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People with Type 1 diabetes, and their caregivers, are not given the option of defeating this disease, the magnitude of this disease’s strength is very humbling.

If Type 1 diabetes were a person it would be that guy or girl in high school that you thought was your friend. You hung out together, ate lunch together, studied together, even slept over each other’s houses. You talked about going to the Prom together. Then your friend tells you they are not going to the Prom. They’d rather skip it this year. Then you come to find out that although they told you they were not going to the prom, what they really meant was that they were just not going to the prom with you. Quite humbling to have someone you thought you understood, someone you spent countless hours a day with, someone who became an integral part of your life, to just turn the tables and leave you in the dust.

That is how it is to live with Type 1 diabetes. I read everything I can about how to understand and help my son live with Type 1 diabetes. I think about diabetes and numbers all the time. Numbers permeate my thoughts. Even my 3 year old daughter without diabetes will ask me, “Is that a good number?” when I am changing the channel for her. Type 1 diabetes goes to Shop Rite with me, it comes to the park, the pool, and the mall. Sometimes, for a brief moment, I actually get bold enough and feel like I understand my son’s disease and then Wham! diabetes decides to remind me that we are not in sync, that I really don’t know this disease, and even though it accompanies us in and out of our days and nights, we are certainly not friends.

For several days now my son’s glucose numbers have been awesome. We have seen only in range numbers. He was feeling fantastic. I started to puff out my chest a little actually believing that I have a handle on all of this diabetes stuff. That’s just when diabetes decides to drop me down a few pegs, deflate my chest just a little and throws us a couple of unexplained numbers in the 300s.

When my son’s numbers are out of range he does not feel fantastic. He doesn’t feel sick, and thankfully because we are on top of it with all the testing we do, he does not remain out of range for long, but still two high numbers in a row do make him cranky, irritable, and sometimes angry. It is not him, it is the high numbers bothering his body. He wants to feel well, but the numbers take a longer time to come down when they are higher, so now we have to wait. We make the corrections that are required to bring him into range, but we have to wait for the insulin to do it’s job and bring those numbers down.

That is when having Type 1 diabetes and being the caregiver of a five year old with Type 1 becomes very humbling. We are at the mercy of the insulin and it’s ability to work properly and quickly so that my son can feel like himself. I am not in control at this time. I am not friends with this awful disease. I am at the mercy of insulin to make my son feel better. I am at the mercy of diabetes that it plays the game correctly and does not throw in another wrench like ketones which would make my son very sick.

It is very humbling to have something like a disease take away even a few hours of my son’s otherwise perfectly happy, healthy five year old life.

Living with and caring for Type 1 diabetes is a 24 hour 7 day a week commitment.

Many people, especially people that are following this blog, are learning that people with Type 1 diabetes must test themselves many, many times a day. They test in the morning, late morning, afternoon, late afternoon, evening, late evening, and what may come as a surprise to most of you is they also test through the night. Now of course, my 5 year old son does not wake up to test himself in the middle of the night, it is me, the mom, that does all the late nite testing.

My son gets tested two hours after his bedtime snack. He is already sleeping at this point, so after 19 months of testing, I have it down to a science. I grab my tiny flashlight, get the meter and poker ready to go, gently take his hand from under the covers, then quickly and quietly prick his finger, test the blood, and slink out of the room into the light so I can see the number properly.

If his number is where I expect it to be, I know he is good until I go to bed two hours later, and really that’s for my piece of mind. When I go to bed I want to know where his number is so I can cut down on the surprises in the middle of the night.

If his number is not where I expect it to be, it can either be too high or too low, then I have to make a decision and do something. If his number is too high, I can correct with insulin. Now that he is wearing an insulin pump (future blog explanation coming) giving insulin while he is sleeping is easy, much easier than giving a shot to a sleeping 5 year old.

If his number is too low, I have to make a decision of how many carbs to try to feed this sleeping little boy. If he’s not too low, I can usually get away with putting a glucose tab in his mouth while whispering in his ear, “Chew baby, chew baby,” and by some miracle he will begin chewing and finally swallow the glucose tab.

