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That time I went to the E.R. because I thought I was having a heart attack…and almost didn’t, because I was afraid I WASN’T having a heart attack

Posted by on May 2, 2018 in ChronicBabe Basics, fears, featured, pain, practicalities, resilience, self care | 6 comments

SPOILER ALERT: I was NOT having a heart attack. Last night, I was taking a shower when I had a sudden searing, clenching pain in my chest that took my breath away. It lasted for a couple minutes, and then got a bit better, but my left arm and shoulder and neck were clenched and sore. My chest felt tight. Was I having a heart attack? Nope. Turns out, it was a huge muscle spasm. I had never had one like that before. But WOW did it present like a heart attack. I Googled “women’s heart attack symptoms” and had almost everything on the list (minus nausea or vomiting). But did I go to the E.R. immediately? Nope. I felt scared, but not just that I was really sick—I felt scared that the staff would judge me harshly if it turned out I wasn’t having a heart attack. How messed up is that?! Have you ever left the E.R. with undiagnosed symptoms? Oh, babe—I know you have. I have, too, many times. I think it’s part of having undiagnosed chronic illness; as we try to figure out why we feel so broken, the E.R. is often the easiest place to get care for things that feel, well, emergent. I’ve done it so many times over the past 20 years, in fact, that I’ve developed a bit of shame about it. That shame has sometimes kept me from going, because I know the odds are that they won’t find anything. Tests will come back negative, blood work won’t show anything, and they’ll throw up their hands and say “we don’t see anything wrong, so maybe you’re under stress?” And then I’ll head home, dejected, still unwell, and alone. This pattern repeats over and over for many of us, and can begin to make us feel like it’s never worth going to the E.R. or the doctor’s office. But DO NOT stop getting checked out. What if I had been having a heart attack? Seriously, how terrible would it have been if I was having a heart attack, and didn’t get checked out because I was worried about being ashamed of not being sick? Super terrible. And I’m not a doctor…how should I know if I was sick enough to go to the E.R.? Google is NOT our doctor either, babe. But dang, even Google was telling me to go to the hospital last night. My husband, Joe, got home just as I was deciding to call 911. The operator said a person should never ever neglect chest pains, and that they were sending an ambulance. Joe spoke up and said he would drive me. A few minutes later, we were...

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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...

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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 | 20 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...

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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 | 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....

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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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