What do you want from Diabetes Awareness Month?

So November is Diabetes Awareness Month. Okay. Now what?

Aside from building awareness, which is a goal that I hold in high regard, what do you want to happen this month? What change, lesson or tidal shift would you like to see occur after the diabetes online community shines their bright light onto the life of people living with diabetes?

"Something tangible", is always my less than complete answer. But is it reasonable to expect that people who don't live with diabetes have the time or space in their busy lives to commit to understanding a complicated disease? 

Using myself as an example. I am a person who understands how difficult living with a chronic illness can be, I know how important it is to the people who are effected to get their story into the world. Yet, when I see a pink ribbon or a football player trying to kill another man while wearing pink shoes... I just think, "Breast cancer awareness", but I don't really know the first thing about breast cancer. I've never made a donation to a breast cancer charity, except to honor the passing of a friend, and I don't proselytizing about breast cancer awareness.

I'm as aware as I can be, and I can't tell you one thing that my awareness brings to the people whose lives have been forever changed by breast cancer. But maybe that's enough?

Maybe that's all the breast cancer awareness people can hope for, that I know they are out there and that their lives have been impacted in a way that makes them want to teach others about their plight. Perhaps their efforts are more about adding compassion to the world and empathy that is rooted in honest concern. 

Now, if you handed me a magic wand and put me in charge of diabetes awareness, I'd cast a spell on the world so that everyone would know what to do when Arden gets dizzy in the middle of her practice. I'd make it so that each person could feel the insane mix of pressure, stress and fear that I felt last night when I looked down at Arden's glucose meter and saw, "32". I would selfishly turn the entire world into care givers for Arden and each of you. I think that, if I'm being honest, that's what I want from Diabetes Awareness Month - full and complete understanding for my little girl and all of you.

What I expect however, is no more than my reaction to seeing a pink ribbon and maybe that's enough. I hope that it is.

Since I don't have a magic wand, in honor of Diabetes Awareness Month I'm going to dig even deeper and share our life with type I this month in as raw and honest of a manner as my soul can stand. 

It's diabetes awareness month. I'm diabetes blogger. That's my magic wand.

Guest Post: Moira McCarthy on Undiagnosed Diabetes

Know the Signs. Share the Signs.

After I read Moria's post last week titled, Undiagnosed Diabetes and a Plea to Take Action (The one where I go all public service a again), I contacted Moira to see if she would allow me to repost her important words in their entirety. She was happy to oblige. Many years ago I was a parent who was unknowingly watching his daughter slowly die from undiagnosed type I. When we arrived at the hospital the doctors told Kelly and I that we figured out what was happening with about twenty-four hours to spare. They estimated that Arden was only a day away from slipping into a coma. I wanted to share this message as far and wide as possible in hopes that it may help another family to avoid an unthinkable heartbreak. I hope that you link to, like and share this information liberally.

Moira's piece just as it ran on her site last Friday.

Be well,

Scott

A week ago today, a 13-year old boy who lives in a normal middle class town and has smart, caring parents and who is surrounded by teachers and nurses and coaches a friends, died of the complications of undiagnosed Type 1 Diabetes.

And it happens all the time. When it happens, people say all kinds of things. Why didn’t the parents know the symptoms? Didn’t the doctor do a test at his annual check up? How could the school not see?

But here’s the stark truth: We are not properly equipped as a society to keep this from happening. And happening again. And listen: we are America. We have free internet just about everywhere and fresh cupcakes out of kiosks. Yet we don’t have even a basic system of information that alerts parents, teachers, nurses, doctors and just plain everyone to what the signs and symptoms of Type 1 diabetes can be.

Think it only happens to the clueless? Look, I’m not Einstein, but I’m relatively smart. I read lots of parenting books and even edited a parenting publication. I’ve sat down and interviewed T Berry Brazelton and yes, even Dr. Spock (not the Star Wars one, silly!) before he died. I’ve met Fred Rogers and talked parenting, and I always had a mom group for discussions as my kids grew up.

But undiagnosed diabetes very well could have killed my daughter. I shared our diagnosis story HERE but I’ll remind you of this:

Lauren had almost all the classic symptoms of Type 1. Excessive thirst. Urination issues. Weight loss. Irritability. Now let me tick those off in the head of the average parent who has never been educated about the signs of Type 1 Diabetes.

*Excessive thirst: It was the end of summer and a hot one at that. Lauren and her friends were always running around and playing. Yes, she was drinking a ton, but to me, it was the heat. I chug down water as it is. Made sense to me. Even if it was kind of odd.

*Urination issues: I know it sound silly now, but I never sent either of my kids to pre school. I took a lot of heat for that on the playground. Moms were always saying my kids would never catch up and that they’d be traumatized when they started kindergarten because all the other kids would be so well adept and my kids would be floundering. So when Lauren started wetting her bed, a friend said, “I told you that no pre school thing would take its toll.” Kindergarten was the reason. I was a bad mom. I actually believe that. I wasn’t alone there. Her kindergarten teacher – whom I adore and still do – pulled me aside one day when I was in volunteering and said “I don’t think Lauren likes school. She’s constantly looking for reasons to leave the room. It’s the water fountain or the bathroom. You might want to talk to her.” This is a top-notch teacher, by the way.

*Weight loss: She was growing taller. And thinner. I (believe it or not if you know me now) was always rail thin. My husband still is. So to me, it was just how she was growing. It was not until her school pictures (taken three days before her diagnosis) came back; Lauren with her weak smile and her clothes almost falling off her, that I felt shame. How could I not have seen it? But I didn’t. When you are with a child every minute, the change might not be as noticeable.

