in her own write... er, right. (She's 8, and would never use such a cheap trick as the ass-end of that last sentence.)

A Terrible Holiday Story

We get to the scene, and there are a couple of cars on one side of the road, and another car on the other. Then I see a 50-ish year old woman walking across the road. Just as I wondered what she was doing, I noticed a deer sitting on the left shoulder, and the woman appeared to be approaching it. "Huh?" Then, without hesitation, she wrapped her arms around its neck and attempted to lift it from the ground. The deer struggled, and I waited for the scene to get worse when the furry friend inevitably knocked this person unconcious. It seemed to be a death-defying move, at least it was from the perspective of someone with a bleeding disorder. But no, Bambi just got up and tralloped off. Then, as the traffic moved rather quickly, there it was: another deer in the middle of the road. Possibly the mate of the one that was there moments before, waiting. Until it was interrupted, that deer on the side seemed to be looking towards the fallen one, which was apparently dead. Gwenn was bummed. I've grown up seeing a ton of dead deer on the road, and even a few miles on I could only think of the woman: what the hell was she trying to do?

This Thanksgiving, as some of you are with your families, you will probably be one of the above characters. The misguided do-gooder (the lady checking on the deer, overreaching and causing annoyance), the annoyed (the deer that got the headlock), the victim of bad timing (the other deer and the car that hit it) or the gawker (you just sit on the sidelines and take it all in).

Me? Today I'm just going to stuff my face with as many mashed potatoes as it can hold.

Anyway, I really just wanted to wish everyone a nice, peaceful day. This story kind of sucked, so my early Christmas present to you and your family is this: next year, I'm bringing the statistics back.

Gobble, Gobble!
Shawn

PS... to everyone who has supported the Epidemic in a Box online campaign thus far: I'm very thankful!

World AIDS Day has been plagued by boring themes for years. If you don't believe me, check out the list below.

2007 - Stop AIDS; Keep the Promise - Leadership
2006 - Stop AIDS; Keep the Promise - Accountability
2005 - Stop AIDS; Keep the Promise
2004 - Women, Girls, HIV and AIDS
2003 - Stigma & Discrimination
2002 - Stigma & Discrimination
2001 - I care. Do you?
2000 - AIDS : Men make a difference

There were more, but I wanted you to keep reading.

Now I'm throwing my jimmyhat into the ring, so Keep The Promise needs to move over for...

You Can:
1. use the image as your profile icon
2. email the image to friends, reminding them that World AIDS Day is on December 1. (Friends love these kinds of emails. Really.)
3. post the image on your social networking profile through December 2.

To get the image, follow the directions below. And remember, this epidemic has put too many positoids in a box, I say it's time that we all return the favor.

Positively Yours,
Shawn
ADD THE CAMPAIGN IMAGE TO YOUR PROFILE!

Here's how - First click inside the text box below the image,

Hit Ctrl+A to select all, Ctrl+C to copy it,

Then paste it in your myspace profile by hitting Ctrl+V

<a href="http://www.myspace.com/mypetvirus" target=blank><br /> <img border="0" src="http://www.phasthost.com/~hemopos/images/epidemicinabox.jpg"</a><br />

Last night I had nightmares.  Not of the old Sustiva-drug taking days (Sustiva, the infamous HIV drug famous for crazy mental side-effects), but of a more troubling nature.

There were no crazy vivid colors, or alien species. I did not possess curious mutant ablities.  No, these nightmares were truly frightening: they were realistic.
The toilet got stopped up.  For some reason Gwenn and I were both in the bathroom when this happened.  I stood in front of the toilet, blocking her view of a hint of a terd, peaking out from the hole at the bottom of the water, like a scared rabbit in a foxhole, surrounded in a field full of wolves.

"Where's the plunger?"  I said, cooly. 

And Gwenn pulled one out of thin air, as she often does at home in domestic situations that involve items that I see on a daily basis, but cannot quite place when I need them.

Nothing strange there.

