Life in LADA land

Living Philippians 1:6 with type 1.5 diabetes

The unanswerable question

I keep getting the same question from people about my diabetes. I’ve written about this before but I’m going to do it again because at heart I am an educator. So now you get a little bit of education about diabetes. Again.

There are variations on the question, but generally it is the same question. It goes like this: “Is your diabetes getting better?” or “Do you have better control over your blood sugar these days?” . While I would love to be able to say “YES!” to both of these questions, the reality of it is that No, it isn’t getting better, nor will it ever get better.  But that would sound really hopeless to someone who does not understand this disease and I don’t want to simply leave them thinking I have given up or am too stupid to get better. But type 1 diabetes never gets “better”.  Once a pancreas has stopped working, it doesn’t regenerate.  Losing weight won’t make it go away, nor will exercise, or eating all the right foods, or any of those miracle “cures” that keep popping up on my facebook page.  Even Type 1s who manage it really well and keep their A1c in line with recommendations struggle with it at times, simply because we cannot know how our body will react to anything – food, stress, activity, whatever.  There is no such person as a perfectly controlled type 1 diabetic, and certainly  not me.

One of the problems with this question is that it is often asked in a situation where a long answer isn’t expected or possible.  I am trying to figure out a short, one to two sentence answer to it, which will educate others to the nature of diabetes (and perhaps other autoimmune diseases like it) and also make them aware of what all diabetics deal with on an everyday basis. I’ll  suggest some possibilities here, but if anyone reading this has any other suggestions, please pass them along. I can always use the help!

So one way to answer this question is to tell the person that “I will never be able to duplicate what my body was created to do on its own, but I do the best I can. Everyday is a new challenge and I can’t necessarily count on the fact that doing the same thing I did yesterday will have the same effect today.”  At this point, I have probably lost the person I’m talking to and they are wishing they had never asked……  Probably I should just stop after the first statement.

Another way to answer the question is to say “I work hard to control my blood sugar, but I cannot predict how my body will react to anything, so it’s all just guess work.”  Wow, that makes me sound like an idiot.  But honestly, that’s the reality of it.  I can set up basal programs in my insulin pump for weekdays, weekends, swim days and other days, and dosing schedules for meals at different times of the day, but none of these work perfectly all the time. After all, there is pizza in my life.  And Chinese food.  These setttings are just the best guess I can make in general (with the help of a great advisor), and the rest is left to me to correct for the unpredictable stuff that happens.

The best answer to this question I think is this: No diabetic (whether type 1, 1.5, 2, Gestational or whatever) will ever be able to control their blood sugar perfectly. We are fearfully and wonderfully made (see Psalm 139) and as good as the technology for handling diabetes is (and it IS great and getting better everyday), I will never be God. (Good thing, right?)  My pancreas stopped working and I cannot regenerate it nor recreate what it did before Thanksgiving 2010. (Yep, my 3rd Dia-versary is coming up in a couple of weeks. Oh joy.)  So what is the right question to ask a diabetic?  Try these: “What are you learning about yourself as you deal with diabetes everyday?”  or “How are you handling the time and attention that dealing with diabetes takes?” or “How can I be praying for you?”  “Where do you find encouragement and support on the hard days? Do you need someone to call, or text or email during those times?”  Or just simply, “How are you feeling right now?”.

I know the impossible-to-answer questions originate from good hearts who care about me and who truly do want to help.  So I don’t say all this in resentment or derision.  I say it as a public service announcement.  Hopefully, I can take small steps to educate others about the nature of this disease, which relates to many other conditions as well.  If that’s true, I’ve accomplished something good here.


A Breakthrough

This morning as I sat in church, I felt Jiminy (my Dexcom CGM) buzzing me that I was over 200.  Right. Just what I wanted to know. But I found myself amazingly calm about it, pulling out my meter, checking to confirm that indeed Jiminy wasn’t imagining things (indeed, it was 248….).  I was still calm as I reached for my pump, dialed in the numbers to deal with this high blood glucose number and then just went back to the hymn we were singing.

Now, that might not sound like a big deal to any of you.  Isn’t that just what you do to deal with diabetes all the time? Well, yes and no.  The difference in this scenario wasn’t my actions, it was my reaction. I did not find myself yelling internally “HOW IS THIS POSSIBLE? I DIDN’T DO ANYTHING DIFFERENTLY THAN I DID LAST WEEK AND LAST WEEK I WAS FINE!!! I’M TRYING TO WORSHIP, AND I DON’T WANT TO THINK ABOUT THIS!” or other such things.  I just dealt with the number and moved on.  That’s what other diabetics tell you to do when they write advice to new diabetics, and it’s what a good doctor or diabetic educator will tell you to do, but most of us know that it is NOT what we do all the time. We will eventually deal with the number, but not without some kind of hissy fit beforehand outwardly (I have been known to yell at my meter when at home) or inwardly.

This represents something big in my life, I think. I might be wrong, but as I look back on the last week or two, I think I see a pattern of getting less emotionally involved with the numbers on my Dexcom or meter.  I think the best way to describe it is that I don’t feel at war with diabetes.  Every high blood glucose reading isn’t a battle.  Every low isn’t a defeat. They really are data, and I have the ability to deal with it and move on without getting emotionally invested in it. I still try to figure out what led to the number, but it isn’t accusatory anymore.  At least for now.

I don’t really know why this has happened. Except that of course I have been praying for a better attitude toward diabetes and others have been praying for me.  I have to say though that it feels really good, and really hopeful, to have had this breakthrough.  My prayer now is that it will be a real change and not just some temporary lull in the action.  I’m in this for the long haul, since diabetes isn’t something that ‘gets better’ (see my next post for more about this).  And wasting that much emotional energy on something that simply is not going to go away is not a good way to live.  Thank you Lord, for the grace that has come from you in this.  I know it didn’t come from me.

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I know I am low when…….

In honor of World Diabetes Day (who  knew there was such a thing?) I am following the suggestion of a friend for a post triggered by something that happened at the start of the day today…..So here goes. I know I am low when……….

  • I enter the church where I work and forget to turn off the alarm system.  I was only reminded of this after a couple of minutes when it started beeping loudly, just before it alerted the police to an intruder. Of course I was at the other end of the hallway by that time and had to race to get to the alarm box in time.  My knee was not happy about this sudden exertion…..
  • I have no idea what you just said and make some really lame comment on it, trying to make it seem like I am in full control of my senses.
  • I want to put my head down on a table, or in my lap and stay there until the low passes.
  • I want to eat every carbohydrate based food within sight. Or out of sight.
  • I feel a compulsive drive to finish whatever task I am doing BEFORE treating the low.
  • My head feels like someone replaced my brain with air bubbles.
  • I have an almost irresistible urge to nap. This only happens with a more serious low (less than 55), which thanks to my  Dexcom continuous glucose monitor, doesn’t happen all that often, since it warns me when I’m heading south. If I can resist the urge to finish whatever I’m doing (see above) and eat something, I don’t feel like a complete zombie.

So, Happy World Diabetes Day everyone!  I can’t say it’s a day I really feel like celebrating, except to declare my commitment to not let this disease rule my life.

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