Introducing Lucy...

Lucy is my middle daughter. 12 years old, smart as a whip, gentle, kind, funny as all get-out, smiley faced, cheerful, sarcastic, dancer in the kitchen and singer of Broadway show tunes at any given time. That about sums it up. She is also the younger sister of Maddie, who has autism and the older sister of Grace, who has Type 1. I asked her a few weeks ago to just let me know what that was like for her, being the middle of the 'sandwich' so to speak. I asked her to speak whatever was in her heart and whatever she felt. Here are her thoughts. If you care to check her out, she also blogs, at the uber-fabulous www.lucyplease.blogspot.com


And so, here's Lucy...

So hi there! My name is Lucy and you might have heard about me before, you might have not. If you don’t know who I am, I am the sister of Grace and Maddie. As all of you know, Gracie has Type 1, while Maddie has autism. And me? I am a typical teen that you could find anywhere. I like to read, draw, sew, hang out with friends and my parents (not very normal, but I love them too much!), and blog. I have a blog named LucyPlease which talks about fashion, and you can check it out here. But I am not just here to talk about me, I am here just to talk about my sisters. First, let’s start off with the one and only, Grace.

Grace is a amazing person, inside and out. She will talk to you about everything and anything and is a smart as me! But sometimes her diabetes can be frustrating for me and the family. It can be hard for me sometimes because when we are out in places, people stare and think that we are giving her some kind of ‘bad’ thing in her body. And sometimes I can’t deal with stares. They just don’t know how it is and what it is like for a little girl to have diabetes and manage it around the clock, 24/7. I recently was in health class and we were talking about diseases and diabetes came up in the midst. So, like the outgoing person I am, I decided to say something about her. I told everyone that my little sister had Type 1 Diabetes and that she on the OmniPod. And what did I get from the group? Blank stares. They looked at me if I was someone they had never met. They thought it was the weirdest thing ever that someone I knew had diabetes. Also, just having a sister with diabetes. It breaks me sometimes to see her struggle and cry about how she doesn’t want diabetes to exist and how so hard it is. I don’t have this, but I know how it feels. It limits you from so many things in life. Like going swimming, playing outside, eating, drinking certain liquids, and doing all of the fun things we all experienced as a child. She has to come in and check herself before she goes somewhere and has to dose herself for certain foods. Sometimes, I wanna just give her a long hug and tell her that everything will be okay and her diabetes will get better. I wish she didn’t have to deal with it every day after one another. Gracie is one of the most outgoing kids with her diabetes that I have ever met. She is not afraid to tell people about it and share what she really thinks about diabetes.

And Maddie on the other hand, is so funny and smart, I don’t even know where to start. Autism can be hard on everyone sometimes, but it always sometimes can comes out good in the end. Maddie loves Broadway musicals, acting, singing, dancing, watching and collecting videos, and Cheez-its! Yummy! But, it isn’t always ‘happy happy, joy joy’ in here. People stare at her, make fun of her, and just laugh at her sometimes if she says something in school. Me? I have told them to stop staring and laughing, but being the immature teens they are, they won’t. Maddie doesn’t notice who stares at her, but I do. Well of course I do, I am her sister for crying out loud! It’s very hard for me sometimes because people don’t know her, and they just judge her on how she looks and acts, which hurts me. People don’t get autism. They just think it is something to make fun of and say she is so weird, when really, it’s just Maddie being Maddie in life. But my friends respect Maddie for who she is, says hi to her in the hallways, and always talk to her when she is feeling down. They are really true friends. It’s also hard for me because when she has a tantrum or gets nervous, everyone always has to whisper to their friends or tell people about it and stare. It’s always about the staring with autism, because people think they are weird and not normal. So, I just have to help, because that is really the best thing you can do in this kid of situation. Overall, Maddie is by far the best older sister anyone can have, even if I can’t talk to her about boys, fashion, or anything else you can talk to your older sisters about.

