I am pleased to announce the new SjogrensLife website! It took me a bit longer than I expected to design, but a website (instead of blog-only) is necessary. I will now be able to offer some of the items that I am passionate about bringing to you. I had fun creating it and choosing bright colors to lift up our spirits.
Think of the new SjogrensLife as our “Autoimmune Disease Lifestyle” home. It’s not the lifestyle we wanted, but it’s the one we have! And I want us all to make the most of our lives! The tagline has stayed the same ” Navigating Life with an Autoimmune Disease” but the offering has expanded. With this new format, it will be easier to find product ideas, resources, lifestyle choices, and blog posts that address what you are seeking. And if something is NOT on the site, please do let me know what interests you.
Let me take you through some of the highlights of the site…I hope you like it! (more…)
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!
As a Sjogren’s patient who writes a blog and is very involved with the Sjogren’s Foundation, I get asked a lot of questions. But since I also have a full-time job and other commitments, I am not able to answer everyone’s questions and support other patients on a daily basis. Recently, I was asked about hair loss. This is a common issue with some of the drugs we take to control Sjogren’s, and it can really impact self-confidence. Because I am unable to answer everyone’s questions, I am writing this blog to tell you how you can connect with other patients to share ideas. This post is dedicated to my reader who asked for support on hair loss! She had the right idea — connecting with Sjogren’s patients is how we can learn to live well with chronic disease!
The Sjögren’s Foundation has produced a video series on Sjögren’s disease called Exploring Sjögren’s. If you have not seen the YouTube channel, Exploring Sjögren’s, you really must take a look! The channel is the brainchild of Steve Taylor, Sjögren’s Foundation CEO and Brad Lemack, a fellow patient, great guy, and artist’s agent. In other words, Brad knows a thing or two about making videos! This past Fall/Winter the planning and footage was shot and post-production followed. Take a look … (more…)
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.