Meetup in San Diego

On Saturday several members of the online forum, Hep C Nomads, gathered in Balboa Park, near the fountain and the science museum. For the first time, we met face to face. We seemed already to be old friends. Two were still taking the ribivarin/interferon treatment, so travelling to the meetup was really tiring. We talked and talked, sitting under a patio umbrella. The wife of one of the patients joined in with gusto.

It's been a privilege, which I hope will be repeated more and more often in the future, locally and regionally. The only support groups I have found were all part of hospital or other programs, and were intended for their own patients or clients. Concerned people simply have to start their own, and use the phone or email.

Meetup

Several people who know each other through the online resource, Hep C Nomads, will meet in San Diego on Saturday, May 29th, at noon in Balboa Park, The Prado, outside the Reuben Fleet Science Museum. There's a beautiful plaza there, with a fountain. The small coffee shop in the museum has outdoor tables and chairs. Two participants are traveling from other states, and some from other California cities. This will be the first of what I hope will be annual events of support and advocacy.

This is an open social event. Patients, families, wellwishers, and professionals are welcome.

Talking About Hep C

Recently I've had two opportunities to share my experience in treatment with others who have Hepatitis C, or are considering being tested for it.

At a focus group for Family Health Centers, people had many questions about treatment. I felt really good about being able to respond, and to offer encouragement.

My first experience as a volunteer on a team from American Liver Foundation was at San Diego Rescue Mission's detox center. Again, I described my own experience, responded to questions, and encouraged people to find out their status. I advocate getting treatment early. If I had gotten earlier treatment, I would not now have liver damage.

Kristin Luton, the Programs Manager at the local branch of American Liver Foundation, gave an excellent illustrated talk on the liver in general and on the hepatitis viruses in particular. I look forward to sharing many liver health education sessions in future.

Preparing to Speak

I'm writing up a narrative of my experience with Hep C, as a basis for speaking about HepC and the need for diagnosis and treatment. I'll meet with a rep of American Liver Foundation this week. Three people would go as a team to community centers, rehab programs, prisons.

Healthier

Still gathering info and having discussions about starting a support group for people with Hepatitis C.

Happy New Year!

I've just spent hours on HepC Nomads, and on links and blogs referred to there. Suddenly my community is expanding even more. Literate blogs, passionate discussions, information, kindness and compassion all days.

My resolutions or plans:

1. Lose weight, eat healthily, and exercise
I'm looking into Shrinkathon, a 12 week program in which people raise money for a charity - say, a dollar for each pound lost.
The Fibromyalgia Cookbook - looks interesting - I can at least reduce the amount of sugar, dairy and gluten I eat, even though I'm pessimistic about getting them out of my life.
Tai Chi classes start in mid-January. Now I can travel to them and meet a schedule, as my recovery has brought more consistent energy.
Resume STEPS program, recording daily steps shown on my pedometer.

2. Help start a local support group for people with HCV.
This will be my way to live up to The Charter for Compassion. (see CharterforCompassion.org)

3. Sign up for the volunteer speakers' program of American Liver Foundation to give presentations on Hepatitis C and its treatment options.

Welcome, Year of Possibilities!

The Humanist - a magazine of critical inquiry and social concern

The Humanist - a magazine of critical inquiry and social concern

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