Episode 230: Healing Stories 11

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Real-Life Stories of Autoimmune Resilience

If you’re a regular listener of my podcast, you know that I start every year with a Healing Stories episode. It features back-to-back interviews with autoimmune warriors just like you! I ask them to share their journey from rock bottom to reclaiming a vital life. In this episode, we talk about Hashimoto’s thyroiditis, psoriasis, psoriatic arthritis, Crohn’s disease, narcolepsy, rheumatoid arthritis, sarcoidosis, and also autoimmunity in general. Everyone’s story is unique, but we also have so much in common. Whatever your diagnosis, I hope these stories resonate and inspire.

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Show Notes

  • Intro (0:00)
  • Thank You to Our Podcast Sponsor – Luminance Skincare (1:41)
    • This episode is airing in January and winter can be really hard on our skin. Kim, the owner of Luminance, has written a blog post with tips to take care of your skin this winter!
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  • Celine’s Healing Story (3:20)
    • Celine Barrica has Hashimoto’s thyroiditis, psoriasis, and psoriatic arthritis.
    • Her autoimmune diagnoses came close together in the summer of 2022. She had Hashimoto’s symptoms for 10 years before receiving a diagnosis. Psoriatic arthritis, however, appeared suddenly. She woke up one day with intensely painful swelling in her hands that didn’t go away, and the pain soon spread to other joints. She was unable to dress herself, clean, cook, drive, or work. Soon, she needed to use a cane and wear wrist braces. She also lost the ability to do many of her favorite activities: dancing, riding a motorcycle, and playing cello. She no longer recognized herself and was overwhelmed by grief and anger. It was an identity crisis and a true dark night of the soul.
    • Now a year and a half later, she feels dramatically better. Her Hashimoto’s is close to remission. Her arthritis flares are well managed. She no longer needs a cane. She’s able to work again. And while she can no longer do the intense physical activities she did before, she lives a fulfilling life. A huge moment for her emotionally was realizing she no longer wanted to be the Celine she was before her diagnosis; there was a reason she got sick. She’s come to love and appreciate the Celine she is now. Self-compassion and self-acceptance have been a huge part of her journey, and she’s also been able to reclaim her identity as a healer in a new and deeper way.
    • The Paleo Autoimmune Protocol (AIP) was integral to getting her inflammation and flares under control. Chinese herbs and acupuncture were also essential (Celine is a Chinese medicine practitioner). She learned to become her own health advocate. And she gathered a support system of family, friends, and therapists.
    • Celine said the internal mental/emotional/spiritual work was actually the most powerful. Her health crisis forced her to ask the question: “Who am I?” at a very deep level. If autoimmune disease can be considered an allergy to self, Celine reflected on the parts of herself she was refusing to acknowledge. As a child of Filipino immigrants, she never felt quite Filipino nor American. Reconnecting with her ancestors and focusing on intergenerational healing was a big part of learning to love herself again. Lastly, she also had to learn to have fun again. She was immersed in grief, and finding ways to nurture both curiosity and playfulness was her path out.
    • Medication Decisions: While Celine is open to pharmaceuticals if she needs them in the future, she hasn’t taken any yet. Instead, she has had great success with Chinese herbal formulas, which are prescribed for her unique body. After starting the herbs, her pain dropped from an 8 to a 4 within just 2 weeks, and now the pain is usually between 0 and 1.
    • Connect with Celine through her website: CelineBarrica.com. She is a Licensed Acupuncturist, East Asian Medicine Herbalist, Certified Autoimmune Paleo Coach, and Certified Massage Therapist. She does offer virtual sessions, but for licensing reasons patients need to live in California. Her practice focuses on autoimmune disease and chronic illness, and her mission is to help others navigate their own dark night of the soul and learn what will help them thrive. You can also follow her on Instagram @celinebarricalac.
    • Resources:
  • Amelie’s Healing Story (21:56)
    • Amelie March has Crohn’s disease.
    • Amelie was diagnosed at age 22 and she’s 50 now, so she’s been living with Crohn’s disease for almost 3 decades. She’s now in remission, but in the past she experienced severe flares that lasted about 18 months each. During those flares, she was in constant pain which required morphine and steroids to treat. She was unable to work and also struggled to care for her children. She had extremely high fatigue and spent a lot of time in bed. She gained weight from the blend of inflammation and medication side effects. She also experience skin rashes. During flares, her diet was restricted to about 10 foods that her body could digest.
    • Life in remission is night and day from the description above. She’s able to work and live an active, joyful life. She experiences mini flares occasionally but she knows how to mitigate them, and they only last a few days to a few weeks. The symptoms are mild – like a signal from her body that it’s time for some self-care. Instead of pain or disability, the mini flares begin with digestive symptoms and fatigue.
