Archive for June, 2009
I need help. No, I need some serious, professional help. I wish I could just run into Merlin #2’s arms right now, crying like a little child but he’s away until July 09. I need to try to get an appt. with my GP. I don’t know how quickly I could sob my way into her loving arms as well.
I have been deliberately staying away from my blog (other than a quick check for any comments so as not to be rude.) Writing about the hospital stay was easy as I had already done it all while I was there–granted, it still brought back such “happy memories.” Still, apart from that blast last night/early morning, I haven’t seen much point in blogging. Or anything, really.
I had mentioned spending one of those “can not move from the bed depression” days. That was last Thursday. Then a little more than 24 hours later I am pissed off completely (not at all like me?!) at such things I could not even mention here! What? Well, I think I know what. I’m probably triggery as all hell, now? I’m pretty, bloody fragile?
Now, I am back to the bowels of the building of depression. Although, not caring or having the energy to get out. I don’t think I’m cycling but I’ll have to keep watch, I guess. I don’t even care about that and you all know how hyper-vigilant PA is about monitoring her mental health!
So, that is one reason I decided to stop blogging…for a bit? Who wants to listen to the same drivel from a semi-suicidal, PA! Semi-suicidal? How to explain that one. Not that I’m going to just throw myself under a train tomorrow but let’s just say when it gets this bad, the mind does start to wander…
Reason number two? I’m such a mess, despite the above, writing anything else? “Sane Face Blogging?” Or even just trying to “deviate” from my mental state? I have one prior post that I had made up before I went into hospital but I don’t even care about that. I am spending most of my days nearly paralytic mentally and physically.
I don’t care about anything. There you go. Depression in its true essence and all its glory.
So, taking my own advice? Stop deluding yourself, PA, into thinking that “everything’s fine” and “you can handle it.” Just move along and get back into the swing of things, just like that! *PA snaps fingers*
PA is always telling people that when they need help, go and get it. Get it as soon as possible! I suck so much at therapy and all of that but I’m in a real hole. I can’t get out of it without professional assistance.
If I had the resilience I’ve had in the past at times and maybe if circumstances were different–I wouldn’t even be writing this post right now.
This is not the time for me to write this post. Oh, no. I’m a goddamn, fucking wreck. I spent just about all of yesterday in bed unable to move, completely depressed…yes, you know it…immobile.
But wait a minute. The earth tilted rather a bit too far on its axis–in the wrong direction.
I’m angry. What? PA never gets angry! She suppresses everything! Any form of anger is directed within.
Well, I’m feeling pretty angry now but again, I’m not going to write about it as it will no doubt be misguided, misinterpreted…totally all shot out in wrong directions.
But at least I’m actually feeling angry? I can’t even remember the last time I felt angry at all. Ever. Well, maybe? Not like this, though. Huh.
That’s a real thinker.
Angry (and now frustrated)
NOTE: All links to this series may be found at the end of these posts.
Monday, June 15, 2009
Is there a difference between “not being able to talk” and “not wanting to talk?” Is it the same thing for an Aspie or anyone else on the Spectrum? I know I’ve had a feeling deep down, way deep down inside when I know I just cannot. However, this morning what I felt was weaker. Like it was somehow softer or muted.
Well, boy did I fucking get non-verbal later! The nurse and the Social Worker came to get me and I grabbed my notebook and pen. I began to write: “Asperger’s Non-Verbal.” Before I could even finish, the Social Worker said straight out: “PA! I am not writing back and forth!”
I grabbed my notebook in fierce defiance and wrote in even larger letters:
YOU CAN NOT MAKE AN ASPIE TALK!
She repeated this “verbally.” Clearly, this Social Worker has no concept of the Autistic Spectrum. I don’t know about the nurse as she seemed to follow suit as… The Social Worker kept trying to “reassure” me that I could talk.
“PA! You can talk! PA! You can talk!” However, her “reassurance” was more like some sort of command as if I was being punished or scolded like a bad dog who had done nothing wrong–by a highly irresponsible pet owner.
