Yes, ’tis true! The only “bad” thing is that I may have had a nocturnal seizure last night.  I don’t know.  And yes, I told Non-Arsey Neuro about it.  Something’s wrong.  My legs are sore, I’m pretty slow, and spaced out, my eyes are quite light sensitive, and I am unbelievably barfy.  Can we say post-“ick”tal?© Either that, or I pulled out my good old REM joke with him (i.e. I told him my REM cycle wasn’t working, and I was dreaming of running the Boston Marathon.)  Let’s see if I can even write this before falling over, or slipping into some sort of catatonic state.  I’d better not.  I don’t want to spill what little gingerale I have left in the house!

So, let’s get back to the good stuff.  And there are some funnies.  I mean, we were both laughing at points.  Laughing during a first consult? That’s quite a thing, you have to admit.  God, I never laughed with Arsey Neuro!

To begin, and to reinforce my desire for a “collaborative relationship,” when I first saw him, I shook hand, and said it was a pleasure to meet him.  Then I said, “I trust you received my letter?” He replied, “Yes…the Asperger’s…” HA! PA hit a home run with the Asperger’s? Well, off to a good start already? He knows I’m a spaz?

If you don’t know about “the letter,” I wrote it before the appt., and sent it to him to, yes, state my wishes for the same type of “working relationships” that I have with the rest of my medical team.  I brought the Asperger’s into it, in case I sounded somewhat “blunt.”

He did not have a problem at all regarding the seven page document detailing all of the wackiness that my brain has done in relation to the seizure types, increases, frequencies, durations, the parts of the brain I felt relevant to certain presentations…blah, blah, blah…  No, he was skimming it as we talked, and didn’t give me any indication that he was going to throw it into the trash.  Also, we talked directly about portions of it.  W00t! PA hits another home run with her geeky research!

So, on to some of the funnies? Where we were both laughing? Oh, I will mention one thing while he was doing some standard, neurological examinations.  Light in my eyes, peripheral vision, reflexes, what I like to call “the tuning fork,” as it is pressed to your arms and legs to see if you can feel slight vibrations.  Then, one that is almost like a Neuro’s version of a Sobriety Test.  Reach out with your finger, touch his hand, and then bring it back to touch your nose.  He said I was a bit shaky through it all.  I just said, “Yes.”

Now, a funny happened there.  Of course I had to take off my glasses for him to look into my eyes.  He had taken of his.  He said your eyesight is pretty bad (i.e. pretty strong prescription.)  Again, “Yes.”  When I went to put mine back on, I was all out of it, spastic and fumbly, I grabbed his! BWAH-HA-HA!!! I said, “Oh, bad eyesight for sure!” Then he laughed and said,”Oh! I need those!”

When I was leaving, there was one of those silly posters on the wall with whatever, relevant, anatomical picture and then the name of a drug–poster courtesy of Big Pharma.  I was happily looking at the brain, and the drug on the poster was for one of my seizure adjuncts: Clobazam/Frisium.  Non-Arsey Neuro almost started giggling and said, “Oh, I see you looking! See, see?” as he pointed to the name of the drug! I started laughing too.  This is an older guy, as well.  Probably someone’s awesome grandfather!

What else? Well, he was keen re: my iPod.  I had taken all of my gear off for his examinations so I’m getting dressed again and he said, “Getting all wired up?” I responded and said, “Yep.  And hey, who knows? These things could all be Phonatory!” Phonatory, meaning my seizures are being caused by sound.  He laughed at that as well.

Oh! Earlier I was getting all excited, and told him I wanted a fMRI! I wanted all the cool, pretty colours! He was laughing at that, and me too, I guess.  Ah…as well, we were laughing at me talking about my Topamax/Topiramate, and how you’d have to fight me until the end to take it away from me! He said, “Yes! Get out the guns, huh?” *PA shakes head*

So, to tie things up, we are totally in agreement with everything about me.  For now, we are just going to wait until my VEEG is done.  We both think they won’t find diddly! *laughing*

We both think that so many bloody things cause seizures so who the hell knows.  We both think that my meds are just fine.  We both think that my brain is so ridiculously complicated, who the hell knows with that as well!

And we both agree that Epilepsy is just Epilepsy and nobody can really know anything for sure so WTF! Even in specific cases, there is still a whole whack of WTF-ness!!!

