Friday, December 31, 2010

Endings and beginnings

Life and death. Beginnings and endings. Old years go and new years come. And we all go on.

My mother is 82 and in the hospital right now. She has two pulmonary embolisms and an AVM in her head. She also has a heart flutter - causing rapid heart rate (125+), high blood pressure, high cholesterol and Type 2 diabetes. She is as strong as a horse and as stubborn. Up until now, she has not been a sick woman at all. Very active, healthy, completely there in her mind. Married for 61 years. Stubborn, like I said.

But I fear her time is nearing. I am hoping and praying and sending every positive thought I have that she pulls through this. The treatment for pulmonary embolisms is blood thinning medication, we know that. The problem is this AVM, which she was born with, in her head. It cause seizures in November once and she was hospitalized for a week. No operating on an 82 year old woman with an AVM that had never caused her problems. The time she spent resting is the time they think the blood clots formed in her legs. They have traveled since, landing in her lungs. They are large.

Bleeding from a pulmonary embolism in your lungs is bad.
Bleeding in your head from an AVM is even worse.
And I cannot even write what the 'worse' is. I just cannot.

So this year ends on such a sad note for me here. As many of you know, mother and daughter relationships are tangled, in messy and various ways. And they are complicated. My mother was a wonderful mother to me and my brother and sister. I had a lovely, love-filled childhood, safe and secure. There is always the underscore though, the background music that plays while it all goes on. She is my mother and I love her dearly is what I know in my heart.

Whatever happens, I am trying in vain to accept. Death is a part of life and I know she will be in God's hands, well and whole. And that I will see her again after I pass. I am assured and blessed in that way. It's still hard to accept she won't be here with us all when her time comes.

And no one has said it has come yet. As I said - strong, stubborn, has pulled out of worse messes in her life. I will not be sad for her death while she is still alive and here.

As for you, my DOC friends, this year you have all brought Grace and I such support in so many ways. You have lifted me up when I think I cannot do this D one more day. You have made me cry and made me laugh. You have made me learn and become smarter about D. You have said 'same same' when I tell you how I feel. And you have carried me on this journey, farther than I could have gotten all by myself.

So I say to all you out there in the DOC, my D-Mamas and D-Papas,
Thank you.

To 2011 everyone - full of life, living and loving.

Tuesday, December 28, 2010

38, and it's not my age

"Mom, I feel low!"
Aren't those some of the yuckiest words in the English language?
She just tested at 9 pm at 190 and I dosed .50 units, how could she possibly be low?
But I never tell her not to test, so she does.
Thirty flippin' eight
How does that even happen?
And she is still standing. Telling me she feels a wee bit dizzy, but standing at the edge of my bed, proclaiming a 38.
Diabetes, you like to mess with me don't ya?
So, two Juicy Juices down (that's 30g carbs total) here we go.
15 minutes later - 50
I lower her basal by -60% for one hour to help things.
30 minutes later - 65
45 minutes later - 85
1 hour later - 106
I win.

And then she wakes up and says,
"Is it OK for me to go to sleep Mom, with being low and all?"

You bet your sweet patootie it is honey, this monster went down tonight.

Monday, December 27, 2010

Drink the soda first

We went to see Tangled today at the movie theater.
On the way in, with our ticket, Grace got a coupon for a free small soda.
She got a Diet Coke. She always gets a Diet Coke when she is allowed soda.

As she sits in the theater, drinking it sip by sip, she looks at me.
"Mom, I'm pretty sure that this isn't Diet Coke."

I quickly take a sip, but now my heart is racing and I am thinking -
'Penny, the one flippin time you don't taste her soda first!!!!!'
and I cannot decide if it's real Coke or diet Coke, cause I never drink Coke and now, I cannot even taste it if it's gasoline cause my brain is trying to do the math of 5 minutes of drinking regular Coke...

I have my other daughter taste it. She doesn't think it tastes like Diet Coke.
I literally walk as fast as humanly possible with a 3/4 full cup of soda to the concession stand.

'Uh, I think you gave my daughter regular Coke when she asked for Diet Coke."
"Oh yeah, I think I did" - she actually tells me she knew she made a mistake!
I don't know whether to laugh or cry.

'Cause my daughter has Type 1 diabetes and this could have gone REALLY wrong if she drank all of this Coke."

I am met with blank stares and complete silence. 

Lesson noted - always, always, taste test the soda when it's served by someone else.

