This post might even save your life.
No hyperbole there, Dolls. Martine Ehrenclou has that much to teach us about taking charge of our own medical care. And for us chronically pained peeps, being a Take-Charge Patient is not optional. It’s mandatory.
Full Disclosure: Martine’s one of my clients at Stage Presence Marketing. One of the things I’m helping her with is the blog tour for the launch of her new book, The Take-Charge Patient. But even if she wasn’t a client, I’d still hop over barrels to get her on this blog, because her message is that important for the readers of this site.
Today is the day Martine’s newest book, The Take-Charge Patient, is released. I’m thrilled that she agreed to an email interview with Euston Arch as one of the first stops on her blog tour. You can find out more about Martine here, and more about the book on the book’s site here. Be sure to head over to the Facebook page for The Take-Charge Patient, and also follow Martine on Twitter, ’cause she regularly shares helpful links and news on issues related to patient care and advocacy.
Also, on Friday, May 18th, I’ll be posting the Euston Arch’ review of The Take-Charge Patient, so be sure to come back then! Grab your own copy here at Amazon. (Not an affiliate link.)
Here we go!
What’s the main message of The Take-Charge Patient, and why is it so crucial that we hear it these days?
The main message of The Take-Charge Patient is that as patients we must advocate for ourselves.
We can’t change our health care system, but we can change how we approach it. If we approach our physicians and other medical professionals as if we are approaching a business meeting, we come prepared to medical appointments. We enter the office empowered and more confident.
If you bring your car to the mechanic, you are equipped with information on what is wrong with your car, right? Approach meetings with physicians in the same way. Know something about your symptoms, about your medical condition, gather copies of your medical records (always keep a copy of them for yourself) and prepare for a meeting with your doctor. You make the most of the interaction that way, and you present yourself as a credible patient.
Doctors no longer have the time to spend with patients that they would like to. If they take health insurance, we get about 7-15 minutes with them. Doctors aren’t going to change. We do. Because we need to make the most of our medical care and take some responsibility for ourselves as patients. Passivity just doesn’t work anymore. Traditional patients enter into relationships with medical professionals expecting them to handle everything, to know everything, to keep track of everything and prevent every kind of medical error. That may have worked many years ago, but not anymore.
Take-charge patients take charge of what they can. We are empowered, knowledgeable, organized and we ask questions when we don’t understand something (even if it’s scary).
1.5 million people are harmed by medication errors each year. Every medical professional involved in the process from prescription to fulfillment of the medicine, is multi-tasking, taking care of too many patients and has too little time and can easily make mistakes.
Unless we are our own advocates, we will be victim to a system that at times can seem determined to beat us.
What prompted you to write this book?
I wrote The Take Charge Patient because after writing my last book, Critical Conditions, which is about how to be an effective advocate for a hospitalized loved one, I knew I had to write a book about how to advocate for oneself to get the best medical care.
Six months into my interviews of over 200 physicians, nurses, pharmacists, health psychologists, other medical processionals and patients, I developed severe pelvic pain that last 16 months. I saw 11 physicians of differing specialties, and 3 alternative medical professionals in effort to find an accurate diagnosis and cure for my pain.
10 misdiagnoses later, plus 11 tests and procedures, 22 medications, I still had no accurate diagnosis and no cure for the pain.
Ironically a few months into my chronic pain condition, I realized I was living each chapter of my new book, using so many of the strategies that I had learned from the interviews and from hundreds of hours of research. I went from advocate for others to advocate for myself. This was a brutal journey but one that put my own strategies to the test. It is one thing to write a book from research and it is another to live it.
My extensive research led me to a New York Times article on hernias in women. As I read that article, my heart sped up and I knew in my gut that I had the same diagnosis as the woman described in the article. Call it a strong gut feeling or simply that the woman’s symptom profile was exactly like mine. Luckily, the surgeon mentioned in the article who cured the woman was at a teaching hospital in Los Angeles. I was on the phone within two minutes making an appointment.
Dr. Shirin Towfigh did tests and a thorough exam. She was so lovely and treated me so respectfully. She heard my story, listened carefully. She ran tests. She then did surgery and cured me. She found an inguinal hernia with a nerve passing through the hole, a muscle tear at my C-section site. I have been pain free since August of 2011. I am so grateful to Dr. Towfigh. I’m also grateful that I didn’t give up and that I was persistent as my own medical detective.
One of the main problems those of us in the chronic pain community are facing these days is the fear of being labeled as “drug-seeking.” That fear can keep us from speaking up to doctors when we really need to. What are some of your best tips for CP patients to deal with that fear and learn how to speak up and advocate for ourselves with our medical providers?
I understand the fear of being labeled “drug seeking.” I also completely understand being afraid to speak up to doctors. We are raised to view them as gods, to not interfere, to be submissive and compliant.
Chronic pain patients can too easily be labeled as “drug seekers” or “difficult patients.” The latter, I believe, is because doctors get frustrated and lose self confidence when they cannot “cure” the patient so some blame the patient instead.
Here are a few tips:
If you organize and educate yourself as a patient this serves two purposes:
- You empower yourself and increase your self-confidence.
- You increase your credibility as a patient and many doctors will take you more seriously.
So what does organizing and educating yourself mean?
It means being prepared for a meeting with a doctor. Preparation involves the following:
- Create a health file complete with copies of your pertinent medical records so you can go to any medical professional without having to rely on any doctor or pharmacy to provide anything. You have your complete medical history in a packet so a doctor or other medical professional can view it all in one sitting.
- Create a chronology of events starting with the first time you experienced symptoms or pain. Describe when it first came on, what makes it worse or better, when it occurs most often (such as late afternoon or evening) and list what you have tried that either helps the pain or has no effect.
