A Dad's Diabetes Blog

Extraordinary Indeed

2011-09-27T22:36:00.000-07:00

Occasionally, something really extraordinary happens in life. I'm not talking about finally getting a perfect latte. I mean something truly, life-changing, indescribably extraordinary.

My family has had two such experiences almost precisely a decade apart, both driven by Type 1 Diabetes, a chronic, incurable, potentially life-threatening disease. In 2001, diabetes landed 2-year-old Shelby and my family in the hospital for three days. Ten years later, diabetes put us on the receiving end of an unmitigated outpouring of human kindness, love and support from complete strangers.

Words cannot express the emotions that surface when total strangers tell you, "We want to grant your daughter's wish." You run through the reflexive parental checklist: Who are these people? What do they want? What's the catch? Is it safe? How much is this going to cost? You Google the group; run them through some background checks. Finally, you realize these people are legit and their offer is sincere. Your head reels. Emotions tilt. Reality becomes unreal.

The Wish Connection, a nonprofit group of AT&T employees, granted Shelby's wish with two amazing weekends this September. First, was Giants weekend - a luxury visit to San Francisco featuring the Mark Hopkins Hotel, the San Francisco Giants and the California Academy of Sciences. Then, it was off to New York City - the Marriott Marquis Hotel on Times Square, 'Wicked,' and the New York Yankees!

At every step of the way - from the drivers at the front door to the staff at the Mark Hopkins to Frederic, the New York attorney who met us at the Marquis, to the Fratto family who chaperoned our first New York City subway ride - we met wonderful, generous people focused on making sure we had the time of our lives. And did they ever deliver!

Extraordinary experiences by definition defy all logic and emotion. If we attempt to take them in their entirety, they overwhelm us. This wish experience is no exception. It will continue to surface as vignettes, snatches of memories and isolated events for weeks, months and years to come.

Here are just a few:

ANDRES!

The entire Bucca di Beppo San Francisco staff was just awesome! We felt incredibly special - way overfed - but special. Particularly, when they brought out the massive sundae for us to share for dessert!
On the field at AT&T Park during Giants batting practice! With all the guys right there! Right there! The Panda, Aubrey Huff, Mark DeRosa, Mike Fontenot, Kruk and Kuip, and, of course, Andres Torres! All right there!
The incredible Mark Hopkins hotel staff. We never even touched a piece of luggage! The welcome during breakfast at the Top of the Mark.
Our Crew! (Do you have a camera crew following you around?)
Times Square in New York City! Simply incredible!
Forever 21. Strand Bookstore. M&M World.
Fresh New York bagels for breakfast. Junior's cheesecake!
Wicked - simply the most spectacular theater experience of our lives!
New Yorkers: Ritchie from the neighborhood - our slightly irritated driver who played nothing but Sinatra music as drove to Manhattan; the cabbie who's driving made Liz car sick; the Junior's counter girl who clearly hated her job; the Gershwin Theater barkeep who apparently didn't realize vague gestures don't count as actual communication.
The Frattos - Mike, Danielle, Daniel, Michael, and Courtney - who treated us as life-long friends from the moment we met in Times Square. It's awesome to have personal chaperones on your very first New York City subway ride to Yankee Stadium!
The New York Yankees - an incredibly classy and generous organization.

Shelby takes on Times Square

What's the appropriate response when a group of people succeed in surpassing your every expectation at every turn? How can you possibly say, "Thank You," enough for a once-in-a-lifetime gift?

Thank you to the entire Wish Connection team - David and Sandra Tate, and the dozens of people in San Francisco and New York who pulled this all together just for us. And, of course, Dayna Hall, without whom none of this would have ever happened!

For the rest of our lives, we'll have this Wish, and memories of these incredible experiences together as a family. It simply defies all logic, emotions and words. It is simply, truly, indescribably extraordinary!

Photo albums of each Wish Weekend, see the Shelby & Co. Facebook at www.facebook.com/TeamShelby

Time to Fly

2011-07-04T09:06:00.000-07:00

They say industries and technologies that once took 40 to 50 years to become obsolete are now becoming outdated in just 4 to 5 years. For everyone who's working, that's a sobering thought. Unless you can embrace change as a constant and normal force in your life.

I remember sitting in a seminar of middle managers and executives at a newspaper office where I worked talking about the subject of change. The industry is changing, we were told, and we were going to change with it to be on the leading edge of what was coming. What was coming immediately was downsizing, and we were really all being prepped to discuss with our employees how to handle layoffs. Change is good, normal and healthy, we were taught to tell our employees as we showed them the door. I still think the change speech we were instructed to use was a cowardly cop out. We didn't really tell anyone where we were going and how they didn't fit into the new plan. We just wanted them gone; not the most productive type of change.

As the company continued to contract for no perceivable strategic reason, I left on my own terms for a career in public service. Since then, the newspaper has been sold and is continuing to contract to the point that I'm not so sure it is still fulfilling its purpose in the community. It seems to be squandering its very reason for existence. That industry is definitely changing, and moving toward obsolescence.

Some 5 years on, I'm at another crossroads. The Governor and state Legislature have declared the local government agency I worked for is an unnecessary luxury taxpayers can no longer afford. We've repeatedly argued that someone at some level of government in California needs to be concerned with fostering and creating private sector jobs. Building the economy is important. Helping entrepreneurs get launched or expanding on the next great idea will help us build for the future. We were overruled. We'll sue now to try to reverse the decision, but the die has been cast - change is upon me. So now what?

I've just finished reading a book I've meant to read for some time, "48 Days to the Work You Love" by Dan Miller. In it, he argues that people who follow their passions, who do the things they were put on this earth to do using the special skills they possess will find sufficient resources to support their families, and likely be blessed with more. It's the servant's attitude Jesus talks about repeatedly - do for others what you can with the gifts you have and you will be blessed.

Dan Miller included this passage in the conclusion of his book:

The eagles build a nest using thornbush strands to lock it together. Then they cover them with leaves and feathers to make it soft and comfortable. However, when the little eaglets are about 12 weeks old, the mom and dad eagles begin to remove the protection from the thorns. Pretty soon the little eaglets are up on the edge of the net to avoid the pain and discomfort. Then the mom and dad eagle fly by with tasty morsels of food just out of reach. The little eaglet sees that if he leave the nest, he'll drop and crash on the rocks below. However, as the discomfort continues the little eaglet makes a big leap to get away from the pain and toward the food and discovers he can fly.

Oftentimes God allows circumstances in our lives not to leave us in pain and hunger but to lead us to higher levels of success that we would not otherwise explore. See the thorns in your situation as a prod to explore new options.

Do not look at any circumstances or past history with regret, but simply learn from them as you create a clear plan for the future. Everyone has events that have helped to make us what and where we are. You simply must look at where you are and then create a clear plan for the future you want. That process of seeing 5 years out and clarifying what you want that to be will immediately being to lessen the uncertainty about any current situation.

So, this is my time to fly. I still have a nest and plenty of life's necessities, but it's time to explore new horizons as well. It's time to firm up my preparations because my opportunities are coming!

My Mottled Quilt

2011-01-11T22:32:00.000-08:00

Purple. Violet. Green. Yellow. Blue. Occasionally, maroon.

Bruises.

Blossoming from imperceptible holes each a quarter of an inch deep the bruises usually don't get bigger than a dime. But they begin to overlap. Different ages - breakfast this morning, lunch yesterday, breakfast from three days ago, dinner from ... when was that dinner? ... - melding together in a mottled quilt of various shades.

The space on either side of the belly button is the best place for the injections. It's an area with some excess fat stores, and it absorbs quickly. It's also an accessible area that I can shoot through a T-shirt without undressing in the middle of a restaurant dining room.

Today, I had an itch on my stomach. When I scratched a little through my shirt, the skin was sore like sore muscles but on the surface. It took me a while to figure out why. Until I saw my quilt of bruises, spread on either side of my navel like a cummerbund.

At dinner, I half undressed in the kitchen to inject my insulin in the back of my arm. I can't see the little bruises there. But I certainly feel them when I hit one with a syringe - a pool of fire suddenly radiating across my upper arm. The logistics of taking injections through heavy long-sleeve shirts during the winter is somewhat of a nightmare in an office environment. Guys look askance when they walk in on someone partially undressed in the men's room.

As I let my belly quilt heal, I'll work on one on the back of my left arm; perhaps a little on my right. They don't really hurt. They are just part of me - little pools of blood drawn during an insulin injection healing.

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Second day back from vacation was all about knocking tasks off my to do list. My desk is still clean. It was in the 40s all day; rain started just before I headed home.

Stepping Up

2011-01-10T22:34:00.000-08:00

The news came like a sucker punch: Gov. Jerry Brown wants to eliminate all 425 redevelopment agencies in California. Unfortunately, economic development is a tax break the state can no longer afford, the governor's budget says.

I understand the politics. I appreciate the figures. There is going to be lots of debate between now and the July 1 deadline for eliminating the agencies. There may even be an election on continuing taxes. But it also means benefits and salary I need to support my family.

