Archive for August, 2009
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*
I just tossed an MP3 up. I’m pretty wired. I’ve taken my meds… New Neuro tomorrow. Angst.
If you read this later after the song has been taken down, “Swamp Thing” by The Chameleons. One of my all time faves from my youth, and it really is so “me.”
I mentioned in my additional comments section of MP3 of the Moment that I had streamed it on my PA Blog when I was using Blogger. It might still be there as the song left as PA is still sitting on Blogger! I didn’t want to nuke it as I thought someone might make another PA, so I kept the account valid. I just shut down any outside access, left a redirect message to find me at WP etc…
EDIT: I was right. Heh. Keep reading about the “older PA” on Blogger.
I don’t know if that’s going overboard with some paranoia as I’m not an uber-blogger, but I like being PA.
Wait a minute, that last portion: “…but I like being PA.” No. I bloody well don’t at times!
Anyway, maybe I’m sort of coming back to blogging. Maybe it’s the angst, and being wired about tomorrow? I used to suffer from unbelievable “Doctor Anxiety,” and I even blogged about it here. Also, funnily enough, the links within that post take you back to my Blogger blog that is still there!
That was the greatest thing about migrating to WP. It automagically brought everything you had created, from your initial blog, with literally one click. And maybe I was somehow smart enough to leave my Blogger blog up. The links still go back there. They don’t link back to a WP page.
Well, I guess that’s it for now. Maybe I’m coming back to my “addiction” of blogging. And maybe the meds are starting to hit as I clicked the “Publish” button before I was even done writing this! So now…edit mode quickly?
PA stupid head! Dummkopf!
I’ve never taken a blogging break before. I’ve had this blog up for what? It will be three years in November? I’ve thought about taking a break many times before, and have always been on the fence about it. I guess nothing has changed? For here you are, reading this post.
Apart from everything that has been going on for so long that you may have (or not) been reading, a major precipitating event. I had to return to my former workplace on Friday. The details are irrelevant. What does matter is that I knew it would be hard. No, beyond hard! I even took a “pre-emptive strike” Valium/Diazepam.
It didn’t even make a dent.
I was a mess. I could barely walk, talk, I was shaking. It felt like my heart was going to explode and fly out of my chest cavity. I couldn’t make eye contact with the person I needed to see. Again, I knew it would be “hard,” but I never expected it to be the disaster that it was. And on top of, transit was disastrous too, it took me ages to get home… So, there is some information for you that has made me go a little off the rails.
I’ve currently been immersing myself in the seven page document I’m bringing to my new Neuro tomorrow. I’ve been digging and digging and keep adding more. I need to stop but I can edit things to death. I should just print the damn thing off now as the appt. is early in the morning. I’ve never been to the office so I don’t know how long it will take me. I should get to bed at a decent hour? Also, it could be very interesting as I sent him an “Introduction Letter” about how I wish we could have a “collaborative relationship.” Just as I do with all of my other physicians. That, plus this huge document? *PA shakes head*
Whatever. I’m too tired to care at this point.
This week is going to be interesting as well. A new doctor tomorrow and then Merlin #2 on Thursday. We need to talk some serious business. Not only dollars re: the stoopid guvmunt (I don’t suspect that he will deny me the “pleasure” of dealing with that.) However, I have been trying to figure out the “best way” to fill out the form required.
Then, we need to talk about me being “Employment Ready.” I don’t care about that either. In my mind, I have to be. I will be. Even if I may not be?
It’s a lesser of two evils situation. Which situation requires less “pants shitting?” Me sitting at home doing nothing, worrying about going broke and what other disastrous scenarios? Like, leaping ahead to moving out, having to go on to “shared accommodation” and living with a stranger? Because sitting around and fretting…well, the mind does wander when you are under a lot of stress?