*Irritability: The week before her diagnosis I was absolutely convinced I was a horrible mother and that somehow, I’d done something to morph my delightful child into a monster. At my older daughter’s soccer game, I was so at wit’s end with her behavior that a friend separated us and took her for a ride. A few days before I had lunch with my dear friend Jean. Lauren came along. Jean bought her a giant cookie and Lauren said she’d take it home. When Jean got home she found it in the car, forgotten. And thought about how oddly Lauren had behaved that day. Not like the kid she knew. When it all went down Jean told me she remembered thinking “strange. Something is strange.” Jean has four amazing kids Even she did not see the connection.

It was all right there in front of me. My daughter did not die. That god in heaven she had an annual check up scheduled (which I almost carried her into and she was rushed to the hospital from). Would she have woken up the following morning had I not had that appointment? Thank goodness I’ll never know the answer. And if she had not had that appointment, would I have caught on enough to call her pedi? I don’t know. (I will say this: the moment I got in the door of the pedi’s that day and rattled off what was going on, they KNEW. That office would never have not made the diagnosis if I’d been educated enough to know the symptoms).

So let’s say her check up had been six months before. Would a screening or test at that have shown Type 1? Probably not. Type 1 can come on slowly, but it usually comes on pretty quickly. So while I absolutely believe that screening should be done at each and every check up, it’s not nearly enough.

What we need is a way for everyone to know the symptoms. So share this. Share it with your teachers, your nurses, your doctors and your friends. Any time you have a friend with a child who has a stomach bug or even one symptom, mention Type 1 diabetes and ask them to read up on the symptoms.

And to take it a step further: call on all the diabetes centers, programs, charitys and groups to step up their symptoms awareness programs.

Do this: Become vigilant. Overreact. Obsess if you want. If you know someone who you see symptom(s) in, force them to take action.A blood glucose strip costs a buck. I’d pay that times a million to keep that person alive. Because even if we just save one single child from a completely unnecessary death, we’ve changed the world.

I’m a caring, capable and educated mom, and yet: It could have been Lauren. Luck is what saved her. Let’s save the rest of the world with something more solid: Knowledge. We are better than this. Let there not be one more unnecessary, completely avoidable death from diabetes.

Spry's D-Hero Interview: Scott Benner

Nita Cure is on Twitter @NitaCure4T1D, she is also the creator and mod of @thecandoc.

Spry Publishing (my book publisher) is featuring interviews with several different people from the D.O.C. for Diabetes Awareness Month. They recently asked me who my D-Hero is.

There are so many heroes in the diabetes community. Bloggers who share so that others can be comforted, parents who don’t sleep, and people who lead by example. Every person living with type 1 diabetes is a hero. These people do something brave in the name of their health every second of every day.

But if I had to pick just one person…

You can read the rest of my answer on Spry's blog. 

I'm Blue

Our 2nd JDRF Walk shirt, circa 2007

Today is the first Blue Friday of Diabetes Awareness Month. Wear something blue today and then tell a stranger why you are. Continue throughout the month to wear blue, and each Friday of the year.

Wear blue, spread the word!

Follow the hashtag #BlueFridays on twitter.

What is Awareness?

I'm as hooked into the health and wellness world as I can be, and I had no idea that November was not just Diabetes, but also Lung Cancer, Epilepsy, Hospice Palliative Care, COPD, and Pancreatic Cancer awareness month. This information really made me think. I imagine that the people in those other communities are putting a lot of effort into raising awareness... how did I not know? More importantly, is it possible to get these messages to a broader audience, and if we succeed, does the message become watered down? 

What does creating awareness mean?

A few weeks ago I saw athletes wearing a lot of pink, that made me think of cancer. Is that what the campaign is intended to do? I did think about people that are affected by cancer, I didn't make a donation, I didn't read about cancer... I just thought about it. 

Today President Obama proclaimed November Diabetes Awareness Month. His remarks end by saying,

I call upon all Americans, school systems, government agencies, nonprofit organizations, health care providers, research institutions, and other interested groups to join in activities that raise diabetes awareness and help prevent, treat, and manage the disease.

Now I think it's truly wonderful that the President did this, but what does the act accomplish? Who does it reach? When it does reach someone, do they have a similar reaction to when I see football players wearing pink? Will someone think about diabetes for a moment. How long does awareness take to grow, and what does it look like when it has matured? I'd hate to think that ten years from now all of our efforts culminate with a guy catching a ball while wearing blue gloves.

I'm not sure that hearing a sports commentator say, "Jones just made that catch with blue gloves Jimmy... did you know November is Diabetes Awareness month...". I mean that'd be really cool, and would indicate progress, but what is the tangible outcome? Perhaps this is the best anyone could hope for, and the end of what is reasonable?

What do I mean?

There is so much valuable information in the world that I wish I had time to devour. So many people touched by so many challenges. I don't have the luxury of time that would allow me to be aware of them all. Even if I magically found extra time, I can't in all honesty say that I'd use it to read up on COPD for example. It's with that said that I'll admit to not knowing what 'creating awarness' means, even though I spend a good part of my life trying to do it. 

I want everyone to understand, but I don't think it is reasonable for them to. I want every teacher to know, every bus driver to be ready, every person I meet not to say something ridiculous about diabetes. I just don't know if it's possible, or legitimate, to expect. 

Diabetes Awareness Month always makes me wonder if my efforts are focused in the right direction. I'll be spending some time this month thinking about my advocacy and awareness building efforts. I hope to come up with answers to the questions I raised here. Please add your thoughts if you feel so moved. 

There are so many wonderful and loving people in our community, and they are each motivated by the purest of intentions. I wish that all of our efforts and energy could create progress that we could hold. I won't be satisfied until I hear the sentiments and understanding that emanate from within our circle, understood and reflected from outside of it.