After the dust settles

After the dust settles.
After the fingerpokes have become your new normal
And basal and bolus are even in your spellcheck

Find out our new normal. In the FOREST no less.
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Wishing you much love, and light, and a FULLY functioning pancreas!

The Goblin Queen, The Mer Girl, and of course, L'il Bones.

Type 1 Awareness Revolution

I Wasn't Yelling, I Was Typing Briskly

We who live near the wilderness, are always aware of the potential to encounter bears,and heaven help you, if you encounter the Mama Bear when her cubs are near. Heaven. Help. YOU. It gives pause for thought as to where the term "rip your face off" originated.

 

I hang my head in embarassment, the morning after an online tirade. Yes, it seems my Mama Bear was provoked.  I'm not using that as an excuse, but I do think it's an accountable perspective.

 

Sometimes, there comes a time in life, when there is just such a level of frustration, and emotional involvement, maternal love and obligation.... that I can become reactive.

I have a mantra that I have used for years "don't do anything impulsive. DON'T do anything impulsive" for the most part it works, but sometimes, I walk onto such a landmine, that I don't even have a split second to recognize if I'm heading towards impulsivity. The Mama Bear shackles have been RAISED and those typing fingers go aroaring.  Be grateful for this much: it's much prettier when you only have to deal with typed words. When I hit this level of intense need to protect my T1D child, my face turns red, my nostrils flair, I shake and sometimes will cry, because the level of energy is just TOO INTENSE.

But you don't know that if you haven't walked this path of ours.

 

Wanna know what set me off?

 

Public school lunch times. More specifically dietary restrictions during public school lunch times. More specifically: peanuts.

 

I'm going to do my very best not cannonball jumping right back into the intensity. Truthfully, I can already feel my arms tingling. It's coming. I breathe deeply, try to centre myself so I can continue.

 

Rowan had one blissful year in school before being diagnosed with Type 1 Diabetes. One blissful year: Kindergarten. Free of fingerpokes, and limited grams of carbohydrates per serving. One blissful year of being "normal" (which, we ALL know.... "normal" is simply a bolus setting on an insulin pump).

 

I think I have both perspectives on this nut issue. Well, in theory I think I do. I know the frustration of not being able to send my child's favourite lunch to the school. 

 

But I also know the frustration of having a seemingly healthy kid be struck down with a life long condition. A condition that has such unrelenting maintenance to it; a condition SO MISUNDERSTOOD.  That not being able to send peanut butter has just been launched via emotional grenade attack, completely out of my mind. Because I look into the eyes of my child. The child I just want to keep safe. That I would do ANYTHING to help keep safe.  To try and make her happy. To try and teach her to find the bright side.

 

It is an experience unlike anything you have ever experienced as a parent, when you have to say to your beloved "I'm sorry.... you can't eat that right now" as their friends chow down glutonously... drooling. It is unbearable for a little kid to watch all of their friends have cupcakes to celebrate so and so's birthday, but they aren't able to eat it with their friends, for whatever diebetic reason at the time. Don't believe me? Please try it! Please take several trays of donuts and your child to the local playground. Start handing them out. Now look at your child and deal with the emotional meltdown because they've been left out. Been made special.

Damn it. I'm going off onto a mini-rant.  Reassess Krystin, reassess!

It has been said "it takes a village to raise a child" which is FANTASTIC if you have a willing village.  Some villagers get dragged into this kicking and screaming. Some are most gracious, compassionate and helpful. But there seems to be an awful lot of "it's not my kid, so it's not my problem" in this day and age.  Trust me, the flip side to THAT is a little kid and/or family wondering "but don't I matter to you?"

I'm not posting this for pity. I am posting this in an effort to challenge your paradigm.  You don't know what you've got until it's gone. That is most certainly the case with the insulin producing cells of your pancreas. They leave. You know the gratitude, the relative ease of living, it's gone.

In closing.... I ask this of you.  If you encounter a child in the school system with a dietary restriction. Please don't trivalize it as 'a lifestyle preference'.  There is nothing preferential about this lifestyle we lead. Please be grateful for the fully functioning organs of your loved ones, please try to be compassionate, and please..... if you are able to help by honouring the limitations, please do so.

There is a little person in that school looking to you to see if she MATTERS.

Does she? Because she's watching.

Wishing you and yours fully functional pancreases, and happy blood glucose readings.

With much love and light,

Krystin and her LadyBugs.

