Rude people … ignorant people … and hope for change


Damn it, I’m tired. I slept for almost 9 hours and I’m still tired. Yesterday was a really crappy day…. It’s sad I feel like I’m saying this a lot lately, I know it comes and goes it doesn’t mean I like it though, I always want there to be some regularity to my life and… I think I just always have that searching for normal. But, I did get some real sleep today … lots of it … until my mom called and woke me up… but, she was worried because she never heard from me. I couldn’t sleep all day, and most of the night anyway. Not healthy… and I need some kind of schedule… or something… whatever.

I had that neurology appointment yesterday… No let’s back up a bit, so the job I have isn’t the job I got hired for… I thought I was going to be a manager, and instead I bake overnight. I make doughnuts overnight not exactly living the dream. I made a mistake, and I make a lot of mistakes.the problem is the egg replacement and the baking soda look exactly the same and there in similar containers, and the writing is wearing off and I accidentally picked up the baking soda instead of the egg replacement and we made dark, little, soft pretzels instead of fluffy like doughnuts. nobody told us that the wholesale goes out two hours later now that it used to we didn’t think we had time to fix it.  So we left.  I’m not even home 15 min. and we had a call to come back and I got two brand-new ass holes ripped into my backside as were fixing it….  To top it off my vocal tics and my motor tics were out of this world!  So I’m sure things, squeaking, and what ever the proper name for the noises goats make, I was doing that too.so I never bothered to tell the idiots that work day shift that I have Tourette’s syndrome.  It didn’t seem important!! it didn’t seem like they needed to know because  I see them maybe once every two weeks…if that.  But because I was stressed, tired, angry, I couldn’t suppress.  Instead of being adults the budget stupid clocking little hands that work there during the day decided they were to whisper among themselves, and just keep looking at me until finally the old blond lady came in and blurted out that she wanted to know “who was making me annoying noises”. 

I have Tourette’s syndrome.  An incurable, debilitating, frustrating, and of obnoxious brain disease. the noises are me.  Okay?! the noises are me.  Keep calm, carry-on.

I mean really, all these people are grown ass adults… They keep going back behind the mixer and chittering at each other about where the noise is coming from, does she know she’s making this noise, why is she making this noise… But nobody had the balls to say anything… until the first one blurted something out. she then decided she was going to compare her rosacea to my Tourette’s… How in the fuck can you even compare that?!?!?!? I understand it’s ignorant, I understand it’s let people don’t know what this disorder even look’s like! you don’t have to be rude.  I think that was the thing that bothered me the most about it.  You just don’t have to be rude… Then others of them kept coming over to me and asking questions and telling me how they “had no idea there was anything wrong” 

do you really think the first thing out of my mouth is going to be ‘hi, I’m Juliet I have life-threatening allergies, and Tourette’s…’ That’s like painting a gigantic target on my back and just waiting for something to happen!! I already learned that once!!!

doughnuts got redone, I didn’t get written up yet, when all had Taco Bell for breakfast and then there was the three hour neurologist appointment… The TBZ was not approved.  The pharmaceutical company won’t get it for me… The REQUIP didn’t arrive yet, so I didn’t even get to start it…and they want me to get a new primary care physician to handle my medication refills which is really stupid to me because I’ve always had my neurologist handle my medication for my brain.  And now they want somebody else to take care my medication!! .  It just seems like a way to screw things up so that way I get sick again.  I don’t want that!!! but again me refills the two of them so that way I can at least get through until I can get in… But I have to pay money to go see this other doctor and I don’t do that kind of money.  If that I pay all this out of pocket!!! yeah, you heard me!! .  I don’t have insurance! the affordable care act failed me because my state didn’t expand Medicaid… It blows…so they ordered another EEG, but this one is a 48 hour one.. So I get to go to work with my head wrapped up like a gigantic Q-tip/tampon for two full days while they study the electricity in my brain to see if the floaters that I’m having are actually seizures again or are from migraines.  They don’t feel comfortable giving me anything until after they know what the actual problem is… Kind of scares me.  What else can I do though, I need to have tests done…we need a few answers at least.  It’s just sad because I’ve had to come to the acceptance that there’s nothing that can make my Tourette’s better.  So were just looking at other ways to make me comfortable… sucks. 

I don’t want to have seizures again, Luca had seizures so I know there’s always a possibility for me too… Well, again… I guess I’m just finding myself… Wishing for a moment of normalcy… Where I’m tired of medical expenses, the bills, the dental work, everything else and I wish we could just go play…I know it’s not about being well… It’s about the quality of life that you have being sick… I just had my hopes up for change and I know it wont happen, but I can deal. I will… I think so…

 

oh well, I’m sure there was more I wanted to say earlier… but I can’t think of it now… Like I’m sure there was more I wanted to say about the walking Princeton last week but, I don’t care now.  And once there’s more pictures I can share Post I might do that… Until then to go back to looking at service dogs, drinking my tea, and probably go back to bed in an hour. 

 

::end transmission::

Why does it have to be butterflies and unicorn farts anyway?


