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Wednesday, April 16, 2014

The Ugly Underneath

A few weekends ago, Fred took Elise to her very first Daddy/Daughter prom. She was so excited for the event; a pretty party dress, shoes with a hint of a heel (her first!), body spray with sparkles, and some eye glitter and lip gloss. She didn't want to look in the mirror until she was all done up. The results had her uttering a hushed, "oooohhhhhhhhh!" As she twirled and curtsied in front on the full length mirror.

(For the record, she must get it from Fred... I have never twirled or curtsied in my life and the thought of putting on a dress at her age would have made me run, screaming.)

There was a small party at a neighbour's house before all the dads and daughters left.  There were appetizers, the girls admired one another, and we took pictures.  Like the one above.

To the casual observer, the little girl does not appear to be enjoying herself very much. She looks like she doesn't even want to be there. And that's because they are missing the ugly underneath.

The ugliness of a blood sugar that was 356.

And a CGM that had been reading HIGH most of the afternoon.

The awfulenss that was all the other little girls drinking sparkling grape juice in fancy cups, while I only let Elise have a tiny sip, just to try.

And even though I encouraged her to have a chocolate covered strawberry (high BG be damned), she didn't want to because she knew she was high and didn't want to go higher.

The ugly underneath of diabetes is not only how it can damage physically, but also so heart-breakingly emotionally too.  After awhile, you kind of grow hardened to the BG checks and pump changes... it's all a part of a routine, like brushing your teeth. 

But what you never get accustomed to is how this disease pierces your heart when it wrecks havoc on the emotions, and you're the only one who sees the tiny tears slip down your child's face as she tries to sit unnoticed in a corner. It just about breaks me.

But at the end of the night, while her CGM from that evening looked like the world's most vomit-inducing roller-coaster, she still declared the night, "pretty much the best time ever in my life."

Because the beautiful underneath that people also miss is just how strong and incredible these kids are.

Thursday, April 10, 2014

A walk back in time

This is Lucas and I out for a walk.  We take a lot of walks together in the mornings when the other two are in school.  And it always brings back memories of when Elise and I would take similar strolls through the hood; just the two of us.  Siblings had not yet entered the picture.

Elise at 14 months

One day as we had rounded a corner, we happened upon a fire truck.  Elise was probably only 14 months and had only been diagnosed two months previous.  I thought she would love to look at the shiny truck and see the firemen (it wasn't an emergency, a fire captain used to live in our neighbourhood).  

She was taking it all in when a funny look came over her face.  All the blood drained out and she started to scream.  That bone-chilling cry that only the Mom of a T1 baby knows.  And my heart almost stopped because I realized I had left all of her stuff at home.

I scooped all 18 pounds of her up and sprinted to my house.... about 20 houses away. I quickly checked her and a 52 popped up (funny how after 5 years I can still remember these details). 

I never forgot her bag on our walks after that (funny how I didn't even think about the firemen).

These days, our walks are a whole lot lighter.  Even now, I still have moments of panic when I realize I'm not carrying a meter. Even though I don't have to.

Taking a stroll with my little man
No matter what, diabetes is always there.

Tuesday, April 8, 2014

Things Diabetes taught me this month... March edition

-There is some sort of weird vortex at the soccer field Elise practices at.  How else can you explain 2 (maybe 3... I've lost track), pod failures there? They just start emitting the screech of death for some reason.  Strange stuff.

-Fred and I suck at remembering to bring insulin with us.  You know, the stuff Elise needs to keep her alive?  We're never usually more than about 10-15 minutes from home, so I just don't think about it.  I think it's because Texas is so hot for most of the year, I don't want the insulin to spoil.  And I HATE lugging around a cooler or anything more than I have to (a diabetes bag, diaper bag and sack full of snacks for two growing and ALWAYS hungry boys is enough, thankyouverymuch). If we're going to be far away or gone for a longer period of time, of course I remember.  I just need to work on those short trips.  Because that is always when we have an issue (see paragraph above).

-As a D-parent, sleep is coveted, but most nights elusive.  I discovered that even my kids can tell when I'm able to get enough... One day I commented to Fred that I actually got a decent night's sleep the night before, and Elise, overhearing this said, "I can tell... you're not as cranky this morning."  Gee... thanks.

