Better Is Better

Inspired by a vlog over on Six Until Me last week, I'll add my voice to the conversation about cycling out of diabetes burnout.

As you all know, we recently visited the endocrinologist and learned that my daughter's A1C had gone up a bit, though not as horribly much as I'd anticipated.  We have been fighting random 300's for a few weeks now.  Her insulin needs seem to be creeping up across the board.  It's a confusing scene.

With so many issues to tackle at once, it's hard to know where to begin.  It's tempting to throw our hands up in the air and give up.  More effective, though, is to pick a bit of the problem and try to solve it.  I picked nights, because I still believe what the first diabetes educator we met told me: "If you can wake up at a decent number, the rest comes easier."

Nights aren't fun to tackle, of course.  There's the concurrent loss of sleep which comes with more frequent blood sugar checks.  There's also the fear of increasing insulin doses too quickly and inducing an overnight low.  In small stages, though, we're getting there.

Her 2 a.m. numbers are more consistently in range than they were a week ago, as are mornings.  The rest of the day is still out of kilter.  But having a handle on two day parts is better than having a handle on none.  And better is better. 

School Walk

I spent two days this week taping paper JDRF sneakers to the walls of my daughter's school.  To begin with, my instructions were to post them all over the gym where the walk was held, and then to make my way up the staircase to the main office.  "We'll see how far we get from there," said the gym teacher who was in charge of the program.

Five hundred (500!) paper sneakers later, we managed to plaster the entire elementary school. 

Anyone who lives with a diabetes has moments of feeling alone.  We have times where we're convinced there is no end in sight.  There are days of fear, anxiety, and hopelessness.

Today, I watched my daughter walk around the gym plastered with those sneakers. She stopped to admire the JDRF her friends had spelled in balloons before she arrived.  Despite the occasional waitwhat moment, I happily spent two days listening to the children in her school correctly answer questions about Type 1 diabetes.  My favorite was a kindergartener who, when asked why she was walking, explained it was to "make the diabetes go away from the kids who have it."

An amazing amount of money was raised for JDRF to fund research for a cure.  It's a great organization and I'm glad those funds will be put to work.

Today, though, I am happier about the 500 paper sneakers.  They serve as proof that somebody cares.  My daughter will pass them on the way to and from the nurse's office, and everywhere else throughout her day.  She will see familiar names on some, of our friends and family who donated, and of her classmates and their families.  She'll even see names of people she's never met, but who still care about an end to her diabetes journey.  She'll be reminded that she's not walking on her diabetes journey alone; there are at least 500 footsteps beside her all the way.


The conversation at today's JDRF school walk made me want to do a rapid cartoon-style shake of my head and blurt out my daughter's friends' favorite puzzled expression, "waitwhat???"

The message started clearly, with a review of what JDRF's acronym stands for, and what the organization does.  The kids had been prepared by a visit from a JDRF staff person a couple of weeks ago. They seemed familiar with the organization, and that the money raised was going to "help scientists cure diabetes."

Then the question arose as to why they were walking to raise money for this cause, as opposed to, say,  having a read-a-thon.  The kids knew the answer to this too, "because exercise helps prevent diabetes."


"Yes," the gym teacher would clarify, "a healthy lifestyle can prevent getting Type 2 diabetes when you get older."

Primarily, this program, in light of its being run by the Juvenile Diabetes Research Foundation, is designed to raise awareness of, and funding for the cure of Type 1 Diabetes.  It teaches kids what Type 1 Diabetes is, and that its causes are completely different from those of Type 2.  It's designed to raise money to cure and treat Type 1 Diabetes, mostly through treatments completely different from those which would help those with Type 2.  It's designed to create sympathy and support for kids with Type 1 Diabetes from their fellow students.  Yet, for some reason, JDRF has chosen to throw a bit of Type 2 prevention into the program.

If there's a smart adult running the program, as there certainly is at our school, then the differentiation can be made clearer.  Unfortunately, I can guarantee that's not the case at every school holding a walk.  Therefore, there's plenty of room for the perennial Type 1/Type 2 confusion to surface.  At worst, kids will be left with the assumption that their classmate's Type 1 diabetes was caused by lack of exercise.  At best, they'll be left shaking their heads, saying, "waitwhat???"

The Other Good Thing About Paula

The Paula Deen media frenzy has had its horrific moments this week.  Particularly, I imagine, if you're Ms. Deen.  Or if you're an average American living with Type 2 Diabetes.  The "why doesn't she just make a big salad, go for a run, and cure herself already" rhetoric is simplistic and is increasingly hard to listen to. 

On the other hand, there have been some media plusses this week.

The Today show segment was extremely clear.  Al Roker said "Type Two" before every mention of diabetes.  They doctor they had on explained clearly and succinctly all of the potential causes of "Type Two" diabetes.  The subsequent AP article was also very careful about the Type 2 designation.  Several news radio conversations I've heard have included interviews with diabetes professionals in which Type 1 and Type 2 diabetes were differentiated.  In my media consumption, I did not run across any instance where "Type 2" did not qualify Ms. Deen's diagnosis.

This is a huge step in the right direction. The diabetes community has been fighting for years for consistent differentiation of these two diseases.  Awareness, advocacy, and funding are helped for both diseases when there is clarity about what they are and how they are different.  Selfishly, I also know that a clear differentiation means those Type 2 stereotypes are less likely to be thrown at or to stick to my daughter and others with Type 1.

Two posts and a batch of buttermilk biscuits later, I promise I'm finished with Paula Deen. 

Invisible Illness

Invisible Illness Week was last fall, and apparently Paula Deen was participating. 