I plunge once.  And flush.  Then again.  On the second flush, however, the dream does enter the unrealistic realm when the water geysers up the way Johnny Depp's blood did from the water bed in Nightmare on Elm Street. 

The silver lining?  The water looked fresh.

Then, the next dream involved travelling.  The airline lost one of Gwenn's bags.  A disaster, since we were flying to four different schools to speak, and this was the first leg of the journey.  This meant her clothes, make-up, and everything were gone.

This meant the entire week was ruined.  Every spare moment would be spent shopping:  airport.  rental car. mall. hotel room.  school. three hours of sleep.  repeat.

Whenever I remember my dreams, or think about them well into the next day, I always try to place their origin.  This one's easy: it's a battle between the problems with work and the problems faced at home.

Unless, of course, I find myself on an airplane with a faulty toilet.  If that happens, I'm pretty much screwed.

Positively Yours,

Shawn

The following video has raised concerns among the readership of My Pet Virus, in particular the chapter entitled "Ric Flair & Me":

In My Pet Virus, I discussed my childhood/adult infatuation with "The Nature Boy" Ric Flair, whom I met shortly after I was diagnosed with HIV in 1987. In the above video, it is revealed that all wrestling fans are paid actors, and I feel the need to come clean now.

I received a small fund for including the story in my book, and still get paid bi-monthly to talk up wrestling at HIV/AIDS events. I think I get paid more than the average salary alotted to wrestling, since the book continues to reach new audiences via my heart-wrenching medical ordeal and the following photograph:

Positively Yours... Or Negatively Yours?...

Shawn

PS... everything about this post is false. Just wanted to share the video, which I think is hilarious. And yes, I still watch wrestling.

Let's do the time warp: Just about a year ago I was finishing up my book tour for My Pet Virus. Check out the blog HERE.

Several months ago I posted a couple of times about a friend, Jordan, who was in a serious automobile accident.

I entered my 30's with grace.  An uncommon grace, really.  I didn't go in kicking in screaming like Gwenn did before me.  Nope, I held my head high.

Two and a half years later, and I still don't feel old.  Hell, I'm just getting going.  It wasn't until this weekend that I realized that I am ancient... why the sudden change in attitude? 

Because I'm a museum piece. 

The Children's Museum of Indianapolis just opened a display entitled The Power of Children: Making a Difference, and it features Ryan White and some cool RW artifacts, including a faux-locker that whispers when you open the door ("He'll spit on you.."  "He has AIDS"... and other bad things) and items from his bedroom, which is recreated.

So where do I come in?  Along with Mark Hoyle, I make up a section called "We Were There, Too".  Check out pics below, and visit the official website of the Museum for more info!

Ryan White's room, and some info on the trailblazing thinblood and hemophilia.

This is slightly reminiscent of John Bender's locker from The Breakfast Club.

Rocking the Pac-Man t-shirt.

Despite my presence in a museum, I don't feel old.  But I do feel fortunate to have made it.  Mark Hoyle and Ryan White passed to spirit with so many other good positoids, and events like this just make it so obvious that I need to enjoy my life- which I do!- and go on with spreading the word about HIV/AIDS in their spirit.  To continue the fight against ignorance in my own way.

So, if you're ever in the Indianapolis area, pop on in and check out the display.
Positively Yours,

Shawn

So this week is Green Week, right? Well, I think my week-on/week-off meds schedule makes me green enough. That's half the electicity and whatever else used to maintain my health through meds.

I know, that pat on the back isn't fair if some readers take meds all the time, which most do who have access to treatment. I'm just dicking around, as usual.

I went week on/week off years ago because the general thinking was that longterm side-effects of HIV meds were considered a serious threat. By 2002, when I first did it, I'd had friends who'd tried everything and still died, friends who'd lost vision, developed diabetes, all kinds of things associated with side-effects of HIV meds.

