Saturday, January 29, 2011

Those we have lost

For those we have lost in the diabetic community.
And that's what we are, one large community.
Remembering those we have lost to Type 1.
And raising my glass, in a silent toast, to those who are still here
Day after day, week after week, year after year
We carry on in their name

Monday, January 24, 2011

the Betes event!

On Saturday we went to the Betes event, hosted by the ever lovely Bennet and Kimball Dunlap. Bennet is of the Your Diabetes May Vary fame and of course, the Betes. Oh it was fun and informative and it felt like home, with parents and kiddos who understand. It was just Grace and I attending from 3pm - 5pm.

Bennet had Gary Scheiner as his speaker along with Lee Ann Thill (who writes the awesome Butter Compartment blog) doing diabetes related art with everyone.
Here's Bennet saying howdy to everyone!

These stickers were on each table, one of them says 'the Betes for President'
which I would totally vote for!

After our welcome, Bennet introduced Lee Ann, who is  Registered Board-Certified Art Therapist and provides art therapy and psychotherapy for people with diabetes. You can find her practice and what she does at Besides being a fabulous gal, she has had Type 1 for more than 30 years. She is funny, and knows her stuff. Grace had a great time making all sorts of art from diabetes supplies.

Just some of the tons of diabetic 'stuff' that Lee Ann brought for the art making!

Grace making art with her expired Pods!
She blinged them out.
My homage to the OmniPod.
Here's Gary, Colette (our OmniPod rep) and Lee Ann catching Grace making some neat stuff!

Our OmniPod rep., Colette, made a Pod spider, along with tubed 'web.'
Some of the creations were fabulous and intricate, like this 'box-machine.'
 You should see the OmniPod 'creature' that Connor Dunlap made!
Hopefully Lee Ann grabbed a picture of it, it was fabulous.
The art was very therapeutic - getting messy and creative and looking at everyone elbow deep in all kinds of diabetic supplies. Some of the diabetic supplies were familiar and some others I had to ask about. It was neat.

Then Bennet assembled us all into a small circle group and Gary spoke about his role as a CDE - (a fantastic one I might add!) - how basal rates may vary, the CGM and the pump,  how athletics and sports affect us, how he looks at data and sees trends.... The man knows his stuff. And he has Type 1. He spoke about his online courses about diabetes management at Type 1 University too and what information looks like in the 21st century - going to a class from home. It was formal and informal - there was discussion and questions, and laughter, and understanding, and support, and talk for over an hour. He makes you think and I heart him for that.

Gary and Grace chatting, T1 to T1.

Bennet, Patti, Kimball, Gary all chatting and everyone doing art!

Soon enough, it was over. More than 2+ hours had flown by. I cannot tell you what these get-togethers mean for me - camaraderie, bonds, learning, meeting other folk with T1 kiddos,  knowing other people are surviving and thriving with Type 1. All of it is wonderful. All of it.

There was one thing that was missing.
I had only wished that all of my DOC Mamas were there with me and Grace.
Truly, I wished you were there.

Friday, January 21, 2011

198 days and 300 nights

198 days

and 300 nights

Monday, January 17, 2011

We won! A round of Novolog for the house please!

First things first - WE WON our grievance against Keystone Mercy Health Plan!

You remember the grievance, right?!! The one where, oh say Novolog, would not be 'medically necessary' for Grace. The one that stated she needed to try the formulary insulin, Humalog, before they would agree to step it on up to Novolog. Yeah, that one.

The representative from KM, a 'member advocate' which I found through the grace of God, called on Friday morning and said "I have great news, the medical director just approved Grace for Novolog. There will be no grievance hearing on January 25th (the one scheduled at 2 am, that was sweet) She's approved for 2 vials a month for one year, until January 2012."

I was speechless for one milli-second.
Then I screamed "YESSSSSS!!!!!" into the phone.
The advocate laughed.
Then she said, "You know, the medical director was only going to approve it for two months and I asked him, do you think this mom is not going to bring this up again in two months?? Then he agreed to a whole year!"
I wanted to kiss her, really, or at least a giant bear hug.

Cause this has been a S---load of work for me since I found out the denial.
But I was SO very ready.

I had, ready to go to the grievance hearing:
* A letter from Grace's endocrinologist on why she should stay on Novolog
* A letter from Gary, Grace's CDE, why she should stay on Novolog
* Two years worth of scripts for Novolog, printed out at CVS
* Two published articles about the difference between Humalog and Novolog
* A lawyer from the PA Health Law Project

I had all my bases covered. Completely.

And they folded.

I believe the current score is:

Penny - 1                Keystone Mercy - 0

Thursday, January 13, 2011

We have 2 winners!!!

Thank you everyone for celebrating Grace's 2 year diaversary with me! 
Thanks for all your entries into the giveaway too!
I listed all the comments - who wanted which package, then numbered all of you on the list. I had 16 entries for package #1 and 13 entries for package #2.

The packages were:

#1 - Bayer Contour USB meter, Delica lancing device and Delica lancets

#2 - Type 1 University class - FREE!

