HOW TO BE A CHRONICBABE A BEGINNER’S TOOLKIT
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by Jenni Prokopy: ChronicBabe
HOW TO BE A CHRONICBABE A BEGINNER’S TOOLKIT
Hooray! Thanks for being awesome. Thanks for being part of the ChronicBabe community. I’m so glad you’re here! XO!
Who’s this Jenni Prokopy chick, and why is she smiling at me? Excellent question. You may ask yourself why I’m smiling on the 6irst page of this toolkit. Do people with chronic illness really smile? Laugh? Have fun? Feel satis6ied? Yup, a lot of us do. Maybe that feels impossible to you right now. But it’s not—I promise! It’s unusual to create a publication like this where the author speaks to you directly, but hey—this is 2
girl-‐talk time, right? I’m giving it to you straight. Just so you know where I’m coming from, let me tell you my story: I was often sick as a kid—allergic to every-‐ thing, always with an ear infection, suffering “growing pains” that would keep me up for nights on end—even experiencing frequent chest pains that I thought were small heart
attacks. (The doctors never found anything, and I learned as an adult that they were likely symptomatic of anxiety attacks.) I had spinal meningitis at 13, and mononucleosis at 18. Despite all that, I was extremely athletic and active, and always took my physical 6itness for granted. Until I turned 25. That’s when a bunch of things
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HOW TO BE A CHRONICBABE A BEGINNER’S TOOLKIT
Why did Jenni start ChronicBabe? To help you be more awesome. came at me from left 6ield: 6ibromyalgia, asthma, depression, anxiety and Raynaud’s phenomenon. (And since then, I’ve added GERD and hypothyroid to the list. It’s a party!) I had no idea how to handle myself. The fear, confusion and loneliness I felt were immense, and I started to experience deep depression. My situation felt ridiculously unfair. I was young, and active, and “in the best shape of my life”—and yet I also felt like crap. The stress caused me to lose almost 40 pounds over just a few weeks, and when acquaintances would say, “you look amazing!” I would smile, and say “thank you,” all the while thinking, “I am dying!” With every test, each more invasive than the last, I was sure the prognosis
Being a ChronicBabe is a state of mind. You’ve made a great start! would be a worst-‐case scenario. So it was even more frustrating to go through dozens of examinations and hospital visits and have almost every test turn up… nothing. Eventually, a doctor explained to me that with 6ibromyalgia, the symptoms were highly varied, somewhat unpredictable, and that conventional tests wouldn’t show us anything of value. Wow, was I glad I had gone through the paces of all those other doctors! Sheesh. One doctor eventually told me to “get ready to live a life of pain” and to “take some Advil.” Of course, with compassionate treatment like
Are you ready to rock this life? Yes! I know you are!
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HOW TO BE A CHRONICBABE A BEGINNER’S TOOLKIT
I’ve been living with chronic illness for more than 15 years. My life isn’t perfect—far from it. But I’ve got a few tricks up my sleeve. And I am SO excited to share them with you! - ChronicBabe Founder & Editrix Jenni Prokopy
Are you ready to kick ass and take names? Yea, I thought so. RAWWWRRRR! that, it was no wonder I fell into a depression. I stopped working out, gained back all the weight I had lost, and began to feel helpless. It was a real low point. Big bummer, right? Don’t worry—I’m getting to the good part! Despite all the bad health stuff, other parts of my life were looking up. My career was growing and getting stronger (I had a great boss who gave me lots of 4
opportunities and the 6lexibility to sometimes work from home), I was making some cool friends (who continue to be a solid support system years later), and I had fallen in love with a great guy (who accepted me, with all my limitations). I had some real motivation to get better. I started hunting for new solutions. After working with a few different doctors, I 6inally found a rheumatologist (and a
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HOW TO BE A CHRONICBABE A BEGINNER’S TOOLKIT
ChronicBabe is for ladies young & old. It’s about attitude. Age ain’t nothin’ but a number. team of pain management folks) at the Rehabilitation Institute of Chicago. These were people who understood my struggle, and would work together to help me become more active again—to help me reshape a life that included all the things I loved. Over the next couple years, I began to rebuild my self-‐image. I had to 6irst accept that 6ibromyalgia had changed my life in signi6icant ways. With lots of help, I slowly adapted and learned how to keep working and having fun despite lots of pain and fatigue. Even with asthma, I learned how to exercise in ways that didn’t cause a big 6lare-‐up. (I had some great physical therapists who taught me to pace myself.) Cognitive therapy helped me learn about behaviors that were holding back my progress, and I started using a variety of alternative pain management techniques to get my symptoms under control. I got comfortable telling friends and family about my limitations and needs, and most people handled it well.
