A new nickname for my journey…I love it!
Yesterday morning while catching up with my son on life, I told him that I had finished an interview with Standing Up To POTS for an upcoming podcast as a “caregiver”.
He told me that was really, really cool and that it’s like I’m becoming “Mrs. Pots” from Beauty and the Beast….I immediately wanted to change my profile picture to her and absolutely adore him for saying that. (I also didn’t realize her name has 2 “t”s in it)
POTS is one of the first things on my mind when I wake up, and also one of the very last at night
I’m not sure why POTS has become such a passion for me to talk about on social media. Perhaps it’s out of frustration from observing this journey over the past 6 years, helplessly at times, and there is very little that I can do other than support.
And how early in our journey there were an awful lot of accusations questioning her mental health, mostly because health professionals in this geographical area had absolutely no clue what they were dealing with and didn’t want to admit it.
Rather than focus on our current situation, I’m trying to shift over to more of a voice for her and other patients that I have met through social media and my Page. I have done this by participating in volunteering bipartisan calls with Representatives in my district through Rare Disease Legislative Advocates. During these calls, I am able to advocate with a group for them to push through Bills for the Rare Disease Community. Through the beauty of the last call, I shared Emily’s story with others that had not heard about POTS and advocated for them to extend Telehealth beyond the public emergency. This went on to be signed by President Trump.
I am looking forward to completing more of these calls and finding other advocacy groups that tackle these issues for our community. It is despicable what patients must go through to receive compassionate quality care in the ER’s, and support from government programs. Not everyone has someone to advocate for them. The State of Pennsylvania believes that Emily will get better in 3 years….we need so much awareness about POTS! 😤
Standing Up To POTS: https://www.standinguptopots.org/