-Everybody has a story, and they are all important... even if you don't think so.  I speak at a newly diagnosed class at our Children's Hospital on behalf of our support group every month.  Last month a couple came up and thanked me over and over for telling my story.  Their child had just been diagnosed at a very young age and they were so scared of all the things they wouldn't be able to do; school, travel, sports, etc.  They told me that just hearing about all the things we've done with Elise helped them to see that their baby will be okay too.

Wednesday, April 2, 2014

Diabetic Dabs Winners!

Okay... I know I said I'd announce the winners Monday.  Or maybe I said I'd do the drawing on Monday.  Either way, I didn't.  But I did the drawing yesterday and I'm posting the winners today, so... sorta win?

At least it's this week.

Here's my lovely assistant, Vanna... Er, Elise helping with the drawing.  She donated her hat (notice that it matches her outfit... she wanted me to point that out) to the cause.

Winner #1... Lulu's Mom!

And winner #2... Colleen!

 Congrats you two, you are now the proud owners of a box of Diabetic Dabs (adorable girl not included)!

Please email me your address (joanne at death of a pancreas dot com), and I will send them right out to you!

Sunday, March 30, 2014

Her Sam: revisited

Last night I was watching the end of Lord of the Rings: Return of the King.  And when it got to the part where sweet, brave Samwise Gamgee carries Frodo on his back to the fires of Mount Doom, it brought back a post I had written years ago.  I wanted to re-post it because D has been kicking our butts lately. Sometimes I get so caught up in the craziness of dealing with this disease that I lose sight of what is most important of all... 

If you've been reading this blog for awhile, then you know I love Lord of the Rings. Although Frodo is the protagonist and main hero of the story, he's not my favourite. Legolas and Aragon provided some great eye candy in the movie, but they didn't take top spot either. And while I can totally identify with the craziness of the Gollum/Smeagol thing, he/they aren't it either.

The one character that gives me the warm fuzzies is Sam. Sweet, lovable, Samwise Gamgee. Frodo's gardener-turned-sidekick for the epic journey to destroy the ring.

As Frodo became weak under the burden of the Ring, Sam carried most of the luggage, cooked, kept watch at night, and rationed the food so he and Frodo had enough for the journey. He protected and took care of Frodo as they moved through the dangerous lands toward Mordor.

At one point, on Mount Doom, Frodo collapses. Exhausted, he can go no further. Sam, while exhausted himself, tries to rally Frodo. He asks him to remember all the wonderful things about the Shire; the orchards that will soon be in blossom. The birds nesting in the hazel thicket. Summer barley and the eating of strawberries with cream.

Frodo cannot. He is done. Seeing this Sam yells, "Come on, Mr. Frodo. I can't carry it (the ring) for you... but I can carry you!" and slings Frodo over his shoulder to carry him to the end of his task.

That scene? Chills. Every time.

We all need a Samwise Gamgee in our lives. For the times when we collapse under the burden of our ring and have nothing left to give.

And I hope to be this for Elise as she grows up and the ring becomes her burden to bear. Right now it is mine. And that's okay. I would carry it forever if I could.

But I know that when she grows older, there will be days where she feels like Frodo on Mount Doom. So weary and tired. The responsibility and never-endingness of the disease will take it's toll on her.

And I pray I can be there for her; unable to bear the burden for her, but more than capable of carrying her when she can't walk. For as long as I am able, I will travel this road with her, making the epic journey and lifting her up when she needs it. I will remind her about the orchids, and the strawberries with cream.

I will be her Sam... for as long as she needs me.

Don't forget to leave a comment on this post to win one of two Diabetic Dabs Packs!

Wednesday, March 26, 2014

A Diabetic Dab'll do ya!

Sometimes I feel like Lady MacBeth muttering, "Out, damn spot!" when I see my daughter's laundry.

Spots of blood on her linens.

Dots on her pillowcase.

And lately, smears on her pants.  My daughter has decided that it's acceptable to wipe the blood from a BG check on her pants.

