Trickster, Dancer, Healer: Life Lessons in Chronic Medical Condition Management

I’ve checked my wireless continuous glucose monitor and adjusted the basal insulin rate on my pump accordingly for the activity level that I anticipate over the next 2 hours. I change from my running shoes into my weathered, muddy barn boots, grab the halter, a lead, a couple of treats and a dressage whip. The sky is silver-gray this morning as I approach the gate to the paddock, and the ground is wet. I call his name and he lifts his big white head and turns it to face me. The rest of him doesn’t move, just that long sinuous neck. He looks at me for a moment and then drops his head and goes back to eating hay from the flake at his feet. Knowing he will not come to me today, I open the gate and set out across the field to him, squishing through a mixture of mud, shit, weeds and straw that is wet from this morning’s rain, sinking to my ankles at every step. You can’t always have what you want when you want it, and sometimes you have to work harder for it.

The smell of barn swells up around me as I make my [...] continue the story

Medical Residents and Type 1 Diabetes: You Can’t Help, But Please Do No Harm

Over the past 41 years of living with Type 1 Diabetes, I have met a lot of medical Residents: doctors who have completed their initial training, but are now doing further study on the road to becoming specialists – basically, newly-minted GPs with aspirations of greater things. Because my medical team has always been situated in or associated with teaching hospitals, Residents are part of the territory.

I try to maintain an open mind and a positive attitude whenever I am told that a Resident is studying with my team and asked if I would mind if he or she either sat in on my appointment, or saw me in advance of my meeting with my Endo. After all, if we don’t allow these people to deal with real patients while they are under the supervision of a specialist, how will they learn to do it properly? I would much rather meet them in the structured environment of their education than after they hang out their specialist shingle. So I have participated in the training of many, many Residents in the course of my many years of living with T1D.

Some of them have been wonderful. More of them have been arrogant, [...] continue the story

Lost in Transition

I was diagnosed with T1D at the age of 14 and a half, just before I was about to start high school in the fall of 1973. I spent August 29th in a ketoacidotic coma and most of September in hospital recovering and learning how to give myself needles. There were no doctors in Thunder Bay at that time who had the necessary expertise to help me manage my condition, and the nurses, in my experience, were often dangerously misinformed.  It was rough going, and the attitude was:  try this and see, try that and see. Bring her to Emerg if she loses consciousness. There was no glucose self-monitoring, and the only way to find out what my BG was, was to go to the hospital and get it tested.  I did test my urine at home, which told me what my BG was several hours before. So it was kinda like crawling through a dark tunnel trying to figure out where I was going by the feel of the surfaces around me, never really knowing where I was or what was next. I was dangerously thin and the advice was to fatten me up by feeding me about 3500 calories [...] continue the story

Coming Out

So, after 40 years of following the first rule of T1D Club: Don’t talk about T1D, and disseminating the information that I live with this condition on a need-to-know basis only, this has been an emotionally challenging week for me.  ‘Coming out’ as a person living with T1D in a very public way, using my August 14 gig as a vehicle to end the secrecy and raise awareness feels terrifying. What will people think of me now? What will the reaction be?  The reason I went underground in the first place was to avoid dealing with people’s adverse reactions to finding out: The uneducated, unsophisticated, unsolicited and dangerous healthcare advice (“Don’t eat anything with gluten”; “Stop eating any carbohydrates”; “Take (choose one: garlic/vitamin E/Omega 3/ St. John’s Wort) supplements and you won’t need insulin”; “You aren’t allowed to have sugar, so I’m not going to give you that orange juice you just asked me for, even if you say you are having an insulin reaction”; and so on, ad nauseum); The fear and exclusion: (“Lynda can’t come to the sleepover because she might die in the night and spoil the party”; “I (teacher) can’t possibly take Lynda on the field trip; I have [...] continue the story

Still Standing on my Original Two Feet

August 29 – My Coma Day August 29, 2013, is the 40th anniversary of my Coma Day — the day I spent in a coma while my doctors tried to figure out what was wrong with me.  Turned out it was Type 1 Diabetes, and they were able to bring me back to consciousness the next day.  Every year on that day, I celebrate another year of surviving and thriving in spite of all the dire predictions I was given by the medical community during my slow, painful progress back to a point where I could be released from hospital (I think it was a few months, but it was so long ago, and I was so young, I think I have skipped over that in my memory to a great degree).  In a nutshell, it went something like this: You will never:             live past 40             have kids             be able to participate in sports             be healthy             be normal             be able to manage a challenging job You will:.             have your feet and legs amputated             lose kidney function and need transplants and dialysis             have heart disease and multiple heart attacks             go blind             spend a lot of time in hospital             die young …and so on…. As this milestone [...] continue the story