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Sometimes, you have to ask yourself to dance (a few words on the suckiness of self-judgment)

Posted by on Nov 15, 2017 in acceptance, coping, resilience | 13 comments

It’s mid-afternoon, and I’ve got a roaring headache. My phone just crashed in the middle of an important call. My back is sore, and I’ve still got tons of work to do—but I can tell my body needs a nap. I crawl into bed, setting the alarm for an hour later…and lie there fitfully, unable to drift off to sleep. Eventually, I get up and grab a snack and a glass of water and sit down again at my desk. Now I’m even further behind than I was before, and I still feel unrested. I’m probably going to have to work well into the evening.   Or: I can ask myself to dance.   No judgment See, a friend of mine helps run a women’s dance group here in chicago called DDPP: Dance Dance Party Party. The group has three rules: no boys, no booze, no judgment. Twice a week, folks meet and take turns DJing, dancing together for an hour. You can dance however you want, and you can opt out of any song. It’s freakin’ fantastic. That part about “no judgment” is the thing that’s getting me on the dance floor tonight. Those two little words are a reminder to me that no matter how I show up, no one there is going to judge me. That’s especially important tonight, because I’m confident I’ll have to sit out a bunch of songs, or at least dance really slowly, perhaps just swaying or bobbing my head to the beat.   No self-judgment I have DDPP in my calendar as a repeating appointment, every Wednesday night and Sunday afternoon, but sometimes I don’t go because I’m tired or sore and I won’t be able to dance the way I want to. Or the way I should be able to dance. Hear that? That is the sound of nasty self-judgment, and sometimes it creeps into my head and stops me in my tracks. I used to dance every weekend, hitting the club scene in Chicago and staying out til all hours. I prided myself on my ability to dance well past midnight, sometimes multiple nights a week. Since I got sick more than 20 years ago, I’ve had a really hard time accepting the loss of dance in my life. It’s not that I can’t dance at all—I just can’t dance to more than a couple songs at a time, or I can’t do all the moves I want to do. But that self-judgment is so limiting! It has kept me from pursuing a thing that brings me joy.   Tonight, I’m gonna ask myself to dance Yes, I’ve got work to do…but I know the quality of my work...

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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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You Don’t Need Wheels To Be A Derby Girl

Posted by on Oct 3, 2016 in acceptance, coping, Creativity, featured, guest author, inspiration, resilience | 2 comments

This post was guest written by ChronicBabe Sandra Gordon.   The Olympics has just finished and we are all sitting on our couches, thinking it might just be time to get up and do something. But then we think that’s easier said than done… or is it? I have Crohn’s disease. I diagnosed when I was 16 – quite a long time ago. When my symptoms hit, I had just achieved one of my best finishes in a 3K cross-country run, was curling regularly, was only a couple of years away from a black belt in karate, and was taking lifeguard training. Once I became ill, the most exercise I got was a quick dash to the bathroom. Six months later, things looked pretty different – in a good way. I gave up running and changed curling teams, but continued with karate, albeit at a slower pace. How was it possible? Open discussion with my sensei about what I could do and what I needed help with. I was allowed to sit down when needed and dash off to the bathroom without notice. I never got that black belt but I did have fun, and that was the point! I have been able to lead a pretty active life through good medication, diet, and surgeries (eventually a stoma in 2005). But I also know that is not the case for everyone. There is also a big difference in changing your expectations when you are 16 compared to 30 or 40. Back to getting off the couch: Now, I am a 40-something adult living in the third country in my life and working in the fourth. I don’t do karate, curling is not a thing here, and running… only for the bus. So what am I doing now? Roller derby, of course! But not how you think. I am a skating official (referee). This short essay can’t fit all the fun I have! But I can tell you life is different on the other side of sport. Behind every sporting event there are officials. Sometimes you need to be more able-bodied, and sometimes you just need to sit in a chair and understand the rules and the game. There are people who handle stats and organize players and officials on the day; they don’t have to have the most able bodies. There are also people who, before the event happens, book the hall, arrange the contracts with the teams, and arrange for sponsors and treasurers. Some of those positions don’t even require you to leave your house, but they are critical to making sporting events happen.   Non-competitive options for sport: That is where you, as a ChronicBabe, can come...

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Laugh, ChronicBabe!

Posted by on Sep 26, 2016 in acceptance, coping, featured, friends and family, humor, inspiration, resilience | 3 comments

This post was guest written by ChronicBabe Elizabeth A. Delisi.   “He who laughs last, laughs best.” Famous saying…I don’t know who coined the phrase. I suppose it could be interpreted as a courageous act – you know, “Laugh and the world laughs with you; cry and you cry alone.” And there is no place more needing of a laugh than when a ChronicBabe is fighting a chronic disease. My dance with disease began in January of 2010, when I pointed the remote control at the television and noticed my hand was wobbling up and down. What the heck? The trembling in my hand continued to get worse, so I saw a neurologist and was diagnosed with Parkinson’s Disease in August of 2010. That was the day that my life, and my future, changed. My sister, who had accompanied me to the doctor, asked me how I felt about the diagnosis. I said, “I feel numb.” And to tell the truth, that feeling lingered for some time. I felt fine other than the tremor in one hand…so how could I have an incurable disease? Well-meaning people tried to get me to join support groups, but I turned them down. I was struggling with the diagnosis as it was. I was afraid if I saw people who were worse off than I was, farther down the disease’s road, I’d give up all hope. My attitude toward Parkinson’s started to change when I read three books written by a fellow Parkinson’s sufferer, Michael J. Fox. He spoke of how the disease gave him a chance to restructure his life and his priorities, to look at all the positives he had instead of focusing on the negatives. His words struck a chord with me, and I figured if he can be positive, so can I. It was easier said than done. The symptom that bothered me most wasn’t the tremor, the slowness of movement, the stiff muscles, the fatigue, the weakness, or the inability to focus. I could have laughed at them. No, my least favorite symptom was a nasty case of anxiety that popped up frequently, in all sorts of situations. And it was hard to laugh when I felt an impending sense of doom hanging over my head. But I had a husband, children, and grandchildren. I needed to do more than put on a brave face for them. I had to accept what I couldn’t change, and try to be light and happy as much as possible. The easiest way for me to project joy was to make what the kids always called “Mom jokes.” My husband, Dan, had “Dad jokes,” too, but his were of a different character....

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