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Noelle Janka: Despite Chronic Illness, She’s Crafted a Career That Helps Others

Posted by on Nov 28, 2017 in featured, inspiration, Kick-Ass Sick Chick |

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, awareness, grounding…it’s so fully encompassing, and customizable for your needs. And Noëlle also interviewed me! Here’s that interview. A Kick-Ass Woman with Chronic Illness Know another cool woman with chronic illness who I should interview? Let me know – jump in the comments below to share your ideas. Thanks! …and if you want to read another interview with someone super-cool, check out my conversation with Mary England from...

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Self-love: Jenni chats with Mary from Uncustomary about a powerful practice

Posted by on Nov 7, 2017 in acceptance, guest author, inspiration, self care |

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: The short answer is knowing what it’s like to be on the complete opposite end of the spectrum! I started developing multiple mental illnesses at just eight years old, and it seriously impacted my adolescence in terms of self-esteem and overall happiness. Feeling like I wasn’t in control of my body made me hate my body and myself which spiraled deeper and deeper. I finally got to a point where my symptoms were controlling my life and I knew if I didn’t at least try to do something about it, I was going to end up in a place I didn’t want to be. So I started cognitive behavioral therapy (CBT), which is one of the huge stepping stones I pivoted on and feel changed my life. I basically learned how to deal with some of the most obtrusive symptoms in my life, and by doing that I felt this mental space open up in my mind. I finally wasn’t totally consumed by just getting through the day; going from one symptom to the next… I had room to wiggle around! I could even get creative! I dove back into crafty stuff I had missed from my childhood and started documenting it. From there emerged a blog, and that blog chronicled the progress of the journey of my self-love exploration and discovery that is ever-growing. Essentially, I realized that if someone who had five mental illnesses, a palm-full of pills to take just to function, and a panic attack metaphorically scheduled on her Google Calendar could start loving the body that had gained a hundred pounds in the process (from medication side effects) and herself, that it was possible for other people in better and even worse situations. I wanted to provide my perspective in hopes it would be useful...

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3 Weird Sounds to Make When You Feel Bad #AWAPwednesday

Posted by on Nov 2, 2016 in coping, featured, humor, inspiration, pain, resilience | 11 comments

When I’m doing my morning yoga routine, I hurt. And I tend to moan and groan a little as I ease into poses. But sometimes, I get so sick of hearing myself moan and groan. And on days when I feel my depression creeping in on top of the pain and fatigue of fibromyalgia, moans and groans can make my heart hurt, too. So I came up with three fun sounds to make instead to crack myself up. I think they’ll help you, too—at the very least, you’ll have a laugh! *AWAP = As Well As Possible Now it’s your turn: How do YOU crack yourself up when you’re struggling? Tell me all about it in the comments below. Want more #AWAPwednesday? Check out our #AWAPwednesday video playlist, which has more than 100 videos packed with practical advice, lots of humor, and bloopers. Lots of 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! (Loose) Transcript: (Jenni making weird sounds) Hi! I’m Jenni Grover Prokopy of and today is AWAP Wednesday (that stands for As Well As Possible). Each week, I offer you my personal favorite tips and techniques to help you craft an incredible life beyond illness. Yes! I know you can. Subscribe to the ChronicBabe YouTube channel today to make sure you never miss another video, OK? Sometimes when I’m doing my morning yoga routine, I hurt. OK, fine – let’s be real – I always hurt when I’m doing my morning yoga. And I tend to moan and groan a little as I ease into poses. My beau, Joe, is used to this. Sometimes I feel bad, because I know it must make him feel uncomfortable to hear me groaning so much – but when I say “I’m sorry,” his response is always, “babe, don’t apologize – you’ve gotta express that pain so you can let it out.” (He is so smart!) But sometimes, even I am sick of hearing myself moan and groan. And on days when I feel my depression creeping in on top of the pain and fatigue of fibromyalgia, moans and groans can make my heart hurt, too. So I came up with three fun sounds to make instead to crack myself up. The sounds are really simple. First: cartoon horn. Ah ooo gah! Just imagine shouting that as you feel pain, instead of sighing, or moaning. Ah ooo gah! Next up: karate sounds. Hiyah! Just imagine you are bending over to pick up something and your back twinges. Instead of groaning, a little hiyah! can really hit the spot. Finally, try this one out: Hey-oh! This one is just...

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Community Collab: How do you cope with the changing seasons?

Posted by on Oct 21, 2016 in acceptance, community collab, coping, featured, inspiration | 6 comments

