Tuesday, December 27, 2011

Where have I been?

The holidays - they overtook me! 





I'll be back in the next few days!

Sunday, December 4, 2011

T1Parents, Read this at Bennet's YDMV

If you are a parent of a kiddo with Type 1, read this piece over at Bennet Dunlap's YDMV blog.

Bennet is the parent of two T1 kids and a thoughtful writer. And an incredible voice in the DOC.


It's insightful, wonderful and spot on. (And has some wonderful football analogies.)

Friday, November 25, 2011

It started with the rice

Hope everyone had a wonderful Thanksgiving!

I am so very sleep deprived that it's not even funny. In fact, it IS funny, cause I will uncontrollably laugh at anything, precisely because I am sleep deprived!

Grace has had some wacky overnights this past week. Lows after dinner, then treated, only to rebound sky high. Wakes up perfectly in range. The diabetes Goddesses are seriously messing with me.

Here is a rendition of Tuesday night. In all it's glory. Ever have one of these nights?

5 pm - 127 BG - 68 g carbs - 3.10 units (2.00 now, 1.05 over 2.5 hours)
Dinner time. Perfect in range number. We have chicken and white rice. I know white rice is a challenge for her. It's one of her favorite foods, and we eat it about once a month.

5:20 pm - 43 g carbs - 2.40 units - temp basal +20% for 3 hours
She wants more rice. I up the insulin and add in a temp basal for good measure.

7:00 pm - 37 BG - Suspend insulin - 1 15g juice, 2 glucose tabs, 1 15 g snack (all uncovered)
Grace comes out of the shower and says she feels a wee bit low. I test her. Thirty flippin seven. She replies that she feels more like a 65. Which I find funny, that she is in touch with what number BG she may be feeling. I think I dosed too much for the rice.

7:20 pm - 69 BG - Still suspended insulin - 1 15g snack (uncovered)
Still trying to climb out of the foxhole.

8:00 pm - 43 BG - Still suspended insulin - 1 15g juice, 1 17g granola bar (all uncovered)
OK, really, forty flippin three? I thought we were climbing out, not heading back down the foxhole!

8:30 pm - 61 BG - Still suspended insulin - 1 about 17 g banana (uncovered)
Here we go again. I think we heard this tune before, didn't we? Up, down, up, down.
Grace goes to bed. I assure here 'I got this honey, you just go to bed.'

9:00 pm - 106 BG - Still suspended insulin (for good measure)
I see the light at the end of the tunnel. Little did I know that was the freight train headed my way.

9:20 pm - 262 BG - Turn insulin basal rate back on - Bolus .70 units for high BG
OK, didn't see that coming. All of this food and suspended insulin is starting to build up. But I'm too scared to set a large temp basal for fear of plummeting again.
The house starts to go to bed. It's just me. Awake on the iPad in the hallway.

10:00 pm - 259 BG - (.65 IOB) - Temp basal of +20% for .5 hour
Isn't that the same number? This is where I loved Apidra. Man, that insulin attacked highs and sent them down baby. Novolog takes its sweet ole time. Ticks me off. I can take lows, it's the highs that do me in.

10:30 pm - 305 BG - Bolus .35 - Temp basal of +30% for .5 hour
Here's where I cursed, cause I finally catch on how this night is gonna roll. We are climbing. The snacks are digesting, the lack of insulin from suspending it, all coming to bite me in the bottom. I am sleepy and I just wanna cry.

11:00 pm - 342 BG - Bolus .35 - Temp basal of +50% for .5 hour
I believe I cursed a lot here. A whole string of obscenities, but I used no voice, just mouthing filthy word after filthy word. It felt good. I throw caution to the wind and I plug in a +50% temp basal. Who's your Mama now, D, huh?!!

11:30 pm - 309 BG - (.95 IOB) - Temp basal of +20% for 1 hour
A lower number! You know how our thinking is so twisted that I am excited to actually see a 309. That's sick, somehow. But she is coming down. I think I kissed the PDM.

I sat back down in the hall with my iPad. I leaned my head back and fell asleep. This is not like me.
I awoke with a start. It was 1:00 am. Craptacular.

1:00 am - 343 BG - Bolus .65 - Temp basal of +50 % for 1 hour
Mother of God - she's up again! What the heck happened? Now I am REALLY awake.

1:30 am - 294 BG - Bolus .05 - Temp basal is still running
Yeah, lower!!!! Do you feel like you are on the rollercoaster with me? Only this rollercoaster stinks.

2:00 am - 281 BG - Bolus .10 - Temp basal of +20% for 1 hour
Now I'm mad. Now, D, you have totally ticked me off. You will not win.

2:30 am - 204 BG - No bolus - Temp basal is still running
I am winning! I am winning! I am winning! I also feel punch drunk.

I try and lay my head down for a few hours.

6:00 am - 110 BG - No IOB
Hee hee hee. I think I might have won :0)

That was my night. Does any of this sound familiar to you? Cause I know there were Mamas sitting in hallways just like me, waiting for lows to rise and highs to come down.

Grace wakes up at 7 am.
'Mom, how was my night?' - Something she always has asked me, meaning 'how were her blood sugars overnight?'

'Oh honey, you were fine all night. I made sure of it.'

Tuesday, November 22, 2011

Thankful

Happy Thanksgiving everyone!

Thank YOU, DOC for all the support you give me and Grace throughout the year.
Thankful for the roof over our heads, the warm food on our table and the gift of family.
Thankful for medicine and technology, which keeps my daughter alive every day.
Thankful for doctors, guiding me in the care of my daughter.
Thankful for teachers and staff who care for my gal during the school day.
Thankful for a job to do and the hands to do it with.
Thankful.


