Resources For Living With Sjogren's & Dysautonomia
PREPARING FOR AND GETTING THE MOST OUT OF YOUR DOCTOR'S APPOINTMENT
How to get the most out of any medical appointment - "Becoming Immune Confident" Podcast, Episode 91, by Dr. Kara Wada, an immunologist living with Sjogren's
Prepare for your next appointment using Dr. Kara Wada's Premedical Appointment Form
The Self-Advocacy section of Sjogren's Advocate offers tools, and strategies for working with clinicians.
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SJOGREN'S & DYSAUTONOMIA CARE, SELF-ADVOCACY, & RESEARCH
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.
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.
The Autoimmune Registry Inc. (ARI) is a hub for research, statistics, and patient data on all autoimmune diseases. It aims to track prevalence/incidence, epidemiology, and longitudinal data on all autoimmune diseases, similar to the role of the National Cancer Registry for cancer patients in the US. Currently, ARI aggregates information on all confirmed and suspected autoimmune diseases (including long Covid) and their comorbidities to help researchers identify trends and gain a deeper understanding of this complex class of conditions. To join the registry, please visit www.autoimmuneregistry.
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HEALTH CARE GIVERS
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 is my dentist and 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.
Centered Chiropractic is run by Dr. Shaina Lewinski, a talented and compassionate chiropractor who also does nutrition counseling. I was experiencing major issues with digestion and hormonal imbalance when I met her, so much so that my functional medicine doctor had me on a slew of supplements and bio-identical hormones that he said I would have to take for life. Unhappy with that outcome, I chose to work with Dr. Shaina instead. I no longer take a slew of supplements and my hormone levels are in the normal range.
Neupathways taught me a simple technique that I use frequently to manage my chronic pain. Neupathways was designed by Dr. John Leonard for you to learn pain control on your own. If you need assistance after trying out this learning aide, Dr. Leonard is happy to provide training services for free by telephone. He can best be reached at leonard@bepainfree.net or neupathwaysjl@gmail.com.
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NUTRITION & GUT HEALTH
Homestead Oven bakes and sells the most delicious, gluten-free sourdough bread; it has the texture and feel of bread made from wheat. I can have sandwiches and toast again without feeling like I'm missing out. Homestead Oven ships across the US and the loaves ship well.
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.
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SKIN CARE & HEALTH
Who Is Responsible For Substantiating The Safety Of Cosmetics? You Are.
Anti-aging, Peptides, And Health
Clean Beauty: As Safe As The Wild West
Schedule a free 15-minute skin care consultation with Bexi.
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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 teaches the RAIN method for examining emotions. Her lectures and meditations on compassion, radical acceptance, self-love and forgiveness are very helpful.
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WORKSHOPS, PODCASTS, & BLOGS
Virtual Sjogren's Summit 2023, check out my online workshop on Sjogren's and skin care here.
“Stronger Than Autoimmune” Podcast check out my guest podcast episodes and stay tuned for a series of 10-minute videos I'll be doing on Sjogren's, skin health, and skin care.
Hell's Bells and Mast Cells helped me understand mast cells and how to manage them.
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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.
Success With Sjogren's is a positive and supportive online group for people with Sjogren's. Founded and run by Dr. Kara Wada, an immunologist living with Sjogren's.
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SOCIAL MEDIA ACCOUNTS
Twitter: @neurosjogrens, @SarahSchaferMD, @Sjogrens_Speaks, @dysclinic
Follow me on Instagram, Facebook, Threads, & Twitter: @bexiphd