Category Archives: Pain

Battle for Grace

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It’s already a big spring for books about illness. I’ve written about The Last Best Cure and In Sickness As in Health, and now I’d like to introduce you to Cynthia Toussaint.

In the course of writing about gender and pain for In the Kingdom of the Sick, I interviewed Cynthia Toussaint several times. A former dancer whose life was turned upside down when a ballet injury turned into a serious, debilitating pain condition, Toussaint is the founder of For Grace, a nonprofit for women in pain. Her experiences having her pain dismissed and her suffering ignored, as well as her incredible story of unconditional love, make for a compelling read in Battle for Grace, her new memoir. In fact, Battle for Grace launched on Maria Shriver’s Architects of Change site.

Here is some more official information about Cynthia, as well as Battle for Grace:

“Cynthia Toussaint is the founder and spokesperson of For Grace (www.forgrace.org), an organization that fights to ensure the ethical and equal treatment of all women in pain. She has fostered two California Senate hearings on thunder-treatment of and gender bias toward women in pain and gave testimony at both events. Toussaint has appeared on more than 75 local and national television shows and featured in over 200 news stories, including ABC World News with Diane Sawyer, PBS, Discovery Health, The Learning Channel plus the New York Times and Newsweek, among many others. A recent media highlight was an invitation from Maria Shriver to launch Battle for Grace on her Architects of Change website. Toussaint lives in Los Angeles, CA, with her beloved John…

Toussaint takes readers on an extraordinary 30-year journey where a crippling mystery illness triggered uncontrolled violence that almost destroyed her. The story begins with a minor ballet injury at age 21 that grew into the chronic pain disease, Complex Regional Pain Syndrome. Her pain went undiagnosed for 13 years as doctors told her it was all in her head. Bedridden for a decade, she was unable to speak for five of those years and was often reduced to the violence that attacked both herself and John Garrett, the love of her life. John has remained at her side for 33 years. She lost the career she’d dreamed of as an actor, dancer, singer, the chance to have a child and very nearly John as well…But Cynthia somehow stuck with it, refusing to be a victim. In her battle to survive, she’s taken on the role of activist and aggressively challenges HMOs and pharmaceutical companies that put the unholy dollar ahead of patient care…”

I am grateful for Cynthia’s insights in my own book, and pleased to share the details of her new memoir.

On Holiday Wishes

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Another edition of the ChronicBabe blog carnival will be out soon, and it’s about holiday wishes when you live with chronic illness. Jenni Prokpy asks, “What are you asking Santa for? What do you wish for the people who care for you? What wishes have already been fulfilled this holiday season?”

Where to start?

In so many ways, I have everything I need and want: I will wake up on Christmas morning with a happy, healthy toddler who greets every day with joy.

But that doesn’t make for much of a blog post, does it?

For people struggling with infertility, which is even more difficult and heartbreaking this time of year, I wish for them a path to building the family they dream of that is as smooth and expedient as possible.

For the babies and families spending the holidays in the NICU, I wish for them that they surpass all the odds they face and are soon able go home, and that they have compassionate caregivers and supportive friends and family until that happens.

For people living with chronic pain, I wish for them relief, physically and emotionally, and substantive distractions if relief is not possible.

For patients living with chronic illness, I wish for them a sense of acceptance that does not mean resignation, and a sense of balance that tends to their bodies and still nourishes their minds.

For the people who love, care for, and often live with people with chronic illness, I wish for them that they truly know how appreciative we are of their efforts, and that they give themselves permission to take a break.

For parents caring of sick children in particular, I wish for them the grit to advocate, the strength to defer when necessary, and (some) solace in knowing that what might hurt right now often helps their children long-term.

For the doctors and researchers working on rare diseases, mine and so many others, I wish for them continued ingenuity, persistence, and necessary funding.

And for my daughter, among so many hopes and wishes, I wish for her that she experiences as much joy from life as she brings into it.

Virtual Book Tour: Chocolate & Vicodin

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I am pleased to participate in the virtual book tour for Jennette Fulda’s new book, Chocolate & Vicodin. It is a humorous and insightful look into living with chronic pain and the popular blogger and author’s journey to reclaim her identity as more than a patient with invisible illness. Jennette and I did a Q&A, which I hope you’ll enjoy. Be sure to check out the book’s site and watch her trailer, too!

