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 who are in the same boat as you. And, to realize that you are not alone. This is a nonjudgmental space to help each other through our chronic illness journey, to be an actual self again, and to make thriving in life an actual possibility.
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 store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 Facebook Instagram Email Twitter Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 Please subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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, the difficulty of finding adequate treatment, and living life in a constant crisis. 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 and plan. He stresses the importance of sleep on reducing symptoms of chronic pain. He works with them to mimic doing manual therapy and movement therapy exercises on their own. He does a lot of experimenting and trial and error to figure out what works best for the individual. Different types of pain respond better to different types of techniques. He discussed how and why myofascial release works and ways to make it more effective and less painful. He discussed the importance of language around treatment. He talks about the misinformation about trigger points. He explained how skin stretching can be an effective home myofascial release technique. His movement techniques include mirroring movements from the tight side on the opposite side and vice versa. He discussed breathing and exhalation strategies. He discussed issues with posture and ergonomics and when those issues come into play. Cognitive behavioral therapy for sleep can be incredibly helpful for pain management. Links: Website Instagram Rolfing Neuromuscular Therapy Myofascial Release 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 lung issue. His symptoms initially came on really fast, but doctors couldn't figure out what was going on. He was eventually found to have 2 blood clots. He was immediately placed on blood thinners. He was diagnosed at that time with Lupus, but there was no mention of APS. Years later, he had 3 seizures. He was treated for epilepsy. Years later, a doctor had an inkling that he had APS, and within 5 months, he was diagnosed with APS. Challenges include fatigue, joint pain, cognitive decline, emotional changes, loss of his job, and trouble with finances. He detailed some negative experiences with his first neurologist. He often didn't feel heard by his doctors. Treatments included staying active, eating a high protein diet, listening to music. His condition has affected his cognitive abilities, he cannot balance a checkbook, he limits his driving, he gets dizzy frequently so he has to limit going out, has lost interpersonal skills, and not feeling useful to others. He discussed his experience with social isolation. Links: Deceived From Within: Living With APS and Lupus Website 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 likely to have APS than males. It tends to occur more in younger females. Women are more likely to have memory loss and migraines than males. This is a lifelong disorder, although as one ages, the antibodies might go away. Symptoms can include migraines, memory loss, stroke, POTS symptoms, seizures, blood clots in arteries or veins, and severe pregnancy complications. It is helpful to go to a doctor to investigate for APS if they have livido reticularis, refractory migraine, pregnancy issues, Raynaud's, memory loss in a young person, thickening of the heart valves, family history of autoimmune disease, personal history of autoimmune disease, nonspecific white matter changes in the brain ,low platelet count, recurrent stress fractures, and/or avascular necrosis. Beware because APS is an MS mimic. Usually, APS is kicked off by some sort of trigger. POTS and migraines often start around the same time. Plavix, aspirin, or blood thinners can help significantly with migraines. Potential pregnancy complications include miscarriage (often late), stillbirth, recurrent early miscarriage, preeclampsia, eclampsia, and/or intrauterine growth restriction. To minimize those effects during pregnancy, doctors often prescribe aspirin, Vitamin D, heparin, and plaquenil, and do close monitoring of the pregnancy and fetus. Other common nonpregnancy-related complications include stroke, blood clots, stress fractures, and heart attacks. Dr. Schofield discusses the many problems with the current diagnostic system of APS. A person is diagnosed by having clinical symptoms of APS and positive antibodies for APS. If you have APS symptoms and you start having new symptoms of a clot or neurological symptoms, get checked out ASAP to ensure that you are not having a clot or a stroke. She also recommends thromboprophylaxis after a surgery or after giving birth. Links: Center For Multisystems Disease Migraine Paper Dr. Graham Hughes 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 good medical care and how impossible it is to get adequate care for children with special needs. Jessica lays out how she obtained help for Benji's mental health crisis in Virginia. Spoiler alert, it was haaaaaaard! Links: Chronicles of Zazzles: Connective Tissue Issues The Bendy Twisty Zebra Bendy Wendy and The Almost Invisible Genetic Syndrome 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 athletic and danced, but kept getting injured and having knee dislocations. She decided to become an orthopedic surgeon when she was attending medical school. After her daughter was born, she started to have a lot of EDS complications, including POTS and MCAS, which led to a career transition. During medical school, she had tried to find a diagnosis, but was dismissed. After being diagnosed by Dr. Francomano, she was urged to start a practice working with individuals with EDS. Her goals are to help individuals with EDS and to educate patients and the public. To create a good EDS medical team, it comes down to education and awareness and training. Team members need to be aware EDS exists and the ways EDS patients may show up in their office. Presentations on EDS need to be made at conferences for all disciplines in medicine as well as medical students and trainees. She discussed how common individuals with EDS are misdiagnosed with ADHD or anxiety, when it could be POTS or CCI. Step one for this is to show that we have a problem of increased cost and getting inappropriate care. Next, we need buy-in from other medical professionals. Her approach to patient care is divided into 4 stages: organize, stabilize, mobilize, and dynamize. In organize, there are three stages. First is aligning the joints. Breathing mechanics are critical. Part two is neurologic, with sympathetic and parasympathetic tone. Patients need to be seen by someone who can treat POTS, sometimes with medical treatment and sometimes with lifestyle changes. They can work on the diaphragm with breathing. Part 3 is minimizing inflammation with MCAS and gut dysbiosis. Bracing can be included. Stage 3 with stabilize with isometrics, muscle activation techniques, neurologic retraining, movement initiation, maintaining a neutral spine, gait mechanics, and sit to stand mechanics. For dynamize (Step 4), you engage in physical therapy and other maintenance treatments. EDSRF is looking at the impact of underinvestment of EDS and that it would be advantageous to diagnose people sooner for everyone involved. They want to get research papers in targeted audiences hands. They are also looking at effective EDS treatment methods, as well as outcomes. Ehlers Danlos Syndrome Research Foundation PRISM Spine and Joint Facebook Twitter Instagram