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Migraine Again: Paula K. Dumas chats with leading experts to help you thrive in your life, love & work despite migraine.
40 minutes | 3 years ago
010: Caring for Someone with Migraine, with Peter Rosenberger
010: Caring for Someone with Migraine, with Peter Rosenberger SUMMARY If you love or live with someone with migraine, you may be a caregiver. And if you live long enough you may need a caregiver. Caregiving can be challenging, exhausting, and lonely. Peter Rosenberger understands the sacrificial gift of caregiving and provides life-giving insights and ideas to care for yourself while you care for another. 3 KEY POINTS Migraine is a team sport, no one can fight it alone. Caregivers suffer from three I’s. We lose our identity, our independence, and we become isolated. It is vital that caregivers take care of your own heart, your own body, and your own needs. Otherwise you’re not serving your loved one very well. Because if you go down, what’s the backup plan? Who’s in line to take care of them? Show Notes Paula Dumas: If you have migraine, you appreciate the people who help shoulder the load when you’re having an attack. If you’re a caregiver you might need a dose of encouragement to keep giving and loving through each attack. “If you don’t take time for stillness you’re going to have to make time for illness,” says Peter Rosenberger. And Peter understands what it means to care for someone with a chronic health condition. For three decades Peter has been the primary caregiver for his wife, Gracie. Peter Rosenberger hosts a weekly radio show for caregivers and leads Standing For Hope, the world’s first full-time evangelical prosthetic limb outreach. An accomplished pianist and black belt in the martial arts, Peter is also the author of Hope for the Caregiver and Seven Caregiver Landmines and How You Can Avoid Them. Peter, welcome to Migraine Again. Peter Rosenberger: Thank you very much for having me. I am thrilled to be here and talk about this issue that is affecting so many. You show me somebody with a migraine and I’ll show you somebody who has a caregiver. Paula Dumas: And with a billion people with migraine, there are a couple billion who are caregivers. Peter Rosenberger: You know more than most that migraine affects every relationship within the patient’s sphere, significant and insignificant relationships. Paula Dumas: Let’s start with you. Your wife, Gracie, was just 17 years old when she was involved in a horrific car accident. When you met Gracie in college and fell in love, what drew you to her? Did you have any idea that you would become a lifelong caregiver? Peter Rosenberger: I didn’t have any frame of reference of what it was like to be in a relationship with someone that was hurt. By the time I met her she had returned to college, she already had about 20 operations that I could count. She had a pronounced limp, particularly on her right leg, but both of her legs had taken the brunt of this horrible wreck. We’re still finding things that were hurt at the time that went undiagnosed, even 34 years later. I just saw a beautiful girl. Her beauty captured me. Her spirit is bigger than life. And then I heard her sing and I thought, “Okay, this is it. I’m taking care of this girl for the rest of her life.” But I had no concept of what that would mean. These were not injuries that, okay they mended, you get on with your life. This was not a broken leg that becomes a weather vane when the climate changes kind of thing. These are life-altering injuries and they’ve progressed to the point now that she’s up to, that I can count, 78 surgeries. Paula Dumas: Wow. Peter Rosenberger: Both of her legs were amputated in the ’90s, one after each child was born. When the doctor said, “Hey look, if you guys are going to have children you need to have them when you’re young.” So I went to her and said, “Babe, the doctor gave us orders. I got a prescription and everything.” And so we did but the pregnancy was tough on her and it accelerated the damage to her legs. But she bounced back after the first child and did real well, and we had our second one and got rid of the legs, but the damage was already done to her back and everything else. Double amputees also tend to hyper-extend their back and that has led to so many different problems that she deals with today. Paula Dumas: I think of the young couple falling in love and you looking past what were visible disabilities that she was dealing with. A lot of people who have migraine have invisible disabilities that their spouse or future spouse never even anticipate. Peter Rosenberger: There are the seen and the unseen. The unseen disabilities are challenging. Most people equate Gracie’s struggles with her prosthetic limbs and double amputation but it’s really all the unseen disabilities that she carries. She has great prosthesis and they do well for her and she’s even learned how to snow ski as a double amputee. Paula Dumas: Wow. Peter Rosenberger: So the problem is not prosthetics. Prosthetics have come a long way. It’s the unseen. And this is what draws me to your show because when you’re dealing with migraine issues, that’s an unseen thing. People don’t know. They look at you and they don’t know the agony that you’re in, they don’t understand it. And you don’t necessarily, as the person going through it, have the wherewithal to even communicate how difficult it is at the time. Sometimes the verbal component just gets shut down because it’s a blinding pain. Paula Dumas: Caregivers, which is who we’re talking about today, have a lot of the responsibility for the patient when they’re in the toughest part of an attack. Many caregivers juggle meals, childcare, doctor appointments, and medical bills for the person that they care for, at the expense of their own health. Peter Rosenberger: Don’t forget laundry. Paula Dumas: Laundry can be a beast. What’s the condition of today’s caregivers and is there any prevalent concern about this? Peter Rosenberger: There’s 65 million of us caregivers in the United States alone and it’s only going to get worse as we have an aging Baby Boomer population. On the news, a headline shot up that said, “Robots to replace exhausted workers.” And I’m thinking, “Show me a robot that can replace a caregiver.” Paula Dumas: Yeah. Peter Rosenberger: Where’s my robot? We’re tired, we’re worn out, and it’s chronic. There’s no end in sight. It’s not going to necessarily get better. It probably will get worse. How do you sustain the person who’s pushing the wheelchair, standing in the hospital room corner, picking up the prescriptions, doing the laundry, and up late at night mopping the floors? When you’re dealing with migraine issues it’s not limited to headache. Paula Dumas: Oh yes. Peter Rosenberger: If you have a professional carpet cleaner on retainer you’re probably a caregiver. The reality of our lives as caregivers is that we are cook, bottle washer, maid, home repair, and Uber driver. The journey for caregivers is long and wearisome. My mission, my passion, my books, my radio show, my speaking events, everything that I do is designed to strengthen that caregiver, to get them to a place of emotional and sometimes physical safety where they can catch their breath and start making healthier decisions for themselves. Because I’m not good to my wife if I’m not in a good place. Paula Dumas: I was just reflecting as you were talking about all the different roles that the caregiver plays, like my husband holding my hair back as a human hair clip as I was throwing up. Peter Rosenberger: Yeah. Paula Dumas: And then having responsibility for cleaning it up. It’s a thankless job. Peter Rosenberger: I remember when Gracie and I were dating. She had gotten sick and she called me. I was at my dorm room in college and she was at her apartment and she said, “Can you come over and help me. This is a real problem.” So I get over there and it was a real problem. I thought she’d gotten sick. No, no, no. This looked like a horror movie. I thought, “Durn girl, can’t you aim?” It was everywhere and I thought, “Oh, I had to get the Barfamatic 2000 to clean this up.” There’s a chapter in her book, Gracie Standing With Hope, I helped her write called A Match Made in Heaving… (CONTINUED) For the Complete Transcript Click Here RESOURCES Care Givers With Hope Caregivers With Hope: The Radio Show Hope for the Caregiver – Amazon.com Migraine Again Articles Be Your Own Migraine Advocate to Get the Best Results Marriage Tested by Chronic Illness? Why Some Men Leave Handling that Helpless Feeling When Your Child Has Migraine Migraine World Summit Navigating Love, Marriage and Migraine – with Les Parrott PhD ABOUT OUR ADVERTISERS (Interested in becoming an advertiser?)
