This past year, with Covid-19 in our lives, has been such a challenging time. It’s been especially challenging for those of us with chronic illness. We already live with the uncertainty of our health and many of us already had challenges with feeling isolated. So the past year has delivered an extra dose of anxiety to add to those concerns. But like most people in the world, we too have been excited about the vaccine. Because once we have a large percentage of every community vaccinated, we can all begin to heal — physically and emotionally. But is the vaccine safe for people with an autoimmune disease? Is the Covid-19 Vaccine recommended for Sjogren’s patients?
This week, we have some news about the Covid-19 vaccine that will help us rest more easily. (more…)
It was my honor to deliver the Sjogren’s National Patient Conference speech “How a Coach can help you live your best life”. As a patient, I have spent a decade researching and practicing life-hacks so I can live a good life with the complexities of Sjogren’s. And one of my favorite life-hacks is hiring a Certified Coach. You can always tell when I get really excited about something because I dive in headfirst and become certified. I am now a certified yoga instructor and a certified coach because I believe in the power of both of these disciplines to help me and you live well with chronic illness. This post highlights 5 ways a coach can help patients live their best lives.
It all starts with the stories we tell ourselves…
It’s the end of May. And every May I have the pleasure of sharing what happened at the Spring Sjogren’s Foundation Board of Directors meeting. Being Chair of the Board of this amazing foundation is one of my favorite jobs ever. It is an honor to be a patient voice on the Board and it is a privilege to work with such exceptional people who work tirelessly for Sjogren’s patients. The all-volunteer Board is a group of amazing people — patients, doctors, and other voices. But it’s the staff of the Foundation that makes the organization shine so brightly. And this past year has been a stellar year on all fronts.
Now, you might think that the Sjogren’s Foundation, like many other organizations and non-profits, took a blow when the pandemic hit in the U.S.causing the year to have a downturn. But the Foundation was on a track to have it’s best year ever and then the took decisive action when the pandemic hit. They not only communicated to us whether we were immuno-compromised (or not) to better assess our risks, but they also created new and outstanding programs so that we could feel supported during a scary time! This really did highlight what our CEO, Steve Taylor often says, “everything we do, we keep the patient first”.
I have been on the Board for seven years and have been the Board Chair for two years. Never have I been more proud of the Foundation and our staff than I am today. In this post, I will review some of the big achievements of the past year and I think you will be proud too!
Tomorrow, as Chair of the Board of the Sjogren’s Foundation, I am hosting a program on Building Resilience with Meditation and Mindset. This phone-in program is for members of the Sjogren’s Foundation who have registered (the registration is filled to capacity). As I prepare for the sessions, I thought I’d also write this post to share the information for those who can’t make the call.
You may ask why I am choosing the term “resilience” instead of inner calm, or positive mindset. The definition of resilience is, “the capacity to recover quickly from difficulties; toughness”. And to be resilient, one has already started the practice of creating a positive mindset and creating inner-calm. In fact, that is a huge part of being a resilient person. So during this Covid-19 Pandemic time, why not use tools to help us through this very stressful time now, and also set us up for future resilience! That is my hope for sharing this information with you. By practicing some meditation and positive mindset exercises, you can help your stress now, as well as build your resilience for future stressors and challenging events!
I have found that living with an autoimmune disease brings its own level of anxiety. Before I had Sjogren’s or the major symptoms of Sjogren’s, I really did not have much anxiety in my life. I had a sense that if I needed something, I could work hard enough to either get it, avoid it, or bounce back from it. In essence, I had a pretty good sense of what I could achieve and control in my life. Enter Sjogren’s and anxiety — and the new experience that I no longer had control over my own body. That was my first experience of taming anxiety during uncertain times. As you all know, receiving your autoimmune diagnosis is a relief at first, and then it throws you into the realm of living with uncertainty.
My anxiety tends to show up as the fear of the unknown. For me, it’s predominantly the fear that I may not be able to make enough money to pay for treatments and my cost of living as I age. That’s my big one! However, I’ve learned many techniques to help calm my anxiety and focus on what is most important to me.
Enter Covid-19! I have now ramped-up my practice to manage my increased anxiety during this very uncertain time. See if some of my practices can help you!
I’m a big fan of the Sjogren’s Strong Podcast. This podcast is an upbeat show created and hosted by Lupe Castaneda (a Sjogren’s patient) and her husband Brian Colburn. Last October I was honored that they reached out to me to participate in a Sjogrens Strong podcast Interview. As you know (since you are reading this blog), I do enjoy sharing personal experiences with our patient community in the hopes that I may say
(or write) something to help another patient. So I was happy to participate!