I felt my blood start to boil. If I wasn’t “able to talk,” well hell! You want to see me, then? You want me to try and talk???
My throat seemed to almost close completely, I started bawling and sobbing all over, I was stuttering and shaking, I could barely get anything comprehensible out of my mouth. OMG! I even started to flap my hands back and forth as a stim!!! I have never done that!!! I am bawling again even as I write this.
They let me go after I was falling apart all over the place but not before the Social Worker told me there was a box of tissues on the table in front of me. Oh, piss off you stupid, fucking cow! I’m not retarded!!! I CAN see!!!
I went back to my room and curled up in a tiny, foetal ball on my bed still crying like mad. I had totally covered my eyes with everything to somehow…?…I don’t know. It was just an “urge” I had. Just a feeling of: GO AWAY!!! The nurse brought me my Valium/Diazepam. I sat up and wrote: “Dr.?” on my notepad. She just said, “Yes, later.”
Now, I’m sorry. Is it me here or is that not a bit traumatizing for someone on the Spectrum? Not to mention, I already had the biggest meltdown of my life only 24 hours prior! Or maybe this one is now my biggest meltdown?
EDIT: On the date of publishing this, during my conversation with P., he said the Social Worker basically pushed me over the edge and went way too far. I’ve been too out of it and trying to get it together to ponder it in greater depth. He said I should file a complaint. Maybe review with Merlin #2?
I’m being discharged today! After stroking my ego and blowing smoke up my ass…fuck, me. My inpatient Psychiatrist actually said that I am the most intelligent and articulate and blah, blah, blah… patient he’s known… However, they don’t really deal with Asperger’s and I would do better with outpatient therapy. This is a “Crisis Unit.” Bye, bye, PA! Boy, does my moniker ever suit me now, huh?
I tried to mention at least something about my comorbidities but that floated off into the ether.
So, I can be a smart, fucking Aspie but I can’t be in “crisis” at the same time. What the bloody hell does that mean?!?!
I wasn’t sure if I could be verbal when I saw him as I wasn’t earlier with the Social Worker, so I wrote up this while waiting as I was so pissed off:
I am writing this now in anticipation that I may be verbal when I speak to you. Earlier, I was not due to my Asperger’s Diagnosis. This can happen obviously with everyone on the Spectrum. I was quite disappointed with the fact that no one (the Social Worker in particular) was willing to assist in communication with me by writing. She kept insisting I speak and I wrote that you can not force or make someone do that. I found it made me more upset even though I did try but I de-escalated in my mental state because of it as a result. I am very disappointed by this.
You have probably read about my meltdown during my pass. It was the worst ever. Although the meeting today has left me crying a lot and it takes a lot to make me cry. I am scared of how you people will treat me because of my illnesses. This is a hospital for psychiatric care, yes?
I don’t know if I’m getting worse now. Very upset. Thank you for reading.
Does that not sounds like someone that needs help? I haven’t even been here for a week! I don’t know what to do. *PA crying* Well, at least Merlin #2 loves me, specializes in both child and adult Psych so I should probably book an appt. with him. Maybe my GP, too. She’s a sweetheart.
I’m scared. Back out into the world! No choice, though. Just sitting here waiting, too. J. has my keys so he has to come here at least to give them to me. I’m so fucking rattled that I’m sure if he has the time, he’ll hang out with me.
R. has been in and out of treatment today as I only saw him briefly on a stretcher, not in his wheelchair, not in his room, anywhere… It’s now almost lunch and I hope he’s alright. We’ll never get a chance to say goodbye personally! *PA crying* He was so sweet and we had so much fun at times. He told me he wrote me a huge letter while I was on pass yesterday but I felt like crap and just went to bed. He said he would give it to me today but…?
I wrote him a goodbye note *PA crying again* and walked into his room. I didn’t know where to put it. Then I found the perfect place. I had picked up a couple of pine cones outside while wheeling him around and given them to him. They were now placed in a plastic container with a damp towel to keep them safe and protected. I put it inside the container. Oh god, I don’t even want to think of him reading that note!
