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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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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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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 Heart-Felt Lovefest From a Fellow ChronicBabe #AWAPwednesday

Posted by on Sep 7, 2016 in featured, inspiration, relationships | 2 comments

Sometimes, we don’t need a lesson, or a how-to, or a pep talk. Sometimes, we just want to feel loved. Amirite? As ChronicBabes, our lives are really hard. We have moments when we tire of the daily strain of chronic illness or pain. We get frustrated that we have to work twice as hard as healthier people to accomplish the same stuff. We get tired of having to cancel plans. We worry that we’re not valuable members of society if we’re not able to work. We feel like maybe we’re not the best moms, sisters, friends, co-workers, lovers, neighbors. I feel you. While I spend time most days pepping myself up to go out there and be The ChronicBabe, some days I just want to be told I matter, you know? So today, I’m giving you the thing I sometimes need most. A total lovefest. *AWAP = As Well As Possible Now it’s your turn: How about you? Do you feel loved! Let me know 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? Hi! I love you. I really, really love you – just the way you are. (Transition) 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? Sometimes, we don’t need a lesson, or a how-to, or a pep talk. Sometimes, we just want to feel loved. Amirite? As ChronicBabes, our lives are really hard. We have moments when we tire of the daily strain of chronic illness or pain. We get frustrated that we have to work twice as hard as healthier people to accomplish the same stuff. We get tired of having to cancel plans. We worry that we’re not valuable members of society if we’re not able to work. We feel like maybe we’re not the best...

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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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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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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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