Patient POV

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV!  Visit patientpov.ca for episodes, updates, resources, blog, and freebies!! Comment who you want to hear from on the podcast or what conditions or what professionals! Somedays is a period pain relief company that I have absolutely fell in love with!! For a 15% off discount code go to: https://somedays.com/JESS_AND_ELDA or use JESS_AND_ELDA at check out! Today we chatted with Letisha (insta: @endocrinecollective) who is a nurse and in school studying to be a dietitian. She shares her story of having PCOS and being a health coach for others with PCOS! Notes: Overview on PCOS including symptoms and diagnostic criteria Health risks of untreated PCOS like diabetes and heart disease if PCOS is not properly managed. Challenges with diagnosis including long delays, multiple doctors and lack of provider knowledge in diagnosing and treating PCOS appropriately. Patient advocacy and self-education the importance of patients doing their own research, advocating for needs and educating providers about PCOS best practices. Preparing for doctor appointments - identify needs and symptoms and have a plan of action. Example of coming prepared to an appointment with previous records and setting the tone by communicating needs and history of being dismissed.  Asking the right questions - Questions to ask doctors to avoid being dismissed and get all healthcare needs addressed. Finding the right healthcare team - Creating a team of different providers and professionals to address all aspects of PCOS care. Different types of doctors and non-doctor professionals that can help with PCOS care. Advocacy work for PCOS awareness and research - Details on advocacy work done through organizations to increase PCOS funding, awareness and treatment options. Getting Involved in PCOS Advocacy - Discussion of various organizations and ways people can get involved in advocacy for PCOS including legislative advocacy. PCOS Diagnosis and Weight Loss Journey - Discussion Latisha’s diagnosis experience and journey with weight loss, bodybuilding, and regaining health including impact of lifestyle factors. Managing PCOS Lifestyle with Busy Schedule - Challenges experienced balancing PCOS management, fitness, nutrition, and family responsibilities during undergraduate degree. Avoiding Restrictive and Fear-Based Approaches to Nutrition - Discussion of moving past restrictive diets and food fear to balanced lifestyle without eliminating food groups without evidence or individual need. She focus on helping clients improve PCOS without food fear and discussion of how to avoid becoming too restrictive. Acknowledgement that sometimes going through restrictive phases may be needed to progress to a more balanced approach. Challenges with Misinformation about PCOS Nutrition - Issues with widespread misinformation about what people with PCOS should and should not eat from unreliable sources online. Identity as a Dietitian and Areas of Focus - Discussing challenges with defining an identity as a dietitian and areas of focus like PCOS and balancing weight vs. stigma. Managing PCOS and Fear of Food - Discussing challenges patients face with PCOS and fear-mongering about food, and the need to empower patients. Parting Advice for PCOS Patients - Providing encouraging words that PCOS is manageable despite challenges and to take breaks as needed on the journey. Exercise Recommendations for POTS - Discussing exercise modalities like weight training and low intensity options being better than high intensity for POTS patients.

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV!  Visit patientpov.ca for episodes, updates, resources, blog, and freebies!! Somedays is a period pain relief company that I have absolutely fell in love with!! For a 15% off discount code go to: https://somedays.com/JESS_AND_ELDA or use JESS_AND_ELDA at check out! Today we chatted with Cheryl (insta: @arthritis_life_cheryl) who shares her story with  Rheumatoid Arthritis, PsA & AxSpa.  Cheryl’s Website: https://arthritis.theenthusiasticlife.com/  Cheryl’s podcast: Arthritis Life Notes from our conversation: Overview of chronic illness diagnoses and career path in occupational therapy. Mental Health and Chronic Illness - Discussion of stigma around mental health for those with chronic illnesses and techniques for acceptance. Acceptance and Commitment Therapy (ACT) framework for accepting uncertainty and living according to values despite health issues. Book recommendation: The Happiness Trap  Current Projects and Support - Details current arthritis support groups and self-management programs to help others thrive. Cheryl discusses going to therapy for short periods to treat acute conditions vs chronic conditions like arthritis that require ongoing management. Also touches on lack of access to OT/PT for arthritis patients. Cheryl explains initially not wanting to specialize in arthritis as an OT but getting frustrated by lack of education for arthritis patients. Decided to develop a self-management program. Service model and programs developed - Overview of the online self-paced course, support groups, and wellness consultations offered through Arthritis Life to help patients manage their condition. Gaps in care and 'donut hole' model - Explanation of the gaps in care between patients who are well-controlled and those needing intensive treatment, and how the program aims to help those in the 'middle'. Advice for newly diagnosed patients: Encouragement to balance a 'fixing' mindset with acceptance, focus on living with rather than fighting the condition, and breaking problems into small increments. Tips on managing anxiety in flares by focusing on getting through small increments of time rather than the future. 

