Maria Talks Back

Making the Milwaukee brace

2012-01-23T21:23:00.002-05:00

It’s tough being a medical dinosaur.

I will always remember the after-dinner conversation when my brother revealed that scoliosis surgical patients were no longer casted post-op. Less than 10 years had passed since my own surgery in 1978 (I’d worn a body cast for eight months afterward), and I can still recall the feeling of betrayal and envy in response to this news. If only…

Yet, while some things change, others remain remarkably the same.

Recently, I found this video chronicling how the Milwaukee brace is made today. The process bears a striking similarity to how my brace was created more than 35 years ago. One glaring omission “then” was any effort to make the brace visually appealing. Other than that, the process is relatively unchanged.

limping = walking

2011-12-16T11:20:00.004-05:00

\ˈlimp\
"to walk lamely; especially : to walk favoring one leg"

During a recent phone conversation with my father-in-law, Bob, he made the brilliant observation that "walk" is an integral part of the definition for "limp."

"So, limping is still walking," he said.

I never thought of it that way! Thanks, Bob!

Hip replacement…can wait

2011-11-15T15:09:00.002-05:00

“You walk too fast for a cane.”

That’s what Doug told me during my discharge evaluation following my most recent round of PT sessions.

But he confirmed the cane was set at the appropriate length and showed me, with the aid of a mirror, how walking with it takes the pressure off my right hip.

As he breezed through his discharge checklist, Doug noted that my hip scored three points higher for strength ~ woot! Then he lowered the boom: “Flexibility-wise, you’re in a holding pattern, though. Your arthritis is bone-on-bone, so there’s not much to work with.”

Even though I knew that, hearing it was disheartening.

Every PT session starts with a query to rate my pain level, with “10” being the worst pain imaginable, and “1” being pain-free. I’m consistently at five or six.

Lately, as my curiosity about hip replacement surgery has increased, I’ve been quizzing those “in the know” to learn more.

Doug said I would likely do well recovering from hip replacement because a) I’m young (bless him…then again, the hip replacement patients he treats are in the 70+ club), and b) I already exercise.

“When you’re coming in here with a pain rating of five or six every session, you’ve got to consider your quality of life,” Doug said.

My friend, L, had both hips replaced in the early ‘90s and she’s still doing well – effectively defying the 15- to 20-year rule for prosthesis longevity. We had a good conversation about what to expect and one of the things she said resonated:

“People who hesitate and finally have the surgery often wish they’d done it sooner.”

Hmmmm.

So, after Doug’s encouraging words – and that of L – I was starting to think that the time for my hip replacement surgery – or at least a cortisone shot -- was nigh.

“That would be like jumping from step 1 to step 4,” according to Dr. Kabir, my rheumatologist.

She said that cortisone weakens bones, so it should be used sparingly. In addition, each shot is an opportunity to introduce infection.

Instead, we talked about the in-between steps -- including over-the-counter medication and prescription-strength drugs -- that should be explored before a cortisone shot or two. And then we can get serious about hip replacement.

Currently, I take a couple of ibuprofen “as needed” and find it has a residual effect that can last a few days. So, there’s no reason to rush. In the meantime, I’ll be interviewing some of the hip surgeons Dr. Kabir recommends. Sounds like a plan.

Cane cave

2011-10-07T23:31:00.002-04:00

I never thought it would happen, but it did. Today I bought a cane.

More than five years ago, my orthopedist at Barnes-Jewish Hospital in St. Louis mentioned that I would likely need a cane at some point to take pressure off my arthritic right hip.

No way, I thought. Some people might need a cane, but not me. I’ve worked too long and too hard to remain mobile. I will not rely on some stick to get around.

Since then, several doctors have suggested the cane option, and I dismissed each in turn, focusing instead on my daily exercise regimen and the occasional dose of ibuprofen.

This spring, my family visited Washington, DC. As we walked from one site to the next, I tired easily and was always searching for a place to rest. My daughter, J, offered me her arm to lean upon, and I gratefully accepted. But I felt old and – worse -- not able.

When I visited my orthopedist recently, she observed that walking seems to be a “great effort” for me. We talked about a cane and, before I knew it, I was asking her to prescribe one for me.

I have returned to Doug for another round of physical therapy sessions – to treat a muscle spasm in my neck, but also to continue work on my hip and gait.

During my evaluation, Doug noted that I do not bend my right knee when I walk; instead I swing my right leg outward in a half circle – which explains why I keep stubbing my toe and/or cracking my knee on doorways. Now that I’m aware of this, I constantly catch myself and must consciously think to bend that knee as I walk.

Bottom line: I am starting to realize that I’ve been in semi-denial. Exercise is helpful, but it cannot change the fact that there is a hip replacement in my future.

Between now and then, though, there are other options that can bring relief: medication, cortisone and, yes, using a cane.

So, now that fall has arrived, I’m tired of shying away from activities that require a lot of walking. Instead, I will use my new cane as needed to enjoy the State Fair with my family, and accept my friend’s invitation to Raleigh’s downtown ghost walk -- arthritis be damned!

OMG, I'm on 'TV!'

2011-08-24T17:10:00.004-04:00

After much ado, my video advocating for exercise and physical therapy to manage joint pain has debuted on WEGOhealth.tv.

Please have a look, "like" it and let me know what you think!

Never say 'never'

2011-08-11T22:10:00.002-04:00

If you are a regular Maria Talks Back reader, you know that I prefer exercise over medication to manage my joint pain. But, as Mark recently reminded me, sometimes you just need to take a pill.

I recently returned to Dr. K., my rheumatologist, because -- despite extenstive physical therapy -- the stiffness I experience from inactivity in my right knee was not improving.

"This is a good knee," she told me. I was surprised -- and relieved, since I had convinced myself that I would be needing a knee replacement, as well as a hip replacement, in the not-too-distant future.

So, why is my knee pain so bad?

"It's your hip," she said. Apparently, the muscles extending from the hip, downward, wrap around the knee, bringing the pain along with them.

We talked about meds (again) and (again) I expressed my resistance to prescription-strength NASIDs. Dr. K. offered a compromise: two weeks of ibuprofen, to reduce the inflammation, and another script for physical therapy that will focus on strengthening my quadracep muscles. This will, hopefully, address my knee pain.

I must admit, although I prefer to avoid meds, ibuprofen does wonders for me (God bless, Stewart Adams!). And although I prefer to know how I "really" feel -- without medication -- it's also important to be (and stay) flexible and remain open to other options.

That which is left unspoken: infantile scoliosis on the rise

2011-07-17T16:26:00.008-04:00

Once upon a time (Winter 2005), I researched the rising number of infantile scoliosis (IS) cases, and whether there was a link between this and “Back to Sleep,” the campaign initiated in the early 1990s to prevent Sudden Infant Death Syndrome (SIDS).

Joe O’Brien, executive director of the National Scoliosis Foundation, had given me anecdotal evidence -- from parents’ inquiries to the NSF -- that the incidence of IS was increasing. A recent email inquiry to him confirmed that is still the case.

Now, as you might imagine, this is an emotionally-charged issue – and rightly so. As a parent, if I had to choose between preventing my baby’s death and sparing her from developing IS, uh, I choose the former and “Back to Sleep” she would go.

And, indeed, my notes indicate I was unable to find a medical authority willing to go on record to confirm a connection between “Back to Sleep” and the incidence of IS. However, (thanks to Joe) I did find Martha Hawes.

A scoliosis patient herself, Hawes wrote a book in 2003: Scoliosis and the Human Spine: A critical review of clinical approaches to the treatment of spinal deformity in the United States, and a proposal for change.

In an excerpt from her book, Hawes notes that research has found a link between plagiocephaly, IS and “Back to Sleep.” She also shows that, before “Back to Sleep,” the U.S.’s infantile scoliosis rate was practically nonexistent, unlike in Europe:

“The same asymmetric forces that cause the postural molding of the head also cause a similar molding of the child's immature plastic torso, resulting in scoliosis. In the past, babies in England traditionally were placed on their backs ('supine position') to sleep, whereas in the U.S. babies are placed face down ('prone'). In his 1985 review McMaster states that ‘in the last decade, there has been an increasing tendency toward the prone position and because of more frequent central heating the infants are less restricted by blankets. Could this account for the decreased incidence of the condition seen in Edinburgh?’ A similar decrease in infantile scoliosis in association with adoption of the prone sleeping position for babies has been reported to occur in Germany (Mau 1981). Thus, Mau (1981) stated that, 'Following the widespread introduction of the prone-lying position for babies in Germany some ten years ago infantile scoliosis has now become a rare entity, so that further studies have been restricted.' McMaster (1985) recommends that in cases of resolving curves, the babies should be 'laid prone when in their cots, and this may encourage a more speedy resolution.'"

Hawes explains that, as Europe’s rate of IS declined, the U.S.’s rate increased following the advent of “Back to Sleep:”

“…In recent years, in correlation with increased awareness of the dangers of the prone sleeping position and increasing compliance with the supine position there has been a reported decrease in SIDS from 153 deaths per 100,000 live births in 1980 to 64 per 100,000 live births in 1998 (Hauck et al. 2002). No one could argue with such positive results. However, if McMaster and Wynne-Davis are right in their speculation about the relationship between the supine position and infantile scoliosis, this new policy can be predicted to reverse the U.S. : European ratio of infantile scoliosis…”

Although some cases of IS resolve without treatment, others have been documented to progress to severe curves of 70+ degrees. Such extreme curves can twist the rib cage and stress internal organs, and this is when scoliosis can become life-threatening.

Hawes concludes:

“The possibility that an epidemic of a lethal childhood disorder is in progress in our country should be explored by all possible methods. If such research reveals that infantile scoliosis incidence has increased since the 'back to sleep' campaign began in the early 1990s, then education and practical strategies to protect babies from SIDS and infantile scoliosis need to be provided to parents immediately.”

A postscript about treatment
Regardless of age of onset, early detection is key to effective scoliosis treatment. And, since fused vertebrae generally stop growing, it is imperative that nonsurgical treatments for IS be explored. Dr. Min Mehta pioneered the use of plaster casting to treat IS, a method that is still being used to great success.

Good news for scoliosis fusion patients

2011-06-11T22:03:00.010-04:00

Good news from a recent study of scoliosis spinal fusion patients!

According to this new release from the Hospital for Special Surgery in New York City, a small study of 20 scoliosis fusion patients indicates little to no degeneration 10 years post-op.

New instrumentation is credited with allowing "...the spine to be corrected in a much more natural, physiologic way..." This is one of just a few studies that have examined how scoliosis patients fare years after surgery.

While this report is encouraging, 10 years is not long enough to accurately predict what may happen in the long-term, IMHO. Ten years after my scoliosis surgery (with the now-antiquated Harrington rod), I was doing great, too. It has only been within the past few years (almost 30 years post-op) that I have felt the accumulative affects of degeneration and flatback syndrome. But, hopefully, this is the beginning of a trend to track scoliosis fusion patients as they age.

Search: "Milwaukee Brace"

2011-05-19T14:14:00.003-04:00

Although Maria Talks Back is more than two years old, I only recently discovered the “Stats” tab in Blogger that tells me, among other things, what keyword searches lead people to this site.

Interestingly, the keyword phrase most likely to land folks here is “Milwaukee brace.” Similarly, my one and only post on this topic (written on March 17, 2009) has received more than quadruple the page views of any other post!

Clearly, I need to share more about my two and one-half years in the Milwaukee brace. But, in the meantime, perhaps you’ll find pictures of me in the Milwaukee brace of interest (“Milwaukee brace pictures” is the third highest keyword search that directs folks to Maria Talks Back).

You can view these pictures on Maria Talks Back’s Facebook page. And while you’re there, please consider “liking” the fan page. It’s the best way to get notification when a new post goes up. Thanks!

Scoliosis resources to share

2011-04-14T17:10:00.004-04:00

When someone is struggling with a medical challenge, the internet can be a portal to knowledge, support and reassurance.

A simple Google search can yield a plethora of online information about scoliosis. Here are some sites that I recommend:

A Teenager’s Guide on How to Cope with Scoliosis : How I wish a resource like this was available during my scoliosis treatment! Haley has compiled an awesome support group for teens; the site is interactive and features a blog, polls, discussion board and space for visitors to share their stories about scoliosis, as well as useful info and links (including Maria Talks Back!).

National Scoliosis Foundation: Great source of information and resources, as well as an interactive forum to connect with other scoliosis patients.

Scoliosis Research Society: More great info, as well as a physician locator page.

Scoliosis Support: An interactive forum for patients, past and present.

Sound for Scoliosis: A nonprofit, endorsed by the National Scoliosis Foundation, that sponsors an annual fundraiser in support of scoliosis research; lots of useful links.

If you have a useful link to share about scoliosis, please let me know.

Being your own best advocate

2011-04-02T23:03:00.003-04:00

Both my children were born as I snoozed under general anesthesia ~ a necessity dictated by my spinal fusions. Shortly after the decision to take J by emergency C-section, the anesthesiologist explained that an epidural would be difficult to administer, since I was unable to arch my back so the needle could be inserted in the right spot. Further, he said even if he could get the needle in, there was a risk of long-term damage to my spine.

“If you’re not having any problems with your back, I wouldn’t recommend it,” he told me.

My OB-GYN –- the one doctor in the practice that I did not trust (of course he was the one on duty when my water broke!) -– arrogantly offered to “get the needle in there.” In the end, the decision was mine, and I opted to trade the sound of my baby’s first cries for continued spinal health.

As R’s birth approached (he was a planned C-section), I contacted my orthopedist to find out if there were any anesthetic alternatives – other than an epidural -- to general anesthesia for a C-section? However, my orthopedist’s receptionist just didn’t get it. We went around and again, with her not only claiming ignorance as to why I should be calling, but also inferring that perhaps pregnancy had rendered me an idiot!

