National ADAP Call-In Day
June 28, 2010
Thanks to the tireless advocacy of Dab Garner, I am aware of more than the pain of losing fake money playing Texas Hold ‘Em on Facebook. Today is National ADAP Call-In Day, so it’s important that will all take part and make our voices heard.
Read Dab’s post from Facebook below and consider joining us by placing a simple phone call.
Positively Yours,
Shawn
(Thanks, Dab!)
Demand that President Obama Address the ADAP Crisis
AIDS Drug Assistance Programs are critical in providing medications to people living with HIV/AIDS who have no other access. Unfortunately, many state ADAPs have been forced to cut services by reducing eligibility criteria, changing formularies, and closing enrollment. Over 1,596 individuals in ten states are on waiting lists to receive their life-saving and life-sustaining medications through this program. Without immediate additional funding the situation is going to get much worse. With National HIV Testing Day just behind us, we need to remind the Administration that getting people tested is not enough. Treatment must also be available. We need your help to ensure that the Obama Administration takes action to help those in need!
We know you’ve called and emailed, but we need your help AGAIN!
How you can help?
Call the White House at 202-456-1111 and leave the following message:My name is ___________ and I am calling today because President Obama must address the current crisis in AIDS Drug Assistance Programs. This past weekend was National HIV Testing Day. We know that knowledge of ADAP waiting lists and other access restrictions can keep people from being tested. For many people living with HIV/AIDS these programs are the only consistent access they have to life-saving medications. However, over 1,596 HIV-positive individuals are on waiting lists to access the programs. Relief must be provided so that ADAP clients can receive their medications and additional states don’t find themselves in a similar situation.
Watch, Friend and Follow me on:
YouTube, Facebook and Twitter
Website: ShawnandGwenn.com Also check out the lovely Gwenn’s Fashion/Coffee Blog
Like what you’ve read? Then buy me an iced mocha or check out my new CD: Synthetic Division, A Symptom of Life, which is now on iTunes!
SHARE THE BLOG. NOT THE VIRUS.
National HIV Testing (My Patience) Day
June 25, 2010
Sunday is National HIV Testing Day. So get tested. Know your status. I know mine. If you don’t know yours it means I am a better person than you because I know my status. Assume you’re negative? Well, I’m still better than you because I know I’m positive.
And, as a result, I know what I need to do to protect my wife partner, Gwenn.
Speaking of, yesterday we had to pleasure of speaking at a Planned Parenthood summer workshop for teenagers in the community. It was a quaint group of about 8 people, and when we arrived an educator from AIDS Services Group was explaining in graphic detail how to use a condom properly, complete with a fake penis and a fake vagina. She also ran through an example of why lube is important by having the group make a fist, then try to insert a finger. After lubing up the finger and area by the pinky on the fisted hand- voila!- the finger entered with ease. “Score!” One teenager yelled. I felt like a soccer fan watching the World Cup.
“Goooooooal!”
It was very inspiring to see Planned Parenthood taking an interest in giving area teenagers the information they need to protect themselves, and then teaching them how to educate their peers as well. After the lube was washed off their hands and everyone had lunch, Gwenn and I discussed how we met, got involved in HIV prevention… I talked about my experiences as someone living with HIV, particularly my own teen experience of being curious about sex and trying to manage that with my HIV status. Then we explained how we make our relationship work in terms of a healthy sex life. One of the questions we got was: “What about the “M” word?”
“Huh?”
“Marriage?”
It wasn’t asked with judgment, just out of curiosity. Another participant chided, “Don’t you see the rings?!” Then the girl looked closer, before exclaiming. “You are married? But you’re so… cool!” It was a heartening moment, and I am very thankful that young folks can still relate to me and not hold my advancing age or wedding ring against me.
The workshop took place at a church, which was kind of cool. But in my ideal world every public school in the United States would be putting on these kinds of demonstrations, having these kinds of open discussions about sex. God knows parents aren’t doing this at home, and the vast majority of teenagers will learn through trial and error. And some will come out of their experiences luckier than others and sans a baby or a lifelong sexually transmitted infection. I gotta say, after fourteen years of being public with my status, and writing and speaking about HIV prevention issues, I’m starting to lose my patience with the lack of comprehensive sex education for our nation’s youth.
So, as another HIV Testing Day nears, we all have to think about what we need to do as a community to insure that those tests come back negative, that people who walk into a testing facility are confident that they did everything in their power to protect themselves.
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
Like what you’ve read? Then buy me an iced mocha or check out my new CD: Synthetic Division, A Symptom of Life, which is now on iTunes!
SHARE THE BLOG. NOT THE VIRUS.
The Kings of Belmont at Fridays After Five
June 24, 2010
This Friday The Kings of Belmont are playing at Fridays After Five, Charlottesville’s weekly summer groovedown at the Pavilion on the downtown mall. I got the inside info from Catherine, one of my favorite Decker’s Daily baristas.
So, for lovers of local, homegrown bands that jam it out like nobody’s business, definitely check these guys out.
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
Like what you’ve read? Then buy me an iced mocha or check out my new CD:
Synthetic Division, A Symptom of Life, which is now on iTunes!
