Friday, September 28, 2012

Solving for why

I'm a pretty logical person.  I like it when a+b=c.  I run my errands by driving to the furthest point first, then making my way back towards the house.  When I write out my grocery list, it's done in order by aisle. 

Having said all this, I swear I'm fun at parties.

Diabetes, as you well know, is NOT logical.  It is NOT a+b=c.  It's more like a+b=purple.  Or more recently for us:

If a train leaves Chicago travelling east by 100 mph at 6:00 pm, and a monkey has 10 bananas but only eats 5; then what is the tallest free-standing structure in the world?

Answer: Spinal Tap.

Yeah, it makes no sense to me either.

I think in the world of chronic illness, diabetes is the crazy uncle.  You invite him to the party, but you never know what you're going to get.  Sometimes he acts like an a civilized human being; he can carry on an actual conversation, is quite polite and doesn't make a spectacle of himself.

Other times he's dancing naked on the hors d'oeuvres table while doing his (rather passable) rendition of "It's Rainin' Men".  With crazy uncle it's always expect the worst while hoping for the best.  Unfortunately, you can't turf crazy uncle out on his pale, naked hiney because, well... he's family.  And like it or not, he's there for the long haul.

But wouldn't it be nice to know why crazy uncle is sometimes normal and sometimes not?

With diabetes, I don't know why Elise sometimes needs a temp basal after a pod change, and sometimes she doesn't.

I don't know why soccer sometimes runs her low and other times runs her high.

I don't know why she needs an increased temp basal on days she has school.

And I don't know why she can eat the exact same meal, down to the carb count and one day she's in range afterwards and another she's sky high.

But I do know that diabetes in unpredictable and the best answer I have is just to roll with the punches.  I just wish diabetes didn't make it so hard when it comes to solving for why.

Thursday, September 20, 2012

The girl who cried low

I have to confess, bedtime is not one of my favorite times of the day. I love the hours following bedtime, but the frenzied snack time followed by bath time, flossing/brushing teeth, story time, snuggle time... It's all very exhausting. Especially when Fred is out of town and I'm flying solo.

But what I hate is trying to get Elise to fall asleep. There's always one more thing. I finally implemented a saying, "call me if you're low and get up if you've got to go."

And it worked. For awhile. Now I can almost set my watch when Elise is going to say, "I don't feel good!" after I tuck her in. And sometimes she's right. But more often than not, she's fine. Like mid-100s fine. And I'm getting tired of it.

I've patiently explained  the boy who cried wolf story to her a million times. After tonight, make it a million and one.

Obviously, I don't want to ignore her. But I am so tired of bedtime taking an extra hour after I first put her to bed. I actually stay upstairs until she falls asleep so I don't have to repeatedly climb the stairs to answer her calls.

So what to do? The other night I got so frustrated with her I threatened to put the Dexcom back on her. Not one of my finer parenting moments, but I just don't know how to handle this.

I don't want her to feel like she can't tell me if she's feeling low, but she need to learn she can't use it as a way to stall bedtime. 

Does anybody have some tried and true method?  Come on... help a tired, pregnant Mama out.

Monday, September 17, 2012

And now you know... the REST of the story

Awhile back I posted a snippet about our awful experience with the TSA when we flew out of DFW airport.  I've been wanting to finish the story, but every time I tried to start, I'd get so freaking mad all over again.  

I figured it's about time to commit it to paper, lest my pregnant brain decides to get even more forgetful.  The story may run a little long, but here it is...

It all started as soon as we approached the security checkpoint.  Like any good (read: paranoid) person, I had printed out pages from the TSA website pertaining to anything related to kids, diabetes and travellers with disabilities.  I was fairly confident I knew what I could request from the TSA, and what I could expect.

I explained to the first woman that my daughter had type 1, and that I was okay with most of her supplies going through the scanner, but I'd prefer it if her pump didn't, and I wanted a visual inspection done of her pump supplies and PDM.  Which should have been okay, according to what is printed on their website:

"If you are concerned or uncomfortable about going through the walk-through metal detector with your insulin pump, notify the Security Officer that you are wearing an insulin pump and would like a full-body pat-down and a visual inspection of your pump instead."

My request was greeted with a look that suggested I had asked if I could run through the scanner naked and she replied she would have to ask a supervisor.  Meanwhile I put everything (except her extra pods and PDM) on the belt, while Fred and Mattias walked through the scanner, leaving Elise and I on the unsecured side.

