Two Tickets to Paradise

You live in Hawaii! Do you love it there?

Well…it’s complicated.

I’ve got two tickets to paradise
Won’t you pack your bags, we’ll leave tonight
—Eddie Money

It’s one of the two questions I hate the most.

You live in Hawaii! Do you love it there?

Why do I hate this question? Well…it’s complicated.

The weather is undeniably good. Averaging in the 80s Farenheit. Most days if it’s raining wait a bit and the sun will come back out and brighten things up. But it’s also one of the most expensive places to live in the country. And local folks will tell you that you can’t feed your family with a rainbow.

The beaches are inviting. But when you’re working two or three jobs to make ends meet there’s not a lot of time available to hang out at the beach. The local economy is dependent on tourism and geography means nearly everything is shipped in. This creates low-wage jobs and high prices.

I’ve met some wonderful people here who personify the Aloha Spirit. They are welcoming, generous, kind. But I have met far more people frustrated and resentful of folks from elsewhere crowding the local folks out. While I understand why some feel that way, it doesn’t make it any more comfortable to be the target of the resentment just because I didn’t grow up here.

Whenever I get asked about Hawaii there’s a split second where I have to decide. How am I going to answer? Am I going to tell the whole story, warts and all? Or am I going to mimic the tour book description? Am I completely truthful? Or do I reinforce the image they have of sunny beaches and umbrella drinks?

So it’s complicated. Hawaii is a wondrous place with amazing landscapes and kindhearted people. But it’s also a stressful place with more than its share of difficulties.

Which brings me to the other question I hate the most.

How are you doing with your diabetes?

How am I doing? It’s complicated…

 

When a Person with Diabetes Shouts in the Forest…

I spent time in the office. I played Ingress and walked 8KM in the process. My BG ran a little high and I didn’t obsess about it. I attended the DiabetesMine Innovation Summit and caused a ruckus.

…does anybody hear?

Heading home after a week in California.

I spent time in the office. I played Ingress and walked 8KM in the process. My BG ran a little high and I didn’t obsess about it. I attended the DiabetesMine Innovation Summit and caused a ruckus.

“You know what? I don’t give a s### about your balance sheet.” That’s the moment when everything changed. In the room and in my head. Whether I realized it or not my heart was already there.

It was during the payers (health insurance companies) panel. I stood up and yelled this out to the panel.

The reps, some with a medical background, were talking about how expensive chronic illness is. As if we, people living with diabetes, didn’t know this fact. The payers panel pointed out that the accelerating cost of  healthcare is unsustainable. As if we didn’t realize this every time we look at our personal bank accounts.

“I don’t see anybody up there (on the panel), except for the lady from Arkansas (Health Exchange), talking about patients.” I could feel the blood rushing to my face. I took a deep breath. I tried to calm down.

The tension in the room had been building.

Once again the patient was being scolded by the healthcare establishment. Do you take care of your diabetes? Do you know how expensive pumps are especially if you change them every couple of years? And with ACA the rules are changing and the future is even more uncertain.

The audience sat shifting around in their seats uncomfortably. The all too common questions rattling around it their heads. Aren’t these the companies who are supposed to help us get the care we need? Don’t they understand that we want the latest therapies and medical technology, not because it’s the latest and the greatest, but because it’s our only hope for a healthier life? We want to avoid those expensive complications. Without the illusive cure, access to the most current therapies is our only hope. We are putting our trust in the medical establishment and the healthcare insurance companies.

More than that. We’re putting our very lives in their hands.

I took another deep breath in an attempt to calm down. That was the point @SweetlyVoiced spoke up to tell her story. She let the panel know that even though they say their companies want to “get patients the care they need” that’s not what we patients are experiencing.

It was called the “Patients’ Voice Summit.” Sometimes, to be heard you got to raise your voice — even if it feels uncomfortable for everybody in the room.


DISCLOSURE: The folks at the DiabetesMine invited me to attend the 2013 DiabetesMine Innovation Summit as a winner of the Patient Voices Contest. They paid for my airfare, hotel, and meals while at the summit.

