Six things

According to dblog day, today I'm supposed to blog about the six things I want you to know about diabetes (I know...who comes up with this stuff???), but since I'm trying to raise awareness and educate, I figure I'd give it a go.

Here they are in no particular order:

• 1. type 1 and type 2 diabetes are very different. Robby has Type 1 diabetes. It is an autoimmune disease; meaning that for reasons not even science can fully understand, his immune system decided to attack and kill off the insulin producing beta cells in his pancreas. He no longer produces insulin and never will. There is no cure. He can not manage it with medication or diet changes. He straight up needs life-saving insulin delivered to his body through shots or a pump. Type 2 diabetics suffer from some of the same symptoms and some of the same heath problems caused by this disease. The main difference is that type 2 diabetics still produce insulin, but for various reasons (diet, weight, genetics, etc) their body doesn't utilize it effectively. Some type 2 diabetics can manage and control their diabetes with the help of diet changes, exercise, and medications. Some (not all) can even reverse their diagnosis.

• 2. Robby can eat whatever he wants. When Robby was first diagnosed, people frequently said, "Well, this shouldn't be so hard for you guys since you already eat so healthy." I'll admit that Robby is better off because we eat healthy, but so would any kid be. Robby has no diet restrictions. He eats as any kid his age would, and I step in and act as any kid's pancreas would. Carbohydrates provide the body with the energy it needs to survive, insulin is what unlocks the energy in those carbs. EVERYTHING has carbs (except meat, cheese, and pickles). Sugar free stuff isn't necessarily carb free (it very rarely is). When Robby eats, all carbs must be counted and then given the proper dose of insulin for those carbs. Having said that, there are still some foods that are particularly nasty and difficult (pizza and mac and cheese). We want Robby to feel like a normal kid so we try to tackle these difficult foods (except mac and cheese, it's so tricky that we've pretty much banned if from our house) as best we can. Bottom line- there are no restrictions. My favorite was when we first arrived home from the hospital after Robby's diagnosis, our friends from church who also have a type 1 diabetic son brought us cookies...twice. She told me it was because no one will ever bring us treats again!

• 3. Insulin is not a cure, it is a life sustaining treatment. There currently is no cure for diabetes. Insulin is Robby's life-saving drug. He needs it to survive, and yet it is that same life-saving drug that could kill him. Yeah, sounds awful, but I'm not just saying that to be dramatic. Too much insulin could deprive his brain of necessary glycogen. It's what makes this delicate game of balancing insulin, carbs, physical activity (and any number of other factors) such a stressful task. And on that note, I wish people understood how difficult that task is. I know people mean well when they say, "Oh, so he just needs a few doses of insulin before or after meals to keep him going, right?" I wish it were only that simple. Humor me and check out Meri's post about a typical lunch situation with one of her boys. That is every meal and snack at our house. And even then, you can do all the math right, have the pump programmed perfectly and things can still turn out a little (or a lot) "off." This about killed John at first. His mathematical brain wanted inputs and outputs to match. At first it made my brain hurt and I cried a lot, but I think we're starting to get used to it a little.

• 4. There is no such thing as "leveling out" or "becoming more stable." I get questions all the time now that we are six moths out from diagnosis if we've seen Robby's blood sugars finally start to level out. Ahhhh! I wish! But there is no such thing as leveling out in the world of type 1. Highs and lows are just a part of the game. Robby could eat the same three meals EVERY day, be given the same amount of insulin every day and have completely different outcomes EVERY day. The number of variables that can effect blood sugar is mind boggling- if he eats something high fat, if he eats something with high glycemic index, if he's super active, if he's sick, if he's sad or excited, anxious or calm, if the barometric pressure drops (not even kidding), if he gets hurt, if he's having a growth spurt, if I bolus too late, if I accidentally stack the insulin doses...and the list goes on and on. It makes me marvel at what a miracle the human body is. There are a few things that we have definitely gotten a better hold of since he was first diagnosed- his breakfast spike is well under control, his basal rates of insulin are fine tuned, his carb to insulin ratios are better, and our carb counting/guessing skills are much more refined. These things have helped, but we still have crazy days with unexplained fly away highs (in the 400's) and drop through the floor lows (in the 40's) and we pretty much always will.

• 5. Managing type 1 diabetes is a full time job. All day. All night. I think that night time care is one of the hardest aspects of being a parent of a child with type 1. You'd think that once his little body is resting and not eating, it would be most stable. It turns out that growth hormones and other crazy stuff happens while we sleep. The liver kicks out glucose, food can be slow to digest, his pancreas can rally and spew out small amounts insulin, increased physical activity during the day can have a delayed response, and on and on. Thankfully, we have the CGM that helps us so that we don't have to poke him every 2-4 hours at night, but it is an electronic device and it does have it's fair share of glitches. We still get up at least once for a poke (BG check) and to make sure the CGM hasn't pooped out on us. In the last 6 months, we have only had 3 "perfect nights"- one in which he didn't need either food (yes, he can down an entire yogurt in his sleep) nor insulin to correct a trend. We've had LOTS of close to perfect nights that required minor adjustments (a few bites of yogurt or a small dose of insulin), and we've also had our fair share of sleepless nights where nothing goes right and one of us ends up sleeping on the floor in Robby's bedroom. It's tough. No way around it. It's just tough.

• 6. Robby is a normal kid and can do/be anything he wants to be. When you look at Robby you probably see a normal, active (and darling) two year old. If you look closely you'll see his battered little fingers and toes, his little fanny pack that holds his CGM receiver, and a slight bump on his leg or bum where he wears his insulin pod, but I hope that those aren't the first things you notice. John and I work like frantic, crazy mad-people on the sidelines of his life to ensure that he has a normal, happy childhood. Sometimes my head hurts from trying to figure out how soon to pre-bolus and dual-wave his pump for a slice of pizza, but if that means he gets to have pizza at the pizza party like all the other kids, then that's how it has to be. As long as he's careful and vigilant, he can do and be anything he wants to be (I'll have another post on this topic soon).

There you have it. Six things I wanted you to know about diabetes- consider yourself educated and enlightened.