What I wish I knew then about Type 1 Diabetes


 

I have read so many stories on blogs, news, Facebook and other social media sites about the different struggles parents and young kids go through when living with type 1 diabetes. It was so hard for me understanding what happened to me at age 11. I can’t imagine being younger and dealing with it all. I recently wrote about my initial diagnosis when I got sick. I am not sure if my situation was because it happened 27 years ago because I read stories of people who have had this disease a lot longer than I. Knowing how I live my life right now, things could have been completely different for me.

  • The first thing I would want to know is what the heck this disease is. I mean you can tell someone what, when, how but the real thing we need to know is WHY. Why do I need to take insulin; why do I have to stick a needle in my finger 10 times a day; why can’t I eat this or that; why am I so tired; why am I confused; why do I even need to do any of this. Seriously can go on and on with all the questions. So my advice to all parents out there with young children with type 1 diagnosis, is to get educated, help them understand how to answer all of these questions. And if you are diagnosed a little later in life, get educated. As a 38-year-old adult with type 1 diabetes, married for 14 years, mother of 2 healthy boys ages 10 and 7, I still don’t know everything I need to know!! I learn something new everyday. Check out this link for more information on type 1 basics.

 

  • For the Parents of type 1 diabetics…don’t make them feel like they are doing bad at taking care of themselves, not that this would be your intention, but don’t watch their every move, help them understand. I remember wanting to eat and my dad would tell me to check my blood sugar level in front of him. High numbers usually every time!! Well….I then started squeezing the alcohol pad into the blood, just a drop was enough and it would read lower…then I could eat. He wasn’t being a bad dad or not trying to help, I think we all just didn’t know what we were into when this all started. So make sure it’s not a bad experience. It is our job as parents to protect our kids, and dealing with this as a little one is no fun. And it sure is not fun for the adults, but if everyone can understand what each other is going through, it will make this journey a whole lot more bearable. For some great information click here.

 

  • Don’t think of it as a burden. I do not think diabetes is a burden for me ANY MORE. I really don’t. When I turned 22/23 years old, I literally woke up one day and said “what the heck am I doing?” Maybe I used some worse words than that, but seriously, I did not start to take control of my diabetes for all that time. I always put my diabetes on the back burner. And thinking of things how they are now, I honestly don’t know how I am alive and haven’t had any serious issues all these years. In middle school I used to love grabbing a candy bar or two for the bus ride home, I used to hide food in my room, when I started to drive by myself I would grab an entire Entenmann’s cake on the way home. High School, hmmm I think I took my morning insulin injection and my evening one, that was it, ate what and when I wanted. I was moody, confused, tired all the time. I remember one class I slept through the entire semester. Community college was the same, I slept through my morning class, not even sure how I passed. I remember peeking my head up a few times to answer some questions, but I you are a diabetic and reading this, you know how tired I mean. There were lots of other crazy things over the 27 years.

 

  • Once you gain control of your health, look into an insulin pump!! I absolutely love mine. It has helped me keep my A1C under 7 for the last 12 years. I only wish I had gotten it sooner! My pump is made by Medtronic  . Insurance is a must because these things are pricey! And so are the supplies. But I have worked full-time since age 17 and as soon as I was not under my parents insurance anymore, I have always had my own through my employers. I know there are other programs to help pay for the pump as well, and Medtronic will help with all of that. I have started a post on my pump and experience with it, and will post the link soon.

 

  • Experiment! Different foods react differently with your body and other things you eat. I am by no means an expert on nutrition!! But when you have diabetes as long as I have, you tend to understand what will happen if you eat certain foods. As a young adult it would have been a tremendous help for me to keep track of this. I didn’t do this as much when I was young. We always limited my food intake when I was first diagnosed. Sometimes we would get sugar-free foods, like cookies and ice cream. My opinion on sugar-free items….don’t bother!!! It is all about the carbohydrates you take into your body. Each person is different too. I take 1 unit of humalog insulin for every 10 grams of carbs I eat. And it may fluctuate throughout the day because my body reacts differently at different times. Working with my doctor and looking at patterns, we work on the best adjustments for me. When I eat a slice of pizza I know that my glucose level will rise later in the day, same with chinese food. So if I am eating those things, I will take insulin over a time period and using the insulin pump, you can easily do that. I know this now!! Wish I did then. I did not know ANYTHING about carb counting. It is hard to even think I didn’t know anything, but my doctor never told me this!!!!! The nutritionist had me on a calorie counting diet at first. It wasn’t until I moved to Florida and found my current Endocrinologist that taught me. This is just the saddest paragraph in this post I think. Because if you are a diabetic reading this, you are probably thinking that is just the craziest thing!! So from age 11 to age 23, I had no clue! And if you are diabetic reading this and don’t know about carb counting, please talk to your doctor now! For more information on food and fitness click here.

If I knew some of these things when I was younger, my life with type 1 diabetes would have been much different. I hope this helps my readers! Please feel free to comment!

For some great links, articles and information on all of the above and more, please check out Diabetes.org

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