Messing up

I did it.  I swore I wasn't that mom.

But I did it anyway.


 

Oh yeah, Conan.  Yes I did.

My youngest called me at snack time from school last week and said, "You're not going to like this mom.  I'm 404."

And yes he was right.  I did not like that.  Usually I would say, "Ok.  Just correct it and we'll see where you fall at lunch."

Not that day.  Not last week.

Instead I said, "What happened?  What did you do?"

I know what your face just did.  Reading what I said.  You're face did this...



Told you I said it.

He sat silent for a minute and then said, "I know!  I don't know what happened."

"Did you bolus for breakfa..."

"Yes." he interrupted.

"Ok. Just correct and we'll see if it takes."

When I hung up I knew what I did.

I could feel it broiling my conscience.

I kept shuddering and shaking my head thinking about what I'd done.



It bugged me all day, until I picked him up from school.  When we had a minute alone in the kitchen I  spoke with him about how awful I felt.  I told him I knew that the number wasn't his fault.  I knew that diabetes throws us numbers like that, if it didn't he would have diabetes in the first place.  I told him I felt awful for making it seem like it was his fault, that even if he didn't bolus for breakfast it would have been ok, because things like that happen sometimes.  No one is perfect, right?

And he hugged me and immediately forgave me.  Even though I'm pretty sure it completely rolled off his back when it happened in the first place.

But I'm glad I said something regardless.

Because I made a mistake.  And I owned up to it.

Even those of us with the best of intentions...those of us who know the harm words have...those of us who fully understand, or TRY to fully understand the mental toll of Diabetes...even we can mess up.

And that's ok, I think.

As long as we're honest about our mistakes.  And sincere.

Kids can smell sincerity a mile away, just as well as they can smell insincerity.

I often wish I were the perfect mom who knew all the perfect things to say to make it all better all the time.  I know such a mom probably doesn't exist, so in the mean time...

I'll keep apologizing.

And hope in the process of raising him I don't completely screw him up.

~MERI

Stuff I've seen on the Internet: Vol. 2

I've got to think of a better name for this.  I like to think I'm creative, but alas, It's the best my faculties can produce at the moment.

I thought I'd wait another week before producing this post, but the last two days have produced articles aplenty!

I've used some form of the word produce three times already.  I'm going to shut up now and start linking.

Here's some stuff I saw on the internet this week:

If you or someone you love uses test strips to check their blood sugar, you need to read this.  The Diabetic Online Community, (see also, mostly Bennet Dunlap,) has been lobbying the FDA to produce, (crap, that word again,) higher standards on those producing (CRAP!)  test strips, thus increasing the percentage of must needed accuracy. The FDA have heeded our calls.  This article HERE lays it all out for you.  A great read!

A watch that will track blood glucose levels?  And Apple is spearheading the project?  I'll take three.

Though this sounds pretty good too.  Checking blood glucose levels using saliva.  No more pricks of the finger?  Just for good measure...I'll take three of these too.

This next link is awesome:  Cross Country Skier Kris Freeman, (who just happens to be Type 1,) has made the Olympic Team!  Congrats Kris!

The title of this post, "Is a T1 Vaccine coming soon?" is misleading.  Because it makes you hopeful they are going to say yes, even though you know the answer is no.  But here is the info on it nonetheless.

This is exciting, and may happen in our lifetime.  Novo Nordisk is testing a new, faster  insulin.  Can I get a WOOT WOOT?!  Read up on its progress, HERE.

An implantable device that delivers insulin will be in the beginning stages of testing in 2016.  Although, I know Medtronic has been doing something similar to this in Europe for years.  I've got the pic here, somewhere...

Oh here:

Yeah.  This is happening.  For reals.

Lastly, if you are having a hard day, or a hard week, or a hard whatever...or if you are having a great day and want to make it better...watch this.   It's ok if you don't know what they are saying, just feel it.

You're welcome.

Find some joy in your weekend!  Go on...do it!

I'll take it. All of it.

I cried myself to sleep last night.

I haven’t done that in a long while.

Literally falling away from the world with tears streaming down my face.  Angry that some would judge me because the moment scared me so.

Angry that my children had a disease that would put their lives at risk just completely so out of the blue…

Angry that I was angry.

And yet amidst all of that anger, love.  A love so strong it flooded every inch of my body.  My chest lurching towards my son’s room, fighting off the urge to continue staring at him all night.

The thought of losing a child can make even the calmest of mothers completely insane.  The what-ifs take flight like a sea of bats exiting a cave for the hunt, clouding all my self-assurance in their wake.  The fact that I’ve lost my husband, that I’ve intimately felt the loss of someone so completely precious, makes it all even more raw. 

