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


  1. Your rescue squad will never be too exhausted. Yay for the little army inside you, I love it big time.
    Nice post (finally) and thanks for making me cry.

  2. Just spent quite a while reading your blog Kristy. You are certainly an inspiration. I have posted anonymously because although I knew you when you were a little girl you would never ever remember me. I always remember how incredibly beautiful you were. Long blonde hair, a cheeky smile and a child with energy. I see that energy continues even when faced with MS.
    I am sending you much love, courage and prayers.

  3. Kudos Kirsty. As always I am in awe of your spirit, strength of character and brilliance. You never ever,ever back down.
    I am forever grateful for the lessons that my children teach me. You are my teachers. <3

  4. Kudos Kirsty. As always I am in awe of your spirit, strength of character and brilliance. You never ever,ever back down.
    I am forever grateful for the lessons that my children teach me. You are my teachers. <3