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 And now you know why I've been so quiet lately...

Yes, even babies can get type 1

Intuition. 

Mommy-gut. 

I just knew. 

Upon hearing that Elise was diagnosed at such a young age, I am often asked how we knew Elise had diabetes. The short answer is, at her 12 month well-child visit, the doctor did a urine test and found sugar. Elise had no symptoms except she didn't gain any weight between 9 and 12 months. A sign that something ominous was coming our way, but as a stand-alone symptom, nothing special. 

The long answer starts way before that. Probably closer to when she was 6 months old. Elise had a UTI. Then, strange fevers that would come and go every day. She would always start the day off normal, then her temperature would rise throughout the day until she was around 103 by bedtime. The next morning, everything would reset. 

She had another UTI. The fevers persisted. Thankfully, Elise's pediatrician didn't write me off as some crazy first-time mother whack-job. She believed me. Between the ages of 6 and 12 months, Elise had kidney ultrasounds, a CT scan, and a VCUG (a test using x-ray to determine if there are any bladder abnormalities). She was also seeing a pediatric Nephrologist (kidney doc). 

Everything kept coming back as normal. But my gut kept telling me that something was wrong. She wasn't the same little baby she had been just a few months before. She hardly ever smiled anymore. She was cranky. And those fevers just never went away. Still, there were none of the classic signs of type 1 diabetes. 

When she finally was diagnosed, she was in the very early stages; her fasting was in the 120s. Her A1C was 6.5. She wasn't even on insulin at first. But being vindicated has never been so heartbreaking.  

I often wonder how long it would have taken to recognize the tell-tale symptoms of type 1. Would her story, like so many of the babies, be one of almost losing her? As much as I hate the diagnosis, I am thankful we didn't have the added trauma of that. 

So why do I write this? Because sometimes, when I'm bored (which isn't all that often anymore as you can tell by my posting frequency), I look to see how people stumble onto my blog. And the phrases that make my heart skip a beat are ones like: 

Can babies have diabetes? 

Something is wrong with my baby 

Symptoms of diabetes

To those of you who find this post by googling something like the phrases above, I say this to you: Trust your gut. You know your child best. If your doctor scoffs at the notion of type 1, demand a test. It takes 5 seconds. If they won't, go to a pharmacy and buy a meter that comes with some strips. That $30 could save your child's life. Elise's pediatrician is amazing, but not all doctors are so willing to listen to the parents. 

And above all, if your child has any of the symptoms for type 1 diabetes; unexplained weight loss, unquenchable thirst, frequent urination, uncontrolled hunger, fatigue, nausea, stomach pain, blurred vision, rapid breathing or fruity-smelling breath, get them to the nearest ER as quickly as possible and ask them to test for type 1.

This post has been on my heart for awhile.  Ever since I read (yet another) story of a child passing away from undiagnosed type 1.  The parents sought help (multiple times), but the doctor ignored the symptoms, saying it was the flu.  This doesn't have to happen. It shouldn't.

Parents, know the symptoms.  And above all, trust yourselves.

I AM TYPE 1

Remember me? My name is Joanne and I used to blog here. I can't believe I haven't posted in a month. Busy is an understatement around here.

One of the projects Fred and I have been working on is a new video. The idea was actually born a few years ago while I lay in bed in the middle of the night trying to get back to sleep after treating a low.

My Canadian friends will recognize the concept... I "borrowed" it from a popular commercial called "The Rant" that was all the rage in Canada 14 years ago.

Two years from an idea to a finished product... We move fast around here. I hope you enjoy it and it brings a smile to your face.

https://www.youtube.com/watch?v=fBtsR1rDAqY

My diabetes life hack

Friday - Diabetes Life Hacks

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

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

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

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

I guess she's just really sensitive to carbs. 

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

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

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

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

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

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

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

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

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

Mashed potatoes generally run between .18 and .22.

Brown rice? .23.

Vanilla ice cream?  .23 to .25.

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

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

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

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

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

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

Mantras and more

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

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

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

I hope they inspire you as well.

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

-Nelson Mandela

Type 1 and Mondays always bring me down

Wednesday - What Brings me Down
May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes.  What things can make dealing with diabetes an emotional issue for you/and your loved one, and how do you cope?

It happened a few weeks ago, I was holding a sobbing Elise as her tears soaked through my shirt.  We had had a run of crazy numbers over the past couple days; highs crashing to lows, sustained lows that needed copious carbs just to keep her at 80, and sticky highs that would not budge no matter how much insulin we poured into her.

"I just hate this so much, Mama!  I don't want to live this way... it's too hard!  Everything hurts and I hate this!  I hate diabetes... having diabetes is AWFUL!"

I just held her and let her vent. At one point I said, "I know Elise.  I know."  And what I meant by that is I understand that it's awful for her.  I understand that she hates it.

But she jumped all over my choice of words and let me have it, "But you DON'T know.  You'll NEVER know.  You're not the one with diabetes, I AM!"

Ouch.  

But she's right.

I hate the emotional side of this disease. I hate that I can't fix it, like I can a low with sugar, or a high with insulin.  I hate that people just don't understand the toll this disease takes on PWD and CWD emotionally. This by far is the hardest thing about type 1.

