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.
How to create social media guidelines before emergencies occur
Here’s a little something to think about before misfortune strikes. I urge you to talk with your loved ones about social media during medical emergencies sensitively over dinner.
Introducing "Glimmer"
Like learning the term Post Traumatic Growth, glimmers are in beautiful opposition to “triggers” and something I felt happening to me even though I didn’t have a label.
Tips on how to be heard in a hospital
Don't feel like you're being heard? Here are some things you and caregivers can do.
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
Resurrection
Hi Readers, This photo is my first official moment of carrying July all on my own. I had her in January and wasn't cleared to carry her til April. We both look thrilled.
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.