Wednesday, March 31, 2010

Sometimes...

Sometimes at night, when the alarm goes off…I have a mini fit. I thrash my legs and moan like an 8 year old tasked to do the stupidest of chores. I am freakin’ tired. I roll out of bed walking back-bent-arms-hanging, channeling all my anger to the Legos on the floor, wondering when, if ever, I will get a good night’s sleep. Once I get to the boys though, my heart usually softens. Their sweet faces calm my shaking hands and my selfishness turns to concern as I check each boy and assess their situation. But when I get back to my bed, I fall in like a dead body; face first…KERPLAT…on to my pillow. Wondering if I’ll be able to fall back to sleep, angry at the exhaustion that has taken over my body. Sometimes.

But most of the time, I just hop out of bed and check. No biggie. I’m not angry, or tired, or anything. I do the deed and go back to bed. Most of the time it is just a simple correction or a little banana or pudding to get things back to where they need to be. I climb back into bed and fall asleep before my head hits the pillow. Done and done.

Sometimes I question myself. I’ll give the boys breakfast insulin and send them to school wondering if they will be ok today. Because sometimes I don’t do what the pump tells me to do. Sometimes I go rogue. I know that J has track, so I’ll scale back his insulin. I know that B has called me the last few days with higher numbers, so I give him a bit extra. I know that L has needed an extra snack for a week, so I give him less insulin. So I’m guessing. And sometimes when I guess…my entire body fills with worry sand, and I feel like I am 200 pounds heavier. On these days I feel clumsier in both mind and body, and I can’t think straight. And I pretend that I’m not worrying…I tell myself over and over and over that they will be ok. Sometimes.

But most of the time, I give insulin and I don’t worry. We have done this everyday for forever, and everything will be ok. And if it is not ok, then there was nothing more I could do. Most of the time I am at peace with my decisions. I know that my guesses are educated guesses. I live and breathe diabetes. I am not perfect…but I am capable. Most of the time. Done and done.

Sometimes, I’ll look at a pile of bloody test strips on the dresser, (aftermath from a long night,) and I almost throw up a little in my mouth. It is the grizzly reality of our life. Sometimes, there can be 20 test strips lying on the boy’s dresser from the evening before and a couple checks through the night. I pick each one up to throw in the garbage. It hurts my heart as some of them stick to the dresser. Tears come as I wonder if this will always be our reality. Wondering if there will ever be a cure. The image throws me…and validates all my anger towards this disease. I think of their callused fingers and I want to roar like a mother lion that is protecting her young. Sometimes.

But most of the time, I’ll clean up the strips and disinfect the area like I always do and it is the most normal of things. It is not big deal. Test strips are nothing new. Hell…they are EVERYWHERE. Normally the strips go straight to the garbage or in a cup I keep next to their supplies. I am thankful for being able to test. This instrument is fairly new in this world. How blessed am I to know what to do at any time of day just with a poke of the finger? I thank the Lord for that monitor. Most of the time. Done and done.

Sometimes I let my brain go to that dark place. The place where the seriousness of this disease is magnified and made uber clear to every one of my mommy senses. Sometimes, like this week, I hear the stories of children dying in their sleep from Diabetes and I have what I call, “a silent freak out.” I don’t talk about it. I pretend I am not worrying about it. But it is there in my mind. So when something else comes up that is frustrating, I lose it. I lose it over the littlest of things. Not because of the little thing, but because of this secret worry that has burrowed like a mole deep into my head and is planning to hibernate there for the winter. There is this background worry that affects every aspect of my life. It defines me, it puts me on edge. And at these times, I hate diabetes. Sometimes.

But most of the time, I am grateful. I see the blessings right in front of me. They are vibrant, smart, and amazing. They can do anything. Nothing can stop them from achieving their dreams…not even diabetes. I am grateful that they are alive…that they don’t live their lives in a hospital. That diabetes has made them stronger, more empathetic people. What doesn’t kill us makes us stronger. We are a close, united family partly to do with diabetes. We are blessed daily with technology that makes this disease manageable. We are a family that loves each other, and when it all comes down to it…isn’t that all that is important?

Yes, sometimes I am an emotional wreck. Thankfully, most of the time…I am Ok. That is why I am the Jekyll and Hyde of the blogging world. One minute I am preaching how manageable diabetes is, and that it gets easier, and that newly diagnosed families will adjust to the craziness of it all…and the next minute I am heartbroken…scared and unsure of myself.

