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A little story about the value of long-term health care provider relationships

Posted by on Feb 14, 2018 in caregivers, coping, featured, health care providers, relationships | 10 comments

Hi! It’s been a little while since I posted on my blog; the winter holidays kept me busy, I’ve traveled a lot since then, and I’m coping with a handful of acute health issues…it all sapped my blogging mojo! But I’m slowly easing back into it. Today, I’m thinking about how valuable it is to have kick-ass health care provider relationships. I want to talk about why it’s important, and how you can cultivate your own. A handful of symptoms means a handful of health care providers 18. That’s the number of health care appointments I’ve had so far this year. 18! The high number reflects a variety of things: an injury that’s required a few follow-ups and special procedures; maintenance appointments like a mammogram; check-ins with my pain psychologist; a trip to a compounding pharmacy; and physical therapy appointments to try to turn around my flare-up. It’s been overwhelming, and it’s SO HARD to get any work done when I’m constantly running around! Not to mention the hospital parking fees I’ve racked up. Harrumph. It’s enough to make a babe grumpy. Across those 18 appointments, I’ve seen 10 different health care providers. Some were brand-new to me, and WOW is it exhausting to have to explain your whole history to a new person. Especially when you’re asking them to diagnose a tricky issue. (Like one thing I’ve had for the past week: extreme sensitivity in all of my teeth. Weird!) But some of those health care providers have known me as long as 25 years. It’s those appointments that really help keep me sane during this crazy-making time. Long-term relationships matter I’ve talked before about ways to strengthen your relationships with doctors and other health care providers. I’m sure you can guess some of the reasons, but let’s review: You don’t have to re-tell your whole medical history at each visit They can spot patterns in your symptoms you may not see You cultivate a sense of trust…in each other Your medical records are all in one place (or at least focused in a couple places) When you’re a little late, or they need to reschedule, it’s easier to manage and you can cut each other a little slack You feel more comforted and safe with them These are just a few of the reasons why long-term health care provider relationships are so important. Here’s a quick story about another reason why: My pain is unexplainable and scary, but my HCPs help I mentioned that all of my teeth have been hurting. For a few days, I tried to be patient and hope it would improve, but I finally gave in on Sunday and went to immediate care....

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Noelle Janka: Despite Chronic Illness, She’s Crafted a Career That Helps Others

Posted by on Nov 28, 2017 in featured, inspiration, Kick-Ass Sick Chick | 0 comments

It’s always great to meet a fellow ChronicBabe who’s managed to craft a career despite serious illness. Noëlle Janka is that kind of woman; she lives with chronic lyme disease and a couple other health challenges, but she’s still managed to find a way to work and help people. We interviewed each other last week about our work and other pursuits. Here’s my interview with her…I hope you’ll find it interesting and perhaps get inspired! One of the things Noëlle offers is group coaching, which I think is a great idea for those of us who have mega-high health care costs and limited money to spend on other things. She also has a thriving yoga practice. Now, before you flinch—yoga kind of gets a bad rap—you should know that we talked a lot about how yoga is more than just the poses. It’s a practice that includes mindfulness, breathing, awareness, grounding…it’s so fully encompassing, and customizable for your needs. And Noëlle also interviewed me! Here’s that interview. A Kick-Ass Woman with Chronic Illness Know another cool woman with chronic illness who I should interview? Let me know – jump in the comments below to share your ideas. Thanks! …and if you want to read another interview with someone super-cool, check out my conversation with Mary England from...

