Thursday, December 11, 2008

Things we used to do...or wanted to do...

There is so many dreams that gets shatterred from this condition...  I have had a lot that I wanted to do and have been doing, that is now out of reach.  It is strange at times it seems like there is a hand guiding me, blocking my path to things I want to do but which is obviously not meant to be...

Starting with the more "childlike" dreams...

I wanted to be a Fighter pilot/Race car driver

Not possible with poor eye-sight, weak knees and now even less possible due to my heart problems (not to menchion my age hehe)

The more realistic dreams...

I wanted to start doing EPEE (Fencing)

At one stage, I thought the exercise would do my knees good and that my knees were just going through a difficult growth stage.  I have always been fascinated with sword fighting, especially from the dark ages but because sword fighting reinactment was a little too "play acting" for my taste, fencing was the next logical step.  I even signed up for a class, explaining my difficulties with dislocations in the past which the instructor said he could most likely work around and was about to start when I had a horrible dislocation that wiped that dream off the slate for ever.  As a fall back...

I wanted to practice Archery

Next to sword fighting this was another fascination for me...but strangely enough, this too was cut short as I developed problems in my wrists and subsequently was diagnosed with Marfan's

I wanted to grow my musical talent

I have an uncanny talent for music...being able to play songs by just hearing, on the piano and keyboard and I had even started trying my hand at composing.  I would have most likely excelled if I didn't have a problem with theory.  Any theory...wether it is history, economics, brain just can not absorb it.  I can only learn through practical experience.  I can read sheet music but I can't read and play at the same time and I can not learn a piece because of this "theoretical" block in my mind....  To give a good example, my final programming exam results, came down to 36% for Theory but 98% for practical and this echoed throughout my school and college years and still is an issue.  But, as with the Archery, this has been placed on hold yet I still at times beared the pain and kept playing...untill now.  I am getting serious joint instability problems in my right shoulder so for now, this hobby is completely on hold.

So what am I doing now...

R/C Hellicopters

At this point, this is the only hobby that I can do while sitting down and not placing a lot of strain on my wrists and/or shoulder.  Don't get me wrong, even though this is not my first choice, I am enjoying it.  It is taking me longish to get to grips with...but that's the fun in it.  "It's not so much about reaching the destination as it is about the journey it's self".  I can now at least maintain level hovering without the chopper careening out of control and I am slowly starting to turn it in different angles and trying flight...It's much more difficult than what it seems, at least to me, as you not only have to persuade your mind that the controls switch around when flying towards you but you also have the added third dimension of elevation that you need to control.  The helo that I am flying is what is called a "Trainer", so it has dual rotors on top instead of a tail rotor to make it easier to control while learning.  The downside is that it is more suited to indoors flight than outdoors as it is too light to withstand even the slightest of breeze.  Flying indoors creates a unique challenge in that objects are much closer and causes inconsistent flight behaviour due to turbulance bouncing off the objects from the helo's rotors.

Although I am sure that this is most likely a painfull subject for most...what dreams have you had that has been sabotaged by your bodies lack of cooperation...and what do you do instead?

Monday, December 8, 2008

Shoe is on the other foot...

If you recall, my dad hurt his back picking up Jessy when we were taking her to the vet's...  Well, Jessy is doing waaay better.  We have halved her medication cus if we give her a full tablet, she's worse than a jack in the box with a tail!

As for my dad...things aren't that good...  The doc's initially gave him anti-inflams and sent him on his way.  On Friday, he couldn't take it any more and went back to the doc's.  They finally decided to run some tests and X-Rays.  When the X-Ray's had come back, it turns out my dad has Osteoperosis in one of his vertebrae as it is noteably smaller than the rest and causing him severe pain.  Being his brooding, hard-headed self, he just shrugs and carries on lifting chairs and carrying things around...  It's going to be hard for him to learn not to do silly things like that.  He is always afraid my mom would get hurt by carrying things, but he will have to get used to the fact that my mom is the "strong" one in the family now.

Without being nasty tho, may-haps he will now understand what I have to go through on a daily basis and how difficult it is for me to stand around doing nothing while the rest of the family scurry about carrying groceries and moving furniture...  but with him... I somehow doubt that.  He would rather carry his own coffin than be carried to the grave...

The other aspect of this issue is yes, my dad is getting older but the fact that my grandma also had major Osteoperosis problems, hints to it being linked to the Marfan's.  My dad has never shown (or at least admitted) to any problems even though he has had some indicators, including spontanious pneumothoraxis.

He still needs to go for a bone-density test, so we don't know yet just how bad it is.

As far as I can see, the most that can be done is calcium supplements and at this point, I am not going to run paranoid that I might have it...or should I.  In any case, I drink a lot of supplements already, so there isn't much that can be done otherwise in the first place.

Friday, December 5, 2008

Brace yourselves!

Well, this is just a quick notification that I got my shoulder-brace today.  It's amasing how much of a difference this thing makes!  My shoulder doesn't feel loose while wearing it and it's a definate keeper untill the Biokineticis can figure out wether the exercises are working or wether I need to get it surgically sorted.

