limping = walking

\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

“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

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!'

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'

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

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

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"

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

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

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

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

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

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.