By the fifth “I don’t understand what you’re asking,” I snapped:

“And I don’t understand how you can work in an orthopedist’s office and NOT understand the nature of my question! Let me speak to the office manager.” A brief conversation later, and my doctor was on the phone, telling me what I needed to know.

These scenarios drive home the point: When it comes to your health, you must advocate for yourself. Here’s how:

Make a list: Before your appointment, write down the questions and concerns you want to discuss with your doctor.

Be honest: Your doctor can’t help you if you don’t tell the truth. Be upfront about your diet, lifestyle and any other health-related information.

Be assertive: Your appointment is your time with the doctor. Do not allow yourself to be rushed. Refer to your list and make sure you get all the information you need.

Bring a friend: If you don’t feel comfortable or confident that you can advocate for yourself, ask a trusted friend or family member to come along to ensure your questions and concerns are addressed.

Remember: When it comes to your health, it’s all about you. So, speak up and take good care.

Searching for choice where there is none

2011-03-04T15:55:00.010-05:00

I have been grossly remiss in posting an update about my family’s unemployment saga, so please bear with me as I bring you up-to-speed since this post .

Mark was hired as an IT analyst for a consulting company in mid-August 2010. Although the consulting company (surprisingly) had excellent benefits (reasonably priced, quality health care and paid time off, among other perks), we were living quarter-to-quarter (and sometimes month-to-month) wondering whether his position would continue to be funded by the on-site client.

In December, Mark was recruited by another consulting company to return to his passion – web analytics. The salary was higher, but the cost of health care benefits negated that (more on this in a moment). However, this new position was funded through the end of 2011 -- finally ensuring some semblance (albeit limited) of job security – so Mark accepted. Such is life in a job market where contract jobs are the norm, instead of the exception. (No, the recession is not over!)

But, back to the health care issue.

Throughout our life together, Mark and I have weighed more than a few job offers and, all things being equal, the decision always hinges on the health care plan – its quality (co-pays, deductibles, physicians’ network, etc.) and its cost.

With this new position, when we calculated family coverage for medical, dental and vision, the annual bill totaled about $22,000.

After I picked my jaw up from the floor, I embarked on a quest (a futile one, I suspected) to find an alternative health insurance choice that would offer quality and affordability for our family.

Right out of the gate, we knew Mark’s health issues would render him uninsurable outside of an employer-sponsored plan. This was confirmed by several insurance brokers I met during my search. In addition, J and I both have pre-existing conditions (if you are a Maria Talks Back reader, you are familiar with mine), so that was an additional factor to consider.

I was advised to apply for Blue Cross and Blue Shield’s well-advertised Blue Advantage plan, despite knowing that Mark would be denied outright. Those in-the-know said we could insure Mark through his employer and then compare the cost of Blue Advantage versus the employer’s plan for the kids and me. These same knowledgeable folks also said that BCBS was the most likely insurer to accept us since it is “more lenient” with pre-existing conditions.

When the much-awaited decision from BCBS arrived, only R qualified for BCBS’s “preferred” rate of $165/month. My monthly premium came in at $980 and J’s was $545 – and this was just for medical coverage.

Plan B: Since Mark was denied outright and J and I were “up-rated,” we were eligible to apply for Inclusive Health, a program in North Carolina that provides health care coverage to people “…who do not have access to an employer health plan and face higher premiums due to a pre-existing medical condition.” Inclusive Health’s rates were a bit lower ($694/mo for me; $353 for J). However, none of our doctors were in-network and there was a cap on how much the plan would pay out.

In the end, our choice was no choice at all. We are going to pay $22,000/year for health care coverage.

That decision made, a new wrinkle emerged.

The effective date of coverage for the new insurance is the first of the month, following 60 calendar days of employment. However, due to unforeseen circumstances, Mark’s start date changed from Jan. 31 (which would have initiated medical coverage on April 1), to Feb. 2 (which will start coverage on May 1). Therefore, by the space of two days, we will exceed the magical, mystical 63-day window that all health insurance companies use before subjecting you to their dreaded pre-existing conditions restrictions. In laymen’s terms, if we are uninsured for more than 63 days, the new insurer will refuse to pay for any claims that relate to health issues for which we have already received treatment during the first year of coverage. This basically means that we would pay for health insurance, but could not use it.

So, now we’re electing COBRA -- at $1,440/mo (just for medical) – to avoid the pre-existing conditions trap. Will we get our money’s worth for that coverage? Not likely. But, again, we have no choice.

Are you seeing a pattern here?

Walter Cronkite once said, “America's health care system is neither healthy, caring, nor a system.”

True ‘dat!

And yet, Americans accept the rules that health insurers set, jumping through their flaming hoops without question. I liken it to an abusive relationship where the abused doesn’t know that a better life is possible, and continues to suffer.

Health care reform may not be the perfect solution, but it’s a start. The alternative is to keep things as they are – and that choice is unacceptable.

Still the one

2011-02-14T00:01:00.002-05:00

February 1983 --

Mark’s ship, the USS Forrestal, had recently arrived at the Philadelphia Shipyard for extensive renovations. After two years of prolonged absences, we were now a two-hour car ride apart, and planned to see each other every weekend he was not on duty.

Valentine’s Day weekend was the first such opportunity, but Mother Nature had other plans as a blizzard arrived on Friday, crippling the East Coast from Virginia to New England. Regardless, Mark traveled by train, bus and – eventually -- his own two feet, to get to his parents’ house in Irvington, NJ. But he didn’t have a car to drive to West Orange, so the rest was up to me.

The storm was gone by Saturday morning, and the sun shone brightly. Roads were slushy but passable. As Dad and Anthony shoveled the driveway, I anxiously waited for this final barrier between me and my Valentine to be removed.

Belatedly, Anthony paused with a puzzled frown. “Wait a minute, Dad! It’s Saturday. Why are we doing this?”

“Because your sister’s in love!” my Dad said with wry exasperation. Shaking their heads in unison, the scrape of shovel-removing-snow resumed and, before long, I was on my way.

I don’t recall the restaurant where we ate dinner that night, but I do remember Mark double-parking the car en route to dash into a store. He returned with a perfume bottle filled with pink carnations. I still have the bottle – with its heart-shaped stopper -- on my dresser.

Back then, I had no idea that our love would continue to blossom and deepen as we have shared the trials and triumphs of our life together. The song, Still the One by Orleans, sums it up nicely.

We’re still having fun, and you’re still the one.

Happy Valentine’s Day!

Paging Dr. Mary

2011-01-28T20:54:00.004-05:00

It never ceases to amaze me – how the simplest, seemingly effortless exercise can make such a dramatic improvement in my flexibility, muscle strength and, yes, quality of life.

When I started seeing Doug in August for my hip , I never imagined I could feel this good and, more importantly, be in control of my body.

During the past five months, he has discharged me three times – once for my right hip, a second time for tendonitis in my left shoulder and finally, yesterday, for my right knee.

Doug’s combination of targeted massage and an exercise program designed specifically for my multitude of issues has yielded tremendous results.

Yet, sometimes, a simple suggestion from a good friend can also be effective.

You may have read about my friend (and twisted sister), Mary , in previous posts. Although we are both scoliosis patients, we are as unique in our respective skeletal muscular issues as our DNA. But that doesn’t stop us from comparing medical notes.

Recently, Mary told me how she has strengthened her knee by using it. She ascends stairs without aid of the handrail, and also does knee lifts while sitting on the edge of her bed -- simple stuff that made me realize I’d been “coddling” my own knee.

The proof came just one week after I incorporated these changes into my day. I noticed an improvement in strength and flexibility, not only in the knee but also my hip. Then, when Doug tested my hip strength he noted it was “much better.”

As he discharged me yesterday, Doug said he had a feeling he’d be seeing me again. “But let’s make it a good, long while from now,” he joked. Armed with his email address and Mary’s advice, I’m off to a good start.

Dreaded first impressions

2010-12-30T22:49:00.004-05:00

The holidays are traditionally a time for reflection. For better or worse, I tend to focus on my spinal health, gauging my progress -- or lack thereof -- from one year to the next.

I’ve heard that, as you get older, you start to care less about what others think about you. But, for some reason, I seem to be going in reverse with regard to my physical appearance and its inevitable influence on people’s first impressions of me.

During my years of back braces and body casts, I enjoyed staring down those who dared to gape at me, often giggling with delight when I turned the tables and made them feel uncomfortable.

Then, I was dealing with morbid curiosity – and outright rudeness. But now a greater challenge looms – kind concern.

As my flat-back syndrome has progressed, I have become increasingly self-conscious – and defensive – of the kindness of strangers and their concern for my well-being. I have reached the point where I can recognize that slight frown and quizzical expression before the question about my assumed pain can be asked. “No, I’m fine,” I mutter with a smile and a head shake. “Nothing to see here. Move along. Back to your lives, citizens!”

This year, as the arthritis in my hip has further altered my gait, I have convinced myself that these physical “differences” will prevent me from making a positive impression on prospective clients and colleagues ~ anything to avoid networking! Worse, I worry that, without a carefree spring in my step, people will not look beyond my “old” appearance to discover all that I have to offer as an experienced writer and communications professional.

Recently, I shared my concerns with my friend, D. Like me, D is a scoliosis patient so she understood – more than most – where I’m coming from.

“You’re not alone. Everyone has issues, something they’re uncomfortable about, so don’t let that stop you,” she urged.

She’s right, of course. I believe everyone has a story to tell, and adversity provides some of the best material.

So, in the New Year I resolve to venture out from behind my desk and seek some face time with new friends and prospects.

May you successfully keep your resolutions and enjoy good health, peace and happiness in 2011.

Featured resource

2010-11-29T20:35:00.002-05:00

In August, I wrote about a scam email I'd received from the International Blogging Recognition Council (IBRC). The email claimed Maria Talks Back had been deemed a "Recognized blog" and offered me a badge to publicize my award -- for a fee. I passed.

Today, another email arrived announcing that MTB is listed as a featured resource for www.onlineenglishdegree.com:

"As a website dedicated to help those consider a career in english, we only provide the best information available. Whether it's a resource that explores different writing styles, or provides inspiration for your next novel, we provide them for those seeking to obtain this information. This is why we've featured your blog, as it is one of the best to teach our readers."

The badge now located in the upper-right corner was free, so I think this one is for real.

Happy Thanksgiving!

2010-11-25T16:35:00.001-05:00

Holidays are a time for reflection. As I look around the dinner table today, I’m remembering Thanksgivings past at my grandparents’ house, surrounded by my boisterous, extended family.

Things are quieter this year, but no less thankful. Mark and I have faced many challenges, including his extended unemployment and several health issues.

We’ve come through, still intact and stronger for the storms we’ve weathered. For that, and all my blessings, I am profoundly thankful.

Thank you for reading my blog. May you and yours savor your holiday feast – and each other’s company – and find joy and appreciation in all of your blessings today and every day.

RIP, Grandma

2010-11-10T19:22:00.023-05:00

As he was leaving my engagement party, my grandfather turned to me and said, "My last wish now is to dance at your wedding!" He didn't make it.

Now, almost 27 years later, Grandma has joined him in heaven. When Grandpa met her at the pearly gates, I think one of the first things he said was, "Mary, I owe you a dance!"

Grandma would have been 100-years-old on Nov. 26, 2010. The last 15+ years of her life were spent in a nursing home as dementia gradually claimed her mind and body. But that's not how I will remember my fiercely independent grandmother.

I always considered Grandma to be somewhat of a feminist long before the term was defined. A product of the Depression, she quit school after receiving an elementary-level education so she could work to help support her family.

Shortly after she and Grandpa became engaged, Grandma's fiery spirit sparked an argument that almost changed the course of our family's history. As the story goes, she wanted to go dancing, but Grandpa did not.

"Well, I'm going without you!" Grandma said.

"Oh no, you won't!" Grandpa replied.

"Oh yes, I will!"

"Then, give me that ring back!"

Grandma complied and went on with her evening. The incident postponed their nuptials, but they (obviously) later reconciled.

After they married, Grandma continued to work full-time as a seamstress, eventually becoming a forelady at Sherman's sewing factory in Orange, NJ. She made most of her own clothes, always in the latest styles. She prided herself on being a salaried employee throughout her career, while Grandpa had "only" worked on commission as a salesman. She was thrifty and disciplined about saving money, yet she treated herself to a weekly hair appointment at "the beauty parlor." When I was old enough, Grandma shared her passion for sewing and crocheting (she made beautiful afghans) with me, although I never mastered them the way she did. She also encouraged me to patronize her "girl" to have my hair done, often pressing money into my hand to fund my visit.

I have cozy memories of Saturday nights at Grandma's where Anthony and I were treated to pan-fried lamb chops, Kool-Aid (something my mother refused to buy!), and staying up past bedtime to watch Mary Tyler Moore.

During my recovery from spondylolisthesis surgery, my parents gave me one of Dad's police whistles to summon them from the second floor, since I was confined to bed in the dining room. One afternoon, Dad was upstairs asleep after working the midnight shift. I don't remember what I needed; only that I kept blowing the whistle with all of my breath and he didn't respond. Panicked, I called Grandma thinking something had happened to Dad. "I'm sure he's alright, but I'll be right there," she assured me. Minutes later, I heard her coming through the back door after speed-walking (she didn't drive) up our street -- one of the longest, steepest hills in West Orange. After checking on me, she charged up to my parents' bedroom and brought my sleepy, bewildered father to my bedside to confirm all was well.

Together with Grandpa, Grandma was the focal point of my extended family. She brought us together every Sunday for dinner -- a meal that always included amazingly moist meatballs. And, afterwards, as I watched from the corner stool in the kitchen, Grandma and her sister, Rose, would good-naturedly argue about who would do the dishes, their cackling laughter reverbertaing off the walls and tin ceiling.

I feel so blessed to have had Grandma in my life and I'm comforted knowing that she is finally at peace. When I think of her now, I can't help but smile at the image of her and Grandpa, dancing again among the stars.

