A New Resolution: To Create Healing

Janice Lynch Schuster

For all my years on the planet, 52, there are still times when experience is no teacher—or when futility seems to be my master. Nowhere is this more true than in my annual list of New Year’s resolutions. (It is a relief to know that I am not alone in this one.) Many of us share the idea that with an annual tick-tock-bank, we can fashion ourselves anew by resolving to achieve certain goals.

In some ways, my approach to making resolutions echoes the Lenten period of my Catholic girlhood: in those days, I could give up something for 40 days, and in doing so, would become closer to my faith.  Perhaps that early experience is still the force that leads me to making resolutions that are at once modest and narcissistic. My resolutions tend to contain some combination of activities that, if only I could achieve them, would lead to meaningful change. (more…)

Subscribe to our newsletter

Struggling with Diabetes? You’re Not Alone

Terri Prof Headshot 0412If you know someone with diabetes, you know how much disruption, discomfort and inconvenience it can cause: dietary restrictions to control blood sugar, frequent finger pricks to monitor glucose levels, injections to deliver insulin and the constant fear that your levels will spike or plummet. All of this effort is necessary to manage the ubiquitous disease. Not managing it well or ignoring it could cause a seizure, a coma, or some other truly unpleasant side effects of irregular blood sugar levels.

While the most extreme health issues have been widely known for type 1 diabetes, more Americans are being sucked into sedentary, high caloric, unhealthy lifestyles causing an epidemic of type 2 diabetes. Both can cause stroke, blindness, heart disease, neuropathy (nerve pain), kidney damage and limb amputations and those diagnosed with diabetes have shorter life expectancies.

Bob K. knows all too well the difficulties of living with diabetes.  Diagnosed with type 1 diabetes as a young boy, he is now 90 years old and is the longest living diabetic on record. But he will tell you it has not been easy. (more…)

Subscribe to our newsletter

Passport Stamped for the Land of Pain: Learning to Live in a Foreign Land

Janice Lynch Schuster

The following post originally ran on the Pain Action Alliance to Implement a National Strategy’s (PAINS) website.

For many years, my passport was stamped in the land of the well, but a poor response to oral surgery in 2013 cancelled that document, leaving me in the land of the sick, the suffering, the other. While I was a well-one, I’d hear stories from that other country—and listen as best I could when others told tales of their visits– but I did not know what it truly meant to live there all the time.

Learning to live in another country is hard work. There are unfamiliar customs to understand, a language to learn, awkward situations, foods and beds and places that do not quite feel like home. The currency may not convert.

Once you become a chronic pain patient, as I have, you discover how much of your life is no longer your own. (more…)

Subscribe to our newsletter

How Social Media Helped Me Through My Breast Cancer Treatment

MandiDisruptive Women previously ran this post in November 2013, but given its message felt it was worth running again during our breast cancer awareness series.

Social media opened a world of connections for me when I was a patient undergoing breast cancer treatment. It became a mechanism where I could reach out to say “hi,” to console, or just to yell out into the world when I was angry.

I actually started blogging about my breast cancer treatment because my aunt kept a blog through the course of her treatment (she was usually a few months behind on updating, so I vowed to be a little timelier when it came to writing posts). It was a great method for updating my really large extended family and I found that writing things down that were emotional for me, helped me process the emotions. (more…)

Subscribe to our newsletter

Linking Domestic Violence and Chronic Disease: An Issue Missing from the Headlines

With domestic violence getting attention lately due to the Ray Rice video and the newly crowned Miss America Kira Kazantsev’s domestic violence platform, the Society for Women’s Health Research believes it is important to highlight an important subject missing from the headlines.

There has been radio silence about the acute and chronic health conditions that affect women who suffer from this abusive behavior. Black eyes, bruises and broken bones are all what we expect to hear from victims who experience violence at the hand of a loved one.

There has been little to no attention, however, given to other health conditions, such as arthritis, hypertension, diabetes, high cholesterol and asthma, just to name a few of the afflictions that may develop long after the violence has stopped. In addition to these physical health consequences, there are psychological effects and conditions that women may experience – fear, anxiety and PTSD, all of which may indirectly give rise to other ailments. (more…)

Subscribe to our newsletter

Another Innovator! Kate Rocks!

kate millikenI love it when I find innovators and it’s my pleasure to introduce you another one, Kate Milliken. I never actually met Kate, but I saw her project on the crowdfunding platform Indiegogo and sought her out for this blog.

For those who don’t know, crowdfunding is an opportunity to contribute relatively small amounts of money to creative, energetic, (more…)

Subscribe to our newsletter

The Day I Made Peace with an Errant Organ

c Here’s my theory: few health crises in life are as traumatic as surviving a cardiac event. I developed this theory while I was busy having my own heart attack in the spring of 2008.

