Wednesday, August 29, 2012

Day 3 of 3 and No Words

Today is day 3 of watching Maddi's numbers closely, the day I would be making adjustments *IF* she were still running crazy high. But she isnt. -SIGH-

Today is a different day, not the same as the pattern I've seen over the last 2 days. Well, actually its been about a week since numbers have been behaving...but like always, throw in a decent day here and there and you cant really follow the 3 day "time to make changes" rule now can you?

Maddi called me from school this morning just 2 hours after breakfast. 1.65units still working with a 94 blood sugar. She said she is sure she is dropping fast. UGH. As much as I REALLY wanted to tell her to take just 8c of quick sugar, I also had a nagging image in my mind of her going VERY low like she said she feels is about to happen. So, I had her double it up to 16c and asked her to recheck in 15. I never heard back from her.

I did ask her to call me back with her new number, but, she is at school. She is busy. She is between classes....I know she will do what she's gotta do based on the next finger poke....but my brain just doesnt stop the what if's.

What if she dropped REALLY low and hasnt called me back because the Nurse is dealing with Glucagon and calling the Paramedics?

What if she went back to class without re-checking? What if she sits pale, quiet and unable to help herself get more sugar without anyone noticing?

What if she is wandering around campus confused?

What if she only needed to "bump up" her number with 8c and now she is sitting too high until lunch? I'll be SO pissed if I made the wrong decision!

Day 3, the day I was sure I'd be increasing insulin across the board. Today is the same as yesterday. Same breakfast. Same activity level...but Diabetes doesnt care.
For whatever reason, today is different than the last 3 days. This is exactly why sometimes it takes SO LONG to get numbers "under control."

Damn Diabetes. Frustrated. Irritated....TIRED. Constant. Constant. Constant.

On another note, we moved last week! Packing, lifting, unpacking, cleaning, cleaning, and MORE cleaning! Zooming around non-stop in the AZ heat....I dont think I saw a blood sugar over 90 for an entire week!! 30's, 40's and 50's were haunting me, even despite my reduced basal rate, no bolus for food consumed and drinking G2 continually. My whole body still aches!! Some nights I was afraid to go to sleep because I feared not waking up. Even worse, I missed several of Maddison's night checks out of shear exhaustion and not hearing my alarm. As I rushed into Maddison's room those mornings, I was pleading in my mind "please be ok" over and over as my heart pounded in fear of finding her low, sick from being in DKA, or finding her dead in bed.

No words can really describe how you feel in those moments as you rush into your childs room knowing you missed a blood sugar check!!

FINDING her SAFE and ALIVE is all that mattered. I would spend the day SO angry at myself for missing her night check, yet so grateful she was ok.

Day 3 of 3 today, not sure what tomorrow brings. And then, the Blue Candles appear on Facebook this morning. Blue candles represent a life taken too soon from Diabetes.

This time, a seven year old boy who has been living with Diabetes since the age of 2. My heart aches for this family. Tears fill my eyes, a lump in my throat, and again, my heart is pounding. There are just no words.

This could have been us. This could BE us.

There are just no words.

Only silence....



Tuesday, August 14, 2012

Alone

Maddison started 6th grade yesterday, which at our school means she now has a home room and 3 different teachers. YIKES. Big responsiblity, alot of change, and with this also comes my decision to FINALLY have Maddison managing her Diabetes within the classroom. No more going to the school Nurse, unless troubleshooting is needed.

My heart is suddenly very, very sad.

Sad that Maddison has the extra responsibilty of such a major disease, especially now when so many added responsibilities are emerging.

12 is such a hard age. Socially, emotionally....and then there is Diabetes.

I'm sad that Maddison may feel "different" while surrounded by the watchful eyes of her peers with every finger poke and BEEP from the meter or insulin pump within the classroom.

Sad that the time has come to turn Diabetes over to her, leaving her "alone" with this stupid disease.

Long overdue? Perhaps. Its so hard to let go, especially letting go of Diabetes.

