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Entries in diabetes (78)

Tuesday
Apr092013

Hoping vs Living

I want type I diabetes to be cured. I hope in my heart that it happens in time to benefit Arden, but I do not spend time hoping for a cure. I try not to confuse hoping with hope, though it's difficult on some days not to.

This morning while I was doing maintenance on Arden's Day, I noticed that a Google user found my blog by searching the phrase, "how close is a cure for type 1 diabetes" and my heart ached for them.

If you are that person, or more likely, if you are a person who has diabetes or loves someone who has diabetes...

Please know that I have felt like that too. I've wondered in my mind, cried out loud and franticly searched the internet for the answer to the only riddle that matters. I think that it is immensely normal to hope and thoroughly human to fight for that hope to become your reality. I relate to the feeling that would lead you to a web browser. I know how difficult it was to type your query.

You are not alone. I understand. I know what it feels like to want to blur the line between hope and the grand amount of fortitude that is required from you every day - I know that you need a break. The only advice that I can lend with confidence is the advice that works for me. Don't give up. There is nothing worse than giving up. Fight. Try to be hopeful without hoping. Be strong when you are anything but. How do you do that? You don't give up. When that doesn't work... when you drift away from reality and hoping seems like a great place to escape to for a little while... Find someone who understands, let them lend you the strength that you need.

There is an entire community of diabetes advocates online that understands how you feel. Find them. They are on Twitter, FaceBook, they write blogs - find them.

Another great place to meet people is on the DSMA twitter chat that happens every Wednesday night at 9pm EST. It's run by a wonderful woman named Cherise and is a great place to meet other people just like you. Learn more about DSMA at this link.

We don't live with diabetes, diabetes lives with us. We have the power. On the days that it feels otherwise, find someone who understands because nothing is more powerful or more renewing than community.

Monday
Mar112013

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.

 

Friday
Mar082013

The Life of a Stay-at-Home D-Dad: Scott Benner’s Story

I was interviewed recently by Laura K. from Discuss Diabetes about blogging, advocacy and being a father. Laura and I talked for over an hour and we covered some topics that I don't usually get to write about here on Arden's Day. 

 

In the book Scott tells the stories of what he saw as pivotal moments. “I wanted to leave people feeling uplifted, more connected with the idea of family being most important,” he said. “It comes from recognizing there’s probably nothing more important that you can do than just watch your kid at baseball practice for five minutes because it means more to him than you can understand.” 

 

Laura closes the interview by giving her thoughts on Life Is Short, Laundry Is Eternal. They are among the most touching words that I could imagine hearing. I hope you have a few seconds to check it out.

 

Speaking of my new book that arrives on April 2nd...

I've added a review section to my book page. Look for recent reviews by Manny Hernandez from TUDiabetes and Chris Snider from the Just Talking PodCast.

I'm being told that the eBook formats often become available weeks before the launch date - I'll let you know when you can download.

Those wanting a paperback take note: Amazon and Barnes & Noble have both dropped the price for LIS to $9.47. If you are planning on buying the book, this is the lowest price that I've seen yet. Pre-Orders should arrive at your home on the release date. Links to both sites, as well as Canadian and UK Amazon are here.

I'm humbled and a bit taken aback by the amount of requests that I'm receiving for autographed copies of LIS. So far we only have one signing scheduled but I'm working on getting more opportunities set up. I'm also trying to work out a way that I can provide copies directly without adding tons of shopping costs. Stay tuned and follow Life Is Short on FaceBook for updates.

Have a great weekend!

Scott

Tuesday
Feb122013

The Diabetic Problem

Arden's Cover Page

It seems that this is the day. Arden asked us last week if she could post something that she wrote at school on Arden's Day. After some serious consideration, we said yes. The following is Arden's 3rd grade writing project. Her assignment was to write a piece of Realistic Fiction, a story that could feasible happen. Be sure to read Arden's Author's Note (Her words, she actually said, "I want to write an author's note after my story) that follows the story.

