Mommy's Superpowers Go...to Charleston, S.C.!

I received a wonderful surprise in my inbox today via Google Alerts:  Terri McDougal, a librarian in Kanawha County, is well aware that in addition to all the kids looking for the next Harry Potter, Diary of a Wimpy Kid and Captain Underpants, there are plenty of children coping with some very difficult life circumstances.  Specifically, Ms. McDougal recommended my book, Where Did Mommy's Superpowers Go? for her patrons facing a serious medical crisis, and looking for a positive resource to communicate this challenge to their children.  I have never met Ms. McDougal and have no idea how my book landed in her hands, but I am so appreciative and grateful for her support of the book!  Not only does she recommend the book to children coping with a seriously ill parent or family member, but spoke specifically to the fact that my book is not specific to any particular disease, so can be helpful to any family going through any type of health crisis.  To read the full article, please click right here:  Library Offers Unconventional Kids' Books

Now I'm going to try and send her a thank-you note! :)

Helping a Brain-Injured Person - Part One

About a month ago I was at our local coffee shop ordering a latte when I noticed a book displayed on the counter.  Pieces Missing: A Family's Journey of Recovery from Traumatic Brain Injury was written by Larry C. Kerpelman, Ph.D., a local author who was a regular customer at the Boston Bean House. I liked that Dr. Kerpelman was also a fellow independently-published author like me, and read that he and his wife, Joanie, lived just minutes away in Acton, my home-town. But what really grabbed my attention was the subject-the story of his wife's traumatic brain-injury and how their family coped with this unexpected crisis. I immediately went home and sent Dr. Kerpelman an email introducing myself, describing the parallels in our stories, and inviting him to coffee. To my delight, he accepted my invitation, and I had the opportunity to meet both him and his wife Joanie, read his book, and hear him speak at a recent book-signing.

I could not put this book down...expertly and articulately written, this memoir reads like a gripping, suspenseful novel. Having been through my own significant health crisis, I could easily identify with Joanie's struggle to turn her frustration and disappointment into positive energy more conducive to her recovery, and was inspired by her determination and tenacity. Pieces Missing is not only the story of a family coming together in the midst of a crisis, but a touching account of a spouse being unexpectedly thrown into the emotional role of caregiver and patient advocate.  Dr. Kerpelman also shines a much-needed light on both sides of our health care system: the selfless, committed and most devoted medical professionals who heal and care for us, and the complicated, corporate infrastructure which often interferes. Most of all, this book is a tender love letter from the author to his wife, a true depiction of the wedding vows "...for better or for worse, in sickness and in health..."; a must-read!

After reading Pieces Missing, I thought of how challenging it must be for young children to be coping with a brain-injured parent or relative. In addition to those who suffer falls, auto or other accidents, there must be countless troops returning home from duty in Iraq and Afghanistan with similar injuries. I invited Dr. Kerpelman to write an article for this newsletter, and I was thrilled when he accepted.  This is Part I of a two-part article:

By Larry C. Kerpelman, author of Pieces Missing: A Family’s Journey of Recovery from a Traumatic Brain Injury (Two Harbors Press, 2011)

On a beautiful December day, as my wife and I were returning from our daily walk to our favorite coffee house, she got tangled in her shoelaces and pitched forward onto the asphalt roadway and lay there scratched, bruised, and bleeding. I took her to the emergency room where we were told that she had suffered a subdural hematoma, a traumatic brain injury (TBI).  With that, she became one of 1.7 million Americans each year who sustain a TBI – that’s one every 18-1/2 seconds. Although I had a passing familiarity with brain injury as part of my professional education, over  the course of three emergency room visits, two hospitalizations, and one brain surgery, I became much more acquainted with brain injury than I ever  expected to be.  The book I wrote about her injury and rehabilitation tells the story of how our marriage and family persevered and survived the biggest crisis of our lives and how the human spirit and love helped our family overcome this major health challenge.  

The National Institute of Neurological Disorders and Stroke defines a traumatic brain injury as one where damage to the brain results from a sudden physical assault on the head. That attack to the head may result in either a closed head injury (such as occurred with actress Natasha Richardson in her fatal skiing accident in 2009) or a penetrating head injury (such as occurred from the gunshot wound suffered in 2011 by Congresswoman Gabrielle Giffords). The NINDS further categorizes the damage to the brain as being either focal, that is, confined to one area of the brain, or diffuse, that is, involving more than one area of the brain. My wife’s injury was a focal, closed head TBI.

