Cancer.

I don't want to write this post. In my past life, I wouldn't have written it. But for some reason, I know that I have to. For some reason, Ryan and I know it is important that you all know what is going on.


So I will do what I always do. I will write. Whether I like it, or not.

Before I get to the crap of the matter, you should know that my husband is the most important person in my life. He is honestly in every capacity of the word...my "best friend." My boys are important to me, they are my heart and soul...but they will find their true loves one day, and in turn be complete as I am. Ryan is my person. He is so much better than me, and his love is my greatest treasure.

I have always known that what I have with Ryan is rare, and special.

There isn't a day that goes by that I don't think to myself how lucky I am to have him.

We are one.

So why this is happening to US, I do not know. I can only believe that there is a reason. There is a greater plan that my eyes can't see yet.

Ryan has cancer.

Or maybe, he still has cancer.

I didn't really write about it a few years ago, but Ryan had Melanoma. It was one mole that looked like a pencil eraser, and we only had it removed because it kinda grossed me out. It wasn't black or asymmetrical or anything when we had it removed. The doctor sent it into pathology, just to make sure it was nothing. But it wasn't nothing. It was a big something.

Surgery and chemotherapy. It was a long haul, but we thought it was gone.

A few days ago we found out it isn't gone. In fact it is back in the form of 6 brain tumors, and multiple tumors in his lungs and abdomen. Metastasized melanoma. It's pretty much the worst kind of cancer there is.

But that is neither here nor there right now. Right now we are focused on moving forward and getting things done.

He begins whole brain radiation on Thursday. He will have this every day for a few weeks. He'll lose his hair and be tired, but we are hoping for lean side effects.

The next step will be more taxing. The original specimen of his cancer removed a few years ago is now being analyzed at UCSF. Depending on the mutation it has, we will form a medicine treatment plan. Chemo or immunotherapy. Both of the medicines that are on the table have been approved by the FDA in just the past couple months. We feel completely blessed, and don't feel it is an accident that we were diagnosed this moment in time. If we found out only months ago, these amazing therapies would not have been available.

Why am I telling you this? This is so personal, and usually this would be just too close to home to share with all of the world. But Ryan and I have the strongest impression that we need to share this with everyone. We NEED your prayers.

To be honest, we need a miracle.

We have set aside this Sunday, March 4th for fasting and prayer on Ryan's behalf. Our hope is that people all across the world, every denomination and belief, will pray for a miracle for Ryan. If you feel impressed, please ask your family and friends to participate. If you belong to any prayer groups, or if you have a close church family you can ask to join in, we would appreciate it more than you'll ever know.

God will provide. Let us bombard heaven with our pleas.

Facebook has already exploded with support. My inbox is full, My IM's are never ending, and my status updates are too numerous to keep up with.

Other D Mama friends have set up a facebook page for me. You can find it here. I'll post updates there. Please share the page with your family and friends. The more prayers the better. I can't help but feel deep down that this is true.

There is the craptastic truth. All of it. Uncensored.

How are we? We are on the roller coaster. We are laughing one minute, delirious with tears the next. But we FEEL the prayers. And our hope grows stronger by the minute.

Somehow we know we will be ok.

Somehow.

It won't be easy. But the craziness that lays in front of us will be worth it in the end. We stand ready to receive that miracle.

Pray friends. Just pray.

Luck, Scientific Genius, or Black Magic Wonder Woman?

An experiment? A Hypothesis? Call it what you may. But last night I tried a little somethin' somethin' out and got some pretty remarkable results.


You be the judge.

My feet drug as I slumped to the boys' rooms at 12:30am. My head was heavy, my limbs were rubbery and my head was filled with uncertainty.

As I checked the boys I spontaneously tried some black magic.

"Pleasedon'tbelow Pleasedon'tbelow Pleasedon'tbelow Pleasedon'tbelow."

76.

Crap.

Next boy.

"Pleasedon'tbelow Pleasedon'tbelow Pleasedon'tbelow Pleasedon'tbelow."

131.

YES!!

Next boy.

"Pleasedon'tbelow Pleasedon'tbelow Pleasedon'tbelow Pleasedon'tbelow."

72.

Crap.

Now many of you might think that my muttering was all for not. But I present you with the hard facts:

It worked 33% of the time. 1 out of 3 times. THAT is nothing to sneeze at people!

Those of you thinking I've lost it a bit might want to dispute the many other "scientific/black magic hypotheses" I have made throughout the years.

Like the fact that if the boys have a banana for snack at school...they only have a 30% chance of going low by lunch. No. I don't have the hard numbers to back that one up, but I've got something better. My gut.

One might think it is crazy to hold my breath through the tunnel near Sausalito whilst on the way to the endo's office...making a wish that all the boys A1C's will be better than I think they are.

Well here's a shocker for you. IT WORKS! Every time! Boo YEAH! Of course, I always THINK they'll be in the teens, but that is neither here nor there.

Some of you might think I'm off my rocker that when the phone rings I say a little prayer that it is a telemarketer. Better someone selling me solar panels than a boy calling me from school with a problem blood sugar, I always say.

Prayer works. Telemarketers are coming out of my ears around here!

Luck? I think not!

Why does bolusing 100 carbs, (120 if there is ice cream involved,) at the Chinese all you can eat buffet work ALMOST every single gosh darn time? I don't know. It just does.

The results are practically irrefutable.

I got a million of these folks! Grey shirts on Wednesday, Waffles on Mondays...it goes on and on!

Sure, what works for me might not work for you.

(Ok, what works for me PROBABLY WON'T work for you.)

But as we ALL know...

Your black magic may vary.  It's a scientific fact.

And the numbers follow...

The fact that our son M will be a Senior next year has been hitting us hard. Time is flying, and the time that we have to force him to be with us is getting slimmer by the minute. Because of this, we have been making it a priority to go out on family "adventures." A couple times a month we try to go do things our family has never done before. Yesterday our adventuring took us to a couple tourist destinations in San Francisco.


I keep replaying the day back in my mind. It was a whirlwind of fun, and a great family bonding day.

But whether we like it or not, diabetes is part of our family too. That means it got to bond as well.

It occurred to me that every wonderful memory our family has made...numbers are attached to it. Take this picture for instance...



We were on top of Coit Tower, and B and L were running high. I gave them less insulin for breakfast because we had planned to climb 21 stories of stairs to the top. We arrived only to find that the stairs have been closed for quite some time so we had to take the elevator. (I was part horrified, part completely relieved if you can imagine.)

The picture below is our family in China town. Everyone's numbers were AOK by then...but still, they were there in every moment.



And then, when B and L experienced Benihana for the first time...can you guess who was low?



We can run, we can adventure...but we can't hide. The numbers find us. They are a constant swirl of information above us at every moment.

The fact remains though...we had an amazing time as a family. We laughed and shopped and ate like nobody's business...and even after all that Japanese food..the boys went to bed with 112, 130, 117. (That last one was J's. He ate lunch with us, and then later went to an all you can eat Chinese Buffet for dinner with his friends. HOW DOES HE DO IT!!! I almost think he is magic.)

Anyway...we made great memories regardless of the numbers. The smiles were priceless, and the frowns were easily melted away with some fast acting apple juice, kindly comped to us by the bar for L's low.



The memories of the numbers are trumped by the memories of the fun. It is always worth the risk to take a journey away from the home. Maybe diabetes won't play fair...but you can bet your family will overcome and find a way to make it all work out in the end.

Fighting numbers is no different on the fly as it is at home. It is worth the chance.

And definitely worth the memories...

It comes naturally.

When we are suffocated with numbers. When we are buried in ratios that make no sense.

It comes naturally for us to rise up above the diabetes smog and find the air we need to keep going.

When our children are burnt out. When they voice their frustrations.

It comes naturally for us to lift them above us, and place them on the pedestal they deserve.

As parents we refuse to let the darkness overtake our children.

As parents of children with diabetes, we take the hurt and we use it as fuel to take that next step.

It is only natural for us to fight.

Because when it comes to our children there is no losing.

There is no surrendering.

