Life in LADA land

Living Philippians 1:6 with type 1.5 diabetes

Confusion

Yesterday was a dark day for me.  It shouldn’t have been, which is what made it so confusing.  I saw my doctor in the morning, which I actually look forward to, since he is so encouraging and supportive and caring.  I wasn’t even really bothered by the fact that I had to fast so that I could have blood work done.  It all started out so well…..

The first thing that happens at a doctor visit is the weigh in.  Always a shaky moment for me. But yesterday – victory!  Down 3 pounds!  That felt good.  The next significant thing (after the list of meds, the diabetic foot exam, BP reading, etc) is the A1C test.  First of all, can I just say that the lancet used is like a sword?  My doctor’s office has switched to a lancet that is more humane that the old one, but still……OUCH. For someone who pokes her own finger 6-8 times a day, it’s really unnerving to have someone else poke it with a lancet the size of a butcher knife (well, that’s what it feels like anyway. Perhaps I exaggerate….).  Then comes the waiting for the number.  My report card. My indicator of how well I am doing at managing this disease. Or at least that’s how I see it.

6.0.  Wow, 6.0! I should be jumping up and down!  My doctor and my CDE should be jumping up and down!! Why aren’t we?  Now we have come to the source of my confusion and the darkness of yesterday.  6.0 is a number I have been looking at and assuming I would never achieve.  (Non-diabetics have A1Cs below 6.  The ADA recommends an A1C below 7.0 for diabetics. The A1C is a measure of a 3 month average of blood sugar and is the best measure we have at this point of how well controlled blood sugar is.)  So why were none of us jumping up and down about this result?  6.0 is a new low for me. I have been running around 6.2-6.5 for the last year or so.  So why the glum faces?

It’s because of the cost of that number.  I have to say, now that I think about it, in the light of a new day, I am completely overwhelmed by how much both my doc and my CDE care about me that they were NOT rejoicing for an A1C of 6.0. This has really just occurred to me at this moment.  The fact that they understand what this costs me on a day to day basis and are concerned that it is not ideal is humbling.  Let me explain:  In order for my A1C to be at this low level, I live on a knife edge.  In a normal person, insulin and other hormones keep your blood sugar at a relatively even 100, with small excursions upward after meals.  For me to maintain anything like that, I live with the possibility of plummeting well below 100 much of the time.  I simply cannot duplicate the micro-changes in blood sugar that the pancreas and liver can. I have amazing technology connected to my body and I think I use it pretty well. My pump can deliver insulin in increments of 0.025 units.  I have a CGM that tracks my blood sugar every 5 minutes 24/7 and lets me know what my BG is and what direction it is headed all the time.  I have amazing advisers who help me think through all of my treatment options and to tweak settings and meds so that I can do better all the time. But I am not God and I cannot regulate my body like He designed it to be regulated.  More often than not, if I am sitting at a lovely BG of 100-110, I will end up heading south with any kind of physical exertion or delay of a meal.  (Sidebar: Shopping is my nemesis.  A trip to Sam’s sends me plummeting downwards into the depths almost every time.  It’s simply ridiculous.)  These lows that sneak up without warning take their toll.  If they stick around for any length of time, I end up with a sort of hangover that makes me feel bleary for hours afterwards.  Even if it is a shorter term low, it will often change my plans since I can’t drive or think clearly or do anything requiring physical strength or coordination.  Hypoglycemic events are the bane of every diabetics life.

That is the cost of a 6.0.  And honestly, it’s not a cost I’m very happy with.  But here’s the real problem.  I really HATE it when my blood sugar heads out of range on the high side.  I find that highs are harder for me to deal with than lows.  I am not patient when it comes to waiting for insulin to deal with the high BG. I want it to act NOW please.  But it typically takes 45 minutes to an hour after dosing with insulin to see any real drop in a high BG, and depending how high it was, it may take 2-3 hours (or longer) to get back in range.  This frustrates me more than I can express.  Most lows are quicker to resolve to a safe level, as long as I eat the right thing.  So honestly, I am torn between the danger of living so close to going low and the dread of going high, and my strong tendency is to run low to avoid the frustration that the highs bring.