…just before I left, I saw R. I was crying all over but I wrote on his notepad what happened. At first, he was shocked and so sorry. I wrote that I was too. He told me to wait so he could get the letter he wrote me. Oh, the tears! We exchanged telephone numbers too. But the worst? The last image I saw as I walked out of that godforsaken place?
Lunchtime. R. No tray. His head on the table. Crying. *PA crying*
Bloody hell! I can’t even bring myself to read his letter! Some time later! But that last image of him; the last way I saw him. It’s now been imprinted, seared, burned into my brain forever. And it hurts so much.
CODA: This week, R. was released and called me. He’s still trying to learn how to use his telephone for the Deaf/Hearing Impaired but until then, we can use Operator Assisted Calling. He doesn’t live far from me ironically, so I can visit him. So, a tiny bit of happiness to end this horror show.
I still haven’t read his letter yet, however.
NOTE: All links to this series may be found at the end of these posts.
This was only written up in point form as I was in terrible shape. I thought I could transcribe it into long form but never did so now I will. It is for:
Sunday, June 14, 2009
Today is the day I am out on pass. As I mentioned, I had planned this trip before I was hospitalized and thought it might be a good idea to go anyway. Perhaps it would take my mind off things?
Actually, I went there last year and promised people I would show pictures on my blog but I never did. They needed to be altered as PA is anonymous and it just never got done. The place is a Wild Animal Sanctuary run by a woman who grew up with Learning Disabilities and this is now her dream come to reality. Just about all of the animals are domesticated so are “hands on” (they have been rescued.) The Sanctuary is not open to the public. Its purpose is to be used as therapeutic treatment for people/kids with Special Needs, on the Autistic Spectrum etc… I know. Fantastic.
I had a great time last year but this year? Not so much. In fact, well, once there…maybe a bit better but prior to arrival…? *PA hangs head*
The group agreed to meet for lunch at a restaurant (the same plan as last year) and head up together. I was a mess already but by the time everyone arrived, I became completely and totally overwhelmed. The worst ever in my life. A full-on Asperger’s meltdown!
Everyone’s voices all around me became so loud! I was completely surrounded by them and felt trapped! They began to fill my head as if nothing else was in it and the volume of their voices! It was almost painful! I felt myself starting to cry. I couldn’t even lift my head to make eye contact with J. (it is through a group he/we belong to re: this trip.) I ran out of the restaurant! J. just looked at me and said: “Smoke?”
As soon as I got outside, I just started bawling. I was flipping out all over the place. Another woman that I did know from the group that is friends with J. was familiar with the Autistic Spectrum. She came out and had a cigarette with us and we talked for a bit.
Wow. This was unbelievable. It made me feel so…”different”…? It’s like, how do I fit into the human race? So violent a reaction that no one else had! To go running outside like the building is on fire while people are simply having lunch?
If I never understood what it feels like to have Asperger’s, I sure do now!
Once we got to the Sanctuary, we could spread out a bit so I could try and calm down. But the photos! They are decidedly different from the ones taken last year! I either have total Aspie Face or am not even looking at the lens. Well, in some I might have a smile. Also, my hospital bands are visible! I couldn’t take them off for my pass! *rolls eyes*
By the time I got back, I was completely exhausted (and still rather a mess.) I did not want any more social interaction at all! Well, I told my nurse about it make sure it was in my chart and I got my meds. I also wrote about it to R. on his notepad and then just crashed.
I just got off the phone with my friend P. We have been playing telephone tag for some time now. We talked for ages and needed to bring each other up to date–especially in light of me just being hospitalized. For those that don’t know, I met him during my hospitalization before this last one–about two years ago.
Apart from all the goss, well, fuck. I took him up to where I am taking you with “The Chronicles.” We were exchanging “stories” of ill treatment from so called “Professionals” and something odd happened. It all came back. Even though I have it written down, when I was “verbally” expressing it…WHAM!
This was toward the end of our phone call and I started to go… Voice trailing off, getting shaky… P. could tell and apologized for the Trigger. I told him that it wasn’t his fault. I was stuttering by the time we ended and said goodbye.
