Posted on

Easy?

The phrase, “you make it all look so easy,” in reference to how we handle Type 1 diabetes is always met with mixed emotions.
While on the outside, “you make it all look so easy,” is a definite compliment, it does stir up some mixed emotions inside of me. I am proud that I have done what I have claimed to do since diagnosis day almost 2 years ago. I incorporated diabetes into OUR life as opposed to rearranging our lives around diabetes. Diabetes just became something that we dealt with. It didn’t determine if we went to the beach for the day, it just came along. Diabetes didn’t decide that we couldn’t go on playdates anymore, diabetes was just going to have to tag along. We did this, my son and me, and I am proud of both of us.

On the flip side of ‘you make it all look so easy,” I feel like my son is not getting the credit he deserves for living with this disease 24 hours a day every day of his life since diagnosis day. He does get his finger checked 10 times a day. He does have to stop playing in the pool even though he feels fine because sometimes lows can sneak up on you faster than you can say, “Mommy, I’m shaky.” He does have to wait to eat every single time he’s hungry to see if I need to check his sugar or to make sure all the carbs are counted already.

My son deserves credit for withstanding numerous blood glucose checks while he is sleeping, and then sometimes eating full snacks at 3:00am to raise his blood sugar, all with his eyes closed.

My son deserves credit for all the things he does to live with Type 1 diabetes. He withstands numerous questions about his pump, his meter, his candy that he carries for lows. While it’s nice that people are interested, some are not really interested, just intrusive, yet my son answers them all equally.

My daughter deserves credit for living with her brother’s chronic illness too. She has learned at a very young age that when her brother says he is low that mama has to run. She has learned that even during our quiet times together mama may be needed to go tend to something diabetes-related for the safety of her brother.

My parents, my son’s grandparents, deserve credit for learning all over again how to care for their grandson. They chose to go to Caregivers Camp to learn about how to handle diabetes during outings and sleepovers at Nannie and Papa’s house. My brother, my son’s Uncle, deserves the same credit. He has given up a few nights of his life to sleep over with my son at Nannie and Papa’s house to ensure there is one more adult there that can help if any issues arise.

My husband, my son’s daddy, deserves credit for giving up time with me. There are many times when we are out and about remembering why we fell in love over 17 years ago, when our ‘date’ is cut short because my son needs something that only I can provide.

I don’t say any of this for people to feel pity on us. That is why when someone says, “You make it all look so easy,” I smile and say thank you. No one needs to know the behind the scenes when it is not all so easy. We chose everyday to live our life exactly how we would live it if diabetes never reared it’s ugly head. We chose to ‘make it all look so easy’ so that we can go on living our lives as before. But I will tell you, it is nice when someone who says that also adds, “But I do know how hard you work to make it all look so easy.”

Posted on

No ‘getting off’ insulin for us.

A person with Type 1 diabetes can never ‘get off’ or stop using insulin regardless of exercise and diet.

A few months after my son was diagnosed we were at a family party. I was really not used to him having Type 1, so I was really unprepared to have an educated conversation about it. The farthest any conversation had gotten up until this point since our diagnosis consisted of, “How are you?” and “How is your son?” No one had ever asked any questions that I might not have known the answer, until this party two months after diagnosis.

A friend of my cousin who was a nurse started to ask me what I was feeding my son for breakfast. I told her pancakes, and stuff like that. I could tell by the look on her face that she disapproved. In an attempt to understand Type 1 diabetes better, I engaged in what I thought was going to be an enlightening conversation. Well, it was enlightening alright, but for all the wrong reasons.

She started to yell at me, yes yell at me, that I would never be able to get my son off insulin if I continued to feed him carbs such as pancakes. I must have looked confused, I never really thought that I had to get him off insulin, so she continued. She said I needed to change his diet, cut out all carbs, so that I could get him off insulin once and for all.

I was so stunned and angry that I couldn’t even formulate a sentence. I was not angry at her (yet) I was angry at the hospital nursing staff because they had led me to believe that he needed insulin and carbs to live and grow. I felt like I had been misled.

Well, I came home, after crying the whole hour ride home and immediately posted what had happened on www.type1parents.org. I cried and cried as I typed asking the parents that had become my support system exactly what I was doing wrong, should I be trying to get my son off insulin as this person had suggested (yelled) to me.

Do you know what they wrote back to me? A very simple statement, that still sticks in my thoughts today. They wrote, “Insulin is like air to your son, without it he will die.” Seriously, he will die without it. Could you imagine the consequences if I had believed this woman, and started to feed my 4 year old a carb free diet so that I could try to get him off insulin. First he would stop growing from lack of carbs, which give the body energy, then he would eventually die from lack of insulin.

