I've been on hiatus following Claire Wineland's death, but little do most of you know I've been in a tough place on this topic for awhile. So, to honor her death-positive mission, and my own process, I'm pushing ahead, starting with this topic -- including the flip side of being aware of one's mortality. I have already discussed what it feels like to die - it's where we started this journey. Then I talked a fair amount about losing my best friend recently and how much death just follows me; I've lost an infinite amount of loved ones it seems. But, what does that do to me? To how I live my life? To how I approach death? Especially as someone with a chronic illness that could take me whenever? Let's dive in.✧ Twitter: https://www.twitter.com/rollwthepunches✧ Quick Disability FAQ:-I have the trifecta of EDS (Ehlers-Danlos Syndrome, mostly hypermobile, but with some crossover into vascular) / POTS (Postural Orthostatic Tachycardia Syndrome) / MCAS (Mast Cell Activation Syndrome)-I also have Erythromelalgia (aka "Man on Fire").-Wheelchair user-I also have many mental health complications from severe childhood trauma, but will mostly focus on medical disability here.✮✮✮I'm Kaalyn, chronic illness warrior, wheelchair bamf and certified hellion for the greater good. Fueled by compassion, hungry for education, and always good for a laugh. Here are my thoughts.
After tackling the "opioid crisis" in earlier podcasts and why so many find themselves trying or using hard drugs, I decided to take on the aspects NO ONE talks about. What is it about using hard drugs that keep users stuck or constantly coming back -- things that have NOTHING to do with the drug itself. Controversial at best, I still wish more would talk about this, including therapists with their clients. It's how we understand ourselves and become well.✧ Twitter: https://www.twitter.com/rollwthepunches✧ Quick Disability FAQ:-I have the trifecta of EDS (Ehlers-Danlos Syndrome, mostly hypermobile, but with some crossover into vascular) / POTS (Postural Orthostatic Tachycardia Syndrome) / MCAS (Mast Cell Activation Syndrome) -I also have Erythromelalgia (aka "Man on Fire"). -Wheelchair user -I also have many mental health complications from severe childhood trauma, but will mostly focus on medical disability here.✮✮✮I'm Kaalyn, chronic illness warrior, wheelchair bamf and certified hellion for the greater good. Fueled by compassion, hungry for education, and always good for a laugh. Here are my thoughts.TIMESTAMPS FOR EASIER LISTENING! 0:00 -- General Intro 3:00 -- Background on why this topic is important 7:56 -- A light disclaimer on "who an addict is", who I am thinking of in this podcast, and the kinds of addicts I'm NOT trying to humanise here 11:35 -- Generalised summary of why people use heroin and/or why they go back 13:30 -- "Needle Allure" 15:00 -- Regaining bodily autonomy via needles 17:58 -- Completely transforming the relationship to their body 19:53 -- Being blindsided by an unexpected "positive" 20:44 -- Developing accidental self-intimacy, self-care or self-love 24:09 -- Why some continue to inject water 25:15 -- The ritual/routine and/or obsession to it all 33:00 -- Feeling POWERFUL. Invincibility, pride, esteem. 37:10 -- Super important DO NOT DO THIS disclaimer 38:25 -- The thrill factor 42:07 -- Self-fulfilling or self-rejecting prophecies 49:50 -- THE BIGGEST THING: Friends, socialisation, connection, a reason to shower and go outside 1:01:28 -- A bit of a summary/closing statement on why this matters 1:12:00 -- Outro
I decided to take the deep plunge into the many, many things that are difficult about being a medical and/or mental health advocate online. There are so many brilliant, incredible things that come alongside this work, but sometimes we need to level and be real about the junk that comes along with it, too. Some of it is mere nuisance, but there is a lot that is incredibly damaging. We need to be real about this.Timestamps for easier listening below!!✧ Twitter: https://www.twitter.com/rollwthepunches✧ Quick Disability FAQ-I have the trifecta of EDS (Ehlers-Danlos Syndrome, mostly hypermobile, but with some crossover into vascular) / POTS (Postural Orthostatic Tachycardia Syndrome) / MCAS (Mast Cell Activation Syndrome)-I also have Erythromelalgia (aka "Man on Fire").-Wheelchair user-I also have many mental health complications from severe childhood trauma, but will mostly focus on medical disability here.