In Her Eyes…

1285440_18514244It has been a constant for her, like the stars that glow brightly from her ceiling when we turn the lights off at night. Always there, unseen, until you look up. Shining.

My diabetes. I know she understands that I am different. The noises from my insulin pump and my Dexcom have been lullabies (not harmonious and soothing) since her birth. As she grew, tiny fingers would fiddle against the tubing. For a time, she would not sleep until she pushed the button to light up the Dexcom display and had me read the number to her. It became a bedtime ritual.

Glucose tabs are used for counting lessons now, but the tubes I carried were once rattles. Juice is shared, but she no longer cries when I suck the box dry. We take our vitamins together, but she will only eat the red gummies, so I get stuck with the orange.

I think that she understands how hard I try to not let diabetes be in control of me.

And then I overhear her playing in the other room by herself. The stuffed animals are being told that they are sick. They must go to the doctor. They must feel better. They must not lie down on the couch.

The couch.

That is where I go when I’m low and need a minute to recoup when we are home. I think back to passing comments she makes as I wait the 15 minutes between checks: “Mommy, are you OK?” “Do you need medicine?” “Rest is best.” “It will be O.K., Mommy.”

She thinks I am sick.

I want her to see that my diabetes, while constant like the stars, is only a small part of who I am.

But this morning, in her beautiful blue eyes, it is all she sees.

 

Two Minute Diabetes Advocacy

708615_95129272If you have two minutes, you can advocate for diabetes.

I know what you’re thinking.

What can I do in two minutes?

More than you probably think possible.

There are those who make it their life’s mission to advocate for diabetes. I am so very grateful that they speak in front of the FDA panels and talk with decision makers in D.C., because I can’t right now.

You may not be able to devote a lot of time, but you still want to make a difference. Me, too.

With that in mind, I am dedicating a portion of The Perfect D blog to “Two Minute Diabetes Advocacy”. This is the first portion – an amuse-bouche (a little taste) to whet your appetite.

A stumbling block I see in advocating for diabetes is the amount of reading that needs to be done to understand the issue, whether it be a docket or a brief or a bill being introduced. There can be a lot of gobbledygook and if you’re like me, you want to cut to the chase, get to the point quickly, and then act on it.

Two Minute Diabetes Advocacy

 

Here’s the deal I present to you…

  • I’ll read the gooblyedygook,
  • summarize the key points for you (and yes, I’ll add my own comments. It’s my blog.),
  • and then give you the steps you can take in just two minutes to advocate for diabetes.

I’m association agnostic when it comes to diabetes advocacy. If more than one organization offers an easy way to express your opinion on a topic, then I’ll give it for you to decide. You just won’t have to go hunting for a way to advocate. I’ll bring the options for you.

Some may take just a little longer than two minutes, but you can skip an extra visit to Facebook occasionally, can’t you? Perhaps one less Buzzfeed quiz?

I’ve seen what the power of our community can do with just a little time from each of us. There are so many opportunities to advocate for ourselves, our loved ones, and for the future of the United States.

1 in 3 American adults will be diagnosed with diabetes by 2050 if we don’t do something.

Your end of the deal is to take those two minutes and do just one of the options I give you. Of course, it’s on the honor system, but I’m hoping that we will make a difference. So little time can do so much good. Let’s start with this…

National Diabetes Clinical Care Commission Act

The Highlights from the Bill (House 1074/Senate 539)

“To amend the Public Health Service Act to foster more effective implementation and coordination of clinical care for people with pre-diabetes and diabetes.”

“There are 35 Federal department, agencies , and offices involved in the implementation of Federal diabetes activities.”

What The Bill Will Do

What the bill will do: Create a National Diabetes Clinical Care Commission to make recommendations regarding better coordinations and leveraging of programs that will support clinical care (between health providers and people with diabetes and pre-diabetes).

This Commission will include voting members from heads of Federal agencies/departments that impact clinical care AND a select few outside of the government: clinical endocrinologists, physicians who impact diabetes care, primary care physicians, Certified Diabetes Educators, patient advocates, national experts.

The Commission will meet up to four times per year to:

  • evaluate the existing utilization of diabetes screening benefits,
  • address issues with data collection or the benefits,
  • identify current activities and gaps to help clinicians provide integrative care for people with diabetes and pre-diabetes,
  • make recommendations about coordination, tools, and programs needed,
  • recommend how an outcomes-based registry can be created and used,
  • evaluate and expand education and awareness to physicians and other health professionals regarding clinical practices for the prevention of diabetes and the precursor conditions of diabetes,
  • review and recommend outreach and dissemination of educational resources for health professionals and the public.

