In Sickness

Welcome back to the podcast that we now have to just admit is quarterly. Maybe not forever though! Join us this week as we have a blast wading through the different names of dengue, the severity of it all, and getting riled up about human experimentation- as we do. Follow us on instagram for some not-so-gory visuals to back up the stories we tell, @insickness2020. 

Happy holidays to all! In the holiday spirit, we offer up our newest episode on Lyme disease, a tick-borne zoonotic disease. Just the thing to take a quick relaxing break from all the activities that we often have this time of year! Learn more about the recent (recent) history of this disease, and how it will begin to affect more and more of us due to circumstances 100% within human control. 

We revisit our first episode, where we discussed the Flu and COVID-19, and reflect on the current "tridemic" status many countries are facing right now. A brief overview of where we are right now with COVID, the flu, and RSV, just to keep us in practice.    We'll be back soon with another full length episode- happy listening! 

Content Warning: Abortion, Miscarriage, Donald Trump We're back, with another spooky halloween episode! After all, what could be scarier than the loss of a vital reproductive health service. Join us as we remember how to podcast, discuss attitudes and perceptions of abortion through history, and explain what the global gag rule is and how it might affect us all.  If you're interested in donating to support access to abortion, please consider https://abortionfunds.org/  xoxo, see you soon! 

It's a cultural norm to reply that we're “fine” when asked how we're doing, even if that isn't always an accurate answer. Caregivers find themselves hiding behind the “I'm fine!” mask even more often than others. In this episode, Justin and Allison discuss the reasons why, how caregivers can begin to say how they really are, and what supporters can do to help.

Even as they do so much for their loved ones, a common feeling experienced by caregivers is guilt. In this episode, Justin and Allison talk about feeling as if they are never doing enough, about how comparison can be dangerous, and the role that guilt plays in their caregiving lives.

Over the past year, Allison has been experiencing increasingly severe panic attacks as well as feeling physically run down. In March, she reached a breaking point that led her to take a month off of work. In this episode, she shares what those challenging weeks were like and what she is doing to heal.

After living with depression and anxiety for many years, Justin recently began a thirty-six day regimen of Transcranial Magnetic Stimulation (TMS). In this episode he shares how he came to the decision to try this course of treatment, what it's been like so far, and how it has felt to be the one in need of care.

Special guest, Liz Naylor, mother of four children with myotonic muscular dystrophy and Founding Executive Director of My-Vida, joins Allison and Justin to talk about what caregiving looks like from the parent perspective.

A disease of many faces, lupus has absolutely nothing to do with wolves, and everything to do with your immune system. Follow us on this wild ride that starts with Queen Anne and millipedes, and ends with Ivermectin and orchids. You'll see what we mean.  

As caregivers we are attuned to the needs and moods of our loved ones and spend our days showing them care and compassion. However, we rarely transfer those same skills to ourselves. In this episode, Allison and Justin talk about simple ways we can start to implement self compassion when it comes to our thoughts, moods, and mistakes. Kristin Neff - self-compassion.org

Even in the hardest of times, caregivers often shoulder the weight of it all instead of asking for support. In this episode, Justin and Allison talk about what initially pushed them to reach out for help, why doing so can feel so difficult, and logistically how they made it work.

Caregiving is a lonely role. From moments of being physically alone to situations where no one understands their reality, Allison and Justin talk together about the loneliness of being a caregiver.

From the mundane details of each day to moments of medical emergencies to treatment plans to COVID safety, caregivers are constantly making decisions. In this episode, Justin and Allison talk about what that looks and feels like in their daily lives and how their personalities impact their decision-making skills.

The celebration of Justin's 40th birthday led him to reflect on where he thought he would be at this time in his life versus where he is. In this episode, he and Allison talk about how becoming caregivers changed their trajectories, how they are trying to claim the role without losing themselves in it, and how to remember and focus on who they are, not just what they do.

We're back with another holiday themed blood disease everyone! Tune in to hear with this is (loosely) festive, as well as get the hot takes on the Romanovs, the royal disease, and the modern world of hemophilia treatment.    Keep safe, warm, and healthy, and we'll see you in 2022! 

When you are part of a rare disease or chronic illness community, there is comfort in building relationships with others whose lives look like your own, those who understand the terminology and the reality of your daily life. However, those important friendships can lead to unhelpful comparisons or even heartache as friends are lost to the disease. Listen in as Allison and Justin describe the ups and downs they've experienced in friendships with fellow caregivers and with those living with chronic and serious illnesses.

As chronic illness caregivers, Justin and Allison are used to experiencing daily challenges, but in the past weeks they've both found themselves in unexpected medical situations beyond their norm.

