melissa-benesch

Diabetes Spotlight – Melissa Benesch Discusses the DOC

Happy Friday to everybody.  This is week two of the new Diabetes Spotlight series, where I will be hosting guest posts or interviews of those that are advocating for diabetes either offline, or even online via social media, but without a blog.  Give them more than 140 characters.

Today’s spotlight is on Melissa Benesch, which many of you will already know her from Twitter @MelllBe.

I asked Melissa the question, “What has the DOC done or meant to you, in your first year of having diabetes?”

Please enjoy. (more…)

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grayson-wilson

Grayson Willson Interview – Type 1 Diabetes Advocate

I recently came across an online news article during my weekly roundup of news articles featuring diabetes topics.  I like to find articles about people who are doing great things in their community and may not have a blog or twitter account with a huge following, so we can all try and help support them in their advocacy.  Last week I saw this article from 10tv.com.  I encourage you to read the short news story, but a brief summary for context of this interview below.  Grayson was participating as a Patient Champion in the Nationwide Children’s Hospital in Columbus and wanted to help spread education and awareness of Type 1 Diabetes.

I think that this is awesome that she did this and I knew instantly that I had to interview her and introduce everybody to another awesome diabetes advocate!  So, without further delay, the interview.

Please introduce yourself (name, twitter, blog [ if any], and area you are from.

My name is Grayson Willson and I’m from Dublin, Ohio

When were you diagnosed with diabetes?

I was diagnosed on January 8th, 2009 when I was 8th grade. I was 13 at the time

 Could you please give a few details about the diagnosis?

After getting a severe case of strep throat on Thanksgiving of 2008, I became frequently thirsty and was always urinating- the classic symptoms but they were easily overlooked. In December alone I lost thirty pounds. On my return back to school after the winter break, I became nauseous and went home. When nothing further happened, my mother was about to return me to school when I began to uncontrollably vomit. We immediately went to my pediatrician who took a urine test and discovered I was a diabetic and my blood sugar was in the 700 range. She said, “Pack your bags; you’re going to the hospital. You’re a diabetic.” The initial shock was ignorant at first- none of my family had any history of diabetes and we had no clue what it meant. We never assumed it would change all of our lives forever.

Can you explain briefly to the readers what the marathon event was and how you came up with the idea of educating people about diabetes?

I was asked by Nationwide Children’s Hospital in Columbus to represent one of the miles in the Columbus Marathon- also known as a patient champion because that was the hospital where I was diagnosed and I currently volunteer there. As a patient champion I was given my own mile to theme and decorate and motivate the marathon runners. I had mile 10, and decorated it as a Candyland. I chose this theme because I felt it was important to show that Type One diabetes doesn’t have as many restrictions as many people believe. Also, every tenth of a mile we had signs with fun facts about type one to educate the runners since many people are only aware of type two. I jumped at this opportunity because I am all for the education about type one because of the lack of it. Type two is a huge issue today with obesity rates in America and I find myself constantly explaining type one and the differences between the two types. I’m sure any type one can agree that we get tired of being told we can’t eat something that we can or that people “hope we get better with some diet and exercise”. I feel that if we are going to hope for a cure, people need to know about our disease and our daily struggles. The more people know and are educated on it, the more change we see. Breast cancer and leukemia awareness foundations are great examples of this and I hope one day that type one foundations can be at their level.

In part of the online news article that I read initially, you mentioned your frustration with people not understanding the different forms of diabetes. What other ways have you attempted to educate people about type 1 diabetes? Have you had any roadblocks in attempting to spread education to people?

I do my best to educated people by getting involved. My family and I are very active in our local chapter of JDRF and we put together events that raise money for a cure and also teach people about type one. I’m willing to tell my story to anyone who is willing to listen, I actually love it. I will do anything I can to be the person to finally get Type One diabetes one the publicity it deserves. Type two in general would probably be the biggest roadblock I have. When I explain type one to people, generalities about type two are constantly interfering with that. I actually get really frustrated that their names are so similar, and would love to have that changed seeing as they are really quite different, but I’m not sure exactly how I would be the one to accomplish that… But it’s a wish ☺

You mentioned that three students in your school all have type 1 diabetes, please provide insight on the support that you all are able to provide each other.