I get tired …

 

I get tired of the IEPs that accommodate everything to the point of breathing and taking a leak …I’m tired of people looking to cripple these kids so they cant function in the real world because “they have to advocate for themselves” …and wear a god damn target on their backs that’s SO BIG they can see it from space. … I’m sick of the “empowerment”

What is so wrong with just being upset about something? What is so wrong about just being mad?! why does it all have to be … like… butterflies and unicorn farts all the time? I get tired of parents, and people, who cant accept the reality that sometimes life sucks… and life isn’t far … and sometimes you have a disorder that “has you” … some days just blow. Why can’t that just be ok? Someday… you’re not going to have your mom wiping your behind for you… you’re going to have to grow up. 

How are they getting taught they’ll have to grow up? and have to survive in the outside world… life is hard… 

I totally HATE tourette’s … and being hopeless


There are always so many things I want to say … but I run out of times to talk about it. With Davis being home the past few days too I’ve not wanted to post … I like spending time with him instead of sitting here talking about all my problems. We had a good few days. Even with all the snow. I do love the snow… so pretty… and we got to see our “pet” bunny… I love seeing her leap through the snow… so cute. Baby squirrel is adorable too but he’s not as cute through the snow, he just looks terrified. 

 

I do a lot of things to get freebies. This is the one part of my OCD that I really can appreciate and really almost like having it for. I can find a goal and work towards it. I love playing on Swagbucks and other sites like that. but, in order for me to do that I have to sign up for all sorts of other offers … One of them was for The Keystone Clinical Research Center. They’re doing OCD studies, so I figured why not try to sign up for it. With all my problems … maybe we can get something under control for once. So, the assistant called me to get information and was happy to talk to me… until I told him that I have TS. That stopped it. He appreciated that I can give my information in a concise matter to save them time … but… the researcher would have to call me back. and he did. I was shocked. 

Truly shocked. He not only called me back yesterday to discuss my case, and to let me know that with my Tourette’s that there is nothing they can do to help me… but he called me back again today too. I’ve never had a researcher call me back on a weekend to discuss with me other treatment options that might become available. He couldn’t get out of his head how hard I try to do things, and how much I have working against me. There’s no reason for me to feel like a lost cause… even if medicine hasn’t gotten to a point where I can get real help. 

He said most people don’t’t want to work with Tourette patients because we’re so complicated. there are potentially 4 parts of our brains effected and then there’s no guarantee that we’ll even respond properly to treatments… He said that my dysto would make me great for a few of the trials too, but with the TS component… not possible. and since for the past week the rigity has been the worst part for me. my neck keeps getting stuck over to the side and it pulls something fierce. and I’ve had the horrible stabbing up and through my backside. god, it’s so awful. it’s so bad to the point that I wasnt even able to walk for a day and a half… and even when I was able to try to walk it was like I was being stabbed through my body with hot irons….

There’s a new medication that’s in progress and might get approved this year called BITOPERTIN that works on the glutamate receptors in the brain. It’s in development and really seems to be working on a lot of different fronts of disorders they originally thought were Dopamine in origin. I liked this guy. He talked to me like I was on his level and not like some idiot … and really let me get my questions out … and listened to me better than the last neurologist did. He told me all about the pharma company and their compassionate use programs… He thinks that I should try back for NIH…and Kayley mentioned something she saw about Yale…I’m not sure what I think. I really, really, really could use the money. My mom hates when I sell my body for science too… 

Bunny says that I’m letting my conditions turn me into a shut-in too. He thinks I need to try to get out more, I see it happening. Even though I’ve not had any severe attacks lately I’m terrified of going out into a public area and having issues again…Sometimes I feel like its not that kind of things, its mostly that I don’t want to just do everything… and that if he’s out then he can get the mail or something… but then he tells me that its because i’m scared of going out … or i’m a shut in… what do I believe? My mom tells me that its naturally part of being a woman..that I want him to do more than he does… but he tells me that its something turning wrong with me.

Other than that… there was some stuff I wanted to talk about too, but because i was too lazy to do the post I didn’t remember it… but… I think i’ll try harder soon… or not… i really just don’t know how I feel about all of this 

But I don’t want another breakdown…


The voices in my head have been unbearable for the past week, I’m not sure what to do about them…. its actually scaring me. I talked to my mom about this stuff a bit… she has voices too and she has things like I do too…and she has to spend most of her day trying to make them go away….because she feels like I do a lot too. But, she can make them go away. I can’t ever make mine stop. I desprstly want them to stop, or give me a break….

Constantly I’m reminded of how much I fail, how bad I am… how worthless I am, and why I’m such a mistake. I can’t even stand it… today when I had a gigantic tic attack at work I just hid in the stairwell and cried. I cried my eyes out while I’m flailing on the floor because I feel like such a stupid mistake….like…why would anyone want some one like me working… like I’m the worst prep cook in the history of building 5….I even apologised to one of my bosses  for being such a gigantic bucket of fail. He looked at me all confused over it.  I felt stupid again.

I can’t have another breakdown… I can’t do that… I have to find a way to hold it together…perminangly…even when I have solemner making me feel worthless everyday…and making me feel like I cant do anything right… like I’m just a mistake and they’ll never want to keep me… I’m just still really upset over yesterday…or maybe it was sunday….

I’ve had my 3rd anaphylactic incident this month….so instead of asking someone else to go check for me I was going to go upstairs and look for myself…and go talk to whoever does that ordering because theyre still ordering them in. I got stopped in the elevator by one boss who got so upset with me for wanting to see cor myself. She reamed me out over it and how bad I am … irresponcable….dangerous….but its my body… …I get ambushed constantly…I newton know its gone because I know where it is. And why is it ok for them to send me up but not ok for me to go up on my own to see? Why did it i have to get to this point, anyway…..

