Patient

Is misinformation deadlier than the virus?

Patient
November 8, 2021

Lurking in the shadows, it creeps in.
Spreading itself across the world.
Creeping into all recesses of human civilization,
like a slug oozing slime as it moves slowly and surely.

A microscopic, spikey ball of evil engineered for killing.
Attacking its prey without warning.
Attaching itself, drawing lifeblood for its existence.
A parasite of sorts, devoid of a conscience.

It matters not if victims are young, old, healthy, infirmed, rich, poor.
Existence is at risk and all are fair …

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Type 1 diabetes is no fun

Patient
October 30, 2021

A brown plastic bag sits atop the green dresser in my room. One side has a purple hummingbird flying above the word “Papyrus,” a store at the mall named after the material ancient Egyptians used as a written surface. The other side of the bag features a white hummingbird with red splashes on its wings. A paragraph of small, white writing rests at the bottom of the bag. I don’t …

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The advocate’s sword stands polished and ready

Patient
September 8, 2021

“The weapon of the advocate is the sword of the soldier, not the dagger of the assassin,” according to journalist and writer, Alexander Cockburn.

The sword of the advocate, whether used for oneself or a loved one, may also end up opening doors that can benefit others. My work involves promoting the importance of family involvement in patient advocacy. But on occasion, I have needed to advocate for myself; I hope …

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COVID-19 divides and conquers

Patient
September 7, 2021

On August 25, 2021, the United States achieved two world records: approximately a total of 39 million cases of COVID-19 among our citizenry and approximately 648,000 deaths due to succumbing to COVID. Young, old; male, female; rich, poor — it doesn’t matter. We are all potential victims of this deadly disease.

Our numbers have surpassed the data of countries such as India, Brazil, and China. Haven’t we learned anything in almost …

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Tomgirl and tomboy: Rethinking gender stereotypes

Patient
August 26, 2021

One night my godson seeming anxious came to me and asked if there was such a thing as a “TomGirl”?  He coined a term that addresses so many issues of our time.  Questions about gender stereotypes and the negative idea of the word feminine.  A few years back, based on this incident, I wrote a picture book about a little boy who likes to knit and sew.  It is based …

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Successfully navigating advance directives to choose your best one

Patient
August 24, 2021

As a surrogate consultant, people often ask me for advice on the best advance directive (AD) to cover their medical and end-of-life (EOL) wishes.  Unfortunately, the answer is not that simple.  An AD is a “legally recognized” document usually containing a living will spelling out your preferences and treatment options when you cannot speak for yourself.  It also includes the designation of a health care surrogate/proxy to follow your wishes. …

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That glorious last summer: A patient says no to chemo

Patient
August 14, 2021

It never ceases to amaze me that some people do not realize they have the absolute right to make their own health care choices even if everyone else thinks it’s the wrong choice. Once they recognize that every medical option is theirs to accept or reject, the effect can be liberating.

In the Patient Self-Determination Act of 1990 Act, this right to choose is outlined, including the right to refuse treatment, …

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A message from a patient to health care workers: Always remember your humanity

Patient
August 6, 2021

For those working in the health care profession, life has been a nightmarish existence for the past 18 months. COVID-19, originally billed as an illness no more severe than the flu, has devastated America and most other world countries. Loss of life due to the virus has been astounding, often attacking the most vulnerable of our population. Now, more than 1 1/2 years later, the virus is still in our …

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When records are wrong, patients are at risk

Patient
July 9, 2021

I took a deep breath. The medical assistant who was checking me in for a video appointment was trying my patience. I was trying to explain, once again, that no, I really didn’t have HNSHA due to triosephosphate isomerase deficiency. The rare condition had inexplicably been added to my problem list in my electronic health record, and it was proving impossible to remove.

”The only person who can remove it is the one …

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The triad of health care: patient, nurse, physician

Patient
July 3, 2021

I believe in the power and sanctity of the relationship between nurses, patients, and physicians. A feeling that one is part of a team, part of a triad, whose sole purpose is centered on enhancing the patient’s health. This security empowers a patient to move forward on his journey of health. In recent years, this strong bond has been tested and shaken. Why?

We live in a nation blessed with such …

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When celebrities attack children with food allergies

Patient
May 16, 2021

Recently, I came across two high-profile Twitter accounts sharing a meme insinuating that parents who have children with nut allergies are hesitant to give the coronavirus vaccine to their children. The author of the tweet, Bette Midler, so eloquently says, “Vaccinate, or I’m bringing the Jiffy.”

To date, this tweet is still standing and has been retweeted over 2,600 times with over 19,000 …

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The difficult to diagnose comorbidity that plagues Ehlers-Danlos syndrome patients

Patient
May 14, 2021

Chances are, if you’ve heard of “dysautonomia,” it’s in relation to the buzz surrounding the recently identified post-COVID-19 syndrome. However, dysautonomia is not new. Patients with Ehlers-Danlos syndromes (EDS) have long suffered from this elusive comorbidity, contributing to some of its most disabling symptoms. You may not know it, but it’s likely that you have at least one “difficult” patient in your practice right now who has undiagnosed EDS. Unfortunately, …

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How do we push forward into this new normal?

Patient
May 12, 2021

Days morphed into weeks, into months. It’s now been over a year, and the world is still living in the shadow of COVID. The world has changed; I have changed.

There is a sense of vulnerability now, more so than any time in recent years. Well, maybe the exception would be on September 11, 2001, when two small planes purposefully crashed into the twin towers of the World Trade Center. The …

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A patient’s perspective on genetic testing

Patient
May 4, 2021

I was sitting in a cold hospital room next to my husband, anxiously clutching his hand. The genetic counselor across from us withdrew a piece of paper from a white envelope and placed it on the table. She knew we were anxious to hear the results, so she got right to the point.

“You have tested positive for the gene that causes Huntington’s disease (HD),” she said.

I didn’t say anything right …

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Medical facilities: Please keep your immune-deficient patients safe

Patient
April 21, 2021

“Go have a seat,” the receptionist at the imaging center told me, gesturing to the waiting room. It was a close, poorly ventilated space, and several of the chairs were already occupied. I turned back to the receptionist.

”I have a primary immune deficiency,” I patiently explained. “I spoke to the scheduler about this. She said I could wait somewhere isolated.”

”This is what we have,” the receptionist said indifferently and turned to …

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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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