A Body Rebels: A Chronic Illness Podcast

My dad’s birthday is coming up, and I’m remembering the humor, presence, and ordinary pleasures of the father I lost when I was thirteen. He lived with Type 1 diabetes and heart disease, and after twenty years with sarcoidosis and my own experience of heart failure, I understand parts of his life differently. From an airport breakfast to a midnight disco, these memories bring me closer to the father I miss and the grown...

Living with chronic illness brings financial costs beyond copays and prescriptions. I spend hours untangling insurance denials, prior authorizations, confusing bills, and paperwork nobody counts as work. In this episode, I talk about the energy lost to phone calls, the anxiety of not knowing what I owe, and the frustration of having complex medical care reduced to codes on a page. I also explain why I believe specialized medical de...

After my metoprolol dose increased to 200 mg, my wife and I began noticing troubling short-term memory problems. I was forgetting conversations and searching for things I had placed somewhere only moments earlier. In this episode, I share what those medication side effects looked like in ordinary daily life, why they frightened me, and what happened after I called my cardiologist and changed medications.

This podcast is narrated usi...

Living with chronic illness changes what an ordinary to-do list means. My iPhone reminders might show a phone call, an errand, or a message, while leaving out the fatigue, brain fog, symptoms, recovery time, and decisions surrounding each task. In this episode, I look at chronic illness and productivity through the unfinished reminders waiting on my phone, and why a list never tells the whole story of what I did with my day.

This po...

I canceled my lung transplant evaluation after months of research, prayer, and conversations with my wife, but I still want active medical care. Living with sarcoidosis and heart failure has made treatment decisions deeply personal, especially when recovery would ask so much of both of us. In this episode, I share why I declined the evaluation, my fear of being misunderstood by my doctors, and the care I still want as I look toward...

In this episode of A Body Re-bells: A Chronic Illness Podcast, I respond to a listener living with pulmonary sarcoidosis, depression, family estrangement, and the loss of friendships after diagnosis. I talk about what friendship looks like when illness stops being temporary, why suicidal thoughts deserve immediate professional support, and what happened when one of my own friendships ended after I revealed how sick I was. I also sh...

On A Body Re-bells: A Chronic Illness Podcast, I tell the story of an injured mouse and Prince, my strong old cat who refused to look old. Prince was already in his late teens when our strange nighttime rescue unfolded. He later lived to twenty-one, staying strong through his final day. His goodbye changed how I remember the mouse and how I think about my own life. After twenty years with sarcoidosis, I find myself thinking less ab...

I’ve spent much of my life becoming good at things, from school to culinary training to massage work, yet skill never answered a harder question for me: what do I love for myself? Chronic illness filled so much of my time with appointments, symptoms, tests, refills, and research, I lost touch with parts of myself unrelated to survival. In this episode, I look back at old interests, childhood dreams, and music, then explain wh...

In my one hundredth episode, I end up in the emergency room after seeing blood in my urine during Labor Day weekend. I walk through the way I handled the night, from researching possible causes to arriving with twenty years of medical history ready on my phone. Somewhere between the CT scan and my medication list, I recognize a familiar pattern. Chronic illness taught me to prepare, anticipate problems, and reduce uncertainty. Thos...

My health has reached a point where pushing through no longer works. In this short episode, I explain why I’m ending Season Four early and taking the rest of September away from the podcast. I need my limited energy for treatment, appointments, symptoms, and the work of getting through each day. I also need space to experience this difficult period without turning every part of it into something productive. I’ll return ...

In this episode of A Body Rebels: A Chronic Illness Podcast, I talk about exercise while living with heart failure, sarcoidosis, and severe fatigue after movement. A walk feels good while I’m outside, then the real cost shows up at home through heavy legs, harder breathing, a shower, and the need to lie down. I still want movement in my life. I also need enough energy for my private-chef work and the rest of my day. I’m...

In this episode, I’m talking about ambiguous loss and the private grief of missing the person I was before chronic illness changed my body. An old pair of shoes, a photograph, or even a heavy kitchen tool can bring that earlier life rushing back. I explore how illness has changed my independence, work, relationships, and identity, and why accepting my current body doesn’t require me to erase who I used to be, deny what ...

I’m sharing what happened when a limping black bear crossed the road in front of me on a quiet drive through rural Connecticut. Watching that injured animal continue into the woods brought my own experience with chronic illness into sharper focus. I’ve spent years measuring strength by what I could once do, how quickly I could move, and how well I could hide the struggle. That bear gave me another way to look at determi...

I missed an episode this week, and there was a very good reason. My fifth attempt to come off prednisone after twenty years hit me harder than I ever expected. With methotrexate now being used as a steroid-sparing medication, I’ve managed to reach just 2.5 milligrams of prednisone, but the pain, nausea, edema and crushing fatigue have been brutal. I’m sharing what happened when I became so exhausted at work that even st...

When a chronic illness flare sends me back to bed with oxygen, physical exhaustion can quickly become fear about my future. I start wondering whether I’ll recover or whether my independence is slipping away permanently. I used to hide those fears from my wife because I thought I was protecting her. Now I understand that honesty means trusting her and remaining honest with myself. In this episode, I confront uncertainty, physi...

In this episode, I talk about a driver’s license renewal that turned into an unexpected panic at the DMV. One question on one form forced me to think about my AICD, heart medication, and the fear of losing the independence I count on every day. I’m looking at medical honesty, the cost of disclosure, and what happens when protecting my health suddenly feels tangled up with protecting my freedom.

This podcast is narrated u...

Why does time seem to move faster once chronic illness becomes part of your life? In this episode of Surviving Chronic Illness: Life In A Body That Rebels, I reflect on the strange speed of adulthood, the emotional weight of creating something personal, and why the word “peace” drew more attention than any medical term ever could. For people living with sarcoidosis, heart failure, rare disease, or any long-term conditio...

In this episode, I’m sharing what went through my mind after someone newly diagnosed with neurosarcoidosis told me that hearing my voice helped calm their fear. I’ve lived with sarcoidosis for twenty years, and during that time, my relationship with mortality has changed. I still want more life, more ordinary mornings, and more time with the people I love. But I no longer want fear of death to consume the days I’m...

In this episode, I talk about an email accusing me of sounding too positive to be believable. I’m looking at why hope doesn’t erase pain, why gratitude isn’t denial, and why sick people shouldn’t have to perform despair to prove they’re suffering. I share what fear, breathlessness, fatigue, medical trauma, and uncertainty actually feel like in my life, while explaining why humor and warmth are still al...