Archive for the ‘Fiction is Stranger Than Life’ Category
*laughs maniacally* (actually that “mania”cally part sort of fits quite (un)well.) Or something.
It’s been a month since I’ve last posted. People are still looking at this blog. See above.
So, how are things going? See first line. Alright, I’ll stop with that. However, how about interesting? I’ll try to keep all the ins and outs of pill regimes, the ups and downs of all the changes I have made.
NOT TO BOAST DISCLAIMER: Dr. PA has now been given a Specialist’s Degree from Harvard in Neurology from Non-Arsey Neuro (he said Harvard was the best.) Tangentially, when Dr. PA was just a student years ago, she actually did email a Neurologist at Harvard. An immediate response. So despite conjecture, Non-Arsey Neuro could very well be correct.
I have been granted full control and guidance over my own treatment. Over the most disastrous epileptic event to ever occur in my life. An event that exacerbated a pre-existing condition (Typical Absence Status Epilepticus) beyond all control–as we were quickly finding out!!!
My case was bad enough before to try and find solutions. In bed for weeks (half a month) before “said event” (no longer obtaining access from Big Pharma to one of my meds we were using to treat it.) When I got it back? Efficacy down.
So, that’s the history and I think everyone knows it. Although I still wanted to add it to illustrate the gravity of me being pretty much in control of, yeah… EVERYTHING!
Of course Non-Arsey Neuro is still there. It’s odd though. As if I only need him for consults. It REALLY IS like we’re two Neurologists and we’d like to talk to each other for “an opinion.” I’ll pick up the phone or make a quick appointment.
Why? *shakes head*
*huge grin and tears start to form in eyes*
*tears drop and reaches for tissues*
All of my medical team know that I know my stuff but he is UNBELIEVABLE. INCREDIBLE. I could just keep going but are those words even enough?
Never has a doctor had THIS much confidence in my abilities and knowledge even though I’m a patient. I can’t even explain what that means to me. And especially NOW of all times!
It’s pretty crazy as there are so many multi-layered and overlapping factors:
Two ACs (Topamax and Lamictal.) Complicated enough to know which one to work with alone or both together. The pharmacology between the two is so different. My head is more than a seesaw? A roller coaster? No, both.
My moods and cycling run in three layers. During “regular times” I’m doing okay. Typical Absence Status Epilepticus? Oh, we are NOWHERE near mood stability there–well, maybe a bit of progress overall perhaps. I think so.
But this is when the EXTREMELY important third layer comes in. I’m a VERY FAST Ultradian Cycler. I’m tearing the house down with all four: depression, mania, mixed states, dysphoric manias. I’m probably making up some new ones along the way on my own!
Also, MANIA! I have somehow morphed into someone who has BP I. I’m not BP I and have never been close to it!
Another thing is, all of this has brought my Asperger’s out in a HUGE way! My moods are at a serious Bipolar level when they haven’t been like this in years. So, STIM! STIM! STIM!
My epilepsy and the seizures? Now this is some GREAT NEWS!!! I haven’t had a seizure since the beginning of August. That’s getting pretty close to two months. I can’t believe it. If I can make it 10 more? A year? I can get my DL back!!! OMG!!!
I knew we were on the right track by doing this. It just took me two agonizing years to get people to listen. Non-Arsey Neuro did. I think by Sweetie GP screaming at him! I’ll find out when I see her.
Nonetheless, by Non-Arsey Neuro getting the picture and really understanding?
“Congratulations, Dr. PA. You have now graduated from the Harvard Neurobiology School, magna cum laude. Your first patient is you.”
…pills, pills, pills…all I see are pills…pills…pills…
Dr. PA has a new (Humble Pie, Instant Karma, whatever else) philosophy: “ALWAYS TITRATE YOUR MEDICATION CHANGES!!!”
From that, I think you can gather I’ve had some problems with not titrating my increases. That were high. Really high.
I’ve done a yank. Which is completely counterintuitive to what I said above. Proper titrations=Proper discontinuations.
Non-Arsey Neuro knows I’ve done this and I’ve made an appt. to see him. This is going to be a lot harder than I thought. Or maybe we’ll get lucky and find the sweet spots fast. Maybe those levels are fine but we need to slow things down.
However, I did see changes with my seizures within a month. Not as harsh and violent and the event durations were cut in half. We’re heading in the right direction?
Now, back to the yank, no titration etc.