The opinions and criticisms are flying after Ms. Deen's revelation on Tuesday's Today Show that she was diagnosed with Type 2 Diabetes three years ago.

Many questions are being asked, but the intriguing one for me is, "why now?"  Is it, as the cynics suggest, that she was waiting for a corporate sponsor of her revelation?  Perhaps, but I can see other motivations.

She stated on the Today show that she waited because she "wanted to bring something to the table."  Her straight face did not reveal whether the pun was inteneded.  I can certainly understand the sentiment.

When we reveal to anyone that my daughter has diabetes, the barrage of questions begins.  How long has she had it?  Does she check her blood sugar?  How often?  Does she take shots?  How does the pump work?  Can she eat sugar? 

Or, the barrage of assumptions begins.  That must be so difficult for you.  I can't believe she can't eat sugar.  By now, it must all be second nature to you.  There will be a cure soon.

Watching the response to Paula Deen's announcement, the obvious question to me was why she decided to disclose her diagnosis at all. 

The onslaught of diabetes stereotypes has been brutal.  Whether she brought this disease upon herself, I don't know.  Whether she should continue to cook and teach people to cook the type of food she's famous for is not up to me.  What I do know is that from this point forward, her illness will never be invisible again.  She will be answering questions and responding to assumptions for the forseeable future. 

No matter her motivations, how she developed the disease or how she moves forward in caring for it,  it's hard to disagree that making her invisible illness internationally visible was a brave thing for Paula Deen to do. I can see why she'd wait until she was mentally and emotionally prepared to do it.

Keeping At It

We visited the endocrinologist yesterday. 

In general, it was a good visit.  The downloaded blood sugar charts showed no glaring problems.  Her A1C was not in the orange zone, and up .4 from last time, but still acceptable.  She grew a bit. We're doing a "good job" at keeping on top of the diabetes stuff.

Just for fun, I checked the meter average the day before her appointment and tried to guess what the A1C would be.  My guess was higher than the actual result, which was a bit of a relief.  I knew her numbers were creeping up a bit.  Numbers that start with threes have appeared here and there. The phone calls from school are escalating again.

My hope was that, with the numbers laid in front of us, yesterday's appointment would give us an instantaneous solution.  "Aha!" we'd exclaim, "If we just tweak this basal rate, and that bolus ratio, she'll be fixed."

Alas, that is not what happened.  There were no real trends to be found.  Some outliers here and there.  Maybe a need to take a closer look at mid-afternoons.  But really, those bold print high numbers were fairly evenly scattered all over the page. 

"Keep at it," the doctor said.  "You know what to do." 

Indeed, I do know what to do.  I need to be sure we write everything down, and then spend time at least weekly poring over the blood sugar charts. Taking that information, I then need to make changes to basal rates, bolus ratios, and correction factors. When changes are made I need to make sure my daughter checks her blood sugar more frequently than usual. I should also set up a couple of basal tests, risking the wrath of a hungry child.  This hard work is ongoing, but the level of energy we give to it ebbs and flows.  It's time once again to get in there and crunch some numbers.

How I wish it were simpler.

What's Your Number?

I imagine this chart looks very familiar to many of you:

It's been on the desks and walls of every endocrinology office we've ever been to.  In some it was so prevalent, it was close to being a very strange form of wallpaper.  It's no exaggeration to say that hours of my life have been spent looking at this chart.

The longer I look at it, the more questions and critical thoughts it raises.  If it's supposed to be a thermometer, what's with the giant bulb at the bottom? If it were three dimensional, surely it would tip over. And really, if an A1C was below 4, how would it possibly qualify to be in that big orange area? One would be quite sick, no? Meanwhile, our hopes of hitting any area of the orange zone are pretty much nil. In fact, for small children with Type 1 Diabetes, results below 6 are cause for concern. Can't they make a slightly more encouraging chart for a type 1 diabetes setting with the zones between 6 and 8 being other shades of orange to somehow validate our hard work? 

Our visit to the endocrinologist next week will include consulting this chart to compare my daughter's HbA1C results with the familiar numbers we see on the glucometer. 

Perhaps we should smuggle in an "apricot" colored crayon to validate our results.

Year In Review

The instructions are to pick a first line of a blog entry for each month of 2011.  I've taken the liberty of picking a favorite sentence per month instead, but it's the same idea... a walk through the past year before embarking on the new.

In January, I had no blog, so the sentence will be from my head..."My New Year's Resolution is to start a blog."

February: "Um…well…actually, it’s attached to me. So I don’t think that would work too well, but thank you.”

March:  You've got to love those rare moments when diabetes actually works in your favor!

April: In the long run an educated guess is better than a wild one, and both may be better than denying someone the joy of chocolate rabbit ears.

May: Sometimes it takes me a while to get the sour taste out of my mouth when diabetes throws me for a loop, but if I’m able to make lemonade for my daughter, it’s well worth the effort. 

June: If I’d thought about the note I’d have to send with her and the other preparations involved, I might have decided it was easier to spend the day in an open field in 95 degree heat.

July: Sadly, there’s no way to make the process painless or even remotely pleasant.

August: When I stop to think logically about the 250 test strips I've packed for a 14 day trip, I have a hard time envisioning a situation in which we'd consistently need 17 test strips every day for 2 weeks. 

September: This diabetes thing is a really big deal. Please don't make a really big deal about it.

October: That she recognized these as somewhat bizarre thoughts and took the next step to grab her glucometer is diabetes management gold.

November: "One word I would give to you and your family is HOPE."

December: I remember cookies being foremost on my mind as the childrens' hospital staff confirmed the diagnosis of diabetes on that December day.

Happy New Year, and thanks for reading!