Daddybetes

Bouncing Back (hard)

2013-04-18T14:54:00.001-04:00

Last October Cassie's sinus infection turned to pneumonia. Then she got the flu. Then she had a persistent fever. For three months.

We've been in and out of the hospital and seen a battery of specialists. Six months after the first sniffle, she's still not up to her bright and bushy self. It's worried us and frustrated us to no end.

Still not sure what's going on, but the best explanation is that she's been through the wringer and is healing sloooowly. But like a flat basketball, it's been hard for her to bounce back. She's utterly exhausted and her body is run down.

We'd always heard that diabetes could make you more susceptible to things. It makes it hard to recuperate too. Especially after a big ol' one-two punch. Keep her in your thoughts.

Nutrition Survey for Teens

2013-02-14T11:20:00.000-05:00

It doesn't take a rocket scientist to figure out that knowledge about nutrition leads to better diabetes control. Or does it?

All too often, we rely on assumptions and guesses. The only sure way to know is research.

One of our community members at TypeOnenation.org (formerly juvenation) is a graduate student at McNeese State University and is conducting a survey about nutrition counseling and T1D teens (ages 10-18). The survey is for the parents to fill out. It only took me a whopping 3 minutes to zip through. No personal information is gathered. So give our budding researcher Ashley a hand if you can by taking part. Here's the link: http://www.surveymonkey.com/s/QH57FGQ

Monday Morning QB

2013-02-04T12:58:00.000-05:00

I'm absolutely amazed at the flurry of analysis after last night's Superbowl game. Every sports show obsesses over one big question: "What if...?" What if the power in the Superdome hadn't cut off for 34 minutes? What if the Ravens had been called for holding on a fourth down play in the endzone? What if Joe Flacco had been injured in the playoffs?

I guess we're all prone to placing an inordinate amount of attention on hindsight. As we manage diabetes, we constantly second guess ourselves with questions like: "What if we had bolused more for that baked potato," or "What if we hadn't switched to formula so early," or "What if we had checked at 4 am too?"

We beat ourselves up with all these after-the-fact insights. Like football, Diabetes isn't a game of perfect. You just need to make sure you show up, work hard and stay in the game.

MMMMM...Bacon

2013-02-03T16:53:00.000-05:00

Superbowl Sunday gives everyone an excuse to make a momentary lapse in their resolutions to eat healthy. The potato chips and nachos come out. 10-piece buckets "go boom." Anything that can be slathered with barbecue sauce is slapped on the grill. This year the network news reported on an impending chicken wing shortage for the big game.

Just because you have to deal with T1 diabetes doesn't mean you have to excuse yourself from all the fun. You just have to be smart about it, and remember to take insulin.

Like her daddy, Cassie has a primal love of bacon. What is usually a low carb (but high fat) food has been exquisitely transformed into a magical gastronomical delight by my vegetarian(!) wife. Below is a snapshot of pecan-caramelized bacon appetizers. It's fitting for a night watching the pigskin, as long you bolus properly for it.

Mmmmmm...Caramelized Bacon for the Big Game

T1D: All in the Family

2013-01-30T13:15:00.001-05:00

Cassie, Papa, Mom and Uncle all have T1D

It's unfortunate when I hear of families that have more than one family member stricken with diabetes. It's like that old gag where the comic says, "at least it's not raining," and then a cloudburst erupts.

Yet...

I'm heartened when those very families tell me stories of meeting and overcoming their (multiple!) challenges. No matter how much gets thrown at them, silver linings eventually appear.

In the latest JDRF Annual Report, they feature our family because of our multi-generational T1D connection. Marinda has had type 1 diabetes strike both her maternal and paternal sides of her family tree. It's not something we're happy to be famous for - but I hope we can be a good example of how you can still have full lives, despite the disease.

The lesson we'd like everyone to learn: that you can and need to take action so future generations don't suffer the same fate.

You can check out the JDRF article here: http://www.jdrf.org/files/General_Files/2012annualreport/reason_31.html

A Diabetes Resolution

2013-01-29T18:03:00.001-05:00

Before January is over, I think it's important to set a yearly goal. Lots of people call them resolutions. I like to think of them as self-reminders about what's important for the larger picture.

