Sunday, August 14, 2011

Radio, Radio

Dr. Burt was recently interviewed on air regarding the ASSIST study, and a link is provided here for those interested. The interview once again reviews the phenomenal results this study has shows as compared to any other prior intervention with aggressive systemic scleroderma.

I return to Chicago late this month for a reevaluation. I'm feeling pretty well overall, although I still have symptoms of disease. The transplant didn't "cure" me but my life is vastly improved. My biggest complaints remain my shortness of breath and my joint pain.

I'm heading to my first horse show in more than a year this week. I'm pretty nervous, as Costa and I have not really figured each other out. It will be a lot of work to get there, I'm sure, but I want to enjoy this opportunity to go out and have some fun, see my friends, and share in the excitement of a horse show.

Then it's on to Yosemite to remember the life of Steve's brother, Dale, who passed away from a brain tumor nearly 10 years ago. We call it, "Lunch with Dale," our annual pilgrimage to his favorite site. Nothing like perspective to make you appreciate the gift of a good day.

Here's hoping you are enjoying one, as well. :)

Wednesday, August 10, 2011

Happy Birthday to Me!

Can you believe it's been a year?

Today is the one year anniversary of my stem cell transplant. It's amazing to be where I am.

I had a rather shocking moment at the Scleroderma National Convention this year. Dr. Burt said during his lecture that the average life expectancy of someone with systemic scleroderma and a TAPSE score of less than 1.8 was one year. Well, one year ago my TAPSE was 1.6, but today I enjoyed a wonderful ride on my new horse, Costa, and I plan to attend a horse show next week. :)

I am so lucky to have enjoyed this ride, as well, with all of you. Thanks for all of the love and support of the past year. My fight continues, but it doesn't feel like a fight every day anymore. It feels like a magical and wonderful life.

I am so grateful, and I hope that we will continue to make progress in the treatment of scleroderma.

Video of Holly and Costa