A traumatic brain injury can cause all kinds of problems—some temporary, some permanent—due to not only the broken blood vessels and accumulation of fluid in and around the brain the injury has caused, but also the damage to the brain’s neurons. Among these problems are head pain, confusion, lethargy, nausea, sleep disturbances, impaired attention, memory loss, speech and hearing deficits, emotional and behavioral problems, and seizures. Having incurred a moderately severe TBI, over the next several months Joanie experienced all of these problems except seizures, which were averted through the use of anti-seizure medication.  Injuries on the left side of the brain, such as Joanie suffered,  can impair a person’s understanding of language, speaking, verbal memory, logic, sequencing of activities and thought, and control over right-sided body movements. Those on the right side of the brain may cause impairment of vision and spatial sense, visual memory deficits, altered creativity and music perception, loss of “big picture” type of thinking, and decreased control over left-sided body movements. Diffuse brain injuries – those that are scattered throughout both sides of the brain -- can lead to slower thinking, confusion, difficulties in attention and concentration, fatigue, and impaired thinking in all areas. At more severe levels, a TBI may cause a person to lapse into a coma, a vegetative state, or even death. 

So what should you do when you encounter a person who may have suffered a head injury.  If he or she is unconscious, try not to move him or her – that may cause more damage.  Call an ambulance, as the EMTs are equipped to handle someone with a head injury, and the emergency room personnel can diagnose what the injury might be.  If the person is conscious and talking, take him or her immediately to a physician’s office or an emergency room so that they can render advice and a diagnosis.  Do not ignore the problem or have the person “walk it off,” as an undiagnosed brain injury can cause worse problems down the road if not treated.  Once a person is released from treatment or hospitalization for a TBI, he or she is unlikely to be back to their “normal” self without some type of further rehabilitation to restore the “pieces missing” that resulted from the initial assault to the brain tissue.

In the next installment, I will review some of the things you can do to help a brain-injured person’s rehabilitation.

Would you like to use this article for your own website or newsletter?  No problem!  But here's what you must include: 

“Larry C. Kerpelman is author of Pieces Missing: A Family’s Journey of Recovery from a Traumatic Brain Injury (Two Harbors Press, 2011). Dr. Kerpelman is a psychologist and award-winning health care communicator who never would have imagined his work would be inspired by experiences in his own family.  When his wife suffered a brain injury from a freak accident, the journey toward recovery took his family through the maze of a less-than-perfect healthcare system.  The book inspired by this experience provides a moving story of the endurance of the human spirit, combined with insights about brain injury and recovery and pointed questions about how our health care system functions. For more book details, please visit him on www.facebook.com/LarryCKerpelman. If you or someone you know would like to buy Pieces Missing, you may order it from www.LCKerpelman.com , www.Amazon.com, www.BarnesandNoble.com, or your local bookseller.”

Dr. Kerpelman will be speaking at Sargent Memorial Library in Boxborough, MA on January 24, 2012 at 7pm.

 

Fall Happenings

What a gorgeous fall we've been having so far! Except for the recent nor'easter, loss of power, downed tree limbs and rescheduled Halloween festivities, it's hard not to feel energized by the crisp temperatures, bright sunshine and colorful leaves (not to mention an extra hour of sleep recently!). Plus, the Macoun apples are out, our favorite!

While I do require a bit more coffee to get through the dark afternoons, it's a whole lot easier to get up with a bit of light shining through the window in the morning! That caffeine craving is so strong, in fact, I decided to turn my son into my very own Super Grande Venti Turbo Latte:

And he was quite delicious...here's a little optical illusion!

My dear friend Kim Casto, whom I've known for over 13 years, is not only a super-highly trained Pilates guru, successful business owner, and devoted mom, but a generous supporter of her community who not only gives back, but makes it so fun people are lining up to join her! Her annual Pilates for Pink Fundraiser, held at her Pilates studio Bodylines, was a great success, and I was thrilled to be a part of it.

