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.

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. 

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.

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.

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.

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

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.

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.

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)

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/