The Storyteller

DBlog week - Day 5
More than Diabetes- Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with. Share an interest, hobby, passion, something that is YOU. If you want to explore how it relates to or helps with diabetes you can. Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes!

This is not my story.  For now, I am merely the storyteller.  It is my hope that one day Elise will want to take my place, and continue what I started.  If she doesn't, no big deal.  What I do love, is that she is already following in my footsteps of being a storyteller.

My girl is a published author.

At the age of 9 (she was 8 when she wrote it), Elise published her first book; called The Mouse Who Ate the Moon.  It's a children's story about a hungry mouse and what happens to the moon during a lunar eclipse.

So far, she has done numerous readings at schools and libraries. She has also had one book signing, with two more scheduled.

There is so much more to this girl than diabetes.  She is a big sister.  Soccer player. Voracious reader. Best friend. Daughter. Lover of all things Star Wars and Harry Potter. Singer. Loves to sew. On her way to being trilingual.

And now, published author. In TWO languages (English and Portuguese).

If you're interested, you can buy Elise's book here. If you're local, we have a book signing on June 3rd, at 1:00 pm.  Just leave a comment and I can give you the details.

Love this girl... she inspires me so.

I am Crazy Slowly Going

DBlog week - Day 4
What brings me down- Today let’s revisit a prompt from 2014 - May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

***I'm phoning it in today, and using my post from 2014. With a few changes.***

I often joke that when I gave birth to my kids, most of my brain must of come out too, because I think I've become dumber with each child I've birthed.

Add diabetes to the mix and it's amazing that I remember to dress myself before I walk out the door.  Mentally, I am exhausted.

Over the past five years, diabetes has become increasingly frustrating.  Elise doesn't follow trends.  She requires very little insulin most days her TDD is about 15 units (she usually eats 50-100g per meal).  She goes through periods where we don't bolus her for meals.  Or only bolus by half.  We've never been able to bolus her fully for her dinner.  We do it manually over a period of five hours.  

And then there are the times she's high no matter how much insulin we dump into her.

Mentally, it's exhausting.  It's like an enigma, wrapped in a paradox, stuck inside a conundrum.

Or something.

I don't really have any sage advice on how to deal.  My method is to rant and rage (to my husband, a friend, my blog, or an empty room).

I play soccer.  Like, a lot of soccer.  Some weeks I have 4 games.  Win or lose, soccer makes me smile, and takes me back to my younger days... when I was actually good at something.

I remember all that I'm thankful for; especially that my daughter is here in my arms. It could be so much worse.

And then I go to Target.  Because Target is always good for all that ails you.

Here are my shoes. Take a walk in them

DBlog week - Day 3
The Blame Game- Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another. And sometimes the way the doctor talks to you can leave you feeling like you’re at fault. Or maybe you have a fantastic healthcare team, but have experienced blame and judgment from someone else in your life – friend, loved one, complete stranger. Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had. Now, the game part. Let’s turn this around. If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself? Let’s help teach people how to support us, rather than blame us!

Just recently, I was out for dinner with a friend.  She kept asking me questions about why Fred and I don't go out on date nights. Or why when my mom comes to visit, I don't leave the kids with her and get out of town for a few days with Fred.

If you didn't read my first post for Dblog week, I'll sum it up... Elise's blood sugars are wonky after dinner.  Just plain awful.  They follow no trend, and every night is different.  For example, a few nights ago she had 125g of carbs for dinner.  I started off bolusing her for 40g.  And that's all she needed, for the rest of the night. She stayed right in the low 100s.

Until 3 am, when she was 300+. A full 9 hours after she ate.  And no, it wasn't pizza.

A few nights before that, I bolused her for about 1/3 of her meal, because she was going to a 90 minute soccer practice.  She ended up almost 400.

I had only bolused for 1/3, because the night before that, I bolused for 40g of an 90g meal.  We went to her brother's soccer practice where she sat an played with some kids.  She tanked to 52 and stayed there despite 30g of carbs.

Do you see what I'm dealing with?