- List the physicians you have seen, their contact information and on what dates.
- List the tests and their results.
- Get copies of all tests, procedures and surgeries and their results. Include them in your health file. Keep a copy for yourself.
- Create a list of your current medications and their dosages, over-the counter medications, herbs and supplements.
- If you have a diagnosis, list it and which doctor gave it to you and on what date. Research that diagnosis only on credible websites and from credible resources. Nothing discredits a patient more than bringing in information from a fringe website and a doctor has to spend valuable time discrediting the information you’ve found. Credible websites are academic, government and professional medical society/academy organizations. They end in .gov, .org and .edu.
- When you take charge of your medical information, become knowledgeable about your condition and what you’ve been through, you not only present yourself as a credible patient but you increase your self confidence.
- Come prepared for an office visit with a list of questions, and top three medical issues you want to discuss with your doctor. Write it down ahead of time or keep this information in your smart phone or on another kind of electronic device.
There were times during my chronic pain condition when I was intimidated by doctors. I tried to counteract that with preparing ahead of time for the appointment and I dressed professionally as if I was about to enter a business meeting. As a chronic pain patient, I wanted the physician to take me seriously. I wanted his/her respect. I wanted to be seen as a credible reporter on my body and I wanted to be viewed as a patient who was invested in my health care—someone who took charge of what I could.
Preparation is key to patient confidence. It makes it easier to ask questions.
Don’t let the doctor’s lack of time scare you off. This is your time, you are paying for it (health insurance or not) and you deserve to be treated respectfully and have your questions answered.
Many physicians I interviewed said that it is important for patients to stay on track. Try not to bring into the conversation what your sister told you to do or what your friend’s doctor did for her.
This is about increasing your credibility as a patient.
Try to talk in a cognitive manner (less emotional) and you’ll find that doctors might respond and listen more carefully. Doctors are cognitive thinkers. This isn’t to say you can’t cry, act frustrated, depressed or whatever it is you are feeling—it just means you try to think about using strategies that help you get the most out of your office visit.
Do you think the failure to advocate for ourselves as patients is quite literally killing us? In what ways?
Failure to advocate. Passive patients receive less than optimum care. If you do not interact with your medical provider, ask questions, works as a team player, educate yourself about your medical condition and your medications, you risk leaving a doctor’s office or hospital not knowing exactly what your diagnosis and treatment plan are. You put yourself at risk for being treated incorrectly, subjected to medical errors, poor communication and substandard care.
Advocating for yourself takes guts. I won’t kid you. It’s not always easy. Enlist the support of a loved one to go with you to a medical appointment. Gather whatever it is you need to oversee and monitor your own care. This is your life we are talking about. 100,000 people die every year because of medical errors.
1.5 million people are harmed by medication errors every year. This is the easiest medical error to prevent. Participating in your medical care is simply essential now.
Sometimes it feels like dealing with chronic conditions is a full-time job. What are some ways we can manage our own care without going nuts in the process?
I really understand how dealing with chronic conditions can feel like a full time job. At times, when I had my chronic pain condition, it felt like that to me.
Do what you can to take charge of what you can for yourself as a patient. This reduces a sense of overwhelm and helplessness. It allows you to put the whole process aside at times, which is essential for not going nuts.
Once you’ve done that, try to divert your attention elsewhere. That’s not easy to do, I know. But what helped me during my 16 months of chronic pain was to do my best to focus on my work, my husband and children. I watched movies. I tried to change my focus from my medical condition to something else that was positive.
It didn’t always work and there were many times when I simply fell back with frustration, anger and fear. I spent a lot of time crying to my husband. It was not easy. But I believe what kept me from losing my mind was my refusal to give in completely to my medical condition. I stopped talking about it to most people. When people asked, “You still have the pelvic pain? Why haven’t you found an answer?” it made me feel worse and more afraid that I would never find the answer or be out of pain. So I stopped interacting with those people about my medical condition.
I chose who I interacted with very carefully. I paid attention to how I felt with certain people. There’s nothing worse than well-meaning loved ones pummeling you with questions about your medical condition because they are anxious about it.
Get an advocate. Find a loved one who is medically savvy and ask her/him to partner with you in your journey. Can she/he go with your to a couple of medical appointments? This takes some of the burden off of you and it helps to converse with someone after a medical appointment. I enlisted a good friend who was very medically savvy as my advocate.
Find others who deal have your medical condition but look for people who are successfully dealing with it. It doesn’t mean you have to find someone who no longer has your condition, but it’s important to find people who are still managing their lives and living with the condition. This is about helping yourself. I found other pelvic pain patients who I could talk to but I was careful about interacting with people who were completely consumed with their medical condition at all times.
What’s the biggest misconception about patient advocacy, in your view?
The biggest misconception about patient advocacy, in my opinion, is that patients or medical professionals view it as usurping the job of the medical professional. Not so. They are the experts, not us.
Patient advocacy is about implementing strategies I’ve suggested in my books to support your doctors’ efforts not to replace them. But it’s also about educating yourself so you can decide for yourself if a treatment plan is right for you or if a diagnosis sounds right according to your research or second opinions with other physicains.
Patient advocacy is about advocating for the patient but it’s also about being savvy with medical professionals and developing good communication skills so you can interact with them without stepping on their toes. You want collaboration and the way to get that is to diplomatically partner with your doctor. Many doctors are very open to this now because in the end an educated, empowered patient helps them too. But some still are not. If not, walk away. I met with two doctors who were not interested in a collaborative relationship with me as a patient. I walked away.
This page lists doctors suggested by other patients with fibro and ME/CFS (or chronic fatigue syndrome, as some still call it), by U.S. state and not-a-few other countries. The theory is similar to Angie’s List, the site that lists service providers with customer-written reviews — the doctor who is referred by other patients is more likely to actually be a good choice for women with these conditions.