Sound for Scoliosis

2010-10-13T14:21:00.003-04:00

Giving help and hope to children and families with scoliosis. That’s the mission of Sound for Scoliosis, a nonprofit organization that uses the power and allure of music to raise awareness and funds for the National Scoliosis Foundation.

Sound for Scoliosis’s second annual concert event will take place Fri., Nov. 5, through Sun., Nov. 7, at various venues located primarily in the downtown Scranton, PA area.

During The Grand Finale on Sun., Nov. 7, NSF President Joe O’Brien will read Emily’s story. If you're a regular Maria Talks Back reader, you know all about Emily and her scoliosis saga. Her mom, Suzette, has given me permission to reprint her remarks here as an update -- in case you can’t make it to Scranton next month:

“My name is Suzette Robinson Schrump. I am 46 years young. I am mother, advocate and staunch supporter of my beautiful little girl named Emily, now age 11. In 2005 at age 5, Emily was diagnosed with scoliosis by her pediatrician. In fact, the curve 'appeared' so bad we (Emily's daddy and myself) were given no medical options. UNC Chapel Hill was THE place chosen for our daughter's care.

"For the next 4 years we drove back and forth to the hospital every four months in hopes that we would never hear the words we came to fear the most. 'It's time to start bracing.' In fact, when her 'S' curve was actually MRI'ed (under anesthesia) Emily was also diagnosed with a spinal syrinx. So between orthopedics, neurosurgery and urology, we remained on edge. We determined that four years began to feel like a lifetime.

"June 5th, 2009, our hearts sank, nausea overcame us, as the surgeon gave us the 'news.' Before the brace, it had become commonplace to just wait and worry; now it was here. The brace was coming whether we liked it or not. Our lives had changed forever. Adding insult to injury, our insurance company, United Healthcare, claimed we had went to an out-of-network brace provider (even though we had a written prescription to go to a specific orthotist) and decided to deny all of the claims. Appeals came and went, and denials were the outcome. UHC sent us to a 'provider' of their choice, and the provider simply told me (in writing) that he could not make the brace Emily needed, and that he didn't know why we were given his name in the first place.

"Long story short, we met and befriended Katherine Southard aka Miss North Carolina 2009 at the 4th of July event in 2009 (divine intervention). She put us in contact with a freelance writer, Maria, who is also a scoliosis patient, and had awesome contacts in Raleigh, NC. Maria hooked us up with a radio broadcast station, which we spoke on about our insurance debacle, and BAM! the claim was paid.

"Maria then landed two separate newspaper features about Emily and Miss North Carolina, all in hopes of raising awareness for scoliosis. Katherine came to Emily's school and spoke to the entire student body about scoliosis and her spinal fusion. Emily interacted with Katherine by actually showing the kids how she puts her brace on. The kids were amazed. Emily became a Rock Star.

"Between the three of us adults, we have come together to do everything possible to help people understand scoliosis, and to get the public school system to restart school screenings at a young age. If we can help one child, just one, then it is worth it.

"Emily is on her third brace. She is holding her own. Her curves have not progressed. We are homeschooling her this year because the middle school transition was a task Emily was not willing to take on. We allowed her to make the choice. We are not giving up. We are going to continue to battle the 'system.'

"The Governor of North Carolina recently rejected a proposal put before her as the month of June becoming Scoliosis Awareness month for our state. A shame given the fact that so many other states actually have a month chosen for scoliosis. So the battle continues.....”

You can follow Sound for Scoliosis on Facebook to learn more about the work it is doing on behalf of scoliosis patients.

PT magic

2010-09-25T17:06:00.003-04:00

So far, so good. Doug, my new physical therapist, wrote that I am “progressing nicely” in my patient file yesterday -- my sixth appointment with him, post-spasm.

I’d been on medication for two weeks by the time Doug and I had our initial consultation and evaluation. Although I was pain-free -- for the first time since I can’t remember -- Doug said the offending muscle was still tight, something he set to correct with massage.

“I don’t believe in ultrasound. I’d much rather get my hands on you and work the muscles,” he said. And work them he did, very effectively. After my second visit, I successfully stopped taking Mobic, the anti-inflammatory drug.

During the past month, Doug has reviewed my home exercises, and gradually added others. If a new exercise targeted the same area as an old one, I adopted the newer version.

Massages focused in and around my right hip at each appointment until the muscles loosened to Doug’s satisfaction. By my fourth visit, I felt great. But, I didn’t know how much to credit Doug’s massages and the new exercises, since I was still on Amrix. And although I hated taking the muscle relaxant, I was afraid not to.

“Let’s stop the Amrix the night before your next appointment,” Doug suggested. “Then, if you’re in pain that morning, we can take care of it.”

Now, I’m coming up on one week, drug-free. No spasms. In fact, I feel pretty good! I still have some stiffness in the morning, but it’s nothing compared to the low-back pain I had accepted as my “new normal” within the past year.

My posture and gait have improved, too, if only my muscles would remember that. It’s strange how the body adjusts to chronic pain and discomfort. For awhile, I’ve been aware that my stride resembled a modified waddle -- like I was negotiating tires in an obstacle course – to accommodate my arthritic hip. With Doug’s help, I now feel more flexible and able to walk normally, something I need to consciously remind my muscles, lest I start quacking!

The next challenge is…[drum roll]…yard work. I have avoided doing anything remotely strenuous to prevent a recurring spasm, but Doug wants me to take the plunge. “I’d rather you go about your normal business so we can address any problems, rather than your calling me in pain after I’ve discharged you,” he said.

So, sometime between now and late next week, I’ll be donning my gloves to break up the weed "kegger" that has been taking over my garden. Wish me luck!

Out of control

2010-08-31T16:51:00.009-04:00

“I feel good…na-na-na-na-na-na-na…didn’t know if I would…”

One week ago today, a roundtrip walk from my bed to the bathroom triggered a muscle spasm in my right hip that stole my breath, stopped me in my tracks and scared the crap out of Mark – and me.

Except for the morning pain I had before my spondylolisthesis surgery, this was the worst! I’m not sure how I got back to bed, but (after waving my poor husband off) I did make it there on my own. It was 2AM. I gratefully swallowed the naproxen Mark brought to me and went back to sleep.

I tend to gauge the severity of my back pain each day by my range of motion and the ability to perform routine tasks. So, when I got up at 5:15AM, I was ready to determine this spasm’s place on the pain continuum.

The naproxen had taken the edge off, and I was able to get dressed and go upstairs. Although I managed to get through most of my daily isometric exercises, for the first time ever, I opted to stay off the treadmill.

That’s when reality sunk in: the spasm was in control, not me. Being unable to control your body is an awful feeling; one I work to avoid every day. But on this day, as I dejectedly shuffled to my office and lowered myself into the computer chair, I felt like I had failed.

Years ago, a physical therapist explained that back pain is often at its worst first thing in the morning. This may seem counterintuitive, since you would (theoretically) be rested after a night’s sleep. However, while the body is horizontal, fluid in the spine’s vertebrae collects in tiny pools, and it is that accumulated fluid that can cause morning back pain in many people. Once you get up and start moving, the fluid drains and the pain usually dissipates.

That has always been the case for me, even with this – the mother of all muscle spasms. And, after about 30 minutes of sitting upright, I was able to go downstairs (albeit gingerly) and get on with my day.

Given the debilitating nature of the spasm that morning, I was surprised to be mobile and self-sufficient throughout the day, but I did not let that lull me into a false sense of recovery. No, the spasm was still there...lurking...waiting to strike again.

That night, I went to orthopedic urgent care.

In my experience (which is, unfortunately, extensive), orthopedic surgeons are as elusive as rock stars, relegating the mundane chore of treating non-surgical patients to their PAs. I can count on one hand the number of knowledgeable, caring PAs I have encountered in my life. The guy I saw last week was not one of them.

“You have an ugly back!” he announced as he breezed into the exam room after viewing my X-ray films. Clearly, he had checked his bedside manner at the door.

“Really? I think my back is beautiful. What did the X-rays show?"

“Oh, just a lot of arthritis, bone spurs and stuff. Lots of wear and tear, but nothing to worry about.”

“Is there anything on the X-rays I should know about?”

“No, nothing to worry about. Just A LOT of wear and tear.”

Okaaay…

“What do you take for your arthritis?” he asked.

“An occasional ibuprofen, but usually nothing,” I said.

“Why?”

“Uh, because I don’t like taking pills.”

After diagnosing me with a muscle spasm (really?), the PA prescribed anti-inflammatory and muscle relaxant medication, and wrote a script for physical therapy.

Then, he gave me samples of two muscle relaxants to try. The first (Skelaxin) lasts six to eight hours; the second (Amrix ) works for 24 hours. I quickly determined that I needed a muscle relaxant working full-force when I get out of bed in the morning, so Amrix was the winner.

Now, one week later, I am essentially pain-free –- something I haven’t been in a long time -- but I hate the dry mouth and drowsiness caused by the drugs, not to mention the scary warnings against long-term use of both Amrix and Mobic.

So, my first question for the physical therapist next week will be,

“How can I continue to feel like this, without meds?”

I’ll let you know what he says.

Scam alert: International Blogging Recognition Council

2010-08-06T15:32:00.004-04:00

Earlier this week, I opened my email to find this missive:

"During the month of July, the International Blogging Recognition Council (IBRC) had the pleasure of reviewing your blog Maria Talks Back. Your blog was referred to IBRC through our Refer-A-Blog program. 'The unemployment truth ~ can you handle it?' was the topic that the Council reviewed. Based on the review, the Council has recommended that your blog receive IBRC’s designation of 'Recognized Blog.' IBRC reserves this honor to those blogs that effectively connects with the audience and promotes the sharing of ideas and experiences.

"We invite you to visit our website to learn more about IBRC and our “Recognized Blog” award. Congratulation on your accomplishment.

Sarah L. Tolten
Review Committee Chair
International Blogging Recognition Council"

I must admit, I was flattered -- until I went to the website in search of a "badge" that would designate my blog as "recognized." It was available to me -- for a one-time fee of $45.

After conferring with fellow writers and bloggers, I've confirmed that this is a scam. As one colleague put it, "Awards you have to pay for aren't worth having. There's a big difference between paying for the award and paying an entry fee in a legitimate awards competition."

So, I am using the power of my pen to spread the word and, hopefully, hasten a swift demise to the IBRC.

The unemployment truth ~ can you handle it?

2010-07-14T18:18:00.018-04:00

This recent YouTube video satirizes the games the federal government may be playing to cast a positive spin on current unemployment figures.

Since my husband, Mark, was laid off in January, we’ve become reluctant contestants in a whirlwind of other games, compliments of Corporate America:

- the “job-description-for-that-position-is-a-moving-target-because-we-don’t-know-what-we-want” shuffle,

- the “you’re-a-great-fit-but-we’re-putting-that-position-on-hold-for-now” waiting game,

and the ever-unpopular

- “we-want-to-find-one-person-with-the-skill-set-of-three-who-is-willing-to-work-for-peanuts” challenge

These games are the unreported reality behind the unemployment numbers. The economic climate has tilted the scales disproportionately in the employer’s favor, and corporations are taking full advantage -- at the expense of people’s lives and livelihoods.

Bottom line: businesses (small and large) are reluctant to “pull the trigger” and make a hiring decision. And, while the unemployed needed jobs yesterday, employers are taking their sweet time. As our friend, MF, put it, “Instead of ‘settling’ for someone who meets eight out of 10 criteria, they keep looking for someone who meets all 10,” he said. “So they continue to search for the left-handed brain surgeon – because the previous guy was left-handed!”

If nothing else, this adventure has reaped a rich crop of surreal scenarios for Mark and other job-hunting friends:

- multiple interviews (the record, so far, is 10)

- being told “you’re the one” only to have the position pulled – or filled by someone else

- unwanted membership in the 50-50 Club (companies reluctant to hire anyone older than 50, and unwilling to pay more than $50,000)

- companies offering contract positions instead of regular jobs with benefits

- a growing list of industries that are going “off-shore” for less-qualified (but cheaper) talent

- zero follow-up or feedback from prospective employers

and, most disturbing,

- the sense that being unemployed is an automatic disqualifier.

There is a growing disconnect between the employed and the unemployed. Nationally, lifelines like the COBRA subsidy and emergency extensions for unemployment benefits have faded away. Now, as the November elections approach, speculation and political posturing have consigned the people behind the unemployment statistics to the role of political football.

Something’s gotta give.

Until then, Mark and I will push forward, and try to maintain that delicate balance between hopefulness and raising our hopes too high.

Catch him if you can

2010-06-26T15:30:00.003-04:00

In the wake of Father’s Day – and Dad’s 79th birthday – it has come to my attention that I inadvertently omitted a few of my father’s idiosyncrasies in my previous post, BOGOs, freebies and squirrels.

The first is somewhat of a confession, since its evidence is prevalent throughout my house. Simply stated, my father is a thief.

This is, of course, in direct contrast to his 38-year career as a police officer. Although, something tells me if he had observed a senior citizen grazing the food bins at Fresh Market, or smuggling pocketfuls of napkins and sugar packets out of McDonald’s on his beat, he would have turned a blind eye, believing (as he apparently does now) that the old guy was entitled.

And you may agree. However, just like any addiction, Dad’s pilfering has escalated.

Several years ago, a corporation purchased the country club and affiliated hotel/restaurant in Mom and Dad’s retirement community. Subsequently, membership fees increased and members’ privileges decreased.

Soon afterward, I started to receive bath towels by the bag-full, and enough ketchup, mayonnaise and Dijon mustard mini bottles to open my own restaurant. And don’t ask me how he gains access to the Ladies’ Room – I only know that I haven’t had to purchase feminine hygiene products in years!

“Can you use this?” Dad asked one day, offering me a setting of flatware, rolled up in its own cloth napkin.

“No, I need service for 12.”

I was joking. He wasn’t. Now I have enough silverware to serve more guests than I could ever fit into my dining room. Yes, Dad is sticking it to the man, the only way he knows how.

