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My Hep Story

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When people think of my medical conditions there tends to be a pecking order... HIV gets top-billing, then hemophilia (raise your voices, my fellow thinbloods!)... and at the end of the line is poor ol' hepatitis. Hep allowed me to share my story about how hepatitis has affected my life on their Hep Stories page.

It's been an interesting journey. As a kid, I forgot I even had hepatitis B because hemophilia cast a much bigger shadow on life. Then, as an adult living with HIV and dipping my toes into combination therapy, hepatitis C influenced my decision to take it easy on my liver and do a week on/week off schedule with my HIV medications. (Though I've been taking my HIV meds continuously and without interruption since 2013, I wrote about my week on/off strategy for POZ in 2009.)

See, there I go again. Linking to an article about HIV when this is supposed to be hepatitis's time to shine. I better wrap this blog entry before hemophilia starts to get jealous, causing a spontaneous nosebleed or an erection that lasts for more than 4 hours.

Positively Yours,
Shawn

GwennNina2014.jpg Nina and Gwenn catching up over coffee in September.

Last week I tuned into Couples Therapy on VH1 because I'd heard that Bob Bowers would be making an appearance. I'm a huge fan of the One Tough Pirate, former POZ coverboy and current HIV asskicker. Though it wasn't the episode my beloved longtime activist friend was appearing on- HIV was a central theme, as one of the castmates revealed their HIV status publicly for the first time.

Evel Dick is no stranger to reality TV- he has appeared on Big Brother twice, winning season 8 and leaving season 13 early due to personal reasons. The personal reason being that his blood test for HIV (a requirement for Big Brother contestants) came up positive. On Couples Therapy, Dick's girlfriend wasn't comfortable with his wanting to come forward with his secret.  I recognized his despair; he was in that undeniable moment when you can't fathom another day trying to ignore something that is literally a part of your biology. You have to break out.

During his session with Couples Therapy's resident therapist, Dr. Jenn, he was asked how he contracted HIV right off the bat. I wasn't thrilled with the question, neither was Gwenn (my partner who, like Dick's partner is HIV negative). About a week later, my good friend Nina Martinez, who has been HIV positive for most of her life, started a discussion with Evel Dick and Dr. Jenn on Twitter about the question of how HIV was contracted. Gwenn joined in and I soon followed.

So, without further ado, I'm going to pass this one on to my guest blogger, Nina, who has gone through the trouble of organizing a Twitter conversation and making it readable. There are also links to the show, and her thoughts on why the question (and answer) to "how did you contract it" was bothersome. It's a must-read in my opinion and I really appreciate Evel Dick and Dr. Jenn's willingness to share their perspectives with us.

This is best viewed by opening this PDF: "How You Talk and Ask About HIV Matters" by Nina Martinez (PDF) (Or click the tweets that are just a tiny sample of the conversation!)

 twittereveldick.jpg

Did you click the image? Do it... c'mon...

There ya go! Okay, now that you heard from Nina and everyone involved, I just want to end by saying that, yes, how we discuss HIV in private and in public ultimately matters. For the newly diagnosed it's tricky territory juggling the raw emotions of testing positive with an unknown etiquette. I know, I made quite a few mistakes when my desire to speak out preceded my understanding of the various landmines on the field. Professionals, like therapists, doctors and nurses, also need to be sensitive to HIV's social ramifications- which often overshadow the medical reality of living with the virus and is what keeps people silenced who are living with it.

I hope Dr. Jenn reads this blog entry and gets why the bluntness of the question is problematic at best and traumatic at worst for a lot of people with HIV. And I wish Dick all the best in this new phase of his life that includes living openly with HIV.  I hope he and his partner really dig in, get informed on actual transmission rates for serodiscordant couples (astronomically low) and realize that their relationship can be a safe, intimate and loving one.

Positively Yours,
Shawn

My 10,000 Days of HIV Summer

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A few months ago I was curious about how many days I've been diagnosed with HIV. I did the math, starting at my diagnosis in March of 1987.  Turned out that this July marks roughly 10,000 days since a test result sent shockwaves through not only my family but my community in Waynesboro, Virginia, as well.  I was a scared kid at that time.  I just wanted to ignore the bad news. 