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV!  Visit patientpov.ca for episodes, updates, resources, blog, and freebies!! Somedays is a period pain relief company that I have absolutely fell in love with!! For a 15% off discount code go to: https://somedays.com/JESS_AND_ELDA or use JESS_AND_ELDA at check out! Today we chatted with Shyla (insta: @chronicpaingirls ) who shares her story with severe scoliosis, chronic pain, epilepsy (seizures), and as a child sexual abuse survivor! Notes: Support Systems and Perspective Shift - Conversation about how Shyla's doctor's comments impacted her outlook and her husband's role in helping her accept her pain and limitations. Impact of Chronic Pain on Daily Life - Discussion of how Shyla's chronic pain affects her daily activities, work, appetite, and ability to do housework and errands. Mental health journey and connection to chronic pain - Discussion of how mental health has evolved over time and connection between past trauma, mental state, and chronic pain levels. Experience with scoliosis and chronic back pain - Sharing of experience with scoliosis diagnosis, wearing brace in high school, impact on activities and social life, and current pain levels. Advice to younger self about brace in high school - Advice not to worry about what others think and that it's nothing to be embarrassed about. Resource recommendations - Book and social media recommendations for learning about trauma, healing, and connecting with others with similar experiences. Recommendations for books: Body Keeps the Score, Mind Over Matter, and You Are the Placebo about trauma, healing from injury, and placebo effect.  Recommendation to use social media to connect with a large community of others with similar experiences rather than for comparison.

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV!  Visit patientpov.ca for episodes, updates, resources, blog, and freebies!! Somedays is a period pain relief company that I have absolutely fell in love with!! For a 15% off discount code go to: https://somedays.com/JESS_AND_ELDA or use JESS_AND_ELDA at check out! Today we chatted with Lilith (insta: @adamslilith.msart) who shares her story with multiple Sclerosis (MS).  Notes: Introduction to MS Diagnosis - Lilith describes the large flare up in summer 2022 that prompted her to see a doctor, with extreme fatigue, vision problems, and balance issues. Her primary care doctor did not take her seriously at first. Characteristics and Symptoms of MSLilly explains what MS is, who it affects most commonly, and her day-to-day and flare up symptoms. Most challenging symptom is cognitive fog, affecting her concentration and overstimulation. Lilly describes a typical day for her, with fatigue affecting her daily schedule and nightmares worsening her sleep.  Words of encouragement for those newly diagnosed or in a flare up, saying goals are still achievable through new approaches. She reflects on feeling her life was over when diagnosed but says MS did not stop her and new ways can be found.

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV!  Visit patientpov.ca for episodes, updates, resources, blog, and freebies!! Somedays is a period pain relief company that I have absolutely fell in love with!! For a 15% off discount code go to: https://somedays.com/JESS_AND_ELDA or use JESS_AND_ELDA at check out! Today we chatted with Maria (insta: patient.to.dietitian) who shares her story with  Ehlers-Danlos syndrome, Gastroparesis, PTTD, narcolepsy 1, bipolar 1, and more that we will dive into: Notes: Overview of Maria's diagnoses and how her conditions impact her life. How Maria manages her daily routine and symptoms of her conditions. Maria provides a sample daily schedule including rest periods, self-care, and cleaning in smaller tasks (15 minutes on, 15 minutes off, or clean up by taking everything out of the room and then bringing it back in if you want it in that room “moving back in”) Maria's experience in school and her passion for dietetics as a career path. Discusses coping strategies like medication and therapy as well as the importance of a strong support system. Having a close friend who understands conditions helps with coping and advocacy. Shares experiences with doctors who dismissed conditions and symptoms, including a neurologist and ER doctors. Recommends getting second opinions, bringing an advocate like a case manager to appointments, and not giving up advocacy. She shares that it's okay to experience burnout, seasons will change, and new treatments may emerge, so it's important to not give up hope.

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV!  Visit patientpov.ca for episodes, updates, resources, blog, and freebies!! Somedays is a period pain relief company that I have absolutely fell in love with!! For a 15% off discount code go to: https://somedays.com/JESS_AND_ELDA or use JESS_AND_ELDA at check out! Today we chatted with Lindsay (insta: spoonfuloflindsay) who shares her story with small fiber neuropathy, POTS, migraine, ME/CFS, and more! Notes: Small Fiber Neuropathy: Lindsay describes what small fiber neuropathy is and how it affects her daily life as a teacher through numbness, tingling and pain. Daily Challenges: The most challenging impacts on Lindsay's daily life from her conditions like brain fog and fatigue. Coping Strategies: Ways that Lindsay advocates for herself and finds accommodations like reduced hours and mobility assistance. Managing Chronic Illness: Discussing strategies for navigating the healthcare system and advocating for oneself when seeking diagnosis. Give yourself permission to rest Self-Care Strategies: Deep breathing exercises and meditation apps used to manage fatigue and support restorative sleep and recommends the Yoga Nidra meditation app. Don’t be afraid of firing unsupportive doctors and finding one with a good bedside manner (you can look at their online profile and reviews). Asking doctors that are dismissive to document the refusal of the request you made (ex: tests or referrals) in medical notes. This will be proof if you get results back in the future and sometimes they change their mind once documented