In a somewhat related – but totally legal – vein, people like to give stuff to him.

It started when Dad was a policeman. Many a night, he would boast about what delicacy he’d been given by one of his “guys” – truck drivers for various companies. Mom always said Dad was a good provider, and he took great pride in that. At any given time, our house was fully stocked with goodies from the Pechter’s man, the Entenmann’s man, the Tastykake man, the Lay’s man, and guys from Coke and Pepsi, among others.

On one notable occasion, as Dad directed traffic around an accident on Main Street, the truck drivers handed items to him as they passed through the intersection. Then, when his arms were full, Dad had to wave them off, much to the amusement of the on-looking merchants.

Dad was generous with his “gift,” often sharing the bounty with family and friends. And, every year, he crammed several rooms in our house with donated TVs, appliances and liquor baskets to be given away as door prizes at the Policemen’s Dance.

When I was older -- and after I saw The Godfather -- I thought Dad was on the take. But that unsavory theory has been put to rest as Dad has continued to charm the manager at Panera Bread and grocery store workers into giving him freebies, long after retiring his uniform.

Sometimes I wonder -- if Dad had been born at another time and earned a college degree -- how successful he would have been as a fundraiser or public relations professional. But then I don't think he would have enjoyed the joyful triumph of getting something for nothing nearly as much.

Dogs

2010-05-29T23:18:00.002-04:00

My life has always included a dog.

Sarge was the collie mix my parents had when they were first married. Named for my dad’s rank in the Air Force, I didn’t know Sarge well since he was relegated to the basement after Anthony and I came along to ease Mom’s cleaning regimen. I hardly noticed when he passed away of old age.

Then, the summer I was eight, we got Ralphy. A bassett hound/beagle mix puppy, Ralphy was sweet, but capo dost (“hard head” or obstinate). He was fearless and did not hesitate to go toe-to-paw with my father over a stolen shoe or – one time – a stick of butter taken from the kitchen counter.

Ralphy was my dog. I woke up early to walk him, and trained him to sit, stay, “speak” and shake. During each of my extended hospital stays, my parents said Ralphy searched the house, looking for me. And as I recuperated at home, I was never alone with Ralphy at my bedside.

Bassetts and beagles are prone to tumors, and Ralphy had his fair share. All were benign until the one that took hold in his liver when he was 13. By the time we’d discovered it, the tumor was as big as a grapefruit, and so painful Ralphy would fall asleep sitting up.

We ended his suffering on Dec. 4, 1983 – one month and one day after my grandfather died. Later, Mark said I had cried equally for them both. I begged my mother to get another dog, but she’d had enough. “When you and Mark get married, you can get your own dog,” she said. One wrinkle: Mark had been allergic to dogs as a child, and he didn’t know if -- like his asthma -- he had outgrown that malady. We decided to chance it, but I told him, “If you are still allergic, you’re going on medication, because we are NOT returning the dog!”

We rescued Maggie from an animal shelter in South Orange, NJ. She was a black, spaniel mix, about 15-months-old, and shell-shocked from abuse. It took years before she trusted us to step over her while she slept, causing more than a few near-falls for Mark and me.

Not only was Mark not allergic to Maggie, he formed a strong bond with her. She was his first real pet and the perfect addition to our new home, just one month after our wedding. After J was born, eight years later, we learned that Maggie wasn’t crazy about kids. She wasn’t aggressive towards J; she just ignored her.

Later in life, Maggie developed lymphoma. We kept her comfortable on medication and let nature take its course. Then, in September 1999, as Hurricane Floyd was bearing down on Raleigh, Maggie lost control of her hindquarters and she couldn’t walk. “A system failure,” was what the emergency veterinarian told us, and the difficult decision was made to put her down. She was 15-years-old.

Mark took Maggie’s loss especially hard and vowed that we’d have an extended mourning period before considering another dog. Then, one sunny day in October, he suggested we go “look” at the animal shelter.

“If we go to the animal shelter today, we’re getting a dog today,” I told him.

Can’t say I didn’t warn him – that afternoon we adopted Sandy.

A husky/shepherd mix, Sandy was three-months-old when we brought her home. J named her for the sandy color of her face, and she is the sweetest dog I’ve ever had. She’ll be 11 in July, but most people think she’s still a youngster. Sandy and J have grown up together, and, when R was an active toddler, Sandy had infinite patience. However, when she’s hurt or scared, I’m the one she comes to.

Despite the ache of arthritis in my lower back each morning, I feed Sandy and let her out, since I’m usually the first one up. As I shuffle to the kitchen while Sandy scampers ahead of me, I wonder if I will have the strength and will to start over with another dog, after her time with us ends. Probably. Because, in my mind, a home is not complete without a dog.

Living life

2010-05-07T22:11:00.001-04:00

Crisis management is a vital parenting skill that I learned from a master – my mother.

When faced with my spondylolisthesis diagnosis and the reality that their 13-year-old daughter needed major spinal surgery to avoid paralysis, both my parents were matter-of-fact. Did I want the surgery? Was I comfortable with the surgeon? And, if either of my parents were freaking out on the inside, I never knew it.

During my surgery, Mom prayed and visualized Jesus carrying me. That brought her peace. Afterward, my surgeon, Hugo Keim, reported that all had gone well and I was fine. Dr. Keim and Mom never hit if off; he reserved his warm-and-fuzzy bedside manner for his patients, and didn’t have much charm leftover for their parents. Yet, after each of my surgeries, he updated her personally, instead of delegating the duty to a junior doctor on his surgical team. For that, Mom was grateful.

Post-op, I was in a body cast for six months. The kicker: for the first three months, I was bed-ridden so the spinal fusion could heal properly.

Caring for me at home was a challenge that Mom seemed to enjoy. She’s a natural at troubleshooting and, by the time the gurney rolled me through the front door, everything was in place.

One of my father’s brothers had located an old-fashioned hospital bed – crank-style – that he had cleaned and painted white. And, instead of sequestering me upstairs in my bedroom, Mom decided I would be in the dining room on the first floor “where all the action is,” she said. So, the dining room table and chairs were moved into the living room, creating a crowded by usable arrangement.

Since Mom had gone back to work by then, a phone was installed at my bedside. I was also given one of Dad’s police whistles to summon assistance, if needed, after everyone had gone upstairs to bed. With Dad working rotating shifts, Mom coming home midday for lunch and my brother checking in a few hours before Mom at day’s end, I was covered!

I didn’t realize it at the time, but Mom was teaching me how to deal with life’s curveballs. The takeaway: make a plan and execute, and keep living your life.

Happy Mother’s Day, Mom!

Size matters

2010-04-16T23:14:00.001-04:00

“Don’t gain any weight.”

That was the parting advice from my rheumatologist during a recent visit.

Years ago, I was told that each one-pound gain in weight adds 10 pounds of pressure to your body’s joints. And this information from Johns Hopkins reports similar findings.

However, a weight gain of two or three pounds (okay, three!) is inevitable whenever I visit my parents. My mother’s amazing cooking and baking, combined with my father’s continual stockpiling of sweets (he brings pocketfuls of free cookies home from the bank every day), usually sabotages my best intentions within 24 hours.

Prior to my Easter visit, I had seen a number on the scale that had eluded me since before my son was born nine years ago. And, when my weight is down, I do notice a difference. There is less morning ache in my lower back and the stiffness in my hip decreases. I stand straighter and walk without a noticeable limp. Good motivators all, but no match from Mom’s homemade lasagna and meatballs.

So far, I’m down one pound. Considering there are still jelly beans and peanut butter eggs in the house, I count that as a major triumph.

Other news from the rheumatologist: 1) the arthritis in my hip is only in certain areas, but not the entire joint, and 2) the severity of my arthritis -– as evidenced by my X-rays -– means I qualify for a permanent handicapped placard. So, I’ve got that going for me, too.

BOGOs, freebies and squirrels

2010-03-26T22:49:00.003-04:00

Last weekend, I celebrated my birthday at my parents’ home.

Mom and Dad are both retired, yet they have each approached retirement in their own unique way.

Mom is a social butterfly. If I don’t catch her by phone in the morning after her daily walk, she’s often out and about until late afternoon. She is in high demand to play bridge and Mah-Jong with several groups and -- as a three-year breast cancer survivor -- also volunteers to counsel newly diagnosed patients. On less structured days, she goes out to lunch or to the movies with her friends.

Meanwhile, Dad’s days are pretty predictable: 18 holes of golf (within two hours; he’s an express golfer) and a brisk walk before dozing in front of the television for the remainder of the day.

The afternoon I arrived for my birthday weekend, I woke Dad from his intermittent nap so he could brief me on his favorite topics (aside from golf): BOGOs, freebies and squirrels.

As I mentioned in a previous post, Dad is a product of the Great Depression, so he’s always looking for a deal. He and Mom comb through the grocery store ads and visit several stores each week to hit all the sales. (That’s where I get it from!) Dad also collects buy-one-get-one (BOGO) free coupons for fast food restaurants by fishing through the trash at the post office. Apparently, a lot of people toss those valuable circulars after they’ve sorted through their mail. He keeps more coupons than he and Mom could hope to use, but he also spreads the wealth among the golf course starters, and other friends.

Scouting out the free meal offers from banks and financial advisors has also become an exact science. The meal and venue need to be of a certain quality before my parents will consider attending. They recently found freebie nirvana on St. Patrick’s Day. The event featured a sumptuous buffet with a wide variety of offerings, and a Venetian table of desserts. Jackpot!

Then, there are the squirrels. Dad pursues squirrels with a level of intensity that reminds me of Bill Murray’s quest to kill the gopher in Caddyshack. Although explosives are not yet part of Dad’s arsenal, he does spent an inordinate amount of time scheming to prevent squirrels from gaining access to the bird feeders in the front and back yards. Recently, he greased the surface of the backyard feeder with Vaseline. “It works!” he told me gleefully. “They slide right off.”

Yes, it’s the simple things that keep life exciting in my parents’ retirement. They deserve that, and more. So, here’s to many future birthdays and everydays, talking about BOGOs, freebies and squirrels.

Happy Anniversary, 'Maria Talks Back'

2010-03-11T17:04:00.001-05:00

It has been one year since I started this blog. Time does indeed fly!

My original goal for entering the blogosphere was to establish an online platform for my memoir, Growing Pains.

Life continues to get in the way of my completing the current revision – I’m just pages away! – but, a lot of unexpected, pleasant things have happened in the meantime.

Most notable: I met Suzette and Emily Schrump, and Katherine Southard (aka, Miss North Carolina). Our crusade to convince United Healthcare to cover Emily’s doctor-prescribed brace treatment for her scoliosis was a rewarding triumph that I cherish. And, after meeting that challenge, we continue to stay in touch via Facebook. That’s how I knew that, today, Emily received her third brace. You grow, girl!

Looking ahead, I resolve to finish this edit on my manuscript and move forward with the next. It seems daunting now, but a lot can happen in a year.

Becoming a statistic

2010-02-13T15:49:00.004-05:00

My family has reluctantly joined the ranks of the unemployed. It’s a club we hope to be ousted from soon.

This is the fifth time in 25 years that one of us has been laid off. In times past, the financial blow created by one spouse’s job loss was buffered by the continued employment (and health benefits) of the other. This time, that is not the case.

Since I’m self-employed, my income is not as regular or reliable as a “normal” job, so the only thing we’re able to bank on at this point is Mark’s unemployment benefits.

Job loss is akin to losing a loved one. Now, one month into this adventure, we are finally emerging from the five stages of grief, moving towards acceptance – and action.

The kids are feeling the stress, too. J asked if we would lose our house. I told her that’s not part of the plan – and it’s not.

If one good thing has come out of the recession, it’s that there are more options available to help people keep their homes. One is the Home Protection Program. This loan fund program is only available in a handful of states and, luckily, North Carolina is one of them. We are just in the early stages of the pre-approval process, but are hopeful it will work out.

In the meantime, we have returned to a Depression-era mentality of pinching every penny, and taking a hard look at needs versus wants. This is a familiar way of thinking for me. My father still wears T-shirts until they are worn down to nothing – even though he has a dresser stuffed with new ones, still in their packaging.

Recruiters are saying that the job market is opening up and things should start popping by Spring. Until then, if you know of any appropriate opportunities in web analytics/search marketing, and/or business/data analysis, please email me. Prayers are also appreciated!

Good luck, Katherine!

2010-01-29T17:43:00.003-05:00

During the two and one-half years I wore a Milwaukee brace (between 1976 and 1979), the medical focus was on the physical. No one ever inquired about my emotional state, and how it “felt” to be in such a visibly restrictive apparatus, 23 hours per day.

Thankfully, things have changed. One of the agents of that change is Katherine Southard (a.k.a. Miss North Carolina).

Recently, Katherine discussed scoliosis, self-esteem and tolerance with students at South Harnett Elementary School in Bunnlevel, N.C. Katherine appeared at the behest of 10-year-old Emily Schrump. As you may have read in previous posts, both Katherine and Emily (like me) are scoliosis patients.

During her speech, Katherine (whose platform this year was “Scoliosis: Ahead of the Curve”) engaged the students by explaining scoliosis and showing them Emily’s Boston brace. Her core message: it doesn’t matter how people look on the outside; it’s what’s inside that counts.

I was able to generate some great (if I do say!) media coverage of Katherine’s appearance at Emily’s school. The stories ran this week in the News & Observer and the Fayetteville Observer-Times.

If her commitment to Emily is any indication, Katherine has made a tremendous impact during her reign as Miss North Carolina. In August, she secured a $500 shopping spree at Peebles clothing store, to help Emily buy back-to-school clothes that would fit over her new brace. Katherine also connected me with the Schrump family, and what a rewarding experience that has been! Together with Emily’s mom, Suzette, we’ve taken on a health insurance giant and scored some cool media opps along the way.

This weekend, Katherine will be competing in the Miss America pageant . Please join me in wishing her the best of luck!

