Sunday, May 27, 2012

Being molded hurts

I cried at J's 8th grade graduation.


It wasn't the ceremony.  It was the tangible feeling that despite our crazy life...time stands still for nothing.

My boys are growing up right before my eyes, at what seems like lightening speed.

It was a surreal feeling sitting in that gym...like I was experiencing a moment on a time line.  I could feel the rush of life swirling around my head.

Childhood is fleeting.

Life on earth is fleeting.

I understand that life is hard.  By why must this fleeting life be so hard for my boys?

They are still so young.   

What is the value of their sorrow?  What is the value of the pain they endure?

I can only lean on my faith and hope that these things are molding them into something more incredible than they already are.

Imagine clay in the molders hand.  It is squished, pulled, scrunched, and twisted.  Imagine being that clay.  It just isn't easy.

It's difficult to watch the hard things shape them.  It isn't a beautiful thing.  Hard things are never comfortable or easy.

I want so badly to make it all smooth for them.

I want so badly to make it all no big deal.

I want so badly to give them a break from needles.

I want so badly for their daddy to go into remission.

Kids have it so hard these days.  Somehow, it has became cool to be mean.  My kids don't fit into that mold.  They are already having a hard time just being kids...but add a 24/7 disease and a father who they worship...who is looks different, and acts a little different, and can't do what he used to do.

Things have been a bit less predictable around here lately diabetes wise, and cancer wise.

It is killing me.

My heart aches for my family.


Their plates are full.

How can I lift them up and empower them when I am feeling so down and powerless myself?

All I can say is, bring on Summer.  Bring on fun.

We are soooo ready.  In fact Ryan is taking next week off to focus solely on fun.

(And a few doctors appointments that will hopefully bring us some good news.)

I have a feeling that a smidgen of good news is all this family will need to normal forward.

Deep down, I can't shake the feeling that this is the way it was always going to be.  Somewhere deep inside my swelly brain there is the feeling that we are on a road that is...maybe...for lack of a better word, our destiny?

Is it that we are on a timeline...and the future, although unknown to us, is not unknown to God?

Something I need to pray about...but in the meantime, although feeling us being molded into different people hurts, I just can't help but feel that someday...we will be something better...something brighter, than we are today.

That thought helps get me through.  Heaven knows we are full of imperfections.

I can only lean on the hope that this molding process won't leave us broken...

But instead...renewed.

Monday, May 21, 2012

A houseful of heroes


I live in a houseful of heroes.

The images of their valor and their wonderfulness are a clear snapshots in my mind.

It's in everything they do.

It's in everything they say.

It's in their smile, their laughs and their tears.

It's ever present.

How blessed am I to be surrounded by their optimism?

How blessed am I to witness their genuine determination, every day.  Every hour.  Every minute.

They make it seem easy.

Unfortunately, despite my awareness...I often take for granted everything they do.

M- He is a constant support.  Ask him to do anything...he will do it for you.  In a heartbeat.

J- My level headed boy who doesn't allow diabetes to define him.

B- Has never complained about his diabetes once.

L- His sweet heart wants only to give love and happiness to others.

Ryan- Despite cancer, he is working harder than ever.  The doctors are in awe of him.  As am I.

My efforts are so inadequate compared to their theirs.  I feel like I fail them all the time.

But I love them wildly.  No one can love them like I do.

My heart bursts from gratitude that they are part of my life.

I have a houseful of heroes.

Every day I have with them is a win.

Each memory we make is a blessing.

God forbid I waste the time we have together with anger and self pity.

We have too much to be thankful for.

And tonight, more than anything...I am thankful for my five boys.

Five heroes.  Five times blessed.

(On a side note, this is my 400th blog post.  Thank you for taking this ride with me...I know it hasn't been a smooth one, and yet you ride along anyway.  I'm thankful I can purge my deepest emotions here, and then leave them on the page as I go live a "normal" life.  Thank you for putting up with me, lifting me in my hardest times, and supporting our family in our victories.  Next to marrying Ryan, starting Our Diabetic Life has been the best decision of my life.  Here's to the next 400!)

Saturday, May 19, 2012

D Blog Week: What Our Diabetic Life is REALLY about

Today, on day 6 of D Blog Week, we are supposed to post some "snapshots" of Our Diabetic Life. 

I was going to just post this one, entitled: Set Change Night...



Or this one entitled:  One Long Night...



Or even this one entitled:  Our Survival Kit...



but then I realized that these pictures don't really embrace what OUR Diabetic Life is all about.

Our life is about love.  Our life is about support.  Our life is about family.

