Archive for October, 2010
It’s been approximately three weeks that are sorely lacking suitable adjectives. I’m too exhausted to reach for my Thesaurus. Let’s say: “Insane” “Unbelievable” “Helter Skelter” “Frustrating” “Confusing” “Terrifying” “Depressing.” Fair enough? Then, take them, magnify them all to such a degree until they’re so blurry, you can’t even recognize them anymore.
When I last left off, we managed to get J. into another facility. He will be there for 30 days, so it’s only a longer, short term solution. However, it’s better than a shelter. We (his sister and I) hope he stays there! J. has extreme denial issues (just one of the reasons he ended up in this disaster!) Also, as I mentioned before, once he is in any kind of place where things seem remotely settled, he thinks everything is fine. More denial. He’s lived on “quick fixes” all his life. I think I know why, but no point in elucidating here.
The next day. The move. Get all of his stuff either into the trash or storage. Definitely no words to describe this!
Now, I knew J. was a pack rat. I’d see piles of “stuff” and even though broken, still useful. A lot of electronic components but he used them to fix things. He’s even fixed things for me. Okay, trash that! There was also a storage locker in the basement, so tackle that. Even though J. had moved to that other facility, we hoped they’d let him come and help us. His sister and I wanted to preserve at least some of his dignity, as all of this was his! So, he came. Great.
Not great. Why not great?
Just off the side of the living room, there was a closet. I had never gone in there. No reason. His sister opened it and we barely avoided a hoarder’s avalanche. It took us about 2-3 hours of pulling stuff out, trying to decide what was total garbage, what things were absolute keepers, and what things we needed J. to look at and make a final ruling. We obviously had to cancel the movers. Get them to come back the next day. We were still going on and on into the night. J. left at 1800hrs.
The next day? The movers screwed us over in costs because movers always do? Or most? J.’s sister lost it and had a total meltdown! J. chose a storage unit that was WAY too small. Had to fix that! She’s paying for everything and she is NOT flush. She wouldn’t take just a bit of money from me. I felt like total crap for her and could barely hold back tears. I just kept hugging her and giving her tissues!
She and I talked for a while last night. I probably wouldn’t have made this decision without her. We’re cut of the same cloth. We put everyone first, our own needs don’t matter, all of that. We both agreed that we need to step back from J. It’s taken us too far. Further than we thought, I think.
As soon as she gets back to Paris, she’s seeing her Psychiatrist immediately and going back on her meds! Clearly, that indicates what all of this has done to her! Her state of mind?
I still can’t sleep very well because of all of this. I feel nauseous and like I want to throw up every day. The tremor I somehow developed, plus the hives as well, haven’t gone away. My cognitive functioning is blown to bits. Just two hours after I woke up, I already needed a Valium (I haven’t taken one…yet?) Here comes the mental crash I wanted to avoid. Oops? I think I was already crashing right through everything, but didn’t even notice. One day I thought I had seized and was post-“ick”tal© but I wasn’t.
I’ll always do anything for the people I love and care about. However, with J., (and only J.) at this juncture, I can’t have daily or regular contact with him. And he will contact me daily.
His sister and I are already at the brink and barely hanging on. This is a very hard decision for me to make, but J. is going to make me really sick right now. More than I already am? In fact, just thinking about this decision is making me cry and wanting to throw up. Like his sister needing to go back on meds, this may be clearly indicative of my state of mind, as well?
Time for that Valium, now. And more Benadryl for the hives. Maybe some Gravol later if tummy won’t settle, too. And please no NCSE. The myoclonic activity in my legs and maybe one arm has increased, as well. Significant sign/symptom of the diagnostic criteria.
I think I may need to keep a close watch on wee PA over the next little while. Although she sounded quite confident in her last post, I do have some concerns. I am not entirely sure if these concerns will bear fruit. Nonetheless, if they do, I must be as prepared as possible.
