Stay ConnectedThe podcast network that speaks to people with chronic illness, invisible illness, disability, and chronic pain.
“Explicitly Sick Podcast” with Monica Michelle + “[Human]care Podcast” with Eva Minkoff
Be Kind. Be Gentle. Be A Bad Ass.
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Uncovering the Radical Legacy of Disability Activist Ed Roberts with Biographer Scott Danforth
Keywords
Ed Roberts, disability rights, activism, biography, independence, community, technology, publishing, women in activism, accessibility
Takeaways
Ed Roberts was a pivotal figure in the disability rights movement.
His activism began at UC Berkeley with the Rolling Quads.
The fight for disability rights is ongoing and requires constant vigilance.
Family dynamics play a crucial role in fostering independence for disabled individuals.
Community building is essential for effective activism.
Technology can greatly enhance accessibility for disabled individuals.
The Center for Independent Living was a groundbreaking initiative for disability rights.
Women played a significant but often overlooked role in the disability rights movement.
Writing a biography involves difficult choices about what to include or exclude.
The publishing process can be challenging, especially for underrepresented stories.
Summary
This conversation explores the life and legacy of Ed Roberts, a pivotal figure in the disability rights movement. Scott Danforth, the author of a biography on Roberts, discusses the challenges and triumphs of advocating for disability rights, the importance of community and independence, and the role of technology in enhancing accessibility. The conversation also touches on the often-overlooked contributions of women in the movement and the complexities of writing a biography. Danforth shares insights from his research and the publishing process, emphasizing the need for continued advocacy and the importance of storytelling in the fight for disability rights.
Titles
Unveiling Ed Roberts: A Disability Rights Pioneer
The Legacy of Ed Roberts and Disability Activism
Sound bites
"This is not a very well-known man."
"He had polio as a teenager."
"He loved the technology."
Chapters
00:00 Introduction to Ed Roberts and His Legacy
02:13 The Fight for Disability Rights
09:07 Independence and Family Dynamics
14:53 Building Community and Activism
21:28 Technological Advancements and Accessibility
26:57 Revitalizing the Center for Independent Living
27:24 The Legacy of Ed Roberts and Disability Activism
28:23 Unveiling the Myths of Disability Leadership
30:49 The Unsung Heroes of the Disability Rights Movement
31:54 Chronic Illness and the Overlooked Voices
33:30 The Joys and Challenges of Writing a Biography
35:21 The Process of Research and Writing
36:17 Editing and Storytelling in Biography
38:44 Navigating the Publishing Landscape
41:25 The Journey into Disability Studies
43:58 Dreams vs. Reality in Disability Advocacy
46:46 The Importance of Community and Creativity
48:23 Joy as Resistance in Activism
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Keywords
TMS, transcranial magnetic stimulation, brain injury, mental health, medical gaslighting, patient advocacy, chronic illness, technology in healthcare, self-care, mindfulness
Summary
In this conversation, Jordan Hanson shares her personal journey with transcranial magnetic stimulation (TMS), a procedure intended to treat mental health issues. She discusses the initial excitement about the treatment, the subsequent negative effects she experienced, and the challenges of navigating the medical system. The conversation highlights the importance of patient advocacy, community support, and the role of technology in managing health. Jordan emphasizes the need for awareness and understanding of the risks associated with TMS and the importance of self-care and mindfulness in coping with chronic illness.
Takeaways
TMS is a procedure that uses magnetic fields to stimulate brain activity.
Jordan experienced significant negative effects from TMS, including brain injury symptoms.
Medical gaslighting is a common issue faced by patients seeking help.
Community support is crucial for those dealing with chronic illness.
Technology, including AI, can assist in managing health and communication.
Self-care and mindfulness are essential for coping with chronic illness.
Advocacy is important to raise awareness about the risks of TMS.
Family planning can be complicated by health issues and uncertainties.
Understanding the impact of chronic illness on daily life is vital.
The journey of healing is ongoing and requires patience and support.
Titles
The Hidden Risks of TMS: A Personal Journey
Navigating the Medical Maze: Jordan's TMS Experience
Sound bites
"I was called headache girl for a year."
"I want to share my story to help others."
"I have to protect myself and my energy."