And YES there have been many, many bumps along the road. I’ve had my house nearly destroyed in a storm. (With me in it! Talk about PTSD; that took a while to get over!) I’ve been through a divorce. (And now have a kick-‐ass boyfriend). And with the economic ups and down of the past 6ive years, I’m sure it won’t surprise you to know that I’ve had to work my buns off to stay 6inancially strong. Whew! And still: I’m happy. I’m ful6illed. It’s pretty rad. Why am I telling you all this? I want you to know that I’m not just a white coat spouting “do as I say, not as I do” advice. I’m a real person, with more than 15 years’ experience with chronic illness. I’m here to point you in a direction I KNOW will give you a better life. Am I offering a cure? Nope. Am I offering a guarantee that I can “6ix” you? No way. I’m offering a perspective that can give you hope, and pride in yourself and your accomplishments. I want to show you how to be what I’ve become: a ChronicBabe.
The longer I worked at getting better, the easier it became. The result: today, I feel better than I have in many years. I’m able to work full-‐time (heck, even own my own business!), my 6itness level is good enough that I can enjoy daily hour-‐long workouts, and I have a truly hopeful outlook. Yes, there are hard days, even days when I feel like staying curled up in bed. But those are few and far between, and that’s awesome. There was a time when I felt that way every day so I know that all the work’s been worth it. 5
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HOW TO BE A CHRONICBABE A BEGINNER’S TOOLKIT
I started thinking of myself as a ChronicBabe a few years ago. It was around the time I really got the hang of meditation, eased back into a daily workout routine, and got comfortable with all my friends knowing my condition. For the 6irst time in years, things just felt… less dramatic. Sure, I still felt crummy sometimes, but I wasn’t afraid because I had tools to reduce pain, fatigue and anxiety. And sure, I still had some limitations, but I had accepted them, and found workarounds that would sometimes allow me to do more.
So, what is a ChronicBabe?
and portable back pillow. And that felt incredible! One day, I was remembering what it was like for me years earlier, when I had felt so alone and scared. I decided to create a project that would help For the 6irst time in many other women like me, and ChronicBabe.com was born. years, I felt like myself again. Not a patient—not a sick person—but a woman. What is a ChronicBabe? A ChronicBabe is a A babe. Even with my orthotics and medications woman who, despite being Changing your perspective is good for lots of things. Mind. Body. Soul.
Take time to smell the flowers. Cheesy? Yup. Totally worthwhile? Oh yea.
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Making a big change like this— becoming a ChronicBabe—is great for you on many levels. Your mind will thank you, because you’ll spend less time worrying and more time thinking up creative ways to feel better.
a sick chick, still does everything she can to create balance in her life. She’s a woman 6irst, a patient second. Her approach is open-‐ minded and creative, and she’s not afraid to stand up for her needs and rights. She tries to have a sense of humor when she can, and she relies on her friends for support when she needs it. Your body will thank you, because you’ll be doing more to keep it as healthy as possible, all things considered. And your soul will thank you, because you’ll be showing yourself some amazing respect and love and compassion. Time to change your perspective. Time to look at life like a ChronicBabe. I’m so proud of you!
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HOW TO BE A CHRONICBABE A BEGINNER’S TOOLKIT
What is a ChronicBabe? Well, now a ChronicBabe is YOU. A ChronicBabe accepts that there are some things about her health she can’t change, and musters up the courage to take charge of the things she can control.
There’s no hard and fast rule about what makes a ChronicBabe. YOU get to make the rules! But a couple must-follow guidelines:
Being a ChronicBabe takes work and creativity, and a great support system, and planning, and… you get the picture. It requires a conscious effort—as opposed to the blind following of medical advice and just waiting around, wishing for that magic pill that transforms us back into the Babes we were before we got sick.
1. 2. 3. 4.
Maybe chronic illness is old hat to you, and you’ll slip right into ChronicBabe-‐ness like it’s your favorite pair of heels. Or maybe you’re newly diagnosed, and this all sounds a little unrealistic.
Be kind to yourself. Be open to new things. Cut yourself some slack. Get connected with ChronicBabe online so you don’t miss out on support tools. 5. Keep being awesome. XO! That’s okay—this toolkit is for beginners, old-‐timers and everyone in between. The ideas and tools offered here can be used by anyone, and even those of us who’ve been ChronicBabes for a while can always use a reminder.
Wondering where all these photos come from? My phone, that’s where. :) >That’s me on vacation! Follow me on Instagram for more.
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HOW TO BE A CHRONICBABE A BEGINNER’S TOOLKIT
How to use this toolkit: * Remember that I’m just a girl with a laptop and some ideas. Feel free to call me on any bullshit you spot. Scribble all over it. Cut out bits & tape them to your bathroom mirror. Email me ideas I should add for future editions. Think about it & discuss with your girlfriends. Make it yours. Make it yours. Make it yours.
