'What the hell did you have to eat that you are 354???'
'Two brownie little cupcakes in class. It was M's birthday. I dosed 10g each, Mom!'
'Honey, they are at least, at the very least, 20-25g each.'
'I'm sorry, Mom, it's all my fault.'
And she cries. And I am heartbroken. The very things that came out of my mouth just then were things I never say, and I said them. So, there goes the 'never say those things' statement, right out the window. I was tired, up all night with a 12 AM high, I worked all day, it's 4:30 PM and nary a dinner idea in sight. Homeworks to do, showers. It's been a loooong day. And this is the way I'm bringing it to a close.
'OK, I will get you down. And you are due for a Pod change, so we have to change that too.'
And through tears, we change a Pod, deal with a high and figure out what she can eat, cause she is hungry and 354 and climbing. She will hit a 394 before we start to see the downward descent.
And I said the very things that I admonish myself for even thinking. I say them. To her. And they hurt her. She didn't ask for diabetes. She just wanted to eat a flipping brownie cupcake with her class.
I should have told her I was proud of her for remembering to dose. I should have said that I understand, or try to, that it's hard to be a part of the party, yet run for your diabetes kit. I should have asked if she feels shitty with a BG of 354.
I say all those things as we lay in bed later. And I say I am sorry, sorry, sorry, for being angry with the 354 BG.
And my ever-loving girl forgives me. And she holds my hand. And she is the one who understands. And looks into my eyes and says it will all be OK.
Friday, January 25, 2013
Friday, January 18, 2013
Dexcom G4 Spot-On
Ever since Grace got her Dexcom G4, honestly, it has been spot on for her blood sugar readings. Oh sure, there are moments here and there - a 185 BG finger stick compared with a 150-ish Dexcom reading, but nothing earth-shattering in terms of being off. It really does stay pretty darn close to her actual BG via finger stick.
And the adhesive, for Grace, is really sticking. I use SkinTac just around the area where the adhesive will lie, but not over the spot where the insertion will happen. That thing sticks. Some edges come up here and there, and I just trim them off as they happen.
This current Dex is on Day #14 and still going strong.
And the adhesive, for Grace, is really sticking. I use SkinTac just around the area where the adhesive will lie, but not over the spot where the insertion will happen. That thing sticks. Some edges come up here and there, and I just trim them off as they happen.
This current Dex is on Day #14 and still going strong.
Wednesday, January 9, 2013
Happy 4th Diaversary, Grace!
Year Four
Can you believe it? Four years with diabetes. I know, not a huge amount of time, but in our lives, and in Grace's life, it IS huge. I feel like I almost don't remember a time before we did all this diabetes stuff. Surely I do, I remember the baby years, the toddler years, the preshool years. And I do remember it. It just seems so far away I suppose.
But I'm not sure Grace remembers what her life was like before the D. That's some serious stuff, therapy-worthy, if you ask me. Yep, that's what four years does to someone when they are diagnosed at age 6. Just two more years and she will have had it for half her life.
We are in a different place with D these days. My girl is an independent soul. Oh, you noticed, didn't you? And the independence runs right through the D too.
'Mom, I'm taking my D kit, going to S's house. Be back later.'
'Mom, can I go for a walk around the block? Can I roller skate? Ride my scooter? I have some tabs in my pocket.'
'Mom, I got an invite for a sleepover for next week! Can I go?'
And she does it all. Often times without me. And that is a great thing. Just what I have aimed for all along - a girl who is confident, capable, able, makes decisions on her own, comes back to check in and consult, and rolls along with it all. Damn if I didn't actually get there in the pre-teen years with this girl.
It's hard to see some of the end game when you are in the midst of 6 and 7 and 8 year old care. But before you know it, it's upon you. They grow up. They start to do what has been done for them all this time. She temp basals, makes educated guesses, rolls her eyes at high carb meals served elsewhere, shouts out carb counts across tables, SWAGs like nobody's business. Just like I did all this time.
And there are times, just like in anyone's life, that she just wants to give it all up. She just wants to be the same as everyone else. And I stand there and ask her if she would like to hand it over to me for a few hours, a day, a morning or a night. Sometimes she stands her ground - 'No Mom, I got it, it's OK' and sometimes she readily hands me the whole thing 'Yes, please, just for a few hours.' And it's mine then, even though it really ever isn't. But I drive the D while she takes a break. And then she takes the reigns again, having slept, or not thought about BGs for a while.
Year Four rolls on. It will roll into 5, 6, 7...10...15...30... 50, God willing.
Year Four is about being herself with D. Her glorious, shining self.