S it… its late…. I have more to say… but it can wait for the sun to come up…I already slept for 6 hours… that’s another thing that has me worried about another breakdown too..but in s have been hard …and busy…and humiliating…and other things….

How did I ever get through life…and now since like…..late 2011/2012 things have been abysmal…. what is wrong with me… why can’t our life be better… how can I fix this nightmare?

“Can I use it in a sentence”


When they finally put into words that I have “Malignant Tourette’s Syndrome” … I kinda didn’t know what to think about. It seems like it’s a bit overboard to call it malignant… that’s a word they use for things like cancer… or high blood pressure… or all sorts of other bad things. Did I really have to hear a word like that when it comes to a disorder that makes my body have random fits and starts of motion I don’t control. 

There’s this doctor… the one I saw on Monday… god, it seems so long ago …but it was only Monday… The doctor we saw was nothing like we were lead to believe. He said there is nothing that can be done for me unless I want to take some wicked powerful neuroleptic medications. My reactions to medications aren’t normal and he cant make me take them … but “you can’t kill a deer without a gun, so what makes you think you can treat Tics without antipsycotics” He told me I am unarmed… I am under prepared. My tics are so severe that he doesn’t know what would be better or worse to treat… by treating the Dystonia it makes my Tourette’s worse… but by treating to Tourette’s it will make my Dystonia worse… depending on the form. He doesn’t even know how it’s possible I have a form of Dysto either. Nothing about me makes sense. 

I’m almost ready to go have the damn testing done for mitochondrial disease… I just don’t even know… or have that 23&me done… I just wish we could know for once what the hell my problem is. Sometimes I wonder if there’s ever going to be an answer. The doctor we saw told me the only hope for me would be to travel down to Baylor in Huston and see if Dr. Jankovick would be able to treat me … but I don’t have insurance. 

Oh, I left that part out, didn’t I. DBS is not an option for me, according to this one, because I am too severe. I am malignant… Oh… and because I didn’t understand it, and had to go on the NIH website to get myself an answer… “malignant TS, defined as >or=2 emergency room (ER) visits or >or=1 hospitalizations for TS symptoms or its associated behavioral comorbidities.” According to my records last year alone I had 5 hospitalizations … 1 nervous breakdown … 1 anaphylactic reaction… 2 broken bones… most due to my movement disorders… some due to the fact that 2012/13 was hell. 

He told me… and Bunny… that I am hopeless. that DBS wouldn’t work, my whole brain is obviously effected and even if he did believe that DBS was effective for Tourette’s I would need to find a clinical study because of how severe my case is. No one would want to work on me. I mean, yes… his research is out of date… he’s not worked down at Baylor for 13 years or with Jankovick in that long and he was only one of his ‘students’ …. Davis was beyond upset… we were under the impression from the other doctors that this was going to be my surgical consult… Instead it turned into an exercise in hopelessness. 

Not only that, it was a frigging ice storm… and we were almost late, the appointment was at 7:45am and they had me in the Yellow pod instead of in the GREEN pod which they’ve made alone free for me!!! So we get there and I start reacting (because I ended up having another anaphalaxctic reaction on WEDNESDAY of LAST WEEK …

Because no one seems to believe that someone can be allergic to Aloe… So when I tell her that the Aloe gloves and all the aloe shit NEEDS TO BE TAKEN OUT OF THIS ROOM RIGHT NOW … the nurse scoffed at me and just put it into the cubbord and continued on with the check in!!!!!!!!!!!!!!! I had to take 300mgs of benedryl just to make it through the appointment … that made my tics even worse. I seriously thought we were going to have to give me ANOTHER EPI… i was pissed. But… we made it through and went and found some breakfast … even if Perkins discontinued my FAVORITE thing on the menu… I dont know why its so hard to get that stupid thing…. it’s the magnificent 7, and now I have to get the fantastic 5… and i dont know why it pisses me off so much when its just a small difference but its like every time its a different reason why I cant just order it. Even when its on the menu… and we brought home a pie…

 

I guess it was just an awful reality check for me … to be considered “one of the worse” cases … i mean, I’m useto being told I’m “the worst” at things… I’ve got things Im good at… but… to know that my brain is so bad… so screwed up.. that I’m considered “one of the worst” cases out there… in the top worst cases this one has ever seen… It’s scary… it’s overwhelming… it’s depressing…

 

I think the other thing that gets me is that I was put into this tiny, little box … He told me straight faced… without even booting the computer up, without looking over my files that I have MAJOR DEPRESSION… and told me how depressed I am. Ok, so I have issues… I know I’m on two drugs for it … but when NIH tested me for Depression they remarked at how sane I actually am … they were pretty shocked because I am pretty resilient and I’m not just … completely miserable…  He told me how much it doesn’t matter. That all the medicines work the same way. That I shouldn’t use my research library … I shouldn’t look at the medical journals because I will only look at the negative things… I’ll only see the trauma and not the good things. I don’t understand that. He doesn’t know me. 

