Tuesday, July 22, 2014

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.


Thursday, July 17, 2014

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!


  

Thursday, July 10, 2014

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.


Monday, July 7, 2014

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!

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!