 


'The Diabetic Problem' by Arden Benner

 


Ever since Emme's doctor told her she had diabetes she changed. Now she always had to test her blood sugar. She has to give herself insulin and when someone asked what she was doing, she always had to tell them. She was getting TIRED of it! The worst part of all, some kids even made fun of her! She did not want to test her blood sugar anymore or give insulin to herself. But what would she do about her diabetes... What would she do?

 

She went to school the one day and decided to sit at the "cool" table. She did not test her blood sugar or give herself insulin. In the middle of lunch she passed out on the cafeteria floor! One of the girls that always picked on her, Mackenzie, went for help. Emme went right to the hospital. She woke up the next morning and her whole family was there. She saw something in the corner of her eye. She looked to her right and saw the girl that helped her when she passed out.

Emme looked straight at her and said, "Thank you". The girl looked right back at her and replied, "you're welcome", then the girl gave Emme a hug. Emme asked, "why did you help me, you hardly know me?"

"I may not know you but I've been through this before, my dad has diabetes" replied the girl. "Just last week my dad had a scary incident like you did in the cafeteria".

"Really", replied Emme. The girl hugged her again.

The next morning Emme woke up surrounded by her family. She had a great idea and said, "Maybe we should all go into school including Mackenzie and... TELL THEM WHAT DIABETES IS"

Everyone thought that was a great idea and so they all went to school that day.

Now they know what it means. They asked so many questions. How did you get diabetes? Is there a certain reason that you have it? Why do you have it when no one else in your family does?

"All I know is diabetes choose me... I didn't choose diabetes", Emme responded.

From that day on her classmates were a lot nicer to her.

 

Author's Note: Hi this is Arden. I am going to tell you a little more about my story. This story was kind of based on my life, but I have never been treated this way. I want to thank my dad for making this blog and for telling the kids in my school about diabetes so that I don't get treated poorly like the girl in my story. You should not read this story and think that it was just cute and kind. I think this story is more about how nice my family is and how well they treat and help me. I want to thank my dad Scott, my mom Kelly and even my brother Cole for taking such good care of me. Thank you. - Arden Benner

Emme and Mackenzie

Saturday
Feb092013

Life For A Child

 

The diabetes online community provides support for those who are a part of it. We cheer each other up and on, lend advice, create friendships and so much more. We are people helping people live better with diabetes. I speak about the power of the DOC all of the time, it's staggering to witness it's reach and impact. It's helped me more times than I can count and I bet it's helped you too. 

A few thoughtful folks in the DOC got together recently and began to wonder who else our community could help. How far can our love reach, can it extend beyond my twitter feed, past our FaceBook pages? Can the power of the DOC touch a child in a country that is an ocean away? I think it can. I'd bet on us any day of the week. So please take a moment, read on and find out where and how your love will be used to save a child with diabetes. 

 

What is the International Diabetes Federation's Life of a Child Program (from the IDF website)

Donations to the IDF Life for a Child Programme are carefully directed to key areas of diabetes care and management so that established paediatric diabetes centres and associations can provide the best possible care, given local circumstances, to all children and youth with diabetes in developing countries.  

Just $1 a day provides a child with:

  • regular insulin
  • quality blood glucose monitoring equipment (meter, strips, lancets)
  • essential clinical care
  • up-to-date diabetes education materials
  • specialised diabetes training for medical staff 

The scope of what needs to be done is vast.  Diabetes management is complex. While the first step is getting access to insulin, it needs to be followed up with education on managing diabetes, extending sustained care and also improving the quality of care. This takes both time and ongoing resources, so donations such as yours are crucial to the success and longevity of the Life for a Child Programme. Thank you for your contribution.

Dr Graham Ogle, LFAC General Manager.

 

Please consider making a one dollar donation to the IDF's Life For A Child program right now by clicking on this link and join the DOC in their Valentine's Day effort to Spare a Rose and Save a Child. Give the one you love eleven roses this year and then send the money you save to a child that desperately needs insulin. 

Please share this page with the DOC and beyond. Then write about Life For A Child on your blog, FaceBook wall or twitter feed. Click here for more information on how you can help. Let's take this DOC thing out for a spin and really find out what it can do!

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