Flying is fun! - Not -

At this point, I must have left comments all over blog-ville appologising for my ubrupt absence, so here is the full story.

I had to fly down to the coast, on short notice, to try and sort out some issues at one of our clients. First of all, the last time I flew was when I was 10 years old and it was no joy ride...  I was crying all the way from ear-ache, so my memories of flying werent too rose coloroud to begin with.  Second of all, I wasn't sure wether I was even allowed to fly due to my condition.  I had to make a rush phone call to my cardiologist to make sure that it wasn't going to give me problems.  Seeing as it was only an hour and a half's flight, the cardio didn't see any problem with it.  

All in all, it didn't go too badly and most probably could have gone worse.

On boarding, I literally banged my knees every second row of seats.  The isles is just too narrow, especially when trying to carry a bag which keeps throwing you off balance the whole time.  This is scary to me, seeing as I am so scrawny and I just can't imagine how someone with a larger "weight to height ratio" get's through hehe...

Take off is a bit of a white-nuckle thing the first time around, as anxiety rises, but looking out the window does wonders.  If you see what the world outside is doing, your mind doesn't have to race around trying to keep you calm that everything is going smoothly ;D.  I had pinging/stinging ear-aches every 15-odd minutes from equalising but at least nothing half as bad as I could remember having as a kid.

After reaching altitude, the only real issue reared it's head.  I had twice as much floaters running around in front of my vision and my vision was streaky and blurry.  Kinda like when you spill ink in water and it forms these streaks.  I guess that's just the affect of the altitude on my eye pressure and most likely the veigns that I saw, which explained the "root" like structure of the streaks.  These persisted during the whole flight and an hour after landing and did the same on the return flight.  As I don't fly that often, I would like to know, how much this occurs in a "normal" person?  Should I be concerned about it, see an opthalmologist after every flight to check for retinal problems?  I did feel slight grittyness in my eyes during flight, which could be a sign of detachment but seeing as the effects wasn't permanent I supposed I don't really nead to worry about it.

I felt a bit woozy, nausia and faint during most of my stay down at the coast which was more than likely my blood-pressure & VP's acting up.  I really had a sort of "opressive" feeling about me during my stay and when I got back home it was like this huge weight was lifted.  I guess I ain't getting no beach house if that's what I feel like at the coast.  Mind you, even though I haven't flown a lot, I have been to the coast a lot and this is the first time I had felt so "iffy".

The rest of it was just all fun and games...  Reaching up to adjust the air-flow and watch the passenger next to me's expression when my wrist joint popped.  Then, when getting up from my seat after landing ... I don't know wether this was due to the seat or the cabin pressure ... my chest gave a huge "SNACK!!!" sound.  I was laughing all the way out after seeing my fellow passengers reactions to that one!  But honestly, this was the loudest rib-cage pop I have ever had and it literrally felt like my sternum had somehow buckled inwards and popped back out when I had gotten up.

My biggest gripes about the whole affair, is that 1, my GPRS signal for some reason, was really bad, so I couldn't browse >:(  and 2, the weather was way too nasty to even walk on the beach, let alone take a dip.  At least I was able to get a lot done and get these people back on to track and although it is fun watching the fluffy clouds as they go by, I am definately not a fan of flying ...in an airplane at least...  It's just too much of an iffy feeling, in the air and the ground...

 

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...

A tale of two knees...

As you might have gathered from previous posts, my knees are pretty much buggered.  I'm not in a wheelchair as I can still walk but have gotten very close to the point of no return.  A lot of things such as cycling, running, walking for longer than a couple of minutes and even standing for longer than a couple of minutes, is out of the question.  I can climb stairs, albeit slowly and at times painfully.  

I am sure, a lot of you would recognise similar events and/or difficulties in your life and this would not be surprising.  People with Marfan's, usually struggle with problems that any other person would have, the difference is that all of these problems, combined with a Connective Tissue Disorder such as Marfan's, compounds and stack up to complicate things and turn "Benign" conditions into more serious and sometimes life-threatening situations.