We waited for about 5 minutes, then were rudely told to stand back ("no, over there... move back.  More.  Even more. You need to be out of the way").  I asked what the hold-up was and was told that they had to locate someone who could tell them what to do.  Meanwhile, Elise was getting upset and started to cry.

Let me interject that I had been nothing but calm, but Elise is just a very sensitive kid and can pick up on nasty vibes.  She told me if she could have Pinky (her stuffed bear), she would be okay.  Unfortunately, Pinky had already been scanned and was sitting on the secure side.  And they wouldn't give a crying 4 year old her stuffed bear back.  Nice.

Another agent (a guy this time), came over and asked me what the problem was.  I repeated my request, telling him he could see the information I had printed out from his agency's very own website, but he declined; again asking me what the problem was.

I told him I wasn't comfortable with putting what amounted to my daughters life support through the scanner and I wanted a visual inspection. He pointed at the PDM and said that it was fine to go through the scanner.  He seemed to be under the misinformed impression that it was a meter.  I told him that the PDM controlled the pump and if something happened to it, the pump itself was useless. He had trouble grasping the concept and walked back to the secure area.

So far me and my pregnant butt had been sitting on the cold, hard floor with a weeping child for about 20 minutes.  Elise starts wailing that she doesn't feel good, which is a sign that she may be low.  I wave at Fred to get his attention and tell him I need her diabetes back, which had already been scanned.  The guy tells Fred that he can't give me the bag, because it's already been cleared.  That's right, he was trying to deny my daughter the right to test her blood sugar.

Fred argues with him and tells the guy that Elise might be low and she HAS to check her blood sugar.  To which the guy replies, " she has to check right now???"

Fred says yes, grabs the bag and hands it over the partition to me.  It turns out she was in the low 200s, most likely from the stress, so I correct her and we continue to wait.

About 25-30 minutes after we first approached the security checkpoint, Elise and I were allowed back to the secure area, but we had to continue to wait while they swabbed EVERYTHING that was in our bags.  At least Fred and I were together.  By that time a suit had arrived with a giant binder and proceeded to try and figure out what to do with us.

It turns out the problem is that they can't pat down a child.  Ergo, they couldn't do a proper inspection on my very threatening 4 year old child with type 1 diabetes.  We had to wait another 30 minutes, and by that time we had missed our flight. 

The whole experience was awful and scared Elise so much that when it came time to come home, she started crying when it was time to go through security again.  Except at SFO, we had no problems at all (even though I requested the visual inspection again - yeah, I'm a slow learner), and the woman I dealt with told me that what they did at DFW was wrong.  She also told me that at SFO, it's a privately contracted company that handles security, while DFW it's the TSA.  Interesting, dontcha think?

Since this is getting rather long, I'm going to sum up what has me so pissed off (other than the obvious) in bullet points:
  • Don't have something written on your website, then ignore it.  And when someone tries to point it out to you, don't tell them (something to the effect of) "we don't have to follow those guidelines".
  • Refusing to give a child her teddy bear makes you a jerk.  And watching her stony-faced while she weeps for 45 minutes makes you a colossal jerk.
  • Don't try to tell me what a PDM is for. I think I know.
  • I think part of the problem was that the Omnipod was unlike any pump they had ever seen.  It would be nice it they were aware of all pump types.
  • Use the brain you were given to assess the situation.  One-size-fits-all rules don't work.  If a pump-wearing 4 year old with type 1 diabetes is considered a threat, then we are all in trouble.
Yes, I realize that I could have made everything easier by just letting her pump go through the scanner.  But I was not comfortable with that option, so I tried to follow the TSA's OWN GUIDELINES and look what happened.  Why was it okay at SFO and such a problem at DFW?

I have yet to file a complaint with the TSA, but it's coming.  If nothing else, another family, CWD or PWD won't have to deal with the stupidity that we did.

Thursday, September 13, 2012

The not-so-friendly way to say hello

as I've previously mentioned, pay no attention to the date... not sure how or why it's so far off the actual date

I was just remarking to Fred a little while ago how we are a few weeks shy of 4 years of dealing with diabetes, and we have yet to see the infamous "HI" or "LO" mocking us from Elise's meter.

Rather, we HAD. You know where this is going, right?