Our life is about friendship, and being there for each other.

So I'm posting this video of L that wraps up Our Diabetic Life in a nutshell.

This one's for you...

video

For those of you who receive my posts via email, the video won't show up in your inbox.  You'll have to click the link to my blog HERE to see the post.  Thank you!



Friday, May 18, 2012

D Blog Week: Trying to hit a moving target.



I am dedicating this post to people who don’t understand Type 1 Diabetes. Especially for those who figuratively roll their eyes at Type 1 Diabetes and for those who have uttered, “How is it THAT big of a deal?” or have lectured, “At least it’s not cancer!” 

To those who have learned everything about diabetes from Dr. Oz...this one's for you.

For you my dear friends, I am putting you in charge of bolusing my son for lunch today. (Bolusing means giving my son insulin. There is a whole new language that comes with this disease.) Come on…it is ONE time. Fix my son up for lunch. It’s no big deal, right? Give it a whirl!

Here is your scenario: (and I promise this is a VERY typical one.I picked the boy with the easiest ratios too, because I don't want to be mean.)

My son calls you at 12:15pm. He has just eaten his lunch and wants to know how much insulin to give himself.

Some information you will need to know:

His blood sugar number was 130 before he ate lunch at 11:50am.

He ate ½ an apple…most of his pretzels, his yogurt and his entire sandwich. He also ate an Oreo that his friend gave him.

He gets 1 unit of insulin for every 20 grams of carbs he eats.

One unit of insulin brings his blood sugar, (or BG) down 100 points. His blood sugar goal for this time of day is 110.

Ready to calculate?

Correction= .2 units. To bring his sugar down the twenty points needed.

Carb bolus= 10g for the ½ apple, 10g for the mostly eaten 15 carbs of pretzels I packed him, 40g for the sandwich, 15g for the yogurt and 5g for the cookie. That is 80g of carbs. 80g Carbs is 4 units of insulin.

So what would you give him? 4.2 units of insulin?

You would be totally wrong.

You don’t have all the information! Yes, his pre lunch BG was 130. But he had snack 1 hour and 40 minutes before that. He had a banana for snack, which was 30g of carbs. So at 10:15 he got 1.5 units of insulin. Insulin stays in your system for 3 hours, the body absorbing about 1/3 of that insulin every hour. So my boy had approximately 0.7 units still on board.

Better subtract that 0.7 units that is still in his system from the 4.2 units you were planning on giving him.

That means you are now going to give him 3.5 units…

STOP! Don’t do it!

More information needed!

He has PE after lunch today. They are doing relay races. Exercise DROPS his blood sugar like a rock.

Better take away a unit of insulin for good measure! (Why 1 unit? I just know that one unit will do the trick. HOW do I know? I can't file away HOW I know it! My brain will explode! I just know it! Instincts are a big part of taking care of a child with diabetes.)

So now, how much insulin are you going to inject into my little boy?

2.5 units.

Better…but ummm…sorry. There is yet another small bit of information you need to take into account. We have been adjusting this boy’s basal rates. (The underlying insulin that his pump delivers to him in small puffs every few minutes throughout the day.) My son has just ended a growth spurt and has been suddenly, for the last two days, dropping like crazy between 1 oclock and three oclock. Since we wait 5 days to establish a pattern, we need to leave his basals as is…and at this moment, we need to adjust for these potentially scary lows.

Better take off another ½ unit to keep him safe. (Yeah, because I said so!)

Final answer: 2 units of insulin needs to be delivered.

And you were going to give him how much? 4.2???

That is 2.2 units of insulin too much. That amount of insulin would have brought his blood sugar down 220 points. Which with all the running around he was doing…would have put his blood sugar number at a negative number.

Yeah, you can’t be alive with a negative number.

But don’t worry! We get to do this again for his afternoon snack! And again at dinner! And again before bed! And again at 1 in the morning, and again at breakfast tomorrow! LOTS and LOTS of practice!

PLUS! I have two other boys I get to do this for every day!

And the variables are never ending! A meal eaten with high fat changes everything. A meal eaten a couple hours earlier with high fat changes everything! A big test at school changes things! A substitute teacher changes things! A small cold changes EVERYTHING! A growth spurt changes everything! A fieldtrip changes everything! A night of unexplainable highs changes everything…for the entire day! The weather sometimes even changes everything! EVERYTHING CHANGES EVERYTHING!

