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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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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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How to be a great significant other to a person with illness #AWAPwednesday

Posted by on Nov 30, 2016 in caregivers, ChronicBabe Basics, featured, relationships | 14 comments

Hey, sick chick! So glad you found this video. Now, press pause and go get your significant other, or your SO. I’ll wait. OK, great! Hi there. I’m so excited to talk to BOTH of you. This week’s video is the last of 2016, and it’s for all those folks who love us ChronicBabes: husbands, wives, spouses, partners, girlfriends, boyfriends, lovers… this video is packed with advice for how to be a great significant other (SO) to a woman with chronic illness. I hope you find the advice helpful, and I encourage you share this video with anyone who might benefit: *AWAP = As Well As Possible Now it’s your turn: How do YOU support your ChronicBabe? How does your SO support you, babelicious? I want to hear from both of you! 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! (Loose) 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? Checking in Everyone gets a little embarrassed about feeling sick and can feel afraid to burden friends and family with problems. That’s where you come in. Once a day, you should check in with your SO and ask how she’s doing and if there’s anything you can do to help. Sometimes she’s really, really hoping for some help but won’t ask for it because she doesn’t want to create extra work for you. Checking in is a good way to let her know you are always willing to make the time to help her and show that you’re there for her. Listening Sometimes we just need a shoulder to cry on. Seriously. It’s understandable that you’ll want to problem-solve, because you hate to see your SO in pain or sad. But try not to assume that’s always the best move. When your SO brings up a tough subject or challenge, consider asking this question: “How can I help you right now?” She might say “I just need you to listen so I can get this off my chest.” There will be time for problem-solving later. Be a battle buddy I recently spoke to a U.S. Army war veteran,...

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Support From Friends and Family

Posted by on Jul 29, 2016 in acceptance, caregivers, community collab, coping, featured, friends and family, guest author, relationships | 2 comments

This week we asked: “What is your favorite thing a friend or family member has done for you when you’re flaring?” Here are some of our favorite answers. Read and re-read when you’re feeling down.   Keidra says she’s had numerous friends walk her home when her vision is bad and install lights in her hallway and on her stairs to help her see. When Fran was in the second acute phase of her Ramsay Hunt Syndrome and couldn’t move or see, her friend brought her a huge shopping bag full of books on tape so she would have something to do. Michelle’s 70-year-old supermom came and helped for the 3 months of recovery Michelle spent after a nasty car accident. Lindsay’s roommate and boyfriend threw her a mini party with cookies and party blowers when she had to go through an injection medication process that she hated. Tania’s friend cleans and de-cluttered her room for her as a surprise when she was at the doctor. Patricia’s mother moved to live with her daughter and help at home! When Mary Beth was embarrassed of her chipping toe nails at the hospital, her husband gave her a pedicure. Alix’s friend from across the US sent her flowers when she was in her first overnight hospital stay.   We are surrounded by such love! Being a ChronicBabe can be tough, but having loving family and friends makes all the...

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AWAP Wednesday: How to Talk About Sex and Chronic Illness

Posted by on May 20, 2015 in caregivers, ChronicBabe Basics, fears, featured, pain, practicalities, relationships, sexuality | 6 comments

Today’s AWAP Wednesday video comes from a question I received from a fellow ChronicBabe: How do I talk with my partner and ask him to initiate the lovin’ and everything in between, when his attitude is “don’t touch the fragile flower lest it hurt her”? I’m so tired of it feeling so one-sided, it makes me feel like he’s not into me. Watch today’s video, in which I get… well… pretty specific with my recommendations: *AWAP = As Well As Possible Now it’s your turn: How have you handle the sex conversation(s) in your relationships as a ChronicBabe? What’s worked? What hasn’t? I want to know! Join the conversation in the comments below, and share your experience. Want to watch more videos like this? Check out our AWAP Wednesday video playlist, which has more than six hours of guidance, advice, and 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: Great question! I’ve experienced this before, and I likely will again, as I suspect many of you have. When we have a partner who sees us in pain, suffering, it can be hard for them to relax and initiate—and participate in, with gusto—sexual activity. It’s common for our partners to be concerned that they may hurt us. This requires, in my experience, a gentle conversation beforehand. In this conversation, I usually express how I’m feeling that day. And I get specific, saying things like “I would love to make love to you, but I am having a lot of gastrointestinal pain, so no penetration, OK honey?” Or: “I really want to be close to you right now, and I feel pretty good, but I think it might be best to not be focused on achieving orgasm today because I took some meds that might impede it.” Or: “My skin is feeling extra sensitive today, so while I want to be intimate with you, I need you to shave your face first so your stubble doesn’t hurt my skin. Could you do that for me please?” When you couch these conversations in the framework of “I want to connect with you… I want to be intimate with you… I love you…” it makes it easier for your partner to hear you and understand, and to comply. Timing is also an issue. It might feel like it’s breaking the mood if you’re making out and then you start to take your clothes off… and then pause to explain your needs. But you’ve got to do it! The alternative is NOT explaining your needs, getting even more hot and heavy, and then having to stop mid-session because your partner accidentally did something to hurt you. That would suck....

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AWAP Wednesday: How to Handle Micromanagers

Posted by on Feb 11, 2015 in caregivers, featured, friends and family, relationships, self care | 3 comments

Today’s AWAP* Wednesday question comes from a fellow ChronicBabe in need. She writes: “What is the best way to handle loved ones who want to micromanage what we as ChronicBabes either do or don’t do? Even when I know it’s done with love and concern for my health, I still get pissed that they don’t act like I’m a grown up. Even with my limits I want to have some say as an adult what happens in my life.” Great question, babe! I don’t think any of us has missed out on the lovely experience of having someone try to micromanage our life. I’ve got a few practical tips you can start using today in this video: *AWAP = As Well As Possible Now it’s your turn: How about you, have you handle micromanagers in your life? Have you turned those relationships into support resources instead of watchdogs? Fill me in—I want to know! Join the conversation in the comments below, and share your experience. Want to watch more videos like this? Check out our AWAP Wednesday video playlist, which has more than six hours of guidance, advice, and 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: “What is the best way to handle loved ones who want to micromanage what we as ChronicBabes either do or don’t do? Even when I know it’s done with love and concern for my health, I still get pissed that they don’t act like I’m a grown up. Even with my limits I want to have some say as an adult what happens in my life.” Great question, babe! I don’t think any of us has missed out on the lovely experience of having someone try to micromanage our life. There are a few things missing from your question that would help me answer it in the best way, so for the sake of our wider audience, I’ll try to fill in the blanks. I’m going to assume two things: 1. that you’re an adult, not a young adult or teenager living at home. And 2. that you do live on your own, but that you have family and/or friends who live nearby who want to micromanage. OK? OK. It all comes from love The first thing I try to do when someone tries to tell me what to do is to remind myself that they mean well, that their efforts come from love. If they’re all up in your business, that’s because they love you and want the best for you. Remembering that it all comes from love helps me keep from strangling them. It’s a...

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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.

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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!

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