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
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
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
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
Sometimes Your Blog Makes Me Feel Like a Failure
A long time ago on a blog far far away lived the father of a little girl who has type 1 diabetes...
Many years ago during a conversation with a fellow diabetes parent named Michelle I learned something about my blog that I was painfully unaware of... "Sometimes", Michelle told me, "Sometimes your blog makes me feel like a failure". This was of course, not my goal.
I was crushed because it wasn't Michelle who failed, it was me
Michelle and Mason
Michelle went on to share with me that while she enjoyed Arden's Day and found it to be refreshing and honest, it felt like my writing focused more on what went right with diabetes and in fact that the lack of relatable 'diabetes fail' conversations left her feeling as if everyone was 'succeeding' but her and that she was failing her son Mason.
I took her words to heart
I spent the next few days rereading my own blog and I could see what Michelle was talking about. I wasn't purposely just talking about the 'good stuff' but my attempt to be positive for the community was definitely coming off slanted in that direction. So I changed how I share online with Michelle's brave words as my guide. The adjustment was difficult in many ways but also incredibly rewarding. Anyway, that was a long time ago and today I pride myself on how honest and completely transparent this blog is - Not only is Arden's Day now a complete reflection of my life with type 1 diabetes but I've seen the power of sharing the good and the bad and how it has helped to buoy other families in their times of trouble.
I owe all of that, to Michelle Golladay and she is this weeks guest on the Juicebox podcast.
As you listen to Michelle and I talk about parenting and diabetes she'll spend a few moments telling me about a Parent Advisor Program that she has helped to set up at the Akron Children's Hospital - bringing the DOC IRL! I've included links here and in the show notes of the podcast, local Ohio residents and those interested in learning more should check them out.
You can listen to our conversation right here with the embedded player, on iTunes, Stitcher or your favorite podcast application.
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
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