41 minutes | 3 years ago
017: How to Show Kindness to People in Pain, with Shaunti Feldhahn
017: How to Show Kindness to People in Pain, with Shaunti Feldhahn Leave us a Rating & Review Here When someone has to cancel due to migraine, it’s a huge gift for somebody to say “No problem! And I am so looking forward to doing this. Let’s try something next week. Shaunti Feldhahn Author and Relationship Expert SUMMARY “Be kind, for everyone you know is fighting a great battle” is especially true for people with invisible illnesses like migraine. People in pain often have a tough time telling others how they can help them, and showing kindness when they feel awful. Yet Shaunti Feldhahn, a top relationship expert and researcher, says that showing and receiving kindness can make us healthier and happier. 3 KEY POINTS People in pain often need help, but need to be open to receiving kindness from others instead of building a wall around themselves. Tell others how they can help you. Migraine is a multisensory experience that affects sight, sound, touch, smell, affecting how we experience the world during attacks and in between. Shaunti’s research shows that we’re not quite as kind as we think we are. She offers a free “Kindness Challenge” to improve our relationships and our health. Show Notes Shaunti Feldhahn: Some of my friends who have suffered from migraines there tends to be, at least in some of them, almost this it’s my burden to bear streak of independence. If we start down this road I’m always going to be the burden, and I don’t think that’s true. I think that there are truly close friends and spouses who want to be there and need the person to actually be willing to share what they need. Paula Dumas: Do you ever wish that someone would help you through your next migraine attack without you having to ask, or find yourself snapping at the people you love? You’re not alone, according to today’s guest, we’re not as kind as we think we are. And she should know, she’s researched how we actually treat each other and the impact it can have on our mental and physical health. Discover the surprising healing power of giving and getting more kindness in your life when we meet her right after this. Paula Dumas: Known as the relationship whisperer Shaunti Feldhahn helps people thrive in life and relationships through her social research, which she shares as a popular speaker and best selling author. Her books have sold two million copies in 24 languages. And she frequently talks about her groundbreaking discoveries on national television and radio programs. Her newest book, The Kindness Challenge, demonstrates that kindness is the answer to pretty much every life problem, including our health. It’s sparking a much needed movement of kindness around the world. Shaunti, welcome to Migraine Again. Shaunti Feldhahn: It’s great to be with you. Paula Dumas: It is great to have you here, and full disclosure, Shaunti and I have known each other for years. Shaunti Feldhahn: A lot of years. Paula Dumas: Yeah, a lot of years. One of the most popular articles on Migraine Again, on our website, is called “21 Thoughtful Things to Do for People with Migraine.” And it’s not about random acts of kindness by strangers, but very intentional acts of kindness by people who know someone with migraine and maybe need a little inspiration to be truly thoughtful. Based on your research, why would you guess that there’s so much interest in it? Shaunti Feldhahn: I think honestly, it’s because everybody knows this culture has just gotten so unkind, and it’s hard. It’s a hard culture to live in, I think we’ve all bemoaned that, right? And it’s sort of this, there’s something I can do, it’s just this great feeling to have this sense that I can do this. And it’s not a random act of kindness out there for the world, which is great, this is for somebody I specifically know and care about. Paula Dumas: Mm-hmm (affirmative), yeah so we’re drawn to kindness. And sometimes we need a little help, I think, finding our way on practical ways to be kind. If you haven’t walked in someone’s shoes, it’s hard to know what they really, really want, what they would really, really value. And if you’re going to make the gesture, you want it to land and be valued, right? Shaunti Feldhahn: Yes, very much so. And having known very, very close friends who deal with migraine themselves, I’ve only had one, I feel like God gave me one migraine in my life so that I could sympathize and empathize with my friends. And knowing, I have one friend who would literally, she would have to go to the hospital and be begging them to knock her out because she just couldn’t handle it. And I always feel so helpless, what can I do? I love this girl, what can I do to help her? And so there is a great power that comes from feeling like I can help somebody else. But you know what, if you’re suffering with migraine, there’s also I think a great power in having some opportunity to go okay I don’t like this, but I can really get my mind off of it by really focusing on helping other people. Paula Dumas: That is incredibly true. I have found that on those days when I have, what we call on the pain scale around a three or a four, I don’t feel like I can produce anything of value, but I feel like I can do something kind for someone else. Like make something for them, and that physically makes me feel better. It is a good way to cope. And it thrills me to pieces that people love this article, because it seems like in this era of kind of tweet shaming and hate crimes, we all need more kindness in our lives. Shaunti Feldhahn: Well we all need more kindness. But here’s really what I’ve found in the research, because this is, as you know, all of my stuff is based on these big research projects, right? And in this case, what I realized somewhere along the way is that all of us think we already are kind, and we don’t realize we’re actually a little deluded. And we really, truly don’t know what it looks like, or how to develop this so that it becomes habit. And that is really what I felt like I could bring to the table, is what can you do to develop a habit of kindness in your own life so that first of all it’s healing for you? But also, it’s truly healing for the culture? It’s just we already think we’re doing that kind of stuff, and we just don’t realize we’re not, we need to completely retrain our brains. Paula Dumas: Mm-hmm (affirmative), that is true. Your book starts with a quote, “Be kind for everyone you know is fighting a great battle,” which is a wonderful quote. And people with migraine fight an invisible battle every single month, if not every single day, for many. Why do you think kindness is important to kind of shift the culture? Shaunti Feldhahn: Well here’s really what I’ve found in all of these research studies that I’ve done over the years. This came about, this study came about because one thing happened. I looked back at all the other studies that I have done over the years, and this is the eighth big nationally represented study I’ve done. And I realized my job, I sort of feel like my calling, my job, is to help people learn the little things, investigate the little things, dig out the little things that are really going to make a huge difference in helping them thrive in their life and thrive in their relationships. And I realized there is one common thread running through every single one of these studies, because they were all specific to … For example, one of them was to help women understand men, or helping parents understand their kids for example. But as I looked through them all, I realized the common denominator of whether you thrive in your life and your relationships. It turns out it is far more correlated to how you treat others than how you yourself are being treated. And especially when you’re not feeling well, especially when you’re in pain. When you’re dealing with something that’s a chronic condition, like migraine for example, it’s so easy to try to focus on “I need my space,” and “I need this to happen.” And all of that is completely understandable. “You’re not being fair to me, and you don’t know what I have to deal with.” And all of those things are completely understandable thoughts, but it turns out that actually what’s going to help you thrive is if you flip it and you figure out how can I be kind? It is astounding what that does in our mental and emotional health, and some studies have actually talked about it changing our medical health. Paula Dumas: Yeah, I believe it, I believe it. Let’s unpack some of your most surprising findings. Shaunti Feldhahn: Yeah, absolutely. Paula Dumas: First you discovered that we’re not quite as kind as we think we are. Is that kind of like we’re not quite as good as we think we are? Shaunti Feldhahn: Yeah. What we ended up discovering is that there’s three things that if you do them every day it retrains how you think, and that’s when you start realizing that we’re not as kind as we thought we were before. And what we call it is the 30 Day Kindness Challenge, and there’s three elements to it, and let me explain what those are. First you pick somebody that you want a better relationship with. And especially for somebody who’s dealing with something chronic like migraine, it really is important to pick somebody that you se
40 minutes | 3 years ago
Powerful Ways to Fight Sexism and Stigma in Women’s Health
021: Powerful Ways to Fight Sexism and Stigma in Women’s Health Leave us a Rating & Review Here ***** “Considering that pain is obviously a symptom of most diseases and it’s the main symptom that sort of brings patients into the medical system, it’s pretty incredible that doctors are receiving just a few hours [of training] on pain management.” Maya Dusenbery Author, Doing Harm SUMMARY Too often, women leave the doctor’s office wondering if their doctor believed them and if they’re getting the care we deserve. If you’re a woman, you may be battling a systemic, hidden stigma that affects the quality of care you receive. Author Maya Dusenbery wrote a hard-hitting expose that reveals how modern medicine is systematically failing women today. Stigma in women’s health is a pressing issue of concern to women and the men who love them. 3 KEY POINTS Gender bias in healthcare is systemic and unconscious and shapes what we know and the quality of the care that patients receive. Research confirms measurable differences in the time spent waiting in the ER and the time it takes to get correctly diagnosed between men and women. Women who have conditions such as migraine, autoimmune disorders and fibromyalgia, often experience really long diagnostic delays and frustration with health care providers who weren’t taking their symptoms seriously. Show Notes Maya Dusenbery: I guess it wasn’t until really the early 90’s that women stopped being excluded from early drug studies by the FDA and now we’re usually a part of most studies. It still isn’t sort of routine to do that sort of analysis. There are certainly plenty of drugs that are on the market today that were just approved in those days where it was really just men who they were being tested on. Paula Dumas: How many times have you been to the doctor’s office and walked away from your appointment thinking did my doctor believe me, did he hear me, am I actually getting the care that I deserve? You know, if you’re a woman, today’s guest says the answer is probably no. You’re actually at greater risk than you realize. She’s written a hard hitting expose that reveals how modern medicine is systematically failing women today. And, guys, don’t tune out. You’ll discover a thing or two about getting better care as well or help fight for the women in your life. We’ll be back to meet her right after this. Maya Dusenbery is a compelling voice in the women’s health movement. As the editor of the award winning site, feministing.com, Maya brings together scientific and sociological research, interviews with experts, and personal stories from women across the country to provide the first comprehensive look at how sexism in medicine harms women today. In her new book, Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, is an eye opening read for women and men who love them. Maya, welcome to Migraine Again. Maya Dusenbery: Thank you so much for having me. Paula Dumas: We’re glad you’re here. So this is a really timely book, you know, as women are fighting for inclusion and representation in Hollywood, in politics and business. You know, I’ve never thought of myself as a feminist, but I am 100% for women getting the health care that they deserve. Maya Dusenbery: Yes. Paula Dumas: We can agree on that. Reading this book, for me, was really a wake up call to see the sexism at work in the health care system