Be a Take-Charge Patient: Interview with Martine Ehrenclou, Author & Patient Advocate

Martine Ehrenclou This? This post right here? Will be one of the most important pieces I ever publish on this site.

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!

Cover of The Take-Charge Patient book by Martine Ehrenclou The Martine Ehrenclou/Take-Charge Patient Interview

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:

  1. You empower yourself and increase your self-confidence.
  2. 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.

Why I Added a Tip Jar to the Euston Arch Site

Money in a tip jar

Thank you for your support.

I thought about this long and hard. I really, really did.

When I started the site that preceded this one (The Tramadol Diaries), my intention was to use it to build a community and ultimately write a book about coping with chronic pain. Then the whole “Google hates the ‘T’ word” thing happened, and life happened, and … well, good intentions, road to hell, all that.

See, running a website requires time and money. There’s the cost of the premium theme that controls the way the site looks. There’s the yearly registration of the domain. There’s the monthly hosting costs.

In the beginning, I’d planned to recoup the cost of running this site via affiliate links to Amazon and such.

But there were a couple of problems with that. One was that Amazon pulled its program out of North Carolina, where I now live. But the bigger issue was that I just felt icky writing those posts with affiliate links. The fact that I never made more than five to ten bucks in any year was almost beside the point, but in the end, it was just one more reason to call it quits with that approach. I’ll be removing those links from the old posts over the next few weeks.

This has always been a labor of love for me. Chronic pain has isolated me thoroughly from people I love in the past, and it puts up a wall of separation between all of us and the rest of the world. Others may mean well, but they can’t live inside our skin — they don’t know what it’s like. We do. We can, and must, support each other.

That’s why I love getting email from readers. Every time someone writes me and tells me how hopeless they felt before they found this site, how relieved they felt when they read a few reassuring posts, how this site helped them in some way … my heart just swells. That? Is payment enough.

So why am I putting up a tip jar, then?

That’s a fair question, and like I said, I wrestled with this for a long time.

What pushed me over the line and settled the issue once and for all was this: Y’all know life has been financially difficult for me for the last few years. Chronic pain took a lot away from me, including a well-paying career and a home. I’ve been slowly rebuilding over the last year, but things are still tight.

Being minimally self-employed (I set up websites and help others with marketing their businesses online but due to my condition, can’t work enough hours to make a living wage), money is always an issue. My medical care comes from a community clinic with a sliding fee scale on which I pay the lowest fees. I’ve applied for disability, I’ve applied for Section 8 assistance, and I’ve applied for food stamps.

Life’s hard for all of us, even when things are going well economically. (Which, let’s face it, they aren’t right now, whatever the headlines might say to the contrary.) And for those of us with chronic pain, it’s even harder.

So, back to the story of why I decided to put up the tip jar: My best friend and I talk every day on the phone, and it was during one of those conversations earlier this week that I caught something coming out of my mouth that took me by surprise. We were talking about the thorny issue of having spiritual faith in God when things are so damned bleak-looking. I said this:

It’s like the lottery thing. I mean, the only thing we can say with certainty that if you don’t buy a ticket, you won’t win. But if I really mean what I say, that I’m going to work on letting go of controlling things and have faith in God, then don’t I have to leave room for Him to work in my life?

That question stayed with me all that day. Was I leaving room for something better? Or was I letting my ego seize control of the “how” — how I would make the rent, how I would get the money I need to buy a car (I’ve been without one for eight months), how I would pay the hosting bill — instead of letting that be God’s business?

I don’t want to get too religious here. I completely respect others’ beliefs, or lack thereof. And it doesn’t matter. For “God,” you can substitute “the universe,” “the Flying Spaghetti Monster,” or “fate” or “luck.” There’s the stuff we do and are in control of, and there’s the stuff that happens outside of us but impacts us nonetheless. I can and should focus on the former. I absolutely should do all I can do to support myself and my child. That’s a good thing. But I should also recognize that the latter force is at work, too. And I should leave room for it to do its thing.

