Happy Birthday, Sean Strub
May 16, 2014
May is full of birthdays featuring beloved people in my life. Just this past Monday, I got to see my big brother and celebrate the day of his arrival.. it was 41 years ago that my parents welcomed him on Mother’s Day. This Monday, my best friend and partner, Gwenn, will be enjoying a birthday- I’ve been most privileged to be with her for the fifteen of those celebrations, and look forward to many more together.
Today’s birthday boy happens to be Sean Strub. I can’t effectively express what Sean has meant to me, both as a mentor and a friend. Had he not read my fan letter to Poz in 1996 and responded, who knows the path my positoid adventures would have taken? I’m grateful for his friendship and the guidance he’s offered over the years.
Happy Birthday, Sean. I love ya.
——Click on the festive picture of Sean to order his incredible book, Body Counts.——
National Nurses Week
May 7, 2014
Every day is Day, every week is a Week, and every month is a Month of one type of recognition or another. It’s not a bad thing- there are lots of causes that need more attention than they can get. Especially in this great age of great distractions.
I miss a lot of it. But when I noticed that we were halfway through National Nurses Week, I felt the call to pull out the ol’ laptop and punch out a blog post of love and gratitude for my lifelong friend and ally: the nurse.
As a kid with a bleeding disorder, I found myself visiting the hospital a lot more than the rest of my friends. It could be a scary place. Initially, I hated having my blood drawn. That was until I noticed a pattern: Nurse Gail never missed a vein. And I enjoyed talking to her. Having a needle in my arm went from, well, having a needle in my arm to having a friend by my side. I’d always request Gail, and since she worked a lot, she was usually there for a quick catch-up session over vials of plasma.
In the bigger picture with regards to the HIV epidemic, it was often nurses who cared for the first generation of people who succumbed to the onslaught of HIV. When friends and family were too scared to show up, it was the nurse who provided comfort, which surely meant a lot when doctors were providing no answers or solutions to what was happening back then. The strength of the nurse was and will always be a simple, if elusive and rare, trait: tireless compassion.
It’s not an easy job to turn a hospital into a home away from home, but somehow nurses pull it off. I know I’m forever grateful for all of the nurses who have shown me kindness and care when I needed it most.
The 30/30 Project
April 30, 2014
Ryan Lewis is best known for his work with Macklemore, which has earned him 4 Grammys. Something that not many people know is that his mother, Julie Lewis, has been living with HIV for 30 years. Alongside Julie, Ryan is looking to score another home run with a collaboration that could bring health care to people around the world who currently do not have access to it.
Please watch the video above or click here to learn more about the 30/30 Project and their goal to build health care centers to provide HIV care to those who need it the most.
Ripley’s You Better Believe It
April 28, 2014
Vaughn Ripley is a man on a mission. With over 30 years of living with HIV under his bike shorts, the avid cyclist, dad and author of Survivor: One Man’s Battle With HIV, Hemophilia and Hepatitis C is ready to tackle his next goal: be the first openly HIV positive man to grace the cover of Men’s Health Magazine.
The cool part about all of this? We can help make it happen. Go here to vote for Vaughn. He got a retweet on Twitter from William Shatner, but if he’s going to get beamed up to the cover he’s going to need your help, too!
Help Honor Ryan White’s Legacy- Takes One Minute
April 8, 2014
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.
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.
At 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.
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.
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.
A 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…
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.