Guess who has gone non-verbal now? Guess who has such a muddled head (more than before) that she can’t get anything straight in her mind? Guess who feels completely nauseous? Guess who has just taken a Valium/Diazepam to try and calm her fraying/ed nerves?
I know…I keep going on about “The Chronicles.” More bloody linkbaiting for all of you. I’m not doing it intentionally. *PA looks at notepad* There are only two days left. Maybe I should just write up both and be done with it all. However, it will probably be fairly long reads for everyone. Nonetheless, you will finally understand why the whole ordeal was so completely devastating for me.
What I have written up to this point hasn’t really shown any of that. I suppose only the business about how they messed up all of my meds? Only that degree of incompetence and lack of professionalism?
Well, I feel bad about continually keeping everyone in suspense. I’ll try and write everything up now…crap.
NOTE: All links to this series may be found at the end of these posts.
Saturday, June 13, 2009
Where should I start! However, I will add something positive. I’m so out of it.
My last two nights of sleep have been totally redonculous. The first, because of they gave me one of my immediate release Ritalin/Methylphenidate pills at bedtime along with my sleep meds. It is qid (four times daily) and I had only taken one so I didn’t know if it would have any massive effect on me as I have never been on it before. Let’s just say it didn’t do me any favours. The second? Who knows?
My psychiatrist said no Ritalin after 1700hrs. They have a four hour “schedule” to pass out everyone’s little candies here but since my lovely Ritalin is on a different one than theirs (none at bedtime!) I need to personally keep the schedule and remind the nurses. *PA smacks forehead* I’m sorry but is that not their job?
More on the med front? This may tie into another point. I’ve been feeling down over the last couple of days. I’m okay for a bit and them completely…blah…ugh…in a funk.
I noticed today that they are only giving me 200mg instead of 300mg of my Topomax/Topiramate! *PA smacks forehead again* It’s a little tedious to keep track of everything as it depends upon what the pharmacy has. The pills aren’t always the same as what I have at home (e.g. 100mg of my Lamictal/Lamotrigine would come in four 25mg pills.) Plus, the nurses want you to gulp them all down immediately so it’s not like I can stand there, counting, inspecting…
Apart from the “Ritalin Roller Coaster?” Well, a very abrupt drop in my blessed Topomax could definitely be a problem! No proper discontinuation? Not to mention I shouldn’t be discontinuing it anyway! As you can see from all of this, people are fucking up here with my meds! They don’t know what the hell they’re doing! Wrong dosages! Wrong times! Leaving it up to me to correct them and tell them when I need to take everything. Holy crap!
My Topomax handles the vast majority of the workload for my Bipolar. It has for years. The Lamictal was only added a little over two years ago as an adjunct when I started to go seriously off the rails. It also has proven to be great. The Topomax has also presumably done the same for my seizures as I remained seizure free until my job loss. Regardless, I am reasonably sure that taking a third of it away would cause a drop in my mood? Quite.
I spoke to the nurse and she said I did get it as someone signed off on it! So, they signed off that they made an error? I kept bitching until they said they would review it with the on call Psychiatrist who worked during the weekends.
Yesterday was total Pyjama Day. I think today will be too. I just don’t have the energy or the care for clothes–well, “real” ones.
Oh, the “positive” thing? R. wrote me another song and sang it to me. As I mentioned before, the first one he made up ad lib. This one he composed on paper and let me keep the lyrics:
Send me the pillow that you dream on
Well darling you can tell on (it’s?) me
Each night as I lay sleeping
I dreamed I held you in my arms
Send me the pillow that you dream on
Well darling I can tell it’s all yours
Such a sweetheart. He memorized it too, hours after he had give me what he wrote down!
EDIT: Later in evening, Aspie PA! Pretty damn non-verbal! Although, earlier in day ran to Nurses Station when I saw on call Psychiatrist! Fix my Topapamax! They did, so mood improving a bit? Aspie stuff? Overwhelmed by my day pass for tomorrow. I even had to write to communicate with my nurse for my meds and to tell her I was feeling so overwhelmed! She didn’t seem to care for what I had to say but at least she read it! Whee!