The one issue with it tho, is watch the nerves!  It's placement was a bit off at one stage and the band around my chest ended up pinching a nerve-bundle under my left arm...YIIIKES!  It felt like I had a nest of hornets on my left shoulder for about 15 min's.  That was not nice at all.

On other fronts...  I had to deal with one of those iffy situations last night...  We had our christmas party and I had to slink out by about 6pm, trying to explain to everyone that even though I didn't have a single drop of alcahol, I was totally wasted and that my whole body was in agony.  The rest stayed on till ten...ugh.  That's just one of those things and it doesn't bug me too much.  It's just the getting the third-degree from my co-workers that sucked as they thought I was just trying to ditch the party while in the meantime I had to drive home while in serious pain and suffering seriously bad fatigue which was almost just as bad as someone driving drunk.

At any rate, my body is giving me uphill today but hopefully it will settle down by the weekend.

Wednesday, December 3, 2008

Doing it, Did it, Done!

I decided to go ahead with my latest pet-project.  It just seemed to come so natural and once I started, I just didn't want to stop.

I am not going to claim it to be a raving success...far from it.  Perception gets twisted when you work too close with something and because it is "yours", you tend to not see it for what it truely is.

If I have peeked your interest and you are curious enough...check it out on my latest blog...

I hope you enjoy ;D

Tuesday, December 2, 2008

Something new & Some Criticism

Hmmm...interesting that, seeing as I complain about not having enough time in a day...heh.  

Well, for one, I want to try and get away from sitting in front of the computer on Saturdays and do something more tangible...  for another, my R/C Helo only has about 20min's of flight time before I have to recharge it, so it's not something I can do the whole day long.

I'm not going to expand on what I intend on doing just yet...but, if I can figure out how to do it and wether it is going to will be the first to know.

I tried reading a book again...hmmm...  

Suffice it to say, stick to authors you know.  I am not going to criticise this author on the basis that I am a great writer...heck, far from it.  I have never written a book in my life but I have read more than a few.  Now, my only reason for mentioning this, is not to critique the writer, but more to raise some interesting points one might concider when thinking of writing a book.

The author of the book is apparently an X-Navy Pilot and even though, that gives him superior insight into the workings of planes, weapons and aerial warfare, he's definately not the next Wilbur Smith, James Clavelles or Stephen King...

He gets too long winded and over-describes technical details to death.  He has a scene where there is a political meeting in the white house...  Now sure, he is trying to bring across how abnormal the cabinet is in this particular book but describing a political discussion in detail for 10 pages where only one page has relevance to the actual story?  I was yawning after the second page and after sitting through the third, I started skipping ahead to the next chapter.  

Lo and behold...  In the next chapter, he has a new character introduction.  Fair enough, you need to sketch some background on the character so the reader can familiarise themselves with him/her, but you don't need to give all of the character information in one go.  You need to spread it out a little giving a bit of info here and there at oppertune moments.

I really wanted to get into this book as the actual story is quite interesting... but I just don't have the patience for it...  I think the worse is when he gives the full title and military rank after each character has spoken or performs an action, instead of just referring to their name or surname.  To me, that becomes an itty bitty annoying.

I just wonder wether these comments is just my own perception tho...  We all have our own likes and dislikes when it comes to books and who knows, someone else might just enjoy that sort of thing.

Friday, November 28, 2008

Taking stock ... of what some might call a hectic year

It's the end of the year...and somehow, my mind can't reconcile everything that has happened.  It seems like it is in a freeze mind where it only vividly remembers yesterday and everything else seems to have happened aaaages ago...

This might be partially why I am having such a difficult time with acceptance... because I don't see everything in perspective or that too much has happened too close to each other...

I feel that before I head on into 2009, I need to reconcile 2008 and get the facts straight, lest 2009 ... God forbid ... turns out to be just as hectick and causes even further mushy brainliness ... so here goes ...  (Heck, I hope I recall everything )

-  In the beginning of the year, I had wrist pains that the doctors could not figure out.  They initially figured it to be a "Ganglier", but couldn't find anything on X-Rays.

-  I was sent for physio, which just basically brought up more problems like the fact that my left shoulder and left side of my neck was in spasmism and spent a couple of months being stuck with acu-needles, probed massaged and generally "wringed out" from the head down.

-  Later in the year, I could not take the pain in my wrists any more, so I went to a new doctor close to work and he subsequently diagnosed me with Marfan's Syndrome and loss of cartlidge due to Osteo-Arthritis in my wrists, curtosy of the Marfan's.

-  I had my first major vehicle accident of the year, leaving me without a car for over two months.

- I had another minor incedent with my mom's car the following day

-  A cardiologist confirmed Mitral-Valve Prolapse with regurgetation and risk of aortic rupture, due to the Marfan's and I was placed on beta-blockers.

- Got diagnosed with flat feet due to collapsed arches curtosy of lax legiments in my feet thanks to the Marfan's, which required me to wear orthotic inserts in my shoes.

