You Can’t Catch Me, I’m the Gingerbread Man…

Holiday baking is a BIG DEAL in our house. We easily go through twenty-plus pounds of flour with the tradition that anyone who steps through our front door leaves with a plate of homemade cookies.

Recently, a friend who is lactose intolerant has inspired a fun project of researching dairy free recipes. It’s interesting to me that many of these recipes have their origins in the Depression or World War II era, when rationing demanded some pretty creative substitutions for butter, milk and cream. I’ll only try recipes that use common, readily available ingredients – no tofu or sunflower butter (whatever that is), thank you very much. So far, every one of those recipes has been a hit for dairy tolerant and intolerant guests.

As fall has turned to winter, I wondered whether any of my traditional Christmas recipes could be adapted to dairy free. Nope, not a chance. The most popular one is an almond cookie that is basically a bowlful of butter, a few eggs, some sugar and the scantest amount of flour to hold the dough together. For most of us, that’s a temporary spike in cholesterol until we hit the treadmill New Year’s Day. For my friend, well I think it could kill her. So back to Google I went, and found a great gingerbread biscotti recipe at allrecipes.com that’s both festive and dairy free.

My husband, also, has to watch his sugar intake and every year for his Christmas-time birthday I bake a carrot cake recipe my mother passed along when we were newlyweds. So I’m sharing these recipes here, along with an invitation to contribute your own stories and recipes you’ve discovered so loved ones with health issues can share in holiday traditions.

Salud!

(ETA: White flour, or half and half of white and whole wheat, can be substituted. Using all white flour gives a more traditional biscottie taste.)

The Gingerbread Biscotti recipe can be found here:
http://allrecipes.com/Recipe/Gingerbread-Biscotti/Detail.aspx

Gingerbread Biscotti

1/3 cup vegetable oil

1 cup white sugar

3 eggs

1/4 cup molasses

2 1/4 cups all-purpose flour

1 cup whole wheat flour

1 tablespoon baking powder

1 1/2 tablespoons ground ginger

3/4 tablespoon ground cinnamon

1/2 tablespoon ground cloves

1/4 teaspoon ground nutmeg

Preheat the oven to 375 degrees F (190 degrees C). Grease a cookie sheet.

In a large bowl, mix together oil, sugar, eggs, and molasses. In another bowl, combine flours, baking powder, ginger, cinnamon, cloves, and nutmeg; mix into egg mixture to form a stiff dough.

Divide dough in half, and shape each half into a roll the length of the cookie. Place rolls on cookie sheet, and pat down to flatten the dough to 1/2 inch thickness.

Bake in preheated oven for 25 minutes. Remove from oven, and set aside to cool.

When cool enough to touch, cut into 1/2 inch thick diagonal slices. Place sliced biscotti on cookie sheet, and bake an additional 5 to 7 minutes on each side, or until toasted and crispy.

Festive Carrot Cake

2 cups flour 

2 Tbsp. vanilla

1 tsp. salt 

¾ cup frozen apple juice concentrate, unsweetened, thawed

2 tsp. baking soda 

3 cups grated carrots

3 tsp. cinnamon 

1 cup raisins

4 eggs 

1 cup walnuts

1 cup oil

Stir together flour, salt, baking soda and cinnamon. Beat the eggs, add oil and vanilla. Stir egg mixture into dry ingredients, add apple juice concentrate. Fold in carrots, raisins and ½ cup walnuts. Spray 8 ½ x 11 pan with baking spray. Pour batter in pan and top with balance of walnuts. Bake at 325° for 45 minutes or until cake tests done.

Let's Play Word Association: “Healthcare”

You know what pops into my head if someone says “healthcare?” A smell. That antiseptic scent somewhere between rubbing alcohol and Lysol. I might see in my mind’s eye a shiny hospital floor or imagine the crinkly sound of exam table paper.

But this week in an e-newsletter all about healthcare, I came across a different take on what the term should mean. It involves church. An Episcopal church in northern New Jersey has started offering an “All God’s Children” service on the first and third Sunday of each month. The service is geared toward kids with disabilities, particularly autistic youngsters, those with varying degrees of attention deficit and also pervasive development disorders. It must feel like a miracle to parents of special needs kids looking for some help to feed their children’s souls.

