What happened to me at diagnosis? And, if you are reading this book because you just got diagnosed, what is happening to you?
Most cars run on gasoline, or electricity. Our body runs on glucose, a form of sugar. Our blood carries the glucose supplied by some of our organs (such as our liver) and distributes it around the body for use by all the parts that need it, like our muscles and organs. From there, our cells convert that glucose into raw energy for the actual processes of the body.
To bring blood glucose into their own cells (and later turn into energy), all these cells in our body need insulin. Insulin is made in our pancreas, specifically by a type of cell called beta cells. Once made, the pancreas sends the insulin into our blood to make it available to all the other parts of the body. Without the insulin made in the pancreas, glucose cannot enter cells to fuel them, so they start starving.
But, for us Type 1 Diabetics (or T1D), our auto-immune system turns against us. For some reason, it sees our beta-cells as dangerous aliens, and attacks them. Hence, Type 1 Diabetes, sometimes called Juvenile Diabetes (an outdated term), is an autoimmune disease: our own immune system is turning against a critical part of our body and destroying it.
For me, and possibly for you too, for months before my diagnosis, my immune system was slowly destroying the beta-cells in my pancreas. I had all kinds of symptoms that my pediatrician, my parents and I did not notice. I was not making enough insulin, so I was accumulating a lot of glucose in my blood. I was drinking a lot, because my body was trying to dilute the percentage of glucose in my blood. I was peeing a lot, because my body has so much glucose in my blood that it was trying to get rid of it by putting it all in my urine. I was really unfocused, because when your glucose level is high, your brain does not function well. I was sleeping a lot because I always felt tired: my body was not able to get enough energy to function from the reduced insulin that my damaged beta cells were making.
That week, I got a small ear infection—-it could have been anything else really, the straw that breaks the camel’s back, or, as my dad says, the drop of water that overflows the vase. That little disturbance probably dropped my remaining beta cell production down enough that my body could not function any more. Suddenly, the glucose in my blood was just too much, my few remaining beta cells shut down, and the only way left to get rid of my glucose was by peeing. I lost 18 lbs of water in less than a week, the only way that my body had to stave off death. I spent all my time sleeping because I had absolutely no energy left for my brain to function, as my body was not making enough insulin for that.
Then my body went into diabetic ketoacidosis (DKA). This is how and why: beyond glucose, our body has another way to make energy: our liver breaks down fat into substances called ketones, that our muscles can use for energy as a replacement for glucose when we don’t have any left (like in the middle of a marathon). The problem is that ketones acidify the blood: when there are too many, our blood becomes too acidic, essentially poisoning our body. In DKA, because our body needs a lot of energy right away, and since our cells cannot extract glucose from the blood for lack of insulin, the liver breaks down way too much fat too fast, quickly making a bunch of ketones. Eventually, the acidity of those ketones makes it impossible for our cells to function and we die. It is quick: once DKA starts, we can die within 48 hours (although it may, in other cases, take weeks). One common way to die of DKA is that, as our cells become weaker, they start leaking fluid. Our brain gets cerebral edema, which means too much fluid around that compresses it too tightly, and then we die. Long story short, it’s vital that if we suspect DKA, we seek professional medical help immediately.
Why you? Why me?
We had bad genetic luck!
We know there is a strong genetic component to diabetes because children and siblings of T1Ds are more likely to be T1Ds. But only about 1 of 10 of kids diagnosed with T1D has family with T1D. Science doesn’t have a perfect answer yet, but what seems to happen is that you and I were born with a jumble of genes that made us very likely or almost certain to become T1Ds, and then some event happened that pushed us over the edge. For me (and many diabetics), that event was the start of puberty: the novel cocktail of hormones that my body was creating likely activated a set of genes that eventually lead to the destruction of my pancreas. My ear infection was a catalyst to push my failing body to its limits, but it could have just as easily been a cold, serious stress, or a soccer game.
What does Type 1 diabetes mean for you and me?
It means that we will always need to manage our blood glucose ourselves, since our pancreas has decided to go on strike.
Our pancreas is very good at it: it constantly checks how much glucose we have, and immediately sends out insulin directly in our veins, which is very efficient.
So that’s what we do. We avoid and treat low blood sugar levels (interchangeably called low BGs, hypoglycemia, or just lows) and high blood sugar levels (also called high BGs, hyperglycemia, and highs) just as our pancreas would. We have a harder time doing a good job because we have to monitor our blood glucose, then inject insulin under the skin, which takes a lot longer to become effective. We are not as good at it (although technology is changing that), so it takes us some time every day to work at it. This is something we must do every day, all day: we can’t pass on it.
But, outside of that, our diagnosis does not change anything else. You and I are unlimited! Here are some of the things I have done in the past 5 years since I was diagnosed:
- I spent 2 years as a club soccer goalie and midfielder
- I spent 2 years in a competitive swim team
- The past 2 years, in high school, I have been a member of the school cross country running team, and on the varsity volleyball team
- Every summer since my diagnosis, I have spent a month with my family camping and hiking all over the US, in tons of national parks.
- I spent a week with my dad and my brother kayak-camping on Lake Superior
- I spent two weeks visiting Costa Rica by bus with my mom, surfing practically every day
- I hiked for months all over Europe with my family
- I visited friends in Switzerland for a month on my own
- I’ve backpacked up Mount Whitney
So, you see, there is nothing we can’t do, you and I. We just have to work at it harder than others!
Growing up T1D 