Everyone who goes through a med change (or even starts one for the first time) knows you’re going to feel sick. Sometimes unbearably, but you’re not at risk of any harm if it isn’t a “medical emergency.”
So what would constitute a “medical emergency?”
Clearly, any indication of “imminent death” due to the patient’s physical and/or mental state. That’s a bit of guesswork on both sides, unless perhaps someone had something like a “myocardial infarction” (i.e. a heart attack) or a “cerebrovascular accident.”
I just had to use that one. WTF? HUH? If you can manage to piece it together, it still makes your brain want to just stop so you don’t have to think anymore.
“Accident.” I love it. Loss of blood to the brain causing irreversible damage to the cells. At best, a stroke. At worst, well? The worst.
I started this a few days ago so I’ll try and continue with the deterioration from above and further deterioration now–as quickly as possible.
I was talking about what would be a “medical emergency.” Well, in my case, how about being pretty damn sick but you THINK you’ve finally tackled that. ALSO you THINK you’re mentally stable enough to move on to working with the next med change as well.
And this is the kicker for it being an emergency: you’re not aware of your own actions–precisely because YOU THINK YOU ARE JUST FINE!!!
The only way to even try attempt to describe it, to even come close? Well, in my case?
Let’s meander off into DID territory. To folks out there with any of the DID family of diagnoses (I have one–Dissociative Amnesia) or anyone who knows someone who does? It was like my med changes brought out this crazy alter that was running around while I was in a fugue state (sort of…or maybe a bit of one?) Then, said alter was damn near destroying a relationship with someone I love dearly!
I figured it out in just the nick of time before who knows what more damage I would have done beyond my prior havoc! It actually was the meds. I think that’s justifiable as a “medical emergency.”
Now let me tell you! My dead twins (see Category Womb Twin Survivor) aren’t alters in the DID sense. I don’t fit the diagnostic criteria for any of the DID diagnoses, other than the one I already have. Yet, what happens between me and my twins as “alters” if you wish is similar to DID.
So, I repeat: NOW LET ME TELL YOU!!! Going through that (because I think I caught myself doing it again just goddamn fucking yesterday!!!) is freak-you-out, bad-ass, uber-terrifying, shit! Doing something that’s so distressing but not having the knowledge that you’re doing it???
If I just got a wee taste of what some of you guys go through with DID–any way, shape of form? I kneel at your feet. I cry for you. Because I can’t tell you how much I’ve cried over it for me–and still continue to do so.
Nonetheless, this person and I now know. We’re still sifting through MY wreckage, but things have been salvaged.
Today. I am now needing my cane for malnutrition as well as epilepsy. I’ve been keeping an eye on my weight every day–not for happy, eating disordered, anorectic, wee PA–really, for health reasons. Of course med changes make you sick, don’t want to eat, but with all of these things happening so fast, I’m still probably refusing to eat because of all the land mines everywhere.
I lost 2lbs. overnight. I’m now at 92lbs. That’s 2lbs. above my “Danger Zone” number. If I go below that, everyone’s gonna go apeshit! Well, probably not Non-Arsey Neuro. Even the current number might make people…you know what? I honestly don’t even care anymore. Yes, I must eat. If the weight doesn’t rise, screw it. It’s because of making the med changes.
The moods? The other person and I can manage it ourselves. It may not be so bad now as a titration will be done.
I have to go through this. I have to take everything it gives me and everything it takes out of me. It might be my only chance at getting well.
And thank you so much to you all as Commenters patiently waiting, Twitter and Blog Followers, the same. And a certain Blog Follower who just gave me a Pingback. I’m very flattered.
I will get back to you all. I never ignore anyone here. I was even thinking of shutting down my blog. Because I just can’t BE here! I haven’t been able to be here for so long!
Working with the two meds to adjust is going to take a very long time I think. I really do.
Take care all, PA
Yep. That’s what I called it on Twitter. What I just did a few days ago. And it’s sittin’ right here with me and my mouth’s hangin’ open because I AM TOTALLY INSANE!!!
And I can’t believe it’s actually here. It’s like some sort of bizarre “technological apparition.” I keep staring at it to try and figure out if I’ve become delusional or am having a hallucination. Because there’s this other “thing” that’s sitting even closer to me. Not across the room like the…”apparition.” It’s really, really tiny!!!
I have to go outside and have a cigarette now to try and make some sort of sense here. Maybe somehow clear my head? Doubtful. BECAUSE I’M TOTALLY INSANE!!!
