And then... Diabetes

Today has been one of those days.  Admittedly, it's only halfway over, but I am all the way done.

Today has sent one of my children into tears anytime you talk to them.  Crying because they have to sit on the toilet, eat breakfast, sit at the table, wear shoes (or anything on their feet).  Crying because they are not allowed to wear pyjamas out to run errands, the dog is in their way, and it's too hot out.

So. Much. Crying.

Today it took almost 60 minutes to leave to house.  Because of wardrobe issues, foot ware issues, having to poop/not being able to poop x 2 (kids, not me), and our dog going missing.  Turns out she was locked in the office, and hadn't run away into the back field like I thought she had.

Today was supposed to be a day of running errands to three different stores, but we only made it to two, because I might have been a little afraid that I would leave my children at the last stop... accidentally on purpose.

Today one of my children decided to wear shoes that were too small (despite being warned), and ended up with ginourmous, painful blisters on their feet. This necessitated said child having to ride on the side of the cart, which resulted in said child knocking a bunch of salad dressing bottles to the floor as we were trying to pass another cart.

Of course, because today was today... the plastic bottles broke and ranch splattered everywhere. Much like my hopes for today getting any better.  Clean up on aisle 8, please.

Today the store was out of milk.  And Orange juice.  Meaning I'll have to go back at some point.

And the child in the second paragraph?  Still crying.

And it's times like these that diabetes always decides to be a jerk.  It's never when I'm sitting on the sofa with my feet up, noshing on some bon bons (she said, sarcastically).  

Nope, diabetes seems to like to poke it's head in when I'm losing my proverbial shit.

Because today, a dexcom sensor was ripped off as Elise was getting dressed.  A three-day old sensor.

Being blind during the warm-up period, we didn't know she was going high.  Because of Nightscout, I had my raw data, and it was telling me she was running in the high 100s (normal after breakfast). The 2-hour check put her closer to 300. So we corrected off that number.

That correction plummeted her to 40. She was barely coherent. It took her 30 minutes to get better.

As an aside: I'm pretty sure meter accuracy is the culprit on this one. Even though the strips are testing in range with the control solution (albeit, on the higher end), every 5 strips or so, we notice a huge discrepancy between the meter and dex.  Today, we checked twice (to calibrate dex), and both numbers were around the same. 

So I'm deciding to to send today to time out.  Along with my children.  Because I've got some bon bons to eat.

Her Fight Song

"This is my fight song
Take back my life song
Prove I'm alright soooooooong!'

The lyrics blasted loud and strong from my backyard, not from the radio, but rather the lungs of my 8 year old baby girl.  She was flying high on the swing, her hair flying behind her, legs keeping time with the rhythm of the song.

"My powers turned on
Starting right now I'll be strong"

I moved to the window and silently watched her as she belted the words out for the whole neighbourhood to hear.  Tears started to well up in my eyes.

"I'll play my fight song"

Diabetes has not been nice to her lately.  We had a long fight with pneumonia, during which we battled super high numbers. She also got food poisoning a few days ago.  Her dex graph is so ugly I can barely look at it.  

And still she marches on.  Worn, but not beaten.  Tired of this life with type 1, but not ready to give up.  That day she seemed to be telling diabetes where to go and how to get there.

"And I don't really care if anyone else believes
'Cause I still got a lot of fight left in me"*

I believe it baby girl. I'd be a fool not to.

*Lyrics from Fight Song, written by Rachel Platten

Sometimes...

Things have been rough lately.  Diabetes has been a big, stupid jerkface, and Elise is collapsing under the burden of it all.

The other day we had a meltdown of epic proportions. My heard was breaking because I couldn't fix it.  She's hurting down to the depths of her soul and I can't do anything about it. It was haunting to listen to.

She's right... Diabetes is awful.  And horrible.  And not fair.  She's right to ask, "why me?"

But what, as parents, can we do about it?  We can hold their hands. ease the burden in any way possible, validate that their feelings about diabetes are okay (though I've had some argue with me about this.  That's another post for another day), and love them as best we can.

But there is no tangible way to help.  And that's the kicker.

I went to bed that night with a shadow resting over my heart.  I replayed her sobs in my head, feeling like an utter failure.