SHARE THE BLOG. NOT THE VIRUS.
New Executive Director at AIDS Services Group
June 23, 2010
Got a press release (posted below) recently regarding my local AIDS Service Organization- AIDS Services Group- and their new executive director, Peter DeMartino. This is for those who live in the Charlottesville, Virginia area and rely on ASG for their positoid needs.
In recent years, I haven’t been too involved with the organization, but I’ve always had a special place in my heart for ASG because it was where my doctor first directed me when I decided to speak out about my HIV positive status back in 1996. The first positoids I met face-to-face (in a highly confidential fashion, per support group rules) were via ASG, and when Gwenn called the organization a few years later looking for someone to interview with HIV, they fatefully put us in touch with one another; a gesture I am eternally grateful for and one that forever changed the course of my life in so many ways.
Though I’ve been out of the loop with ASG, I hope to work more closely with them in the coming weeks, months and hopefully years. As for the new Executive Director- welcome to Charlottesville, Peter!
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
Like what you’ve read? Then buy me an iced mocha or check out my new CD: Synthetic Division, A Symptom of Life, which is now on iTunes!
SHARE THE BLOG. NOT THE VIRUS.
_______________________________________________________________
Contact:
Cynthia Neff
President – Board of Directors
AIDS/HIV Services Group
434.825.1622 tel.
434.979.8734 fax
Executive Director Announcement
Charlottesville, Virginia, June 12, 2010 – AIDS/HIV Services Group (ASG) is proud to introduce our new Executive Director, Peter DeMartino, PhD. Mr. DeMartino comes to ASG from Palm Springs, CA where he has worked for the Desert AIDS Project (DAP) in program development and quality improvement. His work at DAP involved community organizing and needs assessment, public policy development and public and foundation funding strategies. Mr. DeMartino has extensive experience working with HIV and AIDS including sitting on the Persons Living with HIV/AIDS (PLWHA) Caucus for the Communities Advocating Emergency AIDS Relief (CAEAR) Coalition. He has served as a member of the California State Office of AIDS Community Planning Group (CPG) and also as a grant reviewer for the Center for Disease Control and Prevention (CDC) HIV prevention grants. Mr. DeMartino has been an active agent in the recent reauthorizations of the Federal Ryan White Legislation. Mr. DeMartino holds a doctorate from the University of Chicago and brings experience and expertise in advocacy, programming, and support for persons at risk for and living with HIV and AIDS. He has presented nationally on program development, healthcare advocacy, and Positive leadership.
ASG has served persons living with HIV and AIDS in the Charlottesville Metropolitan region for almost twenty-five years by providing life-supporting services as well as programming for our community aimed at preventing new HIV infections in our region and ensuring access to care for persons living with HIV. Together with our community, we are committed to the cause of ending the spread of HIV in our city, our state, and our country. On a regional, state, and national level HIV continues to disproportionately impact gay men and persons of color. We are committed to ending health disparities as evidenced by increasing HIV infection rates. With over one million dollars in federal and state grants, ASG offers programs that assist those seeking to remain HIV negative by providing prevention services, including free and confidential rapid HIV testing. We also provide medical case management and supportive services to over 140 persons living with HIV or AIDS. Some of these services include housing assistance, access to primary medical care, supportive services such as substance abuse treatment and transportation.
ASG looks forward to continuing our work in our community under new leadership with a renewed purpose. As we look towards the twenty-fifth anniversary of the organization, ASG is excited to reinvigorate past partnerships and together with our community continue the fight to end this chronic and social disease.
Contact information for Mr. DeMartino beginning June 15, 2010 will be:
434.979.7714 x226
Fatigue and HIV
June 23, 2010
A recent study on fatigue and HIV places a lot of focus on depression and anxiety being causes, thus minimizing the assumed cause and effect of HIV on the body as well as the side effect of HIV medications. For me, fatigue has been a two decade battle. Often, I wave the white flag by placing my head firmly on my white pillow case for a much-needed nap.
I was probably infected around the age of 8. I got shingles before my diagnosis at 11, and had a few health problems because of my weakened immune system. I don’t remember being tired or fatigued until after I was told I was HIV positive and started to face the realities of living with HIV socially, as well as dealing with the heavy thoughts of confronting my own mortality.
When I started speaking about HIV at 20, I explained away my shoddy attendance record in junior high and high school by telling myself I just skipped out because I could. Because my parents or the attendance police at school were powerless to stand in my way by playing the “too sick for school card”. But, in retrospect, a lot of those days I was just too tired to get out of bed; a lot of those mornings, it’s safe to say I was depressed, and the thought of getting and going to school to pretend to be normal placed a distant second to being able to sleep in, wake in a house all by myself and have a good afternoon tug in the privacy of my own home.
As a guy in my mid-thirties, I look back and notice that, as I was starting to come to terms with life as a positoid even though I hadn’t gone public- around the age of 18, there was a physical fatigue that had less to do with the emotional/psychological side of things. For instance, instead of going to see a band I loved in concert, I opted to stay back. Late night drives to a donut shop held little appeal, and winter-time sledding only conjured up the thought of walking back up the hill, and not the joy of sliding down.
