how long has it been… since a real update…


wow… This post is definitely something I’ve needed to do.  I’ve been working straight through since last weekend, and I know I was off for the run.  But that’s not really a day off for me.  I drove out to my mom’s and I spent half of Friday and then had to come home Saturday night to be called in on Sunday.  It was a full day, but I was still woken up from a stone dead sleep to come in and cover… I know I want to be the person they can depend on to do that covering… but at the same time I’m starting to think maybe that’s a bad idea. I mean, I need a break too.  I need time to rest, I need time to spend with my bunny!!  and my Skeees… and everything else. I’ve not even been able to go food shopping for a month because of this. My whole life has been uprooted. I feel like I shouldn’t complain.  

Things were so screwed up while I was out of work…. We’re still trying to recover from that.  And here I am come whining that I’ll have to do and 18 day stretch… but my mental health is suffering… Suffering bad. I get home from work and all I do is pass out… I’m up about 430 I get home 12 hours later…and I’m trying to get all house work done and everything else… And I’m trying to succeed with my Mary Kay business… But sometimes I feel like it’s impossible… Like there’s no answer for this.  Maybe I have too much going on, maybe I’m just not trying hard enough… I always feel like I’m not trying hard enough.

And I really hate when people talk to me like I’m stupid… That’s a side note, by the way.  Thing two has this condescending way about them… Where if you ask a question like I do a lot, and Thing Two feels like you should have the answer already, or should just have been able to pull it out of thin air…

But I made a promise to myself last week that I’d not be internalizing things so much anymore… not everything is my fault…. and just because something happens doesn’t mean I need to internalize it. I had a fall out with my special dentist that I’ve been seeing since 09. I had a bad experience a few weeks ago when I went to go get a tooth filled … and I flipped out when we got home and now the dentist told me that I broke the “doctor/patient trust” … The only way he’d work on me now is under generalized because of that and he doesn’t trust me anymore. I feel like after all these years and knowing all my problems … oh, and waiting almost 3 hours for one filling to be fixed is unacceptable when the dentist is over an hour away. 

I’ve been using the temporary fix to keep it stable until I find a new dentist… and I’ve not had time to do that with the whole … working every single day and thanksgiving with my parents and a few other things. But, I have to find a new dentist to fix this thing. My OCD is going to start getting beyond out of control if I don’t. The only reason I’ve not been flipping out is because of this temporary stuff…. its keeping my OCD and panic in check. It’s really cool. My mom even noticed that I’m not as bad as usual over it. I feel like it’s a really, really big milestone for me… I don’t have many like that …. because … well… there aren’t many things like that I can celebrate. I know that victories like this don’t come too often. I mean, this is my brain… I know that it’s not as simple as that “mind over matter” bullshit… or the other crap people try to tell someone with a mental or neurological illness… 

 

Um… so thanksgiving was really nice… we went to my parents and i was happy about it … and since I worked ALL DAY and every day for 6 days before that… it was pretty good to have the break… and to get to sit at a real table, in a nice, big, pretty, clean house… with all real furniture from a store. Oh, and I didn’t have to feel like we’re poor for a few minutes, or like we’re just ‘making due’ … I just got to feel like it was life going to the normal that I was use to. That’s the most comfortable thing I guess. I have a lot of mixed feelings about going “home” …but there’s always that sense of not having to worry, I can forget about so much of the crap, and the big people problems for a little bit and  feel like my dysfunctional, nuclear (in the bomb sense of the word), family is back when times were really good… Before I was scared all the time about the power being turned off, or the TV being turned off… or not being able to afford medications… and all this other drama that has come to be my daily life.  I think about the life my Grammy had, which is so much like the life we have now… and I know they got to a better place. I’m trying to convince myself that we’re going to get to that better place someday too.

 I got home from work today and decided to do an hour of Zumba instead of everything else that needs to be done in this house. I feel like I’m trying so hard and that nothing gets done … Not having a day off… and I don’t want to have to keep asking Davis for help with everything and then complaining over and over…. he does a lot… and I still don’t feel like I do enough. I’m looking forward to this next neuro consult so maybe … just maybe… 

I feel like I’m constantly backtracking here… I have to go in and say what I want… say what I need… say what I’m tired of… say what I want for my life and how I want the opportunity to see all the things I’ve missed out on. Get on with my life without all the medication, all the other issues associated. I need to be able to know that I have the right to request a specific type of treatment. I know I have the right to choose my treatment or to decline it. I need to make sure I have the ability to finally STATE what I want my treatment to be…. why I want it to be this way…Why I have made my decision … and I know what I want to do, where I want to go and how it’s important for me… 

I just need to keep this part of me ready for the 9th when we have the appointment… ugh… I had other things I really wanted to say … or needed to say but now I cant think of it … but I do have pills to take and Harry Potter 7: pt2 is on and i’ve never seen it before… even though i’ve read the books a million times.  

 

My hair is short for the first time in a decade … im tired… I have lots of medicine to take tonight, some vitamins … Oh, go to sleep and stay optimistic that the next 5-7 days goes smoothly … And I don’t have gigantic attacks EVERY day… only most days… I’m so tired of having them. They hurt so bad. But… according to my activity monitor it counts as REAL exercise every time I have one … 


Dear Blog, 

 

I’ve not forgotten about you. I’m still not in a good place… I feel on the boundary of another breakdown… I’m in the process of working 2 straight weeks, I really can’t handle it… I’ve made a resolution about not internalizing but I still feel like I’m set adrift… my body is fighting me, I feel sick… my anxiety is overwhelming… my OCD is out of control… I need a day to sleep. 