It's my fault she has this.

My fault her numbers have been erratic lately.

My fault because nothing I do fixes them.

My fault because by now, I should know what to do.

The next morning I awoke with a renewed determination.  First and foremost I wanted Elise to know how proud I am of her.  And how she constantly amazes me with her strength.  And even though diabetes is hard, she is bigger and better than it, and it won't beat her.

So I wrote it down in a note and tucked it into her lunch bag.  Usually I write her jokes, but that day she needed more than a laugh.

There were quite a few calls from the nurse that day (because of the erratic numbers), and I could always hear her in the background; she sounded in good spirits. Usually multiple nurse visits cause major grumpiness.

When she got home, she bounced off the bus to meet me and gave me a big hug when we got in the house.  Then she said this:

"You know that note you wrote me?  Thank you.  It made me smile.  I also read it to M (other girl n her grade with d), and it made her smile and happy too.  And then we talked about how hard diabetes is.  Can I keep the note forever and look at it when I need to?"

With that, she showed me exactly why I wrote the note.  Because it's true.  All of it; she's amazing, and brave.  Strong and a fighter. There are days when diabetes will get her... but she'll prevail in the end.  I know it.

And sometimes... even though I feel like a failure when it comes to diabetes, it's nice to know that I can get it right.

The Trifecta

Her pump wasn't working, her sensor fell off and her BG was 409.  Time for a pump change, sensor change and a shot.

Around here, that's what is known as "The Trifecta".  Thankfully it doesn't come along very often.

Dazed and confused

That's how I feel. Dazed and confused and wondering just what the hell is going on. We are still battling terrible lows post-meal.

On Saturday, Elise came back from her weekly breakfast with Fred complaining that she didn't feel well. She was 45. We gave her 18g and she only came up to 80. And 30 minutes later she was 55 and feeling awful. It took 2 cups (as in 500 mL) of orange juice to get her to 100 and finally feeling better. She ate a 25g lunch for which she received no insulin. Two hours later she was 132.

It was scary. I've gotten to the point where I am afraid to bolus her. I've adjusted her I:C ratio twice, and cut the suggested bolus in half. We still end up in the 70s.

To give you an idea how much her insulin needs have changed, here's what they used to be:
12a to 9:30 - 1:15
9:30 to 12a - 1:30

According to my math, this is what her new I:C ratios should be:
12a to 9:30 - 1:40
9:30 to 12a - 1:90

How can that be?

I don't know what the what is going on here. She doesn't appear to be getting sick. If she doesn't eat, she stays pretty stable, so I'm pretty sure her basals are okay. I feel out of my league here. Over my head.

And worst of all, I feel like I'm failing Elise. These past 5 days have really taken their toll on her. I need to figure it out. These ratios are far below what they were when she was on MDI.

School is looming on Tuesday, and unless I can figure this out, there is no way I'm letting her out of my sight.

The day the beta cells died

Three years ago today, Elise was diagnosed with diabetes.

The call to take her to the hospital came in the middle of her birthday party.

She was 12 months old.

So how did Elise's pancreas celebrate? I think by completely quitting on us. The amount of insulin we have given her over the last few days is incredible.

We gave her TWO shots in the middle of the night. That is unprecedented.

We used full strength to correct her. Also unprecedented.

She spent most of the night in the 400s, only dipping into the mid 200s after a 1/2 unit of full strength.

Today was also her first day of school. She felt awful. She bawled when we left her. She was high the entire morning.

Today I hate diabetes just as much as I did 3 years ago.

This picture was taken right before Elise's diagnosis. As I searched through the pictures from that time period, I was hard-pressed to find one in which she was smiling.

Low? Or tired?

After putting Mattias down for his nap, I came downstairs to find this:

Thank goodness she wasn't low... just tired.

Moments like these should make my heart swell with love.

Not stop in fear.

Stupid diabetes.

The sun bloody well better come out tomorrow

Kids have it easy. When they don't want to do something, they can lay down on the floor, kicking and screaming until they get it out of their system.

Or they can stomp around, grumbling under their breath.

Or even just sit in their bed and pout. All of these sound like a fantastic way to get rid of the pent up rage I've got brewing.

