The Highs and the Lows..

Now don’t worry, this post is not about the highs and lows of our Christmas break,  haha.  🙂  No, this post is about the highs and lows of living with diabetes… literally and figuratively.   Oh Sarah, December was a crazy month for her and her diabetes.

She’s actually had diabetes for over a year now as she was diagnosed December 20th 2012 (a day we did NOT celebrate) and it’s become a part of our life now, but it’s something we can never become complacent about.   Thankfully – and this is totally God’s goodness towards us –  until the beginning of this December, taking care of Sarah was fairly straightforward and this was because she was still in what is called the “honeymoon phase” of diabetes.

The honeymoon phase is when you still have some Beta cells (insulin producers) left in your pancreas that your immune system hasn’t gotten around to destroying yet.   Because your body can still make a little bit of insulin, it helps keep your blood glucose (or ‘blood sugar’ as we call it here) on a more even keel.   In Sarah’s case, we could always count on her body leveling her out at night.  If she went to bed with a high blood sugar, in the morning she would be back to normal, and she never ever woke up with low blood sugar.  So not only was she still producing a big of insulin, her body was still managing her glucagon well.   Glucagon  is a hormone made by the Alpha cells in your pancreas, and it’s function in the opposite of insulin, as it’s job is to bring up the glucose levels in your blood so that they never get too low.  Some of you might have experienced some mild hypoglycemia… where you feel all week and shaky when you’ve gotten really really hungry, well that’s when glucagon is supposed to go into action and tell your liver to release more sugar into your bloodstream.    When you have diabetes, even though the body doesn’t destroy your Alpha cells on its crazy auto-immune rampage, once your Beta cells aren’t functioning, your body doesn’t seem to be able to manage glucagon either.  So then hypoglycemia becomes a huge problem for diabetics because your body doesn’t stop it.   If you have too much insulin in your blood and not enough sugar then you can go low,  and if it gets too low, you can slip into a coma or even have a seizure.  Not good.

So like I said, up until December we were just going along, managing Sarah and keeping her fairly steady,  when all of a sudden at the beginning of the month it seemed very clear that Sarah was leaving the honeymoon period, and fast.    Her blood sugar levels were all over the place, and often really high and weren’t coming down at night like before.   This was frustrating because we thought at first that Sarah was just sneaking food and when she has high blood sugar she is MISERABLE!    And when you have four kids, when one is miserable they all are miserable it affects everyone.

When we went to the diabetes clinic at the beginning of December they saw her numbers and upped all her insulin as well as adding in some night-time insulin to help bring her down at night.  So this meant she had to start a fourth needle in the day (poor kid), but it still wasn’t helping.  So with the help on the nurse, we upped her insulin again, and then a week or so later had to up a third time, until finally we started seeing some better numbers again.    But then Sarah started getting lows,  where she would have too much insulin in her blood and her blood sugar would go down to low…  and since these lows were new for us, they were a bit disconcerting and rather scary.   Thankfully she is pretty good about telling us when she is feeling low, but on Boxing Day, when we went to my parents place, Sarah wouldn’t get out of the car.  We thought she was just playing shy or being a pickle, so we just left her there.  But after a few minute I went out to try to get her to come in and she wouldn’t.  We thought about just leaving her and were getting kind of frustrated that she was acting so weird when Jason thought he better check her blood and that’s when we found out she was low… really really low…. ACK!!!    Both the highs and lows can really affect Sarah’s behaviour and as a parent it’s going to be tough trying to separate her behaviour from the blood sugar side effects, especially as she gets older.

So things aren’t easy, but we still have Sarah with us and that’s enough.  And like we said before, Jason and I just are so grateful to God that for most of the year Sarah’s diabetes wasn’t an issue, that we could worry about Ava without having to worry about Sarah at the same time.  I know that we often like to say that God doesn’t give us more than we can handle, but I don’t really agree with that.  To quote a pastor whose blog I follow –   The Blazing Center –  Steven Altrogge said,  “God burdens us beyond our strength so that we will be forced to utterly and completely depend on him.”  a statement which I completely agree with.

People have so many times told us how strong we are, and I have to say over and over again… nope, it’s not us.  We’re not strong, we’re weak.  But we know the one who is strong and who is holding us in His hands, and we know that we can depend on Him utterly, even in death, even in diabetes.

Amen!

Psalm 55:22

22 Cast your burden on the Lord,
and he will sustain you;

he will never permit
the righteous to be moved.

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10 things I’ve learned about diabetes

It makes me kinda laugh to think that if we didn’t have Ava – whose troubles have really taken over this blog – I probably would be blogging every day about Sarah and her diabetes!    And I’ve been working on this post for a while, because I really want to share with everyone some info about Type 1 diabetes.

We are definitely still in the learning phase here on how to live and care for Sarah,  and I will say  again that Diabetes is a HUGE learning curve.    And I can’t say enough how grateful I am to Jason for taking on the burden of care for Sarah after her diagnosis.    Sarah was diagnosed December 20th and I moved into the hospital with Ava January 2nd, and so he had to  take it on and fly solo, and he has and still is doing an amazing job.

And even though diabetes is manageable and diabetics can lead a normal life,  Jason and I will both tell you that even now,  Sarah’s diabetes diagnosis really hurts.    It’s really hard as a parent to have a perfectly healthy normal child and then be told that she will be dealing with something for the rest of her life… it won’t ever go away.   And it has changed our life.  Now Sarah has to check her blood glucose level 4 times a day.  Get a needle before breakfast and another before dinner and snacks have to be regulated by time and the amount of carbs.  It’s a bit time-consuming and it does make us long for our pre-diabetes days, but on the other hand, we can be grateful that diabetes is something that can be controlled and that Sarah isn’t sick.

