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Guesswork.

People with Type 1 diabetes are constantly predicting, guessing, second-guessing, and evaluating blood glucose numbers. Nothing is ever written in stone.

Someone once told me that Type 1 diabetes is the thinking man’s disease, and that is because you are constantly thinking about numbers: blood glucose numbers, carbohydrate numbers, highs, lows, and the in-betweens. Some days are predictable, but even those are not predictable before hand. You only know it was a good day for numbers after you look back and see what kind of numbers there were. You can’t predict a day where every check will be in range, they just happen. They are great days when they do happen, but you never know when they will occur.

Then there are the days that seem like they are going to be predictable, and they make a u-turn and flip the other way. Those u-turn days are where the thinking, guessing, second-guessing, and evaluating come into play. Let me walk you through our day at the water park including my thoughts (IN BOLD) about the day. Be warned, you may get tired reading through my thoughts if you haven’t had your morning coffee yet.

Wake up the day of the water park, great number 103. Great, good start to the day, maybe our day will stay on track. Let me pack extra candy because with all the activity at the water park we may have some lows.

Arrive at the water park less than 2 hours after breakfast, great number 161. Great, still a good start. Let’s have a free snack to build up strength without adding any carbs and insulin. Snack on hard boiled eggs (it was the day after Easter after all).

Getting ready to swim almost 2 hours after last check. Long lines at the water park. Great number again, 148. That number is actually a little high for 4 hours after breakfast, but with the extra activity he may need the tiny bit higher number to hold him steady while he is playing so hard.

About 1 1/2 hours later check sugar again getting ready to eat lunch, ut oh, number not so good, 228. Ok, we are going up, maybe it’s basal? Maybe he needs an adjustment tomorrow when we are not here with his basal rate, should not be going up for no reason, especially with so much activity?
Correct the number and pre-bolus for pizza. Pizza is 75 carbs. I already looked it up on the internet the day before so I knew ahead of time what he was going to eat and how much insulin he would need.

About 1 hour after eating, not a time one usually checks sugar, and his number is 242. I’m ok with that number, he has over 1 unit of insulin working and he is going to be really active with his favorite cousin. Let that number go and check in while and see what is going on.

Another 1 1/2 hours go by, he must be going low by  now. He is crazy active, running around, jumping, going down water slides, let me grab him and check to see if he needs some sugar. Check sugar, 385!!! Ok, this is not good. Not good at all. What is going on? Could it be basal? Did I under bolus for that pizza? Maybe the nutritional information on the website was wrong, maybe I didn’t give enough insulin for the pizza. Correct, double check that he is feeling ok otherwise and move on.

Another 1 1/2 hours go by, he has to be in range by now, the boy has over 2 units of insulin coursing through his tiny body and he is having the time of his life. Expelling so much energy, climbing 5 flights of steps over and over to get to the highest water slide. Check sugar, 355!!!! Ok, this is awful. What is going on? Maybe his site is coming loose with all the water and I can’t see that it is not in correctly? Maybe it is basal? Maybe his adrenaline is keeping him up? Maybe he is getting sick, sometimes we see highs before he gets sick. Maybe this, maybe that? Ugh!!!

Ok, quickly go and take a shower, will reconnect pump after shower after I get a good look at the site. Check site out, it is coming up on the edges, but doesn’t appear to be affecting the actual cannula (part where insulin goes in). Change the site immediately and reconnect quickly. Do a big correction for that 355. Also, prebolus for dinner.

Check again in 1 1/2 hours, number down to 263. Ok, good sign. Insulin definitely working now, he’s even lower than before he ate dinner, so that original number is on it’s way down. Great!!

Check again in 1 1/2 hours, number down to 113. Looking good. Possibly a little too low, but not much insulin from the bolus working anymore, going straight on basal. Should remain pretty steady at this point.

Check again 45 minutes later, just had a feeling. Number down to 89. Aahh, not so good. Numbers below 100 at night (10:46 pm) scare me a little. Let me give him a glucose tab (4 carbs) just to turn this around. Maybe dinner insulin worked a little longer than normal? Maybe the correction was a little too much? Maybe the activity from today is catching up with him?

Check again 45 minutes later, another feeling. NUMBER DOWN TO 33!!!!!!! CRAP!! TREAT! Get this number up! Treat with 32 carbs.

Check again 1 hour later (12:30am), great number 136. Whew!

Check again a couple of  hours later, great number 127. Thank goodness basal held steady like it does most nights. Guess his night time basals are good. Now what was up with the day? Better check today to make sure basals and ratios are good.

This is one day in the life of living with Type 1 diabetes. Now you can plainly see the thinking man’s disease statement, you never stop thinking when you are dealing with type 1 diabetes. It is like Type 1 diabetes holds the key to a puzzle that you can never possibly solve, yet you wake up everyday ready to play the game.

