Their Diabetes.

We’ve arrived in new territory.

I started this blog just over five years ago.  Five years ago my oldest was 14 years old.  J was 11.  B was 7.  L was 5.

Today, our lives are not what they were five years ago.  Not even close.

As I look down the dusty road behind us, I see an enormous amount of progress.  We’ve covered a lot of ground…five years ago isn’t even visible in the rear view mirror anymore. It’s more of a memory than a point of reference.

Things were harder for me then.  Diabetes-wise anyway.

Going from doing everything, all the time…to where I am now, blows my mind.

Case and point: This morning I woke up before the boys and checked their blood sugars as they lay asleep in their beds.  I grabbed one of the boy’s pumps to correct and couldn’t remember the last time I had it in my hands.  It had to be at least a few days before. 

Can you grasp the enormity of that?

Five years ago my hands were on those pumps upwards of ten times a day, each.  Easily.  Now, even though it’s like riding a bike, it felt a bit awkward to give him insulin.

It didn’t feel like my pump.  It felt like his pump.

As I sit here and collect my thoughts, and try to collect my emotions too, I realize that it doesn’t feel like my diabetes anymore either.

It feels like theirs.

Sure, I'm aware it was always theirs.  But for a season, I held the stewardship in my hands.  I stripped their burden bare and wore it on my chest.  Piece by piece they've taken that burden back from me.  They are heavy with responsibility now.

All the boys are doing their own set changes.  J has been doing the midnight checks for the past month.  The two youngest confirm carb counts with me, but when I’m at school, they count/SWAG on their own…and they’re doing a pretty amazing job at it.  The scale has tipped.  They are doing more of the work than me.

In fact, they are doing most of it.

It gives me pause to think where this blog will go in the next five years.  It’s been easy to blog about my diabetes…but now that it is theirs, things get a bit more complicated.

I can blog about my mistakes.  I can’t blog about theirs.  That isn’t my story to tell.

I can blog about my feelings about diabetes.  I can’t blog about theirs.  That isn’t my story to tell.

I can blog about my journey, but now that my boys are taking the lead…its time for them to climb their own mountains and tell their own tales.

No, I’m not going to stop blogging.  I have too much to say.

But my authority on teens and tweens with diabetes will be flimsy at best, as authority infers the power to make choices and enforce obedience.  My boys are old enough to make their own choices now, and we all know how easy it is to force teens into obedience…

I won’t go as far as to say I’ll be a spectator…but I’m a supporting player now. 

My job will be to encourage. 

To lift up. 

To rally. 

To enhearten. 

To praise. 

To buoy. 

To console. 

To applaud. 

And to fortify what’s been taught.

The road is bending and the scenery has become uncharted territory, but my boys fearlessly blaze their trails anyway.

Honestly, I’ve never been so proud of them as I am in this moment.

Becoming comfortable with the unknown.

I’ve been marinating in new experiences.  (Meri-nating?) My life is full of the unknown, which in and of itself isn't anything new...but for the first time in a long time, the unknown  has become a thrilling prospect.

I’m not unsure anymore.

I think part of that has to do with finally making decisions, and another part is the fact that the unknown isn’t new anymore.  Each day I’m stepping further into it, gleaning familiarity with the landscape.

It stands to reason that the unknown isn’t unknown when it is more known.

(I’m good writer.)

Humor me?

Take out a pencil/pen/crayon/charcoal briquette…and write your full name...with your left hand.  (Or with your right hand if your dominate hand is the left.)

I’ll wait. 

Try it.

Ok, I know most of you didn’t do it.  I'm super sad about it, but you can keep reading...just imagine that you did.  What did it feel like?  Can you describe what the writing process felt like with your non-dominate hand?

Shaky?

Uncomfortable?

Awkward?

Hard?

Slow?

Painful?

Silly?

Different?

Regressed?

Frustrating?

Forced?

Clumsy?

Now think of yourself when you were faced with a new diagnosis.  Do these words fit?  How about starting a new job?  Maybe you were just divorced?  How about meeting someone important for the first time? A job interview?

All of those words are typical of the unknown.  Thankfully, as time passes, the unknown goes from shaky to stable.  From uncomfortable to comfortable.  From awkward to ease.  From harder to easier.  From slow to a steadier pace.  From painful to enjoyable.  From silly to amusing. From Different to normal. From regressed to progress.  From frustrating to encouraging.  From forced to natural. We don't feel so clumsy after time...in fact we begin to feel sure footed.

The combined components of time and the journey find us relaxing despite our fears and worries.  We look back and see how far we come, and confidence creeps in.  “If I made it so far, certainly I can make it so far more.”

I’m thankful the hardest is behind me.  I’m thankful I can stop looking at my feet, concentrating on every step and begin moving forward with my eyes on the future.

I feel like I’ve written my name with my left hand a million times since I lost Ryan.  It has taken time, but I’ve finally become accustomed to the new way.

Moving forward into the unknown feels natural to me now.  Any anxiety I have is melting away, revealing a core of sureness.  The unknown used to be a bed of nails, and now it seems to be more of a comfy couch.