Allison and Justin describe the unique challenges that arise when the person you're caring for has an invisible illness.  Allison's piece mentioned in the show: The Invisible Traveler --- November is caregiver appreciation month, and to celebrate we're giving away one of Allison's Caregiver Gift Boxes along with some other treats! We'll pick a winner at the end of November, and they can either send it to a caregiver in their life, or if they are a caregiver, they can keep it for themselves. Click here to enter!

As if the topic of this podcast wasn't scary enough already...enjoy this spooooooky halloween minisode! This week we indulge ourselves with myths, mystery, literature, and a little pop culture. Learn with us about vampires as a disease, disease as a vampire, and how the two may be inextricable. Until next time, happy haunting.

Justin and Allison discuss the ways in which caregiving impacts their physical, emotional, and mental health, what burnout feels like to them, and how supporters can help.

Allison describes the recent battles she has been fighting since learning that Sean's home health supplies are not covered under Medicare. Justin shares the dehumanizing process Sarah went through when applying for disability. Both dig in to what it feels like to fight back against a broken system.

Allison and Justin talk about the difficult reality of being a caregiver for someone with a lifelong chronic illness. They discuss how things  felt at the beginning, how they keep going, as well as how people can better support those in these long term caregiving situations.

Special guest, Kyle Woody, Executive Director of Jack's Caregiver Coalition, and Justin talk about the unique challenges faced by men who are caregivers. Kyle also shares the free resources provided by Jack's to male and female caregivers alike. --- Jack's Caregiver Coalition Man Enough to Care

After more than a year of being at home, Allison and Justin talk about the travel opportunities they have taken this summer, both with and without their spouses. They discuss what it's like to leave their partners and their caregiving responsibilities behind.

Justin and Allison dig into what it feels like to be the physically healthy partner in their relationships, including the grief and struggle they experience when they are able to do things that their spouses cannot.

Allison and Justin talk about their upcoming summer travel plans: Allison with her spouse and Justin without. They cover the challenges and preparation needed for both situations and dig into why they struggle to delegate their caregiving responsibilities.

Justin and Allison talk about how it feels when caregivers are told to find meaning in their hardships and to celebrate and seek well-being through their roles. Spoiler Alert: It doesn't feel good. They discuss what does feel supportive and what kind of spaces they would like to see more of in the caregiving community.

Allison and Justin discuss how, on top of their caregiving responsibilities, they are weighed down with outside pressures, such as feeling the need to advocate on behalf of their spouses' diseases, the constant reminders to take care of themselves, and the new pressures and questions surrounding protocols now that things are starting to open up. They discuss the impact these pressures have on them, what they do to release some of that pressure, and what others can do to help.

Justin and Allison process together how life is changing now that they and their spouses are fully vaccinated. They discuss how and if their caregiving roles will be different as the world opens up as well as what they hope people remember from this time.

Justin and Allison both married their spouses years before either of them became ill, but have now spent more years of their marriages as caregivers than not. In this episode, they talk about how married life, roles, and relationships have changed in the time since the diagnoses, as well as what it feels like looking towards the futures that are not what they imagined on their wedding days. --- Terrible, Thanks for Asking - Fairplay at Home

After attending a summit on caregiving, Allison shares what she learned about potential policy changes that may support caregivers. She and Justin talk about what they would wish for in terms of systemic change and what it feels like to have this role seen and recognized by people in positions of power. Also, Justin joins the Pandemic Puppy Club! --- Care Can't Wait Summit Already Toast: Caregiving and Burnout in America Caregiver Gift Boxes

Justin and Allison talk openly about the state of their mental health before becoming caregivers and the ways this role has impacted their anxiety and depression. Justin also shares how a new medication is impacting his wife's overall well-being. --- If you or someone you know is struggling with mental health, information and resources are available from the National Alliance on Mental Health by calling 1-800-950-6264 or visiting nami.org/help

After multiple treatments were unsuccessful, Justin and his wife had settled into the reality of life with her chronic illness. At a recent appointment, their doctor mentioned a promising new study in which some Myalgic encephalomyelitis (ME) patients saw improvements when adding a new medication. Listen in as Justin shares what it feels like to have a glimmer of hope and as he and Allison talk about the experiences they have had over the years of having, losing, and being devastated by hope. Links: The Puzzle Solver: A Scientist's Desperate Quest to Cure the Illness That Stole His Son How to be Sick Zoey's Extraordinary Playlist

A special birthday episode, for our special birthday host, Angeliki! It says a lot about both of us as people that this might be one of our favourite ways to celebrate- if we can't be together of course. Deep dive with us on this episode, as we look at the origins of human history, colonialism, and their direct repercussions in the modern day, through the lens of sleeping sickness.  This is the disease that launched 16 episodes (our origin story), and one that we had a lot of fun/trauma with. Hope you enjoy! 

