The Spoonie Struggle
by Jessica Temple
The Spoonie Struggle is about the raw, honest look at living life with chronic illnesses and chronic pain conditions. Spoonies of all types are welcome to join us, but we will have a heavier focus on the lesser common, lesser understood, and difficult to diagnose conditions, such as Ehlers Danlos, Marfan's, Ankylosing spondylitis, Sjogren's syndrome, lupus, multiple sclerosis, sickle cell anemia, and endometriosis. In this show, we will discuss our own experiences of each aspect of life with our chronic health conditions, speak with other spoonies about their experiences, discuss coping, advocating, and self-care related to chronic illness, provide helpful and well-vetted resources, and interview professionals who are experts in the field to gain further insight into our conditions and learn about ways to educate family, friends, and doctors, advocate for ourselves, cope with our conditions, and hopefully, thrive! This is a great way to join a like-minded community and to meet people w
Episodes
-
Spoonie Dating and Divorce
Episode 49: Spoonie Dating and Divorce In this episode, Jessica discusses the trials and tribulations of dating and divorcing while chronically ill. She ponders lots of questions about the "how to" or dating. Website Facebook Instagram Email Twitter Please subscribe to our podcast in the iTunes...
-
Spoonie Self-Care
Episode 48: Spoonie Self-Care In this episode, Jessica offers tons of cheap, quick, and easy suggestions for ways to fit in self-care for spoonies. Website Facebook Instagram Email Twitter Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star...
-
Distress Management Skills For Beating Pain and Burnout
Episode 47: Distress Management Skills For Beating Pain and Burnout In this episode, Jessica discusses distress tolerance/management strategies from Dialectical Behavior Therapy and how they can assist with pain, burnout, depression, and anxiety. She provides tons of practical tips. Website...
-
Beating Pain and Spoonie Burnout Through Mindfulness
Episode 46: Beating Pain and Spoonie Burnout Through Mindfulness In this episode, Jessica discusses how mindfulness can benefit everyone and how it can help minimize pain, anxiety, depressed mood, and burnout. She provides tons of mindfulness strategies. Website Facebook Instagram Email Twitter...
-
The Spoonie Burnout
Episode 45: The Spoonie Burnout In this episode, Jessica discusses the reality of burnout when you have chronic illness. She discusses what it is, signs and symptoms, causes, and what to do about it. Website Facebook Instagram Email Twitter Please subscribe to our podcast in the iTunes store, or...
-
Advocacy In The Medical World
Episode 44: Advocacy In The Medical World In this episode, Jessica provides tons of useful tips and tricks for making medical appointments work for you, minimize gaslighting and discrimination, and minimize any mistakes or errors. Website Facebook Instagram Email Twitter Please subscribe to our...
-
Spoonie Self-Advocacy
Episode 43: Spoonie Self-Advocacy In this episode, Jessica discusses tips and tricks for advocating for yourself on a daily basis, with yourself, friends, family, work, and the community. Website Facebook Instagram Email Twitter Please subscribe to our podcast in the iTunes store, or wherever you...
-
Spoonie Parenting of Special Needs Kids
Episode 42: Spoonie Parenting of Special Needs Kids In this episode, Jessica provides updates on the struggles of being a parent with a chronic illness/disability while also raising two children with special needs. She talks about the state of finances for children and adults with chronic needs,...
-
Using Massage and Movement for Pain Management With Guest Sam Visnic
Episode 41: Using Massage and Movement for Pain Management With Guest Sam Visnic In this episode, guest Sam Visnic discusses using physical therapy, movement, and massage therapy to assist with chronic pain management. When working with a new client, he always starts with a thorough evaluation…
more -
Darren Radke's Experience Living With Lupus and Antiphospholipid Syndrome
Episode 40: Darren Radke's Experience Living With Lupus and Antiphospholipid Syndrome In this episode, guest Darren Radke shares his experience living with Lupus and Antiphospholipid Syndrome. He also was diagnosed as a having a hippocampal cyst in his brain, an issue with a heart valve, and a…
more -
The Ins and Outs of Antiphospholipid Syndrome With Guest Dr. Jill Schofield
Episode 39: The Ins and Outs of Antiphospholipid Syndrome With Guest Dr. Jill Schofield In this episode, guest Dr. Schofield discusses Antiphospholipid Syndrome. APS is a complex multisystem autoimmune disease. It is often comorbid with Lupus. It can be primary or secondary. Females are more…
more -
Updates, Crises, and Overwhelm
Episode 38: Updates, Crises, and Overwhelm In this episode, Jessica gives updates on her life and the life of her family. She discusses updates on her health conditions and recent surgery, crazy stressors, and mental health difficulties that accompany autism. She discusses how hard it is to get...
