Wednesday, March 27, 2013

The Shaft

Special thanks to Kelly at Diabetesaliciousness for the idea for sharing these thoughts.

I was diagnosed at age 10 and was under the loving care of Children's Medical Center of Dallas for my pediatric endocrine care. At every 3 month "clinic" visit, we saw a dietitian, a CDE, a social worker, and my endocrinologist.

When I turned 18, one month into my senior year of high school, Dr PediatricEndo said, "I'll go ahead and see you until you graduate from high school." When I graduated from high school, he said "I'm retiring in August. I'll go ahead and see you until you leave for college." I think he would have looked after me forever.

My parents loved our team at Children's. We had never seen my A1c below 10%, and there is a lot, looking back, that we were ignorant about, but we had FELT so supported.

Enter adulthood.

It was like stepping into an empty elevator shaft.

I showed up for my first adult endocrinology appointment with my mom, of course. She had always been at appointments with me. She and Dad were still paying my medical bills. She wanted to thoroughly vet this new doctor. She had done her research and he had come highly recommended.

From the moment they met, I could tell my new endo completely resented her presence there. He told me later that he felt she played interference between him and me. He didn't like the way she butted in. I was between a rock and a hard place.

From the first appointment, he questioned everything I'd been taught. Demanded I go on a pump (What's a pump? And no.) because all his patients pumped. He would often berate me for my diet log ("I wish I could eat brownies everyday.") For the record, they were 32g snackwells low fat brownies for my nighttime snack my freshman year of college, perfectly allowed for my carb counting plan. And he called me....dundundunnnn...non-compliant.

I couldn't have been more confused or more deflated.

I treated lows with juice. His CDE said juice was concentrated and a bad choice and I should know better. I was used to being praised for my tidy, color-coded blood sugar logging and my logs had been passed around the office at Children's. Now it was more about the actual BG values and they were horrified.


That same year, not six months later, my opthalmologist told me I was suffering from significant retinal bleeding and had borderline glaucoma and borderline retinopathy.

Throughout college, I would return from my appointments in tears, angry, throwing things. I'll never forget my friend David's dartboard in his room. I unleashed a lot of fury on that dartboard (and his dorm room wall because I have no aim). I don't think I had ever been so angry.

I couldn't please Dr. AdultEndo. I squirmed in my seat, I asked my mom to stop coming. I started facing him alone. I tried to show off what all I was achieving in college. (Hey, look at this website where I started my own voice studio!). I started a pump for him after two years of hounding. My A1c hovered in the high 9s and 10s still.

I invited him to my voice recital my junior year. He came and seemed really enthusiastic. "Where's your pump?" he asked me afterward. Um, I took it off and left it in the green room so it wouldn't be obvious. "Oh."

Every time I had done poorly, it was "time to see the CDE." Like a reconditioning visit.

My senior year of college, he remarked about my weight. "You know you don't have to get fat to become an opera singer." I returned to campus dejected. One of my vocal coaches (a type 2 patient of his), asked me how my diabetes was going one day and I told him what the doctor had said. He didn't seem particularly taken aback, an elderly Jewish composer who had studied with Bernstein and was intimidating and whom I very much admired, but he told me he was sorry that the doctor had said that and we went on about our work.

At my next appointment, Dr. AdultEndo came in and sat down. "It seems I owe you an apology," he said. I am sure my face betrayed my surprise. "Your professor was in here for an appointment the other day..." What followed was delivered with much humility. It seems that my coach, without ever telling me, had given the man an earful and reduced him to shame.

I'll never forget that.

Later that year, my adult friend in the music department office told me that she had switched from Dr. AdultEndo to Dr. M and that she seemed so much more positive than our doc. Dr. M told her that she could someday get pregnant; Dr. AdultEndo had told her it would never be an option.

So I had pregnancy on my mind when I switched to Dr M. six years before my first child was born. Two years before I met Hubster.

By the time I got to Dr M at the age of 24, I was a wreck. My A1c was in the high 8s. I still didn't consider myself non-compliant because I still tried so hard. I just had no idea what I was doing wrong.

She explained things like HOW you reduce an A1c. She said I could get pregnant someday (but that if I did it right then, she'd throw me in the hospital for nine months). When I reached the pregnancy range, she personally called me to give me the green light. "Congratulations. Call me when you're pregnant."

Dr. M drew a hard line on the important things, but she was also gentle and positive and very intelligent. She offered me a fresh start.

I wasted so many years in freefall. Waiting for the elevator doors to open. Waiting for Dr. AdultEndo to recognize what I didn't understand about diabetes and how we could address it. Waiting for him to see where I was and what could be done about it rather than deliver disappointed jabs.

I know I could have been a better patient for Dr. AdultEndo. I know he cared about me. I will always remember his face in the audience as I performed on stage and wonder what he was thinking. But he was from Planet WhyCan'tYouGetThis and I was on a comet moving so quickly and burning so hot that I couldn't meet him there.

I don't know what my early 20s would have been like had I had a smoother transition between pediatric and adult care with chronic disease management. It would have been nice to board that elevator with an operator who could show me around the next floor.

I don't need further research to tell me that the way we do it now is lacking.
Melissa, junior year of college, MM pump on hip


  1. Powerful post, Melissa.

    It's a bit scary how much gravity our docs words and actions, and sometimes even just attitudes, carry.

  2. Thank you for this post! This is EXACTLY why I'm writing my book (pssst, we should talk) and why I want to become a CDE. I know I can't become an endo, but hopefully as a CDE I can help mediate some of these awkward transitions. :)

  3. This made me sad.
    But I cheered! at the apology.
    Words do hurt.
    I'm glad you found an endo who trusted you and taught you.

  4. I have only been a diabetic for 1 year and realize how truly blessed I am to have a great endo from the start! Yes, they really do make all the difference in the world. She spends at least 30 minutes with me at each appt, more if I need it. I am glad that you found someone to help you through this, not punish you!

  5. Great post! And very glad to encourage the conversation about this incredibly important subject!

  6. Glad to read that you found Dr. M! Sometimes, a bad or insensitive endo can make a person cynical towards the concept of doctors, and possible even towards care for their diabetes overall. These kinds of "It's not me, it's you" stories are a real encouragement. Thanks!

  7. I was diagnosed at the age of seven. I can relate to your blog in so many ways. I, too, had an excellent team of Endo's during my childhood. It has been difficult to work with some newer Endo's. I blatantly told my Endo, "Thank you for your opinion. I have had diabetes longer than you've been a doctor. I can switch insulin types and know exactly how it will affect my body without error. I understand you want to see tighter control, but living with diabetes is different than talking about taking care of it."