How Lyme Disease Stole a Decade —And What Came After with Diana Gordon

How Lyme Disease Stole a Decade —And What Came After with Diana Gordon

"I lost a decade of my life, but there was an afterwards. There are times when you don't know if you're ever going to get out of this, but keep on… My life at the moment is the fruit of everything that's come before. So, keep the faith, keep trying." —Diana Gordon When your brain won't stop looping through everything that's wrong, distraction isn't avoidance — it's medicine. That's one of the hard-won truths poet and novelist Diana Gordon shares in this episode of Dear Body, I'm Listening, after spending a decade navigating undiagnosed Lyme disease, neurological sleep disruption, and the particular grief of the world going on without you. Diana opens up about five years of dismissed symptoms before finally finding effective treatment, what the loneliness of chronic illness actually feels like from the inside, and the one friend whose phone calls every three days proved more healing than any support group. She also shares the unexpected story of how reading her unpublished novels aloud to a bedridden friend — someone living with a severe, rare pain condition — not only mitigated that friend's pain in real time, but reignited Diana's own creative life. Three books are now coming out as a direct result. Diana reads two original poems live in this episode: "Letter from a Long Illness" — a meditation on the invisible solidarity between people sick in separate rooms, written to every person who doesn't know if they'll ever get out of it. "Medicine in Mystery" — sparked by a Chinese acupuncturist who diagnosed her with demonic possession and prescribed dragons. She also talks binaural beats, the medicinal power of Netflix, and why conversation — just ordinary, everyday conversation — may be the most underrated healing tool there is. Diana's poetry book Loosestrife for Porcupines is available now at dmgordon.com. Her Substack, Leaf Sheep, delivers short animal poems to your inbox — perfect for interrupting the loop on a hard day. Poem 1: "Letter from a Long Illness" If you have been to this land as I have been, where I am now, You will know the chill fog. Know that the fig tree, so far from light, will not fruit. Maybe you are here, even as I write. Maybe you haven't escaped. We can't see each other — alone in different sick rooms of the same country, borders closed, pinned motionless. We did not meet at the atrium. You didn't complain your jeans were tight and choose the Reuben. I didn't use a matchbook to study a table leg. We don't do simple things here, where minutes are broken, and we can't make plans. Though you can't see or hear me, I'm writing on the faith that saying it keeps possibility alive, that it might not be too late for either of us to hike the prairie and collect sand spurs on our socks, to drive ourselves into thunderstorms. Not too late to stroll down Madison Avenue, admiring shirts displayed on seas of opalescent buttons. We might yet pass each other on the boardwalk, you in your tight jeans, shopping artisan stalls, your little dog in a basket on your handlebars, waiting for the borders to open — on the faith that thinking it keeps possibility alive, I am hoping to meet you there. Poem 2: "Medicine in Mystery" I've come at last to the Chinese doctor — diagnosis: demonic possession, spirochetes unbound by tissue, blood, or bone. His cure: release the dragons — iridescent white to fight the unnamed, salmon-colored to attack the known. I imagine them with folded wings, small enough to swim in human cells, sent after demons equally ancient, equally small, wh0 show themselves in cytoplasm the way creatures in opaque ponds create concentric rings unseen, break the skin of the water, Then return to hide in the mud. The war proceeds between the winged and wingless, And as in all histories, the winner will write it. The winner will be deemed good, Though every demon, electric, toxic, feels it is a child of the universe. Yet isn't there