The Importance of the Diabetes Community

For those of you who are new to Arden's Day...

I do a little freelance writing some times. Once a year I write a series for Insulet, the company that makes the Omnipod insulin pump. It is no secret that when I'm paid to contribute articles the company paying me is hoping that my blog readers will checkout their blog, site, products etc. Hopefully they also like my writing, but I digress. 

When I negotiate my writing contracts I always push to be able to repost what I've written here on Arden's Day. There are two reasons for that. 1. I don't want you to feel pressure to visit another site and 2. I don't want to hand in less than my best work in an effort to keep the 'good stuff' for Arden's Day, and for you. This way it's all the 'good stuff' and you can read it where you'd like. Alllllllll that said, this is the first in my five part series on the Diabetes Community. It ran on Insulet's Suite D blog one month ago (I have to wait a month to post here). Part 2 is up now on their blog as well, you can read it on Suite D or wait until next month and I'll repost it on Arden's Day. One last word on this. While I am paid to write for Insulet, it's not nearly as much money as you may be imagining and besides, there is no amount of money that could make me pass information or sentiments to you that are anything less than my 100% real feelings and experiences. This blog, our community and the responsibility that I feel toward you all means too much to me for anything like that to every happen. I just love the Omnipod and am happy to tell people about it. And you know what? Good on Insulet for letting me repost here, they couldn't have been thrilled when I made that request. 

Part 1: How it Saved Our Family

When my daughter Arden was diagnosed with type 1 diabetes in 2006, our family was violently thrown into a world that we didn’t understand. The days, weeks and months that followed were full of endless sadness, fear and moments that hindsight would later tell us we could have handled much better.

I’m choosing to share my largest diabetes misstep from that time in our lives, because it led me to what may be the most valuable discovery of my adult life. This is part one of my five-part series about community and how it will save, support, teach, improve and transform your life with diabetes.

I should have sought out other people who understood our struggles, I should have found community. Too many of the decisions I was making were informed by speculation that was fed by an often self-imposed and largely unnecessary fear.

What I needed was support and wisdom, but instead I hid from the world and, in doing so, created a vacuum that was not conducive to living well. Had I found other people living with diabetes sooner, they could have shown me what I now know, but took much too long to discover.

Arden and Kelly at our first JDRF walk, two months after diagnosis.

My first experience meeting other people from the diabetes community was at our local JDRF walk. The walk we attend goes through a park full of winding paths, steep hills and majestic scenery – countless thousands of people all moving forward in love and support of one another.

At some point during the morning Arden needed insulin. We had just stepped off the path so others could pass when I realized that pausing our life to give Arden insulin didn’t seem in any way noteworthy to the people passing by. And then it hit me.

Everyone here has or loves someone who has diabetes. They don’t look scared and their faces don’t reflect the sadness that I feel. We were suddenly and beautifully surrounded by people whose lives weren’t being defined by diabetes. It was right then that I began to believe that diabetes wasn’t always going to permeate every second of our lives.

To this day I believe that the most beneficial aspect of what the JDRF provides is the opportunity to find sameness. If those walks didn’t produce a dime for research, I would still be there each year just to spend a little time around people who understand. Each year when I walk, my greatest hope is that someone who is feeling as I once did will see our faces and think, “I’m not alone. Those people look happy – we can be happy too.”

Community can take many forms and often the support you need can’t wait for a moment that can be found in real life – you may need the community to come to you. Luckily, the diabetes community is one of the most well-represented patient communities online. There are so many different ways to find kind, helpful and present people who would love nothing more than to help you believe that living well with diabetes is a tangible goal. These people have walked the path that you are on – they know the shortcuts. They write blogs, take the time to lend an ear on forums and give their best advice on Facebook pages. You haven’t been hugged until you’ve been hugged virtually by a stranger whose only desire is for you to not feel alone. Now that’s support!

Read 'The Importance of the Diabetes Community' Series
Part 1: Currently Reading
Part 2: Finding Support
Part 3: Coming in April
Part 4: Coming in May
Part 5: Coming in June
 

Feel what it’s like to wear the OmniPod – with no obligations. Click here to order a free Demo today.

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The Marathon Runner Who Jumps Over All Hurdles

We all get knocked down from time to time -- that's just life. Robin Arzon has perhaps experienced this more times than could be considered her fair share. The story of her life reads like the written account of a heavyweight boxing match that won't end -- because nothing keeps Robin down for very long.

The daughter of immigrant parents, Robin originally planned to follow in her father's footsteps and become an attorney. She chose to get her undergraduate degree at NYU's Gallatin School of Individualized Study. Robin didn't take the course load that one may expect of a prelaw student, opting instead to take her father's advice, "You will learn how to be a lawyer in law school, take the classes you want to take." 

About a year before she would graduate from Gallatin, Robin met a couple of friends at Bar Veloce in New York's East Village. A casual, fun night out with friends soon turned into a life-altering experience that would propel Robin to a new direction, years later. That night a ranting man armed with three hand guns, a sword, kerosene, a lighter and the desire to "choose when he dies" was out on the street exacting his plan to die in a fire while killing as many people as he could. The gunman approached and shot a man on the street. The wounded man took refuge in the closest place he could find, Bar Veloce, and the gunman followed him into the business. Upon entering the bar the gunman forced all of the patrons, Robin included, into the back where he huddled them together and soaked them in kerosene. 

