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!

Change the Channel--Cultivating an Attitude of Gratitude

What could possibly be good about learning that you have a rare, life-threatening disease?  What’s the upside of hearing that you need aggressive treatment as soon as possible, or you may not see your child’s next birthday?  Where’s the “gift” people speak of when you experience something this earth-shattering?  And how exactly am I supposed to appreciate the experience the Universe has bestowed upon me?

When I was diagnosed with amyloidosis, trust me, I was less than thrilled.  I had a son who was barely four years old; I was about to celebrate my 10^th wedding anniversary.  I was terrified of what chemotherapy would be like, and even more afraid of what would happen if treatment didn’t work.  I cried for days, wondering why this was happening to me, what I’d done to deserve this, and how my family and I would get through the experience.

Up until then I’d been the kind of person that believes everything happens for a reason.  During the years we struggled with infertility, I convinced myself our baby would arrive when the time was right, and when Jason was finally born, I felt all those unsuccessful cycles were necessary in order to have him.  When I broke my leg in 2006 and was laid up in a cast for 12 weeks, I figured the Universe was trying to send me a message loud and clear to slow down, stop trying to do so much, and give more undivided attention to my family.  But when I learned that my own body was turning against itself, despite years of being a healthy eater, vitamin-popper, fitness nut, and nonsmoker, I simply could not understand how or why something this crappy could happen to me.  Suddenly, my stomach would churn at the phrase, “everything happens for a reason”.  Really?!  It just didn’t seem fair.

Then in my mailbox one day I received a package from an anonymous sender (who has since been identified!).  It was a DVD called The Secret, and after watching it, my outlook turned around immediately.  It was my first introduction to The Law of Attraction, and I was so inspired by its powerful message, that I wanted to learn all I could about how to use it to help me get healthy again.  After watching The Secret several times, I read the book by the same title, as well as several others on the topic, plus a couple of great DVD’s (What the Bleep Do We Know, and You Can Heal Your Life by Louise Hay).

The primary message that resonated with me was that my energy needed to be focused on what I wanted, not what I didn’t.  Whatever thoughts and emotions I was having would only create more of those thoughts and emotions.  So if I was feeling angry, miserable and helpless, I would continue to manifest those feelings and results in my life.  I certainly did not want to create more misery and negativity, quite the opposite.  I wanted to recover and heal, and come through this a better person.  Staying home all day in my pajamas waiting to learn the reason for my diagnosis was no longer a conducive way to spend my energy; I certainly didn’t want more of that.  Yet I was also well aware that positive thinking was no guarantee of remission either, but it certainly couldn’t hurt.  At the time, I had no idea what lay ahead for me, but decided from that point forward whenever a negative thought or emotion occurred, to “change the channel” to a more optimistic way of thinking.  Since I didn’t know (or care) what the reason was for my diagnosis, I decided instead to cultivate an attitude of gratitude, and try and find things to be thankful for along the way.  While I knew that positive thinking was no replacement for traditional medicine, I considered optimism to be an essential part of my healing and recovery, and necessary for my medications to be as effective as possible.

I started by redirecting my focus to what was working in my life.  I began to make a conscious effort to put a positive spin on every negative thought that entered my mind.  I was thankful that a treatment existed for my disease, and that I lived near the leading facility in the world for amyloidosis.  I felt incredibly grateful for the support of my family, and the incredible circle of friends who selflessly rallied around me.  I appreciated the commitment and expertise of the doctors doing their best to make me well again.  And most of all, I thanked my lucky stars to have a loving husband who I could depend on, standing by my side the entire time.

When I returned home after several weeks in treatment, I was so happy to be near Jason again.  I was still very weak and limited physically, but instead of moping about what I couldn’t do with him, I redirected my focus on what I could do.  I enjoyed being able to sit and play games with him, snuggle under blankets for popcorn and a movie, give him a bath, read stories at bedtime.  I soon realized that I still had so much to be thankful for, and quickly shifting my focus from a negative to a positive thought truly made a distinct difference in how I felt.

Despite my commitment to the glass being half full, my spirit was still being tested.  Six months after my first bone marrow transplant, I learned I’d have to do it all over again.  Once I recovered from my second treatment, I found out the medications used had caused my hips to deteriorate.  Six months later I realized I needed to replace both of my hips, which led to two major surgeries followed by months of rehab.  However, my practice of “changing the channel” has become a habit, almost second nature.  I’ve also come to see that perhaps there was a reason for this entire experience after all.  I’ve been able to help and support other patients newly diagnosed with amyloidosis, and increase awareness of this disease through newspaper articles and TV appearances.  I’ve created a unique resource to help children cope with a critically ill family member, regardless of diagnosis.  And even though I’ll need to be tested every year for the rest of my life in order to see if the disease returns, I’ve learned that the real “gift” of this journey was an attitude of gratitude to last a lifetime.  This is truly a gift I’ll pass on to Jason, and one I hope will be handed down to his own children.