something always wrong about invasion? something always noble about defense So, in the end, I stand on a lacquered bridge over swollen runoff, a churning pond behind — It's April, ice on all the edges, the air hurts wonderfully to breathe, the water foams white, the sky, late and high, is riddled with salmon-colored contrails. The last dragons leaving. Connect with Donna: Website: https://www.donnapiper.com/ [https://www.donnapiper.com/] LinkedIn: https://www.linkedin.com/in/donnapiper [https://www.linkedin.com/in/donnapiper] Instagram: https://www.instagram.com/thedonnapiper [https://www.instagram.com/thedonnapiper] Facebook: https://www.facebook.com/thedonnapiper [https://www.facebook.com/thedonnapiper] YouTube: https://www.youtube.com/@thedonnapiper [https://www.youtube.com/@thedonnapiper] Resources: 📖 Loosestrife for Porcupines by DM Gordon 🤔Got a question for me? Every month, I do a listener coaching episode—and I'd love to hear from you! Send your questions, stories, or flare-up confessions to donna@donnapiper.com, and you just might hear your answer on the show. 💲Discount Get $20 off the Visible Wrist Band 2.0 Click the link: https://join.makevisible.com/73784699c7db3e [https://join.makevisible.com/73784699c7db3e] **Wearable heart-rate and activity sensor, with charging cable and strap included. 5 days battery life Manufactured by Polar, the world leader in heart-rate monitoring Designed for illness, not fitness HSA/FSA Eligible 💗Springrose Give $20, GET $20 When you share Springrose with friends, they get $20 off their first purchase and you get $20 towards your next purchase!* Share the love. https://oken.do/0l3hpr6v [https://oken.do/0l3hpr6v] 💗Equip Fuel With Real Food Meet Prime Protein, the original beef protein powder, with over 20g of delicious grass-fed beef protein. No junk or fillers https://www.equipfoods.com/DONNA15 [https://www.equipfoods.com/DONNA15] 📖 Get Tricia's Book: Heal Your Hunger: 7 Simple Steps to End Emotional Eating Now Episode Highlights: 03:03 Meet Diana: A Lyme Disease Odyssey 08:33 Why So Many Are Getting Lyme Disease 15:08 Crushing the Loneliness of Chronic Illness 19:03 Conversation is a Medicine 29:00 Brain Looping Challenges 35:52 Poem: Letter From a Long Illness 39:54 Poem: Medicine in Mystery 45:04 Grab Diana's Books 52:02 Life After a Lost Decade Quotes: 02:02 "A lot of times, when we go through stuff, that's when some of our deep creativity comes out. There's always that beauty in the crack." —Donna Piper 06:32 "There was a year and a half when I was on 81 pills a day, taken 17 different times a day… I think this is a pretty common journey for people who are struggling with mystery illnesses." —Diana Gordon 14:35 "Depression is a real part of chronic illness. You need to know what works for you, too." —Donna Piper 19:17 "Just having a conversation is so healing when you can't do anything else." —Diana Gordon 26:03 "It didn't take a whole organization to do it, just that one person and that conversation. I think conversation is medicinal." —Diana Gordon 51:20 "You need to find these little moments to slow down and to heal yourself very slowly. It's a very long game. But by doing that and finding pleasures in that, then you really start to heal." —Donna Piper 52:10 "I lost a decade of my life, but there was an afterwards. There are times when you don't know if you're ever going to get out of this, but keep on… My life at the moment is the fruit of everything that's come before. So, keep the faith, keep trying." —Diana Gordon 53:57 "You can get better, you do get better." —Donna Piper Connect with Diana: Website: https://www.dmgordon.com/ LinkedIn: https://www.linkedin.com/in/ddmgordon/ Instagram: https://www.instagram.com/d_m_gordon_author/ Facebook: https://www.facebook.com/profile.php?id=61588185188220 Substack: https://ddmmgordon.substack.com/ YouTube: https://www.youtube.com/channel/UC3M3_JOf5wJOdhaAr4HwHIA BlueSky: https://%20https//bsky.app/profile/dmgordon.com

The Perrin Technique— Review of the Books Part 3: The Concise Perrin Technique: A Handbook for Patients by Dr. Raymond Perrin