Several things that I have noticed regarding her stress levels are extremely obvious. Even though she may admit to being somewhat tired and her mind is functional enough, her body is not reacting very well at all!
Her hives have yet to fully disappear and she may be breaking out in more. I have just given the next dose of Benadryl for those. She had two GERD incidents in a row, waking up in the middle of the night choking on her own gastric acid. Now, she has developed cold sores around her mouth. At least she has the best treatment in the world for that.
It is a small, blue tin called Lip Medex® manufactured by a company called Blistex. It looks like this.
If they sell it where you live, I strongly urge you to run out and buy some as soon as you are finished reading this. Also, buy the blue tin! Please do not make the mistake of buying any other coloured tin. You will be extremely disappointed.
Actually, PA was looking at it last night while in bed. It said on the lid: For cold sores, cracked and dry lips. Then on the side of the lid, there was a caution to avoid contact with your eyes. She thought for a while and found it odd that a person might get cold sores, cracked or dry lips in their eyes.
Moving forward, my concerns are that she might have a bit of a crash after all of this business is done. I am sure you all know these things can be very common under her current circumstances. There seems to be nothing but such high concentrations of adrenaline pumping relentlessly through her body. At least so far, there has been no seizure activity and the rest of her diagnoses seem to be cooperating, too.
Still, neither of the two of us will be able to tell until all is truly over. She is at home right now, taking a break from everything for the first time yet. That is unless she receives a telephone call or a text message that something is required. So far nothing, and that is good. I think she is drifting off a bit. I may be losing her. It could also be the Benadryl. Perhaps I should not interfere and let her mind simply travel wherever it wants. That may even necessitate a Valium. Which of course is fine. They were not prescribed for lack of reason.
Despite all that is going on, PA feels she is learning something. Well, of course this is teaching her a lot of things! However, there is something prominent running through her mind. It may take until the end of this to draw out the answer. We are talking about it, though. She thinks she may need to bring up the subject not only with me, as well. After all, I am just one, little bird.
First, a very, special thank you to a very, special person. They have been trying to keep my head from falling off my shoulders and a smile on my face. Spoken in ominous voice: “You know who you are…” I shall endeavor to do the same in return. *winks*
I had to look at the date of my last post. Monday. It’s now Friday. I can barely remember everything that’s happened between then and now. That’s probably a good thing for you. To include it all would stop you dead in your tracks after the first few paragraphs. Then, I suspect you would probably give up reading my blog, altogether. You may still, after this post.
J.’s sister arrived from Paris on Wednesday but I have no clue what I was doing Tuesday. That was the day after I got J. admitted to the uber-fab, short term place. I “know” I was running around doing something. Probably a lot of things. Definitely.
When his sister arrived, everything was a big fat WTF??? You see, a friend of J.’s picked her up at the airport which was great! But he stayed for almost 2hrs at the coffee shop where we all met. Gee, kind of hard to get into the “Crisis intervention, J.’s going to be homeless any day now (and more) Conversation.” Finally, the guy left and the three of us had some time to talk.
I’m picking up my mobile every five seconds, because another friend wanted: To.Go.Out.To.Dinner.
Because the world is stupid and never goes to plan, this is what occurred: I missed the call. He called J. J.’s sister was in the bathroom at the time. I wanted to say to J.’s sister, “What are we doing about dinner? You just arrived, we’re finally getting a chance to deal with things. Bloody, hell! Dinner??? We can go to DINNER another night!!!”
J. being “Denial Boy” ignores me as I say, “Call back. Let’s check with your sister…” My words were a flag about 100 ft. by 30 ft., blazing bright red, thrown in front of his face! He hung up and said: “Oh, I didn’t hear you.” Good grief! So much for continuing our conversation! However, we did cover some “practicals” over dinner.
It is good to have J.’s sister here. For one thing, I am no longer “A One Woman Army.” She’s very organized and on the ball, even though we’re both spending a lot of time spinning in circles. Also, we’ve spent enough time moanin’ and groanin’ to each other, as well as getting things (somewhat) accomplished. Not in a malicious way, mind you. It’s just that things have reached certain levels with J., where it’s not so much as how do we handle the situation(s) but how do handle him.
