Kris Freeman's Triathlon with Dexcom and Omnipod

Hello everyone! This is a guest post (sorta) from former Olympic Cross Country skier Kris Freeman. Actually, this wasn't written for Arden's Day - it's from Kris's Facebook page and I am posting it here with his permission. We talk on the Juicebox Podcast all of the time about how I use Arden's Dexcom data to make small adjustments to her insulin with settings that are available on her Omnipod. When I saw Kris's post I thought, "this is the next level of those ideas" and I wanted to share his process with you. Please visit Kris on FB or his blog, he's also been featured on Arden's Day a number of times and been a guest on the podcast twice.  -- #BoldWithInsulin

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Yesterday I competed in and won the Sea to Summit triathlon. The race traditionally starts with a 1.5 mile swim in the Salmon Falls river, continues with a 92 mile bike ride to the WildCat MT ski area parking lot, and finishes with a run up the Tuckerman Ravine trail to the Summit of MT Washington.

Unfortunately due to the heavy rains NH has had over the previous week, a lot of fecal matter has ended up in our waterways and the bacteria level in the river was above the safety limit. The swim was canceled and the event became a biathlon.

The swim would have taken approximately 40 minutes so I had to change my insulin dosing strategy to accommodate the slightly shorter race. My glycogen stores were topped off so I was running a 24/7 basal rate of 1.0 units per hour on my Omnipod. To cover race nerves, readily available glycogen stores and carb/calorie intake I settled on the following protocol. 

Hour 1 = 1.0 units per hour
Hour 2 = .7 units per hour
Hour 3 = .3 units per hour
Hour 4 = .3 units per hour
Hour 5 = .3 units per hour
Hour 5-5.5 = .3 units per hour
Hour 5.5- to finish = off

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It is very difficult to estimate how much insulin I will need in an event this long. I have to guess how insulin sensitive my body will become from prolonged exertion as well as how many calories I will need to fuel myself. The program that I used yesterday ended up being a little too aggressive and I had to force feed myself at the end of the race. On the bike I drank 60 ounces of Gatorade, 20 ounces of custom Cola/Coffee mix, and 24 ounces of RedBull. I had planned to take in solid food but I was sweating buckets and my stomach was not calling for it. 

The bike took me four hours and ten minutes and my glucose was 116 at the transition to running. I drank another 16 ounces of Gatorade during the first 40 minutes of the hike. At this point my glucose was 117. I decided to pull off the Omnipod that was delivering .25 units per hour as I did not want to have to overfeed to get to the top of the mountain. I was wearing two pods and the other one was delivering the minimum dosage of .05 units per hour. 

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I ended up having to overfeed anyway. I drank another 16 ounces of Gatorade over the next 20 minutes but my sugar dropped to 80. I had to pull out my emergency flask filled with 5 Untapped Maple syrup gels. The flask contained 105 grams of sugar and I finished it five minutes before winning the race in five hours and forty-four minutes. 

Every race is a learning experience. If I could do this race over I would reduce the first hour dosage to .7 units, the second hour to .5 and then I would have run .3 up until 4 hours at which point I would have suspended delivery. The attached picture is a graph of my glucose on a Dexcom during the race. It looks "perfect" but I really would have preferred to not take on over 100 carbs in the last 30 minutes of the race.

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Sugar Rush

Erin was my guest on episode 170 of the Juicebox Podcast. Check out her episode and her blog, 'Sugar Rush Survivors'. 

After my son’s diagnosis in 2013 at the age of 21 months old I did what a lot of parents do when faced with a life altering diagnosis. I searched online for anyone sharing their experiences with type 1 diabetes (T1D). I joined Facebook groups, read blogs and listened to podcasts. One source I found was Arden’s Day by Scott Benner.

A few months ago on one of the T1D Facebook pages I follow I saw a post by a familiar name. Scott asked for input from fellow parents of children with T1D for his Juicebox Podcast. I thanked him for his podcast with Dr. Denise Faustman and offered to talk with him for the podcast. We connected on Skype and recorded an episode titled, 'Just another Tuesday with Type 1 Diabetes'.

