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… 

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Nastygrams.


Old post… started it on Friday and never got around to putting it here… so here it is.

That’s the word of the day… for the copious amounts of stupidity I feel like TinyDancer and I deal with on a daily basis… Today was a good one. Not only did I walk into my ALL TIME FAVORITE thing of 2 empty containers of Crisco and 6 milks that are open but only had about 2 cups between them all, the salt was empty again too. It’s just stupid. I mean, I know I should let it go but sometimes it seems impossible to me. It’s unprofessional!! I don’t want to lose my good habits that I had from all the other years I’ve been working in food, but sometimes I think the longer I stay here the worse my habits are going to get. It’s like … really have to TRY to remember all the stuff I learned… and even now I know that I’m slipping. It’s annoying. 

There are so many things I start to talk about, but then I get distracted and forget… or think I don’t want to talk about it because I don’t want to make trouble for myself in other areas of my life… but…I had to have all my medication increased 2 weeks ago … I’m back on 10mgs of Valium again… My Paxil went from 20mgs to 40mgs, and my Wellbutrin went from 100 to 300mgs. I’m probably going back on the Clonidine for the tics too, I was trying to be off of it but the vocals are going insane again, I hate that stuff and not just because I feel like it makes me really tired. I feel like it’s just a  drug for blinkers, (not like there’s a problem with blinkers in the general population but I don’t feel like they make anything for people like me)… For the good of everyone I should try to be completely tic medicated again… instead of just being… myself. 

And the other thing is that I got my final denial for the Deep Brain Stimulation surgery, they decided that it’s too risky on me because of my allergies to adhesives, antibiotics and metals. The chances of me having a fatal, or near fatal reaction is too high for anyone to want to risk opening me up and just dying on them without getting anything out of it. With it not being FDA approved, and without me having insurance (and not qualify for Obamacare, and I don’t know about that state insurance thing you told me about, I just remembered that… I should probably look at it… I don’t know if it can help though? Do you think?). I found that out on the … um… I think it was the 7th… and that was Temple/St.Luke’s. So, I guess I just have to shut up and deal with it from here on out. I understand, I really do. I’m allergic to the metal that is used to make the simulators… so it’s not worth it and I really don’t have a death wish… it’s just sad to me  They want to try one more set of drugs on me, but it’s for Huntington’s Chorea. I don’t know if I want to try it because it’s a really, really strong and scary drug. With my history of seizures, and depression and other stuff they’re not even sure that the drug company would even comp it to me. 

 

For disappointment, but not necessarily failure… just, disappointment.


The will of color loves how light spreads
Through its diffusions, making textures subtle,
Clothing a landscape in concealment
For color to keep its mysteries 
Hidden from the unready eye.

But the light that comes after rain
Is always fierce and clear,
And illuminates the face of everything
Through the transparency of rain.

Despite the initial darkening
This is the light that failure casts.
Beholden no more to the promise
Of what dream and work would bring.
It shows where roots have withered
And where the source has gone dry.
The light of failure has no mercy 
On the affections of the heart;
It emerges from beyond the personal
A wiry, forthright light that likes to see crevices 
Open in the shell of a controlled life.

Though cruel now, it serves a deeper kindness,
Wise to the larger call of growth.
It invites us to humility
And the painstaking work of acceptance.

So that one day we may look back
In recognition and appreciation
At the disappointment we now endure.

~ John O’Donohue
To Bless the Space Between Us: For Failure

 

is it envy, happiness, or human nature


I’m so happy for all my friends who either have gotten DBS, or are in the process of making this a reality. I know more then one amazing soul whose had this life changing procedure and is getting to make their dreams and goals start to come true. I look at the process, I look at all the doctor trips, the drugs that we have to try … the different levels of stress and incompetence that has to be endured just to try to get to this spot, to get to this opportunity to have our skulls drilled open and electrodes put in with the hopes that it makes us better instead of worse.

It’s pretty scary to think of the lengths that we’re willing to go to just to be able to feel a bit of relief…. to just get that sensation that everyone else has of normalcy. Something that is so overlooked and so… so misunderstood too…something that causes us to be worried when we go on public transport, feel paranoid just to get our driving license… It’s sad to know how many steps there are for the hope of improvement, but at the same time …the amount of change, and struggle there is… even with having this procedure… we know it’s never going to go away.