Sometimes, the day-in/day-out drudgery of managing type 1 diabetes (or any disease) can wear you down. This year I'm taking inspiration from American songwriter Woody Guthrie. In 1942, he wrote his resolutions down in his personal diary. Resolution 19 was "Keep hoping machine running." Resolution 33 was "Wake up and fight." What was true in 1942 is still true today.

We all get worn down. It's essential that we remind ourselves to keep our spirits up and to never give up.

Make sure to read Woody's whole list of resolutions by clicking on the picture below. It's absolutely beautiful:

Woody Guthrie's New Year's resolutions- 1942

How was your day?

2012-11-07T14:31:00.004-05:00

My wife Marinda made a very insightful observation yesterday. Diabetes makes us talk differently to our daughter with T1D. And it's not fair.

When Cassie comes home from school, from a sleep over, or to the breakfast table, the default question that immediately pops out of our mouths is, "how's your blood sugar?"

REALLY? How annoying must that be? Parental worry pushes aside normal conversation.

We've done it for so long that even if we simply ask, "how was your day?" it seems like we're asking about glucose control. I imagine that an unspoken, parenthetical question hangs over the innocent question - "How was your day (with diabetes)?"

So we've made a conscious effort to not make a diabetes question the expected greeting from mom and dad. I've tried, "did anybody get into trouble at school today?" or "did anyone make you mad today?"

What do you ask your T1 child?

Superhero

2012-10-19T00:44:00.001-04:00

It happened again. That feeling of hopelessness and dread. Cassie had been running high fevers. Her hacking cough progressed to pneumonia. She started showing large ketones and her blood sugars went through the roof. Two nights ago I was faced with a reading on her glucometer that simply displayed two symbols: H-I. That meant her blood sugar was dangerously high; her meter could not register a measurable result. It was HI at midnight, 1 am, 2 am and 3 am. It finally got down to 400 (normal is 100) near dawn.

I'm completely spent.

But then... something odd happened.

I got a sweet kiss on my cheek for no apparent reason after a little daddy daughter dinner tonight. A hug and a giggle passed between us. Then I swear I feel a cape drape around my shoulders and a big red "S" appear on my chest. I grow ten feet taller and sprout wings. Suddenly, I'm ready for much more.

Walk Team Kick Off!

2012-10-14T08:21:00.000-04:00

One way we fight this crazy disease is by taking part in JDRF's annual Walk to Cure Diabetes. Our local walk is going to take place on Saturday, October 27th. It's getting close to sneaker time.

Cassie wrote an amazing letter that makes it hard not to be a philanthropist for our cause: check out what she had to say on our fundraising web page: http://www.cassiemaxwell.com

Please consider joining us if you're going to be in Winston-Salem!

Diabetic Empathy in Kids

2012-09-17T08:35:00.001-04:00

I had to rush my wife Marinda to the emergency room last Wednesday. She was stricken with severe abdominal pain and had to quickly be admitted into the hospital.

Her suffering was so bad that she needed to get dosed with powerful painkillers like morphine and dilaudid. It's a little hard to tell if your blood sugars are high or low when you're writhing in pain and drugged up. That's why I never left her side. During her hospital stay, the medical staff took care of everything else except her Type-1 diabetes, because we learned that nobody can manage our diabetes better than one of our own family members. We learned that lesson the hard way, when we rushed our then toddler, Cassie to the ER for diabetic ketoacidosis many moons ago.

Once Marinda was discharged over the weekend, I needed to leave her a few times just to run errands or unwind. Cassie hung around to take care of her mommy's diabetes and to play nurse maid. It was a role reversal. Patient became caregiver. Child became in charge of parent. And she did a fantastic job.

Cassie knows what it's like to feel bad. Sharing the same disease as her mom, she knows what a burden diabetes can be. Her experience with juvenile diabetes has trained her to be able to place herself in the shoes of someone else who is hurting. It's amazing to see how sympathetically she reacts to any kid she meets who is faced with a disability or setback. She's compelled to take their side.

Diabetes has many side effects. It's a blessing that empathy is one of them.