It feels like bolt from the blue when Shelby was diagnosed with Type 1 Diabetes. "You know her glucose levels are at 395?" We had no idea what that meant. Usually, the high score wins. Was it because she ate sugary food shortly before the test? What were we supposed to do? On that night nine years ago, the doctor sent us to the hospital where we spent three days training and learning what a 395 blood sugar meant. And it wasn't good.

But when the governor targets your employer for elimination to balance the state budget, what are you supposed to do? There are so many levels reaction: Should we start shutting down the agency and stop certain programs? What if the proposal isn't adopted by the Legislature? How might they change it? What am I going to do if my job is eliminated? Might my job be moved into the City's general fund, or could there be another opportunity? How can I focus on doing my best work when uncertainty is swirling around me? Should I plan to stay where I am, or look for another job? Does anybody really know?

A leader prepares to do his best with poise when his best is demanded. It feels like that time is now.

The Future

2011-01-09T22:13:00.000-08:00

It is impossible to know what the future holds.

Live in the here and now. Never assume too much. Make a plan but be prepared to pivot. Embrace the ones you love. Thank God for what you have.

Embrace what will come tomorrow.

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Sunny but cold today. Tearful goodbyes ending a very relaxing week off. Back to work and school tomorrow.

We're All in This Together

2011-01-09T00:22:00.000-08:00

Every so often, one of my children will say something particularly hurtful. It's usually one of those 'cut to the quick' type of comments that they really don't understand. They're just lashing out. And it works.

At those times I tell them that what they say is important, and has impact. They aren't little kids any more babbling on meaninglessly. They are 12, and old enough to know when they are being hurtful. Being hurtful is not acceptable.

Today, Rep. Gabrielle Giffords was gunned down in Arizona while holding a 'Congress on the Corner' event in her home district. While it looks like she'll survive, others were not so lucky. The motives of the man wielding the gun are not yet clear, I'm fairly sure there is some underlying political motivation. It's no wonder. The rhetoric and hyperbole in our country has gotten out of hand. America is not under siege nor is it being taken over by socialists. Armed revolt is not needed.

It's time for a return to civility in our public discourse. We can disagree and even discuss policy differences passionately but respectfully. Every person is entitled to their point of view and opinion without be subjected to personal attacks, threats or reprisals. I want the Republican and Democratic leaders in Congress to work hard all day to do what is right for our country, then adjourn to a nearby pub to hoist their favorite beverages together.

After all, we are all in this together ... right?

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Very nice day today. Some sun, some clouds. Nice game night featuring Mad Gab.

Quick Thoughts on Success

2011-01-06T22:02:00.000-08:00

The secret to success is working hard with enthusiasm and knowing that you have done your very best.

That's the wisdom from John Wooden, one of the best basketball coaches of all time. I started reading his book "Wooden on Leadership" today, and I'm already learning stuff from the first chapter description of the Pyramid of Success.

I wonder if the same definition applies to parenting. You love your kids, you do your very best to teach them everything you know, including how to be generous and giving. If you know you did your very best every day in everything, can you come away knowing you were a successful parent?

I'll share more as I read more.

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The weather was warmer today. Walked to Subway for lunch with kids, and helped with a candle party with Liz tonight. The kids each have their candle party jobs, which they take very seriously.

Legacy

2011-01-05T10:28:00.000-08:00

Life. Death.

It's the ultimate dichotomy. The most base yes/no, on/off, left/right, black/white, 1/0 choice in all of our lives. There is no gray zone. No compromise.

But we don't know when that switch will get flipped. It's fully in the hands of God. It could happen when we're old and have lived a full life. It could happen today on the way to the store. We just don't know.

A year ago today a friend of mine came face to face with his time. While simply doing his job, Clu's time in this world ended. Sudden and dramatic, his death is still rippling out through those who knew and loved him. His smiling face greeted us in a holiday card. His name graces a new monument outside the Fish and Game office in Fresno. His impact lives on through his children.

It's an enduring reminder to live every day, every moment to its fullest. To love those closest to us. To not put off until tomorrow that which we hold most dear. To strive to accomplish those goals we set for ourselves and our families. Your legacy is being built today, right at this moment. What will your legacy be?

When Food Becomes Medicine

2011-01-03T22:12:00.000-08:00

Food - "Any nourishing substance that is eaten, drunk, or otherwise taken into the body to sustain life, provide energy promote growth, etc."

Medicine - "Any substance or substances used in treating disease or illness, medicament, remedy."

In the Garden of Eden, there was much to be eaten. We often envision a veritable cornucopia of all types of fruits and vegetables all ripe and ready to be enjoyed. Eating just happened. It was natural. You were hungry, you grabbed something and ate it. It was good.

It probably wasn't until after Man was kicked out of the Garden that the concept of 'food' was born. Around the time you had to start searching for something to eat, and discovered that not every was good to eat would you realize that not everything was 'food.' Sometimes I wonder how people discovered that certain mushrooms were poisonous.

Still 'food,' as a concept is essential to humans. Any parent knows that infants know about food. They come hard-wired to seek out a breast for nutrition. They know that if they cry someone will stick something yummy in their mouths. It's nature. In fact many people become addicted in one way or another. They often seek interventions to help them use just enough food to fuel their bodies.

According to the entomologists, the word 'medicine' didn't enter the first vestiges of English until 1175. I'm sure people had been nibbling or applying certain leaves, barks and roots for generations before then to soothe various ailments. But the organized concept of 'medicine' came along much later. For those of us in the 21st century, medicine is pretty natural, as well. When something goes wrong, we seek out someone to fix it. These doctors know which combinations of substances to give us to make use feel better or get our bodies back on course.

I've discovered that there are situations in which 'food' becomes 'medicine.' I'm not referring to those who are emotional eaters who use food to soothe various psychic injuries or needs. It's not medicine to grab a Snickers after your boss dresses you down in the office. I mean a situation in which a doctor really tells you to eat something to address a real medical issue.

For 397 days, I've carried food around with me to treat an emergency medical situation. I measure and dose my food, so I can bring about desired medical changes in my body. It's a weird relationship to have with food. It seems very unnatural. I can't just grab something to eat and enjoy it without a second thought. I have to analyze it, figure out what's in it, measure it. I have to provide a calculated amount of insulin so my body will metabolize the food. Then I listen for those little signals that say, "You didn't get it right." Perhaps I need some of that emergency snack to balance the insulin that's sending me dangerously out of balance.

Type 1 Diabetes does a lot of things, including turning food into medicine.

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The sun came out again today, finally. Ran a bunch of errands with the kids, including recycling cans. They split the $52.50 proceeds.

Loving What You Do

2011-01-02T22:43:00.000-08:00

It has been said that one secret to finding fulfillment in a career is to find someway to get paid to do what you love. In this article written by a life coach, it is suggested that people who pursue their passions for a living make the most impact upon the world. But what happens when the thing you love becomes distorted and commercialized in the process of you getting paid to do it.

Writing has always come easy to me. The system of language - even the convoluted American version of English - made sense to me. In school, putting together an essay on something we'd talked about in class or on a story we'd read was second nature. The ability to write down my thoughts and feelings without fear of someone judging them was a therapy when little else in my world made sense. It was the process of research and writing that allowed me to explore the world around me and help me find my place in it.

So as I gravitated toward a career in writing in high school and college, it made perfect sense. People would pay me to do what I loved, and I could make a difference in the world, or at least the small communities in which I lived and worked. My first articles could be as long and detailed as they needed to be. With practice, I became more disciplined and concise, able to condense complex concepts in terse prose that conveyed meaning and painted a scene at once. I was successful. I won raises, promotions, more challenging jobs at larger publications, responsibility for shaping other writer's words. But somewhere, I transformed from a writer into a widget maker.

The articles that were painstakingly researched and written or edited needed to conform to dimensional criteria. The work needed to fit into neat boxes that could be moved among numerous publications the next day. There were 3-inch briefs, 6-inch shorts, 10-inch articles and the mainstay 15-inch stories. With compelling evens and deft argument, I might win special dispensation for a 20-inch tome. All of these would fit pre-formatted slots online too. There was new purpose in the terse, concise writing skills I'd honed years before. The economy was not only in paper and space, but in attention span of readers.

Outside of journalism, I found myself without colleagues. Few people cared to discuss the proper verb tense or the placement of commas and semi-colons. Writing became and means to an end not an end in itself. What sounded better, was politically necessary, or justifiable phrased was paramount. It is writing for necessity not the joy - or even therapy - of the activity itself. Much less art.

So what happens when your passion transforms into a mere commodity? The emotion is gone and you are left with an activity that consumes your day, secures you a paycheck but is not necessarily stimulating or satisfying. You find yourself on Day Two of a 365-day Writing Challenge finding a path back to your first love that will breathe excitement and meaning back into your everyday life.

Content must become art again.

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It was showery today in the 40s for the third straight day. Alex & I went to the fancy McDonald's in Napa for a buy one smoothie get one free date. He threw in a large fries to share on the gift cards from his wallet. He was 48 cents short.

