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Community Collab: What’s in Your Bag?

Posted by on Jul 8, 2016 in community collab, Creativity, featured, guest author, practicalities, self care | 3 comments

Hey babes! This week’s QOTW was “What’s one thing you never leave home without?” We had a bunch of great answers and an especially funny one (that you’ll have to scroll to the bottom to see!)   Some of the most common answers included: Phone, with pill timers! Hair ties ChapStick Inhaler Credit cards and drivers license (note the license info) Kleenex And of course pills of every shape and size And: keys, wallet, planner, pain gel, water Our favorite answer comes from Ann U. She says: “I think we should list what we WISH we carried! My list is a string bikini, a thermos of piña coladas, George Clooney’s phone number & keys to my Maserati.” All graphics made by Alix Kramer, ChronicBabe intern and proud...

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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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Do you know how to improvise? #AWAPwednesday

Posted by on May 11, 2016 in ChronicBabe Basics, coping, featured, practicalities, resilience | 12 comments

We have no power today at ChronicBabe HQ! Boo! Hiss! Not only does that mean I can’t take refreshing sewing breaks (I’ve got a fun pink & orange quilt in progress) but also: no video today. Boo! Hiss! I know. But! Let’s improvise. We do it every day, after all, don’t we? I mean, think about the Spoon Theory, created by my wonderful friend Christine. Some days, we wake up, head to the kitchen, and our drawer is full of spoons — we can do almost anything we want. Other days, we pry open that drawer only to find one or maybe two spoons. But we still have errands to do, and a kid to feed and bathe, and we need to stick to our yoga routine or we’ll pay for it the next day… so we improvise. We figure out how to run those errands using less energy, like taking the bus so we don’t have to wear ourselves out driving… or we prioritize and only do half of the errands… or instead of going to the grocery store, we scrape together dinner from leftovers, even if it’s a weird pairing… we dampen and comb our kid’s hair, knowing it’s no big deal for them to skip a bath occasionally… or we ask a friend to come over and help with that task… we find a new YouTube videos about chair yoga, so we can still get some yoga in, if not our entire routine, because dang it, we’re going to make this work! That’s what we do as ChronicBabes, every single dang day. We improvise. I believe our ability to be flexible, to think of workarounds, to get creative, is one of our greatest strengths as ChronicBabes. To become truly great improvisers, we work on a few other skills. We learn how to get cool with fear, so it doesn’t stop us in our tracks. We practice saying “no” so we can weed out non-essential tasks from our hectic days. We sing a song to ourselves when we falter, so we can get right back on up again. We practice radical self-care, to make sure our basic needs are met… which means we’re ready for whatever life throws at us. And we go easy on ourselves if we’re not perfect, because perfection is a myth, after all. When we practice these skills, we’re ready to improvise — to think on our feet. It’s a beautiful skill to cultivate, and one that every person would do well to learn. Today, I’m improvising by walking over to a nearby cafe and using their wifi. It’s not strong enough to upload a video, but it’s enough that I can send you this email…to still...

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Unfriend Me! How to Use Facebook to Cope Better with Chronic Illness #AWAPwednesday

Posted by on May 4, 2016 in ChronicBabe Basics, coping, featured, friends and family, practicalities, self care | 10 comments

  This week’s video came from a desire of mine to create better boundaries and protect my precious time… so I unfriended a few hundred people on Facebook. It is wonderful! I think that unfriending folks—and a few other strategies I share today—can help you get back lots of time to spend on quality conversations. Watch today’s video now, which is packed with practical advice: *AWAP = As Well As Possible Now it’s your turn: How are you managing your digital presence? Have you unfriended people? 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! ** update: a lovely reader shared this advice, which seems to work fairly well. if you’re unliking more than a couple dozen pages, though, do them in batches. trust me. 🙂 In your video you said that you have to unlike each page but actually there is a way to unlike them in bulk. Click on “Like Pages” on the left hand side of your facebook timeline. On the pages page click on “Liked Pages” at the top. On the top right there is a “Review Like Pages” box. Click on the “Get Started” box. A page will come up with all the pages you currently like. You can select the ones you want to unlike. Easy peasy! Hope that helps.    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? Social media has taken over our lives in many way, and Facebook is our biggest digital overlord. No longer a simple way to stay in touch with friends, Facebook is now how we get political news, family updates, chat with friends overseas, and a bazillion more things. I’m not here to argue against using Facebook; on the contrary, I love using Facebook—strategically. And that means setting good boundaries. And that means unfriending folks. How much time do you spend scrolling past updates from people you’ve never met but feel obligated to be friends with because you once met them at a party? Or you went to high school together? Or you both know someone else, so...

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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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How to Get Cool with Fear (AWAP Wednesday)

Posted by on Dec 2, 2015 in acceptance, ChronicBabe Basics, coping, fears, featured, inspiration, practicalities, self care | 9 comments

Today’s AWAP Wednesday video offers one of my favorite, and somewhat radical, approach to fear. We ALL feel fear about life with chronic illness. You are not alone in feeling afraid! But we don’t have to let fear rule our world. We can learn how to get cool with it. Watch today’s video, in which I share a very simple-but-effective technique: *AWAP = As Well As Possible Now it’s your turn: Have you tried sitting with fear? Do you think I’m being a weirdo? Are you excited to try this technique? 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: Eeeeek! I’m scared, too. We all are. Today’s video is a quickie, and a must-watch. Let’s get scared babes! 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] Chronic illness is scary. There’s no getting around that. And anyone who tells you they feel fearless about being sick is, well, probably not being 100% honest with you, or with themselves. Everyone Gets Scared. Everyone gets scared. Everyone. Whether you’re newly diagnosed or a seasoned ChronicBabe like me, you will have moments of fear. You’re afraid you’ll never be well again. You’re afraid of how your illness will impact your family. You’re afraid people will abandon you. You’re afraid of that new bump on your arm. Life with chronic illness is full of fear-inducing moments. You’re not alone with this. Can You Sit With Your Fear? I’ve got a TON of other videos that offer ways to identify fears, conquer them, cope with them, but this video is not one of them. Today, I want you to do something radical. I want you to sit with your fear. “Sitting with” something is a concept from meditation, and from Buddhism, and from many other spiritual pursuits. The idea is to simply look at the feeling, instead of trying to fight it or rid yourself of it. I know, bizarre, right? Here’s the thing: Fear is just a feeling. It’s a moment of experience that passes along your synapses in the brain. It can be fleeting… but sometimes,...

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WE’RE NOT DOCS!

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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