Just last week I was in Dallas, TX to see my friend Ali Brown in action!  I was there to attend Shine, an inspirational conference for women entrepreneurs created by Ali.  This was Ali's third event, and the first time I was able to experience the incredible energy of several hundred driven women focused on achieving success and reaching their business, family, and personal goals--all there for HER!  One of the highlights was meeting Nancy Traversy, the founder of Barefoot Books.  I was surprised to learn that Nancy lives about 15 minutes from me!  I introduced myself and gave her a copy of my book for her to show her editors (keep your fingers and toes crossed!).  But the real show stopper was Ali herself, who led most of the coaching sessions during the 3-day conference. 

 

For the past seven months, this blog and my monthly e-newsletter have been useful resources for families facing any significant health crisis, regardless of diagnosis. My goal was to share articles, tips, links, and other helpful information with anyone dealing with this challenge in the presence of young children, grandchildren, nieces or nephews. In this month's issue (and in the following blog post), I'm excited to welcome my very first guest writer, Larry C. Kerpelman, Ph.D., author of Pieces Missing: A Family's Journey of Recovery from Traumatic Brain Injury. 

In the first of his two articles, you'll learn what a traumatic brain injury is, what its signs and symptoms are, and how to help someone with this critical injury. Not only is this information helpful to those children coping with a brain-injured parent at home, but also for all of us who wish to find the right words to explain to our children how to empathize and interact appropriately and compassionately with anyone we may encounter with a brain injury or other disability. 

This article is also timely as it is Veteran's Day, a day when we must pause and acknowledge those who have voluntarily left their homes and families in order to protect our country.  We won't see another 11-11-11 in our lifetime, so it is a particularly significant day of remembrance and gratitude.  Let's hope that this is the year in which all our troops can finally come home for good.

From "Jonnie" to Jeans: Getting Back in Shape After A Medical Setback

Remember the movie “Groundhog Day” with Bill Murray?  Every day he’d wake up, and he’d be in exactly the same place he’d been the day before.  After several days of realizing his life wasn’t moving forward, he started to remember how the day was going to play out, which people he’d bump into and what events would take place.  Each day he’d find himself stuck in the same situation as the day prior, but once he knew what to expect, he’d choose how to behave and react differently, often with hilarious consequences.

This is how I felt over the course of five years as I recovered from one health crisis, just to be hit with another.  In 2006, I broke my leg.  Up until that point I had been working hard for three years after Jason was born to get rid of the baby weight, and had finally reached my goal.  I enjoyed running a few miles on the treadmill several times per week when suddenly I found myself laid up in a cast for about 12 weeks.   Once I was able to start physical therapy, I discovered that I had completely lost my former levels of strength, stamina and muscle tone (don’t even get me started on what my leg looked like compared to the other one when the cast came off).  Not only did I have to regain the function, balance, strength and flexibility in my injured leg, but I had to build up my cardiovascular fitness and lower body strength from the very beginning.

I was surprised at how quickly it all came back.  I approached my physical therapy with the same commitment and focus I used to shed the pregnancy pounds, and did the exercises religiously.  In about three months’ time I was able to accompany Steve on a business trip to London and Paris.  We brought Jason with us, and I easily walked everywhere with him and a stroller in tow during that two week excursion, glad that I had been so consistent with my rehab.

Less than six months later, I was diagnosed with amyloidosis, and told I’d need high-dose chemotherapy followed by a bone marrow transplant.  I knew the aggressive treatment would bring my current workout routine to an abrupt halt for four to eight weeks, which would really set me back, and I would definitely need to ease back into exercise gradually over the course of several months afterward.  During the treatment, I was even more sedentary than I’d been with my broken leg, but now in addition to muscle atrophy and a significant decline in my cardiovascular fitness, the chemo had wiped out all of my blood cells, including red cells (which carry oxygen to your body), leaving me breathless just after climbing a dozen stairs.  My bone marrow was busy producing a whole new immune system, which required what little energy I did have.  Not only were my muscles out of shape, but I was profoundly fatigued from the toll the treatment had taken on my body.  I could accept the weakness and lack of energy, but the medications I continued to take exacerbated the fluid retention and weight gain caused by the amyloidosis, making me feel even more uncomfortable and self-conscious about my heavier figure. 

Nonetheless, as soon as I was cleared by my doctors to work out at the gym, I signed up for a few sessions with a personal trainer, since I was a bit hesitant to exercise on my own.  I scheduled a Fitness Assessment, which confirmed that I had lost a significant amount of strength, flexibility, endurance, stamina and muscle.  I wasn’t thrilled with this news, but had a starting point and was able to track my progress.