Waking Up The Senses

Managing Rowan's Type 1 Diabetes (she's 8, dx age 6) is such a multi-sensory experience.  The sounds, the smells, the feel of all the equipment in our hands.   It is like a poem within an experience too often overlooked or rushed through, rarely savoured.

The feel of pulling apart a hygenically sealed package containing her insulin resevoir. The resistance of puncturing the squishy top of the insulin vial. The pressure when drawing the insulin out from the vial into this tiny container.  Pulling the pump tubing taut in an effort to straighten it from it's curled position of hibernation.

The sound of the lid of her test strips container 'clicking' back into place. The sound of her lancer cocking back before puncturing her finger. The beep of her glucometer as she slides her test strip into test the freshly drawn blood.  Her heavy sigh when her number is higher than it should be.  Her near glee if she's low and gets to treat it with a sugary candy.

The crinkle of the cereal bag. The beeps of the scale as she punches in the right code for her cereal and zeroes out the weight of the bowl. The endearing bellow of the carbohydrate count and notifying me of how much insulin she's being given by her insulin pump.

"Moooooooooooooooooooooom, 68 grams of carb's, 1.5 units of insulin, dual wave bolus over 30 min"

But my favourite: the scent. 

Unless you have had experience in a diabetic household, you likely aren't familiar with the smell of insulin.  Much like the scent of gasoline, the scent itself is an experience.  Insulin smells mechanical, nearly metallic.  That's the only way I can describe it.  The smell will linger on your hands long after washing it off.  If you spill it in a room, you'll likely drive your animal friends nuts.  But that smell.... that linger.... that to me, is one more reminder to be grateful.

So completely, absolutely, utterly BEYOND grateful.

A Letter To My Bones

My sweet precious L'il Bones:

You did something tonight, that I was beginning to doubt you would do before you were 39.  You did your own site change! I'm rather certain that this pivotal moment will be locked in your memory, and I'm sadly confident you and I will have rather different versions of the event. It's my hope that one day, you'll read this entry, and you'll have greater understanding of the big picture.

I know that none of this has been easy on you.  It's been huge changes for a little person. But I'd like to think that you are learning at a early age, exactly how strong you are, what all you are capable of overcoming, and what you are able to rise up to.

I'm sorry.  I know you didn't want to do the site change. I'm sorry.

One of my biggest worries, as an independent parent and your sole diabetic caretaker, is that you have the means and confidence to manage type 1 diabetes should anything ever unfortunately happen to me.  I'd hate to think of you mourning the loss of Mama, and at the same time, having to learn how to take care of yourself, or being at the mercy of someone who doesn't understand the way you're used to it being done.

Did you know that when Mother Birds are teaching their Baby Birds to fly, sooner or later, they have to push the baby out of the nest? Not to be mean, or because they're mad at their Baby Birds, but because the "unknown" is so overwhelming. So frightening.

Tonight, you got yourself all worked up before we did this.  Heck, you being all worked up was part of why this happened. 

I love you, but sometimes your behaviours aren't fair.  At the end of the day, this isn't my diabetes. There is an expression "don't bite the hand that feeds you".  I think by the time comes you read this, you'll understand the metaphor, or maybe after just tonight, you understand.

I want you to grow up remembering, that if you work yourself all up over the unknown, you only intensify the misery.  Take a deep breath, and JUMP into the new.  Yes. It will be scary.  Yes. It will be exhilerating. Yes. You will wish you didn't have to.  But when you're swimming in that "new" you will be BEYOND proud of yourself for your bravery and courage.  If you remember nothing more, this advice is in the top 5 I would like you to remember. It's that important.  Breathe, trust, and jump into the new. Just remember to breathe before jumping, while jumping, and while landing. Breathing's important, it'll get you through everything.

I realized that I pushed you out of the nest tonight.  I realized that you very much got pushed out of the nest the day you had to inject yourself at family camp.  Please know that pushing you out of the nest is probably as hard as being pushed. Right now, you're curled up in a blanket, watching TV with your sister, meanwhile I, "the pusher" am sitting at a computer crying.  I feel mean, and I hope you don't see me that way.  I hope one day you'll understand.  I just want you to fly.

Much love,
Mama

Explaning "Sites"

November is diabetes awareness month, and I always love it when people are brave enough to ask me questions about Diabetes.  There is no question too silly. Quite likely, no question I won't answer!

As of recently, I've had some inquiries about her insulin pump site.  I've had the chance to take some pictures to try and explain this process to the best of my ability.  Of course, if you have any questions that I didn't address, please don't hesitate to comment.