✮✮✮I'm Kaalyn, chronic illness warrior, wheelchair bamf and certified hellion for the greater good. Fueled by compassion, hungry for education, and always good for a laugh. Here are my thoughts.0:00 — Introduction 3:05 — My history as an online mental/medical health advocate (15yrs!) 5:18 — (Bonus point) Getting people to listen to you/follow/care/etc when you're an advocate for rare or unfamiliar illnesses 7:38 — So. much. unsolicited. advice. 10:18 — Balancing not being "that guy", but also being a helpful friend/advocate to those in need. Helping your community as they help you, but not butting in. 12:28 — The vulnerability/danger of having your illnesses visible in your profile or known publicly 16:27 — Caution to those fresh in their diagnoses (especially trauma) who want to immediately jump into awareness 17:30 — Unique pressures of being an advocate for others vs. just sharing your story 18:50 — Personal, invasive questions! 23:00 — The Catch 22: when these incessant, invasive questions actually KEEP us from ever having those important conversations w/ each other on those very issues 27:02 — Expectation to educate all. the. time. 32:15 — Becoming one-dimensional. Talk about anything other than disability? Unfollow. Basically, "Don't be a person.". 36:36 — Voyeurism and entertainment from your illness. "Be sicker, it's more entertaining for me." 38:34 — THE MOTHER LODE: *THE DISABILITY OLYMPICS*. COMPARISONS! 49:14 -- Guilt for not doing enough, not raising more awareness, not posting enough, educating enough 50:25 -- Backlash of educating TOO much and/or offering corrections. ☠️(But also why misinformation can be especially harmful in these communities.) 58:35 — Being shamed or called a faker/snowflake/liar for having "too many conditions/diagnosis", esp if you have both medical and mental illnesses 1:10:08 — Free labor, doing everyone else's work, not being compensated 1:11:45 — Amassing a large following, being seen as "the representative" for your condition(s), and the paradox of holding great power in your community but then having NONE in the real world 1:16:00 — Surrounded by just so. much. suffering. daily 1:22:30 — Losing so many beautiful people to their illnesses. Such endless grief. 1:28:28 — Outro
*deep breath* I wanted to tackle my thoughts and feelings on the "opioid crisis". Only, I wanted to tackle it from every side. I know both extremes well depending on where I spend my time, but I'm someone who's experienced them all — chronic pain, being denied care, personal addiction, and losing best friends to their own opiate addictions and/or pill abuse. Opiates aren't good OR bad, they're good AND bad, and we need to more thoughtfully explore these conversations. Because, the people on both sides are just in pain — deep, excruciating pain. There is no easy solution, though I tried to supply as many as I could think of in the end.✧ Twitter: https://www.twitter.com/rollwthepunches✧ Quick Disability FAQ:-I have the trifecta of EDS (Ehlers-Danlos Syndrome, mostly hypermobile, but with some crossover into vascular) / POTS (Postural Orthostatic Tachycardia Syndrome) / MCAS (Mast Cell Activation Syndrome)-I also have Erythromelalgia (aka "Man on Fire").-Wheelchair user-I also have many mental health complications from severe childhood trauma, but will mostly focus on medical disability here.✮✮✮I'm Kaalyn, chronic illness warrior, wheelchair bamf and certified hellion for the greater good. Fueled by compassion, hungry for education, and always good for a laugh. Here are my thoughts.
Inspired by Wheels No Heels (Gem Hubbard), I wanted to share my experiences with the wild things people say to wheelchair-users and the insensitive conversations that we find ourselves in all the time. ....complete with entertaining anecdotes and ludicrous scenarios that I honestly hope supplies some comedy and levity to your day. This was recorded during a brutal, emotional week coping with the children at the border, so I wanted to go back to focus on when I recorded this and brought some lightness into the week, despite a frustrating subject matter. I hope it helps!✧ Twitter: https://www.twitter.com/rollwthepunches✧ Quick Disability FAQ:-I have the trifecta of EDS (Ehlers-Danlos Syndrome, mostly hypermobile, but with some crossover into vascular) / POTS (Postural Orthostatic Tachycardia Syndrome) / MCAS (Mast Cell Activation Syndrome)-I also have Erythromelalgia (aka "Man on Fire").-Wheelchair user-I also have many mental health complications from severe childhood trauma, but will mostly focus on medical disability here.✮✮✮I'm Kaalyn, chronic illness warrior, wheelchair bamf and certified hellion for the greater good. Fueled by compassion, hungry for education, and always good for a laugh. These are my thoughts.
