Tuesday, June 24, 2014

Why I do nighttime checks.

In some circles, it’s a stigma attached to parenting a child with diabetes.  If one admits to doing nighttime checks, one is fear mongering, and working from a state of unreason. 

And in some circumstances I've seen it serve as a dividing line between parents in the online community.  Today I would like to set differences aside and outline why I often find myself doing the nighttime check. 

(Other than the fact that I have three boys with Type 1, which gives me triple the reason to get up.  Obviously.)

ONE:  The A1C.  Nighttime is half of my boys’ lives.  It is much easier to control their blood sugar at night when they are still and not eating, than it is during the day when they eat, run, feel, and generally rule the world.  Is it easy to keep numbers in check at night?  Not necessarily…when they are growing, or when they swam hours before, or after a big dinner at a Chinese buffet, but it is a hell of a lot easier than during the day.  If I can keep them in range during the night, that is half the battle won.  My boys have A1Cs that are way better than they should be.  The reason they are that way is because for half their life, I’m in control.

TWO:  Waking up with a good number changes everything.  It catapults the succession of numbers for the rest of the day.  If they wake up high, it generally takes until lunch to sort things out, and then guess what?  They eat and we start over playing catch-up.  If they wake up low, they EAT, and often under-bolus and everything goes wonky.  That’s on me, I know. But it’s hard to negotiate just what they need and when they need it.  I’m not magic.  In another vein, I’ve had to learn to let go on nights I really need sleep.  Putting my needs above my boys has been a hard pill to swallow, but in some cases, necessary.

THREE:  Unpredictability.  I can count on one hand how many times I have done the nighttime check and have not given insulin or food.   An argument can be made that if blood sugars are always off, and you always have to do nighttime checks…then something is wrong with the basal insulin amounts.  That is a very true statement.  But only applicable when things are routine.  I’ve learned the hard way that our family falls into routine only about 50% of the year.  The other 50% there are extenuating circumstances.  Like Pizza.  Sleep overs.  Field day.  Illness.  (Some colds last for weeks.  They change everything.) Growth spurts.  Getting back from scouts and realizing the boys didn’t bolus for the treat given there…or sometimes, over-bolusing for the treats given there.  Sometimes they spend the evening at grandmas house, and they do their best at carb counting but they don’t know all the extra math I do in my brain to come up with the numbers I do.  Being at a friends and having Nerf Gun fights that put them in a spiral of lows.  A kinked set.  Bad insulin.  Life isn’t static.  Neither are the circumstance contributing to nighttime numbers.

FOUR:  Your diabetes may very.  There have been many many nights when one or two of my boys just don’t need to be checked.  I admit, I’m unique in my circumstance so comparing you and me is like comparing apples to oranges in some respects…but…you can bet your bahookie that if I’m up checking one, I’m going to check them all.  In the past 15 years working with diabetes there have been too many times I’ve been up to check one, courteously checked another, and found a low or a high that was completely out of left field.  

FIVE:  Insulin pumps fail.  This may be the fearmonger in me…but if my boy goes to bed in the 300’s…I need to know he is going down before I lay my head down for the night.  I need to make sure that pump set is working, because we all know what happens when someone doesn’t get insulin for 8 hours.  It isn’t pretty, and yes, it can be dangerous.  It’s not why I check.  But sometimes it is a contributing factor in my decision-making.  I need to know my child is getting insulin before I let things go.

Now here is my disclaimer:  Nighttime checks for me usually entail a check between 11 and midnight.  The 2am check is reserved for special circumstances which, as stated above, do happen frequently.  I gauge each night, and the events leading up to it and decide what is appropriate for my children in that moment.

