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A brief list of the ways in which I’m flared up a.k.a. fibromyalgia is a beast but I’m still trying to be #AWAPwednesday

Posted by on May 3, 2017 in acceptance, featured, pain, resilience | 21 comments

Babes, you know my usual way is to share lots of uplifting videos and posts, but today it’s less about uplifting and more about realism and a reminder that you are worth taking care of. Some days, it’s enough to get on the computer for a bit and clear some emails. Today, for instance. That’s about all I can manage, work-wise. And this here blog post. That’s what AWAP (As Well As Possible) looks like for me today. I’ve lived with fibromyalgia for almost 20 years now, and I’m amazed at how disabling it can be. After many years of trial and error, I feel like I have it pretty well managed and I’m mostly able to work normal hours and get my business done. But on days like today, I am humbled by this ridiculous condition. I’m flared to the max; it’s like every system in my body is inflamed. Here is a brief list of the ways in which I’m flared up by the fibro-beast today, starting from the feet up: My right foot is sore in a muscular pain way, making it painful to walk. I think it’s because I did some machine sewing last weekend, using the pedal to run the machine as usual. How dare I make crafts! A bruise I got from my shoe being too tight (!!!) has spread over most of my ankle. I’m in dire need of a pedicure. (Oh wait, that’s not fibro’s fault.) My knees are sore, and I have a tingling sensation in my right thigh—and not in the fun way. My lower back is stiff and sore, and no matter how many yoga poses I try, stretches I do, or heat I apply, I can’t get it to calm down. My hips are stiff and crackly. I tried doing some belly dance moves this morning to open them up, but no dice. (Although I think I looked pretty cute while doing them!) My skin is itchy all over. There’s no evidence of a rash, and I’ve applied anti-itch cream a bunch of places, but it isn’t making a difference. In any case, a full-body dip in calamine lotion is just not an option today. My shoulders and neck are stiff and sore, and that’s translating down into my hands, which are also very sore and unhappy that I’m using them on a keyboard. Too bad, hands! I have an area of irritation on my stomach that has no visible explanation, but is warm to the touch, and not happy that I’m wearing pants with a waistband. I’m dreaming of a mumu right now. Sounds are super loud to me today. My husband sneezed earlier and it...

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3 Weird Sounds to Make When You Feel Bad #AWAPwednesday

Posted by on Nov 2, 2016 in coping, featured, humor, inspiration, pain, resilience | 11 comments

When I’m doing my morning yoga routine, I hurt. And I tend to moan and groan a little as I ease into poses. But sometimes, I get so sick of hearing myself moan and groan. And on days when I feel my depression creeping in on top of the pain and fatigue of fibromyalgia, moans and groans can make my heart hurt, too. So I came up with three fun sounds to make instead to crack myself up. I think they’ll help you, too—at the very least, you’ll have a laugh! *AWAP = As Well As Possible Now it’s your turn: How do YOU crack yourself up when you’re struggling? 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 making weird sounds) 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? Sometimes when I’m doing my morning yoga routine, I hurt. OK, fine – let’s be real – I always hurt when I’m doing my morning yoga. And I tend to moan and groan a little as I ease into poses. My beau, Joe, is used to this. Sometimes I feel bad, because I know it must make him feel uncomfortable to hear me groaning so much – but when I say “I’m sorry,” his response is always, “babe, don’t apologize – you’ve gotta express that pain so you can let it out.” (He is so smart!) But sometimes, even I am sick of hearing myself moan and groan. And on days when I feel my depression creeping in on top of the pain and fatigue of fibromyalgia, moans and groans can make my heart hurt, too. So I came up with three fun sounds to make instead to crack myself up. The sounds are really simple. First: cartoon horn. Ah ooo gah! Just imagine shouting that as you feel pain, instead of sighing, or moaning. Ah ooo gah! Next up: karate sounds. Hiyah! Just imagine you are bending over to pick up something and your back twinges. Instead of groaning, a little hiyah! can really hit the spot. Finally, try this one out: Hey-oh! This one is just...

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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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A Letter To My Sister With IBD

Posted by on Sep 2, 2016 in acceptance, coping, fears, featured, friends and family, guest author, inspiration, pain, relationships, resilience | 8 comments

A photo of you I took in August. We woke up at 5am for sunrise on the beach.   To my 17-year-old sister with Ulcerative Colitis (UC): When you go off to college soon you will have days when you aren’t able to go to class. When you email professors to let them know, you’ll be too ashamed to tell them what’s really going on. You’ll tell them you’ve been throwing up all night and you’re afraid to leave the bathroom and sit in a classroom. The second part will always be true – you will be on hour three or four of sitting in the bathroom and you are afraid to leave it. But we both know our inflammatory bowel disease (IBD) doesn’t make us throw up. When people ask you about your health-related absences, you will be vague and say: “Sorry I was in the bathroom for so long. I was sick.” And if they prod it will become: “Yeah, totally throwing up for like 30 minutes. Super gross.” It’s not technically true. But it you will be less afraid to say that than the truth.   I called you in April to interview you for my final article for my final journalism class of college. I had decided to look into why I felt too ashamed to talk about my true Crohn’s symptoms. I read books on the psychology of shame, interviewed our GI doctor and a psychologist, talked to friends and acquaintances with Crohn’s and UC (that included you!) and I found an overarching trend of shame. The belief that we are “lesser,” that we are somehow “dirty” and “not whole” because of our symptoms, pervaded almost every interview with other IBD patients. The shame here is a painful belief that one has a failure of being, that one is too flawed to be wanted or valued by others and that we will be abandoned. My research made a lot of sense to me. I knew one of the main reasons I was too ashamed to talk about my symptoms or my illness in general was that I had a reputation to uphold: that of a person who has not failed at being, who is not too flawed to be valued by her peers. I was afraid that if I spoke frankly to friends or, most terrifyingly, boyfriends, they would leave me. This fear of abandonment is at the core of our shame. I never told you that after I interviewed you on the phone, I sat in my bed and cried. When you were diagnosed at age nine with UC, four years after I had been diagnosed at the same age with Crohn’s, I...

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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 Upwork.com and Flexjobs.com 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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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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