Wednesday, June 16, 2010

Mind over Matter

It seems like such a simple concept.

Leaves on a stream.

It’s the basis of this technique in relaxation that's been suggested for people like me who can’t seem to shut down their thoughts long enough to get some decent shut-eye.

‘Mindfulness’ it’s called.

What you have to be mindful of, is that you don’t let your mind run away with you, and by imagining leaves gently floating down a stream, you’re on track for some quality meditation. When you get that going, you imagine that each leaf is carrying an unwanted or unnecessary thought, which you pop on the little bits of foliage and let them just drift away. Out of sight, out of mind, and all that.

Now, the problem I have- and have always had- is that I overthink things. So what seems a simple application of imagination becomes a full-scale exercise in geography, botany, and logistics.

Here’s the thing…

I start out well enough: there’s the stream, here come the leaves, and here I am standing by to plop my errant thoughts on board.

But then I start wondering where I am to have such a verdant setting – it’s obviously not the drought-stricken paddocks I’m used to seeing here in Australia, as the area is lovely and lush and the water is running clean and fresh at a cracking pace. If I can get beyond my initial mind meanderings, I start to wonder what sort of leaves they are. What kind of trees or plants are nearby that are dropping their vegetation at a constant rate? And simply because I have that creative streak in me, I conjure up many different species of shrubbery, just for variety, which only brings me back to the original musings of where the heck I am to have such diversity?!

Can you see my problem?

OK, so if (and I do mean if) I can get through all that without totally stuffing up the whole relaxation mode I’m meant to be in, I then seem to have a bit (ok a lot) of trouble with placing aforementioned thoughts on aforementioned leaves in order to let them drift off down aforementioned stream.

The idea is, it’s ok to have thoughts pop into your head, it’s only natural in our conscious state after all…but for the sake of this exercise you need to learn to let them go again. I seem to have some issues with letting them go before I have reached some conclusion depending on what is warranted by the thought at the time. Not to mention the decision of which leaf to use (don’t want some flimsy little frond sinking under the weight of a life-changing concern now do I?)!

A good place to attempt this whole Mindfulness technique is the bath or shower, according to the good lady who gave me the exercise. Apparently the water (running or otherwise) helps create the metaphor of the stream. Unfortunately, I’m too mindful of the water bill to stay under the shower long enough to get the process going properly, and if I lay in the bath too long I start to get distracted by the renovations still required in the room. Not very conducive to relaxation, wouldn’t you agree?

You can also do it in bed. The nice lady also gave me a CD with a softly-spoken bloke talking me through the exercise. Trouble is he has a really unique accent so the first few times I heard him I was busy figuring out his ancestry and missed a whole lotta leaves. I finally decided that he was probably born in Liverpool (UK) but has spent some time in Australia. Turns out I was right. So at least the next time I laid back and listened I could put that particular idea on a leaf and wave bye-bye as it sailed off into the sunset.

Now, if only all the other thoughts that stray into play while I’m standing near my metaphorical stream could be as easily resolved and relegated, I’d be laying ‘em on leaves like nobody’s business.

I guess that’s what you’d call mind over (leaf) matter.

Jx
©2010

Monday, June 14, 2010

Singing in the Car

I think adults have a lot to learn from children.

I also think that if more adults were paying attention, the world would be a lot better place.

My most recent education has come from my young son, who has already taught us so much so far.

He has Juvenile Arthritis (JIA); he was diagnosed as a baby and has known no other way of life.

After years of constant pain, damage and disability, he has been accepted into a new clinical trial for the biologic known as Etanercept (Enbrel). It has been a loooooong time coming, and still cannot come soon enough for our liking. There’s only so much pain a parent can bear seeing their children suffer.

Due to very active and aggressive arthritis in his little neck, Master B has been unable to lift or turn his head for 6 months (he turns his entire body- try it, it's exhausting), both wrists have been swollen and unusable at times for >13 months (makes dressing, feeding, and toileting fun), his hip and shoulder are also giving him grief (but we've been able to keep him out of a wheelchair!), his jaw has made it difficult for him to open his mouth to eat at times (liquid diet when that happens, and not even the one that consoles adults from time to time if you know what I mean), and most recently his elbow has swollen up to the size of a tennis ball- he simply cannot straighten his arm. Oh, and since he stacked his scooter last week he has also flared-up his knee (along with a ripper of a graze). So you can see he has been struggling. As have we all.

He was in hospital three times last year with another visit on the cards if he did not get accepted into this study. He has "officially failed" all the medication he has been taking for the past, gosh, 7 years next week! That's a lot for a little lad to take, considering he’s only just turned 8.

Anyway, late in April our brave boy endured a 12 hour day, including 4+ hours travelling and 4 hours at the Children’s Hospital for blood tests, urine samples, and physical examinations, for the Screening portion of the trial. He could only begin the 2 year study if he tested negative to Tuberculosis (Tb) as biologics have been known to stir that dragon if lying dormant.

In May we did it all again for the Baseline visit, which came with the added bonus of his first round of Enbrel injections- to be administered once a week for 96 weeks. It was another marathon effort - 9.5 hours all told to travel and do even more paperwork to get things going (he is child #21 of 100 worldwide to start the study, the first in NSW and second in Australia).