Silver Lining

2012-09-04T11:21:00.001-04:00

Whether you have diabetes or are touched by a loved one with the disease, we all belong to the T1D club. We didn't ask to join. We'd gladly give up our membership and secret decoder ring - without any hesitation.

However, there are benefits to being part of a club. There are others out there who care, understand and support you.

Dick Allen, is the new Chairman of JDRF's International Board of Directors, and I'm proud to call him my friend. In his most recent "Message from the Chairman," he had the following to say about JDRF and our T1D community. I'm glad he's in our clubhouse.

Like all of you, I am a volunteer. I came to JDRF 11-plus years ago when one of my four grandchildren was diagnosed with T1D. And while I didn’t want to join this club any more than any of you did, I have come to realize that there is at least one silver lining that comes as part of it. Of course, I am not even remotely glad that my granddaughter Hannah has T1D—I wish with all my heart that she didn’t. But that said, I must say that I find great satisfaction in the fact that as a direct result of that unfortunate diagnosis, I have met some of the most extraordinary, caring, dedicated, passionate, and generous people I have ever known. And they have enriched my life. So, just as I do not want to let my granddaughter down, I don’t want to let any of you down either.

Thank you Dick for pointing out the silver lining. Over the many years our family has faced Type 1 Diabetes, I am ever thankful for the supportive friends and "club members" we have met along the way. You have enriched my life as well.

Where's the Butter?

2012-07-25T08:18:00.000-04:00

If you blindfolded any family member in the Maxwell House, they could still navigate themselves to the linen closet where we store the glucagon. Even though we've never, ever had to use glucagon in over 15 years for T1 Diabetes*, we are all keenly aware of what it's for and where to find it in an emergency.

The spare linen closet holds boxes of syringes, alcohol swabs, lancets, glucose meter strips, glucagon and old pumps and insertion sets. We also have a kitchen drawer where you can always find a lancet, syringes and a meter. And I don't think the butter compartment in our fridge has never had a stick of Land O Lakes in it. That's where we keep the long-acting Lantus and the fast-acting Novolog insulins. Juiceboxes are in the lowest shelf of the pantry. Always.

It's important to keep the locations of our diabetes supplies consistent. In the middle of a crisis, our "lizard brains" take over. The combination of fear and adrenaline make a potent cocktail that can cloud your brain. If you can find what you need on "brain autopilot" (technically that's the amygdala vs. the prefrontal lobe) you can effectively act like a good daddybetic when the need arises. You just have to find a different place for the butter.

* (knock on wood)

Lab Rats

2012-07-23T08:30:00.000-04:00

Shortly after Marinda was diagnosed with T1D, she sought out researchers who were studying diabetes. She ended up participating in a phase 2 clinical for 3 years. It was a pretty large time commitment and involved a few in-hospital stays. We strongly believe in research, and taking part in a study like this helps us understand how to end diabetes. Marinda thought it was worth it. And it was her choice to make. In all the years that our daughter has had the disease we never put her through this kind of rigmerole.

Until now.

The difference is that Cassie is old enough to make the decision herself and is aware of what is involved. It's her choice, and it's a relatively safe type of study.

So...Cassie and Marinda have just met with a researcher and will undergo a very stringent diet to see its effects on basal insulin needs. Hopefully we all learn something.

Bonus Link: If you're interested in being a T1D Lab Rat: http://www.diabetestrialnet.org/

T1D Don't Care

2012-06-20T09:45:00.000-04:00

T1D has a mind of his own.

Need to be able to focus on work or school? T1D don't care. Expect to see good glucose numbers when you do everything right? T1D laughs. Feel like a healthy summer salad for lunch? No. T1D want sugar, caramel, carbo binge NOW!

T1D has a mind of his own.

A thought for Father's Day, 2012

2012-06-17T15:30:00.000-04:00

These sisters are more alike than different. Dad loves both.

Here's a toast (raising virtual beer glass) to all the dads out there. Especially to the ones who father children who deal with diabetes. Notice I didn't say "kids WITH diabetes." I also want to include the dads who take the extra time and care to nourish the children who have a sibling with the disease. The siblings also deal with diabetes.

