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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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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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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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Whatever You CAN Do is Enough.

Posted by on Sep 19, 2016 in acceptance, coping, featured, friends and family, guest author, inspiration, resilience, self care | 11 comments

This post was guest-written by ChronicBabe Catherine Richardson.   I spent the first three years of my life with chronic illness completely unaware that I even had a chronic illness. I had daily symptoms and I even had a diagnosis, but a chronic illness? Sick? No. I wondered why it seemed like I had a harder time doing life than everyone around me, and I pushed myself too hard and stretched myself too thin in an effort to try and make up for that, but it never even crossed my mind that what I was dealing with was a chronic illness. After I got so sick that my whole life fell apart, chronic illness was still a really tricky concept to wrap my head around. It seemed horribly misplaced when used to describe me, but once I knew what I was working with I was able to start to reassemble my life accordingly. Four years later, chronic illness is my normal, and along with it have come other words and terms that I never imagined would be part of my life, words like hospital, feeding tube, central line, wheelchair and disability. Nothing about any of this has been easy, but that transition from the before to the after of realizing I had a chronic illness was also when other words and terms such as self-care, management, advocate, chronic illness community and acceptance became part of my life. These words are what have allowed me to cope with the scarier ones. My heart aches for that earlier version of myself because even though she was in better physical health than I am now, she so was burdened by the feeling that this was something she had to overcome and if she couldn’t make herself better it would be her fault. If I could go back in time I know exactly what I would tell her. It’s the same thing I tell myself so often when I’m worried about not being able to keep up. It’s what I tell myself every time I wonder if my brave face is going to be brave enough, every time I feel torn between what I think I should be able to do and what I realistically can do, and every time I try not to get my hopes up too high because I never know what my body will throw at me from one day to the next, even from one hour to the next. It’s also what I told my friend a few weeks ago when she used every ounce of energy she could muster up to attend a wedding yet she still wasn’t sure if it would be enough to carry her...

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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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