THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Tuesday, November 30, 2010

Warning: Freak Out Ahead

Well, Friends.  It looks like we made it.  Thanks for supporting me during NaBloPoMo November 2010!   I've met some new pals, read some awesome blogs, and found myself looking forward to our daily rendezvous here at Candy Hearts.  I have to admit that half the time I sat down to write my daily post, **I** really had no idea what we'd end up with.  It was like a new surprise every day!

And so here we are.

Day 30.

Cue Christmas music....the holidays have officially begun! Thanksgiving was splendid. Decorations are up.  Children are singing.  Everyday the backpacks are filled with another cute little art project.

Smile.

Ahhhhhh...I'd like to stay there.

In that nice happy place.

But........

WARNING:  FREAK OUT AHEAD!

Today's post has been looming in the pit of my stomach for weeks.

By the time you're reading this, I'll be in a deep meditative state chanting to the A1c Powers That Be.

You see, I've had anxt about our endo visits in the past, but I could generally tell how things were going by keeping tabs on Sugar's 90 day overall average.  Usually her average and A1c seems to measure up pretty well with the chart in this article.  So, basically, for awhile I've been feeling somewhat prepared going into our appointments.  It helps that she's been between 6.8 - 7.3 consistently for the past 2+ years...that's a confidence booster, ya know?

Except...........

We aren't talking about THOSE appointments.

We're talking about TODAY's appointmenT.

Oh dear.

We've had 400 and 500's tossed into the mix for months.  Totally random.  Just thrown in there every now and then to see what we'd do, I guess.

Smooth sailing ------------aaaannnndddd BOOM!!!!!!!!!  Not smooth.

I **HATE** troubleshooting highs.

Do we need a new vial of insulin?  Is it the site?  Air bubble?  Is the tubing kinked?  Did I miscount her carbs?  Did I forget to bolus?  Did we miss a low and now she's had a rebound?  Is she getting sick?  Is she growing?  Do I need to adjust basals?  Ratios?  Correction factors????

HUH???  HUH????  SOMEONE TELL ME WHERE THE HE.........CKah (Hi Reyna!) THESE CRAZY NUMBERS ARE COMING FROM!!

And...then there was the remote thing.  Nothing "HAPPENED" to it per se, but it seemed like it was starting to have some trouble connecting with the pump.  I mean it worked, and all, but...who needs to wait longer for the pump and the remote to communicate??  So I called Animas.  They sent a new one ASAP.  Easy peasy.

Sooooo....what was that 90 day average again?

I DO NOT KNOW, PEOPLE!!!!  Why are you asking me these things?!?!  I have no idea how long we've actually had the new remote, so I don't have a freaking CLUE what her 90 day average is at this minute!  I DO know, however, that whatever history is in her new remote says 180.

Come again?

YES!  IT FREAKING SAYS 1-8-0!!!!!!!!!!!!!!!!!
(Which, I would have been THRILLED with a few years ago.  When Sugar - dx age 24 months - was younger, her target was 7.8 - 8.5.  Her endo -- whom we trust immensely -- discussed the rapid brain growth that occurs until sometime around age 6, and relayed concerns about the unknown long term effects of low blood sugar during that phase of development.  Sugar has a history of HORRIBLE low blood sugars -- passing out, combative, confused, hours of recovery....HORRIBLE HORRIBLE HORRIBLE!!!  Together we felt comfortable with this target range, and she worked closely with us as we slowly moved into the 7's with minimal - known - low blood sugars.  After achieving an A1c in the 7's a few months before Sugar's 5th birthday, we haven't gone back to the 8's.   Friends, we've been at this for more than 5 years...without a CGM.  For 3 years, we've been creeping FORWARD -- or, at the very least, STEADY -- we have NOT moved BACKWARDS...UNTIL NOW!!!!  OMGsh....Is it hot in here?  I'm feeling slightly lightheaded. )

She hasn't had an average that high for A. LONG. TIME.

It's so much pressure, PEOPLE!!!!  For YEARS the 7's eluded me.  Y-E-A-R-S!!!!!  Once we finally made it to 7's-ville, the pressure was on to STAY there.