Monday, December 31, 2012
2012 - A review
My sweet Lord, it's been a while since I blogged, huh?! I always have these great blog posts running around in my head, and before you know it, they have left my head, never to return. That will teach me not to have a paper and pen with me at all times. Or at least my iPad.
2013 will be a commitment to blog more. I hope. OK, I will try. Then again, as Yoda said, 'There is no try, only DO.' So, indeed, I will DO more blog posts. If not for your sanity, then mine.
For now, there is a beginning line from each month of blog posts in 2012. The blog post from that month that I found most intriguing. Click on the month if you would like to read the post in it's entirety.
January
'It's been three years since Grace was diagnosed.'
February
'Grace has the stomach bug.'
March
'At the close of the CWD Technology conference in Conshohocken, the speaker, Tom Karlya - aka 'The Diabetes Dad - spoke about perseverance, hope and the power of one.'
April
'The hardest lesson I have learned about Grace having diabetes is that it's not MY diabetes, it is hers.'
May
'Grace is a do-er. I mean, the girl DOES things. All the time. In full-on speed.'
June
'Grace started a summer dance class this past week.'
July
'9 rolls into 10. And suddenly we are in double digits.'
August
'31. Thirty one.'
September
'Grace has wanted to walk home from school since first grade.'
October
'It's the sleepovers that get me, I think. They let my brain run wild.'
November
'Grace has an annual blood draw, usually in November.'
December
'There was a Grace McDonnell, age 7, in that elementary class at Sandy Hook Elementary School in Newtown, Connecticut. And I thought of my Grace, and other Graces we know, when I saw her name.'
Here's to a wondrous 2013 for us all.
2013 will be a commitment to blog more. I hope. OK, I will try. Then again, as Yoda said, 'There is no try, only DO.' So, indeed, I will DO more blog posts. If not for your sanity, then mine.
For now, there is a beginning line from each month of blog posts in 2012. The blog post from that month that I found most intriguing. Click on the month if you would like to read the post in it's entirety.
2012 Blog Posts
January
'It's been three years since Grace was diagnosed.'
February
'Grace has the stomach bug.'
March
'At the close of the CWD Technology conference in Conshohocken, the speaker, Tom Karlya - aka 'The Diabetes Dad - spoke about perseverance, hope and the power of one.'
April
'The hardest lesson I have learned about Grace having diabetes is that it's not MY diabetes, it is hers.'
May
'Grace is a do-er. I mean, the girl DOES things. All the time. In full-on speed.'
June
'Grace started a summer dance class this past week.'
July
'9 rolls into 10. And suddenly we are in double digits.'
August
'31. Thirty one.'
September
'Grace has wanted to walk home from school since first grade.'
October
'It's the sleepovers that get me, I think. They let my brain run wild.'
November
'Grace has an annual blood draw, usually in November.'
December
'There was a Grace McDonnell, age 7, in that elementary class at Sandy Hook Elementary School in Newtown, Connecticut. And I thought of my Grace, and other Graces we know, when I saw her name.'
Here's to a wondrous 2013 for us all.
Sunday, December 16, 2012
For my other Grace
There was a Grace McDonnell, age 7, in that elementary class at Sandy Hook Elementary School in Newtown, Connecticut. And I thought of my Grace, and other Graces we know, when I saw her name.
It could have easily been my Grace, or your child. And there but for the grace of God, go I.
A wonderful writer whom I admire, from Philadelphia, Dan Gottlieb, wrote about the tragedy. He is much more eloquent than I. And he included a poem from Ellen Bass.
Amen, and God Bless Grace.
In the wake of the mass murder in a Connecticut elementary school, several people suggested I write something. At first I thought I would talk about how you could explain this to your children; you know the standard psychologist bullet points.
But all of that seemed artificial in the wake of this devastation. The mother of a four-year-old boy told me she cried all day Friday. I said in response t
It could have easily been my Grace, or your child. And there but for the grace of God, go I.
A wonderful writer whom I admire, from Philadelphia, Dan Gottlieb, wrote about the tragedy. He is much more eloquent than I. And he included a poem from Ellen Bass.
Amen, and God Bless Grace.
In the wake of the mass murder in a Connecticut elementary school, several people suggested I write something. At first I thought I would talk about how you could explain this to your children; you know the standard psychologist bullet points.
But all of that seemed artificial in the wake of this devastation. The mother of a four-year-old boy told me she cried all day Friday. I said in response t
hat the whole country is crying. Our hearts are broken. Sure, our minds get active with a million thoughts about what happened. But the great pain is because our hearts are broken. So what can be done about broken hearts?
