Monday, June 30, 2008

San Diego

My little jaunt to San Diego was lots of fun. These trips never allow for sight seeing, mostly I'm in meetings and see the inside of the hotel and that's about it. The sites consist of what I see as the driver takes me to my hotel.

I will say that I was shocked by how mild the climate is! I expected heat and humidity, but it was soooo arid! 75 during the day, 60 at night.

Also, NO MOSQUITOES! We sat outside in the evenings and despite the bright lights in the cabanas, there were no bugs. It was really odd. And it's soooo brown! You'd think it's California, land of fruit and produce, but San Diego was sooo brown. No grass, few trees. It was easy to see how these areas can go up in flames with nothing more than a cigarette butt out the window.

But the best thing about these meetings is getting to see friends who've become so much more. This was a meeting of a consumer advisory board for a large pharmaceutical company that makes anti-hemophiliac medicine. We help the company identify the needs of the bleeding disorders community and develop materials to meet those needs.

I've been part of the group since the boys were small. There's a kind of "core" group of folks who have been around for a long time and we've become family.

There are a couple other parents of children with hemophilia and we've watched our kids grow up, passed along advice for difficult times and shuddered as some have even begun to drive!

There are also "patients", or individuals living with hemophilia who are part of the group. There's the man I met when he was in his late 20's who is HIV and Hepatitis C positive. I met him when he was single and now I am just delighting in watching him and his wife of 5 years as they begin to plan their own family. I've watched him grow more and more comfortable with disclosing his HIV status. Although, his inlaws still don't know. He lived through high school and college without being able to tell anyone that he was living with HIV. He still lives with the fear of disclosing so I feel privileged that we can talk so candidly.

There are a couple guys who are like "uncles" to my boys. They have families and children of their own. One was lucky enough to escape HIV but had Hepatitis. The other has both. Their marriages survived the men not knowing anything about HIV, to wondering if they'd been infected, finding out their status, wondering if they'd infected their wives and children and learning that they hadn't.

I know two other men who were infected with the virus and unknowingly exposed their wives. Their wives have since passed.

Some of the guys are like Bionic Men with all their internal hardware.

We get together about twice a year and we do nothing but laugh and give each other a hard time. It's wonderful. This group of misfits and survivors; it's like being with extended family except I actually LIKE these people. And my extended family doesn't understand what it's like to live with hemophilia like these folks do.

Our conversations run the gamut from t-cells, anti-retrovirals, venous access devices, needle sizes, bad doctors, nasty insurance companies to books/music/movies we love, family triumphs and the weather.

Members of the bleeding disorders community refer to themselves as Blood Brothers and Sisters. And that's truly what it feels like. Blood is thicker than water.

I might not have gotten to see the sights but I'd spend a weekend with this group anywhere.

2 comments:

Jennifer said...

A couple of years ago we lived between San Diego and LA, in Orange County and I must tell you, the lack of mosquitos was fabulous. There also weren't any house flies! (Of course you did have to check your shoes every morning for black widow spiders, and a little girl was bit by a rattle snake in our neighborhood, so I guess everyplace has its trade-offs!).
I'm glad you had a great time at the conference but it really is too bad that you didn't have time to sight-see; it truly is a beautiful area.

i do not know me said...

I would definitely take snakes over mosquitoes. The desert SW is the best.