If you have a raw wound and rake fear over it, it hurts more.  Take your fingernail and gently graze from your wrist to the crook of your arm.  You maybe felt something.  Maybe you didn’t feel anything.  But if there was a large, festering open wound there?  The tears would come.  I promise you.

So if you haven’t experienced what I’ve experienced, you just can’t know the conflict of emotions bouncing off the walls of my story.

And if you think I’m being dramatic?  Well I can't think of a response without using a swear word, so I'll just leave that question there for now.

If you think I’m complaining about being up all night taking care of my child, you would be wrong.  Sleep is completely irrelevant here.  I could care less about sleep.  I can’t remember the last night I was up with a worry such as this.

I don’t need to recount the entire story to you.  All you need to know is most of the time I play with diabetes like an old dog around the house.  I give it the attention it needs, I feed it, I check on it, I take it to the doctor, I do what I need to…but I separate my children from it.  My children certainly aren’t diabetes.  It’s a visitor. 

But on nights like this I feel like this old dog grew fangs and is holding my children hostage.  I want more than anything to rip them away from their captors grasp.

Last night I looked that old dog in the eye and wondered how I’ve gone years thinking it was completely harmless.  Years thinking I was stronger than it.  Years believing my vigilance would trump any of its efforts.

Because the truth here is…THE TRUTH IS…it only takes one time.

And knowing that stings my eyes, my heart, and my soul as I realize tomorrow I’ll have to continue taking care of that dog like he is simply a harmless visitor.  It just goes against all my sensibilities when I’m in the moment.

Even though I will do it.

Even though I know I’ll be lulled back to a sense of security, and I know that tomorrow I will stand on firmer ground than today.

As the tears fell my mind fell back to the previous day.  My son’s hugs.  He must have told me he loved me a dozen times.  Maybe two dozen?  Making dinner side by side with him.  Holding his hand in the car.  Him scratching my back for a couple seconds as he walked by.  His big, sincere smile.  Our secret handshake. 

He is a miracle. 

He is my miracle. 

And I thank the good Lord that these moments are only sometimes.

Because most of the time diabetes is like brushing his teeth.  A job.  Just a whatever thing that he does.  I know what a blessing that is. 

But on nights like this, you’re damn right I’ll cry.  The wounds on my heart will forever be there and I realize that’s on me. 

Though if those wounds have taught me anything, they have taught me that we will survive.  We will get up and keep moving and the world will continue turning and that old dog will still be lying on the rug tomorrow, the next day and the next.

Somehow, everything will be ok.  Somehow, everything will work out in the end. 

My son doesn’t know what happened last night.  He doesn’t know I cried myself to sleep.  And that is how it should be.  Someday he may read this and see the fear that his mother wore on her sleeve one night.  I hope when he does, he’ll have children or a wife of his own, and he’ll understand that this night I waited for his blood sugar to come up is completely insignificant.  What is significant is my love for him.  

He is everything.

I’m doing what every parent does.  Whether it be a fever, an ear ache, night terrors or diabetes…I’m loving him and worrying about him.

That’s my job. 

And let me tell you, I’ll gladly take every facet of this job in exchange for those hugs.

Because he’s worth it.  He’ll always be worth it.  And in a strange, twisted way, these moments make me love him even more.  They make me realize how lucky I am to have him in my life.  I don’t wish these moments on any family, but regardless, appreciating my son, and loving him even more is a blessing.

I’ll take it.  All of it.

Stuff I've Seen on the Internet

I'm committed to change how I do things.  I spend a fair amount of time online everyday soaking in information.  It's not right that I keep that information to myself.  Some of that info I feel is helpful, some of it I shake my head at.  Regardless, it is information nonetheless, and everyone should have the opportunity to have their eyes on it and glean from it what they will.

In that vein, this week I saved some links that popped out at me, and I'd like to share them with you.  I am hopeful I'll be able to make this an ongoing thing...cross your fingers!

Without further ado...Stuff I've seen on the Internet.

* The new Verio Sync Meter is available for retail sale.  It sends the blood sugar results wirelessly to any iPhone, iPad, or iPod.  From what I understand, it uses the same strips as the previous non-syncable meter.  Check it here.

* Next is an awesome, completely interesting guest post penned by Lane Desborough, a product stratigest for Medtronic Diabetes.  I've had the pleasure of meeting Lane a few times, and he is brilliant.  His drive and smarticles are mind-blowing.  Give the article entitled "We Are Not Waiting" a read here.  I believe it is enlightening and inspiring.