Due to equal parts pump failure and insulin spoilage, we saw the suckastic "HI" during our trip to SF. We were at a back-to-school party that was being put on by our friend's church. There was food, crafts, games and one very unhappy little girl who had to endure a shot (that was useless due to the insulin being bad) and a pump change (that was almost useless because it hadn't donned on her exhausted Mom that the insulin might be bad and she almost filled up the new pump with the bad insulin. Which would have led to the third pump change in as many days. Thanks to super Dad Fred for catching it).

The whole mess caused me to sit in a corner after the pump change and have my very own pity party, complete with tears.  The entire day had been a battle; we had mid-300s in the morning, followed by a scary 34 right after lunch, and then numbers that refused to be touched until after the pump change.

My friend sat with me as I cried it out and commented on how exhausting it must be for us dealing with the roller coaster of numbers (she had been with us most of the day and saw how quickly and terribly the 34 had hit Elise). But I was more crying for my daughter, and how worn out she must have felt. And how THIS. IS. HER. LIFE.

I think instead of saying "HI", meters should instead say something more apropos... Like FUBAR.

Yeah, it's not very nice, but neither is a word that masquerades as a friendly greeting.

Tuesday, September 11, 2012

Team Elise news

Team Elise is getting all geared up to walk in this year's JDRF Walk to Cure Diabetes, and if you live in the area and want to walk, there is still time (as in one more day) to sign up, get a cute shirt and show support for a great cause!  You can still sign up after Wednesday, you just won't get one of the super fabulous Team Elise shirts; coveted by many.

If you don't live nearby (or you do and are unable to walk), and want to help support Team Elise, you can do that too!  How?

I'm glad you asked!  Just click here to be taken to the Team Elise website.  Then you can click on "donate" and it will take you to the Team Elise JDRF page where you can either donate or sign up to walk.

Another bit o' news for those of you who live in the area... Team Elise is having another fund raiser.  This time at a yummy frozen yogurt place!  The fundraiser is taking place all day today and tomorrow (Sept. 11 &12), and we will be there both nights from 6-8 pm. For more information (address, etc), click here to be taken to the Team Elise events page.   And thank you Cassie's Frozen Yogurt!

Whew... got all that?  Team Elise. Sign-up. Walk. Shirt. Donate. Frozen Yogurt. 


Monday, September 10, 2012

Dear Meri

Like others who have written posts for Meri and her family, this has been turning over in my brain for days now.  But the "putting pen to paper" part has been so much harder.  Funny I can do.  Amusing? Not so hard.  It's the words that mean the most that are the hardest to say.

I think I'm afraid of saying the wrong thing.  Or saying too much.  Or not enough. But I've been told the most important thing is to just say it, so here goes...

My dear, sweet Meri.  Of course there are no words for the sorrow I am sure you and your precious boys are feeling right now.  I cannot even fully describe the hurt in my heart, so I cannot imagine your pain.  I am so sorry for the loss of your wonderful Ryan.

I only met him once, so I count myself blessed for having known him.  Almost 3 years ago, you invited our family over for dinner at your in-laws when we were in the SF area.  I can still remember the amazing prime rib Ryan whipped up.  But even more, I remember the warmth and the love that exuded from everyone there.  There was calm amidst the chaos of feeding 4 type 1 diabetics and I was just so in awe of how everyone worked together and helped each other.  I learned so much from you and your family that night, and I am a better D-mama for it.

I still remember Ryan's presence from that night too.  Not the presence of someone who is loud and commands attention; but the quiet strength and joyful spirit of a man who has everything he has ever wanted.  His post on Meri's blog (in which the phrase "who the hells needs grammar" almost made me pee my pants from laughing so hard), is one of the sweetest things I've ever read.  Like I said, I only met him once, but I will miss him.

Meri, you are so loved.  I hope you know that.  I think if it were possible, the entire DOC would have flown out to be there on Saturday.  And I hope you know that you and your boys are in my thoughts and prayers constantly.

Love you my friend,

Please, if you have the means to give to this family who has not only lost a husband and father, but the sole income provider, please click on this link and give what you can.  And keep them in your prayers.

Friday, September 7, 2012

THIS guy...