Letting go all depends on the child, and Mom knowing when the time is right. Diabetes is something that you never want to hand over, while at the same time preparing for it has been in the works for years. Suddenly one day you realize its time to step back, and all you are left with is hope that Diabetes will be tended to the way it was within your own care. Its an overwhelming responsibility sometimes.

This is a huge milestone. This is very different from all the years Maddison has been managing her Diabetes under a watchful eye. This is Maddison OWNING it ALL DAY LONG. Owning it.

My heart feels alone FOR her.

Its time for my little birdie to fly. Bittersweet, and heart breaking all at the same time.

Tuesday, August 7, 2012

Avoiding

I have purposely been avoiding the Endocrinologist. For Maddison its been nearly 6 months since her last appointment, and I havent had one for almost a year!! There, I said it!! Now I feel less guilty for some reason :)

Why on earth would I avoid our FABULOUS Endo? Well, because hearing our A1c does nothing but make me question my efforts and abilities to tame this beast. Im never "happy" with the number. (even when my own A1c was 6.5% for over 2 years I still wanted it back down to 6.2%!!!) I always think that our A1c's are either too high, or too low....so, for now Im deciding to schedule appointments less often. Im stepping back from the "report card" because I honestly don't need (another) number making me feel like Im never good enough. (Im already hard enough on myself!!) For now Im choosing to let Diabetes be a more of a "nothing" in our life, instead of an "everything." Im choosing to stop worrying about that ONE number, and will instead keep focus on ALL the numbers and what I need to adjust to fix them. Does this even make sense?

Did Maddison's last A1c reflect that my efforts in managing Diabetes had been lacking? No, not at all. Maddi's A1c was simply a reflection of insulin needs increasing all over the place, and me not being able to keep up, while also trying to keep her safe from lows. I know that in my mind, but somehow that stupid A1c makes us crazy anyway.

I should mention that Maddison's last A1c was her highest EVER (still in the "recommended" range) so perhaps that has alot to do with my mindset of avoiding appointments for my mental health.....but you see, the problem with an A1c is that it doesnt necessarily reflect effort or knowledge. Seeing an A1c result also isn't going to change ANYTHING I'm doing, because Im constantly TRYING to micromanage numbers anyway. It seems by the time we are in for the appointment Ive already made the "suggested" insulin dose changes anyway, so I end up being irritated that they "suggest" anything because at that point Im just waiting to see results!

Truth is, an A1c is only going to make me FEEL like a failure. I dont need to feel that way and I dont need to hear the A1c result to know what needs to be done. I can see it in the numbers every single day! Sometimes I think this whole micro-managing thing is just too much, in SO many different ways.

Maddison may have recently had her highest A1c's ever, but I still logged EVERYTHING daily. I still woke up chasing numbers every 1-3 hours overnight most nights, and we still checked blood sugars every 2-3 hours during the day. I still made changes to insulin dosing as often as I safely could, yet she still had the highest numbers EVER. What more could I have done? That stupid A1c hurt my heart.

Because it wasnt reflective of how I THOUGHT we were doing.

Because it wasnt reflective of the overwhelming amount of time I spent looking over logs and making changes.

Because it wasnt reflective of anything I wasn't already adjusting every chance I could!!

So, Im stepping back. Do you REALLY need an Endo appt every 3 months? Do you REALLY need an A1c drawn that often? What does that result change if your efforts and knowledge arent changing? Exactly.... NOTHING. For me it changes nothing but how I feel about myself and this disease. Im avoiding the A1c's for awhile from here on out, but dont let that confuse you, Im still putting every same bit of effort into managing this damned disease!

My A1c? Well, thats another story. Ive been lazy with my carb counting that used to be "perfected" with each morsel consumed, and Ive been lazy with eating too much crap. Ive been lazy without workouts (does walking the dogs count?) and Ive been lazy without making basal changes where Im pretty sure they should be made. Why? Because sometimes we get lazy, and sometimes doing "good enough" is all that you have to give. -Sigh-

Two higher A1c's than I want, both for very different reasons. Over the years Ive learned its not as much about the number, as it is about your honest effort and mental health. So for now, Im avoiding that silly A1c check for both of us, because to me, it really is more harm than good!