Hotel Yorba

"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

"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'

"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

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...

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

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!

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