Tuesday, August 30, 2011

Do people read their own blogs?



I'm curious to see how long it will take Joanne to realize that I've hijacked her blog in order to tell the DOC that today is her birthday...

The 2011 mother-of-the-year didn't have a great start this morning.
I (Fred) got locked out of my car at 6:30 in the morning while 45 minutes away from home and trying to get her the best cake in the world (as a surprise).
I got the cake but I also got home at 9:15 (instead of 7:15 so I could get the kids ready and she could sleep in - I always take the day off work on her birthday).

Her day should get better after a 4-hour spa treatment and with the arrival of her mom this afternoon.

Happy birthday to the best mom in the world!

Lucky husband

Monday, August 29, 2011

An update and reminder

Thank you to everybody for your suggestions and comments on my "ouch" post. When I took off Elise's last sensor, the skin surrounding insertion site was obviously infected, so we are definitely going to have to try something. I have a call into our endo to see if I can snag some samples of the products that were suggested. I just don't want to go out and spend a bunch of money on something without knowing if it will work.

Elise has been such a trooper and even agreed to trying a bum site (after I told her she could have a surprise from my stash of toys bought at Target for 75% off). We've been seeing a wide variance between CGM and meter, but the sensor doesn't seem to be be bugging her too much.

I just hate that such an integral tool for us is causing Elise so much misery. Hopefully, one of the many suggestions will do the trick.

And If anyone else is having similar issues, Jessica (thanks Jess!) dug up an old post by Lorraine from This is Caleb for me. Click here to see some of her suggestions.

And... just a reminder that tonight is our big fundraiser at Chick-fil-a! Come out between the hours of 5 - 8 pm, and CFA is donating a percentage of the sales to Team Elise. If you live in the metroplex, please come out and Eat Mor Chickin with us! Click here for the address.

Hope to see YOU tonight!

Friday, August 26, 2011

Ouch

I'm sending out the bat signal once again to the DOC. I'm at a loss with what to do with the dexcom. The sensor is causing terrible rashes on Elise's arms and legs. She is so itchy while she's wearing the sensor, and the rash remains as long as almost two weeks after we remove it.

We're pretty much at the end of the road with where we can put it. She has a rash on every site we use. I've asked her about using her bum, but she's not so enthusiastic about it. I know I could push the issue, but from what I've read, most of you don't have a lot of luck with bum sites.

Here's a picture of her leg... I think the sensor was removed about 12 days ago.


I tried giving her a break, but it lasted 1/2 a day... her numbers are just so weird right now (plus I was too scared to go without it at night while Fred was away). But we really need her to be able to wear it when she goes back to school in about a week.

I just don't feel comfortable sending my 3 year old to school without the dexcom. In fact, we will have to pull her out if she's unable to wear it. This will absolutely break her heart, she's been asking when school starts almost everyday for a month.

Plus, will this be a problem when we start her on a pump? Will we have rashes and itchiness in two areas? Again, we absolutely will not put her on a pump if the same thing happens. She is so miserable and I don't know how to help her.

Surely Elise is not the only one out there with sensitive skin... I'm not sure why this is a problem all of a sudden. She's worn the dexcom for over a year now. Could it be the hot weather? Anyone out the have any advice???

Wednesday, August 24, 2011

See you on Monday

If you're a big Chick-fil-A fan and you haven't seen the "See you on Monday" video, you have to see it:





And, if you live in the DFW area, this is just a reminder that we would love to see you on Monday...

This Monday, August 29, from 5 to 8 PM, the Chick-fil-A in Southlake is again donating a percentage of the proceeds from your meals to Team Elise.
Last year, 60 of you joined us for dinner (along with 63 kids) and we raised over $400!

Click here for the address.

BTW, if you're able to and you haven't made a donation to Team Elise or registered to walk with us, just go to
http://www.teamelise.com/ and click on Donate Now from any page or on Join Team Elise from the Walk page.

A big thank you to Chick-fil-A Southlake for supporting Team Elise again this year!

See you on Monday...

Monday, August 22, 2011

Fiddle-dee-dee... tomorrow's another day

Yeah... last night sucked. Mattias screamed, Elise went low, and there was very little sleep. And tonight wasn't much different. Except that Elise's BG is doing okay, and Mattias only screamed for 2.5 hours.

