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That 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...
read more5 strategies for facing the upcoming holidays with chronic illness
I used to really dread making it through the winter holidays with chronic illness. And I do mean “making it through”—that was the best I could hope for, never mind actually enjoying them! It felt like I had to claw my way through them. All the ways the holidays can go poorly While it felt like everyone else breezed from party to party, I agonized about how to manage my limited diet when facing big, luscious buffets packed with things I knew would not feel good in my body. I watched in envy as friends wore cute, sparkly heels, while I crammed my pained feet into clunky boots that could accommodate the wool socks my Raynaud’s phenomenon-having tootsies demand. And I never felt like I had the energy I wanted as I socialized, and when I did, I would sometimes find myself without a lot to talk about. When you’ve...
read moreMy hero, on a step ladder (sometimes we just need a little validation)
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...
read moreSelf-love: Jenni chats with Mary from Uncustomary about a powerful practice
A few months ago, I stumbled across an Instagram account that was just irresistible. Mary is a strong, creative, energetic, authentic woman talking about the benefits (and challenges) of practicing self-love, and I adore her style. She offers resources at her website, Uncustomary, including blog posts, a podcast, a fun (and affordable!) membership service, a book, much more. We had a couple conversations and now, OMGOSH are we friends. I’ve written before about how we can rock our look as ChronicBabes; this babe rocks it Every. Dang. Day. Today, she’s hosting me over at her Uncustomary podcast, and I’m hosting another conversation here, too—because we both believe women with chronic illness deserve to love themselves deeply, no matter how sick they are. And have fun while they’re at it! Jenni: You’re all about the self-love and its impact on leading a happy life. What brought you to this work? Mary:...
read moreJoin me for a celebration – November 12 in Chicago
Now that ChronicBabe 101 is published, I have a little more breathing room—and I want to celebrate with you! I’m hosting a book party on Sunday, November 12 from 1-5pm in Chicago at TLR: The Living Room. The space is wheelchair accessible, and the party will be kid-friendly. We’ll have snacks and treats and drinks and music and free swag and book signings and… it will be a lot of fun! If you’re interested, please RSVP to the Facebook event. And please help me spread the word by sharing the event on your Facebook feed, inviting your friends, shouting from the rooftops—there will be room for all ChronicBabes and their loved ones at this...
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