Thoughts While Surviving Chronic Illness

BONUS EPISODE: From Pan To Pen: A Chunky Monkey Friendship Podcast Episode · Thoughts While Surviving Chronic Illness: Navigating Life With Sarcoidosis · February 21 · 11m

This is a bonus episode. A Story from my now closed "Pan to Pen: A Storytelling Podcast"

Living with sarcoidosis taught me this: the harder you work to stay “normal,” the more it costs. Portable oxygen promised freedom—until fine print, upsells, and pricey chargers. Breathing ≠ subscription.
#Sarcoidosis #ChronicIllness

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When Your Heart Throws a Tantrum and Your Doctor Ambushes You With a Flu Shot Living with heart failure and sarcoidosis means my heart sometimes behaves like an untrained sous-chef—dropping beats, burning the sauce, and sending everyone into panic mode. After a surprise fibrillation episode, some extra beats, and a cardiologist who ambushed me with a flu shot before I could protest, I’m trying to stay calm, breathe, and avoid yet another hospital stay.

When Your Heart Throws a Tantrum and Your Doctor Ambushes You With a Flu Shot

Living With Heart Failure And An AICD In 2007, a routine heart procedure turned into a life-changing diagnosis: heart failure. Nineteen years later, I’m still here—living with sarcoidosis, a defibrillator in my chest, and the constant awareness that my next heartbeat might depend on a tiny piece of metal and code. This is what surviv...

In 2007, a routine procedure became heart failure. 19 years later I’m still here—sarcoidosis, an AICD, and a metal box guarding each heartbeat. Miracle, nuisance, survival.
#HeartFailure #Sarcoidosis #AICD #ChronicIllness #Survivor

Living With Heart Failure And An AICD In 2007, a routine heart procedure turned into a life-changing diagnosis: heart failure. Nineteen years later, I’m still here—living with sarcoidosis, a defibrillator in my chest, and the constant awareness that my next heartbeat might depend on a tiny piece of metal and code. This is what surviv...

In 2007, a routine heart procedure became heart failure. Nineteen years later, I’m still here—living with sarcoidosis and an AICD, knowing my heartbeat may rely on metal and code. Miracle, nuisance, survival.
#HeartFailure #Sarcoidosis #AICD #ChronicIllness #StillHere

The Real Cost of Breathing: Portable Oxygen, Inogen, and the “Pay-to-Inhale” Price Tag. Living with sarcoidosis taught me a weird truth: the harder you work to keep your life normal, the more the system charges you for it. Portable oxygen was supposed to mean freedom—walks, errands, road trips, maybe even a little joy—until I met the fine print, the upsells, and the “special charger...

With sarcoidosis, the harder you work to stay “normal,” the more the system charges you. Portable oxygen promised freedom—until the fine print, and a “special charger” pricier than my microwave.
#Sarcoidosis #ChronicIllness #DisabledAndPaying #OxygenLife #HealthcareCosts

Wiping the Slate Clean: Why My Sarcoidosis and Heart Meds Actually Work Starting with a “clean slate” isn’t just an expression—it’s kind of my secret weapon in surviving sarcoidosis, heart failure, and the great prednisone weight gain saga. From resisting meds as a kid to relying on homeopathy and careful research now, I’ve learned that empowering yourself with knowledge, mindful eating, and a dash of common sense can make chronic illness just a little bit less chaotic. Here’s how I went from fighting every pill to trusting what my body truly needs—and why you might want to wipe your slate clean too. sarcoidosis

Wiping the Slate Clean: Why My Sarcoidosis and Heart Meds Actually Work

The Sinking Ship and the Whistling Chef: Sarcoidosis, Chronic Illness, and the Petty Art of Staying Afloat Someone decided my take on living with sarcoidosis was “too upbeat,” like I’m out here harmonizing with woodland creatures while my body runs a nonstop group project I didn’t sign up for. But if you’ve ever tried to stay afloat in chronic illness while strangers critique your coping skills, you already know the real story isn’t about pretending—it’s about refusing to let misery run the whole kitchen…

The Sinking Ship and the Whistling Chef: Navigating Chronic Illness with Sarcasm, Sarcoidosis, and a Side of Resilience

When the Bank Meeting Ended in a Truck Bed Ever wondered what happens when an 18-year-old bank manager gets peer-pressured into a “mandatory meeting” that turns out to be rum shots and card games? Here’s the messy, hilarious, and surprisingly life-defining story of my first and only time getting drunk—complete with spinning rooms, questio...

