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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 ...
 
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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, his eyes were an issue, he was having difficulty with m…
 
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 feels like they have razor blades inside them. The pain …
 
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, social media, people being able to video tape mistakes, ac…
 
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 learn to walk. Surgery on the tendon on the right side …
 
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 outlet syndrome. She has experienced several head in…
 
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 Diabetes when he was 2. He started having accidents, dri…
 
Episode 30: Dafne Wiswell's Story of Rheumatoid Arthritis and Hashimoto's Thyroiditis In this episode, Dafne Wiswell shares her story of Rheumatoid Arthritis and Hashimoto’s Hypothyroidism. Through diet, spirituality/faith-based practices, setting boundaries, and practicing forgiveness, she was able to eliminate Rheumatoid Arthritis from her experi…
 
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 nearsighted, has dislocated lenses in his eyes, and l…
 
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 pain, and stiff hips. Doctors initially suspected poli…
 
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 debilitating. Our joints are supported by ligaments, tend…
 
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 started to take her complaints more seriously and tre…
 
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 school. She was shocked to be told she had the condition …
 
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 joints, inflammation of the liver or bile ducts, kid…
 
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, genitourinary tract, skin, and sinus system. When they go awry…
 
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, swelling of the affected limb, abnormal sweating and …
 
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 career shift to help individuals with EDS. Shortly after …
 
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 trigeminal nerve, aging, multiple sclerosis, a tumor, …
 
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 discuss the use of mobility aids, and awesome tips and tri…
 
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 dysautonomia. Symptoms vary widely by person but can include…
 
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 triggers are exposure to viruses, sunlight, and certain f…
 
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 joints, flat feet, stretch marks, heart conditions, …
 
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 misdiagnosed with Marfan’s Syndrome. It took 12 years fo…
 
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 disease. Symptoms include pain, swelling of the hands and f…
 
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 to have to tell their story repeatedly while in the ER…
 
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, infertility, changes in menstruation, and many others. There ar…
 
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 formally diagnosed in 2018/2019, a span of almost 15 yea…
 
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 made vis clinical examination and bloodwork. Treatment …
 
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 when insurance companies don’t pay for disability benefi…
 
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 pain, numbness/tingling, eye manifestations, fatigue…
 
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, he had an exploratory laparotomy, and the surgeon nick…
 
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, headaches, fevers, sun sensitivity, butterfly rash, Raynau…
 
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 tests, and dental tests and is treated with medication …
 
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 widespread joint and muscle pain, walking difficulty, dislocat…
 
Episode 3: Lewis Temple's story with Ehlers Danlos Syndrome In this episode, guest Lewis Temple shares his story of living life with Ehlers Danlos Syndrome (EDS). He also has POTS, craniocervical and atlantoaxial instability, migraines, dislocations, trigger finger, and TMJ. It took him years to finally get a proper diagnosis. He start getting form…
 
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 Syndrome, with a ton of associate conditions, such as POTS,…
 
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: Website Facebook Instagram Email Twitter Please subscrib…
 
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 syndrom…
 
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