Ok so I have Bob. But Bob is a just a general term, there are many different types of Bob. There's
Postural Orthostatic Tachycardia Syndrome (POTS),
Neurocardiogenic Syncope (NCS), and
Orthostatic Intolerance (OI), just to name a few.
But what do do you do when you don't have a sub-type? I'm too odd to fit into any specific sub-type. Over the last couple of years I've been told I have a variety of sub-types including NCS and OI and most recently I was told to consider Pure Autonomic Failure as a real possibility. Woo Hoo! It just gets better and better. I did start with absolutely no idea just a group of weird symptoms that no doctor could understand, so I guess that's progress?
Currently I am living with the horse with no name.
Each time it's been like trying to squish a round peg into a square hole (though in my case I may be more akin to a dodecahedron peg). I've never really fit in anywhere. My symptoms are odd. Well to be honest I've always been a little left of centre, Bob is just the latest instalment. My prof tells me that he has seen only 1 or 2 patients in his entire career with my symptoms. Again I use the words Woo Hoo! I'll admit it can be just a little disconcerting when your cardiologist can't find your pulse. I'm sure I have one, it would be rather hard to write this blog if I really had no pulse. I like to think that makes me "Special" (yes I am deluding myself and am living in the world of denial, but hey whatever works right!).
This is one of the reasons I named it Bob. No one else can give me a name so I'll take back a little bit of my power and name it myself. It's rather hard to be intimidated by something named Bob. Bob is a bald, middle-aged accounts manger from Balwyn, who likes watching Antiques Roadshow and playing scrabble online. I can deal with Bob!
So I am officially a FREAK!!! (Not that that is any surprise to my family and friends). I'm off to have some more delightful tests to see if they can decided exactly what type of freak I am. Who knows maybe I'll get a new name I'll let you know.
Michelle aka "the FREAK".
Tuesday, 21 July 2009
The Horse with no Name
Posted by Michelle Roger at 09:50
All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx
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Umm, I may also have a friend name Bob. I have NCS and OI. Hell, they don't what else because no one around my area knows how to treat this. I so love your ways with words and you seemed to express what so many of can't do. Many warms/cool ( which ever you may need at the time)Hugs,ReplyDelete