How to use this toolkit: Read it. Print it. Tweak it. Make it yours. I wrote this toolkit as an introduction to the ChronicBabe approach, featuring some of the basic essentials for achieving balance in your busy life. Use one idea, or use them all. Adapt them to 6it your needs and lifestyle. Print out the templates and use them in any way that works for you. Read this toolkit on your computer screen, or print it out. If you like the toolkit, let me know! Send me a comment through the website’s 8
contact page (www.chronicbabe.com/ contact) or shoot me an email at
[email protected]. If you’d like to share the toolkit with someone else, instead of just forwarding the 6ile PLEASE ask them to subscribe to the ChronicBabe newsletter so they can get their own copy (and never miss any of the special goodies I share each week). Thanks! I’m so psyched you’re along for the ride. Now: Tools.
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HOW TO BE A CHRONICBABE: TOOLS TO ROCK YOUR WORLD
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HOW TO BE A CHRONICBABE A BEGINNER’S TOOLKIT
First things first: Learning to take good care of yourself If you’ve been living with chronic illness for a while, you’re probably very ready to start feeling better. There are lots of simple things you can start doing today. While some of these might seem obvious at 6irst blush, they’re worth taking a closer look. Stating a good intention—and carrying it through—is a great way to feel like you’ve accomplished something, and will help you feel just a little bit more in control of your health.
I chop a ton of veggies for salads (I use a Cuisinart so I don't hurt my hands), throw a few chicken breasts on the grill (and then slice and bag them for future meals), slice a bunch of strawberries and bananas for breakfasts, and divvy up snacks into single serving-‐size containers. Not only does this make meals easier to prepare throughout the week, but it also keeps healthy snacks in front of me, reducing the chance that in an overworked, overtired, deadline-‐driven fog I stumble into the kitchen and eat Start eating better You may be thinking, “Eat better? Duh. a whole bag of Fritos. You know how It’s not like I haven’t read that on the cover that goes. of every magazine in the universe.” But Find an “accountability partner.” This are you really doing it? Here are some is a great way to keep yourself in line. Use simple steps you can take today to start the daily health journal later in this toolkit eating better: to track your food intake, and then hook Do some meal planning. Lots of sites up with your accountability partner once a offer easy meal planning tools, like Weight week (or whenever it’s convenient) and compare notes. Watchers (www.weightwatchers.com) (you don’t have to be a member), Cooking Just knowing your partner is going to Light (www.cookinglight.com), and Every Day with Rachael Ray (www.rachaelraymag.com). For folks with celiac disease and food allergies, Living Without (www.livingwithout.com) offers great meal planning tips, and diabetics can get menu ideas and recipes from the American Diabetes Association (www.diabetes.org). Try some advance food “prep.” My biggest obstacle to healthy eating is the weekday rush. So instead of trying to cook meals from scratch each day, I sometimes take a couple weekend hours to do a bunch of “prep.”
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HOW TO BE A CHRONICBABE A BEGINNER’S TOOLKIT
call you on your bad habits can be enough motivation to stay on a healthy path. Practice good “sleep hygiene” Good sleep habits help everyone, not just ChronicBabes. The National Sleep Foundation (www.sleepfoundation.org) offers some great tips on getting good sleep. For a quick start, here are four things you can start doing today to get on a good path Exercise early. Evening to sleepy-‐time: exercise can get you all Establish a routine. Pick pumped up before bedtime. a time when you plan to go To avoid that adrenaline buzz late in the day, to bed every night, and a exercise as early as time to wake up every morning. Start tonight and possible. stick with it! It won’t be perfect at 6irst, but eventually your body will 6ind a rhythm, it will become easier to fall asleep, and you’ll wake up more refreshed. Skip the caffeine. Not everyone can go cold turkey like I did a couple years ago (it really helped!) but try to exercise some restraint and don’t drink any caffeine after lunchtime. If you’re a coffee junkie, start by cutting back a little earlier each day to avoid a major caffeine-‐withdrawal headache.
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Already doing some of these? Great! Now: Get better. I believe in you!