A little more than six months later, I was feeling stronger, firmer and more energetic.  I no longer needed a trainer to supervise me, and I was working out almost as often as before I’d had chemo.  A second Fitness Assessment showed that I had made measurable improvements across the board, and I was looking forward to setting some new goals.  My enthusiasm was crushed when I found out I would need to have a second bone marrow transplant, repeating the entire protocol a second time.  Another huge wallop of chemo, wiping out the new immune system my body had worked so hard to build, would bring me right back to Square One.  I’d have to start from scratch all over again. 

I had my second stem cell transplant in June, and returned home within four weeks with the same weakness, fatigue and extra pounds of fluid caused by the medication.  The yo-yoing back and forth was starting to wear on me, and my mood would take a nosedive whenever my clothes didn’t fit.  For the fourth time since Jason was born, I went from running on the treadmill to walking.  I traded the 15 lb. dumbbells for three pounders, and switched from Spinning to yoga.  I listened to my body; some days I made it to the gym, and some days I had to recover.  I did what I could and never pushed myself beyond what I could do comfortably.  By the fall I was back in Cardio Kickboxing, proud of the quicker recovery I seemed to have had this time around.

Convinced my medical issues were history, I was excited to put the past behind me and focus on the future as a healthy, fit, active mom to Jason, who had just turned five.  He was now in kindergarten and had just begun taking Taekwondo classes.  We both thought it was pretty cool that I was familiar with some of the kicks and punches he was learning, and Jason was quite impressed when I was able to show him a roundhouse kick.

Shortly after my martial arts performance, I began to feel pain in both of my hips.  I figured I had pulled a hip flexor showing off to Jason—but *both* of them?!  I took it easy on the kickboxing and running and kept my workouts low impact, but over the course of the next couple of months, the pain seemed to grow worse, and more intense as the day wore on, to the point where it would be difficult for me to climb the stairs at night.

Having had so much chemotherapy over the past year, combined with the fact that it had put my body into menopause, I assumed that perhaps the toxicity of the treatment had weakened my joints or thinned my bones; perhaps this was early arthritis of some kind.  It didn’t seem too much of a stretch that if my body had been through the wringer, maybe it was aging at some accelerated rate.

I headed to the doctor, who scheduled an X-ray.  Convinced this was a cartilage or soft tissue problem rather than a bone condition, I asked for an MRI.  She obliged me and ran both tests shortly before Christmas, informing me that I should receive the results about a week later.

On the afternoon of New Year’s Eve, I was driving white-knuckled through an afternoon blizzard.  The snow was coming down heavy, the roads were getting slippery, visibility was getting worse, and Jason was with me in his car seat.  When my cell phone rang, I could see it was my doctor, and not wanting to miss the call, I answered it.  My test results were in.  I told him I couldn’t talk and drive at the same time, and asked to call him back once I’d returned home.

When I finally spoke to my doctor, I knew I would not have been able to drive in the dangerous weather and hear the news at the same time.  While my X-ray was normal, the MRI showed that I had areas of dead bone in both of my femoral heads.  This was a condition called avascular necrosis, or AVN, which had occurred when the steroid medications involved in my treatment had interrupted the normal blood flow to my hips.  Without proper blood supply, the bone had died, leaving dead tissue inside the bone.  The pain and stiffness I was feeling was a result of the swelling and accumulation of fluid to this injured area, affecting my range of motion.  This was a degenerative condition which over time would lead to the “collapse”, or flattening, of the femoral head, making it impossible for it to move freely and comfortably in the socket, ultimately requiring a hip replacement.  Unfortunately, my doctor was unable to tell me definitively if or when this would in fact happen, but there was certainly not much I could do other than try and reduce the weight-bearing load on my hips, and take medication for the pain.  I could use crutches; keep off my feet as much as possible.  All I could think was:  Does this prescription come with a nanny?!  Because I have a kindergartener at home!

That was probably the worse New Year’s Eve ever, improved only for the company of some close, long-time friends who thankfully came over for dinner and offered their support and encouragement.  Rather than kicking off the New Year with the typical resolutions to eat better and exercise more, 2009 started off with the arduous task of researching the best orthopedic surgeons in Boston, to find out what I needed to do next. 

