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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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What do you do when you feel like it’s the worst day ever and you want to give up?

Posted by on Sep 2, 2016 in acceptance, ChronicBabe Basics, classic post, coping, fears, featured, resilience, self care | 5 comments

Special note: This is classic post appeared in 2012 on the original ChronicBabe site. And it’s an example of “getting back to the basics” we’ll be doing in the September 2016 Secret Club. Join us!   I’ve had them, and I bet you have, too: Those days when everything feels way too hard, like every small task is Herculean, like the world is out to get you, like nothing on Earth will ever be right again. The days when you feel like giving up. The days when you think it might just be easier to quit work, go on disability, and stop caring about your career. The days when you want to tell everyone you know to eff off. The days when you want to throw your purse in the car and just drive off into the sunset. The days when you want to kick your doctor in the nuts. The days when you feel utterly alone. The days when no one—not your nephew, your husband, your girlfriend, your daughter—can make you laugh, because there’s not a damn funny thing in the universe. The days that feel like a horror movie. The days when you turn out the lights, curl up under the covers, and sob yourself to sleep. The days when you Google your conditions endlessly, hoping someone has come up with a magic fix. The days when you feel like it’s not worth trying anymore. The days when you just don’t care. The days when you feel like it’s not worth it. The days when you feel like giving up. Yup, I’ve had those. You might be surprised by how often I hear this question: Maybe YOU haven’t felt this way, but how am I supposed to cope on the days when I want to give up? Oh, ladies. If you think I’ve never wanted to give up, you’ve got me all wrong. I’ve had plenty of those days, and I’m sure in my life I’ll have at least a few more. Even the most kickass ChronicBabe has moments of self-doubt and exhaustion and frustration. It just comes with the territory. So what do you do when you want to give up? First: Don’t. Next: Come here. Notice that there’s not just a website, but an entire community of women who have walked in your shoes. So you may not have someone holding your hand physically, but you’ve got thousands of women who can support you during your time of need. Then: Watch this 5-minute video of Bjork singing “It’s Not Up To You,” a song I find immensely comforting. The lyrics include this perfect bit: “If you wake up, and the day feels broken, just lean into...

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A Letter To My Sister With IBD

Posted by on Sep 2, 2016 in acceptance, coping, fears, featured, friends and family, guest author, inspiration, pain, relationships, resilience | 8 comments

A photo of you I took in August. We woke up at 5am for sunrise on the beach.   To my 17-year-old sister with Ulcerative Colitis (UC): When you go off to college soon you will have days when you aren’t able to go to class. When you email professors to let them know, you’ll be too ashamed to tell them what’s really going on. You’ll tell them you’ve been throwing up all night and you’re afraid to leave the bathroom and sit in a classroom. The second part will always be true – you will be on hour three or four of sitting in the bathroom and you are afraid to leave it. But we both know our inflammatory bowel disease (IBD) doesn’t make us throw up. When people ask you about your health-related absences, you will be vague and say: “Sorry I was in the bathroom for so long. I was sick.” And if they prod it will become: “Yeah, totally throwing up for like 30 minutes. Super gross.” It’s not technically true. But it you will be less afraid to say that than the truth.   I called you in April to interview you for my final article for my final journalism class of college. I had decided to look into why I felt too ashamed to talk about my true Crohn’s symptoms. I read books on the psychology of shame, interviewed our GI doctor and a psychologist, talked to friends and acquaintances with Crohn’s and UC (that included you!) and I found an overarching trend of shame. The belief that we are “lesser,” that we are somehow “dirty” and “not whole” because of our symptoms, pervaded almost every interview with other IBD patients. The shame here is a painful belief that one has a failure of being, that one is too flawed to be wanted or valued by others and that we will be abandoned. My research made a lot of sense to me. I knew one of the main reasons I was too ashamed to talk about my symptoms or my illness in general was that I had a reputation to uphold: that of a person who has not failed at being, who is not too flawed to be valued by her peers. I was afraid that if I spoke frankly to friends or, most terrifyingly, boyfriends, they would leave me. This fear of abandonment is at the core of our shame. I never told you that after I interviewed you on the phone, I sat in my bed and cried. When you were diagnosed at age nine with UC, four years after I had been diagnosed at the same age with Crohn’s, I...

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Embrace the Suck of Chronic Illness #AWAPwednesday

Posted by on Aug 31, 2016 in acceptance, ChronicBabe Basics, coping, featured, inspiration, practicalities, resilience | 4 comments

Sometimes you will just feel like crap, and no amount of pep talks from me is going to make you feel better. This is how I feel today. No matter how much self-care you do, no matter how faithfully you take your meds, no matter how good you are at your daily routine… sometimes, you’re just going to feel like crud anyway. I mean, this is true for ALL humans. So on some days, you just have to “embrace the suck.” Today’s video teaches you how to do just that: *AWAP = As Well As Possible Now it’s your turn: How about you? Have you tried to embrace the suck? How did it work out? 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! Smooches! (Loose) 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? Sometimes you will just feel like crap, and no amount of pep talks from me is going to make you feel better. This is how I feel today. No matter how much self-care you do, no matter how faithfully you take your meds, no matter how good you are at your daily routine… sometimes, you’re just going to feel like crud anyway. I mean, this is true for ALL humans. So on some days, you just have to “embrace the suck.” I heard this term, “embrace the suck,” from a couple of U.S. military veterans I’ve met recently. These are folks who live with chronic pain and illness and yet work so hard every day to accomplish their goals. If I understand their approach correctly, it is about acknowledging the reality of the suck, and moving ahead as much as you can. So here goes: I feel like crap today. My bowels are going berserk, I have a headache, my back is super-sore, and I’m exhausted. There – I said it out loud. I acknowledged it. Now, what can I do to mitigate this suck? I can drink lots of water to hydrate, I can take some pain meds for my back, I can eat a simple diet today to help calm my bowels, I can...