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV!  Visit patientpov.ca for episodes, updates, resources, blog, and freebies!! Somedays is a period pain relief company that I have absolutely fell in love with!! For a 15% off discount code go to: https://somedays.com/JESS_AND_ELDA or use JESS_AND_ELDA at check out! Today we chatted with Ali (insta: alison.rheaume) who shares her story with Concussion, Hypoglycemia, EDS, Dysautonomia, Narcolepsy, Endometriosis, Auditory Processing Disorder, Asthma, Allergies/MCAS... and living life with all of them!  Notes: Ali's Medical Journey and Conditions - Discussion of Ali's medical conditions including concussion, dysautonomia, endometriosis, and advocacy work. Daily Life with Chronic Illnesses - Discussion of Ali's daily routine, challenges, and coping strategies for managing multiple chronic conditions. General Information: Ali outlines a typical day including morning and evening routines and alternating cognitive and physical tasks with restorative breaks. Diagnosis Journey and Advocacy Work - Discussion of Ali's difficult diagnosis process and decision to advocate for the chronic illness community. Tips and Advice - Ali shares tips for a natural approach, support groups, and words of encouragement. Mindset and self-care - Discussions around embracing growth mindset, private productivity, and not needing validation from others. You are loved for who you are and do not need to prove yourself to others. Introduces the concept of 'private productivity' - productive tasks done daily that no one sees but benefits well-being.

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV!  Visit patientpov.ca for episodes, updates, resources, blog, and freebies!! Somedays is a period pain relief company that I have absolutely fell in love with!! For a 15% off discount code go to: https://somedays.com/JESS_AND_ELDA or use JESS_AND_ELDA at check out! Today we chatted with Dorian (insta: summit__health) who is a functional medicine practitioner trained as a nutritionist and has autoimmune conditions himself!! He has a facebook group which he provides longer videos (see his instagram for more information) as well as works 1:1 with clients from around the world (DM him if you want to work with him)!! Notes: What he does! Solutions covered as a nutritionist including various facets covered like nutrition, sleep, stress management and exercise. Nutrition tweaks and common issues  Benefits of exercise for chronic illness - Explains how exercise can help adapt the body positively by increasing strength and improving immune system balance. Physiological mechanisms of chronic illness - Describes how chronic stress leads to cortisol resistance and immune system deregulation as an emergency response. Exercise for Chronic Illnesses - Discussion on the benefits of strength training over cardio for chronic conditions. Gut Microbiome and Chronic Inflammation - Explanation of how gut microbiome and poor function can lead to immune stimulation and chronic conditions. Improving Gut Function and Microbiome - Discussion on interventions like improving nervous system function, supplementation, and lifestyle habits to support the gut.

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV! Visit patientpov.ca for episodes, updates, resources, blog, and freebies!! Somedays is a period pain relief company that I have absolutely fell in love with!! For a 15% off discount code go to: https://somedays.com/JESS_AND_ELDA or use JESS_AND_ELDA at check out! Today we hear from Stephanie (insta: spoonfulsofchronic) who shares her story with Ankylosing spondylitis, endometriosis, adenomyosis, fibromyalgia, hidradenitis Supprativa. She works as a specialist oncology and haematology physiotherapist which provide a great foundation for our conversation to pair her personal and professional experience.  Notes: Things that help with the pain and fatigue is heat, sitting down, animal support, support from people to help you drive when you have more pain  Period pain that affects your daily life is not normal!! Advocate for yourself and don’t give up! You know your body better than anyone else, so keep pushing! Allowing at least one person in because a support system is important!  Be kind to yourself! Whatever you need to do to get through a flare, do it (ex: cancel your plans to go out - and your true friends should understand and respect that)

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV! Visit patientpov.ca for episodes, updates, resources, blog, and freebies!! Today we chatted with Amanda (insta: charlie.the.service.doodle) who is a fellow dog mom and chronic illness warrior. She shares her journey with, Notes: For college students: Print out hand out or powerpoints from professors  Physical therapy to work on stabilization for Ehlers Danlos Syndrome (EDS) Coping strategies for pain: ice pack, heating pads, and lidocaine patches Service dog provides an increased independence Body braid for EDS (brace for body) You are not alone! Dysautonomia International: https://www.dysautonomiainternational.org/ Vitassium (products like their salt capsules) https://www.amazon.ca/SaltStick-Vitassium-Buffered-Electrolyte-Supplement/dp/B076MXR1LV