After meeting for the first time, the Commission will have 90 days to come up with a plan for carrying out the activities of the commission, including a budget, resources needed, and who needs to be involved to make it happen. In three years, if not sooner, the Commission will submit a report to Congress and the Secretary of HHS of the findings and recommendations.

Why You Should Care

1) We do not have a Commission for diabetes. One in three Medicare dollars goes to treating diabetes and its complications. Duh. We need one.

2) 35 Federal agencies. Have you tried to get 35 people to communicate on something, never mind 35 agencies? This Commission will ensure that no one is reinventing the wheel or wasting tax dollars duplicating work.

3) Educational materials. How many times do you cringe when a clinical medical professional makes a comment about diabetes that is just not correct. The Commission will help heighten diabetes awareness on a grand scale.

4) Patient advocate on the Commission. A voting advocate. I’ve met some existing FDA advocates and they are super intelligent. We need a patient at every table. This Commission will have one.

 How You Can Advocate for Diabetes In Two Minutes Or Less Right Now

The American Association of Clinical Endocrinologists have done all the work for you. One click. 

Go here and click the Take Action button to send an email to your representative and two senators for your state. The email body is from an endo’s viewpoint, but you can quickly change it to tell them why your elected representatives should co-sponsor or vote yes for this bill.

You can copy and paste this if YOU have diabetes:

I have diabetes. We need a coordinated action committee for the epidemic that is taking one of every three Medicare dollars for treatment. We need better education for clinical professional and the general public to prevent complications and help those who live with this disease. Please vote yes on this bill.

You can copy  and paste this if SOMEONE YOU LOVE has diabetes:

Someone I love has diabetes. We need a coordinated action committee for the epidemic that is taking one of every three Medicare dollars for treatment. We need better education for clinical professional and the general public to prevent complications and help those who live with this disease. Please vote yes on this bill.

(The AMA, AADE, JDRF, ADA and others all support this bill. I couldn’t find an organization who doesn’t support it!)

That’s all you have to do today.

One click and done.

But every click makes a difference.

Every one.

If you’re interested in doing a little more than one click, I urge you to complete the quick survey over at Diabetes Advocates and help change the world of diabetes one advocate at a time.

And when I say advocate, I mean you.

 

The Rodney Dangerfield of The Body

  • P_Rodney_Dangerfield_1Air head.
  • Big mouth.
  • Red handed.
  • Shoulder to the grindstone.
  • Girded loins.
  • Broad shouldered.
  • Lily-livered.
  • Glass jaw.
  • Gut buster.
  • Navel gazer.
  • Black heart, cold heart, heart of gold.
  • White knuckled.
  • Brass balls.
  • Butterfingers.
  • Thick skin, thin skin.
  • Up to your neck in it.
  • Bent nose, nose for news.
  • Yellow belly.
  • Upper hand.
  • Head in the clouds.
  • All ears.
  • Sealed lips.
  • Twinkle toes.
  • Knuckle sandwich.
  • Gut feeling.
  • Joined at the hip.
  • Naked eye.
  • Long in the tooth.
  • Blind eye.
  • Bare bones.
  • Rule of thumb.
  • Shot in the arm.
  • Deaf ears.
  • Cold shoulder.
  • Green thumb.
  • Elbow grease.
  • Restless feet.
  • Cheek by jowl.
  • Cold feet.
  • Tongue tied.
  • Achilles’ heel.
  • Weak kneed.
  • Old hand.
  • Strong-arm.
  • Spineless.
  • Head and shoulders above.
  • A leg up.
  • A bone of contention.
  • Warts and all.
  • Young blood, bad blood, blue blood.
  • Taking it on the chin.
  • Hair of the dog.
  • Vent your spleen.
  • Baby’s bottom.
  • Hand over fist.
  • Nerves of steel.
  • Sore thumb.

Not one.single.idiom about the pancreas.

 

 

 

“Is The Patient Unconscious?”

356463_9547“911. What’s your emergency?”

“28 year old Type 1 diabetic with a blood glucose of 33 mg/dl after three juice boxes. It’s been over forty minutes and it’s not coming up.”

“Is the patient unconscious?”

“I am the patient.”

Silence greeted me at the other end of the line, then the emergency operator croaked out:

“Wow. All right. Paramedics are on their way. Can you unlock the front door?”

In 1998, I made the first and only 911 call (so far and knock on wood) about my diabetes. Dinner was vegetarian chili and a beer, and before the pump came into my life, it was the ol’ fast and slow acting insulin show. What was injected in was going to be acting for a long time.

I didn’t count on my food not acting at digesting well – or in this case, at all.

While I was living with someone, he worked nights in the ER at a hospital across town. I was alone. A few hours after I finished my meal, I felt overwhelmingly sleepy, so I got up to check my blood sugar before snuggling down into bed.