Sure, there are times when we think this hole is going to collapse on us.

Sure, there are times when we are sure the sun has forgotten to shine.

Sure, there are days when we announce we are defeated...

even though we aren't.

Because even if we let the moment win...we don't let the despair win.

We rise up.

We check and we check again. We tweak and we tweak again.

Losing isn't an option when the very air we breathe lives with diabetes.

Having a bad day?

Having a bad week/month/year?

You are not alone. And even though you want to give up...even though you say you are going to give up...even though you are sure you are going to give up...

I know you won't.

I KNOW it.

(Because you haven't given up yet. Right?)

Look at your track record. You win every war.

You eventually win them all.

Here in the DOC there is an entire bottle of "same." Take two and you'll feel better in the morning.

It comes naturally for parents to hold the world on their shoulders.

Naturally, we want to take all the hurt away from our kids by using our super power: Love.

We want to, but the hurt comes anyway. All we can do is use our love to salve their pain.

Our love can't cancel out the pain, but it can soothe it...and that is enough.

You are enough.

Your works are enough.

You can do this.

Our children can too.

If you are consumed right this moment, remember that our lives on this earth aren't meant to be miserable all the time. We are meant to find the joy in the shadows of the misery. There will be moments that seem to be devoid of light. But it is all smoke and mirrors...the joy is always there.

We can find that joy in the smiles of our children. We can find it in the kindness of friends. We can find it when we help others.

We can and we will find that joy.

Because when we love our children as much as we do...

The joy?

It comes naturally.

The middle diagnosis.

Yesterday was February 12th. It came and went like any other day. We went to church. We went to my in laws. I helped B finish is big report. We had a beautiful dinner. We came home and watched Once Upon a Time as a family. We went to sleep.


But yesterday was much bigger than that.

Yesterday was actually the very day L was diagnosed. At the tender age of 8 years old, he would have been celebrating 6 years with Type 1 Diabetes.

We will find a way to celebrate this week, but it occurred to me, I've never told L's story in its entirety. I don't even know if I remember it in its entirety. But I'll try.

I know it was a Sunday, and it was two days before Valentine's Day. The night before my husband and I went out and bought each boy a box of heart chocolates. We had never given the boys so much candy on Valentine's day, due to the fact that J's insulin wouldn't tolerate it. But he had been on his pump a couple years, and he could eat what he wanted now...so we thought, "what the heck! They so deserve it!"

As it turns out, no one got the chocolates.  They sat in my  closet for months before I ended up just throwing them away.

Early on that Sunday morning L woke me up for some water. Three times.

When he came back for the fourth I said, "You better hope you have diabetes buster, because it isn't ok to keep waking up your mama for water." It was a joke, and at 2 he had no idea what I was talking about, but no sooner had the words left my lips when Ryan grabbed my arm. We both knew in that moment that we needed to check his sugar.

It came up 220 something. We looked at each other in shock. I scrambled for the phone to call my endo. I was hysterical. Our regular endo was on Maternity leave, and this one was very blunt.

"Yes, he definitely is Type 1 now. I don't know why you are so upset. It is what it is."

"HOW can you know that from one reading? You don't know that! Stop saying that!"

"Go in this morning for blood tests, we'll see how far down the road he is."

We went in and tests only slightly confirmed what we feared. But here is the kicker...his blood sugars went right back to normal the next week. And the next.

And we went into denial...big time.

As long as we didn't feed him any carb bombs, his sugars were perfectly fine. Once in a while we would get a wonky one. Once in a while a 300...but then it would disappear and all would be well. The scariest part of this time was the lows. More than highs, we would see lows. He would get shaky, sweaty and scared and we would give him some juice. His pancreas was confused...it would help out a little too much when there was a high looming. It made me wonder if he wasn't type 1...maybe he was just hypoglycemic.

You can imagine the roller coaster ride I was on. One day I was sure he was Type 1. The next I was sure he was not. Until a few months later when he got strep throat. His throat closed and he wasn't getting enough oxygen...they rushed him to the hospital and he was put on what I assume were steroids.

Diabetes and steroids don't mix. He needed insulin immediately. His blood sugar went through the roof and there in the hospital it was realized...we have two boys with Type 1 Diabetes.

But here is the thing. We were all so relieved that we didn't have to live on that particular is he/or isn't he roller coaster that we took off running and ready to battle. There wasn't so much depression as there was determination. J admitted that it was nice not to be alone. He felt so guilty about it, but he felt closer to L despite it all. He would even check his sugar for us, and get his site changes done first to show L it was, "No big deal."

Also, L was a couple years older than J when he was diagnosed. He could communicate when he was hungry and he could communicate that he was thirsty. It was much easier altogether this time around. We knew we could do it.

And we did.

Now B's diagnoses...number 3. I didn't handle that one as gracefully. In fact I pretty much lost it.

But that is a story for another day.

I am so thankful that we have L in our lives. He is so much fun, and is the biggest sweetheart. He is unique, and innocent and everything you would want in a friend.

He is adored.

and

He is my hero.

The deep-down-to-my-soul ugly truth.

I always try to be totally honest. I mean, is there any other way to find healing? Blogging helps me get to the heart of what I feel deep inside. Only good can come from that...I hope.

I begin typing today with no map on where I am going. Only the realization that everything is making me cry these days. Statuses on facebook. Blogs. Videos. If it references diabetes, inevitably...the tears come. They aren't harsh tears. They are soft, they are real, and they are all the time.

It is my goal today to get to the heart of that. I've been asking myself, why? Why am I getting so upset, so easily.

But sitting here in this moment, I think I've been asking that to myself all wrong.

I think a better question is, why am I touched so easily by what I read?

Why does it hurt today more than any other measure of time before?

Maybe because the boys basals are still a bit wonky. When things are not smooth sailing the reality of this disease bleeds into my emotions.

Ebbs and flows.

But I think there is more to it.

My boys are growing at an unbelievable rate. They are changing, and with those changes come memories of how things used to be. Remember when?

I think it bothers me that our family doesn't have a "remember when there was no diabetes." It feels like it has been around since forever. We had only started our family when J was diagnosed. He was a baby. And now he is a teenager, and before I know it he will be gone, and married, and starting a family of his own.

Which brings me to something that is making me sob as I type. I read on the ADA website, that the chances of my boys having a child with Type 1 Diabetes is 1 in 17.

That is doubled if they are diagnosed before the age of 11.

All my boys were diagnosed before the age of 11.

In fact, all of them were diagnosed before the age of 6.

The thought that more people that I love will have to live with this disease infuriates me.

I take my lot happily. I have no complaints that there are 2am checks and countless set changes and phone calls from school. But would I ever...ever...wish this worry on one of my boys?

Never. They have enough worry as it is.

They all want big families. They talk about it all the time, and more than anything I want that for them.

I would never tell them not to, or even insinuate they shouldn't. I had them, and I am so so thankful I did. Would I have them again if I knew what I know now. You bet your mySentry I would!

I just wish it wasn't a never ending cycle. I wish they could achieve their greatest dreams without heartache.

But in writing this I realize that everyone has their heartache. Diabetes or otherwise. Who am I to wish that they have only happiness in their life? I don't think perfect lives exist...and I truly believe that without knowing sadness, we cannot know joy.  I want them to know a lot of joy.  Honestly though, one in seven sounds so nasty.  It really is less than a 12% chance.  That is an 88% chance that their children won't have Type 1.

Man I hate percentages.  They are useless.  You just never know where you are going to fall.

I guess the reason it upsets me so much, is they already have enough to battle. What else is life going to throw at them? I can't bear to think about it.

I can't bear it.

Well there it is. Depressing, deep down to my soul thoughts, all wrapped up in a not so neat bow.

I would like Type 1 Diabetes to end here thankyouverymuch. In fact, I think I'm ready for a cure now.

There. I said it.

Don't shoot the messenger...you know you wish for it too.

The rest of the story...

Last week I posted about L's mysterious lows. I thought it was a fluke. I thought I could ride it out. But on day 6 it became blaringly obvious that it wasn't safe to sit idle anymore. I had to change basal rates.