For now all I can do is hold her when she cries, listen and try to take on as much of the burden as I can.

I wish it were more.

Elise's Poetry Slam

Tuesday - Poetry Tuesday
Write a poem, rhyme, ballad, haiku, or any other form of poetry about diabetes.  After you've posted it on your blog, share it on the No Sugar Added Poetry page on TuDiabetes, and read what others have shared there as well.

I used to love writing poetry... not only because I lacked the attention span to write anything longer, but poetry was the perfect outlet for my first-world angst.  But I knew this topic would be perfect one for Elise to make her blogging debut; right now they're studying poetry at school, and she can pen some pretty epic quatrains.

The following is an Elise original.  I love the non-sequitur ending.

My Diabetes

Diabetes is hard to beat

But I can eat it like meat

Diabetes is strong,

But I am stronger

My CGM reads the numbers

Or else it will be a bummer

My monitor tells us the number

Pods are like turtle shells.

Here's my contribution:

Roses are red

Christmas trees are sappy

Diabetes + Strep throat + antibiotics + strep rash + hives

Are all really, really, really crappy

Starfish

So. It's been a little quiet around here lately.  Lots to write and zero time to do it.  I was hoping that the fifth annual Dblog Week would be the kick in the pants I needed.  Let's see if I can make it work...



Monday - Change the World Let’s kick off Diabetes Blog Week by talking about the diabetes causes and issues that really get us fired up. Are you passionate about 504 plans and school safety? Do diabetes misconceptions irk you? Do you fight for CGM coverage for Medicare patients, SDP funding, or test strip accuracy? Do you work hard at creating diabetes connections and bringing support? Whether or not you “formally” advocate for any cause, share the issues that are important to you.

This one.  This. That word... advocate.  I'm stuck on that.  The problem is, I don't feel like one.  I look around the DOC and see everything that is being done; the Strip Safely Campaign, Children's Congress, Spare a rose, Save a Child... I know there are more, right now my brain is just a little tired.  

What I love about the DOC is their ability to start a grassroots campaign and run with it.  And I love how quickly everyone hops aboard.  I will usually hear about it and say, "Self... you need to look into that when you have some time."  My problem is that last word; time.  There just isn't enough of it.

But instead of beating myself up about my lack of involvement, I do what I can, where I can.  And that amounts to speaking at a newly diagnosed class at our Children's Hospital once a month.

Because reaching out to families that may be feeling like they are drowning is my passion.   Fred and I didn't have that at the beginning, and it was a very dark time for us.  So I try to be a tiny light in their new, strange world.  I tell them our story; how far we have come, how amazing Elise is, and I can usually get through it without shedding a tear these days. 

Interestingly enough, I usually see quite a few tears in the eyes of the people I'm speaking to.  And when they come up to me later, a lot of them tell me that they are tears of relief, knowing that someone has been there and come out the other side just fine.

It may not be a lot. I may not be blazing new trails and making my voice heard across the country, but for now, it's enough.  I'm making the difference where I can, and maybe one day it will lead to more, maybe not. But if it helps even one person, it's enough.  

Just like the starfish.

SWAG the Bunny

I never claimed to be a cake decorator, nevertheless I'm pretty pleased with my first attempt (with Elise's help).  

Meet SWAG, the Easter Bunny.  Made with fresh strawberry icing and white cake, the carb amount is anyone's guess. 

But we will worry about that afterwards.  For now, Happy Easter and lovely BGs to you all!

The Ugly Underneath

A few weekends ago, Fred took Elise to her very first Daddy/Daughter prom. She was so excited for the event; a pretty party dress, shoes with a hint of a heel (her first!), body spray with sparkles, and some eye glitter and lip gloss. She didn't want to look in the mirror until she was all done up. The results had her uttering a hushed, "oooohhhhhhhhh!" As she twirled and curtsied in front on the full length mirror.

(For the record, she must get it from Fred... I have never twirled or curtsied in my life and the thought of putting on a dress at her age would have made me run, screaming.)

There was a small party at a neighbour's house before all the dads and daughters left.  There were appetizers, the girls admired one another, and we took pictures.  Like the one above.

To the casual observer, the little girl does not appear to be enjoying herself very much. She looks like she doesn't even want to be there. And that's because they are missing the ugly underneath.

The ugliness of a blood sugar that was 356.

And a CGM that had been reading HIGH most of the afternoon.

The awfulenss that was all the other little girls drinking sparkling grape juice in fancy cups, while I only let Elise have a tiny sip, just to try.

And even though I encouraged her to have a chocolate covered strawberry (high BG be damned), she didn't want to because she knew she was high and didn't want to go higher.

The ugly underneath of diabetes is not only how it can damage physically, but also so heart-breakingly emotionally too.  After awhile, you kind of grow hardened to the BG checks and pump changes... it's all a part of a routine, like brushing your teeth. 

But what you never get accustomed to is how this disease pierces your heart when it wrecks havoc on the emotions, and you're the only one who sees the tiny tears slip down your child's face as she tries to sit unnoticed in a corner. It just about breaks me.

But at the end of the night, while her CGM from that evening looked like the world's most vomit-inducing roller-coaster, she still declared the night, "pretty much the best time ever in my life."

Because the beautiful underneath that people also miss is just how strong and incredible these kids are.