Sunday, May 17, 2015

All Stocked up on crazy here, thankyouverymuch




Sunday - Crazy Stories (wildcard)

 Diabetes can sure bring some crazy moments. So tell us your Top 3 craziest D related stories! If you can't think of three, don't worry. We're just as happy with one or two . . . .

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The post below is one of my weirdest "d-mistakes" stories.  Looking back, it makes me chuckle...

It was a lovely Thanksgiving afternoon.  Turkey et al had been consumed, insulin bolused, and the kiddos were outside playing a rousing game of soccer.

The adults were still gathered around the table, digesting our meal when it happened; the long, continuous screech of death which tells you diabetes has decided to screw with your holiday.

As I jumped to my feet, I realized that it was not possible for me to be hearing Elise's pod, since she was outside.  Either I had developed the hearing of an owl or the PDM was the source.  Sure enough; PDM error.  Still sucky, just not as sucky as a pod failure.

For you non-podders (or podders who have never encountered this), when you get a PDM error, the pod will continue to deliver the basal, even though the PDM (once reset) won't recognize the pod that is being worn.  This was great because we were a ways off from dessert, and I didn't want to interupt Elise's soccer game.

I reset the PDM, and when Elise came inside, we changed her pod.  As per our usual routine, she left the old pod on until we could put baby oil on the adhesive to get it off.

The rest of the evening, Elise hovered on the low side.  I ran negative temp basals, bolused for half of more pie, and still she remained stayed low-ish (80s - according to the CGM).

When we got home, I turned off her basal entirely; since we had been free-basing smarties the whole ride home.  I think her basal stayed off for almost three hours.  She came up to about 100.  I was worried about ketones developing (since she wasn't receiving any insulin), so I turned on her basal at 50%.  She went low again.

That night, Fred and I were up checking her almost every 30 minutes.  We alternated between turning off/down her basal and giving her carbs. I was flummoxed... how could she be receiving no insulin, eating smarties and her BG still go DOWN?

Any pod people care to chime in here?

Finally at 6:00 am, I sat bolt upright in bed after just laying down from a BG check and subsequent smartie-feeding.  I yelled, "THE OLD POD!  IT'S THE OLD POD!  IT'S STILL DELIVERING BASAL INSULIN!!!"  I ran to Elise's room, turned the basal off completely on the new pod and gave Elise 12g of yogurt.  Finally, she rose above 100 and stayed there.

Remember this picture from this post a few days ago?  That was this night.


The funny thing is, right before I woke up to check her at 6:00 am, I had a dream that Fred and I were driving down a highway and passed two factories right next to each other.  The factories were somewhat dome-like and both had chimneys with smoke rising from each one.  I remarked to Fred how strange it was to see smoke from both chimneys, because usually there was smoke from one or the other; not both at the same time.

Looks like Lenny and Harold are alive and well. Maybe next time guys, help me figure out my mistake a little earlier, mmmkay?

Saturday, May 16, 2015

DBlog Week: Playing favourites




Saturday - Favourites and Motivations 

If you have been blogging for a while, what is your favorite sentence or blogpost that you have ever written? Is it diabetes related or just life related? If you are a new blogger and don't have a favorite yet, tell us what motivated you to start sharing your story by writing a blog?

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This was a hard one.  I mean, the question may well have been, "which child is your favourite?"  Okay, maybe a little dramatic, but some of these posts (almost 900 as of today) were the result of a lot of blood, sweat, tears and pain.  

But if I have to go there, then I'm going to break the rules a little and pick a series of posts.  And that would be my Lord of the Rings series.  Why? 

Because they were all written while crying.  Meaning, they all really meant something to me.

A few nights ago I settled in to watch some TV and saw they were showing all the LOTR movies.  I checked in from time to time, but made sure to watch the scene from Return of the King, which inspired the post below.  

And as the scene played out before me, I found myself in tears. I haven't cried about diabetes in awhile, but it led to almost full-on sobbing.  Because it's true.  All of it. As much as it was when I wrote it almost four years ago.

