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.
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.
Click to enlarge
Asante Solutions: Gone in a Snap
Makers of the Snap Insulin Pump closing up shop...
From the companies website - http://www.snappump.com/node/453
“We regret to inform you that as of Friday, May 15, 2015, Asante Solutions, maker of the Snap Insulin Pump, will be closing our doors and the company will no longer be in business. If you are a Snap user, please contact your healthcare provider with any clinical questions you have. For questions about your pump supplies, please contact the distributor that has been shipping your supplies.
If you are interested in transitioning to a new pump, we suggest you call Animas to learn more about the new Animas Vibe, which is integrated with Dexcom CGM. Animas is graciously offering a limited time offer to all existing Snap users to transition to the Animas Vibe pump. If you are interested in learning more, simply call 1-877-937-7867 x1562 or visit their website.
We sincerely regret this situation.
Asante Solutions”
Though I know that many use and love Animas pumps... In my opinion, this would be a great time to check out the Omnipod! My heart goes out to Snap users as I know how difficult it can be to lose diabetes technology that is working for you. I hope that you all find something new that fits in your life. Wishing you good luck!
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
Clean It Out: A Diabetes Blog Week Day 3 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 -- Kelly must have caught the blogging bug because she sent me a note on Wednesday and asked if she could contribute again...
Clean it out...
At first when I thought about cleaning things out, I couldn't help but think of the pile of test strips at the bottom of my purse. (Did I just admit to that?) From what I've read in the DOC, that seems to be a pretty common occurrence. Since I'm in good company, I'll move on to a different kind of cleaning.
What is Control?
Today, I am clearing out my need to always be in control. One of the great lessons that comes with T1D is that you are not in control. When I was in school, I loved math. Absolutely LOVED it (I know that's crazy). I used to ask other kids if I could complete their algebra problems in study hall because the logic of it made me so happy. I love when I can follow a formula and know that I'm going to end up with the right answer.
When I started on insulin, I treated it much like math. I figured that I just needed to work with it long enough to find that perfect formula, and then it would be easy. Giving up control - there are days that are better than others, but it's never easy or predictable. I had no idea how many variables were involved. I had no idea how many questions could never be answered. No matter how many experts are involved in my care, there are days when it's still a mystery to me.
No One is Perfect?
Today, I clear out the need to always be perfect. Over the years, I have tried very hard to have the perfect T1D diet (whatever that is). I have been vegan, vegetarian, paleo, high carb, low carb...you name it, I've tried it. In the end, I always find that if I restrict myself too much, I will end up drowning in a bowl of Frosted Flakes before the day is over. I have to remind myself that it's not about perfection. I need to enjoy life, and enjoy food in moderation. I had to find what worked best for me, and allow myself to have some freedom in my choices.
Diabetes and Fear Don't Have to go Together!
Today, I clear out the fear. I have an endo appointment coming up in a couple of weeks. I always get nervous around my appointments. It's as if I keep waiting for the day that I'll hear some bad news. I've maintained tight control since diagnosis (13 years ago), and to date, I've never had an issue. We're always told that if we keep tight control, we can live a normal life free of any complications. I hope that's true. I know that it is for some people, but perhaps not others. This used to really concern me. What would I do if something happened? What if I needed help? I'm letting go of the fear. What kind of present can I have if I live afraid of the future? What kind of future will I create if its foundation is fear? I will live my best life each day. I will take care of myself with God's help in the best way I can. I will lean on my friends, family, and the DOC for support when I need it. I will focus on educating those around me about T1D, and supporting those who struggle.
I clear out my need to always be in control. I clear out the need to always be perfect. I clear out the fear. In their place, I invite hope, courage, support from the community, and the opportunity to give back.
-Kelly Griffin
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