good riddance 2008: year of the hell

Monday, December 29, 2008

Dear Audy,

I do hope that you are greeting the new year with a little more joy than me. I am bummed out, Audy, buuuuuummmmmmmed out...My left hand is killing me, I can barely focus on anything and I am so bored of it! This is too much pain, just too much! My doctor's office doesn't even reopen until Jan 12th, so I'm just stuck like this until the 19th, when I'm going in for a ketamine infusion.

I have been organising my photo folders today...not very exciting but I could do it with one hand and now they all have dates and are easy to navigate...it brought about an extremely mild feeling of accomplishment...and I'll take what I can get!

I can honestly say that this year has been the most painful and frustrating year of my life. It all comes down to the fact that in 2006, I should NOT have worn these shoes to the races...


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...because they ruined my life. These shoes are evil (and are now someone else's problem, that's a shot for ebay *wink*). After a year of crutching and fighting to get better, I encountered nothing but further pain in 2008, including a hip operation, dislocated jaw and the spread of RSD right through my body. Fun times.

Thus, when trying to find something good to reflect on I am really struggling! I am giving up on that as it's depressing me, instead I am going to keep looking forward...may 2009 be the year for healing and recovery! May ketamine be the answer and may it give me some semblance of my life back...because I'd really like to get back this life...


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...and leave the couch based one behind! Good riddance 2008.

Thank you so much for all your support, wishing you a safe and happy new year filled with lots of exciting surprises!

Love & Good Riddances,

Caf

P.S. Video updates coming soon...

my reflex sympathetic dystrophy (RSD) story part 4

Tuesday, December 23, 2008

Dear Audy,

Merry Christmas!! I hope that you were prepared early this year as I sure wouldn't want to be battling the last minute Christmas shoppers...I also wouldn't want to be anywhere near Chadstone (ridiculously large shopping centre).

I have already munched my way through one Chrissy lunch...years ago my family started splitting Christmas into two days...I think that's technically what Boxing Day is for...I don't know about this 'Boxing' business. Anyway, I highly recommend two Christmases, no matter which day you have them on, as it gives you a chance to fully appreciate both meals...and I think they deserve it...especially the ham, the ham really deserves honouring.

Just below this babbling you will find my latest video. I have really been struggling with pain over the last couple of days. Both of my hands are flaring and making life really bloody difficult...when they aren't on fire they are getting stabbed. The bones feel kind of porcelain like and overall, I think they look rubbery. Especially when I wave goodbye at the end of this clip, it looks like I'm holding up a fake hand and shaking it...kinda creeped me out a little, thus you get a warning...like that creepy ad where the kid has no back to his head...that ad makes my neck cringe.

Anyhoo, Audy, this is me telling you about how a year into my battle with RSD, I needed hip surgery. It was rather scary and dramatic...pain can do that to situations.

My Reflex Sympathetic Dystrophy (RSD) Story part 4


I know that by now you might be thinking, “Geez, Caf, how bloody long is this thing gonna be??” Unfortunately, my body just started spiralling out of control and it takes some time to do the telling...thank you for continuing to listen!

I hope Santa is kind to you, Audy, and that you get stuffed full of pudding!

Love & Baubles,

Caf

my reflex sympathetic dystrophy (rsd) story part 3

Thursday, December 18, 2008

Dear Audy,

It has been a busy couple of days but I can happily report that Billy Elliott, which is currently playing in Melbourne is fabulous, it is amazing how many talents that little boy needs to have! I can also report that Alicia Keys is amazing live, has fabulously amusing back up singers and should never wear high-waisted skinny leg jeans...neither should you. Finally, I can report that two nights out in a row makes Caf a sore girl!

This vid was recorded yesterday. I was pretty sore so I wasn't quite able to keep my thoughts together enough to get through all of what I wanted to say, but I do get through an explanation of what RSD is as well as some of the treatments. I have just today booked in for the ketamine infusion that I mention in the clip, hopefully this will be the answer!

My Reflex Sympathetic Dystrophy Story part 3


RSD Information & Support

RSDSA – Reflex Sympathetic Dystrophy Syndrome Asscociation

International Research Association for RSD/CRPS

The Australian RSD Support Group

RSD aka Really Sucks Dystrophy facebook group

Rock Out To Knock Out RSD

Sarah Rutgers Page

By the way, yes that is Luke Perry on my t-shirt. Just underneath that awesome image it says “I slept with Dylan first.”