For the record...I hate HATE HATE changing basal rates. I only find success if we are constantly battling highs. If we are battling lows, it has always worked in our favor to just ride it out.

My gut said, "ride it out!" But seeing another 40 stare back at me on Friday pushed me over the metaphorical edge of my sanity. (Which admittedly is very easy to do, but doesn't change the fact that those kind of numbers are just too dangerous.)

Must change basals.

L has a higher basal rate between 4am and 10am. I'm sure this is in place to battle the breakfast spike, but for whatever reason I decided that this would be the rate to change. I brought him down one little step. ONE. A small change, but one I hoped would domino throughout the rest of the day. The lows were starting at 9:30am-ish, so I thought I'd nip it all in the bud.

I made the change Friday after school which I knew would negatively affect his weekend. L always boasts much higher numbers on the weekend.

He was through the roof all weekend long.

"GOOD!" I said. Monday he will be perfect...I just know it! (I'm crazy that way.)

But alas, Monday yielded an epic fail. I bolused fully for breakfast and that spike got the best of us anyway. He was even 400 after school.

I shook my head and grabbed his pump. "We are changing your basals back. But instead of going until 10am, I'm going to cut it off at 8am."

So here it is. The moment of truth. It is 9:30am on Monday. Every minute I don't get a call is a victory.

I will now wait.

Waiting...

Waiting...

Waiting...

I have received the call. The snack recess call. The one of two calls I should receive from him while he is at school. (Last week we averaged 6 calls a day. FUN!)

He is 143. Woo to the freakin' hoo!

A little side note: Yesterday I had the stomach flu. Just me. Which is really weird, as I always get my bugs from the boys. Maybe there is an answer to our unsolved mystery. Maybe L had a bug last week and wasn't absorbing his food correctly.

I feel relief that we might be on our way out of the crazies, but at the same time I know...I KNOW...more crazies are waiting just around the corner.

It wouldn't be Our Diabetic Life without them.

(For those of you who do not pump and need clarification...basal insulin would be the long acting insulin you use. Our pump mimics your basal insulin by giving small puffs of the short acting insulin all day long. My boys have three different basal rates programmed into their pumps to counteract growing patterns, the exercise they have at school, and the morning spikes. Bolusing is the act of giving a short acting insulin when one of my boys is high, or is eating carbs.)

Unsolved Mysteries.

As every good mystery does, this one begins with a puzzling scene...

A boy checking his sugar 20 minutes after eating lunch and seeing a 47 blinking back at him. He shifts his eyes to see if anyone else can see the ghostlike numbers on his monitor.

He wonders if he is imagining it.

He checks again, just to make sure.

44.

He fumbles for his cell phone and calls his mother. She'll know what to do.

She is speechless.

"Mom? ... Mom?"

"I'm sorry honey, I'm here. Eat a bag of fruit snacks AND an apple juice. Do you think your tummy can handle that?"

"No problem!"

The scene switches to the mother. Even though she sits perfectly still on the couch, it is evident that her mind is working at lightning speed trying to calculate how much insulin is still in her dear little boy's system.

He'll call her soon. He always does.

But as an hour elapses she realizes that the call is not coming, so she grabs her coat and rushes across town to check on him herself.

As she drives by the school the landscape of the playground catches her view. There she sees her son's class having "free play." Children are running. Children are bouncing balls. Children are metabolizing much of the sugar in their body into energy.

She knows her son doesn't have enough sugar for that kind of energy.

She parks and walks at a fast clip towards her son's classroom. She enters it and grabs his blood sugar monitor...as she walks out the door she sees the class making their way back in.

His finger didn't stand a chance. She grabbed it with a swiftness that only a worried D mother could muster, and in seconds had the blood sugar confirmation in her hand.

42.

Before her son even knew what was happening she began stuffing food into his mouth. More fruit snacks. More Apple juice.

The rest of the afternoon and evening consisted of an uncovered banana after school, and uncovered donut, and then dinner where she bolused him less than half of the carbs that were consumed. The nighttime yielded more uncovered snacks and two temporary basals of zero for an hours time each.

He woke up the next morning 95 and has been fighting lows the entire day since.

----------------------------------------------------

This has happened before, and it has happened many times to my friends. When they reach out to the community and ask, 'why,' I always respond with the phrase, "Diabetes hardly ever makes sense...and trying to figure out why will only make our brains swellier."

But when one is in the thick of this mysterious conundrum, one really has to say...WHAT THE WHAT! WHY THE WHY! HEAVENS TO BETSY, SLOW THIS TRAIN DOWN!

Unsolved mysteries gather and multiply throughout our community every day. Diabetes is math. And math SHOULD make sense. But our bodies are so much more complicated than ratios and hard numbers. Our bodies are miracles, and it is blaringly obvious that as a human community we haven't figured out all the subtle nuances our bodies have to offer. If we pooled our money and hired the most talented detective alive, I'm sure most...if not all our unsolved mysteries, would stay just like that...unsolved.

There are a million and one reasons why these lows could be happening. Unfortunately, there are a million and one reasons why I'll probably never know for sure which reason it is.

In the meantime, I will SWAG my way through this episode and hope that we come out on top very soon.

Donut anyone?

And the toes have it.

It came out of nowhere. How in the world did this idea pop into his head? Did I joke with him about it? How does he even know this is a possibility? Was it his older brother that filled him in? Where in the world is Carmen Sandiego?

Basically, B came into the family room on Saturday night and declared:

"Tonight, when you check my sugar while I am sleeping...I want you to check my toes."

"Why?" My husband and I questioned in unison.

"My fingers just need a break."

And with that he whipped around and walked resolutely out of the room.

My husband and I looked at each other warily. We were sure this germ of an idea had to be planted by someone. Now don't get me wrong, I know that there are plenty people in the world that test nightly on toes. Our family was just never one of them. I think maybe we posed the possibility to J when he was younger and were met with so much resistance it became a non issue. I'm sure we abandoned the idea altogether before B was even born.

"Are we really going to check his toes?" Asks my husband

"Ummm, I think we have to." Responds me.

At 10pm that night I found B laying in the wrong direction on his full size bed, his bare foot hanging off the edge...

Above him was a hurriedly made sign that read:

So we did it. For the first time ever, we checked his toes all night long. (I do admit that I checked his finger to get an idea if the two numbers would be in the same ballpark. I suppose that is all part of a D mothers wiring. We have double check, and be sure we aren't doing anything crazy when we try something new.)

The next morning B came running into our bedroom, so excited he was going to burst.

"So???? Did you do it????"

"Do what?"

"Did you check my toes last night????"

"Yes."

"That is SO awesome!"

He started to run out of the room when I stopped him.

"Hey. Who gave you this toe idea?"

"I gave the idea to myself. I just want my fingers to get a little break. That's all."

The mother in me wonders if someone said something about the black spots that dot his fingertips.  But for now I'll try not to meddle and just do what my sweet boy asks.  He deserves to make these kinds of choices.  It is his body after all.

Reenactment: Too much information

My husband and I have a lot of conversations over the phone. He is usually gone before I wake up, and he drives around all day to see clients. I drive around all day being a mom. As a result, we are always trying to catch up with what is going on in each other's lives.

(P.S. The mySentry has been off the past two days as J asked me to wait until Friday to put the CGM on him. He is next in the lineup!)


This is our conversation that took place yesterday.

((((((Ring)))))))

Him: "Hey babe! How are you doing?"

Me: "Better, now that I'm on the way home. The kids in L's class were pretty feisty today. You?"

Him: "My clients are a little feisty today too."

Me: "Hey, what were the boys blood sugars at 2?"

Him: "Hey, yeah...what did they wake up at?"

Me: "I asked you first."

Him: "They were all good. I had to bolus B though, he was like 210."

Me: "What? He went to bed at 210. I gave him a full correction. That isn't right. I have a feeling we are going to have to up his evening basals."

Him: "But yesterday he went to bed 105 and was sixty-something at 2am."

Me: "Will this kid just develop a pattern already! L was 80 this morning. What happened?"