And now you can meet me! My name is Lucy and I am a regular and normal teen,who enjoys many things. Some of my hobbies include baking, reading, drawing, sewing, writing, blogging (oh yeah, because it is awesome), and Glee! If any of you watch Glee out there, it is by far the best show ever. I also love acting and singing in front of people and at places. Right now I am in concert choir, chorus, orchestra, the play, and many other things. So you could say that I am juggling a lot of things, but I like when I juggle things, because I know I am involved somehow! Some of my favorite singers include The Beatles, Adele, Florence and the Machine, Lea Michele and Cory Monteith (their voices together are like angels singing in the day), and The Killers. my attitude is always positive and people at school say I should be a cheerleader because I have so much pep in my step! Haha. I love fashion and drawing, so that is what my blog is about. Right now, I have about 65 followers, but there is always room for one more! And make sure you follow this blog, because it is amazing. Well, that is all for me now. Hopefully I made someone smile, cry, laugh, or do all of them while reading this post. So, I will talk to you guys later! BYE!


Lucy :)

She makes me mighty proud. Thanks for your post today Lucy!

SELF Magazine

The ever fabulous Kelly Kunik over at Diabetesaliciousness was featured in the April SELF Magazine under the 'Be SELFless' section they have. SELF magazine wrote about how she empowers others with diabetes and her uber-fabulous blog and the DOC (shout out to all of you!)

I know Kelly has major concerns about what SELF did with the quotes and information she supplied to them and questions that she answered for them, and what SELF magazine staffers did with what she wrote. They chopped up her quotes. This little itty bitty section was more than 3 pages of back and forth emails between SELF and Kelly.

You can find Kelly's take on it here, in her blogpost 'SELFless.'

She asked me a while back for the picture of her and Grace at the 2010 JDRF Walk in Philly. It's a great photo of Kelly and Grace on the Art Museum steps in Philadelphia. 8,000 walkers. It was quite a sight. Kelly, Grace, Grace's sister Lucy and myself walked around the river and the Art Museum, with other people affected by diabetes. We laughed, strolled and waited in long lines for the potty. Talk about community!

On page 23, in the bottom left hand corner, you can find Kelly and what she is doing to empower other people with diabetes. She fights diabetes myths, advocates for others with Type 1, shares her story as a person living with Type 1 for over 30 years and flips her bitch-switch when needed! All of that, and also a dear, dear beloved friend who is such a support to Grace and to me.

Kelly makes a difference in our DOC every day - through her blog, her Twitter messages and her comments left on posts throughout the DOC.

It's an honor Kelly that you chose Grace for your picture for this wonderful message.
You truly DO empower others with diabetes.

Go check out SELF magazine. April issue. Page 23.

Oh, and then go and  tell Kelly how much you LOVE Kim Kardashian on the cover (NOT), cause Kelly's got a serious case of the 'I don't get it's.'
It was God, having a sense of humor with Kelly in this issue of SELF, seriously.

Watch this. Wait for it, at the end.
That, my friends, is why I love her so.


24/7 with K2 from thebetes now on Vimeo.

Getting Lost, then Getting Found

I needed a life preserver, honest.
I was so very lost in the land of basals and correction factors and carb ratios.
Ever get lost within it all?
To where, if you look at one more number and try to figure out where it all went bust, you think you are gonna bust.
That's where I was after The Perfect Storm and for the last week.
Great endo appointment. Amazing on many levels for self-realization.
But not so much for getting those basal rates corrected and figuring out Grace's correction factor.
Not able to figure it out.
Not for lack of trying. It was just that trying, you see, was getting me nowhere.
Nowhere, as in mixed up crazy numbers, high then low and not seeing the forest for the trees.

So, off I went to see Gary.
And I literally looked at him and said,
"I need help, I am really lost. I don't understand what's going on and I really would like to understand."
And he helped me understand.

He printed out a month of numbers and we looked at them.
He printed out the graph of her patterns and we analyzed them.
He drew me a line of how basal patterns run in kids her age.
It didn't look like my 'two-peak-like-an-M' line that I had for her, not at all.
He gave me percentages of lows, highs and in-range for each segment of her day.
We said 'Yes!' to some things and 'Wow!' and 'Whoa!' to others.
We fixed, we changed, we altered the schema of basals.
We figured out true correction factors from subtracting ending BGLs from the original high and the correction bolus given.
We changed correction factors, cause really, that wasn't the problem after all.
The basals were tanking her at times, then shooting her high at other times.
We changed I:C ratios based on after meal numbers.

It looked like this when we were done:

Graph of BGLs, with %s of lows, highs and in-range numbers.
New basals underneath and basal tests to do.

Notebook with my simplified notes.
Line graph is a typical 24 hour basal pattern for kids her age.