and then try to do something about it. Because migraine really affects three times as many women as men, it’s a huge women’s health issue that’s often minimized by the health care system. So, you’re a journalist by trade, how did you first get involved in women’s health advocacy? Maya Dusenbery: I’ve been a feminist writer for many years. As you said, I run a feminist blog, feministing. Before I became full-time focused on journalism, I actually worked in reproductive health advocacy. I’ve really been, in some ways, interested in women’s health issues for a long time and had always written a lot about reproductive health. It wasn’t until about five years ago when I developed rheumatoid arthritis that I kind of started thinking about these issues more broadly. Because of that personal experience, got really interested in learning about autoimmune diseases, which are very, very common, affecting up to 50 million people in the United States. Like migraine, disproportionally affect women; about 75% of people with autoimmune diseases are women. Maya Dusenbery: I sort of just started wondering why there was so little public awareness about this epidemic and also started hearing these stories from other women with autoimmune diseases and also other conditions who had experienced really long diagnostic delays, and during that search for a diagnosis really felt like health care providers weren’t taking their symptoms seriously and brushing them off as stress or anxiety and depression or just implying that they were making it up entirely. That’s kind of what got me going down this path of thinking more about how really systemic and unconscious gender bias has very much shaped what we know and don’t know about medical problems and also really shapes the kind of quality of the care that patients receive. Paula Dumas: Fantastic. Well, we’re going to get into some of those specific issues to help people understand what you’re talking about. With this book, Doing Harm, who did you really want to help or what policies were you hoping to change? Maya Dusenbery: As you said in the intro, I really do hope that everybody who either is a woman or cares about a woman, which is really everyone, will read it. I think first and foremost I hope that it helps just ordinary women who’ve had these sorts of experiences where they’ve really felt frustrated or dismissed or really just, you know, feel as though the medical system is not equipped to meet their needs. I hope that they’ll really, thanks to this book, be able to see that those experiences are not just sort of individual bad luck or just a result of their own failings to advocate for themselves, but really that they do reflect these larger systemic problems. In terms of the concrete policies, there are just so many. There’s a lot of people within the medical profession who have been starting to focus on these problems and come up with solutions, but I do hope that the book by sort of being a wake-up call for the public will help throw some grassroots energy and activism towards demanding those changes so that they happen more quickly. Paula Dumas: I hope so too. You know, we produce a lot of content to try to help people, patients specifically, advocate for themselves. Before you can be an effective advocate for yourself, you have to kind of realize what you’re up against. What I loved about your book is that it really gets into some of the systemic challenges that few of us realize. Unless you’re an industry insider, you wouldn’t know those things. Maya Dusenbery: Right, exactly. Paula Dumas: Let’s talk about a couple of those. You raise several issues that affect the quality of health care that women get. The first is med school training. There’s little to no pain management training that doctors get in med school. At least historically fewer doctors were women. I believe that’s changing quite a bit. Tell us what’s going on there and how does that affect the quality of care that we get? Maya Dusenbery: The statistics about how little pain management training doctors receive were really quite shocking to me. Considering that pain is obviously a symptom of most diseases and it’s the main symptom that sort of brings patients into the medical system, it’s pretty incredible that doctors are receiving just a few hours on pain management. There’s a real shortage of pain specialists to deal with chronic pain conditions. I think that is really rooted in the fact that until quite recently medicine has considered pain to only be important as a symptom, as this sort of warning sign that was indicating some und
35 minutes | 3 years ago
020: How to Keep Working Through The Pain, with Paul Gileno
019: “Out of My Head” Premiere Casts Migraine in a New Role Leave us a Rating & Review Here ***** [To advocate for yourself at work] you can say, “If I had better benefits and these benefits suit me, well overall I’ll have a better quality of life, which means I’ll have better work productivity, which means you’ll make more money.” Paul Gileno President, US Pain Foundation SUMMARY Each day, nearly a third of all employees struggle to be productive while working through the pain. It’s a challenge for employer and employee that can take the promise out of a great career and affect the organization’s bottom line. Worse yet, most employees hide their pain, fearing demotion or termination of their job and their benefits. Pain advocate Paul Gileno offers insightful tips to help employees keep a job they need and employers to retain great talent. 3 KEY POINTS Too often, job security is tied to health care coverage. In the US, the Affordable Care Act offered employees coverage independent of their employment, but it’s not a solution everyone can afford. When you “power through” the day, working through the pain as you fake feeling well, you often come home with nothing left to offer your loved ones. That’s presenteeism, and it affects productivity and the bottom line. Employers that invest in wellness programs and offer workplace accommodations to retain employees can be a better working environment for those with chronic pain. Show Notes Paula K. Dumas: Ever find yourself waking up with unusually disabling symptoms and debating, you know, can I drag myself into work today? Is it going to get worse or is it going to get better? Can I afford to miss another day of work? Will anybody notice if I fake felling well? You know each day, millions of people in chronic pain have the same debate and decision process to make, and today’s guest knows a thing or two about pain. A disabling injury forced him to give up a career he loved to form an organization that advocates for people in pain. People just like us. And we’ll be back to meet him right after this. Paul Gileno is a strong force in the chronic pain awareness movement. Having pain himself, makes the issue of pain care a personal and public matter for him. After work injury in 2003, left him living with degenerative disc disease, failed back syndrome and complex regional pain syndrome for over three years, Paul founded the US Pain Foundation. Paul and I know each other, we served together on the Coalition for Headache and Migraine Patients (CHAMP), of which he is a member. Paul, welcome to Migraine Again. Paul Gileno: Thank you very much. Thank you for having me. Paula K. Dumas: It’s so good to have you here. Paul. You and I agree on many things, but first and foremost is that pain sucks. It just sucks. It can suck the life out of a party, the fun out of your day and the promise out of your career if you let it, but we try not to let it, right? Paul Gileno: We certainly don’t. It’s funny because I went to buy the website “painsucks.com” and somebody already owned it. Paula K. Dumas: Don’t worry, I hope they’re putting it to good use. Let’s start with your story of how excruciating pain put an end to your first career as a chef and then started your career with US Pain Foundation. Paul Gileno: So back in 2003, I was lifting a box with things and broke my spine, which basically severed my left sciatic nerve, starting my chronic pain journey. I had multiple surgeries on my lower back and the nerve never healed, which basically put me at odds where I had pain all the time. It was really difficult to stand. And as a chef, caterer, you’re on your feet all day. That’s not like, it’s a job where you could try to adjust. It’s, a physical job where your low back is extremely important, and at the time the pain was too much. So, I had to sell my businesses and almost retire as being a chef, caterer. But at the same token, that pain actually drew me to starting a foundation for people with chronic pain who needed some help and guidance and education. So, when one door closed, another one opened because of my pain. Paula K. Dumas: It’s ironic and painful. I mean, your story is really quite excruciating. I can feel the pain in my lower back, which is minor compared to your pain, not that we’re comparing. But I can feel that pain as you tell the story of having to give up a career that you love, but you really made lemonade out of lemons. Paul Gileno: I did … I would like to say it happened quickly, but it didn’t. It took many years and it’s very difficult to live with pain, my journey is a journey and it’s still happening. I would love to say I woke up the next day and I said, “Okay I have chronic pain and now I’m going to start a foundation.” That wasn’t the case. I went through a really difficult time. I think many of us as people with a different chronic pain conditions go through a grieving process, we go through a whole process of almost like a death. And then when you could come out of it, you try to make the best of what you’re given. Paula K. Dumas: Well, today we’re going to talk about working through pain, which is something that you and I do every day, as do many people in our audience. Even though others have no idea. Presenteeism is what they call it. We’re here, but we’re in pain and we’re trying to work as best we can. This is really a big issue in our economy, especially for people with invisible illnesses. At the risk of stating the obvious, what do you think is the motivation for people like us to show up sick and try to work? Paul Gileno: There are many reasons. One reason, it’s very hard to accept that you have a disease that’s going to stop you. And another big reason is financially, it’s really difficult NOT to work in this economy. People want to work, people need to work. And even though despite pain, and despite having a chronic illness, sometimes we just have to continue on and it’s a really hard thing to face. Paula K. Dumas: It is hard thing to face. We created a meme for social media of a person putting on their combat boots each day to keep going out and fighting a new battle, every day. You never know what you’re going to encounter. I think a lot of people with invisible illnesses like migraine deal with that. They show up and try to operate at work, because they really need the job. Paul Gileno: Absolutely, and you don’t want to be jobless because of your pain and you don’t … you put on your fake face when you go to work, when you have chronic pain. You’re presenting something that’s, not really your life, but you feel like you need to do it. Paula K. Dumas: And the conundrum is that your health insurance is tied to your work and in order to get the healthcare that you need, you’ve got to keep the job. So it’s really difficult and I think that’s changing a little bit with the Affordable Care Act, at least in the United States. But people are still struggling with that. Is that an issue that you are dealing with at US Pain? Paul Gileno: Yes. Well, we’ve definitely would be obviously behind the affordable care act and we were … it did help change the culture of, “I don’t have my job, I don’t have health insurance.” Where it gives people options and say, “Well, maybe I can still get health insurance due to my illness and I can’t maybe do the job I have. Maybe I could find something else and we see more and more people or tied to their jobs, not mostly for financial but because of their health benefits. Paula K. Dumas: Yes. How big of an issue is this? If I’m an employer and I’m looking at my team, what percentage of those people are operating in chronic pain? (CONTINUED) … For the Complete Transcript Click Here Enjoying the Podcast? Leave An iTunes Review Here RESOURCES USPainFoundation.org (Website) @USPainFoundation (Twitter) Migraine Again 10 Jobs That Can Work Despite Migraine (Article) Calling in Sick? Good Conversations About Migraine at Work (Article) Migraine World Summit Calling in Sick: An Employers Perspective on Migraine at Work – with Brian Gifford PhD (Video) ABOUT OUR ADVERTISERS (Interested in becoming an advertiser?)