I. CAN'T. HANDLE. THE. PRESSURE!!!!!!

Over the past few years, I've had to make some trades for those A1c's and averages:

I've traded sleep.
I've gained 40 pounds.
I've screamed at people I care about.
I've lost my sense of organization.
I've forgotten how to make some of my family's favorite meals.
I've lost my train of thought so many times, I'm pretty sure people might think dementia is setting in.
I've forgotten things at work.
I've made silly mistakes in life...like putting my CELL PHONE IN THE DISHWASHER and washing it!

I've seen a direct correlation between the downfall of **ME** and the stability of her A1c's.

I'm not blaming her.  I'm blaming this blasted DISEASE!

So....a few months ago....

I started making it a higher priority to get to the gym everyday.
I started checking less at night (1-2 times instead of 2-3 times) in an effort to preserve sleep.
I started focusing more on the healthy relationships in my life.
I started taking a weekly class at church that I've been interested in for awhile.
I EVEN WENT AWAY WITH MY HUSBAND ALONE FOR THE FIRST TIME!!!!!!

AND NOW LOOK WHAT HAS HAPPENED?????


180?????!!!!!!?????!!!!!

So what's a mom to do?


(I mean, besides, mediate and chant.)

Well, DUH!

Bake (gluten-free) cookies, of course!


I mean, seriously, who can crush a mother's heart when she's bringing cookies to the dreaded appointment???  At the very least, they should be able to let me down easy, don'tchya think?

And so that's that.

It's all out there now.  

It's not like I could have figured out a way to FAKE IT.  

It is what it is.

And now I have to figure out how to get both of us back on track.

It helps that I have this little package of joy to remind me of my blessings when I'm feeling down...



Hey.

Life is good.

This life of raising a child with diabetes is full of ups and downs.

We'll figure it out.

I hope.

Click HERE to see how the story ends...
PS!!!!  Speaking of cookies....

I entered the BLUE CIRCLE COOKIES I made for WDD and a guest post into a contest on Facebook. It's the same sugar cut out recipe as the one I used to make today's cookies.  As of right now, the BLUE CIRCLES ARE WINNING!!!!  But our luck could change any minute.  If you'd like to support the WDD cookies, please "LIKE" the Gluten-Free Cookie Swap and then "LIKE" my cookie recipe!

Besides....I need the extra TLC today.

Thanks :)
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20 comments:

  1. All will be well, freakout be damned - you make beautiful cookies!!!!

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  2. 180 is not that bad of an average for a little girl, Wendy! Growing up, my A1Cs were usually in the 9-10 range, if not worse. I still turned out okay! Don't give up on that time for yourself at the gym. You'll find the right balance and Sugar will be all the better for seeing her mommy take care of her health too!

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  3. YOU DID IT!! you made it through NaBloPoMo and with some wonderful cookies :) p.s. I do love that you have taken sometime for yourself, we all need it!! Your a rockstar and you are loved and life is good!!

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  4. Silly Wendy, I bet you will be SURPRISED by a much better A1c than you think! ((Hugs))

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  5. Good luck today. All will be well. You don't get consistent numbers like that for years, or a TG as wonderful as you did by accident. We had a night last night that put things in perspective for me - non-correcting 300s that - duh - related to a kink. I had been attributing it to the basal increases (which I'm sure didn't help) that Caleb seems to be going through. Anyhoo...my point being, those times are so rare and mean very little to the A1C or more importantly, the overall care of Caleb or Sugar. Whatever the number, it doesn't matter because you've done the best you can given the crude tools we have. You're not a novice, you know what you're doing. It is what it is. And I bet it will be great.

    I completely understand the not knowing though bc of the remote history not being there. It seems whenever we start a new PDM, it's on a high day and that average is stinky and angst-ridden until we get more history in there.

    Okay - I'm rambling - cutting myself off - good luck again!

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  6. MUAH!!!

    Sending you much love...to stifle the "FREAK OUT" girl! I totally understand and I am with Lorraine. You have DONE EVERYTHING in your power to attempt to manage Sugar's BGs. You know what you are doing; you are no novice; you are one of the BEST. No matter the number...you ROCK.

    You DID IT!!! Another NaBloPoMo!!! WOOT. I am truly inspired by all of you who completed this task during a very busy month. Your dedication inspires me to do better. Thank you for that.

    AND...LOVE the pic in the mixing bowl!