If his number is really low, I have to get him to drink a special glucose drink, that brings his sugar up fast. That involves a little more work. I have to call his dad up, to help me hoist up my sleeping son, and while I am holding him, I put the straw in his mouth while whispering in his ear, “Drink baby, drink baby,” and by the same miracle he begins to drink.

All of these situations require me to test him again in 30 minutes. So, now my baby has another 30 minutes to rest before I slink back into the room, flashlight and meter in hand to see whether his sugar is doing want I want, going down if the number was high, and going up if the number was low.

Grant it, my son does not officially wake up during these tests and ‘snacks’, but seriously who can rest when someone is pulling at your fingers or shoving sugar in your mouth.

Just to give a time frame, it is now about 10:30pm in this nightly dance, and my son would have been tested a minimum of one time, but more likely three times, and mind you, he is sleeping. He does have to get up for Kindergarten the next day. He is a busy boy, and having Type 1 diabetes is not going to stop that.

He will get tested again around 3:00am, give or take, to see how the numbers are holding. If it is a good night, the number is right where we want it, and everyone can rest a little more until morning. If the number is too high or too low, the same things starts again. Insulin to make the number come down, sugar to make the number go up.

There is a joke in this house that the only difference between say 3:20pm and 3:20am is that it is dark outside for one of the 3:20s.

Type 1 diabetes never sleeps. The people that care for it, or live with it, get some rest in between, but the next glucose check is right around the corner regardless of whether it is day or night.

Although people living with type 1 diabetes all have the same autoimmune disease, the ‘how to’ of living with diabetes are different for each and every person.

Sure, every person diagnosed with type 1 diabetes is on insulin, but how they get that insulin and what type differ for every person. Each person must have a basal insulin, that keeps their body steady without eating, and a fast acting insulin which covers carbs and high glucose numbers. The following is the most thorough, yet shortest, explanation of the different types of insulin made available to all people with type 1 diabetes.

• Mealtime insulins: Mealtime insulins include rapid acting and short-acting insulins. Rapid-acting insulin starts very quickly and works for the shortest time. Short-acting insulin starts more slowly and works longer than rapid-acting insulin.
• Basal insulins: Basal insulins include intermediate acting and long acting. These start more slowly and last longer than mealtime insulins. Your doctor usually recommends you take basal insulin once or twice a day.
• Mixture insulins: Mixture insulins contain a mix of both basal and mealtime insulins in one solution. They can provide blood sugar control at meals, between meals, and even at night, depending on your treatment plan. (LillyDiabetes.com)

  Within this simple definition of insulins, there are about 15 different types of insulin that fall within these categories that are best suited for some people and not for others.

  Now you get that the medical program cannot be one size fits all, it is virtually impossible with all the different combinations of insulin out there, but what you may not realize is that the lifestyle program is different for all people with type 1 diabetes as well.

  Lifestyle program consists of eating, sleeping, exercising, stress, adrenaline, and whatever else there is that makes up someone’s life. How someone lives and reacts to their life is as individual as it comes. How that person’s blood sugar reacts is the ultimate statement of individuality.

  Let me give some examples of my son’s lifestyle that threw me for a loop when he was diagnosed with Type 1 diabetes. Falling asleep causes my son’s glucose levels to skyrocket. The highest numbers we see all day and night are right when he is falling asleep. He requires double the amount of insulin at night than he does during the day.

  This confused me because most books on Type 1 or diabetes in general will tell you a person uses less insulin at night. Not my son.

  My son can eat ice cream with using very very little insulin. If the carton says there are 15 carbs, I can only give him insulin for 6 carbs or he will go very low. Go figure. He’s the only kid I know with Type 1 diabetes that can eat ice cream practically for free (no insulin).

  There have been many times when I seek advice from other parents of kids with Type 1 and I get answers like, “Nope, that doesn’t happen to us,” or, “That’s odd, we are completely opposite of that.”

  In an attempt to keep from boring you to tears, I will end with this. As you are learning about Type 1 diabetes for yourself or a loved one, just remember this, every person is an individual from their hair, to their smile to their blood glucose levels. Just because you know someone with Type 1 diabetes, doesn’t mean you know everyone with Type 1 diabetes.