While he wasn't overly fond of the blood tests he had to have again, at least it was only 2 tubes this time, not 6. And unlike last time where he suffered a little ‘performance anxiety’, he was both keen and capable of 'peeing in a cup' for the urinalysis side of things - giggling like a goblin as I tried to safely remove my hand holding the specimen jar out of the line of, um, fire ("Thanks son, we've got enough now. That's it, you can stop. Hold up, please!!!")

He did hide behind the door while I was preparing the Enbrel but was coaxed out and chose to have the injection in his arm. For those who don't know, this drug comes in 2 separate components- first you have to fit a needle to a syringe of sterile water and inject that into a vial of powder, then swirl it together carefully to mix (not shaken but stirred - James Bond would not be impressed). Then you have to fit another needle to another syringe and draw up the prescribed amount of mixed medication ready to inject subcutaneously or intra-muscularly to be more precise. Since I have been doing Methotrexate (Mtx- a nasty chemo drug) for years now the nurse thought I was totally capable of giving the first shot myself; she even said I flicked the bubbles out like a professional, LOL. Sadly my Beloved is needle-phobic, but does a great job of cuddling the lad.

Well I have to tell you, Master B said he felt the Enbrel was working that very first night! It was obviously kicking into his Temporomandibular joints (TMJs) as his little jaws did not stop flapping the entire next day, LOL. And he was up skipping (would you believe) at 9.30 Wednesday night. He beat his best mate in a running race at school on Thursday. Says he feels like Superboy!

Anyway, when he came sleepwalking into bed with me last night (luckily my Beloved was on night shift or things would've been a tad too cosy for comfort) I thought he may have been suffering a little (has happened before, his subconscious brings him to me right before he pukes or cries some nights. He's also excellent at taking himself to the loo while asleep, yay). But he awoke this morning, and aside from being surprised to find himself in my bed, he said he has NO PAIN AT ALL- for the fourth day in a row!

We can't remember that ever happening before.

While he now faces two injections a week, along with monthly blood tests and all that goes with it, our dearest wish is that this drug does the trick and our brave little boy can finally begin to enjoy a carefree & pain-free childhood, like he deserves. Doesn’t every child?

We’re back to the hospital again this week for the next phase of the trial.

And you know, on top of all this, he just keeps singing in the car on the way home!

How many adults do you know who would do that?

Jx
©2010

Friday, June 4, 2010

Insect-o-cide

Insects outnumber humans by at least 100,000,000 to 1.

And I think that their bid to rule the world has begun. Right here in our home.

If it wasn’t bad enough that I recently had to stop a speeding funnel-web spider heading towards our front door, with just the tread on my car tyre... the rain and changing weather seems to have brought an onslaught of other arachnids and cockroaches into the neighbourhood.

Can I just say I am sick to death of them popping in for a cup of sugar!

I don’t know about you but I think Cockies are the worst. If it’s not bad enough that they pre-date humans by about 225 million years, they’re reportedly going to be around long after we’re gone... quite possibly the only living creature to survive a nuclear holocaust (or an avalanche of trash, if you go with the WALL•E theory).

Dirty evil little critters that they are, they have no qualms about scuttling across the kitchen when one wanders in for a glass of water in the night. And nothing says the kids have spotted one in the bathroom quite like the bloodcurdling scream they’ve both got pitch-perfect (does wonders for tinnitus in confined spaces, I can tell you).

Even my Beloved fell prey to one such killer insect last weekend while working in the backyard… he picked up some sort of shrapnel that had been laying around since the last time he was so inspired, and this rusty-coloured creature dropped straight down his shirt.

Call me cruel but the “get it off me” dance that followed was quite comedic, especially since my Beloved professes to move like an epileptic spider at the best of times. He was most definitely unamused at my mirth when he informs me that the little bugger apparently emptied its bladder on him in its fight-or-flight manouvre.

I shouldn’t have laughed. I really shouldn’t. ‘Cause, boy, didn’t it come back to haunt me.

A couple of days later, there I was in the wee small hours (literally and figuratively speaking) trying not to disturb my significant other in any significant way whilst tiptoeing to the toilet in our ensuite in the dark. I had barely assumed the position when something dropped off the ceiling directly above the commode - straight into my lap.

So startled was I that I forgot where I was and what I was doing and leapt off the lav with an involuntary shriek. The cold feeling of fear was soon almost immediately replaced by the warm trickle of something else. Yes, seems I reacted in much the same way as the bug my Beloved battled just a couple of days before.

However, recovering both my underwear and my wits at roughly the same time, I managed to flick the offending insect off and half squished it as it made good its getaway. I also managed to do so quite quietly as my Beloved slept soundly through the whole scary scenario!

But since it’s apparently true that cockroaches can live for up to 9 days without a head, I will be turning on that light and checking carefully around the porcelain before pulling down the panties, for at least another 5 days yet…

And as for the adult-incontinence thing, let’s just keep that between you, me, and the wall, mkay? We don’t need the insects knowing just how much control they have over us (or, rather, how little we have over our bladders).

Jx
©2010