type1demystified.com

There is no cure for Type 1 Diabetes.

There is no cure for type 1 Diabetes. Yes, I know I repeated that sentence, because even I don’t believe it sometimes. You may or may not know this. I know I didn’t know this when my son was diagnosed over 18 months ago.

About five days before my son was diagnosed with Type 1, I knew something was wrong. He was peeing, drinking and eating alot. I don’t mean he drank alot, like 2 cups of water, I mean 15 glasses of water in one day. Peeing alot. Peeing 7 times in one night. I knew in my mommy heart that something was not right. For some reason, the first thing I googled was ‘diabetes.’ I knew he had diabetes. I didn’t know anything about Type 1 (Juvenile) diabetes, or even that there was a Type 2 diabetes. I just knew that when I was teaching we were told to watch for kids that peed alot, because they may be developing diabetes. I’ll get back to that load of misinformation that was laid on me, but in reality, that tidbit ultimately saved my son’s life.

Fast forward to the hospital room when they told me my son had Type 1 diabetes. I wasn’t in shock, because I was the person that diagnosed him. I told the peditrician to do a urine check for sugar in his urine (I remembered those from when I was pregnant). But what did hit me like a ton of bricks was how the rest of the conversation continued.

I nodded my head at the nurse at her telling me of his diagnosis, then proceeded to ask, “Well where do we go from here, how do we cure him?” She smiled. She was a very compassionate woman to whom I will be forever grateful, and she said, “There is no cure. We will teach you how to give him shots to keep him alive.”

This is about when I lost my mind. Alive?! No cure?! I am embarrassed to say this now, but I actually said to the nurse, “But we have insurance, what do you mean there is no cure?” She said, “There is no cure for anyone. It doesn’t exist.”

And that was it. That was the moment, that the perfect little love of my life, would need insulin shots and finger pricks to keep him alive. There was no cure. That was the day that I needed to prove that I could give my baby a shot…many shots, and check his sugar…many checks, and count every carb that he was going to eat, just so we could be released from the hospital. There was no cure. There is no cure. That was it. The first day of the rest of our lives.

We don’t live our lives waiting for a cure, but one sure would be nice.

Although people with Type 1 diabetes work diligently at maintaining good blood glucose levels, actual control of blood glucose levels for people with Type 1 (esp. children) is a misnomer.

When your child gets diagnosed with Type 1 diabetes, there are many things that you can and must control. You can control hardware, such as what meter you are going to use to check their glucose levels. You can control what form of insulin administration is best for your child: syringe, pen or insulin pump. You can control how many times you test your child a day. You can control the healthy meals and snacks you create for your child. However, you learn very quickly, in this tightly controlled world that there are many more things that you cannot control.

You cannot control the weather. You cannot control stress or excitment your child may be feeling. You cannot control growth hormones, or illness. So now you may be asking yourself, well really who can control these things? Yes, that is true, no one can control the weather or what have you. But unfortunately ALL of these uncontrolled factors affect blood glucose levels. So in such an uncontrolled world with so many outside factors taking part, it is virtually impossible to control blood glucose levels. That is not to say good blood glucose levels can not be maintained. I’m not saying that at all. It’s the control part that is the misnomer.

Take my son for example, he has been living with diabetes for over 19 months. We are constantly working 24 hours a day, seven days a week to ensure that his numbers are as close to target as possible. While we do achieve good numbers most days, there are days when there are highs and lows that hit us out of the blue.

Our way of handling these numbers is by logging. Everytime I check my son’s glucose level, I write it down. I write down up to 12 checks a day on most days. What this does for me is it gives me the abiltiy to track patterns of highs and lows and provides me with ammunition foresee those highs and lows the next time to keep his sugar in range.

For instance, we enjoy (or rather he enjoys) going to a place called BounceU. It is an indoor play area with blow up attractions. It is a very physical place…a very physical place. I noticed the first time we went there, my son went low five hours after coming home. I wrote that in the log. The next time we went to BounceU, I remembered that he went low five hours after playing, so I gave him 10 uncovered (no insulin) carbs to help ward off the low. Didn’t work, he still went low. I also wrote that in the log. The last time we went, I remembered he still went low with 10 uncovered carbs, so this time he had 20 uncovered carbs. You know what, he did not go low. Score one for mom, but this was not control.

I don’t call this control. I laugh at people when they ask if his numbers are controlled. This is not control. Control would be never having a high or a low, and that is just not possible.

So please, before you ask a person with Type 1 diabetes if their numbers are controlled take a moment to reevaluate. The question in and of itself is invasive and should not be asked in the first place, and really it it provides you no where else to go in the conversation. A simple, “How are you?” would suffice everytime.