That said, some of the doctors on the lists were self-referred — in other words, they submitted their own names with the affirmation that they were “fibro-friendly” or “ME/CFS-friendly” and had significant experience treating patients with these illnesses. All self-referred doctors have a note to that effect beside their entries.
There’s a reason I found and decided to add this resource to Euston Arch, and it’s not a pretty story. But it’s a story that needs to be shared. Share it I will — tomorrow. (It’s taken me several days to process what happened sufficiently to write about it cogently.)
‘Til then, take a look at the Co-Cure Good Doc list, and see if your primary care provider is listed — or if, perhaps, there’s a better choice for you out there in your community.
Hey Dolls! Just wanted to alert you that the Resources page is being revamped. We’re adding subpages by condition, so it’s going to take a while to get the list back up and functional.
But once it is, we think you’re gonna dig it for sure. Hopefully, it will be easier to find exactly what you’re looking for, and that’s our raison d’etre, so to speak!
FibroWHYalgia: Why Rebuilding the Ten Root Causes of Chronic Illness Restores Chronic Wellness — Susan E. Ingebretson. Published by Norse Horse Press 2010.
The One-Minute TTD Review
Sue Ingebretson’s new book, FibroWHYalgia: Why Rebuilding the Ten Root Causes of Chronic Illness Restores Chronic Wellness* is a must-have addition for any fibromite’s library. Ingebretson’s personal history with the illness illuminates with good humor and compassion a difficult topic for all chronically ill people: the role of personal choices in the recovery process. Packed with solid scientifically-supported advice wrapped in a common-sense approach, FibroWHYalgia will help any fibromite thrive.
About the Author
Sue Ingebretson’s bona fides to write this book are solid. Her involvement in the fibromyalgia community extends back fourteen years. She’s the Director of Program Development for the Fibromyalgia Research and Education Center at California State University, in Fullerton, CA. Sue’s also written for the NFA’s FibroAWARE publication. And, of course, she has fibromyalgia herself.
Overview of the Book
Sue tells her own story through the first three chapters, illustrating the path so many of us tread on our way to diagnosis and treatment plan success, through humorous and sometimes maddening accounts of the endless parade of doctors with varying degrees of insight into her worsening health.
Chapters four through eight cover different aspects of Ingebretson’s philosophy of treatment: diet, exercise, stress reduction and emotional balance, plus strategies for meaningful change. The last chapter summarizes what Sue calls the “ten root causes of chronic illness” — genetic predisposition, physical trauma, emotional/mental trauma, malnourishment, external toxins, internal toxins, inflammation, infection, hormonal imbalance and thyroid dysfunction.
The Extended Review
Sue’s hit this one out of the park, for the most part. My shelves are overloaded with books promising a variety of fabulous outcomes – promising mind you – but never quite delivering. I came to the conclusion after deep and thoughtful study of this subject for over ten years that (A) there is no cure for fibromyalgia and (B) any successful treatment plan must be simultaneously comprehensive and flexible.
Sue’s approach confirms my own suspicions about this illness, and outlines a workable get-tough plan that’s both realistic and ambitious. Ambitious because any change will be hard for us mortals; realistic because it doesn’t require massive doses of questionable supplements and radical overhauls of lifestyle.
Well, back up – I suppose that depends on your definition of “radical.” For some, undoubtedly, the changes Sue advocates for diet and exercise will seem radical. But Sue’s writing style has a relaxed, reassuring tone to it — rather like having a long heart-t0-heart with an older sister who’s been down that road you’re walking for the first time and knows just how to navigate it.
There’s nothing revolutionary here – but that’s a good thing in my opinion because it reflects reality. There is no magic pill — no one treatment to rule them all. The implications underlying Sue’s book suggest that maybe there is no such treatment out there waiting to be discovered, because the systems and mechanisms at work here are way too complex to be resolved by a single approach. I think she may well be on to something.
But even if there is such a treatment out there, just waiting to be discovered, we still deserve to thrive while we’re waiting. FibroWHYalgia presents a compelling argument for one approach to getting there. Easy? No. But simple, and practical.
Bottom line: Buy it. Read it. Reread it. Take it to heart.
*Remember: all links to products are affiliate links. Costs you nothing extra, but helps me keep this site afloat!
I’m probably most excited about being back up and running again on the interwebs because of this one post, right here: an interview with Susan E. Ingebretson, author of FibroWHYalgia: Why Rebuilding the Ten Root Causes of Chronic Illness Restores Chronic Wellness.
(Please note: All product links are affiliate links. That means you pay exactly the same amount, but I get a little bit for your purchase, which helps me keep this site going to bring you all more great stuff like this post!)
I’ll be reviewing the book in a subsequent post. Right now, grab a cup of coffee (or even better – green tea) and meet your newest fibro-friend and mine — Sue Ingebretson.
Sue, thanks so much for doing this. Tell us how you got “introduced” to chronic pain, personally.
I think I’ve had the “typical” fibro body since puberty. I didn’t know it then, but the difficult menstruation, digestive troubles (that’s a kind way to refer to the intestinal tornado), dark under-eye circles, etc. all reflect someone starved of nutrition. That, paired with my environmental exposures to toxins (farm chemicals) made for a likely path of pain. I don’t believe it’s coincidental that my first exposure to dental mercury and my first experience with IBS came at the same time. Stir in the mix of hormones, and there’s a recipe for pain and general poor health.