This time of year is the hardest seasonal transition for me. As the days grow darker and colder, I feel myself sinking into depression—and I have to work VERY hard to not let that take over. So I wondered this week: How are YOU coping with the changing seasons? Kirsten said “complaining about my knees like an old lady! nah mostly I get the lovely scarves out and bundle up a lot. Also lots of curling under my heatmat in bed lol” (which made me want to research the full-bed heating mats I’ve heard great things about…) Beannachd said “I usually get super psyched for Halloween. It is the best holiday season! But the thought of the cold and the pain has got me really down this year. I lost the entire month of August and half of September to a migraine (apparently generic Kroger brand Afrin and Flonase are NOT the brand name ingredients!!!) Took me a month and a half to figure it out. I’m still not 100%, so when the pain hit with the cold snap, I just wanted to cry. It’s been in the 70s and 80s here this week, though, so I’m laying out and baking the pain away while I can. It has helped me resign myself to sweaters and socks at night. So I am trying to get into the spirit of my favorite season – Halloween lights are up, and we may leave them up til spring! Spiderwebs and spooky things and watching Hocus Pocus and Nightmare Before Christmas – I totally want to be Sally! Mostly trying to enjoy what I can, and I’ll deal with the rest as it comes.” (which made me go pull out my halloween pumpkin, fill it with candy for the neighbors, and sneak a piece or two for myself…) Kyrie-Inn said “So much different in FL than it was in CT. Less adjustment. Miss my foliage though.” (which made me remember to appreciate the changing colors of all the trees around me here in Chicago…) Mary said “Here in Vegas the seasons don’t really change…” (which brought back fond memories of work trips there in January and February years ago, which offered me some respite from the snow and frosty temps here…) Delores said “I change the color of my blanket on the couch.” (which sounds like a dandy idea, so I went and swapped out the quilt on our living room couch…) And Laura simply said “Badly.” (which reminded me of how tough it is to cope, sometimes…) I hope this handful of interesting and fun ideas—and frank conversation about the realities we ChronicBabes face—is helpful to you. Feel free to continue to...

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Community Collab: What’s your personal mantra?

Posted by on Oct 14, 2016 in community collab, coping, featured, inspiration | 4 comments

Y’all! Y’all. You’re really inspiring me with this one. Each week, I host a community collaboration post on Facebook called Question of the Week (QOTW). This week: What’s your personal mantra? And you were not shy: + Peace is every step (that’s mine) + Arrange whatever pieces come your way. – Virginia Woolf (She was one of us) + We would never allow others to talk to us the way we talk to ourselves…. When my negative self talk is beating me up I just think if anyone else called me ugly, useless, pathetic etc. I’d throat punch them. So I can’t let myself do it either (bc throat punching myself would be hard.) + Whatever you *can* do is good enough (Abandon perfectionism and unrealistic expectations). + Breathe in the good and breathe out all the bullsh*t. + I’m. Not. Dead. This is my morning wake-up call. Life might be **** but I’m amazing. + Mine and my husband’s motto is onwards and upwards. Together is stronger xx + All you can do is all you can do and all you can do is enough (from a book of the same name) + I am one. I am whole. I am not my strengths. I am not my weaknesses. I am one. I am whole. + You gotta l-i-v-e, live! Otherwise, you got nothing to talk about in the locker room. – Maude, from Harold and Maude + A quote from Jesus’ Sermon on the Mount. It is “Each day has enough trouble of its own.” I frequently have to remind my husband and son, and myself, not to borrow trouble and to focus on the task(s) in front of me. I don’t have the time or energy to waste in worrying about how bad something COULD be. Dealing with one thing at a time keeps me sane. + You can do this. One step in front of the other. + Inch by Inch life is a cinch… Yard by Yard life is very hard… + Push out the jive, bring in the love. + It’s just what you do. – I got that from a 90-year-old man who takes care of his heavily disabled son. His son commutes to his janitorial job on the T and one day took the wrong train so every day this man waited at the wrong T stop in case his son made the mistake again. Every day. I told him he was a phenomenal father and he said, “It’s just what you do.” + She believed she could so she did + Tomorrow is another day. + You’ve got this. + I can’t. God can. Let’s go!! + Find the happy + Always forward. And then, at the end of the day, “this is life.” + Still I...

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You Don’t Need Wheels To Be A Derby Girl

Posted by on Oct 3, 2016 in acceptance, coping, Creativity, featured, guest author, inspiration, resilience | 2 comments

This post was guest written by ChronicBabe Sandra Gordon.   The Olympics has just finished and we are all sitting on our couches, thinking it might just be time to get up and do something. But then we think that’s easier said than done… or is it? I have Crohn’s disease. I diagnosed when I was 16 – quite a long time ago. When my symptoms hit, I had just achieved one of my best finishes in a 3K cross-country run, was curling regularly, was only a couple of years away from a black belt in karate, and was taking lifeguard training. Once I became ill, the most exercise I got was a quick dash to the bathroom. Six months later, things looked pretty different – in a good way. I gave up running and changed curling teams, but continued with karate, albeit at a slower pace. How was it possible? Open discussion with my sensei about what I could do and what I needed help with. I was allowed to sit down when needed and dash off to the bathroom without notice. I never got that black belt but I did have fun, and that was the point! I have been able to lead a pretty active life through good medication, diet, and surgeries (eventually a stoma in 2005). But I also know that is not the case for everyone. There is also a big difference in changing your expectations when you are 16 compared to 30 or 40. Back to getting off the couch: Now, I am a 40-something adult living in the third country in my life and working in the fourth. I don’t do karate, curling is not a thing here, and running… only for the bus. So what am I doing now? Roller derby, of course! But not how you think. I am a skating official (referee). This short essay can’t fit all the fun I have! But I can tell you life is different on the other side of sport. Behind every sporting event there are officials. Sometimes you need to be more able-bodied, and sometimes you just need to sit in a chair and understand the rules and the game. There are people who handle stats and organize players and officials on the day; they don’t have to have the most able bodies. There are also people who, before the event happens, book the hall, arrange the contracts with the teams, and arrange for sponsors and treasurers. Some of those positions don’t even require you to leave your house, but they are critical to making sporting events happen.   Non-competitive options for sport: That is where you, as a ChronicBabe, can come...

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