I didn't know my prognosis then- which was that the best case scenario saw me living another four years, to my 16th birthday.

Today, as of this post I am two days shy of my 39th birthday.  And I'm not ignoring the news- tonight I'm actually speaking to a local news outlet (WHSV) and my experiences living with HIV.  That kid who got diagnosed so many years ago could have imagined surviving- but would have never been able to see himself living openly with HIV.

So this summer is special.  I'm really enjoying it.  And I'm sure, if the fates allow, that I could make it to a 20,000 Days of HIV Summer in 2041... though, I'm thinking that by then they'll have long since figured out a scientific solution for HIV as well as many of the other medical issues that affect us.

No matter what the future holds- I'm ready. And I'm happy as hell to be here.

Positively Yours,
Shawn
Soccer is the most popular sport in the world. But in the United States it's a polarizing topic of discussion, not unlike the issue of abortion, Michael Bay reboots and fanny packs at theme parks. (They're practical, y'all.)  This summer, I've come down with Soccer Fever.  Not since the World Cup in 1994 have I been so into the sport.

I wanted to talk about the World Cup, so I went to the only former soccer pro I know: Ethan Zohn. A co-founder of Grassroot Soccer, canzer crusher and Survivor Africa winner shares his thoughts on HIV, this year's World Cup tournament and what it means to truly survive life. (NOTE: Ethan's answers submitted before the Semi-Final matches between Brazil/Germany and The Netherlands/Argentina. He knows his shit.)
ethanzohnnohate.jpg


So, I gotta know, Ethan: do you have any favorites in the World Cup?

Of course I do, I live for World Cup. I have been to every World Cup since 1994. Before the cup, I felt Brazil would crush everyone. But now, I'm leaning towards an Argentina / Germany final with Argentina winning. Plus I love yelling out the name 
Schweinsteiger at random moments throughout the day.


What's up with that dude who bit the other dude? Is that the craziest soccer foul you've seen?

That dude is Suarez, probably one of the best players in the world. To be honest I think he in love with 
Giorgio Chiellini. That was a love bite, not a foul. Plus Uraguay, where Suarez is from is the first country to regulate legal production, sale and consumption of marijuana. What do you expect?

I'd expect a more chill Suarez, but I've known people who freak out on the pot... a friend of mine... someone I know quite personally. He becomes a panicky mess... anyway...

After winning Survivor, you used the prize money to found Grassroot Soccer and help utilize the world's love of soccer in the fight against HIV.  Several years later, you were diagnosed with cancer. I know you didn't found Grassroot to gain cosmic favor, but... you getting cancer after going to bat, er, going to kick ball for the HIV community, was one of the lamest fouls I've ever seen in the sport of life. How are you feeling these days?

Ha! True, I need to have a word with the referee of this game of my life...who is that? God? David Hasselhoff?

I'm feeling great and excited I'm alive and strong enough to drink beer and watch soccer all month. In the years leading up to my cancer diagnosis I have been working hard through Grassroot Soccer, to help prevent young kids in Africa from contracting this life threatening disease. I do not know what it is like to have HIV, nor do I have HIV.  But, I do know what it's like to walk into an office and get handed a very scary life ending diagnosis. Getting cancer gave me some street cred. Now I just want to do everything in my power to make sure others do not have to go through the same crap we went through. Can I get a "hell yeah"....

Hell yeah!  Lastly, any big goals for Grassroot Soccer during this World Cup season, or any of your other charitable efforts?

Where do I begin!  We always have cool events and fundraising campaigns. Right now,
WHEATIES (the iconic cereal that always has amazing athletes on their boxes) is running a contest #WheatiesNext - 5 up-and-coming athletes in a voting contest for who gets on the next box. Each picks a charity to benefit.

