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Listen Now: Jenni on Aches & Gains Radio Show w/ Dr. Paul Christo

Posted by on Oct 5, 2015 in activism, announcements, coping, featured | 0 comments

Howdy, all my fellow ChronicBabes and ChronicDudes! I’m so bowled over today. This weekend the first part of my interview with Dr. Paul Christo aired on his Sirius XM radio show, Aches & Gains… but I don’t have Sirius. So I had to wait until today to listen… and I am so humbled. Dr. Christo really made me sound great—it’s like he has a magic “fibro fog” filter in his editing booth. I need one of those! Our interview covers so many things, and that’s just in part 1: support groups and their value; the importance of a multi-disciplinary approach to pain and chronic illness management; suicide and its prevalence in our community (wow, did it get personal on that topic); sacrifices we make when we have illness and pain; my favorite support organizations; and much, much more. You can listen now to the recording of part 1, hosted at Dr. Christo’s excellent site (he also offers tons of other resources, celebrity interviews, and a backlog of his show episodes). And tune in next week, when part 2 airs at 5pm EST on Saturday, October 10. If you miss the live show, you can find the recording a few days later at his site, or come here; I’ll post that link, too. Most importantly, let me know what you think of the interview! I would love to hear your thoughts and experiences, so jump into the comments below and share your story. Thanks! UPDATED: Part 2! The link to part 2 of my interview with Dr. Paul Christo is now live, and I am so honored and grateful to have had the opportunity to speak with him....

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Listen Now: The Ultra-Awesome ChronicBabe Playlist

Posted by on Sep 21, 2015 in announcements, coping, featured, inspiration, self care | 0 comments

Because I love you, and I love music, and you love music: The Ultra-Awesome ChronicBabe Playlist, hosted at Spotify.   It’s packed with inspirational tunes; dance numbers; songs you’ll know every word to (and I hope you’ll sing along in the shower or car), hip hop, country (and western!), techno, acoustic… it’s just packed. Also: It’s 26 hours long. 26 hours! So if you’re having the world’s worst flare-up, you can just hit play and you’re good to go for a full day and night. Bask in it. Let it lift you up. Never used Spotify before? It’s fun! And it’s free. Here are the basic steps I recommend: If you don’t already have an account, sign up here. Click on the green “Download Spotify” button to add the app to your laptop or desktop. (Alternatively: Download the free Spotify app for your smartphone.) Log in to the app. Connect with me (my username is chronicbabe, natch). Once we’re connected, you’ll be able to see my public playlists, including The Ultra-Awesome ChronicBabe Playlist. Click on the black-and-white “Follow” button for the playlist, and VOILA: You will now be able to access the list under the “Your Music” bar on your app, no matter where you are. I know…it’s a few steps, but worth it — because once you’re in, it’s unlimited tunes for days and days....

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Join Me for Pain Awareness Month in September

Posted by on Aug 6, 2015 in announcements, featured, pain | 5 comments

It’s not often that I write about a particular chronic condition. My work here at ChronicBabe has been focused on the idea that no matter what ails you, we all share similar experiences and can use common tools to craft lives that are truly exceptional, despite chronic illness… so talking about a specific condition doesn’t make much sense. Except now. Today, I want to recognize a cause that’s very close to my heart: Pain Awareness Month. It’s held every year in September, and as someone with chronic pain, it’s an important month. An estimated 100 million Americans live with chronic pain—that’s daily, relentless, unsolvable pain. Many of us are disabled by the pain and unable to work, to parent, to socialize and more. It is a crippling burden for not just the people in pain, but all those who love and care for them: friends, family, neighbors, classmates, co-workers, health care providers and more. So many of us want to live more satisfying lives in spite of pain, and we work very hard to do so. I’m including myself in those millions of people; I’ve had pain every day since mid-1997, and I have never given up. Despite hospitalizations, passing out from pain, radical impairments and more, I’m still striving to kick a$s in spite of pain. People in pain often get a bad name. We get called lazy. We’re told it’s all in our heads. People think that we should just suck it up. But if you have any kind of chronic pain, either as your primary chronic condition or as a byproduct of some other illness, you know that people in pain are the farthest thing from lazy. People with chronic pain are some of the strongest, bravest people I’ve ever known. Through my work with organizations like the U.S. Pain Foundation (USPF), I’ve met hundreds of incredible people who are helping change the stereotype of people in pain. They work hard, they play hard, they laugh so hard I almost tinkle myself. We have a blast together, because we are united by our experience and we share an instant bond whenever we meet—it’s a terrific community. Passionate, driven, creative, emotional, empowered and full of love. We need your help. Let’s band together to give our community a GOOD name, OK? Let’s work together to educate those around us about the realities of chronic pain so we can have informed and productive conversations about lifestyle, medications, legislation and more. Let’s learn to be more compassionate toward each other. If you’d like to join the movement, I urge you to sign up to be a USPF State Pain Ambassador, as I am for Illinois. It costs nothing; in fact,...

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Can We Talk About PTSD?