Then it hit me: the tip jar is “leaving room.” The tip jar is my way to recognize and honor that force, which I think of as God, and allow it to move and work to my benefit as it will. As He will.

So: I put up the tip jar.

I want to make a few things really crystal clear here:

  1. There is no obligation to donate. None. Zero. I mean that absolutely.
  2. I will do nothing with your email address except send you a thank-you note. Period. I freakin’ hate spam, and I would never sell those addresses to anyone. EVER. Seriously, if there were a way to make donations anonymous so that I wouldn’t even know so-and-so donated, I would. But PayPal doesn’t allow for that, to my knowledge.
  3. If you are moved to donate, you can donate whatever amount is comfortable for you. There are no set amounts, and zero expectations on my part. (See #1 above.)

If you’ve found this site helpful, and if you’re in a position to do so comfortably (and ONLY if), I would be grateful for your donation in any amount to help offset the costs of running this site.

And I truly, truly hope this doesn’t offend anyone. If it does, hey – let me know. Feedback of all types (as long as it’s politely worded) is welcome.




Did Sexism Kill These Two Women?

Be warned: I’m about to make you very, very angry. Possibly enraged.

Still with me? OK, deep breath in, let it out s-l-o-w-l-y … and let’s dive in to this effed-up quagmire of outrage.

Last September, Anna Brown died in a jail cell in Missouri, alone and in agonizing pain. We know this because we have footage from the prison security cameras. We also know that for three days prior to her death, Anna complained of extreme pain in her leg and went to several different hospitals seeking treatment and relief. In each case, she was treated for an underlying ankle sprain and released by providers who said there was nothing more they could do for her. Ultimately, she ended up in St. Mary’s Hospital emergency room, where she refused to leave after once again being dismissed. So the hospital had her arrested for trespass . She was carted off to the local lock-up, where she died later that day.

An autopsy revealed a blood clot had formed in her leg — which undoubtedly caused the extreme leg pain she complained of — and had worked loose and found its way to her lungs, where it killed her.

Both the hospital and the local police department have issued statements disclaiming any responsibility for Anna’s death. The police say there was nothing they could have done — how could they know she had a serious medical problem? The hospital, believe it or not, is saying the same thing :

“Unfortunately, even with appropriate testing using sophisticated technology, blood clots can still be undetected in a small number of cases,” according to a statement released by St. Mary’s Health Center on Thursday. “The sad reality is that emergency departments across the country are often a place of last resort for many people in our society who suffer from complex social problems that become medical issues when they are not addressed. It is unfortunate that it takes a tragic event like this to call attention to a crisis in our midst.”

Anna clearly did have some “complex social problems” — the MSNBC article linked to above recounts a horrible tale of escalating tragedy that started with a tornado and ended in that jail cell last September. But let’s be clear here: Anna didn’t die because she had “complex social problems.” She died because hospital after hospital failed to take her pain complaints seriously and a lethal blood clot went undetected.

And now let’s travel to the other side of the world and meet Elizabeth Howan of New Zealand, who died from undiagnosed colon cancer after complaining of severe abdominal pain for six years . Her family is, understandably, also outraged, just as Anna Brown’s family is. Ultimately, she was told her pain was “all in her head” and was even diagnosed “probably schizophrenic.”

I’ll say it again: colon cancer. No MRI or full body scan was ever performed.

I’ll be the first to admit that we may not know all the facts on either case. But I will state this categorically and without hesitation: I absolutely believe that in both cases, their pain complaints were either ignored or significantly discounted, and I believe that happened quite possibly solely due to their gender. One of them was written off as a schizophrenic. The other was possibly dismissed as some drug-seeking homeless woman and arrested.

In Ms. Brown’s case, the hospital’s hand-washing dismissal of their own culpability is particularly infuriating. Yes, blood clots are hard to diagnose in some cases. But the critical factor here was that the hospital’s employees discounted Brown’s pain complaints; we know that’s true because they had her arrested to get her out of the ER, and had they taken her complaints seriously, that would never have happened.