***What is appropriate for MY CHILDREN in that moment.***

I understand some children don’t need nighttime checks.  I understand some absolutely do.  I also understand that adults with diabetes don't have all the contributing blood sugar factors that children with diabetes do when it comes to the nighttime.  I’ve been able to see a real-life example of Your Diabetes May Vary just by living with my three boys.  I can’t do for one what I do for the other.  J’s diabetes is a completely different animal than B’s diabetes.  B’s is far and away different than L’s.  That is why blanket comments like, “You don’t need to do nighttime checks,” or “You must do nighttime checks or you are a neglectful parent,” hurt my heart.

Isn’t it ok for us all to do what we feel we need to do? 

We each need to take stock of our own psychological impulses and decide if what we are doing is necessary or unhealthy.  After Ryan passed, I had an unhealthy impulse to check the boys multiple times during the night whether they needed it or not.  I was terrified of losing another love in my life.  Those were demons I had to conquer, and for the most part, I’m proud to say I have.

I have bad nights now and then, but I almost always get enough sleep to live a happy, full life.  If nighttime checks are affecting your life in a negative way, than a heart to heart with your endo is needed, absolutely. 

The bottom line is do what is right for you. 

Please don’t construe my words as judging or lecturing in anyway.  I just thought it was time to lay it all out on the table in hopes that I will be afforded an extra measure of understanding, as I try to extend that same understanding to you.  
I have slept through too many alarms to count and yes, my children were alive in the morning.  But that feeling in my throat as lean against a bedroom door jam, waiting for their chests to rise and fall in the morning is a terrible feeling.

I know you know that feeling.

It isn’t catapulted by fear as much as it is love.

We aren’t so different, no matter what our beliefs or circumstances.  We all love our kids.  And that’s all that matters.

Thursday, June 19, 2014

Five years a'blogging.

Five years ago today, I started this blog.  I have a lot of sappy things to say, but I already posted a sappy post today...so I will fall back onto the past and re-post a post (I'm keeping that sentence, I don't care,) that I think sums up exactly why I started this blog in the first place.  To find "same."

From 2010...
There are a few things I want you to know.

I want you to know, when your daughters pump ran out of insulin within the first hour of school last week…I have felt that very same anger and embarrassment that you did.

I want you to know, when your baby wets his bed at night from a high blood sugar…I have felt the same sadness, guilt, and love for my son that you do.

I want you to know, when you forget to bolus your child for dinner, and their bedtime number is 508. I have felt the very same shame and intense regret.

I want you to know, when you take out your daughters set and there is a bleeder, I have felt the same horror and sheer panic that you are experiencing at that same moment.

I want you to know, when your son goes to a friends for a sleep over…I know you have to actively push the worry and anxiety away or you would be camped out in your car outside the house…because I have had to do that too.

I want you to know, when you have had a long night and you see the mountain of bloody test strips and apple juice containers…I have felt that deep sadness you had in your heart. I didn’t want this for my children either.

I want you to know when your child has high blood sugars for DAYS…I know the pure frustration of it all. I know the anger and the helplessness that you are feeling.

I’m tired too.

I want you to know, when there is an extreme low, and your child is sitting with a blank look in front of you, barely able to speak…I have been there. I have felt the confusion, the panic and the deep worry that you have in your heart.

I want you to know that I stand in the doorway to watch my children breath in the morning too.

I want you to know that I worry about my oldest being diagnosed. I know you worry about your children who don't have diabetes too.

I want you to know that I wonder if my children will hate me one day for all I have put them through. And even though they say they don’t blame me…I still worry about it. I know you do too sometimes.

I want you to know; when your child hasn’t been invited to anyone’s house to play…I know it isn’t fair either.

I want you to know, when your child put her set in for the first time on her own, and you thought you would burst from pride…I have felt the exhilaration of that pride too.

I don’t recognize myself in the mirror either.

I want you to know, that even though I have been to too many endo appts to count…I still get a stomach ache days before. I want you to know I am hard on myself too.

I want you to know, when your child calls you from school, and asks to eat a “surprise” birthday cupcake, and you say yes…I have held my breath too, hoping I have guessed the carbs correctly also.

