redefining “specialty”

well rounded wellness

IMG_0871Every now and again, something happens in my life that triggers a memory of my diagnosis. It’s a story every diabetic has. And it’s a story that many of us struggle to revisit. Naturally, it brings back a lot of pain, fear, and emotions that make us want to oh, I donno… maybe throw our pumps out the window never to be seen again.

I was brought to 2005 this time, when I paid a visit to my Endo last Friday.

She has a nice office; very trendy for an Endo. They’re usually trapped in 1992, playing soap operas on off-brand TV’s, and smell like a 3rd grade art classroom (insulin man, it reeks of paint). I typically like this doctor. She’s just…a doctor. We don’t have much of a relationship. She draws my blood, tells me my A1c, and checks my thyroid. We adjust basal rates, and I’m back to work within the hour. Nothing special here at all. But there’s always some point within the visit where I know I could be doing much, much more. That she could offer me much, much more. And together we could learn much, much more. I could be more honest with her, and ask more questions, but instead I’m just more comfortable sitting there and stewing. The whole time I was sitting there, I just wanted to do grab my A1c reading, and ride off into the sunset.

And that’s when my brain flashed back to ’05.

Suddenly I was back and sitting on the side of a hospital bed, fumbling through everything that had been suddenly dropped in my lap with no idea how to understand it.

At age 17, I woke up a sick kid who needed to go to the hospital. It was the strangest day of my life. Until that day, I hadn’t even been to the ER or gotten stitches. That was my brother’s job. The extent of my traumatic medical visits involved sloppy orthodontia experiments. And that one time I sort of faked having bad eyesight so I could get the same glasses as my best friend. That was my track record until that fateful day when one moment I was at lacrosse practice and the next I was someone that would be tethered to tubes and numbers for the rest of her life. People were telling me what was happening, and explaining what it all meant. Additional care. Constant monitoring. Diet restrictions. A reason to be afraid to live my life as I had been living it.

I was now a “specialty” patient.

However, not one doctor treated me like I was special at all. In fact, I was treated like garbaaaaagio when I was first diagnosed. I was pushed around by CDE’s and nutritionists. I was expected to just be super fucking chill with poking myself and sticking a needle into my stomach as if I had done it for 100 years. I felt ashamed about sitting in the bathroom trying to inject myself for the first time and failing over and over again because I was too scared. Not to mention I was an awkward, egotistical 17-year-old being treated in the pediatric ward. I felt like I should have been volunteering and hanging out with all of the little people with cancer, not spending the night in my own room. The guilt I had for taking up the doctor’s time and space was overwhelming. The nicest person I remember throughout the entire thing was the phlebotomist who drew my blood at 12, 3, and 6am, looked like a bald body builder, and had piercings and tattoos on every surface of his body. Bless his heart, he was the gentlest, kindest human being.

After that shit storm, the only thing I knew how to do was freeze. I made a decision during that time that doctors were the worst, and that if no one was going to help me, I wasn’t going to be particularly stoked about being considered “specialty” patient. I could do most of this on my own. All I needed was my friends, my family, and myself.

Some people have unbelievable relationships with their Endos. And after last week’s mindless, transactional visit with a woman who is perfectly kind and knowledgable, just not necessarily my flavor of caregiver, I’ve decided that it’s time for me to care about who my doctors are. Writing this blog and surrounding myself with more people in this amazing community of diabetics is starting to rub off on me. You, yes, you, have helped me feel more empowered about how I deal with this shit instead of resenting it like the angsty teenager I was until I was 27 1/2 years old. I half-ass tried Joslin, I half-ass tried Mass General, and I half-assed a ZocDoc lady. I’m ready to full-ass now.

The new goal is to befriend an Endo. It seems simple, really. But clearly, it isn’t. I need someone who doesn’t belittle my questions or fears or who tells me more than”just set a temp basel for a few hours to get the kinks out” because that isn’t always the answer to everything. I’m ready to be a “specialty” patient that actually feels special.

Annnnnd if anyone has any amazing endo reccos in NYC, holler at your girl!

 

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6 thoughts on “redefining “specialty”

  1. Dr. Jeanine Albu is a great doctor, and works closely with two CDEs that I get along with really well and consult about the more minute details of basal/bolus rates, reading & interpreting my CGM graphs, talking about the pros and cons of different pumps and supplies, etc.

    Liked by 1 person

    1. I should mention–I’ve cried in her office many a time (when diabetes feels overwhelming, when life is keeping me from taking proper care of myself, when my A1C is higher than I expected) and she and her staff are always incredibly kind and supportive!

      Liked by 1 person

  2. It’s so hard to go in there and feel comfortable to share with someone you don’t get to spend a lot of time with. I never got to see the same endo when I was first diagnosed at the same age you were. It wasn’t until I transitioned into adult care that I found an endo I was comfortable with. Hope you do find someone you can trust.

    Like

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