the problem with having a blog like this instead of my old livejournal is that when i do have something that i have to try to get out…. i cant really put it here anymore. that would  be cruel…. and there are even some things i don’t want to find out via someone elses blog post. with that said… today has been a physically good day, but emotionally i’m torn.

i guess my feelings are summed up by the last line of ‘Meet Virginia’ ….. i really dont want to live like this….

being public is balls sometimes….

a weekend off


The damn Hairmaxx arrived yesterday and I hope it’ll mean that my nasty, thin, alopecia-ick hair it’s better than it was a long time ago but this laser thing should make more of it grow back… i hope it works. My mom spent a lot of money on it for me because her sister said it worked she’s got a form of Alopecia too. She said it works… and we have 5 months to see if it does and if not it can be returned for a full refund. I’ve added the price of it to the money I owe my mom. This is going to be the year I finally get to pay her (and everything else I owe) back… I hope… 

A lot of people know this, but.. I hate talking about it. I lost my hair at 14….That tender age when a girl should start trying to become a woman, start learning how to bloom into who and what she is. Well, I kinda skipped that. it took me until I was almost 24 to start to get into that hair/makeup phase… I’m still stunted, technically…. 

it just started slowly… then more, and more… then began falling out in clumps until I was 16. I just gave up and started wearing anything to cover it up. I had to be on the steroids and other medications to make it so I could not be sick all the time. Sometimes you have to do what you need to do. I wish I didn’t have to be on all that medication, but I’d not be here if I wasn’t. even if means I’m more screwed up now. Catch 22, you know? It was heart breaking but I tried to make it sound like that was ok with me. Why did I need long hair, I could have a ton of short hair cuts and things…. shorter the better… I tried to make myself feel better and I convinced myself pretty well sometimes. 

sometimes. 

 

oh, I saved $172 in coupons at the store on Friday, and I got a real paycheck … that’s awesome too … and I’ve not had any major, major attacks  … but I spent the day at one of the stupidest things ever. Not fun at all … and I have work tomorrow … I think my expectations are too high, or that I want too much for an event. I need to remember that I am no one. I am one person… one person. One, small person. Who wants to help and sometimes that help isn’t wanted. I can’t change the whole world. I cant make a difference where no one wants there to be one. I certainly can’t just rock the boat because I have a different view. I was just a lowly volunteer who was told to watch the snack table… while everyone else ran. I tried to remember that my mom and I had a good day, I had an amazing friend stop by and visit… I try to remind myself that I am nothing, I am no one. I am one person… I am not the most important, I deserve nothing. 

 

but my feelings were hurt, I was angry, sad, frustrated, disappointed … disappointed in my disgusting apartment that our landlord put together with piss and newspaper … disappointed in only now getting a decent job … disappointment …


well… I tried… but candy crush took over last night and I felt like crap …so I did that and went to bed really early … passed out … and woke up ticcing the whole night away and waking up in pain, crabby, tired…and had the weirdest most disturbing dreams ever

so yeah…

Oh, I’m back again… when I started this post it was about 4pm and after sobbing my eyes out on the phone with my mammy … its 8:13 now… maybe I can get all of this post done with all the stuff stuck in my head… then go do my coupons and go back to bed again…. When I feel so tired like that, no matter that I’ve been up since 5am, had a painful and busy day when I sleep I worry that it’s me stepping closer to another nervous breakdown…. I never want that to happen EVER again… 

 

So, I went to work anyway. I can’t afford to not go to work, I cant afford to look like I can’t do my job. I don’t want to look like there are things I can’t do… and i had an attack in the early morning back in the stock room and no one was there to see it, thank god. … got almost all the prep done even the slicing with 2 of the cut gloves on… because I was so paranoid!!!  and then … even better… we’re doing lunch service and I barely make it through the service before I put myself on the floor in the hallway and have an epic attack.

So I’m sitting on the floor in the hallway outside of 5-2’s dining room … and L’s daughter brought me into her office so I could use her floor … so beyond kind, she hated that people were constantly coming up to me and being sweet… but she felt that she’d not want people looking or talking to her, why would It would be so much better if I didn’t have them. I’m glad they told me that my job is safe… I have to say that again… they’re pretty good to me. I just hate knowing that they have to be like this for me. That I can’t be NORMAL… and yes, I know that saying that …there’s no such thing as normal.  

