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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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Support From Friends and Family

Posted by on Jul 29, 2016 in acceptance, caregivers, community collab, coping, featured, friends and family, guest author, relationships | 2 comments

This week we asked: “What is your favorite thing a friend or family member has done for you when you’re flaring?” Here are some of our favorite answers. Read and re-read when you’re feeling down.   Keidra says she’s had numerous friends walk her home when her vision is bad and install lights in her hallway and on her stairs to help her see. When Fran was in the second acute phase of her Ramsay Hunt Syndrome and couldn’t move or see, her friend brought her a huge shopping bag full of books on tape so she would have something to do. Michelle’s 70-year-old supermom came and helped for the 3 months of recovery Michelle spent after a nasty car accident. Lindsay’s roommate and boyfriend threw her a mini party with cookies and party blowers when she had to go through an injection medication process that she hated. Tania’s friend cleans and de-cluttered her room for her as a surprise when she was at the doctor. Patricia’s mother moved to live with her daughter and help at home! When Mary Beth was embarrassed of her chipping toe nails at the hospital, her husband gave her a pedicure. Alix’s friend from across the US sent her flowers when she was in her first overnight hospital stay.   We are surrounded by such love! Being a ChronicBabe can be tough, but having loving family and friends makes all the...

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Block, ban, buh-bye: How to set boundaries in online chronic illness conversations #AWAPwednesday

Posted by on Jul 20, 2016 in ChronicBabe Basics, featured, friends and family, ranting, relationships | 0 comments

Are you sick of being irritated by Facebook? Tired of getting into online arguments with jerks? Me too! Today, I’m sharing my favorite tips for setting boundaries online so you can love social media again. Watch today’s video right now. *AWAP = As Well As Possible Now it’s your turn: How about you: Are you able to set boundaries? Do you ever ban or block folks on social media? 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: 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? There’s the denier: Your illness isn’t real. Your diagnosis isn’t accurate. Your symptoms are atypical so it can’t be (made-up disease name). There’s the comparer: At least you don’t have cancer. Or: Your pain may be a 5, but mine is one zillion! There’s the fixer: If you drink this or eat this or take this pill you’ll be fine. My aunt Mabel is cured!   And there’s the bully: You’re not really sick. You’re an asshole for sharing what works for you because it doesn’t work for everyone. you should (bleep) off. These folks are mostly well-meaning but let’s face it, they all suck to run into online. I mean, you’re there because you want help, you want to contribute, you don’t want to feel alone. These folks all get in the way. We will always have to learn how to cope with people who are different from us, and it’s a beautiful skill to learn to have meaningful dialogue. But when the dialogue is no longer meaningful, there are some easy tricks to minimize negative interactions. Quit. I don’t mean quit being online altogether, I mean quit the groups and forums where these folks thrive, and where moderators don’t step in to cultivate a positive community. There are a gajillion communities out there; you can find better ones. Block. If someone is still trolling you after you’ve given them a chance to change, block them. Yes, yes, people have the right to freedom of speech, but you have the right to stop listening. Cut them off. Ain’t nobody got time...

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How to ask for what you need when you have chronic illness #AWAPwednesday

Posted by on Jul 13, 2016 in ChronicBabe Basics, featured, friends and family, relationships, self care | 2 comments

Just about everyone—chronicbabes, chronicdudes, healthy folk—struggles with asking for help. It’s not the easiest to get vulnerable, and sometimes we don’t want to feel like a burden. But we live in communities for a reason: so we can coexist and help each other. Seriously. So you’ve gotta ask for help, babe. In today’s video, I’ve got three tips to help you be a better asker-for-helper. watch it now. *AWAP = As Well As Possible Now it’s your turn: Do you have trouble asking for help? What has worked for you in the past? 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: (reading from a scroll) I need cake. I need a foot massage. I need a hoverboard. I need unlimited access to quilting fabric. I need more nail polish. I need a green smoothie, like, STAT. I need a bigger closet. I need my tomatoes to get ripe. I need all the cash. I need a thousand more wishes. I need candy. 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 we have trouble asking for what we need? So many people, not just ChronicBabes, have trouble asking others for help. For ChronicBabes, there’s a huge desire to be fiercely independent, to avoid feelings of inadequacy, or feeling like a burden. I’m here to tell you that’s whack, babes. You’re allowed and encouraged to ask for help. You’re amazing, but you’re not Superwoman. Be direct Asking people for help sucks. But you gotta do it. Throw your hat in the ring and ask for what you need. Be direct: “I need help loading my groceries into my car” or “I need recommendations for a good babysitter.” You can even ask for help to ask for help: “I need help brainstorming how to ask my boss for more at-home work days.” Don’t expect people to read your mind Similarly, don’t assume your friends, family, and acquaintances know what you need. They aren’t mind readers and unless you tell them you need something–and exactly what it is you need–it probably won’t get done. And sitting around waiting for someone...

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How to Be a Good Friend if You Have Chronic Illness #AWAPwednesday

Posted by on Jul 6, 2016 in ChronicBabe Basics, featured, friends and family, relationships | 0 comments

Lots of ChronicBabes put way too much pressure on ourselves to be perfectly reliable and present for everything—and to always plan fun outings and events. But babe, most of your friends don’t care if you’ve planned a special outing. What they really care about is connecting with you. They’re probably just as happy staying in, doing a face mask and watching a bad movie. And who do you know how is perfectly reliable? I mean, really? Anyone? The reality is, no one can be perfectly reliable—it’s just now how humans operate. You can be a good friend by planning fun times that work for YOU, and YOUR good friends will come along for the ride. Today’s video is all about how to be a good friend, which you totally can do! Even with chronic illness. Watch it now: *AWAP = As Well As Possible Now it’s your turn: How do you make sure you’re always being a good friend? How do you handle scheduling with friends? 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: Lots of ChronicBabes put way too much pressure on ourselves to be perfectly reliable and present for everything – and to always plan fun outings and events. But babe, most of your friends don’t care if you’ve planned a special outing. What they really care about is connecting with you. They’re probably just as happy staying in, doing a face mask and watching a bad movie. And who do you know how is perfectly reliable? I mean, really? Anyone? The reality is, no one can be perfectly reliable – it’s just now how humans operate. You can be a good friend by planning fun times that work for YOU, and YOUR good friends will come along for the ride. Your illness might be something like Crohn’s or fibromyalgia, which can cause big flare-ups out of nowhere – so you may be fearful of making plans in advance. That doesn’t mean you can’t make an effort to see folks. While some people don’t have the flexibility to do last-minute stuff, plenty of folks do – so give yourself permission to host last-minute gatherings whenever you feel like it. Just don’t take it personally if some people can’t make it – just like you hope your friends don’t take it personally when you have to cancel. You can be a good friend by continuing to invite folks...

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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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