MS! The Musical

I don't know

2015-03-18T23:37:00.000+10:00

"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 household...to 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 me...it'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?

https://www.youtube.com/watch?v=PeKfwMGb8gc

Science Fiction

2013-04-30T11:39:00.003+10:00

"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.

Thrift Shop

2012-11-23T16:42:00.000+10:00

"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:

The Nips Are Getting Bigger

2012-09-22T14:37:00.002+10:00

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...

Galvanize

2012-09-16T20:15:00.000+10:00

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.

Army of Me

2012-09-03T11:46:00.001+10:00

"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

Kiss off

2012-05-14T15:08:00.001+10:00

"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:

http://www.kissgoodbyetoms.org/events/kiss-ms-kirsty

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

http://www.kissgoodbyetoms.org/community/individuals/kirsty-stewart

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

Protection

2012-04-23T11:22:00.000+10:00

I stand in front of you
I'll take the force of the blow

Protection

Protection by Massive Attack

I've been a bit slack with my blog posting of late so there is much to tell you. First, an update on my health...

MS-wise I have been really great. I have re-started the monthly testing of my B cells for the next round of Rituximab so I'm preparing myself for the mental and physical challenge of the impending chemo. Thankfully it's nowhere near as intensive as what a cancer patient would have to endure so I'm reminding myself of that when I start to freak out about it. The biggest thing I worry about is the odds of contracting PML (progressive multifocal leukoencephalopathy). PML is caused by the JC virus (which most people have) that is kept under control by the immune system. Immunosuppressive drugs like Rituximab prevent the immune system from controlling the virus and it can develop into something I would describe as MS on 'roids. Basically the myelin that protects nerves in your brain rapidly deteriorates and this can lead to severe brain damage and death. The odds are small but it's always in the back of my mind. Leading up to my infusions it becomes this irrational fear that I find hard to control. I try to focus on the fact I have access to this incredible drug, and that it's the only thing that arrested the aggressive onset of MS I went through. I just need to MAN-UP!

I have recently become aware that the lower part of both of my calves don't have 'normal' feeling. I love a good soak in a hot bath, but it's not a good idea to stay in for too long for those folks with MS. As we are getting into the cooler months (hallelujah!) a hot bath is becoming more enticing at the end of the day. In the olden-days (circa 2010) I could stay in a hot tub indefinitely as long as I had a good book and a glass of wine! The last couple of times, however, I have gotten intense tingling and discomfort in my lower legs and they seem to have a mind of their own until my body temperature drops. It's hard to describe but when I connect the dots I can see that this may be the reason I have found jogging such a challenge in the last couple of years. I saw my Neuro, Walshie a couple of weeks ago and he is convinced I had a relapse in October last year and that the lesions found in my spinal column were newbies. Bugger. Maybe this is linked to my crazy legs...maybe it's not. Ahh, the beautiful uncertainty that is MS. Needless to say, I have found these recent events to be somewhat distressing. My partner, Wolfgang, says I have a distinct pattern of going into major funks after seeing Walshie. Any weird twinges or tingles after seeing him sends me into a panic and I become the antithesis of happy-go-lucky-little-ray-of-sunshine. I was nearly over this funk until I had a bath last night. Boo. But if I am truly fair and reasonable, the fact is that my health hasn't been this good since well before my diagnosis. So I can't have long hot baths or run 10kms anymore. Meh. But I can run/walk 5 kms (when it's cool enough)! I've started losing all the 'sick' weight I gained and I've been learning a lot about nutrition and MS. I've also started planning a fundraising event for MS research in my local area next month. I looked in the mirror this morning and said, 'you are rocking the shit out of everything right now, don't be a bloody sook!' BAM. Happy KPow is back, baby!

My brilliant Chiropractor, Lisa, recently sent me the link to a TEDx talk about protecting the mitochondria in your brain and a lightbulb exploded in my fuddled little mind. Since then I have tripled my intake of fruit and vegies and I feel fantastic for it. For those with MS this video is a must. For everyone else this is a 'should'. You have to invest 17 minutes in it but the speaker's story is quite incredible and it all makes perfect sense, I think, so please share it with others. Dr Terry Wahls - Minding Your Mitochondria:

My choice of song today is not meant to be esoteric! When thinking about 'minding your mitochondria' this song just popped into my head immediately. We all need a bit of protection (from stuff life throws at you) from time to time. Not talking prophylactics, people! Although, that is important. Ahem. Massive Attack has always been a bit hit-and-miss for my taste, but they have a few tunes that I dig. This song is one of them:

I will post more fundraising details soon but until then here is a link to my page where you can donate as much or as little as you choose. Thanks for reading x

http://www.kissgoodbyetoms.org/community/individuals/kirsty-stewart

Hotel Yorba

2012-03-14T11:30:00.000+10:00

"I been thinking of a little place down by the lake

They got a dirty little road leading up to the house

I wonder how long it will take

Til we're alone

Sitting on the front porch of that home

Stomping our feet on the wooden boards

Never gonna worry about locking the door"
Hotel Yorba - The White Stripes

Anyone who knows me knows that I love The White Stripes whole-heartedly. We moved house a few weeks ago and this song comes into my head almost every time I step out the back door. We have gone from a small-ish 3 bedroom house in suburbia to a large 5 bedroom home on acreage...with trees, birds, kangaroos and a little creek! I am IN LOVE with this place and may never leave. This place inspires you to open all the windows and doors and sit outside under the trees. It's beautiful! We can play loud music whenever we choose and don't have to worry about pissing off the neighbours. In fact, our neighbours are pretty cool. The first thing they said when we moved in was, "use our pool whenever you want". They didn't need to tell me twice! So we like to imagine that their massive, deep, gorgeous pool is ours too. Life is pretty good right now.

