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
Whack a Nurse
It happens every time that we change Arden's CGM. Not some of the time or once in a while, not now and again - EVERY fu*$ing time.
"Arden we need to swap your Dexcom sensor"
A moment later Arden and I meet up, usually at the kitchen island, she hops up to bring her hip to my eye level, all is well – until I reach out to remove the sensor.
Arden instantly tenses up, becomes frightened and speaks the following words - EVERY time.
She always begins with an apology for being anxious, "I'm sorry - I'm just afraid that the wire will come out".
That's it, she worries that the wire will break free of the sensor and stay embedded in her skin, she further believes with all of her heart that this will lead her to a hospital visit where the wire will be surgically removed.
Do you know why she thinks this... let me tell you.
Because of one poorly thought out moment that happened in 2010 when a nurse told Arden this could perhaps happen and that she should be very careful. "I've heard that the wire can break off and you'll have to come to the hospital to have it removed" - The person who said that was an idiot, not for saying it, but for saying it in front of Arden.
By the way, the wire has never broken off. I actually believe that Arden has as much chance of seeing the Loch Ness Monster as she does of needing surgery to remove a CGM wire, but thanks to dopey the nurse... she just can't shake those five year old words. It's now fIve years and probably hundreds of CGM swaps later and Arden still has this reaction EVERY time. One poorly considered utterance to a six year old and nothing I have yet to say has helped Arden to relax enough to forget those words.
I've tried to reason with her - "Arden we do this all of the time, has the wire ever come out?"
I've tried joking, reassuring, hugging. I've tried everything that a reasonable parent could think of and nothing ever works. By the way, Arden doesn't think the CGM hurts, she loves wearing it and receiving the data. Never-the-less she experiences a moment of real terror each time that we swap her site. Breaks my heart, frustrates my mind and dings my soul...
Last night I tried something different in the hopes of alleviating her needless anguish. I cursed.
"I'm sorry - I'm just afraid that the wire will come out..."
"Arden, I wish the god damn nurse who told you that the wire could break was here right now. I would smack her in the head!", I began. Then I continued telling Arden how angry I was at the nurse for saying something like that in front of her when she was too young to understand the intricacy of her words.
Here's to hoping that the next swap is different and that some well-meaning, yet ultimately mis-guided person won't say something else that terrifies my kid.
I think that I really would whack her in the head if she was here.
I Wonder Why Diabetes Picked Me
There I was sitting at Arden's little desk for back to school night wondering if I could be home in time to eat dinner while it was still warm.
The teacher spoke about class culture, math and the bell schedule... pretty standard stuff. While nervous parents asked questions I looked through Arden's desk and wrote her a note about my excitement for her upcoming school year.
It felt like the evening was drawing to a close when Arden's teacher said, "The children wrote a poem from writing prompts, I'll pass them around so you can read them".
When I grasped Arden's in my hand I immediately recognized the format from a few years prior when my son Cole was in fifth grade. I smiled because he filled in the first line almost identically to Arden.
The first prompt is, "I am"
Cole wrote athletic and smart. Arden said, athletic and funny.
My eyes moved to the second line with proud anticipation.
"I wonder..."
I don't remember what Cole wondered about in the second line of his poem, but I can tell you that Arden's query about life was, most certainly, not the same.
I wonder why diabetes picked me as it's target, Arden asked.
A fist sized lump formed in my throat as I picked a spot on the wall to stare at while I collected myself. I won't lie, I had to bear down hard to stop from crying. I quickly slapped a fake smile on my face and kept reading, scared of what other diabetes related thoughts Arden harbors – but there were none.
When I was finished the poem I snuck a peak at some of the other kid's work. One girl wondered about zebra strips, another why recess was so short - whimsical thoughts from the minds of ten year olds. There was a small second when I could have indulged the pity that I was feeling and I almost did.
Then I thought, "Is it really that bad if Arden wonders why she got diabetes when so many others didn't? The simple answer was no. I found myself feeling proud that she wonders about her life and reminded myself that her writing didn't focus only on diabetes, in fact the poem was nearly thirty lines in length and this was the only mention. Arden saw herself as funny, athletic and confident about her future. She watches nature with curiosity and though Arden prefers quiet when she works, she doesn't judge others who don't. She didn't say she was sad, burdened and everything else about how she sees herself was intensely positive. There was absolutely no reason why I should allow myself to feel like her curiosity about diabetes was anything but that, curiosity. There are so many joyous aspects to who Arden is, she was celebrating them and she deserved for me to do the same.
I choose to be happy about all that Arden understands about her life and proud that she can reflect on her type I diabetes without wallowing. If she can do it, then I can too.
Arden won't know this for a long time but when she wrote that poem, she unwittingly added to my diabetes community with support that buoyed me. And so today I share her words with you in hopes that they will do the same.
The lesson that I took from my little girl's poem is a simple but profound truth.
Diabetes sucks but it isn't who we are. I decide when, where and how it makes me feel.
My name is Scott. I am a writer, a father, a husband and though sometimes I wonder why diabetes choose my daughter, I wonder a little less today because of her clarity and wisdom.
Video: Sierra Sandison Miss America Montage
Sierra Sandison finished off her whirlwind ride on Sunday by winning the 2015 People's Choice Award at the Miss America Pageant (Way to pull together DOC!).
When Sierra appeared on our television screen Arden said, "That's me!". Those two little words are all you need to know about what Sierra's #ShowMeYourPump campaign has meant to everyone who lives with diabetes.
I hope you enjoy this short montage that I put together in celebration of Sierra's wonderful accomplishment.
Thank you Sierra and congratulations!
Diabetes and fear don't have to go together.