But you know what? I'm okay. I mean, I'm still fall-on-the-floor exhausted, but I'm not falling apart at the seams like I was last night. Because today, I was the recipient of so many blessings.

First, by my DOC peeps. Waking up and reading all those encouraging comments really helped set the tone for today.

Then, my friend Liz dropped by with some lunch, and we spent a few hours talking and playing with the kids. It was so nice to have an actual, real live person to talk to!


Later, Fred emailed me to tell me that Team Elise hade received a donation from someone who reads my blog. Their generosity blew me away, and completely made my day. Thank you Janine!

And then tonight I received a phone call from my sweet friend Ruth. She lives in China and just hearing from her was the cherry on top of all the goodness that surrounded me today. But wait... there's more! Ruth had dinner delivered to my house. Ruth ordered pizza for me. From China. From the future (it was already Aug. 23 there). How awesomely amazing is she?


Although the some of the events of today were very similar to yesterday, one thing was very different... I didn't feel so alone.

Sunday, August 21, 2011

I don't think I can do this

*** Warning... vent ahead***

Fred has left on a business trip again. It's just me, the kids and diabetes. And it seems everybody is intent on misbehaving. Yes, even me.

Long story shot, Mattias will not nap. Will not sleep. All he does is SCREAM when I put him in his crib. Tonight he has screamed for almost three hours. And of course diabetes is being a pain in the ass, so all I can do is leave him scream, because Elise's BG is running low and the dexcom keeps alerting me.

He calms down when I rock him, but I can't be tied up like that because I need to be free to do BG checks and treat lows. I haven't slept at all in the last few nights and I seriously feel like I'm loosing my shit.

Right now it's 11:00 at night and I still haven't eaten dinner. I should probably be eating instead of rambling on like an insane person, but I'm too tired to even throw something together.

I think he might have stopped screaming, but if he follows the trend of the last few nights, he'll be starting up again soon.

Plus, there's that low BG that just won't go away.

I seriously don't think I can do this.

Friday, August 19, 2011

Move

I was thinking about life with D the other day. How it has caused a lot more "movement" in my life. Amy likened it to a mouse on the wheel the other day... running, running, but not really going anywhere. And while that can be true, I'd much rather handle it like the video below.

It is a marvelous piece of work. As I watched it, I thought, "this... THIS is what life with D should be like. This is how I should be moving".

With purpose.

Determination.

Not too quickly.

Enjoying the different places D will take Elise and I.

Taking in the sights.

Having fun.

Appreciating the journey.

But still moving forward. Not standing still. Nor going backwards.

This is how I want to move.


MOVE from Rick Mereki on Vimeo.

Tuesday, August 16, 2011

More than a number

***this post is a follow up to my last post. If you find it confusing, you might want to scroll down and read "38" first.***

I don't normally let one number get me down. Oh, I used to when Elise was first diagnosed. Every out-of-range number was a failure on my part. I took those numbers hard.

Then I figured out that I was seriously lowering my life expectancy by doing that. So I adopted the mantra, "one number (or two or three) does not a bad pancreas make".

And I was able to walk around with my head held a little higher, and a stomach a little less knotted after that.

But sometimes all it takes is one number to knock the wind out of my sails. One little number; magnified by the circumstances surrounding it.

The night before the 38, I really didn't get much sleep. Fred is out of town, so I am flying solo. Diabetes and an 11 month old who shall remain nameless tagged-teamed me all night long to ensure that I didn't get any sleep. Total suckitude.

So the next night, I was looking forward to getting a good (oh, who am I kidding), a semi-decent night's sleep, when the number 38 slapped me in the face.

When it happened, I was on the phone with my Mom. The sound of the dexcom emitting it's three yelps wafted down the stairs and I started to grumble, "looks like the dexcom is going to act senile tonight too".

Because the night prior, it wasn't so much D that misbehaved, it was the dexcom who kept telling lies (tell me lies, tell me sweet little lies...). Like Elise was 89 with double arrows down when she was 161. This went on all freaking night until 4 am, when she really was low.

So I hung up the phone and went upstairs to see 81 slightly down. Not too worried, I checked her and that's when the 38 popped up. Expletives were uttered. A sleeping child was woken. Smarties were administered. All the while I felt like I was going to throw up.