Thanks for watching, Audy, please feel free to share these videos and help me and other sufferers to raise awareness of this poorly understood condition.

Love & Concerts,

Caf

is southland tales so bad it's good?

Wednesday, December 17, 2008

Dear Audy,

In all my excitement of starting a new video blog to play with, I forgot to tell you that the latest episode of the So Bad It's Good podcast is now up for your listening pleasure.

In this ep you will hear what we have to say about Southland Tales, which is the director's follow up to Donnie Darko. You can just listen online or subscribe through Itunes to receive forthcoming updates!

Click here to listen.

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I am currently uploading the next installment in my Reflex Sympathetic Dystrophy story. In the next clip I am explaining a little about what RSD actually is and how it is treated...I also talk to a stuffed giraffe.

Love & New Stuff,

Caf


my reflex sympathetic dystrophy (rsd) story part 2

Monday, December 15, 2008

Dear Audy,

Before I show you the next installment in my Vlog, I should probably post a couple of disclaimers...as I tend to ramble....Despite what I might say, in no way do I mean to impune either facilities officers, nor the goth community at large. Emo kids, though, those are there to be laughed at...but in another disclaiming revelation you should know that at no point do I mention emo kids...The final thing that might require forewarning is that at one point, I actually do say “By Golly!”

I hope that you are enjoying my story...I have realised that I am rambling on about RSD and that I am yet to explain exactly what RSD means, I'll give you a bit of a medical explanation in the next clip.

In this vid I am talking about what it was like the first year that I had RSD.

My Reflex Sympathetic Dystrophy (RSD) Story part 2


In other exciting news...Yesterday I had the privilege of watching a kids drama class perform a script that I wrote for them a few months ago. They were all into Friends thanks to reruns, so a Friends spoof is what they got. They did a fabulous job and made their teacher and I very proud! The less cool part was that the performance was included as part of a dance concert, which would normally fall into my 'awesome' category, but with incompetent sound mixing fell into my 'omfg this is painful' category. I did have to literally cover my ears at one point. I also get mad at dance teachers who have the kids miming to the lyrics...I don't care if your music has lyrics and you're 6, dancers don't mime! I also managed to set off an RSD flare in both my forearms/hands by applauding for the tutu covered children...that'll learn me.

Love & Koala Cuddles,

Caf

well, here it is...my first video

Saturday, December 13, 2008

Dear Audy,

A fellow RSD sufferer, Sarah Rutgers, posted an amazing video recently. It was amazing because she allowed herself to show the dark and lonely side of RSD. I felt like she was talking from inside my own head and I don't think I am the only sufferer who found that comforting...not comforting to see someone in pain but comforting to know that I am not the only one who feels like this.

Since watching Sarah's, I have been feeling inspired to tell my story on video. I can't delete and rewrite what I'm saying as I go, so you're just getting me as I am...random blank pauses included. RSD is an evil, silent monster, it has also only become a recognised medical condition in the last 20 years. My aim as I set out on this Vlogging journey is to help bring awareness to this life debilitating problem and to hopefully create something that other sufferers can relate to.

My Reflex Sympathetic Dystrophy Story - part 1


I am sorry I didn't finish explaining the relationship between heels and corsets...I'll get back to that next time, I am easily distracted!

Love & Visual Aids,

Caf

P.S. Lessons learned: youtube can take a LONG time to process videos; youtube can choose really fantastic frames for the still view!

the completion of ada

Tuesday, December 9, 2008

Dear Audy,

The fifth imaginaiad is finally complete! Ada has taught me a lot...most importantly that the paper I was using was not thick enough and it got a little worn and buckled. It made her a little hard to photograph, she's been cut out digitally so the uploaded image is not quite true to form...but close enough.


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She is most excited to be complete and looking very forward to framing. You can check out a larger version of her here.

I'm continue to be absolutely fascinated by these colours in my head...I have always had a knack for remembering birthdays, I still remember the birthdays of people that I haven't been friends with in years. One of my oldest friends has her birthday on March 23rd. For some reason, I always had particular trouble remembering her birthday, I kept confusing March with April and the 23rd with every date from the 22nd to the 28th. I've now realised that this is because March and April are very similar shades of red (April is quite primary, with March slightly oranger) and that the sequence of numbers from 22-28 is also red (slightly darker than April). The colour confusion doesn't stop me remembering her birthday anymore, I've spent a lot of time concentrating on memorising it, however it certainly highlights the way in which my synesthesia has been assisting my memory of dates.