Ever get lost when you are driving, then all of a sudden you ask someone for directions and instead of just verbally giving them to you, they motion to you and say "Follow me," jump into their car and they lead you out and onto your way again?

It felt like that.

The Perfect Storm

I created one this week. And it happened while Grace was at school.

You see, it's testing week this week at school, our state test - the PSSAs. Reading, Writing, Math, you name it, we test it. And they are long. And kids sit for 2 hours at a stretch. And they are stressful, even though I plead with my kids to just 'try their very best and let the chips fall where they may' - they don't quite understand that last part, so I just stick with 'try your best, that's all I ask.'
And Grace is in 3rd grade, so she gets to start the tests this year.
Can I get a Yeah!??? from the crowd?
Didn't think so.

Every day the class would have their snack at 10 am. Grace was SO responsible, she kept her OmniPod PDM with her in class (it usually resides at the nurse's office throughout the day and she stops by to check and dose with some limited supervision). She checked when we asked her to, before snack, and would dose herself for her snack. Normally a 100 calorie pack of something. She was thrilled to do it all by herself and we praised her and applauded such responsibility. She beamed with pride.

Monday comes and we see this:
107 - wake up
220 - 10 am check
95 - lunch time

Tuesday comes and we see this:
118 - wake up
247 - 10 am check
110 - lunch time

You see the pattern? Yep, me too. Stress inward much? Cool as a cucumber on the outside and sweating on the inside. Stress drives up her numbers. Gary would tell me about it and how he would raise basals by close to 100% for situations that were stressful. But really, my 8 year old didn't stress about anything, so in one ear, out the other. I did lodge it in the back of my mind, along with a zillion other things, but things in the back of my mind rarely come forward to join the working crew of brain in the front.

Here it was, stress related BG skyrocket of numbers.
So, being the gal that I am, I raised her basal by 50% for 8:30 - 11 am.
I thought all was well and was gonna see how W, Th and F played out.

I made a crucial tactical error.

We changed her Pod from her bottom, to her tummy on Tuesday night.
Can anyone tell me what that means? Anyone?
I'll give you a minute..

Minute's up.

It means better absorption rates, for my girl.
The Pod on her bottom is a slower rate of absorption than her tummy. Her tummy sites are notorious for rocking her numbers. So are her arms. As we move sites around her body, her thighs and bottom are slower and often I need to adjust basal rates based on them.

Do you think I thought of this on Tuesday night?
Nope, I made the basal change and changed the site.

Wednesday morning brought her Pod on tummy and a new basal rate to combat the stress and hit that 10 am high hard.

The Perfect Storm.
Wanna see and cry along with me?

Wednesday
89 - wake up (Hey Penny, get a clue!)
29 - 10 am check (Grace reports that she would like to sleep, in class, to her teacher)

Juice is given. Two juices. Along with glucose tabs and a snack. The teachers and nurse shove 45 grams of carbs down her. It takes about 40 minutes, but we see a 89, 109 and whew! we made it out of the storm.

The hell with the stress high. One week of 240's at 10 am, I will take it, in a heartbeat.

Amazing

Today was our 3 month endo appt. The last three months have rolled by pretty smoothly I thought.  I was able to adjust when needed, we made it through a stomach bug in January and basically were just rolling along, doing the D.

Until the last two nights... which left Grace with lows of 36 and 49, and me, up for hours trying to bring them up. Temp basaling my heart out. Suspending insulin for hours at a time. And each of them began with me adjusting an out of range BG number. The adjustment left her crashing. I had already changed her correction factor at night from 1:250 to 1:300, and it was time today to ask her endo about upping it even further, showing her this in her log book from two nights ago:

6 pm - dinner 130, carbs guessed and dosed
8 pm - bedtime check 205 (adjust with .35) - I think I SWAG bolused dinner there, resulting in the high
9 pm - 102 (with .30 IOB) - that means .05 dropped her 100 points. Uh oh...
10 pm - 39 (here's where I curse correction factors)
blah blah blah, a night of staying awake and suspending insulin, 3 juices and waiting... you don't want to know. it was a long night.

Yeah, we seriously needed to change correction factors. Like 1:350 or even 1:400 at night now. And just 6-9 months ago, she was 1:80 during the day and 1:90 at night. Dr. seems to think it's a phase and after a month or so, will end up right back to her old correction factors. We shall see, for now, 1:350 it is for the night. (Everyone cross their fingers in unison now.)

