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Stone soup: How to create something from nothing when you have chronic illness

Posted by on Oct 31, 2016 in coping, Creativity, guest author | 10 comments

This post was guest written by Therese Kay. What is Stone Soup? Stone Soup is created from “nothing.”  Several variations of this old folk tale exist, but here’s the gist:  A couple of hungry travelers venture upon a town asking for food.  The townspeople refuse to feed them, claiming that all their food has been eaten or needed.  The travelers convince the town to feed them by making stone soup.  They build a fire and ask for a pot.  Filling the pot with water and a stone, they proceed to “cook.”  At this point, he travelers say, “It’s wonderful and we’ll share!  We just need a few things to make it delicious.”  A carrot, some seasonings, a bit of potato… you get it.  Remove the stone, and – Voila!  Soup!  The travelers tricked the villagers into sharing their food and they created a tasty and nutritious soup to share with everyone. Assess Your Soup Pot Hungry for some soup?  A tasty and nutritious life?  Let’s get busy!  Yes, you may only have a stupid stone and you’ll have to use one of your precious spoons to do it, but the results will be worth it! First, what’s in your soup pot?  Just that stupid stone?  Mystery ingredients?  Gross stuff? Take a full inventory.  Be sure to scour all of your “shelves.”  You probably have ingredients hidden about that could make life pretty tasty.   Skills?   Resources?   Friends and family?   Medical team?   List them all.  Sometimes we forget about some ingredients.  The limit of what you can add to your soup is your imagination – and the imaginations of the people who we allow to add to our soup! Get Others to Add Ingredients In order to make a nice soup, we need a bit of help.  Very few of us have all of the ingredients we need to make the tastiest most nutritious soup to feed ourselves.  How can you convince the villagers of your life to share their ingredients?  Remember, in the fable, the travelers didn’t simply rely on the villagers’ curiosity, the said what they needed! So, the best way to get those ingredients? Get cooking with what you have!  Build the fire, put on the pot, plop in the stone.  The villagers will be curios. Likely, they will begin offering what they have to add to your soup.  Don’t be afraid to make suggestions – ask for what you want and need.  If you want a carrot, ask for a carrot.   The best way to get help is to start helping ourselves and then inviting others.  Action begets action.   How Do We Keep Out Unwanted Ingredients? Uh-oh.  Here comes a villager...

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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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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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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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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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A Voice from Better-Land

Posted by on Sep 12, 2016 in acceptance, coping, fears, featured, guest author, resilience | 2 comments

This post is guest-written by Faith Cornwall. In August of 2004 I was diagnosed with vulvodynia, a chronic pain disorder of the vulva, after what felt like five very long months. Finally, there was to be an answer, a solution, a CURE! Uh, nope. The gynecologist told me I should be grateful to have a diagnosis – an empty word – as they used to tell women that they were imagining the pain, making it up. And then she showed me the door. I googled the bejeezus out of my diagnosis, my experience, my symptoms, and found only a few abandoned blogs where affected women spoke of wanting to die. I wondered: did the blogs stop after a few posts because these women got bored, killed themselves, or, ever the optimist, perhaps because they had gotten better but never bothered to give us an update? Either way, it was not the community I was hoping for. But I promised myself I would get better. I was a college student then, and looking back I had something better than an online community: I had a group of bad-ass in-real-life friends, both men and women, who bravely stood beside me in the darkness and said, with that special bravado unique to ridiculous college students taking on the world, “F*** this S***!” Their courage lifted me up. Yes, I would get better, for me, and for all the women suffering as I did, past, present, and future. For all the women who were told their pain didn’t exist. For all the women who were shown the door. And gosh darn it, I did. It took a decade plus, during which I learned that healing can be a complex, multi-faceted, life-long, and sometimes vomit-inducing roller coaster of a process, and, at least in my case, took information, inspiration and help from resources far and wide, traditional and innovative, well-established and groundbreaking, logical to the head and sometimes only to my heart. Life being Life, I can’t guarantee I won’t have additional relapses. I never know if some new day might bring some new illness, as it has so many times in the past. I still live with a handful of health challenges, and although they too require love and care, they are not as debilitating as the previous visitors. But for now, I am better. My “work-in-progress” self is experiencing a prolonged state of Better. So, to you, Dear Hearts: I cannot guarantee an outcome. I do not know your solution, although I wish I did. But I can share my experience, molded over a decade of living with a tangle of debilitating chronic health issues. Better is Possible. (Gentle Note: It may not...

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

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