I’m excited about my future.

Every step into it has reaffirmed that everything will in fact, be ok.

I’ve been saying it’s all going to be ok for so long, it’s been my mantra repeated over and over and over again...

I don’t have to convince myself anymore.  

I don't have to fake it 'till I make it...

I've made it. 

The movement has begun.

My whole mind and soul is still reeling on the heels of MasterLab at FFL.

The MasterLab agenda was filled with informative and motivational speakers, the most compelling being Michael Mangianello.  He was a key disturber of the AIDS movement, and played a pivotal role in putting a face on AIDS and getting policy and moneys allocated for the cause.

At the Children with Diabetes Friends for Life conference you are given a bracelet at registration.  A green bracelet means you have Type 1, a Orange bracelet means you love someone with Type 1.

Michael said so many things that socked me in the chest. Completely paraphrasing: "I walk down the hall and see these little tiny children with Green bracelets.  It makes me angry.  There are too many green bracelets. You are too comfortable with the status quo.  You have the numbers, you have the leaders, you have the means and the social networks....it's time to start a movement."

Which begs the question, is our community passionate enough to start a movement?

Are we angry enough to start a movement?

I'm afraid we might not have it in us.  Yet.

I say that because I know that JDRF, the ADA and others have asked us to do simple things for our cause, and for the most part, we don't do them.

They, on occasion, have asked us to call our congressman.  Did we do that?  Very very few of us do.  One phone call, and most of us can't even make it.

We are asked to write.  We are asked to comment.  Are we?

If we can't do the little things, how can we rise up and do the big?  How can we shut down the White House switch board when we can't even get a handful to make the calls?  What is stopping us?

I think I have a small inkling of what it may be.

During the MasterLab event there was a presentation on the Spare a Rose Campaign.  It highlighted the good the DOC can do when we put our collective forces together.  Spare a Rose raised money for children all around the world in developing countries who don't have access to insulin.  It saved lives.  Literally.

But the comment was made: "What about the children in the US?  Why aren't we helping them."

And another comment, "How can $5 save a child for an entire month?  It just doesn't make sense."

I think sometimes we realize that our helping is only a drop in the bucket, or in our case, a drop in the silo.  We see clearly there is so much that needs to be done...surely my $5, my call, my letter won't make any real difference at all.

Which brings us back to the starfish principle.  The little girl that was throwing starfishes back into the ocean after the tide went out?  A gentleman, after looking down the beach at the thousands and thousands of starfish questioned why she was even bothering when she barely would make a dent...she wasn't really making a difference, right?

"Well, I just made a difference to this one." She said as she threw another starfish back in the ocean.

Small things done collectively can make giant changes in the world.

Until we start believing that nothing will change.

Don't depend on others to tell your story.  Your story is unique and important.  One of my favorite quotes from MasterLab is, "You know how the saying goes, if you've spoken to one diabetic, you've spoken to one diabetic."

Our uniqueness is powerful. We are letting it divide us, when really it should be used to unite us. The fact that everyone's diabetes is different is one of the reasons we need to make a fuss.  The world is making blanket assumptions about Diabetes, and we're letting them.

Your voice is needed in the din.  It could be yours that finally brings our voices to the surface, just like that little Who down in Whoville that made all the difference to his community.

Is there something moving in your chest yet?

Is there fire there?

If yes.  Good.

If no.  Find that match.

Start HERE.

This is our time.

The movement has begun.

Summertime basal changes: In drawings

Summertime means changing basal rates.

Let me get right to the point: This is how I feel about changing basal rates.

 For those of you who aren’t familiar with what a basal rate is, it is the underlying insulin that is delivered via the insulin pump to my boys' bodies 24 hours a day.  It delivers whether they eat or not.  Whether they are high, or low…it’s always there. 

We need insulin to survive because it metabolizes the sugar in our blood stream.  To keep moving my boys need insulin to unlock the energy.  It’s pretty cut and dry if you think about it.

 Each of my three boys has four different basal rates.  At different times of day, they need different amounts of basal insulin. 

 I used to have those rates memorized.

Yeah.  I don’t anymore.

Anyhoo, summertime means a change in activity and schedules, which in turn leads to changes in basal rates.  The problem is, changing one basal rate can have a domino effect and as a result, all the blood sugars can go to hell in a hand basket, fast.

 This summer I’ve had the pleasure of trying to find the perfect new basal rate for all three boys.

Here’s the kicker.  My boys are not the same boy.  Their bodies are different.

 I know.  Not cool.

So I’ve had to dial J’s basal rates WAY down, and I’ve had to dial L’s basal rates WAY up.  B I’ve had to tweak minimally…but I had to tweak nonetheless.

Long story short…I’m losing my hair.

 It’s been a long 6 weeks, but we are almost there.  Vacations required tweaking, but we have been home a couple weeks now, so I am very close to getting the boys to where they need to be.

But here’s a funny story:  They start school in four weeks, and then I get to change them all again. (Spoiler alert: It's really not funny at all.  That's what makes it funny.)

It’s almost like I’m willing my hair to fall out.