You see, even from these two nights, these HARD two nights, where I posted on Facebook my failures, as I saw them, I felt bad about myself. I felt guilty. I felt like here she was, Grace, low and I couldn't get her up. I felt guilty that she ended up there in the first place. 39 for God's sake. I am hard on myself and I walked in there knowing the past three months had been pretty good. I knew the numbers in the meter - roughly 60% of her friggin numbers were in range for pete's sake! Roughly 30% were above range and a stinking 10% were below range.

And you know how I felt? Like crap.
Because of two lousy days.

But for everything, there is a flip side.
The darkness and the light.
The yin and the yang.
The up and the down.
And a lid for every pot (but that's just what my mother said when she saw two people who belonged together in life)

There was a new CDE at the endo today. She was new to seeing us in the practice, but not a new CDE, she's been at it 22 years with this same doctor. Karen started off asking me about this basal rate, that carb ratio, trying to get a feel for how much I knew about D. She asked how much care Grace had for herself - and frankly, the girl can count carbs, dose herself, temp basal extend a bolus and completely change her own Pod by herself (except she needs help drawing up the insulin from the vial). I told her everything and apparently, I talk fast. I saw her eyes glaze over once, but if you know me, I love a good talk about diabetes with people who get it. I could tell Karen got it. She kept up with me, going straight for the meat - pouring over logbook numbers, basal adjustment, basal testing, testing carb ratios and oh yeah, insulin sensitivity.

(It may seem my life has shrunken to this, I get excited about a good conversation about my daughter's diabetes. I don't know whether to laugh or cry.)

The nurse stops in and opens the door. 'Her A1C is 6.4' she announces.

As we are talking, she looks up at me and stops talking.

'You are amazing. Grace is lucky to have you. How do you know all this?' she asks.

'I mean, I read a lot, a lot, a lot about diabetes, I like data. I try things out. I have a specific goal in mind, an A1C hovering around 6.5%. I know my goal. I read blogs and research sites, I have a great endo, Dr. B., and a great CDE, Gary, who teach me a lot. I get with other PWD to learn how they grew up and what they know, they have so much to teach us parents of kids with diabetes. I hang out with other kiddos with diabetes and their moms. I mean, you know, in my heart I am a teacher and I like to learn and well, this stuff is good to me. If I can learn it, then I can teach it to Grace, and isn't that who we intend to learn it? I'm not the one with diabetes, she is. So, the more I know, the more she knows and the more I learn, the more she learns, that's better, right?'

I think I said that all in one breath. Yes, I talk fast. I'm from Philly. (And I say 'wudder' for water.)
And I had tears welling in my eyes. Cause I saw myself in a new light.
I was amazing?
Seriously?

Maybe if I harbored the 'amazing' part in my heart instead of the 'crap' part, I would feel better huh?! Some lessons come hard to me. But this one hit home. Here I was, managing D for three months (well, two years + now) and rockin it,  and I brought myself down with two nights. Two nights. What was I thinking? It's like the two stinkin nights erased 90 flippin days of hard damn work.

I decided to take the compliment, instead of trying to deflect it, as I normally would.
The light bulb went on.

'Thank you, I mean, really, thank you. I'm the one lucky enough to have Grace, but thank you for that, I put a lot of time and work into all this managing diabetes and keeping her healthy.' I responded.

I accepted it.
That what I do, what YOU all do, is amazing.

To all the mamas in the DOC, I want to pass it on to you.
That's what we need to do with each other. Pick each other up after the hard days and tell each other.
Remember, some lessons are hard to learn. It has taken me two years and I'm just starting to learn it.
Accept the compliment. Don't deflect it.

YOU are amazing in the care of your child with Type 1 diabetes.

YOU ARE. 

Changer of lancets

I admit it, I'm a lancet changer.
It's only once a day, in the morning.
And even that, the once a day, I feel guilty about.
Cause Grace checks, on average, 8-10 times a day.
8-10 uses for one lancet. Yuck, come to think of it.
I should change it every time, I know.
I'm gonna try and improve and get it up to two times a day. Honest.

Yet, whenever I have a D-meetup with other PWDs it's kind of the laugh-around-the-table fact that people don't change their lancets very often. I mean, as in weeks, months and years not very often. And often people joke about who has had the longest-serving lancet in their device. Often it's badge of honor to see who can't remember the last time they changed their lancet.