Everyone needs insulin to live. People without Type 1 diabetes don’t have to think one second if their body is producing insulin. People without Type 1 have a steady stream of insulin flowing through their body keeping their blood sugar level automtatically. When the pancreas works, by providing insulin, it’s a very handy organ. The brain is even smart enough to tell a person’s pancreas without diabetes that a piece of very rich creamy chocolate cake is coming down the pipe soon, so insulin production is increased even before the first bite is swallowed to ensure the blood glucose levels remain consistent. Very nice system, when it works.

People with Type 1 diabetes don’t have the luxury of a working pancreas that puts out insulin. There is no insulin being produced…ever. Not for meals, and not for just simple living. Because of this people with Type 1 need to rely on two methods of insulin delivery every day. One type that gets taken every 24 hours is called a BASAL insulin. It takes the place of the BASE insulin that everyone else has coursing through their blood without any effort on their part. It keeps their blood glucose steady during times when they are not eating.

Now, the second method of insulin delivery that must be administered with every carb ingested is called the fast acting insulin, or BOLUS. This bolus (fast acting insulin) can be taken as many times a day as the person eats carbs. Some people take as few as 3 shots a day of fast acting, and some people can take as many as 10 shots a day. Let me explain. A four year old boy, as my son was at diagnosis, asks for milk. He has to get a shot to cover that milk. Then he asks for lunch, maybe a PB & J sandwich and some carrots. He has to get a shot to cover the carbs in the jelly and the bread, and even the carrots. Do you see where this is going? Think about another 4 or 5 year old that you may know. Eating and growing go hand in hand. Everytime my son eats, he has to get insulin. A bolus of insulin is also given if the blood glucose goes higher than the appropriate range for that particular person.

So, ‘getting off’ insulin is by no means any option for people with Type 1 diabetes. They have the basal insulin to keep them steady and the bolus of fast acting to cover their carbs when they eat and to treat high blood glucose. While a healty diet and exercise are wonderful ways of life, they will not cure Type 1 diabetes, and they will never replace the insulin that their bodies no longer make.

I look forward to the next family party when I may see this person again. Now I am ready to have that educated conversation. Except this time, it would be me doing the educating.

Posted on

Summer.

Summer. School’s out and summer’s here. Are you thinking what I’m thinking? Sleeping late, summer nights, ice cream, swimming, and basal changes. Wait. What?

As the carefree days of summer approach us there are many things that undeniably shout ‘Summer!’ The sound of the ice cream truck, the smell of the beach, picnics, jumping off the diving board, and for a kid living with Type 1 diabetes it also means basal rate testing and basal rate changes.

Basal insulin is the background insulin that is coursing through the body 24 hours a day. Basal insulin is either given through a shot once every 24 hours or through multiple rates throughout the day via an insulin pump. My son wears an insulin pump, and he currently has 8 different basal rates set. His total amount of basal insulin over a 24 hour period is 9.25 units. That means over a 24 hour period his body needs 9.25 units to live. Some hours during the day he needs more insulin, like at night, and some hours during the day he needs less insulin, like in the morning, hence the 8 different rates. His body needs more and less insulin all different times of day.

With summer here, and no school schedule to follow my son’s basal needs will change. You may ask yourself, how is this possible? What does summer and school have to do with insulin needs? Unfortunately the answer is everything.

During the school year my son goes to sleep at 7:30pm. His body requires much more insulin from the moment he falls asleep until about midnight, when his insulin needs slowly taper off until about 5:00am. I am not a doctor (I just play one on TV), but it just makes sense then that in the summer when his bedtime moves to 9:00 there would be a difference in his insulin needs. The difference between 7:30 and 9:00pm is an hour and a half that he may (or may not) need less insulin. The only way to tell is to watch his numbers at that particular time of day and test more often for a few days. If he drops too low during or immediately after that time frame then I know some changes in insulin output need to take place, he may need less insulin.

On the opposite end of the night, the morning, there are sure to be some changes there too. On a school day my son has to wake up and eat breakfast almost immediately. Now that summer is here, he can sleep in and eat breakfast when he wants. Two things, sleeping late and eating off schedule, that may or may not change his insulin needs at that time.

Confused? Imagine how I feel.

While I am ecstatic that school is out, I am apprehensive with what the next few weeks are going to bring with my son’s numbers. I have no idea how his school basal rates are going to fit into his summer needs. I have to be more diligent, if that’s even possible, with testing his sugar. While I already test him over 10 times a day, I may have to cluster some of the testing during certain times of the day to determine specific insulin needs for the summer months.

It will all get done, hopefully quickly and smoothly, so that my son can enjoy summer just as any other child. I want him to have memories of ice cream trucks, swimming and just being a kid. Testing blood glucose levels, treating lows, and correcting highs should not overshadow all the good things we have going on.

Summer is one of my favorite time of year…I just want the same for my son.