The pins and needles in my hands cleared up as soon as I got a higher pillow, so that is a major win. I was starting to fret about that a bit. I have recently started the blood tests to check my B Cell levels for the next chemo round, which will hopefully not be for a few months yet. I had a couple of worrying days when my vision went a bit weird and not long after calling the hospital everything returned to normal. Murphy's Law. I'm fine with Murphy's Law as long as it works in my favour! Even though my chemo is one year down with 2 more to go, I admit I still struggle with the concept daily. It's a weird mix of feelings - grateful that I can access the treatment but sad and worried about the long term implications. I've rattled on about this before on my blog but it's one thing I have a hard time dealing with. I frequently ask my loved ones if I should do it for 3 years, or take the risk of stopping to conceive a baby. We always come to the same conclusion: just finish the chemo and worry about babies when I am well. Boring! But probably the safest option. It doesn't help that almost every woman I know seems to be pregnant, like, ALL the time. In the meantime I will continue to shower my step kids and niece and nephew with all the maternal love I have to share.

So... back to the song! Hotel Yorba reminds me of a really different time in my life, when I was younger, carefree and a total party fiend. I listened to a lot of White Stripes, The Hives, Jon Spencer Blues Explosion, BRMC, Magic Dirt, and had a brief love affair with the music of Bob Log III (my friends and I played starring roles in his Brisbane gig at the Zoo). I love the sheer rock'n'roll noise the White Stripes manage to produce, but I agree with most critics that Meg is not a great drummer, or singer. At the Big Day Out (maybe 2005?) Meg sang a couple of ditties and it was embarrassingly bad. But then there's Jack. He can do no wrong in my eyes. Together they make it work. Hotel Yorba reminds me of the grass roots and blues I grew up listening to and makes me want to slap my thigh and stomp my feet. I dig it...

Until next time...see you round like a record!

Needles and Pins

2012-01-25T17:19:00.004+10:00

"But still they begin
Needles and pins
Because of all my pride
The tears I gotta hide..."

by The Searchers

This song is so very appropriate (well the title anyway) at the moment. I am very familiar with the old needles and pins and I get them randomly and often enough for it to be pretty annoying. The MS variety of the pins and needles is not quite the same (for me anyway) as when you sit awkwardly for too long: your leg goes to sleep and your first step makes you yelp. It's a strange sensation and it's very intense sometimes. During the onset of MS I experienced the ol' P&Ns (or N&Ps, whichever you fancy) pretty much everywhere and it was always the precursor to worsening symptoms. For some time now, however, I have been woken many times during the night with intense P&N in my hands. It used to happen sporadically but it is happening every night lately and it's waking me up every couple of hours. It's a frigging pain in the arse! I need sleep, people! Argggh F&*$##*)@

***Intermission for technical repairs ***

Sorry about that, folks. Must remember to count to 10. Where was I? Oh yeah. So it's really easy to blame every twitch I ever have on MS but I know that there is always the chance it's something else. My neck is a bit of a mess after several whiplash injuries in my teens so I asked my Chiropractor about it today. Of course, nothing is that simple or black and white, and he agrees it's hard to know for sure what is causing it. So we discussed my pillow height and sleeping positions and he adjusted my spine. I always feel brighter after an adjustment, like a dusty lightbulb that's been wiped clean. BING! A friend of mine, who also sees my chiro, agrees that as well as being a great chiro, he is very easy on the eyes (Sassy Buttlick, I am looking at you). In fact she always jokes about how he touched her bum or hugged her during her adjustment and giggles like a teenager. It's pretty funny. But, I digress. The long and short of it is that I may never know what the cause is.

MS has given me a great deal of paranoia and uncertainty when it comes to my health and my future. It's not good or bad, it just is. So I'll just take it as it comes and "get down on my knees and pray that they'd go away" and probably try the pillow thing too as I'm not into god and stuff. You get the idea. Anyway...I am starting to annoy myself so you are probably OVER IT. Poor thing.

THE SONG...

