Defusing the bomb.

 Last month, L’s Diabetic Life was in turmoil.  It seemed like an angry tiger materialized out of thin air atop his blood sugar monitor.  The numbers were stubborn, scary and impossible to tame.

Breakfast was by far the worst.  It was like the dawn phenomenon on steroids. 

He’d eat breakfast, spike to the moon, and then dive.  Dive to the depths of the deepest ocean…all in the span of say, two hours.

To be clear, I’m no novice when it comes to dawn phenomenon or breakfast spikes.  But there was like an eternal black cloud over every one of my old tricks.  Nothing was working and for the first time in a LONG time, diabetes was actually affecting L’s life.  It all just snuck up on us, quietly enough that I didn't take it too seriously.  I simply started putting out fires as each one flared up. 

But then it all came to a head.

He was off.  As if a marionette, his blood sugars seemed to control his limbs.  Even worse, his brain was muddy, he couldn’t concentrate.

“Mom, my fingers are shaky and my body doesn’t feel right.”

He would wander the classroom completely in his own world.  Trying to figure out what he was feeling.  Was he low?  Was he high?  He didn’t know.  All he knew was something was so way off, it was reason for concern.  He checked his sugar so many times during the day, he was becoming obsessed.  Usually food or insulin would fix the feelings…but in this instance, it seemed there was no quick fix to what was happening.

The Friday a few weeks ago was the last straw.

“Mom, I can’t concentrate because my body keeps telling me something is wrong.  My stomach feels shaky.  Can you pick me up?”

That day his numbers spiked to the high 500’s and then an hour later he was in the 40’s with a million units on board.  I picked him up from school.  That was huge.  I don’t leave work to pick my boys up from school for diabetes unless it’s a big deal.  This was a big deal.

I called the Endo.  Pre-bolusing.  Super-bolusing.  Rage-bolusing.  Nothing was working.  Do I raise the insulin to carb ratio for breakfast?  But he’s spiking and then dropping dangerously low.  How would more insulin fix that?  Does he need more basal prior to breakfast?  There were like a hundred scenarios running through my head.

The Endo suggested a load of changes.  But my swelly brain wondered how I would know which one was fixing the problem if I did them all at once?  Making a decision was never so heart wrenching.  I didn’t see how I would ever be able to fix this for him.  I honestly felt like I was defusing a bomb.  One wrong move and it could all blow up in my face…even worse…blow up in his face.  This was affecting him WAY more than it was affecting me.  I was scared to do the wrong thing…as a mother, I felt more than anything, like a failure.

Ironically, I did end up upping his breakfast insulin…it was soon after I had the epiphany to change his insulin sensitivity too.  It seems since he was waking up so high in the morning, (another issue…3 correction boluses wouldn’t budge him from where he was at night,) it seems the morning correction bolus was too strong and that was what was bottoming him out an hour or two after breakfast.

I upped his nighttime basals a tad and soon he was waking up in range.  Things were better the next two weeks, but not perfect.

And then, like magic…it all ended.

Like honestly, the tiger decided to pack up and park himself somewhere else.

He began going low at night.  I have to do half corrections or things get scary.

He’s not spiking at breakfast anymore, in fact he’s more predictable than ever.

It’s just insane to me that diabetes can come into our lives, throw a tantrum and then go sit in a corner like nothing happened.

It seems the culprit was a growth spurt.  To be fair, it was the most insane growth spurt chaos I’ve ever encountered.  And I’ve encountered a lot.

Last week during spring break, he spent 24 hours in the 300’s and 400’s.  I gave him enough insulin to kill an elephant and he wouldn’t budge from those numbers.  Flashbacks, a bit of PTSD from the month before and I was panicking.  My sister in law kept encouraging me to change his set and I said, “No…he’s getting insulin!  He has no ketones!  He must be growing again!  CALL IN THE GUARDS!  I’M GOING TO BLOW!”

But then I did change his set and…nirvana.  Everything is back to normal.  Well, you know, maybe normal is a pretend word, but like…regular.

Sometimes I got diabetes in my back pocket.  Other times, it has me by the throat.

I’m just glad the fates have smiled upon us, for a while anyway.  I think both L and I need to catch our breath.  Breaths?

