Month: January 2010

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.

As Type 2 diabetes becomes more and more prevalent in our society so are the commercials on television telling you how to avoid getting it. The commercials talk about doctors warning their patients that they have pre-diabetes and with weight control and exercise there may be a way to never get full blown diabetes. What they fail to mention, almost all of the time, is that pre-diabetes is only for people with Type 2 diabetes. There is no such luck for people with Type 1 diabetes. People with Type 1 diabetes don’t get that out. There is no out when it comes to ‘our’ diabetes.

Children and adults that get Type 1 diabetes are usually moving right along in their life when all of a sudden something is not right. Either they get a flu-like illness that won’t go away, or they start losing weight at an alarming rate, or they are never satiated of thirst, or they use the bathroom more times than they can imagine in one hour, but whatever it is and however it happens, it comes on in an instant. And once these symptoms start there is no plan of action other than insulin that can help the situation. There is no slowing down of Type 1. Once the T cells attack and decimate the beta cells in the pancreas there is no exercise or healthy eating that can turn the process around. It is a one-way ticket to having Type 1 diabetes.

The same holds true for severity of Type 1 diabetes. The media is keen on saying that the diabetes was the ‘severe kind of diabetes’. All cases of Type 1 diabetes are severe. All people with Type 1 diabetes take insulin to live. Whether they wear a pump or take shots, or test 4 time a day or 12, it doesn’t matter. Every single person with Type 1 diabetes survives on life support, insulin, and manages a chronic illness on a daily basis, that could kill them in more ways than one.

Honestly, I think anything that can kill you while you sleep is severe.

So the next time you see a child with Type 1 diabetes understand there is nothing he (or his parents) could have done to prevent this dreaded disease. And there is nothing he can do to get rid of it either. There was no doctor’s visit where someone gave the heads up that this disease was coming our way. It comes out of the blue and stays for the duration.

Giving insulin for food doesn’t mean a person has severe diabetes, it means he has Type 1 diabetes. All people from the second they are diagnosed need insulin to cover their carb intake. So whether they are eating a bagel equaling  70 carbs, or a whole wheat turkey sandwich equaling 30 carbs, or a piece of candy equaling 11 carbs they still need to take insulin.

So ‘pre-diabetes’, ‘severe’, ‘brittle’,  and whatever other word they use to spice up a story are all words used by the media to fill up airtime about a disease that they really know nothing about. Type 1 diabetes is it’s own disease, different from Type 2 diabetes, and it should be treated that way.

When you become a parent you realize there are all types of parenting styles. When you become a parent of a child with Type 1 diabetes you realize the same holds true for that as well. There are many different parenting styles when it comes to taking care of diabetes in your own home.

You know how it is when your kids are little, you gravitate towards the moms and dads in playgroup that seemsimilar to you and your style. You may sit near the mom that sits on the floor instead of the chair during the book reading. Or you may join the dad at the food court that is feeding his kids the same ‘junk food’ meal as you. Whatever it may be, you find that you gravitate towards the parents that are most similar to your style. It’s no different when it comes to diabetes.

There are so many ways to live successfully with diabetes, but there are a few things in diabetes that are set in stone. People with Type 1 diabetes have to take insulin, that is a no brainer. People with Type 1 diabetes have to check their blood glucose in order to survive. After those two main things, families have choices when it comes to diabetes.

Families can choose to use an insulin pump to deliver insulin or give shots. Families can choose to weigh food or read the labels, or both. Families can choose whichever blood glucose meter they want, some choosing 2 or 3 for one person. Some families choose to send their kids to diabetes camp and some do not. Some people believe that you absolutely have to test a child overnight and some people believe you absolutely do not have to overnight test. Some people limit the types of foods their child with Type 1 diabetes can eat, and some allow all types of food. Other families follow their doctor’s orders implicitly, while others, under the supervision of  a doctor, tread their own path of care.

The problem with all of these choices and different parenting styles is that everyone thinks they are right. And the bigger problem within that is that everyone IS right. Each one of us does exactly what we think is right for our children. While it may not be the best solution for one family, it may be the only solution in another. Finding friends amongst all these different styles is difficult. It is much easier to be friendly with a person that follows a similar way of care as you do, mainly because we all think we are right. It is easier if the styles jive so that you know where each one is coming from.

So as in life, you have to muddle through all the different people you encounter, just to find that one person that you can call your friend. And I can say, finding that friend is so worth it when it comes to living with Type 1 diabetes. Living with Type 1 diabetes sucks, but to find a friend that follows the same groove as you, well, it makes it just a little less sucky.