“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::

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