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV! Visit patientpov.ca for episodes, updates, resources, blog, and freebies!! Today we chatted with Stephanie (insta: Chronically_stephanie_) who is a mom and chronic illness warrior. She shares her journey with post Wegener’s Granulomatosis, psoriatic arthritis, Ankylosing spondylitis, chronic migraines, Notes: You can “fire” your doctor if they are not taking your concerns seriously I don’t want a diagnosis and we don’t want to be sick but we do want to be able to have the correct treatment, which can only happen with the right diagnosis Even when you have a diagnosis, it may take a to find a treatment that works and it may work well for you now but that could change Have things that you need close to you whether you set up a mini kitchenette or you have a bag that has your essentials you keep with you all the time, it is important to have what you need around you Bearable - medication and symptom tracker app Hang in there  Keep going, don’t give up

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV!  Today we chatted with Erika (insta: erikajoysneath) who is an author and teacher. She shares her journey with post injury chronic pain, high functioning anxiety, fibromyalgia, and endometriosis. Notes: Her website: https://erikajoysneath.com/  Have to support mental health to support physical health and vice versa  She wrote a book about Adalene Plays Many Ways, a children’s book about how chronic pain and how a day looks differently for two people https://www.amazon.ca/Adalene-Plays-Many-Ways-experiencing/dp/B0BTKXY349  Accept the present and look forward rather than questioning why something happened to you (This took her years to do, this isn’t an overnight mindset switch) Ask for help Don’t let your anger or resentment towards your body control how far you are pushing your body Care for your mental health Don’t sacrifice your health for your job Accept what you did in the past as doing the best you did with the information you had at the time Continue to be brave and ask for help! Find 2-3 people who will be in your corner  Give yourself TONs of grace (extra scope of grace) 

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV!  Today we chatted with Olivia (insta: oliviardennis) who has a Christian based chronic illness page (insta: Yourpainhasapurpose). She shares their journey with POTS, CMT, GP, hEDS, chronic migraine, fibromyalgia, IBS, GERD, and mental health conditions. She also makes care packages for chronically ill teens called spoonie boxes! Notes: Slow down and give yourself compassion Salt/electrolyte recommendations: Vitassium salt pills, Liquid IV, LMNT, pedialyte  Ice pack https://www.releafpack.com Coping skills Therapy Deep breathing Grounding Affirmations  Mindfulness Journaling Self care activities Spending time with pets Watching a show or movie Lighting a candle Reading a book Listening to music Support groups Even if (insta: @weareeven) bible study support group for women with disabilities https://linktr.ee/weareevenif Promise: support group for people with CMT https://www.cmtausa.org/get-involved/cmta-compass/ Take it one day at a time, he present and mindful Don’t give up - there is support and love out there for you Continue giving yourself grace and compassion Don’t over do yourself Trust your gut BUT if you have stomach issues, maybe don’t 

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV!  Today we chatted with Shedrica (@lupusspeaks), a fellow podcaster, and chronic illness advocate. She has lupus and strives to showcase how to live a good life despite her diagnosis.  Notes: Get involved in social media/chronic health community because people can provide resources and tips they use which you can consider implementing too Planning, writing everything down and keep an agenda gives you a piece of control back and helps you not forget things because it is written down Worry well once worry well: Plan in advance for a flare / who can you lean on to take care of the kids or your pets, have food prepped and in the freezer so meals are easy, etc.  Be informed and educate yourself on your chronic illness Find a source of strength in your faith and in your self-love. How you treat yourself if how people around you will treat you - when you’re hard on yourself, people will be hard on you too Give yourself a break, love yourself, and be kind to yourself

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV!  Interview portion starts at 4 minutes and 3 second Today we chatted with Nick, a physical therapist and we talk about exercise rehab and all things physio and chronic illness.   Main topics or questions we get answered in our conversation: Educational background of someone who is a physiotherapist  What is physio or physical therapy? The notion of “movement is medicine”  How to implement exercise even when you can’t do a big “workout”  How does movement help with exercise intolerance?  Can people with chronic illnesses benefit from physio? Physical rehab is more than just the physical aspect, it is the mental, confident building too!

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV!  Interview portion starts at 4 minutes and 3 second Today we chatted with Kiara (@thechronicallyillnetfitter) and she shares her story with HEDS, POTS, ME, fibromyalgia, endometriosis, chronic migraine, MCAS, IBS, chronic pain and Eustachian tube dysfunction (ear). She gives us the perspective of having a chronic illness while in elementary and high school.  Notes: You have to find a balance of not pushing yourself too hard while still doing the things you enjoy.  The Australian healthcare system has a dual model, private and public health model which allows for emergencies to be covered by the government but some treatments need to be paid for or if you have private health insurance, it would subsidize a portion of that treatment. How COVID affected schooling while having a chronic illness When you are first getting diagnosed, it is helpful to find people who have the same condition as you and you can see if they are doing well, there is hope for living a fulfilled life despite your chronic illness! Get involved in the chronic health community because it helps you feel less alone!