Category: Health & Wellness — Chronic Illness / Invisible Illness Support "Sometimes, healing begins when your symptoms finally have a story that makes sense, not a perfect story, and not the only story, but a story that helps you stop blaming yourself." —Donna Piper There's a specific kind of grief that hits when your body has been trying to talk to you for years, and nobody ever handed you the translator. That's where this episode starts, before Donna introduces the book that finally gave her one. This week is a book talk on The Concise Perrin Technique: A Handbook for Patients by Dr. Raymond Perrin, the patient-friendly companion to his larger clinical text. Donna shares why it was the first thing that made her ME/CFS feel less like a mystery and more like a map. In this episode: The body-based theory behind the Perrin Technique, and how a disrupted nervous system and lymphatic drainage create fatigue, brain fog, and crashes that feel random but aren't. Why ME/CFS isn't "just tired," and what post-exertional malaise (PEM) really feels like, including the delayed crash that hits a day or two later. The phrase that changed Donna's relationship with her limits: do half of what you think you can do. What changed at home once her husband read the book, too. A simple daily pacing check-in you can try with no equipment. Who it's for: anyone living with ME/CFS, fibromyalgia, long COVID, POTS, MCAS, hypermobility (including hEDS), lipedema, or any chronic illness involving pacing or nervous system dysregulation, plus the partners and family trying to understand it. Book mentioned: The Concise Perrin Technique: A Handbook for Patients by Dr. Raymond Perrin: https://amzn.to/4h7Vmwa [https://amzn.to/4h7Vmwa] Connect with Donna: Website: https://www.donnapiper.com/ [https://www.donnapiper.com/] LinkedIn: https://www.linkedin.com/in/donnapiper [https://www.linkedin.com/in/donnapiper] Instagram: https://www.instagram.com/lipedema_donna [https://www.instagram.com/lipedema_donna] Facebook: https://www.facebook.com/thedonnapiper [https://www.facebook.com/thedonnapiper] YouTube: https://www.youtube.com/@thedonnapiper [https://www.youtube.com/@thedonnapiper] Episode Highlights: 01:29 The Perrin Technique: A Clearer, More Practical Path 05:01 Real Talk: A Specific Kind of Grief 08:24 Connective Thread: A Patient Handbook 09:58 Takeaway 1-ME/CFS: A Body-Based Explanation 11:57 Takeaway 2-ME/CFS: Not Just About Energy, It's Recovery 13:37 Takeaway 3- The Perrin Technique: Patient Involvement 18:56 Takeaway 4- ME/CFS: Doing Half 20:44 Takeaway 5-Emotionally Validating 24:00 Myth Busters 27:08 Feel Good Flow 32:47 Shared Education & Lived Experience Resources: 🤔Got a question for me? Every month, I do a listener coaching episode—and I'd love to hear from you! Send your questions, stories, or flare-up confessions to donna@donnapiper.com, and you just might hear your answer on the show. 💲Discount Get $20 off the Visible Wrist Band 2.0 Click the link: https://join.makevisible.com/73784699c7db3e [https://join.makevisible.com/73784699c7db3e] **Wearable heart-rate and activity sensor, with charging cable and strap included. 5 days battery life Manufactured by Polar, the world leader in heart-rate monitoring Designed for illness, not fitness HSA/FSA Eligible 💗Springrose Give $20, GET $20 When you share Springrose with friends, they get $20 off their first purchase and you get $20 towards your next purchase!