I am not my pain

with
Melissa Adams

Let's bring living with pain and illness out of the shadows and into the light!

I Am Not My Pain is a weekly podcast where real warriors living with pain and illness discuss their challenges and victories including treatments and coping strategies that they use to get through each day.

Every story matters.

About Melissa Adams

CROPPED_Melissa_Headshot_Not_My_Pain

Melissa Adams has lived with moderate to severe pain for over twenty-three years. At 19, she was diagnosed with Arnold Chiari Brain Malformation, a structural defect in her brain causing pressure headaches and limb weakness.  The three neurosurgeries to correct this issue triggered massive headaches and neck pain.  Forced to leave college behind and move back home with her parents, she began the task of navigating through the tricky healthcare system, never-ending judgements and trying to manage her daily, persistent pain.  With the failure of close to fifty conventional and holistic treatments, her hope soon turned into hopelessness.  Her life became the pain.

Twelve years into her pain journey, she was traveling to see her grandfather in Detroit, Michigan when her mom mentioned meeting the founder of the Heroes Circle, Rabbi Elimelech Goldberg or Rabbi G for short.  The Heroes Circle utilizes karate with breathing and meditation to ease the pain and trauma of very sick children while empowering them to heal physically, spiritually, and emotionally.  Melissa reluctantly agreed and wondered how meditation for kids could possibly touch her pain.  Rabbi G explained the process of how pain is processed in the brain and with chronic pain, your brain will amplify and repeat the pain message over and over again; always stuck in the "flight or fight" response.  The pain is 100% REAL!  But you can help to stop the pain message using the breath and visualization. 

Sheer desperation for any relief Melissa gave it try with no expectations.  Over time and with practice, Melissa discovered she could lower her pain just by meditating- no extra pills, just meditating!  Melissa started volunteering for the Heroes Circle teaching the children the Heroes Circle meditation techniques.  Working with these courageous heroes and continuing her meditation practices, she began to recognize that she was not her pain!  This revelation changed her life.  

Melissa isn't totally pain free, but the pain is more manageable, and she has her life back!  Now her purpose is clear- to connect the extraordinary children of the Heroes Circle and their meditation techniques to the pain community! 

The first step in this journey is to hear from individuals living with pain and illness and establish the issues they face day to day from finding a diagnosis, the negative impact on everyday life and relationships, the toll on mental health, etc.  Therefore, "I Am Not My Pain" podcast was created.  She wants to hear your story with pain and illness, your struggles, and what treatments if any helped you.  She is here to support your journey and remind you that you are NOT alone, and you are NOT your pain!  You are so much more!

Episodes

E1: But You Don’t Look Sick!

Meet warrior and podcast host, Melissa Adams. Living with an invisible condition for over twenty years, Melissa has been the recipient of often well-intended comments with the most common phrase being, “But you don’t look sick.” Listen as Melissa and her best friend, Sommer, discuss Melissa’s journey of chronic pain and how certain comments can create deep shame and guilt. Let’s remove the stigma one is lazy or weak if suffering from illness and pain and realize the strength and fortitude it takes to manage it.

E2: The Toll of Being a Medical Marvel

Meet warrior, Chris L’Amarca. Her countless autoimmune, endocrine, and genetic conditions such as Ehlers Danlos, POTS and Addison’s disease have truly transformed her into a medical marvel. Her conditions require her to self-isolate even from her own children unless wearing a respirator and will sadly take her life prematurely. Tune in to hear this inspirational warrior and advocate share how she manages her traumas, her conditions and her mental health. Visit her YouTube channel by searching Chris L’Amarca on YouTube.

E3: The Long Journey to a Diagnosis

Meet warrior, Aly. Aly woke up from a nap one day and the right side of her body was paralyzed for hours. She began the two-year journey to find her correct diagnosis of Functional Neurological Disorder or FND- a complex and mysterious condition causing Aly temporary paralysis, seizures, migraines and more. Listen as she shares her experience navigating the symptoms and doctors to finally reach her diagnosis.

