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How to say “no” when someone keeps buggin’ you with questions about chronic illness #AWAPwednesday

Posted by on Feb 1, 2017 in ChronicBabe Basics, featured, friends and family, ranting, relationships, self care | 2 comments

Do you get tired of people asking you to justify self-care? Are you sick of answering probing questions about “what’s wrong now?” when you need to reschedule something? Me, too! Today I’ve got my favorite phrases for shutting down those conversations and moving into more productive territory: I think this is something we all deal with, so I came up with a bunch of tips to help you – adapt them to your particular needs. *AWAP = As Well As Possible Now it’s your turn: How do YOU handle conversations where people push back when you set boundaries? I want to know! Tell me all about it in the comments below. Want more #AWAPwednesday? Check out our #AWAPwednesday video playlist, which has more than 130 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!   (Rough) Transcript: Aw, thanks, but I’ve gotta wash my hair. Gee, that’s a nice invitation, but I have another commitment. Wow, you’re tenacious — thanks, but no thanks. Aw, hell no! 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?   Today I want to talk to you about saying no to people when they won’t stop buggin’ you about your chronic illness (or limitations related to it). I was talking with a friend the other day, and she lives in a community where people really push and push if you say no — they demand an explanation. I think that’s baloney! Most of the time, when you say “no” to someone, you don’t owe them a detailed explanation. But people can really make us feel like we have to explain ourselves. Today, I’m sharing a few strategies I’ve learned through the years that shut down unwanted conversations. Let’s say you need to cancel a coffee date with a girlfriend because you’re having a flare-up. You call her and say “I’m having a flare-up, so I’m sorry but I need to reschedule.” She responds with: “But why? I thought you were fine yesterday?” You could: Go into a lengthy explanation of your unpredictable chronic illness and its daily attempts to steal your fun. (That can be a real downer for both of you!) You could get defensive, and end the call abruptly. (That could damage your friendship!) Or… You...

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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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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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Laugh, ChronicBabe!

Posted by on Sep 26, 2016 in acceptance, coping, featured, friends and family, humor, inspiration, resilience | 3 comments

This post was guest written by ChronicBabe Elizabeth A. Delisi.   “He who laughs last, laughs best.” Famous saying…I don’t know who coined the phrase. I suppose it could be interpreted as a courageous act – you know, “Laugh and the world laughs with you; cry and you cry alone.” And there is no place more needing of a laugh than when a ChronicBabe is fighting a chronic disease. My dance with disease began in January of 2010, when I pointed the remote control at the television and noticed my hand was wobbling up and down. What the heck? The trembling in my hand continued to get worse, so I saw a neurologist and was diagnosed with Parkinson’s Disease in August of 2010. That was the day that my life, and my future, changed. My sister, who had accompanied me to the doctor, asked me how I felt about the diagnosis. I said, “I feel numb.” And to tell the truth, that feeling lingered for some time. I felt fine other than the tremor in one hand…so how could I have an incurable disease? Well-meaning people tried to get me to join support groups, but I turned them down. I was struggling with the diagnosis as it was. I was afraid if I saw people who were worse off than I was, farther down the disease’s road, I’d give up all hope. My attitude toward Parkinson’s started to change when I read three books written by a fellow Parkinson’s sufferer, Michael J. Fox. He spoke of how the disease gave him a chance to restructure his life and his priorities, to look at all the positives he had instead of focusing on the negatives. His words struck a chord with me, and I figured if he can be positive, so can I. It was easier said than done. The symptom that bothered me most wasn’t the tremor, the slowness of movement, the stiff muscles, the fatigue, the weakness, or the inability to focus. I could have laughed at them. No, my least favorite symptom was a nasty case of anxiety that popped up frequently, in all sorts of situations. And it was hard to laugh when I felt an impending sense of doom hanging over my head. But I had a husband, children, and grandchildren. I needed to do more than put on a brave face for them. I had to accept what I couldn’t change, and try to be light and happy as much as possible. The easiest way for me to project joy was to make what the kids always called “Mom jokes.” My husband, Dan, had “Dad jokes,” too, but his were of a different character....

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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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