With each step of progress, he slips into a state of mind that basically says: ‘Oh, everything’s fine now. I don’t have to worry or be concerned.’ Well, guess what?
“J., where you currently are is still a very tenuous place. We have only found short term solutions for you. Everything is not fine and you should be concerned.”
I’ve been repeating this in one way or another for the last week. His sister has been too since she flew in. It got so bad yesterday, I told her we were feeding him and changing his diapers like a baby–only in a mental sense.
We were looking into so many things, researching this and that, trying to plan and coordinate everything we could, and J. just sat playing on the computer. Sure, he may be depressed, scared etc… However, we cannot speak for him. We cannot think for him. We are not him! He needs to take control of the areas that directly involve him instead of us guessing.
His sister even had to force him to write and fax a letter with very simple information and his signature. I had told him to do this days ago. Yes, I do have Power of Attorney (that his sister is now sharing as well) but come on! J. is not incompetent!
We’ve now found him a longer, short term solution. That move will be happening on Monday. Tuesday, a bunch of us are going to his apartment (hopefully with him coming as well) to toss things into the trash, have movers put the rest into storage. I know there will be more stuff to do over the weekend!
His sister is leaving on Thursday. A week from yesterday. The day after that? A week from today? That will be two weeks of me assuming all duties; dealing with everything. I know I will still hold Power of Attorney unless J. revokes it, and that is fine. I don’t mind that.
Nonetheless, one week from today, I will no longer be taking on all of these past roles and duties. It’s time for J. to work directly with the professionals. That is why they are there. I am still his friend to offer anything in that capacity. However, I need to get back on track after two weeks of neglecting my own issues. They’re quite significant and very problematic, too.
It’s not so much that this has been a “burden.” It hasn’t. I’ve been alright dealing with things. At least I think for the most part? No one is perfect, so I’ve had my “moments.” Plus, I know how our system works. I know how J. works! I just think it’s time to pass the baton. The next members of the team in this race, really are the professionals.
In fact, I need to pass my own baton to them. That’s after next Friday, though.
It’s been two (three?) long days and nights of doctors, nurses, social workers, hospitals, other care facilities. Coordinating with several friends, keeping J.’s sister informed of everything 24/7. She’s in Paris and will be arriving on Wednesday. Also, trying to navigate government resources and political…is that it? I think so?
Aspie Explosion, indeed! When I left J. tonight, before hitting transit to come home…BOING! I started hopping down the street like Peter Cottontail, after taking six months of my Concerta, all in one shot! Hell, not even my Concerta which is Extended Release Methylphenidate! No! Immediate Release Ritalin!!!
I guess I had to let all of the pent up energy out of me, or it just flew out of me, or both! Why? J. has given me Power of Attorney. His main reason, is because legally his next of kin would be a parent. Don’t go there. His sister would be fine, except she’s in Paris. We’ve only met once, but we get along alarmingly well. However, I have my own “agenda” for this role (J. and I have talked about me doing this before.)
J. is in denial about damn near everything. And thus, I would broaden the “Power of Attorney” clause, to allow me to advocate for him under certain circumstances. These circumstances being, that he really cannot exercise good judgment in his decision making and expressing himself regarding his needs. Yes, I’m sneaky like that. But come on! He’s drowning in Crisis Quicksand! Bugger me, if I’m going to let him drown by acting like a total arse!
So. If you haven’t figured out what this “Power of Attorney” business has en(bunny)tailed, I have to be completely on top of everything when dealing with all of the professionals.
AHHHH! Note to self: Call J.’s doctor tomorrow morning. He didn’t tell her I had Power of Attorney to release any/all medical information. He only mentioned his sister.
Clearly (or murkily) my mental state has had to take a bit of a backseat, here. I need to refill some scripts (VALIUM/DIAZEPAM!!!) but I was just too tired on the way home. Tomorrow?
