Following last week’s post about how I push to appear normal, life decided to imitate art and illustrate why I don’t like to talk about my day-to-day because it would just be scary and overwhelming.
I had a two-day event this week I was really excited about. It was a new area to learn about and the hosts wanted my input for a roundtable they were holding. Everything went well the first day, but when I took off my jacket before getting in the car, one of what I view as my insulin pump’s design flaws – the lip on the part that goes into my body (infusion set) -- caught in the fabric of my shirt and came out.
I didn’t know it and as I drove home, so I was unaware that my blood sugar was rising quickly. I got home about 45 minutes later, and replaced the infusion set as soon as I realized it. I knew it would require some monitoring, but I wasn’t worried. Things like this were not uncommon.
I also had to eat dinner. After that, I watched in horror as the trend line on my devices rose in a nearly vertical line, settling at the device max of 401. Which was deceptive, because it was actually closer to 600, a dangerous level that I have experienced before at home but is a good reason to consider a trip to the hospital. I knew I could handle it though, so I dumped insulin into my body through the pump and emergency injections.
It took a long time to come down, and while it lingered at dangerous levels too high for my devices to read, the only indicator I had of which way my blood sugar was going was the little tiny arrow on the Fitbit watch face that connects to everything.
It was a long night, but by the morning, I was at a good level, and I was determined not to miss the second day even if I had to mainline caffeine.
My body and my devices had other plans. What’s that saying about the best laid plans of mice and men?
I ate a small continental breakfast with my fellow attendees and a short time later watched as, for the second time in 12 hours, my blood sugar rose in a nearly straight line to what I assume was the same level as the night before. The devices maxed out again and I felt the same way, even though I didn’t have the backup equipment to get the real number.
For two hours, no matter how much insulin I gave myself through the pump, nothing happened. I was confused because it was a new infusion site, so absorption should have been good. But it wasn’t, and I noticed that my pump software was not reacting as it should, either.
Perhaps if I had been in the 300s, I would have stayed, but the lack of response from either my body or my pump, and the feeling that if I didn’t get home soon, I would find myself in the hospital, spurred me to leave after the first session. Also, I realized that after giving myself so much insulin, I no longer had enough to get me through the day, even if I were at a normal blood sugar. I apologized to my hosts, blamed what I believed was a malfunctioning pump, and got home as quickly as I could.
This time, I didn’t want it to take a long time to recover. My weight and the insulin resistance that comes with it meant it would be at least two hours before anything happened, so I gathered a pitcher of water, all my equipment, the TV remote, phone charger, and a bottle of juice to my bedside table, gave myself a whopping 85 units of insulin and laid down to wait (for perspective, pre-insulin resistance, I took somewhere between 40 and 60 units per day). I might have caught up on sleep from my deficit of the night before, but my building is installing roof anchors this week and they literally drilled right above my apartment all day except for one hour for lunch.
Since I didn’t have much to do but doze, think, and check the Fitbit, I eventually figured out that the new infusion set must have gone into a site that already had scar tissue. There had been no pinch or pain on insertion, which is a clue, so I changed it again. And the pump’s malfunction had to do with its automatic mode. It is programmed to only allow a certain amount of insulin in the body, and since I had been dumping so much, even though it wasn’t being absorbed properly, the machine still thought I had that much on board. There is no way to change it except to turn off the automatic mode, and that would come with issues of its own if I fell asleep and dropped too low from the 85 units, since it automatically turns off the base rate if I drop too low. (This is why I counterintuitively dragged the bottle of juice over to the bedroom, too.)
About five hours later, I was ready to try provoking a response from my body (eating carbohydrates) again. I was relieved when the line stayed within my prescribed range. I must have had 100 ounces of water to stave off the feared hospital visit (severe dehydration could have sent me right over the edge), and I severely curbed any more carb intake for the rest of the night. I felt sore and stiff, as if someone had stuffed me in a dryer and turned it on. I went to sleep early -- as soon as I was sure I would wake up at a few hundred points below 600.
The next day was perfectly on track.
I can’t share things like this – details or frequency. It scares the crap out of people. The very few I shared this with, because I’m not dumb enough to assume it can’t get worse and I needed periodic check-ins, were pretty freaked out until I had gone 24 hours safely. But living in this body, all I could think was that it wasn’t the first time, and it wouldn’t be the last. It was just the latest – granted, extreme – challenge to overcome. So, yeah, that happened. But it’s already time to move on.