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How I Maintain My Happy

Posted by on Jul 11, 2016 in acceptance, coping, Creativity, featured, guest author, inspiration, pain, resilience | 10 comments

Post written by ChronicBabe Amy Graves   In the Beginning… I’ve dealt with different types of chronic pain for as long as I can remember. I was diagnosed with migraines and seizures at the age of three; this meant that at an early age I had to learn how to manage pain. I trained myself to go to bed as soon as I felt a migraine coming. I learned what my triggers were for seizures and attempted to avoid them. I was lucky in that I still had a mostly normal childhood. Then, in 2004, I injured my left arm. As a result of that injury I was diagnosed in 2007 with complex regional pain syndrome (CRPS). Through three years and 13 doctors, I kept telling myself someone will figure this out. The pain will be cured and I will go back to normal. But the diagnosis brought with it the realization I would have to live in pain every day for the rest of my life.   The Realization that Sparked a Change My diagnosis left me depressed. How could I live with constant burning pain? My pain levels started increasing and the feeling of hopelessness was completely consuming. Then one day I was on the phone with my mom. I realized I had become a negative person – like her. I looked at her life, and I didn’t want to go down the same path. So I made a deliberate decision to reform my attitude. I altered my focus so finding the positive became a daily practice. This change in thought was not easy. It took at least a year before I was able to see the positive without having to stop and ask myself what is the silver lining? This does not mean I was – or am – happy all the time. When I lost the ability to work 20 hours a week I had to focus on the positive outcomes. I trained myself to look at the positives rather than focusing on the negatives, like losing money.   My Secret The key to me maintaining my happy is allowing myself to have bad days. I have days where I cry or get mad at the world. At the end of the day, I know it won’t solve my problems, but I feel better. You will exhaust yourself trying to be positive all the time. No one else can expect you to be happy all the time, either. When I have to deal with a problem, I let myself feel the necessary emotions, whether it be anger, sadness, or even fear. Once I am done, I sit back and analyze the situation. I focus on...

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8 Things People Say To Me About Crohn’s That Piss Me Off (And What You Can Say Differently)

Posted by on Jun 27, 2016 in acceptance, coping, featured, friends and family, guest author, pain, practicalities, ranting | 21 comments

Hi babes! My name is Alix and I’m a ChronicBabe summer intern. I was diagnosed with Crohn’s Disease when I was nine and have spent my life jumping from treatment to treatment and learning how to overcome the shame that accompanies inflammatory bowel disease (IBD) symptoms. Sometimes, even though usually with best intentions, friends of mine (or strangers) will ask me offensive or inappropriate questions about my Crohn’s. For all fellow ChronicBabes – this is for you to know you are not alone in this frustration. And for my friends and future strangers: tuck this away for reference.   1. WHAT I HEAR: My cousin’s friend has Crohn’s and went on X diet or Y medication. You should try it; I’m sure it will work for you. WHAT IT MEANS TO ME: You have the best intentions and you are trying to help but you don’t know anything about my medical history or my current diet regimen. You don’t understand how offensive it is to give treatment advice when you are not my doctor. WHAT YOU SHOULD SAY INSTEAD: My cousin’s friend has Crohn’s and finally found a diet-based treatment that worked for him/her. I know how hard it is to find something that works. I’m here if you want to vent.   2. WHAT I HEAR: My aunt had ulcerative colitis, too. WHAT IT MEANS TO ME: Either your aunt is dead or dealt with a different non-chronic illness but regardless it you haven’t done your research. Because ulcerative colitis and Crohn’s are lifelong illnesses it feels awful to hear you brush it off as something that can be cured. WHAT YOU SHOULD SAY INSTEAD: My aunt also has ulcerative colitis. (Or, in the case that she has passed away: My aunt also had ulcerative colitis. She passed away X years ago.) It’s an awful disease. I’m sorry.   3. WHAT I HEAR: You can’t eat gluten, lactose, or eggs? I totally understand. I’m a vegan and it’s so hard to find food sometimes. WHAT IT MEANS TO ME: My disease-based food restriction is equal in your mind to your lifestyle choice-based food restriction, which it is not. As nice as it is to try to sympathize with someone else’s food restrictions, it is beyond frustrating when someone who chose a lifestyle diet change tries to equate it with your disease taking all the foods you love away from you. WHAT YOU SHOULD SAY INSTEAD: You can’t eat gluten, lactose, or eggs? I don’t eat dairy or eggs either because I’m a vegan but I can’t imagine not being able to choose what to eat. It must be really hard.   4. WHAT I HEAR: You get such-and-such...