And I made the mistake of mentioning penn and how they called me Malingering… and that I needed to be in the psych hospital. he stopped talking TO ME at that point and began talking to Davis, and just talking OVER ME… it was unfair… I’ve officially found a way to move beyond the fact that Penn doesn’t believe I have anything wrong with me. I think I’ve just seen how awful it can be… and how one hospital making one decision can destroy a persons life (this reminds me of the poor Myto girl up in Boston who’s trapped in the hospital for the past year… that could have been me, that could be any of us) … I cant talk about that day anymore… I cant think about that day I cant have anything to do with it. It has to be gone. 

This doctor wanted me to try Tetrabenazine…. The drug used for huntingons disease and other Hyperkenetic movement disorders … When I checked how much it costs when I got home … a month of it is almost $10,000. It is unavailable without insurance of any kind and there are only 3 pharmacies in the country that can provide it. He won’t even look into it for me until I get insurance. He also suggested Risperdal, Haldol, Seroquel and Orap … But, anything thats not a 1st generation Antipsych he said will be ineffective … 

Somehow his analogy about killing deer and using guns make more sense …. he’s actually trying to shoot sparrows with an anti aircraft gun… And we think the last time he did research was probably 1949 and nothing has changed since he left medical school either. TBZ is out of the question. 

He also told me that no matter what I do, living with side effects is going to be part of my life forever. I have to decide what side effects I want to live with, He would pick exhaustion as the easiest one to adapt too… and me not wanting weight gain as one is asking for too much. I need to learn to live with these things. It’s part of my burdon… it’s part of being sick. I can’t keep asking for too much. There is no cure

There is no cure for me. and until I have insurance (February) there will be nothing else that can be done. He will change nothing that I’m on right now… only because it makes no sense. I shouldn’t stop what I’m doing (even though it wont make any differences) but until I’m ready to try antipsychotics again … there is no hope. I am not taking those medications… it does not work for me. and he doesn’t understand how sedatives caused me to have such side effects… They should have tranqed me, not made me hear voices. 

 

we’re going to find another hospital…Temple/St.Lukes is next, and hopefully NYU … and… other than that… I think I’m done with trying to find a solution to this. I think I need to try to take the advice of Ben Folds and just learn to live with what I am. It’s hard and painful… and after watching Shrek The Musical tonight I realize how much I’ve missed and lost out because of this… how badly I wanted to sing and how shy I was…and how embarrassed I was to be in front of people… 

 

and I know I need my tooth fixed, the filling I broke last month thats been filled with DentTemp since then…but I’m not ready to face another dentist… I’m scared of my reactions, I’m scared of people… I’m scared of having to face another dentist or another professional when I feel like I’m not stable enough for me to like …deal with things that happen and things that make me wait. I can wait… I’m scared to wait forever. I’m scared to have this tooth become an emergency almost as much as I’m scared to have to meet another dentist and try to be a big girl … 

 

oh shit. I have to be at work in 6 hours…and they’re predicting like … a foot of snow

 

::End Transmission::

a 5-day journaling break … but definitely no vacation.


I feel like crap. No, that’s definitely an insult to crap.

This falls under the category of “death warmed over

I started to fail a few days ago, right when I thought I was going to post something about my OCD…. Oh wait… I found the post … go back and look at the thing thats posted from the 18th… I kinda passed out and forgot about it… so I did it now and I really missed the whole POINT of the post … I just left it out … The point of the matter is even with medication, nothing says that all of my problems can be controlled, or even taken care of. There is no magic bullet, there is no cure… there is only ways to take the edge off.

I think of my OCD as a hangover … you can drink black coffee, you can eat something greasy, or try a Hair-Of-The-Dog… In the end, all you can do is let it run the course it must run and it’ll pass… until (in the case of hangovers) you’re stupid enough to go overboard again. Or, (when we talk about OCD) there’s another trigger and all of the stuff that you’ve been so proud of causes you to backslide into oblivion.

Usually, for me… the only other big thing that makes me collapse into a sea of OCD nothingness are my teeth. If there is anything wrong with my teeth it’s enough to make me almost lose my mind. I will be trapped in front of the bathroom mirror, with another mirror, Checking…examining… exploring… checking the inside of my mouth. Trapped by bounds of symmetry and order. Knowing there’s a hole in the one side of my mouth and not the other… knowing that one side of my mouth has been contaminated, while the other isn’t. Anxiety of things getting bigger and getting worse no matter what happens. Intrusive thoughts about my own failure for letting this happen. Then, to top it all off… demanding reassurance that things aren’t getting worse, in a time that’s SO short that things are impossible to happen… things are going to get better.

So, the same day I have my consult with the new neuro is the same day I’m getting this tooth fixed. I just have to let it hang tight until then. But… the ‘DentTemp’ stuff is keeping the OCD more under control so I can get through my day… that, and the upped medication.

wait… lemme back track… That’s how this whole problem started… the medication… We upped the Wellbutrin because… well… thats an even longer story. We started it back in the beginning of this year, and it was making me not sleep, so we dropped it, then upped it … then I went on the 9th and we decided it was time to go back to the suggested dose again. It might help me loose that 22# I need to get down anyway…

but… We’re keeping the rest of the controlled substances the same…but…  We added an ass load of new supplements… well, re-added. We added Magnesium L-threonate, because it can cross the blood-brain barrier and improve cognitive function… we brought back the Fish Oil, the 2000mg of Calcium and 2500mg  D3, 250 regular magnesium because of the nerve and muscle function problems I have …. a multi-vitamin to make up for all the other things I lack… B-6 because of it’s dopaminergic properties….

