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5 Reasons Why Leaving My Job and Working From Home Was The Best Decision I Ever Made

Posted by on Aug 15, 2016 in acceptance, career, coping, Creativity, featured, guest author, inspiration, pain, practicalities, resilience, self care, Work | 1 comment

This post was guest-written by Jennifer Kain Kilgore. Find her at her blog, Wear, Tear, & Care here. Hi! My name is Jen, and I’m a 29-year-old attorney, editor, writer, and patient advocate. I have spinal fractures from two car accidents that required two cervical fusions. The jury’s out on whether I’ll need more surgery. I worked in an office for three and a half years after law school. At that point I was dealing with the fallout from my first car accident, which happened in 2004 and decimated my thoracic spine. Law school happened, and then my job, and then… another accident. That second accident became a barrier to a normal life. Eventually I decided to leave my job and work from home. Here are the reasons why it was the best decision I ever made. My health comes first now. I was living the dream: I had a legal job that started at 8 am, ended around 6 pm, had great coworkers, and allowed for a life. My bosses were cool. During my second year, however, I had another car accident. The moment the pain set in, I knew I’d eventually have to leave the traditional workforce. In the year before I left I suffered from increasing pain (which caused repeated vomiting and a hernia), insomnia, loss of control of my hands, limping, muscle spasms, and loss of my ability to focus. In the end, it wasn’t worth it. Now, I telecommute from a recliner. I schedule my day around doctors’ appointments. I work a schedule that flows with when I’m feeling best. Before, there wasn’t time in the day to work on my health, so it controlled me. I am much happier.  The “What should I do?” questions wore down my family –  especially my husband. I steered every conversation in that direction because I wanted someone to say, “No, you can’t work.” I wanted someone to make that impossibly hard decision for me. My husband begged me to think about my health while I thought about finances. How could I leave without a backup plan? What if I made the wrong decision? So I did what is generally inadvisable. I started a side-hustle, working on sites like and to create a cushion for when I made the jump. I don’t know how I did that, because the level of pain at that point was inhuman. I think it’s because I knew that leaving was inevitable. Now, having the weight of that decision off my chest feels unbelievable. I can breathe. I can think. And with that, I can work. I’m not paralyzed. My body doesn’t rebel. The longer I stayed in the office, the more my body fought....

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I Am Sew Supportive

Posted by on Aug 1, 2016 in acceptance, community collab, coping, Creativity, featured, inspiration, practicalities, resilience | 3 comments

Post written by ChronicBabe Tracy Mooney   About a year and a half ago, I was talking to one of my sewing buddies on the phone. We both have autoimmune disorders and we were discussing the ways in which we set up our sewing rooms to accommodate our bad health days.   She said something like “It is unbelievable what we are willing to do just to keep sewing!”   I countered with “But we have already given up so much! Why would we give up something that brings us so much joy???”   As a senior editor for the quilting magazine Generation Q, I travel to buyer’s conventions like Quilt Market and VDTA/SDTA. I found myself often saying to manufacturers “You know, you can market this to people in wheelchairs, people with tremors, and people with arthritis.” Somewhere in these moments is where it became my unconscious mission to help our community keep sewing.   I realized the importance of continuing to do the things we love when faced with chronic illness. Being diagnosed with an incurable disease and facing chronic pain on the daily is incredibly difficult to process. It is so easy to fall into depression. It is so easy to give up hope.   Perhaps you sew, or love something else. Perhaps you are a runner, build models, paint, dance, garden, love woodworking, or car restoration – it doesn’t matter what your hobby is – it just matters that you keep doing it.   For me, I look for ways and products that help sewing enthusiasts modify the way they sew. This can be special glasses that help them see better, guides that fit on their machines to help keep the fabric steady, or even managing break time with ice breaks to minimize pain. What can you do to modify your favorite hobby ChronicBabe-style?   Recently, a friend of mine was experiencing a flare and found that she couldn’t join her running club. She was worried that she was missing out on social time with her friends and that they would move on without her. I suggested she look at other ways to participate. So she contacted the organizer and found they needed help setting up drinking stations. She was thrilled. She could still visit with her buds even if she couldn’t run because of a flare.   Some of my readers love quilting, but when they are in a flare don’t have the energy or physical stamina to sew. One creative ChronicBabe said she would stroke and refold her fabric collection. Another said she would sort and choose fabrics for her next project.     Be creative! Think outside the box! What is it...

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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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