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Wednesday, December 29, 2010

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.

Monday, December 27, 2010

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!

Wednesday, December 22, 2010

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.

Tuesday, December 21, 2010

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
.

Sunday, December 19, 2010

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.

Thursday, December 16, 2010

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!

Tuesday, December 14, 2010

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.

Monday, December 13, 2010

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!

Friday, December 10, 2010

BG Nirvana

Things have been going so terribly BG-wise the last few weeks, I thought I would take the time to celebrate today.

That huge spike and drop you see is dinner last night. She goes crazy high and them plummets back down. I'm slowly trying to figure it out

Oh sure, I was up three separate times last night to deal with a low blood sugar, but we started off the day at 151, and that's the highest she's been so far. Her BG today has ranged from 80 - 151. Aside from that spike, that's a pretty good-looking 24-hour graph.

Even better, that first mountain (more like a hill) you see in this pic below is Elise coming down while she's eating her breakfast. Note, there is no post-meal spike. Ha, I totally made breakfast my bitch today. Dinner... you're next.


post-breakfast

Wishing you a Merry Christmas!

Wednesday, December 8, 2010

If I don't get off this coaster soon, I just might vomit

As I was perusing my D-Mom and D-Dad blogs a few days ago, I noticed a common thread... there are a lot of us riding the glucose roller coaster right now. And I'm wondering what planets are in alignment to unleash this hell upon us.

For us, it started off with just dinner problems; we had to start giving Elise her insulin about 25 minutes after she started eating because if we gave it any sooner, she would drop low, we would have to give her some fast-acting carbs, then she would sky-rocket from all the extra carbs.

But it's still not a fix... as we watch the CGM we see that she holds steady while she's eating (once we had a record 45 minutes steady BG, she didn't start rising until after she had finished eating). We usually give her the shot as soon as we see the slanted arrow up appear. Unfortunately with this method, we get double arrows up into the 300s, then double arrows down. All in the span of an hour. If I give it any earlier, she crashes.

Tonight, she was 151 going into dinner. I gave her 1.5 units for almost 40g of carbs. She held steady for 25 minutes and started to go up. I gave her the shot, and in 30 minutes, she's almost at 300 with double arrows up. I looked at the CGM 20 minutes later and she's at 179 with double arrows down. And 15 minutes after that, she's 96, double arrows down. She's 84 via her meter, so I give 7g. Now I'm just waiting for the spike to happen (and it will).

My brain is so fried from trying to figure this out. This issue only happens at dinner. Her ratio at dinner is now over twice what it is in the morning. I think our next step is to go back to diluted insulin at dinner time. I can't stand to see the peaks and valleys on the CGM, but I'm too afraid to take it off of her for fear of missing a crash.

I have never felt this helpless, useless, and downright hopeless before. Nothing we try has worked. And it's got me in a funk. I think we've had smooth sailing for so long, I don't have the capacity to deal when I can't figure it out. If you've been reading my blog for awhile, you know that we don't bother with the CDEs at our endo because they have proven themselves useless time and time again. Talking to them would drive me to tears.

Thankfully, we do have an endo appointment in 9 days. But I don't think I'm going to last that long.

Tuesday, December 7, 2010

She's a natural


CGM before lesson: 94, double arrows down
Actual BG: 74
Extra carbs consumed: 14g
Watching your child partake in something that is near and dear to your own heart: PRICELESS!

So you can suck it diabetes, nothing's going to stop this girl from enjoying her Canadian roots!

Sunday, December 5, 2010

Always something there to remind me

Do you know what I hate? That diabetes never completely leaves us alone. It's always there, like a nosy neighbour who comes knocking at the most inopportune times, intent on driving you crazy.

Mattias has reflux. Bad. Like, 60-plus-burp-clothes-are-not-enough bad. Like, 8-outfit-changes-in-a-day bad. If reflux was an Olympic sport, he would win the gold medal, earning perfect 10s for volume, accuracy, and number of times. You get the idea.

In the last few weeks, I noticed his feedings started to taper of. I wondered if 2-month old should only eat six times a day. Then, the length of nursing started to shorten too. He would wake up in the morning and feed for only 6 minutes on one side, and be done. If I even attempted to make him feed more, he'd scream.