Breath.

Breathe, Meri.  Just breathe.

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An Open Letter to Parents of Children with Type 1 Diabetes

Shame.

It is a terrible terrible thing.

Especially when it is for something that we have little control over.

When our children were diagnosed, I know, buried deep inside all of us, there was shame.  Shame that our children would have this word attached to them for the rest of their lives.

“Diabetes.”

But then the doctors explained to us that it was autoimmune.  That it “wasn’t our fault.”  That it “wasn’t their fault.”

So we made it our battle cry.

“It isn’t anyone’s fault!  It is autoimmune!  It isn’t Type 2 Diabetes!”

“Because when you have Type 2 Diabetes…it is your fault.”

Ok.  Maybe we didn’t say that last line.  But we imply it all of the time.

To save face for our children and our families we throw other families under the bus.

I don’t think we realize we are doing it sometimes.  I understand that in almost every case we are simply defending the people that are most precious to us.  We are mother bears, HEAR. US. ROAR…that it isn’t Type 2.

I’m not implying that D parents need to bear the cross of the Type 2 Community.  And I’m certainly not implying the entire culture of shame is our fault, because certainly society as a whole, including the medical community and the media have projectile vomited blame and shame all over the words “Type 2 Diabetes.”

Maybe it’s not our fault, and maybe it’s none of our business.  Yet.  What if someone we love and care for deeply does get Type 2 Diabetes?  What then?

Are you going to shame them and tell them it is entirely their fault?  Are you going to sit back and watch them get brushed aside by the medical system while their bodies are damaged and ruined by this disease?

Shame stops people from talking about things.

Shame stops people from advocating for themselves.

Shame makes people HIDE their condition. 

Shame makes us destroy ourselves, not help ourselves.

Imagine a world where someone could get a diagnosis, and instead of doctors telling them to stop stuffing food in their mouths, they were given specific battle plans, the correct tools to help, and more than anything…empathy.  Empathy and understanding.

Imagine a person telling their friends they have Type 2 Diabetes, and their friends knowing how devastating a diagnosis it is, and instead of blaming, saying, “What can I do to help?  What can I learn?  I’m so sorry, I know how scary this is for you.”

Nearly 10% of the entire US population has diabetes, including over 25% of seniors.  Chances are you know plenty of people with Type 2 Diabetes, and you have no idea, because they are in the closet.  Also, according to the CDC over 36% of Adults in the U.S. are obese.  But yet, only 10% of The U.S. population has Type 2.  There is obviously more to the story.

The fact is, people with Type 2 can do all the right things, and STILL have diabetes.  Losing weight and becoming healthy doesn’t always change things for them.  We are finding out now that there are many other factors that can contribute to Type 2.  Not just weight.  Not even always weight.  I know many very thin people with Type 2. Maybe people can change their lifestyle and are able to use less medication, but they are on medication none the less, and still run the risk of complications.

Bennet wrote THIS completely enlightening article.  In it he points out the astronomical Emergency Room costs due to hypo episodes with people with Type 2.  These staggering numbers show that the Type 2 Population isn’t getting the care and attention they need.  They aren’t educated properly on their meds, instead they're told, “Watch your diet, lose weight, and take this extremely complicated medicine that we are going to pretend isn’t complicated at all.  Now go away.”  And sure, there are millions who go home and don’t take their meds.  Why?  Two possible theories:  They are ashamed, in denial and want to pretend it isn’t happening.  And also because they weren’t told exactly what is going on in their bodies, like what high blood sugars are actually doing to their systems. They aren’t given an entire team like our children are.  Many don’t even get to see an endocrinologist.

But I digress.  If we can’t be sympathetic to the plight of those with Type 2, maybe we can find a way to not throw that population to the lions.  Maybe we can simply state that Type 2 is Metabolic and Type 1 is Autoimmune.  Maybe we can explain that out of all the people with Diabetes out there, those with Type 1 only make up about 5% of that population.  That we are a little different than other types of diabetes.  And go from there.

Because if you think your outlook isn’t going to make a difference, you are wrong.  One person CAN make a difference.