The likes of Joan Jett and The Ramones (both of whom I love) have attempted covers of this song but they are appallingly bad. Do yourself a favour and have a listen to the original, it's a cracker:

The times, they are a-changin'

2012-01-08T18:16:00.001+10:00

"Come gather 'round people, Wherever you roam, And admit that the waters, Around you have grown, And accept it that soon, You'll be drenched to the bone. If your time to you, Is worth savin', Then you better start swimmin', Or you'll sink like a stone, For the times they are a-changin'" Bob Dylan

So if you have been following my blog you will notice a lot of changes. I've been thinking of a better way to express myself through this blog and last night, around a scrumptious Thai meal with my loved ones, we brainstormed a makeover for my blog site. It's hard to tell my stories without sounding a bit depressing. Let's face it, MS is bloody depressing - but there is so much good to tell too! We agreed that my blog name should be changed to something a bit more irreverent and more creative: MS! The Musical was born. From this point on, all of my posts will be based on a relevant song that helps my readers better understand my message and provide them with some more context. I also get to revisit some of my favourite tracks in the process!

This week, being the anniversary of two major life-changing events I immediately thought of this Bob Dylan classic. You see, this week is one year since I was formally diagnosed with MS, and that same week my brand-new family home was inundated with flood waters in Brisbane. My life was literally and metaphorically being drowned by tragic events. But I had a choice: sink, or swim. Together, my family and I swam out, dried ourselves off and started rebuilding a new life, in more ways than one. Sounds pretty epic, huh? Well it was!

Today I am happy to report that despite feeling a twinge of melancholy and sentimentality over the year's events, my life has never been better. I have my health (relatively speaking) and the love of a wonderful man. I have four beautiful step kids and amazing family and friends. MS is a new house guest, and the times are a-changing for us, but the outlook is sunny today!

27 degrees

2011-12-12T14:04:00.002+10:00

I live in Queensland, Australia so I am no stranger to oppressively hot summers. I've never really enjoyed summer here, with the only redeeming features being swimming, cold beer and mountains of yummy stone fruit - things that are synonymous with a Queensland summer (for me, anyway). I've always thought I was born in the wrong hemisphere (and always thought I should be French). Summer has just arrived and temperatures are regularly hitting the low 30s (celsius) already. Being new to the whole MS thing I am now dreading summer more than ever, because it looks like we are in for a steamer this year.

Last summer was a whirlwind for me as I was in and out of hospital and managed to stay in airconditioning for the most part. I did discover, however, that my heat limit is somewhere around 27 degrees. Beyond that temperature I notice MS symptoms popping in to say 'hello' like an old, unwelcome visitor. My legs and hands tingle and my voice box goes haywire making me sound like I've smoked Winnie Reds since the age of two. Sounds sexy, I know. So I have developed a few tools to help me cope when things get too hot to handle. I've always maintained a collection of handheld Chinese fans (our Chinatown sells a lovely, cheap if yet sometimes unattractive selection), so I always have one in my handbag. They are actually great. I also take a canteen of water everywhere I go. You might be surprised to learn how quickly you can cool down when you pour a bottle of water over your head and feet. When in public you might attract fearful looks from passers-by who fear you are a lunatic, pouring water all over your Sunday best and fancy shoes, but at least you'll be cool. (it's even more effective when you yell 'OH YEAH!' while you do it). I keep a light coloured umbrella/parasol in my home, car and office for really hot, sunny days and I also keep ice packs and a Koolyband for my neck handy. It's kind of annoying but I now try to plan my days ahead, if I can, to ensure I can be in airconditioning wherever possible.

You might ask, 'But what about picnics, cricket, croquet and foxy-boxing, lady?' WELL. I am pleased to inform you that these activities can be modified for the heat-handicapped! You can have a picnic virtually anywhere. That's right. Dining room table, kitchen floor, couch, bath tub, on your boyfriend's head. Cricket and croquet? Well, there are plenty of hallways at work and at home, so when the urge arises I already have my green set to go. Scrunched up paper also performs well as a ball substitute. As for foxy-boxing...you will have to buy my book for that.

But seriously. Heat can be terrible for people with MS. I know of one lady who completely loses her vision when she overheats. That just sucks. Thankfully I'm not that bad and once I cool down the symptoms slowly disappear. I have to tell you though, my social life suffers a bit. My once cherished pastime of running is now a distant memory (though I will continue trying at the airconditioned gym). Alfresco lunches and BBQs are also out on hot days. I now console myself with the thought of being a modern day mermaid: living in a pool, having an effortless tan and beautiful green hair from the chlorine (I am a bottle-enhanced blonde) and being hand-fed grapes by servants. OK, I can't stay serious here, and I may be complaining but what's a former super-fit social butterfly to do? If I don't laugh about it I'll cry!

I'm not entirely sure where I'm going with this post today (might be the beer) but I know I should feel lucky that I am enjoying airconditioned comfort as I type this rant. I am staying in a beautiful beach house this week (lucky) with the clan (lucky) and the temperature is currently somewhere around 30 degrees (boo). It's just a few degrees too hot to stay out for long so I will be a shut-in until it cools. Now, where's the beer...?

And now for something completely different...