I have experienced the instant bond among T1D parents many times now and it just never gets old. Being able to look another person in the eyes, knowing that they understand the triumphs and fears of this daily life is incredibly reassuring. To hear compassion in another person’s voice in answer to my questions and frustrations makes it easier to continue with the hundreds of decisions I make to keep my son’s blood sugar in range as much as I possibly can.

Scott has brought that compassion and understanding to listeners all over the world and is continuing to make the diabetic online community (DOC) a landing pad of understanding and education. When we spoke for the podcast he encouraged me to lower my son’s Dexcom high alert from 170 to 130. I had been nervous to lower it prior to talking to him but I tried it. It has helped us keep his blood sugar in range by alerting us of rising blood sugar so we can act on it sooner than we had previously.

I found another powerful connection when I met my friend and blog partner Alese. When my son was diagnosed a few months shy of his second birthday we were in the hospital for four days of intense education before we were allowed to be discharged. We had so much information crammed into our heads in such a short time but my son was still so young that he couldn’t tell us how he felt with highs, lows, or the in-betweens. When I met Alese I was grateful that she could translate how highs and lows feel for her. But I was shocked and dismayed to find how little information she was given upon diagnosis as an adult.

As we realized how powerful this connection and exchange was for the two of us, we decided we couldn’t keep it to ourselves, and the idea of jointly writing a blog was born. Sugar Rush Survivors is our attempt to share with others what has worked for us, what still frustrates us, and what lifts us up in our daily management of T1D. In addition to the blog page we manage the Sugar Rush Survivors presence on Facebook, Instagram, and Twitter.

I am grateful for the opportunity to speak on Juicebox Podcast and write on Sugar Rush Survivors adding my voice to the many others in the DOC to say, “You are not alone!”

Blog: www.sugarrushsurvivors.com
Facebook: https://m.facebook.com/SugarRushSurvivors/
Instagram: https://www.instagram.com/sugarrushsurvivors/
Twitter: https://mobile.twitter.com/contact_srs

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10 Steps to Take After Your Insurance Denies an Insulin Pump or CGM

If you haven't already listened to D-Mom and volunteer insurance advocate Samantha Arceneaux on the Juicebox Podcast go ahead and click play on that player you see below. -- Sam is a never ending font of information on how best to appeal your insulin pump or continuous glucose monitor insurance denial and she was kind enough to write this guest post for Arden's Day. The mother to Mikayla a T1 5 year old diagnosed at 22 months old, Samantha has spent the last several years as a volunteer diabetes insurance advocate, helping other parents fight insurance companies for insulin pump and CGM coverage.

Sam is brilliant and these are her 10 steps to take when you've been denied by your evil overlords (medical insurance company). 

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Steps When Being Denied by Your Insurance:

1. Did you receive a denial letter? If not, investigate to find out why. Was the supplier incorrect? Were they in-network?
2. Double check your pharmacy benefits to see if you can gain the item that way.
3. If it’s a company plan, ask your HR department if they might be able to override the denial.
4. Ask your doctor to complete a peer-to-peer review with the insurance company.
5. If still denied, ask the doctor for a letter of medical necessity.
6. Look at why they are denying, then compare against your medical records and the insurance’s medical/clinical policy or guideline. Find if they incorrectly applied their policy to your situation, or if they are using outdated data.
7. Do your research. See if there are new studies that prove your medical request is supported by professional recommendations or research studies. Aim to have 2-5 relevant studies/statements.
8. Go for the appeal. Insurances want a medical need established and why it (the item being requested) has the potential to lower their costs. It cannot be emphasized enough, what you put into it is what you can expect to get out of it.
   a) Include what the system/supply does medically in a few short sentences, don’t assume they know. It will make the rest of your arguments more effective if they understand the concept behind the device/supply.
   b) A modicum of formality can be helpful as well, as the insurance will be unsure of who actually wrote it; was this the patient, an advocate, an attorney, a doctor? It may imply to the insurance reviewer that you are not going away easily.
   c) Fight against any outdated research the insurance uses in their medical policy, or if they failed to gather/review your medical data that supports your need for the device/supply.
   d) Quotes from the research studies or statements are helpful, since they will not be looking up the studies themselves. Paraphrasing is also encouraged. Just remember to cite the study/professional organization each time.
   e) Give real life examples on how this device/product can help you (refrain from convenience examples). For instance, do not talk about how a CGM can be remotely viewed and how this saves the hassle of checking in with your child. Rather, talk about how the device alerts you to rapidly changing glucose values so that you can take steps to prevent a crisis from 
9. So you win the appeal and get approval. I strongly advise getting it in writing before you order the supply/device. This will be your evidence in the event something isn’t properly posted in their system, such as length of approval (should be for 1 year). 
10. If you do not overturn the denial on appeal, try again. Typically you will have two internal reviews that are done by the insurance companies before going on to the external review. The external review is completed by independent reviewers and tends to be more impartial, which means a higher chance of getting approved. (Medicaid/Medicare products may have more levels of appeal available).