Now, let’s pretend these same two events happened to men. Would the outcomes be different? I submit they very well may have been, for one simple reason: when it comes to being taken seriously by our medical care providers, the two genders are often treated wildly disparately.

If two people — one male, one female — with the same demographics (age, weight, height, social status, etc.) come into the same ER complaining of pain in the same part of the body, and each rates the pain as “6 out of 10,” the man tends to be viewed as downplaying his pain, while the woman tends to be viewed as exaggerating her pain.

I don’t know if any studies have been done on this phenomenon — I hope somebody looks at it, because I suspect it’s far more rampant than even the anecdotal evidence I hear would suggest.

So, did sexism play a role in these women’s deaths? Would a more prompt response for either have saved their lives? I don’t know – but I know at least Ms. Howan wouldn’t have died viewed by the people who should have been helping her as a schizophrenic, and Ms. Brown wouldn’t have died moaning alone in a jail cell.

And maybe I wouldn’t be so freaking outraged right now.

Have You Checked the Children? Pediatric Chronic Pain More Prevalent Than Previously Thought

Young boy with a headache Bad news, parents: chronic pain in kids turns out to be more prevalent than was previously assumed Worse yet? The numbers of kids reporting chronic pain are increasing.

A recent study was published in the December 2011 journal Pain by Dr. Carl L. von Baeyer of the University of Saskatchewan’s Department of Psychology that looked at several surveys of reported chronic pain in children. (See “Interpreting the high prevalance of pediatric chronic pain revealed in community surveys” abstract.)

Examining the results of over 40 child pain studies from 1991 to the present, the researchers found that girls experience more chronic pain conditions than boys, and as affected children grow older, the pain tends to increase.

The most common kind of pediatric chronic pain? Headaches (23 percent of kids aged 7 to 18), but abdominal, back and muscle pain were also common.

“(R)esults of this review indicate that persistent and recurrent chronic pain is overwhelmingly prevalent in children and adolescents and should be recognized as a major health concern in this population.”

When Did Your Chronic Pain Really Begin?

Officially, I was diagnosed with degenerative disk disease and worsening scoliosis in November 1999, and with fibromyalgia in February 2000. Yet, I remember quite vividly several episodes of pain in my adolescence that felt an awful lot like the fibromyalgia flare-ups I periodically experience now. The deep-seated ache, especially on the tops of my shoulders and in my lower back and hips, is pretty unmistakeable, even 30-odd years later.

At the time, of course, my mother and I were told it was “growing pains.” At 5’10” I’d obviously done quite a bit of growing, but growing up shouldn’t hurt.

I know that now of course … but at the time? It seemed reasonable to a teenager, especially one who spent almost every day in dance class or theater rehearsals.

I didn’t really put it together at the time. It took my late mom’s revelation, four years past diagnosis, that she too had been diagnosed with fibromyalgia to trigger my memories. Thinking about a potential genetic link had my mind wandering over the history of my life with my mom, and her mother as well, looking for clues.

And that’s when the memories came: moments of such deep and bone-crushing fatigue that I could barely get to the bed, moments of intense flu-like pain that wouldn’t let me get out of bed …

Did I have fibromyalgia as a child? I’ll never know for sure. It seems more than possible in hindsight, but short of a time machine, there’s not much available to me now that can confirm it.

So when did your chronic pain really begin? And for the moms and dads out there, are you worried about your kids “inheriting” your condition? Share your experiences below!





Photo credit: Craig Dingle

Does It Hurt to Do Your Hair?

Shocked woman losing hair Adrienne Dellwo, at’s fibro and chronic fatigue site, recently wrote about her frustrations with her hair:

The picture of me on this page (which is badly in need of updating) shows what I call my “too sick to do my hair” hairstyle. As my functionality improved, I changed it to something that takes a little work, but not much. And still, I have a wide selection of hats for days when I’m just not up to styling it. I have a huge problem in the summer, because my forehead sweats excessively when I’m warm (another fibromyalgia symptom) and undoes my do in a hurry.

