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?

Tuesday, 30 April 2013

Science Fiction

 "I thought that love was science fiction
Until I saw you today
Now that love is my addiction
I've thrown all my books away"
The Divinyls

It's alive! It has been about 5 months since my last blog post and I don't know where that time has gone. Sucked into a black hole and gone forever....until I work out how to bend time and live it in an alternative dimension. You may think I have lost my marbles or you may think I have been reading too much Stephen Hawkings and the like. String theories, quantum physics etc...Maybe it's a bit of both...

Around the time of my last blog I started taking interferon injections at home. What a clusterf*ck that turned out to be! I experienced terrible side-effects that seemed to get worse as time went on. I suffered horrible fatigue, constant headaches, muscle and joint pain, frequent fevers and hyper-sweats - and that's just a few of them. It was not the treatment for me. After a particularly bad night following an injection I decided to quit them cold-turkey. I don't think it's recommended to do this but I told my doctor I couldn't do it anymore so I just stopped. Since then I have felt AMAZING. It turns out that the old drug (Rituximab) was actually still suppressing my immune system so I am a little frustrated that I had to go through 5 months of hell for nothing! I've had a couple of hospital visits with weird symptoms recently but generally I am feeling pretty good.

Having said that, my B cells are now recovering from the Rituximab and I can't have it anymore because of my allergic reaction last time. My neuro and I have been debating, arguing and stalemating on what drug I should go on next. I am now actually 'unprotected' from MS activity at the moment and that is not ideal. I have a choice between two drugs that I am terrified of and I am going through somewhat of an existential crisis. Do I not take anything (apart from eating VAST amounts of colourful vegies and liver - yes, liver) and risk another bad relapse OR risk feeling great? My neuro is confident the next one will be bad. Do I take the 1 in 1000 to 1 in 10,000 risk of getting an irreversible brain infection and take Tysabri? Do I risk the varied side-effects of general immuno-suppression (including blindness, hair loss and heart problems) and take Fingolimod? These are my only real options. My doc thinks I can't afford to NOT take a treatment. It's a rock and a hard place. I keep hoping for some kind of devine sign from the universe but then  I remember that the universe doesn't have an opinion and really doesn't give a shit. I'm just in it. I wouldn't mind living in an alternative reality right now! It's all Science Fiction - or Non-Fiction in this case. The decision is practically impossible to make so I am giving it TIME. What that will do I don't know. I have about 3 weeks before I have to start on a treatment and after I get the myriad tests results back I will hopefully be closer to a decision. BLAH. It's horrid and sometimes I just want to swap my skin with someone else! Not to make a skin-coat like Buffalo Bill, just, you know, to be someone else. There are many redeeming qualities I possess as a person, I'm sure of it, but MS takes up too much of my mental and physical stamina sometimes I just want a break. My need for escape has had some positive effects on my creativity though. I have been sketching again and playing with my violin (still badly). And the author in me wants to write a tome. The chef in me wants to feed the world crazy vegetable concoctions. Maybe I should whip out my wig collection and just pretend to be someone else today. I have a Chrissy Amphlett wig, a Morticia and a hot pink bob - ala Julia Roberts in Pretty Woman. Oh, and a Robert Plant! I think I'll be Robert today. This gives me a nice segue to THE SONG. Science Fiction is a great tune (and relevant as my life often feels like one long sci-fi episode) - Chrissy Amphlett was even greater.

Chrissy Amphlett died last week after a prolonged battle with Multiple Sclerosis and Breast Cancer. It has absolutely broken my heart. I have idolised her for decades. I LOVED HER. I was a mental fan of hers from a young age. She was just so rockin and cool and untouchable to me. She lived down the road from my parent's place when I was in high school and I have fond memories of stalking Chrissy down the aisles of the local supermarket with my big sister beside me. She would always wear oversized dark sunglasses and big furry collars. She seemed to float rather than walk and she made grocery shopping look tres cool. She was very gracious because she didn't seem to mind two giggly teenage girls shadowing her every move - and we thought we were so inconspicuous! My Dad went to her house to give her a quote for some French polishing and he was pretty chuffed to tell us all that she was flirting outrageously with him. We all humoured him and said' "sure she did, Dad!" She appealed to everyone. My mum loved her too, despite Dad's wild imagination. It is tragic to lose such a talented, incredible person who was so integral to Australian rocknroll. And she was young. I was going to write her a letter last year (my first ever 'fan letter' to anyone) but I procrastinated and now I regret never getting around to it. I would've said thank you for sharing her voice and songs, for the inspiration (and dance moves/pouts) and for showing me how to face scary health issues with stoicism, dignity and optimism. 

