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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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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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Why we MUST break through the taboos of chronic illness #AWAPwednesday

Posted by on Aug 17, 2016 in acceptance, ChronicBabe Basics, fears, featured | 9 comments

Poop. That’s right, I said it. Poop. You can’t stop me! Poop! We have a lot of taboos in our society, things we’re not supposed to talk about. But silence slows down progress and cuts off support. Today, I want to talk about why we must break the taboos we all face with illness. Watch today’s video now for some really – I mean REALLY – frank talk about my own experience with breaking the “poo taboo.” *AWAP = As Well As Possible Now it’s your turn: What taboos are you breaking? Which ones do you wish people would get over? 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? We have a lot of taboos in our society, things we’re not supposed to talk about. It was only a generation ago that no one said the word cancer out loud – we had to whisper it. My generation saw the rise of HIV and AIDS, and for many years most people were silent about being HIV-positive – but that did nothing to help the community. I understand why people were silent – they needed to protect their careers, their personal safety, their families – but silence slows down progress and cuts off support. Today, I want to talk about why we must break the taboos we all face with illness. The Poo Taboo and the Isolation Problem My intern, Alix, has irritable bowel disease or IBD. She introduced me to a new phrase yesterday, which I can’t believe I hadn’t heard before: the poo taboo. I grew up in a household of mouthy ladies and we talked about everything, so poo was never a taboo. But some people are REALLY hung up on talking about poop. We’re afraid to talk about our butts, which is weird, because most people have no problems talking about other bodily fluids. But butt stuff gets us all freaked out. This causes isolation. Here’s a personal example from my life: I recently crapped myself. Yup! I said it. I got some kind of GI bug...

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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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