Early on in the confrontation the man spoke of wanting to talk to the police, and Robin served as his line to the police while being held as a human shield. Afraid but not wanting to give up, Robin spent that time trying to talk to the man in the hopes of ending the nightmare. When the police arrived Robin was being held by the madman by her hair, still soaked in kerosene, with a gun and a lighter being held to her head. Two patrons tried to jump the man as he held Robin; one was shot but the commotion of the struggle was enough to allow the police to storm the room and subdue that man.

This harrowing experience took a toll on Robin, but she got back up, graduated, went to law school at Villanova and practiced for seven years at a prestigious firm before making her next decision that flew in the face of conventional wisdom.

It was during law school that Robin found, very much by mistake, her passion for running and fell in love with it. She describes that in the years after much of her time in the law office was spent "counting down the minutes" until she could go for a run. This is all from someone who was made fun of on the playground for how she ran and who was forging notes as a teenager to get out of gym class. Robin then made a choice that not many could, she quit her safe life, one that she worked very hard for, to follow what her heart was saying.

Initially Robin worked at being a freelance sports journalist and had "no idea what I was doing." Robin started a blog, interviewed Olympic athletes with her cracked iPhone and surrounded herself with like-minded people -- kindred spirits who love to sweat. 

Robin realized that if you put the work in, you can become whatever you want to be. Robin created a new life as an "Ambassador of Sweat" -- becoming a running coach, cycling instructor and ultramarathoner. 

A believer in her mother's words that she is from "resilient stock," Robin says, "Resilience and willpower can seem finite but they can be recharged." Those theories would be tested last year when Robin was diagnosed with Type 1 diabetes at the age of 32. 

Robin thought she was jet lagged after returning from India with her mother and sister. Her mother, who is a physician, was worried that her symptoms could mean something more and she sent Robin to have blood work. Two days later she had an endocrinologist and was taking insulin to manage her blood glucose. Robin's first thought wasn't why me or what next. Robin isn't the type of person to worry about obstacles, all she wanted to know from her doctor is what tools she would need to be healthy with Type 1 diabetes while being able to continue her life as an athlete. Her doctor put her on an OmniPod insulin pump just days after her diagnosis because of its tubeless design and a Dexcom continuous glucose monitor so she could watch her glucose values in real time.

My story on Robin also ran on Huffington Post Healthy Living and has been picked up by Yahoo and AOL. Thank you for all of the great support!

Robin made good use of both tools recently when she finished the New York City Marathon, her fourth marathon with Type 1 diabetes. The NYC Marathon was the first marathon she ever ran, four years ago, and now she says Type 1 diabetes has made her stronger because it has made her more determined to accomplish her goals. 

"I really believe we need to trust our struggles," says Robin. "It can be hard to find reason and rationality in a disease like diabetes when you think your body should be doing what it's meant to do but it doesn't. Trust your struggle. There's always light through the cracks. Find inspiration online, from friends and family, from the community, and it will reinforce your power."

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A1c: Working 9 to 5

I remember the first time that I was able to make Arden's A1c decrease on purpose.

I don't remember what her level was or where it moved to but I remember making an adjustment to her regiment that worked as I anticipated and the moment that her Nurse Practitioner walked up to me to share the good news.

The decrease was minimal and Arden's A1c was still much higher (in the 9s) than where we hoped for it to be, but still I broke down and cried in the waiting area when the NP told me the news. I must have been quite the site because after a moment I felt the NP put her arms around me and she hugged me tightly without saying a word.

That moment in our lives occurred many years ago. On that day I believed that I was crying because Arden's A1c was lower, but today I think that the relief I was feeling stemmed from success – effort was finally turning into results. Moving that number however how slightly, was the result of hard work, hours of contemplation and months of trial and error. The tears that I shed had accumulated from all of the moments that I wanted to cry but didn't and it felt right to release them in celebration, I could sense that the tide was turning. 

In the years that followed more adjustments were made. We added the OmniPod insulin pump, a decision that led to a large decrease in A1c. We also changed how we thought about many foods but the final piece of the puzzle was adding a Dexcom CGM which gave me the confidence to use insulin more boldly. We now had the tools that I felt I needed and the path to travel was clearly in front. We just needed to learn how to walk. Each step was a learning process that led to incremental improvements for Arden but we were finally moving forward with purpose and that seemed like a huge leap.

I love to tell these stories because even though it doesn't feel like it today, you won't be reading this blog for much longer, at least not for the same reasons as when you began. Arden's Day readers are mostly made up of the parents of newly or newer diagnosed children and folks who are still finding their way with type 1 diabetes. One day, much sooner than you think, you will have the accumulated knowledge, courage, and hope that you will need to make Arden's stories your own. Then you can get back to using the Internet for good stuff like reposting photoshopped pictures of Kim Kardashian's shiny ass, taunting your friends on Facebook when their sports teams lose and 'liking' pictures on Instagram. 