Secrets of the IT band

2010-01-13T20:00:00.002-05:00

I’m standing a little straighter, and walking a little easier these days, thanks to the knowledgeable folks at Aquatic PT.

Kim, one of my physical therapists there, recently discovered that my Iliotibial (IT) band is incredibly tight and tender. So tender, in fact, that I nearly jumped off the exam table when she pressed on a particularly sensitive spot.

During all the years I have sought exercise and physical therapy for my back and hip issues, nobody has ever mentioned the IT band. Apparently, it’s pretty important and, in my case, a common denominator affecting my hip, knee and lower back.

The IT band is a long tendon that exists along the outer thigh, from the hip to just below the knee. IT band syndrome (injury and inflammation to the IT band) is more commonly seen in runners, but it can also occur in people with uneven leg length or weak hip abductor muscles – like me.

Kim initially treated my IT band with ultrasound to promote healing and loosen the tendon’s tightness. Just the gentle passing of the ultrasound wand made me wince in spots, but I saw an immediate improvement in my overall flexibility and achiness.

To supplement the ultrasound, Kim gave me a new stretch to do at home that specifically targets the IT band. Bryan, another of my therapists, explained that both approaches will attack the tightness of my IT band on two fronts, simultaneously loosening the tendon (via ultrasound), and then keeping it loose with the stretching exercise.

Progress has been incremental, but dramatic. I’m walking less like Quasimoto when I get out of bed in the morning. My gait is more fluid and I can stand straighter – and longer – almost without effort.

Kim and Bryan are encouraged, too -- which is why ultrasound has become a recurring part of my gym appointments.

Merry Christmas

2009-12-24T22:58:00.001-05:00

As Chevy Chase so wisely put it at the end of National Lampoon’s Christmas Vacation, [paraphrasing here] each person defines Christmas in his or her own unique way.

For me, Christmas is a collage of memories and feelings. It’s also been a checkpoint in time; an opportunity to take stock of where I’ve been and where I want to go.

Thirty years ago, I celebrated my first Christmas of freedom from back braces and body casts. But even before that wonderful year – 1979 – there are many fond memories of Christmases past, spent with family and friends, that combine to create my definition of Christmas.

Time and circumstances have altered the how and where of the season. I no longer live near extended family, and many of the relatives from my parents’ and grandparents’ generations have passed on. So, the focus is now on the next generation – my children – and helping them establish a foundation, rooted in tradition, upon which to build their own Christmas memories.

Traditions from my childhood -- like meatless Christmas Eve dinner and waiting until Dec. 24 to place the Holy Family in the manger – endure. And they join new customs like delivering Christmas cookies to our neighbors, and going to the movies between dinner and dessert on Christmas Day.

May you and yours create your own, special Christmas memories and enjoy peace, love and joy now and throughout the New Year.

From the hip -- redux

2009-12-08T16:10:00.003-05:00

X-rays ordered by Dr. Kabir, my new rheumatologist, confirmed that I have severe osteoarthritis and loss of joint space in my right hip. No surprise, as I’ve noted in a previous post.

However, Dr. Kabir said I am “nowhere near” needing a hip replacement.

That was reaffirming – and good news to share with my family, especially my eight-year-old son who wants to know when I’m getting my new hip.

So, instead of contemplating surgery, I’ve started physical therapy. Dr. Kabir said she has heard good things about a place called Aquatic PT and Beyond, so I agreed to give it a try.

In the past, physical therapy meant reviewing my exercise regimen and tweaking it as needed. I pitied those poor souls who actually spent multiple appointments -- and precious time -- working out on the gym equipment during countless PT sessions. In contrast, I mastered my new moves in a few visits and was happily off doing my home program.

At Aquatic, though, I’m being treated to the full spectrum of traditional and aquatic therapy – and I like it! Gym and pool appointments alternate with a therapeutic massage every third visit. Imagine, a massage that’s covered by regular health insurance!

Bryan is my primary therapist. At my first visit, as he gathered my medical history, he asked when my spinal surgeries were.

“In 1975 and 1978. And let me guess, that’s before you were born, right?” I said.

“Uh, yeah, a bit!” he laughed.

Damn, it sucks getting old!

After examining me, Bryan declared my right quadricep one of the tightest he’s ever seen – and that’s “tight” in a bad (inflexible) way. Visually, imagine lying supine on a table and dangling your leg off the side. My right thigh remains parallel to the tabletop. Consequently, I receive an abbreviated massage at each gym appointment in an attempt to loosen some key trigger points.

These massage sessions can be very uncomfortable. At a recent visit, I told Bryan something he did hurt – and he kept doing it! But the results are worth it. Slowly, I’m feeling fractionally more flexible – something I didn’t think was possible. Bryan has even said he can help alleviate my flat-back syndrome. We’ll see…

Grandma: the later years

2009-11-21T21:29:00.003-05:00

Shortly after Grandpa died, we realized he’d been covering for Grandma and her increasing forgetfulness.

I remember helping Grandma search for her house keys just days after Grandpa passed away. We turned the house upside down and, as the hunt lengthened without success, Grandma became increasingly agitated. “Grandpa, help me find those keys!” I implored. And, when I looked on the dining room table for the hundredth time, there were Grandma’s keys, perched atop a stack of papers.

Mark and I married 11 months after Grandpa’s death (his last wish had been to dance at our wedding), and we moved into the downstairs apartment of Grandma’s two-family house. The rent was low, and we had access to half the basement, a two-car garage, and the double-lot yard. But, more importantly, Grandma knew we were there.

Eight years later, we moved to North Carolina seeking a more affordable area to buy our own home and start our family. Grandma managed to stay in her house a few years longer, with the help of an in-home nurse during the day. Eventually, though, Mom and Aunt Annette made the difficult decision to move her to a nursing home.

Several months ago, Grandma started choking on her food. The doctors said there were two options – insert a feeding tube, or not -- and Mom and Aunt Annette decided to do the latter.

Just days before Mom told me, my eight-year-old son, R, (whose best friend had just lost his grandfather) said he wanted to meet Grandma. Unfortunately, I hadn’t seen her in more than 10 years, but since she no longer recognized anyone, I reasoned she was not aware of that. Then, when Mom called, I decided to return to New Jersey sooner rather than later.

We flew up for a weekend in August and stayed with my brother, Anthony, and his family. Aunt Annette met us at the nursing home and, for the first time ever, all five of Grandma’s great-grandchildren circled her wheelchair, trying to keep her attention before she nodded off to sleep again.

Peaceful. That’s how Grandma looks. The nervous eye twitch and anxious facial expression that had slipped into place after Grandpa’s death are gone. The only indication that she has anything but happy thoughts is her tendency to jerk her clenched fist up and down, as if she is stabbing at something in her lap; that and an intermittent grinding of what’s left of her teeth that creates a friction-on-rubber sound -- the only sound she makes anymore.

Her skin is smooth and soft; her face almost devoid of wrinkles. For some unknown reason, I asked Aunt Annette’s permission to touch Grandma. She encouraged me, noting that, aside from family visits, the only human touch Grandma receives now is from strangers who care for and feed her.

It was probably my imagination, but Grandma’s clenched-fist jerk seemed to slow as I stroked her arms and hands. While my daughter, J, organized some of the other nursing home residents for bingo, I stood by Grandma’s side, caressing her blue-veined hands and remembering how she had firmly held my much smaller one when we crossed the street on a long-ago spring day.

“So, Easter is the day after tomorrow?” I asked.

“No, the day after, the day after tomorrow,” Grandma explained.

“Right, the day after tomorrow.”

“The day after the day after tomorrow.”

“Yes, the day after tomorrow.”

“Okay, today is Holy Thursday, tomorrow is Good Friday. The day after tomorrow is Holy Saturday and the day after that is Easter Sunday.”

“Oh…”

Grandma’s hands never learned to drive, but could de-bone a chicken like nobody’s business. They were strong hands that helped her become a forelady at Sherman’s sewing factory on Central Avenue in Orange, N.J., and scrubbed my face so hard I thought it would come off with the dirt. And her hands were kind as they pressed money into mine when she thought my mother wasn’t looking, and slipped our dog, Maggie, table scraps on the sly.

The good news (thanks to a barium swallow test) is Grandma doesn’t need a feeding tube; just a softer, more liquefied diet. So, her 99th birthday on Thanksgiving may not be her last.

Happy Birthday, Grandma!

What would Grandpa think?

2009-11-03T11:39:00.003-05:00

Twenty-six years ago today, Grandpa died.

It started in Summer 1983. He was losing his balance and coordination. Diagnosis: a brain tumor that was successfully removed. He went for radiation treatment as an outpatient, but when he started chemo, the stress of caring for him at home proved too much for Grandma, so he returned to Orange Memorial Hospital.

Orange Memorial. The place where Essex County’s ailing elderly went and -- more often than not -- stayed until they died.

The place was a well-oiled Medicare milking machine; a sterile environment in which to languish while Nature took its course – and Medicare paid the bills.

Such was Grandpa’s fate. A few days before he died, the doctors noticed he had jaundice. The reason: liver cancer.

Based on the limited knowledge I have about cancer and brain tumors, I know that primary brain tumors are extremely rare. In all likelihood, Grandpa’s brain tumor was secondary to his liver cancer. Could he have survived if his doctors had been more thorough? Probably not. But, I think his last days may have been very different – and the final cost to Medicare, greatly reduced.

Although I try not to think about the hopeless pain of Grandpa’s last hospital stay (there are, thankfully, so many other wonderful memories of him that I cherish), I can’t help wondering what he would say about our nation’s current health care debate.

Politically, he leaned to the right – like the rest of my family (I’m the political “black sheep”), but I remember him diffusing more than one argument at the Sunday dinner table by quoting, “I may not agree with what you have to say, but I’ll defend to the death your right to say it!”

In recent weeks, I’ve been cautiously optimistic that a spark of compromise is in the works in our nation’s Capitol with regard to health care. And, if he had lived to see it, I think Grandpa would be open to the possibility of such change. As I reflect on Grandpa’s memory today, I’m hopeful that we’ll all do what we can to fan that spark into a flame.

Do you love your health care?

2009-10-22T05:02:00.003-04:00

Yesterday, I was listening to the Brad and Britt show while I was out running errands. They’re an entertaining duo, kind of a more reasonable and subdued version of Hannity & Colmes – before Colmes got the boot. They do their homework and offer intelligent commentary on the issues of the day. Lately, they’ve been talking a lot about health care.

When I tuned in, they were taking phone calls, asking people “do you love your health care?” And, a surprising (to me, at least) number of people were answering “yes.”

The one call I was able to hear in its entirety (it's annoying, getting caught up in an interesting discussion on the car radio, only to wonder what I’ll miss because I’ve reached my destination), was from a father whose disabled daughter had passed away last year. Now, I realize everyone grieves in their own way, but this guy sounded too matter-of-fact (or, as Mark noted, “chipper”), given his situation. Brad and Britt sounded dubious, too, hesitantly offering their condolences.

But I digress.

The father said he loved his health care (via United Healthcare). As his daughter’s health had declined, UH had covered everything, except one ambulance ride – and that was because it had been coded incorrectly. He went on to knowledgeably describe how you can’t get all your health care services up front. You need to pace yourself. In other words, know how to work the system.

And that’s when I had my (albeit belated) A-Ha! moment.

Americans are complacent about our health care system. It’s become second nature to us to “work the system,” and if we don’t know how, our doctors guide us through it.

As noted in a previous post, it shouldn’t be this way. It’s time to turn this country around, and get us on course with the rest of the industrialized world – those countries who make it a priority to offer everyone the quality health care they need, when they need it, for an affordable price.

MY health care saga

2009-10-10T10:28:00.003-04:00

I embraced Emily’s story because I could relate to it on multiple levels: 1) I also have scoliosis; 2) I totally “got” her mom, Suzette, and her will to fight for the best medical care for her child, and 3) like most Americans, I have my own health care horror stories.

Most recently, my husband, Mark, was recruited for a great job opportunity. He wasn’t even looking, but the timing was right. He felt stagnant where he was. The new job was a terrific career move with a good company, and it even paid a little more. And yet we agonized over whether to accept. Why? Health care.

The new position is a contract job through an agency that offers group health insurance to its employees. But how did this plan compare to what we already had? What were the deductibles and co-pays? How much would it cost us each month?

We couldn’t get these answers until Mark actually “accepted” the job and was entered into their system (Mark told them up front that if the health care didn’t pan out, he’d have to walk away). Only then did we receive access to the details we needed to make a final decision.

Once the decision was made, you know what comes next -- a one-month waiting period (October) until the health insurance kicks in.

Since Mark has an uncanny sense of knowing when to leave a company (his resume is a list of places that have either gone out of business or drastically downsized), I’ve become somewhat of an expert at this dance. I rescheduled dentist and doctor visits to occur after Nov. 1. When my son, R, did need to go to the doctor’s office last week, I told them we’re temporarily without insurance and they usually knock off the administrative costs of the visit to reduce our bill. We’ve asked for free samples of medication and, barring that, have received coupons to refill our prescriptions.

And then there’s the switch from Blue Cross / Blue Shield to Aetna. Ironically, the plan with Aetna will be less expensive, cutting our co-pays by more than 50 percent. But, are all our doctors in-network?

Yes, except for the rheumatologist I was planning to see for my hip. So now I need to postpone that until I can research who IS in-network and check to see if my internist has ever heard of them.

We also learned, right before our old insurance ran out on Sept. 30, that Mark has a torn meniscus in his right knee. He needs surgery, but we’re postponing it until we’re covered again in November. Hopefully, he’ll be able to get by with the help of a cortisone shot or two.

Sadly, nothing I’ve said here is out-of-the-ordinary. I’m sure you’ve encountered many, if not all, of these scenarios yourself at one time or another. But it shouldn’t BE this way!