Although our older daughter Miller doesn't have to continually prick her finger or inject insulin, she has grown up most of her life with type 1 diabetes ...because her kid sister had to. She learned early on that life was unfair. She had to be patient and wait for what she wanted (or needed) if her little sister Cassie needed a snack or a bolus. Cassie's cries always may have seemed more important to us, even though there were always two kids around. Unfair.

Being a good Daddybetic means making equal time for the kids in your brood who HAVE and DON"T HAVE diabetes. Although you may run out of insulin or test strips from time to time, it's important to show that you never run out of love for any of your kids.

Long Time No See

2012-06-17T15:09:00.003-04:00

It's been several weeks since I've blogged. Although you can still follow me on twitter (@daddybetes), I've neglected this blog because of four things:

1.) It's busy at work and at home
2.) It's busy at JDRF (new brand launch, committee meetings, speeches)
3.) There is no third reason
4.) We're busy managing diabetes

But it doesn't mean that I've given up on the blog. Not at all. It's just a hiatus that happens from time to time as life gets in the way. It certainly doesn't mean that I've tired of the friends and readers that I've met through daddybetes. Not at all.

The Problem with Future Tech

2012-03-13T08:00:00.008-04:00

There's a problem with knowing. I know that Continuous Glucose Monitors (CGM) are getting better and smaller in the coming months. I know that smarter, sleeker pumps are getting ready to hit the market. I know that my medical insurance only allows me to get a new device every few years.

Most importantly, I know that I want to get the best possible diabetes tools for my daughter.

Writing this blog, staying up to date with diabetes news, and meeting with researchers and pharma execs give me lots of insight into future tech. But now I find myself knowing too much.

As the best tech keeps getting better, my wife and I find ourselves paralyzed to make a decision about buying a new pump for Cassie NOW. For example, Tandem's T-Slim has a slick iPhone-like interface that looks superior to anything out currently available in the marketplace. But it's not even in the marketplace yet. And Medtronic keeps getting tighter integration between their latest pumps and CGMs. With so many cool things on the horizon, we get anxiety about committing to the wrong technology.

And if we wait... we don't embrace anything better than what we have today.

Sometimes too much consumer research gets in the way. Maybe the right question to ask is, "If we get this widget today, will Cassie's HbA1c be better tomorrow?"

Doctor's Note

2012-02-23T09:58:00.002-05:00

CC-2012 Photo by The Doctr

The next time you meet with your child's endocrinologist you may want to remember to ask her for a note. Here are three reasons that have recently made it necessary for our teen:

1.) DMV- Having a chronic illness makes you jump through a few extra hoops at the Division of Motor Vehicles. In order to get a driver's license or permit, many states require a doctor's note indicating that the applicant is in good health. Some states have specific forms that you need filled out, and the doctor's signature is required.

2.) TSA- Although it's not mandatory, we've found it helpful to have a doctor's note for the airport security personnel. You should separate out your insulin and diabetes supplies for quick inspection and explanation. More and more Transport Security Administration (TSA) agents are learning what insulin pumps look like, but Amy over at DiabetesMine gives a great overview of what you can do to make traveling with diabetes easier.

3.) SAT- It's hard to concentrate or even see clearly when your blood sugar is overly low or overly high. The stress of taking the Scholastic Aptitude Test (SAT) is just one more factor that can make a teenager with diabetes have crazy blood sugar levels. Fortunately, you can arrange for your child to take an untimed test so that she can check and treat her diabetes. It doesn't mean you get easier questions, but it levels out the playing field. A doctor's note is needed to get this special dispensation though.

Twitter to the Rescue

2012-02-20T08:47:00.027-05:00

I love the Internet. It's been invaluable to me for researching diabetes matters. As we begin the process of shopping for a new insulin pump, I immediately turned to the web. Online, I could easily surf and scan manufacturer's websites and read customer reviews.

Like most people though, I tend to trust the opinion of people I know rather than take the word of a stranger. Social networking lets me lob questions like this to people I know and trust. I've been able to get great feedback from my friends at Juvenation, Facebook and Twitter.

Last week I publicly posted my pump question on Twitter. Almost instantly, I got a gem of an idea from one of my twitter followers, @jenjanofsky.