Remember my craptastic day I posted about a few days ago? Well, today would have put that one to shame. I will spare you the blow-by-blow, but my evening culminated in the fire department coming to break into my car outside the ice rink after Elise's skating lesson because I had locked my keys in the car. Actually, I'd left them in the ignition. At least it wasn't running.

My spare set were in my husband's pocket. Unfortunately, he was 25,000 feet in the air somewhere between Atlanta and Dallas. So I called Laura who gave me my city's non-emergency number and the calvary was on their way. Thanks Laura, for being the ray of sunshine beaming into my porta-potty day.

But the worst? D decided to not play nice this time around. So on top of dealing with crappy situation after crappy situation, I was chasing numbers all over the place. I just wanted to lock myself in the closet and scream the "F" word as loud and as long as I could.

Today I was done. As in, I don't want to do this anymore. Like an angry child, I wanted to kick diabetes in the shin, take all my toys and go home.

I am so tired of carb-counting, weighing food, the smell of insulin, numbers that don't make sense, interrupted sleep, finding test strips strewn about my house, all the crap I have to haul around, shots, finger pokes, ketones, stuffing food into a sleeping child's mouth. Everything. All of it. Done.

But there is no done with diabetes. We can't just walk away. In fact, just having the desire to do it makes me feel as guilty as hell. And one day this will be Elise's life. She too will feel done, and utterly trapped by the fact that she never can be.

Today, diabetes can suck it. I am giving it the proverbial middle finger... sit on it and rotate, D.

Maybe if I ask nicely...

Dear Diabetes,

I wonder, do you have a pact with the universe to bring it at the most inopportune times? To kick us when we're down? Do you see us in difficult situations, call up the universe on his cell phone and tell him, "it's go time!"

Because that's what it seems like to me. Realistically, there's never really a good time to deal with you when you decide to rear your butt-ugly head. But really, some times are better than others.

Like, why do you decide to crash Elise's BG while I'm nursing and alone? Kinda hard to treat a low BG while you have a baby attached to your boob. And do you know what happens when you pull the baby off in the middle of you milk letting down? Milk shower for everyone... YAY!

Or take for example the other night... it's just me, all by my lonesome, and it's time for Elise's BG check, snack and shot. Mattias also needs to eat and is getting quite fussy. So I check her BG, make her snack, prepare her shot, then settle down to feed Mattias while she eats. For some reason, she decides to get upset about something, drop her yogurt all over the carpet and then start to scream. Which freaks out Mattias; he stops feeding and starts to cry. Then spits up all over me and the sofa. And then refuses to feed.

Meanwhile, I have no idea how much of her yogurt Elise has eaten, how much is now on my carpet, how how many carbs I need to replace. Seriously... do you find situations like these humourous?

Or how about this past Friday... date night. I use the term "date night" rather loosely since dragging 2 kids and three bags o' crap to dinner with you, is in no way a date. But it's okay, because someone else is doing the cooking.

So why, 30 minutes after dinner, is Elise's CGM telling us her BG is 48 with double arrows down? And why while we're driving? Do you know how hard it is to check a BG while in a moving car? Of course you do... that's why it happened this way. And why, after stuffing 20g of smarties and fruit snacks in her, does the CGM still read LOW with a slanting downwards arrow? And why won't Mattias stop SCREAMING?

Look, all I'm asking for is a bit of a break. I'm tired. I'm beaten down. I'm stressed and I'm sad and I'm struggling. I just need you to go sit in the corner and behave for a bit, okay? Please?

Thank you for your attention in this matter.

Sincerely,
Joanne

Halloweenies

Another Halloween has come and gone, and yes, D reared it's stupid, ugly head. But I just pretty much ignored it. I figured one night off couldn't be a bad thing. And just to add to the fun, Eileen has decided to shrug her shoulders and give us the ??? for the last 3 hours. Terrific.

Anyway, here's some pics of our little Halloweenies!

Check out the size of that pumpkin!

Mattias in his Halloween shirt (a present from Megann)



My lil pumpkin



One day he's going to be so mad at me for doing this to him

The princess and the pumpkin

Go Rangers (yeah, I know...)

