20-Year High School Reunion
October 23, 2013
A week and a half ago I attended my 20-Year High School Reunion. In the months leading up, I had the same feeling most people do in regard to these kinds of affairs: did I really want to go? Would it be more fun than awkward?
Thankfully, one of my longtime friends whom I’ve stayed in contact with was part of the organizing team. I agreed, knowing he would be there. As the event drew nearer, any fears of the event being a negative thing floated away. I started to get excited about the prospect of seeing classmates who wandered the halls alongside me for so many years, each one of them coming of age at roughly the same rate as I did.
Another plus is that I only live about 30 miles away from my hometown. When classmates from Denmark, Columbia, Germany and Poland started RSVPing, I thought it would be pretty lame if I didn’t make the “effort” to show up. Knowing how I felt initially about the reunion, I wrote to a few friends who hadn’t responded yet on the Facebook Event page, hoping they’d come out, too.
And when the night arrived, I was so thankful that I’d been open to it.
After about the third conversation with classmates I hadn’t spoken to in 20 years, I suddenly felt like I’d stepped into a time machine. In re-connecting with familiar and friendly faces from the past, I in turn reconnected with my 18-year old self. That guy who graduated with absolutely no plan of what to do with himself from that point on.
Since Gwenn and I have been so public with our relationship, many classmates have been able to keep tabs on me at a distance. I received so many kind words for the HIV education we do- even spouses of classmates whom I’d never met before heaped praises on me for My Pet Virus. I know that most of my classmates knew I was HIV positive back in high school- even though I never talked about it then- and it was great to be able to finally speak openly with them about it.
After the reunion, Gwenn joked with me about being the darling of my class, which is a dead-on assessment. The odds of me making it to a 20-year reunion were quite long, and when I was diagnosed with HIV in the 6th grade, my mom’s pie in the sky goal was getting me to high school graduation.
When the reunion neared, I was asked to make a “welcome” speech to the class. I kept it quick and casual, but I made a point to mention those who could not make it- we’ve lost a few classmates along the way, with varying degrees of tragedy. Keeping their spirit in mind during the celebrations was important because, even though they weren’t there that night physically, they too walked those very same footsteps as we did.
As for the next reunion, whether it’s in ten or twenty years, I plan to be around. And, hopefully by then, I’ll be walking through the door without HIV in tow.
Surviving Bleeding Disorders and HIV
October 4, 2013
This month I wrote an article for Poz.com about what it was like for three young men, who were born in the 1980s with a bleeding disorder. Mark tested positive at an early age and wasn’t expected to survive childhood- he is now the proud father of twins. Nick was born just before blood products were made safe- he shares a harrowing near-death experience, while Justin was born just after blood products were made safe; he evaded HIV, but had to calm his mother down when she found out he was gay.
Thanks to all three for being so candid!
Hope everyone has a wonderful weekend.
False HIV Rumors About Miley Cyrus
October 4, 2013
Wednesday night a group of bottomfeeders from 4chan launched a cowardly, anonymous online campaign entitled “Cure For Miley”. The goal? Presumably it’s either to trick people into thinking the singer is HIV positive- Oh my God, how awful for her reputation, what an insult (dripping sarcasm)- or to shame her overtly sexual public performances.
Now, I’m no Miley fan. And yes, I could stand to see a little less of her tongue. Though, if someone had to be forced to never reveal their mouthsnake again, I’d banish Gene Simmons before I’d exile Miley’s flavor saver. Still, that’s not the story here- what pisses me off most about this campaign is that it’s underlying theme is: what could be more embarrassing and shameful than HIV?
Well, I don’t think HIV is embarrassing- or shameful. I’ve been living with it for most of my life. It’s a virus. A pesky one that can make life harder than it needs to be sometimes. But I do my best to stay healthy while dealing with the distraction of having to educate and enlighten people to the facts about HIV, while dispelling the rumors.
What is shameful and embarrassing? Posting anonymously online in an attempt to discredit, embarrass or shame someone else. Any jackass with no dignity or grace can do this. Look at YouTube Comments, do you think those people are happy with their lives? The loathsome losers who started “Cure For Miley” think they’ve done something great- all they’ve done is make stupid people laugh, and make some people with HIV roll their eyes and hang their heads.