Getting back to basics

2009-09-25T10:10:00.004-04:00

Not much new to report on the Emily front. I’m still trying to generate some more media attention, but the growing influence of social media and the internet is having a decidedly negative impact on traditional media outlets. Space and air time are limited, but I will keep plugging.
------------------------------
Back to basics
And now, if you'll indulge me, I'd like to return to the primary topic and purpose for "Maria Talks Back" -- my memoir, Growing Pains.

When you’re self-employed, it’s the nature of the beast. Work ebbs and flows. But when I’m busy it’s a challenge to carve out time each week to market myself to ensure that the work will keep flowing.

Instead, I tend to prioritize things that have a deadline – which may be why I haven’t worked on the latest revision of my memoir in awhile.

It’s frustrating. I’m just pages away from finishing this latest edit. And when I'm finally done, I'll start all over again, at the beginning.

Since starting this blog, my voice has changed – for the better (or at least I think so). And I want that same viewpoint reflected in Growing Pains. I suppose that’s part of the process as a writer. To grow and learn and change.

Ironically, I look forward to starting over. Despite my medical challenges, the people and places I’m writing about -- those who shared in my struggle -- are infinitely dear to me and I enjoy “visiting” them through my writing.

Therefore, I’ve declared my office a Do it Now! zone.

Wish me luck!

Using my powers for good

2009-09-12T14:12:00.005-04:00

When I started writing about Suzette and Emily last month, I never dreamed that my efforts would nudge an insurance giant like United Healthcare to do the right thing.

I need to work on raising my expectations.

Indeed, Suzette recently emailed me with the wonderful news that UH finally paid the thrice-rejected claim for her daughter Emily’s Boston Brace, covering 60 percent of the cost ($1,369.23) – in-network benefits to an out-of-network provider due to “medical necessity.”

If you know anything about brace treatment for scoliosis in young adolescents, you know that Emily, as she grows, will need subsequent Boston Braces. However, Cindy, the UH rep who confirmed UH’s action on the family’s case, told Suzette to contact her directly if she has any problem with future claims.

Suzette credits the WPTF radio interview she and Emily did on Aug. 19, the result of a media pitch I made to the station’s news director, for reversing UH's previous decisions. After months of frustration, dealing with UH’s bureaucracy, Suzette wrote in her email to me: “My gut feeling is…(i)f not for the WPTF 680 AM radio interview, NOTHING would have prompted this company to ‘re-review’ this claim. NOTHING.”

If she’s right, I’m thrilled I could help, but Suzette deserves a large chunk of the credit. A fellow “mama bear,” she is one of the most tenacious individuals I’ve ever met. You only need to read (and believe) the quote at the end of her emails to understand why: “There comes a time when you have to decide whether to fish or cut bait.....And I take fishing to the EXTREME!!!!!”

Bottom line: if Suzette didn’t have a paper trail a mile long, documenting her relentless efforts to make a case for Emily’s doctor-prescribed brace treatment to UH, this story would have never sprouted the wings that it did.

It’s unfortunate that ANYONE needs to go to such lengths to be heard when they’re just trying to ensure quality health care for their family. That’s why Suzette and I have agreed to continue sharing her family’s story in the hope that other families may avoid what theirs has had to endure.

Suzette and Emily: on the radio

2009-08-27T16:32:00.007-04:00

Much has happened since my post, “Scoliosis, Miss North Carolina and Emily.” After writing it, I wanted to do more for Emily and her family by getting the word out beyond the confines of this blog. So, I made several media calls and, a few days later, Suzette and Emily were “live” on Raleigh’s radio waves, talking about United Healthcare and its repeated denial of the claims for Emily’s Boston Brace.

Before the scheduled appearance, Suzette and I made certain that our collective Facebook friends knew about it, and WPTF contacted UH. The station offered UH’s representative an opportunity to be on the phone during the show to comment, but the company declined, citing privacy issues related to HIPAA. Suzette volunteered to fax her permission, waiving HIPAA restrictions, but UH maintained they could not comment.

During the show, Suzette did most of the talking, and she rocked! In a calm, articulate voice, she explained the circumstances that had brought the family to this point. You can hear the entire interview here: http://www.wptf.com/goout.asp?u=http://billlumaye.blogspot.com/.

Afterwards, the UH rep did a 180 on the privacy issue. According to Suzette, he emailed WPTF some “thoughts” about Emily’s case, without obtaining consent from Suzette beforehand. Basically, it was a PR-laced regurgitation of UH’s position: that the brace was not eligible for insurance reimbursement because Suzette went to an out-of-network provider to obtain it. He also reiterated that UH had referred Suzette to two in-network providers (Suzette said they only referred her to one), but failed to acknowledge that these INPs were not capable of producing the custom-made Boston Brace that Emily’s orthopedist had prescribed.

Consequently, Suzette was “angry as a fire ant!” She sent an email to the UH rep, correcting his misinformation and berating him for his company’s response – or lack thereof – up until now. To date, she has not heard anything further.

On a lighter note…
I’m happy to report that Emily has gone back to school, stylin’ and profilin’ in her new wardrobe from Peebles. Katherine (Miss North Carolina, pictured right with Emily) joined the family at the company’s Lillington, N.C. store to watch Emily model her new rags, and even let Emily wear her crown (see below).

Peebles donated a $500 gift card to Emily so she could purchase clothing that would fit over her new Boston Brace. Having first-hand knowledge of that dilemma myself, I’m thrilled for her.

I’m hoping to get some additional media coverage for Suzette and Emily soon. In the meantime, if you have any suggestions for this family, please let me know.

Scoliosis, Miss North Carolina and Emily

2009-08-12T11:49:00.007-04:00

You gotta love Facebook. Thanks to this online community, I am now on a first-name basis with Katherine Southard, Miss North Carolina 2009 .

Turns out Katherine is a fellow scoliosis patient, and she has made a commitment to raise awareness about scoliosis and its treatment during her reign as Miss North Carolina.

Last month, during her July 4 appearance at Fort Bragg, N.C., Katherine met Emily, a 10-year-old-girl who is struggling to adjust to her new Boston Brace.

The diagnosis
Emily was diagnosed with an “S” curve (15 / 17 degrees), as well as a spinal syrinx, at age five. During the past five years, her family has played “watch and wait,” trekking from their home near Fayetteville, N.C., to UNC Hospitals in Chapel Hill, N.C., every four to six months where Emily was subjected to several MRIs under general anesthesia. Finally, on May 5, 2009, they heard the news they’d hoped to avoid. Emily’s curves had progressed to 30 degrees each, thoracic and lumbar – the magical number to warrant bracing.

If you or someone you love has ever received a fateful diagnosis, you’re familiar with the swirl of emotions that follow. Denial, fear, anger, frustration and helplessness are all present and accounted for among Emily, her parents Suzette and Michael, and her brother, Dakota (pictured above, with Emily).

Shortly after the May 5 doctor’s appointment, Emily told Suzette, “Mommy, my having this stupid scoliosis makes me feel like I am going to die.” She’s also had to give up her spot on the pitcher’s mound of her softball team, since she cannot bend or twist quickly enough to catch and grasp the ball. For his part, Dakota is angry about Emily’s scoliosis and wants an answer for the unanswerable: why? “He feels like he’s lost part of his sister because the two of them can’t play and wrestle like they used to,” Suzette said.

The health insurance
Emily’s orthopedist wrote a prescription for a Boston-style TLSO brace to be custom-made for her by Bio-Tech Prosthetics and Orthotics in Durham, N.C. However, since Bio-Tech is an out-of-network provider, Suzette said the family’s health insurance company (United Healthcare) referred her to Orthofix for Emily’s brace. According to Suzette, the Orthofix rep said he did not know why UH had referred Emily to Orthofix. “He said, ‘your daughter needs a custom-made Boston brace. Here, I have small, medium and large.’” Suzette said.

So, Suzette took Emily to Bio-Tech to fill the doctor’s prescription for a Boston Brace and filed a claim with UH. So far, the $2,282.05 claim has been denied three times. Another claim ($1,272) for treating Emily’s brace-induced sleep apnea has also been denied.

In addition to filing several appeals to UH – all of which have, to date, been denied -- Suzette, a tireless advocate for her child, also requested the physician’s reviewer notes to learn who was denying the claim and why. According to Suzette, the physician advising UH about this orthopedic-related health care decision is a plastic surgeon who has not been in active practice since 2003.

Help in the form of clothes
Since receiving her Boston Brace on June 9, Emily has gone from referring to it as “claustrophobic,” to self-consciousness about how others perceive her appearance. She wears the brace 23 hours per day, removing it only to bathe or swim. As the first day of a new school year approaches, Suzette has been scrambling to find stylish clothing that fits over the brace and will help Emily’s self-image.

During her appearance at the Ms. Statesville Pageant, Katherine told her audience about Emily, and asked for clothing donations. Afterwards, a woman from Peebles offered to provide clothes so Emily could go back to school “feeling good about herself.” Emily will receive her new wardrobe at the Peebles store in Lillington, N.C. later this month.

As a mother, I can only imagine what Suzette is going through. Dealing with your child’s scoliosis diagnosis is more than enough to handle, but having to do battle with the health insurance company – and now the mortgage company – is pushing Suzette to the end of her limits.

Health care reform cannot come soon enough for this family. So, if you have any suggestions or offers of assistance, let me know. I will gratefully pass them along.

Aug. 4, 1979

2009-08-04T15:51:00.002-04:00

On this day, 30 years ago, I celebrated the removal of my second and final body cast with family and friends during a “coming out” party.

The cast was officially removed on July 31 and, by the time my party date arrived, I was well and truly certain that my treatment for scoliosis was over.

No more spinal surgery. No more braces and casts.

It’s ironic that I have, after a lengthy hiatus, resumed revising my memoir, Growing Pains, today. I am almost at the end of the manuscript, which is what suddenly alerted me to the significance of today’s date.

I had a great time at my party. I remember feeling that a tremendous burden had been lifted – something far heavier than the weight of my cast. I’d been set free from scoliosis. It’s a feeling I’ve never forgotten. One that still makes me smile, 30 years later.

Aging not-so-gracefully

2009-07-28T21:03:00.001-04:00

“Don’t ever get old,” my father likes to say, to which my mother chimes, “Hey, it’s better than the alternative!”

Aging is okay if you can maintain a tolerable quality of life. In that regard, my parents are fortunate. I hope I will be as lucky.

Mary came by for lunch yesterday and we were talking about aging as scoliosis patients. We both agreed it’s scary to think about what shape we’ll be in when we’re ready to activate our respective AARP memberships.

The reality of flat-back syndrome (http://tiny.cc/aJi8H) and its gradual progression was starkly evident as I recently flipped through pictures from my college graduation 25 years ago. What great posture I had then, and how naïve my smile, thinking it would last.

Now I cannot bear the sight of myself walking, bent forward at the waist no matter how hard I try to straighten. I rationalize that my hip plays a part in my plight, and that will be corrected when I finally cave and get a new joint. But the flat-back will remain – and possibly worsen.

Writer Howard Phillips Lovecraft said, “The oldest and strongest emotion of mankind is fear, and the oldest and strongest kind of fear is fear of the unknown.”

That pretty much sums it up.

After all the challenges I faced during my teens –- and those I’ve realized as a wife and mother -- I don’t consider myself timid in the face of adversity. Fear of the unknown is a formidable foe, but I'm steeling myself for the battle.

Grandpa

2009-07-12T16:02:00.004-04:00

One of the greatest gifts a parent can give a child is to teach them how to manage their money.

It’s a lesson I’m in the midst of with my daughter, J. At her age (17), the equation is pretty simple: Summer Job + Money Earned = Car. Obviously, there’s a learning curve but – after several missteps – I think she’s starting to catch on, albeit grudgingly.

She’ll thank me later. OMG, my mother used to say that! Which is appropriate. My knack for money management came from her, and she learned it from her father – my grandpa.

He was the patriarch of my extended family. The reason Grandma cooked a big, Italian meal that brought us together on Sundays. And I was the apple of his eye. His first-born’s first born, and the only granddaughter. To Grandpa, I could do no wrong.

When I think of Grandpa, I remember loving bear hugs, church, cigars, mixed drinks, American-made cars and Al Jolson tunes. During his lifetime, he was a radio personality, a bartender, an auto parts salesman, a battery expert for the U.S. Navy’s Landing Ship Transports during World War II, and a minstrel show performer. He was active in our church as an usher and “knight” and, to this day, when I go to church I feel like I’m visiting him.

Grandpa had a rich, booming voice that resonated when he sang around the house. He assumed the best of everyone, never met a stranger and was quick with a smile and firm handshake.

My continuing revision of Growing Pains allows me to return to a time when he was vibrantly alive, seated at the head of the dining room table, asking for my permission to have his customary, post-meal cigar.

I miss him, but I’m doing my best to ensure his legacy continues. Which is why J is going to learn how to efficiently handle her money. She may appreciate my efforts later, but it’s really Grandpa she should thank.

Making a Difference

2009-07-03T12:03:00.003-04:00

June 2009 was the first-ever National Scoliosis Awareness Month. I was surprised and pleased to recently learn I was part of the National Scoliosis Foundation’s “Making a Difference” slide show (http://tiny.cc/9MEcv) marking this historic observance.

Thanks to my friend, NSF president and CEO Joe O’Brien, and everyone at NSF for including me, and for all you are doing to raise awareness about scoliosis and its treatment.

RIP, Michael

2009-06-26T13:31:00.000-04:00

My personal media filter is up and running in the wake of yesterday’s news that Michael Jackson -- musician, dancer, artist -- has died of an apparent heart attack.

I don’t want to hear about the past scandals, the eccentric behavior and the massive debt. I just want to enjoy my own memories of Michael and the Jackson Five as they blazed a new trail in musical entertainment during the 1970s, creating their own sound and style. Michael took that groundbreaking tradition further when he went solo, securing his place as the bonafide “King of Pop.”

I grew up with the Jackson Five, singing and dancing to their albums in the privacy of my bedroom. My family had to pound on the door to get my attention, so absorbed was I in the magic of their music.

