A diabetes flashback

I was reading through some stuff that I had written, but never posted. This one almost took my breath away. It was written over a year ago; at a time when I was feeling very alone and isolated. I think I had just discovered other D-blogs out there, but it was all still new to me. This post makes me want to cry, because those feelings are very ghost-like to me; not 100% here, but still hanging around, haunting me.

But it also shows me just how far I've come. I was at this same park I talk about in the post, just the other day. And not one of those bitter feelings came back. It's amazing how far we can travel in such a short time, even when we are weighed down by the heaviest of baggage:

Diabetes plays dirty. It will hit you when you're not looking, and does not have a problem striking where you're most vulnerable. In fact, it seems to wait until you're feeling pretty confident about yourself before it tries to KO you.

Yesterday, diabetes used me as it's own, personal punching bag; reminding me that I am not in charge here. We've been having some very bizarre BG numbers lately; I'm talking a level of 490, and then down to 50 in less than 4 hours. I know, weird.

Elise woke up pretty high yesterday morning, at 330 with a trace of ketones. We were supposed to go to our local rec center for some open gym time, something we do every Thursday. Elise loves playing with all the fun toys and other kids as much as I love getting to talk to grown-ups. But it wasn't to be. I gave Elise her insulin plus correction, she ate her breakfast and I made sure she drank a lot of water. My hope was if I checked her in an hour or so, the ketones would be gone and we could still go.

Now her ketones are small and her BG is at 490. And she is one unhappy little girl. She wants to go out for a walk, but how do you explain to an 18-month old that she's not allowed to do that right now? I try to make her drink more water, but when I offer her the cup, she throws it and starts to cry.

Fast forward to lunch and her BG is now 127. I guess the insulin is now kicking in. And the ketones are gone - Yay! She eats all her lunch and goes down for her nap. About 90 minutes later she's up and crying... and at 50. I give her 7g of carbs (anything more will take her BG sky-high), but she wants more. She's loopy, cranky and very upset. It takes about 30 minutes to calm her down. Finally her BG is at a good level.

Because she missed her morning play-time, I take her to a nearby park that is filled with laughing, screaming children. It's amazing that it's at times like these that I feel the most alone. I look at the other moms and envy how relaxed and at ease they are. I'm angry. Angry because I feel like nobody out there understands what I have to deal with. Angry because they can sit and chat with their friends without a care in the world. Angry because I am alone.

I watch Elise and worry that the exercise could make her drop low again. I tell myself to shut-up and enjoy this beautiful, sunny day with my daughter. The feelings of despair lurk, ready to pounce at any sign of weakness. Tears threaten, but I will them not to fall.

When my husband came home from work yesterday, I finally burst into tears. I had a good cry and moved on. I'm learning that this is what I need to do. I cannot dwell on it. Today is a new day; no ketones, good numbers, and we were able to go to story time at the library this morning. With a normal blood sugar level, Elise is happy and content.

If somebody had told me back then how much better I'd be doing a year later, I would have called them a liar. I still battle those feelings of despair and loneliness on an almost daily basis, but I am also thankful at how far I have come.

Hey, wanna see my belly?

Here I am at 16 weeks, and this little baby is definitely making her/himself known! Now that you've been blinded by the grotesque whiteness that is my never-sees-the-sun stomach, what do you think is cooking up in there... boy or girl?

I won't find out for another 4 weeks, but I'm curious as to what everyone thinks.

Why we do what we do

My heart is breaking for a family I have never met, yet am connected to because of a terrible disease. The Mom went into her son's room one morning, only to find he had passed away during the night, they think from a low blood sugar. His name was Tyler and he was only 14 years old. He, of course, had Type 1 Diabetes.

All my D-Mom/Dads already know what I'm about to write, so I mainly write this for my friends and family members who read my blog.

When I usually explain to the uninitiated all the work that goes into caring for Elise, the response is always surprise. Especially when I get to the part about how we get up at least twice a night to check her blood sugar.

I know it seems over the top to most people, but as Elise's Mom, I will do everything in my power to protect her from harm. And I know that I cannot be there 100% of the time. I know I cannot protect her from every evil in this world, but you can bet that I will bust my ass to try.

