THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Monday, May 13, 2013

DBlog Week 2013: Day 1 -- Share and Don't Share

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Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?

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We see Sugar's Pediatric Endocrinologist 4 times a year. For seven years, she's watched my daughter grow up. She knew her when her hair was scrunched up into curls all over her little head...and now...with her hair a tangled mess as she tries to style it herself.

I had a brand new baby, and had just moved across country with my diabetic toddler in tow when we first stepped foot through her door. Eventually, my third baby arrived (and she's had two herself along the way). Sugar transitioned to a pump, started school, and was diagnosed with celiac under her care. She's signed off on packets of camp papers and 504 stuff and insurance stuff. I can't tell you how many times she has put her arms around me when the defeat was suffocating...or how many times she's done the same while savoring victory.

There's not much I can write about here that she doesn't already know. And it's not like I can fake anything with her either. At the end of the day, she will download the numbers and see the averages for herself. She's a smart cookie, and knows how to read between the lines.

If there was one thing I'd want her to see, it's that we're doing the best we can.

Sometimes a rogue high or low blood sugar throws us for a loop, but we've refined our ability to catch those fly balls and keep our head in the game. Sometimes emotions run high...and, lately, there are subtle hints that hormones could be running higher (EEK!). Sometimes it's hard to make sense of anything, and other days everything just falls into place. We've managed to keep Sugar's A1c in a great range, consistently for the past 5-6 years, but it hasn't always been easy -- and puberty has yet to crash our party. The fun has just begun.   

I would hate to ruin her glowing impression of life here, at the old Candy Hearts homestead. So, I won't mention the "HI" BG we saw a few days ago, after a pool party. Or the two juice boxes in the middle of the night that followed. I won't mention the day we forgot all her diabetes supplies when I was rushing to get to a kickboxing class, and then I didn't have anything except a stick of sugar-free gum to offer when she felt low. (Also: Special thanks to the new grad M.D. who did her endocrine rotation with our doctor for sprinting across the street like an Olympic athlete to find us some juice. Pretty sure you saved her life.) It's probably better to forget about what a bowl of cereal is capable of...or the fact that I still offer it for breakfast. And, seriously, I *KNOW* when I'm supposed to check for ketones, but... well...nevermind. 

Hey, sometimes I get it right.  

As Sugar's mom, she's seen me at some pretty low points, but she has always believed in me and my ability to get things back on track.  For that, I just want to thank her from the bottom of my heart.


And, crap.

It's time to change the lancet AGAIN?

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5 comments:

  1. Haha. I make an effort to change my lancet with every endo appointment. That way, at least I change it 3-4 times per year.

    Well written, Wendy. Great post.

    ReplyDelete
  2. As I randomly pick blogs to follow this week out of the many, many options...I'm somehow drawn to yours. I enjoy your sense of humor and realism. I feel I can learn from you as you've been there...with a T1D toddler. Thanks. :)

    ReplyDelete
  3. I think that's the line I've seen the most, today.
    We're doing the best that we can...
    You're an amazing mom!

    ReplyDelete
  4. Why can't pediatric endos grow up to be adult endos?! :D

    ReplyDelete
  5. Oh the cereal - it gets me every time too. I don't eat it often, but I still don't want my endo to see what happens when I do!!

    ReplyDelete

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P.S. (Moderation has been enabled due to mega-spamming sugar cubes.)

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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.