Chronically Illing Out

Welcome to Ch-Illing Out with Nick Paro, Beth Cruz, Soso, and Steph Wilson where we take time to focus on living with chronic illnesses. This is a community where chronic conditions are seen, heard, and valued. sickofthis.substack.com

  1. Sep 7

    Chronically Illing Out | E46 - Starting Labor Day Off On the Best Foot

    Summary Nick Paro, Beth Cruz, Stephanie Wilson, and Soso came on air on Labor Day itself and made the holiday do double duty. Nick tied the weekend most people spend grilling to the reason anyone has it — organized labor won the weekend and the eight-hour day — and then extended the argument to Texas v. Kennedy, the 504 settlement effort that would erode Olmstead and, with it, the right of chronically ill people to work at all. That framing gave the episode its spine: labor rights and disability rights are the same fight seen from two angles, which is why Disability Community for Democracy’s push to codify Olmstead through the proposed Curtis Wilson Act belongs on a chronic-illness show rather than a policy show. The panel then answered a listener question from Daniel by reintroducing their conditions in full — fibromyalgia, radiculopathy and neuropathy, chronic daily migraine, psoriatic arthritis, optic nerve atrophy, CPTSD, an MS workup Nick is still waiting on — and the accounting doubled as an argument. Nick pushed back hard on being told fibromyalgia is “a woman’s disease,” and Soso, newly diagnosed with perimenopause amplifying her fibro pain, landed the episode’s most useful claim: patients are the experts on their own bodies, and walking into an unfamiliar clinic with your symptoms written down is a form of self-advocacy, not arrogance. What kept the hour from turning grim was that it refused to. Rocks Against Flocks, a tub of f***s to give, pole dancing at the polls, Stephanie’s double rainbow over the bay — the jokes were not filler. They were the thing being demonstrated: community as the treatment plan, which is what Nick meant when he said he started this because he was tired of being alone at work. Orgs, Programs, and Terms Mentioned Organizations / Programs: * Disability Community for Democracy — organizing the lobbying push and the Curtis Wilson Act draft * Valor Media Network — raising funds for 1,000 care packages for USS Abraham Lincoln sailors and Marines * Power the Polls — recruiting paid poll workers ahead of the next election Terms / Concepts: * Olmstead — the Supreme Court ruling establishing that people with disabilities have the right to live and work in their communities * Section 504 — federal non-discrimination protection covering any entity receiving federal dollars, not just schools * Texas v. Kennedy — the lawsuit whose proposed settlement would narrow 504 and undercut Olmstead Sources & References * Disability Community for Democracy — Official Statement: Why We Refuse * USS Abraham Lincoln Welcome Home Fundraiser Disclaimer Chronically Illing Out is a podcast and weekly roundtable discussion that provides a safe space for real chronic illness and mental health conversations—by people with lived experience. We are not trained professionals—and we do not claim to be—rather, we discuss our stories and current events to build community and solidarity. Know that you are not alone—and if you are in crisis, call/text 988. Actions You Can Take Get your Sick of this Shit merch! * Check out the Sick of this Shop! Join the efforts to unmask law enforcement and de-flock the States: * deflock.me Service members can get un-biased information on legal vs illegal orders: * Orders Project * Reach out on Signal: @TheOrdersProject.76 Learn empathy forward, human centered, experiment based Leadership & Growth Courses for Higher Ed & Non-Profit Professionals: * B. Cognition Labs Nick’s Notes I’m Nick Paro, and I’m sick of the shit going on. So, I’m using poetry, podcasting, and lives to discuss the intersections of chronic illness and mental wellbeing, masculinity, veteran’s issues, politics, and so much more. I am only able to have these conversations, bring visibility to my communities, and fill the void through your support — this is a publication where engagement is encouraged, creativity is a cornerstone, and transparency is key — please consider becoming a paid subscriber today and grow the community! Join the uncensored media at the 1A Collective Support as a paid subscriber however you can — to help get you started, here are a few discounted options for you * Forever at 50% off * Forever at 60% off For support, contact us at: info@sickofthisshitpublications.com Thank you Nieta Greene, Jeremiah Johnson Jubilee, Daniel Carvajal, Amelia Hall, MSW, CPACC, Courtney M 🇨🇦🏳️‍🌈, and many others for tuning into my live video with Stephanie G Wilson, PhD and Soso's World! Join me for my next live video in the app. This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit sickofthis.substack.com/subscribe

