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G'day all, How they hangin'? The Little Old Lady who lives in WebTV wants me to write an account of me and my disease (Hmmm you could make a song about that last line *sung to the tune of "Me and my Shadow")

Just to set the scene, I was a carpenter and have been for around 18 years, well 10 working in the trade. On 29/8/90 I had an accident that was to drastically change my life for the worst. Whilst installing a 52kg tool cupboard to a wall, it slipped on the bottom bracket and fell down and go boom. The problem is it went BOOM on my left knee, "damn" I said (well you guys can use your imagination there). Yep it hurt, but not enough for me to stop working, silly me just kept on doin' my job for the rest of the day and half of the next day too. That's when my world shit itself! Lunch time that day my knee locked up, so I stopped working went to the doc, had all the tests and nothing much showed up, so off to physio I go. Well that did JACK SHIT! I remember when the ice was put on my swollen knee, it hurt, but hurt like nothing that I had ever felt before, the ice made it burn, but still nothing much out of the ordinary, I just thought the ice wasn't wrapped in enough towels. Well the knee kept on deteriorating at a rapid rate, so I was refered to an Orthopod doc. He did an arthroscopy and lateral release and found the entire retro-patella was bruised and a grade 2 tear or somethin' or other.

Again off to pyhsio, but this time the ice REALLY hurt, like nothing I had ever experienced before. It was like my leg was thrust into a blast furnace with 10,000 volt current being sent throught it as well. I can honestly say that's the first time as a bloke I cried and writhed in pain. This torture went on for awhile, before I said "ENOUGH IS ENOUGH!!!!!!!!" and got a second opinion. This doc told me that I had Reflex Sympathetic Dystrophy, I said "What the fuck is that?" He sort of explained it and said it will go away soon, that was 8 years ago. I have been through all the treatments in 8 years, told it was in my head, the colour changes that were happening in my affected limb were psychological and I should be better. Well guys guess what? I AINT BETTER!!!!! 8 years from the original injury this curse (now called Complex Regional Pain Syndrome or CRAPS for short) has become "GLOBAL" which pure and simply means it's in every part of my body nearly. I guess here in Australia where this disease isn't well known, I'm an "In Theory" case. OK just a little about this disease so you maybe able to better understand where I'm commin' from.

As the name Reflex Sympathetic Dystrophy implies it involves the body's "Sympathetic" nervous system. At the time of my accident I sustained a heavy blow to the top of the patella, which set into motion a chain of events that led to RSD. Rest & ice just added to it. RSD is thought to be a "short circuit" of the sympathetic nerves, that produces, pain, pain and more pain. There are some real kewl colour changes of the affected limbs that go with the curse, red to white to blue. Some of the other symptoms are, extreme sensitivity to touch even a slight breeze or the touch of bed sheets cause extreme pain. Swelling, yeah that's there, also burning no make that SUPER NOVA type burning that goes on 24/7. Insomnia, dry cracked skin, brittle nails, movement disorder, dystrophy, increased/decreased hair growth, osteoperosis and osteoarthritis. Vasoconstriction, that's where all the blood vessels in ya body decide to squeeze shut just a bit, reducing blood flow around the body. This also causes heaps of other problems, vision problems, short term memory loss, dental decay & kidney problems just to name a few.

Today as I'm typing this (18/3/98) I have just seen my pain doc and got more bad news, I asked for an honest prognosis (pretty fucking stupid huh?) and he gave me one. Seems that the curse wants my arms now and it's makin' plans for it's invasion, fuelled on by an abbcess in one of my teeth, the one that the insurers (one dickwad of a clerk named John Burn. "Hey Burns get ya head outta' your ass and read those doctors reports, ya wanker!") can't link to the RSD, even though they have 8 reports from different docs STATING that this is a direct result of the RSD and it's decreased blood flow aroung the body, the dry mouth from the meds and the decalcification caused by the RSD. My pain doc wants to put a Spinal Cord Stimulator in, which will help the legs but is a risk with any kind of infection present. He will do the opperation but will give heaps of antibiotics, before, during and after the opp. I will also be required to stay in hospital twice as long as is usually required and if the doctor notices any redness around the incision sites (2-3 of them) he will knock me out and remove the SCS. Now if this sounds like scarey shit to you guys imagine what it is like being this little black duck! I'm shitting bricks! Man when they mess with the insides of your spine you have just got to be so sure that nothing is gonna go wrong! I guess a "Golden Staph" infection is something that I haven't had yet, so I may as well try it.

Now as to the effects on everyday life, well as you could imagine everything is stuffed, from family life, to social life to everyday life. Before my accident I was a physical worker, played sport (tennis, squash, sprearfishing, karate etc etc) and had a pretty keeeeeewl social life. Now I don't work, don't play sport and have no social life. I have 2 children, both boys (Zachary 4, Timothy 2) who will never know what it is like to kick a ball around with their dad. Playing cricket with them is a pretty dull event, they hit the ball, 5 minutes later dad gets it and is just about ready to bowl it back to them. I feel for them, I guess because they don't know any different yet, but in time will realise as they get older that I am not normal and can't do normal father son things with them. When they go to school and a friend asks "What does your dad do for a job," they will have to answer "He is a vegetable and on Workers Compensation." I'm sorry I don't find the example that I'm setting for them is a good enough. Maybe one day I will be able to return to work, I have done it before. I retrained myself as a driving instructor and worked in that occupation for approx 16 months till the RSD went ballistic on my ass. To date the RSD IS in my legs & hips, arms, right kidney, jaw, spine. It is affecting my vision, hearing (tinitus & can't hear as good as I used to), memory short and long term, the shakes are a good one too, just love 'em!
20/5/1998 Saw my doctor today, more bad news!!! Due to the worsening of some of my symptoms and several other factors, my doctor and the visiting Professor have concluded that the RSD has crossed into the "Autonomic Nervous System" and to soon expect coronary problems. Palpitations started around 2 months ago, never did I think it was the RSD, UNTIL NOW! I hadn't told the doc this until he mentioned coronary problems too me. He said it's either the RSD or a brain tumour, the latter he's nearly 100% sure it isn't. So when you add up all the information, it boils down to being "Terminal". How long? no one can say. To explain what this will do when it reaches the pump, imagine your computer is being sent bad files and your computer doesn't know what to do. What does it do? It crashes!!!!! I'll keep posting every so often so you guys can know when it happens, sort of like the "Death Clock" that is at another site on the web. TICK, TOCK, TICK, TOCK, TICK, TOCK, TICK, TOCK.
9/6/1998 Status Report: STILL SUCKIN' AIR!!! All systems are go! So far so good (except if you were my insurance company LOL)!

The Court Date-John Burn Should Die


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