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How to find hope during difficult times with chronic illness #AWAPwednesday

Posted by on Jan 25, 2017 in ChronicBabe Basics, coping, depression, featured, self care | 8 comments

Hello, there! I’m so happy to be back with a fresh video for the new year, all about the little things I’m doing daily to find hope: Yesterday, I was feeling SO down. The world is just bonkers right now, and it’s hard to stay positive when I see bad news every single day. That’s on top of living with chronic pain and its unpredictable, totally sucky nature! So try as I might, sometimes I just get really low. So yesterday I did a handful of things that really helped. Probably just one would have done the trick, but… I never like to do things halfway, so I did a bunch of them. This week’s #AWAPwednesday video shares all the details. I hope they inspire you to come up with your own list of hopeful activities! *AWAP = As Well As Possible Now it’s your turn: What kinds of things are YOU doing to inspire hope in your day-to-day?  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!...

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How Losing My Baby Saved My Life

Posted by on Oct 10, 2016 in acceptance, coping, depression, featured, guest author, pain, resilience | 5 comments

This post was guest written by Dany Barrett-Santaniello.   The mysterious purple rash appeared on my upper right thigh about four months into my pregnancy. Here I was, forty-one and doing the seemingly improbable: I was having a baby! Previously, I had had a miscarriage while on vacation with my husband and three teenage boys, but this time the nurse had said those magic words: “I think this one’s planning on sticking around!” My elation was insatiable and I was in love with this baby, this boy, we had found out. When I showed the rash to my husband, he noted that it was beneath the skin and said it was probably hormone-related. I was incredibly tired (hey, pregnant lady in her forties, what do you expect?), my body hurt and the pregnancy began to get very arduous. I reminded myself that I was twenty-seven when I had my first child, so hey, forties and pregnant, suck it up! Nothing seemed to be out of place : swollen joints, but regular blood pressure, normal heartbeats at check ups, my boy was growing strong!   During the sixth month of my pregnancy, on a night when my husband was traveling, I felt an internal tug, a feeling that woke me out of a comatose-type of sleep. The pain was so intense that I could not sit up and it traveled down my right leg. After regaining my breath and bearings, I called my obgyn and received the news that as long as there was no spotting (Thank you, God, no spotting!), it was probably leg pains and I should rest tomorrow. I called into work and rested. The next day, my husband returned home. I had spent the day resting and was ready to return to work as an eighth grade English teacher. I hadn’t felt the baby move, but I tried not to be too concerned. That boy had to sleep sometime, right? Right?! The next morning, I started to feel pains deep in my womb as if the baby were pushing against my cervix. I went to work and was talking to a colleague when the pain became so bad that I had to brace myself against the door frame. He asked me if I was ok, and I assured him that I was. During the last period of the day, I was giving instructions to my students when I was overcome with what I realized were labor pains. I called the main office and they had a teacher cover the end of my class while I called my doctor and began the hour drive to the office. I started to intuitively breathe in short bursts and drive. I...

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It’s OK to be Sad in the Summer #AWAPwednesday

Posted by on Jun 29, 2016 in acceptance, depression, featured, inspiration, resilience | 0 comments

You know, we face a lot of pressure to be really happy when it’s beautiful outside. But for many of us ChronicBabes, sunny days are not always happy days. Yet, we try to feel happy, sometimes stuffing down negative feelings. It’s time to knock it off! In today’s video, I give you permission to #feelthefeels and be sad. Not to wallow, not to give up, but to acknowledge the realness of your temporary sadness. And not beat yourself. Watch today’s video, then tell me: how do you honor your feelings, even when they’re negative or uncomfortable or not pretty? *AWAP = As Well As Possible Now it’s your turn: Have you struggled to get OK with temporary sadness? I want to know! 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: Summer is my favorite season of the year, and I adore every minute of it. Well, except for the minutes when my fibromyalgia flares up. Or when my depression kicks in. Or when I feel anxious. Grrrrr why can’t I just enjoy every dang beautiful day of the season?! I don’t want to miss a single minute! The reality is, I will have to miss some beautiful summer days because of health reasons. Perhaps you will, too. If you’re like me, you may feel extra-sad because of missing out, or guilty because you should be out there with your friends, or your kids. I get it. So I give you permission to be sad. It’s OK! If you have to miss out, it’s understandable that you’d feel bummed. It’s OK. We put a lot of pressure on ourselves to be strong, to be brave, and to always put a smile on, even in the face of awful stuff. And most of the time, that makes sense—sometimes it’s through toughing things out that we’re able to push past a plateau. But sometimes, you’re just going to feel sad, and it’s OK. It’s not forever. You’re not being wimpy if you feel sadness. It’s a legit emotion that we all feel sometimes. Am I giving you permission to mope all day or all week? Nope. Am I saying I support behaviors that can deepen depression symptoms? Nope. What I AM saying is that you’re allowed to have a range of feelings. Sometimes those feelings are inconveniently timed, like on a beautiful summer day when you just want to cry. You have my...

