30 Years to a Functional Cure?

April 29, 2015

I followed an internet wormhole to an article that suggested a functional cure could be up to 30 years away. At or least that was the thought of some know-it-all scientist who painstakingly analyzed all of the recent data on emerging treatment options… but what does that poindexter know?

If the good fates allow, that would put me at 69 years old. I’d like to be able-bodied enough to pull off a 69′er with Gwenn when I’m functionally cured, because I’m looking to put the “FUN” in “functionally cured”. Plus, my goal is to bookend my life with some HIV-free years. And I’d like that to happen before my golden years.

But, those thoughts aside, I am living my dream right now. I made it to adulthood. I’m staring down 40 this summer and think my 40s will be my best decade yet, and I’m certain that there will be some great advances in treatment over the next decade. I’m no scientist, but that’s what my gut tells me- the same gut that says grilled-cheese sandwiches are tasty.

And when your gut is that spot on, who needs the opinion of a scientist?

Positively Yours,
Shawn

MTV’s RE:DEFINE Rocks Dallas and HIV

April 13, 2015

Full dislosure- I’m a big mark for the MTV Staying Alive Foundation. They fund grants worldwide to provide young people with the tools and resources necessary to implement HIV prevention plans in their communities. You can learn more about them here.

The Staying Alive Foundation’s continued existence is dependent on public funding, and this past weekend, along with their partners at The Goss-Michael Foundation, they raised over $2 million at the annual RE:DEFINE fundraiser in Dallas. Georgia Arnold, executive director, shared some photos on her Instagram account (which I cobbled together below!)… enjoy!

redefine-dallas-mtvstayingalive.JPG

Big thanks to everyone who helped make the event a success, including artist Brian Kokoska, whose work was available in the art auction. And Julie Allen, who conceived the idea for RE:DEFINE.

Up next on MTV Staying Alive’s fundraising calendar? Found in London on May 14, with performances by Tinie Tempah and Tallia Storm. 

Positively Yours,
Shawn

Take the GLAAD Celibacy Challenge

February 19, 2015

shawngwenncelibacy.jpg
Gwenn and I are taking the Celibacy Challenge in solidarity with our gay, blood-donating friends.
(photo by Christina Fleming)


Would you give up sex for one year to donate blood?

When the FDA lifted the the gay blood ban, that was their caveat. GLAAD, with the help of Alan Cumming, brilliantly lampooned the decision to include the celibacy clause and offer some advice to any gay man who wants to donate blood but is rattled at the thought of an extended dry spell…

Thanks to Nina Martinez, my positoid pal, for tweeting about this video. Like me, she was infected with HIV early in life via tainted blood products. And, like me, she feels that risk assessment for blood donations should be based on behaviors, not sexual orientation. If you agree with us and enjoyed the video, then please sign the Celibacy Challenge petition.

Positively Yours,

Shawn

Got My Brain Checked Out

February 6, 2015

A few years ago I was scheduled to get the inner workings of my brain checked out. I’m not sure what lead to the scheduling of the appointment, perhaps I confided in my doctor that I felt particularly forgetful or just not with it mentally. What I do remember is that, a couple of days before the appointment, I cancelled.

Because I was scared as hell of what the results would be.

Instead of running those tests, I placed the blame on my HIV meds. Surely my mental fog was the result of those little buggers, right? So I tried a couple of different combinations… but, as the size, shape and color of the pills changed, the mental fog remained the same. As I thought about my options, there was a glimmer of hope that my brain wasn’t atrophied from three decades of living with HIV…

The hope was in the form of Adderall.

Over the last several years, on occasion, I’d taken adderall. But not prescribed. If I had a huge writing task, I’d obtain it, but just for a few days use. I slept like a baby at night, I didn’t feel hopped up or high. I felt, well, human. Like I could carry on a 10 minute conversation with a friend and not feel like I had to rush home for an hour-long nap afterwards.