1. I wrote Life Disrupted because I didn’t feel there were enough resources out there specifically for young adults with chronic illness. What prompted you to write Chocolate and Vicodin? What did you hope to add to the literature on pain and illness?

Initially, my motivations were fairly selfish. I had decided to write the book regardless of whether it sold or not because writing has always helped me understand my life in a way I never can before I’ve started typing on my laptop. Writing about my headache helped me find meaning in an otherwise meaningless experience of endless, pointless pain.

Once I’d finished the book, I realized the narrative arc followed me from the initial appearance of my illness, through denial, anger, depression, binge eating, illicit drug use, yelling at my blog readers and finally to acceptance that my life had changed. Ultimately it’s about learning to move on with my new life instead of waiting for my old life to reappear. I hope readers with chronic illness gain a measure of strength and hope from that, and readers who aren’t sick can understand what people who are chronically ill go through emotionally.

I also hope the story is funny and compelling enough to attract readers who don’t deal with chronic illness and thus increase awareness of invisible diseases. I purposely didn’t try to cram it full of facts and information about headaches and chronic pain, and focused more on the human experience. I think that’s something anyone can relate to if they’ve faced an unwanted challenge in life.

2. Like your memoir, Half-Assed, Chocolate and Vicodin deals with serious issues yet is seriously funny. How important is humor in terms of living with chronic pain or illness? How long did it take you to get to the point where you could view this journey with some humor?

A sense of humor is a great asset for life in general, not to mention when dealing with illness. I think life is 10% what happens to us and 90% how we choose to respond to that. If you’ve got a negative attitude, nothing will ever be good enough to make you happy. If you keep a positive outlook and remember how to laugh at yourself, you’ll be much happier even if things are crappy. I’ve always viewed life with a sense of humor. It seems to be my default setting. I think I was just raised that way. Blame my parents.


3. One of the hardest part of living with pain and/or illness is the isolation it can cause. What advice can you give readers in terms of moving beyond that (perhaps inevitable) stage?

We’re lucky that there are lots of resources and communities available online. Even if you have a rare or unusual illness, like a headache that doesn’t go away, there are other people in the world who have it, too, along with an Internet connection. I’ve gotten lots of emails from other headache sufferers because I’ve blogged about my illness. We’re able to commiserate, compare treatments, and laugh at the weird advice some people give us. If you reach out, it’s likely that someone else will reach back. So, keep reaching out, even if your arm is really, really tired.



4. I know you tried a lot of doctors and a lot of different treatments before you finally experienced some relief. What do you think finally made a difference for you?

I wish there was one magical, miracle cure I could refer to because it would make my answer much shorter. In reality, it’s a combination of many things. After 18 months, my neurologist and I have finally found a mix of medications that’s keeping my headache down to a 1 out of 5 on the pain scale most days. I also stopped drinking two cups of coffee in the mornings, and I limit my caffeine intake in general. I started using real sugar instead of artificial sweeteners, which I found to be scary since I’d already gained so much weight. Surprisingly, it hasn’t caused me to gain any more pounds. I also try to keep a regular sleep schedule because waking up even one hour earlier will give me an awful headache for the rest of the day. It’s my most reliable trigger, but at least I have a medically valid reason to sleep in.


5. Patients with chronic pain often face skepticism or dismissal from doctors who either can’t diagnose or can’t effectively treat/manage their pain. How much of a role do you think gender plays in this? Was it a factor in your journey, do you think? And lastly, what insights do you have for patients still looking for that right fit with a doctor or a diagnosis?

Fortunately, my pain was never met with skepticism. However, I did sometimes feel neglected by my medical professionals and left without guidance. I saw one neurologist to evaluate a venous angioma on my MRI films, and after he told me I was fine he didn’t recommend what I should do or who I should see next. It was like his part in the drama of my life was over and he was off to cash his check at central casting. I had another neurologist who recommended Botox treatment for me and submitted paperwork for approval from my insurance company, and then I never heard back from him again. I’m not sure if he even noticed I never came back.

I have a friend who’s in medical school, so I know that doctors have crazy schedules. They also have to see a certain amount of patients a day or bill a certain amount of treatments a month to stay in business. I think they’re overworked and it makes it difficult to give every patient the high level of care they deserve. That’s not an excuse, just an explanation.