I joke around about my swelly brain, but it is more real than I care to admit. The constant cog turning of blood sugar variables can put me over the edge. I am the only one that knows my son’s basals are probably too high in the afternoon. I am the only one who knows that one son’s blood sugars aren’t affected by pasta, and my other son’s sugars go through the roof with pasta. I am the only one who knows that J has PE on B Block days, and he needs less insulin for breakfast those days.

Sure! I share this information with my husband when I can. But here’s the kicker…the information changes every day! Every day I am storing new information I am learning about my boys’ blood sugar trends.

I couldn’t even write it all down if I tried.

And hey, I just tried.

There is so much information stored up in the attic of my brain, your cogs would seriously be sent into a disastrous tailspin if you tried to absorb even a fraction of it. And I’m not trying to be mean or anything.

I’m only able to tolerate the swelliness because I have been slowly acquiring these mountains of information every day for the past 12 years. I have attended this school 24 hours a day, 365 days a year. I used to be a student, now I run the place. Sorry…you can’t learn it all in one session.

Worst part is…I don’t know everything there is to know about this disease. Cause, I’m not a pancreas. I am a human being. Unfortunately…

So when you think you are ready to judge even one second of my split second decision about my boys’ health…think again.

Because this disease is impossibly complicated. I spend my life trying to hit a moving target.

And that is all I have to say.

(This concludes day 5 of D Blog Week.  The topic was, "What is the one thing you would tell someone who doesn't have diabetes about living with diabetes."  Obviously, my one thing is diabetes is complicated.  This is actually a repost from a couple years ago.  M is turning 17 today and we are getting ready for a big, well deserved party for him tonight. )

Thursday, May 17, 2012

D Blog Week: It's my list and I can fantasize if I want to


Today's Diabetes Blog Week prompt asks us to come up with a fantasy diabetes device that would make our world better.  I wrote the following list in less than 5 minutes.  Me thinks maybe I think about this stuff more than I think I do..

So in true Letterman style I present to you:

Meri's top 10 list of 
Made up diabetes care devices
 countdown style

10.  Cracked tubing alert sensor.  Within the past month we have fought three intense rounds with cracked tubing.  Cracked tubing that allowed no insulin to be injected...which led to large ketones and miserable kids.  It would be nice to know if the tubing has been compromised for sure.  (cough...understatement...cough.)

9.  Ketones automatically tested with every blood sugar test.  It would be a combined test, using one strip.  (And lest I'm not specific enough, this fantasy includes the strip NOT costing 10 bucks a piece.)

8.  Implanted microscopic microphones.  If I could get these embedded  into my boys ears, I could be their Jiminy Cricket.  "Did you test your sugar?  Did you forget to brush your teeth?  Don't forget to return your library book.  Ummm...did you test your sugar?"  You know you want to do it.

7.  A low fix that can fit into your pocket, and doesn't taste or look like a glucose tab.  Instant, easy, durable.  Is that too much to ask?  Not in my fantasy world, baby!

6.  Automatically texted blood sugar numbers from child's monitor.  I think this exists, but I want one that works on wifi and doesn't cost me an arm and a leg for a subscription.

5.  Noninvasive blood sugar testing.  Where is that dang watch?????  How hard is it to invent a flipping watch that infrared-ly checks blood sugars?!  We can invent snuggies and we can't invent this?  Come on!

4.  A glucagon chamber on the pump...in case of emergency press gluc button.  I think the bionic pancreas has this...but I'd like it on the next generation Medtronic pump.  (That means I want it now.  And by now, I mean yesterday.)

3.  A swelly brain deflator.  Nuff said.

2.  A blood sugar monitor that alarms if a teen hasn't checked in a certain amount of time.  One that alarms LOUD and Proud and can't be turned off unless a sample has been added to the strip.  Which on the surface, I know, sounds really mean.  But trust me, one time with that alarm going off and J won't let it go off again.

And the number one device...would be...

A cure.

How is that a device?

Hello...FANTASY device.  I'll let the fantasy world work out the deets on that one.

This concludes day 4 of D Blog Week...to see other blogs on this topic visit the link HERE.

Tuesday, May 15, 2012

D Blog Week: Diagnosis M.C.A.F.



Today's topic for D Blog Week is "One thing you need to work on."


Sharing my secret shame:  That's what I get for blowin' my own SWAG-nificent horn yesterday...

 I get put in my place.

I've written about it before.  But it's bad.  It's real bad. 

I have M.C.A.F.

Midnight Check Alarm Fatigue.

If you aren't familiar with this condition, here is an excerpt from Web MD:  The deterioration of certain ear parts, and subconscious elimination of alarm sound in the wee hours of the night.

In other words...I don't wake up to my alarm anymore.

