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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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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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How to Talk to Kids About Your Chronic Illness #AWAPwednesday

Posted by on Sep 14, 2016 in ChronicBabe Basics, featured, friends and family, practicalities, relationships | 3 comments

Have you ever needed to talk to a kid about your chronic illness? Not the easiest, is it? I recently got my first questions about it from one of my nieces, and I was very careful about what I said. Today, I share what has worked for me in the past. And I’m very curious to hear what works for you! *AWAP = As Well As Possible Now it’s your turn: How about you? Have you had conversations with your kids (or your friends’ kids) about your chronic illness? 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: 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? Why do you take medicine? My nine-year-old niece asked me this recently while I was visiting my family back in my hometown. Why did you decorate your pill case? What’s chronic illness? Why do you have it? She was full of questions! Most kids will be, by a certain age – especially when they start to realize that other people are noticing you’re different in some way. I’m not a parent, and I’m not a child psychology expert, so take what I have to say here with a grain of salt. Because I am a very active auntie to a handful of kids, biological relatives and family of choice. And I’ve had to explain my chronic illness to almost all of them. Don’t make it depressing If a little kid you love asks about your chronic illness, you are not obligated to explain all the gory details. In fact, I think simplicity is best; they’re going to take what you say and process it for a while, and you don’t want them thinking about all your intense symptoms, right? With my niece, I simply said I have a chronic illness that makes me hurt and makes me tired. That’s it. She’ll learn more about my many symptoms as she gets older, but for now, that’s enough information to give her a framework. Welcome their questions My niece didn’t understand what “chronic” meant. She gets illness, but the chronic part was hard...

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A Letter To My Sister With IBD

Posted by on Sep 2, 2016 in acceptance, coping, fears, featured, friends and family, guest author, inspiration, pain, relationships, resilience | 8 comments

A photo of you I took in August. We woke up at 5am for sunrise on the beach.   To my 17-year-old sister with Ulcerative Colitis (UC): When you go off to college soon you will have days when you aren’t able to go to class. When you email professors to let them know, you’ll be too ashamed to tell them what’s really going on. You’ll tell them you’ve been throwing up all night and you’re afraid to leave the bathroom and sit in a classroom. The second part will always be true – you will be on hour three or four of sitting in the bathroom and you are afraid to leave it. But we both know our inflammatory bowel disease (IBD) doesn’t make us throw up. When people ask you about your health-related absences, you will be vague and say: “Sorry I was in the bathroom for so long. I was sick.” And if they prod it will become: “Yeah, totally throwing up for like 30 minutes. Super gross.” It’s not technically true. But it you will be less afraid to say that than the truth.   I called you in April to interview you for my final article for my final journalism class of college. I had decided to look into why I felt too ashamed to talk about my true Crohn’s symptoms. I read books on the psychology of shame, interviewed our GI doctor and a psychologist, talked to friends and acquaintances with Crohn’s and UC (that included you!) and I found an overarching trend of shame. The belief that we are “lesser,” that we are somehow “dirty” and “not whole” because of our symptoms, pervaded almost every interview with other IBD patients. The shame here is a painful belief that one has a failure of being, that one is too flawed to be wanted or valued by others and that we will be abandoned. My research made a lot of sense to me. I knew one of the main reasons I was too ashamed to talk about my symptoms or my illness in general was that I had a reputation to uphold: that of a person who has not failed at being, who is not too flawed to be valued by her peers. I was afraid that if I spoke frankly to friends or, most terrifyingly, boyfriends, they would leave me. This fear of abandonment is at the core of our shame. I never told you that after I interviewed you on the phone, I sat in my bed and cried. When you were diagnosed at age nine with UC, four years after I had been diagnosed at the same age with Crohn’s, I...

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Taking Precedence

Posted by on Aug 8, 2016 in coping, fears, featured, friends and family, guest author, health care providers | 9 comments

This post was guest-written by Lee-Ann Liles. My health precedes my every decision. I live in Bermuda, an ideal place to work and vacation in one package. Yet, Bermuda is known for harboring an increasingly high number of people with chronic illness, some of the most stand-out ones being heart disease, diabetes and cancer. With 65,000 people on 22 square miles, Bermuda has produced some very rare and difficult to diagnose and treat illnesses due to its isolation in the middle of the Atlantic. With this in mind, you would think that doctors would be receptive to patient woes, but this is not always the case. Every year after completing my annual physical, I would celebrate the fact that I had not acquired any of the chronic diseases that have marred my family. In my maternal family alone, everyone has a “chronic disease.” These include Crohn’s disease, lupus and breast cancer and gives me every reason to be attentive to my health. After having my daughter in my late thirties, I took full advantage of the quiet times when she was asleep, but I was also completing my Masters. The pain, stiffness and exhaustion that developed during that time never went away, later growing into inflammation and a strange hyper-vigilance to the noise in my environment. I discretely talked to friends and family about my health and received helpful information, but I stopped seeking help until a friend asked me why I was always out of breath. I realized my health was just as important to others as it was to me. I visited three physicians before I was tested for a chronic illness. The third doctor concluded I had Systemic Exertion Intolerance Disease (S.E.I.D.), but after further investigation with a Rheumatologist she concluded that it was possibly psoriatic arthritis, Celiac’s disease, Crohn’s disease or lupus. She gave me a Cortisol shot for adrenal fatigue and I was amazed at the change! I was to hop on a plane to London and then France the next day and for the first time in five years, I stayed energetic throughout the trip and even danced in a nightclub. As difficult as it may be, I am adjusting my daily plans to accommodate my health, even though I have not yet received a diagnosis. I will listen to my body to avoid exhaustion. I will learn to say “No” more often and regulate my diet and exercise to find balance. I will continue to find peace of mind, through quiet periods of relaxation, which will reduce my stress levels. In this way, I know there are wonderful things to come. Never give up.     **This is the fifth of many in a...

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Don’t take this personally, but… #AWAPwednesday

Posted by on Aug 3, 2016 in ChronicBabe Basics, featured, friends and family, relationships, resilience | 0 comments

It is very easy to take the criticism of others personally. Trust me: As a public person, I receive a lot of criticism, so I’m continually learning how to NOT take it personally. In today’s video, I share a few things that help me keep my distance from the opinions of others: *AWAP = As Well As Possible Now it’s your turn: How have you shrugged off rude comments from others? How do you stop yourself from taking things personally? Share your experience 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: No offense, but… (insert something offensive) Don’t take this personally, but… (insert something definitely personal) It’s not a big deal but… (insert something that’s a big deal) Step one of learning how to not take things personally: earplugs as soon as you hear those warning phrases! (off-screen: Alix: Don’t take this personally, but…)   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? It is very easy to take the criticism of others personally. Trust me: As a public person, I receive a lot of criticism, so I’m continually learning how to NOT take it personally. Here are a few things that help me keep my distance from the opinions of others: They’ve got baggage Every person who criticizes you has their own baggage, their own history, which impacts how they behave. It can be challenging, but maintaining some perspective on their background can help you shirk off their critique. For example: Let’s say one of your friends is really harshing on how you talk to your significant other. Yes, it stings! But: She’s going through a divorce, so she’s probably projecting her own frustrations or fears, unintentionally. So perhaps instead of letting her criticism stick with you, you can try to release it, knowing it’s not about you. It’s not about you Speaking of “it’s not about you,” we often interpret things other people say as being aimed at us, when in fact, it has nothing to do with us. For example: Let’s say you’re at the doctor’s office and the nurse puts you on the scale. “I see you’ve...

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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. 

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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