Epilepsy, Philosophy, Creative Writing, and Rose Colored Glasses {A Chronic Illness Podcast}˜

So everything I know about epilepsy is what I have seen or read in the media this interview was illuminating on what a person with epilepsy needs to do to navigate the world safely. There is so much in this interview about triggers, surrendering to your body as self care, dating with epilepsy, drinking or not drinking socially, and what kinds of lighting can cause an attack. Emily is so interesting to talk to. This is a wonderful interview to share with anyone who has or has a friend or family member who has been diagnosed with epilepsy.

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Part 2 Ehlers Danlos Pirate Service Dog CDIF CRPS Part 2 {A chronic illness podcast}

I admit it I ADORE her and her dog Sirius (How can you not love a pirate service dog named for Harry Potter character Sirius Black?) We had a long talk about Ehlers Danlos, life in a wheelchair, CRPS, and service dog etiquette. Service dogs behaving badly can be a huge danger for disabled people dealing with chronic pain and chronic illness. Enjoy this week and tune in next week for part 2.

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Ehlers Danlos Pirate Service Dog CDIF CRPS {A chronic illness podcast}

I admit it I ADORE her and her dog Sirius (How can you not love a pirate service dog named for Harry Potter character Sirius Black?) We had a long talk about Ehlers Danlos, life in a wheelchair, CRPS, and service dog etiquette. Service dogs behaving badly can be a huge danger for disabled people dealing with chronic pain and chronic illness. Enjoy this week and tune in next week for part 2.

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Don't Try This At Home An Experiment In Pain Medication: Chronic Illness Blog

Alright maybe I have listened to too many Tim Ferris Podcast episodes (no really super motivating. Give it a try if you haven't). I decided to run a personal experiment as the US has yet again made it more difficult to get pain medication even when you go to a PAIN CLINIC…click about to read more on a chronic pain patients personal experiment in pain management without opioids. Warning this is not pretty, cute, or fun. If suffering makes you uncomfortable well please watch and then call your congress person and VOTE

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Lyme, Fibromyalgia, Migraines, Medication, and Nonbinary Trans Talk Part 2

First an apology on behalf of Skype on the frustrating audio! If any of you tech geniuses know another way to conduct interviews with everyone being able to see each other PLEASE reach out! Otherwise, I PROMISE you this interview is worth listening to even with the audio. Eliott has become one of my favorite people. I can not thank Eliott enough for VERY gently correcting my language to be more inclusive and for explaining trans and nonbinary in ways that I could really understand. Eliott also has some incredible coping issues for pain management which they learned from fibromyalgia, benign hyper-mobility, after effects of Lyme disease, depression, generalized anxiety. I hope you enjoy and please listen both weeks. This is our first 2 parter. 

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Lyme, Fibromyalgia, Migraines, Medication, and Nonbinary Trans Talk on Invisible Not Broke

First an apology on behalf of Skype on the frustrating audio! If any of you tech geniuses know another way to conduct interviews with everyone being able to see each other PLEASE reach out! Otherwise, I PROMISE you this interview is worth listening to even with the audio. Eliott has become one of my favorite people. I can not thank Eliott enough for VERY gently correcting my language to be more inclusive and for explaining trans and nonbinary in ways that I could really understand. Eliott also has some incredible coping issues for pain management which they learned from fibromyalgia, benign hyper-mobility, after effects of Lyme disease, depression, generalized anxiety. I hope you enjoy and please listen both weeks. This is our first 2 parter. 

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Thoracic Outlet Syndrome, Spoonie Business Owners, Pain Management, & Relationships Chronic Illness Edition

 This week we’re talking about the Thoracic Outlet Syndrome with Jen Hein and I have been waiting a long time for this episode because I really want to talk to another person who has a chronic illness and had to close of business that they built. Some of you know that I also had to shut down my Menlo Park photography studio when my Ehlers Danlos became too severe to continue. We talked about everything from pain management, medical marijuana in California, the opioid crisis has always been a big one here, and getting on drug seeking lists when accessing pain medication, and the kind of behavior you have to show to be a  "good" patient. Listen to the very end because we talk about what it’s like for spoonies to be in a relationship together, we talked about sex and disability (check out Kyros and my panel discussion about chronic illness and sex and relationships here), and we talk about some really good ideas for romantic low-stress spoony dates.