-
Neuropsychological Symptoms of Conditions Associated With Ehlers Danlos Syndrome With Guest Dr. Veronica Burton
Episode 38: Neuropsychological Symptoms of Conditions Associated With Ehlers Danlos Syndrome With Guest Dr. Veronica Burton In this episode, Dr. Veronica Burton discusses the neuropsychological symptoms of complications that can occur from Ehlers Danlos Syndrome. For craniocervical instability…
more -
Treatment and Management of Ehlers Danlos With Guest Dr. Alissa Zingman
Episode 37: Treatment and Management of Ehlers Danlos With Guest Dr. Alissa Zingman In this episode, Dr. Alissa Zingman discusses management and treatment of Ehlers Danlos Syndrome. Dr. Zingman started to have symptoms of EDS in elementary school, with stomach aches and heel pain. She was very...
-
Kim "Kid" Curry's Story of Living With Multiple Sclerosis
Episode 36: Kim "Kid" Curry's Story of Living With Multiple Sclerosis In this episode, Kim "Kid" Curry discusses his experience with Multiple Sclerosis. Early on in his career, he started feeling stinging sensations in his legs, but he wrote it off as possibly being bitten by fire ants. Later…
more -
Boronia Fallshaw's Story of Living With Vulvodynia
Episode 35: Boronia Fallshaw's Story of Living With Vulvodynia In this episode, Boronia Fallshaw discusses her experience with vulvodynia. Beginning with her first experience with intercourse at age 18, Boronia began to experience vulvodynia. In this condition, every time a person has sex, it…
more -
Health Coaching For Teens With Guest Denise Archilla, MSW
Episode 34: Health Coaching For Teens With Guest Denise Archilla, MSW In this episode, guest Denise Archilla discusses chronic illness coaching! Some struggles young folks with chronic illnesses face include unpredictability of age during a time of transition, trying to blend in with peers…
more -
Paul Forchione's Story of Living With Cerebral Palsy
Episode 33: Paul Forchione's Story of Living With Cerebral Palsy In this episode, Paul Forchione shares his story of living with Cerebral Palsy. He was diagbnosed with CP at 2-3 months old. The CP affects mostly his right side. He started physical therapy on a daily basis, which allowed him to...
-
Hannah Budde's Story of Hypermobile Ehlers Danlos Syndrome and Mild TBI
Episode 32: Hannah Budde's Story of Hypermobile Ehlers Danlos Syndrome and Mild TBI In this episode, guest Hannah Budde shares her story with mTBI and hypermobile EDS. She also has POTS, pelvic floor dysfunction and prolapse, interstitial cystitis, craniocervical instability, asthma, and thoracic...
-
Dafne Wiswell's Story of Raising Children With Type 1 Diabetes and Ankylosing Spondylitis
Episode 31: Dafne Wiswell's Story of Raising Children With Type 1 Diabetes and Ankylosing Spondylitis In this episode, Dafne Wiswell discusses her son's experience with Diabetes Type 1 and her daughter's experience with juvenile arthritis and Ankylosing Spondylitis. Her son was diagnosed with...
-
Raising a Child With Marfan Syndrome With Guest Allison Pullins
Episode 29: Raising a Child With Marfan Syndrome With Guest Allison Pullins In this episode, Allison Pullins discusses her experience raising a child with Marfan Syndrome. James was diagnosed with this connective tissue disorder when he was 2 years old. He experiences an aortic aneurysm, is very...
-
David Einsohn's Story With Ankylosing Spondylitis
Episode 28: David Einsohn's Story With Ankylosing Spondylitis In this episode, we discuss David Einsohn's story with Ankylosing Spondylitis. David started experiencing problems with his legs and back when he was almost 10. He started having difficulty breathing, weakness in his legs, lower back...
-
Making Physical Therapy Work For Ehlers Danlos Syndrome with Guest Dr. Logan Swisher
Episode 27: Making Physical Therapy Work For Ehlers Danlos Syndrome with Guest Dr. Logan Swisher In this episode, Dr. Logan Swisher discusses physical therapy and Ehlers Danlos Syndrome. EDS is a connective tissue disorder that affects the person's whole body. Symptoms can range from mild to...
-
Amanda Semenoff's Story of Living With Crohn's Disease
Episode 26: Amanda Semenoff's Story of Living With Crohn's Disease In this episode, Amanda Semenoff discusses her experience with Crohn's disease. Misdiagnoses included psychiatric conditions, lupus, pregnancy, eating disorders, and stress. She found that once she had a formal diagnosis, doctors...
-
Alex Haut's Story with Ehlers Danlos Syndrome
Episode 25: Alex Haut's Story with Ehlers Danlos Syndrome In this episode, Alex Haut discusses her experience with growing up with Ehlers Danlos Syndrome, arthritis, and ulnar nerve entrapment. She also has GI and liver issues. She was diagnosed by her pediatrician when she was in elementary...