LinkedIn Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 mobility, and he felt like he was bitten, but he again wrote it off. One day years later, he was on his way for a tour at the White House and he had a stress reaction, which led to an MS exacerbating with right eye problems, left hand cramping, his legs not working, and he fell out of the car. He moved to Miami and was given a significant promotion. Then, he started having problems with his MS, such as his feet not having sensations, vision failures, eye floaters, right hand was curling,and losing gait. He stopped sleeping, worked 24/7, and triggered MS exacerbations. In 2004, he went back to his chiropractor, who urged him to to urgently see a neurologist. He went through all of the testing and was formally diagnosed with Multiple Sclerosis. He quit his job and drove home. After a time, he found a good treatment regimen, which tremendously helped his symptoms. A few years later, he was given an award for his work in the radio industry, which led him to start telling his story and writing books. He currently has a special entrance to get into his house, uses a wheelchair for mobility, uses New Step, hand controls in his car, does massage therapy, and uses chiropractic. Website Facebook Instagram Come Get Me Mother, I'm Through The Death of Fairness Optimal Health With Multiple Sclerosis Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 can last for days afterward, including swelling, painful urination, and discomfort when sitting down. She started to feel like less of a woman and felt like she was losing her identity. The doctors told her that her problem was psychological and brushed it off. She didn't feel like she could disclose to friends, which felt really isolating. For a long time, she persevered and had painful sex. She didn't feel comfortable fully disclosing to her sexual partners. Her gynecologist told her that the symptoms would pass on their own. She sought numerous other opinions, and saw a psychotherapist to try to minimize the symptoms and pain. Eventually, she gave up and ignored it. In her early 20s, she found a new gynecologist, who provided her with creams and treatments, set her up with a pelvic physical therapist, and biofeedback treatment for her symptoms. She tried it for a while, with minimal assistance from the treatment. She also did Pilates. However, she found that CBD and masturbation were the only things that helped with her symptoms. She noted that communication in the bedroom is key. Nowadays, she speaks up if she is in pain and redirects things to more comfortable sexual activities. She also takes things back to doing all sorts of sexual activities, not just intercourse. She has tried baths with magnesium salts, meditation, douching, boric acid supplements, and changed her diet, but none helped. She recommends having a safe confidant that you can talk to about anything. She currently copes with self-affirmations and journaling. Mello Daily CBD Personal Instagram Mello Instagram Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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, accessing education, friendships, friend groups changing, limitations in things they can do with their friends, fatiguing easily, not being able to keep up with friends, judgment of others when you don't look sick,and being seen in public with a wheelchair or feeding tube. For schools, issues include absences, if they are homeschooling vs able to attend school in person, accommodations, being comfortable using accommodations,and dealing with symptoms of chronic illness while in school. With family, struggles include parents removing their autonomy and independence, family members not understanding, sibling issues, family members not believing the young adult, family members not wanting to hear about the condition, family undermining treatment, and breaches in boundaries. She recommends finding a strong social support network, finding a group of friends with chronic illness, finding someone to help you navigate through difficult periods in life, and acknowledge and stick to your limits. Disclosure is up to you. To help advocate for yourself, can be responsible for self-care and your medication, educate yourself on your condition, journal, educate others around you about your condition, set boundaries about the information you are taking in, find allies, and set yourself up for success. Chronic Warrior Collective Chronic Warrior Coaching Youtube Facebook Instagram Pinterest eds society Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 of his foot also helped improve his mobility. His increased mobility after this surgery helped him feel like he was able to fit in with his peers better. He experienced discrimination by peers in middle school. He also experienced discrimination from the principal after performing poorly on one test. After that, he decided to set a goal for himself to make the varsity baseball team in high school. This goal helped give him more confidence, and the kids in his school started treating him more kindly. This goal was so successful that he set another goal of getting into college and he then raised his GPA high enough to go to a 4-year university and graduate from college. For a long time, he didn't want to disclose to people about his CP. It upset him greatly. Eventually, he realized the benefit of vulnerability and began to disclose about his condition. He copes by setting goals for himself and changing his mindset. For maintenance of his condition, he continues to exercise his body. Website: Facebook Group Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 injuries. Her last one was in 2013, and she experienced brain fog, fatigue, and head and neck pain. She went to a brain injury clinic, which was really helpful for her. In 2018, she moved and she was involved in physical rehabilitation, where a neuropsychologist told her that her problems were all anxiety and mood and was very dismissive. She tried lots of treatments for her condition, to no avail. After receiving poor treatment, she found a neuroophthalmologist who did a more thorough examination and suspected that Hannah had EDS. She saw Dr. Zingman, an EDS specialist, where she was diagnosed with EDS. She underwent testing for POTS, and the diagnosis was confirmed. She received a lot of new diagnoses in the past year. She recently started with a new physical therapist, which has been very helpful for her. She learned to advocate for herself not only with doctors but within her family. She makes sure to prioritize her health and her wellbeing. She gets creative with parenting, to make sure she cares for her children and takes care of herself. She adapts her parenting by doing a lot of sitting on laying on the ground, putting a stool next to the car to help them climb in the car by themselves, refraining from lifting her kids, minimizing physical activity, energy conservation, planning, fatigue management, and use of a babysitter. She copes by using medications, physical therapy, deep breathing, using a neck brace, distraction, talking to friends, and using Instagram. She is honest with people in asking for what she needs and letting her know her limits. Instagram Muldowney Method Untamed book Marriage Equity Calculator The Great Chore Audit Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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, drinking a lot of water, had reduced appetite, and experienced intermittent vomiting. Once a friend wasn't able to recognize her child, she called the pediatrician ASAP. The pediatrician ran a bunch of tests and sent them immediately to the hospital where he was found to be in diabetic ketoacidosis. Treatment has included