Chapters
00:00 Introduction to TMS and Jordan's Journey
01:13 Understanding the Impact of TMS on Life
01:28 Introduction and Background on TMS
04:20 Understanding Trans-Cranial Magnetic Stimulation (TMS)
07:23 The Experience of TMS Treatment
10:20 The Impact of TMS on Daily Life
13:09 Medical Gaslighting and Patient Advocacy
16:13 The Journey to Recovery and Diagnosis
19:14 Community Support and Sharing Stories
22:18 The Decision to Create a Documentary
25:13 Advocacy and Future Goals
36:11 The Need for Scientific Understanding in TMS
40:42 Coping with Chronic Illness and Disability
44:52 Navigating Family Planning Amidst Uncertainty
52:54 Leveraging Technology for Brain Injury Support
59:42 Personal Growth Through Adversity
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Monica Michelle is joined by Michelle Irving, a mentor for women around the world teaching them how to create a life filled with love, meaningful work and deep personal power.
Michelle lives with:
In this episode, Michelle and Monica discuss:
01:02 - Michelle’s Story
7:52 - Asking for Help
11:00- Becoming Vulnerable and Authentic
16:10 - Responding to Advice from Others
23:00- Queen of the Underworld
27:20 - Building the Skills and Foundation to Live Your Truth
30:15 - Dealing with the Death of Self
33:30 - Dating with a Chronic Illness
36:57 - Final Thoughts
The full transcript and all links mentioned can be found on the episode page on invisiblenotbroken.com Thank you and enjoy!
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Name*
Cosmo C
Pronouns
Fey/Fem
Website and handles you want published*
Twitter: @MaelstromMinded Twitch: @TheMaelstromMind
What is the name of your disorder, When did it present?
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Dashlane I was wrong name is Dashlane
Hitchhikers Guide to the Galaxy
Do you have any favorites? Comment below
Name *
Kimberlea Lemon
Disorder Info
What is your disorder? *
Cfs, fibromyalgia, IBS, anxiety, depression.
At what age did your disorder become a daily issue? *
12
Who were you before your illness became debilitating? *
Competitive gymnastics, dancer and horse rider - eventing and dressage.
What would you do if you were not dealing with your invisible illness? *
Horse riding and being really active!
What would you like people to know about your daily life? *
It is hard and I miss out on a lot but it is possible to live and be happy
What would make living and moving in the world easier for you? *
Public understanding, not just “I’m tired too”
Do you have any life hacks? *
Lots of being an OT means I can hack all of my life! I have very specific routines. I use a lot of technology.
What kind of support do you get from family or friends? *
My family is very supportive, none of my friends know.
Have you ever had someone, or a medical professional, not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *
Yes, many times. at 13 I was told I was depressed and put on antidepressants. At the same age, a dr told me to “eat” better however I was having allergic reactions to most foods!
How has your chronic illness affected your relationships? *
Struggling with relationships as I can’t keep up.
Is there anything you are afraid to tell people in your life? *
Not afraid, but I hate telling people I can’t do something due to my pain. I also haven’t told any friends due to the stigma around the disorders.
What is your best coping mechanism? *
Watching a specific show on Netflix on repeat.
What are you the most concerned about and the most hopeful for in the future? *
Concerned about not making any more improvements with my health. I can’t live by myself as I can’t do all the household tasks and maintenance. Most hopeful that they will be able to test and prove the illness I have.
Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.
How ots can help people with chronic illness
What makes you energized or enthusiastic? What drains you?
I enjoy working on my computer on little side projects. I get drain being around people and socializing at events.
Any favorite books or shows?
What is the hardest and/or best lesson your condition has taught you?
Hardest was giving up my dreams and passion with my horses. But it led me to OT where I can now help others.
What is the best purchase under $100 that helped your life
My new toy amazon echo - Alexa has been amazing as she reminds me of things and helps me spell words!
Any questions you think we should add to this list?
My occupation: I work as an OT with people after they have had a concussion. I would like to expand my work to include people with chronic illness.
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How Learning to Love Your Illness Can Make You a Better Person: An Interview with Ginevra Liptan, M.D.
-Ginevra Liptan, M.D.
Doctor Ginevra Liptan M.D. is a board-certified physician with fibromyalgia. She is one of the few specialists whose practice focuses solely on treating fibromyalgia, taking a holistic approach to care that combines western and alternative medicine. Today she’s on the show to tell her story and how learning to love her illness made her a better doctor and a better person.