As a todler, my mom struggled with me.  I never wanted to walk and she always ended up carrying me everywhere.  They toke me to doctors who told her that there is nothing wrong with me and that I was perfectly able to walk.  Then, started the misery years.  I would wake up in the middle of the night with excruciating leg pains.  The obvious conclusion that most doctors made, was that it was merely "Growth Pains" and that it would eventually go away with time.  Now, I don't know what growth pains is supposed to feel like, but I can gaurentee you that this was way beyond normal growth pains.  At times, it would feel like my legs was being pulled taught like a bow and at times, it would get so bad that it felt as if tho either the legiments was going to tear out of my legs or my leg-bones was going to break.  These pains would continue on relentlessly through the night.  No pain killer, no salve, nothing on this planet seemed capable of suppressing the pain.

This carried on from age 5/6 right through to about 13/14.  At some point, my parents toke me back to the doctors and one of them somehow came to the conclusion that my leg pains was associated with my sugar in take...  I won't rule out the fact that I might have some sort of sugar-related illness, but, it might have just been that the growth rate was equal to my sugar intake and therefor less suger meant less growth?  I don't know.  Suffice it to say, that untill I was about 16, I was never allowed to eat any suger products.  That was funny, seeing as I was already as scrawny as heck and waitresses would look at me with a frown when I would order "Diet Coke" or buy the diet variety chocolate.

When I started primary school, apart from serious seperation anxiety, I was always the one who could not keep up with the rest of the students when it came to track and field.  I would run my heart out but to no avail.  I would either brake down crying from being out of breath and with serious cramps or end up with my legs just stop working half way through.  My legs would just turn to jelly and refuse to carry me along at a rapid pace.  I can even remember "friends" making a game out of running away from me during break.  I had never really done any active sports because of these issues, that is untill a later stage of my life.

Now, through out my life, my family had been fighting with me and accusing me of being lazy and self-centered because whenever we went shopping or on outings, I would start complaining and whining a quarter of the way through.  It is kind of weird thinking back on it...  You as a child, have no real concept of what is supposed to be "normal"... even with something like pain ... especially when doctors keep on telling your parents that there is nothing wrong with you and that you are just plain spoilt.  

My grandma was watching us for about two weeks while my mom and dad was in America on a company trip.  After the first night, she was livid!  She eventually grabbed a tub of ointment...god knows what it was but I think at that point she was frantic for something just to make this child shut up so she could get some sleep.  She rubbed the ointment onto my legs vigourously, stating that it was some sort of "special" cream that would take away the leg pains.  Ughm...  I might have been a child but at that point, I was smart enough to realise what she was doing, so for the remainder of the two weeks, I just clamped a blanket between my teeth and held it in.

When I was 14, st 6, I was running along when I had this immense pain in my right knee.  The pain overshadowed everything and I could not even remember falling down.  When my senses returned, I was lying on the floor, clutching my leg.  I was nautious, sweating and my whole right leg was numb.  Slowly but surely, the feeling started to return, along with a dull pulsing pain.  I dragged my self to the wall of the house and creeped up it's side and started hopping to the kitchen.  

I explained the event to my mom and the next day we went to a specialist.  The specialist found it "interesting" and stated that he didn't want to do anything just yet as I am still growing but once I was 21 and the problem persisted, he would most likely operate to shorten my legiments.  I don't think he particularly understood what was going on with my knee or my parents didn't understand what he told them.  Also, this is the same specialist, that years later, performed surgery on my sisters toes to straighten them...  The operation caused her severe pain and never toke as her toes is back to what it was.  

The other day, I happened across a site stating that people with a connective tissue disorder, should avoid surgery on their feet at all costs...nice...  My sister can't be classified as having Marfan's as she doesn't have enough of the "indicators", however, before she had the surgery done, she stopped in the middle of shopping, looked at my mom and asked her "Does one's feet always burn when you walk long distances or does it eventually stop?".  This was a while after my initial dislocation when my mom finally realised that there was more to my walking difficulties than just plain stubbornnes and she looked around at me, trailing as usual, and her jaw dropped.  "Eurika!" I thought, they finally get it... or did they ...

I'm not going to go into a pitty song over my friendship problems during my school years, so suffice it to say that I eventually ended up with the "Down & Out" crowd...the ones no one wanted to sit with.  I became quite good friends with the one guy and he was involved in the school "Tenniquoits" team, which is basically tennis with a rubber ring that you through, instead of a racket and ball.  When I was in Std 8, I also became interested in it and became a part of the school team.  For the first year, things went great and me and my friend had dreams of getting individual and double's national colors.  

