I generally hate New Year’s resolutions. I find the date to be arbitrary and I strongly believe that a person must be ready to take-on the impending change or discipline. It just so happens that this year, my readiness coincides with January 1st! I am ready to address self-sabotage and Sjogrens symptom activation because of it. But I still refuse to call this a “New Year’s Resolution”, when in fact I am aiming for a long-term commitment to my life.
I have tested several diets and exercise regimens throughout the years with the primary goal of losing weight and getting fit. The last diet I tried was the “Paleo” diet (animal protein, vegetables and fruit) coupled with a longer walking/hiking program and yoga. I not only lost ten pounds but I also felt so much better — greatly reduced pain and inflammation, no bloating or digestive issues, no brain fog, slept well through the night — I had forgotten what feeling (close to) normal was like.
And then it happened:
Hello self-sabotage, meet my Sjogrens symptoms.
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?
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.
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.
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! I have added Amazon links to this page as an Amazon Associate. This allows me to make a small fee if you purchase the product from my reference and link, without cost to you. I do this to help me with the costs of running SjogrensLife. I hope they help you as much as they help me! (more…)