The time, energy and intellectual capacity of being a pancreas is daunting. “I am often the only person around who needs to do complicated mathematical equations before eating anything, before going anywhere, before mowing my lawn, shoveling snow, taking a walk, or before going to sleep at night. Diabetes is always on my mind, whether I like it or not,” writes Scott K. Johnson. Diagnosed at age 5 with Type one diabetes, Scott knows what he is talking about.
The Work of the Pancreas
The pancreas is an amazing organ. Through the release of insulin, the pancreas monitors the energy needs of the cells in the body. The subtle dance of glucose monitoring is done without thought, every moment of our lives. However, for those with type one diabetes, that dance has to be performed through finger pricks, test strips, injections and careful monitoring of food intake, physical exercise and stress. Life with diabetes is about being aware of how these interactions affect blood sugar and insulin needs. No wonder Scott states, “Living with diabetes is very hard and takes a lot of work. In an average day I won’t cross paths with anyone who really understands….The isolation is crippling at times.”
Scott’s Diabetes Blog
Writing has been Scott’s salvation. “I was diagnosed so young. I can’t remember much about it, but I have to figure that I didn’t understand much of what was happening. As I grew up I started to experience…the weight of it. These thoughts and feelings started to bubble to the surface, and I struggled…I found writing to be helpful in dealing with that,” he relates.
Scott has created community online through blogging at Scott’s Diabetes and co-hosting DSMA (diabetes social media advocacy) Live, a blog radio program. Through these mediums, Scott has a devoted following of people experiencing diabetes.
Highs and Lows
After nine years, he’s posted on just about everything. He provides honest discussions of the highs and lows (literally) of blood glucose management. “Almost every low blood sugar is a bit scary. They (the lows) trigger a …instinctual survival reaction. It’s terribly hard to stay calm and treat the lows sensibly,” says Scott. “I had a handful of bad lows when I was younger where I passed out or had seizures during the night. I also had a low that caused me to pass out on Christmas Eve Day last year. That was the first time in twenty years that I passed out from a low, and it really shook my confidence.”
Yet Scott doesn’t let his fears take over his life. One of Scott’s passions is being physically active, even through participation in extreme sports. “Last year I won a scholarship from TeamWILD for a cycling training program. I used it to train for a 100-mile bike ride, which I successfully completed in June, 2012,” he says. He used this experience to perform “mini-experiments” on himself to see how his body and blood sugar reacts to exercise. “Little experiments, lots of testing, lots of keeping notes,” he explains.
“The exercise of assigning words and phrases to what was going on in my head and heart was therapeutic for me,” Scott relates. But he is also interested in educating about diabetes with a section of his blog entitled “Type 1 University.” And he’s grateful to his fellow bloggers and online friends, “Thankfully I have the diabetes online community to turn to. They get it. They understand. They are there 24×7. It’s a beautiful thing. I don’t know what I’d do without them.”
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