RCK'N'FKN'RLL, Chrissy.

Friday, 23 November 2012

Thrift Shop

 "I wear your granddad's clothes
I look incredible
I’m in this big ass coat
from that thrift shop down the road"
-Thrift Shop by Macklemore feat. Ryan Lewis -

OK. This title and song have absolutely NO connection, not even a tenuous one, to this blog post today. I just LOVE it to a ridiculous level and LOVE the video clip more. And I LOVE CAPS LOCK. More about the song laters...

Update on the saga that I like to call 'My Life', or 'Dr Strange Walsh: How I Learned to Stop Worrying and Love the Hospital'. A week after I had the infusion reaction to the Rituximab (which turns out to have been possible start to Stevens-Johnson Syndrome - a very unexciting name for a very exciting way to DIE) I finished up in my Government job. I took a redundancy and after 10 days at home was going completely loco from boredom. I decided spontaneously to book a holiday overseas. My amazing and hairy (thanks to Movember) partner was so cool about it because, well, it was a solo holiday. I didn't ditch him, it was just too difficult for him to get time off and organise our time with the kiddos for him to join me on my really unnecessarily short timeframe. I just had to get away and the sooner the better. I was all, 'I'm bored! I don't have a job! I'm sad! Boo frigging hoo. Me, me,me!' I secretly think he said, 'yes', to get rid of me and my whingeing for a couple of weeks. JK, Wolfgang! But, for reals...kind of.

I started looking for cheap flights et al, until I stumbled across the Intrepid website. They had heavily discounted trips due to last minute vacancies. YES! The only downside for me was that I would have to meet up with some possibly strange, smelly strangers and drive in a car with them. I considered Turkey, because it has always been a dream destination for me, but it was arse-scorchingly hot. On a side note: I also dream of eating turkey. It's delicious. Then I saw a road trip across California, Nevada and Arizona. Cha-ching. I was sold. Within two days it was booked and then I got all worried and regretsy. After flipping back and forth from worried to over-excited I realised that this was possibly the last chance I may get to flit off somewhere on the spur of the moment. It also helped that I was starting the trip with a few days alone to explore San Francisco...OH YEAH. So, I wandered the streets of San Fran trying my best to not look like a tourist, taking covert photographs and strutting like I owned the place. I met several lovely locals, had beer with friendly weirdos and Irish coffees with Colgate models. I was living the dream. I found myself in Haight-Ashbury (I mean, I FOUND myself, man), op-shopping, avoiding crackheads, gazing whistfully at the trees and pretty houses. It was pretty spesh. I walked across the Golden Gate Bridge. After that, I called Wolfgang and informed him that we HAD to live there because it was SO ME. It was love. Just like the times I went to France, Spain, Italy etc. I said the same of the Grand Canyon, Joshua Tree, Death Valley, Williams Arizona and Yosemite. I did not, however, dig Las Vegas. I mean, the place is weird and smelly. And depressing. The only highlight was seeing Elton John play at Caesar's Palace. Oh, and a taco salad I ate and have since replicated at home, much to Wolfgang's dismay. JK Wolfgang! Hollywood sucked. But driving on the 504 between Santa Monica and Hollywood was like taking a cocktail of uppers and downers and trying to keep your eyeballs in their sockets. 

As for the Intrepid experience, I turned out to be the smelly, weird stranger and I even made some friends. Special mentions/Snaps go to: Melissa, a very attractive Yanky Doodle Dandy who drove us across three states safely; Jazzy J (my new partner in crime and the only human who makes yoga gear look good) and Christina, a deceptively shy and unassuming Swiss, who suddenly (and for one night only) breaks out the sequins and turns into a Sex BaBomb. Razzy Award goes to a couple from Australia, who shall remain nameless, for embarrassing everyone at every meal by arguing over tipping. But they were kind of cute, I guess, if you squinted. Ooh, I'm being mean.

I returned home with an extra suitcase packed to the brim with American chocolate, peanut butter and clothes galore. So Christmas shopping is mostly sorted for me. In your face, Santa! While I was away, and especially on my return, I realised that I can't be away from Wolfgang, the kids and my silly dogs for that long ever again. They missed me far too much. ANNNNND I missed them.