* It is time to register for FFL.  If you aren't familiar with it, Friends for Life is a convention that takes place in Florida in July.  Thousands of people touched by Type 1 flock to the convention for information and camaraderie.  You can find info about the conference here, and when you do make sure you check out the Diabetes Scholars Banquet.  It raises money so the foundation can help send families to FFL that are in financial need.  To see the banquet info click here.  To apply for your own scholarship click here.  Also I was thrilled to see the scholars program just received a hefty grant from Lilly.  Check out the news here.

* Diabetes Art Day is coming February 3rd!  It's a day that you, or your child are encouraged to create art with the theme of diabetes.  You can use diabetes supplies or not.  Art comes in many different forms, use your creativity to amplify your voice out to the community.  For adults and children alike this experience will be a fruitful one.   Throw away the thinking that you aren't good at art, that is far from the purpose.  Also, the more people that participate the more this will grow globally, planting awareness wherever we go.  Every submission is precious.  Commit today by filling out the Diabetes Art Day questionnaire.  Lee Ann Thill is an art therapist and wants to show the benefits of this activity.  You can sign up HERE.

* I read about this app HelpAround and have to say it looks wicked awesome.  How many times have you found yourself in a pinch when it comes to Diabetes Supplies?  The Sweet Life breaks down this app. here. See if it's for you!

* This video popped up on my Facebook feed yesterday.  I know how passionate the Helmsley Trust is about making the lives of people with Type 1 Better.  It's a hopeful video about the artificial pancreas.  Take a peek here.

*  Seriously, whoa. If only!  Contact lenses that test blood sugar values every second??  Yes please!  See the synopsis here.

* Lastly, this has nothing to do with Diabetes.  But it made me laugh out loud, so watch at your own risk riiiiiight here!

Have you seen interesting information around the interwebz that you'd like to share?  Link to it in the comments!

Things are moving.

I had questions.  I walked into Medtronic Diabetes Headquarters in Southern California with three pages full of them, and I was sure many would be left unanswered. 

I had flashbacks of the first Medtronic Forum.  I remember hearing excuses there.  I remember finger pointing at the FDA.  I remember hearing that the technology approved now was developed many years before.  I remember thinking the lag time was unconscionable.  Another 5 years here.  Another 5 years there.  We’re working on it…  We’re working on it…  Although I knew they had good intentions, there was a wall there.  Yes they were smart, bright, good people, but nothing seemed to be getting done.

And then this year everything changed.  It’s like the heavens opened and the walls that stood crumbled effortlessly, pounded down by the power of purpose.  Medtronic seemed less clunky.  They were sleeker.  Better.  Stronger.  Faster.  In almost thee years the energy had become electrifying.   You could feel it when we walked in. 

Things are moving.

They apologized up front.  They admitted to the faux pas of the “Artificial Pancreas” terminology used for the new 530G pump and Enlite CGM that just rolled out.  Although the semantics behind the name came from the FDA, Medtronic didn’t do a lot to quash the rumors going around.  They heard our cries.  The new 530G is not an artificial pancreas.  They are painfully aware.  Although later, when they spoke of the closed loop system, the language seemed a little too forward still.  Can it be called a closed loop system when we are required to bolus for the food?  Medtronic thinks so. 

In fact, after a little prodding I asked Katie Szyman, Senior Vice President of Medtronic and Group President of Medtronic Diabetes, when she hoped the true artificial pancreas would be made available.  She was quick to point out that she doesn’t believe there will be a successful closed loop system without the user’s input.  After all, a computer can’t guess what we are going to eat, so bolusing when one eats will always need to be accounted for.  She thinks a system that will regulate blood sugars by ramping up and shutting down insulin will be out in less than 5 years.  At this time she doesn’t believe using glucagon in an artificial pancreas is a viable option.   Sitting at a table with her and five other bloggers, I was blown away at her willingness not only talk about such things, but also have a two way conversation about it all. 

My questions about the launch of the new 530G pump system were also answered right out of the gate.  Why wasn’t it approved for children under 16?  The protocol for trials set by the FDA were so rigorous; putting children through the exercises would be akin to waterboarding.   The adults that volunteered for the study had to run on a treadmill to induce a low blood sugar reaction, and then they had to keep their blood sugar low to see if the new threshold suspend would actually do it’s job properly.  By getting the system approved for adults, the studies for children were allowed to be quite mild in comparison. 

In brighter news, there are children in the U.S. already taking part in a study for the next generation Enlite (pronounced EN-lite,) CGM sensors.  We won’t have to wait five years for this next technology; in fact Medtronic is convinced we’ve turned a corner with the FDA.  Approvals should be moving faster. 

