Why diabetes sucks today... vol. 1

See all those pods? They are all the pods we've gone through since last Wednesday. I took that picture last night, and in that time period, we should have only gone through two pods.

TWO.

If I can still count correctly, there are eight pods in that picture. We went through four of them in one night.

Two fell off with minimal effort.

One wouldn't fill with insulin.

And one just never worked at all.  Elise's BG went from 245 to 475 during the three hours she wore it, all the while receiving almost an extra unit of insulin AND running an 80% temp basal.

On that night, Elise went through three pod changes and two shots.  In a span of six hours.  She's my rockstar.

(the reason some of the pods are written on is so I can remember what the issue was with that particular pod)

All the pods have been called in.  Omnipod is wonderful to deal with in that respect.

I get it. Products fail, crap happens.

It just makes your head explode when it happens to your child.

And THAT... is why diabetes sucks today.  

Ain't no cure for these summertime blues

It came in the mail the other day.  Eight or so shiny pages chock full of fun.  It was the information guide to all the summer camps offered by our city.

I actually thought it was something else; another brochure our city puts out about upcoming events, adult sports leagues, library offerings and the like.

When I realized what it was, those old familiar feelings started bubbling to the surface.  Sadness. Feeling like an outsider.  Loneliness. 

Anger.

Such ferocious anger at this disease that works so hard to leave my daughter out of all the things most people take for granted.  Like summer camp.

Elise will be going to summer camp.  The one offered by her pre-school.  Her regular teacher will be there and is only too happy to have Elise in her class again.  I love that woman.

The problem?  Next year she's too old for the pre-school's camp.

But she's too young for me to let her go the the city-offered ones.

And they're camps I know she would love; gymnastics, soccer, and even a lego camp.  My girl can build the crap out of lego sets.

And I know most of these camps are run by teenagers.  Don't get me wrong.  I love teenagers.  I used to BE a teenager (and probably still act like one some days).  But most lack the maturity to deal with t1.  I can still remember when I put Elise in skating lessons when she was 3.  At her first class, I tried to give her 15-ish year old instructor the D run-down and she gave me this look like I had two heads.  She shrugged her shoulders, gave me a flippant, "o-kay" and skated off.

So I spent the 45 minutes every class, staring intently through the window into the rink, trying to determine if Elise was going low.  This was obviously before the new G4 dex, so any time I felt unsure, I had to haul 2-month old Mattias in his car seat with me into the freezing rink, get Elise's attention, and wait for her to painstakingly make her way to the door so I could check her dex. The teacher would never even acknowledge me.

And now between nursing and naps for my two littlest littles, there is no way for me to "camp out" at Elise's camp, in case there's a problem.  The same issue rules out any D day camps; as they're all really far away from us.

So I sit here; feeling angry in a way I haven't been in a very long time.  Age, plus a pump and the dex, have all made life a little bit easier and inclusive.

I guess this is just one more thing that will have to wait.

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

-Even though life with D is getting easier now that Elise is older, it still has it's huge pain-in-the-ass moments.  We're having our master bathroom redone, and as you can imagine, it gets very loud at times.  The first day, Lucas was having difficulties falling and staying asleep, and was getting a little frantic because he hadn't slept all morning.  My solution was to put the kids in the car and go for a drive, except that Elise's BG would NOT stay over 90.  She woke up that morning at 101, started showing slightly down on the CGM as soon as she started eating, and had her breakfast "spike" at 85.  I was too afraid to put her in the minivan, where she sits in the "way back".  I mean, really diabetes?  I can't even go for a drive?

-While I love the DOC, nothing is better than hanging with D-peeps in the flesh.  We have a great support group in the area, and while I don't get to go to a lot of events, I always come back feeling "filled up" when I do.  If you live in the DFW area and are not a part of this incredible group of people, send me an email through the "contact me" link on this blog and I can forward you the information.

