Friday, July 27, 2018

Pain in the Ass? Or Your Own Best Advocate?

If you know anything about me, you know I've had a lot of experience being a patient. Too much.

As I've gotten older, I've also become more verbal ~ and less hesitant ~ about asking questions and speaking up when I feel I need to. In short, being my own best advocate. Or, a pain in the ass, depending on your point of view.

Such was the case earlier this week when I found myself sitting on a "bed" in the local ER, awaiting test results.

I had called my internist's office to see if I could be seen for some chest pain I'd been experiencing. The nurse told me to go the emergency room.

"I don't have the time or the money to go to the emergency room!"

Yeah, I really said.

After a brief silence, the nurse informed me that the ER was the place to go. There, the staff could draw blood to determine the presence of cardiac enzymes and determine if I had actually suffered an "event" ~ and then treat me as needed.

Sensing I was still hesitant, she closed the deal:

"If you come here and tell us you are having chest pain, we will call 9-1-1."

So, off to the ER I went.

The triage nurse told me I could expect to be there for about six hours,which turned out to be pretty accurate. She started taking my vitals around 2:40PM and I finally left shortly after 9PM.

Preliminary blood tests and X-rays all came back negative, according to the ER PA, who did a good job of keeping me updated.

Then, there was a shift change at 7PM, and my new nurse entered my curtained "room," IV kit in hand.

"Is that an IV?" I asked her.

"Yes," she answered, somewhat cautiously. "You've been marked for admission."

"What???!!"

I told her, none too gently, that all my tests had been negative and I was waiting for a cardiology consult. She thought I'd already seen someone from cardiology. No, I told her. I had not.

After she left, I went to the main desk. The PA who'd been taking care of me was engrossed in conversation with other staff.

"Yes, ma'am. How can I help you?" another nurse asked me.

"I. Need. To. Speak. To. Him.," I said, pointing at the PA.

"Okay, I will let him know."

Moments later, my nurse returned and apologized. I was not being admitted. The PA had had to mark that on my chart to initiate the cardiology consult. One more blood test was needed. If that was also negative, I would probably be discharged. And she would page cardiology to inquire about the delay.

And, as noted above, I was discharged a few hours later with a cardiologist referral and a possible stress test in my near-future.

My Father, My Advocate
This incident reminded me of my spondylolisthesis surgery. More specifically, what happened during my recovery.

My surgeon, Hugo Keim, ordered 24-hour, private nurse care for the first week or so, post-op, but that first night, my nurse was "sharing" patients ~ meaning she was splitting her time between me and another patient who was also in need of 24-hour care.

I was still fuzzy from the anesthesia and floating in a morphine haze, but I did realize that each time she turned me ~ from one side to other ~ she left the call button where I couldn't reach it. And then seemed to disappear for long stretches of time.

The next day when my parents came to visit (back then, parents didn't stay with their hospitalized children), although I have no memory of it, I recounted the previous night's ordeal in graphic detail.

Without a word, my father left the room.

"Where is Dad going?"

"To the nurses' station," my mother said.

I don't know what my father said (although I can imagine it!), but I never saw that nurse again. And that night, I met "Paul," whose kind care I still remember fondly.

So, be a pain in the ass! Speak up! And take good care.

Tuesday, May 10, 2016

Bras and scoliosis

Now there are two words I never thought to put together. Until now.

Thinking back on my Milwaukee Brace years, I wished then that I could forgo a bra. The brace pads pushed the elastic components of the bra further into my skin over my ribs, leaving deep, reddish-pink grooves. However, thanks to my mother's genes, I've always been one of those girls who really needs the support of a bra, so it was just one more discomfort to endure during that time in my life.

Recently, Michaela contacted me about a business idea she is exploring that will somehow involve scoliosis and bras. Intrigued? You can help her out by participating in this brief survey.

Sunday, March 27, 2016

Mobility and mortality

As I celebrate another birthday this month, I find myself wondering what life will be like ~ and how mobile I will be ~ as age and wear and tear affect my spine and joints.

My primary concern is the prospect of being confined to a nursing home and, worse, a wheelchair. Although I will do everything I can to avoid that, nothing will stop the aging process.

This has been a source of anxiety for me, until . . .

Recently my family moved from North Carolina to Illinois and, in an effort to meet people, I joined a book discussion group with our new church. The book selection: Being Mortal. Written by a doctor, it illustrates how physicians are trained to treat, and then treat some more. They are not taught how to help us accept the reality of our own mortality and how to exit this life on our own terms.

I was a little scared to read this book, but I got through it and now I feel empowered by what I've learned. Despite what we have been conditioned to believe, we are in charge of our lives and our medical care. Through the experiences of patients Dr. Gawande has known, readers can consider different scenarios they may face on the journey toward their own mortality.

So now I know that all assisted living and nursing home facilities are not created equal. There are choices to be had and decisions to be made, and I can take steps to ensure my wishes are known and honored. This means asking myself some difficult questions and sharing those answers with my loved ones. It won't be easy, but it needs to be done ~ for me as well as for them.

