Green Week Challenge to Big Pharma
November 8, 2007
So this week is Green Week, right? Well, I think my week-on/week-off meds schedule makes me green enough. That’s half the electicity and whatever else used to maintain my health through meds.
I know, that pat on the back isn’t fair if some readers take meds all the time, which most do who have access to treatment. I’m just dicking around, as usual. I went week on/week off years ago because the general thinking was that longterm side-effects of HIV meds were considered a serious threat. By 2002, when I first did it, I’d had friends who’d tried everything and still died, friends who’d lost vision, developed diabetes, all kinds of things associated with side-effects of HIV meds. With my hepatitis C co-infection, I thought my liver would appreciate a, “vacation’s all I ever wanted, vacation had to get away”. So, in a way, hepatitis C may have led me to a healthy decision for myself. (Note: In 2005, it was discovered that my hepatitis C virus was, in fact, non-threatening to my longterm health. I was in the “Lucky 15″, 15% of hepatitis C non-progressors.)
So for a year and a half I’ve been doing week on/week off with my HIV meds, and I’ve been happy with the results. Which is why I was surprised when I heard the new word on treatment is the old word. An article in Poz said, basically, that the general thinking now is that those old side-effect worries were nothing more than HIV progression. What?After roughly 15 years of watching and studying HIV progression before combination therapy (the multi-pill approach) doctors and HIV/AIDS researchers had no grasp of HIV progression? Or that they genuinely couldn’t figure out what was a side-effect and what was the virus once meds were introduced into the equation?
I knew my health decline in 1999 was a result of HIV progression. Fatigue led to more fatigue and loss of appetite: my body was shutting down. It needed help against the virus. I know for a fact that my first ten months on meds, I had diarrhea. When I switched meds, that stopped. I don’t think my virus was causing that, or the nausea that stopped as well. For two years after that, I took another set of drugs. Then realized I felt crazier than usual. Side effects switched from physical to mental, which was a relief until I realized what was happening. Went on week on/week off for two years, and felt less crazy.
So, I had a brilliant idea which festered from my good health. That was to cease meds for a few months so I could really clear my head and finish my book. A side effect of that decision? My virus actually progressed, out-of-control, causing my immune system to freak out, making me have the worst nosebleed of my life.
That sucked.
That’s why I don’t take meds lightly. But I won’t let side effects of the drugs off the hook as easily as the HIV/AIDS establishment. They are real. Don’t tell us that it’s all the virus, don’t insult our intelligence. We can handle a world of grey, where the effects of the virus and side effects co-exist. Now I’ve been on my second round of week on/week off for a year and a half. I’m good at remembering when I restart, and when I stop, and my t-cells and viral load have remained stable. I’m not saying this would work for everyone- other factors come in such as a healthy living environment and I don’t abuse substances outside of the quarterly letting-down-of-the-hair.
But I am saying that this should be considered.
I feel compelled to write so, because I know it’s just not on the table. God, I think I read it somewhere and somehow my doctor agreed to monitor the results. But it was only because that thought or ideal was out there. And now it’s not. And I don’t think my improvements in health and lessened side-effects are some major fluke. So here’s my Green Week Challenge to the Pharmaceautical Companies or the Bill and Melinda Gates Foundation or Oprah or anyone else with hundreds of millions of dollars and more than a passing interest in HIV/AIDS: Fund major studies on week on/week off HIV treatment.
Positively Yours,
Shawn
Erin Weed: Women on Top
November 5, 2007
My friend, Erin Weed, is an ass-kicking machine who teaches women’s self defense. She has written a book called Girls Fight Back, and has just launched her radio show on Women On Top Radio… and none other than Gwenn was her first guest! You can hear the radio program and meet Erin by reading her blog.
Enjoy!
Positively Yours,
Shawn
You only fall for Erin Weed’s “Hey, you got something on your shirt,” prank once. Once.
I’m ready for the Hemo Cure
November 3, 2007
I want there to be a cure for hemophilia. Preferably within my lifetime.
In the meantime, I want to support, loudly and passionately, the person whom I feel will make the best President of the United States. I’m disappointed that, in political speak, “forward-thinking” and “no-hoper” are synonyms. I’m upset that the Democratic Party is rallying around the biggest hawk on their squad. I’m embarrassed that two families will have dominated American politics for over two decades, and am also afraid because I know I live in a country that will not be able to elect a black man or a white woman in the year 2008.
In my lifetime, I’m more likely to live to see China- the human rights capitol of the world- become the dominant power of the world than I am to see a cure for hemophilia, or any other illness I am currently living with.