(FYI:  That isn't on Web MD.  I made it up...except I didn't .  It's really real.)

I'm so far progressed in this condition that I honestly don't know if the alarm blares music at 10 million decibels, or if it just doesn't go off at all.  There is also a scenario that it  gets turned off by the angels, or Satan....or me. 

I have no recollection of it in the morning, and I'm not happy about it.

Maybe it is years and years and years of me waking up multiple times a night.  Maybe my body is rebelling.  Maybe my brain has to completely check out at night to survive these days.  I don't know. 

I WANT so badly to hear it.

 But since I don't...I have no choice but to stay up.

Lately if things are awry, I'll stay up until 12:30.  If things are really bad I'll ask Ryan to get up for me after that.   Sometimes I set RYAN's alarm, have him wake up, so he can shake me, so I'll get up.

It's one thing that has fallen apart in my diabetes management.  I'm not writing here to argue the merits of a the nighttime check...I believe in it for a million reasons I won't write out today. 

But it is what it is.

Something I need to work on, or rather, something I need to find a solution for.

Luckily, the mySentry alarm DOES wake me. 

Weird.

Classic diabetes conundrum.  Diabetes management never makes perfect sense.

Maybe if I start a M.C.A.F. support group, I'll be able to work through my problem.

I'll be the President.  I'm opening up the floor to nominations for VP.

Wait...do support groups have Presidents? 

Let's make it a club instead...

See how I made my problem fun???  Clubs are fun!  Here is a pic of me in one of my first clubs...
The Starlets!

And how dare you accuse me of using a cute pic of me in a Garfield shirt to distract you from my secret shame!  Well, I NEVER!


D Blog Week: I got the moves like SWAG-ger

Today's prompt asks us to be totally conceded and tell everyone how great we are at something in regards to our children's diabetes care.


How am I supposed to spout out how great I am at something?

I mean, really?  For someone like me it seems close to impossible...

Because I'm really not great at something...

...

I'm AH-MAZ-ING at something!

Great doesn't even begin to cover it.

(lol!  I made a funny!)

Today I am going to talk about one of my super powers.  SWAGing.

For the newbies out there, SWAG is a acronym for Sientific Wild A** Guess.

I do this "SWAGING" thing when I am counting carbs. 
Which honestly, I think I do more than anything else in life.

I'm so good at it, I've got my kids convinced that I am magic.  They will often eat a plate of food in one room, and then come into the other room where I am and say, "How many carbs?"

"ummmm...let me look in my crystal ball.  Seriously?"

Just as outrageous is the phone calls I get every day at lunch.  My two littles call me before lunch to get their lunch insulin.  This means I have to GUESS what they are going to eat.  Luckily, I pack their lunches and learned the oh so smart trick to give them VERY little lunches.  1/2 sandwich.  1 yogurt or 1 cheese stick.  Crackers or pretzels or chips.  They eat the fruit I pack them for snack.  This means they eat what I give them.  Then, when they get home they have a big snack.  

Calling from school for me to count birthday treat carbs is another example.

"It's so and so's birthday...we are having cupcakes...how many carbs?"

"How big?  How much frosting?  Is there candy on top?   Is it homemade or from a store?"  (Sadly, this conversation is the story of my life since it is the last days of school and party-pa-looza.)

Now I know what you are thinking.

"Meri, why don't you create a website where we can download pictures, and you can SWAG for everybody all the live long day!"

Alas, I cannot.  Because sadly, there is a caveat to my super power. 
It only works for my boys.  No one else.

When I meet up with other T1 families, I'll often get asked the question, "How many carbs do you think?"

But I've found that carb counting is very individually specific.   My boys are true examples of that.

Subconsciously, and within milliseconds of seeing a plate of food,  I'll adjust carbs to the situation, taking into account past highs or lows at certain times of day, past effects of food on blood sugars, and activity of the day...so on and so forth.  Case and point.  All three of my boys get different carb counts for the same bowl of cereal in the morning.

My endo and nurse hate that I do that.  (Waving our diabetes team in SF right now!  HI GUYS!)  They hate it because it provides more work for me...but honestly there are like 50 variables that go into how I SWAG a meal, and I can do it in seconds of calculating.  No other human can do it for my boys like I can.  (Except my SIL and my husband. They are almost as good as me, but they are good at everything, so it isn't fair to compare.  My husband wants to me to add here that they are my Scottie Pippen to my Michael Jordan, but this is my blog, and no sports analogies are allowed....wait... )

Anyway, my system works for us.  I can SWAG in the most unlikely of conditions in just a glance. 
It's been 14 years.  It is part of me now.