2011-10-27T10:16:00.000+10:00

What a week! It turns out there was some confusion with my latest MRI report. My thalamus seems stable but the old lesion is still active. The new lesion is actually in my spinal column, which is...interesting. I am yet to have the results explained to me, but the doctor's priority seems to be getting the drugs into me, so I shan't complain. On Monday this week the hospital called and said I was to be admitted on Wednesday for more chemo. Thank god my boss is super cool with last minute notice (she's a bloody gem actually), despite my hectic work schedule. I had to postpone a really important trip to North QLD for this treatment and she just shrugged, bless her cotton socks! I was infused yesterday and today I am home resting and drinking endless cups of tea. I had a very bad feeling about this infusion for some reason and was compelled to tell everyone how much I love them constantly. MS is such an emotional and physical rollercoaster and I think my usual optimism has given way to reluctant skepticism. But enough whingeing! The infusion went really well and thanks to the generous dose of phenergan (pre-treatment) I was unconscious for most of it. My lovely mum sat by my side the whole day and it was a great comfort. Just in time for the needle to come out, my partner and his four cherubs came to pick me up. Having the kids around makes me play tough so it was really good to have them with us last night - and they all give great cuddles. Their nan came over for dinner and we had an early night. My heart pounded really hard in my chest all night but apart from that I felt surprisingly good.

I am a bit drained and weak today but I have some time off work to recover so I plan to use it to full advantage. Yoga, reading and sleeping is on the cards for today, and a visit from my fabulous sister (who will no doubt bring goodies and cheer). MS symptom-wise I am doing well. I can't ask for more really! More chemo in two weeks and then it should be check-mate for MS. Hazaar!

Did I mention that chemo makes you chemically 'hot' for a week? I can officially confirm that I AM HOT baby! Only downside is no smooches for seven whole days!

Thank you to all my friends and family for the huge love and support you have given me. I love yooooooos.

Number 6

2011-10-20T14:54:00.000+10:00

My neuro's registrar called me yesterday with some less than good news. I have a new lesion in my thalamus. I have been hesitant to post this today, since I am in a bit of shock, but this is part of the 'journey' (for want of a better word) I'm on. So I'm sharing the good, the bad and the ugly. I am unsure if I am feeling unwell today due to the MS, or if I am just shell-shocked. Maybe a bit of both. I feel like a puffy lump of lead. I feel like MS is trying to kill me, and I worry that it will win. I am worried about what is happening to my thalamus as I type this. It's a pretty critical part of one's brain and I really need it to work, damn it. I am terrified, in a word. I am considering writing a living will, just in case things get nasty again. We are hoping approval for the chemo comes through next week so we can get on top of it before any damage occurs. I fainted and vomited at a cafe near my office two days ago (was pretty embarrassing!). I brushed it off as low blood pressure or low sugar, but now I worry that it was my brain. Worry, worry, worry. I am looking for some positives but admit I am feeling defeated today.

If you are needing some inspiration today, all I can say is: be grateful for what you have now, because I am.

But wait, there's more!

2011-10-15T13:17:00.000+10:00

So much has happened since my last blog...where do I start? Welllll...

I have met with my local MS coordinator, MS nurse, MS psychologist and most recently the MS physio. I have learned so much more about MS, and I thought I had it pretty much covered. WRONG! I won't go into the boring details of my fearful reality checks but suffice to say I am now looking at my old, unwelcome visitor, MS with different eyes. It now seems more and more likely that I have had MS for much longer than these past 11 months. Looking back over the years I realise there were signs of something going on for more than 10 years. The MS nurse noted my history of illnesses and immune related issues, like asthma, endometriosis and stomach and bowel problems and gave me a knowing look that said "this is a classic story for many folks with MS." That, strangely, cheers me up and makes me feel less and less like I was hit by a steam train this year. He also gave us a lesson in MS treatments, particularly the different types of chemotherapies. I am one of a lucky few in Queensland, and possibly even Australia, that has access to these drugs because my Neuro is not very conservative. He doesn't label himself an MS specialist, but it seems that he is certainly viewed as one by his peers. And he's MINE! I will just have to tell him he is never allowed to retire or move interstate...

A couple of weeks ago I had a much deserved (and long awaited)  holiday with my lover to Koh Samui, Thailand. Those of you with MS might be thinking I'm mad for going to a notoriously hot and muggy destination, but we actually managed it spectacularly well. And besides, there is no way I will let MS get in the way of anything I want to do! We zoomed around the little island on a scooter together, shopped, ate amazing food and sampled strange local delicacies, slept, read, drank, swam and got all smoochy and romantic. It was fantastic. It was just for one week but it was the best week I have had in a long time. It got pretty hot some days but for the most part we had mild mornings and afternoons. When it got too hot for me when we were out of our air conditioned resort room I would just jump into the ocean fully clothed or in my swimsuit and jump back on the scooter. Other times in the shopping district in Chaweng I would tip a bottle of water over my head and feet and keep wandering. We cuddled tigers, leopards, monkeys and elephants and swam in beautiful waterfalls. It was a dream tropical holiday.

