My A1C Champion friends

 

 I truly think type 1 and type 2 diabetes should have completelydifferent names. Yes, they both have “insulin inefficiency” and wacked out blood sugars in common, but their causes and related health conditions are different, and equally significant, managing the two are generally far from the same thing, and our lives with diabetes are far from the same. 

I know this well, I don’t need confirmation, yet yesterday while on the phone with three of my closest friends with diabetes I was surprised by how acute and visceral this knowledge is becoming for my type 2 friend who is learning to use an insulin pump. “That freakin’ daily log I have to keep now” she said. “I’ve worn my hands out! And, I’ve never been so attached to glucose tabs before! If I’m out gardening I’m going low. Last night I was 71 before going to bed. What do I do?!” Ah, welcome my type 2 to my type 1 world.

We four met as A1C Champions: We travel around the country giving educational presentations to fellow patients, sharing our personal story of living with diabetes hoping to inspire our audiences to better manage their diabetes. Most of the Champions have type 2 diabetes, yet not surprisingly of these four friends, three of us have type 1. Not surprising because for type 1s there is an intrinsic bond as pervasive and invisible as our condition; we see our mutual struggle in each other, we know intimately the burden we manage every day, and, that no one else sees it. That said, we three type 1s adore our type 2 friend. She is one of the most open, caring, curious and both emotionally and diabetes-intelligent people I know.

So, we were all on the phone yesterday at the request of our type 2 friend who was seeking our type 1 counsel about her pump. Her blood sugar control is far better overall, but “lows” are more frequent. “Before (15 years worth) I rarely went below 85 or 90,” she said with tempered evenness. “Now about every third day I’m going low! Even shopping can make me go low!! TWENTY MINUTES IN WALMART AND I’M REACHING FOR THE GLUCOSE TABLETS!!! 

This will straighten out. She is working with her endocrinologist to refine her basal calculation (the amount of insulin the pump delivers throughout the day). Also, since her blood sugars now hover at a lower level than they used to, she’s paying more attention so that they don’t go too low. 

My friend has discovered through this pump experience a new understanding and respect for what type 1s live with every day, pump or no pump. And I was made more aware through our conversation of just how truly unknowing others are of what we deal with everyday, even those with type 2 diabetes. 

So there we were, three type 1s throwing out ideas to help our type 2 friend with her pump until she sees her diabetes educator again. “Eat the same three meals, and only three, every day for a week to figure out your basal rate.” “Get a book on pumping by John Walsh or Gary Scheiner and devour it cover to cover.” “Make sure you’re using multiple basal programs for different hours of the day and night when you need varying amounts of insulin.” “Don’t just eat glucose tablets if you’re low, they don’t last that long. Make sure you eat some protein too.” “Well it’s a toss up whether to detach from the pump when you’re going low to stop the insulin drip or eat a snack. Of course that could lead to weight gain.” And finally, “Accept that even if you do the same thing every day your body will not act the same way every day.” The true mantra of type 1.

I don’t write this to discourage you if you’re a type 2 thinking of a pump. My type 2 friend is definitely benefitting. Her blood sugars are lower overall, she is taking less insulin, this is allowing her to lose some weight and when not worrying about lows, which will rectify themselves once her program is worked out, she feels better and more motivated to do better seeing her numbers improve. Also, she has a real awareness now that her actions affect her results. “It’s a real eye-opener to see on paper that what I do affects everything,” she told us. “It’s made me more judicious about what I eat. I see so clearly now that I’ll have to add more insulin if I eat that. It’s made me see my management all quite differently.” That’s indeed good news.

An insulin pump, I’ve been reading in preparation to go on one myself next year, typically reduces the amount of insulin one needs. Something about how it saturates your cells with insulin and mimics the normal functioning of a healthy pancreas. For Type 2’s the insulin requirement can drop by a third or nearly half. My friend used to give herself 4 units of Apidra (rapid-acting insulin to cover meals and make corrections) to come down 80 points, now it’s more often 1 unit. 

I also had a second awakening. Hearing my type 2 friend’s astonishment and growing understanding of how a type 1 lives – the constant attention our condition requires – and her experiential understanding now of what my type 1 friend expressed as, “I have a constant awareness of lows, 24/7 that absolutely borders on fear,” I have an even greater appreciation for the hardship I live with and how well I do most days (with minimum moaning and groaning.) 

As my type 2 friend said, “This is a big learning curve let me tell you!” You’ll find no argument here.

Depending upon the day, my mood, who I’m with, the conversation, whether or not my oatmeal burned that morning, my feelings about living with diabetes vary. Some days are almost a breeze, other days I’m exhaustedly fed up with all it takes and soooooo annoyed no one really gets it.

With that, I wanted to spotlight these diabetes musings that reflect only two of the many sides of living with diabetes. One is a page from my book, “The ABCs of Loving Yourself With Diabetes,” which coaches you to more often engage your positive emotions – like kindness, forgiveness, strength, courage and appreciation – to manage your diabetes, and your life, with greater ease and happiness. It’s featured in the current newsletter from TCOYD(Taking Control of Your Diabetes.) TCOYD, headed by Dr. Steven Edelman, who has type 1 diabetes and was named Educator of the Year this year by the American Diabetes Association, brings informative and inspirational one day health fairs and conferences across the country to people with diabetes.  

Then two weeks ago, Catherine Price, a blogger over at A Sweet Life, shared her story of living with diabetes in the New York Times, “Thinking About Diabetes With Every Bite” and it was as if she was telling my own tale: The constant rigor, calculations, analysis and invisibility of living with diabetes, particularly type 1 diabetes where you must inject insulin and test blood sugars several times a day, every day, to manage it.

For me, both sitting in the positive and dealing with the sometimes grinding daily tasks co-exist – sometimes simultaneously, sometimes in parallel and sometimes at unsettling right angles depending upon the day. But always like a chronic condition they are there, the many sides of diabetes rising and falling, ebbing and flowing, expanding and contracting as we learn, move, grow, expand, collapse, relapse and press on again.