A Boy, A Virus and the Education of a Community

January 20, 2014

Recently I was contacted by Brian Bridgeforth, a fellow Waynesboro, VA native and the little brother of a longtime classmate and friend, Patti. (I believe Patti and I met in Kindergarten in 1980, and graduated together in 1993.) Brian works for the Waynesboro Heritage Foundation and invited me to write a guest blog entry about how my testing positive for HIV at age 11 affected our hometown.

(To read the full post, please visit The Waynesboro Heritage Foundation website!
)

“Despite being born with the bleeding disorder, hemophilia, I enjoyed a
pretty typical childhood growing up in Waynesboro. I lived in a quaint
neighborhood, just a few skips down the sidewalk from my best friends.
Summers were spent swimming at my grandparents’ pool and many hours were
dedicated to the latest Atari games when I wasn’t outside pretending to
be Rambo in a game of war.

Yes, I am a child of the 1980s.

And one of the most impactful events of that decade was the emergence
of HIV/AIDS.  It was during a time when there were gaping lapses in
blood safety standards.  Due to my reliance on blood products for
treating my hemophilia I was at risk for HIV infection.  There were
signs that my immune system was compromised in the 4th grade when half
of my body broke out in shingles. I did not receive a standard HIV test
until two years later in 1987. It was the spring of my 6th grade school
year and, aside from a bout with strep throat, it was one of my best
years until I failed that “pop quiz.”

After I tested positive for HIV my mom informed my teacher of the
results. My teacher had concerns about the risk of transmission to my
classmates, and when she spoke with her doctor it started a chain
reaction of fearful reactions that led to me being kicked out of school.
I wasn’t allowed back in class for the last four weeks of the school
year…”

(To read rest of the post, click HERE!)

Positively Yours,

Shawn

New Adventures in HIV Medication

July 30, 2013

In 2002 I made a decision regarding my HIV medications- I’d been on combination therapy for 3 years after receiving an AIDS diagnosis in 1999, and the HIV medication most certainly brought my health back. But at the same time, I was feeling the side effects and was concerned about long-term side effects.

At the time, I’d read a couple of things about structured treatment interruptions and heard Larry Kramer rant about HIV drugs at my friend Stephen Gendin’s memorial. Larry yelled, “I have no ass because of these drugs! We should all take our medication for one week, then take a week off so they get half the profits!” Needless to say, he was pissed off about more than just losing a friend that day…

I’m fortunate that my doctor and partner, Gwenn, were okay with giving a structured treatment interruption a try. I was quite relieved when my t-cell count continued to climb, even with a week off, and my viral load remained undetectable or very close to it. In 2009 I wrote a column for Poz about my experiences with week on/week off therapy. You can read it here.

All in all, I’ve been happy with the results of the experiment. But last year, it felt like time to try a new combination. So I switched from Norvir, Reyataz and Truvada to Complera, continuing the week on/week off schedule.  After six months of experiencing changes in mood, from being more angry than usual to feeling depressed, I through in the towel and decided to go back to my previous combination.  But the lack of energy on that combination- which was quite severe during the first week of July- left me a bit shaken…

I was texting with a trusted friend about all of this, and asked how he dealt with side effects. “I don’t really have any,” he replied. I followed up on email because I had so many questions, and he confided that he approaches HIV medications the same way I do, but has implemented the strategy a bit differently. Instead of a break from HIV medication, he takes less than is normally prescribed but doing so under the guidance and knowledge of his doctor.

Needless to say, I was intrigued.

So I spoke with Gwenn about it at length and once again huddled with her and my doctor, who researched the idea. We’ve all agreed to give it a shot, and for the last week I’ve been taking 800 mgs of Prezista with 100 mgs of Norvir. In about five weeks, I’ll be going in for lab work to see how things are going.

Am I scared to experiment with this? Not really. Partly because of the last ten years of how I’ve been taking my medications. In terms of effectiveness, every combo I’ve been on has done it’s job of attacking the virus and neutralizing its ability to wreak havoc on my health. I’m convinced that far better treatments- and possibly a cure- are on the horizon, and it’s not insane to think that could be ten to fifteen years off. But I’m not interested in sitting idly by- I know I have a great shot at being around for the next big breakthrough in HIV treatment, but I want to be in the best position to enjoy the time between now and then. I don’t like living in a haze, or feeling like I need a nap after a fifteen minute conversation with friends.

I know a large part of my health is simply the culmination of living with this virus since 1984. But I also know that decisions regarding treatment can also affect how I feel. And, simply put, in my heart and mind I know it’s time for a change. I don’t mind not having that week off from taking my pills, and am not worried about forgetting to take them every day.

I’ll keep you guys updated. Wish me luck, and I sincerely hope this finds you well.

Positively Yours,
Shawn

My Poz.Com Exclusive Article, “Adventures in Baby-Making”

April 8, 2013

I had the pleasure of talking with Mark Zatyrka about he and his wife’s decision to have children using sperm washing. (Mark’s been HIV positive since childhood, his partner, Sasha, is HIV negative.)
Read it on Poz.com here:
Adventures in Baby-Making
Positively Yours,
Shawn

VLOG: Draw My Life

February 26, 2013

Here’s our latest video- it’s a Draw My Life video.  A lot of YouTube Vloggers are doing them, and Gwenn thought my life would work well in the context.  And I do like to draw, so I gave it a shot, thinking that a Draw My Life with a little story about HIV floating around out there might educate some folks… plus, it was fun to do.  A lot of work, but totally worth it.