My first experience with chronic pain came at age 15 after a school bus accident. The bus went off a bridge (swung off with the front axle stuck on the guardrail and the rear of the bus stuck on the creek bank). I was lucky to have only suffered a concussion and a broken nose. However, relentless pain followed that event for several years. It just sort of faded away in my early 20’s as a new mom I became “too busy” to pay attention to it very much (of course that’s an over-simplification). I was aware of chronic low back pain, but just thought it would be with me for life.
It seemed to wax & wane depending on circumstances and other injuries. The IBS, however, never really went away.
Had you ever known anyone with chronic pain before your symptoms started?
During my school years my mom was always sick. Now we know she suffered (needlessly) with terrible food and environmental allergies. At the time, though, it was awful seeing her cough, sneeze and walk hunched over from pain. I’m sure that today, she would be diagnosed with fibromyalgia. At that time, the doctors were terrible to her. Small town doctors gave her very poor advice.
What prompted you to write this book?
I was active in my writer’s group working on various children’s projects. I’ve always loved writing for children and teens. As I succeeded in my personal journey to get healed, I found myself speaking on the subject as well as answering many desperate phone calls and emails. I told my writer’s group that various projects were on hold pending this or that speaking engagement. It finally became apparent that I needed to write down my experience, so I could give people a bigger picture of healing rather than a 30 minute phone call or back and forth emails. I intended to write a quick “health pamphlet” and be done with it. Instead, it took three years and ended up as a book.
In the book, you write (very humorously, I might add!) about your myriad experiences with the medical profession in seeking a diagnosis — what I call “the bad doctor stories.” Were you satisfied with your response to the “bad” doctors — the ones who dismissed you, the one who told you to be grateful you didn’t have heart disease — I especially liked the one who told you that you were afraid of getting older! Anything you wish you’d have said or done in retrospect? Or, alternatively, any advice for people currently seeking diagnosis who are dealing with their own “bad doctors”?
I have lots of things I’d like to say to my “bad” doctors, but I won’t. It makes me think of a friend who has a t-shirt that says, “I’m a writer. Be nice to me or you’ll end up in my next novel.” [NB from Sherrie: HA! I totally am stealing this.] There’s something to be said of writing down your injustices, however, I have no intention of giving them my book and saying, “So there.” I doubt it would make much difference. I just feel better myself for getting it out there. I’ve heard hundreds of stories from others who all have their share of similar (and/or much worse!) stories. The thing is, many doctors are simply working with the limited knowledge that they have. Very little is discussed in medical school about autoimmune conditions and about fibro. They’re tough to nail down (diagnostically) and tough to teach. It takes a dedicated doctor who is interested in and/or specializes in neurological and immune system conditions.
My advice for anyone dealing with doctors is to be as business-like and prepared as possible. When you give vague information, don’t be surprised at vague responses. Go with notes & questions. Ask for a specific action plan. If you feel your voice is not heard, move on! Find another doctor who will listen. They are out there.
We frequently hear “it’s all in your head” — which, as you point out, is somewhat accurate, since that’s where our brains are located, generally speaking (I wouldn’t presume to generalize, of course…). I have a theory that this phrase has become such a hot-button issue with the chronic pain/fibro community that we reject the very measures that could help us – meditation, cognitive behavioral therapy, even antidepressants — because we think we’re being told the pain has no biological cause, which of course isn’t true at all. In a manner of speaking, we’re at risk of cutting off the nose to spite the face. What do you think of my theory?
I agree with you, and here’s why. We all agree that stress is a HUGE factor in fibro, right? Where does stress originate? From thoughts, the brain. You don’t say, “my pinkie finger hurts, it must be stressed.” Stress is a mental/emotional component of illness that has VERY physical results. The thoughts/emotions are real, and so are the symptoms. The conflict comes from the (erroneous) perception that if it’s as simple as a thought, we could stop it or somehow have control over it. We can, in a way, but it’s not simple at all.
Stating that any condition is “all in your head” implies CHOICE. We choose to be sick. We choose to watch our bodies physically fall apart. That’s just silly. No one would choose that. The problem is that some of our actions are exacerbating our symptoms and it’s a learning process to find out what to do about it. Cognitive Behavior Therapy can be very impactful. I just took part in an 8 week CBT study that I found fascinating. Everyone in the group had positive results and I look forward to seeing the study published.
Again, the hot-button issue comes from the insinuation that we could do something about the condition if we only wanted to. There’s kernel truth to that, but not in the way that it’s meant. The comment is a hurtful, and non-productive jibe.
What’s funny is that I now feel so confident in my understanding of why I have fibromyalgia, that I don’t take comments like that personally at all. I’ve been in groups where others get fired up about the legitimacy of their condition. I don’t give a hoot. If someone wants to rant about fibro not being real, that’s their issue, not mine. I know exactly what I have and I take seriously my responsibility (to myself) to do something about it (self-care). I’m not personally offended at all by what I see as ignorance in others.
How can those of us who’ve been at this particular dance for awhile now best help those who are just getting here? What can we do better to advocate for and help the newly-diagnosed get the treatment they need? To put it a different way, how can we empower the newly-diagnosed fibromites?
I love this question! First thing is to blow away the mis-information found in media, doctors, articles, etc. that tell newbies of their dire future. That simply is NOT the case. I know many, many people leading full, busy, productive lives with fibro and other chronic conditions. The body is DESIGNED TO HEAL! YAY!
I had a friend once with a temperamental sports car. He knew it so intimately that he could tell by the sound of the engine what it needed. He lovingly cared for that vehicle and it served him well with nary a hiccup. Too many of us treat our bodies as vehicles that should always go when we step on the gas — never mind that there’s no fuel in the tank and there’s never been regular maintenance.
Another big misconception is that fibro is degenerative or progressive. It is NOT. The condition may progress or worsen IF the body is not cared for and allowed to deteriorate. That would happen to anyone. What if we took a completely healthy person, put her in bed most of the time, fed her foods with little to no nutritive value, and asked her to think constant negative thoughts. What would happen to her body? Would she deteriorate? The body needs oxygen, movement, nutrition, hope for a positive future.
