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!