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Art and Poop: Why Chronic Pain Patients Need to Talk About the Icky Stuff

Posted by on Aug 28, 2018 in activism, Creativity, featured, pain, sponsored | 7 comments

Salix Pharmaceuticals provided me with a stipend and paid for my travel and accommodations related to the event. However, all opinions are my own. Most people I meet hate talking about poop, but I don’t mind. Poop is one aspect of life we all have to deal with, and I’ve recently learned it is an important topic for those of us with chronic pain. So, I’ve never shied away from talking about it or any of the other “icky” topics. When Salix Pharmaceuticals asked me to participate in a blogger event, I was wary at first—I so rarely do projects with pharma—but when they explained that it was a unique art event designed around learning about “Painstipation” (the constipation caused by opioid pain medication in chronic pain patients), and that they were presenting findings from a survey on opioid induced constipation (OIC) sponsored by Salix in partnership with U.S. Pain Foundation, I just had to say yes. I mean, art and poop talk – this was going to be interesting. I knew a good bit about OIC before the event, because I have chronic pain and have taken opioids in the past—and because I’ve heard about OIC as a volunteer and creative partner with U.S. Pain Foundation since 2010. So many people in the chronic pain community rely on opioids to help manage their pain. This means many of them also have to deal with OIC. A bunch of feisty bloggers Salix invited me and three other bloggers out to California to attend an educational, creative event about “Painstipation.” Leslie Vandever is a blogger I’ve known for ages; she has rheumatoid arthritis, and she writes at Rheumablog, among other venues. She has openly shared that she relies on opioids to manage her chronic pain so she can continue to work and advocate for the chronic pain community. Brittney Wilson, BSN, RN, also joined us; she’s been blogging for years as The Nerdy Nurse, and has a reputation as a popular health care blogger. Charis Hill was the other blogger with us, and although I had not seen her blog at Being Charis, we clicked right away—she’s a firecracker. (In her blog, you’ll learn that she lives with ankylosing spondylitis.) For a moment, I wondered if Salix understood that they had a room full of feisty advocates on their hands? None of us are quiet bloggers—we’re all fighting the good fight for better health care for all. Once I recognized the potential for all of us to get creative together using art, I really appreciated the thought that had gone into the event. The research: opioid-induced constipation and chronic pain Before we made art, we talked about the survey. Salix, in...

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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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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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What’s the worst/dumbest/most angering thing people say about your illness? #QOTW #CommunityCollab

Posted by on Sep 22, 2016 in community collab, Creativity, featured, friends and family, ranting, relationships | 11 comments

This week, I tried an experiment. Our Questions Of The Week (QOTW) feature has been awesome this summer, and I thought I’d try asking a question about something negative (I usually go for the positive, or at least neutral). And y’all went CRAZY! Here’s the entire original post; it has 62 comments! I’m so in awe of this community. We have to deal with so much, and so many of you posted things and got a ton of commiseration and support from others – I’m really proud of you all. I’m working on a PDF soon that will address potential answers (snarky or not) to all these comments and more. Here are some examples: In no particular order: a list of things that people say to us that make us want to go all HULK SMASH on them. Feel free to add more in the comments. And to share with folks so they learn what NOT to do. AND this is only a partial list of what people said on Facebook. For the full list, visit the original post, and feel free to comment there, too. I’ll start: “It could be worse” – someone said that to me yesterday and it made me so mad. Of course it could be worse! But as someone who’s so dang positive all the time, for one moment, can I just get a little support? And then you can help me find perspective again? But maybe NOT by saying “it could be worse”? “But you’re too young to be disabled or sick” (usually with “it’s such a shame” tacked on to it if in a wheelchair and therefore my M.E. is visible) – my age has nothing to do with it and it most definitely doesn’t make me feel any better to be reminded that I should be in work/in love etc because of my age. “Exercise more , that’ll get rid of it.” “I am so sorry you’ve chosen to tie yourself to Big Pharm. I wish you could have found alternative or holistic solutions. I mean, have you tried…” “Oh, I thought you must have been all better as I see you leaving the house”… ugh. Made me feel so frustrated because I know that is how SO MANY people think. “You miss too much work, maybe you should think about getting on disability.” (In reply, one babe said: “I did go on disability then was told by the same people, ‘you’re so lucky, how does it feel to be on permanent vacation.'” Then the original poster said this: “I’ve totally heard that when I return from a medical leave. I guess the trick is to learn to disregard those types...

