Welcome to Simply Unbreakable, a podcast from Chronically Simple, hosted by Kristy Dickinson and Brenda Agnew. Simply Unbreakable is about telling stories, learning from each other, and forging new ways to navigate the healthcare system together.
Advocating for Physician Families with Hayley Harlock
Welcome to another episode of Simply Unbreakable brought to you by Chronically Simple. Your hosts, Kristy Dickinson and Brenda Agnew are joined today by Hayley Harlock the founder of The Flipside Life, she is an advocate for physician families. Hayley is married to a vascular surgeon and a mom to three school-aged children. Hayley holds a Master of Social Work degree from Wilfrid Laurier University and previously practiced as a medical social worker at the Hospital For Sick Children.
Parents Partnering in Research with Rachel Martens
Welcome to another episode of Simply Unbreakable brought to you by Chronically Simple. Your hosts, Kristy Dickinson and Brenda Agnew are welcoming Rachel Martens to today’s episode where she shares the details of her dedicated work and the importance for parents to support researchers. Rachel is a busy advocate whose son was born with a rare chromosome diagnosis, CP, and autism.
Be the Best Advocate for Your Health with Dana Deighton
Welcome to another episode of Simply Unbreakable brought to you by Chronically Simple. Your hosts, Kristy Dickinson and Brenda Agnew are joined by Dana Deighton, the project manager of Inspire, who is sharing her amazing personal story of resilience, grit, and advocacy. Dana shares how she found out about her diagnosis, the frustration and complications of her journey to reach an effective treatment but most of all about the importance of not giving up even when everything seems to be against you.
Pandemic Fatigue with Kristy Dickinson and Brenda Agnew
Welcome to another episode of Simply Unbreakable brought to you by Chronically Simple. Your hosts, Kristy Dickinson and Brenda Agnew discuss a new year started in the middle of a pandemic. As parents, guilt and shame are sometimes inevitable, but adding a bit of grace into our daily lives can completely change our perspectives while transiting these difficult times. The pandemic has given us many hardships, but also opportunities to connect, slow down, and realize the value of what really matters.
Mental Health: A Mother’s Journey with Kristy Dickinson and Brenda Agnew
Welcome to another episode of Simply Unbreakable brought to you by Chronically Simple. Your hosts, Kristy Dickinson and Brenda Agnew are talking today about mental health. Brenda and Kristy are both mental health advocates and they openly share their own journeys in regards to their experiences in this field.
Navigating Life While Dealing with Chronic Illness with Kristy Dickinson and Brenda Agnew
Welcome to the inaugural episode of Simply Unbreakable brought to you by Chronically Simple. Your hosts, Kristy Dickinson and Brenda Agnew spent years navigating the healthcare system, building relationships and finding peace from connections with others.
Simply Unbreakable is a podcast dedicated to telling stories, learning from each other and forging new ways to help navigate our complex healthcare system and relationships.
In Simply Unbreakable you will hear stories from resilient and inspiring people who share the stories that need to be heard.
[1:30] Kristy Dickinson introduces herself.
[3:43] Kristy shares the reality of being diagnosed with a rare disease.
[5:10] Being diagnosed doesn’t mean that doctors know how to treat you.
[7:29] Kristy talks about how the physical and mental aspects you encounter when you suffer from a rare disease.
[8:30] Dealing with comorbidities is like having many diseases at once.
[9:50] Managing the mental health aspect of having a rare disease.
[13:08] Brenda shares some of the aspects of being a 24/7 caregiver.
[16:56] Brenda shares the story of her pregnancy with twins.
[21:50] Brenda talks about the moment she received a diagnosis for her child.
[26:05] Brenda and Kristy share how their sons became friends at school.
[27:46] Being the best advocate for your child or yourself is not always easy.
[30:22] Asking for help is sometimes a struggle for a caregiver.
[34:28] It shouldn't be this complex to navigate the healthcare system.
[41:05] Alleviating the path for caretakers.
[42:30] Brenda shares the details of her son’s rare condition.
[47:30] Kristy shares how some doctors assume they know about a condition and end up causing more harm than healing.
[52:30] Finding a community of people who understands your journey is priceless.
Mentioned in this episode:
Brought to you by Chronically Simple
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Simply Unbreakable is where ideas are shared and conversations about navigating the healthcare system are had. The ideas shared are those of the individuals and should not be interpreted as medical advice.
Tweetables and quotes:
"It takes 5 to 7 years to receive a proper diagnosis for a rare disease, meaning that a patient spends a decade with wrong diagnoses, uncertainty, and frustration."
“Having a rare disease is losing trust and faith in your body.”
“When a health care provider says ‘That’s Impossible’, it is the most frustrating for a patient.”
“Some doctors assume they know about a condition and end up causing more harm than healing.”
“You don’t have to go through your struggle alone.”