So if you're looking for a good read, check out Dr. Gawande's Being Mortal. It's not an easy one to get through, but it's important to read it anyway. Trust me.

Friday, June 19, 2015

Puberty in a shell

It was summer in New Jersey and a friend had invited me to her house to go swimming in her family's pool. I told her I would walk there (less than a mile away from my house) and she expressed concern.

"What if you fall? You'll be a like a turtle on its back. 'Help me! Help me!'" she mimicked the infamous line from "The Fly".

I laughed and assured her I'd be fine. And I was.

Another summer, during a family trip to the Florida Keys, I spent some of my "brace-less" time in the sun ~ and fell asleep. The resulting case of sun poisoning made wearing my Milwaukee brace unbearable, so I went without for awhile. I remember feeling vulnerable, sleeping without the brace's support. Or maybe I was feeling guilty, not wearing it as prescribed.

This story reminded me of those instances. It is Hannah's story, seen through her aunt's camera lens. This touching tribute, by photographer Julia Cybularz, chronicles Hannah's scoliosis treatment. The story title is the first reference to "living in a shell" that I can recall ~ a very accurate description. Scroll through the photos of "Breaking the Girl" to see Hannah's journey of strength and courage.

This July will mark 36 years since my last body cast was removed, finally freeing me from my shell.

Tuesday, February 17, 2015

No height gain for me

When, after two and one-half years of treatment with the Milwaukee Brace, Dr. Keim decided that I needed scoliosis surgery, I wondered if I would be taller. Seemed logical to me: curved spine made straight should add a few inches, right?

That was the subject of a recent study at Boston Children's Hospital, published in the National Library Medicine. The conclusion was that, yes, among the 116 patients (average age: 14.8 years), additional height was gained after scoliosis surgery, and some patients continued to grow post-operatively.

In may case, though, I did not gain any additional inches on my pre-surgery 5' 3" frame. But then my surgery was likely more extensive than those patients participating in the study. I was also older (16) and had probably achieved my adult height by that point.

But thanks to the study's authors for confirming my hypothesis lo, those many years ago.

Wednesday, December 17, 2014

Decision in King v. Burwell will affect everyone

It's been awhile since I vented about the state of health care in the U.S. However, as 2014 winds down, I am very concerned about the King v. Burwell case, which will be decided by the Supreme Court in July 2015.

Since the Affordable Care Act was signed by President Obama in 2010, it has been gradually implemented, culminating with the launch of the (albeit flawed) website that enables folks to sign up for affordable health care. Prior to healthcare.gov's rollout, several other components of ACA were put into place, including provisions that allow children to remain on their parents' health insurance plan until age 26, and preventing insurance companies from withholding coverage for people with preexisting conditions.

Republicans have wasted time and energy trying to overturn ACA, and I would argue that they have succeeded in preventing the law's full implementation, since the majority of states (with Republican governors and/or legislatures) have refused to establish a state health care insurance exchange, and almost half have declined millions in federal funding by not expanding Medicaid.

Ironically, the crux of the King v. Burwell case is that federal subsidies should not be given to folks living in states that did not establish state-run insurance exchanges. Well played, GOP.

Despite the political opposition, a recent poll shows that more Americans are supportive of the ACA. But, ACA's funding is on the line with the King v. Burwell case and, depending on how the Supreme Court rules this summer, it could all unravel.

Preexisting medical conditions affect my entire family, so this is personal for me. If ACA goes away, it will have a negative impact on my children and their future health and well-being. All any of us can do is hope and pray that the Supreme Court justices will deliver a commonsense ruling that will keep this important legislation in place for every American.

Wednesday, September 24, 2014

Meet Phoenix

I love hearing from Maria Talks Back readers because that's how I meet people like Phoenix and her mom, Audrey.

A few months ago, six-year-old Phoenix was diagnosed with severe early-onset scoliosis (60-degree C curve).

For the first two weeks after Phoenix's diagnosis, her mother Audrey was "numb." But by the time we met through a mutual friend, Audrey was immersed in her crash course on scoliosis, and preparing Phoenix for her treatment in a Wilmington brace.

By all accounts, Phoenix handled the casting and brace fitting like a
champ and has been responding well to wearing her new brace for 23 hours each day. She is also receiving physical therapy and Cranialsacral Fascial Release.

Cranialsacral Fascial Release is actually two therapies: Craniosacral and Fascial. And, according to Lynn Demarco, Phoenix's therapist, these therapies can work in concert to relieve "blockages in the energy system [and]. . . restore energy flow, alleviate pain, decrease stress and improve overall function."

Reviews on the effectiveness of this holistic approach to healing are mixed, but so far it is working for Phoenix, and that is what matters to Audrey.

Since she had to learn more than she ever wanted to know about scoliosis, Audrey has become an advocate for early detection: "I didn’t think a curvy spine could be such a big deal. Believe me, it’s a big deal. Scoliosis can cause a host of problems to a little one’s development if not taken care of. If you’re reading this and have a child, check their back. Usually the back check happens at the pediatrician or at school, but for Phoenix, she progressed very fast and it happened in-between visits [within] a year and a half’s time. If you are looking at your child’s back and it looks odd, get it checked out."