This is the final post to recreate my keynote speech delivered at the 2016 Sjögren’s Syndrome Foundation National Patient Conference April 8th and 9th in Seattle.
One of the most difficult challenges to face when living with an autoimmune disease is knowing that you can’t necessarily perform at the peak of your potential. This thought is not only a major blow just after diagnosis (and part of the initial grieving process), but continues to rear it’s head as your disease level changes over time .
This was the key challenge that inspired me to create the Autoimmune Grief and Life Stages and design a program to help me adjust in a healthy manner. I knew that if I wanted to work (and live) at the highest level of my capabilities, I needed to know the parameters of my capabilities. These parameters can change without much notice (depending on my disease level, emotional stage, or the required commitment level of the opportunity) and paying attention to my Sjogrens history helps me know how to create my future.
As I’ve stated in earlier posts, I try to be very mindful about the emotional and physical stage I’m in, and then utilize tools to help me get to a better stage. I call this being on the Road to Reinvention, and I’m getting pretty good at it!
Continue reading “Tips to Move Through Autoimmune Stages”
This is the second blog post to recreate my keynote speech given at the 2016 Sjögren’s Syndrome Foundation National Patient Conference April 8th and 9th in Seattle. You may want to read the first blog Relapse to Reinvention. This post is about 10 Stages of Autoimmune Grief and Life.
After my diagnosis of Sjögren’s Syndrome in 2006, I began the difficult work of grieving the loss of not only who I was, but the dreams of who I wanted to become as a healthy individual. I was so exhausted and in such pain that I knew that I probably could not aspire to be CEO of a large company, or that I would not spend 50% of my time traveling. I also realized that I would need to incorporate new ways to care for myself including altering eating habits.
This last one may not sound like such a big deal to many people, but one of my top pleasures in life is exploring the world looking for the most amazing food available in any culture…and pairing that with the local fermented beverage of choice! So yes, altering my love of food exploration (spices, textures, acids, heat, etc.) was a great sadness to me. There were many other things in life that I thought were too challenging to be worth the effort, however, this blog is about Reinvention and looking for new and fulfilling ways to live life and explore the world….so onward. Continue reading “10 Stages of Autoimmune Grief and Life”
Last Friday night, I delivered a speech to over 400 people who live with Sjögrens (just like me). This disease effects approximately 4 million people in the US, yet is drastically under diagnosed and under supported by the medical community. Thank heavens we have the Sjögren’s Syndrome Foundation that produces these events so we can stay informed about our disease. The conference also gives us the ability to chat with other patients about how they manage their life with an Autoimmune Disease.
I was honored to deliver the keynote speech at dinner and even more honored that so many people responded positively to my story and some of the ideas I presented. As promised, I am gong to recreate the speech on this blog, so the tips and illustrations I presented can be easily available.
I will segment my speech into several blog posts, this first one focusing on my experiences the 8 years before diagnosis and the first few years after diagnosis.
Continue reading “Relapse to Reinvention — Life with an Autoimmune Disease”