Six Nights of Sleep

The insanity of youth sports may have just saved my life...

I've lost track of how long it's been since I've had a revelation about type 1 diabetes parenting that I felt should be shared. It has bothered me that I haven't written as much over the past year on this blog, professionally and for fun as I expected that I would, but I've rationalized the drop off by telling myself that I didn't have much to say.

Today I have something to say

Last week very early on Thursday morning I drug myself out of bed after only sleeping for a few hours because of a stubborn blood sugar and turned on the shower. It was just before five in the morning and I was about to drive to the airport with my son Cole. Cole is fifteen and his baseball team was about to compete in a week long tournament in Georgia. Cole and Arden have both played in tournaments in the past that have required a night or two in a hotel but this was my first experience spending a full week away from home where my wife and I had to split up to care for our kids.

I went to Georgia, Kelly stayed in New Jersey

Initially the trip caused us some angst. The cost of spending a week in Georgia is oppressive and felt ridiculous when considering that Cole is only 15. There was the specter of Arden's Omnipods and Dexcom CGMs needing to be switched during my absence, not to mention that Kelly had to use precious vacation time so she could stay with Arden. But I digress, let's get back to me in the shower.

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Cole making a crazy catch in centerfield - Georgia

I was standing in that shower last Thursday morning completely sapped of physical and mental resilience. Next month Arden will have type 1 diabetes for nine years and I am so far past the day where I ignorantly believed that I was the one human being on the planet that didn't need a good night's sleep, that I now exist day-to-day in a zombie like manner dragging myself to the next handful of hours of sleep. Never-the-less I dutifully washed myself and woke my son, we drove to the airport and made our way to Atlanta where I met up with my son's team, each parent that accompanied had their own ideas about how to pass the time in Georgia - I was no different.

We all attended the games but there was so much downtime. One group of lone dads took the opportunity to relive their youth; some families traveled together and took day trips in between games... I slept because I had just enough focus left to recognize that if I didn't I wasn't going to make it much longer. The first two nights I slept for close to twelve hours respectively, on the third night I crammed in ten hours. On Sunday afternoon, my brain restarted. Some fathers were sitting around talking about the election and I was following what they were saying. The conversation moved back and forth, the topics were deep and flowing and I was keeping up and having thoughts of my own. I had not felt like this in a very long time. I then remembered a few months prior having a (semi) conscience thought that I was unfocused most of the day and that I was having trouble thinking. One night, not too long ago, I recall sitting up with a low blood sugar and feeling like my heart was going to burst. Yet after only three days of sleep here I was able to keep up in a fast-paced and thoughtful conversation. 

I took some ribbing over the week for my early to bed late to rise game plan but I was undeterred and I tried to explain my exhaustion to a few of the other dads, they did not come close to being able understand, though I could tell that they thought they did. Yesterday Cole and I flew home after seven days of baseball in the unrelenting Georgia heat. I spent six glorious nights sleeping on a sketchy Marriott mattress that in any other situation, I'd have thrown out a window. Today I am a new person but that's not the end of my story.

While I was sleeping Kelly and Arden were at home living 

Arden swapped two Omnipods by herself while I was gone and Kelly applied her first Dexcom sensor! I was super proud of both of them but not surprised in the least at the deftness at which they handled the tasks. It turns out that by removing me from day-to-day life, we removed a few misconceptions that have been solidified by time. You see up until five seconds after Kelly inserted Arden's Dexcom sensor, Arden was sure that only I could do such a thing. Now she knows that Kelly can as well and I'm betting that Arden is now on her way to believing that she can too. The girls also had fantastic control of Arden's BGs during a week were Arden played or practiced softball almost everyday and we all know that in itself, is no small feat. 

The only thing left for me to do is to find a balance that keeps me from sliding back into the brain fog that allowed me to fall so far from feeling human without allowing Arden's care to suffer. It's too nice feeling like this again and I can't and won't ever go back. You have no idea how relieving it is to write this today... I thought I had lost my ability to write. I would have been heartbroken by that feeling, you know, if my brain wasn't numb. Instead my life was drifting away like a slow iceberg trudging along without me noticing the direction that it was taking. 

If you are a long time diabetes parent please talk to your loved ones and find a way to get yourself significant quantities of rest and please don't stop sleeping until you feel like yourself again. You aren't the only person on the planet that doesn't need sleep and the fog that you are in right now is very likely clouding your reactions, thoughts and ability to live well.

If you are a new diabetes parent, heed this warning. You will not be the exception to the human need for sleep. I thought I was for years and had it not been for this baseball tournament, I may have died prematurely still believing that I was. No matter how badly I want Arden's blood glucose to stay in range, not sleeping to accomplish those numbers can't be the answer. A balance must exist and I'm going to find it.

We all need to sleep

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Omnipod Welcomes Asante Snap Patients

The recent and unexpected closing of insulin pump manufacturer Asante has left users of their Snap insulin pump in search of a new way to deliver insulin.

In response to the news the makers of Omnipod have announced a welcome program for Snap users that includes a no-cost PDM and ten free pods.

If you are a Snap user who thinks that Omnipod may be the right choice there is no better time to make the move. If you meet the simple requirements listed in the image below, call 888-6-GETPOD to get started.

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The Importance of the Diabetes Community

This is the second in a series of five pieces that I wrote for Omnipod's Suite D blog. Part three is live on Suite D now and will arrive here next month.

