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Community Collab: What’s your favorite feel-good book?

Posted by on Oct 7, 2016 in community collab, featured | 5 comments

This week in our Question of the Week (QOTW)—which I post on my Facebook page—I had a little fun reading through your favorite feel-good books. I got some great ideas! Here they are, starting with mine: I keep coming back to Thich Nhat Hanh’s Peace is Every Step, which I love so much I tattooed the phrase on my arm. Joanne loves Fried Green Tomatoes at the Whistle Stop Cafe by Fannie Flagg. Kyrie-Inn loves anything by Oriah Mountain Dreamer. Laura loves Out of Africa by Isek Dinesen. Andrea loves Pride and Prejudice and Zombies by Jane Austen and Seth Grahame-Smith. and Gwynn says: Elizabeth Tova Bailey’s Sound of a Wild Snail Eating. She has an illness somewhat like mine, yet despite being unable to move for days—or rather, because of her immobility—she was able to make an original contribution to science. Beautifully written and powerful, it changed the way I see snails. I also read her description of her illness and feel less alone. Did we miss a book you just adore? Have an idea for a future QOTW? Add it in the comments below!...

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How to plan for a future with chronic illness #AWAPwednesday

Posted by on Oct 5, 2016 in acceptance, coping, fears, featured, practicalities | 0 comments

“What if?” can really haunt us. When we live with chronic illness, every day is full of surprises, and sometimes those surprises sideline our lives. It makes planning for our life ahead – in spite of chronic illness – very challenging. But I have a simple concept for you to consider in today’s video that I hope will help you get over the “what if” challenge and make plans anyway.   *AWAP = As Well As Possible Now it’s your turn: Do you get stuck on “what if” sometimes? Have you ever created a contingency plan? 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: But what if my feet hurt and I can’t wear cute shoes on my wedding day? But what if I don’t sell enough books to make a down payment for a new car? But what if? What if? Hi! I’m Jenni Grover Prokopy of ChronicBabe.com 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? “What if?” can really haunt us. When we live with chronic illness, every day is full of surprises, and sometimes those surprises sideline our lives. It makes planning for our life ahead – in spite of chronic illness – very challenging. But I have a simple concept for you to consider today that I hope will help you get over the “what if” challenge and make plans anyway. Everyone Has “What Ifs” Here’s a revelation. You ready? Everyone – and I mean EVERYONE – has “what ifs” in their lives. People with huge amounts of money have “what ifs.” People who are broke face “what ifs.” Folks who are perfectly healthy have “what ifs” that keep them up at night. We ChronicBabes are not alone with feeling “what if?” Over and over, I hear from women with illness who are afraid to plan, because they’re worried about “what if” this or that happens – and they consider it a trait of those with chronic illness. They often forget they’re not alone with this challenge. Remembering that everyone worries about what may or may not happen in life can help us stay calm, and find the courage to...

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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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Community Collab: How do you de-stress?

Posted by on Sep 30, 2016 in community collab, coping, featured, self care | 0 comments

Some days, we just need a little help to de-stress. Oh, what am I saying?! Every day we need to work to de-stress! So this week, our community collab post includes tons of things y’all love to use to de-stress. Personally, I like a hot bath, a lake view, some classic sci-fi, a little bourbon or some hot tea, some nice hand lotion, a great playlist, or meditation. Here’s what you offered (I got a lot of ideas!): Move a muscle, change a thought. Oh, and dogs. Sunshine and bare feet on the grass. If I can’t get out of bed then it’s binge-watching anything good. Cannabis, hot tubs, music. The beach. Salt air. Sun not necessary. It cleanses my soul. Something so large and powerful. I feel closer to God. I have to admit – today requires a Xanax. Hot tea & some chocolate, liberally apply a cat to my lap with my feet elevated and watch some distracting tv/movie or read. If I can’t sit, then some favorite music to move around to as much as I’m able that day. Hugs my critters. Watch a documentary (new info takes my mind off of what is making me antsy). Crafts. I have a chaise lounge in my backyard and I love sitting in it with a book or magazine. First go-to: fill the tub with sea salt and a few drops lavender essential oil, turn off the lights, candles, candles and candles and Vivaldi’s Four Seasons. I also love doing meditation or just listening to my iPod and a good book at Montreal’s Botanical Garden, literally a few minutes walk or 1 bus stop away on low spoon days. Epsom salts bath, then some restorative yoga. Unless it’s a really bad day and I can’t get in and out of the bath, let alone up and down off the mat. Those days it’s funny shows on Netflix or something. The Big Bang Theory is my happy place. It allows me to forget the pain for a half hour. I also enjoy guided meditations on YouTube. They are a huge help. On good days taking our kitty for a walk in the nature trail nearby. Being in the woods always restores my spirits. Meds, nap and read. Sitting under a shade tree looking out over any body of water. Taking a nap with my puppies! A nice long, hot bath and some gentle yoga usually help me destress! Even with this achy body, stretching is like meditation to...