Yes, there’s no doubt in my mind – this church is offering healthcare. Managing an illness or chronic condition can be an exhausting, 24/7 job. And I think especially if it’s a parent managing a child’s condition, there’s often little room for anything social or spiritual. Through the worst of it, even emotions get set aside while mom or dad manages a crisis on autopilot. (How unhealthy is that!) This church is offering families balance in their lives and holistic care. It can’t help but improve outcomes to pray and be embraced by welcoming church volunteers and, just for a short time on a Sunday morning, step away from the constancy of life with special needs.

What I really like is the church’s webpage for this special service. It’s children’s-church-in-a-box for any religious organization that would like to replicate the idea. There’s a full description, video clips of a service, and links to media stories about their novel idea. Anyone can download their 18-page operations manual (page 7- suggested gluten-free snacks; page 13 instructions for Joyful Noise volunteer - “…speak loudly into the microphone, as the kids will likely make noise throughout this segment. Repetition, call-and-response, and simple mimicked movements work well;” page 15- one adult in the Prayer Room and one at the door at all times. Make sure no child leaves the building without their parent.)

So, does your doctor ask how life in general is going? Does the practice offer a list of resources outside of physical healthcare? Does your own house of worship or school or workplace ask how it can accommodate health concerns and include special needs? If not, suggest they take a look at Christ Episcopal Church of Budd Lake, New Jersey. Now there’s a practitioner of good healthcare (without the antiseptic smell).

My Amazing Eye Transplant

No, of course not really. I've still got 20/40 vision and my new best friend, eyeglasses with progressive lenses. But what's taken me away from blogging these past two months has given me the gift of sight – a way of looking out on the world with new eyes and a new sense of wonderment.

It all started because my family needed help. And much to my surprise, asking for help has transformed my thinking.

If you know my family’s story, you know my son has had a long road dealing with neurological problems. My child has overcome some huge obstacles that made the arrival of his college acceptance letter in the spring a great victory for him. But obstacles still remain for him to be successful once he starts college just a few weeks from now. True to his tenacious nature, he got himself accepted into college and also accepted into a selective transition-to-college summer program for disabled students. Great program, big pricetag.

In searching for resources, I stumbled upon ModestNeeds.org and knew right away this was something special. Folks with one-time needs due to trying circumstances can post applications for very specific situations, and donors contribute directly to stories that strike a personal note. Each application is carefully vetted by the organization, which vouches for its authenticity. I had to work up the nerve to submit our application to Modest Needs. Our family has never asked for financial help. From anyone. Ever.

In the end, 44 people – family, friends and strangers – contributed more than $2,500 so that my son could attend the college transition program at Landmark College in Vermont. He just arrived back home with a huge binder full of practical information on how to navigate college coursework and a fabulous taste of dorm life that’s got him itching to move out of our house, like, yesterday.

As wonderful as the college transition program was, the lasting effect for me will be this lesson: that acts of goodwill and generosity can change the course of our lives and our outlook on life forever. For me it's been a lesson in generosity of spirit. I am just overwhelmed to see how much others value what's so important to our family- that our son gain independence and education to live up to his full potential. Anyone who has dealt with disability or chronic illness knows how easy it is to let expectations slip, because keeping them high sometimes feels like climbing Mt. Everest in lead boots.

Thank you to Modest Needs for this gift of sight (insight, actually) that we will never forget.

Click here to learn more about donating to Modest Needs.

Respect

Just yesterday, my family shared a touching moment while participating in a Memorial Day Service. My son was asked to play Taps, so we all went to hear his melodious tribute. I sat there watching the veterans speak of their friends that never came home. I never met any of these fallen soldiers, but was moved to tears as I watched the flag go up, heard the echoing bell rung after each name was read. It was very somber. Guns were fired as a salute to these men and their families and then Taps was played and echoed through the trees. I looked at the crowd, most were men in their 80's and their families, some holding back tears and others with red, wet eyes. There were only a few young people. Have we, as a culture lost perspective? How many veterans do we care for in our communities, never realizing the sacrifices they made to ensure our freedom? Our elderly population lived through amazing times and many would love to share their memories. I shudder as I remember outlining chapter after chapter for history classes in high school, but sit in utter amazement when hearing the stories from a participant of our great history. If we would only remember to take time and remember that those feeble hands that are crippled held a gun to fight for freedom, held and nurtured a baby, raised a family or built houses. No one will know the stories our elderly can tell us, unless we ask.

