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earthkissed

Just me and my thoughts, most of them silly.

Name:
Location: brisbane, queensland, Australia

I am a daughter, a sister, a wife, a mother, a friend. Sometimes I am good at these things, sometimes I am not.

Wednesday, April 29, 2009

Epilepsy Action Australia

Whilst all my patients are coming in distressed about all the media coverage of swine flu, I am distressed about a different news story that has had far little coverage. Epilepsy Action Australia has had a major decrease in corporate donations, causing concerns that they may have to cut services.

Obviously at this time a lot of non for profit organisations are struggling financially. I am concerned about this one on a completely personal level that has little bearing on my chosen career as a doctor. My sister died two years ago at the age of 28 of "sudden unexpected death in epilepsy". This was after struggling with epilepsy for many years. I have two cousins who also have epilepsy and have struggled with all the issues this brings along.

Epilepsy is not uncommon. People with epilepsy face a lot of struggles and problems. The difficulties they face depend on how well controlled their epilepsy is. In my sister's case: She couldn't drive. She couldn't swim unsupervised. She couldn't take a bath because she might drown. She had to take medications that caused side effects and problems. She had multiple trips to the emergency departments around Brisbane. She might wake up on the street, on a bus, anywhere, surrounded by concerned people with no idea what was going on. She struggled with the stigma and misunderstanding that occurs when people know someone has epilepsy or witness a seizure. She struggled with low mood (in recent changes to the precautions on a lot of epilepsy medications increased suicidality has been added as a side effect of the medication). She struggled with multiple disruptions to her studies and her life.

It's not just the people who have epilepsy who struggle, it's their families. Imagine being a parent. Never knowing when a seizure will occur, how long it will last, what injuries they might sustain. Imagine sleeping with the doors open so you can hear if they have a seizure in their sleep. Imagine every time you hear something drop or fall, running to see if your child is having a seizure. Imagine taking them to specialist after specialist trying to get things under control. Imagine trying to drag your child out of the water whilst they thrash (now I know - three adults are probably required to swim with/supervise one teenager with epilepsy because keeping someone above water who is having a seizure is pretty tough work). Imagine them getting older and struggling with how to keep the balance of keeping them safe and having a "normal" life.

The support that some of these foundations give to families and people who suffer with epilepsy is crucial. The education, the understanding, support networks, information, training. Things that as a doctor we can't provide in the same way. Epilepsy Action Australia gets less then 3% of it's funding from the government.

If you got "stimulated by Heavy Kevie" as my other sister keeps referring to the $900 government stimulus package, consider redistributing some of that government money to a worthy cause.

Monday, April 06, 2009

Disappointment

Disappointment, as defined by Bec "planning a kayak trip for ages for when you're 23 weeks pregnant because soon you'll be too fat to kayak and after that you'll have a small baby and won't be able to kayak, spending your entire day off packing everything into dry bags and shopping for those final things you need, then receiving a phone call from the EPA to say that they have closed the upper Noosa River because of a weather event (ie some flooding)"

Matt and I both organised to have friday off so we could drive up close to where we were going on the Thursday night, stay in a cheap hotel and then kayak off in the morning. Apart from the pest of coordinating a day off like that, this was kind of my last chance, my last hoorah before my life is consumed by parenthood. We had organised to hire some nice fibreglass kayaks from Rosco - a local family business. We had borrowed Matt's parents 4WD. I had borrowed some lures to catch bass with from my boss. Had borrowed my brother's favourite rod and reel. We had booked the campsite (campsite 8) - only accessible by kayak

I had bought freeze dried food that you just rehydrate with hot water seeing as we had limited space and weren't going to be able to keep things cold - amongst many other foods and camping things we bought.
And finally on my day off on Thursday, whilst Matt worked, I gathered everything together, checked and rechecked lists, packed things into dry bags. All the while dutifully not watching the news, not reading the internet, interrupting my brother when he tried to tell me that the sunshine coast was flooded and not listening to the radio, because I didn't want to hear anything that would stop me from going, because this was kind of my last chance. If only I hadn't answered my phone either....

After throwing my 1-2 hour temper tantrum, I did calm down somewhat and manage to have a nice weekend. Friday Matt and I started driving to the sunshine coast hinterland, but stopped at Alma Park Zoo instead (we didn't get very far). We then meandered homeward. The next day we went to the kayak demonstration day that Rosco had so we could try all their different kayaks. Matt fell in love with the arctic raider. I got mildly sunburnt. Oops. Matthew tipped the kayak over and went in the water whilst trying to "edge" (whatever that means). That was incredibly funny and certainly one of my highlights from the day. Personally I stayed in wider, shorter, stabler kayaks and didn't try anything fancy. Matt looked like he had more fun. I still enjoyed myself but when you're really not very experienced (ie not at all experienced) and there are heaps of experienced kayakers standing on the shore watching you try the kayak, including the guy who makes the kayaks and has been doing so since the '60's, I find that a little less of a comfortable situation, which is why hiring them and taking them away and having fun with them out of the watchful eye of others seemed a better plan.

We went and looked at Matt's brother's house which is currently being built and the display house that shows us the finished product. Then we had lunch with Matt's dad and aunt at a yummy seafood restaurant at Scarborough.

Sunday was more of a lazy day where Matt went to uni to work, and I went to church and then flitted about having coffee with people.

Today I woke up felt like I must have put on 100kgs since getting pregnant, so stepped on my wii fit (which is the only set of "scales" I have at home) to see how bad it was and it told me I'd gained 1.8kg since getting pregnant, but I think it was just being kind, I suspect they really aren't the most accurate way to weigh yourself, but seeing as it had a before weight recorded, it seemed the easiest way.

Still trying not to think of the adventure fun that could have been this weekend.