43 minutes | 3 years ago
019: “Out of My Head” Premiere Casts Migraine in a New Role
019: “Out of My Head” Premiere Casts Migraine in a New Role Leave us a Rating & Review Here ***** When her husband came back from combat and started to experience migraine himself, he was ashamed about the way that he had reacted to his wife’s migraine because now he understood how intense it was to live with. Susanna Styron and Jacki Ochs Documentary Filmmakers SUMMARY Unless you or a close family member have migraine, you might be a bit surprised to see the real-life similarities and the stark differences in how people experience it. That’s just one of the revelations to expect when seeing the “Out Of My Head” premiere, a new documentary film about migraine. For the filmmakers, it’s personal. 3 KEY POINTS Few people who have never experienced migraine can fully understand its disabling, mysterious symptoms. This film offers insights for friends, families, co-workers and health care professionals. It’s actually not headache at all. Migraine is a condition of the nervous system with ramifications and manifestations throughout the body. Headache is just one of the many potential symptoms. People who don’t have migraine might be surprised to discover the prevalence of stigma and strange visual, digestive and neurological symptoms that people with migraine often experience. Show Notes Jacki Ochs: And her husband, who was an Iraq war veteran, had never had migraine prior to his service, and he says in the film that he never really had the kind of sympathy that he should have had for his wife. But when he came back from combat and started to experience migraine himself, he was ashamed about the way that he had reacted to his wife’s migraine. Paula K. Dumas: Think you know what a migraine feels like physically and emotionally? You know, unless you have a close family member with migraine, you might be a bit surprised to see the real-life similarities and the stark differences in how people experience migraine. That’s just one of the revelations that you’re going to experience by seeing Out Of My Head, a new documentary film about migraine released this year. And in the process of making the film, the producers discovered that healing isn’t linear at all; it’s a long journey with peaks and valleys. They’re seasoned documentary filmmakers whose lives, like ours, have been marked by this perfectly evil disease known as migraine. And we’re going to be back to meet them right after this. Susanna Styron and Jacki Ochs are the filmmakers behind Out Of My Head, a documentary about living with migraine. Susannah Styron is a writer and director of films like Shadrach, starring Harvey Keitel and Andi MacDowell, and Sydney Lumet’s TV series, 100 Center Street. And she’s also the mother of a daughter with migraine. Jacki Ochs is an award winning producer-director of documentary film on subjects like Vietnam, love, and jazz. And she’s the executive director of the Human Arts Association, and this film is her second collaboration with Susanna Styron. Susanna and Jacki, welcome to Migraine Again. Susanne & Jacki: Thank you. Susanna Styron: It’s great to be here. Paula K. Dumas: You are our first dual guests so we’re going to have fun with this. Just two weeks ago, we were all sitting on the floor stuffing swag bags for the sneak preview of your film at Headache on the Hill in Washington, D.C. Wasn’t that a remarkable night? Susanna Styron: That was incredible. Jacki Ochs: It was fantastic. Paula K. Dumas: Yeah, there were a lot of tears flowing. Jacki Ochs: It was really great to be in front of all those patient advocates. Paula K. Dumas: It was. And there were a lot of tears flowing not just among the patients and the advocates and the doctors, but among their caregivers, many of whom were there with them. So it was special for me, too. You guys are documentary filmmakers and you’ve produced films on a variety of topics. What prompted you to make a film about migraine? Susanna Styron: This is Susanna speaking. I thought I knew was migraine was when I … All through my life, a really horrible headache until when my daughter, Emma, was 14. She came to me one day and told me she couldn’t see. Totally freaked me out. I called the ophthalmologist because it was her eyes, it was her vision, and I took her … It was temporary, her vision came back. It actually happened again a month later and that’s when I took her to the eye doctor. And he looked at her and he said, “Oh no, I think this is just migraine.” And I said, “What are you talking about? She doesn’t have a headache.” And he said, “Trust me” and sent us to a neurologist who diagnosed her with migraine, and that was the beginning of … I mean, I couldn’t have been more surprised. And as Emma continued to be sick and we continued to get treatment, and I continued to talk to people about it, I realized how many people I actually knew who had migraine and didn’t talk about it and had never told me. So it was both … And I talked to Jacki about it and she had some experience of it as well. So it was both something I had complete misconceptions about and also something that I was, for some reason, so closeted and stigmatized and I couldn’t figure out why, so we needed to investigate. Jacki Ochs: And as we discovered more and more about it, we also realized that migraine was actually a kind of fascinating disease to look at for film because it’s actually something that’s really a part of our culture. So like the beloved book, Alice In Wonderland, which we’ve all read is actually showing symptoms of migraine. So when you feel very tall and you fell very short, that’s actually a symptom of migraine. And Lewis Carroll was a migraineur, so that became something very interesting for us in terms of making a film. Paula K. Dumas: It is. In fact, we’ve got an article on the Alice In Wonderland Syndrome on our website. We’ll add that to the show notes if people are a little bit more curious about that. The film premiere was at the Museum of Modern Art in New York City. What a great venue to recognize the importance of the film in our culture. Aside from our fans, who does this film appeal to? Susanna Styron: We figured it’d probably appeal, obviously, to people with migraine, and it would appeal to their caregivers and people whose lives are affected by it. But it turns out it also appeals to people who don’t know anything about migraine or have any experience of it. We got a great response from people who just had no idea what it really is. Jacki Ochs: And we’ve also, surprisingly enough, we’ve shown the film to a few professional audiences and we’ve actually had practitioners, people who … even migraine specialists who don’t experience migraine themselves come up to us and say, “Oh my gosh. I have a completely different way of looking at my patients having seen your film.” Paula K. Dumas: I would love to see every healthcare practitioner see this film so that they can begin to recognize some of the symptoms and the whole life experience that migraine can affect. It would be useful training film for med schools. Susanna Styron: Yeah, I think it’s unusual that our ophthalmologist knew enough about migraine to, and an eye doctor knew about migraine. Because you get emergency room physicians and general practitioners who see people with migraine and they don’t know that’s what they’re seeing, and they’re failing to diagnose them. Paula K. Dumas: You’re absolutely right. That’s an unusual case where you had a very well-trained ophthalmologist who recognized migraine when they saw it. Many doctors can’t recognize it when they see it, so you and your daughter were very fortunate in that regard. So let’s listen to a clip or two, and then discuss come of the misconceptions about migraine that might even surprise people who have it. Now this first clip is of Dr. Robert Shapiro about what a migraine actually is. Film Clip – Dr. Shapiro: The common refrain for people who have migraine is, “No, no, no. It’s not just a headache.” Well, I think we need to take that actually a step further and say it actually is not headache at all. It is a condition or a state of the nervous system with ramifications and manifestations throughout the body, and headache is just one of the many potential symptoms of that particular state. Paula K. Dumas: A lot of people are saying we shouldn’t even use the term ‘headache’ at all because it is such a misconception about migraine. What do you think? Jacki Ochs: I think that that is probably an interesting perspective and an important thing to consider because I think as researchers are continuing to pursue what migraine actually is and how it operates, they’re discovering a lot of connections to the rest of the body and a lot of symptoms that have nothing to do with headache at all, and that is one of the … that’s a basic misconception about the disease, is that it’s just a big headache. Susanna Styron: And Bob Shapiro, who you just heard, is in the middle of studies about the gut-brain connection, and the nervous system in the GI tract, and that’s what that part of the film leads into, is a discussion about that other nervous system and how migraine exists within the GI tract, and that illnesses such as irritable bowel syndrome might be a part of migraine and other digestive diseases. Jacki Ochs: And migrain
43 minutes | 3 years ago
018: Secrets to Get Better Healthcare for Migraine This Year
018: Secrets to Get Better Healthcare for Migraine This Year, with Dennis Deruelle MD Leave us a Rating & Review Here ***** You need to determine what success is for you. Is it being migraine free for a week or a month or being able to go to your child’s soccer game, or is it just teaching a piano lesson are getting out of bed? Dennis Deruelle MD Author, Your Healthcare Playbook SUMMARY The healthcare system can be confusing, inefficient, expensive, and sometimes dangerous. Navigating the system can be as time-consuming as a second job. To get the best possible healthcare for migraine, insights from an industry insider can save you time, money and pain this year. 3 KEY POINTS Patients are not as proactive as they need to be. We cannot expect the system to always work as we expect. It’s important to be assertive with doctors, insurance companies and medical staff. Finding the best doctor can make a big difference in the quality of care you get. Discover 3 key things to look for when searching for your physician. Mistakes happen. For key appointments, hospital and ER visits, it’s important to bring someone with you to advocate if you’re not able to do so. It could save your life. Show Notes Dennis Deruelle: I consider the primary care doctor your head coach. You have to really have the Tom Brady/Belichick relationship. That’s not going to happen overnight. And so to me the most important thing is get recommendations from people in healthcare. Paula K. Dumas: Ever feel like you have two jobs? One that pays you and another one as a professional patient? Finding the right specialist, reconciling medical bills, researching your treatment options, and coordinating your caregivers, can be time-consuming, tricky and expensive. That’s why we’re excited to talk to an industry insider, a doctor and author who coaches how to get the most out of an ever-changing healthcare system. For people with chronic conditions like migraine, it’s essential. It can make a big difference in the quality of care we get, the quality of life that we enjoy, and our out-of-pocket expenses. We’ll get his practical tips to navigate the healthcare system right after this. Paula K. Dumas: An expert in hospital medicine, and an internist, Dr. Dennis Deruelle is