Saturday, March 28, 2015

Dexcom Share (or not)

After a multitude of phone calls about replacing our out of warranty receiver, Grace finally got the new Dexcom Share capable CGM. It came on Thursday and by Thursday night, that little transmitter (sleeker, smaller, flatter!) was on her. I wasn't wasting any time seeing what all the fuss was about.

Grace and I have had multiple, ongoing conversations about using the Share system, which allows people that she invites to see her CGM data. At first, total resistance to the whole idea of anyone else but her seeing her numbers. TOTAL. RESISTANCE. As in, 'Mom, there is no way I would ever share my numbers with you.' Regardless of the fact that I pick up her CGM at home and look at it whenever I want. And so does her Dad. There was no way Grace was going to have HER numbers on OUR phones.

Little by little, she came around to seeing a small, tiny, probably incalculable, value to having just me and her Dad able to see her data on our phones. Just a teeny bit of opening of the door in her mind to having others help her, or look out for her. She liked the idea of having us see data during sleepovers.

She agreed to invite me, her Dad and finally, with a push from me, the school nurse, to have access. We set up the Share and she went about inviting just us three.

Then, she saw it on her phone.
And she saw that SHE was able to access her CGM data just by looking at her phone, and not at her CGM device. She said "Mom, it just looks like I am checking out something on my phone, but really I am checking my CGM!"

A - HA!
The light came on.
"If I can be a spy on my data, you and Dad can too."
Oh no.

I told you, she's a smart one, my cookie.

"But I can turn OFF data notifications to you, Dad and Mrs. L."
"Yes, honey, I am fully aware that you can turn us off. Don't even think about turning off Daddy and I. You can turn off Mrs. L while you are on Spring Break."

Grace wanted to establish some rules for the Share. I think she wants to know when and how we will be using it. She wants, above all, NOT to be bothered by us notifying her when she is high or low, that she says she will take care of it on her own. We've had plenty of conversations about it, and we have come to some agreements:

  • We will not text Grace when she is high or low. We can see it, but she will handle it.
  • Her numbers are her numbers and we shall not assume she's not taking care of herself.
  • We will not look 24/7, and we will assume she HAS dosed for everything she eats.

I agreed. She agreed. Dad agreed. We have the nurse on board to agreeing to help her take care of herself and not intervene unless she feels it's an emergency.

And just when you think it's all settled, that there are the rules by which you will all play, it all comes to a screeching halt. Grace put on Dex on Thursday, we went live with Share on Thursday night and Friday morning, she went to school. (You know where this is leading, don't you?)

Friday morning she woke up, from a little low a couple of hours beforehand, ate breakfast and dosed. Pretty usual stuff. Nothing alarming. CGM was reading 122 when she woke, and was confirmed with a finger prick. Grace went to school.

After dropping her off, I checked the Dexcom Follow App, and it read 255, with one arrow up. Hmm.  High for her, after eating. We usually don't get a spike like that with what she eats for breakfast.

About 15 minutes later, I check in again. What I see alarms me.
355 with DOUBLE ARROWS UP.
What the what???

I break the rules. I text her school nurse and ask her to please see Grace and ask her to check.
She does.
393.
THREE HUNDRED NINETY THREE.



Mrs. L brings her down to the office and she calls me at work. Her head and tummy ache. She doses 4.0u through her pump. She wants to come home. I turn around and drive back to school to pick her up. She feels lousy. We come home and I settle her on the couch. .6 ketones. I bring her water.

We say nothing about the Share App.
Until I say, "You know, I was happy I checked in with the Share, to see that you were so high. It worried me honey. I didn't mean to bother you, and I am sorry for texting Mrs. L., but I just wanted you to be safe."

Grace smiles. We might have opened the door just a wee bit more, to acceptance of others just helping you out because they love you.






Saturday, January 17, 2015

What $17,144.40 buys

There is a cost to caring for someone with diabetes. And it's big. Nothing like getting tax information ready for 2014 to make me realize exactly how much it totals.



I was compiling the list of '2014 Diabetes Expenses.' This list includes juices, glucose tabs, diabetes kits, Unisolve, SkinTac, medical ID bracelets, school kits and batteries. And yes, I save receipts on it all. Every little thing adds up when you are constantly buying this and that. And for those people who say 'well, it's only $3, or $5,' I say to you, when you spend that every week, it adds up to serious money. This is just my out of pocket costs. More on that later.

