Resources For Living With Sjogren's
PEOPLE LIVING WITH SJOGREN'S (SHOW-grins)
Smart Patients is an online community of people with Sjogren's who can provide support, resources, and/or answers to almost all your questions regarding living with Sjogren's.
Sjogren's Advocate is a treasure trove of detailed information about the diagnosis and care of Sjogren's and how to advocate for better medical care.
LOCAL PRACTITIONERS (DAVIS, CA)
Bingham Dentistry (formerly Howard Shemp's dental practice) is knowledgeable and open to learning about how to properly care for the oral health of people with Sjogren's. Dr. Elizabeth Bingham was the oral health expert panelist at the Sjogren's Foundation West Coast Virtual Walk for Sjogren's opening ceremony in 2022.
Joy Snipes is a gifted craniosacral and manual lymphatic drainage therapist specializing in clients with chronic depletion.
NUTRITION & GUT HEALTH
Cultured Guru is published by a microbiologist who teaches about fermentation and shares fail-safe recipes for successfully fermenting whole foods. Sjogren's causes gut dysbiosis so regularly eating lactofermented whole foods helps maintain a healthy, functional gut.
Laird SuperFood Hydrate Coconut Water is key to keeping me properly hydrated and managing my Sjogren's and dysautonomia. When I was first struggling ingest enough sodium while not depleting my other electrolytes in the process, I researched and tried many premade electrolyte mixes. None of them were satisfactory, because they were all mixes of electrolytes with stuff I didn't want: vitamins, flavors, colors, and sweeteners. I resorted to making my own mixes but that soon got laborious and expensive. I also knew that hydration from whole foods would be most effective because nutrients from whole foods are the most bioavailable and come in concentrations that we evolved to be able to handle well. But, drinking coconut water was inconvenient and expensive.
So, when I discovered Laird SuperFood Hydrate Coconut Water in 2021, I was excited. It's got only 2 ingredients: freeze-dried coconut water and seaweed-derived calcium and is the most cost-effective and convenient way that I've found to hydrate well and get calcium into me.
I've experienced a huge improvement in my quality of life while drinking Hydrate Coconut Water and have recommended it to everyone I know. This year the price went up drastically, making a product that is essential to my health and well-being almost unaffordable. Since I'd already been recommending the product to everyone I know, I reached out to Laird to be part of their Ambassador program. I have never endorsed a product before, however, Laird Hydrate Coconut Water is one I am happy to recommend because I believe in the philosophy behind how it is made and have experienced first-hand the huge improvement in my quality of life when I started using it. So I am confidently recommending this, and only this, Laird Superfood product. Use code BEXIPHD10 to get 10% off your purchase (code applies to anything you purchase on the site).
SKIN CARE & HEALTH
Choosing Skincare For Health
Schedule a free 15-minute skin care consultation with Bexi.
MENTAL, EMOTIONAL, & SPIRITUAL HEALTH
While there is no substitute for having a supportive community to help you deal with the grief that comes with losing life as you know it, these resources have helped me immensely.
The WimHof Method is the best way for me to relieve depression caused by chronic, systemic inflammation.
The Holistic Psychologist provides tools for meeting and knowing yourself.
Tara Brach provides fantastic meditations and lectures. The RAIN method for examining emotions is excellent.
WEBSITES & BOOKS
Sjogren's Foundation is where I found general information about Sjogren's and how I connected to the Sjogren's community at large.
Dysautonomia International for all things dysautonomia. Dysautonomia is perhaps the most common manifestation of Sjogren's and is rarely recognized by the medical community. This website was key to helping me figure out why I would frequently wake up nauseated and get lightheaded and dizzy when upright for more than a couple of hours.
The Dysautonomia Project book was incredibly helpful for helping me learn and teach my primary care physician (PCP) about dysautonomia. It's such a great book that I gave my PCP a copy.
SOCIAL MEDIA ACCOUNTS
Twitter: @neurosjogrens, @SarahSchaferMD, @Sjogrens_Speaks, @dysclinic
Follow me on Instagram, Facebook, Threads, & Twitter: @bexiphd