Monday, January 29, 2018

Grape Glucose Tabs: A Love Story

This is a love story, I guarantee you. There are some things that you should know first.

Grace only uses CVS Grape Glucose Tabs when she has a low blood sugar. It's the only flavor she likes and they are not chalky (yeah CVS!). If you are new to the Type 1 diabetes game, glucose tabs are like quick shots of pure sugar. They raise a person's blood glucose levels quite quickly. Along with Juicy Juice and granola bars, they are Grace's 'go to' when she finds herself having a low blood sugar. Low blood sugars are dangerous. Your body and mine all depend on glucose to run all the cells in our body. Low blood sugars are your cells slowing down, trying to conserve glucose to keep you going. Lows are more dangerous than highs, in my opinion. Lows lead to passing out if you don't give your body some glucose in order to run.

Grace uses about a bottle and a half a month. Wow, that's a lot you might say. I don't compare her to anyone else, so I wouldn't really know. Is it? Who the hell cares anyway, she uses what she uses. And no, she doesn't experience 'a lot' of lows. Thank you for your advice you are about to give, but no thanks. She's got this.

This is why she uses a lot of them. She stores them various places in little easy-to-carry tubes.
She has glucose tab tubes:

  • in her diabetes kit that goes wherever she goes
  • in her school backpack
  • in her purse
  • in her dance bag for dance class
  • in her dance backpack that she takes to dance class
  • in the glove compartment of each car
  • at the nurse's office at school, in her care kit for emergencies
  • in my purse
  • two spare tubes on the diabetes shelf in the kitchen, for 'grab and go' needs
  • in her bedroom next to her bed
  • there are other hidden places she probably doesn't even tell me
  • she might have some at a friend's house, I don't even know
  • there may be some in her coat pocket
And we reload them from the large tab containers.

I went to CVS to buy them as she was out. Hmmm I thought, none at our local CVS, that's odd. I'll hit the next CVS down the road. Hmmm, empty shelf there too. Checked yet another CVS. Empty shelf. Little bit of panic set in. No problem, the wonders of the internet, right? CVS.com will have them. Nope, they don't. The tabs don't even appear on their website.

Noooooooooooooo.

So I did what any mom would do, I posted on Facebook with a picture of the tabs.
All hands on deck in a time of crisis.


And my friends responded, from far and wide. They encountered empty shelves, and texted me pictures of empty shelves, and said they were going to the next CVS to try and find them. They named the stores they had been to, so others would know they didn't have them there. They sent me texts of 'Score!' and 'I got 'em!' Bottles were handed to me as I entered work today, and more were promised tomorrow, bottle are coming in the mail, and bottles are being dropped off at my door.



I have bottles of CVS Grape Glucose Tabs from Minnesota, Seattle, Northern NJ, Pennsauken, New York, Collegeville, Lansdale, Center City, Pittsburgh and beyond.

To my friends who responded to my call to action so splendidly, thank you. You came through in spades. Grace and I are indeed very lucky to call all of you friends. There is a saying that it's the friends you can call up at 3 AM that matter. You are my 3 AM friends.

Thank you, my village, for making something that at times is so awful, so very wonderful.






Tuesday, January 9, 2018

Year 9

Grace was diagnosed with Type 1 diabetes on January 9, 2009. This year, 2018, makes NINE years of living with Type 1. Nine years is so very close to the big TEN. That reminds me, I have to apply for Grace's 10 year medal from Joslin. Imagine that, ten years. At times, it seems like ten minutes, then there are times that it feels like every minute of those ten years.

Here are the past years if you care to take a look.

Year 8
Year 7
Year 6
Year 5
Year 4
Year 3
Year 2
Year 1

Grace is pretty much on her own. I am still involved with changing basal rates but everything else is all hers. Carb ratios are hers. There are days, sometimes multiple days, that go by and I don't know a BG. I take a look in her OmniPod PDM and sure enough, all the testing is there. Every single day. She remembers to test before lunch at school. She remembers to test when she walks somewhere after school with a friend to get Starbucks. She remembers when she is at her friend's house at a late night party. She stays up later at night if she is high, checking herself. She writes down on our shopping list to please grab some more juice boxes for her and some granola bars, please.

I always tell Grace as she leaves for whatever event she is going to - 'Text me if you need help on any foods' - but frankly, she never does. She may relate later that she had a couple slices of pizza and some chips and dosed 50, and sure enough, there she stands later at a prime 106 BG.

This is a sample text from her about our life right now:







I try not to judge others and their management of their kids and teens, I really do. All I know is that I have learned that this is not MY diabetes. As much as I want to take it from her, I can't. All I can do is promote independence while teaching her what I know. I am not in this to get the perfect A1C. I am not in this to win at who can stay in range the longest and the tightest. I am not in this to prove I can rock a pancake breakfast and see no spike at all. I am not in this to watch her BG 24/7/365.

