Friday, May 27, 2011

Parental Stress Survey

Dr. William H. Polonsky, (Behavioral Diabetes Institute) and Nicole Johnson (PWD, former Miss America and dLife anchor) have teamed up to develop an online support tool for parents of teens with type 1 diabetes. To help them craft this program, they are reaching out to parents to learn what it's like to help manage this disease. You can take part in this Just for Parents Survey by completing a couple web questionnaires. They need our input by July, 1 so act fast!

Wednesday, May 25, 2011

Not our fault

For the past couple weeks we've been battling high blood sugars at the Maxwell house. We've rejiggered the basal insulin amounts (Lantus), adjusted insulin to carb ratios, changed the time of injection for boluses. Nothing seemed to make a dent, and much self-blame was heaped on ourselves.

Then Marinda had a light bulb moment this morning.

Maybe, just maybe, the problem was the insulin we were using - not HOW we were using it. After all, we had switched suppliers to a new mail order prescription company.

Sometimes it's important to remember that the insulin is bad - not the decisions you make.

Tuesday, May 24, 2011

Embracing the Burden

Last week I attended the JDRF Annual Conference and was elected to the 2012 International Board of Directors. It's a tremendous honor, and I see it as a chance to keep doing good for the Type-1 Diabetes community.

So what does being on the "big board" mean?

You may think we sit around dressed in tuxedos, smoking cigars in oak-paneled conference rooms. You may think that we get our kids and loved ones at the top of the list for any promising cures before anyone else does. You may think that we get to tell everyone what to do without lifting a finger. If so, you think wrong.

My outlook of being part of this august board means signing up for even more work, sacrificing time away from my family and taking on accountability for everyone who has donated as much as a single dime to the charity. Pat, who is a current board member, joked that one of the "perks" is that instead of walking the full course during one of our walk-a-thons is that we get to hoof an extra mile more.

Until now, my family and I have focused on raising money to support research and advocacy of this very personal cause. Now that I'm on the board, I get to spend that money - over $100 million of it every year. All my life, spending has been the easy part of the financial equation. In this case, it's not.

I know that I'll be spending nickels and quarters that little kids (like my daughters) have raised in lemonade stands. Every JDRF check stroked will draw on money that was raised through personal, humble pleas from desperate parents. Knowing this, I am burdened with the responsibility to ensure that the money goes to absolutely the best scientists and that not one cent is wasted.

It's a heavy burden indeed, but one that I gladly embrace on behalf of Cassie and Marinda. In fact, I'm incredibly grateful for it.

Wednesday, May 11, 2011

D'oh! Diabetes Bloopers

This post is also part of D-Blog Week: Day Three's topic- Diabetes Bloopers

Grogginess and diabetes don't mix. Late one evening I hobbled upstairs to check Cassie's 2 a.m blood sugar like I usually do. I had forgotten that she was having a sleepover and the playroom was crowded with softly snoring girls. Luckily I tripped over Cassie who was wrapped up in a sleeping bag on the floor before I took the lancet to a non-diabetic finger!

Tuesday, May 10, 2011

Letter Writing Day: Dear Josh

This post is also part of D-Blog Week: Day Two's topic- Letter Writing Day

Last night I got a very nice note from a rare individual. His name is Josh.
Josh is an adult with Type-1 diabetes. Diagnosed at the age of 9 he has lived with it for 20 years. But that's not what makes him rare.

Like many of us, he wants a cure for diabetes.
Like many of us, he wants a cure for cancer.
What makes him rare is this: he wants to actually DO something about it.

In his message he asked my advice about building something online so he could "step up and get a really big effort behind a cure." So here's an open letter back to him:

Dear Josh,

I'm excited to hear that you realize that just "wanting" is not enough, and that ACTION is needed to get us to a cure. Setting up websites to raise money for research is a great way to do it, but you should be sure to be creative about how you do it as Monica did.

You'll have to try lots of different stuff. Just go ahead and do it.

Also, don't be afraid to fail a lot. I've experienced a lot of unsuccessful online efforts for JDRF, but I tried lots of things so we could eventually come up with a few winners like juvenation.org.

I guarantee that you'll get disappointing results or get tripped up. Just keep getting up to do more - no matter how many times you stumble. You should be properly equipped for this, because that's the kind of perseverance you've needed to simply manage your daily blood sugars.

And I'll be here to help.

Good luck!

- Red


P.S. I hope anyone else who reads this letter gets off their keister to joins us in actually DOING something... Because the world needs more Joshes.

Monday, May 09, 2011

Admiring Our Differences

This post is part of the Second Annual D-Blog Week led by the ever-inspiring Karen Graffeo.

I don't have diabetes.
My daughter does.

I don't know what it feels to be in the throes of an insulin reaction, groggy from high blood sugars or depressed from feeling like my disease will never be cured.

Frustrated on a night of high blood sugars, Cassie can get sharp and curt with her mother and me. It's easy to feel the barbs from my daughter's words when she cries out that I can't possibly know how she feels.

But I know how she SHOULD feel. Healthy. Unfettered. Unworried.

This drives me to be at her side when she needs me. It compels me to fight for government support for research. It strengthens me to put aside personal pride and ask family and friends for donations for research.

The gap between what is and what can be seems, somedays, like an insurmountable difference. But we both agree it's a gap worth closing.