I want you to know I check my sugar whenever I have to pee twice in a two hour period. I wonder if you do that too?

When I see a person in the store with a pump, I want to run up and talk to that person too. Okay…I want to hug them too.

I want you to know, when your alarm goes off in the middle of the night and you want to throw your alarm clock out the window…I have been there. I have SO felt that.

I want you to know that when I hear of another child diagnosed, I feel anger towards this disease. It brings back too many memories, and makes my heart completely break in half for this newly diagnosed family. I know you feel that way too.

Remember when you walked around like a zombie with dry food on your shirt, and no makeup on for two days? I did that too!

I want you to know, when my child expresses any anger towards this disease, I feel guilty…almost like it is my fault. Even though I know there is nothing I could have done to stop all this…I wish I could take it away too.

I want you to know that I feel conflicted about all of this too. I hate diabetes. I am bizarrely thankful for diabetes. I know it has brought good into our life…but at the same time, diabetes can still suck it.

I want you to know that I secretly wish for a cure too. And even though I tell everyone I don’t expect one…I do.

I want you to know…when you think you can’t go one more day. When you think you can’t check one more sugar, or give one more shot, or tell your child “no” one more time…I have been in that place. I have had days just like that.

I want you to know that I cry in the shower too sometimes. I cry to sad songs on the radio and spend too many days with cry headaches too.

I want you to know that when I read that a child has passed away from Type 1…my breath is taken away too. I want to scream too. I hold my children closer too.

Our pharmacy is a nightmare too.

I want you to know, that the mom at your son’s school...the one who judges everyone and makes you feel awful because she will never even try to empathize with you…she goes to my boys’ school too.

When emotions run high, or low…or upside down...I want you to know I have felt all the craziness too.

I want you to know after the third diagnosis I went through a deep depression for 8 months. But now I’m on the other side of that. If you are depressed, you will come out on the other side too.

I want you to know, that I started this blog for me…and now I want you to know I write it now just as much for you.

Because more than anything, I want you to know that you are not alone.

I want you to know, that even though we are very different, and even though we may not have been friends otherwise…I worry for you. I care about you. I will always support you.

I want you to know that I will always be here for you.

When you feel alone and like no one understands? I understand. We understand. The Mothers and Fathers and the PWD of the DOC are here for you.

If you think you are alone on this roller coaster of numbers…look at that obscenely long blog list I have under the button that says "More Sweet Peeps." We are there too…puking, screaming, crying, laughing and holding on for dear life.

We may be so different, but our hearts are the same.

You are a parent of a child with diabetes…and I am too.

Thanks for taking the ride with me!

Love with a side of Polynesian Sauce

In 10 days our family is going to pack up and return to Orlando for the 2014 Children with Diabetes, Friends for Life Conference.  Every year the conference switches between a Disney hotel, and another hotel off campus.  This year we will be returning to the Marriot World Center, the location we attended the conference for the first time two years ago.

The same place we attended the Summer Ryan was diagnosed…in the throes of treatment.  In the depths of uncertainty and fear, and unending hope.

The memories I’ve tried so hard to push down are forcing their way back up my reality.  There is no mental dam strong enough to keep the flow away.

I remember Ryan, sick and swollen.

I remember the trip very nearly did not happen as we received the bad news tumors were growing just a week before.

I remember attending, knowing full well that this was a monumental sacrifice for my husband.  He was in no condition to attend, but he wouldn’t take this away from his family come hell or high water.

I remember he was quietly going through new symptoms, many of which he kept hidden from me as long as he could. 

I remember him taking a picture of my friends and me by the pool and then quickly excusing himself to our room.  He smiled and told me to have fun, but what he didn’t tell me is he lost sight in one of his eyes.

I remember later that night he was writhing in pain.  We almost called an ambulance, but took a car to the emergency room instead.  Diagnosis: New tumors.  The answer: Wicked strong pain meds.