If it's extremely difficult for me to deal with (and I've been doing this for close to 9 years), how can I expect someone who has little to no experience to handle it?  The times Fred and I have left her, we spend the entire time texting or on the phone trying to handle it from afar.

When my friend said, "I just hope this isn't an excuse you're using", I wanted to scream.  She didn't say it in a mean way, it just showed me that I can try and explain until I am blue in the face, and they won't get it.

It's exhausting.  It's demoralizing. It makes me angry. I feel stupid, because I. Can't. Fix. It.  I've tried and failed more times than I can count.  Sugar Surfing helps, but not every time. The endo can't even figure it out.  You don't think I want to go on vacation with my husband (and no kids)? Fred and I haven't had quality alone time since before Elise was born.. You don't think that's hard on a marriage?  It sucks. All of it. 

My friends have seen me struggle, and they don't understand.

As far as turning it around... I don't know what I want them to say.  Because they don't get it.  They never will.

This post was written after another hard night.  It's not always this difficult, but lately it has been.  And this post reflects that.

The Other Costs of Diabetes

DBlog week - Day 2
The Cost of a Chronic Illness- Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care?


My friends are  always astounded at just how much it costs to keep Elise alive.  I don't share it with many people, but there are times I get worked up about the cost of insulin, which makes them curious as to how much a vial of insulin costs.

After they goe over their inital shock, they always ask, "WHY?" Which leads to a rant about pharmacutical companies, insurance companies, and how the whole THE WHOLE DAMN SYSTEM IS BROKEN.

At which point, the friend is sorry they ever aksed.

But as broken as it is, my family is lucky to have good health insurance.  It's still not cheap, but we can afford what we need.  Even to so-called "extras" like a CGM.  And we have access to all the latest and greatest technology.

But, as some of you know, my husband and I are not from the U.S.  And some days we dream of moving to another country, just for a new experience.

And, if I'm being completely honest, diabetes gives us (well, me) pause.  Because there are so many "what ifs" when it comes to diabetes.  What is we can't get the supplies we're used to?  And how expensive are the "extras". What if the standard of care is not what we expect? What if it's even harder to get what we need than it is now? 

Because, like water flowing down a hill, I would much rather take the path of least resistance.  Living here is not bad, but it IS known. And therefore, not scary.

The unknown for me? Very scary.

I can't heap all of the blame onto diabetes.  It gets trickier when there are kids involved.  Our older two are in a great school; where they're involved in a wonderful GT program, dual language and STEM. Not to mention we have the BEST school nurse in the world.

So here we stay.  Provided for and comfortable.  Happy, even.  But still curious to what the rest of the world could hold if diabetes was not a part of our world.

I just wanted to add that I get the whole "don't let diabetes stop you from doing anything" thing. I just wanted to be honest about who I am, and how sometimes, diabetes can make it easy for me to say no. I'm getting better... Elise has been to two (!!!) sleepovers in the last few months. I'm doing my best, despite the fear, to not let diabetes rob her of any experiences.  It's a constant battle, friends.

Expecting the Unexpected

DBlog week - Day 1
Diabetes and the Unexpected- Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random. What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected? 

Elise has always had dinnertime issues.  Even back when she was on shots, dinnertime was difficult.  Her problem is this; give her all her dinnertime insulin in one bolus (no matter what she's eating), and she goes low.  

When she was on shots, as long as we gave her diluted insulin at dinner (u-50), it was fine.  But now that she's on a pump, we have  to just watch her CGM and bolus as needed.  

It's exhausting.

The hardest part is that it's not always the same.  There are rare nights when she needs everything up front.  Sometimes it only takes a few hours.  And sometimes, it can take up to 5 hours to dole out her dinnertime insulin in little micro-boluses.  And if I slip up and get distracted, it can get ugly.

And yes, I have messed with I:C ratios, basals, and extended boluses.  Nothing works.  Except watching.  And bolusing.

We've been doing this as long as Elise has been on the pump.  Unbeknownst to me up until a few years ago, this is actually a thing.  It's called Sugar Surfing.