We are often checking up on each other at school. We all have to go to the nurse when we eat at lunch, or when we’re having a low or high. When one of us gets a new utility or something, we show the others and it’s a neat way to learn about the different things out there and how they work. We make sure to have fun with it too- seeing who has the better glucose or who has the better snacks. I’m sure many people can relate to trying to make a game out of it- sometimes I’ll go in the nurse saying “I’m really high and I feel sick.” The nurse, of course, knows I’m talking about my blood sugar. But other students who don’t know who I am always display priceless faces. Diabetes doesn’t always have to be so bad.

Does this make your parents feel more comfortable and safe knowing that there are others at the school with type 1 diabetes?

Having other diabetics in the school are most definitely beneficial. I was the newest diabetic out of all of them and they helped me with new situations I dealt with like my transitions from shots to an insulin pump. With them being there, the district nurse has become very familiar with our disease and how we manage it. I’ve heard about diabetics being the only ones in their entire school district with little experience from any nurses or aids and I would suggest to them that they look on type one diabetic forums where they can ask other diabetics questions they may have. My dad found these extremely helpful when I was first diagnosed.

I particularly loved the idea of decorating with candy during the marathon to show that people with diabetes can have sugar. Did you receive a lot of questions about this and questions about why you chose this theme?

Surprisingly, a lot of people understood. I would just say, “My theme is Candyland to prove myths about diabetes wrong” and they would get it. I’ve been asked more questions about what I can and can’t eat outside of the marathon especially when someone witnesses me bolusing (this was just autocorrected to blousing. Even Microsoft Word doesn’t understand hahah!) for the first time. Easily I can put together a list of FAQs I’ve come across in the past almost four years- “Does that hurt?” “What’s that in your pocket?” “So that’s like, in you??” “Do you sleep with it?” “Wait, so can you eat that?” “Is that bad?” I can go on, but I bet you completely understand.

What words of advice would you like to give to those who would like to “do something” in their community to support diabetes, but don’t know how or what to do?

I would say get involved with JDRF. The American Diabetes Foundation is great also, but it encompasses both type one and two. I want to turn my focus to type one and, of course, educating people on it. Throw together a easy fundraiser- it can be anything from a bake sale to a night of ice skating to bingo. We always say think of something you love and give it meaning. I love art, and made an art piece for the hospital to use as an auction item for their fundraising. It really doesn’t need to be as complicated as people think. If that’s not someone’s style, just teach a few people about type one. Friends, family, classmates- every person counts.

Any other last words of wisdom or encouragement to the readers?

I was diagnosed when I was 13, a really odd age for type one. At first it was rough because I had lead a normal life and it was much harder adjusting to a new one as a teenager than it would’ve been as a child. But what got me through it was that I decided that I wasn’t going to let this disease beat me- that I got it for a reason. Turn your weakness into a strength. Being diabetic makes me unique; it makes me who I am. I would suggest that all diabetics be proud of who they are because we are strong people who got dealt a rough hand. You just have to learn how to play your cards right.

** On an additional side note. Grayson’s father has mentioned that he will attend a #dsma chat, so please be sure to welcome him like all other newbie #DSMA attendees.

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bennet-dunlap

Bennet Dunlap FDA Follow Up

Last week there was a guest post / interview with Bennet Dunlap from Your Diabetes May Vary the FDA.  As promised, Bennet was going to answer a few follow up questions from you all and also add some additional details to a few things he spoke about last week. Since a lot of this FDA stuff can be overwhelming, I am breaking this follow up into two separate parts, today and Monday.  There are a lot of links here, so I suggest that you open them all up and then bookmark them or just bookmark this post and come back to the next link after you were able to read through the previous one. Well, let’s get to Bennet’s additional answers. (more…)

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Wendy 1

Diasight: Diabetes Intuition

For the final day of Diabetes Parenting Week, we have a great guest post from Wendy Rose.  I met Wendy at Roche and noticed her passion and her motherly instincts when it came to the diabetes of other people.  So, without any more delay, here it goes.

