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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Guest Post from Teddy's Mum

In a recent Juicebox Podcast Scott Benner said he wanted his daughter to ‘be herself as much of the day as possible’. That really struck a chord with me.

I want you to be yourself...

I just want him to be normal. I thought this over and over again during the first few months after my son’s diagnosis. It is very hard to accept that your child has changed forever. I grieved the loss of his carefree childhood. I felt over-whelmed by the responsibility of keeping him alive. He was three and he was our angel.

EVERY MINUTE of EVERY DAY we try and keep our son’s blood glucose as close to normal as possible. Teddy is now seven and his HbA1c is low enough that most of the time I am able to brush away dark thoughts about his long-term health.

I just want him to be normal. I still do. I want him to be himself and FEEL himself. I look at Teddy’s BGs and each number makes me wonder how he feels inside.

A low number can make this sweet natured boy become bad-tempered and rude, clumsy and sad. He drops his finger-pricker when I ask him to test. How does Teddy feel? Is his reality skewed? He is not himself. He needs sugar.

With a high number I sometimes see Teddy staring into space. He doesn’t listen to me. Can’t concentrate. He can be unhappy. I imagine the sugar pumping through his veins making him feel sluggish and his senses less sharp. He is being poisoned. Water. Give him water, and insulin of course.

Teddy

Recently at school Teddy was told off for shouting out in class. He started to cry. He cried and cried and said he wanted to go home. His carer realised that his blood sugar was quite high. Maybe this caused him to shout out. It was out of character. They couldn’t stop him crying and all the time his blood sugar was rising because he was distressed and this was making him cry more. They felt really bad for him and took him for a walk outside and gave him computer time to cheer him up. At the end of the school day his eyes were still puffy and red. We all learnt a lesson from that day.

For the last 4 weeks things have been good with Teddy’s BGs. Lovely Dexcom graphs lower my stress levels. But I have noticed his mood swings and behaviour changing with lower highs and higher lows as if he has become more sensitive to being out of range. I work all the time at keeping him in range. I feel so responsible for changes in his character and behaviour that may be caused by lows or highs. When he is yo-yoing I can’t imagine how he feels in his mind and body. But my little boy is amazing as he always bounces back to being his gorgeous sweet happy little self.

Anna Hutton - Teddy's Mum

Anna was a recent guest on my podcast... You can listen here.

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I Can: A Diabetes Blog Week Day 1 Post by Nicky Gil

Nicky Gil is thirteen year old Ainsleigh's mom...  Nicky wanted to write for blog week and tell the story of the fear that she felt as she contemplated meal preparation during the first days of her daughter's diagnosis with type 1 diabetes. Her words really get to the heart of how a type 1 diagnosis can make a person feel.

I can make eggs 10 different ways...

I can make eggs 10 different ways. Just ask my daughter. That’s all she ate in the first few days after diagnosis when my refrigerator became this vast, cold box of completely forbidden and potentially deadly foods; but eggs, the “incredible, edible” were warm, filling and safe.  We’d had nutrition training the first week of diagnosis.  We’d met with the dietitian, the endocrinologist, multiple nurses – all sources of solid, reliable dietary guidance; this was not the issue – fear was.  I would stand in my kitchen at mealtime, paralyzed that my wrong choice would cost her a leg, a kidney, her eyesight, her life.  I wasn’t ready risk it for the sake of a piece of toast.  Eggs!  Eggs were safe.

hypoglycemia, hyperglycemia, bolus, basal, diabetic ketoacidosis,“carb to insulin” ratio

The eggs weren’t the only scrambled things those first few days.  New vocabulary bounced around my brain in no particular order - hypoglycemia, hyperglycemia, bolus, basal, diabetic ketoacidosis,“carb to insulin” ratio - flashcards wouldn’t have been a bad idea.   Meal creation was too daunting a task, I thought, given my limited knowledge of what was “safe.”  Thankfully, our diagnosis occurred in the summer, when I had access to a carton of eggs and a stove all day long and mercifully didn’t have to contemplate meals beyond the house just yet.  Perhaps, this would have nudged me to conquer my fear a couple days sooner and saved my family my unfortunate foray into poaching – perhaps.

My daughter took her reduced option menu in stride as, I’m sure, my confusion was nothing compared to hers.  Overnight, her world had completely transformed.  The pantry during the summers her first eight years was an open door – stocked (somewhat) nutritionally as the hours between a prepared breakfast and a prepared dinner were much more free flowing than during the school year.  Our pantry might as well have had an armed guard standing next to it the first week of diagnosis; it was right up there with the refrigerator in terms of its standing as a weapon of mass destruction.  In addition to her now (severely limited) food choices, we kept coming at her with small needles a few times a day and sticking them into her fingers and slighter bigger needles at mealtimes and sticking those into her stomach.  And we were full of (misguided) directions those first few days – no soccer, no ice cream, no sleepovers, drink this, eat your eggs.

Nicky Gil

It took three days for my daughter to decide she’d had enough.  As I approached with the needle, my shaking hand not very reassuring despite her telling me in exasperation multiple times, “It doesn’t hurt,” she took the insulin pen, looked me in the eye and said, “I’ll do it!”  Three days.  She’d had enough.  She’d was growing weary of fear – mine and hers.  I followed her lead, albeit a little more slowly.  She seized control of her situation in three days.  I branched out to toast with the eggs a few days after.  She learned to prick her own finger and I began to mentally unlock the pantry and the refrigerator.  As she learned to cope, I learned to manage my anxiety.