-
Let's Talk About Crohn's Disease
Episode 24: Let's Talk About Crohn's Disease Crohn's Disease is one type of inflammatory bowel disease and differs by person. Symptoms include diarrhea, fever, fatigue, abdominal pain and cramping, blood in the stool, mouth sores, reduced appetite, weight loss, inflammation of the skin, eyes, and...
-
An Insider's Look At MAST Cell Activation Syndrome With Guest Dr. Jill Schofield
Episode 23: An Insider's Look At MAST Cell Activation Syndrome With Guest Dr. Jill Schofield In this episode, Dr. Jill Schofield discusses MAST cell activation syndrome. MAST cells are used to fight off foreign invaders and are present in all areas of the body, but most in the GI tract,...
-
Let's Talk About Complex Regional Pain Syndrome
Episode 22: Let's Talk About Complex Regional Pain Syndrome Complex Regional Pain Syndrome is a condition defined by prolonged pain and inflammation following an injury to the arm or leg. Symptoms include constant or fluctuating pain after contact or use, changes in skin temperature, skin color,...
-
Managing Chronic Pain With Dr. Linda Bluestein
Episode 21: Managing Chronic Pain With Dr. Linda Bluestein In this episode, Dr. Linda Bluestein discusses Ehlers Danlos Syndrome, Fibromyalgia, and chronic pain. Dr. Bluestein noted that it took her over 40 years to get diagnosed with EDS, and once her symptoms caught up with her, she made a…
more -
Let's Talk About Trigeminal Neuralgia
Episode 20: Let's Talk About Trigeminal Neuralgia Trigeminal neuralgia is a chronic pain condition that affects the trigeminal nerves. Symptoms include bouts of facial pain, aching and burning in the face, and pain that gets worse over time. It is usually caused by disruption of function of the...
-
Monica Michelle's Story With EDS, CRPS, MCAS, and POTS
Episode 19: Monica Michelle's Story With EDS, CRPS, MCAS, and POTS In this episode, Monica Michelle discusses her chronic illness story with EDS, MCAS, POTS, Fibromyalgia, CRPS, and more. Monica and Jessica go on a lot of fun soap-box rants about the state of healthcare and disability. They…
more -
Let's Talk About Postural Orthostatic Tachycardia Syndrome
Episode 18: Let's Talk About Postural Orthostatic Tachycardia Syndrome In this episode, we discuss all things POTS. POTS is a type of dysautonomia. The episode discusses the autonomic nervous system as well as the sympathetic and parasympathetic nervous systems and how they play a role in...
-
Dawn Veselka's Story of Raising a Child With Mixed Connective Tissue Disease
Episode 17: Dawn Veselka's Story of Raising a Child With Mixed Connective Tissue Disease In this episode, guest Dawn Veselka discusses her experience raising a daughter with a mixed connective tissue disorder. Her mix is juvenile arthritis, scleroderma, Raynaud's and dermatomyositis. Sadie's...
-
Let's Talk About Marfan Syndrome
Episode 16: Let's Talk About Marfan Syndrome In this episode, we discuss all things Marfan Syndrome. Marfan Syndrome is a genetic condition that affects the connective tissues. Symptoms include long arms, legs, and fingers, tall and thin body type, curved spine, chest sticking out or in, flexible...
-
Lara Bloom's, of the Ehlers Danlos Society, Story With Ehlers Danlos and Associated Syndromes
Episode 15: Lara Bloom's, of the Ehlers Danlos Society, Story With Ehlers Danlos and Associated Syndromes In this episode, President and CEO of the Ehlers Danlos Society, Lara Bloom shares her story of living with Ehlers Danlos Syndrome. She was diagnosed with EDS at age 24, but was initially...
-
Let's Talk About Sickle Cell Disease
Episode 14: Let's Talk About Sickle Cell Disease In this episode, we discuss all things Sickle Cell Disease. Sickle Cell Disease is an inherited red blood cell disorder in which there aren't enough healthy red blood cells to carry oxygen throughout the body. There are multiple types of the…
more -
Smooth Sailing Spoonie ER Visits With Guest Dr. Harvey Castro
Episode 13: Smooth Sailing Spoonie ER Visits With Guest Dr. Harvey Castro In this episode, we discuss making ER visits more smooth sailing for spoonies and zebras. Guest Dr. Harvey Castro feels that it is important for the ER docs to spend adequate time with the patient, and for the patient not…
more -
Let's Talk About Endometriosis
Episode 12: Let's Talk About Endometriosis In this episode, we discuss all things Endometriosis. Endometriosis is a painful disorder where the tissue that typically lives inside the uterus begins to grow outside the uterus. Symptoms can include pain, urinary or bowel symptoms, fatigue…
more -
Shayla Symone's Story With Ehlers Danlos Syndrome and Racial Discrimination
Episode 11: Shayla Symone's Story With Ehlers Danlos Syndrome and Racial Discrimination In this episode, we discuss Shayla Symone's story with Ehlers Danlos Syndrome. She also has POTS, IBS, and Fibromyalgia. Shayla began to experience symptoms of EDS when she was in elementary school and was...