All of that being said, who knows what my future will be.  I will or may just have to live with it–like so many other people with Epilepsy do.  Which I think is a fairly obvious statement.  I do not expect my seizures to simply vanish into thin air one day.  That would be nice, however, I think rather unrealistic.

That might sound terribly unproductive for a medical appt., but it really is just fact.  Nonetheless, I think it was extremely productive because he’s not an Arse!!! No, he’s funny and seems like he actually “gets it,” and cares.  Whew!

EDIT: Still feeling nauseous, cognitively impaired and rather tired the next day, so possible seizure? OMG, barfy again! Not fair! I want a new brain! Or at least some major repairs done on this one!

*PA still staring at screen for ages after only writing this small entry*

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  1. findingmecrazy

    I agree, I think that was an extremely productive appointment because he listened to you and agreed with you, I think it’s always great when you have a good relationship with doctors and health professionals.

    I’m glad it went well and well done for writing stuff out and sending it to him to read. I’ve often thought about writing stuff down for my doctor – mainly because I get nervous and useless when I get in there and I mostly mumble and stare at the floor. And I hope you recover from your possible nocturnal seizure! Take care x

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  2. Hi findingmecrazy. Thanks. You know, even if it’s an appt. that isn’t so complicated etc… I still write lists. It seems I’m always forgetting something. I have to make lists for everything! So maybe you should, too?

    Thanks as well about this weird, Nocturnal Seizure business! The irony. Seize the night before your appt. with your Neuro!

    I’ll have a clearer picture and some confirmation if I’m still feeling rough tomorrow.

    Thanks and you take care too, hon’.

    x

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  3. good heavens, there is a God! most doctors suck in these areas… he sounds like a keeper :)

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  4. Hey Margo, good to see you. You’re funny.

    Well, I tend to think most doctors suck overall. You won’t believe how long it’s taken me to “assemble” my team. It probably has taken some luck as well as the hard work. Actually yes, considering what I have just written below.

    I interviewed three “candidates” for “the position” of my GP. I’m serious! I came up with 20 questions for our first appt., and then picked the one that I thought was the best.

    Specialists? A different story. My GP and I exhausted ourselves with resources, but then I guess I got “lucky” when I found Merlin #1. Then, Merlin #2 was one of his students so a connection! Plus, my GP knew my Gastro personally, so another connection!

    More luck? If it wasn’t for Arsey Neuro being such a fuckwad, Merlin #2 wouldn’t have referred me to someone he probably knew was decent?

    However, on the “Suck-o-Meter?” I’m still feeling nauseous and cognitively impaired so maybe I did seize. Gotta update this post now.

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  5. arifaery

    Hey there. I’m glad this doctor is “non-arsey”. Sounds like a fun guy. Wish I could find a pdoc like that.

    I am glad to see you’re still blogging. You’re blog posts make my day! Sorry I’ve been kind of absent. I just moved my blog to wordpress and I don’t get wordpress at all! Any advice?

    I don’t have the time to read the back comments on your other posts so if you directed something to me there, I didn’t get it. Not that I’m that important! :)

    Oh, this is Ari in case wordpress doesn’t make that clear.

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  6. Hi arifaery. *laughing at name* I was wondering if that was you. Yes, see comment to Margo above!

    Thanks about the blogging. Things just kind of made my world go a bit topsy-turvy. However, life is just like that sometimes, right? And you are so cute–my posts making your day. I don’t know about making one today, though. Still out of it and barfy, so seizure? If I do write something, it may take me several hours.

    Not to worry about being absent. As far as WP, I guess I need to know some specifics. You didn’t put your blog url in with this comment so send me it, and I can take a look?

    Of course you are important! I don’t manually “send” anything anywhere. Things just sit on my blog. If people come by to read in an almost, random fashion, that’s one thing. That can be done in various ways: search engines, blogrolls, my Twitter page/account, other places where I can be found on the Internet where posts are just automatically are updated like Twitter.

    Then there are feeds. People can basically “subscribe” to what I write, and they get every post I write. They can choose to read, or not. It’s just an easier way to keep track of me as opposed to the above. I always find it very flattering if someone subscribes to me via a feed (there are lots of them.)

    So, yes. Send me a link to your blog, and any questions you have? I’m not an uber-blogger, but I might be able to help?

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