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Entries in Advocacy (48)

Thursday
Apr182013

Guest Post: I wrote a piece for WEGO Health about the Power of Communication

From the WEGO Health Blog

WEGO Health is proud to announce the recent publication of Scott Benner’s first book: Life is Short, Laundry is Eternal: Confessions of a Stay-at-Home Dad. Scott is the 2011 winner of the WEGO Health Activist Advocating for Another Award, and an amazingly engaged member of the WEGO Health network. In honor of this outstanding accomplishment, WEGO Health is giving away three copies of the book to members of our community. Today is the last day to enter the contest, so head on over to our Facebook page and share today’s post about Scott’s new book for your last chance to win a copy.  Not a big Facebook fan? You can also retweet WEGO Health to enter!

 

I hope that you can take a few moments today to read my guest post over on WEGO Health's blog. Here's a snippet of what I wrote:

 

It’s possible to face your challenges alone; I know that because I tried. But eventually the burden becomes too heavy and it can begin to drag you down. Alone you are one person pulling a mountain, but together, together we are unstoppable. On the days that are too much for me, I look to others to find the strength to carry on. Those people, those sometimes faceless friends that I have found online, they hold me up until I can stand again. Before I know it, I’m fine and ready to help them during their tough times.

 

WEGO is giving away three copies of my book today when you retweet or share their blog entry - good luck! Hey, even if you don't win today there is still time to enter my GiveAway for a signed copy of 'Life Is Short'.

Wednesday
Apr172013

What have you always wanted to say to your child's teacher

Is there something about type I diabetes that you always wanted to say to your child's teacher but just couldn't? A fact or maybe a personal story? Have you ever dreamt of telling the administrator (that looked at you cross when you asked for an addition to your child's 504 plan) that you haven't slept through the night in countless years? Have you even once considered telling someone to go $%#@ themselves but instead smiled and nodded?

Tomorrow I will be giving a workshop at the Hamilton, NJ Barnes & Noble to fifty teachers about 504 Plans from the families perspective. We'll be talking about why I think that forming good relationships is so vital for not just the child, but the family, the school and the educator.

If you have something that you'd like me to pass on into the world, something that you think would help an educator to better understand our lives - I'd love to carry your message to them. 

I genuinely believe that if the school could just get a glimpse into the world that we live in, they would become better partners in our children's education... and not just for children with type I diabetes.

There are so many families that would benefit from that understanding. Tomorrow I'm hoping to send a message that will reverberate beyond the few districts that will be represented. I want to leave them with a story that they will be touched and informed by, one that they will want to retell.

 

More information about the event is here on Barnes & Noble's website.

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.

 

Tuesday
Feb262013

Insulin to Carb Ratio

It doesn't matter if you infuse insulin with a pump or inject, you probably know how many units of insulin covers one carb. We use multiple Insulin to Carb Ratios (IC Ratio), in the morning Arden's IC is 1 to 16. One unit of insulin, for every sixteen carbs consumed. Her lunch, dinner and evening ratios are all slightly different. 

Two weeks ago Arden began experiencing unusual BG spikes after lunch, I'm happy that this happened, not because I want to see her BG high but because the anomaly caused me to draw a mental line between these new lunch spikes and a similar spike that I see too frequently after dinner. Post dinner spikes have been an ongoing issue for us this year. I was certain that they were happening due to bad carb counting but this new situation jarred something loose in my head and allowed me to see the problem from a different perspective.

I had become lulled into a false sense of calm by consistently good BGs from other times of day. Those triumphs clouded my ability to see simple issues that caused BG spikes, spikes that shouldn't have been difficult to diagnose. I made a mistake, focusing too much on the food in the equation and ignoring the insulin.

 

Diabetes: "Knock, Knock..."

Me: ("I'm just going to ignore that and see if he leaves")


I wonder now if I didn't subconsciously just need a break, maybe I didn't have enough energy to tackle another diabetes riddle. Whatever the reason, I figured it all out the other day... the answer ended up being so simple that I'm now annoying myself by retelling the story. 

Arden's insulin to carb ratios needed to be changed, one quick adjustment is all it took. I'm still fine tuning the dinner number and the breakfast ratio needs a little help from a temp basal but her BGs haven't been going above about 160 (CGM) after lunch or dinner since I made the adjustments. Everything has been so quiet around here for the last few days. No crazy highs, no panic inducing lows... it's almost too quiet, but I'll happily take that calm for as long as it lasts.

I'll be writing more this week about other simple adjustments that make a huge difference. Don't be afraid to make small changes, you can always put them back if they don't do what you expected. Please remember to record the old numbers before you make any changes in your pump.

 

Don't forget what the bottom of the site says... Always consult your doctor before making changes to your health care. I am not a doctor.

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