It's a Wonderful World folks. Here's a little Louis Armstrong to remind you.


Wednesday, November 16, 2011

The Book of Better

Addition 11/21/11 - Kim over at the uber-fabulous blog Texting My Pancreas also reviewed The Book of Better. She gives some great thoughts about it. Go over and read her review here.

Wanna read something that will motivate you to make your 'diabetic life' BETTER?!
I found it, in The Book of Better: Life with Diabetes Can't Be Perfect, Make it Better by Chuck Eichten


The publisher of the book, Three Rivers Press, sent me a copy to read and preview. I read it in one sitting, the day after getting it. It's that good. And funny. And insightful. Oh and it's straightforward and honest. Chuck makes you laugh, makes you think, makes you think some more and then makes you question how you can do it all better.

Chuck has been diabetic since age 13. He grew up in the Midwest. Works for Nike, first as an apparel designer, then in Nike Brand Design, and now as the Design Director for the Department of Nike Archives (DNA). You can read his biography here. Fascinating career.

The whole premise of the book is that, as Chuck says, we can't be perfect, but we can always, always, always, be BETTER. Better at everything, including diabetes. We can always make better decisions about what to eat. We can always make better decisions about exercise and insulin intake. We can always do better with our A1Cs. We can always do better in accessing and using technology to take care of ourselves and our diabetes. Always. DO. BETTER.

And isn't that a wonderful way to look at all this care? That we can't be perfect and we should stop trying to be. But if we adopt the mantra of doing BETTER, well, that's DO-ABLE. In my mind, it's perfect sense. Stop the perfect Penny. Stop trying to achieve the perfect diabetic care. Do BETTER Penny. Work with what you have and what you can access and do it BETTER than you have done it before. It won't be perfect, but it sure will be BETTER. Physically, emotionally, mentally. Better.

A couple quotes stood out for me while reading:

'The highest gift a patient with diabetes can ever receive is a way to make diabetes itself the road, to find meaning in living with diabetes.' - Dr. Victor Montori, Div. of Endocrinology, Manyo Clinic (foreward)

In his chapter about 'Talk About Diabetes' Chuck has some profound thinking to share. In a most straightforward way...

 'Diabetes is a scary monster. Diabetes is just about everything you've heard.
Thoughtless, inconsiderate, selfish, sloppy. Shows up early, goes home late. Reckless and bullying. Prone to sneak attacks. And unlike many of our other personal scary monsters, diabetes isn't just made up in our head.
Scary monsters, real and imagined, are part of life. They don't go away when we run from them. They don't go away when we give in to them. They don't go away when we ignore them.
Truly, the most effective scary monster deterrent is understanding.
The second-most effective scary monster weapon comes FREE with understanding: COURAGE.'
                                                                                                     - pp. 36-37, The Book of Better

And something that really struck me, in his chapter about 'Future Better:'

So what do kids with diabetes need from the grown-ups?
Kids needs information - Learn everything and then share with your child what they need to KNOW - not what you hope, or wish or guess - but what they NEED TO KNOW about diabetes and moving and eating and insulin.

Kids need positivity - They don't need pity or sadness. Diabetes is not a cause for sadness. Sadness gets your kid with diabetes EXACTLY NOTHING. Kids will feel bad for you, the parent, because you are so sad. And it's not about you. And it's not about sad.

Kids need you to believe - Diabetes is CHALLENGING, not DEVASTATING. 

Kids need you to show them - If we want our kids to believe what we say, WE HAVE TO DO WHAT WE SAY.
                                                                                                  pp. 262-263, The Book of Better

And there are tons more. His chapters include: 
'The Bottom 10 Bad Things About Diabetes'
'The Top 3 Good Things About Diabetes. I An Not Kidding.'
'People with Diabetes and the People Who Love Them
'Insulin; A Wish Come True'
'The Best Available is Better'
'Ups and Downs of Highs and Lows'
and that's not even all of them!

I cannot recommend this book enough, whether you are a parent of a Type 1 child or a Type 1 adult. I found it refreshingly honest, cut-to-the-chase about diabetes book, that lifted me up and gave me a feeling that I can DO better with diabetes. That I indeed, cannot be perfect, but I can always DO better by Grace. 

And isn't that something, to hear that? It is for me.

Buy the book. DO BETTER.

Disclosure: Three Rivers Press sent me the book for free. They did not ask me to write a review. All opinions are truly and totally my own. But you really should buy this book. Get it on Amazon for $10.20. That, my friends, is a well spent $10.20 so that you too, can do and feel better. 






Thursday, November 10, 2011

This should make you chuckle

When I schedule Grace's follow up endo appointments now, I can log onto our hospital's new portal and see the appointment, along with test results.

So, I logged on to see our next appointment.

Ummm, they may want to think about how they abbreviate their Follow Up  'Visit Type.'

Diabetes FU indeed.







Thursday, November 3, 2011

Endo Visit & Diabetes Candy Exchange

We just had our 3 month endo visit on Tuesday. Grace's A1C remained at 7.1. Yes, I am fully and well aware that that is a 'good' A1C, but I am used to 6.6, 6.8 and even 6.4's. And I so wanted to 'do better' this time around, as her A1C 6 months ago was also 7.1. Then again, I know that I should be thrilled with 7.1. Her growth hormones are beginning, we are starting early puberty and had some uber-highs, from the hormones and from our knock-down-drag-out battle with Apidra. That's chronicled here.

I chalked it up to 'It's good, but we can do better.' And just to put it out there, that is HARD for me. Usually when I do and try my best, I get my best. And maybe this IS our best. Frankly, maybe this is rock-your-socks-off-no-one-else-could-that best, but it doesn't FEEL like MY best, if that makes any sense at all from my twisted mind.