engagement, or travel). Some of these hurdles can be eliminated right away by simply scheduling your workouts, just like you would a doctor’s appointment. In my calendar, for Change your instance, I have workouts surroundings. Does it get scheduled Monday through too hot in your bedroom at Saturday from 7-‐8am. I do night? Lower your my best to treat those times thermostat before bed, like they are appointments open a window, turn on a that must be kept, no fan—whatever it takes. matter what’s going on. Too cold? Invest in some cute PJs and wool socks. It might take you a couple Live on a noisy street? Get a weeks to get a routine white noise machine, or an going, but if you commit to air 6ilter that creates a low working out and treat it as hum. And buy ear plugs. a priority, it will get easier. Other people in your life will learn to plan around Plan for exercise It’s not uncommon to set your valuable workout a healthy exercise goal, and times. And just like then fall 6lat when we hit a establishing a sleep hurdle (like an extra-‐long schedule, your body will get into a rhythm that work day, a social
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HOW TO BE A CHRONICBABE A BEGINNER’S TOOLKIT
You are your most important asset. Love yourself. Value yourself. expects exercise—you’ll even begin to look forward to it. Invent your own rituals Do you remember being a small child and having a bedtime ritual? It was probably very comforting to follow a predictable routine each evening. Well, it’s time to build a few of those little rituals into your day once again. The familiarity of a routine will bring you comfort and a feeling of control—something that’s often lost when we live with unpredictable illness. Here are a few ideas to get you started:
As RuPaul says, “If you can’t love yourself, how the hell you gonna love somebody else?” shower, meds, a healthy breakfast, and 15-‐20 minutes of stretching and yoga. It’s a nice way to ease into the day and when I do get to work, I feel relaxed and ready, not frantic.
Pampering: Pick an evening to designate as your personal pampering time. Grab your favorite polish color and do your nails, or put on a soothing facial mask. Take Morning: I used to get up and a bubble bath and settle in with a immediately sit at the computer, good book. Throw a good chick catching up on email until I was 6lick in the DVD player. Whatever done. Some mornings that could you need to feel pampered and take a couple hours! No more— now, when I wake up I start with a relaxed—make this a weekly habit Sometimes, a little outdoor time is all you need to refresh and get feeling better. Give it a try today.
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HOW TO BE A CHRONICBABE A BEGINNER’S TOOLKIT
Try this: Make a list of 5 things you’re thankful for right now. Here’s my list today: 1. New nail polish colors 2. The sunrise 3. Raspberry smoothie for breakfast 4. Magic marker stains on my fingers cuz I just made something 5. Comfy pillows on my bed
Take moments throughout the day... ...to be thankful for what you DO have. and don’t allow yourself to be disturbed. You deserve it!
Craft beautiful reminders When I’m feeling my worst, it’s hard to remember the good things I can do to feel better—I’m focused on my pain and exhaustion, and it’s hard to get out of my own head. To help, I created some reminders that symbolize positive in6luences. A few examples:
Evening: Just like my morning ritual, my evening ritual involves some self care and relaxation: I moisturize, take my nighttime meds, stretch, and spend some quiet time winding down with a good book. I do this around the same time each night, and I appreciate the predictability I wear a locket almost every day that of my routine. contains a tiny message of af6irmation. I 13
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HOW TO BE A CHRONICBABE A BEGINNER’S TOOLKIT
Change isn’t easy. It takes courage. You’ve got it! know, it sounds cheesy—but who cares? It helps me feel better, and it’s portable. In my of6ice, I framed a quote from a letter written by artist Sol LeWitt to fellow creator Eva Hesse, something funny and comforting that always makes me laugh and feel less stressed about doing “perfect” work. It says, in part: “Stop it and just DO…Try and tickle something inside you, your ‘weird humor.’ You belong in the most secret part of you. Don’t worry about cool, make your own uncool...” I love this advice!
Start small. Find one thing you can change today to make your day-to-day life better.
Seeing that every day reminds me to be present, to practice mindfulness and enjoy each positive moment, even when it’s surrounded by bad stuff. It helps me remember that things aren’t always bad.
You can take any object and turn it into a positive reminder. Pick a favorite ring and wear it on tough days to remind yourself to call a On my nightstand, I have a tiny friend for support. Buy a beautiful phrase encased in a beautiful handmade beaded frame, that says pillowcase for your bed and use it as a reminder to follow your simply: “each moment counts.” Try doing something outside your comfort zone. Try hugging a public sculpture. It’s totally fun. Make sure someone snaps a pic.
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HOW TO BE A CHRONICBABE A BEGINNER’S TOOLKIT
bedtime ritual. Use anything!
Change is uncomfortable, so if you feel a little itchy, it’s OK. It really is.
Create a sanctuary Find a spot in your home and turn it into YOUR space. You may live in the tiniest apartment, or in a house crowded with family, but you’ve GOT to carve out one little spot. Maybe it’s your bedroom, maybe it’s part of another room—make it yours. Decorate your sanctuary in a way that’s pleasing and relaxing. Close it off from the rest of your home so you can go there and chill out.
day to meditate or just relax.
Cut yourself some slack Last but not least, I want to remind you Even if it’s just a corner of to be cool with your living room, place yourself. A lot of this something there—a candle, may be new, and it a photo, a pillow—that may take time to reminds you that it’s your adjust. That’s OK. special spot. Then use it! Love yourself enough Take a few moments each to be patient.
Breathe deep and remind yourself that this difficult time of change is all for an amazing reason: To help you kick ass!