The following week back at work (eww), however, I started to get some crazy, new symptoms. I developed some pretty hardcore neuralgic pain in both of my legs.WTF! I tried to remain positive but it's hard to stay calm when you have seering pain that no drug like a good old nurofen or mersyndol can stop. It kept me up for two nights and I couldn't go to work. So it was off to the GP for a chat. She called my Neuro and they concurred that it was a relapse or flair-up and therefore time to visit the hospital clinic. So, naturally, I panicked. My lovely man was travelling for work when the flair up started and my beautiful mum came to my rescue and stayed with me until my Neuro appointment.  I had to take a big dose of valium to sleep and dragged myself to the PA hospital the next day. Through all of this though, I was thankful that I remained able-bodied and still had good vision. There HAS to be a positive when things are going sour, right? My Neuro was super cranky and sick with the flu so THAT was awesome (but I still love him!). After he made about 10 cranky phone calls and yelled at a few people he told me that I needed more Rituximab (chemo) and another MRI. I'm still waiting for the chemo dates but thankfully the pain has subsided and I just have a wonky/sore left leg occasionally now. I can totally deal with that. Walshie (formerly Micky, his nickname has evolved so stay with me here, folks!) theorised that my flair-up might just be due to getting too hot too often in Thailand, but he didn't want to take a risk.

Then today I had another MRI. I'm no radiologist but I reckon the pictures look pretty good so I am staying positive. I couldn't see 5 big lesions like last time and could only spot one obvious white spot. I don't get the results until my next trip to hospital, so I'm playing the waiting game again, but at least I don't have to stay in hospital and eat that heinous food! Hooray for small victories!

The other big event for me this week was my first meeting of other folks with MS. I have been equally terrified and curious to meet someone else with MS ever since the diagnosis but I was worried they would all be sad and crippled lonely people. Of course when trying to raise funds, the MS Society of Australia will use the most disturbing images and stories and that can be hard to reconcile in your mind when you have the disease. But the comforting reality is that is only a small percentage of people with MS and most folks live pretty normal lives with the occasional interruption. So I rocked up to my first yoga class at the MS Society headquarters to find 8 other women there, ranging between my age (33) and about 60. And they could all walk and talk. Thank god. More than 50% of us had been diagnosed this year, and a couple of them had lived with MS for about 15 years. I was like a steel vice and could not talk for fear of bawling but after the yoga class we sat around and had a talk. Everyone wanted to share their stories and ask each other questions. One women admitted that she only came to see what we looked like, and if we could walk! So now the big mystery of 'others with MS' has been misspelled for me I can tick that off my list of things to do. Now I'm gearing myself up for chemo and MRI results. Please wish me luck!

Stay well x

Finally, some good news! A round of applause for modern medicine!

2011-07-12T08:55:00.065+10:00

So it's been a while since my last blog. I had actually written a page a month or so ago but stupidly forgot to hit 'save' and all that appeared on my blog for viewers was a heading...and no post. Such a 'tard. Anyway. There is still great news though!

My last appointment with my neuro revealed that the chemo from February was still working like a charm. The CD19 cells the Rituximab is designed to kill were still at undetectable levels and that means I don't need an infusion yet! I've been having monthly blood tests to check the cell levels and the rule is that if I don't hear from Micky (my neuro) then it's still good news. I've had 3 tests so far and no phone call. I have one more test in a couple of weeks and then go back to see Micky in October. I am planning a week off work in between all of this, very soon, and my only wish is that things will stay quiet until after that! I really need a holiday and some pampering.

I consider myself extremely lucky even though, admittedly, I will need to have more chemo eventually. But any break, no matter how small, feels like a little miracle to me at the moment. The only caveat Micky gave me was that if I do have a relapse now he won't be able to do much. SO I have decided there are to be no more relapses ever, thank you very much. I have a pretty intensive vitamin and health care regime that I'm sure can also be attributed to my current wellbeing. Every day I take 3-4 grams of fish oil, Vit B multi, Vit C, calcium, zinc and Vitamin D. I take the occassional inner health plus tablet and some slippery elm. I sit in the morning or afternoon sun for about 15 minutes every day without sunscreen. I exercise fairly regularly - runs and walks. I see my Chiropractor fortnightly and my GP monthly. I get fortnightly massages and see my psychologist regularly to keep my panic in check. I drink a glass of red grape juice most nights (the alcoholic variety), soak in the bath with a book once a week, and try to get at least 9 hours sleep every night.

This is a lifestyle I've always tried to maintain over the years, and managed it very inconsistently, but now I feel like there is no option to slack off. Ever. And there are certain things that I just cannot skip - like my fish oil and sunlight. I freak out if I forget my daily dose and worry that something bad will happen. That's a bit of crazy talk really, but I know how important these things are to managing MS and keeping it at bay. If anyone out there has any experience with this or any advice about things I could add to my regime I would really love to hear it - and maybe swap notes. I am still yet to meet another soul with MS so I feel a bit isolated. That will hopefully change soon as the MS society are sending a local coordinator to visit me soon. I think the idea is that they will offer me services that might help me cope and possibly introduce me to some other people in my area that have the same bullshit disease. I'll let you know!

Until next time...stay well!

And the winner is...more chemo!

