Life in LADA land

Living Philippians 1:6 with type 1.5 diabetes

P. S.

I’ve been continuing to think about yesterday’s post and the questions people ask us about diabetes.  In the middle of the night last night, after being awakened three times by my CGM buzzing and then beeping to tell me my blood sugar was low, I had these thoughts:

I think one bit thing that people don’t understand is that diabetes is not a disease that gets progressively better or easier to deal with the longer you have it.  I’m sure I have said that before on this blog.  However, when people ask me if my diabetes is better, I get the feeling they don’t realize that.  Every day really is a new experience with diabetes.  I wish I could just plug some numbers into my insulin pump, dial in the carbohydrates I eat, and expect my blood glucose to always be in a good range.  I love my pump, and it is a HUGE help, but even though I DO plug numbers into it, and dial in the carbohydrates, my body is not static.  There are all kinds of factors that affect how my body reacts to the insulin it delivers.  So while I have learned a lot about myself and how to manage my diabetes, it’s a moving target.  There is no magic combination of insulin/carbohydrates/exercise/medication that will work all the time to keep my blood sugar in a good target range.

Think of it like a bicycle ride.  I love that when you work hard to get up a hill on a bicycle, you get to coast down the other side.  That never happens with diabetes.  There is no coasting.  It’s an uphill ride all the way.  Some days the hills are easy and mild.  Other days it feels like you never get to the top of the mountain.

I’m not saying this to be overly dramatic or to gain sympathy. It just is the reality of every type 1 diabetic’s life.  I’ve been thinking too about what questions I would LIKE for people to ask, or what questions I could actually answer.  One might be: What have you learned about yourself because of your diabetes? or maybe, What has God taught you recently as you have dealt with diabetes?  Because the good news is that I am indeed always learning.  About myself, about diabetes and how to manage it, about my need to depend on God’s strength to deal with the uncertainties and frustrations of everyday life now, and about my weaknesses (and there are a lot of these…..).  But really, no matter what you might ask me, I really do appreciate the concern that is expressed, even if it is the ‘wrong’ question!

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The unanswerable question

There is a question that I suspect many of us get as diabetics.  I got it last night, and I cannot count the number of times I have been asked this by well-meaning, caring people.  What’s the question? “So, how is your diabetes doing?”

I have no idea how to answer that question.  My diabetes seems to be thriving?  My diabetes is still there and always will be?  My blood sugars have been all  over the map some days and perfectly controlled on a few?  The possibilities are practically endless.

But I know that I can’t give a smart-aleck answer to this well intentioned question.  The problem is that they don’t have time for a full answer, and the questioner doesn’t realize how complicated dealing with diabetes is.  Take today for instance. Here’s what my answer would include (and this is only the stuff I can remember!):

I started the day great, though overnight my CGM buzzed me a bunch of time thinking my blood glucose had bottomed out at below 55, when it was really 120.  Swimming went really well and I didn’t go low afterwards – a rare victory!  My blood glucose then tanked briefly while I was setting up for a meeting, but recovered on its own.  I went out to lunch with a friend and thought I dosed well, but after a brief stroll through Target, and while driving home, my blood glucose dropped pretty quickly.  I probably should have stopped and waited to drive the rest of the way home until my blood sugar came up, but all I could think about was the safety of home.  I made it. And thanked God (really!) that I did.  I ate a snack and  felt much better after about an hour when the hangover from the low subsided.  Then while I was cooking dinner, my infusion site (the place where my pump tubing connects with my body) got really, really tender and sore.  I have no idea why.  So that meant I needed to change that out and hope my bg didn’t soar upwards because of bad insulin delivery.  The rest of the afternoon went fine, and now after dinner, I am sitting at 201, waiting for the insulin to kick in and bring it back down to range. I’ll have to keep an eye on it to make sure all is well.

So you see, that’s the kind of answer I would REALLY like to give.  But that’s not likely what people want to hear, and I can actually envision their eyes glazing over, so I end up saying something inane like, “there are good days and bad days”, or “I’m doing fine, thanks”.  I need to figure out a good answer that really sums up how diabetes affects me.  I think one of the things that is hardest for me to realize is that people think I’m going to get better. I’m pretty sure I’m not.  My beta cells are not going to miraculously regenerate (barring an actual miracle, of course!).  But I don’t want to sound that hopeless.  So I’ll keep working on my answer. If any of you have any suggestions, I’d be happy to hear them. Thanks in advance for your help!

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