The winners are:

Prize Package #1 - Bayer Contour USB meter, Delica lancing device and Delica lancets

Kelly Harp (who commented as Anonymous, then later posted her name!)

Prize Package #2 - Type 1 University Class

So, Kelly and Jen, please contact me at my email - and I will get your prizes to you!

Congratulations to the winners! Thanks everyone for entering!

Monday, January 10, 2011

Happy 2nd Diaversary! And a giveaway!!!

Happy 2nd Diaversary Grace! 

I can't believe it's been two years and I also can, cause it seems like more than 2 years, some days it seems like a lifetime we have been doing this D dance. I do remember the times before diabetes, the 6 years free -  of carb counting and shots and doctors and endless boluses. I remember, so if you ever start to forget those years, Mama's got them right here honey. I will tell you all about them, anytime that you want to remember what you, and we, were like before diabetes.

You are an amazing child my sweet dear Grace. You make me laugh every single day. You make me proud to call you mine. You are resilient, funnyindependent, smart as a whip, brave, courageous beyond all understanding and brutally honest. As our friend Kelly says "Tell us how you REALLY feel Grace" while we all chuckle. You want honest - ask Grace. She has no little man inside her head,  editing what she says. For that, I appreciate and love you. I always know where I stand with regards to how you feel, what you think and what you need and want.

Diabetes, if I can borrow Kerri's perfect expression 'Diabetes doesn't define me, but it helps explain me.' It fits Grace to a 't.' It has helped you grow in ways I couldn't even begin to articulate. I see how you rejoice in the every day, how you bounce back from hard times, how every morning you wake up and tell me that "Today's gonna be a good day Mama!" and you truly believe it. I think diabetes played a part in it, I really do. There's a reason they gave you the 'Little Miss Sunshine' award at diabetes camp. You are. You shine.

So, happy 2nd diaversary my sweet Grace. It's been quite a journey so far, huh babe?! I am sorry that you spent your 2nd diaversary sick with a stomach bug. We shall celebrate later - with something grand and sweet!

Here's to many more years, of growing, of laughing, of loving and celebrating who you are.

It's a giveaway in honor of Grace's Diaversary!

There are 2 prize packages, of some of Grace and I's favorite things in the D;

#1  Bayer's Contour USB Meter and Delica lancing device with Delica lancets

You know why she likes the Contour USB meter - cause Nick Jonas promotes it! Did you hear me - NICK JONAS! and you must SCREAM his name each and every time you mention his name, cause he's, you know, NICK JONAS! So, here is his meter. You can win it!

If you have not tried the Delica lancing device - first, enter this giveaway and you might win it and second, go and get one - right now! Seriously, it hurts less. She swears by it now. Tiniest lancets ever. It kind of 'bounces' while it pricks the skin and doesn't 'shunk' the way other lancing devices do. There, wasn't that a clear explanation? Honestly, it is a wonderful lancing device and Grace's fingers have less holes in them just after one month using it. It's that good. And they didn't even pay me to say it. They should, but they didn't. Enter the giveaway and win the lancing device and a 100 pack of lancets.

#2  A Type 1 University class!

You got it! Our CDE, Gary Scheiner, is the force behind Type 1 University. He is the owner of Integrated Diabetes Services and is an excellent CDE and every time we go see him, he teaches Grace and I something new. He is knowledgeable, smart, incredibly data-driven and most of all, helps me problem-solve. And he is Type 1 himself, he knows of what he speaks.

Type 1 University is an online place where people can learn, through online courses, about how to better manage their Type 1 and insulin use.

There are courses on:
* Advanced carb counting
* Mastering pump therapy
* CGM - Getting the most from it
* Strike the Spike: After-Meal Glucose Control
* Hypoglycemia Prevention and Management
* Fine-tuning basal insulin

The winner can choose the online class they would like to take, and I will pay for it! Easy peasy!

Here's what I think about entering:
1. Leave a comment and tell me which prize package, number 1 or number 2, you would like to win.
2. Announce it on your blog and tell people to come on over and enter. That gets you one entry.
3. Sorry, I don't Tweet. So if you do Tweet it, great, but I won't know about it. Tweet tweet tweet, but it's not gonna earn you another entry. Am I being a hard-ass? Oh well, deal with it.
4. Likewise with Facebook. I know everyone and their mother (ok, maybe not their mothers too) is on it, but frankly, it's ok if you don't Facebook it. There, second decision made. If you Facebook it, that's great, but not gonna earn you another entry.
5. Long winded rules, don't you hate 'em?

TWO ways to enter - 
1. Leave a comment here. I don't even moderate them, so say anything you want! Tell me which - #1 or #2 - you would like to win. 
2. Announce it on your blog if you have one, tell me you blogged it below in the comments section, and tell people to come on over and enter.

We'll have entries until Thursday night, January 13th. Midnight my time, EST, in PA.
I'll be up, counting down the minutes.
No, I won't, but wouldn't that be funny?
I'll announce the winners on Friday, January 14th right here on this blog.