Image … doesn’t mean I can’t look at all the people up and down, walking along the hallways and doing their jobs with their own problems that can be hidden behind that wall of “normalcy” … no one has to know about other issues. Mine is out there, it’s like the guy with the mole in Austin Powers … it’s right there to be poked at by people!!!  It lasted for OVER 45 minutes but I was kinda lucky… there was an office for me to hide in, and the one manager who knew someone with TS once was there. He got my medication for me and talked with me until it passed. He even reassured me that my job wasn’t going to be threatened because of this ….it meant a lot to me, but I was still sitting on the floor with my head whipping around and the rest of my crazy motors . Everyone was so worried about me and they kept asking what to do and its not like that stressed me out more, but it made it harder for me to have the stupid attacks without feeling like I’m a failure. I didn’t even get back to work until almost 1 because it was so bad… and insult to injury… I even tinkled my pants a bit because of how severe the jerking was. I wanted to go home early, asked if it was ok … and I still left at the end of my shift. it reminded me … I need to make a better life. I want to make a better life for us and do better. I have an opportunity here I don’t want to screw up… M went down to the kitchen to get my Bowling bag full of pills and something to drink in a real cup… he didn’t want to bring one of the sippy cups up for me… I’d like to think that had to do with leaving me least SOME dignity. It meant the world to me.

I just think its so stupid…so beyond stupid … a lot of people tell me that bullshit saying that like … “Life is 10% what happens and 90% how to I react to it” … well, its SHIT. how the hell do you NOT react badly to something that causes you to end up on the floor having convulsions and hitting yourself in the head. I’m there on the floor and all I can think about is this old icon that I have on the LiveJournal Image …are you there God?  What the hell? What the hell… really? I’ve read the books … I’ve studied different texts… Moses had a speech problem, Paul had his thorn in the flesh, Leah couldn’t see, Miriam had leprosy…Jacob had a limp. They all did great things (whether they’re real or not doesn’t matter to me right now)  … but whats going to happen to me? What am I ever going to do other than cry? Or feel like I’m only here to wonder what the point is? This group of disorders only serves to steal parts of me away and make me sit and CRY my EYES OUT because everything hurts so bad…

And my feelings have been hurt for days by someone I consider a new friend. She’s got TS too and corpro pretty bad…but she found a website that’s working on training service dogs for people with Tourette’s … but the age range is only 18-25… I don’t understand why they have an age thing on there. That’s not the point though … When I was trying to justify why it’s ok that I don’t qualify for like … anything… or any help other than medication and the fact that I have my chair and I have my crutches I get told: 

“Lol ok wheely”

“I know Mr Crutchy serves you well, but it can’t lick you on the nose when you’re having a bad day.”

Sometimes I know how much of an idiot I can be … about not wanting to get the accommodations …because its going to mean that I’ve got to admit even more that there’s something wrong… That I have to sit there and really accept myself as who and what I am… and it doesn’t matter how much I try, how much I push myself … how much I convince myself otherwise… I end up back to the point that part of my brain is broken. Like I try to forget and convince myself sometimes that I’m normal…
…then I’m on the floor having a tic attack and wondering how did this happen to me. Why did this have to happen to me or anyone else …. Why does it have to get worse? Why did I have to have a nervous breakdown … why can’t I just have a few days that are normal…. I had a day yesterday where I wasn’t having crazy tics… and I’m not ticcing a lot right now because of all the medications and i have other stuff making me nuts, and hurting, and I’m alone… but I know when i get up tomorrow it’s going to suck again… Don’t call me names. Don’t make jokes. It’s mean…. it’s just not stopped bothering me. I know she wasn’t doing it to hurt me like that but I cant let it go.  OH! and insult to injury!!! Out of peer pressure I even contacted the service dog group!! even though I’m too old and they’ll just give up on me too. We’d never be able to afford that anyway… and I need to work and I need to do well for my family even if i have like … mental health problems. 
 
I hate admitting that, not only is it neurological…but mental health too…
 
Do you ever not want to try something because you’re scared of feeling more disabled? Or like… you have to give up? 

year ago yesterday, I could have been dead


Well, I meant to post yesterday about my “year after a near death experience” .,.. but instead I went to work, ate chips and took a 6 hour nap. That seemed like a better use of my time. Just like today… I cleaned a bit and then slept for 3 hours. 