insulin, initially being injections and later using the pump. He also has a service dog that will sense when his blood sugar is low. Her daughter started to experience pain starting at age 6. She took her daughter to a pediatric rheumatologist, where she was diagnosed with psoriatic juvenile rheumatoid arthritis. She was later diagnosed with Ankylosing Spondylitis. She has tried numerous medications for her conditions, but thus far, nothing has really worked. She is currently doing infusions once a month. Challenges have included learning how to help a child who has a potentially life-threatening condition, learning to recognize and treat patterns, helping her child have a normal childhood and learn to manage his diabetes, finding ways to make it safe for her son to go out with friends, maintaining a romantic relationship, and having limitations on travel. She has advocated for her children by teaching them their rights, helping him learn how to advocate for himself at school, and finding less expensive ways to get medications for her children. She copes by prayer, allows herself to feel her emotions, knowing that her children can still live a good life, using social support, and removing toxic people from her life. She recommends starting earlier with helping your children learn to advocate for themselves, helping them be informed about their healthcare, telling them to shop around for prices for supplies and insurance, and knowing your child's rights. Instagram Facebook Website T1D Mod Squad Facebook Group Kids Get Arthritis Too Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 experience. She was diagnosed with RA based on imaging. Six months later, she was experiencing extreme fatigue and was sent for bloodwork, which revealed Hashimoto's Hypothyroidism. She goes out of her way to find good doctors and advocates for herself by leaving doctors if they do not provide good care. Her current regimen consists of a thyroid supplements. She advocates for herself heavily with insurance companies. She coped using psychotherapy, social support, engaging in self-care, spending time with people who make her laugh, resting, eating, exercising, and spending time in nature. Flares are usually triggered by stress. Instagram Facebook Website Dr. Caroline Leaf 21 Day Brain Detox Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 low muscle tone. The first signs of something different was asymmetry in James' eyes. Things were fine at the first eye doctor appointment, but 6 months later, his vision prescription was drastically different. He needed glasses by age 1. Around age 2, he was found to have lens dislocation in his eyes. He then underwent an echocardiogram, which found an aortic aneurysm. It was recommended that he undergo genetic testing, which quickly found Marfan syndrome. When Allison got the diagnosis, she went through a year-long grief process, where she had difficulty coping. She still functioned, but emotionally, she was having difficulty. To cope now, she engages in a lot of self-care. She exercises, meditates, eats healthfully, and makes sure to stay in the present. She also moved closer to Buddhism, found a community, found her higher purpose,and strengthened her relationships. She has found that being in the moment has made her a better person and parent. She discusses her fears and concerns for her son and discusses her son's understanding of the condition. She discusses the lack of advancement of treatment for the condition. His condition is relatively stable currently. Treatments are limited for Marfan Syndrome but James has used losartan and a beta blocker. The family is choosing to move to be closer to family in order to advocate for James and to use their social support. She found a lot of social support and relies heavily on the Marfan Foundation. Going to conferences really helped her meet people. When raising a child with special needs, consider your child's needs, get to know your child, listen to your child, and make the best decisions you can. Allison discussed the sibling challenges of special needs. Strengths Finder Test Marfan Foundation Children's Program Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 polio and Guillan Barre. It took over a year to finally find a proper diagnosis, which was eventually detected through an X-ray. Medications helped him significantly through much of the rest of childhood. There were periods where he was in a wheelchair or had long hospital stays. As he has grown, his symptoms have changed a bit, including eczema and psoriasis. Currently for treatment, David uses medication, exercise, chiropractic, stretching, home exercises, and checks in with his rheumatologist. Exercise helps him cope with pain. He also uses meditation. His triggers include weather changes and sitting. Limitations include lifting and high impact aerobics. He discusses his concerns about the future. Arthritis foundation Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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, tendons, and muscles. If the ligaments are stretched out like in EDS, a person relies more heavily on their muscles to support them. The muscles work so hard, causing muscle pain. Physical therapists notice in patients with EDS chronic pain and pain doing day-to-day activities. Complications include craniocervical instability (CCI), atlantoaxial instability pain in neck, back, wrists, fingers, and other joints that are used more heavily and moved throughout the day. CCI is extra movement in the top joints in your neck. This can cause compression of the spinal cord, brain stem, vertebral artery, and vagus nerve, so people experience symptoms like headaches, neck and shoulder pain, feeling like your head is too heavy or will fall off, double or blurred vision, orthostatic intolerance, dizziness, vertigo, nausea, and fatigue. PTs should always screen for CCI and AAI if someone with EDS is coming in with neck pain. The sacroiliac joint is the meeting between the lumbar spine and pelvis. It is not supposed to move, but ligaments hold the joint together, so in individuals with EDS, they have laxity and the SI joint moves. Stabilization should be the first line or treatment and there should be no stretching, joint mobilizations or high velocity thrusting (especially of the neck). The back and neck pain are treated differently in individuals with EDS, due to the nature of the disorder. She recommends not cracking your neck. Even though it feels good initially, you are cracking an already hypermobile joint and making it even more hypermobile. Stretching is not always a good idea. The muscles are tight for a reason, they are working so hard, developing trigger points, but they are helping to mobilize you and support your joints. Trigger point release and manual therapy help more than stretching. These treatments should be gradually incorporated to see how the person responds. Dry needling could also be of benefit. Physical therapy in individuals with EDS should be sought as soon as possible. It is helpful to get the education, learn the tools to make pain better, and minimize pain. Know that you will likely be in PT on and off for the rest of your life, which is very helpful in minimizing pain and damage to your body. Goals for physical therapy should be tailored to the person. The focus should be on what is most important to them, to make those activities safer and less painful. Realistic goal setting is very important. The goal of having no pain is not a realistic one. Reducing pain is more realistic. Dry needling, manual work, trigger point release, heat, ice, and electric stimulation are helpful in addition to physical therapy exercises. Know that physical