Shower of Joy
A video I made celebrating my first real shower in 9 months after dialysis.
Hi remarkable readers! When I got my dialysis port out, I began documenting my journey on TIKTOK- here is a video commemorating my first shower.
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When you’re on dialysis with a chest port or permacath, you’re only permitted sponge baths. So for all those who don’t appreciate their showers- have a moment of gratefulness as the water hits your shoulders for all the people who can’t.
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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 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.
This is so humbling. It's the little things in life that bring us the most joy. Thanks for another great post, Taylor!
Brought tears to my eyes. A huge milestone! A shower is something most everyone takes for granted-until it’s taken away. 👏💜