32 mg/dl.

Before I see a number like that on my meter, I’m not panicking. It’s that fuzzy thought of: “I’m probably a little low,” that turns into: “Oh. Oh. Oh. No.” I’m fine before and then I’m not. All rational thought flies out the window. It’s go time.

The first juice box went down easy. I remember intently studying the carb count on the side of the box, willing that 24g of pure apple to kick into gear. I knew I would need to ingest more than 24g, but it would get me out of the weeds.

I watched the clock. Tick. Tick. Tick. Precisely fifteen minutes later, I checked again.

35 mg/dl.

My inner monologue was a little salty and blue. The second juice box was choked down. Did you know that you can make a game of pulling a juice box straw in and out of the hole, trying not to pull it out of the box? I lost the game a lot, but it was something to focus on as I sat on the floor of the bedroom, blatantly ignoring the rising adrenaline and cortisol levels.

Low blood sugars suck. I’m one of those people who can still function (and I use function loosely, but I can still verbally communicate and stay upright) in a severe hypoglycemic state. I’ve never passed out from a low. In later years, I’ve had severe hypos when I needed assistance and ones in which my muscles contracted involuntarily, squeezing to get that extra glucose out to help save me. (That is NOT a pleasant experience.) But I had someone around to help me.

I was alone. And after the second fifteen minute mark, the meter was reluctant to show me where I was at.

33 mg/dl.

I picked up the phone and called my boyfriend at work.

“I’m low.”

He knew that I wasn’t calling to chat. He worked in an ER and I never called him there.

“How low?”

I explained, rambling a bit about how I was tired of juice boxes, and that I’m still not coming up.

“Here’s the deal, Christel. We can hang up and you can call 911 or we can hang up and I can call 911. Which do you want?”

We hung up. I placed the call and confused the operator with my 33 mg/dl and I’m still conscious and it’s me and not someone else. Paramedics showed up less than 5 minutes later and tramped into my living room with cases of equipment to find me watching late night TV, taking minuscule sips from my fourth juice box.

They offered IV dextrose and a trip in their shiny ambulance to the local ER. I asked them to wait with me for 15 minutes more and retest. We talked about what happened and then laughed at the informercial blaring from the corner.

55 mg/dl.

They stayed another 15 minutes and I admitted that there was no way I could put anything else in my stomach, so if my blood sugar went south or stayed that low, my veins were their playground.

73 mg/dl.

I felt like I won the lottery.

My boyfriend had called a coworker who was in our complex and had just gone off shift to come be with me for a while. She arrived, flirted with one of the paramedics, and hung out while I slowly drifted upwards to 104 mg/dl. We both slept in the living room.

I was diagnosed with severe delayed gastric emptying two weeks later. (I had other incidents after that, none as serious, where I would eat and go low after a high carb meal with a very slow response to treating glucose.) My stress levels were off the chart and the combination of my body rebelling from the stress and my diabetes manifested in this lovely lack of digestion. I was sent home with anti-emetics and some gastric motility drugs, wondering how I was going to live with this.

Happy to say that my stomach decided to work again after a while (and after the stress went away). But that 911 call is my reminder that no matter what, when you need help, pick up that phone as soon as possible.

Why do I tell you this story? Because I almost didn’t pick up the phone.

And no one would have been there to make that call for me.

 

 

The KISS of Diabetes Advocacy

Find your excuse.

  • I don’t have enough time to commit to something that big.
  • I have no idea where to even begin.
  • I won’t make a difference.
  • I’m too shy to speak up.
  • I’m afraid I’d say something stupid.
  • Someone else will do it. 

Do any of these reasons not to advocate for diabetes hit home with you?

Once upon a time, I believed them all. (Well, except for the shy excuse. I’m a little bit of an extrovert. Just a tiny smidge.) Advocacy was this nebulous concept that was done by people who knew what they were doing and that was perfectly fine with me. Let the experts advocate for diabetes. Good for them! They would get something done and I would reap the benefits.

The truth is so very different. Those excuses listed above are balloons… and I am going to help you pop every one of them and show you The KISS of Diabetes Advocacy.

(No, this is not The KISS of Diabetes Advocacy.)

kiss-1800-1396461735

Let’s get The KISS out of the way first.

The KISS of Diabetes Advocacy is this:

Keep

It

Simple

Sweetheart (or Stupid, but you’re not, so it’s sweetheart, so there.)

Keep that in mind while we pop the balloon excuses…

I don’t have time to commit to something that big.