This is a big topic, divided in two parts. First, my journey with and relationship with pain - both physical and mental - and then all the ways I have learned to cope with being in daily, unrelenting pain. This is a particularly difficult challenge when your physical and mental pain as a complex trauma survivor are equally matched. Balancing the intersections of these two kinds of suffering is such a delicate act, and is really hard to do. Despite never having a break from either, I am still figuring it out. But, hopefully something I share here speaks to you, allows you to relate, or even gives you ideas on how to face your own battles. It may also leave those with disabled or mentally struggling loved ones with more compassion toward their suffering and daily fight for wellness.✧ Twitter: https://www.twitter.com/rollwthepunches✧ Quick Disability FAQ:-I have the trifecta of EDS (Ehlers-Danlos Syndrome, mostly hypermobile, but with some crossover into vascular) / POTS (Postural Orthostatic Tachycardia Syndrome) / MCAS (Mast Cell Activation Syndrome)-I also have Erythromelalgia (aka "Man on Fire").-Wheelchair user-I also have many mental health complications from severe childhood trauma, but will mostly focus on medical disability here.✮✮✮I'm Kaalyn, chronic illness warrior, wheelchair bamf and certified hellion for the greater good. Fueled by compassion, hungry for education, and always good for a laugh. Here are my thoughts.
Welcome to the first episode of my new informal, unstructured mini-podcast. ....jumping right in with those super simple, lowkey topics like chronic illness, death, the process of dying, and challenging the idea of "going with grace". While a hard topic, I do I hope the second half of this leaves you feeling encouraged, moved and enlightened to life your life in more a meaningful way.Since initial upload, Claire Wineland, who I mention heavily in this, passed away. It rocked my world. So, I added this very important note:IMPORTANT UPDATE: It's taken me awhile to make this update bc the loss of Claire Wineland -- the very person who encouraged me to start making digital media again, and someone I adored since she became a teenager -- hit me really hard. I considered removing this podcast bc it mentioned her so heavily, and is specifically about death and dying, which I thought may seem like it's in bad taste. But, Claire was an honest, healthy death advocate. She encouraged these conversations, she faced them, she got the world (and myself) more comfortable with death and being willing to fight or your life.Claire fought. She always fought. She wanted to be here. But she also went with grace when her body realised it'd had enough. She managed both. And that's a feat that I imagine few of us get to do in our lifetime. Because of her fight and her fearlessness to tackle this reality head on, I believe it's HOW she was able to both fight with the fierceness we all know in Claire, AND also be at peace. To be okay. To give herself and her family a beautifully peaceful last moment. And? Not miss a chance to take her first and final breath in her new lungs.It's because of this, I will leave this podcast up. I still feel and believe in these things just as I did when I recorded it. And, I will continue to learn from Claire, even long after she's gone.
