Help Honor Ryan White’s Legacy- Takes One Minute

April 8, 2014

Today marks 24 years since Ryan White’s passing at the age of 18.  Born with hemophilia, Ryan became the adolescent face of the epidemic when he was kicked out of school for having HIV in the mid 1980s. You can learn more about Ryan by reading this Poz article, “Remembering Ryan White.”

 

If you’d like to help others living with HIV and preserve Ryan’s legacy, the Ryan White CARE Act, then please consider signing this petition to continue funding the CARE Act. Here’s a video I did with help from AIDS Healthcare Foundation to explain just how important the CARE Act is.

Positively Yours,
Shawn

I’ve Been YouTube’d and Called… a “Faygo?”

March 20, 2014

YouTube is known just as much for its hateful Comments as it is for its cute cat videos. So of course, the first Comment on my Win Tosh’s Car video is… well, check it out for yourself.

shawn-is-faygo.jpgfaygo.jpgAt first glance, it’s just a hateful Comment. But upon further investigation, I discovered that the commenter has a dog in the Tosh Contest race…. literally, his entry into the contest is a video of his dog catching a Frisbee as it jumps into a body of water… so, what does this crude Comment really mean?

It means my video is sending chills down the spine of my competition. I’m seen as a threat- thus the attempt at psychological warfare. This guy figures if he can break my spirit, I’ll take down the video and admit defeat.  Seriously, who wouldn’t be offended by being called a b-rate soda?  But I don’t break so easily!  I’m in it to win it and this only fuels my determination.

Gotta run, because now I’m thirsty.

Positively Yours,
Shawn

Trying to Win Daniel Tosh’s (Tosh.O) Car

March 19, 2014

On a recent episode of Tosh.O, Daniel issued a challenge to viewers: prove you are better than he is by doing something incredible. Record it and send it in for a chance to win his car. (A 2011 Subaru Outback with around 25,000 miles on it.)

I can never resist the call of a great challenge as well as the opportunity to upgrade my 2004 Subaru Outback (150,000 miles). So here’s my 30-second bid for the car showcasing a few of my incredible skills.

Hope you enjoy it and that you are doing incredible things today.

Positively Yours,
Shawn

Side Effects- To Change Meds or Not To Change?

March 16, 2014

Overall, I was happy with the results of my latest labwork. My t-cell count was good and my viral load was undetectable.  And since last June, when I started on my paired down daily regimen of Prezista (800 mg) and Norvir (100 mg), I’ve felt pretty good: a lot less of the mental fog I’ve experienced on other meds.

But since June, I’ve had a few rough patches with hemophilia. In late July, I innocently slid into a booth at a restaurant and rammed my side into an exposed beam.  It took about three weeks of treatments to get the bruising to subside. When my hepatitis B viral load spiked after enjoying 30 years of having no signs of hepatitis B problems- my doctors thought the new HIV drug regimen was the culprit. Turns out my mom’s hunch was right: that the blood product treatments, and not my HIV meds, were responsible for the hep B spike.  After a few weeks of no no hemophilia medication, the hepatitis B viral load dissipated.

blood-needle.jpgA couple months later I noticed a strange bruising on the outside of my foot.  I couldn’t recall bumping it, and was surprised when the bruising got worse.  Since I have moderate hemophilia, I usually can handle a moderate amount of bumps without them resulting in treatment. Fortunately, the foot hemorrhage was taken care of easily- one treatment at home and I was good to go.

Since December, I hadn’t had any problems until earlier last week, when I noticed blood in my urine.  Never a good sign.  Again, I treated at home, but contacted my local hemophilia clinic just to be safe. They suspected kidney stones and ran some labs- my clotting levels were normal (for me) and so was my kidney function.  I’d looked up the potential side effects for Prezista, one can be the potential for more bleeding in people with hemophilia…

Erg.

I really don’t want to switch medications.  I like this regimen, but at the same time I don’t want to have to deal with another medical condition because of it.  My initial plan last June was to go on the 800 mg of Prezista and, if it worked, take that down to a 600 mg dose.  If the drug is the reason for this uptick in bleeds, then it stands to reason that less of the drug would mean less of the side effect.

I’m not too worried about giving this idea a shot, since it was part of my game plan to begin with.  Basically, I’d make the switch from 800 to 600 mg, then get some labs done.  If for some reason there’s a noticeable, adverse effect on my t-cell count and viral load, then I’d consider switching to another HIV medication. (If you’re curious about my decade of being on a structured treatment plan of one week on HIV medications followed by one week off, then read my Poz column about it here. It will shed some light on why I go outside of the box when it comes to HIV treatment.)

As is always the case for anyone reading this who is also living with HIV, it’s important to talk to your doctor openly about treatment options and side effects. I’m lucky to have a good relationship with my doctor, and feel very comfortable speaking with him about my concerns.

Positively Yours,
Shawn

Happy Birthday, My Almost Brother

March 6, 2014

I’m not consistent on Facebook- I don’t check in every day, or see updates from people I’m close to.  I don’t post my every brainfart or rehash the latest celebrity gossip.  Often times in real life someone will say something, I’ll look clueless, and they’ll respond with: “Oh, I posted that on Facebook.”  My catchphrase these days has become, “I miss everything on Facebook.”