Guess I got off on a tangent, but I am passionate about grabbing the newbie before he or she can be indoctrinated into the Eeyore thought process that nothing will change. A body in pain is an intelligent body. It’s telling you (OK, maybe screaming at you) that something is wrong. Something needs to be fixed. Only you can determine what that is and get to work.
On another note, I’ve personally experienced and seen that fibro in newbies has a better chance of diminishing or being next-to-non-existent once they figure out what to do to fix it. (I never say it permanently goes away). I’ve seen people who have not been ill that long, go on crusades to fix their bodies and do very, very well. That was the case for me and I was symptom-free for quite a while. Maybe a year or two? Then I slacked off on my health maintenance and took my wellness for granted. The fibro came back during a time of extreme stress. It’s never come back nearly as bad as it was before, but it’s still there — just a wee bit.
So — there again — I encourage newbies to take charge, take action, and figure out your own game plan!
In your book, you advocate a “cleaner” diet (more organic, lower on the food chain) and exercise as the starting point for a fibromyalgia treatment plan. How can those of us who are suffering economically and those of us particularly prone to post-exertional malaise begin to implement these lifestyle changes?
I can only speak for myself and from the experience of others I’ve seen, but repairing a body nutritionally has profound results. The same goes for fitness, but I’ll start with foods.
It’s been my experience that healthier foods can be much cheaper. Boxed, packaged, processed foods are pricey. You’re paying for the packaging and advertising, not the products. Processed foods are made of the cheapest ingredients on the planet. Water, HFCS, trans fats and artificial flavors and colors are the main four ingredients in almost all packaged foods. They’re cheap (for the manufacturer) and a source of empty, crappy calories.
I always say to buy the best quality foods and supplements that fit within your budget. Understandably, not everyone can buy always buy organics. But it’s a trade-off. Maybe you can choose the organic broccoli and pass up the toaster waffles? It’s all up to you. For me, it was a long process. I had to learn to value my body and decide that it was worth the “better” ingredients. Again, better does not always mean more expensive.
I go into detail in my book about soup. It’s about the cheapest thing you can make. Healthy, satisfying, nutritious. Beans are cheap, too. Produce can be. I can go to a local swap meet and come home with bags of produce for under $15. Maybe you can seek out local markets? Local growers? Better yet, make a small garden a family project this summer. You can’t get a cheaper food than buying it from seed. I’m no expert, but I’m told many veggies grow abundantly with very little care.
As far as fitness goes, my theory may be controversial. I believe that you have to keep moving. Yes, I know it hurts. I used to hurt (terribly), too. I believe that the more fit you are, the more oxygen you pump through your body (fibro people are shallow breathers), the healthier you will be. Start out slowly, but KEEP GOING. Don’t stop. Obviously, you don’t want to cause physical damage — especially if weight is a significant issue for you — but seek out fitness routines that are non-impact. Simply jiggling on a mini-trampoline is powerfully healing for both the body and the mind. Remember that the brain gets a big boost from exercise, too. Tai chi has been around for a bajillion years for good reason. It’s non-impact and provides a great body/mind benefit.
Try walking, Wii, ping pong with the kids, swimming, the gym, etc. Whatever you do, make it routine, meaning do it regularly. Vary your activities so you’re not doing the same thing each time and keep going. Grab a friend for accountability. Write down your goals (and sign it!). Chart your progress. Whatever you need to do to motivate yourself. It doesn’t take much exercise. Even 15 minutes a day 3 or 4 times a week is better than nothing. Exercise and eating right is your way of telling yourself that you are important enough to care for. YOU have value!
I love the whole book – and I’m totally not just ass-kissing here – but I think my favorite part is where you discuss the “perfect environment” for fibromyalgia to flourish. “Talk” a little more about that.
You’ll probably note that I really say the same thing in my book over and over in different ways. Different people need to hear messages differently. I wrote that part in sort of a knee-jerk reaction to several people I was “dealing” with at the time. As I mentioned, I’m often referred by others with fibro, so I used to get a lot of phone calls and emails (I now try to limit it to email). Anyway, that section is sort of an amalgam of a couple of people I was dealing with. They said they wanted health. They said they wanted to get better. But their actions did not reflect that. No one wants chronic illness, but many people are surprised to learn that what they’re doing is making what they already have much worse. I sort of hold a mirror up to that. They might not always see a reflection that they like (and they might not be happy with me), but it’s meant to encourage and educate. In all things, I try to affirm people. BTW, I see myself in that reflection, too.
You write about achieving balance in Chapter 4 and later in the book as well, but balance isn’t a static condition, of course – it’s a constant series of readjustments, and sometimes we need to play both sides of the extremes in life. Where do you stand on the question of “honoring your limits” or “pushing beyond those limits”?
Boy that’s a good question. I had to learn (the hard way) to set personal boundaries. I had to learn when to say no to others and when to say yes to myself. That’s a tough lesson for many moms, in particular. At the time when I discovered “balance,” that was quite the novel idea for me. I thought I was only worth what I could produce or do. I didn’t see any value beyond that. That’s where balance comes in. My view of balance 5 years ago looks nothing like balance for me today. Now, I am much more relaxed, calm, content. It’s a long twirly path.
It took quite some time to hear my inner voice tell me when I was honoring my abilities and when I was not. It’s a learned process. It’s not really one that’s easy to teach. It’s a self-guided journey.
