Last night there was an incident during the sportsball game that perfectly captures my experience with the GI yesterday. Justin Turner was up at bat and a pitch was coming right at his face. He avoided it by hurling himself to the ground.
The commentators then explained that he had been hit by a pitch at training camp and that was why he added the protective face cover to his batting helmet. They went on to explain the psychological challenge of having just almost been hit in the face by a ball hurtling towards him at 80+ miles an hour, and then having to recenter himself to be ready to face another pitch in just a matter of a few seconds. And just as they got those words out, the next pitch hit his body. That was my day.
I knew the minute the nurse came in to take my vitals and get my weight that it was all over for me yesterday. I naively thought that once I got my G/J tube and my intake was entirely managed by medical professionals that I would be free from the tyranny of the scale. I was so horribly wrong. And in this case it would bite me in the ass. Hard.
You see, there was a 30lb discrepancy between my scale at home and the scale I stepped on at the doctor’s office yesterday. But it is not as simple as our scale being miscalibrated.
There is something going on with my body size. I have to wear my clothes very loose because my abdomen is so hypersensitive to touch. My favorite pants have a drawstring, and I recently had to tighten the drawstring to keep them up. But I also have, on occasion, what I refer to as bloat, where my lower abdomen gets noticeably bigger and my normally comfortable pants get a bit tighter. Yesterday was one such day. I share this to contextualize how David and I may have missed this weight discrepancy. But even I struggle to fathom toggling 30lbs from day to day. But I have ordered a new scale and we are moving on.
Honestly, I still don’t believe that this should have made a significant difference to the doctor. The fact remains that based on my nutritionist and my GI, I should be on four cartons of my formula a day. I am currently on 1 and 1/3rd and have been for 5 weeks. In my mind, that fact alone should be enough. But yesterday’s GI’s bottom line was that my BMI did not warrant an intervention at this time. I was simply too fat to warrant adequate nutrition.
Both David and I tried to explain how the weeks of malnutrition were noticeably impacting me. But she had not reviewed my records in advance. She had seen them, because she complained that they were sent in hard copy and not electronically. Which is an artifact of Mary having had to painstakingly collect them from a variety of systems, with only a couple being cross-compatible with each other. But that should not be a me problem.
It wasn’t just my weight. The GI came in to the room with an attitude and was not positively disposed towards me from the start. Early on, it became apparent that she thought I was a hypochondriac or doctor shopping or both. She had no interest in my attempts at explaining why I had doctors in Vermont and Stony Brook and Manhattan. In fact, she was more interested in my psychological issues, even asking for the name of my therapist and asking me if she could contact her. That was a huge red flag for me. Who asks to speak to your therapist?
She also questioned my diagnosis of gastroparesis. She asked multiple times why I didn’t have a gastric emptying test. I tried explaining that I had a smart pill test and that it was the industry standard. I decided not to point out that the Mayo Clinic had been confident enough in my diagnosis, but then again, they had read all of my medical records. Also, why ask a patient why she had not had a specific test? Its not like I get to control what tests get ordered.
The most engagement I saw was when the GI asked to look at my tube. She had brought a nurse practitioner into the room with her and was carefully teaching her about my legacy connection and how enfit connectors are better and how mine was a tube within a tube. I took that moment to interject how this was actually my third tube and how I had had a negative experience with an enfit tube. She looked at me like I had interrupted her during a lesson and challenged me about what I meant by two side by side tubes. She then happily went back to explaining my tube to the nurse like it wasn’t attached to a person.
As we neared the end of the exam, she asked outright what my goals were for this appointment. I said, point blank, nutrition. She said that my BMI didn’t warrant intervention at this time, ordered a bunch of labs and told me to come back to see her in a month (but we couldn’t get another appointment with her until October). David tried pleading with her, but no avail.
We had told her that I was seeing my GI in Stony Brook on July 11th and that I had another appointment with a different GI later that month. She said that I was welcome to see as many other GIs as I like, but that they would only give me band aids. She would get at the cause of the issue.
Some of my early labs have come back (I love patient portals) and some of the numbers are off. I am curious to see if she contacts me about them or not. My current GI has a habit of ordering labs and then not closing the loop with me, so I am not holding my breath.
Clearly help is not coming any time soon. And I remain adequately upset by yesterday’s interaction that I feel physically numb. At least, unless I deliberately try to check in with my body. This is my eating disorder in action. It is how I have been able to deliberately starve myself for years. But for once, it has actually proven to be useful. Last night I tried raising my feed from 25ml to 27ml per hour. It is uncomfortable, but tolerable. I was able to sleep until 6 this morning when my psychological distress woke me up. That bought me the time I needed until my pain meds kicked in. So I guess, in the end, she helped me with my nutrition after all.