    • In 2015, Amelie had been experiencing a severe Crohn’s flare for 18 months and nothing she tried was able to get it under control. Her doctor wanted her to try Remicade, an infusion biologic medication that Amelie hoped to avoid. She asked her doctor to give her three months to try the Paleo Autoimmune Protocol (AIP). If it didn’t work, she would take Remicade. The good news is that the AIP worked! She started to see improvements within 2 months, and within 5 months the majority of her symptoms were gone. At that point, she transitioned from the AIP to a regular paleo diet and did that for 2 years. When she got a colonoscopy, it showed she was in 100% remission, and she’s been in remission ever since.
    • Lifestyle changes: One that made a big difference for Amelie was learning about exercise intolerance. In the past, when her symptoms improved she would jump back into heavy exercise and that would often trigger another flare. Autoimmune Strong is an exercise program designed to help people overcome exercise intolerance and rebuild their strength slowly and safely. It made a huge difference for Amelie. She also focused on stress management: working with a psychologist, learning to let go of what she couldn’t control, learning to set boundaries and say no, and prioritize herself and her health. She was able to reduce her work hours from 40 hours a week to 30, which gives her more work-life balance. She also has a healthcare team that includes a naturopath alongside her gastroenterologist and family doctor.
    • Medication Decisions: While Amelie has avoided biologics, she does take an oral immunosuppressant at a low dose, and she doesn’t experience any negative side effects with that medication. Whenever she has tried going off it, she experiences a Crohn’s flare. However, medication alone isn’t enough to keep her in remission, which is why she did the Paleo Autoimmune Protocol. Her medication plus diet & lifestyle changes are a blend that works for her.
    • I met Amelie through my Phoenix Helix Facebook Page. If you follow me there, comment on my posts to say hi!
    • Resources:
  • Thank You to Our Podcast Sponsor – Adapt Naturals (36:46)
    • Adapt Naturals is a supplement company founded on 15 years of clinical expertise by globally-renowned expert, Chris Kresser. Most supplements are made with cheap, synthetic ingredients, and they’re also poorly formulated. They don’t contain enough of what we do need (or too much of what we don’t). Chris Kresser created a supplement line with the opposite goals.
    • Each one is formulated to fill a biological need, using natural ingredients rather than synthetic, and each ingredient is maximized for your body’s absorption. They are designed to tackle a range of health issues at the root – from easing stress to clearing brain fog.
    • Adapt Naturals has seven carefully chosen supplements in their product line:
      • A multivitamin to support optimal health
      • Vitamin d3 and k2 to help balance the immune system
      • An omega+ anti-inflammatory supplement
      • An organ meat blend for nutrient density
      • Vitamin E+ to slow the aging process
      • Magnesium to support many vital processes in our body
      • And a blend of 8 superfood mushrooms for deep focus, sustained energy, and a sense of calm and balance throughout the day.
    • Use the code HELIX to save 15% off your order. Shop here: AdaptNaturals.com/Helix.
  • Jamie’s Healing Story (38:27)
    • Jamie Nicole has Hashimoto’s thyroiditis, narcolepsy, and rheumatoid arthritis.
    • Our first two guests had clear before-and-after moments, making changes in their lives that made dramatic improvements in their health. However, sometimes healing isn’t linear. Sometimes we recover from one challenge and then are faced with another. Resilience is our ability to meet these challenges when they arise, and Jamie is a great role model for doing that.
    • Hashimoto’s was her first diagnosis in 2015. She was having trouble losing weight and made an appointment with a hormone doctor who did a series of tests and was able to diagnose her quickly. Nicole then researched autoimmune diets and discovered which foods were inflammatory triggers for her. When she removed those foods from her diet, she lost 20 pounds in 2 months. She thinks the weight was mostly inflammation.
    • Narcolepsy was her second diagnosis and the most challenging. She lived with symptoms for 25 years before getting that diagnosis. At rock bottom, the fatigue was disabling. She was a busy single mom with a demanding job, so she knew what tired felt like, but this fatigue was different. It was overwhelming. She had to step down from a management position to a less demanding job, and she also struggled with the tasks of daily life. The mental toll was almost worse than the physical toll. In addition to depression, she started having panic attacks when trying to complete simple tasks. Eventually, she was diagnosed with Type 2 Narcolepsy. Type 1 Narcolepsy includes the famous fainting spells. Those don’t happen with Type 2, making it harder to diagnose. Common symptoms of Type 2 include a reversed sleep cycle (severe insomnia at night combined with daytime sleepiness so strong that you have to lie down). Vivid dreams are also common. After her Hashimoto’s doctor ruled out other potential causes of fatigue, she referred Jamie to a sleep specialist who did a sleep study that confirmed the diagnosis. This was 2019. She was prescribed medications that helped, but they came with severe side effects. Since a dietary intervention helped with Hashimoto’s she wanted to see if one would also help with narcolepsy. A DNA test showed that she was carb sensitive, and through research she learned that intermittent fasting can sometimes minimize narcolepsy symptoms. In 2021, she did a diet “reset” that was a low-carb version of the paleo autoimmune protocol combined with intermittent fasting. Her goal wasn’t weight loss this time. Her goal was to reduce her narcolepsy symptoms and improve her quality of life. It was life-changing. She now has a personalized protocol that allows her to live well.