therapy is not a quick fix, as there is no such thing as a quick fix for EDS. Bracing is supposed to give you extra support and take up the slack of whatever isn't giving you support. It is not supposed to cause muscle atrophy or weakness. Each person is different in how long, how often, and when they need their brace. The pros of bracing include being able to more exercises without as much pain, neuromuscular reeducation, allowing you to engage in more movement and activities. There are braces for most joints. If you don't have a PT that can recommend braces to you, it can be helpful to see an orthoptist to get fitted properly. Bracing may be trial and error, which is to be expected. Braces may need to be used on a daily basis, which is ok. Make sure the braces fit properly, as it can do more harm than good if the braces don't fit well. Physical Therapy First Serola Belt Disjointed Book Living Life To The Fullest With Ehlers Danlos Youtube channel: Jeannie Di Bon Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 treatment was started more quickly. Her triggers include certain foods such as soy, heat,and stringy fibrous vegetables. She is diligent about calling ahead at restaurants to find out all the ingredients and to determine what she can safely eat. She has to be careful about which medications she takes, as some have long-term side effects. Treatments include prednisone, avoiding triggers, occasional fasting, rest, antibiotics, and psychotherapy. Challenges include doctors piecemealing treatment, keeping all the treatments straight, and preserving her energy. In relationships, make sure that the other person can cope with the symptoms of your condition and are willing to help emotionally support you. Amanda discusses tips and tricks to manage relationships and raising kids while living with chronic disease. Links: Twitter 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 and didn't quite understand what a chronic condition was at that age. She is currently living in Thailand. She copes by using a red light therapy device, ignoring pain, exercise, knee strengthening, staying busy, and resting. Her right knee dislocates every time she bends her leg. She later had a failed knee surgery. She was diagnosed with an enlarged aorta at age 17. Challenges include not having a health community, never knowing what is the cause of which symptoms, and doctors not listening to her or believing her. She created an EDS abroad Instagram page to gain community during COVID. To advocate for herself, she reminds others that she has this condition. Her biggest issues now are her knee, brain fog, pain, and chronic fatigue. Podcast Website Facebook Instagram Email Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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, kidney stones, anemia, delayed growth or sexual development in children, urgent need to move bowels, constipation, bowel obstruction, fissures, fistulas, and strictures. Diagnosis is made through blood tests, stool studies, colonoscopy, CT, MRI, capsule endoscopy, or balloon assisted enteroscopy. Treatments include medications, nutrition therapy, surgery, eliminating smoking, stress management, exercise, and alternative medicine. Links: Explanation Treatment Overview Nutrition Personal Stories Mental Health Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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, it causes inflammatory effects. In MCAS, mast cells are inappropriately activated. MCAS can be primary or secondary (to development of autoimmune disease, exposure to mold, Lyme disease, or COVID). Symptoms often can start in very young children. There are two different consensus criteria, which are not agreed upon. Consensus one has a narrow definition and consensus 2 has a less narrow criteria. Symptoms include feeling cold or hot water being poured on your leg when it isn't, nausea, diarrhea, chest pain and tightness, anaphylaxis, heavy menstruation, pain, heartburn, eczema, allergies, exercise induced asthma, neuropsychiatric symptoms, depression, anxiety, headaches, rage episodes, flushing, itching, rashes, hives, environmental allergies, ovarian cysts, cysts in the body, fibroids, lypomas, polyps, wound healing issues, abdominal pain, GI symptoms, diarrhea, constipation, neausea, vomiting, skin issues, POTS, difficulty getting a deep breath, insomnia, hypersomnia, and IBS. Triggers include extremes in temperature, changes in temperature, stress(physical or emotional), change in altitude or barometric pressure, chemicals in the environment, high histamines in food, physical pressure on the body, chemicals in food, mold, leftovers, chemicals in plastic, meats that use tryptase, elastace, and riper foods. People with MCAS tend to be very sensitive to numerous medications. Different triggers trigger different types of symptoms. Triggers seem to be additive to cause worse symptoms. Keep a food diary to see what your triggers are. MCAS causes multiple symptoms in multiple organs that don't seem to make a lot of sense. MCAS symptoms can vary in severity and symptoms across people and within an individual. MCAS reactions are not allergies. This is an important distinction. If you have a physician who doesn't understand MCAS, tailor what you say to the knowledge base of that physician and be careful how you phrase things, in an effort to gain their understanding. To get a diagnosis, seek out an allergist of a gastroenterologist. The tests for MCAS are very poor and there are lots of ways it could go wrong, leading to lack of diagnosis. They are better for diagnosis mastocytosis. They tests are very insensitive and rarely do they come back positive. Serum prostaglandin d2, plasma histamine, chromogranin a are the best tests to run to yield a positive result. A lot of these tests are only available in the US and the UK. MAST cell count on endoscopy slides are also helpful. Treatment includes Histamine 1 and 2 blockers, avoiding triggers, low histamine diet, chromalin, and antihistamines. Treatments for MCAS include recognizing a flare and treating it as soon as possible. Make sure you have a good POTS doctor and allergist. Dr. Schofield also discussed and explained small fiber neuropathy, including what it is, how to assess it, and the problems with the current diagnostic system. MCAS is one cause of small fiber neuropathy. Treatment of MCAS can also potentially help minimize POTS symptoms. POTS and MCAS have a huge overlap in symptoms, with a few exceptions. However, they may have different triggers. Treatment differs between the two conditions and if you figure out which is causing what symptoms, you can tailor the treatment for the flare of that specific condition. Response to treatment can help inform what is caused by POTS vs MCAS vs EDS. There seems to be a genetic link in MCAS, but this is not the case in everyone. To educate yourself, get on MCAS forums and read a book about MCAS. Center for Multisystem Disease Research Paper Global Consensus 2 Criteria Never Bet Against Occam MCAS United My Crazy Life Mast Attack Blog Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 nail and hair growth, stiffness in the affected joints, wasting away or excess bone growth,and impaired muscle strength and movement. CPRS is caused by injury to peripheral sensory nerves and can be caused by fractures, surgery, strains and sprains, burns, cuts, or limb immobilization. The condition is diagnosed after a detailed examination, but can also be diagnosed via nerve conduction study, MRI, and bone scans. Treatment includes physical therapy, psychotherapy, graded motor imagery, medication, spinal cord stimulation, neurostimulation, pain pumps, and alternative