A Tribute to Mothers

I recieved an email this week and it reminded me not only of the responsibility and joy of being a mother, but the tremendous amount of respect that I have for my own mother. It is a blessing to see your mother enjoy not only her grandchilden, but her great grandchildren, as well. In our culture,the elderly are not always honored as they should be. Please take time today to honor your mother by telling her you love her and spending time with her. Often times, time is the best gift we can give to our mothers. If your mother has passed away, take time to honor her memory today. Please read this interesting viewpoint of what it is to be a mother as you think about your own.

Somebody said it takes about six weeks to get back
to normal after you've had a baby..... somebody
doesn't know that once you're a mother, 'normal' is history.
* * *
Somebody said you learn how to be a mother by
instinct ... somebody never took a three-year-old shopping.
* * *
Somebody said being a mother is boring....
somebody never rode in a car driven by a teenager with a driver's permit.
Somebody said if you're a'good' mother,
your child will 'turn out good'....
somebody thinks a child comes with directions and a guarantee.
* * *
Somebody said you don't need an education to be a mother....
somebody never helped a fourth grader with his math.
* * *
Somebody said you can't love the second child as
much as you love the first ....
somebody doesn't have two children.
* * *
Somebody said the hardest part of being a mother
is labor and delivery....
somebody never watched her 'baby' get on the bus
for the first day of kindergarten ...
or on a plane headed for military 'boot camp.'
* * *
Somebody said a mother can stop worrying after her
child gets married....somebody doesn't know that
marriage adds a new son or daughter-in-law to a
mother's heartstrings.
* * *
Somebody said a mother's job is done when
her last child leaves home.....
somebody never had grandchildren.
* * *
Somebody said your mother knows you love her, so
you don't need to tell her....
somebody isn't a mother.

Coping With Dementia

Two days in a row now, I’ve come across information on managing Alzheimer’s disease that taps into a couple connections wired deep in the brain: our capacity for words and our capacity for music.

First was a New York Times news item about author Lydia Burdick, who has written a simple book full of colorful pictures and large type specifically for memory-impaired adults. “The Sunshine On My Face” is one of three books she produced while caring for her mother who has advanced dementia. For a little while, at least, the connection between mother and daughter that had been slowly fading away opened back up when the two women shared story books.

The second reference popped up in a Philadelphia Inquirer article about the popularity of a capella singing among medical students who need a creative outlet to balance the rigors of their studies. The University of Pennsylvania’s UltraSounds (every one of these choirs, apparently, can’t resist a medical pun when it comes to choosing a name) brought nurses to tears at one adult day center when heretofore mute residents began singing along with “Silent Night” during a Christmas performance.

Right now, I don’t have an Alzheimer’s patient in my life. But these news items brought back that rush of primal love and connectedness I felt when I used to sing lullabies to my babies or cuddle them in my lap for a story. Life does indeed come full circle. And if a book or a song can bring a moment of connectedness and a bit of relief from the pain of caring for a parent who may not remember you anymore, God bless author Lydia Burdick and the singing of The Ultrasounds, The Doctor's Note and the The Transplantations for the joy they spread.

"If you're a worrier, this is not for you."

Did you see a guy in California had $50,000 worth of testing done on his DNA? He’s a professor of bioengineering who let his colleagues at Stanford University study his genetic information to see if they could predict future medical risks in a healthy person. According to the US News & World Report article, Stephen Quake now knows he’s got a 23 percent chance of developing prostate cancer but only 1.4 percent risk of Alzheimer’s disease. And more likely than not, the currently svelte and 40-ish professor will wind up fat and diabetic, with a touch of coronary disease. Or so say his genes.

What about you? Would you want to take a peek into your genomic crystal ball? Not me. I’m too suggestible. Every time someone says that in women heart attacks can present as gastric symptoms, I immediately start to burp. I’m already highly skilled at worrying about the problems of the moment. (Hey, doesn’t that run in families??) If my genomic test turned up something dire, chances are I’d feel more helpless than heroic.