Sunday, December 26, 2010

3 at the dentist

Grace had a dental checkup the day before the day before Christmas Eve. It didn't go well.

Backstory folks:
She couldn't go to her regular dentist because the state decided about a month ago that she was 'too expensive' - (their words, not mine) for the state funded children's health insurance program (known as CHIP here is PA). They moved her to Medicaid. And her old dentist doesn't take Medicaid. So we switched to one that did accept it. Grace was fine with the move and I had accepted it.

I'm still not sure how a state goes about analyzing your child's medical records and determining that they need to be on Medicaid anyway. We didn't apply for Medicaid for her. I was fine with the PA CHIP program and the only reason she was on PA CHIP was because when she was diagnosed, my husband's company was switching insurance providers, they found out she was just diagnosed Type 1 and excluded her from coverage. It seems like a bad dream, or incredibly bad luck on our part.

This whole Medicaid thing has brought about so many changes...
--- Insulet does not ship her pods any more directly to us, but goes through a 3rd party company who provides pump supplies for Medicaid patients (at least we created a job for someone out there!)
--- I am worried that the new rules at Medicaid will limit her test strips she receives each month
--- Can you believe I needed to send the 3rd party biller for Medicaid a month's worth of blood sugar logs to PROVE she had diabetes?? You can't believe it? Neither could I until they requested it and I found myself at the copier copying 30 small little pages of logbook
--- Getting NEW referrals for her endo appts. I realized this while standing in my kitchen on a Saturday before her Monday appt two weeks ago. I damned near had a heart attack. Luckily our reg. ped is a fabulous practice and got me a Medicaid referral mere hours before our endo appt.
--- Finding a new dentist for her.

Now back to our regularly scheduled post...

The dentist appt., of course. I completed major forms on her and came prepared with a new Pod to place on her, as I expected them to take x-rays. She was due for them. Now, let me tell you, I am not a fan of x-rays, I believe in the whole 'too much radiation' thing, but she only had x-rays one other time in her dental life and she needed them. I called Insulet, who told me that it didn't matter WHERE the x-rays were taken on her, she should remove her Pod and then put on a new one after the x-ray. No biggie. It was site change day anyway, so BONUS! I told Grace all about it and she was fine with it.

I tell them straight up at the sign-in desk what's going on - she has Type 1, she wears a pump, it needs to come off, etc., I am prepared. Well, until the lady behind the desk asks me 'Well, she is well-controlled and everything, isn't she?!' I honestly wanted to take the clipboard and whack her in the head. But I suppressed those urges and said 'Well, honestly, we do the best we can, but she has Type 1.' The lady looked at me as if I had two heads. Hell with it I thought. It's the day before Christmas, honestly lady, cut me a friggin' break.

Grace goes back to the exam room and so do I. The dentist comes in and I explain it all again. She's fine with it, it's just that 'they never have had a child who had a pump before' - OK, guess we are the first then. We remove Grace's Pod, take the x-rays and go about inserting a new site and pump. Those were the least of my problems. All is well and Grace gets her dental cleaning. She is a trooper and doesn't flinch as they scrape and clean and do their thing.

The dentist comes back and it's not good news folks. Grace has 3, count 'em, 3 flippin' cavities!!!
Moment of silence.
Yes, 3!!!!!!!!!!!!
Two are in her back back teeth and one is under the one filling she does have, in a baby tooth. There is a shadow there and they suspect a cavity below the filling. My other two kiddos - ages 12 and 14 only have had ONE filling between them both in 14 years. I had a good run of 10-11 years with NO CAVITIES and now there are 3, on this child???!!! I honestly wanted to look to the sky and say 'Really??? Am I being punk'd or something?' cause this would be a grand time for good ole Ashton to appear and tell me!

But, you see, Grace is weeping in the dental chair as the dentist explains all this to me - laughing gas and filling cavities and three visits and one filling has to come out and another one go in and possibly a baby root canal - which only takes 5-8 minutes (there is a God - see!!!) and she goes on and on and Grace just keeps on weeping. And I know it has all gotten to her, cause my gal don't cry.

The dentist leans down and does the best she can.
"Why are you crying sweetie? I promise nothing will hurt you." and she means it, she does.

