Tuesday, December 20, 2011

A1C Update On A Tight Rope


I know, I know, I promised to be happy if Cara's A1C was under 10 BUT really...REALLY... 9.9 ARE YOU KIDDING ME?!?! (go ahead you can laugh, it is kinda funny I guess...9.9) How does that even happen.  I guess I can be happy we are finally out of the 10's. ha...ha...ha (that is me laughing at my 9.9 ha)

The A1c was from a finger pick so I'm taking off a few points because I feel that a blood draw A1c is much more accurate.  So lets say 9.5 :)  That's a little better.

Whatever the number this is not GOOD enough...UGH!

So back to the drawing board and time to change it up a bit.  I need to change my mind set.  I will admit I have a fear and it is of LOWS.

This is a hard job, too much insulin and your crashing and chasing lows, too little insulin and your child has high blood sugar and high A1c's, each has its own negative and crappy side affects.

This is not as easy as it seems.  "Oh (they say) just count the carbs and bolus for them"...easy peasy right?.. "it's just a balancing act between carbs, insulin and exercise" (this is what they told me) REALLY? IS THAT IT? WHATEVER! How am I suppose to accurately balance something I can't see?  How in the hell are you ALL doing this? 

Imagine walking on a tight rope 25 feet in the air or better yet imagine placing your child on that tight rope and trying to help them navigate the tight rope...with your eyes closed...NOT FUN and GOOD LUCK because you or your child are going to fall.  It takes time, it takes knowledge, it takes patience AND maybe a little luck.  But you MUST walk this tight rope, as you make your way back up on that rope your getting stronger, your getting smarter, your confidence is growing.  Just then, some jack ass thought it would be FUN to manipulated your rope and everything has changed.  Now your rope is longer, it is thinner and it is angled!!  You will need to make adjustments, you will need to make last second decisions but as long as you don't give up one day you will get there.

One day I will get there...One day!  So new plan, we plan to be a little more aggressive, not too sure at this moment what that means or what that will bring but I must get this A1c down. We are also going to start saving for a CGM.  Image walking this tight rope with your eyes wide open now you can see when the twist and turns from that jack ass are coming.  That is what a CGM (continuous glucose monitor) will do for us and Cara it will open our eyes to what is happening with her blood sugars as it happens.  I truly believe this is how we make a huge change in Cara's A1C, this is the way I can get over my fear of lows and feel more confident being more aggressive. 

Do you think Cara would be sad if Santa brought her a CGM as her one and only gift? (that damn thing is expensive)  Ya, I don't think she would like that too much!!   

10 comments:

Roselady said...

The CGM would help so much -- at least I think. It's the only way I feel safe keeping my son on the low side. I would never risk it otherwise. Hope St. Nicholas delivers a good chunk of $ this Christmas. Good luck.

Denise aka 'Mom of Bean' said...

Just another example of the ridiculously wicked sense of humor this disease has...9.9, ugh!
It is way 'easier' to be aggressive with a CGM, at least it is for us. Unfortunately, Bean has a tendency to just push the button when hers alerts her to a below 80 and won't test until she feels low and is in the 60s or lower. We're working on that, but it's just one of those things with her.
Oh, and the god awful food/insulin/exercise balance is a bunch of shit in my opinion!!

Kylie M-W said...

Just so you know, Medtronic has a new CGM out in Europe that should be coming to Canada soon (sometime in the New Year is what I have heard. It looks fantastic (it is smaller and goes in at 90 degrees instead of at an angle), and the inserter looks so much better!

9.9 is still a better A1C... you will get there!

-Kylie

Leighann said...

I know it's hard, but an improvement is an improvement.

We're struggling with A1c's too. And we are also being more aggressive, especially at night which makes me nervous.

We are not thinking about a CGM until there is integration with her pump, but I know lots of people find it to be a useful tool.

Hugs!
-Leighann

Sarah said...

celebrate each moment, each small victory...eventually it will be a mountain of amazing moments to claim victory over!
A CGM is nice, but for us, it is not as great as other tips I've learned from veterans on CWD. Have you ever posted numbers on there? I truly think their help beyond the CDE and Docs have been much more valuable!
Enjoy the last few days before Christmas :)

Alexis Nicole said...

I needed to sneak away and come check on you. 9.9, agreed D plays some jokes doesn't it...

I admire your honesty, strength, and courage Nicole seriously. Cara will be stronger because of it!

Have you tried Apidra? I truly believe this insulin in is amazing, also reading Think Like a. Pancreas helped so much, and yes....a cgm.

It IS an improvement though, do forget that! Xoxooxox

Scully said...

Hey Nicole!
I recommend contacting your Medtronic rep directly and asking about deals. When I got my CGM they were offering a transmitter and 8 sensors for $399! the transmitter alone is $700 and sensors.. well you can't get 'em cheaper than %50/ea.
That's the only reason I picked up a CGM. Gotta love this bullshit Canada eh? I'm pretty sure Dexcom isn't even available up here.

Nikki of Our Diabetic Warrior said...

Hi Nicole,
Have you ever tried feeding her the same foods with the same known carb count for a couple of days and see what happens? For Andrew, we give 30g total carbs with each meal, never more than that.

This way, you would have back up proof (food journal with blood glucose numbers) for the doctors that you are trying everything possible.

It's easy for them to say it's just nutrition and exercise, but when you're in it 24/7, it's not always that easy.

Jess said...

it took me an entire year to see my a1c drop from 8.0 to 7.1. lots of frustrating 0.1 drops in there. and i have a cgm!

but what people kept telling me was a drop is a drop, even if it is only 0.1%. and the fact that it hasn't gone up is a victory in and of itself, even if it doesn't feel like it.

one day at a time. you can do this!

Jules said...

I understand what you are saying. Weve had a1cs all over the place, got it down to 7.8 and its been up to 9.8. Last a1c I had worked and worked at diabetes and it was 9.1 and I was DIRTY upset. I told the endo that I felt crap abt it and he said it was where he would expect to see it, but had to point to the chart and tell me 7.5% is the ideal. he also said he didnt think if he took my son home that he could do any better. it was a small comfort that he acknowledged how HARD this is. he said it might get easier around age 6 or 7. lol. we dont have a pump or cgm. i think the hard part for us is, our goal is keep him at 10mmol/l at nap and sleep. Im thinking we are screwed just by this fact as my son sleeps 12 hours at night and 2 hours through the day so 14 our of 24 hours to start off with are 'out of range'.... go figure.
BIG HUGS and know I get it xx.