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV!  Today we chatted with Rosa (@thatworkingk9), a fellow dog mom, student, and chronic illness advocate. Who shares her story of living with postural orthostatic tachycardia syndrome (POTS), post-exertional malaise (PEM), and chronic fatigue syndrome (CFS), and atopic dermatitis.  Notes: Salt/hydration recommendations: Liquid IV, LMNT, and Propel electrolyte water beverage Headache and light sensitivity recommendations: Sunglasses and dim computer light (night mode to take the blue light away) Stay hydrated: get a cute cup with a straw so it will make you want to drink it POTS: always have a blanket or jacket to layer up or have the ability to take off layers

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV!  Today we chatted with Selena (@myloopylife), a fellow dog mom, and chronic illness advocate. She is a lupus warrior, advocate, and a coach who is helping empower women to reclaim their lives from lupus and go from surviving to thriving on their journey. Notes: The Art of being well with Dr. Will Cole Balancing your health needs and fulfilling your passions  What helped her stay flare free for a long period was a combo of western medicine as well as a holistic approach with diet, exercise, and mindfulness and learning to be in tune with her body  Diving into the online community  Tools provided by nonprofit organizations such as Lupus Foundation of America https://www.lupus.org/  CBD Ginger turmeric drops Red light therapy to decrease inflammation, pain, and improve circulation  Her goal: foster an environment where living with lupus means thriving and not just surviving  Your diagnosis does not define you

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV!  Today we chatted with Em (insta: chronically_creative_em) who shares their journey with fibromyalgia, migraines, asthma, IBS, depression and anxiety, and more!  Notes: Goal to speaking to a friend once a week Find a balance of doing the things you love but not pushing yourself too  To do list app: habitica Book/reading app: Blinkist Face massager app: forYou Storage on wheels for all your supplies and take throughout your house Walking sticks / canes:  Cheaper: Flexyfoot with cork handle  More expensive: Neo-Walk (has fun designs) Starting out of your diagnosis journey, you have 2 obstacles:  A diagnosis: overcome your people's pleaser side and advocate for yourself and/or bring someone with you and follow people on social media who you can relate to and feel less alone but stay away from accounts that make you feel shameful. Mental side of it: reclaim the chronic illness identity and be proud of it go from feeling shameful to feeling prideful in who you are and how you identify which may be disabled.

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV!  Today we chatted with Sophie (@sophielucy.seger), a fellow dog mom, and chronic illness advocate. She has endometriosis and joint hypermobility syndrome and is currently working as a doula. We had a great conversation about endometriosis, medical gaslighting, and why it is so difficult to get diagnosed with endometriosis including health inequities in receiving care, as well as in research.  Notes: Get a second (or third) opinion, there are some good doctors out there Take someone to the appointment with you for help Support system and pets (like dogs!) makes a world of difference  It is hard when you can’t trust your own body but start trusting yourself! Good websites https://endometriosissouthcoast.com/author/jodiehughes/ https://endobuddies.com/ https://www.menstrualhealthproject.org.uk/ Heat and tens machines help along side medications Reach out for support and if you don’t have people in your area, connect to people online - a lot of comfort can be found in sharing and relating with people who understand and are going through it as well  You are not alone!

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV!  Today we chatted with Jennifer (insta: gracefully_jen) who is also the host of the podcast called My Spoonie Sisters (insta: my_spoonie_sisters)! She shares her journey with rheumatoid arthritis, pustular psoriasis, and alopecia areata Notes: For friends: Educate yourself, listen, be flexible, check in regularly, include them, be empathetic, respect their needs, and celebrate their strengths. Be a spoon collector, not a fork giver  Move doctors if you don’t feel one is listening to your concerns Advocate for yourself if you feel a medication is not reacting well with your body Don’t get stuck in your hurt because your life is worth living, it's just going to look different  You matter, you are enough, you are valuable You need to find your own way for living your best life despite what you are going through Don’t be afraid to find people and reach out about things they’ve tried or done or helped them to get more ideas Don’t get stuck morning the life you once had because life is still beautiful .