And the hospitals do make sure that you as the parent receive a ton of training.  It’s just that Jason has done most of the training and I haven’t, and I need to go and do it.  When I have the time of course.

But I’ve learned some basic things so far, and I’m going to share those things with you (whether you want to or not :))    So here goes…

1.   First off…  type 1 diabetes and type 2 diabetes are two completely different diseases and as one of our diabetes nurses said,  really should have two different names.

2.   As you probably already know, Type 2 diabetes more often happens later in life and is a disease where your pancreas either doesn’t produce enough insulin, or your body is not effectively using the insulin it has.   It is often managed with diet and exercise,  or pills to slap your pancreas into producing more insulin.    If these measures don’t bring down your blood glucose levels, you may have to take insulin.

3. Type 1 diabetes (which is what Sarah has) results from your body attacking and destroying your beta cells which are formed in the pancreas and produce insulin.  So it’s really an autoimmune disease as your body has for some reason decided that its own beta cells are the enemy and must be destroyed.   And unfortunately it’s  still a mystery as to why this happens.

4.  Sarah didn’t do anything that caused her to get diabetes.   It wasn’t her diet or anything like that.  She may have had some genetic component that made her more susceptible, but then they really think there is some-sort of unknown environmental factor that triggers type 1.    One of the endocrinologist at Sick Kids said that they often see it appear in children after period’s of stress, and Sarah was stressed back in November that we were going to be leaving to go to Toronto to have Ava, but did that cause it?   Probably not.

5.  Because type 1 diabetics are completely insulin dependant, they don’t manage their disease with their diet.  They can still eat everything, and should eat a large variety of foods just like everyone else.

6.  Type 1 Diabetics count carbohydrates in their food – not sugars.   Here is Wikipedia’s definition of a carb.. “the term carbohydrate often means any food that is particularly rich in the complex carbohydrate starch (such as cerealsbread, and pasta) or simple carbohydrates, such as sugar (found in candyjams, and desserts).”   Carbohydrates are broken down in your body into glucose – which is a readily available source of energy for your body’s cells.   But to get at the glucose, your body needs insulin, a hormone produced by your body.   So when a diabetic looks at packaged food, they don’t look at the sugar content, they look at the carbohydrate content, as it’s the carbs that will turn into glucose in their blood stream and affect their blood sugar levels.    (Don’t want to get too technical, but we can actually subtract fiber grams from the total carbs.  So for instance, 1/2 cup of blackberries has 7 carbs, but 4 grams of fiber.  So we subtract the fiber from the carbs, now that 1/2 cup blackberries only counts as 3 grams of carbs…  whereas one small arrowroot cookie is about 5 carbs.   That’s why it does pay to eat healthier carbs more often as you get more bang for your buck.)

7.  Insulin – as it was described to us – is the train that allows the glucose in your blood-stream to be used by your body.   Without insulin, your body is deprived of its easiest form of energy.  So diabetics must inject insulin into their body so that their body can use the glucose, which is vital for survival.

8.  If you are taking insulin injections like Sarah (as opposed to being on an insulin pump) and you are just learning like us – you must eat the same number of carbohydrates at each meal, including snacks, so you know how much insulin to give.   Jason has met with the dietician and she has given us a list of how many carbs Sarah can eat at each meal and snacks.   So Sarah can have 35 carbs at breakfast, 20 for snack, 50 for lunch and so on.    And these meals must be spaced apart at certain intervals.   And counting carbs can be tricky!  Jason is better at it than I am, but sometimes it’s a guessing game,  especially if you aren’t exactly sure how many carbs are in a recipe or food item.

9.   Diabetics must work at keeping their blood sugar within a certain range.   For Sarah – because she is young – we have a broad range of keeping her blood glucose levels between 5 and 10.   Below 5 is considered low, and should be treated with juice or another form of sugar to bring her sugar back up.   If her sugars are consistently higher than 10 three times in a row , we would have to start checking her urine for ketones… but I’ll get into that later. 🙂

10 . If you take Sarah out one morning and forget her diabetes kit and forget to bring along her morning snack, you can lose your mommy badge… ha!   Don’t laugh, it’s happened and I’m not proud.  But it just goes to show that for me caring for Sarah hasn’t become second nature yet.  Thankfully Sarah is in what they call the “honeymoon” period right now.   Her body hasn’t completely destroyed all her beta cells and she is actually making a tiny bit of insulin for herself.  This makes it a little bit easier to regulate her blood glucose levels right now, but still… I have to learn to think about Sarah’s diabetes all the time and even though I can get distracted by Ava, I can’t forget that Sarah depends us to keep her blood glucose levels in range.

And one of the biggest things that we’ve learned is that once again we are surrounded by people who are supporting us, and are caring for us even in this.  From Jason’s mom who has picked up the carb counting and needle giving with ease, to our neighbour Sheila who helps out and will feed  Sarah and give her her needles if we are away.   And her teacher Melinda, who has cheerfully taken on the burden of care for her at school.    And then there is our friend Dave who was also diagnosed with diabetes when he was young, who stopped by to meet Sarah and bring her a gift and chat with us.    It’s been a huge blessing.

When we sit down and think about Sarah having diabetes, it still makes us cry, but by God’s grace once again we’re getting through, which really is the story of our life right now.   We are so thankful for God’s goodness.

And now I hope that you don’t mind that I’ve shared this and hopefully you’ve  learned something too.