One disease to rule it all

I am a huge Lord of the Rings fan. I love the interwoven themes, the cast of characters, the rich and deep storytelling. It's a world that you can delve deep and get lost in. Like most of the great tales, I can usually find myself identifying with one of the characters.

Lately I've been feeling a lot like Frodo. The quiet hobbit who was thrust, very reluctantly, into a position he didn't want, and worse, felt unprepared for. He was given a daunting, almost Herculean task. And the fate of others depended on his success. The ring, the very thing that was entrusted to him, threatened to destroy him.

My daughter's diabetes is my ring. I don't want it. I'm unworthy of doing battle with it. It threatens to overrun my spirit; my very being. And while it will not take my life; it is very capable of taking Elise's life.

To me, Diabetes is the one disease that rules it all (and no, I'm not comparing it to other diseases in this case). What I mean is that it touches every part of your life, and nothing emerges unscathed.

Diabetes rules your relationships. Is there anyone who is reading this who has not lost friendships because of this disease? Has your marriage not been affected? I am also happy to say that I have gained many dear friends due to diabetes.

Diabetes rules your watch. BG check time, shot time, meal time, snack time. Repeat ad infinitum. Almost every hour on the clock seems like it's dictated by this disease, and hardly a minute goes by when you're not thinking about it.

Diabetes rules your calendar. Maybe one day when we're on the pump it won't be like this, but for right now we've had to turn down two birthday parties this month because of the timing. One is in the afternoon, falling right between snack and dinner time. Plus they're serving cake and ice cream. It breaks my heart to think of the fun Elise will be missing. Hopefully one day soon, this won't happen as much.

Diabetes rules your pocketbook. I shudder to think about the amount of money we have poured into this disease. And while I would pay 100 times that amount to keep Elise healthy, I worry that there might come a day when we can't afford it.

Diabetes rules your food. If Elise could chose her favourite meal, it would be pizza and pasta, some french fries on the side and ice cream for dessert. That girl loves her carbs. And while I let her eat all of the above, I try to limit her to one high carb item per meal. But what I hate most is when, at the end of the meal and all her carbs have been accounted for; she asks for one more piece of bread. Or a bit more pasta. And I have to say no. It. Just. Sucks.

Diabetes rules your sleep. Or lack of sleep. Midnight, 3 am, 5 am checks... doesn't leave a lot of room for any shut-eye.

Diabetes even rules your very soul. Do you not feel lonely? Alone? Like nobody understands or even cares? Do you find yourself in a deep funk; unable to get out? Sometimes I feel like if one more thing is added to my life, I am going to go crazy. Some days I am so overwhelmed, all I want to do is sit on the sofa and cry until there are no more tears. I miss the old me. I feel like I'm half the person I used to be.

In the end, Frodo manages to reach Mount Doom and the ring is destroyed. And as much as I wish this could happen with Elise's diabetes, unless there is a cure, it will not. There will come a day where the quest for me is over, and I will pass the ring onto Elise. But there will be no destruction in our tale unless we find a cure.

Until then, I will carry this burden, my ring. It can have everything else in my life, but I will not let it rule me.

Christmas with a touch o' the plague

Christmas has come and gone and though only two days in the past, it's but a hazy memory for me. Mostly because of the aforementioned plague in the title. But enough about the yuck... I've decided to do a post about our Christmas from start to finish. But lucky you, it's mostly with pictures! So, enjoy!

We started off December with the our yearly trek out to the tree farm to find the perfect tree. Well, when it was just Fred and I; it was a search for the perfect tree. When Elise came along, it became the search for a pretty good tree. Then came diabetes, and we were happy with an adequate tree. Now with Mattias is the mix, we're happy to get out of there with a tree.

By the way, managing a three hour drive (round trip), a hay ride, finding and chopping down a tree, and a playground stop on a newborn's and a diabetic's (on NPH no less) schedule and having NO major catastrophes is HUGE! Holla!

loving the tire swing

I love this picture. No shots, no finger pokes, no carb-counting; just a little girl enjoying the day

hay ride!

This tree was Elise's pick

We found it! (why yes, that IS a burp cloth hanging out of my pocket. I am sooo stylin')

posing with the tree

father and daughter

self-taken pic... not sure what is up with my lips. Maybe it's my picture-taking face?