Recommendations and Links

A Better Pain Scale Hyperbole and A Half

Golden Tiger Balm

Apple AirPods

Acupuncture and Thoracic Outlet Syndrome

The Magicians

Dr. Who

What is your disorder? *

Thoracic outlet syndrome. I also have scoliosis, myofascial pain syndrome, and chronic pain (Love that one, such a blanket term)

If you would like to contact Jen you can find her on Instagram at  rebel__lioness 

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Secret Spoonie II A Chronic Illness Podcast

 Hello everyone and welcome back to Hidden in Plain Sight. For those of you just joining me, my intent is for this to be a monthly column about the trials and tribulations of living life with invisible illnesses that (most) people don’t know about. To recap: Over the last twenty-eight years, I have had numerous major surgeries, and a handful of minor ones, in addition to dozens of other (often invasive) medical procedures. I’ve had organs removed and a metal plate and cage implanted in my neck. I have been formally diagnosed with Spinal Stenosis, Fibromyalgia, Ankylosing Spondylitis, Peripheral Neuropathy, Raynaud’s Syndrome, and Stage Four Endometriosis. I am not entirely closeted, as some people do know about my medical conditions, but for the most part I live my life in a state of semi-secret. I hope that what I write here will resonate with some of you who might be in a similar position, and let you know that you are not alone.

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Hashimotos, Alopecia, Author Jenny Berk on Body Image, Chronic Illness Parenting, and Zombies A Chronic Illness Podcast

I had far too much fun interviewing best selling author and coach Jenny Eden (seriously buy her book The Body Image Blueprint). We talk parenting with chronic illness (she has Hashimotos and Alopecia areata). We talk anorexia and body image and raising daughters. We even talk zombies. I hope you enjoy and head over to Jenny’s coaching website Jenny Eden Coaching Until next week’s chronic illness podcast: Be Kind. Be Gentle. Be A Badass.

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Bipolar, PostPartum Depression, PTSD ,and Migraines : An Invisible Illness Podcast

From the best way to support a spoonie to great ways to manage anxiety to the true story of postpartum depression with and without medication this episode is absolutely full of great spoonie life hacks and some real information about bipolar, anxiety, and migraines from high school to college to being a new mom. Make sure to share this episode with anyone who has or anyone you would like to know more about postpartum depression, migraines, or bipolar. Thank you and until next week Be kind. Be gentle, and be a bad ass.

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Faking it: From Disability Placards To Service Dogs: Chronic Illness Podcast

Kyros and I heavily debated doing this episode on Faking It All About Disability Placard and Service Animal Abuse of the System. Though we are not fans of calling people out this has become such an issue in our and others lives. The abuse of the system means life is so much more difficult for those who need these services. Take a listen and let us know what you think or if you have solutions we'd love to hear from you!

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Polycythemia Vera: Vampires Would Love Her {Chronic Illness Podcast}

Hello everyone thank you for being patient this week I was regular sick. I truly believe that those of us with chronic illness should be given a pass on the flu but hey no-one asked me. This week I am talking with the author of You Are Not Your Diagnosis Lyn Thompsan about her polycythemia vera, a blood disorder that even after 6 months of doing this chronic illness podcast I have never heard of. 

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Chronic Migraine Interview With Kevan From Made In California {Chronic Illness Podcast}

An interview with Kevan, the owner of Made In California who suffers from chronic migraines.This week is near and dear to my heart, chronic migraines are not unknown in my house.

We really went into the weeds on what it is like to being a student, female, and having an invisible and chronic illness. I really would love for more teachers and educators to listen there is a lot in here about things a child with chronic illness deal with. We also discussed isolation and chronic illness, technology and chronic illness, medical marijuana and migraines, pugs and other support and snorting animals, and the inspiration behind Kevan's business Made In California

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