It’s amazing how many generations of people throughout the world know of Michael Jackson and his incredible talent. As I listened to the BBC this morning, folks from around the globe were reminiscing about him, and how his music and dancing affected their lives.

I count myself among them now as we all mourn this tragic loss of an icon.

Spinal fusions, pregnancy and childbirth – oh my!

2009-06-17T14:56:00.002-04:00

A high school friend recently said she was relieved that my spinal fusions had not prevented me from having children. That surprised me. I never thought of my back being a hindrance in that way. In fact, I’d always considered my spine to be stronger than average, having been fortified through fusions.

However, I did consider if I should reproduce – and risk passing spondylolisthesis and scoliosis to my progeny. As I point out in my memoir, if I’d been born a century earlier, I would have been paralyzed by the time I’d reached child-bearing age, and my genes would have stopped with me.

It was amazing how quickly those lofty ideals fell, though, after I married Mark. Subsequently, we have two beautiful children that, thankfully, have not developed any spinal problems.

My first pregnancy was uneventful. Sure, I had some lower back aches, but what expectant mother doesn’t? I remained active by walking our dog every morning and attending a weekly, prenatal exercise class. All in all, I felt great – and very excited to meet my baby.

Then, after 12 hours of unproductive labor – and three incidences of my daughter’s heart rate dropping! – the doctor decided an emergency C-section was in order.

Enter the anesthesiologist. I had not discussed my spinal fusions and the possibility of an epidural up until that point, but when he learned about my previous surgeries his advice was succinct and to the point: “If you’re not having any problems with your back, I wouldn’t risk it.”

The OB who was monitoring my labor and delivery was the one doctor -- out of a practice of five – that I didn’t like. What are the odds? He was arrogant and cocky and actually boasted that he would get that epidural needle in me – if that’s what I wanted.

“Does it matter what I want?” I asked him.

“Of course.”

“Then, put me to sleep!”

Although Mark was in the OR for J’s birth, I hated not being awake for it. So, in the third trimester with my son (who was to be a planned C-section, since he was a Kell baby: http://tiny.cc/XBa0g), I consulted with my then-orthopedist to determine if I had other options. He mentioned a caudal block (http://tiny.cc/wD7qA), but didn’t really advocate for it.

In the end, I was asleep for both of my children’s births and, given the risks, I think I made the best choice for my future spinal health.

The redheaded stepchild of orthopedics

2009-06-08T16:27:00.001-04:00

Make no mistake. Scoliosis is serious stuff. Just ask me – or anyone else who has it.

So, why is it so difficult for scoliosis to be taken seriously?

I’m not talking about people who are afflicted with scoliosis – or know someone who is. I’m referring to the media and the general public, and maybe even some in the medical community.

In my “Milwaukee Brace” post, I cite the scene in Sixteen Candles where a girl wearing the brace attempts to quench her thirst at a water fountain. But, that’s just one example of many I’ve seen and heard where the punch line involves “the kid with scoliosis.”

And while it may be good for a laugh, scoliosis isn’t “sexy” from a publicity standpoint.

Several years ago, I offered my services as a PR professional to the National Scoliosis Foundation pro bono to help them publicize the importance of early screening for effective treatment of scoliosis. Since many school systems nationwide have determined that in-school screenings are cost-prohibitive, the story was a public service encouraging parents to request scoliosis screening at the pediatrician’s office. The most prominent placement of the press release came from a local, weekly newspaper whose editor had an adolescent relative with scoliosis.

Even within the medical community, scoliosis is treated like the redheaded stepchild of orthopedics. So, as a condition, it doesn’t get much attention, and that inattention can extend to its patients.

Last summer I wanted to establish myself as a patient with a local orthopedist that Mary had recommended, but when the doctors learned I was an adult scoliosis patient – in pain – my file was shuffled from one to the other until the pain specialist in the practice finally delivered the news: they couldn’t (or wouldn’t) see me!

I’ve since learned that this is very common for adult scoliosis patients. Why? I have no idea, but I figure any doctor who practices in that manner is definitely one to avoid.

Grandma

2009-05-30T15:30:00.003-04:00

When you think about an Italian grandmother, what image comes to mind? A short, plump woman in a housecoat who loves to cook and bake and watch people eat what she cooked and baked, right?

My grandmother fit most of that stereotype – except I never saw her bake – but she hated being in the kitchen. She cooked to please my grandfather and, every Sunday, she’d make a pot of gravy (a.k.a., “sauce”), meatballs, spaghetti, baked chicken, etc. for our family’s weekly “dinner” at 2:00 p.m.

Before she retired, though, Grandma worked as a forelady in our town’s sewing factory. That’s where she developed a talent for projecting her voice so it would be heard over the din of multiple sewing machines – a trait that remained throughout her life and made my ears ring after any prolonged period in her presence.

I think she got married and had children, just because that’s what was expected back in the 1930s. But she seemed happiest when she told me about her work as a forelady where she earned more money than Grandpa, as I write in my memoir:

“Remember, Maria, when you start working, it’s best to be salaried. That way, you’ll always get a paycheck each month.” Conspiratorially, she leaned closer and lowered her voice. “You know Grandpa wasn’t salaried; he worked on commission, but I was salaried.”

Straightening she’d continue in her normal tone. “And when you get a raise, make sure you save half of it; just put it in the bank and forget about it. You were doing fine before you got it, right? So you won’t miss it if you put it aside, and then you’ll still have the other half to do with as you please. That’s what I always did.”

The third of eight children, Grandma’s father died when her mother was pregnant with Grandma's sister, Dehlia. As a widow – before Roosevelt’s New Deal and social security benefits -- great-grandma re-married soon afterwards, but her new husband turned out to be an alcoholic who routinely abused his wife and children. Grandma never trusted him:

“I was so afraid that one night he’d kill Mama and all of us,” Grandma said, her eyes wide. “I’ll never forget the night I saw him go down to the furnace room and come back with a hot poker! A red, hot poker! I struggled with him and that poker until everyone else woke up and called the police. Never forget it…”

From the hip

2009-05-20T16:30:00.003-04:00

I don’t imagine anyone wants to be in a wheelchair. Indeed, the goal of my spondylolisthesis surgery was to avoid such an existence.

However, after traversing the Animal Kingdom during our recent visit to Disney World, I conceded to being pushed in a wheelchair in Epcot, the Magic Kingdom and Disney’s Hollywood Studios. Being in a wheelchair at Disney has the occasional advantage of scooting to the front of the line at some attractions – something my kids and nieces thought was cool. My sister-in-law was uncomfortable with that particular fringe benefit but, as my niece, Bailie, pointed out -- I’d earned it.

Thing is, I didn’t need the wheelchair because of my back. It was my hip.

In 2006, while my family lived in St. Louis, I visited an orthopedic practice at the renowned Barnes-Jewish Hospital (http://www.barnesjewish.org/orthopedics/ortho.asp) to determine why my right hip was becoming increasingly stiff and achy. Both an orthopedist and a hip specialist confirmed that my spinal fusions were solid and stable. Instead, it was the severe, bone-on-bone arthritis evident in my right hip that was causing my discomfort -- and would more than likely be a source of trouble as I age.

Neither doctor could definitively explain how this had happened. My theory: the slight scoliosis curve that persists in my lower back -- and tilts my pelvis so that my right leg feels shorter than my left -- has caused above-normal wear on the right hip joint.

Bottom line: My medical future includes a hip replacement – or two, or three – depending on how soon I cave. The St. Louis team recommended that I wait until at least age 60 before the first, since current prosthetics only last about 15 years.

In the meantime, I have good hip days and bad hip days. Exercises that stretch and strengthen have helped to reduce pain and increase range of motion, so I’ll press on and hope to keep all my original parts for as long as possible.

Mom

2009-05-12T15:20:00.002-04:00

One of my favorite movie lines is from My Big, Fat, Greek Wedding:

“The man is the head of the house, but the woman is the neck, and she can turn the head any way she wants.”

I had a front row seat watching this same scenario unfold between my parents during my childhood.

Mom was and is the touchstone of our family. She handled the money, managed our household and raised Anthony and me with a gentle strength that was both nurturing and no-nonsense. Mom taught us patience, perseverance, and pride in a job well done. She valued honesty, trustworthiness and proper grammar. And, consequently, all these things are now important to me.

As the family troubleshooter, she approached life’s challenges by developing an action plan. For example, when we found out I would be bedridden during the first three months after my spondylolisthesis surgery, she transformed our dining room into a bedroom so I would be downstairs “where the action is.”

Mom was cool and confident, with a great sense of style – traits I sorely lacked. And, in the random spirit of genetics, my daughter is just like her!

Similarly, aside from physical traits, Mom is nothing like her own mother (more about Grandma in a future post). Instead, she emulated her father’s mother, who lived with my mother’s family during Mom’s childhood.

When I think about great-grandma Chuckerel, I envision kind, gentle hands that taught Mom how to cook and bake like an Italian, and how to love a child like only a mother can. Mom was a stellar student and, just as surely as hair or eye color, these traits will continue to pass from one generation to the next in our family, because of her.

Growing Pains

2009-05-04T14:29:00.003-04:00

I’ve talked a lot about my medical history so far, but my purpose for creating this blog centers around my memoir, Growing Pains (that’s the working title, which I came up with long before the TV show, fyi).

The memoir genre has gotten a bad rep in recent years, thanks to several infamous folks who unwisely chose to fabricate the truth to sell books.

In the May/June 2009 issue of Writer’s Digest, there is an interview featuring the unlikely pairing of Stephen King and Jerry B. Jenkins. In it, Mr. Jenkins makes an observation that sheds some light on the motivation behind the practice of making up stuff for a profit.

“…the definitions of nonfiction and fiction have flip-flopped these days. Nonfiction has to be unbelievable, and fiction has to be believable…”

And so, I wonder – not for the first time -- is my story unbelievable enough?

From the very first draft, what I often refer to as “my back stuff” continues to be a major focus of Growing Pains, but it often take a back seat (no pun intended) to the primary comedy-drama of being a teen stricken by an unrequited infatuation/obsession. It’s also about growing up in the ‘70s in a small, New Jersey town where being Italian-Catholic put you in the “majority.”

But whether this – coupled with my spinal experiences – will be “enough” is yet to be determined. In the meantime, stay tuned for more character introductions, similar to the “Dad” post, and don’t be shy about commenting. I want to know what you think!

Dad

2009-04-25T15:50:00.003-04:00

As my parents age, I find myself in a heightened state of denial. Even though the time will eventually come, I hate to think about being on this planet without Mom and Dad alive and kicking.

The night we returned from Disney World, my father took an unexpected ride in an ambulance after he developed chest pains. Thankfully, it was just his gall bladder.

Whenever Mom or Dad has a health scare, I double my efforts on my memoir – and reflect on who my parents are and the memories we share.

The youngest of seven children born to Italian immigrants in 1931, Dad was the only member of his family to graduate high school. His linear career path led him from a stint in the U.S. Air Force during the Korean Conflict to the police academy. He served our hometown as a police officer for 38 years – even though he was eligible to retire after 25 years – and he adamantly refused to advance through the ranks because it would be “too political.”

The men of Dad’s generation knew how to waltz and jitterbug. They helped women with their coats, held doors open for them and walked closest to the street when escorting a lady on the sidewalk. In their world, there were no shades of gray – just black and white. They never warmed to rock music, voted Republican and hated the sight of boys with hair past their ears.

Being a police officer was central to Dad’s identity. He was of average build, but could summon up an aggressive intimidation that served him well on the job, spurring our town’s “little darlings” to sputter, “Yes, Mr. M.” and “No, sir, Mr. M.” when he questioned them.

However, when he was off-duty and could lower the cynical shield he wielded against the darker element of society, Dad was an amenable sort and well-liked – unless you broke one of his cardinal rules, like not reciprocating a dinner invitation or (God help you!) going against a member of his family. Then, forget-about-it. He’d cut you off – permanently.

Anthony and I grew up hearing Dad tell us three things: 1) “you’re 100% Italian;” 2) “don’t ever touch my gun,” and 3) “what’s said in the house, stays in the house.”

At home, Dad was quick to tease and play with us, and we lived for his invitation to “take a ride.” He introduced us to fishing, Mutual of Omaha's Wild Kingdom and Abbott and Costello.

Dad was the first person to nickname me “Ri.” He taught me how to ride a bike and drive a car, how to protect myself by being aware of my surroundings, and how to love without actually saying the words.

This time it was just Dad’s gall bladder, and that’s good because we’re not done yet, making memories.

The Disney parallel

2009-04-16T17:32:00.003-04:00

I’ve just returned from a Disney trip/cruise. My parents took my family and my brother’s along with them to celebrate their 50th wedding anniversary. It was great! We couldn’t have asked for nicer weather and everyone had a wonderful time.

Being in the Magic Kingdom stirred memories of the 1970s when my parents first took my brother, Anthony, and me there.

My memoir takes place during the ‘70s. And, when I mapped out the dates of my childhood Disney visits, there’s a coincidental parallel.

The first trip was in July 1973. It was a halcyon time for Disney, as well as for me. I was 11 and Anthony was nine, and the Magic Kingdom had only been open a couple of years when my family drove down to Florida from New Jersey in the new Chevy Impala.

In 1974, we took the Auto Train -- in August! Space Mountain was under construction, and Epcot had yet to become a Disney imagineer’s aha! moment. There was no such thing as a park hopper pass, because there was just one park, and your vacation package included a limited number of tickets entitling you to visit rides that were categorized “A” (i.e., Cinderella’s Carousel) through “E” (i.e., It’s a Small World and Pirates of the Caribbean).

Then, in 1975, Disney’s first thrill ride -- Space Mountain -- opened, and I received my spondylolisthesis diagnosis. Things would never be the same.