-Sometimes Elise likes to test my BG when she's feeling a bit bad about diabetes.  It's amazing how a simple finger poke can chase her blues away.  A few days ago, I had been sneaking skittles and starburst from the kids' Easter stash on the sly, when she wanted to check my BG.  The result?  I came in at 119 and she beat me at 117.  The lesson? Don't sneak sugary candy if there's a chance of a surprise BG test.

-I think I have found the hardest restaurant type to bolus for.  Forget pizza.  Forget pasta.  Churrascarias take top billing.  If you are unfamiliar with them, it's a Brazilian restaurant where they come around to your table with all different types of meats of skewers.  You have a card beside your plate that says "Sim" (yes) on one side, and "não" (no) on the other.  As long as it says sim, they keep on bringing you meat.  They also have a salad bar with all sorts of goodies.  We went there for Easter dinner and what makes it difficult is there is no telling on how much your kid will eat and when they will stop.  What I had to do was just start with a small bolus, and then keep bolusing her as she ate more.  I think I bolused her 5 times... thank goodness for pumps!  Plus it's really hard to keep up a conversation AND mentally add up carbs that are unbolsed for.  Needless to say, I was exhausted after that meal; due to a meat coma and math fatigue!

Happy Easter!

School Daze

A while back I asked for advice on some school issues, and I was so thankful to everyone who replied.  Not only were your comments insightful, they left me feeling like I had some focus on the matter.

I finally did call up each school to try and set up an appointment, only the school we are not zoned for (which is the closer school) wouldn't even talk to me unless I called the district first.  Even then, they wouldn't know if they could enroll Elise until 1 week before school started.  Ummmm, no.  That's a deal breaker!

So we set up an appointment for the school we are zoned for, and took Elise.  I was a little wigged out by how secure the school is.  I mean, I understand (and am very saddened by) the need for it. But it makes me a little antsy being locked away from my kid that way.  Is it just me?

Anyway, we met with the nurse and the principal and were so impressed by what we saw.  We spent two hours asking questions, and felt pretty good about their answers.  The nurse is very business-like (but had great rapport with Elise), and is very, very pro-504 plan.  In fact, she said they had a T1 show up last year (he's no longer there) without one and they very quickly sat down with the parents to get one in place.

And the part that has us feeling pretty good about this being the school for Elise?  The nurse's brother is a type 1, who was dx'd at the age of 3.  He now lives with her and she helps care for him.

All through Elise's short schooling career, I feel like everything has just fallen into place; her first pre-school teacher had type 2. Her second teacher (who she also has for her last year of pre-school), has been amazing and does such a great job of taking care of her.  Our pre-school has worked with us to make sure we feel comfortable and Elise is safe.

And now the nurse in her new school has t1 experience.  Really, what more could I want?

I do have a few more questions as I start thinking about Elise's 504:

• For those of you who pod, where do you keep the PDM?
• Is it normal that you cannot just tell the nurse to make a change on the fly? Like cancelling a temp basal that you had started before your child left for school that morning?  It sounded like anything the nurse does (aside from straight-up bolusing, or correcting using the pumps suggestions), has to be approved by the doctor.
• Can you put into the 504 that you have the final say in daily changes and the nurse doesn't have to contact the doctor for those?

If there's anything else you think is important, please let me know. I do plan on looking at sample 504s, but I'd like to know provisions that you guys think are the MOST important. 

D-Feast Fridays: Makin' Bacon

Bacon.  It's yummy, but let's face it, a total pain to make.  I hate the cleaning up that comes with cooking bacon.  Or the painful burns if you get hit by some grease.  Even the lingering bacon smell wears on me after 5 hours.  That's why I love this method of makin' bacon!

Bacon in the oven... it's easy, a breeze to clean up, and I've found it doesn't stink up my house for hours afterwards.  Here's how you do it:

Line a cookie sheet with foil.  Arrange your bacon on the sheet like so:

Set your oven to 375 degrees F.  No need to pre-heat, I turn the oven on and put the cookie sheet in at the same time.  Cook for about 15 minutes, depending on how crisp you like it (and how hot your oven cooks).  My advice is to keep your eye on it after about 12 minutes. 