Now I am back in the real World seeking gainful employment and anticipating my appointment with Walshie next week to discuss my tingling legs and mouth. I'm expecting some tough treatment decisions coming up. Served cold. Wahh! I'll just go bang my singing bowl....oh, sweet relief.

Hey! I've just worked out a way to link this post to today's song! Now that I am broke, after my holiday and excessive Xmas shopping, I can only afford to go thrift shopping until I get a real job. There you go. I'm a frickin genius. I can't say much about the song and video except, that if you don't like it (Wolfgang, I am looking at you) then your brain, ears and sense of fun are broken.

PS. Mum, if you read this, I am mad at you. I dreamt we had an argument last night and you were MEAN. Let's just say that I won't be borrowing your hair curler any time soon. Call me! xo

Here you go. And, you're welcome:


Saturday, 22 September 2012

The Nips Are Getting Bigger

Sometimes I wonder
What all these chemicals
Are doin' to my brain
Doesn't worry me enough
To stop me from doin' it agai-ai-ain
Wipin' out brain cells
By the millions but I don't care
It doesn't worry me
Even though
I ain't got a lot to spare
- The Nips Are Getting Bigger, Mental As Anything - 

 Woah-oh-ohh. What another insane week I've had. I tell you, if I was well enough I'd be drinking and the nips'd be getting bigger! The morning after my last post I wound up in hospital setting the doctors all a-flutter with excitement and trepidation by presenting with a constellation of crazy symptoms. In my last post I spoke of a weird infection in my lymph nodes that developed a week after the last Rituximab infusion. Well, I called the hospital to let them know about it and to cancel my next infusion because I was unwell. They hit the big red panic button and told me to get my arse into hospital pronto. So, I did. I spent the next 3 days there getting poked and prodded and CUT! I had the neurologists, immunologists, dermatologists, rheumatologists and just about every other 'ologist' you could imagine working overtime to diagnose me. I even got interrogated by a nice fellow from infectious diseases. I was starting to think I had Ebola or something. It was really exciting¡¡¡

At first it was a delayed reaction to the Ritux. Then it wasn't. Then it was. Then it wasn't. Then, after taking 2 biopsies [read: hole-punched in the head and leg with a torture device then stitched up] of a rash I developed, it was a drug reaction. They took what felt like a litre of my blood, stuck things down my throat, poked my groin (not in the nice way) and made me feel like some mysterious creature from the Loch Ness or The Never Ending Story, except I would be the un-luck dragon. Or something. They didn't want to treat me, they just wanted to observe me and see if I would die, heal or just stay all messed up. The upshot of all of this drama is that now they are freaking out about my next infusion. I know I am freaking out about it! The problem is there aren't many options to choose from for disease modifying drugs. And I am so so so not going to take Tysabri.Tysabri has helped a lot of people but it has a higher fatality and complication rate and I am just like, NOOOOO. Even the doctors are reticent about it. My 'medical team' (I have a medical team! Go team!) are working with other hospitals and specialists to work out what to do next. Apparently I am a medical first for this type of reaction. I always knew I was unique, I just wish I could express that uniqueness differently. Anyhoozle. I have 3 different appointments at the hospital next week to discuss their plans. There is talk of doing some desensitizing techniques (probably more prodding) and they plan to admit me to hospital for a few days during and after my infusion. I don't know if they think it is reassuring to tell me this (they seemed quite enthusiastic about it) but they reckon if I have another reaction it will be swift and severe. PHEW, I'm glad to know this. BUT I WILL be in hospital and they WILL have a really good action plan for every possible outcome. Fricking hell. I'm sure it's patently obvious I am very underwhelmed by the reassurances. That's not to say I don't believe my doctors are very skilled; I am in the best hands in the absolute worst possible position to be in. It's a rock and a hard place. A catch 22. A quandry. A quagmire. Freddy's nightmare on Elm Street. It's what Multiple Sclerosis brings into my life almost every day: uncertainty.

So, when I am better, and when I get over this next hurdle and have the perspicacity with which to better articulate myself about this mess, I will update you. I'm not a big drinker but I might make an exception then...and drink a few nips of a delicious and belly-warming libation. Will you take a nip with me when I get through it?