A1C does freakin things to your mind. It's not a grade, yet it IS a grade.
Hell with it.
We will do our best and see how we fare in 3 months.
That's all I can do.


We attempted the Bayer A1C test. What a bust that was. Apparently, we did not have enough blood to do the test. We filled the 'blood filling device' to its brim, but the A1C device gave out a code after 5 minutes that there was not enough blood. Big disappointment. I am saving the other test in the kit for our 3 month endo appt in February.

Look - here's us following the darn directions!
And waiting 5 minutes for the test to end.

The code that says 'not enough blood.'



It was a completely diabetic day on Tuesday, as we had our annual Diabetic Candy Exchange at our local hospital. You can read about last year's 2010 Candy Exchange. Once again, it was fabulous!





Grace brought her bag of candy that she did not like to the exchange. She kept 'the good stuff' as she puts it. She forked over the rest. They carted away tons and tons and tons of candy that the kids brought in. Literally, wagons of candy. I, of course, scooped out the fun size little bags of Skittles - what diabetic throws them away? They bring you up from a low baby! I put my hand right in that giant bag and scooped them out. Grace was embarassed. I wasn't. Any one of you D-Mamas would have done the same thing!

They had pizza, of course. Grace and I chose the hospital cafeteria food instead. They had booths, a pumpkin carving man, raffles for the kids to enter, and of course, face painting.

Grace needed the swirls on her face.




And they rocked my gal's favorite thing - CRAFTS!!!!
And girl, did she ever go to town on the letter bracelets and necklaces.
They totally cracked me up.

Here is Grace's:



Here is the one she made me:



Here is the one she made our OmniPod rep, who had a table there:


Sunday, October 30, 2011

Walmart D-Supplies & Bayer A1C Test

Our town just got a new Walmart. We've only ever had Targets. Opened my eyes to a whole new shopping experience, I tell ya! We just got the Walmart ad in our Sunday newspaper and lo and behold, there was a whole section devoted to diabetes! I showed Grace and she said 'It's like it was meant to be!' - you would have thought I showed her the Toys R Us toy catalogue or something!

Walmart ad booklet

Good to know Walmart has Humalin for $24.88!!!
Glucose tabs - $1.23 - Grace chose the watermelon and fruit punch flavors
Our 3 month endo visit is on Tuesday. I have always wondered if the Bayer A1C kits are near what our office A1C is. So, I bought one and will try it out on Tuesday when we go.

I opened the kit and well, it looks a little more involved than I thought. Good thing I am a reader-of-directions before I attempt anything. Unlike others in my family who-shall-not-be-named but they are also the -I'll-be-damned-if-I-will-ask-for-directions kind of person. Wink wink.

$22.48 for two A1C test kits in one package


Ahhhh, the elusive 6.3. One can hope, right?!

Lots of packaging. Codes much match. Do not open until ready to use.

Each kit has two cartridges that are inserted into the black base.
Then each has a blood collector and 'shaker' that is pressed into the front of the base.

First you take the blood sample and insert it into the blood collector.
Shake it and snap on the cap and then stand it upright.

Then you connect the cartridge to the base, wait for the prompts and remove the cap
off the blood collector. Then you press the tip of the blood collector into the front.
5 minutes later, voila! An A1C!
So, I will let you all know how this goes on Tuesday.

Tuesday, October 25, 2011

JDRF Walk 2011

Our JDRF Walk was this past Sunday. We participate in the JDRF Philadelphia Walk, which takes place at the Art Museum circle in Philly. It is a grand place to hold a walk. Everyone dutifully runs up the steps, aka Rocky. There are masses of people. The actual walk takes place on the drive around Boathouse Row and the Schuylkill River (we say 'Skoolkil')

We are Gracie's Gang for our walk. It's just our little ole family who does it, but it makes us feel united. It makes us feel we are in this together. It makes Grace feels so supported, from the people who matter the most.

Most walks are hundreds of people. Some are thousands. Our walk this year had more than 10,000 people walking in support of Type 1 diabetes. There were hundreds of teams. The largest team, The Cohn Sisters, alone, raised more than $1.75 million over the past 4 years. The Walk raised $2 million this year.

Here's a short news segment video of the Walk. Yes, we are in the crowd and we waved at the camera. We are in the light blue shirts, right side of the screen, in the large crowd video. Don't be disappointed you can't see us, we appear for like 6 seconds.



The greatest part of the walk this year was seeing Haley speak. Haley of the great blog Naturally Sweett. She spoke so clearly, and so much from the heart, about diabetes. And she mentioned the DOC!!! I cheered. You can find what she said and see the video of her saying it, here on her blog. I am so very, very proud of her. She brought tears to my eyes.

And Grace and I finally got to meet Haley in real life! (She's beautiful, by the way!)

Haley and Grace
Other people on our 'team', so to speak, showed up too.

Our first CDE at our endo's practice!

Our endo, the fabulous Dr. B. showed up too!!!

Our OmniPod rep!

The one thing I want to tell all of you is how utterly breathtaking it is to walk with so many people, focused on one thing, all at once. The crowd is massive. You can hardly take three steps, then you take four, then you start to walk, with everyone else, side by side. And people are laughing, and talking. And there are t-shirts and banners and kids in strollers, and pumps and tubing and backpack and mommies and daddies, all walking. For the same thing.













Friday, October 21, 2011

Halloween Tips on A Sweet Life




I was asked to guest post, along with some other D Mamas and D Papas, 
over at Jessica Apple's blog, 

She asked us to reflect on Halloween and if we had any tips for managing Type 1 and the holiday.

