7 years later...and still a twitchy bundle of fun!

It's hard to believe that it's actually been 7 long years since my last post on this here wreck of a blog. 

But have no fear! In that time, I can confidently assure you that I've continued to be charming, wonderful, twitchy, witty, and oh! so-humble, while excelling at using my extremely relatable, self-deprecating humor to continue my life's journey as a Tourette-a-saurus-wreck-in-progress.

As you may already know, I initially created this blog as an outlet for the many trials, tribulations, and learning experiences that I've encountered while forging ahead in my not so typical life. Then I thought to myself, "Hey! while I'm in the process of sharing my personal metaphorical bumps & bruises in this online personal 'safe space', maybe I'll be able to enlighten - or entertain, which is certainly more likely - others with my totally rad personality and wit, despite my unexpected and sometimes unsightly moments!"

I'd like to start this long overdue entry by sharing with you a conversation that was had between my therapist and I about five or six months ago. I was at my appointment with her, having difficulty trying to express how weird it is to be considered 'normal' (whatever the hell that is) because of what I look and typically sound like on the outside, my book cover, if you will. Especially because I know what's going on inside.

When someone, usually in passing, attempts to make light, polite conversation asks "Hey, how are you?", they generally don't want the REAL answer. Usually they are looking for the autopilot response of "I'm good. How are you?" ...yeah, free tip to y'all - I don't do autopilot very well. In fact, filters aren't really my thing.

I mean, I'm pretty talented at putting on a facade, Oscar worthy level talent in fact, but that doesn't mean I enjoy it. It just means that I recognize and respect 'social norms', but I don't necessarily agree with them. Seriously though, if you don't want to know what's REALLY up, you probably shouldn't ask. One of these days I may just answer truthfully. Eek! Here is an unsolicited tip: Just say "Hi there, have a great day!"

Then I can easily just say "You too!" 

I mean, it's pretty hard to express to people the common but also fairly exhuasting, patience testing, interesting, challenging, painful, unique, and sometimes downright bizarre situations I find myself in my a day to day existence. To compound that, the myriad of 'colorful' emotions I feel on a daily, sometimes hourly, often minute to minute basis, could potentially make people run for the hills as fast as Usain Bolt, were I to try and express said feelings. And the physical challenges that I continuously endure, some days better than others, is a crap shoot. Probably better not to ask how I'm doing, you know, on the off chance that I answer honestly. Haha

As a commonly used meme says perfectly: 

"Ain't nobody got time for that!!"

I explained to her that often people look at me and listen, and see just your average young woman trying to navigate the peaks and valleys of typical everyday life. We talked about how very often people assume that I am a completely 'normal', functional member of society and don't understand why I'm on disability, the challenges I face in the common workplace, why I have so many different doctor appointments, why I'm so focused on and talk about self-care and personal wellness so often, or why I advocate so fervently for people with developmental or behavioral health disabilities.

It was during this session she busted out a term called 'apparent competence'.

Huh?

I remember thinking "that's a 'thing'?"

I mean, I got it right away, the meaning.

The phrase is simply stated and easily comprehended. I just didn't know the concept existed. But it does, and I'd been experiencing it since childhood! It kind of felt good to put a name with what's going on in that area of my life: how others perceive me versus how I feel.

If I think back, I find that all of my life, I've been experiencing this phenomenon called 'apparent competence'. That although I generally look very put together on the outside (nevermind those days I go to the grocery store, hair in a REALLY messy, greasy topknot, zits rockin' on my face, teeth unbrushed, deodorant MIA, braless with a huge bright green parka zipped up to my neck, snow boots unzipped with my pink Tinkerbell pajama bottoms tucked into the sides of my boots just enough so they don't drag on the ground - all this for a marvelous, delicious, decadent 1/2 gallon of peanut butter ice cream), subconsciously intellectualize and over articulate when I speak, consider myself pretty well educated on the topics of which I choose to speak and ask intelligent, appropriate questions on those subjects I'd like to learn more about; in essence, sounding mostly like your 'normal' everyday person. 

However, whilst I look quite seemingly 'normal' on the outside, the people looking at or conversing with me can't see the busy brained, abstract, oddly patterned or completely disorganized "Mess-terpiece" going on inside of me. My thoughts and feelings, a continuous roller coaster ride of emotions with an awesomely wicked ability to over-process situations, perseverate, and assess possible outcomes through projection, transference, justification, denial, etc. All while experiencing unapologeticically strong feelings of anxiousness, excitement, empathy, happiness, sadness, fear or impending doom for myself or those around me. I also possess a built in magic sponge to assist me in my unhealthy habitual absorption of other people's problems to distract me from my own 'stuff'; this whole cacophony of chaos within just a few seconds. Pretty talented, huh? I'm my own twisty-turny, twitchy, mystery fun-house of endless surprises at the turn of every corner! Fun!

