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How to respond when someone says “this is what you have to look forward to when you’re old”

Posted by on Aug 30, 2017 in activism, ChronicBabe Basics, featured, relationships | 17 comments

Yesterday, I was relaxing in the hot tub at my gym. I had just completed an hour of strenuous water movement class, and my body was like WHAT ARE YOU DOING TO ME…so the hot tub was an essential relaxing moment. The usual gang of fellow classmates was there—women, like me, who take the class because it’s accessible despite physical limitations. What you need to know is, everyone else in the hot tub was a solid 20 years older than me. And that’s all good. We’re all in it together. (I mean, literally in it!) But yesterday, a woman I’ve never spoken with before turned away from a group conversation about chronic pain and illness and said to me: “This is what you have to look forward to when you’re old.” Sigh. I hate these conversations. I’m not sure what the goal is of someone who says that. Are they trying to freak me out about my future? Sorry, babe, I’m not that easily scared. Are they feeling awkward because they’re leaving me out of a group conversation, and somehow trying to explain why? But in a backhanded way? I don’t know. I can’t understand the benefit of ever saying that phrase to someone. I know I look younger than I am; no one ever guesses I’m in my mid-40s. And I’m the young one in the class usually, so I stick out. But still: There’s no need to single me out. An awkward conversation Anyway, I took a breath and started my usual spiel: “Actually, I’ve had chronic pain and illness since I was 25, so your conversation is familiar to me. No need to explain.” Her: “But you’re so young! You were diagnosed when you were 25? Oh, that’s so horrible! I’m so sorry.” Me: “Thanks, but no need for sorries. I’ve worked it out and actually made a life for myself in spite of it, and I’m proud of my work.” I described ChronicBabe, which she seemed to find fascinating: Her: “Oh, you’ve really made lemonade out of lemons! Good for you! But I’m so sorry.” Me: “Really, no sorries necessary. By the way, what’s your name?” We introduced ourselves, and then I said: “Of course, you can always just call me ChronicBabe if you forget my name.” Her: “Oh, no, I could never.” She looked down. She got uncomfortable. She started to climb out of the hot tub.  Me: “Okay, nice talking to you. Have a great day!” Her: Grumble grumble awkwardly departs. Is it generational? Sigh. I think maybe it is; I talked to my physical therapist about it today, and she reminded me that people a couple decades older than me were raised to...

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Watch Out, Diabetes – Don’t Stand In My Way

Posted by on Aug 26, 2016 in activism, career, coping, featured, guest author, inspiration, resilience | 0 comments

This week’s guest post is written by ChronicBabe Christel. Christel is a blogger, certified personal trainer, bikini fitness competitor and fitness model. She has been living with type 1 diabetes since 1997, and at an early stage decided that that wasn’t going to slow her down. On TheFitBlog.com she writes about Health, Fitness and how to be Fit With Diabetes. She trains people with diabetes from across the globe, online and in person, and supports them in meeting their fitness goals.     I’m probably one of the most stubborn people you will ever come across. …Or you could call it focused or determined. Yes, that sounds better. My husband says I am like one of those huge tankers that needs a lot of time (or an iceberg) to change course. ☺ I have managed to make my stubbornness work to my advantage though (for the most part) and I truly believe there is hardly anything I can’t do if I set my mind to it. I’ve managed to get my MBA, travelled the world, had a successful corporate career, started my own business and, lately, competed in (and won) a fitness competition.     It all starts with your mindset So what does all that determination have to do with my diabetes? Well, it made me decide right away that my 1997 Type 1 diabetes diagnosis would never prevent me from doing and accomplishing everything I wanted in life. Honestly, I never thought twice about that first injection or about arranging my life so that the diabetes didn’t interfere with the things I want to do. That doesn’t mean that it’s easy to manage the diabetes monster, but I would claim that it’s doable if you set your mind to it, take the time to understand your unique reaction to different stimuli, and structure your life so that the diabetes doesn’t run the show but is instead in the background. I know that I am lucky to “only” have diabetes, and none of the other “friends” it can bring along. Additional physical or emotional burdens will of course change the situation and how hard it is to figure out your diabetes management.     How fitness took my diabetes management to the next level   My adventure into fitness and making that my career has actually been what has taken my diabetes management to the next level. I spent a lot of time tuning in, listening to my body, experimenting, and analyzing the outcomes (and a lot of blood glucose testing). To me, that’s the key to learning; experiments and analysis. I’ve found that my body’s reaction to stimuli differs as I get older, but the patterns are...

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Be Nice (in Conversations About Chronic Pain and Illness) #AWAPwednesday

Posted by on May 18, 2016 in activism, announcements, ChronicBabe Basics, featured, ranting, relationships | 18 comments

Last week, some folks decided to jump into a ChronicBabe Facebook conversation and be disrespectful to others. It sucked. The conversation was originally about a handful of stories about chronic illness and how relatable they are. Then one person declared that one of the women profiled was using an incorrect diagnosis, and that it was “pseudoscience.” I stepped in to stop the thread, asking folks to back off and be respectful. They didn’t; in fact, they stepped up their efforts. It was very upsetting for many people, and I eventually deleted the whole post to shut down the conversation. I hated doing this! The ChronicBabe community is built on a solid foundation of mutual respect and support, so it’s awful when some folks can’t see that. I understand that they were well-meaning, but no matter their intentions, they were being rude and disrespectful. So today’s video is a handful of thoughts I have about this event, and a reassurance that I will always protect ChronicBabe and keep it positively awesome. Even if the tone of the nation’s conversation about chronic pain and illness is trending negative, we don’t have to follow suit. I’m so eager to hear what you think! Watch today’s video, and then chime in below. *AWAP = As Well As Possible Now it’s your turn: Have you faced bullying or negative feedback online? How did you react? Were you able to steer the conversation toward a more productive outcome? I would love to know! Share your experience in the comments below. Want more #AWAPwednesday? Check out our #AWAPwednesday video playlist, which has more than 100 videos packed with practical advice, lots of humor, and bloopers. Lots of 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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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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