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.

Wednesday, May 17, 2017

DBlog Week: The Empowerment Game


Let’s not play the Blame Game. That game stinks.
Let’s play the Empowerment Game. Much better.


It’s 2009. Your six year old daughter has just been diagnosed with Type 1 diabetes and you are in the ER at a local hospital. It’s almost midnight. You are alone with her and you finally get to the hospital room after a long night in the ER. Your head is swimming with data and doctors and nurses and IVs and OMGs. You finally have a moment to think about it all.


And in walks a nurse and and a D parent.


‘We have some things for you. Can you talk for a minute?’

‘Yeah, I mean sure. We’re here aren’t we?’

‘I want you to meet Jane, she’s a parent of a child with diabetes just like your daughter. In fact, her daughter is 9 now and was diagnosed at age 5. She wanted to come say hello.’
‘Hi. I know it’s really really hard right now. Someone said this to me, and now I am saying it to you. You can do this. And I’ll be here to help, as part of your support team. If you want to talk, great, and if it takes you some time to talk, that’s fine too. Here’s my name, my cell phone number and my email. If you haven’t reached out to me in a few weeks, I’ll reach out to you, ok?’

‘Um, well, sure. You know, this is so overwhelming right now. I don’t even know what to ask. Thanks though.’

‘No problem. I’m just a phone call away. And I’ve been in your shoes. You are not alone.’

Rule #1 of the Empowerment Game: No one is in this alone.


D parent leaves.

In comes a box.


In the box is:



Rule #2 of the Empowerment Game: No need to reinvent the wheel, others have tried them and they work, now you.


And what else is in the box?


A computer. Just for you. And it’s bookmarked to favorite blogs in the DOC. It’s bookmarked with informational websites about diabetes. It’s bookmarked to great DOC community sites.

Rule #3 of the Empowerment Game: No one is in this alone (see Rule #1) and there is a huge community of people who get it, who are willing to help.


There's one more thing that awaits you in this game. And it's the best one yet.

Oh look, here they come into your hospital room!

It's a representative from your insurance company.

'I am here to help you make this disease more manageable. I understand this is hard work, for everyone. The last thing you need is to fight insurance companies. I'll be your connection to an efficient, responsible and proactive system of care for your child. I will help you get what you need to keep her healthy and happy. Here's my direct phone number.'


Wouldn't this all be fantastic? To leave a place where your child was just diagnosed, with a full set of resources, connection, people who get it, and information to help you get on with caring for your child.