Part of that is a conscious decision.  I don’t want to be glued to my iPhone.  And I don’t feel guilty if I miss wishing someone a happy birthday, though I do get tickled when mine comes around and there’s a ton of well-wishes.  I do get the appeal of social networking- it was what I built my decision to open up about HIV around… the vastness and immediacy of connecting with friends, and strangers, is a pretty damn cool thing.  If the internet wasn’t around when I decided to talk about HIV in 1996, then things for me would have been a lot different.

Having a past that doesn’t include the internet is a pretty damn cool thing, too.  I’m glad I didn’t have to worry about a cyber-presence in junior high school, or high school.  I’m sure my peers back then would have been less forgiving about missing those birthdays.

Which brings me to an old pal whose birthday is today, something I noticed by chance yesterday while logged into Facebook.  Ryan Almarode.  I met Ryan a couple of years after my HIV diagnosis.  I was 13, he was 12.  According to his Facebook profile, he is celebrating his 73rd birthday today.  In actuality, he’s been gone for almost a year now, having taken his own life…

I have so many coming of age stories and vivid memories of my friendship with Ryan.  We formed our first bands together- he played guitar and I played keyboards.  Along with our friends, we were collectively known as The Demonic Doves.  We never had a gig and seldom had a full band practice.  I remember one Christmas morning, Ryan and I stumbled upon a gas station that was open after a moderate search.  He bought me a hot cocoa and I bought him a cupcake or some kind of sugary sweet treat.

Overall, we were bored out of our minds.  I reminisced about times we shared before.  He said, “In a couple of years, we’re going to look back at right now as the good ol’ days.”  The comment immediately resonated, and that hot cocoa tasted all the sweeter as we plunked quarters into the Mat Mania arcade game.

After I’d disappeared for a few months, in the throes of my first love which ended in devastating fashion, I found myself at home alone.  Bored and depressed.  A knock at the door summoned me from my bedroom.  “Hey man, I’m sorry you got dumped,” Ryan said in an awkward greeting.  Then his eyes met mine, and his face lit up with a huge smile. “But I’m so happy for me!  I thought my summer was going to suck!”  He dragged me out of the house for a Slurpee, and the party was on until we got busted for being drunk teenagers in public a month later.

After some problems at home, Ryan moved in with me and my family for a few months.  My parents were about to sign papers making them his legal guardians, but his family decided against it at the last minute.  Not too long after, Ryan started to party again but I was too scared of getting in trouble again… I mean, my dad was an ABC (Alcoholic Beverage Control) agent.

I made new friends, Ryan was hanging out with old friends.  Though we drifted apart, we always took advantage if the fates reunited us.  I can’t remember ever being around the guy and not sharing a soul laugh- even if it was often at someone else’s expense.  For me, Ryan was always that voice in my head, the hilarious thing I wouldn’t dare to say.  That voice had a mouthpiece in Ryan Almarode.  And he had the charisma to pull it off and not piss people off for too long.

One time in high school, my history teacher was absent.  Since we had a substitute, Ryan figured he’d sit in class with me and goof off, knowing the substitute wouldn’t pick up on the extra student. (He was always right about that kind of shit.)  Our assignment was to write about a prominent figure of the Civil War.  I told him our teacher really loved this general of the South.  Ryan smiled and choose that guy as the subject of his essay.

When he handed me his work at the end of class before we turned in our papers, I couldn’t believe what I read.  It went something like this, “How could he think his untrained army of backwoods rednecks could compete with the well-trained units of the North?”  A full two-pages just tearing down the teacher’s hero in brilliant fashion.  Literally, to this day, one of the funniest things I’ve ever read.  Despite my concerns, Ryan passed the paper in, never to be seen in that classroom again.  I still smile at the thought of how the teacher must have reacted to Ryan’s well-constructed and cutting words.

During my teenage years, I just wanted to ignore HIV.  I wanted to be as normal as possible.  Mark Roys, TJ Overton and Ryan Almarode helped to make that happen.  Much in the same way Jared Lambert and Michael Robertshaw helped me have a normal childhood with hemophilia.

But with HIV, the stakes were so much higher.  And in my friendship with Ryan and our shared sense of humor, he showed me that normal is overrated.  And reminded me often that I wasn’t normal: a fact that had nothing to do with my HIV status.

I’ll never forget you, Ryan.  Happy birthday, old buddy.  You don’t look a day over 40.

Positively Yours,
Shawn

Why I Don’t Have Dallas Buyers Remorse

March 3, 2014

This year, The Academy Awards were once again touched by the hand of the AIDS epidemic.  In 2013, AIDS activists rejoiced when How To Survive a Plague was nominated for Best Documentary.  A decade before, Nicole Kidman won for Best Actress in 2003′s The Hours… and a decade before that, Tom Hanks got the nod for Best Actor in Philadelphia in what was, before this past weekend, AIDS’ greatest triumph at Hollywood’s biggest night of the year.