So, head on over and check out what we had to say.
I kept mine short and sweet.

Halloween, it's coming, get those carb count lists ready!
You will find some great ones here and here.





Now, get out there, trick-or-treat and bolus!!!

Monday, October 17, 2011

CWD Technology Conference in Philly!




The Children with Diabetes Focus on Technology Conference 
is coming to Philadelphia in February 2012!

If you are even remotely close to Philly, I urge you to come!

Not only for the learning, but for me to meet you, o' faithful reader!

You can read about the conference here.

You can register for it here.

Come!

Wednesday, October 12, 2011

Hayride!

The kids say the floating white dots are 'orbs' - like The Sixth Sense.
I say my camera lens is dirty.
Cause if they are orbs, that FREAKS ME OUT.
And that means there are a LOT of dead people at our farm.



Hayride! On a huge wagon, in the pitch black night.
We took a ride to 'Witch's House.'

There it is - Witch's House!
She's a friendly witch who gives out cookies and tells jokes.
Cause if it had been a SCARY witch, Mama would not have been on the ride!!!!

The Witch herself!
She gave out giant sugar cookies. I grasped at 35g carbs for it.
We ended the night at 89.
High five me!
The night ended with a bonfire, roasting marshmallows and apple cider.
SWAGged a 6g on each marshmallow and a 15g for a 6 oz cup of cider.


This should look familiar, doing it all one-handed.
And bolusing while she runs and grabs another marshmallow.
I'm surprised I can't juggle.

Thursday, October 6, 2011

Miracles Every Day



This is the post that has nothing to do with you-know-what.
It has everything to do with miracles though.
And something as simple as going to the dentist.



Hope is a form of planning. -Gloria Steinam


My oldest child, Maddie, has autism. She's 14 now and was diagnosed when she was 2 1/2 years old. This was back in 1998. There wasn't the knowledge, the awareness and the multitude of children with autism that there are now. It was very lonely having a child with autism in the late 1990's. It was very, very, very lonely having a girl diagnosed with autism, as the majority of those diagnosed were boys.

Of all the challenges Maddie faces, one of the largest for my daughter has always been oral sensitivity. Whether it be to hold or cold foods, taste or texture, Maddie was, and is, very sensitive to what went or around her mouth. She also had a sensitive gag reflex, meaning that as soon as something did go in her mouth, it stimulated her to gag, which in turn, became throwing up. As you can well imagine, that presented problems in trying to go to the dentist.

I first tried going when she was almost 3 years old. Maddie ended up kicking and screaming, assaulting me and almost assaulting the dentist and almost being restrained in the dental chair. She did not understand what we were trying to do, so she fought. We were asked to leave our first dental office and not come back. So, at age 3, no teeth cleaned by the dentist.

We tried again when Maddie was almost 4. Again, the same situation. This dentist, like the others, demanded that Maddie sit in the reclining dental chair, with a bib, and she was not allowed to touch anything. All of those things did not work. When she would sit in the dentist chair, her gag reflex was stimulated and she would throw up. It took us one time in the dental chair and lots of vomit to figure out that this would not work for her.

Yep, asked to leave the second dentist too.
Okay then.



I found the Special Needs Dental Clinic at our local hospital through our developmental pediatrician we were seeing there at the time. Our developmental pediatrician, at our yearly visit, and after hearing our horror stories at the other two dentists, looked at me and said, you know, there is a dentist upstairs, one who treats kids with special needs, he will see her.

I practically ran up the stairs to introduce myself and Maddie. I made an appointment right then and there and began to spew forth our history and ended with 'Do you think you could just clean her teeth? Do you think you could just check them?'

You know what the dentist said to me 'She's a beautiful child. She's just lovely Mom. We can clean her teeth. It might take us a while, but I promise to never hurt her. I promise to move at her pace. And I promise that when she leaves my office every 6 months, she will have clean teeth.'

And as he said it to me, I started to cry. No one up until this point ever pointed out that my child was beautiful, that they saw the beauty in her. No one ever told me they would clean her teeth. No one promised me that they would not hurt her. And boy did I cry. And I hugged him and thanked him.

And we have gone back, faithfully, every 6 months, since 2001.

We started with Maddie sitting in a regular child's chair, hygienist facing her, Maddie wearing surgical gloves that she requested, holding every tool. Slowly opening her mouth, never asked to use 'Mr. Vacuum' or whatever they call the thing that sucks up the saliva. She was allowed to spit. She threw up - many, many, many times. And you know what they did? All those dental hygienists and I cleaned up the throw up and they continued to clean her teeth. We changed clothes after every visit, we were less-than-spot-clean. We once cleaned her teeth while she lay on the floor. We let her hold books and toys and lovies and chew tubes. We sang songs that she loved. We once cleaned her teeth while giving her a break to walk around every 4 minutes. She cried throughout one visit. She screamed throughout another. They kept cleaning her teeth and smiling.

It has been 10 years since that day that the dentist told me he would clean her teeth. And he kept every promise he ever made to me. He cleaned her teeth. He, to this day, never has hurt her. He moves at her pace. And each and every time he sees her, he takes her hands in his and tells her, straight up, that she is beautiful and lovely and my, isn't she growing up just great.

When Maddie was 4 and just getting started with him, he looked at me in the eyes after a visit and said, 'Penny, I know you won't believe me, but one day she will walk into this office and come back without you. She will trust us. She will sit in the dental chair. She will wear the bib. She will let us clean with all the tools. I know it. I have faith that we will get there.'

And I smiled, because that day, 10 years ago, seemed so very far off.

