Saturday, June 25, 2016

Background Part 1: The Blog

If you've come to this page, chances are you know me somehow.  Most likely it's from Facebook, but it could also be from running, past employment, we could be family, went to church together at some point in time, or maybe went to school together.  Actually, even if you fall into the other categories, we're probably friends on Facebook since that's where I do the majority of my socializing.  In case you don't know me, you'll find out that I'm pretty blunt about everything, but I will frequently try to diffuse tension (my own or perceived from others) with humor.  Sometimes my posts will come across as almost purely informational with no humor.  Sometimes almostly purely with a jocular tone.  You never know what you'll get from me.  I never know what I'll get from me.

This, my inaugural post on this blog, is a background on this blog itself.  As time goes on, I'll give more information on some of the things I mention here.

Why I chose the title "The Trials and Tribulations of Twitchy the Runner"

First of all, let's address the "Twitchy" part.  I am in the process of getting diagnosed with what I am currently calling [an] "unspecified movement disorder."  That means that the two neurologists I have seen since the beginning of this year aren't entirely sure what to call it.  They do agree that it falls within a broad category called "extrapyramidal symptoms," or EPS.  (Here's the link to the Wiki on it, though you shouldn't trust Wiki for research purposes: https://en.wikipedia.org/wiki/Extrapyramidal_symptoms)  The short and dirty on EPSs and me: I was given a generic diagnosis of EPS when I started taking Geodon (ziprasidone) a few years back.  That was a known side-effect and I was given another medication (a beta blocker) to cover it up.  I wasn't "twitchy" as long as I took the beta blocker.  Fast forward two years.  I was having "twitching" so bad that it was interfering with my sleep and work and the beta blocker wasn't doing anything for it.  The psychiatrist who originally put me on the Geodon tried a couple of other medications, but they weren't doing anything for me.  He and I had a falling out and I started seeing a new psychiatrist.  I was given a diagnosis of "akathisia," which is a specific type of EPS.  I found out that it was caused by the Geodon and told my new psychiatrist I wanted off of it.  He was OK with that and I started weaning off of it, which took about 3 months because of how high of a dose of Geodon I was on at the time.  By the middle of December 2015 I was no longer taking Geodon, and a week later I stopped taking the beta blocker.  The "twitches" have just gotten worse since then and I found out through my own research that it is because the Geodon was masking them.  I have also since been diagnosed with "dystonia" and "dyskinesia," both specific types of EPSs, by the aforementioned two neurologists.  There are four specific types of EPSs.  If you've been following along in your playbook, you'll see I've been diagnosed with three of them.  The only one left that I haven't been diagnosed with is "parkinsonism," which is exactly what it sounds like: Parkinson's disease-like movements.

The only way to explain my presentation concisely is that I "twitch."  If you ask me to sit still, I can't.  The harder I try to sit still the more I "twitch."  Sometimes it's minor, like wiggling my fingers.  If I'm laying down my right leg jumps periodically.  But if I'm trying to do something purposeful with my hands, let's say typing, my presentation changes.  That's because purposeful movement requires the motor center of my brain to exert an exorbitant amount of control over my hands so it relinquishes control of the skeletal muscles in parts of the rest of my body.  For example, when I'm typing, certain muscles in my legs contract.  It's not painful.  Just annoying.  What is painful are the contractions in my left arm.  I am putting so much effort into controlling my fingers that I literally have to contract almost every muscle in my left arm.  Outside of typing, frequently my left wrist will flex when I'm trying to just keep it relaxed.  That actually caused carpal tunnel in my left wrist severe enough that three non-orthopedic doctors are insisting I see an orthopedic doctor to discuss carpal tunnel release surgery.  Oh, by the way, I've been left-handed for the last 32 years and now can hardly use the darn thing.

Moving right along, next we'll jump to the "the Runner" part of the title.  I have had to give up almost every hobby I've ever had since my "unspecified movement disorder" has gotten to the point it's at.  I AM a musician, but I can't play any instruments anymore.  I AM a crafter (cross-stitching and crocheting being my most prominent crafts), but if I were to try to do my favorite crafts I wouldn't get very far before getting frustrated by the overflow movements and/or pain.  I do still craft a little when I'm feeling up to it, but nothing that will be a long-term project.  One thing I can and DO do that requires very little use of the hands is running.  I started running toward the end of May or beginning of June of last year and made progress in it but had to stop toward the end of December because of a health problem caused by a medication I was taking.  I've been off that type of medication since April and started running again toward the end of May or beginning of June this year.  There will be stuff about running in this blog because that is one of the few ways I can identify myself other than my movement disorder right now.

Finally, I'll tell you what I mean by "The Trials and Tribulations."  I created this blog because I wanted some place to tell the world at large what I have been going through since I started having my "unspecified movement disorder" problem, including what caused it, some of the effect it's had on my everyday life, the process of diagnosis and application for disability, and so on.  But I will also be breaking up the sob story with positive posts about running (hopefully).  This is NOT a place for me to just complain, though.  That's what I have my friends, Facebook groups, and therapist for.

Parting thoughts for tonight...

I will probably be very sporadic in my posting on this blog because, as I've mentioned, typing is a challenge for me.  I do have voice typing capabilities on my phone, but don't like to use it much unless I'm home alone, plus it's a pain in the butt to edit when you're a grammar nut like me but your hands don't work so well.  I know there is software to do this on my computer, but it goes back to the not wanting to do it unless I'm home alone for psychological comfort reasons.  Generally, especially while I'm just giving background information, my posts will be typed up in the wee hours of the morning.  For some reason, my motor control is generally at its best around 1am, but that only lasts until my brain turns to mush and I have to sleep for 6+ hours.

Feel free to leave comments asking for definitions of anything, especially medical terminology, but I will warn you that I'm just going to give you a link to find more information on it.  You could just as easily Google it yourself and then you'd be saving a poor, ailing woman from having to do it for you.

Lastly, please realize that, though I intend for this blog to be mostly informative, I do still have an emotional disorder that causes me to lose my cool and put my emotions ahead of logic sometimes.  While I have improved at stepping away from the computer and thinking (and overthinking) about what I have typed before I press "send," I am far from perfect, even by human standards.  And if you come across me in person, please realize that one of the reasons I'm creating this blog is because I don't want to talk about this in person.  It makes me very emotional and I am uncomfortable with being emotional, especially in front of people.  If I bring it up it's not such a big deal for me, but I could very easily get to the point of not wanting to talk about it mid-discussion.

Thank you for being supportive of me during this process.  It really means a lot to me.

Much love,
"Twitchy" Tina

Update 7/10/16: I added my Facebook profile photo to this entry today because I'm changing it. I also added tags. That is all.

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