* Share the love. https://oken.do/0l3hpr6v [https://oken.do/0l3hpr6v] 💗Equip Fuel With Real Food Meet Prime Protein, the original beef protein powder, with over 20g of delicious grass-fed beef protein. No junk or fillers https://www.equipfoods.com/DONNA15 [https://www.equipfoods.com/DONNA15] 📖 Book The Concise Perrin Technique: A Handbook for Patients by Dr. Raymond Perrin https://amzn.to/4h7Vmwa [https://amzn.to/4h7Vmwa] The Concise Perrin Technique is described by Hammersmith Books as a practical patient handbook explaining the "why and how" of using the Perrin Technique to support ME/CFS recovery and healthy lymphatic drainage from the brain; the publisher also lists contents including how the technique works, CFS/ME and fibromyalgia, treatment, FAQs, tests, and the Perrin questionnaire. The official Perrin Technique site describes the approach as an osteopathic method developed in 1989 that aims to support drainage from cerebrospinal fluid into the lymphatic system through spinal movement and soft tissue work around the head, neck, back, and chest. The Perrin Technique self-help guide states that at-home routines are intended for patients currently working with a licensed Perrin Technique practitioner and include flexibility, breathing, self-massage, contrast bathing, active head rest, strengthening exercises, and cross crawl. The CDC describes ME/CFS as a complex, chronic, debilitating disease involving reduced ability to function, post-exertional malaise, unrefreshing sleep, and either cognitive impairment and/or orthostatic intolerance. The CDC also defines PEM as worsening symptoms after previously tolerated physical or mental exertion; symptoms often worsen 12 to 48 hours later and can last days or weeks, and pacing is used to help prevent flare-ups and relapses. 🎙️Podcast The Perrin Technique Part 1: https://bitl.to/5uZn [https://bitl.to/5uZn] The Perrin Technique Part 2: https://bitl.to/5uZo [https://bitl.to/5uZo]

Fascial Counterstrain

"Your body may not need more force, it might just need more safety. Your body might not have been resisting healing, it's just maybe a continuation of the protecting that it's been doing the whole time." —Donna Piper What if your body isn't failing you… it's protecting you? In this episode, Donna Piper unpacks a quiet but powerful shift for anyone living with chronic illness: healing doesn't always come from pushing harder—it often begins with feeling safer. Through a deeply personal lens, she introduces fascial counterstrain, a gentle, hands-on therapy that works with the body instead of against it. You'll hear why so many chronic illness bodies stay stuck in tension, how the nervous system plays a hidden role in pain, fatigue, and swelling, and why "doing more" might actually be keeping you from healing. Donna breaks down how this approach supports everything from lymphatic flow to brain fog—without force, strain, or overwhelm. If you've ever felt dismissed, confused by your symptoms, or exhausted from trying everything… this conversation offers a different way forward. In this episode, you'll learn: What fascial counterstrain actually is (in simple terms) Why chronic illness bodies stay in protective "bracing" patterns How gentle therapy can support pain, fatigue, and nervous system overload The connection between fascia, lymphatic flow, and whole-body healing A simple way to start rebuilding trust with your body today Key takeaway: Your body may not need more effort—it may need more safety. Connect with Donna: Website: https://www.donnapiper.com/ [https://www.donnapiper.com/] LinkedIn: https://www.linkedin.com/in/donnapiper [https://www.linkedin.com/in/donnapiper] Instagram: https://www.instagram.com/lipedema_donna [https://www.instagram.com/lipedema_donna] Facebook: https://www.facebook.com/thedonnapiper [https://www.facebook.com/thedonnapiper] YouTube: https://www.youtube.com/@thedonnapiper [https://www.youtube.com/@thedonnapiper] Episode Highlights: 01:01 What is Fascial Counterstrain? 03:16 Real Talk: Living with Chronic Illness 08:09 Fascial Counterstrain: The Gentle Way 11:41 Connective Thread: Precision, Not Pressure 22:22 What is Fascia? 25:32 Fascia and the ME/Chronic Fatigue Connection 29:29 Why Facial Counterstrain Matters to Lymphatic and Venous Flow 33:56 Myth Busters 38:16 Feel Good Flow 44:11 Shared Education & Lived Experience Resources: 🤔Got a question for me? Every month, I do a listener coaching episode—and I'd love to hear from you! Send your questions, stories, or flare-up confessions to donna@donnapiper.com [donna@donnapiper.com], and you just might hear your answer on the show. 