Like Miley? Hate Miley? It doesn’t matter. At least she’s out there, doing her thing, taking all of the criticism that comes when you reach the top of that chosen profession. Maybe actual names and faces will be attributed to this lame campaign, maybe not. Either way, I for one am not letting these idiots off the hook.My message to them and the rest of the ever-growing population of cowards who hide behind their screen names is very simple.
Die soon and make the world a better place.
GREAT Results on Hepatitis B Labwork
October 2, 2013
This means I won’t have to add Truvada to my current regimen of Prezista/Norvir. It also means that my mom’s hunch was right- the spike in my hepatitis B viral load must have been related to all of the blood product treatments I received in August. My doctor was taken aback by the results, and I was mentally prepared for the worst… there’s been so much bad news lately, today was desperately needed.
So, cheers to turning points. This is most certainly one for me. If you’re out there and struggling with medical shit- my heart goes out to you. And godspeed on reaching your own turning point…. hang in there.
B Patient (Posted September 25)
October 2, 2013
Forgot to cross post this entry from last week…
September 25, 2013
In August I had a pretty hefty dose of concentrated blood plasma to treat a hemorrhage. My childhood was filled with these kinds of episodes, but not since I was a kid had I been exposed to such a hefty dose of other peoples’ clotting factor.
When I told my mom about my spike in hepatitis B viral load, she said that back in the day my liver enzymes would go through the roof after any serious hemophilia-related activity. I shared this information with my hematologist, who acknowledged the likelihood of my mom’s enzymes theory but didn’t think that applied to hepatitis B viral load results.
This week I went in for another round of labs to see what exactly is happening with this hepatitis B viral load business. My doctor okay’d this wait-and-see plan, but told me not to expect the B to go down on its own after three weeks without a little nudging from Truvada…
But I’m hesitant to start Truvada right away. The point of starting on a lesser intake of HIV medications with this 800 mg of Prezista is, well, having to take less mgs of medication. I’ve done well on Truvada, Reyataz and Norvir in the past as far as combating HIV goes. So I’m confidant that switch would work out fine. Still, I’m hoping that, despite the odds, this hepatitis B nonsense sorts itself out. As fun as it is to reunite with an old childhood friend, I’d be thrilled if hep B gently faded back into its rightful place in my life.
Which is in the past.
Adventures in HIV Medication Part 2: The Lab Results
September 11, 2013
I posted a blog entry in late July about my decision to switch from week on/week off treatment of HIV to a continuous regimen that consisted of a lower dose of HIV medication. Well, this week I got my 6-weeks-in lab results and….
There’s good news and bad news.
The good news is that the 800 mg of Prezista (with a 100 mg booster of Norvir) did it’s job in keeping HIV under control. My viral load remained undetectable and my t-cell count jumped from 508 in May to 659- my third highest count ever. But the confetti that was supposed to fall from above got blown out the window by the ceiling fans. See, my hepatitis B viral load, which has been long dormant, awakened.
Hepatitis B hasn’t been an issue for me since the 1980s, when my main priority was perfecting my backspin and searching for slabs of cardboard large enough to break dance on. I feel like I’ve been performing all of the classics this summer, especially after the big hemophilia conundrum last month.
So, right now I’m weighing my options. Either stick with the Prezista plan and add a component that addresses the hepatitis B dilemma, or just go back to week on/week off. I’m not completely bummed out by this result, though it was bit surprising to hear from “an old friend” in hep B. That’s because I haven’t really felt any different over the last 6 weeks, which proved to be a very hectic time filled with company, that big show and then dealing with that hemorrhage… I just felt like my tired old self.
I’m wondering if that spike in hepatitis viral load has been a culprit in my low energy levels?
That’s why I’m leaning towards altering my current treatment plan. Prezista is obviously working for me on the HIV front. If I add something to the mix to address the hepatitis B I may be good to go. Will definitely keep you guys updated- and I hope this message finds you healthy and/or happy. As tired as I’ve been feeling, I know it’s of the utmost importance to keep my attitude positive. If you’re dealing with a medical hiccup, try to remember that as well. I know it can be hard when you aren’t feeling your best, but it’s harder to maintain your health and do what’s best when you’re down in the dumps.