Dr. Stephen Ponder (a pediatric Endo, and T1) has written a great book about it, and also has a Sugar Surfing talk that he gives.

Reading his book, and going to his talk (twice), has helped me fine-tune my evening sugar surfing.

As an aside, Dr. Ponder is going to be at FFL this year!  Make sure you check him out... his talk is engaging, funny, and full of great tips!  I might even go for a three-peat!

I may not have an answer to why Elise absorbs her food more slowly at dinnertime, but I am thankful that through some (or a lot) of trial and error, I've found something that somewhat works for us.

And that seems to be how you do it with diabetes.  Keep trying stuff until you figure it out.

And learn to expect the unexpected.

Diabetes and Disasters... a follow-up

Tips and Tricks - Friday 5/20 

Let's round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There's always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.)

My name is Joanne, and I horde diabetes supplies. 

Remember this post from a few months ago, when I told the story of a co-worker of Fred's who lost his house in a tornado?  I wrote about wanting to organize Elise's supplies in such a way that they would be easy to grab in case of an emergency.

Well, I am proud to say... I did it!

It tok a few days, but here are the pictures to prove it:

The before... yikes

The carnage begins

I found these totes at Costco for about $10 each

Because the dex boxes take up too much space, I bought large ziploc bags and organized the sensors by date

The aforementioned ziploc bags.  I'm entirely too lazy to flip the picture.  Sorry

The totes now reside at the back of our tornado room

So shiny and organized! That paper taped to the door? Instructions on mixing U-20 insulin.  I can't bring myself to take it down for some reason.

I keep enough supplies in the cupboard so I'm not continuously running to the closet, and everything is organized by date, so I know what to use first.  It feels good to have it all together!

Now I just need to keep on top of it as supplies come in.

Pardon the interuption

I wrote most of my posts last week with the exception of the Thursday post.  I thought I'd get to it at some point before it needed to be posted.

I didn't.

Instead I got bronchitis.  And then the medicine made me sick.  Last month, I broke my ribs playing soccer, and all this coughing and barfing has kinda sucked.

So, instead of a wildcard, I'm playing the sympathy card. I'm hoping at some later point I'll finish up my post.

And thank you for all the comments.  I'm sorry I've sucked at reading and commenting in return.

When is a joke not a Joke?

Language and Diabetes - Wednesday 5/18

There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I'm willing to bet we've all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don't care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let's explore the power of words, but please remember to keep things respectful.

I fall somewhere in the middle on this one.  While I prefer saying Elise has diabetes (instead of Elise is diabetic), it is not my hill to die on. 

I will say that when people use "pricker" vs. lancet, I have to suppress a giggle.  Because as I've said before, I have the sense of humour of a 12 year old boy.

What gets me, though, is using diabetes as an insult, or in a derogatory way.  Referring to a dessert as a "diabetes bomb", or "diabetes in a cup".  When I heard that there was such an insult in Hotel Transylvania 2, I decided my kids would not be seeing that movie.

You see, I think it awful to joke about a disease in a way that's ignorant, or helps to spread ignorance. It leads to people actually believing that Elise got diabetes from a piece of cake.   It reduces people with diabetes to a punch line, and that's not cool.

"But Joanne!" You say, "It's all in good fun!  Laugh and the world laughs with you, and all that."

But sometimes, it's not funny.  Diabetes can be destructive; physically, mentally, and financially.  It can go hand-in-hand with depression and eating disorders.  And in the worse case scenario, it kills. Sometimes at random and with no warning.

Too many times it has caused my daughter to cry deep, tortured sobs.  I've held her as she has wailed about how much she hates this disease, even saying she "wants to quit life".

So you'll excuse me if I don't feel like laughing.

I am slowly going crazy...

 The Other Half of Diabetes - Tuesday 5/17 

 We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

I often joke that when I gave birth to my kids, most of my brain must of come out too, because I think I've become dumber with each child I've birthed.

Add diabetes to the mix and it's amazing that I rememeber to dress myself before I walk out the door.  Mentally, I am exhausted.