I see your “pushing beyond those limits” comment in two ways: physically through exercise, and physically/emotionally through activities. I do believe in pushing yourself through fitness to places beyond your belief system. When I walked with a cane, I certainly did NOT believe I could become a gym rat and lift weights 6 days a week (I no longer do that, by the way, and need seriously to get back to it!).
The point is that my belief system told me that my body was broken and had limitations. Only by experimenting and challenging those perceptions did I learn that they were not accurate. No one could tell me that, no one could show me that in a book, or teach it in any way. I had to learn that for myself.
And, for physical/emotional activities, I make planned, pragmatic choices about the activities I participate in. This past weekend, I attended a 3 day expo about an hour away from home. The drive each day, the full schedule of workshops, and the stress it brought was absolutely exhausting. However, it was a health expo that I thoroughly enjoyed it and felt it was worth the battering my body took. I did push beyond my limitations because I deemed it important and valuable. It passed my personal benchmark for importance. Would I have done that for a Star Trek convention? Not on your life!
All I can say is that challenges are good. How can we know what we can do without challenging ourselves to do it? I have a friend who was significantly overweight for much of her life, and now runs marathons. She’s an amazing example of a person who has challenged her own self perceptions.
What do you think it is about fibromyalgia that makes one person’s treatment another person’s waste of energy and money? Why can’t one treatment rule them all?
We are all so very different. From a personality standpoint and physiologically speaking. We each react to foods differently. We react to experiences differently. There are more factors causing us to be unique than causing us to be the same. We’ve sort of taken on the erroneous idea that meds and treatments are a one-size-fits all solution. Go down a pain relieving aisle at the drug store and see how many different headache remedies there are. Some feel Exedrin is best, for others it Advil, or Tylenol. We each metabolize what we take internally in our own way. That’s why nutrigenomics is so exciting to me. It’s exciting to think of a field of medicine that is tailor-made for me, specifically. It’s a growing study.
The sad thing about fibromyalgia patients is that they’re often “sold” treatments as something that works for everyone. Then their pain is compounded by feelings of failure. As if they’ve personally done something wrong.
There is NO ONE treatment that works universally. There are many healing factors that work for most, if not all, like what I call the Restoration Trio (nutrition, fitness, stress-relief/emotional wellness). But even within those treatments there are a myriad of options available. That’s why it’s so important to figure out what works for you. The only way to do that is to create an action plan. Do something!
What’s the best advice you’d give to someone in the throes of a horrid flareup? Starting with the first moments, what two or three things will bring relief to most?
First of all, thanks for spelling “throes” correctly. That makes me smile. Can’t tell you how often I see “throws of a flair up.” For a writer, that’s enough to send me into a flare!
Back to the flareup — it’s important to immediately calm yourself with whatever methods work for you (non-food related, please). First and foremost, tell your mind “stop!” Stop the emotions or whatever it is that now surround the flare. Tell yourself that you are now going to reverse the momentum you have and go back toward better times (less pain). Take a walk, especially in nature. Play Clue or Boggle with your kids. Take a bath or read a favorite book. Take a swim. Nourish your body inside and out with healthy food and a healthy environment cleared of clutter, etc.
When you feel your heart rate begin to settle down, tell yourself that the moment of “panic/worry/stress/anxiety” is over. It’s now time for recovery. Breathe deeply. No self-recriminations. No mental should’s or shouldn’ts. Remind yourself that this period of recovery is necessary to heal. Even if it’s just 15 minutes, your body is telling you that it needs to come first.
Later on, it’s very important to analyze what caused the flare. Most often, it’s obvious, but others not-so. If it’s an obvious thing, make an action plan for how you will avoid that in the future. If your flareup was caused by other people, you can’t always avoid them, but you can avoid how they affect you. That’s within your jurisdiction.
If it’s not so obvious, do some detective work. Consider your foods or environment. Look back at what you ate and where you were. I’ve had flareups and then realized that a gardener had fertilized the grass. Or that I’ve eaten a salad in the restaurant, and suspect toxic ingredients in the dressing.
Learning how to avoid flareups is the best solution of all. I know that’s a “Duh Barbie” statement, but it’s true.
What’s next for Sue? Will you write another book? Will you keep blogging at Rebuilding Wellness?
Yes, I plan to keep blogging — in fact that’s what I should be doing now! [NB from Sherrie: You can also catch more of Sue’s more frequent writings at the FibroWHYalgia Facebook page.]
I have many other projects planned and speak locally and do workshops. I have three workshops set up for April and May as well as some blogtalk interviews.
I’m very fortunate to have a wonderful connection and relationship with Cal State Fullerton. I’ll be developing workshops for them which will result in a workbook to go along with FibroWHYalgia. I’d love feedback on what others would like to see in such a workbook. I’m also working on a book of encouragement for those with chronic illness. It’s a short book with affirmations, Bible verses, etc. written to encourage and support people who wish to make positive change in their lives.
You’re totally doing God’s work, you know that, right?
I do remind myself of that daily. It’s not my message, it’s all His. In fact, at my book launch, I had my pastor pray over the book that it will touch softened hearts that are ready to heal. I wanted my book prayed over before it went anywhere! This message is not about me. God is using my experience to help me help others (gee, that sounds Jerry Maguire-ish. Help ME, help YOU!). You know what I mean!
Indeed I do.
Check out this short (1 minute or so) public service announcement on the science behind fibromyalgia from the National Fibromyalgia Association, starring my new fibro-buddy, Sue Ingebretson!
Happily, I can report that Sue will be a featured guest here at the Diaries within the next week or so (depending on how long it takes us to actually set up the interview and me to transcribe that sucker, ’cause I just know I’m going to want to keep Sue on the line for a long, long time…).