Otherwise, he seemed fine. Growing, smiling and just generally being the good baby that he is.

My major freak-out happened last Saturday. He hadn't eaten in 5 hours because we were out running errands. He seemed happy enough until we got home and I tried to feed him. It was like I was torturing him. He refused to eat. He had done this a few times before, but I could always get him to feed if I just waited it out. This time he wasn't having it. And this brought out crazy Joanne.

Because this situation is so terrifyingly familiar. At about 8 months, Elise went on a nursing strike. Same sort of deal (minus the reflux). I thought maybe she was wanting to wean, but I wasn't ready for that, so we fought through it. It took about a month, and she came around. And started feeding more and longer than ever. Now I know why.

Because a few months later, she was diagnosed with diabetes. And now my mind is going there with Mattias. I can't help it. That Saturday I even checked his BG. It was 115. But I start to think... he hasn't eaten in 5 hours, shouldn't it be lower? True, he was VERY agitated. But... what if?

The hard part is that there are so many variables. The reflux... but he seems to be okay and doesn't cry when feeding anymore.

My thyroid level was high and my meds had to be adjusted. Over-active thyroid interferes with milk production. But if he's not getting enough, wouldn't he want to eat MORE?

I do have a history of making too much milk. Maybe he's getting enough in those first few minutes. But when I pump, I usually only get an ounce or so out of the side he didn't feed on. And sometimes his diaper is still dry after 3 hours.

So many questions, and I don't have any answers. He's been to the doc, and she says he looks good. No sign of infections. Gaining weight (for now - she says it could take a few weeks for his weight to slow down if he's not getting enough). He seems content. Rarely cries and loves to smile.

And yesterday he started feeding well again. And I was happy. Until I remembered what happened with Elise. And there was diabetes again, knocking on the door and wanting to be let in.


Mattias being diagnosed is not what scares me the most. I'm afraid I'll miss the signs; convince myself that it couldn't be, and he could get very sick. Right now I think about it to the point of being obsessed, and I have to hold myself back from checking his BG.

I just need a break. From the fear. The obsessing. But mostly, from Diabetes. Somehow I don't think that's going to happen.

Friday, December 3, 2010

I'd like to accept this award...


Okay, so I'm a bit of a slacker... I've been wanting to do this post but have had other things to blog about first. Better late than never, I suppose. Here are the rules of the award:

1. Thank the person who gave me this award
Tracy (Superhero and the Princess), Denise (My Sweetest Boy), and there might have been one more, but it escapes my tired brain at the moment... please feel free to speak up if it was you!)

2. Share 7 things about myself

-I will not shop at Walmart. I don't even care about the money you can save by shopping there. I have had too many instances of bad customer service and when I contacted them about it, their attitude was basically, "we don't really care". I refuse to spend my money at a business that doesn't value me as a customer. Now Target, on the other hand, rocks!

-I'm really quite shy when you first meet me. Some people have told me I come off as snobby. But once you get to know me, I NEVER shut up!

-I find fart humour and poop jokes funny. I'm really just a 12 year boy at heart.

-I can speed read. Not as fast as I used to, but I can read a 400 page book in a few hours. I LOVE to read, but don't have that much time to do it anymore.

- I am an avid people watcher. Fred makes fun of me because I have no self-awareness and don't even try to hide the fact that I'm staring. Elise seems to have inherited this trait.

-I am a money-saver extraordinaire. At the height of our debt, Fred and I owed over $75,000 in credit card debt. We became debt-free (except for our house) on our anniversary in 2005(it took us four years). I once paid around $2 for over $100 worth of groceries. Yes, I love coupons!

-One of my dream vacations is to do a bike trip through Ireland. The other is to see every major waterfall in the world. Hopefully we'll win the lottery soon, which would be a Festivus miracle if it happened, since we don't play.

3. Pass the award on to 12 bloggers you have recently discovered and who you think are fantastic

I'm going to cheat here and say, if you haven't done it yet, consider yourself nominated!