2011-06-16T21:53:00.002+10:00

Soooo. Yesterday I saw my neurologist. He is a busy man who practically runs between patient beds and clinical rooms and doesn't seem to stop. He is an oddly attractive character who wears tight shirts and has a curiously groomed moe. This is, of course, irrelevant but it helps set the scene. I suspect he also moonlights as a comedian as he possesses brilliant comic timing and loves to take the piss out of me whenever the opportunity presents itself. My partner, Wolfgang, and I agree that he is very likeable, especially when he has good news.
So. The BIZ. After the initial how-do-you-dos we got right down to it. Short story long: he feels I should do Rituximab for the next three years. I must admit I was shocked - I didn't realise we were looking at that length of time for treatment. I get it though. I had a very aggressive onset. He said he wants to see the MS totally quiescent for a reasonable period of time and I'm fine with that. I am just not ready to accept three years of chemo so I asked if we can take it six months at a time and he seemed amenable to that - especially since I am in my 'child-bearing' years. I find it hard to keep a straight face when confronted with that phrase. Regardless of the fact that it is...well, true. We discussed my general well-being, which is poor, and he attributed my propensity for illness to the chemo. It's an immuno-suppressant so what can you expect?

While Dr 'Micky' (I just decided on this nickname) was scrolling through my records he briefly brought up a profile MRI picture of a head and brain on his PC screen. I asked him excitedly if it was my brain and he looked at me seriously and flatly said, 'No. You don't have one.' HILARIOUS.

Re-enactment only. Really.

He agreed to walk us through my series of MRIs since I have never seen the pictures. Again, I got a shock. He pointed to several large white patches on different brain images. They were my very own multiple scleroses. Aww! I thought they would be little, tiny patches that had wreaked massive havoc on my body. In fact, the patches were big. Some seemed to be in the order of 1-2 cms in size. Not mms - cms. I decided that instead of spurting expletives, as is my want, that I would try to have a sense of humour about it. 'No wonder I felt so bad," followed by a lame chuckle. Ok - so maybe I said 'shit' instead of 'bad', but this is a massive improvement for me. There has been so much crap news this year that I must admit my language has regressed to that of a 13 year old boy experimenting with the feel of new swear-words on his tongue. Colourful, in a word. So what, though? I'm all grown up. NB: if you are a future employer, I don't swear at work. Much. And I am REALLY SMART.

So that's the end of that chapter for now. I can go back to having an appetite and not feeling crazy-nervous. I go back in a fortnight to see Micky to discuss blood test results and book in for two infusions of Rituximab, the wonder drug. I really need to gear myself up for it. The build up is full on and the infusion process is especially daunting. I am excited to see a new MRI of my brain though. MRIs have so far not resulted in good news for me so I'm hoping they show a diminishment of the lesions. I'm feeling quietly optimistic and I have a good feeling about it! Wish me luck!

P.S. Eyeballs look COOL in MRIs - you should google it!

The importance of being Yoshi

2011-06-13T18:16:00.000+10:00

This is my dog, Yoshi. Yoshi is an 18 month old West Highland White Terrier. I've had the luck of knowing Yoshi since she was about 6 weeks old. She's only been in my life for this short short time, but she has had a profound impact on me. Poor little Yosh has been very sick recently with complications from knee surgery.

She's an awesome little dog so I thought today I'd dedicate a blog post to the importance of being Yoshi.

Yoshi as a puppy

Yoshi came into my life at a very unhappy and stressful time. She made my days so much brighter and gave me a reason to come home from work every day. She gives the best greeting of any dog I've ever met! She also gave me total and unconditional love and companionship at home - I was seriously lacking that.
She's an incredibly affectionate, obedient and funny little thing.

After her recent knee operation :(

She's been my constant companion through an unhappy marriage, a divorce, 4 house moves, many illnesses (including the MS), the floods that claimed our 'new' home, job changes, a new relationship and much more.

When I was sick in hospital I was pining for Yoshi terribly. It was kind of embarassing actually - I think everyone thought I was losing the plot because I couldn't stop worrying about her! But we'd just lost our house and she was being shunted around the place and I wasn't around, so I know she was pining for me too.

Until I met Yosh I wasn't a crazy dog lady, but I fell in love with her and she quickly became a really important member of my family. Now I would describe myself as a Yoshi enthusiast and a huge dog lover! I'm really mozzing for Yoshi to have a speedy recovery so she can return to her maniacally energetic ways soon.

To Ritux or not to Ritux? That is the question.

2011-06-04T20:59:00.001+10:00

Today I started a couple of lists. In just over a week I see my Neurologist to decide the next step in the management of MS. The first list is comprised of about a trillion questions - and I know he won't have answers for all of them. For example: a) why am I sick ALL the time - is it the Ritux? b) are there any surprise lesions? c) can I try interferons? etcetera.Very soon I'll reach the six month mark since my last Rituximab infusion. I am pretty nervous about what the doctor will suggest and am scared in equal parts about taking the Ritux and not taking it. Nuts right?! It's like being stuck between a rock and a hard place. If I take it then it's more immuno-suppression and how long can you do that for without complications (don't answer that!)? And if I don't take it then I'm at risk of a relapse. It's a quandary.