Wendy’s oldest daughter was diagnosed with Type 1 Diabetes in 2005 (age 2) and Celiac Disease in 2008 (age 5).  Wendy was diagnosed with Celiac Disease in 2009.  She documents her family’s journey with Type 1 Diabetes and Celiac Disease at www.CandyHeartsBlog.com.  Feel free to find her on Twitter @MrsCandyHearts or connect on Facebook to stay in touch! (more…)

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Lorraine and Caleb

The Summer-to-School Transition – Lorraine Sisto

For day two Diabetes Parenting Week, we have another great guest post from Lorrain Sisto.  Let’s get right into it.

Lorraine is the mother of three children: Colin, Caleb and Lila. Caleb was diagnosed with type one diabetes at the age of three. He is now nine. Lorraine and Caleb both share their stories at www.thisiscaleb.com. You can also find Lorraine on twitter as @colcalli.

Lorraine is currently serving on the Board of Directors of the Diabetes Hands Foundation and the Board of Directors of Diabetes Community Advocacy Foundation. You can also find her co-hosting the DSMA Live Parents Talk radio show every other Monday night with Bennet Dunlap of YDMV.   (more…)

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scott-benner-ardens-day

Letting Kids be Kids Even with Diabetes – Scott Benner

For the first day of Diabetes Parenting Week, I am honored to have Scott Benner from Arden’s Day.  Below is a brief bio on Scott, and then right after is his post on Letting Kids be Kids Even with Diabetes.

Scott Benner began his life as a stay-at-home dad when he and his wife Kelly decided to give role reversal a try after their son Cole was born in 2000. Some years later their daughter Arden was diagnosed with type I diabetes just after her second birthday in 2006. Scott began writing about life as a type I diabetes CareGiver on his blog ‘Arden’s Day’ soon after.

Scott’s book, ‘Life is Short, Laundry is Eternal’, from Spry Publishing, will be on shelves in April of 2013. You can follow Scott on FaceBookTwitter, Instagram or any number of other social media portals by clicking on these links or going to his blog www.ardensday.com and choosing the ‘social’ tab near the top of the page. (more…)

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Diabetes Parenting Week

After having a chance to speak to several different care givers and parents of children with diabetes, I formed a whole new respect for them. Not to say that I didn’t haven’t respect for them already because I obviously did. It’s just that I began thinking about what I would do and how I would act if I had a child with diabetes myself. So, the idea came to me to have a special week dedicated to these caregivers and parents.

That’s where diabetes parenting week is beginning. Throughout this week you are going to see guest posts from parents of children with type 1 diabetes. I will introduce each one of them the night before and day of their post.

Tomorrow you will hear from Scott Benner from Arden’s Day. I had a chance to meet Scott last month and I instantly was intrigued by his stay at home dad lifestyle and taking care of his children. It was a clear, obvious choice to have him write a guest post.

So, come check out the post tomorrow.

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bennet-dunlap

Interview with Bennet Dunlap – FDA

As I mentioned yesterday, I have a lot of questions when it comes to the FDA and how I can be a better advocate and what can I do more?  I figured that if I had these questions, that I wouldn’t be the only one, so I decided to interview Bennet Dunlap.  There’s not much of an introduction that I have to give here, just read on.

This is a long post, but trust me, it is worth reading every word.