Love deeply and gently what is in great pain. Hold your broken heart tenderly. You don't have to do anything, just feel and allow your heart to cry about this reality of our lives.
Love what is most vulnerable; your children, those children, all children. And hold these tender hearts gently with deep love and painful knowledge that all of your love cannot make them less vulnerable.
As your heart heals, as it will, there will be scar tissue with the wound is. That scar tissue is a reminder to love what is most vulnerable.
Award-winning poet Ellen Bass also tells us how to heal our hearts and the world.
Love deeply and gently what is in great pain. Hold your broken heart tenderly. You don't have to do anything, just feel and allow your heart to cry about this reality of our lives.
Love what is most vulnerable; your children, those children, all children. And hold these tender hearts gently with deep love and painful knowledge that all of your love cannot make them less vulnerable.
As your heart heals, as it will, there will be scar tissue with the wound is. That scar tissue is a reminder to love what is most vulnerable.
Award-winning poet Ellen Bass also tells us how to heal our hearts and the world.
- Dan Gottlieb
Pray for Peace
Pray to whoever you kneel down to:
Jesus nailed to his wooden or marble or plastic cross,
his suffering face bent to kiss you,
Buddha still under the Bo tree in scorching heat,
Yahweh, Allah, raise your arms to Mary
that she may lay her palm on our brows,
to Shekinhah, Queen of Heaven and Earth,
to Inanna in her stripped descent.
Hawk or Wolf, or the Great Whale, Record Keeper
of time before, time now, time ahead, pray. Bow down
to terriers and shepherds and siamese cats.
Fields of artichokes and elegant strawberries.
Pray to the bus driver who takes you to work,
pray on the bus, pray for everyone riding that bus
and for everyone riding buses all over the world.
If you haven't been on a bus in a long time,
climb the few steps, drop some silver, and pray.
Waiting in line for the movies, for the ATM,
for your latté and croissant, offer your plea.
Make your eating and drinking a supplication.
Make your slicing of carrots a holy act,
each translucent layer of the onion, a deeper prayer.
Make the brushing of your hair
a prayer, every strand its own voice,
singing in the choir on your head.
As you wash your face, the water slipping
through your fingers, a prayer: Water,
softest thing on earth, gentleness
that wears away rock.
Making love, of course, is already a prayer.
Skin and open mouths worshipping that skin,
the fragile case we are poured into,
each caress a season of peace.
If you're hungry, pray. If you're tired.
Pray to Gandhi and Dorothy Day.
Shakespeare. Sappho. Sojourner Truth.
Pray to the angels and the ghost of your grandfather.
When you walk to your car, to the mailbox,
to the video store, let each step
be a prayer that we all keep our legs,
that we do not blow off anyone else's legs.
Or crush their skulls.
And if you are riding on a bicycle
or a skateboard, in a wheel chair, each revolution
of the wheels a prayer that as the earth revolves
we will do less harm, less harm, less harm.
And as you work, typing with a new manicure,
a tiny palm tree painted on one pearlescent nail
or delivering soda or drawing good blood
into rubber-capped vials, writing on a blackboard
with yellow chalk, twirling pizzas, pray for peace.
With each breath in, take in the faith of those
who have believed when belief seemed foolish,
who persevered. With each breath out, cherish.
Pull weeds for peace, turn over in your sleep for peace,
feed the birds for peace, each shiny seed
that spills onto the earth, another second of peace.
Wash your dishes, call your mother, drink wine.
Shovel leaves or snow or trash from your sidewalk.
Make a path. Fold a photo of a dead child
around your VISA card. Gnaw your crust
of prayer, scoop your prayer water from the gutter.
Mumble along like a crazy person, stumbling
your prayer through the streets.
by Ellen Bass
Pray for Peace
Pray to whoever you kneel down to:
Jesus nailed to his wooden or marble or plastic cross,
his suffering face bent to kiss you,
Buddha still under the Bo tree in scorching heat,
Yahweh, Allah, raise your arms to Mary
that she may lay her palm on our brows,
to Shekinhah, Queen of Heaven and Earth,
to Inanna in her stripped descent.
Hawk or Wolf, or the Great Whale, Record Keeper
of time before, time now, time ahead, pray. Bow down
to terriers and shepherds and siamese cats.
Fields of artichokes and elegant strawberries.
Pray to the bus driver who takes you to work,
pray on the bus, pray for everyone riding that bus
and for everyone riding buses all over the world.
If you haven't been on a bus in a long time,
climb the few steps, drop some silver, and pray.