 

on the 20th of last year I kinda almost died… one of the girls that I was working with switched the tissues IN the box from plain  to Aloe & E, I blew my nose and went into anaphalaxis … Spent a day in the ER/ICU and then a week out of work because of rebound. I don’t normally remember dates like that… but this one was so awful. I never want to use my Epipen EVER AGAIN… NEVER… but at least I did know how to use it … and I’m ok now.

It’s amazing how many things in my life have changed in a year. I stopped working for them completely, had a nervous breakdown because of that… spent over 6 months out of work… and now I’m working somewhere I think I like … and I have a chance for my CPE internship… My body hates me more than it did before… I’ve made some fantastic friends who are like me … and I’ve learned to be a bit more accepting of my issues (but not much, lets not get ahead of myself because I still hate them) … um… I guess thats it, really. 

 

After a 9 day hellish stretch I’m off work tomorrow… I have a $50 visa gift card so I’m going to probably use it to find a halloween costume and do some mailing. I know it’s only $50 but I’m really excited over it… 

That really did something for me… (other than proving that tissues are dangerous). Maybe now life will start getting better? Maybe …. 

 

now I think it’s bed time again! 

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


Image

 

 

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. 

Hitting the floor (and not like a party rocker)


My tics suck. I think that’s the best way to start this whole thing… again… as usual. Oh, and I’m tired of being tired….but I know that’s just part of how things are for me. I want to do more to support our family and not feel like I’m being just… a leach… or lazy… or damaged… But my tics suck and I’m usually tired either from them, or from the medication. 

 

Today was another one of those days … and I really do tolerate where I work. Building 5 is definitely not the worst place I’ve ever been. There are a lot of things that are good about it, and a lot of things that are just =a job= about it. So that’s a good thing. Know what I mean? Not good, not bad… just, work. 

 

Oh hell, I’m too tired to do this tonight … I want to tell you all about the attack I had that lasted over an hour today…like the one where I ended up on the floor in full seizure style. The one boss was nice, and was ok with it…but … it lasted over an hour … and then when I got back to my department I had to run and do service up in 5-2 and copy the bird singing and everything else

… so I get back from that still feeling like hell … I got yelled at for not cleaning up my station and was told that I’m “unacceptable” … my answer was seriously… almost the F-word….but … I smiled and thanked boss #2 for correcting me and assured him that I wont let it happen again, even if I’m on the floor having an episode…. and that I’ll make sure that I do better next time.  Everything still hurts from my episode, people thought I was having a seizure… it was awful…

 

…but I wanted to tell him to GDIAF…

 

…now I need to get some sleep. 

on death… and the RUDEST PERSON EVER…


Where I work I deal with death in at least some perspective every day. Building 4 holds the late state Alzheimer patients… the intensive level care, and then the nursing/rehab center… and, the last stop on the living train. I see all different stages of aging through my day…. some people are just in rehab there, others are in independent living … and then the last group are in the secured unit… the late stage dementia and Alzheimer patients.

We’ve had one death since I’ve been there…we move on … It’s different in my life. I think of all the people in my life that have passed on, but none of them have hurt me as much as the anniversary of Mariel’s passing. I remember loosing Lindy and feeling my heart break… and my grandparents… but when I think of Mariel sometimes I almost feel like she was never real to begin with. It’s like… so many years… so many changes… so much has happened and so many dreams have died. I wonder what might have been different … I wonder sometimes if I could even have gone back… I know it’s so stupid to think about. 

~*~

So… Most things in building 5 are pretty good. But we’re attached to building 4-1 is the locked wing… and there is this one bitch in there … I’m going to call her ‘Reptar’ …She came into the kitchen from the locked wing and immediately was loud and rude… but the thing that started all the trouble was her coming into our kitchen and making one of those loud, awful noises that I have to copy… so she did it again… and I’m doing my work … then she did it again… and I repeated it. She’s on her way out the door back into 4-1 and she turns around and wants to know WHY AM I COPYING HER .. Excuse you?!?!