-  I had a severe Kidney-Stone of 5mm, which had to be removed surgically

-  I landed in ICU due to breathing and chest pains when coming out of theatre for the kidney stone and was labled a cardiac-risk which meant no pian/sleeping tablets for the duration of my stay in ICU.

- Had an absess in one of my teeth that had to be removed.

- I started getting increased problems with light sensitivity and after images, for which I went to an Opthalmologist

- I almost landed in ICU again during a Brain MRI for the cause of the after images

- Wound up at a Neurologist whom could only say that the after images is "Palinopsia" from an unknown cause, most likely being a cross-over between migraine's and seizures

- A month after getting my car back from the shop, I had another major accident ... in which I wrote my car off

- I lost my pet hamster due to old-age

- During a six monthly visit to my cardiologist, they found I also had an Aortic Valve prolapse with regurge.

- My home pc's screen-card blew

- Our one dog was diagnosed with spinal problems due to old-age

And now, I am closing off the year, with 

- Increasing instability in my right shoulder, which they don't know wether exercise will help work to avoid surgery.

- My home pc's power supply blew, taking the DVD-Drive with it

On top of all of this, I had numerous bouts of inflammation, pain, depression etc... as well as my medical-aid being depleted since April.

Hmmm...doesn't seem all that bad...does it?  No, it's not all that bad, seeing as I am still alive...

This year, I am selebrating new-years ... not because of the coming of the new year, but because of the ending of the old...

Here's to a more subdued and happy 2009 to all!

Thursday, November 27, 2008

Buggered PC's, Eye-Catching Cars and Driving Experiences

Yay!  That was quick work I must admit.  I got my PC back in a matter of a couple of hours.  I can only test it properly once I get home, but it has a new heart ... as well as a new DVD player ...

That's right, the power supply toke my DVD player down with it.  Luckily, no other components ... especially my motherboard ... was injured during the burn-out.

I ended up chatting to the technician about my car, as I had asked him to put the pc in my car and he wanted to know if it was an ST.  I almost laughed as I saw his face fall when I told him no :P.  I have a Ford-Focus 2.0l SL and even though it doesn't have the Super & Turbo charged 2.5 of the ST, it still has enough grunt. Infact, much more than my Mazda 3 2.0l that I wrote off earlier this year.

I don't know what it is with these new Valve Tech engines like Mazda and Toyota...  The VVTI setup on them is just sooo sluggish in comparison with the Focus's VTEC.  The other major plus, is the roadholding and skid-control of the Focus, curtosy of the ESP (Electronic Steering Program).  I could have used that in my Mazda...bleh...

But on that subject, let me tell you the life story of my Mazda 3...  I had it for about a year and was finding it not too bad, except for the interior that kept on wanting to fall to pieces every time I opened the ash-tray and the Valve Tech making it a tad on the sluggish side ... or maybe a bit more than just a tad.  Then, disaster struck twice in a row...

Disaster One.

While driving on the high-way, I suddenly hear the noise of a horn, a loud "CRASH", a tyre flying past me missing me by a couple of inches and then a white sedan, literilly flying across the center devider from the opposite side of the high-way, straight into my line.  I snapped the wheel quickly to the right, found my self on the grass and jerking the wheel left and right trying to get the car to come to a stand still ... mind you, this was at peek-highway speed of 120km\h.  60m\h is about 100km\h?  

When I finally got my car to a standstill and walked back towards the accident site, I was stopped easily a full km away from the main accident site.  As I got to the site, I was horrified.  The sedan was smashed with the hooter wailing and the driver, a middle aged lady, hunched over the steering column, with blood seeping from her mouth.  The rear passenger was screaming in agony as both her legs was broken and the front passenger was trying to calm her, having at least nothing more than a gash to her head.

I helped a bystander prie open the bonnet and sever the connections to the battery ... both to avoid any sparks as fuel was running across the road and to quite down the maddening screams of the hooter.  The Medics, Fire Department and Traffic police arrived and started working on the injured so I stood back.  The driver was airlifted to a hospital and the two passengers was transported via Ambulance. 

Once everything settled down, I headed over to the main investigating officer and told him I was also indirectly involved in the accident.  The officer looked up and I only then noticed him pulling a silver sheet over a driver in a Ford Bantam that had not been as fortunate to be able to get out of the flying car's way.  He nodded to me and then signalled to the medics that the guy was dead.  He followed me down the road to where my car was standing and I showed him the damage to my car.  Unfortunately for me, they had been trimming the hedges standing in the center devider and had left all the cut off-branches, leaving my car in a very sorry state.  

The radiator and air-con was impaled, the under-tray was ripped off and the whole right side of my car was scratched to hell and gone.  He looked at me and asked "So you were in this lane?", pointing at the lane where the tow truck was now busy hooking up what was left of the white sedan.  "Yep" I replied.  The officer looked at me for a moment, shook his head and grinned.  "Ok, we will get you sorted, but please be aware that it is going to take some time as this is now a homicide investigation.".  I didn't mind at the time, but then, I didn't know that it was going to take over two months before I got my car back.

Disaster number two...