There were no hospital beds available where I wanted him placed last night. We are still working with those options, though. He crashed on my floor last night, but that is NOT a solution at all! It would be the end of our friendship! It is volatile enough, thank you very much (or no thank you very much!) I currently have him tonight in an excellent, short term facility that I am very familiar with due to volunteer work etc… Short term, yet still excellent.
It was kind of funny. I had called them a couple of times from hospital when there last night. I didn’t know their procedures and I needed to find out if they had a bed. Their discharge times were around noon, and the staff person said they thought they would have a male bed the next day, so call then. I also mentioned that I was calling from the Emergency Dept. of the hospital.
When I called back today, I relayed everything from last night, and the entire situation. They asked me if I worked in the Emergency Dept. of the hospital! *laughing so hard* GO, DR. PA, GO!!! “She shoots, she scores! The crowd goes wild!!!”
Sorry. You’ll have to excuse me. I am a little tired.
The place really is amazing, though. It’s in a reconverted “mansion.” This, I already knew. However, get a load of this! I also knew it had a solid foundation for community outreach. You want “reach?” They came to us for a consult, and then we all drove down together to its location.
I have no clue about his future at the moment. I have no clue about the next five minutes. Except an impending decision whether to take a Valium or not.
I’ve just sat up. I’ve just finished a cigarette. I’m not supposed to smoke in my flat but tonight I don’t care.
I’m playing my beloved Tallis Scholars, my favourite…Taverner’s Mass…to relax. They make me cry too. But tonight? I’d cry anyway.
Not knowing for sure, but J. is “homeless” as of tomorrow. I was with him all night. He’s a disaster. Surprising? He could barely make it to see me. We talked about a lot of things, some other options (that were pretty slim.) We almost forgot about his sister in Paris! Shit! Then, my half lost idea.
Hospital. Not that I would advocate going to hospital when you’re homeless but J. carries a diagnosis or two, is on meds, and for fuck’s sake! Hello! He can barely function!
He’s petrified and scarred from prior experiences but I told him from a practical stance, it would buy him some time. Christ! You don’t have anywhere to live! Plus, they can help you? Maybe assist you in finding what you need?
He said I was “right.”
Tomorrow’s going to be rough. He has at least one friend coming over to try and deal with all of his “stuff.” He’s been trying to throw out as many of his possessions as best he can. I’ve offered to take as many I can, but I have limited space. My flat can barely fit me!
So the “plan” is to have his one friend come over and help with some minor stuff. Another friend? They’re still trying to get in touch with him. If he can come by, they’ll bring the bigger stuff that I can take, as he has a bigger car. If not? I have no clue.
Regardless, after all of that, J. will be driven over to my place with whatever I can take with “Friend No #1.” Then, I will take him to hospital. I will stay with him for how many goddamn hours it takes (and as we all know, how many hours?) until he is admitted.
I hit a bump in the road tonight, though. I seized. Not NCSE, obviously. I knew I seized so it wasn’t NCSE! I said to him if I was post-“ick”tal© I’d still drag my sorry ass to drag his sorry ass there.
I’m a little scared. I already had a bit of an immediate emotional post-“ick“tal© outburst or two. That doesn’t always happen, but sometimes. Just the way epilepsy goes. But what will I wake up to in the morning? I fear I will be sick. When you’ve had so many seizures for so long, you kind of get an inkling for this?
Maybe I’ll get lucky, though. Maybe.
Doesn’t matter? I’ve still got to get him to hospital He can’t deal with the prospect, so I don’t think he’ll be able to do it on his own.
POSTSCRIPT: While editing, indeed post-“ick”tal©. I feel sick. I’ve taken my meds. Before starting this post. Tomorrow will be messy. But it must be done. And no. None of that martyr crap going on here. Please. If you think I’m that pathetic, you’re reading the wrong blog.