Over the past two years, diabetes has become increasingly frustrating.  Elise doesn't follow trends.  She is STILL on the same dose of insulin she was when she was 6... her TDD is about 10 units (she usually eats 50-100g per meal).  She goes through periods where we don't bolus her for meals.  Or only bolus by half.  We've never been able to bolus her fully for her dinner.  We do it manually over a period of five hours.  

And then there are the times she's high no matter how much insulin we dump into her.

For about a week, Elise was going high after breakfast... into the 300s and only coming down to the low 200s by lunch.  So I lowered her I:C ratio from 1:26, to 1:24 (the difference in her bolus was .20 units).  And the last two days she hasn't gone over 160 before she crashes.  WHHHHYYYY? 

Mentally, it's exhausting.  It's like an enigma, wrapped in a paradox, stuck inside a conundrum.

Or something.

I don't really have any sage advice on how to deal.  My method is to rant and rage (to my husband, a friend, my blog, or an empty room), and remember all that I'm thankful for; especially that my daughter is here in my arms. It could be so much worse.

And then I go to Target.  Because Target is good for all that ails you.

Of Applesauce and Advocacy

Message Monday - Monday 5/16

Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?

It happened the other day in the applesauce aisle of the grocery store... as all good advocacy stories do.  I was delighting in all the clearance deals on my son's favourite apple sauce. She seemed to be overwhelmed by the sheer number of flavours available.  We made some small talk about applesauce when she dropped this bit of deliciousness in my lap:

"My son told me not to buy him apple sauce because he doesn't want to get diabetes."

Um... What?

She was quick to add, "I mean, it runs in my family.  I have it.  Type 2, that is."

I told her about Elise, and as we spoke some more, I showed her how I can see Elise's BG on my watch.  It was 71.

"Kind of low," she commented.  I let her know I was in contact with the nurse and the low had been treated.

"Couldn't she, you know... stop the low before it happens?  Maybe eat a handful of nuts. Or eat a snack every two hours?"

These were honest, genuine questions.  From a person who seemed eager to dispense some (what she thought was) helpful advice.

I told her that type 1 was different, and that my daughter would have to be psychic to ward off lows.  Sometimes they come out of nowhere.  We can do the same thing day after day, and get different results. And that everything (EVERYTHING) can affect her blood sugar, right down to the colour shorts she's wearing that day.  

Kidding... I think.

The woman then commented she didn't know type 1 was so involved and thanked me for the information.

And I guess that is why I still blog.

In the beginning there was an amazing group of mom and a few dads that were part of the blogosphere.  And a lot of it was about support, and community, and same-same.  I craved it and needed it at the start.

But as we continued our journey and the number of D-'rents blogging fell off, it became less about community, and more about sharing our story.  Hoping that friends would read it, and understand more about our life.  Wanting strangers to read it and know that they're going to be okay. 

I feel like I have a tale to tell, and if it helps just one person, then that's all I need.

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?

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.

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.

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.

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?

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.

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.

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!

My diabetes life hack

Friday - Diabetes Life Hacks

I don't have any hacks per se... most of them are medical in nature and I don't really feel like getting sued, so I won't be sharing them.  I'm not sure this counts as a hack, but one thing we have done since almost the very beginning is carb factors.  If you've been reading this blog for any amount of time, you may recognize the following post, but carb factors have truly saved our sanity around here.  Read on for why I think they are so awesome...

My name is Joanne and I weigh my daughter's food.

Pretty much everything she eats graces my kitchen scale.  And I'm okay with it.

It all started when she was diagnosed at the age of 12 months.  We quickly discovered that even 3g of carbs would raise her BG by 70-100.  Even these days when treating a low, we use 6g if we're dealing with anything 50 and above.  Just the other day, she was 53 and I gave her 6g.  A mere 10 minutes later, she was 134.

I guess she's just really sensitive to carbs. 

And I like weighing because it's the most precise way of counting carbs.  It also takes one thing out of the equation when you wind up with a wack-a-doo number after eating.  At least you know you counted the carbs correctly.

