Saturday, May 18, 2013
Quiet. Floor boards creak.
Meter. Flashlight. Lancet. Blood.
Low. Drowsy juice. Kiss.
This year Diabetes Art moves up from the Wildcard choices as we all channel our creativity with art in the broadest sense. Do some “traditional” art like drawing, painting, collage or any other craft you enjoy. Or look to the literary arts and perhaps write a d-poem or share and discuss a favorite quote. Groove to some musical arts by sharing a song that inspires you diabetes-wise, reworking some song lyrics with a d-twist, or even writing your own song. Don’t forget dramatic arts too, perhaps you can create a diabetes reality show or play. These are just a starting point today – there are no right or wrong ways to get creative!
Friday, May 17, 2013
Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions?
When my daughter was diagnosed with diabetes, we were transferred to a major Children's Hospital. We spent that first week on a unit which was the destination for kids with new diabetes diagnoses, but which also treated kids with many other conditions.
A day or two after our arrival, I met the mother of a child with Cystic Fibrosis. This child (and her mother) had spent more days at that hospital that year than they had at home. Their most recent admission had included a diagnosis of diabetes on top of the usual pulmonary and gastrointestinal issues they dealt with upon every visit.
Since then we've met families whose children have autism, celiac disease, asthma, complicated lung conditions, cardiac issues, life-threatening allergies and more. Some of them we count among our closest friends. We've watched friends struggle taking a child with autism to get blood taken, an ordeal incomparable to taking my child who is anxious but ultimately able to understand and tolerate the process. We've dined out with friends for whom not knowing what's in a plate of food could be a matter of life or death, not just a long night of blood sugar checks and corrections.
Every chronic condition comes with its own set of daily obstacles and fears. Each has its own learning curve. Each has its own daily tasks to be conquered.
Yet as a parent of a child with a chronic condition, I've found great empathy among parents whose kids have other chronic issues. We all find ourselves in doctor's offices and hospitals. We all have personal relationships with the school nurse. We're all desperately trying to raise our children to live full, happy lives while carrying the weight of their diagnoses.
The more I learn from people's first-hand experiences with other chronic diseases, the less inclined I am to want to trade. From those first days in a hospital full of incredibly ill children, I knew we'd drawn a much, much longer straw than many other families.
One of the great gifts diabetes has given us (really...it can give gifts though it mostly gives us a hard time) is that of relationships. There are the instant bonds among people who also live with diabetes, but there are also these connections which are so much more easily made and cemented with the glue of shared experience with kids with chronic conditions.
Thursday, May 16, 2013
What is the ideal diabetes service animal? Think beyond the obvious and be creative in explaining why your choice is a good one. For example, maybe a seal would make a good service animal - it flaps its flippers and barks every time you get a good blood sugar reading!
Hoppy would make an excellent service animal.
He's my daughter's stuffed rabbit. She has fallen asleep with Hoppy in her arms every night of her life. As she sees it, Hoppy is a nocturnal rabbit who stays up all night watching over her while she sleeps.
What could be better than to train Hoppy and his many peers as diabetes service animals?
Imagine the training class. An educator is surrounded by a circle of teddy bears, stuffed dogs, cats, cows, and frogs. Perhaps there's an American Girl Doll, or a Barbie. They spend time discussing signs and symptoms of hypoglycemia in the children they love. They're all schooled in glucometer use, parameters for treatment of high and low blood sugars and how to administer glucagon.
Who could be more suitable for this job? Except for the rare time he's accidentally thrown on the floor, Hoppy is at my daughter's side all night. His primary purpose in life is to look out for her while she sleeps. He has a tough job already, don't get me wrong. He's responsible for soothing the anxieties of a middle-schooler after a long day. Further back in his job description, he's been in charge of closet monsters, bad dreams, thunderstorms, the dark, and a myriad of other concerns.
Yet as a best-loved toy, his dedication to his owner knows no bounds. It's time to set up some training sessions for Hoppy and his peers.
Wednesday, May 15, 2013
Today we’re going to share our most memorable diabetes day. You can take this anywhere.... your or your loved one's diagnosis, a bad low, a bad high, a big success, any day that you’d like to share.
'Most' memorable day would still be diagnosis, but that's already been covered here, so I've chosen another of many memorable diabetes moments:
My sister-in-law's wedding day was memorable for many reasons. It was a gorgeous fall day. The cememony was held outdoors in the gazebo on a quaint New England town green. My husband and I were both in the bridal party. My daughter was about to turn three, and looked adorable wearing a wrist corsage especially chosen by the bride.
What makes this a memorable diabetes day is that my daughter started pumping insulin just days before the wedding.
Until she started pumping, we were giving my daughter shots of NPH insulin twice a day and covering her biggest meals with shots of humalog. There was therefore no wiggle room in a very tight schedule. If she didn't eat snacks when the NPH peaked, she'd experience low blood sugars. If she ate more carbs than 'prescribed,' her blood sugar would be high. This highly regulated eating routine made every day difficult, but made special occasions a nightmare.