Other useful information:

For non-covered items: You will need to request a formulary exception. This means that you recognize that it isn’t a covered product but still feel that it is medically necessary and should be covered by your insurance. Treat this as an appeal situation. 

For non-preferred items: If a drug or supply is non-preferred, you will ask for a tier exception. This is basically where you give the insurance company a medical reason why you cannot utilize the preferred item and ask that they give you the non-preferred item AT the preferred rate. This typically is a pharmacy situation. 

Visit Sam's blog to read her other detailed information regarding insurance denials. Sam rocks! 

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Diabetes Support on Instagram

Jenna Feely was a recent guest on my podcast where she talked about being diagnosed at thirteen years old, her adolescences with type 1 and her outlook on her life with the disease. About halfway through the conversation I asked Jenna about her advocacy online and she told me about her Instagram page (She has nearly 5,000 followers!), later I asked her if she would write a guest post for Arden's Day about her experience with type 1 advocacy and how she uses her Instagram page to help people. I hope you enjoy her post and take time to listen to her episode, 'Eighteen and Already Amazing'! - Best, Scott

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When I am not feeling my best, I seek support.  When I am feeling positive, I try to give support.

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When I was diagnosed with type 1 diabetes, I was 13 years old and I had no idea what type 1 diabetes was.  I also didn’t know that social media could have really helped me in that moment. It took me a couple of years to realize that social media could be a huge outlet to connect with others going through the same daily monitoring to take care of themselves.

It can be easy to feel isolated when living with type 1 diabetes.

We have to take care of ourselves, and monitor our health in ways that most will never have to.  Whether you prefer Facebook, Instagram, YouTube, or other sites that provide support, you can voice your concerns, your worries, your progress, or just have a good laugh!

Jenna is in Instagram @DiabetesTips - Search in your app or click on this image to check her out and follow.

Social media has provided an outlet for me that helps me relate to others, and hopefully help others with type 1 diabetes.  I love being able to support others who may be having a tough day, and talking to others who are dealing with the same bumps that I am.  It can be very easy to feel different, or cut off from the world when you are living with a chronic disease.  However, diabetes has actually helped me in many ways that, as a society I feel we tend to ignore.  Yes, I have had sleepless nights, scary lows, scary highs…..but through all that pain I have also learned to move on, and to get on with life.  Diabetes has taught me to be more patient with others as well as myself.  I have also learned to forgive others as well as myself.  As you all probably know, if you don’t forgive yourself for those little mistakes, you will go crazy!

When you know how it feels to have a chronic illness, you can empathize with others who are also going through something similar, even if it is not type 1.

We can learn from each other through social media. 

We can all share tips, and tricks that we may have found over the years whether they relate to physical or emotional wellness in our management.  Social media also helps me stay inspired in my management.  When I am not feeling my best, I seek support.  When I am feeling positive, I try to give support.  We can all give and take from each other.  Through social media, we can help others forgive themselves, support each other through sleepless nights, and also add a little humor to type 1! 