But on the outside, I'm cool as a cucumber.

Never judge this book by her cover.

See? Told you. Oscar worthy!! Mic drop.

If you've made it this far, you clearly deserve credit for following along - or at least trying to. Thank you for making the time to stick around. And of course, there is an answer to the aforementioned meme.

You took a little extra time to hear me today and said... "Ooh, I got time for that!" 

Much appreciated. Though I don't have a picture of rock hard abs or cleavage to satiate the senses as is commonly done in conjunction with 'said' meme.

I do, however hope a little gained insight or comfort in possibly feeling not-so-alone if you're going through anything similar to I am is a nice consolation prize. *hugs*

I'd like to end this entry with a thought I've been kicking around ever so imaginitively...

If I were to create an original painted Mess-terpiece mash-up to express myself using a hodge-podge of styles of art made known by world renowned artists, I'd probably describe it somewhat like this...

A canvas base of Jackson Pollock's signature theme - methodically but seemingly hasty spattered vivid colors on a giant blank white canvas, sometimes monochromatic, other times a flurry of different, seemingly incompatible colors, creating a web-like base of a beautifully meticulous mess. This expertly choreographed nonsensical appearing base accompanied by overlaying pieces of compulsively perfect angles, lines, and color scheming like those of Wassily Kandinsky's obsessive and strict geometric juxtaposed shapes, patterns and colors; perfectly abstract enough to make no sense and perfect sense, all at once; finished with a wistfully imaginative flavor of Salvador Dali's softer, curved lines, inspired by intentional wandering, purposefully losing the viewer in surrealistic, outside-the-box interpretations of reality, captured by exaggerated elements of my surrounding environment with an emphasis on structural living concepts such as time, like Dali's clocks, melting all around me, crutches that imply my constant desire for some support and normalcy, yet water so blue that it quells any anxious impulsivity or need for rescue from the Pollock-like base underneath; a tranquil sea of aquamarine that softens the obsessively compulsive, perfectly placed and plotted pointed shapes and lines of Kandinsky's influence. A jumbled piece of me, expertly executed and expressed on a tightly stretched, glued and lacquered base, assembled on a reinforced bare pine frame underneath the cloth, and over my completed Mess-terpiece, carefully placed and fitted in a pristine, espresso colored, perfectly carpentered, hardwood frame with an enormous sheet of clean, reflective glass, covering and protecting the heart of this piece, that delicate and personally engineered painted piece of canvas inside, from any unwelcome outside elements. Protection from appearing incompetent.

This is me.

Apparently Competent.

"Put together" on the outside.

A cacophony of chaos on the inside.

A funhouse of twisty turns & twitches.

A uniquely challenging Mess-terpiece.

A Tourette-a-saurus-wreck-in-progress.

ADHD Poster Child

Hey There Wreckers!!

I'm giggling as I write this, thinking of my friends reading this and sighing, "finally Joelle! Jeez! Took ya long enough!" ha ha
But as I giggle and write, I am also reminded of how awesome it is that these friends and family are so encouraging and persistent in getting me back into this!

So a big warm shout out and Thank You to all of you! I love you all!

When I think of getting back into writing my blog, the old familiar thought "where to begin" comes to mind. I have endured so many hills and valleys the past several months, and its hard to decide exactly where I should begin sharing my adventures as of late.
The people that know me well, I am quite sure, will confidently tell you that I am one of the THE most tangential people they have ever conversed with. Between my mind racing at a million thoughts per second and my mouth unable to keep up with my brain, my confessed inability to organize and/or filter my thoughts, and my innate ability to link almost any subject to another because of my random, fleeting, ADHD-poster-child mentality, I am most sure that finding a starting place for me, is like finding a needle in a haystack. I'm actually thinking now that I may have lost several of you just back in that last paragraph??

But alas. So it begins...

Welcome to my Blog! ...again.

Today I am at my family cottage. I am sitting at the dining room table writing this. Its pretty damn uncomfortable on these wooden chairs, and the angle at which I am leaning and typing is not exactly what one would consider ergonomically correct. Of course, I'm guessing that if I was sitting in the world's most comfy chair, I would still have a gripe or two. Not about the chair, but about one of the many 'ass aches' I always have. Eh, such is life. A constant 'ass ache.' ha ha

I'm laughing about it. I'm not complaining. Simply making light of the 'situation' that is my life.

Hmmmm... Let's see, where, oh where, did I leave you folks salivating for more tourette-a-saurus-wreckedness?

Since I simply have no recollection, I will just begin where I see fit.
And this is my blog.
So I can do that.
And I will.