A New Year

2011-01-01T22:58:00.000-08:00

It's very popular to make resolutions on New Year's Day. People pledge to lose weight, volunteer for a local charity, workout more or any host of promises to essentially be better people. It's a seemingly primal urge to mark a new year as a new beginning to be the type of person we see inside ourselves. There's some cathartic about wiping the slate clean and starting over. But there are times when something clicks that is more than a resolution. It's more like a shift taking place, like psychic tectonic plates that slip suddenly and create a new reality. It seems that's what's happening with me.

As 2010 wound down, I decided to clean my work space at the office, and start using some organizational tools that I'd had for quite some time but never really found the time to learn or use. After all, it would take yet more time that I don't have to learn to use tools to help me manage my time. I cleaned my desk one day; just went in and did it. The papers that were important went into file folders; bits of data scrawled on Post-Its went into Outlook; two recycling bins worth went down the hall. I started using an electronic To Do List, and things started getting done. It was important to write things down, then knock down the tasks off like cans lined on a fence waiting to be ticked off one thrown rock at a time. My desk managed to stay spotless and very productive for three days before I left for the holiday. We'll have to see what happens when I go back and resume the usual workload.

Getting organized is one thing, but being inspired is something else entirely.

While looking for photos online in recent years, I was amazed by a challenge some photo enthusiasts took up. The goal was to share a new photo each day for an entire year. They would try some new photographic technique, a new tool, a different locale, do something each day that - at the end of 365 - would amount to real significant progress toward being a better photographer. I was impressed with the concept and the discipline of accepting such a challenge.

I'm taking up a similar challenge - write something every day. For someone who develops content for websites, press releases, staff reports, e-mails and countless projects each week, challenging myself to write something every day seems almost silly. After all, I type and text almost all day long. The keyboard and iPhone are like extensions of me. But I'm talking about real writing, the passionate desire to put down something meaningful every day; get back in touch with what I loved about writing that drove me to become a journalist in the first place. Back then, the actual writing was interesting, challenging and fun. Now, what I do all day isn't so much writing as producing commodities.

So in 2011, I'm taking up a 365-day writing challenge. Each day, I'll write something with some personal interest or meaning. It could be a simple reflection, or a commentary about something in the news or a current event. I don't know where this is going to take me. It could be really interesting, or it could be one of the dumbest things I've ever decided to do. But I hope that by Dec. 31, 2011, I've rekindled some of the love for writing, language and self-expression that has slipped away bit by bit over the years.

I invite you to come along, if you wish, on my little trip of self-discovery. But realize it may not always be pretty or as polished as a much-labored novel, and it's not about anybody but me. It's more than a simple resolution to try to be better. This is a personal earthquake creating new mountains and valleys where other landscapes currently exist. It should be an interesting year.

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It was cold, blustery and wet today. It rained on an off with temperatures in the 40s.

It Really Happened!

2010-11-02T06:20:00.000-07:00

There is happiness across the land this morning. Not a smug satisfaction or a swaggering 'told you,' but a deep, emotional happiness rooted in a disbelief at what we all - the entire nation - saw last night.

The San Francisco Giants are the World Champions!

2010 was the Season of Torture. Fans used that word often to describe our baseball team. It was first uttered this year in April by radio broadcaster Dwayne Kuiper - April for pete's sake! We lived through a season of one run losses, crushing comeback losses, one run wins after being up half a dozen, pitchers who suddenly couldn't find the strike zone, hitters who looked mystified, the $126 million man who cost too much to send down to Fresno. This looked for all the world like another typical Giants season.

Then, it started happening. The wins quietly began to pile up. The little things began to click and we'd win a game, then we'd win a series, then we'd win a road trip. Then the San Diego Padres would implode. Then we won the division. Could this really be happening?

Not according to the national media. The Giants were statistically the least productive offensive team to make the playoffs. The wild-card Atlanta Braves were going to crush us. But they didn't, and we won it on their field. The 2-time defending Eastern Division Champs Philadelphia Phillies were going to stomp us, but they couldn't, and we won it on their field!

The Texas Rangers had a pitcher who'd never lost a World Series game. A lineup of American League sluggers that had embarrassed the mighty billion dollar New York Yankees. Those young nothings from the City by the Bay - you know THAT City, where everything goes, including open, scandalous pot smoking right outside the ballpark - they're going down!

Funny thing happened: that undefeatable pitcher, Cliff Lee, got beat twice! Those quiet bats rung up 30 runs. Those kid pitchers shut out the Rangers twice! There's a reason Tim Lincecum has two Cy Young Awards!

Against all odds. Against all the history in San Francisco. Against all the media sages. The Giants are World Series Champs!

This isn't just about 2010, either. At any given game, a host of living baseball greats will show up in San Francisco. Willie Mays and Willie McCovey live at AT&T Park, I think. It's about Mike Murphy, the beloved clubhouse manager who started his career with the San Francisco Seals and joined the Giants when they moved to San Francisco. It's about lifelong fans who went to ballgames with their fathers dreaming and hoping their team of stars could win a championship. It's about enduring Candlestick Park, reportedly the coldest ballpark ever to host a summer sport. It's about a team that almost moved out of town twice, but now plays in probably the most beautiful and beloved park in the majors.

It's about champagne and stogies for a 48-year fan. It's about recollections about how much now loved ones long gone would have loved to have seen this day. It's about fans who just can't express themselves at all without tearing up.

The 2010 Giants also are about a group of guys - young, talented players mature beyond their years, goofy veterans who never made it here before, quality veterans perhaps ending their careers - pulling together and saying everyday, "We can do it today." We don't have the single big-name superstar to carry the team. We have 25 guys all of whom can take the field on any day and get their job done.

This is Giants baseball and we can't get enough!

Right after we celebrated the last out last night, Alex said, "Well, no more Giants baseball until April." But it's going to be an awesome off-season and an off-the-hook Opening Day!

Congratulations Giants, and all you fans who had lost hope that this day would ever be possible. It really happened! We won it all!

Walk Weekend

2010-10-24T18:54:00.000-07:00

What a weekend!

Two major forces in my life came together in a single weekend, actually a single day. We walked to cure diabetes, and the Giants won the National League championship.

On Saturday, we took part in the most awesome of the Walks to Cure Diabetes that we've seen so far. It was the first time we'd even walked over the Bridge. There were lots of logistical challenges and it didn't come off just as I'd envisioned for Team Shelby, but it was impossible to escape what was going on. Thousands of people trek across the world's most famous bridge to raise money to cure the incurable. We were inspired by the number of family and friends who joined us, particularly those Bay Area natives who had never before walked the bridge before. What a wonderful reason to do it.

Back home that night, we watched the Giants beat the Phillies to win the National League championship. As Giants fans, it was a huge event! We'd cheered and hoped through the Barry Bonds years, only to see in 2010 a unique group of players come together with common purpose to become the best team in the National League. Every player on that team contributed something to the effort. It was impossible to tell which player would make the big play that would mean the difference in the game. That's what makes this team so special - torturous for fans, but special.

In many ways, I suppose, that was is the unifying principle of this weekend. Everyone doing their little part to support the results of the team. Team Shelby is all about everyone doing what they can to defeat Type I Diabetes. In each of the past nine years, we've been repeatedly awed by our family and friends - their resilient commitment to supporting our quest for the seemingly impossible. In the same way, there is no single star player on our Giants. It takes everybody's effort, and if one player is having an off day, there is someone else to step in and do their best resulting in a win.

It was a remarkable weekend!

Off to Outdoor Ed

2010-03-08T06:26:00.000-08:00

It's a rite of 5th grade passage we've known about for four years: Outdoor Ed. A week at camp hiking, exploring and learning about ecology and nature with about 85 squirrely 5th graders, their teachers and sufficient numbers of drafted parents to serve as chaperones and camp counselors.

From the first mention, Liz announced that I'd be attending this outdoor camp adventure to help with Shelby. Having done several childhood tours of duty at campgrounds throughout the western US and Canada, Liz is an unabashed non-camper as an adult. She likes the outdoors, but Motel 6 is about as rough as she'd like to go these days.

My main assignment was to be the on-site parent to oversee Shelby's diabetes management. The school does a wonderful job with her while she's on campus, but we can't expect them to carry that over to a 24/7 off-campus activity such as Outdoor Ed. There are too many new variables: different diet, different exercise and activity demands, different stress for which to compensate. Besides the routine 3 a.m. BG checks are way to much to foist upon the unseasoned.

But what I didn't know four years ago was that we'd have two with T1 Diabetes going on this trip from our family. This will be my first time outdoors enjoying all the same variables with my own diabetes. To add to the excitement, I just started on Friday a regime of Lantus long-acting insulin to try to knock down some of my morning highs.

Heading out on a trip with a bunch of 5th graders, eight of which will be my charge for the next week, is not a good time for dosing experiments. The last thing they need is a counselor who doesn't wake up in the morning, even if one of them is my son who probably would know to get a juice for me. So refining my dosing will have to wait until I get back. Besides, I'll have all that hiking and stuff going in my favor this week. I'll probably lose 10 pounds! (Liz would hate me!)