You can find Jenna on Instagram @DiabetesTips and I am on Instagram @ArdensDay. Jenna's episode of the Juicebox Podcast can be found here, listened to below, on iTunes or where ever you get your podcast fix.

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Will Hauver

I would like to thank Lydall Hauver for her courage and for her desire to support the diabetes community. It speaks to the strength of our community that in the wake of what is undoubtably Lyndall's greatest personal tragedy, she would allow herself to be interviewed. I can promise you that if you have type 1 diabetes or love someone that does, this post and the podcast episode of my conversation with Lyndall will ultimately fill your heart with love, hope and a sincere desire to live well with type 1. So grab a tissue, read Lyndall's post and then listen to me chat with her and Will's good friend Paige, about his life and legacy. - My best, Scott

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The tragic and devastating death of our son Will, a beautiful person on the inside, and a good-looking man on the outside, has taught me something very valuable.

One person has the ability to make a positive and significant impact on this world.

More photos of Will at JuiceboxPodcast.com

It has been made clear to our family that Will made a huge impact on many people in his 22 years. The quality of Will’s life, and what he did with those 22 years was incredible. Wherever he went, he made an impact. We have heard over and over again about how Will’s compassion, his way of including everyone, his friendship, ‘saved’ many a friend from transferring from college, from quitting a team, from not joining in a great event. Will had such a handle on the ‘big picture’ - what was important in life. He was often sought out by his friends for advice and help. Using his humor he could really relate his advice without being preachy and condescending. He had such an easy, approachable, welcoming way about him, with the confidence that others admired and respected.

One person has the ability to make a positive and significant impact on this world.

“It is not length of life, but depth of life.”

— Ralph Waldo Emerson

This past summer Will was nominated to complete the ice bucket challenge for ALS awareness and donations. While donating $48.25 to an ALS charity (to an ALS charity Brigance Brigade) he filmed a video, which is very funny, and created a challenge for the JDRF and “LIVEabetes”. After Will passed away, his good friend from high school, Paige, one person, galvanized behind this comic but meaningful video, and created a movement to raise funds for the JDRF. Through a lot of hard work, a lot of learning about different social media options and a lot of creativity, Paige created a great group of supporters, myself, and my family included, to create a worldwide challenge raising awareness and money for type 1 diabetes. Incredibly, to date, we have raised over $80,000 for the JDRF to fund a cure for this dreadful disease.

Paige and Will, two young people, have made such an impact on this world, simply by being good people. They chose to live their lives by these simple principles: be kind to others, be inclusive, help others, know who you are and do not compromise your morals to fit in and make deep and meaningful connections with people you encounter. After Will’s death people from around the world rallied behind the man he was, to support the Egg Crack Challenge Paige worked hard to promote and grow. We now have an amazing community of friends, new and old, who have banded together to raise awareness and funds for a cure for type 1 diabetes.

One person has the ability to make a positive and significant impact on this world.

Our daughter Megan and Tommy are like Will and Paige, two people who have a keen sense of self, who stay true to that self. Similar to Paige they have worked hard to promote the Egg Crack Challenge. Additionally they have created T-shirts, posters and other item to share the joy Will created as an artist to raise money for type 1 diabetes and for scholarships in Will’s name.

Will told his girlfriend weeks before his death, “Each day is a gift, that is why they call it the present.” His ability to use humor, and kindness to live each day to the fullest, to make an impact on each person he encountered, has rubbed off on me, and on our entire family. This attitude is why we get up each day and try to salvage what we can out of each day, no matter how hard and how sad we may feel. Knowing that one person has the ability to make a positive and huge impact on this world makes me move forward to create my own positive, impact, each day. 

- Lyndall Hauver, Will's Mother

You can listen to my conversation with Lyndall and Paige with the player below, on Juicebox Podcast, iTunes, Stitcher or your favorite podcast app. 

links you need:

Will's JDRF Donation Page
Egg Crack on Facebook
Will's Egg Crack Video on YouTube
Rollins College Memorial Service for Will
Egg Crack Homepage
Shop for gear and bracelets (Supports JDRF and scholorships)

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