For starters, heart attack symptoms often come out of the blue (in fact, almost two-thirds of women who die of coronary heart disease have no previous symptoms. Having a heart attack can feel so unimaginably terrifying that almost all of us try desperately to dismiss or deny cardiac symptoms. And according to a 2013 report published in Global Heart, the journal of the World Heart Federation, women are twice as likely to die within one year even if they do survive a heart attack compared to our male counterparts.

So if – and each of these is still, sadly, a great big fat IF for too many women – we survive the actual cardiac event, and if we are near a hospital that’s able to provide an experienced team of cardiologists/cardiovascular surgeons/cardiac nurses, and if we are correctly diagnosed, and if we receive timely and appropriate treatment, and if the resulting damage to our oxygen-deprived heart muscle is not too severe, we get to finally go home, safe and sound.

And that’s where the real trauma starts.   (more…)

Subscribe to our newsletter

In Observance of Jessie Gruman

jessie-gruman picOn July 14th, 2014 we lost a truly outstanding woman to her battle with a long time illness. Jessie Gruman was the president and founder of the Center for Advancing Health. A true patient advocate, she promoted not only patient engagement but the use of evidence-based medicine to support the adoption of healthy behavior.  In addition to her professional career, Gruman defined herself as a musician, avid reader of poetry and interested in foreign policy, the media and global health. She was a true disruptive (more…)

Subscribe to our newsletter

Who Will Take Care of You at Home if You’re Seriously Ill?

It turns out that the hilarious British spoof on the horrors of the Man-Cold might be truer than we ever imagined. The joke reality here is that when a husband gets sick, his wife is naturally expected to become his doting caregiver, but when a wife gets sick, she may feel distinctly on her own.

A study presented last month at the annual meeting of the Population Association of America actually reported that the risk of divorce among married couples rises when the wife – but not the husband — becomes seriously ill. (more…)

Subscribe to our newsletter

An Interview with a Disruptive Woman: Exploring Chronic Pain Management

Janice Lynch Schuster is no stranger to being disruptive. A writer, mom, and patient, she has explored many topics from breast cancer to caregiving on our blog . Today, she shares with us a glimpse inside her recently published  Health Affairs article “Down The Rabbit Hole: A Chronic Pain Sufferer Navigates The Maze Of Opioid Use,” a personal story about how she manages chronic pain.

Tell us a bit about the article.

The undertreatment of chronic pain is an ongoing challenge for patients and clinicians—made more challenging by a prescription painkiller epidemic that has triggered  heightened barriers to opiod access. Clinicians and (more…)

Subscribe to our newsletter

The Power of Patients and Systems Evolving Together

Amy CaronWhen I’m asked why I left a sought after career in the fashion industry to get a master’s in public health I have an easy reply, I was a health care ‘consumer’ and I was mad. I was reminded about my experience recently when I read new guidance on immunosuppressant therapy in lupus patients that are in remission. Years ago when I found my perfect balance of diet, rest, exercise, and alternative care I had a long period of remission that prompted me to ask my rheumatologist if we could taper the azathioprine. The response was, “Look, take (more…)

Subscribe to our newsletter

From Surviving to Thriving

Wrenn_Headshot (2)Raising mental health awareness typically involves selection of an illness of interest and summarizing a set of staggering and sobering statistics for the purpose of mobilizing corrective action. Depression, schizophrenia, bipolar disorder, and substance abuse top a long list of debilitating psychological and psychiatric conditions that deserve recognition and attention. Treatments for these conditions are diverse and may involve the use of medications, talking therapies, medical procedures, and self-management strategies. The reality is that there are individual and system-level impediments to recovery and health. Many people simply survive their illness, most are focused on elimination of symptoms, and it is easy to lose hope. (more…)

Subscribe to our newsletter

Are We Cowboys or Managers of Our Chronic Conditions?

jessie-gruman picThe idea that I should “manage” my chronic disease has always struck me as optimistic daffiness on the part of those who want me to do this. The word “management” raises images of organizational charts and neat project timelines: diagrams of authority, deference and – dare I say it – compliance by that which is being managed.

This bears no relationship to my experience of trying to live a full, rich life with serious chronic disease, and I have heard the same from many of those I’ve interviewed. My image of having a serious chronic disease is of a cowboy riding a rodeo bull. Take a look. You call that management? No. But it gives you a pretty good idea of what it feels like to have a serious chronic disease. Most of us are just trying not to fall off the damn bull. (more…)

Subscribe to our newsletter

Here’s My Battle…What’s Yours?

“Be kind, for everyone you meet is fighting a hard battle.” -Plato