Our newest Pro Ambassador, Christen Press, is in the contest and we are her charity - this is a big contest and we are one of the 5 chosen charities - woo-hoo! Check it out here:





Thanks, Ethan!  Enjoy the rest of the World Cup. And the beer, you've earned it!
merce.jpeg
A couple of weeks ago I blogged about Merce- a humorous web series that is centered around an HIV positive character living in NYC. I recently sat down with co-creator, Charles Sanchez... meaning, I sat at my laptop and fired him some questions and he sat at his and answered them. Enjoy!

Donate to the project here!
(anyone who donates $25 or more can get a signed copy of My Pet Virus... I have 5 available, so just leave a Comment on this blog entry to let me know you donated and I'll make contact to get a mailing address! -SD)

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Hey Charles! Love the concept for Merce- how long have you had the idea and what inspired it?

Hey, Shawn! Let me just say how happy I am to have met you and how much I enjoyed your book. I'm totally a fan. 

The idea for Merce came kind of as an accident. A few years ago, my photographer friend Dustin approached me about wanting to do some videography work, so he asked me to write something. Being a bit of an over-achiever, I wrote five things. Just silly monologues. We started filming them, and then Dustin went and fell in love, and backed out of the project.

I brought in my pal Tyne Firmin, who's an amazing director and actor, but had zero filming or editing experience. We shot what ended up being a whole web series, called Manhattan Man-Travels, truly ghetto-style, mostly for the joy of creating. Absolutely no budget. Very Judy and Mickey "Let's-put-the-show-on-right-here-in-the-barn!" kind of thing. 

Merce spoke directly to the camera and we followed him through many crazy romantic situations, from dating and trolling the internet for sex to him being in an actual relationship. We feel like we have something really special in this character, and want to up the production values and see if we can reach a wider audience. We've added characters for him to interact with and focused the musical fantasy elements (every episode will have a short musical number). We decided to put Merce's HIV status more to the forefront, since there's no character in mainstream American media that's HIV positive.

And an HIV comedy? Well, that's crazy, right?  We didn't set out to, but we lucked into doing something that no one else is doing.

Do you have a favorite HIV positive character from a movie?


Huh. That's a hard question. There are a lot of movies, plays, musicals that feature HIV characters that have moved me, or that have resonated with me somehow. My first thought is not to a character, but to the song "Will I" from Rent. That song never fails to choke me up, because as strong and healthy as I am, the seriousness of HIV never leaves me. And also, I think it's a common fear that everyone has about life, "will I lose my dignity? Will someone care?"

But I haven't answered the question. Buzz from the play and movie of Love! Valour! Compassion! He deals with his status with humor, sometimes acidic humor, but he's authentic and courageous and funny, and doesn't let his HIV change who he is. 

If you could give any character from a mainstream movie HIV (to make them more interesting) who would it be?


Oh, gosh! I don't know! Maybe Bridget Jones. With all her pouty angst and weight issues, and yet those dreamy men still seem to fall for her. What would happen if she also had to worry about whether her panties were still white, because maybe her Kaletra was causing some poops-a-daisy problems?

That would make for some good comedy.

Or someone ridiculous maybe, like Wolverine or Harry Potter. Of course, if Harry Potter had HIV, he could just zap it right out of himself. He'd just take his wand and say, "Heenis-a-penis-a, no HIV-ness-a!"
harry-pozzer.jpgI like that idea!  How is fundraising for Merce going? Deadline? And what's the plan if you make your goal, and what's the plan if you don't?

Oy, this fundraising is crazy. It's stressful. We've raised about 74% of our budget right now... the deadline is midnight July 4th. We're in good shape, and I'm pretty optimistic that we'll reach our goal. I think that people are interested in seeing what a comedy about an HIV positive dude could look like, so I'm confident that folks will be willing to give us $10 or $20 or more to help make it happen. Our budget will make sure that the show is colorful and professional looking, will allow us to bring great, talented film artists to our team, from a cinematographer and editor to designers and fantastic actors.

If for some reason we don't make our entire budget, then Tyne and I will just have to get a little creative. Perhaps we can find some hookers who would donate some time for the cause. Or I may try stalking Yoko Ono. I totally think she'd help us out if she knew about Merce

Tyne and I are determined. We're going to make Merce happen no matter what. It's inevitable.