My philosophy is that generally healthy living will stave off all sorts of ills. So (ignoring for the moment issues like folks interested in errant genes that could be passed along to future children) why know the specifics. I already know there’s breast cancer in my family tree, so I do all the right things: I get regular check-ups, I exercise, the kids were all breast fed, the thought of a breast lump inspires me to take that extra serving of broccoli. But the benefits of doing all that aren’t exclusive to breast cancer risk. All of the above might stave off other cancers, mental illness, heart disease and its related conditions, just to name a few.

Privacy and ethical issues aside, do you have the personality to live with the results of a test like Quake’s? He put it like this: “It doesn’t tell you you’re going to be happy or a great athlete,” he told the Associated Press. “If you’re a worrier, this is not for you.”

Ta-Da! Improve Your Doctor's Visits With This

We’re really excited to announce that we’ve posted our FREE Patient Loving Care Doctor’s Memo for you to download. The PLC Doctor’s Memo includes detailed instructions on how to collect your thoughts for your next doctor’s visit and put them down on paper. It will help you to think through exactly what you want to ask, describe how you’ve been feeling and determine next steps in your care. There’s advice on how to word your thoughts clearly and how to present them in the most efficient way so you get the most out of your time in the exam room.

There’s a blank memo you can use as a template, so you can fill out a new memo each time you visit the doctor and also save it on your computer for reference. A sample memo gives you an idea how it’s meant to be used. And the instructions will walk you through each step.

So let’s get started! Click here to get your own copy of the Patient Loving Care Doctor’s Memo.

And let us know what you think! Leave a comment. Give a suggestion. Most of all, put the memo into practice and let us know how it works out.

Diagnosis: a Scott Hamilton Obsession

Flipping channels the other night, I stopped to catch a few minutes of figure skater Scott Hamilton’s special on Biography, and I was quickly sucked in for the whole two-hour show. What a charming guy. And what a story teller.

Hamilton framed his whole career through the lens of medical adversity and, although at times the schmaltz factor was way off the charts, his message about perseverance hit home in this house. I liked the vibe of genuineness – they filmed him wheeling his own bags through the airport, for pete’s sake. And I liked his honest assessment of failure – no slick and slo-mo, worship-at-my-altar shots like you see over on ESPN. Instead, he spoke to the camera about how his success never would have happened if he didn’t fall down so much (literally and figuratively). Every time, Hamilton just got up and tried that much harder. The strategy earned him an Olympic gold medal, a lucrative business producing ice shows, and apparently quite a lot of personal happiness.

The whole experience got me thinking about celebrity patients. Lance Armstrong turned his illness into a mega-million-dollar conglomerate to fight cancer. Who could forget Katie Couric’s colon (well, we can try). Christopher Reeve put a face on spinal cord injury and paraplegia.

Despite all the good they do, however, we live in a world where we’re bombarded with causes in favor of this, and against that.
It’s easy to tune out.
And so refreshing to come across one that stands out from the noise.

(Photo: coxnewsweb.com)

The Power of Love

My daily routine would start nearly every day the same way:on the phone with my best friend who happens to live more than 450 miles away. We would talk when we dropped off our kids to school and were on our way to work. We would talk about our rebellious children, our husbands, our reports from the kids' schools and our daily trials and tribulations. Looking back, the kids stomping their feet in anger, the husbands forgetting special days, the smart talk from our kids when we took their video game system away due to their grades was nothing compared to the tragedy that followed.

When Elaine shared with me the medical issues she dealt with one of her children, I immediately went into RN mode. I was torn as to how I could help being so far away. Does she need a nurse that is 450 miles away or does she need a friend to support her and try to guide her in a positive way? I decided that the latter was what she needed and soon found out that I could use my nursing knowledge to guide her in her thirst for knowledge. She is an excellent investigative reporter because she can teach me about neurologic disorders. Her search for information was amazing and mindboggling. Sometimes I just clarified the doctor's role and let her know that she was deserving of more from the doctors. Sometimes it was helping her to see the objective side of things. I know that sharing ideas and thoughts on this level has brought us closer together and I can not imagine either of us going through this without the other.