Posted by on Aug 3, 2015 in announcements, featured, resilience, self care | 16 comments

Last night, the far North Side of Chicago was hit by a massive storm, including microbursts that caused extensive damage. 75 trees were ripped out, roots and all, and hundreds more were severely damaged. Cars were smashed in, windows blown out. My best friend and another 6,500 people are without electricity on a 95-degree day 100% humidity stretch of days. And at least one person was killed during the story, and many more were injured. Luckily, the home I share with my boyfriend is fine. Our back porch plants are shredded, and my community garden plot down the street is severely damaged. But they’re just plants; they’re not people, or pets, or homes. You may wonder why I’m writing about this today. Here’s why: I have PTSD. In August 2008, I was living in a condo with my now-ex-husband about a mile from where I live now. The same thing happened: one minute the skies were gorgeous, the next, my ears popped, and an intense sound swooped down on our home. Having grown up in hurricane territory I knew this wasn’t just a thunderstorm; I knew it was a tornado or something similar. I locked myself in a closet, holding the door shut, while our building was practically destroyed around me. I thought I was going to die. I prayed and thought about people I loved. When the storm finished, I climbed out of the closet to see complete destruction. Long story short: Our home was ripped apart, flooded, and we spent the next seven months rebuilding. We had a ton of help from so so many people, in person, online, through financial donations and prayer and words of support. We were incredibly lucky to have all that help. It wasn’t just physical rebuilding. I was damaged mentally from the experience. If you’ve read about PTSD, you may know that it is commonly triggered by life-threatening experiences. It’s common among people who return from war, and among people who have been severely abused — and people who have faced death. I have faced almost certain death three times now in my life, and I can say that the previous two incidents can’t hold a candle to what happened in that storm. The side effects have impacted my life for seven years. Slowly, and with a ton of help from professionals and medication and meditation and desensitization, I have been able to handle my PTSD. I still have symptoms during big storms, and when I see photos of storm damage. But it hasn’t been severe. Then last night happened. And I was triggered so hard. Joe and I were driving when it happened, and we pulled over to a safe...

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AWAP Wednesday: What Will You Bling? Contest Winners!

Posted by on Jul 15, 2015 in activism, announcements, coping, Creativity, featured, inspiration | 1 comment

It’s AWAP* Wednesday, and today I have a very special edition of our weekly conversation about being as well as possible in spite of illness! A couple weeks ago, I announced a contest to bling out your assistive devices/medical implements/sick chick stuff. And you did not disappoint! Many of you shared some beautiful creations, and I’m just tickled pink at your creativity and courage. It takes strength to be so public with your health challenges, and it means a great deal to many people to see you having fun with what is otherwise a crappy situation. I applaud everyone who participated in the contest!   The winner: E. B. Fromkes of CFS Warrior Art Babes, this chick has got glitter running through her veins and paint coating every surface of her life. Her life is art, and she does not let multiple chronic illnesses stop her from creating. I absolutely adore her spine jacket, which she showed off on E.B. Fromkes on Instagram as her chosen outfit for a doctor consult. I’m also a big fan of her spoonie crown, which is a simultaneously vivacious and dark visualization of reclaiming life in spite of illness. (If you don’t get the spoon reference, check out my pal Christine Miserandino’s Spoon Theory, which lots of us find hugely relatable.) One of the great challenges we face as ChronicBabes is expressing our experience without putting people off. Yes: It is not our job to make people feel comfortable with our experience. And: It’s still great when we can find a way to express our difficulties and struggles without being a drag. I think this artist has got a fabulous approach.   Runner-up: Amy Defalco This ChronicBabe shared a couple pics of her migraine mask on Facebook, and I love her brave, public approach to handling symptoms at work. She says: “The back story is that I’ve had migraines since I was a kid. Daily, chronic cluster migraines for about 12 years now. No meds, remedies, weird stand on one foot things have worked. This is something I wear at work, I was telling the girls about your contest & they chided me into entering. They think it’s a riot. The words “Go Away” are directed at the migraine but let people know I need space as well.” You’ve gotta love that she’s not shy at work, and that her co-workers actually encouraged her to make her art even more public! Love it.  We had many more entries, and I wish I could send prizes to everyone, but then I might run out of glitter. OK, sure, I will never actually run out of glitter… I still want to share with you pics from the many babes who...

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You Know Someone With Fibromyalgia. Promise.

Posted by on May 12, 2015 in activism, announcements, featured | 15 comments

Every year on May 12, thousands upon thousands of people and organizations honor National Fibromyalgia Awareness Day. We wear purple, and we write blog posts about what it’s like to experience the condition, and we talk about advocacy efforts. And every year I feel like that effort falls flat. It’s nice to have awareness, but often, it’s just a blip on the radar. Sure, now you’re reminded fibromyalgia exists. But what’s next? It’s just one of hundreds of national health observances that seem to come and go without much impact. This year, I’m trying something different. Something simple. Fibromyalgia impacts an estimated 10 million people in the U.S., and about 3%-5% of the world’s population. Odds are very, very good that you know someone with fibromyalgia, whether they’re vocal about it or not. I am one of those people. If you think you don’t know someone with fibromyalgia, hold up—you know me, right? Even just a little bit? Well, I have fibromyalgia. So let all your preconceptions about the condition and about those of us who have it fall away… now’s your chance to REALLY understand what it means to live with all the symptoms we endure. Ask me anything. Ask any other person you know with fibromyalgia what their experience is like. Ask how you can help. Ask where you can learn more. Ask how you can join the movement for more research. Ask how you can help remove the stigma. Seriously: Ask. Post a question in the comments below, send me an email, text me, post a question on Instagram… anything. Just ask. The more we know about the experience, the more normalized it becomes… and the easier it is for those of us living with fibromyalgia to ask for—and receive—the accommodations we need and deserve. And when we get that understanding, compassion and accommodation, we’re able to be more active, productive members of society. We thrive. We give back. I am living proof of that, y’all. Today’s the day: Ask. Heck, ask me ANY day and I’ll tell you what you want to know. And those of you with fibro? Tell. Today’s your day! (Heck, any day is your day!) Share your experience. Offer to answer questions. Post links to helpful organizations like Fibro Center, U.S. Pain Foundation, the National Fibromyalgia Association and the National Fibromyalgia & Chronic Pain Association. Ask folks to sign the petition for a cure. Be a resource. That’s it… super simple. And let’s make awareness of fibromyalgia and its impacts a year-round thing,...

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