Allison found out about her husband's most recent cancer diagnosis when an alert popped up in his MyChart account announcing a new Test Result. Listen in as she describes to Justin what the moments and days after opening that message have been like as her family sits with a diagnosis but not yet a plan.

Coming off of three weeks of being sick, Allison talks with Justin about what it’s been like to be under the weather while caregiving. The two of them talk about what drives them to do all that they do and discuss how challenging it is when they are out of commission.

Why the long wait, why the take two? Good old fashioned technological illiteracy! Enjoy our finely honed (read: done twice because Maya deleted her audio) analysis of the history and current context of Human Papilloma Virus- and find out what that name means. For which we sincerely apologize.  Join the confusion as we dive into this gendered STD, and the conversation over on our Instagram. See you soon!

In this episode, Justin and Allison talk about how Covid being a worldwide phenomenon provides an opportunity for all of us to talk about and work through our grief around it more easily, using our common language and experiences. They dig into how these moments can be used as a practice ground for having conversations about and processing hard things, as well as making room and time to celebrate amidst it all.

On this episode of In Sickness we discuss the plague, then and now. Fans of the Black Death (we use the word fan very lightly here) will be pleased to know that there are many more types and strains of plague to learn about, and even to contract in the modern day! Hurray! Curious as to how the plague relates to at least three Disney movies, our opinions on national borders, and much more? Tune in, and start the new year right- with a nice dose of disease.    Wishing you a happy and healthy 2021, may you never get any of our diseases!  - Maya and Angeliki

Justin and Allison talk about several moments in recent days when they have found themselves in the midst of a medical crisis with their partners and what it felt during and in the aftermath of those situations.

Allison and Justin discuss how the unusual circumstances of this holiday season may better allow our families’ needs to be met and how this year can be used to reimagine what family gatherings can look like in the future.

With the addition of new recording equipment we are back and better than ever, happy to present you with a really late Spooky Halloween/ really early Christmas episode (depending on your perspective)! Today we discuss Ergot, a fungus that grows primarily on rye, and has a myriad of terrifying side effects. I don't want to give away much else but it's creepy, crawly, and as usual, people die!  Tune in, and we promise we won't make you wait long for the next!!

Allison and Justin talk about how Covid has impacted their households recently and how the toll and stress of waiting doesn't end when we get good news. They also follow up on toxic positivity. November is Caregiver Appreciation Month, and to celebrate we're giving away one of Allison's new Caregiver Gift Boxes. We'll pick a winner at the end of November. Click here to enter! Allison's piece on waiting.

Allison and Justin talk about how toxic positivity is used by and towards caregivers, and can lead to feelings of being dismissed and unheard. They share ideas of how to share and hear hard things without always going to the bright side. November is Caregiver Appreciation Month, and to celebrate we're giving away one of Allison's new Caregiver Gift Boxes. We'll pick a winner at the end of November. Click here to enter!

Hi friends of the pod! We're back, and we're seasonally themed (whether we are better than ever or not, is up to you). This week we discuss lead poisoning. Thematically, yes it's a bit weak- but there are lead poisoning epidemics, and hey, it's nearly halloween. Few things are spookier than poison, right?  We discuss toxic makeup, plumbing, and traditional medicine through the ages. Tune in next time for more toxic trends and poisonous parley!  

Allison and Justin talk about the extra challenges they face as caregivers of people who live with rare conditions, including education of family members, friends, and medical staff. Also, Allison got a puppy.

Allison and Justin talk about how friends and family have shown up to support them throughout their caregiving journey. They offer advice to supporters for ways to provide support and give some suggestions to those caregivers who are lacking support.

Allison and Justin talk about how caregivers need community care in order to practice self care, how they each practice acts of micro-care throughout the day, and what supporters can do and say instead of, “Are you taking care of yourself?”

In honour of wild polio being eliminated in Africa this week, we explore the roots of the disease, and the study of it over the years (and where it failed- because of course we have thoughts about that). We learn more interesting facts about Tuskegee, conspiracy, a man named Heine, and much much more.    Join us here, and on Instagram where we'll be posting some interesting images of the history of polio @InSickness2020. See you next time! 

Allison and Justin talk about the challenges and stresses of working full time jobs while caring for their spouses. They discuss what their employers have done to support them, how they advocate for themselves at work, and just how hard it is to balance it all.