100 Rare Disease Girl Posts!
My favorite "Hacks" for living with medical challenges
Hi Substack family,
When I began writing here, I wasn’t sure I could keep it up. Life with a disease and a two year old is already a challenge, but I’ve found the more I give to this project, the more I receive. Thank you for being the fuel.
Here’s a special discount for a membership with access to all the archives:
Don’t Miss These Life Hacks
Being biologically human is not easy. Here are some posts from the archives about navigating life with a medical challenge.
Share some hacks with me! What are some tips you’ve learned from navigating life challenges?
NEWS - Taylor on the Pods!
I’ve been making the rounds on podcasts lately. Don’t miss my episode of Wait How Do You Spell That?
I was also a guest on Primary Care Cures. Here’s a little except with such kind words from the amazing author of REBEL HEALTH, Susannah Fox.
I’m on Rare Together - a podcast for and about folks living with Rare Disease.
A Happy Easter Season Story
If you’re new here and wondering, “what happened to this lady?” read:
I started writing this when I was on dialysis. It’s intended to be both memoir and a practical tool to help folks who might be going through something similar or those caregivers and family supporting someone with a challenging diagnosis. NOTE: This is not intended to replace actual medical guidance. Please consult your doctors on your individual challenges and situations. Please talk to your clinicians before adjusting any of your care protocols. Also names have been changed for most of my medical staff.
Thank you to Roy Lenn for your founding level donation.