Waiting in line for the movies, for the ATM,
for your latté and croissant, offer your plea.
Make your eating and drinking a supplication.
Make your slicing of carrots a holy act,
each translucent layer of the onion, a deeper prayer.
Make the brushing of your hair
a prayer, every strand its own voice,
singing in the choir on your head.
As you wash your face, the water slipping
through your fingers, a prayer: Water,
softest thing on earth, gentleness
that wears away rock.
Making love, of course, is already a prayer.
Skin and open mouths worshipping that skin,
the fragile case we are poured into,
each caress a season of peace.
If you're hungry, pray. If you're tired.
Pray to Gandhi and Dorothy Day.
Shakespeare. Sappho. Sojourner Truth.
Pray to the angels and the ghost of your grandfather.
When you walk to your car, to the mailbox,
to the video store, let each step
be a prayer that we all keep our legs,
that we do not blow off anyone else's legs.
Or crush their skulls.
And if you are riding on a bicycle
or a skateboard, in a wheel chair, each revolution
of the wheels a prayer that as the earth revolves
we will do less harm, less harm, less harm.
And as you work, typing with a new manicure,
a tiny palm tree painted on one pearlescent nail
or delivering soda or drawing good blood
into rubber-capped vials, writing on a blackboard
with yellow chalk, twirling pizzas, pray for peace.
With each breath in, take in the faith of those
who have believed when belief seemed foolish,
who persevered. With each breath out, cherish.
Pull weeds for peace, turn over in your sleep for peace,
feed the birds for peace, each shiny seed
that spills onto the earth, another second of peace.
Wash your dishes, call your mother, drink wine.
Shovel leaves or snow or trash from your sidewalk.
Make a path. Fold a photo of a dead child
around your VISA card. Gnaw your crust
of prayer, scoop your prayer water from the gutter.
Mumble along like a crazy person, stumbling
your prayer through the streets.
by Ellen Bass
Wednesday, December 5, 2012
Dexcom G4 and the G-mess
Grace has worn the Dexcom SevenPlus since late September. Completely paid for by her insurance. Sensors and all. They approved it not through her DME (Durable Medical Equipment) benefit, but through her prescription benefit. I really don't care if the approval comes through her vision or dental benefit, hey, she got approved! We were thrilled.
All was well, and even better, when Dexcom alerted us that since we received our SevenPlus in late September, we would be eligible for the free upgrade to the Dexcom G4, that sweet piece of technology that everyone is raving about. Oh, the range! Oh, the colored screen! Oh, the alerts! I finally actually lucked out and had some luck in the diabetes game - a free upgrade to the latest and greatest. Yes, sign us up.
I looked forward to the arrival of G4 around the end of November.
And sure enough, Dexcom delivered a pretty pink Dexcom G4 to our doorstep a week ago. What a beauty. We were so very excited. All I needed to do was call our supplier and order the new sensors, right?! Right.
I called. Hmmmm they said, we tried to process the G4 sensors, and they are denied under her DME benefit. We will try the prescription benefit. Hmmm, not approved through that either.
Called our Dexcom rep, who has been nothing short of remarkable and patient and knowledgable. No, she says, they ARE approved, I know it. She tries to call. Nope. Not approved. And processing now through DME. What the what???!!!
OK, we will just fill out a Certificate of Medical Necessity and write a short note, and get the endo to sign it, right?! Right. We are going in for our three month endo appointment anyway, so why not. Our endo signs off on the CMN, and the short summary, to our health insurance company.
I got a call two days ago from our endo, who gives me an update. And it will shock you, same as it shocked me. The secretary at our endo's office actually starts to laugh as she tells me. Not cause it's that kind of funny, it's more like incompetent funny than anything else.
Grace's health insurance is denying her the G4 sensors, because they have no record of her having a Dexcom CGM at all. Nothing. Not one receipt. Not one payment. They have no idea what we are talking about, because, according to them, they have paid for NOTHING. She does not have a CGM.
I call them and talk to the person who called our endo's office. I start to chuckle and say, you know, Grace is right now, wearing the CGM that YOU paid for. She has a receiver, transmitter and sensors, two 8-pack shipments so far of sensors. Silence on the end of the line. I tell them, I assure you, the insurance company you work for paid for them, in full.
They have no record of payment for her CGM. They have not one receipt they are telling me.
And we still have no G4 sensors.
But we do have one pretty pink receiver sitting on our dining room table.
I think the ball is in my court.
Game on, health insurance company.