This is from Count Down - a much loved show from my childhood.
Post script: Wilbur is back! It's a long story...

Sunday, 16 September 2012


Dont hold back...
 If you think about it too much, you may stumble, trip up, fall on your face...
Don't hold back...

You think its time you get up, crunch time, like a sit up, come on keep pace...

Don't hold back...

Put apprehension on the back burner, let it sit, dont even get it lit...

Don't hold back...

Get involved with the jam, don't be a prick, hot chick, be a dick....

Don't hold back...
 - Galvanize, The Chemical Brothers - 

The last couple of weeks have been utter madness! My Rituximab infusion did not got exactly as planned after I started to show signs of an allergic reaction about an hour into the treatment. My beautiful nana died a few days after that. My pet sheep, Wilbur has gone missing and I now have some bizarre infection in my lymph nodes. Seriously?! I nearly chose a song with a bit of a potty mouth title just to express my complete and utter frustration at the shit flying everywhere right now! I returned from my nana's funeral in Yeppoon yesterday feeling pretty unwell. I went to bed last night with a swollen neck and feeling hideous only to awake and find that Wilbur has gone AWOL. We have spent a large portion of the day driving around looking for him but we can't hear fim respond (as he usually does) so we are worried he is long gone. It sounds like I have trivialised the loss of my nana, GG, but I assure you it's just that I don't know where to start or how to reconcile the last couple of weeks.

GG was the closest grandma of mine and she was a brilliant woman. She was a talented artist of many mediums. She was warm and fuzzy and she had fantastic skin until the day she died. There are many platitudes I could trot out here, that people always say to make you feel better, about how she is no longer suffering and blah blah blah, but it is true and she will be greatly missed.

I am sitting in bed as I type having myself a little pity party and feeling  further from well than I would like. Wolfgang's lovely sister, who is incidentally a GP, checked me out today at a family brunch and said I have some kind of infection that is expressing itself in an unusual way due to the immunosuppressant. Have you ever asked someone for their professional time off the clock, on a Sunday, pro bono? It feels awkward and intrusive but she is so lovely and I really needed some medical advice pronto. So I have to get blood work done tomorrow and I have to delay the next Ritux infusion in 3 days AGAIN. After the reaction I had a couple of weeks ago I have been...umm...less than enthusiastic about this upcoming one. They can't administer treatment when I am unwell so it's off to the docs again to sort out this infection. BLAHHHHH. Ok, this is starting to read like an online diary. Are you bored? I'm not. I could bitch ALL night about this! So I don't alienate my few readers I will abridge the rest of this post. And they all lived happily ever after, The End. OMG. That just reminded me of this:

Anyway. So the question is: do I take the day off work tomorrow getting tests and then banging my latest, and by far, greatest investment, my Tibetan singing bowl? I think we all know the answer now. I realised I really do not manage my stress levels well and that's really not good for my health. I've had trouble with yoga and meditation lately so I got this amazeballs singing bowl and it totally steals my attention from everything when I use it. Internal and external chatter just stops so I'm 5 days in and I'm hooked. For me stress just causes this incessant chatter in my mind and I tend to overthink everything and every adversity just about breaks my back. So I'm banging that bowl A LOT and it works!

So. Galvanize. I heart the Chemical Brothers. Although this song is not my favourite it's got some interesting sounds. The Chemical Brothers just do this crazy thing where they build up and up and up and then it comes crashing down around you. That's what I love about them anyway. Like building a giant leggo tower and then knocking it down. I dig it. They have one song in particular (the title escapes me right now) but it's a perfect example of that analogy. Okay. Just listen to the song.

Good night GG and Wilbur, wherever you are.


Monday, 3 September 2012

Army of Me

"You're alright
There's nothing wrong
Self sufficience please!
And get to work"
- Army of Me, Bjork -

Oh hai! It's been a while since I've checked in, hasn't it? I have been a busy little bee of late, although I still feel rather slack for not updating sooner. My fundraising event was an absolute killer success - we raised over $3000 for MS Australia and the MSRA. With no small thanks to my amazing family and friends, I might add. The sausage sizzle was a sea of red, with most people wearing head-to-toe red, some even getting their hair sprayed red to get into the fun. It was really a hoot and we caught up with lots of friends we don't get to see very often.  A dozen or so local businesses got involved donating over $2000 worth of goods for the sausage sizzle and the huge raffle. In short it was a day of laughs and lots of warm fuzzy feelings. I'm not sure how my family feels about it but I haven't ruled out doing it again next year!