I doubt that was just the natural effects of getting older, since I was 19 at the time. And at 19, I’d probably had an untreated virus- HIV- in my system for at least a decade.
Today, I blame my meds on my recurring bouts of fatigue. But that’s not fair to the virus itself, which necessitates the need for a constant defense system that includes not only pills, but a stress-free lifestyle that includes a decent amount of rest. When I did my recent tour with Synthetic Division, I actually Mapquested the whole route, keeping how many hours of sleep I’d get each night at the top of the priorities list.
I look back on those early days of fatigue, and I acknowledge now that I had a rough first year after my diagnosis. I’m proud that with each year, I got a little more comfortable with the fact that I’d live the rest of my life with HIV. The fatigue continued to dog me, as it does to this day, and I’m proud that I recognize my need for rest and balance it with my desire to be a good, active partner in my relationship (from holding conversations to holding hands) and a contributing member of society.
The way I deal with fatigue now? I don’t beat myself up over it. I rest when I need to, and I make a proactive decision to test my stamina when hours become days, and days turn into weeks of sloth. Psychologically, I’m as comfortable as I can be with the fact that I’m HIV positive; the emotional exhaustion surrounding my status comes more from the fact that I’m an HIV educator. And even with the stamina of a World Cup soccer player I’d still be unable to do everything I want to in terms of raising awareness about this epidemic.
Plus, over the years, I’ve learned to love the nap, even if it is required a mere three hours after a full night’s sleep. I don’t get embarrassed, I don’t let it hurt my pride, and nothing feels better than having a partner who sends me off to sleep with a smile.
I wonder how many of those early, post-diagnosis naps were filled with dreams of one day awakening to this reality.
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
Like what you’ve read? Then buy me an iced mocha or check out my new CD: Synthetic Division, A Symptom of Life, which is now on iTunes!
SHARE THE BLOG. NOT THE VIRUS.
N’tnl Mag Looking For Sero-Disco (Poz/Neg) Couple
June 22, 2010
I got an email from a reporter who is looking for a serodiscordant couple to interview for a national magazine. If you don’t know what a serodiscordant couple is, then you probably aren’t the right person for this story.
Basically, a serodiscordant- or “serodiverse”- couple is one like me and Gwenn, where one partner is HIV positive and the other is HIV negative. But in terms of this particular story, the reporter has no use for us. And here’s why.
They are looking for a serodiscordant male/female couple that is currently:
- trying to conceive naturally because…
- can’t afford sperm-washing or
- lives too far away from a clinic willing to perform procedure
If you are going through this, and want to give voice to the experience, contact me and I’ll pass your information along. Just send me an email at: shawn at mypetvirus dot com The reporter explained in her message to me that she wants to convey the limited options for sero-couples who aren’t wealthy yet still want to start a family.
For anyone wondering why I don’t want to hop on the baby-making train? I’m am entirely unwilling to share my fudgesicles with anyone who isn’t physically strong enough to tear that treat from my cold, eager hand.
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
Like what you’ve read? Then buy me an iced mocha or check out my new CD: Synthetic Division, A Symptom of Life, which is now on iTunes!
SHARE THE BLOG. NOT THE VIRUS.
Follow Me on Twitter, Here’s Why
June 21, 2010
shawndecker Scary moment w/ fudgesicle- stuck to my upper lip. Luckily @gwennbarringer was close by w/ water. Didn’t lose any skin.
Follow-up tweet: Pride? That’s another story.
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
Like what you’ve read? Then buy me an iced mocha or check out my new CD: Synthetic Division, A Symptom of Life, which is now on iTunes!
SHARE THE BLOG. NOT THE VIRUS.
The Harry Potter Alliance
June 20, 2010
Are you a fan of Harry Potter? Well, you don’t have to be to be a fan of the Harry Potter Alliance. And what exactly is that? Think the magic of the J.K. Rowling series, only applied to the real life issues we often hear about but feel powerless to do anything about. (Global warming, LGBT issues, etc)
The HPA has a great record of accomplish since forming in December of 2007. Haiti relief, providing books to children in impoverished communities, standing up to anti-gay ballot measures and ideals. Here’s a video on what they do. If you’re a reader, you can visit their site and read about their magical ways.
Right now, the Harry Potter Alliance has the potential to be awarded $250,000 via the Chase Community Giving Challenge. They are in second place, and need your vote. So if you have a moment, cast a spell with the click of your keyboard.
Oh oh, it’s magic.
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
Like what you’ve read? Then buy me an iced mocha or check out my new CD:
Synthetic Division, A Symptom of Life, which is now
on iTunes!
SHARE THE BLOG. NOT THE VIRUS.
life in photos
I am frightened by ceilings. A terrible phobia to have.
Today's assortment of treats: tea for Gwenn, a mocha for me and a cookie to share.
My buddy Sharanya preparing my mocha with just an extra dash of love.
Hanging on wall in our guest bedroom. Couldn't agree more!
Speaking About Sexual Health
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.
Check out Shawn's music and buy his book, My Pet Virus, which is now available on Kindle!
It will be the funniest book you've ever read about someone having AIDS... guaranteed!