Or, as I am going to put it, go back to the “job disability place.” Just start out slowly and continue going through their processes. It will take time, but in taking that time, it may be in some way therapeutic as I am doing something. Plus, it may buy me that time I need, to be in a better space for work.
Again, sitting home alone every day…it’s not doing me well, I don’t think. More “pants shitting,” for sure.
I think I mentioned earlier (or not?) that I contacted a place about some volunteer work, so that is good too. The woman couldn’t talk at the moment when I called, so I emailed her. I’ll check it out and see if it’s suitable. It’s a “mobile” sort of thing. It involves going to schools and working with kids, so if you need a vehicle, forget it. I don’t own one and even if I did, my Driver’s License is totally fried–just like my brain! I need to be seizure free for a year where I am to have it reinstated.
God, with how crazy my seizures have been, I wonder if I’ll ever be able to drive again! *rolls eyes*
So, anyway. I’ve at least made a post here so I’m sort of semi-back, or something, I guess? I will get back to comments and emails and everything, I promise.
As always, thanks for sticking with me, everyone.
Yes, I am still here but that does not mean that I will stay here. I may still stay on break. It is just easier for me to document this when it happens and it keeps all of the events in the Category on my blog. Easy reference.
I may seize again as I just did twice, briefly, and that has happened before. Maybe something intermittent so that’s why I have to get this down fast.
Drooling, a bit and rapid eye blinking with some or total loss of vision but only app. 2 min. so hard to say. Wait, slight lost of postural tone in head and neck. It got worse with the second one which was basically the same as the first one but not so much eye blinking. It lasted the same amount of time but more loss of postural tone with head and neck. Same amount of drooling but again, brief…the second one was app. 2-3 min. as well.
Okay, I think I got that right.
Now, put it in the file…yes. Remember. New Neuro on Monday.
I may or may not need a break from blogging. I don’t know. I also took down the MP3 that I streamed last night. There was no point in really doing it, and if I am going to take a break, it would not have been wise to leave it up. If you did hear it, due to the nature of the song, it would not have been appropriate to let it remain.
There has been talk about a blogger and if he may have committed suicide by leaving a goodbye post on his blog and that’s it. Had I left up that song, and just disappeared, it may have tossed the blogosphere into more of a whirlwind, and that would have been terribly irresponsible.
So, I may be here, I may not be here, I know I have comments sitting, emails there and more may show up…I’m not sure what will happen with those right now. Anything in the future, I am not thinking clearly. I just have to get a handle on something…some things and then I’ll be back…or…something.
Thanks to you all.
That is the current number of “archived” (i.e. shoved in a file) Medscape Newsletters that I haven’t read since… Well, since they were sent. And are currently being sent. So, 741 is a only a “rough estimate.” For now?
I have a new goal. I am re-entering the Medical Blogosphere! No more bitching and whining and griping about how much my life sucks! I am heading back to where my blog was born (roughly…)
That’s right. It’s all about science from here on in. No more complaining about how pathetic I am and thus, how much my life…is also pathetic.
(…but I am going to try and get back to the Med. Blogosphere…really…)
I’m not sure if this is what’s happening as the post-“ick”tal© exhaustion is actually winning the race. Still, I’ve got to get this term noted and logged while it’s still fresh in my mushy, post-“ick”tal© head. Hang on, I need something to drink. Yes, it’s non-alcoholic for you smart alecks in the peanut gallery. Oh, and how funny when trying to read more about this. Up I come, Google Page Three. The search string wasn’t complete or fully in tact, but whatever.
Erm…yeah…researching something I don’t know that much about from my own writing.
So, we already know that I have some “issues” with post-“ick”tal© amnesia. In fact, when looking at my wee post that I wrote (as I use this blog as basically a diary) some things made me scratch my head. A bit fuzzy on those points! That’s why it is imperative for me to get things down on paper, or if at home like last night, straight onto baby MacBook.
