An excerpt from All Good Things: A Memoir About Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness.
I had permanent black bags under my eyes from not sleeping properly. I never woke up feeling rested. I hit the snooze button three or four times every morning, prolonging the start of each day. One morning, four months after receiving my …
“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 …
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 …
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 …
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. …
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, …
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 …
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 …
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 …
An excerpt from Never Pay the First Bill: And Other Ways to Fight the Health Care System and Win.
The American epidemic of unnecessary medical treatment is one of the reasons your health care costs keep going up. Experts estimate it’s wasting hundreds of billions of dollars a year. That’s not some number that’s detached from you and me. We pay …
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 …
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, …
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 …
An excerpt from About Natalie: A Daughter’s Addiction. A Mother’s Love. Finding Their Way Back to Each Other.
I look around at the pale walls of the emergency room. Yes, we are back here. Not for an overdose, but this time for an abscess so severe from injecting needles into her arms that it will probably need an operation.
I …
An excerpt from Nick’s New Heart: 30 Years and Counting.
In January of 1991, at twenty-two months old, Nick had another heart catheterization. Andy and I had started thinking about the next stage of surgery to finish the heart repair. Just before Nick was discharged, I discussed it briefly with Dr. Kanter.
“Tell me when you would like to do …
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 …
“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 …
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 …
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 …
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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