Thankfully, seeing numbers on the whiteboard in the hallway that for the most part start with the number 1 warms my heart so.

My reward is predictability, and we all know predictability is pretty hot.

 In light of what I’ve learned lo these past 16 years, I will try not to stew about the impending changes, but rather bask in the light of good numbers while they last.

 Basal changes may take my hair, but I’ll always have my smile!

  

Roadblocks to the Artificial Pancreas

Attending the ADA Scientific Session was much like drinking from a fire hose.  Information is thrown at you at lightening speed, and before your brain has time to decipher the meaning behind one fact, another comes hurling pretentiously, perhaps even unapologetically, towards you. 

With my limited smarticals, I must admit, much of the terminology went over my head.  I’m thankful for the people that sat near me, who were more than willing to decipher the medical lingo into laymen’s terms.

There was a wealth of information on current technology, and a lot of much deserved buzz around the Artificial Pancreas.  Which begged the question: Within the confines of current technology, are we ready for the Artificial Pancreas?

As far as my swelly brain could translate, here are some of the existing roadblocks:

The current CGM’s seem to be accurate enough, more to the point, the Dexcom sensors are accurate enough.  But the problem lies in the fact that Day One of a sensor is significantly less accurate than Day Two.  And Day Two is less accurate than Day Three.  It takes at least three days for the sensor to reach optimal accuracy for the AP device.  That gap is significant considering the life of the infusion set.

The current AP Devices I’ve seen need three sites.  Insulin.  Glucagon. CGM. Real Estate is not just a problem for children; adults struggle to find prime set areas as well.  Thankfully, there are researchers trying to find a way to integrate the sites.  Medtronic just released an all-in-one sensor in Europe for its pump/CGM combo.  Exciting!  But how long can the set feasibly last?  Maybe five days?  Studies show that five days is a possibility for cannula life and insulin absorbability…but then we’re back to the it-takes-three-days-for-the-best-CGM-accuracy problem.  If less than half of the wear time is prime time, what is the bonus in that?  Even so, my understanding is the all-in-one Medtronic set still uses two needles, it’s just simply all done in one action, under one sticker.

There are studies being done on cannulas, to see what the best material is to use so the site can last longer.  The problem is we are sending our bodily fluids up into that cannula just as much as it’s spitting insulin out.  (Interesting side note: studies show that there is no difference between Humalog and Novalog in the role it plays in cannula life.)

But I think one of the biggest questions is: Are the current insulins fast enough to do the job of a working pancreas?  Turns out people without diabetes release insulin into their system BEFORE they even eat.  If I remember right, it was roughly 5 minutes before to a couple minutes after we eat.  It is only a small percentage of the total insulin produced, but this small natural pre-bolus has shown to make a huge difference. (Which is why studies have shown pre-bolusing 15 min before is optimal.)  Can algorithms be adopted to fix this?  It’s possible.  The algorithms used already are completely mind-boggling. Thankfully, faster acting insulins are coming down the pipeline. 

Lastly is glucagon itself.  I spoke with a couple friends at the Friends for Life Conference this week who were part of an AP trial.  Both of them experienced stomach upset from the glucagon, and in a couple cases…it was significant.  Thankfully this information has only helped the developers create more finite dosing to alleviate this issue.  Also, glucagon is only stable for ONE Day.  It needs to be changed out, every day.  That’s a big hurdle, but one that no doubt will be figured out.  I keep thinking we walked on the moon, my iPhone is practically magic…us humans can create a better glucagon.  It's also important to note that some believe glucagon isn't necessary for a successful Artificial Pancreas system, so this entire paragraph may be a moot point.

Whether the technology is optimal or not, the artificial pancreas is coming, and it is quite remarkable.  I don’t know if we’re going to be able to “set it and forget it” for a while, or if anyone is going to be able to afford it, but we all know that small changes allow for larger measures of freedom. 

The Artificial pancreas isn’t going to bring small changes, it’s going to bring big ones.

And that, is exciting for sure.

FFL Joyfulness.

Turns out, happiness makes you young.

Attending the Children with Diabetes Friends for Life Conference in Orlando last week brought heightened emotions, and as a result:

I laughed louder

I hugged harder

I smiled wider

I danced longer

I loved brighter

I held hands tighter

I bonded strongly

I savored the small moments

And appreciated every bite

It's easy to do such things when you're around wonderful people

Leaving behind all the “stuff” at home and simply being able to enjoy each moment is a gift that can’t be quantified.

I was surrounded by a community that has only embraced and supported me on my journey.  They accept my flawed self, and shower me with love unconditionally.

We are a family.  All family has diversity, and different personalities. We are all weird in our own way, but our experiences bind us.  Those experiences bring out our authentic selves…and when that happens?  Life is good.  

#FFL2014 is one for the record books.  My bracelet may be faded, but my resolve to keep embracing this community is not.  

To those that made this week so joyful:  Thank you.

And if you missed out?  There is a smaller FFL Focusing on technology in Anaheim, California in October.  Maybe I'll be there.  We'll let the fates decide that one!