Instead of the usual excitement preceding my 40^th birthday, I spent the next several months meeting with specialists, taking pain-killers 24/7, walking with crutches, and watching my workouts dwindle to a short bout on the recumbent bike and the upper-body cycle.  Once again I was lucky to live near Boston, as the chair of the orthopedics department had been recognized as one of the city’s best doctors in Boston Magazine, and was one of the few surgeons in the country knowledgeable about AVN, but the damage in my hips was too extensive to benefit from his cutting-edge stem cell surgery.  It seemed my range of motion decreased with each passing week; I was taking medication first thing in the morning and right through the night.  This was no way to live at the age of 40 with a six year-old.  Just six months after that New Year’s Eve diagnosis, I was calling Dr. Einhorn begging him to replace my hips.

I had my left hip replaced in September of 2009, and the right hip done five weeks later.  The only exercise I was doing for the 10 weeks post-operatively was physical therapy.  Whereas most people would be afraid of gaining weight sidelined for this long, the opposite happened to me.  My activity was so low, and what little I was doing was so painful, that my appetite was next to nothing.  I really had to be starving to drag myself to get something to eat.  But it wasn’t just fat I was losing, it was muscle.  The pendulum had swung to the other extreme and now I was much thinner than normal (but not in a good way).

For what I hoped was the last time, I was committed to my physical therapy and treated my rehab like a full-time job.  By February of 2010 I was walking without a cane, and able to carry a small bag—a HUGE accomplishment!  As my PT tapered off, I knew it was time to make the transition back to the gym, and build my muscle mass back up.  Again I invested in a trainer to get me started, who concentrated on functional exercises and core strength.  I also began Pilates for the first time which increased my strength, range of motion, and flexibility.  Now, two years post-replacement, I still do Pilates, and have resumed all of my favorite workouts (except for running):  Spinning, cardio, strength-training.  I can move so naturally that people who don’t know me have no idea when they look at me that I have two prosthetic hips.

If you’re an active person, being incapacitated by a significant medical injury, treatment, or surgery can really do a number on you, not just physically, but mentally and emotionally as well.  As women, we are notoriously hard on ourselves, and feel enormous pressure to look trim and healthy from a very early age.  As a fitness professional, I enjoyed working out, but also felt an obligation to “look the part”.  It’s not easy, but you can cope with the missed workouts, weight gain and loss of fitness during a health crisis.  Here are some suggestions:

1.)    Pick a mantra:  I like “This too shall pass.”  Choose an uplifting phrase that you find comforting.  Repeating a positive affirmation can help ease the frustration.

2.)    Look within:  After so many years preoccupied with how I looked on the outside, I shifted my focus to taking better care of the inside of my body.  I considered a healthy diet, sleep, and stress reduction just as important as medication in my recovery.  Even if I wasn’t happy with how I looked in the mirror, I made sure I was working on improving my inner health as well.

3.)    Visualize:  Research has shown that elite athletes who visualize their events actually cause their muscle fibers to fire as if they were actually physically competing.  Sitting quietly in a relaxed state and visualizing yourself performing your favorite activities with health and vigor can have a pronounced, beneficial effect on your recovery.  I would listen to meditative “spa” music and imagine myself back at the gym running on the treadmill or in my favorite classes.

4.)    The mind/body connection:  Along the same lines, there is a strong connection between the mind and body.  Suppose you have a nightmare in which you are running away from an attacker.  You might wake up in a sweaty, breathless panic, your pulse racing and your body shaking with fear.  But you’re safe in your bed.  It was just a dream in your mind, but your body doesn’t know the difference, and responds appropriately as if it were reality.  The same is true with visualization:  the more you can practice visualizing being healthy and active again, the more your body can “believe” and move towards healing.

5.)    Go back to basics:  Don’t try and pick up where you left off; invest in a personal trainer, workout DVD's, or at the very least, work out with a buddy.  Sometimes medications or a long hiatus from exercise can cause dizziness or extreme fatigue, and you want to be on the safe side.

6.)  Be a germophobe:  Gyms are notorious for spreading germs, no matter how clean they are.  After chemotherapy, your compromised immune system may not be able to fight off the bugs as well as before.  Bring your own sweat towel, carry hand sanitizer with you, and use disinfectant spray or wipes (if available) to clean the equipment *before* and after you use it.  If the person on the elliptical next to you sounds sick, move to another machine!