and then…. then there is N-Acety L-Cysteine… According to a study started in 2012 by Yale University 1 600mg capsule twice a day for 2 weeks… and then 2 600mg capsules twice a day for the remaining 10 weeks of the trial proved effective in children with TS. There was Improvement of Premonitory Urges, and PUTS and the YTS. So, they tried it …. on me earlier, before the breakdown and I ended up getting very sick and my allergy-induced asthma. But, that was attributed to other things, like the Effexor almost killing me and blah blah blah. But, we need to keep me stable until 12/9 when I see the new specialists….

instead…. I ended up having an ocean of spaz in my chest at work on Monday to the point that I thought I was having a heart attack … and ended up at the doctor on Tuesday on MEGA doses of asthma meds to try to make better the fact that I’m constantly surrounded by Aloe and other things that can kill me constantly … because my lungs are “clear” but in a constant state of spaz…. Time to get the spaz to stop…

So I slept all day, Bunny cooked for me … and now its time for MORE medication and back to bed, I do have work in the morning… and I WILL be bright eyed and bushy tailed for it … need to prove myself to them …..

oh snap… I need sleep…

A right hash of it….


198234  My three best therapists are my mom, Davis, and Luca…. I spent hours talking to my mom after work about everything that’s going on … and everything that needs to be fixed … and then I got to spend a little time with Lu. We’ve really not been as in touch as I wish we were… He’s one of those people who gives good advice…. tonight when i was talking to him about my life he said this to me….well, typed.

“Yep, you’ve made a right hash of your life, haven’t you, Chickadee.
Sometimes I wonder if a lot of your problems come from all of this mess you made all those years ago.
No, I’m not criticizing, when have I done that to you? We’ve all made mistakes and 

we’ve all rooted things up a time or two.

I think you’ve got a lot of forgiveness to ask for and not just from the family,
I think you need to find a way to forgive yourself,
and find a way to make
that final peace with everyone else. You know what you did and why…
I don’t agree with the reasons, but we don’t need to talk about that again.

Peace isn’t something that comes overnight, I know you’ve been
suffering for years now … you’ve tried to rebuild from the ashes
and I’ve watched you try, I’ve been proud of your success and I’ve been hurt over your failings
I hated seeing you make mistakes I did, I hated you keeping secrets… but that is who you are.

You’ve always had a problem with permanence, you’ve made stories to hide things
because everything in life would be taken away or broken. I KNOW YOU, Chickadee.
So, when it came time that someone would stay, you did the same things
you always did … that was your undoing.  

But, I think you need to find a way to … to … get to a point that you’re not
constantly tormenting yourself, constantly angry, sad, and
in pain. yes, you made some really, really, truly, horrendous
decisions… you really shouldn’t keep your own council, but I’ve been
telling you that for decades now.”

Yeah….its really true….things have been really hard for years now, i’m tired. this isn’t the life i wanted for myself. i guess tonight…. for once, i’m going to start at the top… i’m still trying to process a lot of it without crying… and god knows i need all the help i can get on occasions…most occasions.  i thought that things would be getting better by now. Instead even when I’m told that they are improving all I see is pain, desperation, and begging.  I get told things are improving… I get told things are getting better. Some days I can even see the opening glimmers of hope that come with all that stupid optimism I can’t force out.

I look at life, I look at the things I need to do … and the things I want to do … and all I see is attempts, dead dreams, broken hearts and lies. Lots of old lies … stupid, unreasonable lies to try to make myself appear “normal” from when I was a tiny creature even just trying to make up for the failings I was born with. I knew I was never good enough from when I was born … I knew. My earliest memories are of my weakness, my failures, my stupidity, my shame at just being myself …

~*~

So, where am I going with this…or why am I having this gigantic pity party for myself? What’s gotten me to this point … and yes, I have been taking my medications … and yes… in 9 hours I do have a neuro follow up that I’m probably going to end up walking to because I don’t want to waste the gas in my car….even if it is going to snow …

I work in Building 5, in the kitchen… I’m a prep cook… and sometimes I get to do a little more real cooking. I make lots of mistakes… I’m new, I’m still learning… I try really hard. I try really hard to make up for the fact that I know I’m replaceable. I know that for all they have to put up with me… this state is an At Will state… they can just fire me. They don’t need a reason, they don’t need an explanation. But, they’ve told me that my job isn’t at risk because of my disorders. Well, Thing 2 did… and I like Thing 2. I like Thing 1 too… she’s really nice … but I had a problem with Thing 3 today …. This all started on Sunday night… I thought I’d try doing the supplement route again because I’ve been struggling… So… all things went well in the evening, and the morning went ok … took the first script… but by about 10 I was starting to have major complex motors again. I had the jerking like I was having to bend forward … and I was doing Shaylas =clapclapFINGERclapclapFINGERclapclapFINGER= …. but, the worst part are the vocals… some of them cause me to scream. Some of them cause me to snort, grunt, make animal noises… or, even worse… echo other residents of the facility who also have vocal tics. 

=UnghUnghUngh= 

So it gets time for lunch service, and I’m working as hard as I can to get everything done because of how far behind we are… but I end up having severe vocal tics… it was truly like one every 3 seconds…

=UnghUnghUngh= … and over.