Not gonna let D kill one of my favourite traditions... making gingerbread cookies! These little guys have only 5g of carbs each (including icing and M&M)

Yum!

Another fun tradition is taking our pic in front of the tree. The post below this one has our finished product.

Self-timer fail... although Elise looks cute!

Christmas Eve we head out to church and then to a nice steak dinner with friends afterwards. During the service, our pastor calls all the children to the front and reads a story to them every year. This year, Elise ran down all by herself. I was kicking myself for not checking her CGM first!

Elise's Christmas dress

Love!

You can't tell, but I'm dying in this picture.

Christmas morning, like pretty much every D-family, breakfast comes first. Then it's present time!

This was all the action Mattias saw. He went down for his nap right after this picture.

Note: Seven stalking Elise. Our dog loves to unwrap presents and she was just waiting for her turn!

I think 95% of her gifts were princess-related

Elise LOVED her gifts from our Secret Santa; Thank you Wallace Family from Oshawa, Ontario! If I had known our Secret Santa was Canadian, I would have sent her my list of foods that I miss!

Groovy Girl princess!

Stickers too!

Mattias loved the wrapping paper!

And his car (from Secret Santa)... he happily chewed on that bad boy all day!

If you made it this far, congrats! I know it was a long post, but I though it would be fun to chronicle our Christmas from start to finish! I got THE coolest present, but that's for another post. This one is too long already!

Merry Christmas to all and to all a good night!

Be Prepared

I was a Girl Guide as a child (Canada's answer to Girl Scouts), and although I didn't really enjoy being a Girl Guide (I was a very shy child and hated to be a part of big groups like that), I took their motto of "Be Prepared" to heart. Mostly because I was born anal-retentive.

I like to be prepared in any situation, for any situation. I do not understand what the words "pack lightly" mean. This lends itself nicely to being the parent of a Type 1 Diabetic; I can't think of any other disease that causes the caregivers to become pack mules.

But I have to admit that I've become a wee bit lazy in my "being prepared". If I'm running out to the store with Elise, I don't always take her insulin with me. I pretty much always have something for a low, but there have been times when we're going to Target or the grocery store and I've forgotten her emergency kit at home. Instead of turning around, I just figure I can grab something at the store if she goes low.

That's why the story in Sarnia, Ontario has given me great pause. For those of you unfamiliar with the story, motorists were stuck for over 24 hours on a highway due to a snow storm and had to be rescued.

On a side note, when the local news had a blurb about this story, they said it took place in Ontario Canada. Ontario is a pretty big place, folks. Let's narrow it down a bit. It's sort of like saying, "a tornado destroyed a town in Texas. In other news..." I'm just sayin'.

And it made me think... what if something like that happened to us? What if we were stuck somewhere with no access to food or the life-saving insulin my daughter needs? What would we do? Now granted, we don't get much snow here, but it reminds me of something that happened to us last Christmas Eve.

We were coming home from dinner following the Christmas Eve service at our church. It was a pretty bad storm for these parts; snow was coming down sideways. We did okay until we reached an overpass. The problem with overpasses is that they freeze when it's snowing/sleeting and become hills of ice. We tried to go over it, but kept sliding backwards. Other cars were coming behind us and were getting stuck too.

It was growing closer and closer to the time that Elise needed her bedtime insulin (which I did not bring with me) and a snack (I don't think I had any food with me either, she had eaten everything at dinner). Thankfully, Fred is an awesome driver and drove backwards through the maze of cars until he made it to an intersection. We then drove along the feeder road until we could drive under the highway instead of over it. A trip that normally takes 15 minutes took almost 90.

Thankfully, it ended well. But that memory, plus the story out of Sarnia, is the kick in the pants I need to become more committed to being prepared. As the mother of a 3-month old and a type 1 diabetic, I have a lot of crap to haul around with me. But the alternative is just too scary.

So tell me. How do you prepare? What are some of your must have items? Are there any products you just cannot do without?

***Yup, that's a picture of a sassy 5-or-6 year old me as a Brownie (I couldn't find any good Girl Guide ones). Go ahead, laugh. But I think I was cute as a red-headed button.

All I want for Christmas

I remember Christmas as a child as an exciting time. Starting when the tree went up, and packages started to arrive in the mail. Slowly, the empty space beneath the tree would start to get filled up by brightly coloured boxes and bags; each concealing their secret that would be revealed on Christmas morning.