Alright. I’ve examined the really, really, tiny thing some more and it looks like something you’d put in your wallet. But I can’t figure out why anyone would put THIS in a wallet! It has some letters and numerals on it and “squishy” spots. The biggest letters I can read are: “B…O…S…”
Okay. Enough. I bought a BOSE® Wave III. Total insanity? I live on money given to me by the stoopid guvmunt©. Thus, I am not exactly…FILTHY, STINKIN’ RICH???
Well, hell’s bells! I spend so much time totally sick at home, completely useless, I might as well have a lovely stereo system to be totally sick and completely useless with!
Hey. It makes me less useless in one way. I can listen to music. There’s some sound (groan…sorry, couldn resist) logic for what I did. *nods*
Lovely? Oh, my. And yes, the remote control IS the size of the credit card I used to buy the damn thing!
I’ve just been mucking about with CDs to test volumes and sound outputs and…uh, this is rather interesting. GO, GO, baby MacBook AND YOUR INTERNAL DRIVE!!! CDs that I’ve burned come blastin’ out louder than manufactured ones!
AT. ONE. THIRD. OF. THE. VOLUME…
Yes, one third of the volume of the unit itself.
I wonder if I could deafen everyone on my entire floor by playing my burned CDs at MAXIMUM VOLUME!!!!!!!
I don’t think I’ll try that. Not for their sake but for my own. I’d be adjusting the volume right in front of it with the remote, right? It might make me deaf and throw me across the room at the same time. *laughing*
I think I’m fine with my neighbour too. I had a listen up close and the sound emanates forward, even though there is a rear speaker with sound output. It’s a lot more quiet. When I first started playing things, I was running out into the hallway and closing my door to see if…whoa… Not “too” loud but I’ve really got it up and you can hear it!
The sound is really clear too. Not only can I hear that with the music, but also song lyrics. That might help me out with my Asperger’s Auditory Processing Disorder issues.
Ah, whatever. It was on sale, free delivery, I’ve wanted one for years anyway. My expenses? I can handle my budget. Also, more cash if I’m not drinking?
I’m already TOTALLY INSANE!!! I may as well have a bit of fun with it!
I just had to run inside and grab baby MacBook as this is way too cool. I couldn’t wait to write it later.
The weather’s been fantastic the last two days so I’ve gone out to sit on my patio to read and/or do some writing. I only end up stopping and set whatever I’m doing in my lap. I can’t take my eyes off what I’m seeing. And I don’t even need binoculars!
My patio stretches the entire length of my floor. Everyone else above has only small balconies. We all stick to our own spaces unless we chat with neighbours in theirs. For this? My spot is the best! There’s a tree growing directly in front of my door–well, not literally! *laughing* But you get it.
The birds! And they don’t even give a shit! Well, one did. All over my door! *laughs again* What I mean to say is, they come up so close to me and completely ignore my presence. Why? They just want to get laid!!!
I don’t know anything about birds, what kind they are, except the really obvious: Robins, Blue Jays, Cardinals, Parrots, Toucans…
Yesterday, there were these two little brown ones and they were rolling around all over each other! Talk about Dirty Bird P0rn! More interestingly though, was a black female of some type picking up all sorts of twigs and things clearly to build a nest. I kept trying to look up to see where it was but she was flying back and forth too fast. Well today, I found out where it is–and exactly where I figured it was.
From her direction of flight back and forth, someone’s balcony. The person above me has a big hole lacking the proper fitting for their outside light. Granted, I had some help. From Daddy?
WOW! If he wasn’t “Daddy” yet? Boy, did he WANT to be! I’ve been sitting here for several hours now, and (presumed) “Daddy” has been almost screaming: “I’m so fucking horny! Where the hell ARE you WOMAN!!!”
I could also tell he was serious ”Daddy” material. When close enough, I could see his colour differences (males are always more “pretty”–or somehow different–than females to attract and sometimes even compete within all species.) Except for HUMANS! Oh, god no!
From a further distance, he was preening like nuts, spreading his wings out all over and puffing his chest out so much, it looked like it was going to burst!
ASIDE: Oh, bugger! It looks like it’s going to start raining! Don’t make me have to go inside!!!
So I watched “Daddy” fly around a bit, sit in the tree. He was still screaming like crazy. Then he flew down to the ground not far from me. He picked up a green leaf from a weed growing out of the brick and flew directly up to the nest. I don’t think that was a gift of courtship. My guess is he’s helping to pad the nest? He’s also trying to figure out where his damn wife is!
