The Denial Game

This will most likely sound like some sort of "self pitty" blog, but I don't care.  If I don't say it, it will stay in my head and if it stays in my head, it doesn't get said...

Denial is a strange thing...  It kreeps up on you without you even noticing it.  I keep on getting moments whereby I wonder to my self..."Is this diagnosis not maybe a silly mistake?  Is all my problems not maybe just all in my head?".  I was sitting at work, looking at my screen ...ironically enough, getting frustrated with palinopsic shadow's... and thinking, "Do I really need these wrist braces?  Do I really need to be working with a pen & tablet instead of a mouse or am I just being over dramatic?"  The next moment, as if to slap me in the face and wake me from this wishfull thinking, my wrist burns like someone left a lit cigarette under my skin and I drop my pen to grab on to my wrist...  For an instant, the answer was "No, it's not all in my head..."  but just as quickly as it came, it disappeared again.

Trying to see it in a defferent light, I start to wonder wether thinking this way is not maybe a slap in the face of the doctor(s) that diagnosed me and that in being in denial, means I don't trust their judgement.  The first doctor was a bit obscure, toying with the idea and not really sure what to make of it...also the one to try to get me out of his office as quick as possible as he had no idea how to help me (His words, not mine).  The second was a self-assured, no doubt in my mind, years of experience exclamation.  His words was clear and his voice still echo's in my head at nights... "Boy, you have Marfan's".  The way that he said it and the tone of his voice seemed to imply "What the heck are you doing here wasting my time.  Surely by now, someone must have diagnosed you and surely by now, you should be aware that your joints is not going to work properly."  The third and the deal clincher, was my cardiologist.  He listened to my chest for barely a second, said "Uhu...um...uhum", turned on his equipment and without hesitation positioned the wand at precisely the right place and directed my eyes to the screen, showing the way that my heart-valve would billow open allowing the blood to rush out in the wrong direction.

Yet still, I do not see it.  Even amidst daily reminders that my body does not work the way it should I struggle to get to terms with it.  I wake up and it sounds as if though I am breaking my whole body apart from the cracks and pops as I stretch.  I walk up a flight of stairs and I hear a "crunch", followed by seering pain in my knee, I sit for longer than a half an hour and my back aches like some boxer repeatedly punched me, I work on the computer without my braces on, or play piano and my wrist burns like it's on fire, I stand up too fast and my vision fades to black and I have to grab on to anything and everything to stop my tall body from toppling over, I stand next to a college while trying to help him and I need to grab a chair or I forgetfully go down on my hunches and can't get back up, I stand up from my chair and my sternum cracks so loudly everyone stops what theyre doing, I sit too long in traffic and my legs turn to jello, shaking uncontrolably and my knee hurting like I had just crashed it into an object, I arrive at home with a warm home cooked meal waiting for me but I can't eat, I hardly have an appetite and people think of me as a vampire as they never see me eating, yet my BMI is up to par, I have a million and one things I still want to do, but even on weekends, I just don't have the energy to do it ... and that is on a good day.

Doctors keep on noting my high arched palette, crowded teeth, poor eye-sight, flat feet, long spidery fingers that wraps around my own wrist with ease, bad knee placement, thin long arms and legs, and tall stature, yet I still doubt them.  My doctor screams at me when I dislocate a joint because he thinks I popped it back my self while it is actually just so lax, it went back on it's own but I almost believe that I had done it ... and against doctor's orders at that.  

How can my mind examine all of these signs every day and then jump to the conclusion that I am just a weak human being, with a weak mind, trying to blame my weakness on some random coincedence that my body looks, acts and feels like that of someone who has a disorder.  Is it even possible for someone to have all of these physical attributes thrown together and not be genetically flawed...  I don't know why I find it so difficult to swallow this.  I don't know why I keep bashing my head against it instead of just carrying on with my life.  I am in no danger of getting hurt or dying, so long as I don't pick up anything heavier than a baby, push a shopping cart, step sideways, try to open a Coke bottle, run, ride bike, jump, dance...

Am I really expected to believe that I WILL shorten my life by simply going to the gym and do any form of latteral exercise, cardio vascular exercise or exerting myself to a quarter of what the teenager next to me is.  Am I really expected to believe that the two malfunctioning heart-valves WILL cause blood pressure problems which WILL inflate my aorta if I don't take the medication that I have been without for almost 29 years...would I really have died by the time I was 30 or 40 if they had not identified these "abnormalities".

Am I really "sick"...

Am I just what I think I am...

Am I lost...

Am I making a mountain out of a molehill...  

Am I complaining over nothing even though I can't do archery, epee or ice-skating.  Am I annoying others by constantly pointing out my weaknesses when asked to perform a task I have been told could injure me.  Am I weak because I can't concentrate for long enough to hold one thaught in my head without forgetting it or that I am only able to work for a short time before my mind starts realing from fatigue or racing around from boredom.

Am I who I want to be...  

Can I be who I want to be...  

Is there someone I am supposed to be...

