At last. I have a new neuro. Henceforth referred to as The Newro. Of course, I don’t currently need one. An irony not lost on me this morning!
I am still full of the new-doc-jitters that some of you know all too well from first hand experience. You’re not sure how much info to take with you. You’re not sure if they will like you enough to want to help you. You’re not sure if you will be the tenth in their clinic, or the culmination of a very bad week. You do know they will be time poor, that goes with the territory. You know they will be very very smart. And that makes you a little trepidatious, because so few of the very very smart ones have social expertise. You steel yourself to answer all the questions without being extraneous or verbose. You hope that you’ll just be able to converse. Like humans. You decide your plan is to just turn up and talk about things, because that seems the most sensible thing to do.
In addition to these new-doc-nerves, I feel a strange sense of illegitimacy. It feels profoundly odd to be heading into The Newro’s rooms when I am feeling so well. I doubt if he has any well patients at all. But if I don’t take this outpatient appointment with him, introduce myself and explain why I am hoping he’ll take me on, I may find myself sick again and without a neurologist. In our public system, that will mean a long delay before I am on the neurology outpatient books again. I guess I am insuring myself against possible relapse, getting my ducks a row. I was first recommended this neurologist over a year ago, when we paid to see a private Rheumatologist, so we could rule some things out. He felt I needed a Neurologist who had an interest. And he knew one he thought would be a good fit. Then six months after that, my neuro-immunologist asked me if I had a neurologist I would like to be referred to. I remembered the name of The Newro and the referral went in. So it’s been a convoluted journey.
I’m secretly hopeful he might have a fresh perspective on things and might be able to shed some light on why I have responded so beautifully to high dose steroids when it doesn’t seem to do the same for all Dysautonomia sufferers. My immunologist and neuro-immunologist are at a loss about that. And I wonder if he has some theories about cause, and some ideas of what we should do if it all comes crashing down again.
I’ll write some more after the appointment. Right now, I’m off to my girl’s school assembly. She’s in line for a certificate and I want to wave at her and see that shining face grinning back. I’ll be walking to school, up the hill. I won’t take half an hour to do it, like I used to, with sitting stops staged along the way. I won’t need time to gather myself before the other parents arrive. I’ll leave with five minutes to spare, plonk myself down beside one of the mums I know, smile and chat and be the ‘normal’ person I am becoming. After that, it will be straight out to do chores before picking up the hubster on the way to the hospital. Me at the wheel. (Did I tell you I have new wheels? So exciting! Even more so because we didn’t have to buy something mobility compatible. We just bought a used car straight off the lot. It was lovely). So many things in one day. I remember how doing one thing in one day was sometimes too much. I’ve come a long way.
I will try to be mindful, today especially, of how it was before. I want the Newro to understand how vastly different things are to how they were. I want him to offer to help me if I start to slide back there. I hope it will go okay. Fingers crossed.