5 hidden consequences of chronic pain

Patient
March 30, 2021

Chronic pain affects almost every aspect of a person’s life. I know because I live with it every day. Here are five seldom-recognized and, thus, seldom-understood consequences of living with chronic pain.

1. Sleep deprivation

Some people with chronic pain can find a sleeping position that allows their pain to subside enough to fall asleep. I usually can. Unfortunately, something that worked when I turned the lights out can wake me up …

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5 hidden consequences of chronic pain

Doctors and patients continue to search through the overgrown forest of corporate health care

Patient
March 23, 2021

It’s been a rough and difficult year for us. Separation, desperation, depression, illness, and death are scattered among the months that have passed by.  Hope, for the longest time, seemed non-existent. The COVID virus gave the world a “sucker punch,” leveling us all to the ground. Positivity test rates sky-rocketed, death rates at unacceptable levels. The days have been dark.

Faulty political power plays brought havoc upon our country when we …

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Doctors and patients continue to search through the overgrown forest of corporate health care

The ultimate in patient empowerment: advance care planning

Patient
March 9, 2021

Some years ago, my husband and I sat with his mother at her kitchen table and went over advance care planning documents her doctor had given her. She was in her mid-70s then, living independently but managing several chronic health issues.

The documents included a living will, which specified the kind of care she wished to receive – or not receive – if she were unable to …

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The ultimate in patient empowerment: advance care planning

Healer, are you so different from me?

Patient
February 21, 2021

My heart pumps rhythmically, as does yours, and aches when sadness strikes.

I am stressed and discouraged when I feel I have no control over an illness that invades my body.  Is this not true for you as you lay in your bed at night, feeling that “your best was not good enough” to help your patient?

We enter this world and we will leave it someday; our mortality confronts us. Our …

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Healer, are you so different from me?

Who says doctors don’t care?

Patient
February 20, 2021

Yes Virginia, there are still some doctors who truly care for their patients.

On December 13, 1993, my husband Bill was playing golf.  Early in his round, he suffered a massive heart attack.  Bill was 56 years old.  Thanks to the staff and emergency room staff’s quick action, Bill was stabilized by the ER physician.  That same afternoon, Bill suffered a second heart attack, and Dr. Robert Barden performed Bill’s first angioplasty.

To make a …

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Who says doctors don’t care?

The art of medicine: a patient’s perspective

Patient
February 11, 2021

“The practice of medicine is an art, not a trade; a calling, not a business; a calling in which your heart will be exercised equally with your head.”
– Sir William Osler

One of the most sacred and intimate relationships is that which exists between patient and physician. A patient shares feelings and fears as he traverses the path of illness or chronic disease. As roadblocks in health emerge, a patient looks …

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The art of medicine: a patient’s perspective

Building a bond of trust between patient and physician

Patient
January 30, 2021

We live in a world today where there is misinformation in abundant supply. What we see and hear in the media one day seems to be reversed the following day. What to believe, who to believe? Our world appears to be in a state of turmoil, a state of contradictions. Amid all of this, people are struggling to find some sense of peace and balance in their lives.

It is also …

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Building a bond of trust between patient and physician

I am disgusted with our politicians who have used the pandemic as a political tool

Patient
January 12, 2021

There are times when I feel that I am boxed-in by this unrelenting virus, COVID-19. This microscopic entity has put the majority of the world into lockdown, affecting all aspects of human life and social interaction.  The virus does not discriminate due to race, creed, or color. Be you rich or poor, a professional or laborer, you are fair game to be its next victim. It stealthily works its evil …

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I am disgusted with our politicians who have used the pandemic as a political tool

My healer, please guide me on this journey

Patient
January 3, 2021

I walk this dark and winding path between wellness and illness, moving between darkness and light on this journey of life. As I move between well-being and an uneasy state of uncertainty, a roller-coaster of emotions moves over me. I am brought to my knees with doubt, restlessness, discontent, anger, and fear. At times, I feel heavy with the weight of the world upon my shoulders; other moments, I feel …

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My healer, please guide me on this journey

Patients don’t need quick diagnoses. They need accurate ones.

Patient
January 2, 2021

It seemed like an innocuous tweet. It was just a doctor, somewhere on Twitter, declaring that it was important to learn to quickly ascertain if patients were “sick or not sick.” It was sentence; perhaps two. It spoke volumes.