I just realised that the way I remember the date now is specifically in black, just like the text on a printed page...perhaps my brain needed to eliminate colour completely in order to overcome the confusion it was causing....interesting.

Hope you are having an inspiring week, Audy, and enjoying all the Christmas sparkles!

Love & A Satisfied Sigh,

Caf

synesthesia....my world of colours

Friday, December 5, 2008

Dear Audy,

I have spent the last few days in a painful blur....an evil flu type bug got me and shook me up and spun my weakened insides until I curled up in a ball and cried. I finally went to the doctor and got me some antibiotics and I am feeling a bit better today...no parts of me are stabbing me right now so that is nice.

I have been reading a fascinating book, Audy, Musicophilia by Oliver Sacks . It explores different ways that music effects the brain and recounts tales of people who's brains are fundamentally different than the norm and the ways in which their perception or interpretation is altered.

I find evolutionary theories compelling, Musicophilia has introduced me to a couple and one in particular that dances through my brain...imagine a world in which humans had developed to communicate through music over language. It has been theorised that perhaps the physiological reaction that music can bring and the emotional response is an undeveloped communication faculty. People who have absolute pitch can hear each note distinct from all others, similar to how one visually perceives colours as being distinct from other colours; for example, it is common for people to be able to locate notes in relation to other notes such as recognising C and thus being able to identify A in comparison, however identifying blue only in relation to red is something that might seem ridiculous. A person with absolute pitch could tell you what note the cicadas were singing, or what note the pots hit when you dropped them on the floor. If the majority of humans were capable of absolute pitch, then it would seem possible that perhaps notes and the emotional reaction they induce could be used as a means of communicating...such as the alphabet is.

The most exciting chapter I have read to date is entitled The Key of Clear Green: Synesthesia and Music. It has introduced me to the very concept of synesthesia, Sacks explains, 'For a true synesthete, there is no “as if” - simply an instant conjoining of sensations. This may involve any of the senses – for example, one person may perceive individual letters or days of the week as having their own particular colours; another may feel that every colour has its own peculiar smell, or every musical interval has its own taste”.

When I read the above I stopped and hit the page and exclaimed “Hey! I do that!” For as long as I can remember the days of the week have had their own colours. They are always the same colour, however the transparency can vary dependent on the importance of the day, this is something I have always used as a memory tool. The day itself is also broken up by transparency if I am thinking of the day alone, the morning is lighter and slowly gets darker toward the evening. It's something I have always taken for granted, that peripheral part of my brain that I don't always pay attention to kind of thought they were colours that had been imprinted from watching Play School, but I don't see how that would explain the transparency thing....this is my week in colours:


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The months of the year also have colours in my head and numbers seemed to be grouped into colours. It takes a weird concentration to think about them consciously and the more I do, the more I realise how many things in my brain are being recorded and stored using colours...I'm starting to think that this is how I see everything. It's not that I don't perceive the actual colour of things, but it's like when I remember them I drop them into the blue, or the red, or the weird colour that I can't even name box.

Songs have colours. I have recognised these associated with lyrics and it's how I remember them however, until now, I have never paid attention to colours swimming through rhythm or the way different instruments have coloured tinges that distinguish them from one another...but they are all there, they have just been kind of operating unnoticed all this time...I have known for a long time that I remember things visually, however I just never noticed that the visuals have this kind of unwarranted 'coloured' aspect.

The most interesting thing I have contemplated so far, Audy, is my imaginaiads. You can check them out here. I don't consciously choose their colours, they just happen, kind of like they choose themselves and they are very exact, right down to their faces, it is something I see rather than make up...if that makes sense. This sense of seeing usually extends to naming also, they have their names and all other names simply sound wrong to me, kind of like if you tried to convince me that that table is a beanbag. I am starting to think that on some level the imaginaiads I see are some sort of interpretation of the colours I associate with a person or what I know about a person....

I've written a lot today, Audy, it's just so fascinating! Do you see colours where there are none? It's so exciting to discover that it isn't just me...

Love & Rainbows,

Caf

P.S. I feel more research coming on....