I'm acutely aware of my biological clock and knowing that we can't even think about conceiving until 12 months after my last Ritux infusion keeps me awake some nights. (I'm nearly 33 and am also blessed with endometriosis.) My partner has four beautiful kids and even though we only have them part-time they have given my life a whole new dimension that I just love. They are awesome children - they test me and more than reward me and I miss them when they aren't around. Experiencing milestones with them is pretty exciting too - tonight the littlest one lost her first tooth and I am so proud! In preparation for the tooth-loss (so wiggly but not quite there) we made pizzas and had a pizza picnic on the kitchen floor with red lemonade (a rare treat but it's a special occasion!). They really bring out the kid in me. But, I digress...I do wonder, if we had a baby, if the kids would feel threatened. But I know there is more than enough love to go around in our home, and we have dealt with trickier things in our relatively short relationship. I know my health should be my first concern, but it really is hard to ignore this desire to have a baby. Especially since I know I am with the right man (who, incidentally, is also awesome). I suspect also that the cave-woman in me really wants to leave a biological legacy - one that merely donating organs when I'm plant fertiliser does not satisfy. You know, the whole blood-line thing. Yeah. Meh. I'm getting bored, and I'm sure you are, so I'll move onto list number two. Oh, a side note: I'm starting to think red lemonade was a bad idea tonight...the kids are so hyper right now and it's past their bedtime.
Let's see. The second list is kind of a work in progress. It's a combination of affirmations and 'big' to dos. Stuff that I feel I need to tell myself and do to feel good about life and where I'm at. Without totally embarassing myself I will share a few items with you. After all, that's why I started this blog.

Affirmations:
1. I am healthy and strong
2. I have MS, it doesn't have me - I'm in control
3. I am beautiful (yes, I have to tell myself this. you should try it.)
4. I deserve happiness

'Big' to dos
1. Join the Alliance de Francaise and finish the full language course
2. Run the Bridge to Brisbane
3. Go to the north pole on that giant ice-breaking ship and see polar bears and other cool stuff (I'm shit-scared of the ocean and boats so this is a scary one!)
4. Ski in the snow

There is more...but I won't bore you with the detail. Or, more like, I won't tell you because you'll think I'm totally coo-coo-cachoo. They're all legal though... So much to do, so little time.

Breaking Bad(ness)

2011-06-02T10:13:00.001+10:00

Ok. My first blog was pretty full-on, wasn't it? It's hard to be up-beat about my MS diagnosis, but it's not all bad. I guess. It's hard, but not impossible. There have certainly been good things to come out of my experiences with MS. I guess you could say 'by-products" of MS. I don't take things for granted anymore. Ok, ok...so I still take refrigerated goods for granted, but the big stuff? No way. My family, my partner, my friends, my ability to make a living, my ability to see and walk. These are but a few things I give thanks for every single day. I'm not religious in any sense but I know now more than ever that I am lucky to have what I have and know what I know. That's not to say I didn't appreciate what I had before my diagnosis. But with the gift of perspective now I know that I shouldn't delay that phone call to my mum, or skip lunch with a friend to finish this work report that can wait. And I no longer slave after hours at work when I am feeling too tired to go on - my health is more important than that. If I want to sleep in, I sleep in!

It seems silly to me that this is stuff we should already know, yet for the last couple of years this is what I did routinely. I was avoiding personal issues by burying myself in work and thought that promotion and recognition at work was all I needed to feel fulfilled. What a joke! In the 12 months leading up to my diagnosis my health went really downhill. I caught every bug in the air, was exhausted all the time, I stopped running regularly and packed on the weight. And the one thing that made me feel worthwhile (work) became so unappealing to me that most days I struggled to get out of bed (it didn't help that my boss at the time was a complete nutter!). I felt I had nothing to give anyone. I got weird infections and had to have emergency surgery to remove a painful abcess. Things were just utterly shit. My wonderful network of friends and family, my beautiful man and even my precious little dog couldn't help me out of this funk. Then to cap off an already rough year, the floods and MS came along. Woahhh! My head was exploding. WTF?!

The interesting thing I learned about myself after all of this is that I am remarkably resilient. I doubt that I would be in this frame of mind without the incredible support afforded to me, but I do know my threshold for badness is much higher than I thought possible. I always thought I was a bit of a soft-touch, or a wuss. I am actually a tough, strong and smart (if not slow to learn!) woman.

When the doctor told me to 'live my life' and 'enjoy every moment and stop to smell the roses' I could have head-butted him for being so cliched and condescending. I thought 'How the hell would you know?! Don't say stuff like that because it's bullshit.' I didn't want to hear it because it was scary and I knew it was true. It's hard to hear it from people you (rightly or wrongly) assume have a perfect life. But, as cliched as it sounds, I think it should be everyone's credo.

