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Confessions of a Rare Disease Mama

Confessions of a Rare Disease Mama

By: Jillian Arnold
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Join me every week as I navigate the ups and downs, and everything in between of the crazy stressful, but always beautiful life of being a rare disease parent.

© 2025 Confessions of a Rare Disease Mama
Hygiene & Healthy Living Parenting & Families Personal Development Personal Success Physical Illness & Disease Relationships
Episodes
  • Letting go of the "shoulds" of the holiday season
    Dec 8 2025

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    The holidays can feel magical... or overwhelming. For parents of children with medical complexity, special needs, or chronic illnesses, the season often comes with invisible burdens and unspoken expectations. In this episode, I talk about the weight of the “shoulds” we place on ourselves: the traditions we think we have to do, the perfect holidays we imagine, and the grief that surfaces when reality doesn’t match our expectations.

    Together, we explore how to:

    • Acknowledge the grief without letting it steal joy.
    • Release the pressure of “should” and embrace imperfection.
    • Find moments of magic in the ways your family actually celebrates.
    • Carry the invisible weight of 24/7 caregiving with compassion for yourself.

    Whether you’re navigating medical equipment, illnesses, missed traditions, or just the stress of a busy holiday season, this episode is for parents who are learning to show up as their best selves — even when it looks different than expected.

    How to purchase your signed hardback copy of Soaring Together in time for the holidays:

    • Email confessionsofararediseasemama@gmail.com with subject "Holiday Order"
    • Please include: how many copies you'd like, who you would like them signed to, mailing address, and the best form of payment for you (I accept Zelle, Paypal, or Venmo)

    If you aren't necessarily looking for a signed copy, you can always purchase through amazon or barnesandnoble.com

    Shop my brand new merch designs- the perfect holiday gift for the caregiver in your life!

    Resources & Links for this episode:

    • Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop
    • Learn more about our brave warriors: saveromanandstella.com
    • Support our family: GoFundMe
    • Follow us!
      • Instagram: @confessionsofararediseasemama
      • TikTok: @rare_mama
      • Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
    • Get your FREE Positive Affirmations for the Medical Parent PDF here!
    • Shop our ...
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    31 mins
  • Life Lately/Catch up: Road Trips, School Days & Real Talk with My Husband
    Oct 21 2025

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    After a four-month break, we’re back and catching up on everything! In this episode, I sit down with my partner-in-crime (and life), Donald, to chat about what life has looked like lately for our family. From three back-to-back road trips (yes, we’re still recovering!) to the kids starting in-person school for the first time, it’s been a season full of change, growth, and plenty of stories.

    We open up about:
    🚗 The three road trips that (at times) tested our sanity, but also brought us so much joy
    🎒 What it’s been like transitioning the kids to in-person schooling
    💬 How we’re managing caregiving, marriage, and everything in between

    It’s a real and lighthearted catch-up episode- just us, talking about where we’ve been, what we’ve learned, and how we’re finding our rhythm again.

    Welcome back, Rare Mamas (and Dads!). I’ve missed you, and I can’t wait to reconnect. 💛

    Shop our all our travel accessories on my Amazon Storefront

    Resources & Links for this episode:

    • Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop
    • Learn more about our brave warriors: saveromanandstella.com
    • Support our family: GoFundMe
    • Follow us!
      • Instagram: @confessionsofararediseasemama
      • TikTok: @rare_mama
      • Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
    • Get your FREE Positive Affirmations for the Medical Parent PDF here!
    • Shop our ...
    Show More Show Less
    50 mins
  • BONUS EP: What to do when the world feels like too much
    Jun 26 2025

    Send us a text

    Ever feel like the world is just... too much? Whether it's the endless news cycle, the weight of caregiving, or just the everyday overwhelm, you’re not alone. In this episode, I’m opening up about what happens to our nervous system when we’re overloaded—and sharing simple, accessible grounding techniques that can help bring us back to center.

    I’ll walk you through practical ways to regulate your body when it’s in survival or burnout mode, including:

    • Getting outside and standing barefoot in the grass
    • Using breathwork to calm your system in real time
    • The power of cold water exposure (yes, even a quick splash!)
    • Why small sensory shifts can create big emotional relief

    This isn’t about pretending everything’s okay. It’s about learning how to stay rooted even when it’s not.

    Whether you’re a medical mama, a rare disease parent, or just a human trying to stay grounded in an unsteady world—this one’s for you.

    Take a deep breath. You’ve got this, mama.

    Resources & Links for this episode:

    • Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop
    • Learn more about our brave warriors: saveromanandstella.com
    • Support our family: GoFundMe
    • Follow us!
      • Instagram: @confessionsofararediseasemama
      • TikTok: @rare_mama
      • Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
    • Get your FREE Positive Affirmations for the Medical Parent PDF here!
    • Shop our ...
    Show More Show Less
    27 mins
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