There is a followup post to this scheduled for this week, but we need your help in order to make that post happen.  If you have any questions, comments, concerns or anything else, please leave a comment or send me an e-mail via the contact form with your follow up questions for Bennet and we will post the answers next week. (more…)

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fda

FDA – Where to Begin, What to Do

As you may recall, I attended the Roche Social Media Summit last month in Indianapolis. This post is not 100% about that event, but a common theme and topic of discussion was the FDA. Whether it was a discussion of people being unhappy about their processes, or products being released 4 years earlier in Europe before they make to the States, or they feel overwhelmed and discouraged that they can’t read the documents and don’t know what they can do to help the FDA.

These are also all questions and concerns that I have. I have always wanted to be able to learn more about the regulation and governmental part of the diabetes industry, but I have always felt overwhelmed when trying to read any sort of FDA documentation. I always felt that these documents purposely add big and confusing words at the beginning to make me click the X button right at the very beginning. (more…)

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Chelcie Rice - Diabetic Comedian

Interview with Chelcie Rice – Diabetic Comedian

I recently had a chance to interview Chelcie Rice, a type 1 comedian.  You may know him on Twitter as @ChelcieRice (Diabetic Comedian).  Please take a chance to read on and learn more about Chelcie and his diabetes.  If you have any additional questions that you would like to ask him, please leave a comment and I will make sure that we get an answer for you.  Here we go…

 

For those that may not know who you are, please give us a quick introduction of who you are and what you do.

Chelcie Rice, Originally from Toccoa, GA (you’ll have to Google it) T1 diabetic. Been doing stand up comedy for about 12 years now.

When were you diagnosed with diabetes?

When I was 25

What were some of your first reactions when you were diagnosed?

I honestly didn’t know anything about diabetes. I didn’t even know my grandmother was diabetic until I was diagnosed. So I can’t say I knew how to feel. I had to learn that I really needed to manage my diabetes and at that time in my life I wasn’t quite ready.

Do you still hold some of those same feelings now?

I still get angry sometimes but I think I’m a lot smarter now that I used to be. Mostly because of the complications I have to deal with.

So, you are known as the “Diabetic Comedian”, how do you incorporate diabetes into your standup?

I only use that title on Twitter. Cause if I walked into a club with that tag I would never get any work! I write jokes about my own personal experiences with my condition. Many comedians make jokes about certain diseases without really knowing anything about it. By telling more personal stories, it kinda’ helps people who know nothing about diabetes gain more knowledge even when its based in humor.

Do you feel that using diabetes humor helps you deal with the stress of living with diabetes?

For me yes. I can’t say that every diabetic should use humor but it works for me and some others. I think every diabetic should find something to help them cope whether its humor, sports whatever.

Have you ever had to deal with a low blood sugar while on stage? If so, how did you deal with it?

It has happened before and it opened my eyes to how ignorant people are to the condition. Sometimes I have to go to the bar and ask for a glass of juice and have to explain why its an emergency. Then I get that blank stare from the bartender. People just have no clue!

Other than being a funny dude and managing diabetes, what other hobbies do you have?

I’m a bit of a comic book geek. I’ve been collecting since the late 80s. Around the time of the first Batman movie. I collect books for whatever reason along with records and I play drums.

In what ways do you use your comedy to help spread diabetes awareness / advocacy?

I’m working on a project called Sugar Free Comedy. Basically its been comedy shows to raise funds for diabetes research. I recently performed in Salt Lake City for the Diabetes Mixer and I had a blast!! I love my new friends in Utah!

Where can people hear / see come of your standup / comedy online?

You can search my name on Youtube and Rooftopcomedy.com

Where can people find you?

facebook.com/comedianchelcie, twitter.com/chelcierice

Any last thoughts or comments you would like to share with the diabetes community?

There’s a lot of negativity flying around the DOC and I think we need to kinda’ check our attitudes. We need to keep educating those that don’t get it and not let our disagreements keep us from helping each other. I’m not a “warm fuzzys” kind of guy so lets just keep the support going and help each other.

Leave any questions that you may have for Chelcie in the comments or send him a quick shout on Twitter or Facebook.

Take care.

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