I get it. We are all human. When I was practicing as an RN, I’d mess up and say occasional dumb things. It happens. But today’s comment was incredible: shocking, hurtful and telling. I’ve been processing it for 2 days.
My neuro has a really great reputation in Austin. And I’ve been able to get innovative and good care for chronic migraine. Mostly the PA Mariah is my provider. She is actually a chronic migraineur herself, so she has an invaluable perspective. I’ve been her patient for 5 years, seeing her 6-12 x a year. And we’ve talked a lot. She is on botox treatment and has been through many of the preventative medications; she hasn’t mentioned if she’s tried CGRP yet but when I told her the Emgality was causing some issues with my hormones/thyroid numbers (my estrogen is 0… meaning my body is no longer absorbing the estrogen patch, where it used to. And my thyroid numbers are slightly high, meaning my body isn’t absorbing the levothyroxine, where it used to), she told me it simply wasn’t possible the Emgality was the cause, since it had no mechanism of action to do that. Whatever Mariah. I started Emgality and my body went whack hormonally… there were no other changes I’d made. Take it or leave it. I know it was the drug. And Emgality did not help my migraines.
Anyway, Mariah has changed my diagnosis a bit, so I’m getting more botox (the ONE helpful preventative medication for me!). And that’s swell. I get 40 injections in my neck, shoulders, temples, occipital area, forehead and jaw. Omg the jaw. So, so helpful. 2 days later and I’m beginning to feel a bit of relief. We’ve been having horrendous thunderstorms for 3 days too. My barometric fluctuation trigger is triggering away.
Anyway, all went as usual with the botox jabs and Mariah and I chatted while I sat there still in my chair and she worked. She looked lovely this day: smiling in her scrubs, her cute, funky glasses on, her long auburn beach wave curl locks – really lovely. Since I was migraining and having a particularly difficult time with aphasia, I became exasperated at one point, “I just can’t get my words out!” And then Donna nervous laugh. “That’s ok,” Mariah said, “you can just relax; I understand.” That was nice of her.
After the injections, I asked her a few questions about botox that a migraineur on the boards had mentioned.
That’s when Mariah brought up her new treatment. Apparently, she recently had an 18 day migraine that just would NOT break. “You name it, I tried it,” she said, referring to every medication the practice uses to break status migrainosus. In the back of my mind I could hear Mariah’s past lectures to me: “If it lasts more than 3 days, it simply is NOT a migraine. That isn’t possible. At that point, it’s got to be rebound or medication overuse.”
Hmmm. Mariah experienced an 18 day migraine? I thought those were not possible? I kept my mouth shut and continued to listen to her, with great interest. I could tell there would be some valuable information in this story.
She said she tried Craniosacral Therapy then. The first few minutes the practitioner had her hands on her, Mariah thought: This is hokey. “But then, Donna,” Mariah said excitedly, “all of the sudden – the migraine just BROKE!” And Mariah has been continuing craniosacral therapy since, and has found it very helpful (she also discussed with detail how the practitioner could see the misalignment of Mariah’s face before therapy).
I was very happy for Mariah. I can understand the gigantic drain of an 18 day migraine and working (see Donna’s life 2009-2012). I said soothing and encouraging things to Mariah (although I don’t believe she has children to care for as well). I also started to tell her about how I had done craniosacral therapy a few years ago (didn’t help me but was relaxing). But she had to cut me off.
Mariah was off to another task and starting out the door (I understand this… they are SO busy!). She closed her story with: “It’s been really, really helpful and you know me, I believe medicines are what helps migraines. I mean, if a patient had come to me and told me craniosacral therapy had really worked so well for them; broken a long migraine, I would have been really skeptical,” Mariah said and she scrunched up her face, feigning disdain and disbelief for this imaginary patient and conversation. “I would have said, ‘Okay, whatever!’ And not really believed it. But I experienced it! It was amazing!
Anyway, bye, have a good day and I’ll see ya soon!” And Mariah left the room and shut the exam room door.
I sat there slack jawed. Had Mariah not heard herself? How could she say that? Does she even hear the words and message she just gave me? My mind was zinging – not only from migraine, but just sheer horrified astonishment. I didn’t move. Just sat there stupid in my chair with my stupid gown on. My brain alerting me something was WRONG; faintly imagining the far off sound of a zany carousel music score… Circus Town had just happened in my neuro office at my botox appointment. My migraine caregiver just blurted out unapologetically that if a patient came to her with information about a therapy that helped, she wouldn’t give it credence because it wasn’t her taste of “medical.”
What the hell?
I started to take off my gown and dress but I was really shaken – not just from this humdinger migraine buzzing in my brain and veins, making me weak, confused, lethargic – but also this brush with my medical care harsh reality.
I was so out of it I almost threw the gown into the garbage, rather than the hamper.
This place… this office where their job is to provide the best medical care for my neurologic disorder… this place isn’t “safe.” They don’t trust what I say. They don’t believe me. I can talk to them about my experiences and symptoms and ailments, but they doubt me. They belittle me. They don’t really connect or even try to connect with me… and I come to them seeking help and care. They devalue my words and are skeptical about my situation.
Now, to be clear, I’ve felt this in the past at my neuro’s office. I have. Like I mentioned, Mariah has told me that if I’m experiencing a migraine more than 3 days, I’m basically wrong. It’s not a migraine. She’s imparted this information with great authority, leaving no room for dissent or conversation. But she’s also had moments of caring. “This is a bad phase, Donna,” she’s said, while I sat vulnerable in front of her, “just a bad phase… it won’t be the rest of your life. We’ll get through it.”
And that was kind. Many times I’ve cried my eyes out with Mariah, over the disintegration of my functionality, or a couple times when she trialed me on a medication for migraine prevention that resulted in an eruption of full blown depression or fits of uncontrollable rage. (Those were some fun times) Mariah is a good person. She’s a capable practitioner. She’s pretty darn smart.
But… she just kind of admitted… she doesn’t believe me.