Here in present time... it was Endo day. I tried to give Arden my obligatory speech about A1c levels and ready her for an unexpected increase that will likely happen at some point. I want to prepare her because we have been on some kind of a crazy run over the past two years and my hope is to limit her disappointment, should things go the other way. Arden stopped me before I could finish and said, "I know, I know, you tell me every time - I won't be disappointed if it goes up". Seems that my sly parenting skills aren't so sly anymore...

When we arrived the nurse recorded Arden's weight, height and BP and then we made our way to the little room where the blood stuff happens. The A1c machine began it's test as we were being ushered into an exam room. Not long after we sat down, the NP brought Arden's A1c results to us. When she spoke the number out loud there were no tears of joy, no relief, no sense that we had been working hard for what was achieved and deserved this. Arden's A1c had reached a new level, one that I certainly didn't expect we would arrive at for maybe another year. Hearing the number only caused me to feel calm. "I knew this was going to happen if we just kept at it", I thought to myself.

I put my hand on Arden's back and congratulated her and then texted my wife Kelly with only this image, her response was...

"Shut up!!"

This post is for everyone who is at the point where 5.9 feels unobtainable. I am here to promise you that it is within your reach. Each of you can do this with time and patience. It hasn't been easy. We've added technology, switched insulin, adjusted diets, sacrificed sleep and persevered countless setbacks, some of which I thought could break my spirit. Yet here we are at 5.9.

I don't know how long we can hang on to this number. Maybe this is our new normal, maybe it's a fleeting moment and puberty will come and knock us into oblivion, who knows. None of that matters because I know and believe that we can find our way back here again; this time with purpose. 

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2014 Year in Review

It's December 31st and I've been spending a lot of time recently thinking about how to make Arden's Day better for you. As we head into the eighth year of my little blog's life I'm looking at ways to make the blog more informative, social, easy to consume and worth coming back to. In the process I've been reading a lot of old post from 2014 and found a few that are worth revisiting before the ball drops. I hope you read to the end of this long post, I'd like to share something very personal to me before the calendar flips. 

From January 2014

It baffles me, but one of the most popular things on the blog this year was a photo of me looking tired, How to Spot a D-Parent. It was even reposted on Diabetes Daily and become one of their most popular post of the year. Of all the things I wrote, shared and talked about this year, you liked seeing me looking ragged the best. Tells me we are all pretty damn tired.

From February 2014

Dexcom was approved for pediatric use, one of my non D storIes blew up on Huffington Post and Miss Manners was all the buzz but all you guys wanted to see was pictures of Kris Freeman's abs. Parents still read this post every day when they wonder if their child is too lean for pumps and a CGM. Kris's abs turned out to be quite the public service.

From March 2014

My blog titled, Pitstop Fail won Best of Betes Blogs for March - a huge thank you to the person who nominated it and voted!

From April 2014

A Forgotten Wallet Buys a BG of 25 and I got yelled at a little bit in the comments. BTW, Kris Freeman could have easily been mentioned here too, you guys sure love abs.

From May 2014

I changed my expectations for what 'in range' means and lowered Arden's a1c, Living Between the (Diabetes) Lines. 

From June 2014

June brought the lowest A1c Arden has gotten to date, A1c Countdown: It's Endo Time.

From July 2014

This was the month of #ShowMeYourPump but Arden's Day readers were more interested (By just a few hits) in Arden's Sudden Needle Anxiety. 

From August 2014

In August I tried with all my blogging might to get you to believe that Diabetes and Fear don't have to go together, Guts over Fear was written, the hashtag #DiabetesandFear was tweeted and my quest was underway. 

From September 2014

I traveled to the Dominican Republic to deliver a speech to a group of D parents during the summer but wasn't able to share the video of my talk until September. My time in the D.R. led to a very popular post, my first invitation to give a keynote at a JDRF event (Info coming soon) and a whole lot of new understanding about the rest of the world. 

From October 2014

Hello Dexcom SHARE you are the remote monitoring I've been waiting for.

From November 2014 

Arden changed her first OmniPod without any help from me while she was at a sleepover, I'll Take Insulin Pump Change for the Win Alex.

From December 2014

I shared our experience with getting an insulin pump in the hopes that it would give you the freedom to speak your mind because, Don't Let Doctors Push a Pump on You, that's why. 

I can't thank you enough for reading about Arden's day. I hope you have time to check out one more post from 2014, it's one I wrote today about what diabetes blogging means to me, you can find it here. Have a happy, healthy 2015... you are all in my thoughts. Best, Scott

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Best of Betes Blogs From 2014

Best of Betes is from Sara Nicastro and it is wonderful!

from Best of Betes Blog: Best 2014

"It’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."

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If you want to read some of the best diabetes blog posts from 2014, this is the link for you. While you're there you can even vote for one in each category and help to decide the winners for 2014. No prizes go with the distinction... just a bit of bragging rights.

Psst... I won way back in March for a post by a Type Awesome (That's a D parent) for my blog titled 'Pitstop Fail' -- just saying ;)

But seriously, there is a ton of great writing and advocacy at this link, you'll be happy that you took the time to check them out here

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