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."

Sunday, August 3, 2014

A funny thing happened on the way to get my driver's license

This past week (July 31) marked the 35th anniversary since my final body cast (pictured below) was removed.

I still remember how "free" I felt. Finally. I was 17 years old and had a long to-do list of things I had delayed until I was plaster-free, not the least of which was getting my driver's license.

Although I had earned my driver's permit while I was in my cast, I had postponed my on-the-road driver's test because Dr. Keim said I would receive a disabled license if I took the test before the cast came off. He would know about such things, himself having only one sighted eye.

I chose to take my test in Newark because, according to my friends, the DMV folks were more lenient there, and that would greatly increase my chances of passing the test.

So, with me behind the wheel, my dad took me to the Newark DMV one brisk autumn morning before he went to work.

It had been awhile since my father had navigated the congested streets of downtown Newark, but we were doing okay until he told me to make a right. As I completed the turn we had to wait for a solid line of pedestrians to pass through a crosswalk. That's when we simultaneously saw the "No Right Turn" sign ~ and the flashing blue lights in the rear view mirror.

"Stay here!" dad said as he threw open the passenger door. The car windows were closed, but the rear mirrors provided an excellent view: my dad (in his police uniform) facing off with a very irritated Newark cop. Pointing. Gesturing. Arguing. And then, as their voices rose, audio:

"I'm taking my daughter down to get her license," my dad explained.

"Yeah? Well, she's not gonna get her license, if that's the way you taught her to drive!"

And on it went.

Finally my dad said: "Look, I'm on the corner of Northfield and Main Street in West Orange. Go through the red light there and we're even!"

He got back in the car and told me to go.

And, yes, I did pass.

Wednesday, July 2, 2014

Scoliosis Infographic

As a follow-up to the scoliosis chat that took place recently on Facebook, here is a comprehensive infographic about scoliosis:

Wednesday, June 18, 2014

Scoliosis chat

I received an email today that I wanted to pass along.

The Hospital for Special Surgery will be hosting a Facebook chat focused on scoliosis on Tues., June 24, at 5:30 p.m. EST. Dr. Roger Widmann and Dr. Lisa Ipp from HSS will be available to answer questions from the scoliosis community.

Located in New York City, HSS is a world leader in orthopedics, rheumatology and rehabilitation, and is a member of the New York-Presbyterian Healthcare System and an affiliate of Weill Cornell Medical College. The hospital's research division is internationally recognized as a leader in the investigation of musculoskeletal and autoimmune diseases. Visit HSS's Facebook page for further information.

Wednesday, June 11, 2014

Falling

There was something about the stairway in the house on Hazel Avenue. Maybe it was the height or depth, or the way the 70s-era, burnt-orange carpet clung to each step. Whatever it was, those stairs were conducive to falling.

We lost count how many times my mother fell, but thankfully the only casualty was the odd heel snapped off of her fashionable pumps.

And then it was my turn.

Less than two years after my scoliosis surgery and cast removal, I fell down the stairs. I don't know how I lost my footing, but I remember thinking "This CAN'T be happening!" as I tried unsuccessfully to grab the ornate metal railing and stop my descent. My mother rushed in from the kitchen just as I landed and we both started to cry.

On the surface, I was fine. No bruises or pain. But I was paralyzed with fear wondering what might have happened to my spinal fusion and Harrington rod.

About a year later, I needed minor surgery (a misnomer, IMHO; in my experience, there's no such thing) to remove a cyst from my left hand. During my pre-op appointment, the surgeon reviewed my lab work and chest X-ray.

"Everything looks good and, by the way, your X-ray showed that a hook has dislodged from your Harrington rod."

That's just how he said it. Casual. Matter-of-fact. And, yes, of all the surgeons I have encountered in my lifetime, he gets a big, fat F in bedside manner.

"What?!" I exclaimed. "What do you mean, 'dislodged'? Where is it going??" I practically screamed, as visions of a metal hook floating throughout my body swirled in my mind. He assured me that the hook was surrounded by scar tissue and would not be going anywhere.

That was more than 30 years ago and, since then, my infamous hook has been featured on many an X-ray. Numerous medical professionals have gently broached the topic with me, assuming I was unaware of its existence. It has happened so often, in fact, that I usually cut them off with a polite, "Yes, I know, a hook dislodged from my Harrington rod."

But back to the topic of falling.

About a month ago, I tripped and fell in my bedroom. Straight back, landing unceremoniously on my butt. It was another surreal moment of disbelief--"OMG! My back! My hip! My shoulder!"--followed by a crushing fear of possible damage done.

Concern for my hip surpassed all others as I recalled following Dr. Wellman's recommendation for a ceramic joint, instead of steel, because research shows the former is longer-lasting. But that data probably did not take falling into account!

I was frantic with worry, ignoring the bump to my head, and Mark tried to calm me down.

"You're able to walk. You're okay," he said.

Dr. Wellman echoed that reassurance, saying that, as long as I could bear weight on the hip, it was probably fine.

Probably fine.

It has taken this long for the soreness--mostly in my right arm, which apparently absorbed a large percentage of the impact--to subside and I'm finally convinced that all is well.

Here's to a fall-free future!



Friday, May 9, 2014

Bye-Bye, Boo-Bear

It has been four weeks since we said good-bye to Sandy, yet I still expect to see her come into the room. Although it sounds trite to refer to a dog as your loyal companion, that's truly what she was. Always by my side when I needed her ~ and vice versa.