Then I got to all of Grace's prescriptions for the year. The giant stack of CVS receipts for her insulin, test strips, ketone strips, glucagon, lancets, 'prickers' and lidocaine (for insertion of her CGM).

Grace has Pennsylvania state Medicaid. It's her only insurance. She got booted from the PA CHIP program (low cost medical insurance through the state) when she, in their words, not mine, 'became too expensive.' She is at the lowest insurance for the state. Since she has Medicaid, she has a $0 co-pay on all her prescriptions. All I can say is 'Thank the Lord!' because the care she needs would have bankrupted us as a family. I have fought tooth and nail for two medicines off their 'formulary.' She uses everything, there is no waste or overage on any of her medicines or devices.

And here, in all it's glory, is what it all her medicines totaled (CVS costs as listed on script):

Novolog insulin - 3 vials a month = $342.51
Lantus insulin - 1 vial a month = 195.46
Precision ketone strips - 3 boxes a month = $138.48
Glucagon - 2 a month = $336.12
Delica lancets - 1 box a month = $9.41
Freestyle test strips - 3 boxes a month = $381.17
Lidocaine cream - 1 tube a month = $25.55

Total for one month of medicines = $1,428.70

Total for one YEAR of medicines = $17,144.40

Shocking, isn't it? This is just for her medicines she needs. This does not even include the cost of her Omnipod pods or her Dexcom CGM receiver, transmitter or sensor.

I am thankful, each and every day, that she has insurance that helps us out. That keeps her healthy and alive. It's the best money this state has ever spent.

Friday, January 9, 2015

6 years

2015 brings year six of doing diabetes. While the other years have felt 'milestone-y,' this year does not. Grace mentioned to me the other day 'You know Mom, January 9th will be six years.' The way she said it was melancholy, not with an air of the incredible to it.

Yet it is, you know, incredible. All of it is.
Maybe I'd be best to remember that about year six.

Becoming complacent with diabetes means it will come and kick you in the ass, hard. Repeatedly.
To remind you that it should be taken seriously.

I find myself floating through days, days become weeks and soon it's a month, and all is fine. We have some highs, we have some lows, but we correct and glide onto the next day. Pod changes, yeah yeah yeah, every three days. Yes, reset Dex and move on. Yeah Grace, just dose on the Dex and what it says. All the motions, but none of the feeling.

Then a day will hit us that knocks us to our knees. We were complacent about the depth of this damn disease. And all of a sudden, we are 348, or we are 37. It hits and it hits hard.

Six years. 2,190 days. And here she is.

I often tell Grace that diabetes should take a backseat to whatever she would like to do in life. Let it ride, don't let it drive. Grace, don't ever let it drive. It stinks at driving. YOU drive. You know the way. You be in charge.

A few times this year Grace had times of not wanting to do it any more. Of being fed up with all the care, the monitoring, the getting the damn PDM once again to dose for something she wanted to eat, the hurt from a cannula that feels wrong, the fingersticks. All of it, wrapped in one big bow. One never thinks it will be their child affected by depression in the midst of diabetes, but that monster is leaning in, over our shoulders. I kick it away. It doesn't obey and comes back just to look at us, daring us not to listen for a bit to what it has to say.

I can tell her I understand, but I don't have diabetes. All I can do is listen and tell her how much she is loved and care for, how much I would take it all away in an instant if I could, how brave and strong and true she is to do this, day after day after day, and how very resilient she is. And as the words leave my mouth, I pair them with my prayer that she live a long life. A very long life.

They give medals for living with diabetes 25, 50 and 75 years. Damn it, they just added the 75 year one cause people finally did live 75 years with it. Imagine that, before this time, they didn't even have a damn medal cause people didn't live that long with it. I pray she gets a 75 year medal.
She will be 81.

All of this floods me at year six. It's the year we know we are on the road for a good long time. I cannot look too far ahead with Grace, I have no idea what the road will bring to us both. We just stay in the driver's seat.

I know she is strong.
I know she is loved beyond measure.
I know she made it one more blessed year.

Happy 6th Diaversary, Grace. Only 69 more years til that medal.