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV!  Today we chatted with Mariah (@endodoula) who shares her story with endometriosis, adenomyosis, pelvic floor dysfunction and mental health struggles. We dive into the complexities and misunderstanding of endometriosis. Recommendations: Website: https://www.bestworstclub.com/  go to Clubhouse tab for a private group space. Coping strategies:  Home is my safe place  Heating pad Epsom salts and hot bath Daily cannabis for pain Sleeping, eating, drink water Stretch daily When out of the house bring: portable heating pad, lidocaine patches, vape pen, water. Planning and preparing for the anxiety from chronic pain If you ask your doctor to try something (ex: test or treatment) and they say no, ask them to note your request in the chart (it may also change their decision).  Ask for a copy for your doctor’s notes (sometimes things are written that were not discussed or they may have opinions written like combative patient or undiagnosed mental health conditions (when you are just clarifying as asking questions)) Know you are not alone.  Someone else is going through similar situations.   Your worth is not wrapped up in your illness

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV!  Today we chatted with Kaitlyn (@trust.my.gut) who has a service dog account (@service.dog.sebastian). She shares her story with Crohn’s, PCOS, HS, Psoriasis, POTS, CVS, and more! Recommendations: Get involved in the community  Don’t over do it on your good days! CHOP Protocol (to get back into working out): ⁠https://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf⁠ Colouring sheets Visualization Vitassium - ⁠https://thepodiumshop.ca/products/saltstick-vitassium-100-ct⁠  Bouy - ⁠https://justaddbuoy.com/⁠ Migraine cap - ⁠https://amzn.to/48X4LBV⁠ and ice roller - ⁠https://amzn.to/3w54w9i⁠  Heat eye mask - ⁠https://amzn.to/48YptBm⁠  Compression socks/legs - ⁠https://amzn.to/3SH3Ors⁠  DISCLAIMER: Things said in this podcast are of the opinions and experiences of guests and should not be taken as medical advice but rather suggestions to talk to your medical care team about. If you have any questions, please let me know!

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV! Today we chatted with Mariah (insta: the.invisible.voices) who tells us her story with IBD and PCOS. Notes and recommendations: Link: https://www.theinvisiblevoices.com/ Support and community Dive into nutrition and fitness Reduce or eliminate things that are not healthy for you Find a doctor that supports and listens to you Cold therapy for inflammation Slow improve your gut microbiome Extremely painful cramps are not normal! Bring someone to appointments if you can to validate your symptoms

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV! Today we chatted with Ally (@livinglongcovid) who tells us her story with POTS and ME/CFS. Notes and recommendations: Use of wheelchair when needed Not feeling the need to say “sorry” for accommodations Not finding self-worth in the material things (ex: occupation) Gratitude journal  Balancing hope with acceptance Everything chair to use while cooking, washing dishes, or hair/makeup Electrolytes  LMNT - tastes good!! Liquid IV Vitassium - capsules and chewables for on the go!! Protein drinks Premier protein Core power protein drink Find/meet one other person who is going through what you are going through, you are not alone!

Hello Hello! I'm Jess (insta: jess_and_elda) and this is Patient POV! Today we chatted with Alyssa (@chronicallyfulfilledlife) who shares her story with Endometriosis and Fibromyalgia. She shares her tips and tricks on energy saving and chats about how she  helps chronic illness warriors learn how to manage & save their spoons (energy), advocate for themselves, learn how to make mindset shifts and really learn to thrive while living with chronic illness through her coaching sessions. Her recommendations: Visit her website, Chronically Fulfilled Life:  https://chronicallyfulfilledlife.com/ Treat your health life the full time job that it is, be prepared for appointments, and have a list of questions/”meeting” notes, etc. Endo Events: https://www.endometriosisevents.com The Happy Pelvis: https://thehappypelvis.ca/

Hello Hello! I'm Jess (insta: jess_and_elda) and this is Patient POV! Today we chatted with Susan (@the.chronic.wanderer) who shares her story with Crohn's, IBS, IC, hEDS, migraines, and pelvic pain. Recommendations Line for procedure anxiety: “Can you please tell me what you are going to do before you touch me” Have an ongoing note on your phone about questions, thoughts, and concerns so you know what you want to discuss before going in Support system is helpful if you have it  Ice packs or heat pads Meditation - short guided one is helpful before bed  Journal - to process thoughts Her dog is good for her mental health Sunshine and fresh air is helpful  Therapy  Stretching Do enough research to inform yourself BUT don’t fall down the google hole It is overwhelming and scary but those feelings are relatable for those with chronic illnesses. Feeling anxious, depressed, or angry is okay and normal and you need to work through them to feel a nice life despite the illnesses, it might just look different than what you expected your life was going to look like.