Visit: http://www.drliptan.com/
In this episode we talk about:
-Dr. Liptan’s experience with fibromyalgia in medical school
-Treating herself as a science experiment in her chronic illness journey
-The effect of technology on doctor/patient relationships
-The importance of touch as part of healing and human connection
-The importance of information gathering as a form of self-care
-The need to allow doctors to be human
-The problem with punitive self-talk and self-care
-Self-care as self-compassion
-Kindness if self-talk
-The importance of language used in self-talk
-The value of setting the bar low for oneself
-The problem with New Year’s Resolutions
-The problem with social media culture and how it shapes expectations
-Coming to love one’s illness
-How learning to love her illness made Dr. Liptan a better doctor
-Fibromyalgia and depression
-The power of laughter
Other talking points
-Coming out about chronic illness
-Alternative medicine
-Supplements
-Journaling
-Exercise
-Sleep and sleep medications
-New Year’s resolutions
-TED talks
-Brene Brown
-Myofascial release
-Tami Stackelhouse, Fibromyalgia coach
-Medical school
-Benefits of CBD
-Challenges of traveling with fibromyalgia
-Financial limitations in care
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I made a decision: to be more committed to my happiness than my suffering.
Nitika Chopra has been a leader in the wellness industry since she founded her blog in 2010. As the host of the Talk Show Naturally Beautiful on Z-Living and as the on-air expert for Fresh on QVC, Nitika has always empowered women to use beauty as a tangible access point to self-love.
Known for her straight-forwarded tone and intense vulnerability, Nitika recently took everything she had learned from suffering with psoriasis and psoriatic arthritis for the past 27 years and created a conversation about self-love in the chronic illness community. With her experience in public speaking, her highly engaged social media following and her raw and honest writing that she shares weekly on her blog, Nitika is determined to get honest with her audience so that they can get honest with themselves in a way that truly transforms lives. You can join her at the first ever Chronicon in the fall of 2019 in New York City and daily on her instagram @NitikaChopra.
In this episode we talk about:
· Being human rather than an influencer
· Definition of self-love
· Dating someone who loves you despite your illness
And so much more!
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RATE & REVIEW 👍
➡️ Watch the video version of this interview
👉 find more episodes like this on Invisible Not Broken
👉 read and watch more content (or submit your own) on the #Wellspo blog
___
Episode supported by Wellacopia - the first matching site that helps people with chronic illnesses find their ideal, long-term, specialized practitioners (a similar approach to a dating site!).
Our mission is to help build better, trusting healthcare relationships and therefore, see better outcomes and quality of life.
👉 Find your ideal practitioners -https://www.Wellacopia.com
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Briana our resident Pain Management PA is back and just in time for Holiday Shopping! Here is a gift guide for your spoonie or for you. She has brought a bunch of products available on Amazon that she has found helpful for pain management and her own chiari malformation and Ehlers Danlos Syndrome.
Amazon pain relief product list
Migraine Hat $29.99 https://www.amazon.com/Migraine-Hat-Wearable-Reduce-Headache/dp/B01IBVP5QS/ref=sr_1_6_s_it?s=hpc&ie=UTF8&qid=1537980513&sr=1-6&keywords=ice+pack+for+headache
“Lazy glasses” to avoid neck strain $11.97 https://www.amazon.com/Flammi-Glasses-Horizontal-Spectacles-Watching/dp/B016F28L0M/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1537981727&sr=1-1&keywords=lazy+glasses
Living Life to the Fullest with EDS book- The Muldowney Protocol $49.95 https://www.amazon.com/gp/product/1478758880/ref=oh_aui_detailpage_o06_s01?ie=UTF8&psc=1
