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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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Travel Tips for Folks with Chronic Illness and Pain (AWAP Wednesday)

Posted by on Apr 7, 2016 in activism, ChronicBabe Basics, coping, featured, pain, self care, Work | 19 comments

I recently traveled to New York for a U.S. Pain Foundation event, and it got me thinking: what are some of my colleagues’ and friends’ favorite travel tips for people with chronic illness and chronic pain? This week’s video is PACKED with tips—I count more than 20—and I’m really excited to share it with you today. It’s longer than usual, but I hope you find it worth your time. *AWAP = As Well As Possible Now it’s your turn: What’s YOUR favorite travel tips for folks in our community? 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! Transcript, provided by one of our awesome readers: Jenni Prokopy- “Hey everybody. It’s Jenni Prokopy from chronicbabe.com and today is another AWAP Wednesday. If you haven’t watched any of these before, a quick refresher. AWAP stands for As Well As Possible. And in all things, that what I wish for you. That you live your life as well as possible. No matter how much you have to deal with chronic illness or chronic pain, I think you can do it. I’m working on doing it. Yes! I know that you can. So, I’m coming to you today from a hotel in Westchester, New York, because I’m here for one of our, um, US Pain Foundation Take Control of Your Pain events. I’m wearing my US Pain Foundation shirt, which I blinged out because it’s a polo shirt, and I don’t wear those. So *laughs* I had to make it my own and kinda be silly with it. You know how I roll. So, I wanted to share with you a few of my favorite travel tips, and I”m gonna try to get some from some of my colleagues because they are seasoned chronic pain/chronic illness travelers. So, here we go.” *scene cut* Jenni- “So I know it’s a little bit of wobbly cam today because I’m doing this on the fly. But I hope you think it’s worth it.” *scene cut* Jenni – “Okay here I am with Lori Monarca. She runs the US Pain Foundation office, she is amazeballs. She’s got a tip for you.” Lori Monarca- “Um when traveling I try to leave a little bit earlier, so before an event I have time to relax and unwind.” Jenni- “I love it. Thanks, lori!” *scene cut* Jenni- “One of my first tips is always...

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Listen Now: Jenni on Aches & Gains Radio Show w/ Dr. Paul Christo

Posted by on Oct 5, 2015 in activism, announcements, coping, featured | 0 comments

Howdy, all my fellow ChronicBabes and ChronicDudes! I’m so bowled over today. This weekend the first part of my interview with Dr. Paul Christo aired on his Sirius XM radio show, Aches & Gains… but I don’t have Sirius. So I had to wait until today to listen… and I am so humbled. Dr. Christo really made me sound great—it’s like he has a magic “fibro fog” filter in his editing booth. I need one of those! Our interview covers so many things, and that’s just in part 1: support groups and their value; the importance of a multi-disciplinary approach to pain and chronic illness management; suicide and its prevalence in our community (wow, did it get personal on that topic); sacrifices we make when we have illness and pain; my favorite support organizations; and much, much more. You can listen now to the recording of part 1, hosted at Dr. Christo’s excellent site (he also offers tons of other resources, celebrity interviews, and a backlog of his show episodes). And tune in next week, when part 2 airs at 5pm EST on Saturday, October 10. If you miss the live show, you can find the recording a few days later at his site, or come here; I’ll post that link, too. Most importantly, let me know what you think of the interview! I would love to hear your thoughts and experiences, so jump into the comments below and share your story. Thanks! UPDATED: Part 2! The link to part 2 of my interview with Dr. Paul Christo is now live, and I am so honored and grateful to have had the opportunity to speak with him....

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We Get By With a Little Help From Our Friends (AWAP Wednesday) – All About Chronic Illness Advocacy