This is how the conversation began with Merlin #2 this morning.
Merlin #2, shaking hands in air with frustration, facial expression to match: “JUST WHAT KIND OF NEUROLOGIST DO YOU HAVE???”
PA, with Aspie face and rather flat and monotone voice: “An asshole.”
No, that was our initial exchange. I swear. Then, he asked me how I was and I became an Uber³ Spaz.
I started off saying that I was glad to be verbal as I thought I might be non-verbal and we had a lot to cover so meds first and then hospital later but meds now as they are most important and… I am typing this much better than I was attempting to utter it with him. Not to mention I was shaking and babbling but not quite stuttering. As I was hauling baby MacBook out to sit with him for “our research,” he said, “Just relax! Slow down! Sit down!”
I looked below in front of me and simply said: “Oh, there’s a chair.” *PA laughing* OMFG!!! Total Aspie Uber-Spaz!!!
We didn’t have enough time to really get into the hospital stuff but I signed off a lovely waiver for my records there. Actually, I can’t wait for them to arrive. I’d love to read just what the hell they wrote. Dickheads. I did mention a bit, in that I was released too early and am still a mess. Merlin #2 didn’t even know I had been hospitalized!
So, today it was all about meds and the stoopid guvmunt (AND ARSEY NEURO!!!)
What did he do? Well, regarding the “not allowing” Merlin #2 to write scripts…that isn’t exactly correct. It’s more complicated than that, as it involves the stoopid guvmunt’s plan. For some meds they have “conditions” based upon your “conditions.” I guess that is the simplest way to to explain it. Or? A lot of bloody, useless paperwork to keep the drones employed? Make Work Projects that Make No Sense? I am sure we can all relate.
Well, here comes Arsey Neuro’s Axe! He told Merlin #2: that.he.hadn’t.seen.me.in.two.years. Just take a moment and let that register, people. I know I sure needed a bit of time to take that piece of information in! So, if he hasn’t seen me in two years, how did I get his referral to the Epilepsy Clinic at a world renowned hospital here for Neuroscience…that I went to in April of this year???
I have considered dumping this incompetent, arrogant slimeball so many times and even brought it up with my GP the last time I saw her a couple of months ago. I told her we should consider finding someone else. Well, it’s been done! When I was leaving Merlin #2, he immediately set up a referral for me to a Neurologist he knows! *PA smiling but in a sort of happy and scared way*
Please don’t let him be Arsey Neuro #3 (recall, I wrote that the Video EEG Neuro at the Clinic was Arsey, too…)
However, one thing that I have noticed or even learned since establishing my little “Practitioner Circle,” is that when you find one really good doctor (start with primary care, GP, Family Practice etc…) something really neat can happen when you branch out and need Specialists. Although, you may (probably?) will need some luck along the way. Everyone I have and had (I just lost Merlin #1) is great and now that Arsey Neuro is gone?
NOTE: I had Arsey Neuro prior to establishing my “Circle.”
Let me illustrate by my story…and yes, a lot of luck along the way but I like to think I counterbalanced that with perseverance.
I found my GP by selecting several that were accepting new patients. I interviewed three that seemed suitable. I know, it sounds funny but I prepared questions to ask them all and then reviewed both their answers and reactions–just like a job candidate. I selected her and boy, did I make the right choice! We couldn’t find a Psychiatrist but in the meantime, I needed a Gastroenterologist. She referred me to someone she knew personally! I mean, they’re friends! I’m not sure, met in med. school? All I do know is that they are intimate aquaintances (not that intimate, my GP is married and so is he…although…?) *PA laughing*
PA jealous! I kinda like my GP! She’s pretty good looking! *PA laughing again*
Then, I was lucky and through perseverance, found Merlin #1–on my own–just like my GP. He hooked me up with Merlin #2 who was actually a student of his!
So, it’s like this whole “Medical Networking” thing. I really don’t want to say “Kevin Bacon” but interesting that my referrals have all been so “close” in nature?