    Chronically Illing Out | E46 - Starting Labor Day Off On the Best Foot
  2. Aug 24

    Chronically Illing Out | E44 - Starting the Week Managing the Stressers

    Ch-Illing In Review Summary This week starts with kids leaving for school and ends up somewhere more interesting: how differently wired nervous systems actually process relief. Nick uses music to steer his emotions on purpose — classical when he wants to feel the feeling, wordless electronica when he needs to write code without typing the lyrics he hears. Stephanie describes the opposite reaction, where music “really grates and makes me feel jittery” unless it is so familiar it can sit in the background. Soso lands between them, singing loud in the car but needing silence to write. Three people, one tool, three incompatible results — which is the point the panel keeps circling. Soso brings in Dabrowski’s overexcitabilities and the idea of twice exceptionality, and Stephanie extends it to synesthesia in the chronic illness community: “our wires are crossed in interesting and just really fascinating ways.” The conversation gains weight when it turns to parenting. Nick describes deliberately taking his son off ADHD medication over the summer so the kid learns his own baseline, and teaching small stims for classrooms where large ones get punished. The honest part is the failure — “I’m not you. Those aren’t going to work for me” — and Stephanie’s answer, that kids bank the tool now and pull it out years later. The hour closes with Nick playing his own composition, Suite of Dances Movement No. 4, and the panel sending love to Beth Cruz, absent and having a hard week. Which is the practical thesis: the tools are personal, the community is not. Actions You Can Take Get your Sick of this Shit merch! * Check out the Sick of this Shop! Join the efforts to unmask law enforcement and de-flock the States: * deflock.me Service members can get un-biased information on legal vs illegal orders: * Orders Project * Reach out on Signal: @TheOrdersProject.76 Learn empathy forward, human centered, experiment based Leadership & Growth Courses for Higher Ed & Non-Profit Professionals: * B. Cognition Labs Nick’s Notes I’m Nick Paro, and I’m sick of the shit going on. So, I’m using poetry, podcasting, and lives to discuss the intersections of chronic illness and mental wellbeing, masculinity, veteran’s issues, politics, and so much more. I am only able to have these conversations, bring visibility to my communities, and fill the void through your support — this is a publication where engagement is encouraged, creativity is a cornerstone, and transparency is key — please consider becoming a paid subscriber today and grow the community! Join the uncensored media at the 1A Collective Support as a paid subscriber however you can — to help get you started, here are a few discounted options for you * Forever at 50% off * Forever at 60% off For support, contact us at: info@sickofthisshitpublications.com Thank you Dana Britt, Stacey carney, Nieta Greene, Jason P. Odell 📷, Leilani, and many others for tuning into my live video with Stephanie G Wilson, PhD and Soso's World! Join me for my next live video in the app. This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit sickofthis.substack.com/subscribe

    Chronically Illing Out | E44 - Starting the Week Managing the Stressers
  3. Aug 17