Him: "Happened? What "happened" is he was 170 and I gave him half a correction. That is weird."

Me: "Weird is J. He woke up higher today. But I'm pretty sure he has been waking up in range every day before this. Hey, maybe B's correction ratio is off. When he is in range he is fine, or low...but when he is high he doesn't go down. I'm brilliant!"

Him: "The other night he was 68, I gave him 5oz of orange juice and temp basaled zero for 30 minutes and he still woke up 80. I don't get it."

Me: "Wait, who are we talking about?"

Him: "J."

Me: "When did we skip to J? We were talking about...wait...who were we talking about?"

Him: "Maybe we need to start writing this stuff on the whiteboard again."

Me: "You think!??? My brain is coming out of my ears. He shouldn't have woken up that low."

Him: "Who, J or L?"

Me: "I've gotta go, I need to bang my head against a wall."

Him: "I've gotta go anyway, I'm at my next customer."

Me: "Love."

Him: "Love."

Emotional Whack-a-Mole.

It is confusing. Knowing how I'm supposed to feel. Being a caregiver of three children with Diabetes, I am expected to feel many emotions, take on many different attributes...all at one time. Is it no wonder my brain is swelly?

I'm expected to be brave: Allowing my 14 year old go away on a camp out for the weekend. Bravery. Allowing my 10 year old to attend Basketball Camp for 8 hours without me. Bravery. Allowing my 8 year old to go on an all day fieldtrip without me. Bravery. I have to keep a stiff upper lip and jump into the trust pool with both feet.

I'm expected to be strong: I want to cry all the time. But for the sake of being a semi-normal person in society, I must find the strength to believe there is a purpose in all of this. I've found it is easy to be bitter. Letting things go requires a strength that is not often recognized by society.

I'm expected to be vulnerable: I have to let myself feel for the sake of staying human. I must find times to cry to release the emotions and let life know I'm not a robot.

I'm expected to be humble: I can't believe that I know everything. I have to be willing to learn from everyone...even in the most unlikely of places.

I'm expected to be confident: I can't let the boys leave for school in the morning without exuding confidence in my decisions. They need to know I feel good about the decisions I have made, so they can enjoy their time away from me.

I'm expected to be certain: I must be certain that I entered in the numbers correctly. I must be certain that I used all of my best SWAGing abilities. I must be certain I did all I could for them to be safe.

I'm expected to be uncertain: I must always question myself. Second guess, and in turn...double check what I do.

I'm expected to be loving: I can't let my anger at the numbers bleed over to how I treat my children. They need to know that they are not at fault for my mood swings...or even some blood sugar swings for that matter.

I'm expected to be angry: Just angry enough to find the fight inside myself to keep going. The fight that says this disease won't win. I will keep my boys safe!

I'm expected to be wary: I must look at the pros and cons of everything. Educated decisions always. And when I listen to people I must always know that they are biased one way or the other...but that their opinion is based on experience, so there is always something to take away. It is up to me to find that nugget of wisdom in everything I read and hear.

I'm expected to be harsh: I have to be harsh on myself sometimes. Whether I like it or not, guilt is a motivator.

I'm expected to be forgiving: I have to forgive myself for forgetting to bolus. I must forgive the boys for forgetting to bolus. I have to know it isn't always my fault, and if it is my fault, I must understand that I am human.

I'm expected to be concerned: When that phone rings from the school and it isn't our designated time...I'm concerned. But, I also need to be concerned about how diabetes is affecting the boys. I need to be concerned about their mental well being as well as their physical well being...always.

I'm expected to be nonchalant: When someone asks how things are going, I'm expected to say, "Ahh, just fine. And you?"

I'm expected to be a fighter: My children come first. If I think they need to see the doctor, I will fight to see the doctor, even when the advice nurse thinks it isn't needed. I will fight for the rights of my children, and for their freedoms when it comes to Our Diabetic Life. I will fight every blood sugar number under 90 and above 120.

I am expected to be a schmuck: I need to take punch after punch after punch and not get up and punch life back. I need to take a few harsh blows...and understand that is the way life works.

I am expected to be rejoicing: Every moment I have with these boys is a miracle. I can't lose sight of the fact that we are blessed beyond measure to have access to insulin, blood sugar monitors, pumps and CGMs.

I am expected to be serious: Every decision I make is life saving. Every time I forget it means potential danger for my children. My choices affect my boys in an intimate, very real way. I need always to be cognoscente that diabetes is a serious...real...disease.

But regardless of all of this: I'm expected to be unaffected.

I need to feel all of this and not show it, well all the time anyway. (Or even all at ONE time.) I'm a mother and a wife first and foremost, which means keeping all of these emotions in check so I don't scare the crap out of anyone. It is almost like my emotions are one big Whack-a-Mole game. Each emotion pops its head up, and before I can get a handle on it, the next one or two pop up in its place. My mallet is in overdrive trying to keep up with all the emotions/moles on the table.

Who expects all this of me? Or what? Is it life? Is it me? Right now I can't answer that. All I know is I've been dealt this hand and I will play it.

Even though all of this is expected by the cosmos, it doesn't mean I'm not free to just be me. And if being me means schizophrenic-feeling-palooza...then so be it.

Because when I least expect it, feelings change...and that makes life more interesting.

Seriously, who wants a boring life anyway?

I choose my life any day of that week.  Emotional Whack-a-Mole and all.

CGM: Quality sleep, not quantity sleep.

(Before you read this you should know, I'm not a doctor.  I'm just a mom relating her personal experiences with the CGM. If you have any questions, call your doctor, your CDE, or contact Medtronic directly.)

I'm a fan of the CGM, but it has a lot of issues...not the least of which is it's always on, and it always has something to say.

Always on means constant information shooting our way. I don't know about you, but I have a love/hate relationship with information. On one hand, information is power. On the other hand, "SHUT UP I DON'T WANT INFORMATION ANYMORE!! MY BRAIN IS GOING TO EXPLODE!!!

We've had good runs and bad runs with the CGM, there are so many variables it is hard to distinguish which direction it will all go from the onset of a new sensor.

Before I get more in depth, I'm going to show you the technical side of the Medtronic CGM. Because you asked, and because it is always best to start from the ground up.

This is the needle that we insert the sensor with. (Don't worry, after inserted with a long rocket type device, the needle is pulled out.)

We insert the sensor into the child/lion and then we wait 20 minutes for the wire inside to "wet."  (I know that I stupidly put the CGM into the place that would be your child's belly button.  This is not accurate.  The CGM does NOT go in the belly button, lol! It will go on the side of his/her tummy or hips.)

Then we attach the actual transmitter and wait a couple hours for the CGM to ask for its first BG.

Here is a picture of what a pump site and a sensor looks like together.  We usually use some IV 3000 tape to secure the CGM.

After we enter the first BG the sensor will begin transmitting numbers to the pump. (There is no giant receiver like on the Dexcom, it is all integrated.) On the pump we will be able to see graphs, numbers and arrows indicting whether BG's are going up or down. Is this number accurate? That depends on many variables. We find that once in awhile we get a good box of sensors and numbers are very close. Other times we get a not so good box and the numbers just don't ever line up. (This is a personal theory, and I'm stickin to it.)  We have also found that the CGM doesn't like a lot of giant swings.  It finds it hard to keep up if you will, and accuracy can be spotty. I depend mostly on the directional arrows with this device. Because it is measuring values from the subcutaneous fluid, and not actual blood, the numbers will often vary.  (Directional arrows tell you if the blood sugar is trending up, or down.)  Sometimes though the stars align and everything is spot on.  When B wore it last week, this was the case. When we put it on L he bled too much and the sensor just was never spot on. I think the unpredictability of this device is the biggest frustration. If every time we got the same accuracy and results, the CGM would be our best friend. But I admit the unpredictability could be attributed to user error. I error a lot. I'm only human.

