Mess

My house is clean.

In the last week I’ve had a few people make comments…

“How many hours do you clean every day?”

“Where is all your clutter?”

“Man, your house is so clean!”

In full disclosure, my house really isn’t THAT clean.  I keep the front of the house clutter free and looking good, but the bedrooms are a crapshoot, and the bathrooms?  Well.  I have four boys.  Don’t breathe in too deeply.

I was remembering back today when the boys were little. 

My house was always a mess.  Mess doesn’t even give it the credit it deserves.  It was a disaster, all the time.

ALL.  THE.  TIME.

Dishes in the sink from one or two days before.  Piles of laundry overtaking the couches waiting to be put away.  Floors begging to be scrubbed, bathrooms you needed HAZMAT suits to enter. (To be fair, I had four little boys, three growing boys with T1 who peed a lot at night and didn’t always do it whilst wide-awake.)

My life was chaos.  Beautiful chaos.  Feeding the baby was more important than laundry.  Taking a walk was more important than dishes.  Date night trumped a clean house any day of the week. 

Even as close as few years ago, cleaning was never a priority…because there were a thousand more important things in the cue.

My husband being number one.

Sitting on the couch cuddling with Ryan was my number one priority.  On Saturdays we spent our time out with the boys rather than home doing chores.

Oh how I miss that mess.

Oh how I wish my house were a mess again.

Now it seems, I have so much time.  Sometimes I clean up after the boys just to kill the monotony of my day.

I wish I wasn’t bored.  I wish I had Ryan to distract me.

Now the boys aren’t little anymore.  They spend most their time on the computer.  Legos and hotwheels have all been transferred to the garage.  Laundry is their only big culprit, and my sister in law does most of that now.

She spends the night and does dishes and laundry three nights a week.

I love her company.  I need it.  But I yearn for the days of watching scary shows with Ryan.  I can still see him clearly, turning off the TV.  Checking the doors.  Turning off lights, closing blinds and turning off my computer and taking my hand so he could tuck me into bed.

I miss having a husband to obsess over.  I miss leaving the vacuuming behind to have lunch with him.  I miss movies and dinners and walks, and waiting for his texts every morning.

This quiet is maddening.  This clean is not my choice.

I miss my beautiful mess.

I envy your messy houses. 

It means you are LIVING. 

Right now I feel less like I’m living and more like I’m surviving.

And part of surviving is controlling the things I can.  Clutter is one of them.

Don’t get me wrong.  I’m no neat freak.  I’m woefully behind on my own laundry, and I have a box I just throw in every paper that may or may not be important.

The other night my son had a friend over.  They had Nerf gun wars for hours.  I spent my time cleaning up behind them, when minutes later a new spray of Nerf ammo lay in its place.  Part of me loved the mess.  The other part of me couldn’t spend one more minute on the computer or I would pop.  What’s left to do?

I don’t want you to feel sorry for me.  I am blessed.  My boys are fun and sweet, but they are busy with their own priorities.  Haven't you ever noticed with one child missing the entire family dynamic is changed?  I'm down from 6 to 4 in the house in less than 18 months.  Everything has changed.

I know I won’t be working part time forever.  In fact I’m sure that will be ending before I know it, and I'll be so busy going to school I probably won't be able to keep up on it all like I do.  But I believe even busyness won’t change things much.

My sister in law will still help keep things in order.  And I’ll still be looking for distractions from the quiet.  And when my house is messy?  It will just be clutter.  It won’t be meaningful or joyful.  Or maybe it will be...I don't know what tomorrow holds.

Hopefully vacuuming won’t always be on the top of my list of things to do.

Hopefully there lay beautiful distractions in my future.

Will I find that in a new career?  Will I find that in someone new?  I don’t know.

But I hope that I live again.  Even if living means being blissfully happy with what I have now: Me and four amazing boys. Which I know sounds slightly ungrateful…but I promise it is not.  You see, I’m completely blessed.  I can’t complain when I pray at night, as I know how good I have it. 

I really have it good.

It’s just quiet.  Still lonely.  Maybe still a bit melancholy?  Just different than it was.

Cleaner than it was.  Calmer than it was.  Almost like our life has docked and is waiting at the pier for us to begin our next big adventure.  We're swaying back and forth, not really going anywhere.

Embrace your mess. 

You’ll miss it one day.  I promise.

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.)