The need for the Lantus prescription was spotted during my trip to UCSF on Friday for my second GAD injection. The first one went off without a hitch, so I moved on to shot No. 2. No reactions so far to this one either; I go back next week for the follow up. I warned the research staff that if I didn't make it in Monday, then the boys killed me at Outdoor Ed. They just laughed.

I really am looking forward to this trip. The kids at the school are mostly well-behaved and listen fairly well, so I'm reasonably confident the lads won't gang up on my and smother me in my sleep or anything. Besides, their teachers are there to handle major discipline problems, and at least one has already threatened a quick trip home for any miscreants.

We're headed off to Alliance Redwoods, a church-owned campground just a couple hours away. But was with so much of California, a two-hour drive can take you into an entirely different setting, and that's the idea. I'll be without cell or Internet access, they tell me, but I'll have a paper journal with me and the book I'm reading "Diabetes Rising."

I'm looking forward to a great week with my kids and all their school friends. Now if only the weather forecast holds and it doesn't rain. Being cooped up in the cabin with the boys for a week might just do me in.

What are you doing up so early?

2010-03-03T06:15:00.000-08:00

I'm up unusually early today. It was still dark and cold when the alarm woke me.

It wasn't my work phone, my personal cell or the clock radio. They all have specific alarm assignments positioned strategically around my bedroom in locations designed to actually get me out of bed for a specific purpose.

But the alarm this morning was the little tweedle-dee of Shelby's insulin pump that sounds something like an electronic adaptation of the sirens on British ambulances, at least the ones we here in America see on TV.

It woke me for two reasons. First, the sound itself, but, second, the very fact I could hear it. It had to be closer than her bedroom, which is on the other end of the house from ours. Shelby had snuck into our room and was sleeping in a ball - cat-like - under a blanket positioned on top of the heater vent on our bedroom floor. It's a favorite location for both kids, and has spawned more than one midnight argument over who got there first.

I uncovered her enough to find on the waist of her pajamas the pump, on top of which she was lying, as usual. After silencing the alarm, I read the little screen - "ENTER BG NOW." Clicking a button a couple of times I learned that not only is the continuous glucose monitor not working, but the insulin reservoir in the pump is empty, too. Great! It's 4 a.m. and I've got a significant mental project on my hands requiring some care and dexterity.

The pump and the continuous glucose monitor are terrific devices that make managing Shelby's diabetes much, much easier. I can't thank the researchers, manufacturers and advocacy groups, like the JDRF, enough for their essential work to get these on the market. Plus, they are entirely covered by my medical insurance, a blessing beyond anything I can imagine given the cost of these tools. But they come with about four essential pieces that need to be replaced or refilled from time to time. Each of these come in packages of different counts that need to be ordered through a special phone number different from our usual prescription refill service. Managing these supplies would challenge a Marine Corps Quartermaster, and from time to time something slips past our 11-year-old. Such is the case with the reservoirs, which we discovered were all gone late last week.

So there I am standing in the kitchen in my underwear trying to quietly pry open the sharps container and dump it out on the counter to search for the parts I need to refill the reservoir so I can get the pump up and running again. The shipment of new reservoirs should arrive later today, but Shelby can't go without insulin until then.

After some effort and fatherly ingenuity, I managed to get the reservoir refilled, the pump reattached to Shelby and her blood sugar tested so I could "ENTER BG NOW," as the pump demanded. She was 321. The sensor won't calibrate to anything over 300, which it - helpfully - reads as a high blood sugar that needs insulin. I dose 1.7 units.

By now, I'm fully awake. Besides, it's just 20 minutes before my clock radio alarm is set to go off. Though my escapade through the world of medical sharps and pump refilling has woken no one, the very act of getting back into bed is sure to get at least one of the dogs up and will likely wake Liz, too.

It's official, I'm up. I click on the burner under the teapot, brush my teeth, put on my real pajamas. I check my own BG - 90. The rain is skittering on the skylight, and babbling like a fountain in my rain barrels outside. I French press some coffee and head into our home office/laundry room so I could share this vignette with all of you.

So that's why I'm up so early this morning. Aren't you glad you asked?

An Advocate Turns Patient

2010-02-03T22:37:00.000-08:00

It was delivered today by the U.S. Postal Service - a nondescript padded manila envelope. I tore it open then dumped out three sport bracelet bands and a red nylon pouch.

The sports bands were for Shelby, replacements for the worn pink band of her medical alert bracelet. The red pouch was mine. I'd ordered it last week following through on my doctor's advice. Inside the pouch, carefully wrapped in stiff tissue, was a stainless steel cuff. It bore the red medical alert symbol by the etched words, "Diabetes (Type 1)." On the inside, my name, a contact phone number and my Kaiser medical number were inscribed.

I slipped it onto my right wrist, the same one on which I've worn a blue JDRF "CureType1.org" rubber bracelet for years. In that moment, I was marked, labelled, transformed. No longer am I simply a father advocating for his daughter living with a disease. I am a patient, a diabetic. My new shiny bracelet declares it.

The blue band is designed to advocate, to educate people about T1 and urge them to action. The medical alert bracelet simply informs first responders why I may be unconscious, so they can save my life.

I'm wearing them both now. The newness of the metal cuff feels odd still; uncomfortable and a little foreign. As I ate dinner, washed the dishes and finished my evening routine, the two bracelets moved around my wrist. Sometimes the blue rubber band rode atop the metal cuff. At others, the metal cuff dominated. It's a symbol of the dual roles that I feel. At times, I'm more the advocate - academically knowledgeable about T1, articulate in a wide range of issues and opportunities. At others, I'm the rookie diabetic - just 63 days from diagnosis - learning to listen to my body's signals and signs, and how to manage insulin to control my blood glucose levels.

How long it will take before the new medical alert cuff feels like a natural extension of my arm like the blue rubber bracelet has become? Part of me hopes it comes soon; another part hopes it never comes at all.

My GAD Primer

2010-02-03T06:26:00.000-08:00

I'm in the study! I'm in the study! (Sing to the tune of "I'm in the Money" for greatest effectiveness.)

I was officially accepted this week into the Recombinant Human Glutamic Acid Decarboxylase (rhGAD65) study. It goes by the short name the GAD study.

Though this is an international effort, as so much research into Type 1 Diabetes causes, cures and treatments are, the focus of this study is to prove the safety and effectiveness of this 'vaccine' to slow the autoimmune progression of T1.

Some important basics: T1 is caused by an autoimmune progression in which the patients body turns on the insulin producing cells in the pancreas and kills them. There are four antibodies that can be created in this process, indicating that there are up to four separate proteins being attacked by white blood cells simulateneously. T1 can result from attacks on only two of these proteins.

The GAD study isolates one of these proteins - Glutamic Acid Decarboxylase, or GAD.

From decades of work with vaccines to various diseases (flu, polio, etc.), it's been proven that the body can be trained to react differently to organic pathogens through controlled exposure to small amounts of that pathogen. So researchers wondered what would happen if they formulated a 'vaccine' for GAD. Would the body learn to tolerate this protein that every single person has?

Lab results proved that it worked. So several years ago, they moved into adult trials. The results have continued to be very positive. By using a series of three injections given over a couple months, the GAD vaccine stops the autoimmune progression thereby preserving the patients insulin production for up to 16 months. This is terrific news for T1 patients who are within the first 3 months of diagnosis!

The results have been so positive that the study was recently opened to patients as young as 3 years old, a sign that the FDA agrees this is a very safe procedure. In fact, they have yet to observe any serious complications or reactions to this protocol. I understand that they hope to start the process of full FDA approval of the new treatment for routine use in 2011.

The GAD treatment is the only drug treatment that halts the progression of T1 to reach this level of trial.

What's in it for me?

Starting Friday, I'll get a series of three shots of this synthetic protein. Well, I have a two in three chance of getting the real deal. Because this is a trial, there is a control group that only gets a placebo (a dose with only the filler material and none of the actual GAD).

So, if I get the GAD, my ability to produce insulin on my own will be preserved at its currently compromised level. That should protect me from excessive high and low blood sugars and allow me to continue to give myself only bolus insulin when I eat, though I may be on the edge of a more aggressive basal dosage as well. This is called extending the 'honeymoon period.' This could last for a year or so.

I'll likely have fewer

Lower blood sugar episodes that could cause blackouts when I'm at work, driving, gardening or just watching TV
High blood sugar episodes that will erode blood vessels in my body that impact my ability to see, have proper circulation to my extremities and fight off heart attacks
A reduced risk of both severe low and high sugar episode that could result in hospitalization, coma or death.

If I don't get the GAD, my T1 will continue to progress as it is currently is progressing. My pancreas will produce smaller and smaller amounts of insulin as my white blood cells attack parts of my pancreas that create insulin. I will have to manage my T1 all day, every day to remain reasonably healthy, just like Shelby has been doing for 9 years so far. As a participant in this study, I will have worked with some of the nation's leading minds in T1 research and helped them better understand this disease. That knowledge can be poured into improving the GAD treatment or other treatments.

If GAD is ultimately proven safe and effective, and approved by the FDA for routine prescription, it will provide those families faced with a T1 diagnosis some immediate hope. Right now there is none.

