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. 2d ago

    Chronically Illing Out | E48 - Here Comes a Week

    Chronic Illness In Review Nick and Soso held the table on their own this week, with Steph and Beth out, and opened with a line that set the tone: every week is a week right now. Nick admitted he has been quieter lately, worn down by illness moving through his extended family at the same time. Soso came in rested for once, after a new treatment finally gave her a full night’s sleep and the energy to host family for a birthday dinner. From there the conversation moved from weather and mobility to a veteran-led welcome home for sailors and Marines, and on to what it costs service members to refuse a war. The thread tying it together is the one this show always comes back to: you pace yourself, and you do not do it alone. Nick named the drain that comes with caring for sick family while living with chronic illness yourself. One person being sick is manageable, he said, but three or four at once takes a mental toll he does not always handle well. Soso pointed out how hard it is to find any space that is not about medical talk when illness fills both your own life and your family’s. Nick kept the details vague to protect family privacy, and he treated rest as part of the plan rather than a failure: after a full day with family, they took the next day to do nothing and recover. That is pacing in practice, and this episode shows it without apology. A tangent about false fall turned into a real conversation about ice, age, and mobility. Nick and Soso both noted winters bringing more ice and less snow, and Soso stressed how dangerous that is for anyone with a mobility limitation, from her cousin who uses a wheelchair to her grandmother who broke her hip in a fall. Audience member Courtney stole the segment with her homemade shoe spikes of duct tape and screws for her stepdad, which Nick called the most millennial thing he has ever heard. Nick also explained why his family moved closer to relatives and flatter ground: when you are older and you fall, you need people nearby. Soso added the worry of having aging family far away, and both landed on the value of having several generations close to each other. Nick then promoted Valor Media Network’s welcome home mission for the sailors and Marines aboard the USS Abraham Lincoln, and played a video from Valor president Christopher Goldsmith. The goal is care packages for at least 1,000 service members, with a focus on junior single sailors and Marines who will not have family waiting at the dock. Nick listed what goes in them: hygiene, menstrual, and sexual health products, gift cards for a first meal home, a copy of War Is a Racket, voter registration information, and guidance on how to tell their stories safely and legally. His point is that service members are not the ones who make policy, and they need to know the public sees them as people. Donations go through valormedianetwork.com, and Nick says they are tax-deductible. The back half turned to conscientious objection. Nick argued that service members can lawfully object to deployment in a war of choice. He cited an article he had seen, without naming the outlet, reporting a record number of objectors. He did not soften the cost: objecting usually ends a career, taking with it a steady income, health insurance, housing allowance, and education benefits. “If you’re unwilling to give up your own career, don’t ask other people to do it,” he said. Soso brought a Canadian view, separating ordinary Americans from the people in power, and Nick framed international pressure, including a reported UN review of U.S. boat strikes, as proof that Americans pushing back are not alone. Soso brought it back to the chronically ill community: staying involved while your body sets the limits means learning to protect your baseline. “Just rest or just put it in a little drawer and take care of your body first,” she said, and then come back when you have capacity. The show closed with Beth’s guided meditation, Take a Hike, a slow walk through a misty forest that gave everyone room to breathe. Nick ended with a call for more disability and chronic illness community, and for everyone to keep showing up as themselves. We’re done being sick of this shit here, he said. Now we’re doing this shit. Sources & References * Valor Media Network (welcome home mission for USS Abraham Lincoln sailors and Marines, as described on the show) * War Is a Racket, by Smedley D. Butler (Nick noted Christopher Goldsmith helped write the foreword; no link given on the show) 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 Amelia Hall, MSW, CPACC, Jai Porter 🇨🇦, Brad, Portable Vibes, Noble Blend, and many others for tuning into my live video with 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 | E48 - Here Comes a Week
  2. Sep 16

    Chronically Illing Out | E47 - Recouping and Starting Our Week

    Summary E47 opens with four people admitting they are already tired on a Monday, and that admission turns out to be the episode’s argument. Steph names the mechanism early — the morning reminded her “that I need to focus on myself if I want to really stay regulated and sane and not inhale everybody else’s anxiety” — and the hour keeps testing it. Soso walks through the bargain chronic illness forces around medication, describing how perimenopause has worsened her flares while a parent’s voice in her head still says don’t take too many pills; Beth tallies the cost of one beautiful afternoon rock foraging on the Carbon River and says she’d do it again. The political turn — Musk, election manipulation, and Nick’s argument that the tech world and the evangelical world each “cultified” themselves and then found each other by convenience — lands as the same problem at civic scale: finite energy, unlimited demand. Steph closes by borrowing her therapist’s last question, “What are you going to do for yourself this week?”, and the answers come back small and concrete: a swim, painted rocks hidden for Halloween kids, a karaoke night, a walk by the ocean. That pivot is the method the show keeps proving out — name the weight, then refuse to end there. References * Motorhead - Orgasmatron Lyrics * Motorhead - Orgasmatron Video * Steppenwolf - Monster Video * U2 - American Obituary Video Thank you Amelia Hall, MSW, CPACC, Noble Blend, Mike Harkreader, Dar 🇨🇦, MJ Cooke, 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. Say No To Crip Crow Take action today for Advocacy Month: https://tinyurl.com/saynotocripcrowoctadvocacy “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 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: * Learn about the Lois Curtis and Elaine Wilson Integration Act 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 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

  3. 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
  4. 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
  5. 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
  6. 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
  7. 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

  8. 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

About

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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