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 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::

2 thoughts on “Rude people … ignorant people … and hope for change

  1. Raven says:

    If it makes you feel better- my GP takes care of all my Rx’s as well. In the long run, it’s been easier for me. But my condition has had the same meds for 3 years now with little change- and if there is a change, they just call him and change it for me….like when I added the Metropolol.

    Also- my pharmecist is REALLY good. I like Rite Aid- they have a discount plan and they know I have memory problems so they call the doctor for me both when I’m out of refills and call ME when I’m about to run out and refill my stuff automatically.

    Sounds like we both had shitty days yesterday :-/ …. I was so stuck in flashbacks Ed didn’t understand I couldn’t just “Think logically”. Part of me could- but the rest of me was trapped in 2012. Brain diseases SUCK!!!!!!!

    • Yeah that does make me feel better, mine change a lot though … because we never know whats going to work and whats not. I don’t really know what I think when I get a script, then I have to go to the other one to get it changed… but it all gets faxed to GSK B2A so they can mail order it to me … the whole poor people prescription plan, you know?

      I only get my stuff when I can afford it, as I can afford it … so it’s usually one fill every 3/4 months.

      sorry your day was such balls yesterday too. I hate days like this … brain diseases suck

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