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Step Therapy Sucks, and I’m Tired of Being Quiet About it (AWAP Wednesday)

Posted by on Apr 20, 2016 in activism, Affordable Care Act, coping, depression, fears, featured, Health Care Reform, pain, ranting, resilience, suicide | 22 comments

This week’s video is different. I’m sharing a personal story about something I’ve been struggling with this year—Step Therapy—in hopes that you’ll relate… and that you’ll join me in fighting this awful practice: Step Therapy. So it’s a longer video, a more passionate stance, and a request. Please take some time to watch it all the way through… it comes from deep in my heart. *AWAP = As Well As Possible Now it’s your turn: Have you gone through Step Therapy or something similar? How did you fight back? What worked, and what didn’t? I wanna know! Join the conversation in the comments below, share your experience and ask for advice from our community. Want to watch more videos like this? Check out our AWAP Wednesday video playlist, which has more than 10 hours of guidance, advice, and bloopers. Is there a question I can answer for YOU? Add it to the comments below, or shoot me an email. Until we meet again: Be AWAP! Smooches! Rough transcript: Hi! I’m Jenni Prokopy of ChronicBabe.com and today is AWAP Wednesday (that stands for As Well As Possible). Each week, I offer you my personal favorite tips and techniques to help you craft an incredible life beyond illness. Yes! I know you can. Subscribe to the ChronicBabe YouTube channel today to make sure you never miss another video, OK? Today’s AWAP Wednesday is a little different, my friends. I have a personal story to tell you, and a request I hope you’ll honor. Here we go… [Bumper] The past four months have been absolutely hellish here at ChronicBabe HQ, and I want to tell you why. I’ve been pretty quiet about the details, but today I want to explain it all to you—because I bet many of you are going through the same challenges. If my story helps you feel like you’re not alone—and if my outrage helps motivate you or anyone you know to advocate for folks like us—then this video could possibly change lives. I’ve been taking an FDA-approved fibromyalgia medication for many, many years, with great success. The change it made in my life was enormous. You know me as someone who, despite fibromyalgia and a host of other chronic conditions, is able to run her own business; maintain an active social life; be part of a committed romantic relationship; volunteer for both local efforts like my community garden, and national efforts like patient advocacy; and much more. Right? That’s the Jenni you know: spunky, lively, upbeat, even in the face of deep struggle. [Transition] This year, my new insurer took away my fibromyalgia medication through a process called Step Therapy. (link to us pain doc) For those who don’t know, Step Therapy is cost-saving policy...

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How to Respond to People Who Offer Cures for Chronic Illness (AWAP Wednesday)

Posted by on Nov 18, 2015 in ChronicBabe Basics, coping, featured, holidays, ranting, relationships | 20 comments

Today’s AWAP Wednesday video is all about what to do when someone offers you an unsolicited cure for your chronic illness. I KNOW you get these all the time—I sure do—and it’s a pickle to figure out how to respond with grace and calm when you’re all riled up inside! So I’ve come up with a few ideas for you that just might help you have easier conversations. Watch today’s video, in which I share some of my favorite conversation strategies for cure-offering busy bodies: *AWAP = As Well As Possible Now it’s your turn: How do YOU respond when someone tries to push a cure on you? What has worked, and what hasn’t? I wanna know! Join the conversation in the comments below, share your experience and ask for advice from our community. Want to watch more videos like this? Check out our AWAP Wednesday video playlist, which has almost nine hours of guidance, advice, and bloopers. Is there a question I can answer for YOU? Add it to the comments below, or shoot me an email. Until we meet again: Be AWAP! Smooches! (Rough) transcript: Sitting under a special tree, which is home to angels who will bless me and cure me. Drinking tart cherry juice. Taking handfuls of supplements every few hours. Seeing a particular specialist who has a secret cure. These are all real things people have suggested to me to get rid of fibromyalgia. Grrrr… I KNOW you know what I’m talking about. Today, I’m talking about how to talk to people who offer you cures. [Transition] Hi! I’m Jenni Prokopy of ChronicBabe.com and today is AWAP Wednesday (that stands for As Well As Possible). Each week, I offer you my favorite tips and techniques to help you craft an incredible life beyond illness. Yes! I know you can. Subscribe to the ChronicBabe YouTube channel today to make sure you never miss another video, OK? [Transition] It’s rough when someone offers a cure, right? Because many of us WISH for cures. We crave a fix. We would give almost anything to be well again. So when someone offers us an unsolicited cure, it tugs on our heart strings for a moment. We want it to be real. And then we feel the inevitable crushing blow of its non-realness. It’s almost like we get sick all over again, each time. It can feel like a little defeat. And then we’re stuck with responding to this unsolicited cure, which is a quandary. [Transition] Consider the Source. It’s one thing for one of our healthcare providers to suggest a new treatment, or for a well-meaning friend to forward a link to an article about new research. It’s a whole other thing for strangers to offer us “cures.”...

