I'll tell you up front. This isn't an easy post to write. It's about imperfection.
I don't like imperfection. Not when it comes to my son's health. His future.
Not when it's me who's been imperfect.
I've been thinking about this topic for a few days. And then I read my friend Wendy's post that hit just a a little too close to home. The post talks about diabetes complications, something I've been thinking a lot about lately. It's something non-D people don't think about much. They realize you need to worry about the low blood sugars, but the highs are bad too over a life-time. They can cause a host of problems including heart and blood vessel disease, neuropathy, kidney damage, diabetic retinopathy, damage to the feet and legs, osteoporosis, the list goes on. I once heard it described that every time your child has a very high blood sugar it's like tiny microscopic shards of glass are flowing through his blood stream and causing damage to his organs. Now I don't know if that's really true or not, but that visual has stuck with me, and every single time. I see a number of about 300 or higher on his blood sugar meter, I feel a knot in my stomach. I sick feeling of worry, and guilt, and second guessing. What happened? What did we do wrong? Did I not give him enough insulin with his last meal? Is there a problem with his pump site? Is he getting sick? Did I miss a #$%@ bolus AGAIN!! Did he eat something and not tell me? I guess that last one is the worst because he's staring to feel it too. He'll see the number and say, "Now don't get mad, mom," or "You're not gonna like this," or "I didn't eat anything, I promise!" So now I pushing that guilt and sick stomach on to him. He's 8. Just great.
But here's the worst part. It's mostly my fault. I'm slipping up. There, now you know.
It's not intentional of course, but I'm just not on my A game. And how can I not be when those tiny little glass shards are traveling through my baby's blood stream?? But I've missed boluses. It happens. I don't really know why or how. It just does. It's dinner time. I figure out the carbs for his meal, I'm busy getting everyone what they need, I get him his plate, make sure he has checked his blood sugar. And then somehow, after all that, carbs counted and all, the bolus was never given! BG 511. OR, I did give it, but something went wrong with the pump and I didn't pay attention to the alarm, didn't hear it, and then didn't find out for another hour or two (or four) that he didn't get the full amount he should have. BG 378. Or how about those times when he takes a bath, and takes off his pump, and then comes out and eats dessert, and I dutifully have him check and bolus, only to find out later he never reconnected his pump. BG 450.
Our diabetes online community (DOC) is such a huge network for support. A group to ask questions of, commiserate with, and just in general to feel like you're not alone. There are a couple of funny acronyms that we use that have meaning only to families with D.
One is SWAG - Scientific Wild Ass Guess.
You use that when you're trying to make your best guess on the carbs for something that's not easy to know like maybe a casserole or something homemade.
Another is YDMV - Your Diabetes May Vary.
It means each persons diabetes is different. One child may react to a specific insulin one way and another may react differently. One may have a hard time dealing with something like pizza while another may have no trouble with that but marshmallows cause their blood sugars to soar. YDMV.
Well, I have a new one. I don't think it applies just to me. I know we all go through this from time to time. It's not a pretty one. I guess that's good because it doesn't stand for something pretty.
SYDCMS - Sometimes Your Diabetes Care May Suck!!
Mine definitely has lately. Eleven BGs over 300 in the last 5 days. Six of those were over 400. Why is this happening? Not sure, but here are some guesses:
1. I haven't been keeping up with my logs. No logs means I can't see patterns and make
2. I haven't been sending in numbers to the endo like I used to. I don't think I need to do
this as often as I used to, but if I was having bad numbers, I would normally send them
in. See #1!
3. We switched to a new infusion set - Orbit Micros. We are getting a lot of occlusion
alarms. I'm still trying to troubleshoot.
4. We just started a vial of Apidra to see how it works ???
5. I need to make some basal changes. See #1.
So, yes, imperfection. BIG TIME. And guilt. BIG TIME. And WORRY. BIG TIME.
And just SYDCMS.
BUT, I know there is a flip side to this one and that is:
SYDCMR - Sometimes Your Diabetes Care May Rock!!
I've seen lots of you there. You have inspired me many times before. And guess what, I've even been there myself now and then. So I know it's just a matter of jumping back on the wagon and getting it together again. D can just take a lot out of you. It gets you down, and gets OLD, and gets tiring! And it gets way too routine. I think that's a big part of the problem. It's easy to let things slip. I've let things slip. I've been imperfect. I know no one is.
But those glass shards . . . Ugggghhhhh!!!!