Let's look at it this way; when you get in your car, you either strap your kiddo into their car/booster seat, or make sure they put their seat belt on, right (let's disregard this is a matter of law for the moment)? Why do you do this? You're a safe driver. You obey all posted speed limits, you use caution, and pay attention to the road.

But what you can't control are other circumstances; drunk drivers, people who text and drive; and the ones who just plain suck at driving. You have no idea at what might happen next, so you do what you can to protect your child... it's just good ol' common sense, right?

As so many others have eloquently stated, a parent is NOT a pancreas. No matter how hard I try, I cannot replace that precious organ in Elise's body. I was not created to control and maintain blood sugars. All I can do is use my common sense and do my absolute best.

And this is why we weigh every carb Elise eats.

This is why we check her blood sugar 10-12 times a day, and at least twice a night.

This is why we don't leave Elise with anyone.

It's why Elise isn't in pre-school.

It's why I ALWAYS have a watchful eye on Elise.

It's why Elise comes with us on our date nights.

And why I carry a backpack full of strange gadgets and food. It may seem odd to you, but it might just save Elise's life one day.

It's why I am so tired, so distracted, so overprotective, so consumed and so frightened. Because stories like Tyler's happen. And they happen to people who do everything they can, just like we're doing. I mean, his Mom is an ER nurse.

And so, my heart is breaking. Not just for this family, but for all the other D-families out there who hear these stories. And the need to check their kiddos a little more often and hold them a little closer consumes them that much more.

Please God, let us find a cure soon.

Why my husband rocks

I need to brag on Fred for a moment. If you read my other blog, you know that both of us came down with food poisoning on Monday night. I caught the brunt of it, since I ate most of the food, and became very, very sick. I actually was in bed for about 33 hours, only leaving to go to the bathroom and... well, you know.

But Fred was sick too, and through the whole thing he; worked from home, took care of me, wrangled Elise, and did an amazing job managing her diabetes. Just check out these numbers:

7:29 am - 104
10:35 am - 65 (okay, so that one was a little low)
12:04 pm - 76*
2:40 pm - 76*
4:46 pm - 137
6:34 pm - 90
8:17 pm - 136

*Those numbers are lower than we like to see, but they came at a time when her BG typically starts going down and he was just a bit late getting Elise her lunch and snack.

My husband is THE superstar of superstars, and I am so thankful to be married to such an amazing guy. I was so sick that there was no way I would have been able to take care of Elise, and it is so nice to know I have such great back-up.

MWAH! Love you, Freddie!

Saying bye bye to boo boo

During all the craziness of finding out I was pregnant and my thyroid going haywire. Elise and I passed one very important milestone.

I made the decision to stop nursing her. I think I had been ready for awhile, but just didn't know how to stop.

When Elise was diagnosed at 12 months old, I was still nursing her 4 times a day. When we met with the dietitians in the hospital, I was told I would have to either stop, or start pumping and feed her my milk that way. I had just put away all my pumping supplies, and there was no way I was going to do it. I hated that contraption.

But there was no way I was going to stop nursing my baby just because they said so. She was still MY baby and I knew what was best for her. I could not cure her diabetes, but I could offer her one thing that nourished and soothed her.

It was hard to know how much she was getting, but we soon figured that it only affected her BG by about 30 points. I don't know why, but it always seemed to work out.

Then, one by one, I dropped a session, until only the bedtime one remained. When I found out I was pregnant, I knew I couldn't continue to nurse her (for my own health reasons). It took her about a week to get used to it, and her tears just about broke my heart. But life goes on and so did she.

I'm glad I made the decision to nurse her as long as I did. It's not for everyone, but it worked for us. I've said it before in another post about nursing, but I think it has contributed to Elise's overall good health. To this day, she has never even had an ear infection. And when we all came down with the Swine Flu in September, she fared the best out of all three of us!

It was definitely a sad milestone for me, but hopefully if all goes as planned, I'll be back at it again in September!

Recipes: Drinkable Yogurt

I was reading Leighann's blog post the other day on all the horrible unnecessary ingredients that are found in everyday products at the grocery store, and in several comments, people were lamenting the cost of things like yogurt that are made by companies that don't use high fructose corn syrup, or dyes.