Like I said, it's not so much that one number that freaked me out, but the circumstances;

It was unexpected.
When your child has just eaten 15g of uncovered snack, you don't expect their BG to go down. You just don't. How can you do battle with a disease that does the opposite of what should happen? How can I rest knowing that no matter what I do, diabetes likes to throw these curves at us?

It was night time.
There is something that is just so much scarier when these numbers occur while you are surrounded by darkness. It makes it feel more ominous. The blanket of night seems to enforce the fear that comes with lows.

I was alone.
I know that the day will come when Elise will be by herself and experience a bad low. It rips my heart to pieces to think about the fear that she may feel when it happens. I know how hard it is for me, and my senses aren't even affected by the symptoms of a low. It is far less frightening to have someone there by your side. To put their arm around you to calm the shaking. To help you catch your breath after a close call. To quiet the thoughts of, "what would I do if..."

So no... one number does not usually send me into such a panic. But sometimes events swirl into the perfect storm and that number can leave you feeling like you were pummeled by gale-force winds.

Sunday, August 14, 2011

38

It's a number that leaves you shaken. Seeing that 3 followed by just one number.

Two digit numbers that start with a 6... okay. A 5? I can handle that. Give me a four... well, it's not terrific, but I can deal.

There's something about the three that terrifies me. Maybe because another time I saw a 3 and just one other number, I had to deal with an awful low. By myself. In the middle of a store. It took almost 30 minutes for Elise to come back from that one.

Tonight I saw the 38 at a time when there was no way her number should have been that low. And if not for the dexcom, I would have missed it. The mere thought is horrifying.

Let me explain something... Elise gets her night time shot at 8:00, followed by an uncovered, 15g snack. Her insulin starts to work about 2 hours after her shot. This low happened about 90 minutes after her shot. Only 60 minutes after she finished her snack.

She should not have been that low.

Or low, period.

But this is diabetes we're talking about. It doesn't play by any set rules. The only constant with diabetes is that there is none. It makes me feel defeated.

How am I supposed to hit a target that is always on the move? And when I'm blindfolded? With one arm tied behind my back?

How can anyone?

Thursday, August 11, 2011

Her Sam

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 its 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.



Saturday, August 6, 2011

A belated thank you to Chick-fil-a... and diabetes

Oh my, this post is so over-due. Back in May, I was awarded the Southlake Chick-fil-a Mother of the Year. It came right as we were closing on our new house, packing all our worldly belongings to be moved to said house, as well as getting ready to leave on our trip to Portugal in two days. Crazy times.

I was honoured with a plaque, a dinner for 30 of my friends, and FREE Chick-fil-a for a YEAR!

It was a celebration that was difficult for me. Because so often, I feel like I fail at this motherhood thing. I yell. I loose my cool. A lot of times I revert back to acting like a child. Chick-fil-a totally should have done a hidden camera thing to get the REAL truth about my Mom-skills.

But one thing I do know... I am a better Mom than I ever would have been, if diabetes not came into our lives.

Diabetes has taught me patience. Waiting for that BG to rise/fall. The "rule of 15s (which in our house is more like the rule of "whatever we think will work this time"). Shoving carb after carb into Elise, trying to get a stubborn BG to rise above 80.

It has given me mad trouble-shooting skills. How many nights have I spent pouring over Elise's logs, looking at numbers and trying to find the answers that are hidden among them? Quite a few. And it still amazes me when I tweak something, and it works!!!

I am not the type of Mom who, when her child falls and gets a minor owwie, will rush over to them with an ice pack and administer first aid while covering them in kisses. It's just not how I'm wired. I subscribe to the "it's-just-a-flesh-wound-rub-some-dirt-on-it-and-you'll-be-fine" school of thought. But diabetes has changed that in some respects.

It has taught me that mercy, grace, and kindness all need to be a part of a mother's toolbox. For the times when Elise fights me at shot time. Or when she's being belligerent due to a high or low BG. So I can just hug her and let her cry when she tells me she hates diabetes and just wants to be a normal kid. These are not "rub-some-dirt-on-it" moments.

But most of all, diabetes has taught me about strength. MY strength. When I just want to take the scale and throw it out the window, and the thought of poking my child one more time makes me want to cry. I dig a little deeper.

On the nights where it seems we're up every hour fending off lows, and I feel like I might throw up from the exhaustion; I just keep going.