    AND...THanks for reminding us all to take good care of ourselves...it is easy to get lost in the numbers.

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  7. There has to be some sort of balance between your own health and your daughter's. We all need to find that happy medium.
    and those cookies are making me CRAAAZZZY!!!! please.. what is the recipe? is it one you already posted?

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  8. First of all... Wahoo! We made it through 30 days of NaBloPoMo!

    I could have written that list of things you've done (weight gain, yelling at loved ones, etc.). If it helps, we're right here in the trenches with you.

    Our endo appt is in 2 weeks. We had such a big drop last time that I am afraid to see what this one is. Did we maintain? Lower? Hopefully not raised it up again. Ugh!

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  9. Thinking good A1C thoughts for you today... our appt is in a few weeks and I'm spending a lot of time and energy NOT thinking about it. Sigh.

    So glad you have gotten to do some things to take care of yourself. And I hope you win the WDD thingy! I'm not on facebook, but would totally "like: your cookies if I could.

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  10. I love your blog posts Wendy. It's so nice to know I'm not alone in sacrificing everything for our child's health... praying that the A1C news isn't as bad as you are expecting. Hugs.
    Michaela

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  11. I bet it won't be as bad as you are expecting. And even if it is, it is just ONE A1C. It WILL be ok!

    Breathe...Breathe...Breathe...

    And eat a cookie for me. :)

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  12. Ahhh! We go to endo tomorrow!! I'm freakin out with ya! I lauged a couple of times while I was reading this because I can so relate! The..."I'm not what I used to be" rings so true for me. I like the way you put it...trade it all for a good A1C. I also hate troubleshooting highs..all the questions going through my mind - and what I hate even more is when someone else will ask me...WHY is she so high? IF I knew that answer I'd be golden!!! Big hugs...hoping for a good number for you today :) Either way, know that you ROCK!

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  13. Ahh, good luck! I am freaking out too. Our endo visit yesterday was not that great, we are barely 1 year in, A1C 8.5 up from 8.2 3 months ago. I am afraid of the lows, it's me that keeps her numbers up! DR says 8.5 is okay but we need to start coming down. Okay, so I'm ready to bring them down and she wakes up 195 this morning, even after DR upped her basal's yesterday! Geez! Can't this stupid disease take a vacation just for the holidays! Good luck, sending love and good thoughts your way!

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  14. 7's.....A1C's have 7's ?!????? Oh, stop it, my sides hurt!!!!

    Our Endo is Dec.9th.....probably gonna see 8's again (that's the only number...right?) And we'll go with some nice bruises too......grrrr.

    LOVE the picture of the funny face in the mixing bowl! Moments like those kinda melt everything into the land of aaahhhhhh......

    Cute cookies. Is bribery legal?! Hope your appointment goes well. :)

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  15. Our Endo appointment is next week. Scared. I'm sure the number went up but what can you do. (just freak out about it is all!)

    The mixing bowl picture is priceless! :)

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  16. I know that it's not easy and lord knows that I also often struggle with it as well, but don't define yourself with an A1C number! It is just that, a number. You're doing an amazing job Wendy !!

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  17. Whatever the number is, just keep moving forward, doing the very best you can. It's not a report card.

    You're an amazing mother. Don't forget that.

    And cookies, well, cookies make everything better. :)

    LOVE the pics of Tink. SO cute! :)

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  18. Well if I have to find a plus side in not having insurance - we are not able to take Nate for his December Endo appt - - - and I think I'm ok with it. He's been high for days - site change, new insulin,basal increases, I:C increases - you name it we've tried it. UGH!!!!

    The good news is I already had the pleasure of seeing Sugar's amazing a1c on FB! Congrats - you rocked it!

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  19. Ok, I am just seeing this post...and then popped over to facebook to see what the word was...and it looks like...

    AWESOMENESS!! All the worry! And all is well!! See...it IS okay to take care of yourself! Woo Hoo!

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  20. Wendy, I love you! Let's be friends forever!

    *I to have gained weight....35 pounds.
    *Lost sleep...and I'm one of those who really needs it!
    *Lost my organization.....and it's driving me crazy....

    But like you, I'm trying to get some of it back. Gym.....sleep....uh, I did clean a little this morning.

    Anyway, you make me feel like I'm not alone and I love you for that!!! : )

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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.