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Meet My Evil Twin/Why Being Bad Can Be Good (AWAP Wednesday)

Posted by on Sep 30, 2015 in acceptance, ChronicBabe Basics, coping, featured, ranting | 6 comments

Today’s AWAP Wednesday video is about the benefit of being bad. Not being a bad person, or being a Debbie Downer all the time… but being just a little bit bad. Venting. Getting negativity off your chest. You can’t hold it in forever! Watch today’s video, in which I share some of my thoughts about venting and complaining… and catch me in a wicked black wig! *AWAP = As Well As Possible Now it’s your turn: How do you get negative stuff off your chest, without being a negative person all the time? I wanna know! Join the conversation in the comments below, share your experience and ask for advice from our community. Want to watch more videos like this? Check out our AWAP Wednesday video playlist, which has more than eight hours of guidance, advice, and bloopers. Is there a question I can answer for YOU? Add it to the comments below, or shoot me an email. Until we meet again: Be AWAP! Smooches! (Rough) transcript: Like what I’ve done with my hair? Today I’m wearing my black wig, to symbolize my inner dark side, my evil twin. Because today, I’m gonna be BAD, dahhhhling. Hi! I’m Jenni Prokopy of ChronicBabe.com and today is AWAP Wednesday (that stands for As Well As Possible). Each week, I offer you my favorite tips and techniques to help you craft an incredible life beyond illness. Yes! I know you can. Subscribe to the ChronicBabe YouTube channel today to make sure you never miss another video, OK? Positivity Rules, Right? Y’all know I’m a person who focuses on positivity—not the Pollyanna variety (denial sucks!)—but I emphasize looking for the silver lining. But today I’m letting my bad self out, my evil twin—the girl who vents. The girl who complains. The girl who whines a leeeeetle teeny tiny bit. My bad girl. Because babes, yesterday was ROUGH. Some Days Just Suck and There’s No Getting Around It Yesterday sucked. Sucked! I felt awful. Not only did I have all my usual fibromyalgia symptoms, but I also had a bunch of OTHER symptoms, too. Ones that wouldn’t let me leave the house. I was miserable. I got almost work done. And on top of it, our internet died, and I spent an hour doing tech support. GRRRRRRRRR! Let Yourself Get a Little Negative On days like yesterday, positivity just doesn’t cut it. Sometimes we have to let ourselves get just a little bit negative. I don’t mean whine about everything—I mean, allow yourself to complain a bit about the real crap that is going down. On our worst days, that’s a time for journaling and letting it all out. It’s a time to turn up your favorite bad girl tunes and singing at the top of...

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AWAP Wednesday: Let’s Get Real.

Posted by on Jul 8, 2015 in acceptance, coping, featured, pain, ranting, resilience | 42 comments

Today’s AWAP Wednesday video is a moment for us to connect and commiserate about the realities of life with chronic illness… and acute illness and injury! I hope you enjoy a moment of REALNESS from your humble Editrix Jenni… it was a but emotional but I believe in honesty and openness. Watch today’s video, in which I explain what’s been going on at ChronicBabe HQ the past few weeks: *AWAP = As Well As Possible Now it’s your turn: Have any good fart jokes to cheer me up? How are YOU managing in spite of setbacks? I’m ready to hear it ALL. Join the conversation in the comments below, share your experience and ask for advice from our community. Want to watch more videos like this? Check out our AWAP Wednesday video playlist, which has almost seven hours of guidance, advice, and bloopers. Is there a question I can answer for YOU? Add it to the comments below, or shoot me an email. Until we meet again: Be AWAP!...

