I’d been having chest pains.
My doctor performed a normal EKG
in her office, but she sent me for a stress test at the hospital anyway. They
attached probes to my chest and back and cranked up the speed and incline on
the treadmill and watched my heart work.
After the test, I sat in the
parking lot, just breathing for a second, in and out, slowly, like I’d done a thousand
times in the past year when my anxiety rolled in like a storm, when the phone
rang. It was Finn’s endocrinologist.
My heart rate jacked way up
again.
***
Nine months had passed since Finn
was diagnosed with Type 1 diabetes at age five. Caring for his newly diagnosed little self
was the most stressful thing I’d ever done in my life. I ran constantly at a
high anxiety level, even when I wasn’t with him. I was afraid of dangerous low
blood sugars, and I blamed myself for every high blood sugar.
To compound things, the medical
bills were overwhelming. When Finn was diagnosed, my husband Todd was only three weeks out
from back surgery, his second in one year. He didn’t work for sixteen weeks that
year, and we felt it. Add to that thousands in medical bills and a new monthly
cost for diabetic supplies; we were drowning financially. We knew we’d never
pay off the $14,000 of debt we’d accumulated on a budget that was already stretched
at the seams. So I got a job at a fine dining restaurant a mile from my house.
It was fun, and a nice break from the kids,
but waiting tables is stressful, too, especially at a bustling restaurant with
an upscale clientele.
***
The endocrinologist had news following
Finn’s first round of blood work: Finn
had celiac disease.
I immediately burst into tears. While
I was stoic and in denial when Finn was diagnosed with diabetes, I was a
blubbering mess with the diagnosis of celiac disease. This second diagnoses
meant more was wrong with my precious
boy, and another lifestyle change. The doctor compassionately explained,
through my bitter tears, that Finn would have to eat a gluten-free diet for the
rest of his life, and he would need an endoscopy to confirm the diagnosis.
(Read: more medical bills.)
Hot tears fell onto the steering
wheel. It was all just too much. To make things worse, Todd was away on a
business trip and I had to bear the news alone.
A celiac disease diagnosis meant
that I could no longer rely on processed food for dinner on the nights when I
worked. There were plenty of gluten-free pre-prepared foods on the market, but the
volume of food that my four growing children ate made it cost prohibitive. No
more could we get Chinese take-out on Sunday afternoons or pizza delivery on
Friday nights. Restaurant eating was challenging at best, and it didn’t seem
fair that the other kids could have chicken fingers with fries while Finn had a
grilled chicken breast and roasted broccoli. At home, I had to make everything from scratch. This was not easy
for a working mom of four. I scoured Pinterest for recipes, but found mostly
deserts and complicated flour mixes. In addition, gluten free breads and cookies
and flour had almost fifty percent higher carb counts, so feeding him to
fullness meant less reliance on carbs overall. Nothing like pushing chicken on
a six year-old. “Here, honey, eat more chicken! Or maybe some cheese?”
In many ways, the diagnosis of
celiac disease was harder for me to deal with than the diabetes. While not life
threatening like diabetes, celiac disease was life altering in a different way.
No longer could he “eat anything” with the right amount of insulin. School functions, birthday parties, cook-outs: eating was harder than ever.
***
The stress test showed that there
was nothing wrong with my heart. The doctor suggested that perhaps I was just out
of shape. (Thanks for that, Doc.) Three years into our journey with diabetes, I
still wrestle with anxiety over my son’s health, but not like I did in those
first brutal months. My rolling boil of stress is more like a low simmer.
We did pay off that $14,000 debt,
including all our medical bills and lost income with the money I made
waitressing. We learned laser focus with our financial goals and how to live on
less. We saved three thousand dollars the
year we stopped getting weekly takeout. We rarely go out to eat as a whole
family, but ice cream is gluten-free and relatively inexpensive. (Yay for Rita’s!)
We got a medical grant that helped pay for supplies for a year, including the
start-up costs for a Dexcom continuous glucose monitor and Omnipod
insulin pump. Then we moved to a state that provides medical assistance for
children with Type 1 diabetes. (I almost
fell over when I found out.)
I learned how to feed Finn (and
the rest of the family) gluten-free. I rely heavily on rice and potatoes and
tortilla chips for inexpensive, gluten-free carbs. We eat mostly whole foods
like chicken, ground turkey and lots of fruits and vegetables. I shop at Aldi’s
for gluten-free pretzels and crackers and the occasional cake or brownie mix,
and Bob’s Red Mill 1 for 1 baking flour is my new best friend. With it, I make
pancakes and waffles and my favorite,
oatmeal chocolate chip cookies. We rely on Udi’s bread and pizza crusts. Friday
night is still pizza night, but we make our own. Its (almost) more fun that
way. And our fast food? Rotisserie chicken and baby carrots, or cheese and
crackers and sliced apples.
The biggest surprise? We are
healthier than ever as a family. I gave up gluten, too, because I found that I
felt a lot better. My skin cleared up and I felt less bloated. I often tell
Finn that his diseases have made our family healthier than ever.
I would never choose this journey
into the world of chronic illness. However, I have learned there are always reasons to
be thankful.
