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What’s the secret to being as well as possible (AWAP) in spite of chronic pain and illness? Start with: Acceptance

Posted by on Feb 21, 2018 in acceptance, ChronicBabe Basics, coping, featured, practicalities, resilience | 2 comments

Sometimes, we need to come back to a foundational practice, one which I’ve learned is just that—a daily practice. I’m talking about acceptance, one of the most powerful tools we ChronicBabes have for staying AWAP.   When someone asks for my secret to thriving, I usually respond with “acceptance” I was talking to a loved one earlier today, and he thoughtfully asked if I was out of my flare-up yet. The way he put it, actually, was “are you feeling as well as possible?” “Yes,” I replied. “So you’re not having as much pain as a few days ago, I take it?” “Well, actually I have more. But I’m still AWAP,” I said. A brief moment of quiet passed between us. “But you were traveling last week—didn’t the pain keep you from going?” he asked. “No, I mean…the way I figure it, I’m either going to hurt at home alone, or hurt in a fun vacation house with 10 friends, so I still went on the trip.” Another moment of quiet. “If you figure out the secret to being AWAP even when you’re hurting so much, be sure to share it,” he asked. “It’s acceptance, all the way.” But what is acceptance? Acceptance is all about getting real with all the things that ail you, and looking them right in the eye and saying “I see you, ailments. I know you are not going away, or if you are, I have no control over when that will happen… but I’m not going to let you stop me.” It’s about saying the serenity prayer on the regular: “God (or Goddess, or Universe, or…), grant me the serenity to accept the things I cannot change, courage to changes the things I can, and wisdom to know the difference.” Acceptance is not letting yourself Google the same symptoms over and over and over post-diagnosis, hoping to find a new “fix” and driving yourself crazy. The practice includes asking for help when you need it, even if it’s more help than usual, and not apologizing for needing help. Acceptance is allowing yourself time to grieve because this shit is super hard. Practicing acceptance means doing all your regular check-ups even when your calendar is crowded with other health care appointments, because you know neglecting things like your teeth or your boobies could mean developing EVEN MORE health issues and who needs that? Acceptance is not trying to recreate the wheel every day. Instead, it’s creating routines that take into account all your needs, so you can do all that’s possible to make the most of your day each day even if you’re hurting or flaring up. It’s knowing that even if you feel...

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A little story about the value of long-term health care provider relationships

Posted by on Feb 14, 2018 in caregivers, coping, featured, health care providers, relationships | 4 comments

Hi! It’s been a little while since I posted on my blog; the winter holidays kept me busy, I’ve traveled a lot since then, and I’m coping with a handful of acute health issues…it all sapped my blogging mojo! But I’m slowly easing back into it. Today, I’m thinking about how valuable it is to have kick-ass health care provider relationships. I want to talk about why it’s important, and how you can cultivate your own. A handful of symptoms means a handful of health care providers 18. That’s the number of health care appointments I’ve had so far this year. 18! The high number reflects a variety of things: an injury that’s required a few follow-ups and special procedures; maintenance appointments like a mammogram; check-ins with my pain psychologist; a trip to a compounding pharmacy; and physical therapy appointments to try to turn around my flare-up. It’s been overwhelming, and it’s SO HARD to get any work done when I’m constantly running around! Not to mention the hospital parking fees I’ve racked up. Harrumph. It’s enough to make a babe grumpy. Across those 18 appointments, I’ve seen 10 different health care providers. Some were brand-new to me, and WOW is it exhausting to have to explain your whole history to a new person. Especially when you’re asking them to diagnose a tricky issue. (Like one thing I’ve had for the past week: extreme sensitivity in all of my teeth. Weird!) But some of those health care providers have known me as long as 25 years. It’s those appointments that really help keep me sane during this crazy-making time. Long-term relationships matter I’ve talked before about ways to strengthen your relationships with doctors and other health care providers. I’m sure you can guess some of the reasons, but let’s review: You don’t have to re-tell your whole medical history at each visit They can spot patterns in your symptoms you may not see You cultivate a sense of trust…in each other Your medical records are all in one place (or at least focused in a couple places) When you’re a little late, or they need to reschedule, it’s easier to manage and you can cut each other a little slack You feel more comforted and safe with them These are just a few of the reasons why long-term health care provider relationships are so important. Here’s a quick story about another reason why: My pain is unexplainable and scary, but my HCPs help I mentioned that all of my teeth have been hurting. For a few days, I tried to be patient and hope it would improve, but I finally gave in on Sunday and went to immediate care....

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Noelle Janka: Despite Chronic Illness, She’s Crafted a Career That Helps Others

Posted by on Nov 28, 2017 in featured, inspiration, Kick-Ass Sick Chick | 0 comments

It’s always great to meet a fellow ChronicBabe who’s managed to craft a career despite serious illness. Noëlle Janka is that kind of woman; she lives with chronic lyme disease and a couple other health challenges, but she’s still managed to find a way to work and help people. We interviewed each other last week about our work and other pursuits. Here’s my interview with her…I hope you’ll find it interesting and perhaps get inspired! One of the things Noëlle offers is group coaching, which I think is a great idea for those of us who have mega-high health care costs and limited money to spend on other things. She also has a thriving yoga practice. Now, before you flinch—yoga kind of gets a bad rap—you should know that we talked a lot about how yoga is more than just the poses. It’s a practice that includes mindfulness, breathing, awareness, grounding…it’s so fully encompassing, and customizable for your needs. And Noëlle also interviewed me! Here’s that interview. A Kick-Ass Woman with Chronic Illness Know another cool woman with chronic illness who I should interview? Let me know – jump in the comments below to share your ideas. Thanks! …and if you want to read another interview with someone super-cool, check out my conversation with Mary England from...