Ok, proceed.
Good luck!

Saturday, January 8, 2011

1st Level Grievance!

Remember the ensuing battle over Grace's health insurance denying her Novolog?
If not, read this. I warn you, you had better be sitting down, with nothing throw-able in front of you.
Angry yet?

Yeah, me too. I filed a formal grievance against Keystone Mercy the day after getting that letter.

Just got a letter today stating that my First Level Grievance hearing is January 25, 2011.
Wanna know what made me laugh about the letter?

It states the meeting time as 2 AM. I kid you not.
Keystone Mercy cannot even get a time in a letter right!
And this was signed by a person, who I guess never heard of proofreading something before sending it out.

I feel like telling them, you know, I AM already awake at 2 AM, why not?

It says I can bring a friend, family member or lawyer with me. Why thanks, Keystone Mercy, I do think I will take you up on the whole lawyer thing. Cause one is coming with me.

And I know all of you out there, my DOC friends, if you could, you would fill the seats behind me.
I plan on taking each and every one of you there in spirit with me.
This is a fight for not only Grace, but for all of our kids.

Wednesday, January 5, 2011

Dear Glucagon

Dear Glucagon,

I never wanted to open you. I never even wanted to KNOW about you in the first place, so there! In fact, when they talked about you in the hospital, my eyes glazed over and I think I even put my fingers in my ears and started  humming 'La la la la la.' That's how much I never wanted to think about using you.

Two years into the game and I never have had to open you yet. Oh sure, I showed you off to people - Grace's nurse at school, camp, and you just sat there, all red and foreboding. And when you expired, I even practiced on your old expired needles and vials. I thought you at least deserved to be used before I discarded you to medical waste. You must have resented that. Oh well.

Monday night though, you stood at the ready. Just sitting there on the shelf. Did you miss us or something? Did you feel me grab you and pry you open and feel my disdain for your existence? Oh no, you just felt the loathing, well, good, I did and I do. Loathe you I mean. The D I embrace, cause it's the only way I know to make it through this disease. But you, I can easily loathe.

You must have noticed the 30's that I couldn't get Grace out of for more than 25 minutes. It took two hours to get her to a rosy 96.(*Sorry if I gave anyone the thought that she hung in the 30s for 2 hours - my writing ain't grand folks. What, you mean you can't read my mind? ;0) You sat patiently waiting as I poured 4 juices down her and forced her to eat a banana at 10 pm at night. That was fun times, I tell ya. And you just sat. You even sat through the phone call to the pediatric endocrinologist on call, who just happened to be our lovely own Dr. B., at 11 pm. She told me not to use you just yet. HA. I waited out the low and sure enough, it took about two hours, but you rose and steadily rose.

I read about how you are being used in other families. It seems you have visited Caleb and he vlogged about you, and his mom Lorraine has posted about using you in mini-doses that is invaluable. I thought of her and Caleb on Monday night.

So, in parting, I just wanted to say while I appreciate you hanging around all this time, along with your twin buddy on our shelf, I am happy I haven't had to use you yet.

But I am glad you are here.

Penny and Grace

Saturday, January 1, 2011

Novolog is not 'medically necessary' or the letter that made my head almost come off my body

Happy New Year everyone!

Ok, now sit down. I mean it. Sit. Down.
Then read this:

Did your head almost come off your body? Steam from your ears? Or is your jaw still on the floor?

Yep, Grace's insurance, Keystone Mercy,  the flippin' Medicaid that the state put her on on December 1st, denied her Novolog and said that she needs to use the 'formulary' insulin. That is Humalog.
If I wanted her on Humalog, I would have had her on Humalog.
If her doctor wanted her on Humalog, she would have placed her on Humalog.
If her endo thought Humalog would do better by her, she would have prescribed it.
As it turns out, gee, she is on NOVOLOG - for TWO YEARS now!

And you know the sole reason that Keystone Mercy decided this???
You guessed it folks.

Money was the sole reason they made this decision. Novolog costs more than their formulary.

Not for one minute do I believe that they have Grace's best interests and healthcare at heart.
They didn't consult her endo.
They didn't consult her primary doctor.
They didn't call me.
They didn't read her files or ask for her history.
They didn't call her CDE.
They didn't look at how long and how successful she has been on Novolog.
They didn't look at her A1C or her blood sugars.

They even go so far as to say that she has not tried 'formulary alternatives' which means she didn't try what they have rostered as the lowest-costing insulin they can get.
Oh, poor Keystone Mercy.

Monday morning - a complaint AND a grievance are being filed against Keystone Mercy.
Monday morning, the 'BitchSwitch' that my dear friend Kelly coined, is being flipped!
Monday morning, I am calling a lawyer at the PA Health Law Project.

It's so ON.

1-3-11 update:
* Complaint/grievance sent certified mail to KMHP
* Complaint/grievance filed over the phone
* Left case manager at KMHP left a scalding message on their voicemail
* Endo on board and sending letter in support of Novolog
* BitchSwitch flipped
* Head still on body, surprisingly