Be a Babe: Subscribe & get a free Beginner's Toolkit + more. Smooches!

How to talk to people about being in a huge flare-up

Posted by on Apr 18, 2018 in acceptance, ChronicBabe Basics, coping, featured, friends and family, relationships, resilience | 2 comments

It’s not easy to talk to folks about being in a flare-up: being in constant pain, experiencing unyielding fatigue, spending hours on the toilet every day, having daily anxiety attacks. That’s been my life since mid-January, and it’s only just now starting to ease up. So I’ve had a good bit of practice when it comes to talking to people about being in a mysterious months-long flare-up. What’s a flare-up like for me? A fibromyalgia flare-up for me has all of the above symptoms and more. Sometimes my skin itches all over; sometimes I get rashes. A couple months ago, all of my teeth hurt. I sometimes have a ringing in my ears and a feeling of vertigo. Some days, I have ALL of these, all at once. I’m a regular party over here, right?! It’s hard to remain upbeat As you move through life in flare-up mode, it can be hard to keep your mood positive, even for part of the day. Those of us who’ve been sick a long time may know how to muscle through some of it, and not really show how bad we’re feeling, because we have kids, or work, or commitments that can’t be ignored. So we’re often quietly suffering and not speaking about it. (Those who know us very well might still recognize the struggle in our faces.) Talking endlessly about how bad we feel is NOT a good way to boost our mood. While it can feel good sometimes to vent to a friend or your therapist, doing it many times, day after day, is not something I recommend. You’ll get tired of hearing yourself complain, and by repeating the mantra of suffering over and over, you’re drilling in the message that you’re nothing but the suffering. After some time, it can begin to feel like you’ll never come out of it—and once you hit that stage, it is indeed hard to climb out of the hole emotionally. So I recommend that you choose a couple people close to you to confide in, and then pledge to yourself that you will try not to focus on repeating your list of ailments day in and day out. Fill in that space with reminders to yourself of the things that ARE going right. With the people you feel comfortable talking to about all the details, go ahead and vent—but also do two things for yourself and for them. First, put some kind of time constraint on the venting. You get to do it once a day, for example, or a single venting conversation can’t be longer than 15 minutes long. It’s healthy to get things off your chest, but not healthy to wallow…get...

Read More

What’s the secret to being as well as possible (AWAP) in spite of chronic pain and illness? Start with: Acceptance

Posted by on Feb 21, 2018 in acceptance, ChronicBabe Basics, coping, featured, practicalities, resilience | 18 comments

Sometimes, we need to come back to a foundational practice, one which I’ve learned is just that—a daily practice. I’m talking about acceptance, one of the most powerful tools we ChronicBabes have for staying AWAP.   When someone asks for my secret to thriving, I usually respond with “acceptance” I was talking to a loved one earlier today, and he thoughtfully asked if I was out of my flare-up yet. The way he put it, actually, was “are you feeling as well as possible?” “Yes,” I replied. “So you’re not having as much pain as a few days ago, I take it?” “Well, actually I have more. But I’m still AWAP,” I said. A brief moment of quiet passed between us. “But you were traveling last week—didn’t the pain keep you from going?” he asked. “No, I mean…the way I figure it, I’m either going to hurt at home alone, or hurt in a fun vacation house with 10 friends, so I still went on the trip.” Another moment of quiet. “If you figure out the secret to being AWAP even when you’re hurting so much, be sure to share it,” he asked. “It’s acceptance, all the way.” But what is acceptance? Acceptance is all about getting real with all the things that ail you, and looking them right in the eye and saying “I see you, ailments. I know you are not going away, or if you are, I have no control over when that will happen… but I’m not going to let you stop me.” It’s about saying the serenity prayer on the regular: “God (or Goddess, or Universe, or…), grant me the serenity to accept the things I cannot change, courage to changes the things I can, and wisdom to know the difference.” Acceptance is not letting yourself Google the same symptoms over and over and over post-diagnosis, hoping to find a new “fix” and driving yourself crazy. The practice includes asking for help when you need it, even if it’s more help than usual, and not apologizing for needing help. Acceptance is allowing yourself time to grieve because this shit is super hard. Practicing acceptance means doing all your regular check-ups even when your calendar is crowded with other health care appointments, because you know neglecting things like your teeth or your boobies could mean developing EVEN MORE health issues and who needs that? Acceptance is not trying to recreate the wheel every day. Instead, it’s creating routines that take into account all your needs, so you can do all that’s possible to make the most of your day each day even if you’re hurting or flaring up. It’s knowing that even if you feel...

Read More

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 | 9 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....

Read More

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...

Read More

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....

Read More

5 Ways to Avoid Overwhelm When You Have Chronic Illness #AWAPwednesday

Posted by on Feb 15, 2017 in acceptance, ChronicBabe Basics, coping, featured, practicalities, Work | 12 comments

Okay, I’ve got to remember to go to the dry cleaners, and call my health insurance about the EOB, and make sure I take my new vitamins this afternoon, and paint my nails for a photo shoot, and, and write a handful of emails, and… whew! I am overwhelmed! So it really resonated when one of our fellow #ChronicBabes emailed me to ask about overwhelm. (Did you know you can request a video on specific topics or questions around chronic illness life?) It’s easy to get overwhelmed when we have chronic illness, because there are so many things to juggle—and the world is just overwhelming all on its own! I hope you find some of my tips helpful.     *AWAP = As Well As Possible Now it’s your turn: What kinds of things help you get calm and tackle overwhelm? I want to know! Tell me all about it in the comments below. Want more #AWAPwednesday? Check out our #AWAPwednesday video playlist, which has more than 130 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! (Rough) Transcript: 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? One of our fellow #ChronicBabes wrote me recently with a question about overwhelm. She’s been feeling more and more of it since she got sick, and she wondered if I sometimes got overwhelmed, too—and what I do about it. Girl, you KNOW I get overwhelmed sometimes! Not only do I have a handful of chronic illnesses to manage, but I also run my own business teaching women how to live full lives in spite of being sick chicks, and I’m finishing writing my first book, and I have a couple of time-consuming hobbies, and friendships and a husband to maintain, and… I am SO with you on the overwhelm thing. I have a few tricks up my sleeve when it comes to handling overwhelm. Here we go: Make a list. I know, it sounds obvious, but seriously: Make a list. Sometimes I use the reminders app that’s built into Apple computer products, so my lists are synced across all my devices. Sometimes I use the Evernote app if I want to make a list of things I share with my husband or a friend, so we...

Read More

WE’RE NOT DOCS!

Info posted here should not be considered medical advice; it's not intended to replace consultation with physicians or other health care providers. 

Every Babe needs to find her own path for achieving optimal wellness. While we do tons to help guide you, it’s up to each of you to make well-informed choices and live with the consequences. ChronicBabe.com assumes no liability or responsibility for stuff that goes wrong.

Links to other web sites are provided as a service, but do not constitute endorsement of those sites by ChronicBabe.com; we are not responsible for their content. We do our best to find the most rockin’ resources but hey, we’re human.

Take what you like from this space, and leave the rest. Use what you learn to make your life better. Be responsible for your own choices. And please don’t sue us. XO!

As Seen In