also the author of “Your Healthcare Playbook: Winning the Game of Modern Medicine”. It helps patients to understand how insurance, doctors, hospitals, and medical billing actually operate, so that you can get the most value from the often imperfect system. Dr. Deruelle, welcome to Migraine Again. Dennis Deruelle: Oh, it’s great to be here, thank you. Paula K. Dumas: And we’re going to talk today a lot about the US healthcare system, but many of the tips that you’re going to share with us I believe are relevant to people all around the world who are listening to this program. So, you call our US healthcare system “confusing, inefficient, expensive, and sometimes dangerous.” Yikes. Dennis Deruelle: That’s right. As you know from my book, I use football or sports analogies and unfortunately, we’re fragmented teams of teams, and it’s very apropos with the Super Bowl just happening. It’s almost like you have an NHL team an NBA team an NFL team coming together to try to play, and that they don’t know what to use a hockey stick or football and that’s really our healthcare system. It’s fragmented, and the patients are stuck in the middle, unfortunately. Paula K. Dumas: Mm-hmm (affirmative). So we need to know how to play the game. What really led you to write this book? You know, we’re all patients in various states of wellness. Who are you trying to help? Dennis Deruelle: Well, the reason I wrote this book is first of all, for years as a physician, and then becoming an expert on the Affordable Care Act, and Healthcare Reform, and healthcare delivery, and understanding value, I have helped family members over the years help them navigate the system and made phone calls for them when they have been diagnosed with something. And then I realized, maybe I could do this for a lot of people if I could put it into a book. I also did a fellowship in 2010 at UC San Francisco, and during that fellowship I really understood what was coming at us in terms of the changes with the Affordable Care Act, and I realized that patients would be lost in the Byzantine rules of the ACA. And putting all that together, I realized football was a great way to kind of tell the story. And so that’s how the book came about. In terms of people to reach, of course I think the book is for anyone. Even if you’re well and healthy, so-called a young invincible. I mean just look at the flu epidemic this year. You can be very healthy and get the flu and have major issues, so I think that everybody would benefit. However, it’s really written more for people that use the healthcare system of course more often. Because they’re the ones that really faces … sometimes on a daily basis. Paula K. Dumas: And importantly for caregivers as well as patients. So as I was reading the book, I was reading it through two lenses. One is taking care of myself and my own health, but also those in my family, my aging mother, it’s all relevant to them too. Dennis Deruelle: I think that’s great, and thank you for pointing that out. When I talk about the teams of teams, there is a team around the patient, which could be a family member or a caregiver. There’s 50 million caregivers in the United States, so absolutely. I really think this book is for caregivers, or daughters, or parents. That’s extremely important part of this team. Paula K. Dumas: Great. But what mistakes do you see that people often make that could be affecting the quality of the healthcare that they’re getting? Dennis Deruelle: Well I think there’s a couple of things. If I had to pick one thing, I would say patients are not as proactive as they need to be. They are reticent to speak up at times. They’re reticent to ask the question why, or how could I have something else? They really in general are more passive in their healthcare process. So I think that’s probably the biggest mistake. And I would say the second part of that, is many patients assume that they’re in what I call a safety bubble. A quick anecdote is, there was a truck that was hit by a train in a parade in Midland, Texas, and the truck driver was just following from the parade, and he was innocent what was called later by the safety board a safety bubble. So even though he could hear the train and things he just assumed that the parade was going on the right way and he should keep going. And so basically patients should never assume they’re in a safety bubble in a healthcare situation because bad things can happen, and so I think that that those are two key mistakes. Paula K. Dumas: Yeah, to address the first one first, the idea of being too passive and not as proactive, I think is a significant concern for many people and not to be sexist, but I think women feel oftentimes even more intimidated than men do. And you walk into a doctor’s office and you’re a little intimidated by the white coat. You’ve waited and waited and waited to get this appointment, and then you’ve got seven minutes, maybe 10, 12, if you’re lucky to kind of get it all out there and try to get a good action plan. And that whole pressure cooker is not really conducive I would say, to help us be proactive and vocal about what we need out of the system. Dennis Deruelle: Yes, I couldn’t agree more. That’s why I say for some people, it’s better to take an advocate or what I call an agent, you know I use sports analogies, it’s like having your agent. Your agent is all they’re concerned with is your interest, right? They don’t care about the team, the owner, the whatever. And so I think that helps. Another thing is in the book, I tell a story about my sister. I armed her ahead of time with some things to say, and some things to have prepared. And when the doctor, the orthopedist was looking at his watch, she asked him, “You know is there someplace you need to be or you know or are you not concerned about my concerns?” and then it really turned the conversation. So not everyone can be as assertive as my sister, but in one way or another if you’re prepared, and then you take an advocate have a little better chance. But I agree it is intimidating, even for a doctor when you go to a doctor. Paula K. Dumas: I want your sister to go with me to my next doctor’s appointment. Dennis Deruelle: Yes. Yeah, I agree. Paula K. Dumas: Yeah, everybody needs a sister like that. So you talked about the safety bubble as well as being a mistake that people often make, and people with migraine often times find themselves in the emergency room. And you know I had one of my biggest life-threatening experiences not on the freeway, but in the emergency room when I was given too much of a medication that was not good for me, and was like literally flat-lining. If my husband hadn’t been there, I might not be here today talking to you. Dennis Deruelle: That’s exactly the point. That’s exactly it, and I’m so sorry that happened to you and obviously very, very thankful that this was remedied for you. But I wrote the book because I know this, I’ve seen it over the years, I’ve been a physician for more than 20 years, and mistakes happen unfortunately every day. There’s a lot of debate about the statist
41 minutes | 3 years ago
016: That Migraine Feeling, with Poet Michael Dickman
016: That Migraine Feeling, with Poet Michael Dickman Leave us a Rating & Review Here When I have a migraine, I’m very acutely aware of my sensory experience as a person. I’m aware of sounds, smells, sight, in a hyper way compared to my everyday existence. Sometimes writing poems can also get me to that place, but without a headache. Michael Dickman Acclaimed Poet and Author, Green Migraine SUMMARY If someone asked you, what does a migraine attack feel like? What do you see, hear, smell, taste, and feel? It’s not that easy to describe. Words like agonizing, disabling, overwhelming, painful, or even surreal, might come to mind. One of America’s leading poets shares his migraine experience with us in much more colorful words and pictures than most of us can conjure. Immerse yourself in the beauty of his poetry, and see if his migraine feeling is anything like your own. 3 KEY POINTS Describing that migraine feeling to someone who’s never experienced it isn’t easy. Poetic imagery and metaphors can help people without migraine feel what we feel. Migraine is a multisensory experience that affects sight, sound, touch, smell, affecting how we experience the world during attacks and in between. Some of the most significant symptoms occur in the premonitory and aura phases, before the pain and vomiting begin. Michael’s poetry describes that vividly, as well as the loss of time, pain of light and painful sound. Show Notes Michael Dickman: When I have a migraine, I’m very acutely aware of my sensory experience, right, like as a person. I’m aware of sounds, smells, sight, in a hyper way compared to my everyday existence. Sometimes writing poems can also get me to that place, but without a headache. Paula K. Dumas: How can something beautiful emerge from such an evil, debilitating disease like migraine? If someone asked you, what does a migraine attack feel like? What do you see, hear, smell, taste, and feel? It’s not that easy to describe. Words like agonizing, disabling, overwhelming, painful, or even surreal, might come to mind. Today, we have a special treat for you, an artist whose campus is the blank page, and whose brush is his distinctive voice. He’s one of America’s leading poets, who just happens to have migraine. He will share his migraine experience with us in much more colorful words and pictures than most of us can conjure, let alone stitch together in a cohesive sentence or stanza. Join us today to immerse yourself in the beauty of his poetry, and see if his migraine experience is anything like your own. We’ll be back to meet him right after this. Paula K. Dumas: Regarded as a young poetic genius with a style like no one else, Michael Dickman’s poems give a voice to the real-life sorrows, horrors, and joys of the human condition. He’s the award-winning author of five books of poetry, including Green Migraine. His poems have appeared in the New Yorker and the American Poetry Review. He teaches creative writing at Princeton University. He’s giving a colorful, authentic voice, to all people with migraine. Michael, welcome to Migraine Again. Michael Dickman: Oh, thank you so much and thanks for having me, Paula. Paula K. Dumas: We’re delighted to have you here. I’m kind of a poetry fan myself, which is why when I discovered your book, I couldn’t wait to invite you to join us on the program. Michael Dickman: Oh, good. Paula K. Dumas: Tell us a little bit about yourself. How did you become this rather famous writer at such a young age? Michael Dickman: You know, by accident, really. My twin brother, Matthew, is also a poet. I think it’s just something that I got excited about poems in high school, because of a friend, who had me read a book of poems that really kind of, it’s corny to say, but changed my life and made me want to write poems. Then I just kept at it, despite anything else happening in my life. Now I find myself publishing poems and writing and teaching. I’m very happy to do so. Paula K. Dumas: That is incredible. That is incredible. Well maybe by the end of this talk, someone in the audience will be inspired to take a stab at creating their own poem. Michael Dickman: Oh, they ought to, for sure. Paula K. Dumas: Ought to. You also happen to have migraine. Welcome to the club. Michael Dickman: It’s true, thank you. Paula K. Dumas: Yes. How old were you when you were first diagnosed? Michael Dickman: I would say high school. About a freshman in high school. I don’t have any memory of having a migraine before I was a freshman in high school. Paula