The picture below is Medtronic Mio infusion set.  There are, to the best of my knowledge, three main providers of insulin pumps: Medtronic, Animas, and Omnipod.  Omnipod is a funky little pump that has absolutely NO tubing (you'll see what I mean in a moment, bear with me).  Rowan (8) uses a Medtronic pump, and has since December 3/11

 

We affectionately refer to changing an insulin site as "harpooning" and will herein refer to it as such, for lack of a better term.

 

 

The lid of the Mio opens up (just like one of those bubble toy dispensers from the coin machine) the tubing is wrapped around inside. We stretch it out in an effort to straighten it and prevent any kinks.  Kinks can prevent the delivery of insulin, which really isn't good.

 



There is a needle inside, that is protected with a tiny blue sheath.  Once that sheath is removed, you will see that there is a tiny cannula around the outside of the needle.  As shown below. Or tried to show as below.

The cannula is difficult to see, because it is transparent. But if you look closely at the needle, the bottom half is kind of shiny. That is the cannula around it.  We draw back the inside part (white part on the lower half of the pink piece) and it 'cocks it' kind of like a gun. Don't ask me. I've never even handled a gun. But it's the only description I can think of. Wait! A sling shot.  Yes. I pull it back into place like a slingshot. Excellent! It is that exact force when it is released, that 'harpoons' the cannula into Rowan. 

Insulin pump sites can be worn on arms, thighs, abdomen, or high buttock.  Rowan hasn't been daring enough to attempt arm or thigh (one day! One day!) So we alternate, tummy, tummy, bum, bum.

She gets 'harpooned' once every three days.  As the cannula is inserted into her flesh, scar tissue will begin to form around it, thereby preventing the absorbtion of insulin.  Hence the rotating every three days.  If scar tissue is present, that spot won't be as receptive to absorbing insulin.  Rotate, rotate, rotate!  You might wonder how we are able to tell where she hasn't been harpooned recently. Basically: her buttocks and abdomen are covered in tiny healing polka dots from the site, so it's actually not that difficult to find a fresh fleshy spot.

Around the cannula is a patch of adhesive. This is how the site sticks to the body.  Unfortunately, sometimes they lose their adhesive before it's time to change sites, which means a spontaneous site change is necessary.

The insulin pump delivers insulin in two different forms.  Basal, and bolus.  Basal is the minute "background" amount that she receives every hour.  Bolus is the lump amount she receives all at once to cover carbohydrates consumed.  Because the pump delivers a basal amount, if the pump is not connected correctly, the diabetic is not receiving ANY insulin. This is NOT good, and it is only a matter of time until complications begin.  A pumper that has been disconnected can be experiencing difficulties within an hour.  Things go downhill much faster with a pump, but for our family, the benefits outweigh the possible complications. We just work to be extra vigilant.

The tubing plugs into a resevoir that is filled with insulin.  The resevoir is not part of the Mio infusion set. It's an extra piece that is purchased seperately.  Diabetes is a very expensive disease. I strongly suggest avoiding it to the best of your abilities.  Yes.... that's my dry humor. Hardy har har.

The resevoir plugs into the side of the pump, and the whole system works together to deliver the insulin.

 

This is Rowan's freshly harpooned tummy.  All that you've seen described above is the underside of what you're seeing now.  The adhesive is pressed firmly against her tummy.  The pink part actually can unplug from the site. Her pump is not waterproof, so it is unplugged for showers, swimming, or any other activity that might get the pump wet or fry it.  You are looking at a $7000 piece of machinery, so we VERY much avoid getting it wet. If something were to happen to it, we would not be able to replace it. So we guard it protectively!

Now if you look at the bottom left hand corner of her pump, you can see the tip of the resevoir poking out. You'll know you're looking at it, because of the transparent tubing attached to it. That tubing winds around and plugs into her site. 

If you are a pumper, and looking at this, you'll likely call me out about the message that is on the pump screen.  While we had some 'technical difficulties' it was resolved. Strangely enough, it was only by looking closely at this picture, that I realized things had gone awry!

