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Hello beautiful RDG readers.
I’m about to embark on some summer travels, so posts may be a tad quiet for a couple weeks.
If you’ve got a road trip planned and like the sound of my voice, I’ve got a podcast for you.
For those worried about me in the wake of the passing of the budget bill, know your pal Taylor is incredibly resilient. It’s hard to keep me down. Like really hard.
It will take almost two years for much of these cuts to hit the hardest. For me the path ahead involves:
Advocating for politicians who care about creating legislation to support the vulnerable populations in this country.
Planting the seeds to support universal primary care.
Remember this happened, remind people this happened, repeat, and stay resilient.
Enjoy my life.
Reapply sunscreen.
I have been speaking more about this on my Instagram and TIKTOK if you engage there.
Thank Pod!
Recently I was a guest on On One Condition podcast talking about my disease onset and the story of my healing.
I’ve been making a list of my podcast guest appearances if you’re ever interested!
Also if you have a trip ahead with the kids take a listen to Smash Boom Best, and you’ll hear me with a very silly voice on most episodes.
And Zach has a podcast with AMAZING musical guests like Madeleine Peyroux, John Oates (Hall & Oates), Ani Defranco, Bahamas, Milky Chance, Smash Mouth, Keb Mo, Alison Russell and more!
What pods do you listen to and love?
Have you ever had a question for me? Maybe a burning curiosity or advice on a situation? Click on Ask Rare Disease Girl, ask an anonymous question, and I’ll respond to in a post.
COMMENT OF THE WEEK
"Enjoy every moment,enjoy every mountain on your vacation. I relistened to “BE” and watched the slideshow again. I got goosebumps! So beautiful and sad too: I got tears in my eyes thinking about what you all went through and smiled at where you are now. Though the road somewhat challenging, you are soaring free now and heading into clearer skies and pastures." Susan
Caregiving is hot - Taylor's latest pod appearance
I’ve got the perfect solution to the summer Sunday scaries, my amazing chat with the Fresh Story team.
If you’re new here and wondering, “what happened to this lady?” read:
Welcome to my disease. What is atypical Hemolytic Uremic Syndrome (aHUS) or Complement-Mediated Thrombotic Microangiopathy (CM-TMA)?
Hi, If you’re new here, I started writing a book six months ago 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 r…
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.
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