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We Get By With a Little Help From Our Friends (AWAP Wednesday) – All About Chronic Illness Advocacy

Posted by on Aug 19, 2015 in activism, featured, pain | 15 comments

Last week, I had the enormous pleasure of attending the U.S. Pain Foundation‘s annual pain ambassador summit and gala. It was positively awesome. Spending a couple days surrounded by people in pain and living with chronic illness might not sound like fun to some folks, but for me, it was so fun, and so many other things: challenging, comforting, hilarious, insightful, rewarding… just to name a few. So today, AWAP Wednesday*, I want to share a few things about my favorite patient-focused advocacy organization, and encourage you to find your tribe, too. *AWAP = As Well As Possible Advocacy efforts make a huge difference Among our group of state pain ambassadors and other advocates, we have folks who are unemployed, on permanent disability. We have folks who can barely make it through the day without medical intervention. We have folks who are missing limbs, who use assistive devices, who have cognitive difficulties related to stroke. We’re kind of a mess. But we’re a beautiful mess. These fantastic people work incredibly hard to use the energy and resources they DO have to make a real difference in peoples’ lives. They take their advocacy and service work seriously, and they help people across the country get the pain treatment they need and deserve… every dang day. It’s so empowering to spend a couple days with them and learn how they work, what motivates them, and how they find workarounds to maximize their results despite health-related limitations. They get it done, people. Sometimes we need a good laugh When I spend time with my tribe of pain advocates, it’s not all serious chat about how we’re going to sway lawmakers to take our side or how we’ll teach people to take control of their lives. We also have a helluva good time. If you can’t make fun of yourself, who CAN you make fun of? And if you can’t laugh about life with chronic pain and illness, I believe you’re kind of doomed to be miserable. The company of my friends keeps that from happening. They keep be laughing, silly and joyous no matter how much I’m hurting. And they’re pretty fabulous dancers. It’s great to learn together One of the most memorable moments of the weekend for me was teaching a workshop on how to tell your personal pain story in a compelling, ally-winning way. It was a chance to get to know my fellow advocates, and teach them how to be stronger storytellers. When we learn together, we’re not just exploring techniques for advocacy; we’re also learning from each others’ experiences. I don’t know what it’s like to have reflex sympathetic dystrophy, for example, but now I have something of a better...

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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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AWAP Wednesday: On Haters and Advocacy

Posted by on Jun 17, 2015 in activism, ChronicBabe Basics, featured, ranting, relationships, self care | 42 comments

*AWAP = As Well As Possible Today’s AWAP Wednesday post is about the haters. You know the ones: The friend who gives you side-eye when you start talking about your journaling process and how it helps you cope with the unknown elements of life with chronic illness. The co-worker who periodically asks why you get to come in late on Wednesdays, even when he knows you have a standing doctor appointment early Wednesday mornings… and that you always stay late to make up for the time. The neighbor who glares when you park in your handicapped spot, most likely because you don’t use an assistive device—even though you’ve explained that you have that spot because of invisible illness. (And: the random dude in the big-box store parking lot who glares or even shouts at you for parking in a handicapped spot.) The acquaintance who, at a party, tries to explain to you and everyone in earshot that she read something online that discredits the existence of your chronic illness. The stranger who writes you nasty blog post comments because you’re just too darn happy in spite of illness. (Yea, I see you, haters!) We all have haters in our lives. Now, they probably don’t actually hate us… but they sure aren’t showing us any love, either. I have two perspectives for you to consider regarding haters: 1. They’re hatin’ because of their own insecurity, or stress, or history with illness or disability, or something else that’s ALL THEM. It doesn’t get more complicated than that. If someone knows you even the smallest bit and chooses to hate on you for doing your best even if you’re sick, well, something is wrong with them. They may be under a great deal of stress and it pains them to see you excel; they might have struggled with illness or injury at another time and resent how well you’re handling your own experience. They might have a family member with a similar illness who isn’t being very ChronicBabe-like, and they’re projecting that person’s experience onto you. They may see you and fear that they themselves will become ill, and it scares them. There are innumerable reasons why someone is a hater. And all those reasons most likely don’t have a thing to do with you—and instead have everything to do with the hater’s experience. This is where I give a shout-out do Don Miguel Ruiz, author of The Four Agreements. (I consider this book required ChronicBabe reading.) One of the four is this: “Don’t take anything personally.” Easier said than done, I know! But it gets easier with practice. When you move through life with the knowledge that most people’s actions have nothing to do with you and...

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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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AWAP Wednesday: Sometimes, You Need to Shut Up.

