Diabetes: The Invisible Disease

I’ve had a brutal three weeks. Let me share it with you:

I switched from multiple daily injections to an insulin pump about three weeks ago. I had spent 23 years on injections, and my level of control was pretty consistently good with it. I have fallen into the category of “tight control” for most of my diabetic life. But with all of the major pump manufacturers gearing up to introduce closed-loop systems (pumps that integrate with CGMs to actually adjust insulin levels to keep the user within a specified target range), and with the advice of my doctor that a pump means a better, more flexible way to manage insulin, I took the plunge.

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The troubles started with the first infusion set. On my second night with the pump, an occlusion alarm woke me up, and my CGM blood sugar was reading 381. A fingerstick showed I was actually at about 420!! So, I changed the site. The replacement lasted three days, but my numbers were running significantly higher near the end of the last day. The next infusion set worked for the first one-and-a-half days. Then, I once again saw the sudden surging of blood sugar on my CGM, unexplained and totally out of the blue. I gave myself correcting insulin doses, and they had no effect. I pulled the plug when my blood sugars reached 300 (no occlusion alarm had gone off, but it would have soon enough).

I disconnected the pump, and gave myself a SHOT of insulin. The shot worked, and after an up-and-down day and a half, I was back on injections. I stayed with that until my endo gave me some shorter 6-millimeter cannulas to try. I tried them. The first one worked. Then I changed the site, and that night, bam, my numbers were shooting up again. This time I called it when I hit 200, not wanting to go through the extreme highs yet again! Again, I pulled the pump, and resumed my old injection regimen. It again took two days to stabilize my numbers. At this point, I was ready to throw the &*%@!#!# pump across the room!

Now, I am on my second set of the contact™ detach cannulas — that is, the steel needle cannulas that often work much better for people like me who seem to have a preternatural talent for bending the plastic variety (leading to the kind of occlusions I was experiencing). So far, so good, and in a bit of a surprise, the steel needles are WAY more comfortable for me. But emotionally, I am just SPENT from these three weeks!!

OK, here’s why I wrote all that. If you have diabetes, you understand it. You actually know the definitions of what I just said, and more importantly, you understand what it means to live them; to live with wildly fluctuating blood sugars; to live with total uncertainty about how your body will respond to food, to the point where you look at a ham sandwich as your enemy; to live with that sinking feeling that things might NOT improve. You know how tiring it is, how physically depleting it can be, and how disruptive it is in your life. You know, because you have this same invisible disease.

Invisible can feel lonely
Having an invisible disease has some advantages. We don’t stand out in a crowd, and so we’re not faced with the obstacle of having to CONSTANTLY explain ourselves. We don’t have to feel “different.” But there is a downside, and I experienced that tonight.

While I’m cautiously optimistic that the steel cannulas will solve my issues, I am, as I said, feeling thoroughly burnt out from my experiences. Tonight, it showed on my face at work. My colleagues were asking about it, and after starting to give a list of definitions to one well-meaning colleague (well, I’ve been transitioning to an insulin pump — a pump is a blah blah blah — and the damn thing has been having occlusions constantly — an occlusion is a blah blah blah. My blood sugars have been soaring above 350 — so the usual range for blood sugar is blah blah blah…), I realized that it was more work than it was worth to try to catch him up on what it all means. I desperately WANTED to share my experience with someone, but there was just no way. This invisible thing I live with, and everything that goes with it, felt like an island that nobody around me could possibly find.

At times like this, it’s wonderful to have resources like this one, and support groups, and online forums, and places like the diabetes center I go to. It helps this disease feel less like an island. But out in the world, unfortunately it can feel a little lonely sometimes.

Four major research projects to test and fine-tune several fully automated artificial pancreas systems are getting underway. Bookmark DiabetesSelfManagement.com and tune in tomorrow to learn more.