You can read about our other years here:
Year Five
Year Four
Year Three
Year Two
Year One

Thursday, November 20, 2014

12 and 5.9

Endo visit and we get the big examination room in the corner. Windows all around on the 2nd floor. It feels like a fishbowl. Win for us! Grace starts to dance around the room, showing off what she's learned in dance class. Teaching me to do 'The Pelican' which involves kicking one leg up, all while throwing your hands behind you. I realize I am not good at The Pelican. Grace is though, and we laugh.

Give us the big room in the corner, and we are gonna dance, baby.

Her blood draw is good. Her triglycerides are great. Her celiac is negative. Looking good. She's grown an inch in three months. Her endo marvels at the hint of mascara she wears, asks if she's dating anyone and Grace dutifully rolls her eyes. Six years after we started this business, and who knew I would be in this room when I actually laughed about it all.

I was in this fishbowl room six years ago, with a newly diagnosed six year old. I was scared and I felt alone and I felt I could not do it. I did not even think of, or envision, a moment like this in my life. Six years from now? I didn't know if I would make it the next six days, let alone six years.

Funny how a room can bring it all flooding back.
Grace mentions it to me.

'Mom, the last time we were in this room, I was little. I remember the windows and how big the room was. And we talked about food.'

'Correct you are, my gal. We did. We talked a lot about food back then.'

And then it's over. Her remembrance of it all is that of a six year old. The food, she recalls we talked about food. I guess that's good. She doesn't say I looked scared back then. She doesn't say, 'and Daddy was with us, you remember Mom, and he looked so very sad.' She doesn't talk about how she used to scream and scream and scream when we gave her shots. Remembering some things when you six is selective. I thank God for small miracles. She remembers the food.

The nurse peeks her head in and says '5.9.' I must have looked shocked, cause she says after it. 'Really, 5.9.'

Grace looks at me. I smile. She says 'Is that good?' and she smiles. We've never gotten below a 6.0 A1C yet. 6.2, yes, Mostly we hover in the 6.4 area. I'm fine with that. I wasn't even trying for tighter control and finer tuning, yet here we are. 5.9

I tell her endo when she enters that the machine must be broken. She asks me how I do it. She tells tales of teens with 9.5, 10, 11 A1Cs and she looks worried. I tell her I spend time fine tuning, I don't let highs hang out and mostly, and here is my key, I attack night time with a vengeance.  I have the least variables at night. I can control more. I tighten the reins then. It's a huge part of her 24 hours, those 8-9-10 hours she sleeps. I try to always be in range then. Then I tell her once again her A1C machine is broken and it can't possibly be right.

I scroll through her PDM. 40% of the time we are in range (80-150), 40% of the time we are high (above 150) and 20% of the time we are low (below 80). I think, well, it's good, the 20% of the time low. And I wonder what Grace's standard deviation is. Aw hell, I'm not gonna look that up, it is what it is.

That's all I got, I say. I impart no wisdom beyond that. Her endo looks at me, 'that's it?'
'Yep, that's it. I'm afraid I haven't anything else to add.'

'You know what? I do have something else to add. This is a great room for dancing.'
And we ask her to join in.


Tuesday, November 4, 2014

Candy Exchange Meetup

Every year our local hospital, the one where Grace was diagnosed six years ago, has a Diabetes Candy Exchange. They want us to give our precious candy over to them, in exchange for other goodies. Breaks my heart to see all that beautiful candy being given away.




What I don't understand is how on God's green earth, these Type 1's give away Smarties and Nerds. People. People. People. They are among the best candy to bring up a low. They are pure sugar and they work fast. Yet I see them thrown in there among the Laffy Taffy (pull out all your teeth candy) and the unwanted Baby Ruths (no one likes those). Sad.

Many years I stick my hand right into the cans where kids are depositing the giveaway candy, and sort through it, pulling out handfuls of Smarties and Nerds. It's like Dumpster Diving for Diabetics. Sure, everyone looks at me, but I got over that about ten years ago. Look away people if you don't want to see me getting the best candy. Look away.

Alas, this year I did not Dive. The darn cans were too close to the nurses sitting at the registration table! It was even too close for me. Plus I was gonna SO embarrass Grace if I did anything like that. Like that has ever stopped me before, right? I didn't even Dive, everyone should be so proud of me. I know there were Smarties and Nerds in those cans, I just know it.

They have food, with the carb counts on them, bless their little hearts. They have gluten free food - bless them even more! No drinks though other than water. I'm not sure they believe even in Crystal Light. They also have random food on the table - a big bowl of unwrapped cheese sticks. OK, then.





