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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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5 Reasons Why Leaving My Job and Working From Home Was The Best Decision I Ever Made

Posted by on Aug 15, 2016 in acceptance, career, coping, Creativity, featured, guest author, inspiration, pain, practicalities, resilience, self care, Work | 1 comment

This post was guest-written by Jennifer Kain Kilgore. Find her at her blog, Wear, Tear, & Care here. Hi! My name is Jen, and I’m a 29-year-old attorney, editor, writer, and patient advocate. I have spinal fractures from two car accidents that required two cervical fusions. The jury’s out on whether I’ll need more surgery. I worked in an office for three and a half years after law school. At that point I was dealing with the fallout from my first car accident, which happened in 2004 and decimated my thoracic spine. Law school happened, and then my job, and then… another accident. That second accident became a barrier to a normal life. Eventually I decided to leave my job and work from home. Here are the reasons why it was the best decision I ever made. My health comes first now. I was living the dream: I had a legal job that started at 8 am, ended around 6 pm, had great coworkers, and allowed for a life. My bosses were cool. During my second year, however, I had another car accident. The moment the pain set in, I knew I’d eventually have to leave the traditional workforce. In the year before I left I suffered from increasing pain (which caused repeated vomiting and a hernia), insomnia, loss of control of my hands, limping, muscle spasms, and loss of my ability to focus. In the end, it wasn’t worth it. Now, I telecommute from a recliner. I schedule my day around doctors’ appointments. I work a schedule that flows with when I’m feeling best. Before, there wasn’t time in the day to work on my health, so it controlled me. I am much happier.  The “What should I do?” questions wore down my family –  especially my husband. I steered every conversation in that direction because I wanted someone to say, “No, you can’t work.” I wanted someone to make that impossibly hard decision for me. My husband begged me to think about my health while I thought about finances. How could I leave without a backup plan? What if I made the wrong decision? So I did what is generally inadvisable. I started a side-hustle, working on sites like Upwork.com and Flexjobs.com to create a cushion for when I made the jump. I don’t know how I did that, because the level of pain at that point was inhuman. I think it’s because I knew that leaving was inevitable. Now, having the weight of that decision off my chest feels unbelievable. I can breathe. I can think. And with that, I can work. I’m not paralyzed. My body doesn’t rebel. The longer I stayed in the office, the more my body fought....

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I Am Sew Supportive

Posted by on Aug 1, 2016 in acceptance, community collab, coping, Creativity, featured, inspiration, practicalities, resilience | 3 comments

Post written by ChronicBabe Tracy Mooney   About a year and a half ago, I was talking to one of my sewing buddies on the phone. We both have autoimmune disorders and we were discussing the ways in which we set up our sewing rooms to accommodate our bad health days.   She said something like “It is unbelievable what we are willing to do just to keep sewing!”   I countered with “But we have already given up so much! Why would we give up something that brings us so much joy???”   As a senior editor for the quilting magazine Generation Q, I travel to buyer’s conventions like Quilt Market and VDTA/SDTA. I found myself often saying to manufacturers “You know, you can market this to people in wheelchairs, people with tremors, and people with arthritis.” Somewhere in these moments is where it became my unconscious mission to help our community keep sewing.   I realized the importance of continuing to do the things we love when faced with chronic illness. Being diagnosed with an incurable disease and facing chronic pain on the daily is incredibly difficult to process. It is so easy to fall into depression. It is so easy to give up hope.   Perhaps you sew, or love something else. Perhaps you are a runner, build models, paint, dance, garden, love woodworking, or car restoration – it doesn’t matter what your hobby is – it just matters that you keep doing it.   For me, I look for ways and products that help sewing enthusiasts modify the way they sew. This can be special glasses that help them see better, guides that fit on their machines to help keep the fabric steady, or even managing break time with ice breaks to minimize pain. What can you do to modify your favorite hobby ChronicBabe-style?   Recently, a friend of mine was experiencing a flare and found that she couldn’t join her running club. She was worried that she was missing out on social time with her friends and that they would move on without her. I suggested she look at other ways to participate. So she contacted the organizer and found they needed help setting up drinking stations. She was thrilled. She could still visit with her buds even if she couldn’t run because of a flare.   Some of my readers love quilting, but when they are in a flare don’t have the energy or physical stamina to sew. One creative ChronicBabe said she would stroke and refold her fabric collection. Another said she would sort and choose fabrics for her next project.     Be creative! Think outside the box! What is it...

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