We returned to Disney in April 1977. The golfball icon of Epcot was under construction, and I was wearing the Milwaukee Brace, unaware I’d be having a second spinal fusion the following year. More than anything, I wanted to ride Space Mountain. Dr. Keim had said I could, but my mother had other plans, as detailed in this excerpt from my memoir:

“Maria… If there’s a sign at Space Mountain that says people with back problems shouldn’t ride, you’re not going on it.” I flushed with angry disappointment. Dr. Keim said I could go on Space Mountain. Mom knew that, but she also knew I wouldn’t argue the point in front of everyone. Well played. Mom thought she was doing what was best for me, so arguing was pointless. Which is why my first Space Mountain ride was years later with my own daughter.

During this latest trip to Disney World it was hard not to be nostalgic about how much things have changed. Now, my children and Anthony’s have the same level of excitement for Space Mountain, Test Track and Tower of Terror that we had for the Haunted Mansion and Pirates of the Caribbean. But, this time, I rode them all.

Talkin’ ‘bout that degeneration

2009-04-02T09:13:00.000-04:00

Now that I’m on the wrong side of 40, it’s difficult to discern which aches and pains are a consequence of my spinal fusions, and which just “are.”

I credit my friend, Mary, for ending my blissful ignorance about flatback syndrome. She also helped me realize the burning sensation I sometimes have mid-thoracic is caused by disc degeneration. You can read more about it at this link from the National Scoliosis Foundation’s site: http://www.scoliosis.org/resources/medicalupdates/pain.php.

I’m a big fan of endorphins. You know. Those wonderful, pain-blocking neurotransmitters that pump through your body when you work up a good sweat. It’s another reason why I’m such an exercise advocate. Many a morning, when I’ve awakened with stiff joints, I press on knowing that relief is just a brief treadmill walk away.

But brisk walking doesn’t alleviate every pain.

Disc degeneration is very common in scoliosis patients, often occurring above and below the fusion site. A few years ago, mine was occurring too often and I went from panic, to misery, to annoyance and, finally, anger. This is a cycle that occurs every few years, prompting me to visit my orthopedist. He’s just a stepping stone, though; my true goal is a prescription for physical therapy to review my daily exercises.

I don’t want to sound like the proverbial “broken record” [and if you’re under 30, you may not even know what a “record” is!], but exercise (of the isometric variety) is an effective means to minimize -- and even eliminate – much of my pain.

Often, it’s just a matter of tweaking what I’m already doing to accommodate the changing needs of my body. Here’s some good info about exercise and maintaining a healthy back: http://www.spine-health.com/treatment/physical-therapy/rehabilitation-and-exercise-a-healthy-back. But my best advice – if you’re in pain -- is to visit your doctor to rule out more serious causes. Then, ask about exercise and request a referral to a reputable physical therapist for an exercise strategy that is designed specifically for you.

Exercise and me

2009-03-25T13:54:00.003-04:00

Mary, my “twisted sister,” and I have found several contradictory instances in our respective experiences with Dr. Keim, and exercise is one of them. Unlike Mary, Dr. Keim sent me to exercise therapy to “help the brace work more effectively.” And, while Dr. Keim encouraged me to “stay active” throughout my care and beyond, he specifically told Mary to limit her activity, even after her surgery.

Since I’d had spondylolisthesis surgery prior to starting brace treatment, the exercise therapy may have had the dual purpose of rehabilitating my muscles. Or maybe Dr. Keim just told me the exercises would help my scoliosis as an enticement to actually do them. Since I approached the idea of exercise with all the enthusiasm of a teenager being coerced out of bed at the crack of dawn on Saturday, he obviously knew his audience.

Regardless, the exercises did help me gain more strength and flexibility to do things I hadn’t even known I was unable to accomplish – like lifting my unbent legs while lying on my back. But, after my last cast was removed, I slacked off. I was young (17), pain-free and focused on making up for the years I’d spent in braces and body casts.

Fast-forward to 1985. I was newly married to my husband, Mark, whose commitment to exercise had been reinforced during his four years of active service in the U.S. Navy. Now he was trying to convert me! I vehemently resisted, using my spinal history as a convenient excuse.

Then the muscle spasms came. They originated in the trapezius muscle and radiated up my neck. They came on quickly and without warning, like a bolt of lightning, and lasted for days. The pain was debilitating and the spasm’s strength made my neck tilt on a diagonal.

Mark took me to see Dr. Keim, the only doctor I trusted to give me an answer. X-rays showed two solid fusions and no skeletal issues, leading Dr. Keim to recommend weight training to strengthen my upper body muscles. Mark was thrilled.

Pain is a powerful motivator so, grudgingly, I learned how to use our weight machine to tone and strengthen. And, as Mark and I started making nightly visits to the homemade ice cream store just around the corner, I started to do aerobics as well.

We planned to start our family after we moved to North Carolina 1990 – plans that I thought would be detoured when I started having unexplained spasms in my lower back. Again, the answer was exercise, targeted to strengthen what is now called one’s “core,” as well as the muscles in my back.

Now, the reluctant convert is an enthusiastic advocate. Over the years, when my body’s needs have changed, so have the exercises I do every day. I’m committed to that hour every morning. It’s sacred time that everyone in the house – even the dog! – knows not to disturb. By taking an active role in the future of my health – as well as ensuring my continued mobility -- I am in control, and that feels pretty good.

Comments and "Following"

2009-03-19T12:20:00.003-04:00

If you're here, reading my blog, I would very much like to know what you think about the information being provided, so please comment! Several folks have said they wanted to comment on this blog, but didn't want to go through the process of registering. Problem solved! I've reset the comment section so that anyone can post a comment -- anonymously if preferred.

Also, I would encourage you to "follow" my blog by clicking on the link to the right. This will NOT load your in-box up with every update to the blog, but if you have a google page, you can customize it to include blogs you follow and you'll be able to see when a new post has been added.

Thanks!

The Milwaukee Brace

2009-03-17T17:36:00.003-04:00

I love the movie, Sixteen Candles. It’s a terrific “coming of age” story. The exception, for me, was Joan Cusack (a.k.a. Geek Girl #1) trying to get a drink at the water fountain while wearing a Milwaukee Brace.

The first time I saw it, I was startled by the fact that scoliosis – or at least a treatment for it – had “made it” into pop culture. But, the stereotypical overtones bothered me. They still do.

But I digress!

My spondylolisthesis had been so severe that my scoliosis was barely a blip on the orthopedic radar screen. Dr. Keim said if my curve didn’t worsen after my first body cast was removed, I’d be in the clear. My spine, however, had alternate plans and, seven months later, I was off to meet my brace man, Mr. Zamosky, who would custom-fit me for a Milwaukee Brace – an exceedingly awkward contraption created in 1946 by Walter P. Blount and Albert Schmidt as an effective alternative to surgery in treating scoliosis.

It was the “alternative to surgery” part that motivated me and my parents to give it try.

These days, doctors are more likely to prescribe a Boston Brace or Charleston Brace for scoliosis, depending on the nature of the curve. Both braces are lighter, less visible and more comfortable for the patient. You can see photos and read about all three at this link: http://www.iscoliosis.com/articles-brace_types.html.

Back in 1976, though, the Milwaukee Brace was the headliner in scoliosis treatment, particularly for “S” curves like mine -- which looked similar to the X-ray at this link: http://en.wikipedia.org/wiki/Scoliosis.

So, into the Milwaukee Brace I went, for 23 hours every day. It was a gamble, whether the brace would cure my scoliosis. No one – not even Dr. Keim – could know for sure if it would pay off.

Then, 2 ½ years later, I had my answer, and my second surgery was scheduled.

Dr. Keim

2009-03-14T16:09:00.000-04:00

Unlike my scoliosis, pain was the symptom signaling the presence of my spondylolisthesis. It was at its worst when I first woke up, as this excerpt from my memoir details:

The cacophony of morning songs from assorted, northern New Jersey birds swirled through the open window with a gentle, early autumn breeze, waking me from a restless night’s sleep.

The pain was waiting for me. It would be sharp, breath-taking and unavoidable.

With a resigned grunt I rolled onto my stomach and slid my body – knees first – toward the hardwood floor. Gripping the headboard, I pulled my 13-year-old self up and grimaced at the familiar, yet surprisingly intense, sensation of an ax grinding into my lower back.

On my feet, but bent at the waist, I walked the length of my room. As my feet shuffled along the cold, dark wood floor, I massaged the muscles of my lower back. Minutes passed and the tight ache subsided, rendering me an upright Homo Sapien, as opposed to a hunched Neanderthal.

After more than a year of this daily ritual, my parents took me to a general practitioner, but he was less than clueless. Subsequent visits to two different orthopedic surgeons were equally frustrating. They knew what was wrong, but wouldn’t tell me -- much less offer a solution. The reason for their silence was yet to be revealed (can you say “fear of malpractice?”).

Enter, Dr. Hugo Keim.

He was slight of build – not much taller than my own 5’ 3” frame – with a thinning hairline and round, wire-rimmed glasses perched before two eyes -- one normal, the other not. We’d heard he was “da man” when it came to adolescent orthopedics, and I will forever credit him for saving me from a wheelchair-bound existence.

Dr. Keim explained that one of my vertebra (the fourth lumbar, aka L-4) had fractured and the two halves were separating, or "slipping." His plan: surgery, post-haste, because the severity of my slippage – measured from Grade I (minor) to Grade IV (severe) – had already progressed to DEFCON 5. There was only a 45% chance that the surgery would be successful. If it wasn’t, I would eventually become paralyzed. If I didn’t have the surgery, same outcome. Nothing like having circumstances dictate a major decision. I took my chances with the surgery.

Dr. Keim corrected my spondylolisthesis with a spinal fusion, taking grafts of bone from my right hip iliac. No instrumentation was used, and I was in a body cast for six months post-op -- bed-ridden for the first three, to enable the fusion to properly heal.

I continued under Dr. Keim’s care for my scoliosis. He’s retired now, but I thank God for his knowledge and expertise, and the impact he had on my life.

Something about Mary

2009-03-13T11:58:00.000-04:00

Every individual is a product of his or her unique life experiences, and my spinal history has played a starring role in how I have become the person I am today. However, I don’t want that part of my life to define me because I’m much more than a spondylolisthesis/scoliosis patient.

I feel a special connection to friends and family who were “there” when I was living through my surgeries, etc. And, as I have made new friends during my lifetime, I have eventually, for one reason or another, shared at least the Reader’s Digest version of my story with them.

That’s how I met Mary.

In 2002, I met Marguerite, a woman in my neighborhood who was a fellow stay-home mom. As we became acquainted, the story of my back came out. She told me about her friend, Mary, who was also from New Jersey and had had scoliosis surgery. Marguerite offered to put Mary and me in touch and, days later, Mary called. We talked for over an hour, comparing medical notes, and soon discovered we’d had surgery in the same hospital – Columbia Presbyterian in New York City – with the same surgeon, Dr. Hugo Keim. Like me, Mary had worn the Milwaukee Brace before her scoliosis surgery and now her daughter, Emily, was in a Boston Brace, hoping to avoid surgery.

We started calling ourselves "twisted sisters." I told Mary about my memoir and she asked to read it. And I was so excited to have someone outside of my family give me feedback about it.

Mary told me about flat-back syndrome. She had it and wondered if I did, too. Unbeknownst to me, I did.

I’ve read many horror stories about aging scoliosis patients. I’m a worrier by nature so tales of agonizing, nonstop pain, and Harrington rods and other hardware breaking through the skin were not giving me a warm-and-fuzzy feeling about my medical future. But, my friendship with Mary has helped me see that every scoliosis patient is different, with their own unique issues. In return, I think I’ve shown her how exercise can help ward off or even prevent potential future problems. So, it's a mutually beneficial situation, and a very special friendship.

Flat-back syndrome

2009-03-12T13:14:00.000-04:00

I had my surgeries during the 1970s. At that time, the Harrington rod was widely used as a “cutting-edge” technology for spinal fusions to correct scoliosis and, consequently, I have a six-inch rod aligning my spine. It’s held up pretty well through the years, with the minor exception of a dislodged hook – the result of a tumble down the stairs just a few years after my scoliosis surgery. The errant hook is a topic of discussion every time I have a chest X-ray. I’ve learned to anticipate the doctor’s efforts to break the news to me gently by politely waving him/her off with an “I know, a hook dislodged from my rod. Now let’s talk about…”

Over time, though, my Harrington rod has contributed to a malady known as flat-back syndrome. Until recently, the medical profession didn’t recognize this condition for what it is – a loss of the spine’s natural curve that enables “normal” folks to walk with a good posture. However, through much effort on the part of aging scoliosis patients and other advocates, orthopedists now acknowledge flat-back syndrome and the problems it creates for those afflicted with it. You can read more about it at this link to the National Scoliosis Foundation’s website: http://www.scoliosis.org/resources/medicalupdates/flatback.php.

I recently had the degree of my flat-back syndrome measured at my orthopedist’s office and was told that a worsening of the condition is NOT inevitable if I can keep my hip and spine muscles flexible and strong. My daily regimen includes stretching and strengthening exercises for that precise purpose, so I’m hopeful.

My flat-back isn’t painful, but it does make me feel like a half-folded lawn chair sometimes. And I am very self-conscious about people noticing – and sometimes commenting! – when I’m not walking “right.” But it is what it is. There are surgical options, but I’ve had several doctors tell me not to bother if I’m not experiencing extreme pain….basically, “if it ain’t broke, don’t fix it!”

Welcome

2009-03-11T17:06:00.000-04:00

This is momentous. My first blog, first post. And I don't have a clue where to begin!

I'm starting to blog to talk about my life after spinal surgery. I've had two operations, one at age 13 (for spondylolisthesis) and the other at age 16 (for scoliosis). The experiences made adolescence that much more challenging, but I survived -- and now I'm writing a memoir about it.

When my last body cast was removed, I thought my back troubles were over. Ah, the naivete of youth! However, I admit I have had a much easier time than many others who have had similar procedures. I look forward to hearing about your experiences with the aforementioned conditions -- or anything else you'd care to share.

Thanks for visiting. TTFN.