I spoke openly with my HIV doc about my concerns, and that glimmer of hope. An appointment with a psychiatrist was made, and after an evaluation it was determined that I had ADD. Adderall was prescribed and I was monitored with monthly appointments. This was a year and a half ago, and my quality of life has improved dramatically since then. Not to mention that my worries of mental decay were alleviated… temporarily, at least.

A couple of months ago my insurance company took notice of my Adderall prescription. They must have said, “What a minute- Mr. Hemophilia and AIDS is on what???” As part of their standard practice they required further tests because, you know, what do doctors know that insurance companies don’t? And I’m sure their accountants placed my well-being above all other priorities.

So, in a full circle moment, an appointment was made to determine my cognitive abilities. More puzzles and conversation than taping wires to my body and X-raying my brain. But still, those nervous feelings came back again. Was my mental clarity an adderall-created mirage? The kind of false bravado that convinces a beer-drinking 120-pound man to find the biggest guy in the bar to pick a fight with?

Though my fear was plausible, this time, I didn’t cancel. Like my ADD diagnosis, I just wanted to know the truth about how well my mind is working. I didn’t take adderall for a couple of days before the testing. That morning arrive, I woke up early, did the three hours of tests and then waited a couple of weeks for the results…

The ADD was confirmed by the testing. Admittedly, I did better in some areas than others- but, ultimately, any fears of impaired cognitive abilities as a result of HIV were laid to rest. And, really, I couldn’t have asked for better results.

Positively Yours,
Shawn

Limping Into 2015, Literally

January 24, 2015

tigersizedcat.JPG

“To survive in this world, sometimes you must have the eye of the over-sized domesticated cat.” – me

My last blog post was on December 4th- I was ending the year of 2014 in arguably the prime of my life: confidant and wearing a moustache for the first time, standing naked in a shower raising money for my friends at the MTV Staying Alive Foundation…

And then it happened. The December Surprise.

It’s seems that, every December of every year, there’s a medical surprise of some sort. Sometimes big, sometimes small. But always in December. This year’s surprise came in the form of a cough, on the evening of Sunday, December 13th. It is now January, 24th and the cough is still here. It’s not serious or deadly, just lingering. Rumors of the cough’s force had been spreading throughout my community since early Fall, so my immune system did it’s best warding it off until December when, apparently, my immune system decides to take some time off to celebrate every religion’s holiday season.

Another aspect of the cold winters of Virginia is my left ankle, which has been ravaged due to years of slight bleeding. I swear the cold weather severely aggravates the physical handicap. The cartilage in my left ankle is pretty much gone, leaving bone to bone friction… I know that sounds like the male equivalent of scissoring, and it is just as physically awkward. Most times I get around fine, but when my ankle starts to painin’ me, boy does it start to painin’ me.

On the bright side, I have acquired a Handicap Parking Pass. One that I promise not to abuse in the times when I can walk fine. In recent years, traveling by plane has become pretty unbearable due to the ankle- after 3 hours flights of being crammed in Coach, my ankle lets me know it isn’t happy. Starting a few years ago, there have been times when it’s been so bad that Gwenn has had to get a wheelchair and push me through the terminal. The Pass will certainly help on those trips, allowing us to park closer to the Terminal and also closer to where we are speaking when we educate on sprawling college campuses.

Though this blog may make my life out to seem like a heaping pile of shit, I’m actually quite happy. And even optimistic about the year ahead. The ankle is my spirit bone for 2015: take a long-standing problem and apply a solution to it. In about ten years time, science may be able to correct my ankle by regrowing cartilage in the joint. I look forward to resuming my legendary League bowling career in my 50s and joining my brother, father and grandfather as a Decker who has bowled a perfect 300 game in league bowling.

Till then? I’ll do what I’ve always done. I will walk, sometimes limp, forward towards more adventures. I turn 40 this year and I have a feeling it will be the best decade yet. I’m content with who I am, what I’ve done and am eagerly anticipating the next growth spurt in my life.

But that’s long-term. For now, I’ll settle for no coughing.