Believe it or not, but a month after finally getting my car back, the next disaster struck.  We haven't been able to prove it, but it was definately due to disaster number one and poor checking on both the Panel-Beaters AND the Garage, whom I had given specific instructions to check for any unnoticed damage, that this occurred...

I was driving home at night, when I realised I had forgotten to send an important e-mail, so I wanted to climb off at the nearest exit and head back to the office.  As I pulled off onto the exit, I felt a sudden jolt and my car started to wildly skid across the road.  I was getting it back under control but my wrists didn't want to cooperate and I lost control of it.  

The next thing I remember, is seeing a blurr of grass passing in front of my windscreen, with gravity getting inverted a few times and then finally is sitting in my car, right side up, at the bottom of a 20m embankment with that nasty accident smell of twisted metal, melted plastic and exhaust fumes filling my nose.  My glasses was nowhere to be found but my night-driving clip-ons was in two pieces on my lap.  It seems like the driver side curtain was the only one of the four airbags to have deployed and it had smacked me very hard in the face, braking my clip-ons in half and bending my glasses out of preportion, flinging it across to the passenger seat.

Somehow, my seat was further back than what it was designed to go and feeling still shaken, I turned off the radio by kicking the dash as I was a bit pissed off at the same time.  Then I shifted my focus to trying to get out as I didn't like the "click, crackle, click, tick" that was most probably just normal damage sounds but I didn't want to take any chances.  I tried the door handle and nothing happened..  I tried locking and unlocking and still nothing happened...  I think at that stage I somehow started to get into a panick ... it is odd when your body and mind takes over and does things without your consent ... so I started kicking the door.  Then a voice came from the outside "Wait baas!  Wait!" and a road-works employee pulled the door open from the outside.  

I sat there talking to the guy while we waited for the ambulance ... don't move someone just involved in an MVA ...  When the paramedics arrived, the got me out of the car and onto a stretcher and was hauling me up the slope when I heard a "ZZZAP" followed by an "You Bugger!" and some hillarious laughter.  It seemed like I had clipped an electric fence on the way down and the loose cable caught the paramedic on the butt!  That was quite ammusing and he jokingly threatened to drop the stretcher if I didn't stop laughing.

As they got me into the ambulance, they were quite calm, up untill the point I reported that I was feeling nautious.  The paramedic slammed the doors shut and told the driver to gun it.  On arriving at the hospital, they rushed an ER doctor to me to check me over due to the nausia and the nasty bump I had at the back of my head.  The paramedic had my Medic-Alert card with him, as he had retrieved all my valuables from the car and as the doctor looked it over, she frowned, looked at me and asked me "Have you been checked for scoliosis?".  I was gob-smacked!  Not only did she know what Marfan's was but she had sufficient knowledge about it to know what problems to look for.

I told her that I have had X-Rays before and they didn't find any problems but they werent looking specifically for it.  "Ok, well lets do some of your skull and then we can include one to check for scoliosis while were at it"...gobsmack #2!  In the meantime, my parents had arrived and when all the tests came back negative, the doctor just informed them to keep me from sleeping for the next 24 hrs and that I should not watch TV or anything of that sort.

A week later, whiplash set in and I went to the doctors for some pain meds.  He looked me over ... frowned and then said  "You know what?  I am almost positive that if it wasn't for the connective tissue disorder, you would have had a whole bunch of broken bones instead of just whiplash!"  Just goes to show, every clowd has a silver lining ...  I ended up with just a neck brace for two weeks and no car for another couple of months.  Thinking back, I was lucky in many respects...  One of them being not ending up in the pond, a meter or so further from where my car came to a stop and the other being that I had pulled off onto the high-way exit and not having had the tyre blow out while in traffic.  That, by the way was the cause of the whole disaster...  a blown tyre, due to a flaw picked up from disaster #1, which no one picked up on ... including me.

This was only two of the many MVA's I have had...and honestly, it is all just bad luck.  I have only had one single accident that I could be blamed for ... and that, had to do with driving tired after working till 3 in the morning ...

Reckless Speeding & Driving Drunk, is the two things I will NEVER permit my self, as that is irresponsible and just plain stupid.  Having a 2.0l does not give me a licence to race, and in fact, requires respect and responsibility from the driver.  It does however save my body from doing too much work in the sense that 2.0l's usually has more luxury and proper interiors along with driving asists such as ESP and Cruise control, which reduces the amount of foot work tremendously and stops my body from constantly getting inflamed due to a bumpy/uncomfortable ride.  The other advantage is having power to overtake and climb gradients without having to wade trough your gears and clutch to get the steam back up.  That is one thing I can't afford tho...  automatic gearbox.  

Correct me if I am wrong, but our country is really backwards.  The majority of cars is manual/stick-shift.  Only 10% of the cars on our roads is automatic and they come with a very hefty price tag, whereas in places like America, it seems to be almost the opposite with only the more sports orientated vehicles having a manual gearbox for driving affect.

That, is part of my driving experience thus far...  Maybe next time I will tell you some of the more hillarious ones ... especially the one involving a traffic jam on the high-way ... and a supposedly over-zealous bike-cop.

Bio Visit & Hardware Breakdowns

So I saw the biokinetecist this morning...  