I had a friend tell me once I certainly must need therapy with all I have on my plate. That may be so. But I think for now, I won’t take that path simply because “most of the time” I’m still Ok. And the “sometimes” that I am not…well…those times don’t last long. Those sometimes moments are the reality of what this disease dishes out. Diabetes isn’t going anywhere anytime soon. I accept that. And I always know that that through the rain clouds the sun is always there. We just need to be patient…the sun will make itself known eventually. Sure, some storms last longer than others. But that is with every aspect of life.

When we were new to this life…when J was just a baby… things were different. The bad times seemed like they were most of the time. And it seems that only sometimes we got a taste of what was “normal.” As time passed…the two switched places. I often tell newly diagnosed families that things will get easier. It sucks that easier doesn’t mean easy…but it does mean life will be better than it is now. So much better that you will feel normal again. You WILL feel alive again.

I get that normalcy most of the time.

And the sometimes that I don't...well, I blog. And it makes me feel better. :)

Wednesday, March 24, 2010

Diabetic Ingenuity

My 8 year old B grabbed my hand last night and declared he had fixed a long standing problem in our home.

The pitcher that we use for our Sugar Free Cool-aid/Crystal Light has a rip in the spout. When we pour the drink...often red, or pink...it dribbles down the side of the pitcher and splats onto the counter top. My boys know this annoys me to no end. They are required to use 409 every time they pour a drink to clean away the stain that is left.



Should I get a new pitcher...of course!

But it always seems to evade my shopping list and has just stuck around for the last few months as a thorn in my side.

But back to earlier...B had declared the problem fixed...

He took two new test strips and peeled them apart, which any diabetic kid worth their salt knows this turns the strip into a sticker. He then bandaged up the tear in the pitcher and Ta Dah!!!!!!!!



He was so proud of his smartness!!! But alas...they had to come off. If one of them un-stuck and fell into a drink, and then someone swallowed it, well...not good.

But Bravo anyway! His genius shines! I wonder if Einstein had such ingenuity when he was 8 years old?

Monday, March 22, 2010

The Ol' Switch-A-Roo

We have three.

Three boys who have Type 1 Diabetes.

Three pumps that deliver insulin.

Three of each.

Each boy has their own color pump. J’s is blue, B’s is purple and L’s is…well Zebra. We got all the boys stickers that go onto their pump to keep ourselves from mixing them up. J and B ripped theirs off within a month…L kept his zebra stripes, and is still very proud of them. Needless to say, we never mix up L’s pump with anyone else. L is the Zebra…my other boys wouldn’t be caught dead with zebra stripes.

But the blue and the purple…well, they are not as simple.

It’s a dark purple. For sure not blue, but not obviously bright or anything, and when you are doing set changes in the middle of the night, they look almost identical.

(You already know where I am going with this…right?)

So the other night it happened. Ryan set up the pumps, refilled with insulin and put them on the respective boys. And when I went to calibrate J’s new CGM with his pump, I was horrified to find that it wasn’t working. There was nothing there that indicated that the CGM was communicating with the pump. Even worse, when I went into J’s system to “find sensor” it didn’t show that the sensor feature was even on! What happened? Do we have to redo all of the settings every time we change a set?? It was like the twilight zone! A bad dream, that was real! Ryan and I puzzled for awhile. I was gobsmacked! How in the freakin’ world could this have happened??

It took awhile for us to figure out that Ryan had put B’s pump on J. Too long if you ask me. In hindsight I feel like what my hubby and I call a DOPUS. It’s kinda a mix of Dope and ignoramus. It was a real wake- up call because A) J gets twice the insulin B does (Hello scary, B’s blood sugar would have dropped like a brick in no time!!) and B) B get’s half the insulin of J. (Hello scary, J would have had so little insulin, his numbers would have been THROUGH THE ROOF in the morning!!)

No, it’s not the first time it’s happened. After bath and showers, they have put the wrong ones on themselves. It’s not completely problematic because it happens very rarely.

But it only takes ONCE to make a mess of things.

ONE TIME.

I think that is one of the greatest arguments of why diabetes sucks so much. There isn’t leverage for forgetfulness. You can’t afford to “forget” to bolus after a meal. You can’t afford to “forget” to check blood sugars. You can’t afford to “forget” to correct a high blood sugar. You can’t “forget” that J wears the blue pump and B wears the purple one!