Posted by on Aug 19, 2015 in activism, featured, pain | 15 comments

Last week, I had the enormous pleasure of attending the U.S. Pain Foundation‘s annual pain ambassador summit and gala. It was positively awesome. Spending a couple days surrounded by people in pain and living with chronic illness might not sound like fun to some folks, but for me, it was so fun, and so many other things: challenging, comforting, hilarious, insightful, rewarding… just to name a few. So today, AWAP Wednesday*, I want to share a few things about my favorite patient-focused advocacy organization, and encourage you to find your tribe, too. *AWAP = As Well As Possible Advocacy efforts make a huge difference Among our group of state pain ambassadors and other advocates, we have folks who are unemployed, on permanent disability. We have folks who can barely make it through the day without medical intervention. We have folks who are missing limbs, who use assistive devices, who have cognitive difficulties related to stroke. We’re kind of a mess. But we’re a beautiful mess. These fantastic people work incredibly hard to use the energy and resources they DO have to make a real difference in peoples’ lives. They take their advocacy and service work seriously, and they help people across the country get the pain treatment they need and deserve… every dang day. It’s so empowering to spend a couple days with them and learn how they work, what motivates them, and how they find workarounds to maximize their results despite health-related limitations. They get it done, people. Sometimes we need a good laugh When I spend time with my tribe of pain advocates, it’s not all serious chat about how we’re going to sway lawmakers to take our side or how we’ll teach people to take control of their lives. We also have a helluva good time. If you can’t make fun of yourself, who CAN you make fun of? And if you can’t laugh about life with chronic pain and illness, I believe you’re kind of doomed to be miserable. The company of my friends keeps that from happening. They keep be laughing, silly and joyous no matter how much I’m hurting. And they’re pretty fabulous dancers. It’s great to learn together One of the most memorable moments of the weekend for me was teaching a workshop on how to tell your personal pain story in a compelling, ally-winning way. It was a chance to get to know my fellow advocates, and teach them how to be stronger storytellers. When we learn together, we’re not just exploring techniques for advocacy; we’re also learning from each others’ experiences. I don’t know what it’s like to have reflex sympathetic dystrophy, for example, but now I have something of a better...

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AWAP Wednesday: What Will You Bling? Contest Winners!

Posted by on Jul 15, 2015 in activism, announcements, coping, Creativity, featured, inspiration | 1 comment

It’s AWAP* Wednesday, and today I have a very special edition of our weekly conversation about being as well as possible in spite of illness! A couple weeks ago, I announced a contest to bling out your assistive devices/medical implements/sick chick stuff. And you did not disappoint! Many of you shared some beautiful creations, and I’m just tickled pink at your creativity and courage. It takes strength to be so public with your health challenges, and it means a great deal to many people to see you having fun with what is otherwise a crappy situation. I applaud everyone who participated in the contest!   The winner: E. B. Fromkes of CFS Warrior Art Babes, this chick has got glitter running through her veins and paint coating every surface of her life. Her life is art, and she does not let multiple chronic illnesses stop her from creating. I absolutely adore her spine jacket, which she showed off on E.B. Fromkes on Instagram as her chosen outfit for a doctor consult. I’m also a big fan of her spoonie crown, which is a simultaneously vivacious and dark visualization of reclaiming life in spite of illness. (If you don’t get the spoon reference, check out my pal Christine Miserandino’s Spoon Theory, which lots of us find hugely relatable.) One of the great challenges we face as ChronicBabes is expressing our experience without putting people off. Yes: It is not our job to make people feel comfortable with our experience. And: It’s still great when we can find a way to express our difficulties and struggles without being a drag. I think this artist has got a fabulous approach.   Runner-up: Amy Defalco This ChronicBabe shared a couple pics of her migraine mask on Facebook, and I love her brave, public approach to handling symptoms at work. She says: “The back story is that I’ve had migraines since I was a kid. Daily, chronic cluster migraines for about 12 years now. No meds, remedies, weird stand on one foot things have worked. This is something I wear at work, I was telling the girls about your contest & they chided me into entering. They think it’s a riot. The words “Go Away” are directed at the migraine but let people know I need space as well.” You’ve gotta love that she’s not shy at work, and that her co-workers actually encouraged her to make her art even more public! Love it.  We had many more entries, and I wish I could send prizes to everyone, but then I might run out of glitter. OK, sure, I will never actually run out of glitter… I still want to share with you pics from the many babes who...

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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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Info posted here should not be considered medical advice; it's not intended to replace consultation with physicians or other health care providers. 

Every Babe needs to find her own path for achieving optimal wellness. While we do tons to help guide you, it’s up to each of you to make well-informed choices and live with the consequences. ChronicBabe.com assumes no liability or responsibility for stuff that goes wrong.

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Take what you like from this space, and leave the rest. Use what you learn to make your life better. Be responsible for your own choices. And please don’t sue us. XO!

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