How Do You Spell That? Rare Disease Podcast

Taylor is the first guest of their new season

Hi Readers, If you feel so inclined to hear me talk, give a listen to the newest episode of Patientworthy’s rare disease podcast. It was wonderful chatting with Colby about life with a new diagnosis and a new baby.

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Reader Comment of the Week

“God bless the pelvic floor therapists.” Sarah Gilbert

If you’re new here and wondering, “what happened to this lady?” read The Fighter Still Remains Part 1. xo

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. I hope to include excerpts here as I write. NOTE: This is not intended to replace actual medical guidance. Please consult your doctors on your individual challenges and situations. Also names have been changed for most of my medical staff.

Thank you Heidi Hilliker for joining as a paid subscriber. I miss you, birthday twin!

Thank you to Roy Lenn and Richard Burwick for your founding level donation.

Rare Disease Girl is a reader-supported digital atlas for navigating life’s inevitable challenges: personal memoir, illness, parenthood, and health systems. Both free and paid subscriptions are available. If you would like to support my work, the best way is by becoming a paid subscriber. Thank you for being here.