Do I ever know the feeling . . . and that’s to say nothing of the excess hair loss we fibromyalgia folks sometimes experience.

I’ve been there, done that, gotten the frizzy and thinning mess of tresses to prove it.

Fortunately, there are some alternatives for those bad pain/bad hair days.

Stop Fighting Mother Nature

One of the worst offenders when it comes to hair-related pain is the insistence on fighting our natural textures. Wavy- and curly-haired girls want to go straight. Straight-locked women want waves or curls. And nobody likes frizz.

Talk to your stylist about good haircuts and styles that work with your natural texture and face shape, instead of requiring multiple “products” and sizzling straightening or curling irons.

It might take some time to grow out into a longer length, or a commitment to go much shorter. Be open to the possibilities. After all, it’s just hair — it will grow back.

Treat Your Hair and Scalp Gently

Another pain-inducer is rough treatment: brushing, combing, yanking back into too-tight ponytails.

Ease up on the heavy brushing. Nobody needs the old “100 strokes every day” treatment, certainly not us. Comb your hair only when it’s really wet. And if a ponytail is the best way to get your hair looking presentable without overstressing it or you, then choose the snagless elastic holders over the tangle-creating ones.

Choose Face-Framing Styles

The things we rely on to keep our hair out of our faces — barrettes, clips, hairbands, etc. — can also increase pain, even when they’re used correctly. By all means keep a few on hand for days when scalp pain isn’t a problem, but if you are experiencing tender-scalp moments, invest in a good face-framing cut that won’t require such accessories to look good.

One Word: Scarves

A vast improvement over those headache-causing headbands, a pretty scarf does double-duty. It looks very elegant and does not trigger tender scalp pain. You can use them in any number of ways as hair accessories. Get some ideas right here.

Let Hair Dry Naturally

If you know you’re going to need to put in the time and effort with a heated styling tool, such as a straightening iron or curlers, give your hair and yourself a break by letting your hair dry naturally first.

Simply squeeze out (never rub vigorously!) the water from your hair post-shower with an absorbent towel, gently comb out tangles (use a detangling or leave-in spray conditioner to help with this), create the part, squeeze water out one more time, and go about other tasks or rest until your hair is dry.

When you’re ready, go about styling as usual.

Note: This will probably mean showering earlier than you otherwise would, of course, if you’re getting ready for a particular event.

Invest In a Second Set of Arms

Something I’ve long wanted to try is this hair dryer holder (Amazon non-aff link). Placed on a counter-top, it holds the hair dryer in place, leaving your arms free to style, instead of hold the (increasingly heavy) dryer.

If anyone’s given this a try, please share your experience in the comments!

Shine On

What’s your favorite hair-care tip? Share your tips and tricks below in the comments!

Fibromyalgia Symptoms Worse? Check Your Scales

Image of apple and hamburger on scales

Choose wisely . . .

A recent article, “Obesity Linked to Worse Fibromyalgia Symptoms,” caught my attention.

The article covers the findings of Mayo Clinic researcher Dr. Terry Oh, who discovered a link between obesity and increased severity of fibromyalgia symptoms.

“We see an association between body mass index with symptom severity and quality of life in patients with fibromyalgia,” says study author Terry Oh, M.D., of Mayo Clinic’s Department of Physical Medicine & Rehabilitation. “This was the first study to look at distinct groups of obese patients and determine how weight correlates with levels of symptoms and quality of life.”

Is anyone really surprised by this?

I mean, it might not be “duh”-worthy, but I can’t ignore direct experience.

See, excess weight has plagued me almost all of my adult life. As I struggled post-diagnosis to lose weight, my fibro symptoms did, in fact, get worse and ease off as the numbers on the scale rose and fell, respectively.