I'm not pointing fingers here.  I was just as guilty in the shaming department years ago.  But then I met people with Type 2.  Brave, amazing people who burst out of the closet and said, "This disease isn't all that it seems.  It is much harder than it looks.  I'm doing my best but my journey is hard."  And now I call these people my friends and I'm learning things I had no idea about.  Shocking things that completely threw my entire diabetes theology for a loop.

People with Type 2 Diabetes are PEOPLE.  They have feelings.  They are wonderful, human people doing the best they can with what they’ve got.

Our children are not better than them.

We can’t make the people with Type 2 the martyr for our children’s disease.

It isn’t right.

Let’s help put out the fires of shame by changing our outlook.

Think of the Type 2 Community as our neighbors.  Let’s tear down the fences instead of fortifying them with barbed wire.

With all sincerity, 

(This post inspired by Sara’s post HERE and Mike’s post HERE.)

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Time

Last week I received a spam comment on a post from a year ago.  The post was entitled, "It hurts."

I clicked over and read the post, feeling the entire time as though I was reading a strangers blog.  "This poor woman.  This poor poor woman."  That's all I could think.

It is exactly a year later and time has lived up to its promise to heal.

I'm healing.

I still have a ways to go.  It still hurts.  I still have plenty of raw spots.

But I am healing.

I have good weeks and bad days, that's par for the course.  But I feel stronger.  My personality has returned.  I'm goofy, more confident and I'm able to laugh again.  I'm so thankful for that, for the most part because I believe that's what Ryan wants for me.

Yesterday was Ryan's birthday, and as expected I felt the familiar feelings of malaise wash over me.  Before, that feeling would have sent me into a tailspin of lonely depression...but this time was different.  Probably because time has shown me that tomorrow, or soon, I'll feel better.  For lack of a better sentiment, I believe I'm able to embrace my grief now.

It's more of a friend than the enemy it was a year ago.  When it circles around I can sit with it, and visit.  Reminisce.  Embrace the loss and the complicated feelings enveloped within the grief.

When it begins to move further away, I cope by not thinking about it too hard.  Or too much.  Because the fact remains, if I really think about Ryan...if I think about missing him and about his hugs and the love we had, I fall apart.  So I've conditioned myself to smile at his picture, and talk as casually as possible and as much as possible about him to the boys.

Of course, there is a lot of guilt that goes along with that.  But I've had many talks with Ryan and he knows that is the way it has to be.  As much as I want to obsess about his absence, those feelings just aren't compatible with a life that is worth living.

So I adore instead of obsess.

Lean on those memories rather than submersing myself in them.

I don't keep the pain with me anymore, but I do keep it within arms reach.  Just in case I need to feel it all to remind myself of my humanity.

It's all a process, and I try to be as gentle with myself as possible.


Though through all of this, one thing has remained the same: My knowledge that everything is going to be okay.

Somehow I've been able to keep the faith that it will.

And right now,  my faith is the fuel that get's me up off the bed, off the couch, even out of the car.  It lets me dance.  It lets me laugh.  It allows me to live.

I took my life and everything I had for granted for so many years.

Not again.

Not anymore.

I will live my best life...my happiest life.  Because regret is rocky bed to lay in.

And we all know, I need my sleep.

Yes, a year later I am better.  And a year from now I have hope that I'll be even better than today.

Do your work, Father Time.

You do your work, and I'll do mine.

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Stuff I seen on the Internet: Vol. 3

It's been too long!  I have so much exciting information to share!

On your marks.  Get set...

We're starting off with A new discovery in stem cells in Japan.  Check it!

Have you heard of the Asante's "snap pump?"  It recently partnered with Tidepool to bring patients better access to their data.  A win win all around.

Finally!  The FDA has approved the Dexcom G4 for pediatric use.  Children from 2 to 17 now have the green light.  (Can't wait for that approval for Medtronic's Enlite system!)

Billed as a tool for kids, but absolutely useful for adults with T1, Novo Nordisk hit it out of the park with their brand new, redesigned Insulin Pen.   Finally, a record of when someone took a shot, and how much they gave themselves!

The Strip Safely Campaign asks you, "Do you have 2 minutes to help shape the future of accurate diabetes testing?"  If you do, Bennet lays out clearly how you can be instrumental in helping make a difference!