I can deal with that. my body was doing ok. I wasn’t on the floor I was just loud and annoying. So I’m doing everything as always … and Thing 3 comes in and keeps asking me if I’m ok. Well, I’m handling lunch service all by myself until my partner gets here. I’m not behind, we’re all set up, everything is temped and I’m already doing meals.

=UnghUnghUngh= =UnghUnghUngh=  chatter my teeth and dislocate my jaw =UnghUnghUngh=  =UnghUnghUngh=  =UnghUnghUngh= 

He tells me to go take a break until I feel better.
I’m fine

you should go sit down until you’re feeling better
I’m fine

Juliet, go outside in the hall and take a break until you have it under control. 

Ok, so I know he HAD to have said it nicer than that… but it wasn’t a suggestion… it was an order. I was sent to go sit in a chair, in the hallway. You know the last time I was told to go sit outside in a chair to get out of the way? I was 11. I was in CCD and my teacher set me to sit outside the church with no coat on as a punishment for asking too many questions and for talking. I had to sit out there until I knew what I did… and then Thing 3 today sends me to sit in the hallway until I can “Get it under control” … NO MATTER HOW ANNOYED YOU ARE… OR NO MATTER WHAT YOU THINK… I am suffering more than you are. I look around at the world every day and I see so many people who have their own problems that no one can see, no one ever needs to know about and sometimes I wish I could have something like that. I sat in the hallway sobbing my eyes out for almost 20 minutes before I went back in … still crying…

… so then one of the new PCAs thought it was funny too… one who doesn’t know whats wrong with me… and she wanted to know what the noise was … so I’m still crying, mind you. I tell her it’s me. She calls another one over and is laughing about it. The good thing is that the other PCA is one who knows me and knows I can’t help it and she got really upset with the new one. I went outside and cried again.

…and the other part was that the Chaplain was there… the one I’ve talked to about getting my CPE… so I asked the girl at the desk if she saw him later to send him to the kitchen so I could talk to him for a moment. Who would want a chaplain that makes animal noises? Who would want me to do anything other than be a stupid kitchen girl … a stupid girl who lives in the back of the kitchen hiding because of my fucking disabilities… because of my stupid alopecia and all my other problems that have made me feel like less than less of a person since I was such a little girl.

I told our Chaplain that maybe I shouldn’t go for my CPE… Who would ever want a chaplain who grunts like a pig, or copies other people noises… Who would want someone who has all this stupid shit wrong with them. Even if I did my CPE… no one would hire me. I’d be the chaplain that just like… works in the kitchen. In the back… where I can’t annoy as many people …

He told me to stop selling myself short. I understand things that others don’t understand and could never understand…He said I sell myself short. I don’t deserve to spend my life in the kitchen because of something I can’t help. and not to give up on another dream.

I cried again.

I sorta talked to Thing 3 later on about all of this, but it didn’t stop me from crying for the rest of the day…. and getting home to know my power is going to be shut off in 10 days doesn’t help either. and how much money is owed… how my credit blows… I just got home and called my mom and sobbed my eyes out until I couldn’t cry anymore…Just beyond stressed and heartbroken over how my life is … 2014 just has to be better… I can’t keep having life go on like this … but it’s already tomorrow… all I ate yesterday was 2 tacos, a little nacho… some stupid, gross hash browns and cottage cheese…

my house is gross… the dishes need to be put away and another load needs to run… I have pasta to make, bread to bake… and a house to clean… a coat to return and things to mail… Tomorrow, no wait… TODAY is my only day off until next weekend so I should try to spend the whole day getting ahead… or at least trying to get things done that just… yeah… cleaning is good for my mental health. It’s always been therapeutic for me to put things in thing. I don’t know if there’s a psychological word for it.

This is a really long middle of the night post… like… really long… I have to be up in 5 hours… and I never packed Davis’ lunch either. crap… or set the coffee maker…

I guess I really do need to shut up now.

Untitled.


I thought I’d just lay in bed for another hour this morning… I mean, whats that going to hurt? It’s my weekend off… and it’s Sunday. 

I thought I was going to try to fall asleep and let my problems fly off into dreamland with so many other things that get to me. It happened last night. I passed out at 7 and didn’t wake up again fully until about an hour ago.

I thought I would start cleaning my house, getting things organized and try to control my emotions and my slightly damaged brain this morning. I thought I’d use the S.T.O.P principle of emotional control….
instead of spending more time sitting on the floor of my kitchen sobbing.

 

 I’m sitting here writing. Writing is therapy. Sometimes I need therapy again and I know that’s a personal preference… but I know if I go back that those stupid people with 3 more years of college than I do will tell me that I am =crazy=. I’ve seen crazy. Guess what kids, I’ve been there… I know what it smells like, I know what out of control feels like. I know how it feels to be lost, cold, tired, and abandoned… but only inside your own head. That is not the kind of therapy that I need.

Oh, and did I mention I’m sitting here with only ONE knee sock on…. I’m too lazy to put the other one on. It’s not magically appearing there, and all the friendly Disney animals aren’t helping me either… and the fish are both sleeping. Guess I should put my other sock on before that foot freezes off too. 

 

I need to sit, with myself and my emotions, in some kind of quiet with just the buzzing in my own head (yes, I do have Tinnitus on  top of my other list of problem… but like many things in life, how much can you really bitch about?). Some place for me to process my own thoughts, feelings, emotions, and that burning sense of disappointment or failure that comes with the life that we currently lead. 