And I know why she is crying.
Because it is all TOO MUCH.
Because she is chronically ill and this is just ONE MORE THING on top of everything else.
Because this is our 4th doctor visit in the last 2 months and we have seen enough of doctors and dentist and chairs and sitting and waiting and being told something.
Because she knows that despite what the dentist says, it will hurt a little and she doesn't want one more thing in her life to hurt. Not one single thing.
Because she is feeling like she has done something wrong, despite what I tell her, that we will do this together, that we will find a new way to clean her teeth so there will be no more cavities, and we will be more thorough together and we will buy different toothpaste and flossers and that mommy will fix it, fix it, fix it.
And I get tears in my eyes right there in the dentist office because sometimes, it does all get to be too much.

Wednesday, December 22, 2010


Grace received this letter from a classmate yesterday. She brought it home and showed it to me.

Grace's response when I asked her what she thought about it:

"I guess HER parents give her presents. Santa comes to this house Mom."

That's my girl.

Sunday, December 19, 2010

These pants can tell the story

These pants can tell the story of Grace since her diagnosis in January 2009. As she slid them on the other night, she realized they are getting small for her. And it made both of us a wee bit sad. Because the pants do tell the story of it all and we both remember.

Grace was taken to our local hospital by me on a cold Thursday night in January, almost 2 years ago. I had called her pediatrician that night with my suspicions about her drinking tons of water, urinating almost constantly and always being hungry. I had Googled the symptoms and I knew. Well, I pushed it to the back of mind, but I knew. Her 1st grade teacher happened to call and ask me if something was wrong, Grace kept going to the bathroom in class and asking to get water. She wondered if there was something wrong. It prompted my phone call to her doctor.

But you see, Grace was already in bed for the night. She was in her jammies, sound asleep. Her pediatrician, God bless his heart to this day, told me to trust my Mommy gut and take her to the hospital to check her out. He said I probably wouldn't sleep any way, so why not wake her up and take her. So I did just that. Changed back from my own pajamas into some old clothes. Woke up my 6 year old daughter and left her in her jammies, bundled her up tight in her coat and hat and gloves, and drove to the hospital at 9:30 at night. I remember the drive.

I remember pulling into the parking lot in front of the emergency room and actually thinking the thought in my head 'It could be that nothing will ever be the same' as I locked the door and we walked in. Can you believe I actually thought it? I did, as strange as that may sound.

I told the admitting nurse my suspicions. They sent us quickly back through the ER doors and into a room. Nurses came. They checked her blood sugar via a huge meter. The lancing hurt her. And as I said my suspicions to the nurse, the meter beeped and to my dying day I will remember what she said as she laid down the meter:

"Mom, I think you may be right."

And she left the room and ran to the desk. From that moment on, it was a blur. They called two doctors to the room and four nurses. Two held her down as they inserted IV lines into each arm, placed heart monitors on her chest and did another complete blood draw.

All the while Grace is screaming 'Don't let me die! I don't wanna die!'
She screamed this because less than a year before, her beloved grandmother passed away in this hospital. This very hospital. She knows what hospitals do, in her 6 year old mind, they do not let people leave alive. The nurses are looking at me as if Grace has gonna crazy and I don't have the heart at this very moment to explain it all to them - why she is yelling this and why she thinks this. And all the while my head is spinning and my heart is breaking and I am sobbing.

"No, you are not gonna die honey. Mommy will not let you die."
And I wished it and I wished it and I wished it with my very soul.

She is so upset with all that is happening and being done to her that she wets herself. She wets through her jammies, her underwear, the bed, everything. And she is embarrassed because she knows she is a big girl and has not done this in so very long. As the lines are inserted and she begins to stop screaming, I ask if they have some underwear she could have, some pajama bottoms around that she could have. Surely they have something, they have a pediatric floor here.

And one nurse brings a red plaid pair of pajama bottoms. They are too big for Grace, for she has lost weight in the past weeks - 6 lbs. That's a lot when you only weight 50 pounds. They have a  string tie in the front and I roll up the legs, but they make her feel some semblance of order has returned. She has pajama bottoms on and she is dry.

The days proceed and we stay for 5 days. And they are filled with moments of clarity, of reality, of sadness, of guilt, of everything. They are just filled with everything that Type 1 brings.

And she wears the pants every day in that hospital. She changes her top and we bath her and we wash the pants, but she wears them. I offer her her own clothes and she declines. She prefers the plaid pajama pants to everything else.