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Her Sam

If you've been reading this blog for awhile, then you know I love Lord of the Rings. Although Frodo is the protagonist and main hero of the story, he's not my favourite. Legolas and Aragon provided some great eye candy in the movie, but they didn't take top spot either. And while I can totally identify with the craziness of the Gollum/Smeagol thing, he/they aren't it either. 

The one character that gives me the warm fuzzies is Sam. Sweet, lovable, Samwise Gamgee. Frodo's gardener-turned-sidekick for the epic journey to destroy the ring.

As Frodo became weak under the burden of the Ring, Sam carried most of the luggage, cooked, kept watch at night, and rationed the food so he and Frodo had enough for the journey. He protected and took care of Frodo as they moved through the dangerous lands toward Mordor.

At one point, on Mount Doom, Frodo collapses. Exhausted, he can go no further. Sam, while exhausted himself, tries to rally Frodo. He asks him to remember all the wonderful things about the Shire; the orchards that will soon be in blossom. The birds nesting in the hazel thicket. Summer barley and the eating of strawberries with cream.

Frodo cannot. He is done. Seeing this Sam yells, "Come on, Mr. Frodo. I can't carry it (the ring) for you... but I can carry you!" and slings Frodo over his shoulder to carry him to the end of his task.

That scene? Chills. Every time.

We all need a Samwise Gamgee in our lives. For the times when we collapse under the burden of our ring and have nothing left to give.

And I hope to be this for Elise as she grows up and the ring becomes her burden to bear. Right now it is mine. And that's okay. I would carry it forever if I could.

But I know that when she grows older, there will be days where she feels like Frodo on Mount Doom. So weary and tired. The responsibility and never-endingness of the disease will take its toll on her.


And I pray I can be there for her; unable to bear the burden for her, but more than capable of carrying her when she can't walk. For as long as I am able, I will travel this road with her, making the epic journey and lifting her up when she needs it. I will remind her about the orchids, and the strawberries with cream.

I will be her Sam... for as long as she needs me.



Friday, May 15, 2015

DBlog Week: Food! Glorious Food!




Friday - Food on Friday

Write a post documenting what you eat in a day! Feel free to add links to recommended recipes/shops/whatever. Make it an ideal day or a come-as-you-are day – no judgments either way.

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Even though Elise was diagnosed young, food has always been the easy part for us.  She always eats everything on her plate, and she's a creature of habit when it comes to her meals.  For example:

Breakfast:

Banana
Cinnamon toast
Probiotic drink

Total carbs: 45g

Yes... she eats this pretty much every morning.

The best part is I can wake up at 6:00 am and pre-bolus her while she's still asleep.  This way we avoid the nasty breakfast spike and top out around 180 before gently floating back into range (in a perfect world where everything goes according to plan).

Lunch:

Sandwich
Crackers
Probiotic drink (she loves them)
Grapes
Chocolate chip cookie

Total carbs: 65g

Snack after school:

Popcorn (usually not even enough to bolus her for)

Dinner:

For this I asked Elise what her favourite dinner I make was.  After rattling off a few, she said, "but your chicken nuggets are THE BEST!"

They really are.  Better than CFA, in my opinion.  Alas, I cannot take credit for them.  You can find the recipe here at Our Best Bites. I am not affiliated with them in any way, but honestly, everything I have made from their site is pure awesomeness.

And you're into such things... a carb factor of .10 works quite nicely for these.

Thursday, May 14, 2015

DBlog Week: Nothing Permanent except Change



Thursday - Changes 

Today let's talk about changes, in one of two ways. Either tell us what you'd most like to see change about diabetes, in any way. This can be management tools, devices, medications, people's perceptions, your own feelings – anything at all that you feel could use changing. OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes. Were they expected or did they surprise you?
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I just wrote about it in another post, but the way technology has changed the way we care for Elise is mind-bottling (Blades of Glory, anyone?).


We went from using NPH/diluted Humalog and checking her BG almost every two hours, to being able to micro-bolus with her pump and watching her BG from miles away using Nightscout. In only 7 years.

Totally mind bottling.

Of course there is always room for improvement.  We love our Omnipod, but the PDM is a little pre-historic.  If we can put a man on the moon, why can't we design the PDM to be a little more smart phone-ish in looks?