Four and half years in and I’ve just picked up a package of double stuffed Oreos at her request.  Funny, this isn’t something I would have given her pre diagnosis but, now, I fund the rebellious cookies.  She’ll carb count, she’ll program her pump, I’ll advise against more than one.  Our meals now include a variety of foods, most healthy, some not so healthy.  She ice skates daily, she goes to sleepovers (and texts me her numbers religiously if she wants to be allowed to go to the next one), she packs her lunch bag.  We worked our way slowly out of our first protein packed, miserable days.  We fought fear in our own way that first week, now we fight diabetes together, daily.  

Ainsleigh still eats eggs...

Nicky Gil - Mom of Ainsleigh Gil, age 13
Richmond, VA

Remember, anyone that wants to write for blog week and doesn't have an outlet for their words only needs to email me - I am happy to give your writing a home. - Scott

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Keep it to yourself: A Diabetes Blog Week Day 2 Post by Kelly Griffin

I put out the word on episode 15 of my podcast... If anyone in the diabetes online community didn't have their own blog and wanted to participate in Diabetes Blog Week, I'd host their blog post here on Arden's Day. Almost immediately, Kelly Griffin emailed me to say that she wanted to contribute a post. Initially Kelly considered writing anonymously but late yesterday she decided to not just attribute her name, but also her face to her writing. Kelly may not have been completely "out of the shadows" when she wrote this blog post... but she certainly is now! Please help me welcome Kelly into the light... - Scott

Keep it to yourself...

Thank you, Scott Benner and Karen Graffeo, for giving me the opportunity to write about a topic that seems to define my life with type 1 diabetes. To give a brief history, I was diagnosed with type 1 diabetes about 13 years ago. It was a puzzle to my doctor at the time, who assumed because I was in my  mid 20's, I must have type 2. It was actually the CDE (Certified Diabetes Educator) who determined that I was mostly likely a type 1 in a “honeymoon” phase. She turned out to be correct, and I quickly found an endocrinologist who helped me move to MDI. 

That was a time of significant transition in my life. I had been a professional student since undergrad, and was about to move to New York City to pursue a performance based career. When I shared my diagnosis with some people in the industry, I was quickly told to keep it to myself. They cared about me, and worried I might be looked at differently, or miss opportunities because I would be perceived as ill or somehow incapable. I didn't question it. Be it right or wrong, that was the way it was, and I adhered to that. I worked very hard to make sure that no one knew about my type 1.

I spent my whole life studying and preparing for this career, and I couldn't let my diagnosis become an issue now. 

Since diagnosis, I have been in pretty tight control of my diabetes, but at one visit I expressed frustration to my doctor about the amount of injections that I was giving each day, and that it was becoming harder to explain my trips to the restroom before every meal. For years, my endocrinologists have wanted me to be on a pump, but I refused because I couldn't image how in the world that would work in a quick costume change backstage. I could have several people helping me in and out of complicated clothing. Where would the pump go? How could I do this so that they wouldn't know? 

Now that I think back on it, that was my first glimpse into the DOC (Diabetes Online Community). I found forums of people talking about this “tubeless” pump. I started looking into it, and thought that might just work. I could easily hide it under a camisole while in a stage production, and no one would ever know. So, I started pumping with the OmniPod about 8 years ago, and have been using it ever since. 

Secrecy has its burdens.

Kelly Griffin

The longer I live with T1D, the more I feel the need to talk about it with someone. I need community. When you are diagnosed as an adult, you never have the experience of anyone else taking care of you. I know this is naïve, but I sometimes envy hearing about people diagnosed as children. I wish that my family knew what I deal with on a daily basis, and how hard it can be to stay in control. I have been the only one in my world who knows what I am going through. 

It was 13 years before I met another person with type 1.  I actually saw an article about this woman in a local publication, and semi-stalked her on Facebook until we were able to meet for coffee. It was the most amazing experience to sit down with someone who pulled out a pump that was “alarming” during our meeting. I am not the only one? So, I'm not the only one who sits with one arm digging into my abdomen for 3 hours in a live theater performance trying to muffle the sound of my pod beeping away? I'm not the only one who tries to discreetly light up my Dexcom screen in a movie theater to check my numbers? I'm not the only one who sits in fear of my Dexcom vibrating during church every Sunday? 

That meeting was so incredibly freeing, and it left me wanting more connection. I quickly delved into the DOC at that point. I found Scott Benner, Diabetic Danica, Kerri Sparling, and Cherise Shockley, to name just a few. Most of these people have no idea who I am, but I feel like I have community through their efforts, and I cannot express my gratitude enough. I am amazed at the strength I see in the DOC. The women, men, and children, who proudly display their pumps with or without tubing, check their blood sugars in public places, and post online without reservation or worry about what their professional colleagues might think. Those of you living boldly and out loud, inspire me.

I am choosing to walk out of the secrecy a little bit at a time. I'm not completely out of the shadows yet, but I'm working my way there. I see that I have to be bold if we're ever going to find a cure. I have to find a way of being comfortable speaking up. This is my first step, and I thank you for the opportunity. 

-Kelly Griffin

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What a wonderfully honest and brave post from Kelly - bravo!

Remember, anyone that wants to write for blog week and doesn't have an outlet for their words only needs to email me - I am happy to give your writing a home. - Scott