08/19/2019
We will all come together this Friday for ONE purpose...to help find a CURE-Right Here, Right Now.
Below is a story from a mom about the daily life of a child living with Type 1. Let’s keep fighting and raising awareness! You are all warriors!
“It's not November yet... You know.... November... when you see my countless T1D posts on your news feed because it's "Diabetes Awareness Month." I usually save this stuff for then.
But today I'm feeling like dropping some truth bombs on Facebook. Today, as I slip into Kaidon's room and administer a dose of insulin while sleeps, it hit me like a ton of bricks. He will have this disease for the rest of his life. This disease that is so incredibly invisible. This disease that nobody knows or understands. The general public doesn't understand type 1 diabetes, and I wish they did. I wish you did!
We aren't dwellers in our house... Uhn uh! We don't dwell. We have a fairly positive outlook and our approach has been "We've got this!" 💪 We don't let T1D get us down. I rarely complain about the amount of work it is to successfully manage T1D, or the hours of lost sleep, or the stress, the worry, the countless phone calls to insurance, pharmacies, mail order services. The prescriptions, the supplies, keeping it all organized and filled so he never runs out. Rotating stock. Keeping track of site change days and transmitter expirations. Keeping glucose stocked. The calls/emails to the endocrinologists, keeping RXs current (yeah, those RXs expire even though the disease doesn't), the prior authorizations, the appointments, the school stuff (emails, phone calls, educating teachers, advocating for Kaidon's rights, 504 accommodation plans, doctors orders, counselor meetings, nurse meetings, etc etc etc). The list goes on. And Kaidon rarely complains about the day-to-day tasks of managing a relentless disease (which I will list below).
Kaidon has always had a positive attitude about this disease. Of course it was hard in the beginning. There were a TON of tears and "Why me!" moments. And he had a fear of needles. Imagine a child with a needle phobia being told he'd need up to 10 shots a day (some days even more)? 😭 Yeah.... That was incredibly HARD! But once he settled in to this new life, he owned it! He manages his blood sugar exceptionally well. Most teens do not do as well as he does (according to statistics). So he is amazing. He is a freaking warrior and he keeps on keeping on! And he does it with a smile. ❤️
So today, I want to tell you what it means to be a kid with Type 1 Diabetes. Not because I want to complain... Not because I want your sympathy... but because it's important that you understand. Knowledge is important, and the general public lacks knowledge about T1D. So I want to educate you. And I want to take a minute to celebrate what a bad ass kid I have. I want to shed some light into his life. The invisible part of life of a type 1 diabetic....
When Kaidon wakes up in the morning he has to take a pill. Very first thing he does. And it has to be taken at the same time every day, so forget sleeping in. The pill is for his thyroid. He also has Hashimoto's disease. Folks with T1D are prone to developing other autoimmune diseases.
Ahhh yes that's right. T1D is an autoimmune disease. It isn't caused by diet or lack of exercise. Say it with me.... "Eating sugar doesn't cause T1D!" There is no lifestyle component of a T1D diagnosis. There is nothing that could've been done to prevent it and there is still no known cause. It occurs when the body's own immune system attacks and destroys the insulin-producing cells of the pancreas. We all make insulin. It's the hormone that turns our food into energy. T1Ds bodies no longer make the insulin the body needs. So they must inject insulin for the rest or their lives or they die. Yes, that's right. Without insulin they die.
T1D was once a terminal illness. 100% of type 1 diabetics died. That was before the invention of insulin (less than 100 years ago). The invention of insulin saved my child's life.
So upon waking : after he takes his pill, he does a finger poke to check his blood sugar. He enters the number into his Dexcom CGM to calibrate. He does this every morning. If he's a little on the low side he has a few grams of glucose. If he's a little on the higher side he has insulin. This gets his blood sugar into a good spot for breakfast. Then he determines what he'd like to eat for breakfast. It isn't as easy as just grabbing something from the kitchen and eating it. Nope. Everything has to be accounted for. Every carbohydrate must be counted. A carefully calculated insulin dose must be given for whatever he eats.
Cereal: 38g
Toast: 22g
Banana: 25g
Yogurt: 24g
Oj: 19g
Bacon: 0g
We take into account what he's eating, the carbs / fat / protein, his current blood sugar, his expected activity level, and a few other variables, then we guesstimate an insulin dose. But careful! Too much insulin will kill him. Too little insulin will result in a high. So we better guess correctly. Then we determine how long he needs to wait before he eats. Insulin needs time to start working before he can eat. Starving? Too bad. He has to wait.
So we calculate the dose and he injects his insulin then sets a timer for 10-20 mins. When it's finally time to eat he sits down and eats his bacon first. Protein first! It helps slow down the digestion of the higher glycemic foods. That prevents spikes in his blood sugar and keeps him healthy. Protein first, every breakfast, not an option.
