Why So Needy?

Why so needy, Diabetes??

#kiddingnotkidding  I had had enough by 11:00 this morning. The chaos of buzzing and beeping had gotten on my last nerve. I have to wonder how often the noise from our devices is the last straw on our way to burnout.

  • The Bear’s Dexcom CGM was alarming pretty regularly all morning: UNDER 55! (despite the meter test at 90), UNDER 55! (oh wait, this time, it really is), RISING!, FALLING!, RISING AGAIN!
  • My own Dexcom CGM was alarming UNDER 55! UNDER 55! regardless of what I ate.
  • Anywhere from 3 seconds to 15 seconds after the Bear’s CGM receiver yelled at me, first the BHE’s phone and then my phone would echo it as loudly as possible. Never at the same time, but in sequence. And if you don’t pick up the phone and acknowledge that yes, you heard its obnoxious noise, it will continue to remind you at regular intervals.
  • Along with the alarms, the Bear’s CGM was vibrating angrily against the wooden table where it was resting & recharging — sounding like someone drilling into the side of your head.
  • Since I had to remove my pod mid-day 3 days ago for a MRI, it started “reminding” me that my pod was going to expire, going to expire!, has EXPIRED!, is still EXPIRED!!, REALLY EXPIRED!!!  Even though you then have 8 hours before you absolutely must change out the pod, it will remind you every 30 minutes or so.

Maybe because this was all going on since about 7 this morning (when my CGM insisted that I was high and my sleepy brain didn’t do anything but hit the button and go back to sleep) after a week + of nighttime basal testing for the Bear, changes to her settings from our recent appointment with the CDE (to work on some high patterns) only to have a week of lows at another time (which should have been impacted in no way by the changes we made), unexplained overnight high readings for me, extra site changes since both dexcom & omnipod had to come off for that MRI (take a breath)

Maybe because of all of that, the alarms today just seemed like too much. Why does Diabetes need my attention every second today? Doesn’t it get that the more it yells and alarms the more I want to ignore it? We’re like Lois & Stewie sometimes…

Is it a codependent relationship? I don’t know… definitely feels dysfunctional at the moment though.

A woman I know whose granddaughter was diagnosed T1 around the holidays was recently telling me about a day her granddaughter spent at her house. She’s one of those awesome grandmas who has been right there every minute, learning as much as she can about how to take care of her granddaughter and yet tries to keep everything as “normal” as she can. She was telling me about what a tough day it had been in terms of blood sugars – first low then high and no matter how carefully they did anything (insulin dosing, treating with carbs) it just never stabilized. She could tell her granddaughter was really not feeling up to par by the end of the day – tired, and just kind of run down. She asked me, “how long before this kind of thing settles down?” It breaks my heart to have to tell someone that it probably won’t ever “settle down” in any kind of sustainable way. Sure, there are days, even weeks, when you are in such a great zone and those blood sugars don’t really go on any excursions. But, just as you are breathing a sigh of relief, something you can’t even measure or know about changes and you’ll have a few hours, or a day, or a week of struggling. It’s no one’s fault and it’s unpredictable. I know she just wants to hope for a time when her dear granddaughter won’t have to feel wrung out after a crazy blood sugar day; a time when it all won’t seem so hard and be so d*mn frustrating. It’s hard to tell someone that I’ve given up hoping for that.

I still hope that there will be a cure someday, that the Bear will know a day when she doesn’t have to think about insulin, blood sugar, carbohydrates, hormones, illness, exercise, sleep, every-little-thing not through technology, but because somehow, diabetes is gone from her body. I still hope for continued improvements in technology, knowledge, treatment like the ones that have already helped me and our daughter live healthier, marginally easier, lives with Diabetes – and we will continue to participate in appropriate trials and take advantage of anything that comes along that can help us manage.

But, it’s harder to have hope some days than others. And it’s hard to hear the voice of hope amidst all of these alarms. Really, Diabetes?

 

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One Response to Why So Needy?

  1. Rick Phillips says:

    I long ago gave up believing that there would ever be a cure for me. But I will never give up my hope that my grandchildren will never have to deal with this disease. I am sorry your daughter has to deal with this. I am convinced we are close. So if not a cure (whatever that is), maybe we can hope that this will be the worst she ever has to deal with. I believe we are that close. I hope you and she do as well.

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