    Chronically Illing Out | E43 - Letting Go Of the Self Judgement

    Ch-Illing Out in Review Today’s conversation opens where the guilt actually lives: not just in the flare itself but in the apology to the self that follows it. Soso returns after two months away, mid-flare, and asks Nick the question the show keeps circling — how do you accept a limit when the person you’re disappointing is your kid? Our answer: reframing it. Nick names the 80-hour weeks he once called success and now calls a failure to listen to his own body, and Stephanie sharpens it into the episode’s best line: this is “needing an individual solution to a systemic problem.” Beth, waiting since February on a disability claim and heading to two assessment appointments, arrives at the same place from the other side — “I would rather have nothing than to struggle to keep everything.” That reframing is what makes the back half of our discussion cohere rather than veer — because when the conversation turns to an Omaha school district issuing shock gloves to safety officers, and to Arkansas’s Eli’s Law mandating audio recorders in locker rooms, the panel is still talking about the same thing: institutions that answer human need with control. Nick’s counter is a budget argument as much as a moral one — counselors, school psychologists, smaller classes. “It’s people, not surveillance.” Which means the self-judgment and the shock glove share a root: a society that treats a body’s limits as a problem to be disciplined. Disclaimer: Chronically Illing Out is a podcast and weekly roundtable discussion that provides a safe space for real chronic illness and mental health conversations—by people with lived experience. We are not trained professionals—and we do not claim to be—rather, we discuss our stories and current events to build community and solidarity. Know that you are not alone—and if you are in crisis, call/text 988. Actions You Can Take Get your Sick of this Shit merch! * Check out the Sick of this Shop! Join the efforts to unmask law enforcement and de-flock the States: * deflock.me Service members can get un-biased information on legal vs illegal orders: * Orders Project * Reach out on Signal: @TheOrdersProject.76 Learn empathy forward, human centered, experiment based Leadership & Growth Courses for Higher Ed & Non-Profit Professionals: * B. Cognition Labs Nick’s Notes I’m Nick Paro, and I’m sick of the shit going on. So, I’m using poetry, podcasting, and lives to discuss the intersections of chronic illness and mental wellbeing, masculinity, veteran’s issues, politics, and so much more. I am only able to have these conversations, bring visibility to my communities, and fill the void through your support — this is a publication where engagement is encouraged, creativity is a cornerstone, and transparency is key — please consider becoming a paid subscriber today and grow the community! Join the uncensored media at the 1A Collective Support as a paid subscriber however you can — to help get you started, here are a few discounted options for you * Forever at 50% off * Forever at 60% off For support, contact us at: info@sickofthisshitpublications.com Thank you Nieta Greene, Wendy Parker, Ms.Yuse, Dar 🇨🇦, KarenC-Book Collector📚⚖️🗽🗳️🧿♒️, and many others for tuning into my live video with Beth Cruz and Soso's World! Join me for my next live video in the app. This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit sickofthis.substack.com/subscribe

    Chronically Illing Out | E43 - Letting Go Of the Self Judgement
  4. Aug 12

    Chronically Illing Out | E42 - Starting the Week Off Strong

    Actions You Can Take * Say No to Crip Crow! Get your Sick of this Shit merch! * Check out the Sick of this Shop! Join the efforts to unmask law enforcement and de-flock the States: * deflock.me Service members can get un-biased information on legal vs illegal orders: * Orders Project * Reach out on Signal: @TheOrdersProject.76 Learn empathy forward, human centered, experiment based Leadership & Growth Courses for Higher Ed & Non-Profit Professionals: * B. Cognition Labs Nick’s Notes I’m Nick Paro, and I’m sick of the shit going on. So, I’m using poetry, podcasting, and lives to discuss the intersections of chronic illness and mental wellbeing, masculinity, veteran’s issues, politics, and so much more. I am only able to have these conversations, bring visibility to my communities, and fill the void through your support — this is a publication where engagement is encouraged, creativity is a cornerstone, and transparency is key — please consider becoming a paid subscriber today and grow the community! Join the uncensored media at the 1A Collective Support as a paid subscriber however you can — to help get you started, here are a few discounted options for you * Forever at 50% off * Forever at 60% off For support, contact us at: info@sickofthisshitpublications.com Thank you Environmental Coffeehouse, Noble Blend, julie elder, Laura Tompkins, Dana Britt, and many others for tuning into my live video with Beth Cruz and Soso's World! Join me for my next live video in the app. This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit sickofthis.substack.com/subscribe