He was not suggesting that doctors needed to learn to quickly assess severity; to triage for treatment priority; to know when to send a patient to a specialist. Nope. It was “sick or not …

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Patients don’t need quick diagnoses. They need accurate ones.

Understanding critical care in the ICU: then and now [PODCAST]

Patient
December 22, 2020
YouTube video

“I write this as a caregiver, patient educator, and clinical researcher.

The coronavirus pandemic has shone a spotlight on intensive care units (ICUs).  Due to the rapid and continued increase in critical illness from COVID-19 infection, discussions about capacity and specialized equipment have become commonplace. Terms such as ventilators, ECMO, PPE, emergency use …

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Understanding critical care in the ICU: then and now [PODCAST]

10 tips for delivering difficult pediatric diagnoses

Patient
December 8, 2020

On August 12, 2013, my five-week-old daughter was diagnosed with cystic fibrosis. I distinctly recall the feeling of “Everything has changed.” I had worked in the field of chronic disease for almost a decade. And yet, it had never occurred to me that this would happen. Other people’s kids might be sick, but not mine. Not my baby.

I remember our first day in the cystic fibrosis clinic like it was …

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10 tips for delivering difficult pediatric diagnoses

An apology to frontline health care workers

Patient
November 24, 2020

Our country seems to be spiraling out of control. The unending political discord post-election continues to divide our citizenry. The Presidential election is over, accept the results, and move on. There are much more serious issues to have our full attention and among them is the war against COVID-19. This deadly contagion has claimed over a quarter of a million lives in the United States and shows no signs of …

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An apology to frontline health care workers

Physicians: Take back the title you have earned through your training

Patient
November 17, 2020

“Customer #4, please step up to the counter. How may I help you today?”  As a patient, have you ever felt that it seemed you were waiting in line at the deli department, listening for your number to be called?  Sorry to say, the practice of medicine has evolved in this direction in the past couple of decades.  Gone are the days when one could enter the physician’s office, and …

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Physicians: Take back the title you have earned through your training

May we all find the peace we search for

Patient
November 2, 2020

It has been a year of change and constants. Shortly after a new year was ushered in, we heard of a virus that was sweeping across China and Europe. We saw the devastation that this virus brought to humanity, people gasping for air in ICUs, no known or reliable means of treatment, lack of medical supplies, and healthcare professionals giving up their lives to save others.  And then COVID landed …

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May we all find the peace we search for

A patient’s COVID-19 reflections

Patient
October 20, 2020

In this age of the coronavirus pandemic, every moment of life takes on new meaning and importance. Decisions must be made based upon facts known, not assumed. Everything requires careful thought and planning, like a trip to the pharmacy for refills of prescriptions or a trip to the local grocery store to pick up needed food supplies. Even a trip to the local park for much-needed exercise requires thought of …

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A patient’s COVID-19 reflections

A patient’s plea: I don’t know who to put my trust in

Patient
September 30, 2020

Do you wake up these days thinking that you’ve been whisked off your feet by some strange force and dropped in some unidentifiable place, similar to what happened to Dorothy and Toto in the Wizard of Oz?  For the two of them, there was a happy ending. The ending of our current dilemma seems to be uncertain.

As a patient with more than one chronic disease in my repertoire,  I find …

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A patient’s plea: I don’t know who to put my trust in

10 challenges faced by those with chronic pain and illness

Patient
September 19, 2020

I’m writing this piece partly to celebrate the release of my new book, How to Be Sick: Your Pocket Companion, and partly, as always, to try and help readers. I thought I would share the challenges that the book covers, adding some comments as I go. Many of the challenges turn out to apply to the restricted lives all of us are leading in light of …

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10 challenges faced by those with chronic pain and illness

Reflecting on the challenges of patient advocacy

Patient
September 9, 2020

The third week of September is Mitochondrial Disease Awareness Week: a time to fundraise, light up buildings in green, and hold events that highlight mitochondrial disease research and awareness.

My family has never heard of mitochondrial disease until 2017, when our newborn daughter, Miriam, tragically died from it at seven weeks old. Our family felt a profound sense of loss and tried out best to participate in awareness and fundraising efforts …

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Reflecting on the challenges of patient advocacy

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