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Step Therapy Sucks, and I’m Tired of Being Quiet About it (AWAP Wednesday)

Posted by on Apr 20, 2016 in activism, Affordable Care Act, coping, depression, fears, featured, Health Care Reform, pain, ranting, resilience, suicide | 22 comments

This week’s video is different. I’m sharing a personal story about something I’ve been struggling with this year—Step Therapy—in hopes that you’ll relate… and that you’ll join me in fighting this awful practice: Step Therapy. So it’s a longer video, a more passionate stance, and a request. Please take some time to watch it all the way through… it comes from deep in my heart. *AWAP = As Well As Possible Now it’s your turn: Have you gone through Step Therapy or something similar? How did you fight back? What worked, and what didn’t? I wanna know! Join the conversation in the comments below, share your experience and ask for advice from our community. Want to watch more videos like this? Check out our AWAP Wednesday video playlist, which has more than 10 hours of guidance, advice, and 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: Hi! I’m Jenni 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’s AWAP Wednesday is a little different, my friends. I have a personal story to tell you, and a request I hope you’ll honor. Here we go… [Bumper] The past four months have been absolutely hellish here at ChronicBabe HQ, and I want to tell you why. I’ve been pretty quiet about the details, but today I want to explain it all to you—because I bet many of you are going through the same challenges. If my story helps you feel like you’re not alone—and if my outrage helps motivate you or anyone you know to advocate for folks like us—then this video could possibly change lives. I’ve been taking an FDA-approved fibromyalgia medication for many, many years, with great success. The change it made in my life was enormous. You know me as someone who, despite fibromyalgia and a host of other chronic conditions, is able to run her own business; maintain an active social life; be part of a committed romantic relationship; volunteer for both local efforts like my community garden, and national efforts like patient advocacy; and much more. Right? That’s the Jenni you know: spunky, lively, upbeat, even in the face of deep struggle. [Transition] This year, my new insurer took away my fibromyalgia medication through a process called Step Therapy. (link to us pain doc) For those who don’t know, Step Therapy is cost-saving policy...

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How to Get Motivated, Even if You Have Chronic Illness (AWAP Wednesday)

Posted by on Jan 20, 2016 in acceptance, ChronicBabe Basics, coping, depression, featured, inspiration, resilience | 13 comments

Today’s AWAP Wednesday video is an answer to a question one of you sent me about motivation. Essentially, our fellow ChronicBabe wonders: I know I should be doing more things to take care of myself. Why can’t I get motivated? I’ve got a TON of ideas for you today, babes, and I get really personal in explaining how I stay motivated. Watch today’s video, in which I share the techniques that keep me super-pumped: *AWAP = As Well As Possible Now it’s your turn: What kinds of things motivate YOU? How do you stay excited or driven to meet your goals? What techniques DON’T work? I wanna know! Join the conversation in the comments below, share your experience and ask for advice from our community. Want to watch more videos like this? Check out our AWAP Wednesday video playlist, which has more than nine hours of guidance, advice, and 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: Hmmmm I really want to wash my hair, but I don’t feel motivated today. I mean, what are the consequences, really? I work from home and… gah! OK, fine! I’m motivated! Hi! I’m Jenni Prokopy of ChronicBabe.com and today is AWAP Wednesday (that stands for As Well As Possible). Each week, I offer you my 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? Every once in a while, I get a request from one of you that really tickles my brain. This question’s kind of tough, but I’m going to try to answer: “I make dates with myself to do things like wash my hair but I just can’t get the motivation together to do it. So I postpone it and I postpone it and I postpone it. It’s even worse when I have to get the motivation to play with my kids or do some paperwork or something. I have chronic fatigue, anxiety and depression, none of which is treated well enough to get around the motivation issue. How do I make myself do things? You say “just do it” but instead I lie here reading things on my phone.” I hear ya, babe. It’s not always easy to get motivated. But I’ve got some ideas for you that I hope will help. Get Treatment. First, let’s address something you said: “I have chronic fatigue, anxiety and depression, none of which is treated well enough to get around the motivation issue.” As someone who also has a condition that causes fatigue—and someone who lives...

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It’s OK to be Sad During the Holidays (AWAP Wednesday)

Posted by on Dec 9, 2015 in coping, depression, featured, friends and family, holidays, sexuality | 8 comments

Today’s AWAP Wednesday video is a quickie, and an importantie: I want to make sure you know it’s OK to be sad during the holidays. (Bonus: today’s video is illustrated with tons of my favorite Christmas and wintertime photos, because it’s a super-bad hair day here at ChronicBabe HQ.) It’s the most wonderful (and sad) time of the year In large swaths of the world, people get sad during this time of year because it’s winter. It’s dark, it’s cold, it’s gloomy. There are fewer hours of sunlight, and many of us experience Seasonal Affective Disorder (SAD). I mean, it’s all in the name, right? Many of us also experience some sadness around the holidays for emotional reasons: We feel a sense of loss because we’re not as healthy as we once were. We feel stressed because we’re spending more time with family and friends who may love us but don’t really understand us, and they sometimes put their foot in their mouth. We do what we can to cope, but our feelings are more easily hurt. And many of us experience very real stress from financial difficulty; we can’t buy all the presents we want to, we may be stretching ourselves really thin to make sure our kids get their wishes granted—and societal pressures keep us striving, sometimes past our limits. This is incredibly stressful. Finally, in the U.S., it’s the final few days of open enrollment for health insurance, and if you’re like me, the process of finding a new provider for 2016 has been grueling. My coverage is going to be significantly more expensive next year, so I’m entering the winter holiday season (and shopping season) knowing I’ll need to tighten my belt a little more starting in January. Woo hoo! It’s a party. Ugh. So I’m feeling sad. Some days, really really sad. I have to work to get out of bed and be productive, and I’m asking my friends and family for lots of extra help and support this time of year. I lean on a wide variety of people (including my healthcare professionals) for support because I know that they, too, are already spread thin. Maybe you’re feeling sad, too. And I want you to know that it’s OK. I’ve been fighting it. I’ve been feeling like a jerk for feeling sad. I mean, whoa—way to pile on, Jenni! But a very smart, trusted person in my life reminded me the other day that it’s OK to be sad. It’s not a sign of being less-than, and it’s not weakness. It’s a feeling about some very real shit going down in my life. And it will pass. And I know some tried-and-true things that can make my...

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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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