Cranio Cradle for Neck pain $36 https://www.amazon.com/gp/product/B005QBCL82/ref=oh_aui_detailpage_o02_s00?ie=UTF8&psc=1
Aspen Hard Cervical Collar $51.44 https://www.amazon.com/ProCare-Cervical-Collar-Pad-Set/dp/B0068QQ5UY/ref=sr_1_10_s_it?s=hpc&ie=UTF8&qid=1537980779&sr=1-10&keywords=aspen+cervical+collar
Back Nobber II trigger point tool $25.99 https://www.amazon.com/Pressure-Positive-Companys-Backnobber-Myofascial/dp/B0010B8CGM/ref=sr_1_26_s_it?s=hpc&ie=UTF8&qid=1537978231&sr=1-26&keywords=theracane&th=1
Therapy tool Combo pack (foam roller, trigger point tool, handheld roller tool, trigger point ball) $58.95 https://www.amazon.com/Body-Back-Companys-Tightness-Myofascial/dp/B00PJ8KCZG/ref=sr_1_27_m_sspa?s=hpc&ie=UTF8&qid=1537978284&sr=1-27-spons&keywords=theracane&th=1
Cervical traction collar device $18.99 https://www.amazon.com/gp/product/B078MCZSSS/ref=ox_sc_act_title_1?smid=APEPAF9WD0A2E&psc=1
Sobakawa cloud pillow $29.99 https://www.amazon.com/gp/product/B0037NX61W/ref=oh_aui_detailpage_o06_s00?ie=UTF8&psc=1
Total Pillow + ice pack 2 pack $14.99 https://www.amazon.com/Total-Pillow-Microbead-Portable-Support/dp/B01N2NNLSY/ref=sr_1_3?ie=UTF8&qid=1537980251&sr=8-3&keywords=total+pillow
Snuza Breathing monitor $109.79 https://www.amazon.com/gp/product/B008OJ7C6Y/ref=oh_aui_detailpage_o09_s00?ie=UTF8&psc=1
Artic Flex Neck Ice Pack for neck and shoulders $15.99 https://www.amazon.com/Arctic-Flex-Neck-Pack-Microwaveable/dp/B01M08DV3R/ref=pd_sim_121_1?_encoding=UTF8&pd_rd_i=B01M08DV3R&pd_rd_r=f98e6fc1-c1ab-11e8-afd4-5de77bfa64dd&pd_rd_w=RpZnm&pd_rd_wg=Z0xwZ&pf_rd_i=desktop-dp-sims&pf_rd_m=ATVPDKIKX0DER&pf_rd_p=18bb0b78-4200-49b9-ac91-f141d61a1780&pf_rd_r=CTPW89RGRAK81KRE6427&pf_rd_s=desktop-dp-sims&pf_rd_t=40701&psc=1&refRID=CTPW89RGRAK81KRE6427
Bauerfeind OmoTrain shoulder stabilizer brace $143.95 https://www.amazon.com/Bauerfeind-OmoTrain-Shoulder-Strained-Shoulders/dp/B000S01I1M/ref=sr_1_sc_11_s_it?s=hpc&ie=UTF8&qid=1537980664&sr=1-11-spell&keywords=baurfeind
NatraCure wrappable ice pack $9.99 https://www.amazon.com/NatraCure-Universal-Cold-Pack-Wrap/dp/B01H5QERAK/ref=sr_1_25_s_it?s=hpc&ie=UTF8&qid=1537980407&sr=1-25&keywords=ice%2Bpacks&th=1
Comfy sports bra $15.99 https://www.amazon.com/gp/product/B01MQGKYLI/ref=oh_aui_detailpage_o07_s02?ie=UTF8&psc=1
Plastic ring splints set of 3 $21.99 https://www.amazon.com/3-Point-Products-Oval-8-Finger-Splint/dp/B01INM8MO2/ref=sr_1_5_s_it?s=hpc&ie=UTF8&qid=1537980690&sr=1-5&keywords=ring%2Bsplints&th=1
5 pack of resistance bands 10.96 https://www.amazon.com/gp/product/B07738SKT5/ref=oh_aui_detailpage_o07_s00?ie=UTF8&psc=1
Wahl Deep Tissue Massage $36.72 https://www.amazon.com/Wahl-Percussion-Therapeutic-Professionals-04290-300/dp/B00BTYYCKK/ref=sr_1_3_s_it?s=hpc&ie=UTF8&qid=1537980170&sr=1-3&keywords=massager&th=1
AlignMed Zipper front compression/ posture shirt $95.00 https://www.amazon.com/ALIGNMED-Posture-Shirt-2-0-Zipper/dp/B00R8KA8X4/ref=sr_1_8?s=apparel&ie=UTF8&qid=1537981125&sr=1-8&nodeID=7141123011&psd=1&keywords=posture+shirt
Lumbar traction brace (inflatable) $56.68 (covered by many insurances) https://www.amazon.com/HONGJING-Traction-Decompression-Pressure-Gauge-Lower/dp/B07F932Y68/ref=sr_1_6_a_it?ie=UTF8&qid=1537980272&sr=8-6&keywords=back+traction+brace
Mueller adjustable back brace $18.95 https://www.amazon.com/Mueller-Adjustable-Back-Brace-Black/dp/B001OAXE0S/ref=sr_1_5_s_it?s=hpc&ie=UTF8&qid=1537980639&sr=1-5&keywords=mueller+back+brace
Sunbeam electric heating pad (large) $19.98 https://www.amazon.com/Sunbeam-King-Size-Electric-UltraHeat-Technology/dp/B000FGDDI0/ref=sr_1_9_s_it?s=hpc&ie=UTF8&qid=1537980363&sr=1-9&keywords=heat+pad
Joy-On Kegel exerciser $69.90 https://www.amazon.com/gp/product/B074S53CM1/ref=oh_aui_detailpage_o01_s00?ie=UTF8&psc=1
Aloe cadabra personal lubricant $10.95 https://www.amazon.com/Aloe-Cadabra-Personal-Lubricant-Unscented/dp/B0161J28AI/ref=sr_1_1_s_it?s=hpc&ie=UTF8&qid=1537980616&sr=1-1&keywords=aloe%2Bcadabra&th=1