In October 1999, only one month had passed since we had mercifully laid our spaniel-mix Maggie to rest. Mark had taken her passing particularly hard since Maggie was the first dog he'd known from puppyhood til death. He said he wanted to wait awhile before getting another dog, but when he suggested we visit the animal shelter on that bright autumn day, I warned him: "If we go there today, we're getting another dog today."

Enter Sandy.

I can still see that sweet, three-month-old face as I lifted her from the pen at the local ASPCA. Dogs were barking all around her, but she sat quietly, waiting...for me? I immediately knew she had the perfect temperament for a family with children and when I showed her to J, the deal was sealed.

I was working full-time outside of the home then, and we never knew what we'd find after leaving Sandy alone for most of the day. I didn't have the heart to crate her, so we attempted to confine her to the kitchen. One day she was sitting in the adjacent dining room, despite the gate that remained installed in the doorway. "I have NO idea how I got here!" she seemed to say as I stood there, stunned.


Although her indoor manners improved with age, she remained the proverbial escape artist, seizing any opportunity to slip out of our backyard to prowl the neighborhood. But she always came home, eventually.

Mark said Sandy was as tough as nails (one of her nicknames was "Brick-head" because sometimes, when she didn't quite clear a doorway, she'd smack her snout ~ and just kept going), a trait that endured as she aged. Despite arthritis, deafness and various lumps and bumps, she remained alert and mobile with a healthy appetite until the end.

We did our best to give her a good life. I hope she knew that.

RIP Boo-Bear. Until we meet again.



Wednesday, February 19, 2014

Maximized manipulation

I wore a Milwaukee brace for two and one-half years (age 14 to 16) before the decision was made to undergo a second spinal fusion that would correct my scoliosis. If you're at all familiar with pictures of the brace, you know it's hardly inconspicuous. The neck ring, in particular, is clearly visible. And that made it easy for P and me to meet.

It happened during the rush between classes at West Orange High School. Our eyes met and we froze as other students jostled past us. Speechless, we finally continued on our respective paths, fresh with the knowledge that neither of us was alone. Eventually we became friends and learned that our scoliosis treatment was being managed by the same surgeon, Dr. Keim.

Several months later, our common bond was dashed when I saw P at school, brace-less. Her parents were taking her to a chiropractor. "I go twice a week and it doesn't hurt," she told me. I was so jealous! And I pleaded for my parents to take me to a chiropractor, but after doing a little research, my mother nixed the idea.

Over the years, my infatuation with the thought of chiropractic treatment has done a 180. In fact, I have often said that a chiropractor for me would be like taking a Rolls Royce to a Hyundai mechanic. Having said that, I know there are some excellent chiropractors out there providing essential care to their patients. In fact, several of my family members (including my husband, Mark--and, in an ironic twist, my mother) and friends have turned to chiropractors for various ailments and gained positive results. For example, P (whose S-curve was at 6 and 12 degrees) received treatment for three years to prevent her scoliosis from progressing and, as of this writing, is doing very well with no regrets.

But there are also practitioners that claim chiropractic care can cure everything. And that brings me to the point of this post.

Recently, I found myself at an "information session" for a chiropractor in the Maximized Living franchise. One of their doctors had been at a healthful living event at EarthFare, offering free nerve scans, and Mark signed up. After a follow-up appointment and X-rays, he was asked to bring me along to his next visit to ensure I was "on board" with his treatment plan. Mark and I had no idea what to expect, but we hoped to be on our way within an hour so we could go out for coffee afterward.

First, we (there were six of us altogether) heard from the CA (chiropractic assistant)--a patient at the practice--who told us how awesome she felt after receiving treatment. Then the junior chiropractor took over the podium. He began by asking us to list the top four causes of death in the United States. Now, as a freelance writer, I have interviewed numerous cardiovascular surgeons and researchers, and they have all told me the same thing: the number one cause of death in America is cardiovascular disease. But according to the JC, heart disease was number two, followed by cancer (#3) and diabetes (#4). The number one cause of death was a word I'd never heard of (starts with an "I"), a disorder that afflicts those who are taking multiple prescriptions for various chronic disorders. Cue skepticism.

Finally, the chiropractor--Dr. B.--taught us how to read X-rays, using "before" and "after" views of previous patients. He emphasized that the key to a long and healthy life is proper spinal alignment. Then he went on to illustrate how any malady can be cured--or prevented--with spinal manipulation. Even cancer. And at that point, Mark caught my eye and mouthed "I'm sorry."

But the coup de gra for me was the last patient, a teenage girl whose X-rays illustrated the progression of her scoliosis. After explaining that the girl's parents had been advised by their pediatrician to monitor her curve at home and not pursue chiropractic care, Dr. B. dramatically revealed the most recent X-ray showing a noticeable curve to her spine. It achieved the desired effect as the other participants gasped. Meanwhile, I was thinking to myself, I've seen worse. Pressing his advantage, Dr. B. went on to describe--in graphic detail--that the girl had since undergone scoliosis surgery with cages and bolts and all manner of horrible apparatus that were now a part of her body.

O.M.G.

We were dismissed to a private room for the final phase of the evening: Mark's individualized treatment plan--and payment options. I will spare you the financial details (Dr. B. doesn't take insurance). Suffice to say that, after three hours of mangled medical facts (did you know that people with scoliosis have a markedly shorter-than-average life span??), Mark and I were punchy and snarky when the CA came in to discuss financial arrangements. After we got home (it was too late for coffee), I googled "maximized living+reviews" and found several cautionary tales, including this one.

So, the next time you're out and about, if you see someone offering free nerve scans, remember: "forewarned is forearmed."