Before my headache, I tended to view doctors as God’s representatives here on earth, wise and infallible. These days I see them as people with good intentions, but still just people. I used to give them all the power in the patient/doctor relationship, but now I see us as equals working on the same problem together as partners. If I don’t like what they’re recommending or feel they’re not listening, I know I can speak up or go elsewhere. The easiest way to give up power is to think you don’t have any. You do have power. Use it.

Thanks, Jennette! Next stop on the tour is This Mama Cooks, so click on over tomorrow for more good conversation.

And speaking of books, don’t forget there is one more day to leave a comment here about a positive food allergy/love story and be eligible to win a copy of Allergic Girl.

On Being Better Patients—The Follow Up

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My last post on how to be better patients to each other stirred up some conversation—turns out (once again) that despite differences in diseases and symptoms, many things unite us, especially when it comes to waiting rooms, hospitals, and emotionally-charged situations.

As a follow-up to that conversation, I want to explore an issue one of my readers brought up in the comments section, something I touched on very briefly in the post—the idea of illness as a competition. “Illness isn’t a competitive sport” is the exact phrase that comes to my mind, and until very recently, I wondered how widespread the phenomenon was. Was it a dirty little secret of life with chronic illness, something that occurred in waiting rooms across the country? Or was it something more unique to the particular doctor’s offices I frequented? Judging from the initial response, I suspect the former is the case.

You know what I’m talking about, right? You’re sitting in your chair, perhaps leafing through a magazine or engaging in idle conversation with other patients in the room. Somehow the conversation around you turns into a bizarre sort of one-up-man-ship, with patients swapping war stories, surgery tales, and escalating degrees of complaints. The tenor has changed from surface-level camaraderie to a competition.

It’s an interesting phenomenon. I’ve never seen it get to the point where there’s almost a fight over whose symptoms are the worst, as others have mentioned, but I have seen it get pretty intense. Most times I ignore it, but sometimes it gets to me and I cannot wait to be called back just so I don’t have to hear it. It’s stressful to sit there and listen to so many things that are wrong. After all, everyone’s got something, or none of us would be there.

My reaction has always been, who would ever want to win the “sick” competition? That just doesn’t seem appealing to me, or worth it, or in any way productive. And I have to believe that no one really does want that title.

Obviously illness can be really isolating, so maybe people are just lonely and need some place to vent. Maybe they’re in a tough phase of acceptance or adjustment and their symptoms are especially overwhelming. Maybe their illness is a huge part of their identity and in the moment, someone else’s condition is somehow a threat to that identity. Who knows. But I don’t believe there’s any maliciousness or mean-spiritedness in it, and I don’t think it’s even an intentional escalation or competition.

And I think it’s just normal human nature to hear something and think, “You think that’s bad, how about X?” I know when I’m at my rheumatologist (which, for whatever reason, is where it happens the most) and listen to the back and forth I sometimes think about someone I know who’s had multiple major (invasive) surgeries and excruciating, degenerating pain and think these people are actually pretty lucky.

And clearly that’s not fair of me. Other people’s pain and illness are still very real and altering even if they don’t seem as severe as someone else’s. (And I say “seem” because really, you never know what someone else life or situation is truly like.)

At the same time, I’ve also felt funny even coughing at my lung specialist’s because I know there are some seriously sick people treated there, people waiting for transplants to save their lives, people who cannot live without constant oxygen, people I know are so much sicker than me. (They’ve never made me feel that way—most don’t even talk, it’s just a self-consciousness I feel).

And that’s not fair either, because this isn’t a competition and no one need apologize for not being as sick.

And I think the reason both those instances aren’t fair is what I will call Rule #7—No one has a market on suffering. Especially when we’re at the doctors, and we’re probably all a little anxious, and no one’s feeling all that well.

Especially when you consider the saying posted over on Hemodynamics:
“Be kind, for everyone you meet is fighting their battle too.”

Whaddya think?

Mid-Week Resources

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Looking to dig into some good chronic illness resources to get you to the weekend? The July Pain-Blog carnival is now up at How To Cope With Pain, and remember, new bloggers are always welcome to contribute their best posts at the end of each month.