He didn't do a lot of probing and/or prodding but scheduled another appointment for Monday as the usual Bio is having an operation. Once again, he is most probably painting a picture of the worse case scenario... He toke my X-Rays & Sonar as reference in terms of planning my exercise routine but he didn't seem too I understand it, most of your rotator cuff, is held together by legiments and there is only a slim chance that strengthening the surrounding muscle will stabalise it.  

What's more, is that my left shoulder is starting to ache ... and funny enough, I recognise that ache ... * Looks at right shoulder, looks back at left shoulder *  

To make matters even computer at home had a heart attack... I turned it on and fizzle, pop, flame out! There was literally flames coming from my power supply. I had to take it to a computer equavilant of a hospital for a heart transplant... and hopefully, none of the other "organs" was affected. Holding my breath untill the "surgeon" phones me with the results. What next! Sheesh...

Wednesday, November 26, 2008

Hmmm... Physio here we come

For now, the doctor wants to put off surgery as much as possible. The X-Rays and Sonar at least came up clean for any damage thus far so that's a good thing. Bad thing about that, is that it just confirmed my Doc's suspicions that my legiments in my shoulder is way too lax. 

He wants to try Physio & Bio first, to see if we can't maybe get the muscles to take over the work from my legiments. So far, it has worked for my knees, albeit just to stop them from popping out as they can't do anything about the chondro accept try and halt the degen.

No degen in my shoulder is a reason for selebration tho 
:D. The last thing I need now, is yet another osteo joint. I am seeing the Bio tomorrow and hear what he has to say.

Monday, November 24, 2008

Need a shoulder to cry on? Sorry, no can-do

My shoulder has been becoming more and more sublux and I eventually caved and went to my doctor, just to be sure it's not gona cause any problems.  Well, the answer is "Yes"...  If I were to leave it as is, it's gona chew up the cartlidge, bit by bit.

The doctor was not at all impressed with what I showed him and made an appointment for an X-Ray & Sonar tomorrow...

The trouble with my shoulder is:

-  My right arm now hangs flush against my body but my left arm still hangs outwards.
-  I can only lift my right arm 25-30 degrees when my arm is extended.
-  My arm drops/pops while held up in a bent position.
-  I can partially pop my shoulder on demand (Not a good idea as it obviously eat's cartlidge for breakfeast).
-  I can lift my right shoulder-blade without moving my shoulder.

Best case scenario, I end up with my arm in a sling for a couple of weeks and some physio...

Wors case scenario, they have to opperate which carries a 6 month recovery period.

I am not even looking forward to having my arm unuseable for a couple of weeks, let alone 6 months...

Wishfull thinking ... it just turns out to be nothing more than a sprain...  I hope...

Thursday, November 20, 2008

Pets, Vets & the long wait...

Last night, on arriving home, something was different.  Jessi (Short for Jessica), our Lab-Elsation didn't come to greet me...she was lying in her doggy bed not moving.  As I approached her bed, Lolli the Lab-Rotweiler started whining ... a weird odd whine that I have only heard once before during the time that Pattat, rest his loving soul, our Lab-Husky was diagnosed with cancer ...  and would keep on whining, getting more serious the closer I got to Jessi.  Eventually, I went to my mom and asked her what is wrong with Jessi.  She said she didn't know but that she had slinked in, almost crawling across the kitchen floor and hadn't even bothered to open the security gate with her paw ... her favorite act of the day ...  instead waiting for my mom to open it.

Now Jessi, has had sight problems since a very young age.  Due to the genetic predisposition of Elsations, to getting cataracts and the Labrador mix, we werent able to save her eye sight and she has been blind for some years now.  She is very happy without sight though and adjusted very well.  At this point tho, we suspect that she had somehow hurt herself, either through getting a fright or while wrestling around with Lolli.  Her hind quarters doesn't seem to be working all that well and seems to want to give way under her the whole time.  We toke her to the vet last night and he said he would have to wait till this morning when his staff came in, to take some X-Rays and run some tests.  He also said that it is either an injury to her spine or due to old-age.  I can't remember how old Jessi is, but I would have to guess that she is well over 7 years.  

She was such a brave little trooper.  When my dad had come home and we decided to get her to the vet (Neither me nor my mom could pick her up), she calmly followed him to the garage, allowed him to pick her up and place her in the pick-up.  When we arrived at the vets, she allowed the vet to prod and poke her and then when he placed her in the holding pen, she sniffed around a bit and happily laid down to sleep.

All we can do now, is wait for the vet to X-Ray her and run the tests on her before we know what decisions we will have to make ...

It is odd tho when you think about it.  In the case of a human being, "mercy death" is concidered to be taboo but when it comes to pets and animals, it is almost a prerecuesite in the case of a bad illness and/or injury.  This is made even more strange due to the adaptability of animals, which in my view, they are much more capable at than humans.  Obviously the one reasoning, is that animals can't speak and/or tell you how much pain/discomfort they are in and the other being that a dog can have, and correct me if I am wrong, 60%? of it's vital organs fail and you wouldn't even know about it untill it was too late.  This already happened to one of our dogs called Soentjies (Kisses in english).

