Chronic but iconic: how to live well in spite of it all

  • “Renegades”: The PBS Show About Historical Figures With Disabilities You Need to See

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    I’ve been in constant pain since my teens and for so long, I have felt doubly unseen and unheard in the larger narrative of history and culture. So when I got the opportunity recently to interview the host & crew of Renegades, the groundbreaking PBS show about lesser-known historical figures with disabilities in American history, I was thrilled. Finally, a show that doesn’t just tokenize disability but centers it, celebrates it, and demands that we recognize it as integral to our shared history.

    “Disability has always been part of the U.S. historical landscape: it’s one of the few identities anyone can acquire at any time. This series is about putting disability back into the mainstream narrative, where it’s always belonged.”

    Charlotte Mangin, series executive producer
    On a purple background, an old-timey TV with rabbit ears has text appearing reading "what star trek got wrong about geordi's disabilities, janetjay.com"
    At least there was Star Trek, problematic though it can occasionally be

    At base, Renegades tells the stories of extraordinary individuals who shaped the world in ways I’d never known. These are the stories I wish I had growing up, stories that validate the truth that disability isn’t a limitation: it’s part of the fabric of humanity.

    The importance of shows like Renegades, both in front of and behind the camera

    Each of these trailblazers hails from a different field and deals with a different disability, but they are connected by their stories, successes and demands to be heard.

    “We want this series to leave you inspired, maybe even a little mad – just enough to make you want to do something about it,” said Cashmere Jasmine, director and producer of the Celestine Tate Harrington episode. “These stories are American stories, not just for the disability community. It’s time they were recognized as part of our shared history.”

    What’s more, the series comes from a host, producer, production team and other media pros that have disabilities themselves, bringing unique and invaluable perspectives to the issue. In every way, Renegades centers on how best to tell the stories of each of these little-known historical figure with disabilities– and how to make those stories more widely accessible to those with and without disabilities.

    “Disability has always been part of the U.S. historical landscape: it’s one of the few identities anyone can acquire at any time,” said Charlotte Mangin, executive producer of the series. (That’s a line I use often, actually. Disability: it’s the only minority you can join!) She finished: “This series is about putting disability back into the mainstream narrative, where it’s always belonged.”

    Check out the preview below! Then scroll down for more about the show, the featured historical figures with disabilities, and the people with disabilities involved in making the show, both in front of and behind the camera.

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    Beyond the Pain Scale: A Patient’s Guide to How Nurses Can Improve Pain Management & Combat Stigma

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    Last weekend (October 2024) I had the incredible opportunity to speak at the 2024 American Society of Pain Medicine Nursing conference about the importance of communication between patients and their medical providers. I’m no medical pro, but as a chronic pain patient for over two decades, I’ve experienced firsthand the transformative power of compassionate, patient-centered nursing care and how much nurses can improve pain management treatment. I’ve also felt the weight of stigma, disbelief and “not my problem” that too often accompanies a chronic pain diagnosis.

    Don’t worry, I won’t inflict the whole hour-long Q&A on you. But here’s a little bit about what I’ve gone through, what I’ve learned, and some guidance on how nurses and other medical professionals can improve pain management, making a profound difference in the lives of patients with chronic pain.

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    Can you see pain?

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    Different ways to see pain, even when your condition is invisible

    Can you see pain?

    It’s a tricky question! Pain is such a complex and subjective experience, and the word “pain” covers a whole host of very different experiences. It gets even more complicated when you’re talking about chronic pain or illness. It’s not like a bruise or a broken bone that you can easily point to and say, “Yep, that’s where and why it hurts!”

    That doesn’t make the pain any less real, though.

    Pain doesn’t always present itself visibly, and some individuals may mask their discomfort due to social expectations or personal stoicism. This is where other perspectives become crucial in developing a fuller understanding of how to see pain.

    Let’s look at the different ways to see not just acute pain but chronic pain, invisible disabilities or even mental health struggles. You can see pain through a person’s actions and affect, by representing that pain in art, or by using technology to visualize what’s happening to a body in pain.