 

 

If any of my beautiful followers also read the blog “Of Storms and Peace” you’ll see that my dear soul-sister Holly featured me in one of her posts about Miracles… well… I’ve been stalling posting about that day because I’m not sure what it qualifies for. I broke a tooth last week, it’s one of those gigantic ones that was filled badly about 3 years ago by Dr.mc’asshole … and finally after all my ice snacking, teeth grinding, chomping and other stupid crap that I do… the filling just … well, it became a snack, (lets be real here). I call Dr.Blue eyes and they tell me they have an appointment for Wednesday at 3:40 if I can come in … sure, I’ll go to work at 5am and get out in time to take 50mgs of valium and have Bunny drive me up there. Yeah… that works… why not! We get there… I’m zonked but functioning. We sit down… they do all the usual dentist stuff. by 5:30 when he never came back to fix my tooth, the Valium wore off, the Novocaine was slowly heading on that downward spiral into abysmal and ineffective-land I lost my patience and we left. I never got to talk to Dr.Blue Eyes or anything else. 

They call me the next day, when the office is closed. “Go to CVS” they tell me “Get DentTemp by Dentek, it’s a temp filling until we can get you in and you can eat on it” they say …. (I’m still pissed off, BTW.). So I go to the crappiest CVS in the ABE area, the one on 8th avenue that anytime I try to go there is closed… or doesn’t have anything and I tic/twitch/jerk/chirp my way back over to the Oral care isle… grumble over how I have no idea what to get, I had to count bloody quarters to try to make sure we even had the money to do this because we’re flat broke… no wait… that would have meant we’re not in debt! hah! Ok, so we’re in the red and I counted quarters. 

So, like my FAVORITE song ever says “…this total stranger walked right up to me, leaned over and said something like…”

Are you ok? 
(…I have no time for this, I don’t give a shit who this person is… at least they’re being polite about it, right?” )
Yeah, I’m fine. I have Tourette’s, sorry about the noise… Am I in your way? Do you need a temp filling too? I’ll be done in a second, there’s a lot to pick from 
No, Take your time. I work at the St.Luke’s Center for Neuroscience and Neurosurgery next door, my name is Dr____. I saw you and thought you might need a consult.”
(fucking please) I’m sorry… I have no insurance, and on top of that I have no money… see. I have to even get this in quarters. and I have a neurologist who I’m seeing on Tuesday. I’ve been seen at that practice for years now. My luck with others hasn’t been good.
Dear, don’t worry about the Chirping, or the motor tics. I’m a movement disorder specialist, I’m not trying to get you to change hospitals. I might be able to help you. It’s just a consult. I’d like to see if you’d like to come schedule one, it’s only a consult. No strings, no money attached.  
yeah, sure…Look, things like this don’t happen to me. If it wasn’t for bad luck I wouldn’t have any at all… see, DIY temp filling. This just can’t be happening, to me… of all people.  (I just looked at her like she was mental at this point…this is how people get kidnapped and tied up and murdered in the woods by going with strangers).
The Consult will be free, will you come schedule with me. I work with the neurosurgeon who does Deep Brain Stimulation. Do you know about that? We could do a consultation for you to see. 
(wait… what….?) Of course I do! You are so kidding me. Where’s the camera… when am I going to get told I’m being punked here… Two of my best girls in the world have had it… one of them had like and 80% cure rate… and another friend is doing the prep work so he can get helped too. I was told I don’t qualify by UPenn, I’ve been told I’m just crazy… Psychogenic movement disorder but NIH told me I’m a severe case of Tourette’s and mild secondary Dystonia… 
Come on, dear.  Yes. We have a neurosurgeon now in the area since last year who does DBS at Temple University. It’s right across the parking lot. you can drive over if you’ll feel safer. But let’s do the paperwork to get you in and be seen. We can definitely help you.  

…and of course we walked across the parking lot, met with his chief nurse, Rod, got all the paperwork and started to get things set up. I go see Dr.C on Tuesday and we’ll get my records and stuff … and then I’ll be getting in for my first DBS consult. Like… holy snap, seriously?  Me. of all people. So I went home … Told Bunny… Told Mammy … mammy doesn’t want me to have surgery… Bunny thinks this is a good idea. I’m still stunned. and of course I told everyone I work with the next day because I’m excited.  

 

That was a few days ago at this point … my house is still a mess …. we made it through a whole 2 weeks without being overdrawn … but now, sadly… we’re going to have to overdraw because I’m a stupid fuck up who had to spend the money to get the setup for my MaryKay going and that was a little more expensive than I thought it would be… Like Davis and I were talking about last night… I”m just getting started and it’s going to charity. This is going to be a brilliant thing if I can get it working right. I want to spend part of my time today trying to drum up some business today… make some fliers and other things to attach in my books and to get a few names and phone numbers. I have a goal I want to hit by the end of the month…. its a big goal… and I want to do it so badly… Im going to try my best. and if I don’t make it, all I can say is that I tried. 