[Timestamps Below] After tackling the "opioid crisis" and why so many find themselves trying or using hard drugs, I decided to take on the aspects NO ONE talks about. What about using hard drugs keep users stuck or constantly coming back -- things that have NOTHING to do with the drug itself. Controversial at best, I still wish more would talk about this, including therapists with their clients. It's how we understand ourselves and become well. ✧ Twitter: https://www.twitter.com/rollwthepunches ✧ Quick Disability FAQ: -I have the trifecta of EDS (Ehlers-Danlos Syndrome, mostly hypermobile, but with some crossover into vascular) / POTS (Postural Orthostatic Tachycardia Syndrome) / MCAS (Mast Cell Activation Syndrome) -I also have Erythromelalgia (aka "Man on Fire"). -Wheelchair user -I also have many mental health complications from severe childhood trauma, but will mostly focus on medical disability here. ✮✮✮ I'm Kaalyn, chronic illness warrior, wheelchair bamf and certified hellion for the greater good. Fueled by compassion, hungry for education, and always good for a laugh. Here are my thoughts. TIMESTAMPS FOR EASIER LISTENING! 0:00 -- General Intro 3:00 -- Background on why this topic is important 7:56 -- A light disclaimer on "who an addict is", who I am thinking of in this podcast, and the kinds of addicts I'm NOT trying to humanise here 11:35 -- Generalised summary of why people use heroin and/or why they go back 13:30 -- "Needle Allure" 15:00 -- Regaining bodily autonomy via needles 17:58 -- Completely transforming the relationship to their body 19:53 -- Being blindsided by an unexpected "positive" 20:44 -- Developing accidental self-intimacy, self-care or self-love 24:09 -- Why some continue to inject water 25:15 -- The ritual/routine and/or obsession to it all 33:00 -- Feeling POWERFUL. Invincibility, pride, esteem. 37:10 -- Super important DO NOT DO THIS disclaimer 38:25 -- The thrill factor 42:07 -- Self-fulfilling or self-rejecting prophecies 49:50 -- THE BIGGEST THING: Friends, socialisation, connection, a reason to shower and go outside 1:01:28 -- A bit of a summary/closing statement on why this matters 1:12:00 -- Outro
Thought I'd take the deep plunge into all of the things that are difficult about being a medical and/or mental health advocate online. There are a ton of brilliant, incredible things, too, but sometimes we just need to address all the junk that come along with it. Timestamps for easier listening below!! (Note: used from YouTube, may be a couple seconds different!) 0:00 — Introduction 3:05 — My history as an online mental/medical health advocate (15yrs!) 5:18 — (Bonus point) Getting people to listen to you/follow/care/etc when you're an advocate for rare or unfamiliar illnesses 7:38 — So. much. unsolicited. advice. 10:18 — Balancing not being "that guy", but also being a helpful friend/advocate to those in need. Helping your community as they help you, but not butting in. 12:28 — The vulnerability/danger of having your illnesses visible in your profile or known publicly 16:27 — Caution to those fresh in their diagnoses (especially trauma) who want to immediately jump into awareness 17:30 — Unique pressures of being an advocate for others vs. just sharing your story 18:50 — Personal, invasive questions! 23:00 — The Catch 22: when these incessant, invasive questions actually KEEP us from ever having those important conversations w/ each other on those very issues 27:02 — Expectation to educate all. the. time. 32:15 — Becoming one-dimensional. Talk about anything other than disability? Unfollow. Basically, "Don't be a person.". 36:36 — Voyeurism and entertainment from your illness. "Be sicker, it's more entertaining for me." 38:34 — THE MOTHER LODE: *THE DISABILITY OLYMPICS*. COMPARISONS! 49:14 -- Guilt for not doing enough, not raising more awareness, not posting enough, educating enough 50:25 -- Backlash of educating TOO much and/or offering corrections. ☠️(But also why misinformation can be especially harmful in these communities.) 58:35 — Being shamed or called a faker/snowflake/liar for having "too many conditions/diagnosis", esp if you have both medical and mental illnesses 1:10:08 — Free labor, doing everyone else's work, not being compensated 1:11:45 — Amassing a large following, being seen as "the representative" for your condition(s), and the paradox of holding great power in your community but then having NONE in the real world 1:16:00 — Surrounded by just so. much. suffering. daily 1:22:30 — Losing so many beautiful people to their illnesses. Such endless grief. 1:28:28 — Outro ✧ Twitter: https://www.twitter.com/rollwthepunches ✧ Quick Disability FAQ: -I have the trifecta of EDS (Ehlers-Danlos Syndrome, mostly hypermobile, but with some crossover into vascular) / POTS (Postural Orthostatic Tachycardia Syndrome) / MCAS (Mast Cell Activation Syndrome) -I also have Erythromelalgia (aka "Man on Fire"). -Wheelchair user -I also have many mental health complications from severe childhood trauma, but will mostly focus on medical disability here. ✮✮✮ I'm Kaalyn, chronic illness warrior, wheelchair bamf and certified hellion for the greater good. Fueled by compassion, hungry for education, and always good for a laugh. Here are my thoughts.
