Wednesday, September 25, 2013

so, yeah....the vest works....

no shit.

it really does.  i mean, i aint running...i aint jogging....

no, alas.... my victories and gains from this device are more along the lines of:

1.  i can stand without falling.
2. i can raise my arms above my head, while standing, and do not face plant.
3. i can walk, awkwardly, without a can for short distances...oh, and did i mention? ...without falling.
4. i can march in place.  (yeah, my legs were just a shocked as i was to be marching in place)

theres more, but i am over the whole listing thing.  i am just gonna spew it out.

so, we arrive (after 7 fucking long hours in a godddamn prius) my legs and body were sooo cramped, very tight leg muscles. ugh. tin man needs the oil can....
i get in the room with Craig for the assessment.  I have to demonstrate how i stand from sitting, how i stand, how i walk, a little evoked potentials, etc.

then he tests the lumbar belt, and asks me to stand.  and honestly, even though while i was attempting to stand, as standing from sitting can be challenging...before i knew it, i was standing.  didnt use my hands, not at all.
Glenn was sitting there, and saying WOW....
so, he asked me to stand comfortably...try to look straight ahead, instead of at the floor....try not to hold onto anything....
while i couldnt stand straight, look straight ahead without holding on to something, what i COULD do was stand straighter, with less visible spasticity.  nice.

then, he put the vest on me, asked me to stand, then proceeded in pushing me in different directions to test balance. at one point, i came crashing face first into his glasses. yahoo.

then, he started weighting me. trying small weights in strategic points on my shoulders, chest, torso, low back, etc...

all the while pushing me.

...finally, he could push me, and i could catch myself and regain my balance. yep. no fucking shit.

and, i talked to the guy who made my vest...i already have my own vest.

I saw craig for the assessment on tuesday, he ordered my vest, and we went to pick it up that following saturday.  AND, craig was nice enough to meet us half way....

uber nice.

so, summary:

while walking is still very difficult, it is easier and less scary.  I am very anxious about falling, and this vest gives me a feeling of security. I feel much more centered.
I have wicked bad spasticity, drop foot, and numb feet...all of which are not aided with the vest...but, and this is a big BUT, i am seriosuly hopeful that with could become even easier to walk.

I figure, like crutches. when you first break a leg and get crutches, you can look like an idiot using them...and they are awkward, and foriegn....
but, after a month or so, you are a pro....a fucking crutch master....they become an extension of you....

so, hopefully, in a month or so....i, too will be a vest master.  i wont even have to go and train in a swamp with a little green guy...

well....i am not succinct, and i wander around in, hopefully you can understand my jumbled crap blog post.

the vest shows marked improvement in my mobility....

there. the the point.

oh, p.s.

i played mother fucking CROQUET last friday!!!!!!!!!!!!!!!!!!

i know, right?  (it probably wasnt pretty or graceful...but i did it.  came in second because my brother had some hidden croquet skill.......................  two games, actually.

if anyone reads my shitty little neglected should get assessed for the vest.

Thursday, September 12, 2013

To blog or not to blog

Obviously, to not much blog...

I did, however, want to post about something I usually am bereft of....

That would be 'hope'....

Sure, any cripple that has been ravagely fucked by multiple sclerosis can lament about a hope for the cure.  Well, duh.  My 'first star I see tonight' wish is always an MS cure.

This new hope I have has got me all bunged up.  I am a pragmatic chick.... This is the way it is...I see it for what It is.

1. I have a chronic illness that is destroying protective sheathing around the nerves in my brain
2. This myelin destruction has seriously fucked my body up, robbed me, jypped me, screwed me out of a 'normal' life...
3. Without a wall, an arm, or a cane...I will fall on my face...hey, sometimes I even fall on my face with those things.

(there is plenty of other shit to compile on the above list, but I am abandoning that ship) its depressing...

So, fuck it. Let's talk about HOPE.

Currently, hope is blooming inside me in the form of a counter balancing weighted vest.  A physical therapist designed this shit a few years ago, and so far, they have an 80% success rate with improving balance.  For ms patients, but not limited to.  In fact, they utilize this vest for patients with Parkinson's, vertigo, old age, and ataxia.  (fuck ataxia...I looked that up, and what a horrible, shitty disease.)  life is hard enough, but then our brains freak the fuck out and develope some seriously debilitating shit.