And I’m not alone, I know. According to the CDC, which lumps fibromyalgia into arthritis-related conditions, over 60% of adults in the US who’ve been diagnosed with some form of arthritis (including fibromyalgia among other conditions) are overweight or obese. That’s a lot of potential fibromites who are struggling with their weight and, presumably, the increased pain that comes with excess weight.

Of course, many fibro patients cannot exercise aerobically at the level needed to aid weight loss.

Note: I said “aid” — you cannot lose weight with exercise alone. Which is the good news for fibromyalgia dolls — the thing we can’t do isn’t the biggest part of successful weight management, but the thing we can do — i.e., get our eating under control — is key.

So what are we supposed to do about it, then?

Right: eat fewer calories, with more dense nutrition per calorie.

And yes, I know that’s much easier said than done. Hell, I’ve struggled with my own eating for years … sometimes more successfully than others. Lately, I had a weight gain that’s somewhat mysterious to me. I don’t think I ate that much … but yet, the scales don’t lie. To me, that conclusively establishes that it’s far too easy to eat mindlessly, instead of mindfully.

But now I’ve got even more reason to get my own eating under control: if there’s a chance that losing weight — even a little — will ease up these symptoms and the increased pain I’ve experienced since the weight gain?

I’m there.

Who’s with me?


Does Pain Make Us Scared to Go to the Doctor?

So I was speaking with a friend the other day. This is a friend who has recurrent acute pain, not chronic pain, just to be clear. But it’s still relevant to the discussion we started here the other day about how the war on drugs has created this adversarial relationship between doctors and patients.

She’s been trying to get a diagnosis of her pain, which recurs periodically and is pretty severe–severe enough to put her in the bed for several hours when it hits, anyway–for over a year now. After a series of tests revealed lots of little things but no smoking gun, she had to stop the process when her COBRA’d insurance coverage ran out in November. She’ll be covered again in May or June, but until then, she has to carefully manage her access to doctors because of the expense.

So, quite by accident, when she had two root canals in the space of 48 hours and was given tramadol (yep, my old friend) to manage the mouth pain, she found out that the tramadol actually worked on her recurrent acute stomach pain, too. In fact, it’s the only thing that’s ever helped. She’s deathly allergic to morphine and its pure derivatives, so a whole class of pain meds is out of bounds for her. Finding tramadol was for her, as it was for me, a life saver.

Except these pills came from a dentist.

And at the time of our conversation a few days ago, she had experienced two severe bouts of the abdominal pain in a week. And she had exactly four pills left.

She was panicked. That’s why she’d called me. She realized she wasn’t thinking clearly but here’s how she explained what she was thinking:

So, let’s say I go to the doctor. I ask for more tramadol. He says “no.” Because there’s nothing else I can take, he says “take Tylenol” — which we already know doesn’t work for me. And now I’ve got the expense of a doctor visit, no pain relief, and I’ve been labeled a drug seeker.

I get it, and I told her so. Then I suggested she go ahead and make the appointment now, while she had those four pills left, so she could show the doctor she’d carefully rationed the pills and used them only during her flareups. That she was, in fact, not a drug seeker. She agreed that made sense.

This is what it comes down to, dolls. We’re now at the point where we anticipate the suspicion and a lack of medical care.

Doctors, are you listening? We are afraid of you. More specifically, we’ve become afraid to trust you, to seek medical care, for fear that you will jump to unwarranted conclusions.

Now, true, a lot of the responsibility for this falls on us — your patients. And we’re doing what we can to educate ourselves, conquer our fears, and reach out to you.

Are you willing to meet us halfway here?


Dangerous Panic Indeed: Why the Media is To Blame for Prescription Drug Abuse Hysteria

assorted pills of various colors on a blue background UPDATE: There’s another new link at the end of this piece!

Maia Szalavitz is my new best friend.

Writing for Alternet, she lays out a sober, sane argument that the media insanity over prescription drug abuse is to blame for an increasingly adversarial “relationship” between doctors and chronic pain patients that echoes what I’ve been saying here for years. (Also here. And here.)

