Throw Back Thursdays and remembering my first weeks living with Type 1 Diabetes

For yesterday’s #TBT on Instagram, I decided to post a picture taken two months ago,  when I had to change my Omnipod in public at a Shake Shack, at the LA airport. (Deep fried portobello mushroom, anyone??? ) As we sat there savouring our pre-flight meal, I realized that it was better to change my pod now — rather than in the middle of a red-eye flight back home. What if there was turbulence? What if I dropped my insulin vial?   You can read more at @grownupdiabetes.

This got me thinking about my very first week of living with Type 1 diabetes. I’d spent about a week in the hospital, of which three of those days were in the emergency department. That first day in the ER was terrifying, especially when I found out the man two gurneys over had come in with a blood sugar of well over 70 (mmol) and was almost comatose. (Please note, this is a memory from over 25 years ago, so details are sketchy, but what I also recall, as I lay there figuring out my future, was that my husband-to-be and brother were talking to that patient’s wife about steak. Yep, steak. The couple were from Argentina, known for its beef, and I guess discussing the best cuts of meat was better than them considering my fate. Not to mention, I am a vegetarian, which made their chat all the more disturbing.)

During that first week, so much was drilled into me about how I would be the one to manage my diabetes. The nurses arrived like clockwork at every meal to give me my insulin shots and before bedtime. I was told that until I could inject insulin into my own belly, I wouldn’t be able to leave the hospital. I was given an orange on which to practice my injections. This confused me. My skin was nothing like that of an orange, but I guess it was better than playing  ‘x marks the spot’ on my stomach. I persisted, eventually realizing that  the force needed to pierce a peel was hopefully not what I’d need to inject myself. 

I was also told of the importance of a bed-time snack when I was given my night-time insulin (Lantus). That first night in my own cubicle in the ER, the nurse came in, and injected me with my overnight dose. And then she left. 

Wait, I thought. Where are those delicious pre-packaged graham crackers I had the night before? I’d seen a stack of shortbread cookies at the nursing station. Wouldn’t one of those be the perfect treat to ensure my blood sugar didn’t crash overnight?

I debated what to do next. Maybe there was a new protocol, and I didn’t really need a snack. Maybe I was cured.

I got up carefully, slipped on the slippers my parents had dropped off that morning, and shuffled to the nursing station.

Please note: This is an extremely busy ER department, and I’m sure delivering graham crackers aren’t number one on the list of things for these nurses to do while saving people’s lives. But this was day three of my new existence. I was positive that graham crackers were what would save me through the night.

“I am pretty sure those are mine,” I said, noticing the tray on a shelf behind where the nurse was sitting.  A sticker on the crackers had my name on them. She was busy reading a chart. “Oh, yes, was just about to come back to you, but got caught up …” she said, and started to get up. 

“No worries,” I noted. I reached out and snatched the crackers, and shuffled back to my room. I broke open the pack and munched away. I was safe for another night. 

Now, years later, do I really think things would have gone south without three graham crackers? Probably not. But that first week, and the months that followed, I was consumed with paranoia. 

Eventually, I mastered the injections, and left the hospital with a prescription for a pack of insulin pens as well as a couple of vials of insulin.

My family doctor who had diagnosed me, wanted me to come in and visit on a daily basis now that I was out of the hospital, to show her my blood sugar levels. This would have been sustainable if her office was in my apartment building, but it was a half hour drive away and after the second day, I told her that I loved her concern, but this was definitely not sustainable.  And, would only add to my worries and fears. 

My parents also called every morning, to see what my blood sugar was. Again, not sustainable. 

Half way into week two, my friend Debbie insisted that I join her for lunch at a restaurant a mere three blocks from my apartment. “What could possibly go wrong?” she asked. “You can run home if you have any issues.”

I figured it was time to test drive diabetes in the real world, so I loaded up my purse with my insulin pen, my glucometre, my test strips, my lancing device, several rolls of glucose tablets, an apple, my logbook to record my sugars. Oh, and I also had an ice pack.

I was convinced that insulin had to be kept cold at all times (and maybe it did in those days? This was Humulin R.) These days, only my unopened vials live in the butter compartment of our fridge. And when travelling, I use a frio pack. But more on that in a later post.

With a purse that was bulging at the seams, I walked to the restaurant, met my friend, sat down and surveyed the menu.

Panic set in: Where are the carb counts? I thought. My mind raced. I hadn’t yet memorized the carb value of every food that I might ever want to eat. 

Calculating my usual lunch at home was easy. Apple, slice of bread, piece of cheese. The bread had the grams of carbohydrates listed on the package. I’d learned that most average sized apples were 14 – 15 grams of carbs. The cheese? Not a carb.

At the restaurant, I’d settled on a large salad and a dinner roll. I headed downstairs to the restaurant bathroom, to test my blood and to take my shot. (It took me awhile to get used to testing and injecting my insulin in public.  And oh, how I hated setting up my glucometre kit on a wet bathroom counter, or worse, on my lap in the bathroom stall). 

We chatted through lunch, me talking about my diabetes which was now all consuming, and Debbie talking about anything else that could distract me. Lunch over, and I headed back to my apartment, waiting about an hour to see if I’d correctly calculated my bolus. I’d survived an outing! I could do this, I thought, seeing a good blood sugar reading. The insulin was safely back in the butter shelf in the fridge. Now what to have for dinner, and snack? Such decisions. But I’d conquered another day.

These days, I’m beyond freaking out if I don’t know the carb count of a menu item. I guesstimate — and if I’m wrong, I do a correction later when my blood sugar soars. My opened vial of Humalog is in my purse, at the ready if needed. And, in sharp contrast to those first few weeks of hiding “my condition”, I’m doing pump set changes in very public spaces.

And I’m very publicly sharing my thoughts about living with Type 1 diabetes.

I do, however, have some limits. As I sift through my instagram feed, I’m impressed and inspired by all those photos of people showing their pod, pump canula, or dexcom placements, on their arms, their bellies, their legs, their backs, etc.

I’m not quite ready to show you my dexcom and its esteemed place on my belly. Not because I don’t embrace my diabetes; I’m just not quite ready to embrace my middle-aged stomach.

But who knows? Time will tell…

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