There are so many times we find ourselves without something to wipe her finger with, so I understand why she's using her clothes as a substitute.  I just wish she wouldn't.

Enter Diabetic Dabs.

Created by Liz Sacco when her oldest of four boys was diagnosed with Type 1, Diabetic Dabs were born after two years of searching for a solution of what to do with excess blood from finger pokes. What resulted was a simple, inexpensive and convenient way to keep the clothing of T1s spot free!

I was recently given a chance to try out Diabetic Dabs, AND host a fun giveaway.  Woo hoo!

I wasn't sure what to expect when I received them, but was pleasantly surprised by the softness of the dabs.  And that they were holey (that is; full of holes.  Not consecrated to God or a religious purpose).  They feel a bit like the hypafix tape we use to secure pods and dexcom sensors.  They're very absorbent, non-toxic, and easy to tear off and throw away.
Obligatory size comparison
Now, we may or may not have used the same sheet for more than one finger poke.  Because I'm frugal like that.  If I had my way, each pack of dabs would come with a little piece of cardboard that would sit behind the sheet in use, so the blood doesn't seep through to the next one (sort of like of like how you use that plastic flap in your duplicate chequebook).  

But I understand that this is not how the dabs were meant to be used, so it's not a big deal. I do wish that they were a bit smaller, because I feel a bit wasteful in throwing away such a big square with a tiny blood spot on it.  Just my two cents. 

The dabs come in a pack of 50 (4 packs to a box), and have an adhesive backing so you can stick them in your meter case and always have them with you.
My daughter case with dabs affixed.
Each box has 200 dabs and is $9.49 (shipping included), and can be purchased through their website.  The price goes down the more you buy.  It might sound a bit pricey, but if you add up the cost of using kleenex, paper towels, and clothes ruined from blood spots, and multiply that by the grossness factor of wiping your fingers on unsanitary surfaces like your meter case, then it's a pretty good deal.

Plus, don't forget you're supporting one of our own, as well as the best cause ever!  Diabetic Dabs donates a portion of the proceeds from their sales to Diabetes research.

I love it when a member of our community is able to create something to fill a need we have.  

So... onto the giveaway.  I have two boxes, which means there will be two winners.  To enter, just leave a comment telling me the grossest place you (or your child) has ever wiped their finger after a BG check.  I will randomly (read: have my child pull two numbers out of a hat) pick the winners on Monday.

Good luck, and happy wiping!

Random, but cute shot of my little man trying to destroy the vacuum.
He's the reason I never have time to write anymore.

I was provided samples of Diabetic Dabs as well as two extra packs to give away, but all opinions are my own. Free stuff is great, but nobody tells me what to say!

Wednesday, March 12, 2014

Almost Wordless Wednesday: Spring Break Wishes and Blood Sugar Dreams

This is what spring break does to Elise's BG.  That first small hill is breakfast.  Lunch is in there too somewhere.  The "lows" (in red) are not really lows; when checked, a nice low-100, or high-90 would pop up (we have our low threshold set for 100).

After the blood sugar hell that was January and February, it's a nice break for us too.

Wednesday, March 5, 2014

Reading, Writing, and Advocating

I've told Fred several times since the beginning of school, that I would probably fail Kindergarten if I took it now.  Gone are the days of naps, snacks and learning not to eat glue.  One time Elise came home with a project that she had to collect different types of leaves, group them, and then write comparative sentences about the leaves.  

Whatever happened to finger painting?

Anyway, her latest project was to make a paper doll out of an inventor, complete with a 3-D version of their invention in the doll's hand.

There were examples for her to choose from, or she could come up with one on her own.  She didn't care for any of the choices, So I asked her what was something in her life that was importnant to her.  Her first answer was, "family"  (awwwwwwww).

We talked some more and then her whole face lit up.  "I know Mama... INSULIN!  That is SO important to me! Can I make a doll of that doctor guy from Canada who invented insulin?" (swooooon)

So let me introduce to you Elise's Dr. Banting doll... complete with Humalog in his hot little hand.

This is one project that will make it into her keepsake bin.

Monday, March 3, 2014

Things diabetes taught me this month... February edition

I didn't do one of these last month.  For the reason why, just read my last post.  I hate when it happens, just apparently not enough to make a half-assed attempt.