But there is a humbling factor to all of this.  J has been SWAGing for himself for a good two years now,
and he is better than I am.

Poo.

I don't know how that little sucker does it, but he gives me a run for my money.  I think he was sent here to keep my ego in check.

So yeah, my head won't blow up from swagging self adulation.

 It is probably for the best...my brain is swelly enough as it is.

This concludes day 2 of D Blog Week, masterminded by the incomparable Karen at Bitter Sweet.  Want to see who else posted on this topic?  Check it out HERE.


Monday, May 14, 2012

D Blog Week: Call of the Wild...card.


This is day one of D Blog week...

SQUEE!!!

All my favorite peeps throughout the blogosphere are coming together and posting the entire week on a chosen set of topics.

Today is:  Find a friend.  Introduce us to a blog you love!

But I can't do it.  I can't choose just one person, (or 2 or 3 or 4.) That would require making a decision, and I am really sucky making these "decision" things these days.  Maybe it's my inner don't-want-to-disappoint-anyone copping out...but every blog is amazing, and has so much value!  Above is a tab that says, "More Sweet Peeps."  Click it and transport yourself into blogger heaven baby!

I'm going for the wild card today!  'Cause I'm super rebellious WILD like that!!  The Wildcard is: Something Good to Eat.  Share a favorite recipe with us.

Yesterday was Mothers Day.  I was spoiled.  Not shockaprising to say the least.

I got an ipad, because yeah...I'm not online enough.  I got beautiful homemade cards and pictures, and even a box full of love and adoration from my 14 year old J.

But the bestest part...was breakfast.

Ryan always cooks the most amazing breakfasts.  This is what mine looked like yesterday:

Eggs Benedict!

I know...WOWZA!  And it tasted even better, if you can imagine.

So today I'm going to share Ryan's secret, on how to poach an egg. 

1) Get a big pot, like about a 10"-12" pot and fill it up with 4 to 5 inches of water.

2)  Add about 1 Tablespoon of White Vinegar into the water.

3) Bring it to a light boil.

4)  Crack an egg in a small bowl or cup.  Crack another one in another small bowl or cup.

5)  Take a spoon and make a whirlpool in the water.  Going around in circles with the spoon.

6)  As soon as you pull the spoon out, gently pour/drop in one egg in at a time, try to leave space between the two.  Ideally the eggs will turn around and the whites will fold over the yolks.

7) Set the timer for three minutes.  No more stirring.  Just wait.

8)  When the timer goes off, scoop them out with a slotted spoon.

Viola!

An English Muffin.  A poached egg.  A little hollandaise sauce.  A slice of Canadian bacon that has been fried.  And if you are like us...maybe a little avocado or asparagus on top.   All topped with a sprinkle of paprika.

YUM!

I have to admit, it tastes even better when you have someone else doing the clean up! 
(Told you it was a rockin' Mothers Day!)


This wraps up day 1 of D Blog Week!  PHEW!  Just under the wire!  Thank you Karen for all your hard work making this happen!  Want to sign up?  It isn't too late!  Sign up HERE.

Sunday, May 13, 2012

We are the D Mothers

We are called D Moms.  D Mamas.   Even Type 3's.

Sometimes we get a bad rap.

~We're too "intense."

~We worry too much.

~We are overbearing.

~We over think.

~We over react.

~We over manage.

And I only have one thing to say about all of that...

You are probably right.

I want to tell you that if you are a parent, you can understand.

But that is not true.

I want to tell you that if you have diabetes yourself, you can understand.

But that is not true either...just as I will never fully understand your diabetic life,
you will never fully understand mine.

The only way you would understand what goes on in the swelly brain of a D Mama,
is if you were a D Mama yourself.

We are special.  Chosen for our story, as you were chosen for yours.

We are fighters, and we will fight until our last breath to keep our children safe.

New technologies like fast acting insulin and insulin pumps provide keys for better management, but they also provide a clear and present danger at all times.

We have to be vigilant.

We look into the eyes of our children and we love them with a bright tenderness.  We want more than anything for them to live a life free from restrictions, free from prejudice, free from complications, free from emergency rooms and hospitals.

We feel a responsibility well beyond any bounds of normalcy.  We do not want to live a life of regrets.  One day we will need to look into the eyes of our adult Type 1 Children and we want more than anything to say...
"I did my best."

The mothers of Type 1's spend every day racked with guilt.   Every blood sugar number pierces our heart.  We feel responsible for every high and every low.