Here's what she suggested: contact your manufacturer reps. This way you can get a one on one, personalized pitch from someone who has in depth knowledge of what their pump could do.

Thanks Twitterverse!

Risky Teens

2012-02-13T09:27:00.002-05:00

The Beautifully Blossoming McFeeley Sisters

GUEST POST: Meet Pat McFeeley, one of the coolest dads with daddybetes and a dear friend. His twins are both Cassie's age and they have all grown up together being able to share their diabetes travails. Now as teenagers, our daughters are hitting us with ever changing challenges. Pat was kind enough to share a little insight that we may find useful.

I am the father of three amazing teenage daughters, including twin 15 year olds who have generally done a wonderful job of managing their Type I Diabetes. Recently, I have been baffled by their “distractability”, the likelihood of not following through on what I would think would be automatic activities like testing blood sugars and delivering insulin (not a word but hopefully you get the point). For a T1D the teenage years can be the most challenging, often times HbA1C numbers become inflated to lifetime highs. With all of the hormone changes that are taking place and growth spurts, the body can struggle to deal with blood sugars, not to mention the distractions of being a 15 year old year old young lady. Lets face it sometimes Facebooking , Tweeting or texting a friend, about the hot boy in their class, takes priority over taking insulin for a meal or a high blood sugar.

The general thought is that teenagers don’t appreciate the consequences of risky choices they make. A good friend from JDRF, Tom Brobson, recently recommended an article that sheds some light on the teenage brain in regards to risk vs. reward.

Apparently, the teen brain does comprehend the consequences but values the reward much more than the adult mind. As a teenage T1D, that might mean continuing that important conversation or activity with a friend rather than checking your blood sugar or delivering important insulin. It could also mean driving a car unaware of a low blood sugar.

The article is in the Oct. 2011 issue of National Geographic Magazine. It is worth a read for any parent trying to figure out the teenage brain and how they make decisions. It also discusses some interesting facts about the development of the brain during those years.

Here's the link: http://ngm.nationalgeographic.com/print/2011/10/teenage-brains/dobbs-text

Crowdsourcing Cures

2012-02-08T14:36:00.001-05:00

I have a lot of faith in the diabetes community to be able to drive cures and better therapies. In fact I wrote a guest piece for fellow blogger Amy Tenderich at Diabetesmine about crowdsourcing a cure.

Smart pharmas like Sanofi are embracing this concept. Although the company does good business making drugs like Apidra and Lantus today, they realize that the diabetes community can be a great source of input and ideas for the next generation of diabetes treatments and tools for tomorrow.

Sanofi is now running an innovation challenge to healthcare providers, patients, IT professionals, students and organizations interested in combining data and design to create a human-centered and data-inspired innovation around diabetes. They've put their money where their mouth is, and are putting up a $100,000 grand prize to some undiscovered innovator(s) who can help people with diabetes (and those of us who love and care for them).

But the first step is to hear from US, the online diabetes community, to determine what type of innovation is most important for patients. Sanofi understands the power of listening to the people who use their pharmaceuticals. Now's your chance to tell them what you need.

Here's the link to the diabetes innovation challenge (http://www.datadesigndiabetes.com/) . Hurry! You only have until this Sunday to be heard.

Valentines Jewelry for my Diabetes Girls

2012-02-08T08:29:00.004-05:00

You can take the road most traveled this Valentine's Day and simply get your sweetheart chocolate or flowers. Flowers trump chocolate as a gift for people with diabetes. After all, who wants to wait until a low blood sugar to have a truffle? But what trumps them both is sparkly, sparkly jewelry.

As a Daddybetes daddy, I love to spoil my girls. This year I offered Marinda and Cassie their choice of any of the chic bracelets at Lauren's Hope for Valentine's. The catch? Lauren makes medical ID bracelets.

Both my wife and daughter stubbornly (foolishly?) refuse to wear a diabetes identifier. This makes it pretty problematic since they are both currently on a shot/syringe regimen rather than a pump. It's hard to tell that you have diabetes just by looking at you. So I'm hoping they pick out something nice from Lauren's jewelry line. This jewelry could help save their lives. I can't think of a better way to let them know how much I love them.