I remember landing in Orlando and one of my boys had a high fever.  Strep flew through each boy during the trip.  None of the boys ate during the entire trip.  Half the time they were in the room, asleep and miserable.

I remember sitting in the Emergency room with Ryan, canceling the Disney portion of the trip.  He needed to be home.

I didn’t know then he would pass away less than two months later.

Thinking about it makes me nauseous.  The trip seems so meaningless in the grand scheme of things.  But in Ryan’s eyes…it was important.

We had always planned to take the boys to Disney World when they were at the right ages.  And here was a trip thrown into our laps, as I won a writing contest sponsored by Lilly Diabetes and Disney.  And our boys?  At the exact ages we hoped to bring them. To Ryan, it was meant to be.  It was the universe paying us back in spades.

There was a lot of good that came from that trip too.  Mostly love.

Mostly good people, supporting us through prayer and service.

Who knew I would need to go to emergent care with my boys and my husband?  Who knew I would need to make multiple trips to the pharmacy?  Who knew everyone would be sick and miserable? Who knew online friends that I barely knew and complete strangers would be at the ready to help?

But between the lines there was something bigger at work.  A last family trip together.  And as Ryan would say, “No matter how bad things get…we’re making memories, and that’s what’s important.”

We made a lot of memories that trip.

Which brings me to today.

Today I took the boys a few miles down the road for a special dinner to Chick Fil A.  As we were driving home, our bellies full, laughing because J’s big toe is just like mine…J stopped for a moment.  His eyes brightened and he said, “Whenever we go to Chick Fil A it brings back good memories of Florida.  The best day of our trip that first year was when we stayed in the room all day and played video games and your friends brought us Chick Fil A.”

That is what he remembers.  Good people bringing us love in a bag with a side of Polynesian sauce.

As we embark on a new journey to that same hotel, I’ll continue to battle the demons and try like heck to keep my chin up.

Because I know Ryan wants us to make new memories.  New blissful, amazing memories.  And I know he’ll be there enjoying every smile…every laugh…

Every moment.

But this time instead, he’ll be whole.  He won’t have pain, only peace.

I hope the boys’ smiles will bring a wide smile to his face, and brighten up his smiling eyes.

And I hope we’ll appreciate the small things…even if it is the sweet tang of Polynesian Sauce with friends.

Tuesday, June 17, 2014

New A1C targets for children with diabetes.

I was privileged to attend the 74th annual ADA Scientific Session in San Francisco this last week.  I have a whirlwind of information to get out to you, so much so, I’m honestly overwhelmed.  I hope I’m up to the task.

As I try to get my mental ducks in a row, I decided I needed to address the biggest duck of all: New ADA guidelines on acceptable A1C targets in children.

It affects us all, and as I’m sure you all do, I have mixed feelings on the subject.

For those who haven’t heard the details, a position statement by the ADA was released yesterday indicating a new A1C target in pediatric patients, specifically for those with Type 1 Diabetes.  Previous goals were less than 8.5% for children under 6 years old, 8% for those between 6 and 12 years old, and 7.5% for those 13 to 18 years old.

A new recommended target of 7.5% has been set for all age ranges now.  Across the board. Which not surprisingly now aligns with targets set internationally.

I heard this one day after I attended a session that indicated that more than 70% of patients don’t reach A1C targets.  And that study was with the old goals.

If we aren’t reaching the old targets, why are we making them more difficult to attain?

I guess the short answer is, because now we know better.

The old guidelines were drafted years ago, before insulin analogs and before insulin pumps and CGM’s.  Also before new studies that indicate children are in fact at higher risk of complications with higher A1C’s.

Back in the day they worried that lower A1C targets would contribute to severe Hypoglycemia.  Back then, and even now…we all know constant lows are dangerous and need to be avoided. Now, with the tools we have…that just isn’t the case anymore.