When Shelby was diagnosed nine years ago, we were informed that she had a chronic autoimmune disease for which there was no known cause or cure. This diagnosis is becoming more and more common, growing at a rate of about 2% to 3% a year across the globe. If GAD is effective, families will have the option to take a series of shots to buy a little more time before the disease gets really scary. It will eliminate or greatly reduce emergency hospitalizations due to hypo- and hyperglycemia. It will make life better for those youngsters facing a lifetime of living with T1.

My part starts Friday on the 6th floor of the UCSF Children's Hospital. It's been 63 days since I was diagnosed (D+63).

Passport Punched in the Low Lands

2010-01-31T22:51:00.000-08:00

Welcome to the lovely land of low blood sugars!

You'll experience dizziness, uncontrollable shakes, a sense the world is moving in a weird kind of slow motion and, perhaps, a bit of nausea. But wait, you'll get some really yummy orange juice and maybe a cookie, just like after you donate blood.

My initiation came yesterday while I was out ripping out the carpet of weeds that sprang up in our garden beds in the recent rains. I'd cleared the bed next to the apple tree and picked the weeds from around what has to be the heartiest leaf lettuce on the face of the earth! While I was working on the garden path I stood up a bit too quick and got that lightheaded feeling we all get from time to time. But after a few minutes, it didn't pass. Instead, my legs and hands started twitching a little bit.

"This isn't good," I thought. "I'd better get inside & check myself."

The glucometer read "54."

There's juice in the fridge, I thought to myself. The glasses are in the cupboard. I need at least 8 ounces. The kitchen seemed to be filled with really thick air that felt more like water in my way; I could almost see it rippling. My legs were weak and my hands unsteady. I poured out the juice and drank it down quick. Then a second glass. Sixteen ounces worth 54 carbohydrates slammed in 20 seconds.

I found Shelby playing Barbies in her room. "How long does it take for juice to kick in when you're low?"

"'Bout 10 or 15 minutes. Why?"

"I'm 54."

"Oh oh."

Lunch. I need some lunch. The kids left two pieces of pizza in the fridge. I slapped together a peanut butter and banana sandwich and sat at the dining room table. Shelby continued playing Barbies. Alex was outside. Liz was sick in bed.

Fifteen minutes later, I was 154 - high now. I shot insulin to cover my lunch then headed back outside to finish up the yard work.

Today, I punched my T1 passport in the low lands again for the second time in two days. After church, I was 64, while I was making pancakes for lunch. Another shot of juice got me through the cooking. I didn't even feel that goofy today. Maybe I'm getting used to this?

The onset of low blood sugars is just another step in my journey. There will be highs, like the 164 I woke up with after enjoying maybe too many really gooey, fudge brownies. And, now, there will be lows. A hallmark of the honeymoon period of early diagnosis is a kind of inoculation against low blood sugars. They are possible, but unlikely.

If my lows become more regular, perhaps my honeymoon is ending, too, at D+60.

Passport, please. Enjoy your visit in the Low Lands. Here's some juice.

Counting Mini Wheats & Checking Boxes

2010-01-22T22:36:00.000-08:00

"How are you doing with your diabetes?"

It was a routine question by a seasoned clinician in one of the world's leading pediatric diabetes research programs. But I couldn't really answer the seemingly simple question. How am I doing with my diabetes?

It's really a journey composed of a series of seemingly independent realizations.

I need to order a medic alert bracelet
I count my Mini Wheats every morning (24 equals 44 carbs. With milk that's about 60 total. 3 units of insulin)
When I renewed by driver's license online the other day, I was required by law to disclose my recent diagnosis
It's really hard to find a convenient way to carry my BG test kit and insulin pen
I checked my blood sugar before going into a meeting recently in the administrative conference room but my finger wouldn't quit bleeding. I explained to a concerned co-worker that it wasn't a paper cut.

Celia Hamilton, the coordinator in charge of participants in the TrialNet GAD Trial at UCSF, called to confirm my recent appointment. As she was reminding me not to eat after 10 p.m. the night before and some of the basics of the test, she asked if I was bringing anyone with me. I told her I wasn't. "So you feel comfortable driving in a fasting state?"

I'd never, ever given that a second thought. "Uh, should I be worried about this?" I thought. It was a minor moment of epiphany. For nearly three years I'd driven to UCSF once every 6 months after fasting for a glucose tolerance test. It's no treat, but I'd never once thought that someone else should drive me. Should I get Liz to drive me to my appointments, or find a series of public transit options to get me there? Am I some sort of danger on the road now?

I drove myself, as I had many times before. My BG was 142 when I left the house; it was 128 a couple of hours later when the test began.

So how am I doing with my diabetes? It's D+52 days on this journey. I'm counting my Mini Wheats, checking new boxes on forms, jotting down everything I eat, and really happy that it's supposed to be sunny tomorrow.

Eh GAD!

2010-01-12T23:44:00.000-08:00

Tomorrow, I go to the same UCSF Children's Hospital out-patient clinic where I was diagnosed with Type 1 Diabetes 44 days ago to see if I qualify for a clinical trial into a medical treatment that may, one day, reverse Type 1 Diabetes.

It's called the GAD Study, named for a protein that is attacked during the autoimmune function that wipes out the insulin-producing beta cells located in the Islets of Langerhans of the pancreas. For reasons that are not yet understood, some combination of genetic predisposition and an environmental trigger causes this autoimmune cascade to begin. But it doesn't happen all at once. Insulin production is eliminated over a period of time, dubbed the Honeymoon Period.

The concept of the study is enticingly simple: Maybe repeated exposure to glutamic acid decarboxylase (GAD) can slow or reverse the body's attack. It's the same concept behind every vaccine - expose the body to an antigen repeatedly so the patient's system can react appropriately if the antigen is experienced again. In this case, repeated doses of the GAD protein may train the immune system that it's not an invading substance that needs to be attacked.

Here's how the study team explains it:

There is evidence that if the body is exposed again and again to GAD, the immune system will learn to tolerate it, and the autoimmune attack on beta cells will lessen. This is called “peptide-induced tolerance.” (A peptide is a short piece of protein.)

Initial study results show that it works, at least for 12 to 16 months. That's how long the Honeymoon Period of patients receiving three doses of GAD starting within three months of diagnosis has been extended. There's another study that tries to extend it even further.

But before I get to that study, I have to see if I qualify for the GAD Study to begin with. That's why I'll go to the clinic in the morning on an empty stomach, down a can of Boost, and have my blood drawn for testing over the next four hours. The Boost has got to be better than that thick glucose syrup they gave me as part of the TrialNet natural history study I was in before. They do give me lunch and free parking, so it's not all bad.

Actually, if I qualify I have a two in three chance of being in the group to actually get the GAD injections, and, hopefully, a bit longer time of some insulin production and fairly easy to control blood sugars. Worst case: My T1 goes ahead and develops as it would anyway, but doctors get more information that may result in an actual treatment someday for young kids like Shelby.

Thanks for the gifts, 2009

2010-01-08T23:05:00.000-08:00

2009 was a year of gifts.

Our jobs, house and family are all still intact during perhaps the worst recession of our lifetime.
Liz is healthy after an emergency hysterectomy over Labor Day weekend, and will resume teaching Jr. Jazzercise after Winter Break.
My children are happy, healthy and developing into tweens more and more each day. They did great at their winter recital, and continue to work hard developing their dance and social skills.
I'm showing no T1 symptoms and will soon be screened for a new clinical trial that could extend my honeymoon period for up to 16 months.

Despite all the horrible national predictions and the personal challenges 2009 brought, we enter 2010 in a position to continue to progress toward our goals as a family together.

We've also received a reminder that tomorrow is not a guarantee, and that the world as we know it can change in an instant. Clu Cotter, a long-time friend, was killed in a helicopter crash this week while doing a deer survey for the California Department of Fish & Game. We'd known Clu and his wife Marni when we were all young, dating couples. We've been through engagements, weddings, children, job changes - so many of life's steps together. Now, Clu is suddenly gone, and we need to try to figure out how to help a friend who is suddenly a widow with two young children to raise alone.

Whatever challenges lie ahead for me and my family, we are still lucky enough to have each other everyday. I feel blessed to have a challenging and rewarding job, good health insurance, great children, a fantastic wife and best friend, and the opportunity to wake up tomorrow for one more day.

Girl Diagnoses Own T1 Diabetes

2010-01-02T15:44:00.000-08:00

I guess I should be impressed that this girl was so aware and determined that she diagnosed her own T1. But part of me can't help be a little disappointed by the adults in her life.

Kris Freeman: A T1 Athlete to Watch

2009-12-29T20:53:00.000-08:00

I've always been inspired by top athletes with Type 1 Diabetes (aka T1)! But now I feel a new kinship with them.

Here's part of the story from the Globe and Mail:

Up and over snow-covered hills, along every flat section and straight on to the finish, Kris Freeman is dogging history, nipping at its very heels. As many have suggested, he could become the first American cross-country skier in 33 years to win an Olympic medal in a sport dominated by Scandinavians and Europeans.

