Real-Life Stories of Reclaiming Autoimmune Health
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 ulcerative colitis, rheumatoid arthritis, lichen sclerosis, ALS, 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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- Intro (0:00)
- Thank You to our Podcast Sponsor – Paleo on the Go (1:52)
- A frozen meal delivery service, they have a large menu of items for the paleo autoimmune protocol (AIP).
- Use the code PHOENIX for 10% off your first order.
- Rebecca’s Healing Story (2:48)
- Rebecca Boucher has lichen sclerosus (LS), an autoimmune skin condition that can affect the skin bodywide, but usually affects the genitalia. This often adds an extra layer of fear and shame for patients, especially when many doctors are uninformed about this diagnosis. Symptoms can include itching, burning, white patches, thinning skin, tearing, and fusing. If you think you might have this condition, mention it to your gynecologist and request a biopsy.
- For many years, she was able to successfully manage her flares with steroid ointment. But eventually, it stopped being effective and instead seemed to make her symptoms worse.
- At her worst, she needed to apply ice packs to her genitalia to control the inflammation. She had high anxiety about the potential for permanent damage. And she felt very alone.
- She actually went gluten-free/dairy-free before her LS diagnosis, which dramatically improved other health and digestive issues, but had no impact on the LS. It wasn’t until she went AIP that she experienced significant reduction in her LS symptoms. She went from experiencing flares daily, to now going months between flares. If a flare happens now, it’s also much milder and short-lived. The AIP improved her winter eczema as well.
- Emotional support and stress management have been an important part of her self-care. Her naturopath was the first person who helped her with this aspect of her health. Rebecca practices guided visualizations, breathing exercises, self-compassion and yoga.
- Lifting the veil of secrecy and being able to talk about LS has also been healing for Rebecca. This first happened through supportive conversations with her naturopath, and eventually led to her blog, Lichen Paleo Loving AIP. She also facilitates an LS group on Facebook.
- Lorraine’s Healing Story (20:39)
- Lorraine Carlson has rheumatoid arthritis (RA), an autoimmune disease that attacks that joints.
- The stress of a severe car accident preceded RA onset. 9 months after the accident, when she should have been healing well from her injuries, she developed a cluster of unexplained symptoms: severe leg swelling, burning/stabbing pain body-wide, fevers/chills, and rapid weight loss. Her doctor suspected lymphoma (which she didn’t have), but in the process of testing she was diagnosed with rheumatoid arthritis. She was put on high-dose prednisone, which rapidly reduced her swelling and inflammation, along with immunosuppressants to manage the disease.
- Lorraine supports her health in many different ways. She has worked with a functional medicine specialist, physical therapist, psychiatrist, and acupuncturist. She also follows the paleo autoimmune protocol and practices mind-body-spirit techniques such as meditation. And she has found in-person and online support groups to be very helpful, especially Arthritis Introspective and the AIP Groups.
- Lorraine now works with a paleo-friendly rheumatologist who helped her slowly wean off her medication in 2014. She’s been medication-free for 3 years, and experienced some long periods of remission during that time. She still used naproxen occasionally to manage pain when it arose, but after developing an ulcer, that was no longer an option. Now, she uses ice and topical medical marijuana oil when pain arises. That said, some recent life stresses have caused an increase in symptoms, and she is considering going back on some immunosuppressant medication. She’ll be discussing it with her doctor at her next appointment. Resource: Episode 48: Medication Decisions.
- Even with a return of some symptoms, she feels dramatically better than she did at RA onset 5 years ago. She’s even enjoying playing piano again, and as a professionally trained musician, that brings her great joy.
- Lorraine isn’t a blogger, but rather a member of the Phoenix Helix reader/listener community.
- Other resources mentioned:
- Nicole’s Healing Story (42:28)
- Nicole Erickson has ulcerative colitis (UC), an autoimmune disease that attacks the colon.
- She had her first UC flare 16 years ago when she was in college, but she refused a colonoscopy at that time and didn’t receive an official diagnosis until 5 years later. Her worst flare happened right before she got married. She suffered severe pain, cramping, urgent bowel movements, bloody stool, fatigue, and memory issues. She was popping ibuprofen like candy, and the severity of her symptoms left her house-bound. The flare continued over her honeymoon, and when she returned home she requested a colonoscopy and received the diagnosis.
- She tried a number of medications over the years. Steroid suppositories were always the most effective. Oral medication seemed to make her feel worse instead of better. Her symptoms manifest primarily at the end of her colon toward her rectum.
- In 2010, she went off her medication. When she flared again in 2013, she chose to address it with diet and lifestyle. She went gluten-free, sugar-free, and alcohol-free. She took some supplements: fish oil, probiotics, aloe vera juice, and turmeric. And she focused on rest and gentle movement. The flare lasted 6 months, but she was able to get through it with no medication, and she hasn’t flared since.
- While her UC went into remission, she still experienced other digestive issues (bloating and gassiness). She met Angie Alt in a nutrition training class and decided to try the paleo autoimmune protocol in 2015. That’s how she discovered her other food intolerances (chocolate, nuts, seeds, legumes, and white potatoes), and was able to resolve her digestive issues altogether.
- Stress management is also an important part of her self-care. Both of her biggest flares were stress-induced, so she watches that closely now.
- Nicole is a Nutritional Therapy Consultant and Certified AIP Coach.
- Other resources mentioned:
- Ed’s Healing Story (1:02:18)
- Ed Rapp has Amyotrophic Lateral Sclerosis (ALS), a degenerative disease that attacks the nerve cells which control voluntary muscle movement. While not autoimmune in nature, Ed’s implementing many similar measures to maximize his health. The average life span for people after diagnosis is 2-5 years.
- Ed had his first symptom in December 2014 (dragging foot). It took another year to get diagnosed. While his doctor told him there was nothing he could do to slow or stop the progression of his disease, Ed didn’t believe that. He did a lot of research and came up with a 6-point personal health protocol.
- Now, 3 years since his first symptom and 2 years post-diagnosis, he’s doing very well. He is strong physcially and has perfect breathing capacity. His biggest challenge is mobility – the ALS is affecting his gait, but he’s still on his feet. He feels blessed.
- Ed also started a non-profit foundation, called Stay Strong Vs. ALS.
- Ed’s Personal Health Protocol:
- Conventional medical care through Johns Hopkins, chosen due to their participation in the Answer ALS research project.
- Functional Medicine, which has included prescribed supplements, detoxification, and IV lipids.
- The Wahls Protocol.
- Foundation Training.
- Chiropractic and Acupuncture.
- Prayer and Affirmations.
- Summary (1:26:51)
- This is the 5th 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 the paleo autoimmune protocol 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 (1:27:51)
- Eileen (your podcast host) is the author of multiple books, written to help people thrive with autoimmune disease. Learn more on the Books Page.
- If you like this podcast, follow or subscribe through your favorite podcast app. You can also subscribe to Eileen’s biweekly newsletter.
- Check out the entire archive of podcast episodes.
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