There is so many other people out there, that has lives much more complicated and much more painfull then mine.  What right do I have to feel in pain.  What right do I have to feel weak.  What right do I have to feel sad over things I can't do.  What right do I have to call my self, even in the slightest sense, disabled.  And just for a laugh, what right do I have in getting a traffic fine squashed because the officer saw my wrist braces and felt sorry for me.

Am I really in pain?  Isn't pain normal?  Doesn't everyone dislocate their knee every 4 or 5 months?

What is normal...

What am I...

What am I supposed to be...

What do I need...what do I allow my self to have...what am I allowed to be...

Is all of my blogs doomed to be rethorical questions...ones that stick in your mind like an ice-pick that you know you won't get an answer to yet you need one...you want one...you have to have one but still you know, there will never be one.

Why am I?

Timber!!!...Trees keep on falling on my head...Knocking things out of my memory...

Ok, so not on my head...but when you are a sleep, it feels like it.

This weekend, I am sound asleep ... for a change ... when the wind decides to pick up.  At first, it just gusts a little, screaming around corners, making treas creak and then, out of nowhere, it gives a massive heave of a gust...  Next thing you know, I hear a "Creak...SLAM! and then a Clang!, Clang!, Clang!".  The dogs are going crazy inside the house ... the rotweiler/lab decided the weather was too nasty for her to be sleeping outside so we were forced to let them sleep inside ...  The blind lab elsation is running around scared , bumping into everything disorientated as heck.  I get outside and wouldn't you know it... one of the trees decided to go roots up and the garden shed's roof is loose and one of the pieces wants to lift off.

Now, the rotty/lab is ecstatitic as the tree that fell over, is the favorite roosting place for the neighberhood cats so she is crashing through the branches, looking for that elusive "ghost cat" ...  She has a tendency to keep on barking at the tree looong after the cat is gone ...  while poor blind one, is walking around tenderly as if though she has socks on ... have you ever seen a dog with socks on?  It's too adorable for words ... as she doesn't have a clue where all the obstacles are.

It toke us some time, to get the two settled down again as lab/rotty wants to be outside and lab/elsation doesn't know which way is up and which way is down.  Eventually, we get both in the house but now the confusion is getting the better of blind one...  She keeps on getting into lab/rotties doggy bed ... big mistake ... and she can't understand why we keep on chasing her out of it.  Lab/rotty is standing with her usual "army brush cut" on her back-side and we know that if we don't get the chaos sorted soon, world war III is going to ensue.

Well, finally with both tucked into their OWN individual doggy bed, off to sleep I go...not.  I tossed and turned for the rest of the night...

This weather has more than our dogs turned inside out.  If the unbearable heat isn't causing me sleepless, tossing & turning nights or sweaty days (I never sweat!), my body is busy telling me of an incomming weather front.  Sometimes two days before rain hits, I know it.  My left wrist especially, burns like someone left a lit cigarette underneath my skin, my knees ache with every step, my chest feels like an elephant sat on it ... need I say more?  

This morning, wether it is due to all the weather predictions or what, I don't know ... but all my joints has turned to jello.  I feel like a limp noodle.  My knees constantly buckle and my shoulders...  As I was lying in bed, I lifted my arm, to stretch and it fell straight down!  I think I sublaxed it to a point where the joint didn't want to function any more.  It's not like when your arm is numb...  It's weird...  

The one moment your brain is telling your arm muscle to lift up.  The next moment, your arm is lying next to you and your brain and arm muscle is having a row over the fact that the arm muscle is not doing what it's told but as far as the arm muscle is concerned, it's done every thing to the letter ...  This is happening more and more as of late.  At the office, I realised I need to avoid opening doors with my right hand, due to the fact that as soon as my shoulder goes beyond a certain point, "Pop goes the wheezle" ... or shoulder for that matter ...  It's not as bad as it sounds, as it's just "sublaxing" and not totally dislocating ... just very, very annoying and I have to rotate my shoulder outwards to get it to "pop back".

Other than mr body not wanting to play along this morning, I am having brain fog again...  I get these spells where I can't remember a thing.  I can't remember what the heck I am supposed to do at work today...  This happens more often than what I'd like to admit and sometimes, even in a matter of 10 min's.  I know that everyone forgets things from time to time, but sometimes, this becomes just plain rediculous.  There has been wonderings and murmerings in the past between my self and my mom about ADD/ADHD but heck, I am not up to going to ten different doctors and a whole heap of med-bills just to get the same old answer of "Shrug shoulders" ... "I don't know".  It does scare me at times as I would go into a "Trance" or "Auto-Pilot" on the way home and totally miss my off-ramp ...

As for my Med-Aid membership...  My dad did some investigating and the bills are all paid up in full, so now, I am trying to get a hold of these guys to see just why my membership is suspended.  Easier said than done tho...  Getting pretty annoyed with "Greensleeves" at this point...used to be my favorite as it was the first song I realised I could play without even "thinking" about it.

Any way...back to work...  Sometimes it does help to leave a bug in your code.  Helps to track down what you were doing when your mind draws a blank...