I’m Just The Patient

Today was my big appointment with the movement disorder neurologist at the U of Minnesota, and it was decidedly anti-climactic. My first impression was that he was a young version of Derek Jacobi, pictured here:
Derek Jacobi
All of the doctors seemed to be excited that I was scheduled to see this particular one and told me repeatedly how thorough he was. In fact, I was supposed to see him over a month ago, but he looked over my file a few days before I was due in and instead insisted I get my face tased (with an EMG) before seeing me, which pushed my appointment back so that he could rule out myasthenia gravis (a second time). I knew I didn’t have it as of 2010 and I still don’t.

This doctor was short on bedside manner, so I immediately shortened my answers and didn’t elaborate on anything. We went over my family’s extensive history of autoimmune diseases. He made me walk and do things with my eyes closed to deliberately make me fall (which made me sweat and because I was under so much stress, the tremors started up almost immediately). He shook my shoulders, sending white hot pain through my left shoulder that I’ve been going through PT for but am going to get an MRI for after next Friday because I’m not healing – I spent three years laying on that shoulder because all of my surgeries were done on the right side for that length of time, and the pressure really messed up the tendons and ligaments.

After all of that, the doctor told me that his nurse gave me the website in December that I should have checked out on movement disorders. He must have seen my eyes glaze over and the stubborn set in my chin because he left the room and returned with screenshots of the website. I politely folded them into squares and stuffed them into a pocket in my purse. He said that a doctor from July of 2015 believed that I have a facial movement disorder. I told him it was news to me, since the only thing that was said to my face was that I wasn’t a good candidate to have surgery to relieve the pressure on my optic nerves. This doctor said that the other doctor may have chosen not to tell me that I have a movement disorder because there’s “nothing that can be done about it anyway.”

This entire conversation is deeply flawed. First, I don’t have a facial movement disorder. I have a problem with CSF pooling in my cranium while I’m upright and it presses on some of the nerves leading to my face as well as my cerebellum; as soon as I lay flat, the fluid moves away from the area and I get full functionality back. Second, I have plenty of issues in which “nothing can be done” for them – including alopecia universalis, though he was quick to point out that someone was doing a study. I told him that it was low on my list of priorities. Third, I’m the motherfucking patient. Doesn’t it stand to reason that if this is one or more of the thought process of the doctors that it should be discussed with me?

When it was time to go home, the cab driver that got the dispatch to take me home pretended to come and pick me up but then acted like I didn’t show up – even though I was outside sitting on a bench in between approaching every cab that rolled up asking if they were there to pick me up, so it took me an extra hour to get home after I had to call dispatch to bitch.

I really could have just stayed home.

In fact, I would have benefited from a day in bed. I predicted that I would be laid out for a good week after last Saturday, but I think that it was an accurate call. Now that I have an honest to goodness boyfriend, we’ve been trying to do activities that I can actually handle for a few hours. There was a flea market/antiques expo at the state fairgrounds and I thought we could just take the bus because it stops right outside my building and seemed to spit us out right at the fairgrounds gate. I was not a good planner for this trip and we ended up doing a lot more walking than we thought – and it wasn’t like we had a choice, no one could do the walking for us. My phone tracks my walking automatically and I wasn’t surprised when I saw 2.5 miles for the day rather than my usual high of 0.5 miles. By the time I climbed the steps to my building, I was visibly shaking and was fighting fatigue tears.

But damn, this boyfriend rocks. The Saint Paul is loving and affectionate, and goes on food runs and lets me stay behind so I don’t have to get out of bed. I have begun meeting his family and friends, and he is in the process of meeting my people.

Most importantly, we have said the “L” word, and meant it, and will continue to say it. When someone great comes along, you absolutely can’t take for granted that they just automatically know how much they mean to you or how much you appreciate them. I’m infinitely grateful to the universe for nudging me in his direction.

And then there were two.

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13 thoughts on “I’m Just The Patient

      • Unfortunately I’ve had a good amount of female doctors who have become hardened to seeing patients suffering too. I know it has been largely because of the shift in how the business of medicine is being handled compared to when I was a child 30+ years ago. We’ve exchanged the lifting of pre-existing condition bans for a soul-less, robotic routines and cramming in as many patients as possible to make up for reduced rates negotiated by insurance contracts. No one wins.

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  1. I’ve had some doozy doctor appointments. When I went to John Hopkins, it was told the doctor spent longer with vertigo patient so it took longer to schedule. He allows 2 hours. Great. I’m riding 7hours to see him. Well, he spent, no where near that amount of time with me. It didn’t bother me at first because he was the first doctor to really have any plan. But later I looked back on it and thought. He didn’t know enough to give that plan. He didn’t ask enough questions and I know he didn’t read all my information because of other things he asked.
    Tell me why do we have to fill out these long questionnaires when no one reads them????
    it’s almost better I think to leave knowing it was a waste of time..and the doctor was not worth it, than to leave feeling hopeful only to realize later that this doctor didn’t spend enough time to really make an informed decision.

    So…I hate you have had this horrible doctor. (there are some good ones, shame it we have to be surprised when we find one)

    but so happy for your feeling the “L”word and having it reciprocated.
    best to you both.

    Liked by 1 person

    • I am glad you relayed this story about Johns Hopkins, particularly because for a brief period of time I was petitioning to be seen there since Mayo wouldn’t see me. You always hope that the big name places have a handle on mitigating ineptitude and then you realize that they are just as guilty of it as any other practice, whether there are 2 or 200 physicians. Tomorrow starts another day of fighting. Wishing you all good things, blog sister.

      Liked by 1 person

      • John Hopkins wasn’t a bad experience. The Dr may have spent less time with me because I was so bad off that day. It’s not like Mayo though. I filled out a ton of paperwork and feel like I only saw one Dr and well, it wasn’t enough. I think it could have been good if I could have been a regular patient or if I had a Dr at home for them to work with. That’s what they prefer to do with out of towners. Work with local drs so you don’t have to come back. Well the Dr’s here didn’t want anything to do with it. It was just a mess for me. I’m still an open patient at JH so I can go back. And the dr there is still willing to confer with a Dr here. But they have to agree and I haven’t found one that agrees with the JH dr. But how much of that is arrogance? Don’t give up the fight! And as the JH dr said, Never give up hope.

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