(Check the link for other incentives to donate... and don't forget, anyone who donates $25 or more can get a signed copy of My Pet Virus... (while supplies last!) I have 5 available, so just leave a Comment on this blog entry to let me know you donated and I'll make contact to get a mailing address! Let's make Merce happen! -SD)

Gwenn Gets Tested For HIV

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Today is National HIV Testing Day. It's so important to know your status. Last year, my partner and I made a video to show just how easy it is to get tested. Click here to find a local resource in your area, or consider an over-the-counter at home testing kit like OraQuick, which you can order discreetly on Amazon.com.

Positively Yours,
Shawn
829.JPG
I went in for my routine lab work last week.  Too lazy to do a contest, I just figured I would land in the circa 600 range that has been the norm for me over the last few years. (Very thankful for those results.)

So I was shocked when the results came back... 829 t-cells!  Since I've had HIV, I've never had over 700 t-cells.  From my diagnosis in 1987 until 1998, they hovered around 200 before finally crashing.  After starting meds in 1999, the t-cells responded by multiplying... and getting stronger.  The last big jump like this I had was back in 2008, when my count jumped from 450 to my previous record, 674. But then it quickly settled back down into the 500 range.

The most important thing is to feel good. And I've felt pretty good recently.  The funny thing is that my intention this go around was to adjust my MGs, bumping down from 800mgs of Prezista (with 100mg of Norvir).  I've had more bleeding episodes since starting this regimen in June of 2013, and I'm sure Prezista is the culprit.  But, things have settled down a bit.  Maybe it was just a temporary side effect?

I'm not gonna change anything right now, because I'm curious to see if the count stays this high.  I doubt it will- and I'm okay with that. I'm not greedy, just want enough t-cells to stay healthy.  Pass the bonus ones along to someone who really needs them.

Will definitely have a Labtest Contest at the end of August. Til then, my your t-cells, and more importantly, your spirits, be high.

Positively Yours,
Shawn

The New Meaning of 'HIV Free'

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Remember when "HIV free" simply meant living without the virus in your body?  Well, terrible laws and even worse implementation have created a new definition for this term.  Now, "HIV Free" means the release of someone who was erroneously sentenced under HIV disclosure laws.

Not familiar with these laws?  The Sero Project can get you up to speed better than I can. But basically, in many states, if you are HIV positive, you can be held criminally accountable for having sex with someone if you don't disclose your HIV status... even if you wear a condom.

The new HIV Free experienced a victory last week when the Iowa State Supreme Court overturned the conviction of Nick Rhoades.  POZ did a feature of Rhoade's plight in 2012.  I'm happy for Nick, and the hope is that this ruling will pave the way for other states to dial back their horrible HIV laws.  They don't work in preventing HIV- quite the opposite, I think these laws scare people away from getting tested for HIV. 

Mark King attended this month's HIV Is Not A Crime Conference and wrote this powerful blog entry about it. Watch his video below.  We need to do everything we can to make people with HIV... HIV Free.

Positively Yours,
Shawn


Gwenn and I recently spoke with Brad from the Staunton News Leader about our experiences as educators, how we approach sex in our relationship and what it was like testing positive for HIV in 1987 in nearby Waynesboro, Virginia. (Staunton is about 10 miles away from my hometown, and 40 miles from where I currently reside.)

You can read the article here.




Positively Yours,
Shawn
super-vaughn-ripley.jpeg(CLICK HERE- Vote for Vaughn in "Healthiest Lifestyle" category... you can vote once a day! Thanks!)

Hey y'all!

A short while back, I wrote a blog post about Vaughn Ripley's attempt to be the first person living with HIV and hemophilia to grace the cover of Men's Health. He was leading the contest until very recently, and needs every vote coming down the home stretch to win.

Remember- you can vote once daily!  The voting period ends soon. Let's get Vaughn through to the next phase so he can show just how strong our community is.

Positively Yours,
Shawn


Speaking

Shawn & Gwenn
Since 2000, Shawn and Gwenn have been speaking about sexual health together, sharing their personal story and empowering others to be safe. If you are interested in having them speak at your event, fill out the Contact Us form.
 

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