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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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Join Me for Pain Awareness Month in September

Posted by on Aug 6, 2015 in announcements, featured, pain | 4 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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AWAP Wednesday: Let’s Get Real.

Posted by on Jul 8, 2015 in acceptance, coping, featured, pain, ranting, resilience | 42 comments

Today’s AWAP Wednesday video is a moment for us to connect and commiserate about the realities of life with chronic illness… and acute illness and injury! I hope you enjoy a moment of REALNESS from your humble Editrix Jenni… it was a but emotional but I believe in honesty and openness. Watch today’s video, in which I explain what’s been going on at ChronicBabe HQ the past few weeks: *AWAP = As Well As Possible Now it’s your turn: Have any good fart jokes to cheer me up? How are YOU managing in spite of setbacks? I’m ready to hear it ALL. Join the conversation in the comments below, share your experience and ask for advice from our community. Want to watch more videos like this? Check out our AWAP Wednesday video playlist, which has almost seven 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!...

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AWAP Wednesday: Contest Edition! What Will You Bling?

Posted by on Jun 24, 2015 in acceptance, ChronicBabe Basics, coping, featured, inspiration, pain, resilience | 12 comments

Howdy, babes! It’s a great day to be AWAP… As Well As Possible. Today, instead of a video, I have a contest for you… and it’s going to be a blast! Meet my new boot:   This boot and I are going to do a lot of walking, because I’ve got a bum foot that needs protection. I’ve been pretty sad about having to wear a boot. It limits my activity, and less activity means less exercise means more fibromyalgia-related pain, fatigue and emotional flare-ups. Ugh! So I decided to make my boot more fun to wear. I blinked it out, covering it in sparkly gems I got at a craft store. I’m pretty pleased with the results! Reactions to my blinged-out boot have been mixed. One of my docs took a picture of it today; another one giggled over it throughout an appointment. Health care providers think it’s a gas. Many people throughout the day have told me they love it, which really brightens my attitude. A couple people have looked at me sideways. Harumph. Guess that’s why we have chocolate and vanilla (I’ll take some of both, please, with sprinkles). I know many of YOU also have to wear stuff like a boot, or brace, or use a walker, or a cane or wheelchair. Some of you use them part-time; some of you use them full-time. Here’s the thing: They are kind of a bummer, but they’re much less of a bummer if you bling them. Contest: What Will You Bling? Here’s the deal: I want to see how YOU bling out your devices. So I’m hosting a two-week contest to give you a chance to win some fun prizes. Rules: You must post at least one photo of your blinged-out item on a social network, including: Instagram, Pinterest, Facebook or Twitter. (You can post more if you wish, but your chances won’t increase just by posting more pics.) You must hashtag the images #chronicbabe and #whatwillyoubling. You must follow ChronicBabe on at least one of those social media platforms. (Wait, you don’t already? Shame on you!) Your blinged-out item can be something you decorate just for this contest, or something you have decorated in the past… but it must be your work. Prizes: I will review everyone’s contest entries each day until July 7, and on July 8, I’ll announce the winners. Prizes will include a variety of craft materials you can use to add more bling to just about anything. This could include paints, nail polishes, gems, stickers, washi tape and more. You must be willing to give me your mailing address if you win. I am happy to ship internationally. Remember: You must post...

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How to Gain Perspective on Your Life with Chronic Illness: Make a Friend Who Gets Sick

Posted by on Jun 10, 2015 in coping, featured, pain, resilience | 16 comments

Yes, you read that right.  I spent most of the day feeling kind of sorry for myself because I’m in such pain. It’s not uncommon for me to have daily pain—sometimes extreme—but for some reason, today I am not feeling as emotionally strong about it. Then this afternoon, I bumped into a friend who gardens at the same community garden as me. She’s part of a beautiful family, a collection of lovely people I get to see almost every day. They love the garden; they bring their kids there to play, multiple times a day. They offer advice, and share extra plants, and generally have a terrific attitude. I feel lucky that I’ve gotten to meet and know them this season. But today, I could tell something was different. I approached her, and her face looked so tired. I’m sick, she explained. Very sick, very scared.  She tapped her chest. Leaned toward me. Spoke haltingly. Words failed her. Out of her pocket came her phone, and then she was showing me photos of her CT scan paperwork. My heart dropped into my stomach. Cancer. Lung cancer. This is a friend whose last name I don’t know, whose native language I don’t speak. She’s my garden friend. I like her so much, but in many ways I barely know her. I reached to hug her anyway, and we held each other tight. Her husband walked over to join us, and I could see the pain in his face. We wait; more tests tomorrow, he said. We wait, he repeated. He translated her words for me: Pray for me. I held my hands in prayer to my chest, and showed them I would pray. They parted, their kids making loud, hilarious kid noises and playing among the plants on their way to the garden gate. And I quietly cried while I tended my garden plot. I don’t believe it’s valuable for us to focus on who is sicker in a friendship. It’s a losing game to compare notes to see whose suffering is worse.  But in this case, she’s got me beat. New to this country, barely able to speak english… how the hell will she navigate our health system? Who will be her advocate? I pray not only for her to be well, but also for an accomplished translator to help them through their journey. And whoa, reality check. So I’m sore and tired. Yea, it’s unfair. It sucks. But it could be worse. Knowing what she’s facing puts things into perspective. So, I’m over my pity party tonight. I don’t have time to feel sorry about my own pain. I need to focus on being as strong as I can be, and keeping...

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AWAP Wednesday: How to Talk About Sex and Chronic Illness

Posted by on May 20, 2015 in caregivers, ChronicBabe Basics, fears, featured, pain, practicalities, relationships, sexuality | 6 comments

Today’s AWAP Wednesday video comes from a question I received from a fellow ChronicBabe: How do I talk with my partner and ask him to initiate the lovin’ and everything in between, when his attitude is “don’t touch the fragile flower lest it hurt her”? I’m so tired of it feeling so one-sided, it makes me feel like he’s not into me. Watch today’s video, in which I get… well… pretty specific with my recommendations: *AWAP = As Well As Possible Now it’s your turn: How have you handle the sex conversation(s) in your relationships as a ChronicBabe? What’s worked? What hasn’t? 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: Great question! I’ve experienced this before, and I likely will again, as I suspect many of you have. When we have a partner who sees us in pain, suffering, it can be hard for them to relax and initiate—and participate in, with gusto—sexual activity. It’s common for our partners to be concerned that they may hurt us. This requires, in my experience, a gentle conversation beforehand. In this conversation, I usually express how I’m feeling that day. And I get specific, saying things like “I would love to make love to you, but I am having a lot of gastrointestinal pain, so no penetration, OK honey?” Or: “I really want to be close to you right now, and I feel pretty good, but I think it might be best to not be focused on achieving orgasm today because I took some meds that might impede it.” Or: “My skin is feeling extra sensitive today, so while I want to be intimate with you, I need you to shave your face first so your stubble doesn’t hurt my skin. Could you do that for me please?” When you couch these conversations in the framework of “I want to connect with you… I want to be intimate with you… I love you…” it makes it easier for your partner to hear you and understand, and to comply. Timing is also an issue. It might feel like it’s breaking the mood if you’re making out and then you start to take your clothes off… and then pause to explain your needs. But you’ve got to do it! The alternative is NOT explaining your needs, getting even more hot and heavy, and then having to stop mid-session because your partner accidentally did something to hurt you. That would suck....

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