An argument can be made that diabetes is responsible for every one of those numbers, but in our eyes...whether a reasonable notion or not, we feel they are a reflection of our efforts.

We may not always admit it to you, or to ourselves...but we take those numbers personally.

The A1C isn't called the mommy report card for nothing.

We do not sleep.  That is a choice.  We choose to keep a close eye on the numbers while the world takes a break.  We don't take breaks.  We know that waking up with a off number can domino to the rest of the day. 

We know that pancreases sputter.

We know the soccer game from 5 hours earlier can affect the nighttime numbers.
(Yet we urge them to play.)

We know that Pizza can wreak havoc hours after consumption, and we know that Chinese food for dinner means a sleepless night for us.
(Yet we delight in serving them their favorites anyway.)

We know that diabetes never sleeps.  That is why we don't either.

We know that a 200 can turn into a 52 in 30 minutes flat.

We know that on field trip days our children may spike with excitement, or bottom out from activity.

We know nothing is for sure.

So we check, and constantly ask our children how they are feeling...and we hover...watching every move...looking for changes in our children's faces...changes in their gait...tiny beads of sweat on the back of their necks...we know the signs of lows.  We know our children better than anyone else.

We love hard.

We try hard.

We cry hard.

We hug hard.

We hope hard.

We stress hard.

We are hard on ourselves.

We are D mamas.   

Don't judge us because we fret over the details.  To us...Our Diabetic Life is all about the details.

We are 100% responsible for the well being of children we love more than anything on this blessed green earth.

No, we will not back off.

No, we will not calm down.

No, we will not stop making noise.

As mothers, we know that our children are special.  Diabetes makes them stronger.  It makes them resilient, responsible, amazing.  It gives them a sense of humor.  It makes them grow up too fast, and let's them spread their wings too slow.

We wish we could take away the pain. 

We wish it were us.


We are warriors.


We are D Moms.


Hear.   Us.   Roar.


Tuesday, May 8, 2012

My life: The million piece jigsaw puzzle

My life is a puzzle.

It's sitting in front of me in a million different pieces.


I want more than anything to put all the pieces in their place.  I don't like clutter. 

But the pieces shift and situations change.  Just when I have all the edges picked out of the pile...the edges morph into center pieces.  Their smooth lines change to curves and pointy 45 degree angles.

I spend my days mentally trying to put it all together.  Trying to make sense of the big picture.

I sort out my thoughts into separate color piles.  Organizing my feelings in each situation.  Are these feelings here because of the cancer?  Am I angry right now because of diabetes?  Am I scared or am I just a human being feeling what should be felt?

The biggest problem lays in the fact that I'm not in full control of the puzzle.

People, problems, life...they walk into my swelly brain and mess with my progress.

These days, the puzzle doesn't seem to be any more closer to completion than it was a month ago. 
I just want to make progress.

But it is blaringly obvious to me that I'm not completely in charge of that.

Ryan's cancer decides on its own whether many of the pieces work or they don't.

The boys blood sugars have power far beyond my organization skills to mix up all my pieces again and again.

Looking at it sometimes...all I see is a big fat mess.

I put one foot in front of the other...one piece connecting with another and I keep going because I have faith that the full picture will emerge one day.  Imagining the successful future of our picture gets me through.  I'll work on this puzzle forever because I know we can eventually make it a piece of art.

The pieces are a big chaotic mess right now, but on the other hand I realize there are enough pieces at my disposal to make something out of them...smaller sections of beautiful.   And that is something. 
A very big something.

Maybe not everything fits right now...but my children are here.  My husband is here.  He is alive, and smiling.  I have my home, my family, my friends, and my faith.

All the pieces are there to make an amazing future.  Well...most of them.  Cancer is holding a few pieces hostage at the moment...but we'll get them back.  I have to believe that. 
Believing that is what keeps me moving.

Puzzles aren't meant to be put together in a single moment.

Puzzles take time.  Patience.  Faith that we can do it. 
And above all, the belief that there is a worthwhile  final picture.

Sure, the final picture I imagine for our family requires a miracle... 

But I believe the man upstairs is sorting those pieces into cohesive piles as we speak.


After all, he created the puzzle in the first place.  I need to stop scrambling and have faith that he'll guide our family to the finished product.

One prayer at a time.

One piece at a time.


 

Friday, May 4, 2012

Atypical ranting soapbox mama

I'm in a mood.  I'm wagging my finger and double air snapping all over the place.
Oh look!  A soapbox!  Looks inviting... 
Listen up!

It is real.

Diabetes is not a joke.

People honestly think that fat people just need to eat less and diabetes will disappear.