*deep breath* I wanted to tackle my thoughts and feelings on the "opioid crisis". Only, I wanted to tackle it from every side. I know both extremes well depending on where I spend my time, but I'm someone who's experienced them all — chronic pain, being denied care, personal addiction, and losing best friends to their opiate addictions. Opiates aren't good OR bad, they're good AND bad, and we just need to more thoughtfully explore these conversations. Because, the people on both sides are just in pain — deep excruciating pain. And, there is no easy solution, though I tried to supply as many as I could think of by the end. ✧ Twitter: https://www.twitter.com/rollwthepunches ✧ Quick Disability FAQ: -I have the trifecta of EDS (Ehlers-Danlos Syndrome, mostly hypermobile, but with some crossover into vascular) / POTS (Postural Orthostatic Tachycardia Syndrome) / MCAS (Mast Cell Activation Syndrome) -I also have Erythromelalgia (aka "Man on Fire"). -Wheelchair user -I also have many mental health complications from severe childhood trauma, but will mostly focus on medical disability here. ✮✮✮ I'm Kaalyn, chronic illness warrior, wheelchair bamf and certified hellion for the greater good. Fueled by compassion, hungry for education, and always good for a laugh. Here are my thoughts.
Inspired by Wheels No Heels (Gem Hubbard), I wanted to share my experiences of the wild things people say to wheelchair-users and the insensitive conversations that can find yourself in. ....complete with entertaining stories and ludicrous scenarios that I honestly hope you can find some comedy in over all. It's been a brutal, emotional week coping with the children at the border, so I wanted to go back to when I recorded this and inject some levity into the week. I hope it helps! ✧ Twitter: https://www.twitter.com/rollwthepunches ✧ Quick Disability FAQ: -I have the trifecta of EDS (Ehlers-Danlos Syndrome, mostly hypermobile, but with some crossover into vascular) / POTS (Postural Orthostatic Tachycardia Syndrome) / MCAS (Mast Cell Activation Syndrome) -I also have Erythromelalgia (aka "Man on Fire"). -Wheelchair user -I also have many mental health complications from severe childhood trauma, but will mostly focus on medical disability here. ✮✮✮ I'm Kaalyn, chronic illness warrior, wheelchair bamf and certified hellion for the greater good. Fueled by compassion, hungry for education, and always good for a laugh. These are my thoughts.
Our "mini-podcast" is no longer so "mini" anymore! But, this is a big topic, divided in two: my journey with and relationship to pain, and now how I deal and cope with being in daily, unrelenting pain. Balancing the intersections of emotional and physical is such a delicate act, and really hard to do. I know no shortage of either and am still figuring it out, but hopefully something I share can speak to you, help you relate, or even give you ideas on how to face your own battles. ✧ Twitter: https://www.twitter.com/rollwthepunches ✧ Quick Disability FAQ: -I have the trifecta of EDS (Ehlers-Danlos Syndrome, mostly hypermobile, but with some crossover into vascular) / POTS (Postural Orthostatic Tachycardia Syndrome) / MCAS (Mast Cell Activation Syndrome) -I also have Erythromelalgia (aka "Man on Fire"). -Wheelchair user -I also have many mental health complications from severe childhood trauma, but will mostly focus on medical disability here. ✮✮✮ I'm Kaalyn, chronic illness warrior, wheelchair bamf and certified hellion for the greater good. Fueled by compassion, hungry for education, and always good for a laugh. Here are my thoughts.
Welcome to my new informal, unstructured mini-podcast. ....jumping right in with those suuuper simple, lowkey topics like chronic illness, death and "going with grace". I hope the second half of this leaves you feeling encouraged, moved and enlightened in a meaningful way. ✧ Twitter: https://www.twitter.com/rollwthepunches ✧ Quick Disability FAQ: -I have the trifecta of EDS (Ehlers-Danlos Syndrome, mostly hypermobile, but with some crossover into vascular) / POTS (Postural Orthostatic Tachycardia Syndrome) / MCAS (Mast Cell Activation Syndrome) -I also have Erythromelalgia (aka "Man on Fire"). -Wheelchair user -I also have many mental health complications from severe childhood trauma, but will mostly focus on medical disability here. ✮✮✮ I'm Kaalyn, chronic illness warrior, wheelchair bamf and certified hellion for the greater good. Fueled by compassion, hungry for education, and always good for a laugh. Here are my thoughts.