Wednesday, 18 March 2015

I don't know

"It's not so simple as I try to wish
But then again what is?
There is no other worthy quest
So I go on"

"I don't know" - The Beastie Boys

I'm baaaack! It's been an age since I've written. It's been an epic year and a bit in my say the least. 

Where do I start? Imagine a montage that goes something like this (just add dust motes mellowing on rays of sunshine with a peach tree in the background or something.) 

My all-too-short romance with the magic pill, Gilenya? Or the purchase of my first home with my lover? My new-found obsession with succulent gardens...or my brief dalliance with the ill-fated Tysabri infusions? Two changes of jobs, a relapse (two more lesions)? My ever-positive mother's stoic joust with spinal and brain surgery for meningioma? My go-karting "incident" or my drowsy reunion with Rituximab? Regular life? pfft! What is regular anyway?

Hmm, the imagery isn't quite right..... ENT surgeries, accidents, tragic family deaths, multiple births, milestone birthdays and anniversaries, unemployment, re-employment, wins, losses. Highs and lows. I'm tempted to just roll over and go to sleep again reflecting on what a year it's been. But to trot out a pretty lame-arse platitude, that's life! Right? Excuse me while I refill my wine glass. 

While my blog is ostensibly to share my experiences with MS, it's hard to not acknowledge all other aspects of my life. MS doesn't define's just one facet of my amoebic life that impacts and is impacted by all things that happen. I don't know about you but I think 2014 can just go straight up and get bent. 2015 is looking better so far... Many great things have happened, don't get me wrong. But...crazy shit is happening everywhere and as a result I no longer watch or read the news as fervently as I have in the past. I use social media far less. I write more, read more and garden more instead. It's one of those times some of us have where we decide to hit pause or slow-mo on life just to get by. It's not even a bad thing. How can it be when it feels so necessary? 

Ok, that's the deep shit out of the way! So many FEELINGS. How do you feel? Hunky-dory, I hope.

I'm trying to master the art of Zen-Cool. It's not a thing. I just think Zen as a principle or way of life is way cool and so I made it my hybrid-thing along with my singing bowl. BAM. I haven't worked out the nuts and bolts of it yet, and there probably won't be a self-help book about it out any time soon (not from me anyway). It's my chosen approach to muddling my way through an emotional and physical minefield. Ooh, I sound victim-y, I don't want that...I think it's a hard time right now, that's all. And like all hard times they too shall pass. "Why shouldn't I share this?", I'm thinking to myself. I'm also thinking, "OMG. This is too heavy!". Quick, hand me a tabloid zine, stat. I need to know what Kimye is/are (?) doing!

The truth is I'm alive; happy, yet back on the treatment merri-go-round and restocking my arsenal with new ammo. I'm discovering a world of new treatments thanks to my awesomely radical mum. I'm having new experiences and learning to be calmer. It's a perpetual work in progress.

After a minor relapse following 9-odd months on Gilenya, we bought a zoo house [insert crazed home-owner rant about painting stuff and hanging art WHEREVER THE HELL I WANT] and then I went for a ride on the dreaded Tysabri train. I was terrified, but as usual it normalised rapidly. Monthly infusions on a Thursday afternoon. Leaving work headed for the Princess Alexander Hospital at midday. Getting jabbed and prodded, drugged, then sleepy times. Meh. After about 7-8 glorious months I bloody relapsed AGAIN! Another week in hospital. Another headache for my specialists. More grey hairs and sleepless nights for my loved ones. My balance and eyes went again, as is their wont. Turns out there were 2 new lesions.  I have my first legit sequilae (upgaze nystagmus to the right for those who know what I'm saying). This disease has got to go.

It was a scary time. No other treatments were suitable. Steroids, tick. IVIG, tick. Rituximab, tick. Interferon, tick. Gilenya, tick. Tysabri, tick. The only other treatments were "soft-core", in the same vein as interferon or too risky with my depleted immune system.

My docs were flapping in the breeze, sharing meaningful eye contact, while I stood there exposed like a human eroteme looking for answers. I was once again a problem patient. While my specialists collaborated I focussed on good, holistic living. My wonderful mum sent me to her massage therapist, her hypnotist, her astrologist and I was spoiled like crazy. Meanwhile, mum was facing some terrifying health problems of her own. She had neck surgery and 4-5 months later had major brain surgery to remove 2 very badly-placed meningiomas. It was The Pits. While close friends welcomed new babies, I was too exhausted emotionally and physically to respond with the appropriate (and necessary!) enthusiasm or energy. I still am.

The doctors collaborated and decided the last chance Texaco was to undergo a Rituximab de-sensitisation. Because I developed an allergy to it back in 2012 I was readmitted to the immuno ward for a super-drugged-up and super-slowwwww double dose of the chemo treatment. I survived (hoorah!) and felt only moderately like a warmed up piece of poo-pie for a couple of weeks. 

Then, days before mum's surgery, I had a rather hilarious (in hindsight, anyway) go-karting accident in my street. It's a long story. After fainting with a concussion and several 3rd degree burns I had another visit to the ED. I healed (with some new scars). Mum was and is still recovering (heroically, I might add) brilliantly, from her mega-surgery. You can't make this shit up, I swear. I challenge you to write a better drama synopsis!

Then we had Christmas (allegedly) and new years...hmm? I also got a permanente jobola! Hazaar!

Early January saw the doctors INSIST, DAMN IT that I take a daily dose of Azathioprine (old school immuno-suppressant) and a prophylactic [read: daily] dose of Bactrim antibiotics to avoid pneumonia. SNORE. While I like to feign ennui over the whole scene, the reality has been WAY HARSH. I have felt like crapola 90% of the time since then BUT at least I'm not in hospital. RIIIIGHT? yeah. 

So what's the shakedown, you ask? Let's face it, if you have been reading my blog and STILL follow after an eternity of radio silence, I am 2 Legit 2 Quit. I'm not sure of what's around the corner and right now I'm happy to be a pretend nihilist and pretend like nothing matters, ever, at all, the end.

My eternally patient and loving Wolfgang and step-children are a joy. I'm working full-time, which is a challenge unto itself. (Mad props must also go to MS Queensland for supporting my work/life balance program) I volunteer for YoungCare Australia when I can. I can still see/walk and therefore life is good. Simple. I just need a leg massage. Anyone? 

That's it, a little to the left...ahhh.

Let's forget what this blog is about for a minute and dig on some Beastie Boys. You with me?