From Abby: My Stupid A1C That Makes Me Cry and is Stupidly Stupid.
(Note from Abby (actually, this whole post is from Abby, but this is her disclaimer part): The following story comes from Abby the PWD and not Abby the RN. Abby the RN is totally non-existent when I walk through a patient room door as a patient, even if it is in the office where I work.)
Today I had a really tough endo appointment. Really tough in a way that I never thought possible. I got my lowest A1c ever, and I was really bummed out about it. I thought the day I saw 6.5% I'd be planning a party and buying new shoes, but instead I got a sick feeling in my stomach and fought back tears. I know that you're thinking, "What the hey, I'd KILL for a 6.5%," and so would I, if I earned that number through good, steady, in-range numbers. But the way I "achieved" this number is through being way too low, way too often. Something like 30% of my sugars were under 70 mg/dL. In the last month, I've seen 40 mg/dL more times than I can count. I knew my A1C would be lower, and I was not excited about it.
I downloaded my meter at work last week to get a feel for what was going on pre-appointment. It hit me like a ton of bricks when I saw the printout, and all those numbers in italics. I proceeded to use the dreaded red circle technique (except I used a highlighter, and I highlighted the low numbers instead of the highs). The amount of yellow spots on that paper left me speechless. It was only then I realized how much work I had ahead of me. I immediately found a few patterns, adjusted some basals, and put the numbers out of my mind.
See, the issue is that I don't feel my lows until I'm in the 40s. And then I get hit with slight confusion and the inability to form coherent thoughts. My doctor explained to me this morning, that I've lost the ability for my parasympathetic nervous system to respond to low blood sugars - which is supposed to happen in the 50-60 mg/dL range. My body now skips straight to a neuroglycopenia response - or lack of glucose in the brain, which is very similar to having a stroke. Not saying it's the same as a stroke - the biology is way different - but your brain reacts the same way.
This is not good news. She assured me that if I let my sugars run higher for a few weeks, I should get the typical low feelings back, as my body adjusts to higher numbers. Unfortunately at this point in the appointment I wasn't able to come up with any good questions or plans. I kind of just sat there nodding and taking in what she was telling me. A quick physical and some refills later, I was back at my desk attempting to regain my "nurse brain."
A few hours (and lots of coffee later) I wandered down to the CDE office and they helped me adjust my pump to achieve some higher numbers without feeling like crap all the time, doing it gradually and safely. (CDEs are my best friend when dealing with my own diabetes, because I'm useless at fixing myself. Just can't do it.)
I think the hardest part of the day, aside from the whole "this is your brain on drugs" portion, was the reaction I got online from people when I announced my 6.5%. We work so hard every day for that dreaded quarterly report card, that we often forget to think about how that number came to be. I appreciate the love intended in the responses I got on Twitter and Facebook, but I just wanted to scream because this number shouldn't be so important to us! An A1C isn't meant to prove our worth as people with this stupid disease, it's a guideline to let us know how our long term control is. And that is not how we use it, at all. I'm the first one to admit that when I see an A1c under 7%, I think "Wow, great job!" even though I have no idea what influenced that number.
Anyway, I guess the moral of this wicked depressing story is that while we get a lot of criticism for A1cs over 7%, and an unfair judgement for over 8% - I think there is so much more to the story that we need to be asking of each other. A nurse in my office asked me, "And how do you feel about that?" after I told her about my 6.5%, and it made me feel so much better to be able to really talk about it.
So the next time you hear someone's A1C, whether it be 6.1% or 11.8% - ask them how they feel about it. Because there is more to diabetes than someone's A1C.
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Numbers, in diabetes management, need context. I hear you on this one, Abby.