My last Philly Focus Group, sitting around the table with 6 people with diabetes, the biggest laugh came when one man said it had been years since he changed his lancet. He was serious folks. I chuckled, but honestly, I thought, how disgusting. It's like he never considered they become dull, hurt more and frankly, are dirty.

I'm not professing to 'get it' cause I don't.
I KNOW there are a zillion and one things to remember when it comes to diabetes care. I KNOW.
I KNOW it's one more thing to do, one more thing to remember, one more thing to be responsible for.

But isn't it just healthier to change the lancet folks? I mean, of all the things we DO for our kids or ourselves if we have diabetes, this one just breaks the bank? Too time consuming? Too hard? Shortage of lancets around? Too complex to master? Honest? Really?

I'm not sure why I am even blogging about it, it seems judge-y of me to consider whether or not people change their lancets. You want to use a lancet that's a year old and dull and hurts more than a new one? Go ahead. Just not our thing. Call me judge-y. Go ahead.

All I ask is that next time everyone sits around the table comparing when they last changed their lancets, the badge of honor should go to the people who actually do it.

Missing NY man with Type 1

Just thought I might help get the word out there.

This is a parent's worst nightmare, well, not quite, but I won't even go there.

I cannot imagine my gal G wandering around, confused because of a low or a high.

My prayers are that they find him soon.

Newton police search for missing N.Y. man

Type 1 University class!

Some of you may remember that I gave away one online course at Gary Scheiner's Type 1 University as part of Grace's 2 year Diaversary. Gary graciously let me take the class too, after signing up the winner of the class, Jen from I Am Your Pancreas. We took the online class 'Mastering Pump Therapy' together last night at 8 pm (EST). And I was in my jammies (shhhhhh, no one has to know!)

It was marvelous!

It was easy to log in, having been sent an email from Gary before the class started. About 15 minutes before the class started, I logged in and got set up.  I clicked on the link to the web course and entered the password. Two steps and voila! it loaded!

Once the first slide came up for the presentation, there appeared Gary in the lower right hand corner.

He had his headset on and I could see him. He could not see me though. He can see who has logged on for the course and who is 'there' so to speak, through the list of names. I didn't know who else was in the course with me, all I saw was Gary in his office.

Here is a screenshot from the beginning of the class, before it started. That's all I will show about the course, cause if you want to learn this stuff, you GOTTA TAKE THE COURSE!

I love how the screen has 'legs'
That's my girls legs at the beach peeking out, by the way.

For one hour, Gary lead us through advanced pump therapy, detailing everything from basal testing to temp basals, prolonged boluses, DKA and how to get the most from your pump. I took notes, and I asked questions by typing to Gary on the screen above his head there. He would get the questions from the class and answer them throughout his talk.

It was good stuff guys and gals. Meaningful stuff that can make you the master or mistress of the pump. This is where you cross the line from good management to great management, and I don't say that lightly. This is the knowledge that brings down and A1C and lets you have control over various situations called 'life.'

I view it this way. I can attach that pump to my gal and be done with it, or I can learn how to master it, truly master it. I mean be the flippin Jedi of the pump attached to my gal. To where it seems like second nature at times - when to temp basal, how much to temp basal, when to prolong bolus, how to get things back on track, etc. In turn, when I learn all that and practice, practice, practice, it does a few things - it frees up my time fighting highs and lows, it lets my child see that more knowledge is a great thing, it keeps her healthy longer, it imparts the knowledge to her (because one day she will be a grown-up with diabetes and not my baby anymore) and it doesn't make this darn disease any more frustrating than it has to be. Knowledge is power baby.

I am by no means the mistress of my gal's pump. I am at it's beck and call most days and some days I am convinced a monkey could operate it better. But I swore to myself when she got it, that for both her and me,  that I would learn this to the best of my ability. To prove to myself and to Grace that we could do it. That there would be more sunny days than cloudy. That we would keep on keeping on, learning and growing and living. 

At the end of class I thought of all the CDEs we see, some good, some not-so-good and some who don't know all this intensive pump management. Here is a CDE who knows it, lives it, and is here, in your living room, teaching it to you. 

Take advantage of it. Gain the knowledge. Take the courses.

www.type1university.com