The Joy Tax Podcast

In this episode, Helena Perry offers practical insights into caring for a chronically unwell teen. She shares how using a wheelchair opened her daughter's world and the joy of watching her daughter go outside for the first time in a long while.  We also talk about self-care and how moms' lives change, too. She is an artist and acknowledges how hard it is to make art, and how a recent, exciting art...

In this episode, Helena Perry and I swap notes on the differences in accessing care in England versus the United States for teens with ME/CFS. Although the terminology differs, the bureaucratic challenges are similar. We talk about doctors, clinics, and educators, and how persistent parents have to be to make sure their kids' needs are met. 00:00 Introduction & Welcome 00:32 Navigating Care &a...

In this episode, Dr. Ilene Ruhoy discusses the new Neuro-EDS diagnosis from the paper she co-authored, explains the relationship between neurology and psychology, explains where functional neurological disorder fits in, discusses first-line interventions for kids and teens, and affirms the impact of chronic illness on the whole family. 00:00 - Introduction and Dr. Ruhoy's Pediatric Neurology Backg...

In this episode, Christine Braile, one of the moderators from the Facebook group Long Covid Kids-USA, discusses her family's medical journey, how knowing there are more treatments to try gives her hope, and the importance of pets in the lives of children and teens living with chronic illness. Produced by NAST Studios. Show Email: joytaxpodcast@gmail.com The content of The Joy Tax Podcast is strict...

Brooke Anderson shares her son's recovery story from Long Covid. She talks about her son's journey, the impact of severe chronic illness on the rest of the family, and how good health can feel fragile. She also describes the strain of watching well kids and healthy families, and the devastating isolation she experienced. Now that her family is on the other side, she values her bond with her son an...

In this episode, Dr. Elham Raker, a pediatrician and mother of a child with Long Covid, sheds light on the complexities of managing chronic illness in children. We discuss advocacy, navigating medical systems, and the emotional journey of families affected by Long Covid. Timestamps 00:00 – Introduction to the podcast and Dr. Raker's background 03:02 – The progression and phases of long COVID in he...

In the previous episode, Kimberly Burwick and I talked about our hopes for the start of the school year. At the start of spring break, we sat down to share how the last six months have unfolded for both of our families. Kimberly Burwick talks about the grief of another year mostly at home, and what it's like to have Child Protective Services show up at your door. I share my delight at my daughter...

At the start of the school year, Kimberly Burwick and I sat down to talk about our friendship, our hopes, and the judgments parents navigate when raising children with a complex illness. She discusses the value of developing support systems and the importance of ensuring our kids are not forgotten. Kimberly Burwick is an educator and the author of six collections of poetry, including Brightword an...

Sallie Rediske discusses pacing with kids and teens, the damages caused by the PACE trial, and what it was like to navigate ME/CFS since childhood--long before she had a diagnosis or language for what she was experiencing. She also describes the fears families face when they are accused of being complicit in their child's illness. Sallie holds a Master of Physical Therapy and had a robust private...

Becky Diamond is the mom of a son with Long COVID. In this conversation, she talks about the reality of isolation, the ongoing work of advocating for her teen, and what it means to be a "good mother" in impossible circumstances. Becky Diamond is an adjunct professor for NYU, a contributing writer to Psychology Today, and a former war reporter. You can find her articles here:  https://www.psycholog...

Suzan Jackson is a seasoned voice of wisdom for parents raising kids with ME/CFS and related illnesses. In this conversation, she shares what it was like to be diagnosed with ME/CFS, and then shortly thereafter to have both of her sons begin exhibiting symptoms. She offers parents valuable insights on navigating school systems, the complexities of gratitude, and the thrill of watching her kids gro...