I was also told that they are continually looking for children, (and adults,) to enroll in their studies.  The faster they enroll, the faster technology will become available to all.  To find out if there is a study near you, go to clincaltrials.gov and search for “Medtronic Diabetes.”

Another notable bone of contention was the fact that the new 530G pump only came bundled with the Enlite CGM system.  As far as I know, there is no way to simply order a stand-alone pump from Medtronic anymore.  I’m not sure that is the best move for them moving forward, especially since many insurance companies have trouble approving CGM’s…especially for children.  I know that our healthcare provider Kaiser Permanente had a big conversation with Medtronic because of this snafu.  It seems that something has been worked out, but still.  It’s all or nothing for the most part.

Medtronic made it clear that they are trying to make the entire system’s price comparable to stand alone pumps.  Also, we were told that there are quiet a few programs in place at Medtronic to help financially.  (Programs that are for everyone, in every situation financially, and for those in and out of warranty.) They don’t advertise these programs, so it would be beneficial for you to call in and speak directly with a representative about your circumstances.  Financially, Medtronic assured us they are there to help you.  Also, In exchange for conducting surveys, Medtronic will reduce your cost for the system. 

Watching the presentation regarding the new CGM, it seems Medtronic listened to all our complaints.  The insertion needle itself went from 17.5mm to 10mm in length.  The needle went from a 22 to a 27-gage needle.  They saw that they needed to minimize insertion pain and keep the bleeding at a minimum.  Because of this, there is an improved needle tip; it is much sharper which lends itself to a 63% lower insertion force.  The sensor left in body is 69% less volume, falling from 14mm to 8.5mm in length.  Their goal was for users to heal more quickly after removing their sites.

Also, to reduce anxiety they created a new insertion device that hides the needle completely upon insertion. A bonus is that this sensor wets much faster, in fact it only takes about 15 minutes.  A bonus bonus is that you can do the insertion one handed, which makes it easier to insert the device behind the arm or on the lower back.

When the system is approved for children, the big sell will be the low glucose suspend feature on the pump.  If your child’s blood sugar falls under the parameters you set, and your child does not respond to the low alarms, the pump will turn off for two hours to prevent a severe low blood sugar and reaction.  We’ll be able to resume the delivery at any time, but the awesomeness lies in peace of mind at night.

In other news, they are aware of the problem of Bayer test strips not being covered by certain insurances.  I am told they are actively working on it.

So when will the 530G be available for children under 16?  In a perfect world, under a year.  There is hope it can happen in that time.  But with the landscape as it is, it could take longer.  The FDA is picky on how studies are conducted.  Medtronic has to do it right, or again and again until they get it right. 

The give and take between Medtronic’s top brass and the Diabetes advocate bloggers was refreshing to say the least.  They wanted our input, they welcomed our sass.  It was liberating for me to be able to blurt out, “Maybe you should just make a more accurate CGM,” and not be glared at, but instead applauded. 

They are working on it. 

And it's not just lip service. 

That, my friends…is called progress.

More to come!  I need to take a deep breath and recalibrate.  Those questions I had walking in?  90% of them were answered.  The 10% that weren't, I simply didn't find the right moment to ask.  The winds of change are invigorating to say the least.  

(In full disclosure, Medtronic Diabetes and Bayer Health paid for my plane ticket, my hotel and my food for this Medtronic Advocate Forum.  They did not pay for me to write this post, in fact I was not asked to write about anything.  The opinions here are 100% my own, and also subject to my own note taking skills.)

Mission statement

Information is power.  Sometimes information comes through unlikely avenues.  In my case, the information I present to you is largely anecdotal.  My life story, and the lessons I learn from living such a life I hope to pass on to others, in large part to let you all know you aren’t alone.

Taking that a step further, I believe that empowered parents lead to empowered children and that eventually, those children will grow into empowered adults.  At least I have faith that it can work like that. 

My hope has always been to empower my reader with the simplicity of understanding.  Empower you to know that even though bad things happen to us, we don’t have to lead a bad life.  Empower you to know that even though you and I may do things very differently, that’s ok.  Empower you to know that even in the worst of moments, everything will be ok.  Empower you to know that your efforts are wider reaching than you could ever imagine.  I can only wish that as  you mobilize all this empathy you have towards me, you can find avenues to turn the tables and revert that empathy and understanding back in your own direction, and cut yourself, and your children a little slack.

I hope you see I'm trying to do that here.

