Sjogren’s and Hydroxychloroquine — Your Voice is Needed!

Sjogren’s and Hydroxychloroquine — Your Voice is Needed!

Lately, I have been writing a lot about the Sjogren’s Foundation and programs that are being created for patients. As Board Chair, I love to share my experiences and knowledge with you, and the pandemic has heightened my need to communicate. Today, I am asking you to complete the Sjogren’s Foundation Survey on Sjogren’s and Hudroxychloriquine use (and use of other anti-malarial drugs to treat Sjogren’s). Whether you currently take anti-malarial drugs or not, and if you reside in the US, please do take the survey! It will help patients enormously!

In this article, I talk more about the need for information on Sjogren’s and Hydroxychloroquine, and I offer a few other thoughts on why I write. Soon, I will be writing more about some of the challenges we face as patients, and some ideas to help us live a productive and meaningful life. But lately, and until the National Patient Conference is completed, the Sjogren’s Foundation is top of mind!

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The 2020 Sjogren’s National Patient Conference — Virtual and Affordable!

The 2020 Sjogren’s National Patient Conference — Virtual and Affordable!

This is a quick post to get you excited about the Virtual 2020 Sjogren’s National Patient Conference! I’m excited to emcee and present and I hope to “see” you there!

If you are a member of the Sjogren’s Foundation, you already know that the 2020 National Patient Conference was rescheduled for June 26-27th from April. And you also know that the conference has now become a VIRTUAL conference! This is an amazing opportunity for all Sjogren’s patients to receive updated and new information about Sjogren’s. This is also an opportunity for non-members to learn as much as you can about Sjogren’s.

Although I am very sad to miss the LIVE conference, I think it is pretty amazing that the Foundation has created a new way for patients to congregate and get as much information as we can about our disease. It’s also a great way to get ideas on how to live a better life with our disease. Although it is truly inspiring to be in a room with 450 other people who know exactly what it’s like to live with Sjogren’s, I might be even more excited that many more patients can attend a virtual conference.

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Building Resilience with Meditation and Mindset Exercises

Building Resilience with Meditation and Mindset Exercises

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!

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My Sjogren’s Strong Podcast Interview

My Sjogren’s Strong Podcast Interview

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!

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Rheumatic Disease Report Card: America’s Failing Grade

Rheumatic Disease Report Card: America’s Failing Grade

The American College of Rheumatology (ACR) has created an organization called Simple Tasks in order to help us live well. Last month, they released the 2018 Rheumatic Disease Report Card. As Chair of the Board of the Sjogren’s Foundation, I’m fairly knowledgable about rheumatic diseases and the status of healthcare, but even I was shocked at how poorly US States faired in this report.

“Living Well” is the battle cry of chronically ill patients, as in  I am Living Well with Sjogren’s Disease (or I want to Live Well with Sjogren’s). Living well is our greatest hope and our goal.  It is also the directive from the non-ill people in our lives: our family, our friends, our disease associations and our doctors.  After reviewing this report, I really have to ask:

How the hell are we supposed to live well when even the ACR gives America an overall C grade on disease care and an F on affordability? Subpar care cannot support a well-lived life!

No wonder we struggle!

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