But that's not all Freeman pursues. To set a new standard, to become the first Type 1 diabetic to win an Olympic medal in an endurance event, that's the glory that pushes Freeman up those hills and all the way to the Vancouver.

"I want to win a medal," Freeman said of his 2010 ambitions. "Not just for me but to show others it can be done."

If anyone can make diabetes cringe, it's the indomitable New Hampshire snowman. Twice, he has been hobbled by compartment syndrome, a painful condition in which the muscles in the shins outgrow the fascia because of overuse and stress. Twice, he's had his legs operated on and faced arduous rehabilitation. And just before the 2006 Turin Olympics, Freeman was sapped by a flu bug that limited his best showing to a 22nd-place finish in the 15-kilometre classic.

Yet through all the setbacks, Freeman has laboured on, powered by determination, renewed by success until now, at 29, he has become both an Olympic medal contender and one of the Games' most compelling stories.

I'll share this type of thing from time to time because we all could use a little inspiration!

D+21:Pushing Insulin

2009-12-23T06:34:00.000-08:00

The devil may wear Prada, but he serves brownies.

I love brownies, and they are everywhere this time of year. I sorta lose control around them and eat them by the two or three at a plate, then go back for more. In years past, that's been a WeightWatchers problem. This year I'm having an insulin dosing problem.

Not only do brownies often appear at the office or potlucks without labels at all, they can vary widely as to what's in them. The really good gooey ones tend to have extra chocolate thrown in, some actual fudge bits. If you find a package for a batch, the portion sizes are so helpful: something similar to '1/24th of a package.' They also have a pretty high fat content, which helps them taste so good!

Last night, I had a big pile of brownies and dosed up kind of a lot to cover them. It was only 5 units but it kinda burned under my skin; not sure if I put it in wrong or not. Went kinda high overnight. Well, high for me.

I have discovered a new logistical challenge related to using my insulin pen and fashion. I wear lots of long sleeves and long pants. My injection sites are all covered most of the time, particularly right now when it's so cold in the office that I often wear my Mr. Rogers cardigan to keep warm. So giving an injection involves at least partially undressing, a trick I haven't learned how to do gracefully yet in an office setting. So, I'm back in the restroom, where I can access my belly a little more privately.

So does Prada make brownies? Even devil's food cake?

D+18: Pizza & Insulin

2009-12-20T08:48:00.000-08:00

My kids did a great job last night in four numbers in their winter dance showcase. We celebrated afterward with my aunt, uncle and mother-in-law with a fun pizza dinner. When I got home, I gave myself my first insulin shots.

My endocrinologist wanted me to start covering 20 grams of carb at mealtimes with 1 unit of insulin. The idea is to give my failing Islet of Langerhans an assist with some extra insulin. For a week, I've been tracking how my body metabolizes food so I had a baseline of information that I could compare later to similar records that include insulin injections.

In prepping for this day, I consulted my family expert on self-injections. "It's all about the angle of projectory," Shelby explained. "You've gotta hold is straight like this." (demonstrating with her right hand on her left upper arm) "If you do it like this," (showing a severe angle) "then it won't go in right and it won't work."

"It doesn't really hurt," she said. "You've just gotta do it quick."

The needle on the insulin pen is so tiny that it doesn't hurt at all. In fact, I'm more concerned that it actually went into my skin and delivered medicine at all.

My this morning my 185 BG was back down to 120 after 4 units overnight. I dosed myself at breakfast this morning as my doctor suggested: 2 units of insulin for my 40 gm of carbs worth of toast.

All of this tracking and thinking really does impact how much I eat. There's a powerful reason why journaling is an essential part of WeightWatchers. If every time you 'bite it' you have to 'write it,' you automatically have to think: "Do I really need this?" Add onto that an immediate medical implication, and you have a powerful mix of thoughts and emotions that go into that banana and yogurt snack.

This does pose a new logistical challenge. The insulin pen and needles are another batch of gear that I need to figure out how to carry around with me. I'm going to need to come up with a kit of some kind.

But I refuse to carry a European shoulder bag.

Diagnosis + 12 Days: I've got a long way to go

2009-12-14T19:10:00.000-08:00

It's been 12 days since I was diagnosed with Type I Diabetes.

That reality has hit me harder than I'd ever imagined it would. I'm much more emotional about it than I anticipated. After all, we - as a family - have known Type I since 2001. I know what to do: poke with the lancet, test, track, treat with insulin. But I'm learning the difference between knowing it, and living it. It's different at the business end of the lancet.

On Sunday, Pastor Mike made reference to my diagnosis during his sermon. "Scott recently learned he has Type I Diabetes." I had momentary tunnel vision; a feeling of near panic. I nodded almost reflexively. It was a combination of nouns that I'd never heard before. That's me .... with diabetes.

All those things that I know in my head aren't about them or her any more, they're about me!

I was checking my blood glucose at work with my new meter before lunch. At first, I went to the restroom to use it, not wanting to alarm co-workers who might walk into my cubicle. But it felt like hiding in there, and what exactly was I doing in there, anyway? When I tested at my desk later, I still felt folks might have questions about what was going on. So I decided to tell a couple of my colleagues who work closest to my desk.

The words "I have diabetes" caught in my throat. "I was diagnosed recently with diabetes," came out. They were terrific; understanding and sympathetic as I knew they would be. They had questions of course, which I answered for them. I work with some wonderful folks, and they said all the right supportive things that helped me feel better. Really, I just wanted them to not be surprised to see me using my BG monitor at work. I guess I still need to talk to Donna in admin about updating my emergency contact info.

So there I was checking my BG before lunch, and making a note. Then again two hours later, and making another note. In between, eating the lunch I'd packed earlier with the carbs all noted on my tracking sheet, the one I'd modified from Shelby's by changing the name at the top. This is my routine now: checking and noting, checking and noting, on and on and on and on.

It's been three days and I'm pretty tired of it. Shelby's been doing this her entire life, pretty much without complaint. How many mornings have I asked her, as if she were choosing shoes, "Ready to write down your lunch?" As she took her pencil in hand, I'd call out items and numbers like a commodity broker: sandwich 36, chips 19, apple 10, HoHo 18, almond milk 12 ... or was that 10 ... let me check the carton .... it's 12.

Now my lunch and dinner and breakfast and snack and impulsive handful of M&M's is a series of numbers, too. The neat rows of boxes will reveal a pattern that will result in another number to indicate how much insulin I'll need to start giving myself soon. Where am I going to carry all this gear?

For years, Liz has called Shelby her hero. I've always felt the same way, but I'm getting a much deeper appreciation for what that means. All the things Shelby's had to do. All the things we've asked her to do. Everything that she's done herself since as a 3-year-old she took the lancet from our hands and said, "I want to do it." Day in, day out. At school. At Disneyland. At birthday parties. And all without any self-consciousness or self-pity. It's just her life. The one I passed along unwittingly to her, and now share myself.

I hear of parents who see their grown children in a professional setting as a doctor, lawyer, teacher, and who see them suddenly in this new role. They are so proud of what they've grown up to become. Is it too early to feel that way about an 11-year-old?

Last night at dance class, Shelby's continuous glucose monitor was acting up. She ran over twice in the middle of learning the steps to do manual checks, enter the numbers then get right back in step, only to have the insulin pump send another alarm 10 minutes later. She just did it without skipping a beat. That technology, no matter how faulty at times, is making her life better.

I've gone through my second vial of 25 test strips. I'm concerned about alarming co-workers. I have yet to give myself one injection. I've got a long way to go. But first, there's Day 13.

A New, But Familiar, Path

2009-12-11T16:29:00.000-08:00

"You've crossed to the other side.... You've reached the goal line..... There's no easy way to say this...."

One of America's leading diabetes researchers was on the phone, trying to gently break news that I suspected might come one day.

Dr. Gitelman's hesitancy and effort to be gentle was understandable. A major focus of his career is unraveling the mysteries of a chronic disease with no known cure or cause. Dr. Gitelman and his colleagues have learned how to see Type I Diabetes coming, like a slow-motion trainwreck that is impossible to stop, avoid or recover from. Probably more often than anyone would like to discuss, Dr. Gitelman has to tell someone new that they've got it.

That was his message for me that day: I have Type I Diabetes.

"Ok," I said calmly. "So now what?"

After nearly three years in a global diabetes research program designed to learn how this autoimmune strain of diabetes arises, I knew I had a 70% chance of developing it. For some reason, my body could attack the islets in my pancreas that produce the insulin needed to metabolize food properly. I'd watched my daughter live with Type I since she was 2 years old. I knew, academically, tons of data about the disease. But now, it was in me, eating away at my body's ability to create insulin. No one knows exactly why. No one knows how to stop it.

Dr. Gitelman & I talked for the next few minutes about how to loop in my insurance company, his recommendations for endocrinologists I should see, and a new study into slowing the progression of Type I Diabetes that I was now eligible to join. We exchanged best wishes. He told me I could call whenever I wanted. I replaced the handset on my office phone.

So what's this really mean? Is this really my life? I thought to myself.

