too much to ask for?

I had my follow-up appointment with the gastroenterologist today. It did not go very well. Not so much because of G.I. stuff, but because after telling me that my scopes and bloodwork and other lab tests were fine (with the exception of some fundic polyps in my stomach, most likely the result of long-term PPI use), she went on to discuss the endocrine approach and how that was going.

animated diagram of head showing colors for progressing migraine pain

Progression of headache right side...should animate if you open in a new window

How that is going is I keep trying to do a caffeine fast to do a 24 hour collection to rule out or not carcinoid, and failing due to migraines. This weekend, a blistering headache woke me up in the very wee hours of the morning. I went back to sleep, and woke up several hours later with exactly the same headache. On Monday evening, I had what is sometimes called a “silent migraine” – that is everything but the pain. That lasted through Tuesday…all day Tuesday. Wednesday was marginally better, but I really think only because I clobbered the hell out of it with my migraine meds at the very first twinkling sign of a migraine. This is typical. This is my brain, my vascular system, my particularly problematic physiology. One term for this is “chronic daily headache”.

And so the most recent caffeine fast ended. Oh did I mention that my migraine medication has caffeine in it? I’m not sure if I mentioned it here but you know who I did mention it to? The endocrine fellow. And today I “re-mentioned” it to the gastroenterologist. “You really need to try to do that,” she said.

Let’s back up.  I had gotten to the GI appointment early, but not too early.  Early enough to wander through the B.A.T.H. at my usual snail’s pace, find the atrium that’s down the hall from the GI clinic, and call my primary care’s office to (a) return the call they made to me this AM about (re)scheduling an appointment for a suddenly and acutely sore right wrist (using dictation software again…good thing I have it) and (b) ask again about the workplace accommodation forms I dropped off a month ago.  Two calls and not much progress with them later, I tucked away my phone and ambled down to the gastroenterology clinic. There, I waited I waited and waited and waited… Got checked in, filled out paperwork (with sore wrist on dominant hand, started at work Monday, can’t see primary until next Monday), and waited. After about a half an hour I was called in back. Where I waited some more. All total, about an hour of waiting.

I believe that all of this is important for understanding the mood that I was in when the gastroenterologist “reminded” me to do that 24-hour urine collection for endocrinology. After I explained to her the problems I was having with the caffeine, she made the mistake of saying that maybe we didn’t really need to do it. “I mean if you had that you have really bad flushing and profuse watery diarrhea…” “Yup! That’s me. That’s what I’ve got. That’s why we’re doing it,”. It was at this point that I found myself having a difficult time controlling my emotions, or rather controlling my emotional display. “When you really should do it,” she said.  I tell her I had done a 24-hour urine collection for my primary care, and that collection had yielded an elevated Chromogranin A level which the endocrinologists dismissed. I tell her why bother putting myself through the headaches of caffeine

animated diagram of head with colors mapping progression of migraine pain

Progression of headache left side...should animate if you open in a new window

withdrawal which I can’t treat with my headache medication because it also has caffeine in it to do another 24-hour urine collection, the results of which the endocrinologists are just as likely to under interpret as they did the original 24-hour urine collection ordered by my primary care.  We had a brief discussion while I was putting on my coat about whether or not I should try a new endocrinologist. She says yes, I say why bother. She says this is not a good attitude, not the right approach to have, that she understands that I’m frustrated – I interrupt and say I’m not frustrated I’m ground down, I’m eroded. She tells me not all doctors are the same. She tells me some doctors do miss things. She tells me that maybe if I find another endocrinologist and that if they tell me that everything’s okay maybe I’ll believe them.

See she was doing pretty good in the middle there, right up until that “maybe you’ll believe them” part. By doing pretty good what I mean isn’t that she had me convinced that everything would be fine if I try a new doctor. I know more than she does about the subject, the subject specifically being what it feels like to be me in this situation. I mean she was doing pretty good at being nice about a shitty situation that she’d sort of stumbled into (the endocrine fellow’s “well, just TRY” advice when I had told her that I was having a hard time not having caffeine with the headaches wasn’t the GI doc’s fault…she just accidentally stepped in it)

While I was on the train platform waiting to go home, the nurse for my primary care’s office called. She tells me that she gave the doctor the workplace accommodation forms before Thanksgiving but that he hadn’t signed them yet and she didn’t know why. I asked if it would help expedite things or make a difference to know that I was really catching a lot of shit at work right now about some of the things I had hoped the accommodations would help with. She said that everything had looked fine with the forms so she’s just going to tell the doctor that she thinks he should just sign them and send them back to me.

I guess what I’d like, what I would’ve liked, some fucking empathy. I mean some expression of fucking empathy. I don’t think that’s too much to ask for.  There was some from the GI doc, but followed with a little invalidation chaser, which makes it a little hard to feel good, or at least less bad.

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2 Comments

  1. Amen sister. Medicine really screws those of us who aren’t easy to diagnose. I hate the trying new doctors advice. Everyone says it but it’s like the effing lottery. You assume all the risk and work blind for little reward. Most doctors are the same, brought up by a toxic system.

    Me? I want to be super rich and buy myself my own doctor who will do what I want.

    Can you take some time off work to do the caffeine thing? So you don’t have to do anything while you’re in pain?

    M

    Reply
  2. Thanks POP (or should I say MM?). I’ve also fantasized about being super rich and starting a doctor scholarship fund or fellowship in difficult diagnoses. Curriculum would include empathy building exercises and patient/provider communication best practices research. Ah, it’s good to dream. 😉

    I have so little time available at work. The hold up in the accommodation forms is killing me. If they were approved, I could have done this last week. As it is, we are now coming up on my super busy work time and so I can’t. I am thinking of trying it after final exams are over, taking some “work from home days” in there so I can be caffeine deprived at home at least. But this might run me up too close to the follow up appointment…we’ll see what I can do. I’m also thinking of just doing a “low caffeine” diet and we’ll just have to deal with a slightly less controlled test. Not like they’ll treat it like it was controlled anyhow, you know? This group has a tendency to under interpret.

    Reply

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