💲Discount Get $20 off the Visible Wrist Band 2.0 [https://join.makevisible.com/73784699c7db3e] Click the link: https://join.makevisible.com/73784699c7db3e [https://join.makevisible.com/73784699c7db3e] **Wearable heart-rate and activity sensor, with charging cable and strap included. 5 days battery life Manufactured by Polar, the world leader in heart-rate monitoring Designed for illness, not fitness HSA/FSA Eligible 💗Springrose Give $20, GET $20 When you share Springrose with friends, they get $20 off their first purchase and you get $20 towards your next purchase!* Share the love. https://oken.do/0l3hpr6v [https://oken.do/0l3hpr6v] 💗Equip Fuel With Real Food Meet Prime Protein, the original beef protein powder, with over 20g of delicious grass-fed beef protein. No junk or fillers https://www.equipfoods.com/DONNA15 [https://www.equipfoods.com/DONNA15] 🔗Links: Official Directory: Find a trained practitioner in your area using the Counterstrain.com Practitioner Directory [https://counterstrain.com/practitioner/] or check The Jones Institute Locator. [1, 2] [https://www.jicounterstrain.com/counterstrain/] Patient Resources: Learn exactly what to expect during a session and how FCS targets the interstitium on the Fascial Connections Patient Guide [https://www.fascialconnectionspt.com/health-resources]. Mechanisms & Education: Dive deep into the physiological rationale behind the technique, such as the reduction of interstitial inflammatory stasis, via Tuckey and Associates Education Page. [1] [https://tuckeypt.com/for-professionals/education/] Training Pathways: Healthcare professionals can explore course levels and Mastery Training requirements at the Counterstrain Training Schedule [https://counterstrain.com/training/introductory-courses/].

No, Karen! I Couldn't Diet My Way of the Lipedema

"Just food alone isn't going make all of these systems behave together. Most of the time with connective tissue disorders, you have constipation, you have gut issues, you have dysautonomia. There's so many things that you have that food alone isn't going to change the actual diseased part of this." —Donna Piper If you've ever been told to "just eat less and move more" while living with a chronic illness, this episode is for you. Today, we are tackling the heavy emotional toll of lipedema, gaslighting in modern medicine, and the myth of the "perfect diet." For decades, many of us have lived with unspoken, unnamed chronic conditions, carrying the guilt that our bodies weren't responding the way society says they should. In this episode, we break down why the responsibility of nutrition isn't about finding a magic, reinvented wheel—it's about learning how to interact with food in a way that genuinely supports your unique body. You are in control of your plate, and you deserve to feel good about what you eat. Key Takeaways from This Episode: • You Did Not Fail: Lipedema is a medical condition, not a willpower issue. You are not lazy, weak, or the problem. • The Nutrition Myth: Why 99.9% of commercial diet programs won't work for lipedema, and why the real power lies in figuring out what foods support your unique inflammation levels. • Finding Peace in a Label: How getting an official diagnosis for a chronic illness can help you finally ease into healing rather than fighting your own anatomy. • Remember: You have been living in a body that has not been fully understood by modern medicine. You are not alone, and you are doing the best you can. Connect with Donna: Website: https://www.donnapiper.com/ LinkedIn: https://www.linkedin.com/in/donnapiper Instagram: https://www.instagram.com/lipedema_donna Facebook: https://www.facebook.com/thedonnapiper YouTube: https://www.youtube.com/@thedonnapiper Episode Highlights: 01:23 The Lipedema Talks 07:07 Diet is NOT the Whole Story 12:14 Real Talk: You Cannot Reverse Lipedema with Just Diet 22:08 Connective Thread: Nuance 29:17 Myth Busters 34:19 Feel Good Flow 39:10 Shared Education & Lived Experience Resources: 🤔Got a question for me? Every month, I do a listener coaching episode—and I'd love to hear from you! Send your questions, stories, or flare-up confessions to donna@donnapiper.com, and you just might hear your answer on the show. 