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A Voice from Better-Land

Posted by on Sep 12, 2016 in acceptance, coping, fears, featured, guest author, resilience | 2 comments

This post is guest-written by Faith Cornwall. In August of 2004 I was diagnosed with vulvodynia, a chronic pain disorder of the vulva, after what felt like five very long months. Finally, there was to be an answer, a solution, a CURE! Uh, nope. The gynecologist told me I should be grateful to have a diagnosis – an empty word – as they used to tell women that they were imagining the pain, making it up. And then she showed me the door. I googled the bejeezus out of my diagnosis, my experience, my symptoms, and found only a few abandoned blogs where affected women spoke of wanting to die. I wondered: did the blogs stop after a few posts because these women got bored, killed themselves, or, ever the optimist, perhaps because they had gotten better but never bothered to give us an update? Either way, it was not the community I was hoping for. But I promised myself I would get better. I was a college student then, and looking back I had something better than an online community: I had a group of bad-ass in-real-life friends, both men and women, who bravely stood beside me in the darkness and said, with that special bravado unique to ridiculous college students taking on the world, “F*** this S***!” Their courage lifted me up. Yes, I would get better, for me, and for all the women suffering as I did, past, present, and future. For all the women who were told their pain didn’t exist. For all the women who were shown the door. And gosh darn it, I did. It took a decade plus, during which I learned that healing can be a complex, multi-faceted, life-long, and sometimes vomit-inducing roller coaster of a process, and, at least in my case, took information, inspiration and help from resources far and wide, traditional and innovative, well-established and groundbreaking, logical to the head and sometimes only to my heart. Life being Life, I can’t guarantee I won’t have additional relapses. I never know if some new day might bring some new illness, as it has so many times in the past. I still live with a handful of health challenges, and although they too require love and care, they are not as debilitating as the previous visitors. But for now, I am better. My “work-in-progress” self is experiencing a prolonged state of Better. So, to you, Dear Hearts: I cannot guarantee an outcome. I do not know your solution, although I wish I did. But I can share my experience, molded over a decade of living with a tangle of debilitating chronic health issues. Better is Possible. (Gentle Note: It may not...

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Round-Up: Emergency Preparedness Posts, All in One Place

Posted by on Sep 6, 2016 in ChronicBabe Basics, coping, featured, guest author, practicalities, resilience | 2 comments

We’ve had such a terrific response to Kyrie-Inn’s series of emergency preparedness posts. And ironically, this babe is in the middle of the worst-hit part of Florida by Hurricane Hermine! But because of her awesome preparation, she and her dogs, Tao and Mijo, are doing just fine. We here at ChronicBabe HQ recommend you review her posts and get yourself prepared – we’re doing it, too. Here they are: Part 1: Managing your phone for crisis situations Part 2: What to stock in your residence for for various emergency situations Part 3: Creating a bug out bag We are proud to host this series on emergency preparedness for ChronicBabes. Have anything to add that we’ve forgotten? Hop into the comments for each post and share your tips....

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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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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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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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