But a funny thing happened on the way to Oscar night…

When both Matthew McConaughey and Jared Leto won Best Actor and Best Supporting Actor at the Golden Globes two months ago, each actors’ acceptance speech failed to mention AIDS.  Much like the trailer for the movie, there wasn’t mention of the medical condition that figures so prominently in the movie’s plot.  And, as an AIDS educator, I get it- the word “AIDS” scares a lot of people. Get them in the theater and entertain/enlighten them by any means necessary.

In regard to the AIDS community’s outrage over the Golden Globes speeches and the omission of our struggle… I really didn’t get it.  I don’t expect actors to be activists.  They play roles, do the job and get in and out of character and on to the next role.

I saw Dallas Buyers Club in a theater, which was more than I expected after hearing about the movie months before its release.  I figured it would be an indie flick that wouldn’t find its way to my hometown theater and that I’d catch it half-a-year later on Netflix.  The fact that it got so much buzz after its release made me happy- friends of mine were going to see it on their own without me (the “friend with AIDS”) nudging them.

So last night, both actors won again on Oscar night.

Jared Leto mentioned the millions of people who died from AIDS at the tale-end of his acceptance speech, certainly making amends with a portion of the AIDS community… but Matthew McConaughey, the biggest winner, remained mum on HIV/AIDS.  He also failed to mention the name of the man whose life he interpreted for the film.  Matthew did mention God, and a vision of his father doing a little victory dance in Heaven for him.  Which made me wonder: if pressed, could Matthew picture Ron Woodroof in that vision of Heaven, sharing that tender moment of glory with dad?

Who knows.  I don’t know Matthew personally.  Perhaps he does think Ron is up there, too.  And perhaps he didn’t mention AIDS in his speeches for fear of offending anyone with a clumsy comment about HIV/AIDS? He has a famously loose style- so maybe we should be thanking him instead of ridiculing him for his choice of words…

I, for one, am not mad at McConaughey.  He rescued a dead script from obscurity and breathed life into the performance.  An actor mentioning AIDS out of obligation at an award’s ceremony might give us, those living with the virus, a good feeling inside.  But I believe it does very little to educate those in the dark or get them truly interested in the cause.  Where an actor has true strength is in the artistry of their craft- and in choosing the role of someone living with AIDS, McConaughey took a risk and it paid off for him professionally.  He did his job.

So kudos to Matthew and Jared for going out on a limb and attaching themselves to Dallas Buyers Club.  Just because they portrayed people living with AIDS, I don’t expected either of them to emerge from their roles as, say, an activist like Peter Staley of How To Survive a Plague.  In fact, after the Golden Globes speech fiasco, Peter himself said: “I’m just happy Hollywood has made an AIDS film again.  The crisis is far from over, so we still need reminding.  And I hope Matthew McConaughey wins an Oscar.”

Hear, hear.

Positively Yours,
Shawn

Labtest Contest X: Win Body Counts By Sean Strub

February 21, 2014

BE SURE TO VOTE AT POZ.COM ON SHAWN’S BLOG THERE! HERE!
labtestcontest-logo.jpg

The Labtest Contest is back! And the grand prize has never been better- guess closest to my t-cell count and win a signed copy of Sean Strub’s incredible new book, Body Counts! The rules are posted below… be sure to follow them and good luck!

But before we get to the rules, I need to inform you of a slight change. For the first time ever, I will be competing in the contest. The prize is just that good. Sure, I already have my own copy of Body Counts, which I adore, but it isn’t signed.  Think of it as an extra challenge, or an AIDS-y version of Win Ben Stein’s Money…

labteststrubtest.jpgThe competition will undoubtedly be stiff. And I’m not guaranteed a win by any means. In fact, my own doctor, Greg, is venturing a guess for the first time, too.  To make sure my guess and my doctor’s are seen, I’m going to dramatically increase the font size.

 

Shawn’s Guess: 422
Shawn’s Doctor’s Guess: 670


Previous Champions…
March-July 2010: Charles Oliff (guess: 567 actual count: 565)
July-December 2010: Aimee Lee (guess: 516 actual: 511)

December 2010- March 2011: “Satan” (guess: 666 actual: 662)
March-July 2011:
Sharon Paul (guess:
520 actual: 508)
August-January 2012:
Justin Starkenburg (guess: 570 actual count: 579)
February- June: Bob Geise (guess: 595 actual count: 590)
July-September:
Sahara Frog (guess: 515 actual count: 512)
September-January 2014: Scott Anderson (guess: 620 actual count: 620)
February-October: Mary (guess: actual count:585 actual count: 583)
NOVEMBER RESULTS: 538 (No Contest)

Official Rules

1. You have to post your guess (between 400 and 700 t-cells) on my Poz blog Comments section

2. Relatives are allowed to guess! Bribes accepted!

3. Closest guess wins- if it’s a tie, the closest guess that DID NOT go over the actual count wins.

4. One vote/guess per person. Must have a valid email address.

5. Deadline is Friday, February 28, 2014 12:01 am EST

 

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

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