Also, Leslie at Getting Closer to Myself has a call for submissions about living with chronic illness as a younger woman. As the author of a new book all about chronic illness in your twenties and thirties, I’m thrilled to see growing attention towards this phenomenon.

Changing the (Chronic) Routine

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No matter who you are or what you do, you have some sort of routine. Whether it’s when you exercise, when you take your morning coffee break, or what you read during your commute, there are certain rituals that prevail and structure our chaotic, multi-tasking days.

Personally, I crave routine and really can’t function without it. I get all antsy and agitated, like I’ve had too many Red Bulls and haven’t worked off any of the energy. Given my propensity for medical mishaps and rapid changes in health status, this dislike of disruption is unfortunate, but I roll with it as best I can. As I’ve written before, it’s impossible to parse out how much of this is part of my inherent personality and how much of it is a response to a lifetime of illness, but at this point, the origin doesn’t really matter.

When you have chronic illness, the notion of routine takes on even more significance, and we each have carefully constructed disease management rituals. For example, I start my day with an early morning chest PT session with my physical therapist—while I’m not exactly excited for a vigorous chest pounding at 6:45, if I make coffee it’s tolerable for both of us—followed by taking my pills and using my inhalers, peak flows, and, if I need it, my neb. Then I get to work.

Of course that’s just an example. I know diabetics who have their early morning blood sugar testing routines down to a science, and arthritics or people with other pain conditions who need to do certain stretches and warm-ups before they can tackle the day. In this context, routine is a good thing, it means we don’t forget to take pills or do our exercises or anything else that needs to be as rote as brushing our teeth or taking a shower. (Again, I really believe many of the universal aspects of living with a chronic condition outweigh disease-specific differences.)

Though I’m somewhat loath to admit it, there is definitely such a thing as too much routine, especially when it comes to nutrition and cooking. I’ve discussed how instrumental my husband was in helping me broaden my culinary horizons when I was first adjusting to eating gluten-free, and we often try new places and new foods.

But lately we’ve gotten into a bit of a cooking rut. There’s only so many nights salad, veg, and something grilled can taste great without tasting repetitive. As a gluten-free, dairy-free eater I am all about the fresh produce and whole foods, and I pack a mean punch with spices, but still. I looked at our grocery list and realized we buy a lot of the same vegetables and fruits every week. How much broccoli can one couple reasonable expect to consume and be satisfied?

I think when you have any sort of condition that restricts your diet, from celiac disease to IBS to Crohn’s, once you’ve experimented and found a “safe” group of foods, it makes sense to operate within that safe zone. (If it ain’t broke…) However, there’s something to be said for lateral variety, new iterations of things we already know are safe.

So when I came across this post from Alicia about Boston Organics, a company that delivers fresh (and often, locally-grown) vegetables and fruits to your door, I got excited. As she posts, the service makes a lot of sense for people with chronic illness who may not always have the energy to do big shops—they do all the heavy lifting! For people with sensitive GI systems who have very specific needs, it’s especially useful—you can choose which items you never want to receive and then select acceptable replacements.

(And for us, the smallest basket costs about what we’d pay for our weekly produce anyway, so financially it made sense).

I was excited by the prospect of a different array of produce each week, and that’s been the biggest benefit so far. Already we’ve done lots of things with kale, learned that overcooked leeks get slimy, and made wonderful cucumber salads, fruit salsas, and other side dishes we wouldn’t have tried otherwise. It keeps our menu planning diverse and our palette challenged, and that’s really important when you live with any kind of dietary restriction—you never want to feel restricted.

We even inspired to make sushi on our own last week, armed with cucumber and green onion from our weekly delivery. (And, of course, safe rice vinegar and gluten-free soy sauce!) It required more time, energy, and money than we typically have to spend but it was really fun and something we’ll definitely do again. Here are a couple of pictures:

Like I said, clearly we need routine to manage chronic illnesses. But it doesn’t hurt to change things up a bit, either. It’s a question of figuring out where we can build in flexibility, that’s all.

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Speaking of changing things up, Loolwa Khazzoom had Sex in the City on the brain the other night (which worked out well for me) and it made her think women with chronic pain deserve their own camera! Check it out here.

In Control…

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I had an interesting conversation with a friend the other day about painkillers and the issue of control—namely, how painkillers rendered her too out of it to make decisions or know what she was saying or doing.

Not exactly the best feeling in the world.

