Rules? What Rules ...?

Following the “rules” of Type 1 Diabetes management sometimes means absolutely NOTHING..

We can do everything right and do the same thing day after day after day and get different results.

image found on Pinterest

Yesterday I blogged about Eden needing to stop, think and act in relation to her D care and the struggles we are currently facing with this stupid disease now Eden is in Middle School. (read here)

Eden did EVERYTHING right yesterday..

but D doesn’t care..

She followed our plan even though she really didn’t want to - because it took extra time

First period of the day for Eden is PE - we planned it this way so that she will still have her breakfast in her system whilst exercising thus minimizing the risk of a low blood sugar episode.

9.08 am - Eden tested her blood sugar after PE and it was 93 ..

she texted me and then CALLED ME (yay) and told me she ate 4 fruit pieces (approx 12 carbs)

which was the PERFECT thing to do to get her all the way to lunch

1pm - another PHONE CALL instead of a text..

this time blood sugar was 404 ?!?! HUH, WHAT ?!

please wash hands and re-test - surely that can't be right...

re-test - same result

You only ate 4 fruit pieces, right?


DANG IT - makes absolutely NO SENSE.. Eden did everything "right"

She corrects her high blood sugar and doses insulin for her lunch.. Ordinarily we would want to wait an hour to be sure her blood sugar was dropping before eating.. that was not going to happen - she was at school and I was not going to have her go without lunch!

instruct Eden to test for ketones .. (learn more here) that means she has to leave her friends and go to the school office. She only carries her blood sugar meter and extra snacks/sugar with her on campus during the day.

another PHONE CALL - she tried testing for ketones and can’t get the meter to work?!?! It took her blood - TWICE - but then just started flashing and she was unable to get the results..


now we have an unexplained VERY HIGH

blood sugar reading

- and no idea if her body is spilling ketones

- which is dangerous..

Me - well of course I sound stressed on the phone.

She assures me she is fine and not to worry and she hangs up. In a hurry of course to get back to her friends...

I’m left frustrated, confused, worried and exasperated...

What makes the most sense is that her pump site went bad - meaning that I technically should have gone to the school and change it. BUT she had already dosed and I would be picking her up in just over an hour anyway - she was skipping Cross Country practice to get her hand re-casted (Oh, by the way - her thumb injury was INDEED a thumb fracture!!!) :(

SO - I crossed my fingers and hoped for the best

2 hours later - sitting in the parking lot of the Ortho office - Eden’s blood sugar was still in the high 300’s.. :(

Site change here we come - D can’t wait and doesn’t care that we have an appointment to get to..

Type 1 Diabetes can be an incredibly frustrating

and maddening disease..

I like to know a REASON why things happen..

sometimes (well most times)

we just don’t get one..

In this case we ASSUME her site went bad - but Eden was still battling high blood sugars well into the evening..

even WITH a new site - only finally coming down into the 170’s at 3.30am this morning..

and then the fun starts all over again today..

T1D is mentally and physically exhausting to deal with

Blood glucose management is a dynamic game. Just when you think you're in a good solid groove, things change. I used to just throw up my hands and write it off to the vagaries of diabetes. But I've found I can draw a good conclusion on most of my aberrant BGs, but not all.

Are you familiar with the We Are Not Waiting community and the Nightscout project? Some parents are receiving up to the minute remote BG results on their cell phone or Pebble wristwatch. Wouldn't it be great to see Eden's glucose status when she's at school?

I've never been the parent of a T1D and I can only imagine the demands of the routine you'd have to conform to.

Well-written/laid-out blog entry with a great graphic. Well done!

Forgot to add the link:

thank you Terry .. yes - I am very familiar with the CGM in the Cloud... we would very much like to get Eden on a CGM but at this point she is not ready for another medical device to me attached to her.. :( It would be wonderful for all of us, but it is her body and we have to respect her decision.. even though we are working to sway it