So, after I watched several YouTube videos of assessments, before and after, patient testimonials, etc...I contacted them.  I am going to syracus, NY. To a PT to be assessed on the 17th.  Let's just say, fingers cross.  Cos, if I am in that 20%...I am gonna be PISSED.

So, there's my new hope.  It has changed my mood.  Not that I am a sad sack...I am actually pretty chill, and only have moments of super sucky self loathing.  I have always been mercurial, so...I ain't giving my moodiness to MS, too.  It has already laid claim to a lot.

Anyway..I wasn't gonna blog post about it until after, but...hey....I did.

It's called.balancewear vest, by motion theraputics.  Check this shit out... If I got my balance back, would change my life.

Not to mention, while I can't remember the medical name....the vest can cause 'carry over', meaning that after you take the vest off, your body still acts in a way that it did when the vest was on.
Re-mapping...kinda.  Artificial center of balance.  Fucking counter weighting.  So simple.

I am excited, and will update after my appointment.  Neato

Monday, February 11, 2013

It takes all kinds

To make the world go round.

Right?  Yeah..... I am really not much of a blogger (no shit), but I wanted to write about something that has been on my mind.  My wee little pea brain mind.  After many years of meeting people with MS online (and in today's words that translates to having NEVER have met them in real life....), I have noticed a common thread.  Not with all of them mind you. And some are like the squeaky wheel, or the rotten apple in a terms of what I am about to address.

I touched on it before, but I a different manner.  It was a different topic, but had a sliver of this piercing the heart of it.

Guess I will jump right in. ...oh, and this could be for any chronic illness, disease, what fucking could apply.  I am talking about the THEN and the NOW.  Some people, on blogs I have read that have MS, have brought me to tears. Like their words have given me that tight throat feeling. That rush of emotion. That empathy.  And a couple others, have left me feeling like 'you are a fuck face, and it wouldn't matter if you had MS or not, because you around still be a fuck face!"

Misery loves company...I suppose I have heard. And it rings true, man.  Some people are so pathetic. Just fucking pathetic. Miserable. No matter what happens, they are pathetic. Pious. You name it. And seriously....MS does not exclude you from fucking life. Life.  You are NOT exempt.  You don't get a get out of jail free card because you have an illness that millions of others suffer or deal with....tons of people get diagnosed every fucking day. A lot of those poor bastards have kids, families, people that they truly care about, and that care about them.....and you don't get to treat people like shit just because of you disease. You are not the only fucking one. And you have no right to paper your cesspool of a life and garner sympathy from strangers.

Regardless of this illness you still gotta put forth the effort. You still have to either forgive or forget or tell them to fuck off and be done with it.  No matter what, you are unhappy. You sorry ass motherfucker.  You poor thing.  Is that what does it for you?  You are equally culpable.  Big deal if you have MS....ot fucking lupus, or chroma.....big fucking deal.  Meds and doctors, and insurance, or no insurance, and rent or mortgage, or homeless....whatfucking's the way it is.  Shit or get off the pot.  Stop being such a fuck face.  It's either this or it's that.  That was then, man.....this is now.  It was never easy......walking or rolling.  Pain free or painful.

....and I don't proof read. So typos are a dime a dozen.....

But that's what I wanted to say.

Thursday, January 24, 2013

colder than a witchs tit....

This is bad-ass pigeon.  He is actually much cuter than this in real life...not an easy animal to get a photo of....

Winter here....what a treat. 

Rommel & cute its fucken sickening. bromantic, big time.

Tuesday, January 8, 2013

If a girl falls in the woods....

I was going to try to get all witty with a word play there, but I didn't.....

So, I have news....good-ish...for me.

Having 60+ acres of land, in the winter, in Vermont.....pretty daunting for a cripple, eh?  Holy hell, yes.  But, I had mentioned to y'all about my super bad ass four wheeler....

(this four wheeler is so seriously bad ass...and my dilemma was which celtics jersey number would I paint on it?  #5?  Cos similar to KG this is an incredible machine...a beast.  Or, #9?  Because of how fast it goes while weaving in and around obstacles....... Decided just to paint a shamrock on it. Yeah, I am a heinsohn prodigy.  Celtics bias coursing through the green blood flowing through my veins....blah blah blah)

Ok.  So, since we haven't bought chains for its tires yet.... But wanted to venture into the woods and gawk at the beauty under a blanket of snow....I thought "voila"... Years ago, when I was fully mobile, I had snow shoes because I was a go-go-go person.... Snow, sleet, sweltering long as it was outside.  Anyhow, I have the I figure, fuck it, why not try. I didn't have high hopes.  I really didn't.  About a foot of powdery snow....and a cripple with snow shoe poles.  In the woods, dude.

