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How to help your friends talk about THEIR illness #AWAPwednesday

Posted by on Oct 12, 2016 in featured, friends and family, relationships | 0 comments

A lot of us are blessed with amazing friends who really want to take care of us. But sometimes, although they mean well, they cause themselves a little harm. Let me explain.  We’re sickos. We have chronic illness issues all the time, right? Our friends know that. So sometimes, they decide to NOT tell us when THEY are feeling sick. This is because they think their illness isn’t as bad as ours. Or because they know we have to talk and think about illness all the time, so why add to that? But this is WRONG, babes. We need our friends to talk about their experiences! Today’s video is a great one to share with them so they are reminded that we care. *AWAP = As Well As Possible Now it’s your turn: Have you ever had a conversation about this challenge with a friend? How’d you get them to talk to you? 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 on the phone) Oh, why didn’t you tell me? Because you thought it wasn’t as bad as what I have? Babe, tell me next time, OK? I can help! (Jenni looks into camera with face) 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? A lot of us are blessed with amazing friends who really want to take care of us. But sometimes, although they mean well, they cause themselves a little harm. Let me explain. We’re sickos. We have chronic illness issues all the time, right? Our friends know that. So sometimes, they decide to NOT tell us when THEY are feeling sick. This is because they think their illness isn’t as bad as ours. Or because they know we have to talk and think about illness all the time, so why add to that? But this is WRONG, babes. We need our friends to talk about their experiences! First and foremost, because we are PROS. We know so much more about the healthcare system than they do, so we can help them through challenges and make their experience go easier. And we can help...

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How Losing My Baby Saved My Life

Posted by on Oct 10, 2016 in acceptance, coping, depression, featured, guest author, pain, resilience | 5 comments

This post was guest written by Dany Barrett-Santaniello.   The mysterious purple rash appeared on my upper right thigh about four months into my pregnancy. Here I was, forty-one and doing the seemingly improbable: I was having a baby! Previously, I had had a miscarriage while on vacation with my husband and three teenage boys, but this time the nurse had said those magic words: “I think this one’s planning on sticking around!” My elation was insatiable and I was in love with this baby, this boy, we had found out. When I showed the rash to my husband, he noted that it was beneath the skin and said it was probably hormone-related. I was incredibly tired (hey, pregnant lady in her forties, what do you expect?), my body hurt and the pregnancy began to get very arduous. I reminded myself that I was twenty-seven when I had my first child, so hey, forties and pregnant, suck it up! Nothing seemed to be out of place : swollen joints, but regular blood pressure, normal heartbeats at check ups, my boy was growing strong!   During the sixth month of my pregnancy, on a night when my husband was traveling, I felt an internal tug, a feeling that woke me out of a comatose-type of sleep. The pain was so intense that I could not sit up and it traveled down my right leg. After regaining my breath and bearings, I called my obgyn and received the news that as long as there was no spotting (Thank you, God, no spotting!), it was probably leg pains and I should rest tomorrow. I called into work and rested. The next day, my husband returned home. I had spent the day resting and was ready to return to work as an eighth grade English teacher. I hadn’t felt the baby move, but I tried not to be too concerned. That boy had to sleep sometime, right? Right?! The next morning, I started to feel pains deep in my womb as if the baby were pushing against my cervix. I went to work and was talking to a colleague when the pain became so bad that I had to brace myself against the door frame. He asked me if I was ok, and I assured him that I was. During the last period of the day, I was giving instructions to my students when I was overcome with what I realized were labor pains. I called the main office and they had a teacher cover the end of my class while I called my doctor and began the hour drive to the office. I started to intuitively breathe in short bursts and drive. I...

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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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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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