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  • The Best Type of Heat To Help You Feel Better

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    Types of heat & how each helps pain differently

    Living with chronic pain can feel like an endless battle, but sometimes, the simplest solutions can offer the most profound relief. Heat therapy may be a time-honored tradition in pain management, but your options have evolved far beyond the humble hot water bottle. Let’s look at each type of heat and how it might or might not help your pain condition.

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  • Migraine Relief W/o Meds: A Huge List of Stuff to Help Your Headache

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    The ultimate guide to stuff that might make migraines more manageable

    Stuff to help your migraine… that you can get over the counter?! Yeeeah, seems like a “I’ll believe it when I see(/feel) it” situation. For my entire life I’ve dealt with migraine disease, tension headaches, and sinus headaches so bad I had one surgery and need another. I have tried nearly every treatment or thing there is to help my migraines and other headaches, and I will admit, most of what I’ve tried didn’t do jack shit. (Other than deplete my wallet.)

    On a light blue background, "so much more than a headache" with a clipart of a head with a brain and a red arrow pointing to the brain, speech bubble says "what's your migraine routine?" janetjay.com
    Check out my migraine routine!

    Despite the slog, I have figured out a few things that work for me (like my ever-evolving migraine routine!) and I wanted to put together a master list of items that might make you feel better. I asked my network, my private pain group and my and social media followers what they rely on. Then I used an AI to drill through over a decade of forum posts to see what’s been recommended over and over again.

    It’s a big list and not everything is going to work for everyone. But migraines are miserable, and the worse the pain, the more it seems worthwhile to try everything you can.

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    Exactly what to say to your doctor to get refills on the meds you need

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    Free step-by-step instructions with the exact wording to communicate with your doctor & get that crucial refill ASAP

    You need an urgent refill on your pain pills, brain pills or another controlled med ASAP. How do you make your doc understand & act? How do you play middleman with your pharmacy? How do you keep track of it all? And exactly what do you say to make this magic happen?!?! Don’t worry! This post explains your options for how to get that urgent refill. I’ll even throw in a printable script (no, not THAT kind of script) with effective voicemail messages for your medical team that you can customize with your own info.

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    For National Mental Health Month, 6 beautiful poems about mental health & chronic pain– & despite them!

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    Chronic pain & mental health poems that are wise, not sappy

    Poems about mental health, chronic pain or other invisible disabilities, just like quotes on the subject, tend to be sappy as hell (except those quote pages I put together, of course). And that is extremely not my jam. But something doesn’t have to be about a specific condition to touch a chord re: the boredom, the fight, the loneliness… the whole slog of it all.

    It’s National Mental Health Awareness Month over here in the US and damn, we really do not talk enough about the interrelationship between pain and your brain. While your pain is absolutely not “all in your head,” your thought processes can and do affect so many things.

    So these are 6 of my favorite poems about life with mental health issues and/or chronic pain– & despite them! Some inspire me, some speak to the pain I’ve endured, and some just make me feel less alone.

    This year’s poems are…

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    Is your room causing your insomnia? W/ a free printable to find out!

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    Using your five senses to figure out if your room is causing your sleeplessness

    If you’re someone who beds down at night only to stare at the wall, have you ever considered whether your room could be contributing to your insomnia? Not being able to sleep sucks, and the combo of chronic pain and insomnia (or fibromyalgia and insomnia, or ADHD and insomnia…) is even worse. The pain cycle (see infographic!) is a hell of a companion to drag along: the more you hurt, the less you sleep, which makes you hurt more, which makes you sleep less. Rinse & repeat.

    But you have options! I’ve written about trouble sleeping with chronic pain before, but in the quest for a good night’s sleep, we often overlook the most obvious culprit: our bedroom environment.

    Believe it or not, the setup and condition of your room can significantly impact your sleep quality. If you find yourself tossing and turning night after night, it might be time to examine these factors more closely. Here are some critical things to consider about whether the room you sleep in could be contributing to your insomnia– and a free printable with important questions to ask about your sleep space.

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    Navigating Relationships with Chronic Pain with Unity & Partnership

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    Despite whatever conditions are in play, there are ways to find and build a healthy romantic partnership where you thrive as a team. Here’s how!