This raises another point ... thinking back, we have had a lot of pets and counting our dogs alone, which we always tried to have in pairs of two or more, replacing the one as they passed away to keep the other happy and in company, there was:

  Type:  Pavement Special
  Color:  Black
  Sex:  Male
  English Name:  ?
  Passed:  Lost -

  Type: Labrador
  Color: Black
  Sex: Female
  English Name:  ughm.. "Piss off" ... if someone were to break in, and the dog attacks and they tell it to go away, it keeps on coming ;D
  Passed:  Old Age

  Type: Skipper/Foxterier
  Color: Beige
  Sex: Female
  English Name:  Wooly ...  She looked like a ball of wool as a puppy
  Passed:  Old Age - Choked on a bone ... she was gone by the time we got her to the vets

  Type: Australian Ridgeback/Labrador
  Color: Beige
  Sex: Female
  English Name:  Kisses ... She kept on giving doggy kisses in the face of the person holding her
  Passed:  Old Age - Total organ shut down

  Type: Australian Ridgeback/Labrador
  Color: Beige
  Sex: Female
  English Name:  Crums ... She would have crums around her mouth after eating
  Passed:  Kidney failure, hip problems

  Type: Husky/Labrador
  Color: Beige/Off-White
  Sex: Male
  English Name:  Patatoes ... He loved patatoes ...
  Passed:  Old Age - Cancer

  Type: Rotweiler/Labrador
  Color: Beige
  Sex: Female
  English Name:  As in Lollie-pop but my mom initially wanted to call her Wollie the 2nd but it brought up too many memories

  Type: Elsation/Labrador
  Color: Beige
  Sex: Female
  English Name:  Short for Jessica ... she was already named when we got her

Krimmel was the only exception to the rule as we obtained her after Soentjies but she passed away before Soentjies due to kidney failure and hip problems.

News on Jessi!

Wouldn't you know I am typing the blog we got news on Jessi...  The vet said he is very happy with her this morning as she is walking around, nudging the nurses and looking much stronger.  The X-Rays showed narrowing of the spinal vertebrae due to old age.  He said that she is too old for surgery but that medication should definately help her.

She is such a sweet heart!  I can imagine her bugging the nurses :D.  Always full of love, care and attention and would sit on your feet so she knows she is close to you, as she can't see you.

Phew!  What a relief!  Yet, this just shows that she is no spring chicken any more and some things are inevitable ... when, I won't know but at least I still have time to cherish her ... My sweet heart doggy!  She's getting a huge hug and some Beeno's when I get home!

Tuesday, November 18, 2008

Hobbies, Woblies and other this & that's

A while back, I decided to try and find an alternative hobby, seeing as PC's & playing music on Electronic Keyboards is not particularly conducive to my wrist ache's and pains ... ummm yea ... now I have yet another pet peve giving me grief which I am refusing to give up ;P.

My batteries in my R\C Helo died on me about a month ago, refusing to charge, so I went out and bought some new ones this weekend after spending an exhaustive time running around in gift shops and scrap-booking shops looking for something else and ending up empty handed.

I don't know wether it was due to the Electronic Keyboard playing on Friday & Saturday or from gripping the radio control with one hand while picking up the Helo (after crashing into the couch), but now my right hand's fourth finger, on the first joint, is hurting everytime I flex it.

To the "norms" out there, that would sound like just plain whinging over a sprained finger and I would have agreed ... had I been a norm.  Unfortunately, more-often than not, these things tend to be permanent.  Joint problems is a real pain ... pardo the pun ...  Sure, it's not going to hurt ALL the time, hiding away every so often and luring me into a false sense of security, biding it's time so it can leap out at the most inopertune moment ...  Going to the doctor?  Yea right ...  Unless something is broken and/or torn, there is virtually nothing my GP would be able to do, apart from giving me Anti-Inflams which is not going to do anything as the pain is not Inflam based but rather joint position based ... and which he would be reluctant to do in the first place given my families history with pain medication and the fact that too many AI's will start to negatively impact on your digestive system, especially liver and kidneys.

At any rate, complaints aside, I haven't had a LOT of practice with it, but slowly and surely I am getting there.  I can now at least hover it in one place without it weaving around like a crazy dragonfly on drugs, smashing into everything it can and being magnetically drawn to fixed objects.  My next challenge, will be to start getting it to move forward, back and from side to side without losing control over it, which becomes difficult as all the messing about with controls could cause it to end up in the wrong orientation, which is something I haven't gotten used to yet.  It's what is called "Nose in flying" when the helo is pointing towards you instead of away from you and somehow, my brain just can't figure out what's happening even tho it is as simple as the fact that the left, right, forward and backward is reversed.  One would think it simple, as land-based R\C's has the same issue and I don't have the same problem with them, however, given the additional dimention of up and down, as in flight, seems to confuse the issue... sheesh... weird...