E4: Navigating Chronic Illness and Our Mental Health – Part 1

Meet warrior, Danielle. Danielle is a licensed mental health therapist, a credentialed substance abuse counselor and manages a myriad of conditions such as fibromyalgia, Hashimoto’s, psoriatic arthritis, osteoarthritis, degenerative disc disease, tendonitis and more. Danielle realized quickly that navigating the world of chronic illness is not easy. She must handle not only her symptoms, but never-ending appointments, medications, their side effects, failed treatments, and even skeptical, disbelieving doctors and loved ones. Listen to her story and how she copes with her all the facets of living with her chronic conditions.

E5: Navigating Chronic Illness and Our Mental Health – Part 2

Continuing our discussion with warrior, Danielle. Tune in as this licensed mental health therapist and credentialed substance abuse counselor shares her professional recommendations for coping with chronic illness and pain.

E6: Invisible Illness, Real Pain

Meet warrior, Wendy Maxwell. Wendy is the epitome of the adage, never judge a book by its cover! She appears healthy on the surface, but she is in fact, disabled and suffers from many invisible illnesses such as chronic fatigue syndrome, fibromyalgia, Epstein Barr, hypothyroidism, and multiple chemical sensitivity. Listen to Wendy as she shares her story, the knowledge she has gained and how she discovered new purpose in her life as a teacher disability advocate and a mental health coach. Let’s redefine disability! If you are interested in Wendy’s services as a mental health coach, you can contact her by phone at 972-619-5254 or email at wmaxconsulting@gmail.com. To find her YouTube channel, search Life with Spirit Chronic Illness. 

E7: Acknowledge Our Interdependence- A Perspective on Caregiving

Meet warrior, Lisa Rutledge. Lisa is an author and owner of her own editing and publishing company and has spastic quadriplegic cerebral palsy, anxiety and obsessive-compulsive disorder. For her, caregivers are essential to her everyday life. Join us as Lisa discusses her experience with caregiving and the important lessons she has learned, including how to maintain her mental health and her advice to those needing care as well as for caregivers. “We need to acknowledge our interdependence. We all have strengths and limitations. We all need each other.” If you are interested in Lisa’s editing services or reading her published writing, please visit lisarutledgeauthor.com and to read her Christian blog, visit sittingwiththescared.com.

E8: The Identity Shift

Meet warrior, Leanne Million. Leanne’s identity was one of drama teacher, actress and all around go getter until she experienced a concussion in a car accident. Managing her physical pain and issues with her neurological function from post-concussion syndrome, Leanne had to leave her job and felt huge pieces of her identity slip away, a common occurrence in the lives of the chronically ill. Tune in as we hear Leanne reveal how she began the process of shifting her mindset on her identity and how she was able to recreate purpose and meaning in her life. If you are interested in Leanne’s services as a Certified Life, Relationship and Sexuality Coach, EFT or Reiki Practitioner, visit leannemillion.com or @leannemillion on Instagram.

E9: The Stigma of Mental Illness- When Your Symptoms Are Dismissed

Meet warrior, Mindy. Mindy is among one and five Americans who experience mental illness. Living with varying levels of depression and anxiety for most of her life, Mindy knows her conditions and symptoms well. Therefore, when her widespread chronic pain started, she sought help right away only to have her pain be automatically dismissed as part of her mental illnesses. Listen to Mindy explain how her doctors’ dismissive behavior has affected her search for answers and her mental health.

E10: Surviving CRPS Through Peer Advocacy

Meet warrior, Melissa Wardlaw. Melissa is diagnosed with Complex Regional Pain Syndrome type 2 as a result of a non-paralyzing injury. Melissa learned early the value of being her own advocate. But she also realized the tremendous gap in support which is why this fierce warrior spends her time providing free peer counseling and advocating for CRPS and chronic illness awareness. Listen to Melissa share incredible insight into CRPS as well as offer valuable advice for living with chronic illness. If you are interested in online peer counseling with Melissa or if you live in the Metro Atlanta area and want to attend her in-person empowerment group for CRPS/RSD, chronic illness and pain, contact Melissa at crpsatl@gmail.com.

