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! (more…)
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…)
We’ve all heard it… You don’t look sick! When you live with an autoimmune disease, this comment is common. How do you react and then respond?
There are times when I’m happy to hear this comment and times when I’m displeased. I do have a prepared response for this statement, but it doesn’t always fit my emotional or intellectual needs at the time. I hear the comment often enough (and I know you do as well) that I thought it a worthy topic to explore. My hope is that this article gives you ideas to help you craft your best response for any situation.
I believe there are a number of factors to consider when determining the best response to You Don’t Look Sick. Consider your:
- Disease activity level.
- Emotional status.
- Time since diagnosis.
- Relationship to the person.
Each time someone tells you that you don’t look sick, you need to examine your answers to all of these questions and ask yourself the ultimate question:
Why do you care?
I am so proud to lend my story for this major US news article! The Sjogrens Foundation was able to attract the attention of the Health and Wellness Editor and get Sjogrens in US News & World Report!
The name of the article is Sjogren’s Syndrome: The Most Common Autoimmune Condition You’ve Never Heard Of by Anna Miller of US News & World Report.
I am so relieved that it is 2017! I am happy to say that I am feeling my usual self today. But it was hard work getting back to emotional and physical status quo — because the last four months of 2016 was absolute shit!
This blog post is about how the emotional stress of a major life event collided with my Sjögrens, caused a major Autoimmune Disease relapse, and what tools I used to pull myself back up to my usual state of normal. I also, now, have a game plan for the next major life event!
My friend Sarah Schafer, a Sjögrens patient and an MD, wrote a message on the Sjögrens List Serve that I thought should reach a wider audience. Her thoughts on autoimmune fatigue are valuable and her personal experience with fatigue echo the experiences of so many Sjögrens warriors! I also have fatigue and mostly give up social activities in the evening so that I can work most of the day (not a quality-of-life choice I like). So I think I will look more closely at these tips from Sarah…
Sjögrens fatigue – and all autoimmune fatigue – is a clinical conundrum. No one really knows the cause, although there is some interesting research being done by a neuroscientist in Alabama who may shed some light on the underlying cause soon.
Fatigue is unrelated to blood tests (e.g.- sed rate, SS-A) etc, or even severe organ system involvement. The study I posted recently (article titled, “Fatigue in Sjögrens: A Paradoxical Response. Decreased pro-inflammatory cytokine levels tied to higher levels of fatigue”, by researcher Wan-Fai Ng from the UK) showed a surprising inverse correlation with fatigue and some inflammatory chemical levels in the blood. This is the opposite of what you would expect, which goes to show, we really don’t know. Fatigue is a prominent symptom in Sjögrens (70% disabling) and other autoimmune diseases.
Fatigue is my worst symptom. It is what most keeps me from having a better quality of life, despite many other serious symptoms.