No forgetting allowed!

EVER!!!!!!!!!!!!

That is why our brains are running a mile a minute, all the time, 24/7.
And that is why when we don’t have a diabetic child with you, your brain jumps into some kind of tailspin of emotions wondering where all the thinking has gone. Guilt for not thinking about it. Confusion as to why you stopped thinking about it.

Our brain gets tripped up going from 100 miles an hour to 0 miles an hour.

Hard to relax when you don’t HAVE to think about diabetes. But really, when do we NOT get to think about it?? Even when the boys are at school, they are calling me with their numbers and carb amounts, alerting me to any extra exercise and such. When they are not with me, I am worrying…I am THINKING ABOUT IT!!!

The only time my brain really gets a break, and no it isn’t at night when normal people sleep…HECK NO! It is when I go out on a date with my hubby, and my sister in law babysits.

She knows what to do. I TRUST her. I can honestly throw the kids out of the car and know they are safe and their diabetes is handled.

It is a gift. The gift to forget.

My husband and I didn’t get to go out this weekend. Trust me, my brain feels it. When you run at a 100 miles an hour for such a long stretch, your brain runs out of fluid, and it still continues to run even though smoke is coming out of your ears and the cogs are screeching so loud you just might think you are going to explode.


Sometimes I wish I could pull the ol’ switch-a-roo with someone else’s brain.
“OPPS! I accidentally grabbed your brain by mistake; I’ll give it back to you on Wednesday…”

Because the thing is, I am more than a pancreas. I am human, and I have normal everyday human things to worry about too. As parents of diabetics, we can just as easily overload on diabetes, as we can on every other aspect of life. And when the two or more of your cogs overload at the same time…well…I guess you get a blog post that ends abruptly and looks a lot like this one.

Friday, March 19, 2010

Second Verse, Same as the First. :)

It must be our lucky weekend, because I have another shiny new D Mom blogger to introduce to you all! Her name is April and her family actually resides here in my hometown! WOO HOO!

Her son "T" was diagnosed just last month, a week before his 13th birthday.

Won't you all show her some good neighbor hospitality and stop by her brand new blog to say hello?

You can find her at
http://thediabeteslearningcurve.blogspot.com/

Welcome April!!

Thursday, March 18, 2010

A New Extra Sweet Friend :)

Please pop over and say hello to our new friend on the block, Amanda!

Her 5 year old daughter Emma was diagnosed last year THE DAY AFTER Amanda had her third child! Emma also has celiac.

Her blog is at
http://extrasweetgirl.blogspot.com/

Welcome Amanda! We are happy when a new D Mom blogs, we know how much it helps our hearts...we hope it is balm for yours!

Wednesday, March 17, 2010

My swelling/hurty brain

Last night I wanted to throw my brain under a bus. No kidding, I was peering out the window hoping for the freak chance a bus would drive by. I wasn’t picky on the type of bus…any ol bus would have done…and once I saw it I would have tossed my swelling/hurty brain right out the window under its big fat wheels.

Dramatic much?

Before you go worrying about me, I did recover. Nothing a bit of chocolate and a new episode of Lost couldn’t fix.

But I digress. I suppose I should start from the beginning. The beginning that begins with the CGM trainer coming to our house to train us. (I LOVE how stupid that last sentence was!)

YES!! We have received our very own shiny BE-A-U-TIFUL Continuous Glucose Monitor. Hooray!!

We got it a couple weeks ago, but I didn’t put it on J right away. I wasn’t overly impressed with the trial we had last month. The Continuous Glucose numbers were not even close to his actual Blood Glucose numbers. I was all kinds of hesitant after the trial, but decided that a CGM was better than no CGM. And if nothing else, it could spot the trends of his days.

Well this trainer woman quelled all of my CGM fears. She swooped in yesterday and literally saved the day. She was amazing! She was truthful! She showed me how to work with it correctly…and I am NOT exaggerating when I say his Blood Glucose readings and his Continuous Glucose readings have been literally, like one point off from each other since we were up and running yesterday. For example, this morning it said he was 112. His blood sugar reading was 111.

HOLLA!

I’m trying not to get my hopes up…but whatever…I probably will anyway, because that is how I roll.