    Chronically Illing Out | E42 - Starting the Week Off Strong
  5. Jul 27

    Chronically Illing Out | E41 - Starting the Week Mindfully

    Say No To Crip Crow “America has not fully fulfilled its commitment to guaranteeing equality for all since its founding nearly 250 years ago… Disability Community for Democracy will urge Congress to enact legislation that codifies the Olmstead decision, ensuring that states cannot compel the re-institutionalization of individuals with disabilities.” — Nieta Greene, CEO, from Disability Community for Democracy’s official statement on the Olmstead memo Take action today — and join the joint efforts of and for Democracy, Inc. — to codify, into law, the rights outlined in the 1999 Olmstead Decision. Use your voice — in which ever ways you can — to call, email, and fax your federal legislators using the support of our pre-written scripts and templates at: * BroadBanner’s Say No To Crip Crow action campaign: https://broadbanner.com/crip-crow/ Actions You Can Take Get your Sick of this Shit merch! * Check out the Sick of this Shop! Join the efforts to unmask law enforcement and de-flock the States: * deflock.me Service members can get un-biased information on legal vs illegal orders: * Orders Project * Reach out on Signal: @TheOrdersProject.76 Learn empathy forward, human centered, experiment based Leadership & Growth Courses for Higher Ed & Non-Profit Professionals: * B. Cognition Labs Nick’s Notes I’m Nick Paro, and I’m sick of the shit going on. So, I’m using poetry, podcasting, and lives to discuss the intersections of chronic illness and mental wellbeing, masculinity, veteran’s issues, politics, and so much more. I am only able to have these conversations, bring visibility to my communities, and fill the void through your support — this is a publication where engagement is encouraged, creativity is a cornerstone, and transparency is key — please consider becoming a paid subscriber today and grow the community! Join the uncensored media at the 1A Collective Support as a paid subscriber however you can — to help get you started, here are a few discounted options for you * Forever at 50% off * Forever at 60% off For support, contact us at: info@sickofthisshitpublications.com Thank you Jason P. Odell 📷, Jason Gael, Courtney M 🇨🇦🏳️‍🌈, Ms.Yuse, Patricia Wren, and many others for tuning into my live video with Beth Cruz! Join me for my next live video in the app. This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit sickofthis.substack.com/subscribe

  6. Jul 21

    Chronically Illing Out | E40 - Disability Pride with Daniel Carvajal

    Say No To Crip Crow “America has not fully fulfilled its commitment to guaranteeing equality for all since its founding nearly 250 years ago… Disability Community for Democracy will urge Congress to enact legislation that codifies the Olmstead decision, ensuring that states cannot compel the re-institutionalization of individuals with disabilities.” — Nieta Greene, CEO, from Disability Community for Democracy’s official statement on the Olmstead memo Take action today — and join the joint efforts of and for Democracy, Inc. — to codify, into law, the rights outlined in the 1999 Olmstead Decision. Use your voice — in which ever ways you can — to call, email, and fax your federal legislators using the support of our pre-written scripts and templates at: * BroadBanner’s Say No To Crip Crow action campaign: https://broadbanner.com/crip-crow/ Actions You Can Take * Say NO to Crip Crow by contacting your Representative and Senators to help codify the 1999 Olmstead decision into the Americans with Disabilities Act. Join the efforts to unmask law enforcement and de-flock the States: * deflock.me Service members can get un-biased information on legal vs illegal orders: * Orders Project * Reach out on Signal: @TheOrdersProject.76 Learn empathy forward, human centered, experiment based Leadership & Growth Courses for Higher Ed & Non-Profit Professionals: * B. Cognition Labs Get your Sick of this Shit merch! * Check out the Sick of this Shop! Nick’s Notes I’m Nick Paro, and I’m sick of the shit going on. So, I’m using poetry, podcasting, and lives to discuss the intersections of chronic illness and mental wellbeing, masculinity, veteran’s issues, politics, and so much more. I am only able to have these conversations, bring visibility to my communities, and fill the void through your support — this is a publication where engagement is encouraged, creativity is a cornerstone, and transparency is key — please consider becoming a paid subscriber today and grow the community! Join the uncensored media at the 1A Collective Support as a paid subscriber however you can — to help get you started, here are a few discounted options for you * Forever at 50% off * Forever at 60% off For support, contact us at: info@sickofthisshitpublications.com Thank you Jess Odell, Noble Blend, Bre Phillips, Dana Britt, Rose, and many others for tuning into my live video with Daniel Carvajal and Beth Cruz! Join me for my next live video in the app. This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit sickofthis.substack.com/subscribe