therapies. Links: Main Website More Information Managing Symptoms Clinical Guidelines Coping With Chronic Illness More Information RSD Foundation Fact Sheet Empowerment Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 she was diagnosed, she started two podcasts, Hypermobility Happy Hour and Bendy Bodies. There are 6 types of pain include visceral pain (body organ pain), nociceptive pain (actual tissue damage), neuropathic pain (damage within the nervous system or coming from the nervous system), and central sensitization (the nervous system is no longer able to properly modulate symptoms), allodynia(when a stimulus is painful that is not usually painful), and hyperalgesia (a lot of pain with something that is usually only slightly painful). Fibromyalgia is thought to be in large part due to central sensitization. Dr. Bluestein does not believe that people with EDS also have FMS, but rather that the body no longer knows how to properly modulate and interpret pain and other signals. Pain in individuals with EDS can be caused from microtrauma, joints going past the range of motion they are supposed to, inflammation in joints, muscles being super tight, muscle spasms, POTS, subluxations, tendonopathies, small fiber neuropathy, MCAS, dislocations, and nerve compression. There is a lot of overlap of causes of pain in people with EDS. Research has looked at temporal summation of pain, wind up phenomenon vs health control group, NMDA receptor antibodies, and looking at the quality of the pain to figure out what the type of pain is. Finding out the type of the pain should be the beginning, as we should figure out specifically what the cause of the pain is in the body. EDS bodies can all be different, so further investigation for each individual is warranted. It is also important to note that there is physical and psychological pain,and that impacts one another, as all pain is processed in the brain. Common pain myths include that chronic pain is just acute pain but just longer and that with chronic pain always comes damage/the degree to which they have pain is the degree to which they have damage. It is important to catch pain early so that it doesn't become chronic or centrally mediated pain. With fibromyalgia, we think it is due to altered pain processing at multiple levels (neurons, spinal cord, areas of the brain). Pain processing works both going up and going down. Areas that can amplify pain signals are enhanced in FMS. Her opinion is that people don't have both FMS and EDS, and that individuals with EDS have a lot of reasons from EDS to cause centrally mediated pain outside of FMS. To minimize pain above and beyond medication, surround yourself with solution-focused resources, balance information gathering with other activities, beware of confirmation bias, check and verify information, be selective in who you interact with, look at the source, and engage in activities you enjoy. Don't stop moving and exercising, look at small gains, look for little things to help you stay positive, practice gratitude, minimize catastrophization, and avoid the Boom or Bust cycle. To cope with pain, make sure to eat healthfully, reduce inflammation, and minimize intake of sugar. Email Hypermobility MD Bendy Bodies Hypermobility Happy Hour Facebook Twitter Pinterest Instagram LinkedIn Disjointed | Navigating the Diagnosis and Management of hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders Dr. Clauw's Talk About Chronic Pain EDS ECHO EDS Society EDS Awareness Managing Pain Before It Manages You Dennis Turk's Pain Survival Guide EDS Wellness HMSA EDS-UK Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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, stroke, surgical injury, or facial trauma. It is diagnosed by symptoms presentation, neurological examination, and/or MRI. Treatment includes medications, botox injections, microvascular decompression, glycerol injection, balloon compression, radiofrequency thermal lesioning, gamma knife surgery, rhizotomy, neurectomy, and complementary approaches. Links: Support Information More Support Facebook Group 1 Facebook Group 2 Facebook Group 3 Facebook Group 4 Facebook Group 5 Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 tricks to stay safe. We chat about the complexities of MCAS and trying to figure out our triggers. Jessica rants about how expensive chronic illness is and how much it affects ones finances. Monica discusses the combination of treatments that helps make her chronic pain slightly more manageable. To minimize sleeping dislocations, she keeps on leg on top of a pillow, and keeps herself still with a weighted blanket. She recommends an adjustable bed to assist with transfers to her wheelchair. Monica shared that it took 30 years to get formally diagnosed. She was always in pain and throwing up as a child. Doctors simply diagnosed her with mental health difficulties, and she was initially diagnosed with MS and lupus. She was able to get in with a private pay doctor who eventually properly diagnosed her. The two then discuss the horrors or racial discrimination in the healthcare industry and the power differential between patient and doctor. They discuss weight discrimination and the horrible limitations to getting insurance with preexisting conditions. To cope, Michelle uses her medications, uses virtual reality games and tours, a TENS unit, social support, distraction, bring kind to her, learning how to be a sick mom, and having “slug” days with her daughter. Invisible Not Broken Explicitly Sick Podcast I Can't Believe That Happened Podcast Unacceptable Pain Scale Muldowney Protocol Whillchair Smartcane Zerogravity Bed Oculus YouTube VR Art Rage App Procreate App Ninja Hot/cold Mixer Untamed Skillshare H-Wave Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 blood pressure and pulse changes when standing, fatigue, dizziness, headaches, heart palpitations, nausea, cognitive changes, shaking, fainting, coldness or pain in the extremities, shortness of breath, chest pain, GI and bladder problems, and poor sleep. POTS can be caused by another condition or can be of unknown origin. POTS is often diagnosed via TILT table test, but can also be diagnosed from the Quantitative Sudomotor Axon Reflex Test, Thermoregulatory Sweat Test, GI motility studies, or skin biopsies looking at the small fiber nerves. Treatment varies depending on the symptoms but often includes medication, lifestyle changes, increase in salt intake and water intake, compression stockings, and sitting. Links: POTS 1 POTS 2 POTS 3 POTS 4 POTS 5 POTS 6 POTS 7 Travel POTS 8 POTS 9 Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 foods. They determined her triggers through trial and error. Her daughter, Sadie, started showing signs of her condition at 18 months. She started showing trunk rashes, stopped being able to walk, not eating much due to jaw pain, wouldn't hold a spoon or pencil, and ate with her fingers. Dawn tried to find a diagnosis for her, but the doctors didn't think she needed to get testing for Sadie. Eventually, she couldn't move or get off the floor. She was told that she was just a worried first time mom, was told that she was putting her child through horrible tests for herself and not her child. She had to research things on the internet to find a proper doctor, and then Sadie was properly tested to find her actual diagnoses. Dawn recommends listening to your parenting instincts. To help Sadie, they tried a lot of different treatments, including medications, shots, IVIG, infusions, anti-inflammatory diets, chiropractic, and acupuncture. It took a lot of time and treatments for Sadie to be able to be more independent with activities, physically. Due to