On Christmas Eve, I would always sneak down after Santa had come to see the tree in all it's glory. I would marvel at how it towered; the lights casting rainbows in the darkened room. I would take in all the gifts piled at the bottom, then quietly steal back upstairs to my room to await the carnage of the morning.

As you grow older, the meaning of Christmas changes for you. Traditions. Family. If you are religious; Jesus. The gifts slowly fade in importance. But there is one gift I would give anything for.

It cannot be wrapped or bought. It takes away, rather than gives. Of course I'm talking about a cure. It goes without saying that I would forgo gifts for the rest of my life, if I could just have this one thing.

I know I probably won't get it this year. Or the next. Or for many years to come. But it will always be at the very top of my list.

Another post in which I talk about stuff

Let me just start off by saying I've had a perma-grin ever since I woke up Friday morning and saw how much everyone enjoyed the video. When the idea popped into my brain, I thought I'd put it up on my blog, and my fellow D-moms, D-dads and other D-peeps who read my blog might get a few chuckles out of it.

But apparently, it's been shared on facebook (which I'm not on) over 1200 times. And people find it funny, which tickles me to death. Seriously, one of the best things a person can say to me (besides the fact that I'm an awesome wife/mom/substitute-pancreas), is that I make them laugh. So thanks for all the comments, sharing and love!

On Friday we had our endo appointment. I think we have a reason why Elise's numbers have gone coo-coo bananas over the last three or so weeks. In three months she grew over an inch and gained almost three pounds. Holy growth spurt! Things are slowly returning back to "normal-ish".

We did talk about a pump, and I am signed up for an upcoming pump class (not until March - ugh). I'm still debating. How much of it should be the child's choice?

I've talked to Elise about a pump, but I don't think she quite gets it. The only pump she's ever seen is the Omnipod, but I don't think we'll be going that route (unless I see the new version and it is WAY smaller than the current one). She didn't seem all that excited about it anyway, except to say she wants a pink one.

I almost forgot... A1C came back at 7, which is exactly the same as three months ago.

To quote the Talking Heads, "same as it ever was." And I'm okay with that.

What not to say... the video

I couldn't resist. When I saw a similar video about things people say to the parents of multiples, I thought, "Somebody totally needs to do one for diabetes."

Then I thought, "I should totally do one for diabetes." So I did. First, I re-read the very funny post by Kelly Kunik, and the hilarious comments and incorporated some of them into the video.

I wish I had more time to make it better, but this finished product took me almost 8 hours to make; not 8 straight hours mind you, but 8 hours of me doing 5 minutes here and 5 minutes there.

So enjoy. Sorry Reyna, that I didn't incorporate any bad - er - colourful language into it. Little ears were listening. I was even admonished for using the word "stupidity".





For those of you who cannot see it on my blog, click here for the YouTube link.

Blurgh

I'm not sure "blurgh" is really a word, but it's how I'm feeling. Tomorrow we have our endo appointment, and usually I have a pretty good idea on where we stand. But for once, I have no idea.

Hopefully we'll get some answers on why Elise's BG is soaring and plummeting at dinnertime. She can go from 130 flat to 300 double arrows up and 150 double arrows down all in the span of an hour. That cannot feel good. We have tried all sorts of tricks (short of giving her two shots), and nothing seems to be working.

The other night when she had her skating lessons, I withheld her shot for about an hour after she started eating. She was in the 300s when I put her on the ice, and when she came off 30 minutes later, she had double arrows down on the CGM and her BG was 82. Blurgh.

(I'm even thinking of giving her a low-ish carb meal - about 20g - for dinner, and not giving her a shot at all, just correcting at bedtime on skating nights. Anybody have any thoughts???)

We'll also be discussing pumps at our appointment, and I'll be trying to weasel out of pump classes (at least one of them that our endo makes you take). A pump seems to be in our imminent future, but I'm not looking forward to trying to figure out which one to go with and then starting the learning process over again. The mere thought of it exhausts me. Blurgh.

Today Elise told me her heart hurts. What the crap does that even mean??? Blurgh.

And today is Elise's pre-school teacher's last day. Miss C has Type 2 Diabetes (dx about 1 1/2 years ago), and she's having trouble managing her BG. So she's leaving her job to get a better handle on it. If you ask Elise what her favourite thing about school is, her answer is, "Miss C!"

