Today's #DBlogWeek prompt: Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What's your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!
After having Type 1 Diabetes for going on 18 years I have gathered a variety of healthcare experiences. When I was diagnosed at age 11 I had more than enough doting endocrinologists, nurses, diabetes educators and nutritionists. Everyone lent a hand to guide my parents and I through this new, admittedly scary, world of carbohydrate counting, finger sticks and insulin shots. We shared logbooks, nutrition guides and skin (yes, the diabetes educators would let us practice giving them shots). I remember feeling incredibly safe while I was at the doctor - like diabetes was just a side story to a gathering of friends. They all knew my name, and my parents' names, they had children and my mom made them quilts, we shared stories about going to concerts and made plans for my international trips. April, the nutritionist (yes, we had the same name), even helped my dad figure out how to eat better and lower his high cholesterol naturally. I mean these were quality people.
Then I moved to Huntsville and my endocrinologist situation changed dramatically. Without dwelling on the negative I will just say that I no longer felt that the endocrinologist office was a safe place. I felt judged, alienated, and nameless. I was out of place - the office mostly handled Type 2 cases and, in my opinion, the diabetes educators learned more from me than I ever learned from them. I literally left every appointment in tears - not because I was doing anything wrong but because it was such a dramatic shift in care. I knew this situation had to change.
Chris helped me find a new endocrinologist about an hour and a half away in Nashville at Vanderbilt. I knew at our first meeting that she was different, in a good way. It was like a throwback to my pediatric endo. She asked lots of questions and took lots of handwritten notes. We made reachable goals and she made me feel safe again - it was like we were fighting the diabetes dragon together instead of me awkwardly shooting lancets at him while a mean old coach gives me advice from the sidelines. When we decided to move to Houston I was ecstatic to work for NASA, but heartbroken to leave my Vanderbilt endo.
Now I am here in Houston basically back to square one. It's been three years and I have tried about a half dozen endos with no luck. I am constantly re-explaining how I use an insulin pump and CGM together and how I feel comfortable making adjustments on my own. Last time I even corrected an interim endo (the endo I have been seeing was due the day after me and still on maternity leave) regarding the insulin sensitivity factor programmed in my pump. Decreasing the number increases the amount of insulin administered not vice versa. He seemed surprised that I actually understood these equations.
Honestly, I'm just burnt out on meeting new endos and being let down every time.
So....healthcare, yeah. It is so hit or miss.
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