Thursday, December 2, 2010

Things I learned about diabetes this month... November edition

-Thanksgiving is the best when done with another D family. Fred and I are not from the U.S., so Thanksgiving is not a big deal to us. We usually get invited to someone's house. Since Elise's dx, Thanksgiving has been hard. Because she need to eat at a certain time (and not 3 pm which seems to be the norm for some strange reason). Because we need accurate carb counts. Because I will probably drive you crazy with all my weighing and calculating. This year, we ate with Jessica and her family. That girl can COOK! And she even figured out all the carb factors for the foods and made the most adorable list of them, complete with drawings. She sent it home with me... I must remember to scan it! The best part was how they get it. And it was awesome.

-When you check your baby's BG on the heel, you should not poke them in the middle if the heel, as the lancet could hit the bone and cause an infection. Rather, you should poke them on the side. This is per Mattias's pediatrician.

-Diabetes is going to cost me my teeth if I don't do something. All the stress from D-management gets taken out on my choppers at night. I grind my teeth big time. The other day, part of my tooth came away as I was flossing. I went to the dentist and he said it probably broke because of all the pressure I put on my teeth from the grinding. Greatness. Now I need a night guard. Merry Christmas to me.

-My daughter is a sugar-holic. She actually is disappointed when she's not low because she doesn't get any smarties. We had just started using those plastic wrapped bundles-of-pure-sugar for lows because we received a bunch of them at Halloween. I had to stop because of Elise's smarties jones. It would only take about 5 or 6 of those little suckers to get her back in range, but she'd cry when she didn't get the whole package. So now we're back to using bananas for lows. Plus I like to sing, "these lows are bananas, B-A-N-A-N-A-S". Because I'm weird like that.

Tuesday, November 30, 2010

Sending out the bat signal to the DOC

I need help. And while that's true on so many levels, right now I'm referring to help on the diabetes front. For the last week, Elise has been CRASHING after dinner, only to soar to record BG highs three hours later. I'll explain:

For her dinner, she usually gets 2 units of humalog, and 35g of carbs. The carb amount has been slowly creeping up over the last few weeks to 45g (I'd rather give her more carbs than try to measure out 1/2 units). We give her the insulin about 5 minutes before she eats at dinnertime, and her BG going into dinner ranges from 80 - 170.

About 1 hour after dinner, we start to see arrows down on the CGM. Sometimes there's a small spike, but a lot of times (like tonight) she stays even through dinner until she starts to fall. But when she starts, she falls fast. Like 100 points in less than 30 minutes.

A lot of times, we don't catch the crash until she's in the 60s (tonight we caught it at 80). We give her carbs (10-15g), then 3 hours later she's in the low to mid 300s and stays there most of the night. A few nights ago we had to correct her in the middle of the night (we've probably only done that 3 or 4 times since her dx), and last night we gave her the correction up front (because she was in the 300s) with her bedtime dose of NPH. And she STILL only came down to the mid 200s and cruised there throughout the night.

So tonight we lowered her dinnertime insulin to 1.5 and she still crashed. We gave only 7g of banana to bring her up. Right now she's out with Fred visiting a neighbour in the hospital, so I have no clue what her BG is, but she was holding steady at 103 when she left.

So what the what is going on here? The food she's eating isn't out of the ordinary. Tonight it was tortellini soup with some bread and yogurt for dessert. Last night it was sandwiches, grapes, yogurt for dessert and chocolate milk. It's almost like there's a delay in her food absorbing.

Everything else is normal as can be. I am just scratching my head over this one and would love any insight that anyone has to offer.

Edited to add: thanks everyone for the comments. If it were a food absorption issue, wouldn't it happen at every meal? Why just dinner? The food she's eating is the same as she always eats. And we haven't contacted our endo or CDE because; A) today is not the day to fax in logs, B) they won't talk to you without looking at your log, C) the CDEs are useless and I haven't talked to one in over a year and a half and, D) you have to go through a CDE first to get to the endo. Yeah, the system sucks.

Last night she was in the mid-300s all night and woke up at 242. Gotta figure this out.

Monday, November 29, 2010

Happy Anniversary, Blog!

Two years ago I was drowning.

Two years ago I was lost.

Two years ago, I had no idea if the loneliness would ever subside.