With my hepatitis C co-infection, I thought my liver would appreciate a, "vacation's all I ever wanted, vacation had to get away". So, in a way, hepatitis C may have led me to a healthy decision for myself. (Note: In 2005, it was discovered that my hepatitis C virus was, in fact, non-threatening to my longterm health. I was in the "Lucky 15", 15% of hepatitis C non-progressors.)

So for a year and a half I've been doing week on/week off with my HIV meds, and I've been happy with the results. Which is why I was surprised when I heard the new word on treatment is the old word. An article in Poz said, basically, that the general thinking now is that those old side-effect worries were nothing more than HIV progression.

What?

After roughly 15 years of watching and studying HIV progression before combination therapy (the multi-pill approach) doctors and HIV/AIDS researchers had no grasp of HIV progression? Or that they genuinely couldn't figure out what was a side-effect and what was the virus once meds were introduced into the equation?

I knew my health decline in 1999 was a result of HIV progression. Fatigue led to more fatigue and loss of appetite: my body was shutting down. It needed help against the virus.

I know for a fact that my first ten months on meds, I had diarrhea. When I switched meds, that stopped. I don't think my virus was causing that, or the nausea that stopped as well.

For two years after that, I took another set of drugs. Then realized I felt crazier than usual. Side effects switched from physical to mental, which was a relief until I realized what was happening. Went on week on/week off for two years, and felt less crazy.

So, I had a brilliant idea which festered from my good health. That was to cease meds for a few months so I could really clear my head and finish my book. A side effect of that decision? My virus actually progressed, out-of-control, causing my immune system to freak out, making me have the worst nosebleed of my life.

That sucked. That's why I don't take meds lightly. But I won't let side effects of the drugs off the hook as easily as the HIV/AIDS establishment. They are real. Don't tell us that it's all the virus, don't insult our intelligence. We can handle a world of grey, where the effects of the virus and side effects co-exist.

Now I've been on my second round of week on/week off for a year and a half. I'm good at remembering when I restart, and when I stop, and my t-cells and viral load have remained stable. I'm not saying this would work for everyone- other factors come in such as a healthy living environment and I don't abuse substances outside of the quarterly letting-down-of-the-hair.

But I am saying that this should be considered. I feel compelled to write so, because I know it's just not on the table. God, I think I read it somewhere and somehow my doctor agreed to monitor the results. But it was only because that thought or ideal was out there. And now it's not. And I don't think my improvements in health and lessened side-effects are some major fluke.

So here's my Green Week Challenge to the Pharmaceautical Companies or the Bill and Melinda Gates Foundation or Oprah or anyone else with hundreds of millions of dollars and more than a passing interest in HIV/AIDS: Fund major studies on week on/week off HIV treatment.

Positively Yours,

Shawn

No, I'm not gettin' pervy.

My friend, Erin Weed, is an ass-kicking machine who teaches women's self defense. She has written a book called Girls Fight Back, and has just launched her radio show on Women On Top Radio... and none other than Gwenn was her first guest! You can hear the radio program and meet Erin by reading her blog.

Enjoy!

Positively Yours,

Shawn

You only fall for Erin Weed's "Hey, you got something on your shirt," prank once. Once.

I want there to be a cure for hemophilia. Preferably within my lifetime.

In the meantime, I want to support, loudly and passionately, the person whom I feel will make the best President of the United States. I'm disappointed that, in political speak, "forward-thinking" and "no-hoper" are synonyms. I'm upset that the Democratic Party is rallying around the biggest hawk on their squad. I'm embarrassed that two families will have dominated American politics for over two decades, and am also afraid because I know I live in a country that will not be able to elect a black man or a white woman in the year 2008.

In my lifetime, I'm more likely to live to see China- the human rights capitol of the world- become the dominant power of the world than I am to see a cure for hemophilia, or any other illness I am currently living with.

In the last seven years as an HIV/AIDS educator, I've noticed a decline in the knowledge of how HIV is spread. YouTube is funny, but read those comments. The anonymity of internet has awakened us to the sad fact that racism and homophobia are simply part of our cultural DNA. We cast votes as a nation, sheep-like, to deny the right for two people to express their love. And, God forbid, visit one another in the hospital should one fall ill.