And yet, here I am.
10 years later.

And guess what Maddie did today?
She went back by herself.
She sat in the dental chair.
She wore the bib.
She let them use all the tools.
And she got her teeth cleaned.



Miracles every day.

Thank you Steve Jobs



Thank you Steve Jobs,
from every parent of a child with special needs
who you opened doors for - 
communication-wise, socially and emotionally.


Thank yous from special needs parents:
Love That Max - A thank you to Mr. Jobs
A Diary of a Mom - A Ding in the Universe

Monday, October 3, 2011

Badass D-Mamas

A couple months ago, someone wrote a blog post about dealing with Type 1 kids at a diabetes camp in the summer. The post went on to lament that some kids are 'pusses' (their words, not mine, and oh, it later got changed to 'wusses' - there, doesn't that make you feel better about your child??!!) because they may need EMLA cream when changing insulin pump sites, or that they may need hand holding, or they may need to lay down to change their site. The point of the post was to tell all of us D parents to buckle up, stop coddling the damn kids, stop creating these pusses and for Gods sake, it's not that bad, doesn't hurt and whoever the hell told you kids need special treatment???

Buckle up, ride the rodeo, stop whining, don't be a puss. Or a wuss.

Whew.

It got to me, that post. I think of it every now and then. And I think that the person who wrote it doesn't have an inkling of what it means to be a badass.

Yep, a BADASS.

I know some badasses. Specifically, some badass D-Mamas.
What makes a D-Mama a badass?
I will tell you.

If you raise more than one child with Type 1 in your family, you are a badass.

If you shoot skittles and other uppers into your hockey playing son and sit through practices, monitoring blood sugars like a honey badger, you are a badass.

If you tell it like it is, and ask others to create videos to help your son realize how great he is, you are a badass.

If you live thousands of miles away, but feel the same same, you are a European badass.

If you have kids with other conditions, and one with D, and you you rock it, you are a badass.

If you have your Type 1 son make videos, so he can help other Type 1 kids, you are a badass.

If your child changes his own insulin pump site, at his own pace, with support, you are a badass.

If you walk for diabetes and form a team, and 119 people show up for that team, you are a badass.

If you remind us all what we need to remember and know about being a DMama, you are a badass.

If you illustrate your life as a D Mama through gorgeous photos that show all parts of your sons life with D, you are a badass.

If you have one child with diabetes, then survive the diagnosis of another child, and maintain your sanity, you are a badass.

If your T1 daughter has a sleepover, and you go with her to let her have fun and feel like everyone else, you are a badass.

If you vlog about your daughters A1C with honesty and emotion, for all to see and to feel same same, you are a badass.

If you check your own blood sugar, to show teachers how to test blood sugar, you are a badass.

If your child has Type 1 and celiac, and you make sure they attend birthday parties, you are a badass.

If your child accepts their diabetes and wants to tell the world that it's OK, you are a badass.

If you share with others recipes that help your Type 1 child, you are a badass.

If you write gorgeous prose and write eloquently and honestly about having a Type 1 daughter, you are a badass D-Papa.

If you rock the shoes and a wicked sense of humor while caring for a Type 1 son, you are a badass.

If you parent a child who speaks up and says "I CAN have that!", you are a badass.

If you manage diabetes and have an 'off' day like everyone else, and everyone who reads it says 'same-same', you are a badass.

If you have sat in 504 meetings and worried about your son or daughter's care at school, you are a badass.

If you have pondered over which insulin pump to get and spent time researching them, you are a badass.

If your kitchen counter looks like all of our kitchen counters at days end, you are a badass.

If you yourself are Type 1, and you are raising a Type 1, you are such a badass.

If you have cried tears about your child's Type 1 diagnosis, and then dried them and moved on, you are a badass.

If you have ever been awake in the middle of the night, checking blood sugars, and decided to blog, you are a badass.

If you use EMLA cream on your child because that is what they need, you are a badass.

If your child lays down to change their pump site, because that is what they need, you are a badass.

If every day, you fight for what your child needs, their diabetic care and do what needs to be done, you are a badass.

If your child relies on you to change their pump site, because that is where they are at, you are a badass.

If your child needs to hold your hand, or hug you, or cry during their pump site change, and you recognize that, understand and provide a hand, a body or a shoulder on which to do so, you are such a badass.

If you encourage your child to do it themselves, when they are ready, in their good ole time, knowing, (much like the old they-won't-wear-diapers-to-college-saying), that they will not attend college with you changing their sites, you are a badass.

If you, every day, wake up, to do it all again, you are a badass.


I know there are tons more of you out there. Badass D-Mamas.
Tell me some more that you know. Provide the link in the comment section with your comment.

We should celebrate that WE are the badasses.

Friday, September 30, 2011

Diabetic Party Mix






And for your entertainment on a Friday...
Grace moving and dancing to "Twist My Hips'

(There are only 47 more movies like this one on my Photo Booth. Dear Lord.)

Happy Friday everyone!



video



Tuesday, September 27, 2011

Apidra: The Smackdown

Oh Apidra, how I love and loathe thee.

About five weeks ago I switched Grace over from Novolog to Apidra in her OmniPod insulin pump. And things went swimmingly. Highs were coming down faster, we were not seeing a high postprandial spike, and it really seemed to work faster for Grace. I liked it. I saw less insulin being used more productively for her. I changed basals, I:C ratios and correction factors, and all was well. Honestly, all was well for about 3-4 weeks.

Until this happened.

And yesterday happened.