Tommy Morrison and HIV Denialism
September 3, 2013
Last Sunday, Tommy Morrison passed to spirit. I don’t have firsthand information on the whys and hows, but I did read an article that said the cause was an infection that occurred when he had pectoral implants removed last year. His promoter, wife and even he himself continued to deny he had HIV until the very end.
I first became aware of Tommy Morrison in the early 1990s, when his boxing career was beginning to explode. He had unnatural power- and made for exciting fights because of his desire to trade bombs with opponents. Sometimes he detonated on them, other times he was rendered semi-conscious as a man counted to 10 in front of him…
In 1996, he tested positive for HIV. In 1997, he was interviewed by Poz Magazine, and he claimed that HIV was a harmless virus and the medications were the poison to be concerned about. I didn’t know his stance at the time, and in that same issue I wrote a column about Tommy. As a boxing fan, I was hoping he’d be joining my ranks as someone trying to shed light on the fact that you can have HIV and still have a normal life.
Instead, Tommy Morrison went all-in on conspiracy theories. After he was stripped of his boxing license and his HIV status was revealed to the world, he dealt with what many of us fear most: rejection. Professionally and personally he likely felt pain that even the confines of a boxing ring couldn’t match. He turned to the internet to research HIV, and that’s where he probably first heard of false positive HIV test results…
And that- after everything he’d already been through- sounded pretty damn good.
Tommy also tested positive right around the time that combination therapy was introduced. It’s now widely understood that AZT monotherapy, the standard course for treating HIV before “the cocktail” was pretty harsh. So, instead of heeding the advice of his doctor, Time Magazine’s 1996 “Man of the Year”, Tommy fired him. And started taking vitamins as he attempted to put to rest the hard living that had derailed his career long before he tested positive for HIV.
But with each appearance in public over the last several years, he began to look weaker as he entered his 40s. And as late as February of 2011, he continued to claim that he wasn’t HIV positive.
In the end HIV denialism played as big of a role- if not bigger- in his decline than HIV itself.
I wish Tommy had chosen to fight HIV head-on, the same way that he fought opponents in the ring. Instead, he was charmed by the idea that he was living with a harmless virus- and then further charmed by the idea that he didn’t have a virus in his body at all. And now, at the young age of 44, Tommy Morrison is gone.
And that is very sad.
Support the Ryan White Care Act
August 26, 2013
Last month I did a video for AIDS Healthcare Foundation about PEPFAR. This month I was once again excited by the topic they presented- the need for continued funding of the Ryan White CARE Act.
Learn more about it by watching the video above. For your convenience, I’ve posted the transcript of the video below.
Hope this finds you well!
In 1984, 13-year-old Ryan White changed the face of AIDS by speaking out
against intolerance. Following his death in 1990, the Ryan White CARE
(Comprehensive AIDS Resources Emergency) Act received vast bipartisan
support and today is the backbone of our fight against HIV/AIDS in the
United States, providing lifesaving treatment and prevention services to
nearly half of all people living with HIV nationwide.
In September 2013, the CARE Act is set to expire. In the four years since
its last reauthorization, we have learned that the key to reversing the
HIV epidemic begins with getting tested for HIV, followed by linkage and
retention of care. This ultimately renders patients noninfectious,
allowing for a longer, happier life. Sounds good, right?
Sadly, gaps in this continuum leave a majority of HIV-positive Americans out of
care: 20% don’t know their status, and of those who do only 40% see a
doctor regularly, leaving less than 30% of HIV-positive people in
America with an undetectable viral load. In July 2013, President Barack
Obama issued an Executive Order for federal agencies to scale up their
Reauthorizing the Ryan White CARE Act is critical to
achieving this goal. Providers like Medicaid and private insurance do
not cover many needed services and do not have the HIV expertise of the
CARE Act to provide everyone with the same level of care.
Keep Ryan’s legacy alive — show Congress that America supports the reauthorization of the Ryan White CARE Act.