Episodes
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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.
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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
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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.
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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
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Missing episodes?
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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.
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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
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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.
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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
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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.
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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
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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.
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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
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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.
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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
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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.
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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
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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.
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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
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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.
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Deceived From Within: Living With APS and Lupus
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Hosted by: Jessica Temple
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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
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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.
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Center For Multisystems Disease
Migraine Paper
Dr. Graham Hughes
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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
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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!
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Chronicles of Zazzles: Connective Tissue Issues
The Bendy Twisty Zebra
Bendy Wendy and The Almost Invisible Genetic Syndrome
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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
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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
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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
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Episode 36: Kim "Kid" Curry's Story of Living With Multiple Sclerosis
In this episode, Kim "Kid" Curry discusses his experience with Multiple Sclerosis. Early on in his career, he started feeling stinging sensations in his legs, but he wrote it off as possibly being bitten by fire ants. Later, his eyes were an issue, he was having difficulty with 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.
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Come Get Me Mother, I'm Through
The Death of Fairness
Optimal Health With Multiple Sclerosis
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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
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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.
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Copyright 2021 Jessica Temple
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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.
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Chronic Warrior Coaching
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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
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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.
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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
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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.
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Copyright 2021 Jessica Temple
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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.
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Copyright 2021 Jessica Temple
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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.
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Dr. Caroline Leaf 21 Day Brain Detox
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Copyright 2021 Jessica Temple
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