Does it hurt going in? I'm sure it does. But we put numbing cream on the boys twenty minutes before hand, and hand to heaven they do not feel the insertion. Because L was bleeding so profusely we had to put his CGM in a couple times. He looked away and honestly asked if we had done it yet...after it was in. He is our most sensitive child. One bad experience and he will not try anything again "ever!" The fact that he let us insert it again is very telling that the cream works. If you don't have access to numbing cream, (it is expensive,) I've heard others had good results with using ice to numb beforehand, and even read on facebook yesterday that someone found a product over the counter at Walmart called Dermoplast numbing spray. Worth a try.

Calibrating is an important task when using the CGM. We calibrate 3 times a day. When they wake up, when they get home from school, and at the 2am check. Calibrate means you put in the blood sugar number and answer "yes" to a question that pops up, saying you want the CGM to use this number as a new baseline. The numbers will jump off from that point, rather than the number it was on. Often the numbers can be very close...but calibration is not negotiable, as the alarms will unmercifully tell you.

One of the cool features on the Medtronic CGM include predictive alerts. If you choose to turn this option on, the pump will alarm when your child is at a certain number and the arrow is pointed down, or up. This is genius. Saved B from a couple lows...and a high too. There are a lot of alarms. You need to program the parameters in the pump just right as to not drive you or your child crazy. "Lost sensor," "BG Now," "Predicted high," "predictive low." "Low," "Sensor ending," etc...

How long does a sensor last? The FDA approves only for three days. The FDA doesn't have to wear it though and reinsert it into their child. I have heard rumors of people using it for much longer, restarting the old sensor as a new one and beating the system. I'm admitting to nothing...but it is best to ask your doctor what they think. (I'm not a doctor, btw.  Although I play one in real life...)

Do my kids "like" wearing it. No. Does it bother them. Not really. They wear it and don't complain at all. Just for some reason they resist putting it on again after it is off. Obviously freedom is a huge motivator. If your child is a light sleeper and wakes up for all the alarms, that isn't fun either. My boys don't wake up...but on bad nights, it does mess with their sleep patterns.

Which leads me to my last topic. Many people want these kind of devices so they can, "finally get some sleep already!" Does the CGM help parents sleep more? No. Does the CGM help make the sleep you do get become a more quality, deeper sleep? Yes. Having this tool as a backup puts my mind at rest. But there are nights when the alarms keep me up. Without the mySentry, I could never really hear the alarms at night. Now that I do, I'm not sleeping more...but I am sleeping better.  Some of my friends use baby monitors to hear the alarms at night.  Hey, whatever works!

Quality sleep...not quantity sleep.  That is the message I want to send out today.  The CGM can be annoying at times, but it is such a valuable tool that often the good outweighs the bad.  Every child is different...will your child tolerate it?  I can't tell you that.  Your child's diabetes my vary...and their tolerance too.

Continuing the mySentry dialog.

Thank you for your questions the other day! Today I'm going to post answers to the mySentry questions, Monday I will have a long beautiful post explaining ALL about the CGM and how it works!


I'm going to start by saying that Wed night we had to take off Ben's CGM. He was ice skating and bumped it pretty good. (In other words, he fell flat on his stomach a dozen times.) I made the call and pulled it...and TOTALLY regretted it the next morning. He went to bed with a BG of 132, he was 125 at 2:00am...and then woke up almost 400.

What the what?!!

Oh how I wished I was warned about this ahead of time. We didn't get that sugar down until almost lunch time as a result. OK...enough crying. I have the CGM on L now...onward!

Many asked about how far B could be from the receiver for us to still see the readings. Honestly, I had to do some detective work...and it looks like I didn't have a clear picture of what was going on before. (I blame it on the combination of my epic flu and my perpetually swelly brain.) Our house is newer, and only about 2000 square feet. It is a completely open floor plan, not a lot of walls. From what I could see, B could roam freely and the graphs would still show on the receiver. However, it turned out that every time he spent a minute or two near the outpost, it would send the updated data to the receiver. When he ventured to the other part of the house, the receiver would simply be searching for data. Our floor plan works in our favor, because the boys TV/Hang out room is on the other side of the wall from the outpost in his bedroom, and the bathroom is about 5 ft away. He spends a lot of time in that little triangle, and it seems that is why I was getting constant streams of information. Your house/your walls may vary. mySentry is made for nighttime monitoring, but it seems I get the added bonus of a little more wiggle room, and a little more fun.

Below are some points that answer some of the questions I received:

The receiver updates its data about every five minutes from the outpost/pump. That is why, when B ran to get some water, or a snack in the front of the house, there was no interruption in reception.

I didn't move the receiver at all. I kept it in my room. It was easily visible from my bedroom doorway. The outpost stayed put too.

The pump needs to be within 6 ft or so from the outpost, and the receiver needs to be within 50 ft of the outpost. I found it went a bit farther than that, but it depends on your walls/your house.

The mySentry works exclusively with the revel insulin pump by Medtronic. Sorry...it won't work with Animas pumps, OmniPods or Dexcom CGM's. :(

Medtronic has told me that a mySentry for multiple T1's is definitely on their radar. They can't talk about it...which believe it or not, is very encouraging. We have only one CGM that we share between the boys. We only put it on them when basals are off and I need an inside look at what is going on. Last summer we took a vacation to Disney, and no one has worn one since. I am expecting another CGM in the mail any day now, so we will have two in the house to take advantage of. The last year it has literally been, out of sight, out of mind...but it is back in the rotation again, and that makes me uber happy. They are so enlightening!

Originally I thought that one outpost/receiver was all I needed. Only one wears the CGM at a time...usually I have one boy with wonky numbers at a time, (although the stars have aligned against us on more than one occasion!) After working with the mySentry for a few days though...I came to the uncomfortable conclusion that complete peace of mind, for ME, will only come when I see three graphs in front of me. Don't get me wrong, the one I have is a dream, I don't take it for granted at all. And I'd rather see one boy, than no boys, that is for sure. I can't imagine how life changing it would be for a family with one type 1. The fates gave us three though. One day...

Regarding the high price of the mySentry system...Medtronic is actively doing what they can to ensure access to mySentry for as many people as possible, including seeking reimbursement. Thankfully, they do have a positive track record of gaining coverage for new types of diabetes technology (i.e. CGM) with the help of patients and healthcare providers advocating for these therapies. (For those interested in how to pursue coverage from their insurance company, there is a Reimbursement Tool Kit for download here: http://www.medtronicdiabetes.net/Transformer_Form_Request_Information)

They are also offering a 20 percent introductory discount, no-interest payment plans for as low as $50/month, and financial assistance for families who meet certain income requirements.

I'm sure the cost of developing, marketing and getting regulatory approval are nothing to sneeze at. It is the first of its kind. Obviously, this device isn't marketed to the millions of people that other devices are, so the cost is going to be higher than we hoped for. I'm sure that they would rather have it cheaper and more accessible for sure, but quality and quantity are huge factors. Will the price go down? I personally hope so, but I have no idea. I guess only time will tell. Medtronic will work with you though, call them or email loopblog@medtronic.com with any questions, pricing or otherwise.

Some completely random facts about the mySentry:

It has a nightlight at its base that you can turn on. I'm assuming this is for PWD who would like to check sugars without turning on a light. 

The volume of the alarms can be adjusted, and so can the brightness of the screen. I have the screen very dim, but my husband is the kind of person that hates even the tiniest bit of light emanating from anything. (He often encourages me to turn my clock away from the bed.) I don't get it, when your eyes are closed you don't SEE the light! But to him, the mySentry is like having the international space station in our bedroom.

On the mySentry you can enter the users initials and choose a cartoon like picture to represent said individual. Why are all the pictures of hipster adults? I have children. From what I can see they are marketing it to families with T1 Children...where are the children pictures? The only blond guy in there has a beard, so that is who I have representing L right now.

My only complaint , other than the obvious multiple user conundrum, is that the mySentry doesn't show IOB. That isn't a deal breaker, but man, that would be oh so nice to see.

Did I answer all your questions? Let me know if I missed anything. Monday I will have a post with everything Medtronic CGM and answer all the questions pertaining to that. I'll be sure to include pictures, how it works, what it sends its data too, if my boys like wearing it, and everything in between!