And when we return home from the hospital and begin to carry on with our new life, they are in her pajama stash. And she wears them, a lot.  And every time she pulls them out, she starts with the same thing to me - "Mom, do you remember when I got these pants?, then the conversation takes various turns, always coming back to remembrances from the hospital :

"Yes honey, in the hospital. I remember them."
"I remember you helped take the leads off my heart monitor on my chest. Do you remember that?"
"Yes, I do sweetie."
"And do you remember when you gave me a bath in the big tub and dried me and snuggled me and pulled me back to my room in the wagon? That was fun, the wagon."
"Yep, I do remember the wagon."
"I remember the shots. And you cried Mom. And Dad came. And he cried."
"Yes, we did sweetie. We love you and didn't like that you were sick."

Soon, it's time to retire the pants. They are too small now.
I think I'll turn them into  pillow for her.
It's always good to have someone and something that remembers your story.

Thursday, December 16, 2010

The Betes Now Event!

Oh how I wish you all lived closer!!!!
Bennet of the uber-fabulous Your Diabetes May Vary and the Betes Now is putting together another Type 1 support group in January.

We will for sure be there!

The group will feature Gary Scheiner, our CDE, owner of Integrated Diabetes Services and author of Think Like A Pancreas and The Ultimate Guide to Carb Counting talking about his latest venture, Type 1 University which will bring classes about diabetes management to YOU. Check it out as Gary and others on his staff will be sharing their knowledge.

It will also feature Lee Ann Thill of the wonderful blog The Butter Compartment. She will be doing some art therapy with us all, which I am looking forward to. I think I am bringing expired pods. Let's see what people can do with them!

I'm just wondering, can you all come? Would that just be the proverbial icing on the cake?
(And no, I don't know the carb count of the proverbial icing on the cake.)

Monday, December 6, 2010


I am an avid reader and just completed Elizabeth Edward's book Resilience: Reflections on the Burdens and Gifts of Facing Life's Adversities. It is a memoir of her life as impacted by her son Wade and his death at age 16 in a tragic car accident, her diagnosis with cancer and her husband's infidelity. Regardless of one's political leanings or affiliations or what one thinks of her husband's behavior, the woman has something profound to share. 

I found so much within the book that resonated with me. The resilience to go on when tragedy strikes, though the tragedy of losing and burying a child is way beyond what I bear, it looms. It always looms as a mother of a child with a chronic illness.

'Let's start with the unavoidable fact: If I had special knowledge about how to avoid adversities, about how to spot the pitfalls of life, I would spot them. I would avoid them, and I would share how it is I have managed that. I do not. I have a lot of experience in getting up after I have been knocked down, but clearly I do not know anything at all about avoidance. We all tumble and fall. I certainly have, but in truth it is going to happen, in some degree, to all of us. Oh, maybe everyone we care about will love to attend our funerals. Maybe disease will never make you afraid of a curling iron burn. Maybe everyone whom you love and who loves you will be loyal to you in every way for every day of your life. Or maybe not.'

Elizabeth Edward's cancer has grown and she has been advised that further treatment would be unproductive. She is reportedly at home surrounded by loved ones. She released a statement tonight: 

'You all know that I have been sustained throughout my life by three saving graces -- my family, my friends, and a faith in the power of resilience and hope. These graces have carried me through difficult times and they have brought more joy to the good times than I ever could have imagined. The days of our lives, for all of us, are numbered. We know that. And yes, there are certainly times when we aren't able to muster as much strength and patience as we would like. It's called being human. But I have found that in the simple act of living with hope, and in the daily effort to have a positive impact in the world, the days I do have are made all the more meaningful and precious. And for that I am grateful. It isn't possible to put into words the love and gratitude I feel towards everyone who has and continues to support and inspire me every day. To you I simply say: you know.'

Godspeed Elizabeth.
Thank you for sharing your vision of resilience and faith and hope.
It is my grandest wish that the first to greet you in heaven is your son Wade.

Saturday, December 4, 2010

Too Scared to Bolus

Yep, you reads that right.
Too scared to bolus.
Let me explain...

Grace had 'Breakfast with Santa' at her elementary school this morning. This consists of a McDonald's pancake and sausage breakfast and orange juice. Yep, you read that right. And pancakes are her favorite, sausage is her favorite and so is the OJ. She never has eaten a McDonald's breakfast before. I searched for the carbs last night and found all my information I needed. So we calculated the carbs she was about to consume and it totaled...


Grace usually doesn't eat a meal over 45 - 50 grams of carbs, so both our eyes widened when we saw how much.

She took her blood sugar, a respectable 106.