There were more questions:

Should I start checking my blood sugar?
What's a low BG feel like?
Is Kaiser going to be OK with the fact I've been in this study and didn't exactly tell them?
How many shots a day are we talking about?
Am I going to get an insulin pump like Shelby's?
Is this going to get really, really serious soon, or is it going to take months or years?
Is that little stitch in my side part of diabetes, or just me being me?

I've learned quite a bit in the 10 days since that call:

First, I have no symptoms ..... yet.
My morning BGs run pretty high.
I need to track my carbs, just like Shelby.
Checking BGs hurts.
Shelby's diabetes team really is awesome helping get new patients to the right doctors.
I'm in the very early stages - they call it The Honeymoon - so I'm in more danger of high BGs than lows.
My new endocrinologist - who I met today - is terrific.
My pancreas makes a basal level of insulin and I'll likely have to use my new insulin pen only around mealtime, at least for a while.

I don't think it's really hit me yet what all this means. As the father of a child with diabetes, I felt it was my responsibility to do everything I could to help her, learn all there was to know, forward scientific understanding of her disease, and ensure she can lead a long and healthy life to achieve all her goals. For nine years, this has been her disease. Now, it's mine, too. And I, essentially, gave it to her.

In the coming days, months and years, the answers to all my questions will begin to reveal themselves like the layers of an onion. My habits will have to change in ways I can't fully foresee. I'll have more gear to carry around. I'll have to learn to listen to my body in ways I never have before.

So far, it seems similar to getting the news that Liz & I were going to have twins. Nothing really changed immediately. Then, slowly, surely and irreversibly everything changed.

Dr. Gitelman said my experience with Type I Diabetes will be different than Shelby's. But he couldn't really say how. Today, Liz asked if we should change the name of Team Shelby, our family effort to fund raise for the Juvenile Diabetes Research Foundation. Maybe we can just change the logo a little bit, she said. We have time to figure that out, I said.

Life is indeed an unpredictable journey through time, space and experience full of twists, turns and new paths to explore. For some reason, I needed to develop Type I Diabetes. I'm sure I'll learn why someday.

Thankfully, I have a mentor, a guide to hold my hand on this new path ... my own 11-year-old daughter.

I'm Thankful For......

2009-11-26T04:54:00.000-08:00

My wonderful wife Liz, who after all our years together still thinks I'm mostly funny and remains my best friend.
My daughter Shelby, who inspires me daily with her bravery, courage and enthusiastic embracing of life's adventures.
My son Alex, who's developing quick wit and incredible mind inspires me to try to be both a little better and little more understanding each day.
The traditional Thanksgiving Day "Huff 'n' Puff Before You Stuff" Jazzercise class. (I'll get back to you after I take the actual class later today!)
A challenging and stable job in these uncertain times.
A warm home stocked with all the essential comforts and food sufficient to keep Weight Watchers in business.
Dr. Steve Gitelman and all those associated with the pediatric diabetes clinic and TrialNet research at UCSF. Working daily to push the leading edge of the world's understanding of Type I Diabetes while everyday working with children and families who are newly diagnosed with this currently uncurable chronic disease is a noble endeavor I appreciate beyond proper ability to express.
"A Charlie Brown Thanksgiving." We'll have at least one annual screening this year featuring at least one rewind on the scene where Snoopy and Woodstock are setting up the Thanksgiving dinner.
Holiday dance competitions put on by the kids that may be branching out into impromptu music and voice recitals, too.
My paid-for, reliable and boring commuter car that gets like 34 miles to the gallon.
A handful of good friends who are always there when we need them, and the willingness to prove that over and over again.
Starbucks! First, a billion locations. Then more drivethrus than humanly necessary. Now instant VIA. Can't wait for the Starbucks I.V!
Affordable health insurance that pays for all the basic stuff, and the advanced medical devices Shelby needs to live a healthy and safe life.
My church family that offers support and challenge as each are needed from time to time.

All the families and staff associated with the JDRF for working diligently and selflessly to continue to grow as the world's leading non-governmental funder of Type I Diabetes research.

Each and every member of Team Shelby.
Our backyard garden that Liz worked so hard to set up, and inspires us all to maintain and improve. (First garden winter! Can't wait for spring!)
The men and women who fly, maintain and otherwise support all those big transport planes flying into, out of and around Travis Air Force Base everyday. Their commitment, the sacrifice of their families and the solidarity of all their comrades in uniform are a national treasure. I continue to pray for national leaders wise enough not to squander their lives for trivial causes.
Facebook. (You know why.)

Inauguration Day

2009-01-20T04:50:00.000-08:00

It's going to be an interesting day.

A totally new face is going to be looking out across out country from the White House today. Not only is our new president not white (though he is, at least partly), he is someone that looks an awful lot like me - a 40-something father of two with a wonderful wife who would do wonderfully well on her own yet they are a team.

Yesterday was Martin Luther King Jr.'s birthday. There was a lot of local news coverage about the events of the day, and the unavoidable nexus between the promise that Dr. King saw and advocated and the election of President Obama. People are really, really excited about seeing - some 45 years later - the fulfillment of what I'm sure many saw as a pie-in-the-sky vision of what could be. Now my generation, the generation raised under the promise of Dr. King. The generation that watched his speech in elementary school and knows all too well what happens to visionary leaders in America, we have our own visionary.

My excitement over the "Yes We Can" vision is tempered this morning with a fear that in America our track record for embracing new vocal leaders is not good. In the 60s, we saw the killing of John F. Kennedy, his brother Robert Kennedy, and Martin Luther King, Jr. I hope beyond all hope that those who trade on hate and anger will not rise again to mar this latest new start in America. Because we really need a new start.

I find it ironic that a popular young Democratic leader calling on the virtues of personal responsibility and accountability is coming to power on the heels of an eight-year Republican administration that basically gave away the national store. We're the Republicans supposed to be the pull up your own boot straps, you'll make it on the sweat of your own brow, government can't do everything for you folks?

We elected President Bush as a uniter from Texas who would work across party lines to make America a better place. Almost immediately that nation was attacked by terrorists, a key opportunity to unite the nation. But oddly, the nation became more divided. Ideology took over for politics. Anyone who dared ask, "Why?" was a traitor in league with the terrorist axis of evil arrayed against our great country. We put in place a new security apparatus that got all of us used to taking off shoes and belts and somehow bit more just to get through an airport. We got a country in which the government - in the hands of the folks who once professed to love smaller government - expanded their influence into every part of our lives, and wouldn't even tell us exactly what they were doing with a "trust us" attitude of a father spying on his children.

Of course, there's the war in Iraq started to end a threat we now know never existed ostensibly in pursuit of terrorist Osama bin Laden. (Historical note: The most powerful military force on the planet has yet to capture or kill the one person on the planet it holds directly responsible for the deadliest attack on our nation ever!) For a nation at war, I've had a hard time feeling it. My president has asked me to be patient with him while he peels back my rights and to go shopping in the national interest. We haven't been permitted to witness the impact this war has had on our fellow citizens, as news coverage of military funerals is very few and far between. This is something happening somewhere else to someone else.

Finally, Bush bestowed upon us the final success of the trickle down economy based on credit cards. I really appreciate some testimony from Alan Greenspan, former Fed Chairman, when he reflected upon the current economic meltdown. A key fault he found in his own reasoning was his faith in the basic premise that those in power at the largest corporations would behave in ways to perpetuate the success of their own organization. Instead, those leading America's corporations figured out it was a game of "Wanna Be a Millionaire? Heck, a billionaire?" A key tenet of free enterprise capitalism is that in behaving in their own self-interest those who operate successful businesses will contribute back to society in ways that supports the larger social structure. It's Henry Ford's old line that he wanted to ensure that his own workers could afford to buy the cars they were making. Those who work hard and risk much to build successful businesses should live well; they've earned it. But shouldn't they also make sure the workers who helped them get there can afford to buy a piece of the American dream themselves? Instead, the entire nation - from Congress to Sacramento to our own mailboxes - was issued credit cards. We borrowed for everything! Do you realize that China and Saudi Arabia and all these countries we have concerns with overseas owns a huge percentage of the debt we as a nation have taken out? Now, with top executive floating on their golden parachutes, the economy in shambles and families losing their homes left and right, the Republican president has spent the last days in office doling out government bailout checks to the very corporations he expected would do the right thing, but didn't.

So now, it's a new day of personal responsibility for real! If you aren't planning your own future, it's not being done. Your company has killed the 401(k), once Bush's model for the social security program. "Yes We Will" is less of a political rallying cry as it is an imperative for moving ahead at all. With so many hurting and our social structures frayed, it's a liberal Democrat urging people to reach out and help their neighbors and community through their local churches and community groups. The message is as it always should be in America - We, together, can make it happen. We may have disagreements, but we all need each other to succeed.

I grew up in Pasadena the son of a teacher and a police officer. I was bused across town to racially integrated schools where I was taught that you judge a man not by the color of his skin but by the content of his character. Today, I see myself moving into the White House and seizing the reins of power. This is my generation, all hopped up on caffeine, Blackberrys and Facebook. Let's see just what we can achieve.