Bacon!  After you remove the bacon, let the cookie sheet sit for a bit until the grease solidifys a bit.  Then you just crumple up the foil and throw it away... so easy!

Or you can keep the foil and you'll be left with some nice bacon art... I think I'll call this one "Ghosts of Bacon Past".

He likes to dip his bacon in Nutella

As does she... maybe they're onto somthing?

Now go... enjoy some bacon. You know you want to.

Carb factors and why they are awesome

My name is Joanne and I weigh my daughter's food.

Pretty much everything she eats graces my kitchen scale.  And I'm okay with it.

It all started when she was diagnosed at the age of 12 months.  We quickly discovered that even 3g of carbs would raise her BG by 70-100.  Even these days when treating a low, we use 6g if we're dealing with anything 50 and above.  Just the other day, she was 53 and I gave her 6g.  A mere 10 minutes later, she was 134.

I guess she's just really sensitive to carbs. 

And I like weighing because it's the most precise way of counting carbs.  It also takes one thing out of the equation when you wind up with a wack-a-doo number after eating.  At least you know you counted the carbs correctly.

I love carb factors because they make it so easy to figure out carbs.  If you've never heard of carb factors before, read this post I did on them.  I think it's a pretty good explanation.

But my favourite thing about carb factors?  Is they make it easy to figure out the carbs of almost anything.  Even if you don't have the nutritional information, you can use a generic carb factor and come pretty darn close. 

For example, bread for the most part has a carb factor of between .47 and .59.  When eating out at a restaurant, I use a generic carb factor of .5 for that yummy, warm, soft bread that comes at the start of the meal, and it usually turns out fine.

Or pasta sauces are usually between .07 and .12 (hint: the more meat, the lower the carb factor).

Mashed potatoes generally run between .18 and .22.

Brown rice? .23.

Vanilla ice cream?  .23 to .25.

Because I have a good head for numbers, I can remember the carb factor for almost anything Elise has ever eaten.  It really has made eating out so much easier for us.  I can barely remember my own name, but I do know that nuggets at CFA have a carb factor of .1.

The other day I was making a cold oriental noodle salad dish for dinner.  It had noodles, chicken, carrots edamame, and a "dressing".  I must have lost my brain somewhere that day, because I threw everything in a bowl without weighing and figuring out the dish's carb factor.  Oops.

I had never made it before, but I had made pasta salad lots of times, and they all have noodles, veggies and meat, so I decided to use the carb factor for one of my pasta salads (.15 if you're wondering).

The result?  She was 104 before dinner, and 124 about 3 1/2 hours later.  I call that, "rockin' the casbah".

And that's the main reason I weigh and use carb factors.  D throws so many other curves at us, I like to try and control what I can.  Sure sometimes we forget the scale.  And I always eyeball and SWAG the cupcakes at a birthday party, but I think weighing Elise's food has a lot to do with why her A1Cs are in the low 6s.

I know that everyone does D differently, and that most of you would never be seen in public with a scale, but in the infamous words of Yo Gabba Gabba, "Try it... you'll like it!"

I really need to start watching better TV shows.

Not mine

It is usually with great jealousy that I read other people's blog posts about "diabetes in the wild" encounters.  For some reason, it just never happens for us.  My husband would tell you that it's probably a good thing, because I tend to act like a puppy when they do.  Meaning I get really stupidly excited and tend to pee myself.

Just joking about that last part.

The other day, I had to take Elise to a dermatology appointment.  It seems she has inherited my penchant for weird skin things.  Lucky girl.

When The NP walked into the exam room, she was reading Elise's chart.  We exchanged hellos and she sat down, scooted up really close to Elise and said, "can I show you something?"