At the biginning of the first semester of my Std 9 year, we were competing in a huge competition between various clubs.  I wasn't doing too badly in the singles and me and my friend were getting close to winning in our class in the doubles.  Then, disaster struck.  As I went forward towards the net, to catch the ring, my left knee buckled.  The pain was excruciating and the only way I can describe it, is as a "white hot" pain followed by my body just cutting out the pain and all you feel is total numbness.  The whole court went quite and the teachers were drummed around me trying to get me to tell them what was wrong, but I couldn't speak a word.  Eventually, once the initial shock passed, I was able to explain to them what had happened. 

I basically missed the whole first semester of school.  My knee was constantly swollen and every single movement would reverbirate through the fluid inside of it sending excruciating pain through it.  Every so often I would have to go to the doctors to get the fluid drained and a lot of the time, it would turn out to be blood mixed in with the fluid.  Initially my doctor thaught it would be a very simple case and all that was needed was rest.  As time went on, my doctor started to become more and more quite untill he eventually mumbled something about not wanting to perform surgery as I haven't stopped growing yet.

I eventually had to drop out of school as there was no way that I was going catch up for the lost time.  I enrolled in Technical College to complete my Std 9 & Senior years, most of which was done on a pair of crutches and throughout the years, I have gone through a ritual of dislocation, doctor visits, threats of surgery and carrying on untill eventually, the recovery time went down to two weeks instead of months and I became used to the pain of dislocations.  I became so used to the dislocations, that when people rushed to help me, I would tell them to give me a couple of seconds and limp away once I had feeling in my leg again, leaving them with confused looks on their faces.  

One of the reasons why I never had surgery done when I turned 21, was due to the failure my sister had experienced with her surgery on her toes.  The other, being my family who was dead set against it ... more than likely for the same reasons ...

All was fine and dandy, between the dislocations and the anti-inflammatories and the pain-pills, that is, untill Feb 2007.  As I stood up, I realised I couldn't straighten my left leg.  Every time I got to a certain point, I would get an excruciating pain shooting through my knee.  Eventually, I had my parents take me to the hospital.  I have never had a dislocation like this before but apparently, due to all the prior dislocations, my legiments now has a sort of "Button Hole" scar on them and my knee cap had slipped off of it's position and had gotten stuck on the scar?  I still don't quite know how it worked.  No matter how hard I tried, I just could not relax my muscles enough for the doctor to reduce my knee, so off to surgery we went...

The first thing I remembered when waking up, was the heavy feeling of the cast, then the nurse asking me if I had a nice nap ... apparently they struggled to get me to wake up from the anheasthetic and was quite frantic at one point ... Then, the doctor comes along, lifts up my hand and comments about my long fingers.  After that, I basically fell back into sleep.  When I woke up the second time, the doctor spoke to me but I could hardly understand him through the haze.  All I could remember is him saying that I had Osgood Schlatter's as a kid (I remember that cus it sounded like "Slaughter") and that he suspected Marfan's (That I remembered because it sounded like "Marshans") and most likely would want to operate on my knees once the cast came off.  While in hospital, they had me on constant morphine drips or I would constantly be ringing the nurses complaining of the pain (I was so out of it, I could hardly remember doing that).  

Eventually, before they released me, they sent me for X-Rays to see if the knee is properly reduced.  After the X-Rays, the nurse that had taken them, comes up to me and asks "So when are they going to reduce your knee?".  I looked at her, frowned and said..."It is allready done".  She came back several times asking if I was sure.  I would later find out the reason for her confusion...

They released me from the hospital and I spent the following two months in the cast, wheeling my self around in a wheelchair.  The cast was just too darned heavy to walk on crutches and would sit painfully on my knee.