We’ll be talking about the fibromyalgia journey, chronic pain recovery, and Sue’s fabulous new book, FibroWHYalgia which is now available at Amazon and other bookstores (affiliate link). (Also, her next movie role and who she’ll be taking to the Oscars … )
After much debate (some of it pretty damned vicious), President Obama finally signed into law the new health care reform legislation that will change the medical landscape for millions of Americans. But what does this controversial and fairly confusing legislative package mean for those of us with chronic pain conditions?
I should start with a warning: I used to be a lawyer. That means: (A) I no longer am a lawyer; (B) nothing herein is legal advice; (C) I may or may not have any special advantages when it comes to deciphering Congress-speak in this matter. So, read as much on this from other reputable sources as you can before you start making plans and decisions based on my interpretations of the reform bill, OK?
That caveat out of the way, let’s look at the bill version that was finally passed and sent to the White House for the President’s signature …
Facts and Figures on Health Care Reform
The numbers vary from source to source, but it looks as if about 32 million Americans will now have a better chance of getting insurance under the new law. Note: that doesn’t read “will have insurance” but “will have a better chance” of becoming insured. That’s a crucial distinction.
The new law mandates coverage for all but a small portion of Americans. Those excluded would be folks who seriously cannot afford it, Native Americans, and those who object to insurance on religious grounds.
2014 is the key year here: that’s when the majority of the provisions become effective. However, until then there are stop-gap provisions that will also impact folks without insurance. Of particular interest to chronic pain patients is the “temporary high-risk pool” provision.
Temporary High-Risk Pool and Pre-existing Conditions
Once the key provisions go into effect in 2014, those with pre-existing conditions (such as fibromyalgia and other chronic pain conditions) can no longer be denied coverage on that basis. Until then, starting 90 days from now, we can tap into the temporary high-risk pool for coverage, with subsidized premiums. Cost-sharing is limited to the figures applicable to the health savings account provisions, or $5,950 per individual and $11,900 per family (2010 figures; these are adjusted periodically).
Health Care Exchanges
The law now provides for state-based non-profit-administered “exchanges” which, if I’m reading this correctly, will allow individuals to buy into plans in groups of 100 or more.
This might be very beneficial for those of us who eke out our livings through self-employment, and for whom historically insurance has been difficult to come by, and prohibitively expensive when available (as compared to the group plans a W-2 worker’s employer can provide).
Overall Cost Restrictions
The bill also puts some caps or limitations on health care expenses. For instance, those with incomes equal to or less than 400% of the federal poverty line will have their out-of-pocket expenses capped at a certain amount.
For more information, including a look at how the new law will impact the 15 million Americans who are unemployed, see this article in Newsweek online.
Edit: Here’s another good review of the provisions — basically same information as in this post but some additional commentary you might find useful.
I SUCK. I haven’t blogged here in … what, millenia? Seems like it. I swear I’m getting back into it, slowly but surely. There’s been … stuff. Going on. And now it’s starting to come to an end. But I’ve abandoned y’all in the meantime, so – yes, I know. I reiterate: I SUCK.
Yep, you read that correctly. How cool is that?
What Is the NFA?
The National Fibromyalgia Association or NFA is a nonprofit group dedicated to helping people with fibromyalgia raise their quality of life through lifestyle changes, medical treatment, and other mechanisms. As a secondary purpose, they’re also into raising awareness of fibromyalgia nationally in the political, social, and media arenas.
FM Aware: A Great Resource for Fibromyalgia Patients
To kickstart that mission, they’ve developed this magazine, FM Aware, that costs about thirty-five bucks per year for a subscription. The magazine, published quarterly, covers all kinds of topics relevant to the fibro community, such as:
- Recent research and developments in understanding the causes and new treatments for fibro;
- Improving quality of life and well-being in fibro patients;
- Understanding and researching all available treatment options in an objective manner;
- Managing symptoms and pain through health care and lifestyle changes;
- And more
So, in order to increase readership and help foster a greater sense of community among fibro patients online, NFA has made the magazine freely available to everyone.
April Blounts, a fibromite for ten years (hey, like me! 2000 was a very … interesting year) is a volunteer with NFA and kindly alerted me to this great news. April stated in her email:
I am excited about the magazine going online for free, because the print version retails for $9.95 an issue. The cost of the magazine helps the NFA continue its mission, but I think that putting it online for free allows so many more people to read it and feel connected to the fibromyalgia community.
It’s great news, indeed, and I’m very grateful to April and the NFA for letting me know about this awesome move.
So, everyone, go read FM Aware! And while you’re at it, take a moment to drop a line to the kind folks at NFA and let them know how much we appreciate them making this amazing resource available to us all.
Euston Arch’ First Virtual Book Tour Proudly Presents Kelly McGonigal and Yoga for Pain Relief
From Annie: As I noted here earlier, Kelly McGonigal is a yoga instructor and Stanford University psychology instructor. Most importantly for our purposes, she’s just published a book titled Yoga for Pain Relief, and as a long-time Tramadol Diaries reader, she wanted to share some of the fruits of her labors with other TD readers in a virtual book tour.
Of course, I grabbed that opportunity! I’ve written about my experiences with yoga before, both here and in articles for other sites, but I really can’t say enough good things about yoga.
I joke that tramadol saved my life, and it did — but the truth is, so did yoga. Without my daily practice, I honestly doubt that I’d be here right now, joyfully writing this introduction in support of Kelly’s “labor of love.” Chronic pain not only means we don’t move our bodies as we want to and should — it also means our psyches are burdened as well. It shouldn’t be a surprise to anyone that chronic pain patients have a high incidence of depression; as many of us say, “Let me stand on your chest for ten years and let’s see how long it takes YOU to get depressed.”