I love carb factors because they make it so easy to figure out carbs.  If you've never heard of carb factors before, here is a brief run-down:

Different foods are made up of different parts: carbs, fat, fiber... etc. Carb factors are the percentage of a food that is made up of carbs. Let's use a banana as an example. They are 20% carbs, or have a carb factor of .20. But how do I figure out exactly how many carbs are in the little bit that I give Elise for a snack?

To figure out exactly how many carbs are in that piece of banana, all I need to do is weigh the banana (in grams, not ounces). Since I know that any portion of a banana is 20% carbs, all I need to do is multiply the weight by .20 (the carb factor for a banana). So if a banana weighs 15 grams, the amount of carbs in that banana is 15 x .20 or 3g of carbs.

You can even use carb factors for pre-packaged foods. Elise LOVES goldfish crackers, but can't eat an entire serving. To figure out the carb factor for her crackers, I just divide the amount of carbs in a serving (19g), by the serving size (30g). Remember, all weights MUST be done in grams for it to work. So goldfish crackers have a carb factor of .63. To find out the carb factor of any packaged food, it's always carbs divided by grams.

Figuring out the carb factor for homemade food is easy too! Just figure out the # of carbs in each ingredient and weigh the whole thing and add up all the carbs and divide the total carbs by the total weight and you now have the carb factor for your food. So when I made a stew for dinner the other day, I weighed all the veggies and other ingredients that went into it. The whole pot of stew had 80g of carbs. When it was done, I poured the stew into a container, weighed it, and it came to 1560g (not including the weight of the container, of course!). Then I divided 80/1560, and found that my stew has a carb factor of .05.

My favourite thing about carb factors is how they make it easy to figure out the carbs of almost anything.  Even if you don't have the nutritional information, you can use a generic carb factor and come pretty darn close. 

For example, bread for the most part has a carb factor of between .47 and .59.  When eating out at a restaurant, I use a generic carb factor of .5 for that yummy, warm, soft bread that comes at the start of the meal, and it usually turns out fine.

Or pasta sauces are usually between .07 and .12 (hint: the more meat, the lower the carb factor).

Mashed potatoes generally run between .18 and .22.

Brown rice? .23.

Vanilla ice cream?  .23 to .25.

Because I have a good head for numbers, I can remember the carb factor for almost anything Elise has ever eaten.  It really has made eating out so much easier for us.  I can barely remember my own name, but I do know that nuggets at CFA have a carb factor of .1.

The other day I was making a cold oriental noodle salad dish for dinner.  It had noodles, chicken, carrots, edamame, and a "dressing".  I must have lost my brain somewhere that day, because I threw everything in a bowl without weighing and figuring out the dish's carb factor.  Oops.

I had never made it before, but I had made pasta salad lots of times, and they all have noodles, veggies and meat, so I decided to use the carb factor for one of my pasta salads (.15 if you're wondering).

The result?  She was 104 before dinner, and 124 about 3 1/2 hours later.  I call that, "rockin' the casbah".

And that's the main reason I weigh and use carb factors.  D throws so many other curves at us, I like to try and control what I can.  Sure sometimes we forget the scale.  And I always eyeball and SWAG the cupcakes at a birthday party, but I think weighing Elise's food has a lot to do with why her A1Cs are in the low 6s.

So that's my "diabetes life hack".  Stay calm and weigh on!

Mantras and more

Thursday - Mantras and More
Yesterday we opened up how diabetes can bring us down. Today let's share what gets us through a hard day. Or more specifically, a hard diabetes day. Is there something positive you tell yourself? Are there mantras that you fall back on to get you through? Is there something specific you do when your mood needs a boost?

Today I'm phoning it in... I have a load of laundry going, another in the dryer and a dishwasher that needs to be emptied.  And a baby that is waking up and will want to nurse.  And let's not forget dinner.  

So, instead of imparting any wisdom I may have on this subject, I will rely on the words of others.  I love these two quotes; just reading them will simultaneously bring tears to my eyes while steeling my resolve to keep on, keeping on.

I hope they inspire you as well.

"The greatest glory in living lies not in never falling, but rising every time we fall" 

-Nelson Mandela