Me!

I’m not just a poorly person, I’m first and foremost a musician, and there’s no denying it. A general creator of noise playing the piano and church organ.. An accompanist, examiner, composer and arranger. That is my life’s passion.
I teach in Junior High, the History of Music, but part time, because of my health problems. It’s quite enough. My 3 days at school result in my 4 days resting and recovering.
But I work really hard to keep myself as well as I can, realistically, through physio and PT for my lungs . Before my asthma turned so antsy on me, in 2005, I used to be able to run half marathons. But now on a bad day, I can’t even walk round my house. But I try to go swimming every day that I am able. Sometimes it’s a battle between myself and the pool and the water almost  wins. But I am always rewarded by a sauna at the end which is just about the best therapy I can get.
I am a ‘We’. I have everything to thank my J for. He is the most wonderful partner anybody could dream up. And a very understanding carer. He’s been through this rocky road with me, every pothole and bump, and I’m not just talking about the drives up to the Racetrack Playa or The Wave! J is my scaffolding. He does literally prop me up every day.
I have an existence that is largely centred around doing my drugs (so eloquently put) at certain times of the day, eating a vast quantity of high calorie  food supplements and sticking religiously to a strictly Gluten Free diet.
Until my resolve buckles and the forbidden food passes my lips…..Pizza….and I suffer so badly for my sins!
What else. Well. I have ambitions, just like everybody in this world. But maybe mine are slightly smaller in scale, or on a shorter timescale. There are places I’d like to go to, but most are out of the question. Travelling with these lungs takes some mighty careful planning.
I’m lucky that as a one time Californian, I have the joy of returning there several times a year. I’m a SoCal girl at heart, and that sunshine on my shoulders really does make me happy. Not in any ways detracting from the extreme health benefits of my breathing in warm/hot/scorching dry desert air.
I’m also really lucky that 11 years ago J caught my California bug and now we travel with my lung gear and his photography equipment!
So my ambitions, simply to live another day one day at a time, as fully as I can, breathing as deeply as I can. Surrounded by the love of my family.
And maybe whizzing down the corridors of life on my little Scootie ramming just a few more ankles!

11 Responses to Me!

  1. Olive says:

    Hi,

    I have brittle asthma too and read kerris blog and came across your blog. Will look forward to reading you blog. I keep a blog too as I am a student tryign to do university and asthma!!!!

    Olive

  2. Hi Olive,

    Nice to meet you on here!

    I am very new to blogging so it will take me time to get my head around how this all works!

    Bear with it!

    Sus

  3. Becca says:

    Hey

    *also found you through Kerri’s blog* Looking forward to reading your blog- will add you to my links when I get a spare moment 🙂
    Becca

  4. Hi Becca,

    Thanks for finding me-I’ve peaked at your blog too and have added you to my links! Good luck with ICL…hope you hear soon!

    Sus

  5. kerri says:

    I think you must have a chat with those people who hooked you up with your scootie–it’s not PINK!!! 😀
    If I were there, I would have it decorated up for you in about fifteen minutes ;). I have all kinds of pretty foam flowers and streamers goin’ on up here in the frozen tundra ;).

    LOVING the blog so far, keep it up!!!

  6. Ha ha, Thanks, Kerri!

    Fly over to London-land and Pimp my ride then, Girl!

    I actually have all the flashings in blue and silver too, I could kind of mix them up a bit! I did ask the disability advisor guy if there was a model that came in pink and got a very strange look!
    My car is red so it matches…..and my soccer team play in red so I’m cool with it!

    Hugs and thanks for your input…

  7. Vicky says:

    Hey,

    Found your blog through Chad Darnells. I’m asthmatic and do 12 of 12 too 🙂

    Love reading your blog and hope you’re doing Ok 🙂

    Vicky x

  8. Caroline Hale says:

    I love your blog Susannah! xxx

  9. Gem says:

    Hiya

    I’ve just discovered your blog. I’m 20, I have Cystic Fibrosis (wasn’t diagnosed until I was 16 though and was classed as chronically severe asthma until then). I am also a music student. I play the piano, accompany people, compose and arrange music. Music is my absolute life but there aren’t a huge number of people out there with pretty rubbish lungs that also live a life of music! It would be great to get to know you! My blog is here at http://www.smallandsmiley.blogspot.com/ if you fancy chatting about things it would be great getting to know someone else with the same interests as me!

    Hope to hear from you soon!

    Gem

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