I am however enjoying it tremendously ... apart from finger strains ... and one thing I must admit, thank goodness for replacement parts!  Even tho it is a "Trainer", with a dual rotor setup instead of a tail rotor and soft flexible skin,  things still break.  I had gone through 3 sets of blades, one main landing gear and one rear landing gear ... not to mention two confused doggies and stressed out furniture ...  I finally got some "Unbreakeable" blades which helped a heck of a lot as they withstand impact better than the standard carbon fibre blades.  The only draw back is that they are solid plastic and thus heavier than the more flexible and light carbon fibre blades  but that's not concerning me, as at this point I much rather prefer NOT having too much speed and lift.

Also, on another front, I have been on the ***** council for about two years now but it's becoming way too draining to visit ***** or even going to ***** council meetings.  I advised them yesterday that I am struggling with acceptance as well as energy at the end of the day and that I am not able to perform my duties as expected from me.  To my surprise, I get a response today, stating that they fully appreciate my situation, that I should complete the current round of visits on my own time and that they will be looking into getting me discharged.  Things are looking much brighter now, as I was really demorilised and depressed about not being able to perform my duties properly and having them understand, means a lot.

~ Drake ~

P.S.  If you were wondering why I was masking out ***** ... for some reason I just don't feel comfortable talking about it in the open ... and yes, that is a flaw, but Social Angst works in mysterious ways.  Also, my dad has taught me that there are two things you need to avoid discussing ... lest you become the target of redicule, ranting, raving, flaming etc.  and even though I wouldn't mind standing up for my self, this is not the place for that ;D

Friday, November 14, 2008

Good things come to thos who wait...

Initially when I started the blog, I mentioned something about a new job offer in the making...

Well, this morning, I signed a 4 month evaluation contract!  Yay!  It toke them long enough to get to this point but I think they were stalling so I would start in Jan, rather then Dec.  But I am sooo relieved!  Yay! Yay! and double Yay! or is that triple Yay?  Heck, counting the initial Yay it could allready be the 4th...and then again, I have just said Yay again a couple of more times...hmmm...  suffice it to say Yay!

The current position is just becoming too much for me to handle with a straight face and with a cool composure.  I am a perfectionist in a weird way...  When it comes to coding, I don't like making compromises, doing guess work or having to remember every single place that code was duplicated due to lazy/bad/poor programming, planning and documentation.  What's more, is I don't like the mentallity that some software houses tend to have, but I don't want to go into that, lest I jinx my self and the next company turns out to be just as bad/rotten.

I am not going to be running around looking for the impossible "perfect" job, but there is a lot of things I just won't comprimise on and I want to get as close to "happy" in a job as I can get...  After all, even tho I feel old as heck, I have to work at the company for as long as I am able to and I am still young.  Getting home miserable, irretated and annoyed by bad bussiness policies and poor standards, is not my idea of living.  We spend so much time at work and I feel a strong urge to be able to say that I take pride in my work and my code... and not that I feel proud about swindling some poor sap out of his hard-earned cash by selling him substandard products.

Now the only hangup is breaking the bad news to my current boss.  I don't have anything against the Company or the people that work there...just the way that they work.

At any rate, this is me saying YAY!  With a somewhat more upbeat post for a change... go figure!

Wednesday, November 12, 2008

Paranoia v.s. Irresponsible

I decided to take yanub's advice and just check with my opthalmologist about the visual experiences during my flight...

I spoke with him over the phone this morning, and he said he had no idea what would cause what I described but said that because the experience did not persist, there should be no risk or need to investigate further. At this point, I am just resigning to trusting his judgement...but it does bother me a little bit that most sites speaks of increased floaters as a symptom of a possible retinal detachment and he didn't even mention it. The other thing that bothers me, is the fact that even though he outright admits to not knowing what could have caused the streaking, he acts as if tho it does not need further investigation. Hmmm... I guess I am just paranoid due to doctors having missed the MFS diagnosis for so long and all the "Unknown" conditions I have to contend with in my body. Things like the palinopsia that is miraculously cured by the use of anti-epilepsy pills scares me. I still don't know what is causing it, the doctors don't know what is causing it but heck, seeing as the pills are making a closed according to them. I don't know, something about that just makes me very nervous.
It feels like I am walking a tight rope between Paranoia and Irresponsibility. Some people might say I am being paranoid and over sensitive, yet others would say that it would be irresponsible to just ignore it...  

In my view though, I am really not keen on another ghost hunt... It just demoralises me when medical professionals finds nothing wrong, yet there is definately something abnormal happening. Initially, with the palinopsia, I had gone through a barrage of tests, including expensive Brain-MRI's and EEG's just to end up with no answers and having pills shoved down my throught in a ditch effort to get rid of the symptoms ... the problem is still not identified and/or treated,

Uncertainty, is the biggest pain in my life. I hate uncertainty... but, what can you do. Doctors are only humans and they don't always have all the answers and it is far from a life-threatening situation, just a very real irretation.

Monday, November 10, 2008

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 an airplane at least...  It's just too much of an iffy feeling, in the air and the ground...


Tuesday, November 4, 2008

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 "", 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 want have to have one but still you know, there will never be one.

Why am I?

Monday, November 3, 2008

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...