Quick synopsis - I realized that Grace may need to change her Pod every 48 hours, because of this issue with Apidra. It was literally conking out at 48 hours in the Pod. Not consistently and not every time, but it's like waiting for the floor to drop out from underneath you. It's like playing Tower of Terror with the pump. Honest, that's what it feels like to me!



This was not sitting well with Grace. She wanted the full three days out of her pump sites and who can blame her? The damn thing hurts when it goes in! I wanted that too, as we got a full three days, and sometimes a few bonus hrs, out of each Pod with Novolog. I told her of my new plan, that we would keep our eyes peeled at the 48 hour mark, and when the numbers started to skyrocket after 48 hours, we would change it. Maybe we would get three days out of a Pod, it had happened before with Apidra. That was our game plan, but really, why is watching your child like a hawk for every hour after the two day mark any kind of rational diabetes management, for anyone frankly?!

Sorry for the little sidetrack...

Which brings us to yesterday.

Grace woke up at a beautiful 125. The magic 48 hour mark was at 12:30 pm.
10:30 am classroom check - 210/190. Hmmmm, little high, suspicion begins.
11:45 am lunch check - 205. OK, well she should not have gone UP since the correction for the 190 happened an hour ago and she's had no food since breakfast
3:30 pm - 410. Crap. Recheck of 388. Double crap. Ketones of .3

I look into the logbook and it hits me. The bewitching hour of 48 hours is past, 3 hours past. That bewitching hour would have been at 12:30 pm today.

 It's almost like the Apidra turns to water in her pump after 48 hours.

We change her pump site, and I use the newly opened Apidra, the same vial that I filled this pump with. I attempt a valiant correction of 2 units through her pump, based on the 388 reading. I give her a shot of 1 unit in her arm, from the vial of Apidra, frankly, to prove the point and see if this is really how it goes.

I check 15 minutes later and she is 407. Four frickin oh seven. That is UP!
It's like trying to stop the freight train by sticking your foot out the train door and dragging it on the ground, oh, while wearing flip flops. Nothing good is going to come of it.

I pull Chuck in from outside and say, we need to convene the team here. What's our game plan?
We agree, check in over the next hour and if she has not lowered by at least 30 points, we pull the plug on this pump. We change her site, and we do it with Novolog.

Did I mention this was all happening at dinner time and Grace is starving. I will not let her eat. I give her a mozzarella cheesestick to hold her over. and a piece of chicken. Oh and two slices of ham. And Grace is crying. Cause it sucks to be 388 and climbing. I can SEE it in her, she is not herself.

The next reading? 429.
My friends, that is NOT 30 points lower.

The next reading? 402

The next reading? 399
This is one hour after the correction through the pump AND the arm dose.

Plan goes into action.

One Pod filled with Novolog. Dose of 1.0 unit through the new site. One dose of 1.0 unit given by injection in her arm.

Go to work Novolog, go to work.

30 minutes later... 293
1 hour later... 168
2 hours later... 74
3 hours later... 59
Suspend for 30 minutes and a juice and 2 tabs later... 101

So, now the question is - did some of the Apidra bring her down at all or is this all the Novolog? All I do know is that for close to 3 hours, Apidra did not budge her, at all. It's like it wasn't even being dosed to her. A few thoughts - was she climbing so high that I was just slowing down the high by the dose through the arm, but clearly it wasn't enough to move her down? Did the pump conk out and only the 1.0 unit of Apidra through injection work? Is heat affecting Apidra - her tummy site is a warm place for it. Or was this coming down from the high the work of the new pump filled with Novolog and the 1.0 unit of Novolog through her shot?

I have talked with others about Apidra in their OmniPod. Some are doing great, no problems at all. Some are experiencing the same issue as us - the 48 hour mark spells doom for Apidra in the Pod.

For now, I am out of the ring in the match with Apidra. It's back to Novolog for us for a little bit, until I have the courage to try Apidra again.

Friday, September 23, 2011

Oh Blog, how I have neglected thee!


This is how I feel, except I don't even hardly Twitter!
I have been ultra-busy lately.
I am behind on blog reading, commenting and obviously writing.
Hoping to change that this weekend.

Some upcoming posts...
...scars
...being a badass (hee hee hee)
...logging numbers and this damn logbook


Happy Friday everyone!

Saturday, September 17, 2011

Penny & Grace's 30 - Invisible Illness Week

Invisible Illness Week - 30 Things Meme
There have been such great ones out there - Kerri, Abby, JonahMeri and Reyna for starters. It only felt right to join in. I hope others do too.