A Hopeful Type 1 Tale

I just finished reading Supreme Court Justice Sonia Sotomayor’s memoir, My Beloved World.

She starts her story shortly after being diagnosed with Type 1 diabetes as a child. Her parents are arguing over which one of them is going to give her the shots of insulin she needs to survive. As the argument goes on Sonia decides then and there that she is the one who has to give herself the shots.

My Beloved World by Sonia SotomayorI just finished reading Supreme Court Justice Sonia Sotomayor’s memoir, My Beloved World.

She starts her story  shortly after being diagnosed with Type 1 diabetes as a child. Her parents are arguing over which one of them is going to give her the shots of insulin she needs to survive. As the argument goes on Sonia decides then and there that she is the one who has to give herself the shots.

It’s exactly this determination that gets this working class Puerto Rican girl from the Bronx to the Ivy League, followed by a distinguished legal career with the NY District Attorney, on the federal bench and finally on to the Supreme Court.

Justice Sotomayor easily acknowledges help she received along the way: a family doctor who referred her to a juvenile diabetes research program at the Albert Einstein School of medicine; a school chum who pointed her toward the Ivy League; and various professional mentors along the way.

But if others helped open the door, Sotomayor made sure she did the work and proved herself able after walking through it. She graduated Princeton summa cum laude. Made the Harvard Law Review. And was one of the youngest lawyers to be appointed to the federal bench.

Along the way Type 1 diabetes is her constant companion. She talks about how when she was diagnosed the assumption was that people with diabetes inevitably develop complications and die young. She mentions several hypoglycemic episodes and realizing that if she doesn’t let the people around her know she has diabetes she is risking her very life. She mentions having to count calories and grams of carbohydrates and protein, and then calculate her insulin dose. She mentions all this in passing.

While Type 1 diabetes is always there, it’s in the background. While it shapes her and her life, it does not define her. She experiences the love of family and friends. She pursues and achieves her dream to be a judge. She enjoys good meals and travels. On the balance I think Sonia Sotomayor would say that she is living well with diabetes.


Video Source: Knopf Publishers

 

More than a Century of Inspiration

With over a century of diabetes experience between them Joslin Medalists Tom and Richard share their experiences in a gentle, inspirational video chat.

TuDiabetes hosted a video chat with Joslin Medalists Tom and Richard last week.

For me the best moment was when Tom shared a story about experiencing a hypo while on the golf course. He had forgotten to put some sugar candy in with his clubs and had to ask his friends to go get him some candy from the clubhouse so he could bring his blood sugar back up.

“That was careless,” he said.

“That was careless.” It struck me how gentle he was with himself. He didn’t say he say he was stupid or made a mistake. He didn’t make a big deal out of it. It was only a moment of carelessness. He understood what he needed to do differently next time. That is all.

Dear Rep. Giffords, Thank you for being an inspiration

Source: Flickr CC aemerybrown-SA 2.0

Rep. Gabby Giffords announced Sunday that she is resigning her seat in Congress to focus on her recovery from last year’s attempt on her life. Watching the video of her limping down the sidewalk with her husband at her side and then telling the world she’s resigning was heart wrenching.

Here is a young, vital woman speaking slowly, clearly and deliberately to get her message across. The damaging effects of the bullet she took are readily apparent.

Yet her words are full of hope. She is focusing on her therapy/recovery. She looks to the future. While she’s already beat the odds on even surviving, she is clearly not settling for what she’s achieved so far.

  • Rep. Gifford’s recovery is a 24/7 thing — just like living with diabetes.
  • Her future and her future state of health are uncertain — just like living with diabetes.
  • Each day requires focus and effort and dedication — just like living with diabetes.

Yes, yes, there is no “full recovery” from diabetes. The reality is for Rep. Giffords there is no “full recovery” from her injuries — her life and health won’t ever go back to what they were before being shot.

She chooses to move ahead.

And I choose to be inspired by that.