Positively Yours,
Shawn

My Sexy Freddie Mercury Shower Pic

December 1, 2014

weareallqueensmall.jpg

gwennisclean.JPGThe Freddie Mercury moustache has arrived in style on World AIDS Day thanks to Jack Mackenroth’s #weareALLclean social media campaign/fundraiser for Housing Works. It’s been so much fun to participate in and donate to this as I prepare to call on friends to donate to my fundraising campaign for the MTV Staying Alive Foundation later this week. (Details below.)

So many campaigns and so little time each year to have eyes and hearts on this issue. I’m so thankful to be here and to be a part of a community that is fighting back against this epidemic in wonderful ways that change lives for the better. I hope you all are having a happy and safe World AIDS Day.

We Will Rock AIDS,
Shawn

UPDATE: Gwenn took a shower selfie this morning to join in the fun! So thankful to have such a loving partner.

———————————————

 

Shawn is sporting a Freddie Mercury moustache to raise money for the MTV Staying Alive Foundation. Donations are doubled starting at 5 am EST on Thursday, December 4 and through Saturday, December 6 (Click to donate!). Also, for every $1 donated Durex is donating 5 condoms to HIV prevention efforts for MTV Staying Alive.)

We Are Clean… AND the Champions (of the World)

November 28, 2014

Shawn is growing a Freddie Mercury moustache to raise money for the MTV Staying Alive Foundation. Donations are doubled starting at 5 am EST on Thursday, December 4 and through Saturday, December 6(Click to donate!). Also, for every $1 donated Durex is donating 5 condoms to HIV prevention efforts for MTV Staying Alive.)

“Are you ready, hey, are you ready for this?
Are you hanging on the edge of your seat?”

“Another One Bites the Dust” – Queen

My facial hair is complying- the power of Freddie Mercury’s moustache is taking hold as World AIDS Day approaches, now less than one week away. I was wondering just how I’d reveal such an iconic moustache… and then I read about Jack Mackenroth and (the app) Moovz’s #weareALLclean campaign to benefit Housing Works.

It’s all about the word “clean” and how it’s used to imply that anyone with HIV- or any other STI, is somehow dirty by proxy.

So yes, I’d love for you to support me in my World AIDS Day campaign by donating money on December 4, 5 and 6, (starting at 5 am EST on December 4th!!!) when donation amounts are doubled. But it would also be great to get as many people as possible to join in on the #weareALLclean movement on World AIDS Day. Use the hashtag- you don’t have to post a shower selfie, either, if you aren’t quite as bold as, say, Freddie Mercury, then don’t worry: you can vocalize your support for the community and reinforce the idea that a positive test result doesn’t mean someone is no longer sexually or emotionally attractive.

We are HIV positive. We are clean. And we are the champions of the world.

Positively Yours,
Shawn

Shawn is growing a Freddie Mercury moustache to raise money for the MTV Staying Alive Foundation. Donations are doubled starting at 5 am EST on Thursday, December 4 and through Saturday, December 6(Click to donate!). Also, for every $1 donated Durex is donating 5 condoms to HIV prevention efforts for MTV Staying Alive.)

The Power of a Freddie Mercury Moustache

November 20, 2014

 shawnbiggiveFBprofilepic.jpg I’m in the process of doing something I’ve never done before… I’m growing a Freddie Mercury moustache.

I’m revealing the moustache on World AIDS Day, December 1. Then, with your help we will, WE WILL rock AIDS together for the MTV Staying Alive Foundation. Because on December 4, 5 and 6 donations to this organization are doubled! So a generous donation of $10 will count as $20. (Don’t worry, I’m not going to insult you by giving any more examples.)

I’m proud to be a board member for MTV Staying Alive- they support incredible work around the world and make a true difference in peoples’ lives by funding community members to address the specific HIV needs where they live. And a little money goes a long way.

shawnfreddiegrowth.jpg
I’ll have details on how you can help very soon, and will be posting growth progress. Right now it’s a bit patchy, dawg. But with your good vibes I’m sure I’ll be able to grow a stache that Freddie would endorse. And with your help, we will grow a moustache that harnesses the same kind of power that Freddie used to rock audiences.

We Are the Champions,
Shawn

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