-
Let's Talk About Ankylosing Spondylitis
Episode 10: Let's Talk About Ankylosing Spondylitis In this episode, we discuss all things Ankylosing spondylitis. Ankylosing spondylitis is a form of arthritis that affects the spine and other joints, causing chronic pain. It can also affect the eyes. It is thought to be genetic. Diagnosis is…
more -
Disability Law With Guest Andrew Kantor
Episode 9:Disability Law With Guest Andrew Kantor In this episode, we discuss disability law (ERISA law). Disability discrimination is defined as when you need accommodations and your workplace denies you, even though it would allow you to continue to do your job. Disability law is related to…
more -
Let's Talk About Multiple Sclerosis
Episode 8: Let's Talk About Multiple Sclerosis In this episode, we discuss all things Multiple sclerosis. Multiple sclerosis is a chronic disease of the central nervous system, that attacks the myelin that covers the nerve fibers in the brain and spinal cord. Symptoms vary widely, but can include...
-
Chase Joseph's Story With RSD, EDS, Tics, Dysautonomia, and Autism
Episode 7: Chase Joseph's Story With RSD, EDS, Tics, Dysautonomia, and Autism In this episode, we discuss Chase Joseph's story. Chase was diagnosed with autism, Ehlers Danlos Syndrome, OCD, ADHD, dysautonomia (neutrally mediated hypertension), costochondritis, and gastroparesis. When he was 14…
more -
Let's Talk About Lupus
Episode 6: Let's Talk About Lupus In this episode, we talk about all things Lupus. Lupus (focusing on SLE) is a chronic autoimmune disease that causes inflammation and pain in any part of the body. There are several different types of lupus. Symptoms include fatigue, joint pain or swelling,...
-
Let's Talk About Sjogren's Syndrome
Episode 5: Let's Talk About Sjogren's Syndrome In this episode, we discuss all things Sjogren's Syndrome. Sjogren's Syndrome is an autoimmune disease that causes dry eye, dry mouth, fatigue, and joint pain. Additionally, it can cause damage to other organs. It is diagnosed via blood tests, eye...
-
Let's Talk Ehlers Danlos Syndrome
Episode 4: Let's Talk Ehlers Danlos Syndrome In this episode, we discuss all things Ehlers Danlos Syndrome. EDS is a group of usually inherited connective tissue disorders characterized by joint hypermobility, skin hyperextensibility, and tissue fragility. Symptoms vary, but can include…
more -
Jessica Temple's Story with Ehlers Danlos Syndrome
Episode 2: Jessica Temple's Story with Ehlers Danlos Syndrome In this episode, host Jessica Temple shares her chronic illness journey. She discusses that her medical journey started at age 2, and finally got a formal accurate diagnosis in November 2020. She has a diagnosis of Ehlers Danlos...
-
The Spoonie Struggle
Episode 1: The Spoonie Struggle In this episode, host Jessica defines what a "spoonie" is, as well as the name "The Spoonie Struggle." She discusses the purpose of and vision of the podcast. She also rants about everyone's favorite questions "what is your current pain level from 0-10?" Links:...
-
The Spoonie Struggle Trailer
The Spoonie Struggle is about the raw, honest look at living life with chronic illnesses and chronic pain conditions. Spoonies of all types are welcome to join us, but we will have a heavier focus on the lesser common, lesser understood, and difficult to diagnose conditions, such as Ehlers…
more
About this show
The Spoonie Struggle is about the raw, honest look at living life with chronic illnesses and chronic pain conditions. Spoonies of all types are welcome to join us, but we will have a heavier focus on the lesser common, lesser understood, and difficult to diagnose conditions, such as Ehlers Danlos, Marfan's, Ankylosing spondylitis, Sjogren's syndrome, lupus, multiple sclerosis, sickle cell anemia, and endometriosis. In this show, we will discuss our own experiences of each aspect of life with our chronic health conditions, speak with other spoonies about their experiences, discuss coping, advocating, and self-care related to chronic illness, provide helpful and well-vetted resources, and interview professionals who are experts in the field to gain further insight into our conditions and learn about ways to educate family, friends, and doctors, advocate for ourselves, cope with our conditions, and hopefully, thrive! This is a great way to join a like-minded community and to meet people w
Hosted by
Jessica Temple