Sugar Surfer Patti Kasper has been a PWD x 51 years. Patti composed the post below to share some highlights of her journey towards Sugar Surfing. (Steve Ponder MD, CDE)
I am among a wonderful group of T1D warriors who have survived our daily battle for over 50 years, despite decades in what I call the “medical dark ages.” Home blood testing was not available until just before I went off to college as a teen. Frankly, I find it a miracle I survived the “static thinking” models of diabetes management so prevalent in my youth. I never attempted to take good control of my disease until college, when I began to see real time results of my choices.
I typically have jumped on new T1 technologies relatively soon after they become available. I have also tried to participate in T1 research whenever possible. For instance, I have been part of the EDIC study through the University of Pittsburgh since its founding and I continue to fill out follow up questionnaires and to offer myself up as a Guinea pig whenever I pass through Pittsburgh if they are doing any follow up studies. I have also had the privilege of participating in an AP trial at Sansum Clinic in Santa Barbara. Exciting things are in our future!
But it never fails to amaze me that there remains so much ignorance and lack of training among medical professionals who seemingly don’t give diabetes much thought after completing that hour long course in med school.
I recall a bizarre encounter when a physician wanted to push cinnamon
treatments on me. I challenged him to explain how that works with
I think of my search for a new PCP, and his staring at my pump, exclaiming
“COOL!!!... What is it?” This was followed by me walking out
the door shortly after. LOL
I think of all the tragic deaths from misdiagnoses that would have been
understandable in the 60s when I was diagnosed but are beyond
comprehension in this day and age.
And I think of my recent stay at a major medical, world renown hospital that has a fantastic reputation for T1D. It’s why I chose to have my surgery at that facility – I wanted a vacation from D, and figured that was a safe place to take one. Boy was I wrong! None of the T1 expertise has made it from the medical floors to the surgical floors, and I had to fight tooth and nail to keep my pump and be able to use it for boluses instead of the sliding scale they were so familiar with.
They wanted to give me 8 units for a sugar in the lower 200s. I over-rode them and “compromised” at 3, only to crash a little while later. When I was still NPO following surgery, my sugar dipped to 59, during the night when my insulin sensitivity is tremendous. The nurse gave me a choice: a shot (glucagon, yes, when I was fully conscious) or D-50 into my central line. I chose the latter and asked her incredulously why she was giving me the whole thing. Her answer: it’s protocol.
Then she proceeded to demand my pump until my discharge, several days in the future. I refused and demanded the CDE come visit in the morning, explaining that I was having trouble wrapping my head around their expectation that I should stop a modern treatment that mimics the body and switch to a modality that has been obsolete in the T1 world since the 80s. A sliding scale – with no consideration to carbohydrate intake, metabolism, stress, etc. Rather than surfing, she thought I would heal faster by chasing the numbers.
But when the sugary sweet voice slowly said, “Now honey, do you remember when I told you that you had major surgery? When you come into the hospital, you have to be willing to be vulnerable and let other people make decisions for you.” Really? When we (with T1D) allow ourselves to be vulnerable with the wrong people, we can easily die. (That was the last time she set foot in my room). I did a lot of educating that week...of nurses, social workers and yes, physicians.
How I wish that Sugar Surfing could be mandatory reading for every nurse and doctor of every hospital. Hospitals would be a lot less scary for us!!