Tag: advocacy

Just write

It’s a long story (that’s what happens when you haven’t posted in eleven and a half months), but I was on a 36 hour round trip adventure with my mom to Southern California and back and we needed something to listen to on the drive when we got sick of Christmas carols. I suppose I should mention that this was about a month ago. I typically listen to podcasts on long drives, but most of them are serialized (unintentional Serial pun) so it wouldn’t really be fair to my mom to make her listen.

Instead, I downloaded the audio version of an autobiography that actually happened to be almost exactly the length of our four hour drive. At one point, the author was talking about advice she received about writing when she was feeling stuck. One of the most important tips was just to put in time every day and write. No editing, no researching, no social media, just time sitting in front of the computer writing.

I turned to my mom as the book was wrapping up and said, “she makes me want to start writing again.”

I stopped because I thought didn’t have time, but there are always a few minutes a day to write a few thoughts down. I stopped because I thought didn’t have anything to say, but anyone who knows me in person knows that can’t be true. I stopped writing because there are a lot of aspects of my life that aren’t appropriate to share about online, but there must still be moments of wonderful that are worth sharing.

More than anything else, I’ve realized how dangerous it is to think that my voice doesn’t matter.

So, I’m going to start writing again.

Shame

Let’s ignore for a moment that I haven’t posted in two months. Working in diabetes all day takes a bit of the motivation away from writing about it at night. Unfortunately something happened last night to bring a little of the motivation back to the surface.

radio advocacyI was invited to tell my story on a local diabetes radio show. Typically when I share my story I share about the importance of diabetes education – education for the general public about the signs and symptoms of diabetes and continued education for people after they are diagnosed. Those two things would have made such a difference in my diagnosis story and life.

I was on the show with two doctors who primarily deal with diabetes complications. We talked about the importance of being prepared for appointments and making sure your doctor always does a full exam to spot any complications while they are still easily treated.

At the end of the show the host always asks his guests how we get more people with diabetes to go to the doctor. Recent news brought one thing to mind and my response was that we needed to take the shame out of diabetes. It needs to stop being the pun of someone’s joke. Why would a person go to the doctor if they 1) think diabetes is not that serious and 2) think that it is their fault?

The doctors also had an opportunity to answer the same question. One of them suggested that instead of waiting for people to go to the doctor, we should instead go out into the community where large groups of people with diabetes might be and meet them there. I’ve heard that plan suggested before and even saw a presentation about its success at a conference in Florida.

It would have been a positive way to end the interview except the other medical professional then says, “You want to go to where people with diabetes are? Try fast food places.”

It boggles my mind how much work is left to be done.

The Best ‘Betes Blogs of 2014

In the spirit of the wrap up posts making their way around the blogging community, here is the list of the Best of the ‘Betes Blogs for 2014.

Each month, posts are nominated by anyone in the diabetes online community through email, twitter direct messages, and/or an online form. The host of the list for that month selects his or her favorite posts from among the nominated posts. Then at the end of the year, all the monthly favorites are compiled into one list for members of the diabetes online community to vote for their favorites. The voting period ended at 11:59 on December 31, 2014.

Thank you to everyone who contributed to the process. This isn’t a list of MY favorite posts (in fact, most of my favorites did not receive the most amount of votes) but is hopefully a reflection of all the different aspects of the community.

Note: One of the categories is not listed below; there were some voting irregularities in that category so the best solution was to not include anything at all.

With no further explanation, I present some of the favorite posts from 2014.

 

Best Use of Humor

In February, there was Moira with “Those questions we all get: Helpful answers for the most common ones. A guide.”

Best Vlog

Melissa entertained us (and raised money) with her parody videos, using some of our favorite songs with a diabetes twist (during September alone she posted I’m still here, Normals, 365, So High Today, For the First Time in Forever, and Treat More Moderately)

Best Recipe

April brought Lindsay’s “Bacon Wrapped Ghee and Garlic Chicken”

Best Advocacy

In the midst of the viral videos in August, Moira (posting on A Sweet Life) wondered if the diabetes community needed something similar and asked “Does Diabetes Need An Ice Bucket Challenge?”

Best Reference to a D-Celebrity

As a member of the Nightscout/CGM in the Cloud community I certainly appreciate the post from July on Kerri’s blog that profiled an increasingly popular celebrity – “We Are Not Waiting: CGM in the Cloud (Part 1).”
best of 2014

Best Story of a D Meet-up

I didn’t end up in any of the pictures, but I was nearby in July when Briley was “Kicking Off 25”.

Best non-D Related Post

The two best non-D related posts both reminded us that there are other aspects of our health apart from diabetes that can also take our focus. First, Tina reminded us that sometime when facing other health concerns it is possible to have “Diabetes Anxieties Where There Should Be None”. Then in August, we celebrated with Marie as SHE celebrated “16 Years Cancer Free”.