Imagine, if you will, bringing a 2 year old to a party where snacks are out on a table. People are eating crackers, grapes, cookies and mini hot dogs. Your child may have 8 grams of carbohydrates at exactly 3 p.m., and nothing else to eat until 'dinner time' at 6. We had lived this scenario for nearly two years. This wedding day brought into focus how significantly our lives had just changed with a new pump tucked neatly under that little party dress.
Allowing my daughter to eat a couple of ritz crackers while we waited for our turn with the photographer was life-changing and no, I'm not using that term loosely.
The main meal was served at 1:30 p.m., which just a week before would have required us to pack a separate lunch for noon. We then would have spent our mealitme distracting her from the fact that everyone else was eating and all she got was a glass of crystal-light and some celery sticks.
When her aunt and new uncle cut their cake at 4 p.m., she was first in line for a slice and I calculated my first SWAG bolus.
That October day represented new beginnings. It was the start of a new and happy life for my sister-in-law and her husband. It was also the start of a slightly simpler life for our family; one in which we could participate in social events without the anxiety and discomfort our previous diabetes routine entailed.
Tuesday, May 14, 2013
Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) - get creative!! What are you trying to change and what have you experienced that makes you want this change?
We, the undersigned, petition medical professionals to tell us the truth about the level of discomfort we can anticipate when undergoing tests and procedures.
We particularly request the elimination of the following two phrases:
1. 'You'll just feel a little pinch.'
2. 'This might be a little uncomfortable.'
Even a savvy three year old can tell you 'just a little pinch' means 'I'm about to stab you with something long and sharp.' Please give up the phrase. Nobody believes you.
'This might be a little uncomfortable' is used inaccurately by medical professionals in multiple settings. Examples of the use of this vast understatement include but are not limited to:
An orthopedist resetting a broken arm.
An orthodontist taking impressions for braces.
A pediatrician taking a sample from the back of the throat for a strep test.
An eye doctor putting in drops for dilation.
We, the undersigned, demand less deception and more respect for our intelligence and common sense.
Monday, May 13, 2013
Today's prompt: Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?
Embedded in this question, I think, is another: How helpful, kind and realistic is your endocrinology team?
I know plenty of people equate the endo appoitment to a big test, or a performance evaluation. These people try to hide their recent out of range numbers. If they can't do that, they find themselves cowering in their chairs feeling berated by the discussion of them.
To me, the only way to get the most out of endocrinology appointments is to share as much information as possible. There's really nothing I 'hope they don't see.' The more they see, the more they can help.
Why the 300 the day before yesterday? Bagel day at school. She forgot to combo-bolus in the nurse's office, but even when she does she comes out high. Any ideas, doc?
"Don't eat bagels?" (Said with a wry smile...we love his sense of humor.) But then he goes on, "I like that it looks like you kept checking and correcting. In those situations, that's the best you can do and you did it well. I had a patient the other day tell me she boluses a full 20 minutes before the bagel and sets a temp basal rate when she starts eating it. You could try something like that next time, maybe. Basically, bagels are just bad news...but once in a while you're gonna eat one, so keep experimenting." Not only did we benefit from sharing our bagel disaster, but we also benefitted from someone else doing the same. We came away feeling empowered, not guilty.
We were fortunate to start out at diagnosis with an endocrinology team who understood that there was more in my daughter's life than diabetes. When we moved, we did our homework and found a doctor with the same philosophy. When he moved, we changed practices. Perhaps the types of professionals we've contracted with for care influences my perspective.
Our type of endocrinologist is one who would ideally follow my daughter around at all times, looking at her diabetes management and how it intersects with the rest of her life. He or she would spout out helpful advice along life's diabetes journey.
Alright, maybe being followed by an endocrinologist 'at all times' would get a little creepy. Yet at the heart of the matter, the idea is the same. Those extra eyes on the quarterly downloaded blood sugars are so much more helpful if they're able to see as much as possible of the person's life those numbers came from. That's why we share it all.
Friday, May 10, 2013
It's been a busy week with a busy upcoming weekend. My thoughts are scattered and it feels impossible to create an entire post about one topic. So here are a few bits and pieces of what's on my mind:
My daughter had her standardized testing this week, which went better than it has other years, diabetes-wise. She's tired of peanut butter whole wheat toast every morning, but there was no repeat of the infamous 3rd grade nurse's office workout. I think we have a test-day breakfast winner.
A new favorite product is Gatorade's G2. We bought it to aid in recovery from a stomach bug, but it's become a must for softball games too. With something like seven carbs per 12 ounces, it's just the thing for both a sick, dehydrated kid and a budding athlete.
Last but certainly not least, 'who's your diabetes co-star' would be a great question for Diabetes Blog Week next year. For now, there are great prompts for all seven days next week plus two wildcards to choose from. I'll be participating and can't wait to read the thoughts of my fellow bloggers. Stay tuned!