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.