All was well, and even better, when Dexcom alerted us that since we received our SevenPlus in late September, we would be eligible for the free upgrade to the Dexcom G4, that sweet piece of technology that everyone is raving about. Oh, the range! Oh, the colored screen! Oh, the alerts! I finally actually lucked out and had some luck in the diabetes game - a free upgrade to the latest and greatest. Yes, sign us up.
I looked forward to the arrival of G4 around the end of November.
And sure enough, Dexcom delivered a pretty pink Dexcom G4 to our doorstep a week ago. What a beauty. We were so very excited. All I needed to do was call our supplier and order the new sensors, right?! Right.
I called. Hmmmm they said, we tried to process the G4 sensors, and they are denied under her DME benefit. We will try the prescription benefit. Hmmm, not approved through that either.
Called our Dexcom rep, who has been nothing short of remarkable and patient and knowledgable. No, she says, they ARE approved, I know it. She tries to call. Nope. Not approved. And processing now through DME. What the what???!!!
OK, we will just fill out a Certificate of Medical Necessity and write a short note, and get the endo to sign it, right?! Right. We are going in for our three month endo appointment anyway, so why not. Our endo signs off on the CMN, and the short summary, to our health insurance company.
I got a call two days ago from our endo, who gives me an update. And it will shock you, same as it shocked me. The secretary at our endo's office actually starts to laugh as she tells me. Not cause it's that kind of funny, it's more like incompetent funny than anything else.
Grace's health insurance is denying her the G4 sensors, because they have no record of her having a Dexcom CGM at all. Nothing. Not one receipt. Not one payment. They have no idea what we are talking about, because, according to them, they have paid for NOTHING. She does not have a CGM.
I call them and talk to the person who called our endo's office. I start to chuckle and say, you know, Grace is right now, wearing the CGM that YOU paid for. She has a receiver, transmitter and sensors, two 8-pack shipments so far of sensors. Silence on the end of the line. I tell them, I assure you, the insurance company you work for paid for them, in full.
They have no record of payment for her CGM. They have not one receipt they are telling me.
And we still have no G4 sensors.
But we do have one pretty pink receiver sitting on our dining room table.
I think the ball is in my court.
Game on, health insurance company.
Saturday, November 24, 2012
Pulling the site
I think it's a bad site. I think I should pull it.
You should know that these thoughts above NEVER run through my head. I NEVER think the Pod is malfunctioning or not delivering insulin or not doing it's job. I truly believe it just works, all the time. Maybe I am just naive. But I honestly never think it's the mechanical device that screws up, I just think it's ME.
The last two days have been nothing short of messed up. And if I could curse a lot on my blog (I guess I can, I mean, it's my blog, right?! But I will spare you) there would be a heck of a lot of curse words before the 'messed up' part of that previous sentence.
And this is what went down. I think I lost my mind somewhere over the course of the last two days. I don't even know right from left, bolus from basal. Ever get lost in the game, my friends? I was lost.
Thanksgiving was fine. Bolused, a little too much I think, for the pumpkin pie, which she ended up not eating. Fine, substituted a cookie for it and all was well. Ever since then, the diabetes gods have laughed at me.
Dexcom. Up and down. Up and down. Living on a merry-go-round.
Yeah, nice little waves of food eaten, then back to 'in-range' on the Dexcom - yeah, not.
No highs or lows - yeah, not.
Penny, you should totally pull the site.
This thought again did not enter my head. Not at all. I am thinking I am screwing up big time, and maybe I am. There is something definitely wrong. I always run a 50/50 basal/bolus split, and sometimes even a 60/40. Grace uses, on average, about 31 units a day.
OK, ready to see what she used yesterday?
45.70 units!
Penny, please, for the love of all that is holy, PULL THE SITE!!!!
Nope, still gonna ignore the fact that I should pull it. I will be damned if I will pull something that I think is working. Even though it's not. Sometimes, my thinking goes south.
Penny, it is CLEARLY NOT WORKING.
You know, what if I just temp basaled the crap out of every meal? I mean, like +75% for 3 hours? Hmmm, still not budging from a 245 BG with a straight constant arrow. Even with 1.85 IOB and the increased temp basal. What else could it be, Penny? What else could it possible be???
Penny wracks her head. Bangs it on the floor. Curses the diabetes gods.
Penny, honestly, I am starting to question your thoughts processes. It is THE SITE.
THE SITE.
I REPEAT, THE SITE.
I know! Maybe I will change the site. Maybe that will help.
I pulled the site. It is pink and oozing something. One of the first times I have ever seen something like this on Grace.
OK, so I should have listened to my little diabetes-voice.
Next time, 45.70 units into the game, I will pull the site.
Carry on, folks.
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