 

and Ive had no time to blog… no time to process all my thoughts and stresses and everything else… I am overwhelmed… I have no routine… I need to find a new schedule… this house is abysmal… I don’t know what to do… I just don’t know… I just… I just need some time… but i don’t have enough… but I really need some time… 

 

I guess I need to try to start right now… I need to start fresh… I need to start fresh and mean it this time. I just have to focus…


Ive not been posting… my mental state hasn’t been good. I have things I need to say but I’ve not had time … 

 

 

my mental state is bad. I need to write for my sanity but I can’t do it… maybe when I have some time off… but I MUST make it through tomorrow and the next day at minimum… 

 

 

my mental state is bad….

my reasons why.


I was asked again today why I’d want to go through with DBS… why would I even want to look into it when there are people worse off than I am … or that the medication can help me so why do I have to want more. Or, am I ready to ask a specialist… the new specialist… for what I want, what I need. 

 

There’s something I have big problems with … saying what I want and need, instead of what I would =like= or just wanting to try… or doing. It’s easier for me to play the game of indecision instead of trying to make up my mind or say what I truly need. The problem is how much that makes everyone else’s life miserable…  Wow, this post is hard for me. 

 

… I guess… I’ve had to practice my reasons why. I’ve actually had to work on my reasons and just work on the words coming out of my own mouth. I Want DBS. I want to understand normalcy, I want to understand anonymity. I want to experience things that a neurotypcial person can experience. I don’t want my life to continue being a never ending cycle of medication and side effects…or timing… I’ve really been practicing how to say what I want… it’s important to me … 

 

ugh… i have more i want to say… but i want to go lye down. 

The choices we make…


So… according to the hand book for Building 5, if you call out within your 90 days you can be fired. So… of course I get sick and of course I had to go to the doctor and of course I had to call out … I hated having to do it. So, I get to work on Thursday and of course they tell me all about the times they’ve all been written up … and how everything crosses the Executive Directors desk and they’ll have to have a word with me … 

I was advised not to talk to her … let it wait… 

 

I cant listen … I need to talk to her. I’m out of Paxil, my OCD is spiraling out of control… so I go to her office and we have a chat… she’s not writing me up… they have no problems with me, only glowing things. They like me. I felt like a gigantic OCD weight was lifted off my shoulders. 

 

Sometimes I feel like people don’t understand. I don’t -not listen- because I want to … sometimes I don’t listen because I have no choice in the matter… there’s going to be no peace for me until I have an answer. Or a panic attack…

the whole “batkid” fiasco, and how replaceable you really are


So, Most people saw on the news how San Francisco decided to drop 105K on one child in remission from Leukemia. Ok, don’t get me wrong… Cancer sucks and no one should have to go through that. Also, Make-A-Wish is a good thing for children who are severely ill… But seriously. You shut down a city for one child, in remission … what about all the children who are chronically ill with a whole slew of diseases or disorders that might not =kill= them physically, but will crush their souls or make them suffer physically and mentally for the rest of their lives? What about the children who are hungry because of food stamp cuts, children who can’t read or do maths because of education cuts … what about the sick children who don’t have insurance, or adequate insurance for their health, their teeth…

yes, yes … I know… CHIP and OBAMACARE and all this other crap… But, that’s in the process. How is it socially just to spend so much money  …but, when I was in college we talked about  the broad concept of Social Justice being the fair and compassionate distribution of the fruits of economic growth. I don’t see how this was fair, although compassionate, to do this. I think about all the families and the children I know with Dystonia, or Tourette’s… Stiff-Person-Syndrome … Mitochondrial disease! But, Cancer gets so much funding… and so many other things are so hardly known … It’s just like … sometimes I don’t understand how this world works. 

 

I know, me and everyone else in this world…Nothing makes any sense. 

 

So, one of the girls I work with got fired today … I almost felt bad for her because she blamed panic disorder for her problems here among other things. I felt terrible for it, but I also had a moment of seeing myself a few jobs ago. I can see a lot of my past in her present. I feel sad for her that she’s out of work so close to the holidays with a family to take care of … but I’ve had to learn a lot of things in a hard and painful way. I’m at a better place now then I ever was… but it’s so hard sometimes to see other people in that place I was. Times have changed, I’ve learned its better to keep my head down and mouth shut than make trouble … I’ve learned that just agreeing is better, and sometimes… all the time… its not worth arguing over. Do my job, clean up, do my best… and leave it all at the door.

 

No post tomorrow, unless I feel like trying to play with this on my Tablet… Saturday we’re going to be at New Jersey Runs for Tourette Syndrome….I’m beyond not up to running, but we’re going to show support. 

 

and the really sad thing is that when I’m crazy sick… my stupid tics and my dysto get better. I’ll never understand that. So many other people get worse when they’re sick… but mine get tolerable. I have DIFFERENT sick tics then I do when I’m well. I’ve got a whole different set of facial tics, ear tics, all sorts of other stupid and painful ear popping and snorting things. lots of clicking and throat clearing and all sorts of other crap… even if it’s not =that= kind of sick. 

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…