discrimination from others, Dawn and Sadie decided to do homeschooling, which has worked very well for Sadie. Dawn heard so many stories of teacher's discrimination against children with chronic illnesses. Sadie did a lot of co-ops to help with school. Although Dawn didn't want Sadie to have to use a wheelchair, Sadie greatly increased her independence and abilities when using a wheelchair, so she started using one. Dawn recommends making family a priority. Sadie prioritizes her energy and plans in down time or recovery time for afterward. Dawn has advocated for Sadie by standing up for her, getting involved in foundations, teaching Sadie to follow her internal voice, and giving up expectations others put on her. Sadie has found kind and empathetic friends who are really compassionate. Dawn taught Sadie how to stand up for herself. They use video chats to help Sadie be social when she doesn't feel well enough to get together in person. Sadie is finally in a place where her condition is very stable. Dawn uses social supports by talking with other medical moms and running a charity. To advocate for yourself, never give up, and don't search for advice from people who haven't been through it because they won't understand. Chronic Warriors Org Chronic Warrior Collective Body Check Journal LinkedIn Instagram Dawn Instagram Chronic Warriors Collective Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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, eye conditions, lung conditions, and other symptoms. It is diagnosed via blood tests, echocardiograms, EKG, eye examination, and imaging. Treatment includes medications to minimize symptoms, and occasionally, surgery. Links: Resources Find a Doctor Support Groups Healthcare Management Tool Patient Resources Questions Medical Symposium Series Empowerment Series Connective Tissues Blog Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 for her to get formally diagnosed. Even though her presentation was textbook for a connective tissue disorder, she wasn't taken seriously for a long time. Over time, her presentation of symptoms have changed somewhat, and her doctors are still in the process to see if she has an unknown type of EDS vs hEDS. She noted that diagnosis is crucial to management and care of chronic conditions. She stated that individuals with chronic conditions tend to collect diagnoses, without physicians putting the pieces together. Her diagnoses include EDS, POTS, MCAS, immune deficiencies, pectus excavatum, PCOS, endometriosis, several muscular and tendon tears, fibroids, Liver prolapse, Chiari malformation, stretched and hypermobile bladder, SVT, frequent pneumonia, IBS, reflux, bloating, and dysmotility. She found that her doctors never really listened to her and never tried to figure out what was going on. She even had a doctor tell her that “if you were a dog, we would put you down.” She was seen as a hypochondriac. She often had chest pain and difficulty breathing, but was never taken serious and they never addressed her pectus excavatum. They symptoms were often blamed on anxiety or panic attacks. She noted that with EDS, there is always so much going on that we don't always notice everything and we can't tell what is what. She discusses how important proper movement is in minimizes deconditioning and pain in individuals with EDS. Daily movement and exercise are key for Lara. She speaks to the need to be careful before undergoing surgeries when you have EDS. Challenges from EDS include hate mail and discrimination and blame from some individuals in the EDS community and people believing she has her own personal agenda in the EDS community. For treatment, she exercises, does physical therapy exercises, intermittent fasting, hot and cold compresses, high dose vitamin c, b12, and d, and uses hydration. To minimize subluxing during sleep, she uses targeted, focused, and closed-chain exercises. For her, friends, family, and a supportive partner are key to help with coping with chronic illness. Her goals for the future include traveling with work and meeting people, starting a family. She outlines fears and concerns for the future. To advocate for yourself, own your narrative. Arm yourself with research. If you feel like you are not being heard, you have the right to a second opinion with a doctor who will listen and validate your concerns. Links: Website Facebook YouTube Instagram LinkedIn NORD Global Genes Inspire EDS Society EDS Events EDS ECHO Virtual Support Group Breaking Down Barriers 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 feet, malnutrition, slowed growth, vision problems, and more. Complications include splenic sequestration, stroke, acute chest syndrome, pulmonary hypertension, organ damage, DVT and PE. Diagnosis is completed by blood test. The most effective treatments include bone marrow or stem cell transplant. Links: Resources Links Healthy Living Better Health Toolkit Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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. He feels that it is appropriate to go to the ER when the individual feels it is appropriate. Only you know your body, and it is better to be safe, than sorry. Err on the side of caution and go to the ER if you are unsure. By law in most places, they have to do at least a medical screening exam. If you are having chest pain, are older, or at high risk, it is even more important to go to the ER. As far as chronic illnesses, the most likely ones to come through the ER are diabetes, hypertension, and age-related diseases. In the ER, evaluation and treatment is much quicker than outpatient. They can do imaging, labs, evaluations for blood clots, and more. Conditions that are most appropriate to see in the ER are anaphylaxis, allergic reactions, and chest pain. Bring your old labs, your medical records, a one page data sheet about your medical conditions, complexities and recent test results, put ICE in your phone, and know your blood type and your POA. Keep in mind that ER docs are not expecting zebras and may not be as knowledgeable about zebra-like conditions. If the doctor does not listen to you, speak with them candidly about how you know your body and you don't feel you are being listened to, and could they please take a moment and listen. Let them know that there are diseases that not everyone knows about, and we are the zebras, so can they please investigate anyway? When we go to the ER, if you have a letter from your pain management doctor stating that you are under their care and being prescribed X dose of X medication, it can be hopeful in making sure your needs are met in the ER. Let the ER doctors know what your typical course of treatment is for the condition for which you are coming to the ER. Educate the doctor about your conditions. If you feel you are getting bad care, you can always ask to speak to a supervisor. If the docs in the ER don't have answers for you, write down your vitals and symptoms, make sure they set up a follow up for you. Advocate for yourself. Bring someone else with you to help you fight for your second opinion. Give the doctors a list of your current physicians. Express the desire to collaborate with the physicians. If the doctor refuses to provide you with what you express has worked for you in the past, ask them why. If they still don't listen, call your PCP and ask them to speak with the ER doctor. Try not to go to the hospital on July 1, as the new interns and residents start on that day. Don't go to the ER during change of shift, and instead go to the ER during low times or during the middle of the shifts. If they won't allow your family member in, see if you can find a hospital that will allow them in, or