If you’re looking for a great place to start, check out Chris Germer, PhD. His site Have you ever tried (www.mindfulselfcompassion.org meditation? It’s not just for /meditations_downloads.php) eastern philosophy gurus. offers many wonderful 10-20 In fact, many of the world’s most minute meditations that walk successful celebrities, scientists, you through the process. I listen inventors, politicians and to one of them every day! philanthropists credit meditation Give it a try. And let me know for their success. what you think!
Meditation. Good for: Mind. Body. Soul.
You don’t have to go far to find sanctuary. Close your eyes. Breathe. You’re home.
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HOW TO BE A CHRONICBABE A BEGINNER’S TOOLKIT
Strengthen your foundation: How to build your support team Go team! Your team, that is. Team (insert your name here). Many chronic illnesses can be isolating, especially when they take a person who is highly active and limit them to a large degree. When you feel extremely limited, it’s hard to 6ind the motivation to get out there and connect with other people, knowing you can conserve precious energy staying home and watching re-‐runs of The Gilmore Girls. I know—I’ve been there. But there is a whole team of people surrounding you, full of individuals who can help you in ways you never imagined before— if you’re open to it. Learn how to tell people what’s going on, and ask for what you need.
Building a support team requires some give and take. For us independent Babes, the concept of asking for what we need can seem… icky. Many of us belong to a generation of absolute go-‐ getters and it’s hard to accept that we need help. But you’re gonna have to get over that, chicks. It’s time to express yourself! Start with one person, someone close to you. Find a close friend, someone you know from church, your spouse or partner, your sister or brother, your mom. Make a date to talk, and explain what’s going on with you. Don’t drown your pal in speci6ics and gory details—offer an overall picture of your health
Your support team is there to keep you going when it rains, when it’s cold, and when it’s dark. Don’t be afraid to lean on them for support.
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HOW TO BE A CHRONICBABE A BEGINNER’S TOOLKIT
Who’s on your team? Make a list. Add anyone who helps you. Ever. condition, and how you’re feeling about it. Just the simple act of telling another person can offer big relief. And the comfort they can provide, even if it’s just a gentle hug, or an “I hear you and I’m here for you,” can feel wonderful.
During one of my recent moves, about a dozen people came over for a “packing party” and helped me pack the entire apartment. After I moved, another friend came over one night and helped me unpack the whole kitchen. (I fed everyone a nice dinner and drinks in return, and I’ve That person is now on your “team.” You shared all our saved packing boxes and don’t have to tell her that (although she tape guns, too.) Now that’s some might like to know!), but remember it for incredible help! yourself. You may even want to start a list (keep it handy). When you’re ready, start adding to Being part of a team isn’t a one-‐sided your team deal—you need to be ready to reciprocate. No need to go crazy—a couple people If you call a team member for support, will do. Take your time, and be thoughtful think about what you can do in return. abut your choices. Pick people you trust, Baby-‐sit? Bake them a cake? Proofread who you think will be empathetic, and their resume? Walk their dog? Or maybe keep at it. Soon you’ll have a nice circle of just listen to their woes one afternoon friends and other folks you can call on in over coffee? These are bonds you’re times of need. As an example, I present building, and they’ll be strong if your Team Jenni: relationship goes both ways. Practice asking for what you need. This might be the most challenging part of the “team” building process. If you 6ind it tough, start with something small. Ask your girlfriend for a ride to the airport so you don’t have to take public transit. Ask your husband to take a turn with the laundry or other chores if you’re having a bad day. Start small and practice, and soon enough it won’t feel as awkward. It took me a couple years to gather my team, but it was worth it. (And my team is constantly in 6lux; I add people who are awesome, and dump people gently when it’s clear they’re not awesome for me anymore.) My team rocks!
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HOW TO BE A CHRONICBABE A BEGINNER’S TOOLKIT
“Team Jenni” is a long list of folks. Your list is likely bigger than you think! Friends. They make me laugh so hard I pee my pants. They show up to parties with home-‐baked goodies. They call to see how I’m feeling, they call to see if I want to go for sushi. They give me their seat when my tootsies ache. They call me on my B.S. They're the biggest part of my team. Family. Some days I adore them. That's what unlimited-‐minutes plans are for. Some days I want to strangle them. That's what caller I.D. is for. But when it comes down to it, I know they would back me up in a 6ight. My boyfriend. He is my partner, my friend, and an amazing dude. Primary care physician. He’s been my doc for 15 years. We’ve
built a solid trust, and he knows me backwards and forwards. literally. Pain doc. I’m lucky to have the Rehabilitation Institute of Chicago (RIC) just a few minutes away, and my doc’s the head of the pain program there. They’re not ranked the best rehab hospital in the U.S. for nothing. Psychologist. Yup, I have a shrink, and she is super cool. Another member of the pain program at RIC, she works with the other folks there to help me manage my pain. Among other things. Occupational therapist. Patient with my quirks and creative with her approach, she’s one of many excellent physical and occupational therapists I’ve seen.