Thank you, Boston Parents' Paper!

If you have kids, then you know that Boston Parents' Paper is required reading!  I've been a regular reader for the past 8 years, as it is a wealth of information and family resources for $0!  This month, WDMSG? received a lovely review on page 14.  To see it, click here, then click on NEW!  Our Current Edition.  Need to find some fun ways to spend the next few weeks before school starts?  Don't forget to check out their day-by-day monthly calendar on page 36 for some great ideas to savor the rest of the summer!

On the Bookshelf | Brandeis Magazine

As a graduate of Brandeis University, I was so proud to see "Where Did Mommy's Superpowers Go?" mentioned in the recent alumni magazine!  Check out the review here:

On the Bookshelf Brandeis Magazine

(and yes, if you MUST know, I graduated 20 years ago!  EEK!)

5 Tips to Care for the Caregivers

A few weeks ago I had my annual evaluation at Boston Medical Center, which involves three days of tests and consultations with the medical team.  Steve accompanied me each day, just as he has done every year since my initial diagnosis in 2007.  In fact, it seems we’ve been “doing this drill” for so long that we’ve found ways to make it enjoyable and as strange as it sounds, we actually look forward to the time together! 

Every year, no matter how good I feel, I can’t help but feel a bit apprehensive; no patient wants to learn that remission has turned to relapse.  While I can’t keep this thought from entering my mind, I do choose not to dwell on it, and Steve is great at helping me stay positive when I start to slip.  Fortunately, this year’s results were excellent, and I attribute much of my healing and recovery to Steve’s unwavering strength and support over the years. 

When I broke my leg in 2006, not only did I need help at home but I couldn’t drive.  Steve picked up the slack (in addition to his long work hours) without missing a beat.  During both stem cell transplants in 2007 and 2008, he was amazing.  Every morning he packed a bag of food for us to take to the clinic, and he was in charge of dinner most nights (he even gave up sushi while I had to adhere to a neutropenic diet—now *that’s* devotion!).  He did the food shopping, errands, covered my catheter site before every shower, kept all of my prescription bottles organized and made sure I got all of the correct medication at the right time four times/day…all while continuing to work remotely.  He was by my side every minute, which was lucky for me when I passed out in the BMC parking garage…he caught me before I hit the concrete.  Steve never lost his sense of humor and always found a way to make me laugh even at my worst moments (I think Steve must have played with every item and inflated every surgical glove in every exam room I was in).  He allowed me to whine when I was feeling miserable, cry when I needed to, complain when I felt like it, and vent my frustration.  Not only did I have a lot of extra weight and swelling due to the edema, but the steroids put weight on me as well, and combined with the loss of my hair, I never felt more unattractive in my life.  Steve never flinched at my changed appearance, and was just as cuddly and affectionate as usual.  At my worst moments, Steve continued to make me feel as beautiful as ever, and tell me how much he loved me.  Even at my lowest points, Steve kept my spirits up, reassuring me that this would all soon be behind me.

Just when we thought the worst was over, I found out the medications used in my treatments had caused a degenerative bone condition in my hips.  In 2009 as my hips got worse, Steve once again had to pitch in more, and in addition to his own busy work schedule, had to take on more of my responsibilities with the house and Jason.  That year I had a total of four hip surgeries; two in an effort to preserve my hips, and when those failed, two more surgeries to replace them both.  Steve spent so much time at Boston Medical Center that one day in the elevator he said hello to a familiar nurse, and she replied, “Hi, nice to see you!  Remind me, what department do you work in?”  Steve knew then that the two of us had spent WAY too much time in the hospital!

I spent the early part of 2010 recovering from having both hips replaced.  As my mobility improved, I was able to take more tasks off of Steve’s plate, and he was gradually relieved of his duties.  Now our lives are about as close to normal as they’ve been in a long time, and I attribute much of that to Steve’s commitment and devotion not just to me, but our marriage and family. 

I was incredibly lucky to have such a supportive partner during this challenging time, especially because I know for a fact that there were many times when I was not the easiest patient!  I was emotional, depressed, frustrated and impatient.  It was very hard for me to see Steve have to do my jobs in addition to his own, and I often felt guilty that he was “stuck” with the extra burden of caring for me.  But Steve never complained (although he may have told me to “put a sock in it” on more than one occasion), or lost his sense of humor (“no Steve, I do *not* need a sponge bath!”), and never let the circumstances take away from quality time with Jason.  I am still in awe of how he balanced it all so well.