Writing has always been therapeutic for me. I used to write poetry to circumvent my teenage angst. After Elise was diagnosed, all that angst came back. Times 10. To the power of infinity. My head was going to explode if I didn't do something.

So I took a deep breath and started Death of a Pancreas. Oh sure, I had another blog, but it didn't seem to be the place for all the emotional vomiting I was going to do.

As well as a place to vent, I really wanted my blog to be a place where people in the same situation could come and see they weren't alone. Maybe to learn a few things. I wanted to share my vast two-months worth of wisdom with the world-wide-web-information-super-highway.

Instead, I was the one who was helped. I found others that had blazed this trail before me. I found encouragement. Understanding. Empathy. Friends... no, make that family. I found "same".

So on this two year blogaversary, I want to say thank you to everyone who reads my posts. Everyone who leaves comments. Everyone who has made this crazy journey a little more bearable.

And thank you, blog, for being the place where I can leave all my crazy and you never judge.

Sunday, November 28, 2010

Special Sib of a D-Kid Day

He's only two months old. He doesn't know how special he is.

He doesn't know how much he will love her.

He doesn't know how protective he will be of her.

He doesn't know that she will need him.

He doesn't know how much he will help me.

He doesn't know that he will fight for her when she can't.

He's only two months old. He doesn't know how special he is.

But one day he will.


Saturday, November 27, 2010

What would YOU do?

Have you ever seen that show, entitled "What would you do?" It's on one of the major networks and the basic concept of the show is they set up a dangerous/uncomfortable/bizarre scenarios, and then let their hidden cameras capture how people that see it, react.

For example, one time they had two people acting like they were on a blind date. When the woman steps away to go to the bathroom, the man, not-so-surreptitiously drops something in her drink. The man and the woman are in on it, but the people sitting around them are not. The point of the show is to see if people will step up to the plate and help the woman, or if they will mind their own business, or pretend they don't see what's going on.

The show really makes me mad. Rather, the people who keep their mouths shut and don't offer help in any way make me mad. And I had a first-hand experience with people that just didn't want to get involved.

You'll recall my post about Elise going low during a shopping trip. I am sad to say that there were people watching me during the whole episode, but never offered to help. Even when I was struggling with carrying an 40 pound child, a backpack, and a cart (don't ask me why I just didn't abandon it).

Even when I sat in customer service with a nearly catatonic child, the contents of my bag strewn everywhere. Discarded alcohol wipes, empty juice bottles and used test strips littered the seat next to me. As I sat and rocked Elise, I saw them watching me. Even a cashier that worked at the store stared at me every chance she got. But nobody offered to help.

It's not that I needed help, really... what could anyone do for me? But an offer would have been nice. Maybe they could have refilled the juice bottle with water for me when Elise asked for it, so I didn't have to leave her sitting on the chair by herself. Sure, the fountain was only about 10 feet away, but I wanted to stay close to Elise in case she passed out.

I think what I was looking for was a friendly voice. Someone to tell me it was okay, and I wasn't alone. Somebody to help me not to freak out.


I've always thought that I would speak up or step up in a situation where others wouldn't. After my experience, I now know that I would.

So, what would YOU do?

Wednesday, November 24, 2010

JDRF Awards dinner

A few weeks ago, we had our JDRF Awards dinner. Team Elise was honoured for our fund-raising efforts... the final tally for our team was over $16,000! Fred spoke, but was upstaged by Elise who got up on stage with him, then proceeded to prance and dance around the stage. I didn't know whether to laugh with everyone else or go fetch her from the stage. Laziness won out and I stayed in my seat. I didn't manage to get too many pictures, but here are some of my favourites...

Elise being... well, Elise

Having fun on stage


Liam and Elise



"Mine", she says


Oh dear, I think we may be in trouble


The "H" is a little droopy


This picture makes me smile. Love it. Love them.




Fred spoke, but Elise stole the show



JDRF Ambassadors - check out the happy couple in the front row to the right

Accepting our award. Mattias is snuggled in the wrap and if you look closely, his name tag is stuck on the outside!