I bet you have a ton of members on your team: The mail carrier. Your dog walker. The pharmacist who is always kind. They’re everywhere!
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HOW TO BE A CHRONICBABE A BEGINNER’S TOOLKIT
Your team is there for you. And you’ve got to be there for THEM. Beauty queens. Nothing can boost your self-‐esteem like a funky hair color and cut. And I treat some of my most pain-‐prone parts, my hands and feet, to manicures and pedicures when I can. House cleaner. I resisted paying for cleaning services for a while, and now I’m kicking myself. In just a few hours, my house cleaner does the work it would take me a whole weekend to do. I no longer exhaust myself so my bathroom sparkles. Business coach. Since working with her, my business is stronger, I feel more balanced, and I know I’m learning how to embrace creativity in all my actions.
Is that an awesome list, or what? It’s no accident. I’ve worked hard to build it, and almost everyone knows that they’re on “Team Jenni.” They seem to love it, and they know how much I appreciate them—and I feel great knowing they’ve got my back. You can have the same kind of incredible team in your life. You just need to start thinking about people in a new way, and be prepared to give back in ways that make sense for you. You won’t regret it!
Building a good team also means benching the bad players There are bound to be people in your life who just exude negativity, and part of Computer Hixer. He’s saved my tush a few crafting Team You is minimizing—or times, even enforcing cord control so I eliminating—their in6luence. don’t have to crawl around on the 6loor untangling stuff. This is not the easiest thing, especially for women, who are taught almost from Accounting genuis. She has saved me birth to “play nice.” But the skill of creating money, helped me plan for boundaries with people, and weeding out homeownership, and given back dozens negative forces, is one that will serve you of hours I used to waste doing my taxes. well in all areas of your life. Financial planner. He got my accounts ship-‐shape and handles all the little details so I can focus on fun ways to spend my money. (And save some, too.) Creative genius pals. A 6leet of graphic designers, web developers, photographers, writers, marketers… a bunch of folks with whom I’ve traded services and advice. I don’t know where I’d be without them!
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HOW TO BE A CHRONICBABE A BEGINNER’S TOOLKIT
Make new friends, but keep the old, One is silver and the other’s gold. Take some time to think about OK, that’s all fine and good. the people you know. Are there But if someone’s being a folks whose phone calls you always jerkwad, dump ‘em. If old dread? People you avoid at social friends can’t handle your functions? Even worse: people who ChronicBabe-ness, show blatantly disregard your needs or them the door. limitations, or have no empathy for your situation? People who tell hard—I’ve had to do it myself—but you to “get over” your illness or in the long run, you’ll be better off. “suck it up?” *This kind of work is all about forming good boundaries, and I recommend a couple of excellent books on the subject, both by Anne Katherine. Boundaries: Where You End and I Begin is a great I’m not telling you to run out and introduction to the concept of setting boundaries, and Where to announce to someone that your relationship is over, but you should Draw the Line: How to Set Healthy start thinking about re-‐prioritizing Boundaries Every Day is a great follow-up with lots of practical your time and weeding out advice and strategies. negative people. I know this is Those people need to get bounced, big time. They are no good for you, and the sooner you minimize or eliminate their presence the better you’ll feel.
Talk to your friends. Explain how you’re trying to live a more awesome life. Involve them in your process. I bet they’ll love your new outlook! If not, BUHBYE.