  7. Jul 13

    Chronically Illing Out | E39 - Monday Meanderings

    Ch-Illing In Review Today was a meandering Monday where we didn’t really have a focus going in — and we came out of it having a blast. We celebrate the amazing artistry of Cris Palomino with Lady Liberty showing off her Disability Pride. * Check out the new Disability Pride T-Shirt and Disability Pride Tote Bag at the Sick of this Shop. We follow that up with a great time showing off all sorts of Beth Cruz’s painted rocks. Which leads us into an unexpected conversation with the audience for ideas on creative spaces. Actions You Can Take * Say NO to Crip Crow by contacting your Representative and Senators to help codify the 1999 Olmstead decision into the Americans with Disabilities Act. Join the efforts to unmask law enforcement and de-flock the States: * deflock.me Service members can get un-biased information on legal vs illegal orders: * Orders Project * Reach out on Signal: @TheOrdersProject.76 Learn empathy forward, human centered, experiment based Leadership & Growth Courses for Higher Ed & Non-Profit Professionals: * B. Cognition Labs Get your Sick of this Shit merch! * Check out the Sick of this Shop! Nick’s Notes I’m Nick Paro, and I’m sick of the shit going on. So, I’m using poetry, podcasting, and lives to discuss the intersections of chronic illness and mental wellbeing, masculinity, veteran’s issues, politics, and so much more. I am only able to have these conversations, bring visibility to my communities, and fill the void through your support — this is a publication where engagement is encouraged, creativity is a cornerstone, and transparency is key — please consider becoming a paid subscriber today and grow the community! Join the uncensored media at the 1A Collective Support as a paid subscriber however you can — to help get you started, here are a few discounted options for you * Forever at 50% off * Forever at 60% off For support, contact us at: info@sickofthisshitpublications.com Thank you Nieta Greene, Soso's World, Amelia Hall, Jason Gael, Noble Blend, Cris Palomino, and many others for tuning into my live video with Stephanie G Wilson, PhD and Beth Cruz! Join me for my next live video in the app. This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit sickofthis.substack.com/subscribe

  8. Jul 6

    Chronically Illing Out | E38 - Disability Inclusion, Accessibility, and Living With Our Disabilities

    Ch-Illing In Review Today we welcome on Amelia Hall — creator of Trailblazing with CP and Accessibility Specialist — for a wonderful conversation into Amelia’s story and the role that CP (Cerebral Palsy) has played in her life, how it has helped to shape her views on accessibility and equity, and how she advocates for everyone’s rights. Take a moment to subscribe and follow Amelia Hall’s work — and help build this community where we focus on collaboration over competition. Disclaimer Chronically Illing Out is a podcast and weekly roundtable discussion that provides a safe space for real chronic illness and mental health conversations—by people with lived experience. We are not trained professionals—and we do not claim to be—rather, we discuss our stories and current events to build community and solidarity. Know that you are not alone—and if you are in crisis, call/text 988. Actions You Can Take * Say NO to Crip Crow by contacting your Representative and Senators to help codify the 1999 Olmstead decision into the Americans with Disabilities Act. * Check out the new: Sick of this Shop! * Check out the new network and affiliate calendar: BroadBanner Submit questions, feedback, and artwork for Notes of the Week with Nick and Walter: * Sick of this Shit Community Comment Form Call your public servants on important issues: * 5calls.org Join the efforts to unmask law enforcement and de-flock the States: * deflock.me Service members can get un-biased information on legal vs illegal orders: * Orders Project * Reach out on Signal: @TheOrdersProject.76 Learn empathy forward, human centered, experiment based Leadership & Growth Courses for Higher Ed & Non-Profit Professionals: * B. Cognition Labs Nick’s Notes I’m Nick Paro, and I’m sick of the shit going on. So, I’m using poetry, podcasting, and lives to discuss the intersections of chronic illness and mental wellbeing, masculinity, veteran’s issues, politics, and so much more. I am only able to have these conversations, bring visibility to my communities, and fill the void through your support — this is a publication where engagement is encouraged, creativity is a cornerstone, and transparency is key — please consider becoming a paid subscriber today and grow the community! Join the uncensored media at the 1A Collective Support as a paid subscriber however you can — to help get you started, here are a few discounted options for you * Forever at 50% off * Forever at 60% off For support, contact us at: info@sickofthisshitpublications.com Thank you Nieta Greene, Farmers AGAINST trump., julie elder, Ms.Yuse, Cathy Stein, and many others for tuning into my live video with Stephanie G Wilson, PhD, Beth Cruz, and Amelia Hall! Join me for my next live video in the app. This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit sickofthis.substack.com/subscribe

    Chronically Illing Out | E38 - Disability Inclusion, Accessibility, and Living With Our Disabilities

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Welcome to Ch-Illing Out with Nick Paro, Beth Cruz, Soso, and Steph Wilson where we take time to focus on living with chronic illnesses. This is a community where chronic conditions are seen, heard, and valued. sickofthis.substack.com

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