When I was growing up, my grandparents had a trailer on St. Joseph’s Island in Lake Huron, Ontario.  My grandfather would often take his (numerous) grandchildren out fishing in the motorboat.  After one such outing when I was eleven years old, my grandmother called to the kids, asking if there were “some strong boys who could help grandpa with the boat”.  My cousin Julia, who was just a few years older than me and who I strove desperately and unsuccessfully to emulate in every way, yelled angrily across the beach: “Just because I DON’T HAVE A PENIS, doesn’t mean I CAN’T MOVE A BOAT!”  In that moment, thanks to Julia’s passion and ensuing tears, I knew I would have to prove to myself and to the family that I was a feminist too.

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I’m doing some research on HIV and aging, a wonderful term that one wouldn’t have expected even five years ago. I was talking a few weeks ago with several HIV+ women about their experiences. The conversation turned to symptoms: sleeplessness, night sweats, fatigue, and difficulty concentrating. These are typical symptoms pos people experience. But many women will deal with these symptoms during perimenopause regardless of HIV status. So the question for pos women becomes, are these symptoms HIV-related or perimenopause related? Or both? And when should you check in with your doctor?

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The buzz in the HIV/AIDS community these days is all about the International AIDS Conference. I attended one of the conferences in 2002. It was a whirlwind of activity and I wish I had been better prepared for the magnitude of the event. After the first day of just bouncing around aimlessly I made the point of sitting down every evening with the conference guide to choose what I would do the next day. I reviewed my plans over breakfast and then headed out the door. For a week I was immersed in the international HIV/AIDS community. I engaged in dialogue with people from around the world; my room mate was from Israel and she opened my eyes to challenges I had never thought about before. We were staying in a university dormitory with a few hundred other conference attendees. It was very exciting with conversations going well into the night.

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Many people looking into HIV Treatment for the first time are concerned about drug-resistant strains of HIV.  It’s no wonder, with all the news out there about a “super bug”.  It is true that HIV mutates and evolves very quickly, and inside a person’s body, it can be resistant to specific drugs that person is taking.  But this is just one piece of the HIV drug resistance story – and maybe not the most useful piece for people who are newly diagnosed and wondering how they will respond to meds.

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I do love Dr. Robert Frascino, aka Dr. Bob.

Dr. Bob is sex-positive, HIV positive and out about it, wonderfully frank and funny as he educates people on The Body about HIV transmission and prevention. His writing makes people feel comfortable to ask what can be deemed strange but true questions.

The ongoing theme in these questions is fear and the ongoing answer is to educate yourself, directly delivered by the good Doctor. HIV is not as readily transmitted as herpes or human papillomavirus (HPV), but it’s good to know the transmission “formula” when making sexual decisions, particularly with a partner whose HIV status is unknown to you.  Dr. Bob offers encouragement around testing when he thinks it’s applicable and encouragement to learn more about HIV for future liaisons.

He also catches amazing fly balls. One section he writes lists the questions as “I’m Positive I’m Positive.” People throw him anger and accusations of stupidity. It is the Internet after all, where anonymity can prompt people to, shall we say, abandon their manners.  There was the poster who’d been seen by multiple HIV specialists who all confirmed he was not infected with HIV, yet accused Dr. Bob et al. of incompetence, and insisted he should have access to HIV meds. This poster isn’t the only one with great fear.  

Dr. Bob’s messages are clear: know your risks. Know your status. Get care when needed. HIV is a fearful disease to be sure. But the fear it creates can be bigger than the risk of getting it. Dr. Bob tries to keep it all level. And living with HIV himself, he’s aware of the wonder of life. Gotta love him.

- Janet

This week, we got a message from the folks at hivdating.ca – an online dating service for people living with HIV in Canada.  They were asking us to advertise by providing a link on our site.  We can’t do that, but I thought hey, now there’s a great topic for a blog post!  Dating is pretty universally accepted as “difficult”, because of the pressure to impress.  We all have things about ourselves that we would rather not share, but whether you’re hoping to hook up or looking for true love, you will undoubtedly need to share some of them.  HIV and STIs are definitely on the must-share list.  Long term romantic relationships depend on trust, and as soon as sex is on the agenda, there is a legal obligation to disclose HIV status.  The thought of disclosure and possible rejection is enough to turn anybody off of dating, but it shouldn’t be that way.