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HOW TO BE A CHRONICBABE A BEGINNER’S TOOLKIT
Record-keeping 101: A big stress-buster There’s nothing like a big stack of and keep everything 6iled in one binder. medical bills—or worse yet, a call from a (Or keep one binder with bills and collections agency—to destroy your peace related paperwork, and another as a fact of mind. But when you’re sick often and 6ile with magazine clippings and other struggling to accomplish the most basic research.) daily tasks, the extra work of staying • Some people 6ind it easiest to have one organized can feel like a chore. The folder that holds all their medical trouble is, neglecting personal information chronologically. (An organization can cause increased stress, alternative is to designate a folder for aggravating your chronic condition(s) and each month in the year.) making you feel even worse. • If you see lots of providers, you may want a different folder for each doctor. At the end of this toolkit, I’ve included • If you’re a real frequent 6lyer at the some templates and structures to help get hospital, you may want to create a folder you organized. Yes, it will take a little time for each hospital stay. and work up front to get this system • If you’re feeling creative, go for color-‐ started. But in the long run, it will simplify coding! Use this as an excuse to go wild your daily life and reduce stress, which is at your of6ice supply or craft store and good for your physical and emotional make your system something fun to use health. Getting more organized will also and look at. Why not inject some positive make it easier for other people to help you energy into an otherwise yucky task? in times of need. How to start getting organized: Your 6irst step is to commit to being organized. Sound simple? For a lot of people, this is a real hurdle. Are you the Babe who keeps all her receipts in a shoebox under the bed and then freaks out at tax time? I’m talkin’ to you, girl! Create a Hiling system for your health- related paperwork. • If you already have a 6iling cabinet, this might be as simple as designating a few 6ile folders that hold your bills, medication inserts, test results, 6itness guides, etc. • You may want to buy a binder, some tabbed dividers and a three-‐hole punch,
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HOW TO BE A CHRONICBABE A BEGINNER’S TOOLKIT
Designate a place to put that paperwork. • This place is not on or in your nightstand. In fact, it should NOT be in your bedroom at all if you can help it. This is stressful stuff, so keep it away from any place you consider a restful sanctuary! • If you already have a place for your household 6iling, plug your health 6iles in there. (If you don’t, maybe it’s time to get that other stuff organized, too.) • If you’re feeling • If you must hide your uncreative, grab a paperwork under your girlfriend and brainstorm bed, consider using a ideas for getting handle-‐top plastic box so organized. (Chocolate will it’s easy to slide in and probably help get the out. The last thing you creative juices 6lowing. want is to pull a muscle Or some good music. lugging around a bunch of Uh-‐huh.) paperwork. • That same girlfriend (and • Pick a spot to archive maybe a few more) would older paperwork (like a probably be happy to basement or storage come over for an hour and space), and plan to clean help sort through all your out your 6iles every past paperwork and get January. you organized. Mix a batch of margaritas and Enlist the help of others. make it a mini party. • If you share a household Filing Fiesta! (and record-‐keeping) with • If all else fails, check out a spouse, kids or others, my favorite book on make sure they’re clear on personal organization: your new system. Don’t let Organizing From The them put your newly Inside Out, by Julie awesome organizational Morgenstern. system into disarray!
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Once you embrace the habit of tracking, you’ll see it has enormous value. Use my handy templates. I’ve created four different templates you can print as many times as you want. Use one or all, and adapt them to 6it your particular needs. (They’re included as attachments at the end of this toolkit.) Daily Health Journal: I use a journal to track lots of things every day: what I eat, how I sleep, my workouts, my state-‐of-‐ mind. Use whole sheets to hold two days’ worth of entries, or cut the pages in half to make smaller sheets. Use the journal to track patterns, to inspire yourself to try something new each day, to inform your health care providers of habits and trends. Using a daily journal is one of the best things I’ve ever done for my health!
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HOW TO BE A CHRONICBABE A BEGINNER’S TOOLKIT
Another fun way to document: Photos. Practice the art of the selfie. It can be a fun way to see yourself in a new light!
Oooooohhhh handy templates! Print ‘em. Use ‘em. Share ‘em. Health Care Providers list: Keeping contact info for all your health care providers handy is not only easy for you, it also makes it easy for people to help you in an emergency. In addition to the basic contact info for doctors, you might also want to keep numbers for admitting, testing and billing departments. (I keep all these numbers in one place, which is handy when I’m too foggy to remember everyone’s names.)
you forgot one? Worse: have you ever been in the E.R. and not been able to tell emergency caregivers what medications you’ve taken? This list will eliminate the guesswork. I keep a small copy in my purse and on my iPhone at all times.
Important Phone Numbers list: This is your “break glass in case of emergency” list. Complete the list, and keep a copy in your wallet or handbag. Give a copy to a couple people you’re close to: your best friend, your spouse or Medications list: partner, your roommate, your mom— Have you ever been at a doctor’s whoever seems most appropriate (and appointment and had to recall from memory the exact dosage and names of all responsible). Include home, of6ice and cell your medications, only to realize later that numbers as available. Update as needed. 23
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HOW TO BE A CHRONICBABE A BEGINNER’S TOOLKIT
Fun. You remember what that is, right? Being sick is a drag. It can drain When we’re sick all the time, all your enthusiasm, and suck out it sucks. There’s no nice way energy you would put toward to say it, right? BUT we can doing fun stuff. If you’re going also have fun. That’s why I to be a ChronicBabe, you’ve got adore dirty jokes. Fart jokes. to start learning how to make room Boob jokes. Bring ‘em on. No for fun again. matter how bad I feel, they Maybe you can’t do everything will ALWAYS make me laugh. you used to do, but that doesn’t mean there aren’t ways to have - Love, 12-year-old Jenni ;) fun, even when you feel cruddy. Some ideas: Plan a pedicure party. Some nail salons will do in-‐house Call a funny friend. parties, where they bring their This is easy, and takes almost no tools and come to you. Grab a energy. Call a funny friend (I hope couple girlfriends and chip in. One she’s a member of your Team!) and Babe can bring beverages, another tell her you need a laugh. She can snacks, and you provide your living tell you a dirty joke, make fart room and some cool tunes. It’s a noises, read to you from the low energy way to spend an CraigsList ads—I don’t care, as afternoon or evening with people long as she makes you giggle. you love, while pampering yourself.
