I’m so proud of you, of all you have achieved and still will achieve in the future, while having type 1 diabetes. You’ve done everything you’ve wanted to do despite this disease. You haven’t lost your mind (because of diabetes, anyway)!
You’re deep in the middle of living and loving and finding out what you like most, what thrills you to your core, what’s meaningful to you in your life. I wish that you could find a way to incorporate caring for yourself and managing your blood sugar into the rest of your life’s development. I wish it weren’t so bothersome to constantly think about and care about your BG, insulin rates, food intake, and other health choices. It IS possible, even if it is a bother and takes mental focus away from things you love much more. Please consider taking the time–it’s not very much time, and you could feel so. much. better., physically and mentally, than you do now. It would be awesome if you felt good while you’re performing in choir and show choir and musicals and plays and recitals, and also while you’re learning and writing and thinking and having fun with your friends. You could feel so much better. Just try it, and see how it goes.
I know you have not had good experiences with doctors, nurses, and dietitians with regard to your D. Please believe me when I tell you that there really are medical professionals out there who can help you take care of yourself, and manage D, without blame and shame and stigma–without making you feel bad for feeling. You just haven’t met them yet! But you CAN learn about how to care for yourself and your D without the dr. crappys who don’t know how to treat people with diabetes. Stay strong. Keep up the faith that you will find good medical care. Not simply, or easily, but you will. Know that you deserve good, no excellent, medical care, provided with respect. You will find a dr. wonderfulendo, and more than one, in the years to come.
It’s going to be hard to hear this and know it to be true, but food is neither bad nor good. It’s something your body needs in order to survive, and it needs insulin in order to be useful to your body. It also impacts your blood sugar. It’s not a reward, and it’s not hurting anyone but you when you eat without bolusing or eat certain foods just because the nurse and dietician told you they were bad. The more crap you eat, the more insulin you’ll need. That’s all.
The numbers that show up when you test your blood are not bad or good, either. They’re just numbers. THEY’RE JUST NUMBERS. They do not determine your worth, and they do not mean that you are good or bad. They just are.
Numbers have power. BGs…carbohydrates…basal rates…correction boluses…and also, minutes of exercise and pounds of body weight. You can use that power to benefit your health, not to make you feel guilty and terrible. With knowledge and training, you can use the numbers. I wish that you would do this for yourself. There is no need to fear or hate the numbers, or the process of retrieving them or thinking about them. You can use your brain to analyze them, and to make decisions about what will help you feel better than ever! It’s not hard, you just have to speak up and ask someone who knows about type 1 diabetes management to teach you.
You know this in your heart already, but what the dr. originally told your parents when you were diagnosed in 1980 was a lie. There will not be a cure for diabetes by 1985, and there will still not be a cure by 1990, or 2010. It’s going to take a good long while–we still don’t have a cure in 2012. There are some really awesome researchers working on it, and the first outpatient clinical trials of a closed-loop system called an “artificial pancreas” have just been approved. It sounds super amazing. And remember when just a few years ago, an actual insulin pump was the size of your bedroom? Yeah. Things have gotten better–they’re not fixed or solved yet, but they are better technologically in so many ways. (Testing your blood will only take 5 seconds instead of 2 minutes, and all the data will be available for you to see and use on a small computer called a laptop! Awesomesauce!!)
Even though the doctors and nurses label you “emotional” and “noncompliant,” don’t accept those labels. Living with this lifetime disorder causes a lot of emotions/feelings/responses/decisions…and it takes some serious emotional work to maintain a clear head and not be a complete, freaked-out zombie over all your life requires. And while your blood sugars are consistently running at a very high level right now, with some massively low lows sometimes too, you don’t have to accept being called “noncompliant.” You are NOT a “bad diabetic.” You’re not stupid, and you’re not a bad person, either. They just haven’t found ways to communicate with you about diabetes such that you can listen and hear how to take the best care of yourself. You challenge them, and they’re not able to deal with it.
Take it easy on yourself. Your pancreas is broken, but your spirit is not. You have family and friends who love you regardless of how stupid your pancreas is. AND, you had one of the most important and incredibly COOLEST supports a kid with diabetes can have: CAMP!!! You’ll be able to apply to be a junior counselor in just a year or two, and you’re still in touch with so many amazing co-conspirators from diabetes camp. Guess what? In about twenty years you’re going to start taking part in a huge community of people with diabetes communicating on computers from all over the world, and you’ll find a bunch of your friends from camp whom you won’t have seen for many years. You’ll also find many, many other wonderful people with diabetes in this “virtual” community. It’s real community, and it’s important. Don’t wait for it to come to you. Go find it, and speak up when you get there.
Just know this: You’ll still be kicking around here when you’re 39 years old, with a 32-year diaversary on the horizon, and you have NO plans to give in to this disease. You’re headed for that Joslin 50-year medal, and it’s not going to stop there! Please think about what I’ve said, about taking care of yourself and taking steps to whip that diabetes into better shape now rather than later. You could feel a lot better. I know you can do it.
This post is for wego Health Activist Writer’s Month Challenge. The prompt: Dear 16-year-old-me. Write a letter to yourself at age 16. What would you tell yourself? What would you make your younger self aware of?