I will never forget arriving at the ER with T and being taken directly back to the exam room in front of several other people waiting. I remember thinking- this isn't good. The nurse grabbed a small device thingy and told T she was going to poke his finger. I watched her place a little strip thingy in this little device with a screen on it. She poked T and then held the little strip thingy up to the bead of blood on his finger. The little device counted down 5-4-3-2-1. The nurse showed me the number with a scary concerned look on her face. 688. Then she ran out of the room.
I looked at T and said- "T, have you ever heard of a condition called Type 1 diabetes?" His eyes welled with tears and I grabbed his hand. "No, well yeah, sort of, is that what I have?"
"Yes, it is. It's going to be okay T. We are going to have a lot to learn, but you will be okay. We are going to figure this out as a family. This is one of those conditions that can be managed." I said. I couldn't bring myself to use the word disease.
"Is there a cure Mom? Can we make it go away?" I took a deep breath, so I could look him in the eye and not break down. "No, there isn't- yet. We are going to learn as much as we can T. You will be able to do whatever you want with your life. This isn't going to stop you from anything."
The Type 1 Diabetes Crash Course began. Honestly, I am glad I didn't know everything I know now, back then. I would have been so much more terrified and heart broke if I had understood how sick he was at the moment. I didn't know enough to be as scared as I should have been. That all came later in the night, after we learned just how seriously sick T was. His health rapidly declined, plateaued and then returned. Over the next several days, weeks, and months we have realized what a herculean task being a pancreas is.
Everyone says, "What can I do to help?"
My answer: Read this blog. Seriously. Learn the basics of Type 1. Don't make us keep repeating it. Take a few minutes and learn a little bit and then pass it on. We don't expect anyone to know anything about this disease. That all being said, sometimes it is exhausting saying the same thing over and over. We also realize that not everyone wants every detail about this, yet it is so consuming sometimes it is hard not to talk about it. We realize that we are now Type 1 diabetes advocates. It is a choice, we could have kept this quiet- but that just isn't how our family rolls.
So here starts your Diabetes Crash Course 101. By the end of today's lesson you will know recognize the difference between the 3 main types of diabetes and will have a small taste of what it takes to manage Type 1 diabetes.
Type 1- Type 1 diabetes occurs in children and less commonly (although with increasing frequency) in adults. It is an autoimmune disease. It occurs when a portion of the immune system malfunctions and begins to attack the islet cells in the pancreas that produce insulin. In order to develop diabetes, you must have a genetic make-up that makes you more likely to develop it. Many people who develop diabetes have something that happens in their life that "triggers" it. A stressful event, illness (even a common virus) or growth changes, puberty, injury or surgery. There is no cure and the only treatment is insulin by injection or through an insulin pump.
Having type 1 diabetes does not limit the foods that can be eaten. Individuals with T1 do not have to have a sugar free diet. The amount of carbohydrates going to be consumed must be calculated for every food item going to be eaten and then the appropriate amount of insulin injected under the skin based on mathematical ratios that meet your bodies needs.
People who have type 1 diabetes are at greater risk of losing their vision, heart disease, kidney failure, limb loss due to poor circulation, shortened life span, severe low blood sugars, and diabetic ketonacidosis. Having the best management possible reduces these events. Research and tools have come a long way in recent years and I believe that our children will not see these complications. I tell myself that so I can sleep at night.
Type 2 - Type 2 is a metabolic disorder. The body still makes insulin, in fact it may even make too much insulin, but the body stops using it efficiently. It can be managed with oral medication, reducing sugar and carbohydrate intake in the diet and exercise. Sometimes Type 2 diabetes can be reversed with diet and exercise alone. People with type 2 diabetes have the same risk factors and increase of risks as people with type 1.
Gestational Diabetes occurs during pregnancy. Some women can manage it with diet and others become insulin dependent. The risks for gestational diabetes are birth defects for the baby if not treated, miscarriage, a baby that grows very large and a baby that can have a serious low blood sugar after being born. Most cases of gestational diabetes go away after pregnancy ends.
People who do not have diabetes have a normal blood sugar range of 70-120. The target blood sugar ranges for people with Typ1 will vary based on age, weight and other factors. For T's age group 80-180 is common, however the clinical trial protocol T is involved in has a tighter blood sugar range of 70-140. There are so many factors that influence a persons blood sugar that it is very challenging, if not down right impossible to be as effective as a pancreas. Factors like how much and what kind of of food you eat, sleep (or lack of), activity, exercise, emotions, stress, weather, temperature, hormones, the list goes on and all play a role in how much insulin your body needs and how it uses it up. ALL of these factors must be taken into consideration (and sometimes predicted) before every single administration of insulin as well as every activity and meal. Essentially, when a Type 1 diabetes diagnosis is made, the person diagnosed or the caregivers of said person take on the roll of an imperfect pancreas. Being a pancreas is hard freakin work.
T checks his blood sugar with a finger poke and a glucose meter when he wakes up in the morning, before every meal, before exercise, after exercise, at bed time, and any time he feels like his blood sugar may be too low or too high, and then I check him 2 times every night around 12ish and 3ish and then Sam checks him in the early morning hours. It averages out to 8-12 times everyday, 24 hours a day, 7 days a week.
The number that the blood glucose meter comes up with determines if T needs more insulin by injection (soon to be administered by a pump) to lower his blood sugar, or more food to raise his blood sugar. If his blood sugar is in his target range and he is about to eat then we calculate the amount of carbohydrates in the food he is going to eat, calculate the amount of insulin he needs and then he injects it and eats. We calculate carbs by using labels, weighing foods, by using our Droid smart phones and by my favorite method the "SWAG method" (scientific wild ass guess).
It totally rocks when we get it right and he stays in target- the times we don't he either has a low blood sugar from having too much insulin that makes him feel shaky, weak, sweaty and sometimes results in a migraine or a high blood sugar from too much food and not enough insulin that leaves him tired, shaky and gives him a headache. It is frustrating that instead of a letter grade for our crash course, our success or failure with Diabetes 101 is our son's health and well being.
Thanks for being a great class. Stayed tuned for Diabetes 102 when we will cover the tools that help us manage this beast and the insulin pump that T will be using to administer his insulin.