Posted by on May 6, 2015 in activism, featured, ranting, relationships | 60 comments

Today’s AWAP Wednesday video is not based on a question I received. It’s based on my reaction to spending so much time in the chronic illness/chronic pain community. We like to tell our stories. A lot. And I love that, most of the time. Our stories are powerful: They help us connect with others, they help us get something off our chests, they help us turn friends and strangers into advocates. That is… if we are thoughtful about when and how we tell our stories. On the flip side, when we tell the same agonizing story over and over about our chronic illness/chronic pain experience, it’s exhausting and non-productive for everyone—including ourselves. So today, in the most loving way possible, I’m asking you to shut up. (And I’ll try to heed my own advice, too!) Watch today’s video, in which I explain why we *sometimes* must simply shut up: *AWAP = As Well As Possible Now it’s your turn: Have you been thoughtful about how you tell your story, and to whom? Do you think I’m a jerk for suggesting we all need to shut up sometimes? I want to know! Join the conversation in the comments below, and share your experience. Want to watch more videos like this? Check out our AWAP Wednesday video playlist, which has more than six hours of guidance, advice, and 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! (Rough) Transcript: Today’s message is pretty simple, and pretty blunt. So I want you to hear it from me knowing I’m sending it to you with the most humility, and irreverence, and love, and joy, and compassion, and loving-kindness that I can. So with that being said, here is the theme for today’s video: Shut up. Sometimes, we all just need to shut up. I hope you’ll understand I say that to you with a lot of care and humor, but for real: sometimes we need to shut up. There are a couple reasons why I think those of us with chronic illness or chronic pain sometimes need to shut up. Reason #1: We’re telling ourselves the same bummer story over and over Sometimes we talk too much, in our brains, to ourselves, all the time, about our illness. And about how much we’re suffering and about how hard things are. Sometimes we’re repeating this tape over and over and over again, and drilling in HOW HARD IT IS to live with chronic illness… and that is not healthy. If we spend all our time focusing on the negative, we are going to feel like crap. We’re going to feel EVEN WORSE than we...

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AWAP Wednesday: How Much Should We Reveal?

Posted by on Apr 29, 2015 in acceptance, activism, ChronicBabe Basics, featured, relationships, self care | 27 comments

*AWAP = As Well As Possible Yesterday I did a kinda crazy thing. Maybe it won’t seem kinda crazy to you, but in hindsight, it was a barrier-breaking moment for me. I alluded publicly to the fact that I have a vagina. I know! Crazy! Before you get all up in arms, I KNOW it’s not crazy. It’s just that despite my openness about so much of my ChronicBabe journey, I don’t frequently mention anything to do with my girl parts. It’s not that I’m ashamed, or embarrassed, or shy… it’s just never come up. Until yesterday, when I posted this selfie:   (It’s kind of hard to read, but my caption said this: “that thing when you get your second gyne exam in two days and this time, you manage to get ultrasound gel all over your sweater. derp! #HospitalGlam #sicklookslikeme #examroomselfie #ChronicBabe” I like to poke fun at a lot of things. Like being sick, for one. If I didn’t laugh about this stuff all the time, I think I’d go crazy. I started posting pics with the #examroomselfie hashtag last year because it was fun to update people and be goofy at the same time. Then Karolyn Gehrig upped the game with her #HospitalGlam hashtag and I was super-excited — tons of gorgeous sick chicks (and dudes) started showing up in my feed. The more of us open up like this, the more “normalized” life as a ChronicBabe becomes. Just, usually, you know, when I post an #examroomselfie at the gynecologist, I don’t usually specify my location. I’m not sure why, really, I’ve just felt like it was too much information. Too intimate. Too vulnerable. And totally not fun. I don’t know what got into me yesterday. (Oh, actually I do, but that’s WAY too much information… haha see what I did there? A joke! Haha! Sigh.) One minute I was taking this goofy pic, the next I was uploading it to the world, revealing the fact that I’m having some probs in my girl parts. Which SO MANY of us do. After all, most of us own these parts. And most of us have issues at some point or another. And while I’ve watched babes with bags show off their pouches; while I’ve watched paralyzed babes show off their feeding tubes; while I’ve watched diabetic pals show off their glucose injection sites… I’ve somehow thought it was unladylike, indecorous to mention if I have a problem with my girl parts. Which just goes to show there’s always room to learn. As a ChronicBabe… as THE ChronicBabe… I believe it’s my responsibility to continue to be open, honest and willing to share much of my experience with the world, with...

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