Diabetes is not a fat person's disease.  It is an everyone disease.

Type 1, Type 2, Lada, Gestational, all of it...everyone is a target no matter what your waist size.

My boys have a type of diabetes called Type 1.  It thrives in the otherwise healthy population.  This particular type is autoimmune...it is serious...it is not a joke.

Diet won't make it go away.  Diet won't make them "better."
 
Their pancreases do not make insulin.  NO INSULIN.  Too bad every one's bodies need a constant stream of insulin to survive.  If insulin was only kinda important it wouldn't be a big deal.  But insulin is very important...so important that just a few hours without it is an emergency...a life threatening emergency.

But the world turns a blind eye and doesn't want to see what a serious thing it is. 
Story time.  TRUE story time.
 
Grab a blanket and some cocoa 'cause it's gonna get all kinds of real up in this blog...

Today I was picking up my boys from school.   My nephew attends my littles school and I was chatting with my sis.  We said goodbye and within minutes she doubled back to find me again.

"Meri!  Did you know L is laying down on the ground...in the middle of the playground?"

I ran over to him and found him face up laying flat on the ground. 

"What's up L?  Are you low?"

"No...I'm just so super tired.  My body doesn't want to work.  I just want to sleep."

"Are you sure you aren't low?"

"I am sure.  I checked my sugar before school was out and I was a little high.  I gave myself insulin"

We get the car and pick up his brothers at the Junior high and High School.  We run to the outlet mall...I need a baby shower present and L needs shoes.  Like...his shoes are 2 sizes too small...

But as we are walking into the mall L says he is going to throw up.

Blood sugar:  592.

I check his pump.  His reservoir is full of insulin.  I check his history.  Yes, he gave himself lunch insulin.
 
I have him bolus himself insulin to correct his sugar and send another child to the drink machine to buy L a bottle of water.

But my gut tells me something is wronger than it seems, so after the insulin is injected, I take off his set and prime out a unit of insulin...just to make sure it is working. 

I hold his set up to the sun so I can see more clearly...
Nothing is coming out.  
I try again.  A tiny speck appears. 

"What do you think J?"

"That isn't a unit." Says J.

Then I feel it.  Insulin on my hand.  The tubing cracked and L wasn't getting any insulin at all.  I look at B with my mouth agape.  B returns my stunned gaze and says, "dot dot dot."  Which is his way of saying  "..." which is his way of articulating an uncomfortable pause or heavy moment.  Probably a sign that he plays too much Mindcraft, but I digress...

L is about to lose it.  We run to the bathroom and he composes himself.

So then I order B to take his pump off and give it to L.  I give L the proper amount of insulin through the prime so it doesn't show up on B's IOB.  And I leave the pump on L...he needs the insulin more than B right now.  

What kind of choice is that?  Not cool fates.  Not cool.

So we get home and this is what I find.


And checking ketones takes a lot of extra blood...more than a normal blood sugar test.  And blood spurts all over me...

And my baby looks like this.


And so I throw on new tubing and a fresh reservoir with fresh insulin for good measure.


I insert the needle into my boy, and pull it out leaving the tubing inside.


I spend the next two hours monitoring ketones and blood sugars and finally realize...

Meri...you can breathe.  He is going to be okay.

But here is the kicker...

What if I didn't test his sugar?  What if I left him and figured he had the flu?  What if I didn't test him at all the rest of the day? 

I'll tell you what would have happened...He would have gone into a coma...or even worse.

Now I know you are all rolling your eyes and thinking:
"MERI!  That would never happen!  You are a rockin' pancreas.  You always are vigilant about checking your boys.  You would never ignore symptoms and not check him."

And you are right.  I never would.  But it happens around the world...ALL THE TIME.

Maybe a family can't afford the test strips.  They are a dollar a piece.  Some families can only afford to test their child one time a day...if at all.  Some families can't even afford insulin for crying out loud!  And they have to CHOOSE to let their child die.

There are teens out there, adults even, that don't test for days.  Maybe they weren't educated about the importance of it.  Maybe they are just so darn sick of CONSTANTLY CHECKING ALL THE TIME.

There are people out there misdiagnosed as Type 2...when they really have Type 1.  I can't even properly relate how dangerous this is.  Most Type 2's can go without insulin...there isn't a Type 1 in the world that can go without it.  (Most type 2's make insulin...it is slow and sometimes insufficient...but it is present.)

It's serious. 

I'm pretty okay with that.  On hard days, like today, it is hard to be okay with it.  But for the most part I accept our story.  We can do this.