Ready to trick or treat!

This guy tricked out the walkway to his front door... the sign says "Welcome to the Insane Asylum. Wait, I thought that was MY house

Waiting for the candy

Elise, Mattias and I... you don't want to know how many people ask me if I'm STILL pregnant while wearing this wrap. People, that's a FREAKING 7 week old baby in there. Come on!

All this snuggling wears me out

Happy Halloween... and GOOD NIGHT!

My Mama told me there'll be days like this

Okay, I know that Thursday is no D-Day, and that it's Thursday somewhere in this wide world of ours... but it's sure as hell not Thursday here yet, so I'm going to post about my craptacular day.

Really it's Tuesday's fault. Why? Because Tuesday was the first day I was left alone to care for two kids plus diabetes. And Tuesday went so well that I thought I was the most amazing person in the world. Seriously, I couldn't have choreographed a better day... great numbers, the D-monster behaved, Mattias slept like a dream, dinner was all set to go by 10:00 am, Elise was well-behaved and the best helper I could ask for. It was all so beautiful.

Then I went to bed and the sun came up and lo and behold Wednesday was upon us. And everything that could go wrong, did. Mattias wouldn't sleep, in fact all he did was scream. And he peed through a diaper all over my clothes. And screamed the entire time I was in the shower, cleansing myself of the urine. Elise's attitude was as bad as the summer heat in Texas. I think all I ate today before dinner was a piece of toast. And let's not forget how I sliced open my toe tripping over a chair.

Elise's BG was on a roller coaster ride the entire day. After her morning snack, Eileen got in on the act and showed me a 96 with double arrows down. The meter showed 81. After 5g more and 15 minutes later, Elise was 72 on her meter and Eileen said 80 with double arrows down (this is also after a 15g snack). Mattias was in his bassinet, screaming to be fed. But I couldn't leave Elise until I got her BG up. It was awful... my heart was being ripped in two listening to Mattias cry.

All I wanted to do is sit down and cry, but there wasn't even time for that. Tonight we went up to our church for dinner and all it took was one friend asking me how I was doing for the water works to start. And they've been off and on all night. Even poor Jessica had to listen to me blubber.

I know... there will be good days and bad days, but this one just took all the wind out of my sails. Perhaps it was just the let down from my triumphant Tuesday, I don't know... but I just feel like I've been knocked down and I don't even want to get back up.

But I have to. Because D doesn't take a day off, and so neither will I.

I made a mistake

I am human. I am not a pancreas, although I try really hard. And as much as I hate it, I make mistakes. What makes it so hard to handle is that they affect my daughter. My screw-ups hurt her, and it kills me.

Within the past week, there have been some evenings that we've added some diluted Humalog to Elise's nighttime NPH shot, so she can enjoy an extra treat. We've discovered the vast bevy of frozen yogurt shops, and we've found that if we time it just right, Elise can have about a 15g serving. And if we add the right amount of DH to her shot, it all evens out.

The problem lies in finding the right amount of DH. Elise's ratios are a bit weird, especially right now since her illness. She's about 4:1 (4g of carbs to every 1 unit of insulin - remember, she's on diluted) at breakfast, and 3:1 at dinner. She doesn't have a lunchtime ratio because she's on NPH. Also, all her snacks are uncovered.

Last night, I screwed up. I thought I had it all figured out. I didn't. The problem was two-fold: I think I over-shot my WAG at how much insulin she should get, and I lost track of time and gave her her bedtime snack about 45 minutes too late. It was a perfect storm.

For almost two hours, her BG hovered in the 60s. It was late and she needed to sleep, but I couldn't put her to bed like that. The extra carbs I put into her just maintained her BG; though I knew it was just a matter of time before it all caught up to her and her BG went through the roof.

Finally at 11:15, she could take no more, so I lay in bed with her; waiting for the moment Eileen would show me the beautiful sight of an upwards arrow. And as I watched through my tears as Elise slept, I cursed myself and this stupid disease.

How is it fair that when I make a mistake, it hurts her? It is my screw-ups that cause her harm, and I remain unscathed. I should be the one feeling crappy. It should be MY tummy that hurts, not hers. I made the mistake and she pays the price.