💲Discount Get $20 off the Visible Wrist Band 2.0 Click the link: https://join.makevisible.com/73784699c7db3e **Wearable heart-rate and activity sensor, with charging cable and strap included. 5 days battery life Manufactured by Polar, the world leader in heart-rate monitoring Designed for illness, not fitness HSA/FSA Eligible 💗Springrose Give $20, GET $20 When you share Springrose with friends, they get $20 off their first purchase and you get $20 towards your next purchase!* Share the love. https://oken.do/0l3hpr6v 💗Equip Fuel With Real Food Meet Prime Protein, the original beef protein powder, with over 20g of delicious grass-fed beef protein. No junk or fillers https://www.equipfoods.com/DONNA15

Dear Body, I'm Back! Surgery, Swelling, and the Sacred Weirdness of Healing

"Remember why you want surgery. It's no one else's business." —Donna Piper Chronic illness can turn basic things like walking, sitting, or flying into strategic missions. When surgery enters the chat, it is not about chasing skinny; it is about survival, mobility, and pain relief. This solo episode sits in that tender, unglamorous middle of fear, hope, and raw honesty. In this story, Donna shares a second high-volume lipedema surgery in Germany, traveling solo with ME/CFS, POTS, MCAS, and hypermobility EDS in the mix. Her experience reshapes what healing, body image, and "success" look like inside a chronic illness body. Hit play to hear the real cost and quiet wins of this decision, and how our bodies keep asking to be trusted again. • Why lipedema surgery in Germany was about walking, not shrinking • Navigating flights, hotels, food, and accessibility with chronic illness • High-volume liposuction details and anesthesia tweaks that helped • Compression garments, MLD, swelling, and the reality of recovery • Body dysmorphia, vulnerability, and learning a new body story • Myth-busting around "vanity," weight stigma, and mental health • Simple 4-4-4 breathwork to calm the nervous system in hard moments Connect with Donna: Website: https://www.donnapiper.com/ [https://www.donnapiper.com/] LinkedIn: https://www.linkedin.com/in/donnapiper [https://www.linkedin.com/in/donnapiper] Instagram: https://www.instagram.com/lipedema_donna [https://www.instagram.com/lipedema_donna] Facebook: https://www.facebook.com/thedonnapiper [https://www.facebook.com/thedonnapiper] YouTube: https://www.youtube.com/@thedonnapiper [https://www.youtube.com/@thedonnapiper] Episode Highlights: 01:48 Real Talk: 2nd Surgery 07:53 Solo-Traveling to Germany 10:49 Surgery Details and Recovery 20:03 Post-Surgery Challenges and Adjustments 22:52 Emotional and Mental Aspects of Healing 27:21 Conective Thread: Healing is Not Linear 31:25 Myth Busters: Remember Your Why 34:47 Feel Good Flow 37:31 Shared Education & Lived Experience Resources: 🤔Got a question for me? Every month, I do a listener coaching episode—and I'd love to hear from you! Send your questions, stories, or flare-up confessions to donna@donnapiper.com, and you just might hear your answer on the show. 💲Discount Get $20 off the Visible Wrist Band 2.0 Click the link: https://join.makevisible.com/73784699c7db3e [https://join.makevisible.com/73784699c7db3e] **Wearable heart-rate and activity sensor, with charging cable and strap included. 5 days battery life Manufactured by Polar, the world leader in heart-rate monitoring Designed for illness, not fitness HSA/FSA Eligible 💗Springrose Give $20, GET $20 When you share Springrose with friends, they get $20 off their first purchase and you get $20 towards your next purchase!* Share the love. https://oken.do/0l3hpr6v [https://oken.do/0l3hpr6v] 💗Equip Fuel With Real Food Meet Prime Protein, the original beef protein powder, with over 20g of delicious grass-fed beef protein. No junk or fillers https://www.equipfoods.com/DONNA15 [https://www.equipfoods.com/DONNA15]