April 16, 2013
Fourteen months ago, Diabetes moved in. He showed up announced, uninvited, and staked claim on parts of our lives and home that weren't up for sale. Diabetes transformed our lives. Immediately, our primary concern was transformed from 'Who wants spaghetti for dinner?' to 'How many carbs are in that plate of spaghetti?' Suddenly, worrying about a kid crawling into bed with us at 0300 transformed into crawling out of bed nightly to check a blood sugar at 0300 to make sure that same kid is still capable of sneaking into our bed. Diabetes transformed a simple walk to the park into a planned event complete with snacks.
To say it has changed our lives is an understatement. Diabetes has taken over our lives. It's embedded in our psyche. It plagues my daily thoughts. It dominates my grocery list and consumes a good portion of our monthly budget. And, it's taken over my house.
Take a look:
Anyone who knows me knows that life makes no sense to me unless it's organized. It's truly a strength of mine. I don't know how anyone can attempt to manage T1D if they are not organized. First thing I did was make Aiden a diabetes notebook. Inside, I keep his completed weekly glucose logs, his Endocrinology reports, a nerdy flow chart tracking his A1Cs, testing papers, and lab orders for the next Endocrinology visit. The clipboard is for the current week's blood glucose logs. Notice the highlights...the bane of my existence.
In the background, you can see his Diabetes kit which includes alcohol swabs, extra AAA batteries, syringe, lancets, strips, meter, PDM (which controls his insulin pump) and glucose tablets.
Because wrapping your head around one isn't enough, we added another one 5 months later. Same set-up, color-coded. It helps, but it doesn't completely prevent me from screwing it up some days...and some very tired nights!
The clipboards, the notebooks and the kits all have a proper home (inside the drawers and cabinet below), but convenience and Diabetes has more often than not left them taking over my kitchen buffet counter. He wants to be out in the open, being noticed and watching us like a strange voyeur.
This is what I call "Diabetes Central". It's supposed to be this hip little prep counter next to my oven. But, since it's more out of the way of cooking space, Diabetes has claimed this space as it's primary home. White drawers with daily supplies. School PDM travel packs wedged to the left of the white drawers. Bottom cabinet shelf with notebooks, reference materials and OTC medications. Third and Fourth shelves house $1000s of Omnipods and overstock of pump supplies. Notice the classy Gain container that serves as a Sharps container. Throw in my calendar and some ADD meds, Spongebog Gummy Vitamins, and Diabetes Central is complete.
A glimpse into the bottom drawer. Really, it IS organized!! It's organized chaos. I know just what lies in all that madness. Medications. Needles. Lancets. Test strips. Current opened insulin. Alcohol (not the good kind). Cotton balls. Wraps for the Omnipods. Decorated duct tape for the Omnipods (which they never really use). Pump application and detaching supplies. Isn't life grand? Oh, and my spelunker headband flashlight that looks SO sexy in use, but since I'm not an octopus, I need it to see to do those mid-night glucose checks. (I think it's Diabetes way of making me look even more foolish than I already do. He's making fun of me, too!)
Because ruling Diabetes Central wasn't enough, Diabetes has staked claim on parts of my refrigerator. Where you store butter and eggs, I store the one hormone injection that keeps my sons alive. Oh, and the Juice Box that I'd never buy ordinarily because you're really just paying for the cute convenient packaging. For T1D families, that cute packaging is precisely the number of carbs we need to rescue a plummeting blood sugar. So, insulin and Juicy Juice have become roomies per the dictation of Diabetes. I'm sure he'll find a way to just command the entire fridge eventually. Give an inch, he'll take a mile.
Diabetes spread his tentacles to another cabinet facing (or you could blame Jerry for not mounting it on the cabinet door I intended him to...either way). This is our lifeline. At a glance, my co-pilot can look and see what's up today in regards to Diabetes. I made a form for each boy with insulin:carb ratios for each meal and basal rates that I update with every change. We use the dry erase to jot down carbs and servings for each meal. Because, I'm good, but Diabetes is better. He's zapped many of my brain cells, and I just can't always do it without a little "reminder" about what they ate., how many carbs per serving, and how many servings. ( Fun, huh? A huge math test, at least three times per day! Yippee! )
This board also has emergency #s, when the next insulin pump change is due, and WHO has pissed Mommy off and doesn't get to play electronics. THAT was the best thing I EVER put on this board (in Sharpie) because nobody wants their name up under that slot! :) (And, it helps me keep track of who lost privileges and for how long, lest I appear inconsistent because Diabetes consumes all my brain power. Now, I'm rambling).
I thought the days of carrying a D-bag (diaper bag) were over, but Diabetes laughed in my face. He demands I carry a bag on any outing that last longer than 52 nanoseconds. (Trust me, I've tried leaving it behind on the briefest of journeys only to be mocked by Diabetes! Any time you think you can pull one over on him or get ahead, he'll remind you who is boss!) I've yet to find the perfect bag that has everything just like I like it, but this one is close, and it's cutely monogrammed. Inside are emergency back-up supplies, Glucagon, extra pods, the Carb Counter book, and snacks. Whenever we leave, we throw in their kits and we have what we need. Have D-bag, will travel. (That's Diabetes Bag, not the current connotation of D-bag, although....yeah. T1D is a D-bag)
Diabetes took away the functionality of their pancreas cells, and it left this in it's place. Diabetes has transformed the way my boys have to manage and maintain their bodies. They have to have a daily reminder that they are different from their peers. It irritates their skin under the adhesive on occasion. It itches. It gets knocked around. Diabetes is not a cool Transformer like Optimus Prime. This disease costs tons of money like a Camaro, but unfortunately old Pods don't transform into Camaros.
Diabetes has been the uninvited guest in my boys' lives. He didn't ask. He just showed up unannounced, and like a bad in-law, he won't leave. He's taken over a part of their lives, but not all of it. They still play, and fight, and smile. They still learn, and grow, and dream. They are silly, and wicked smart, and funny. The little girls LOVE these handsome little dudes (God, help me!). And, they still love them some Frito Pie. (Take that, Diabetes!)
Diabetes has transformed our lives, some for the good, some for the worse. He fills me with worry, consumes my time, and deprives me of sleep. But, he cannot and won't dominate everything. Diabetes can't stop my boys from lovin' their Mommy. Diabetes can't stop them from living their lives; they just live it differently. Despite his best efforts, he only made my marriage stronger. And, Diabetes can't take away the coolest dog on the planet! :)
Don't ask me why the photo is sideways. Probably Diabetes screwin' with me!
Join us in our quest to cure Type One Diabetes.
(The A-squared Team)
If I we can cure Diabetes, then I halt the hostile takeover of my home and the transformation of my life!