What does it mean to rebuild your life when chronic illness topples everything you once held steady? Sara Batchelder and I share our experiences of living with chronic migraine, the grief of losing old versions of ourselves, and the surprising gratitude we’ve found along the way. With Jenga as a powerful metaphor, Sara offers insight into the daily decisions, trade-offs, and small triumphs that come with life in a body that doesn’t always cooperate.

In this episode:

• The Jenga of chronic illness: what falls, what stays
• Living with loss while still finding peace
• Letting go of expectations (and why that’s not giving up)
• The mental and emotional weight of invisible illness
• The power of community
• Creating a life that works with migraine

Resources mentioned:

• Headache on the Hill https://allianceforheadacheadvocacy.org/headache-on-the-hill/
• Miles for Migraine https://www.milesformigraine.org/
• Headache Centers of Excellence https://www.va.gov/minneapolis-health-care/programs/headaches/
• Clusterbusters https://clusterbusters.org/

In this episode, Kim talks about what it’s really like when you’re not just dealing with your own migraine - you’re also trying to help your kid through it. She shares how hard it was to be taken seriously, the fight to get her child the care they needed, and what it’s like to be a parent in advocacy mode while living with chronic pain herself. It’s an honest and emotional conversation about parenting, pushing for answers, and finding strength in the middle of it all.

Kim opens up about:

When her child started showing signs of migraine

The frustration of not being believed by doctors

What it took to get school to take it seriously

Living with migraine while parenting through it

The strength it takes to keep pushing for answers

This episode is for every parent who’s ever had to fight twice as hard—for their child and themselves.

Resources mentioned:

Pediatric, Teen & Young Adult Migraine & Headache Disorders Parent Support

https://www.facebook.com/groups/pediatricmigraineandheadachedisorders

Ainslie Course, President of Clusterbusters, shares her personal journey with cluster headaches and how it led her to advocacy leadership. She shares what it’s like to live with cluster headaches, a condition often described as the most painful disease known to medicine. We talk about the urgent need for an accurate diagnosis and what it means to work with a doctor who truly listens. Ainslie also talks about what Clusterbusters is doing to make a real difference through research, education, and support for people living with cluster headaches.

Whether you're living with cluster headaches or trying to better understand it, this conversation offers insight, hope, and practical guidance.

Resources:

• Clusterbusters website: https://clusterbusters.org
• General inquiries: info@clusterbusters.org
• Contact Ainslie directly: ainslie.course@clusterbusters.org
• 20th Annual U.S. Patient Conference, September 11-14, 2025, Grapevine, TX