As I type this tears are streaming down my face.  I don’t say that to brag about my sensitivity, in fact I’m sure some may see that as a weakness, I say that to let you know that I am sincerely passionate about this community.  Every single corner of this community.  And by community I mean every person, every loved one, every doctor, every company, every human being affected by diabetes.  All diabetes. 

So is love enough?  Is this heart of mine that swells with adoration, understanding and empathy enough to make a difference in the world?  Maybe it could be.  Maybe it has been.  But right now there is a swelling in my chest that says it isn’t enough.  I want to say that my time at the Medtronic Advocate Forum was the antitheses of such swelling, but really it begun several weeks before that as the new year knocked on the door of the old. 

Somewhere inside of me I know I need to take what I’m doing to the next level.  I didn’t know what that looked like a few weeks ago, but I have a much better understanding of what that looks like now.  Am I already there to full enlightenment?  No.  But I’m ready to take that first step, and that step is to help mobilize the people in my community, (you and I,) towards common goals. 

I’ve used the analogy before about the Who’s in Whoville from Horton Hears a Who. Our community is much like that.  One voice can make all the difference to making us be heard.

And we need to be heard.

There are policy makers, pharma companys, news outlets, and simply neighbors in our immediate area that need to hear our collective voices.  I am going to call on you from time to time to add to the collective to push our influence over the edge.  If I promise you it won’t be hard…if I promise you it can take minimal time, like less time than waiting in line for a cup of Starbucks, would you be on board?

I’m asking you to commit to saying yes.  I’m asking you to commit to taking action, even before I ask for help.  To commit to shunning away the voices that say you aren’t needed.  

I’m asking you not turn the other cheek.

I’m asking that of myself too.

In fact, part of my mission this year is to answer the calls for help. 

I know I’m being vague, and I promise I’m not leading up to any big initiative announcement, or surprise anything…I am, really, just asking us to let go of ambivalence, and embrace the calls to action.  We’ll have our first opportunity to do that in a couple weeks when the annual “Spare a Rose” campaign launches.

If I’ve learned anything the last few days, I’ve learned this:  One person can make a huge impact by doing small things.  Please don’t underestimate your power or our communities need for your one voice.

My 2014 Mission Statement:  I will answer to calls for help in furthering worthwhile causes to benefit the global population of those affected by diabetes.  I will examine my strengths and find my unique way to help, whether very big or very small.  I will not hold on to the information I glean from others online, instead I will share that information to empower the parent community, and to educate as well. 

Big things are happening in the diabetes healthcare landscape, regarding access and FDA approval.  Big things are happening around the world with intent to save lives.  Big programs are happening that can unite our diabetes community, and help us emotionally as well as eradicate stigmas associated with diabetes as a whole. Let’s start noticing.  Let’s start helping.

I promise to do my part to seek out these things, and to let you know what those things are.

I'll take my first step by sharing some of the information I learned this last weekend while attending the Medtronic Advocate Summit.  The event was impeccably put together and lent itself to an atmosphere of openness from all sides. 

It’s all coming once my brain can settle on what to start with. 

Ready…  Set…

(PS In full disclosure, Medtronic and Bayer paid for my flight, food and lodging to this forum.  I was not asked to write about it.  My views are 100% my own.)

Off to advocate

I'm on the Airport Express on my way to the San Francisco Terminal en route to the Medtronic/Bayer Advocate Forum in Southern California.

I attended this summit a few years ago.  It seems like a lifetime ago.  I didn't know any of the bloggers that were attending then.  Scratch that.  I never MET any of the bloggers that were attending then.  I knew them.  I read their blogs until my eyes leaked with either exhaustion, empathy, or laughter.  I knew all of their hearts.   But still, I was shy and a bit uncomfortable in my skin.

Fast forward to today...I feel like I'm running into the arms of my family.  These bloggers now feel more like my sisters and brothers more than anything else.  I know their quirky, endearing personalities, I know their sweet hearts...and I love them.

I'll be attending the summit until Saturday, so if you'd like to follow some of my thoughts, or if you want to communicate directly with me, Twitter is your best bet.

I know.  Don't have a heart attack.  I'm actually going to be hanging out on Twitter.  You can find me at @our3Dlife and my posts related to the summit will be hashtagged #MedtronicDAF.  By searching for that hashtag you'll also find all the other bloggers tweets too.

I've gathered a mountain of wishes, complaints and compliments from various different online groups, but if you want to put your two cents in, please let me know what you'd like Medtronic to know.  I'll do my best to relate it!

So before I throw up from car sickness, I'm going to sign off.

Wish me luck!

And to my brothers and sisters...I'm coming!!