-For some reason the DOC seems kind of empty lately.  It's especially void of D-Mamas. I guess I just miss the early days of blogging when there was so many of us out there, and so much support.  But it's nice to see people are still reading (and nominating).  I saw that  for the month of January I won Best of the Betes for "Best story of a D-mistake" on Unexpected Blues.  Thanks Heather!  And I also just saw that I was nominated for February.  Thanks to those who take the time to send in my name... it really means a lot.

-An electric shock will skyrocket a BG. Just ask Elise. She was cruising along in the 130s with a flat arrow when she decided she was going to help me out by unplugging the vacuum.  I guess she touched the metal prongs as it was half pulled out... poor little girl, it hurt her pretty badly.  Next thing I know, the dex is buzzing with a 159, double arrows up.  Adrenaline much?

-Sometime diabetes can be such a shit-disturber.  Or as my friend Jess put it, "If diabetes had a face, it would be an arrogant smirky asshole face.  Like a young Kurt Russel or maybe that jerky blonde Cobra Kai kid from the Karate Kid" (oh Jess... I miss you).  For the past two weeks, Elise has been high.  All. The. Time.  I am not a big fan of changing basals.  I hate it.  Like, really, really, gouge-my-eyes-out, while listening to the Christmas Shoes song sung by Alvin and the Chipmunks hate.  I mean, I will change them, but I usually run temp basals to see if it's going to eventually swing back the other way, or if her settings really do need changing.  So for two weeks, I ran temp basals.  Tweaked them so I could figure out what the permanent change should be.  I finally took the plunge and we had one good day.  Then she was LOW ALL STINKING DAY for the next three.

I bet you're wondering if I changed them back.  The answer to that is no.  I ran negative temp basals and eventually things normalized.  Wax on.  Wax off. (I wanted to add an expletive here, but I think I've sworn enough in this post).

Monday, February 24, 2014

To sleep, perchance to dream

I'm tired.

Actually, tired doesn't capture it.  Exhausted misses the mark too.  Honestly?  I don't think there is a word in the English language to describe this feeling.

For more than two months, sleep has been coming at about 45 minutes at a time, less than 4 hours a night. I can't remember a night when I haven't seen every hour on the clock.

One night I went to bed at 11:30 pm and woke up at 12:30 am.  For the night.

It isn't all diabetes; we've had ear infections, upper respiratory infections, teething, adenovirus x3, night terrors, a baby who wants to nurse a least once a night, rashes, toddlers that wake up at 2:30 and declare themselves "awake for the day".

And then there was that time that Elise threw up all over her wall, bed, herself... and then went back to sleep.  There's nothing quite like walking into your child's bedroom for a 1:30 am BG check wondering, "what's that smell?" 

And of course, interspersed in all of that is diabetes, and the highs, lows, and ketones that comes with it.  Because diabetes has been such a jackass of late, no two nights are the same, making it impossible to make adjustments.  So every night we've been up either fixing a high, feeding a low, or setting temp basals to ward off both.

So.  I'm tired.  And it's stealing my joy.

I don't like the person I've become; I yell a lot.  I'm too tired to have fun with my kids. The thought of cooking, cleaning or doing anything domestic exhausts me to the point of tears.  I can't write. And worst of all, I can't even make sense of Elise's numbers anymore.  There is so much that needs fixing that I don't know where to start.  I can't spot a trend to save my life because my brain has turned to mush.

The other night, all three kids needed us at the same time; Lucas was crying, Mattias was having a night terror, and Elise was low.  It was 1:00 am and I had only been asleep for 30 minutes.  I turned to Fred and told him, "I wish I were dead."

I really don't, but there is a reason that sleep deprivation is a form of torture.

I usually try to find a nice, tidy way to end my blog posts... but nothing has come thus far; except maybe this:

And so, she fell into bed at an enviable 10:00 pm and slept blissfully, uninterrupted, until the morning alarm rang out it's greeting at 6:00. She awoke, feeling refreshed, and marveled that every morning should feel like this one.  From then on, she slept happily ever after.

The End.