E11: Dismissiveness, Gaslighting and Judgments: The Fight for Respectful Care- Part One

Meet warrior, Courtney. Courtney manages multiple, rare conditions such as POTS and Ehlers Danlos as well as struggles with unexplained symptoms. Seeking treatment in her small area is far from easy as she continuously confronts dismissiveness, gaslighting and judgments from the medical community and even from her friends. Listen to Courtney share her heartbreaking story that is all too common for the chronically ill.

E12: Dismissiveness, Gaslighting and Judgments: The Fight for Respectful Care- Part Two

Resuming our discussion with warrior, Courtney as she continues to be bombarded with dismissiveness, gaslighting and judgements from her doctors and even from her closest friends.

E13: Working with a Chronic Illness

Meet warrior, Jae Cobb. Diagnosed with lupus, fibromyalgia, CRPS and several other conditions, Jae juggles a lot of symptoms while working a full-time job. Listen as Jae discusses how she manages working with her chronic conditions and how finding her passion motivates her to overcome her pain daily. Follow Jae’s journey on Facebook and Instagram @chronicallyillandstrong or find her blog on Tumblr at https://simplelittlebrowngirljae.tumblr.com/.

E14: Breaking the Misconceptions of Diabetes- Advocating for a Better Tomorrow

Meet warrior, CJ. CJ manages latent autoimmune diabetes. Highly focused on her diet, CJ developed an eating disorder and became malnourished. Education and support from the diabetes community opened the door for CJ to seek help for her eating disorder, break her own misconceptions and fears about diabetes, and fuel her passion to advocate for herself and others. Tune in to hear CJ’s journey and how her advocacy is breaking down barriers for a better tomorrow! Follow CJ’s journey and advocacy work @thegeneticdiabeticblog on Instagram and The Genetic Diabetic on Facebook. Her children’s book, My Diabetic Mama, is for sale now on Amazon.

E15: Parenting while Chronically Ill

Meet warrior, Kris McElroy. Kris is a 37-year-old autistic biracial black transgender man with multiple disabilities and chronic illnesses such as rheumatoid arthritis and Complex Hereditary Spastic Paraplegia. Kris is a passionate artist, advocate, freelance writer, and most importantly, a dad to a beautiful 2-year-old-daughter. Kris will be the first to say he was both afraid and elated to be a dad. Listen to Kris explain how he manages parenting while chronically sick including the ability to be flexible, dad guilt and the importance of communication with his wife. To learn more about Kris, go to his website at https://sites.google.com/view/krismcelroysite/home.

E16: Self-Management Tools for Chronic Illness- Part One

Meet warrior, Andrea (Andy) Kottmeier Moar. Andy is diagnosed with Cushing’s disease, kidney disease, neuropathy, type 1 diabetes, vitiligo, and more. Andy taught a six-week chronic disease self-management course called, “Better Choices, Better Health” in Alberta, Canada. Tune in to Andy share her story and what important self-management tools we can use when living day-to-day with chronic conditions.  

E17: Self-Management Tools for Chronic Illness- Part Two

Continuing our conversation with warrior, Andy Kottmeier Moar as she offers more self-management tools for the chronically ill.

E18: Brace for Impact- Chronic Illness Collides with Everyday Life

Meet warrior, Jen. Jen suffers from Functional Neurological Disorder causing severe dizziness, tiredness, migraines, and cognitive issues. Once a tax consultant, Jen is now disabled and feels the impact of her condition in all areas of her life. Listen as Jen explains how she adjusts her everyday life from cooking to running errands around her condition and her small town and how she finds humor where she can.

