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When old symptoms come back again: PTSD, rain, and acceptance

Posted by on May 1, 2019 in coping, featured, PTSD | 30 comments

It’s been raining a lot here in Skokie, the village I now call home since we moved a few minutes north of Chicago’s north side to gain more space and a backyard for gardening. And by raining, I mean, a lot. First there was a freak blizzard, which dumped a ton of precip on us and then all melted the next day, soaking the ground. Then, it’s rained almost every day since, and apparently overnight last night, monsooned. That’s why my backyard looks like this today: Those wooden boxes on the right with the stone base are going to be my garden, and you can see the water has risen well into that area. (But the wood is made for this, so it should hold up, at least for a few years.) And that patch in the center is where we’re amending the grass, so I guess it’s good that the rain is fueling those little seeds. But that water. All the water. It’s effing horrifying. See, I have lingering PTSD symptoms from a traumatic storm experience more than a decade ago. At that time, I lived in a condo with my first husband. On a normal day in August, I was working in my home office when my friend Dee called to say she had just heard a tornado warning for my neighborhood. “What? That’s cra-” was all I got out before the lights all went out, the phone died, my ears popped, my stomach flipped, and then the sound of a freight train pummeled me. I ducked and ran for a closet, only to find it was too shallow for me. I found another closet and secured myself, holding the doorknob as tightly as I could. Minutes passed. Things quieted. I peeked out. It didn’t look so bad, some minor damage in our bedroom but nothing big. I ventured into the back of the condo, and — I can only describe it as a waterfall. Water poured out of every corner joint in every room. The kitchen addition built by a rehabber, was pouring rain into our kitchen and dining room. Debris was everywhere. My brain went upside down. I decided I could just mop up the water with linens, and gathered everything in the house to line the walls and floors. I called my then-husband but all the lines were busy. I panicked. I sobbed. I gripped my fists. I kept hunting for linens. Then I looked outside and saw the devastation. Our patio furniture: Twisted like a pretzel. A car in the parking lot had a telephone pole through its windshield. Commercial air conditioner units had been tossed around like a kid throws Legos. (They...

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25 Ways to Support Chronically Ill Friends During the Holidays

Posted by on Dec 19, 2018 in caregivers, ChronicBabe Basics, coping, featured, friends and family, holidays, relationships, resilience | 6 comments

It’s the winter holidays, and this time of year, many of us with chronic illness feel extra blue. We may not be able to travel because of our illnesses, or we may have less money to spend on gifts because our health expenses are high. We might feel like we can’t attend parties because there won’t be anything for us to eat or drink; we might even feel like we won’t have anything new to talk about, and that’s uncomfortable. This holiday season, I hope you’ll give an extra thought to your friend who’s ill. To make it easier, I’ve come up with a long list of ways you can show you care. This is great for those of us sick chicks to share with each other (we’ve got to support one another!) and it’s a great list to share with our loved ones, who might want to support us but don’t know how. Your chronically ill friend needs you! And loved ones need to learn how to support sick folks, too. Share this list with folks you love, okay babe? And have the happiest holiday season possible. Text your sick friend to say hello, or I love you, or how’s your day going – something simple.Offer to do a quick grocery store run for your friend, even it’s just to pick up a few essentials.If you can’t run an errand for your friend in person, use a service like Postmates to deliver food,  groceries, or sundries. Set a date with your chronically ill friend to watch a movie together. If you can’t do it in person, schedule a date when both of you can stream the movie at the same time, and hop on the phone to watch and giggle together.Make a recurring calendar reminder every three days to check in with your friend. The holiday season can get hectic and you might forget, but your friend needs you.Offer to drive your friend to some errands they need to run, especially shopping, going to the post office, or even doctor visits. That way you can catch up and make something otherwise mundane more fun.Buy your friend a month of membership in the ChronicBabe Academy, so they can make more friends with chronic illness–and learn how to empower themselves.Call your friend on the holiday and tell them you love them – people so rarely make phone calls now, they’ve become a real treat!Collect your sick friends’ addresses using a program like Postable and then send them a postcard to arrive during the holidays.Bake something you know your friend will love, keeping in mind their dietary preferences or limitations – ask first!If you don’t bake, ask around for a recommendation for...

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do you feel like you’re starting over?

Posted by on Jun 14, 2018 in ChronicBabe Basics, coping, featured, Kick-Ass Sick Chick, resilience | 1 comment

The other day, I sent an #AWAPwednesday email (sign up here if you’re not getting them) about “starting over” when we have chronic illness, and I think the piece belongs here, too. Here it is, copied and pasted, for your enjoyment: i’m back in the gym today for the first time in many months, and it’s ROUGH. like, tears started to flow while i was stretching. i didn’t cry from pain after my 10 minutes on the treadmill. i didn’t cry from stiffness while i did 15 minutes of yoga. i started to cry from frustration, as i realized it felt so much like i was starting over. i remember vividly what it felt like 6 months ago to hit the gym 4 or 5 times a week, doing 30 minutes of cardio and another 25 of yoga. it felt AWESOME. i felt like an athlete again, something that was a big part of my identity until i got sick 20 years ago. today, i didn’t feel that way at all. i felt schlumpy; my gym clothes are extra-snug because i put on 15 lbs in recent months. i felt kinda pathetic; my workout was so short. i felt frustrated; why did i have to endure such a long flare-up, when i had been doing so well for a long time? it felt like i was starting over.   the truth is: i’m NOT starting over. as much as it feels like i’m brand-new at being in the gym, that’s not true. and i think talking this through will help YOU get some ideas for how you can reframe the newbie feeling when you’re coming back from a flare-up or a big life change. here are some realities: i’ve been here many times before; i know the machines, how to use them, where they are, which ones aren’t good for me. this is not new. while i was all quivery today, there were times in my life when i was strong, and i can get that way again. my experience has shown me i can come back over and over, as long as my head is in the game. – speaking of my head, it’s okay to have emotions about coming back. no one cared that i was teary-eyed on the floor mat – no one was staring at me, judging me. it was all in my head. so i can tell that self-critical voice to shut up. i’ve learned a lot from flare-ups. i’ve been reminded over and over that no matter how fit i am, nothing is completely in my control; keeping that in mind will help me as i come back. it’s not going to be...

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

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