My body is healthy. I love my country, and the fact that I have access to medications that have prolonged my life. But my mind is sick, at least it is whenever I think about politics and that there is no accountability in our government. That closeted gay men are passing anti-gay legislation.

Naughty, naughty boys.

The problems fall on both sides of the political spectrum, but it was the Republican party that pushed the current administration to the top, and it was the Democratic party that refused to caution the American people about whether or not we really want to elect a recent President's son in a country where we tell our schoolchildren that anyone can grow up to be president.

I don't know about you, but I think the daughter of a Clinton or a Bush has a much better shot than the thinblooded son of Pam and Buddy Decker.

Just some thoughts. I feel better now.

Positively Yours,
Shawn

Earlier this week, Gwenn and I went to Cleveland to visit her mom, and we were on our way back home on Halloween night, and Gwenn was feeling really guilty on the flight home.

"I left the front porch light on," she said.  It was just eating her up that little ghouls and goblins were ambling up to our door, knocking and knocking to no avail.  Fortunately, when we got home we weren't treated to eggs or anything on said door.

The next day was the Mexican holiday, the Day of the Dead.  Go Wiki it, it's a pretty cool thing.  Ironically, I felt really alive after a couple days of sluggishness, and woke up bright and early, ready to tackle the Day.  We went to the Bluegrass Grill for some downhome breakfast, then to Java Java, where my friend was shocked to see me at 10 AM.  Nothing like a Day of the Dead spook.

With my iced mocha fix, Gwenn and I walked down the downtown mall a bit, and there were some Day of the Dead decorations in the windows, which was fun to look at.  Then it was back home to pack up my things and fly out at 1 PM down to Orlando for the National Hemophilia Foundation's Anual Meeting, where I am now.

I usually don't embarrass readers in my blog, but I've been on a roll lately and Britney was actually honored to be posted.  When I got here last night, one of the cool folks who works at AHF (American Home Federation, the good folks who supply my hemophilia meds) gushed about this little 'ol blog.  So here's a shout out: Thanks for reading!  No, you're not stalking me, you enjoy a finely written blog by a handsome bleeder, and you are not alone.

I hope.

So yes, today I do some light lifting at the AHF booth in about a half hour, signing books and greeting the thinblooded masses, many of whom I recognize from last year's conference and HFA (Hemophilia Federation of America, I know, this is more confusing than pro wrestling) conference me and Gwenn spoke at in Albuquerque. 

OK, no neat tidy bow at the end of this one.  Happy November.

Positively Yours,

Shawn

Today is the Mexican holiday, the Day of the Dead. Yesterday, I tried to post a blog on here, but was unable to access the poz directory in the Charlotte airport. Instead, I got this message: "Forbidden Category: Sex Education".

Talk about a Halloween scare.

Here's my blog from yesterday, before being spooked and reminded that the issue of Safe Sex is officially dead in this country. OCTOBER 31

A couple of weeks ago I blogged about that magazine, Grazia, that interviewed Gwenn. How they had a promo of the article on their web site, which read: "Meet the young woman who risks death every time she sleeps with her husband"?

Well, we finally got the issue in the mail.  And here's what they had on the cover: "Sleeping with my husband could kill me!"  And then again, inside, splashed across a picture of us standing together, not smiling.

If there's a morbidly funny aspect to this, I guess it's that they used a quote from Gwenn that was never uttered, which should be obvious to the reader once they get through the article, where it never appears.  Because Gwenn would never say such a ridiculous thing.

This flies so much in the face of what we've tried to do as educators, which is to empower both people with HIV and without.  What ticks me off is that they put those words in Gwenn's mouth to get people to read it.

So, if you are in need of a last minute Halloween costume idea, you may want to go as my penis.  Because apparently it's pretty scary.  I can give you specifications if you are interested.

Positively Yours,

Shawn