Before I had diabetes (I was diagnosed late, at 29) I never gave doctors much thought. I had a primary care for semi-annual physicals, saw my gynecologist once/year, dentist twice/year and that was about it. My relationship with my primary care doc was nonexistent – I just didn’t see her often enough. That all changes with a chronic illness. My endocrinologist (along with a CDE & nutritionist) was someone I began seeing at least 4 times/year and we had to work together to improve my diabetes management.
My first endo (you never forget your first!) was awesome. He was a T1 himself, used the omnipod (though I didn’t find that out until I told him I had been looking at pumps and liked the omnipod the most), and pushed me to live up to my own high expectations. He drove me crazy sometimes, but mostly he motivated me to be on top of my diabetes game. He understood how hard it is to deal with basal rates, i:c ratios, excercising & staying active, intimate relationships, and burnout — but lived life to the fullest himself. He was more than an endo for me – he was a mentor. He worked with me to get below a 6.0 A1c so I could get pregnant as safely as possible and always had confidence that I could do anything I set my mind to.
When he left, I considered trying to switch to his new practice even though it would have been about a 2.5 hour drive each way. In the end, I stayed in the practice (with the CDE who was the best “tweaker” I have ever known – also a T1 and on a pump) and switched to the other endo. She was nice, and had a daughter nearly the same age as ours so we had that in common. In some ways, working with her was a break after Endo #1. She was always so impressed with my management “compared to” so many other patients. She might suggest a small change here or there but mostly just left it up to me (and the CDE) whether I wanted to change anything or not. She was also very easy on me over lows. She wasn’t convinced that the science could really show that the same blood sugar level was dangerous in different people. If I felt ok at 55 then who was she to say that it was a problem? More than 5-7 lows in a week (below 60) and she would raise an eyebrow and suggest that I talk to the CDE about making some changes if I wanted.
After time though, I missed the higher expectations and felt disappointed before and after our appointments. I tried to say that I didn’t really care what other people had for A1cs, I only cared to improve my own management but nothing changed. Once the Bear was diagnosed I had my hands so full of her diabetes that my own took a total backseat and my visits to the endo were quick and uneventful. By that time the great CDE had left as well and gone to a practice where I didn’t hear good things about the doc so I didn’t want to follow her. So, for the past couple of years I have just seen the endo either 3 or 4 times/year, made my own changes in between when a pattern got bad enough that I couldn’t just ignore it, and worked hard on the Bear’s pump settings and daily care. My A1cs have still been fine, but I know I have way more lows than I should and that contributes to foggy thinking, fatigue, and potentially dangerous situations.
Last fall, my endo told me she and one of the other endos were both leaving the practice. She was going someplace further away but still very driveable for me (about 30 minutes each way instead of 5). I thought about it, but there was no compelling reason to follow her. I evaluated the other practices within a reasonable distance but they all had a problem (the office staff cancels your appointment when you show up rather than calling first, the doctor is “odd”, the doctor is rigid – his way or the highway, the hospital & practices have been in the news a lot in the past year for avoidable, bad patient outcomes). There was one endo left in my practice (I had only talked to him once when he was on call and I had an emergency) and it took me so long to look at other options, I decided to just keep my appointment with him. That was in November/December and I was pleasantly surprised. He still did a little bit of comparing, but mostly paid attention to what I was saying. We had a real conversation about statins and my reasons for not wanting to go there and I was impressed by his knowledge of the current research and his open mindedness about individual management. He seemed like someone I could work with, and someone who would challenge me a little here and there. I made my follow-up appointment for March and felt pretty good about the whole thing.
Until, I went to get some labs done and the lab tech couldn’t send the results to Endo #3 because he was leaving. What??!!?? That is not the way you want to get that news. I contacted the practice (no answer). I contacted the hospital – oh yes, letters are on the way to all patients. Your satisfaction is important to us, blah, blah, blah. They would be getting an interim endo and they were searching for someone permanent. Again, I thought about changing practices but honestly was discouraged enough (endo burnout?) that I just didn’t do anything at all.
This last week I had my appointment with the locum tenens (fancy medical term for temp doc). I asked at the desk – “how is he? and is he temporary?” and they said that everyone really likes him and that he wants to stay. I then waited for a veeeeeerrrrrrrry long time. Finally the nurse came to get me and said that she was having trouble downloading a meter — not mine — and that’s what took so long. (no comment) She was very cheerful and a little surfacey which didn’t make me less irritated. After another long wait (hello twitter! Thank you @klewing and @kellyrawlings!) the doc came in. He’s youngish (maybe late 30s or early 40s), Indian, professional. He started off by asking me how I was feeling about my diabetes. Ummmm… not that I mind being asked. But it immediately felt too personal in a way. He has no idea who I am, how I have ever felt about my diabetes, what my answer might mean. That’s not at all fair to him – he just met me, he asked me a very good question (not “what is your fasting bg most days” or “what did you do on this day that made your bg so high?”), and I immediately went all porcupine. The whole thing just felt intrusive and judgey. Thank goodness @kellyrawlings tweeted:
“When I feel at odds, I remind myself that endos & other diabetes HCPs willingly “chose” #diabetes & really do care”
The rest of the appointment was better. He saw one after-dinner low and suggested I change my i:c ratio. I said “because of 1 low bg?” He looked a little sheepish and said maybe I could just try it and if my numbers were high I could change it back. So I did that. We talked about lows for a bit – he talked about the impacts on cognitive impact from too many lows. At the end he said he wanted me to meet with the NP for the next appointment – apparently she is very good with pump settings and bg analysis. And, he asked me when the last time was that I saw the nutritionist/CDE. It’s been years so I have an appt to see her as well.
In the end, I decided to just give it a chance. Of course I won’t feel very comfortable with someone I don’t have a relationship with. My diabetes and I have been working together for so long, it is hard to let a stranger in. I like that he suggested me seeing the other people – that says that he does see room for improvement and doesn’t necessarily think he has all the answers. He is taking more of a team approach and I haven’t had that in a long time. I’m still tired of all the change. I miss the comfortable give and take that I think was very beneficial during my first few years after diagnosis. But, I’m taking @kellyrawlings’s comment to heart and going to give this new endo the benefit of the doubt. Now, fingers crossed that he sticks around for a while.