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.