So what do I want?  I want the wide swings of my BG to stop. I want to see lovely gently curving lines between 120-150 mg/dl all the time on my CGM.  I want to never go high after a meal, to never go low when I shop, and to be able to live my life without interruptions brought about by diabetes.  Wow.  Well, that’s not going to happen.  So what do I really want?

I want to be ok with letting my BG go higher than I think is good.  I want to be satisfied with a 130 or a 150 because it is in a safer zone than a 105.  I want to be more patient when I go high and give the insulin a chance to work before ranting and raving about it. I want to live my life with this disease in the background, not the foreground.  I want to be content with the way God has made me, faulty pancreas and all.

In the light of day today (though ironically it is a cloudy day when yesterday was beautiful and sunny), I can see that the stubborn high I was dealing with all afternoon clouded my thinking and made me downright depressed after my doctor visit when I had no reason to be.  I see now what I missed: That God has blessed me with caring, compassionate people who look after my health with me and who want the best for me. They acknowledge the hard work it has taken to get to an A1C of 6, but also take into account the price of that, and know that overall, life will be better for me if I ease up a bit.  And I see that God is teaching me to be content in ALL things, not  just when I feel good, or when my BG is rolling along cooperatively.  That contentment is beginning to creep in today.  It has to come from His work in me, for I know that I do not have it within myself to generate it.  I need to say with Paul, the apostle: “….for I have learned in whatever situation I am to be content…..I can do all things through him who strengthens me.” Philippians 4:11,13

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Sunday ramblings

This is just going to be a scattered collection of thoughts from the past couple of weeks.  None of them is sufficient for an entire blog, and they are not connected. So, here goes.

  • During the Lord’s Supper this morning, when our Pastor was talking about the cup as a sign of the blood shed for our sins, I realized that every day, I poke my finger and test my blood sugar about 6-8 times.  I can use those moments not just to figure out if I am in range or not, but as a reminder of that Amazing Love that led Him to go to the Cross for us. It might also help me with the emotional roller coaster that often goes along with those numbers, judging myself if they are low or high, or second guessing why the number is what it is.  I am sure that God is the ONLY One who can help me deal with this.
  • I’m reading Kerri Sparling’s book Balancing Diabetes.  It is even more helpful than her blog (which is saying a lot, since I find so much encouragement and help from the blog).   My favorite paragraph so far: “….I have the best diabetes management moments when I feel both emotionally and physically equipped to do what needs to be done. If my head is in a good place, I’m more apt to check my blood sugar and react to those numbers in a healthy way. It wasn’t until I had access to other people living with diabetes, by connecting through the Internet and by way of diabetes conferences, that I was  able to peel off some of the adjectives I had previously stuck to my blood sugar results and to see them simply as what they are – data points, not measures of my self-worth.” This is so true.  I need people around me to remind me that a blood sugar of 55 or 355 is not a measure of success of failure, but of blood sugar and nothing else. I can’t wait to read the next chapter.
  • The other thing I love about this book is that in an earlier chapter, Kerri interviews people who had been diagnosed with T1D as a child, and those who, like me, were diagnosed as adults.  I appreciate the confirmation that taking on this new responsibility of managing diabetes is daunting to those of us who remember life before T1D.  I can’t tell you how often I have thought how nice it would be to turn back the clock and go back to life without diabetes.  It’s nice to know I’m not alone in this.
  • The longer I go without swimming in the morning, the harder it is for me to keep my blood glucose in range.  This is great motivation to get myself out of bed at 6:30 am.
  • Emotions definitely have a physiological effect.  My blood sugar tends to go up with strong emotions, whether it’s sadness, happiness or worry.  It’s a drag, I must say.  That’s all I can say. I can’t find a good lesson for this one.
  • I have had a few amazing God moments lately, when circumstances worked out in ways that only God could have orchestrated.  I really love this.
  • Being disciplined is hard work and exhausting.  And I can’t keep it up indefinitely, unfortunately, as I am learning.

OK, that’s it for now.  The ups and downs of my life continue and diabetes seems to contribute more than I would like to these ups and downs.  But I am determined, and know that I have the power I need in Christ, not to let it overcome me.

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