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Entries in Advocacy (48)

Thursday
Oct182012

Big Blue Test

Join the movement!

Exercise is good for you. You know that. But did you know that the average Big Blue Tester has seen their blood glucose level drop 20% after 14-20 minutes of exercise?

And if that isn’t enough reason to get active, every time you enter a Big Blue Test you help us get one step closer to our goal of 20,000 entries. If we hit our goal, the program sponsor will donate $100,000 to organizations that provide life-saving supplies and services to people with diabetes in need.

Do the test as often as you can between today and the end of November 14th. 

 

Big Blue Test

Tuesday
Oct162012

Arden's 2012 JDRF Walk

Later this month Arden will be walking for the seventh consecutive year to support the Juvenile Diabetes Research Foundation. She has walked every year since her diagnosis in 2006 and her efforts have raised tens of thousands of dollars to support the JDRF!

Arden's First JDRF Walk 2006

Making Walk Shirts 2008

In addition to walking for the past six years, Arden has attended multiple Promise Meetings, appeared in a local JDRF commercial and more to support the good work that the JDRF does. If you would like to walk with Arden this year or make a donation in honor of her efforts, please see the information below.

 

We would be ever grateful if you were moved to make a donation, but it would be even more wonderful if you are able to join us for the walk.

You can make a donation or join our walk team at this link

 

Walk Date: October 28

Location: Bucks County Community College - Newtown, PA - Google Maps Link

Time: Walk begins at 10, we usually arrive between 9:15 and 9:30

Please let me know in the comments if you plan on walking so I can contact you the day before with meet up details.

Have a wonderful day and thank you for your love and advocacy!

Scott

Wednesday
Oct032012

I know what the FDA will say and I don't care

I've been sick since last weekend. It's mostly a head cold but it tried really hard to get into my lungs, I was able to fight it off and am feeling better today, but that's not the story.

Three nights ago it hit me the worst, I wanted, no I needed to sleep, but Arden's BG was high and being very stubborn so I wasn't able to until about 2:30 am. On a day when I wasn't sick I'd take 2:30 with a smile, but like I said, I wasn't feeling good and so it was tough. But I survived. With about five hours of sleep under my belt, the next day drug on. I was a bit of a wreck if I'm being honest and my cold was doing it's best to advance into my chest. I needed sleep badly now, so I guess you can imagine what happened.

Arden got the cold too, now I knew why her BGs were so stubborn. She stayed home from school and we were sick together. But that night, that second night of my three night tale of woe, it was rough. BGs fought me like a bull and I wasn't able to lay my head down for good until 4:38 am, but I still had to get up at 7:15 the next morning. Now my ass was officially dragging. Every time I tried to sit down yesterday my eyes would close so I stayed busy doing household chores. When the evening came Arden was feeling much better, she didn't get it as badly as I did thankfully and I was hopeful about her BGs and my chances for some overdue rest. 

Before bed last night Arden's BG was a respectable 123 on her CGM, 140 with a finger stick and I was smelling sleep. I stayed up for another two hours to make sure she wasn't going to drop unexpectedly and sometime around 12:30 am I set a temp basal restricting her overnight basal rate because I knew I was going to fall to sleep and stay that way. It makes me nauseous to admit this, but I was happy to trade a waking 190 for seven hours of sleep.

This is what I woke up to.

 

Now I know what the FDA will say to my next statement and I don't care. We need something to help us. After a while you stop hearing the beeps and feeling the vibrations. Other days you may just be too tired or sick to react. For all that continuous glucose monitoring brings to the daytime, it just doesn't cut it after we lay our heads to rest.

Arden's DexCom receiver, your DexCom receiver should come with a dock, maybe it's an alarm clock too. I should be able to buy a companion clock for my room, for our living room, there should be an app. F&%king alarms and whistles and lights should blare in my ears and shine in my face. Hell I'd wear a bracelet that shocked me when Arden's BGs fell too low. Give me a Rube Goldberg that bashes me in the face, give us something... anything.

 

 

Now I am quite sure that the manufacturers of CGMs understand how much an alert system of some kind is necessary and this isn't the first time that I or others have ranted on the subject, but I am tired of hearing that, "the FDA won't allow that". I don't give a damn that each piece of tech that you add to a process makes getting clearance nearly impossible, just someone get the nerve to try. Walk defiantly forward and try to break new ground. Please.

Do it before I die of exhaustion, do it before Arden dies in her sleep. Do it before it decimates another life, another family. Be bold so we can not just live, but live better. Look closely at the next picture. Study the graph and then look at Arden's little face in the shadows. Imagine all of the people living with diabetes that are tired, battling a cold or just would love, absolutely f&%king love, a decent nights rest and then do something to help them.

 

I know what the FDA will say, they may say that if the signal is carried by my home WiFi for example then my home WiFi would need to be verified so it's not possble. They may say any number of a thousand things, but I don't care. Tell me where to sign my rights away. I promise I won't sue anyone if my router happens to stop working on the night my daughter's BG gets so low that it harms her. I'll take the chance, it's mine to take. Stop restricting great ideas from seeing the light of day because of what might go wrong. Something is better then nothing. Right? 