 

Visit my FB to view a video of an actual site change

 

I apologize for the shaky quality of the video. It was shot by my eleven year old daughter. As an "independent parent" I only have TWO hands, and harpooning is a two handed process. This gives some insight as to what she goes through every three days.  She does NOT like this process, and everytime it is the same. "I'm not ready! I'm not ready! Don't do it until I'm ready and I tell you. You'll know I'm ready because I'll take a deep breath".... two minutes later "Alright Rowan, you ready?" "NO!".... two minutes later "Alright Rowan, you ready?".... "NO!"...."Okay, take a deep breath, here we go!" at which point she gasps like her life depends on it, and I harpoon her. All the while muttering my site change mantra inside my head "please be good. Please be good. Please be good"

I utter that mantra because sometimes, unfortunately, during the harpooning process, the cannula gets bent by the inserting needle.  If the cannula is bent, the insulin cannot be delivered. No good comes from that, as I hope you've learned from this post.

 

Now some might ask: If she protests so much, WHY do you do this to her over and over again? My answer is simple, yet long winded.

 

Every day, twice a day, for fourteen months, I had to inject her.  The battle to inject was far worse than her pleas of "I'm not ready" You name the out of reach hiding spot, she found it. All the while howling about how she hates needles, hates her new life. That I should have just let her die in the hospital instead of bringing her home to live like this.  Oh the heartbreaking drama of a young girl.

I used to wake up in the morning, and within 45 seconds of waking, be having a full scale anxiety attack BECAUSE of the injecting battle that awaited me.  Heck, in the early days after diagnosis, I'd cry myself to sleep, knowing EXACTLY what awaited me upon waking.

So while this isn't the easiest of processes for her, the benefits greatly outweight the stress.

 

I hope this answers some of your insulin pump questions, and like I said, if you have any questions, please, don't hesitate to comment and let me know.  Answering questions is a key part to diabetes awareness, and.... after all, November IS diabetes awareness month.  Though you might not know it.  We're the ugly duckling hiding behind "Movember"

Wishing you and yours happy numbers, and healthy and productive pancreases!



 

Battle Of The Juice

8pm last night, my eleven year old, gorgeous blue-eyed daughter Trinity is in the kitchen fixing herself a light snack before bed.  Innocently, she pulls a juice box out from the fridge, unwraps the straw and pokes it in.

I quickly scan the contents of the refrigerator.  There is two juice boxes total.

"Rowan" I call out to the other room "Do you have a juice box in your kit?"

A moment of pause.

"No, I used it already"

8pm and two juice boxes.  I quickly start factoring in the possibility of night time hypoglycemia (low blood sugars) or her waking up low.

"You can't drink that. You need to put it back" there was probably a level of snap in my voice. I apologized then, and I apologize again now.  I'm sorry for being snippy Trinity.

"But I already opened it"

"I don't care, put it back in the fridge"

"But why?"

Really..... we're going over THIS?  Really???

Because there isn't enough, and I need it just in case.

"Well *I'm* not a diabetes master mind. How was *I* to know???"  she spews my direction with a tone of injustice.  I suspect she's extra testy because, in her defense, it was the last of the orange juice boxes. A pack I had bought specifically with Trinity in mind.  She's an orange juice girl.  Rowan doesn't care for orange juice. She's more a grape juice fiend.

I felt, and came across as, such a bitch.  A cold hearted woman who wouldn't share a juice box with her eleven year old.  Might seem rather petty.

But in our house, juice boxes are life saving medicine.

I am the mother, than when at a picnic, and Rowan sips a juice box, if a friend asks for one, I have to politely decline their request, and explain that it's Rowan's "medicine".  That's a hard concept for a child outside the diabetic ring of fire to wrap their minds around. I'm grateful, at the very least, that I'm usually dealing with five year olds and up.  Not having to try to rationalize it to a two year old.  Thank heavens for small favours!

To some, it's just juice.  Around here, it's gold.  Life saving serum to help keep my youngest, brunette, brown eyed bodacious, slight framed L'il Bones alive.  So when the inventory of 'liquid gold' starts running low, I, in turn, become as defensive and protective of that juice. Much like a buck-eyed, toothless, tabacca-spittin' gold miner guards his loot.  You DON'T mess with the gold miner.  Or the bulging eyed, exhausted, slightly hormonal, nicotine craving Mama bear of a type 1 diabetic.  Because, I *WILL* eat you alive to defend the last juice box.

Just ask my eleven year old.

Once again, my apologies Trinity for my level of intensity. I love you both so much, and I wish I could make this world a more balanced and equitable place for the two of you. But sadly, life isn't fair.  No amount of standing on my head or juggling plates upon sticks with my toes will make it such.  It is what it is.  For you AND Rowan.  All I can do is LOVE YOU EQUALLY.  I do, and I will, until my last breath.