And it got me thinking about the drinkable yogurt that I make for Elise. I know it's healthy because I know EXACTLY what I put into it, it's cheap (when I can find good prices on the fruit I use), and Elise LOVES it. I've never written down the exact amounts I use (I always weigh all the ingredients, I just never bother to remember), but I did when I made some today, so I could share it with you!

If you haven't checked out my post on making homemade yogurt, go here. It is so, so easy and will save you even more money. This is the yogurt I use when making this recipe.


Joanne's Strawberry/Banana Homemade Drinkable Yogurt
(all measurements are in weight grams... because that's what I use to figure out the carb factor)

What you need:
*approx. 450g of plain yogurt (carb factor = .05)
*200g strawberries - you can use fresh or frozen (carb factor = .08)
*85g bananas (carb factor = .20)
note: substitute any of your favourite fruit... Elise just loves strawberries and banana
1 1/2 Tbsp. agave nectar (total carbs = 24g cho)

Approx. carb factor when using the above measurements = .10

To Make:
*In a heavy-bottomed sauce pan, simmer the fruit on low/med in enough water so it covers the bottom of the pan (don't use too much water, it will dilute the taste). It usually takes about 10-15 minutes.
*When fruit is completely cooked down, add to yogurt and blend using a blender or hand blender. If you do this while the fruit mixture is still warm, it helps to thin out the yogurt, making it more liquidy.
*After completely blended, add agave (or other sweetener). I add it at this stage so I can judge the sweetness after each 1/2 Tbsp. I add. You may need more or less, depending on your taste buds.

Why it's so great:
*So easy to make.
*Will save you money on the store-bought stuff.
*Healthy, because you control what gets put into it
*You can also freeze this recipe and make yogurt popsicles... YUM!

I hope you enjoy this recipe as much as my family does!

Much ado about naptime

The winds of change are blowing here at our house, and Momma is not happy about it. It's looking like Elise might be on the verge of dropping her nap, which is troublesome on a few fronts.

Right now (since the stupid time change) she naps from about 3 pm - 5 pm. I actually put her down around 2-2:30, but it takes he awhile to settle down and fall asleep. These days she's falling asleep closer to 3:30-4:00. This presents a problem because the later she naps, the longer she's up that night. When she naps until 5:00, she's up until about 11:00 pm. We put her to bed at 9:00, but she tosses and turns for almost two hours!

The days she doesn't nap at all, she becomes a quivering puddle of Elise-goo at about 7:00 pm. It's enough to make you want to run and hide. Any other child you would say, great! Put her to bed at 7:00 and be done with it!

Except Elise isn't any other child, and because of when she eats dinner, it is impossible to put her to bed any earlier than 8:00.

We eat dinner at 5:00 (which in my opinion is sooooo early). Elise takes about an hour to finish everything, so she's done by 6:00. There is no way we can test her an hour later and get an accurate bedtime BG number. Not to mention giving her a bedtime snack and her insulin. It's too soon after her dinner.

We've also discovered that we have a very slooooow absorption rate with Elise's diluted Humalog. We find it peaks closer to about 3 hours after she gets it. I know, weird. But it's true. It's just not safe to give Elise her bedtime NPH that close to her dinnertime DH because it will drop her low while she sleeps, even with her snack.

So what is a mother to do? Drop the nap and just fight to keep her up until 8:30 (I get ulcers just thinking about it), or let her nap late and go to sleep late? I'm stumped.

Stupid diabetes... why do you have to make EVERYTHING so bloody hard?

ETA: Oh for the love of all that is good and holy, I went to get Elise up at 4:00 because it sounded like we had another failnap, and when I tried to open her door, I couldn't. She had fallen asleep right in front of it. I usually check her BG at 4:30, but I can't even get in her room. Unless of course I wake her up. I give up.

Team Elise Canada

This is for all my fellow Canucks (or peeps living in Canada) out there... Team Elise Canada will again be taking part in the JDRF walk on June 13, 2010 in Toronto.

