Category: Uncategorized

When you have children you are immediately placed in charge. As a mom you are given 2 days in the hospital with your newborn and then you are sent home to care for this little human being. You learn to feed the baby, bathe the baby, soothe the baby, and keep the baby safe in a very short time frame. I have even heard new parents joke, or perhaps not joke, that their main objective is to ‘not kill the baby.’

Seriously though, isn’t that true? When a newborn is brought home from the hospital decisions are made almost hourly that directly affect the well being of the baby. Of course, not every decision is life threatening, but in the eyes of a new mom and dad, every decision feels as if it is. Thankfully though the decision to use a pacifier or not (or whatever the decision is at the moment) really is just a blip in the road of a million decisions you will make throughout the lifetime of this little baby. Some may be right, most will be wrong, but in the end the baby will grow and thrive and go on to live a very fulfilled life, whether or not you let him have a pacifier.

When my son was diagnosed with Type 1 diabetes I again became the expert on his care. We were in the hospital for 2 1/2 days. The nurses knew of my absolute determination to get home so they gave me a crash course on how to care for my son and this totally foreign disease of Type 1 diabetes. Had I known that those 2 1/2 days in the hospital would have been the only time I would ever receive that kind of help from a medical professional I might have not pushed so hard to get home and be on my own. I might actually still be there today, just kidding, kind of.

On my own seems to be a way of life now for me. I am the expert when it comes to my son’s care. I have made every decision on his care since we left the hospital over 2 1/2 years ago. I went to college to be a journalist and then continued my education to become a teacher. No where on that educational track did anyone mention to me anything about the pancreas or insulin or incurable autoimmune diseases, yet I am the expert when it comes to Type 1 diabetes. How did this happen?

I evaluate every number that is in my son’s meter. If there is a pattern of highs and lows I make an adjustment in his insulin pump. These adjustments that I make will hopefully be the right one to prevent another high or low at the said time. If my son’s sugar goes high or low with a certain type of food, it is up to me to evaluate the food and determines what steps to take the next time he eats that particular food. If the settings in his pump are not working anymore, either giving too much or too little insulin, it is up to me to decide to give more or less insulin during the day.

I look at over 70 numbers a week. Some don’t need me to do anything, yet other require me to make a decision to correct the situation. If I were to call a medical profession to talk about all of these decisions I would spend my life on the phone. It is because of this that I am the expert. I may not know the hows and whys of type 1 diabetes, but I sure know my son. I know how much insulin he needs to stay in range, and when he’s not in range I know how to fix it. I am an expert because my son has Type 1 diabetes.

It happens to all of us. If we are not the expert of our child’s Type 1 diabetes than our original dream of  trying ‘not to kill the baby,’ may just not come true. Type 1 diabetes is a serious, incurable, autoimmune disease that can kill, but fortunately for my son (and me) I am stronger and smarter that Type 1 diabetes, and I love my son more than anything, and it is because of that love than I am an expert.

There has been much chatter in the Type 1 diabetes community this past week and it all stems from the complete catastrophe of a show that aired on Oprah starring Dr. Mehmet Oz. In a failed attempt to teach about diabetes, all that Dr. Oz managed to do was raise more myths and misconceptions when it comes to differentiating between the two main types of diabetes: Type 1 and Type 2.

This post will not be about his poor bedside manner. Or the awful almost cringe-worthy way he displayed a woman with Type 1 diabetes and her complications as a scare tactic for people ignoring their own Type 2 diabetes. Or the way he is so omnipotent in his own mind that he has the audacity to take on such huge diseases as Type 1 or Type 2 diabetes without having an endocrinologist right at his side as he spoke. No, this post is about quite simply a name. The inability (or ignorance) of Dr. Oz to use the name Type 2 diabetes when he is talking solely about Type 2 diabetes allows for too much confusion when it comes to my son’s disease, Type 1 diabetes.

Something that Dr. Oz said really stuck with me. He said, “the amount of insulin you have to take every day depends on “how bad” your diabetes is.”  While I will not say whether that is true or not for Type 2 diabetes, I will say that is an absolute, unequivocal lie when it comes to Type 1 diabetes. All people with Type 1 diabetes take insulin to live. There is no such thing as good, bad, worse, severe, brittle, pre-, or a little Type 1 diabetes. Type 1 diabetes is what it is. It is the body’s inability to produce its own insulin. Things are happening in a person with Type 1 diabetes body that stop the production of insulin. All cases of Type 1 diabetes require insulin from the minute they are diagnosed. There is no degree of ‘how bad’ that determines whether you take insulin or not.

