Thoughts from the floor of Building 5’s activity room…..


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Well… I do have some of the best coworkers in the world. We were T-R-Y-I-N-G to get things done today … but my head tics were insane…I had to keep looking down and shaking my head like a dog, look back up. Upper body shoulder jerks, the dystonic face…and my loud chirping vocals. It just kept getting worse. I’m use to it, and the girls on staff in the kitchen are cool with it too. About 3 hours into my shift things got to the point where I don’t know what to do anymore… So I take a break and end up in the Activity Room … it’s a really big room that looks like a half chapel, half kitchen, half living room with comfy couches 2 fish tanks and an electric fireplace. It was there I hit the floor … it was 9:22…. for the next 40 minutes I laid on the floor writhing in tic storm hell. Punching myself in the head, my arms beating myself in the back, shaking, shaking ,shaking… screaming and grunting and ending up on my back. Over and Over and Over again. I was mad, sad, embarrassed, frustrated, hurting, 

After attack #1 I looked over my shoulder and saw one of the two cats who lives in Building 5 watching me, it was the girl cat… and she’s looking at me with those pretty green eyes… I was talking to her from my spot on my back on the floor … all my crap scattered all over the room around me.,.. Just… looking. It made me think about how I have all these fears about my attacks, even with my own family. I need to find somewhere to be alone because I’m embarrassed by the weakness of my body, the strangeness of the motions, the loud noises, the frighting and self injurious behavior. But here was this cat, just sitting there … not cowering, not looking scared or upset… just watching me. I felt silly. I felt silly because I’m lying on the floor of a nursing home rec-room having a TicStorm and thinking about how this cat isn’t judging me … just like the people I work with aren’t judging me, for the most part, because of my disabilities. They’re just taking them as part of who I am and move beyond them

but it made me feel better. Sorta… didn’t make the pain from the storms go away and I hated how much time I feel was “wasted” by the whole storm….So many things I wanted to get done but won’t now… but, what choice do I have? This is what my body was doing. Time to go for the ride and try not to let it stress me more than necessary.. Even BossLady was pretty cool about it….not to worry. She’s glad I like my job with them because they really like me too… and want me to go ahead for CA2 from CA1 once the new year starts. That’s pretty cool.

Anyway, We had a fire alarm test too … so, there were more attacks, but this time I was in the room with the HR nurse, both cats, the fish … and trying to hide from the strobe lights. She’s really nice too … I’m lucky for once with this job. It’s going pretty well. My next day off is on Tuesday unless they call me for overtime again. So… since I’ve been up since 2:30 this morning… I’m going to take a short nap… then trying to do myself a nice facial and a few other things to make myself feel pretty… maybe even exercise on the Wii too. WiiFit is still the best video game I’ve got right now (next to Sonic and Zumba) …so… time for some popcorn and a nap first… 2 more days of work to go before some time off… 

 

and I have stuff I’d love to say about my marriage, but that stuff is private… well, thats what my LJ is for, now isn’t it. 

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I went missing!


Well, I’m back… what’s it been one or two days? I started the job at Building 5 today… it was really kinda nice. Not too optimistic over it but I don’t hate it either. I hope this is going to be a good thing. I don’t feel like its too hard and no one seems to mind that I have issues… OH, and I broke out in the most outrageous rash today! It was of epic proportions. I was making 18# of coleslaw today and it turns out I’m allergic to the dressing and my arms turned fire engine red and covered in hives. So, I went to talk to the nurses about it and they wanted to send me to the ER… HELL NO. Just give me some benedryl and send me back… so thats what I got and went back to work… scrubbed up and life is good.

 

I had some trouble working on the hotline too for serving the residents lunch… my tics started to get bad and it was soup and sandwich…  I had trouble with the soup for a while and spilled some and dropped one. I was still REALLY proud of myself for there being no real damage or anything to anyone or myself. i’m really proud… i hope things only get better there… but I have to get on a better medication schedule… or things aren’t going to like… stay well. I know I missed something today because my inferiority started to come back big time and I really was getting insecure and started to kinda freak out.  I just took more pills now so I should be able to get some sleep… wake up… drug out… and be ok for a while…

 

I had my MK orientation today too, Very proud… I want to do well with this… we really need the 3rd income and I really want to make better for this family. I believe I can do that…. I believe it… I have to make it possible. I’m just terrified. 