K. Dumas: How do you experience them now? Michael Dickman: You know, I experience a kind of, at least what I think of as a kind of basic migraine. It’s really, really bad headache, nausea, vomiting, sensitive to light, any light. When I get them, I close myself off in a dark room and kind of wait it out. My migraines will last, a short one would be about 24 hours. I’ve had one or two that have lasted up to three days. Paula K. Dumas: Yeah. I can relate to that. Michael Dickman: Yeah, and it’s very frustrating, because I also have two small children, my son August, who’s five, and my daughter Mavis, who’s 17 months. I can’t, you know, cook for them, take them out, do anything. It’s frustrating, for sure. Paula K. Dumas: Yeah, as a parent, you feel incredibly irresponsible when you can’t fulfill the duties that you feel like you should be able to do. Michael Dickman: Absolutely, yeah. Paula K. Dumas: The younger they are, the scarier it is. The older they get, the more they can help take care of you. Michael Dickman: Exactly, yeah. Paula K. Dumas: While they’re young, they kind of don’t completely understand why is Dad so sick? Michael Dickman: Exactly, yeah. It’s a strange thing. You can’t see it. It’s not like you have a stuffy nose or a runny nose, or you know. Paula K. Dumas: A broken arm, yeah. Michael Dickman: A broken arm. It’s just like, it’s something both invisible and very painful as you know and as listeners would know. Paula K. Dumas: Yeah, yeah. Well, there is a lot of evidence about the genetic correlation for migraine. A number of genetic variants that show how it runs in the family. It’s always good to keep an eye on your kids, because their symptoms are different than ours. Michael Dickman: Right, right. Paula K. Dumas: Yeah. Well let’s talk about your poetry. Your collection, The Green Migraine, explores chronic pain through intense, fleeting images. The book is formed around five different migraine attacks, represented by colors, white, red, yellow, green, and black. Would you do us the honor of reading a couple of those? You want to start with, well, we’ll start with a premonitory poem, right, Bee Sting? Michael Dickman: Great. Yeah, let’s do that. This poem, Bee Sting, is a poem that I wrote that kind of feels, to me, or tries to get close to the feeling that I, what I experience right before the onset of a serious migraine. Paula K. Dumas: Mm-hmm (affirmative). Michael Dickman: I’ll just jump in to read the poem and we can talk about what that might be afterwards. Bee sting, crying in the cosmos. That doesn’t sound like you. Crying in our arms, and the cosmos in our arms. Missile static and after burn in the petals. Your yellow and black stingers. A child’s drawing. Some riddle from before we were born, that sounds like a river, and spreads on toast, and floats from flower to flower. The first needle. The honey in the pot. I’ve always wanted to wake up surrounded by buzz and fuzz. My head lifted by a furry crown sets sailing into the late drone afternoon, drifting at the speed of sound. My mouth, full of strange sunlight. Killer bumble honey in the brain. Dusting dear. I’ve always wanted to bump the stamen and start the universe swaying. Those ten thousand wings you hear coming for you are yours, my little honey bee. (CONTINUED) … For the Complete Transcript Click Here Enjoying the Podcast? Leave An iTunes Rating & Review Here RESOURCES Michael Dickman – Copper Canyon Press Green Migraine – Amazon The Migraine World Summit Understanding the Hypersensitive Migraine Brain – Dr. Todd Schewedt Migraine Again Find a Doctor ABOUT OUR ADVERTISERS (Interested in becoming an advertiser?)
45 minutes | 3 years ago
015: How to Make Healthier Choices, with Author Jenni Grover
015: How to Make Healthier Choices, with Author Jenni Grover Leave us a Rating & Review Here ***** It can take a long time to change good choices into habits. It’s super important to remember that progress is not linear. It’s a roller coaster, so we need to be willing to ride it. Even when the roller coaster starts to go down, we can throw our hands in the air and try to squeal with joy a little bit. Jenni Grover Author, Chronic Babe 101 SUMMARY Even though migraine isn’t your fault, we all have bad habits that can make the frequency and intensity of attacks even worse. It takes a lot of discipline to manage migraine and isn’t always fun. Yet the rewards of healthy time to spend with the people you love and do the work you choose can be worth the effort. Author Jenni Grover shares her secrets on breaking bad habits and keeping new healthy habits. 3 KEY POINTS Swapping out bad habits for healthy habits can take time and willpower, but the rewards are so worth it. Giving yourself grace for occasional lapses as you’re building new habits is essential. You’re still making progress. Your self-esteem will grow and your overall health will improve as you establish new habits for eating, exercise, sleep, setting boundaries and more. Show Notes Jenni Grover: I feel sometimes like people are going to think I’m a weirdo if I pull earplugs out of my purse, but who cares because I feel better if I don’t have to listen to all that loud noise all day, you know? So taking those little moments to integrate those tiny self-care things into your day, like the earplugs or carrying a water bottle or always having lip balm in your coat pocket or whatever, I think those things are super important, and they all contribute to setting up an environment that supports you in achieving your goals. Paula Dumas: Bad habits — We all have them. It takes a lot of discipline to behave well, and how much fun is that? Remember, migraine is not your fault. Yet, when it comes to migraine, you can do everything your doctor tells you to do and still fail repeatedly to get better. So what can you do? If you’ve got one bad habit that you’d really like to swap out with a healthier habit, today’s guest can help. She is a smart and sassy chronic babe who literally wrote the book on living as well as possible despite frequent pain. We’ll be back to chat with her right after this. Jenni Grover is the creator of an online community for chronic babes and chronic dudes with health issues who strive to lead positive, amazing, fulfilling lives. As a chronic babe herself, Jenni inspires a new confidence in her readers and helps them to craft a more fabulous life with chronic illness. Jenni is a frequent speaker who appeared on the 2017 Migraine World Summit, and she’s also the author of Chronic Babe 101: How to Craft an Incredible Life Beyond Illness, and founder of ChronicBabe.com. Jenni, welcome to Migraine Again. Jenni Grover: Paula, thank you for having me. I’m so happy to be here with you and your audience today. Paula Dumas: Wonderful. Well, my family and friends can tell you I’ve got some bad habits. Jenni Grover: Who doesn’t? Paula Dumas: Yeah, exactly, and some of those habits can make migraine attacks worse, even though they don’t cause migraine. And a few of them I wasn’t even aware of until I did more research and discovered some of my own self-defeating behaviors. So I think it’s essential that we’re at least aware of some of the habits that might be undermining the way we feel, the way we want to feel. Jenni Grover: Yeah, sure. Paula Dumas: Jenni, help us understand why you believe people form bad habits in the first place. Jenni Grover: Sure. Well I think that some of it starts with upbringing. We’re raised in households, taught different values and different approaches to life. So, for example, my household, donuts were the thing. We always had donuts. If we were … it was a Saturday morning we were driving to Shipley’s to get a big old box of donuts for everybody to eat, and emotional eating was just something that we did, so for me, I still continue to work on emotional eating, i.e., not doing it if I can help it, and that is a really hard habit to break because I had 18 years of it to start with. So I think our background, things like that, whether it’s our immediate family or our extended family, whether it’s friends or maybe it’s our school environment, we learn some bad habits when we’re kids that can be really tough to shake because they’re so foundational. I think also, speaking to that emotional eating, I think some of our bad habits can be very self-soothing, maybe not in the long-term, like you said you may realize later that in the long run they’re really harming you or maybe exacerbating your symptoms, but some of them we use as self-soothing behavior, so some people may feel like they really enjoy watching a comforting TV show at night before they go to bed, but then they later learn that having the TV on that late at night stimulates their mind and actually keeps them from falling to sleep at a regular time. So some of those habits we may feel like we have an emotional soothing we need or a physical soothing, and the habit might feel good in the moment but just isn’t great for us in the long term, and related to that, I think it’s the people we surround ourselves with. So for a long time I surrounded myself with friends … I’m a little bit embarrassed to say it, but friends who were pretty judgy and pretty short-sighted about some things, like in my very early years, and it wasn’t a thing that I did intentionally, but when I started to realize that I was doing it, I realized I was judging people and really judging myself quite harshly. So when I first got sick and got diagnosed, which was more than 20 years ago, with fibromyalgia and asthma and anxiety and a bunch of other things, I was hanging out with a lot of people who were pretty judgy, and I was kind of judging myself pretty harshly and really beating myself up for not being able to find a cure or not being able to find a fix or exacerbating my symptoms, and the more and more I phased those people out of my life that were very judgmental, the less judgmental I became, and I learned better habits about how I could speak to myself and definitely how I speak about others, and that has been a really good positive habit to learn, but I had to first unlearn it. Paula Dumas: Right. Judgment is contagious, but so is grace. Jenni Grover: That’s so true. That’s true. Paula Dumas: So let’s have a grace-filled space. Jenni Grover: I love it. Yes. I always try to approach things with a real spirit of compassion and try to understand everybody’s coming to this chronic illness or chronic pain life from different places. We all bring our own baggage and history, and the more we can make room for each other to not focus on self-doubt or self-blame, but focus instead on how can we work together to learn new ways to take care of ourselves? That’s always my focus. Paula Dumas: Sounds like a good focus. Some of my own habits, this is the confession part, that I discovered were a problem for migraine were things like sleeping in on weekends, drinking too much soda or tea, and then slacking off on exercise. What do you consider to be some of the more risky habits for people with frequent pain? Jenni Grover: Oh, Paula, I mean I have definitely done all those myself too, and I think that all three of those are really pertinent for people with any kind of chronic pain condition. I think … (CONTINUED) … For the Complete Transcript Click Here Enjoying the Podcast? Leave An iTunes Review Here RESOURCES Chronic Babe 101: How to Craft and Incredible Life Despite Illness (Amazon) Jenni Grover on ChronicBabe.com Migraine Again Articles 9 Healthy Habits to Feel Better with Less Migraine Medication The Migraine World Summit Jenni Grover on Migraine World Summit, Living as Well as Possible ABOUT OUR ADVERTISERS (Interested in becoming an advertiser?)