It's a paid freelance gig, you can read my disclaimer about that on part one of the series (link below), 

Part 2: Finding Support

My bedroom was pitch black and the house completely silent. It was well after three in the morning and I hadn’t been to sleep. My belief that my daughter Arden’s blood sugar would rise to a safe level was tenuous that evening so I was watching over her even more than usual.

When I fall asleep the likelihood of me waking up when I need to is slim. So on nights like this one I tend to just stay up. This night happened before we became continuous glucose monitor users and I would periodically walk from my room to hers to check her blood sugar. Each time I climbed back into bed, I became a little less certain that I could stay awake. Because my wife was sleeping I was trying to stay still, my eyes were sore from a long day that was getting longer. I had to stop watching television on my laptop, because it felt like there was sand in my eyes. I was exhausted, bleary-eyed and pretty sure that I was about to nod off – so I opened my Twitter app and, perhaps out of desperation to stay awake or maybe in an effort to not fall apart, I told who ever may be out there what was happening.

A few silent minutes later, I received a response from a woman whom I’d never met. She told me that she was also sitting up watching a blood sugar that she didn’t quite trust. That was it really. We didn’t talk much or offer one another solace. It was sort of a, “I’m here doing this thing and it’s getting the best of me.” And a reply that basically said, “Me too.”

I closed my laptop, the abyss of the night enveloped me and I began to sob tears of relief.

I was buoyed by the notion that there was another person in the world that was doing what I was and suddenly everything felt better. I learned that night that it isn’t the diabetes that made me feel alone and it wasn’t the darkness that caused me to want to reach out; I was being oppressed by the feeling that no one understood our life.

And just like that, with a tweet, I found sameness with someone that I couldn’t see, hear or touch. My diabetes community expanded. No longer would I have to wait for a JDRF walk to talk to a person who understood my life. Supportive glances, understanding words and the satiation that sameness brought, they were all I needed to feel recharged. Support came that night, but not in the form of mentorship or advice. This wasn’t a plan for counting carbs or talks of how to best prep a pump site. It was simple, beautiful and kind. A brief encounter with a person who had walked in my shoes and reassured me that I was not alone.

I’ve learned diabetes jargon, gathered information about insulin pumps, medications and ways of handling type 1 diabetes from the diabetes community. They’ve taught me with their openness to be comfortable with others being my rock when I can’t do it for myself. With the help of these wonderful new friends I began to see a light at the end of a tunnel, I was beginning to believe that it was possible for us to find our way back to feeling normal.

Read 'The Importance of the Diabetes Community Series
Part 1: How it Saved Our Family
Part 2: Currently Reading
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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Helping Children with Diabetes Gain Independence

This is the finale of the series. Links to previous posts are below, if you'd like to read it in order.

I was asked recently on my blog if I had any tips for a family that was considering Arden’s school day diabetes management plan. Anything that I hadn’t mentioned – perhaps a tip that would make the transition smoother. I responded in part by saying, “I didn’t know what I was doing when I started either.” I think that’s the most powerful message of support I could offer anyone. None of us know what to expect when we forge our own way with type 1 diabetes. All we have is the knowledge that we’ve been able to accumulate, but I think that’s a lot.

Consider how little you knew on the day that your child was diagnosed and remember how your doctors only began to scratch the surface when they explained diabetes care. Now, you probably have more diabetes knowledge than three doctors combined. I know that I am the foremost expert on my daughter’s physiology. I can, with great accuracy, predict how her body will react to insulin, exercise, stress and all of the factors that we pay attention to. I didn’t learn these things in school or at a doctor’s office, I learned them by experiencing diabetes – and that’s how our kids are going to learn.*

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I want to caution you to not get too comfortable and to always keep a watchful eye as our children take over more and more control of their day-to-day diabetes health considerations. Because even though they are some of the most courageous and levelheaded kids a person will ever meet, they are still kids. I think they want and need to know that we are here. “We” doesn’t have to mean just parents. If you end up trying Arden’s plan in school, please remind the teacher that your child’s diabetes independence doesn’t mean that they don’t need an adult to be concerned and watchful at times. My friend’s new book reminded me recently that sometimes the most responsible children tend to get forgotten and that space can lead to apathy for them. Sometimes the trust is easy to take advantage of, especially if the child is experiencing diabetes burnout. It can happen to anyone and it will, so always remember to be a presence during those formable years.

It’s my sincere wish that this series has helped you to feel powerful and more in control. I hope that something I’ve shared has given you a new perspective and made you feel like the idea of anything being possible isn’t just something you read on an Internet meme. I also want to thank you, because I learned something from writing these pieces. I learned that I was getting too complacent and that we should be taking what we’ve learned from the last year of managing Arden’s diabetes from school and make something new happen.

I’m very excited to share that by the time you read this Arden will have gone to a concert with her best friend and her friend’s mother, without me or my wife in attendance. I’m going to take the things that I’ve learned from Arden’s diabetes management at school and use them to let go a little more. I’m going to use them to give Arden more freedom, so that diabetes can be a smaller part of her life. It may take a lot of self-control not to drive up the interstate behind our friend’s car and sit in the parking lot of the stadium, but I’m going to use the same courage I felt in an e-mail one of you sent me recently. If you can read about what I do and find the strength to try… so can I.

Thank you so much for reading!

My best,
Scott

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READ THE SERIES

part 1
part 2
part 3
part 4
part 5
Currently reading

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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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