“Goddammit, Woman! Aren’t you back from shopping YET??? Do I have to do this ALL BY MYSELF???”
I look forward to seeing more of this stuff going on. Absolutely! I also look forward to seeing the babies as they’re just above me.
Maybe I’ll even get lucky to have an egg fall down far enough over the person’s balcony. I’ve collected Robin’s Eggs all my life so I know what colour they are! I want one of these ones though! I wonder what colour they’ll be.
Try to pay attention to Nature as much as you can. It can be excellent therapy or simply make you feel good and really happy.
No, there is no “apparently” because I actually do.
My GP called me today as she knows I’m now home from hospital. She wanted to see how I was feeling and then for the first time (I believe ever?) had to ask me the same question twice. Our conversation became a dance entitled: “Tchaikovsky’s WTF?”
Here is how it went. I also believe every patron regrets paying a single cent for the performance. Well, she was very good. Nonetheless, I also believe this was the worst pas de deux in the history of ballet. Ever.
I made my appearance on stage with the most abhorrent jeté I’ve ever done. Due to that, when I landed I did an unintentional sway back. I managed to recover and attempted my tendu. My leg was exactly as high in the air as it should have been. Fantastic! Not so fantastic? It was so out of pose. My knee was so bent and twisted, it looked completely sideways toward the audience while I was facing them. I couldn’t find my foot either.
Okay. Let’s call this “Improvisation.” Not “Car Accident.”
I was hoping everyone was really focussed on my GP doing a wonderful glissade until we became close enough, but not quite enough to embrace. She held my forearm for a brief pause as the music continued.
I whispered, “Hey, what’s up?”
She said, “They didn’t give you antibiotics for the pneumonia on the X-rays?”
I looked at her strangely and even if the audience noticed my expression, it would have been fine for the pas de deux.
We separated and I made my way through a bourrée en dehors. I made the circle a lot smaller than it should have been! However, I really didn’t do myself any favours there. I still had to keep time to meet up again with my GP! I NOW needed to stay on pointe for a lot longer! “En dehors, out the door INDEED!”
I started to wobble. Did I fail to tie my shoes correctly? Are they too loose? Did someone steal my shoes and leave theirs in my own little, storage space? I looked out of the corner of my eye. I couldn’t believe what I saw, but most importantly, my GP was going to rescue me!
She had already done several, massive changements that were not in the initial choreography. They’d never even been considered. I knew what this meant. Her changements were a way of getting her frustration out. Immediately behind me, her arm around my waist for another brief pause. Only a very slow (thank god!) turn. I stretched my right arm out in a simple allongé, palm down. The IV puncture in my arm was killing me!
Again, she spoke, “So they really didn’t give you..?!”
I stopped her. ”They told me the X-rays were just fine!”
Now I know the possible problem. Perhaps?
I was asymptomatic, but my Immune System (that’s pretty messed up already) somehow REALLY kicked into high gear. Did it start beating up on a “soon-to-be-sick” PA? Explanation for 11 days of the extremely high fevers, making me go out of my mind and totally delirious?
Well, I’m symptomatic now. I’ve been coughing and hacking at the barre, in my dressing room, just everywhere. All day and night.
Now, it was time for me to finish the performance. I had no clue what to do as I felt myself start to cough. Shit! Ah, to hell with it.
All they got with Tchaikovsky now booming for my finale was this: a weak échappé demi-pointe, and one more allongé as I could not deal with that needle puncture anymore! I then walked off the stage like a zombie.
Entering the wings as a zombie, I started to hear a lot of applause. I smiled and knew it was for my GP. She dragged me out to bow, and I did–only because I had become a zombie. We were both presented with our on stage bouquets, but I looked down and saw flowers. Red Roses for my GP, White Roses for me.
Someone even brought a very young girl to the stage. Her hair tied in a tight, ballerina bun and she had a beautiful, lace dress on. She was also holding so many White Roses I was amazed they could fit into her tiny hand!
Too shy to say anything, only a smile. A man lifted her up so I could reach the flowers. I leaned close to her ear to thank her and tell her how beautiful she looked. I shook her hand and then the man placed the concert program with a pen into my hand. I smiled back at her and signed it. Now the entire theatre was screaming!