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Emergency Preparedness Issues and Solutions Series Part 3: Creating a Bug Out Bag

Posted by on Aug 31, 2016 in community collab, coping, Creativity, featured, guest author, inspiration, practicalities, resilience | 0 comments

This post was guest-written by Team Blue (Kyrie-Inn Blue with help from Tao Blue, Service Dog, Canine Good Citizen; and Mijo, Service Dog In Training).     Often disabled folks are too busy trying to survive day to day that they neglect tackling the emergency preparedness necessities that may just save their lives, their health, their property, their sanity, and their independent living status. Where do you store your important documents? How can someone track you in a SHTF (“sh*t hits the fan”) situation? Do you have a plan in place for solid shelter if you face a storm? If so, what do you need to have on hand to create viability? Two weeks without power has faced Team Blue on multiple occasions. Let us help you avoid omissions in your checklists!!   Today’s topic: creating a Bug Out Bag (BOB)   We all need to seriously evaluate our personal emergency preparedness on at least a quarterly basis, rather than wait until the weatherman predicts a “superstorm.” Emergencies of all kinds happen on a daily basis, even those that are un-weather- related, like fires, certain types of evacuations, identity theft, etc. Can you efficiently respond to rather than freeze in a crisis? Team Blue knows it’s easier said than done… unless you have taken the time to prepare, equip,and practice.   Today’s topic: Creating a Bug Out Bag (BOB) (aka survival bag, aka GO bag, aka get-home bag, if anyone cares to search Google for further information and ideas!)   Today, we look at what one should stock in their BOB.   The Basics We should first define what a BOB is, how we prepare and use a BOB, and then you may adapt your BOB to serve your particular needs and situation. BOBs contain the supplies, documents, and whatever you need in case of emergencies, where you may be forced out of your residence or vehicle and need to stay safe until you may return to either, or until you can get to a safe location. We have found it helpful to have one centrally located in the house, clearly marked, so if we find ourselves needing to have people like our home health aides, case managers/case workers go get it, they can easily run in and grab it.   We choose backpacks of different colors to identify which BOB is for which situation (we need several). Our service dog has his own doggie backpack for outing and a messenger bag for his hospital/fire BOB. Choose the bag that suits your physicality best. Often one can find reasonably priced gently used backpacks or other styles of bags at thrift stores, or by posting a “want” on freecycle.com; if...

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Emergency Preparedness Issues and Solutions Series Part 2: What To Stock In Your Residence for Various Emergency Situations

Posted by on Aug 30, 2016 in ChronicBabe Basics, Creativity, fears, featured, guest author, practicalities, resilience | 0 comments

This post was guest-written by Team Blue (Kyrie-Inn Blue with help from Tao Blue, Service Dog, Canine Good Citizen; and Mijo, Service Dog In Training).     Disabled folks are often too busy trying to survive day to day that they neglect tackling the emergency preparedness necessities that may just save their lives, their health, their property, their sanity, and their independent living status. Where do you store your important documents? How can someone track you in a SHTF (“sh*t hits the fan”) situation? Do you have a plan in place for solid shelter if you face a storm? If so, what do you need to have on hand to create viability? Two weeks without power has faced Team Blue on multiple occasions. Let us help you avoid omissions in your checklists!!   Today’s topic: what one should stock in their residence for various emergency situations.   We all need to seriously evaluate our personal emergency preparedness on at least a quarterly basis, rather than wait until the weatherman predicts a “superstorm.” Emergencies of all kinds happen on a daily basis, even those that are un-weather- related, like fires, certain types of evacuations, identity theft, etc. Can you efficiently respond to rather than freeze in a crisis? Team Blue knows it’s easier said than done… unless you have taken the time to prepare, equip, and practice.   EMERGENCY SUPPLIES for your residence Most survival and government emergency preparedness websites advocate planning for a three-day to two-week immediate crisis. Most everything one needs is available at the local dollar store, WalMart, and other discount retailers. If you wants to step up a level, other items like weather band crank radios are available for purchase at reasonable prices at Amazon.com and similar websites.   Start Saving Put aside $10 per month to begin equipping yourself at least minimally for SHTF (“sh*t hits the fan”) situations. If you can save more, that works… but we understand completely about limited finances, which is why we are attempting to keep the basics on the cheap!     Items available immediately and locally: Flashlights: At least one should be stored in every room of the house. Check the batteries monthly and change as needed. Batteries: Purchase multiple packages for your flashlight sizes, as many in all sizes as you can stock. Tip: they last much longer when stored in the freezer! Water: Often one finds oneself in a “dry” situation during SHTF. Make sure you ask your landlord (if you rent) exactly what utilities you will lose if the power goes out. For example: a residence in which we formerly lived still had water when we had no power. We had town water. However, we...

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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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