This week I did my part in an exercise video. Yes I can hear you sniggering! Believe me no one is laughing more than me!
This video is for those of us with Pompe disease, showing exercises which will benefit us in particular. I’m not sure when it will be ready for the “In cinemas near you” announcement, but probably about the middle of this year. Just kidding about the cinemas bit! Although I see James Cameron of “Titanic” fame has bought a property near ours back in New Zealand. Maybe he will have heard of me by the time I get back and offer me a part in the new Avatar movie. I could be one of those blue people. I haven’t seen the movie, so I hope the blue people are goodies.
Actually that reminds me, years ago I was asked if one of my horses could be used in the Marlborough Man ads. They liked his Appaloosa colouring. I declined because I was worried about him being hurt accidentally. I’m sure the Marlborough Man went on to sell many more smokes regardless!
Click here if you want to get lucky!JUST KIDDING!
A lot of people have used the word “lucky” when they refer to me being over here and seeing the wonderful things that I’ve seen. I admit to being a tad miffed when I hear that word. Then I contemplate it.
I think, if I didn’t have this stupid disease I wouldn’t be here, so I don’t feel particularly lucky in that respect! Wouldn’t I be more “lucky” if I was here because I decided I wanted a vacation? Then I think, would that be luck? No, that would be good management.
Then I think, I really am lucky that I am here, that I have the opportunity to be here doing this medical trial, that there is a medical trial, and that there is hope for my future. Although, we make our own “good” luck. I went out there and grasped hold of it, so, it’s not luck that I am here.
But, I am lucky, or should the word really be “fortunate”, to have had so many people who have helped make all of this possible. Is it luck that I have such good family and friends, good neighbours, people who care and have helped us in so many ways? I would say blessed, fortunate…
I just looked up the word “lucky ” in a thesaurus. The words that came up are;
Fortunate, blessed, jammy, fluky, auspicious, propitious, providential, timely;
I guess that blows my argument out of the water! I am LUCKY!!!
Here’s something I’m excited about. This week I bought a battery for my bipap (breathing machine) so that I can now go on a plane without being at the mercy of airlines who won’t accommodate my need to breathe!
Most chicks would be excited about shoes, I’m excited about a bipap battery. Sad but true!
Oh, I also got an “inverter” with it. Whatever that is… But all of this does come in a snazzy black bag. I’m sure I can dangle something blingy from it to make it look even more snazzy.
This week I have “met” a young man who is serving in the Royal New Zealand Navy.
Benjamin Revell has been diagnosed with Motor Neurone Disease. First and foremost Benjamin is a loving husband, and very soon to be Dad, to a new baby daughter.
I would like you to have a look at Benjamin’s blog (soon to be published) and try to gain an understanding into what life is like living with MND. My husband’s grandfather had it, and my father was diagnosed with it (fortunately incorrectly).
Benjamin you are already making a huge impact on those around you with your guts and determination, your spirit and your kindness toward others. I hope to meet you some time! I really like your style xo
Here’s the boys out boogie boarding back in NZ yesterday.
See the lighthouse in the background? This place is called Castle Point.
Sophia is still with me. I’m so surprised she has not been adopted yet. Is there anyone reading this who would like a beautiful black kitty cat that is full of love and purrs? I said to my husband that I wanted to bring her back to New Zealand. He said “no”! What? Sorry…I couldn’t quite make out what you said…
I have my first appointments already set up in Brisbane, Australia. First infusion is the beginning of March, and every fortnight thereafter. It will probably involve an overnight stay in Brisbane each time due to flight times and available flights in and out of where I live.
And for today’s cuteness injection…
Until next time, over and under.