Best Post by a Type 1

Part of me absolutely loves that there were FOUR different posts that received the same amount of votes in this category. I enjoy the different perspectives and purposes behind each of the posts. In March, George perfectly describes the battle and the comparable dangers of highs and lows with “The Dragon and the Cliff”. June and October brought diaversary themed posts from Alecia and Kelly. Alecia’s post came first in June sharing how she felt after “35?” years and then in October, Kelly shared how she felt on her “Diaversary: THIRTY-SEVEN Years Of Living With Diabetes ~”. Finally, in August, Renza recounts her transition to being described as “Brittle” to finding health care professionals who helped her find other ways to manage her diabetes.

Best Post by a LADA/Type 1.5/Not otherwise specified

I had the chance to meet and work with Barbara in the DHF booth at AADE in August of 2013 and then sadly in January of 2014, Manny described the lessons he learned in her unexpected loss – “If You Love Someone Call Them Today”.

Best Post by a Type 2

Last week, there was a post in a Facebook group I am a part of where a young girl (with T1D) posted about chocolate bars and getting diabetes. She thought it was funny and didn’t understand why other people in the group (also with various types of diabetes) didn’t agree with her joke. In June, Kate offered an important message about those types of jokes and “Why it isn’t funny”.

Best Post by a Type Awesome

When people on insulin pumps have a high blood sugar, why is the set change the last thing we (or maybe just me) finally attempt to bring the number down? In June, Meri explained “The five stages to an unplanned set change”.

Best Story of a D-mistake

It’s not exactly a diabetes mistake. It sounds like the decisions that I am forced to make every day and every night and the consequences of those decisions. Renza told the story of the way that she was able to explain those decisions and their repercussions to a group of health care practitioners in honor of World Diabetes Day in November and, in turn answering the question in the title of her post – “Do We Need World Diabetes Day”.

Best Motivational Post

Everyone can use a little extra motivation, so it is fitting that there was (another) tie in this category. Alecia reminded us in March that sometimes we need to put ourselves out there and reach out to other people, especially when “Captain, Tenille and Dora the Explorer Take the Subway”. Then during Diabetes Blog Week, Ilana shared the mantras that have helped guide her life in the post, “D-Blog Week Day 4: Mantras and More (Telling Stories)”. Finally, in November, Renza shared her perspective on living with diabetes and the outlook she chooses to focus on with “My glass is half…”.

Best Diabetes Art

I don’t know if I should apologize for laughing at Meri’s post from April, but if you’ve ever taken a spill while trying to be extra quiet and careful after bedtime (I had an encounter with a Lego set just last night!), you will appreciate “The Fall: In Drawings”.

Best Comment

I think I am supposed to call it a “Suesflash” that Kelly’s comment in June on a post on Test, Guess, and Go was voted the favorite comment of the year!



Whew! What a great summary of posts from 2014. Thank you again to everyone involved.

I really, really, really need help to keep this going in 2015. If you would like to host one of the monthly lists this year, please email bestbetesblogs@gmail.com. I will send you the directions all you have to do is help share on social media that you are hosting that month. I organize the list of nominations and then you get to pick your favorites!

Happy 2015!

Best of the ‘Betes Blogs: Best of 2014

#bestbetesblogsIt’s that time of year again – we’re wrapping up the Best of the ‘Betes Blogs of 2014. I’ve visited the posts for all of this year’s hosts and compiled their lists of the best posts for this year. It was really interesting to look back at all the posts that have been written over this past year and see all the changes we have experienced.

[If I told you it actually took me HOURS to look up all the posts and write the code for all the links in all the categories, would that make you more likely to vote? Please vote!]

From now until 12:59:59 PM PST on December 31, 2014 visit the links below (all links open in a new window so you won’t lose your place!) to select your favorite posts from 2014. Then after the first of the year, we can see the Best of the ‘Betes Blogs of 2014 as we begin sharing about our meet-ups, d-mistakes, vlogs, advocacy, humor, and all the other best moments of the diabetes community in 2015.


What was the Best Use of Humor in 2014?

Total Voters: 81

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What was the Best Vlog of 2014?

Total Voters: 43

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What was the Best Recipe of 2014?

Total Voters: 22

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What was the Best Use of Photography in 2014?

Total Voters: 249

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What was the Best Advocacy of 2014?

Total Voters: 58

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What was the Best Reference to a D-Celebrity in 2014?

Total Voters: 32

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What was the Best Story of a D Meet-Up in 2014?

Total Voters: 24

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What was the Best Non-D Related Post of 2014?

Total Voters: 18

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What was the Best Post by a Type 1 of 2014?

Total Voters: 38

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What was the Best Post by a LADA/ Type 1.5/ Not otherwise specified of 2014?

