hi new friends :) my name is galina. i just got diagnosed with hEDS over the holiday season. i went into stanford healthcare for a condition called Cyclic Vomiting Syndrome (CVS) and came out with a medication that helps to manage that. I also came out with the EDS diagnosis as well as a Postural Orthostatic Tachycardia Syndrome (POTS) managing all of this as a young adult has been extremely challenging. i feel like i am drowning and i’m trying to manage all of the symptoms, as well as try to move into my adult life. i work 6 days a week (i am a music teacher), i just got my permit test, and i’m trying to work towards being able to be independent. after a breakup i’m finding myself very lost in the healthcare world, as my previous partner was part of the healthcare team at stanford. i have found some support in wearing the “body braid” and it’s been working very well for me. i am trying to research the Cusak protocol, and adjust my activities so that working out is safe for my body. i also have an apple watch to help track patterns. i’m reaching out in hopes of finding support, friends and community. picture of my dog cloud for tax :) he used to be trained as a service dog but he hasn’t been able to go in the car i ride to work in due to the drivers request of no hair in the vehicle. i miss having him with me everyday.

Posted by galina nikolaeva at 2023-08-14 14:40:51 UTC