If you have the means, we would love for you to donate. Just go to canada.teamelise.com (or click on the address to get there). And of course, if you live in the Toronto area, you can even be a part of Team Elise Canada, get your very own Team Elise shirt, AND meet Fred's super-cool family!

Below is out Team Elise Canada video (okay, it's really our video from last year's walk, with some extras tacked on at the beginning. It's still worth a look... Fred does a great job on our videos!)

Thank you for supporting Team Elise!

A night in the life

It's bedtime and her BG is 254. Not horribly high, but it is following the same pattern of the last few days. Semi-high at bedtime, high overnight and high in the morning. Changes on the horizon?

Usual bedtime insulin and snack. Down by 9:00 pm. Ninety minutes later I can still hear her tossing and turning so I go to check on her. She's awake and says she doesn't feel good. A quick check reveals an 88 on the meter. We give her 10g of carbs, plus some protein. She's happy with her unexpected snack and falls asleep within 20 minutes of consuming it.

Midnight. She's 157. Better, but not good enough. The alarm is set for 3:00 am.

3:00 check and she's 107. She should be going up. Why isn't she going up? She gets 5g more, and it's off to sleep again. After we set the alarm for 4:30 am.

Sleep? What is this sleep that you speak of? It's 4:30 and a 109 pops up on her meter. No more active insulin in her system, so why is she not higher? Sigh. This means another check in a few hours.

Last alarm of the morning. The hour of 6:00 am has come quickly, and with it brings a BG of 62. We think 10g should do. She eats and goes back to sleep for a few hours.

We look bleary-eyed at each other, the unasked questions swirling in our brains. Why? How? Huh? It doesn't matter. We shrug our shoulders and turn the page.

Today is a new day.

Housekeeping

If you look closely, you may have noticed a few changes around here. I mean, really closely. Mostly in the header of my blog.

Look! It's a new picture of Elise! And she's not a baby anymore! I also changed the tag line underneath my title from "having a baby with Type 1 Diabetes sucks, I'm learning to make it suck less" to what is there now. It's actually something I wrote in response to a comment left on my blog where the woman said (among other not-so-nice things), that Death of a Pancreas was a stupid name because it wasn't even correct.

It made me laugh then and still makes me laugh, so there you go.

Also a neat little thing, you can now get to my blog directly from www.deathofapancreas.com. Don't worry, the old link still works, it just re-directs to the new domain.

I'll also (hopefully) be changing the background soon. I always have such a hard time finding something I like, because I'm very picky. And also, I hate change. This actually might be enough change for me this month.

I do have one last request. Somehow I lost all my blog links (to my D-Mommas and other D-people) from my blog list. I'm not smart enough to figure out how to get it back, so the next easiest thing would be for everyone to leave me a comment on this post and that way I can link back to your blog. I don't have them saved in my favourites either. Lesson learned.

No, this isn't a cheap solicitation for comments, but I do love to hear from my peeps!

ETA: I would be remiss if I didn't thank my wonderful husband for setting me up with the new domain and the new header. Thanks Freddie!

Sugar vs. sugar-free

I grew up in a house where pretty much every meal was made from scratch. My Mom was not a big fan of sugary cereals, and I honestly cannot remember ever seeing pop in our fridge. There were always a lot of fresh fruits and veggies available. I was taught at a very early age what healthy eating looked like.

And it is something that has followed me into adulthood. Don't get me wrong, I have my junk food moments, but I tend to shop in mostly the outer perimeter of the grocery store, and try to stay away from the processed foods you find in the inner aisles.

And I have a list of no-no foods that I try to keep out of my house at all costs; high fructose corn syrup, all those crazy dyes you find in foods these days, enriched bleached flour, and every and all sugar substitutes.

By the way, this is just my own opinion for me and my family. If you use products with sugar substitutes and it works for you, then I'm glad it works for you. This post is not meant as a judgement, just merely my own little opinion that doesn't really count for much in the grand scheme of things.

I made the decision very early on in Elise's diagnosis that I would not use sugar-free products. I would never eat them myself, so why would I feed them to my child? Perhaps I'm lucky that Elise was diagnosed so young that she never developed a taste for pop, juice, jello or other sweet treats (because she had never had them!). In fact, I tried to give her a chocolate chip cookie the other day and she took one bite and said, "don't like it!"