The best part of the exchange is hanging with friends. When Grace was little, it was all about the activities -the arts and crafts, the face painting, the pumpkin carving, but now it's all about who she gets to see and hang with. Luckily this year, her BFF from camp could come. She's only 1 year into the D, and lives 5 minutes from our house, and we met her at camp this year, how crazy wonderful is that???

Another camp friend, the illustrious same-name Grace came too. They made a trio of blue. They communed, they chatted, they made arts and crafts together. They wore their Walk shirts, Grace even matched with her blue sweatshirt! and had their faces painted the same. They hung out.



That's the beauty of the candy exchange  - it's really disguised as a get-together for the young T1s. And a way for me to increase my candy stash for lows. That will have to wait for next year.

Oh, Else sang karaoke and Olaf came. He was delightful. His head didn't come off though. Don't ask me how I know.




Sunday, October 26, 2014

JDRF Walk 2014

Our annual JDRF Walk was today. A beautiful, bright, sunny day that couldn't have been more perfect. The mood was lighter this year. I felt it. People felt hopeful. There are so many things in the works for people with Type 1: the bionic pancreas trials, Nightscout, Dexcom Share. It's the age of invention and innovation. Technology beginning to make our kids lives better. It's the most hope we have had in a very long time.

The Walk brings about so many feelings, six years into diabetes. The newness has worn off. The daily grind has set in. Puberty has set in, and she's growing up. I am weary at times. And so is she. I look up at the sun and it feels so warm, but the wind whips my face. How fitting. The community I am in, standing among 10,000 walkers, warms me to no end. The daily grind is my wind.



She is thrilled that her BFF from diabetes camp, who lives no less than five minutes from our house at home, is here at the Walk. They hug and they tell each other they love each other. And part of me is so happy for her, to have someone she loves, with diabetes, so close to her. And I think at the same time, damn it, yet another kid. It's the yin and the yang of diabetes. Am I glad she's had it because it makes her who she is? And in the next breath I curse the very day she got it.



And we walk. We walk down the road by the river in my city. It's glorious, the sight of all these families, all these kids, supporting each other. The t-shirt slogans are funny, truthful, and make me smile. We find humor in this damn situation. There isn't one family I see during this walk having pity on their kids. They all say 'Look around you, there's a kid with diabetes just like you. Look, another one. Look, she's older and she's here. Look at her pump. Rock that Dex!' And isn't that something? In the midst of all the life altering it brings, we come together and say it's alright, cause we have each other. It fills the gas tank to go another 1,000 miles.



As we end the walk, the JDRF leaders and volunteers all ring cowbells. And we cheer as we come across the finish line. We made it, one more year.


JDRF Walk 2011
JDRF Walk 2010

Wednesday, July 30, 2014

Insulin Addict

This is Grace's 'handle' on a game app she plays. Insulin Addict.
I laughed, cause she is.

And oh, this addict uses A LOT of insulin throughout her day. She's up to about 50 units per day. She's maxed out the 150 units that I use to fill her OmniPod pod, so now I up it to about 175 units for three days.


It is what it is.
It's puberty, that is.
12 going on the preteen years.
Growth spurts, hormones, growth spurts, hormones and did I mention, the GROWTH spurts?!
Like, growing 2 inches this past year and on track to bust another inch in the next six months.
All that growing requires a lot of insulin. Both in basal and in bolus amounts.

Carb ratios that have gone from a breakfast of 1:15 to currently 1:8. Lunches are now 1:10 and dinners have just been reduced to 1:12.

It's the basal rates that make me shake as I enter them. I repeat the phrase 'She needs what she needs, these are only numbers' again and again in my head, but secretly, there is a little voice that whispers, My God, woman, that's a HECK of a lot of insulin per hour.'

I try not to listen to that little voice.

I enter new basal rates. Large ones for such a little girl.
And I know it's what she needs. And it's just a number.

Here's our current basal rates:

12a - 3a   1.35 U/hr
3a - 6a   .85 U/hr
6a - 6p   .90 U/hr
6p - 8p   1.00 U/hr
8p - 10p  1.05 U/hr
10p - 12a  1.20 U/hr

Does 12a - 3a freak you out? Well it does me.
And I still think it could be tweaked to 1.40 U/hr or even, GASP, 1.45 U/hr.

Insulin Addict.
Damn straight.