My own journey on the other side of healthcare-as a caregiver to a loved one-began the day my mother had a heart attack. She was in the emergency room being seen for back pain when I got to the hospital and saw that she was admitted into a room. She was not responding to me. I knew something was very wrong, this was not just back pain. All of a sudden nurses came running in and slapped electrodes on her chest, back and legs. They told me that her bloodwork came back and levels of cardiac enzymes indicated that she was going to have a heart attack. They wheeled her to the Coronary Care Unit with my dad and I almost running with them. We got there and I got to feel the chilling feeling that so many families feel when getting bad news. My mom finally spoke. She yelled out, "I am going to die!" Those words still echo in my head. The cardiologist said, "Lower the head of the bed, we are going to intubate her." The nurse looked at me and said, "Do you want us to intubate her?" I was desperate as I gasped to breathe for my mother and said, "yes." This began a four month process which I did not want to go through. That first night the medical staff told us that her heart was functioning at 10% and if she pulled through she may need a heart transplant. That night was miserable. I felt so helpless to do anything. I hated being on this side of the medical treatment.

The next months were full of ups and downs with her care and response to treatment. She was in three different hospitals and a nursing home for rehabilitation. She experienced good care, negligent care and mediocre care. I was horrified. I debated with doctors about their plans of action, medication choices and ordered tests. I am the coordinator of a nursing assistant program and could not believe the poor level of care that was often delivered at that level. I told some to change their gloves upon entering her room and if it were not for me, she would not have had her teeth brushed at all over those four months.

What do families do when they do not have this basic nursing knowledge? I am committed to help these family caregivers become empowered and demand the care that their loved ones deserve. My mother beat the odds and I feel it is nothing short of a miracle that she has been at home with my dad for the past two and a half years. And no, she did not need a heart transplant. I want all patients to get quality care and have their family members empowered enough to make a difference in their healing to reach their optimal level.

Diane lives east of Cleveland, Ohio with her husband and son. Her and her husband also have a daughter at The Ohio State University. O-H-I-O! Go Buckeyes!

Photo: Diane's mom, Dolly, recovered and celebrating her golden wedding anniversary with her husband Herb.

Who Am I? An Existential Question

It was the journalism degree, of all things, that turned out to be the sturdy dinghy in a mighty storm. When my child was diagnosed with a neurological illness, I went into investigative reporter mode – for years. The research kept at bay the nauseating sense of helplessness. The pointed questions to doctors and school staff kept them honest. And the writing – succinct, on-message sound bites to summarize my objectives for each check-up – improved my child’s care. Today, I firmly believe it played a strong role in bringing his health and functioning to optimal levels.

Strangely enough, the illness in turn softened my crusty reporter’s heart. That adage about “the really important things in life” became solace as any career aspirations I had faded away. A unique capacity for great patience and compassion would have remained untapped had this illness not joined our lives. And I slowly, painfully became adept at the art of optimism, a virtue heartily scorned in the journalism world. There are good doctors, there is the kindness of strangers, there are strong and compassionate friends without whom we would have never weathered the storm.

Next up, meet my best friend who was my rock and salvation as my child and I journeyed as lay people through the medical maze.

Elaine lives outside of Philadelphia with her husband, three children, and her Phillies World Series commemorative earrings.

(Artwork courtesy of wikia.com)

Feeling Like a Lab Rat in a Medical Maze

It's been six-plus years that I've been navigating the medical maze to care for a family member with a chronic illness. Over and over, I've become frustrated that “I don’t know what I don’t know.” Sometimes, my search to fill in those knowledge gaps has resulted in a solution that doctors loved, and they would say “I wish all my patients did this.”

Sometimes, the answer was found with other patients traveling a similar road. The advice came from strangers online who offered up their own experience for no other reason than to ease the path of other children and families dealing with similar issues. The sharing and caring, and swapping of strategies was invaluable.

And then there were the frustrations that were never answered. These were often the bigger issues – health insurance plans, the marketing strategies of pharmaceutical companies, the broader question of how our doctors are taught about patient care in medical school.

The creation of this blog comes from a desire to bring all the lessons together. To make it easier for the patient and the caregiver to navigate the medical maze. To support doctors who can knowledgably and accurately treat each individual. To empower ourselves to actively participate in our own physical, spiritual and emotional well being.