Setting the Curve

A week ago we were filled with anxiety, dreading Monday and the insertion of the Dexcom. Seriously. The weekend was not fun.

What a difference a week makes. While Hannah is not 100% sure about the CGM, especially the removal and reinsertion, she is amazed by the info we have gained that we couldn't have known without it.

It makes me wonder how PWD did it back in the dark ages when all you could do was pee on a stick and guess how much insulin you needed to inject. Mind blown over how technology can give us the tools to learn and tweak the dosage schedule to gain control over the invisible monster.

Zach ( Hannah's oldest brother, a biochem major at Marietta College, for those of you who don't know us in real life;) ) just finished a pharmacokinetics course in a toxicology class he is taking and it explained the process of micro-bolusing the dosages of medication in order to utilize them most effectively...he even drew us pictures. Those of you know know Zach have no problem imagining this process, right?

The crazy cool real life application is that by the changes we are making, we've watched Hannah's mountain range graph settle into a pretty little sine wave, for the most part.

That being said, we have learned that she was in trouble in the night, perhaps for a year or more. While this makes me very sad, I am excited to know we are on it now and the adaptations are effective.

In the week she has used the CGM, she has dropped her average bg by 20 points, putting into the range that will keep her a1C right where she wants it. We are rejoicing over that little victory....in one week's time.

The thing that people who don't dance with T1D every day don't know, is that there is no ' hey, whatever. We'll just wait and see what happens". No, if you are a PWD dealing with type one, especially a woman, particularly a young woman, you have to simultaneously live with hyperawareness of each moment while meticulously planning ten years in the future.

Most teenagers are worried about what they're going to be doing next weekend, or if they are long range planners, where they are going to college and what their major will be...a t1D kid is fretting all of those things as well as preparing physiologically for future babies and jobs with a health insurance plan that will cover the things that are required for them to stay alive. On some days it is a challenge to feel like a seventeen year old instead of a 45 year old.

While a pump is still not on the agenda, the CGM seems to be a welcome addition to the daily arsenal in our war. There is still anxiety over reinsertion here at home....


Let me be real here, for a moment.

This grind is scary. I cheerlead and praise and encourage....

and I cry, and pray and rant, too.

The Dexcom sensor inserter looks like a mini cookie press

When the FedEx guy showed up at our door with a box of these, we put them on the dining room table and looked at them without touching them for a good long while.
Nobody signs up for injecting a 2.5 inch needle into their stomach to thread a plastic catheter in for keeps, and then pull it back out again. Can't even grit your teeth and do it quickly, at least at the onset.

And then, you get to do it all over again next week, same time, same channel.

So. If you think of us come Monday morning, say a prayer for peace, calm nerves and encouragement. Because we are such newbies at this game. We talk a good game, put our game faces on and do what must be done. But when no one else is around??? We are afraid.

Just sayin'.

This is freaking hard. Scary. Overwhelming. Frustrating.

But it is also helpful and will hopefully enable a lifetime full of health and joy and dreams come true.

Dexcom, how do I love Thee? I'm not really sure....

We have arrived at a fork in the road on the T1D journey. Constant Glucose Monitoring. The Dexcom G4 was inserted a mere 48 hours ago and I feel like its diagnosis week, all over again.



Hannah was diagnosed with Type 1 two weeks before her sixteenth birthday, seventeen months ago. I had ignored some pretty big symptoms that I had justified as being attributed to her training for an upcoming Warrior Dash. Her story is remarkable...to me. I expect everyone thinks their own story is remarkable. But suffice it to say we found out she had diabetes when she was admitted to critical care in an advanced stage of diabetic ketoacidosis. Our learning curve was a vertical line. We tackled T1D like bosses and thought we could control it by sheer force of will---hers to force her blood glucose to obey her stringent discipline. Mine to aggressively research and parent and understand. We refused to acknowledge the concept of a "honeymoon stage" and were sure we were straight A T1D patient and mama.




Yeah.


Because when the bottom drops out and you're terrified, sometimes a little control feels like you won't completely lose it.


It has been a pretty good first year and a half, as far as life-altering diagnoses go. She has maintained good control, a pretty solid a1C and a keen understanding of carb counting and insulin dosing. She is unique for a teenager because she adamantly refuses the use of a pump. I get it. I support her. It is her body, her disease, her sanity, her need for autonomy and her choice to give up to six injections a day instead of being constantly tethered to an external insulin pump. The way I see it, is its like choosing between a snake or a porcupine. Neither is something you really want, so if the choice is forced on you, you go with whatever makes you less miserable.



All cynicism aside, Hannah isn't miserable. She is amazing and fierce and strong and brave and is determined to deal with T1D on her own terms. I admire that in her. If she weren't managing this beast, we would talk about a pump. If I thought she'd have significantly better control using a pump, we'd talk. If there comes a time that it seems like the pens aren't working for her, we will revisit the subject. But for now, I get it.



Which brings me to the point of this post. Constant Glucose Monitoring. What a wonderful, terrible thing.



Equivalent to 280 fingerpricks in a 24 hour period, the CGM is giving us a ton of information. For a couple of perfectionistic, obsessive, over-achieving women, that much information is akin to short-circuiting the brain. It is overwhelming to take in the graph of highs and lows as we initially get started using this process.



The rock solid data we were relying on from four to five finger sticks daily was a liar....in some ways. Like only having 5 points on an intricate connect-the-dots design. There were so many missing puzzle pieces.



She has worn the monitor for two days. The insertion was a triumph in and of itself, and probably fodder for another post at some point. The calibration was nerve-wracking, as there was a moment or two of sheer panic after a low seemingly didn't respond. The multiple finger pricks each day that are supposed to be less frequent are actually amplified right now, as we calibrate and double check. There are missing puzzle pieces that will require tweaking for the first time in a long time to try to mitigate some problems in the night.



There is more frustration and fear and overwhelm than victory today. But that is today and tomorrow is another day.


Knowledge is power.



Hopefully the knowledge she gains from the steady stream of information about what is going on in her cells at any given time will empower her to refine her regimen. I'm hoping she gets a silver lining out of this one....like an indicator that frozen yogurt makes her settle in at a golden 115 and never fluctuate, because I think she deserves a win.




Either way, its a new tool in the arsenal for fighting the invisible monster at the door. I'm praying that it allows her more freedom than bondage. That remains to be seen, but for now, I will trust that it will.