For me, life is now a double-edged blade. While there is beauty and wonder, there is badness and ugliness. But I have realised that without the badness and ugliness you have no idea just how much beauty and wonder there is on your life. If I sound like some crazy zen hippy then too bad. Because for me it is true. While I wish like hell I didn't have MS, I am grateful for the lessons it has taught me. I am, in fact, one lucky lady.

The story of 5 little scleroses

2011-05-24T10:31:00.003+10:00

In the week leading up to Christmas in 2010 my vision went haywire. My partner and I had just moved into a new house together for the first time and we had only been there for a week! Doctors thought it was a virus as I had extreme vertigo so my symptoms were shrugged off. After about five days of worsening vision and major fatigue my partner and I decided I needed to go to hospital. After 24 hours, several specialist consultations, two MRIs and four attempts at a lumbar puncture I was diagnosed with onset of MS. At this point I only had one sclerosis (in my brain stem) so technically it was an isolated demylination event. I was kept in hospital for three days and treated with some hardcore steroids and sent home on Christmas eve to recover. The steroids made me quite sick. I had a temporary and partial recovery for a few days before the return of double and blurred vision and fatigue. I insisted that it would get better, despite my worsening symptoms.

The following week I was at my parents place in the mountains attempting to celebrate a belated Christmas with my family, my partner and his four children. I knew it was getting serious on the night of our Christmas dinner. I was too fatigued to stand, or even maintain a conversation. That night in bed I noticed my right arm was tingling and going numb. At this point I hadn't realised just how bad MS attacks could get, but I was scared and in denial nonetheless. As luck would have it, the very next day my house in Brisbane flooded completely. While the heroic men in my life salvaged most of my posessions, I was preparing to return to hospital for another MRI. I was starting to think I had some serious karmic issues from a previous life. Why the hell were these totally shitty things happening?! That night my symptoms took a pretty severe turn. I lost feeling in my right arm, and right side of my head and torso. My balance centre went - I couldn't move my head without vomiting, I couldn't walk, let alone sit, and my swallow reflex was failing. I couldn't cough or talk properly. To add insult to injury my hormones decided it was also time for my period! GREAT. The next MRI revealed two more scleroses. The doctors confirmed it was Multiple Sclerosis. I was pretty out of it for a few days and I felt like I could die - and I would have been ok with it. The doctors this time were a bit baffled. The steriods should have worked and yet I had new lesions in my brain. For the next week I was put on daily infusions of immunoglobulins - a human antibody treatment. It worked a treat...for a short while. By this time though, my vision had nearly fully recovered and I was independant enough to send home. That in itself was a triumph. But then I remembered I was homeless!

My partner and I stayed with his lovely elderly mother while we regrouped and assessed our situation. We took a couple of days to enjoy time with the kids and friends and to distract us from all that we had been through. Then it worsened again. I was really panicked to realise that the tingling had spread to all of my limbs. So, it was back to hospital. By the time I was admitted to a bed I was, again, in a bad way. I couldn't walk unassisted. My legs and arms had lost feeling and my face and mouth were numb. I thought it was never going to end. The doctors were starting to suspect lymphoma was the culprit since it looked like MS on scans, but it was not behaving like typical MS. They convinced me they needed another lumbar puncture to rule lymphoma out. Now THAT was the last straw for me! I remember saying something to the effect of, "fuck off!" incredulously at the doctor, quickly followed by an apology for my lapse in manners, then seriously: "no fucking way!" Every time I needed a needle now, for whatever reason, I freaked out - and needles never used to bother me. I had scars all over my hands and arms from dozens of canulas (and my veins had all collapsed) and I just did not want any more freaking needles. They insisted it was necessary so I sucked it up for another spinal tap - although I insisted on strong sedation first. It's funny that, even at times like this, you can find something to laugh about - namely, my drugged out remarks to the nurses and my family throughout the procedure. My poor family and partner were just exhausted and beside themselves. It certainly wasn't just me going through this. Yet another MRI found two more nasty scleroses. It was not lymphoma - but a very aggressive onset of MS. We were devastated.

Pincushion: words of encouragement from my love

The doctors had exhausted the early phases of treatment and decided to bypass the 'intermediate' or management treatments, like interferons, and go for the big guns. They wanted to start a drug called Rituximab - a type of chemotherapy used in luekaemia. In a short period of time I swung from "absolutely not" to "give it to me now". It was a hard decision to make and stand by, though. The doctors had to appeal to the medical board to give me the extremely expensive treatment after they denied it on the first application ($10k per infusion and I needed two!). It finally came though. The infusions were administered over a fortnight. It went well - the only side effects were hardened and hot veins and it took a couple of months for that to disappear completely. Most importantly, it arrested the MS attack. I was, and still am, so grateful for that.

This all happened in the space of eight long weeks - it was the most intense and stressful period I have ever endured. I was not able to work for three months and got pretty bored lying around in bed all day, every day. It has now been four months since my last infusion. I've had time to process my experiences, find a new home and return to work full time. Life is returning to some form of normalcy but I know it's just the beginning of my new life.

Is this thing on?

2011-05-22T20:19:00.000+10:00

Be gentle...this is my first time in Blog Land.