In the early months of 2015, as some of you know, our little one quickly got frightening skinny, was listless, insatiably thirsty, got up every two hours at night to use the bathroom. She was skinny because her body was starving and consuming all her body fat -- it couldn't process the sugar from food and use it for energy. She was listless because the brain depends on energy from sugar to properly function. She was thirsty because her blood sugar was way too high, and her body was trying to flush out the toxins. She had to pee, because she was drinking too much water. She couldn't sleep because she was in 5th grade and concerned she'd wet the bed.
Her diagnosis, done easily with her pediatrician's prick of the finger to test her blood sugar levels, kicked off a full day of tests and T1D education for her and her four parents at Los Angeles Children's Hospital. She was pale, weak, frightened, and henceforth, until transitioning to an insulin pump later that autumn, on a every-three-hours glucose testing regimen (day and night) and 7-10 insulin shots a day.
In equipment terms, that's 7-10 syringes daily, two types of insulin in two different vials plus backup in the event of emergency (e.g. earthquakes), 8-16 testing strips daily, alcohol swabs, a glucose testing monitor, many doctor visits, glucagon and an emergency kit in case she passes out from low blood sugar and can't ingest juice or another simple sugar by mouth. Since that autumn, she no longer needs regular shots because now she has a catheter with an inset stuck to alternating hips, changed every three days. The inset connects directly to a pump that looks like a pink pager hooked to the waistband of her clothes. Since the insulin is a constant drip, she doesn't need shots anymore in the arm or thighs, but we still have the back-up syringes in case the battery-operated pump fails.
None of this addresses the depression that she entered the day she was diagnosed and didn't come out of for most of the year. Nor does it take into account the missed school days, because she was exhausted from bouncing blood sugar levels as the doctors tried to find the right ratios, and the public schools in our town, due to tight budgets, all share a nurse, who was only at her school periodically, and our girl was frightened that no knowledgeable adult was there to consistently help in case she needed it. It doesn't address the fact that she *did* need it, and so frequently just stayed home, and now, though money is tighter, goes to a Waldorf school with a class size less than a third of her public class, even with combined grades. It doesn't address how, for most of that first year, she didn't know how to eat because food was both necessary and a poison to her body. It doesn't address the mindless waiter who, just last week, brought her a regular Coke instead of diet, which shot her blood sugar sky high.
And it doesn't address the lifetime of medical care and equipment that she will need just to manage this disease, to keep her healthy as she is right now, due to medical research, technology advances, JDRF advocacy and education, and Dr. Fisher and her incredible team at Children's Hospital Los Angeles.
But, it does address the recent House vote to repeal and replace Obamacare with a system that does not protect those with previously diagnosed conditions, like T1D.
If you know someone with T1D --- for example, our girl, now 13, --- consider sending this letter, which asks Congress to Consider Type 1 Diabetes Patients when the Senate looks to Reform the American Healthcare System.
Feel free to use any of our story as part of your letter.