My new blog construction is almost completed...whatcha think?

mySentry: My diary of the first 3 days.

You're in the right place!  My blog is under construction.  Please bear with me!
_______________________________________________________________________________

I have so much to share and only so much brain capacity. I've been sitting here staring at the screen for five minutes and have decided to just begin typing and see where it takes me.

I want to start out saying that I fully understand how completely blessed I am to have the mySentry sitting on my bedside table at this very minute. It is the beginning of something wonderful, and I have this unshakable feeling that this is bigger than what it seems to be.

On the outside it seems so simple. A monitor that displays your child's CGM graphs, directional arrows, BG number, Reservoir units, battery life and more. But on the inside, you know...my inside...it is peace of mind, and that is such an overwhelming feeling I can't wrap my head around it.

(If you are not sure WHAT the mySentry is, please check out my post about it HERE:  And all the links attached to it!)

This is one of the pictures that was released with the the mySentry:

Yeah...I didn't look like that. Most of you know that last week I was on my deathbed with the flu of the century. Included in the perfect storm of an ear infection and a sinus infection...I also had pink eye. The word "mess" doesn't even seem to cover it. So I was in my sweats, with bright red eyes, and a headache the size of Mt. Everest the first two nights I worked with the mySentry. Needless to say, my experiences were under "real life" circumstances, not nighttime perfect hair, cute nightgown, lab conditions.

Below is my thought process throughout the weekend.

Day 1: This UPS guy probably thinks I'm a junky. Bright red eyes, not a stitch of makeup, and obviously full of some kind of medication...but yet I smiled and I smiled wide. It has arrived! IT. HAS. ARRIVED!

Wait. I need to slap a CGM on someone. Who? Who will be my lab rat? Ahhh! B! He is my most mellow...AND he had the highest A1C last week...brilliant!

After inserting the CGM, which B took like a champ, my husband and I set to our room to set up the mySentry and to synch the pump and the outpost. I checked the clock to time us...we were expecting a good half hour...it took 8 minutes from opening the box to having it ready to go. Winning!

As I laid on the bed: I'm never going to sleep again. I'm just going to stare at this pretty graph all night...I just know it. (Snore.)

Now before I go on, you should know that I didn't read the instruction booklet before we went to bed. I was sick and my eyes hurt. This was a mistake. The alarm went off ALL NIGHT LONG. I was beside myself with confusion. I would silence it and it would just go off again and again. Later I found out that you can mute the alarm by pressing the silence button TWICE. I did not know that, obviously. There was one High BG alarm that I got up and fixed and then there were a couple where it couldn't find the pump. I'm chalking night one up to a rookie mistake. Do over!

Onto Day 2:

It was the weekend, so I spent much of my day walking by my bedroom door to look at the graph. Hello, awesomesauce! I know when we used the CGM in the past the boys would be beyond annoyed with me when I would ask them to take out their pump so I could see the graph and the number. This device sets them free of that...when we are at home anyway. That night when we went to bed, I was ready. I let the lights on the graph lullaby my eyes to sleep and night 2 began.

12:00am ALARM. High BG. B has been sick and his BG was over 250. This is the first big victory. I had bolused him an hour and a half before. I wouldn't have known for a couple hours that he was going up, (rather than down,) if it weren't for that alarm. I went in and bolused him and things were quiet until 12:30.

12:30am ALARM. It is alarming that it can't find a signal. I'll just quiet it with the silence button. A few minutes later...ALARM. I will quiet it again. A few minutes later...ALARM! At this point I have two choices. I can go in there and flip B over so there is a signal again, or I can MUTE the alarm altogether until the 2am check. I choose MUTE. (I was dying, remember!)

I got up at 2am and did my rounds, where I was forced to bolus B again. I was so thankful I had an eye on the graph, I hate bolusing before the first bolus has run its course. I turned the alarm sound back on and the rest of the night was quiet. I woke up periodically on the hour because of my head cold, and in a blurry haze smiled at the CGM graph in front of me. Flat line...all was well.

DAY 3.

11:45pm. Low alarm. Tears. Feed B. This thing is magic. It would have been another TWO hours before I checked him.

3:00am Alarm that I need to calibrate the CGM. "Thanks for the reminder" >Quiet! It keeps alarming. Apparently this is non negotiable. I always calibrate at 2:00am check, but this time forgot. My mistake. I jump up and check again and calibrate and there are no other alarms the rest of the night.

This is what I woke up to the next morning:

Is it not beautiful?

Tomorrow I will post my thoughts and post answers to the questions that many of you have, incuding:

"Will I ever be able to afford this?"

"You have three boys, how is this ONE gadget, that works with only ONE child at a time, going to help you?"

"And, how do you really feel about it?"

If you have any other questions, please feel free to leave them in the comments section and I will try my very hardest to answer those too!

Believe.

She said it four times. I couldn't look her in the eye the first three, but on the fourth time I had to look to make her stop saying it.

"Meri, you are doing a great job."

Why did she keep saying it? I'm doing a pretty good job. I mean, I'm no Madam Curie or anything. I know I can do better. If I put my heart into it, I can probably improve on those A1C's...

"Meri, you are doing a great job."

As I lay in bed last night just about to surrender to sleep her words echoed in my swelly brain. I know she wanted them to sink in, I don't know how she did it, but her tone was firm yet soft at the same time. I know she knows I am hard on myself. Was she trying to ease the guilt? Or was she really speaking the truth?

Nah. I rolled over and thought of all the ways I can improve our diabetes management at home. I was deep into my list and again, almost into dreamland, when somewhere deep in my subconscious I heard it one more time:

"Meri, you are doing a great job."

And this time I listened.

And for one brief euphoric moment I let myself drink in every ounce of those words. I felt the rush of letting those words rinse away years of inadequacy and if onlys.

My yoke was lifted and for those fleeting seconds I felt like I could fly. I allowed myself to believe and the freedom my soul felt in that small moment was so overwhelming, the tears came.

I don't know if this moment was sponsored by a higher force, or just my cough medicine....but let me tell you, I'll never forget that feeling in that moment as long as I live.

Don't worry, I didn't wake up with a big head this morning. I'm back to being my own fallible self who has a ton to work on. But I have to think that there is something to this believing thing. I wonder if believing I am doing a good job will take the edge off my guilt, or if it will only make me soft and lead to me slacking on my pancreatic duties.

I'm going to take a leap of faith, and sporadically give this believing thing a shot, and then return and report to you.

Who knows...maybe it will lead to a revolution for all of us! A new day of release from all that weighs us down!

There has got to be a better way. I've let guilt control me for so long I seriously think my body is deteriorating from it all. The words our endo said were so simple, but so powerful.

"Meri, you are doing a great job." I think I will hang those words on my wall to commemorate the small instant I truly believed. Maybe it will lead to more moments like that and I will be able to slowly but surely release my guilt in small, healing doses.

It's so flipping crazy...it just might work!

onward.

I'm real people sick.

My husband is out of town today and I am on my own. So as I get ready to bring the boys to school I am VERY careful to have them all prepared diabetes wise so I don't have to bring my ashen white face and shaky aching body out of the house again.

I have to bring them to school. But I'll be darned if I'll go back to those schools today because of a simple oversight on my part.

I'm not sure what their supply boxes look like at school, so I carefully pack their backpacks to replenish them.

Just in case.

I give all three boys two extra vials of test strips.

I give all three boys apple juices for lows.

I pack all three boys cell phones and made sure every one of them was charged.

I checked all three pumps to make sure they were full of insulin and had battery life.

I checked all three pumps to make sure they all gave themselves breakfast insulin.

I check that the meter in J's backpack still has a viable battery after sitting unused for two weeks.

I double check all backpacks to make sure they put their lunches inside.

I covered it all.

Zipped them all to school, practically threw them out of the car, came home and as I walked in caught in the corner of my eye a place in the living room where the sun was hitting the couch...the perfect remedy for my chills. I grabbed a warm blanket, staggered into the living room and winced at the sight of myself in the entry mirror. Pathetic. Not pretty. That is all I have to say about that.