Speaking of smart phones and PDMs, one of the major downfall of the pod is that if you lose/leave behind/have a fatal PDM error, you are SOL.  Wouldn't be awesome if there was an app you could use in these instances?  Bolus Elise from my phone?  Yes please!

(Yes, I am aware I have a total delusional attitude about these things and have no idea about the inner workings, but dream with me here, mmmmm'kay?)

And further speaking of all things smart, I wish pumps in general were a little more brainy.  For example, we used to use the extended bolus every day for Elise at dinner.  It's just how her body works... we can never give all the insulin up front, no matter what she eats.

But we discovered that the extended bolus function doesn't work for us. Because she needs about 50% up front, a small amount during hours 1 and 2, and the remaining by hour 3.

What we end up doing is just manually bolusing her at certain times after dinner.  The result?  Exhausting.  Because if I get caught up in other stuff and forget, her BG skyrockets.

I'd love to see a pump where you can tailor the extended bolus to your needs.

I'd just like to add that we've messed with ratios and basals and that just makes it worse.  Elise has been this way forever when it comes to dinnertime.  The only thing that ever worked was diluted insulin.

Actually, just give me the Bionic Pancreas please.

To wrap it all up into a neat little package, I am amazed by how far we've come. And waiting with eager anticipation at just where we might go.

Wednesday, May 13, 2015

DBlog Week: Hoarders; Diabetes Edition





Wednesday - Clean it out

Yesterday we kept stuff in, so today let's clear stuff out. What is in your diabetic closet that needs to be cleaned out? This can be an actual physical belonging, or it can be something you're mentally or emotionally hanging on to. Why are you keeping it and why do you need to get rid of it?

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My name is Joanne and I hoard diabetes supplies.  The above picture is our diabetes cupboard and it houses all the necessary supplies to keep Elise alive and living life as normally as possible. 

If you look up at the top left-hand shelf, that's where all the meters are.  Not spare meters, mind you, but meters we somehow have collected but don't use because we don't have the strips for them. I just counted and there are 6, brand new, never used meters.

And yet I still keep them.  Why?  I don't know.  Mostly because I don't know what to do with them.  It seems to be a waste to throw them away.  But I don't know anyone who needs them.  Or what else to do with them.

So there they sit.  Sad.  Alone. Unused.

Anyone need a meter?

Tuesday, May 12, 2015

DBlog Week: KISS



Tuesday - Keep it to Yourself

Many of us share lots of aspects of our diabetes lives online for the world to see. What are some of the aspects of diabetes that you choose to keep private from the internet? Or from your family and friends? Why is it important to keep it to yourself?

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When people used to ask me questions like, "Is Elise's diabetes under control?", I used to launch into long, descriptive diatribes using lots of examples why that is the dumbest question in the history of ever.

Then I noticed people stopped taking to me.

Okay, it wasn't as extreme as that, but I did observe the glazing over of eyes when I tried to explain why diabetes can be such a pain in the ass... sometimes literally.

These days I use the KISS principal... Keep It Simple, Stupid.  While I appreciate them taking the time to ask, they won't get it.  

They can't.  

Even if I were to use lots of diagrams, flow charts and maybe a live reenactment, unless you live it... you don't get it.

So I usually respond with, "It's as under control as type 1 can be", and leave it at that.

I save my special brand of crazy for people who tell me they can cure my daughter with a cinnamon and okra smoothie.

Monday, May 11, 2015

DBlog Week: Can I?


Monday - I Can

In the UK, there was a diabetes blog theme of "I can...” that participants found wonderfully empowering. So lets kick things off this year by looking at the positive side of our lives with diabetes. What have you or your loved one accomplished, despite having diabetes, that you weren't sure you could? Or what have you done that you've been particularly proud of? Or what good thing has diabetes brought into your life?

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Positive side?  If you had asked me about 7 years ago if there was a positive side to diabetes I would have laughed in your face.  Then maybe kicked you in the groin for being so insulting.  

Heck, even 4 or 5 years ago it was still a battle.

But these days my baby with type 1 is not a baby anymore.  Not even a toddler.  And with her growing up, we have "grown into" (for lack of a better word) her diabetes.  Is it still hard?  Some days, yes.  So. Very. Yes.