41 minutes | 3 years ago
014: Eating Right with Migraines, with Author Stephanie Weaver MPH
014: Eating Right with Migraines, with Stephanie Weaver MPH Leave us a Rating & Review Here Most doctors get absolutely no nutrition training in Med School. We sort of expect them to know more about it than they actually do. Stephanie Weaver MPH Author, The Migraine Relief Plan SUMMARY Food expert and author of The Migraine Relief Plan Stephanie Weaver MPH examines many of our assumptions about food and migraine that simply aren’t based in evidence. She offers encouragement to anyone who wants to eat right for migraines on choosing foods that can reduce painful attacks. She considers food to be just part of the “medicine” for effective migraine prevention. 3 KEY POINTS Food sensitivities are a very personal thing. Just because someone else is sensitive to soy or gluten or dairy doesn’t mean everyone is. There is no formal evidence for the low-tyramine diet recommended by many headache doctors, just patient-reported sensitivities gathered by clinicians. Given the lack of formal research on nutrition for migraine, the best way to test any diet for migraine like Paleo, Ketogenic, Sugar-Free, Low Tyramine is methodical self-testing and tracking of attack frequency and intensity over a period of time. Show Notes Stephanie W.: Yeast-free is trying to eliminate tyramine. Sugar-free is eliminating the inflammation that sugar can bring, and gluten-free is the same. You’re eliminating the potential inflammation that can create the environment in your brain that might make you more likely to trigger into a migraine attack. Stephanie Weaver Paula Dumas: Have you tried to change the way you eat due to migraine? Many of us have seen the extensive list of migraine-triggering foods, which is just long enough to bring on a full-blown anxiety attack, and that is not helpful. But if you’re curious about all the migraine diets out there like Paleo, ketogenic, yeast-free, gluten-free, sugar-free, and so on, do not miss today’s guest.She’s a wellness coach and diet expert who also struggles with migraine. She’s here to help us sort through the pros and cons of different diets and make it simple to eat well. We’ll be back to meet her right after this. Paula Dumas: Stephanie Weaver is the author of The Migraine Relief Plan, a gentle eight-week transition to better eating, fewer headaches, and optimal health. Stephanie has a master’s degree in public health and nutrition education and is also a certified wellness coach. In addition to her extensive training, Stephanie is also a professional wellness speaker, food photographer, recipe developer, and blogger. Stephanie, welcome to Migraine Again. Stephanie W.: Thanks so much for having me, Paula. Paula Dumas: We are delighted to have you here, and food is one of our favorite topics to dive into. My migraine was diagnosed at 24, just a few years ago, and shortly after I saw the doctor I went to this place that we used to call a library. Remember those places? Stephanie W.: Yes, I do. Paula Dumas: I went to the library and I checked out a book on migraine diets and I started my first attempt to control it with food. Your migraine attacks began later in life, which is kind of unusual. What’s been your experience with diet in terms of changing your own health? Stephanie W.: I have changed my diet for health reasons, I think seven or eight times over the course of my lifetime. I’ve had issues with allergies, I’ve gone vegetarian, I went vegan for a while, I ended up going gluten-free, so I have a lot of experience with changing my diet for health reasons. Now that I know what my migraine pattern is, I actually have had migraines my whole life, they were just quite atypical and so I didn’t get diagnosed until I was 53. I’m pretty sure I had abdominal migraines as a kid, and I know I had what I thought were weather headaches, and even though I saw different doctors and we tried different things, no one ever told me I was having migraines. Because I didn’t have aura and they weren’t incredibly disabling, I just kept on going with my life. It wasn’t until I started having vertigo that I actually got diagnosed. Paula Dumas: It was the vertigo that got you the diagnosis — that’s crazy. Stephanie W.: Yes, it is crazy. That was I think because post-menopause my symptoms shifted. Of course we never know because it is an unpredictable condition that we have, but that’s my guess, is that with my changing hormonal pattern the migraines started showing up as vertigo. Of course that was something that I couldn’t really ignore. I had to go find out what was going on. But I do have a really strong belief, and I guess it would be a bias (but I think in a good way), that food is an enormous part of our health and our wellness. That’s kind of how I approached this, as well as my doctor. The first thing he did was he gave me the “migraine diet sheet” which is the low-tyramine diet. That was what I went home with, and because I had this background in food and changing recipes and I’d been doing this for a long time, that was my interest as well, was what can I do to help myself feel better? I think a lot of people like yourself, we have that we want to feel more in control and so we’re looking for answers, and we do eat three to five or more times a day, so food seems like a natural place to start as well. Paula Dumas: Yeah, some of the doctors that we work with and who I’ve interviewed for the Migraine World Summit will say, “Why is food such a huge part of your content the EAT channel on Migraine Again?” I said, “Because we kind of think that food can be medicine, and it can be a big contributor to your wellness or how you feel, negative or positive.” It seems like many of the people in our community have the same orientation to that. Not everybody does, but many of them believe that food is a choice that is within their control every day. Stephanie W.: Absolutely. Paula Dumas: Learning to make better choices will in the long run pay out. Now, what made you want to empower others using diet as a catalyst for this kind of positive change in their health? Stephanie W.: I have a master’s of public health, as you mentioned, in nutrition education and so I’ve always been interested in nutrition. I started my food blog a little over seven years ago to try to help people who had to be on special diets for health reasons feel like they had great choices, so that it wasn’t about want and lack and “this isn’t as good as …”. Food can be, if you’re creative, food can be an amazing part of your life. Even if you’re gluten-free or you’re not eating sugar or you choose to go completely plant-based, you shouldn’t have to feel like, “Wow, I am eating less than other people.” It was a natural place for me to come in, so I came in with that mindset. I was working on my food blog, I was developing recipes, I’m given this diet list, and so of course I’m going to start researching. Even though I’m not a registered dietician, but I have a lot of nutrition background, and I had never heard of tyramine which is an amino acid breakdown product, so tyrosine is the amino acid, it’s a naturally occurring substance in food, I’d actually never heard of it. Apparently this was what was causing my migraines, according to this three page handout, which of course we know is not true. There’s many things that cause migraine, but that was where I started. Then as soon as I started looking into it, I realized wow, there’s a whole lot of not information that’s available. There’s conflicting information. Every list I looked at was different and so I was very confused, but I kept working at it because I did feel like I’ve seen good results in the past when I had chronic fatigue syndrome and I really shifted my diet, that really helped me. So I knew that there could be a potential shift. I wasn’t expecting to cure myself or anything like that, and I certainly don’t promise that to anyone, but I definitely have that bias. I think some MDs have that bias and some don’t. You kind of mentioned that earlier. If you talk to integrative medicine doctors, functional medicine doctors, they’re all about diet and lifestyle, whereas the allopathic doctors that haven’t gone into that level of training maybe, they don’t necessarily have that perspective. Paula Dumas: Most doctors get no nutrition training in med school. Stephanie W.: Correct. Paula Dumas: So that’s their orientation. Nor in continuing education. Stephanie W.: Right, because they’re choosing to keep up their continuing medical education hours in neurology or whatever their specialty is, and I totally understand that. We sort of expect that they’re going to know more about this than they actually do, and so that’s something that people should be aware of, is that maybe your doctor doesn’t know that much about nutrition. Mine said to me, “I want you to tell me everything you’re learning because you already probably know more than I do and I want you to fill me in.” That was a great partnership for me. Paula Dumas: That is good. That’s great that he or she was humble enough to welcome that from you. Stephanie W.: Yes, it was awesome. Paula Dumas: You know, I’ve tried a few diets to control my migraine attacks. I did five weeks on a yeast-free diet. That was the first one I tried. Felt amazing. It was incredibly effective until it stopped working. Then I tried eliminatin
37 minutes | 3 years ago
013: Coping with Daily Pain: Suffering is Optional, with Author Jennette Fulda
