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.









Tuesday, May 16, 2017

Dblog Week: The Cost of Insulin - I'm looking at YOU, Eli Lilly & Novo Nordisk


What's your life worth? No, really, what's it worth to you? Are you non-diabetic? Give me a figure. OK, now in a second, I changed your life. You're diabetic. Still worth as much? 

What's a vial of insulin worth? Eli Lilly and Novo Nordisk say it's worth a lot of money. More money than ever before. TONS more.  Feel better now? Eli Lilly and Novo Nordisk both increased their insulin price by 7.9% recently. Why, you ask? This is the standard mantra I hear repeated at us in the DOC when we ask: 'It's complicated.'

You know what's complicated? Brain surgery. Heart valve replacement. Advanced Calculus. Getting a 3 year old to stay in their own bed at night. Those things are hard. Providing and making insulin as a company, don't even talk to me about complicated. It's only complicated because they do not want to admit that they want more profit. Hands down profit, on the backs of people with diabetes. Diabetes is the new black.



Dear Jesus on a bike. What the actual hell? 
I mean, come on folks, more competition in the marketplace, the price goes down, right? 
Oh, you're diabetic. I forgot. For you, the price goes up. They know we need insulin to live.

We are 75 years after the patent for insulin expired. Prices should drop, right?
Oh, ok, they've made improvements to insulin since then. Ok, I will give them that. Faster, longer acting, more stable. But, 75 years???

Then we have the middleman who needs to get paid, the pharmacy benefits manager. The PBM (which I desperately want to call the PBJ in honor of a peanut butter and jelly sandwich) gets rebates to keep our favorite insulins, or our not-so-favorite insulins, on their preferred formulary list. Yeah, we need more transparency here, insurance companies and PBMs. 

There is so much more. I have read it all. Ad nauseum. Over and over and over. And I am done. I have so many articles and websites and hashtags and blogs in front of me, and they are all angry. People cannot afford insulin. We have people in the DOC rationing insulin. We have calls to alarm for those who need it right now and are you in Philly? Cause I can get it to Philly. Oh no, Iowa, crap, we need some DOC members in Iowa. Since when did the DOC become the black market for insulin? Well, since greed took center stage, Eli Lilly and Novo Nordisk. 

There's a time for playing nice and there's a time for harnessing our power, collectively. We, the people with diabetes, and the caregivers of young folk with diabetes, we hold the purse strings. We cannot live without insulin, but we have power, more than we realize.

First things first, DOC, - GET OUT OF BED WITH PHARMA.

I mean it. Right now. Get out of the damn bed. I'll wait. Don't accept gifts and flights and hotel rooms and food and parties and invites and groups and meetings and speaking fees and cocktail parties and little events from them. And while you are at it, some members of the DOC, stop telling me I'm 'jealous because I didn't get invited to an event.' Enough with that truckload of crap. What a reducing of a monumental issue because you think I'm offended. You know what offends me? World hunger, injustice, bigotry and unaffordable insulin. I refuse to take it, the crap and the money. 

And if they support your app, give the money back. Crowdsource the app from the DOC. I'll start with $25.00. Be beholden to no one. If we really want it to change, they'll listen when they don't have money in our pockets.

Write your Congressmen and women. Get the forces that be in our government to investigate price gouging. There are already alerts in the Congressmen and women's ears about this. It's all over the news. Capture it now. Speak to your local reps. Go to your capital. I'm asking for meetings with my two Congressmen and I'm bringing a little pre-teen diabetic with me. Heaven help them.

Hell, let's have a Diabetic March on Washington. Name the time and place, I'm there.

Haven't we had enough, folks? Isn't it about time we demand #Insulin4all - affordable and accessible. Then, let's rise.






Monday, May 15, 2017

DBlog Week: Unexpected Normal


I never expected that this would be normal. I didn't think that one day we would just roll with a 317 BG, like it's no big deal. I didn't think that one day I would not talk about the 39 BG that hit at 3 AM. I thought all of it was everything, all the time. And it was, but now it's not.

Maybe that makes me a shitty D parent. Maybe it makes me a 'normal' one, I don't know. Maybe it just is what it is. After 8 years of the D, and raising a young girl to a teen, I cannot ride the rollercoaster any more. It takes too much of my soul and my energy. 

I used to stay awake all night, watching the 317 lower, or in some cases, get higher. And I wouldn't go to bed until it was 'within range.' It might take 30 minutes, or it might be hours. It was anyone's call how it would turn out. How it usually turned out was I was exhausted and no good to anyone the next day. Same with a very low BG. I used to stay awake for hours waiting for it to rise, rise rise. I still DO stay awake to see the lows come up, but our lows have adjusted. For Grace, a 40-ish BG warrants me staying up, a 50-ish does not.

Instead, I know a strong temp basal increase along with a great big truckload of insulin will get my Grace down from the high. And it will happen within 2-3 hours. And I know that a Juicy Juice and a granola bar will raise her BG about 50 in about 30 minutes. And I give her them and I come back in about 2 hours to make sure they worked. I don't sit and wait anymore. 

The 'new normal' is what is unexpected. It crept up on me. There was no big light switch that turned on, or off, for that matter. It was a slow turning to a manageable life with an unmanageable illness.




Wednesday, May 10, 2017

Diabetes Blog Week Is Coming!



Thanks to Karen over at Bitter-Sweet Diabetes for the wonderful 8th Annual Diabetes Blog Week each year. This year I'll be writing every day for a week from May 15th - 19th.

The topics are:

Monday - Diabetes and the Unexpected
Tuesday - The Cost of a Chronic Illness
Wednesday - The Blame Game
Thursday - Throwback Thursday: What Brings Me Down
Friday - More Than Diabetes
Wildcard - Diabetes Bloopers

I'm ready to go! See you on Monday!