    • In 2023, Jamie started having new symptoms: a severe rash on her face that didn’t go away and severe pain in both shoulders. MRI’s showed torn rotator cuffs and degenerating bicep tendons. There was no clear reason for the injuries, and while Jamie is an athletic person, it’s rare for sports injuries to occur identically on both sides of the body. Her doctor ran some antibody tests which came back negative for RA and positive for MCTD. She was referred to a rheumatologist who ran more tests, and those results came back the opposite: positive for RA and negative for MCTD. When antibodies are low, a clear diagnosis is challenging. Then, Jamie had her first shoulder surgery, but didn’t recover as expected. She was prescribed a 6-day steroid pack and was told that if it helped her shoulders, that would confirm autoimmune involvement. The steroids did help. Since rheumatoid arthritis runs in her family and she wants to avoid more joint damage, she’s planning to start medication following her second shoulder surgery.
    • Health advocacy has been a strong thread in Jamie’s health journey. She does her own research and asks for the referrals, tests, and treatments she needs. One of her specialties as a health coach is helping others do the same.
    • Medication decisions: Jamie has chosen an integrative approach, combining medication with diet and lifestyle changes to feel her best.
    • You can connect with Jamie through her website: NaturalHealing.Coach. She’s also on social media @healcoach. She specializes in helping people with autoimmune disease, as well as those who have symptoms but don’t yet have a diagnosis. She offers both individual and group coaching. And she is the founder of the AIP BIPOC Network.
    • Resources:
  • Ivonne’s Healing Story (1:06:09)
    • Ivonne Villafañe-Mauquer has sarcoidosis, a disease where the immune system creates lumps of inflammatory cells called granulomas. They can appear anywhere in the body so the symptoms can be wide-ranging. The most common place they appear is the lungs.
    • It took years for Ivonne to get an accurate diagnosis. Her first symptom appeared in 2009, 6 months after the birth of her son. She developed hydrocephalus: a buildup of fluid in the ventricles deep within the brain, caused by granulomas. She was treated for hydrocephalus but no one mentioned the possibility of sarcoidosis. Then in 2014, she was hospitalized with a severe case of pneumonia. She was given antibiotics, which is the most common treatment for pneumonia. When she didn’t improve, the doctors tried steroids and she improved immediately. Again, no one mention sarcoidosis. The following year, she was misdiagnosed with lung cancer. The granulomas in her lungs were mistaken for malignant tumors. When it was determined she didn’t have cancer, Ivonne requested her medical charts where she saw a note about the possibility of sarcoidosis. She requested testing, and the diagnosis was confirmed in 2016. It took 7 years, multiple hospital visits, and eventually self-advocacy to get an accurate diagnosis. In addition to the symptoms that put her in the hospital, Ivonne also had skin problems, liver problems, vision problems, fevers, and joint pain – all caused by sarcoidosis.
    • The doctors recommended medication which Ivonne declined. She chose to consult with a naturopath instead who recommended the paleo diet and lifestyle. Ivonne started with baby steps, cutting gluten, dairy, and sugar first. Within 3 months, her fevers were gone and her other symptoms started improving as well. Then she went grain-free and experienced even more improvements. The hardest grain for her to give up was corn, because she grew up eating arepas every day in Venezuela. It’s one of her favorite foods, but she’s learned that for her, corn is inflammatory, and she no longer eats foods that cause her pain.
    • Ivonne doesn’t call it a diet, but rather a lifestyle because it incorporates other healthy changes beyond food. Exercise is one of the things that benefits her the most, but she has had to experiment to find forms of exercise that help rather than hurt her body. For example, walking actually hurts her ankles, but she has a rowing machine at home that she uses and loves.
    • While her symptoms aren’t 100% gone, she’s been able to reduce and manage them much better, and she feels empowered that her daily choices make such a difference.
    • Medication decisions: while Ivonne has chosen not to take daily medication, she does take steroids during flares if needed, and she also takes supplements prescribed by her naturopath.
    • I met Ivonne on Instagram, and you can follow her @paleo_fighting_sarcoidosis.
    • Resources
  • Resources for Healing: Eileen’s Books (1:19:11)
    • A Simple Guide to the Paleo Autoimmune Protocol is all of the essential information in a package small enough to fit in your purse. It’s simple enough that even someone with brain fog can understand, and written like a conversation between friends. It’s even available as an audiobook!
    • The Paleo AIP Instant Pot Cookbook has 141 recipes to help you eat well on the AIP while saving time in the kitchen!
    • Healing Mindset is a guide to the mind-body connection for people with autoimmune disease. Stress management is essential to autoimmune health, whatever diet you follow.
  • Other Healing Stories Episodes (1:20:30)
    • This is the 11th Healing Stories episode, and you can find the others here. I feature a wide variety of diagnoses, but even if your diagnosis isn’t featured, please know that these stories still apply to you. Autoimmune diseases have much in common, which is why they are treated similarly by conventional medicine, and why a healing diet and lifestyle benefits so many.
    • Many of my podcast guests I meet through social media. Be sure to follow me on Instagram and Facebook, to join the conversation.
  • Outro (1:21:23)

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