As she reached into her bra (something I realize that would alarm most people, but as someone well ingrained in d-culture, I knew what was coming), I smiled.  She pulled out a pump and said, "I have diabetes too."  She then showed Elise the site on her stomach.

Elise showed the NP her pod, and then we got down to business.  It was then that something very wonderful happened.

The NP asked Elise about "bad diabetes days" and went on to tell her that she sometimes feels sorry for herself for having diabetes.  She held out her hands, palms up and fingers spread.  She added, "I hate having to poke holes in my fingers and seeing those little dots everywhere."

Elise held out her own hands, mimicking the NP.  At that moment I felt very much like an intruder.  An outsider.  It was not unlike peering in on a secret handshake to a very exclusive club.

And it was a very poignant reminder that it's her disease, and not mine.

Intellectually, I know this.  But for those of us with kiddos diagnosed very young, for awhile, it is your diabetes too.  No, you do not have to endure the BG checks, the shots, pump changes, the lows or the highs... but you are there for every single number and sometimes you swear you feel that 45 too.

I watched them, one a stranger and the other my sweet 5-year old daughter, as they shared a connection that I can never be a part of. 

Elise has been struggling with diabetes lately.  Laments of feeling alone, like she's the only one that has to poke her fingers and wear a pump.  Crying because she just wants to be like everyone else.  Hating that a high BG won't let her eat dinner, telling everyone to go ahead and eat without her.  I can't even tell her I understand, because she knows that I don't.

I am so thankful to PWD who take the time to reach out to my child, letting her know that she is not alone.  To reassure her that she is going to be okay.  To let her know that she will have a wonderful life, despite diabetes; and it may even lead her down some amazing pathways, if she lets it.

We have a winner!

What a wonderful day to pick a winner!  It's around 80 degrees out and it just so  happens to be Elise's half birthday (not that we celebrate those, but it just blows my mind to know that).

My lovely assistant.  She made the numbers
and did the drawing.  She told me the popsicle
stick is a 1... for type 1 diabetes

Rummaging through to draw our winner...

And the winner is...

Comment #2, Colleen!  Congrats Colleen, just email me your address (through the contact me link on my sidebar), and we'll be sending you those yummy bars asap.  I'll try to send a little sunshine your way too.

Things diabetes has taught me this month... February edition

-Pod changes are best done early in the day for us.  We have a tough time finding what works best for us to combat those post-pod change highs. We've done it all pre-change bolus, post-change bolus, temp basals of all varieties... And combinations of all of the above. What usually happens is all that extra insulin catches up to Elise about 8 hours later. If we change the pod later in the day, the lows hit in the middle of the night. Not good.

-I hate pretty much all commercials related to diabetes. Especially now that Elise is paying attention (I don't normally watch daytime TV when the kids are not at school, but I am guilty of turning it on when I nurse Lucas). The one that really gets me is for "diabetic nerve pain". All of a sudden the questions tumbled out:

• What is diabetic nerve pain?
• Why does he have it?
• Can I get it?
• Why is it bad?
• How can he have diabetes? He's not a kid!

How do you explain to a 5 year old the complications of diabetes? And should you? She doesn't really even understand. Ugh.

-Each birth after Elise's dx has given me a bit of a glimpse of what it must be like to have twins. Now, I'm not saying I know what it's like to have twins like those my-cat-has-diabetes-so-I-get-it people, but think about it; a newborn needs constant care. So does diabetes. A newborn is exhausting. So is diabetes. A newborn keeps you up at all hours of the night. So does diabetes. It is so tough when both are demanding my attention at the same time.

-Keeping your face too close to your child's foot while doing a BG check in the middle of the night might just result in a kick in the face. Consider yourself warned.

Just a reminder, if you haven't entered my giveaway yet... You still have a few more days to do so. Just click here to read and leave your comment.

And a few of you were interested in hearing Lucas's birth story. I've written it on my other blog here if you want to read it.

Is it really March already?