We inputted the 96 grams of carbs into her OmniPod PDM and it spit out...

8.25 units for the bolus.

8.25 !

Grace and I looked at each other with even more widened eyes. She said 'Mom, that's A LOT of insulin!' I scrolled back to 7.0 and said, there that should be enough - what was I thinking??? and sure enough, bolused her 7.0 units and did an extend for 2/3 of it.

I must have been drinking before breakfast, cause it was pure stupidity and pure ignorance on my part.
The girl was about the drink 8 oz of OJ and eat 2 pancakes.
I knew it would rock her blood sugar.
I knew that she would eat the whole thing.
I knew I should trust the PDM.
I work hard for those basal rates, those I:C ratios, those correction factors.

I figured it out...
I was too scared too bolus.

And it resulted in a blood sugar of 328 exactly 2 hours later,
which needed how many units to bring her down?

Let me ask you again - how many units do you think it took to bring her down within range?
Well, that would be the 1.25 units I was too scared to bolus for!!!

Thursday, December 2, 2010


The meeting was full.

Of People With Diabetes who had lived
31 years
44 years
51 years
with Type 1.

And it was wonderful to sit amongst them, as a mother to a little girl who I hope, beyond all hope, lives to go to a meeting where she proudly declares that she has lived 51+ years with Type 1. It is my grandest hope for Grace. And I caught a glimpse of it last night.

Gary Scheiner runs a Diabetes Tech support groups for Type 1 folks who use the pump, and the folks that care for them, every few months, at his offices at Integrated Diabetes Services. Last night was one of those nights. He invited a local endocrinologist to come and speak about hypoglycemia - prevention, causes, etc. Gary opened the meeting by reading a children's book about having Type 1.

Gary spoke about what's forthcoming in terms of pumps and about the latest research. He also drew a great graph that correlated the amount of risk of complications from diabetes and a person's A1C. Meaning that the higher the A1C, the more a person's risk for developing complications inreases. Once an A1C of anywhere from 5-7% is achieved, the risk of complications is negliable. And when a person decreases their A1C from say a 6.5 to a 6.0, while there is gain there, the increase that a person won't develop complications is minimal. In other words, once you get to 7 and below, there isn't much 'bang for your buck' in terms of decreasing your risk of complications even more. I love that kind of knowledge. So, the tighter control is great, but too tight doesn't often get you any more than you already have.

The best part of the meeting was hearing from the older folks - ok, middle aged folks and some older folks, about their years living with diabetes. Reminiscing about the dark ages and testing their urine, giant needles, visits to the doctor, parents worrying about them, having low blood sugars and getting candy. And I think that Grace's reminiscing will be about her care, her meters and pumps, visits to the doctor, parent worrying about her and having low blood sugars and getting candy. There is a circle that completes us all in this diabetes. We are all but one pinpoint on the circle and it keeps coming round.

There were some at the meeting who were newly diagnosed, newly pumping and were aiming for tighter control because of their need for control, their need to not do what they perceive as damage to their bodies from high blood sugars, and the need to 'gain good control' by getting an obscenely low A1C. I'm talking like 5.7. Yeah. That.

I understand that, I really do. I get the need for control over this disease.
I get lost in that sometimes too.
I understand the not wanting the highs.
I know what they can do.
What I try hard to understand is the 'getting the better grade than anyone else in the class' mentality.
As if, with a low A1C, they can say they 'won.'
I'm not sure I can wrap my head around that.

Uh, I'm not sure that it works that way folks. But I kept it to myself. I was the newbie in the group.

I looked around the room. It looks like that sentiment was shared by the 20+ other Type 1 folks - the lifers - the 30+, 40+, 50+ years with this.
They smiled. They nodded.
They oohed and aahed over the 5.7 A1C.
Then they chuckled. Hard.
They gave knowing glances to one another.

They said that there is no such thing as control sometimes, diabetes does what it wants to do.
They said that they wanted to enjoy life and have the pie.
They said they wanted to live to see their grandchildren.
That they would do what they had to do, but that it wasn't a grade and it wasn't a race.
The slow and steady won, not the fastest to the finish line, in this diabetic marathon.
That they didn't think about their numbers all day, every day, and obsess about them.
They had other plans - lives to live, people to love.
That the numbers just told them what they needed to do.
They made adjustments to have that elusive 'control' but that it didn't consume them.

And I smiled.
And I knew.
I had found my bounty in all of this.