Monday, January 26, 2009

Here I am...zzz...uh...Oh, sorry, dozed off...

Well helloo....

I guess it's been too long since I blogged but the last month(s) or so, has been a bit ragged. Apart from my modem being fried by lightning and the new job having a bit more restrictive internet policies, I am starting to have major fatigue issues and I don't know why. Every moment that I am either not eating or working, I just have to sleep. I lay down for a "second" of rest and I find my self waking up four hours later. I do nothing but sleep over weekends and during the week, I go to work, fight blurry-eyed to stay awake, get home, eat and sleep...

I know, I have to get to the doctor at some point but what do you tell him? "Duh...I sleep too much..."

I actually did want to go to the doctors this weekend but I had a Marfan's meeting. This was the first time I went to a S.A.M.S.O. meeting and it wasn't all that was actually hillarious. My parents went with me and they were gawking at the people walking in as we waited for the meeting to start... They had a 99.9% success rate at guessing who was coming to the meet-up... They recognised me in almost everyone that was there. Initially it was a bit of a tense situation as they wanted to discuss ending the organisation due to a "lack of interest" but after seeing the turn-out, the voting was a mere formality as there does seem to interest after all. I guess the major reason why the "community" gets so silent is because the major areas that research focus on is the heart and the eyes. All the other probelms (Alltough they are more prominent and actively irretating on a daily basis) are secondary and too diverse.

The lady was very helpfull and had all the answers if you asked about the right topic (i.e. Heart & eyes) but when it came to other anomilies...the general response was "Shrug, That's Marfan's".

After that, the doctors was allready closed and my folks didn't want me going to after-hours consultation as it would cost me twice as much. I can't stay away from work either as my problems are generally not always diagnoseable (It definately exists but the doctor just says "It's because of the Marfan's" and that's it) in which case the doctors note might read something like "Marfan's Issues"? I doubt if the company would accept that as a valid sick-leave, especially if it occurs more than once.

My intestines drive me crazy with irretating ache's and pains but it's not enough to go to the doctor and have him find something other than "Indigestion", give me a script for it and still have no change by the time the script is finished. My chest pains regularly and my whole body jerks, from my heart thumping away, when I lie down but it's not enough to phone an ambulance stating "Ack! I am having a heart attack!". I ache allover in twenty different places twenty times a day and I have become so used to it that if you asked me how much pain I had during the day I would say in all honesty "None".

As for developments in the Marfan's community and some general information:

- Losartan (Experimental drug used for aneurisms):

They are busy with human trials after the successfull completion of trials on rats but it is available for patients with severe aneurism of the aortic-root. The drug however, significantly reduces blood-pressure and like Beta-blockers has side affects and therefor is only available after carefull concideration by your Cardiologist. Note also, that in order to qualify for medical assistance, this medication (As with most other medication) should be prescribed for the actual problem arrising from the Marfan's and not for Marfan's in it self. Suggested prescription is something like "Blood Pressure control" rather than "Aortic rupture prevention due to Marfan's".

- Dural Membrane Patch

Medication has been available for some time, to seal up holes in the dural membrane after having had an epidural or spinal tap. This medication is however now also available to Marfan's patients having Dural-Ectasia with rupture of the dural membrane due to it. Once again, the medication has certain consequences and should be used under advisement.

- Treatment of Spontanious Pnuemothoraxis (Lung Collapse) with Chemical bonding is NOT ON!

There is three solutions to the treatment of lung collapse (Which is very frequent in Marfan's patients). The one solution however, which involves medicine that chemically bonds the lung to the chest wall, and so doing keeping the lung inflated should, under NO circumstances, be concidered for Marfan's patients as Marfan's patients will undoubtably need aortic surgery at some point in their lives and having your lung attached to your chest wall will severly complicate and hamper such surgery or any other corrective surgery partaining to the heart or aorta.

- Foot and hand surgery in Marfan's patients has a VERY low success rate

Corrective surger of the feet, toes and hands (Especially surgery such as Carpul Syndrome surgery) should not be concidered lightly by a Marfan's patient. There is an extremely low success rate for these surgeries in cases of Marfan's and should only be concidered if it is the ONLY solution to improve mobility. The surgery will either not give any improvement or fail horribly, leaving the patient with even less mobility.

So...that's me for now... Hope I haven't been missed too much ;D

Keep Well


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!