When the day came that the cast was going to come off, I was soo excited, I could hardly wait.  Sitting around for two months is no fun...wether you have buggered knees or not.  The doctor started cutting open the cast, very excited to see his handy work but when the cast came off, he fell silent.  He told me not to even try to bend it until I have seen a physio.  He looked striaght at me and told me that he would not be performing surgery and that he has no idea as to how to help me.  He continued to explain that I have what is called Bilatteral Patella Alta with Chondromalatial Osteoarthritis.  What this means, is that both my kneecaps, sits too high up, causing extreme pain when pressure is applied due to the mal-allignment and causing degeneration of the joint.  This is why the X-Ray nurse was so confused.  On the X-Ray, it looks like my knee is totally out of whack.

It toke me another two weeks to regain use of my leg and knee.  At times during this whole process, it was a very real possibility that I could lose the use of my knee completely.  The same reason why the specialist didn't want to perform surgery.  There is an 80% chance, that I would end up with a rigid knee.

So that is where I am at in terms of my knees.  Untill such time as my knees are totally useless, they will not operate...the moment they are useless, I won't be able to walk properly and they will most likely have to replace the cartlidge in my knee's, my knee-cap and who know's what else.  Every time I walk, I run the risk of a dislocation.  If I step in a ditch, receive a knock against my leg or even just twist my ankle, I WILL dislocate my knee.  It is not a matter of I might...I Will and everytime I dislocate my knee, I get closer to total joint failure.

Chondromalatial degeneration can be slowed but it can not be reversed.  I don't know what the future of my knees are.  One way to prevent further degeneration, is to go to a Biokineticks sentrum.  The problem is, that as I mentioned before, I can't ride an exercise bike or run or even walk on a treadmill as it will cause more wear on my knees.  The other factor is Osteoarthritis in my other joints occuring more and more, due to the hypermobile/lax nature of my joints.  I can't even do weight exercises with my legs, as I am not allowed to exert my self over and above 10kg's as the increased blood pressure combined with the two regurgetating & prolapsing heart-valve's, will cause my aorta to rupture.  So now, I am thinking of looking into swimming as an exercise.

But, we all have our problems, trials and tribulations.  It doesn't help crying about spilt milk...especially not if the milk was destined to spill no matter what you do.  I can still walk and for that I am thankfull...

Drop, Stop and Roll...

Some days, it seems as if tho my body and brain conspires against me...

Dropping...

I was chatting to a colege while making coffee when out of the blue, the jar fell out of my hand and bounced across the carpet, leaving a smear of coffee all over the floor.  My colege stopped mid-sentence, looked at me and started laughing.  Why?  because this is the second time this has happened!  Drat!

It seems as tho my fingers kinda "forgets" that it is holding something if I hold on to it for too long and that the strength at which I am holding the object starts to wane, untill it eventually just drops out of my hand.  At times, while holding a mug ... by the ear ..., it would slip and hang in my fingers, spilling the contents on the floor.

When playing on the keyboard and/or piano ... when I can muster up the strength to ignore the wrist pains ... my fingers just doesn't always respond the way they should.  They either quiver and accidentaly press the wrong note, or they don't press the note with sufficient force, leaving a very soft note in mid-tune.

Stop...

Heh...most of you would find this quite amusing and I don't mind you laughing, as sometimes it catches me so unaware, it makes me laugh.

Walking out of the office building, I am suddenly confronted by the tall, hard, steel frame of the complex door and I stopped inches away from smushing my nose into it...  First off...no, I wasn't looking at some hot chick walking past and accidentally almost walked into the door (Although I wish).  I was looking straight ahead and paying attention to where I was going...  It's almost like either my body decided to suddenly vear off course smack into the path of the door-frame, the door decided to play a prank on me by jumping into my way at the very last minute or that for some reason, I felt I could walk through solid objects. 

The other night, at home, I stood up to fetch something from the kitchen, and as I was walking, I slammed right into the corner of the wall!  What the!  It's weird...  I seem to lose a sense of direction/sense of my surroundings at times.

Roll...

This might not be what you are expecting...  Every so often, I would make the utterly painfull mistake, of swiveling my chair in as I sit down.  The end result?  I smack my knee against my desks drawers!  YYEEEOOOWW!  It's the kind of pain that makes you roll around on the floor with agony.

This form of event, is always a hoot to my coleges.  I don't even smack it hard...it's more like a light tap but man does it hurt.  It feels like someone takes a nine-inch nail and drive it into your knee joint under your knee cap.  It's enough to bugger up my knee for the rest of the day and even at times the following morning as well.

