This is the third 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 previous posts about the speech: Relapse to Reinvention and 10 Stages of Autoimmune Grief and Life. This post is intended to help you Define Your Autoimmune Stage Clearly.
If you are reading this article, you are probably living with an autoimmune disease or you love someone who does. One of the most important aspects of living well (or as well as you possibly can) when you have a chronic illness is to be very honest and very mindful with yourself. It’s the only way that I’ve found to be effective at managing the disease, avoiding as many relapses as possible, and living a fulfilling life.
I love the word “mindfulness”. In general, it means the honest recognition and acceptance of current thoughts and feelings with the goal of reaching a place of greater good. For autoimmune people, we also need to add being mindful about the past: what causes relapses, what helps us feel better, where do we get stuck, etc. There is much research on mindfulness and how to apply it as a meditative, psychological, or (even) business practice, but I am using the term more generally. I try and practice mindfulness so I can accurately recognize my autoimmune stage and either grow to a better state or maintain the great state I’m currently experiencing. Mindfulness may be the best tool to help define your autoimmune stage accurately.
As a person living with Sjögrens, mindfulness is a critical practice because I need to measure changes by inches — not miles — in order to define my autoimmune disease stage clearly and live as well as I possibly can. And this is where it can be challenging, especially for people who have not been managing their disease for very long.
Continue reading “How to Define Your Autoimmune Stage Clearly”
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”
I am pleased to be speaking at this year’s National Patient Conference produced by the Sjögren’s Syndrome Foundation. My keynote address will be Friday April 8, 2016 at 6:00pm. I hope you will join us, along with 400 or so other Sjögrens patients, to learn more about our Autoimmune disease and how we can live our best lives.
My speech is titled:
My Sjögrens Life
Relapse to Reinvention — Navigating the Changing Stages of Living with an Autoimmune Disease.
I will also post parts of the speech on this site, just in case you miss it. But I hope to see you at the Sjögrens National Patient Conference 2016!
May 2015, the Sjögrens Foundation ran an article of mine in the newsletter The Moisture Seekers. Here are some of the tips I presented that may give you some ideas about managing your Sjögrens.
I embrace my disease – not fight it!
Instead of imagining an internal army kicking the sh** out of Sjögrens (as my friends who had successfully killed cancer had suggested), I found the imagery of embracing my Sjogrens to calm it down was what finally did the trick.