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If you’ve ever talked about “spoons” or called yourself a “spoonie,” take a moment to help out its originator, Christine Miserandino

Posted by on Sep 29, 2016 in announcements, featured, friends and family, guest author | 5 comments

by Linda Kaserman, admin for Bydls.com (editor’s note: Christine is a long-time friend of mine, and I hurt so much for her right now. She has done so much for our community and while I almost never post things like this, I am in big favor of supporting her in this time of crisis. xo, Jenni) Christine Miserandino, health advocate and author of The Spoon Theory, has had a really tough year. Christine was due to deliver a beautiful baby girl in March 2016. She was hospitalized after suffering months of constant nausea and vomiting, then weeks of renal failure and trying to keep the baby to term. On January 26 she had a c-section to deliver her stillborn daughter. This heartbreaking and soul-crushing experience affected the whole Spoonie community, too. Christine reached out for comfort and assistance in getting through this devastating event in her life. The response was amazing; she received so many responses of encouragement, of support and sympathy, and lists and lists of resources to help her climb out of her depression. While living with this grief, Christine faced serious jaw surgery. Christine’s teeth are literally falling out of her mouth and she’s needed six teeth extracted, four root canals, and too many fillings to count. The effects of 20+ years of steroids, plus many months of throwing up many times a day during her pregnancy, plus saliva issues from Sjogren’s, have taken their toll. Christine literally lost her smile – well, she still has a few teeth in the front. Plus, there are more dental surgeries and repair work for her mouth and more huge bills to come for Christine’s smile. Dental surgery, implants, and dentures don’t come cheap. The financial aspect of all of this has given her a new symptom: panic attacks and anxiety.  The events I’ve described have been physical, mental, and financial. There is a mountain of hospital bills already. The amount is staggering – upwards of $50,000. Christine and her parents are using their credit cards, too – and those are nearing the max. At the end of the day, Christine is a Spoonie, too, and after pouring her life into helping us all, she needs us to help her by giving a little back. Christine finally allowed her friends to ask the chronic illness community – all her fellow spoonies – for help: We’ve set up a page for donations and you can read her entire story at her GoFundMe page: Help Christine Smile. Every little bit helps and Christine would be so thankful for your donation. We’ve also set up a Facebook page where you can “like” us and offer support and share her story. Please help. Christine is one of the original chronic...

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Laugh, ChronicBabe!

Posted by on Sep 26, 2016 in acceptance, coping, featured, friends and family, humor, inspiration, resilience | 3 comments

This post was guest written by ChronicBabe Elizabeth A. Delisi.   “He who laughs last, laughs best.” Famous saying…I don’t know who coined the phrase. I suppose it could be interpreted as a courageous act – you know, “Laugh and the world laughs with you; cry and you cry alone.” And there is no place more needing of a laugh than when a ChronicBabe is fighting a chronic disease. My dance with disease began in January of 2010, when I pointed the remote control at the television and noticed my hand was wobbling up and down. What the heck? The trembling in my hand continued to get worse, so I saw a neurologist and was diagnosed with Parkinson’s Disease in August of 2010. That was the day that my life, and my future, changed. My sister, who had accompanied me to the doctor, asked me how I felt about the diagnosis. I said, “I feel numb.” And to tell the truth, that feeling lingered for some time. I felt fine other than the tremor in one hand…so how could I have an incurable disease? Well-meaning people tried to get me to join support groups, but I turned them down. I was struggling with the diagnosis as it was. I was afraid if I saw people who were worse off than I was, farther down the disease’s road, I’d give up all hope. My attitude toward Parkinson’s started to change when I read three books written by a fellow Parkinson’s sufferer, Michael J. Fox. He spoke of how the disease gave him a chance to restructure his life and his priorities, to look at all the positives he had instead of focusing on the negatives. His words struck a chord with me, and I figured if he can be positive, so can I. It was easier said than done. The symptom that bothered me most wasn’t the tremor, the slowness of movement, the stiff muscles, the fatigue, the weakness, or the inability to focus. I could have laughed at them. No, my least favorite symptom was a nasty case of anxiety that popped up frequently, in all sorts of situations. And it was hard to laugh when I felt an impending sense of doom hanging over my head. But I had a husband, children, and grandchildren. I needed to do more than put on a brave face for them. I had to accept what I couldn’t change, and try to be light and happy as much as possible. The easiest way for me to project joy was to make what the kids always called “Mom jokes.” My husband, Dan, had “Dad jokes,” too, but his were of a different character....

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WE’RE NOT DOCS!

Info posted here should not be considered medical advice; it's not intended to replace consultation with physicians or other health care providers. 

Every Babe needs to find her own path for achieving optimal wellness. While we do tons to help guide you, it’s up to each of you to make well-informed choices and live with the consequences. ChronicBabe.com assumes no liability or responsibility for stuff that goes wrong.

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Take what you like from this space, and leave the rest. Use what you learn to make your life better. Be responsible for your own choices. And please don’t sue us. XO!

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