This is how I look at foods that fall in to the sugar-free category; jello for example. There really isn't anything redeeming in jello. Even the full-sugar versions are not really good for you. Take out the sugar and replace it with aspartame, now it's doubly not good for you (just my opinion). I would rather Elise eat a small amount of the full-sugar version, then a lot of the sugar-free. Does that make sense?

I actually brought up the sugar/sugar-free issue with the NP at our endo's office (he happens to be a T1). All I asked him was for his opinion on sugar-free products. I didn't mention mine, as I didn't want to sway him. To my surprise, he pretty much said exactly what I wrote above. The funny thing is, he said it in a way like he was saying something that he wasn't supposed to.

I am not saying that I will never change my mind. I don't want Elise to grow up feeling different. So if at some point she decides she wants to try diet pop (at a reasonable age), I will let her. I also hope to properly equip her to be able to make "good" food choices.

I have a very sweet tooth, and happen to looooooove Pepsi. It's been even worse since I've been pregnant (I've been craving Pepsi Icees). But I gave up pop when I had Elise 2 1/2 years ago. I didn't want the caffeine to go through my breast milk, but I also realized something; there was nothing redeeming about drinking it. It added nothing good to my body. I try to make a good choice by drinking water instead.

I hope this post doesn't offend anybody. Again, this is just what works for my family. It's just something that's been tumbling around in my head for awhile, and I felt the need to write it down.

Hello win column

I have learned that diabetes is crazy mix of disappointments and victories. I don't like the word disappointment, but I like the word failure even less, so disappointment it is.

I try not to take the disappointments personally, but I hate when I guess a snack amount wrong. Or over/undershoot a carb amount to bring up a low. Or get the carb/insulin ratio wrong. Or I try a new recipe, carefully counting out all the carbs, and it ends up shooting Elise's BG through the roof for no apparent reason. Or I miss a low... the list could go on forever.

But I savour the victories. Perhaps it's the disappointment to victory ratio that makes them that much sweeter, but I swear if those victories could manifest themselves as a dewy meadow, I would run barefoot through them. No, naked. AND barefoot.

We had one such victory the other day when we went over to a friends house for dinner. I make probably THE best cheese fondue ever (and I'm so modest about it too!), and I love making it for my friends. Of course, these days, my house really needs to be declared a state of emergency, so hosting is out of the question.

So I took my fondue set on the road and went to work creating my dish of cheesy goodness. When it came time to eat, their kids joined in, but Elise had already eaten her dinner about 90 minutes prior. Of course she was curious as to what was going on, and REALLY wanted to take part in the "dip dip".

Fred and I just looked at each other, tired of all the crap that comes with diabetes. You could tell we were just worn out because we just shrugged our shoulders at each other and told Elise to "have at it". Although we just let her dip the apples and kept the bread out of her reach. No matter, she was happy.

Following the cheese, our hosts decided to break out some chocolate fondue. Again, we just looked at each other and said, "if she wants it, let's let her have it." The interesting part was we never even checked her. I think we were just so burned out at diabetes running our lives, we figured we'd deal with the repercussions of a high BG later.

After all this "extra" food, we figured her BG was going to be uber-high, but when we checked it at her snack time (about an hour after we ate), she rang in at 108. Whaaaaaaat? So we gave her her normal snack and insulin. She went off to play with our friends' kids until we left at about 11:00 pm.

When we got home we decided to check her one more time, and she was 129. I think we learned a valuable lesson that night. We can try like crazy to "control" Elise's diabetes, do everything "right", but it doesn't always work out as planned. Then there are the times we throw caution to the wind and sometimes it all works out, with no explanation as to why.

I believe we need to find the balance between the two, and firmly plant ourselves there. Living in either extreme is not good for my soul. The tricky part is figuring out what it looks like for us.

I'm happy to say that after a year and a half, we just might have found a place in which we can rest.

Interesting article, stupid comments

My husband sent me this link, and my interest was immediately piqued. It sounds like the policy that Nicole up in Canada has been working on to get changed.

