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It’s time to make ourselves BIG in the face of illness, even while the world wants us to be small…
Last week, I had the honor of speaking at an event organized by Katy Brennan for Suffering the Silence, where a bunch of women stood in a room together and talked about how they’re living incredible lives even though they have chronic illness and disability. To be among women like me—to hear their stories, hopes, dreams—was profoundly moving. When called to speak, I changed course from reading from my book to instead read something I wrote more recently. It’s about the importance of making ourselves BIG instead of being forced to be small. Here’s my quick piece. I hope you like it! If it resonates at all, please join the conversation in the comments and share your perspective. Thanks! It’s time to make ourselves BIG as a child… and as a young woman, and – heck – even today – my parents emphasized the importance of not making trouble. of...
read morePlease take a moment to endorse me in the WEGO Health Awards
Hi! I’m doing something I don’t usually do today, and that is beg for you to tell other people you like me. The WEGO Health Awards are happening again (I’ve won a few in previous awards) and this year, I’m up for three awards. I can’t get to the finalist category without your help. Please read on for information about how to endorse me so I can move into the finalist category. One of the best ways for me to spread the word about my work is to win awards; they put me in front of huge new audiences, and that means I can help many more people. It feels weird to ask for your help, but I do need it; in the WEGO Health Awards, finalists are chosen mostly by how many endorsements they get. And we are many, babes! So we should be able to rustle up...
read moreA step-by-step process for creating a morning routine #AWAPwednesday
Do you struggle to make your mornings meaningful? Are you feeling frustrated because you’re not getting enough done early in the day, and you run out of steam by the afternoon? (I relate to that so much!) Do you want to prioritize self-care? Then a morning routine is for you, babe. We’ve been talking about this process in the Secret Club membership program, but this process is just too good to share only with my members. My meaningful morning: To create a more meaningful morning, I first review all the things I would like to do in my morning routine, and I make sure to get clear about WHY they are important to me. Here’s the list I created today during a Facebook Live video: wake up at 5:45 – so I can be sure to accomplish all that I want drink a big glass of water (equivalent to...
read moredo you feel like you’re starting over?
The other day, I sent an #AWAPwednesday email (sign up here if you’re not getting them) about “starting over” when we have chronic illness, and I think the piece belongs here, too. Here it is, copied and pasted, for your enjoyment: i’m back in the gym today for the first time in many months, and it’s ROUGH. like, tears started to flow while i was stretching. i didn’t cry from pain after my 10 minutes on the treadmill. i didn’t cry from stiffness while i did 15 minutes of yoga. i started to cry from frustration, as i realized it felt so much like i was starting over. i remember vividly what it felt like 6 months ago to hit the gym 4 or 5 times a week, doing 30 minutes of cardio and another 25 of yoga. it felt AWESOME. i felt like an athlete again, something that...
read moreThat time I went to the E.R. because I thought I was having a heart attack…and almost didn’t, because I was afraid I WASN’T having a heart attack
SPOILER ALERT: I was NOT having a heart attack. Last night, I was taking a shower when I had a sudden searing, clenching pain in my chest that took my breath away. It lasted for a couple minutes, and then got a bit better, but my left arm and shoulder and neck were clenched and sore. My chest felt tight. Was I having a heart attack? Nope. Turns out, it was a huge muscle spasm. I had never had one like that before. But WOW did it present like a heart attack. I Googled “women’s heart attack symptoms” and had almost everything on the list (minus nausea or vomiting). But did I go to the E.R. immediately? Nope. I felt scared, but not just that I was really sick—I felt scared that the staff would judge me harshly if it turned out I wasn’t having a heart attack. How...
read moreHow to talk to people about being in a huge flare-up
It’s not easy to talk to folks about being in a flare-up: being in constant pain, experiencing unyielding fatigue, spending hours on the toilet every day, having daily anxiety attacks. That’s been my life since mid-January, and it’s only just now starting to ease up. So I’ve had a good bit of practice when it comes to talking to people about being in a mysterious months-long flare-up. What’s a flare-up like for me? A fibromyalgia flare-up for me has all of the above symptoms and more. Sometimes my skin itches all over; sometimes I get rashes. A couple months ago, all of my teeth hurt. I sometimes have a ringing in my ears and a feeling of vertigo. Some days, I have ALL of these, all at once. I’m a regular party over here, right?! It’s hard to remain upbeat As you move through life in flare-up mode, it...
read moreWhat’s the secret to being as well as possible (AWAP) in spite of chronic pain and illness? Start with: Acceptance
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...
read moreA little story about the value of long-term health care provider relationships
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...
read moreNoelle Janka: Despite Chronic Illness, She’s Crafted a Career That Helps Others
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,...
read moreSometimes, you have to ask yourself to dance (a few words on the suckiness of self-judgment)
It’s mid-afternoon, and I’ve got a roaring headache. My phone just crashed in the middle of an important call. My back is sore, and I’ve still got tons of work to do—but I can tell my body needs a nap. I crawl into bed, setting the alarm for an hour later…and lie there fitfully, unable to drift off to sleep. Eventually, I get up and grab a snack and a glass of water and sit down again at my desk. Now I’m even further behind than I was before, and I still feel unrested. I’m probably going to have to work well into the evening. Or: I can ask myself to dance. No judgment See, a friend of mine helps run a women’s dance group here in chicago called DDPP: Dance Dance Party Party. The group has three rules: no boys, no booze, no judgment. Twice a...
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