But it is better.  Or maybe we're better.  The technology is definitely better.  And when you put all these things together, we are doing things that I never thought possible back on September 6, 2008.

We travelled... first a short hop to Kansas City, but soon after to Canada.  Portugal.  San Francisco.  Orlando x 2.



We added to our family.  Two more times.




She went to preschool, where nobody had any experience with type 1.  And rocked it.




She's done skating lessons, swimming lessons, dance, soccer, gymnastics, and hockey.



Then came elementary school, and riding the school bus. Class parties and field trips.  With the help of Nightscout and an awesome school nurse, we totally conquered Field Day this year:




We have walked, raised money, raised awareness, and educated.  And  much, much more.

These days when I think back to that scared Mom, sitting in a dreary hospital room clutching her baby tight in her arms, I can close my eyes and remember exactly what was running through her mind; "Can I do this?  I don't think I can."

Almost 7 years later, the answer is: Absolutely, I Can.

And so can this girl.

Wednesday, May 6, 2015

DBlog week!

I have been trying like mad to carve out some time in my day to blog, but it just doesn't happen.  I miss my free therapy, so I was excited to see that Karen is bringing back DBlog week!

If you haven't heard about it before, it's something that she started 6 years ago.  For seven days there will be a topic to write about on each day.  To read more about DBlog week or to sign up, go here. You can read about the topics here, and see who is participating here.

I am hoping to get in my writing groove again, as well as catch up with some old friends and make new ones... hope you can join me!


Monday, May 4, 2015

Sports and why #wearenotwaiting


You can't see it, but Elise is in that picture above, playing soccer.  Actually, she's in goal.  She did pretty well and caused this former goal keeper a bit of stress during the game.  But not because of diabetes.

I haven't blogged about it, but we have been Nightscouting for close to a year.  I am so amazed to look back over the almost 7 years (did I just type 7 years???) since  Elise was diagnosed and see how far technology has come.  Just 3 years ago a BG meter that would transmit her numbers to a website was revolutionary for us!

Everything IS awesome... thanks Nightscout!

When Elise plays soccer, her rig (the Nightscout setup) is in her soccer bag across the field from me.  And I hold onto the extra dex.  Between the two devices, she almost never goes out of range.  Soccer on this day was at 9:00 am.  I figured we didn't have to worry about lows because it was right after breakfast, but when she topped out at 180 before the game, I was a bit worried.

Maybe it was the adrenaline from playing a new position.  Or maybe it was because she was only running for half the game, but periodic glances at my wrist showed me she was steady at 150 through most of the game.



Elise is now getting to the age where most parents just drop their kids off at practice and then take off. This obviously doesn't work for us.  I actually enjoy watching her as she practices... it brings back happy memories from my childhood. But on the day the picture above was taken, it was about 38 degrees out (4 degrees Celsius).  And I was recovering from the flu.  In short, I felt like death, but thanks to Nightscout, I was able to monitor Elise from the warmth of my car.


A new one for us this winter was hockey.  My kids had been bugging me to try hockey, which makes my Canadian heart sing, but is not something you just sign up for... It's quite an investment and you need to make sure they'll like it.  The spawn-of-the-devil local pro team offers a free 4-week hockey camp, so I signed my two older ones up.  Believe me... my Canuck loving heart was conflicted and seeing her wear that logo on her chest makes me want to puke a little.

Hockey was a beating BG wise, partly because it was right after her soccer games, but at the end of the 4 weeks, I think I had it figured out pretty well. 

One thing I'm excited about is letting her have a little more freedom at Friends For Life.  See this back pack?


Besides having a super cute donut pattern, is the perfect size to house her rig.  She will be able to do a little more of her own thing this year.  Plus when we're in our sessions, we can monitor her while she's in her class (not that we ever worry at FFL... that's why we love it!)

I am so indebted to the people of Nightscout for all the work they have done on this project.  I could give you more examples of how it has changed our lives, but this post is long enough.  If you're curious and want to know more, check out the CGM in the Cloud FB page here.

Thankful that #wearenotwaiting.