An excerpt from What Does It Feel Like to Die?: Inspiring New Insights into the Experience of Dying.
People who are diagnosed with a fatal disease sometimes do more than cope. They grow. They repair or strengthen relationships. They find a deeper spirituality or meaning in the life that remains …
A fatal diagnosis doesn’t mean life is finished
As I age, the probability of acquiring yet another health condition seems to, unfortunately, increase. There’s always one test or another that is on my to-do list, be it bloodwork, X-ray, MRI, or maybe a CT scan thrown in for good measure. I comply usually with a sense that it is for the benefit of my health, i.e., to enable my doctors to determine the best mode of treatment for …
Doctors, listen up! You’ll be a patient soon.
For many years after I became chronically ill, I blamed myself for failing to recover my health. I told myself: “You get sick; you get better. It’s as simple as that.” As a result of this stubborn attitude, I refused to set limits, even though it would have been a tremendous help, not only in managing my symptoms but in keeping them from flaring.
Learning to set limitations
I have a background …
If you’re chronically ill, setting limitations can make your symptoms manageable
I was cleaning out the top shelf of my closet — a location where, hypothetically, treasures can be found. I came upon something that was wrapped in a nondescript brown paper bag that smelled oddly of mothballs. I cautiously reached inside and found an heirloom quilt that apparently had been passed down through generations. I had discovered it an estate sale, and now it had finally come to rest in …
The patchwork quilt of my medical care
According to Wikipedia, a livestock guardian dog is a type of pastoral dog bred for the purpose of protecting livestock from predators. If only our doctors had these noble creatures to protect them from the predators of the world, to alert them when those interested in only the “bottom line” entered the halls of healing, our medical practices. Apparently, a “fox is guarding the hen house,” one who is not …
Physicians and patients must work together to improve health care
My experience trying to obtain the drug prescribed by my rheumatologist is a cautionary tale. This is not about whether the doctor ordered it, or how the specialty pharmacy (CVS) must wait for approval from the insurer before filling the prescription, but the fact the patient who resides and waits at the end of the line, me, is treated not as a person in need, but an expense. In my …
A patient’s frustrating prior authorization journey
I was 5 years old on a busy New York City street with my mom, dad, and two sisters. A large man in shabby clothes holding a garbage bag in his hand stood on the corner waiting for the light to change.
My dad reached into his wallet and handed the stranger a $20 bill, patted him on the shoulder, and said, “Have a good day, my man.”
Dad knew everybody — …
A nurse willing to forgive others. And to forgive herself.
My longtime psychiatrist died by suicide.
It still doesn’t seem real. It’s nearly impossible to accept that someone who had the talent and resources to help so many others couldn’t avail himself of the help that he needed.
It’s even harder to accept that I sensed something was wrong and didn’t do anything about it.
I’d known him for years. In the final months of our relationship, the changes in his attitude and …
Death is an inevitable part of the journey of life. We all have experienced its effects: the death of a family member, the death of a friend or those special individuals who we might have barely known but who left an indelible mark upon our consciousness of living.
I will share with you a remembrance of someone who was loved very much by all who knew her and who left the …
Our doctors are feeling the emotional burden of the state of health care
When Hubby isn’t around to act as a sounding board, when I’m not feeling well, I talk to my dog. She sometimes gets a fearful, tearful earful. I think if I could channel her thoughts to Alexa, Amazon’s virtual assistant, our conversation might go something like this:
Me: Alexa, it took seven days of seeing dentists for someone to listen to me.
Alexa: I didn’t know you were a 7th Day Adventist.
Me: No, seven dentists.
Alexa …
A patient imagines a conversation with Alexa
An excerpt from How To Be A Merry Widow – Life after Death for the Older Lady.
You are like an animal cut off from the herd; people are social beings and need to be with others. The very word ‘”solitary” brings fear even to the most hardened criminal. …
“You ever work with vets?” asks the young man sitting across from me in the hospital waiting room.
He’s been sitting there all morning. So have I. Since 5:30 a.m., my father-in-law, 88, has been undergoing surgery to remove a tumor in his lung. The surgeons just sent word that they’ve finished, and my wife and her mother have gone to the post-op room to see him.
Waiting for them to return, …
A veteran tells an unexpected story
I’ve noticed a frightening trend in the latest research on patients taking prescribed opioids: whatever the negative outcomes, researchers attribute them to the opioid medications instead of the underlying pain.
The many detrimental outcomes these studies find are exactly what you’d expect from a person suffering long-term chronic pain. They don’t recognize or calculate into their studies that opioids were prescribed to ease intractable pain.
It’s like stating that …
Blame the pain, not the opioids
I was standing behind my trolley in our local supermarket when, in my wallet, I came across that drawing of a human heart. In the miniature pen-and-ink composition, the heart is suspended between two birds’ wings.
At the bottom is a dateline: Opioid Vigil, October 19, 2012.
Memory is a slippery thing, but I recall the 20-something artist as tall and rangy. At that opioid vigil, he sat behind the exhibit table, …
The value of personal narratives in addiction treatment and integrated care
My husband, who’s had type 2 diabetes for 20 years, had been struggling for a long while to lower his hemoglobin A1C — a number that measures how well he’s managing his blood sugar over time. When he and I finally investigated the issue, it turned out that someone close to him was thwarting his efforts.
This person is an addict. Her drug of choice is sugar — often candy no …
A wife who couldn’t fully accept her spouse’s health problems
Tammy Fox wanted to help after a friend took ill with a rare and difficult-to-diagnose autoimmune disorder that required many trips to the Mayo Clinic.
Although Fox couldn’t do anything medically, she knew there was a way to ease some of the burden of medical bills and costs associated with doctor visits. She turned to the website GoFundMe and set up a site for her friend.
“You’ve got meals; you’ve got hotel …
Patients turn to GoFundMe when money and hope run out
The mud is deep and thick and black. The smoothness of its surface is deceiving, drawing me closer to it with promises of contentment. It lures those who dare to tread upon it into its hidden depths. Hopes are dashed as one struggles for freedom. It is tenacious: Lift one foot upward and the other sinks deeper into Mother Earth. A sense of futility in escaping its grasp erodes the …
I’ve been concerned lately. Here’s why.
In 2001, I got sick with what the doctors assumed was an acute viral infection, but I never recovered. I’m mostly housebound, often bedbound. My diagnosis is the little understood (but much misunderstood) myalgic encephalomyelitis, also known as chronic fatigue syndrome or ME/CFS. I describe it as “the flu without the fever.” This means that fatigue is only one of many symptoms I contend with …
The dilemmas faced by the chronically ill as they age
In a recent article for Pain Medicine News, “4 Steps Every Provider Must Take Before Prescribing an Opioid,” two lawyers detail the voluminous documentation doctors must collect and maintain to protect themselves against all these new anti-opioid rules.
When even so many doctors don’t understand chronic pain, it’s no surprise that lawyers don’t either. They are trying to fit the practice of pain management into a legal framework to defend themselves …
How the war on opioids has harmed some patients
Eye contact is one of the most basic mammalian traits that signals an interaction. Anybody who has a dog or cat at home sees on a daily basis how much animals value eye contact (and with dogs, it signals you’ve lost the battle!). In the case of health care, during frequent emotional exchanges between two human beings, it naturally follows then that simple eye contact has to be at the …
Doctors: Never forget the importance of eye contact
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