I am highly functional immediately post-“ick”tally.© In fact, last night I was feeling kind of hungry so I was making something to eat and running around the house fully dressed with my iPod on. Okay…well…maybe not so “highly functional.” Or maybe I was just being a spaz. Either way, I didn’t need to just crash immediately. I might if I have a tonic-clonic someday (not that I’d like to…) as they can really knock you out. However, even after my Complex Partials, I am still pretty good…once I re-establish consciousness and come back to the “Land of the Living.”
The worst? Going to bed and asking: “What the hell will I be like when I wake up?” At best, I have felt nothing; at worst I have been sick as a dog for 72 hours. Today?
Yes, exhausted but also this weird feeling of…relaxation…relief? I feel like I’m fucking stoned out of my mind on one really, bizarre, barely, explainable drug trip. “post-‘ick’tal© bliss?” Apparently this can “emerge” from post-“ick”tal© amnesic states, as well. I see.
Now, I’m still clinging to stress as the causative factor for all of this seizure crapola, and how things have gotten worse since I lost my job. Everything was fine up until then! If you take the number I’ve had since, and did a simple mean average, it comes out to roughly two every month–however, it hasn’t mapped out that way. Even still, that’s pretty ridiculous if you were to go from zero to a figure like that “out of the blue.”
Not to mention, tonnes of literature out there to support stress as a factor! So, Dr. PA (Researcher PA?) even in her exhausted post-“ick”tal© state has been trying to find if there is any correlation, even hypothetically, to support a build up of said stress, and then somehow a “release” of that stress via the seizure, resulting in: TA DA! “post-ick’tal© bliss.”
So far, nada. Well, not quite nada. Nada is always my loophole. Because nobody really knows anything about this stuff anyway, right? *wink* However, there are several factors that could be, possibly, responsible for post-“ick”tal© feelings overall. That really isn’t helping me much since I’m trying to pinpoint something here. Also, my eyes are starting to become more and more crossed as I pore over more and more neurochemistry.
However, what I seem to like the best so far is Cerebral Bloodflow Changes. Just to keep it simple, the idea is you’re not getting enough oxygen to your bean. As a result, you feel totally stupid after your seizure. Metabolically, things have gotten totally out of whack so things need to get totally back into whack.
My seizures are now making me feel stoned. Gah.
I seized roughly a couple of hours ago. I was outside. I had my iPod and my jacket on. Ever since that, I haven’t taken either of them off and I am still istening to my music. I also wrote my damn, seizure post for my “records.” I’m also feeling pretty icky so post-“ick”tal© tomorrow?
But that’s not so much the point. Despite all the “bad stuff,” I’ve still been toodling around, I’ve had something to eat, I’ve taken my meds. Yes, more or less, taking care of business as usual as far as I can tell. Although, I am fully dressed as if I had to go out and run errands, go to an appt. All of that. I haven’t “stripped,” if you will.
My iPod is a definite necessity when I go out, but now that I’m home and just “toodling,” it’s “toodling” right along with me!
I’ve slept with my iPod but never walked around with it fully dressed. Maybe it’s not so “odd,” at all? Actually, nothing in this world is “odd.” Crap, nothing should really be surprising, anymore?
Perhaps I should just strike this post.
NOTE: “Current Toodle Song” is ‘Bellona’ by Junior Boys.
NOTE: “Current Toodle Song” is ‘Tribulations (Tiga’s Out of the Trance Closet Mix)’ by LCD Soundsystem.
I know…I have to go to bed…I’m trying…
Extensive drooling, lasted for app. 20 minutes, the longest experienced in Patient hx. Rapid eye blinking for perhaps two minutes but no vision loss. Then, motor spasms in both legs for app. 30 seconds. Post-“ick”tal© amnesia in trying to make account and re-account time lines. Also post-ick”tal© feelings of anxiety (unsure due to inability to account) or frustration.
NOTE: Recall events of day.
I think this says it all?
A gift from J. I guess he knows me better than I thought…