Kerri Sparling's new book "Balancing Diabetes" has now officially hit the shelves!  Word on the street is it's the bomb!  It's burning a hole in my laptop just waiting to be read!  Can't wait!

Do you ever plan on flying with an insulin pump on board?  Melissa gives us information you might not know about bubble issues and pumps while flying.  A must read!

Take this 2 minute quiz and Novo Nordisk will donate money to the Diabetes Hands Foundation and Diabetes Advocates.  How much do you know about diabetes?

The new Medtronic Iports are now available in the US.  For children on shots, this will provide the much needed respite from so many pokes!

Lastly, here is an awesome info graphic Mike Lawson made to show us the power of sharing.  The Spare a Rose initiative was a booming success this year because people like you did something as simple as share.

Tomorrow is FRIDAY!  Start those engines!

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Driver.

My boys are growing up.

I don’t think I ever wished my boys would grow down per se…but maybe they could slow down a little?

I swear we called J, “Baby J” for many years of his life.  And now here he is driving off in the truck, all by himself.  He’s gone from 6 in the morning until 3:30 in the afternoon and I’m supposed to be all nonchalant about the whole thing.

But I feel anything BUT nonchalant. 

Non/cha/lant ADJ:  A person feeling or appearing casually calm and relaxed; not anxiety = not me.

Oh.  And here’s a little thing.  He has Type 1 Diabetes.

I know you know.

Oh, I TOTALLY know you know.

That means a lot of rules.  And guess what?  16 year olds are notorious for skimming the edge of rules.  He does just enough not to get in trouble, but just enough to drive me bananas too.

New rules include checking his blood sugars before he gets behind the wheel.  And if he breaks that rule, or at least if he’s caught breaking it…he can’t drive the next day.

Let’s just say it out loud.  Rules are WAY harder on parents than on the kids.  I said it and I mean it.

I hate handing down punishments.  Punishments or consequences are very last on my “favorite things to do list.”

I haven’t had to hand it out yet…because even though he's been driving for months, he just started driving to school today…so we’re still baby stepping through all of this.  And it's a pretty straightforward drive, even though in my head it looks more like this:

      

What makes it even harder is J, (diagnosed at 8 months old,) feels his highs and lows.  His amazing A1C glows.  He is an anomaly when it comes to teenagers and Type 1.  So testing on a schedule chaps his hide.

But rules are rules.  Safety is safety.  Life is life.

Life.  Yes!  Let’s just keep everyone alive, shall we?

And he has a beard like thing on his face.  I just thought I'd throw that in there for context.

I know that growing up is hard on kids.   But can we just all take a minute of silence for the parents.

…

...

…

Thank you anyway.

Brave face: ON.

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There is no such thing as small change.

I held the insulin vial high above my head where the light from the gym windows could just catch the liquid left within.

“This is insulin.  Your bodies make insulin all day long.  Believe it or not, your body needs insulin to live.  My boys have Type 1 Diabetes.  Their bodies do not make insulin.  Just days without this…and they can’t be alive anymore.”

I gently shake the bottle to make my point.  Their eyes were bright with interest.  I had them.

“Thankfully, we’re able to inject this insulin into their bodies, and they can live a normal life just like you and me.  But there is a catch.  This bottle of insulin is very expensive.  This little vial alone costs about $150.  Our family goes through a bottle of insulin about every five days.  We are very lucky we have good insurance so we can afford to keep our boys alive and healthy.”

I pointed to a map bright on the screen projected by the overhead.

“This is Haiti.  And over here?  This is Africa.  When a child is diagnosed with Type 1 Diabetes in these countries, their family almost always can’t afford the insulin.  Do you understand what that means?”

The children nodded solemnly.

“All they need to live are several drops of this very special liquid.  A lot of times bad things happen and there is nothing we can do about it.  But in this case, that isn’t true.  We all can help!  Even if we can only help one child, wouldn’t our efforts be worth it?”

Children are humble, loving, pure souls.  They have a knack for empathy.  When I asked them if they’d be willing to bring in $1 or more on Valentines Day to help these children live, they cheered.  When I told them their $1 would also buy them a pass to wear their favorite silly or fun hat to school that day too, they were beside themselves with happiness.