You may be asking yourself why this bothers me so much. It bothers me because my son lives with Type 1 diabetes through no fault of his own, yet people still feel the need to spew their false understandings whenever they meet us. Strangers see that my son has an insulin pump and they are compelled for whatever reason to say, “Oh he must have bad diabetes.” Thank you Dr. Oz for continuing this myth. No, my son does not have bad diabetes, he has Type 1 diabetes. He needs insulin to live.

Or when yet another self-proclaimed expert on diabetes stops me at a food court and says, “You know your son wouldn’t have to take insulin if you didn’t give him that ice cream cone,” to that I say, thank you again Dr. Oz. If you had only pointed out that all people with Type 1 diabetes need to take insulin regardless of what they eat maybe, just maybe, one single person could have been educated properly as opposed to being  fed more misconceptions.

I know of no other disease that gets lumped with other diseases simply because experts are too lazy to use the proper terminology. When someone is diagnosed with cancer, does the doctor leave it at that? I would imagine a person receiving a cancer diagnosis would like to know if it were pancreatic cancer or skin cancer. I would also imagine that a person receiving a diagnosis of pancreatic cancer would be surprised to be asked from a stranger on the street if they planned on using sunblock to protect their skin now. Sure, aside from being awfully rude and presumptuous, it just doesn’t make any sense.

Type 1 and Type 2 diabetes deserve the same respect. The people living with Type 1 diabetes, the autoimmune disease, deserve the proper name be used even more than the actual disease. The misconceptions that are hurled at my son (and me) are rude, presumptuous, hurtful and in 100% of cases outright untruths that make no sense.

So in answer to my original question, what’s in a name? Everything, Dr. Oz, everything.

When my son was first diagnosed with Type 1 diabetes a few people mentioned in passing that it is the ‘thinking man’s disease.’ I wasn’t sure what they meant until I was inundated with blood glucose numbers, insulin dosage amounts, pump basal and bolus rates, insulin to carb ratios, insulin sensitivity ratios and carb amounts in foods. A diagnosis of Type 1 diabetes means a complete submersion into the world of math. Never since my high school Honors Algebra final exam was I so happy that I still understood ratios and fractions. My son’s life depends on my ability to think through all these numbers and my capacity to apply them to his diabetes care.

What I find so ironic about this disease that requires so much intellectual ability, is that when the person with Type 1 diabetes has fluctuations in their blood glucose number, either high or low, they are unable to think clearly. Unable to do the one thing that keeps them healthy…think.

My son is only 6 years old, so he doesn’t make any diabetes related decisions yet. He does however have to make plenty of decisions when it comes to school. He is currently learning how to add double digit numbers and to read. Yes, read. Something that requires tremendous concentration and memory. Most times he handles school and learning like a champ. He is a very bright boy who can articulate well and grasp new concepts quicker than most 6 year olds that I have met. That is until diabetes steps in.

When diabetes rears it’s ugly head and throws a curve ball such as a high or low glucose reading, my son is no longer the self-sufficient learner that he tends to be. When his numbers are too high or too low he cannot think clearly, he cannot make decisions properly, he cannot retain information presented to him. It is the old Maslow’s hierarchy of needs that takes over. When my son’s sugar is rising or dropping he goes into survival mode. His body gets overcome with the symptoms of the high or the low sugar and nothing other than remediation of the situation is of concern.

When my son’s glucose goes to low he gets shaky, dizzy, sees spots, gets weak in the knees and becomes very tired. Learning how to add 16 +30 is the last thing from his mind. He needs to survive the low, treat the symptoms that are making him feel so bad, and knowing that answer is 46 is not going to do anything to help the low.

Same goes for when my son’s sugar is too high. The first time I witnessed this was about 7 months after diagnosis. In the process of picking him up from preschool I asked him to get his paper off the table. All he had to do was identify his name at the top of the paper out of 10 other names on the table. A task that he had successfully completed every day since the first day of preschool. My son looked at me and said, “I can’t find my name, can you do it.”

I knew something was not right. I grabbed the paper and my son and ran to our truck to test his sugar. Lo and behold his glucose reading was about 500. Above 500!!! With a glucose reading that high my son was unable to read his own name. HIS OWN NAME. Now you tell me how he is supposed to learn to comprehend a story about Penguins or Martin Luther King Jr. when he can’t even read his own name when his blood glucose is too high.

Now having diabetes is not an excuse for not learning in school, but it sure doesn’t help the learning process when the diabetes is not playing a fair game. Type 1 diabetes doesn’t care that my son cries when he gets a math problem wrong because his body was feeling right because of a dropping number. Type 1 diabetes doesn’t care that when my son’s sugar is so high all he can think about is how his head feels like it’s splitting in two, and not that penguins can’t fly.

Type 1 diabetes doesn’t care, but I do, and I hope my son knows that.