In honor of Dysautonomia Awareness Week, I compiled a comprehensive list of resources for patients to turn to, especially those newly diagnosed. I know when my electrophysiologist first mentioned POTS, he sent me to the POTS Place website. From there I ventured onto Wikipedia and YouTube where I was relieved to find other people talking about this seemingly rare condition. The whole disgnosis thing was a little less overwhelming with resources to turn to. So, without further adieu, here is a list of resources I have turned to at one point or another:
Online Resources:
There are also multiple personal YouTube pages worth checking out! Too many to list here!
Personal blogs on Dysautonomia and POTS are also great reads.
Facebook.com
-Demystify Dysautonomia
-12 More Pages
-The Faces of Dysautonomia
-The Dysautonomia Connection
-The Spoon Theory
-5 Awesome Potsies
-Living with Bob (Dysautonomia)
In-Person Resources, visit your local:
-Chiropractic Office
-Massage Therapist
-Physical Therapist
-Acupuncturist
-Naturopath
-Internal Medicine Doctor
-Cardiologist or Electrophysiologist
-Neurologist
-Endocrinologist
-Sleep Medicine Specialist
-Nutritionist
-Personal Trainer or Cardiac Rehabilitation Specialist
-Psychologist or Psychiatrist
-Hair stylist (to vent to!)
Yes, this list is overwhelming. And if you hate appointments as much as I do, you know what a mentally and physically draining chore they can be. However, assembling a strong team of specialists to call upon when needed is a helpful thing. When dealing with a complex illness like dysautonomia, it seems no one doctor can singlehandedly manage every symptom. Thus they refer you on to another doctor. And on. And on. Until one day the appointments finally slow down, and the doctors (if they are nice) may be reached via phone or email with questions or non-emergency concerns. My best advice is when you find a doctor that you click with, whether they are a chiropractor or a cardiologist, stick with them even if they are not a dysautonomia expert. If they are willing to listen to you, conduct some simple research and not "dysmiss" you, then chances are they are someone worth having on your team. What we all need are allies who will go to bat for us when the going gets tough (I am just full of cliches tonight!) I am not just talking about medical doctors and professionals here. One of the most helpful things for me has been building a solid network of friends and fellow sufferers to gain support and strength from. Facebook is a great place to start. There is also a program called "Meet Others" available through the DINET website.
Special thanks to talented graphic designer Rachael Rodriquez for creating the special Dysautonomia Awareness Week poster pictured above!
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