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The Art of Being Chronically Ill

Posted by on Sep 5, 2016 in acceptance, career, coping, Creativity, fears, featured, guest author, inspiration, resilience, Work | 12 comments

This post is guest-written by ChronicBabe HellyTheElephant. It is never easy to be creative. If you have been told you are talented then there is always the fear of a negative response; if you have never felt you are any good, then illness can amplify your lack of confidence. But as that great artist Dr. Seuss put it: “Be who you are and say what you feel because those who mind don’t matter and those who matter don’t mind.” So…I have my work propped up while I am lying down on my bed in the Hellyphant house (SW England). The blinds are shut, crayons are rolling around the duvet, and I have just dipped my paintbrush in my herb tea. Readers will be relieved that this hellyphant is not wearing the hotpants and striped tights she wore as an art student some moons ago; neither am I sporting a beret and a smock (although come to think of it one would hide my unwashed hair, and the other could conceal my muffin-top…). The first time I was chronically ill was in the nineties. There were no Internet forums (…and no ChronicBabe!), so info was hard to come by, and writings about ME (Myalgic Encephalomyletis) were still in the cave-painting stage. I had been a 22-year-old professional illustrator…Then I got sick. Really sick. And, well, the rest of my story probably follows similar lines to your own: you search for answers, you assume you will get better…until you realise this is going to be a marathon not a sprint (ironic as you definitely won’t be doing either!). Now 26 years greyer, and with ME reducing me to about 30% of function again, (even during my time of being “well” it had never entirely gone away,) not that much is lovelier the second time around. However, I have been really blessed by marriage to Mr. Helliphant (who is also a chronic health dude), and a strong faith. The other thing that is really different is this time I proudly label myself a “Horizontal Artist” due to the fact I can only work lying down. Initially I was happy to have time to be scribbling again, and I drew nature – the flowers friends brought me. I had no idea of how I could paint the sense of frustration and disappointment that was growing week upon week.   There was “That Day.” “That Day” started with the sound of the last straw being added to this elephant’s painful back. I was several days into a grisly flare-up, with no answers from the medics, and in a lot of pain with no effective painkillers. I felt furiously angry at everything and everyone. How...

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Emergency Preparedness Issues and Solutions Series Part 3: Creating a Bug Out Bag

Posted by on Aug 31, 2016 in community collab, coping, Creativity, featured, guest author, inspiration, practicalities, resilience |

This post was guest-written by Team Blue (Kyrie-Inn Blue with help from Tao Blue, Service Dog, Canine Good Citizen; and Mijo, Service Dog In Training).     Often disabled folks are too busy trying to survive day to day that they neglect tackling the emergency preparedness necessities that may just save their lives, their health, their property, their sanity, and their independent living status. Where do you store your important documents? How can someone track you in a SHTF (“sh*t hits the fan”) situation? Do you have a plan in place for solid shelter if you face a storm? If so, what do you need to have on hand to create viability? Two weeks without power has faced Team Blue on multiple occasions. Let us help you avoid omissions in your checklists!!   Today’s topic: creating a Bug Out Bag (BOB)   We all need to seriously evaluate our personal emergency preparedness on at least a quarterly basis, rather than wait until the weatherman predicts a “superstorm.” Emergencies of all kinds happen on a daily basis, even those that are un-weather- related, like fires, certain types of evacuations, identity theft, etc. Can you efficiently respond to rather than freeze in a crisis? Team Blue knows it’s easier said than done… unless you have taken the time to prepare, equip,and practice.   Today’s topic: Creating a Bug Out Bag (BOB) (aka survival bag, aka GO bag, aka get-home bag, if anyone cares to search Google for further information and ideas!)   Today, we look at what one should stock in their BOB.   The Basics We should first define what a BOB is, how we prepare and use a BOB, and then you may adapt your BOB to serve your particular needs and situation. BOBs contain the supplies, documents, and whatever you need in case of emergencies, where you may be forced out of your residence or vehicle and need to stay safe until you may return to either, or until you can get to a safe location. We have found it helpful to have one centrally located in the house, clearly marked, so if we find ourselves needing to have people like our home health aides, case managers/case workers go get it, they can easily run in and grab it.   We choose backpacks of different colors to identify which BOB is for which situation (we need several). Our service dog has his own doggie backpack for outing and a messenger bag for his hospital/fire BOB. Choose the bag that suits your physicality best. Often one can find reasonably priced gently used backpacks or other styles of bags at thrift stores, or by posting a “want” on; if...

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