Saturday, April 16, 2011

Sick Girl Speaks

Rob and I had the opportunity to attend a CF forum today hosted by Kaiser. It was the first time Kaiser had invited OHSU patients to their event. I had no idea Kaiser had been hosting their own forums/seminars and OHSU their own. I hope inviting each other is something they keep doing.

The one we attended today was more on a personal level. They had a panel of 3 CF patients who spoke to us about their different experiences with the disease. Two had been diagnosed as babies but one not until she was in her 40's! What was interesting is she seemed from an outward appearance to be the healthier of the three. However, she also spends up to 4 hours a day doing her treatments. One young man looked like he'd been having a hard year and he admitted he had. The other lady was also having a harder year but she admitted to not being as good about her treatments. She is also suffering from diabetes. It was just amazing to see how different all three viewed their illness and how it affected their lives.

We then had the pleasure of listening to Tiffany Christensen speak. She is author of the book "Sick Girl Speaks!". She was so fun to listen to. Tiffany had you laughing one minute and tearing up the next. Though the tearing up may have just been me since I cry at the drop of a hat these days. She had so many wonderful insights into her illness and has had an incredible journey through life. She was selling and signing her book after so we picked one up and had her address it to Elizabeth. We gave the book to Elizabeth when we got home and even though it may be a bit over her reading level she is already trying to read through it. E told us she was happy to have it and I think it will do her some good to see she's not the only one suffering from CF. I plan to read it when she isn't and hopefully it will bring up some good conversation.

All in all I'm glad we went. I think we both learned a lot.


vaxhacker said...

A lot of the time the best thing to help you get through a difficult set of circumstances is the support of other people who know exactly what you're experiencing.