I lurked during the recent conversations surrounding the petition to change the name of type 1 diabetes, but I refrained from commenting for several reasons:
1. Lee Ann Thill said most of what I was thinking, and she said it well.
2. I feel sympathy for the mothers who started the petition and I don’t want to come across as being “against” them. I understand their frustration and I believe the real message in their petition is that parents of children with diabetes want to make their children’s lives better and easier. That’s not unique to diabetes. For example, my son has a very severe allergy to several nuts. I regularly say that I would like to rid the world of such nuts, make them as extinct as dinosaurs. I’m joking, of course, because I know it’s impossible. But I’m also being totally serious. I would do anything to make my son’s life better and safer, including wishing for the impossible. So while a name change may be more likely than nut-extinction, I can relate to – and empathize with – the feelings of the mothers behind the petition. I vote, however, for putting our combined efforts to bringing the cure closer so that we won’t need a name for diabetes at all.
But while we’re talking about names, let’s talk about LADA for a minute. LADA may be the most name-challenged of all types of diabetes. For starters, it has at least three names other than LADA, which is short for Latent Autoimmune Diabetes in Adults. There’s also Slow-Onset Type 1 Diabetes, Type 1.5 Diabetes, or Late-Onset Autoimmune Diabetes of Adulthood. But it doesn’t really matter what you call it because practically no one has heard of it by any name, including most people in the medical field (outside of endocrinology). My dermatologist tells me to just walk a little more and I won’t have diabetes. The OBGYN who treated me when I was pregnant still thinks I have gestational diabetes, even though I gave birth four years ago. And pretty much no two endos have the exact same take on LADA, which may have something to do with the fact that no two LADA cases are the same. So, since no one agrees on what LADA is or what to call it, I will refer to my diabetes as its own unique subcategory, JADA, short for Jessica Apple’s Diabetes Autoimmunius (‘ius’ suffix for the Latin flair).
And now I shall tell you about JADA.
JADA, for the most part, is easy to control (when compared to “real” type 1). As long as I move and follow a low carb diet, I can avoid basal insulin. But, if I eat carbs, I need to bolus with rapid insulin.
Most people don’t treat LADA this way, but since I have JADA, and I am the boss of me, I try not to eat carbs. My reasoning: if I can survive without insulin by eating eggs, nuts, cucumbers, cauliflower, tahini, avocados, etc, why get involved with insulin?
As long as I’m not faced with my own homemade baked goods, I feel fine with this decision. For reasons I cannot explain, though, my own baking undoes me. Don’t think for a minute that I have any baking talent whatsoever. Nothing I bake is above average, and when I let Adam do the mixing, the quality drops significantly. Still, while I have the will to turn down even the most tempting foccacia or creme burlee, I can’t stop myself from eating what I bake.
So I shouldn’t bake, right?
But my sons want treats and when I make them myself I don’t have to worry about nut contamination, I can use ¼ of the sugar, and I can swap in flours that aren’t white. It makes my sons happy to get cookies straight out of the oven, and our apartment smells fantastic while they bake. And since my oldest son has a school trip today, yesterday afternoon I baked his favorite oatmeal chocolate chip cookies to pack with his lunch. As far as cookies go, the ingredients aren’t too bad. Oats, whole wheat flour, butter, vanilla, milk, dark chocolate chips, and ¼ cup white sugar + 2 tablespoons of brown sugar.
According to the laws of JADA, if I took a bite of a cookie, I wouldn’t be in too much trouble. But one bite turned into two, then three. Then there was the cookie that broke so I had a piece of that. Then there was the second batch that came out of the oven and I needed to taste that batch, too. Over the course of an hour there must have been a few more nibbles, a few stray chocolate chips, and some crumbs that weren’t even big enough to count as bites.
Grabbing a crumb and a bite here and there is the worst way to manage JADA. It means I have no way to know how much I’ve consumed and, therefore, I can’t predict the rise in BG, which means I have no clue how much to bolus.
So, genius boss of myself that I am, I didn’t bolus.
Then about half an hour after the baking was done, I felt like my heart was beating too fast and I wasn’t breathing normally. I also had a weird feeling in my mouth. These are classic JADA symptoms. I began to monitor my BG.
5:24 BG 229
5:36 BG 232
5:53 BG 224
6:20 BG 179
6:40 BG 156
7:32 BG 94
At 94, I announced to Mike that I was finally back to normal. My screwy, remaining beta cells had woken up and secreted insulin. Sounds great, right? A normal BG without a bolus.
Not great. My own insulin had arrived three hours after I’d eaten the cookies. At that point, there was nothing around for it to do other than cause hypoglycemia. I mean, poor insulin, it’s like arriving at a party and finding out it was cancelled. What’s a hormone to do?
About two minutes after I’d announced the 94, I began to feel shaky. I started to sweat.
I was sweating so much I had a hard time getting the test strips out of the container without getting them wet. I dried a spot on my forearm with my shirt to test there because my hands were soaked. Arm readings tend to be higher than finger readings “How long until dinner?” I asked Mike.
7:42 BG 73
“About four minutes,” Mike said. I didn’t say anything to Mike, but I didn’t think I could wait. My appetite was as big as an ocean. I wanted to eat everything and anything. But I also just wanted to lie down and go to sleep. I was standing next to my desk and holding my glucometer. I decided I wasn’t going to sit down. Somehow the four minutes would pass while I stood there showering in my own sweat. I’d get to the table, eat dinner, and everything would be cool. Then I had the feeling that I needed to test again, and I wasn’t going to be able to do it unless I sat down. I gave in to myself.
7:46 BG 65
The same part of me that didn’t want to sit down also didn’t want to eat. I wanted to see if and when my body would respond with a surge of glucagon. How low I could go? I’ve dipped into the 40s without having any insulin in my body, hoisted by my own petard of a pancreas. I could feel that I was heading that way. Thankfully, though, Mike was putting dinner on the table and I was wise enough to head that way. I joined my family, and put an end to the hypoglycemia.
So, that’s my long-winded explanation of JADA. Make of it what you will. I’m off to start working on my JADA Wikipedia entry.