 

Oh, and the big fit of the day yesterday…I started this bitchfest on my page… and now I’m taking it here because I’m so mad… some days I really H-A-T-E where I went to school…I went to Moravian College & Theological seminary… it’s like they’re intentionally trying to hold me back even more than they did with the BAD ADVISING and incomplete program descriptions …So, now I have a chance to FINALLY go for my chaplaincy… I need ONE CLASS, ONE CREDIT of CPE… then I do my residency at another location…

so I tried to go back after I quit my job for Pastoral Care and Counseling… went all the way through all of the application process only to get to the “intervew” and to be told that I’m too crazy to work with people and that I need to wait a year and get (I swear to god) 15 doctors notes to prove that I’m not insane anymore… and that they wouldn’t approve me anyway…but try again in a year… I SOBBED MY EYES OUT…because it wasn’t fair! When I got accepted to both places in the first shot I was having a ton more problems… the only difference is that I lied… this time I did full disclosure and now I’m too batshit crazy to help people… they think i’ll be even worse off because I cant handle myself

I have 2 brain diseases… and 2 degrees…from them … so I get the ok from the priest… I get the ok from my work… I get the Ok from the NACC… I E-mail MTS about the class I need… and I get this for an answer

“Before I am able to accurately answer your CPE question, I have one for you- Are you thinking of applying for the MDIV degree? That course is only open to approved MDIV/MAPC students. Also, unfortunately, it would not be eligible for the alumnae/audit rate as this rate is for non-credit courses.”

…why in GODS NAME would I go for an MDIV degree WHEN I AM A ROMAN CATHOLIC. I can’t get ordained?!?!?!? What good would it do… and my other area is WICCA… that isn’t even recognized by the seminary as a legitimate faith… and WHAT THE HECK?!?!?!?! How cant I even get approved for anything?! YOU TOLD ME I’M TOO CRAZY TO BE A COUNSELOR FOR PEOPLE WITH MOVEMENT DISORDERS …. and i cant be good at it because the program advisor knew ONE PERSON with my issues and that’s now her bar for judgement…

OH!!! and the M.Div degree… is ANOTHER 50 THOUSAND DOLLARS… well, I already dropped almost 200K on Moco/MTS… what’s another 50K?!?!?! I only have 5K of student loan money available left too… isn’t that a kicker?!  Oh, and this is after Fr.M told me that I can be a Eucharistic minister!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 

 

oh snap, need to go to bed… we’re both in tomorrow and I have to drop Bunny off 30min before I have to be in. Bed time…

 

::End Transmission::

 

“If I was in their skin, I’d treasure every instant out there”


We’re on day 5 of the whole EVERYTHING FROM MY HAIR TO MY TOE NAILS HURTS and it’s really starting to get old… I woke up this morning ( at flipping 4:30, mind you) in a state I like to call “Moving like Jagger” Lots of quick little tight jerks of my upper body, while my stomach sucks itself in… my shoulders pull themselves back and down … and my face starts to lock up in it’s strange grimace thing… teeth chattering back and forth, jaw cracking and popping…oh, and my eyes blink shut and I get a weird buzzing in my ears … 

I don’t have the buzzing right NOW… I lucked out so far, and I can type really well with my eyes pretty much glued shut… but when the grimace happens … then I just have to wait… my whole body shivers…  and I wait… now if this only happened once or twice… well, that would be great… but it happens OVER and OVER again…

 

do you understand, truly, how hard it is to find a job like this?! To have a life like this?! to deal with this?! 

I was reading another blog today http://www.nopointsforstyle.com … and she was talking about mental illness… the failures of the system… the failures for her son… and above all … “If the diagnosis was cancer” … and I don’t want cancer, and I feel awful for anyone who has it/had it/fighting it …But at least they’re recognized… all of the societies and people and companies and television commercials all out to help cancer patients and the families affected… If only a third of that funding could be diverted….if only a third of that awareness, or just exposure could be there… and that constant BLAME could just… back off…

but flipping seriously…HER POST IS SO TRUE!!!!!

I tell someone I have Tourette’s and they want to know about cussing… “no, I do that fine without blaming one of my issues on that” 

I tell someone I have Dystonia and they give me a blank stare… “wait… whats that? Dopamine?? what’s that do? I really don’t understand what you’re talking about.”

I tell someone that I have LIFE THREATENING ALLERGIES to very, very strange things… no one is allergic to “_________”! You’re making it up because you just don’t like “_______” …”

and G-D forbid that I mention any of the Anxiety, depression, OCD, panic, or other noise in my head … then I’m just crazy … I REALLY hate the label of CRAZY. The only person who has the right to call me crazy is myself… I had this conversation with the Psych that I recently fired… 

“by calling yourself “bat shit crazy” you’re wallowing in this. You’re identifying yourself as it… like you enjoy this instead of trying to get better”

No… I’m not… If by calling myself Bat shit crazy when I’m at my lowest I can get a chuckle out of it … then it’s worth it to me … Sometimes I think that neurotypicals make the worst doctors… you don’t see the problems in the system… you don’t see the truth of whats going on. You listen to people talking without explaining why you’re doing this … or telling me HOW or WHY you understand me… or how you might be able to help me… or, convince me that I’m sicker then I actually am, causing that doctor spiral until there’s almost no way out. But if I need to call myself that to try to escape from the reality that there are so many things I can’t do… or I can’t get away from … and it makes me laugh … just let me … 

 

Davis is off today… I don’t know what we’re going to do today… he’s still sleeping (hell, NORMAL people are still sleeping… it’s just me with these issues). We have no money as usual… but I have a phone call with the local, unaffiliated, TS group today about starting a group for the tri-county area.. we’ll see how this goes. 

 

More, eventually. Now… time to wait for the fedex driver to get here… and find something to eat.