Along with the lower A1C guidelines, the diabetes community also received a much needed “got your back” from the ADA.  In this press release they also made this statement: "regardless of age, individuals may require 10 or more strips daily to monitor for hypoglycemia, assess insulin needs prior to eating, and determine if their blood glucose levels [are] safe enough for overnight sleeping."

Can I get a Amen?

How many of us have fought with our insurance companies for more test strips?  How often are we lumped in with the Type 2 community, who when not on insulin require significantly less testing than our children?

I can only hope that insurance companies will see this important announcement and understand that people with Type 1 need to test more, and as a result…we’ll have more stellar, healthier A1C’s.

Here is something I learned last week while attending the ADA convention:

Obviously, the ADA has our best interest at heart.  Though keep in mind, every child is different.  If your child doesn’t feel his or her lows, if your child is especially sensitive to insulin, or if your child has a problem with hypos regardless of their A1C…draw your own damn guidelines with your doctor. 

Because anyone can say anything about whatever they want…but you and your doctor know what’s best for your child.


If you remember anything…remember that.

And just keep doing your best.  You can’t do better than that.

Wednesday, June 11, 2014

Diabetes will always be crazy.

It will always be crazy.

Somebody has to say it.

When people are newly diagnosed with Type 1, they are told that honeymoons can be crazy.  Yes, the pancreas kicks in as much insulin as it feels like.  Yes, sometimes it likes to overcompensate for the highs.  Yes, one never knows WHEN it will help and when it won’t. Yes, it is crazy.

But when the honeymoon is over, the crazy doesn’t end…you are only introduced to a new brand of crazy.  Figured out the correct amount of basal insulin to use?  Things going good?  GREAT! 

It’s going to change next week.

Is that first year crazy after the honeymoon is over?  Absolutely crazy.  I’ll be the first to tell you…but the problem is people think once they get passed that first year, things will not be crazy.

They think that there will be more ((shudder)) control.  Like it's an automatic thing that just happens when diabetes has been around for awhile.

It will always be crazy.

If you have a child they will grow all the time.  There will be a month here and there when they will stop growing, and they won’t be sick and you’ll be all, “Hey, we’re over the crazy!”


Because then vacation starts.

Or testing starts.

Or a sport starts.

Or they are fighting with their friends and they are emotional.

Or it’s that time of the month.

Or, I don’t know…it’s Sunday?

There is always crazy being flung like rogue snowballs right at our face.

 And when we are beamed with one, we think…it can’t get crazier than this.

And then it does.

 Diabetes ebbs and flows crazy.  I think that should be made clear from the get go. 

There will be good days.  Good months, even good years.  Heck, J had a good 4 years once.  It happens.

But crazy is par for the course.

And instead of being surprised by it, it has served me well to expect it.

Because then it doesn’t sting so bad.

That melted snowball feels good going down, and in some cases I relish in throwing snowballs back, bringing all the crazy down a notch.

 It’s ok that things are not perfect, because they never ever ever will be.

Doing the work is enough.

Catching the crazy, and dealing with it is enough. 

Take one snowball at a time and do what must be done.  Crush it.  Melt it.  Throw it back. For crying in a bucket, eat the damn things.    

Just do SOMETHING…and it will be enough.

It’s the ignoring that gets us in trouble.

I wish I could make every teen understand. 

Something is better than nothing.

Crazy is ok.  Crazy is normal.  It’s the acting on it that has power.

Push the buttons and it will be enough.

Correct that high and it will be enough.

Correct that low and it will be enough.

Find out what the number is and it will be enough.

Be honest with your Endo and it will be enough.

Hiding from the crazy just puts you smack dab in middle of a blizzard.  If you ignore it, more snowballs come, at higher speed, and being constantly pelted all day long gets exhausting.  

And hurts you.

Diabetes is crazy.  Grab your catcher’s mitt and play some defense, and then turn the tables and start playing offense.

You’ll be surprised how less crazy your life will be…even though you are surrounded by it.