... was born two years ago today.  To say I love him is like saying Texas can be a little warm in the summer.  In other words, a HUGE understatement.  There is something so adorable, so stinkin' edible about my little man.  He is both sweet and a whirling dirvish of crazy at the same time and I wouldn't have him any other way.

Happy Birthday sweet, adorable, hilarious Mattias.  Thank you for making me laugh every day.

Thursday, September 6, 2012

Just another day

It's been about 4 years since this picture was taken.  It has also been 4 years since Elise was diagnosed with type 1 diabetes.  I went back and forth on what we should do to acknowledge this day.

In the end, with so much celebrating going on (Elise's birthday, Mattias's birthday, first day of school), it was just another day.

Much like how that day started out 4 years ago... just another day. 

This year it felt right to treat it as such.

But I could not let this day pass without acknowledging the 4 years my strong, amazing daughter has lived with diabetes.  And what better way than with the following story:

I received a call from her pre-school teacher the afternoon after the first day was over.  She wanted to tell me how when she was going over the daily schedule, she asked the kids what they do after they have bathroom time and wash their hands.  All the kids answer, "snack".

What does my sweet daughter pipe up with? This...

"I go to the kitchen with Ms. A so she can help me check my blood sugar.  Then she boluses me so I can eat my snack."

She then proceeds to answer the kids' questions about diabetes, finger pokes, and her pump; even showing off her Omnipod to the class. 

Her teacher was impressed.  I was amazed.  My daughter?  She took it all in stride.

And I couldn't be more proud.  We've all come a long way.

Especially her.

Wednesday, September 5, 2012

The first of the last

Today was Elise's first day of her last year of pre-school.  I am so thankful for the amazing pre-school she attends, and that the only prep I needed to do with her teacher (which is the same one from last year) was the teacher emailing me a few days before school started saying, "Anything new I need to know about?"

My answer?  "Nope!  See you Wednesday!"

I know... I am spoiled.  Ms. A jumped right back into things like she had never stopped.

Since Elise's birthday was yesterday, and Mattias's is Friday (it was his first day too!); I sent cupcakes to school for their classes.  Elise's BG at snack time? 336.  Did she eat her cupcake anyway?  You bet.

Numbers-wise it wasn't the best first day, but both my kids came home happy and excited about school.  I call that a win.

Come on... how cute are they?

Tuesday, September 4, 2012

THIS girl...

... was born 5 years ago today.  She was and still is one of the most beautiful things (on the inside AND out) I have ever laid eyes on.

Happy Birthday sweet Elise!  We love you and you continue to amaze me every day.

Monday, September 3, 2012

Things I learned from Diabetes this month... August edition

-It amazes me how incompetent, poorly trained, and ridiculous the TSA are.  I mean, I have heard stories, but never expected it to happen to us.  The story is still forthcoming and it makes me see red each time I think about writing it.  If anybody knows the right forum to file a complaint, I'd like to know (I know it's out there, I just haven't had the time to research it).  Meanwhile, I think I met a bunch of monkeys at the SF Zoo that could do a better job than the agents we interacted with that day.  Oops, excuse me... that's an insult to the monkeys.

-After almost 4 years, diabetes can still make me cry.  I have an upcoming post about that too, but UGH, I had forgotten how angry and sad it makes me sometimes.

-Travel with D just plain sucks. I knew this, but our SF trip was a reminder.  Don't let this observation discourage you, but prepare you for the fact that even if right before you leave you are having the most amazing run of number you've ever seen, travelling will (more than likely) promptly screw that up.

-We stayed a few nights in a hotel when we road-tripped down to Santa Cruz and unfortunately did not have a fridge in our room.  It was a nuisance and a complete (stupid) oversight on my part.  Never again... when travelling with diabetes (and kids) a fridge is a MUST!

-THIS is what 10g cho of cotton candy looks like.  Also, the pure joy of my little girl enjoying it.

-Diabetes sucks, but cancer sucks more.  I know that by now most of you have heard about my sweet friend Meri losing her best friend and beloved husband to brain cancer at the age of 40 on Sunday.  My heart is breaking for Meri and her boys.  I only had the chance to meet Ryan once, but even that one evening was enough for me to know that I was in the presence of a man who loved greatly and was greatly loved by his family.  And Meri has been an amazing source of encouragement and friendship to me.  Please, if you have the means to give to this family who has not only lost a husband and father, but the sole income provider, please click on this link and give what you can.  And keep them in your prayers.