if there are none, bring them in via FaceTime or other platforms. Facebook Instagram Email Twitter LinkedIn Trusted Medical Success Reinvention Website 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 are multiple hypotheses as to the cause. Diagnosis can be made via pelvic examination, ultrasound, MRI, or laparoscopy. Treatment includes management of pain, hormone therapy, or surgery. Links: Treatments Coping Stages Resources Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 years. Shayla assumed that all children experienced chronic pain, and didn't know that it wasn't normal to experience symptoms like that until she was an adult. Until her formal diagnosis, she was told that her issues were primarily psychological, rather than physical. One physician had mentioned to Shayla when she was injured at age 13 that she might have EDS. However, a later doctor said that since she was black, she couldn't possibly have EDS or experience pain, and “black people will be just fine.” She felt so humiliated by those experiences. She felt traumatized and didn't go to the doctor for 6-8 months after that. It made her not even want to get a diagnosis. Once she felt comfortable again, she went to another physician, who formally diagnosed her with EDS. She felt so validated by that experience. It took her 3-4 years to finally be prescribed pain medication, because doctors though that “we know how your people are with opioids and pain medication” and would not prescribe anything for her, even though she had already followed all of the other recommendations given to her for pain management. Her challenges have included discrimination (in multiple settings including police, doctors, bosses, and professors), the invisibility of EDS, people telling her she looks fine, getting a ticket for legally using her Handicap placard, and always having to prove that she had an illness. She has advocated for herself by speaking up with professors, educating others about her condition, speaking on podcasts about her experience, and serving as a student advocate on the board of disabilities at her college She has had multiple joint stabilization surgeries. She has tried lots of other things to help with her symptoms including exercise, changing her diet, CBD, maintenance surgeries, braces, topicals, heated blanket, weighted blanket, pillows, tens unit, and a shower stool. Her health conditions impact dating, friendships, and working. She has had jobs that were unwilling to provide very reasonable accommodations to her. Shayla copes by talking about her experiences online support groups, using chat rooms, journaling, psychotherapy, mindfulness, meditation, and resting. She recommends that spoonies advocate for themselves by using your voice, telling your story, and educating others. Links: Facebook Instagram Facebook Group 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 is dependent on symptoms and the goal is to relieve pain and stiffness and prevent or delay complications and spinal deformity. Links: Educational Materials Webinars Support Groups Online Groups Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 benefits when the person is due disability. Private disability insurance through work is governed through ERISA law. In this case, even accommodations would not allow you to do your job. You cannot have a disability discrimination and disability case at the same time, as they contradict each other. Federal social security disability is the federal/national disability. You earn SSDI coverage by working a certain number of quarters in your life. If you work enough time, you are entitled to these benefits if you are unable to perform any gainful work for more than a year, earning about $1300 a month. If you can do anything to earn more money than that a month, you will not be awarded SSDI. This makes it very challenging for people who work high paying jobs. The max one can get from SSDI is about $3000 per month. You are entitled for Medicare after 2 years through SSDI. People also have short term or long term disability benefits through their employer or purchased on their own. If it is purchased through their employer, it is governed through ERISA law. ERISA strips an individual's ability to get additional damages from the insurance company outside of the money you are already owed. This means that disability insurers don't have any repercussions, and can more easily deny disability claims. They know a lot of individuals won't fight it, so it makes sense for them to deny claims. ERISA was originally designed to make sure pension managers can't steal employee's pensions. Things are starting to get better and there are better ways now to prove your case and your disability. To be able to be successful in your case, you have to find a lawyer who can properly get your case across. It is important to be able to have the medical evidence, as symptoms are not always easy to prove. Get objective evidence and point out what you have is already objective evidence. Know at the beginning if your doctor is supportive of your claim. Make sure all of your doctors are supportive. The longer you have been with your doctor, the better. Nowadays with COVID, insurance companies are taking the position that even if one is immunocompromised, one cannot claim disability if they are afraid of getting ill or dying at work due to COVID or something else, as they aren't sick yet and can work. The risk of death is apparently not a good enough reason not to work. Part of the problem with disability law is that the job is the one supplying the disability insurance and they don't care how bad the insurance is, they just care about the cost of the premiums. Andrew recommends getting copies of your medical records if you are considering disability. If your medical records are inaccurate, pick and choose your battles. If your claim has been denied, ask for a copy of your file. Make sure you have at least one doctor who is really helpful. Surveillance for someone with an invisible illness is not as big of a deal nowadays, because there is the expectation that there will be good days and bad days. Surveillance is only bad if they catch you doing something you said you couldn't do. Be aware of at-will states, because after FMLA is over, you don't really have job protections. If you have disability through your employer and already filed for a claim before being fired, you continue to have disability even if you are fired. Your claim has to be made the day you are fired or before, or you will not be covered for disability. Assume that everything you tell your employer will be seen by the insurance company. Disability companies pay you a percentage of your salary. You want to get disability payments post-tax, as you will end up with more money. Note, a lot of lawyers offer free consultations. Disclose to your employer whatever is in your best interest. Make sure whatever you tell your employer lines up with what you have told your doctors and the insurance companies. If you carve out a severance with your employer, make sure it doesn't stop your ability to get disability benefits. As far as accommodations, ask for what you need, even if your symptoms change on a daily basis. Read your policy, see what the definition of disability is, if that definition changes, look at limitations and exclusions section, your maximum benefit amount, and at the offsets. Links: Kantor Law LinkedIn Twitter Facebook Workwell Foundation Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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, difficulty walking, trouble with the bowel or bladder, vision changes, spasticity, cognitive and mood changes, speech problems, swallowing