It’s not normal

Let me be clear from the start. I am thankful for every piece of medical equipment, technology, milligram, microgram, and unit of medicine I use. I am fortunate to have reasonable access to almost everything I need. I am blessed even to be alive. I mean, it wasn’t all that long ago that we didn’t live very long with diabetes. So I am grateful for all of it.

But almost anyone with diabetes has also experienced those pokes that hurt more than usual or that shot that strikes a nerve. Or it could be an infusion set or CGM sensor that feels extra sensitive or rubs the wrong way. Either a dull ache that lasts or sharp electric jolts of pain that stand you bolt upright. Maybe it’s in just the right spot that you can’t sleep normally, but you forget until the hurt wakes you up. Ooh! Let’s not forget the notorious gushers! They are rare for me, but wow, are they memorable.

I always feel conflicted when this happens to me. Because diabetes supplies are expensive, even with good insurance coverage, I have to be suffering pretty bad before I decide to swap it out and put a new infusion set or sensor in. So I usually end up coping with mild pain for days on end. 

Times like these are harsh reminders that there is nothing normal about stabbing ourselves with sharp metal objects and bleeding (or peeing!) on things to take care of ourselves. On the contrary, it is crude and barbaric.

I understand it is necessary right now, and things could be much worse. But it bothers me that our current brutal therapy is accepted without much thought. Maybe because there has been so much progress over the past few decades. I understand and, again, am grateful for every advance I’ve seen.

But we have to keep the pressure on. Even the most advanced technology and therapy we use today is no comparison to an endocrine system that works as designed. So use everything you can, and appreciate where we are today but do not settle!

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Scott K. Johnson

Patient voice, speaker, writer, advocate. Living life with diabetes and telling my story. Senior Communications Manager for Roche Diabetes Care (All opinions expressed are my own and do not necessarily represent the position of my employer).

Diagnosed in April of 1980, I recognize the incredible mental struggle of living with diabetes. Read more…