    Building a healthy relationship despite chronic pain is a complex dance, one that requires grace, patience, and of course love. Whether it’s you or your partner who’s in this continuous battle, the experience affects your relationship. But here’s what I’ve learned—both from personal experience and from others walking this path: it’s not just about managing pain, it’s about managing understanding, and support in ways that make your love and relationship stronger.

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  • 10 Quotes About Chronic Pain & Joy to Motivate Your New Year & Beyond

    On a grey background of squares, text reads Top 10 inspirational quotes about chronic pain and joy to motivate you through the new year and beyond, janetjay.com

    Inspirational quotes about chronic pain that actually resonate with what we’re going through can be hard as hell to find. Living with constant pain or chronic illness is a tough slog, rougher than “able-bodied” people can ever know. Finding the joy in a life filled with pain is more difficult for us, but it’s also more important.

    That’s why for the new year I put together my top 10 favorite inspirational quotes about chronic pain and joy. I find value, comfort and motivation in these wise sayings about the change, growth, and happiness in life. And those of us with chronic pain need to seek out the joy however we can.

    Yes, we’re in pain, yes, it changed the foundation of our lives, and yes, it can be boring as hell. That doesn’t mean there isn’t joy and fulfillment out there too! But you have to get your head in the right place to find it, and you have to do the work.

    Janet Jay

    All we get is one life. We may not get to choose our bodies and how they break down on us, but we can make the best of what we have, strive to be more than we are, and appreciate the glimmers of joy every day.

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  • Gifts for People With ADHD: Hugely Helpful Last Minute Life Hacks

    Red sign saying "last minute" beside text reading "life hack gifts for people with adhd" above an illustration of hands with boxing gloves holding up a wrapped prsent in front of a background of other presents, janetjay.com. Art by storyset.

    Gifts for people with ADHD can be hard to figure out! So consider items that can truly make a difference in their day-to-day lives. Living with ADHD often means coping with forgetfulness, limited focus, time blindness, and organizational challenges on a daily basis. Thoughtful items like these can incredibly useful for managing this condition by improving productivity, managing symptoms, and restoring a sense of control. Whether it’s morning wake up lamps, noise-cancelling headphones, or magnetic frame hangers that let you change the look of your walls on a whim, these “life hack” gifts can assist with time management, memory, attention regulation, and reducing distractions along with helping establish the routines, reminders, and focus ADHD brains need.

    The actual presents for your loved ones with ADHD are important, but more important by far is the care and consideration that you show in choosing them. They show that you listen when your loved one describes their challenges and that you truly care about helping.

    The actual presents for your loved ones with ADHD are important, but more important by far is the care and consideration that you show in choosing them. They show that you listen when your loved one describes their challenges and that you truly care about helping.

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  • Surprise friends w/ The Most Useful Gifts For People With Fibromyalgia This Holiday Season

    Text reads "this holiday season, surprise your friends with the most useful gifts for people with fibromyalgia," above a smartphone wearing a santa hat and surrounded by snowflakes, smartphone screen reads "2023 gift guide, janetjay.com"

    Gifts for people with fibromyalgia aren’t hard to come up with: you just have to put yourself in their shoes. (Hopefully, cute ones.) Though fibro is an invisible disability, that doesn’t make its effects, like chronic widespread pain, fatigue, sleep issues, and sensitivity to movement and environmental stimuli, any less real. 

    If you had those limitations, what day-to-day tasks might be challenging to get through or what self-care strategies might help? Think about the particular person you’re shopping for: what do they struggle with, and how could you help?

    A well-thought-out gift shows care and compassion for your loved one and their limitations. But above all, useful gadgets and relaxation-promoting treats given as gifts for people with fibromyalgia help remind them of the greatest present of all: that you listen and that you care.

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Hopefully this site will help you avoid some of the BS I’ve experienced over the last 20 years seeking treatment for my chronic pain, invisible illnesses & mental health challenges. Maybe it’ll even help you think about disability in a new way! But at the very least, I hope you learn something, and I hope it helps you feel less alone.

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