I love a goofy joke. Especially a public one. Laughing out loud releases endorphins that relax you AND other people. Let them in on the joke!
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HOW TO BE A CHRONICBABE A BEGINNER’S TOOLKIT
Rent a chick Hlick. Watch it on your own, or invite a friend over. Nothing perks me up like watching a goofy movie! Dive into a stack of books. In my house, there’s always a stack of unread books just begging for attention. If you’re the same, grab one and settle in. It won’t be the wildest night of your life, but reading can be a great distraction from your troubles. Same goes for that stack of magazines that’s growing on the coffee table. Cook a meal with a pal. It’s fun to experiment, and even more fun when you do it with a friend or two. Grab a recipe you’re dying to try and give it a whirl. If it sucks, you can always order take-‐out.
Endorphins released when we have fun are natural pain killers. (Oh, and when we have sex, too.) YES!
Get creative and make something. I like to make beaded jewelry; my pal Natalie likes to knit; Cinnamon likes to sew…these are all great ways to distract yourself from negative circumstances. Bonus: you get a tangible result, something you can use or give as a gift. Show off your sense of humor. Sometimes you just need to blow off some steam and laugh about it all. I like to wear funny t-‐shirts to the gym, especially ones that poke fun at my illnesses. Great examples are at MedTees (www.cafepress.com/medtees), No Pity Shirts (www.zazzle.com/rickybuchanan) and The Nth Degree (www.thenthdegree.com). Rally your team. An old episode of “Dr. 90210” (I know, I know, trash TV—but it relaxes me!) featured the story of a young woman who needed breast reconstruction (she had chosen to have a prophylactic double mastectomy because many women in her family had died of breast cancer). Before surgery, she gathered her girlfriends and had a cupcake party—with a prize for the girl who created a set of cupcakes that most resembled boobies. Now that’s teamwork!
What is that crazy phallic thing above? It’s a huge source of entertainment for me & my friends. It’s called a “Banana Bunker,” for carrying bananas in your purse. Google it. You’re welcome.
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HOW TO BE A CHRONICBABE A BEGINNER’S TOOLKIT
THANK YOU!
Have some tips we missed? Shoot them our way and we’ll add them in to the next edition.
Want to be an extra special helper? Donate today (even $5 helps!) and your funds will help keep our forum strong.
We can’t do it without you. Become part of the ChronicBabe community. This is a community because YOU are a part of it, and there are so many ways to connect with ChronicBabes. Check out the website (www.ChronicBabe.com) where you can read articles that motivate or help you learn to deal with chronic illness. Make sure to 6ind the forum (www.chronicbabeclub.ning.com) where you can offer solutions and tips of your own or just get something off your chest. Also, make sure to sign up for the ChronicBabe newsletter at the website, where we share lots of freebies and announce upcoming projects!
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You can chat with us on social media channels like Twitter (@chronicbabe) & Facebook (www.facebook.com/ chronicbabe), to get fast health news and other babelicious updates. Follow us on Instagram (www.instagram.com/chronicbabe) and Pinterest (www.pinterest.com/ chronicbabe/) for cute pictures that lead to smart thoughts and articles. Finally, check out our Zazzle shop (www.zazzle.com/chronicbabe) for all kinds of ChronicBabe swag! That should keep you busy. See you online! - XO, and thanks! Editrix Jenni
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HOW TO BE A CHRONICBABE: PRINT-ABLE TEMPLATES
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Daily Health Journal Date: Wake-up time:
Bedtime:
Breakfast: Lunch: Dinner: Snacks: Medications: Relaxation: Fun: How I feel physically: How I feel emotionally: © 2013 ChronicBabe
Daily Health Journal Date: Wake-up time:
Bedtime:
Breakfast: Lunch: Dinner: Snacks: Medications: Relaxation: Fun: How I feel physically: How I feel emotionally: © 2013 ChronicBabe
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© ChronicBabe.com 2013. Feel free to share with friends, but contact us if you want reprints. Thanks!
Health Care Providers & Contact Info for: ___________________________ Current as of: Name:
Specialty:
Phone, Email, and/or Address:
© 2013 ChronicBabe
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Medications List Current as of: Medication:
Dosage and prescribed use:
Supplements:
© 2013 ChronicBabe
Important Phone Numbers Name:
Relationship:
Numbers:
© 2013 ChronicBabe
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