'ADHD Poster Child' Side note: I painted my fingernails into little pink ladybugs with googly eyes. They are keeping me pretty entertained as I'm typing. In case you didn't know, Lady Bugs mean good luck; and if I do say so myself, I could probably use some! Heck, We all can!
Of course, if you really know me, you would realize that if they were in fact REAL lady bugs, they'd be mushed already and I'd be running in the opposite direction for fear of being attacked by one of these vicious devil red man eating spotted flying 1/2 inch big monster creatures!

Yeeea. I don't like things that fly.
Quirky? Yes. Funny? (to you) Yes. Scary? (to me) Yes.
This encompasses butterflies, moths, dragonflies, flying squirrels and fish (lol), birds, bees, flies, pretty much anything with wings that can hover or land on you. Squish. Squash.
Now, bring on some spiders?? I will be your SUPER HERO! They don't fly. They are no match for my fearless spider squashing skills.
8 legs? No prob. 2 wings? = Me + Flinstone Feet.

If I still have your attention after that my friend, you are a dedicated reader and for that you get bonus points! Actually - there are no bonus points; but you can give yourself a pat on the back.
Or go on, brush your shoulder off. Whatever your style may be homey.

This morning my tics are not great, not terrible though. My right shoulder is sore. This is about the time during my Botox rotation when my shoulder starts to ache a lot. Happens every time. Sucks every time. Except this time, it sucks just slightly more.

See, at the end of March, the 31st to be exact, I went ahead and broke my leg by falling down my bottom 2 stairs. Not an exciting story, I know. But boy was it a doozie! I broke 2 bones, tore 2 ligaments, and sprained it. The first time I had ever broken myself - and hopefully the last.
So, needless to say, I was (and still am) on crutches.
Well, that put quite a 'kink' in my tri-monthly Botox regimen. And in my muscles. All of 'em.

I mean, think about it... I break my leg. I'm on crutches. I start using muscles I haven't used in years to maneuver around on said crutches. I am achy, and sore, and whine like a little baby.
I get Botox injections for my Tourette's in my upper right extremity (neck, back, shoulder, pec). I'm still on crutches. To walk with crutches properly, a person must use their neck, back, shoulder, pec... Hmmm, I already see a problem ensuing. The Botox starts working. My right arm gradually gets weaker. My left arm overcompensates. My right arm is doing more than it should by even trying to use the crutches. My whole body is thrown off kilter from favoring my right side, certain positions, and constantly leaning to my right for comfort. I sleep on my right side every night because of my broken foot and my tics. I toss and turn constantly with knots in my back and side and hips from my whole alignment being, well, OUT of alignment.

Then, I wake up every morning with a stiff neck, back, and shoulder. Only to start this day long, grueling process of movement and/or non-movement, all over again. A constant, unconscious negotiation of my body parts; an internal struggle between how they want to be for just a moment's comfort, as opposed to how they need to be for the future structural health of my body. And so it repeats, day after day. Oh Joy!

Could be worse. Could be a lot worse. But if I'm being pessimistically realistic, I hate it, all of it, and I want it gone.

-----------------------------------------------------------------------

Recently I've found some stability in my life as far as Dr's and therapists go. But, only with a great amount of struggle, knowledge, persistence, and advocacy -self and otherwise- did this take shape.
I'd like to title this excerpt from my blog as follows:



"A Personalized Story of 'OUR' Broken Healthcare system :
A Consumer/Provider perspective."



to be continued....
I know, such a tease. Deal with it. :o)

I must mingle with the family folk. After all, I AM at the cottage, and this IS a vacation!

Until next time -

Tourette-a-saurus-wreck - OUT!

Woke up on time today. Managed to still somehow be 10 minutes late to get to my cousin's house. Still an improvement from Friday. Was 20 mins late Friday. Felt really bad about it too. But as always, my tardiness is once again seen as deliberate defiance. If only they knew.

The icing on the cake this morning (its different every day) was while I was at the kitchen counter getting my meds out this morning, a sampling of pills that would put an 86 year old woman to shame. My morning routine (placing my many Rx bottles on the counter, lined up, with the pills perfectly in alignment with each corresponding bottle, to make sure I take them all as directed, and actually remember taking them) was completely disrupted by a 'simple task' that my father requested of me. He asked me if I could "move down about a foot?" in that irritated grumpy, morning voice that he so frequently shares with my mother and I (much to our dismay) at that hour of the morning. Frustrated, since my whole set up needed to be moved, I picked up a bottle of my medicine. But lo and behold, I started ticking. Darn it, I thought. I could see his lips pursing and his furled brow. An obvious reaction to the amount of time I was taking, due to my need to tic, to move my medicine, so that he had room to read his newspaper. He, however, would not say anything about the amount of time it took to let my tics out for that moment. On the exterior, he was visibly annoyed; but on the interior, he was empathetic, and would never say something as insensitive as "can't you just stop doing that and move already?!!" So while I took my 30 or so seconds of flailing my arm around, squeaking, and some weird stretching tic that has recently developed (yeah, they do that), he kept silent. And when I was done, I moved everything like he asked. Then set it up again, just like it was...just like it is, every morning.