“I have Tourette’s… I can’t help make those noises”… I say it deadpan like… 

She looks at me, mouth wide open and makes the noise again … and again I echo it even though I’m trying so hard to suppress …There’s nothing I can do … thank you, echolalia for once again making my life a living hell…

“SERIOUSLY?!” and she just looks at me and is already chuckling… 

“…yes”

and she makes the noise again…I try not to do it … and then she points and lets out the biggest, loudest, longest laugh ever… loud… fingering pointing… over and over again… before heading out the door and making the noise again… 

 

and I’m left standing there

 with my mouth open,

catching flies…

 

The other two people in the kitchen with me were staring at Reptar too… They’d never seen anything like it. I was about in tears. The problem was resolved. They told one of our bosses and he asked me about it, and them … and then went out to have words with that one …. I’m glad they took care of it. Even the two who I was working with were so beyond horrified. They’d never seen anything like it.  We all had to keep asking  if that REALLY happens… Thankfully THEY went and told on her and when I had to confirm it they kept telling me that I was understating it… So The one manager took care of it and was beyond blood boiling over it…

… I’m grateful that they all support me … and they were all beyond upset over that one doing it … but, even though its been handled I’m still really hurt…I’m still really stunned and shocked and beyond disgusted that someone who is at least 35 years old would never act like that… and one being in healthcare too …

 

ugh… I’m so done tonight… 

A very emotional anniversary


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Tomorrow would be my daughters 9th birthday. Her name is Mariel Estelle. I think it’s sick funny that October 14th is National Pregnancy and Infant loss day and it’s her birthday. Someday’s (most days) I still don’t feel ready to even try to think about having another baby. Or sex. Well. Sex is hard this time of year because I think of Mariel and I just feel my heart breaking all over again.

 

 

My parts were damaged,
my heart was damaged,
my soul was damaged

and lord knows what else…

 

 

Sometimes I wonder if there’s ever a way to move through all of this. Someday’s I wish I had a place I could go to just sit with her and think. I know that where we lost her is back in Jersey and almost 2 hours away now… We don’t have a house. We have a crappy apartment with a yard that’s not ours. It wouldn’t be right anyway. She’s in Princeton… I’m here. 

I know having another baby wouldn’t replace her, and I know there is never a perfect time to try to get pregnant. I know now isn’t even close to being a -let’s think about it’ … I just feel very lonely and very sad. And we’ve lost others since then too… Sometimes I want to talk about it, I want to scream from the rooftops about it. Then I realize that I never want to talk about it. I talk to who I want to talk too…and then I put it away, back nice and safe in it’s tiny little case where it can be protected and kept away from prying eyes and judging voices….

 

So… happy Early birthday, baby girl.

Mariel Estelle (Williamson) Robinson
10/14/2004

Education is painful.


I have lots and lots of tics… the world knows this. I have motors and vocals. The people in Building 5 are really cool about it, some of them have even known people with some of my issues before. I really appreciate them for that… and I appreciate the ability to talk to at least one of them about it comfortably….and another one it’s a bit awkward but at least he’s not a jerk about it. 

So, I was having those icky, annoying squawking vocals the other day. One of the other girls came through tray line making a noise and I had to copy it… and it got a few chuckles and I try to just always be ok with it. But, I was triggered for the rest of the morning anyway and I was doing the deep throaty squawk-ish thing… but I was doing about every 5 seconds…. 

I headed back to the stock room to get a few things and another one of my coworkers came back after me. He wanted to know what the sound was. I shrugged and said it was me, He was stunned, and laughed, and didn’t believe me… I slowly started to die inside…and called for another one of our coworkers … at this point I’m starting to have an inner-freakout. I didn’t want it to be like this…. I said I have TS…but one of the cooks already was back here. 

“___ listen to this, did you know she does that” 

“yeah, she has tourette’s it’s no big deal” 

 

I was so beyond grateful. The one who never knew I had a problem apologized a million times to me, and that’s a good thing because we do lunch service together and I do like him. But, the one who made it into no big deal. He’s pretty cool. This still set off a days worth of motor tics and vocals that were really painful. I was suppressing for a good part of the day but it gets hard when I know my whole body wants to go. When I hid in my car over lunch I had an attack like the end of the world… It was hard to go back in there. It was hard to like … well… its hard because I wish this whole thing would just go away… no matter how much medication I take it’s not like its going to make it go away. It’ll get better someday. Oh, and the burn is still bad. 

Image  its really gross. I have it covered up again now because I wanted to do a bunch of stuff today. Like put conditioner in my hair and other crap…. you know, that’s another thing. I hate the whole SPD thing. It sucks. I had to give myself a bird bath because the idea of showering was enough to make me hysterical today. I don’t want to be dirty or anything, I don’t want to be like that but sometimes I just cant handle it. it makes me mad. I don’t want to be dirty but it gets too impossible for me. My brain just doesn’t let me fight the feeling. I hate it. 

and I’m really tired… so I’m going to go to bed… and then tomorrow I get to do my photos for the MedicAlert because i’m going to be in the news letter.