Wednesday, October 29, 2008

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...

Tuesday, October 28, 2008

Drop, Stop and Roll...

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


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.


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, 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.


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'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...


Monday, October 27, 2008

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'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 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 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 might just wake up with a nose bleed...  Sheesh...

Sunday, October 26, 2008

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 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...


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 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 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.


Friday, October 24, 2008

Smile! You are about to swallow a camera!

I guess I need to first explain where it all began.  Two weeks ago, I was coming down the stairs at work.  It's a painfull labour to walk stairs in the first place but that's a whole different issue and a too longish story for right now.

My foot slipped on one of the steps and I started falling...  My first instinct was to grab onto the gaurd rail...but I couldn't risk hurting my wrists, the next was that I would have to try and somehow stop my self falling by trying to run down the stairs...but yet again, my knees wouldn't hold out and I couldn't risk my feet tangling them selves up again causing even more of a problem.

Now falling is one thing...but falling when you are 6 foot something is a scary's a darned long way to fall and after feeling the momentum of my fall and imagining my self falling on my face, cracking ribs and braking shoulders, I had no alternative but to kinda jump the last two steps.  Great idea in principle...if you are a healthy 29 yr old with healthy knees, healthy chest and healthy heart.

After the landing, funny enough almost cat-like, on my feet, I started doing damage assessment...

- Knees...  Hurting like hell, yet able to flex... [STATUS - NORMAL]
- Hips...  Hurting, slightly bruised feeling, yet able to flex... [STATUS - OK]
- Stomach...  Hurting [STATUS - WHO CAN TELL]
(It's always hurting at some point or another)
- Heart...  Bouncing like crazy [STATUS - UNDER CONTROL]
(The beta blockers should cushion my BP so it doesn't rise too high)
- Chest...  Hurting across the top?  Pain is fading fast tho [STATUS - NOT SURE]

So I started limping the rest of the way, not thinking much of the chest issue as it was fading very fast and I am no stranger to ribs moving around and causing chest pains...although this time, it wasn't my ribs that was hurting but more like my upper chest/shoulder area.

For half the week, I was O.K. ... or at least, that's what I thought.  When you are used to certain ache's and pains as a daily routine (and 29 yrs of thinking it to be "normal" ... long story), it tends to be difficult to notice "subtle" changes.  Thursday morning, however, I wake up with a nasty lump in my throught.  The kind that you get when you swallow your pills the wrong way and which causes a "Stomach Ache" kind of feeling in your chest, as if someone is shoving theyre finger down your chest... (Kind of forcefull obstruction feeling)

Saturday, I muster up the courage and go see my GP.  He looks at my throught...frowns and says it's "Raw", which is weird, as I don't have any noticeable throught pain.  Then he proceeds to push on my chest and as I yelp with pain, and surprise, he says my name in a weird questioning kind of tone that seems to ask "What did you do!?".  

Apparently, the fall had jarred my rib-cage, which sent my chest muscles into spasmism...the ache I had ignored...  which has...

- Inflamed my costochondritus (Inflammation of my chest wall)
- Caused my asophagus to be out of whack as apperently your chest muscles has a lot to do with your swallowing mechanism (go figure)  which in turn...
- Caused acid-reflux which in turn...
- Caused inflammation in my asophagus

Ok, so what does all this mean?  Anti-inflamatories and 6 hrly doses of Gaviscon (Man, that stuff's nasty...if you spill it and leave it out to dry, it turns into friggen plastic! )  The biggest issue tho...I would have to swallow a camera if it doesn't clear up in a weeks time...

For the better part of this week, things had been going smoothly and the "lump" had been slowly "dissolving"...then, on Wednesday night, I wake up with the stomach ache of the century, with aching shoulder and elbow and hand and what-not.

I stumble out of bed and to the bathroom, knocking ornamental plates from the wall as I go, but to no avail...nothing...  I stumble back to bed and curl into a ball of pain, untill it eventually subsides.  The following morning the lump has returned with a vengeance...

Now, getting back to today...

This morning is one of those where everything just decided to ache...  I have the lump in my throught, my chest ache's, my ribs ache, my shoulder-blades ache, my lower-back ache's, even my blasted heel's are tender and sore when I step on them.  Granted, a lot of the symptoms is most likely due to the friggen roadworks on the highway slowing traffic down to a crawl...but still.  With this throught lump and chest ache's all the other ache's and pains is feighting for attention and every small little one is popping it's head out.

It's now obvious that I am visiting my GP tomorrow...  and facing the nasty prospect of having to swallow a camera if he's not happy with my progress.  

I hate uncertainty... 
I hate being unsure of what is wrong with my body... 
I hate the fact that it might even be something silly or stupid that isn't even worth worrying about cus then I would end up looking like an annoying cry-baby... 
I hate the fact that it might actually be something serious and that I might end up in hospital... 

I wish these bodies of ours came with an instruction manual and a display with blinking lights indicating what is happening and where, like on a car's dash-board.

Oh Well, another day... the lump doesnt want to go away... and I am seeing my GP tomorrow... Oh happy day...