1. The illness I live with is: Type 1 Diabetes (ok, I live with it, but Grace LIVES WITH it)
2. I was diagnosed with it in the year: 1999. January 9, 2009 to be exact, at about 2 am in the morning.
3. But I had symptoms since: About two weeks before Grace's diagnosis - lots of water drinking, hunger like you wouldn't even believe and her size 5 jeans still fit her just before Christmas, something I was surprised at, but pushed to the back of my mind as a growth spurt. 
4. The biggest adjustment I've had to make is: For me, it's the constancy of it, the constant thought in the back of my mind of thinking about it 24/7/365. I often tell people this tale  - You know with autism, and my oldest daughter, I could take a day off from the therapies, the interventions, the never-ending of it all. I could plop her in front of the TV when she was 3 and literally take the day off. And I admit it, I did that a few times, cause I needed my sanity and I would have lost it otherwise. She was still gonna be autistic whether she watched a day of TV or not. I could take off. With diabetes, I cannot. There is no day off from it. 
For Grace, I would say the biggest adjustment is not being so carefree, as much as I promote it with her. Being able to just go with friends to the park, walk to the store, be invited to the pool - they all take advance warning most of the time and planning on both our parts. Some of the spontaneity is gone and if there is one thing my girl loves is spontaneity. I feel bad about that on many occasions.
5. Most people assume: That diabetes can be 'controlled' and that all I do is program insulin into her pump and voila! we have 'control.' Oh, if only it were that easy, right?!
6. The hardest part about mornings is: Not asking her to test the first thing in the morning. I stopped about a year ago, knowing that it shouldn't be the first thought in the morning. Ever since, I ask her about school, the day ahead, and our conversation doesn't revolve around diabetes. 
7. My favorite medical TV show is: Oh gosh, I don't watch that much TV at all, I can't even name a medical TV show! But I tell ya, put on an episode of Hoarders and I am all over it like white on rice. Makes me feel my house is clean and that I am organized.
8. A gadget I couldn't live without is: Her OmniPod, cause it's her pump and her meter. If the thing cleaned up after itself, I might have to marry it.
9. The hardest parts about nights are: Gee, let me think, this one is easy. It's the worry. The worry that she will have an nighttime low that I will not catch. The worry that she will not wake up. The 2 AM check each night reminds me of the constancy of this disease. And often, when I lay my head back down, I cannot go back to sleep. My mind starts working and worrying and listing and thinking of things to do. 
10. Each day I take 1 pills and 0 vitamins: OK, is it weird that I don't take any medicines at all, I hate to even take Advil if I have a headache? I think the body heals itself, I really do. So, no meds for me. And Grace doesn't take any vitamins or pills. Insulin is her drug of choice.
11. Regarding alternative treatments: None for Grace so far, in terms of 'treatment' for the D, other than a constant flow of insulin. I am a believer that healing and treatments come in all forms. I like to think I am open to other ways of helping her should she need it, and the help ay not always come through a medical professional. I learned this through my oldest, who was GFCF (gluten and casein free) for 5 years when she was diagnosed with autism at age 2. The medical professionals looked down on it, but I knew it worked. My girl stopped screaming and flapping and stimming and didn't have red cheeks for the first time in her life. Alternative treatments like the GFCF diet I believe saved her from a progressive slide down into severe autism. So, yes, I am a believer in help in all forms.
12. If I had to choose between an invisible illness or visible I would choose: Well, we have both here in this family - autism and diabetes - so I don't have to choose, so there!
13. Regarding work and career: I left my wonderful teaching job, a position I held for 21 years, when Grace was diagnosed in January 2009. It was hard, emotionally, mentally and financially to leave it. I knew we didn't have anyone else to care for her. I did what I had to do and I don't regret it. I do go through times where I am extremely sad I am not using all my skills in this world, but they are shortlived and they pass. Grace needs me here and now and that is what is important. But I tell ya ladies, I was one hell of a good teacher. Some day, I will head back.
14. People would be surprised to know: That I consider our lives and our family very normal. And that, I admit it, I have a food scale, but I don't use it. Now I have 'outted' myself. Crap.
15. The hardest thing to accept about my new reality has been: That Grace may have a shortened life because of diabetes. That she may have complications, as hard as we work at keeping her numbers in range, they may still come. I look at her and want her to be 'a healthy grandmother' is what I always tell her, but the reality is, she may be an older person with complications that diabetes bring, no matter what we do. That is pretty hard to accept when I think about it.
16. Something I never thought I could so with my illness that I did was: Go to DisneyWorld with a newly (2 months in) diagnosed child with Type 1 diabetes and a child with autism. We did, we had a grand time, memories were made and it made us stronger as a family. My husband and I looked at each other on the plane ride home and said 'We can do anything now.' 
17. The commercials about my illness: Just once I want to see a BG meter on TV read '374' or '42.' The numbers on the meters - the elusive 104, always just make me a little ticked off.
18. Something I really miss doing since I was diagnosed: Being able to just pick up my purse and head out the door with the kids, without the 10 lb bag of supplies that need to accompany us. Sometimes I feel like a pack mule.
19. It was really hard to have to give up: Sleep. Definitely 8-10 hours of sleep tonight, compared to a 4 hour chunk, then a 2 hour chunk.  
20. A new hobby I have taken up since my diagnosis is: Blogging and the DOC baby!
21. If I could have one day of feeling normal again I would: Go to the beach, all day, with no supplies other than a chair and a boogie board and not worry about what time we will eat or what time we will come back. Grace says she would eat anything she wanted to, all day long and not once tell me about it.
22. My illness has taught me: That Grace is the most resilient kid I know. Besides all of your kids, they are also the most resilient kids I know too. It has taught me once again, that each day we have on this wonderful earth is a blessed one. That I should never take it all for granted. It has taught me how much we are loved.
23. Want to know a secret? One thing people say that gets under my skin is: When other people ask me if I have the diabetes 'under control.' It's like trying to control the ocean, or trying to herd cats. No, frankly, I attempt 'control' but often, the diabetes runs me over.
24. But I love when people: Connect with Grace about her diabetes. When she meets other Type 1s and they flash pumps or compare meters, or just talk the D talk. Grace feels a connection and so do I. I think 'These are my people!'
25. My favorite motto, scripture, quote that gets me through tough times
"Tell me, what is it you plan to do with your one wild and precious life?"
~Mary Oliver
One go round on this sweet planet. One chance to raise these kids. One chance to do this diabetes right. One chance to go here, do this, do that. Spend it in despair or glory, time is gonna pass anyway. Choose joy and happiness each time. Choose to do something glorious with your life. When times get tough, I think of the choices I have and it always comes back to the choice to be happy.
26. When someone is diagnosed I'd like to tell them: That it will be alright, you will find your 'new normal' and believe it or not, you will laugh again, have good times with your kids and you will find support for caring for a child with diabetes. I wish someone had said these things to me while I was in the hospital. 
27. Something that has surprised me about living with an illness is: How many doctor appointments we go to and how, when someone truly understands your path, how joyous that can be. Whether it's a doctor who shows compassion and not judgement, to a nurse who takes the time to talk to Grace about something other than diabetes, I am always heartened that people understand we are more than our illness. I am grateful each and every time we meet a kindred soul who understands our journey may be hard.
28. The nicest thing someone did for me when I wasn't feeling well was: Grace would say that it was her friends who came to the hospital and brought her presents of arts and crafts to do. And that they came, but were too young to come up to her floor, so instead, their parents brought them to the parking lot, and there they stood, waving to Grace while she looked at the window of her floor. They came to see her, and see her they did. It brought tears to my eyes it was so very kind.
29. I'm involved with Invisible Illness Week because: We are here to learn from each other - whether it be about diabetes or life. I want to learn more about how people cope, so I can help Grace cope. I want to let others know we are out here, doing our best and living our lives. 
30. The fact that you read this list makes me feel: Honored. Thank you for taking the time to learn something about Grace and I. 

