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Representation Matters: The HealtheVoices 2019 Conference

Posted by on Apr 30, 2019 in activism, featured, Work | 0 comments

I don’t go to church, but I imagine that it feels a bit like how I felt at the HealtheVoices 2019 Conference a couple weeks ago. A deep sense of comfort and belonging. A common belief in a greater good for all. Friendships forged out of shared joys, traumas, and passions. A lot of singing and dancing. Tears of joy, of connection, of understanding. Sharing of resources. A feeling like everyone around you is family. I made new friends like Tammie Snowden, who advocates for folks with diabetes, and met old friends IRL for the first time, like Devri Velazquez, who lives with Takayasu’s Vasculitis. (I posted a ton of pics at my Instagram account.) In the world of patient advocacy, an event like this — sponsored by industry organizations, but designed by and for patient advocates — is rare. The main organizer is Janssen Pharmaceutical Companies, an arm of Johnson & Johnson, and they bring in a handful of big sponsors as well. They have a strong patient advisory board that helps create the programming for the event, and they cover travel expenses for every patient who attends — 140 of us this year. It’s a massive undertaking and it was friggin’ awesome. The open mic night alone was worth all the spoons I spent that weekend. (Stand-up comedy about ostomies! A drag queen performing You Got To Show Me Love! Original poetry and spoken word performances!) Being a patient advocate can be kind of lonely at times. I’m sure that sounds odd to you; after all, I’m constantly speaking with people, connecting on social media, speaking at events… I do have a strong sense of community. But when you live with chronic health stuff, and you advocate for others, your own health concerns often get brushed aside. I have had people write me angry letters, demanding I film more YouTube videos because they depend on me. (I paused filming new videos last year while I dealt with a massive months-long flare-up.) I’ve had event organizers expect me to travel and work for free for the “exposure,” and when I explain that “exposure” doesn’t pay the bills, they seem stumped. (And then I feel sad that I can’t go to the event.) While I’m sure you, dear reader, are not this type of person, there are lots of folks in our community who are demanding and unreasonable, and expect us patient advocates to do all of our work out of the goodness of our hearts. But that’s just dang impossible. And the folks who organize HealtheVoices get it. Not only do they make sure we travel comfortably and that all our needs are handled for the days we’re...

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5 Ways to Avoid Overwhelm When You Have Chronic Illness #AWAPwednesday

Posted by on Feb 15, 2017 in acceptance, ChronicBabe Basics, coping, featured, practicalities, Work | 12 comments

Okay, I’ve got to remember to go to the dry cleaners, and call my health insurance about the EOB, and make sure I take my new vitamins this afternoon, and paint my nails for a photo shoot, and, and write a handful of emails, and… whew! I am overwhelmed! So it really resonated when one of our fellow #ChronicBabes emailed me to ask about overwhelm. (Did you know you can request a video on specific topics or questions around chronic illness life?) It’s easy to get overwhelmed when we have chronic illness, because there are so many things to juggle—and the world is just overwhelming all on its own! I hope you find some of my tips helpful.     *AWAP = As Well As Possible Now it’s your turn: What kinds of things help you get calm and tackle overwhelm? I want to know! Tell me all about it in the comments below. Want more #AWAPwednesday? Check out our #AWAPwednesday video playlist, which has more than 130 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! Smooches! (Rough) Transcript: Hi! I’m Jenni Grover 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? One of our fellow #ChronicBabes wrote me recently with a question about overwhelm. She’s been feeling more and more of it since she got sick, and she wondered if I sometimes got overwhelmed, too—and what I do about it. Girl, you KNOW I get overwhelmed sometimes! Not only do I have a handful of chronic illnesses to manage, but I also run my own business teaching women how to live full lives in spite of being sick chicks, and I’m finishing writing my first book, and I have a couple of time-consuming hobbies, and friendships and a husband to maintain, and… I am SO with you on the overwhelm thing. I have a few tricks up my sleeve when it comes to handling overwhelm. Here we go: Make a list. I know, it sounds obvious, but seriously: Make a list. Sometimes I use the reminders app that’s built into Apple computer products, so my lists are synced across all my devices. Sometimes I use the Evernote app if I want to make a list of things I share with my husband or a friend, so we...

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The Art of Being Chronically Ill

Posted by on Sep 5, 2016 in acceptance, career, coping, Creativity, fears, featured, guest author, inspiration, resilience, Work | 12 comments