You’re probably reading this and wondering…”Meri, why would all of this greatness make you want to throw your brain under a bus???” And I would reply…”Keep reading friend, keep reading.”

So before our trainer left, she mentioned the fact that we can download the boys pump information online, as well as the information received by J’s new CGM. We just needed to buy this expensive receiver called a “CareLink.”

I went to my diabetes closet, because yes, we require a closet for our supplies, and fished out a CareLink receiver that was sent to us free at least a year ago. Our trainer was thrilled! “Set it up, and you will be getting J’s basals into shape in no time!” SO since she was so enthusiastic about it, and since our nurse at the Endo has been begging me to get this set up for a good year now…I decided to bite the bullet and set it up.

(This is the part where my brain swells.)

So right away I had issues getting started. So I called Minimed and after holding for a good 40 minutes I got this INCREDIBLY nice man who was willing to spend hours with me getting this set up. It took awhile, but mission accomplished. All three pumps were set up online and all the information inside them from the last three months was there before me in graph, chart, list and every other informational form you can imagine.

And the charts I saw from the last few weeks were BRAIN BOGGLING! It gave a percentage of all the blood sugars that were in range, and all that were not. And it wasn’t pretty. Page after page of numbers and information!!!

Enough information to put a woman who lives on the edge…over said edge.

Let me tell you, sometimes too much information is a bad thing. A really bad thing.

Some of you reading this may think you really would like to know that information because…

“LALALALALALALALALA” (fingers in my ears I am not listening you!) BECAUSE, trust me…you do not want to know!

I was so horrified, I had all the boys come to me one by one and I upped all of their basal rates for every time of day, except when they were at school. (Which resulted in B and L going low last night, which thankfully Lawton awoke me for.)

So after I changed everyone’s pump settings my husband could see the muscle spasm above my right eye, so he went out to get some chocolate to calm my brain. (He is a good man…but when he was teasing me late into the night I threatened to expose his evil ways on my blog. I told him everyone thinks he’s wonderful…I could change that in an instant! He wasn’t afraid. He knows I adore him. But it was fun threatening him with blogger blackmail anyway.)

By this morning though, I have been able to completly process all the imformation that my brain indulged in last night, and now I am feeling better. Today is a NEW day!! Onward and upward!

So here is, the end of my post. I just read the entire thing back to myself and realize I sound a little mad, like Johnny Depp Mad Hatter Mad…but I’m ok with that…because A) I think when it comes down to it, we’re all a little crazy, and B) Who wouldn’t want to be put in the same column as Johnny Depp?

Monday, March 15, 2010

My friend has lost her marbles!


My friend has lost her marbles
Won’t you take the time to look?

My friend has lost her marbles
It happened when her world was shook.

The rocking of her brain caused them to roll around,
And when she needed them the most, they were nowhere to be found.

Because they are smooth orbs, marbles can be tricky to keep in check,
They roll around your life and slip away when you’re a wreck.

She has looked in the shower where she cries from time to time,
And searched fervently in her bed where worries rock her mind.

She looked in the car where she’s always in a rush.
She even searched in places that would make a momma blush.

She tried by the scale where she weighs all of her son’s food,
(Because calculating carbs always puts her in a mood.)

She looked by the blood sugar monitor and the Ketone strips,
But when the buggers were not there, curse words crossed her lips.

Under her son’s mattress where she kneels to check each night,
There wasn’t a marble there, not a one in sight.

In a last ditch attempt she checked the Frigidaire,
It’s where she keeps the insulin, but alas they were not there.

It’s no fun to lose your marbles, trust me friends I know,
For I have lost my marbles, twas many years ago.

It hasn’t been easy to make it through without,
Living a life of worry and fear can fill your mind with doubt.

How can I survive without my marbles dear?
How can I make it through the trials of the year?

After many years of wondering it has finally come to me,
There is a way to cope, a way that sets my worries free.

What is the secret of filling up my mind?
It is putting love in the spaces the marbles left behind.

Love and understanding from those who walk along,
Fill those empty spaces and I don’t even know their gone.

So for my friend who lost her marbles, no worries! Be of good cheer!
I’m here for you always, and happy to lend an ear.

And really, marbles are overrated; their swirls aren’t so renowned,
They’ll never hold a candle to the marble-less friends that I have found!

(For my friend Lora...one of my favorite marble-less peeps. :)

Monday, March 8, 2010

Fun Fundraising, it's worth a try!