Total Voters: 20

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What was the Best Post by a Type 2 of 2014?

Total Voters: 16

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What was the Best Post by a Type Awesome of 2014?

Total Voters: 50

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What was the Best Story of a D-mistake of 2014?

Total Voters: 31

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What was the Best Motivational Post of 2014?

Total Voters: 35

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What was the Best Diabetes Art of 2014?

Total Voters: 50

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What were the Best Comments of 2014?

Total Voters: 25

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Happy Voting!

Proud

This weekend was a big amazing time for diabetes advocacy and I am proud to call these people my friends.

with Kim.

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First, Kim gave an amazing speech on the main stage at the Medicine X conference. MedX is an “initiative explores how emerging technologies will advance the practice of medicine, improve health, and empower patients to be active participants in their own care” (source). From my attendance last year, I know that the room was filled with health care practitioners, fellow patients, entrepreneurs, and all other involved in the healthcare experience. Kim’s message about the power of “me too” is something that touches everyone and it evident as I watched the tweets fly by.

with victoria.

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Meanwhile, just about a four hour drive northeast of the Stanford stage, Victoria and Jeff were busy riding 72 miles around Lake Tahoe in one of the JDRF Ride to Cure Diabetes. 72 miles! And between the two of them they raised over $11,000 to fund research towards better treatments and a cure for type 1 diabetes.

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I am very proud to count these wonderful diabetes advocates among my friends. Even if I don’t have matching dress pictures with all of them.

Welcome back – August Best of the ‘Betes Blogs

It’s been quite a while since I hosted the Best of the ‘Betes Blogs list here. This month I just forgot to get a host until it was too late. Side note: Email me if you want to host in the next few months!

There were definitely some interesting reads this month and some non-traditional nominations. I really enjoyed checking out everything on the list.

Best Use of Humor: The Grumpy Pumper takes a … unique… approach to celebrating his diaversary.

Best Vlog: Spotted on Chris’ blog, this episode of My Drunk Kitchen (retitled My Diabetes Kitchen) provides basic diabetes education and advocacy in a way I’ve never heard before.

Best Recipe: I had to read this one a few times to try to find the recipe from Katy. I think it got nominated for sharing the joy of a day in the life of spending time with family who don’t understand celiac and being gluten free. It’s really a wonder I ever get invited out to eat – like the time the whole family picked a local Italian place.

Best Advocacy: In this post, Moira takes a look at the relationship of the Ice Bucket Challenge and the diabetes community.

Best Reference to a D-Celebrity: Thank you Auntly H for introducing us to Rebecca Young, an Olympic hopeful speed skater with type 1 diabetes. She needs the help of the diabetes community to continue her dream, so please read Auntly’s post.

Best Story of a D Meet-up: A story of the time when Alexis met someone who had just found out he was pre-diabetic and the changes he was committed to make.

Best non-D Related Post: Marie’s post about being SIXTEEN YEARS cancer free was nominated by several different people. As she shares, “Aging is the most amazing thing that can happen. It is proof you lived, even when death was an option. Aging is a gift to be celebrated.”

Best Post by a Type 1: It’s a post by Renza about brittle diabetes, but it is also a post about never giving up and pursing your questions with your doctors until you are satisfied with the answers.

Best Post by a Type Awesome: A post by a Type Awesome as she contemplates her changing role as a Type Awesome.

Best story of a D-mistake: Allison’s post about her possessed Dexcom receiver had me cracking up. I was trying to figure out what the problem was right up until the very end. The real problem sounds exactly like something that would happen to me too!

Best Diabetes Art: Sneaking in right before the end of the month, Kim offers a great depiction on how an awareness month can really feel. One thing I became more aware of at Medicine X last year (don’t forget to sign up to view Kim’s speech this year), was that we are not the only patient community to feel this way.

Best Comments: Another nomination found by way of someone else’s blog (I think it’s the first time it’s happened and it happened twice this month). Thanks to Kerri I found out about Darth Skeptic’s unusual method of diabetes education currently taking place on Twitter. An awesome approach, but I don’t think I have the mental strength to explore the ignorance on the #diabetes hashtag.

There were no posts nominated this month for: LADA/ Type 1.5/ Not otherwise specified, Type 2, or Motivational.

If you’d like to help spread the word about the Best of the ‘Betes Blogs, you can grab the button below or the one listed on the right hand side of this post.

#bestbetesblogs

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Thank you to all those who nominated posts this month and congratulations to those who were nominated.
Alecia
Briley
Kerri
Sara
Scott E
Stephen S
Tina
Tom

Thank you for your reply

Using the form available on the JDRF Advocacy page, I contacted my senator earlier this month. Let’s keep the #MedicareCoverCGM process moving forward!

#MedicareCoverCGM

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