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::

There is more stupidity and ignorance in the universe than hydrogen … and it was all in one room with me….


Well, if you read my Facebook, you already heard about this … or at least part of it. Maybe some of you even know that I potentially have a new job! Very, very excited over it. So, after a million interviews and other things, we did the pre-employment paperwork last weekend and I made the appointment for my physical and evaluations and stuff… and my TB/PPD tests. 

I had a lot of choices on where to go, but there is a clinic across the street from my Neurologists office and the gigantic hospital that I always go to… So I thought this was going to be great. Well, after leaving in plenty of time … there was no parking… The parking deck was falling down so it was closed … and me ( with my ‘moves like Jagger’)  so I truly had to walk 1/4 of a mile to get there (with how I walk and how bad I shake…that was awesome)… so, I was suppose to be in building 43, but I had to park down by building 57!!!!!!!!!!! I got there… I check in… the lady at the desk was beyond amazing… and I answer the pre-screen questions and stuff… get my paperwork … sit down back in the waiting room…

So… by the way… I AM ticcing pretty badly at this point and shaking, and my shoulders are jerking and I have lots of vocals too… the woman just tried to make sure that I was ok and had anything I need. It was really sweet.  So, like I started to say, I take my paperwork and sit down in a seat against the wall … there are other people spread out all in the waiting room. I picked where to sit because my Echolalia was pretty bad, and I wanted space.

 With the beeping of the construction equipment outside, the squeaky hinges on the door, the sirens on the television… and of course I was jerking and shaking and stuff…I kinda felt like a wreck and was ready to have all this over with. 

OH…and the TV had on the whole thing with the DC naval shooter… But I sit there with my paperwork, and listen to this “forensic Psychologist” and the interviewer talk about the problems with mental health awareness and health care… and thinking that they’re all full of shit … Even the women on television was saying how she doesn’t want to get too close to people like that. I stopped paying attention. The man directly across from me, on the opposite side of this GIGANTIC waiting room was giving me the hairy eyeball … 

 

…at this point I’m just on my tablet and MINDING MY OWN BUSINESS

…and one by one everyone in the waiting room moved to the FAR SIDE OF THE ROOM AWAY FROM ME….

 

so, the couple, the solo guy and the two young ones start talking… and are all talking about how “they shouldn’t let people like HIM and the girl over there” out without someone watching them … That’s how people get killed. 

So, of course I had a silent fit… I sat there… ticcing… and feeling awful for myself… and like I’m a freak…and starting to get really angry…mental illness isn’t the problem with me, I have many things wrong with me. I have psychiatric issues to go along with my neurological problems …but dear lord if I could  have opened my mouth and said ITS IDIOTS LIKE YOU… LIKE YOU WHO MAKE IT SO IMPOSSIBLE for people like me or others not only to get help, but to be able to open their mouths and say “excuse me, I have a medical condition…” and just be nodded at, and then ignored like everyone else. Just imagine, if you’re annoyed by me and it was only 15-20 minutes… imagine how I feel living like this every day for TWENTY YEARS

The nurse at the reception desk came out and had a fit about it. Everyone being closed minded and STUPID and RUDE… The nurse  back over to me and said they’d take me back right now … I’d have to wait for a while longer for my appointment to begin but she’s not going to stand for people being disrespectful for no reason, in a hospital setting…and that I’m so adorable…Oh, but the hospital has Wifi… so I was mooching off my neurologist office to play candy crush (Level 208 baby!!)

The doctor and I talked for a while later… she took all my information and they want me to come over for grand rounds to do a presentation on Tourette’s and Dystonia. They loved how informative I was and how I had no problem articulating it in an adult, professional and medical format… and that I knew the important things and where to get the study information. So, that’ll be cool when it gets set up. Oh, I passed the physical… and the activity test to make sure i can safely do stuff. But, where they do the test for the physical stuff is in the rehab facility… no one cared. Patients and everyone was just like … no problem, whatever. 

So, other than the bullshit… Things were ok. OH, and when I got home… this is what I found in the mailbox from DSW shoes! OH, and a very sweet note! Image 

 

and my bunnykins had his appointment today for all the stuff I’ve not been talking about. HE IS FINE… they didn’t find any bad stuff in him. Poor thing isn’t feeling well now but he’s healthy … that’s all that matters! 

 

Laundry is done … dishes are done … now i have to do coupons and a few other things… Life is pretty good… oh, and I need medication… lots of it..