Monday, September 12, 2011

Saying I'm Sorry

This is the story I began to write last night, at 2 am, sitting in my daughter's bedroom as she slept.
I completed it this morning.

I think I just want to cry. It would feel better, to cry about this, than to sit in my daughter's bedroom and check her blood sugar every fifteen flipping minutes and see numbers that all start with two.

Since 8 pm last night, here's the numbers roundup:
8 pm 244
9 pm 260
10 pm 252
10:30 pm 282 Pod change to arm
11 pm 272
11:30 pm 276
12 am 285
12:30 am 277 Pod change with NEW Apidra
1 am 291
1:30 am 265
1:45 am 272
2:30 am 242

THOSE ALL LOOK LIKE THE SAME NUMBER!!!!!!!!!!
I mean, you know what DMamas, I know meter accuracy, 282 is the same as 275!


Despite boluses ranging from .05 to .30 AND temp basal increases of +30% for hours.
WHAT THE HECK???

And Grace doesn't hang in the 200s. When she is that high, I correct and she comes down.

OK, so I changed her Pod to her arm at 10 pm. No problem. From the same just-a-bit-left Apidra bottle. Mistake, I think that was. I should have cracked open a new spanking new bottle of Apidra and roundly said 'Cheers my friends!'

It is finally at 1:30 am that I realize this is what I should have done. Why did it take me over 5 hours and readings that did not change, despite bolus after bolus, to actually DO the one thing I knew would help her. Sleep deprivation? I don't know, but last night I felt so very lost. I was so very tired.

And Grace was awake until about 11 pm through it all. I sat at the edge of her bed, my iPad in hand, desperately trying to stay awake and asking Grace to try and sleep, that I would take care of it, her job was to rest.

And I said some angry things last night. I cursed the damn insulin. I cursed the Pod changes.
Not cursed like sailor-cursed, but cursed them through saying -
'This is ridiculous...What the hell is wrong with this?...I cannot believe this... I will never get to sleep... I am so very tired..."

And Grace heard me saying it.

And I profoundly regret it. It's even hard to write that I said those things in a semi-awake 9 year old's bedroom, one who didn't ask for diabetes.
One who just wanted their Mom there, to make it all better.

Right around 11:45 pm, Grace whispers to me at the edge of the bed. She is about to fall asleep.
"Thank you for helping me Mom."

And I start to cry. I tell her that "No, no, Mommy is always here to help you through, no matter what. I will stay awake for days if that is what it takes. I don't mind Grace, it's just that I am so very tired and when Mommy is tired she says things she feels inside, instead of just keeping it to herself. But Grace, you are so very welcome. Mommy is so very sorry I said those things. I love you honey."

And I went to bed, finally, at 3 am, with a 179 BG and a +20% temp basal set for the next 2.5 hours.

And I went to bed with a heavy heart.

Thursday, September 1, 2011

Diabetes Art Day - YOU are Our Sun


Thank you Lee Ann!


Diabetes affects people all over the world.
There isn't a continent that doesn't have a Type 1 person on it.
So, next time you feel alone, remember, you, by far, are not.



Diabetes can also bring gifts to this life. Unexpected gifts. 
Things you didn't see before, you see now.


Diabetes can color your world. 
It brings both sun and rain.
I know one thing that has brightened our world - the DOC.
You, all of you, change the way I think about each day.





DOC - this is for you. I hold you up, like all of you hold Grace and I up each and every day.
Have I said thank you lately?
Thank you.



As I made this, each time I inserted a used night-time test strip into the styrofoam ball, I started to say all of your names - all the people I know through the cyber-space DOC. I blessed each and every one of you - Kelly, Kerri, BSparl, Scott, George, Reyna, Joe, Hallie, SweetPea, Wendy, Sugar, Tracy, Steve, Lia, Conor, Delaney, Lily, Heather, Meri + 3 boys, Lorraine, Caleb, Lexi, Justice, Lee Ann, Karen, Wil, Hannah, Laura, Nate, Haley, Scott, Arden, Leighann, Q, Pam, Grace, Joanne, Elise, Jen, Addison, Nicole, Cara, Amy. Kim, Mike, Denise, Bean, Tracy, Matthew, Jules, Frank, Cherise....I could go on and on, and I did, through each push of the tiny test strip into the ball. 

And it hurt my fingers. And I kept going, cause my gal Grace keeps going every day. Grace created the 'flower' ball in the pictures above and as she did, she said her fingers hurt too. I reminded of what I tell her when things get rough 'Just do it.' And we did, together.