Yoga not only helps relieve the physical pain but it also gives me the tools I need to eliminate the suffering aspect of pain. That, in turn, greatly and positively enhances my quality of life and sense of wellbeing. Yes, I still hurt. The difference is, I’m not letting it define me, nor am I burdened with all those fearful, tense feelings that collectively comprise suffering.
So, without further ado, here’s Kelly with an excerpt from her new book, Yoga for Pain Relief: Simple Practices to Calm Your Mind & Heal Your Chronic Pain (Whole Body Healing) (disclosure: that’s an affiliate link to Amazon – costs you nothing extra, adds a few pennies to my bank account). This excerpt includes instructions for a special practice sequence that might help anyone coping with chronic pain. Also be sure to check out the special bonus guided meditations at the end of the post!
CAUTION: As always, talk to your doctor before starting any new exercise regimen.
Lisa’s Story: Finding Hope Through Yoga
Lisa’s achey fatigue was both mysterious and maddening. When it first showed up during the winter holidays, she thought it was just the flu combined with exhaustion from overdoing things. But as the holidays passed and her fatigue didn’t, her family became alarmed and encouraged her to see a doctor. Her general physician couldn’t give her a definite diagnosis and referred her to a specialist.
The specialist gave her lots of tests but also couldn’t tell Lisa for sure what was causing her exhaustion. Eventually Lisa was diagnosed with chronic fatigue syndrome. By this time, she had taken an extended sick leave from work and was wondering if she would ever be able to return.
Lisa’s physician gave her two prescriptions: an anti-inflammatory drug and an antidepressant. What she wasn’t given was an explanation for her symptoms, or any answers about when or even whether she would recover.
To Lisa, the lack of medical understanding meant lack of hope. Her growing sense of hopelessness was accompanied by greater fatigue. Some days she was so tired, she crawled back into bed less than an hour after waking. The worst part was that even though she was almost always exhausted, she had trouble sleeping. This left her plenty of time alone with her worries and frustrations. She described it as a “wide-awake nightmare.”
Without a clear path for recovery, Lisa needed some way to feel like she was taking care of herself. She wanted to be able to do something every day that felt like an active step toward improving her energy and mood. Lisa didn’t have the strength for exercise, but she found great solace in restorative yoga. It was something she could do every day, knowing that it made her feel better both physically and emotionally.
Lisa kept her yoga mat and props out so that there would be no barrier to practicing. She took great care in choosing inspirational music to play while she practiced, knowing that her favorite songs would lift her spirits. She took seriously the idea that focusing on gratitude, joy, connection, and courage could change the state of her body. She chose one meditation each day to practice in her final restorative pose, imagining the thoughts and sensations of each meditation restoring her strength and well-being.
Lisa thought of her restorative yoga practice as her third daily prescription. It became the one part of her self-care program that consistently made her feel optimistic about her future.
Many types of pain and illness are physically and emotionally overwhelming, especially when they pull you out of your normal life and put you into the role of patient. When pain or illness is this overwhelming, even a few minutes of focusing on health can restore hope and inspire courage in the journey of healing. Whenever you find yourself lowest in spirit, you can always turn to yoga to affirm the part of you that is healthy and whole, despite pain or illness.
A Simple Restorative Yoga Practice: Supported Inversion
Benefits: By gently bringing the legs above the heart, this pose improves circulation and has a healing effect on many systems of the body, including the nervous system, the lymphatic system, and cardiovascular system. It can be done no matter how little energy you have, and can help make “rest” more restful and less stressful.
- A wall, chair, or sofa.
- Optional: a small rolled towel or blanket to support your neck and head
- Optional: an eye pillow or cloth to drape over your eyes.
Instructions: [Annie’s Note: there are three parts to this practice — the physical asana, breathing, and the meditation. Read through the entire description at least twice before attempting. You might also want to consider tape-recording these instructions and playing them back as you go, or having a friend or loved one read through them as you move through the asana, at least the first time you try it.]
- Find yourself seated on the floor near the wall or your chair, with one side of your body facing the wall or chair.
- If you are using extra support for your head and neck, place it about one arm’s length away from the wall or chair, where your head will rest.
- Start to lean back on your arms as you raise your legs onto the support of the wall or chair.
- Let your hips turn as you do so, until you find yourself lying comfortably on your back, with your legs resting on the wall or chair.
- If you are at the wall, make sure that you do not feel a strain behind the knees, in the back of your legs and hips, or in your lower back. If you do, try the pose with hips further away from the wall, to reduce pressure on the legs and back. If you continue to feel any strain in the wall version, you may find the bent-leg version using a chair or sofa much more comfortable.
- Let yourself relax into the support of the pose.
Breathing: Once you are settled in the pose, bring your hands to rest on your belly. Feel the belly rise and fall as you breathe.
Meditation: This pose is in invitation to drop your usual worries and burdens. As you inhale, say silently in your mind, “Let,” and as you exhale, “go.” Yoga is about feeling safe and supported, in both your body and in all areas of your life. You can also repeat silently in your mind, “I am safe” or “I am supported.” If there are other words, images, or memories that make you feel safe and supported — such as loved ones, a favorite place, or a prayer — bring them to mind.
Bonus For Euston Arch Readers! Meditations Just For Chronic Pain Dolls
In addition to the awesome meditation/yoga asana practice Kelly shares above, she’s offering something special just for Tramadol Diaries readers. At Kelly’s website, Yoga For Pain Relief, you can also download or stream a guided meditation that will guide you through practices of breath awareness, body gratitude, and listening to your body. There’s one for befriending your body, and another for listening to your body (both links are to MP3 files).
I’d like to thank Kelly both for writing such an amazing resource for those of us living with chronic pain, and for sharing her words of wisdom with Euston Arch and its readers. I’ve learned a lot, and I hope you have, too. Kelly has an open invitation to stop back by anytime she likes!