You can be a diabetes advocate in less than a few minutes a day. We showed you that it can be done in about two minutes (or even less.) At the MasterLab held at CWD’s Friends for Life, a three step plan was laid out for you on one webpage. Click, click, click and you’re set with the Diabetes Action Hub. Three quick things to start.

(Take a survey, send a quick email to your representative about two bills that will help all people with diabetes, and sign up to get notified about advocacy actions that you can take in the future.)

You do what you can. No one is asking you to chuck your job and go on the road, stumping daily for diabetes awareness or reimbursement. No one is asking you to spend your days in a monkey suit, waiting in corridors to spend a few minutes with an aide for your Congressperson. Pick what is important to you, but don’t do nothing. You can make a difference in a few minutes per day.

I have no idea where to begin.

The American Diabetes Association does an outstanding job with explaining how easy it is to advocate for diabetes. It’s a great primer if you have no idea where to begin. It’s a great starting place. If you don’t even know why you should advocate. you can look at the list of federal priorities that the ADA has set out to accomplish this year (all very ambitious, and all need help from people like us).

I won’t make a difference.

Think so? You do. Every letter that is written, every call that is made, every tweet, every visit raises awareness of what diabetes is, how it impacts us, and what we need to be healthy. We saw the difference over 300 of us made when we voiced our comments on the accuracy of blood glucose meters to the FDA. Can you imagine what 3,000 comments could do? 30,000?

In the 80s, I threw my insulin, syringes, meter, and strips in my backpack and tra-la-laed my way down the halls of my school. Needed to check? I pulled out my meter. Needed to take an injection? Pulled out a syringe and did it myself.  To do that today would have the administration of any school screaming, some more loudly than others. Imagine not being able to have anyone besides a nurse administer insulin or glucagon to your child or someone you love in a school. It was happening in California. Advocacy changed that. It took eight years, but now trained personnel can help in schools without a nurse present.

Every time you share the difference between Type 1 and Type 2 diabetes, or explain what insulin does, or why you can eat that donut, you are advocating for diabetes awareness. Want to rattle off some statistics? Easy. Here is the full list, but you can memorize this one from the CDC:

If current trends continue, 1 of 3 U.S. adults will have diabetes by 2050.

If that doesn’t freak you out, I’ve got others. Let me know and I’ll send them to you.

Talk about diabetes. The one smart thing I said at MasterLab was this: “Advocacy begins with you.” And by you, I mean you.

I’m too shy to speak up.

Then don’t speak. Write your congressman. Write an article in your community newspaper. Tweet important information and disseminate advocacy actions to others. Do art that can be used in presentations at hearings and meetings that make an impact.

Diabetes Art Day images surrounded Manny Hernandez and me at the Diabetes Technology Society meeting last September. It made an impact.

Diabetes Art Day images surrounded Manny Hernandez and me at the Diabetes Technology Society meeting last September. It made an impact.

People who advocate “behind the scenes” do important things. Put a walk team together. Help raise funds for research or technology that will help improve the lives of people with diabetes. You don’t have to shout with a megaphone to get your voice heard.

I’m afraid I’ll say something stupid.

Know what’s stupid?

Not saying anything and accepting the status quo. 

Was that blunt? As blunt as my lancet is right now because I haven’t changed it in a while.

If you get the facts, understand the players, and find out what your passion is, you won’t be stupid and nothing out of your mouth will be stupid.

What bothers you most about diabetes? Good. That’s your passion.

Then google information about your passion and get information about the facts surrounding it and the key players. (And by players, I mean your fellow advocates or advocacy groups and the people you will need to influence to change the status quo.)

Once you’ve got that, work with your fellow advocates to change the status quo.

Someone else will do it.

That was my biggest balloon excuse. It was so big that it carried me up into the stratosphere for years and years. And then something happened.

I got angry.

And then…

I got angrier.

And then…

I recognized that even people who should know the difference didn’t.

There was no moment in which I decided to advocate. When I realized that I needed to speak up for myself and then for those who couldn’t speak for themselves, it was a no brainer. There is so much to do in the world of diabetes advocacy, so much status quo that needs to be shaken, that I now wish I could do it all.

Which brings me back to The KISS of Diabetes Advocacy. (You thought I had forgotten, right?)

Keep It Simple, Sweetheart.

Start small. Sign up for advocacy alerts. Pick something that that you want to see change. Send an email or a tweet. Ally yourself with others who share that want for change.

If that all feels good, then flex your wings and step outside your comfort zone. I quaked in my heels as I stood in front of a panel of people in Bethesda last year, asking the FDA representative what it would take for them to pull an inaccurate meter or strips off the market. My heart pounded in my throat (where it shouldn’t ever be) and I was sweating, but I wanted to let them know I wasn’t accepting the status quo.

We can all be advocates. Come join us. We need your help.