I am in this to create a young woman who manages her diabetes and is emotionally healthy and owns it. If I died tomorrow, she would be good to go on her diabetes. She knows what to do and is allowed to do it. It took years to get here. She's going to be 16. Soon she will be done High School and off to college. I'm just backup right now, then soon I will fade away. And this kid's gonna be alright.

Happy 9th Diaversary, sweet Grace, you are awesome.

I asked Grace to send me a picture that she would like on this blog post. True to form, she sent me these two.







Sunday, November 19, 2017

World Diabetes Day 2017

World Diabetes Day. Around here, we live that every day. For example, in Kohls dressing room trying on bras on Saturday. Grace bumped her Pod (her insulin pump) and a minute later, it started screeching. It's a high pitch death wail that goes to your brain with the thought of 'CHANGE ME NOW!'
Grace just looked at me and then covered her Pod with her hand, hoping to quiet it. She said 'They are going to think we are ripping off sensor tags in here!' which I then found funny as hell cause they probably are! Then we set about changing her whole pump site. At least it was a semi-clean place, we have changed pumps in way dirtier environments.
To get the alarming pump to stop squealing, I had to jam a paperclip into a tiny hole in the back of the pump. I managed to kill it, shutting it up. By the time we got done we both were laughing. And that's how we celebrated World Diabetes Day.


Tuesday, August 15, 2017

MacGyvering the Diabetes Bag

First of all, let's start off with 'MacGyvering,' a term I love. I MacGyver a lot of things in life, but I really love to MacGuver make-up bags into diabetes supply bags.




I look for make-up bags that have zippered compartments. They are a rectangular shape, zip all the way around, and have inserted compartments that often snap in place. I have found them at Sephora, Ulta and most often, Target. I wrote about one on this blog way back in 2011. I titled it 'Bag of My Dreams' because up until then, Grace was relegated to drab, boring, always always always black diabetes bags. Who wants any of that? Not an 8 year old girl back then and certainly not a 15 year old young woman onow.

Grace has stylish ways of carrying her supplies when she goes places too. She has the perfectly named Cherise bag from Myabetic. It's wonderful. It looks great and the inside holds all that she needs.

Back to the make-up bag. Here is what I do to convert it to a diabetes bag for Grace.


I found this Sophia Joy make-up bag at Target, in the make-up section. In fact, they have it online too for $24.99!


See the two zippered compartments? You will love them for supplies. They hold everything perfectly. They snap in place, so they can easily be taken out too. Grace sometimes put her BG tester and her test strips into the colored zippered compartment and unsnaps it and throws it into her purse, if she is short on time or space for the entire kit. In the colored compartment is where Grace stores her extra Pods, Unisolve, SkinTac and Flexifix.


Here is the back section with the small spaces for make-up brushes. This is what I need to MacGyver in order for Grace's PDM to fit into this space. The space on the far left perfectly fits a vial of Novolog and the space next to it perfectly fits her BG tester and a vial of test strips. It's the two compartments on the right that I need to make into one larger compartment.


Get a seam ripper tool and start. Take out the stitches that separate the last two sections. Just be careful and don't rip the actual fabric of the kit. It takes a few minutes but pretty soon you'll have one large compartment.



Voila! One large compartment for a PDM.


Here it is, full, as she carries it each day. She can survive anything, for days, with this complete kit. In her clear pouch she has needles (in case of pump failure or high BG), Neosporin for cuts, scrapes and sometimes her insertion site which can become irritated, glucose tabs, another BG tester (clicker), and some meds.

MacGyvered.

Sunday, July 23, 2017

Diabetes Camp - Year 7

We're here!

The beautiful road that leads to camp.


It's July and that only means one thing, well actually two things, in Grace's world. One, her birthday and two, diabetes camp. She just returned from a week away at Camp Setebaid. Of course Lily was there with her, what would camp be without her DBFF (Diabetes BFF)!

The annual 'exchanging of the gifts.'

In front of their cabin, Sproul.

The annual goofy shot.

The recreation of their first picture together, 7 years ago.



We did the usual drop off. She handed over all her supplies. I told them she is independent in her care. If they want to know what to do about a high or a low, just ask her. Her doctor was very nice, dutifully wrote down what I told her about carb ratios, temp basals, correction factors and the like. I wished them luck as I always do.

Darn right they lug their own stuff to their cabin!


In her cabin, I helped to make her bed, which of course was right across from Lily's bed, so they could look at each other and chat all night long. No top bunk for Grace this year. I think how wonderful it is to have someone you love so much as a friend that you want to stay awake all night talking to them.

Fast track to six days later. Pick up day. Grace spots me getting out of the car in the parking lot and runs to me and hugs me. That never changes. I am warmed in my heart that she loves to see me. I've missed this sweet goof. Soon we group hug - Grace, Lily, me and Lily's mom. The gang's all here.
The 'after' camp pick up photo.

The response to 'Where's your sites?'



She is sweaty and dirty and smells a bit. And it's all good.

