Last weekend was a jam-packed weekend of Sjogrens love and support! Not only was it the Fall Sjogrens Foundation Board Meeting, but Team Sjogrens was in full force at the Las Vegas Rock-n-Roll Marathon.
The 31 participants of this Team Sjogrens Raised over $47,000 for the Foundation and broadened our message. That’s a big woo hoo for several reasons:
- The Team had the largest participation to date with 31 runners in the 10K, 1/2 marathon and marathon. We are growing with Sjogrens patients, and friends and family of patients who run for those they love.
- The $47,000 raised is by Team Sjogrens will go to help support patients and educate medical professionals to better understand Sjogrens.
- Our team t-shirts brought awareness to the general public. So many people asked us about Sjogrens or shared that they know someone with Sjogrens.
As many of you know, I am a patient whose life has changed because of Sjogrens. So WHY did I do this 10K…and HOW did I do this 10K?
Continue reading “Team Sjogrens’ Results at Las Vegas Marathon”
I am currently in the process of finding a rheumatologist and it’s not fun. For the past ten years, I have had the privilege of being cared for by one of the world’s top Sjogren’s Rheumatologists — Nancy Carteron, MD, FACR. It has been such a luxury to step into a doctor-patient partnership with such ease.
Dr. Carteron has been a life-saver for me, and here is why:
- I never had to convince her that Sjogrens is a serious disease (she already knew that).
- She was the captain who steered my ship-of-doctors in the right direction for my medical care whenever a new concern developed.
- I was encouraged to face my denial when I was more ill than I wanted to accept, so I could make better choices.
- She introduced me to the Sjogrens Foundation and supported my Board seat. This has been a role that has given me great pride and fulfillment.
So my first decade of care from my rheumatologist was as good as it gets. Which is why I was so sad when she informed me that she was closing her practice. I will be searching for a new rheumy, but I now have an arsenal of knowledge to begin a new relationship (thanks to Dr. Carteron and the Sjogrens Foundation).
This post is a combination of my plan of attack to find a new partner-rheumy, as well as a thank you note to Dr. Carteron.
Continue reading “The Challenge of Finding a Rheumatologist for Sjogrens”
Last week I had the pleasure of watching Venus Williams play incredibly fantastic tennis in the US Open. It was exciting to see this world-class athlete, at 37 years old, show her competitors what a true champion looks like, in spite of having Sjögrens. It is uncanny to utter Venus Williams and Sjögrens Syndrome in the same sentence. Do I wonder how she can still be a top-level athlete and have Sjögrens Syndrome? You bet I do.
I am writing this post because many people have asked me, “Don’t you think Venus Williams is a bad role model for Sjögrens Syndrome?” And my answer is a resounding “NO”! I don’t know how she does it. She must work and focus exceptionally hard to keep her dream alive — harder than she’s ever worked before.
I do understand why people make this comment, though. Those of us who have this disease know how difficult it is to explain to our family and friends why we can’t push ourselves a little harder to join in…or even get out of bed. So many people don’t believe us when we say that Sjögrens Syndrome is a debilitating disease. And when Venus can kick ass, at 37 years old, with Sjögrens, it doesn’t really help make our case. I get it.
Continue reading “Venus Williams and Sjögrens Syndrome: Is She a Bad Role Model for This Disease?”
The past couple of months I have been working on vagus nerve stimulation in order to increase my vagal tone. By that I mean that I have been practicing different ways to activate my parasympathetic nervous system side of my vagus nerve. I have been doing this in order to practice better mindfulness and calm my anxiety and inflammation. My anxiety isn’t at a high level daily, but I do get quite worried about the long-term costs associated with having Sjögrens Syndrome. And I worry about my ability to continue working long enough to pay for future major expenses. I hate that feeling. And of course, I always have a high level of inflammation. I hate that too.
As I began to investigate the different methods to stimulate my vagus nerve and activate my PSNS (parasympathetic nervous system), I became more and more fascinated. This post explains why.
Or you can just stop reading now and start singing, loud and proud, like your favorite rock star! Continue reading “Can Vagus Nerve Stimulation Reduce Sjögrens Inflammation?”
Determining the best Sjögrens Syndrome products to use for dry eye, dry mouth, (and other challenges) is such a personal process. We all have varying degrees of challenges and different products work better for some people than others. But asking each other “What are your favorite products” is still one of the most common conversations I have with other patients. You never know when someone has tried something new that works for them and could also work for you!
This post is about the best products that work for me. I have focused mainly on some supplements and items for dryness. Addressing pain and fatigue will be a different post.
Take a look and see if some of these ideas might help you. And if you have tried products that you like even more, please do comment and let us all know about them!
Continue reading “Best Sjögrens Syndrome Products — My Daily Survival Kit!”