"Thank goodness I don't have to leave the house again until 2:00." I say to myself. "Diabetes won't be messing with me today!" Actually, that was thought up sans the exclamation mark. There was no energy left to be perky. I didn't sleep at all the night before.

As I laid down I was grateful despite myself. I thought how the boys feel nauseous from ketones and endure so much, I thought how I have acquaintances on chemotherapy who feel nauseous for days, weeks, months. I thought I won't be sick forever and that is a blessing.

And then I slept. In the warm glow of the morning sun, content and satisfied until the littles called me with their snack time numbers at 10:05.

B: 121

L: 127

My head aches and my throat feels like I swallowed a parade float, but I can rest! Joyful day!

And as I lay my head back down on my pillow, my phone says, "DING!"

That "DING!" is a text.

I reluctantly, slowly, pick up the phone and there in black and white is a text from my oldest son...who does not have diabetes:

"Hey I forgot my sax. Help please!"

Sometimes I forget I'm a mom, not just a pseudo pancreas.

Onward!

Actually today, it's more like...

onward.

Love the one you're with.

I don't want to overly simplify my feelings towards diabetes. Complicated doesn't even seem to scratch the surface. All I know is that for now...diabetes is staying put. And since that is the case, I will now endeavor to riff off the old Stephen Stills song, "If you can't have the pancreas you love honey, love the pancreas you're with."

I've spent many a year loathing diabetes and its long line of insane protocols. When my third was diagnosed I'm pretty sure I melted into a puddle of tears and bitterness for a good nine months. Looking back, those deep seeded feelings of hatred and helplessness have only brought me three things: Heartache, TMJ from clenching/grinding my teeth, and Carpal Tunnel from writing it all out on my blog. Letting go of the anger isn't easy, in fact, I don't even know if letting it ALL go is possible. But what I do know is coming to terms with this disease, ACCEPTING this disease, loving our life WITH this disease...well that yields things like a better night's sleep, and a more relaxed me.

My children and my spouse respond to my cues. If they see me worried...they are worried too. If they see me angry and upset...that angers them and upsets them too. Am I walking around the house singing praises to diabetes? Heck no! But am I trying to put it all into perspective? Yes.

I understand that everyone has different perspectives on everything. To one of us 80 is the perfect number, to another 100...to another 150. We all are individuals with minds of our own. In the spirit of New Year resolutions, I'm going to take what I know and mold it into something more beautiful. I challenge you to try too.

I know diabetes is hard.

I also know that enduring hard things molds us into more empathetic human beings.

I know that diabetes hurts.

I also know that the sensation of pure torture I feel when pricking my virgin fingers is completely different than the sensation my boys feel.

I know that diabetes is expensive.

I also know that my boys healthy futures are worth every penny of promising technology I can find.

Perspective.

Fighting diabetes...hating diabetes....it is ok. But letting those things take over is not. Hate is like acid to our body, literally and figuratively. It isn't healthy to live with perpetual sadness and helplessness.

Sometimes I just need to stand up and say, "They are ok! I am Ok! We will survive!"

Saying it out loud is liberating. Believing it is life changing.

We can love our lives with diabetes as a part of it. We can accept our lot in life and find joy in the little things even with diabetes strolling along side. Diabetes will always will be with us...which leads me back to the beginning...

Maybe our lives aren't' everything we imagined they would be. But after diagnosis it is possible to imagine a new life. Can't we love that life too? Can't that life be just as amazing as the first? It may be a bit more complicated, but with diabetes in the mix, our victories are sweeter and the good days are triumphs in themselves.

I wonder if in the end, It all comes down to loving the life you're with.

mySentry and myDisclosure.

Few things in life bring my heart to a twitter more than technology that will make life easier on the diabetes front.

Today my heart sings.

Medtronic has announced that the FDA has approved the mySentry Remote CGM Monitor.

Coupled with the Medtronic Guardian CGM, this will be my window to the my son's "inside world."

According to Medtronic's fact sheet:

• mySentry consists of a Monitor, an Outpost, and a power supply cord.


– The Monitor is intended to be placed in one room (e.g. parents’ room) where it displays continuous glucose readings and delivers customizable alerts to caregivers.


– The Outpost is plugged into the wall in another room (e.g. child’s room) with the person with diabetes and relays data received from his/her insulin pump to the Monitor.


– The power supply cord is a 5V DC cord that powers the Monitor.

• To indicate whether any action is required, mySentry’s icons on the home screen appear as green (no action needed), yellow (warning), or red (action is needed).


mySentry delivers the same audible alerts and alarms available on the Paradigm Revel pump, including:


– Predictive alerts – customizable alerts that warn of oncoming highs or lows up to 30 minutes before they occur, allowing patients to take action to prevent or reduce the severity of a high or low glucose event.


– Rate of change alerts – customizable alerts that notify patients of rapid changes in glucose levels so immediate correction can be taken after taking a confirmatory fingerstick.


– Threshold alerts – customizable alerts that notify the user that glucose has crossed a pre-set low or high target.


– Empty reservoir – notification that the pump reservoir does not contain any insulin.


No delivery – notification if insulin delivery has been interrupted.

Here is a video telling all about it.




Does it not give you perma-grin?

I am bursting at the seams to try this beauty out! Full disclosure: Medtronic will be providing our family with a pump upgrade for L, a CGM Starter Kit and a mySentry and, in exchange, I’ll be doing some guest blogging for them at The LOOP. This blog remains my thoughts and mine alone. I am not required to love it. I will be honest and let you know exactly what I think of it all.

But right now...since I am being totally honest...it is taking everything I have not to do a jig on the dining room table. No, it won't be hooked up to all three. One boy at a time. I'll choose the one that has the roughest nights and go from there.

It is an exciting jump for Diabetes kind, and methinks it is just the beginning of a new generation of connectivity from Medtronic and beyond!  This device is available to the public, but not yet covered by insurance companies. You can find out more about it HERE.

Let the adventure begin!

Our Diabetic Life in summary: Circa 2011.

I took the time yesterday to read through many of last years posts.  I have to say, I rode the roller coaster in 2011, and I rode it well.  My ups were way up there, and my downs were way down there.  I wish I could say I rode it with the intensity and excitement of a real thrill seeker, but shockaprisingly enough...I wasn't nearly as enthusiastic about it all as I should have been.  I think I've finally made my way off the coaster for now.  It only took 12 months...but the problem lies within the problem.  Diabetes isn't going anywhere.  As long as my boys are still effected, the roller coaster will rumble by soon enough and scoop me up, I am sure. 

Strolling down Memory Lane brought back a mess of feelings I've been shoving down.  I've learned a lot about myself scrolling through the pages of my life.  I've chosen a sampling...a true showing of my heart this past year. 

Take the ride with me.

January:  I started the month Finding my way as the Unicorns fled.  The very first week of 2011, L came and sat on my lap, put his two hands on either side of my cheek, looked me directly in the eye and said he wished there was a magic potion to make diabetes disappear.

"I’ve been doing my best to fake it until I make it. It helps a little. Pretending I’m not overwhelmed with my baby’s words has helped me function. But the seed remains. The helplessness remains.  It haunts me that the only reason I’m okay with all this, is because my boys are OK with all this. If they are not OK…then my swelly brain will not be contained. It will seriously blow up."

Emotional also, was the Changing of the Guard.  I ended the month giving up the alarm clock that my cousin Todd gave my husband and I for a wedding gift.  Todd passed away just a few years after my wedding from an aneurysm at the tender age of 27. 

"I had no idea how significant the gift of an alarm clock would be on my wedding day. On that day I didn’t know that there would be nights that I would be setting the alarm to go off every hour, on the hour. I didn’t know of Our Diabetic life, or the heartache and worry that was ahead of me. Our boys were just a twinkle in our eyes back then.  I’m sure Todd had no idea either.

I know our family has been given guardian angels to watch over the boys. I know it. So it leaves me to wonder, has Todd taken the post? Is the alarm clock a symbol of his steadfast duty?  I don’t know. But the thought of it makes me smile through these tears.  God bless alarm clocks...