That 'simple task' that my father had asked of me?? Well, as a general rule, most tasks are not so simple for me.

Most are accompanied by some sort of obsessive thought, compulsive checking and/or re-checking, usually some sort of concern as well. All are intrusive, unpleasant, take extra time, stressful;
and a normal occurrence for me.

Along with those constant thoughts and behaviors, come more tics. And when I tic more, several things also happen.

Stiffness. I don't sleep well. Actually, let me rephrase that. My sleep patterns are horrific. I often wake up in the middle of the night, stiff from the position I am laying in, or sore from laying on one side, my right, to try to control my ticking so I can sleep. Sometimes my neck decides that it has had enough for the day and that it is going on strike for the rest of the night, hence weakness and extra needed neck support. And the mornings are always unpleasant. Every morning, I feel like I've been hit by a truck. I can never get comfortable, and when I find a semi-decent sleeping position, after about 10 minutes, I get too sore and stiff again, and need to change my conorted position to something more tolerable, for the time being. Hence, due to my body's complete exhaustion by 6am, I sleep through all of my alarm clocks, every morning.
Pain and soreness from repeating my tics over and over and over and over and over and over and over....
you get the picture...all day, every day.
I also get exhausted. Think about it. I am constantly moving, all day long. If its not one tic, its another. Try it. Sit and lightly tap your foot for a half hour. Is your foot, or maybe your ankle or calf muscle, tired? Well double, even triple, the intensity, and continue to do it all day long, not just for 30 minutes. Oh, and add some more motions and some sounds to it. Go ahead and quietly clear your throat and about 2 to 3 times a minute blink one eye with a squeeze. Don't forget to keep tapping your foot...all day. Let me know how you're feeling after a few hours.

I have several tics that tend to migrate and as some get worse, others may improve. They are as follows:

Vocal tics:
*Squeaking. No, thats not a mouse you hear. Its me.
*Glutteral sniffling in the back of my throat at the base of my nasal passage way.

Motor tics:
*Stretching and flexing my jaw muscles and forcefully sliding my jaw to the right of my face, stretching out my neck and shoulder muscles (mainly the platisma), often popping my jaw joint, and tightly winking my eye, due to the muscle strain in that area of the face.
*Shaking my left leg up near my hip area. Pretty unnoticeable unless I am trying to dance to any sort of choreography. haha Sets me a little off from the rest of the ensemble, needless to say.
*Flailing, stretching, throwing, twisting, thrusting, and whipping my right arm into the air. Generally, it looks like I am trying to beat up the O2 around me, maybe an imaginary friend? Just kidding. I usually advise people not to sit on my right at the dinner table, or in the car, or anywhere for that matter. I don't want to be responsible for knocking anyone out. Pretty much, I will contort my arm into any position that will relieve the tension or impulse for my need to tic. This being my most severe tic, I usually use anywhere from 2 or 3 muscles when I tic, to 5 or 6, maybe more, as it progresses.
My complex motor tic. My worst enemy, but my closest familiarity.

Today, I am tired and sore. This feeling tends to happen a lot. And my tics are pretty bad today. Probably from the pumpkin chocolate chip pancakes my friend made me this morning. I didn't think about the chocolate while I was eating them. Of course, now, I am wishing I had skipped the chocolate chip pancakes, and gone straight for the Special K cereal.
That's another not so fantastic rule I must live by. No Caffeine. No stimulants. At all.
No chocolate. No Sweet Tea. No regular coffee or hot tea. No Hot chocolate. No Red Bull or any other energy drinks. No Diet Pills. I even have to stay away from certain vitamin waters that have taurine, guarine, or those other new fangled ingredients that pretty much mean the same thing as caffeine. If I am going to a dinner party, get together, or any other event, I always make sure that there is caffeine free soda or bottled water available. Those are safe.
If I have any of these or other stimulants, I am like the energizer bunny of tics.

My friends and I joke that I am "Twitchie-Mac-Twitcherton."
Its endearing the way they poke fun with me. I would be offended, however these are my friends.
The people that, despite my squeaky, sniffly, twitching and flailing of body parts, still love me. They still chose to be my friends. They still hang out with me...IN PUBLIC! haha And they actually admit that I am their friend. Often telling people what a wonderful person I am.
They are the wonderful ones!

Speaking of the wonderful ones, I am getting a call from one of them.
I shall return again soon!

Until then,

Twitch-fully Yours,

Joelle

first post

My brother Ben helped me create this....more to come!