As painfull as it is, I just don't seem to learn my lesson!  It just keeps on happening...  One thing is for sure...  there is a pretty good reason why the Mafia targets your knees when they want to inflict pain on you !  * Cringe *

Here's hoping, my two "foes" feel I have had enough torcher for one day...

Sheesh!

Phase out-Phase in

Last night's mood shift was one of the slower ones.  I usually tend to shift from one mood to the next in a matter of hours not a matter of days.  It's what they call "Rapid Cycling".  Heh...and I thought I would never "Cycle" again ... pun ... .

At any rate, with my mind being not so consumed by depressive thoughts...for the moment...it's time I get back to what happened with my doctor's appointment.  And just as a side-note...I don't usually succom to these episodes but the medication is far from perfect so these "Gremlins" tend to slip through from time to time.

Saturdays is the only time I can truely squeeze in a visit to the doctors.  Programmers is one of the rare breed of employee that would go to work with the sniffles and not even complain.  We don't have a choice...work is just too demanding to miss one second, lest you drown in all the back-log.  

But, to get back to the point...  On weekdays, all doctors are accounted for and you have to call ahead and make an appointment.  On Saturdays, the doctors rotate and you are "served" on a first come first serve basis.  I get up early, determined to be first in line and arrive 20 min's before the doctor has even arrived but wouldn't you know it.  There is allready 4 other patients in the que.  I get to the front desk and realise that my normal GP is not on call this weekend...drat, so I had to see his partner.  

Fine, I will give this guy another try...woe is me.  First off, this is the guy that refused to investigate the possibility of Marfan's, even in the face of overwhelming evidence and stated "You just have very big hands"... uhu ... Second off, I had to explain to him every little neuance that he picked up even before getting to the real problem at hand.  

I had to explain that another doctor had diagnosed loss of cartlidge in my wrists (Osteoarthritis) where he had thaught it was a simple "Ganglier" that I should just ignore, thus the wrist braces.  Then, he gasped when he saw the row of circular marks on my stomach/pelvic area.  * Roll Eyes & Sigh *  I told him to just ignore it as it's nothing serious, but he insisted...  So, I had to recount the tale of a motorcar accident I had.  In this accident, I had one of the EMT's check my heart as I was having a lot of fluttering and pain from my chest.  The EMT, subsequently screwed up...and left me with a row of "Electrode" burns on my pelvic area that has since not gone away.

So, enquisition over, he finally started examining the issue at hand.  The inflammation in my throught was gone...thank goodness.  And my chest didn't seem so sensitive yet the lump was still there.  He started prodding and poking and when he prodded to the side of my stomach and my whole body jerked, I could swear I saw his face light up.  "Oh my!  Someone needs their appendix taken out"..."Uhm, it doesn't hurt" I replied.  "Oh..." he said and continued and found the same body jerk on the other side of my stomach.

Eventually, he stated that I seem to have a bit of acid build up and that he was going to give me some medication that would clear it up by Monday.  Fine...let's try that.

I trundled off to the pharmacy and waited while the lady started running the script through the system.  When she frowned and started typing frantically, I interrupted her to state that me and my dad's initials are the same and that she should look at the specific med-aid instead of our personal details.  She shook her head, stating that she found mine but that the med-aid wasn't going to pay.  I told her that it's fine, as my med-aid has been depleted since April of this year and that I would have to pay cash any way.  Nope, she said...it doesn't say "Members benifit exceeded", it's says "Membership suspended"!  What the hey!  Ok, I will have to look into that, I told her...  She gave me a concerned look and pleaded with me to do it as soon as possible, as I wouldn't be covered in case of an emergency.  Truely, that is the first time I have felt sincere concern from a medical professional...and it almost bowled me off my feet.

So here I am, Monday...  The lump is still there and I have no med-aid to pay for another Doc's visit (which is about the only thing they were still paying for)  untill this is resolved.  * Sigh *  I think to my self, is this really worth this effort and grief?  It's not causing any obvious harm, so maybe I will just leave it as is untill it either goes away or worstens.  If it worstens, then fine...I will get back to the doctors, granted my med-aid is sorted.