7.)    Get a baseline:  If you belong to a gym, ask for a fitness assessment, which is often a free service.  You may be pleasantly surprised that you haven’t lost ground in every area; perhaps your flexibility is still great or your body fat is still in a healthy range.  The results will show you where you need to focus most.  If you prefer to test yourself at home, here's a step-by-step assessment you can do on your own.

8.)    Be flexible:  After treatment or surgery, you may not be able to return to your favorite pastimes.  While this can be initially discouraging, make an effort to “change the channel” (remember that article from last month?) and try and view this challenge as an opportunity to try something new.  I had always wanted to try Pilates, but didn’t have the time.  Each week I’m amazed at what an incredible workout it is—why did I wait so long?!  I used to love running, but cannot do it anymore, so I do Spinning, or intervals on the cardio machines for a more intense workout.

9.)    Take your time:  Don’t rush to do too much, too fast.  There will be days you feel so good that it will be tempting to push a little too hard, or workout a bit too long.  It would be a shame to have a setback after having been through so much.  Here’s another mantra for you, one that I still remind myself of on a daily basis:

“Slow down…and everything you’re chasing will come around to catch you.”

Thank you, Beacon Villager!

I was just taking a short break from some household chores on this dreary, dark, rainy day to read our local community paper, the Beacon Villager.  I don't have to leave to pick up Jason from school for another 30 minutes, so I turned on my favorite soap and opened the paper....and there on page 2 was a great article recognizing the recent Silver Mom's Choice Award given to WDMSG?!  To see the article in its entirety, click here.  A nice pick-me-up on a gloomy day!

10 Tips to Taming Your Inner Control Freak

After receiving a serious diagnosis, it is natural to feel fear, shock, sadness and anger.  If the news comes out of the blue, it’s common to feel confusion, disbelief, even denial.  But in addition to these emotions, it’s not unusual to feel a loss of control.  All of a sudden, life as you know it has totally changed.  Everything dear to you—your family, home and job--has immediately taken a back seat to this new and unwanted challenge, and regaining your health becomes top priority. 

As parents, this news can be even more difficult.  What do we tell the kids?  How and when do we tell them…if we tell them at all?  How long will I be out of work?  Will I be able to return and perform at the same level?  How will this health crisis affect the family finances?  What toll will this take on my partner?  As mothers, we wonder who can possibly fill our shoes, doing all the things we do—the way we like to do them?  What havoc will ensue if we relinquish control to others?  And how long is this all going to take?!  We have places to go/things to do/people to see!  All of these questions can lead to a sense of frustration and helplessness, or the feeling that we are no longer “in charge” of our bodies.  There is no reasonable explanation why people who eat well, exercise regularly, drink moderately, avoid smoking, laugh often and have no family history of disease are unexpectedly diagnosed with a life-threatening illness.  It is certainly not fair.  If all of that effort couldn’t prevent a major health crisis, it can be even harder to believe we can influence the outcome.  The lack of control over one’s body, compounded by having to relinquish control to others can be extremely unnerving, particularly for parents, who are accustomed to being in charge of their children, their households, and their jobs.

There is an expression I like which helped me tremendously when I would feel like giving up:  “It’s not the cards you’re dealt; it’s how you play the game.”  I realized that I couldn’t worry about how crappy my diagnosis was, how much treatment was going to suck, how pissed off I was that I was facing more surgeries, or how awkward I felt accepting help from my friends when they had families of their own.  It wasn’t easy watching Steve do all the things I couldn’t do, after working all day.  And he would tell you that I was at my worst, naggiest, whiniest self when I had to give up control.  These were the “cards” I was dealt, and I chose to “play the game” by making a conscious effort to find ways I could be more in control, however small.  In doing so, I felt empowered and less victimized by my disease.  I remembered the words of the Serenity Prayer I had heard years ago:  “God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.”  Maybe I had to accept my diagnosis and all that it entailed, but I didn’t have to take it lying down.  Here are some tips that worked for me:

1.)  Take charge:  Before I started treatment, I took the time to create a manual for Jason and the house.  I printed off schedules, important phone numbers, and instructions for my mother in law, and placed everything in a 3-ring binder labeled “Nana Sue Control Center”.  Need I say more?!  Showing others the way you like things done not only makes you feel better, but can be helpful to the people assisting you.

2.)  Be proactive:  I buzzed off my hair into a cool “Rocker Chick” cut before it fell out in messy clumps.  If treatment will alter your weight, pick out a couple new outfits ahead of time that will make you feel good.