problems, and mood. There are varying courses of Multiple sclerosis. Multiple sclerosis is diagnosed via spinal tap, brain and spinal cord imaging, blood tests, and evoked potential tests. Treatment can include medications, therapies, and lifestyle changes. Links: Symptom Tracker Educational Resources Chapters Find Doctors Lifestyle Changes Emotional Wellbeing Spiritual Wellbeing Cognitive Health Work and Home Relationships Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 nicked his bowels. The leg compressions in the hospital after that procedure were put on so tight that his muscles atrophied. He was later diagnosed with RSD from the whole ordeal. When he was 16, his tic disorder became so severe that he needed to be sedated at the hospital and was given a year to live. He has severe neck damage from the tics, and he sustained dozens of concussions from the tics. He underwent Deep Brain Stimulation for the tics, which he noted significantly helped. However, the surgery made the RSD symptoms resume, leading to numerous hospitalizations. He later needed a pacemaker for his dysautonomia. Due to the severity of his conditions, he received his diagnoses relatively quickly. Chase only had a few misdiagnoses along the way, including fibromyalgia. Chase felt like doctors often felt that he was attention-seeking or drug-seeking, which was really upsetting. Chase usually has his parents assist him with advocating for himself and his care. Treatments include a pain pump and baclofen pump, DBS, and massage therapy. Chase copes using a sense of humor. Facebook groups have also been helpful for him. Links: Instagram Autism and College Podcast Episode 1 Autism and College Podcast Episode 2 Autism and College Podcast Episode 3 Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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, Raynaud's, and others. It is a genetic condition often diagnosed via blood and urine tests. Treatment can include various medications to address the different symptoms. Links: Symptoms Daily Life Living With Lupus 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 and lifestyle changes to minimize uncomfortable symptoms. Links: Your Future Survival Tips Stories Support Groups 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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, dislocations and subluxations, poor wound healing, problems with the GI system, heart, dysautonomia, headaches, mouth symptoms, sleep, and much much much more. Diagnosis is tough but is sometimes made via genetic testing or clinical symptoms. Treatment varies depending on the symptoms and the clinical manifestations. Links: EDS Helpline EDS Videos Community Resources Loose Connections Magazine Facebook Group EDS Virtual Support EDS Diagnostic Checklist 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 formal diagnoses at age 23. He received several misdiagnoses along the way. Lewis found that although some doctors listened to him, others didn't, some looked only for the easiest answers, and some prescribed harmful treatments. Challenges include brain fog, chronic pain, finding doctors who will listen, and trying to work. To advocate for himself, he is careful about his wording in appointments with doctors. His life is impacted by not being able to look up or down, and having to take life slower. To cope, he realizes that pain can be changing and fleeting, creates his own meaning in life, plays video games, learns new things, and reads. He shares his fears about the future and his goals for the future. He recommends advocating for yourself by being mindful about how you communicate with your doctor. Links: The Spoonie Struggle Symptom Tracking Journal Hardback The Spoonie Struggle Symptom Tracking Journal Paperback The Ehlers Danlos Society 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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, gastroparesis, possible MCAS, possible tethered cord, arthritis, possible chiari malformation, thoracic outlet syndrome, tachycardia, central vestibular dysfunction, possible craniocervical and atlantoaxial instability, occipital neuralgia, and many others. Although she was always sick as a kid, it got worse at age 18, then in 2007, 2010, and 2019. She has tried pretty much every treatment under the sun, but only a few have been helpful or effective. Challenges of having chronic illnesses for Jessica include time, money, waiting periods for doctors, not being listened to, dealing with chronic pain, having to continue to function when feeling bad, doctors making fun of her, misdiagnosis, and lots of mistreatment. She advocates for herself by bringing research with her, heavily researching her conditions, finding new doctors if doctors were mistreating her, using Facebook (wisely), asking trusted doctors for physician recommendations, writing down questions ahead of time, taking lots of notes, asking lots of questions, walking out of appointments if doctors were horrible to her, contacting national societies, bringing medical records with her, and getting second opinions. EDS impacts her life by affecting sleep, her activity level, her ability to go out and be social, food intake, parenting, relationships, taking up mental space, pain, expense, taking up a lot of time, not being able to bend over, having to be mindful of her every move, being scammed by doctors, missed time with kids, embarrassment over conditions, discrimination, being made fun of by doctors, and trying to find accurate and helpful treatments. She copes by talking to others, reading up about the conditions, listening to podcasts of varying sorts, starting a new podcast, trying to find the silver lining, exercising, self-care, talking to friends, laughter, and focusing on her kids. She recommends others do the following to advocate for themselves: research, ask others for suggestions about doctors, search for reputable doctors, come prepared to appointments, track symptoms, bring your medical records and research, don't take no for an answer, take notes, bring someone else to the session with you, ask a lot of questions, leave honest reviews of the doctors, find experts in the field, contact national societies, and document everything. She also discussed things people should and shouldn't say to someone with a chronic illness, as well as what she would like others to understand about chronic illness. Links: The Spoonie Struggle Symptom Tracking Journal Hardback The Spoonie Struggle Symptom Tracking Journal Paperback The Ehlers Danlos Society The Birth Hour The Patient's Playbook 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
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 subscribe to our podcast in the iTunes store, or wherever you find your podcasts, Leave us a 5-star review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 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 who are in the same boat as you. And, to realize that you are not alone. This is a nonjudgmental space to help each other through our chronic illness journey, to be an actual self again, and to make thriving in life an actual possibility. Links: 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 review, to help us know what you like and what you don't like, and to make sure other like-minded people find support through this podcast. Hosted by: Jessica Temple Music by Antarcticbreeze Music Disclaimer: Our show is not designed to provide listeners with specific or personal legal, medical, or professional services or advice. Listeners should always consult their health care provider for medical advice, medication, or treatment. Copyright 2021 Jessica Temple
© 2020-2025 Ivy Podcast Discovery LLC