My GP and I took one more bow and exited. I took the young girl’s flowers with me. I’ll be sure to smell them every time I have to take all of these antibiotics I have now.
CODA: With great apologies to Suzanne Farrell, Jacques d’Amboise and George if he was still with us today. Although, if you two somehow read this insanity, you might just dismiss it as, well…insanity!
Well, I’m still extremely disgusted about my behaviour from last night. However, it’s in the past. Get up, try and dust yourself off and climb back up on the mule again.
But had I received a certain document in the mail yesterday, rather than today? On top of everything else? There would have been ABSOLUTELY NO QUESTION PERIOD OF GETTING SO DISGUSTINGLY WASTED LAST NIGHT!!!
I knew it. I did. Just hearing a few, vague words from both Non-Arsey Neuro and Sweetie GP. I saw them within the last week or two. What I also saw was the two-and-half-page dictation from my consult with this “Specialist” (oh, he’s special, I won’t argue that!) for my ongoing epilepsy shit.
It’s really quite simple. You’ve all read it here.
1. Patient developed Typical Absence Status Epilepticus of catamenial origin.
2. Patient lost drug used to treat it, subsequently made everything to do with ALL of Patient’s epilepsy worse.
3. Patient has resumed drug but is still having convulsive seizures with a non-convulsive syndrome when she never had convulsive seizures with it from the start.
4. Patient is still gravely ill, cannot perform everyday functions, plus cannot leave her home for days.
What did I know (or was 99.58385% sure) he was going to say? I’m having Psychogenic Seizures. And he DID.
Although, I wasn’t prepared for some surprises! All wrapped up in such pretty paper with shiny ribbons and bows!
He misquoted me! He made me sound like I was a simpering, whimpering idiot! His writing about me even had little tinkle of a bell to hear.
Maybe I’m a little sensitive about all of this. It’s only been going on for years. It’s now at the point where its starting to actually effect and break down other systems of my body. It’s altered my life where I…loss! LOST! I WILL NEVER GET THINGS BACK!!!
I don’t hear any tinkling of bells. I hear him swinging a mallet against a gong, trying to smash it.
So what’s deal with all the tinkling and gonging? Psychogenic Seizures are real. But his tone. And he also mentioned figuring out things quickly, so as not to waste medical resources. I see. Or hear?
GONG! GONG! GONG!
Are you calling me a “malingerer?” Along with everything else you’ve tried to depict me as? Doing so as 3-year-old with broken crayons? Broken because you keep biting and chewing on them?
I understand he wants to do proper testing etc… but I can’t live like this. I won’t live like this. There may be a point when I really won’t live like this. If you catch my drift.
And if you think THAT drift is being a “malingerer?” Well, I actually told my mother straight to her face that I’d off myself. That yes, I would do it if things became so unbearable, I just couldn’t handle it anymore.
You could say that I was “malingering” myself all over my mother, but when I tried to kill myself, ended up on life support in the ICU, she was actually there every step of the way and after. Thus, my mother does not think I am a “malingerer.” She never displayed any emotion to me then.
When I told her about the future? An interesting, also minimal reaction.
She placed her hands flat together and put them to her mouth. She shook her head, ever so slightly. I could see some tears welling up in her eyes but she didn’t cry. I knew the tears were for both of us though. She wouldn’t want me to die, of course. But her tears also acknowledged that if my suffering did become too much, if that was what I had to do, she understood.
Nonetheless, I haven’t reached that point yet. If anything, I feel like committing homicide, not suicide.
Time to have a serious chat with Non-Arsey Neuro. This needs to get straightened out.
Yes, I’m an arsey, little twat but I’m stubborn until I can get answers! And I got it. I knew it all along since how a “particular” liquor is made and its contents.
No, it was always in the back of my mind. And tonight I pushed it. No, I really did. Arsey, little, stubborn twat. But I do want to figure this out and make sure of what’s going on before I see Sweetie GP. Is that just a pathetic excuse or actually valid?
Right now I feel about as sober as a judge who in way days back forgot to put on those dusty, white wigs. Today? I feel about as sober as a judge who forgot to put their pants on.
But I don’t feel sick!
However, that does not to mean I’m going to start running around like a mad woman chugging back vodka all over the place. Even if it may not look it, I do consider it a matter of my health. Just what is going on here that never happened before?
So I’ll try to get more on the ball with more intelligent posts, all of you Twitter gangs and comments and yeah? When I’m more sober. *laughing quite a lot*