16th May, 2013…Inspirational Blog by Mark Rostoks- ‘Overthrowing Adversity – The Battle Continues’

Just quickly a little about me: I’m a young bloke (34) who became ill 10 years ago with a chronic neurological disorder. And as you might guess my life basically slipped away – hospitals, health, treatments blah blah blah… well that was until about 2 ½ years ago when I started my bucket list.

You see I’ve been lucky enough to meet some pretty amazing people & do some extraordinary things… It has literally changed my life! (And yes I have kissed Miranda Kerr too haha) It’s been a pretty wild ride!

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Now I should also mention here that my bucket list is a little different to most (no running with the bulls for me) you see I’m actually quite disabled; well a quadriplegic in fact. So I had to come up with a more realistic list (equally diverse in the range of challenges) yet with the primary goal of getting me out and about living life again – I mean I’ve already let far too many years just slip away! And I suppose to me this is what a bucket list is all about - It’s about challenging yourself and achieving things you might normally see as unattainable – and of course living a fulfilling life. My list has surely helped me do all of that and more!!

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Anyhow moving right along… a tad away from all this bucket list hoopla – so how did I get this sick? Well it’s pretty obvious when most people meet me they instantly think accident; only strangely no!! It’s actually something way more trivial… I got bitten by a tick whilst holidaying in Europe (Yep win!). You see unbeknownst to me [at the time] it gave me a virtually unheard of bacterial infection known as Lyme Disease – oh and yep from that day forward my life did fall apart (2003). Still to make matters even worse, even with this ‘treatable’ diagnosis it poses countless problems which stem from a worldwide conspiracy as to its treatment, and even more specifically here in Australia whether it exists at all! So all of this… the conundrum of getting an effective treatment program… constantly feeling crap – it’s all drama, drama, drama!! Welcome to my life!!

And basically what I’m trying to get to is… sadly this is where I’m at – my bucket list (something that gave me true joy & fulfilment) has been all but put on hold because of the adverse effects of the illness itself (and due to my current treatments); I’ve just become too sickly. I’ve got not much left in my life apart from an inevitable battle with this potentially fatal disease, ohh yeah jackpot baby! So you might say all I have left is my bravery & my willpower; apart from that I guess I’m a very lost & lonely individual who’s somehow still happy too… weird ey!! (thank god there are a few friends & family who still care to be an active part of my life) But irrespective of this sob story… one thing I can still do is write/vent (much thanks to technology) – so I do still have my freedom of expression – and I try my best to use it! (Hence this post)

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Ok if you haven’t quite worked it out already that’s kinda what this is about – Seb’s given me a bit of a chance here to hopefully help raise a bit of awareness about this undervalued illness – Lyme Disease. Alright admittedly this has been a tragic story thus far but I suppose that’s just the nature of this retched disease, still I’m constantly working on turning it around. Only I’ve kinda hit a road block for the time being purely because I have Lyme’s Disease & live in Australia – I can’t really progress with my treatments here in the ‘lucky country’ – or maybe a better way to put it is I’m finding it bloody hard to move forward. Now hopefully to explain this a little more in-depth, below is a question I answered for a journalist a while back – it gives a pretty succinct insight into my current circumstance. (Sorry if I’ve repeated myself)

How do you feel about the Australian Health Authorities ignorance towards recognising Lyme disease in Australia and do you think this affects you in any way?

 

Wow what a loaded question! How do I feel about it; well it’s absolutely disgraceful!! I just don’t understand how an illness is commonly recognised worldwide but not here in Australia. Ok admittedly Lyme Disease is an emerging illness, and yes I do understand there has been much debate and controversy regarding its treatment worldwide, only Australia seems as if they’re hoping to ignore it and it will go away – not to mention totally disregard any new treatments that have become available.

I mean Australia’s blanket policy for LD treatment is a 2 week oral antibiotic therapy whereas ‘standard’ treatment in the US is one to two years IV antibiotic therapy (well for a chronic condition like mine anyway). Is it just me or does this seem a little out of whack?! You see the Aussie Authorities stance on LD is ‘It does not exist in Australia’ which in my eyes anyway is so narrow minded and naive – hence there are no ‘up to date’ treatment protocols. Well I’ve got news for you… people do travel and I’m sure the Australian quarantine isn’t flawless (and I’m sure that’s not even the tip of the ice burg). So keeping that in mind (or even if there is an exclusive strain of LD in Oz who knows?!), but I’m sure that I’m not the only one who’s falling through the cracks. In fact I’m certain there are many others out there just like me and don’t know it!

Now more specifically to my own case, I did get sick whilst travelling abroad (Europe – and in an area renowned for Neuro-Lyme cases), and I have been confirmed as having LD by a specialised laboratory in the US (as there’s no adequate test facility here in Oz). In addition I have also tested positive to another tick borne bacteria which is recognised here (rickettsia), a spinal fluid abnormality (consistent with Lyme) and I could also list 1000’s of symptoms that can’t be purely coincidental (amongst other things!!). Yet I’m still subject to the ignorance of Australian doctors and their blanket 2 week oral antibiotic therapy policy; and as a result I’m really struggling to get effective treatment. Admittedly I have found a doctor willing to look outside this box, only I’m (or we’re) still subject to a great deal of bureaucracy; and I still can’t get the ideal treatment that I need!

Ok so one good thing is that I’m now on the long term oral antibiotics (not to mention injections in the butt) however I really need a PICC line (Google it if you like) to administer the IV – which my Dr is prepared to do. (Now this is the problem), in order to get a PICC line put in, it’s a hospital procedure through the radiology department [in which lies a problem]. You see being a hospital procedure [and a pretty invasive one at that], the ‘powers that be’ aren’t prepared to put in a line for an illness that supposedly doesn’t exist in Australia – I know, I’ve tried! Actually I had a meeting/argument with one of the big wigs at the hospital just the other day – you know I reckon I might’ve had more luck talking to a brick wall! Basically all I got was ‘Australia’s official stance on Lyme treatment is a two week antibiotic therapy; that is all we can offer at this point in time’; but I did manage to get a referral to the infectious diseases department – so we’ll see what happens there?!

(Recent developments I might have found a very unconventional way to get a PICC… might!!?)

Nonetheless I believe my treatment could be much better, and I do feel like I’m being held back by bureaucracy… I mean at the moment I’m trying to juggle treatment through two doctors here in Melbourne, one in Sydney and a specialist in America – Sheesh even then it’s a battle – and hey I’m no doctor! Really all I want to do is get better, or at least have a bloody good shot at it, is that too much to ask!?!?

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Look who knows what will become of all this Lyme injustice in Australia, hopefully recognition & effective treatment protocols put in place – and for me a miraculous tale of recovery! And to be even more specific to 100Things hopefully both Seb & I can do a few more ridiculous bucket list items together – always a blast! However I can say two things: (apart from learning about Lyme) I’d hope that reading this might give you an appreciation for what you’ve got even more (of how lucky you are), and hopefully give you the initiative & imagination to take advantage of the gift you’ve been given!

Because after all life is a gift (and trust someone who’s fighting for theirs)… don’t let it slip through your fingers! Regret is not a constructive emotion.

~ Mark ~

 

For more information on Lyme Disease visit:

www.karlmcmanusfoundation.org.au

 

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