Or maybe you’re not? *casts curious glance*
Ah, I knew the suitcase wouldn’t stay full for that long. I’m getting another key to make more room. Well, several keys. Actually, I think I’ll just buy the cutting machine and all the blanks they have in stock. Then order more if and/or when I run out?
What can I say? Probably a lot, so I won’t bother saying anything!
Well, alright. I’ll say one thing. If you stumble upon this post and you have absolutely no idea what I’m talking about? Do a search on “suitcase.” You may have figured that out on your own, though.
A funny thing occurred to me tonight while I was out with my friend P. I was unsure as I am still post-“ick”tal©. We took his car, though, so it was alright.
Actually, before I get to the aforementioned “funny thing” I also realized another funny thing tonight. It’s not so funny, however. Maybe neither of them are.
At any rate, the second “funny thing” is that I’ve basically been post-“ick”tal© for two weeks now. I can’t really tell, because as a result, it’s made me too brain fried! But in looking back, probably between two bouts of NCSE, it’s been going on from the beginning of the month, right up to today!
Whoa. I didn’t have a clue. No wonder I’ve been feeling a bit sicker than usual. No wonder my brain’s feeling like a locked up piece of luggage (that was unfortunately just a bit too big for a carry on, so it had to be chucked underneath the plane with all the others.) No wonder my brain is feeling a bit crushed and smashed (since it can’t compete with all the other larger pieces of luggage where we’re getting tossed around at 32,000 ft.)
That’s not really what I was referring to regarding my brain being like a suitcase. Sure, being post-“ick”tal© affects my cognition, but when out with P. I realized something different. Something I have never felt before.
I’ve never had a problem with being able to think about anything without limit. Anything, anyone, any idea, any problem…you name it. At the moment?
My brain’s a locked up suitcase. There is only so much room in it, and now all of it is taken up. It is completely full.
There are three keys. Each key is held by one person that I am concerned about right now. You may be able to guess one of them, maybe two, but I don’t think you’ll get all three.
I haven’t yet gone to the locksmith to cut a fourth key. Either to use as a spare, or to open it up to make more space.
R.’s dad dying last Saturday had more of an effect on me than I thought it would. I’m not surprised at the fact that it would have a serious effect on me, but I didn’t know how or what that would be.
Perhaps, “more” isn’t a suitable word. Because everything I felt, feel–they can’t be “measured.” The only “more” I can toss in, is that it affected me to a greater degree than my own Nana’s death! My mother’s mom. That shouldn’t be surprising with my screwed up family. But with her, I didn’t shed a single tear. I felt nothing, really. Just sheer insanity from sorting out all the details. Here? Different story.
To start? Massive flip out when I heard. Bawling all over. Then I seemed to settle after a couple of days. Today? A veritable onslaught of “The Strange?”
And to add, I’m not going to the Funeral tomorrow. Not for lack of want, it’s just time, logistics, their plans.
It took me approximately 1.5 to 2 hours to get there. The service is going to be extremely brief! Then, they are leaving the city for a reception. No one knows who has a car that can fit me in, who else may have a car that will show up. Plus, the only people I am there to see are family. If any friends attend the Funeral, I don’t need to pay my “condolences” to them!
Today. Anxious, so a Valium/Diazepam before I left. No Gravol/Dimenhydrinate, as I needed to be coherent (I am still post-“ick”tal©.) Speaking of that, walking in with Wonder Cane’s brother, I didn’t even want to whisper the words: “epilepsy” or “seizure!” They all know I have epilepsy (or at least the immediate family) but good grief! The man had a brain tumour and was seizing like crazy!
I saw R., but he was busy talking with some others, so I immediately moved on to his mom. Immediate stab to PA. She is a very strong woman but she looked so weary, and like she’d aged years since I saw her last summer! Almost teary, but in stoic way due to that strength. However, a bit shaky. It felt like she was somehow going to break at any second. Dear, god!
Quick shift to chat with cousins from out of province, their mom. They were all happy to see me as it’s been years. They were okay.