But what saddened me were a lot of the comments that were left by people. I don't really have the energy to go into it, so instead I will let you read the article and comments for yourself. Click here to read it.

I'm hoping that some of you do have the energy to help educate these clearly misguided people, especially those who have kids in the school system.

Sorry for the lack of info on my part. This baby is sucking the life force out of me! I need to go lie down now.

Welcome to a new D-Mom

Remember Sara from my last post? Well, her sister (Mom to Joshua, the little guy Sara's post was written for) Shannon has joined the blogging world!

Check her story out at The New Normal Life... and what a story it is. Let's make her feel welcome and show her how awesome it is to be a part of a group that no one in their right mind would ever want to be part of!

(sorry if that last part makes no sense... pregnancy brain + exhaustion = me)

A must read

You have to go to Sara's blog and read this post. Well, you should read her blog anyway, because she's just the most adorable soon-to-be-newlywed ever!

But her post left me in tears. You see, she's an Aunt to a one year old little boy who was just diagnosed with diabetes, and she wrote the most beautiful letter to him.

My heart breaks for this family, but my soul is cheered at the same time. They are so blessed to have someone in their lives willing to stand with them and do battle with this disease.

Just make sure you have your kleenex ready when you do read it!

Notes on my last post

First off, thank you for all your sweet comments. Do you know HOW HARD it has been keeping this from you guys? Now you know reason #1 for me being MIA lately.

Reason #2 has been because I have been pretty sick. The pregnancy, combined with my thyroid stuff (which had - and still has - us concerned about complications), has really been kicking my butt. So far I've lost about 7 pounds this trimester, which is no small feat considering the fact that my thyroid levels are so low right now. Unfortunately, it doesn't seem to be letting up.

I also have very little energy to do anything extra these days. EVERYTHING takes so much effort. Thankfully I have an AMAZING husband who has been going the extra mile to help out.

We are very excited about this little one... thanks for being excited with us!

Here we go again...

A little video for your enjoyment...

Not that it's important...

We had our endo appointment today and we were both surprised and happy to see Elise's A1C come it at 7.1, which is only .1 higher than three months ago.

I know it's only a number.

I know we shouldn't judge ourselves based on it.

I know in my heart that we are doing the best job that we can.

It's just that it feels so stinkin' good to have some affirmation.

Things I learned about Diabetes this month... February edition

I didn't even notice it was a new month, let alone that we were 4 days into it. I need to buy myself a calendar! Since it was a short month, it will be a short list this time around!

-Snow equals LOW! Oh my, does it ever... the day we had 12 inches of snow I think I could have gotten away with not even giving Elise any insulin. It was CRAZY! Every time we went out to play, about 30 minutes later her BG would dip into the 50-60 range.

-Elise likes hot chocolate.

-You DO NOT have to follow the directions for making hot chocolate that are on the can. I used Tim Hortons hot chocolate, and it called for 2 Tbsp to 6 oz. of water (14g of carbs). I thought that sounded a little over the top, so I put about 1 Tbsp. in 6 oz. and it tasted just fine. Plus Elise has never had hot chocolate, so she doesn't know the difference. And BAM! I just cut the carb amount in half! That's important when her carb amount for snacks is only 15g.

Just some stuff

Have I told you guys how awesome you are lately? Well, you are. Your comments on my last post really helped me focus in on the issue... and Beth gave me some pretty interesting info. I've copied and pasted it from the comments section:

I don't know how it works in little ones, but some of the research speaks about the lack of production of Amylin along with insulin, which is a hunger-regulating hormone. For adults, there is now an injectable drug called Symlin which slows gastric emptying and helps create a feeling of fullness. I know a few adults who use Symlin and they say that until they started using it, they had a never-ending, constant sense of hunger (even after finishing a meal).

We have our endo appointment this Friday, and both Fred and I are pretty sure her A1C will be up from the 7.0 last time. I just keep telling myself that we have been through a lot of junk in the last 3 months (the full-strength insulin debacle, major growth spurts, illnesses), and it has nothing to do with how good of a job my husband and I are doing.

And keep telling myself, and keep telling myself...

What is it they say about being our own worst critic?