And God bless Guardian Angels."

February:  The first real holiday of the year and I blew it.  In, Valentines day: wherein...I get knocked down, I learn the hard way that I can't be in three places at the same time.  But I also learn that on holidays, it is OK to let kids live the dream.  One moment of eating all the candy out of their bag didn't change the axis of their A1C's. 

"We get knocked down...ALL THE TIME!  But you know what...we get back up again, every time. Up. Down. Up. Down. Up. We ALWAYS get back up. And that is something..."

March:  I struggled with The Blood Sugar Check/No Pain Enigma.  How is it that my boys don't flinch when they check their sugars?  They say it doesn't hurt.  I checked my own sugar and SON OF A GUN!  It really hurt!!  The answer to the enigma was simple as it turned out.

"I asked J how he thought it was. How come it doesn't hurt? He said, “I’m awesome. That is the only answer.”

I’m going to stop wracking my brain over this one and go with that.  My boys are just awesome."

April:  I was lucky enough to attend the blogger summit given by Medtronic.  It was a humbling experience.  My advocacy heart grew three sizes that day...

"I was bone dry.

I entered the airport terminal like a weathered sponge who had sat in the sun for days. My body ached for relief.

I didn't know what to expect from the Medtronic Advocate Forum I was to attend. It was a complete unknown, and although I was scared to death of traveling alone for the first time...to see people I had only seen within the 17 inch parameters of my computer screen, I couldn't help but smirk to myself as I walked through the jetway to the airplane...

I was ready."

In April I also wrote Teeter.  Totter.  Breathe.

"I'm on a teeter totter.

Every day.

Every hour.

Where will I wake up tomorrow? Will I be up? Will I be down? Will I be bracing myself in the middle?

Only tomorrow knows.

Too bad, the teeter totter isn't as fun as it looks.

I'd rather have both feet on the ground. I see people walk by me every day with their feet on the ground. I wonder if they know how lucky they are not to ride every day? I wonder if they have any idea how much I want to walk with my feet on the ground too?

I wonder if they even know I'm on the teeter totter?"

May:  was the month of D Blog Week.  I tackled the subject of my difference-ness in Ten Things I Can't Say to the Other Mothers.

"Sometimes I don't feel like I have a lot in common with the other moms. Sometimes when I pick up the boys, I just wish I could bust out with a little diabetes lingoed epiphany and get an AMEN from the peanut gallery.  Sure, most of the time I can fake my normalcy and talk freely with the mothers in the hallway...but sadly, sometimes I'm just in another world with my thoughts."

June:  I did not blog about a lot of things in Our Disneyland/Wally World Vacation.


"You might be thinkin' I have an entire post lined up about how L broke out into a Scarlet Fever rash THREE TIMES as worse than the others, hours before our departure...

Or maybe your hoping for the play by play of the previous hour, before his rash broke out, when L had his first swimming lesson with his NOT waterproof pump attached...

Or how we had to have a new pump sent to our hotel in Disneyland...

No...uh uh...I'm not writing about that.

I'm not even going to go into how we got the special assistance pass because I brought L with me to get it, and since he looked like he had leprosy...they started writing it out before I even explained why we needed it...

Maybe you're wondering if I'm going to write about all three boys jumping into the pool...with every one of them still wearing said un-waterproof pumps...

or about the fact that THAT led to yet ANOTHER pump being UPSed to Disney for us.

I'm not going to write about that...sorry."

July:  I wrote my deepest feelings in, Diabetes is a Sailboat.  My most viewed post of the year.

"But other days the storms come in out of nowhere. The black clouds close in and the numbers ebb and flow with the powerful tide. On those days, I watch my son ride those waves and I spend the day at my scope...determined to change the color of the clouds. If his boat capsized...I don't know what I would do.

Sure...he is above water. Sure...he is surviving. But on the stormier days his sea sickness weighs so heavy on my shoulders, I'm sure I am going to run out of strength, and one day drown into despair myself.

My son has grown up on his boat, and I am in awe every day of his constant vigilance, and his nimble control of his craft. He is an able captain now. He can hoist the sail, he can watch for the storm clouds. He can batten down the hatches. He can steer that boat away from immediate danger...he FEELS the sea. His intuition is inspiring.

Three boats I have set out to sea. It does not get easier. Every boat I have released has killed me a little bit inside. My husband and I live our lives on the shore waiting for storms, hoping for sun...watching each and every wave."

I kept the wave going in July with the Four Seasons to Diabetes.

"The winter days, those are the ones that are like sticky notes glued to our memories. The rain that falls from our tear ducts...the snow that chills our hearts to our blessings. There are the storms that toss the numbers around. There are the calms that lay before the storms that can give us a false sense of security. But during this time of year, most of us know...we KNOW...that when the calm is there, then it is time to lie in wait for the storm. Every day anticipating the winds to turn everything upside down."

August:  I dared to pour out my feelings in the dead of night.  In Finding My Fight at Midnight, I shared those haunting feelings of inadequacy that seem to haunt all of us during the early hours of the morning.

"The nighttime can be so cruel.

Devoid of light, my soul anguishes in my ineptitude.

Seeing two 400's staring back at me tonight didn't help things. In fact it began a tailspin that even I am worried I won't recover from.

In this nighttime all my hope is drowned away in pools of tears in my hands. All my positivity is enveloped in the black hole of my pity.

How is it ok that I am so completely responsible for my boys well being?

How is it ok that it is all on my shoulders?

Is this a cruel joke? Will my best ever be good enough?"

September:  After a surprisingly pleasant endo visit I wrote A1C from A to Z to help me keep it all in perspective.  I'm glad I went back to read it as we have appointments coming up in less than two weeks.
 
Ask yourself, "does this number define my worth?"

Be mindful that this number shows where you were, not where you are today.

Cast out the feelings of guilt and ineptitude.

Don't give up on yourself.

September also yielded There Are Some Things You Need to Know.

"You need to know that your child's blood sugars will never be 100% perfect all the time.

You need to know that you are stronger than you think you are.

You need to know that on the hardest of days, the fact that you don't give up counts for more than you know."

October:  I let my mind go back to the simpler days in Remembering When my Middle Name was Ann.

"Today it feels like all the walls that I have built to protect me from my simpler past, are crumbling.  I feel so vulnerable. The numbness is wearing off. I was able to keep myself numb to all the numbers for so long...and now it is like the doctor has turned off the anesthesia and I can FEEL. Every number burns. Every carb count FEELS like the most important decision of my life. The weight has returned and my back aches from the guilt."

November:  I blogged every single live long day of this month.  The one nearest to my heart is Dear 18 Year Old Me.

"You have worried about school tests, friendships and acne...but those worries don't even scratch the surface of the worry that will fill your entire being when your children are born.

They will be special. They will have needs that not many people will be able to comprehend. You will question if you are strong enough. You will question if your Heavenly Father truly knows how much you can handle...because there will be days he will give you ALL you can handle. Days when the heartache will feel like it will stop you heart at any moment.

But don't fear. Your children will be worth every sleepless night. Their resilience and their courage will inspire you to be better than you thought you could be. Stronger than you ever thought you would have to be. The refiners fire will mold the lives in your home into a true family."

December:  I hold a lot of my feelings in sometimes..outside my blogger world anyway.  And once in awhile that one day comes around when you just can't dam it all up anymore.  In Yesterday it Flowed...the dam burst in typical Meri style...

"I can try my best all day long and those numbers won't always reflect that. I have so much guilt that I can't make them perfect. It is like a secret shame that I carry around with me. Inside I know I can't do better than my best. Logically I KNOW that. But emotionally...if I am honest...my best isn't the best I want it to be. I want to be best-er."

In 2012 I will endeavour to find the joy wherever and whenever I can.  Reading through my thoughts I see loud and clear that I'm letting the guilt get the best of me.  I am better than the guilt affords me.  I will journey to set myself free.  THAT is my New Year's Resolution.

I hope you'll continue to take this ride with me.  This year will be much smoother...I'm sure of it!

Positive thinking people!  POSITIVE THINKING!

Happy New Year!