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My hero, on a step ladder (sometimes we just need a little validation)

Posted by on Nov 8, 2017 in caregivers, featured, relationships, Uncategorized | 19 comments

Last week, I had a super-aggravating experience related to what my husband, Joe, and I jokingly refer to as one of my “fibro super powers.” But luckily, it ended in the kind of validation I think we all need.   Every sound is so loud! Since I developed fibromyalgia 20 years ago, I have become extra-sensitive to everything—especially sound. I remember those first years post-diagnosis, when I would get frustrated about the sounds my neighbors made. I found myself plugging my ears every time an ambulance or fire truck went by, and started carrying ear plugs to wear whenever I traveled. And it’s not just the sound itself; the bass of loud music or trucks going by is also really tough on my system. And when you live in a huge city, it’s hard to escape. My amazing hearing is a terrible “super power” to have! But no one around me seemed to experience the same sensitivity; in fact, when I would complain about the issue to people I was close to, I was mostly met with blank stares, or flat-out negation. “I don’t hear it, so I think you’re imagining it,” my ex would say. “It can’t be that loud if I can’t hear it, so can you just ignore it?” he would ask. Um, no. He certainly was not the only person to minimize or deny my experience; co-workers, friends, and family all did the same thing. That negation was not intentional, I’m sure; I know that none of the people who did it was actively trying to hurt me. But wow, did it hurt. I learned to keep my mouth shut, even when it was causing me extreme distress. Sometimes, I would curl up in a ball in bed, with piles of covers over me, ear plugs in my ears, and just cry. It wasn’t just the constant negative sensation of the rock music from upstairs, or the nagging hum of the truck idling outside my window. The thing that hurt most was when people would shut down my concern or negate my experience. Experiencing validation from my community Recently, I attended a retreat for women with chronic pain. Spending a weekend with a handful of women who immediately “get” your experience is powerful. During one conversation, I discovered that at least two other people there with fibromyalgia or other chronic pain conditions also live with the intense sound experiences that I have. It was amazing—I mean, I was literally amazed by how good it felt—to be heard, and to experience validation. Just knowing that someone understood my experience, and told me it was okay to be upset by it, made me feel like less of...

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The ChronicBabe book is now on sale

Posted by on Sep 25, 2017 in announcements, chronicbabe 101, featured | 0 comments

The ChronicBabe book—ChronicBabe 101: How to Craft an Incredible Life Beyond Illness—is on sale today! After a few years of work, I’m thrilled to offer the first-ever ChronicBabe book! Head to ChronicBabe101.com right now to buy a print copy or ebook, and grab all kinds of bonus materials, including: A discussion guide for book clubs A fun habit checklist A special bonus PDF about making friends with illness Full audio of all the “pep squad” expert interviews in the book 10 fun life lesson videos Swag like buttons, stickers, and wristbands …and more The ChronicBabe book is packed with resources for you I organized the book into 10 “lessons” that focus on some key areas for women with chronic illness: It all starts with learning to practice acceptance (Lesson 1) Learn to kick those bad habits to the curb (Lesson 2) It’s time to turn around negative thinking (Lesson 3) Establish healthy boundaries to create confidence (Lesson 4) Learn to love your body again (Lesson 5) Build your “team” to maximize support (Lesson 6) Strengthen personal relationships to weave a safety net (Lesson 7) Adapt your education and career to boost success (Lesson 8) Become a talented communicator (Lesson 9) Get organized: Tips, tricks, tools, and systems (Lesson 10) Within each lesson are interviews with guest experts, who bring their personal voices to our conversations about life with chronic illness. They include two psychologists, one doctor, a pharmacist, a career coach for people with chronic illness, three ChronicBabes with successful businesses, an executive coach, and a sexuality expert. In addition, I included interviews with a dozen caregivers, who provide perspective on how it feels to love someone who has chronic pain or chronic illness. These perspectives may be tough to read at times, but they help us understand what they go through. This helps us to become better partners, spouses, daughters, mothers, and friends to the people who care for us the most. Other goodies included in the ChronicBabe book: In addition, I included homework assignments in each lesson (don’t freak out—I’m not grading you!). They offer guidance and additional resources. I’ve also included some fun “pop quizzes” throughout, designed to encourage you to think differently, explore alternative approaches, and make you laugh. And in the back of the book, an “extra credit” section offers more than 350 website that I think are amazing resources. Most of all, I want you to know that the book is written from me to you—in my voice as a ChronicBabe. This is because I think we’ve already more than enough dry books about our individual chronic conditions. Don’t get me wrong, those have their place. But in comparison to what you’re used to reading, this book offers a fresh voice...

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Join me and for a book release party September 25

Posted by on Sep 21, 2017 in announcements, chronicbabe 101, featured | 0 comments

I’m so lucky to announce that my friend Tami Stackelhouse, the Fibromyalgia Coach, is hosting a book release party for me on September 25, at 5pm ET, 4pm CT, 2pm PT. So fun! Join us as we talk about what it’s like to be ChronicBabes and creatives, and how together we’ve created three books—despite having chronic illness. It’s going to be a SUPER-FUN LIVE webinar and you’ll get to see inside the book, and hear all about all the fun things Tami and I do—including all the strategies we use to stay productive even on our worst days. We’ll talk about sexuality and chronic illness; enlisting the help of your “team”; managing your time and energy; and much more. Join us! Sign up TODAY so you can secure a spot for this exciting online launch party. I can’t wait to see you...

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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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