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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 | 14 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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5 strategies for facing the upcoming holidays with chronic illness

Posted by on Nov 9, 2017 in ChronicBabe Basics, coping, holidays, relationships | 7 comments

I used to really dread making it through the winter holidays with chronic illness. And I do mean “making it through”—that was the best I could hope for, never mind actually enjoying them! It felt like I had to claw my way through them.   All the ways the holidays can go poorly While it felt like everyone else breezed from party to party, I agonized about how to manage my limited diet when facing big, luscious buffets packed with things I knew would not feel good in my body. I watched in envy as friends wore cute, sparkly heels, while I crammed my pained feet into clunky boots that could accommodate the wool socks my Raynaud’s phenomenon-having tootsies demand. And I never felt like I had the energy I wanted as I socialized, and when I did, I would sometimes find myself without a lot to talk about. When you’ve gone through an extended period of illness, or fatigue, or depression, it can be hard to make witty small talk. And when it came to gift-giving, I frequently felt stressed out by planning, shopping, and wrapping. But mostly shopping: The malls! The driving! The carrying heavy bags! All while wearing a heavy Chicago coat in Chicago winters! I would count every penny and have to take deep breaths as I processed each purchase. Family was sometimes tough, too. While some family members are cool, some really don’t accept my health-related limitations, and that leads to a lot of awkward conversations and situations. It wasn’t all bad… I mean, I’ve also had some pretty great holidays. Decorating the trees, visiting my nieces, drinking hot cocoa by a toasty fire, sledding, goofing with friends. But let’s be real: The holiday season brings a lot of pressure. It’s hard not to succumb to the pressure to be everybody’s everything. We sometimes feel like our illness should take a vacation so we can meet the expectations of others. But that’s not how bodies work, babe. I know you know that, but the holiday season is going to try to make you feel otherwise. So let’s talk through a few changes I’ve made during recent years that have ensured my holiday season is much more enjoyable. These definitely have not removed all the stress, but they’ve minimized it, for sure. And it gets easier every year.   5 Strategies for making the most of the holidays with chronic illness: Stop sending holiday cards. Seriously, they cost a bunch of money, and most people barely glance at them. You spend hours shopping for them or designing them; you spend much moolah on printing or purchasing them, plus all that postage. And you wear yourself out putting together the mailings....

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My hero, on a step ladder (sometimes we just need a little validation)

Posted by on Nov 8, 2017 in caregivers, featured, relationships, Uncategorized | 19 comments

Last week, I had a super-aggravating experience related to what my husband, Joe, and I jokingly refer to as one of my “fibro super powers.” But luckily, it ended in the kind of validation I think we all need.   Every sound is so loud! Since I developed fibromyalgia 20 years ago, I have become extra-sensitive to everything—especially sound. I remember those first years post-diagnosis, when I would get frustrated about the sounds my neighbors made. I found myself plugging my ears every time an ambulance or fire truck went by, and started carrying ear plugs to wear whenever I traveled. And it’s not just the sound itself; the bass of loud music or trucks going by is also really tough on my system. And when you live in a huge city, it’s hard to escape. My amazing hearing is a terrible “super power” to have! But no one around me seemed to experience the same sensitivity; in fact, when I would complain about the issue to people I was close to, I was mostly met with blank stares, or flat-out negation. “I don’t hear it, so I think you’re imagining it,” my ex would say. “It can’t be that loud if I can’t hear it, so can you just ignore it?” he would ask. Um, no. He certainly was not the only person to minimize or deny my experience; co-workers, friends, and family all did the same thing. That negation was not intentional, I’m sure; I know that none of the people who did it was actively trying to hurt me. But wow, did it hurt. I learned to keep my mouth shut, even when it was causing me extreme distress. Sometimes, I would curl up in a ball in bed, with piles of covers over me, ear plugs in my ears, and just cry. It wasn’t just the constant negative sensation of the rock music from upstairs, or the nagging hum of the truck idling outside my window. The thing that hurt most was when people would shut down my concern or negate my experience. Experiencing validation from my community Recently, I attended a retreat for women with chronic pain. Spending a weekend with a handful of women who immediately “get” your experience is powerful. During one conversation, I discovered that at least two other people there with fibromyalgia or other chronic pain conditions also live with the intense sound experiences that I have. It was amazing—I mean, I was literally amazed by how good it felt—to be heard, and to experience validation. Just knowing that someone understood my experience, and told me it was okay to be upset by it, made me feel like less of...

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