Seat belts aren't 100% effective, I still wear one. Condoms can't promise we won't get sick or pregnant, but we wear them because it gives us a better chance. This isn't just an issue for young children and their parents. This is also about husbands and wives, boyfriends, college kids, it's an issue that effects every person with diabetes and all we want is a fighting chance. 

Medtronic found a way around the problem with MySentry. Sanofi figure out how to link an app with iBGStar. It can be done.

Here is my unsolicited message to every company that has an idea that they are afriad to move forward with because of government regulations: I know you are scared to approach the FDA with innovation, I get it, I really do understand. But I'm afraid to sleep. I'm afriad that my daughter is going to die. People are scared that their wives, friends, mothers, sons will fall to sleep one night and never wake up. We win, our fear is worse then yours. Help us.

Wednesday
Sep262012

My remarks from #ePatCon

with WEGO Health CEO Jack Barrette

Below are my remarks from e-Patient Connections 2012. I was at #ePatCon as a guest of WEGO Health where I was recognized for being the 2011 Advocating for Another award winner. The occasion presented me with the opportunity to speak about what my advocacy means to me. Below are my remarks as delivered.

 

Hello... My name is Scott Benner. My daughter Arden is eight years old and she was diagnosed with type I diabetes just after her second birthday.

Our life with Arden's chronic illness fills my heart with so many conflicting emotions - Feelings that don't seem like they should be allowed to inhabit the same space. Love & pain, anxiety & hope, sadness, personal growth...are just a few of the adjectives that describe my families day.

I open my heart and give a voice to the struggle on my blog to hopefully show the world what Arden's life is like so that others may understand, so that my fellow CareGivers, the ones that don't have this voice or perhaps don't want the attention can know that their pain isn't theirs alone to endure. This is a life that often is too much for one person to bear, but together,..... together we are stronger and more determined then our illnesses.

Social media saved me. When we share, when we let others see our real and honest human struggle... it helps people. It builds community, creates a support system, provides relief, connection, love... and I am recharged by the knowledge that when I write, my words create hope... and I am saved as well.

I think that I was awarded the 2011 WEGO Health Advocating for Another Award in part because I don't write about numbers, I don't pretend to know all the answers, I just say, "this is how diabetes made me feel today... Maybe you feel like that too." And I hope that knowledge, that simple act of letting screwed up feel normal... helps someone to feel anything other then alone.

I am transparent on the Internet because helping others is the only thing that I've found that makes my daughter's illness not seem arbitrary and cruel.

I want to thank Jack and WEGO for this honor and encourage all of you to support social media in anyway that you can. It's so simple that it seems like there must be more to it, but there's not. We are the only ones standing in the way of helping people with the full power and possibility of social media and patient bloggers.

The diabetes online community saved me and I'm doing my best to give others the ability to say the same. All you have to do is ignore your fears and run forward and you'll be doing the same.

Hope lives online.

Thank you...

 

My pictures from ePatCon are available on Instagram, Arden's Day and this PhotoStreamthat I used during the conference to make images available to all as they were being taken. Don't be surprised if you see some familiar faces!

 

Nomination are being excepted now for the 2012 awards and I'm hopeful that you'll consider nominating your favorite DOC writer(s).

 

WEGOhealth covered my lodging expenses and travel for the conference.

 

Wednesday
Sep192012

WEGOhealth: 2012 Health Activist Awards

Below is an email that WEGOhealth circulated announcing that nominations are now being excepted for their 2012 awards. I was honored to be nominated last year and was surprised when I received the first ever 'Advocating for Another' Award. I want to urge you to take a look at their categories and nominate your favorite writers from the diabetes online community. WEGO is a great way to make our DOC voices heard around the Internet.

As a result of my win last year WEGO has invited me to the e-Patient Connections 2012 conference in Philadelphia next week. There I will be recognized as the 2011 winner and get to speak about what my advocacy means to me. So again, please nominate your favorite diabetes blogger so that perhaps another of us can have this and many other great experiences, next year and beyond.

WEGOhealth is covering my lodging expensise and travel for the conference.



Announcing the 2012 Health Activist Awards!

We're excited to announce the start of the WEGO Health Activist Awards Nominations.

This year, we're extending the nomination period and we've added some exciting new award categories. Now's your chance to recognize someone who has inspired you, helped you, or even changed your life this year - nominate them for a WEGO Health Activist Award!

Click to Nominate a Health Activist

Questions? Get all the details on our WEGO Health Activist Awards FAQ page.

We also need your help to share the WEGO Health Activist Awards with everyone in the online health community. Please take a moment to tweet, blog, e-mail, or facebook to let your friends, fans, and followers know how they can get involved. Here's a sample tweet or post to help get you started: WEGO Health just announced their 2012 Health Activist Awards. Nominate someone: http://bit.ly/haawards12

Thanks for participating in the WEGO Health Activist Awards - and for helping us to empower those who make a difference every day.

The WEGO Health Team

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