WEGO Health sponsors the National Health Blog Post Month each November… I picked through the topics and smooshed up my posts all in one!
I’m a junkie for health apps that work well and help me manage the details of T1 diabetes. I’ve tried many, and have found two that work well for our needs.
I kicked Diasend to the curb with Blue Loop, an app that allows me to record the details of everyday disease management, including blood glucose levels, insulin doses, carbs consumed, infusion set changes, and other important details. I like the report format that sorts information over a 24-hour period so that I can spot trends more easily. Also, Madeline’s school nurse can log on to input information and her endocrinologist can review the data at each quarterly appointment.
The Calorie King app boasts a huge database of nutrition information for nearly every food we consume. I love that I don’t have to lug that bulky book around in Madeline’s kit anymore.
I think I can…juggle the demands of a full time job, motherhood and family manager on a mere 5 hours of sleep that was gathered in 45-minute increments.
Here’s the most asinine bit of advice I’ve received, relative to managing T1D: a nutritionist recommended that I give Madeline foods that are artificially sweetened in order to reduce her carb intake.
That was the first, and last, time I ever visited that “professional.”
“…they will be able to say that she stood in the storm, and when the wind did not blow her way–and surely it has not–she adjusted her sails.”–Elizabeth Edwards
“At the timberline where the storms strike with the greatest fury, the sturdiest trees are found.”–Anonymous
“I can be changed by what happens to me. But I refuse to be reduced by it.” –Maya Angelou
The Role of Alternative Medicine
If I had it to do all over again, I would become a naturopathic physician. I’ve always had an interest in “alternative” health issues, but got serious about developing my laywoman’s knowledge when my mother was diagnosed with cancer several years ago. I’m no expert, but I know enough now to be able to incorporate “alternative” health approaches into my family’s life every single day. We don’t shun conventional medicine completely–there certainly is a role for modern medical marvels–but aside from the use of insulin, the treatment of urgent or emergency issues, and preventative screenings like mammograms and blood panels, we rarely use allopathic medical interventions.
By the way, I don’t consider nature-derived interventions developed and refined over thousands of years to be “alternative.” We consume nutrient-dense, inflammation-reducing foods most of the time, use herbal remedies to prevent and treat illness and injury, incorporate grounding into our daily routine, and basically do whatever we can to keep connected to the outdoor world.
When Madeline was first diagnosed, I seriously considered putting my career on hold for a while. It wasn’t a financially feasible option, really, and it turned out to be an unnecessary action because my workplace—the organization, the supervisors, the colleagues—considered my role as a caregiver as the highest priority. I’ve been offered limitless support that has made it possible for me to be a caregiver while preserving my career. I will be forever grateful.
Advice to the Newbies
1. Even in the darkest hour, there is always light.
2. Be aware of the real and present dangers of T1D, as these inform every single thing you will do as an Artificial Pancreas for your child. But find a way to stash that knowledge away, so that fear doesn’t cloud your ability to make decisions, find humor, and feel joy.
3. Healthy skepticism about research and development is a necessity. While it’s always good to hope for a cure, and a noble action to raise funds for the organizations doing R & D on products and medical interventions that might ease the burden on our T1D loved ones… don’t put all your eggs in the Cure Basket.
Educate the Expert
It was actually our endocrinologist and CDE who told me that reducing Madeline’s carb intake was the single most important strategy I could use for impacting her insulin resistance, managing her glucose levels, and staving off other health complications. It was like getting classified information, chock full of secrecy and subversion, and completely opposed to the conventional wisdom that screams out “let her eat whatever she wants—just cover it with insulin!”
I resisted at first, then relented to the experiment. Now, Madeline’s team salivates over herT1D stats and shares our story with other families who are seeking more effective approaches to disease management. Please do not feel sorry for her or consider her “deprived” because she rarely eats pizza or pasta. Those foods—which despite proper insulin dosing, triggers BG levels in the 300s for hours on end—make Madeline feel miserable: irritable, exhausted, nauseous, bloated, poisoned. She understands the connection, and she makes different choices as a result.
Social Media Stars
Read this blog for its wit, brevity, intelligence and curiosity. And this blog for a glimpse into the hopeful future of your child. This one too for its depth and eloquence. And while you’re at it, blow your mind with this.
Black Friday Survival
Remember the days when your children were infants, and every single outing you made with them required extensive planning and preparation? Those days are here to stay in our family, thanks to T1D. There is no such thing as a spontaneous visit to a friend’s house, a quick trip to the store, or an easy excursion. Here’s a snapshot of the things I have to consider when heading out:
Do I have enough supplies to treat hypoglycemia?
Is Madeline’s kit stocked with supplies for dosing and infusion set changes?
Do I have my phone?
Do I have essentials in the car…puke bucket, paper towels, trash bags, wipes, Kleenex, sugar sources, water?
Where are the nearby Irving stations? These nearly always have clean bathrooms, low carb snacks, and fast sugar sources.
Speaking of snacks… do I have enough of stuff that won’t spike BG levels?
If we have to catch a meal on the road… what are the options beyond the local pizza joint or pasta house?
Have I chosen a travel route that has regular access to service stations or rest areas?
If the car breaks down, if we are delayed by traffic issues or bad weather… do I have everything I need to comfortably manage T1D for several hours?
And the perennial favorite: Do I have my brain on today?