'Did you have a good time?'
'Yes, a good week. It was HOT.'

The end of camp brings a circle of campers and counselors. They make announcements, and they sing their songs. Some are half hearted attempts, but they all sit together in a circle. Pumps everywhere. They all look tired and done with it, but it occurs to no one to not try and sing the songs, even if you mouth the words. They sing one that involves a dance challenge to cabin after cabin, and they stand and dance when their cabin is called. Dutifully, as if it's a Godgiven automatic that one stands when one's cabin is called. This is camp.

Everyone sign along!


We collect her medical supplies and check out. Grace tells me her doctor in her cabin changed her insulin to carb ratio during the week. It has made Grace upset, as she ran pretty high at times because of the I:C change. Grace tells me she should have spoken up about it. I reassure her they were just doing their best to keep her from going low. She was 1:8 for her carb ratio when I dropped her off and it's been changed to 1:20. I ask her doctor about it when we check out, and she explains why. It's not what I would have done, but they are in charge for the week. I explain another way of dealing with exercise and it's impact on BG, including temp basals. But part of camp is letting them be in charge, correct? Camp is a learning experience for me too.

Grace's spreadsheet of her BGs at camp.

Her pod is falling off and I suggest we do a quick pod change before we hit the road. A clear table and three minutes, and we are on our way.

Three minutes, tops.

Grace and Lily hug goodbye, for now. Grace hugs friends and counselors and says 'thank you' again and again. Soon, we are pulling out of the lot and picking up our goodbye backpack.

On the ride home, Grace tells me she already misses camp. Like 'I want to go back to camp right now, Mom' missing. I laugh and she does too. She tells me it's the tired talking.

I ask what she learned this year at camp.
'I learned I should speak up when someone tries to change my insulin to carb ratio.'

Diabetes camp, good for learning self-advocacy skills too.

What a great group of gals!

Community


Sunday, May 21, 2017

DBlog Week: More Than Diabetes


Yes, I know DBlog Week is over. I'm late to the party with this post. Reason? Life.

We were asked to write about our lives outside of diabetes. Here goes, folks.

I hate to cook
Like really, really hate it. And surprise, surprise, I stink at it too. I cannot cook anything. Oh I can do the basics - make some chicken, spaghetti, boil things. That's where my talent ends. And I am totally fine with it. If I never spent one more minute in a kitchen for the rest of my life, it would be alright with me. I really don't even care how pot roast is made, or how to cook fish. Nothing interests me less than cooking or talking about cooking. Don't get me wrong, I love to eat. It's the cooking I despise. But a WIN for me is that I raised three kids who eat very well, thank you. 

I coupon the hell out of everything.
I have a coupon for everything. I love to save money. I have always thought of coupons as free money and who doesn't love that?! I am not one of those crazy coupon ladies who buy 250 jars of mustard because they have coupons. If I do not need it, I do not buy it. But if I have free coupons for things, I get as many as I can and I drive to our local food bank and give them a donation. There's nothing that makes me happy like a good coupon.

I collect snowglobes.
I have about 300 of them. And I should probably post a picture of them here, right? Alas, as I type this, no photo. I promise to add one at some point. I have collected them since I was a little girl. I have them from all over the world, in all shapes and sizes. And yes, I shake them and watch the snow and glitter fall. I use my snowglobes folks, and people over the house are welcome to shake and touch and admire them all they want. Nothing brings me joy like a snowglobe.

I run a support group for parents of children and adults with autism in the Philly area.
When my oldest child was diagnosed with autism at age 2 1/2, she was the only child I knew with autism. She is 20 now. I thought there should be support for others on this journey, so I joined with other moms to create a support group, online and in person. We have over 250+ members, have meetings, and talk via a listserv. It's one of my proudest accomplishments. Parents don't feel so alone now.

There ya go, peeps. Something other than diabetes.
Now back to our regularly scheduled program.






Thursday, May 18, 2017

DBlog Week: Chronic


Grace has grown up with diabetes since age 6, 
and is now 14, almost 15. 
There is a sense that this is the way it will be. 
And at times, 
that brings me a feeling of sadness 
that washes over it all. 

There is a hurry to the early days, 
months and years. 
I've felt days of sadness throughout them,
 but the teen years
 bring a different shadow.

Grace is on her own,
 dealing with her diabetes all day, every day. 
She's independent. 
I am the 'checking in' mom.
But it's all hers.

As a mom 
you don't think about how 
the chronic component will affect you. 
The chronic wears on me. 
The wearing 
creates the sadness
 that this will not change, 
no matter what I do.

So now we just wait it out. 
We just check
 and bolus
 and basal
 and carb count
 for the rest of her days.

 Yes, bionic pancreas,
 I hear you knocking.
 Still a device.
 Still something to tend.
 Still something to worry about 
as a mom. 

We do not talk enough
 about the monotony of it all. 
And the impact of the endless. 
We should. 
We should peek under the cover
 and bring it to the light.