Shame on My Dirty Mouth! Yep, #ThisIsSjögrens!

I spend a lot of time trying to learn best practices for caring for my Sjögrens so that I can live well today and prevent as many medical issues as I can in the future. In fact, I would say that I’m very well-educated in product options, tips and medications. This doesn’t mean that I always practice perfect self-care discipline, but I certainly know what I should be doing.

Oral healthcare has not been an area where I have been lax! I use my Sonicare toothbrush, xylitol toothpaste and mouthwash, prescription flouride toothpaste (and leave it on), and I use MI paste (calcium phosphate creme). I take Evoxac. I see my dentist three times per year and I brush after meals. And of course, I have xylitol mints throughout the day.

I have had one cavity the past twenty years…until now. I was horrified when my new dentist said:

“You have fourteen cavities that we need to fill, and the sooner the better!”

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Tips to Move Through Autoimmune Stages

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!

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How to Define Your Autoimmune Stage Clearly

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.

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.

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.

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10 Stages of Autoimmune Grief and Life

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.

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”

Relapse to Reinvention — Life with an Autoimmune Disease

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 wonderful events so we can stay informed about our disease, get tips from the country’s top doctors on Sjögren’s Syndrome, and learn about the future of therapeutic approaches.

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 for all.

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”