013: Coping with Daily Pain: Suffering is Optional, with Author Jennette Fulda Leave us a Rating & Review Here Once you are chronically ill, you have to learn to live the best life in spite of that. It’s maybe not the life you wanted. It’s not the life you expected but it’s the one you got. Making a joke or laughing about something can kind of help you not focus on the pain and have more of a positive attitude about it. If I were a dog, they would’ve put me down by now. Jennette Fulda - Author, Chocolate and Vicodin: My Quest for Relief from the Headache that Wouldn’t Go Away SUMMARY Jenette first fought the battle of the bulge, tipping the scales at 372 pounds. That is before she lost nearly 200 pounds through diet and exercise. Then in 2008, Jenette got a headache that she wakes up to every single day. Jenette has tried everything from Vicodin to chocolate to deal with her head pain, and found humor to be surprisingly therapeutic. So, she wrote a humorous memoir about her life with migraine to bring a smile to everyone else battling this perfectly evil disease. She tried to live the best life possible until she found what she calls, “Semi-wellness.” 3 KEY POINTS Acceptance is can be a turning point when you’re tempted to give up fighting daily chronic pain. Discipline is important, but don’t be too tough on yourself for making a bad choice now and then. Exercise caution when well-intentioned health care professionals are sure that the answer to your problem lies within their area of specialization. It’s your body and your wallet. Show Notes Jennette Fulda: Sometimes maybe you’re watching TV or listening to the radio, you suddenly realize you haven’t been paying attention for the last minute and you have no idea what they’re talking about anymore. Well, your ears were still working. You were still getting the input, you just weren’t paying attention to it. So, your experience is different. I think pain can be that same way, where you can’t cut off the signals coming to your brain but you can kind of modulate to extend how much you pay attention to it. That can then change how much you suffer from it. Paula Dumas: Have you ever said, “I’d do anything to make this migraine pain go away?” I know I have. Today’s guest has tried everything from Vicodin to chocolate and found humor to be surprisingly therapeutic. So, she wrote a humorous memoir about her life with migraine to bring a smile to everyone else battling this perfectly evil disease. We’ll be back in just in a minute to meet her. Let me welcome today’s guest, Jenette Fulda. Jenette weighed an ideal eight pounds, five ounces when she was born. But eventually tipped the scales at 372 pounds. That is before she lost nearly 200 pounds through diet and exercise. Then in 2008, Jenette got a headache that she wakes up to every single day. She tried to live the best off of life possible until she found what she calls, “Semi-wellness.” With biting humor and raw candor, Jenette chronicled her painful experiences in her books, Half-Assed: A Weight-Loss Memoir and my favorite, Chocolate & Vicodin: My Quest for Relief from the Headache that Wouldn’t Go Away. Jenette Fulda’s work has been featured on NBC’s Today Show, CBS’ The Early Show, and The Washington Post and on The Wall Street Journal. Jenette, how are you feeling today? Jennette Fulda: I’m feeling pretty good, kind of as well as possible. Paula Dumas: I know what you mean. So, let’s start. As a fellow cocoa connoisseur, I have to ask you about your love for chocolate first. I love it too. Jennette Fulda: Yes, it’s great. I know it can be considered a migraine trigger. I found with me, I don’t think my headaches are too linked to food. It’s one of those things where it makes you feel good and you just kind of weigh the pros and cons. Sometimes, it’s kind of worth it for me. Paula Dumas: Yeah and unfortunately as you said, health insurance doesn’t cover mint chocolate chip ice cream. Although, I wish it did. Jennette Fulda: No, it doesn’t. Paula Dumas: Sometimes it can make you feel so much better, when everything else makes you feel awful. Jennette Fulda: Yeah. Yeah. It’s kind of one of those small joys. When you’re in pain all the time, you kind of look for those little things that can make you feel better. Sometimes for me, I’ve had weight problem most of life. So, usually I kind of turned to food to make me feel better. Other people maybe turn to alcohol or drugs or stuff. But for me, it’s definitely always been stuff like the chocolate. Paula Dumas: There’s an interesting study that came out about chocolate, not being as big of a trigger as most people think. Jennette Fulda: Yeah I noticed some people think that it might just be people crave it when they start to feel a headache coming on because they feel bad and that maybe it’s not a trigger. Maybe it’s just a way of coping but I have no idea if that’s true or not. Paula Dumas: Yeah. Those food cravings can actually be premonitory symptoms of migraine, the migraine has already begun. So, how old were you when you first started experiencing head pain? Jennette Fulda: Well, I got one when I was about 21 years old. I went on a beta blocker and that actually kept it at bay for several years. But then on February 17th of 2008, I got a headache and it just never went away. So, I basically had a headache for nine and a half years, 24 hour a day, 7 days a week kind of thing. It’s called New Daily Persistent Headache. They don’t really know what causes it and it’s kind of difficult to treat. It does kind of modulate. Right now, it’s pretty low and I can function pretty well. But then other times, it will get intense, then it’s hard to do anything. It actually took me awhile to get that diagnosis. I think eventually after a few months, I Googled the right keywords. Finally, New Daily Persistent Headache came up in the results. From there, then I was able to kind of work with doctors on it. Paula Dumas: From what I understand about New Daily Persistent, it can have migrainous features. So, the line between New Daily Persistent and chronic migraine is pretty fuzzy. Jennette Fulda: Yeah. Most of the time it’s bilateral. So, it’s on both sides of my head, near my forehead and my nose and my sinuses. But then there are times when I will get unilateral pain on one side. If I get up earlier than usual, that always triggers a headache for me. I will sometimes get nausea then. It does have some of the same features as a traditional migraine. Paula Dumas: Now, when you wrote this book, you were a young adult. What’s it like to be a young adult, hanging around with a lot of other healthy, young adults but you’re living in daily pain? Jennette Fulda: Yeah. I think it gives you more empathy for other people, particularly older people. If I’m at the grocery store and I get stuck behind somebody who’s using a cane or something, I’m a lot more sympathetic to them, I think, than I used to be when I was a completely healthy person because your body breaks down. Sometimes your body fails you and there’s not that much you can do about it. I think it can be hard, particularly when your friends are going out a lot, when you’re a young adult. They want to go out to bars or things like that. Then like, “Oh man. Drinking is just going to make my headache worse. If I stay out too late, this is going to screw up my sleep schedule and that’s not going to be good for the headache either.” Sometimes you do feel kind of left out, you’re not able to participate 100%. You’re not really able to live your life, the way you really would like to when you’re kind of younger and doing those kind of things. Paula Dumas: Right. Your friends, at least, had a fun evening out to which to attribute their hangover in the morning. Jennette Fulda: Right. Yeah. Paula Dumas: Right. You called it, “A chaperone that kept me from going out,” which is an apt term. Jennette Fulda: Yep. Yep. It does kind of dictate your actions. You can’t do everything you want to do. Paula Dumas: It’s not the most attractive thing for dating either. Jennette Fulda: No, it’s not. It’s kind of one of those things. It’s a little bit difficult now with Google. If I go out with somebody, they have my name. Obviously, they can Google me and it’s right there. That’s what happens when you write a book about your headache, you make it very public. But it is one of those things that I kind of try to hold back till maybe the second date because it’s one of those things where you’re like, “Okay, let’s just see if we like each other first. Then maybe we’ll deal with this.” Paula Dumas: Maybe they won’t do their research. So, you can hope for that. Jennette Fulda: Maybe. I don’t know. People are pretty good about that these days, I think. Paula Dumas: One of the cool things about your story that I saw was that you fought the battle of the bulge and of the brain. How did you approach each one? Jennette Fulda: Well, I had lost. Like I said, I had spent about two years, just eating better and exercising. I’d lost about 200 pounds. I was finally at a pretty healthy weight. Then I got this headache and like I said, my way of coping is a lot of food. Your food and humor are kind of the two ways I cope with bad stuff in my life. I did find myself on the way back home from work, I would stop
37 minutes | 3 years ago
012: Your Headache Forecast with Meteorologist Alexandra Steele
Changing weather is among the top Migraine triggers. Monitoring weather patterns and tuning into a headache forecast can help prevent headaches and migraine attacks. Meteorologist Alexandra Steele explains which weather patterns and regions are riskiest for people with Migraine or frequent headache pain.
32 minutes | 3 years ago
011: Migraine and Sleep: A Love/Hate Relationship, with Christine Lay, MD
The relationship between Migraine and sleep is complex - sometimes it helps, sometimes it hurts. Dr. Chistine Lay helps unravel some of the complexities.
41 minutes | 3 years ago
009: Fighting Migraine with Words, with William Young MD
Part of our battle with migraine stems from how we speak. Neurologist Dr. William Young advocates for fighting migraine with words that can combat stigma.
24 minutes | 3 years ago
008: Famous People with Migraine Who Thrived, with Andrew Levy PhD
Can migraine be a catalyst for unclogging your brain? Many famous people with migraine produced important works after attacks, from Jefferson to O’Keeffe.
37 minutes | 3 years ago
007: Rewriting Your Migraine Story with Andrew Levy PhD
Your migraine story doesn't have to be stigmatized and never-ending. Levy shares his story and guidance on reframing your personal narrative.
37 minutes | 3 years ago
006: Migraine Personality Fallacy with Sociologist Joanna Kempner PhD
So is there such a thing as a migraine personality? Listen to sociologist and author Joanna Kempner as she enlightens us on the Migraine Personality Fallacy and more.
33 minutes | 3 years ago
005: Juggling Your Kids and Your Health with Dawn Buse PhD
Parenting is a tough job, and migraine makes it even harder. Listen to therapist Dawn Buse offer tips on how to balance kids and your health.
40 minutes | 3 years ago
004: Battling Migraine in the NFL with Terrell Davis
Imagine powering through a migraine in the NFL. MVP Terrell Davis shares his migraine story from SuperBowl XXXII. Inspiration to keep fighting.
32 minutes | 3 years ago
003: The Dangers of Hiding in the Dark with Dr. Bradley Katz
Migraine light sensitivity is a common symptom. Listen to eye doctor Bradley Katz explain why spending too much time in the dark can be a bad idea.
32 minutes | 3 years ago
002: Dispelling the Headache Myth, Featuring Paula Kamen
There are many types of migraine. Author of four books, including All in My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache, Paula Kamen was diagnosed with NPDH. With witty humor and solid research, Paula Kamen offers voice and hope to fellow travelers on the migraine journey.
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