Two weeks later I walked around the school collecting envelopes thick with money.  Each teacher had a story. 

“This student’s family has nothing.  They are barely making it and they handed me a $20 bill.  I tried to explain to them that $1 would be enough, but they insisted.”

“That student over there handed me $40.  Her parents said they would match any amount of money she was willing to give of her own.  She gave it all.”

“Hi Mrs. Schuhmacher!  I gave money for in-su-lin!!!  I’m helping a kid in Africa be alive!”

All in all we raised $1000 for the Spare a Rose Campaign on behalf of Life for a Child.

This is the effort it took me:

5 minutes to talk to the students about the campaign.

20 minutes to prepare envelopes with attached class lists to hand out to the teachers.

20 minutes to put together a flier for the students to bring home to their families.

30 minutes to print the fliers and collate them for each class.

1 hour to collect and count the money.

Two hours and 15 minutes of my time, and what benefits did it reap?

16+ years of life for a child.

Please don’t sing my praises.  I didn’t do anything that any of you couldn’t do.

I writing this to show everyone within my reach that with very minimal effort, amazing things can come to pass.  If we all do something little, our little efforts unite into a tidal wave of help.

Look what the children of our Elementary School did!  

Today I dropped off 450 homemade chocolate chip cookies to the boys’ school.  On each class plate, I pinned this note:

Dear Teachers and Students,

Our Valentine's Day caps fundraiser was a fantastic success!  The (school name) community raised $1000 to put towards insulin for children in developing countries.  That is over sixteen and a half years of life for a child!

As with everything in life, your actions will have consequences.  I know we often think of consequences as a bad thing, but sometimes our actions reap good consequences too.  In that spirit, I wanted to say thank you for your kind donations by sending chocolate chip cookies your way.  I hope in the future this experience will fuel your desire to do more good in the world.  Many small acts of kindness can make a huge difference.  Look at the difference we made!

Congratulations on a job well done!

All our love and adoration,

Meri Schuhmaher and Family

I want you to know that I believe what I wrote to these children.  Too often I don't contribute, because I believe my contribution will be too small to be noticed.  Imagine if we all stopped thinking like that.  Imagine everyone, all of us, doing small things everyday to contribute.  I can scarcely imagine what a wonderful world this would be.

It's time to do our part.  "There is no such thing as small change."

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Gentle.

There is someone you’re going to pass today that is having a hard time.  They might not know how to cope with the feelings they are having, and as a result the passing might not be kind.

Be gentle.

There is a person that you work with that’s family member is going through cancer treatments.  You don’t know that.  They are quieter than usual.  You want to tease them for being so quiet.

Be gentle.

There is a mother at the grocery store who is going to bump your cart and mumble an apology under her breath, that may not seem sincere…but her mind is her child.  She is overcome with worry.

Be gentle.

There is a person who is going to spout uneducated things about your condition.  You’re going to want to yell and use bad words. You’re going to want to strangle them.  But the truth is, no one has ever told them the truth.

Be gentle.

There is a driver on the road who is going to cut you off, and another one that is going to flip you off.  They are late for work.  If they are late again, they might be fired.  They can hardly pay their bills as it is.

Be gentle.

There is a person on Facebook who is going to say something you disagree with.  They are going to say it in a way that is going to feel personal. 

Be gentle.

There is a family member that is going to bug you today.  They are going to say all the wrong things.  They are going to try to burn bridges.  They are scared too.

Be gentle.

There is a blogger who has lost her husband.  She is angry that she is vulnerable.  She doesn’t know how to feel and wants to hide.  But she can’t.  She must walk around like everything is fine.

When you see her, be gentle.

Every person is fighting something.  Every person has opposition.  Every person has their own way to deal with things.

Not everyone deals with things the way you would.

Not everyone feels the way you feel.

And everyone, for the most part, wishes they could handle it all better.

When you see someone having a hard time, or acting in a way that is unbecoming…

Remember, we are our worst critics.  Generally, they know they are doing it.  Generally, they aren’t happy about it either.

But if they run into someone who is gentle?  Someone who forgives?  Someone who is kind?

It can change everything.

Today, I’m going to try hard to be more gentle.  

And then tomorrow, I'm going to try again.

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