I love our dog. He is amazing. ‘Nuff said.

So why wouldn’t I try to raise money so that Dogs4Diabetics could help more people? I didn’t have to pay for Lawton. He was given to us free of charge. I feel some responsibility to share the love.

Last week we had our annual school fundraiser for Dogs4Diabetics at the boys’ elementary school. All the kids were asked to bring in one dollar sometime during the week, and if they did, they could wear their favorite hat to school all day on Friday. As I alluded to in my last post, I spent most of last week in classrooms giving presentations and answering questions about our dog, and about diabetes.

You wouldn’t believe some of the great, thoughtful questions that came from these children’s mouths.

Example: “If your boys forgot to give themselves insulin, they must have a lot of sugar staying in their bodies. How do they feel when this happens? “

You also wouldn’t believe some of the crazy, not so well thought out questions that came from these children’s mouths.

Example: “What would happen if Lawton would die, right here, right now. Would your boys die too?”

Over the past few years, I’ve learned that if I visit a class, and talk with them about what we are raising money for, the class will participate on a MUCH greater scale then those I do not speak to.

So this year I spoke to almost every class.

It was a HUGE success…an entire school of children wearing Disney hats, baseball hats, summer hats, construction hats…

And we raised….

DUM DA DUMMMMMMM!!

$1000.00

NICE!

This is a great fundraiser for your walk team too! Before we got Lawton we had the caps day, but instead it was, “Caps4aCure.” It is really easy to put together. A flyer in the school newsletter. A little spiel at the kid’s assembly. Envelopes with class lists attached, so the teachers can check off who brings in their dollar. Maybe a few classroom presentations. Kids wear their hats….BAM! Done.

(Our family makes dog bone shaped cookies for all the classes that have over 80% participation.)

Kids CAN make a difference. It is empowering. I hear stories every year of kids wanting to use their own dollar, or kids who ask their parents how they can earn more money to donate. The whole experience is so positive for everyone!

Give it a shot!

Thursday, March 4, 2010

Trying to find my auto pilot switch...

I’ve spent the last 4 days talking to classes at the boys’ school about diabetes and service dogs. I had my spiel down pat. I aced the “what is diabetes” lessons for the older kids, and scored when it came to “service dog etiquette” for the younger kids. But in true form…I am completely overwhelmed as I sit here with my thoughts. Speeches about our immune system and information about the body’s ability to make insulin are dancing in my head.

Diabetes overload.

Questions. Sweet beautiful questions from students and teachers who want to know more. Everything we have ever dreamed of. A captive audience who has questions!

Questions I have been waiting for people to ask. But at the same time, questions that have answers I don’t want to think about anymore.

Why?

How?

When?

Will?

What if?


I am overwhelmed friends. I’ve come home from a long day of lectures and I’ve had enough of diabetes. I don’t like thinking this hard about things.

I like to LIVE. Not obsess. And when your mind is stuck skipping like a broken record, diabetes is…diabetes is…diabetes is…You can understand that I just haven’t had it in me to blog.

Which brings me to my next subject. I have been SUCH a downer lately; I just want to slap myself. I know we all need to “lose it” sometimes…but that is not the person I want to be. I want to be positive about things; I want to look at the bright side.

And I do.

I’m just…

Overloaded right now.

So I guess I have to be careful for what I wish for. Because right now I have a school full of teachers and students that have a small idea of what my world is about. And they are feeling for me. And the weight of their knowledge is hanging on my shoulders right now. My life is out there. Explaining our life in simple terms seemed harmless enough…except for the fact that my brain is going to explode.

I need to reboot. I need to trash all the garbage that is going through my head and move on to LIVING again.

Where the hell is my auto-pilot switch????

I don’t want to consciously think about IT anymore!

Actually, right now…I don’t want to think at all anymore.

I want to go to Hawaii. Or Cabo. Or somewhere warm…and sit on the beach…and sleep…for like a month.

I know. Whiner whiner pants on fire. It is what it is.

I am wondering if some of this overwhelmingness (Yes I realize that is a made up word) is due to the fact that I haven’t blogged in almost a week. I'm hoping that now that I have gotten this all down on virtual paper…I’ll be able to get back to normal. Well, my normal anyway.

Not sure how to end this one. So I’ll just say this…

:p~~~~~~~~~~~to brain explosions.

:o) to weekends.