We Ran Out of Coffee

2008-12-07T07:42:00.000-08:00

It happened on Wednesday. I scraped the last of the rough-ground Starbucks coffee from the bottom corner of the Ziploc we keep in the freezer. Just enough to make one, maybe two cups. I had seen this coming on Tuesday, and went to the pantry we keep in the garage to retrieve the next can of coffee. But the proverbial cupboard was bare, of coffee at least.

I scrawled "coffee" under the Costco heading on the shopping list. Payday wasn't until Friday. I knew the schedule didn't look good for the days ahead, but I'd be OK.

One of the great things about working at Suisun City is the seemingly endless supply of coffee. It comes in two types: office Columbian & office Kona blend. Some might consider decaf a third type, but decaf coffee doesn't really count. I mean, it's warm and tasty with a little creamer, but it's more of a coffee-like drink. So the rest of Wednesday, Thursday and Friday I had covered. Office coffee - probably a lot more than I should have - would save the day.

This week, I was contacted on my Facebook page by a friend from Cal State Northridge days. Val was there for the budding of my coffee-drinking habits. It was in college that I turned to coffee to keep me warm on cold study mornings, keep me awake through thrilling and gripping lectures, help me through those afternoon classes, help me make it through my evening shifts at the hospital and Denny's, and to sharpen my editing skills while working at the Daily Sundial - the campus student newspaper.

In those pre-Starbucks days, coffee wasn't about quality, robustness or exotic flavors. Quantity ruled the day. 7-Eleven marketed the Coffee Tanker. I don't think that was the official name, but it could have been. It was the biggest cup of coffee ever - and all for 50 cents! Of course, the food service folks at Cal State Northridge had to keep up, so they'd sell these huge cups (they had to be 64 ounces) of coffee at the popular student hangouts on campus. And the coffee urns would empty fast!

So, I was working through my recent coffee crisis well and sticking to our budget discipline. We're within arm's reach of getting totally out of consumer debt (except for the Honda CRV), so we're committed to getting there. Until Saturday.

I didn't really realize the state I was in until about 10:15 a.m. Saturday when I realized I wasn't operating a simple hand-held calculator very well. I was working my usual Weight Watchers meeting, and found myself punching in members' weights over and over into this calculator to come up with their losses for the week. It carried through the meeting and over to the fax machine afterward, when it took three tries to correctly fax in the meeting stats. Something was seriously wrong with me. I was just out of it.

Out in the cool sunshine after the meeting as a familiar pain shot through my eyes, I realized my problem: It was 11:30 a.m. and I was without any coffee! I had no cash! But Liz & the kids had done the usual Saturday morning donut run and I could share Liz's quad-shot, non-fat Starbucks confection of the day at home! When I got there, nobody was home. They'd gone to Larry's Produce up in the Suisun Valley and taken the quad-shot, non-fat Starbucks hit with 'em!

Luckily within 30 minutes or so, they came home and I "shared" Liz's quad-shot, non-fat Starbucks drink with her by drinking three-quarters of it in about five minutes. Hey, she'd had the first quarter of it when it was still hot and fresh! I was just finishing it up so it wouldn't go to waste!

It's Sunday. We still haven't made it to Costco. I think we go today after church. I made it through my coffee-less Saturday. But I did turn to tea, I'm having a cup this morning while I write this. It's not bad, but it's not coffee. Even if we don't get to Costco, I do go back to work tomorrow where the endless stream of office-coffee awaits. Hopefully, nobody puts plates of holiday cookies at the coffee station!

Happy Veteran's Day

2008-11-11T10:26:00.000-08:00

It's a day of gratitude for all those who have served in America's armed forces. The sacrifices our men and women in uniform have made, continue to make and will make in the future can never be adequately appreciated by those of us who never wore the uniform. We get glimpses of what their lives of service involved, but can't really know what they've been asked to do.

We should also not forget the sacrifices their families make to support their service, from moving frequently to posts all over the world to enduring extended periods of excruciating uncertainty and fear as their loved ones are sent into harm's way with only the most scant communications.

I was born in 1967. The Vietnam War was at full-scale. My father was serving in the Air Force Reserve while attending college. He didn't really talk about any of his experiences. We weren't really close to my uncles who served in the Navy and Army. They served in mostly support roles in the 70s and 80s in European bases, I think. I didn't grow up feeling any personal connection to our combat troops. I remember registering for selective service at 18 and then watching the Persian Gulf War unfold on TV in my early 20s wondering if the draft was going to be reinstated and I would get a call. But that call never came. I worked as a newspaper reporter near Vandenberg Air Force Base where I met many of those serving in the Air Force, but they seemed to be like every other professional I knew who went to a job every day and came home at night.

I respect those who we, as a country, send into the worst possible circumstances to do the killing that our leaders determine is necessary. It's terrible that we need people with that expertise in our world, but that's how we as humans have decided to settle our ultimate conflicts. It's awesome to understand there are fellow citizens willing to do that work for our nation. I call them the "true believers." Americans willing to lay down their lives if necessary to support and advance the objectives our leaders lay out. These are some of the most dedicated citizens we have. My ongoing hope is that our leaders are wise in how they use this most precious resource. I hope that the strategies, goals and objectives we ask our military men and women to pursue are absolutely necessary. I hope there is no other option than to risk life and limb. I trust and hope that our military men and women have the best training and equipment to carry out their objectives, and aren't left in harm's way one moment longer than necessary.

President Bush has spoken often that we are a nation at war. I think the problem with that assessment is that we, as a nation, haven't been allowed to see the results of that war, both positive and negative, and grieve those we've lost. Neither have we needed to make any particular sacrifices to support our armed forces, other than take on huge amounts of national debt that we don't fully understand yet.

As I hung the flag in front of my house today, I took a moment to reflect on what Veteran's Day means. I was left with a sincere hope that the results of our current wars are worth the extremely high cost to millions of people all across our country.

Never Give up Your Dreams

2008-10-27T23:17:00.000-07:00

We were watching The Biggest Loser tonight through the power of TiVo. One of the contestants who was recently sent home, commented that she had given up on lots of dreams for her son and herself when he was diagnosed with autism. From what we could tell through the show, he appears to be very highly functioning, and about 8 or 10 years old.

Giving up my dreams for Shelby and our family never even crossed my mind when she was diagnosed with Type I Diabetes just before her third birthday. In fact, my wife Liz and I were determined not to let a little thing like an incurable, chronic disease stop Shelby from doing anything she wanted to do and being just what she wanted. Instead of giving up our dreams and expectations, we were motivated to do everything we could to insure that Shelby could achieve to the best of her abilities.

We took the same approach last year when Alex - Shelby's twin brother - was diagnosed with Asperger's Syndrome, a form of autism that manifests mostly in a difficulty in handling social interactions.

Neither of our children are disabled or have a handicap. They both just have obstacles and challenges they need to address to live a successful life. Shelby must constantly manage her diabetes to protect her future health. Alex's brain just works different than most of us; while dealing with friends and social situations is hard, he can memorize nearly anything easier than anyone I've ever met.

Both of my children are a wonderful part of my life. I have high expectations and lots of dreams for them both. My job as their Daddy is to ensure they have dreams for themselves, then give them the boost they need to get there.

Never ever give up on your children's dreams. If you don't believe they can do it, how are they ever going to first believe it themselves, then make it happen!

Starting over

2008-10-19T21:49:00.000-07:00

It's been busy around the house lately. Not the overwhelming, out of control type of mania, but the excited, anticipatory bustle of something really great coming.

Next Saturday is the Walk to Cure Diabetes at St. Supery & Peju Vineyards in the Napa Valley, California. It is our local walk to support the work of the Juvenile Diabetes Research Foundation. We've participated in the walks - first the East Bay walk in Walnut Creek, then this North Bay walk - for six years. We started the year after Shelby was diagnosed.

It's a day for friends and family to come together in our joint effort to see Type 1 Diabetes cured. The purpose of the walk is to raise money. But it also is a way for those close to us to show their love & support in our day to day struggles with the mundane work behind managing a child's insulin-dependent diabetes regime.

This weekend, my wife Liz led the warm-up at the JDRF walks in San Francisco and the Silicon Valley. It was tremendous to be involved in those walks we've never been to before, and to be reminded of just how many people are touched by Type 1 Diabetes.

Liz and Shelby went to the San Francisco walk by themselves on Saturday because Alex and I were at his dance competition at Discovery Kingdom in Vallejo. His team - Powerhouse - won first prize in their division! Just part of the craziness I referred to earlier.

This weekend, Liz's niece Amanda and her girls are coming up from Lompoc for the walk! We haven't seen them in a long time, and the girls love hanging out with Shelby and their Tia Liz!

This blog is actually a restart for me of one I started some time ago, but didn't keep up very well. I think mostly because I put a lot of pressure on myself to be really profound or insightful. But life isn't always that way. So, I'm restarting my blog - linked to the main Team Shelby blog and a research blog that I keep updated with the latest developments in Type 1 Diabetes research. I will be adding lots of features and fun stuff to this blog over time. Hopefully, soon I'll set up a way for you to subscribe to feeds, but until then bookmark me and come back often.