To sum up what we’ve both gone on record with:

  • Prescription pain medication abuse risk is low. Really, really low. How low? One percent risk of people over thirty with no prior history of drug abuse. For those who aren’t screened for prior abuse problems, the risk increases only slightly, to 3.27%. (That’s according to the government’s own data, by the way.)
  • The vast majority of Oxycontin abusers (by far, the chief devil in the almost-religious hysteria genned up over prescription drug abuse) do not get Oxy through legitimate medical channels. Also, most of them have a prior history of drug abuse. How much is “most”? Eighty percent, according to Maia. (I don’t have specific numbers but that comports with the information I’ve received from law enforcement and addiction counseling providers.)
  • The rate of US citizens addicted to synthetic narcotics like Oxy, Vicodin, percocet, etc. has not risen in ten years. In fact, they’re remained quite steady at a very, very low 0.8%.

Why aren’t we hearing about this? Maia makes a compelling case that it’s about narrative. Simply, the folks who do get addicted to prescription pain meds don’t make compelling “innocent victim” stories.

I think that’s probably true. I think it also has to do with the powerful medical profession lobby, which is (rightfully) appalled and terrified over a growing willingness in law enforcement to prosecute medical professionals over prescription pain meds. They’re scared of losing their licenses — I would be, too — and so they’ve devolved into an adversarial approach to their own patients.

I saw this last year first-hand, in my frustrating experience with my new medical care provider and their in-house pharmacy. (I told that story in three parts — part 1 is here, part 2 here, and part 3 here.) Subsequent to that clusterf*ck, my pain levels increased pretty significantly, and my ability to walk and stand decreased substantially. Over the summer, I had two appointments with that P.A., and at each appointment she asked if I wanted to increase the dosage of tramadol back to 150 mgs twice a day. I said “no.” ( She brought it up, and not in an accusatory way — in a suggestive, “are you sure because I’m OK with it…” way. I said no. I wanted to explore conservative measures for a few more months.)

Well, ultimately, those conservative measures didn’t work, and reluctantly, late last fall, I asked her to increase the dosage.

I didn’t even have to go in that time — she just called it in.

So, in the course of one year, we started with an easy, trusting relationship, immediately regressed to an adversarial one with a whole lot of suspicion, then suddenly back to trustful. And I know, without doubt, I am one of the lucky ones. Many dolls with chronic pain do not even get a chance to improve their relationships with their doctors. It starts off adversarial, it stays adversarial.

I wrote in one of those “This Doll’s Story” posts linked to above that I felt like I was being forced to prove I wasn’t an addict, when the logical, the sensible, the appropriate course of action is to assume I’m not until evidence suggests otherwise.

That’s true of all of us. And this is why we really need to work to educate law enforcement, politicians, and the medical profession about the reality of prescription pain abuse risk. We need to arm ourselves with these statistics and we need to share them, publicly and privately, with anyone and everyone involved in this issue.

Doctors need to lose the pain management contracts — they simply put the patient and doctor in opposing corners and set them both up for that confrontational relationship based on mutual distrust. One possible exception: when there’s objective evidence to suggest the patient is, in fact, misusing prescription drugs … but even then, that piece of paper isn’t going to do a thing to protect the doctor or prevent abuse, because an addict will simply find another way. Yes, the contract arguably gives the doctor legal cover to drop the patient, but they already have that by law. If they’ve done their jobs in keeping good records, nothing else will be required in a court or before the licensing board.

Doctors also need to stop looking at the chronic pain patient with suspicion. We’re not the enemy, folks. We’re just not. Law enforcement intrusions into medical decisions will not stop by clamping down on appropriately assertive treatment of chronic pain. It will only stop when we join forces and educate the police and the prosecutors and the politicians.

And the only way we can do that is to start with statistics, and then speak UP.

UPDATE: There’s another excellent article on how the war on drugs became the war on chronic pain patients over at Huffington Post. Hat tip to reader Shannon from Nip Pain in the Bud for alerting me to it!