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AWAP Wednesday: On Haters and Advocacy

Posted by on Jun 17, 2015 in activism, ChronicBabe Basics, featured, ranting, relationships, self care | 42 comments

*AWAP = As Well As Possible Today’s AWAP Wednesday post is about the haters. You know the ones: The friend who gives you side-eye when you start talking about your journaling process and how it helps you cope with the unknown elements of life with chronic illness. The co-worker who periodically asks why you get to come in late on Wednesdays, even when he knows you have a standing doctor appointment early Wednesday mornings… and that you always stay late to make up for the time. The neighbor who glares when you park in your handicapped spot, most likely because you don’t use an assistive device—even though you’ve explained that you have that spot because of invisible illness. (And: the random dude in the big-box store parking lot who glares or even shouts at you for parking in a handicapped spot.) The acquaintance who, at a party, tries to explain to you and everyone in earshot that she read something online that discredits the existence of your chronic illness. The stranger who writes you nasty blog post comments because you’re just too darn happy in spite of illness. (Yea, I see you, haters!) We all have haters in our lives. Now, they probably don’t actually hate us… but they sure aren’t showing us any love, either. I have two perspectives for you to consider regarding haters: 1. They’re hatin’ because of their own insecurity, or stress, or history with illness or disability, or something else that’s ALL THEM. It doesn’t get more complicated than that. If someone knows you even the smallest bit and chooses to hate on you for doing your best even if you’re sick, well, something is wrong with them. They may be under a great deal of stress and it pains them to see you excel; they might have struggled with illness or injury at another time and resent how well you’re handling your own experience. They might have a family member with a similar illness who isn’t being very ChronicBabe-like, and they’re projecting that person’s experience onto you. They may see you and fear that they themselves will become ill, and it scares them. There are innumerable reasons why someone is a hater. And all those reasons most likely don’t have a thing to do with you—and instead have everything to do with the hater’s experience. This is where I give a shout-out do Don Miguel Ruiz, author of The Four Agreements. (I consider this book required ChronicBabe reading.) One of the four is this: “Don’t take anything personally.” Easier said than done, I know! But it gets easier with practice. When you move through life with the knowledge that most people’s actions have nothing to do with you and...

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AWAP Wednesday: Sometimes, You Need to Shut Up.

Posted by on May 6, 2015 in activism, featured, ranting, relationships | 60 comments

Today’s AWAP Wednesday video is not based on a question I received. It’s based on my reaction to spending so much time in the chronic illness/chronic pain community. We like to tell our stories. A lot. And I love that, most of the time. Our stories are powerful: They help us connect with others, they help us get something off our chests, they help us turn friends and strangers into advocates. That is… if we are thoughtful about when and how we tell our stories. On the flip side, when we tell the same agonizing story over and over about our chronic illness/chronic pain experience, it’s exhausting and non-productive for everyone—including ourselves. So today, in the most loving way possible, I’m asking you to shut up. (And I’ll try to heed my own advice, too!) Watch today’s video, in which I explain why we *sometimes* must simply shut up: *AWAP = As Well As Possible Now it’s your turn: Have you been thoughtful about how you tell your story, and to whom? Do you think I’m a jerk for suggesting we all need to shut up sometimes? I want to know! Join the conversation in the comments below, and share your experience. Want to watch more videos like this? Check out our AWAP Wednesday video playlist, which has more than six hours of guidance, advice, and bloopers. Is there a question I can answer for YOU? Add it to the comments below, or shoot me an email. Until we meet again: Be AWAP! Smooches! (Rough) Transcript: Today’s message is pretty simple, and pretty blunt. So I want you to hear it from me knowing I’m sending it to you with the most humility, and irreverence, and love, and joy, and compassion, and loving-kindness that I can. So with that being said, here is the theme for today’s video: Shut up. Sometimes, we all just need to shut up. I hope you’ll understand I say that to you with a lot of care and humor, but for real: sometimes we need to shut up. There are a couple reasons why I think those of us with chronic illness or chronic pain sometimes need to shut up. Reason #1: We’re telling ourselves the same bummer story over and over Sometimes we talk too much, in our brains, to ourselves, all the time, about our illness. And about how much we’re suffering and about how hard things are. Sometimes we’re repeating this tape over and over and over again, and drilling in HOW HARD IT IS to live with chronic illness… and that is not healthy. If we spend all our time focusing on the negative, we are going to feel like crap. We’re going to feel EVEN WORSE than we...

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