Disclosure: I'm not paid to write about any of the things I've endorsed on this blog. Also, you may want to know that Lauren's Hope donates a portion of their profits to JDRF (where I serve as a Board member- though I don't get paid for that either).

Hate is a Side Effect

2012-02-06T15:56:00.009-05:00

On juvenation Abigail told the world that she's sick of diabetes. Her exact words were:

I HATE DIABETES!!! im tierd(sp) of my shots and i freak out when i see that shot and every time i have to get the shot i say i hate my life !

Abigail is seven years old. She was diagnosed last November.

After dealing with T1D for over 15 years (since Cassie's diagnosis), I can honestly say that I am sick of diabetes too. I Hate it with a capital H.

Unfortunately, hating it doesn't make it go away. Denying you have it just leads to bad glucose control and potential health complications down the road.

It's useless to want to be just like everyone else. Chuck Eichten who has had diabetes for over 30 years may have described this feeling the best. In his new book, The Book of Better: Life with Diabetes Can't Be Perfect. Make It Better, Chuck likened having diabetes to being freakishly good looking. Even on a day when you don't feel so attractive, or don't want any attention, people still stop and stare in awe at your gorgeous-ness. You just can't get away from people wanting to be near you, and they can't help but point and scream OMIGOD about your extraordinary good looks. It's your burden. You've got to accept it and face it. Wanting it gone or hating it doesn't do anything productive.

Although it's already February, when diabetes is concerned, it's never too late to work on those New Year's Resolutions. You can either resolve to let Hate lead to denial, or you can resolve to have Hate push you to not let diabetes win.

Diagnosis Deja Vu

2012-02-03T14:53:00.000-05:00

Last Saturday, I delivered a research update at a JDRF Family Retreat in Greensboro. The event has grown exponentially and the executive director of our local JDRF chapter told me that we had over 800(!) people attend. The sprawling Grandover Resort was abuzz with families who were learning from healthcare professionals, attending lectures and connecting with others "T1 families." Parents had binders full of info and product brochures under their arms. Children were chasing each other throughout the halls - laughing in glee - some meeting other T1D kids for the very first time. What made it so special was that siblings and family members without the disease were just as much a part of the action as those with diabetes. Moms and Daddybetics like me could all bond and commiserate together.

The audience for my speech was made of newly diagnosed families. The expansive ballroom was packed with moms, dads, grandparents and kids who wanted to hear what kind of science JDRF has been finding to get us closer to a cure and better therapeutics (like the artificial pancreas). They were hungry for news. They were hungry for hope.

As I met with a few of the attendees after my speech, I could see a reflection of myself in them. It brought me sharply back to a point in time near Cassie's diagnosis - a time where I was simultaneously overwhelmed with information yet eager for more data.

I could almost literally feel their emotions course through their hands into mine as I took their hands. These raw emotions of fear, confusion and sadness rushed through me. It was a vivid, deja vu-like experience that left me physically spent for the rest of the weekend. Seeing where they were - only a few months into a life changing diagnosis - took me back to the same dark, dark place where I had once been. The experience rekindled my resolve to keep pushing for a cure even more.

Sweet 16

2011-12-21T13:35:00.004-05:00

Early yesterday morning, after blowing out 16 candles on her birthday cake the night before, Cassie went through one of the most harrowing, stress-filled teen experiences- the dreaded road test at the DMV.

Three point turns and turn signals aren't my largest concerns. She's a very competent and safe driver. The daddybetic in me was more concerned about her driving with passable blood sugars. Hypoglycemia at 55 miles per hour is not a worry for parents of "normal" teens. If we could figure out how to hook up a blood glucose meter to the ignition, I would do it in a heartbeat. But her mom and I will just need to trust that she'll do the right thing every time she gets behind the wheel.

Driving off, Cassie beamed. Gauging her wide, wide smile I could relate to the emotions she had. I distinctly remember the feeling of driving unaccompanied for the first time at 16. It was a sense of liberation and elation I had never experienced before. I felt free. I felt light. The world seemed open to entirely new possibilities. It's probably the same feeling we would all have the day diabetes is cured. I hope Cassie gets this sweet feeling again soon.