Oh the fun and joy...  Were I a "normal" person, I wouldn't give two hoots about some lumpy feeling in my throught but with this condition, you never know.  The smallest little thing can turn nasty, bite you in the back side and land you back in ICU for a week.

I wonder sometimes wether this is what most doctors misunderstands.  They assume that if something isn't hurting, it's not a problem.  They don't realise, that if something doesn't feel right, chances are that something is out of whack and even if that something is benign in it self, it can cause a cascade that can impact other areas.  I mean, not even mitral-valve prolapse is a concern in "normal" people, yet in someone with a connective tissue disorder, having it run unchecked, is a death warrent. 

Stub your toe and who knows...you might just wake up with a nose bleed...  Sheesh...

I should have seen it coming...

You will get to know me through time and time will tell, if I will have you as a listener or just a casual passer by. We all have different characters and different reasons for being on the internet and some don't feel like listening to others drama's and tantrums and I am not asking you to. This is just a place for me to vent and let things out in the world, instead of it boiling inside of me stewing...no matter who is listening.

I have a difficult mind and a lot of things I say, comes from a darker place...things that needs to come out, that others might not understand or misinterpret. If you see one of my posts with a "Morbid" warning, you can ignore it if you don't feel like listening to my whinging... but it needs to come out, lest I spend another fort-night in a cold hospital room for smashing my fist through a cupboard door...

...MORBID POST AHEAD...

Apart from the physical...the Marfan's...the silly spelling mistake in my DNA which dictates my life, I am also having to put up with a mind that does not always function as a "normal" mind should. I have Bipolar Disorder. If you know what that means, you might somehow understand some of my rantings during this post. If you don't, let me enlighten you...

I don't know all the techinical, medical criterea they used to qualify me as being Bipolar, what I do know, is that I suffer from multiple mental difficulties. These range from Anxiety, Social Anxiety, Depression, Obsessive Compulsive Disorder and even possibly ... Oh how I love that word "possibly", so easily flung around by medical professionals ... Borderline Personality Disorder.

To get back to the post at hand... This whole week, I have been feeling Manic, estatic and up-beat, with all kinds of ideas racing through my mind like a runaway freight-train. I should know by now, that it's a clear sign of things to come... The longer and stronger the Manic phase...the harder and deeper the depressive phase will be that follows...and it's here...in a big way.

I can't sleep right now...and that's a bad sign. Sleep is my only escape from this world and it is something I usually miss every single waking moment, but tonight I can't sleep. My mind is racing, still high from the Manic demons that flooded my brain yet on a downward spiral spinning ever faster and faster into the cold, dark abyss that is depression.

My body has been broken, for years and years...my mind has been dead for longer than I can remember. Some days, I feel I am just passing the time until the day I finally go to sleep...and not wake up. I see no purpose nor reason for my existance (and all the classical reasonings of a depressed mind). The only reason for me hanging on, is my family and even then, I don't know why. I am loved by my family, yet I don't feel it. I am constantly surrounded by my family, yet I am constantly alone. What I need, is not their practical support, nor their money, nor their advice, nor their "sad masks" they put on to try and show me they care. I need someone who really cares. Someone who will hold me tight, kiss my forehead and warm my heart with the true feeling that they care. Someone whom I can feel that they love me...someone who really cares. Family is just there because they have to. Your parents only love you because they gave birth to you.

I don't need sympathy...I need empathy.

There is a subtle difference, between the two concepts. People sympathise when a loved one dies...they don't truely feel something...they most likely never even knew the person. Empathy, comes from the person next to you at the funeral, weeping their eyes out, drawing you close and holding you tight. Doctors sympathise with your situation, when they can't help you, and it leaves a bitter aftertaste in your mouth.

Empathy, can only come from those, who are willing to take the time to search their hearts, pour their feelings out and feel the pain that you are going thorugh. Empathy can only come from those, whom is willing to stop what they are doing and through their arms around you and comfort you. It is so much simpler, for one human being, to show empathy if they had gone through the same trials as you have... The reason is they don't have to make an effort to try and think themselves into your situation.

My life is devoit of purpose...for my heart is devoit of love.

... SO ENDS THIS MORBID POST, WITH THE HOPE THAT THE CONFUSED LANGUAGE OF MY SOUL, MAKES SENSE TO SOMEONE ...