3.)  Prepare and plan:  I stocked the freezer well in advance, to supplement meals made by others as much as possible.  Even though Steve had to cook and clean up, I could still plan the menu and let him know what to defrost (I joke that I was still the Brains Behind the Operation!).  Don’t worry if you don’t cook—Trader Joe’s has lots of great frozen items!

4.)  Visualize the finish line:  I created Vision Boards—huge collages of pictures and words that I found inspiring and kept me focused on ultimately getting better and putting this whole experience behind me.  If you’re not crafty, you can rip out a few motivational images and stash them in a box, or use a photo album.  The process takes your attention off the present (which might be crappy) and redirects it to the future.

5.)  Chill out:  I listened to guided imagery CD’s almost every night to relax, decompress, reduce pain and visualize my recovery.  Choose whatever method works for you; a little spa music, meditation, yoga…just a few minutes a day can relieve stress, which is very beneficial for anyone, not just patients.  Share your methods with your caregiver—they need to take a break too!

6.)  Looking good helps you feel good:  I put on a little bit of make-up every single day during treatment, just enough to make me feel put together.  Feel free to streamline your typical routine, but even a small amount of “upkeep” can do wonders for your mood.

7.)  Pay it forward:  I contacted newspapers, magazines, TV shows and news programs in an effort to create more awareness of my rare disease.  The Discovery Channel was the only network that responded, and featured my story on an episode of Mystery Diagnosis.  Our local paper ran a story as well.  In fact, I still have people contacting me by phone or email after watching repeats of that particular episode (someone just texted me recently that they saw it on YouTube!).  Whether you participate in a walk, contribute to a fundraiser, or start a foundation, there are endless ways to “give back”, and have some influence on another patient’s experience.

8.)  Make connections:  I stayed connected with support groups.  If you don’t feel up to attending in person, you can “stay in the loop” via email digests.  Online groups are a great alternative to meetings if you are more of a private person.  Whether you are looking for information, or wish to share your own experience to help others, support groups are a win-win for everyone.

9.)  Balance business with pleasure:  Steve and I make it a point to visit a favorite restaurant on the days I have doctor appointments, turning an otherwise gloomy day into an opportunity.  Regular check-ups become less stressful, and we actually look forward to the time together.  Set aside time to pop into a nearby coffee shop or browse a special store so that you go home on a high note. 

10.) Bring it:  Refuse to let your disease have control over you--go into this journey with both fists flying!  Show it that it chose to mess with the wrong person.  You are the only one who can control your mindset--make it feisty!

Many thanks to the Mom's Choice Awards!

The month of August really flew by…mostly because we were literally flying in and out of town!  After a relaxing week in Maine, my family and I unloaded, repacked and set off in different directions—the boys headed down to the Cape to spend the weekend with friends while I….wait for it…jetted off to Paris, France!  With a lot of help from Amex Rewards, my good friend Dafna, the folks at work and Steve’s blessing, I was able to accept my friend Ali’s impromptu invitation to join her in Paris to celebrate her 40^th birthday!  While Jason hit the beach with his friends to search for hermit crabs, Ali and I toured, shopped and ate our way through the City of Lights for four days that flew by way too fast.

Ali and I stayed at an adorable boutique hotel, Hotel 7 Eiffel, which was just a short walk away from L'Ecole Militaire, and the beautiful pont Alexandre III.  We kicked off our first evening in Paris with a walk to the Eiffel Tower and a stunning ride on the Seine via the Bateaux Mouches.  Over the weekend, in between one amazing meal after another, we walked for miles taking in the sights, shopping, and enjoying some long overdue quality time together.

Just as we were recovering from a fun-filled summer and getting packed up to head back to school, I received some terrific news.  WDMSG? earned a Silver Mom’s Choice Award!  I was thrilled to receive this honor, and grateful the book was recognized among the best in family-friendly media, products and services.  For more on the Mom’s Choice Awards, the judges’ panel, and where to find Mom’s Choice products for your family, just click on the links.

We wrapped up the season with a Lowell Spinners game (they beat the Staten Island Yankees in one extra inning!), followed by Jason’s first trip to Fenway Park to see the Red Sox play.  The weather was incredible both nights, making it hard to believe that the first day of school was on August 30.  The lazy days of summer may have come to an end, but we can still enjoy the lingering warmth and sunshine as we kick off the school year!