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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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Choose Happy

Posted by on Jul 18, 2016 in acceptance, community collab, coping, featured, guest author, inspiration, resilience | 1 comment

Post written by ChronicBabe Tracy Mooney   It’s been three and a half years. Three and a half years since my diagnosis, trying to learn the limits of my body, and to learn the new “normal.”   And yet, in those three and a half years I still haven’t figured it all out. At least five days a week I still find myself wondering aloud why am I so tired? as if this is not my life. As if I don’t feel like this every day. This is my life, just as it is the life of every other person living with autoimmune disease.   At first I tried to fight it. I thought if I just did everything right I would get better. So I made changes to my diet, I drank water, I exercised regularly, I slept. And still my disease continued.   I tried taking herbs. I thought somehow there would be a magical combination of herbal tea that would somehow make me well. Then I realized that boosting my immune system just “boosted” my messed up immune system. Silly me! My immune system is broken.   I tried restricting my diet even more. I thought, there must be something I’m eating that my body is allergic to. If I just juice enough, or cut out sugar and dairy, or eat enough salad, I will get well!   When nothing made any difference at all, it slowly started to sink in. THIS IS MY NORMAL.   I am always going to be tired. I’m always going to be hurting. I am always going to be fighting swollen fingers and swollen joints. I am always going to feel like I’m thirsty. I’m always going to feel like I’ve got sand in my eyes. I’m always going to have to balance what I do every day so that I have enough energy for the things I really want to do.   For me, the lesson is about taking care of myself and learning to be kind to myself when I can’t do as much as I used to be able to do. This experience is about learning.   Each day I make choices, moment to moment. I make choices that help me feel better. I choose to rest. I choose not to engage with people or situations that stress me out. I choose not to take things personally.   I choose to do something that makes me happy, like sewing. I choose to listen to music that lifts my mood and makes me want to dance. I choose to use some essential oils in my space that help me relax or energize me or simply to make me...

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How I Maintain My Happy

Posted by on Jul 11, 2016 in acceptance, coping, Creativity, featured, guest author, inspiration, pain, resilience | 10 comments

Post written by ChronicBabe Amy Graves   In the Beginning… I’ve dealt with different types of chronic pain for as long as I can remember. I was diagnosed with migraines and seizures at the age of three; this meant that at an early age I had to learn how to manage pain. I trained myself to go to bed as soon as I felt a migraine coming. I learned what my triggers were for seizures and attempted to avoid them. I was lucky in that I still had a mostly normal childhood. Then, in 2004, I injured my left arm. As a result of that injury I was diagnosed in 2007 with complex regional pain syndrome (CRPS). Through three years and 13 doctors, I kept telling myself someone will figure this out. The pain will be cured and I will go back to normal. But the diagnosis brought with it the realization I would have to live in pain every day for the rest of my life.   The Realization that Sparked a Change My diagnosis left me depressed. How could I live with constant burning pain? My pain levels started increasing and the feeling of hopelessness was completely consuming. Then one day I was on the phone with my mom. I realized I had become a negative person – like her. I looked at her life, and I didn’t want to go down the same path. So I made a deliberate decision to reform my attitude. I altered my focus so finding the positive became a daily practice. This change in thought was not easy. It took at least a year before I was able to see the positive without having to stop and ask myself what is the silver lining? This does not mean I was – or am – happy all the time. When I lost the ability to work 20 hours a week I had to focus on the positive outcomes. I trained myself to look at the positives rather than focusing on the negatives, like losing money.   My Secret The key to me maintaining my happy is allowing myself to have bad days. I have days where I cry or get mad at the world. At the end of the day, I know it won’t solve my problems, but I feel better. You will exhaust yourself trying to be positive all the time. No one else can expect you to be happy all the time, either. When I have to deal with a problem, I let myself feel the necessary emotions, whether it be anger, sadness, or even fear. Once I am done, I sit back and analyze the situation. I focus on...

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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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8 Things People Say To Me About Crohn’s That Piss Me Off (And What You Can Say Differently)

Posted by on Jun 27, 2016 in acceptance, coping, featured, friends and family, guest author, pain, practicalities, ranting | 21 comments

Hi babes! My name is Alix and I’m a ChronicBabe summer intern. I was diagnosed with Crohn’s Disease when I was nine and have spent my life jumping from treatment to treatment and learning how to overcome the shame that accompanies inflammatory bowel disease (IBD) symptoms. Sometimes, even though usually with best intentions, friends of mine (or strangers) will ask me offensive or inappropriate questions about my Crohn’s. For all fellow ChronicBabes – this is for you to know you are not alone in this frustration. And for my friends and future strangers: tuck this away for reference.   1. WHAT I HEAR: My cousin’s friend has Crohn’s and went on X diet or Y medication. You should try it; I’m sure it will work for you. WHAT IT MEANS TO ME: You have the best intentions and you are trying to help but you don’t know anything about my medical history or my current diet regimen. You don’t understand how offensive it is to give treatment advice when you are not my doctor. WHAT YOU SHOULD SAY INSTEAD: My cousin’s friend has Crohn’s and finally found a diet-based treatment that worked for him/her. I know how hard it is to find something that works. I’m here if you want to vent.   2. WHAT I HEAR: My aunt had ulcerative colitis, too. WHAT IT MEANS TO ME: Either your aunt is dead or dealt with a different non-chronic illness but regardless it you haven’t done your research. Because ulcerative colitis and Crohn’s are lifelong illnesses it feels awful to hear you brush it off as something that can be cured. WHAT YOU SHOULD SAY INSTEAD: My aunt also has ulcerative colitis. (Or, in the case that she has passed away: My aunt also had ulcerative colitis. She passed away X years ago.) It’s an awful disease. I’m sorry.   3. WHAT I HEAR: You can’t eat gluten, lactose, or eggs? I totally understand. I’m a vegan and it’s so hard to find food sometimes. WHAT IT MEANS TO ME: My disease-based food restriction is equal in your mind to your lifestyle choice-based food restriction, which it is not. As nice as it is to try to sympathize with someone else’s food restrictions, it is beyond frustrating when someone who chose a lifestyle diet change tries to equate it with your disease taking all the foods you love away from you. WHAT YOU SHOULD SAY INSTEAD: You can’t eat gluten, lactose, or eggs? I don’t eat dairy or eggs either because I’m a vegan but I can’t imagine not being able to choose what to eat. It must be really hard.   4. WHAT I HEAR: You get such-and-such...

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Feeling Down? Here are some quotes to inspire you

Posted by on Jun 24, 2016 in acceptance, community collab, Creativity, featured, inspiration | 4 comments

Hey babes! You killed it on the question of the week this week! I took some of my favorite inspirational quote suggestions and turned them into pretty graphics. Print these out and hang them on your bedroom wall! Use them as your phone and computer background. There’s no such thing as being too inspired. Sometimes all you need to do is look at things from a different angle.   Dr. Seuss knows what’s up.   Sometimes less is more.   This is our intern Alix’s favorite inspirational quote. It reminds her that she is stronger than she thinks.   It’s all latin to me.   Hope these inspire you like they inspire me! Do you have any inspirational quotes you love? Let me know in the comments below!   All graphics made by Alix Kramer, ChronicBabe intern and proud...

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