Struggling to Find Your New Year Enthusiasm? You’re Not Alone

I rock beginnings.

I really do. I’m not bragging here. It’s just a fact. I have always excelled at the start. The re-do. The reboot. The reinvention. The changing over of the page on the calendar.

Especially at two key times during the year, I feel a natural surge of energy, a burgeoning recommitment to old goals, a surging influx of new ones, and a tidal wave of enthusiasm for them all.

Those two times: late August/early September, and the beginning of a new year in January.

That surge of “whoot!” came on schedule last fall.

But today, the second day of January, a day on which I am traditionally busily planning and plotting out my strategy to rule the world in the coming twelve months, I am feeling nothing but the strong desire to go back to bed.

Am I depressed? I don’t think so. I don’t feel sad, I don’t feel unmotivated. I just feel a keen lack of that usual turbo charge.

Also, my back really hurts and it’s supercold out today, for the first time in weeks, and that always makes my fibro flare up a little bit.

So maybe that’s why I’m tempted to sweep this strange sensation of lack under the rug. To refuse to acknowledge it. To ignore it completely and just wait for it to go away.

But, see, I can’t. I’ve got this whole business thing to run. (Two businesses, actually, since last year I also launched a new blog called Pajama Productivity, aimed at helping creative workers and artists get their groove back and get back to creating stuff regularly, and I still do the whole WordPress/social media, copywriting, & marketing consulting gig digitally based here.)

And these businesses are in dire need of some serious CEO-level planning time and attention.

But since I usually tackle that project with the considerable assistance of that natural surge of energy and enthusiasm, which I now lack, I’m feeling somewhat adrift. The prospect of getting my ass in gear and engaging in that higher-level thinking and the initial push of activity which is all-important, if not critical, to getting a new project off the ground, is just daunting.

I don’t have any hard and fast answers here, so if this sounds painfully familiar to you, I’m truly sorry I can’t tell you exactly what will get you out of the funk we both find ourselves in.

I do have some ideas — that’s all they are, though, just ideas. I’m going to try them this week. I’ll let you know if they work, and how well, in a future post.

Here are the ideas I’ve come up with so far:

  • Better self-care: I’ve been sort of sloughing off on the self-care thing lately. Not sleeping as well or as much as I used to, not doing the daily yoga, skipping the longer warmer showers in favor of the quick in and out. These and a few dozen other little things make my pain manageable and simply make me feel better. So, it stands to reason, if I eliminate these blocks and feel better, maybe my mood and brain will perk up, too.
  • Going back to the purpose and the whys: Every major goal or project has behind it a huge “why” — the reason a change is necessary in our lives. Maybe going back to those whys, reviewing them, making sure they’re really as strong as they once seemed, adding more and better “why”s, getting clarity on my overall purpose in these endeavors — maybe that can trigger a better attitude.
  • Back to basics: The house isn’t a disaster — just a little on the messy side. I’m not eating crap — just a little less well than before. I haven’t made the bed in days. These little things do have an impact on mood and discipline, two things that need an immediate adjustment in my case.
  • Simplifying the List where possible: I started absolutely fresh with a brand-new Planner file (I use Circus Ponies Notebook for keeping track of all my to-dos and projects and goals). I deleted every single one of the 100+ “to-do”s on that list, because they’d been there for months, undone, and the world hadn’t ended in a fiery explosion of apocalyptic fireworks, so I figured I was safe. I have eight things on my list. And I’ve done four of them. EIGHT. And FOUR. This is mildly thrilling, I admit.

That last one — culling my List — produced an immediate sense of relief. And I’m finally starting to feel a little tingle of something that might be a precursor to the return of my usual enthusiasm and energy. I’ve got a long way to go, mind you, and I can’t go too fast or too hard because – duh – that also triggers a fibromyalgia flare-up.

But, hey, it’s a start. And I can get a little enthusiastic about that.