During the times that Fred is out of town and it seems that those are the times that everything goes wrong at once, I keep calm and carry on (thanks Laura!). Well, I carry on... I still need to work on the keeping calm part.

So while diabetes is not my favourite auto-immune disease that attacks the beta cells in the islets of Langerhans; I can say that, without a doubt, it has made me a better Mother.

Thank you Chick-fil-a Southlake for the honour. And for giving me leverage in arguments with my children for many years to come. Because what the Mother of the Year says, goes!


One more amazing thing I have to mention about Chick-fil-a Southlake... they have agreed to host another fundraiser for Team Elise! I'll be doing a post with all the info soon!

Wednesday, August 3, 2011

The "what ifs" and "but maybes"

I have a very loud, persistent inner monologue. In fact, it almost never shuts off. Lately, it's been causing me to focus my sights on Mattias.

We're only a few days away from his 11th month-aversary. Which means we're just over 1 month away from him being the age that Elise was when she was diagnosed.

Now LOGICALLY, I know that just because Elise has diabetes, it doesn't mean Mattias will. But I also know it doesn't mean he won't.

And LOGICALLY, I know that the chances of him being diagnosed at the exact same age as Elise was, are minuscule. But I also know that it could happen.

So I have a stream of consciousness, an inner monologue that almost reads like a James Joyce novel. It is peppered with "what ifs" and "but maybes".

"Wow, he seems to be nursing for a long time these last few days, what if he's thirsty because of diabetes?"

"But maybe he is just thirsty because it's so hot out."

"Gee, Mattias has been taking long naps this week. He's also seemed so hungry too. What if I should be paying attention to these symptoms?"

"But maybe he's just going through a growth spurt."

"His BG check came up as 89. What if I'm not catching it at the right time?"

"But maybe I am."

"What if Mattias has diabetes?"

"But maybe he won't ever be diagnosed and all this worry is for nothing."

And so on it goes. The "what ifs" keep me dwelling on the negative. Living in fear that any day could be the day.

The "but maybes" scare me too. Could I be rationalizing it too much? Could it cause me to miss something?

I think I've finally come to the realization that I need to dam that stream of consciousness and shut the inner monologue up.

Worrying will change nothing. Who has ever changed anything by worrying? If Mattias is to get diabetes, then no amount of fretting will change that. And besides, if it never comes to pass, how much of my time and energy was wasted on worry?

Because as Doris Day once sang, "que sera, sera."

It's time to stop being afraid of a future that's not mine to see.

I'll let you know how it goes...

Monday, August 1, 2011

Things Diabetes has taught me this month... July edition

-This one is from last month, but I forgot to include it... Portugal is a carb factor aficionado's paradise! All the packaged foods are labelled with a serving size of 100g, which means the carb factor is ALWAYS right there on the package! So, 100g of chocolate? Amount of carbs in that serving is 61. So, the carb factor is .61! 100g of bread? 47g in that serving, making the carb factor .47! All it really means is one less calculation, but sometimes it's the small things, right?

-After almost 3 years of dealing with D, you'd think we'd have left the rookie mistakes far behind us. Uh... yeah. Not so much. Twice this month I made the mistake of leaving Elise's diabetes bag at home. The first time was the worst, since we were out for dinner. Thankfully I had packed her insulin in the cooler bag, but no diabetes bag meant no syringes. I did find one used syringe in the bottom of the cooler bag. Did I use it? Perhaps I did. Or perhaps I just wished the insulin into her. During dinner, the Dexcom kept showing her BG as dropping; getting as low as 44. With no meter, we had no way of knowing. We figured as long as she was eating, she should be okay. UGH! I hate mistakes like that!


Oh, and somehow the back-up meter sprouted legs and disappeared from the diaper bag. Grr.

-It's been awhile since we've dealt with Elise being sick, and while we didn't forget about the post-illness insulin sensitivity/carb absorption issues, we're having trouble adjusting. The last few days she has needed anywhere from 45-60g of extra carbs just to keep her BG above 100, only to have her BG soar right before dinner. Day 5 post-illness and we're STILL tweaking.


Speaking of illness... poor little Mattias didn't escape getting sick. He started throwing up around 3 am last night (why? Why do these things always happen at night???). I have never seen him so unhappy. If you could pray he feels better soon? He can't really afford to loose any weight.

Plus I'm getting a little tired of the smell of vomit.