True's Truth: One Month

It’s been one month and three days since True’s diagnosis. It’s funny because Todd and True say that they feel like it’s been much longer and that it feels like we’ve been dealing with diabetes forever. To me it still feels like yesterday. I’m still not comfortable with it. It still scares me. It still confuses me. It still worries me. The day will be going by as usual and then suddenly True will say he doesn’t feel well – he might feel dizzy or headachy. I’ll tell him to check his blood sugar and it’s dropped to 62. For no reason. It’s just dropped. I quickly give him some juice or a sugary snack to bring his blood sugar back up and then in a few minutes he feels relatively okay again. But there is no warning for these little episodes. It just happens, out of the clear blue. That leaves me disconcerted. What if he drops really low at night and we don’t know? I shudder to think of what could happen. Todd is really good about checking his blood sugar in the middle of the night if we’ve noticed he’s been running low on a certain day but that doesn’t give us 24/7 reassurance.

There are these little devices called CGMs – Continuous Glucose Monitors that stay on the person all the time and alerts the user of high and low blood sugars and I will definitely ask about getting one at our next endo clinic appointment, but they are very expensive and IF insurance even approves them there is still a lot of high co-pays, so I hear. But that reassurance, while imperfect, might be nice. I don’t know how True would feel wearing a device on his body all the time, but it might make his life easier as well.

Easier. That’s not really a word we use very often. Nothing is really easy with diabetes. Everything has to be so pre-planned. Yesterday True went to a friend’s house after school. He called and asked if he could stay for dinner – they were ordering pizza. I said yes, and drove over all his supplies – glucose meter, insulin pen and needles, emergency snacks. He called me at 5:30 and said he checked his blood sugar and it was only 73 and they didn’t have dinner ready yet. I had him eat one of his emergency snacks. He usually eats at 5pm. It did not surprise me that his blood sugar was dropping at 5:30. I cannot control what time other people eat. He called again at 6:20, dinner was finally ready. I had to look up the nutrition information for the pizza place they ordered from and try to figure out the amount of carbs (it’s the carbs that matter, NOT the sugar as many people think) and in two slices of pizza and one bread stick. It was a huge amount of carbs and it needed a high dose of insulin. I figured out his dose and told True and he injected himself and went and ate dinner. I got a text 20 minutes later that he wanted “one more tiny bit of breadstick.” Previously in our lives that wouldn’t have been a problem. But he couldn’t have one more breadstick, because he’d dosed for a certain amount of carbs and more carbs would throw off his carefully calculated blood sugar level. I had no way of knowing what the carb amount was for a “tiny bit of breadstick was” so I had to tell him no. He was frustrated that he couldn’t just have a damn little of piece of bread. So was I – but right now it’s just complicated.

That’s again where technology comes in. If he had an insulin pump, he probably could have had that tiny bit of bread. But now it’s just too complicated. And we are told that a pump, if we can afford it and get insurance approval for it, is a year off. The endo clinic said maybe by his diagnosis anniversary. That’s eleven months away. So for now, we do it the old fashioned way with calculators and needles. It’s only been one short month. One little month. A lifetime to True. Mere seconds to me, still bumbling to do everything right.

Last night I was tucking True into bed and he said, “I hate diabetes.” I never know what to say or do when he says that. I just said, “I know. I do too.” Is that the right answer? Is that supportive or the opposite of supportive? Some say we are made stronger by life’s challenges and that we learn from them. I don’t really agree. This is just one big pain the ass for a sweet little boy to have to go through. It complicates life immensely. We endure the challenges because we have to. We are strong – but because we have to be. To have to endure endless finger pokes and injections takes tremendous strength and True complains so rarely. One kind person at temple told me the other night that he is a little hero. He kind of is. At least to me he is. Any kid that has to deal with a disease is, and he does it with such grace and dignity. So much more than I. I am still calling Todd for reassurance at times with certain insulin doses. I don’t yet have the confidence that Todd has. Todd handles the morning and lunch insulin doses and I handle the afternoon and dinner and we share the evening shot depending just on who is around to give True his nighttime shot (the only one he needs help with as it’s a different insulin, not in the pen, and it goes in his hip.)

This seems like an insane way to live sometimes. For the year 2012 it seems like a not very modern approach to a very old disease. I wonder if there will be a cure in this life time. I read an blog post yesterday about little research there is for diabetes compared to breast cancer. It read:

In 2012, according to the National Institutes of Health, 39,920 women and men died from breast cancer. In 2007 (the latest year for which statistics are available) 231,404 women and men died from diabetes, according to the Centers for Disease Control and Prevention.

According to Marie Claire magazine in 2011 “an estimated $6 billion is raised every year in the name of breast cancer. And the money keeps pouring in.”

By contrast, in 2010, according to diabeteshealth.com, “$150 million [was] earmarked for research specifically on type 1 diabetes” by the federal government’s National Institutes of Diabetes and Digestive and Kidney Diseases. The Juvenile Diabetes Research Foundation, meanwhile, raised $1.4 billion for research. But, oh wait, that’s the total amount of money raised since the JDRF was founded in 1970.

Why so little money for diabetes? It’s just not trendy. I’m glad breast cancer gets so much money, I just wish the disease True has could get as much money. It scares me that so many people die from this disease and that compared to other diseases, there is so little research money going towards a cure. Yes, insulin is a god send. But it’s still an archaic treatment when my baby boy has to poke himself a dozen times a day. I know a pump would help, but that’s not a cure either. I want a real cure. Not just management. I hope I live to see that for my boy.

It’s only been a month and I miss our carefree life. I miss baking cookies for my boy. I know I still could, but not without doing a hell of a lot of math and then him having to take a shot to be able to have more than one. I miss buying little treats for him in the store that he can have after school as a surprise. I miss just sitting down to dinner and not having to spend 5-10 minutes figuring out carbs and insulin doses. I miss just going out to dinner anywhere we want and not being limited to places that have posted nutritional information with carb content somewhere online or otherwise. I miss the days when food was just food and not a mathematical experience. Everything is so complicated now. I can’t believe we’ve survived a whole month of this. I wonder if I will ever get used to it.

I suppose I will. I suppose one day I will gain confidence and security in what I’m doing. But I wonder if I’ll ever stop worrying.

What really helps is the amazing support from family and friends. Everyone’s patience and encouragement and understanding has been so helpful. Tag’s friend Desiree made a great poster board for True that says, “Stay Strong True” that was really special. True was really touched as was I. In this month even though it’s still complicated, things have somewhat normalized. We’ve established routines and True is just used to it. True and I have been going on evening walks each day which has been nice. We talk about life and rarely does diabetes come into the discussion anymore. Life goes on – just in a more complicated way. We’ve survived the first month. We’ll keep on surviving.