I nodded, her words reminding me of all the times I’ve come out of anesthesia after surgery. For me, those initial waking moments when I can’t focus my eyes, can’t see without my glasses, and can’t make the words swimming in my brain come out of my mouth in any logical way, are the epitome of loss of control.

And, as I may have mentioned before, I am somewhat of a control freak.

But injuries and surgeries aside, the issue of control is obviously so closely linked to living with any kind of chronic illness. Sure there are things we can do every day to manage conditions and there are preventative steps we can take, but when push comes to shove, so much is not up to us: whether we’re born with genetic conditions, whether autoimmune or other diseases sneak up when we’ve been otherwise, whether diseases we’ve done everything to manage progress anyway.

In the past, my quest to impose order on the chaos that was my medical existence pushed me to extremes. I wanted to do everything, to do everything perfectly, and to be in charge of all the details.

Clearly life doesn’t work that way, healthy or sick. It just took me about two decades to figure that out.

But of course, maintaining a sense of control is still a part of daily life. It isn’t as defining a characteristic as it used to be, but it’s there. None of this is breaking news, obviously, but I did take a fresh look at all of this when someone recently made the connection between writing and control.

My whole life I’ve always considered work, in whatever age-appropriate form it took, to be the antidote to medically-induced chaos. Meeting a deadline no matter what condition I was in meant I still exerted authority over illness. Still having responsibilities and roles meant I was something other than just a sick person—I’m sure many of you can relate to that, regardless of disease or profession.

Now that I’m an adult, now that I’m a writer, writing is my work. But it’s also a healthier way of controlling things that goes beyond the fact that it is my livelihood—no matter what state my body is in, no matter if I can’t sit up to type or I am supposed to be somewhere else, I can still write. I can still control a fundamental aspect of who I am.

So in that sense, I’m pretty lucky.

In Control…

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I had an interesting conversation with a friend the other day about painkillers and the issue of control—namely, how painkillers rendered her too out of it to make decisions or know what she was saying or doing.

Not exactly the best feeling in the world.

I nodded, her words reminding me of all the times I’ve come out of anesthesia after surgery. For me, those initial waking moments when I can’t focus my eyes, can’t see without my glasses, and can’t make the words swimming in my brain come out of my mouth in any logical way, are the epitome of loss of control.

And, as I may have mentioned before, I am somewhat of a control freak.

But injuries and surgeries aside, the issue of control is obviously so closely linked to living with any kind of chronic illness. Sure there are things we can do every day to manage conditions and there are preventative steps we can take, but when push comes to shove, so much is not up to us: whether we’re born with genetic conditions, whether autoimmune or other diseases sneak up when we’ve been otherwise, whether diseases we’ve done everything to manage progress anyway.

In the past, my quest to impose order on the chaos that was my medical existence pushed me to extremes. I wanted to do everything, to do everything perfectly, and to be in charge of all the details.

Clearly life doesn’t work that way, healthy or sick. It just took me about two decades to figure that out.

But of course, maintaining a sense of control is still a part of daily life. It isn’t as defining a characteristic as it used to be, but it’s there. None of this is breaking news, obviously, but I did take a fresh look at all of this when someone recently made the connection between writing and control.

My whole life I’ve always considered work, in whatever age-appropriate form it took, to be the antidote to medically-induced chaos. Meeting a deadline no matter what condition I was in meant I still exerted authority over illness. Still having responsibilities and roles meant I was something other than just a sick person—I’m sure many of you can relate to that, regardless of disease or profession.

Now that I’m an adult, now that I’m a writer, writing is my work. But it’s also a healthier way of controlling things that goes beyond the fact that it is my livelihood—no matter what state my body is in, no matter if I can’t sit up to type or I am supposed to be somewhere else, I can still write. I can still control a fundamental aspect of who I am.

So in that sense, I’m pretty lucky.

Chronic Fatigue Syndrome—A Wake-Up Call

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I read “Chronic Fatigue Syndrome No Longer Seen as ‘Yuppie Flu’” in the New York Times with great interest.

Actually, it was more than just passing interest I felt. It was similar to when I read that Anheuser-Busch launched Redbridge, a gluten-free beer: relief. After all, if a mainstream beer company embraced the needs of the gluten-free consumer, didn’t that mean others would soon follow suit?