In the last seven years as an HIV/AIDS educator, I’ve noticed a decline in the knowledge of how HIV is spread. YouTube is funny, but read those comments. The anonymity of internet has awakened us to the sad fact that racism and homophobia are simply part of our cultural DNA. We cast votes as a nation, sheep-like, to deny the right for two people to express their love. And, God forbid, visit one another in the hospital should one fall ill.
My body is healthy. I love my country, and the fact that I have access to medications that have prolonged my life. But my mind is sick, at least it is whenever I think about politics and that there is no accountability in our government. That closeted gay men are passing anti-gay legislation.
Naughty, naughty boys.
The problems fall on both sides of the political spectrum, but it was the Republican party that pushed the current administration to the top, and it was the Democratic party that refused to caution the American people about whether or not we really want to elect a recent President’s son in a country where we tell our schoolchildren that anyone can grow up to be president.
I don’t know about you, but I think the daughter of a Clinton or a Bush has a much better shot than the thinblooded son of Pam and Buddy Decker.
Just some thoughts. I feel better now.
Positively Yours,
Shawn
The Day of the Dead
November 2, 2007
Earlier this week, Gwenn and I went to Cleveland to visit her mom, and we were on our way back home on Halloween night, and Gwenn was feeling really guilty on the flight home.
“I left the front porch light on,” she said. It was just eating her up that little ghouls and goblins were ambling up to our door, knocking and knocking to no avail. Fortunately, when we got home we weren’t treated to eggs or anything on said door.
The next day was the Mexican holiday, the Day of the Dead. Go Wiki it, it’s a pretty cool thing. Ironically, I felt really alive after a couple days of sluggishness, and woke up bright and early, ready to tackle the Day. We went to the Bluegrass Grill for some downhome breakfast, then to Java Java, where my friend was shocked to see me at 10 AM. Nothing like a Day of the Dead spook.
With my iced mocha fix, Gwenn and I walked down the downtown mall a bit, and there were some Day of the Dead decorations in the windows, which was fun to look at. Then it was back home to pack up my things and fly out at 1 PM down to Orlando for the National Hemophilia Foundation’s Anual Meeting, where I am now.
I usually don’t embarrass readers in my blog, but I’ve been on a roll lately and Britney was actually honored to be posted. When I got here last night, one of the cool folks who works at AHF (American Home Federation, the good folks who supply my hemophilia meds) gushed about this little ‘ol blog. So here’s a shout out: Thanks for reading! No, you’re not stalking me, you enjoy a finely written blog by a handsome bleeder, and you are not alone.
I hope.
So yes, today I do some light lifting at the AHF booth in about a half hour, signing books and greeting the thinblooded masses, many of whom I recognize from last year’s conference and HFA (Hemophilia Federation of America, I know, this is more confusing than pro wrestling) conference me and Gwenn spoke at in Albuquerque.
OK, no neat tidy bow at the end of this one. Happy November.
Positively Yours,
Shawn
Sex Education: Banned from Charlotte Airport?
November 1, 2007
Today is the Mexican holiday, the Day of the Dead. Yesterday, I tried to post a blog on here, but was unable to access the Poz directory in the Charlotte airport. Instead, I got this message: “Forbidden Category: Sex Education”.
Talk about a Halloween scare.
Here’s my blog from yesterday, before being spooked and reminded that the issue of Safe Sex is officially dead in this country. OCTOBER 31
A couple of weeks ago I blogged about that magazine, Grazia, that interviewed Gwenn. How they had a promo of the article on their web site, which read: “Meet the young woman who risks death every time she sleeps with her husband”? Well, we finally got the issue in the mail. And here’s what they had on the cover: “Sleeping with my husband could kill me!” And then again, inside, splashed across a picture of us standing together, not smiling.
If there’s a morbidly funny aspect to this, I guess it’s that they used a quote from Gwenn that was never uttered, which should be obvious to the reader once they get through the article, where it never appears. Because Gwenn would never say such a ridiculous thing. This flies so much in the face of what we’ve tried to do as educators, which is to empower both people with HIV and without. What ticks me off is that they put those words in Gwenn’s mouth to get people to read it.
So, if you are in need of a last minute Halloween costume idea, you may want to go as my penis. Because apparently it’s pretty scary. ( I can give you specifications if you are interested.)
Positively Yours,
Shawn
LIFE IN PHOTOS
Face Time fun with my Goddaughter. She was digging our phone chat- even though we were about three feet away from one another.
Making the enemy quit out with @squirrel_munky and @vaineos :)
Closing out the Joe with @gwennbarringer this afternoon.
Caught in full Mocha Mode...
Speaking About Sexual Health
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