I got Rommel all set up in his nice bright yellow tshirt, because mother fuckers around here have a penchant for shooting people's German shepherds because they all 'look like coyotes'.  It just happened again recently a couple towns over. Sad.  Some hunter shot some woman's four year old German shepherd in HER YARD!  Yeah.  I don't trust anyone, so poor Rommel has to sport a tshirt until I get his OSHA orange dog safety vest ordered.   And, our land is posted....but, that didn't stop a hunter from shooting a doe out back and then dragging it to the road via our pseudo front yard. (we have a huge lawn a football, yeah, basically our front yard.  Whatever....I digress.

Back to the cripple with snow shoe poles and a foot of snow.  I cannot walk on my own.  I cannot stand on my own.  I cannot balance at all, and if I try to stand I end up bent at the hips to maintain any type of balance to stay on my feet.  Figured the poles would be good.  We started our journey across the front yard, to the wood line, and then there is a bit of a hill, and once up it, there is a flattish trail that wraps around and finally comes around way behind the house.  That was my goal.  Just to do that little bit. Glenn walks it in about ten minutes. Ten minutes. Took me an hour.  But, I fucking did it.  I was coasting on fumes for the final stretch.  How victorious.  I fell, a few times.  Rommel walking over and looking at me like 'wtf are you doing?'.

I could elaborate on how difficult is was.  I could get dramatic and dish on my internal dialogue.  I could get poetic, but I won't.  I try to be succinct...but meander.

Bottom line, I did it.  I had promised myself that I would try, with very little expectations.  That if I couldn't, that I wouldn't verbally vivisect myself.  I promised I wouldn't be in denial about it. I wouldn't cry......I promised myself I would concede and move on.  But, I did it.  A ten minute walk in an hour.  Thank you snow shoe poles..... I kinda feel human.  I got to do something normal...ish.

Wednesday, January 2, 2013

Keep it real....fake

I don't know about you and holidays.....but after the first of the year I leave the season feeling muddied, dirtied....a fucking hypocrite.

Family, significant others family.  People.  People that I would, under any other circumstances, never spend a moment with.  Don't be might offend them, hurt their feelings, crush their dreams, decimate their delusion, cause them to feel vulnerable, pop their fucking bubble....etc.
I seriously feel like I lived a Facebook life this past know? I.e. there wasn't an 'unlike' button.
Nope.  Don't disagree.....even if they talk some seriously deranged shit.  Do not take a side, of ANY fucking perspective, lest you wanna leave someone feeling miffed up.
Christ.  I had a blowhard fundamentalist in my home going OFF about the evil of homosexuality and I could not have an opinion.  Guess what?  I was, for many years, in a relationship with a woman.

But, you gotta keep the peace.  You gotta keep your mouth shut.  You gotta save face. You gotta.

I walk away from this past holiday season feeling like a phony. Feeling like I burned the wick at both ends. Feeling like I lost part of myself. Feeling like a sellout.  Because I had to keep hitting the real life 'like' button. What a fucking crock.  Am I some sociopath because I have an emphirical opinion?  Am I a nut job troublemaker because I am pragmatic?

No.  I am a self sellout because I smiled at those people.  I spread my integrity thin because I grit my teeth and left the room.

I never get the warm fuzzier.  I will never win an academy award....but I still feel like a monumental piece of shit.  Nothing is worse than hating your own reflection.  Interpersonal relationship dynamics.  Relationship diplomacy.   That, I suppose, is a must.  (sigh).

It just has never been my way of thinking or conducting myself.  In my life, I have told my own mother my true feelings. I tell people when they piss me off, I have no problems engaging people.  I am blunt and honest.  But not this past weekend.....not for Christmas.  I wasn't any different than them.

I know....they say 'be the bigger person', 'kill them with kindness', etc.
But sorry, my pragmatism is showing when I don't believe you fight fire with fight it with water, man.  Cover it. Douse it. Extinguish it. Put it fucking out. asshole.