Then, point being, if the doctors are all good, they care…they see the type of shit that gets pulled by Arsey Neuro…you’ll be referred where and when necessary into (hopefully) equally caring hands.
Or maybe I’m just “lucky.”
POSTSCRIPT/MORE: I just got back into my neighbourhood not long ago after waiting for so long to get everything sorted. I had no ACs left (great…a Bipolar, Epileptic Maniac completely out of control…) so pick them up. I stopped in for something to drink (I know, alcohol bad!) and have found a wifi signal. But come on! A great reason to sip some suds? Firing Arsey Neuro? You can’t deny me the privilege!
Oh, one other thing Merlin #2 said. I should file a complaint against Arsey Neuro. I told Merlin #2, it wouldn’t matter–slap on the wrist. My pharmacist said good to have on record? Maybe something to discuss with my GP? I think just escaping him would be best.
I also need to contact my gastro too about stoopid guvmunt tummy meds…AHHHH! There’s a HUGE “condition upon my condition,” there. What I normally take is not covered but there is an alternative (with the paperwork…) but after six months I need to have another endoscopy! There is a prime example of what I am dealing with re: stoopid guvmunt!
Plus, my gastro is so backed up with appts. and yet…he told me to call him personally if anything emergent comes up. Then, he would get me in right away (he’s a love.) However, those types of messages do not get to receptionists! I have tried and they won’t put me through to his direct line. I may have to get my GP to run interference (again…good to have the “Kevin Bacon” thing?) ACK! I didn’t want to mention it! She could probably just call him up from home and give him the score. *rolls eyes*
I wish we could all just get together for a goddamn, roundtable discussion! A mini-conference? Hell, I’d even go for a conference call! Skype? No need for anyone to leave their homes or offices? Yes, get my entire “Team” together! Realistically though, we do need to get some communication going between all of us–we are a “Team.” There have been too many changes, more changes are upcoming, I was just hospitalized…
*PA dons Co-ordinator Hat* Or “Helmet?”
Well, it really is all up to me. I have to make the appts. and relay the information. No other members of the “Team” know WTF. Crap. I feel like a QB. I don’t know that much about football. As a QB, you make the plays, throw the damn ball away to another “Team” member and try not to get yourself crushed by the offense? They should protect you? Or just run with it like hell and score a touchdown? Nope. Not that option. I can’t do it on my own. I need my “Team!”
“Hail Mary!” *laughing*
Greetings. I would like to offer a suggestion to you humans to witness the latest account and portrayal of me in one of your “movies” that has just been released for you called ‘Star Trek.’ I viewed it myself with the owner of this communication device, PA and her friend J. last night. If you do not already know, PA and I could be described as “alters” in your language, however, that may not quite be the correct term. Long time readers know this and she has it noted on her furthermost, right sidebar.
The “movie” is actually quite good. I highly recommend it. In fact, I would go so far to say that even if you have no interest in either me or anything remotely to do with “Science Fiction,” as you describe these things, it may still be worth your time.
“Cinematically,” I have calculated that it would be pleasing to 63.976254 per cent of your population, even if you would not care to see it. Also, it would probably appeal to your human senses of emotion frequently. If you are especially interested in this type of thing, it is worth seeing on a larger projection apparatus.
Further to the concept of emotion, at times it was rather difficult for PA to watch. She and Spock have more in common that you would think as my mother was human. In this portrayal of me, I am younger and it upset PA due to our common Human/Vulcan ancestry and my own dealings with emotion. Still, she remained as much true to her Vulcan side as possible, for she could not reveal to J. her heritage due to her writings here.
PA is also rather ill, as well. It would appear that she is having some difficulty readjusting to her Stimulant medication. That seems to be the only logical conclusion as she only feels nauseous, in pain and dizzy upon taking it. All three different types she has taken recently (although they are all Methylphenidate) have some differences in methods of action and are metabolized in dissimilar ways. Thus, she may need more time for readjustment. Also, she was on and off them for several days in between the three changes. Again, this further supports the conclusion given.