24 March 2012

CGM & Miss N, revisited

I once posted on this blog about the importance of access to CGM (continuous glucose monitoring) for all type 1 diabetics. I shared the frightening string of lows she experiences at night, and how little sleep I manage as a result. Since then, we've been fund raising for this much needed (and very expensive technology). For those of you who know me, you know how far outside my comfort zone this whole idea takes me. Then again, the idea of losing my daughter to a hypoglycemic seizure or coma sits so much further outside that comfort zone, it belongs to another universe entirely. I'll do whatever I need to to ensure that doesn't happen.

Before diabetes, a term Brother Bear both loves and resents in one breath, I mostly blogged about health care in our country. Most of my friends know I've long been a proponent of nationalized health care, and resent the fact that the size of one's pocket book determines their right to quality health, pain relief, and routine care of chronic conditions. My first trip down the road of cancer came at a mere 21 years of age, largely because of the negative effects of poorly managed hemorrhagic cycles resulting in a stroke at the age of 17. My pocket book never really had a chance at growth having started out on the runt end of all things medical. I've worked as a volunteer advocate, as registered nurse, as a teacher in title I schools, and have come to recognize first hand how the barriers to basic care, prevention, or treatment of chronic illness serves as the foundation of so many other problems in our society. Heck, as a single mom, I've lived it. All three of my children have autoimmune illnesses, and I still struggle with my untreated back injury from five years ago.

I've lived with the consequences of not being able to treat illness, but diabetes presents a consequence with which I cannot live. Untreated, diabetes means death. Sure, insulin is the life saving part of that equation, as is knowledge about eating a healthy, balanced diet, and how to count carbs, etc. That said, there are important tools that factor into know how much insulin to give - because insulin is an incredibly dangerous drug. Tools like blood glucose meters, insulin pumps, and yes - a continuous glucose monitor which works by reading interstitial (the space between cells) glucose levels and converts that to a blood glucose reading, every five minutes. Therein lies the beauty of this system - every five minutes. Any lab taken at your doctor's office, the hospital, a health fair, one reading on a glucose meter, is but a snapshot of that moment in time. Science has developed all sorts of tools to try and give us more of a panoramic view - a look at what happens over time. The hemoglobin A1C test, used to gauge diabetic health and management, indirectly looks at blood sugar values over a three month span of time. We like panoramic views because they give us more of the whole picture, let us see patterns, allow us to be more informed so the choices we make and the actions we take are more likely to succeed.

That is exactly what the CGM does, gives readings every five minutes so the diabetic can see trends in glucose levels and know, "Oh, I'm at 180 and going higher from the looks of things, I better correct." More importantly, we can tell it when to alert us. If 70 is considered low, I want to know when Miss N is 80, and whether that's on its way down, flat, or trending upward. If I receive an alarm that she's 80 and the graph predicts her BG will fall lower, she can eat a healthy snack. No need for juice or pure glucose, no unfortunate loss of neurons because we failed to catch it until she was in the 50s or 60s. Amazing, right? Now think about having that tool at night, when she doesn't feel or wake up from her lows, when - without a single soul the wiser, her BG drops low enough for her to have a seizure or lapse into a coma. That's what I give up sleep to avoid, but I do it imperfectly because I'm shooting in the dark. When do I test, how often, which way is it trending, how do I know?!

I can't for the life of me understand why this of all tools in the diabetic's arsenal is least often covered. This is a crazy important tool (at least in my opinion, and many other parents of type 1 diabetics.) So, outside my comfort zone I go. I've been working at it like crazy, in fact, and thanks to the support of friends, family, and perfect strangers, we're getting there. As of today, we've raised $1590 - 32% of our goal!!

Curious about how we're doing that? You can visit out donation page N's New Lease on Life or go to our facebook community page CGM & Miss N: Raising Hope Please feel free to share these pages, we're trying to get them out there, and are so, so close.

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