Tuesday, November 23, 2010

Of all the things I've lost, I miss my sleep the most

I wake up every morning dismayed to find out that it is, in fact, morning. My nights are spent wandering in and out of sleep; punctuated with a few moments of sitting straight up in bed, thinking, "OH MY GOD, WHAT TIME IS IT? DID I SLEEP THROUGH THE ALARM? WHAT IS HER BLOOD SUGAR? WHERE ARE MY GLASSES?"

In our house, 6 hours of sleep is a good night. About 4 hours is the norm. If it were 4 hours of
uninterrupted slumber, I could live with that. Instead it is broken up into 30 to 60 minute increments. I think the longest I've gone without waking is 2 hours.

During the day, I walk past my bed and it calls to me; a siren's song
enticing me to just come and lay down for awhile. Giving a two-month old and a three year the run of the house while I take a snooze is not the best idea, but my resolve is growing ever weaker.

I think what vexes me the most is how I've aged about 10 years in the past two. I've never been
particularly vain about my appearance, but it used to tickle me when people would think I was a teenager. In fact, while I was pregnant with Elise (in the early stages... you couldn't tell), a guy at my church asked me what high school I went to. And no, he wasn't legally blind or senile. And no, it had nothing to do with my behavior either.

I know I'm preaching to the choir here. A very sleep-deprived choir. One that would probably fall asleep while singing
The Hallelujah Chorus from Handel's Messiah. But I feel like I am sleep-walking through my life. I'm never 100% present. My brain feels like it's been insulated with cotton. I forget words. What I'm saying in the middle of a sentence. Why I've come into a room.

When I do sleep, I have some of the most awful dreams you could ever imagine. Dreams of not being able to get the meter to work. Dreams where Elise is high and we have no more insulin. Dreams of a tornado and I can't find my glasses, so I try to find Elise without being able to see and I cannot find her.

I'm starting to wonder how long a person can live like this and stay sane?

Sunday, November 21, 2010

Thank you and maybe an explanation

First, thanks to all who responded to my last post. I was still pretty shaken up when I wrote that. Not because of the number, but because of how Elise was acting. We once had a 32 and she was acting completely normal. I have never witnessed anything like this before, and it still makes my heart race when I think about it.

One piece of good news, I think we've figured out that it wasn't anything I did. Rather, Elise has suddenly become more sensitive to insulin over the past few days. She has gone low after every meal that she's received a shot of humalog for (lunch she doesn't get a shot, so she's usually fine afterwards).

For example, this morning after her shot and breakfast, she only went as high as 136... and that's just after she finished! And that 136 was via the dexcom with a slightly downward arrow. We had to give her 7g just to keep her in the 80s, and after her mid-morning snack (15g), she never went any higher than 100. Dinner last night was a similar story to what happened on Friday, except we caught the low before it got bad.

Oh, and thank you to Tracy (Superhero and the Princess), and Denise (My Sweetest Boy) for my Versatile Blogger award... I need to do my post so I can put my award in my trophy case!!!

Friday, November 19, 2010

Respect the D

We had grand plans, Elise and I. Usually Friday night is "date night" for our family, but this time Fred was stuck at home dealing with a work emergency. So I asked Elise if she wanted to go out, just us girls. The response was an enthusiastic YES! Mattias needed his beauty rest, so he stayed home.

We hit up her favourite restaurant, the Macaroni Grill. Her dinner was grilled chicken, broccoli, and spaghetti. Of course she started off with their bread; dipping it in olive oil and balsamic vinegar. Which is the whole reason she chooses the Macaroni Grill.

And we finish off in style, a piece of chocolate cake. If you ask me, every dinner should culminate in this way. To allow for this carb-fest, I gave her 1/2 a unit more. It isn't often we girls get to go out on the town solo!

We then decided to so some shopping. And this is where it got bad. One minute she was fine, the next, she said she didn't feel so well. Her CGM wasn't receiving for some reason, so I got out her meter.

That's when I noticed all the light had gone out in her eyes and was replaced by a vacant stare. When I saw the number, I knew why. 36. Oh. CRAP.

I whipped out a bottle of apple juice and commanded her to drink. We were in the middle of an aisle, blocking traffic, but I didn't care. She was shaking so bad, a lot of the juice ended up on her shirt. Freaking out, I picked her up and ran to the customer service area so I could sit down with her and get her to drink some more juice.