Whether your primary caregiver is a spouse, a sibling, a parent, an adult child, or a team of friends, it is never easy to be on the receiving end of so much help, especially if you’re a mom--*we’re* supposed to be the nurturers and caregivers for everyone else!  Accepting the help is like putting your oxygen mask on first—in order to heal, you need to put your health on the top of the priority list.  Caregivers complement our treatment protocols; consider all that extra help an essential prescribed medication necessary for optimal healing.  Without our caregivers’ generous and selfless support, how can we expect our medication to have maximum effect?  Their care and companionship helps our bodies and minds relax and become more receptive to treatment.  While you’re working on getting better, here are a few ways you can honor the caregivers in your life:

1.)    Remember to check in:  As the patient, everyone will constantly be asking “How are you?  How are you feeling?”  Once you’ve answered, suggest the person check in with your caregiver and ask them how they are doing, and if there’s anything they may need.

2.)    Give them the tools:  If your caregiver is doing a lot of cooking they may not be used to, provide them with some easy recipes or suggestions.  I had a lot of time to rest and read, so I flagged simple recipes in cookbooks, or tore them out of magazines.  If I had the energy, I made out the shopping list for Steve, so all he needed to do was follow directions.  Create lists of essential phone numbers so your caregivers have information in one place.

3.)    Keep a list:  If you have friends assisting you, keep track of who is doing what (perhaps one friend is picking your kids up at school, while another one is doing your grocery shopping, and a third is accompanying you to treatment).  When you are well enough, you can write thank you notes and find ways to reciprocate the favor.

4.)    Give ‘em a break:  This is SO important—full-time caregivers need a well-deserved respite to recharge and rejuvenate.  Make sure that you both agree on how and when your caregiver can get away and have some free time.  Since I needed someone with me at all times during my transplant, my parents would come into Boston on the weekends so that Steve could go home, spend time with Jason, sleep in, and go out for a beer with the guys.  I was happy, he was happy, and my parents enjoyed a “weekend sleepover” in the city with me.

5.)    Find support:  There are plenty of support groups for patients, both in the form of meetings as well as online email groups, but caregivers can benefit from their own helpful network.  Check with your medical facility for support groups and services specifically for caregivers.  Here your spouse, partner, family member, adult child or friends can openly communicate their feelings about what’s happening, share any struggles they may be facing, and hear how other caregivers are coping.

July Baystate Parent Magazine

Whether I'm working or just working out, every time I walk into Global Fitness Center in Stow, there's a stack of Baystateparent Magazine right by the door.  Every month I love checking out the great articles which cover various parenting issues, health/nutrition topics, current local events, newsworthy moms and tons of resources for things to do with the kids.  Not to mention there's always an *adorable* little cover "model" on the front cover!  This morning I picked up my new July issue and there on page 13 was the color cover of my book with a nice little mention!  I was honored to be recognized by BSP, voted Best Parenting Publication in North America for 5 years.
So if you followed the link listed in BSP and are visiting my blog for the first time, welcome!  You might want to start at the bottom (beginning) to learn a bit more about me, my story, and how WDMSG? came to be written.  The book is based on my own personal experience when I was diagnosed with a serious health crisis right before my son's 4th birthday.  Because my particular disease was quite rare, there were no children's books out there for me.  In order to prepare my son for what was happening, and minimize his fear and worry, I created my own story, comparing myself to a weakened superhero to explain why I was sick, and why I had to leave home for a while for treatment.  My truthful, but upbeat story worked so well with Jason, and he understood it so clearly, that I decided to write a non-disease specific book for other children coping with a critically ill parent or family member.  Actually, WDMSG? is especially useful for families who are diagnosed with those less-known diseases which receive little awareness, attention or recognition, and therefore have very few resources available.
If you or someone you know would like a copy of WDMSG?, you can get a "sneak peek" inside the book at www.tinyurl.com/buymommypower.  For those of you who live in the Acton/Maynard/Concord/Sudbury area, the book is available at Willow Books and Cafe in Acton, as well as at the Acton, Maynard, and Sudbury branches of The Paper Store.
Please feel free to share your thoughts, comments and feedback, I welcome any critique you have to share!  To see what people have been saying about the book, please visit the book's page on Amazon and BarnesandNoble.com.  Whether you wish to give the book 1 or 5 stars, all reviews are incredibly valuable in helping the book "pop up" when people are searching for a positive, upbeat story to help explain a grown-up's serious illness to young children, which does not specify any particular disease, diagnosis or treatment.  I hope to hear from you!
And if you haven't already, be sure and pick up your own FREE copy of Baystateparent Magazine!