Resources
Blogs
- The Dysautonomia Dispatch (Dysautonomia International’s blog)
- Living with Bob (Dysautonomia)
- POTSgrrl (no longer updated, but still full of great info)
- The Sick Chicks (general chronic illness female rockstar positivity led by the outstanding Shira Strongin)
- With a Side of Salt: POTS Support
Facebook Support Groups
- Teens with Dysautonomia (ages 13-18)
- POTS (all ages)
- POTS in College
Stores that donate to dysautonomia
- Bravelets
- Fighter Wear
- smile.amazon.com (choose Dysautonomia International!)
Websites
- Dysautonomia International
- Dysautonomia Information Network
- Ehlers-Danlos National Foundation
- Vanderbilt Autonomic Dysfunction Center
Some of my favorite posts & articles
- Ehlers-Danlos Syndrome massive list (via spoonsandstripes)
- Disabled people are not an inconvenience (via Harper’s Bazaar)
- Harder than MIT: Living with postural orthostatic tachycardia syndrome (via The Tech/Sarah Mendelowitz)
- How to be comfortable & safe in the hospital (via POTSgrrl/Lauren Stiles)
- How to find the right therapist (via The New York Times)
- How to appeal a health insurance denial (via The Wall Street Journal Guides)
- How to talk to your practitioners about your physical pain (via Illness to Wellness)
- On wasting my time – The numbers (via Jess Jacobs)
- Please pass the salt (via Dysautonomia International Blog)
- POTS Clinical Pathway (via Children’s Hospital of Philadelphia) — this is an excellent resource!
- Principles of Autonomic Medicine by Dr. David Goldstein (via Dysautonomia International)
- The Spoon Theory (via But You Don’t Look Sick)
- Supercook: recipe search by what ingredients you have at home
- Quick and dirty guide to picking a therapist (via Emily V Gordon)
- This is what it’s like to try and get diagnosed with an invisible illness (via BuzzFeed)
- You Feel Like Sh*t: An Interactive Self-Care Guide
- 8 things to remember when you feel broken inside (via Power of Positivity) – my therapist sent this to me in a time of need and #7 really resonated with me