Oh yeah...did I mention, if he doesn't manage his blood sugar well he faces the risk of horrible complications? Blindness, gastroparesis, kidney disease, cardiovascular disease, neuropathy, loss of limbs, and more.... Some more acute complications are seizure, coma, diabetic ketoacidosis, or death. So managing well isn't an option. His life literally depends on it. He will NOT be on dialysis when he's 30. He will NOT be blind by 40. We are NOT LETTING THAT HAPPEN!
Once he's done eating we have to keep a close eye on his blood sugar. If we gave too much insulin he will have a low and need glucose. If we didn't give enough he will spike and need more insulin. Fortunately we've gotten pretty good at this so most meals go well. But we still have to pay attention and act accordingly. Then, in a few hours, the protein / fat of his meal will create another rise in blood sugar and another insulin injection will be needed. Once that's taken care of he can have a snack or lunch and we repeat the process above. We repeat that process every time he eats. Wants a drink of juice? Nope! Insulin first, then wait. Feeling snacky? Want a few chips? Nope! Insulin first, then wait. At Costco and wants a sample? Nope! Insulin first. Kaidon is not able to rummage through the fridge or pantry and munch on stuff like a normal kid. He can't even chew most gum without insulin. Every. Single. Thing. Must. Be. Accounted. For.
Now let's say he wants to go outside and shoot hoops? He has to check his blood sugar and ensure he's at a good level. Activity will cause blood sugar to plummet if he has any insulin active. So he has to have a snack first. We like to utilize protein as it raises him gently without a spike. He can't just head out to play. Steps must be taken to keep him safe. Otherwise he could drop dangerously low and have a seizure.
Let's say a friend stops by and wants to go for a bike ride? He can't just say "Bye mom! I'm going for a bike ride with Johnny!" he has to pack his supply bag. He needs insulin (his insulin pen), glucose (candy and juices), pen needles, backup syringes, a test kit with a meter, a poker, and test strips. He also needs his emergency glucagon kit in case of a severe hypoglycemic episode. He also must always have his phone. And if it's hot out, he must remember an ice pack. I also ensure his friend(s) know emergency protocol and have my #.
So he's all packed, but he still has to make sure his blood sugar is in a good spot. But if he's low, as he has been many times before, he can't go. He has to stay home and treat that low first. If we're lucky it'll come right up. But sometimes lows are stubborn and take awhile to come up. Activity makes the low worse, so he must sit down and consume sugar and wait for it to come up. Meanwhile his buddies are outside waiting on him. If they're good friends they'll come in and hang and wait with him. If they're not they'll tire of waiting and leave without him. Who wants to wait around for 30 minutes while Kaidon's blood sugar comes up? 😔
Now what happens when something goes wrong and he's high? We give insulin and use exercise to bring down the high. But he's tired and doesn't want to exercise.... Too bad. He has to go for a run or do some jumping jacks to speed that insulin along. But what if it's dinner time and he's high? 🤔 He can't consume food on a high blood sugar. So he has to wait til it comes down. It can take a couple hours to get a high BG down (less with exercise). Imagine being hungry, smelling the dinner cooking in the kitchen, but you can't eat it (yet)! This is life for a child with T1D.
Now let's talk about school....
T1D is 24/7, 365, with no breaks. So it must be managed at school as well. Carbs, insulin injections, BG checks, timing food, etc. This all goes on during the day at school when he's alone in his management (we do communicate via text). Imagine dealing with T1D on top of the normal stuff of a teenager.
T1D is insulin injections, finger pokes, carrying supplies, wearing medical devices inserted into the skin. Its basal and bolus and ISF. Its novolog, Tresiba, iport and Dexcom. Its alarms. All day and night. Its statistics: average blood sugar and standard deviation. A1c. Time in range. Lows. Highs. Juiceboxes. Lost sleep. Injection sites. Absorption. Scar tissue. Lipohypertrophy. Its blood sugar management. Staying in range. Normoglycemia. Bumps and nudges. Carbs. Corrections. Guesstimations. Monitoring. Macronutients. Protein and fat rises. Its ice packs in the summer. Its constantly changing insulin needs. It's puberty and hormones. Its glucagon. Its Skittles in the pocket. Its protein before exercise. It's waiting to eat. Its exercise when you don't want to. Its can't exercise when you do want to. Its hungry but wait. Protein first. Carb counting. Its rotating sites. Its securing sites with Opsite. It's Dexcom changes. Iport changes. Its prescriptions, doctor visits. Pharmacies. 504 plans. Medical management plans. Student rights. School nurse. School counselor. Its pokes and needles, big and small. Its staying strong, every single day. Its stigma. Its advocating. Its educating. Its risk. Its so many things, every single day, forever.
I could go on and on and on. But I won't. Again, I am not seeking sympathy for myself or for Kaidon. I am seeking understanding. I want people to know. T1D isn't "no big deal." It's a very big deal. It is complex. More complex than you'll ever know. It is life-threatening. It is serious. It is time consuming. It is at the forefront of his mind and mine all day, every day. It is relentless.
So the next time you see a child (or adult) with T1D, pat them on the back and tell them what a warrior they are. Tell them you understand. It helps a little bit when it's not quite so invisible.“
*The photo is one-month of insulin injections.