At 18, I thought I was going to a work meeting. Instead: rum shots, card games, my first (and only) time getting drunk, and a girlfriend who was NOT amused—yet somehow still married me. 🤷‍♂️
#Storytime #Podcast #Memoir #DarkHumor

Why My Kindle Will Always Win Over Physical Books As a chef, writer, and lifelong bookworm living with chronic illness, I’ve discovered that my Kindle isn’t just a gadget—it’s freedom. Between hospital visits, late-night writing sessions, and lazy Sundays with my pets, it lets me carry an entire library in my pocket without the weight or the gui...

Chef + writer + lifelong bookworm with chronic illness: my Kindle isn’t a gadget, it’s freedom. I carry a whole library in my pocket. #ChronicIllness #Kindle #Reading #BookSky #Writers #DisabledReaders #Spoonie #Sarcoidosis #HeartFailure #AmReading

•Why Gratitude Beats Complaining When Your ICD Is Busy Keeping You Alive Living with chronic illness brings sarcoidosis, heart failure, and an ICD that now syncs to my iPhone like it’s tracking my heart for a fitness challenge—but I’m grateful for the technology keeping me alive. This updated look at remote monitoring, reversed pulmonary hypertension, and modern cardiac care shows why complaining less and appreciating more can change everything.

Why Gratitude Beats Complaining When Your ICD Is Busy Keeping You Alive

Prednisone for Life: My Sarcoidosis Love Story I Never Agreed To Living with sarcoidosis means navigating prednisone side effects, adrenal failure, and the emotional chaos of a drug that saves your life while stealing your peace. After decades on prednisone—and four disastrous attempts to taper off—I’ve accepted that I’m on it for life, begrudgingly, impatiently, and with the kind of humor only chronic illness veterans understand.

Prednisone for Life: My Sarcoidosis Love Story I Never Agreed To

Prednisone, Diabetes, and the CGM That Smiled While Lying to My Face Prednisone and sarcoidosis have been in a long-term relationship with my body for years, and lately they’ve added a new plus-one: diabetes. So I tried a CGM for “easy” blood sugar tracking—because …

Prednisone and sarcoidosis have been in a long-term relationship with my body for years, and lately they’ve added a new plus-one: diabetes. So I tried a CGM for “easy” blood sugar tracking—because …

#sarcoidosis #heartfailure #diabetes #chronicillness #cgm

Silence, Sass, and Self-Control: How I Learned Not to Clap Back at Every Rude Receptionist Tired of rude medical staff and customer service that feels more like combat? As a private chef living with sarcoidosis and heart failure, I’ve learned that silence and self-control—not clapbacks—are my best defense against everyday negativity. Here’s how staying calm transformed my life, my work...

Tired of rude medical staff? As a private chef with sarcoidosis + heart failure, I’ve learned silence protects my peace. Staying calm changed my life, my work, and even led to a management job. #Sarcoidosis #ChronicIllness #HeartFailure #ServiceIndustry #PrivateChef

250 downloads

250 downloads! That may not seem like much but for me that is major! Thanks for listening!

#podcasts #chronicillness #thoughtswhilesurvivingchronicillness #sarcoidosis #life #survival #writing

thoughtswhilesurvivi...

When Shingles Leave a Souvenir: My Ongoing Battle With Post-Herpetic Neuralgia Living with chronic illness means collecting odd symptoms like souvenirs, but nothing prepared me for the nerve pain, phantom crawling, and burning sting shingles left behind. Here’s my long, winding, occasionally sarcastic journey with post-herpetic neuralgia, chronic pain, homeopathic experiments, and life with sarcoidosis—plus why an imaginary ant still runs laps on my face whenever it feels like it.

When Shingles Leave a Souvenir: My Ongoing Battle With Post-Herpetic Neuralgia

A very long tall staircase against a snowy hill. Caption reads “Staircase to the parking lot from Pulmonary Rehab. If you can climb this, your lungs graduate.“

#chronicillness #sarcoidosis #pulmonaryrehab #wtf #torture #justkillmealready

🤣

Love that show. Ella however does not seem the type to kill her humans 🤣

Why Self-Worth Isn’t Measured in Dollars: Finding True Value Beyond the Bank Account In a world obsessed with celebrity net worths and Instagram wealth, it’s easy to forget that our true value isn’t tied to money but to character, compassion, and integrity. As someone living with chronic illness, I’ve learned that self-worth has nothing to do with how much you earn—and everything...

