- 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.
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?
Last Friday and Saturday I was in Virginia at the Sjögrens Foundation May board meeting. The Board of Directors comes together for our live meetings every May and December (with conference calls throughout the year). The Board is comprised of healthcare professionals in a variety of disciplines (Rheumies, Ocular, Oral, Researchers), a disability attorney, caregivers of patients, and patients. The amazing staff of the Foundation joins for much of our meeting to present achievements and challenges and to discuss goals.
The 2017 spring meeting was particularly rewarding and I’m honored to be a member of the Board representing patients! In fact, it was so impressive that I want to share what the foundation has accomplished for us (the patient).