 

…and my mom and I went to the food store together yesterday and we went to look around at a few other stores. I had 2 panic attacks in the food store but I made it under budget, I left a lot of the things I wanted behind … but sometimes that’s just how we have to do it to make ends meet… that’s just how it is. I know that. My mom wants to help me but all I want to do is be able to pay her back. Davis says I’m absolutely forbidden from getting another job because he knows I’ll have another nervous breakdown… but when I got the shut off notice for the electricity again all I could do was sit there and cry on the kitchen floor for that I didn’t get the math right this week and knoing we’re going to be overdrawn… I’m so scared about money … I’m so scared about debt collectors and being trapped in this apartment forever… I don’t know how Im going to be able to cut the food bill down … cut all the bills down … Im so scared… 

 

Oh… I was going to clean this house this morning… 

a day off, medication acquired… and Questions on Brain surgery


Todays been pretty nice for me … other than the chomping tic… Have I mentioned the chomping/chattering tic lately?

I hate that thing…

I’ve been so hard on my teeth because of my motor tics that I broke a filling! I’m so upset, well… not really. I say that and start to crank myself up and then it’s a big freak out. I can’t afford to have a big freak out. I still have to carry on. I’m glad I have Valium so I can take it when I get home from work and Bunny can take me to the dentist. So, assuming I don’t sleep the whole afternoon away (not like Valium even makes me tired anymore) … you’ll either hear how well it went, or how bad it went… I’m going to guess for well. 

And Today I was asked about my feelings on DBS. For all of you who don’t know what it is… that the surgery that has shown promising results for Dystonia, OCD, Depression and Tourette’s. A long time ago I told my friend Sara that I’d never have it … That it was too dangerous… too risky… well, now that I think about it I said that like… in  the summer…this summer. I thought that  if they can manage this for me with just the medication why would I want to try for that. My mom begged me never to go for it either, she told me her little voice said not to do it … and I trust her little voice. There’s just so much that could go wrong… and infection… and disappointing. What if it doesn’t work… what if it isn’t the answer I needed it to be? What about the dangers to my personality. The whole process sounds like it scares me… it’s not a promise fix, there’s no promise that it will work. I’ve seen too many people who’ve not had positive results, or even were worse off than they were before. 

Those things are always on my mind … but… I’ve started working again… I’ve had a breakdown, my body and my mind are not what they were before that event… 

I thought about my reasons for why I’d even look into DBS … why I’d want to go for that magical consult with the doctors up in New York City to see what they’d have to tell me.

 I’d want to walk without crutches or a wheelchair, I never had to use them as a young girl even though there were times when I probably should have … I want to be able to go out alone and not have to be terrified of having an attack and ending up on the floor looking like a grand mal seizure anywhere. I’d like to not have the stares, the looks, the questions … I mean the ones I give the people who I feel are looking at me. I always have this paranoia about that. I can’t control other people, I can only control the way I feel towards them … and I feel like the eye of Mordor is staring down at me when I cant control it alone… speaking of alone…

I’d like to go out alone, drive alone, be alone and not be constantly on edge… or in pain… I’d like to have anonominity.  I’d like the fear of tics to be out of my life… I’d like the trauma of suppression to be taken away from me … I’d like to be able to not wake my husband up in the middle of the night because my tics are so severe…. I’d like to not be scared my body is going to fail me. 

I’d like to go to work and not have constant motor or vocal tics (or both at the same time) and scaring my coworkers with them, or echoing the residents, or everyone else making odd noises… I want to not constantly be cutting myself because of my tics… I’d like to have the anonymity of being “neurotypical” even if its for a few minutes… even if I’d be ticcing, or contorting… I’d be able to fool a few people sometimes… I’d like to not be scared of attacks at work, have to make contingency plans for where I can go in-case of an attack, or a trigger… I could just have ‘tics’ not this monster inside me 

I’d like to hope that my OCD could be better controlled because I wouldn’t have to worry about the medications making my tics worse…. oh, I’d like to not have to worry about interactions … I’d love to be able to drink alcohol at a party, or not pass out  during the afternoon because i have to take medication so much at such doses that my body has all these side effects that cause me to sleep constantly…

I’ve had so many concussions, I’ve broken so many bones because of this, The most recent was January when I fractured my Tibia and broke my ankle. It’s never healed right.

… I’ve lost friends, hurt family, and really feel like all of my dreams have died… leaving me with a shell of a life that has me working a job that has nothing to do with my education, or my desires, my hopes, my prayers or… my deepest dream. I had to leave a school I wanted to be at because of my tics and my OCD and my …my stupid body… and my own fears…

 …. but, I am thankful that I do have a job… and it was found for me by the Office of Vocational Rehab because of the amount acceptance for hiring disabled people … I want to feel differently Abeled, not disabled… I am thankful for my mom who supports and helps me … and happy that I have a wonderful husband and because of all his years as a CNA knows how to take care of me, and beyond that loves me and keeps me for who and what I am. 

 

it’s all a way of thinking … it’s a way of perspective…I know this is a fleeting moment of insanity where I dream about finding some magic bullet that would take this crap away. There is no such thing. I am just having DBS envy the same way I did over tamagotchi’s when I was a girl… or someones new car, or house that that I’m grown (not that the hot pink tamagotichi wasn’t totally the shit). I know, tomorrow, when I’m not so locked into being supportive for others who need this more than I do … and I get my green eyed monster under control I will see how silly it is for me to want something like that instead of feeling gratitude for all the things I can do, and will always be able to do.  

 

So.. my goal tonight is to stay up to watch Top Gear US… and make sure I wake up in enough time to get off to work early and get home for the valium to kick in, and get to the dentist in time. 

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.