E19: Being a Chronically Ill Woman in Today’s Healthcare System

Meet warrior, Saramax Guttman. Saramax has been diagnosed with celiac disease, epilepsy, psoriatic arthritis and lupus and has suffered with mental illnesses such as OCD since childhood. Saramax knows firsthand how the healthcare system can view and treat you differently as a woman with a chronic illness. Tune in as she shares her experience and how she promotes awareness on living with chronic illness and supports adults with developmental disabilities as an employment counselor. Read Saramax’s article mentioned in the podcast here: https://themighty.com/2022/05/working-full-time-with-chronic-illness-and-making-choices/. This interview was recorded prior to the overturn of Roe vs Wade.

E20: Finding Acceptance and New Purpose with Chronic Illness- Part One

Meet warrior, Samantha Moss. Sam had a successful management career in financial services until 2014, when she had a severe bowel prolapse resulting in a permanent colostomy. Many diagnoses followed including a complex idiopathic Rare Bone Disease and rheumatoid arthritis. Sam constantly struggles with pathological broken bones and a future filled with unpredictability. Tune in to hear Sam’s amazing story of finding acceptance and embracing her new life as a patient advocate, blogger, podcaster, and author, with her biggest passion being her global Facebook support group called, Medical Musings with Friends; now 1,800 members strong. To learn more about Samantha Moss or her new book, you can visit her blog, “My Medical Musings”  https://mymedmusings.com/ or listen to her Podcast, “Medical Musings With Sam” https://anchor.fm/my-medical-musings.

E21: Finding Acceptance and New Purpose with Chronic Illness- Part Two

Continuing our conversation with warrior, Samantha Moss. Listen in as Sam shares more about how she finds acceptance and embraces her new life as a patient advocate, blogger, podcaster, and author, with her biggest passion being her global Facebook support group called, Medical Musings with Friends; now 1,800 members strong. To learn more about Samantha Moss or her new book, you can visit her blog, “My Medical Musings”  https://mymedmusings.com/ or listen to her Podcast, “Medical Musings With Sam” https://anchor.fm/my-medical-musings.

E22: Managing Chronic Pain in Relationships with Loved Ones

Meet warrior Kelly Douglas. Kelly is a mental health and disability advocate, a Contributor Editor for the Mighty and a Senior Editor for Unwritten. Kelly has lived with cerebral palsy since birth and has also experienced intermittent chronic pain for just over a decade. Managing her disability and her pain creates many challenges in her life — especially with her mental health. Listen as Kelly shares her story and reveals how she manages her mental health while trying to explain her pain to her healthy loved ones. To learn more about Kelly Douglas, you can follow her on Instagram @kellychristine333 or on Twitter @kellywrites333.

E23: Growing Up with Chronic Illness

Meet warrior, Elianna. After fracturing her growth plate in the fifth grade, Elianna was diagnosed with CRPS, fibromyalgia and Oppositional Defiant Disorder and so began her young life living with illness and pain. More diagnoses followed including chronic fatigue syndrome, migraine, chronic hip bursitis and a rare digestive issue called “dumping syndrome.” Tune in as Elianna shares how she managed her illnesses and the medical system at a young age and how she attributes living with chronic illness as a child to being able to cope with the pain she faces today.

E24: Navigating Chronic Illness in a World That Wasn’t Made for Us

Meet warrior, Kat Harrison. Kat is a fierce advocate and writer who lives with chronic, daily migraine, bilateral vestibular loss, oscillopsia, chronic ear disease and a rare headache condition called SUNCT Syndrome. Tune in as Kat shines a realistic light on the everyday decisions the chronically ill face. She’ll also share how to increase accessibility and inclusion in the workplace, home and beyond. Kat is the community content producer at the Mighty and the author of the award-winning children’s book Surgery on Sunday, the newly released children’s book, Migraine and Mia and numerous articles for magazines such as Real Simple and digital outlets such as MSN. To learn more about Kat and her writing, go to her website https://www.katwritesforyou.com/.  