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For the last few years I have served on PWN’s board of directors. We have at times been a small group, with directors coming and going, but we always sought diverse representation and participation of HIV+ women. It has been a satisfying experience and I know I will run for election again in the future.

My first foray into sitting on a board of directors was with the Canadian AIDS Society 10 years ago. I was nominated by my peers and encouraged to give it a try, so I did and much to my surprise, I was elected. I was curious and eager to be involved. I also had no idea what I was getting into! Thankfully I had joined a very supportive board of directors who modeled for me a whole new set of skills. It was at times painful and I often felt awkward, but with perseverance and observation I learned the protocol and felt my confidence growing.

For me, the largest challenge of board work was defining what I was doing – what does a board of directors do? What does a director do? I needed to figure that out for myself and put it into my own words before I could trust my ability to contribute. I reckon board work involves accounting to and representing the membership, overseeing the society’s budget, observing and (when appropriate) evaluating staff performance, appraising potential research and community projects, participating in fundraising, and representing the society in public. I feel most competent as a director when I am attentive to the voices brought to the table and when I have informed myself of the current and emerging issues.

I have always felt a need to volunteer and this need has been expressed in various ways over the years. Sitting on a board is something I enjoy and it engages both my interests and my skills set. It requires me to look at the ‘bigger picture’ while keeping an eye on the details. For example, I am primarily engaged with safe and affordable housing advocacy. I join protests in keeping with my code of ethics, and I try to educate and stir up compassion in others. PWN has portable housing subsidies and I got involved with board work pertaining to these subsidies. Did you know that the money raised for PWN during the AIDS Walk goes towards these subsidies? The details are me staying informed and active; and the bigger picture is my board work around housing research and policy.

I feel confident of the work I did while on PWN’s board and I am excited to see what the new board does in the coming years. I leave with nothing but the best of memories and desire for more.

- Monique

The Annual General Meeting of Positive Women’s Network’s will take place on June 29.  
  

There has been a flurry of events in recent weeks aimed at connecting immigrants and refugees with the health and social services that are available.  At PWN, finding a way to reach immigrant women who are living with or at risk for HIV is like the Holy Grail.  I had the distinct (and somewhat accidental) pleasure of attending three recent intercultural events.  All were successful events at which I learned a lot and make some connections that I think will be useful in future.  But I came home with dozens of business cards, highlighted notes, and ideas that are completely disconnected, and it got me thinking about Canadian multiculturalism, the joys and challenges of Vancouver’s diversity, and the overwhelming sense of disconnectedness that newcomers must feel.

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For women with HIV who are contemplating pregnancy, thankfully there’s great care and support here in BC. With medical care and HIV treatment, the likelihood of having a baby with HIV is less than 1%. Dr. Jack Forbes of Oak Tree Clinic reported at the recent CAHR conference on perinatal infection rates in Canada between 1997 and 2009, and for women who took the full recommended treatment during pregnancy, the transmission rate was0.7%. 

Positive women are having multiple healthy children and enjoying the joys and challenges of parenting. But being an HIV+ mom and dealing with questions from people who might not know about HIV can be stressful. Questions around breastfeeding alone can be tricky for women who haven’t disclosed to everyone in their community and wish to maintain their confidentiality.

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It was great to be at the Canadian Association for HIV Research conference in Saskatoon earlier this month. Lots of interesting stuff unrolled at CAHR, but one plenary session in particular lit me up. It looked backwards at the origins of HIV and forwards at what we can do to bring an end to AIDS. 

Friday morning was bright and sunny in Saskatoon, but a dark hotel room housed a crowd to hear Doctors Mike Worobey and Mark Tyndall. Worobey’s work is dedicated to exploring the origins of HIV, a puzzle that hasn’t been solved, nor its findings fully agreed upon. Understanding how HIV has evolved could lead to new developments- perhaps a vaccine (although Worobey admitted he isn’t hopeful for that, given HIV’s mutation rate), or at least microbicide options. Tyndall cast his eyes forward, stressing the power we do and don’t have to limit the spread of HIV.

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