Carrying her was like carrying a lifeless rag doll. A very heavy rag doll. Her head kept lolling to the side and I was pleading with her to stay awake. Finally I sat her down and continued to get the 1000-yard stare. Only 5 minutes had elapsed, but I checked her anyway... 64.

Okay, coming up, but she was still acting "gone". When I'd ask her a question, it took her about 5 seconds to answer. She just sat there. Not crying. Just staring. I checked her again... 95.

I cradled her in my lap, and she leaned on me as if her life depended on it. I felt the tears threatening, but I wasn't going to cry. One final check revealed a 130. And in an instant, she came back to life. Almost like nothing had happened.

She saw a stuffed Tigger and asked for it. That extra 1/2 unit of insulin at dinner brought me tremendous guilt, and what kept running through my head was, "of course you should buy it for her, you nearly killed her."

Not true? Hyperbole? Maybe. Maybe not. Maybe I sometimes I think I've got this disease figured out and dole out insulin and carbs rather cavalierly. More carbs should equal more insulin, right? Except for tonight, it didn't. Maybe I'm too cocky. Or I don't give this disease the respect it needs. I don't know. I do know this experience has left me rather shaken.

And Elise? Well, tonight she's sleeping with a stuffed Tigger cuddled in her arms.

Wednesday, November 17, 2010

Dear Mattias

You are my second born. My son. I have loved you since the moment I found out about you. And yes, I love you just as much as I love your sister. Such a strange thing for a mother to have to say, but I feel there just might come a day when you don't believe it.

I want you to know that it breaks my heart when I hear you crying in your bassinet. And I'd love more than anything to come scoop you up; hold you close and stop those tears from flowing. But I can't. I'm busy at the moment checking a blood sugar, giving insulin and preparing food. So you must wait. And though it might seem like all my attention is focused on your sister at the moment, you are certainly on my mind and I am working as quickly as I can to get to you.

And I hate to hear you whimper when your tummy is empty and you are asking for food. But I cannot feed you at the moment. You see, your sister has low blood sugar and I have to tend to her needs first. And the testing, giving carbs and re-testing might take awhile, especially if I'm waiting until her blood sugar is in a safe range. If I am nursing you, I won't be able to help your sister. And right now, she needs me. I know that you need me too, and I feel so torn.

I am sorry that you get the leftovers of our attention. The leftovers of our energy. Diabetes is a very selfish sibling and demands so much of our time. But that is no excuse. I hope you feel that you can tell us when you are feeling ignored. Just know that the patience, perseverance, and empathy that you are learning right now will serve you well in life.

Know this above everything; you are a very special, and very loved little boy. I pray you grow up knowing and believing that. I am so blessed that you are my son.

Love,
Your Momma

Tuesday, November 16, 2010

Diabetes by the numbers

What do you get when your daughter's BG readings are:

84 at 11:30 pm
85 at 12:30 am
and 109 via the meter, and 85 with double arrows down via the CGM at 3:30 am?

20g of carbs throughout the night and a morning BG of 259.

Crap-on-a-stick... stupid diabetes.

Monday, November 15, 2010

WDD in pictures. Plus a few words thrown in too

We had a nice WDD here in North Texas. We met up with the Houston clan for lunch and some fun on a carousel. Then we joined some other Moms from the local yahoo group at Dave & Busters (think grown-up Chuck E Cheese). We don't go to many of the get-togethers with the yahoo group, only because their kiddos are a lot older than Elise. But we had a great time and it was nice to meet some new people.

Pictures from yesterday:



nails painted blue? Check!



Mattias wore blue too!


Woo-hoo, carousel fun!



Elise, Sophie and Emma


Fred and Elise


Wearing the shirts from last year



More carousel


Jim and Super Nate!



Even Fred painted his nails



Family pic... Mattias is a little camera shy



Showing off our nails

All in all, a pretty good day. Numbers behaved (until last night), and Elise LOVED hanging out with all the kids. I feel like I dropped the ball with the shirts this year. I had so much fun getting the shirts printed up and shipped out to everyone, but I just didn't have the time to do it this time around. Hopefully next year, I will have my stuff together, and be able to take orders starting in the early summer.

Happy WDD everyone!