E25: The Burden of Losing Our Independence when Chronically Ill

Meet warrior, Carolanne Monteleone. Carolanne was a bright-eyed 21-year-old woman when chronic illness struck her life. Carolanne quickly lost huge pieces of her independence having to move back in with her parents and depending on them for help with ER visits, doctor’s appointments, medications, showers and her feeding tube. Eventually diagnosed with many chronic conditions such as gastroparesis, dysautonomia, polycystic ovary syndrome, bile reflux, and chronic fatigue syndrome, Carolanne has dealt with many ups and downs in her health and the ability to care for herself. Listen as Carolanne reveals the impact of losing her independence and how she manages the loss, her mental health and life by writing, advocating, and leaning on her loved ones. To read her published articles, blog and more, go to her website at https://aheartforhumanity.wordpress.com/. You can also follow Carolanne on Instagram @carolannemaria.

E26: The Difficulties with Having No Support

Meet warrior, Kale Sastre. Kale is an anthropologist and avid adventurer who grew up being sick a lot, but her family wouldn’t believe her or take her pain seriously. Kale learned to be very independent hiding her symptoms until they worsened. She was later diagnosed with migraine, spine issues, fibromyalgia, depression, anxiety and PTSD, resulting in severe pain, exhaustion, and balance issues. Listen as Kale shares her story, the hardships of managing her chronic conditions essentially by herself and the outlet writing has provided. To read her articles on chronic illness or her published works of fiction, go to her website at https://ksastre.wordpress.com.

E27: Perseverance when Living with Chronic Conditions

Meet warrior, Jenny Jones. Jenny believes persistence is key to living with all the aspects of her two rare, chronic conditions called Familial Adenomatous Polyposis and Short Bowel Syndrome. Diagnosed with FAP as a child, she underwent a total colectomy at age nine. Complications led to six additional surgeries and an eighth surgery to remove her gall bladder. With encouragement from a community FAP page, Jenny started a blog in 2012 called Life’s a Polyp and began openly sharing all aspects of living with her rare conditions. The blog lead her to start a YouTube vlog, write a children’s book called Life’s a Polyp with Zeke and Katie and become an important advocate for her disease. Tune in as Jenny explains how perseverance helped her find the best medical care, be proud of her scars and find her purpose in life. To learn more about Jenny or to support The National Organization for Rare Disorders Familial Adenomatous Polyposis Research Fund, go to her website at https://www.lifesapolyp.com.

E28: Playing Doctor Roulette

Meet warrior, Nicole. Nicole is a 30-year-old teacher managing multiple diagnoses including fibromyalgia, arthritis, chronic migraine, MCTD and more. Nicole has been misdiagnosed, judged, and dismissed by doctors as she constantly struggles to find the right care covered by her health insurance. Listen as Nicole shares her experience with doctors, good and bad, and how those experiences affect her mental health. Doctors who listen make all the difference. To help Nicole and her team at One Day At A Time, with their fundraising efforts for the American Foundation for Suicide Prevention, go to https://bit.ly/3dwLkbc.

E29: Breaking the Suffering Cycle- Part One

Meet warrior, Isaac Kakone. In August 2019, Isaac was in a horrible motorcycle accident. The accident ripped all the nerves connecting his left arm to his brain, causing severe chronic nerve pain and essentially a dead left arm. Isaac’s experience with pain and suffering thrust him into a very dark place and into addiction as a way to cope. Realizing he could not live this way anymore, he began educating himself on the brain’s response to pain and reflected on his behavior and choices, discovering his true core values. Tune in as Isaac shares how he faced his pain and addiction and learned to find a new beginning as a father, husband, motivational speaker and overall human being. Isaac believes his experience is “an opportunity to help others survive and thrive despite the chronic pain.” To learn more about Isaac or to have him speak at your next event, you can go to his website https://www.recoverythroughvalues.com.

Resources

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