This post is guest-written by ChronicBabe HellyTheElephant. It is never easy to be creative. If you have been told you are talented then there is always the fear of a negative response; if you have never felt you are any good, then illness can amplify your lack of confidence. But as that great artist Dr. Seuss put it: “Be who you are and say what you feel because those who mind don’t matter and those who matter don’t mind.” So…I have my work propped up while I am lying down on my bed in the Hellyphant house (SW England). The blinds are shut, crayons are rolling around the duvet, and I have just dipped my paintbrush in my herb tea. Readers will be relieved that this hellyphant is not wearing the hotpants and striped tights she wore as an art student some moons ago; neither am I sporting a beret and a smock (although come to think of it one would hide my unwashed hair, and the other could conceal my muffin-top…). The first time I was chronically ill was in the nineties. There were no Internet forums (…and no ChronicBabe!), so info was hard to come by, and writings about ME (Myalgic Encephalomyletis) were still in the cave-painting stage. I had been a 22-year-old professional illustrator…Then I got sick. Really sick. And, well, the rest of my story probably follows similar lines to your own: you search for answers, you assume you will get better…until you realise this is going to be a marathon not a sprint (ironic as you definitely won’t be doing either!). Now 26 years greyer, and with ME reducing me to about 30% of function again, (even during my time of being “well” it had never entirely gone away,) not that much is lovelier the second time around. However, I have been really blessed by marriage to Mr. Helliphant (who is also a chronic health dude), and a strong faith. The other thing that is really different is this time I proudly label myself a “Horizontal Artist” due to the fact I can only work lying down. Initially I was happy to have time to be scribbling again, and I drew nature – the flowers friends brought me. I had no idea of how I could paint the sense of frustration and disappointment that was growing week upon week.   There was “That Day.” “That Day” started with the sound of the last straw being added to this elephant’s painful back. I was several days into a grisly flare-up, with no answers from the medics, and in a lot of pain with no effective painkillers. I felt furiously angry at everything and everyone. How...

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5 Reasons Why Leaving My Job and Working From Home Was The Best Decision I Ever Made

Posted by on Aug 15, 2016 in acceptance, career, coping, Creativity, featured, guest author, inspiration, pain, practicalities, resilience, self care, Work | 1 comment

This post was guest-written by Jennifer Kain Kilgore. Find her at her blog, Wear, Tear, & Care here. Hi! My name is Jen, and I’m a 29-year-old attorney, editor, writer, and patient advocate. I have spinal fractures from two car accidents that required two cervical fusions. The jury’s out on whether I’ll need more surgery. I worked in an office for three and a half years after law school. At that point I was dealing with the fallout from my first car accident, which happened in 2004 and decimated my thoracic spine. Law school happened, and then my job, and then… another accident. That second accident became a barrier to a normal life. Eventually I decided to leave my job and work from home. Here are the reasons why it was the best decision I ever made. My health comes first now. I was living the dream: I had a legal job that started at 8 am, ended around 6 pm, had great coworkers, and allowed for a life. My bosses were cool. During my second year, however, I had another car accident. The moment the pain set in, I knew I’d eventually have to leave the traditional workforce. In the year before I left I suffered from increasing pain (which caused repeated vomiting and a hernia), insomnia, loss of control of my hands, limping, muscle spasms, and loss of my ability to focus. In the end, it wasn’t worth it. Now, I telecommute from a recliner. I schedule my day around doctors’ appointments. I work a schedule that flows with when I’m feeling best. Before, there wasn’t time in the day to work on my health, so it controlled me. I am much happier.  The “What should I do?” questions wore down my family –  especially my husband. I steered every conversation in that direction because I wanted someone to say, “No, you can’t work.” I wanted someone to make that impossibly hard decision for me. My husband begged me to think about my health while I thought about finances. How could I leave without a backup plan? What if I made the wrong decision? So I did what is generally inadvisable. I started a side-hustle, working on sites like Upwork.com and Flexjobs.com to create a cushion for when I made the jump. I don’t know how I did that, because the level of pain at that point was inhuman. I think it’s because I knew that leaving was inevitable. Now, having the weight of that decision off my chest feels unbelievable. I can breathe. I can think. And with that, I can work. I’m not paralyzed. My body doesn’t rebel. The longer I stayed in the office, the more my body fought....

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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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How to Find Your Flow with Chronic Illness (AWAP Wednesday)

Posted by on Oct 7, 2015 in acceptance, ChronicBabe Basics, featured, practicalities, resilience, Work | 14 comments

People email me questions all the time about living the ChronicBabe life, and one of the questions I get most often is “How do you get it all done? How do you find your flow?” The answer is not simple, babes, because I’ve put a LOT of practices into place to ensure I squeeze the most out of every day. But there are three things I do every single day that help me stay on track—to find my flow. Today’s AWAP Wednesday video includes three tips that I use successfully to stay in the flow… and get much more done, despite having multiple chronic illnesses. Watch today’s video: *AWAP = As Well As Possible Now it’s your turn: What practices have you put into place to find (and keep) your flow? What does flexibility look like to you? 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: I’m in the flow, I found my rhythm, I’m doing my thing, y’all. I’m in the flow. And today, I’m going to share my strategies for finding your flow so you can get MORE done and get on with your ChronicBabe life. 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? How do you get it all done? People email me questions all the time about living the ChronicBabe life, and one of the questions I get most often is “How do you get it all done? How do you find your flow?” The answer is not simple, babes, because I’ve put a LOT of practices into place to ensure I squeeze the most out of every day. But there are three things I do every single day that help me stay on track — to find my flow. Organize Your Meds and More You can’t find your flow if you’re constantly trying to remember everything you need to do to take care of yourself. If you’re shaking meds out of a dozen bottles every morning, STOP. If you’re always misplacing your inhaler, KNOCK IT OFF. If you’re wondering right now if you took 5mg or 10gm, was...

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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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