I can't say enough about how this woman has helped Fred and I to feel completely comfortable with leaving Elise with anyone for the very first time in her life. Because of her, we were able to take this step, and Elise is so much better for it. Miss C went above and beyond for us, and I am so sad that she has to leave. I understand, but I'm still sad. Today Elise told me, "I'm going to miss Miss C!" Blurgh.

My in-laws are coming tomorrow and my house is one big trash heap. Instead of complaining via a blog post, I really should be cleaning. So I'm off to find my vacuum.

Say it with me... BLURGH!

Do you hear what I hear?

Some time ago I saw THE best Christmas cards in a store. On the front of the card, there was a choir of people wearing those oh-so-wonderful backless hospital gowns. They were singing, "Do you hear what I hear?". The caption on the card said, "Christmas at the mental hospital".

Funny? You betcha. Politically correct? Probably not. What does it have to do with this post? Not a whole lot, except these days Fred and I find ourselves saying, "did you hear that?" to each other a lot.

If you or your child has a CGM, then you are well-acquainted with it's many alarms; of the buzzing and beeping variety. My ears are finely tuned to be able to hear these alarms at all times.

The problem is that there are probably no fewer than 8 different items in our house that make similar sounding (or similar enough sounding to my very tired and very overworked ear drums) noises. Fred's Ipad, my laptop, my phone, Fred's phone, the smoke alarm, microwave, stove alarm, furnace (yes our furnace makes a buzzing noise. I'm told that it's okay) ... and that's not even counting the plethora of Elise's toys that boop, beep or buzz in some manner.

It's enough to drive a person crazy. Although for me, it's a very short trip.

Just today, I was sitting on the sofa with the TV on. Elise was in her room, having her "rest time" (since she recently decided not to nap anymore, I still send her upstairs for an obligatory momma-needs-a-break-from-YOU time), when I heard a very distinct buzzing.

Now usually Elise will call to me through the baby monitor, saying "my phone is ringing!" (and ohmygoodness that STILL tickles me that she says that) But there are days that she does fall asleep, so I lugged my behind upstairs to find her wide awake and a 105 flat on the monitor. Weird.

I decided it must have been on of the other noise-makers in the house and went back to my business of killing brain cells. It wasn't until a few hours later when I happened to be passing by the TV (which was still on) and heard the buzzing again. Turns out it was some stupid commercial!

It's so interesting to me that something that is just an every day noise to other people, causes us D-parents to snap to attention. My favourite is when Jessica, Laura and I are all hanging out and we have to figure out which of our kids is doing the buzzing or beeping.

Maybe Dexcom could have a music player on their next receiver... that way, instead of a buzz or a beep when Elise is low, it could play "Low" by Flo Rida.

I'm just sayin'... we've got to get our chuckles where we can.

They did it!

I am always in awe when a person with diabetes takes on very physically demanding challenges and does well. If you haven't read Reyna's posts about how she keeps up with her energizer-bunny-of-a-kid Joe, you should. Just reading them makes me want to take a nap.

Because let's face it. Diabetes and activity of any kind is not easy to manage. And the Amazing Race is physical activity on crack. And that's what makes this season's win by Nat (PWD) and Kat that much more incredible.

Nat and Kat were, without a doubt, my favourite team in race history. Diabetes aside, I have never seen a classier team run the race. I don't think I heard them utter a cross word to each other once, and I also read that Kat helped Nat out with a lot of the diabetes management.

I am not ashamed to admit that I cried when I saw Nat and Kat running for the finish line. Elise was watching with me, and I just lost it. I became a blubbering mess of mommy goo.

Because it means so much to me to see someone with diabetes prevail. Through the extreme heat. Extreme cold. Exhaustion. Hunger. Hardship. Fear. Different time zones, cultures and food. Nat not only made it through, she and Kat came out on top. And the first all female team to win it too!

I'm sure Nat Strand didn't set off on this adventure to become a role model, but I think she has. To all the kiddos out there who think diabetes might hold them back. To all the parents who fearfully wonder how this disease could limit their child.

Congrats and thank you Nat and Kat, for running such a classy race. I loved seeing two smart, sassy, and determined ladies take the top prize!