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV!  Today we chatted with Shannon (@chronicpainhacker) who shares her story with Fibromyalgia, Guillain-Barre Syndrome, FND, Mental Health, and Dysautonomia.  Things that have helped her: Divide your day in half with a nap in the middle to help with fatigue Guided meditation and breathwork.  Light therapy when you first wake up in the morning Get involved in your own healthcare and speak up when a treatment option makes you uncomfortable Join chronic pain support groups  Group therapy with your partner  Activities: Gardening, Word searches, adult colouring books, going to the library, reading, journalling, bibles study Social connections are important! Radical acceptance - “Pain + not acceptance = suffering” “Pain + acceptance = thriving” Carve out joy and make things interesting in your life Give yourself grace Set yourself up for success (doing tasks slightly different to work with your body, rather than against it) Recommendations: Shannon’s book: Chronic Pain Hacker: Because Healing is Hard https://amzn.to/48oIdt5 Book: The Body Keeps Score https://amzn.to/3NvUpA7 Vagus Nerve exercise book (many different options):  https://amzn.to/3GMIBFT  Book: The Missing Link https://amzn.to/3tlcslC

Say, “Hello” to Amy (@in16yearsofendo). She is sharing her experience with endometriosis and having gone 16 years undiagnosed! She has a podcast called In Sixteen Years of Endometriosis, and she is the author of Finding Peace with a Devastating Disease    Recommendations: Find her links: https://linktr.ee/in16yearsofendo Finding Peace with a Devastating Disease: https://amzn.to/414mi7M Podcast recommendation: Endo Thick Of It with Brandon and Kimether https://open.spotify.com/show/1JTUbvgrLCkinzOWDOoYZe?si=982455e816d747b7  Finding compassion with yourself is a struggle! Learn to let go of the resentment towards your body, and embrace your body instead! Learn to process your grief instead of getting stuck in it What is happiness and what does it mean to you? Cater to what your body needs with a sense of gentleness and self compassion Without the tools, the trauma rules!  Tapping for anxiety  Stretching  Going for a walk Journaling Lean on the chronic health community/endometriosis online community 

Say, “Hello” to Kyra (@have.endo.will.travel). She is sharing her experience with stage 4 endometriosis, chronic fatigue, mental health, and more!  Recommendations: Advice: Keep a copy of everything (even if you can’t understand it) and keep as much information on yourself as you can (ex: track period or pain).  Phrasing to doctor: Is this something you can help me with or is it something I need to be referred for? Journaling (aesthetically pleasing journals - links below) Notebook: https://amzn.to/3MQeyAs  Pens: https://amzn.to/46gG01e or https://amzn.to/3uvhKer  Highlighters: https://amzn.to/47Dp7yJ  Stencil bookmark: https://amzn.to/3urHF76  Shower when feeling dysregulated - shower chair: https://amzn.to/3R6Ogwo  Stretches (even just in your bed). Fresh air (even just on your porch). Friend and family support. Join the community of those with chronic health conditions online (social media). Endo resource: Nancy’s Nook: https://nancysnookendo.com/ Book: How to Keep House While Drowning: https://amzn.to/3upagKd

Say, “Hello” to Chelsea (@gettingthebetterofendo) who is sharing her story of endometriosis and mental health!!

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV!  Today we chatted with Kisha, a public health nurse with POTS. She created her instagram page as a way of explaining what life is like with a chronic illness for her family and now it extends to those who have chronic health conditions or their loved ones! Notes from our talk: Everyday is different and everyday is hard, but we need to find time to rest our bodies Coping strategies she has found to help her: Being in peace and quiet Reading the bible Calm app - brown noise or green noise Journaling - feelings from the day or anything that comes to mind You are your own biggest advocate! Don’t stop if you don’t feel the answers are the solutions to your problems! There is an answer out there for you, just keep pushing The diagnosis is just validation for how you’ve already been feeling What you are going through is real - don’t let the doctors make you think you are making it up or that it's all in your head because it's not!! Resource links: Liquid IV Pink himalayan salt Dysautonomia International: http://www.dysautonomiainternational.org/  Dr. Diana Driscoll https://potscare.com/  Calm app students get a discount too: https://www.calm.com/?pid=googleadwords_int&af_channel=googlesem&af_c_id=15251743825&af_adset_id=131213006073&af_ad_id=561263049540&af_siteid=g&af_sub_siteid=&af_keyword=kwd-100623440&af_sub3=c&af_sub4=Cj0KCQjwhfipBhCqARIsAH9msbni6R3GsscXIQN3M8wfGpOfRoT9q2coKSlCSX0NQjHjSeM6K6OzohsaAvi0EALw_wcB&utm_medium=paid&utm_source=googlesem&utm_campaign=15251743825&utm_content=homepage&utm_term=kwd-100623440&gad=1&gclid=Cj0KCQjwhfipBhCqARIsAH9msbni6R3GsscXIQN3M8wfGpOfRoT9q2coKSlCSX0NQjHjSeM6K6OzohsaAvi0EALw_wcB 