I returned to work after having about 6 months off only to be made redundant by the irrepressible Can-Do Campbell Newman (our new Premier). What a massive dickhead. There will be about 15,000 other Queenslanders in my position very soon unfortunately. Anyhoo, I'm over that but I have about 4 weeks until I will be unemployed for the first time since I was a teenager. Eeek! I admit I am a little freaked out but I am trying to remain positive about new prospects and the opportunity to get more creative. Besides, work isn't everything...and I am having more chemo in a couple of days so my focus is on that right now.

My most recent MRI resulted in the best health news I've had since my diagnosis. Two of the scary lesions have completely disappeared! The remaining lesions have diminished significantly in size and Walshie, my neuro, was stoked. I didn't even know he had teeth until that day when he smiled at the good news. I guess he probably doesn't get to deliver as much good news as he does bad. Anyway. I nearly jumped on him, I was so excited. Instead, I gave him some of my favourite chewing gum and some rude post-it notes. Ours is a complex and deep relationship, you see.

I also had my first meeting with my immunologist. We will call him The Hulk. Not because he is huge or green, or even angry. On the contrary, he was quite happy. His name just reminds me of The Hulk. But, I digress. We talked about the latest findings about Rituximab and whether or not we can continue to use it to treat me. After the next two infusions I will be apparently quite immuno-suppressed and therefore even more susceptible to opportunistic infections. I'm nervous about this and frustrated at the thought of having even more frequent checkups and bloodtests. I may have to go on a long term course of antibiotic prophylaxis to avoid a strain of pneumonia that has been a problem for long term Ritux patients too. But the options are few so I'm not feeling too sure about anything and I feel a bit powerless. It's a frustrating time. Having whinged about this I should also say that I am extremely lucky to have access to these life saving drugs. Without them I daresay I would be in a wheelchair or worse today. I just would love to know if anyone else out there has had a similar experience and has some words of wisdom for me.

Regardless of all this, I will be having the Ritux in 2 days and again in a fortnight. I like to imagine the different cells that comprise my immune system as little soldiers. The Rituximab kills half of my immune system and changes some functions of the other half, but somehow my body keeps working to stay alive and well. What an amazing thing that is. Sometimes it blows my mind completely. To me it's like trying to grasp the immensity of our universe - it's just so complex and mysterious that it's hard to fathom. Our bodies are incredibly adaptive and smart so I have to trust that mine will keep doing its best to maintain stasis. My little army of me will do its best I'm sure!

I'm feeling positive about the whole MS thing at the moment. It's been nearly 12 months since my minor relapse and 20 months since I was really sick. The longer I go without getting sick the more it feels possible that I won't. That is something I aspire to without any qualification.

On a completely unrelated matter, my gorgeous little family got me a PET SHEEP for my birthday! OMG! WTF?! We named him Wilbur. He is about 9 months old and is very cute, although he also looks really tasty. JK! I'm sure there will be a story or two to tell about him in the future. A sheep!  My menagerie is slowing coming together...hehehe.

My song for today's blog is Army of Me by Bjork. I've always loved this one and I think it's a salient choice. The clip is really fun too, I think. Blogger is being a shit and won't let me upload the video to this song so here is the link instead! Enjoy.

 Army of Me

Monday, 14 May 2012

Kiss off

"I take one, one, one 'cause you left me
And two, two, two for my family
And three, three, three for my heartache
And four, four, four for my headaches..."
Kiss Off by The Violent Femmes 

I am officially blowing my cover in the name of research! Well, fundraising for research... The month of May is MS awareness month and this year I joined the campaign to "Kiss Goodbye to MS". I am hosting a sausage sizzle "Kiss Off MS with Kirsty" on Sunday 20th May at Kenmore in Brisbane, where folks will be dared to wear RED (the campaign colour), buy a snag and make a donation to a great cause! All proceeds go to MS Australia and MS Research Australia. 

The details of the event can be found at this link:

My official fundraising page where you can make a donation (!) is at this link:

My goal is a modest $2000, but I need everyone's help to get there! 

Today's song speaks for itself, and it's an oldy but a goody. Please help me give MS the KISS OFF!

Love and air kisses, Kirsty xo