Regarding our last video and the subject of How To Survive A Plague… was bummed that they didn’t win for Best Documentary.  I haven’t seen the others that were nominated, but I’m glad we have the time capsule that is this very powerful movie.

Hope your week has started off on the right track. 

Positively Yours,
Shawn

VLOG: Truthloader Interview, Win a Book!

January 15, 2013

Our second video of the new year? It’s mainly an interview we did with Truthloader, a new YouTube Channel dedicated to providing the truth on a vast array of topics, HIV included. Gwenn and I were honored to be selected as their featured vloggers this week!

Also, watch our video to find out how you can win an autographed copy of my book, My Pet Virus. Hope everyone is doing well!

Positively Yours,
Shawn

Interview w/ Books and Booze Podcast

September 13, 2012

I’ve been a bit quiet here in the blogosphere lately, mainly because I’ve been hard at work on new music and a screenplay for My Pet Virus. Last week I came out of my cave and spoke with the good folks at the Books and Booze podcast. You can hear the interview below!

Positively Yours,
Shawn

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Contest Is Over… Now What?

March 21, 2011

So the next installment of the Labtest Contest isn’t until July, when my labs are drawn two days before I spend a week celebrating my 36th birthday. But I can’t fall into the trap of looking forward to mid-summer excitement, which is four months away… so what does a positoid do to entertain himself?

I haven’t posted too much about finishing my second book, because I think I’ve posted in the past about “finishing” my second book. To be honest, I haven’t put the finishing touches on it to the point of where I’m willing to submit it to my agent.  One of the reasons why I haven’t obsessed over it recently is because writing takes away quality time with Gwenn.

Awwwwwwww….

I know, I’m being mushy.  But after the last go around with tweaking, writing, printing and reading my next book, I realized that the hours a day I was spending on it wasn’t worth the frustration it was causing.  And the doubt.  All the usual “writer crap”.  With My Pet Virus, I had natural writing spells followed by lulls that inspired the next batch of writing spells.  It was organic.  With the second book, I set aside time, put in the hours, and in a tangible sense I don’t have anything to show for it at this point….

By the way, the next book is a vampire book and I’m not embarrassed to divulge this.  I started a while back, before the first Twilight movie hit the theaters.  My reasoning for writing a vampire story was to do something different and indulge my love of horror: horror with a sense of humor.  When the moon is full or the mood strikes again, I’ll get back to it.  One of the problems with reasonably decent health (for me) is that I don’t feel like there’s a clock ticking.  If there was, finishing this book wouldn’t really be at the top of my priorities list.

In terms of time and energy, something that is far less consuming is music.  I’m planning to write some new songs this year, with hopes of releasing another Synthetic Division CD next year.  The appeal of doing music is that it’s instant.  I can write a song and share it with people in a very short period of time.  With writing a book, it’s different.  I accomplished a decade-long goal when My Pet Virus was published in 2006, and the messages I continue to get from people who are discovering the book today makes me feel like I’m contributing something to the planet even though I spend a lot of time drinking iced mochas and napping.

The next book will not have the personal impact that Pet did, because it’s a made-up story about made-up people, even though some real life problems do creep in.  That could be another reason why I’m having a hard time dedicating more time to it than I already have.  That, and sometimes when I read what I write I feel like I’m not very sharp.  Music trumps fiction writing because I’m a happier guy when I’m working on music.  So setting aside some time over the next few months for that is going to be my plan.

And we’ll just have to see if synthpop can help get those t-cells back up to the 600 mark.

Positively Yours,
Shawn

Watch, Friend and Follow me on:
YouTube, Facebook and Twitter
Website: ShawnandGwenn.com Also check out the lovely Gwenn’s Fashion/Coffee Blog
My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.

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My Pet Virus “Book Club” on Facebook

January 20, 2011

When my humorous memoir about growing up with HIV was published in 2006, I was doing a lot of self-promo for the book on MySpace.  I hardly ever log into that account these days, because it’s a Spam Hole.

mpv-cat-3.jpgEven though Facebook slinks closer and closer to the same fate as MySpace, I figured it would be smart to create a page for the book there and move over some of the pictures I received from people who were enjoying the book.  If you like the book and are on Facebook, join (Like) the group, I’ll be sharing more pictures and little knick knacks about the book, such as the following pearl of wisdom and insight:

At first cats think the book is about actual pets… but once they get over that, they seem to really warm up to the content of My Pet Virus.

Yes, I just quoted myself.  Join the group already!

Positively Yours,
Shawn

Watch, Friend and Follow me on:
YouTube, Facebook and Twitter
Website: ShawnandGwenn.com
Also check out the lovely Gwenn’s Fashion/Coffee Blog

My CD, Synthetic Division, A Symptom of Life, is on iTunes!

SHARE THE BLOG. NOT THE VIRUS.

Bookmark and  Share

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