So when I read that the CDC released studies “that linked the condition to genetic mutations and abnormalities in gene expression involved in key physiological processes,” it buoyed me a bit. When I read that “some cases of the syndrome were caused when an acute infection set off a recurrence of latent infections of Epstein Barr virus and HHV-6, two pathogens that most people are exposed to in childhood,” I was intrigued.

Decades have passed since chronic fatigue was dismissed as “yuppie flu”—decades marked by residual skepticism and dismissal nonetheless—and understanding the biological origins of the condition has always been paramount in allaying these dismissals.

I don’t write about it often, but my personal history with chronic fatigue began when I was in high school and a case of mono felled me. For nineteen months. Nineteen months of fatigue that overwhelmed me (at first, I slept twenty hours a day); of pain in my neck and joints so severe I cried; of fevers and infections and a brain haze so profound I found it hard sometimes to type my name.

Eventually, doctors gave this siege a name: chronic fatigue, and the flare that began my junior year in high school lasted for several years. I know how fortunate I was to have doctors who identified and diagnosed it so quickly; sadly, this is not often the case, even ten years later.

My condition improved somewhat after those first few months, but it definitely changed things. I didn’t have the same stamina; more than that, I didn’t have the same faith or reliance in my own body.

A decade later, its presence still insets itself in my life, though I’ve been lucky in that I haven’t again had a flare like the one that swallowed up four years of my life. When it happens, I don’t always know the source of the deep fatigue, the brain fog that comes over me sometimes that makes my sentences clumsy and my muscles burn and ache: Residual effects of steroids? Not getting enough air? Lingering complications from adrenal insufficiency? Or chronic fatigue?

I tell myself sourcing these moments isn’t important; dealing with them and moving forward with everything I need to do is what counts. And I believe that. But I remember how bad it was when it was really bad, when chronic fatigue was life halting, not merely life altering—and I know there are so many people still in that life-halted state.

Which is why the news in this updated article—particularly given the fractious history that exists with the CDC in relation to chronic fatigue—is so important. Some highlights? Research using strong antiviral medications shows promise, and it’s an avenue that opens up options beyond population-based studies, which some advocates and patients fault.

Click on over to the link above and read the rest—see how far things have come along, and how much work there is to be done.

Chronic Pain: Class and Cost Distinctions

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As I sat icing my hips today—I knew my beloved elliptical machine was bad for the hips, but wasn’t expecting the stationary bike to be so tortuous—I recalled an interesting Time article about chronic pain I read last week.

That chronic pain is both exhaustive in reach and hugely expensive certainly isn’t news. Still, some of the statistics the article highlights are sobering:

–More than one quarter of Americans suffer from chronic pain
–Each year, chronic pain costs us $60 billion in lost productivity
–In 2004, Americans spent a whopping $2.6 billion on OTC pain medications

Even more compelling are the recent finding from the Lancet that explore chronic pain and its class implications. The Time article goes on to report that:

“Americans in households making less than $30,000 a year spend nearly 20% of their lives in moderate to severe pain, compared with less than 8% of people in households earning above $100,000.”

Other points of interest? The difference extends to the nature of pain itself. People on the affluent side of the economic split often experienced pain from activities like exercising; people on the other end of the spectrum experienced pain as a result of the physical labor and repetitive movements intrinsic to blue-collar jobs.

What’s positive here is that with better preventative policies in the workplace some of this pain can be managed. But coupled with another study’s finding that those who live in poorer ZIP codes have less access to pain medication because their local drug stores don’t stock enough of it, the picture isn’t as clean.

Anyway, be sure to click on over and read the whole article–I’ve highlighted what was most interesting to me, but there’s more to it, especially information on gender that isn’t what we usually hear.

Obviously the scope of pain goes far beyond exercise and physically demanding jobs—from migraines to arthritis to a whole host of conditions, there are plenty of reasons people are in pain, miss work, socialize less. I know for me, the tendonitis in my hips is a source of pain less frequently than pain in my lungs or joints from other conditions. Often these sources cut across class and economic boundaries, but until the gap in access to resources closes, a divide remains.

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On a somewhat related note, I was quoted in a USA Today column on spirit-boosting tips when you’re dealing with illness or pain. Check it out–hopefully, some of the patient experience collected there cuts across class and economic boundaries,too.