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Compare sugarfree and regular

People with Type 1 diabetes, especially children, do not need sugar free candy for Easter (or whenever). Sugar free usually has carbs and ANY carbs need insulin. The real deal is better tasting anyway.

Compare the following nutritional information for two of the same candies, one sugar free and one that is not.

Russell Stover SUGARFREE Toffee Squares

Nutrition Facts Calories 210(878 kJ)  % DV 1 Total Fat 16g 25% Sat. Fat 9g 45% Trans Fat 0g   Cholesterol 25mg 8% Sodium 140mg 6% Total Carbs. 24g 8% Dietary Fiber 1g 4% Sugars 0g   Protein 2g   Calcium 0mg

Russell Stover NOT sugar free REGULAR toffee squares

Nutrition Facts Calories 250(1045 kJ)  % DV 1 Total Fat 16g 25% Sat. Fat 10g 50% Trans Fat 0g   Cholesterol 20mg 7% Sodium 190mg 8% Total Carbs. 24g 8% Dietary Fiber 1g 4% Sugars 23g   Protein 2g   Calcium 40mg

As you can plainly see, the carb count is EXACTLY THE SAME  for both candies. Let me take a minute and explain why this is important. People with Type 1 diabetes count carbs to determine how much insulin they are required to take. We do not count sugars. We count carbs. Carbs are just one set of numbers that are constanly running through our minds.

Let me use my son as example to explain how his intake of carbs dictates the amount of insulin he receives. For breakfast my son gets 1 unit of insulin for every 21 carbs that he eats. So if he eats a bowl of Frosted Flakes, 28 carbs, and a mug of hot cocoa, 10 carbs, he will have eaten 38 carbs, so he will get just a little under 2 units of insulin for that meal.

Now lets look at the candy’s nutritional information above. My son gets 1 unit of insulin for 25 carbs for his afternoon snack. Let’s say today he asks for a piece of candy. Normally I don’t give any candy as a snack but for this fake example I am happy to give him candy. If my son eats one piece of SUGARFREE candy from above he would have eaten 24 carbs and would get .95 units of insulin. If my son eats one piece of NON sugarfree REGULAR candy from above he would have eaten 24 carbs and would still get .95 units of insulin.

See what I mean? A carb is a carb is a carb is what we say in this house. We have to cover carbs with insulin. Read the labels you will be surprised.

So this Easter, or Halloween, or Christmas, or Arbor Day, or whatever day, PLEASE do not give any child with Type 1 diabetes sugar free candy. Now you know it is not any better, it is not a free candy, it still needs to be covered with insulin. And if you are truthful, you know in your heart, the real deal takes much much better.

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Family disease

While there may be one or two people in your family with a Type 1 diabetes diagnosis, it affects every single person in that family. It becomes a family disease.

Ever since my son was diagnosed, I talk about his Type 1 diabetes in terms of we. When I mention checking his blood sugar in conversation I always say, ‘we check our sugar…” Of course, I am not physically checking my sugar every time he checks his, but in my own miniscule way, by saying we instead of he, I feel I am taking some of the weight of this disease off of my son’s shoulders. In a perfect world, I would take this disease from him and carry the burden all myself, but as I can’t do that, I share whatever part of this disease that I can.

It doesn’t stop with blood sugar checks either. I use the word we when talking about anything with diabetes. If my son’s insulin pump site needs to be changed rather quickly at school, I will grab my young daughter and tell her, “Hurry we need to go to school we need a site change.” Now my three year old (soon to be four) knows full well that she does not have Type 1 diabetes, yet she never questions why she should be included in this family site change. She knows we own this disease, it has become part of our family. We are a family with Type 1 diabetes.

This really hit home today when my daughter who does not have Type 1 diabetes read her brother’s meter. She asked what number was on the meter. I told her 123. She said in the sweetest three year old, soon to be four year old voice, “Oh, that’s a good number,” with a huge smile on her face. I didn’t know whether I would explode with pride over how bright and concerned she is regarding Type 1 diabetes, or whether I would fall to my knees gathering up the pieces of my broken heart realizing how smart and concerned she is regarding Type 1 diabetes.

I don’t check my sugar 12 times a day like my son.
I don’t give myself insulin every single time I eat a carb.
I don’t get shaky when my number drops too low.
I don’t get cranky when my number is too high.

None of these things happen to me because I don’t have Type 1 diabetes. All of these happen to my son, he’s the hero living with and defeating Type 1 diabetes everyday. He’s the one, yet since that fateful day in July of 2007, the day Type 1 diabetes bombarded our home, it became part of all of us. No one else in our home has Type 1 diabetes, but in reality we all have it. It is our family disease.