For a lot of us, there is too much damage, too many years of trauma, depression, and stress for me to even think that… well… that it even would work for someone like me. Even if the tics went away, would I even be able to have that ‘cure’ like someone whos been sick 1/4 of the time that I have? Would I be able to recover? Has this become such a deeply ingrained part of myself that the idea of trying to be … normal …? Is that even the right word for this… for me?

Can I accept the fact that all of my friends are going to get this cure, and I can only sit back, watch and be a good friend to them? Be supportive and listen to their feelings while I still have to hide my own … and try to keep a grip on myself and not ‘rain’ on their parade… or have to try to justify for myself that this is for the best. That there is a reason… but I can’t blame god, or ask about God and everything else when I know that’s not the problem …

 

Acceptance.


When I was a little girl, before we even knew what was wrong with me … I knew. I mean, how couldn’t I know? I just didn’t work like everyone else did. I had so many problems growing up, and I always just wanted that magic to take it away from me. I wanted to be happy in a way everyone else appeared to be. 

I understand why I was denied my DBS thing,  I understand that it’s for the best… the chances of me having an adverse reaction are so high that I don’t want to take that risk with my life. I do kinda like where things are going… things are getting better (slowly). I’m disappointed that I was hoping for something more then what I was offered, but I really like this doctor. She was honest with me… she looked me in the eye, and she told me the truth. 

When I was a little girl I BEGGED to get fixed, I remember trying to run to Robyns house (across the street, up the hill) and not being able to make it because my tics were so bad… and I’d just be kneeling there on the asphalt asking god/santa/anyone to take away “____” part that was making the trouble, and replace it with one that works so I could be normal. It never happened. Just like a few things I asked for at Christmas never came … I didn’t stop believing. I just realized that somethings are even too big for Santa, and God is busy running the universe to take care of a problem I had to learn to deal with myself. I was little, these disorders are brutal on someone little. Your brain is still developing and it’s hard to figure out what the hell is going on. 

At night I’d lay in my bed and look out the windows and beg to go home to a place that understood me, and cry a lot. Every single night and look at the lights of the airplanes and stuff flying by. Like… I’d think somehow that would be able to help me… 

I always wanted to try to fit in, and no matter what Dr. Seuss says, it’s still wrong… who wants to stand out like a sore thumb. And when you’re a kid, its even worse. But I’m a grown up now… and I can understand that sometimes the answers that you really want… and the things you think are going to be best… really could be the worst. I’m not heartbroken over the rejection for the DBS, I’m almost relieved. No,I am relieved. I think I can just try to move forward now instead of looking for an answer that’s not out there right now. 

 

…the question is, what do I wan to do with it… or about it…and thats not as scary to me as holding out hope for more disappointment. 

 

 

No one I’d rather be…


Since October I’ve been waiting for this next consult to see if DBS would be for me, I had that last appointment with Dr. Hou and it went really bad… Today I had the consult at St.Luke’s with Dr.D, and the surgeon, and the PA, and the med students and everyone else. I’ve been really looking forward to this thing but not in the way I would like … a birthday party. I’ve been looking forward to it with an eye towards disappointment, but hope for change.

 

Today I got told it’s not in my best interest to get DBS right now …I don’t feel like going into the details, Not because I think the people who read this don’t care, but because sometimes there are things in life that are just too private for me to whore out for the whole world. It’s not that I don’t want to talk about it, the people most important to me understand, and know, what they said. 

What I will give is that the doctors, the PA, the nurses, and the med students were very, very nice…. I was listened to, my experiences were respected… my symptoms were understood and I felt like she really heard me. The worst part of today was seeing that I gained 4 pounds since October… 

Anyway… My job is ok, I’ve had a lot of freak outs because of it for the past month… there are a lot of things that overwhelm me there and made me call the crisis line…the medication was upped, the exercise was increased… I’m trying to eat better (or eat, period) … oh, and sleep… which is something I should try to do eventually since I should be in sometime before 11 tonight… 

 

I’d like to say I’ll post more tomorrow, but I’m not making any promises… There’s new Dr.who legacy updates … and I should try to get some sleep… work is going to be long tomorrow, but I really like the girl I work with. Somday, maybe I’ll talk more about some of the stuff there… but since I don’t really want to get fired for opening my big mouth… maybe not.

 

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