Downstairs with R. for some coffee/tea and a bit of time alone. We talked and shared some stories. I got a bit teary. I asked him about the poem I wrote for him and his family. He said he really liked it but had only showed his sister and not his mom. Well, from the above, no kidding? He didn’t mention his brother.
Then R.’s brother who still lives here. He was completely fine! I’ve often wondered if he’s an Aspie like me. Not like that’s relevant to his father dying and how he’d feel about it! He knows all about mental me and my rainbow of diagnoses. We’ve talked about them. I know he understood why I was walking around with a cane!
R. He’s upset. No matter how hard he tries to hide it, I can tell! I’ve known him for years now. Even if he’s spent so many of them overseas and we hardly ever see each other, I still know him.
On the way home, what did I feel? What did I feel? Initially, I was depressed as hell. This was the closest person to me that has died (so far.) However, not because of him being who he was to me. It was because of them. I was a part of their family.
Then I felt cold. I was dressed fine. No. I felt COLD. Like I was DEAD. I can’t explain it. I wasn’t numb. I could think. I wasn’t dissociating or anything. No PTSD stuff going on. But…this physical manifestation of being cold like you are dead. That’s all I can say about it!
Extreme exhaustion was pervasive throughout my entire trip back, but then it began to envelop me like a blanket made of lead. I couldn’t wait to get home to my dear Gravol! Also, some Advil/Ibuprophen for my pounding head if it would make a dent (in my already dented head.)
Now, I don’t know. Confusion. I feel lost (but not because I’ve lost something.) At least I don’t think? Some sadness. Fear and worry about the family–well, the mother for sure. R. said she’s going to have to sell the house.
But one thing I “know” and not “feel?” I’ve got to get my bloody affairs, papers and directives in order. I’ve been putting that off for way too long!
NOTE: This post was in no way written under the mind altering effects of Gravol. I have been completely clear in my thinking with only one exception. That would be: I am somewhat confused about my emotions and what I feel. However, this state of mind is irrelevant, as it is absolutely consistent with my cognition.
My friend R.’s dad died on Saturday. I found out yesterday but couldn’t write anything here. I could only type a few things on Twitter and a send a frantic email to someone–both with extreme typos. When I go all out of my mind, and get all upset like I’m going to shoot like a rocket through the sky, I tend to make a lot of typos.
Speaking more like a rocket shooting through the sky, I don’t even know how to get there for the arrangements quite right by transit. They live on the border of one end of the city.
Speaking more like a rocket shooting through the sky…
I’m still going a bit mental. I won’t even go into the dreams I was having last night/this morning. Dreams, nightmares…I don’t even know what the hell you’d call them!
Anyway, what I wanted to say was because of all this (the death most specifically) plus all of the other insanity, I will either take a break, or be posting like I’m that rocket up there. If that even makes sense. Because you see, I’m not making much sense and I just woke up and am already making a post and… O.o
Therefore, I am betting I’ll be doing the “rocket thing.” My entire brain will be pretty “rockety” over the next few days (I think.) The visitation is on Wednesday, the Funeral on Thursday. J. already needed me for “moral support” on Wednesday re: something he was doing. I was bawling on the phone when I told him I couldn’t see him. I felt so guilty and like a piece of shit. He seemed okay but…well, maybe not?
I think I’m feeling more and more like a goddamn rocket now, with each keystroke I make. I shouldn’t say this (jinx!) but PLEASE no seizures between now and the funeral. I DO NOT need to be post-“ick”tal©! Also, with Wonder Cane all decorated like he is, not really suitable for any “formal events.” I keep forgetting to get a brother for him for more conservative settings.
One good thing? I managed to calm my sorry ass down last night without the aid of pharmaceuticals! I have no clue how I managed to pull that one off. I won’t be able to do that over the next little while, I don’t think. Not sure.
So, in wrapping up this ugly package: All of you. Consider yourself warned.