Trigger point foam roller (hollow with PVC, travels well) $34.99 https://www.amazon.com/TriggerPoint-Roller-Instructional-Original-13-inch/dp/B0040EGNIU/ref=pd_bxgy_img_3?_encoding=UTF8&pd_rd_i=B0040EGNIU&pd_rd_r=9e18c7ac-c1b7-11e8-a6af-01eb2f54162e&pd_rd_w=EIefC&pd_rd_wg=7IoXw&pf_rd_i=desktop-dp-sims&pf_rd_m=ATVPDKIKX0DER&pf_rd_p=6725dbd6-9917-451d-beba-16af7874e407&pf_rd_r=XHRWYQS0RJJVA59A94T3&pf_rd_s=desktop-dp-sims&pf_rd_t=40701&psc=1&refRID=XHRWYQS0RJJVA59A94T3
Compression leggings $24.25 https://www.amazon.com/gp/product/B01EKHP7KG/ref=oh_aui_detailpage_o05_s00?ie=UTF8&psc=1
Handheld massage/ triggerpoint stick $9.95 https://www.amazon.com/PharMeDoc-Muscle-Roller-Massage-Stick/dp/B016AZD02I/ref=sr_1_47_s_it?s=hpc&ie=UTF8&qid=1537978284&sr=1-47&keywords=theracane
Mueller Hinged knee brace $53.58 https://www.amazon.com/Mueller-Hinged-Brace-Large-Black/dp/B00267SGA6/ref=sr_1_10_s_it?s=hpc&ie=UTF8&qid=1537980751&sr=1-10&keywords=mueller%2Bknee&th=1
Wool compression socks with arch support $13.99 https://www.amazon.com/gp/product/B06XBYFS7B/ref=oh_aui_detailpage_o03_s00?ie=UTF8&psc=1
Trigger point spiky balls, 4 pack $13.99 https://www.amazon.com/Massage-Trigger-Massager-Plantar-Fasciitis/dp/B07335P9FM/ref=sr_1_6?ie=UTF8&qid=1537978402&sr=8-6&keywords=triggerpoint+ball
New Balance arch support sandals $34.95 https://www.amazon.com/gp/product/B01ISPZGFC/ref=oh_aui_detailpage_o07_s02?ie=UTF8&th=1&psc=1
Not on Amazon but covered by insurance: Spinal Q brace by alignMed https://alignmed.com/products/womens-spinal-q
Cannabis products
Kiva mints, 2.5 mg THC http://kivaconfections.com/products/petra
Kush Queen CBD bath bombs https://www.kushqueen.shop/product-category/bath-bombs/
CBD living products https://www.cbdlivingwater.com/
Sootheen CBD tincture and pain relief cream (USE DISCOUNT CODE CBD25 for 25% off) www.sootheen.com
Remedio CBD 500 mg Vape Pen- available at pharmacies in 2018. Independently lab tested and the highest concentration of CBD available www.remediolabs.com
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Thank you!What is your disorder? *
Hashimotos and Alopecia areata
At what age did your disorder become a daily issue? *
15
Who were you before your illness became debilitating? *
I was frustrated but managing.
What would you do if you were not dealing with your invisible illness? *
I'd have the energy to match what is in my head to do and I would not be self-conscious about my hair
What would you like people to know about your daily life? *
That you can thrive with chronic illnesses
What would make living and moving in the world easier for you? *
a cure for both of these ailments
Do you have any life hacks? *
trying to find them! Meditation
What kind of support do you get from family or friends? *
I get a lot of support from my community, my friends and my family.
What is your best coping mechanism? *
meditation
What are you the most concerned about and the hopeful for in the future? *
that there will be more effective treatments
What is your favorite swear word?
fuck
Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.
my business - Jenny Eden Coaching
What is the hardest and/or best lesson your condition has taught you?
that I am resilient - much more so than I thought.
What is the best purchase under $100 that helped your life
using the Purple Carrot in home meal delivery service ($78 a month)
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You might remember Karina Strum, if you don’t here is her interview. This is where I got the tables reversed and she interviewed me about my daily life which absolutely includes daily dislocations, opioids, medical marijuana, and daily fear that a government and overzealous media will make getting the medication I need for daily survival harder or impossible to access. Along with the audio I’m including the video, no judgment on my messy room.
Please check out Karina Strum's blog
If you are interested here is Kyros and my panel about pain management and the opioid crisis and here is our about page if you would like to learn more about us and our medical conditions.
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