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV!  Today we chatted with Lexi, a fellow spoonie and disability advocate, who shares her journey with Neuromyelitis Optica (NMO), long covid, dysautonomia, and anxiety. Things that have helped her: Support system - in person (Mom and fiancée), social media (connecting with people who can relate) ​​ You need to advocate for yourself or have people around you who can advocate for you (even if you are experiencing medical gaslighting) Find hobbies that you enjoy, explore your creativity, find something that feeds your mind and soul that interests you Leaning on the online community has helped her feel less alone on her health journey  Look at everything for the beautiful thing that it is, let's focus on the good and keep moving forward Productivity is not measured to your worth Resource links:Pedialyte: https://amzn.to/46UJ1F2

Say, “Hello” to Caitlin (@chronicles.ofcait) who has hypermobile ehlers danlos, functional neurological disorder, and hip dysplasia. She is learning how to adapt to her new “normal” After diagnosis. Caitlin talks about the UK healthcare system and services available, her support system, and coping mechanisms in her daily life such as: 1. Write and release it through journaling. 2. Therapy for chronic pain and finding purpose/goals. 3. Mobility aids such as a walking stick, and wheelchair. 4. Ice packs such as a migraine pack (https://amzn.to/3PPpA9W) 5. Knee, ankle straps and pillows for keeping joints aligned while sleeping. 6. FND app to log health symptoms.

Say, “Hello” to Bev @unwellunlimitedly. She is diagnosed with endometriosis, adenomyosis, IIH, and a form of myopathy. After long wait times and frequently being dismissed Bev has become more confident in what she is feeling, feels more empowered to advocate for herself, and to champion improvements for the healthcare system, specifically for people with physical and mental health illnesses. Coping mechanisms that have come in handy for Bev have been: -Therapy -Journaling -Meditation: deep breathing to release tension and improve body literacy.

Hello Hello! I’m Jess (insta: jess_and_elda) and this is Patient POV!  Today, I had the chance to chat with Sarah who shared her experience of living with POTS, Fibromyalgia and ME/CFS.  She has her own podcast: Be "POTS"itive! - with Sarah Reid where she gets real about having a chronic illness in her 20s and can be found on instagram @be_potsitive  You can also purchase chronic illness merch she has designed https://www.redbubble.com/people/Be-Potsitive/explore?page=1&sortOrder=recent  Notes from this show: There are some doctors that suck so we need to build our care team with professionals that care for and support you! Seeing the beauty in the right now while having hope for the future. Grief of having a chronic illness is real! You can grieve a healthy body, or a body you never got to have, learn to accept and thrive in the now. Our emotions will ebb and flow, but it is okay to process the emotions as they come. Resources:  Devotional book: Searching for Sea Glass: Journeying with God Through Chronic Illness 30 Devotions: https://www.amazon.ca/Searching-Sea-Glass-Journeying-Devotions/dp/1777721407?&_encoding=UTF8&tag=patientpov-20&linkCode=ur2&linkId=93284a8329b5900d3c3069f812ad9a1f&camp=15121&creative=330641  Compression socks  Electrolyte drinks:  Liquid IV: https://www.amazon.ca/Liquid-Hydration-Multiplier-Stick-Ounces/dp/B07MQ9CDDD/ref=pd_bxgy_sccl_1/140-1655286-8615960?pd_rd_w=VWGz3&content-id=amzn1.sym.93ae3f3f-3555-4971-a952-df8053b1d375&pf_rd_p=93ae3f3f-3555-4971-a952-df8053b1d375&pf_rd_r=VS3HC52FB7JRCTM6S3NP&pd_rd_wg=mSZkk&pd_rd_r=17279d4a-9eb9-4fac-ba7c-b46fe81d3e25&pd_rd_i=B07MQ9CDDD&psc=1&_encoding=UTF8&tag=patientpov-20&linkCode=ur2&linkId=ba19157dc38af7041a0e2164ef3fd5f2&camp=15121&creative=330641 BIOLYTE  LMNT  Salt chews from Vitassium: https://www.amazon.ca/SaltStick-Vitassium-Buffered-Electrolyte-Supplement/dp/B076MXR1LV/ref=sr_1_1?crid=MFDD3F3WL2R5&keywords=vitassium&qid=1696195690&s=grocery&sprefix=vitassium%252Cgrocery%252C74&sr=1-1-catcorr&_encoding=UTF8&tag=patientpov-20&linkCode=ur2&linkId=617aea25eb16e5a43d5c64f1879e178a&camp=15121&creative=330641  Ice packs on the go  You are not alone and everyday will look different. Remember to rest, even on the good days.

Introducing me!! Just a little in sight on my story and why I am starting this podcast!! You can also listen on Spotify!

Patient POV: Podcast by Jess Hay to empower and support those of us with chronic health conditions!