Instagram wealth + celeb net worths are loud, but your value isn’t your paycheck. Chronic illness taught me: self-worth = character, compassion, and how deeply you live. 🎧
#SelfWorth #ChronicIllness #Sarcoidosis #HeartFailure #DisabilityPride

Today was so hot I had to take off my scarf. I’m not built for these balmy 29°F heatwaves. 🥵❄️

#WinterWeather #ColdWeatherProblems #NewYorkWeather #ChronicIllness #Sarcoidosis #HeartFailure #ChronicIllnessHumor #DailyLife #WeatherWhiplash #ScarfLife

I never thought editing my memoir would be fun, but… I’m genuinely loving it. Turns out revision is where the magic (and the chaos) lives. 😅✨

#Memoir #WritingCommunity #AmWriting #Revisions #Editing #WritingLife #AuthorLife #WritersOfBluesky

How I Outlived Every Cardiac Sarcoidosis Statistic (And Confused My Doctors in the Process) Living with cardiac sarcoidosis isn’t a five-year countdown—it’s a masterclass in ignoring terrifying survival statistics, baffling specialists, and learning how to live fully in the moment. After twenty years of sarcoidosis, heart failure, and even pulmonary hypertension that mysteriously reversed itself, I’m still here, still cooking, still sarcastic, and still proving that numbers don’t get the final say. sarcoidosis

How I Outlived Every Cardiac Sarcoidosis Statistic (And Confused My Doctors in the Process)

Pulmonary rehab: “We’re here to help your lungs.”
Also pulmonary rehab: a parking-lot staircase clearly designed by a supervillain. 😳

#PulmonaryRehab #PulmRehab #ChronicIllness #Sarcoidosis #HeartFailure #AccessibleDesign #DisabilityPride #HealthHumor #SmallWins #PatientLife

First day of pulmonary rehab: actually went pretty well… right up until the stair climber humbled me in two minutes. 😅 Still showed up, still did the work. We call that a win.

#PulmonaryRehab #PulmRehab #ChronicIllness #Sarcoidosis #HeartFailure #SmallWins #KeepShowingUp #HealthUpdate

Why Cooking Shows Might Be Ruining Dinner (and Your Sanity) If you’ve ever tried to recreate a TV chef’s “simple” dinner and ended up wondering if you accidentally auditioned for a survival show, you’re not alone. As someone juggling sarcoidosis, heart failure, and a full-time chef life, let’s just say I’ve learned exactly how misleading those glossy cook...

If you’ve ever tried a TV chef’s “simple” dinner and ended up in survival-show mode, same. I’m juggling sarcoidosis, heart failure, and chef life—those glossy cooking shows lie. And no, I’m still not over the raw chicken incident. #chronicillness #sarcoidosis

Riding the Energy Roller Coaster: Life With Sarcoidosis, Heart Failure, and a Body That Changes Its Mind Daily Living with sarcoidosis, heart failure, and a grab-bag of medications means my energy cycle runs on its own chaotic schedule. Some days I’m unstoppable; others I’m barely upright. Here’s how I navigate the ups, downs, and surprisingly emotional middle ground of chronic illness.

Riding the Energy Roller Coaster: Life With Sarcoidosis, Heart Failure, and a Body That Changes Its Mind Daily

Grieving the Old Me, Embracing the New: A Chronic Illness Journey with Humor, Heart, and Sarcoidosis Chronic illness can feel like a grief rollercoaster — denial, anger, and all the feelings in between. As someone living with sarcoidosis, heart failure, and a whole list of “don’ts,” I’ve stumbled my way through the stages of grief and found acceptance in the most unexpected places, like garden pots I can’t lift and reversible pulmonary hypertension. Here’s my real talk on surviving, adapting, and laughing through it all — with a side of stubborn positivity and sarcasm.

Grieving the Old Me, Embracing the New: A Chronic Illness Journey with Humor, Heart, and Sarcoidosis

Searching for Peace in a World Full of Self-Help and Sarcoidosis In a world overflowing with self-help books and symptom-specific blogs, what are we really searching for? As someone living with sarcoidosis, chronic illness, and a whole choir of organs trying to retire early, I’ve noticed that beyond the medical terms and hashtags, the word we’re truly chasing is simple: peace. My most-read post ever proved it.

Searching for Peace in a World Full of Self-Help and Sarcoidosis