But so so many are misinformed.  Even by doctors.  Misinformation is just as much an epidemic as diabetes is.

And those on the outside looking in think it is a dietary issue.   That's just cruel.

Our life is REAL, and SERIOUS every day.
 
And lest you want to gag...I want you to know I am honestly not complaining...

I'm just seriously gobsmacked with the misrepresentation diabetes has in the media.

I'm getting off my soapbox now...and going to bed.

For a couple hours anyway...

Because at 2am I will be checking blood sugars and ketones again.  Because diabetes never sleeps and not checking is a gamble.

Sure, the odds are in their favor that they will wake up alive even if I don't check.  But I don't play the odds when it comes to my boys. 

I don't gamble with my children's lives.

Because as I said before...Diabetes is serious.

How can we get the world to see?

(Wow. How did this soapbox get into my bed?)

Lights out on my rant.

Good night.

Wednesday, May 2, 2012

Ruh Roh.........Hacker Alert

First I would like to apologize to all the people who receive emails automatically from, and the group of readers who check in to OUR Diabetic Life.  This is not the usual witty, well crafted, insightful post that generally comes from this blog.  Grammar? Whose the Hells needs Grammar? This is not even the person who writes the blog, it is her husband, Ryan.

I do have a swelly brain, not the original one but I do have pictures to prove mine.  In this post I will add some things I like……I like to call them “flairs.”  I may throw in one of these !!! Just to add a little spice. I even plan on posting a picture and adding a song.  Now don’t think I’m an amateur at this, I have my own blog! Oh ya, it’s called “Welcome to My World, a husband’s feeble attempt to enter his wife’s world in order to get closer to her.”  Started it a year and a half ago, I belted out 6 posts...believe me they were epic.

Now Meri has asked me in years past why I never comment or guest post or even read her blog.  She talks about other male bloggers and awesome observers like Fred Cunha, Manny Hernandez, and Mike Hoskins.  That’s when my blog idea came about, but I started thinking about all the pressure of having everyone know that I was Meri’s husband and my posts and comments be….. dare I say at times inappropriate or not politically correct. What also came to thought was I didn’t want to ride the coattails of my famous wife.  So conflicted, I thought of Emilio Estevez, he not wanting to ride his dad’s fame, changed his name.  So I came up with this idea of creating an alter ego, someone that wouldn’t be tied to Meri and she would know it was me……..I called him Enrique Ferrell (I was thinking of someone sexy, everyone name Enrique is sexy, and funny, Ferrell, cause I think Will Ferrell KILLS!) I know what you’re thinking………this guy is either making this up or he’s crazy………it’s the latter, this is a true story.  It’s CRAZY love.

OK so on to my list of things I want you, Meri to know, and a few things I want the blogosphere world to know.  I want you to know it tears me up inside that I’m putting you through this.  I also want you to know I thank God it’s me and not you.  I don’t think I could be as strong as you watching your soul mate go through this, you are MY hero!!!  I want you to know that is the most twisted 3 sentences I have ever put together, they contradict each other and almost don’t make sense.  I want you to know that “spoiling” you make me feel like I’m doing something of worth.  You are the most important person in my life and that’s where all my efforts should go.  I want you to know that I don’t “think” you’re beautiful, you light up my life and any room you walk into.  I smile at you after a disagreement because you are so damn cute and it’s not worth a second of our time to be cross with each other.  I want you to know that as years of our marriage continue to grow they only get sweeter.  I can’t believe how blessed we are. I give you all the credit for the boys, they are so awesome. So much better than I was and that’s on you.  Without you I would still be stuck in the bakery, thank you for believing and seeing something in me I could have never comprehended on my own.  We have been married 6941 days and I’ve loved you every single one.  I want to add something that will “B LOW YOUR MIND“ (in the words of Jack Black,) but I tell you everything :P   I want your friends to know I appreciate all of you and the support, prayers, and love we receive from you each day. We feel these physically every day.  I will dedicate hours at Friends for Life just for hugs (I’m a hugger). I had a hard time realizing you all were real people but did get that realization before all chaos came into our life.  I see the support Meri gives and takes and it’s a beautiful thing.  I want you to know my family and I will make every effort to pay forward all the acts of kindness offered to our family.

Meri you are my best friend and I love you with all my heart and I know you feel the same way. I look so forward to a bright future walking hand in hand in love forever and always.

I said I’d post a picture and a video…..I lied. Just a video if I can get it on :) I think this song was written for Meri and I..

http://www.youtube.com/watch?v=pG1pG47XStA&feature=player_detailpage
 
 
Ryan