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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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3 Things To Do When Things Fall Apart (AWAP Wednesday)

Posted by on Mar 30, 2016 in coping, featured, Health Care Reform, inspiration, pain, practicalities, self care | 4 comments

It’s been a really, really rough couple months here at ChronicBabe HQ. I’ve been flared up so badly I couldn’t work, wasn’t socializing, wasn’t even bathing regularly—it was BAD. I’ll explain why this happened in an upcoming post, but for now, the important thing is that I’m starting to feel better again. Yay! This week, I filmed my first fresh AWAP Wednesday video in almost two months! In it, I share my top three strategies for coping when your life feels like it’s falling apart. I would LOVE to hear your reaction so take a few minutes now and watch, and then join the conversation below… *AWAP = As Well As Possible Now it’s your turn: What do YOU do when things take a turn south? Which strategies have helped you the most? 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: I’m baaaaaaaack! Didja miss me? I missed me! I haven’t recorded a video in six weeks so this is momentous. Woo hoo! 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? Working From Experience I have been in the midst of a months-long flare that was, quite possibly, the worst I’ve felt since I was initially diagnosed with fibromyalgia. For weeks, I couldn’t work, didn’t sleep well, couldn’t socialize, didn’t make any crafts… I was a WRECK. It felt like everything was falling apart—like my life was in a downward spiral. Good thing I am a ChronicBabe, because we ChronicBabes know that when everything goes to shit, we’ve got to take action FAST to take the best care of ourselves that we can in spite of things that are out of our control. Luckily, I’m on the upswing again, and that’s a huge relief. With my head a little clearer, I’m able to tell you about the three things I did to keep myself afloat during this really bad spell. Sacred Practices I’ve made a couple videos on the concept of Sacred Practices, as taught to me by my friend and coach Jackie Sloane. My sacred practices are a...

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Interview and a Giveaway: Toni Bernhard’s “How to Live Well with Chronic Pain and Illness”

Posted by on Jan 26, 2016 in featured, giveaway, guest author, inspiration, pain | 47 comments

UPDATE: Winners Chosen! If you are Jenny Riley who posted on our Facebook page… if you’re @apieceworklife who commented on our Instagram… If you’re Corah Webber who commented in the comments below… you won! Please reach out, using the Contact page, or respond on the appropriate social media network and I’ll give you details for collecting your prize. Congratulations!   If you’ve been a long-time ChronicBabe, you know I adore Toni Bernhard. She has written a trio of books that I consider required reading for those of us with chronic illness: How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow and the new, completely lovely How to Live Well with Chronic Pain and Illness: A Mindful Guide You don’t have to be a Buddhist to get a ton out of Toni’s work; it’s designed to be meaningful and powerful for all who read it, no matter their faith. I’ve loved her work over the years (you may also enjoy some of her columns at Psychology Today) and I consider her a dear friend. An interview: Toni released her third book a couple months ago, and because she loves ChronicBabe so much (blush!) she recorded an interview with me about How to Live Well with Chronic Pain and Illness. I’m thrilled to share it here; it’s not too long, not too short—it’s just right. You will feel warm in your heart once you listen, and you’ll learn a lot, guaranteed. Click on the image to listen now:   A giveaway (well, THREE, actually!): Toni has been so generous as to offer three copies of the audiobook edition of How to Live Well with Chronic Pain and Illness. I am thrilled to offer this giveaway! Here’s how you can win (you have three chances): Opportunity #1: Add a comment below, sharing your favorite coping technique. Don’t spare any details! Opportunity #2: Head to the ChronicBabe Facebook page and “like” it, add a comment to the post about this interview with Toni, and share the post to your timeline. Opportunity #3: Follow @ChronicBabe on Instagram, add a comment to the post about this interview with Toni, and repost it to your feed. Entry deadline: February 1, 2016 I will pick three winners, one from each category, the evening of February 1, 2016. So pick one to enter, or enter all three to boost your chances. Yay! By participating, you’re also sharing this valuable resource with more people who need it, so everyone...

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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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